'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.   

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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.

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

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

BLOOM: How did you get the idea?

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

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

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

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

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

BLOOM: Who is working with you on the project?

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

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

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

BLOOM: Can you describe the plans for the playground?

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

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

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

BLOOM: What is the cost of the project?

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

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

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

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

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

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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!
 

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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! 

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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.”

 

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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.

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