Asha 'reshaped the way I look at the world'

By Louise Kinross

I heard this amazing interview with Ron Buliung, a professor in transportation geography at the University of Toronto Mississauga. He’s collecting data on a research project that looks at how children who use wheelchairs and walkers—and their parents—view accessibility at home and on the child’s trip to school each day. The project grew out of Ron's family's experience trying to make their front yard accessible for daughter Asha, 5, who drives an electric wheelchair. BLOOM talked with Ron about how his personal and professional life came together after his daughter was born with spinal muscular atrophy (SMA) type 2, a degenerative condition that affects the muscles.

BLOOM: Tell us a bit about Asha.

Ron Buliung: There’s a difference between how she, and we, view how she’s affected, and the clinical description that emphasizes what she can’t do. Asha’s unable to walk and never crawled, but she can sit independently. She drives herself around in a 300 lb., $26,000 electric wheelchair.

BLOOM: Oh my goodness. Have you heard about the researcher in the U.S. who adapts ride-on toys so that kids with disabilities can get moving at an earlier age? He has issues with the cost and lack of innovation in the industry.

Ron Buliung: No, I haven’t. But I agree that there’s no innovation. Why does Asha’s wheelchair have to be 300 pounds when a formula 1 race car body can be made from carbon fibre? And a lot of the technology design is medicalized. For example, Asha needs a hospital bed. But there’s no reason it has to look like a hospital bed. Many things that we need are drab and bland and dehumanized from a design perspective.

Asha’s needs are like many kids with her type of SMA—they centre around her respiratory health and mobility. She uses a BiPAP every night as a respiratory therapy to help her deal with mild apnea and to help with lung development. She has a hard time expelling secretions and had a lot of pneumonias when she was younger. In terms of the interventions she requires and the teams involved, it can mean a lot of effort and stress and sleep deprivation for us.

BLOOM: What’s she like as a kid?

Ron Buliung: She’s very, very smart. I’m kind of a bit of an introvert and she’s an extrovert. Just the other day we took our dog to the vet and Asha struck up a conversation with a stranger about cats that I wouldn’t have [initiated]. She’s always reaching out with her social skills.

BLOOM: What does she like?

Ron Buliung: She belongs to Young Voices Toronto which is a choir. She loves singing, music, art. She takes an art class on the weekend where she’s doing all kinds of painting and mixed media.

BLOOM: Does she have fine-motor issues?

Ron Buliung: SMA is degenerative, so people gradually lose some of their abilities. But right now she’s writing letters and doing what she needs to do. She’s in senior kindergarten in an elementary school that can accommodate children with physical disabilities.

What’s annoying is that her school is three-and-a-half kilometres away and we live 500 metres from the public school her sister goes to, which is totally inaccessible. It would be nice if they could be at the same school. She likes school and does well at it.

BLOOM: Is her school accessible?

Ron Buliung: They’re working toward creating more accessible spaces. Asha talks about being excluded by environmental barriers. Recently, she said there’s a concrete curb that separates part of the playground from the rest of the tarmac and she can’t get over it in her wheelchair. She knows that going on the [play] equipment won’t work for her, but she wants to be closer to the other kids. She gets pleasure out of watching kids do things. She was sad about that curb. We have to go and see what’s happening and we haven’t had time to do that yet.

She has a full-time educational assistant that she adores. But the process of getting that one-on-one is challenging. To justify the full-time EA we were told you almost need to demonstrate the need for two, in order to get one. We all know the school system is stretched extremely thin. When she first went to junior kindergarten she had a part-time EA and a bit of nursing support. But that also ended. Another weird thing was trying to figure out who can perform labour inside and outside the school. There were a lot of weird rules that can come down to the politics of labour getting in the way of the care of children.

BLOOM: What’s been the most challenging part of raising Asha?

Ron Buliung: The biggest challenge is having the help in place so we can function. For example, Asha needs to be turned over during the night, and she needs her BiPAP monitored. We have a constellation of services to help us so that we can sleep. But it takes an enormous amount of work to make that constellation function. And because there are many individuals operating within it, people drop the ball and we’re left picking up the pieces and rebuilding parts of the system. When a nurse doesn’t show up, or there isn’t a good relationship between Asha and that person, it can be very challenging.

BLOOM: You said you and your wife both work. How do you function if a night nurse cancels?

Ron Buliung: There’s a reason why they use sleep deprivation as a form of torture. Sleep is a common theme in our conversations. Even last night Asha woke up and was very upset at 4 a.m. and I went and helped the nurse with repositioning her. Within the last few weeks, two of our key nurses were allowed to go on holiday at the same time. It blows my mind, when someone’s entire job is scheduling, how we end up doing the worrying and sorting that out behind the scenes.

BLOOM: There have been a number of stories on Global about parents’ inability to get reliable night nursing for their kids.

