'Foolishness' plays a critical role in rehab

By Louise Kinross

The ‘fool’ in Shakespeare’s plays and the ‘trickster’ in Indigenous stories held an important role in upending the status quo. A Holland Bloorview paper published this week in the Journal of Medical Humanities notes that the foolishness of therapeutic clowns—their emotional vulnerability and willingness to fail—is at the heart of their work with hospitalized children, producing a ‘joy without demands.’ Clown practices, however, are often seen as ‘secondary to the real work of medical professionals,’ and devalued.

Lead author Julia Gray, a post-doctoral fellow at Holland Bloorview, argues that all clinicians and researchers could benefit from embracing aspects of foolishness in their own work. BLOOM interviewed Julia about the paper, called Seriously Foolish and Foolishly Serious. It looks at how clowning creates a space of vulnerability, surprise and the unknown in which children feel agency, as well as the freedom to express sadness, despair, pain and delight. This spontaneous, undirected, flexible practice isn't usually taken seriously in a medical world grounded in science, expert knowledge and quantifiable outcomes.

BLOOM: Why was there a need for this paper?

Julia Gray: It came out of things I was observing anecdotally about the clowns’ role at Holland Bloorview, and in other hospitals, and reading in academic literature about how clown practice is framed. I was seeing a strange tension between admiration for the clowns and an attempt to legitimize them by framing them as a medical practice. They had to have certain kinds of medical goals, or be supporting the medical goal of other professionals.

As an artist and scholar myself, it seemed such an odd way to try to legitimize what they do. The arts do things that may complement medical goals, but they also do other things: they help us be in the world, they help us feel things, they help us see things differently, and they help us see ourselves differently. Those [experiences] are really important in a health setting, but they tend to be overlooked generally, in practice and in research.

BLOOM: What kind of knowledge has traditionally been valued in children’s rehab?

Julia Gray: Science tends to be valued, and particular kinds of science—objective research.

BLOOM: So quantitative over qualitative research. You also wrote about “high knowledge.”

Julia Gray: Yes. It’s quantifiable, an intellectual prowess that is valued, reasoning. It comes out of the Enlightenment, and the roots of scientific method are revolutionary and incredibly important. But when you value that over other ways of being or knowing, it has the potential to exclude people who may have different abilities and strengths.

BLOOM: You wrote about how foolishness is central to the role of the clown. Why is emotional vulnerability, and a willingness to fail, important to hospitalized children?

Julia Gray: Our rehab practices are continually encouraging them to be independent, and that independence is where strength is, as opposed to being vulnerable. They’re supported to be a certain kind of ‘strong.’ That has implications for how children with disabilities see themselves. Some of them are never going to fit that mould.

Rather than pushing children to fit a particular mould that we understand to be success, we need to think more about what ‘that success’ is? At a philosophical level, it asks us to question what it means to be a human being. Is being independent and self-sufficient valued, above all else? Is it holding down a particular kind of job that makes more money? Or is being playful and joyful enough?

BLOOM: One of your co-authors, Barbara Gibson, is a physiotherapist, which is a more traditional clinical role in children’s rehab. As authors, you note that typically, play in children’s rehab is not an end in itself. It’s always tied to a therapy goal or achieving a developmental milestone. Why is this problematic?

Julia Gray: I think it comes back to what does it mean to be human? Is it not enough to play? Why do we need to use play to control development and decide what is 'normal' or 'abnormal' play? I sometimes think medical culture gets it backwards. These artistic therapies and practices are seen as a way to fix people, rather than as a way to support kids, so they can be in the world as themselves.

BLOOM: That approach can also take all of the joy out of life. I remember when every interaction I had with my young son had an agenda—I was trying to get something out of him, rather than enjoying the moment. And if I wasn’t successful, I felt like a failure.

Julia Gray: There’s this pressure to always be better, but we don’t question what better is.

BLOOM: What if better is happier, and has nothing to do with abilities?

Julia Gray: What if better is chilling out in a bath?

BLOOM: You note in the paper that hospital clowns are often misunderstood. People think they provide simple laughs or positivity, when what they do is actually very sophisticated. You include an example of an interaction between a nine-year-old patient, Daniel, and Helen Donnelly, a co-author, who is a therapeutic clown at Holland Bloorview known as Dr. Flap.

Daniel, who uses a ventilator, accuses Dr. Flap of lying about the death of Jamie Burnett, who was a therapeutic clown at Holland Bloorview. He worked with Dr. Flap until he died of a brain tumour in 2011. Why did you choose that example?

Julia Gray: I wanted to show how the child drives the boat, and Helen really follows his lead. Helen doesn’t balk at what he’s putting forward, when he challenges her. It’s really brave for a child to challenge an adult, and accuse her of lying. She doesn’t try to take control by saying ‘No, no, I’m a serious adult. I know what’s best.’ She follows his play, and lets him lead. She makes herself very vulnerable. She recognizes the importance of not always talking and being clever and being in control.

BLOOM: You write about how fool-like characters historically played an important role in challenging the status quo. You also share examples of how scientists and research students, here and in other rehab facilities, reacted to learning you were researching clowns. They felt uncomfortable and hesitant. In fact, one colleague said she was afraid that if she encountered the clowns, they might make a fool of her. Can you explain?

Julia Gray: Our culture really values high intellect, certain kinds of expertise, and being in control, and the clowns do not offer that. They are constantly playing low status. They relish in being ridiculous and weak and failing all over the place.

That kind of exposes the ridiculousness of how seriously people take intellectual control. It has a place, and we have discovered all kinds of amazing things. But even in science, you need creativity, and there’s so much ‘not-knowing.’ It’s ironic that people get nervous around the uncertainty and not-knowing that the clowns bring.

