An uncertain future
I’m 49 and have five years of freedom left. My 16-year-old is in high school and she’s entitled to stay until 21 — one of the perks of having autism and being in a life skills class. Worst-case scenario: When her school days are done, my daughter could be home all day with me. Hardly a way for either one of us to have a life.
I’m not the only one dreading the future. One in five American families has a child with special needs. One in 165 kids in Canada is diagnosed with an autism spectrum disorder. And while the government finally understands that early support and treatment are key, officials seem to forget that these kids grow up.
My rapidly sprouting teen craves her own space. Sometimes she refuses yet another “life skills building” outing like grocery shopping, saying, “I want to chill, Mom.” She retreats to the basement to watch TV (Crash Test Mommy and Birth Stories are current faves) and to cruise on Facebook. Lately when I kiss Talia goodnight, she says the eeriest thing: “Mom, you’re the only one who can protect a child.” While I suspect she’s echoing a line from a diaper commercial, it haunts me still.
A bleak outlook
I call a case manager (I’ve become a case!) asking for the blunt truth about our future prospects. Two words sum it up: waiting lists. Residential spots don’t come up often. I hear about a single mom whose son finished school and awaits a day program. To keep her job, she’s hired a neighbour to check on her son a few times a day. This is my worst nightmare.
I email my disability networks to unearth women in the adult parenting trenches. Responses flood in. It’s rare for a “special-needs mom” to be asked about her own quality of life. Fifty-nine-year-old Lyn Kyneston of Pickering, Ont., says, “We had expected our son [28 with autism] would be on his own with supports. Individual funding is not available, so he remains with us — probably until one of us dies or we’re in crisis. We have limited time to ourselves and never any time away. We worry constantly about what will happen to him when we’re gone.”
Joanna Bullard of Windsor, Ont., is a 60-year-old single mom to a 30-year-old autistic son. She warns, “When the kids ‘graduate,’ there is nothing but endless applications for funding. I can’t afford to retire. I have no savings. I’ll retire when I drop dead.”
Not the hope I was looking for. Ironically, as I research this story, my father and my mother-in-law both fall seriously ill. For weeks I battle highway traffic en route to hospitals in two different cities, pickle my hands in visitor sanitizer and jot down medical updates. I’m the poster woman for the sandwich generation of caregivers. I need ideas for the future so I can cope with today. I need a mentor.
