Friday, May 31, 2013

Life on the drawing board

Stephie Coveart is an original.

The 21-year-old has autism but is a social butterfly.

She can’t read, write, do math or tell time.

But the joy that bounces from her drawings of cats and dogs—each coloured in bright, bold markers, floating on white space and with quirky facial expressions—has attracted the attention of artists and animators.

“She’s pretty high-functioning socially, but her more profound disability is her developmental disability,” says Tracey Coveart, Stephie’s mother.

When Stephie graduated from high school last year, the thought of creating a meaningful life for her was daunting.

“At 21 the kids are put out into the world, whether they’re ready for it or not—and a lot are not,” Tracey says. “They lose their community, their friends, the structure and stimulating activities. When school stopped and that routine ended, Stephie would spend her whole day on the couch rocking unless we scheduled activities where she could go out with us.”

Stephie’s parents are artists who work from home. Tracey’s a writer and editor and Rob Greenway, her stepfather, is a musician and voice actor.

Stephie began an adult day program Mondays and Tuesdays but “it’s very
expensive,” Tracey says. “Sending her full-time was unaffordable for us. I don’t know what parents who work out of the house full-time do.”

On a typical day at home Stephie gets up while her parents sleep (they work into the wee hours of the morning), walks her dog Max to the end of the street and back, then heads to the family room to download cat photos, listen to music or play pet shop games.

Later Tracey may set up Stephie’s work station and papers so she can do a couple of hours of art. They have lunch together, run errands, take the dog for a run at the beach, do yoga or watch Stephie’s favourite Disney show: Kim Possible.

“We do as much as we can with her, but then she’s on her own while we get down to the business of making a living,” Tracey says. “I feel guilty when I leave her for hours watching her videos or downloading cats. But she’s happy to do that.”

Just before she graduated, Stephie framed some of her drawings and gave them to school staff. “Their response was overwhelming,” Tracey says. “The art teacher said ‘she has a gift,’ so we thought maybe we should throw up a website.”

Thanks to a number of serendipitous connections since then, Stephie’s work has been recognized in the art world and her parents recently registered a business—Stephimals—to sell her work.

But before this turn of events—“there was nothing for her to do,” Tracey says. “We would have happily let Stephie go to school for the rest of her life and that would have been a good situation for her. Even if she could have gone three days a week, something that could give her life shape and meaning and purpose in a way she could process.”

Volunteering didn’t work out because Stephie needed to be supervised, her mom says. She wanted to work at an animal shelter but was turned down because she couldn't work independently. A transition program that might have been promising was slashed.

“She became depressed for the first time, didn’t want to go outside and would cry uncontrollably that everyone had a dog and we didn’t,” Tracey says. “We did get her a dog and that eased her transition.”

Thinking about the day when they’re not here to care for Stephie is frightening.

“This is a real conundrum for parents and society,” stepdad Rob says. “Adults like Stephie can’t function in ‘normal’ society because they need constant supervision. What happens to Steph when she’s 50 and we’re not around? Without being able to read, write, prepare meals, find her way around, or use money, she’s unbelievably vulnerable. And what about her ability to feel she’s contributing to the world, and not end up being shut up in a room or in an institution of some sort?”

Stephie doesn’t have same-age friends, but she does connect with adults at the dog park, those who buy and appreciate her drawings, and with her parents’ friends, who include Stephie in their get-togethers.

“Our world is Steph,” Tracey says. “It’s definitely tiring mentally to always have to be on and responsive to her needs. She talks a lot and likes to engage you in repetitive dialogue about movies. There are things we miss out on as a couple. Rob does a lot of things on his own because we can’t leave Stephie alone. There are many things I don’t go to. We don’t have a caregiver for Steph and we won’t leave her alone at night. Yet in spite of the challenges and uncertainty of the future I can’t imagine having a more joyful presence in my life. Steph doesn’t see herself as different or deficient and she exists in this little happy place. She’s one of the most balanced and content people I know.”

A couple of times each year Stephie visits her grandfather for a few days.

The rest of the time Mom, Dad and Steph operate as a threesome.

“We tried a few weekends of respite care but she couldn’t handle it,” Tracey says. “There were too many loud people, too many people asking questions and too many people acting out. Steph got a migraine and had to come home.”

Stephie’s interest in drawing began as a child, with colouring books. But she only filled in animals, not people or any details. “And she would only colour the eyes, and then the book would go in the garbage,” Tracey says.

About 10 years ago she started drawing her unique cats and dogs on grocery receipts and restaurant napkins. Today she uses archival art markers on acid-free Bristol paper.

“None of the colours are the same, none of the expressions are the same, the number of legs vary, as do other characteristics,” Tracey says. “That’s why they’re all completely original. It’s a real style. She chooses the colours and comes up with names for each one.”

Giovanni, Off-kilter and Baby Coagulant are all part of the crew.

Stephie doesn’t draw backgrounds and her animals float in space. It’s a reflection of how she views the world, Rob says.

“There’ll be a crowd of 3,000 people and Steph will see a Yorkshire terrier the size of a small toaster. That’s all she sees.”

“She can’t really tell us, but we think she operates with tunnel vision,” Tracey says. “She’s largely unaware of her surroundings, of people or buildings. But she processes animals.”

Stephie can’t articulate her dreams for the future because she lives in the present, her parents say. “She can’t project or envision,” Tracey says. “We know she’d be happy working with animals, but she loves her adult day program and making Stephimals brings her tremendous joy. I think she imagines life will go on like this forever, living with Mom and Dad and her pets.

“The only times we’ve talked about supportive housing or a different housing arrangement that means not living with us, she refuses to talk about it. When pressed, she cries. She can’t bear that kind of thinking, so long-range planning is truncated for us.”

Rob notes that Stephie’s animals are “a perfect extension of who she is.”

“Bright and colourful and innocent and pure and uncluttered,” Tracey says.

Her emerging talent is miraculous, Tracey says, considering her early childhood. "Who would have thought it possible for a girl who used to be in her own world, non-verbal, crying inconsolably for 23.5 hours a day, unable to crawl or walk, intolerant of touch and suffering a seizure every 10 seconds? That's why I believe we are blessed."

Still, the future looms large.

