Mama and Dad

Last week I shared a new comment written on our most popular post The Invisible Mom by Sue Robins. The Invisible Mom is about how mothers of kids with disabilities can face the same social exclusion their kids face. Julie Drurie, mom to Kate, 7, who has a rare mitochondrial disease and took the selfie above, wrote a thoughtful response on her blog Searching For Solid Footing. We've reprinted it below. She made me think about how my perception of my child's exclusion may differ from my child's perception. Interested to hear your thoughts. Louise

'I do feel sad sometimes, but Kate isn't'
By Julie Drury

The first time I read The Invisible Mom I didn’t think that was me. I understood it and felt strong empathy for Aaron’s mom, but I didn’t think I felt the same pain and angst of exclusion as she.

But then I started considering how Kate is ‘included’ and ‘excluded,’ deliberately or not. I reflected on the moments where her differences stand out so starkly and where I hustle to make excuses for her…

…“she can’t hear you.”

“yes, she’s 7…but she’s more like a 3-4-5 year old.”

“she is signing or saying this that or the other thing.”

“well, she could come to the party…but maybe I should come too…to help…and she’ll probably have to leave early.”

She’s the kid who leaves early from school, is often sick, wears the funny helmet, has a tube in her nose, doesn’t speak, sometimes hits the other kids, is often in her wheelchair stroller because of fatigue, runs away and won’t come back, doesn’t understand when you ask what her favourite colour is (but she can tell you her name and how old she is!!). Some (few) make an effort to include Kate, but playdates, birthday-party invites and get-togethers with the girls are not really part of her life, sadly.

She loses her peer group annually as others grow and mature and learn and she is left behind. Her reality is that adults are her friends—and the few children whose parents facilitate them staying engaged with Kate.

Do I feel left out? Sometimes, yes.

Am I sad? Yes, I grieve ‘loss.’

More importantly, does Kate feel left out? No. Is she sad? Nope. She has her friends at school that will change year to year, but that she values nonetheless. She has her friends at Rogers House (Myah, Moon Pie, Buffa, Mat-teww), and her adult friends (Christine, Kat, Erin, Kara, Adrienne, Vanessa, Steffi, Tall Steve, and more) that she loves. She is developing her own friendships and through those connections, I am finding my peer group of moms and friends as well. A different peer group than what you would expect, but a very valuable one.

I don’t think I am an invisible mom. I think people see me. If they don’t, I usually make them see me and Kate.

I wish for so many things for her. I wish for playdates and friends and movies and outings and independence.

I do feel sad sometimes. But Kate isn’t. Not yet. For now she is happy. Like Aaron’s mom I hope she never has to understand or become aware of the pain of invisibility.

I want to share a comment written last week on our most popular post.

The Invisible Mom, written by Sue Robins, has had almost 22,000 views and generated 80 comments.

It's about how mothers of kids with disabilities can face the same social exclusion their kids face: "In the foyer of every elementary school there's a gaggle of moms standing in a tight circle, waiting to pick up their kids," Sue writes. "In the 10 years I've parented my son Aaron, I’ve never cracked that circle. I've walked past that circle hundreds of times and nobody has ever shifted—ever so slightly—to give me room to join in."

And not only do these 'typical' parents ostracize parents like Sue, she writes, but they seem to sanction 'leaving the kid with disability out' when it comes to their child's birthdays and other get-togethers.

Sue wrote her piece over a year ago, yet listen to how it hit this parent.

Do parents of kids without disabilities have any inkling that this is reality for many of our kids? If they did, would they care? Louise 

Thanks for writing this. It has been in my heart for years. Yes, I know too well the gaggle of moms and dads. Like a gauntlet to run every day.

Every year I have hosted a birthday party for my child, every year something fantastic: a bouncy castle, paid entertainment, tons of loot. Every year the kids came, sometimes even ones not invited. But the reciprocal invitations never arrived. This year, he turned 12, and only one child showed up, despite the party being held somewhere all kids love. And this one kid probably came because I pay him to do yard work. I guess at 12 they are all too cool to go to the "retarded" kid's party. My sweet loving boy spent his birthday in tears. How do you explain it to a child? I don't know.

By Louise Kinross

On Monday I got home just as D’Arcy and Ben were walking up the 26 steps to our house.

