This is Bohdan he is 5. He loves helping his little brother and making people laugh. He is Autistic.
Bohdan was diagnosed with severe Autism just after his 4th Birthday. He is not completely verbal and may also have some cognitive delays. We paid $1500 to have Bohdan privately diagnosed as the wait list for diagnosis was over 18 months long at the time. The day he was diagnosed, I contacted Child and Community Resources (CCR) and put him on the wait list for services. Almost 2 years later, Bohdan still has not come up on the wait list and the changes to the Ontario Autism program have all but guaranteed he will never get the chance to have the therapies he needs.
Bohdan not being completely verbal means that when he does speak, not everyone understands what he is saying. That includes teachers, friends and family members who see him most often. This also means that typical social interaction is very difficult for Bohdan. He wants to bring people into his world but doesn’t know how to get others to understand what he wants to share with them. He loves to play tag, build with leggos, explore outside, do arts and crafts, watch shows on his tablet and mimic them and laugh along. However, getting someone else to enjoy these activities with him in a way that children his own age understand is difficult and that’s heart breaking. Watching him play alone while typical children his age are interacting together, setting up sleep overs and making plans to hang out on the weekend; there goes another piece of my heart. If he is invited to a party or to play with friends, will they try to involve him? Will they understand if he needs something or is in pain? Will he melt down or become over stimulated because there is too much going on around him?
For his severe-Autism diagnosis, Bohdan requires 25-30 hours minimum of intensive IBI and then ABA therapies a week as well as speech therapy. The ABA alone is $55 an hour. That’s just over $80,000 a year. We as a family simply cannot afford what is necessary for Bohdan to have a best-case outcome in life. These therapies will help him with structure, social interactions, cognitive abilities, verbal skills, the list goes on and on. He is currently in an intensive supports program classroom in school, but school is not a replacement for therapies and therapies not a replacement for the academic learning and socialization he gets from school.
The therapies Bohdan needs will change his life. I have seen what only a year of IBI therapy has done for other children; those who were still in diapers are now toileted, non-verbal children now able to express their wants and needs, kids being able to brush their own teeth and hair and finally being able to give their parents a hug and say, “I love you”. Let me tell you, the first time Bohdan repeated back to me that he loved me, I burst into tears. At the time, I didn’t know if he would ever say it again. But I had hope, that Bohdan would be able to receive the therapies he needed to make “I love you” something he could express on his own. Without these therapies my son’s future is very unclear.
Bohdan turns 6 on May 26th and at that time the maximum allowable paid to us for direct services is up to $5000 a year. That covers less than a month of what my son needs to thrive. What has been proposed is not based on needs, it is based on housel income and age. This is devastating! How do I look my child in the eye and tell him that I can’t provide him with what he needs to succeed in life? How does any parent?
Help me educate. Help me fight. Help me make decision makers understand that my boy deserves a high quality of life!