Ron Buliung: The work of childhood disability represents a part-time job within the household. There isn’t a day that goes by when I’m not having an e-mail conversation with our nursing providers.

I’d say the hardest challenge changes over time. When we first got Asha’s diagnosis we were dealing with the shock and quite frankly, the disappointment and sadness, and the losses accumulate for everybody. No matter how you want to conceptualize exceptionalities, there are, because of the environment we live in and the systems we use and participate in, real limits. There are amazing possibilities as well, but there are also things that are very, very hard to do.

When we first got the diagnosis, my wife Tara and I would wake up in the morning and for 30 seconds we’d forget. And then we’d remember and start crying. And it wasn’t just crying—it was the worst, gut-wrenching, agonizing bawling. That went on for six months. We were given a relatively negative prognosis that Asha might not make it to kindergarten. She’s already exceeded those expectations. I believe she’s with us today and healthy and happy because we worked our asses off, quite frankly, to make sure that things are in place for her to have a good quality of life and for her health to be good. We’re on top of it, but it always feels like we’re just barely on top of it.

BLOOM: How did you move forward from those early days stuck in grief?

Ron Buliung: Time. And also, eventually you make a decision that you’re going to step up and do this and handle it and figure out what to do. I can remember coming to Holland Bloorview to get a cough-assist machine, and I thought ‘I don’t want a cough-assist machine, I don’t want any of this in my life.’

Then time moves on and you start working on health prevention and intervention, and Asha is developing and becoming a person, and you’re putting your family together and fumbling through, and it happens. You have to decide that you’re going to commit to it. That’s an important piece. You have to consciously say ‘I’m onboard to do this.’ And some people don’t. The rates of marriage failure for families who have a child with a disability are higher. But you can get support for that also.

Over time we’re getting over our grief, but you don’t ever ‘get over it.’ It is always there. We talk about anticipatory grieving and loss, particularly with something degenerative that can become acutely critical very quickly. There’s a chronic stress in your life around that.

BLOOM: What do you do to help cope with that stress?

Ron Buliung: I do a lot of biking. I’m an obsessed cyclist.

BLOOM: Do you bike to work?

Ron Buliung: Yes, I bike to Mississauga which is 30 kilometres. That takes about an hour.

BLOOM: So you’re biking two hours a day?

Ron Buliung: Yes, I do a couple of hours every day. But it’s not enough. You have to work on your mental health. Of course they’re not disconnected. You see in the medical literature that people who engage in regular physical activity are less likely to develop depression and anxiety.

BLOOM: Is there anything you’d recommend for parent mental health?

Ron Buliung: I think there’s a stigma attached to reaching out around mental health issues. I think parents should take everything they can get, whether it’s a social worker at Holland Bloorview or using their employee assistance program at work, if they’re lucky enough to have one.

In terms of challenges, accessibility is a massive challenge. From the moment of Asha’s diagnosis, we walked out of the hospital and looked around and everything looked different to me. I saw barriers everywhere. Later, just getting Asha to school involved a massive amount of work and stress to transform the front of our property so she could get from the house in her wheelchair to the school bus. The city did not make it easy. There was no box to tick to say that you needed to transform your front yard into a parking pad because there’s a child with a disability. It took two years!

In one of our initial meetings with our local councilor, she asked ‘Couldn’t you just carry her?’ My answer was: ‘She’s not a bag of groceries.’ And that totally ignored the fact that she’s going to grow and maybe she’d like to have some independence.

BLOOM: If you could change one thing in the health-care system, what would it be?

Ron Buliung: Not being able to move things forward fast enough is a chronic frustration with our family and others. Right now there’s a clinical trial for a drug therapy that’s been shown to, in some cases, get children with SMA type 1 walking. But it’s incredibly expensive—$750,000 for the first year. Health Canada is reviewing the drug in an expedited review process, but I believe they’re only looking at it for children with type 1 at the moment. Where does that leave us?

While we’re waiting for a cure, having more support available.

BLOOM: Like with night nursing?

Ron Buliung: Yes. More reliable, regular support that is carried out with a higher degree of professionalism. When I talk about professionalism, I think a lot of families are conditioned to expect not very much. A few times we ended up keeping people around too long because we were afraid that someone was better than no one at all.

BLOOM: What’s the research you’re doing now related to accessibility?

Ron Buliung: We have 12 to 15 families and we’re doing something called photovoice ethnography of the trip to school. Children and their parents are interviewed separately, but they also take photos from their home to the lot of the child’s school. The photos are used as a cue in semi-structured interviews where parents and kids share the good, the bad and the ugly of access to education.

One of the things we want to do is indicate every institution that is involved in an aspect of the school trip. It could be an agency, the bus operator, the bus driver, the school board, the province of Ontario, the City of Toronto. We want to look at how institutions either enable or produce or reinforce disability. We’re also looking inside the home at things kids and parents see that could make things easier. They have different points of view.

