New takes on disability and adaptation

By Louise Kinross

There are so many wonderful media stories on new ways of thinking about disability and adaptation at the moment.

Let's start with this interview with A. Laura Brody in VoyageLA. Laura is a costume maker and designer who "[re-imagines] wheelchairs, walkers, and mobility scooters as works of art," she says. "My interest in mobility devices came from dealing with a former boyfriend's stroke. I was fascinated by wheelchairs, walkers, and any other devices that help people move and adapt. However, I couldn't understand why their designs were so cold, clinical and hideous. They were almost insultingly ugly." I pulled the photos above of a wheelchair Laura turned into an Edwardian throne from her website Opulent Mobility.

This afternoon I heard another wonderful CBC Tapestry episode hosted by Canadian singer songwriter Christa Couture. BLOOM interviewed Christa in the spring, after a maternity photo shoot she did with her prosthetic leg went viral. Christa had her leg amputated as a young teen to treat cancer.

Last month Christa did a series of Tapestry interviews on Rethinking Disability. They include a talk with Eli Clare, author of Brilliant Imperfection: Grappling with Cure, who is an American poet and activist with cerebral palsy. "On an individual level, my cerebral palsy is defined as 'trouble,' both medically and culturally," he says. "And yet, I don't have any idea who I'd be without tremoring hands, slurring speech, tight muscles and a rattling walk. So the idea that my cerebral palsy could be cured, in other words taken away as if it never existed, would totally and completely change who I am." This interview blew my mind.

Christa also interviewed Halifax sex educator Kaleigh Trace on how she came to love her body, including a disability she acquired in a car accident as a child. And Christa talked with Toronto's StopGap founder Luke Anderson on the merits of identity first vs. person first disability language. 

The Tapestry episode this afternoon included a candid interview with Amy Silverman, author of My Heart Can't Believe It. Amy is an American journalist who learned she wasn't as accepting of diversity as she thought when her daughter Sophie was born with Down syndrome. "We all have something that rocks our world ... that is a challenge that we think we could absolutely never meet," she says.

Finally, this Tapestry interview with Simon Paradis, a musician who suffered a severe brain injury in an accident, and his wife Kara Stanley, explores how the Canadian couple try to embrace a new normal. "There are moments when I'm playing at a gig, and I look at my left hand and think I'm going to play this Jimmy Page rift that I really like, and all of a sudden my fingers do something completely differently from what I'm actually trying to think of...' Simon says.

I think Christa Couture deserves her own CBC program to explore disability and adaptation.

Here are some other films and articles worth a watch or read.

Between sound and silence, The New York Times
This is a fabulous short film where adults who are deaf describe what it's like to live with cochlear implants.

Children are being euthanized in Belgium, The Washington Post
An opinion piece about three children given lethal injections in Belgium. They included an 11-year-old with cystic fibrosis and a 17-year-old with Duchenne muscular dystrophy.

Matt, Healthy Debate
A fascinating interview with Matt, a young man who becomes a personal support worker for another young man who has quadriplegia and uses a ventilator after breaking his neck in an accident. I'm not sure why Matt's last name isn't identified?

Rich Donovan was the only trader with a physical disability, The Muse
Rich has a new book coming out called Unleash Different: Achieving Business Success Through Disability. Here, he talks about working on Wall Street as a portfolio manager and how he created some workarounds, because his voice can be difficult to understand.

Boy with mystery condition is worshipped as a god, Born Different
A six-year-old Indian boy with disabilities is worshipped by locals who believe he is the reincarnation of the Hindu god Ganesha.  

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Every kid deserves a pair of jeans

By Megan Jones

In the summer of 2013, Mindy Scheier was faced with a problem. Her son Oliver, then nine, wanted to wear jeans to school.

Oliver, who has a rare form of muscular dystrophy, has trouble using buttons and zippers. He also wears leg braces, which don’t fit easily under restrictive fabrics like denim.

Mindy, who lives in Livingston, N.J., had a choice: she either had to tell her son he couldn’t wear the clothing he wanted, or send him to school without leg braces and risk that he might not be able to use the bathroom by himself.

“It was terrible,” she says. “I felt like I just didn’t know what the right thing to do was. Oliver views himself as a typical [child]. So he was completely confused as to why it was even a question whether he could wear jeans or not.”