BLOOM: That’s so interesting, because now I think about it, I remember a couple of times I was having a bad day, and I saw the clowns in the hall, and thought: ‘Oh no, I hope they don’t see me. What if they engage me, and I don’t know what to say? What if I don’t understand the characters they’re playing? What if I can’t say anything, or be cool?’

Julia Gray: People think they need to be funny, and that it’s about wit and intellect. It’s not. It’s about imaginative play, and you don’t have to know anything. You don’t have to know.

BLOOM: How does our focus on science and high intelligence and professional expertise potentially impede creativity and more flexible ways of thinking about disability?

Julia Gray: When there’s an emphasis on a particular kind of knowledge as being more valued, it delegitimizes another kind of knowledge, which comes from people’s experiences and feelings and emotions and senses. For example, clients are constantly being asked to articulate their goals in rehab, but only in certain ways. We say we’re being client-centred, and doing what the client wants. But we expect them to articulate those goals in a way that fits with a world where independence and productivity are valued.

BLOOM: There was an interesting quote related to that in your paper. 'Rehabilitation functions in tandem with efforts at home, school, and community to secure children’s futures as productive, contributing, autonomous and ‘normal’ adults.' I’ve always said that in mainstream childhood, parents don’t talk to their children about goals. It’s a clinical concept.

Julia Gray: I never sit down with my able-bodied kids and talk about what their goals are for their own bodies. I tell them to go outside and play. When a parent is trying to get a child to do things that will make them more 'productive,' it shapes the whole relationship. This opens up questions about what the purpose of rehab is? When we value independence and expertise over other ways of being, it influences our practice. Could we support kids to be who they are in a variety of ways?

BLOOM: There’s a brilliant line in your paper that I want to read. ‘There is little room in the serious scientific aspirations of contemporary rehabilitation practice and research for risking failure through creative experimentation, promoting pleasure, supporting alternative ways of being and doing, particularizing care, and/or thinking about people differently.’

I read that, and I thought: That’s why we don’t do more research on really complex populations. For example, we usually study youth with disabilities who are employable in conventional ways. Why don’t we research youth who will live unconventional futures, and who won't be able to do paid work? What do they do? What kind of a good life is possible for those people? I think we don’t go there because we don’t want to enter into a field where we don’t know the answers. We don’t know how things are going to look.

Julia Gray: And it probably won’t show what we consider productivity to be. We’re more comfortable celebrating certain kinds of successes, but what do we mean by success? We’re in a time where we have to account for every dollar spent, and if there’s money going to help kids be successful in particular ways, we have to account for that. If they’re successful in other ways, you can imagine people saying ‘But how is that going to help the economy?’ All of this is situated in our larger culture and its expectations. Those expectations really limit us, because we don’t critique what we even mean by success or improvement. Why do we need to improve?

BLOOM: Maybe a goal for a child is acceptance, so they feel good about themselves. Your paper resonated with me because I’ve felt a lot of discomfort with how we promote the academic exclusivity, or high intelligence, of our research work. How does that fit with our vision of inclusion?

Julia Gray: We are heavily academically inclined. We are measuring particular kinds of successes and experiences—largely through marks.

BLOOM: Yet some of our population, due to intellectual disability, can’t be successful in academics. You suggest that all rehab clinicians and researchers can enhance their practice by incorporating foolishness into it. What might that look like?

Julia Gray: My son used to take violin when he was 6, and one day, after about five sessions, he showed up and said ‘I don’t want to be here,’ even though he was the one who'd asked to take lessons. The teacher said ‘Okay, maybe we don’t need to practise bows and techniques. Why did you decide you wanted to take the violin?’ 

He said he thought it was a cool instrument. She said ‘Let’s take a look at the instrument,’ and that’s what they did for half an hour. They talked about the different parts of it, without playing it. If the teacher had had in her brain ‘I must teach technique and I have these goals,’ she would have pushed him away and he would have been even more annoyed. She knew that her relationship with him, and with music, was more important than holding the bow in the correct way.

BLOOM: One of the messages in your conclusion is that relationships, and activities that spark happiness, in the moment, with children, are as important as clinical outcomes.

Julia Gray: Therapy and physical function, and relief from pain, are incredibly important, and have a very important place. But it's also important to think about why we focus so much on improving in rehab? What are we improving? What is our understanding of betterment? Why do clinical outcomes take priority over a child being in a good way with a person in a space—being in a good relationship? Isn’t that, really, what life is all about?

BLOOM: What do you hope professionals take from your paper?

Julia Gray: I appreciate they’re in a tough position. We’re in a culture where the pressure is to be ‘better.’ That, according to the funding, is the point. They need to be able to show particular outcomes to justify their practice. Many feel very torn about existing within that structure that pushes them to practise in particular ways—ways that may sometimes be harmful. I don’t know what the answer is. I think we need to rethink what we value. What is valued as ‘better?’ What is valued as ‘improvement?’

BLOOM: What message do you hope parents take?

Julia Gray: To recognize that therapy, or betterment, or improvement goals or practices, can be totally overwhelming, and overtake your relationship with your child. Maybe there are ways to resist that by just being. And playing. Being silly, and sitting in the sun. Try to prioritize that, and remember that the parent and child being together is enough—as opposed to the parent being the fixer.

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'We don't want to be held on leashes'

By Jadine Baldwin

As a 17-year-old girl who has cerebral palsy, every day I encounter teens with a variety of abilities and disabilities. The Limited versus the Limitless!

Society tells people like me that we’re limited because of our disabilities—mental or physical—and that because of what we’re lacking, we’ll never be able to live a full life. This can be disheartening for parents and guardians to talk about and process with their disabled children. For this reason, parents are afraid and unsure about how to support us when we become teens and even adults. They’re scared to let us “be free,” because all along they’ve been told to keep us close, or the world will eat us alive.

