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Take a look, then look again

By Louise Kinross

Look at this illustration of an elephant. I couldn't stop. I kept seeing in the detail things that I hadn't initially seen.

This is one of my favourite sketches by Hanzhen Yap, a 16-year-old from Johor Bahru in Malaysia. Hanzhen's intricate drawings of animals, historical buildings and everyday objects like kettles have been shown in 27 art exhibitions.

Hanzhen has autism, and his parents taught him to speak and read by pairing words with thumbnail sketches that they drew together. As a young child they drew everything around the house.

"He draws primarily from photographs, even though he draws very much better if he has seen the object recently where, we believe, the image is still fresh in his mind," says his mother Yvonne.

I sent Hanzhen a list of questions about his art, his autism, and any advice he might have for other youth with disabilities. He's going to work on responses with his parents which we'll share in the next week or two.

Hanzhen just completed a commission for the Consul-General of Singapore in Johor Bahru.

I can't wait to share his thoughts on his drawing process. Stay tuned!

Son's death sparks a search for justice

By Louise Kinross

In 2013 Connor Sparrowhawk (with sister Rosie) drowned in a bath alone in a National Health Services assessment and treatment unit in Oxfordshire, England. The 18-year-old had autism, epilepsy and intellectual disability (referred to as learning disability in the UK). 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. Twenty months later, Connor’s mother Sara Ryan, a senior researcher and autism specialist at Oxford University, is still seeking justice for her son.

BLOOM: Tell me about Connor.

Sara Ryan: He was very quirky and quite eccentric. He had an enormously brilliant sense of humour. He loved transport—buses and coaches. He had a bit of an encyclopedic knowledge of history. He was very good with facts and figures and loved the legal system and the police. But he couldn’t leave the house on his own because he had no road sense and he couldn’t count to ten.

BLOOM: When did he go to the unit called Slade House?

Sara Ryan: He went to secondary school from 11 till he turned 18 and he was a delight really. Then when he turned 18, almost overnight, he got really anxious and very unlike himself. He was difficult to engage with, had lots of dark thoughts, and was in and out of school because he was aggressive. He began bashing his head against the wall and I was worried he was going to hurt himself or someone else. The night we admitted him he wanted to go home and they had to restrain him on the floor with four people face down and section him. In all his life with us, we’d never laid a finger on him.

BLOOM: You had concerns after he went in, specifically about him having seizures there?

Sara Ryan: He was part of a happy family and the minute he went into the unit, because he was 18, they treated him as an adult. We had to phone up to get permission from him to visit, which was very odd. They didn’t engage us at all and changed his medication. I visited and could tell he’d had a seizure because he’d bit his tongue and was very disoriented. They disputed that.

BLOOM: What happened the day of his death?

Sara Ryan: I got a call that he was unconscious and on the way to the hospital in an ambulance. When I got there the consultant said straight away that he was ventilated but there was nothing they could do. They switched off the machine while I was there. Two weeks later the NHS trust published in its board minutes that a ‘service user’ had died of natural causes.

BLOOM: At the time of his death, Connor had been in the unit for 107 days but hadn’t been assessed or treated. What were they doing?

Sara Ryan: He was there for 107 days and the psychiatrist saw him three times. The psychologist filled in some questionnaires, but they didn’t come to anything. They said they were going to do social stories with him, but they never did that. He was a school boy and they should have been taking him to school. But they gave him choices, so he’d say no and stay in his room and watch DVDs.

BLOOM: How did you get an independent investigation into his death?

Sara Ryan: Before he went into the unit I’d been blogging about our family's life with Connor. It was about all the amusing things he did. Lots of people subscribed to it and became very fond of him. When I posted one line on the day he died it went viral. And when we found out the trust was saying he died of natural causes—and was going to do an internal investigation that clearly wasn’t going to find out anything—we made a lot of noise online and eventually they capitulated.

BLOOM: What did the independent investigation find?