BLOOM: You mentioned in your View to the U interview that before you incorporated disability issues in your research, your work was a protected space, distinct from the challenges at home.

Ron Buliung: I think my initial concern was that it might be a bit overwhelming, but I don’t have that concern anymore. I feel I have this position of privilege and maybe I’m in this position for a reason. I’d like to use it to do work that’s meaningful for me and helpful to others. I teach a course in transportation geography and I’m able to bring something to those courses in a way I hadn’t before.

I’m also plugged in to the regional community of planners and government planning for active and sustainable school transportation. I wrote a series of studies on childhood disability and transport and they had a conversation about how disability can be plugged into what we define as active school transportation. They were thinking about walking and cycling. They weren’t thinking about kids wheeling or other ways of getting there. I can engage policy makers around this stuff, so our kids don’t get excluded from site planning for new schools.

BLOOM: You said that you used to teach a course that included some content on accessibility before Asha was born.

Ron Buliung: I did. But I couldn’t relate to the content in the way I do now. I’ve always been interested in social difference and mobility, but I hadn’t plugged disability into that interest, which was a shortcoming of my own. I was naïve and unable to meaningfully connect with the subject.

Asha is one of my greatest teachers. She reshaped the way I look at the world and that’s a huge privilege.

In my graduate research group, two of my PhD students are working on disability and accessibility. They wouldn’t be doing that without Asha. Asha is the motivation and inspiration for all of this work.

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Rana finds her voice in advocacy

By Rana Nasrazadani

“You’re not ready for university.”

A staff member said this to me in high school, in front of the whole class. These words, from a person whose job was to guide and support students, had a profound impact on me. Sometimes, they still linger.

It wasn’t these words alone that affected me. Staff had discouraged me from pursuing post-secondary education throughout high school. I believe they had a limit about how far I would go. When I pushed the limit, they made it more difficult. I was walking on eggshells. I felt like I had tougher expectations put on me than my peers. The pressure to live up to these standards increased each year, but without the supports I needed. It seemed like no matter what I did, it was never enough.

As a teen with a disability, my life was already quite stressful: appointments, physical therapy and surgeries were not out of the ordinary. I was also on a competitive swim team, practising multiple times each week. On top of this, I was a student with a clear plan to graduate in four years and continue my education.

When the staff member said I wasn’t ready for university, I didn’t say anything. In high school, I didn’t want to show any vulnerability. At the time, I felt I needed to manage the extra pressures related to my disability while making everything look effortless. But in reality, I was struggling.

I started to doubt myself. I had no reason to worry, as I was meeting the requirements to go on to university. But discouragement plays with your self-confidence. I worried about other people’s approval, and more so, their disapproval of my decisions. I began to question whether I should apply to university.

Then I asked myself “Why am I letting this happen?” Far too often, people with disabilities are seen as incapable, before being given a chance to participate as an equal in society. I didn’t need the approval of school staff to go to university.

I had a strong support system of family and friends and their encouragement to reach my goals outweighed those that discouraged me. Without telling school staff, I applied and got accepted to university.

I’m now a student at York University, studying towards a future in human rights law. As a former ambassador for Holland Bloorview, I always knew that I had an advocate in me. More recently, I got involved on the youth advisory committee of the Office of the Provincial Advocate for Children and Youth. I was part of­­­­ the We Have Something to Say Project, which brought together the voices of youth with disabilities from across Ontario to work towards a barrier-free future. I shared my story about some of the obstacles I faced in high school (p. 64).

Four years ago, if you’d asked me if I’d be where I am today, I would have had a hard time believing it. Opening up about these experiences has been very difficult. It took a while for me to gain enough confidence to tell my story on an open platform, but once I was ready, it was like a weight was taken off me.

Over time, I’ve learned that many students go through similar experiences. They feel the need to “cover up” their struggles because of social pressures and ideals. It can feel like no matter what you do, it will never be enough.

To those reading who are going through a similar situation, there’s nothing wrong with saying you’re struggling. Don’t bottle it up. I encourage people to talk about it. Right now it may be hard to see the positives, and it might feel like your situation isn’t getting better, but have confidence in yourself, trust your judgment and keep pushing towards your goals.

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How to work with your child's teacher and school

By Alison Morse

Parents of children with special-education needs face extra challenges in helping their kids succeed at school.

Sometimes we assume that a teacher will automatically know how to teach our child. But every child is different. It’s important for the school to focus on your child’s individual needs—not just what they assume based on a label.

These strategies will help you support your child by taking an organized approach to your relationship with the teacher and school.

Know your child

-Get educated on your child’s strengths and needs so you can speak about them

-Understand your child’s diagnosis and how it may impact learning

-Collects articles and information that may help school staff understand your child.

