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.
An international study recently published in the journal Nature Genetics has provided the first firm evidence that for a substantial number of people, their cerebral palsy (CP) may be caused by a genetic mutation, or mis-spelling in the body’s DNA blueprint.
"In addition to commonly associated environmental factors, genomic factors may cause cerebral palsy. We performed whole-exome sequencing of 250 parent–offspring trios, and observed enrichment of damaging de novo mutations in cerebral palsy cases."
I have cerebral palsy spastic diplegia. So it affects my legs and sometimes my fine motor skills. I walk with two canes. I do things a little slower, but I get things done.
One thing that parents can say to start a conversation with their kids is, "Let's talk".
A speech language pathologist is someone who is trained in working with kids and adults. Everything from working with articulation errors and correcting things to what I do, which is working with people with profound physical impairments and getting them augmentative communication strategies.
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.