I had the recent honor of being interviewed by Sarah Peiper of the National United Cerebral Palsy Association. She noted that I wrote my autobiography in 2012. I did, but it is no longer available for sale. It IS, however, available right here for free, However, I humbly request that you consider a $6.00 donation (which more than covers the credit card service charge) to either UCP National, your local affiliate, or our own UCPA of Hawaii if you read the book. Please donate HERE if you choose UCPA of Hawaii. The book covers the first 50 years of my life. The next 13 (so far) have been filled with amazing happiness coupled (as life dictates) with incredible “trials and tribulations,” but here I am…getting on the bus! I hope that you find the book inspirational. Mahalo, Steve.

“Get Up, Your Bus Is Here”

Living MY Life With Cerebral Palsy:

 Trials, Tribulations and Triumphs

By Stephen A. Dantzig, Psy. D.

Copyright 2012 by Stephen Dantzig. All rights reserved.

Published by:

Stephen Dantzig Educational Consulting Service/Hawai’i School of Photography

2211 Ala Wai Blvd.

Suite 3215

Honolulu, HI 96815

Cover design: Terry Walker

Publisher: Stephen A. Dantzig

ISBN: 978-0-9725943-7-0 (Paperback)

Library of Congress Control Number: 2011960893

Printed in the United States of America

No part of this publication may be reproduced, stored, or transmitted in any form or by any means, electronic, mechanical, photocopied, recorded or otherwise, without prior written consent from the publisher.

Notice of Disclaimer: The information contained in this volume is based on the experiences and opinions of the authors. The authors and publisher will not be held liable for the use or misuse of the information in this book. It is the reasonable opinion of the authors and publisher that no copyrights were violated in the creation of this volume.

Foreword

What an absolutely positive, upbeat and charming book.  Stephen weaves together his stories of life with such honesty and humor.  His ability to tell his adventures, first, as who he is as an individual, and secondly, talk about his “cp” as it was just a “born with trait,” like having blond or red hair … very refreshing.

The book title, “Get Up, Your Bus Is Here,” sums up nicely how Stephen’s family saw him … no different than any of the other kids in the neighborhood.  Should you stumble; you pick your self up, dust your self off and get your self on that bus. A very basic lesson of life but one that I truly believe helped shape and mold whom Stephen is today.

I found it extremely interesting to see how Dr. Dantzig’s two passions in life (photography and working with children with disabilities), though quite different in nature, have been the true beacons of light that have kept Stephen focused and on his life’s journey.

As a national organization, UCP has dedicated its self to providing, “life without limits to people with disabilities”. Reading Stephen’s reflections on his growing up-years, he and his family lived that concept long before UCPA coined those words.

In adulthood Dr. Dantzig continues to see the world as a life without limits.  He has a PsyD, is an accomplished school psychologist, an expert in photography and written 8 books on the topic. He volunteers in his community and is a dedicated Board of Director for the United Cerebral Palsy Association of Hawai’i. 

Stephen owns a car and has a drivers license, however it is not an unfamiliar site to see him with camera and tripod in hand (or should I say in basket) as he rides his three-wheeler bike around Waikiki. As he has shared with me, the bike makes where he is going easy to reach and so much more accessible (not to mention the fee to park is free).

The book is a great read for all, and certainly gives explanation to why Stephen is the fun loving and “glass half full” type of guy he is today.

Donna D. Fouts

Executive Director of UCPA of Hawai’i

2012

Preface

I realized that my life has, in many ways, been a series of common themes that repeat over time. There were many years when I worked to deny my disability. This was not always a bad thing, but I would be involved with Cerebral Palsy in many different ways in my personal and professional lives. I have come full circle in many ways; my early years were spent at a Board of Cooperative Educational Services school for Physically Disabled Children, and the United Cerebral Palsy (UCP) Clinic at St. Charles Hospital in Port Jefferson, New York; my “first” job was as a school psychologist in a similar school and I am now on the Board of Directors of United Cerebral Palsy Hawai’i. United Cerebral Palsy is truly a magnificent organization that provides needed services to millions of children and adults. Part of the proceeds from every book sold will be donated to local UCP organizations. Mahalo for your support!

This book consists of three parts and my introduction. The introduction will give you a brief description of Cerebral Palsy. A detailed essay on what it is, how it works, what happens to the muscles as someone with Cerebral Palsy tries to move, as well as other situations like seizures and intellectually disability that are often associated is included in the appendices. Part One is my life: the good, the bad, the beautiful and the ugly. Chapter One details the memories and stories that make up my early years as a preschooler falling on my face with braces and crutches in the snow while waiting for my hour-long ride to school to early pre-Individuals with Disabilities Education Act modifications made in my elementary school. You’ll read about my transition to my local school and my first brush with negativity. In stark contrast you’ll see how my elementary school gym teacher helped lay the foundation for what became a life filled with sports and athletic endeavors. I was in elementary school when I started my life long love affair with photography. Photography is a major theme that will be visited and described throughout my life. You’ll read about how I cheated death–twice–before I reached middle school. My middle school years were marked by some battles in school and an extremely unorthodox decision that my parents made to investigate acupuncture to help with my spasticity. You’ll read about the scares–and successes of that first and other trips that took us from New York to Washington DC.  I couldn’t ride a regular two-wheeled bicycle so my parents got me a large three-wheeler. You’ll read about my many escapades on that and similar trikes beginning in middle school and continuing to this day. My first experience on skis was also in junior high school.

There are many stories about my life as a high school student with a physical disability in Chapter Two including how I managed to earn nine Varsity athletics “letters.” You’ll see where my true love for photographic lighting began and travel with me around Deer Park and New York City on photography assignments for my high school variety shows. My journey continues as I was accepted into Rutgers College as an undergraduate. My tricycle made the trip across the river to New Jersey and became a common element up and down College Avenue.  You’ll read about my adventures in the Rutgers party scene, including a memorable trip to the resort town of Lake George, New York where my friends and I would “break dance!” More importantly, you’ll learn about one professor who had one of the most profound impacts on my photography career. My career in psychology was in its infancy in college and you’ll see where it began. Rutgers was also the place where I experienced my first real broken heart and you’ll read about how I almost burnt down my apartment trying to impress her!

Chapter Three takes a detailed look at Graduate School at Rutgers and some of the fun times that continued during those years. You’ll also read about something that I have kept extremely private up until now: I battle with a degree of Obsessive-Compulsive Disorder that varies from time to time. You’ll read about how this almost derailed my psychology career and probably cost me a dear friendship. Those were dark days indeed. I fought–and fight–through those nutty ideas and went on to work in a school that would lay the foundation for my life’s work in psychology as well as teach me some amazing life lessons; I worked with children and young adults with the most severe disabilities that you can possibly imagine. You’ll also meet the woman who was responsible for opening up my sexuality and teaching me the beauty of physical intimacy. These years solidified my devotion to photography and you will see how I juggled my day job, evening and weekend job with THE mentor to whom I owe my photography career, and trips to New Jersey to complete my doctoral degree requirements from one of the most prestigious graduate programs in the country. I met and became friends with some famous photographers who also served as mentors for my budding photo career. You’ll meet one of those and see how an off-hand comment can make a huge impact on someone’s life. I joined a gym and started my own softball team in those days and found a roommate to share a great apartment by the water on Long Island. Little did we know that we would be sharing our apartment with a ghost! I have included a gallery of photographs that document my life at the end of Chapter three.

The winters in New York were taking a toll on me. I had had my fill of skiing, so three months of snow held little appeal to me. I had spent five summers visiting friends in Los Angeles and decided it was time to move. Chapter Four takes a look at my life on the “West Coast” as a visitor and then describes my “welcome” as a resident. The 1994 Northridge Earthquake hit about two weeks after I moved to LA! My work with severely disabled children continued in Los Angeles. I began a short-lived side career as a consultant and trainer that culminated in my first book. One crucial four-day photography workshop turned my photography around, but my photography career took a very unexpected twist as a result of a chance meeting at a trade show. I was still photographing beautiful women–and you’ll read about one shoot with a Playboy Playmate–but suddenly I was writing articles for major photography magazines and websites. Life was not always rosy in LA though. You’ll read about how my days as a gym rat essentially came to an end because of something called Kienbock’s Disease and the two wrist fusion surgeries that followed.

I made a fateful “one-time” only visit to Hawai’i after my wrist finally “healed.” Chapter Five tells about how that one trip was nowhere near enough. I talk about falling in love with Hawai’i, her history, slack key guitar music, and my seven other trips to the Islands before making Honolulu my home. First, however, comes my very personal stories of September 11, 2001 and how a young girl who with severe cognitive deficits continued to change my understanding of intellectually disability.  My plan was to be in Hawai’i as a photographer and a consultant, but it was not always “paradise” as you will read. I came very close to falling on my face financially before making the very difficult decision to return to school psychology, this time for the State of Hawai’i. One of my contacts with the DOE lead to another very unexpected development in my psychology career: I became an Adjunct Professor of Psychology–for two universities in Honolulu. Photography continued of course and my writing career morphed again and I share how I started producing photography books, ebooks and contributing to another major website. The absolute culmination of my photography career to date was the establishment of the Hawai’i School of Photography. You’ll read about how that came to pass as well as my experiences surfing and SCUBA diving. I grew up as a New York sports fan. The Giants and the Mets are still my teams, but I discovered another team in Hawaii that has captured my heart, and in some ways, my camera. You’ll read about how I became a season ticket holder for the Rainbow Wahine Volleyball team and photographed players on and off the court–including one wonderful lady who went on to become Miss Hawai’i 2009. You’ll also read about another former player who became a model for my school even after seeing me in public wearing a duck hat! Chapter Five ends with a tribute to my late father and best friend. Part One ends with Chapter Six, the Epilogue. Here I try to sum up the lessons learned over my fifty years (so far!) on this Earth.

One thing that comes through when I look back over my life is the idea that I am an educator; all of the roads and paths that I have meandered through all lead to some sort of academia. Part Two of this book is, therefore, somewhat fittingly more academic in nature. Appendix A is a detailed look at Cerebral Palsy and some of the associated conditions that may be experienced. Appendix B is a brief rundown of tips on how to approach someone with a physical or even obvious cognitive disability. I’ve noted that most of my psychology career has been spent working with children and young adults with severe disabilities. Part of my job has been to assess the cognitive skills of these students. Appendix C shares my viewpoints on how to do this accurately while not allowing the youngsters’ physical limitations to interfere. I share some profound thoughts on intellectually disability throughout this book and Appendix D details how I assess and understand the different challenges presented by individuals with differing degrees of cognitive disabilities.

Finally, Part Three is a list of resources to gain more information about the many topics that I discuss in the book.

You will note that I mention the last names of very few people besides those who are already known to the public. I chose to keep the full identity of most of my friends private. This is not meant to diminsh the major role that each person has played in my life.

Stephen Dantzig, Psy. D., 2012

Acknowledgements

There are so many people who have influenced and supported me throughout my life to help me achieve my successes and overcome my challenges and failures. I couldn’t list them all here, but you will read about some of them. I’ve been asked to write this book before but obviously did not. I want to thank Craig Duswalt, my friend from high school, and mastermind of the Rockstar System for Success for giving me the final push to actually get it done. Mahalo buddy!

Mahalo to Tom Celentano and other friends for the help with edits of early versions of this book. Very special mahalos to my high school English teacher and Yearbook Advisor, Peter Smiles, for the final edits.

Dedication:

To every one who believed in me, especially my parents. I love you mom and I miss you dad. You were and are my rocks to hang onto when the tide got and gets rough.

PART ONE: My Life

Introduction

There is no way that I would have believed you if you told me 32 years ago that I would be a college professor and internationally renowned expert in photographic lighting today. I am just a grown up kid from Deer Park, New York–who happens to have Cerebral Palsy. This book will share all of my accomplishments—and some failures–and will talk about what it took to achieve those milestones–and cope with the setbacks. I’ll also share what I hope are some humorous anecdotes along the way.

There is a lot of confusion about what Cerebral Palsy is and how it affects someone’s life. What is Cerebral Palsy? I wrote a “Parent’s Guide to Cerebral Palsy” a number of years ago. The Parent’s Guide gives a detailed description of some of the many facets of Cerebral Palsy. I’ve included the paper in its entirety as Appendix A. For now it is important to know that Cerebral Palsy is a general term that describes a wide variety of disabilities that make voluntary muscle control and movement difficult. I have more of what is called the “Spastic” variety. My muscles are very tight so smooth movements like walking, writing and sometimes even talking are very difficult. I cannot walk effectively without the assistance of canes, a walker or some other kind of guide.

My running joke is that I came in the world “butt end backwards” and most of my friends would say that things haven’t changed that much since then! Seriously, I was a breech birth–I literally came in the world butt first. That in and of itself might not have been a big deal; there are hundreds of breech births with no complications every day. The additional problem was that my mother was hemorrhaging badly and losing a lot of blood. The doctor had more than his hands full saving my mother’s life and coping with an infant at risk of anoxia. Well, he did the best that he could, but I still suffered a lack of oxygen. Things seemed fine to everyone except my parents for those first two years of life. My parents knew that my early motor movements were not “normal” but could not get an answer from physicians who told them that I was “OK.” This all changed when my parents took me to the Orthopedic Clinic at St. Charles Hospital in Port Jefferson, New York. We were there a very short time when the physician told them: “What do you mean is anything wrong? Of course, he has Cerebral Palsy!” My mother cried on the spot, not from grief, but rather from relief. My parents now knew what we were in for and could begin to move forward. The second critical news to come from the clinic was that my cognitive skills were intact, laying the foundations for how my parents would raise and deal with me and how, ultimately, I would deal with myself. Let the journey begin!

Chapter One: My Early days

Pre-school

There were two and one-half years where my parents knew something was not quite right. The message from Dr. Irving Shelsky when they finally learned that I did, indeed, have cerebral palsy was loud and clear: “Open up the door and let him go!” Dr. Shelsky was the clinical psychologist who conducted my early cognitive assessments. His conclusion was that while I would face physical challenges, I would be among the minority of individuals with cerebral palsy that did not have cognitive deficits. I was “lucky;” the damage done to my brain was localized to the motor cortex and missed the part of the brain that controls cognitive functions. Dr. Shelsky gave my parents another critical message; I was going to go to college. My parents were to treat me no differently than my two sisters; I would go about my business and be held accountable for my actions, but my parents were not to hold me back in any way. Now, my folks would have done the same regardless of my cognitive skills, but this served as added validation in their desire to push me as far as I could go. I remember a story about a time when I saw Dr. Shelsky and stuttered. He came down hard on my mom, thinking that she was putting too much pressure on me. I do not believe that that was the case; I probably got nervous and tongue-tied. It still happens from time to time.

It would be a while before I realized that there was something “different” about me, so I think that my parents’ journey during those early years was tougher than mine. I had the full regalia of hip high braces and “Canadian Crutches” (crutches that would clip onto your forearm).  One early difference though was that I attended a “special school” at one of the Suffolk County Board of Cooperative Educational Services schools for pre-school and kindergarten that was about an hour from home. The other kids in my neighborhood either didn’t go to preschool or went to a local school. There were physical therapy exercises to do before breakfast and then getting into the braces, but this was all I knew, so I did not recognize that this was unusual. It didn’t dawn on me that my sisters didn’t go through these activities. I grew up in New York so there was also the issue of wearing several pounds of coats, scarves, hats and mittens before the bus came. I would not be surprised if we were up at 4:30 in the morning to start the day. One of my parents would then need to be home around 4 or 5 in the evening to get me out of the contraptions and begin our night. One day I was walking to the bus and caught an icy patch and wound up face down in the snow. My mother stood true to Dr. Shelsky’s word and with tears in her eyes told me to “Get up. Your bus is here.” She obviously would have helped me if I had been hurt, but the early message to me was also clear; I was going to learn to fend for myself.

I lacked motor coordination, so my balance was never a strong point for me. I fell–a lot–as a kid. Some of these falls were quite funny. My parent’s had a film of me playing among the gifts on an early Christmas morning. We had a small playhouse where we could fit inside. My sisters were playing inside and I wanted to play. The film shows me looking out of the window with a big smile on face–just before I fell forward, taking the whole house with me! My bedroom was upstairs and the presents would be laid on the living room floor below. Our bathroom was on the left side at the top of the stairs. We were not allowed to look down to the presents because “one would disappear if we peeked!” I would feel for the bathroom door with my eyes closed with the stairs precariously close. Fortunately I never fell down the steps! On a different note, I can remember the check-ups out at St. Charles Hospital clinics. I would have to see how far I could walk without my crutches. The hardest evaluations were when I had to walk barefoot. Shoes, even without braces, provide at least a little support, but I was on my own barefoot. I wouldn’t make it very far.

I mentioned that we would have to do physical therapy exercises and stretches every day. Some of the PT games were fun as I had to work on keeping my balance while catching a ball or being gently pushed in different directions. The stretching was anything but fun. My muscles were very tight, so we had to stretch them every day to maintain whatever mobility I had. One exercise, for example, had me lying straight on my back and my parents had to stretch my hamstring by pushing my legs (one at a time) as high as they could. The goal was to get to the stopping point and then push further for counts of ten. These exercises hurt. My hips were so tight that my right leg would lift off of the bed as they were stretching my left leg. The pain would escalate when they would hold the opposing leg down.

I almost did not make it to my fifth birthday because of my spasticity. My right side is more affected than my left. The lower part of my right leg is very tight. I was (am) a “toe-walker;” my right heel does not land first when I walk. I had some voluntary control over my left ankle–I could tilt my foot up and down. My right ankle was basically locked in place even with a great deal of sometimes painful stretching. I had surgery (my first) to cut the tendon in the back of my calf to drop the heel. Not only did the surgery not work, it almost cost me my life. My parents came in to see me and I was white as a sheet and not doing well. I had an allergic reaction to the Demoral they gave me as a pain killer. I am hypersensitive to medications to this day. I lost three days last year because I took a mouthful of cough syrup.

My early days were filled with warmth, acceptance and love. I have a vague recollection of my pre-school and kindergarten teachers. The fuzzy memories are good ones. Now, the goal of Special Education is to exit a student back to general education whenever possible. I was “Mainstreamed” back to my home school after kindergarten. You might think that I would remember that day with joy and pride; after all, I had “graduated” back to a school that was 5 minutes from my house instead of an hour away. I do remember that we wore sailor outfits to get my diploma. What followed shocked me even at that young age; I was walking, crutches and all, up to the podium when a little girl with brown hair–I think she was wearing a black plaid dress–came up to me and said “I hate you!” I didn’t really know what to do because I wasn’t even sure what that meant but I was confused and hurt. Fortunately I would meet only a few other like-minded people over the years.

Elementary school years

The transition to elementary school was amazingly uneventful. I got on the “big” bus just like everyone else, but there was a “special” stop outside of my house. It became a second bus stop for the kids on my block who lived near me. It was nice not getting up at 4 in the morning! There were things that I would need to have modified because of my disability. My handwriting, for example, was always an issue. I write very slowly and it is often not easy to read what I write! I would receive “A’s” and “B’s” for math, English, science, etc., and an “F” in penmanship! You have to remember that I went to elementary school in the late 1960’s, long before the Individuals With Disabilities Educational Act was passed. “Mainstreaming” students with special needs was still a very novel idea. Early on I had to learn, with my parents’ support, to advocate for myself and ask for appropriate modifications like dictating part of a report. I have to give credit to the staff at Abraham Lincoln Elementary School; they rolled with the punches and never questioned what had to be done. I did learn some valuable lessons about accountability as well. I remember completing a multiplication problem worksheet. I finished the sheet and gave it to my father to check. There were problems that I had left blank; for example I left 9X3 blank. My father asked me why I had not done them and I said that I had already done it (3X9 earlier on the worksheet) and I didn’t see the point in doing it twice! My father laughed and asked me if I knew that those items would be marked wrong if I left them blank. I said that yes, I knew. He said “OK” and I handed the work in as I did it and got marked down for all the one’s I left blank! There was also the time when I did not complete a project and tried to fake it. That one didn’t work out very well! The early lesson from these two experiences was a good one; stick to your guns if you have a valid reason for “bucking the system,” but watch-out if you try to BS your way through something! I did not know it at the time, but the experience with the faked project was significant; I received whatever consequences were appropriate at the time and my teacher and parents moved on…but I didn’t for a while. I would dwell on that incident for way too long: I had done something wrong and learned early to beat myself up over things. You’ll see later that these tendencies have continued throughout my life. I often wonder whether I expected perfection from myself as a reaction to what I couldn’t do physically. Perfection is of course impossible, so therein lies a recipe for disaster!

Some classes required more modifications than others. Physical Education is an obvious one. I simply did not have the physical skills to participate in many activities. Once again, this was before the days of “Adaptive PE.” My gym teacher was great. He made every attempt to keep me as involved as possible, even though I was usually chosen last when creating teams. He would make me a team captain occasionally to keep that from happening all of the time. He also would have another student run for me when we played softball. This was an idea that you will read more about later. My biggest claim to fame came on the Dodgeball court. There were two versions of the game; there was a plastic bowling pin set up along the back row in one version. A team won by eliminating all opposing players by hitting them with a ball or catching one of their attacks. A team could also win in this version by knocking over the pin. I played the game on my knees–I wasn’t mobile, but I squatted in such a way that left a small target. My teams would have me planted firmly in front of the pin! The strategy was different in “pin-less” games.  I sat right up at the median line challenging the other teams. I was a “sitting duck” if they came at from an angle but I had a pretty good chance of catching the ball from direct frontal attacks. The opposing players would often avoid me until they had no choice and there were plenty of times when I was hit out. One game I was the last player on my team and the opposing team had three. My only hope was to make sure that they only had one ball at a time. I would roll the ball back because my throws were easily caught. The first two opponents tossed me “lollipops” that were easily caught. The cheers from my squad got louder with every catch. The final opponent was huge, at least in my 44 year old memory, and he was not going down easily. The standoff was on; he wound up and hit me with everything he had. Well, probably not, but that is how I remember it! His throw hit me right in the stomach and all I had to do was wrap my arms around the ball and lean forward. The game was over and I was the hero. My teammates swamped me as I hung on to the ball for dear life. It’s a great memory that I hadn’t thought of in years. I am very happy to say that my gym teacher and I are reacquainted on Facebook!

In hindsight, gymnasiums were somewhat ironically places where I was encouraged to try different physical activities–even ones that were fairly obviously out of my range of abilities. I would sit on the gym floor during handball games and whack the ball whenever it came near me. My father was a principal of a small elementary school in a neighboring town and I would spend afternoons pushing myself along the gym floor on a scooter. The kids would be playing racing games and I would be right there with them–I’d lose, but I was there anyway. The same is true of wrestling matches in my school’s gym. I would scrap, but ultimately I was a dream draw for opponents! I would try all of the apparatus during gymnastics, swinging from the ropes and rings rather than climbing or flipping. The point is that I was learning how to be active and participate in settings where it would have been very easy to sit on the sidelines and mope.

Art classes were generally disastrous; talk about a mismatch of requirements to skills! I literally couldn’t draw a straight line with a ruler! My life in the arts changed dramatically during one family vacation. Vacations have often had a profound effect on my life. I was eight or nine years old when my family took a trip to Devil’s Lake, Canada. We stopped at Niagara Falls along the way. My father was playing with a small camera; I think it was a pocket 110 instamatic camera, but I am not sure if they were around in 1969/1970. I kept pulling on him saying that I wanted to take a picture. He gave me the camera and my life long love affair with photography began. I now had a means to express myself creatively. Photography would become a major factor in my life, businesses and relationships and remains a dominant force today.

We continued on to Devil’s Lake where I had my second brush with mortality. We arrived in the late evening and parked down a path that led through a wooded area. It was absolutely beautiful, but that first night was scary. My family was by now used to the fact that I would get where I was going on my own. I would be slow, but I would get there. Well, I tripped over a tree root on the way to our cabin and was swarmed by mosquitoes. I let out a yelp and my folks came to assist me but it was almost too late. My back was one huge welt of a mosquito bite. I was a sick boy that night and it was one of the first times in my life that I realized that it was not always going to be an easy ride.  

The logic of little kids is often governed by magical thinking and I was no different. I thought that you could wish things away and I remember wishing hard for new legs. This vacation was profoundly meaningful for two extremely different reasons: On the one hand reality came knocking with a heavy hand in the form of a swarm of mosquitoes that closed off one set of “possibilities.” There weren’t going to be any new legs and my difficulties moving were permanent. On the other hand, another window of opportunities and creative outlets were thrown wide open. It’s strange, but I hadn’t put those two milestones in my life together until now.

Middle school years

My early teenage years were profoundly important for numerous reasons. The actual transition to junior high school wasn’t so dramatic, but we did have our first major showdown with a teacher. There was one teacher who did not want to make accommodations to meet my needs. My father met with the school principal and the teacher in the principal’s office. I waited outside of the building and could hear the “discussion.” I was in the class the next day. That teacher and I went on to form a sense of mutual respect and got along just fine. Our “dispute” ended, fittingly, on the gym floor. We had a multi-station weight machine that included a leg press. I forgot how much weight the “rack” was, but I bet him that I could leg press the whole rack. The class gathered around as I sat in the contraption. My classmates were cheering me on as my face turned red. I had most definitely bitten of more than I could chew. There wasn’t any way that that rack was moving. I gave that teacher the perfect opportunity to show me up. Instead he quietly kept moving the pin up the weights until there was a weight that I could lift. I finished the number of reps required to “win” the bet and he reached in his pocket and tossed me a dollar or whatever the bet was. I think we both learned a lot from each other during the years that I had him as a teacher.

Junior high school now meant changing classes from subject to subject. The biggest additional modification that was added was that I would leave 5 minutes early from class to avoid the hall mobs. I suddenly had a number of friends who wanted to help carry my books! My real friends that I grew up with were also now used to the fact that I was not going to take “no” for an answer. For example, we spent many a summer party at my “cousins’” house in Northport, New York. It wasn’t really my cousins’ house. Our parents had been friends since childhood, so they were “Aunt Doris and Uncle Terry” instead of “Mr. and Mrs. Walker.” There wasn’t anything that I couldn’t do in their yard and I was in the pool as often as I was on the softball field. My father and uncle would be in the “deep” end of the pool encouraging me to take that first dive into water that was over my head. “You can’t” simply wasn’t part of the vocabulary. You can imagine my friend Terry (Jr.)’s shock when I was told that I couldn’t go on a ride at a local amusement park. Terry was pissed! It wasn’t even the manager that made this decision–it was the ride operator who wasn’t much older than we were. Well, we snuck on the ride when she went on break. She was there when we got off and was ready to give it to us with both barrels. She started her tirade with “I told you that you couldn’t go on the ride!” Terry looked right at her and, in his best Bugs Bunny imitation said: “Yeah, ain’t I a stinker!” We walked away before she could regain her composure. We would go on bigger and better rides at the major amusement parks as we got older. Large amusement parks were problematic because of the extreme amount of walking involved, but we could, and would borrow a wheelchair for me. We’d then proceed to cover the park. Most parks  had a “handicapped” entrance to the rides that was by the ride exit. We were given access to these “entrances” and got placed on the rides without waiting on line. Sometimes we would get two or three rides in a row. I thought that this was “cool” back then, but I now realize that it just made sense for the park. I can’t imagine the liability involved if there was an emergency and someone who couldn’t move was in the middle of a huge line.

My parents always worked to make my experiences as close to whatever “normal” was as possible. All of the kids on my block had bicycles by now. We tried to get me on a bike, but the many banged up and bloodied elbows was enough to prove that I just did not have the balance required to ride a traditional two wheeled bicycle. However, my parents were not going to let that hold me back. They found an adult tricycle and suddenly I had my freedom. I’ve had many versions of those trikes over the years and ride one around Waikiki today. That first tricycle opened a whole new world to me as I spent days and days cruising around Deer Park with friends. My buddy Ken is infamous for taking my tricycle and turning the front wheel into a pretzel by slamming into a parked car some years later!

We used to have carnivals to support the Muscular Dystrophy Association. The trike had a large basket so we would ride up and down Deer Park Avenue collecting goods from merchants to auction off at the carnivals. I also rode that tricycle in three March of Dimes Walk-a-Thons: three 20-mile Walk-a-Thons! My friends and I would come home and promptly pass out on the rug next to the dog. People use to ask me why I raised money for muscular dystrophy rather than cerebral palsy. My answer was that kids/people died from MD and people with CP didn’t. That was and is certainly true, but in hindsight I think the Cerebral Palsy Telethon was a little too close to home for me at the time. There was still a bit of denial going on even though the days of thinking that things would magically change were long gone.

My parents were definitely following Dr. Shelsky’s advice to let me go. I was already in bowling leagues as well as my travels on the trike (I would stand at the foul line and swing the bowling ball three times before hurling it down the lane. My all time high game was a 161!) I came home one day from school with a proposal that would put their adopted philosophy to the test; one of our teachers was organizing a ski trip and I wanted to go! My parents looked at each other long and hard before hesitantly–very hesitantly–agreeing to let me go.

I remember that day vividly. One of the ski instructors at Hunter Mountain in New York took me under his wing and spent the entire day with me. The more accurate description is that he spent the day picking me up from the snow! I had a blast and ended my parents’ very long day by bursting through the front door yelling that I had had the best day of my life! That trip led to other ski trips over the years, much to my parents’ chagrin. Not all of the trips were as successful, but I was never seriously hurt, although there is a stray cane somewhere on Hunter Mountain! I finally realized that rolling around on a mountain with two pieces of wood attached to my feet probably wasn’t the best idea. I would get back to the lodge literally covered in snow. In fact, one man said to his little girl: “Look honey, a snowman! A man covered in snow!” I gave him what I know as “stink eye,” but somehow refrained from commenting. For some reason I could always ski Big Vanilla at Davos, but Camelback Mountain kicked my okole. I don’t know if I wound up on the wrong slope or if it was just a bad day, but there was one run where I couldn’t go more that a few feet without falling. I got “scoldings” from the ski patrol for being where I didn’t belong. At that point I was tired and annoyed, mostly with myself, and said: “Well, yelling at me isn’t going to change the fact that I am here. What do you suppose we do about it?” They strapped me down in a rescue sled and got me down the hill. I have to admit that on one hand I was very impressed with the way they strapped me in; I really felt like I would have been in good hands if I was truly hurt. On the other hand the sled ride was a lot of fun! I was never seriously hurt skiing even though I fell…a lot. Ironically, I knew how to fall and rarely fought a fall; I would just dig out and slide when I was either going too fast or when I started to lose my balance. I have since hung up my skis and moved on, but I love watching downhill skiing during the Winter Olympics.

