CPF Executive Director Rachel Byrne and Peter Rosenbaum, MD, developmental pediatrician and CPF Scientific Advisory Council member discuss how current thinking about Cerebral Palsy has changed over time with advances in research.
Nuestros discusiones educacionales continuó con un grupo de expertos el Jueves 25 de Marzo 2021. Este evento virtual contó con un panel de discusion multidisciplinario.
We got the diagnosis of Cerebral Palsy when Lelia was 18 months. I was really happy, as we didn’t know what was wrong with her before then. She had low tone. She couldn’t roll over. She couldn’t sit up. Of course she didn’t walk. The diagnosis gave it a name, something I could work with, and I became a kind of vigilante mother, determined to get the best care for my daughter.
Our educational series continued with a panel of experts from Nationwide Children's Hospital on Monday, March 29th, 2021. This virtual event featured a multi-disciplinary panel discussion.
Our educational series continued with a panel of experts from Scottish Rite for Children and the University of Texas Southwestern Medical Center on Thursday, March 25th, 2021. This virtual event featured a multi-disciplinary panel discussion.
All adolescents and young adults experience some peer pressure to engage in drinking or other risky behaviors. Adolescents with cerebral palsy engage in risky behaviors just like other teenagers. Some families find it helpful to sign what's called, a Contract for Life, or a Contract for Safety, with their child. The parent agrees not to yell in the moment and to have a conversation about it the next day. That's one way that adolescents and parents can create some zone of safety around drinking.
Up to 50% of adolescents with cerebral palsy have an intellectual disability, as well as a physical disability. Adolescents with intellectual disabilities still need sexual health education, they just need it in a way that's more individualized so that they can understand it and use it.
There are so many different causes for potential pain that it can be hard to find the cause. If you have CP or are a parent of someone with CP it is really important to empower yourself with information on pain including what causes it and options for treatment. You need to work out what is causing the pain not just mask it with pain medication.
When we have a physical disability, our bones can get a bit weak or osteoporotic. Something that can be improved is promoting bone health for people with cerebral palsy.
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.
It is important to understand the brain injury for each individual person, because they can be really different. Where the injury is can give us important clues to what motor problems that individual will have. The time you have the biggest risk to having a stroke is as a baby, not as an adult so it is important to understand what may be happening in the infants brain.
Receiving early diagnoses or high‐risk for CP classification is a parent priority. Alignment between parents and providers exists for International Classification of Function domains of body functions/structures and activity, but less for those of environment, personal, and participation.
When you don't have enough evidence about a student's performance, assume they can do whatever you're asking them to do.