the invisible child

Last summer, I wrote about social exclusion from a mom’s point of view in a piece called The Invisible Mom.  It was originally published on the Bloom blog and then picked up by Huffington Post and Seleni Institute.  It still gets retweeted on occasion.  I know that the topic really hit a nerve.

Liz Lewis, an anthropologist, writer and sister of a woman with a disability, published In the Community, but Alone on the Bloom blog today.  I’m still in my pajamas and nursing a cold cup of coffee, but her essay made me outraged.  Not because I disagreed with her sentiment, in fact the opposite:  I was outraged at a society who continues to happily exclude people with disabilities in their world.  Our loved ones are ‘allowed’ to go to community schools, or live in the community, but are they actually embraced by the community as one of their own?  In Liz’s sister’s and my son’s experience, the answer is no, no, no.

What the Invisible Mom was about was about having an Invisible Child.  True, my son’s disability is also manifested in a physical way – you can look at him and know he is different.  So he gets stared at a lot (which I’ve learned to tune out over the years), but is he welcomed and included in the community?  No, he’s not.  My husband tells me that it is tribal:  that people fear people who are different.  But it is 2014!  We have committed to inclusive education so that he IS included – and that to me doesn’t just mean the school tolerates having him sit in the classroom.  Inclusion includes social inclusion, but here’s the stark reality:  while the teachers do their best to ensure he’s included in all activities, including recess and gym class, the sad fact is that the other children do not include him socially, in a meaningful way.  Number of birthday party or playdate invitations from school?  Zero.  As an assistant principal said to me:  we cannot force kids to be friends with your son.

I think we need to turn this issue upside down.  I’m tired of being told to be the super fun mom so kids want to come over to our place and be friends with Aaron. (Um, which hasn’t worked lately anyhow). I’m tired of hissing at Aaron to ‘behave’ and ‘not to be weird’ when we are in public, for fear of the stares and judgement.

How about we stop using the word ‘society’ and start saying you.  

How about you, parents of typical children, work hard to teach your children not to be afraid of all of those with differences?  How about when you talk about diversity, you include children with disabilities in your formula?   Why is it up to us to always beg and plead for you to remember our child when you are crafting birthday invitations?  Why is this my responsibility and not yours?  Do we all not want to teach our own children to contribute to a kind, welcoming and diverse world?

Change is never going to happen unless we start talking about these issues honestly.  Thank you, Liz Lewis, for introducing the important topic of social exclusion in a reasoned and rationale way.  I hope that it hits the mainstream, because that’s where these hard conversations need to happen….

EDITED TO ADD:
My husband constructively suggested that this post was mostly venting and contained no practical advice.  What’s the solution to the issue of social exclusion?  I’ve thought about that, too!

Here are some tips and hints about talking to kids in the classroom about a child with Down syndrome (or any other difference):  The Down Syndrome Talk.  And for families teaching their children about diversity and differences?  How to Become Part of Aaron’s Village.  It starts as simply as smiling and saying hello.

what inclusion means to us

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Where’s the data, Sue?

When I speak in the health world, I complement my stories with research and data.  This helps in two ways:  it addresses the left-brain thinkers in the audience, and it expands my topic (which is usually patient-centred care) from a philosophy that is just ‘nice to do’ to a practice that is evidence-based.  I never forget that many health professionals are also scientists, and that they believe in data and research.

I found out last week that the same is true in the world of education.  I was thrilled to be asked to speak about What Inclusion Means to Us to an audience of parents, teachers and leadership at my son’s community school.  I think this was a great demonstration of partnering with parents.  Giving all parents a voice at the school is an important step to authentic collaboration.

I prepared stories about our experience with successful inclusion.  I also talked about challenges with inclusion, and how Aaron has encountered social exclusion.  The Assistant Principal wanted me to be honest about our experiences, and I was grateful for that support – it elevated my presentation beyond just cheerleading.