My interest in photography continued to blossom in junior high school. I had my own 110 camera by then and took snapshots all the time. I even created my own yearbook in ninth grade. We had a shop class in ninth grade that exposed us to many different trades. Photography was one of them, but for some unexplainable reason I was not enrolled in that section. I would fix that oversight in high school.

My early teen years had a profound effect on me in a very different way. I was quickly approaching adolescence and my parents were very concerned about the growth spurt that would begin soon. I had grown out of the need for leg braces and was now using one cane. However, a growth spurt with already tight muscles was not an appealing thought and my folks were at a loss. I think that it was one of my relatives that pulled my parents aside and mentioned something highly unorthodox in the mid-nineteen-seventies; it was suggested that they look into something called acupuncture. Acupuncture was unheard of, but my right big toe was seriously hyperextended and I was facing another surgery to cut that tendon too. Surgery was a last resort so we started to investigate acupuncture. The closest center that we could find was in Washington DC. We would go and spend two to three weeks at a time in a hotel close enough to the clinic to allow us to walk to my daily treatments.

My experience with acupuncture almost ended as soon as it began. The first treatment was traumatic. In hindsight I know that I was just scared, but I screamed throughout the first go around. The type of acupuncture that they were practicing was a form of electro-acupuncture where I would hold a metal rod and they would touch another metal post to a needle and go all over the body. I don’t think that the needle pierced the skin like it does in traditional acupuncture. Rather it would deliver a small electric shock to the spots touched. It was a very quick treatment and subsequent treatments did not really hurt, but that day was agony!! My poor parents had no idea what they had gotten themselves into. We had a family meeting that night; it was going to be my decision to return for more treatments or not. They were not going to force me to return to what they saw as torture. Welcome to my first major decision in life. I chose to return for more treatments. The immediate impact on my motor control was dramatic. I walked the length of the hotel hallway barefoot and without a cane after three treatments! I think my mom cried that evening. I even walked to the clinic without my cane the next day. I suppose that I still hung on to some “magical” ideas because I tried to return to junior high school without using a cane. It did not last too long. The hallways were just too crowded and I hadn’t gained that much balance control. The big success was that I gained some voluntary control over my toe and avoided surgery. I never gained voluntary control over my ankle.

The experiences that we shared in Washington are treasured memories. My “stinker” friend Terry joined for one the trips. Two early teenage boys let loose on a hotel was the manager’s worst nightmare! We were pranksters. We rode the elevators all day and taped a “DRY PAINT” sign on the inside wall and waited for people’s reactions. Many of them actually touched the wall to see if the paint was really dry! Terry and I would cry laughing! We got in trouble for trying the “wallet on a string” trick in the lobby. My mom decided to take us to a movie one night and we hailed a cab to take us to the theater. We had no idea that the theater was in a very bad part of town. The cab driver thought my mother was nuts. We got to the theater and he asked us if we knew where we were. Of course my mom said ”no.” He shook his head and gave us his card and told us to call for him specifically when the movie let out. We did not have to call for him. He was outside by the curb waiting for us. My mother wanted a few minutes of peace one night and sent the two of us down to the restaurant in the hotel to have dinner alone. I think I ate fried shrimp every night! We were back in about 45 minutes. To this day my mother is in awe over how fast that restaurant fed and got rid of the “trouble makers.” The trips that my mom and I went on alone were spent playing a lot of cards and backgammon. I was getting pretty good at backgammon and would bet my mom a penny a piece to get snack money!

I still go for acupuncture treatments today. The benefits are much more subtle now than they were after the first few experiences, but I am convinced that I am as mobile as I am today because of those early treatments; an untreated growth spurt could have been disastrous. I have also seen chiropractors for most of my life to realign joints and vertebrae that get whacked out of place when I fall.

Chapter Two: Growing Up–Sort Of!

High School

I have to admit that I had some very unique friends with unusual senses of humor. Nicknames were popular in high school. My father’s name was Albert, but he picked up “Dan” as a nickname. I was afraid that I would pick up the end of my last name–I really did not want to be known as “Ziggy!” I had several nicknames that were perhaps less appealing to some, but were all meant in good fun. “Hop-a-long” was an early one as was the obligatory “Speedy.” The one that stuck for a while was given to me by a good friend and neighbor for years. We were walking to the bus stop and pulled another face plant in the snow. You remember my mother’s tearful encouragement to “get up, your bus is here,” well Tom had a different take on it. He looked at me and said: “Get up Spaz!” Yes, my nickname for most of high school was ”Spaz!” We even spray painted my new moniker on the wall in the basement where the stage crew built sets for our school plays and variety shows! 

Most of my good friends never “saw” what I couldn’t do despite that obnoxious nickname. I was the goaltender for street hockey games or used my cane to knock down passes during pick-up football games. Pool parties were common at my house. My parents put in a built in pool so I could exercise often. They built in a rail next to the diving board for me to hang on to so I could use the board like everyone else. The fact that I was disabled “dawned” on my good friend Mike some years later. I was visiting Mike one weekend in Queens, New York and we were heading off to one of the St. Johns University nightspots. I forgot how or why, but I didn’t have a cane with me. We were walking across the street when a car turned onto the block. The car was far enough away that it was not a problem, but I sent an urgent “GO” message to my muscles and they, in typical fashion, didn’t cooperate; I froze. My brain said “WALK!” but my body said: “NOPE, not going to happen!” I finally kick started the engine and got across the street. Mike said: “Shoot, that is the first time I realized that you were disabled!”

Everybody in high school knew who I was; in some ways I just stood out from the crowd. However, I was also very involved in many things in high school. I was on the outskirts of almost every clique, but not really in any group. I was a friend of someone in all of the groups. I obviously could not play any sports but graduated with nine varsity letters! I was sort of a mascot for the football and basketball teams for three years and the lacrosse team for one year. I was officially listed as team manager, but my real role was as major cheerleader! I was also on our hockey team, but actually had a job on that team. I was the publicity manager and would write the announcements that were read over the school public address system the day after our games. I had access to the locker rooms and went on road trips with the teams regardless of my title or actual role on the team. I would be seen riding that trusted tricycle along the sidelines of home football games with a big “Deer Park Falcons” banner that another friend made for me. One of my greatest memories ever was the locker room celebration after our hockey team completed a season as undefeated champions! 

I was too self-conscious, or perhaps I was just a lousy actor, so I was never on stage for our plays and variety shows. I worked behind the scenes on the stage crew instead. I remember that for some reason we only had one album that was played over and over and over on one of those cheap record players that the schools had. The album was Roundabout by YES. We heard that album for hours every day for weeks until one day someone let out a shriek and yelled “I can’t take it anymore!” There was the scratch of the needle on the album followed by the record flying over the set. That was the end of Roundabout! 

My main job was to go around town to photograph local scenes for a slide show to support the acts for one of our variety shows. One act was a group of students in a lounge set-up singing Piano Man by Billy Joel. I photographed the outside of a local bar to support the theme. I remember someone in the front few rows busting out laughing when the U-Need-A-Rest bar popped up on screen! I guess he was a frequent patron. Another skit was “New York, New York” so it was off to Manhattan with Terry and Kenny to photograph scenes from the City. We covered the city that day from the top of the Empire State Building to Downtown. We were kids, though, and didn’t have the best ability to judge distances. The World Trade Center was “right there” so we started to walk to the Towers.  We walked, and walked, and walked some more with the distance seeming to increase with each block rather than decrease. We finally realized that it wasn’t going to happen and decided to catch a subway back uptown to head home. We found a subway station and walked downstairs…to a series of empty hallways and rooms. We kept walking and looking for signs of life. For those of you who haven’t been in a New York City subway station, they tend to be long narrow hallways that dead end at a T where you can go uptown or downtown. Oh yeah, they are usually mobbed on a weekend afternoon. We made it to the T and turned…nobody was there. Terry and I were 17 and Ken was almost 16 at the time. Terry turns to Ken and I and says: “Hey guys? I think we are alone down here.” Ken and I looked at each other as if to say: “Shoot, if he’s nervous, we’d better be nervous!” We turned around and got out of there as fast as we could. We pooled our money and caught a cab back to Penn Station.

My photography put me right in the middle of the art world, but more importantly it gave me a “level playing field” to “compete” with my peers. I was good at it and it gave me a certain level of credibility in a social arena that is often dominated by physical prowess. Yes, I was on the sports teams as the school’s main cheerleader, but photography was something that I could actually do. It was my work that was gaining the attention of my teachers and peers.  I was still bummed about missing the opportunity to work in the darkroom in junior high school and convinced my guidance counselor to let me take Introduction to Photography as a second semester sophomore. I was enthralled from day one! The magic of the darkroom, of watching an image appear on a blank sheet of paper placed in a chemical, was something I’ll never forget. I would either have my own darkroom or work in someone else’s darkroom for the next 20 to 25 years! 

The real magic for me happened in Photo Workshop. Photo Workshop was the follow-up class to the intro course and we would spend two weeks studying various advanced topics. The two weeks that we spent on studio lighting literally changed my life. I wasn’t as thrilled with shooting still life pieces as much as portraiture. I remember that we were required to find a model to sit for a portrait session. I was friendly with the school cheerleaders because of my involvement with the sports teams so I found several girls who were willing to pose for me. It was not really an unusual request because my camera was a permanent fixture around my neck. I had “graduated” to a used Hanimex by then; it was my first 35mm camera. I was photographing everything and everyone and was eventually named photography editor of our yearbook in my senior year. My work in that first lighting class stood out because many of my classmates did not get close to their subjects but I was shooting “headshots” from the start. I shocked my physics teacher the next year when I dropped his course to take an independent study class in lighting! I remember him saying: “Let me get this straight; you want to drop a class that partly deals with how light works to take a class that deals with light?” I would understand his incredulous look years later. I spent my senior year transforming classrooms into studios photographing many of the cheerleaders and building my first portfolio. I bought my first studio set-up shortly after high school. I still have the very first dollar I made in photography; I sold an 8”X10” print to a classmate for one dollar! The Lion’s Club of Deer Park offered two $250.00 awards at graduation. A female classmate who also had cerebral palsy and I were awarded the prizes. I used the prize money to help buy my first “professional” camera. The Canon F-1 was one of the three best 35mm cameras made at the time and I owned one! I was seventeen years old and my parents were starting to get the idea that this was getting serious! I still have that camera 33 years later and use it to show my introduction to photography students how cameras work.

I was very popular in high school, but I was, and in many ways, still am very shy. It was very hard for me to talk to girls. I had the usual teenage fears of not knowing what to say to a girl I liked, but I was also afraid that my body would lock up and I would stutter. Of course that would only increase the pressure, and as you will read in Appendix A, adding pressure to an already spastic system is not a good mix. I liked several girls, but never really dated anyone. Photography was once again a saving grace in this regard; It was a bridge that I could use to overcome my shyness. I could interact with girls in situations where I was in control and had no fear of rejection. I actually learned how to talk to girls from behind the camera. While I never dated any of the girls that I photographed, I formed great friendships with several. I did make the mistake of falling in love with one model while in college (you’ll read about that in the next section).

College Days

High school was rapidly drawing to a close and it was time to consider what my next step would be. My educational future was really never in doubt. I was a good student in high school and was lucky to have a strong memory for language. I did not need to spend much time taking notes, which was a good thing because my physical writing skills were poor and I would lose the lecture if I was focusing on writing the notes. Dr. Shelsky had told my parents years earlier that I was going to go to college so my whole educational career was shaped with that goal in mind. The question was where and what to study. I enjoyed psychology but loved photography. One offered security while one was based on passion. I chose the secure route. You will see that I have had a very successful career in psychology, but I have to admit that I often wonder what would have happened if I had applied to the art schools on my list.

I had a good cumulative average and a long list of high school activities, but my SAT scores were not great. I applied for admittance to three universities: The University of Scranton, The University of Connecticut and Rutgers University. I had my acceptance to Scranton within two weeks! A rejection from UCONN followed shortly after and the waiting game on Rutgers began. Several months passed without word and we finally scheduled a visit to see Scranton. The University of Scranton is a very nice small Jesuit college nestled in the hills of Scranton Pennsylvania. Our visit was very nice; the Fathers who ran the school gave us a grand tour and were very supportive of our questions and concerns. 

We had just about accepted the offer from Scranton during the drive home. We pulled into the driveway to find my sister at the door waving a letter from Rutgers. She was saying: “It’s a thick package!!!” Rejection letters were generally kept to one paragraph on one sheet of paper; acceptance letters were thick with instructions about what to do next. Sure enough the letter began: “The admittance committee is pleased…” I was going to be a Scarlet Knight. We did not ignore Scranton however. My sister Kathryn transferred there and was very successful.

We scheduled a visit to Rutgers and were given a private tour of the campuses with the Coordinator for Disabled Student Affairs. Skip would go on to become a trusted friend over the years but his message was extremely clear from day one; he would help me navigate the campus when needed, but the work was my responsibility and mine alone. Three months later we packed the car with the tricycle strapped to the roof and headed to New Brunswick, New Jersey. My parents drove my sister to Scranton two weeks later and paid me a surprise visit on their way home. They found me in the school cafeteria and much to their chagrin my reaction was “What are you doing here?!” I guess they knew that I would be OK! 

College life was fun. I lived in the same dormitory for all four years. Most of my classes were downhill so I would fly on by trike to get to class on time. The basket on the trike took on new roles; rather than holding goods to auction off for charity, the basket now held my books and cane in place. The basket would take on a much more important role in the party scene as the years rolled on. It seems like the basket was the perfect size to hold a case of beer and I was often tasked to make the two block run to Patty’s to restock the party!

Rutgers is a huge sprawling university with classes, dorms, apartments and student centers on several campuses. You had to take a bus to get to the other campuses. It was becoming a known fact and joke that I would walk better after a few beers. I was at a party on another campus one night and apparently had a good time. The phone on my floor rang the next day. It was a guy who held the party asking for me. He asked how I felt. “Fine,” I said. “Why?” “Cause you were ripped last night!” We proceeded to argue the state of my inebriation until he asked me how I had gotten home and where my cane was. There was a long pause before I said: “In your kitchen!” I had walked to the bus stop, rode the bus back to Rutgers Campus and walked home from the bus without my cane!

Rutgers and Princeton University played the very first intercollegiate football game in history. The rivalry that lasted well over 100 years would end during my college years. The last at Princeton game was played in my freshman year. We piled into buses for the 1/2 hour ride down the New Jersey Turnpike to watch the Knights dismantle the Tigers. Rutgers fans swarmed the field after the game to grab a piece of history. The goal posts came down. I sat in my seat and watched the mayhem. We were still flying high from the victory when we got back to the dorm. One of my floor mates held up a small piece of tinder and asked: “What am I going to do with this?” I jumped at the chance and said: “I’ll take it!!!” That little piece of football lore sits on my bookshelf to this day. September 29, 1979: Rutgers 38 Princeton 14.

Rutgers was in New Jersey and my home was on Long Island, New York. I used to love it when people would ask: “Oh, you live on Long Island? Do you know Joe Smith?” Long Island is 20 miles wide and over 200 miles long. No, I very often did not know Joe Smith!! I did not have a car as an undergraduate and travelled by train back and forth from home to college. Actually, two trains were involved; I would take the New Jersey transit train to New York City and transfer at Penn Station to catch the Long Island Railroad to Babylon. I learned all of the station stops by heart. I traveled alone and would often drag a bag of books behind me. Well, I did so until I finally figured out that no one ever really did homework when they went home for weekends! My load got much lighter with that realization. The point of this is that I hadn’t yet learned that it was OK to accept help when it was offered. In my mind there wasn’t anything I couldn’t do and I actively rebelled against any need for help. So, rather than saying thank you and making my connecting train leisurely, I stubbornly stuck to my guns and struggled to make the train–or not. There were times when my stubbornness cost me a train. Penn Station has been cleaned up beautifully in recent years, but it was not the place to hang out for long in the early 1980’s. It took me a long time to realize that not only was it OK to accept help, but it was the wise thing to do! Now, actually ASKING for help was something completely different. That wouldn’t happen for many more years. I remember the day that it did happen clearly; I got out of a cab on the corner of 33rd Street and 8th Avenue–the Southwest corner of Penn Station. The clock outside the station said that I had 4 minutes to make the next train. Four minutes is plenty of time when you can run, but it might have well been a lifetime for me especially carrying luggage; there was no way that I was going to make that train…unless I did the unthinkable. I got closer to the escalator and shouted to a random person on the street: “Hey Buddy! Can I get a hand downstairs?” I stopped, waiting for time to stand still and the sky to part with an entrance to a new dimension, but something much more mundane happened. The guy said: ”Sure, where are you going?” Not only did he help me into the station, he carried my gear down to the track and I made the train as the doors closed. Oh, and yes, this was in NEW YORK CITY!! I always laugh when I hear people talk about how rude and unhelpful New Yorkers are. Here is the secret: Know what you want to ask! New Yorkers are in a hurry. Don’t hem and haw; ask for your directions or assistance directly and assertively. You’ll usually get your help.

I mentioned earlier that Penn Station has had a scary reputation over the years. In all honesty I can only point to one experience where I felt even remotely threatened. Ironically I was walking with a “Red Cap” from Amtrak who was pushing a cart full of my gear to the Long Island Railroad. We were cruising along the upstairs corridor when I caught a glimpse of this guy walking just behind me and to my right. Remember that I am a very slow walker in an environment where everyone is in a rush. This guy was keeping pace. It could have been nothing but there was no way that I was going to have this person following me when the Amtrack worker left. We approached the elevator to go to the LIRR area and I thought: “OK, it’s now or never.” I moved my hand down my cane to be able to take a swing if needed and turned to the guy in such a way that said “OK pal, I see you…make your move!” I said: “Can I help you?” It seemed like I shook him out of a trance as he mumbled something and took off. 

I did very well academically, finally breaking an overall 3.5 cumulative average in my last semester. I did have to learn to stand on my own two feet and advocate for myself when I needed appropriate accommodations. My handwriting was still an issue and many professors were good about letting me type papers rather than handwrite tests. They probably took one look at my handwriting and cringed at the thought of trying to read it! There is no doubt in my mind that the typewriter saved my career. I learned that I actually think better when banging on a keyboard. 

I proceeded through my undergraduate years as a Psychology major and English minor. That sounds a lot more impressive than it was; I didn’t study Chaucer and Shakespeare, I took Detective Fiction and Comedy. These were, in all fairness, serious classes, but they were far from the “classics.” I wound up completing the Henry Rutgers Scholar program as a senior and earned highest honors for my thesis. These were also the years that the New York Islanders were winning their four Stanley Cups in a row, so I wasn’t exactly a bookworm! I also spent many an evening playing “Space Invaders” and listening to bands in the long since defunct RUsty Screw Tavern. I still remember the $1.25 pitchers during Friday Happy Hour!

Little did I know that my two earliest jobs would become a theme for my career. I picked up a summer job as a counselor assistant at a camp for youngsters with special needs. It was a recreational camp so we would take the “kids” to community pools and beaches. One of the boys not in our group whom we would see at the pool had been in a house fire and was severely burned all over his body. I think his hand or hands were burned off yet there he was everyday with a smile on his face excited to be in the pool. The beach trips were always interesting. Most of the students had significant cognitive challenges so we would form a large circle of counselors–three in the water and three on land–to keep the students contained. I was obviously on land. One day one of our adolescent students must have “felt the urge,” and, lacking the logic to understand where he was, dropped his shorts and started to “take care of business!” You never saw six counselors converge so fast in your life!

I did some volunteer work with the Douglass Developmental Disabilities Center, which was located on the Douglass College Campus on the other side of New Brunswick. The DDDC was a special school catering to the needs of young children with severe Autism.  These were the kids that Leo Kanner had described over 40 years earlier. I was assigned one-on-one with a child and used various behavioral techniques that were state of the art at the time to help teach certain concepts and diminish what were thought to be maladaptive behaviors. Techniques for working with autistic children have changed over the years. My shift was only a few hours long, but I would leave exhausted. 

I hadn’t forgotten about photography either. I talked myself into a 400 level Conceptual Thinking Photography course as a freshman. The course was offered through Livingston College and was a 4 credit class. It was immediately apparent that I was in way over my head. For example, one of my classmates took off for Los Angeles and returned with her senior project. Her project was a coffee table book of the top Hollywood stars including a photograph of Dustin Hoffman!! My images were borderline quality black and white photographs of pretty girls on campus. I dreaded the day that we were to receive our grades. My professor seemed to know that he held my future in photography in his hands. My work was nowhere near the quality of my classmates and yet he saw something in me and chose not to crush my dreams. He pulled me aside and said: “I grade on two criteria; the work produced and what I see as my students’ potential. I’m grading you more on your potential than on what you produced.” He gave me a B+ for the class and saved my average for that semester. More importantly, he encouraged me to keep moving forward. The “C” (or “D”) that my actual work probably earned would have been devastating. It took me a number of years to realize just how critical that moment was and I was able to track him down many years later and thank him. He remembered the conversation vividly. He not only had a major impact on my photography, but I work to keep his philosophy alive with my photography and psychology students today. I will always be indebted to him. His name is Nathan Farb.

Of course I was still shooting photographs all over campus. I landed a part time job shooting for a company photographing fraternity parties. The job was relatively easy; I was to photograph close-up shots of couples dancing. My sales went through the roof because the standard shots weren’t good enough for me.  I shot all kinds of wacky angles and took weird group shots. For example, I would place my camera on the floor with a wide angle lens pointed up at a group that had formed a circle around the camera. In hindsight this was an important business lesson; I got big orders, but the company made the profits. It was my first real lesson about the importance of owning the images you shoot. I’ve never taken another “work for hire” job. 

I’ve made a lot of good friends through both of my careers, but more in photography. I met one off my closest friends during the transition years between undergraduate and graduate schools. I loved photography, so I would hop on my trike and ride downtown and hang out in the camera stores. One of the guys who worked at a local store became one of my lifelong friends, but it didn’t happen overnight. It took a weeklong trip to Lake George, New York several years later to solidify our friendship. It was a wild time.

There was a floating dock about 25 yards off the beach and Al, Tim, Chris and some other guys were lying out on it. I wanted to join them. I dropped my cane on the beach and proceeded to backstroke my way out to the dock. Al didn’t know me that well yet and he was quite concerned. He didn’t know if he should jump in a get me or let me go. I was doing fine so the guys kept a close watch and shouted encouragements. I got to the dock and climbed the ladder and proceeded to dive backwards back into the water! No one worried about me again!

We were regulars at two clubs on “The Strip” that week. I think we opened and closed one of them on the same day! “Break Dancing” was the rage at the time and we were not to be outdone. One of our gang would yell “BREAK!” and I would lie on my back on the floor with my arms and legs sticking straight up in the air and my friends would spin me around using my limbs to propel me. The music would stop and I would flip over backwards and stand up. The poor people at the club had no idea what to think or do, but we had fun! 

We rented a pontoon boat one day and invaded a nice quiet little bay with the sounds of Van Halen blasting from our boom box. We thought that we were upsetting the peace, but some of the people actually came over and joined the party. The others did not seem to mind either. I have spent New Years Eve with Al, his wife Eileen, and Chris for the last 20 years and counting.

Chapter Three: Young Adulthood

Graduate School

My graduate school days were some of the best and darkest days of my life. I applied to a lot more graduate programs than undergraduate colleges. My transcripts from college were strong, except that like my SATs, I hadn’t done too well on my GREs. I guess I was not that kind of test taker. The “Thanks, but no thanks” notes started to pile up and I began to wonder if I was really going to graduate school. I had applied to The Rutgers Graduate School of Applied and Professional Psychology Doctor of Psychology Program in School Psychology. I had not held out much hope for this program because I had heard that GSAPP preferred applicants from outside of the Rutgers system and this Psy.D. program was generally regarded as the best in the country at the time. Lo and behold I was offered an interview and was accepted into the program. It was the only graduate program that accepted my application. I was staying in New Brunwick.

Some of my early professors recognized that I would be one to “think outside of the box.” This was particularly true when it came to learning about how to assess children’s thinking skills. My cognitive assessment professor saw that I was not happy with “theories” of standardized cognitive assessment and knew that I had studied some of the work of a Swiss Psychologist named Jean Piaget. She encouraged me to take specific classes on Piaget’s theories through the Graduate School of Education. I met a professor through those classes who would later sit on my dissertation committee.

I was used to carrying a large academic load, so the work in graduate school did not surprise me. I had moved into an off-campus apartment with a friend who was a senior in undergrad, so I maintained my ties with the Rutgers nightlife. At one point my family took a week to go to London with the Walkers for my “cousin” Joe’s wedding. The trip provided my all-time favorite “most embarrassing moment.”  We were all invited to “Formal” or “High” Tea one afternoon. We were “dressed to the nine’s” and set to impress. The young lady pouring the tea filled my cup to the brim. I thought: “Oh great, what am I going to do now.” Normally I would excuse myself, lean over and slurp enough of the tea to be able to successfully bring the cup of tea to my mouth. Now I have to concentrate and from what you will read later you now know that this process has become MUCH harder! Well, the Greyhound dog that was sitting [quietly!] right next me must have been a comedian dog.  I start lifting the cup ever so slowly, when suddenly the dog lets out a yelp! Let’s just say it rained tea! I cannot repeat what I said to the dog!!! We literally lost Ken under the table. We all laugh about that to this day!

Our apartment was about five doors down from a local pub call the Ale ‘n’ Wich. The “Wich” became our home away from home. It was a real “dive” bar when we first started going. It was always empty save for a few older Hungarian men and a very old German Shepherd named “Samson.” Samson wouldn’t give you the time of day unless you were female; he was the ladies’ best friend. There was a very small pool table in the back of the bar where we could play all day and night uninterrupted. My pool playing skills had a strong correlation with the number of beers that I had consumed. I stank at the beginning but would improve with the beer. My excuse was that the beer calmed the spasticity, which was probably true to a degree. However, there was always a rapid drop off at the end of the evening.

The Ale ‘n’ Wich became a trendy college bar over time and what was once a quiet refuge became a crowded hot spot. The days of playing pool all night were over except for times when you could hold the table for a while. The winner of each game would stay to play the next challenger. I won and lost my share of games over the years but there was one night and one game that was pretty sweet. The bar was crowded and it was finally my turn to play. It was a bad night. I couldn’t sink a ball if the pocket was the size of a soccer net! My opponent was making it a slaughter. I remember missing a very easy shot and I heard him turn to his friend and say something like “What’s he doing on the pool table anyway?” I glared at the guy and thought to myself “Oh just miss this shot and give me one more chance at this.” He did and I sank 8 in a row to win the game. It was the first and last time that I ever ran a pool table! I returned his unsportsmanlike gesture by staring him down before yelling “Who’s next?” I could have been a better sport about it, but I was pissed! 

My “cousin” Terry had taken a few years off from school following high school. He chose Rutgers when it was time to return to school. One of my roommates was ready to move on, so Terry and I became apartment-mates for the next three years or so. These were relatively quiet years in my photography because we were all busy with school and an active night life. Terry became a bouncer at the ‘Wich and our “after-parties” became legendary.

Photography was still my passion even though I was not shooting much. I did store my studio gear in a closet and would transform the living room into a studio from time to time for a model shoot. The number one rule when you photograph models is NEVER get emotionally involved with your models. I made the mistake of breaking that rule. I was playing pool with another good friend at the Rutgers Student Center when I first saw her. She was stunning. I approached her to do some modeling and she agreed. We got close over the ensuing year or so, but never as close as I hoped for. Here’s a funny story about one of our “shoot-dates.” I invited her over to the apartment for a shoot that would be followed by a steak dinner. The shoot went well and we were settling in towards dinner. I put the steaks in the broiler and we sat in the kitchen talking. All of a sudden the smoke alarm starts blasting and we noticed thick black smoke coming from the oven. One of my roommates forgot to tell us that there was an oven mitt in the oven to dry out and the mitt caught fire! So much for a romantic dinner! She and I eventually lost touch, but I did see her a few years later. I had moved away but was back in town to work on my dissertation (more on that later). My friends and I were on line to get into a popular night spot and I looked up and she was on line a bit further down. My knees literally started shaking! I guess I hadn’t quite gotten over her. I avoided her for the rest of the evening and never saw or heard from her again.  It wouldn’t be the last time that I would feel that kind of hurt.

Dark Days

The human brain is capable of creating amazing ideas and great inventions. It is also of capable of inventing complete and utter nonsense that can be extremely destructive. Humans often fall prey to the nonsense that they create in their own mind. Berke Breathed created one of the best comic strips with his Bloom County. “Binkley” was one of his characters and Binkley had his own “closet full of anxieties.” The junk that he would invent for his closet was painfully funny–and painfully close to home because we all have our own closet. Mine is at the end of a long hallway in my mind. I think of the scene in The Exorcist where the camera pans up the staircase and turns toward Linda Blair’s character’s bedroom door: The hallway becomes long and frightening as the camera approaches the door. The viewer knows that what is behind that door is NOT good! This is my picture when I think of my own storage of anxieties.

How do we choose what goes into our own closets? It’s a very personal decision. I‘m not sure how many thoughts the human mind is capable of per day, but the number is huge. Most of these thoughts are neutral, like “Maybe I’ll have Roast Beef for dinner.” Some of our thoughts are very pleasant like “Maybe I’ll go to Tahiti this year!” There are also a number of thoughts that we all have everyday that are negative and sometimes “taboo.” Society has set up many ways for all of us to deal with our taboo ideas. The first week or so of the Comedy literature class that I took as an undergraduate dealt with the role of jokes in society. There are all kinds of jokes from benign to what many would call “sick” jokes. Jokes work by throwing in an unexpected twist to a set-up. The twist in “sick” jokes is usually something that society has deemed as taboo. The discussion in class had to do with the idea that these jokes provide a stress release by bringing taboo ideas out in the open and diffusing the anxiety that these thoughts can create. We also have increasingly graphic movies that act as a release for our violent thoughts. 