“What do we do if Stephimals doesn’t pan out and this is all for nothing?” Rob asks. “It’s a scary situation and we’re pinning a lot of hope on this. We’re taking money from our retirement savings to invest in this.”

"I'm not a gambler and this is like putting everything we have in a slot machine and hoping it pays out," Tracey says. "We will never be able to retire!"

Visit Stephie at Stephimals.

Wednesday, May 29, 2013

We waited 45 years for this?

I don't like it (left).

I was excited when I saw a story about a new icon for accessible parking, bathrooms or entry ramps that's been adopted by New York City.

Everyone recognizes the old "handicapped" sign: a blue-and-white stick figure sitting in a wheelchair, hands on arm rests, circa 1968. 

I was expecting a new image to convey the word "disability" or "access," something completely out of the box and modern and edgy that would convey difference, adaptation and interdependence in a unique and unconventional way.

I was expecting an entirely new creative concept.

Instead, I see that a "team of academics" at Gordon College in eastern Massachusetts has modified the 45-year-old sign by moving the formerly upright figure forward into a 45-degree-angle posture with arms raised behind the wheels, indicating he's propelling himself.

What's most striking is that this extreme "lean forward" isn't representative of how most manual wheelchair users wheel. It depicts a wheelchair racer.

In other words, we've moved from the image of a person who appears to be waiting to be pushed, to an image of an elite athlete racing at top speed.

Is that progress?

Can you imagine updating all of our signs for women's washrooms with an image of a 100-metre sprinter? Would this allow most women to see themselves in this icon?

As so often occurs, the person with a disability is depicted as either a superhero (the wheelchair racer) or a tragic victim (unable to move independently).

What about all the people with disabilities who use power chairs, or who (God forbid) ARE pushed in their wheelchair?

They're still moving, right?

In a related story in The Chronicle of Higher Education, Victor Calise, commissioner of the New York Mayor's Office for People with Disabilities, says that the old sign suggests something "stagnant...there's no movement, and it makes people seem like they don't do much with their lives."


If you aren't an elite athlete, you're not doing something with your life?

I don't like the old sign and I don't like stick figures. But turning that static stick figure into a wheelchair racer doesn't create a symbol of access that will open mainstream minds to the needs and rights of all people with disabilities, including those who rely on others to get around (and they, too, want to "do" something with their lives). 

Tuesday, May 28, 2013

Questions about ability and neurodiversity

Many of you responded to a BLOOM post about whether there are advantages to the way people with intellectual disability (ID) think that position ID beside autism or dyslexia as a type of neurodiversity. Here author George Estreich questions whether focusing on thinking "ability" is the way to define diversity (or human value).

Questions about ability and neurodiversity
By George Estreich

In a recent article quoted in BLOOM (Neurodiversity Rewires Conventional Thinking About Brains, Wired, 4/16/13) Steve Silberman offers a look at an idea with implications for education and a broadly inclusive society: “neurodiversity,” the idea that there are more sorts of brains than are dreamed of in our current philosophies.

Neurodiversity implies a movement away from pathology and one-size-fits-all ideas of intelligence, towards a diverse humanity and ideas of multiple intelligences. I think Silberman is right that we have narrow measures of ability, and that we tend to devalue certain kinds of brains—or, more precisely, we demand a particular combination of social and intellectual deftness, which excludes many kinds of people. In excluding them, we keep them from flourishing; the loss, Silberman implies, is not only to them, but to all of us.

Neurodiversity implies an expansion of the idea of ability. And yet, as ever, the question is the meaning of ability itself. As the parent of a daughter with a disability (Down syndrome), I see pitfalls in focusing on ability, however defined, as the core of diversity. One problem is that we can, even in attempting to be open-minded, reinforce ideas we might not agree with. For instance: in saying that "X may have social deficits, but he's great with numbers," we implicitly advocate a compensatory model, in which having a disability of one kind is "made up for" by some other ability.

Another problem is that we engage in a comparative model, where people with disabilities are judged okay because they have "other talents" (whether savant-like abilities, or the special emotional powers attributed to children with Down syndrome, or whatever.) This sort of thinking assumes that disability is bad and ability is good. While this is a convenient worldview for ranking people, it doesn’t really fit with how parents, at their best, raise their children—which, to my mind anyway, should be characterized by helping each child reach her own goals, given her abilities and interests. It also leaves the parents of children with more severe disabilities out in the cold.

I don't think these are automatically consequences of Silberman’s approach, and I wholeheartedly support the recognition of different abilities, different intelligences; but ultimately I would like to see ability itself set in the context of a more inclusive vision of humans, in which humans do not lose value simply because they can do less. Not every disabled child has a compensating ability. Another way of putting this is that if we broaden the circle, there are still people left outside the circle.

Neurodiversity is a fascinating term, because it is likely meant to imply an inclusive view of both individuals and communities. On the individual level, of course, the term suggests that brains are more diverse than we might ordinarily suppose. But as Silberman points out, the term echoes biodiversity, a way of describing community. He writes, “In forests and tide pools, the value of biological diversity is resilience: the ability to withstand shifting conditions and resist attacks from predators. In a world changing faster than ever, honoring and nurturing neurodiversity is civilization’s best chance to thrive in an uncertain future.”

In other words, people who are different are valued because they are different. This sentiment, especially appearing in the pages of a mainstream publication, is welcome. Because many of us strive to rename our children as citizens, as members of a community, as opposed to a purely medical naming, and because we resist the common charge that our children are a cost or a burden, Silberman’s words are welcome. The alternate approach is either social Darwinism or eugenics. In those views, those who are different are maladapted, and they will either wash out or should be prevented in the first place. I prefer a more inclusive view. (It should be noted that the tidepool metaphor only goes so far. Mollusks, after all, don’t have rights.)

Thinking about neurodiversity, I’m left with two questions, but no easy answers. The first: How will neurodiversity play out on the ground? If everyone uses neurodiversity as a buzzword, and the “diverse” children go to a different class, then not much has changed. We should be aware of the power of language, but we should be aware of its limits too. I prefer people to say “a child with Down syndrome” to “a Down syndrome child,” but in the end, I prefer the sentence “The Down syndrome child is in the mainstream class” to “the child with Down syndrome is in the life skills class.” What matters are funding, institutional structures, and placement. So if we pay lip service to neurodiversity, but we don’t do anything different on the ground, then the word is only a word.

