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.
When a person is looking for a way to communicate in alternative ways, they need to find something that really works for them. They need to try to find a voice that sounds natural. They want to try to find a way to be efficient. They want to be able to communicate as normally as possible, even though they're not using their biological voice.
The GMFCS can be a helpful tool in clinical and research use and has been shown to be stable and accurate over time. It can also help individuals and families better understand cerebral palsy.
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.
As your child with CP is becoming a teenager, there are a couple of things you may want to think about.