Starting JK? It's a breeze, unless your kid has special needs

By Stephanie Ly

Our daughter Pepper will turn four this year, and though she's not your average four-year-old, she'll start kindergarten in the fall. 

When Pepper's older brother entered school two years ago I was nowhere near as nervous as I am now. But then Pepper is a special-needs child. And these last few months have been a traumatic roller-coaster for me.

The Ontario Ministry of Education lays out specific guidelines for inclusion, diversity and rights for all children to attend school regardless of ability, social or economic background. You may recall hundreds of parents converging to protest the Ministry’s “new” sex-ed curriculum which provides context for children of same-sex couples as well as introducing the concept of consent. 

My daughter will likely never be able to express consent or lack of consent. She may not be able to scream, run, or fend off an attacker. To these parents I say: How do you think this makes me feel, that you don’t think this piece of education is important? No, I certainly don’t trust that you are going to teach this to your children at home. I simply do not. But I digress.

Most parents take for granted that once they've registered their child for junior kindergarten and met the teacher, the only stumbling block is their own anxiety. When my son entered the school system, it was seamless. Effortless. 

Unfortunately, enrolling our daughter at the same school has been gruelling and heart-wrenching. There have been numerous meetings, appointments, doctors' notes and days off. Many hot tears later, we’re still unsure what September will bring for our little girl. 

For starters, we await the arrival of her wheelchair, which she'll need in order to start her school year. Her educational support worker hasn't yet been chosen, and most egregious, she was rejected from the before-and-after school program at her school because of her special needs. Wait, what? Inclusive? Not so, it seems. As a result, we find ourselves in a state of limbo for her September start. Tears of uncertainty flow regularly for me, and the anxiety is relentless.

So what of the Ministry’s inclusion mission? Does it include children like my daughter, who has physical and medical needs in addition to her cognitive delay?

All of the equipment required in the classroom (minus the wheelchair, which is our responsibility) has been set in place, we are told. We have become acquainted with her special education caseworker, kindergarten teacher, principal, school board special education coordinator, physical medical coordinator, Community Care Access coordinator and the like. 

Pepper's IEP is being worked on according to her abilities and the path we've carved for her with the support of her daycare educators. 

Yet it's August and we still don’t have a before-and-after school plan for her, something essential to our ability to work (which for me includes an hour's commute each way).

And the rescue medication recommended for our dear daughter when she has a seizure, and taken under the tongue, has been rejected by the board as a safety issue for the person administering it. A nasal spray, which we need to be trained on, will be used instead. 

What happens now? Advocacy, of course. My husband and I don our superhero capes and get our fight on. We fight for the right for our daughter to attend school with your child.

We hope and pray that she is safe, and included, and treated like an equal. We wait for the phone calls informing us of the seizures, of the accidents, of the loss of resources. We wait to see what impact a possible teacher’s strike might have on special-needs programming. And we get ready to fight.

See you in September.

Follow Stephanie on her blog at Pepperlepsy.

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Team Bryson: Quiet but mighty in NYC parade

By Laura Williams

Last weekend, my family decided to take the ultimate road trip to New York City. The idea started about five months ago when Louise at BLOOM wrote about the NYC Disability Pride Parade.

This parade was conceptualized by a father and famous jazz musician Mike LeDonne. He wanted to raise awareness and create community pride about disability to honour the pride he feels for his daughter Mary, who has Prader Willi Syndrome.

The disability community in New York City jumped in with both feet and members from the community led the charge—creating awareness about the event, getting permits, planning the route, and connecting with participants. It was an example of inclusivity in action.

Participating in this event was important to us. As a family, we have experienced amazing examples of inclusion, acceptance and kindness. Unfortunately, we have also experienced heartbreaking moments where we’ve not only been blocked access but asked to leave due to our son Bryson's vocalizations—he is non-verbal and makes sounds to express himself.

Walking side by side with others who have lived this kind of experience in New York was very powerful. What struck me was how quiet the march was. Parades are typically rowdy and loud and expressive.

At this parade many of the people around us were non-verbal. It was much quieter, but no less jubilant and meaningful. Voices that aren’t loud can be missed—but not when people come and walk together, making their presence undeniable.

This reminded me of how very important it will be to continue being visible in our community, looking for any opportunity to include our son in “everyday” activities even when it means we will have to face glares, stares and confusion. That is no longer my burden, it is theirs.

I was so very proud that day to be included in this community—one that demonstrates the elegance of quiet and the boldness of the human spirit. We have so much still to do to ensure all people have the opportunity to lead a dignified, fulfilling life—and I want to be part of that transformation!

Laura Williams is director of Client and Family Integrated Care at Holland Bloorview.