The second 
question: Does neurodiversity have any limits? Are there, should there, be any? Is schizophrenia, for example, a type of neurodiversity? Which conditions, to use Andrew Solomon's terms, fall under "illness," which fall under "identity," and which inhabit the gray area inbetween. To consider the meaning of neurodiversity is to consider the meaning of health.

George Estreich is a poet, college professor and the author of The Shape of the Eye.

Monday, May 27, 2013

'I have to let go of my past'

How do you adapt from a life of movement to one of paralysis? Come hear Carolyn Pioro talk about how her life as a circus performer and competitive athlete changed after a fall from a flying trapeze. Carolyn is our next BLOOM speaker on June 6 from 7-9 p.m. at Holland Bloorview.


Hope to see you there! Louise

Wednesday, May 22, 2013

Jean Vanier on accepting who we are

Last summer I visited L’Arche (The Ark) in Trosly-Breuil, France—the birthplace of a community that brings together adults with intellectual disabilities and young adult volunteers known as assistants. The model, conceived by humanist, philosopher and theologian Jean Vanier, now operates in 40 countries. In a phone interview on Monday I asked Jean what he’s learned living with people with intellectual disabilities. I was struck by the beauty of how Jean speaks and listens.

BLOOM: Is intellectual disability the most stigmatized of disabilities?

Jean Vanier: I think it can be considered one of the most stigmatized because it touches something very profound. Many people define human beings because of their capacities and success and so on. Aristotle would define someone as a ‘reasonable’ person, a person who can think, a person who is capable of doing things. He would talk about the intellectual component. And of course people with intellectual disabilities are wounded in their intellectual component, but they have another component which is very much alive, which is their capacity to love.

Somewhere in their deepest personhood they are rejected. This is the story of people with intellectual disability over the whole of history. They were considered as a punishment from God. We see this even in the Gospel of John, when the disciples of Jesus see a man born blind, one asks: ‘Is it because of the sins of the parents or his sins?’ For someone to be born without seemingly a capacity to be fully human is seen as something horrible, and therefore these people are hidden away. People don’t realize that the secret of being human is the capacity to understand, but more than that, it is the capacity to love.

To be human is to bring the head and the heart together. Individuals with severe intellectual disability have the extraordinary capacity to enter into relationships, to trust, and to love, and that is maybe the great secret of the human being. It is love that will unify the human family. We need to learn to love each other, not just to have a good head where we’re proving that we’re better than others.

BLOOM: How has your thinking about life changed as a result of living with people with intellectual disabilities?

Jean Vanier: I think what I’ve discovered living with them is about the primacy of relationships. The important thing is to be in communion with people and from communion rises up joy and fiesta. We human beings are made to have fun, we’re made to be happy, we’re made to be people of joy and joy flows from communion and unity. Anguish and violence comes from all the forms of disunity.

So human beings are called to become one and to be together. People with disabilities call forth what is most beautiful in me and others, which is the capacity for tenderness, but they also call forth difficulties, to see my own difficulties in relating and call me to work on them.

BLOOM: I often feel that my son’s disabilities are shining a light on all of my weaknesses.

Jean Vanier: That I really understand—showing a light on our weaknesses, showing a light on what it means to be human. The danger in our society is to pretend that we’re strong and powerful. We can do things, but we are all human beings. We were born in weakness and we will die in weakness. We were born to grow strong but also to grow weak. Discovering our weaknesses is about discovering who we are. The fundamental thing for human beings is to accept ourselves as we are, with our strengths and also with our weaknesses. And weakness is not something bad. It implies: ‘I need your help.’ That brings us together, because I’m not able to do everything myself. I’m calling out: ‘Can you help me?’ Fundamentally, we human beings, what we need most deeply is to know that we are loved and accepted.

BLOOM: We live in a fix-it culture where no one is ever good enough as they are. I think for parents of children with intellectual disability, there’s a real conflict between accepting your child and trying to change your child so that your child will fit into the world better.

Jean Vanier: That is a tension even for us here in L’Arche. The great fear of parents is that they don’t want their child to be looked down upon and rejected, so they want them to be as capable as possible and accepted. All of us have to go through this tension between showing we are capable and accepting ourselves with our weaknesses.

BLOOM: My son is 19 now, and sometimes I’m tired of the pressure to always be working on things with him. I feel that I miss out on enjoying the moment.

Jean Vanier: What I hear also, and I find it beautiful, is taking the time to enjoy the moment, to be together, to have fun together, so that he discovers that you love him—not because he can change and be better, but just as he is. To rejoice, to be together, each one of us as we are, that is fundamentally important.

BLOOM: It’s often assumed that people with intellectual disability can’t have a good quality of life, particularly in the medical world.

Jean Vanier: I think richness of life comes from richness of relationship. If we view richness of life from the point of view of success—power, a beautiful marriage, two cars and a house, having two children—the reality of human beings is not that. You can have all the riches of the world and still be terribly upset because no one really loves you and accepts you in your fragility.

When I think of the richness of life I think of someone like Antonio, who was here with us. He had an incredibly beautiful face and eyes and smile. He couldn’t walk, he was as fragile as you could imagine, but he had a capacity to trust us and to enter into that relationship to be with him. He changed people’s hearts.

He brought us to the place of rejoicing that we are human beings together. So if the richness of life is viewed only from society’s view of success and power, then people with intellectual disabilities do not have that. But in reality, if we accept them as they are and if they accept us as we are, we can enter into this beautiful relationship which is a relationship of celebration.

There is a beautiful story of a young man in the Special Olympics who wanted to win the 100-metre race. He got into the finals and he wanted to be first. The guy running in the next lane tripped and fell and he stopped, picked him up, and they ran hand in hand, and finished last. He was accepting not to have the prize, but to live community and solidarity.

BLOOM: The neurodiversity movement has been looking at advantages of different types of brain wiring. Do you think there are positives that come from the way people with intellectual disability think and see the world?

Jean Vanier: I think we have to be careful. People with disabilities are so different from one another. What is absolutely certain is that their fundamental need is to be loved, and to enter into relationships.

The danger of many human beings is that we’re caught up in the idea of success, of power, of doing more and more and having more. We do have to help people with disabilities to progress—to be better in the world of communication, to be able to do things to become more autonomous. But what is the most important is this incredible capacity for friendship and love, and the way they can throw themselves into our arms and be as they are, simple and loving.