In the end, Mindy let her son wear what he wanted. But the worry she felt as she sent him to school got her thinking about how limiting mainstream clothing was for children with disabilities. A fashion designer by trade, Mindy had adapted some of Oliver’s clothing in the past so that he could wear it comfortably. But the mom of three wondered how parents who didn’t have the sewing skills to modify off-the-shelf clothing managed to dress their kids with disabilities.

Then Mindy had a brainwave. Instead of thinking it was her responsibility as a parent to modify clothes that already existed, why didn’t she insist that companies create children’s wear that was adaptable in the first place?

With that idea in mind, Mindy, who in the past has worked for big names like Saks Fifth Avenue and Macy’s, decided to combine the two things she knew intimately about: clothing and disability.

Within a few months, she launched Runway of Dreams, a not-for-profit that aims to convince larger mainstream labels to produce adapted versions of current, fashionable clothes for children with disabilities. The company’s philosophy is simple: Kids deserve to wear whatever they want to wear. And it’s time for the fashion industry to step up and help them do it.

“We have plus-sized department and petite departments and maternity departments,” Mindy says. “And we have nothing for the differently abled community? It is so mind-boggling that this has not been done yet.”

Runway of Dreams isn’t the first company aimed at designing clothes specifically for kids with special needs. Other adapted clothing options exist, but they’re limited, often expensive and seldom trendy. Mindy hopes her project will ultimately give more people easy access to affordable clothes kids will actually want to wear.

Since she came up with the idea a year-and-a-half ago, Mindy has reached out to others to get a better sense of the range of clothing needs kids with disabilities have. She started with a large Facebook survey, which received answers from parents and children all over the world.

The survey revealed that people with disabilities struggled with three main things when it came to dressing. The first was fasteners: buttons, snaps and zippers seemed to be a problem for nearly everyone across the board. The second was the way clothing needed to be put on—kids with cerebral palsy or muscular dystrophy, for example, have low muscle tone, and can’t easily lift a sweater above their heads. The final issue was the ability to adjust the garment to fit—especially important for those with differently shaped bodies, and those with equipment like leg or back braces.

Using this information, Mindy designed a few prototypes and tested them with a group of high-school students and their parents at a school (see photo above). She partnered with Maura Horton, a Raleigh, N.C.-area woman whose company MagnaReady produces washable magnets that can be used in clothing.

They modified pieces with magnets—like a dress-shirt that opens along the back, allowing the wearer to slip their arms inside, and fastens easily.|

“It was one thing to talk to people but another to have them judge, feel, see the modifications that were made,” Mindy says.

Participants’ reactions confirmed for Mindy that Runway of Dreams was an important project. One boy with muscular dystrophy travelled an hour-and-a-half just to participate in the group. He told Mindy that he’d recently been accepted to Harvard, and that what he wanted most for his first day of university was to wear jeans like a typical freshman.

“Being able to wear what you want brings you personal confidence,” Mindy says.

“Differently abled kids are constantly being told, ‘You can’t play that,’ or ‘You can’t wear that.’ I think it will resonate that someone is saying, ‘You know what? You can actually. We’re going to make it happen.’”

So far, Runway of Dreams is in talks with one large clothing company, which Mindy hopes will lead to an official partnership. She’s also reaching out to other designers and manufacturers. Since adapted clothing caters to such an underserved market, she believes it’s in companies’ best interests to get involved.

“Forget about the feel good aspect of it,” she says. “There is a huge population of people out there that are ready and waiting for something like this to happen. They’ll spend their money on it.”

One day creating accessible clothing will be mandated, she predicts, and all companies will have to make a percentage of their clothing adaptable.

Until then, she’s pushing them to get involved. “As a mother, whether your kid has a disability or not, you know how hard it is not to have your child feel good about themselves,” she says. “I’m asking everybody to spread the word because we can make this happen together.”

At the very least, Mindy’s project has left her son (below) hopeful.

“Oliver and I were just interviewed on CNN,” Mindy says. “He ended the interview by saying, ‘I told my mum how lucky she is that I was born with muscular dystrophy. Because we wouldn’t be where we are right now if I didn’t have it!’”

