Friday, October 30, 2015

Social worker's new office is on the farm

By Louise Kinross

Former Holland Bloorview social worker Stephanie Willison (now Deaken) has an unusual work partner.

She’s a 10-month old black pig with white fur stockings.

“Penelope” is a therapy pig on Stephanie’s therapeutic farm located in Mono, Ont.

Stephanie and her husband Darryl purchased the farm to offer programs to children and young adults with a variety of disabilities and their families. BLOOM interviewed Stephanie about
Fiddlehead Care Farm, which is named for the fiddlehead plants that cover the property.

BLOOM: What was your role at Holland Bloorview?

Stephanie Willison: I worked with children and families as a social worker on our inpatient complex continuing care unit as well as with the brain injury rehab team and the child development program serving families with children with autism.

BLOOM: How did you initially get interested in working with kids with disabilities?

Stephanie Willison: My older sister Rhonda has Down syndrome, so I’ve worked with people with special needs since I was really little. At a young age I was a babysitter for children with special needs and before Holland Bloorview I worked as a deaf-blind intervenor.

BLOOM: What was it like to have an older sister with a disability?

Stephanie Willison: Overall it was extremely positive. My sister is such a positive, happy person. She was involved in Special Olympics and was a world champion figure skater, so we were always going to events and involved in the special-needs community. As a sibling you learn things like acceptance and maturity a lot faster.

BLOOM: Was there anything you struggled with?

Stephanie Willison: As my sister got older my brother and I went away to university and she was like ‘What about me? What do I get to do?’ I think my parents had pictured building a suite in the house and having Rhonda live there forever, but she didn’t want to. So they found her a group home placement in Collingwood and she works in a daycare and is very happy there. But seeing her move away from us, and always worrying about whether she’s going to be okay, is stressful. Even though she’s my older sister, I always had a protective role with her.

BLOOM: What is Fiddlehead Care Farm?

Stephanie Willison: Care farming is something that’s quite popular in Europe. It’s the use of farming and the outdoors for therapeutic purposes—for promoting physical or mental health and overall wellbeing. It’s a combination of what could be called horticultural therapy, or gardening, and animal-assisted therapy. Being outside with the farm animals and in the garden is therapeutic for the mind, body and soul.

BLOOM: Who is the farm targeted to?

Stephanie Willison: Children and young adults with a variety of disabilities and mental-health needs.

BLOOM: What programs do you offer?

Stephanie Willison: I offer individual counselling for children and their families. That includes nature-assisted therapy and animal-assisted therapy with Penelope, who’s our therapeutic pig. We’re usually outside and what we do is activity-based or play-based. We may do different games, work in the garden, or go on nature trails for talk therapy, but while we’re talking we’re in the woods.

We want to offer a school program for special-needs classrooms tailored to whatever the teacher wants. It could be a farm-to table program that teaches where our food comes from and healthy eating, or a program that involves nature or our animals.

I have a background in brain injury and family intervention and the Triple P parenting programs so whatever parents and families and classrooms want, I want to be able to provide that.

BLOOM: What about young adults with disabilities?

Stephanie Willison: We’re thinking about work placements where they could work in the garden or feed Penelope or maintain some of the trails or plants. We’re also open to having an adult come to the farm with a care worker to work on life skills.

BLOOM: Are you farmers?

Stephanie Willison: My husband Darryl is a farmer. He grew up on a dairy farm. I’ve always worked with people with special needs and for many years we talked about combining our passions and having some type of farm for kids and adults with special needs.

We came across the idea of care farming and spent over a year looking for properties. This one, which was a therapeutic riding centre, magically came up. It’s built for horses and we have a stable and a whole inside riding arena that is fully accessible. We don’t have horses yet and probably won’t get into that for a few years.

We raise organic chickens and taught the kids that some are for eggs and some for meat. We have cows here from Darryl’s family farm. Other than that we harvest the land and we have lots of vegetables and organic hay.

BLOOM: What was it like to move from a hospital setting to a rural setting?

Stephanie Willison: It’s been amazing. I was able to build all of this while I was on maternity leave with my son Brady, who is one. It’s nice to be in an area where he can grow up and around nature.

BLOOM: What’s been the biggest challenge?

Stephanie Willison: It’s a much-needed service and when I talk to people they’re very excited about it and word-of-mouth is getting out. But for people to take the next step and make an appointment or come out to visit has been very limited. Right now I have three clients, which I’m happy with. But I have to figure out how to help families have the time and energy and courage to make that call to say we need help.

BLOOM: Where are you located?

Stephanie Willison: We’re about 15 minutes north of Orangeville. So from downtown Toronto, or Holland Bloorview, it’s an hour for sure.

BLOOM: What are some of the benefits you see from working with children in nature and with animals?

Stephanie Willison: For some kids there’s a sort of magic in being around animals. They feel comforted and they feel okay about talking about things that they might not otherwise. For example, at our open house a mom and three boys came. The parents are going through a tough divorce. We sat down outside and I introduced Penelope and she was walking around us. They began petting her. One of the boys spontaneously started talking about his dad and the mom’s jaw just dropped. She listened, and Penelope listened, and the mom said “he’s never said anything like that to me or anyone.”

I read
Last Child in the Woods, and the whole concept is how kids need to be taught to play outside again and how to have free exploration: ‘There’s the woods, go and play.’ They don’t know how to do that anymore because they only have structured activities.

So having the space for children and families to explore together—whether it’s picking up leaves or picking blackberries—brings people together.

To learn more, call Stephanie at 647-624-8421 or visit 
Fiddlehead.




Thursday, October 29, 2015

Telling clinician and patient stories improves care

By Louise Kinross

“Paying attention to stories makes us better doctors, nurses and healers and is also good for patients, clients and survivors,” said Dr. Allan Peterkin a professor of psychiatry and head of the Program in Health, Arts and Humanities at the University of Toronto.

Dr. Peterkin was kicking off the Art Heals Health symposium yesterday that brought together clinicians, artists and educators to talk about how art can be used to improve healthcare and vice versa.

Dr. Peterkin’s talk looked at the healing power of stories.

Medicine has tended to “take the story of the provider and the person out,” Dr. Peterkin noted, and to distil to a few diagnostic words the patient experience “in a way that doesn’t do justice to it.”

This is a response to evidence-based medicine, he said.

In contrast, stories are about “what’s unique and particular” to a person, and care is improved by the clinician’s ability to listen to, tell, and make meaning out of stories over time.

Methods for doing this include reading and discussing medical fiction or illness stories by lay people and writing in response to a prompt that helps clinicians reflect on their work.

Clinicians "almost always write about things that have troubled them,” Dr. Peterkin said. Reading and discussing texts and writing about their experiences makes clinicians better able to communicate and connect with patients and families.

