Today was officially declared (by someone, somewhere) “Autism Awareness Day.” I’m not sure really if, or how, we were supposed to commemorate the day but all of the attention that it – and April as “Autism Awareness Month” now receives has made me wonder what this all might mean through Stone’s unique (and often mischievous) eyes and perspective.
First of all, I feel very fortunate that Stone has such an amazing and supportive community surrounding him. I have heard of and read about horror stories from parents who have been embarrassed, humiliated and shamed by others due to the unconventional behavior of their child in public. And that is just horrible. But I’ve experienced none of this – at the worst I’ve had to answer a few questions from curious kids asking why Stone likes to watch videos on his iPad alone. But no dirty looks or snide comments. Usually what I do notice are smiling nods of approval as today more and more of the public “gets it” and understands that kids on the spectrum act in non-typical fashion.
I know that Stone has a huge supportive fan club – and I tell him this often. Whether its the formal network of teachers, aides and therapists or informal collection of neighbors, hockey families and our own family and friends, I know that Stone has a ton of people cheering him on, watching out for him and hoping for the best in his continued development.
And the good news is, we’re continuing to see strong, steady progress with Stone’s development. Within the past couple of months, he has graduated from only using single words (“dogs” for hot dogs for example) or single phrases as an umbrella statement (“go home” for anytime he wanted to go in the car). He now uses short and appropriate sentences such as “May I go in the car beach please” or “May I have candy please” (a favorite for obvious reasons). It’s exciting to see him beginning to understand more about language and how to use it to help communicate. The progress sometimes seems slow – especially when compared to Ty – but at least there is progress, and for that I’m grateful.
There remains many challenges – as there are raising every child. Sometimes I feel bad for all that Stone has to endure with our efforts trying to help him. He now has ABA therapy 3 days a week for 2 hour each session – after a full day at school. He has 2 hours of speech therapy and additional Occupational Therapy. He takes a cocktail of vitamins and supplements every morning and evening although fortunately he has learned how to swallow pills, so its much easier for all of us to go through this routine now. I still feel bad when he asks to eat something that he can’t have – such as pasta with alfredo sauce. Its just not fair that there is so much food we have to exclude from him yet we’ve seen the results all too often when we’ve ventured off the diet and allowed him the occasional “treat.” Invariably this results in Stone waking up at 2 or 3 am – and either Renee or I have to get up with him. His system just can’t handle it. And we can’t handle many nights with only 3-4 hours sleep.
What I’m most grateful for is the bond and relationship Stone and I have developed. I never knew it was possible to have such a strong connection when communication is limited as it is with Stone. But the bond is there and its as solid as granite. Stone shatters the stereotype that kids on the Autism can’t/don’t show emotion or affection. He’s incredibly expressive – and affectionate. I cherish the mornings we spend together cuddling or wrestling in bed. I sense how much I mean to him – and I believe he knows and understands how much he means to me too.
And Stone has begun to build a stronger relationship with his twin brother Ty too – and this is hugely important. For so long Ty has felt almost like an only child so he’s now thrilled to have any type of interaction with Stone – and its increasing all the time. Renee and I love watching them when one is chasing the other around the house – or tackling/wrestling each other on the bed or couch. They’re acting like “real” brothers and that is very gratifying.
So while it could be easy to be cynical about the publicity that Autism Awareness Day and Month receive, at the end of the day I’m grateful for it all. I have no doubt that the awareness that has developed has helped make Stone’s life and journey just a little easier. And we’ll take any help we can get.