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'I do feel sad sometimes, but Kate isn't'

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.

'Who is teacher?'

I just read this exquisite piece by Kari Wagner-Peck, above with son Thorin, 8. Thorin attended Grade 1 at public school last year in Portland, Me. Kari is a fabulous writer who blogs at A typical son about raising her son with Down syndrome. Make sure to bookmark her blog. She always has a unique perspective. I can't wait for the next one in this series! Louise

By Kari Wagner-Peck

We started homeschooling or unschooling or what you might call practising loving and respectful learning in September.

This is the beginning of the next chapter in our lives. How we got to THAT is a whole other story I have not wanted to write about. Expect a post on that soon entitled something like: It Was Not Just One Reason.

When I explained to Thorin we were homeschooling he had two questions. The first was easy to answer:

“I call you Kari?”

“If that’s important to you, sure you can,” I said.

“Thanks you, Mom.”

The second question was difficult and painful and probably at the heart of learning at home:

“Who the teacher?” he asked.

“No one is the teacher,” I said.

“No! Who the teacher?”

“We could both be the teacher?”

“No!”

“We are both the student?” I offered.

“No! Who the teacher!” he screamed.

“You need to learn reading, writing and math. I have to figure out how to help you by learning how to help you. Confusing, right?”

Silence.

“Thorin, I am not sure what I am doing, yet.”

“No!!!!!!!!”

“I am your mom. I am learning, too. I don’t want to be a teacher. I want us to be a team.”

Silence.

“Can we be a team? See if that is okay?”

Long silence.

“Can we try?” I asked.

“Okay, Kari.”

THEY say start with what your child loves. So, Thorin and I are writing a book together. My co-author and illustrator (see below) does not want to share anything but the central characters in our story although we have a title, character names and a plot. As a team member I have to honour his request.

Thorin’s word use has quadrupled, reading and math levels have increased more in two months than the entire first grade. Most importantly he is happy again.

I have learned that the greatest teacher is: belief.

Expect more on all of IT.

Illustrations by Thorin.

The 'unwelcome' mat

By Steve Kean

I love Toronto, I really do. But sometimes I just don’t feel the love in return.

A few weeks ago was one of them. I was at St. Lawrence Market getting supplies for dinner with my wife and a friend when my favourite cheese guy told us that he was leaving to manage a new restaurant in the neighbourhood. But the new hot-spot-in-the-making—in a historic building—won't be wheelchair accessible, he said, so I won't be able to check it out.

I have spina bifida and use a wheelchair.

I've been inside 400-year-old buildings in the U.S. that have been retrofitted, so I don’t buy the “well, it’s a historic building” argument anymore.

In 1967 my parents were supposed to be rejoicing in the birth of their first child. Instead, they watched helplessly as concerned doctors and nurses rushed to save my new life. Since that fateful day I've had over 15 surgeries and probably consumed more than $100,000 in health-care dollars. A system of people, most who've never met me, has expended substantial resources to keep me alive.

So why then is it that the system that valued me so highly when I was born doesn’t deem me worthy of having an accessible environment? Access means I can contribute and live a full life.

Too often, our health-care, businesses and city attractions and amenities seem to work against people with disabilities and their families.

Is it because we're not cute little babies anymore? Do I not matter because I'm a grown up—sometimes smelly, sometimes scruffy? Does the government believe that I should take care of all my needs just like any other adult?

Well, I can take care of most of them. I do a job, two in fact. I help to pay a mortgage and even clean the place. And, I cook. In my own home, designed from the floor plans to meet my needs and those of my wife, everything works. Our little box in the sky is my sanctuary. There I feel welcome. But life is lived outside too, and that’s the problem.

Sometimes as I wheel around Toronto I notice every barrier that society has put up to make me and other people with disabilities feel unwelcome.

I count every step. Every staircase. Every door without an automatic opener. Then there's the insensitive jerk who luxuriates in the comfort of the oversized, accessible public bathroom stall as I wait, trying not to piss my pants.