Yet, some people get hung up over some idea that takes up residency in their closet full of anxieties even with society’s built in releases. The root of obsessive and intrusive thoughts is the uber-nutty idea that any thought is OK…except THAT one! We all have those to varying degrees, but they are different. I like to use another movie reference when I talk about these issues in class. There was a movie made years ago called Poltergeist. The tag line for the movie was something like “They know what scares you.” We get hung up on nutty ideas because they scare us. For example, you could be a loving devoted parent and one of those thousands of thoughts that cross through your head during a day might be “What if I hurt my kid?” The thought is a random stupid idea that would never be played out, but you stand a good chance of getting hung up over it if you decide that you must never even THINK that idea. The idea becomes horrifying and you spend all your time trying to not think of it because even the thought makes you a terrible person. Here’s the kicker; it is impossible to NOT think of something. For example, if I said to you that you must not under any circumstance think of…say…green beans then the first thing you will think of is green beans! That is the cycle that feeds obsessive ideas.

Ironically we often derail ourselves just as we are on the brink of a success. I had finished my class work and was preparing to apply for an internship somewhere. New Brunswick was wearing thin after seven years so I thought maybe I would try something different. My former roommate was going to law school in Boston and asked me to join him. What could have been a great adventure turned dark for me. I was going to be on my own as a school psychologist and would be the one making the tough decisions. I had spent my early career, including those Walk-a-Thons and carnivals working to help kids. One day I woke with the question “What if, in my work I actually hurt a kid instead of help?” I knew of course that there are sometimes negative outcomes in counseling, but this idea resonated for some reason at that time. Not only would it be unfortunate, but it would be awful if that happened and I would be a rotten, horrible person if it did. Worse yet, even the idea was intolerable. Welcome to “My Silly World,” otherwise known as Obsessive-Compulsive Disorder, Stephen. Needless to say, I was in no shape to succeed in Boston and was back in New Brunswick six weeks later. My friend was stunned and left high and dry. I went back to Boston to visit later and talk it out and we parted on friendly terms, but in reality the damage was done and we’ve lost touch. It was the first time I’ve “lost” a good friend and that year is still hard to talk about–my stomach is tight even as I write this 25 years later.

I returned to New Brunswick with my tail between my legs to thankfully find my room still available. The year was pretty much lost in terms of my studies and I was still finding ways to like myself again. I spent the year stuffing envelopes in the Dean’s office to pay the rent and I picked up part time work doing psycho-educational assessments and really learning the job. I was starting to get recognized for being pretty good at my work in spite of my continued self-beatings…the revelation that you could actually live and accept yourself in spite of things that you did not like about yourself would take a while to kick in. It is somewhat ironic because I could have easily chosen my physical disabilities to beat myself up over. Maybe this kooky idea was a substitute, but my bus

was there waiting for me and I was still doing a figurative face-plant in the snow. 

I am human and unfortunately I believed the nonsense that a thought would make me a rotten stinker of a person. In hindsight I am able to realize that I am often bothered much more than necessary over real or imagined wrong doings that I have been involved in. YOU can make a mistake and I will be there to support you. However, I become a tyrant to myself when I make a mistake. Obsessive-compulsive ideas also thrive on totally irrational fears. There was a night when I was visiting New York from Los Angeles and I was out in Manhattan with Terry. We were at a bar/restaurant in midtown and it was time to head off to the train to go home. I made one more stop at the bathroom. Now, you’ve read this far, so you know that my balance is less than ideal; I need to lean on things. I finished what I had to do and leaned on the sink to wash my hands. I looked down at the sink and saw that there was fresh blood splattered all over the sink! I thought: “OK, this is not good!” I had been working with severely disabled kids for a number of years and knew how to handle bodily fluids. I made sure that I washed thoroughly and used my train schedule to open the door. I told the waitress what I had seen and Terry and I left: no big deal. Well, I was wearing white pants that night and realized that there was blood on my pants when I sat on the train. I was two hours from home and had some stranger’s blood on my pants. All kinds of thoughts went through my head and I freaked out a bit. This was in the late 80’s-early 90’s when the AIDS epidemic was growing and I invented all kinds of nasty outcomes. The problem is that I KEPT those kooky ideas even after a phone call to the Center for Disease Control assured me that “What you are describing is not a risk.” Blood tests would later confirm that I wasted a lot of energy over absolutely nothing. It’s funny, but I am still hypersensitive to things that are red.

There are many times when people joke about Obsessive-Compulsive Disorders. One of my favorite Facebook posts is “I have CDO. It is like OCD, but the letters are arranged alphabetically like they are supposed to be!” It is actually a very serious and at times debilitating condition that probably won’t ever go away if you truly have it. However, it can become manageable with a number of therapies. Human beings are unusual creatures that love to keep digging up old junk. There are still times when stupid ideas bother me or I over-analyze some mistake that I have made. I sometimes wonder if the damaged inhibitory system caused by the cerebral palsy could be related to the difficulties inherent with my own obsessive-compulsive tendencies. The key for me is to realize that that is complete nonsense and I have learned to put it on a shelf in my closet down the hallway. Now when unpleasant thoughts of any kind creep up I acknowledge them rather than attempting to shun them and march them back down the hallway and re-lock them in the closet where they belong.

What can you do about your own OCD tendencies if they are significant? Medical interventions can be discussed with your physician for severe cases. I am very hypersensitive to medication, so that is not an option for me. I believe in the Cognitive-Behavioral or Multi-modal approaches because they have worked with me personally as well as professionally. Rational-Emotive Behavior Therapy has been particularly useful.

I rebounded in time to move on to my internship the next year. I worked at a Family and Child Guidance Center. I was an intern so I had to take whatever cases were handed down to me. The variety of cases was incredible and I learned a great deal conducting family, individual and group sessions. I had one 10 year old client who had significant emotional concerns. He came in one day on a tear. He must have dropped 15 “F-bombs” within the first two minutes of our session. He was looking for a reaction. I got tired of it and said: “You know what? I’ve heard that word. I’ve said it. I’ve even done it. If you can’t come up with anything better than ‘F-you’ than don’t bother.” He sat and thought about it for a minute and came out with one of the nastiest things that I’ve ever heard! I will not go into specifics, but he told me to perform a certain act on my father! I looked at him, stifled a laugh and said: “Now THAT was good! Can I write that down so I don’t forget?” I then said: “This is great, would you sign it for me?” “Can I post on my wall so everyone can read your wonderful words?” The kid was in shock. His plan totally backfired and the situation was completely diffused. We were working calmly with legos within five minutes. Oh, he allowed me to take his “art” down and keep in my drawer rather than keeping it on display. The lessons that I learned that year would pale in comparison to what the next five and one-half years would teach me.

“The Real World”

I had spent 9 years in New Brunswick and it really was time to move on by the time my internship was over. I was now officially “ABD”–All But Dissertation–in my doctoral program so I did not need to be near campus. I could and would do my research elsewhere and return to Rutgers when needed. Terry and I were better friends at the end of our three year run than when we began as roommates, but that too had run it’s course. He needed to nurture the friendships that he had made and I was ready to leave. It was natural and right this time. Terry went on to share a house with our now mutual friend Al.

I moved back to New York and spent about 9 months back at my parents’ house. I got home and needed a job. I interviewed one Thursday for a position in a BOCES pre-school program. I have forgotten the specifics, but it was not a good match. The lady who interviewed me had an idea though. There was a position open in the next county at the Nassau BOCES Carman Road School for Children with Physical Disabilities. She called the school and set up an interview for me for the next day. I interviewed for the job on Friday morning and was hired on the spot. I started on Monday morning. The late Dr. Lombardi was our principal. He took me aside and told me that he had hired me because of my abilities, not my disabilities. The decision to accept this job laid the foundations for my entire psychology career. 

Monday morning arrived and put on my suit and tie and headed off to my first day at work. I still had no idea of what lay ahead of me. I was walking up to the front doors of the school when I heard a little voice exclaiming “Ayeee, ayeee” (Hi! Hi!). I turned to see a young girl with a huge smile navigating the sidewalk awkwardly with a walker. I said “Well hello! What’s your name?” She struggled to get “Aleee” (Sally) out through that big smile (note: her name was not Sally. Any names mentioned here are fictitious). I walked into that school and discovered a world that isn’t really even touched upon in graduate classes.

Carman Road School was so much more than a haven for kids with physical disabilities. The best way for me to describe my new clientele would be to have you picture a three-dimensional cube where one dimension is age. We had students ranging in age from three year olds in our pre-school wing through twenty-one year olds in our upper high school wing. The second dimension is physical abilities. There were some students whose physical skills were better than mine, and some with profound physical disabilities. The third axis would be cognitive skills. There were a few kids with average or above cognitive skills, but most had deficits ranging from mild to profound intellectually disability. There was a student that would fit any combination of these variables. The setting was a “special school” which meant that it was a highly restrictive environment–the students were not schooled within their home school or even home district. Some people are opposed to that level of restrictiveness, but these students received an extremely high level of services. I’ve forgotten how many speech therapists were on staff, but there were a lot. Many of the students were physically unable to speak, so the speech department was heavily involved with the best augmentative communication devices available. Some students received speech services five days a week. We had fully staffed physical and occupational therapy departments where students were also seen anywhere from one to five times a week. There were also two full time school psychologists and a school social worker who shared a suite to see students for counseling and/or assessments.

My caseload was high from day one. There hadn’t been a male school psychologist on staff for a long time and the higher functioning boys wanted to talk–in whatever way they could. I remember that I had something like thirty-five half-hour slots devoted to counseling during the week in addition to assessing students’ cognitive functioning, writing reports and attending meetings. I had to learn on the fly how to work with students who did not have access to many of the usual means of communication or even movement. I was conducting counseling sessions with students who could not talk! I learned to communicate through yes/no questions, broken sign language and using computerized speech devices. I also got a lesson in understanding speech that was very hard to decipher. I wasn’t always successful, though, to the dismay of my students. It would take a great deal of effort for some of them to say something and as much as I listened, I wasn’t always able get it. I’d say: “I’m really sorry but I missed that” and I would get this look like “You’ve got to be kidding!” They would try again and sometimes I would get it and other times we’d be right back where we started. The computers were sometimes frustrating too. The desired message might be buried several layers of information and some of the students would use a head switch to activate and select the phrase. Well, sometimes the spasticity would kick in just as he or she got to where he or she wanted to be and they would tighten up and miss the phrase. We would have to go through the whole process of selecting the submenus to get where he or she wanted to be again–and hope it was selected this time.

I think that my suite-mates thought I was nuts because I would make up crazy games to play with kids who couldn’t otherwise participate. I made up a version of basketball where we would use a garbage can and a gym ball.  I put the can along side of my student’s wheelchair and place the gym ball on his or her lap tray. It might take a while but they would eventually be able to push the ball off of the tray. They got a point if the ball landed in the can. Groups were even more interesting. I’d play a Monopoly game that would take a full year to finish. Most of the students didn’t understand the value of the money trading hands, but they were involved in a social game. The kids who couldn’t move would have to move their hand to touch mine–even if this was a fraction of an inch before I would roll the dice and move for them. My goal was to give them some sense of control even if I had to act as an extension of them to move around the board. 

I used more traditional cognitive-behavioral therapy with my higher functioning students.  The major issue was often depression. The goal was to get them to accept themselves with their disabilities. The message was to rate their situations as good or bad but to separate any value of themselves from the equation. In other words, the situation might stink, but they don’t stink for being in it; or on a more personal level, their physical disability was rotten, but they were not rotten for being disabled. My office was the “safe haven” for them to express their frustration using whatever language they needed at the time. The vice-principal’s office was next door. I’m sure she heard some rather colorful language flying out of my office! I came up with a project for all of my groups one day. We made an “Oh Well” box. We took a decent sized box and first put paper mache on the outside. Each successive group had a chance to paint it. It wound up being an absolutely awful combination of colors: there was orange, purple, green, yellow, red…you name it! The idea behind the box was simple; when something went wrong we would write it (or I would write it) on a piece of paper, acknowledge it and physically get rid of it by putting it in the “OH Well” box. I admit that I used the box a few times myself.

I also had to learn how to conduct psycho-educational assessments with kids who by definition would not be able to respond to standardized tests. Tests of cognition commonly assess verbal skills along with visual-motor abilities. “My” kids were lacking in both areas so the question for me became: How do you separate out a student’s limited physical skills from his or her “true” cognitive abilities? My earlier interest in Piaget’s work kept knocking around in my head and I began to put together the topic for my dissertation. I knew that my thesis would have to do with Piaget, but I wasn’t sure how. The fog began to lift and I began to focus on the development of higher level Pagetian concepts in children with physical disabilities. I adapted a few of Piaget’s tasks and began to look at assessing kids’ cognition in a very different way. I share my views on assessing the cognitive skills of children with physical disabilities in Appendix C.

My professional world had become one where I worked with students with varying degrees of intellectually disability. We often think that being intellectually disabled is necessarily a bad thing. Now, there are a number of people who are high enough functioning to know what they cannot do. That is a tough one because they can compare themselves to others and it is frequently not a positive comparison. However, most of the “cognitively challenged” students that I have worked with were very content. I have one student in particular to thank for that critically important lesson. The psychologist/social worker team ran a weekly group for students who would age out of our program and graduate into the next phase of life. The group was beneficial for our higher functioning young adults, but I wonder about how helpful it was for some of the other participants. One day I had run a group for younger kids playing with “Hot Wheel” cars and tracks. My phone rang before I was able to clean up the toys. A young man had arrived early for the “graduate” group and sat at the table. My phone call ended and I stopped short at the door of my office because of what he was doing. Here was a twenty-one year old young man all by himself with a set of “Hot Wheels.” I sat and watched him play contentedly; complete with the “brrrrummmm” sounds until other students arrived to break up the moment. I learned a profound lesson in life and my work that day; we are so wrong about intellectual disability–it isn’t frightening or bad…it just is…he was happy. The problem is that we often try to force a world on them that they cannot understand rather than accepting and embracing their world. I feel that we need to be gentle, but upfront and honest with parents and use the tough terminology. Yes, mom and sometimes dad will cry, but this begins the process of healing and acceptance.  I have included my definitions and understanding of how people understand their world and function at the different levels of intellectual disabilities as Appendix D.

There were many wonderful experiences during those years. We would take some of our older students to the Rocking Horse Ranch for a few days every year. The staff would chaperone as the students got to live life on a ranch. We’d go horseback riding and swim every day. It was also a great opportunity to teach daily living skills in a practical setting. The highlight of my career at Carman Road was when our school participated in the New York State Games for the Physically Challenged. It was the last year for one of my most disabled students and I was determined to get him on the track. A few years of behind the scenes work came to fruition as I pushed this young man in his wheelchair down the 40-yard dash track. The crowd was screaming and my student’s body was stiff with excitement. He had finally earned his gold medal. I also learned a much harder lesson very early in my career at Carman Road School: kids with severe disabilities can die, sometimes very young. A lot of “my” kids are no longer among us. I quickly added crisis grief counseling to my list of responsibilities. It is a skill that I have been, and continue to be called upon to use all too often.

My experiences at Carman Road School certainly taught me a great deal about working with severely disabled kids, but there were plenty of fun times too. I got back into a bowling league with some schoolmates. The league was good fun but I did not escape without experiencing some ignorance. We were in the early league and probably stopped for a quick bite in the alley restaurant after a match one day. I went back to get my bowling ball to go home and I heard one of the players in the late league say to his teammate “Oh great, we are playing a cripple!” I mentioned earlier that the names that have been used to describe me never really mattered, but I guess it all depends on how it is said. Once more I kept my mouth shut, gave the guy a dirty look, packed up and left.

I always enjoyed playing those softball games in my cousin’s back yard, but never had any realistic chance of playing on a real team in a real league. That is until I started my own team! I went to the Nassau County Co-Ed Softball League to pitch my idea (no pun intended!) of starting and playing on my own team. To my surprise, they went for the idea. There is a rule that allows for a pinch runner after the batter safely reaches first base. The league altered that rule to allow me a pinch runner from home plate. It never really mattered; I hit “Oh for my career!” My runners did reach first base on a walk occasionally. 

The team was culled from schoolmates from Carman Road and another school that I had worked at. Our original name was the “Road Warriors,” but our oh-for-the-season record belied the name. We came up with “Just for Fun” the following year and that stuck. We did have a lot of fun but we were a terrible softball team! I threatened to change the name of the team to “Just Kidding!” We did have some very good players, but many of us had no business being on a competitive softball field. We all certainly tried our best, but no one took it too seriously. How could we? Our first baseman could not move! I think we won 4 or 5 games over the 6 years that I ran the team. It did not matter; we were there for the camaraderie and good times. Some of my best memories are the after game gatherings where sometimes both teams would meet at a pub and “talk story.” The vast majority of the players in the league were really good sports and good fun. We were playing a game at Eisenhower Park one day when a tornado actually touched down while we were playing. I never saw so much rain in such a short time in my life. The wind was phenomenal too; it rained sideways. “Just for Fun” played for additional 4 years after I moved away. I am very proud of the fact that what may have seemed like a silly idea at the time turned into a team that had a ten-year run.

I joined a gym when I moved back to New York. The opinions from the physical therapists in my school were mixed on the idea. Some felt that weight training was contraindicated and could lead to increased spasticity. I thought that the benefits of getting in shape and meeting people outweighed the risks. Strenuous exercise also release endorphins in the brain that act as natural antidepressants, so that was an added bonus. I became a regular gym-rat for the next ten years or so and made a lot of friends along the way. One guy that I met early on was facing his own transition; his current housemate was about to get married so it was time to move. I was ready to end my “transitional” time at my parents house too so Jim and I became housemates.

We found a great apartment on the water in Babylon. It was the second floor of a split-level house and you just could not ask for better landlords. The couple who owned the house and lived downstairs were the best! There wasn’t anything that they wouldn’t do for us. They were “snowbirds” and escaped the rotten New York winters by spending four months in Florida. Part of my job with Jim was to watch the house while they were away.

Jim and I had not known each other that well and we were only roommates for a few months when Bill and June left for Florida that first winter. Strange events began happening almost immediately. I noticed them first and for a while Jim must have thought he had a psycho for a roommate. The first thing that happened was a lot of noise in the attic. I thought: “Oh great, the landlords leave and now we have squirrels!” Jim hadn’t heard it yet, but he went up to check the attic. There were no signs of any animals and no holes for them to get in through. I had Jim check a few more times with nothing to show from his investigations. One night I went into my bedroom and a very unsettling feeling came over me; things in my room had been moved around–nothing was missing, but definitely moved. I asked Jim about it and he said that no, he had not been in my room and that my room was a mess so I had probably moved the stuff. I replied that while I may have been messy, I knew where my mess was!

Jim was always up about an hour before me. It was a system that worked well because I would get in the shower when he was leaving for work. One day my alarm went off and I got up without looking at the clock. I met Jim in the hallway and he asked why I was up so early; my alarm was set for exactly one hour early. I hadn’t touched the clock in months. Something very strange was happening and Jim wasn’t privy to it…yet. Jim took off with some friends for a week-long ski trip. I’m sure he was happy to get away from his lunatic roommate! Things would change quickly upon his return.

Jim came back and stored his ski gear in his closet. His closet doors opened outward from the middle. We had just gotten home from the gym one night and he turned to go into his bedroom. He backed right out and said: “Come here, you have to see this!” His closet doors had swung open and all his gear was laid out on the floor in a straight row! He was officially part of the game now! Jim also began to hear the noise coming from the attic. One night was actually a little frightening for him. He would always beat me home from the gym. One night I pulled up to find him still outside. He said: “You go in first!” I thought that was odd but his story was odder. He said that he had gotten out of his car and started up the walkway when he felt an unmistakable presence–like someone was standing very close behind him. He turned quickly and saw what looked like a disappearing dark cloud!

The unusual events continued until Bill and June returned from Florida and then they abruptly stopped. This pattern continued every time they would go away with the strange things happening less frequently over the years. We got used to the things happening and would actually yell up to the attic for the noise to stop–and it would for a while! We learned that Bill and June’s son was thrown from a truck and killed on the cross street by his house. He was seventeen. I’ll let you draw your own conclusions!

I was out of my parents’ basement so the room became my very small studio. I had moved up from my trusted Canon F-1 to a medium format Bronica, but still wasn’t doing much photography. I read as much about it as I could, but wasn’t really understanding what I was reading. I was at a crossroads of sorts; I had to make a decision. I had to either get serious or get out. Of course my love for photography won out and went looking for a mentor. There was a studio in Babylon known as Creative Photography. The owner’s name was Bill Higgins. I had been in his studio as a high school student and he had always been very supportive of my budding interest and skills. Bill had purchased the old Babylon Town Hall many years earlier and had a series of separate studios that served different purposes. He had a small room for passport photos and a larger room on the main floor for simple executive portraits. The second floor of the building was up a beautiful, winding, marble staircase that led to what was once the courtroom. It made a huge studio with a number of different sets. The other rooms on this floor were either additional studios or darkrooms that were once used to teach classes. The basement of the building was where the old jail cells were and he still had a cell with all of the bars intact. The jail cell was used as the room where he would mount and frame portraits. He also had a mini-studio/camera set-up for copy and restoration work. The main attraction of the basement was a huge darkroom with a sink large enough create 20”X24” photographs in trays. He had processing tubes to print larger wall portraits too.

The building was imposing to say the least, and I wanted to be a part of it. I walked in one day with my “new” portfolio and asked if he needed an assistant/apprentice. He didn’t, but I was not easily dissuaded. He eventually agreed to a  “trial run” to see how things would go. That trial run lasted almost five years. My schedule for those five years was rather insane. I would be at Carman Road School from Monday through Friday until 3:00 and then head to the studio from 4 to 7 every day except Wednesdays. I was also at the studio on Saturdays from 9:00 to 1:00. I would meet my friends at the gym when we closed the studio at night.

Bill’s studio was actually very automated so I rarely actually helped him on shoots. My job was to keep his desk clear of clutter and work at times in the darkroom for him. The darkroom was a magical place for me but not without high expectations. Wasting photo paper was not an option so I had to nail a perfect print with very few mistakes–especially when making those larger prints. I also had free reign to use the darkroom for my projects. I wasn’t coordinated enough to load the film I had shot without damaging it and Bill was always extremely gracious about loading my film onto the reels for me to process the rolls. Most of our time was actually spent talking story. I would go off and do my own shoots either in my little studio or sometimes I got to use his studios. He would then set about “teaching” me how to fix lousy lighting. In hindsight Bill never taught me anything; he would find unique ways to make me critique my own work and figure out how to improve my work. It was a teaching technique that was at times very frustrating, but very effective in the end. He told me much later that he had deliberately chosen that style for me. Bill constantly challenged me to think about what I was doing and the process behind my approach. He forced me to read–and re-read whatever came across his desk that was related to photography. Rangefinder Magazine was a monthly magazine that was absolutely required reading. The magazine ran a series of profiles of high level photographers as well as “how-to” articles and product reviews. I was to stop whatever I was doing when the magazine came in and read it cover to cover. I was also required to read all of the advertisements too. My job was to analyze what the ads were trying to sell me and why the advertisers thought I needed the product or service. I had to figure out how to use what I had to get the results promised in their advert, or if I did not have it, then figure out how to make it! There were some things that I would need to buy of course, but that wasn’t really the point of Bill’s lessons. He was teaching me how to learn about my trade. It was the best education I could ever ask for and it is one that I continue to rely on and use today. I was there the day that he finally locked the front door for good years later and we remained very close friends up until he passed away in 2010.

I had other mentors as well. The PhotoEast convention is a huge annual event where the best photographers in the world converge on New York City for a half-week of seminars and trade shows. My assignment from Bill was very familiar; go to as many booths as possible and see what the vendors are selling and why. The seminars were usually top-notch, but I would go one step further; I would always bring my neophyte portfolio with me and ask these big shots for a critique. Most were happy to do so and the majority of those were very supportive. Some became friends that I am still in touch with. One day I met a photographer named David Mecey. David was a photographer for Playboy at the time. He looked at my work and blew me away with his comments. He asked if I was working alone. He was not surprised when I said that I was. He told me that my work had potential but I was losing a very important connection to my models when I moved around to adjust the lights. He told me that my work would skyrocket when I started to use assistants to tweak the lights and exposures. He was right! I am still amazed at the level of intuition that he possessed to be able to see that in my photographs.

It was now midway through 1990 and my dissertation was still not complete. I had chosen a difficult topic and very strict guidelines for who could fit my study sample. I was having a great deal of difficulty finding subjects to fit my design. I was studying the development of higher level Piagetian principles in children with cerebral palsy. I had to control for overall cognitive skills to compare the selected concepts with “typical average” students. It was a lot harder than I had imagined even after expanding my criteria to include children born with Spina Bifida. I was growing frustrated and began to think that I would be “ABD” forever. I kept up my research though and finally ordered a dissertation from a different university to review.  I was shocked at how bad it was! I made a phone call to my dissertation chair to vent. I told him about the thesis I had just read and how frustrated I was. He laughed and said that he was wondering how long it would take me to realize that it was time to move on. He said that he could not tell me this–I had to come to the conclusion myself. He said to keep looking for subjects up to a particular date and then analyze the data collected and write the damn thing! We chose Halloween as the end date. My dissertation was written and defended by May of 1991.

The process of writing the thesis was challenging. This was long before laptops or even personal computers were popular. We were still using “Superwylbur,” a huge mainframe computer at Rutgers to analyze data. I did have access to PCs to write my paper, but that room was in New Jersey and I was in New York. My schedule got even crazier as I traded my Friday afternoons and Saturday mornings at the studio for weekend road trips to New Jersey. I would arrive at the computer room by about 6 in the evening and work until 8:30 or 9:00 before meeting my friends for a night out. I’d be at the computer with a large cup of coffee early on Saturday and work/write all day and into the evening before again meeting friends. Sunday was the same except for the late drive back to Long Island where I would get home in time to go to bed and start the process all over on Monday. This weekly sequence was my life from November through May, but I got it done and graduated with a Doctor of Psychology degree in May of 1991! Education was highly valued in my family. My sisters Kathryn earned her Masters in Accounting with a 4.0 average and Susan earned her Masters in Education before going on for her Juris Doctor.

Rutgers University turned 225 years old in 1991 and select students were granted a commemorative diploma to celebrate the anniversary. Each college within the University nominated students for the occasion. I was chosen to represent the Graduate School of Applied and Professional Psychology. It was an honor that I wanted to keep a surprise from my parents so I didn’t tell them about it. The idea backfired. The “special” diploma recipients were ushered into the arena last, so my graduating cohort entered long before me, much to the angst and chagrin of my parents; I was not among my classmates! My poor parents had no idea what had happened to me and were starting to worry when I was spotted among the celebration group. I think my folks were relieved, proud, and then more than a little annoyed at me for pulling this little surprise! It all worked out in the end I had my commemorative diploma framed for them.

Chapter Four: Los Angeles

There was something else happening during my “second” New York years: I was discovering Los Angeles. I worked a ten-month school year, but we had an “extended school year” program than ran for 6 weeks every summer. My high school street hockey buddy, Craig, and college friend, Lou, lived in LA, and I would hop on a plane and spend 3 to 4 weeks with them after my school year ended. Those summers were some of the best times I ever had. Somehow it seemed like no one was working (except Lou) during my visits. Craig lived all over LA during those years so I got to know my way around Los Angeles. I had no idea how important that education would be in a few years.

The partying over those years was not quite up to the standards of “The Sunset Strip,” but we put forth our best effort. The “hot spots” would change from year to year, but damn we had fun! My roommate Jim joined me on one trip when Craig lived in Redondo Beach. Brennan’s Pub and the Red Onion were the spots that year. Brennan’s was world famous for it’s Thursday night turtle racing. Craig’s roommate Eric had a turtle named “Dawn” that would “race” on Thursdays. Dawn had been “Don” until Eric realized that “He” was a “She!” Brennan’s had a small area on the wall leading outside to the turtle track that was framed off for photographs. It was affectionately known as the “Wall of Shame.” Jim and I were proud to have our photos posted during the relatively short time that we were there!

Gladstone’s on the Beach was the spot another year. Craig lived in “The Valley” at the time, so we were much better behaved because of the drive home. Gladstone’s was at the intersection where Sunset Boulevard met Pacific Coast Highway, so the drive was considerable. One night we were driving back and got to the big bend in the 101 freeway as it leads into the Valley and Craig said: “My contacts fogged up.” I said “pull over, I’ll drive.” He replied, “No, it’s ok, I am not drunk, I just can’t see!” Hmmm….Okeee Craig!! Craig’s friends had become my friends and Robert, Eric and another friend Jeff were regulars that year. One of us had developed a crush on the hostess and we were all working up the courage to talk to her. We invented a new shot and called it “Liquid Courage” in deference to the line “Take another shot of courage” from the Eagles song “Tequila Sunrise.” We stopped every girl and/or couple that passed us for advice on how our friend could approach her. Nothing ever came of that crush, but we had a great time.

I mentioned earlier that the fluidity of the muscles groups can change in people with cerebral palsy. The freeze-ups often occur when the pressure is on, like crossing a street with a car coming. I forgot which trip it was or where we were, but one incident provided a good laugh for my friends and me that lasted several years. I was out at a club in LA with some friends one night. A very pretty lady walked up to us and introduced herself. My friends all told her their names. Well, when she got to me my mouth opened, but no sound came out! I sat there open-mouthed for several seconds until one of my friends said “He’s Steve!” I regained my composure in time to say “Yeah, what he said!” The lady’s name was Beverly, so whenever my body froze up on me during the next year or so my friends would say that I “Bevved!”

Lou wasn’t far from the action during those years. Our main stops became Casa Vega Mexican Restaurant in Sherman Oaks and Barney’s Beanery in West LA. Barney’s was always a blast. All you had to do was show up and wait; something unusual was bound to happen. I’ve had some of my most interesting random conversations in that place. However, the best random chat I’ve ever had was when Lou and I were up WAAAAYYYYYY too late and hungry. Tommy Burgers in Van Nuys was the classic scary dangerous place to go for late night munchies, but we were down in West LA and Barney’s was probably closed. We stumbled upon a classic LA dive known as the OKI DOG. This was the original Oki Dog that was featured in the movie The Drifter. It was the scary dive that the movie depicted. Lou and I sat down with our bucket of grease and took it all in. There was a much too young girl hanging around apparently looking for her next trick and then there was the “gentleman” sitting at the end of the picnic table where we sat. He was social and struck up an interesting conversation. We were trying to be social and asked him what line of work he was in. His reply was classic: “I’m in sales and distribution!” We politely declined what he was selling, finished our grease dish and got out of there!