Sara Ryan: That it was a preventable death. The staff had the knowledge. 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. Twenty months later we’re still waiting for an inquest and the police are still investigating.

BLOOM: I understand the unit was later closed?

Sara Ryan: Nothing happened after Connor died and we contacted the Care Quality Commission. They were about to do an inspection there. They were so shocked by what they saw that they failed the unit on all 10 quality and safety standards and the trust decided to shut the place down. There was no battery in the defibrillator. It was dirty and there was no therapeutic environment.

BLOOM: What accountability do you want from the NHS trust?

Sara Ryan: We want the staff to be disciplined, as appropriate, and a corporate manslaughter charge brought against the trust. We want meaningful involvement at the inquest, which is provisionally set for Oct. 5. We also feel that the commissioners who were commissioning the service—which cost about $1,000 a day—have some role to play. The commissioners spend money on services that you wouldn’t let your dog stay at.

The mortality rates of people with learning disabilities in the UK are shockingly high.* Because the trust said Connor’s death was ‘natural causes’ we were concerned that learning disabled people might die regularly in hospitals and units and their deaths wouldn’t be properly investigated.

Through our campaign we had a meeting with the chief executive officer of NHS England and he agreed to commission a review into deaths since 2011 of people with learning disabilities and mental health issues in the care of the trust.

We want the law changed so that families don’t have to pay for legal representation at the inquest and we believe there should be an independent investigation if someone with a learning disability dies in a hospital or other secure setting.

BLOOM: In a report you produced, you wrote about the lack of humanity in how your family has been treated.

Sara Ryan: I think how they treated Connor was extended to us after he died. They stripped away any sense of him being part of a family and treated him as an object. Once he died they didn’t demonstrate any empathy or compassion or understanding for the pain they caused us and for all kinds of delays and obstructions and deceit really. It’s made what was such a horrific and unimaginably awful situation so much worse. For example, they had the trust’s barrister sit in at a pre-inquest review and try to argue that drowning is a natural cause of death.

BLOOM: What will your legal costs be?

Sara Ryan: Families in the UK don’t get any legal help for inquests and it will cost us almost $50,000. The NHS trust draws on public funds to arm itself with very good legal representation. We were able to raise the money we need through our social media campaign and selling postcards and other fundraising efforts, which is quite remarkable.

BLOOM: In your report you say ‘The ultimate barrier appears to be that learning disabled people are seen as less than human.’

Sara Ryan: Generally, in the way our social life is organized, our kids tend to go to special schools and leisure activities aren’t accessible, so people don’t come into contact that much with people with learning disabilities. The chance of having a job is low, so there isn’t a big community presence. When I started blogging about Connor I made him human in a way that he hadn’t been seen outside of his family and school. Even my colleagues started to chat with me about him. After the weekend they’d say ‘it was hilarious that Connor did this or that.’ They began to see that he was a quirky, funny young man. Ultimately we need to bring the human back so people can appreciate these kids as individuals like anyone else, who just have their own ways of doing and saying things.

BLOOM: You’d like to see more money allocated to community supports?

Sara Ryan: Assessment and treatment units like the one Connor was in have complicated costing arrangements and the money doesn’t tend to follow the person from the unit back to the community. Often the local authority has to find the cost of the support package. You might be able to stay in a place that costs $1,000 a day (indefinitely sometimes, a National Audit Report published last week found the average stay for someone in an assessment and treatment unit is 17 years), but when you come out the local authority hasn’t got the funding because of cuts to welfare costs. In addition, no one seems to know what good care looks like.

*A 2013 inquiry into the deaths of 247 adults and children with intellectual disability in England and Wales found women with intellectual disability died 20 years earlier on average than the general population and men with developmental disability died 13 years earlier. Over a third of the deaths could have been prevented with good health care.

