I recently read an interesting personal reflection by Kim Stagliano of the Huffington Post about raising her three children with severe autism. She was talking about going with the oldest of them to be made power of medical attorney for the young woman, and about the overwhelming realization that she'd likely always be a caregiver.
"Do you have a standby guardian you can lend us?" she writes, regarding her struggle to figure out who would take care of her girls should she and husband not be able to. "All it requires is 24/7/365 love, care, attention, physical presence, complete ability to make every decision and about 1,000 other responsibilities." It's a very difficult question to ask. I know from my work doing transition planning with families that many don't ask it because it's just to difficult to answer.
Kim Stagliano had some strong words for those that believe in autism acceptance, as opposed to autism cure. While she acknowledged that " if you do not want prevention, treatment or cure for yourself or your own child -- that is your right", she also talked about being made to feel like a bad parent for wanting those things for her children.
"Those who do not acknowledge and fight for change for the real struggle of families from coast to coast can kiss my polenta," she says.
With the last quote, at least.
Kim Stagliano and Families of Children with Autism - Overwhelmed and Undersupported
I've worked closely and over several years with a few families with children with autism like Kim Stagliano describes - autism severe enough that the child has difficulty performing activities of daily living independently, exhibits behaviours that makes him/herself and/or others unsafe, and that makes almost constant or constant supervision necessary. These aren't the clinical factors that determine whether autism is "severe" or "not severe", but they are the things that wear parents down, little by little, until I found myself saying things like:
"I'm more worried about you than your son right now. Let me get you a referral to a counselor."
"If you cry in the meeting, don't worry about it. You've been upset about this for a long time...that's why we're having the meeting, right?"
"I know that the last thing you need is to fill out another form, but this is the next good step to take."
"The only way to do this is plan as best as we can and then take things one day at a time. Are you at a place where you can handle that right now, or do we need to bring in some more resources?"
I marvel at the tenacity of parents of children with severe disabilities, who find the strength to keep facing the challenges that they do, every single day. Because in a world where opportunities and funding for adequate respite by well-trained providers continues to be slashed, supported community integration for people with disabilities through agencies becomes harder to come by, trained support in schools (and therefore opportunities for learning academic, life, and social skills) disappears as school budgets shrink, community health supports that allow people with disabilities to live independently are cut, and community residential living placements become fewer, it's little wonder that parents are feeling crushed by not only the responsibilities of caregiving, but the question of what their child will do when they are no longer around.
But this is where Kim Stagliano and I start to see things differently.
I'm uncomfortable with the idea that people with disabilities need a "cure" in general, which I guess puts me in the autism acceptance camp. I don't think that it healthy for parents to pretend to that there's no stress involved in caring for a child with severe autism, or that anyone should suggest minimizing any negative feelings that it may bring up. But kids with autism are kids first, and until there's a day when there is a cure and really something to argue about in terms of "Should I accept autism or should I accept a cure?", the answer seems obvious to me.
Bottom line, kids with disabilities are still kids, and they should be kids first, above all else. Our primary focus (as their parents, family members, educators, support people, etcetera) should be the same as it should be for any other kid: ensuring that they get what they need from their homes, schools, and communities to thrive and to become, to the greatest extent possible, citizens that contribute in positive ways to their communities and to society at large. It seems much more constructive, to me, to assist kids to get to this place by taking the resources that are available and tailoring them to meet an individual's particular strengths and weaknesses and gaps in supports, rather than spend a lot of time saying, "But things would be so different if only my kid didn't just have autism."
That Being Said
I don't know how many resources Kim Stagliano has access to.
Kim Stagliano sounds exhausted, and who wouldn't be? She's been in an incredibly tough, thankless job for eighteen years. If where she lives in anything like Ontario, any meagre funds that she'd received for vital respite or for enrolling the girls in community activities, or for even something as simple as hiring a housekeeper to come in for an hour a week to help her out have been slashed. Unless she's had the girls enrolled in a very progressive school, she's likely had to fight for her girl's rights over and over, and she's probably tired of it. When I worked as a Transition Planning Advisor, I'd have gone with a parent like Kim Stagliano to get a Power of Attorney signed, for moral support; we'd have hashed out some of these tough questions like "standby guardian" together.
Kim Stagliano's idea of helping families of children with autism appears to be putting money into finding cure, I'd rather see money go into putting supports in place that lessen the stress on families of people with autism and that assists people with autism to thrive in community settings.
But would I demonize Kim Stagliano for how she feels? No, no for a second. I always got to go home from my job from the end of the day; she's a parent 24 hours a day, 365 days a year. I can't truly know how she feels, and I don't have the right to judge her. I'm sorry that she's felt felt judged for her position on this issue.
Kim Stagliano's reflection: "Autism Sucks and Then We Die" http://www.huffingtonpost.com/kim-stagliano/autism-research_b_1926901.html