Parents don’t understand that just because we’re made differently from “normal” teens, doesn’t mean that we don’t want to experience life like normal teens. We want to go to the movies with our friends alone, we want to stay home alone, and we want to try the things we're constantly told we can’t do. We don’t want to be held on leashes. It doesn’t matter if we’re verbal or non-verbal, we can understand what it means to live a good, quality life.

We just need our parents and the ones we love to help us along the way.

I have a very close friend who’s my age and autistic. He’s super smart and funny and I feel so alive when he's in the picture. He and I have known each other since Grade 9. He understands me, and I understand him (like no one else does, as he says). Even though his parents have known him for 17 years, he tells me that it still feels as if they’re “newbies” sometimes. They know that he needs a simple and easy-to-understand structure in order to grasp this complicated world. Yet they still confuse him by putting too many minor details into a task or question, and that throws him off.

Sometimes, people don’t realize that simple is how everything begins. Simple love, simple feelings and then you gradually can start to think deeper. My friend’s parents are smart, my only advice to them is: Give your son a simple tree and he can make it grow into extraordinary things, all on his own. Just give him time and your support to let him know that you're ready to see the world through his eyes.

“I want to talk to you, Daddy...but the words won’t come.” That’s what it feels like to be a non-verbal child. Because they can’t voice their own opinion, you guys as parents have to speak for them. I’ve met so many parents with non-verbal children and they treat their kids so well—like actual human beings—not robots.

Although it’s great that you’re treating your child like a human being, I find it a little silly that in trying to make your child seem more than what society sees them as, you, in turn, make them feel less by focusing too much on society and not on them.

It’s hard to speak for your child if you don’t know how to stop talking and listen to them, instead. Parents, your children need to know that you are hearing them as much as you are fighting for them. Just listen!

For parents of children who don’t have a reliable communication aid, talk to other parents, and see what worked for their child, to give you motivation and inspiration. Don’t give up.

Being a child with cerebral palsy is great—if you don’t have parents that smother you! My Mom does exactly that! I bet every teen who has CP has experienced this in one way or another. Our parents think that we're little and can’t handle the “big” because that’s what many doctors have told them. So, they don’t leave you home alone for more than five minutes (especially if you’re in a wheelchair).

Some parents won’t let you go to sleep-away camps with other disabled kids until you’re 17 (my Mom)! They always think that people are out to get you. We love them more than life itself, but it gets so crazy sometimes. I always think, Mom, my friends are not murderers and if they were, I’d be dead already.

In my opinion, our parents forget how tough we are because sometimes we don’t look it. If your child has CP, please do not smother. Please don’t tell us that we can’t handle life, because we were built for it. Please let us live (a little more).

Dear parents of disabled teens: We appreciate you and love you! We aren’t telling you that you can’t worry about us. You’re supposed to. We’re simply saying that you need to support us with what our futures hold, not hold us back. We need to soar, but that doesn’t mean that we won’t come back home. We may need help along the way, but we need to explore. That’s what life is meant for, isn’t it?

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'Superhumans' ad takes the fragility out of disability

By Louise Kinross

My husband loved this 'We're The Superhumans' ad about the British Paralympics team as well as everyday folks with disability. It was produced by UK broadcaster Channel 4.

I wanted to like it, I really did. But while I got caught up in the Broadway style show and the catchy "Yes I can" cover, something about the "I can do anything" lyrics, when paired with elite athletes as well as regular folks with disabilities, who just happen to be independent, didn't sit right with me. 

Most of the adults and children in the ad have amputations and they've adapted by using a different limb or a prosthesis.

This is how a story in Advertising Age described it: "Paralympians make high jumps, score goals, lift barbells and shoot arrows while everyday folks pump gas, take notes, eat cereals, fly airplanes -- just as easily as their counterparts who happen to have arms and legs would." 

Is that statement true?

Is it "as easy" to do competitive sports and everyday activities with a disability as without one? Isn't that a ludicrous over-generalization? And just how are we defining "disability?"

One of the everyday Superhumans featured is Jessica Cox, the first armless pilot who flies with her feet on the controls (she's an American, by the way).  She's able to fly the plane with her feet because her physical disability is singular -- she was born without arms. What if she also had low or high muscle tone that limited use of her feet, or chronic pain, or an intellectual disability? Would flying be so "easy" then? 

What kind of expectations does this ad set for all people with disabilities, including those with multiple disabilities? The ad suggests that disabled people can do anything AND that they can do it on their own. All of the everyday Superhumans act independently. Most have amputations, and we see how they play a guitar, steer a car, drive a plane, care for a child and pump gas with their feet. 

What about people who have conditions that affect many parts of the body and their ability to function? What about people who require help with bathing, dressing, toileting, moving in their wheelchair or communicating? What about people who require round-the-clock care? How do they fit into this "I can do anything" realm? 

They don't. That's why they don't appear in the ad.

"Being a Superhuman is a state of mind," says the ad's creative director. "It's time to stop focusing on disability and focus on superability instead." 

What? Is a physical environment designed for bipeds and not wheelchairs or walkers a "state of mind" on the part of the disabled person? Are unconscious biases against disabled children detected during implicit association testing in adults a "state of mind" in the children? What about North American health protocols (I imagine they're the same in Europe) that bar children and adults with disabilities from admission to intensive care during a pandemic? 

Disabled people have historically been stereotyped as "less than" human. This ad, pairing some of Britain's finest athletes with everyday disabled folk who are independent, suggests they are Superhuman. 

Will people with disabilities ever be allowed to just be human, in its full spectrum, which includes different degrees of interdependence and dependence over a lifetime?

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A trip to Disney without parents spurs independence

Today's Parent Magazine produced a beautiful video about two children who were part of a group of over 30 kids from Holland Bloorview who went to the Walt Disney Resort in Orlando for a day with volunteers. The event in April was supported by the Sunshine Foundation of Canada. For some kids it was their first time away from parents and first trip on a plane.

Tomas Tobon (above left) with volunteer Daniel Scott and his twin brother Martin are interviewed about this magical day where they got to make all the choices. 

