Tuesday, April 12, 2016

Cole's Fight: Severe Childhood Apraxia Of Speech

Cole was diagnosed with severe Childhood Apraxia of Speech at 2 years 10 months of age at a local children’s hospital.

I suspected that was the case as weeks of worry and insomnia had led me to that Google diagnosis.  After our evaluation, the Speech Language Pathologist handed us a few copies of ‘What is Dyspraxia?’ type information sheets and advised us to get on the wait list for speech therapy as soon as possible.  I signed onto three wait lists at different branches of the hospital. And waited. And waited. It took us FIVE months to land a spot for twice weekly speech therapy. That five months of waiting for help was incredibly long, but in hindsight it was so valuable. I used that time to scour the Internet for local resources that could help my family face the high cost of treatment. I learned that many private insurers do not cover speech therapy for kids that have a primary diagnosis of Apraxia, or have a limit on a certain number of sessions per year. And in my family’s case, we were uninsured. I found grants that cover 60% of the speech therapy cost. I found a great program at a local university training SLPs in a graduate program. I discovered local non-profits and philanthropic organizations that would help out with speech and occupational therapy. I took a close look at our local school district’s offerings and found a pre-Kindergarten class led by an SLP for kids diagnosed as speech impaired.  Even on a state level, I found programs and scholarships that would help with therapy and school placement. I worried, stress ate, and popped gray hairs. And I learned how to be an advocate for my son.

Cole is now 5 years old and halfway through his speech therapy treatment. His last progress report upgraded his condition to moderate Apraxia.  He is speaking in 6-7 word sentences, and is in the normal range for expressive and receptive speech.  Cole is still having problems with some of the trickier consonants/combos (l, ch, sh, r, v), as well as the rate and intonation of his speech (prosody). He goes to occupational therapy twice weekly at school for handwriting help, and I will be taking him twice weekly over the summer to help out with his anxiety issues that come along with Sensory Modulation Disorder (his second diagnosis).

This afternoon, Cole will have a Kindergarten readiness evaluation at a mainstream private school.  I am nervous but I know that he will do great. He knows his colors, alphabet, and shapes. He can count to 10, then misses a few numbers on the way to 20. He can shakily write his name. And he can read. I mean 64-page Go Dog Go by P.D. Eastman read.  Our Apraxia kids are so smart.  A speech delay does not mean lack of intelligence. Kindergarten will still be challenging for him as he will need to work on writing skills and social skills with the mainstream kids in his class.

With Apraxia, it is a walk to the finish line. Sit in on your child’s speech therapy. Sneak in daily practice in the car and at home. Be the best advocate you can be. Never lose hope; many cases of Childhood Apraxia of Speech resolve by age 8.