Awareness of CAS
Back in my undergrad days, I was a Speech Language Pathology and Audiology major (Ithaca College '99). Something in me decided to pursue regular education for my masters degree and my profession, but I considered myself to be pretty knowledgeable about speech therapy. In all of my wonderful classes, I do not recall CAS being touched upon. I had heard of apraxia in adults or in people who had suffered strokes or brain damage, and I had even observed an adult's (who had apraxia) therapy sessions with graduate students. However, I never heard about apraxia and kids.
Fast forward to January of 2011 and I was sitting on the living room floor with Cha-Cha and his EI SLP. She looked up at me and said, "I don't have a lot of experience with this, but I really think he has apraxia." I remember saying to her, " But he doesn't have a brain injury." That was when she shared with me that apraxia can also be from birth. I then threw myself into google searching and reading about apraxia from the apraxia-kids.org site. I searched for SLPs and doctors who specialized in Apraxia. Eventually, we sought out testing from a big city hospital to get the big picture of what was going on with our Cha-Cha. The results showed that CAS was the primary factor.
So, when we started telling people about apraxia, I got a lot of strange and blank looks. Many kids do not have apraxia. There are different theories on what causes Apraxia, but no definite hard evidence. I had some people ask me, "Do you mean Autism?" Apraxia is not a familiar term when associated with children. As a teacher, I had never heard if it in my 12 years at a suburban elementary school. When I've posted about it on Facebook, friends don't know what it is- and some think it means that Cha-Cha can't talk at all and are surprised when they hear him. Even Cha-cha's pediatrician had only encountered one other child with Apraxia. Many SLPs don't have experience in dealing with children with Apraxia unless they have studied under the Apraxia God of Edythe Strand and her partners in research.
So where can a person go to learn about Apraxia? The best place to start is www.apraxia-kids.org. It is run by CASANA - Childhood Apraxia of Speech Association of North America. It was created by Sharon Gretz in 1997. Sharon is a parent of a child with Apraxia and when her son was diagnosed, there wasn't a lot of information for parents. Since then CASANA has grown to include:
- Apraxia Boot Camps for SLPs, a yearly national conference for SLPs, educators, parents, doctors and whoever would like more information on Apraxia
- webinares for professionals
- a registry of children diagnosed with apraxia for research purposes,
- diagnostic, treatment, and research programs
- a system of fundraising and awareness through Apraxia Walks throughout North America so that many of these programs can be offered for reasonable rates.
Another great resource is the book "Speaking of Apraxia: A Parents' Guide to Childhood Apraxia of Speech" written by Leslie Lindsay. Lindsay is a mother of a daughter with CAS and she is also a nurse. She wrote this book to help other parents who are going through the diagnosis and trying to navigate therapies and the course of what to do next. Not only did I find it helpful, but my mother (Cha-cha's Nana) found it helpful to understand what our family was going through.
If you are looking for printouts you can pass on to family, friends, teachers or anyone who wants to know more about CAS without reading a book or going through a lot of information, CASANA offers a variety of printouts on their website.
CASANA is also having the first ever Apraxia Awareness Day on May 14, 2013. You can find more information on their website. Our family will be celebrating by wearing last year's walk t-shirts and giving out blue and gold star ribbons with a card that explains what Apraxia is. Here are some additional ways you can participate in the Apraxia Awareness Day.