Yesterday my hubby sent me an e-mail with a link to this story about a 13-year-old Peterborough, Ont. boy with Asperger's. He invited 15 students to his birthday party and not one RSVP'd.
"I read this and started crying," he wrote, thinking about our son. We had a similar situation a few years ago when our son invited two "friends" from school to a celebration that involved going to see The Hunger Games and they didn't show. I remember sitting at our dining room table cutting cake with my other kids when my son asked "where" his friends were and "why" they weren't there. "Something must have come up," I said. We went as a family to the movie.
People who don't have kids with significant disabilities don't have a clue what this is like. It's completely outside their realm of experience. I don't think I would have believed the degree of isolation that can happen, especially in high school and early adulthood, to youth with more significant disabilities, or those that make social relationships challenging.
In 2012, Dr. Anne Snowdon's study of 166 families in three Canadian cities found that 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. Is that possible? Growing up I spent hours with friends everyday after school.
Last year Sarah Keenan, life skills coach at Holland Bloorview, spoke about how research shows friendship is associated with life satisfaction and good mental health in the general population. On the other hand, loneliness negatively impacts the immune system and heart health.
Children with disabilities tend to have fewer friends and smaller social networks than their peers, Sarah said, after reviewing 56 studies. She referenced an American study of 11,000 teens that found that “over 50 per cent of students with autism had no contact with friends outside school and were never invited to spend time with friends.”
Studies find that typical youth are more open to having a friend who has a physical disability than one with an intellectual disability, she said. However, interactions with youth with disabilities in general are often superficial on the part of typical youth.
On the weekend people were touched by the outpouring of social media support for the Peterborough student. After his mother posted about his friends giving him the cold shoulder, tweets poured in from sports teams, actors, singers and politicians, all sending him birthday greetings. And strangers and media came to his party at a bowling alley that night.
That's great, and I'm sure it was a huge boost to this boy and his family. But how will this translate into changes in the boy's daily life? What about the 15 students he wanted to come to his party, who didn't even respond? How will their ideas or behaviour change? This was a feel-good one-off—one tweet sent, one event attended. Inclusion for youth with disabilities is so much more complicated than that.
This morning I heard from a parent in Vancouver who sent me a link to a video about her son, with autism, and Club G—an elementary school's efforts to ensure he was included. Make sure you watch it. I was crying tears of joy by the end. This is the thinking behind Club G.
But then I thought about it and my pessimism returned. This is elementary school. Our own experience has been that authentic friendship is possible during those early years, when kids are receptive and a school makes disability awareness and inclusion a priority.
It's in the high school years that things break down—when the focus becomes much more academic, schools are less invested in character development, education for students with disabilities often becomes segregated, and teens themselves cringe to be seen as different.
According to a U.S. National Institutes Health Funded Study led by Holland Bloorview researcher Gillian King, the teen years are particularly difficult for youth with disabilities. 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.
This is a deep, difficult cultural problem, not one that can be solved on social media.
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10 comments:
In my experience, there's often a whole lot more to "its tragic that this kid with disabilities threw a birthday party and no one came" -- particularly when kids are get to about age 10/11 and up, ie when they start arranging their own playdates (vs parent-arranged play dates).
There are SO many factors that come into play, including but by no means limited to:
1. A birthday party invitation is not a subpoena. It is perfectly acceptable and not the least bit rude for a kid to decline.
2. Whether the 13 yo was actually friends/more-than-casually-acquainted-with the 15 kids he invited to his party. it's not unreasonable for kids to decline an invite from, say, a kid they've never exchanged cell/email addresses with and haven't ever communicated with outside of school.
3. How far in advance of the party the invitation was spent. (Age 12/13 is prime bar/bat mitzvah season & invitations are sent 6-8 weeks ahead).
4. As a grownup, nobody expects me to be friends with every single 40 yo I meet, simply because I'm also 40. This business of expecting kids to hit it off because they're both the same age, umm, isn't reasonable and ought to be rethought.
4. A kid with a disability's "affability" (usually but not always district from the disability itself) has a big impact on a kid's ability to make/keep friends.
(My littlest is super-close to her same-age nephew, who just happens to be on the spectrum. She also loathes a little boy in her class, who torments her, sbo also happens to be on the spectrum. She doesn't dislike the classmate because he's autistic -- she dislikes him because he spends inordinate amounts of time calling her nasty names).
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How you choose to define "disability" has a huge impact on on how included kids with special needs are with their peers -- like me, my eldest daughter has a pretty severe, early-onset mental illness with symptoms well-controlled with a daily medication. Is she "disabled"? Am I "disabled"?