Dr. Peterkin noted that research shows that reading poetry and novels increases the level of empathy in any reader because it helps us imagine being in another person’s shoes. “Your worldview is being stretched by characters that are different from you. To try to understand them you need empathy.”

Dr. Peterkin noted that stories engage both the left and right sides of our brain and make us pay attention to detail and words. “One word in a poem can have 10 different meanings to 10 readers.” This leads to “narrative humility” in clinicians. “We may think we know what patients are saying, but we may not be on the same page.”

“Write about a mistake” or “Write about a goodbye” are examples of prompts for clinicians or healthcare students.

In narrative groups clinicians are asked to: “write about something that matters to them, or is unprocessed; include a beginning, middle and end; write as if you were telling a friend; and show what happened and how you feel about it.”

The act of organizing the story on the page “reorganizes the way we look at things and challenges our pre-assumptions about a story,” Dr. Peterkin said. We can revisit stories and slowly, at our own pace, make meaning out of them.

The other health workers who listen to a piece being read aloud in a narrative group can be “helpful editors as opposed to critics,” Dr. Peterkin said. They're often able to point things out that the author may not have seen in his or her writing.

A new four-day workshop on narrative healthcare is being offered by Mount Sinai Hospital and the University of Toronto in June 2016.
Check out Narrative Healthcare Atelier & Certificate Program.

Tuesday, October 27, 2015

For people with disabilities, the need to stay fit starts early

By Louise Kinross

Last year we reported that children with disabilities are two to four times more likely to be overweight, and two to four times less likely to be physically active, than their peers.

The numbers were shared at a consensus-building workshop at Holland Bloorview that brought international experts and families together to address weight management.


Canadian Living has an excellent piece on this topic in its November magazine: Staying fit when disabled.

Many of you will recognize Joanna Miedzik, who's interviewed in the feature about her own struggles with weight growing up with spina bifida. Joanna is one of Holland Bloorview's amazing receptionists.

The story includes research from scientist Amy McPherson in the Bloorview Research Institute and commentary from Lorry Chen, one of our clinical dietitians.

Most important are four tips to help your child with disabilities stay active. Click on the link above.

 

Monday, October 26, 2015

Jim and the pursuit of happiness

By Karin Melberg Schwier

We think about my eldest son Jim’s happiness. A lot. What turns, straightaways, twists to take, what unexpected adventures there might be.

I get the same feeling this time of year when we drive out to the Rosthern Youth Farm corn maze on a Sunday afternoon. So much fun and so many possibilities. They give clues and you hunt for prizes.

Sometimes we hit a dead end. You never know what might be around the next corner. One time we even discovered an escaped pot bellied pig! Even so, there’s always the worry. What if we get lost along the way? What if we aren’t doing enough?

Happiness. Sure, I think about our youngest son Ben’s and daughter Erin’s well being, too. They’re all adults. Ben and Erin have their own spouses—Julia and Michael, respectively. Erin and Michael have a nine-year-old. So I think about the in-law kids, and grandson Alexander, too.

Our son Jim has Down syndrome. Helping him discover and nurture those things that will give him a rich batch of fun and adventure falls largely to us.

We take some paths. Many good. Others bottom out. Sometimes we get stuck. So the question of whether or not Jim is enjoying his life has set up full time residence in our heads.

Snuggled right up to that question are many others along the lines of “Are we helping him live a good life? What could we do better?” And every now and then, the old chestnut: “Why do we suck so bad as parents?” That doesn’t happen too often, but a tough one to chew on when it does.

Jim is 41. Green eyes. Killer smile. Blonde hair that now gets buzzed down by Aziz at JR’s Barbershop. Jim likes his hair “prickly.” He’s got a sly, dry sense of humour, but also loves good slapstick.

He used to talk to the point where we’d beg him to give us a break, but as he’s gotten older, he’s become more stoic and quiet. He wears two hearing aids and his right ear is pretty well shot, so speech is difficult. He just won’t if he doesn’t have to, or if he’s not motivated. However, “May I have a glass of chardonnay, please?” seems to come out very clearly at The Yard and Flagon pub.

Jim is a veteran volunteer at the Saskatoon YMCA; he’s been working in the laundry and maintaining the pool deck for 20 years now. It’s his solid base. We help staff tweak Jim’s routine now and then if things get a little stale, or if new staff need a little orientation on how best to work with Jim.

One of his coworkers, Heather, is a faithful advocate, always quick to get in touch when things are going well for Jim and on the days where he’s feeling a bit off. Since Jim was little, he’s always loved basketball (probably a genetic condition due to his birth in Indiana). Heather convinces Jim a few times a week to shoot some hoops with her in the Y gym so they both get a little fun break from the routine.

But while Jim has a solid job, which he looks forward to and enjoys most days, that’s just the baseline. We know it’s up to us to help Jim discover interesting, fun and enriching experiences. The colourful, spicy parts of life. It’s an ongoing pursuit. And that pursuit doesn’t lend itself to nice neatly defined goals.

Jim used to love drumming. When the theme music to Star Trek would come on, he’d leap up, race to his room for his snare drum, roar back to the TV room and pound out the beat. He loved Star Trek, too. These days, not so much. He’ll say, “Did that already” and that heralds the passing of the interest.

At first we fretted about that. But how many of us are still enraptured by the fascinations we had as prepubescents? (Not counting my lifetime commitment to Bobby Sherman, obviously.)

We try to help Jim make his own choices (tough when he’s pretty silent) while encouraging and, yes, sometimes insisting that he try something or participate when we are pretty sure he’ll enjoy it. Pitch in to volunteer at the community garden. Volunteer with us at the Friendship Inn. Usher at church with Dad. Write a “feel better” note to an old family friend in hospital. Let’s try watercolour painting. Ask a friend’s son to play badminton.

Jim’s got a few other things on the go. We travel a lot. When we’re home, Jim has enjoyed a lot of matches made through the University’s Best Buddies chapter; some good, some really great.

For several years, we hired a young man to meet up with Jim two or three times a month to do “guy stuff” like gokarting, shooting pool, going to the pub, trying a new restaurant. Jim helped Ryan out with home projects, volunteer jobs, and a drama group for at-risk adolescents.

Ryan and Jim often took Ryan’s toddler son Jack to the biology museum or for ice cream. But the relationship slowly petered out as Ryan’s own young family grew. We miss that one; Jack always looked forward to seeing “Uncle Jim.” It doesn’t mean it failed, but we have to try another path.

An important piece in this pursuit of happiness is finding other people. While we fret over the new things Jim might find joy in, we remind ourselves to relax and celebrate the good connections he does have.

We’re lucky to be in a position where I work at home so can be the one to take Jim to work, pick him up, go to appointments. Rick recently retired from the University, though he’s still teaching some.