Casa Vega was much more subdued and MUCH classier, but no less fun. The “Vega” had the best Mexican food that I’ve ever had and margaritas that would knock you to next Tuesday if you were not careful. I became known as a regular over the years and one of the bar tenders would always exclaim: “Oh no, bar’s closed–oh OK, but just this one time!” whenever I walked in! One day I stopped in for lunch and sat at the bar talking to Juan. Casa Vega was on the corner of Fulton Avenue and Ventura Boulevard. The closest North-South cross street was Moorpark, about 1/4 mile away. I sat at the bar and Juan said: “I’m mad at you!” I played along, knowing Juan’s humor and said “Oh yeah, what did I do this time?” He said that I tried to skip a tab last time I was in and that he had to chase me to Moorpark! I laughed and said “If YOU had to chase ME all the way to Moorpark, then YOU are in really bad shape!!!” Another time I was in the bar during the busy prime time evening hours and Juan was fixing my margarita. He looked at me and said: “Are you driving?” I shot him a look of great concern and shook my head “no.” He laughed an evil laugh and added way too much tequila for that drink! Good times.

I was growing weary of the New York winters and saw the potential of photographing actors’ headshots in Hollywood, so I started to look for school psychology positions in Los Angeles. I arranged a series of phone interviews with the Los Angeles County Office of Education. LACOE was not Los Angeles Unified School District. It, like BOCES, provides educational services for students that local districts did not serve. I was offered an opportunity to fly out to Los Angeles at my cost for a “final interview.” I responded that I would fly out only if I had a firm offer of employment requiring only my signature to be binding. The contract was faxed to my school office the next day. I interviewed the following week and moved within a month.

My move to Los Angeles also ironically coincided with the development of what would become an on-again-off-again romance/intimate friendship with a very special lady. It would be a relationship that would span twenty years. We knew early on that we were not meant to have a consistent long-term relationship. That decision had more to do with me than her, but I cannot specify any particular reason. Our friendship transcended time, distance and other relationships. We would both know within seconds whether the phone call was a quick friendly hello or an hour-plus “I need you” session. Our intimate moments were limited by distance–we simply didn’t see each other very often over the years–but more importantly by strict social rules. We were physically off-limits if either of us were interested and/or involved with someone else. That was the beauty of our friendship; we were each other’s best cheerleaders and could talk each other through our individual relationship problems, but could reform a physical relationship when appropriate. We were both physically naive and we helped each other discover the beautiful nature of physical intimacy. I lost my dear friend to cancer a year ago. I miss her.

I arrived in Los Angeles on January 3rd or 4th, 1994. The going away party in New Jersey was interesting. We had to evacuate my friend’s house at 3:00 in the morning in about 4-degree weather because the fireplace downstairs ignited a fire in the wall. My welcome to LA would be even more momentous.

My new home was in a small section of North Hollywood known as Valley Village. Craig was living in the building that I moved into. Robert also lived in the building. Craig had lived in the same building when I came to visit some years earlier. Ironically my first apartment there was the one he rented years prior. My college friend Lou lived down the road in Sherman Oaks. My schools were in the North Los Angeles desert, about an hour away from my new home in the San Fernando Valley. Los Angeles is a jungle of intertwined freeways leading in and out of the city in every possible direction. The route that I took to work was the 405 North to the 5/14 split. The 5 freeway would continue north towards Sacramento and the 14 would veer Northwest up through the Antelope Valley where I now worked.

Southern California is unfortunately known for its occasional shake-ups. I had spent five months over the previous five years in LA and had never felt even a hiccup. That would change in a big way very soon. I was still in the process of unpacking and getting used to my hour-long commute to work. It was a pretty drive that was fairly easy because the people in bedroom communities of Palmdale and Lancaster worked in Los Angeles.  I had the reverse commute and crossed over the Santa Monica Mountains into the “High Desert.” I passed the Vasquez Rock Park every day. You’ve seen Vasquez Rocks if you’ve ever seen the original Star Trek television series. Vasquez Rocks was featured as almost every foreign planet when Captain Kirk and his crew beamed down. There was a very long down hill ride coming back to the city and I got tagged for my first driving violation that year!

Earthquake!

Martin Luther King Jr. weekend was upon me…I’d have a nice three-day weekend to keep unpacking and acclimating to my new digs–or so I thought. 4:31 in the morning on January 17, 1994 is a time and date that will be remembered forever by everybody in Southern California. I was awakened first by an amazingly loud BOOM! It sounded like a bomb went off outside my window. I sat up with a start yelling “What the…” Then the world started rocking. I have experienced many earthquakes since that day and some sort of just roll through. This one was different. This one was like a massive jackhammer ramming up from underneath me. Somehow I recognized what was happening and remembered the advice to get under a doorframe–why? I don’t know, but that’s what I had heard. I cowered under the doorframe of my bedroom on the verge of freaking out. I remember clearly the conversation in my head: “Now hang on. You cannot lose it. You HAVE to keep in control.” I calmed down enough to regroup a little. It was PITCH black. I found my light switch and cried out when the lights didn’t come on (DUH!!!). I was still on my knees in my underwear when I began to hear signs of life in the building’s large common area. I felt around for some clothes and gingerly felt my way to my front door; I did not know if there was any broken glass along the way.

It was absolutely pitch black outside. The only reference to location was the sound of my neighbors asking if everyone was OK. I found my friends Craig, Natasha and Robert. We were all safe. The phones were obviously dead, but cell phones were working intermittently. Craig was able to get through to his parents and they called my mom and dad to tell them that I was OK too. This extremely frightening event brought a small community together as one; Craig’s cell phone made the rounds and Robert braved the trip back upstairs to get a battery-powered radio. I was taken aback at just how dark it was outside. I don’t think anyone went back inside for a few hours as the aftershocks began to roll in. I met two people that early morning that would go on to become very close friends. Greg and Johnny remain friends to this day.

“Aftershock.” What a lovely euphemism for “earthquake!” We still had no idea what if any damage was done to our building or if it was even safe, but we all began to return to our apartments to investigate when daylight broke. I lived on the ground floor of a three-story building so there was obvious concern about the structural safety of the complex. I wasn’t eager to meet my upstairs neighbor up close and personal. It turned out that we were very lucky. The building did sustain some damage and a couple of units were declared condemned, but by and large we escaped unscathed. One of the most bizarre things that I’ve ever seen was in Craig and Natasha’s apartment: a vase on their entertainment center had been thrown into the air, flipped, and landed upside down as if placed carefully on the shelf.

The damage done outside of our building was devastating, but in strange patterns. It really depended upon what vector you were on. There were blocks where the middle of three buildings collapsed while the surrounding two remained relatively intact. Lou’s house survived as well but the freeways were a different story. The 10 Freeway buckled just outside of Santa Monica and the portion of the 5 Freeway that ran over the 405 collapsed. The very overpass that I traveled on to get to work was no longer there. The quake has been listed as between a 6.6 and 6.8 magnitude. Other unofficial estimates were in the 7.2+ range. The death toll from this event was finally listed at 72, but would have much higher if the quake had occurred 27 hours later and I may have been one of the casualties because I would have been on that road.

The fallout from the earthquake was significant. My one-hour commute became a 2+-hour ride as we had to meander through old canyon roads to get past the destruction of the 5 Freeway. I recognize that I had a unique opportunity to document the devastation as well as the rebuilding process of the freeway system. I passed the wreckage everyday so all I had to do was snap a photograph with each pass. I couldn’t do it. It was still just too close to home and terrifying. The Los Angeles Times published a book that showed the scenes of Los Angeles after the quake. It would be months before I could buy the book. I mentioned that I worked in the high desert. There was an air force base somewhere in the area. My new clientele were kids much like those I worked with in New York as well as children with extreme emotional difficulties. One day I was at a middle school site for kids with these emotional concerns. One of our military planes flew by and broke the sound barrier with a resounding “BOOM!” What did the new “Doctor of Psychology” do? I let out a scream of “EARTHQUAKE!” which did nothing but get the kids all riled up. One of the teachers shook her head and said, “No that was a sonic boom!” Ooops!

The aftershocks continued seemingly forever. I’d be upstairs at Robert’s place–I spent a few nights upstairs while waiting for the damage assessment. The logic was that we had a better chance of surviving if we fell on someone than if someone fell on us. The aftershocks would come in waves and we’d watch to see if his collection of cassettes and CDs would fly across the room again. You would see storefront windows buckle and bow but not break when an aftershock would roll through while you were shopping. People would ditch the equipment at the gym and head for the doorframes with the larger shakers. We got to the point where we could pinpoint the magnitude of a quake within a few decimal points: “Ooh that felt like a 3.2!”

Life somehow began to return to whatever “normal” was. The commute was now nasty, but I had to get to work. My new job was in many ways similar to my work in New York; my clientele was comprised of the most disabled kids in the school system. The most severely involved kids were in a special school placement much like the one that I had left in New York, but more of the students were in “self-contained classes” on regular school campuses. I was now an itinerant worker moving from school site to school site.

I was a new school psychologist in California and had to learn some new rules regarding assessments. I already had some issues with “standardized” tests of cognition and had spent five years adapting them to fit kids who didn’t fit the standard profiles. California had its own very unique twist on assessing cognition within the school system: The Larry P. vs. Board of Education decision essentially outlawed the use of standardized measures of cognition with school children of African American descent. You could not use any test that would yield an “IQ” type of score because the court decided that such tests were culturally biased and were being used to place a disproportionate number of African-American students in special education. We were still tasked with assessing all students; we just couldn’t use these measures with a large portion of students in the schools. The task now became to find valid alternative measures to get the job done.

All of the new psychologists for LACOE were required to attend training sessions with a lady named Jean Fentiman on a test called the Southern California Ordinal Scales of Development: Scales of Cognition. To be perfectly honest, I wasn’t looking forward to spending two days in Downey where our central office was located; the traffic coming home was worse than the post-earthquake trek to the desert. It would, however, become a very important two days in my psychology career.

The Southern California Ordinal Scales of Development were written as part of Southern California Diagnostic Center project that grew out of the Larry P. decision. The Scales consisted of six different domains: Cognition, Communication, Practical Skills, Social-Emotional Behavior, Fine and Gross Motor. Jean co-wrote the Scales of Cognition. My mood changed very quickly when Jean started talking on the first of those two days. She was talking Piaget! The SCOSD were/are a series of scales based on the work of the man that was the basis for my own doctoral thesis. I showed Jean my dissertation the next day and she asked to borrow it for a while. It became the basis for a great collaboration and friendship. She and I began to meet to compare notes and talk more about the possible implications that the Scales of Cognition could have on the education of children and young adults at the different stages of development. The beauty of the Scales was that they were not a norm-based standardized measure, so you could use them with all students regardless of culture or race. I was also able to modify the way the items were presented. It did not matter how the student responded. What mattered was understanding the developmental sequence of the concepts assessed and where the student’s response fell along the continuum. This also meant that there was no student who was “untestable.”

I may have found somewhat of a niche with the developmental approach to assessing children, but I was growing increasingly unhappy. I had moved to California to be a photographer and this wasn’t happening as consistently as I would have liked. I had been working for LACOE for about one and one-half years. The principal of the area where I worked asked me to join her for lunch one day. We went to a local fast food place and she dropped a bomb halfway through some pleasant small talk. She asked what had happened to my smile. She said that I seemed like a different person than the one she hired. She wasn’t angry; she was concerned. I never forgot that talk or the respect she showed me by pulling me aside to talk. I told her that she was right and that I was unhappy and why. I promised that my feelings would not affect the quality of my work and asked her to tell me if it did. We came to that agreement but it wouldn’t last long. I quit my job shortly afterwards to pursue photography full-time.

Sometimes dreams don’t always come true however. Things got lean really quickly without a consistent income. I was close to the end when the phone rang. It was my main boss asking if I would be interested in coming back either as a consultant or part-time. I went back half time and then 3 days a week. Part time work wasn’t paying the bills so I got a second part time job working with Pasadena Unified Schools. I was also asked to provide training on the Ordinal Scales for the Pasadena School Psychologists. My relationship with Jean continued to grow and soon I was co-training with her for LACOE.

My work with Jean culminated in the publication of A Guide to the Theory, Administration and Interpretation of the Southern California Ordinal Scales of Development: Cognition. I established a consulting firm and published the book myself. My work with Jean on this book did several things. First, we established functional definitions for the different levels of intellectually disability that were based on what the brain could handle at different levels of development rather than on the basis of a scaled score on a standardized test. Second, we took a close look at some of Piaget’s major concepts and applied them to the skills needed to handle mainstream educational programs. We looked at this from the point of view of kids who would not develop these concepts but also students whose general cognitive skills were fine, yet had specific areas of difficulty. We examined how those difficulties might affect performances in the classroom. My work with both school districts was critical because I was seeing students on opposite ends of the spectrum. I was working mostly with kids with lower cognitive skills at LACOE, but “average” kids in Pasadena who had problems processing information in specific ways. Of course I also had Jean to bounce my ideas and observations off for feedback.

Eventually; the task of juggling two school districts got to me and I went back to LACOE full time. This time I was placed out in the East Covina area but part of my job was now to provide training and support to all of the school psychologists within LACOE. Remember when I said that the “education” I received hanging out all over LA with Craig would come in handy? Part of my job was now to drive to schools that were all over those old haunts!

The majority of my work when I wasn’t training school psychologists was once again working with kids with very severe disabilities and counseling their parents. On a rare occasion I would be able to tell a parent that an earlier assessment indicating cognitive deficits was inaccurate, but mostly my job was to break some difficult news to mom and dad. It would take time for the news to sink in and I learned the importance of holding a private meeting before the “official” meeting with the whole school team. My “new” principal got used to and supported the idea that my parent meetings would often run long and that I might miss later engagements if the parents still needed time. It was and remains the most difficult and heart-wrenching part of my work. The fact that I have cerebral palsy has probably helped in my conversations with parents because there are many ways that I can relate to what I am telling them. There have been times though that it has been a double-edged sword. There have been times when parents haven’t heard what I was saying about their child’s cognitive skills and then talk of how their son or daughter will go on to be a school psychologist just like me. It is always a difficult balancing act to be upfront and honest with parents and not dash every hope that they have. Acceptance is a process that does not happen over night.

I’ve said that I hadn’t moved to Los Angeles to be a school psychologist. I moved to pursue my dreams of photography. “Hollywood” was calling, but not in the traditional sense; I wanted to be behind the scenes photographing the stars! Well, it did not exactly turn to that way, but in hindsight my years in LA were extremely important in the evolution of what my career has become. My first task was to find a space for a studio. I had been the staff photographer at a local playhouse on Long Island and used their rehearsal/costume room for a studio for my last year in New York, so I started to look for a similar arrangement in Los Angeles. Amazingly I got an interview at one of the first places I called. I had a new portfolio of theatrical shots from New York, so I felt confident. I showed the owner of the theatre my work and he commented: “at least the photos were in focus!” With that comment I became the staff photographer for the famous LA Comedy Connection Comedy Theatre. I would shoot their promos for years to come and many of my images are still on the Theatre’s website. I was given a key to the theatre to use the stage whenever it was available for my own photo shoots. I was able to leave my gear in a backstage closet so setting up was much easier than dragging lights back and forth from my apartment.

I was really struggling to find “my style.” I remember taking my portfolio around to the major model agencies in New York City and hearing that my work was “too commercial” for the high fashion world. I didn’t quite know what that meant so it was frustrating. By the same token I wasn’t having a lot of success developing a style as a portrait photographer. I worked with children in my school psychology job and I wasn’t very interested in photographing children or families in my studio, so I was lost in a sort of photographer’s no-man’s land.

I joined the Los Angeles affiliate of the Professional Photographers of America. The Professional Photographers of Los Angeles County were a great bunch of people and I quickly felt welcome even though I was not producing high quality portraiture. I was the guy hanging out in the “commercial” division of PPLAC. I eventually joined the Board of Directors and became the editor for the group’s newsletter. The Reflector was actually a mini-magazine that we published each month and I was responsible for the editing, designing and often writing the content for the publication.

I found that many of the guest speakers that presented at our monthly meetings spoke on topics that on the surface I had little interest in. However I would go to the meetings anyway because I was learning that every speaker had something of value to say–even if I had to extrapolate the information from, say a talk on photographing weddings. I didn’t have the mobility so weddings were not my “thing” either, but I learned to apply what I heard to my growing understanding of photography. We also had quarterly print competitions that our affiliate turned into mini-critiques. It took me a good two years to enter but I took home an Award of Merit my first time! The image was of my friend Drinda standing on a huge rock, a photo taken on one of my visits before moving to Los Angeles. The location was El Matador Beach north of Malibu on the Pacific Coast Highway. The beach was well below the highway. Drinda and I lugged my gear down a pretty narrow and treacherously steep slope to a series of equally steep stairs that lead to the beach! Thankfully someone saw us trying to get back UP to the highway and gave us a hand. I went on to receive about twenty more merit awards and a couple of “Best in Class,” but never won “Best in Show!!!” I did receive a “Judges Award” for one of my commercial interior images. I was at a Studio City Chamber of Commerce meeting and a gentleman asked if I could shoot his kitchen and bath showroom. I said “of course” and got the job. I had no idea how to shoot kitchens but could hear my friend Bill all the way from New York: “Figure it out!” I did and the image became my first magazine cover and took home that Judges Award. I did learn a quick lesson on how light reflects off shiny surfaces. We set the lights up to photograph a glass shower. We were shooting film and thankfully shot Polaroids of each set first. There was a beautiful reflection of our strobe in a softbox right in the middle of the shower! That plaque is on my wall behind me as I write this 15 years later.

There were three events related to my experiences at PPLAC that had a profound impact on my career. The first was actually through our sister affiliate the Professional Photographers of Orange County. Dean Collins was a phenomenal photographer and educator. I had read–or tried to read–his work for years but never understood what the heck he was talking about. He was also a pioneer in the digital “revolution” and had stopped lecturing on lighting in favor of the new technology. He agreed to return to his Orange County roots to present his lighting workshop. I jumped at the opportunity to see this true master–portfolio in hand! I drove with my assistant down the 405 freeway in rotten LA traffic to see the show. A slow smile grew on my face as Dean spoke because I began to realize that I finally understood what he was saying! I was GETTING it! He was even gracious enough to review my portfolio with me. We lost a true genius when Dean passed away. He will always be one of my photography gurus.

The second major event was part of a presentation given by a husband and wife portrait photography team. They were talking about running a home-based studio and the light bulb went off in my head. The next day I talked to our resident manager about renting a second unit to use as a studio. They agreed to my surprise and I moved my gear out of the playhouse into a one-bedroom apartment. The living room was barely big enough to make it work, but I had worked in tiny studios before and I was tired of pulling my gear out of closets when it was convenient for the theatre owners. I was ready for my own space and would make this work. I wasn’t there very long. One of the first people I photographed in my new space was a neighbor who was better friends with our resident managers. One day she came knocking and told me that the managers were moving out of their huge three-bedroom apartment and that I HAD to see it. I said “no” but she literally dragged me over to the apartment. The place was massive and I immediately saw what she saw. I grabbed the over 2,000 square foot apartment and moved in. The living room was gigantic and became the studio. The kitchen was big enough to double as an office. I kept one of the three bedrooms for myself and made one bedroom/bathroom suite the dressing/make-up/meeting room and kept the “master bedroom” as my den. It was a great set-up and actually cost less to rent than I was paying for the two one-bedroom apartments. I was always careful to tell models that they were coming to a home based studio and they never had a concern once they saw the set-up and their own private area.

The third and perhaps most influential event happened by pure luck. The West Coast School of Photography is run by the Professional Photographers of California and produces four to five day intense workshops on various topics. I was interested in the school, but couldn’t afford to go. PPLAC had secured a scholarship for one full tuition and decided to give it away at our annual awards luncheon in the form of two half scholarships. I won both halves!

The stroke of luck did not end there. I mentioned that I was still struggling to find my niche. I still thought that I would be a portrait photographer and signed up for a four-day workshop with a renowned portraitist. Something had gone wrong with the marketing of the school for that session and there were very few registrants. The instructor canceled his class and we were told to choose a different section. There was a wedding workshop that I knew that I did not want and then there was something called “Real Life Commercial Photography with Will Crockett.” I remembered those early comments about my work being “too commercial” and decided to give this class a try. I called West Coast School to make the change and was first told that this was a very technical class and was then asked if I had the background for it!!! You’ve read about me this far, so you won’t be shocked to read that my reply was “put me in the class!”

I knew that this was the right class from the start and it effectively ended any confusion about where I was going with my photography. The class was very technical, but I loved it! Crockett, like Collins before him, was talking a language that fit the style that I always had, but hadn’t recognized. My “niche” was, and would become even more, the understanding of the technical and scientific aspects of photography. Portrait photographers often talk about “lighting ratios.” Ratios are important to understand, but I thrived on knowing what the exact exposure balance was between the light sources that made up those ratios. I was becoming a self-proclaimed “lighting geek!” I remember hearing Will comment to his first assistant that I would make a good second assistant which believe me was a major compliment. That workshop essentially changed my entire focus and I started to truly control my lighting. I stopped shooting color negative film and began to shoot transparency films. Negative films were great for creating wall portraits for families but the “tranny” was king in the commercial world. You also had to exert much greater control over your exposures because there was very little room for error–you were either spot on or you were nowhere! You could shoot a roll and do what was called a ”snip test” where the lab would cut and process the first frame or two of the film to see how close your exposures were and then “push” or “pull” the rest of the batch if you needed to compensate. I started to use a lab called A&I in downtown Los Angeles. A&I was one of the labs that the “big shots” used. There was the main lab and then down the block was the “unknown” satellite where I would see bins of film waiting to be picked up by some of the most famous photographers in town. One day I went in to pick up after a shoot and was talking to one of the employees that I had gotten to know over the years. He said that he just realized that I never ran snip tests, but all of my chromes were always perfect! It was all about control!

I became a permanent fixture at the Studio City Camera Exchange and became very close friends with the owners. Ron and I became particularly good friends. I was given access to the back room where Ron and I would talk for hours when he wasn’t going back and forth to help in the store. I could, and did, literally spend an entire Saturday in that store.  There was a huge heavy tripod that sat on the floor for a long time unsold. I wasn’t interested because I had a tripod; or so I thought. One day Robert and I were sitting in my apartment when my phone rang. It was Playboy Playmate Lisa Marie Scott. I talked to Playboy Models about testing for them and they gave Lisa my number. I shot with Lisa twice, once in the theatre studio and once in Vasquez Rocks Park. Lisa was one of the nicest ladies I’ve ever worked with and she has been very supportive of me whenever I’ve seen her after our work together ended. The Vasquez Rocks Park shoot was memorable for a very scary event. Remember, we were in a ROCK park with the operative word being ROCK! I was taking my brand new 250mm Bronica lens on its maiden voyage. The lens was close to $2,000.00. I had a bellows lens shade attached to the lens with a 35 cent home made diffusion filter. The camera and lens were mounted to what I thought was a good tripod. You already know where this is going, so I’ll cut to the chase; the tripod tipped and my camera/lens went cascading in slow motion towards the ground. It seemed like all of the air was sucked out of the park as the camera bounced on the ground. I picked the camera up to the nauseating sound of broken glass. I was about to tell my friend Dave to get the second camera and other lenses from the car when I turned the barrel of the lens; it sounded OK. I looked through the camera and it seemed to focus OK. I put on a Polaroid back on the camera, took a photograph and waited for what seemed like the longest 90 seconds of my life for the ‘roid to develop. The lens was fine. The homemade filter was the only thing that broke. The next day I walked into the camera store and said: “I don’t care what you charge me Ron, I’m taking that tripod home today!” I’ve lost touch with Lisa and very sadly lost my dear friend Ron to cancer several years ago. The Camera Exchange closed shortly afterwards.

I was fully moved into my “mansion” of an apartment by now and was “perfecting” a very consistent and reliable “commercial” lighting scheme. It worked, but my images began to take on a very familiar “look.” I had plenty of room in the studio and took my first swing at teaching some workshops. We could easily fit 4 or 5 students comfortably even when the classes involved lighting and working with models. I ran a couple of classes and a few of my students went on to become assistants and then good friends. One guy in particular probably taught me more than I taught him. Harry Lang wanted to shoot fashion and I was working within the “rules” of “commercial” photography where you “couldn’t” stray from a 1/3 stop latitude with transparency film for example. Harry quickly learned the commercial look and kept pushing the envelope–and me–by asking “Yeah, I get it, but WHAT IF…” Harry’s “what if” would eventually take me well beyond the solid foundations that Bill, Dean and Will had given me.

One of the things that surprised me about Los Angeles was the lack of major photography trade shows. I had been to a few “PhotoWest” shows, but even these productions did not seem as impressive as the ones in New York. The other smaller shows were even more disappointing to me, but I would go anyway because photography was my passion and I wanted to see what was new. I went to one such show in 1999. I walked around the small trade show a couple of times but nothing caught my eye so I headed towards the exit. I had looked forward to this show and did not want to go just yet. I saw the Photoflex booth as I got to the door and decided to kill some time talking story with the reps. Photoflex is a company that made the softboxes I was using. I started talking to a guy named Ben Clay. I’m not sure how the topic came up; I must have mentioned that I was teaching some classes and using Photoflex gear. Ben stated that Photoflex was starting a web based photography school called, appropriately, webphotoschool and asked if I would be interested in submitting a sample lesson. I did and my first professional article was published. I would write for Photoflex for a few years and through their affiliations would be published in several photography magazines. The major goal though, was still Rangefinder.

I finally summed up the courage to submit some work to the magazine that had been mandatory homework for years. I drafted a letter describing who I was and submitted some pictures for consideration. I didn’t even send them to the right person. I did, however get a very nice letter back from a gentleman named Bill Hurter. Bill was the editor of the magazine. He explained that Rangefinder did not “run” images without an accompanying story and said that he thought my “story” was interesting enough for a profile. I jumped at the opportunity and to my shock and delight my profile wound up being the cover story! My photograph was on the cover of the November 1999 issue of Rangefinder Magazine! Bill asked me to submit a lighting lesson and that, with some edits, became my first of many articles for Rangefinder. My articles were initially “how-to” pieces, but I eventually began to write profiles as well including one for my old friend Will Crockett. Bill and I went on to become friends and I credit him for helping to fine tune my writing for a professional market.

In hindsight Los Angeles was a great experience, but to be honest it never felt like home. I spent my first summer back in New York working at Bill’s studio. Neil Diamond wrote the song I Am I Said many years ago that had lyrics in it that described my feelings perfectly:

“Well I’m New York City born and raised

But nowadays, I’m lost between two shores

L.A.’s fine, but it ain’t home

New York’s home, but it ain’t mine no more.”

I spent as much time in New York when I lived in Los Angeles as I did in Los Angeles when I lived in New York! There were several times when I seriously thought of packing up and heading back East. I still had no idea that “home” would eventually be 3,000 miles in the opposite direction.

One of the models that I started to work with was from Hawai’i. I had the same fascination with Hawai’i as most “mainlanders.” It always seemed like such a foreign idea though and I never really gave it any serious thought. My talks with Michele were piquing my interest though and I began to make plans for what I envisioned would be my first and last trip to the Islands…that trip would be postponed, however.

Kienbock’s

My first experience with serious pain was when I lived in Babylon, NY. I was in what I thought was a minor car accident: a lady ran a stop sign and I hit her in my first brand new car. I had just mailed in my second payment! The damage to the car didn’t bother me; it was a machine that would get fixed. I left the scene after filing the paperwork with the police and thought nothing of it once my car got fixed. That would change rather dramatically. I developed back pain that was nothing short of excruciating. There was a bulge in my fifth lumbar disc that made walking almost impossible. There were times when it would take me 45 minutes to get from my bedroom to the couch in the living room maybe 15 feet away and that was with my roommate holding me up. I remember calling my boss from my knees and telling him that I had no idea when I would be back at work. I was at the chiropractor’s office literally twice a day and there were times when his wife had to drive me home. Fortunately my chiropractor had an elastic back brace that kept the muscles (and, I suppose, the bulging disc) in check. I could function with the brace on, but I was still in bad shape. The problem eventually got sorted out and I was back in action.

My back was better by the time I moved to Los Angeles, but I slowly became aware of something that would turn into a major problem: there was a nagging pain in my right wrist that was getting worse. I would also lose all strength in the wrist and drop what I was holding. I remember being at the gym with Robert one day when the wrist gave out. I was doing biceps curls at the time and forcefully dropped the weight to the ground. I got lucky because the weight ricocheted into the mirror but didn’t break it. It was time to find out what was wrong. The x-rays showed that I had something called Kienbock’s Disease or “Avascular Necrosis.” The lunate bone is the center bone in the wrist and mine had died because the blood didn’t flow properly to the wrist due to a slight deviation in the positioning of the forearm bones that lead into the wrist. I read a lot about the situation so I was fairly well versed by the time I found Dr. George Balfour, a hand surgeon that I liked and trusted. The co-morbidity of Cerebral Palsy and Kienbocks was thought to be very rare–in fact I think I was the first case that my doctor had ever seen. However the authors of a recent article think that the correlation is under reported (http://www.ncbi.nlm.nih.gov/pubmed/19962953). The following comment by P. Gallien, et al seems to make sense: “Although few references are made to it in literature, Kienböck’s disease in cerebral palsy is probably underestimated. Maintenance of the wrist in a permanent flexed position and muscular hypertonia may be risk factors. Knowledge of this particular clinical picture will enable it to be detected promptly and thus enable conservative treatment to be organised with a maximum chance of therapeutic success, preventing the need for surgery” (Ann Phys Rehabil Med. 2010 Mar;53(2):118-23. Epub 2009 Dec 4).

I was already at Stage 4 by the time I was diagnosed, so surgery was needed to replace the dead bone and fuse the wrist solid. They would take part of my hip bone and mash it into a putty like substance that would then re-solidify into bone to replace the lunate. A metal plate would then extend from my hand up into my forearm. My doctor had a bit of a gruff and to the point “‘bedside manner” that I actually appreciated. I figured that my wrist would hurt like hell for a while after the surgery, but I was curious about my hip. I asked my doctor how that would feel and he replied “Like Rosey Greer kicked you in the butt!” Greer was a defensive lineman for the New York Giants and Los Angeles Rams from 1955 to 1967, so I knew what he meant!!!