To check out a great video on Mindy's work, or become more involved in the movement, visit Runway of Dreams.  

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Taking steps, together, with 'Upsee'

By Kara Melissa Sharp

When I first heard about the Upsee, I knew I wanted to be a part of the trial. A device that would allow Sebastian to walk with me, attached to a vest and harness, just made sense. Ever since he was a baby and first started to bear weight and walk, we were holding him up.

He does not have the upper body strength to do it on his own, his muscles cannot work together and give him the balance and strength he needs, so we were that strength.  

Hunched over, we held him up, hands under his torso, so he could move one leg in front of the other, because that’s what babies and toddlers do. They learn to walk. We were so excited at his ability to move his legs but what made us happier was his own happiness and the excitement he felt with each step.
 

Fast forward to today. Sebastian is almost six years old and uses a wheelchair to get from one place to the next. He also uses his Kid Walk walker to walk the halls at school and around our home on the weekends. He especially likes walking outside in the summertime and kicking a soccer ball around. Although his Kid Walk does have a fairly open front, he is still very well supported, which means he’s surrounded by the equipment itself. He still gets excited with each step and loves moving around. It give him a sense of independence.

But we can’t take his walker everywhere. He can’t get up a hill in it. It doesn’t fit in our car with his wheelchair and luggage when we take a road trip to see his grandparents and cousins every few months. It stays at school during the week. This piece of equipment that gives him independence, as well as therapeutic exercise, has its limitations. When we take a walk to the park as a family, Sebastian is in his stroller and his dad gets him out and helps him walk from the swings to the slide. He is hunched over, hands under Sebastian’s arms, holding him up. He then goes down the slide with him, or sits on the swing with him.

Including Sebastian in everyday activities that all children his age experience is important to us. We modify whatever we need to to make it work. As Sebastian grows, even though he loves to cuddle, he doesn’t necessarily want to be carried everywhere. As a young child, it’s also important to me that he’s not in his wheelchair all the time. Especially when he was in pre-school and his peers would often engage in play at floor level. I want him to be in different positions to help him grow and develop. I want him to be invited and included in his peer groups whenever possible.

Enter the Upsee. A product invented by a mom whose son also has cerebral palsy. A mom who wanted to walk around the neighbourhood with her son, but didn’t have access to equipment like a Kid Walk. A mom who wanted her son to learn what his legs were and what they could do. A mom who wanted to go camping and involve her son in family activities. 

The Upsee is a vest, harness, waist belt and double set of sandals. It is a device that allows a child to stand tall, while being connected to a parent who holds them up, hands free. Both feet are side by side and the action is similar to a child standing on your feet to dance, but they are parallel instead. You work together to walk together. But your arms are free, and your child is facing the world, no barriers.

The first time I used it, I struggled. I wanted to walk and I wanted Sebastian to walk. Instead, I had to wait for his cues. I had to be patient and let his feet take the lead. Otherwise we wouldn’t be in sync. Once I realized this, I could feel his left leg struggle since his hip is somewhat displaced. I felt his right leg leap forward with ease. And we walked around our home. 

We walked through places that his walker doesn’t fit. He saw things from a different perspective. We counted steps and he got excited, picking up the pace a bit. When he tired, we stopped and stood together for a break. As we did so, his younger sister came toddling up to him, threw her arms around him and gave him a big bear hug. After the shock of such a spontaneous interaction between my children, I helped him hug her back. The following week, his sister asked me to stand Sebastian up every day when he came home from school so she could hug him. She can’t hug him when he’s in his walker. And often, she’s trying to help push and steer him. When he’s in the Upsee, she comes and grabs his hand and walks next to him.

Recently, I was invited to attend the Upsee launch in Northern Ireland with a group of other parent bloggers. I took my family and the Upsee with me. We decided to make it a family holiday and did some touring around, including a trip to the coast and the Giants Causeway, which is full of hexagonal shaped rocks leading into the water, like a bridge trying to connect Ireland and Scotland. Although the path to the Causeway was paved and accessible by bus, we chose to take Sebastian in the carrier and brought the Upsee along with us. Once there, he was able to walk along the rocks with his dad (see photo above). I also carried him on my back in a carrier and enjoyed that. But it was difficult for him to see over my shoulder all the time.