Please see a talk Sara Ryan gave at a patient experience conference at the University of Oxford: How to hear voices that are seldom heard

Julia knows firsthand that every family is unique

Meet Julia Hanigsberg, the new president and CEO of Holland Bloorview (in photo with daughter Rachel). Julia comes to us from Ryerson University, where she was vice-president of administration and finance. Here she tells us more about her own family's experience with disability and how she's learning about the hospital "from the ground up."

BLOOM: What does your experience as a parent of a child with disability add to your role here?

Julia Hanigsberg: I think it gives me a perspective on the complexity of the lives of our clients and families and a real appreciation of how every child—and every family circumstance—is unique. I think that’s even more the case in childhood disability than in other medical settings. Our client population has so many different vulnerabilities and exceptionalities and I have a real sense of that and of what families go through in trying to achieve the best opportunities for their kids.

BLOOM: Can you tell us a bit about your daughter?

Julia Hanigsberg: Rachel is 18 and we’ve been through a journey of diagnoses with her. She was born prematurely at 29 weeks and has global developmental delay. Then 15 years later there was a new diagnosis of autism. She also has some associated mental health issues like anxiety. I know that the diagnostic world for our kids is often longer and not so straightforward. There are layers, and things emerge over time as our children change. The world in which we operate is not a ‘one-size-fits-all’ world.

Rachel is in high school and she’s a very typical teenager who loves YouTube and her music—very loud music—and her privacy and space and wants to be independent. Her school is a great fit and she’s very enthusiastic about starting co-op because she’s excited about the world of work. She loves to shop, so she thinks working in stores will be lots of fun.

BLOOM: What’s been the greatest challenge parenting Rachel?

Julia Hanigsberg: Two things. One is navigating the system and knowing what to do when. Knowing that you’ve explored all the possibilities, you haven’t left any stones unturned. It’s a two-edged sword because when they’re little, and even now, you don’t always know what the possibilities are. The nice thing about having a teenager is that they have their own ideas about what they want to do.

The other challenge is moving into the adult system and that transition point is a very serious concern. Rachel’s 18 now so we are right in the heart of that—thinking of what the long-term future holds. School will end and that will be an enormous point of transition for her. As long as your kid is in school you know that they’re well taken care of for a good chunk of the day. The path for my daughter after school is less clear.

I’m conscious of the fact that my experience as a parent is just one parent’s experience. For example, our experience is very different from a parent who has a child with an acquired brain injury—where in a moment everything changes for their typically developing child. I gave birth at 29 weeks and we had a long time to move into the world we were in.

I’m also very well aware of the privileges I have. English is my first language and I don’t have a job where taking half a day off for my daughter’s medical appointment isn’t an option.

BLOOM: Can you tell us about your background?

Julia Hanigsberg: I’m a lawyer by background. I think that’s a fantastic educational background for being a problem solver. You come out with a structured way of thinking about problems. Very little of my career has been spent as a traditional lawyer. I spent 10 years in the provincial government, mostly with the Ministry of the Attorney General and in the Cabinet Office doing policy and legislation-focused work. I was chief of staff to a cabinet minister so I have a broad view of the workings of government from a civil service, policy and political perspective.

Then I went to Ryerson and spent five years as the general counsel and secretary of the board and five years as vice-president of administration and finance. It gave me time to understand how big organizations work and how you make difficult decisions within the context of large organizations. One thing I took from my time as a trustee of the board at Holland Bloorview and applied at Ryerson was related to client- and family-centred care. Family leaders here are involved whenever there’s a big procurement decision. At Ryerson, we never would have involved students in that kind of decision. So when Ryerson put out a request for proposal for a new food management company I suggested we have two students on the selection committee. It was fantastic.

BLOOM: Why do you believe that social media is important in your role?