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Sister turns step-by-step picture stories into life-skills app

By Louise Kinross

Growing up Nadia Hamilton drew pictures and instructions to help her brother Troy, who has autism, do things around the house. “These were handmade social stories before we knew what social stories were,” she says. “We knew he benefited from a visual guide that was a structured breakdown of an activity.”

Today Nadia is the mastermind behind MagnusCards—a free mobile app that allows users to collect and create decks of cards with images and text that walk them through each step of any everyday activity, from watering the garden to ordering pizza. “It’s a digitized version of the life-skills game that we used to play at home.”

BLOOM interviewed Nadia to learn more.

BLOOM: How old is your brother and how did he inspire your app?

Nadia Hamilton: Troy is 26. When he left high school, the safe, predictable structure of school, the routine of friends and teachers every day and the opportunity to continue to learn and develop was ripped out from underneath him. It was a feeling of being pushed out and isolated and no longer accepted.

Troy and I are very close and I’d started to think ‘What are we going to do? How do we continue to support him to be an active member in society and to live with more independence and inclusion, even if we’re not around?’

I was sitting at a computer desk at the University of Toronto and thought ‘What if there was a way to gamify what we did on the wall of our apartment to help Troy? For example, I’d draw the visual steps of how to brush your teeth and we’d put them on the wall above the sink.

BLOOM: What is the purpose of MagnusCards?

Nadia Hamilton: We want to change the way people with cognitive special needs live their lives in society. We want to improve the way they live after high school, when they fall off that cliff. We are leveraging technology, because most people with autism and other special needs grew up gaming, to create the ultimate strategy guide for life.

BLOOM: How does it work?

Nadia Hamilton: It can be used on anything with a screen. It’s a card collection game with a special character named Magnus. Magnus is the Super Mario of the autism community. He’s a wizard who’s lost his powers and has to learn how to live in the world without magic. He used to be able to snap his fingers to do life skills. Then one day his power didn’t work.

Magnus teams up with the user to collect card decks with step-by-step instructions for a variety of life skills. It could be a deck of cards on how to take the bus, how to go grocery shopping, or how to take your medication. As you collect these decks you’re building a handheld life skills library you can take with you in the palm of your hand.

Parents and users and educators can also create custom cards by loading up their own photos and text to meet the individual’s learning style with images that are familiar.

Magnus walks through the card deck with the user and awards points. This positive reinforcement not only encourages skill practice and mastery, but encourages the individual to view something that may seem irrelevant, like vacuuming, as relevant.

BLOOM: How did you create the app when you’re not a developer?

Nadia Hamilton: I have a political science background and this is completely a labour of love. I’m not a programmer but I’m a total nerd and I do have the ability to manage someone to program.

I outsourced the development to China for the alpha version. Then I went to Centennial College and asked their research and innovation lab to help me develop and test the next version. They were a fantastic help.

Then we were invited to be part of an incubator program in Waterloo called Communitech. They not only helped me to build the company but to get access to key mentors and training. I don’t have a background in business but I’ve had the most patient and insightful mentors.

BLOOM: How are you able to make it available for free?

Nadia Hamilton: We have a unique business model where corporations create branded deck cards as annual sponsorships. The corporations pay and our users access it for free.

So, for example, my brother loves pizza, he’ll eat it two times a week, but he’s never ordered it on his own. So we went to Pizza Pizza to create a guide to their services and how to order. The Royal Ontario Museum made a deck on how to go to the ROM, how to get a ticket, what to do if you get stuck or lost.

We’re partnering with one of the big banks in North America who will use MagnusCards to train employees to work in the mail room and in other areas of the bank.

The corporations get to engage the special needs market and to learn more about this large demographic of society. We want to turn every space into a welcoming space for people with special needs where the message is ‘You can work here, you can add value to our institution or organization and we value you.’

We’re just about to start working with our first school system.

BLOOM: Who uses MagnusCards?

Nadia Hamilton: We have people with a broad range of abilities. We’ve done testing in partnership with the Geneva Centre for Autism and Autism Ontario. We have people with Down syndrome and acquired brain injury using it. Our users range in age from six to 65. The parent or individual can decide what they want to learn, how they want to learn it and fashion their own tool.

Troy’s favourite category is the health category. Every day at 1 he grabs the iPad and goes and does his exercise routine which we created, using weights and an exercise bike. He even uses the cards to take care of the garden. I walked my dad through how to create a card deck so that he didn’t have to be there.

We have users in 27 countries, including India, Pakistan, Vietnam, China, Australia, the UK and Ireland.

Troy is our lead product tester. Any time we think about instituting a change he runs through it for us on his iPad.

 

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Letting go

By Madeleine Greey

“Okay ladies, here’s your homework. Figure out what you’re willing to let go of. Make a list. Then prioritize it over the first year of your daughter's independence.”

Gulp.

I looked over at Margaret and her jaw hung in awe.

I locked eyes with LIGHTS senior facilitator Laura Starret who had just dropped this bombshell. She returned my glare with a happy little smile that said “Good luck with this one!”

It’s that happy little smile that kept us going.

Margaret and I—two single moms—had signed on for a momentous task: assisting our adult daughters into supported independent living.

My daughter Krystal, 25 (above right), has Down syndrome. Her roommate Karen (above left) is 26 and has Kabuki syndrome. Both young ladies are bright, able, courageous and developmentally delayed. They knew they wanted to move out of home but couldn’t do it alone. Via LIGHTS—a program in partnership with Community Living Toronto that supports innovative housing options for adults with intellectual disabilities—our two families connected and figured this out.

LIGHTS is dubbed a Match.com for parents planning independent living for their adult children and on a cold, winter evening last year, Karen and Margaret, Krystal and I, all found ourselves at a LIGHTS meeting facilitated by Laura. In fact, we collided on a bulletin board. Each of us had placed a neon-coloured stickie on the “ready to move out in six to 12 months” section.

