Monday, 11 June 2012

Dear Parent(s)

of the special needs child who is just like my son,

Where exactly are you? I've spent years trying to find you and I haven't been successful.

Your kid is 'developmentally delayed', non-verbal, has Childhood Apraxia of Speech and dysarthria, oral motor issues that include drooling, messy eating, and the inability to clear food from his/her mouth consistently. Fine motor skills are delayed. Hands are weak (not so great with those fastidious little tasks that we all take for granted like buttoning buttons, zipping zippers, colouring/printing, etc.). There are sensory issues, mostly with loud noises (mega phones, loud speakers, etc.), but also with proprioception and balance. All this is rounded out with an intellectual disability. Your kid was born with Pierre Robin Sequence which caused a cleft palate so the root of the problem is likely a genetic syndrome (one that has yet to be discovered or named).

Are you reading this saying...ya, that's my kid?

Anyone?

Nah...I probably would have found you by now because believe me, I've looked -- searched long and hard. I mean, is it not human nature to want to find someone experiencing the same thing that you are so you don't feel so alone? That's how I feel and that's why I've been looking all over for you.

Don't get me wrong, during my search for you I've been able to find support from some great parents whose kids have had similar issues to my son. But the parent whose kid is exactly like him? I haven't found you yet.

Some of the parents I have connected with have had kids with major speech issues like Carter. But inevitably at some point the differences between their kids and mine became apparent. Their kids made progress in speech therapy. Their kids had spurts of speech development. My kid did not.

About two years ago, if you had been around, I would have asked if you'd been given the same advice I had -- to get your kid the best augmentative communication device (a.k.a. talker) that you could. We could have cried on one anothers' shoulders and fretted about what this meant for our childrens' futures.

Carter has an AAC device now. He got it a year and a half ago. The process was not without headaches. But the biggest headaches have been around trying to get him the support he needs to learn his device and to learn the constructs of language.

We could share stories about the challenges we've experienced because of our kids' communication issues, about the injustice of waiting lists and the lack of adequate support for AAC users. I could tell you that now that we have Carter's device I feel like we're in some foreign land speaking a language that no one else has heard before. And maybe you'd tell me that you feel the same way.

We could have those conversations...if I could find you.

I'm not giving up. I still have hope that you're out there somewhere.

And when we finally do meet, we'll share, we'll gripe, we'll laugh, we'll cry...we'll try and make sense of the struggles and triumphs we've shared with our special kids.

Until then I'll continue making connections in the AAC community in hopes that one of those connections will be with you.

Yours in anticipation,
Stacey









4 comments:

  1. nice post Stacey! i hope that you do manage to find someone to 'connect' with. it certainly does make things easier when you can share stories. though we don't have the same issues, you can always drop me a line!! :) least we got the dog/child bit in common!!

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  2. Thanks, Jen! I know it's not likely that I'll find someone whose child has the exact issues that Carter has. For now I'm going to make a real effort to connect with parents whose kids use high tech AAC devices.

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  3. I'm so glad you wrote this - it's hard to find people to connect with unusual special needs. My 2 y.o has Prader-Willi Syndrome & severe hypotonia which affects her speech. Her SLP is recommending AAC (at least an iPhone). I just found your blog and will be following more closely.

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  4. Thanks for your comment, Angela. I look forward to connecting with you further!

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