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Why is Guy Mitchell's death receiving so little coverage?

By Louise Kinross

It's shameful that the death of Guy Mitchell (left), an adult with disabilities who drowned after falling into a cistern at an Ontario-funded group home in 2012, is only being reported locally in Hamilton, and not across Ontario and Canada.

Hamilton Spectator reporter Susan Clairmont is doing a top-notch job of recounting the horror story unraveling at a coroner's inquest in this series of articles. The Ancaster home was run by Choices, an agency that receives 87 per cent of its funding from the Ontario Ministry of Community and Social Services.

An 11-year-old girl with autism and two adults with developmental disabilities lived in the home, which veteran police who responded to the death described as the worst they'd ever seen: no heat, water or food and human waste everywhere.

For months, outsiders contacted all the right authorities to raise alarms about the residents wearing filthy clothes and having unexplained injuries, but no one did anything.

Two starving horses and a dogs were seized from the premises. 

But no one came for the human inhabitants. 

Until Guy Mitchell drowned.

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Love speaks louder

By Emma Ockerman

I've had this conversation 50 times already. I stand on my front porch as my hand just brushes the brass-plated door knob and I turn to speak to a new friend who waits to enter my abode.

It could be called a warning, even.

"Listen," I say gingerly, as if I'm telling them their cat has passed. "Before you come in my house, you should probably know about my brother..."

They nod. They have heard from others before, and their nonchalance allows me to believe that their entrance into my house will be the breakthrough of normalcy I've never had with a friendly introduction.

But then I open the door.

My 15-year-old brother Tristan tends to be a recluse from society in his room, but he always takes the chance to meet me by the door when a new friend is being introduced. One hundred and twenty pounds of ignorant joy in an adult diaper, he holds a red ribbon and a "sippy" that supplies his liquid diet. Tristan's bib is fashioned out of a bandana that gives him a slightly ridiculous cowboy affability.

But he can't help it. I have never expected him to be anything but himself.

Tristan is severely autistic, but it doesn't really cross my mind until a new friend is standing beside me, their eyes shifting from my brother, to the floor, to me.

"What do I do?!" they silently plea and I would tell them if my brother wasn't already staggering towards them—hand outstretched, wet with drool.

"Hi there!" they say, falsely chipper. But Tristan is mute, so he drags them to whatever location in the house he sees fit at the time.

Tristan makes the rules to which everyone must follow.

He drags anyone who obliges to his small red cooler beside the kitchen sink, which holds his "sippies" containing a mixture of Ensure and Lactaid. Tristan coaxes them to open it and give him something to drink.

Anyone who has a heart, or essentially fears what he will do if they don't comply, plucks a "sippy" for Tristan and follows him to his room to enjoy The Little Mermaid on his monument of a television. It may not be polite on my brother's part, but he's not accustomed to his own company.

I am never looking at my brother at this point, but the house guest. My capacity to love a friend lies in their capacity to love my laughable, and maybe only in my eyes, adorable brother. My introductory speech doesn't lessen the shock in their eyes when they soak in Tristan's undeniably mentally challenged face.

But at this point, I have never had a friend deny the hand of my soon-to-be 16-year-old brother. To reject Tristan would not only be rejecting my friendship, but the friendship of a boy whose disorder has blessed him with the inability to hate anyone.

And they probably wouldn't want to face the wrath of me, his big sister, if they did.

Editor's note: About 16 or 17 years ago, I met Tristan and Emma in Michigan with their parents Jude and Steve. In addition to autism, Tristan has Langer-Giedion Syndrome, the same genetic deletion that my son Ben has. We had taken Ben to see a speech therapist in Michigan and had made contact with the Ockermans through a parent support group. All these years later, as Tristan turned 19, I heard from Steve. He told me about this story his daughter Emma wrote when she was in high school. She's now studying journalism at Ohio University. I particularly like the headline she chose.

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How I became a sister to my brother with autism

By Melissa Ngo

I was taught that I was the expert. The “go-to” person. As the sister of someone with autism, I was the translator, the teacher, the therapist, the person who explained, the mighty protector and defender. As a child, I assumed these roles without question. For my brother Scott, I wore all of these hats at once.

I was a “good” sister for doing therapy exercises with him. When he couldn't find the words, I spoke for him. I was even the sister who swore and swung at the other kids for calling him names.

One time another student came right up to my face and said “Your brother is a stupid retard.” And the sound of that last word barrelling out of his mouth made me cringe, and I felt the long sear of his disgusting words. I swung and yelled at him and he ran away.