When he was in his Upsee, he could feel the sun on his face, felt the uneven ground beneath his feet. His chest was stretched wide open in his vest, which is important since he tends to hunch forward, especially in the carrier. At one point a new friend asked us to pose for a photo. Suddenly, I was overcome with emotion. Here we were, all standing together, in an exotic, rustic locale. I wasn’t holding him. We weren’t crouching down to be next to his wheelchair. We were all standing there. Together.

After the Upsee launch, the media posted a photo of three beautiful children, whom I had the pleasure of meeting, standing tall and taking steps in the Upsee with the support of their parent behind them. The photo has gone viral in the special-needs community. Everyone is very excited about the opportunity these children have to explore the world around them in a new, very inclusive and interactive way. And everyone wants one for their own child. I am so excited to be a part of the buzz and help get the word out about the Upsee.

I had the pleasure of meeting the team behind the Upsee and touring the factory where it is made by local folks in Belfast, making a living wage. The company believes in its product and wholeheartedly wants to make life more accessible for kids with physical disabilities and make sure they can be included. It feels wonderful to be a part of something that can change the lives of so many families. Yet despite all the positives, I have read some negative comments about how the Upsee is trying to ‘normalize’ these kids into walking in a society that places such importance on walking. Although I can respect this point of view, I don’t see the Upsee in this way at all.

I see the Upsee as an accessory that can make certain things, like travelling and off road adventures, more accessible. I see it providing Sebastian with therapeutic exercise which is especially important when we are away from home and don’t have access to his walker or other standing equipment. I see us taking it to the park so that his dad doesn’t have to bend over to hold him up to walk around, taking a break from his stroller and interacting with his sister and other children.

I don’t see it as something that is trying to ‘normalize’ children who cannot otherwise walk. I don’t think that it says walking is better than using a wheelchair. I see it as something that can complement our lives, which can otherwise be restricted by obstacles. I think it also supports independence, even while being supported by an adult. I don’t think it says, "You are broken, I’m going to fix you, because walking is better." My son loves walking. He wants to walk. He needs help to do it.

He also likes being in his wheelchair, probably because we refer to it as his Red Racer and he goes fast in it. But also because it gives him the support he needs to eat and do another activities he cannot do independently, and he knows that. The Upsee is designed for children aged two to eight. This is a huge time period for development for children. Having access to different positions, experiences, and peer relationships is imperative for optimal growth. The Upsee helps with all of these.
 

I see Sebastian’s happiness in walking and interacting with the world around him in a way which feels free of barriers, echoed in the smiles of the other children I have met using the Upsee. I want my child to be included, in everything. And the Upsee helps make that not only possible, bit easier. 

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What works in the clinic may not work in the real world

By Steve Ryan

Most people assume that technology is a game-changer for children with disabilities. Using it helps kids to walk faster, wheel further and communicate better. You can see the difference it makes. It levels the playing field. It turns disability into ability.

Or does it?

Why is one in four assistive devices abandoned by families?

Why do 50 per cent of Canadian parents with children who lack functional speech say that none of their child’s communication technology needs are met and a further 20 per cent have only some of these needs met?

Why do more than 3,000 American children who use wheelchairs and walkers have serious falls that result in trips to hospital emergency departments each year?

We do not know.

What we do know is that assistive technology can be pricey. This is partly because many devices must be custom-made or individually adapted by clinical teams. It’s also because the market for these products is small and spread out geographically.

We are fortunate to live in Canada. Our healthcare system provides universal coverage for medically necessary services based on need rather than ability to pay. Provinces must meet the conditions set out under the Canada Health Act to get an annual share of $30 billion dollars in federal funding for their health insurance plans.

Yet the Act is silent on what services are medically necessary. That’s why provinces vary widely on which technologies they fund.

Ontario’s coverage is substantial compared to many. The province funds about 75 per cent of most “essential” assistive devices for everyday activities. Wheelchairs, walkers, speech devices, powered prosthetic hands, and ankle-foot orthoses are among 8,000 devices co-funded by the Ontario Ministry of Health and Long-Term Care through its Assistive Devices Program.