Krystal and Karen had attended the same high school and while they weren’t really friends, those stickies got them wondering if they could be roommates. They wanted so many of the same things, like a downtown, east-end apartment with laundry facilities that was walking distance from the subway and grocery shopping. Plus, they wanted a third roommate who didn’t have an intellectual disability but was their peer—someone who could be a role model and mentor and was interested in getting free rent in exchange for about 10 hours of support every week.

How did they know this you might ask? The answer lies in umpteen LIGHTS meetings, incessant planning and lots of visualization. 

Pragmatic and impatient, I found this process maddening, but did manage to spot magical balloons of progress float and pop along the way. Laura knew just what to say to get both of our daughters talking—unleashing a torrent of ideas, fears and dreams that neither daughter would have felt comfortable sharing had Margaret or I piped in. We all learned to listen and wait, until that fateful day in June when it was time to start hunting for an apartment.

PadMapper.com became our best buddy. An aggregate search engine, PadMapper provides listings in the neighbourhood of your choice. We got to know the rental market quickly. Seeing the apartments made it less abstract for Krystal and Karen who were better able to say what they liked and didn’t when standing inside the real thing. The more we looked, the better we knew what we wanted.

Laura had warned us that the process would jump into second—if not third or fourth gear—once we started hunting for an apartment. Margaret and I were quickly overwhelmed with rental applications, negotiating leases, credit checks and securing tenant insurance. It was a steep learning curve that landed us a lease on September 13th for a three bedroom, renovated duplex apartment a block away from Woodbine subway station. It seemed only apt to call it KK House (in honour of Krystal and Karen).

But KK needed their third roommate before they could move in. We started an active email campaign posting our ad throughout the disability community, U of T Housing, plus colleges offering disability studies or support worker programs. CVs began to roll in and we conducted half-a-dozen interviews at the dining room table of the yet-to-be furnished KK House.

Maggie, our chosen mentor, is a York grad student with no background in disability. She's into theatre and English and is a dramaturge and playwright. She found out about the job through her church.

On Halloween, Krystal, Karen and Maggie moved in. They doled out trick or treat candies to their neighbourhood’s little goblins and started to get to know each other over dinner. Boxes were unpacked, milk and butter went in the refrigerator and posters went on the walls. Margaret and I had done our homework and knew what we were ready to let go of. Everything was planned out but nothing had been put into motion until that night.

Of course, things were bound to happen once the independent living began. The smoke alarm went off, the toilet handle broke and there were squabbles over what was shared and what was not in the kitchen. Both Krystal and Karen expressed freedom from “The Tyranny of Mother” in private and individual ways.

We all expected some bumps ahead.

But what we didn’t foresee was the power of dinner together. Maggie, Krystal and Karen had agreed to planning, shopping and making three budget-conscious meals together per week. While brainstorming over recipe ideas, delegating shopping errands and manning the stove, the three have become a family learning a lot more about each other than food preferences.

Two poster boards went up in the kitchen: a monthly calendar where everyone entered their commitments outside the house and a big white bulletin board announcing the week’s meals and menu, along with quick questions and reminders to one another.

Maggie deftly straddles the dual role of mentor roommate and contracted employee/tenant. She has learned to recognize and mentor Krystal and Karen’s varying needs without becoming a caregiver. In other words, she shares a home with them, offers guidance and leadership, but has her own busy, independent life too. Margaret and I meet with Maggie weekly or bi-weekly to review, plan and strategize. All of us have come to realize that regular and thorough communication is the oil that lubricates this machine. Whenever there’s a problem, we all try to talk about it, no matter how uncomfortable and while we don’t always find instant solutions, progress is usually made.

Back to the homework Laura assigned months ago, that business about “letting go.” It’s been the single most difficult part of this project, hurting more than any one of those airless, suffocating budget meetings or the packing up of Krystal’s childhood bedroom and putting it in a moving truck. The grief ran deep and terrified both of us, bringing up painful memories of her father’s death five years ago.

Parenting a child with a developmental disability is one hell of a job. We invest years of pain and joy in the process and letting go of it doesn’t just happen because you complete your parental homework—or not. Every time my daughter accomplishes another independent task, be it turning off the smoke alarm or taking pride in a meal she prepares, I can let that thread between us fall a little slack while knowing where the real bond lies.

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For some parents, the 'empty nest' is a fiction

By Ijeoma Ross

Unexpectedly we have found ourselves in the midst of a transformation. It’s not our transformation, but one that is taking place around us.

Many parents we know are undergoing a major transition within their families. It seems that suddenly their children are old enough to leave alone for brief outings or older siblings can be pressed into 'babysitting service' for a spontaneous night out. The hassle of finding constant care for offspring is evaporating.

While there are different concerns about leaving teenagers unattended, this is the first step toward the joys and adjustments of an empty nest, when, after years of dedicating time and energy to their children, couples are free to do what they want. They can eat out, travel and generally rearrange their schedules at will.

It sounds nice.

For parents with severely disabled children, it also sounds like fiction.

Despite his age, we cannot leave our son Deane alone and I can’t imagine a time when that would be possible.

His younger sister, who understands Deane’s needs completely, can look after him for a brief period of TV watching, but cannot lift or reposition him. We also feel strongly that she has her own life to live.

It’s not that we are without a social life. Our friends are very accommodating about doing spontaneous dinners and events at our house. They are also more than willing to put their backs into lifting Deane’s wheelchair into inaccessible houses. But now that they are increasingly free to enjoy short-notice activities and meals without kids, we just can’t adapt to that kind of schedule.

In the short-term, a full-time nanny or a robust roster of capable babysitters could provide some flexibility. But, with the exception of a couple of families who have had nannies since their children were young, I know few who have managed to make either arrangement work.

