Mama and Dad

Last week, Karl Taro Greenfeld wrote a compelling op-ed piece in the New York Times about how services for adults with severe autism evaporate the day they graduate from high school: Growing Old With Autism.

Greenfeld is the author of the recently-released memoir Boy Alone, a book about growing up with his brother Noah, who has autism.

“He graduated from his special needs school on a bright, sunny Orange County day,” he writes in the New York Times piece. “…he was beaming, handsome in his bright blue cap and gown.

“But for the profoundly autistic, graduation is perhaps the saddest day in their lives.”

Like many adults with developmental disabilities and odd behaviour, Noah couldn’t get a job. His family tried unsuccessfully to find a day program where he could be productive and meet others. He wasn’t “high functioning” enough. The family couldn’t afford to pay for ongoing behavioural therapy. Despite his family’s best efforts, Noah regressed and became increasingly destructive to himself and others.

Hundreds of millions of dollars a year is pumped into autism research in the U.S., Greenfeld notes, but it’s all directed at children.

Adults aren’t on the radar, and it’s reflected in the lack of services and programs to support them.

I have six years to try to cobble together a worthy adult life for my son Ben, who’s now 15 and can stay in his special-needs high school till he’s 21. He doesn’t have autism, but he does have physical and developmental disabilities.

While we’ve made a lot of progress with programs like Bloorview’s Growing Up Ready – which aims to prepare youth with disabilities for independence in adulthood – there will always be adults with developmental or multiple disabilities like Ben who require lifelong supports.

My son needs constant supervision and someone who understands sign language to interpret for him. Where will he go during the day when he leaves high school? If my husband and I continue to work, who will support him during the day? How will we pay them? How will we find something meaningful for Ben to do?

I used to come up with wild ideas about how we’d create a business to employ Ben.

Two years ago we bought Ben a Bull Dog puppy. Without really giving thought to the practicalities, I started to envision Ben as a future Bull Dog breeder. We have a farm to retire to, breeders work online, and Ben loves computers.

However, once I gave this some serious thought, it became apparent that Ben couldn’t manage the physical side of caring for dogs – particularly when they’re puppies. He has joint pain and fatigues easily. He’d enjoy visiting with the dogs, but he wouldn’t enjoy cleaning up after them and feeding them, and he wouldn’t have the strength to train them (he struggles to walk his current dog).

Now that Ben’s in Grade 9, every time we receive a report card, we also receive a standard form that lists all of the courses required for an Ontario high school certificate. And beside each of these courses are typed big fat zeros – as if we need constant reminders that our child won’t graduate from high school and, as a result, won’t amount to anything valued in this society.

I want for Ben what I want for all of my children: the opportunity of a future filled with meaning, learning, joy and friendship. But when I read about what happened to Greenfeld’s brother Noah, I fear for the future and what it holds for Ben and our family.

New York Times health guide on autism
http://health.nytimes.com/health/guides/disease/autism/overview.html

Families of children with disabilities in the UK feel shut out of society due to negative attitudes and a shortage of services, according to a survey published this month by the charity Contact A Family.

Nearly 70 per cent of 615 families said understanding and acceptance of disability in their community is poor or unsatisfactory.

This is significant because there’s a general public perception that we’ve come a long way in improving attitudes toward children with disabilities, yet the reality for these parents is that they often feel their child and family is misunderstood and left out.

Other findings from the study:

• Over 60 per cent of parents say they don’t feel listened to by professionals and that their role is not valued by society.

• Almost half said they lacked respite care that would give them a short break, and childcare that would enable them to work.

• The survey references a British study showing that it costs three times more to raise a child with a disability.

Does your child and family feel understood and included in most parts of everyday life? Or does your child and family feel stigmatized by negative attitudes or ignorance? What can we do to improve understanding and acceptance of children with disabilities and their families?

Majority of families with disabled children face prejudice, says survey