We’re reinventing our roles with Jim. Not everyone can do that. We’re the conductors, but we don’t want to be “everything” in Jim’s orchestra. He needs other people who like him, people he will feel connected to and comfortable with. What we’re really after is to add a few more fun people to his life. It’s the tricky part. And we have to get past the fear of rejection if we ask and someone says no.

Back to that corn maze. If you’ve ever done one, you’ll recognize the journey. I think the trick is to keep looking around the next corner. We expose our children to things we think might spark even a tiny glimmer of interest and see where it goes.

If I can throw in another metaphor, Jim’s life is like a patchwork quilt in progress. A piece of this, a little of that, stitch that together here, this piece works with that but not with this one. We try to set aside the panic and frustration that it’s not all coming together fast (or even slowly!) and just try to enjoy the adventure.

Every couple of months, we email a little update about Jim to Jim’s siblings and nephew in California, and far-flung friends and family all over the world. Collecting a few photos and describing what Jim’s been up lately helps us have a good look at his life on a regular basis. Not only does it maintain Jim’s connection to a wide network of people, as we sort through photos and decide what to send, we’re reminded of what he really enjoys doing, what worked out, what we can build on.


Part of Jim's future happiness depends on what we do now to build those connections for him. There will come a day when one or both of us won't be around. We've written wills, designed a trust, established an RDSP. We've had many wonderful discussions with Jim's brother and sister, who both say they “have Jim's back.” They understand what a good life looks like for Jim and because they're an ongoing part of it (even though they live far away), we hope the transition won't be too gut-wrenching. Different, obviously, but a good life will go on for Jim with Ben, Erin and their families taking over. Their networks of friends know Jim, so those connections have already begun.
 
Sometimes we need to consciously remind ourselves to enjoy each other while all this searching for a good life is going on. We all stop and have a glass of wine on the back deck and play a game of Go Fish together.

Or we light the chimenea and ruin some marshmallows. We laugh. A lot. I probably suck at being Jim’s stepmom a lot of the time. But when he’s making a joke during Go Fish, or gives me a big smooch while my marshmallow goes up in flames, I think he feels his life is pretty okay.

And who knows? The more things we try, the better the chance of having an interesting, joyful life. Maybe we’ll even find another potbellied pig!

Karin Melberg Schwier is the author of several books. Her most recent is Flourish: People with Disabilities Living Life with Passion, available in Holland Bloorview's library. She co-authored Sexuality: Your Sons and Daughters with Intellectual Disabilities with Dave Hingsburger, and it's been translated into German, Italian and Korean. She also co-authored Breaking Bread, Nourishing Connections: Mealtimes for People with and without Disabilities with Erin Schwier Stewart. Click on her byline at the top to visit her website and find out about purchasing the latter two books. Photo by Richard Schwier.

 

Friday, October 23, 2015

I worked in kids' rehab, but I didn't 'get it' till my son had autism

By Tracey McGillivray

The day I started my job at Bloorview Children’s Hospital over 20 years ago, I read
Welcome to Holland by Emily Perl Kingsley, who has a son with Down syndrome.

In it, she writes about the journey of parents raising a child with disabilities, comparing it to an exciting trip to Italy that is unexpectedly re-routed. She describes the shock, the disorientation and ultimately, the acceptance that follows.

It galvanized me. As director of public relations and fundraising for the hospital I listened to families’ stories and reveled in the fact that I could help make a difference. I wrote about their issues and helped fundraise for new and improved programs. I admired the dedicated and skilled staff members on the frontline. We were all trying to make things better.

We were showing families how to thrive in 
Holland.

Ten years later, I was a stay-at-home mom with two dogs and two kids born 18 months apart. Our youngest, Thomas, is on the autism spectrum. We were moving, and as I cleared out the filing cabinet I came across a piece of paper I hadn’t seen in a long time.

“After you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandts.”

I sat on the floor, re-reading the words that had so inspired me when I worked in children’s rehab. I slipped the fragile, yellowed paper out of its protective plastic sheet and held it in my hands.

Then I ripped it into tiny pieces.

I was upset with that past version of me, the naïve 25-year-old who thought she understood something of what it was like to parent a child with special needs.

I remembered parents at the hospital telling me: “We are so tired. We haven’t slept in years.”

I thought I “got it” when I worked there, but there’s nothing like being a special needs parent to awaken you for real.

When he was little, Thomas was a runner, a climber of third-floor banisters, an un-locker of front doors and child-proofed drawers. Each morning I whispered, Please let me keep him alive today. And each night in my dreams I’d see him charging onto the road in front of a car. I’d wake with a pounding heart, fingers clutching air.

I knew I was tired. But until I found that essay, I hadn’t realized how angry I was. Angry that the issues I’d written about, and thought we were working to improve, were the exact same issues I encountered a decade later as I tried to find the right therapists, to get Thomas a developmental assessment and to cope.

I thought I'd understood what parents were telling me, but really I hadn't.

Our kids are more than a diagnosis or a compilation of medical needs, they said. “Treat the whole person, not just the problem.” As the head of public relations, I nodded and wrote down that catchy phrase. Of course, I thought. That makes total sense. Why would anyone do anything else?

Then I had my own experience with health workers who didn’t treat Thomas as a real person, who took away our power.

When he was four, Thomas needed surgery to correct a minor birth defect. The day of his pre-operation bloodwork, he had a total meltdown. He thrashed and hollered as three staff members held him on a bed. Get the legs, one of them instructed me.

“Don’t worry, boy. The vein is good!” the woman drawing blood started yelling over Thomas’s crying. She said it several times, as if it would reassure him. “Boy! The vein is good!”

Shut up, I implored in my head. Just shut up.

Then it was over. We collected ourselves, blew our noses, and left. I was too shaken to drive, so Thomas and I sat side-by-side on the steps of the hospital, sharing a bag of Cheesies. That day I didn’t care about empty calories or orange dye. People streamed past us in both directions as if we were invisible.

How did I just let that happen? I wondered. How did I let them hold my son down? How did I let that nurse call him “boy?”

When I wrote stories about families at Bloorview, parents told me: “We live with a constant level of stress. Disaster is never more than one step away.”

I heard what they said, but I didn’t get it till I lived it with my own son.

One hot summer day, as we waited to turn left onto the street where the speech therapist worked, a tiny helicopter whizzed by my head and out the car window. “Harold fly!” exclaimed Thomas, whose lack of impulse control had just gotten the better of him. His beloved toy landed on the road in front of oncoming traffic. The first of many cars ran over it. Rumble rumble thwack.

Thomas had unclipped his car seat (he was a whiz at getting out of any intended restraint) and was trying to climb out the half-open window. “Harold!” he called as I shouted in panic, “Oh no, sit down. No!”