People like your son can be caught up in this fear of not being accepted by society, and at the same time being very sensitive to love. I’m sometimes touched by the suffering of people with disabilities who are caught up in the same dilemma or tension as many mothers: wanting to be better, wanting to do things and be acclaimed, but at the same time accepting to live in the moment of tenderness and love and celebration and dancing.

BLOOM: Do you think our culture will ever change to the point that people with disabilities are accepted?

Jean Vanier: I think there will always be a tension. I think something has to be done in schools. I think if one can teach right at the beginning of school, not just the need for success and to go up the ladder, but the need for being together. I was at a school in Calcutta where they were in a circle and the ones who were better were helping the ones who were doing less well. It’s to help children to discover the power of love. That togetherness is something incredibly beautiful.

The fear is that our schools are being run on the power system and children are not learning to be together in a place of happiness and love. This is the problem of deep individualism.

But of course parents are struggling with this. Parents of assistants at L’Arche are struggling with this. I was speaking at a school of one of our assistants and one of the parents said ‘What are your problems at L’Arche?’

I said one of the problems is that you’re very happy if your child comes to stay at L’Arche as an assistant for six months. But if your child wants to stay longer, you’re upset. Because you say ‘staying with people like that is degrading.’

There’s a whole change needed and let’s begin at the school level, to help children so that they no longer despise a child in the classroom who’s weaker, but they can see that it’s a benefit to everybody and it brings forth the beautiful qualities in children.

BLOOM: I was amazed when I visited L’Arche in Trosly-Breuil last summer to speak with an assistant who’d been living there for 36 years.

Jean Vanier: People discover a new way of being. They discover how their qualities of love have grown, and how they’ve grown, and how fundamentally they’re deeply happy here. We have fun together. It is good to be together and there are many people here, in this particular community, who have been here a very long time.

Amazingly, there are a number of young couples aged 28 to 40 who are asking to come to L’Arche as assistants because they have experienced all of the conflict and difficulties for a family in the ordinary life of society. These are young couples who are leaving society, where there’s all this tension to go up the ladder, all this stress, to live here in community and to raise their families here.

BLOOM: What advice would you give parents of children with disabilities?

Jean Vanier: My idea would not be to give too much advice but to be with them and to listen to them and to hear first their pain, and to gradually help them discover that their child has values that they have not yet seen in him.

I would encourage them to come to a L’Arche home and to see the fun and happiness that people have. But as I say, I’m wary of giving advice. I like to be with people and I really understand parents who in some ways feel crushed and hurt, because they were hoping so much for a child that would grow up and have children, and the parents would be grandparents. So, first of all, I would understand the pain of people. There is pain. But then to walk with them and help them and to discover that their child is really very beautiful. It can take some time for parents to come to that place of rejoicing.

BLOOM: Do you find that parents’ perceptions of their children change after they come to live at L’Arche?

Jean Vanier: When a child comes here there’s a joy and a pain. Pain because their child is no longer living with them, but a joy because they know that when they, the parents, die, their children will be well.

There’s always a tension with parents, and the more disabled the child is, the more the parents have grown to love him, to hold on to him, to nurse him, to care for him or her and then the idea of losing control over the child or losing that relationship is sometimes very painful.

But parents are there not to hold on to children, but to help them be well and to grow according to their own gifts.

BLOOM: As a parent I’m fearful when I hear of stories of abuse that takes place, not at L’Arche, but at other homes for adults with disabilities.

Jean Vanier: L’Arche began when I took two men out of an institution which I considered violent and not good and not really attentive to the needs of people. There is, let’s face it, the whole history of humanity has been a long history of abuse and violence towards people with disabilities.

People don’t want to have people with disabilities around because it reminds them of their own disabilities and capacity to die. There will always be a struggle and parents have to realize that and we have to work together, not just for people with disabilities, but for people with old age, with Alzheimer’s, with other illnesses.

And there’s a whole reality between those who are rich and those who are poor. I was in Chile some time ago and going from the airport to the city and my driver pointed and said: ‘On the left are all of the slum areas of Santiago. And on the right, all of the rich places, defended by police and military. And nobody crosses the road.’

This is a bigger challenge than just people with disabilities. We have to discover that to be a human society we have to be intensely present to those who are weak and in need. A society can only be human when the strong and weak come together to celebrate life.

BLOOM: It’s funny that we’re all mortal and yet so often we go through life pretending we’re invulnerable.

Jean Vanier: We praise the strong, we praise those who are winners, and we tend to despise the weak, or we feel despised if we are weak. The greatest pain for human beings is humiliation, to be despised and put down.

The greatest fear of people who are strong is that one day they will be humiliated and won’t succeed as they wanted to succeed. We need to understand that our treasure is not in our power, but in the deep acceptance of who we are, and who we are is different but we are all people. If we try to be who we are not, that tension will someday explode.

Everybody is frightened of the word death. We’re taking that away and instead accepting that we are born to live and born to die, we are born to grow strong and born to grow weak. We are a harmony of strengths and weaknesses but it’s because of our weakness that we need help and we need relationships. The magic words are always: ‘I need your help. I need to be with people.’

Friday, May 17, 2013

Stepping out: Moms move from cautious to confident

Five children who attend Holland Bloorview's Play and Learn nursery school are participating with their moms in an adapted kids' version of a Toronto triathlon called Family, Fun, Fit on June 1.

The idea came from Andrea Haefale, a phys-ed teacher and marathon runner whose daughter Bella, 4 (above), has developmental delay and autism.

The kids' triathlon is a 15-minute event that begins in the wading pool, moves to adapted trikes, and then walking or wheeling in wheelchairs.

It's a bold step for a mom who used to hold her daughter back from public places.

"I wasn't so open about my daughter a year ago," Andrea says. "I wasn't confident to bring her to a place like the Science Centre or zoo. I was worried people would be asking: 'Why doesn't she walk? Why doesn't she talk? Why is she still drooling?'"

Andrea says that after her daughter's diagnosis she had little contact with other parents of kids with disabilities. "We were alone. Then when I brought her to Play and Learn and met the other parents there, it was like 'Wow, I'm normal. I have problems and some of these people share the same problems I do.'"