Ben, who had just got off his bus, was wearing his black and brown Tim Horton’s uniform—including a button-down shirt and visor—and D’Arcy was waiting for him as he climbed each stair. They got to the landing and Ben sped up with his characteristically lopsided gait, the result of a surgery that left one leg shorter than the other.

I was flooded with happiness.

I knew how lucky we were that Ben had two co-op placements in his last year of high school, and the human and transportation supports to make them happen.

But the moment was bittersweet. I quickly reminded myself that these supports will evaporate next year. When Ben leaves high school, he'll experience what families of children with significant disabilities refer to as "falling off the cliff."

And the findings of a large, longitudinal Irish study released last week paint a grim picture for people with intellectual disability decades later, in their middle to old age.

The research—the first in the world—compares the physical and mental health of 753 people with intellectual disability over the age of 40 with the general population over a three year period.

I was particularly interested in the findings on relationships in the study, which is called the Intellectual Disability Supplement to The Irish Longitudinal Study on Aging (you can download it here).

In contrast with the typical aging population, researchers found older people with intellectual disability are generally alone—single, without children, and living in a different area than other family, which makes seeing family difficult.

Three-quarters say paid staff are their most important “social partners”—read “friends.” Just over half have friends outside their home. For respondents with severe intellectual disability, more than two-thirds have no contact with family. Researchers found lack of friends and reliance on staff was just as problematic for older people living in community group homes as it was for those in larger, more traditional institutions. Respondents said they were most likely to confide in paid staff, well ahead of siblings and friends.

“Our findings show that movement to the community does not necessarily equate with community integration,” says principal investigator Mary McCarron of Trinity College Dublin, echoing a theme in this earlier BLOOM post. “Unless the community is truly organized and resourced to support aging people with intellectual disability…their experience may instead be one of social isolation, loneliness and new forms of institutionalization,” Professor McCarron said.

Almost two-thirds of older people with intellectual disability in the Irish study have trouble getting into the community, or don’t go out at all—with “need someone’s assistance” as the main reason they're stuck inside.

Researchers note that “living in the community” for older people with intellectual disability bears little resemblance to life in the same neighbourhood for the general aging population.

While older people with intellectual disabilities had significantly lower rates of high blood pressure and heart attack than the regular population, a majority were overweight, engaged in little physical activity and had osteoporosis.

Compared to a 33 per cent employment rate for the general aging population, only 6.5 per cent of older people with intellectual disability were employed at the three-year mark of the study. About 80 per cent attended a day program.

At the beginning of the study, 32 per cent reported never having attended school. At the three-year mark, over 80 per cent said they had trouble reading, writing, doing simple math and using money. More than 60 per cent could not read their own name.

The researchers note that for the first time in history, people with intellectual disability are growing old in considerable numbers.

I'm grateful that such a large, rigorous study is shining a light on this marginalized population.

But its results cast a shadow on my hopes for Ben's future.

Watching Ben climb the stairs with his dad on Monday I was happy that he had a co-op placement at Tim Horton’s, that he was wearing the standard button-down shirt despite his sensory aversion, and that son and dad were so pleased to see each other.

Ben prefers it when his dad waits at the end of the bus ride. Sometimes when I pick him up he’ll pretend to snap his fingers in a gesture of “darn.”

“I know,” I’ll say. “I’m your second favourite.”

I recognize we’re incredibly lucky that we have one more year for Ben in the school system, and that he is doing co-op five days a week: two days at Tim Horton’s and three days at Variety Village, the adapted gym. He has an assistant who goes with him. This allows D’Arcy and I to work regular hours.  

But at 21 our children lose the learning stimulation, routine and social connections of school, with nothing to replace them. Hiring workers to support your adult child can be extremely expensive. And you may be starting at ground zero to organize activities that are meaningful for your child.

We have a small group of workers, family and friends who met last weekend as a follow-up to a life-plan day we did with Ben, where we looked at his goals for the future and how we can support him. I hope we can come up with a mix of activities for him when he graduates that may include part-time work and a day program. People like my son deserve a better future.

I'm not convinced that the Irish study will result in richer lives for the seniors studied. I don't think the average person is concerned with, or willing to invest in, the happiness of people with disabilities. How can we change that?

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.

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