Whoo hoo! Sherry S. and her son, Josh (CAS), were the lucky winners of “Sing Out!” music CD designed for kids with CAS. Congrats!
Sherry and Josh reside in Crystal Lake, IL where Josh (12 years) attends 6th grade and is doing quite well. Sherry was kind enough to be interviewed for “Apraxia Monday” and shares with you her thoughts, feelings and journey of Josh’s life. Read on to feel inspired and empowered. I’d also like to point out that Sherry blogs about apraxia as well. Her link is listed in the side bar as well as in today’s post.
Can you tell us a little about your “apraxia story?” When was Josh diagnosed and what were some of the tell-tale signs that you were dealing with CAS?
Josh was adopted at 4 days old and, at 6 days, was in the hospital with sepsis and a body temp of 93.6. Our wonderful doc helped, almost literally, bring him back to life and we were released from the hospital after about a week. ….Josh had no speech from that point until he was about 3 years old, then he started using grunts, pointing, and “ba” for everything. We had begun PT, OT, ST, and music therapy when he was 12 months old through our local Easter Seals, and, at 2 years old, the SLP suggested the possibility of verbal/oral apraxia. I started doing lots of research on it, talked it over with Josh’s doc, and speech therapy was then aimed at treatment for apraxia. In the year from age 2 to 3, Josh started using the “ba” more, and then I found the online group, childrensapraxianet. They were advocating the use of fish oils so I checked that out with Josh’s doc – his response was that there is a reason why the Omegas found in fish oil are “essential” fatty acids – he said go ahead, can’t hurt him. I started Josh on fish oil on July 27, 2002 – within three weeks he was saying words – difficult to understand but definitely words – and Josh has not stopped talking since then.We still have speech therapy, and Josh is still difficult to understand (articulation problems from dysarthria and oral apraxia, and lack of tongue movement), but he has a quite large vocabulary and his receptive language is pretty much age appropriate (age 12).
I started blogging (www.budsnvblog.blogspot.com) this past May, not really as to Josh’s experiences with apraxia. Josh broke his leg at a school outing last Fall and I all started seeing what we believed were seizures. Sure enough, in October of last year he was diagnosed with epilepsy. Medication is controlling the epileptic seizures, but in January of this year he was also diagnosed with psychogenic non-epileptic seizures – behaviorally and psychologically based seizures (anxiety overload). So, in May, after much debating with myself and much research, I started him on supplements and started the blog to keep track of things that were occurring. It’s pretty interesting to look back.
What other resources or networks are you involved with regarding CAS?
If you have not tried fish oil supplements, or Nutriiveda, talk to your child’s docs, do the research, and give it a try. As for music therapy – absolutely yes. I’m a musician (in addition to a career as a lawyer) – and I’ve always been an advocate of music in a child’s life. We got Josh into music therapy at 12 months or so, and I really credit that therapy for the advances in sensory issues in particular. I have been involved with www.childrensapraxianet.com for years, I’ve checked out many sites for sensory and developmental issues as well as apraxia. Josh has been in Special Olympics for several years – gone to State competition probably 4 or 5 times – gold, silver and bronze medals in various sports/divisions. There is a lot to be said for developing speech while participating in sports – the comaraderie, the verbiage relevant to sports, the cheering on of teammates, etc. SO is a great opportunity for our kiddos on so many levels. And, for increasing breath support (and just plain good for the body) – yoga. I started doing adapted poses with Josh even before he could walk, and we will be starting with a yoga program through a behavioral psychologist Josh is now seeing (for the anxiety/seizures) – the breathing and calming aspects help greatly with speech development.
What advice would you give to parents just beginning this journey?
No matter what diagnoses come down for our kiddos, remember, whatever that diagnosis is, that kid is and always will be your son (or daughter), just a kid – who happens to have some sort of issue. I always remember a writing that says there is a reason we parents of kids with challenges, have been “chosen” to be their parent – live up to that responsibility and always try to do what is best for your kiddo. “Welcome to Holland” essay – I think about that often–it still brings me to tears, look for it online and print it, post it on your fridge, and read it often. And last, most important
Thank you, Sherry! It has been wonderful hearing your story and words of inspiration.
Coming Up on Apraxia Mondays:
- Donna Lederman, SLP–a summary of her presentation on CAS (from October 14th)
- Dee Fish, SLP–information about her new book and speech practice
- Silent Stars Foundation–a non-profit in Chicagoland supporting CAS
- An Interview and book give-a-way, featuring Teri Peterson, SLP