Andrea says that talking with other moms in the hallway, going for coffee while their kids are at preschool, participating in Play and Learn parent discussions and having playdates has been "almost like a support group for us. Meeting other moms really helped me be able to come to an acceptance that hey, there are a lot of other people living the same life that I do. And these moms want their children to participate in things other kids do. We want to bring awareness to other parents."

Andrea says the acceptance she's found at Play and Learn has extended to other parts of her life. "This is the first year where I'm able to talk about my daughter openly with my colleagues and friends, and have the confidence to go out, too. I used to be so embarrassed because Bella drools profoundly and still wears a bib. But now if someone asks me about it I can say: 'Yea, she drools a lot.'"

Andrea says she's no longer cautious about letting Bella try new things. "I want to introduce her to as many activities as are out there. I want to give her an opportunity to try it, and if she doesn't like it, we've tried our best."

Andrea received a flyer about the triathlon and contacted the organizer to find out if they could adapt the event for children like Bella. This will be the first year children with special needs participate, she says. "All these people are willing to have us be integrated into this race successfully, and for our kids to be active."

Thursday, May 16, 2013

Let's give kids who don't speak tools to succeed

How many words would the average, middle-class three-year-old child hear spoken to her in the course of a year?

"About 6 million," said Pat Mirenda, an expert on augmentative and alternative communication (AAC) who referenced a related study during a keynote talk at the Bloorview Research Institute's Pursuit Awards yesterday.

Pat said we could expect a deaf child of deaf parents to watch about the same number of signs over a year.

But what about kids who can't speak or sign and use a voice device or pictures to communicate? How often would a young child see these symbols used around them in a year?

"Zero," Pat said. "Zilch. We're not in a symbol-using community and children rarely see others using the same symbols they use, yet we expect them to magically be able to know what to do."

We know that children need to absorb vast amounts of language before being able to express it, Pat said. We know that modelling of AAC is important. But this is an area where we aren't translating research into practice.

"We don't routinely do it," Pat said. "We don't teach teachers they should point to symbols when communicating, we don't teach parents to point to symbols, and we don't teach educational assistants and peers."

Another gap occurs when we assume children who use AAC can't learn to read. "If we can teach a child to manipulate 26 letters, they can say whatever they want," Pat said, noting that expression isn't dependent on the number of symbols programmed into a device.

"But literacy is not a routine practice, still, in Canada, the U.S. and elsewhere in the world." Too often professionals have low expectations for complicated kids and make a decision, at age two to five, that literacy isn't a goal. "We should just teach them to make sandwiches," she said.

In an 
earlier interview, Pat said this sets children who use AAC up for exclusion. "They're the ones in self-contained classrooms who often don't get literacy and language instruction, and people just say 'that's too bad.' It's kind of stunning in 2013 that people still think they can tell a book by its cover.
"We know how to teach children to become literate, but we're not doing it," she said at her keynote.

Historically clinicians have decided what type of AAC system a person uses, and the individual had no input, Pat said. 

She talked about the importance of self-determination for people using AAC, which she described as including the following:

Autonomy, which means being able to act according to your own preferences, interests and abilities. For example, if a child wants four-letter curse words programmed into his device, he should get them.

Self-regulation, which involves problem-solving, goal-setting, self-monitoring, decision-making and self-evaluation. Of course clients won't always make good choices, but that is true of all of us, Pat said.

Psychological empowerment, which is about helping children see they can make things happen in their own life. It's about "learned hopefulness," rather than "learned helplessness," she said.

And self-realization 
happens when you understand your strengths and challenges and can capitalize on what you're good at.

Pat said 
the focus must be on what a child needs to communicate in settings that are "important and motivating to the child."

She said that too often voice devices are programmed with words for "wants and needs" but not for everyday socializing which is the foundation of friendship. Being able to tell jokes, make comments, and use phrases related to games are important to kids. "Relationships" are the ultimate prize, Pat said, and if an AAC system isn't helping a child maintain and enhance their social network "what are we doing?"

Pat is a professor in the department of Educational and Counselling Psychology and Special Education at the University of British Columbia. She is also a board-certified behaviour analyst.

Wednesday, May 15, 2013

My son's climb is steeper than most

By D. Christine Brown

Our 4-year-old son is recovering from severe brain inflammation 20 months ago. Although he's now developmentally delayed, has an irregular EEG on the left side of his brain, and also has a resulting autism diagnosis, he's been looking progressively more "neurotypical" as his brain heals. It's been a journey of hope and optimism for his future.

But a few recent events planted some seeds of doubt in my mind. First there was the story of the parents who could no longer care for their 19-year-old autistic son, so left him at a government office. The boy is at the developmental stage of an 18-month-old, which includes unrolling the toilet paper, then trying to shove it all into the toilet.

Then I attended Silken Laumann's BLOOM speaker event. She mentioned worrying that her 17-year-old autistic stepdaughter could at any moment throw a jar across the room at the head of one of her biological children.

I'm also finally reading Bad Animals after seeing author Joel Yanofsky speak at Indigo last October. In it, he describes how you have so much hope when you first get therapy for your child after an autism diagnosis. Then, at some point, you realize that he's starting Grade 5 and maybe this is the way things are going to stay.

I began to picture our lives going forward. What if Lucas doesn't fully recover? Will these examples become our reality once Lucas is too big to pick up and move around?

I decided to give a music playgroup a third try. It was the same group we had started just before my son's brain inflammation, just over a year-and-a-half ago.

We tried it again last year, but he wasn't ready yet. I thought he might be ready this year so off we went to the indoor playground with the other parents (mostly mothers) and young toddlers.

My son towered over them, but they paid attention to the leader. They put their hands in the air on command, their knee up to balance during the appropriate part of the song. My son ran off to return to the slide and ball pit. There was zero participation on his part, aside from looking at everyone's face as he rotated around the middle of the room before racing out.

Towards the end of the class a father was leaving with his daughter and passed us on his way out. "Oh, he wasn't interested today?" he said, gesturing to Lucas up in the climbing structure. Here came the eruption of doubt.

"He's developmentally delayed," I said. "He's recovering from severe brain inflammation." The poor guy was sympathetic and asked if Lucas would recover. "Nobody knows," I said. "It's a wait and see." He commented on how hard it must be for us, and how he wished he could do something.