Understand the school system

-Learn about special education services and programs—and your role—by attending information workshops at your child’s school, the school board or community agencies. The school board’s website is another good source of information.

Develop and maintain a relationship with the teacher

The classroom teacher is a very important person in your child’s life. Maintaining an open and honest relationship means that you can quickly raise concerns and work together to solve them. The following tips are intended to help you with this relationship with the school.

Communicate effectively

Talking about our children is emotional and sometimes we focus on what we want to say without really listening to the other person. Remember to:

-Pay attention and listen to the speaker

-Ask questions about words and procedures you don’t understand

-Repeat information to make sure you understood what was said correctly

-Speak clearly and present facts in a logical order

-Ask for a break or to reschedule the meeting if you become emotional.

Learn to problem-solve and negotiate

The school doesn’t have unlimited resources and there’s usually more than one way to solve a problem. As a parent, you want to show that you will work with the teacher to find a mutually beneficial solution. Try to:

-Brainstorm new ideas without judgment

-Evaluate each idea and identify consequences

-Select best solutions and plan details for how they will be implemented

-Evaluate results and decide whether to continue or to try another option

-Recognize the resource limitations faced by school staff

-Look for areas of agreement and compromise.

Share successes

A healthy relationship with the teacher means that you don’t just approach when there's a problem. You need to celebrate successes and let the teacher know that you recognize their skills and expertise. To do this you can:

-Share good news about your child with school staff

-Thank the teacher for their efforts and be specific in your comments

-Attend school social events and volunteer to help in the classroom or on trips

-Let the school principal and others know when things go well in the classroom.

Preparation and follow-up

Working with the teacher and the school will include meetings, phone calls and e-mails. It’s important to organize the information you have about your child and prepare for meetings. Here are some tips:

Prepare for case conferences and meetings

-Make sure you understand the purpose of the meeting

-Find out who will be attending the meeting and why they will be there

-Take someone with you to help you by taking notes or speaking on your behalf

-Be prepared to share information about your child

Keep records and notes

-Make notes of key discussions from phone calls and at meetings

-Record the names and positions of people involved

-Ask for copies of meeting minutes and other documents

-Keep your notes and records organized in a binder or filing system

Follow-up on phone calls and meetings

-Before the end of the call or meeting, reconfirm next steps, actions and future meetings

-Send a thank-you note with a summary of your expectations

-Complete all the tasks that were identified for your action (e.g. make appointments, provide information, etc.)

-Monitor changes and track progress for future meetings.

Find help in the community

Advocating for your child can feel overwhelming. It's important to remember that you're not alone and many other parents have been through similar situations. As a parent, your knowledge and skills will grow over time. In the meantime:

-Seek out information about your child’s needs and strategies that may help

-Attend workshops or meetings that will provide information or support

-Contact community agencies that provide support to families

-Connect with other families of a child with similar issues.

Alison Morse is a parent of a young adult with cerebral palsy and developmental disability. Alison has been a volunteer special education Advisory Committee (SEAC) member representing Easter Seals since 1992. As the provincial coordinator for special education at Easter Seals Ontario, Alison manages SEAC recruitment, training and support and develops information resources for families. Recently Alison started the blog Easter Seals Kids at School. It already has 50 articles about what parents can do to support students. This post Advocacy: How to deal with concerns at school outlines the chain of command to follow when you're experiencing problems. The tips above were collected from parents and professionals across Ontario. 

Photo above by Jodi Ravn. Holland Bloorview staff will remember the Ravn family, which includes Eric, 11, Alex, 8, and Nicholas, 5. You may remember this BLOOM story written by the boys' father Lloyd.

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What one mom did to get her disabled son on the playground

Andrea Davila is leading a project that’s raised over $500,000 to build a barrier-free playground at Deer Park Public School in Toronto. Andrea’s nine-year-old sons—twins Tomas and Martin Tobin—attend the school and love it. But Tomas, who uses a wheelchair, is unable to get into the current playground (see photo above): it’s bounded by large stepped logs and covered in wood chips. So Tomas sits on the sidelines, watching. Tomas is part of the Intensive Support Program (ISP) at Deer Park, which supports kids with a variety of physical disabilities. “Right now there’s nothing for these kids to play on outdoors, no accessible equipment and nothing they can enjoy,” Andrea says. We spoke about her role in bringing a barrier-free playground to life.

BLOOM: How did you get the idea?

Andrea Davila: A teacher who used to work in the ISP program had an idea to build a $50,000 gazebo with a ramp. After he left I said ‘I think we should continue with this idea’ and I took it to the parents’ association. They said ‘$50,000, are you crazy?’ Nothing that high had ever been raised for a project and it was outside what they usually supported. They started asking questions and when I told them there were only 12 students in the ISP program, they didn’t think the numbers warranted it. I said ‘It’s something that every single kid in the school and community can use.’

BLOOM: How did the project expand from a gazebo to a playground?