Later that day I went home and wrote down questions about a colourful book that my brother had borrowed from the local library. After all, he needed to work on his comprehension. We read the book together, and it was a nice feeling to read a book with Scott.

Then I told my mom about how that student made me feel terrible. The other child was wrong, she said, and didn't know any better. Scott was lucky to have a big older sister like me, my mom said. But please don't swing at the other kids next time! Right before bed, I thought, “I hope that if the same thing happens tomorrow, it happens to me, rather than Scott.”

All hats were on that day.

While I don't regret those swings, I realized in my teen years that I had to shed some of these roles. While it was great to feel like the expert on my brother—to be the person who wanted to know my brother the best out of everyone in the world—I realized that perhaps not wearing every single hat, one of top of each other, was the best thing for him or me.

Growing up Scott attended programs to improve his deficits in “social skills and communication (imagine being defined by what people say you don't have).” These services were a long drive to Toronto from where we lived in Markham. The people running them didn't seem to genuinely connect with Scott, and there was a strict relationship between the therapist and Scott. They gave him worksheets that were for a young child and he couldn't relate to them. We paid some serious money for these services.

Oddly, what ended up being most beneficial for Scott was right at home! My friends came over and he'd hang out with us, people who were his own age and non-judgmental. And it didn't cost anything!

Scott was happy and he would sit with us and focus on the interaction. My friends would say “Hi Scott. How are you?” and they would wait for his reply. With us, Scott was social, engaged and communicating. Was it magic? Or was the American Psychiatric Association's diagnostic manual, known as the DSM, unable to define every person with autism? With my friends, Scott didn’t need a defender. He didn’t need a therapist. He didn’t need a translator. He didn’t need someone explaining what “autism really is” (and really isn’t).

This was when my friends and I decided to start a high school club called Hand Over Hand. We put posters up around school telling people about different disabilities. We started a social group (free, run by youth volunteers, and very recreational). During university, we continued to work with local organizations and businesses in the community that helped us with the social group.

We started a Pen Pal Program between our members with disabilities and our volunteers to help everyone feel more comfortable when we got together (this also helped with hand writing and computer skills). It's 10 years later, and we've incorporated as a nonprofit organization. We continue to run three programs regularly, and we throw the only accessible music festival for people with disabilities in York Region. Hand Over Hand was founded on friendship and collaboration. Not only do our members work on personal goals, but they build strong connections with the people around them, and feel safe and empowered in their community.

Hand Over Hand sprouted because I realized I didn’t have to be a pathologist, transcriber, or a knight to my brother. I didn't have to wear each and every hat. I just had to be his sister.

And this is not to say that I never wear any of the hats anymore—sometimes I still have to wear a hat or two and that’s okay (in fact, I like to think of the hat I wore at 14 years old when I told the school board that they need to pay attention and step up their game).

I also wear new hats. Today I find myself explaining “neurological differences” rather than autism or translating words like “retard,” so people know why it's offensive.

Over the years, I've seen that while ignorance in the community still exists, there are people who care, people who want to learn and eradicate discrimination. From a young age, I knew I didn’t need anyone’s pity about my brother’s autism diagnosis, because it's a part of him that he shouldn’t have to feel ashamed about. I used to say that Scott is, first and foremost, my brother. But perhaps I could have simply said: I am his sister.

You may also know Melissa Ngo as a family support specialist in Holland Bloorview's Family Resource Centre. Tomorrow (July 18) Hand Over Hand is hosting an amazing, accessible music festival in Thornhill. For more information, e-mail info@handoverhand.ca  

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A creative gem in the heart of Toronto

By Louise Kinross

This morning my son and I visited an arts program at L'Arche Toronto.  Sol Express runs two programs during the year: One is for actors with disabilities and the other is for creative artists with disabilities.

They each run two days a week, from 10 a.m. to 3 p.m.

The L'Arche building in the Pape and Danforth area is a beautiful renovated church with studios upstairs. I wrote about visiting the original L'Arche community, founded by Canadian humanist Jean Vanier, in France a couple of years ago. L'Arche brings adults with and without intellectual disabilities together to live and work as peers in 147 communities around the world.  

The summer is a little bit different at Sol Express, but my son and I dropped in on some warm-up exercises for performers. We sat in a circle and did some name games with gestures with two artists leading the group and about six other participants. By the way, I just wrote down every single one's name, so the game worked.

We had a tour of the art studios, which reminded me of some of the things you'd expect to see at Holland Bloorview's Centre for the Arts. There was a cool paper mâché forest of trees, a gorgeous book of photos of participants wearing elaborate masks they'd created, and a large assortment of hats and costumes.