The program requires rehab professionals with special training to assess device need, discuss options with children and families and prescribe equipment. Families must buy or lease their devices from registered dealers to get provincial funding. Technology teams must also teach children and their families how to use some devices.

With all of these checks and balances, isn’t it reasonable for families to expect that these essential technologies will work?

As a research engineer at Holland Bloorview in the ‘80s and ‘90s, I teamed with therapists, families, and manufacturers to develop better wheelchair seating, custom car seats, and special toilet seats for kids who needed support to sit. 

Under controlled conditions, we showed that kids who used our seating devices sat straighter and wheeled a chair better. We crash tested our special car seats to prove they were as safe to use as car seats sold in Toys-R-Us. We demonstrated that kids could sit on (and use) our toilet seat product on their own without being held by Mom or Dad. 

We assumed that this meant that our devices worked—and that they would work the same way in the real world, in family’s homes and communities.

We think differently now. We recognize that benefits we observed don’t necessarily translate into lasting changes in how a child functions in the real world.

The International Classification of Functioning, Disability and Health (ICF) is the World Health Organization’s framework for thinking about measuring function: a child’s ability to do and take part in everyday activities. The ICF views function as an outcome of the interaction between the child and his environment. It considers technology as an environmental resource that can influence a child’s everyday activities.

So we think more now about how devices help kids and families do the things they want to do. Our teams consider how and why technology may help kids develop and their families live better.

We are developing much better ways to measure functioning that may be affected by devices. We ask families questions that go beyond “How much do you like the device?” We focus questions on activities that may change after getting new or different technology. 

For example, we want to learn how communicating with friends and asking an unfamiliar person for directions changes after getting a new communication device. Or whether, with a specially-designed seat, a child can now sit at the table to eat dinner with the rest of the family.

Of course we realize that we need to give children time to learn how to use a device and for families to work it into daily routines to really understand its influence. Important life changes may take days, weeks, or months to see. Sometimes changes may not happen. And sometimes no change is a good thing. For example, technology may enable a child with a degenerative condition to maintain an ability he or she would otherwise lose.

We know that products and services may affect children and families in different ways. Our teams observe and ask questions many times before and after kids get their devices because how they use them may change with time and among family members. The tricky part is being able to understand how much change is due to the child’s device, something else we measured, or something we may have missed. 

For example, consider a mother with young children in a small apartment. She may decide that even though a special seat that allows her child to sit independently on the toilet works, the product is too bulky to store when not used. She’d rather hold her child on the toilet.

Or perhaps stress in the family—a sibling birth or a return to full-time work—means that parents can’t follow through in supporting their child’s use of a communication device. So technology that seemed to support a child’s communication needs loses its impact at home.

Sometimes parents working on many goals with their child that involve technology and therapy simply can't do everything at once. 

This is why we need to ask lots of different questions and use different strategies to study the impact of technology.

Exploring the difference it makes will give researchers, service teams, manufacturers, policy makers and families clues about how, when, and what devices should be used, recommended, developed and funded.

Most important, understanding functional outcomes will help us to predict when technology that works well in the clinic will work well in real life for children and families. 

Steve Ryan is a senior scientist in the Bloorview Research Institute.

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Making the sea accessible

A Greek man who became disabled as a result of an accident inspired Seatrac -- a device that allows him to get into the water on his own.

A great way to mark International Day of Persons with Disabilities today, which is about removing barriers. The World Health Organization reports that 15 per cent of the world's population -- or one billion people -- live with disabilities.

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Imagine...a doll with pink hearing aids!

A fuscia pink wheelchair and hearing aids are part of a new American Girl line of accessories that includes purple sunglasses, earrings in the shape of pets and a flower-power purse.

Brilliant!

But after noting that these items allow kids with disabilities to see themselves in their toys, and help normalize differences for all children, Jezebel writer Dodai Stewart questions whether the company isn't focusing too much on "ultra-customization" -- instead of allowing girls to imagine themselves in a different time and culture.

"Does it put too much emphasis on the individual?" Stewart writes. "Is it all connected to this new selfishness, the kind of parenting that insists every child is a special snowflake, worthy of praise just for existing?

Huh?!! wrote Ellen at Love That Max this morning, which is where I heard about the story.

