Our son Blake was diagnosed with ASD at the age of 3 1/2. He is a funny loving, energetic little boy. He loves tickles, bike rides, swings, jumping and balls. He can do handstands! He is super agile and is often found climbing on top of things that he shouldn’t. Describing him like this sounds like any other little boy, but unfortunately Blake’s life is complicated by his severe language disability- not only does he find it difficult to use words, but he is unable to understand a majority of what is being said to him. He can label the world around him, as labels are fairly consistent, but he is unable to conceptualize. He knows who “Santa” is, but has no idea that Santa brings presents on Christmas to good girls and boys. He knows what a birthday is, as evidenced by balloons, birthday cake and a birthday song, but he doesn’t understand what having a birthday means. When we pick Blake up from therapy, we say “Hi Blake” and he responds to us “Hi Blake”. He does not understand conversation. This significant language disability combined with his athleticism is a very dangerous combination. We jokingly call Blake our Autistic Ninja, but it is no joke when he runs into the middle of the street to jump in a puddle. It was no joke when I caught him only by the collar of his jacket as he was about to jump into the Thames River last spring. It is no joke when he runs away from us at top speed, covering his ears and laughing. As Blake gets older, he gets faster. I fear that one day I won’t catch him on time...
Blake was on the wait list for Autism Services for two years. In this two year wait, we sent him to speech therapy, first through Tyke Talk, and once he aged out of that, privately. We put him in daycare two mornings per week to encourage socialization. He received OT services at daycare to help manage his constant need for heavy motor activity. Then, before we knew it, with tears in our eyes, we sent him to Kindergarten. Luckily Blake enjoyed kindergarten and we were so fortunate to have a fantastic team working with us at Sir Issac Brock PS. The ultimate goal of everyone on our team: to keep Blake safe. He had an Educational Assistant assigned to him in the classroom, and a Bus Monitor to see him safely to and from school.
This fall, during the beginning of Senior Kindergarten, Blake was finally able to begin Intensive ABA therapy through Thames Valley Children Centre. We chose the Direct Service Model, because we really wanted Blake in a classroom type setting. They started by assessing and collecting data on Blake to determine what/where his skill levels were. The ultimate goal of this intensive therapy is for Blake to have the skills of an average four year old. In many areas, especially communication related, he only had the skills of an 18 month old. Our behavior plan includes goals around safety, communication, and toilet training. We have started to notice progress with Blake. He is using more words to express his needs and even more importantly understanding more of what we say to him. We are cheering because our 5 1/2 year old understands when we ask him to put his laundry in the basket! Or to “give” us something that he has in his hands. It is certainly the little things in life that are taken for granted..
On February 6th, when the government announced the changes to the OAP, we were in shock. I kept thinking, there must be a loop hole. Blake just started therapy! He already waited! Maybe there is something we are missing! But alas, after urgently meeting with the Coordinator of Blake’s program two days later, it was confirmed that indeed Blake would no longer be offered funded therapy as of May 5th 2019, the completion of his six month behavior plan. Blake is turning 6 on April 15th, and will only qualify for $5000 annually to pay for therapy. That leaves our family on the hook for approximately $75,000 per year. Plus we are already paying several thousand for private speech therapy.
Unexpectedly last week, the enhancements to the OAP have offered Blake a six month extension. He will be able to continue his intensive therapy until Nov 5th. While this allows us to take a breath, it still does not cover the anticipated 18 months of therapy we were told to expect, or the transition back to school. Our son has significant needs because of his severe language disability, and he deserves the time and funding to deal with this need appropriately. He already waited, now it should be his turn. He should be allowed to finish what is clinically recommended is best for his development. If Blake can’t learn how to understand and speak language, how will he be able to succeed in the classroom, or in life as an adult?. We need to help my son today, so that he can help contribute to society in the future, and have the most beautiful, meaningful and fulfilling life possible. The same that any parent would wish for any child of their own!