Every Child Deserves a Voice

"Childhood Apraxia of Speech is a motor speech disorder. For reasons not yet fully understood, children with apraxia of speech have great difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw and palate that are necessary for intelligible speech. Apraxia of speech is sometimes called verbal apraxia, developmental apraxia of speech, or verbal dyspraxia. No matter what name is used, the most important concept is the root word "praxis." Praxis means planned movement. To some degree or another, a child with the diagnosis of apraxia of speech has difficulty programming and planning speech movements." -Apraxia Kids website.

One night, I Googled "my 3 year old doesn't talk", and came across the fabulous Apraxia Kids website. I had never heard of apraxia, but after exploring the website, I was sure that this was the reason for Riley's severe speech delay. I learned that it wasn't so much a "delay", but more of a "disability". Basically, apraxia is knowing what you want to say, but not being able to form the words. I read somewhere that it's like when an adult has a stroke, and has to learn how to talk all over again. They understand what people are saying to them, and they know in their head what they want to say to others, but they just can't make the tongue, lips and muscles in the mouth form the words correctly. I think this is why Riley says so many words "wrong", but when you repeat what you've heard, he says "no", and looks at you like you're stupid. For example, he has a really hard time saying "Scooby Doo"-it sounds more like "haa goos". If you were to repeat to him "haa goos?", he would say "no, haa goos". lol. To him, he IS saying "Scooby Doo".

Anyway, I researched apraxia like crazy, convinced that this was it. I purchased the book "The Late Talker:What to Do if Your Child Isn't Talking Yet" by Lisa Geng, et al. Everything in that book sounded so much like Riley. Apraxia isn't just not being able to talk, it involves a lot of different motor planning difficulties. One of the things that stood out to me, was that most apraxic children are clumsy and lack co-ordination, and have a hard time learning to ride a tricycle. I thought "uh, hello! Riley is 3 and cannot figure out how to pedal". He is 7 today, and still can't ride a tricycle. He's happy just to use his feel to push himself along. We bought him a 2 wheeler with training wheels for Christmas when he was 4, and he couldn't figure that one out either. Seems so simple...

I joined a few apraxia support groups on Facebook, and through that, I met a mother with twin boys, the same age as my Riley, who was going through a lot of the same things that we were. She too, suspected that her boys had apraxia. I'm not exactly sure when it was, but she had her boys assessed by a pediatrician, and they were both diagnosed with childhood apraxia of speech. I mentioned the idea of apraxia to our family doctor, but she didn't really say much about it. I wondered if it was b/c she didn't know a lot about it, or b/c she didn't think that it fit Riley. I was quickly learning that not a lot of medical professionals knew a lot about apraxia, and that it was more of a speech/language pathologist thing. I also mentioned it to the support worker that had been coming to our house to work on speech with Riley, and she thought it was definitely worth looking into. However, when we went to an appointment at CHEO with the developmental ped, he kinda of pushed it aside, and said no, that it was definitely global developmental delay. Whatever. What the hell do I know...

I still think to this day, that Riley definitely has some kind of motor planning disability. I fully support apraxia of speech, whether my son has it or not, and I proudly advertise the motto of "every child deserves a voice" with a magnetic awareness ribbon on my vehicle.

For more information on Apraxia, please visit http://www.apraxia-kids.org/