My parent’s couldn’t make it to Los Angeles in time for the actual surgery, so my psychology friend and colleague became “Aunt Jean” and her husband was “Uncle Stan.” Jean kept in touch with my parents during the surgery and I stayed with her until my parents arrived. I had a big balloon type cast for the first few weeks so driving was out of the question. My mom stayed a week later than my dad and drove me to work until I went down to a smaller wrap cast. Dr. Balfour was right; my hip was really sore! The wrist was tolerable with moderate pain killers and I was impatient to get behind the camera again, but that would have to wait a while. 

One thing that I had gotten good at through this experience was reading wrist x-rays. I would see Dr. Balfour at least a couple of times a year for check-ups and each check up required a new x-ray. While we were pleased with the look of the bone density as the wrist healed, I was growing concerned when I saw some of the screws that held the plate to the bones snap in half. Dr. Balfour was concerned too, but there were still some screws that were holding. Subsequent x-rays were not encouraging as we now saw some of the screws coming loose from the plate.

The wrist felt like it was healing and I was long back to work, both at the schools and the studio. It was now 1999 or so and I had my sights on visiting Hawai’i. I was also noticing something with my forearm that was very disturbing. The plate in my forearm was coming loose and I could feel and see the lump. The prescribed x-rays were finished so I had to call my insurance company to get authorization for the new x-rays and a consult with Dr. Balfour. The poor lady on the phone will probably never forget this call; she was simply doing her job, which I felt was to stall and make me go through all kinds of hoops before getting the insurance company to ok the request. I said to her “Let me explain to you what is happening. There is a plate in my forearm that has come loose. There is a visible bump in my arm that is not getting better. We either get this fixed or it is going to pop through my skin!” I had the authorization as soon as she stopped screaming!

X-ray technicians are not necessarily used to patients requesting to see the films immediately. However, this one acquiesced once I explained my experience in the matter. I took one look at the plate and asked to use the phone. He asked whom I wanted to call and I replied: “my surgeon.”

The X-rays were already posted in the lightbox when Dr. Balfour walked in. I hadn’t seen him in a while and I think my presence surprised him. He asked how I was and I pointed to the film. I think I remember hearing something like “Oooohh” as he looked at the pictures. The plate had clearly come loose from the bone. I simply asked him when the surgery would be. “Soon” was his cryptic response. I mentioned that I was planning to go to Hawai’i and asked if it could wait until I returned. He didn’t say that it couldn’t wait, but his tone convinced me; it would be another year or so before I saw Hawai’i.

The second surgery followed the same routine as round one except that my parents were there in time. Both surgeries were performed at the Northridge Medical Center. Believe me when I tell you that the Northridge Earthquake was on my mind as I went under both times. There were no shakers either time though. Once again I faced a sore hip with pictures of Rosey Greer in my mind. This time however Dr. Balfour used synthetic bone in addition to my own bone to ensure that the fusion would take. 

I was once again out of action for a while. My first attempt at a shoot was about 6 weeks after surgery and involved a 4X5 view camera. That was a bad move! Fortunately my friend Harry was on that shoot and he pretty much finished the shoot while I sulked. Those were darker days than I want to remember and my friends pulled me through. I was sour and pissed off…but I had been through it before and knew what to expect. I got better at being patient with the wrist and this time it healed properly. I did have a scare several years later when the hand hurt in Hawai’i. This time the X-rays were negative save for a minor bone spur that could be removed with arthroscopic surgery if it acted up enough. It hasn’t. There are times when I get a sharp pain through the wrist, but that has more to do with the position of my hand as it relates to my current activity. I am cautiously optimistic that my brush with Kienbock’s Disease is over.

Chapter Five: ALOHA!

I finally made that first trip to Hawai’i in August of 2000. I went to O’ahu, Maui, the Big Island and back to O’ahu. I was almost afraid to go because I had built this trip up so far in my mind that I didn’t want to be disappointed. My friend Lou had been to Hawai’i about ten years earlier and gave me a warning that I will add to. He said that I would absolutely love Hawai’i. He said that it would be more beautiful than I imagined, but I would be tired and ready to come home after two weeks. He then said (and the part I add is “if you get it”) that there would be an empty feeling in your stomach after about 6 weeks: “Those Islands will call you back!” I was back in Hawai’i for Halloween, but I am getting ahead of myself!

My first trip was amazing! I came alone and brought as much camera gear as I could manage–including that huge tripod. This was going to be my only trip to Hawai’i so I wanted to photograph it properly. My goal was to do a model shoot on all three islands and had arranged shoots on O’ahu and the Big Island. One of the ladies I worked with in Honolulu was my friend Michele’s sister Monica. I worked with two other ladies on O’ahu as well. O’ahu was intriguing. Honolulu was “the Big City” or “Town” as it is called, but there were spectacular areas within minutes. I rented a car and covered the island. I am still a “city boy” and I like Honolulu. It is a very unusual mix of old and new architecture. There are still remnants of “old Hawai’i” mixed among the modern buildings. Hawai’i was at one point in history its own Kingdom. There is an actual palace, Iolani Palace, in the middle of downtown. O’ahu is so much more than Honolulu and Waikiki. A twenty-minute drive puts you along the East Coast and the beautiful North Shore is an hour plus ride. The North Shore of O’ahu is famous for its surf spots during the winter months.

Maui was next and I actually drove the incredible Hana Highway and saw sights that were nothing short of breathtaking. The “Road to Hana” is a harrowing ride with hairpin turns and blind single lane bridges that take you up into and past the tropical rainforest and amazing waterfalls. Each turn was more beautiful than the next and I was stopping at almost every turn. I would drag out the cameras and tripod at each stop and carefully compose and expose the photographs. Remember, I wasn’t coming back to Hawai’i, so I had to get it right this time! Three or four cars would stop with the driver and or passengers getting out to snap a photo and leave before I had my first Polaroid processed. It took a long time to reach Hana! I was bummed though because I hadn’t set up a model shoot for Maui. I stayed in Lahaina and had dinner at Kimo’s on Front Street my first night in town. The hostess was a beautiful young lady and I asked my waiter to give her my business card and tell her that I was only on Maui for a few days. She stopped by my table and agreed to meet me in the lobby of my hotel so I could show her my portfolio. The next day was the Hana trip. At the time there was little cell phone reception.  There was a message on my phone from her when I returned to an area that had reception: she wanted to shoot! Sanna and I shot the next day at Kaanapali Beach. She and I would go on to shoot together for several years and became good friends.

The Big Island was so very different. It would take me a few years to truly appreciate its unique qualities and beauty. This trip was too short, but I drove around most of the island and ironically had better weather in Hilo than Kona. I would learn later that Hilo is usually very wet, but this time the downpour was Kona side while Hilo was beautiful. Rainbow Falls in Hilo is one of the most spectacular sights I’ve ever seen. I worked with Kristina and Tianne while in Hilo. It was then back to O’ahu to end my whirlwind tour of Hawai’i. My trip ended with two photo shoots with Kathryn and Katinia and then with Monica. Images of Monica and Kathryn became my first two covers for THIS WEEK Magazine, a very popular visitor magazine in Hawai’i.

I was, as Lou predicted, tired, satisfied and ready to go home when the hotel door closed behind me. I barely had time to unpack though when I was on the phone to my travel agent to book my next trip! This trip consisted of a return to O’ahu and a visit to Kaua’i. I fell in love with Kaua’i immediately and it is still my favorite island. It is hard to explain, but Kaua’i to me is as different from O’ahu as O’ahu is from the Mainland. The feeling that I have when I am on Kaua’i is magical. The sheer beauty of that island is staggering. I met one of my best friends on that first trip.

We have all heard of “love at first sight,” but is it possible to become very good friends at first sight? I know that it is possible. I was sitting at The Sand Bar, the pool bar at the Islander on the Beach in Kapaa and I met a guy who was a chef at a local restaurant. We were talking about what I was doing there and I mentioned my goal of doing a model shoot on every island. He called his friend Nikki and she came by to have a drink with us. We agreed to meet up in Princeville the next day to shoot and became fast friends. Nikki and I would be inseparable buddies for the next 6 or 7 years. There was never any romantic involvement but we were there for each other through good times and some very rough roads. I stayed with her in Princeville every time I returned to Kaua’i until Nikki moved back to the mainland four years ago. We have sadly lost touch…for now.

Sanna was going to school in San Diego and would venture up the coast on occasion for a photo shoot and one of these shoots resulted in another THIS WEEK Cover. Hawai’i was definitely getting under my skin though and I placed another call to my travel agent!! I returned for my third visit to O’ahu and second to Kaua’i in April, 2001. I remember landing on Kaua’i vividly. I got into my rental car and turned right onto Kuhio Highway towards Kapaa and said out loud to myself “I’m home!” I knew that this is where I belonged, but I still had no idea of how to do it. I had looked into jobs and Monica drove me around Honolulu to look at places to live, but the idea of moving was still a fantasy so I began to think of ways to split time between Los Angeles and Hawai’i. This trip yielded two more covers, one featuring Nikki, so I was becoming known at THIS WEEK. The art director even agreed to an interview for one of my other articles. I returned to Los Angeles and set my mind to getting over to Hawai’i more often.

I was back again in July, 2001 but this time my friend Lou joined me. Kaua’i was of course on the agenda with another stay at The Islander On The Beach. The Islander was becoming my home away from home. The pool bar is an amazingly unique little bar where people from all over the world converge and spend the nights talking story. My network of contacts and friends in Hawai’i was slowly growing and this trip added one more. Lou and I struck up a conversation with another Lou from O’ahu. This Lou was also from New York originally so there was a lot in common. Lou (Hawai’i) is a friend 10 years later. I also added one more “unusual” activity to my list this time. Lou (Rutgers) and I booked a kayak trip up the Wailua River. The trip also included a hike to a waterfall. The tour guide was visibly concerned when he picked us up at the hotel. One more time there was someone who didn’t quite know what to do with me! We convinced him that all was OK and he took us. We cruised a little ahead of the group to the hike portion of the trip. The truth is that the hike was a bit much and we sat along the trail until the rest of the group came back. We made up for it on the return trip up the river! We hit the water and never looked back. We got to home base 45 minutes before the tour. The tour guide, who five hours earlier didn’t want to take me, shook his head at us and said: “First time, huh? You guys SMOKED that river!”

I came up with an idea that would combine my teaching photography with traveling to Hawai’i. The idea was to run photo tours from LA to O’ahu and Kaua’i. I spent the rest of that summer planning and plotting the logistics and price points. I had the hotels lined up, travel arrangements, models and even luaus on board. I made my plans for my fifth trip for October to meet with those involved and finalize the logistics. An event occurred in the interim that wouldn’t derail my plans, but would certainly put a damper on that and many other things in America and the world.

September 11, 2001 was a Tuesday morning like many other Tuesdays. I was headed down the hallway to my den that had my private shower in it. The phone rang. I thought it was strange for my phone to ring at that hour. It was even stranger to hear my Aunt Maggie’s voice on the other end. My aunt and uncle lived about two and one-half hours North of me in Bakersfield, California. The conversation went something like:

Hi Steve, are you watching the news?

Hi Maggie, no, why?

Put the TV on.

Why?

PUT THE TV ON!

I don’t remember if the second tower of the World Trade Center had been hit yet–I think it had, but both towers were still up. I hung up and called home and got my mom:

Hi Mom, are you watching the news?

Hi Steve, no, why?

Put the TV on.

Why?

PUT THE TV ON!

It was the exact same conversation. We stayed on the phone and watched the first tower fall. It got to the point where I couldn’t watch anymore and took a shower. The second tower fell in the interim. I called Terry and he said that “New York is under some kind of attack and no one knows what is happening. I’m going down to see if I can help.” He wasn’t allowed to get to the site, but he went down. By now news of the Pentagon and Pennsylvania hit. I was numb and felt claustrophobic in my big apartment and decided to go to work; I could not stay at home any longer. I learned another lesson about intellectually disability that day. There was a young girl in my school who was profoundly physically disabled and moderately to severely intellectually disabled. She was beautiful though and would always stiffen up and try to smile when she saw me; her eyes would cross and her tongue would stick out when she smiled. She would also fuss if she were ignored. I was walking around campus in a fog when I heard her vocalize. I looked over to see her precious smile complete with extended tongue. I went over as her body stiffened I said to her “Hola chiquita bonita (hello pretty girl), you have no idea what just happened do you? All you want and need is to be cared for and loved, don’tcha?” Her crossed eyes and stuck out tongue said it all. I truly wondered at that moment if her world wasn’t the better option. The entire world had changed forever and she didn’t know or care. One of the staff members saw me in the hallway and was trying to be supportive, but said the exact worst thing possible. She said: “I bet you are glad that you aren’t in New York right now.” I replied that, no, in fact I had never felt as out of place as I did right then. My home was under attack and I was nowhere near it. I belonged in New York with my family and I was too far away. I caught her by surprise and think I hurt her feelings. I seem to recall the two of us straightening it out over the next few days.

The day would become even more surreal. I went to a meeting with the administration and some parents because, well because I had to do SOMETHING. I walked in still feeling numb and my principal asked if I was OK and I nodded. I explained to the parents that I was from New York and was waiting for any information from home and asked for permission to keep my phone on. Of course that was not a problem. My phone did ring during the meeting and I answered, paused, and then all but collapsed; my cousin’s husband was the pilot of the plane that hit the second tower. I had wanted to get home, but now I had to.

My travel agent and I were now on a first name basis from all of the Hawai’i bookings. I called her and said “Michelle, you have to get me to New York!” She tried and we talked every day for 5 or 6 days, but all flights were grounded and an Amtrak train cross-country just wasn’t feasible. Michelle came through and got me on the first redeye flight to Philadelphia just in time to make the service. My old roommate Jim had moved back to Philly and took the morning off from work to drive me the hour or so to my cousin’s town. I wrote the following article for the PPLAC newsletter upon my return to Los Angeles. It still summarizes my thoughts and emotions at the time the best:

In A New York Minute

Don Henley wrote “In a New York minute, everything can change. In a New York minute, things can get pretty strange.” These words certainly ring true for all of us after the bizarre and tragic events that took place on September 11, 2001. Unfortunately for my family, things got even stranger later in the day. It was confirmed by mid-afternoon that my cousin’s husband was the pilot of United Airlines flight 175—the plane that hit the second World Trade Center tower. After several numb and frustrating days of trying to get back East, I managed to get a flight to Philadelphia on Monday the 17^th and made it to the memorial service on Tuesday morning.

As many of you know, I am a born and raised New Yorker. I obviously knew that what happened to my hometown was real, but I still felt too far removed from it to believe—or accept the horrific realities. The reality of the attacks began to set in on my way to the airport. The experience of an almost empty LAX at 7:00 on a Monday evening was bizarre beyond words. The overwhelming sensation was not of dread, but of resignation. Something awful had really occurred. It wasn’t some Hollywood display of special effects in a miniseries that ran too long.

The next morning brought another harsh reality. Like so many others, my cousin had lost a husband and her daughters had lost a dad. The service was quite an experience. The church holds about 1,200 people and it was standing room only. We counted between 50 and 60 members of my immediate family, so it was a good show of familial solidarity. The most heart-wrenching moment of the service was when my 13-year-old cousin read a poem she had written for her dad just two weeks before he died. She then went on to sing Sarah McLachlan’s “I Will Remember You.” We were all so proud of her strength at an unbelievable time. A reception followed that gave the family a chance to get reacquainted with each other.

The profound loss of life is obviously the most horrifying part of these attacks. There are other losses as well. We have lost one of our nation’s symbols of financial strength and our symbol of military strength was severely damaged. A large part of our innocence was shattered too. We can also talk about lost opportunities and the consequences of taking things for granted. On a somewhat superficial level, I passed on many opportunities to photograph those two beautiful buildings because I took it for granted that they would be there “next time.” At a deeper level I have reflected on opportunities that have slipped by because I was afraid to take a chance. One of the lines from “I Will Remember You” reads: “Don’t let your life pass you by, weep not for the memories.” Whenever we let an opportunity pass us by—whether it is in our personal lives or professional worlds—for whatever the reason [“Oh, I’ll tell her how I feel next time.” “I am not going to show my portfolio—they’d never hire me anyway.” “I couldn’t charge THAT much for my work.” “I’m not ready to enter print competition!”], we are letting our lives pass us by.

“I’m so tired

But I can’t sleep

Standing on the edge

Of Something

Much too deep

It’s funny how we feel so much

But we cannot say a word

We are screaming inside

But we can’t be heard

And I will remember you

Will you remember me?

Don’t let your life

Pass you by

Weep not for the memories”

–Sarah McLachlan

–End

It was truly a bizarre time in all of our lives. Somehow we all had to move on…and we did. It was a time to mourn, but also a time to realize that life is short and fragile. Pursue your dreams today because tomorrow is not guaranteed. I was reminded of that fact three hours before writing this paragraph; a gentle and kind young man who worked in my building passed away this week. The lessons are out there: it is up to us to heed them.

My first bit of business was to assure my contacts in Hawai’i that my trip was still on; I would see them in October. I arrived to a naturally subdued Honolulu. I remember that the New York Yankees were playing in the World Series that year. I grew up as a Mets fan, so the Yankees were the “hated” cross-town rivals. Well, not that year. I stopped whenever I could to catch part of a game on TV. I met Monica for dinner one night and became glued to the bar TV on the way in. The Yankees lost that game and the Series and Monica and I went on to have a nice dinner any way. The rest of that trip is sort of a blur, but I got the information I needed and returned to Los Angeles with renewed dreams. The dream of starting my own tour company fizzled for the time being as I hit a marketing wall. I, like many of us, have had many ideas not make it off the drawing board. This idea, however, would be revisited down the road.

There was something else that was happening during this time frame. I had developed a nagging dry cough that would flair up mostly in the evenings. It made for interesting dinner dates! I remember one dinner date at Casa Vega that was particularly unpleasant. Obviously I didn’t see her again! My doctor in LA couldn’t find anything wrong. My lungs were consistently clear. I went to an allergist/specialist for further evaluation. I was told that I had asthma. I said that I was never short of breath and never wheezed. The doctor told me that 20% of asthmatics only had a cough. I went on two asthma medications for two years with no real effect. My hunch is that they didn’t work because I didn’t have asthma. I was working in the East Covina Valley. The East Valley bumped up against the San Bernadino Mountains. Southern California is unfortunately known for its smog. The offshore breezes keep the smog from blowing out to sea on the West and the Santa Monica and San Bernadino mountains keep in from dissipating to the East. The smog gets thicker the further East you go. I am convinced that I had developed a reaction to the smog and stopped taking the steroids after two years. The cough was gone within 6 weeks of moving to Hawai’i.

Something told me that my time in Los Angeles was growing short, but I still hadn’t made the “big decision” to make the move to Hawai’i. The idea of going back to New York was gaining steam. I remember leaving for the airport from Nikki’s house one time after concluding that a move to Hawai’i wasn’t feasible. I was on the road thinking to myself: “Oh get over it, you aren’t moving here!” The realties of leaving Los Angeles were taking hold and as I mentioned, New York was weighing heavy on my mind. I placed another call to Michelle (“AGAIN!!!”) to book my “farewell” trip to Hawai’i. I didn’t see myself getting there very often from New York. I got to Hawai’i and realized that I wasn’t moving back to New York.

I had established a growing network of acquaintances and friends over the past year and a half and had a pretty good idea of how to get around O’ahu and Kaua’i. One of the recent trips introduced me to a guy who would become my best friend in Hawai’i. I met Max at a bar called the “Deep End” in the Maile Sky Court. I stayed at the Sky Court every time after my first visit. The Deep End was a small watering hole that catered to tourists and a loyal bunch of regular “locals.” It, like the Sand Bar on Kaua’i, was always a good place to meet people and unwind after a day of sightseeing or working. I happened to sit next to Max one day and we struck up a conversation. He said that he owned a small dive company called Manini Dive Company Hawai’i and that he was an underwater photographer. I went up to my room and got my portfolio and our friendship was off and running. Max was also talking about taking me SCUBA diving but that didn’t happen yet.

The Big Move

The question now became “How do I do this? How can I pull off a move to Hawai’i?” I had met one of my uncle’s cousins on O’ahu and his girlfriend. Charlie was an airline pilot and Lee was an artist. We started talking about ways that I could make a living here. The wall that separated the Honolulu Zoo from Kapiolani Park doubled as an art exhibit and sales area on the weekend. One idea was to create matted prints and sell them on the wall. Another idea was to offer consultation services to the State of Hawai’i Department of Education while also consulting in California. I had been co-training with Jean for a number of years and had a couple of solo clients as well. Jean and I were writing our book and she was getting ready to retire. I eventually took over the training duties at LACOE. My main idea was, of course, to make the majority of my income through photography. I thought that my work would stand out more in the smaller market of Honolulu than it had in Los Angeles. I didn’t realize at the time that it takes a very long time to go from “malahini” (visitor) to “kama’aina” (local or “from the land”) in Hawai’i. It was the summer of 2002 and my plans were beginning to take shape. Now I needed to make the commitment. I also needed to book two more trips.

I once again called Michelle at AAA. This time I said: “Hey Michelle! Guess what?” She said: “You are moving to Hawai’i!” I said: “Yes I am.” She replied with: “It’s about time!” Michelle was from O’ahu so I think she recognized and understood how I felt about Hawai’i. The trip to organize the details like looking for a place to live and work was set for November. I would then fly from LA to NY in December and start my life in the Islands in early January. The O’ahu portion of the trip was productive. I met with the Director of Special Education for the Department of Education and another lady. Jean, the second lady, had spent some time in Southern California and knew of the Ordinal Scales and there seemed to be some interest in working with me. Max was also instrumental in helping me find a condominium in Waikiki that was very reasonably priced. The realtor said that the current tenant was a University of Hawai’i student who was leaving at the end of December. I was scheduled to arrive on January 8th and the owner said that the week hiatus was okay. I had a condo and what I thought was a lead on some consulting work, so this thing was actually happening! I took off for Kaua’i where I wrote one of my last editorials for the PPLAC Reflector on that trip describing my emotions:

Aloha from Kaua’i! I thought I’d take a moment as my two-week tour of the Hawaiian Islands winds down to write this while the ideas and emotions are still fresh in my mind. As you know, Hawai’i will soon be my home. I got on the plane filled with anticipation about how I would view O’ahu from the viewpoint of “home” rather than “vacation.” The trip started off as crazy as ever as I literally dropped my suitcase off at the hotel and picked up a model to go to O’ahu’s beautiful North Shore for a photo shoot. The weather in Hawai’i is very unpredictable and what was a nice day quickly turned cloudy and shortened the shoot. She met her boyfriend at the shoot, so I was on my own for the return trip to Waikiki…or so I thought. I soon ran into a couple of close and dear friends of mine on the return trip. “Fear” dropped by to say “Aloha,” and was quickly followed by “Self-doubt.”

“Change” has been a common theme over the past year. Ralf spoke of change at PPOC and David Bayles showed us how he took a photojournalistic look at the changes that have chronicled his life. I have addressed the topic several times in my articles. It is quite easy to say: “Yes, I’ve decided to change this or that.” What is often forgotten is that change is difficult. Somewhere in the process our old friends “fear” and “self-doubt” are going to come knocking to see if they can join the party. As George Lucas’ character Yoda might say “Fear and self-doubt, powerful allies are they.” They can, in fact, completely derail our best intentions to make changes in our lives and businesses.

The confusing part is that fear and self-doubt can be our best allies as well as worst enemies. They often play a critical role in maintaining our safety—physical and emotional as well as social and financial. It is rational fear that tells me “Yeah, the idea of jumping waterfalls is pretty wild, but it is probably something that I would be better off not doing!” Rational fear has a distinct role in our self-preservation—and can actual help us to make successful changes. Irrational fears and self-doubt paralyze us and fight to maintain the status quo—even when the status quo has long ago stopped working for us [and hence the desire to change]. 

What is the difference between the two types of fear, how do we recognize the difference and what do we do about them? Rational fears are realistic: “Will I be able to find the clientele to support my shift from portraiture to weddings, or vice versa.” “I am leaving a guaranteed income in Los Angeles to freelance in Honolulu—how am I going to make the money to survive?” These are examples of rational fears that need to be addressed before any successful change is made. Irrational fears are largely invented in our own nutty heads and are often extensions of rational fears. 

Rational fears can lead to game plans and action. As I mentioned earlier, they are partly responsible for our self-preservation. Rational fears are what kept me from buying one-way ticket from LA to Honolulu in May when I made the decision to move. They are the ones that said: “Ok, you are moving. What are you going to do and how are you going to do it?” Rational fears lead to questions that need to be answered…and yes, rational fears can impede change. However, change that is halted due to a clear minded review of the questions raised by rational fears probably indicates that we were not ready to make those changes. Irrational fears are laden with emotion rather than logic and normally stem from our views of failure. While rational fears can lead to a plan of action, it is the irrational ones that scream “I CAN’T DO THIS!!! What if I FAIL???!!!” The good news is that rational fears are fairly easy to deal with. The bad news is that because irrational fears are largely our own inventions, they are extremely difficult to put aside. They fly in the face of logic, because we invented them out of illogic. 

So, what do we do about our friends fear and self-doubt. One answer largely lies in what Ralf spoke about. Come up with a plan of action and WRITE IT DOWN. I will go one step further and suggest that you listen to your fears and WRITE THOSE DOWN TOO! ALL of them—even the most absurd. This will help you distinguish between what is rational and what is irrational. Look at your list of self-doubts and reorganize them into the ones that lead to distinct and answerable questions and those that lead to physical or somatic reactions. Take EACH of the rational fears and write down the questions that stem from them and ANSWER the questions. Come up with clear and concise plans to address each concern. Once a logical game plan has been written for each question, return to the list of irrational fears and see if your reaction has changed at all. If you have dealt with the rational fears adequately, then the irrational ones will diminish—but never disappear, they are part of being human! When each of the rational fears is addressed, then you are ready make your change and deal with our biggest challenge: SUCCESS!

–END

My bosses at LACOE knew that I was planning to move–I say “bosses” because I believe that the principal of every school that I am in is my boss for as long as I am on their campus as well as my main supervisor/boss. Quinn had been my immediate boss for almost six years. She and I had a somewhat rocky start, but the relationship grew into one of mutual respect and camaraderie. I really enjoyed the rare opportunities to sit and talk story with her. While my main duties were with Quinn and her schools, I was also building my reputation as a consultant all over Los Angeles County. I doubt that she was happy that I was “on loan” once a week or so, but she accepted it. Quinn cared deeply for her staff. I remember a time when I was faced with a tough personal dilemma. My office was across the hall from the Occupational Therapy offices. Some of the many things that occupational therapists do is help kids with physical and cognitive disabilities develop better fine motor control that helps with life skills like buttoning clothes and school activities like writing. I would see many of the students come in from other campuses even when they were not on my caseload.

There was one little girl who would show up for her weekly OT sessions and I would talk to her mom while the girl worked on her skills. The mom was a super sweet lady from Mexico. I did not speak Spanish but she spoke enough English that we could talk. I began to look forward to these sessions and started to realize that I was developing feelings that were beyond a professional interest in this lady. “This is ridiculous,” I thought. I was probably around 38 years old then and I knew that while I worked with children professionally, I was not interested in raising my own kids–especially a youngster that I would potentially work with in the schools. There were all kinds of ethical issues floating around my head–and yet, there I was, waiting for mom to show up with butterflies in my stomach like a teenager with his first crush! At that point I hadn’t worked directly with the girl.

I knew that I had to talk to someone so one day I caught Quinn alone in her office and asked for a few minutes. Her interest peaked when I closed the door. I don’t remember the exact conversation but I said something like “I think I am starting to have a problem. I’m beginning to have stronger feelings for a parent than I want to and I’m not sure what to do about it.” Quinn sat back in her chair, smiled and said: “It is ‘Louisa?’” (Louisa wasn’t her name) I was floored at either how perceptive she was–or how obvious my crush was, but I acknowledged that yes it was this lady. She could have lectured me about keeping personal and professional feelings separate or beaten me up with the ethical implications, etc., but she didn’t. She commented instead on what a beautiful person Louisa was and asked me what I was going to do. We talked for a while and the outcome was to just see where, if anywhere, this would lead. The situation resolved itself when she didn’t show up for an OT appointment. The family had picked up and moved. I never saw her again.

The point of that story was that Quinn also knew that I was growing more and more unhappy where I was and she wholeheartedly supported my move to Hawai’i. The staff even threw an “Aloha” party for me when the time came. In the meantime, I was talking to my main boss about firming up a contract to return to Los Angeles for training sessions over the next year.

One of the last things that I did as a resident of Los Angeles was to have a farewell lunch with Bill Hurter from Rangefinder. Bill had begun writing photography books for Amherst Media and had used several of my images for these publications. We were talking about where I was going in photography and he suggested that I submit an outline for a book to Amherst. I said that I didn’t know how to write a book! Bill said that I had already written a lot of articles for various magazines so I just needed to reorganize them in sequence, figure out what I needed to add, then shoot it and write about it. He made it sound doable, so I agreed. The idea for Lighting Techniques for Fashion and Glamour Photography for Digital and Film Photographers was born.

The moving date was closing in and the task of packing up a 2,000 square foot apartment was daunting to say the least. Closets have a way of accumulating stuff over the years. I had six years of junk all over my closets. I had to learn to be ruthless about what to keep and what to toss. The first of two big days arrived and John followed me as I drove a fully packed car down to the Long Beach docks. My car was going on a Matson ship bound for Honolulu. There was no turning back. My photo buddies were there to help pack up what was left of my stuff and the moving company showed up to haul everything away. I got on a plane for New York nine days shy of my ninth anniversary in Los Angeles. I left LA with a sense of disappointment; I knew that I had done some very good work for LACOE and the Pasadena Schools, but I hadn’t “made it” in photography. I had tried every marketing trick in the book from postcards and direct mail to walking door to door up and down Ventura Boulevard talking to merchants or through the fashion district to trading photographs for advertising space in local magazines. You name it; I tried it. I had amassed a significant credit card debt (including, in all fairness, part of my car). I felt that I had failed. I was, at the time, blending my view of my photography, my business and worst of all, me into one bowl. My business was an absolute failure at that point. There was no arguing the profit/loss statements. However, I had turned this into the idea that I was also a failure as a photographer. It gets worse. Photography had been my passion for most of my life: it was part of who I was. So, I took it further. I was a failure as a photographer, so therefore I was a failure.