There were three parents with typical kids who attended the presentation.  I was thankful that they took the time to come to a session on inclusion on a Wednesday evening.  It was clear, however, that one of the moms there had concerns about having our kids with special needs in her children’s classrooms, and she expressed that she felt that our kids took away from teaching time for her children.

This is what I needed more than my inclusion is the right thing to do message.  Bringing up research that proved that typical children actually benefit from having children with differences in their classrooms would have really helped.  When I got home, I threw out a wide net to my contacts to gather inclusion research.  Here’s what I found:

  • Dr. Jacqui Specht makes a crucial moral point that underpins all discussions about including children with differences:  It is still a popular belief that students are more or less deserving of an education based on “ability,” yet if we substituted other forms of diversity (such as First Nations students, poor students, or girls), this attitude would be unimaginable. (from School Inclusion:  Are we getting it right? on the Canadian Education Association website).
  • Placement in inclusive classrooms does not interfere with the academic performance of students without disabilities with respect to the amount of allocated time and engaged instructional time, the rate of interruption to planned activities and students’ achievement on test scores and report card grades (York, Vandercook, MacDonald, Heise-Neff, and Caughey, 1992).
  • “As Roger Slee (2007), noted research in inclusive education observes, when we realize that persons with a disability can actually be a resource and not a threat to learning, we can begin to revise or transform our approach to inclusive education.”   -from Grace Howell, Canadian Research Centre on Inclusive Education, Western University.
  • Also from Grace:  “Peck, Donaldson, and Pezzoli (1990) found that ‘adolescents who had social experiences with peers with severe disabilities perceived that as a result of these interactions (a) their self-concept improved, (b) they grew in social cognition, (c) they were more tolerant of others, (d) fear of human differences was reduced, (e) they developed personal principles, and (f) they developed relaxed and accepting friendships.'”

I love stories.  Storytelling is my thing.  Last week I learned a valuable lesson:  next time I’m talking about Aaron’s experience in his community school, I will bring both stories and data with me.  Then I will have a more complete toolkit to answer any questions that come my way.

Note:  A special thank you to Jacqui Specht and Grace Howell from Western University’s Canadian Research Centre on Inclusive Education for generously sharing these references to research with me.

a place to belong

Aaron goes to a social communication group that meets at our neighbourhood recreation centre.  He started going to ‘Friends Group’ two years ago, and at first I was leery about the rec centre.  It is stuffed with parents watching their kids play hockey at the arenas and athletic looking people at the gym.  (This is not a ‘Sue’ hang-out.  I’m a nerd girl who is much more comfortable in a library or cafe).

For a year, I cringed when I walked past the arenas full of boys playing hockey.  Aaron would linger at the window and watch the game, until a hard shot bulleted a puck towards the glass, and he’d run off, alarmed by the noise.

Aaron has talked about playing ice hockey for years.  It pained me to walk past those rinks and those parents.  With their big hockey bags and easy manner, it seemed like they owned the place.  This felt like a place that we didn’t belong.

Thinking about my discomfort now, I don’t believe I was pining for a ‘normal’ child who played hockey. But it bothered me that hockey’s competitiveness and speed automatically excluded a boy like Aaron, who could barely skate and was befuddled by the speed of such an intensive game.  It bothered me that he felt left out.

So last winter, Mike carefully constructed an ice hockey rink in our small backyard.  He shovelled the snow, put down a tarp, pounded in some boards, and went out in the cold, night after night, with the hose connected to the washing machine and laid down the sheets of ice.  Finally it was ready.  He and Aaron donned their skates and played hockey night after night.  Sometimes Aaron threw off his skates and ran around on his boots.  He loved being goalie.  He scored a lot of goals on his dad.   Finally Aaron could play hockey.  This spring we’ve signed him up for special needs ball hockey.  He will get to play in a team (but without ice).  We are doing the best we can.