I put the car in park and pulled him back in. By now, people in the cars behind us were leaning on their horns. I wrestled him into his seat. Somehow we made our way to the parking lot. By then he’d cried himself to sleep.

The speech therapist looked at my face, then at the passed-out, tear-stained kid in my arms. I was trying to rouse him, desperate not to waste a minute of therapy despite all that had just happened.

“Let him sleep,” she said. “Tell me what happened.”

Everything came pouring out that day. It was the first time I revealed what a mess I was. How every time someone told me what a great parent I was, my stomach twisted in dissenting knots.

Years before, the parents I worked with had explained this feeling: “Even when we make progress, we still feel behind.”

At his first optometrist appointment, Thomas sat in the chair and followed the doctor’s directions. He sang out the names of the letters on the chart and shouted “There!” whenever the yellow light flashed on the video screen. He was calm and accommodating, two words I hadn’t imagined using to describe my son. I was proud of him. We had come so far!

“Now, mom,” said the optometrist. “He needs to make eye contact. If he’s not looking at you, he’s not listening.”

I explained that this theory didn’t fit with the latest thinking, that people with autism can be overwhelmed when they try to process visual and auditory information all at once. “Some people actually hear better if you don’t force them to look at you,” I said.

He raised his eyebrows. “Oh, really? I hadn’t heard that. Well, I also notice he’s not scanning very well. That will impact reading. You need to practise every day. Here, I’ll show you what to do….”

I was so proud of how Thomas had handled the eye test, but once we were out on the sidewalk I felt deflated. “Even the (bleeping) optometrist is giving us homework!”

When I worked at Bloorview, parents told me “the system is not a system at all. We’re forced to tell our story over and over.”

Mrs. B., a mom whose friendly, freckled son had complex needs, said she’d gotten so fed up with repeating her child’s health history that she’d recorded a cassette tape.

“It got to the point where I’d hear the first question—Was it a normal pregnancy? —and I’d want to scream,” she said. “So now I hand them the tape and say, it’s all there.”

From my chair on the other side of the desk, I wondered if she was brave or strident, or both.

Years later, as I dutifully filled in countless forms for a myriad of specialists, I remembered Mrs. B. They were the same questions, over and over. I’d submit the answers in writing and then, when the first appointment rolled around, we’d work through the same questions verbally. What a colossal waste of time when there was none to lose.

The next time it happened, I opened my mouth to complain. But before I could, the therapist said, “I realize a lot of this is in the report you filled out. I have a learning disability and sometimes I don’t completely process written information. So I like to be sure.”

Oh.

Everywhere I went, at Thomas’s school and out in the world, I asked people to better understand my son and make accommodations for his needs. Surely I could offer the same consideration to the therapist, or to anyone who asked it.

It was a humbling reminder. We are all just human beings, experts included, trying to do our best. Something shifted inside. Maybe I could forgive that former me, who had tried her best with good intentions. And maybe it was time for me to ask for help of my own, to find my own footing in Holland, as Emily Perl Kingsley had written about in her essay.

Thomas will be 15 in a few weeks. He’s taller than me. He’s an amazing artist who tries hard at school and has a few good friends. He decompresses on his swing many times a day. He is a charming and disarming boy, who tells me, “ I love you, Mom, but you really do suck at air hockey.”

 I’m totally okay with that.
 

Wednesday, October 21, 2015

Did disabled man consent to sex with 'prof' who helped him type?

There is a fascinating and harrowing account in this weekend's New York Times Magazine about a relationship between a professor and a severely disabled man. 

The man, known as D.J., has severe cerebral palsy, doesn't speak, and has been diagnosed with a significant intellectual disability.

The professor, Anna Stubblefield, was formerly chair of philosophy at Rutgers University. She'd been asked by D.J.'s family to help him communicate through a method known as "facilitated communication," where someone supports the arm of a person to enable them to type. Much controversy surrounds the use of assisted keyboarding and whether the messages are generated by the facilitator, or the person being supported.

Anna was charged with, and found guilty of, two counts of first-degree aggravated sexual assault and now faces up to 40 years in prison. She said they were in love.

Tuesday, October 20, 2015

'If you see us on the bus:' The family behind the commotion

By Susan Cosgrove

If you see us on the bus, I guarantee you’ll hear us too. You’ll want to look up from your phone or book or newspaper and watch the activity.

Because the fact is that we are a commotion—everywhere and anywhere we go. I probably look an awful lot like I’m okay with that, but sometimes my vulnerability is hard to hide. If you look a little closer you’ll understand why.

If you watch us, you can tell that I’m the mom. In fact, I’m a single mom to three very special kids. The big, noisy man-child is Liam. He’s 12 and has autism; he’s barging his way into adolescence at an awkwardly astounding pace that scares me, and confuses his delicate sense of self.

He’s the one who gets the funny looks because he loves to sing “The Wheels on the Bus,” ask the same questions over and over, and tell anyone who will listen why the Autobots can’t be friends with the Decepticons.

Liam understands very well that he is autistic and is often angry about that.

If you see him on a good day you might just turn the volume on your music a little louder and tune him out. But if you see him on a bad day, you may hit pause and watch. You may even chat with your fellow passengers about the big boy who’s crying because he forgot his iPad at home, or growling at a stranger who accidently bumped into him.

If you pass us in the aisle, you’ll wonder why I brought a big, bulky stroller that’s not at all appropriate for public transit. I may give you an apologetic look as you squeeze by.

Phoenix, my toddler, is the reason I take it everywhere. Phoenix is two, and, just like his big brother, he has autism. He is smart and cute and generally overwhelmed by the outside world.

You may hear him recite the bus number or even read some words from the signs and buttons on the bus. You’ll probably want to smile at him and maybe even try to touch his blond curls. But if you do, you’ll understand why I drag a great, big stroller wherever I go.


Chances are he’ll react to you with fear, screaming and banging his head repeatedly on the headrest of his stroller. Phoenix's habit of self-injury when he's overwhelmed is probably the hardest thing I've ever dealt with as a parent.

I will smile at you and let you know that you’ve done nothing wrong, but he has autism and it’s really best if you leave him alone. My hand will remain close to his sweet head, as a barrier between himself and his instinct for self-harm.

If you sit back and listen, without touching Phoenix, you may hear him say and do some pretty extraordinary things. And he probably won’t notice if you smile at me to let me know that you can see he’s kind of awesome (I wholeheartedly agree).

If you watch my family ride the bus, you’ll see how exciting life can be.