Andrea Davila: We found a huge potential space of land that wasn’t being used at the school, and it had great potential. We asked the Toronto District School Board (TDSB), ‘what do we need to do?’ They said you need a landscape architect, a design and a topographical survey. That would cost about $10,000.

BLOOM: How did you raise the first $10,000?

Andrea Davila: Pizza lunches, bake sales and a skate-a-thon. It took about a year.

BLOOM: Who is working with you on the project?

Andrea Davila: Two other parents whose children don’t have disabilities.

BLOOM: Were the other parents of kids with disabilities supportive?

Andrea Davila: Not much. They were interested, but they never showed much support. It wasn’t easy to find volunteers for this project.

BLOOM: Can you describe the plans for the playground?

Andrea Davila: It will have accessible equipment like a rotating climber that is low to the ground; special-needs ‘dish’ swings; and basketball hoops at different levels so kids in wheelchair and regular kids can throw to different heights. There will be an art and music area to support the kids with sensory issues. We’ll have raised sand tables, a wider slide so that a parent with a kid with a disability can support their child, drums and xylophones and lots of trees and areas with natural elements like wood and rocks that are safe. There will be picnic tables that are higher so a wheelchair can go under. The idea is to integrate and include everyone. Our goal is that children of all abilities will play together.

BLOOM: Why did you want to be a part of this?

Andrea Davila: I got inspired by the teacher who wanted to do something for the kids in this program and because of my perspective as a parent of a child with a disability. I knew what would make it barrier-free and easy to access—I knew about the things we have loved in other places. Right now the school doesn’t have an outdoor play area that can engage Tomas in any fun activity. It’s not easy to see every kid playing and having so much fun and my kid just sitting and watching.

BLOOM: What is the cost of the project?

Andrea Davila: The project is estimated to cost $775,000. To date we’ve raised over $560,000. The city of Toronto loved our project and our councillor helped us raise $350,000 from the city. The TDSB gave us $45,000 because for full-day junior and senior kindergarten they need to improve the outdoor area and this project matched that perfectly. The Toronto Eglinton Rotary Club gave us $36,000. And the rest—$130,000—has been raised through the school, including an amazing anonymous donation from a family. We’ve run pizza lunches, a skate-a-thon once a year, two dance-a-thons a year and many bake sales, and the fun fair at the school supported us. Because the project isn’t fully funded yet, we decided to do it in phases. We hope to break ground in spring 2016 with phase one, which is our biggest phase.

BLOOM: What advice would you give other parents wanting to raise funds for accessible playgrounds?

Andrea Davila: Don’t think only about your school, but the community overall, and that includes the elderly. Our playground is a combination of pavement and rubber surface so people using wheelchairs or walkers or crutches can go everywhere. Look for advice from other schools that have successfully raised money. We asked Maurice Cody, which had raised $400,000 to build a turf, and they really helped us. We partnered with The Toronto Foundation for Student Success, which is an independent charitable foundation of the TDSB. They act as financial trustee for the project. They helped us create online donations. We got in touch with an accountant at the TDSB and he created an account so that all of our funds could be in one account. Find lots of volunteers because you can’t do this on your own. And it’s ideal if you can find people with experience in fundraising and marketing and communications.

BLOOM: How do you feel about the success you've had?

Andrea Davila: I think it’s very successful so far, but it’s not finished, and I won’t feel any success until it’s actually built. It’s been really hard work and team work and involved many people.

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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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Why are disabled students singled out for 'chores?'

By Louise Kinross

A few year's back it was suggested to me that a great co-op placement for my son was to work in a school separating the garbage and recycling. My son had no great interest in garbage, or recycling, so I didn't buy the rationale and nuked that idea.

Many high schools have students with disabilities do the recycling as a regular activity. I'm not sure why these students, over any other student, need to learn this skill at school, or why we want to give their peers the idea that students with disabilities have a special passion or proclivity for it? It seems to me that if students are being called upon to do the garbage and recycling then all students should take part.

This morning Ellen Seidman at Love That Max reports on another example of disabled students being singled out for chores that no other students do.

At Big Blueberry Eyes, Michelle learns that part of the curriculum in a self-contained Grade 6 class for her daughter will involve washing the uniforms for the school football team.

"The thing is this: I am not sending my child to middle school to learn to do laundry," writes Michelle. "Especially not the laundry of the football team. It doesn't matter if it happens once a week, once a month, once a quarter, or once a year. One time is one time too many. Even one time is not acceptable."

In addition to the fact that using a washing machine isn't typically on the middle school curriculum, if you want to teach kids the mechanics of washing clothes, shouldn't they have to do their own stinky ones? Why should the sweat-drenched football jerseys be carted over to the special-needs class?