Walking past the arenas at the rec centre has become less and less painful.  The middle rooms in the centre are filled with kids in Friends Groups.  Many of the children have autism, some kids have CP, a couple have Down syndrome like Aaron, and a few others have rare syndromes.  There are peers, who are volunteers from the high school, and hang out with the kids and role model good social communication.  Examples of valuable lessons that Aaron has learned:  head up and say ‘hi’.  Don’t call people fat, even if they are. Skills that he needs to be a good friend (and to not get beat up in the playground).

Every semester, I watch the new peers get comfortable with the class.  Many of the high school kids who volunteer to work with our kids are high achievers, with an eye on a future medical school application.  It is heartening to watch their transformation.  The first few classes they appear anxious while trying to communicate with kids who have challenges communicating, kids who pace around the room, kids who hide under tables.  But slowly the ‘typical’ kids relax, and start actually having fun.

Right now, the group is having a scavenger hunt.  They are wandering about the rec centre, looking for items on their list.   Many of the parents are in the coffee shop, chatting.  I can overhear them talking about transitions, or school consultants, or funding – all the classic topics for a crowd like ours.  Other husbands, like mine, have disappeared to the gym.  The kids are having a party tonight, so we’ve brought a game and snacks.  Aaron insisted on bringing his Battleship game and cheese and pepperoni sticks, so I dutifully stopped at the grocery store and stocked up (he told me to bring lots).

This recreation centre has become Aaron’s neighbourhood hang out.  He’s comfortable here, knows his way around, and smiles broadly as he greets his friends.  I have finally realized that he deserves to be here as much as the hockey kids.  Despite my past reservation, I’m grateful that this group moved out of its home in a church basement and rocketed, highly visible, into the midst of our community.  For we all belong here together – the hockey kids, the kids with autism, the jocks, and, yes, even the nerd moms too.

cheers to all the corries

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I had a great opportunity to speak with a dear mom friend, Karen, and the beloved young lady that supports our family and Aaron, Corrie. Karen, Corrie and I spoke this morning to a Physical Education and Recreation inclusion class at the University of Alberta about “Inclusion in Real Life.”

Corrie works with Aaron as a community aide, which really means that she hangs out with Aaron on Sundays. They go swimming, build Minecraft snow blocks in the yard, and have a lot of dance parties. They chase zombies in the Corn Maze, jump on trampolines and go to Bugs Bunny symphony concerts. Aaron adores Corrie. He wakes up every Sunday morning, and demands: WHERE’S MY CORRIE?

Corrie presented eloquently to the class about what she’s learned working with children with differences over this past year. She reminded me today that we are blessed to have a community of support for Aaron and our family. This does not automatically happen. This is something that families have to build themselves, through great effort, and with some heartbreak when things don’t work out.

We have had many people come and go in our lives since Aaron was born. I remember some of them by name, like Jess, who was his lovely aide in preschool, and who just had her second baby, and Mrs. Brock, who was his wonderful educational assistant in grade 2. There has been Bronwen, his amazing OT who showed us Aaron’s awesome again when he was struggling in his old school, and Katryna, a neighbourhood girl who babysat him through her teenage-hood and now is studying to be a Speech Language Pathologist. There are people from the early days whose names I can’t remember, like the Home Care staff, who were Aaron’s biggest cheerleaders when he was just born.

Aaron’s Corrie is young, energetic, and loves to be active. She’s skilled at seeing the world from Aaron’s point of view, and has an open mind to people with differences. She’s a smart and creative problem-solver, and has bucket-loads of patience. My husband and I often work when she’s with Aaron, but sometimes we sneak off for a date – that is time well spent too.

Parenting any child is hard work. Having a child with a disability means that we need to amass a bigger village of love for our kids. I listened to Corrie today talk about how Aaron and Karen’s son have taught her to slow down, and to live in the moment. It meant the world to me to hear her share her lessons she gleaned from working with our boys.

Cheers to Corrie and all the other Corries in our lives, who are open hearted and giving. Cheers to those who believe in our kids.  We need more Corries, Jesses, Mrs. Brocks, Bronwens and Katrynas in this world.