You may notice Kaya, their bright, eccentric 10-year-old sister. She’s the one with the funky haircut and metallic pink Doc Martins. Kaya is the middle child and the only one who doesn’t have autism. She does have a diagnosis that includes being gifted and having ADHD and a learning disability. When she grows up she wants to be a labour and delivery nurse or open a drag queen hair and esthetics salon. Either one is fine with me.

On the bus, Kaya’s probably chatting at a rapid pace, telling anyone who will listen about Minecraft and music.

But if we’re having a bad day, you may get a chance to see her as a young caregiver in action. How easily she forgets that she is 10, and slips into the role of helping me help the boys through our commute. She may be reading the toddler a book, or offering Liam her phone to play with in the hopes that he’ll settle down.

In her eyes you will see that she understands why her brothers draw so much attention and how much she loves and protects them. What you may not see is how many of the normal things in life she has sacrificed for her brothers and me, how often she ends up playing the caregiving role, and how graciously she accepts it.

If you watch how I interact with them, you may think that I look calm. That's because my demeanour can have an impact on the success or failure of our trip. We may be heading to the movies or to an appointment, but my goal is always just to arrive. You’ll notice how quiet I keep my voice in the hope that they will pick up on my signals and join me with some quiet of their own.

You’ll see me constantly glancing around and sending out smiles to my fellow passengers. Smiles that say “I know you’re looking at me and I understand why. I know you wanted a quiet ride, but today it won’t happen.”

By smiling I am asking you to take a moment and put yourself in my shoes. Riding the bus with these amazing kids is a journey that requires planning, and our success can be affected by our fellow travellers. And it’s not just the bus ride. Everywhere we go and everything we do is planned according to the needs of the boys. Spontaneity is not part of our lifestyle.

If you see us on the bus (or at the store, in the park, at the doctor’s office), you’ll know that we are a special family. There are many ways that you can honour our unique journey. Share a smile or a story with us, let us know you understand. If a quiet commute is what you prefer, we don't mind if you politely switch seats and distance yourself from our chaos.

Just remember that although he may be different, Liam is learning to understand himself.

So if he asks you “Please don’t touch me/talk to me/laugh at me because I’m autistic,” please respect that. Self-advocacy is a skill that he’s working hard to learn and I’ve taught him that if he’s honest with people, they’ll respect his difference. On a good day he may ask or tell you something a few times. Please feel free to chat with him. You may learn something new about the world.

If I see you on the bus and I can tell that your journey is like mine, that maybe we are travelling the same path, I promise I will smile. I will send you vibes of understanding, and just maybe, if our little ones are having a good day, we can even have a chat.

If I see you on the bus I promise to respect your journey, whatever that may be.


Susan Cosgrove is a family leader on Holland Bloorview's Research Family Engagement Committee.

Monday, October 19, 2015

At the Blue Jays game, my son is no longer an outsider



By Keith McArthur

My son Bryson and I were among the tens of thousands who congregated on Front Street after Game 5 of the Blue Jays-Rangers division series. It was undoubtedly one of the best moments of my life.

Walking back to the parking lot, we couldn’t move more than a few steps without someone coming up to give Bryson a high five. One generous fan gave Bryson a ball he had caught at the game. Earlier, a vendor who was selling posters outside the Rogers Centre ate his costs and gave one to Bryson for free. They were strangers, but then again they weren’t. This was our tribe and Bryson was at the centre of it.

In many ways, Bryson goes through his life as an outsider. As a non-verbal 9-year-old in a wheelchair, he tends to be the quiet observer looking in from the outside. Not this time. Halfway through our walk, a jubilant Bryson let out a cheer and dozens around us joined in. Then the same amazing thing happened again. And again. For a few brief moments, Bryson wasn’t just part of the tribe, he was leading it.

Tribalism in sports tends to be viewed negatively. It can certainly lead to boorish behaviour as it did in the seventh inning when angry fans began throwing beer. But the power of sports is that it creates a sense of belonging. We are Toronto. We are Canada. We are the Blue Jays.

For four hours, the 49,000 fans at the game—and millions more watching on TV—shared a communion of emotions. Together, we were excited at returning home for a game five that seemed impossible a few days before. Together, we were worried when Texas took an early 2-0 lead. Together, we were angry when we felt the Rangers had stolen a run. Together, we were ecstatic when Jose Bautista hit his three-run home run. Together, we were concerned when Texas brought the tying run to the plate in the eighth inning. Together we were triumphant when our 20-year-old closer pummeled Texas with four strikeouts to secure victory.

Even after the game, Canadians rallied around our hero, Jose Bautista, as he became America’s villain, criticized for not playing the game the right way.

I remember an awkward teenage period where I felt like an outsider. At school, I felt depressed and lonely, but at Blue Jays games, I was confident and optimistic. It was the late eighties and the new SkyDome was selling out game after game. I was part of it all. I belonged.

A friend of mine took his 97-year-old grandfather, a holocaust survivor, to the 14-inning playoff game earlier in this series. He’s been a fan since 1977 and never misses a game; he won’t even eat if the Jays are playing. After losing most of his family and living through unimaginable horrors as a young man in a concentration camp, the Blue Jays provided comfort. They still do.

There are no outsiders in a sports tribe. You’re in because you choose to be. This, of course, is not absolute. After a baby got hit by a thrown beer in the seventh inning, most in social media were appalled. But some blamed the parents for bringing a baby to a winner-take-all game. Babies didn’t belong in their tribe.

There are probably some who feel the same about Bryson, but for those magical moments after Game 5, he felt only acceptance. Most days, Bryson has a hard time sitting in a wheelchair for a long period of time. He is scared of large crowds. And he is terrified by noise. But when I take him to Blue Jays games, none of those things bother him. A sense of calm falls over him. He is safe and secure with his tribe.

Jerry Seinfeld famously said we don’t cheer for players, we cheer for the clothes they wear.

But that’s not right. We cheer to belong.

Friday, October 16, 2015

'Neglect' contributed to autistic teen's death in NHS unit

By Louise Kinross 

In 2013 Connor Sparrowhawk (with sister Rosie) drowned in a bath following a seizure in a National Health Services treatment unit in Oxfordshire, England. He was alone.

Today a jury inquest ruled his death had been "contributed to by neglect" and said staff had poor communication with Connor's family and inadequate training and supervision. 

The 18-year-old had autism, epilepsy and intellectual disability. The NHS trust that ran the unit initially attributed his death to natural causes, but his parents called for an independent investigation that found his death preventable. 

Earlier this year we interviewed Connor's mother Sara Ryan, a senior researcher and autism specialist at Oxford University. "The staff had the knowledge," she told BLOOM. "They knew he was epileptic and I'd told them he was having seizures in there and was sensitive to medication change. They hadn't properly assessed his epilepsy and he was left unsupervised in the bath."  

Please take a moment to read the family's story.   

