I’m at the playground with my four-year-old son. He’s chewing on his hand, drooling. A nearby mom says, sympathetically, “Are teeth coming in?” I say, “No, it’s his stim.” She does a double take, smiles kindly. I realize how lucky I am to live in a time and a place where a stranger understands that “stim” means he’s on the autism spectrum and his hand in his mouth calms him, helps him self-regulate and indicates whether he is happy or upset.
Despite periods of situational depression, I’m new to the world of disability. I didn’t know until recently that 22 per cent of all Canadians have disabilities. In fact, I’ve learned it is the largest minority group in Canada.
I’ve also learned that of the over 6.2 million Canadians who live with a disability, almost 30 per cent live in poverty. They are considered by the federal government to be a group that is at a greater risk of poverty. That is why the recent federal budget includes a proposal for a national Canadian Disability Benefit, and why it’s so important that it be enacted as promised.
Persons with disabilities have been promised economic relief before, by many different governments, only to be disappointed when the promises rang hollow. We can’t let that happen this time. A federal Canadian Disability Benefit will help persons with disabilities live lives of passion, purpose and participation. All Canadians will benefit as a result. The federal government must move on this promise swiftly, and not spend years on consultation only to let the idea fizzle.
Disability is the only minority group any one of us may join at any moment, and likely will at some point in our lives. Many of us will age into disability. My son’s ASD diagnosis came at the age of two.
At times, in public, I’m torn. I feel the need to apologize for or preempt my son’s seeming obliviousness to other children. I often let kids know that his high-pitched noises are how he communicates — he’s non-speaking. When he blows raspberries, he generally gets a whole group of imitators even though he won’t imitate them. He unknowingly blocks the whole staircase when kids are trying to climb up. In the past, I’ve been quick to jump in and move him aside. But I’m seeing now that kids negotiate their own way around obstacles — they just push past him gently. When he hogs the top of the slide and doesn’t move, they squeeze in beside him and slide down. He’s not bothered at all.
I’m still learning. How best can I support him? How much of a helicopter parent should I be?
I haven’t been using his Augmentative and Alternative Communication device as much as I ought to because he communicates so well with me. He takes me by the hand, leads me where he wants to go. He puts my shoes at the door when he wants a walk. His needs are very clear to me. Yet our silent, seamless communication won’t facilitate his communication with other people.
I need to help give him a voice, especially as he grows and his needs become more complex. Am I babying him too much or giving the guidance that every child needs?
I help him dress and work on toileting. He only eats soft foods because he has texture issues. Am I letting him do things at his own pace and in his own time, or am I not encouraging him enough? How do I figure out how best to raise him up while not taking anything away from him? How do I allow for his autonomy, intelligence and strength to shine for all world to see — not just for me?
I had him in my mid-40s: talk about advanced maternal age. What will happen when I’m gone? As I make my way through the complexities of disability parenting, there’s one thing I know for certain — every person with a disability deserves the right to live a full, robust and meaningful life.
This is why I’m helping fight for the Canadian Disability Benefit. I’m doing this by participating in a newly formed disability-led movement in Canada, Disability Without Poverty. We want to see a supplemental income, along the lines of the Child Care Benefit or the Guaranteed Income Supplement, designed specifically for people with disabilities, designed by persons with disabilities at the table.
Let’s make sure the Canadian Disability Benefit is a government promise that comes to pass and in a way that benefits those it promises to serve. It will mean that I, and the countless others who support people with disabilities, can rest easier knowing our loved ones will have the reliable financial supports they need, not just to live, but to thrive.