Julia Hanigsberg: Two reasons. One is giving people an opportunity to get to know me as Julia and as the CEO of Holland Bloorview and demystifying the role. People who follow me on social media and talk to me in the halls will see there isn’t a big disconnect. As much as I’m trying to meet every person, it’s hard to do that, so I want to find other ways to expand how I connect with the team that works here and with clients and families. The other is to be part of the ecosystem of sharing of quality Holland Bloorview information that I can disseminate out to the world. My experience with social media is that you frequently make connections online that result in incredibly valuable personal and professional connections. There is a richness there that not everyone appreciates.

BLOOM: Research shows that parents of kids with disabilities are at greater risk of depression and anxiety and physical problems. What strategies have you used in your own life to take care of yourself?

Julia Hanigsberg: It’s a struggle that every parent has, period, and our parents have much more complex families. The other area we read about is resilience—in our children but also in ourselves. Building up capacity for resilience is like building up a muscle. I think that’s quite inspiring and something to be really thoughtful about.

A lot of what we do personally is the normal stuff—eating well and exercise—because you know you’re going to have to absorb and do more. We’re very lucky in that we have a lot of family around us. Respite is so important. We do a lot of that here at Holland Bloorview for our clients and families. In my family, we have nephews and nieces and grandparents who are really involved. So my husband and I can go away for a weekend, pretty infrequently, but we can do that. The support of family also means we can spend time with our other kids. I have 14-year-old twins. So it’s building resilience for the whole family.

BLOOM: How can the hospital best support parents so they feel able to advocate for their child?

Julia Hanigsberg: I’ve been really impressed with our Family Leadership Program. I think the hospital’s investment in the leadership of families is extraordinary and they can take that into the rest of their lives. When I joined the board of trustees the family advisory used to meet in the boardroom but now they meet in the conference centre because they can’t fit in the boardroom. We’ve trained over 100 family leaders. There are also more informal ways like our Parent Talk groups where parents can create networks that help them learn.

BLOOM: What would you like our parents to know about your plans for the hospital?

Julia Hanigsberg: It’s too early to talk about plans for the hospital. Right now I’m learning and listening and focusing on having experiences as the way I learn. People have been incredibly generous in sharing clients and families with me, encouraging me to participate in clinical team meetings and huddles, to help me better understand how the hospital works from the perspective of families and our extraordinary team of staff. My orientation is to learn the place from the ground up, not from sitting in this office.

BLOOM: What do you see as the hospital’s greatest challenge? Greatest strength?

Julia Hanigsberg: I don’t think it would surprise anyone to know we’re challenged financially, and, but for money, there’s more we would do. Space is an emerging challenge. We’re not there yet, but at a certain point we’ll want to do things and be limited by the lack of space. I think the hospital has made smart, economical and efficient use of its resources.

Everyone in the place has huge ambition and that’s an enormous strength. Everywhere I go, people want to do more and better and I think my role is to find the path that allows them to achieve their ambitions for Holland Bloorview. I don’t need to set out the ambitions. Talk to anyone who works here and they’re excited about what they do and have a huge vision for what that could be.

For a window into Julia's first weeks at the hospital follow her on her blog or on Twitter @Hanigsberg.

Star-studded 'Serenade' benefits Beverley School families

By Julie M. Green

What does indie music have to do with children with special needs?

Toronto singer/songwriter Hayden Desser and his wife Christie Greyerbiehl worked tirelessly to marry the two for one extraordinary night last Saturday.

The result was Dream Serenade—a concert at Massey Hall to benefit children with developmental and physical disabilities at Beverley School in Toronto. The evening was spectacular, with performances from Feist, The National, Sarah Harmer and Billy Talent, to name a few.

Like many of us, disability wasn't on Hayden's radar until someone he loved—his daughter—was affected. And while much has been done to raise awareness of disorders like autism, there's a glaring lack of funding for therapies and family support.

Three years ago my son was diagnosed with autism at Holland Bloorview. Aside from a block of publicly-funded speech therapy, any support he's received has been paid for privately, by us. Friends and family are staggered when they learn that this is our reality. I know of too many couples forced to re-mortgage their homes or cash in life savings (assuming they're lucky enough to have savings) in order to afford programs for their children.