When I advocate for Thorin, I see Monty too



By Kari Wagner-Peck

My son Thorin lives with Down syndrome. Early on, professionals and lay people repeatedly assured us that all children with Down syndrome are happy.

In time I came to realize that these people meant more than “happy.” They meant “simple.” They believed people with Down syndrome couldn’t understand the complexities and ambiguities of life, so, as a result, they were happy.

I knew this was not a universal truth about people with Down syndrome. No one is happy all the time. I had known someone with Down syndrome, and he was definitely not happy. He was also quite painfully aware of the complexities of life.

I was 13 and two weeks away from my Lutheran confirmation. Without talking it over with my parents, I went to Pastor Larsen and told him: “I don’t believe in God, so I can’t go through with my confirmation.”

What I didn’t say was that I had no idea what “God” was, but the church seemed preachy and hypocritical to me, definitely not what I had imagined as God-like.

Instead, I shared with the pastor a quote from Dostoyevsky’s The Brothers Karamozov. I had read it at confirmation class that week, and it better conveyed my way of thinking:

“Love all God’s creation, both the whole and every grain of sand. Love every leaf, every ray of light. Love the animals, love the plants, love each separate thing. If thou love each thing thou wilt perceive the mystery of God in all; and when once thou perceive this, thou wilt thenceforward grow every day to a fuller understanding of it: until thou come at last to love the whole world with a love that will then be all-embracing and universal.”

The pastor gave me reasons to get confirmed anyway. “You’re thinking about the whole thing too much,” he said. “I’m positive there are others that feel the same way.”

“So it’s up to them to say something or not, right?” I said.

“That’s not what I meant,” he said. “No one in my 30 years of being a pastor has ever refused to be confirmed!”

My parents were furious. Not so much for the “over-thinking-religion” part but for the “embarrassing-them” business. We agreed they would not drag me by my hair down the aisle of the church to be confirmed, and I would volunteer at the church rather than attend services that I found objectionable.

My job was to help in the basement with the “retarded kids” while their parents attended church upstairs. That is how they were described to me: retarded kids. It was a small group of children who had Down syndrome.

The room had dark wood panelling, carpeting and a large meeting table with chairs. It was clearly a conference room. There were no toys, construction paper or anything else that might intrigue a child in play.

I immediately hated the adult volunteer who ran the little gulag. He seemed to get off on how hopeless and pathetic he found these children to be. And, he was enamoured with himself: he thought he was great for spending his time with them.

“They’re hopeless cases,” he told me. “We don’t do much here but make sure they stay in the room.”

I nodded but wondered why these kids couldn’t be in the regular daycare. My younger sister, at that very moment, was on the second floor of the church in the nursery, likely eating paste.

I sat on the floor in the basement trying to improvise little games with crumpled paper, trying to engage the children.

Almost immediately I noticed one of the kids was not “a kid.” He looked to be in his early 20s. Even as a teenager I was very much aware that he was an adult. His name was Monty. He wore a green suit with a striped tie, his shoes were shined and his hair combed neatly back. He was dressed for church. Yet he was here in a room with children who should have been elsewhere.

In spite of his circumstances, he presented himself in a dignified manner, sitting at the table sipping from a glass of water. I hoped his impassive gaze toward the centre of the room was a mask, and inside he had spirited himself away to another place: a place where he was recognized as a man.

Monty was most certainly not happy.

More than once I tried to engage him in eye contact. I wanted to message him some compassion—some tiny acknowledgement that this was not just wrong, but destructive to loving all God’s creation.

I lasted just one week at the job. At 13, I had no idea how to change what seemed so obviously awful to me in that basement.

It was just a few years ago I shared that day with my mother, so great was my shame about my inability. “I had no idea they were down there,” she said. “What did we do to these children like our Thorin?”

Today when I advocate for Thorin in the world—I see Monty, too. I spent a little over an hour in the same room with Monty, decades ago, and it pains me to think about what I could not do then.

This month is National Down Syndrome Awareness Month in the U.S. Over 30 years ago President Ronald Reagan proclaimed this month be set aside to acknowledge the contributions of people with Down syndrome and to spread awareness, advocacy and inclusion. 

A good reminder, not just for the month of October, but everyday, is that Monty, Thorin and all people with Down syndrome deserve the “all-embracing and universal” love I shared with my pastor in Dostoyevsky’s words all those years ago.

This post originally appeared on Kari Wagner-Peck's blog a typical son in a slightly different form. You can follow Kari on Twitter @atypicalson.

Thursday, October 15, 2015

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

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

BLOOM: How did you get the idea?

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

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

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

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

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

BLOOM: Who is working with you on the project?

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

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

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

BLOOM: Can you describe the plans for the playground?

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

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

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

BLOOM: What is the cost of the project?

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

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

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

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

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

Wednesday, October 14, 2015

How you rate BLOOM

By Louise Kinross

What do people most often read on BLOOM?

“Real family stories” is the most popular content on our blog and in our magazine and e-letter, according to our summer survey that drew 189 respondents.

“It is great from a parent perspective to know you are not alone and there are so many common threads to parenting special needs children, no matter what the disability,” one respondent wrote. BLOOM “celebrates real families and highlights their strengths and their journey” wrote another.

In answer to What topics do you read most on BLOOM, “Real family stories” ranked first, followed by Disability news, Parenting tips, experiences and resources, Growing up (life skills), Research and Disability rights and ethics. Ranking lowest were Role models, Respite, Books and Friends. Of course this is  the perspective of the almost 200 people who filled out the survey. It will help guide our focus in the future, but you can continue to expect a wide range of articles on BLOOM.

When asked what you would like to see more of, Disability and education, Fun and recreation, Travelling with a disability, Disability and employment and Apps and technology scored highest. You said you were least interested in adoption and accessible clothes.

In terms of conditions you want to read more about, developmental disabilities rated highest, followed by cerebral palsy, communication problems and mental illness.

Respondents said they are most interested in print stories, less interested in photo galleries and inspiring quotes, and least interested in video.

Facebook, YouTube, Twitter and LinkedIn are the most used social media networks among respondents. Given that 85 per cent of BLOOM’s social referral traffic comes from Facebook, we launched a new
BLOOM Facebook page recently and plan to focus on that network the most. Please visit and "like" us to get regular updates.

Of survey readers who had children, 27% of those youth are under age eight, 57% are between nine and 20 and 16% are over 20. Professionals make up 28% of all respondents and 5% are adults with disabilities. In terms of visiting the BLOOM blog, 31% said they come once a month, 23% a few times a month and 20% visit once a week or once a day.

Most respondents live in Canada, although readers from the U.S., France, Switzerland, Honk Kong, Argentina and New Zealand also filled out the survey. Only 62% of you receive the BLOOM e-letter, and most prefer to receive it monthly.
Click here if you'd like to sign up (you can remove your name at any time).

