Friday, May 25, 2012

Thank you to Carly and her Voice

At two years and four months (and 17 days but who's counting?) old, I heard a doctor tell me that Owen had autism. After those words, the rest that followed just sounded like it was Charlie Brown's teacher talking. But somewhere in there, I heard about a course we could sign up for called 'More Than Words'. I had a non-verbal child who would require a lot of support, but there was great hope that he would eventually be able to speak. At this point, he wasn't communicating a single thought other than sheer frustration in his tantrums, so I would later learn to appreciate every communication milestone as they came. But they came slowly and few and far between.
At the same time, or to be precise, one exact week later- I heard that same doctor tell me that Owen's twin brother, Will had autism. Again, I heard that Will would require a lot of support, but we were hopeful that he may someday speak. It took a lot of ABA, a lot of speech therapy and a lot of effort on Will's part, but he got there. William can now communicate his wants, and they usually come in single word demands that have recently been followed by long, drawn-out and curled "pulllllllllleeeeeeease"-es. I would still *label* him as non-verbal, because he is very difficult to understand, however. We hear a lot of scripting from his favourite movies, where he repeats long excerpts and phrases. He is echolalic and often doesn't understand when he is asked a question, as he will simply repeat what you said. He sings a ton and we are often woken up at 2am to the sound of Hakuna Matata at the top of his lungs. He's recently become more consistent in his ability to label emotions such as "I'm happy" or "I'm sad" and he has also mastered the art of embarrassing his parents by shrieking "Help! Somebody! Anybody! Hellllllllp!" when he doesn't get the toy he wants in the Disney Store. But the sweetest blessing of all is the fact that every night before he falls to sleep, after singing Barney's "I love you, you love me.." and "Twinkle Twinkle", I get a very deliberate "I love you Mommy!". What more can I ask for?

I believe that Will will continue to make progress in his communication and as with everything else where he is concerned, it will come when he's ready. He uses apps on his iPad to communicate when necessary and although he is very competent, he just isn't interested. He has taught himself a vast vocabulary and can read and write using apps such as Proloquo2go, but I do dream of the day where we can carry a conversation. That day will come.

As for Owen. Aaah, sweet Owen. Life has been more of a challenge for Owen. He has had all of the same opportunities as Will has had with ABA, Speech and Occupational Therapy and perhaps even more so than his brother. Hundreds of hours practising vowel sounds, of trying to shape the muscles in his mouth and to place his tongue in the right position. Countless hours, tons of laminated printed cards and velcro for PECS. Tireless aides who have used hand-over-hand to position his hands and arms into place to sign, or to teach through repetition, the functions of Proloquo2go on the iPod and iPads. Owen still has very little interest in letters and the alphabet. He is very quick to learn each new method of communication, but seems unmotivated to use it consistently. We spend entire years on single-word goals and after 4 years of working on saying the word "bottle" (it comes out "baw-tee"), he has now grown up and moved on to drinking from a cup before ever mastering it. But Owen is doing okay. There is no denying that he is happy. He is engaged with us and the people he loves. He is not complacent and withdrawn- if he wants something, he will let you know. He will use a combination of all of his tricks to get you to understand what he wants.

Seven years ago, that doctor was right. It is More Than Words. I gets hugs and the most beautiful giggles and beaming smiles every single day. Life is good and some days, I can almost believe that it's good enough.

But then, there's this girl named Carly.

Carly reminds me not to give up on Owen (or Will, for that matter). I look at Carly and I am magically reminded of every person's *potential*. We've all got it. No matter what obstacles or challenges present themselves, we cannot forget that we all have the potential for more. We can be satisfied with what we have, but what if all it takes is a simple step, to unlock the potential or in Owen's case, to unlock his voice - within? I am tormented by this and feel that knowing what Carly has been able to do has been a blessing and a curse. It could be easy to just sit back and accept that Owen can't speak. But what brilliance and beauty there must be inside of him, waiting to come out! I can't believe that this little boy, with his most soul-kissed blue eyes, is not made of greatness just yearning to be heard by someone. Maybe all he wants to say is "for God's sake, Mom. That music you've been listening to for all these years has made me want to puke". But I want to hear it. In whatever form it comes - through art, through sign language, through writing or from an automated voice. I can't give up on Owen and I won't.

I am so appreciative of social media and how it has connected me with people and groups that I may not have otherwise heard of. To Carly and her family, for sharing their story - it has been a great gift. Someday I hope that you will hear Owen and Will speaking for themselves.

But for now, I urge you to learn more about Carly and her family and how autism has affected them. Carly and her father have recently come out with a wonderfully insightful book called Carly's Voice that I encourage everyone to read. Their story and Carly's intelligent insights, are inspiring and helping countless people all over the world.

Coincidentally, as I was searching for a link to a youtube video on Carly, I caught a glimpse of Owen in one of the thumbnails. You can kill two birds with one stone and watch the following video that was a segment from the Toronto news on World Autism Awareness Day. You'll get to hear some great stories that starts with Carly's dad, Arthur. At about the 15:55 minute mark, while Suzanne Lanthier of Autism Speaks Canada speaks, you'll see some footage of my boys and our family from an autism news story we participated in a couple of years ago!

So while you chat today with your friends and family, or while you write a note to express yourself, or while you hum along to a tune on the radio, please be grateful for your voice. And please say a little prayer of encouragement that one day both of my boys will have a greater voice as well.

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