Heather and her “big” brother!
- What general age range are you in?
I’m 52, very proud of my age since I was always told I’d never live to see 30.
- What do you do with your time (work, pleasure, etc.)
I am an Autism support teacher. I am finishing my 20th year as a classroom teacher and 25 years total with students with Autism- the first 5 years were as a behavioral consultant in various schools.
I have two classic cars, a 1984 Z28 Camaro and a 1972 Plymouth Scamp (my husband’s) that I take to car shows. I also enjoy crocheting in my spare time. I have 3 pets, a crested gecko named Mr. Mojo, a gargoyle gecko named Ziggy Stardust and a cat named Misfit. They are good company and bring me great joy.
- How did you get into working with kids with autism?
I will try to make this long story short. I originally planned on being a physical anthropologist. During grad school for anthropology I had a work study job in the anatomy department (anthropology had no openings and anatomy was next on the board in alphabetical order) making adapted curriculum for blind students. I fell in love with the adapted curriculum and wanted a career in that research. I couldn’t get hired without a degree in education. I got my master’s degree and teaching certification in Special Education, still planning on doing research not working directly with children. I had 3 degrees to pay off and found a job as a behavioral consultant with children with autism. I had no clue what I was doing but needed a job. After 5 years of that I decided I wanted more time with the students. That was 20 years later and I would never want to do anything else. This is proof that the saying “If you want to make God laugh, make your own plans” is very true. God definitely has a sense of humor
- What would you say is your greatest accomplishment?
My greatest accomplishment is living a life no one expected. I wasn’t expected to live past 30, I’m 52. I was one of the first students in my county mainstreamed and my public high school tried to get me to drop out. The guidance counselor told me to “go home, get on welfare and eat bonbons, you aren’t worth an education.” I have three degrees (BA, MA, MEd) and two certifications (Special Ed teaching and Board-Certified Behavior Analyst). Some employers wouldn’t let me advance, I now have a 25-year career I truly love. No one thought I’d ever find someone to love me. I had a loving 22-year marriage to an amazing man until he passed away in 2021. I’m an active member of my church and am well known in the local autism/education community. I have proven everyone wrong and have a wonderful life. My husband used to say the quickest way to get me to do something was to tell me No, he was right!
- What makes your life “amazing”?
I have an amazing family and circle of friends. My brother, sister in law and 15 year old niece are my biggest support. I have three friends from childhood who have stuck with me through everything. They were there through childhood surgeries, my marriage and husband’s funeral and now the changes aging with CP bring. I have a group of “widow sisters” who help learn how to handle this new stage of life. Although I may have felt alone being an adult with CP, I was never truly alone in all other areas of my life.
- What does “cerebral palsy” mean to you?
It’s a huge inconvenience. I don’t have time for pain, falling or other issues. I still have a lot to do and a full life to live.
- How does cerebral palsy affect your everyday activities?
I am slower in things and have to ask for help more than I want. I’m a very independent person, or as my family would say “stubborn to a fault.”
- Do you use any assistive technology in your everyday activities?
I lean on railings a lot. My brother installed a grab bar for my shower and for the step in the house from my garage. These are truly lifesavers. I have a cane I keep in my car at all times for uneven ground, curbs without a ramp and icy conditions in the winter. I have installed a jar opener under my cabinets and have a portable bottle opener I keep with me.
- Have you noticed any difference in your body as you age? What are they?
I have definitely noticed changes, mostly in the past 5-6 years. I have never been strong, but I am extremely weak now. Lifting a 15 pound bag of cat food is a real workout,my comfortable limit is less than 10 pounds. I struggle to go up steps, pulling myself up with a railing. If there are no railings or something to grab onto, I can’t even go up a curb. I’m falling more often and more easily. When someone would drop something my husband would call it a “gravity check” just to make sure things went down and didn’t float up. When I would fall, he’d say it was a “full body gravity check”. I’m doing these checks much more frequently and am landing harder. Sometimes I actually trip over something very small, sometimes I’m just standing still and fall down. My balance is greatly decreasing.
- What is your greatest frustration and/or fear? I’m frustrated at my lack of strength.
I need people to help lift things that many people carry quite easily. I’m afraid that one of these falls will lead to serious injury. I usually land directly on my knees, and I worry that I will chip my kneecap or tear my meniscus.
- What is the one thing you wish people would know or understand about cerebral palsy?
It’s not just for children and you don’t grow out of it. Even though I do have a great life and try to be independent, CP is always there. I don’t dwell on it, but I can never leave it behind or just forget about it for a minute. Everyone with CP has their own struggles, even if they aren’t obvious at a quick glance.