Thank you for sharing a broad range of publications and websites you enjoy on disability and parenting. There are too many to name here but we will outreach to them and add them to our sites of interest in the future.

Our respondents were generous in providing feedback on the BLOOM e-letter, magazine and on the blog in general. Here is a small sampling of your suggestions.

“Superb writing, articles and editing. Interesting intelligent, insightful and compassionate. Local and international. Reflects diverse experiences socio economic and cultural. The content also often challenges existing stereotypes and attitudes and social constructs and societal beliefs about disability!!! Celebrates real familes and highlights their strengths and their journey!”

“Bloom needs its own Twitter account!”

“I LOVE the BLOOM newsletter! It is always informative, insightful and inspiring! I am always so happy to see it in my in-box and I try to read it right away.”

“I love the print version of Bloom—I was sad to hear it was being discontinued—such a great resource to physically share with other families...”

“Try to avoid duplication of print and online articles and stories.”

“The content of BLOOM is excellent. But often times, it is very difficult to read the whole long article. I would appreciate if they are shorter.”


“More articles on what parents would find useful from a professional.”

“Companies that make useful products for people with disabilities.”

“Please name and describe scientists, students, funding sources, partnerships and publications more fully and accurately.”

 “BLOOM is super as it is! Keep up the great work! And a huge heartfelt THANK YOU. I really appreciate and benefit from the BLOOM blog.”

“Would appreciate accessibility for videos (captioning or a transcript).”

“You're doing a magnificent job. BLOOM keeps me connected to the larger disability community and I really appreciate that. It's not just one silo and I think that's really important.”

 “Please discontinue sending printed copies to every staff member; it is not environmentally responsible.”

“I think BLOOM is amazing and covers so much relevant information that is so helpful and useful. It is also great to get the international perspective as I don't think there is another newsletter that has that type of coverage.”


I would like to see more opinion from the editor. Once in a while a hard-hitting opinion piece about policy would be great.”


“I look forward to reading BLOOM’s offering every day when I come into work (I’m on the West coast so it’s in my box by the time I arrive). I find it a very useful look at the way parents think and a corrective sometimes to my own biases.”

“It’s a great compilation of news, advice and personal stories. I always find several articles to read, learn and ponder in BLOOM. And almost every issue has a story or observation with which I identify as a parent. It’s so reassuring to know there are other parents working through the same issues, struggling, succeeding, sometimes failing, but moving forward as best we can.”

As an update, in response to your comments, we are no longer producing the magazine version of BLOOM. Print and postage costs were expensive and we want to capitalize on reaching people online. We will be launching a Twitter account in the near future. We know we need to caption our videos. We don’t have a dedicated resource for this but are working on it.

Thank you to everyone who took the time to provide such rich input on what you like and don’t like about BLOOM, and how we can improve. You also provided us with a ton of amazing story ideas which we plan to follow up on. We are very grateful!

 

Tuesday, October 13, 2015

Tuesday morning read and listen

Who knew the Blue Lagoon in Iceland markets its services to wheelchair users and those with other special needs?

Check out CurbFree by Cory Lee (in photo above) for this detailed account of his recent trip with a wheelchair. And here Blue Lagoon lists its accessibility features.

Canadian lawyer David Lepofsky gave a brilliant talk at the 2nd Annual CP-NET Science and Family Day last week on making education disability-accessible. Please take a listen.

And read these two important stories from The New York Times over the weekend. In The Myth of the 'Autistic Shooter,' Far From The Tree author Andrew Solomon writes that there's no connection between autism and murder, despite scapegoating after a recent shooting in Oregon.

And this fascinating and horrifying review of the biography of 'The Hidden Kennedy daughter' documents the Kennedy's family inability to accept Rosemary Kennedy, who struggled to learn to read and write and couldn't compete with her brilliant and athletic siblings. They sent her away to numerous schools, camps and convents and eventually authorized a prefrontal lobotomy that left her permanently disabled and unable to care for herself. The details are shocking.

Happy Tuesday folks! 

Friday, October 9, 2015

Maritza's dream: Games that make therapy fun

By Megan Jones

It started with her brother. Maritza Basaran remembers sitting with him years ago, playing video games. Jaimie, who has autism, loved to hang out in the living room and fool around on his Nintendo. But without strong literacy and fine-motor skills, he couldn’t always play the games he wanted to. He couldn’t read the onscreen text, and sometimes wasn’t able to move fast enough to advance through the levels. So Maritza and her mother would plug in a second controller and play alongside him, doing most of the in-game work themselves.

The strategy worked for a while, but as Jaimie grew older, he caught on. Realizing that he wasn’t actually playing the game upset him, and he steadily lost interest in the activity.

“It was sad to see him give up on something that had once made him happy,” Maritza says.

Years later, in 2012, Maritza began work as a nanny for a toddler with cerebral palsy. She noticed the child tried to move and interact with the animated characters she saw onscreen while watching TV or movies. But, like Maritza’s sibling, it was hard to find media that she could fully engage with.

“She and my brother weren’t able to interact with the platforms the same way as other kids could,” Maritza says. “Not necessarily because of their disabilities, but because the media that was available didn’t suit their needs.”

Maritza knew the situation was avoidable, and began to think about how to make video games and other media that could be accessible for children with a wide range of abilities. “No kid should pick up a video game and think, ‘Oh, I have to work harder,’” she says. “No, you should have fun just like any other kid.”

Today, Maritza, 26, is applying her training in psychology and media design to a project at Holland Bloorview. Along with scientist Elaine Biddiss, Maritza, a research assistant and child media specialist, is working to develop a game that can double as physical therapy for children with CP.

Using the Kinect, a webcam-style add-on for Xbox, the game tracks players’ movements—that is, the motions they make in real life are reflected onscreen. The focus of the game will be on encouraging kids to perform therapy movements—such as reach and grasp—while completing different in-game tasks.

While the project is still in its early stages, some details are set. The game follows the story of Botley, a hapless but well-meaning painter robot who dreams of becoming an inventor. To help him with his painting, Botley invents a minion called a bootle. Happy with his creation, Botley tries to replicate his bootle. But when his plan goes awry, and he accidentally unleashes an army of minions, who begin to run amok, it’s up to the player to assist Botley in getting the bootle population under control.

“Our philosophy is that the kids are part of the show,” Maritza says. “You, as the player, are helping Botley. It’s kind of empowering.”

Gaming systems that use motion-tracking cameras for therapy purposes do already exist but they can be expensive and “kind of boring.” Maritza describes a typical therapy game where, for example, kids are instructed to follow an onscreen fish in a figure-eight motion in order to practice broad arm movements.