I realize now of course that that was complete nonsense. Yes, my business was a money loser, but my photography was actually quite good. My “story” and photography was even a cover feature written by Eric Slater of the Los Angeles Times Metro Section called “Picture of Determination.” More importantly, I realized that neither the success of my business nor the quality of my photographs had anything to do with my value as a person. Our value as humans has nothing to do with accomplishments, successes or struggles. I had worked for almost six years with kids who were in horrific situations where my work was on getting them to rate the situation, their physical disabilities for example, as bad, but not themselves. Here I was doing the exact thing that I had coached them not to do. That tendency is simply an annoying part of being human and I had to remind myself to “rate the situation, not yourself.” In hindsight I can see that my time in Los Angeles was critical to where I am now and what I am doing.

I spent Christmas with my parents full of anticipation and a healthy dose of anxiety. The really big day finally arrived and my parents once again took me to the airport just as they had nine years earlier. This would be a much longer trip and one filled with dreams and uncertainty. I actually had a job waiting for me in Los Angeles. I had plans and ideas, but nothing firm in Honolulu. It was a complete leap of faith that almost blew up in my face within a few months. I added a couple thousand dollars to my credit card to get me to Hawai’i and reality came knocking loud and hard.

Max was there to meet me in Honolulu and I had to spend one more night at the Maile Sky Court before getting the keys to my condo the next day. I moved into the Aloha Lani building on January 9, 2003. My new home was in the dead center of Waikiki, two blocks from one of the most famous beaches in the world. My apartment was on the 32nd floor, just below the Penthouses so my views were amazing. The living room faced the mountains. I had the end unit so the bedroom window faced West, rather than South so it was a “partial ocean view.” The corridor leading to my unit, however, was outdoors and faced Waikiki and the beach. It wasn’t a bad view going back and forth to the elevators.

I knew that the condo was small, but I had no idea how small until my stuff arrived from Los Angeles! I thought that I had done a good job of paring down my things, but 413 square feet was nothing compared to 2,000 square feet! I literally had a very narrow pathway to get through the boxes from my bedroom to the bathroom to any place to sit in the living room. Most of my world went into storage and was eventually thrown out. So much for memories and history!

The first year was very tough. Most of my plans were not coming to fruition. The thing that kept me going was my contract with LACOE. I flew back to LA within a few months for a two-week training run which kept me afloat for a while. I had done one consultation case with the Hawai’i DOE but they were not biting on my longer-term consultation offers and I had used the last of that year’s LACOE contract. A new bid would have to be submitted for the new fiscal year. The California financial bubble had just burst, so the other districts where I was courting contracts dried up. The more frightening fact was that the LACOE contracts were no longer guaranteed. I remember one day vividly: I was alone in my apartment looking at my financial statements and the walls were closing in. It was a Tuesday and I was at the end of my rope. I told myself that I was finished if the new LACOE contract didn’t come through by Friday. I was freaking out. The idea of packing again and returning to either LA or New York with my tail between my legs was unbearable. I was thinking that I had screwed up royally this time when something unbelievable happened. It was small, but somehow very meaningful to me. I turned to my window to see a huge beautiful rainbow arching over the Manoa valley. It had an instantly calming effect and I grabbed my camera and took a photograph. Somehow I knew that it would work out. My next LACOE contract came through that week. I also called the Hawai’i DOE one last time. I was not offered a consulting contract, but was told that there was a District School Psychologist position available on the Leeward Coast if I was interested. It’s funny how unwanted options become palatable when your back is against the wall. I knew that the LACOE job was on its last legs so I accepted the Leeward position.

The Leeward District is comprised of six “complexes” or towns with a high school and its middle and elementary schools. My area was now Pearl City, Waipahu, Ewa/Ewa Beach, Kapolei, Nanakuli and Waianae. This area comprised an extremely diverse set of cultural influences including a very large Native Hawaiian population. I was reading about Hawaiian history almost exclusively since moving here. Hawaiian history fascinated and fascinates me, especially The Monarch Years. “Shoal of Time,” by Gavin Daws, was by far the fairest and most unbiased account of the “recent” history of Hawai’i. “Hawai’I,” by James Michener, was a great fictionalized story based on historical data too. I’ve also enjoyed the historical fictions “Molokai” and “Honolulu,” by Alan Brennert. O.A. Bushnell’s take on Hansen’s Disease (Leprosy) and Molokai was a tougher read and much more graphic, but very good as well. His “Kaaawa” was a good read too. I was intrigued with the idea of working on “The Waianae Coast” and I have met so many wonderful people out there.

My introduction to Waianae was not a happy one though. I had just been introduced to my fellow school and clinical psychologists and was scheduled to attend some more introductory meetings the next day. Those plans changed while watching the 10:00 news: There had been a car accident in Waianae and a young girl died. She was a recent graduate from the high school. It was time to put on my grief counseling hat and head West. I spent three days that week at the high school working with a bunch of kids/young adults trying to figure this stuff out. It was not any easier this time than in my past experiences, nor would it be my last experience. 

The Leeward Coast was essentially unchartered territory for me and I was on the phone to our secretary a lot that first year! She would ask: “Are you lost again? Where are you?” I’d struggle with the street signs: “I don’t know…Ka…ahma…noe?” (Laughter) “Kaahumanu?” “Yeah, I think so!” “OK, go…” I eventually found my way around to my 40+ schools. My experiences and expertise became useful in my new home as well. Part of my duties now include consulting with schools and conducting assessments on kids with very severe disabilities–that first job of mine followed me to Los Angeles and on to Hawai’i! My goal of consulting with the State of Hawai’i sort of worked out because my boss is very good about “lending me out” to other districts on O’ahu and on outer islands. I’ve been called over to the Big Island and even my beloved Kaua’i to work on cases.

The trip to the Big Island was special for a different reason. Lee’s son Tim worked at one of the telescopes that are on the top of Mauna Kea. The Big Island boasts the world’s two largest mountains. Mt. Everest is the tallest mountain from sea level to summit, but Mauna Kea is the tallest mountain from sea surface to summit. Her sister volcano Mauna Loa is the largest mountain by girth in the world. Mauna Kea’s unique position in the world makes it one of the best places to search into space and holds many of the best telescopes ever built. It is a truly multi-national community at the summit. I booked a trip to the summit with camera in hand and had the very unique opportunity to see the inside of one of those scopes with Tim. Just being able to say that I stood on the tallest mountain in the world is amazing! It also wasn’t easy. The thin air that high really takes a toll and I found it hard to move around after a little while. I still wouldn’t trade the experience though.

I now was back to a full time job but my financial concerns were far from over. The cost of living in Honolulu is comparable to LA and New York, but the salaries are much lower. Granted that I had a ten-month contract rather than my eleven-month job in LA, but I was making $30,000.00 less for the DOE than for LACOE. I still had a whopping credit card bill and was barely treading water. LACOE still helped for that second year, but the writing was on the wall; that ship had sailed. There were no more funds to offer any more contracts and I was still upside down. My phone rang. It was Jean from the DOE–or formally from the DOE. Jean’s other passion was establishing School Psychology programs at various universities across the country. She had started a program at Argosy University in Honolulu and asked if I would teach some classes. It was the start of an interesting relationship that lasted six years. Initially I taught Cognitive Behavior Therapy and an advanced assessment course. I began to re-evaluate the benefit of standardized measures during this time and taught sort of a hybrid approach to assessments. I now see that both methods have merit and at times the best assessments combine my version of Piaget with more “standard” methodologies. I also ran the practicum and later internship seminars. There were a number of personnel changes at the top of the program and I became my students’ unofficial advisor and mentor–at least that is what they told me. Eventually I became their “official” advisor. I expanded my teaching and took on an adjunct position in a Masters of Counseling program at Chaminade University in Honolulu. The School Psychology program at Argosy ended, but I still teach a Counseling Theories class at Chaminade. I told Lou from Los Angeles that I was teaching graduate school and his response was one of the biggest compliments I’ve ever received; he simply said: “I always knew you’d become a college professor!”

Let’s back up a bit. I did a lot more than just panic that first year! One of the first things that I had to do was to get a Hawai’i Drivers License. I had just renewed my California license, but I lived in Hawai’i now so I wanted the local license. I had had unpleasant experiences with DMVs before—the California Division of Motor Vehicles made me take another road test to get my license–and I wasn’t looking forward to this visit. Sure enough the switch would not be made easily. I was required to get medical clearance to obtain my Hawai’i license. I argued against the absurdity and unfairness of the policy to no avail. The following conversation actually took place:

DMV: Oh, but your California license is valid for another six years. Why not just use that one?

Me: Let me get this straight. I can use this piece of plastic from California and drive legally on your streets without medical clearance?

DMV: Yes.

Me: OK, but if I want to trade this plastic for one that says “Hawai’i,” I have to get medical clearance to drive legally on your streets?”

DMV: Uh huh!

Me: Do you see how ridicu–oh never mind!

I had no more luck with the supervisor. I left shaking my head and eventually found a physician to “clear”’ me and got my Hawai’i license. I found him through Lee and have been very happy with him, so the DMV experience paid off. My doctor was as stunned at the stupidity of the situation as I was. He asked me how long I had been driving and I replied “twenty-four years!” He waved me off as I went to pay him.

The next task was to find a studio. I placed a flyer up at a local lab and got one phone call. I met a guy named Stan Cox of Paramount Photography Hawai’i and went to see his studio. I did use it on a rare occasion, but I wasn’t getting enough work to make it beneficial for either of us, but I had made another contact in Hawai’i and went on to be co-Best Man at Stan and his wife Amanda’s wedding. Stan and I would collaborate on several projects over the years and he is one of the instructors at my Hawai’i School of Photography.

I had joined the Professional Photographers of Hawai’i and was getting to know some of the members. A few members were particularly interested in digital photography and were scheduling smaller “talk story” sessions. I went to my first meeting and as we were breaking down one of the guys said “Oh, I have to leave the Islands for a while. I belong to studio hui (share) and I have to find someone to replace me. Does anyone know someone who is looking for a part-time studio?” I kid you not–that actually happened! I JUMPED at the chance and called his friend Brett the next day.

The space was massive! It was a huge room in a warehouse by the old Dole Pineapple Cannery in Iwilei. I’ve never seen a larger studio and I was looking to become a member of this hui. Brett and I hit it off right away and I think I wrote my first check on the spot. It’s has been a great situation and relationship ever since. All my stuff came out of storage and went either into the studio or in the basement. There were five of us sharing the studio and we had plenty of room to keep all of our gear set-up and props galore! It was a photographer’s dream playroom. You could shoot against a plain backdrop or build an elaborate set and we did both. We had to move to a much smaller space since I joined though. The building was sold and the new owners wanted to triple the rent! All that stuff that was stored in the basement and a lot of what was in the studio wound up in the dumpsters behind the building. It was a sad day because a lot of what was thrown out were large prints of my early photographs, so part of my history went into that dumpster. Oh well, time to move on. We’ve been in our “new” space in Chinatown for over four years now. Brett and I are the only remnants from the Iwilei hui, but we have a great bunch of “new” guys involved.

I found the studio just in time because Amherst Media approved my outline; I was writing a photography book! This still blows me away. I spent hours and days and months pouring over and highlighting photography books growing up and now I was writing one. Some of the book was made up of images that were used in previous articles, but a lot of it was fresh. Lighting Techniques for Fashion and Glamour Photography for Film and Digital Photographers was published in December 2004. I was writing what would become Mastering Lighting Techniques for Outdoor and Location Digital Portrait Photography when I got an email from PCPhoto Magazine. They had seen my first book and asked if I would write an article for the magazine on how to use a softbox. I wrote the article and I received an email from my publisher while Outdoor Lighting was in production. Craig said that he had seen the PCPhoto article and asked if I could turn that into a full book on using softboxes. (Note: Softboxes are very popular tools to modify artificial light for photography or videography) “Sure” I said, thinking to myself “How the heck are you going to take a four page article and turn it into a full book?” It turned out to be a great assignment! Outdoor Lighting was released in 2006 and I was at work creating and writing about every possible combination of light modifiers that I had access too. I learned a huge amount by writing that book. Softbox Lighting Techniques for Professional Photographers was published in 2007.

I took a short hiatus from producing books, but kept writing. I think I was in New York visiting when I received an email from a guy named Cris Mitchell. I had produced a few articles for Will Crockett’s Shootsmarter.com website. Cris was starting a new online photography forum/ezine called www.prophotoresource.com and was looking for authors. He was a friend of Will Crockett’s and Will suggested that he write to me. At last count Cris has published 60 of my articles over the last 5 years. Cris and I hit it off on several levels. His brother has cerebral palsy and we’ve had many discussions about that as well as photography related and many other topics.

One of the best things about being part of network of photographers and writers is the opportunity to share ideas and build camaraderie. I suppose that that is true of any profession. I know that I have made great friends in my psychology career too but somehow it is different when it is your passion. My network already included Paul Gero, whom I met way back when in Will’s West Coast School course and Paul Landry, a former student and assistant. Both Pauls are amazing photographers. I met Chris Grey through Cris Mitchell. Chris (Grey) had the best selling book in Amherst history at the time. He started writing for ProPhotoResource too and we started talking online. His daughter was going to attend the University of Hawai’i and he was coming to Honolulu to drop her off at college. My books did not enjoy anywhere near the success that his book had and we talked about that. He suggested that I write a book that emphasized the basics of lighting, more of an introductory book than I had written in the past. Portrait Lighting for Digital Photographers: The Basics and Beyond was published by Amherst Media in 2009. Thanks Chris!

Things were changing at ProPhotoResource.com. Cris was looking to establish an ebook publishing house and created www.prophotopublishing.com. Chris Grey and I were the two longest standing authors at PPR, so Cris asked us to help with the launch. Chris came up with a few volumes and my Swimwear Photography: Lighting, Composition and Post-production, On the Set and Behind the Scenes, The Making of a Maritime Fashion Shoot, and Professional Make-Over Techniques were published between 2009 and 2011. By now another leading photographer and author had joined the PPR family for a little while. Kirk Tuck had taken the photography book world by storm with his two Minimalist books also published by Amherst Media.

Kirk and I were talking via the PPR Flikr forum about commercial photography in general and about books and teaching in particular. I mentioned sardonically that the only profitable work I was getting was teaching the occasional seminar. Kirk’s reply was again one of those off-hand comments that would have a profound effect. He essentially said “Don’t knock it, there are a huge number of new photographers who could benefit from what you have to offer. I think you have a real viable opportunity in front of you, especially in Hawai’i.” I took Kirk’s words to heart and began reviewing the information that I had about previous seminars that I had taught. The idea of starting a brand new school was daunting, but one thing that I had learned from all those years of writing was to start with what you already had rather from scratch. What I had to do was go back and edit and organize what I knew I could do and then think about what else I needed. Hawai’i School of Photography launched in June of 2010! The school is the only one of its kind in Hawai’i and offers classes and workshops to the general public from novice photographers to professional shooters. It’s been a lot of work, but I really enjoy teaching the topic that has enthralled me for over forty years.

It was long before the launch of Hawai’i School of Photography when I was managing to squeak by working for the DOE, the new job at Argosy and whatever royalties came in from the first book. I entertained the idea of buying a place rather than renting but never thought it was possible. That changed in the summer of 2005. I received an email from the property manager who was overseeing my condo saying that the owner wanted to sell, so my choices were to either move or buy the unit. I ran the numbers and there was no way that I could see affording the unit–the rent would double as a mortgage. I went to the bank to see what they said and to my shock they approved the mortgage. I was going to buy my little piece of O’ahu, but I still wasn’t sure how I was going to pay for it on a monthly basis. I figured I’d be about $800.00 short each month when all of my bills were added together. My parents floated me enough to keep me going for about a year at that negative rate. I’m still not sure how I did it, but somehow I completely turned things around over the next two years. My first course of action was to get aggressive with my credit card debt. I didn’t regret racking up that $40,000.00 nut because as I said earlier, I was financing my business and that “first big break” would take care of the debt. Well, that break never materialized and now I was stuck. I decided to pick one card at time and attack it with every spare dime I had. I would pay the bare minimum on every thing else–starting with the mortgage and go from there. Every royalty check (the royalties were OK, but not huge) from the now second and third book as well as any extra income that came my way went to the credit cards. I cut the debt in half within two years. The housing market was still climbing then and I got lucky. I applied for a home equity loan just before the bubble burst. I had exactly the amount that I owed in equity. I took that and paid off the last credit card bill in full. I recognize that many financial advisors recommend against doing that because the tendency is to turn around and run up more credit card debt. However, the trade off worked for me. I realize that all I did was shift the remaining debt, but I’d much rather pay myself back than the credit card companies. A credit card balance of ZERO month in and month out is a great feeling…and I own that little condo in Waikiki! Now I am aggressively attacking the mortgage and home equity. Please note that this was not meant as any kind of financial advice, rather it was just another story of significance in my life.

It may seem like my life in Hawai’i is nothing but work. There are times between the day job, teaching at night and writing that it feels that way, but I’ve had some fun too. I had a good amount of “free time” during my first year in Hawai’i and spent a lot of it with Charlie and Lee. Music has always been an important part of my life. I’ve tried to learn to play the guitar, but just didn’t have the necessary coordination to pull it off—to the ultimate dismay of my various roommates. There is a style of guitar played in Hawai’i called “Slack Key.” Slack Key is a method of playing guitar with an open tuning style that originated in Hawai’i. There is a link to Keola Beamer’s website in the “resource” chapter of this book that describes what Slack Key is and its history. Mr. Beamer is one of the true Slack Key geniuses, so it would be better for him to describe it than me. I was finally able to see Mr. Beamer play in concert with Raiatea Helm, another one of my favorite Hawaiian musicians. There is a funny story about the first time I saw Ms. Helm perform. There was a monthly series of free concerts at the Embassy Suites Beachwalk Hotel. Raiatea was scheduled to perform and I had heard of her, but didn’t know much about her music. I was curious and arrived early to get a good seat. The crowd filled up around me. Raiatea came on stage and her voice blew me away. Now, I don’t want this to come out wrong, but she is a somewhat petite lady. Her physical size simply did not match her voice. I leaned over to the elderly lady sitting next to me and asked: “Where is that voice coming from?” She pointed to the corner of the stage and said: “There’s a speaker right there!” I had no response! Raiatea and Keola went to record one of my favorite albums of all time together and I had the pleasure of sitting in the front row for one of their concerts. I won’t ever forget it.

My “cousin” Charlie is a musician. He plays clarinet. Charlie, Lee and I would go to see an amazing musician named Ledward Kaapana. Ledward is one of the best string instrumentalists in the world. I say “string instrumentalist” because he is a master on the guitar–acoustic, slack key or electric, ukulele, banjo, you name it. Led always invited musicians from the crowd to play with him and Charlie would often sit in. One day it was  Ledward on lead guitar, his bandmates on rhythm and bass, another friend playing ukulele and harmonica and Charlie playing clarinet. A lady walked on stage halfway through the song and Ledward handed her his guitar. Now he was wandering around on stage with nothing to play until he found a banjo: Two guitars, one bass, one ukulele, one harmonica, one banjo and one clarinet! It sounded great!

Ledward played at place called Kapono’s at the Aloha Tower Marketplace. The bar/restaurant was owned by Henry Kapono, half of an extremely popular duo named Cecilio and Kapono, or just C&K. C&K were not as active as they were in their heyday, but Henry would play his club on Wednesdays and Duke’s on Sundays. I would see him play occasionally. C&K was scheduled to play a big reunion concert at Kapono’s and I got tickets for myself and a friend. They were playing on Friday and Saturday and we were going to the Saturday show. The concert was “general admission” and would be a sold out crowd. I was concerned about the rush at the front door as well as not getting a seat at all. I went to see Henry the Wednesday before the big show and went up to the stage between sets to tell him my predicament. He had his stage manager find me later that night to arrange for my safe entrance to the C&K show through a side entrance. I was seated safely. My friend found me, and the show was phenomenal. I had only lived in Hawai’i for about two years then but I already knew and was singing along with most of the songs. Henry and Cecilio were going to go off to sign autographs when the show ended.  I managed to get to the fence that separated front and backstage just as he was walking past. I called to him so I could thank him. I am sure that this was a very emotional moment for him; he had just finished two very successful shows at his own place. Even so, Henry came over and before I could start to say what was on my mind, HE asked ME: “So how did my guys do for you? Did they get you seated OK?” That is Henry Kapono: Pure class all the way. I had been a fan of Henry the musician before that day. I became a fan of Henry the person from that day on.

I mentioned that my friend Max owned his own SCUBA company. He made good on his promise to get me underwater. I’ve been on eleven dives so far. The one thing that we haven’t accomplished yet is to finish my certification course. That’ll happen one day. There is a funny story about my first dive: Max and I showed up at the Fish and Dive boat for two shallow dives. You can dive down to about 35 feet without being certified. I come hobbling down the ramp and the Captain and the crew are shooting Max the stink eye as if to ask: “What are you thinking?” The current was really rough that day although I didn’t know the difference. Max assured the Captain that he had my back. I had done a “pool session” prior to jumping off of a boat in the middle of the ocean so I sort of knew the deal, besides, Max was right next to me at all times. I’m not sure which dive it was that he let the leash go a little but I remember thinking that I must be doing ok because he wasn’t hanging on! The dive was a big success albeit short. The “bottom time” was cut short because it turns out that I was an “ASD” or “Air Sucking Dog!” We returned to the boat to high fives and cheers, not to mention a relieved Captain. I was the boat hero that day–until the boat was docked and tied up. That’s when I pulled a face plant fall to the deck! I looked up from my knees and said “What, no judges scores?” We had a good laugh and I was always welcome on that boat. I had proved myself.

The world underwater is a pretty amazing place. Hawai’i is known for its giant Sea Turtles. They are gentle giants that sadly are on the protected species list because their numbers are dwindling. It is against the law to touch them. One dive was pretty special; one of these huge creatures came up right beside me and was so close that I had to consciously avoid touching it. The turtle just swam very contently next to me for several yards before swimming off. Max captured of photo of the turtle and I looking at each other seemingly saying: “What the heck are you!” Not all of the sea’s creatures are benign, but even the scary one’s don’t often attack unprovoked. I’ve seen some white tip sharks, but nothing bigger than that yet. Moray eels aren’t the most pleasant looking creatures and I did see one of those up close. It was burrowed among some rocks as they normally do and took offense to being disturbed by our small group of divers. The eel came out of its hole and took off–right between my legs! It wasn’t on the attack; it just wanted to get out of there. There are underwater signs for the different creatures and there is one for “eel.” I invented a new sign on the spot though, something resembling a one-finger salute! My favorite dive to date though was a beach dive at a place called “Shark’s Cove” on O’ahu’s North Shore. There aren’t any sharks there,; that’s just the name. Shark’s Cove is made up of a series of underwater lava tubes and caves that were just fascinating. I was not brave enough to venture into the caves, but it was great to see these structures and get a sense of where our above water landmasses come from.

I realize when I look back over my life that I am a bit of a nomad. I had and have no intention of moving away from Hawai’i, but I began to feel the itch to explore growing inside me again. Hawaiiana continues to fascinate me, but truth be told, it is the whole Polynesian and South Sea culture that intrigues me. I’ve spent a good deal of time in the Iolani Palace and Bishop Museum on O’ahu, the Kaua’i Museum, and Hulihe’e Palace in Kona on the Big Island, but I wanted to learn more about where the Hawaiians came from and the broader cultural influences that helped form my home. The Polynesian Cultural Center in Laie, O’ahu does a great job of offering short glimpses of Tonga, New Zealand (Aotearoa), Samoa, Tahiti, Marquesas, Fiji and of course Hawai’i. However I wanted to start exploring the real deals, so with a little more financial freedom I booked a nine-day trip to Fiji in June of 2009. Once again I faced those inevitable “Are you traveling alone” questions but off I went.

Fiji was wonderful. I have a full chronicle of my experiences at www.dantzigphototalk.com in the June 2009 folder that also shows many of the images I captured if you are interested. I wanted to do the “tourist” stuff, but I also booked some private tours so I could learn about Fiji. I include some of my thoughts here to give you a flavor of the trip:

6/15/09 I requested a 6:00AM wake-up call—this is great—there was a knock on my door at 6:00! They literally come and wake you up! The people at this out of the way resort are amazing. I was waiting for my pick up for a day cruise to what turned out to be a very small but gorgeous island when I began having second thoughts about leaving my passport and wallet in my room unattended. One of the hotel employees came to the rescue again! He went back to my room and retrieved my documents while I waited for the pickup. My passport was safely locked away as I piled into the front seat of the small bus with our tour guide driving. I was still freaked about driving on the left. I snapped photos out the window of all the stores, etc. to get a feel for this side of this island. The feel was instantly different when we crossed a small “river” to Demarau. We were in “resort” territory. I think I like the Nadi side better.

The second snorkel trip was after lunch. Lee wasn’t sure about me but had the respect to ask if I could do it. I wound up holding on to him as we swam back to shore from the entry point. He was clearly impressed with me even though I drank half of the South Pacific Ocean and almost fed the fish! I prefer scuba diving—I can’t tuck my head too low and inhale the Ocean with a regulator in my mouth. Lee kept commenting to his friends: “This guy’s good!” He confessed with obvious respect that he had never been scuba diving. He was impressed with my 11 dives. I hate to admit this, but sometimes I still get a kick out of surprising people.

6/17/09 Fiji Today was the “Whales Tale” cruise to yet another small island. One of my “bus mates” (to the boat) was a beautiful Chinese lady named Athena… I came to (after a midday nap in a hammock) in time to watch the volleyball match that had just begun. It was getting close to leaving time and the volleyball was the last scheduled activity. I went back to the lunch area as the second and the final match was in progress. Athena was lying alone on a bench closer to the water so I went over and told her that I had a question for her. I told her that I was a professional photographer from Hawai’i and asked if she’d like to take some photos on the boat on the way back. I was very pleasantly surprised when she responded very enthusiastically to my offer.

6/19/09 My guide for the day was a very personable local gentleman who was easy to talk to and laugh with. I couldn’t tell you where we went, but it was a lot of back (aka DIRT) roads through the countryside. Horses, goats, cows and bulls randomly dot the roadside—some tied up, some apparently not. The weather was still junk, but it did not rain much so it was OK—just lousy for pictures, so I didn’t take many. Fiji is very much like Hawai’i. I haven’t seen the large mountains, but the lower areas strongly resemble the lower grassy hills of Hawai’i. We went through some areas that seemed like the transition from the East to North sides of Kaua’i—thick trees and lots of bamboo. We passed several Fiji villages, each with a larger bure home for the chief and many smaller homes made from cinder or tin. The largest building in each village is the village church. Fiji is primarily made up of Native Fijians (who are believed to have come from Tanzania, not Asia and are considered Melanesian rather than Polynesian), Hindu Indians and Muslims. Muslim homes are painted blue and Hindu homes have a large pole with a red “flag” hanging. Tourism is the number one industry in Fiji with sugar cane following in second place.

6/20/09 I was set for a private tour today. Peli had secured a cab driven by a gentleman named Jeb for our transport. The first stop was the bank so I could change more money (and pay Peli!) and then we were off in the opposite direction than yesterday’s trip. We headed to Lautoka, the heart of Fiji’s sugar trade and the second largest city in the country; 40,000 people live in Lautoka. The conversation was easy and interesting as we compared the folklore of Hawai’i and Fiji. I can definitely see where some of the old Hawaiian stories came from. There were similarities between the worship of different gods and tabus on removing certain things from the different areas. Fijian gods, like Hawaiian gods, took the shape of different animals and other beings. Each tribe had its own god and that animal was sacred. The turtle, or fonu (as opposed to “honu” in Hawaiian) is similarly revered as a token of good luck. The whale is sacred, but the teeth from beached whales were used as dowries in exchange for a bride.

6/21/09 Last day. The skies were changeable all day–sunny, cloudy then sunny again, but no rain. I ended the trip the same way it started–sitting by the beach reading about the Eagles…It was a very pleasant way to end a good week. I have a feeling that this trip will get even better in my memory as time passes. The tourist stuff was fun–and beautiful–and photographing Athena was a really pleasant bonus. I enjoyed the two “personal tours” because they were off the beaten track. I found the similarities between Fiji and Hawai’i to be very interesting–but it makes sense because the original Hawaiians supposedly came from the other South Sea Islands. Ancient Hawaiian’s culture was probably a blend of the various places that they came from. I enjoyed comparing the folklore and talking about the pre-Christian religions.

6/21/09 Home: Perhaps one of the most important things that I got from this trip was a new perspective and appreciation for my home. The mention of “Hawai’i” holds the same mystique there as it does on the Mainland here in the States. I think I am beginning to have a better understanding of where Hawai’i came from. I am still interested in exploring more of the Islands of Polynesia, but I can enjoy the beautiful tropics in my own back yard. I learned that while I, along with many many people, struggle to make ends meet, I’m actually doing very well. We forget that in our day-to-day lives. We are often so caught up in paying the next bill that we forget to sit back and truly enjoy what we are working to pay for. Yes, I’ll have to get back on my crazy treadmill to pay for the honor of calling Hawai’i home, but thanks to Fiji, perhaps I’ll take more time to enjoy it.

–END

I would be remiss if I did not mention surfing. Surfing is such a huge part of the culture in Hawai’i. Surfing, of course, requires a great deal of balance, something that I sorely lack. I truly thought that this would be something that I would only enjoy from afar. I had tried boogie boards with limited success and the big boards seemed overwhelming. Besides, I have learned to respect the ocean and her waves. In fact, one wave at Sandy Beach on the East Shore of O’ahu ate one of my canes one day. So now I have one cane lost on the top of Hunter Mountain in New York and one surfing the bottom of the ocean in Hawai’i! Lee’s son Pat is an avid surfer and would have none of the notion that I would watch the surf from the shore. He and his friend Tom conspired to get me on a board. Tom had actually owned a surf school at one time. He and Pat taught me the basics of paddling out in a quiet cove in Kaaawa on the Northeast corner of O’ahu. Parts of Jurassic Park were filmed in the Kaaawa Valley so you can imagine the incredible beauty of the place. I’ll tell you what; the beauty of that valley on land is nothing like how it looks from a surfboard in the ocean! The Ko’olau Mountains TOWER from that perspective. That view alone was worth lying on that surfboard, but Pat and Tom weren’t finished with me. They wanted me to catch some waves. Tom paddled out with me while Pat stayed closer to shore to play lifeguard if needed. One of the biggest factors that I learned that first day was where to position myself on the board. I wasn’t going to stand up on the board so it was a matter of figuring out where to lie. Tom would push me into the wave at the right time; we’d deal with me catching my own waves on a different day.