Tears welled up. "I'm sorry," I said. "I'm not usually like this, but in situations when I see other kids, it hits me." I also told him how Lucas has been recovering and making great progress.

"At least he looks really happy," he said. "He is," I said, then quickly scooped up Lucas, gathered our things and headed to the park before the rest of the class let out, wiping the tears off my face.

Lucas' behaviour has recently regressed a bit. He's mouthing and throwing all objects again for the first time in months. It's relentless; he's throwing everything in sight. As we walked to the park, I was in a cloud of despair, trying to be cheerful as I ran with my son through the grass on a beautiful sunny day, watching him kick sand and throw sticks. I was more discouraged than I'd been in a long time.

On the way home from hearing Silken Laumann speak, I heard philosophers interviewed on CBC about the moral obligation of helping others. One discussed the lack of difference between saving a drowning child in front of you and donating to famine relief in Africa: they're both going to make a difference in someone's life.

I thought about the misfortune of my son's brain inflammation and subsequent setbacks and how determined I am to facilitate his (full) recovery. He indeed, might recover. I thought about the children who don't. What about their parents? Some never get a break.

Our current reality is but a glimpse into the hardships in their world and it is draining. It is defeating. It isn't fair. Of course there are also gifts, insights and great moments, but how would I feel if my son escaped the fate that others don't? What if the day comes when my son no longer has disability status?

I know I can't go back to a normal life after all we've experienced.

It's my moral obligation and duty to advocate, and if my son recovers, I'll have the energy and time that others don't. I'm a researcher by profession and have gained a wealth of new knowledge since our road turned. I'm persistent and resourceful. I'll do what I can make to a difference: to promote and facilitate more understanding and support for other families living with disabilities.

After the failed music group, Lucas decided to run along the path surrounding the park. At the end there were only three choices: on to the road of oncoming traffic, turning back, or going up a very steep hill. Lately Lucas has enjoyed saying "too steep" about the slides at the playgrounds. I saw this as a great opportunity to incorporate another context for the word steep. "Lucas!" I exclaimed, "Look at the steep, steep hill! Can we make it up the steep hill or is it toooooo steep to climb up?"

He laughed, I grabbed his hand, and up we started. I suddenly remembered that as a small child I hated group activities. I didn't like to conform. Maybe Lucas just has my personality, I thought.

Lucas was laughing and giggling as we zigzagged up. It was exhilarating. At the top I stopped and held Lucas, looking down. "Look!" I said. "We made it!"

And then, BAM! It came to me: this was our last 20 months and we've made it to the top. Lucas is doing great. He's recovering and making tremendous progress. We don't have to compare ourselves to the other toddlers. Their hills haven't been as steep.

Tuesday, May 14, 2013

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.

Monday, May 13, 2013

'The soundtrack of my life'

By Jason Nolan

I have always made sense of the world through sound and music, so it's not strange that the music of my child and teen years, the late-70s and early-80s, had such an impact on me. I’m also autistic, and have a strange obsession with words. Sound, music and words are a part of my echolalia—the automatic repeating of what I hear and read—that have become important placeholders for my thinking.

My music is probably not your music and my music was largely angry music. What I remember is a time of anarchy in the UK: not that of the Sex Pistols, but rather well thought-out social protest. A quartet of songs come to mind that influenced my thinking on social justice decades before I located myself as someone seen as ‘other’ or different in a manner reflecting these voices.

Tom Robinson’s twin anthems “Sing if you’re glad to be gay” (1977) and “Power in the Darkness” (1978), and Ian Dury’s “Spasticus Autisticus”(1981) are obvious statements about racism, homophobia and ableism. Although I was neither gay, a visible minority nor (as I thought at the time) disabled, these songs spoke to me in their rage against intolerance. The Only One’s “Another Girl, Another Planet” (1978) was an unrepentant challenge to the social norms proscribing self-medication and drug addiction, as well as a statement about feeling like being from another planet. Incidentally, this song plays through the opening credits of the comedy Paul (2011), a movie about an alien trying to get home.

I chose these songs because they all popped into my head this morning, one after another. But there is always a logic to my seeming randomness. I was thinking of a title for this piece and I thought of translating “Autistic Professor” into Latin: something like “Professorius Autisticus.” But I thought it sounded too much like “Spasticus Autisticus.” And as the train of thought left the station, I was overwhelmed by the associations of the music and mood of British pub rock from which the music sprung. In a few moments I’d worked out all these songs, and had to get up to write it down. It was 5 a.m.

My sounds and my music rotate at high speed around the central core of me. It is not anyone else’s music, just my way of ordering and making sense of the world. Take it away from me and you will see a catastrophic meltdown. But you can’t take it away from me. The words and sounds echo in my head whenever I need to flush out the crass sounds of the world of typical folk. Conversations, trucks reversing, air conditioners, fluorescent lights’ 60Hz hum, that strange 13kHz reverberation of the tinnitus that follows me wherever I go all bleed into nothingness when the songs and sounds I like take prominence. Call these my auditory stim, even though the sounds may be swirling only in my head; I’ve long since been socialized out of making strange vocal utterances.

Luckily for me, I was a latch-key child. When I grew up there was no MTV, Disney Channel or CDs, and little of the mass-marketed musical commodifications that today overwhelm children and deaden their senses. But neither was I overwhelmed with prescribed parental culture. My parents had few records I remember. I only remember Festival of Light Classical Music (Reader’s Digest), A Taste of Honey (Herb Alpert), Living in the Past (Jethro Tull) and Beyond the Fringe (Peter Cook and Dudley Moore). Most importantly, however, I was never institutionalized in daycare, and subject to a standardized regimen of age- or developmentally-appropriate music. Jethro Tull’s counterpunctual Bourée, and Liszt's Hungarian Rhapsody, are the two songs I remember transporting me the farthest. I would get my stim as I hummed along and conducted in time with the music.

Largely left to my own, and living on my own, on and off since I was 17, I have been free to form my own acoustic palette of sounds and words that interest me, soothe me and help me to organize my thinking. They are not sounds and words that others might choose, but as always with me, they spring forth fully formed from my lips or fingertips, or merely float about in my mind. I do not plan what I am going to do or say, and each word written here has been laid down one after another without reflection or compositional intention. Most importantly, they have not been prompted, directed, demanded or cajoled by anyone according to anyone’s notion of what should go where, beyond the general influence of having read too many books and having finally figured out how to construct sentences and paragraphs.

