Our 5 year old sings us songs. They are made up of more words than we ever hear him string together in speech. He does not tell stories, he does not give long explanations and answers to questions…yet. He is a little man with Autism Spectrum Disorder who along with other challenges has difficulty getting all the words and thoughts out of his beautiful mind.
When Scott was around 20 months old, I knew he didn’t have his 20 words yet. It was a benchmark that he was supposed to have surpassed by around 18 months. “Not a problem,” I thought. “I’ll just work with him a little more closely.” At his age, he did have some words. He could name all the trains from Thomas and His Friends. He could name everyone in our family. Was he answering questions? No. Were we having conversations? No, not really. But I still wasn’t concerned. He was a such a quiet and pleasant little baby. He was so adaptable and happy. If the other 3 siblings were being loud in one room, he played contently ~ not with them…but beside them. At bedtime my husband and I thought it was the cutest thing that he would pretend to be Sir Topham Hat. He would sit in his bed and recite lines from the TV show. I couldn’t even have known then that these were symptoms of ASD.
One night about 2 years ago, my husband was reading his favourite Thomas book to him at bed time and I noticed that Scott was no longer naming all the trains as he used to do. That’s when we started to realize that not only was his vocabulary not developing or improving, he was losing it. What’s more, was ~ and still is ~ the pain of seeing other kids his age (and sometimes younger) make progress while our son was not. We felt helpless. We had the privilege of having him diagnosed privately and he immediately began ABA therapy. We chose to exhaust virtually all of our financial resources to pay out of pocket for his behaviour therapy. We were able to finance less than half of the amount of therapy that was recommended by his paediatric psychologist with the plan that financial relief would come once his name came to the top of the Ontario Autism Program list. We waited, and it has not been easy - but knew that our son would eventually get the help that he needs. Under the new plan of the PC government, our son will never even come close to receiving funding for the quality and comprehensive therapy where he is thriving. And because the new system is based on age and income testing, his Childhood Budget will only cover a small fraction of his life-changing therapy and continuing to pay out-of-pocket for therapy is not sustainable. He is only 5 years old with a whole lifetime ahead of him.
Therapy has been invaluable. It is his education. It is how he develops his skills. It is worth the cost. He (and other kids with ASD) are worth the investment. At 5 years old, his verbal communication skills are progressing so well thanks to ABA/IBI therapy. Our exchanges with him are short. And although he would much prefer to do everything himself, we coach him to ask for everything verbally. Still, I long for the day that he might ask me a question aside from, “Where’s Daddy?” ~ his favourite human on the planet. Even ask a question as simple as, “How was your day?” or tell me how he’s feeling. We are not giving up on this dream or on his future. The new plan is not a plan to wait for. It’s not too late. We are pleading with the government to not seek to balance the budget on the backs of vulnerable children. We urge this government to consult in meaningful conversations with professionals, experts, and parents, and to LISTEN… to #pausetheplan…to fix the OAP so that our children grow up to be independent and productive members of society.