As children get older, bigger and heavier, many nannies cannot do the lifting, repositioning and other physical care. Babysitters grow up, move on to real jobs and to real lives.

I have spent much time working on a solution for our immediate needs. Finding someone reliable usually buys me a few months, but then something comes up and I am forced to start again.

The long-term issue is so depressing that I have ignored it—although I recognize that is no longer a responsible option.

So, as I listen to our friends and acquaintances talk about their increasingly free lives, I get that isolated feeling I used to get when parents talked about their children learning to walk, talk and pass other milestones. It’s another reminder that no matter how much we try, we live a very different reality.

Ijeoma Ross is a freelance writer in Toronto who blogs at Disabled Families.

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Community Living looks beyond adult 'group homes'

By Louise Kinross

Several years ago Chris Beesley wrote a BLOOM piece about how raising his son Mitchell, who has Fragile X and autism, had changed his life and career aspirations.

I met Chris last week in his new role as CEO of Community Living Ontario. I wanted to talk about options for housing for adults with intellectual disabilities.

Next week 100 of Community Living’s executive directors are coming to Toronto to brainstorm ideas that move beyond the traditional group home. The group will hear updates from an Ontario Developmental Services Capacity-Building Task Force on Housing, the federal program My House, My Choice, and a partnership between the Ontario Ministry of Community and Social Services and MaRS research hub, which issued a challenge brief to develop creative housing solutions for people with developmental disabilities.

Earlier this year an interim report from the Select Committee on Developmental Services noted there were 12,000 Ontario adults on a list for group homes with a wait of 20 years. TWENTY years.

So with my son now 20—as is Chris’s son—I wanted to hear about possibilities for change.

BLOOM: What is Community Living Ontario?

Chris Beesley: We support individuals and families in creating full citizenship for people with developmental disabilities. That means living where and with whom they want to live, inclusive education, work—either paid or volunteer—and recreational and social connections. Everyone needs to have friends.

BLOOM: Can you update us on new provincial funding for developmental services as a whole?

Chris Beesley: In the provincial budget $810 million dollars over the next three years was put into developmental services. The Ministry of Community and Social Services currently has a budget of about $1.7 billion. When this is rolled out in its entirety, it will bring the ministry's budget to a little over $2 billion per year. The net result is that there will be an extra $372 million annually in the system.

BLOOM: It sounds like a lot of money, but given the needs, it isn’t.

Chris Beesley: The money will be used to eliminate the wait list for Special Services at Home and Passport funding, and to cover new people coming into the system. They’ve also committed to 1,400 residential spaces.

BLOOM: But if 12,000 people are on a wait list, 1,400 spaces is just scratching the surface. What kind of residential spaces?

Chris Beesley: Some will be group homes, some will be individuals living with a family, like a foster situation, and some will be supported independent living. Our goal is to see government support individuals in their residence of choice in a flexible way. Eventually, we’d like to see residential dollars flow through Passport funding. Passport is individualized funding, but it’s currently capped at $25,000 and can only be used in the community, not for overnight support. Right now there are individuals who receive hundreds of thousands of dollars for residential support a year, but it flows through agencies. We’d like the option, where appropriate, to unbundle that from the agency and give it to the individual, so the individual is in control of where they live and who supports them.

BLOOM: What’s an example of out-of-the-box thinking?

Chris Beesley: Twenty five years ago 10 families came together to create an intentional community in Pickering. They accessed federal and provincial funding to construct a housing co-op with 115 units, seven of which would be occupied by their sons and daughters. They pooled the support funding their children received. 

BLOOM: How has it worked out?

Chris Beesley: It’s worked very well. But the parents have had to do a lot of the heavy lifting. Those parents are now in their 70s and wondering how they’re going to keep this up. We’d like to see better coordination and planning across government ministries, municipalities and agencies, so parents aren’t the ones trying to make all the connections.

BLOOM: What are you discussing at your housing conference?

Chris Beesley: We want to hear from our executive directors about what they’ve done, or seen, in their communities, that’s promising. What’s working, what isn’t, what are the barriers and the opportunities? We want to get a lay of the land so we can look at moving beyond group homes. We want to identify practices and models that the government may want to invest in.

BLOOM: Is there anything new you can share with us?

Chris Beesley: I just learned about how Community Living London has been successful in finding investors who want to buy houses, so that the agency’s money doesn’t get locked up in the bricks and mortar. They have 30 homes and 21 of them are owned by investors.

BLOOM: Do these investors have a connection to disability?

Chris Beesley: No, not necessarily. They’re people who want to buy a house as an investment and they want a reliable tenant who won’t skip out, and we’re able to provide reliable tenants. Community Living London has become known as a facilitator for matching great tenants and investors.

BLOOM: How can parents learn about what comes out of your conference?

Chris Beesley: Once we’ve had the event we’ll write a report that we’ll post on our website There's good stuff going on, but our challenge is to create the space for this conversation and to bring all of the parties together.

BLOOM: What ideas are you thinking about in terms of Mitchell moving out?

Chris Beesley: We’ve thought about selling our house and buying two townhouses, so we're close: one for Mitchell and one for my wife Lori and I. Maybe we'll move near a college or university so we can find a student who can live with Mitchell for cheap rent, and in return would agree to be there every night and morning.  Of course we'll need be part of the support, but this is a model that works for others so it's definitely something we'll explore.

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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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A teen's tips on raising great kids

By Abdi Hassan

Hi! My name is Abdi! I am 18. I have a disability called cerebral palsy. This disability causes my muscles to stiffen up and gives me back pain, which is why I have a power wheelchair to assist me wherever I want to go.

I’m going into my fifth year of high school to upgrade some of my courses like English. I really enjoy writing stories and news articles. I love to exercise in school and have a great time hanging out with my friends.

Here I’m going to share my tips for parents who have kids with disabilities. I’m going to talk about how you can make sure your kids are safe, happy and as independent as possible.

