Misty Campbell is parent of child with complex disabilities who wrote this book as a guide for other families to advocate for their own children with significant disabilities.
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.
The typical cognitive assessments that are used for children require them to be able to use their hands to point to pictures or hold puzzle pieces.
When you use alternate means of communication it can be really frustrating to go out in community. It is hard to know whether people are understanding you and whether they will take the time to listen. A lot of times it's hard for people to admit that they're not always comfortable with a device or a wheelchair or person who does things differently. So the more we can expose and educate people the better off we all will be. When we talk about acceptance, we're not just talking about people in society accepting people with disabilities. We're also talking about people with disabilities who are using alternate means of communication and how difficult it is for them to be out in the community.
Cerebral palsy is caused by damage to the infant brain. This damage can involve not only the motor parts of the brain, but also the parts that deal with vision. This is not related to damage to the eye but is related to damage of the parts of the brain that process visual information.
For a child with CP learning to move, the really important things to remember are that the child should always be active.
Children with cerebral palsy experience brain damage around birth or before birth. So the language of the brain in other words, the way they will move, will be different from typical movements. So by looking at their movements, we will understand that there is something that is wrong in the brain.