Unfortunately, this scenario reminds me of a parent who went with her young adult daughter with Down syndrome to find out about job opportunities through the Ontario Disability Support Program. They were told that every single job included cleaning a bathroom. Now, bathrooms need to be cleaned, and I don't have a problem with students being given this responsibility. But when we specifically single out students with disabilities, and tell them that for some reason this particular task is attached to the only jobs they are eligible for, something is seriously wrong.

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'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.

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'There is something magical about this place'

By Louise Kinross

Stephen Dustan is a 23-year-old rehab services student doing a placement at Holland Bloorview. He works with life-skills coach Sarah Keenan, meeting youth in the community to help them set independence goals. Stephen knows our hospital intimately. As a child with cerebral palsy he attended our integrated kindergarten program. Since then he’s been an inpatient and outpatient; a Spiral Garden camper and volunteer; a high-school co-op student in our integrated kindergarten (working with his old teacher Paul Alcamo); and he now works part-time as a recreation assistant with our inpatients. One of our family leaders suggested we interview him.

BLOOM: Why did your parents choose our kindergarten for you?

Stephen Dustan: I think what attracted them most was the fact that I would have therapy and be in a place that was equipped to handle my needs. They loved the idea of it being integrated with community kids because that gave you such important skills of being able to articulate your disability to able-bodied kids, which is something you’re going to do lifelong as a person with a disability.

BLOOM: What do you remember about our school?

Stephen Dustan: I remember having my disability explained in a way that I understood and in a way that I could explain it to other kids. My 'go-to' is that my brain got cut-off from oxygen at birth, damaging the way my muscles communicate to my brain. So my muscles are tighter and don’t grow properly like normal kids’ muscles do.

BLOOM: Did that explanation satisfy most kids?

Stephen Dustan: They often gave me a blank stare. It kind of went over their head but it kind of sunk in. I found my willingness to explain it beneficial. Kids are just curious, they’re not mean by nature, and if you provide them with an answer, they usually were pretty receptive and understanding.

BLOOM: What was it like to move to your local school for Grade 2?

Stephen Dustan: The moments when I would feel different from the class were when everyone was getting ready for recess, especially in winter, and it would take me longer, so I’d have less time outside to play. Getting an educational assistant in place for me was difficult and took some time. But I was good at self-advocacy and stating my needs. So I asked whether I could get ready five minutes earlier than the class. My disability was never an issue for me socially. I have an older sister and I had the support of her and her friends so the kids in my class gave me respect. I always had friends to confide in and rally around me. It wasn’t until Grade 8 that I experienced some bullying.

BLOOM: What happened in Grade 8?

Stephen Dustan: I did my last year of elementary school in a new school that opened in my neighbourhood, so I was starting again without friends. I fell into a group of friends that were kind of mean to each other and very political. I did experience some bullying and I definitely can relate to the isolation that that causes: the feeling of not wanting to go to school; hearing whispering and thinking it’s always about you. I told my friends and parents but I never got the authorities involved. I waited it out until high school and it got a whole ton better then. I remember on the first day of high school I was really nervous and I came through the doors on my scooter and there were three of my old friends from elementary school and instantly I knew that it was going to be fun.

BLOOM: What is your university program like?

Stephen Dustan: I found this York/Seneca rehab program where you get your BA in psychology, which I now have, and then a certificate in rehab services. It’s a general program that covers all aspects of rehab. What I like most is that I had the opportunity for field placement.

BLOOM: What did you do as a placement?

Stephen Dustan: Two years ago I worked with The Centre for Dreams, which is a day program for adults with developmental disabilities in Markham. I worked with clients on social goals, life skills, self-care and vocational skills. I had never worked with clients with developmental disability and it was a really great experience. I got a new appreciation for how honest people with developmental disability can be, how kind they can be, how open hearted they can be. It was a privilege to work with the clients and the staff.

BLOOM: What are you doing in your placement here?

Stephen Dustan: I’m in therapeutic recreation and life skills working in the community with Sarah Keenan. I’m learning about the life skills process, the different ranges of goals that clients set and how to achieve these goals. It’s very solution-focused.

BLOOM: Have you found anything about the work surprising?

Stephen Dustan: I knew I would like it, but the amount I like it surprised me. Life-skills coaching is definitely something I could see myself doing and having this experience with Sarah helps me in my job as a casual staff on the inpatient unit being a recreation assistant. I can apply what I’m learning to both situations.

BLOOM: What is your favourite part of the work placement?

Stephen Dustan: I love the element of counselling and coaching and being a part of someone’s development. My future goal is to pursue a master’s in social work and get into counselling.

BLOOM: Does it seem unusual to you that you spent so much time here growing up and now work here?

Stephen Dustan: Holland Bloorview was such an integrated part of my life. I never had any negative feelings around this place. For example, I didn’t connect it to the more traumatic elements of my recovery after my surgeries when I was an inpatient here. It was physically painful to do rehab, but it wasn’t emotionally painful or painful in a way that would make me not want to come back.