First, I am going to tell you about three things my parents did that have improved my self-confidence and ability to be independent.

Number one, my parents learned about, and helped me to get, the equipment and supports that I need. My parents supported me in applying for the Ontario Disability Support Program.

The ODSP helps people with disabilities who are in financial need pay for living expenses like food and housing. My parents contacted the government and helped me to set up meetings to follow through on my application. If parents are unsure about how to apply for this funding, I strongly recommend contacting your social worker or asking another health professional at your children’s rehab centre.

Number two, my parents have started letting me take more responsibility for my actions. For example, I’m now able to book WheelTrans on my own, where before my mom would speak on my behalf. This is important because as your kids get older, they want to take control of their lives. I feel proud when I do things on my own. I want to be able to look after myself and show my parents that living on my own is a realistic goal.

The final thing my parents have done well is show me a lot of love. That really encouraged me to do my best and to believe that I could set my mind to anything. My parents always were there when I needed help with something. Your kids can probably tell by what you do and how you talk to them that you love them. But I think it’s a good idea if you tell your child every day that you love them.

Now, I’d like to talk about three things I wish my parents had done to help me feel confident while having a disability.

To start with, sometimes my parents make it hard for me to go out with my friends. They may not take me seriously when I tell them I want to go out or they may not let me go because they’re worried about me.

Having friends in my life is amazing. It’s like having siblings but they don’t live with you. I have the coolest friends that I know. They make me laugh and make me happy to come to school every day.

It’s hard to have fun with them after school, though, because my parents are too cautious. They don’t always feel comfortable letting me make my own decisions when it comes to my social life. Think about how you can support your child so that they can see their friends regularly.

Next, I sometimes feel like my parents don’t think that I’m going to have a career or be able to continue my education after high school. While they ask my siblings, who don’t have disabilities, about what they’re going to do when they graduate, they don’t ask me. It makes me feel like they think I’m going to stay home for the rest of my life. But the ultimate goal for me is to live independently. My parents have a hard time dealing with the fact that I want to live on my own. I want my parents to know I still love them, no matter what, and I’m not trying to disown them.

So please, talk to your kids and teens about what they want to do when they grow up and finish school. Help them dream.

Finally, I sometimes feel that my parents overreact around me, especially when it comes to my wheelchair driving. Sometimes they say I can’t drive my chair, and that I crash into walls a lot.

Occasionally, my body is in so much pain in the mornings that I do crash. I can’t help it. But it makes me feel upset when my parents panic about accidents. And that makes me more likely to have an accident, because I’m anxious about what they’ll say.

So parents, as much as you can, try to remain calm and don’t panic with your child. Encourage your kids to ask for help if they need it.

I hope you enjoyed my story. My message to kids with disabilities is that their disability shouldn’t stop them from their dreams and aspirations. Keep on fighting and never give up. Stay positive—that attitude always helped me work hard and become a better person.

As parents reading this, I want you to take a look at your child and smile and tell them you love them. To me that is the best way to stand alongside your child with a disability and to make sure that your child is safe, happy and as independent as possible.

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In the community, but alone

By Liz Lewis

What does it mean to be part of a community? To recognize oneself and be recognized as a member of a social group, neighbourhood, or everyday world? As an anthropologist, these questions are standard fare. As the only sister of a woman with disabilities and deafblindness, they are deeply personal.

On paper, my adult sister has a great setup. Katie receives government funding to live in a home five minutes from my parents, with a lovely roommate and conscientious caregivers. Yet my sister lives in near total isolation, with no friends, activities or hobbies. And I know that as an adult with complex disabilities, she is not alone.

Katie has a genetic condition called CHARGE syndrome and needs 24-hour care. She’s never communicated verbally, although she knows some signs and her expressions of happiness and dissatisfaction are easy to read.

Katie can’t drive, cook, or really care for herself, although she can feed, bathe and dress herself with a little assistance. As the mother of a toddler, I'd say that she and my son operate on similar levels. Although I'd prefer to write something lighter and more optimistic, the truth is that Katie can’t do most of what able-bodied adults, or even children, can.

These complex disabilities mean that independence, communication and social connections look different for Katie. She finds agency in deciding what she’ll have for her snack, for instance, or whether she’ll relax with television or ask to go for a ride in the car. She asserts herself by refusing to participate in an activity or by showing joy and excitement over trying something new. She expresses love and caring by sitting quietly next to someone, giving hugs, or simply smiling. She likes to pat my son on the head, but has been known to pinch him when she’s fed up.

It can take time and patience for people to learn how Katie expresses her needs, preferences and desires. Yet again and again I have witnessed her win over caregivers, professionals and acquaintances with her unique charms. This makes it even sadder to me that when I visit my hometown, where I no longer live, my sister is largely alone.

Among adults with intellectual and developmental disabilities in the U.S., Katie is considered one of the lucky ones, meaning that she neither lives in an institutional setting nor in her childhood home. Her access to a high-quality home and staff ensure that my parents don’t bear the brunt of Katie’s lifelong caregiving needs, which will become more complicated as we all grow older. Still, as both an anthropologist and a sibling, I am disturbed by what I see.

When I visit my sister, I can't help notice her neighbours’ lowered gazes as they quickly shuffle from their driveways to their own homes; we've never exchanged a word other than “hello.” I can only imagine what the children and teenagers on the block think of her house. Katie does not go for walks—indeed, I don’t believe her street even has sidewalks—so her only time outside is when she walks the 10 feet to a waiting car to take her somewhere, typically to a park or the drive-thru of a fast food restaurant. Katie might be in the community, spatially speaking, but she is not there in any meaningful way.