Stewart continues: "It seems like, with the original history-oriented American Girl Dolls, the doll was a time-machine friend, the book taught a lesson, and you didn't have to be black to learn from Addy, the girl who escapes slavery during the Civil War."

Yup, that makes sense.

But Stewart then questions whether the custom dolls mean "there's less interest in exploring different cultures."

Whoa!

News flash: Disability is a culture, an identity, a minority group that is devalued. Why does Stewart assume that only a girl who wears hearing aids or uses a wheelchair is going to purchase these accessories?

What about the girl who hears fine but want to imagine, through her doll, what it's like to wear pink hearing aids and speak with her hands and her mouth?

Isn't that the same as pretending you're the girl escaping slavery in the Civil War?

How is it any different?

For the first time millions of little girls (and boys) are going to be able to use their play in a way that opens up their minds to greater diversity.

Every child is a snowflake, and the more we encourage kids to create stories and play about all variations of those intricately-patterned crystals, the better. There isn't anything selfish about that.

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Choosing Carter's voice device

Today we have a guest post from Stacey Moffat, a teacher, writer and mother to three, including Carter, 8, above, in Kitchener, Ont. I was interested in the topic of voice devices because we are pursuing one for Ben. We have abandoned many in the past because we always found the technology archaic and clunky and a disincentive to using. It seems that different programs are popular in different geographic regions. Tell us about what your child uses and why! Thanks! Louise

Choosing Carter's voice device
By Stacey Moffat

I gazed at the symbols on the voice output device shown to me by the speech therapist and I felt perplexed. The symbols were abstract and I found the system confusing.

I was used to picture symbols where one picture represents one word. Nouns of course, were easiest to represent: dog was shown by a picture of a dog and apple a picture of an apple. For more complex words like ‘in,’ positioning was shown with an arrow pointing into a box.

The language on this device was Minspeak. With Minspeak, the relationship between the symbol and the word it represents is not always obvious. For example, on this device the picture of a mountain with the sun going down behind it meant ‘get.'

To me, having a system that used pictures that didn’t clearly represent the meaning of each word seemed confusing. Unfortunately I wasn't given a thorough explanation about how Minspeak and Minspeak Application Programs work. Instead I was told that it wouldn’t matter what system I chose for my son because he would do well with anything.

But, I thought to myself, if I can’t understand the language and symbol set on a chosen device how would Carter, a boy with a developmental delay?

I decided to move forward with choosing a device based solely on size, thinking that portability was top priority for Carter. He is mobile and a very active boy. I wanted Carter to be able to take his device wherever he went.

Thankfully, before any paperwork was put in place for obtaining a device, I travelled to Pittsburgh for a conference put on by CASANA where I attended a workshop about Augmentative and Alternative Communication (AAC).

Here are some things I learned at the workshop that were tremendously helpful and steered me away from focusing on size and portability and instead toward choosing a system that fosters language development and maximizes language output.

I learned that portability and compactness do not necessarily go hand-in-hand with user friendliness and easily accessible language.

I learned that the more words that are accessible to the user on the main page of a device the better – these are called core words. They are words that are used frequently and repeatedly in the English language (e.g. want, put, get, me, my, here, there, etc.). It is most advantageous for users to have as many core words accessible to them as possible.

It was explained to me that having a variety of pages set up with different themes (a page for playing cars, a page for circle time at school) can become cumbersome to users. Systems with this type of set-up are often abandoned because users get tired of having to navigate through a web of pages in order to say what they want to say. Having several pages to sort through slows down the output of speech which can cause frustration. Never mind the fact that caregivers, teachers and therapists can often spend hours programming devices with vocabulary around specific activities only to have the child use the programmed words on a very limited basis.

I learned that there are just too many words in the English language to have every word represented by one picture. Add to that the fact that not all words lend themselves to being represented by a picture. This takes us back to my earlier example where ‘get’ was represented by a picture of a mountain with the sun going down behind it. With Minspeak certain pictures can represent up to five different words.

Minspeak Application Programs can seem quite overwhelming and difficult to understand. However, if you are willing to take the time to learn about them through direct experience you soon discover that while Minspeak is a language unlike any other, it is logical and well organized.