Well, the first wave experience was less than auspicious. I quickly learned and experienced the surfing term “Pearl Diving!” For those who don’t know, a Pearl Dive is when you are too far forward on the board and the wave catches the back of the board and flips you over. One minute you are on the top of the world and the next minute you are digging among the oysters looking for pearls! I was officially initiated into the “club” with that dive: I was a surfer! Oh yes, surfboards are often made of foam covered with layers of fiberglass that can create a nasty rash under your arms when you paddle out for a wave. I also learned the need for a good rash guard! Ouch! I wore long sleeve shirts to avoid the rash on future outings.

We didn’t stay out too long, but the next wave or two were more successful. We went out again a year or so later and Tom said that I had maintained the skills that I learned last time and we started working on how to steer the board while “in flight.” We haven’t been able to get out again yet, but I did surf one time with a great group called AccesSurf. AccesSurf is a volunteer group that takes people of all ages and disabilities out for rides in the surf for free once a month. The volunteer instructors ride tandem, so you are not alone. It was a great experience, but I want to learn more from my friends to be more independent in the water (there I go again)! The board that I was on with AccesSurf was a rescue board with handles that gave Tom some ideas about how to modify a board for me to accentuate my ability to steer the board on my own. Stay tuned! There’s more to come with this adventure!

Hawai’i is unique in so many ways and the take on local sports here is no different. We don’t have any professional sports teams here so the high school and especially the University of Hawai’i athletics are huge. Football is obviously a monster and people bleed Warrior Green here. I expected that, but what I didn’t expect was that the number two spectator sport in Hawai’i is UH Women’s Volleyball! I was first introduced to the game when it would be on television at the local pubs and people would be cheering loudly, so I started to watch with some curiosity. Curiosity gave way to genuine interest, especially since two of the ladies in my office were big “Wahine Volleyball” fans. They’d sit around at lunch and talk about the game the night before. Even my chiropractor/friend was interested in the game. I finally got tickets to the last game of the season in 2004. The arena was at least half full; meaning over 5,000 fans were in attendance! I was floored! It was great fun and I watched the Wahine lose a Final Four match in the NCAA Tournament from my living room in New York while l was home for Christmas. I was talking to my buddy early the next season and his sister got us tickets for a weekend tournament. We went and I bought season tickets the next day and have had season tickets every year since then. The two NCAA Regional Playoffs matches against the University of Southern California in the past two years were among the most exciting events that I have ever witnessed. They were both played at the Stan Sheriff Center and went to five sets both times. The teams split the two matches with UH winning in 2006 and USC taking it in 2011.

I started to photograph some of the games just for fun. Team photographs are passed out on Senior Night, the last home match of the season, and the players hang around after the game to sign autographs. I began to give the players images of the games I photographed. Some of the players actually ask me if I’ll have photos for them now. It’s a fun way to say: “thanks for a great year.” I’ve also gone on to work with some former players in more serious shoots One former player, Rayna, models for my outdoor lighting class and another went on to become Miss Hawai’i. Raeceen Woolford used one of my images of her for a fundraiser for her Miss America run. She was one of the finalists. There is a very funny story that involves Rayna. I had met her at a couple of previous Senior Nights and saw her in the stands during a Spring exhibition match the following year. I went up to her and said hello and talked to her about doing some modeling. She was very polite, but it would be a while before we got together for a shoot. We chatted back and forth on Facebook until we bumped into each other again at an event called the Great Aloha Run Expo. The Run is one of the biggest charity events every year and the expo is a huge tradeshow where runners register. The biggest fundraiser of the year for United Cerebral Palsy of Hawai’i is our Great Hawaiian Rubber Duckie Race. We set up a booth and sell “duck adoptions” all weekend. I cannot participate in all of our fundraisers during the year, but I go all out for the Duckie Race. I was walking towards our table and I hear: “Steve?” I look up and it’s Rayna giving me a rather unusual look…because I was wearing a DUCK hat! It made sense at the booth, but not so much among the other exhibitors! Rayna was such a good sport that she shot with us anyway…and we still laugh at the stupid duck hat! That’s OK, that was 4 years ago and that silly hat and I have raised over $8,000.00 for the organization (Mahalos to all my friends and family–especially one super cousin–for the amazing support!) Of course, now I HAVE to wear that hat every year!

 Rest In Peace, Dad

Two thousand five was a tough year for my family. We lost my father and best friend to liver cancer. He frequently needed blood transfusions and one of them was tainted with hepatitis. The hepatitis attacked his liver and took him. I believe that the medical team at Memorial Sloan Kettering Hospital in New York City kept him alive for two years longer than he may have had, but he eventually lost the fight. He was a gentle and thoughtful man and his and my mom’s unwavering support got me through many a rough storm. He was always trying to offer guidance. One morning I was going to work and I was on some unknown side street for some reason. I was on the phone with my father and I said: “Pop, I’m lost in Honolulu.” Ever the philosopher, he replied: “That’s okay, son, you’ll figure out what to do.” I said: “No, I mean I’m lost! I can’t find the entrance to the freeway!”

My dad was very sick in March of 2005 but he and my mom had planned on visiting me that year for the first time. He asked his doctor if he should go and his doctor said: “Absolutely, go to Hawai’i!” My mom and dad came out for two weeks and I way over booked the trip. He was a trooper though as we toured O’ahu, Kaua’i (what did you expect?!) and Maui. Sanna was working at Kimo’s again and got to meet my folks. In retrospect it was great that they came because I would spend only a short time with him during my Christmas trip to New York before he passed.

I truly believe that my dad waited for me to get home to pass. I got home for my two-week stay, but really didn’t know how long I would be staying. I drove my parents to his doctor’s office early in my stay. I asked the doctor for a few minutes alone before leaving. We stopped at my parents’ family physician so mom could pickup a prescription. My father asked me what I had asked his doctor when my mom was out of the car. I said that I asked him if I should stay in New York or go back to Hawai’i after New Years. My dad then asked what the reply was. Here was a man who had raised me to be the person I was through thick and thin asking me how much time the doctor thought he had. I looked at him and said: “He said to stay in New York.”

My dad made it through Christmas. He got to see his family through a series of short private meetings in his bedroom. I went to Kenny’s house for Christmas night and got home while he was still alive. I was talking to my mom in the bathroom portion of their bedroom suite. The last thing my father said to me was “Go back to bed!” My mom came to my room at about 1:00 in the morning and said “Stephen, I think Daddy’s gone!” I jumped out of bed and went back to her bed and found that yes, my father had passed away. He did it on his terms though–in his own bed next to his best friend of almost sixty years. I truly believe that this was the greatest of all of the gifts that he gave me: he waited for me to get home so I could say goodbye and be there for my mom when she would need me the most. There isn’t a day that goes by that I don’t miss him. I could write a whole volume just about my dad, but if you think about it, I just did.

Chapter Six: Epilogue

So there you have it; that’s been my life so far. It hasn’t always been easy, but it was never supposed to be easy. I do find that I am facing certain realities that are increasingly unpleasant as I get older. I’ve done some research on the aging process in adults with cerebral palsy and no one has any definitive answers. I think that I am of a generation under study to provide suggestions for future generations. I know that my physical skills are changing although cerebral palsy is not supposed to be degenerative. I simply cannot get around the way I used to. I mentioned at the start of this book that I used to function quite well with one cane, but now I really do need to use two canes and I still hit the ground from time to time. I got a walker with wheels a couple of years ago that I alternate with the two canes. Perhaps the most debilitating “new” development has been the appearance of muscle spasms in my back. By now you know that I am no stranger to significant amounts of pain, but I was always able to do something about it. I never shied away from the most extreme remedies, like surgery, if it would fix the problem. This “new” pain–and there are times when it is hard to walk or stand–is related to the same lesion in my brain that caused my spasticity. There is no “fix” beyond perhaps anti-inflammatory medications and continued acupuncture treatments. Muscle relaxants are not any good because of my hypersensitivity to certain medications and I am personally not a fan of the Botox route. Is this new development going to stop me? Heck no, but I am really annoyed with it.

Another reality that used to bother me a lot has been my lack of success with romance. I’ve had a few flings with some being much more meaningful and passionate than others, but nothing sustained. Don Henley summed it up best with his line: “You catch a faint glimpse of love sometimes, but it never blooms.” I’ve been badly hurt on three occasions and I described one in this book. The other two will have to wait until volume two! I have reached the point where that really doesn’t matter so much anymore, although I certainly haven’t closed the door to the possibility of finding the right lady. We’ll see.

There are a few things that I have learned in my now fifty years on this Earth. Some of them are positive and some are fodder for the think tank. The first lesson is that life on Earth is not sacred. People die. Children die. We wouldn’t die if life were sacred. It is what we do with the time we have on this Earth that is important. We are in control over how we live and how we choose to deal with successes and struggles. We all can find a reason to stay in bed and cry. I tried it once and got bored by 8:00 AM! Get up and live. Don’t miss your bus.

A related lesson learned is that actual tough times and hardships are WAAAY easier to deal with than the nonsense that we can create in our heads. Give me a Kienbock’s surgery and I can and will deal with it, but keep those demons of mine locked up in that closet down the hall. Unfortunately those closets never stay locked forever, so unconditional self-acceptance means accepting those personal Poltergeists too when they come knocking. Sadly this is much easier said than done. Stop wasting time but allow yourself to be human.

A lot of what has happened in my life seems on the surface to have just fallen into place. My writing career that led to my school is one example. The dictionary defines “serendipity” as “the occurrence and development of events by chance in a happy or beneficial way.” My simpler definition is “being in the right place at the right time.” However, the lesson learned here is that serendipity without action is just a chance occurrence without any outcome or change. My good friend and SCUBA buddy Max’ favorite quote is “Luck is when preparation meets opportunity” (Seneca, 5 B.C.- 65 A.D.). Yes, it was fortuitous that I went back into that trade show to meet the crew from Photoflex, but all the events that followed were because I took action at the right time. A similar lesson learned is to take the riskier option whenever you are faced with indecision. The risks are greater, so are the payoffs. Don’t fear success.

The final lesson is one that took me a long time to learn; life is hard for all of us. Not only is it okay to offer someone assistance, but it is actually beneficial to accept and even ask someone else for help.

Final Thoughts

I was driving to the North Shore of O’ahu for a shoot with Stan one afternoon. My buddy Marshall was in the car with me and was going to help out with the shoot. Marshall has been helping me on photo shoots for over 7 years. We always have a great time and laugh out loud most of the day. Out of the blue he turns to me and asks me what I thought was my greatest accomplishment. I said: “Can you give me five minutes to think about it?” He said: “Sure” followed five minutes later with “so…?” I said that I had lived in New York, New Jersey, California and now Hawai’i and have friends, true friends—the kind of friends where we would do anything for each other no matter what in each of those places. I told him that my greatest accomplishment has been my ability to make friends wherever I go. It isn’t about the degrees earned, or the books written, or the awards won. It’s about living life everyday and building relationships, regardless of any disability you may have.

I have one last story to share and it involves Marshall. We were shooting with a model in a jungle trail in the Manoa Valley. We were at a big wooden bridge not too far from where the path started, meaning that we weren’t too far from the cars! There were four of us that day: me, carrying, well, me; Marshall and Glenn carrying the gear (studio strobe, monster tripod, batteries, light stand, camera bag, etc.); and Marie carrying her wardrobe and make-up. We wanted to get some water shots and were looking for a way down to the stream when Marshall said that there was a small pool and waterfall up the path. I said: “How far?” He said: “About fifteen minutes.” I looked him in the eyes and asked: “My fifteen minutes or your fifteen minutes?” He said: “Yours.” I said: “Let’s go for it!” By now it was about 1:30 in the afternoon or later, and, oh, have I mentioned that Marshall had recently broken his collarbone?

We started up this “fifteen minute” hike and the trail started to get a bit narrower as the concrete gave way to dirt and mud. The pitch of the hill began to incline a little, and then a lot. Marshall would bring the gear up the path a little way and the come back to help me while Marie and Glenn brought up the rear guard. The bamboo trees got thicker as the trail continued to narrow. There was a wall of dirt and tree roots to the right and an abyss to the left! Marshall kept insisting that the pool was just around the bend. We were then faced with a large stone staircase that would take us higher and deeper into the jungle. We finally reached the pool TWO HOURS later. I didn’t care about any risks of leptospirosis; I think I drank half of that stream!

We set up and started shooting, but it was now getting late. I wanted to keep shooting but Marshall and Glenn were the clock keepers. It was now close to 4:00 and we had a 2-hour hike back out! I snapped about 30 shots and we were out of there. We managed to get out before darkness took over the jungle. The photos turned out great and it was an experience that I will always cherish; I hiked the interior of O’ahu and sort of made up for the missed hike on Kaua’i.

I would like to leave you with a quote from my favorite Jimmy Buffett song (no, not that one!) He Went to Paris tells a story of a man looking back on a life filled with love as well as the devastation of war. The song ends with his character commenting on his life with these thoughts:

“…Some of it’s magic, some of it’s tragic

But I’ve had a good life all the way”

Aloha!

PART TWO: Personal and Professional Thoughts on Cerebral Palsy and Related Issues

APPENDIX A: What is Cerebral Palsy?

This was written in an interview format because it represents the hundreds of conversations that I have had with parents over the course of my career and life. Some components have been modified or moved within this book to better illustrate my stories. NOTE: I am NOT a physician and this does not constitute medical advice–merely the fruits of my experiences and research.

“My doctor says my daughter has something called cerebral palsy. What does that mean?”

Well, it could mean a lot of different things. Cerebral palsy is one of the most common groups of disabling conditions known. Cerebral palsy is a phrase that includes many types of motor or physical disabilities. It is usually caused by damage to the young brain, although symptoms of cerebral palsy can appear after an injury to an older brain. Sometimes the damage is caused by a lack of oxygen (or anoxia) at birth. Sometimes something happens while the fetus is developing and other times the injury can occur after birth. 

“Could I have done something to prevent this from happening?”

In MOST cases, the answer to this question is “NO.” YOU did not cause your child to have cerebral palsy.  When I was doing my research for my doctoral paper, I read that in 1965, 1 in every 150 live births involved some form of cerebral palsy. The estimates that I have recently seen on the Internet now range from 1 to 4 per 1000 births. Researchers are trying to find ways to prevent cerebral palsy, but the number of children born with cerebral palsy has remained fairly constant. 

“So, why does my son have trouble walking and holding things?”

In order to understand what happens to the muscles in a person with cerebral palsy, it is helpful to understand how muscles work in a person without cerebral palsy. We are constantly sending messages from our brain to do things. Every voluntary move we make is the result of a complicated loop of messages that are sent from our brain, through our spinal cord to our muscles and back. Every action we make needs a “GO!” message from the brain. Our arm needs to hear “GO!” in order to reach for a cup of coffee and bring it to our mouths. That part seems obvious. What a lot of us forget is that picking up a cup of coffee also involves a series of “STOP!” messages. Every muscle in the body has a partner to work with. For example, the big thick muscle in the front of your upper leg is called a “quadricep.” Its partner is the big set of muscles in back of your upper leg called your hamstring. Similarly, your upper arms are made of the biceps [front of the arm] and its partner, the triceps [back of the arm]. These partners work together to help maintain smooth movements.

Let’s return to the example of picking up a cup of coffee. In order for you to reach out and grab the cup, your brain sends a “GO!” message to your triceps. The triceps stretch and your arm extends. However, your biceps need a “STOP!” message so they can relax and let the triceps do their job. Now, the opposite happens when you want to bring the coffee to your mouth. Now you want your biceps to get a “GO!” message in order to flex and bend the arm towards your mouth, but in order to do this smoothly, your triceps need to get the “STOP!” message and relax. This process is amazingly simple in most people’s bodies.

The effects of cerebral palsy are caused by damage to the messenger sending the “STOP!” message. So, to continue the coffee example, when I go to pick up a cup of coffee, BOTH muscles get a “GO!” message and instead of working together as partners, they compete with each other. I am able to do this, but it sure isn’t a smooth motion!

“Will my daughter’s condition get worse?”

Well, the answer to this question is yes and no. Cerebral palsy is not a degenerative situation. Whatever damage was done by the original insult won’t get worse by itself. Unfortunately, it won’t get significantly better either [at least not yet]. There will be times when the effects of cerebral palsy will appear to be worse. I’ll use myself as an example. Remember that the difficulty moving is caused by damage to the “STOP!” messenger. My body seems to “get used” to a certain level of movements and the numerous muscle groups work OK together [never smoothly, but “OK”]. However, when I find myself in some kind of crisis state where I am asking my muscles to move FAST, then I am in trouble. I have just sent an urgent message for my muscles to “GO!” NOW! I have, at the exact same time sent an urgent “STOP!” message to the other muscles involved. Unfortunately, the “STOP!” messenger is not available, and ALL my muscles receive that urgent message to “GO!” Instead of being able to run across the street when I realize that that car is coming just a little faster than I anticipated, my body goes into “shut down” mode. The opposing muscles groups are both trying to “GO!” at the same time. People with spastic muscles tend to startle more intensely because of the sudden “GO!” messages. 

I wrote the above paragraph over ten years ago. I’ve learned a lot with my “n of 1” personal study since then. (Note: n is a symbol that indicates how many subjects were used in a research project. My life is an on-going research project with only one subject; hence the n of 1). While my overall condition has remained stable, I have noticed that it is harder to get around than it has been in the past. I have gone from one cane to always using two. Two years ago I bought a walker and now use that about fifty per cent of the time.

“Is Cerebral Palsy painful?”

Cerebral palsy is usually not painful. However, in some forms of cerebral palsy, muscles can receive sudden and unexpected “GO!” messages that result in painful spasms. Spasticity is generally not painful, although people with severe cerebral palsy need help with positioning to avoid what are commonly called “bed sores” or sores on the skin from staying in one position too long. Falls, due to a lack of coordination can result in cuts and bruises and can lead to long-term damage to knees and elbows [I know all about THAT!]. I’ve also developed a lower back spasm over the past ten years and can state with certainty that yes, they hurt. Sometimes they hurt a lot.

“I’ve heard different terms to describe cerebral palsy. What do they mean?”

Some of the terms you have heard refer to the type of motor difficulties experienced. Other terms talk about what parts of the body are affected. Unfortunately, some of these words have taken on a negative meaning. There isn’t any need to be insulted by these words because they describe what is happening to the body.

Perhaps the most common type of cerebral palsy is the Spastic variety. The process described above often results in muscles whose tone is called hypertonic. This is simply another way of saying “tight muscles.” Once again, remember that to some degree, some muscles are always getting a “GO!” message and are therefore always contracting. When the two partners are always fighting, the stronger muscle will eventually win and create visible physical distortions in how the muscles look. My right arm tends to curl up because my right biceps is stronger than the triceps. Sometimes the “growth spurt” we experience as we enter the teenage years can lead to an increase in spasticity because as the muscles are grow, so does the battle between the partners.

Athetosis and Athetoid Cerebral Palsy are terms that describe people who experience constant involuntary movements of the outer extremities. In severe cases, voluntary movements are almost impossible. 

Ataxia is somewhat more rare, and its characteristics include poor muscle coordination.  Lack of balance is common in ataxia. Sometimes ataxia is more pronounced as the person reaches for a particular action. The lack of muscle coordination can become more obvious as the person gets closer to the desired object. 

There are other forms of cerebral palsy [including atonia, or weak and flabby muscles], and there can be mixed forms, but the three described above are most common.

There are also terms that you may have seen or heard that end in “plegia.” These terms describe what parts of the body are affected. Monoplegia means that one limb is affected. Paraplegia is usually associated with spasticity and means that only the legs are involved [although reports of paraplegia involving only the arms have been made]. Diplegia involves all four limbs with the legs showing the greatest disability. Hemiplegia affects the arm and leg on one side of the body. Triplegia involves the legs and one arm and quadriplegia involves all four limbs to varying degrees. 

“Are there other conditions that I need to be aware of?”

Yes, there are other conditions that may or may not be associated with your child’s cerebral palsy. Some children and adults with cerebral palsy have difficulty speaking because, like every other voluntary movement, speech depends on the smooth transition between “GO!” and “STOP!” messages to the involved muscles. Also, like all other movements, some people can speak without difficulty most of the time and suddenly become tongue-tied. Epileptic seizures are fairly common with people with cerebral palsy. I read on-line that up to 50% of people with cerebral palsy can have epilepsy.   

Arthritis can also be a common condition secondary to cerebral palsy. 

There may also be emotional factors involved with coping with a physical disability. All children go through a phase of development where their logic is driven by magical thinking. For example, a young child may believe that he or she controls the moon because it looks like it follows them everywhere. By the same reasoning, the young child with cerebral palsy or some other physical disability may believe that they will one day walk, run or do some other physical activity that they are unable to do. They may ask for a new arm or leg for their birthday, thinking that limbs are replaceable. Children begin to develop a sense of permanence of the world within the 7 to 11 year range. As they begin to gain a better understanding of the world, they also gain a new understanding of the permanence of their physical disabilities. It is not uncommon for a child with a physical disability to show a sense of sadness as reality sets in. Adolescence, with its overriding emphasis on body image, can also be a time of deeper sadness for youngsters with a disability. 

“My child has cerebral palsy. Does that mean he will be intellectually disability too?”

A child with cerebral palsy will not necessarily be intellectually disability. However, the percentage of people with cerebral palsy who have cognitive disabilities is greater than the percentage of people without cerebral palsy. While the levels of disability can range from mild to profound, about 1/3 of people with cerebral palsy do not show cognitive difficulties. 

“Can my daughter be expected to live a productive life?”

Absolutely! There are many more factors involved with living a full life than one’s physical skills. You will see that in my case I have done everything I can to not let my physical disability interfere with my life. I have a moderate degree of spastic right hemiplegia [probably quadriplegia with a greater affect on my right side]. I cannot tell you that it NEVER bothers me, or that I am never angry or frustrated. I’d be lying if I did. However, for the MOST part, I accept it [I did not say I liked it, I said I accept it] and do what I want anyway. 

APPENDIX B: How Do I Approach Someone with Cerebral Palsy or Other Physical Disability?

The short answer to the question of how to approach someone with a physical disability is simple: Approach him or her like you would anyone else. The same goes for people with cognitive challenges. It is very natural to be curious and to look with wonder at someone with an obvious disability. I admit that I still do too. My curiosity has taken on a somewhat different slant over the years. I’m fascinated at how people’s bodies react when the brain isn’t quite intact. I’ll be at a stoplight watching a disabled person walk or wheel or whatever across the street and marvel at how they adapt to the world. My experiences at Carman Road School were amazing. I would watch kids and young adults tie a shoelace with one hand or maneuver a wheelchair in and out of a tight spot or use their mouth to uncap a pen to write something. People adapt. It’s incredible. It’s equally amazing to me that the majority of people have full access to full mobility. I don’t say that out of jealousy, just out of awe. I am not able to run, so it fascinates me when people are able to kick it into high gear. I’m getting into a gray area here; so again please don’t interpret this as whining or “boo-hoo-ing.” It’s not. I’ve been through the “why me’s” (those are natural too). I truly don’t care anymore (well, except when I really need to use the restroom–then I’ll say: “Come on body, MOVE!”).  I have the same fascination with people like Stephen Hawking. Now there is a man who blows me away! I remember reading a Playboy Interview with him years ago (April 1990). I think he was using the augmentative communication device to talk by then. I had to read the interview three times before I knew enough to realize that I had no idea about what he was talking about. His brain fascinates me in the same way that people who run do.

So, curiosity is fine; it is how people learn. Children have no filters. They have a natural desire and need to learn. They see something that they don’t understand and they ask. Wonderful. I’ve seen too many parents who get embarrassed and try to hush their curious kids. I always tell them that it is OK and important for the kids to learn. I used to go into this long-winded explanation about Cerebral Palsy and yada yada yada. The kids’ eyes would glass over! I’m sure that it was like the teachers in the Peanuts television cartoons: “Wamp wump waa wamp pum pum!” Now I just say that my legs don’t work so well and I use the canes to help me walk. Simple, short and effective. I never say that my leg is broken. Children are very literal and sometimes break their legs. I don’t want them to think that a broken leg would necessarily cause them to have canes and walkers as an adult. I always thank a kid for asking; I believe in encouraging curiosity.

I have two great stories about children and their questioning minds. The first goes way back to my graduate school days. I was a practicum student working at a preschool. A little boy looks up at me one day and asked: “Are you an old man?” I was 23 years old, but I was a Piaget protégé. I didn’t answer, but instead asked: “Why do you ask?” He, in all confidence and seriousness replied: “Because you have a cane and old men have canes!” It was beautiful logic from a four year old. The second incident was much more recent. I was walking down the hallway in one of my schools when a first grader approached me. He and I had had the “broken leg” chat before, but he would always ask. This dialog went something like:

Boy: Is your leg still broken?

Me: No, it isn’t broken, it just doesn’t work too well.

Boy: Oh. Will it always not work?

Me: Yes, it will always not work.

Boy: Even in Heaven?

Me: (Fighting back a chuckle) Well it might work in Heaven, but not here on Earth.

Boy: (As he turns to enter his classroom) Oh. Too bad!!!

I had to turn away so he wouldn’t see me laughing.

I hope to get a little more tact from adults, but that is not always the case. Curiosity, as I have said, is generally a good thing. However, there are different ways to express that curiosity. “Excuse me, do you mind if I ask you a question about your disability?” is a perfectly acceptable way to express your desire for information. I’m not as fond of a perfect stranger coming up out of nowhere asking: “Were you in an accident?” or what’s even better is when they guess: “Do you have MS?” “Um, no, and who are you?” Approach a person with dignity whether they can walk “normally” or not.

Here is another tip: talk TO the disabled person, not to his or her companion. This one used to drive me nuts, but I am over it. My friends still get angry though. I was at Iolani Palace with a friend who used to model for me. We were “Hawaiian History” buddies before life happened and we lost touch. I didn’t know how long the tour was so we borrowed a wheelchair and Kristina pushed me through the Palace. I was thinking about a book idea related to the history of Hawai’i in the late 1800’s to present and was also doing some research. I went up to someone after the tour to ask some questions. The guy looked above me and answered to Kristina! She said: “Steve asked you, answer him not me!” People with disabilities are just that: Disabled, not invisible. The same advice goes for talking with people with cognitive disabilities. Talk to them in short simple phrases with one, maybe two steps but there is no need to talk “baby talk.”

Offering assistance to a disabled person can be tricky. Always ask before grabbing or engaging in a physical assist. I fall a lot. It happens. I can usually get up without much problem if I am left alone. Remember, my body doesn’t work they way most people’s do. It is actually more difficult for me to get up when three people are grabbing and pulling me in different directions. The other thing is not to get offended when a disabled person declines your offer of help. It is not like we don’t appreciate it. We do, but it might be a matter of logistics like I just described, or the person might be going through their own “I’ll do it myself” phase like I was when I was younger. I think that most people disabled or not, will graciously accept an offer of assistance when needed.

APPENDIX C: The Cognitive Assessment of Children with Cerebral Palsy

I was asked to join a team of school psychologists across the country to work on the standardization of a revision of a popular test of cognition in 2003. It wasn’t as prestigious as that sounds; my colleague in Los Angeles had worked on similar projects and got me involved. We all met in a midwestern city for training and materials. I was finishing my book on the Ordinal Scales and was less than fond of standardized testing (at the time), but I thought it would be a good experience. I knew that I had made a mistake almost immediately, but found a sympathetic ear in one of the researchers. He understood why I could not participate in the study and we talked about other ways that I could contribute. We agreed that I would write a chapter for the test manual on how to accurately assess children whose physical skills would not allow them to perform in “standard” ways. The following paper was the result of that discussion. It did not make it into the manual. NOTE: Some of the following has appeared in Appendix A.

The accurate assessment of a child’s cognitive skills is, in my opinion, the most important aspect of a school psychologist’s job. While educational placements and programs are based upon the work of a multidisciplinary team, the school psychologist’s findings play a critical role in the process. Even under the best circumstances, cognitive assessments are never “easy.’” There is a multitude of confounding variables that the school psychologist factors into the student’s performance. The presence of a physical disability makes the process much more difficult. We are going to look at some of the variables involved in the assessment of the cognitive abilities of children with cerebral palsy as an example of working with children with orthopedic disabilities. Some of the issues discussed are specific to cerebral palsy, but many—especially the cautions expressed—are germane to all students with physical disabilities.

The unfortunate reality is that many people with cerebral palsy also demonstrate limitations in cognition. The reported prevalence of intellectually disabilityamong people with cerebral palsy ranges from 25 to 75% depending upon the study. While the spread is extremely wide, the other side is that there are a significant number of people with cerebral palsy who do not demonstrate intellectually disability. There are also a small number of children with cerebral palsy who are incorrectly diagnosed with intellectually disability. It is of vital importance that the school psychologist correctly distinguishes whether a failed item on a test of cognitive abilities was failed because of a true lack of the concept assessed or the inability to physically respond to the task presented. The presence of a physical disability is not sufficient for a diagnosis of intellectually disability.

The accurate assessment of the cognitive skills of children with cerebral palsy requires an understanding of the nature of the disability, the concepts being assessed by the test items administered and ways to modify the administration of those test items to allow the child to respond. Understanding the nature of cerebral palsy is critical because it will help you determine the child’s response mode and will help distinguish a cognitive failure from a motor failure. Understanding the concepts assessed by a particular task is critical because you will not be able to score the response according to standardized procedures. The flexibility shown in the modifications of the administration of the items, an understanding of what is being assessed and how the child’s body will react under certain circumstances will allow you to use your assessment tool to provide an accurate estimation of your subject’s cognitive skills.