Even more disturbing is my sister’s lack of activities and hobbies, which would provide a sense of accomplishment and give her new social connections. For several years, she loved attending weekly equine therapy classes, but then the program lost funding and eliminated its offerings for adults with disabilities. My family investigated volunteer options, such as sorting food containers or recycling for nonprofits or donation sites, but came up short. One well-known local organization even told us that they couldn't let Katie volunteer for them because she might harm herself, offering paternalism as a thinly veiled substitute for blatant discrimination.

The longer Katie lives like this, the farther she seems to withdraw into herself. She loses skills she once had and, at least to me, seems less able to connect with others. She develops essentially anti-social behaviours, such as eating with her hands instead of a fork, which would likely be interpreted as a product of her disabilities even though they are completely new. Although I now live in another state and can no longer participate actively in my sister’s daily life, I am consistently saddened by what I see when I visit. And this is in a state that rates average or above in disability inclusion. To be sure, the situation is far worse in many parts of the U.S. and elsewhere.

The inadequacies of the current independent living and social inclusion movement are more than disability rights issues. They also connect closely to individual safety and public health. We are all safer when we have networks of people—family, friends, coworkers, neighbors and acquaintances —looking out for us. Katie has very few of these. Similarly, there is increasing scientific evidence that social isolation is bad for our health. How might it look if we as a society began to approach social engagement for people with disabilities not as a luxury, but instead as a pressing public health issue?

While great strides have been made in recent decades regarding the integration of people with disabilities, there's much more work to do. The need to rethink what we mean by inclusion is urgent. In the U.S., only 13 states plus Washington, D.C. have closed all of their institutions and, thanks to changes in federal law such structures will soon be a thing of the past. According to United Cerebral Palsy’s most recent annual study, The Case for Inclusion, since 1960 over half of our existing institutions have closed, and 16 more are slated to shut their doors by 2016.

Why not seize this transitional moment to prioritize a new approach to community services and opportunities that make social inclusion a reality, such as increasing access to recreational and employment programs for adults with disabilities? The challenges are large-scale and will require a powerful effort to effect change in existing structures, practices and assumptions. It must no longer be acceptable to equate integration with community living services. Families, self-advocates and allies must demand a more holistic, respectful form of inclusion that acknowledges the social rights and needs of people with disabilities. I, for one, think the time has come.

For more on community living and inclusion, refer to the University of Minnesota’s Research and Training Center on Community Inclusion and to United Cerebral Palsy’s The Case for Inclusion 2014. The Center for Human Policy, Law, and Disability Studies at Syracuse University also has an extensive list of relevant resources.

Please follow Liz on her fascinating blog Disability Fieldnotes or on Twitter @LizLewisAnthro. Her last piece for BLOOM was Disability was home: From big sister to anthropologist.

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Do you have a physical disability? Want a job?

Teens with physical disabilities are about half as likely as typical teens to have part-time jobs. They may face discrimination and employers who aren’t willing to provide work accommodations or training.

Research shows that volunteer and work experiences during high school are predictors for finding well-paid work as an adult. Yet getting those jobs as a teen is harder. Many employers complain that young workers aren’t ready for work and lack the social- and problem-solving skills they need.

Holland Bloorview researchers are doing a study to learn more about the job skills teens with and without disabilities have.

We’re looking for high-school students in Grade 11 or 12 in the Greater Toronto Area to participate in a mock work interview and employment activities as part of this research. Teens with and without physical disabilities are sought.

Participants receive a $10 gift card, credit for volunteer hours and feedback. Please e-mail Sally Lindsay.

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Check out this amazing New York Times story and video that follows a young man with autism through a one-year transition program designed to ready him for independence. Above is a poster he designed to illustrate his dream of becoming a famous animator and illustrator and having his own apartment.

Autistic and seeking a place in the adult world

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Dinner is served!

Friday nights Sallyanne comes and Ben cooks for all of us!

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When is a house a home?

Last night I attended a workshop by PLAN Toronto on how to plan for a home for your adult son or daughter with developmental disability when you can no longer care for them.

We were encouraged to think outside the box: If all things are possible, what would our son or daughter like in terms of a home? What are their underlying values in terms of living?

A home needs to reflect the person's personality and choices.

The general consensus was that we can't rely on dwindling government funding or group homes, which don't have spaces, but need to think more creatively.

People talked about shared-housing options, where parents might renovate a house so that the son or daughter has a private apartment, but the whole family comes together in communal areas. We were asked to think about how we might generate money to pay for support services for our children by renting space or bartering for space (e.g. providing room and board to a university student in exchange for that student providing some type of support to our son or daughter).

We heard about arrangements where a support worker lived in a basement apartment, the person with a disability lived on the first floor, the parents lived on the second floor, and the third floor was rented to generate income. The house would then be left in trust to the person with a disability.

Developing a personal support network of friends, family and acquaintances who will continue to support your son or daughter after you die is critical.

Two families at the event had sons in a supportive home-share program. They live in a basement apartment in a host home from Monday to Friday, where they pay rent and have overnight supervision by the host. This is part of a Community Living program that, unfortunately, is not being expanded. The parents said living on their own had had huge benefits for their sons. The downside of the home-share was that there was always the uncertainty of whether the host person decided to continue in the program. This didn't provide the long-term stability we associate with home.

Parents talked about the great gains in independence their sons and daughters made when living away from the family home.

But they also spoke about how demanding it was to organize and manage meaningful activities for their adult children during the day. They said their lives often revolved around chauffeuring their children to volunteer and other activities.

The consensus of the participants was that group homes aren't an option because of wait lists and because they lack the qualities of home most parents want for their children.

We heard about a group of parents that meets monthly in Scarborough to investigate how families can work together to create housing options for their children.

Safe and Secure is a book produced by PLAN that outlines six steps to creating a good life for people with disabilities, including creating a home. It has useful worksheets you can fill out with your son or daughter. It can be found on the PLAN website or you can receive a complimentary copy at PLAN workshops.

I'm looking forward to one called Nurturing Friendship on May 18.

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