Dear Voice of Carter,

You didn't show up.

For years I thought you would. Some might say you did, eventually, just not as  expected. 

I like to think I’m pretty good at figuring you out, but a voice that doesn't form words is impossible to decipher. I never get to know the real you. 

I wish you'd stop hiding. I catch glimpses of you in Carter’s facial expressions, tucked away behind his impish grin or in the crinkled skin bordering his ice blue eyes. I've heard you in his giggle and in his thunderous belly laugh. His pantomimes, his flailing about, and his movement to music are your physical camouflage. Wails and screams of protest reveal your unflattering side. 

You make life mysterious. And puzzling. And downright frustrating. I accept that, begrudgingly, and carry on. But sometimes I just want things to be normal. I want to experience what it would be like to hear you form words instead of grunts and squawks. I want to hear you speak a sentence instead of watching my boy gesture and point. I want to hear the real you, instead of a digitized version dubbed 'Kenny' or 'Alex'.

When Carter was outside playing with Jack one winter years ago, you didn't help him. Jack came inside. Several minutes passed before I went to check on Carter. He’d gotten himself stuck, legs first, in a hardened, icy snow tunnel. I could see how he'd struggled. His glasses were thrown across the driveway. His face was streaked with tears. 

You didn't protest and ask Jack to stay outside. You didn’t scream out or call for me when Carter got stuck. You failed him. 

During a family ski trip to Vermont, Carter wasn’t feeling well. He was exhausted from a long car ride and a sleepless night in an unfamiliar bed. By the time he got to his ski lesson he was hot from having to wait inside the chalet in his snow gear. He tossed his cookies right there on the spot shortly after we dropped him off.

You could have prevented the whole incident if only you'd told the instructor that Carter was overheating. Again, you failed him. 

How many times have I had to pick Carter up from school because of you? On the other end of the line, the school secretary always giving me the same basic narrative, 'Carter isn't feeling well. Please come pick him up.’ 

Not once have you explained that there was too much noise, or too many people, or just too much stimulation. You don't provide information to the people around Carter so they can make sense of what's bothering him. He has no choice but to hold his stomach to convince them he is sick - his way of escaping the situation.

When Carter is hurt or sick, your negligence is deplorable. Carter is in distress. I am distressed. You don't tell me where he is hurting or what's making him feel badly. I have no idea what's wrong and I feel helpless.

Do you know how hard it is for me to send Carter to respite activities, to camp - anywhere  with people who don't know him well? Knowing that you won't be there to help him is overwhelming.

You don't show up.

You'll never show up. 

I’ve done everything in my power to replace you with sign language and gestures, an electronic version of you, but it’s not the same. It never will be. Without you, Carter will go through life being minimally understood. His communication will be slow and inefficient. And because of that he won’t express a fraction of what's running through his head. He’ll be left behind. Misunderstood. Complacent. Vulnerable.

If only there was some way that I could bring you here. I’ve tried. Oh, how I’ve tried - with speech therapy, prompt therapy, oral motor therapy, behaviour therapy. It didn’t work. 

It didn’t work. 

It

didn't

work.

Do you know what it would be like to hear you form words flowing from my son’s mouth? What would you say to me? 

The silence has been filled with other noise. It’s so different. It’s not what I expected.

You didn't show up.

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