In this 2022 episode of "Let's Talk CP" host Jen Lyman talks with neurosurgeon, Dr. Debbie Song, and physiatrist, Dr. Marcie Ward about their role in the care of Cerebral Palsy at Gillette Children's.
What do you do when you want to help your child but your local providers don't have the resources? You travel for treatment. In this personal story, Sophia's family describes their experiences traveling to Gillette Children's for treatment, including both neurosurgical and orthopedic surgeries.
An international study recently published in the journal Nature Genetics has provided the first firm evidence that for a substantial number of people, their cerebral palsy (CP) may be caused by a genetic mutation, or mis-spelling in the body’s DNA blueprint.
"In addition to commonly associated environmental factors, genomic factors may cause cerebral palsy. We performed whole-exome sequencing of 250 parent–offspring trios, and observed enrichment of damaging de novo mutations in cerebral palsy cases."
As we all know, becoming a teenager means significant upheaval, not only physically, but in terms of friendships, in terms of learning, and life outlook. This is also true for adolescents with cerebral palsy and other developmental disabilities. We know that whilst we may of spent a lot of time focusing on their physical abilities and other difficulties it is not the only part of their life.
Around the age of six all children are going off to school. Children move from explorative play, which is fairly informal to a much more formal day. That can be a lengthy day and it's quite structured. There are a lot of challenges faced by children with cerebral palsy throughout the school year.
We all have different towns and we all have different things that we do in the course of the day. It may be that the student is a great artist or a great writer. When it comes to assistive technology we have to think about what is going to give that student the ability to do what they love without having to see roadblocks and go, "I can't do that”. There are so many tools out there, whether it's a communication app, a video app, a math tool. With assistive technology you are not making the student into what you want them to be.
When treating a child with CP, part of a pediatrician’s job is assessing and treating children with abnormal tone difficulties, as well as other muscular-skeletal problems. From around the age of two years, kids start to develop difficulties with muscle tone that can have an impact on their hip development.
Every educator needs to make a decision about technology they need to put in place. They're not sure if they should put Option A in place or Option B in place. This can be particularly difficult in the world of disabilities because there might not always be a perfect answer. Teachers can look to this solution, using the least dangerous assumption to make good decisions about what technology might be best.
When you don't have enough evidence about a student's performance, assume they can do whatever you're asking them to do.