This presentation from the 2023 AACPDM Community Forum presents a model for creating a smooth transition from pediatric care to adult care for teens and young adults with cerebral palsy.
The hardest part of raising two children with Cerebral Palsy is the fact that we live in a world that refuses to adapt to anything beyond ordinary. And I have always -- always -- known that Benjamin and Mason were far beyond ordinary.
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.
A parent's perspective as she recalls the moment she realized that a wheelchair meant freedom for her son and not a barrier to his progress.
My boys were exactly the same amazing, lovable, adorable, brilliant little boys after the diagnosis, that they had been before it. The exact same.
Children with cerebral palsy have more complex self-management and self-care demands than children who are typically developing. They have to learn how to deal with medications and they may have to deal with medical equipment. At some point, they're going to have to learn about medical appointments.
There are a couple of key things to think about in helping children and adolescents make the transition into young adulthood and independence. One of those things is called mastery motivation and we can see mastery motivation early in life. It's the ability to persist in the face of challenge. If you're growing up with a disability, it can be harder to do things. If you are not challenged, if the environment is not set up correctly, or if you don't have the resources, then you start to feel that you can't master certain kinds of tasks.
As 20% of women with CP surveyed experienced pregnancy, there is a need to increase awareness, education, support, and advocacy for achievement of optimal reproductive health.
This fact sheet has been created for women with cerebral palsy to provide answers to some common questions about CP, pregnancy, and birth. Women with CP should follow general guidelines about getting healthy before getting pregnant, but women with CP may need to do other things as well to prepare for pregnancy.
Cerebral palsy is a damage to the developing brain in the motor part of the brain. Individuals with cerebral palsy have problems with weakness and sometimes also involuntary movements.