Mama and Dad

Soon after our son Ben was born, a geneticist gave us the news that our baby had a greater than 50 per cent chance of having a rare genetic disorder. After listening to a vague description of potential bone and development problems, and clinging to the stat that 25 per cent of these kids were intellectually 'normal,' my husband asked, through silent tears: "But will he still be able to run and jump and play with his friends?"

At the time, we didn't question that Ben would have friends.

We didn't know that being friendless was the norm for kids with physical and intellectual disabilities.

I really DON'T want to write this post.

I don't want to believe that my son will never be able to develop friends naturally because he can't speak, looks different, can’t keep up physically or intellectually with his peers and does things that aren't 'cool' for his age.

But in the last few weeks, the evidence outside our own personal experience has been mounting, and continues to slap me in the face.

It started with a British study -- aptly named Does Every Child Matter? Researchers followed children with disabilities and their families through interviews and observation for 32 months. One of the key findings was that parents face huge pressure to 'make their child normal' and when they aren't successful, the child and family are excluded -- from friendships, at school and in the community. The biggest barrier to participating in sports or community activities was not access or transportation, but attitudes. Children participated in segregated community programs, researchers found, because they had no other choice. At school, they were segregated because of the requirement to be 'able' and to develop typically, and because special-ed policies have placed the 'problem' of disability within the child, instead of within the disabling environment, the scientists said.

Then there was the Holland Bloorview research that showed teachers and students alike shut out kids with cerebral palsy in regular classes. "The kids act like I am invisible," one participant said. And it's not just the children. A teacher turns off a student's communication device, rendering the student silent. Another teacher refuses to allow a child to have a bathroom communication button -- so the child, toilet-trained, must wear diapers. The reason? The button would disturb other students.

And the final nail in the coffin? In Dr. Anne Snowdon's recent study of 166 families in three Canadian cities, more than half of children with physical and developmental disabilities have no friends or only one friend. Only 1 per cent spend an hour a day with a friend.

Can you imagine the outcry if any other population of Canadian children was found to be this isolated and alone?

Reporting on Snowdon's study, André Picard writes in The Globe and Mail: "In childhood, efforts are made, but by the time kids hit age 10 or so, when cliques and social circles form outside of parental control, ostracization and isolation is near complete."

According to a U.S. National Institutes of Health funded study in Ontario, the teen years are particularly difficult. While peers become involved in a growing array of activities that widens their social network, teens with disabilities tend to stick with the same activities, often with family members.

Ben wants friends. I used to love watching him stand as a small child at the window, signing, "Friends, where?" as we waited for the birthday party guests to arrive. When he was younger, he had some authentic friends. In particular, students rose to the occasion at an alternative elementary school he attended that had a philosophy of promoting diversity. There was Adaku, a girl who was fascinated with sign language, came for play dates and regularly spent time with Ben. She read his poem about a gorilla at a school function.

There was Eli (back photo above). One day another student questioned Eli about his friendship with Ben, and Eli responded by saying: "Ben? He's one of my best friends" and put his arm around Ben's shoulders.

But things got trickier as the kids moved into puberty: they were now twice the size of Ben, who has a form of dwarfism, we still hadn't found a reliable way for Ben to communicate, and he couldn't keep up intellectually or socially. He had one good year at the Metro School for the Deaf -- a segregated program within a regular elementary school. The kids were fond of him, he occasionally had students over, and he liked the kids who rode his bus.

Friendships didn't materialize at his segregated high school 40 minutes away: all the students were bussed in and lived in different parts of the city. If you invited kids to a party, parents never RSVP'd and often the kids didn't show. Ben's school reports indicated that he had no contact with the other students -- which was hard for me to believe, because he is sociable.

I have a meeting at Ben's mainstream school in a week and I want to know whether he's made any progress socially there. He doesn't get phone calls or texts with constant requests to go out like the rest of my children. His weekends are free. He still doesn't have a way to clearly communicate with people, which seems to be the basis of all friendship. He does have guts. He was the only student in the deaf and hard of hearing program who went to the school's Halloween dance (with his worker Marjorie). Apparently some girls asked him to dance. When we did his life plan, I wrote out about a dozen possible dreams for the future, and he immediately scanned through them and pointed to "have friends."