Usually I am 'grace under pressure.' But occasionally I come apart. I just snap. By the time I get home I'm raw. I need a hug. I need to vent.

There, in my soft place to land, I feel the warmth and love of my wife's hug. She listens quietly and intently as I recount my day. Sometimes I scare her: “Why did they bother to keep me alive and healthy only to throw me out into a world that doesn't appear to want me?” I'll say.

Businesses see accessibility as an added expense and don’t see the value. Many employers see a wheelchair or some other difference and don’t see the skills and abilities of a person. They have to be shamed or worse, forced by the law, into making people with disabilities part of the equation.

I've thought a lot about how I can cope better in a city that makes me feel like a burdensome afterthought, instead of an integral part. Maybe some of my ideas can help youth with disabilities and their families.

First, seek out that hug. Family and friends are on your side and we all need allies when we leave our sanctuaries and go after what life has to offer. Once your spirit is bolstered and a little less raw and raging, look carefully at the particular barriers that are getting in your—or your child's—way.

Who’s directly responsible for a barrier? Who can help you take it down? Try talking to them. It might just get fixed and you’ve helped not only you, but everyone with a disability who comes after you.

Some walls that get thrown up in front of us can’t easily be torn down and so all we can do is try to work the problem. Speak to someone on the ground, maybe the store manager. If that doesn’t do it, work your way up the line.

Toronto hasn’t put out the welcome mat for people with disabilities. Will it ever?

I can’t wait. Time is moving forward and limited. I am squeezing every ounce of life out of my years, to borrow from a cliché. See the golden light first thing in the morning. Take a picture in your mind or with your camera or phone. But see it. Feel it. Notice everything you can.

When the things you can’t access get under your skin, ask for that hug and then fight just a little for change. Other people will notice. The next person with a disability will be able to spend more time here enjoying life, and less time struggling and feeling excluded, thanks to you. Maybe they'll even feel welcome in Toronto, like they belong.

Steve Kean works three days a week as programs and services coordinator at The Spina Bifida and Hydrocephalus Association of Ontario and two days a week as Steve Kean Photographer, doing commercial photography. Visit if you are a foodie!

Why I chose a 'special' school for my child

By Anchel Krishna

Having a child means making lots of decisions. When you have a child with special needs, you make decisions on top of decisions.

Last year, as my husband and I prepared for our daughter, Syona, to enter junior kindergarten we had a big decision to make: Enrol Syona at our local school or in a specialized three-year program that incorporated the standard curriculum with additional supports and therapies.

The local school meant a connection to our community—to other parents and kids who live close by. The special program meant three extra years to give our daughter a head start with smaller classes and therapists and teachers looking for ways to incorporate therapy into her day-to-day activities vs just setting up supports for her.

We participated in transition meetings, made lists, weighed the pros and cons and decided to enrol Syona in the specialized program.

One of my biggest fears as Syona’s mom is that people will look at her physical disabilities and communication challenges and underestimate her abilities. I’ve seen and heard how quickly and easily that happens in the school system. I figure three years of the specialized program—and the reports from teachers and therapists it'll generate—as well as opportunities for Syona to progress and mature will prepare her to transition well to our neighbourhood school.

Syona’s had a strong start so far in the specialized program. Despite the long commute, she has a great bus driver and has made some strong relationships with the kids on her bus. This is a great way for her to start and end the day. She has a wonderful and warm classroom team who truly care for her.

There have been tears (lots of tears). But that was to be expected. Syona’s an only child who spent the summer with her grandparents and several caregivers. She does a lot of one-on-one therapy. Up until this point, almost every adult in her life has provided her with undivided attention. At school, she’s learning to be a little more independent, play by herself and with her peers and, yes, that sometimes means a few tears. I know Syona will power through them and thrive at school.

When Syona comes home from a long day and asks to go to the park and I have to say no—because there's only just enough time to have dinner and a bath before bed—I wonder if we made the right decision.

