Ask any parent of a child with ASD and one of their biggest fears is the future. For our family, we have about 11 more years before our son is an adult. He's considered "high functioning", so my fears are more about his mental health as he navigates the social scene with his friends. I already see things that make me want to never let my son out of the house.
- The kid that told my son he wanted to kill him last year.
- The kid that mocks my son's blissful joy when I walk in to pick him up.
- The kid that dismisses him because he's different.
- The kid that will find any excuse to correct him just to best him.
Right now, the occasional mean kid and rare bully don't phase him nearly as much as they could. He doesn't see the ugly intent in their actions. His teachers have worked hard to give him help with a compassionate perspective at the same time that they fiercely defend and protect him.
He wants desperately to be a friend to kids that don't understand him. Being a good friend to others is so important to him that he can't fathom why anyone would refuse to be friends with him. He has an intense desire to show how good a friend he can be.
His heart is so pure and beautiful it humbles me. I suspect there's no avoiding him learning the truth about the world around him, but I hope with every fibre of my being that he never loses sight of the good.
But that fear about his future doesn't leave.
Autism is a funny thing - and I don't mean funny haha. Developmental disorders mean that delays start very young, but just because therapy can help children progress doesn't mean they won't experience regression or delays in the future.
I often get well-meaning comments that Brandon doesn't look or act autistic. There are many, many times that is true. He's smart and perceptive and wicked funny when he starts using phrases he's learned from YouTube. He's also in a great place right now where he's settled into himself and his world. He's gained so much confidence. That makes a huge difference.
It wouldn't take much to pull the rug out from under his feet, though. Maybe it's increased expectations at school. Perhaps it's a looming strike that will upset his routine (please, please don't let this one happen, Government of Ontario). Or perhaps just the change in seasons.
I have no idea what to expect in 10 years. 20 years. These days Brandon talks about becoming a video game developer. He's already got big plans for remaking games that should have been good but weren't due to glitches. I hope to see his name in the credits one day.
But what happens if that career - or any career - becomes unrealistic? What happens to him if he can work, but his needs keep him from having stable, adequate employment?
Hopefully, Matt and I will be around for a long, long time to support him no matter what happens.
But what if we aren't? We have no idea what will happen to us tonight, tomorrow, or a year from now. Much less 20 years from now when we're both starting to think about retirement.
Last week, Canada elected a new Prime Minister. We watched as the Conservative government that has been in office for 10 years went from majority to opposition status. Next week, the new Liberal majority government will take office.
But I don't want to talk politics - I never want to talk politics online. I want to talk about hope.
My hope is that the Liberals will follow through with their commitments to pass a National Disabilities Act. I hope we see more talk and a lot more action on a national autism strategy. I'm thankful for voices like Senator Jim Munson's, because he gets it and he's working hard to help others understand too.
My hope is that the governments at Provincial and Federal levels will start establishing policies and practices that promote early identification, early intervention in the form of various therapies, and lifelong support.
Right now the focus is almost entirely on young children with autism. My son aged out of most publicly funded therapy (except ABA) shortly after he was diagnosed with autism. We paid out of pocket for therapy, as many, many families of children with autism do in Ontario.
Families take extreme action when they need to get help for their kids.
- They take out a second mortgage.
- They sell their house.
- They sell their car.
- They start crowdfunding campaigns.
- They open special needs schools.
My hope is that I will see the day when families don't have to do this anymore to provide the care their children need. But when your child needs $65,000/year therapy, you do whatever you have to do even when none of it is covered by publicly funded healthcare.
My hope is that children, adults, and seniors with autism, or any other developmental disorder, will finally be able to access resources and support and therapists that meet their needs.
In 2018, Ontario will be going to the polls to determine the Provincial government that will move things forward with autism support services provincially. (We'll see whether any change happens between now and 2018.)
My hope is that whatever government that takes office will finally work to affect real and necessary change in how services are delivered and stop expecting parents to foot the enormous bills that come with helping a child who has autism.
If my hope is misplaced, I dread the strength that fear will gain for every family that needs hope to prevail.