Eldest's BFF is AC, a girl who was born with only one hand. (They met in kindy, my kid iintriduced me to her as "this is C, she has one hand like so-and-so on Barney"). I've knoen the kid for 5 years, her family and mine share carpool duties and literally the only thing her disability prevents her from doing gymnastics (the girlies take dance classes instead). Is C "disabled"?
You are right. It's the one place on my heart that has repeatedly opened up, that scar tissue can't hold together -- the grief about my daughter's isolation, her lack of friends outside of school, the fact that anyone who does anything with her outside of myself and her father and brothers, is paid.
Hi Suzanne: Thanks for your message. I think we're talking about degree of isolation here, not whether a kid is upset because a person declined their party (in this case no one RSVP'd, so no one gave him that courtesy). Being friendless is harmful to your health, that's why scientists have shown that when people experience isolation or rejection, it's processed in the same area of the brain as physical pain. If we care about children's health, then we need to care about kids who are ostracized from others. And I don't believe it's because they're not "affable." I believe they have differences that can be threatening or anxiety-provoking for other kids when there isn't a lot of education and support about disability. We also know through research that it's easier for kids to interact with a child with a simple physical disability (like the child missing a hand who your daughter is friends with) than a child that has multiple disabilities that affect communication and mobility (and may interfere with doing all those activities that your daughter and her friend enjoy). When a child has more significant disabilities, it can take time for other kids to get to know the person inside, but kids are very receptive when given the tools.
I hear you Elizabeth and I totally understand! It's a terrible injustice. I do think it's because our kids can take so long to get to "know" that the average child, without support, doesn't make the effort. xo
Yes, Louise, you're absolutely right: "Social media will never be a substitute for true friendship or inclusion." This is why I encourage youth with disabilities, and their parents, not to shrink or curtail their social circle by targeting only those without disabilities. Children want to been as normal, and they should be, but they are also going to face unique challenges. They're going someone with a disability to talk too.
Thus, if your child has the ability to play a wheelchair sports, then follow that route. Ask for help in buying a sports chair. Variety Village is in Toronto. Your kids could travel the world!
For those like myself, who have somewhat more of a severe disability, don't give up! Fight for what you want, or the life you desire. "You too belong!"
Matt Kamaratakis
Hi Louise,
Inclusion must always be a genuine undertaking, from one human being to another.
With this said, I find it troubling that kids with disabilities are attending mainstream schools, but do not participate in extra-curricular activities.
So, I encourage parents to talk to their child's social worker at there local children's hospital.
Here's a link for some programs and services at Holland Bloorview:
http://hollandbloorview.ca/programsandservices/Therapeuticrecreationandlifeskills
Thank you,
Matt
Suzanne, I think you are missing the whole point.
Well, perhaps you rrun in a different crowd of kids with disabilities -- but in my experience, "affability" is a HUGE factor in whether a kid with a disability makes/keeps friends.
Even among kids at the fairly high-functioning end of the autism spectrum, there's a HUGE difference between the kid who:
1) is a little bit flexible in aab informal, pick up game of basketball involving much younger kids
2) the one who goes ballistic on a 4 yo for "cheating" because they ran with the ball.
Even on the case of kids with a mild-moderate intellectual disability ((this is a real example! From my synagogue'sSaturday School classes):
- an older tween with Williams Sundrome who requires a "buddy"
to ensure she doesn't elope or get lost, but who is also an easygoing, joy-to-be-around sweetheart of a kid. She sings beautifully, plays the piano by ear and can't for the life of her assemble a 4 piece wooden puzzle for 2 yo. everybody wants to be her "buddy".
- an older tween with autism & another "invisible" disability who is, umm, sexually inappropriate a lot.
- another older tween whose invisible disability manifests behaviorally, who yells curse words, throws tables/chairs when frustrated and steals anything she can her hands on. Nobody wants to be her "buddy" either.
Thanks for posting the Club G video, Louise. Such a great example of how empathetic that age group can be, given the right tools.
The whole Odin media blitz left a bad taste in my mouth. Ultimately, some exciting and memorable moments were created for him, but long-term he's no better off (socially) than he was before he turned 13.
Affability is important in any type of relationship, but the reality is that a teen with a developmental disability has a greater chance of being marginalized and isolated. This article is not just about this one incident. It is much more about the systemic challenge.
Upon reflection, what I feel uneasy about with the "social media blitz" in this one particular case is that it at least implicitly shames the kids/families that did not even RSVP. There are wholesale inclusion issues throughout almost every aspect of society. Blaming and shaming others doesn't get us very far and I wonder how many people who retweeted the post would have acted the same as these families if they were in the same circumstances. It is easy to retweet from the sidelines.
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