But when she comes home and tells me about going swimming, or riding an adapted bike for the first time, I know we’ve done the right thing. As parents we make the best decisions we can at any given moment. I’m looking forward to what the next three years will bring.

Anchel Krishna is manager of communications at the Children's Treatment Network. She recommends these two CTN e-bulletins on Transitions to school and Special needs and the school system. Anchel blogs about special-needs parenting at Today's Parent.

Free to move, free to learn

By Louise Kinross

For three months researcher Coralee McLaren watched 20 kindergarten children play in the Bloorview School—some with disabilities and some without—to study the relationship between how they moved and their physical environment.

Recent brain research shows that when children are free to move naturally they interact with objects and features of their environment in a way that promotes learning.

But what does this mean for children with disabilities whose mobility is restricted?

“What we discovered was that not only do the physical features of the class elicit creative ways of moving, but movement itself, and the children’s interactions and how they move together, generates new ways of moving,” says Coralee, a professional dancer who was studying the children for her PhD thesis in nursing. “By watching the other children move, or being caught up in the physical energy of their movement, the children with disabilities were drawn into different groupings and found non-habitual ways of moving where they experimented with their bodies.”

Even when children aren’t moving, research suggests that watching peers at play can trigger brain responses similar to those activated when children are playing themselves.

The findings could have implications for how classrooms are designed and provide additional evidence for the benefits of inclusive education.

Coralee, who watched and filmed the kindergarten children’s unguided play and interviewed them about it, was fascinated by how the children used objects to change the way they moved and their environment.

For example, they modified a pretend cockpit chair in a mock space station set up by teacher Paul Alcamo.

“It was a scooped chair with a base that was detachable to give you the feeling you’re flying in a rocket,” Coralee says. “When they discovered they could take the chair apart they turned it into all sorts of things. They’d get rid of the base and make a teeter totter and hook up levers and straps, and they’d tip the seat like it was a swivel chair, and they’d use the base to climb over and around. Some of the children that used wheelchairs and walkers abandoned them and crawled, using the floor and the shelves to propel themselves around the space, to integrate with their peers and experiment with the chair.”

In addition to the pretend centre, Coralee looked at how other physical elements of the class—the chairs, the space between tables, the pathway that connects two sides of the class and the wheelchairs and walkers themselves—generated movement.

“I asked one little non-disabled boy ‘If you had a choice to move any way that you wanted to in the class, how would you move?’ He said he wanted a wheelchair like his friend because he can move so fast and I can’t move that fast. The chair became a non-issue because it was the speed and capability of his friend that the boy found remarkable.”

Coralee and scientist Barbara Gibson just received funding from the Canadian Institutes of Health Research to co-lead an interdisciplinary team of researchers on a three-year study that will use artistic and scientific methods to build on this doctoral research. Coralee is now a post-doctoral fellow at the Bloorview Research Institute, housed at Holland Bloorview Kids Rehabilitation Hospital in Toronto.

In the first year of the Moving Together study, researchers will develop a dance-play event that integrates objects and choreographed movements to try to elicit some of the creative encounters Coralee observed in Bloorview's reverse-integration kindergarten. Children’s muscle and brain responses will be tracked.

In the second year, children at a school for physical disability will participate in this dance event with peers without disability.

In the third year, the dance-play event will be performed by children with diverse abilities in an immersive live theatre lab at McMaster University in Hamilton, Ont. “We’ll measure neurologically and physiologically what’s happening with children when they’re moving in this space in an artistic way, and we’ll also measure the responses of the audience.”

Coralee says the findings could inform how integrated classrooms, hospitals and medical clinics are designed. “We want to tease out this social piece of how movement itself incites movement. What is it about children moving together that starts to change their movement? How do children with disabilities start to move differently simply by being integrated and moving with their peers?”

Illustration by Jana Osterman.

Where everybody knows your name

By Louise Kinross

Ben's done an amazing co-op program at Variety Village this year. He works at the club two to three days a week, cleaning equipment in the cardio room, counting inventory and helping members get set up on machines.

