THIS IS LONG, BUT IT IS ABOUT TRAUMATIC BRAIN INJURY, SO PLEASE READ IT ALL!
I first need to extend a huge “Mahalo” to Dr. Violet E. Horvath of the Burns Medical Pacific Disabilities Center for including me (and UCPA Hawai’i) in their newsletter list. Dr. Horvath forwarded the most recent newsletter, but here is the link to the newsletter archive: https://pdc.jabsom.hawaii.edu/newsletter.html. The amount of information here is staggering!
Mahalos also for adding UCPA Hawai’i to your resource page!
The current newsletter contained an excellent article from the Brain Injury Association of America entitled “What to Expect After Brain Injury: A guide for people with brain injury and their caregivers.” It is a very comprehensive guide for what may follow after a brain injury. I highly recommend giving it a read-through.
https://files.constantcontact.com/5e569a18001/b9f5a3d5-020c-4557-832b-7a5e514fcf46.pdf?rdr=true
I was particularly interested in this article for a couple of reasons: the topic is an immediate concern that is part of our research on aging with cerebral palsy; and I have worked with several (too many) youngsters who experienced a traumatic brain injury (TBI).
Cerebral palsy is not classified as a TBI unless the CP symptoms occur after a post-natal injury. Yes, CP is caused by damage to the brain, but that damage is usually caused by pre-natal or peri-natal factors rather than a post-natal blunt force. However, the lack of coordination and muscle control can and does lead to falls, which could cause a TBI. The risk and fear of falling increase as we age with CP.
I was a school psychologist for 38 years and worked with youngsters with severe disabilities my entire career. Sadly, I worked with several young people whose lives were forever changed by a TBI. Parents, I truly hope that you never need this, but the list of school accommodations that are listed in the article are exactly what I recommended for years.
While I found the article to be an outstanding resource, there are a couple of areas that I would like to add to (NOT PROFESSIONAL ADVICE, JUST MY EXPERIENCES OVER 4 DECADES):
- The article recommends a comprehensive cognitive assessment to help determine what, if any, school accommodations are needed to help your child. I fully agree, but a standardized “IQ” test might not tell the whole story. The article mentions a Neuropsychological assessment, and this is a good place to start. I always used a non-standardized assessment that allowed me to modify how the materials were presented in order to determine if the presentation of task affected how the youngster responded to the task. A TBI can have a massive impact on how information is processed, and it is important to determine whether the issue is a true cognitive deficit, or a severe processing issue.
- The article points out that your child may be eligible for what is called an “Individual Educational Plan” or “IEP.” This means that your child is now eligible for “special education.” The first step, as indicated in the article, is to set up a meeting with the school principal and go from there. IF your child is eligible for special education, then he or she is required by law to be re-assessed (not necessarily “re-tested”) at least every three years. The article notes that the impact on your child’s thinking skills after a TBI can change, sometimes dramatically, over time. I had always recommended a full cognitive assessment at least once a year, especially during the first few years following a TBI.
- The article mentions that your child—or you—might show some behavioral changes including acting on impulse rather than reflectively. This may be true with the use of “foul language” or, please pardon me, promiscuous behaviors. This impulsivity also leads to an increased risk of another TBI in the future. The impulsivity may be caused by damage to what is called our “executive functions.” A discussion of Executive Functions is well beyond the scope of this post but ask your neuropsychologist about them.
- The article points out that the person who experiences a TBI often remembers how they were before the accident. However, they also often DO NOT remember the event. This can create an issue of obsessive self-blame (based on experience). There may be an obsessive repetition of comments like: “What if it was my fault. What if I did this?” These thoughts often repeat even after repeated delivery of the facts of the accident.
Again, I thank Dr. Horvath immensely for her work and her collection of resources. I will share more as appropriate.