With my husband’s family overseas, and my own family living several hours' away, respite is virtually non-existent. And our son's needs are such that we can't get the neighbourhood babysitter to look after him while we take a much-needed break.

Demand for public services outstrips supply. Many children simply aren't getting the help they need, when they need it. Some are rejected for programs they should qualify for, while others sit on wait lists for years, missing out on early interventions so vital to their development.

When searching for childcare for his daughter, Hayden discovered firsthand how hard it was to find an appropriate program. Today, his daughter is a student at Beverley.

Hayden created the annual Dream Serenade to support this cause close to his family's heart.

Proceeds from the inaugural event will fund assistive technology and a custom green playground at Beverley School and also provide respite services to families.

When artists lend their voices to meaningful causes, the result is a thing of beauty. On Saturday night, the atmosphere at Massey Hall was electric.

But oddly, the highlight of the evening wasn't the Barenaked Ladies goofing around on stage. It wasn't the haunting tones of Matt and Aaron from The National, or the audience singing along to Feist's hit "1, 2, 3, 4." It wasn't even Hayden's moving tribute to his daughter in a new song.

No, the highlight was video footage of the lit-up faces of the Beverley kids during an impromptu jamming session with the performers the day before.

See you at next year’s Dream Serenade!

Julie M. Green runs a special-needs blog at Yummy Mummy Club. Check out the photo of her below with her son. Photo of the concert above by Farida Peters.

Two BLOOM folks come to town

By Louise Kinross

I met this amazing woman Helen Hoens (left) on Wednesday night. A year ago she stepped down as New Jersey State Supreme Court Justice, saying she developed the qualities essential in a judge by raising her son Charlie (right), who has severe autism.

This afternoon she’s speaking on a parent panel at the Geneva Centre’s Autism 2014 conference in Toronto. You may remember this BLOOM piece she wrote for us.

I met up with Helen and Montreal author Joel Yanofsky at a pub at the conference hotel. Joel wrote Bad Animals, about raising his son Jonah with autism, and spoke on a dad panel at the conference yesterday. Take a look at this BLOOM video he did with us about writing his book.

Can you imagine how fascinating it was to chat over dinner with these two folks? Helen is a brilliant firecracker and Joel is funny and thoughtful and honest.

Joy and grief: The dance

By D. Christine Brown

Three years ago today our son Lucas’s high fever and subsequent seizures sent us by ambulance to hospital where he suffered severe brain inflammation.

Thankfully he survived and is recovering nicely, albeit with brain injury that includes significant developmental delay and autism.

Every single day I juggle the intense feelings of joy I have with my son with immeasurable grief and resistance to the difficult reality of parenting him with his acquired disability. I feel left out of the real world of raising children when I see "typical" school kids everywhere.

This last week has been especially trying on my husband and me as parents. Lucas had a few minor "accidents" that required some first-aid attention which triggered Lucas's hospital memories of being poked and prodded.

Three years ago, Lucas was forced to endure endless IV changes and needles for bloodwork, screamed for hours on end with his steroid treatment, would get wound up in his IV from trying to spin out of the discomfort, shrieked in terror as the student eye doctor checked his eyes, and the list of horrors goes on...

So his new coping mechanism to deal with daily routines that involve touching him—such as changing diapers, bathing, brushing teeth or tending to "boo boos"—is to scream at the top of his lungs, kick non-stop and squirm. This means both of us have to physically hold him down while he shrieks in distress.

He transmits such terror in his prolonged screams that I fear the police will show up at our door. I worry that our neighbours must think we’re trying to beat him. Luckily, a script from his current favourite Thomas and Friends song has provided some relief. We tell him "Accidents happen now and again, sometimes just by chance!"

We both agree that Lucas’s resistance now is more about fear than pain, but it rips at my heart strings nonetheless.

This makes me reflect on our own resistance to Lucas's new life, post brain inflammation.