BLOOM: How would you describe Holland Bloorview?

Stephen Dustan: It’s incredibly unique and alive. For me it’s been a place of recovery and opportunity and it still is. There is something magical about this place, especially the Spiral Garden program. I went there when I was little and I later volunteered there. They’re phenomenal at putting this element of imagination, of magic, into a place that traditionally shouldn’t have any. From my time working at Spiral Garden and on the inpatient unit in general I’ve come to see the amount of work and organization that go into creating that recreation hour with the clients gardening. How many people pour their heart into what they’re doing, the amount of organization and heart and energy it takes.

BLOOM: Has your view on disability changed over the years?

Stephen Dustan: When I was a kid I always had this idea that you’re not disabled, you can do anything a normal kid can do it will just be a bit more challenging or you’ll do it differently. That helped me tremendously as a kid, but now as an adult I can recognize that it’s not a matter of me not being disabled. Disability can be an identity, a social identity. So much of my strength has come from 'being disabled' that I no longer see it as a weakness or something you have to distance yourself from or deny. It’s something you can accept and in some ways celebrate.

BLOOM: What are some strengths that have come from your disability?

Stephen Dustan: I think there’s a depth, an internal space that I have to hold things, to connect with people, to understand people’s struggles and emotions. Because I’ve been placed in intense situations that most people don’t experience, I’ve got insight into where strength and hope come from when it’s really dark. I know that that light is inside everyone and you have to find it and if you can relate to it in an authentic and real way, you can make that light brighter in yourself and in someone else.

BLOOM: So disability isn't something you need to 'overcome?'

Stephen Dustan: No. I’ve done a few disability studies courses that opened my eyes to the idea that disability is really a matter of social barrier and not a matter of something being biologically wrong with a person. It’s not about overcoming tragedy. It’s more about transforming tragedy into triumph, but not in the sense that you move past it or get over it. You accept the disability with such wholeheartedness that it no longer is something that impedes you on your path.

BLOOM: What was it like to come back as a placement student in the integrated kindergarten you had gone to as a young child?

Stephen Dustan: So many memories that were foggy came flooding back. Paul is exactly the same in every way I remember him. He still gets the most stoked about dinosaurs of anyone I know. I remember as a student I knew every dinosaur’s name and now I can see why I was so passionate about that topic—because Paul was.

BLOOM: What impact do you think you had on the kindergarten students when you came back?

Stephen Dustan: I hope they can see themselves in me and we have that connection. It’s the idea of 'Hey, I made it, I’m doing well and you can too.' I hope they take from my example that they too can be a part of this world in a real and authentic and powerful way. I try to remind myself that I’m a role model and to hold myself accountable to that.

Here's a photo of Stephen as a co-op student in the integrated kindergarten. By Paul Alcamo.

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The big picture

By Sandra Joy Stein

The note announcing picture day came home in my son’s school folder.

“Wow,” I thought. “Look how far we’ve come.” The fact that my son attends school at all is quite an accomplishment. It wasn’t until three years after the onset of his autoimmune encephalitis—where the immune system attacks the brain—that we received medical clearance for him to participate in an educational program outside of hospital or home. After considerable work to get all the necessary systems in place, for the first time since his illness he was now attending a barrier-free neighbourhood school, accompanied at all times by a nurse.

I was occasionally thrown by how immediately his entry to school brought many ordinary experiences to our extraordinary lives. He had homework; I received emails from the PTA; I signed permission slips for fieldtrips. And now, it was picture day.

I picked out an outfit, lamenting that on that particular day I did not have the requisite time (or patience) to engage him in the choice. I sent a back-up outfit, should vomit or drool sully my original selection. As the wheelchair lift was raising him onto the bus, I made a request to his nurse. I had recently seen class pictures in which a group of currently able-bodied children stood clustered in the centre of bleachers with the one child who uses a wheelchair positioned to the side of the bleachers, separate from the class. 

I find these images to be unnecessarily isolating to children who work tirelessly to participate in a world that has not been designed for them. I suggested that if the whole class were posed in such a way, with my son off to the side, to please ask for an alternative arrangement. She agreed to raise the issue should it come up.

Mid-day I received a text message from the nurse informing me that for the class picture they took my son out of his wheelchair and his teacher supported his head and torso so he could sit with the rest of the children. That made sense to me since they do take him out of the chair to sit with the other children regularly and his head and trunk control have improved enough over time that with a little input from an adult, he can sit in some of the classroom chairs safely. In the class picture, he would be right beside his peers, a full member of the classroom community.

