Too often, people with disabilities are relegated to being passive when it comes to the arts.
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.
I spent many years and many hours learning how to make the body work better, how to bring it out of pain. But that's not the human being alone.
When first meeting a parent who's had a child newly diagnosed with cerebral palsy, I really want to try and help them understand their baby. It can be difficult for parents to take it in all at once and many leave that first interview quite overwhelmed, but you're going to meet some really important and helpful people.
Babies develop about 80% of their brain growth over the first two years of life, and it's also when all the connections in the brain, what we call the white matter, which is the cables in the brain, grow and develop and connect to the cortex.
I'm going to be talking about AAC and reading and some different things that you might not think about when you are doing those types of activities. When you're supporting reading for a nonverbal child, whether they use a high-tech system or a light-tech system, like a paperboard, you want to make sure that they have plenty of the opportunities to contribute to the experience. You want to be able to comment. You want to be able to talk about the people, the places, the things, and maybe the feelings that they have.
A lot of parents don't realize that their baby, all the skills that they have. So they can look at you, they can follow you. They're already starting to imitate you, and through the first few months of life, they're already starting to learn to reach and grasp toys, and to have nonverbal communication with you.