Other memories include watching a funny, black-and-white, silent movie the performers had produced, in costume, and my son strumming a blue ukulele while a leader played Stand By Me and Rock Around the Clock on her guitar.

Sol Express is a welcoming, kind place. I could see my son developing friendships there. I liked being there and being included.

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'I wish [disabled] dolls existed when I was a kid'

By Jessica Geboers

When I was little I pushed my red and blue kitchen booster seat around the floor on my tall knees, pretending it was a wheelchair for my doll. Like many kids, I played house with dolls, often pretending I was the mom and they were my children. I can’t remember if using the booster as a wheelchair was my way of compensating for the lack of disability representation in my toys. But maybe it was. Kids act out what they know. It was perfectly normal for me, a child with cerebral palsy, to pretend I was the mother of child with cerebral palsy. And, for lack of a more accurate option, I had to use my imagination.

There aren’t many toys that depict the story of a person with a disability. However, all minorities have struggled to get representation from the toy industry.

There was Share A Smile Becky, a Barbie I had in my vast 1990s collection with a pink and purple wheelchair with sparkly wheels.

Her unfortunate title aside, I remember thinking it was cool to have a Barbie that reflected at least part of my reality. However, her time on store shelves  was short lived and she’s since been discontinued.

Some progress in diversity is being made. Mattel announced last month that they’re introducing 23 Barbies with different eye colours, hair colours, skin tones and face shapes. Until now, most Barbies were blonde. Unfortunately Barbie’s skinny body shape, which has been shown to be anatomically impossible, remains unchanged. Most girls and women, including those with a spectrum of body sizes and abilities, don't see themselves reflected in these dolls.

Cue the Toy Like Me campaign, which debuted in April. This Facebook and Twitter initiative was started by three British women: journalist Rebecca Atkinson, who’s deaf and visually impaired; Melissa Mostyn, a deaf writer whose daughter has cerebral palsy; and Karen Newell, a former play consultant whose son is blind. They're asking social media users to join the campaign by sharing images of toys, often handmade or altered, “that reflect disability positively,” as well as letters from children asking the toy industry to create “toys like them” using the hashtag #ToysLikeMe.

“When I was growing up, I never saw a doll like me,” Atkinson said. “I had two hearing aids. In the real world, there were people like me. In the doll world, I didn’t exist. What does that say to deaf and disabled children? That they aren’t worth it? That they’re invisible in the toys they play with? That they’re invisible in society?”

A month later Makie Lab, a 3D printed, made-to-order doll manufacturer out of London, England, answered the call by creating three dolls with visible disabilities or differences: one has vision loss and uses a cane, another comes with hearing aids or a cochlear implant, and the final one has a red facial birthmark. “It’s a pretty even race between the three, but Hetty (with hot pink hearing aids) is leading [sales] right now,” the lab told me in an e-mail.

“It’s fantastic that our supercharged design and manufacturing process means we can respond to a need that’s not met by traditional toy companies,” said Matthew Wiggins, chief technology officer of Makie Lab. “We’re hoping to make some kids—and their parents—really happy with these inclusive accessories.”

Judging by consumer comments on the Makie website, many are happy with the dolls that include disability storylines. I'm also happy. I wish these dolls had existed when I was a kid.

An argument can be made that it’s up to parents—not a toy—to help a child with a disability feel comfortable and confident. But I think these dolls are a helpful tool. And they’ll broaden the awareness of other children and families, too. After all, you can’t adjust to something you’ve never seen or played with.

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School's out

By Louise Kinross

Hello peeps!

Quick update. My son had his surgery to remove two benign bone tumors two weeks ago. It went much better than planned and his incisions are healing nicely, though he still has some pain. We had very good care in the hospital.

My son is now out of the school system. We have been unable to access person-centred planning or an increase in our Passport funding since he left school. I am advocating for this now.

Today my son and I visited a day program. It's in an industrial warehouse so it's kind of isolated. The people were very friendly and we recognized some people. They were setting up for a barbecue. Unfortunately they don't do sign language at this program. I think it would be a nice social environment for my son, but I don't think he would be able to work on the job skills he was developing at co-op. Because he doesn't speak and wouldn't have anyone actively signing with him, I think he might get lost there. The program costs about $1,500 a month for Monday to Friday, 9-3. That adds up to a lot of money.

We have been on the Developmental Services Ontario wait list for community supports like day programs, case management and person-centred planning, and not received any service in the last three years. My son's support needs, as assessed by DSO, are greater than 70 per cent of those on the wait list, but apparently our family is not "at risk," even though my son is not able to stay on his own at home (which makes having two parents work a little difficult).