My words, like my music, like my movements, choices of clothing, tastes, curiosities, interests, desires and passions are, to me, intrinsically situated in myself, and are the foundation of my motivations. To take them away from me is to remove me from myself, and there is nothing left.

As I sit here, age 50, as a professor and director of the Experiential Design and Gaming Environments Lab at Ryerson University, I don’t have to wonder how I got here. I got here because I fell through the cracks somehow, and was largely left to my own devices. Without heteronomous (that is invasive or helicopter) parenting, institutionalizing influences or the normalizing of commercialized children’s culture, I have survived largely intact. My therapeutic interventions followed the social rather than medical model. I was shown how to engage with others when I wanted to, and the normalizing expectations that were as onerous as any Acquired Behaviour Analysis (ABA) session were directed at enabling me to accomplish basic tasks and social interactions. However, there was so much room for me and my interests that both escaped below the radar or were allowed to roam unchecked, perhaps because they were not so outlandish. Or perhaps because, by having such outlets and freedom, I was not so over-stressed as to feel the need for a more dynamic mode of expression.

Left on my own, I was a happy child. When I was forced to engage I was not. Yet I did like being around people when I was able to choose, and I was always interested in knowing how to engage with others when I was the one choosing when. John Locke said that we should keep children healthy and safe from harm and from harming others, but otherwise give them no parental interference whatsoever, neither direction, admonition or even toys. They should be left on their own without adult influence until they so choose to come to us. They will come with their own intrinsic interests and motivations, their own goals and aspirations, their own sense of self. For, as he put it, there is nothing so sad as an adult who does not know what drives his or her own passions.

We live in a world where few have the chance to ever learn what really drives their passions. We live in a world that does not provide equitable support and opportunity for those of us with non-standard and inconvenient special needs. We live in a world that lacks respect or understanding for diverse ways of thinking and living. We live with parents who want the best for us, but are often lead to believe that the relative anonymity of neurotypical and institutional norms—trying to fit in and act normal in school, social situations and the workplace—are the only path worth following.

If our goals, and the goals we have for the children in our care, is to help them to be all they can be, then it is incumbent on us all to ensure that we are doing everything we can to nurture every scrap of intrinsic interest in ourselves and all children, in the face of institutionalized norms and standardizing influences.

I fell through the cracks, and luckily not much attention was given to try and fix me. And what was tried, didn’t work very well. Yes, I dropped out of high school and worked a string of dead-end jobs, then returned to high school when I found an inclusive learning environment that helped me find my interests and strengths. I wandered through a liberal arts education, slowly learning how to communicate properly with others through the pages of stories of how others engaged. After a dozen years fumbling through school and jobs and even some teaching, I realized that I wanted to learn about learning.

Another dozen years later I got my first full-time job, at age 43. And I sit in my lab, with grad students working on various projects, while the soundtrack of my life plays on the speakers at my desk, perhaps bothering others somewhat. But I know it is the sea in which I swim. Brian Eno’s “Another Green World” or Hawkwind’s “Quark, Strangeness and Charm” can be heard day in, day out. These sounds are my stim. And it is this stim that makes the world possible.

Tuesday, May 7, 2013

Immigrant moms hit service wall

Immigrant mothers face a brick wall trying to get services for their children with disabilities in the Greater Toronto Area, says one mom of a child with autism who's also a social worker and University of Toronto professor.

“I’m supposed to know how to get through, and I don’t,” said Charmaine Williams at the Mothers Speak Up! Café Scientifique at Holland Bloorview yesterday.

The event brought together mothers and service providers to discuss the findings of a York University research study into barriers facing immigrant mothers of children with disabilities.

Despite her professional qualifications and the fact that she speaks English, Charmaine described the health, school and social supports for families like hers as “a bureaucratic obstacle course.”

The York University research on 30 immigrant mothers in the GTA and 27 service providers found a long list of barriers: fragmented services across the city that are hard to access and get to on public transit; long waits; language barriers; employers who don’t accommodate parents who need flexibility to meet the needs of their child; poverty; and discrimination by service providers, especially in schools.

“The more visible a minority you are, whether it’s your language or you’re black, the lower the expectations of the school,” said Sharon Smith, a mom with two children with special needs who immigrated from Trinidad.

Sharon said it was harder to get appropriate services for her son with significant medical and developmental disabilities than for her son who was highly verbal and only had social issues.

"It's not just 
my race,” Sharon said. “It’s also discrimination based on the degree of disability. My older son is quite verbal with social issues, but the school has been very supportive. But it’s very difficult and a constant struggle to get school supports for my younger son with seizures" and more significant language problems, she said.

“It seems that they make a judgment on what value people like my disabled child will be to society in the future” she said, and allocate resources accordingly.

Yana Skybin, a settlement counsellor with YMCA Newcomer Services in Simcoe County and mom of three children with autism said “just speaking with an accent” can lead to unequal treatment.

“[Service providers] ‘downtalk’ to women, even those who speak English,” Yana said. “If you don’t know how people communicate [in this culture], they assume you don’t have any education. When [mothers] don’t understand the system or speak with an accent, they treat them as if they have a disability. It is not an equal conversation.”

Yana noted that when she immigrated to Canada from the Ukraine she didn’t understand the “politics and interpersonal skills” needed to effectively advocate here. “At first I was too direct.”

Gail Jones, director of community support at Kerry’s Place Autism Services, said government-funded services “are not set up for people who don’t speak English or French.”

She also noted that cultural differences in how disability is understood can make it hard for families to get what they need. For example, she told the story of a family that didn’t follow through on behavior strategies they were given for their child.

After a number of staff attempted to work with the family, they decided to change course. Instead of focusing on behavioural intervention, they helped the family develop a network of support with their faith community.

“As the parents saw people from their faith community accept this child and the disability, only then could they accept it,” Gail said. “Other professionals might have wrongly labeled the family as non-compliant, instead of being flexible in their understanding and support approach.”

A mother noted that in the Asian community referring to your child as having special needs “is losing face. So parents will make excuses. My child is shy. She’s fine, she’s just afraid to talk to strangers.”