But then came a second text message: “Solo pic was in his wheelchair but they’re gonna photoshop his headrest so you can’t see it.” I felt a lump in my throat. I had asked that he not be isolated from his peers in the class photo, not that his individual shot omit all traces of his illness. Who thought we would not want to see the headrest of the chair that has become the means for our son to move around in the world? I thought to write back immediately saying: “He uses a wheelchair. It’s fine. Keep it in the pic.” But I often find that taking time after my initial visceral reactions leads to better outcomes. So I waited for my husband to come home to discuss it with him.

My son loves having his picture taken. At times, when his body is behaving in ways that seem beyond his control, I hold up my cell phone to snap a selfie of the two of us. Upon seeing our image on my phone he often focuses, calms, and mugs for the camera. It’s a phenomenon I cannot begin to understand, so I don’t try. I have several pictures of the two of us, looking right at the camera, smiling together as if someone just told us to say cheese. When I post these pictures on Facebook, I comment that they are from the “If you didn’t know you wouldn’t know” files because there is not a visible trace of the three years my son has been battling his disease. 

I am admittedly more likely to post these pictures to Facebook than the ones where the visual effects of the disease—the deviated gaze, the open, drooling mouth, the protruding tongue, the asymmetrical facial expressions, the blank stares—are visible. I have justified this tendency by looking at the postings of friends’ kids whose childhoods have thus far not included disabling diseases. We all post what we believe to be the most attractive shots of our kids, the ones where they look happy and loving and impish and proud…right?

But the thought of any part of his current state being photoshopped out of a professionally taken picture disturbed me. I told my husband the story and he had the same reaction. Our son used to walk on his own. He does not now. He may or may not walk again someday. In the meantime, there is no need to photoshop any aspect of his current state out of visual existence. 

We wouldn’t want the photographers to airbrush in a smile that his facial muscles didn’t authentically produce or paint the missing teeth back into his mouth. In fact, we wouldn’t want them to change a thing about his picture, as it is a snapshot of his incredible life as it is today. There is nothing about the physical imagery of his journey that brings us shame. Quite the opposite, he is a powerful testament to resilience in every image we capture of him with or without the wheelchair, the drool, and the varying facial asymmetries. He is our son and we stand in awe of his beauty.

I texted the nurse that night asking if she happened to get the photographer’s contact information so we could communicate that we do not want any photoshopping of our son’s picture. She informed me that they would be back to the school the following day and she would let them know.

The next day I received a text from her: “Spoke to photographer. He is leaving headrest in.”

I noted how the attention I was able to give to this issue served as yet another indication of just how far we had come. I was not at this moment suctioning the trache he used to have. I wasn’t watching the alarming ICU monitor while a medical team ran in to resuscitate him. I was not making an impossibly hard decision about medications or surgeries. I was asking that the wheelchair headrest captured in my son’s school picture not be photoshopped out, the health equivalent of a first-world problem.

Sandra Joy Stein is an education and leadership consultant, writer and poet who lives in New York City.

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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.

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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.

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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.

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Sad mama bear

By Sue Robins

In the health system, I’m an advocate for Aaron, my son with Down syndrome. I’m prepared, articulate, and know how to persistently and politely lobby for changes in his care.

But usher me into the school conference room for a meeting with principals and teachers, and I turn into a blubbering mash-up of tears and rage. I’m a mama bear, to be sure, but a shrill weepy one. My rational and eloquent advocacy with health professionals flies out the principal’s window. I walk out feeling defeated, overwrought, and with a vulnerability hangover.

Upon reflection, I think it’s because when I was a student, I was a nerd girl, a library girl, and a good student. I got into trouble only twice in 12 years: once it was in Grade 8 when I was caught red-handed by Mr. Matwichuk reading the book Endless Love in social studies class.

But for my son with Down syndrome, who is only 10?
  

At least once a week, there’s a phone call or text from a teacher, principal or assistant about his “behaviour.” There are formal meetings in the school office or impromptu discussions held in his classroom after school, where I’m crammed into his chair, my knees bumping up against his desk.

In those moments, I feel very small. I am that 13-year-old girl caught red-handed with a semi-soft-porn book in my class (what was I thinking?). But this doesn’t happen twice in 12 years; it’s a weekly ritual. Each time, I feel my face flush and my heart beat faster, and immediately I’m teetering on the edge of that cliff, about to lose it.

Nobody calls me in the middle of a work day to tell me what an awesome kid my son Aaron is. How he’s learned to count to 100 this year, and how his reading skills are blossoming. (I do get that lovely feedback from the teachers, thankfully).
  

The calls are always about behaviour and it’s always labelled “bad.” I talk about how behaviour is communication. They talk about how behaviour needs consequences. By the end of the conversation, I want to stand in the corner with a dunce cap on my head.

All I want for Christmas is to walk into the school with my health-advocacy hat on, the one that allows me to use my voice effectively and speak rationally about what I want for my boy. And for once, just for once, I don’t want to cry in a school meeting. I am the saddest mama bear that you ever did see.

This post was adapted from a piece on Sue’s blog. 

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