I will be sharing our journey as we try to find meaningful things for him to do. That could include work or activities in the community with a support person, or some kind of program. I wish I had the ingenuity and guts (and money) of some parents who have created businesses for their children. Would love to hear any stories from people here on the topic.

Today someone on Facebook told me about this program called CORE. I hadn't heard of it and will go on a tour later this month. Contrary to the web description, it is primarily targeted to adults with developmental disabilities. They too don't have sign language support.

Another parent suggested this program called SOAAR, but it's not close by and costs $100 a day.

We are also going to visit a program at the Bob Rumball Centre and an arts program at L'Arche. 

Does anyone know of any gardening or farm programs in the Toronto area? CORE did have a farm program but it sounds like it's been put on the back burner. 

My son went with some workers and other youth to Windreach Farm for a few days this week. That gave me a chance to see Kelly Taylor again. She used to work with us in Family and Community Relations at Holland Bloorview but now manages the Windreach volunteer program. Windreach also has an adult day program, but it's way too far for us to do the commute.

While at Windreach, Ben slipped away from the group to return to this goat (above) who he was determined to feed.

Stay tuned.

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Courage Project: 'Accept things as they are'

A father, who we’ll call Bruce, contacted us about sharing his story in our Courage Project series. To protect his child, we have changed some identifying details.

Bruce and his wife were shocked when their firstborn child, a son, was born blue, resuscitated and transferred to a different hospital.

A breathing issue was later diagnosed as a heart problem, then other life-threatening conditions emerged. During the first few weeks a doctor from genetics came by and, without explaining why, began measuring the boy’s eyes, ears and face. Later it was announced that their son was deaf and had global developmental delay.

“After he was born my wife said ’He’s not my child,’ and those words have resonated with me every day since,” Bruce says. “She just couldn’t accept a son who was different from a regular baby. I tried to convince her that it was workable, that she would accept him over time, but she never did.”

Bruce worked long hours and travelled often. He arranged for caregivers to support his wife almost 24 hours a day and, when he was home, did most of his son’s hands-on care.

When his son was eight, Bruce was diagnosed with cancer. After an operation he began to spend most days at home. “That’s when I first began to suspect something. My wife was out most of the time and often a caregiver was left looking after him. When my wife was home, I’d hear screaming. I’d run into the living room and she’d be holding a slipper up and ready to hit our son because he’d wet his pants or was not cooperating with her attempts to dress him. He had some deep bruises on his legs, but she said he’d fallen. She stopped putting his splints on because she said he didn’t like them. She was supposed to be going to my son’s school to volunteer for the day, and then I found out that she popped in and left right away. I later learned she’d found another boyfriend.”

When Bruce confronted his wife he says she threatened to kill him and their son. “I went to the police and they arrested her. It took a hell of a lot of courage to make that decision. I was crying in the police station thinking about how she had abandoned both of us. How was I going to cope alone with my son’s needs?”

Bruce retired from full-time work to spend more time with his son and “the two of us get along fantastic together.”

His son lives with him but has one overnight a week with his mother. “When my son comes home from school, I’m there, and I work with him. I’m amazed at the progress he’s made these last few years.”

Bruce says a number of things gave him courage during this period. “My son is my courage. In his 12 years he’s been through a lot more than I ever could imagine. All the operations, all the blood tests, all the conditions he’s trying to beat, the prodding and the probing. I get courage from him.”

When his son was first hospitalized as an infant, it was a cleaning lady on the hospital unit “who gave me courage,” he says. “We were two months into this new world and more issues had been found. ’Don’t worry,’ she said. ’I’ve seen people go through this before, and you’ll become accustomed to it as time goes on. You’re not alone.’ She told me to focus on one thing at a time, that I can’t face the whole problem at once.”

Bruce says it’s important for parents to work on acceptance. “You have to accept the fact that your child is who he is and love him for who he is and not for what you want him to be. You can’t keep looking for answers. Once you accept things as they are, you realize there’s a new path open to you. For example, after working with my son’s teachers at age 11, he no longer needed diapers. My son's hands may be twisted with arthritis, but he can hold a pen properly and  wrote his name for the first time at age 12. I have lots of examples of how  consistent hard work and good teacher-parent communications have made small, positive improvements in my son’s life.”

Bruce says a support system is also essential. He has two close friends that he can call on if he needs a short break from his son.

The other key support in Bruce’s life was a social worker he saw at a children’s rehab centre. “She listened to me, and she helped me get through it. It was important that it was someone who understood our situation of having a child with additional needs.”

Part of accepting his son’s special needs involves being grateful, he says. “Coming to Holland Bloorview and SickKids I’m often struck by how wonderful it is that my son doesn’t have more severe disabilities or illnesses.”

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