While the existing games might seem more appealing than floor exercises when a child is in clinic, they don’t pass muster at home. “The second it’s competing with television and other toys it’s rarely touched.”

By building plot, characters and reward-based incentives into the game—the things that make mainstream video games so much fun—the researchers hope to overcome some of these issues. 

And the games are designed to include players with different abilities.

“First, the actual navigation and controls of the game are much simpler to use,”  Maritza says. “We use a scanning system, so each menu option is highlighted one at a time and the child simply raises their hand or presses a single button to make a selection. Mainstream games often use navigation menus that require precise movements and targeting to make a selection and require several choices to continue with the game. Also, our menus and game instructions are seen in text and heard via narration so children can learn the rules even if they can't read.”

In addition, “the games are matched to the abilities of each player, making it much easier for kids like my brother to play. At the beginning there's a calibration where the system records how far the player can move their arms on the screen and how fast they can hit a target. For example, if a child can't reach the top right side of the screen, the system will record that and no in-game objects will appear in that location. And the difficulty settings, like speed of game objects, are adjusted to the ability of the player.”

In multiplayer games there will be a “skills match”  so that everyone is playing to the best of their ability with equal chances of winning.

Maritza says her own experience with difference has informed her thinking while working on the Botley game. In addition to growing up alongside a brother with autism and caring for a toddler with CP, Maritza herself was born with a cleft lip and palate, and was teased as a child. She believes this has helped her to develop an empathetic approach to her projects. She also spent time as a camp counselor for children with autism and Down syndrome. Working with children with a variety of conditions has allowed her to see disability as something multi-faceted, and to better understand the range of needs each individual may have.

Ultimately, the researchers hope the gaming system will accomplish two main goals: first, they would like the software to function as a fun way for children with cerebral palsy to reap therapeutic benefits. The ideal would be to see evidence that the game actually improves children’s range of motion.

The second aim is to provide inclusive, social play. “I think back to my brother and the exclusion he felt not being able to participate,” Maritza says. “We probably all dream of children having the opportunity to compete with friends and family members on an equal playing field.”

Elaine and Maritza have begun working with kids and families through Holland Bloorview's Children’s advisory council to test the game and they hope to repeat the experience soon.

At the end of the day, Maritza and Elaine hope that kids will find the technology fun. “It’s funny, we’re trying to get kids addicted to video games,” Maritza says. “To us, they’re beneficial. Other people may feel video games are bad, but we think they’re great.”

 

Thursday, October 8, 2015

She shoots, Cam saves!



By Louise Kinross
Cam Jenkins is Holland Bloorview’s family support fund and accommodations administrator. But in his spare time, he’s a goalie with the Silver Streaks—a co-ed sledge-hockey team that’s part of Cruisers Sports for the Physically Disabled, which operates in Peel and Halton.

BLOOM: What is sledge hockey?

Cam Jenkins: You sit on a sled with two skate blades underneath your torso and a rudder at the front. You have two mini hockey-sticks with picks at the end of the stick, so you can propel yourself on the ice. We’re taught to shoot with our left hand and right hand.

BLOOM: When did you begin playing and what is your disability?

Cam Jenkins: I began at 16 years old and I have spina bifida.

BLOOM: How often do you play?

Cam Jenkins: Right now we have three practices a week, of about one-and-a-half to two hours each. Then as the season gets going we’ll have one practice and one game each week.

BLOOM: What position do you play?

Cam Jenkins: When I first started I played forward and defense. Then I went to a tournament in Ottawa and because I was one of the most mobile in my sledge, they stuck me in goal. I've been playing sledge hockey now for 15 years with a small sabbatical while I went away to college and also lived in Whistler, B.C. 


BLOOM: Why do you play?

Cam Jenkins: I like being able to play Canada’s favourite pastime and be part of a team and work as a team to reach a goal. I went to a high school that didn’t have a lot of people with challenges, so at that time it was definitely a way to meet people in my community who had the same challenges as myself.

BLOOM: What does it cost?

Cam Jenkins: It costs $450 a year to become a member, and that includes ice time.

BLOOM: What do you like the most about playing?

Cam Jenkins: I love being a goalie became I’m the last line of defense. I’m either the hero or the goat. If I let in a bad goal I look bad upon myself. But if I make a beautiful glove save and everyone’s cheering my name and congratulating me, there’s nothing like keeping your team in a game.

My favourite part is just being around my teammates and helping them out because I believe that every player can be a part of the team, no matter what their role. I always encourage people to do what they’re good at. That could be blocking shots or being a goal scorer. If you’re not a fast skater maybe your role is to stay in front of the net while the other defenseman runs around and tries to get the puck.

BLOOM: Do you have to be good at sledge hockey to play?

Cam Jenkins: We want everyone to be able to come out and participate, whether they’re doing it at a competitive level or doing it at a social, fun level. We have different kinds of teams based on what you want to get out of it.

BLOOM: What age are the participants?

Cam Jenkins: Our youngest is six and there’s no upper limit. There are 12 to 13 players on each team and each team has a coach, assistant coach and trainer.

BLOOM: Is there anything else you’d like to share?

Cam Jenkins: The Cruisers are all about making sure everyone is included and feels a part of the team. I want to get across the point that everyone has a part on the team.

Tuesday, October 6, 2015

How to run parent-to-parent support

By Louise Kinross
Parenting a child with a complex, life-threatening medical condition and disabilities is stressful and isolating.
Some of the best support comes from other parents—whether it’s families sharing practical or emotional support on a hospital unit or a formal program that brings parents together.
Holland Bloorview’s Peer Support Best Practice Toolkit combines firsthand parent stories, peer-support models, case studies of Ontario programs, FAQs (and answers!) and a review of the research for parents and professionals wanting to start a group.
“Through case studies and talking to families we shed light on the very unique experience of families with very complex children,” says Julia Schippke, a knowledge broker on the Evidence To Care team at Holland Bloorview.
The toolkit was funded by the Ontario Ministry of Health and Long-Term Care. You can download it at the link. Section one of four gives a good overview of the project.

Monday, October 5, 2015

Inventive, accessible? That's what Spiral Garden is all about

By Louise Kinross

Many of you are familiar with Spiral Garden, Holland Bloorview's artist-run garden that brings children with and without disabilities together under a canopy of trees to tend an accessible garden, sculpt clay, work wood, make puppets and tell stories.

This past summer staff designed and built this innovative, accessible wash-up station for children to use to prepare food and clean up after cooking.


"In this solution, there's a plexi-glass shield to deflect water off the legs of those who use wheelchairs or who are standing," says Shannon Crossman, creative coordinator. "The length of the pipe allows for many children to use it at the same time. A course of split bamboo troughs transports the water to a rocky area for drainage."

Isn't that cool?