An advocacy group representing 70 Chinese families with children with disabilities said they were unable to get government funding because their parent support group is conducted in Mandarin.

Many mothers who suspected their child had a developmental issue were not believed, they said, by health and other service providers. Sometimes their parenting skills were faulted.

“It took two years to get a diagnosis,” Yana said. In the meantime, she was instructed to go to parenting courses, where she found that “90 per cent of the parents had children with special needs.”

Many of the mothers became single parents when their husbands left.

In recounting her despair at trying to cope with her childrens’ constant meltdowns and disbelief from service providers—including being told one child was simply “spoiled—” Yana recalled “hitting the bathtub with my hands until they hurt.”

Social isolation added to the stress. “People don’t know how to talk with me about being a mom of a child with a disability,” Charmaine said. “Other parents avoid [us] and [my child] becomes invisible.”

Sheila Jennings, the Mothers Speak Up! project coordinator and a lawyer doing graduate research on the rights of moms and their children with disabilities to support, noted that attendance at government-funded ESL programs for adults posed a barrier because of strict attendance policies. A participant explained that when moms had to miss class to attend to a child’s illness or serious meltdown “they were kicked out.”

Sheila said moms were heroic in the perseverance and creativity they brought to their advocacy despite numerous barriers.

Many were unable to fill out forms or advocate effectively at school meetings because they didn't speak English well enough, and many didn’t have Internet access.

Charmaine noted that “the world wants us to keep caregiving private because they don’t want to be accountable for it. Caregiving needs to be recognized as paid work. We need policy reform to support women engaged in caregiving.”

In pointing to services that make their lives easier, mothers said their best experiences happened when information and services were coordinated and available under the same roof.

The research is led by York University researcher Nazilla Khanlou. The Mothers Speak Up! event was sponsored by the Canadian Institutes of Health Research Institute of Gender and Health. A full report with references will be distributed this summer. To receive a copy, e-mail with "Mothers Project Report" as the subject.

Monday, May 6, 2013

'Young Carers' recognizes sibs have special needs, too

By Megan Jones

Denise Clayton and her family are too familiar with hospitals: in fact, they’ve spent nine of the past 11 Christmases in one.

Denise’s middle daughter Stephanie (photo right) was born with omphalocele, a condition that causes abdominal organs to grow outside the body. Although a string of operations has long since put everything back in place, the 11-year-old has spent most of her life hospitalized.

Today Stephanie lives with intestinal failure and experiences debilitating chronic pain, which often becomes so intense that it causes her to yell and scream uncontrollably. The pain comes quickly, and with little warning: one minute Stephanie might be running and playing. The next, she’s doubled over.

The uncertainty caused by the slew of surgeries, constant hospital stays and sudden, crushing pain has been undeniably stressful for Stephanie. But, Denise points out, it has also taken its toll on a less-discussed set of family members: her other two daughters.

Sydney, 13 (centre), and Danielle, 9 (left), have learned from an early age how to care for their sister—and for themselves. Denise’s husband, Greg, often travels outside of the province for work. So when their mother has to unexpectedly rush Stephanie to the hospital, her other two children are left to take care of themselves.

“They never know when they come home if there’s going to be somebody there,” Denise says. “They don’t know who’s going to get them dinner; they don’t know who’s going to help them with their homework.”

For years, Denise’s family coped without outside support for Sydney and Danielle. Although Denise looked for sibling support, nearly all the respite and therapy services she found were designed for parents, or for the children living with an illness or disability themselves.

Then, finally, after almost a decade of searching, Denise found the Young Carers Program.

Young Carers, which launched in early 2011, offers support to children under 18 who care for family members with a disability, addiction or chronic illness. While Young Carers offers programs specifically for siblings through a program called “Sibs,” not all clients are responsible for aiding their brothers and sisters. Some help sick parents or grandparents instead.

The service is run and funded by Hospice Toronto, and offers weekly programs, drop-in services, seasonal day camps, and monthly group excursions to places like theme parks and movie theatres. It also acts as a liaison between families and schools, stepping in when children can’t attend classes or complete assignments, and helping schools adapt to fit families’ needs.

According to Larisa MacSween, the program’s manager, too often young carers’ needs are eclipsed by those of their sibling or relative with special needs. While carers may be stressed and anxious, many feel too guilty or embarrassed to ask for support when a brother, sister or parent requires extra care. Young carers also seldom get the chance to “just be kids,” as their responsibilities and parents’ commitments leave little or no time for extracurricular activities or play dates with friends.

But at Young Carers, programming blends fun activities with discussion: the idea is to allow kids a safe space and time to relax, while working in serious talks about how to better cope with stress, or how to balance their own emotional needs with those of their family members.

Larisa says one of the most important things the program does is show kids that they’re not alone. “When children find they’re connected to someone else who’s been through the same experience, that completely boosts their self-image and their self-esteem,” she says.

“Having an outlet to think about their own needs, and learning to express them, that also really gives them a big boost.”

This has certainly been the case for Denise’s daughters. She says the program has given them a sense of community and belonging. “[Young Carers] is making my kids feel like they are being heard, they are understood, they are not alone and they have a place to go,” she says.

Currently, the program supports about 100 registered children. But the idea of a young carer is still relatively new in North America. Larisa says that the importance of supporting young carers has only started to be afforded attention in the last year or so in Canada. As a result, few comparable programs exist. And with an estimated 108,000 young carers Canada-wide, many kids still go without help.

Denise believes this needs to change. She says the support Young Carers offers has helped her daughters tremendously.

“With Sydney I notice that when she goes to Young Carers, she comes home and she’s not as anxious as she typically is,” Denise says.

“They both seem to be more tolerant. Tolerant to their sister’s screaming, or not being able to do something that day, like go out and ride their bikes. After attending the program they’re more understanding.”

Recognizing that not all parents will have access to support programs, Larisa says that parents can do small things to help siblings at home. She stresses that communication is key, and suggests parents keep children up to date about the health of their brother or sister, in order to ease anxiety. She also says parents should encourage kids to speak about their feelings, and share their stresses and fears.

Most importantly, Larisa says, young carers should be commended for their work, and validated for the help they provide their families.

“When children hear ‘Hey, you’re really doing a great job,’ that alone can show them how much they are valued,” she says.