Cerebral palsy is a catch-all phrase that describes many of the physical or motor effects of damage to the brain. It is not a disease entity and is not progressive. The damage is generally caused by trauma at birth, but can result from a neonatal or post-natal insult. The physical characteristics and cognitive skills of a child with cerebral palsy will depend on the precise location and size of lesion cause by the insult. The resultant motoric damage can range from mild to profound where little or no voluntary movements are possible and cognitive skills can range from superior intellectual abilities to profound intellectually disability.

In order to understand what happens to the muscles in a person with cerebral palsy, it is helpful to understand how muscles work in a person without cerebral palsy or other physical disability. We are constantly sending messages from our brain to do things. Every voluntary move we make is the result of a complicated loop of action and inhibitory messages that are sent from our brain, through our spinal cord to our muscles and back. Each muscle in the body has an opposing partner and each muscle alternates from being the agonist in a movement and the antagonist. Effective voluntary movements require a smooth transition of information from agonist to antagonist. The agonist muscle receives an “action” command from the brain to begin moving in some desired way. The agonist muscle’s partner also receives a command, but this command inhibits action and that muscle becomes that antagonist for that motion. The reverse is true for the opposite movement.  For example, in order for you to reach out and grab a cup, your brain sends a message to your triceps to stretch and your arm extends. The triceps become the agonist for this motion. However, your biceps require a simultaneous message to inhibit movement and become the antagonist for this action so they can relax and let the triceps do their job. The opposite happens when you want to bring the cup to your mouth. Now you want your biceps become the agonist in order to flex and bend the arm towards your mouth, but in order to do this smoothly, your triceps need to receive the inhibitory message, become the antagonist and relax. This process is amazingly simple in most people’s bodies.

The effects of cerebral palsy are caused by damage to the inhibitory system of the brain. To continue the cup example, when a person with cerebral palsy reaches for a cup, BOTH muscles receive a command to become the agonist and instead of working together as agonist—antagonist partners, they compete with each other. The stronger of the two muscles will ultimately win the battle and will control the final direction of the movement. Similarly, oral speech is controlled by a set of fine muscles working in close association with each other. Many people with cerebral palsy have a great deal of difficulty speaking because of the damage to the inhibitory system governing the muscles in and around the mouth and throat.

The damage done to a child’s inhibitory system has massive implications for the assessment of his or her cognitive skills. The assessment of cognition is dependent upon the interpretation of observed behavior. Traditionally, a child is presented with a task and is asked to respond with either a physical or verbal reaction. Physical reactions are often timed and the child’s response speed is factored into his or her score and is used to at least partially determine cognitive levels. Questions about the child’s environment are asked and the child’s verbal response is often used to determine how well he or she understands a particular concept.

The effectiveness of this methodology is directly proportionate to the physical abilities of a child with cerebral palsy. The use of timed tasks with children with slow and poor muscle coordination will lead to artificially low scores for cognition. However, they can also be misleading for children with mild cerebral palsy as well. There will be times when the effects of cerebral palsy will appear to be worse. I’ll use myself as an example. Remember that the difficulty moving is caused by damage to the inhibitory system in the muscle control loop. My body seems to “get used” to a certain level of movements and the numerous muscle groups work OK together [never smoothly, but “OK”]. However, when I find myself in some kind of crisis state where I am asking my muscles to move FAST, then I am in trouble. I have just sent an urgent message for one set of my muscles to move: NOW! I have, at the exact same time sent an urgent inhibitory message to the other muscles involved. Unfortunately, the inhibitory system is not available, and ALL my muscles receive that urgent message to move. Instead of being able to run across the street when I realize that that car is coming just a little faster than I anticipated, my body goes into “shut down” mode. The opposing muscles groups are both trying to move at the same time.

The examiner needs to realize that the body of a child with cerebral palsy simply will not react the way that that child wants it to. For example, although the biceps are a smaller muscle group than the triceps, they can be the strongest of the group. Therefore the child may actually pull his or her arms closer to the torso when the desired movement is to reach out to manipulate an object. It is critical to observe the rest of the child’s body if he or she is tensing up. For example, there are many times when the child’s eyes will be pointed directly at the object that he or she cannot grasp. There will obviously be a need to break the standardized administration of test items to obtain a valid cognitive assessment of a child who is physically unable to interact with the materials.

Once again, the three keys to obtaining a valid cognitive assessment of a child with cerebral palsy are: understanding the concept assessed by the task presented; where the desired response falls on the task’s continuum; and understanding the response mode of the child. Understanding the concept being assessed will allow the examiner to modify the administration of the task without violating the conceptual integrity of the item. Knowing where the desired response falls on the item’s continuum will allow the examiner to determine the cognitive level of the response. The child who is able to respond by directly accessing the materials will be somewhat easier to assess than a child who needs to rely on an eye-gaze response system. A student who is physically unable to talk will need to be provided with augmentative ways to communicate—if they are at a cognitive level where effective communication is possible. As noted above, many children with cerebral palsy have access only to an eye-gaze to respond to questions. First determine the child’s range of motion and visual field. This will help establish where the materials will be presented. Then determine how many distinct places the child is able to direct a glance. The more places he or she is able to look towards, the less likely the scored response will be due to chance. If the child is only able to look to two distinctly different places, then follow the administration of the item with a confirmatory “yes/no” question [again, if it is determined that he or she understands the concept of yes and no]. I will present the materials one at a time and make sure the student can see it. Then, when all materials are presented, I will have the child focus his or her eyes on me as I ask the question. I will score the first place the child looks—unless it has been determined that he or she always looks in one direction before being able to move his or her head into position to look in the opposite direction. In these cases I will score the final placed looked at.

Fatigue is another factor to consider when assessing a child with cerebral palsy. Simple movements can take a great deal of effort and it is often a struggle for the student to keep his or her head in position to see the materials and respond. Keep the test sessions short and use several sessions to complete the evaluation.

APPENDIX D: Intellectually Disability—What We Can Expect at the Different Levels of Cognitive Development

Adapted from A Guide to the Theory, Administration, and Interpretation of the Southern California Ordinal Scales of Development: Cognition ©2002 Stephen A. Dantzig, Psy. D.

The viewpoints presented herein are the author’s and are not meant to attempt to supersede State law in the determination of the appropriateness of special education for a particular student.

The term “intellectually disability” can be a confusing and frightening one. Taken by itself it is quite useless because of the vast difference in skills that children at the different levels of disability demonstrate. The common way in which intellectually disability is assessed complicates the matter because the usual “intelligence tests” do not adequately distinguish among the lower levels of disability. The floor of most “IQ” tests can tell us a lot about what the student cannot do, but provides little or no information regarding what the student can do. Furthermore, it can be difficult to translate score ranges into what the student will or will not be able to do it the classroom or community.

Intellectually disability is defined most simply as a level of cognition and adaptive skills that are below the expected levels for a particular student. Intellectual disability is not a “developmental delay,” because the brain is unable to enact the necessary structural changes to allow for reasoning at a higher level. Practice and tutoring will certainly help a student “learn” more at his or her level [“horizontal development”], but won’t necessarily allow for a higher understanding of the information presented [“vertical development”]. The amount of “vertical growth” possible is based on the extent to which the brain is able to reorganize and restructure itself. I would like to propose a model for defining the various levels of intellectually disability that is based on functional skills that are exhibited at different times over the course of normal growth and development. For now, please assume that we are talking about students whose chronological age is well beyond the age ranges described above.

The first signs of intelligence in children occur within the four to eight month range of development. Prior to this phase, children react to the environment by taking data in through one sense or behavior at a time. They will follow an object visually if something of interest passes in front of them. Similarly they will react when something is placed in their hands. However, they do not reach for or explore the object because they have not begun to separate themselves from their environment [up to about 6 months].

A number of our students will never pass beyond this phase of development. Students who do not begin the process of distinguishing themselves from their environment and who continue to gain information about the world through one sense at a time remain in the profound range of intellectually disability.

Students within the range of profound intellectual disability will need the most extreme levels of support and supervision. They will never display any independent living skills [including the most basic of personal care needs]. Their “curriculum” in school needs to address their modes of receiving information about the world; namely we need to be continually introducing new objects of vastly different types that stimulate each of the active senses. Exposure to hand over hand activities that attempt to initiate the coordinate two behaviors/senses need to dominate the student’s IEP. Toileting and other self-care programs are inappropriate at this level. Transition goals for older students within this range need to examine day activity programs. Vocational programs such as sheltered workshops are well beyond the functional level of these students.

Some students who function within the profound range of disability also display self-abusive behavior. The natural tendency is to ask for or write a behavior support plan to extinguish the behavior. However, behavior plans work because of the symbolic relationship between a behavior and a consequence. Students in the profound range of disability are pre-symbolic, so the behaviors in question will not respond to behavior plans. The “behavior plan” needs to be more of a “safety” plan that details how the caregivers will protect the student from harming him or herself [including helmets and time-limited soft restraints].

The next major developmental milestone occurs when the infant begins to coordinate two or more actions to explore the environment. The idea that objects exist outside of their body emerges and the infant begins to coordinate vision and touch by reaching for an object within sight [or any other active sense]. The interaction with the world becomes much more proactive, but is still extremely tied to the physical world. The student slowly understands that the object to be explored exists even when out of sight. This critical concept is known as “Object Permanence” and allows for the beginning of symbolic reasoning [a person is able to attach a label to an object when he or she can maintain a mental picture of the thing]. The use of foresight and delayed imitation also develop within this time frame [by approximately two years of age].

There are also a number of students who will develop the ability to maintain a mental picture of an object, but never advance to the point where they can functionally use symbols. True language will not emerge for these students. School aged students who function between the ability to coordinate two actions and the development of object permanence, but who never display the ability to use symbols, are within the severely disabled range.

Students who function within the severe range of intellectual disability will also need a great deal of support and supervision. The school curriculum needs to focus on solidifying the concept of object permanence—depending upon where they are along the spectrum. Object permanence is the key for any kind of independent functioning and transition plans for students within the severe range of diability still need to emphasize day activity centers over workshop environments.

Students who are functioning towards the end of the sensori-motor period of development are beginning to establish symbolic connections within their worlds. Behavior plans that are simple and use immediate and powerful reinforcers might have some effectiveness in addressing behavioral concerns with students within the upper end of severe disability. Bathrooming programs are still not likely to be effective because of the lack of functional symbolic connections between; the feeling of fullness and the act of relieving the pressure; the understanding of the existence of this thing called a toilet; and the connection between the usefulness of the toilet and the act of relieving oneself.

The transition from the sensori-motor world to pre-operations is a huge difference in the way our students understand the world. What was once a world based on physical interaction and understanding is now opening into the realm of mental activities. An “operation” for Piaget was a “rule for thinking.” The phase of development known as pre-operations is correctly named because students at this level are making some mental decisions about the world, but they are not doing so with any logical foundation.

There are two levels to pre-operations. The first level is known as the pre-conceptual phase and describes a period of cognitive growth that involves a beginning awareness of the individual attributes that make up the things in our world. The student will be able to make simple decisions and organize the world according to single attributes like color or shape. A functional discrimination of sizes occurs towards the end of this phase of development. Language explodes during this phase because they are now able to put a name—or a symbol—to the objects that they are able mentally represent. Children at this level are now able to learn symbols—but they are not yet able to use symbols to learn. Even though there is a great increase in expressive language [not necessarily oral speech], the logic or reasoning behind their language is purely associative. They take a part of the question and interpret it based on their own personal experiences, immediate perceptions and/or magical thinking. For example, the question “What happens to the sun at night?” might result in the response “Because we get into our pajamas,” or some other nighttime personal experience.

The second level of pre-operations involves the beginning abilities to integrate and use two or more parts of a problem at the same time. For example, students begin to organize and classify the things in their world by color and shape. They are able to put one dimension on hold [i.e., color] to work on a second dimension [i.e., shape] to figure out that a white triangle is missing from a pattern. Number concepts begin to have meaning beyond rote counting, although “real” value is still determined by perception. The notion of sequencing objects by set rules develops. Thinking, while using more than one dimension, is still one-directional. Students are unable to reverse the direction of their thinking to think a problem through from both directions.

Language use continues to develop in leaps and bounds. The reasoning of the child within the second phase of pre-operational thought becomes intuitive. Things happen and go together for reasons beyond their immediate worlds, but there is no logic involved. For example, a ball might sink because it is round. The reason has nothing to do with the student, but also has no basis in logic.

The first phase of pre-operations usually develops within a range of 2 to 4 years while the second phase is characteristic of the 4 to 7 year range. The two ranges represent a vast difference in functioning. However, both ranges involve the growing use of symbolic reasoning, and neither phase utilizes logic. Therefore older students functioning in pre-operations will be within the moderately disabled range—albeit a “low moderate” and “high moderate” range.

Students within the low moderate range of disabilty continue to need a great deal of support and supervision. They are rote learners and will not generalize information from situation to situation and therefore need to be exposed to the same lessons in a variety of settings. Students at this level are pre-academic. They are working on understanding the simple pre-concepts that form the basis for academic activities. However, these skills will not develop into functional academic skills because they are unable to coordinate two or more of these preconcepts and they cannot generalize the information learned.

A student in the 2-4 year range’s curriculum needs to be based on the rote repetition of functional life skills and the expansion of one-dimensional tasks. Transition plans need to focus on pre-vocational/sheltered workshop skills. Community based training is needed, but with a good deal of supervision. Students in the lower range of moderate diability can certainly be “taught” how to “read” a street crossing sign, but they can never be taught to “read” distance, time and space to use judgment to determine whether the car coming that is coming is actually slowing to stop.

Behaviors can now be addressed through behavior plans, but they need to be extremely simple. The student’s world is dominated by perception rather than logic or quantity. Therefore star charts may be useful because the stars are pretty rather than the idea of “five” stars. There is really no functional understanding of “future,” so delayed reward programs will be less effective than those that provide immediate reinforcers. Also, many behaviors that may be annoying could be developmentally based [i.e., a prolonged version of the “terrible two’s”].

Students who function in late pre-operations are somewhat more difficult to fit into a “category” because some will “look” higher functioning than “moderate.” However, in some ways these students need more supervision than their lower functioning peers because their difficulties are often not as obvious. They can “talk” a good game and may find themselves in a heap of trouble without really understanding how they got there—and with no clue about how to get out of the situation. Their worlds are much more complex than the students in the low moderate range, but perception still overrules logic. For example, the meaning behind things change as their appearance changes.

Students at the upper range of this level might be able to functionally handle an early primary school curriculum [1^st, maybe 2^nd grade] because many skills at that level can be learned by rote. However, students at this level are still working with academic pre-concepts, even though they are integrating them much more effectively than in the pre-conceptual range. Otherwise, an appropriate curriculum would emphasize more complex pre-vocational skills and transition plans can look at upper level workshop and/or job-coach supported work environments. There is a rudimentary understanding of quantity, so simple token economy behavior plans may begin to be effective.

We begin to develop the cognitive structures and concepts that dominate our academic and functional lives somewhere around 7 years of age. The range of development that is necessary for academic success is known as “Concrete Operations.” Piaget described this range as occurring between 7 and 11 years of age. I believe that this is only partially true [with all due respect!] The concepts needed for academic success may begin within the 7-11 range, but they do not stop at 11. In fact, it is my belief that concrete operations is a never-ending process that increases in complexity as we continue to grow. The concepts that develop during concrete operations are necessary—and often sufficient for academic success and for living a fully functioning productive life. In fact, there are many people who do not fully function in Formal Operations [Piaget’s final—and most controversial stage of cognitive development—and one that I see as developing in late adolescence rather than at 11 years of age]

Concrete operations is the level at which logic begins to override perception. “What you see” is no longer necessarily “what you get.” An understanding of rule-guided sequences expands to include symbols and concepts and we begin to be able to process information along several dimensions simultaneously. Classification schemes begin to include supergroups as well as subgroups and we can engage in shifting mental sets. Thinking becomes reversible: we are able to mentally retrace the steps needed to complete a task and then to devise a plan and carry it out. “Hypotheses” become possible, but are still tied to actual manipulations of the task. The reasons for the events that occur around us begin to show some scientific validity—but are not necessarily based on “true”’ science [i.e., a ping pong ball will float because it is full of air, versus a description of it’s weight distribution in relation to its size and density].

Students in the mild range will show some early concrete operational skills, but won’t understand the same concept at a slightly higher level. Groupings are still pretty much at the subgroup categories, but there may be the occasional supergroup. However, the flexibility needed to go between the sets is not firmly established. Similarly, the ability to shift mental sets may be emerging, but on a very limited basis. Explanations for why things happen begin to show some logical basis—or they are able to use an appropriate phrase [like “heavy”], but not be able to explain the term adequately. They may not be firm in their responses, meaning that they will change the answer if questioned. They will have difficulty performing a task without seeing all the steps.

Behavior plans need to be sensitive to the fact that students in the mild range of disability don’t have a truly logical grasp of the world. Token economies can again be useful, but cannot have “nested” levels—stick to one major dimension for greater success. At some point there needs to be a decision about whether an academic program is useful or if a structured intro level vocational program is more beneficial. Transition plans may be difficult for these students because they may be able to perform “adequately” in a non-academic setting, but they would still need support with abstract adaptive skills [i.e., banking].

The above descriptions of the different levels of disability were based on an older student. How would we use this model to describe the functioning level of younger children—or students whom you would not expect to be in concrete operations? One of the critical considerations to explore is whether he or she is transitioning into a higher level of development. As a general rule, I am not overly concerned if a student is one level below his or her “expected” level and is showing emerging skills into the appropriate level. He or she may be “truly” developmentally delayed and with the proper interventions, may “catch-up.” [Note: the exception to this was described above with the older student showing emerging skills in concrete operations] I am starting to be more concerned about the student who is not showing an emergence into the appropriate level of development. If they are “stuck” one level below, I will talk about “mild” disability [depending on the age of the student], but in the back of my mind, I am thinking that if the student does not begin to show growth into the next level, then by the time he or she is reassessed, the gap will be two levels and more into the moderate range. If the skills noted happen to be in the sensori-motor phase, and the student is chronologically beyond that range, then I am starting to think in terms of severe or profound disability.

PART THREE: Resources

PLEASE NOTE THAT I AM NOT AFFILIATED WITH ANY ORGANIZATION BELOW (EXCEPT UCPAHI) AND MAY OR MAY NOT AGREE WITH THE INFORMATION PROVIDED. THESE RESOURCES ARE PROVIDED AS A STARTING POINT AND STEPHEN DANTZIG IS NOT LIABLE IN ANY WAY FOR THE CONTENT OR INFORMATION PROVIDED. BE PARTICULARLY CAUTIOUS WITH WIKIPEDIA PAGES LISTED. WEB SITES LISTED WERE VALID AND OPERATIONAL AT THE TIME THAT THIS LIST WAS COMPILED. MAHALO

If you think that your child might have Cerebral Palsy, contact your local UCP office for assistance. Contact information is provided below for the National, Hawai’i and Suffolk County offices or do a web search for an office near you.

United Cerebral Palsy–National

http://www.ucp.org/

1825 K Street NW Suite 600

Washington, DC 20006

Phone: 800.872.5827 / 202.776.0406

United Cerebral Palsy of Hawai’i

http://www.ucpahi.org/

414 Kuwili Street, Suite 105

Honolulu, Hawai’i 96817

Toll Free: 1-800-606-5654 | Phone: 808-532-6744 | Fax: 808-532-6747 | UCP Foundation (Donation Pickup): 808-254-0114

United Cerebral Palsy of Suffolk County, New York

http://www.ucp-suffolk.org/

250 Marcus Blvd.

Hauppauge, NY 111788 

Great Aloha Run

http://www.greataloharun.com/

GAR Committee

418 Kuwili St.

Suite 102  

Honolulu, HI 96817 

808. 528-7388 
809. Email: [email protected]

Nassau County Board of Cooperative Educational Services

http://www.nassauboces.org/site/default.aspx?PageID=1

George Farber Administrative Center

71 Clinton Road

PO Box 9195

Garden City, NY 11530-9195

Los Angeles County Office of Education

http://www.lacoe.edu/

9300 Imperial Highway

Downey, CA 90242 – 2890

(562) 922-6111

Special Education (General)

http://www2.ed.gov/about/offices/list/osers/osep/index.html

Office of Special Education Programs

Office of Special Education and Rehabilitative Services

U.S. Department of Education

400 Maryland Ave., S.W.

Washington, DC 20202-7100

Individuals with Disabilities Education Act History

http://www2.ed.gov/policy/speced/leg/idea/history.html 

The best thing to do if you think that your child needs special education services is to call your school and make an appointment to see the principal. Here are some other references with information regarding special education and/or other disabilities:

Intellectual Disabilities

http://www.thearc.org/

1825 K Street, NW, Suite 1200

Washington, DC 20006

800. 433-5255

http://www.aaidd.org/

501 3rd Street, NW Suite 200

Washington, D.C. 20001

Telephone: 202/387-1968 or 800/424-3688

Fax: 202/387-2193

Learning Disabilities

http://www.ncld.org/

National Center for Learning Disabilities
381 Park Avenue South, Suite 1401
New York, NY 10016
Ph: 212.545.7510
Fax: 212.545.9665
Toll-free: 888.575.737

Autism

http://www.cdc.gov/ncbddd/autism/index.html 

March of Dimes

http://www.marchofdimes.com/

Muscular Dystrophy

http://www.mda.org/

Spina Bifida

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002525/

Kienbock’s Disease

http://orthoinfo.aaos.org/topic.cfm?topic=a00017

http://www.ncbi.nlm.nih.gov/pubmed/19962953

Ann Phys Rehabil Med. 2010 Mar;53(2):118-23. Epub 2009 Dec 4

Obsessive-Compulsive Disorders

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001926/ 

Albert Ellis Institute

http://www.albertellis.org/

45 E. 65th Street

New York, NY 10065

212.535.0822

The Lazarus Institute
http://thelazarusinstitute.com/
98 Tamarack Circle
Skillman, New Jersey 08558
Tel. (609) 683-9122

American Cancer Society

http://www.cancer.org/

250 Williams Street NW

Atlanta, Georgia, 30303

Memorial Sloan-Kettering Cancer Center

1275 York Avenue

New York, NY 10065

212-639-2000 

Asthma

http://www.asthma.com/index.html

Other Resources for People with Disabilities or Health Questions:

St. Charles Hospital

http://www.stcharles.org/

200 Belle Terre Road

Port Jefferson, New York 11777-1968

Centers for Disease Control and Prevention

http://www.cdc.gov/

1600 Clifton Rd.

Atlanta, GA 30333, USA

800-CDC-INFO (800-232-4636)

Acupuncture

http://en.wikipedia.org/wiki/Acupuncture

Chiropractic

http://www.acatoday.org/

Physical Therapy

http://www.apta.org/

Occupational Therapy

http://www.aota.org/ 

American Occupational Therapy Association

4720 Montgomery Lane

PO Box 31220

Bethesda, MD 20824-1220

Phone: 301-652-2682   TDD: 800-377-8555   

Institutions of Higher Education and other Educational Resources:

Rutgers University

http://www.rutgers.edu/

732-445-info (4636)

Chaminade University Honolulu

http://www.chaminade.edu/

3140 Waialae Avenue

Honolulu, Hawai’i 96816

(808) 735-4711 or toll-free (800) 735-3733

University of Hawai’i

http://www.hawaii.edu/

Jean Piaget

http://www.piaget.org/

Dr. Stephen Hawking

http://www.hawking.org.uk/

Fun Stuff:

Manini Dive Company Hawai’i

http://mdcHawaii.com/

808-291-0212

Bloom County

http://www.berkeleybreathed.com/ 

AccesSurf Hawai’i

http://www.accesssurf.org/

Camelback Mountain

http://www.skicamelback.com/

Hunter Mountain

http://www.huntermtn.com/

Brennan’s Pub

http://brennanspub-la.com/

Casa Vega Mexican Restaurant

http://www.casavega.com/

Barney’s Beanery

http://www.barneysbeanery.com/locations/westhollywood.php

LA Comedy Connection Comedy Theatre

www.laconnectioncomedy.com/

El Matador Beach

http://www.lamountains.com/parks.asp?parkid=145

Business, Marketing and Photography Resources:

Rockstar System for Success

http://www.craigduswalt.com/

West Coast School of Photography

http://www.westcoastschool.com/

1514 N. Elm Street

Escondido, CA 9202

Photoflex

http://www.photoflex.com/

Web Photo School

http://www.photoflexlightingschool.com/sites/WebPhotoSchool/

Rangefinder Magazine

http://www.rangefinderonline.com/

Amherst Media

http://www.amherstmedia.com/

Hawaii Resources:

Kaanapali Beach

http://www.goHawaii.com/maui/regions-neighborhoods/west-maui/kaanapali-beach

Islandar on the Beach Hotel–Kaua’i

http://www.aston-islander.com/hotels/index/

THIS WEEK Magazine

http://thisweekmagazines.com/

Islander on the Beach

http://www.astonhotels.com/resort/overview/aston-islander-on-the-beach

Honolulu Zoo

http://www.honoluluzoo.org/

Shoal of Time

http://www.amazon.com/Shoal-Time-History-Hawaiian-Islands/dp/082480324

Michener’s “Hawai’i”

http://www.amazon.com/Hawaii-Novel-James-Michener/dp/0375760377/ref=sr_1_1?s=books&ie=UTF8&qid=1321757907&sr=1-1

Alan Brennert

http://www.amazon.com/Alan-Brennert/e/B001JSHE4W/ref=sr_ntt_srch_lnk_1?qid=1326610500&sr=1-1 

O.A. Bushnell

http://www.amazon.com/O.-A.-Bushnell/e/B001KMHFR8/ref=sr_ntt_srch_lnk_7?qid=1321757999&sr=1-7

Slack Key Guitar

http://www.kbeamer.com/sk_history.html

Iolani Palace

http://www.iolanipalace.org/ 

Bishop Museum

http://www.bishopmuseum.org/ 

Kaua’i Museum

http://www.Kauaimuseum.org/

Hulihe’e Palace

http://www.huliheepalace.net/ 

Polynesian Cultural Center

http://www.polynesianculturalcenter.com/

University of Hawai’i Women’s (Wahine) Volleyball

http://Hawaiiathletics.com/index.aspx?path=wvball

Peanuts (Charlie Brown)

http://en.wikipedia.org/wiki/Peanuts

Bands, Musical Artists or Photographers cited:

YES

http://www.yesworld.com/ 

Billy Joel

http://www.billyjoel.com/

Van Halen

http://en.wikipedia.org/wiki/Van_Halen 

The Eagles

http://www.eaglesband.com/

Neal Diamond

http://www.neildiamond.com/ 

Henry Kapono

http://www.henrykapono.com/

Ledward Kaapana

http://www.ledkaapana.com/ 

Raiatea Helm

http://www.raiateahelm.com/

C&K

http://ceciliokapono.com/

Don Henley

www.donhenley.com

David Mecey

http://www.davidmecey.com/

Will Crockett

http://www.willcrockett.com/

http://www.shootsmarter.com/

Harry Lang

http://www.harrylangphotography.com/

Cris Mitchell

http://crismitchellphotography.com/

http://www.coastalfog.com/

Paul Gero

http://www.paulfgero.com/

Paul Landry

http://www.paullandryphotography.com/

Chris Grey

http://www.christophergrey.com/

Kirk Tuck

http://www.kirktuck.com/site/home.html

About the Author

Stephen Dantzig is a nationally renowned lighting expert and owner of the Hawai’i School of Photography with over 30 years experience behind the camera. He is the author of Swimwear Photography: Lighting, Composition and Post-production, On the Set and Behind the Scenes, The Making of a Maritime Fashion Shoot, and Professional Make-Over Techniques (ProPhotoPublishing), Portrait Lighting for Digital Photographers: The Basics and Beyond, Lighting Techniques for Fashion and Glamour Photography for Film and Digital Photographers, Mastering Lighting Techniques for Outdoor and Location Digital Portrait Photography, Softbox Lighting Techniques for Professional Photographers (Amherst Media) and lead author of A Guide to the Theory, Administration and Interpretation of the Southern California Ordinal Scales of Development: Cognition (Stephen Dantzig Educational Consulting Services).

Stephen has written more than one hundred articles and lessons on photographic lighting and ethics. He was a monthly contributor to ProPhotoResource.com and his lessons have appeared in RANGEFINDER Magazine, Professional Photographer Magazine, PC Photo Magazine, Studio Photography and Design, ProPhoto West, ShootSmarter.com, and the Photoflex Web Photo School. His work has appeared on more than 25 magazine covers including local, regional and national markets. Some of his published works have appeared in the Amherst Media’s Portrait Photographer’s Handbook, Group Portrait Photography Handbook, The Best of Portraiture, The Best of Photographic Lighting (First and Second Editions), Lighting and Posing Techniques for Photographing Women, Professional Portrait Lighting Techniques and Images from Master Photographers, and Rangefinder’s Professional Photography This Week Magazine (Hawai’i), Pleasant Hawai’i Magazine, Doll Reader, Metropolitan Home, Studio City Lifestyles Magazine, Santa Clarita Valley Living, and The Los Angeles Times. Stephen is a twenty-one-time Award of Merit recipient from the Professional Photographers of Los Angeles County and has received two Awards of Merit from The Professional Photographers of Hawai’i. His specialties include fashion, beauty and corporate photography. He has also earned a Doctor of Psychology degree from the Rutgers University Graduate School of Applied and Professional Psychology.

Swimwear Photography: Lighting, Composition and Post-production

 On the Set and Behind the Scenes

 The Making of a Maritime Fashion Shoot

Professional Make-Over Techniques

Portrait Lighting for Digital Photographers: The Basics and Beyond

Lighting Techniques for Fashion and Glamour Photography for Film and Digital Photographers

 Mastering Lighting Techniques for Outdoor and Location Digital Portrait Photography

Softbox Lighting Techniques for Professional Photographers

Lead author of A Guide to the Theory, Administration and Interpretation of the Southern California Ordinal Scales of Development: Cognition

“Get Up, Your Bus Is Here”

Living MY Life With Cerebral Palsy: Trials, Tribulations and Triumphs

Published by:

Stephen Dantzig Educational Consulting Service

2211 Ala Wai Blvd.

Suite 3215

Honolulu, HI 96815

Publisher: Stephen A. Dantzig

ISBN: 978-0-9725943-2-5 USA