I read the comments posted on media stories about research showing exclusion of children with disabilities. Many have disturbing, although predictable, themes: You can't 'force' a child to be friends with a disabled child; Parents should have aborted their kids so they didn't have to experience this misery; Why would a child invest time in a disabled child when he or she could get so much more from a typical child?; Any relationship between a disabled and typical child involves charity on the part of the 'regular' one.

If the parents and brothers and sisters of our children have meaningful relationships with them -- why can't anyone else?

No Ordinary Boy author Jennifer Johannesen and I were discussing this the other day. She pointed out that although workers had authentic relationships with her son Owen, she had to pay them to spend the time with Owen -- time that was necessary to get to know the boy inside.

And perhaps that is the bottom line. It takes more time than any teenager is willing to spend to get to know our kids, who are often locked in bodies that limit self-expression.

I didn't want to write this article. But when I came in today, I read this blog entry by Ben's worker Marjorie: 'It's fine, I don't care.' It's about a Super Bowl party one of her adult clients organized. Most of the friends he invited from college didn't come. "It's fine, I don't care," he said.

Marjorie writes: "I once took a small conference with David Hingsburger, and he said something I will never forget: 'You will always be more important in the life of someone with a disability than they are in yours.'"

I'm assuming Hingsburger was referring to how few friends disabled youth have compared to their peers -- which would mean that any friendship is more valued by them.

But it really bothered me, reading that quote. It suggests that the person with disabilities always has less to bring to the relationship. Which is wrong.

The whole topic of youth with disabilities and social isolation makes my blood boil.

I'm back from a week's vacation and wanted to let you know about this contest for children and youth ages 5-21 to be part of a media awareness campaign called "It's Normal to be Different."

The International Association for Life Quality is looking for songs, stories or poems that break through stereotypes about people with disabilities.

Submissions can be about any type of disability – developmental, physical, learning – and can be written by a youth with a disability or without (e.g. a sibling or friend).

They're open to Canadian entries.

I want to get a copy of Karl Taro Greenfeld’s Boy Alone – a memoir about growing up with his brother Noah, who had severe autism, during the 1960s.

But I’m also hesitant. It’s obvious from reviews that it’s a frank and painful account of how it felt to be the typical sibling in a family that revolved around one child’s challenging behaviours and inability to communicate.

“I can feel the room tilting toward you whenever you walk in,” he writes of Noah, “all of the attention and parental love drains into you, never to come back out.”

I know there are times my kids feel that way about my son Ben, the oldest at 15, but the youngest of my four developmentally and in stature. Ben has a rare genetic condition. He doesn’t speak, is weak and has pain in his joints, has hearing loss and uses sign language. He’s the size of a five-year-old.

He can’t carry the groceries up the 30 stairs to our house or do other things we expect of his siblings. He wears hearing aids but struggles to hear with background noise, so I’m constantly telling the other kids to be quiet so Ben can understand me. Or to hold their thought while I try to decipher what Ben is signing to me. Or to walk the dog, even though it’s Ben’s dog, but he can’t walk him. Or to pull Ben in the wagon, because his knees hurt.

“But my knees hurt too Mom!”

“Not like Ben’s do I’m afraid.”

Sometimes they’ll say things like: “He gets to do whatever he wants!” And it’s hard to explain that in reality, there are so many things they can do that he can’t: from riding a bike, to swimming and playing sports, or calling a friend on the phone. To even just having a friend. Ben doesn’t have any friends.

It’s hard for kids to understand that perhaps you go easier on their sibling because that child is already up against so much. Even though you know rationally that all kids – with or without disabilities – need responsibility and limits and expectations.

I often feel like my other kids have a depth and sensitivity to them precisely because Ben is their brother.

But I also worry about them resenting him and how our family has been defined by his needs. As Karl writes in Boy Alone in reference to his brother Noah: “I am learning that I can never compete with you…I will lose every race for our parents’ time and attention.”

Two brothers, battling autism

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