As parents, I believe we’re resisting the overwhelming responsibility of parenting Lucas after his brain injury—a degree of fear, uncertainty and change that most parents don’t face.

Since leaving Holland Bloorview as inpatients, each week brings new challenges, and we are worn down. We want a break from watching our child suffer needlessly, even if the suffering is sporadic. We want just the good and to leave the bad aside.

Instead of embracing the new and heightened responsibility, we feel burdened by it. We’re so relieved when finally things start to flow again, just to get slapped down by the next cold, fever, scrape, sliver, or trip to the dentist. Every normal life event brings such trauma into Lucas's life. We don’t know if it’s because it sparks memories of his hospitalization, or if it’s his autism or just his personality.

Lucas’s resistance to our helping him cope with daily activities makes me think about our own resistance to the reality of parenting a child with an acquired disability. And just as his resistance appears counterproductive to us, perhaps fighting our “new normal” makes things harder than they need to be. Reflecting on this three-year-anniversary, it strikes me that life has ups and downs. Ours are just more extreme, in both directions!

I believe my own current favourite Thomas and Friends song says it best: Every Cloud has a Silver Lining

Life is full of surprises, full of ups and downs

And so to have a silver lining, first there must be cloud

Every cloud is silver-lined, even when it rains

So don't get too downhearted, as things are bound to change

All you've gotta do is wear a smile and you will find

Your sun will shine

When you're feeling down it doesn't help to wear a frown

Never lose hope, you're sure to cope and you can carry on.

Just as Lucas resists what is uncomfortable, so we resist the discomforts of feeling responsible for Lucas's suffering.

We know we need to accept and take responsibility for our son’s behaviour while he’s at this developmental stage. But we can't allow ourselves to feel responsible for his or anyone else's feelings. We just have to keep doing what's right and show him the path of joy.

We have to be tolerant of life's ups and downs. This will in turn teach Lucas to accept his own ups and downs, and the fact that we can only control how we react to what life throws at us.

As I sit in this restaurant today waiting to pick up my son from school, writing this blog, the two songs that just played couldn't be more timely: That's Amore and L-O-V-E. I feel that it is fate—or my late grandmother, from somewhere in the universe—reminding me that our life with Lucas is all about love. Focusing on the joy and love will get us through the bumps in the road.

Lucas's mom has written for BLOOM previously: I am warrior mom: Hear me cry and roar. Follow Lucas's progress on twitter @LucasRecovers.

Furniture that fits every child

By Megan Jones

Despite the many sights in New York, it was children’s furniture that stopped Jason Nolan in his tracks.

While walking the city during a trip in 2008, the Toronto-based early childhood studies professor and some friends came across a striking Manhattan storefront. Behind the large window was a collection of kids’ furniture. Each piece was brightly coloured, each was different and individual. The group instinctively stopped and moved in closer.

As they examined the furniture through the glass, they realized it was handmade. Slowly, it dawned on them: the chairs and stools and rockers were custom pieces for kids with disabilities. Jason (photo centre) is autistic and one of his friends uses a wheelchair. The group was so fascinated that they knocked on the storefront’s door—they felt compelled to know more.

They were greeted by Alex Truesdell, founder of the Adaptive Design Association, who invited them up and explained her project to make custom adaptive devices for children. Jason’s first thought was that the furniture must be expensive. It was, after all, made and sold in New York. But, Alex told him, it was actually the opposite—they were giving pieces away for free if families couldn't afford them or if there was no funding. After all, they cost less to design and build because each object was made from cardboard.

As he walked out of the studio, Jason began conceptualizing how he could bring these devices to Canada. Over the next few months he returned to New York to learn from Alex and her team. After being taught how to make a few pieces, Jason started to build his own in Toronto.

Parents took immediate interest. “We had people saying ‘I need something right now,’” Jason explains. So he teamed up with a student at Ryerson University, where he works, and began to experiment with building on campus. They bought a set of tools and used cardboard from recycled student projects to make their first prototypes.