Anyone who's been to Variety Village knows it's an exceptional place. There's a sense that everyone belongs: young and old, those who walk and those who wheel, those who speak and those who don't.

Today I went to visit Ben because he was having an assessment with a physio. I noticed as we walked around the track (he on bike) and through the halls that people stopped to recognize him. A guy in a wheelchair held up his fist to bump Ben's fist. Another one gave him a high-five. I was introduced to CEO John Wilson and he shook my hand and thanked me for Ben's contribution. Even an older gentleman who was walking around the track knew Ben.

Ben was relaxed and knew his way around. Did I say Ben was relaxed? Incredibly relaxed. He smiled while riding the bike. As we put it away he showed the physio and I one of the hand-powered bikes and signed that he wanted to try it too. Then he took that one all the way around the track as well.

This surprised me. For the last couple of years Ben's done very little exercise. We've struggled to find something that he can do and enjoys.

The only bike that ever worked well for Ben was an adaptive bike he used while an inpatient here at Holland Bloorview. He loved cruising around the halls and it gave him a great sense of freedom.

I wanted to get him one of his own—until I learned that it cost several thousand dollars.

I couldn't understand why it was so expensive, because the parts all seemed to be standard ones that are mass-produced. Welcome to the world of "specialized equipment" and its inflated price points. We'd tried to adapt regular bikes ourselves but without success.

Today I began to see how Variety Village's physical design and accessible equipment and welcoming culture made it easy for Ben to enjoy exercising.

The physio said an adapted bike would be wonderful for Ben. She also told us about personal training offered at Variety Village. The club isn't close to us, but I began to see how much it's worth the drive. Maybe my family could start working out there.

I've had some disturbing personal reminders recently of how unwelcoming people and places can be to people who are different.

A few weeks ago, Holland Bloorview life-skills staff presented findings of a review of 56 studies on friendship for youth with disabilities. Research shows that in general typical peers interact in a superficial way with disabled youth.

I get that. I see it.

And that's why I don't take anything about Variety Village for granted. What they've created is priceless.

Two solitudes

By Louise Kinross

In the last couple of days I've seen parents argue for two radically different visions of how to educate children with disabilities.

In this piece in The New York Times' Motherlode blog the mother of a 10-year-old with an intellectual disability who can't speak says that children like her daughter need special, separate schools. "Alongside her peers with disabilities, she's thriving in a rich, complete school community," writes Margaret Storey, who says she's surprised to describe herself as a "segregationist."

Storey writes about how mainstream classes can become "exclusive and stigmatizing" for children with profound disabilities because they don't have the resources to hire highly-trained staff to provide one-on-one support. "Abstractions about inclusion may fail to comprehend my daughter's needs," she writes.

We still need separate schools, Storey says, and they need to be well-funded.

Yesterday in a new Ted Talk called Disabling Segregation, filmmaker Dan Habib, father to a Grade 8 son with cerebral palsy, says that all children with disabilities should be taught in general education classrooms.

Habib notes that in the U.S., 56 per cent of students with intellectual or developmental disabilities spend their entire day in a self-contained class or separate school.

This flies in the face of 35 years of research, he says, that show that disabled kids who are included in general education classes have better outcomes socially, academically and behaviourally and do better after they graduate.

Equally important, Habib says, is that studies show improved grades and social benefits for typical kids who learn alongside peers with disabilities.

What do you think?

Read the Motherlode piece and listen to Dan Habib's talk and let us know.

Hope for school inclusion!

This is a brilliant NPR piece about an elementary school in Boston. Thirty per-cent of its student body has learning disabilities, and these kids learn alongside their peers. Watch the video!

Tips Parenting

'I do feel sad sometimes, but Kate isn't'

'Who is teacher?'

The 'unwelcome' mat

Why I chose a 'special' school for my child

Free to move, free to learn

Where everybody knows your name

Two solitudes

Hope for school inclusion!

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