Initially, they designed a corner chair—essentially three pieces of cardboard in the shape of a two-faced, hollow tetrahedron. The chair was made custom for a three-year-old girl who could not sit up independently, and had previously needed an adult to hold her while she played in the sandbox. When the girl attempted to play with other kids while being held, they ignored her.

But once she could play on her own using the bright orange and yellow chair that Jason and his student designed, other kids no longer registered her difference. Within minutes, they began communicating, and brought their games to her. One of Jason’s graduate students documented the group of kids over the course of a year as part of her thesis. She found that during that time, the girl’s preschool classmates continued to modify their play without having to be asked.

For Jason, that is what adaptive design is all about: changing the environment the child is in, as opposed to changing the child. “For me, children aren’t disabled, I’m not disabled,” he says. “Society disables us. The problems that children with special needs have are created by society. Either by how we physically build the space, or how we engage other people.”

To Jason, cardboard is the best material to use because “it’s the greatest visual metaphor,” he says. “It’s a discarded thing. And people with disabilities are largely discarded.”

But it also has practical advantages. Cardboard is available essentially anywhere in the world, he explains, and it doesn’t necessarily require expensive tools to build with. Without scissors or a blade, someone could rip cardboard using their hands. Without access to glue, a would-be builder could use leftover rice water as an adhesive.

“It’s not got any sort of colonialist baggage. It’s equal for us all. But it’s also reminding us that we should be looking at all the objects in our lives to figure out how we can change them to be useful for us.”

Despite its potential simplicity, very few people are doing adaptive design, and designers are geographically spread out. Jason and his students at Ryerson work closely with Alex's design association in New York—the professor recently joined their board of directors—but for the most part groups are few and far between. One of Jason’s goals is to create a global social network so that everyone experimenting with designs can communicate. He recently submitted a research proposal to build an adaptive design studio in Ghana. Earlier, the Ryerson Lab was visited by students from Japan. But, Jason says, innovation moves too quickly for groups to be in occasional contact.

“It’s not enough just to get information out,” he says. “We have to have a two-way continuum. As soon as someone learns something from me, they’re going to say, ‘That’s nice. I have a better idea.’”

Today, Jason directs the EDGE Lab in a newly renovated workspace in the Bell Trinity Square Building behind the Eaton Centre. He still works with a group of students, but their designs have expanded beyond custom furniture. Jason’s space is littered with piles of prototypes, which he shows off enthusiastically: open source computer hardware, a shoe designed to warn people with low vision about tripping hazards, a 3-D printed prosthetic arm.

None of their designs are mass-produced or sold for profit yet. At any time, about a dozen people are working on designing and building, but since they’re students, the groups turn over nearly every 13-week semester. Parents requesting specific devices for their children go through the university. Jason’s biggest challenge is figuring out a way to harness enough builders to meet the volume demands from parents. “I’d love to be running off two or three of these a day,” he says, pointing at a corner chair. “But we’re not there yet.”

Still, Jason hopes that some objects will be commercialized. One student, for example, recently created dollhouse–sized furniture that looks like the real-life pieces Jason and his team build. They are looking to mass-produce the toys at cost and sell them to daycares, with the hope that if children get used to playing with adaptive technologies from a young age, they won’t view them as a sign of difference later.

Jason also plans on outsourcing assembly of the real-life furniture as well. He’d like to be able to sell pieces to families at an affordable rate, not for profit. His ultimate goal is to work solely on design, and have someone else manage the business aspects.

Until then, he will continue to push for a change in attitudes by doing what he does best: making and creating. “Being autistic, I still primarily make sense of the world through physical exploration,” he says. “I communicate by making something for somebody.

“Everyone needs what I’m doing. We’re all going to need some kind of custom adaptation at one point in our lives. The difference is children with special needs can’t function without it.”

Photos by Annie Sakob and Jason Nolan