The clincher for me was the fact that systems using Minspeak focus on language development, not just language output. For children with limited speech that means becoming competent with language so that they can build sentences word by word. Unfortunately this process does not allow device users to speak as rapidly as those with typical speech. However, by learning to build his own phrases, I feel that Carter is more empowered when expressing himself. Rather than being limited to pre-programmed sentences that someone else has put in his device he is learning to voice his own thoughts and opinions, and how he feels about something.

There is an application that allows the Minspeak language system to be downloaded onto your home computer. By downloading the program you can then play around with the system and get to know it and understand it before committing to this type of set-up for yourself or your child. Having it accessible on a computer can be helpful for therapists or others who work with your child because it enables them to get to know the system and also gives them a system on which to model language building for the user.

When Carter’s voice output device finally arrived, it would have been icing on the cake if he'd punched the buttons in order to tell us what he’s had on his mind all these years. Unfortunately that was not how things unfolded. Carter has a lot of work ahead of him. There are still significant gaps in his expressive language. At almost eight years old, he is very much like a toddler learning about, experimenting with and building his language skills.

When I explain Carter’s language challenges to those who are interested I like to compare his situation to that of someone trying to learn French or any other language. Learning a new language requires numerous lessons and a lot of practice. Learning to use a voice device with the Minspeak language is no different.

I’m thankful that I took the time to do more research about Minspeak. Carter is extremely motivated by finally having a voice with which to express himself and he is building his language skills one step at a time.

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Freedom for my daughter






















I'm delighted to share another post with you from a parent member of Holland Bloorview's Family Advisory Committee. Louise


Freedom for my daughter

My daughter (above) is a fabulous, bright and fun little girl. She was born with athetoid cerebral palsy. She is affected in all limbs, as well as in her speech and overall control and balance. She will be six this summer.

Last year we began working with a doctor in a coaching role, to help coordinate our daughter’s therapies and organize our goals.

When she was four, she was seeing six different therapists and going to over 10 therapy sessions a week. At the same time, she was not making progress and anything new we wanted to try caused tension with the therapists we had.

With the help of the coaching doctor, we got focused and took control of the therapy program, working on measurable goals that were a priority for us and having all our therapists work together to create a plan for our daughter. There was improvement almost immediately – in our daughter’s strength and abilities as well as in our stress levels. It was and continues to be a challenge to get our therapists to communicate effectively, but it's worth the effort.

Last summer the doctor encouraged us to try it a water exercise program she had developed. We had never tried anything like this and were excited to try something new. We got our daughter a hydrofit wet vest -- a unique wet suit style floatation vest designed for athletes, so that she could do deep-water jogging three times a week. We hoped to improve her balance, encourage reciprocal motion in her legs, and build up strength and stamina.

The improvement was phenomenal. Our daughter had been taking swimming lessons for a year but it was a challenge because she had trouble controlling her body in the water. It seemed that when she went into water she became more spastic and had more uncontrolled movements than on land. Generally, she can sit well on a chair or bench, but when the swim instructors wanted her to sit on a table in the water with the other kids, she couldn’t keep herself up. Floats and glides were difficult even with a lot of assistance.

The wet vest changed all that. My daughter could sit easily on the table and float and glide on her back with minimal assistance. Needless to say, her swim instructor was pleased. The vest provided my daughter with just the right amount of input and floatation. It was so much better than a typical life jacket, which would just tip her right over.

When we first started with water jogging, my daughter had trouble keeping herself upright, even with the vest. It was a new experience and it took time for her to learn this new skill. She quickly progressed to being able to keep herself upright for two to five seconds before falling over to the side or onto her back. With more and more practice we saw this time improve. After three weeks she was able to stay upright and jog for 30 seconds consistently. After four weeks she could do a minute. By the end of the summer, she could jog on her own, easily, for more than 10 minutes at a time. I'm a good swimmer and 10 minutes of treading water is tiring for me, so I was impressed. Not only could she tread for an extended period of time, but she was doing it totally on her own, she had good form, was in control of her body and was having fun.

The improvement in my daughter’s stamina and strength was noticeable out of the pool too. Even though she had lots of therapy, before last summer she didn’t really have any cardiovascular exercise. She couldn’t run and play like other kids and tired easily. This is no longer the case. Her strength and energy improved greatly. This allowed her to walk longer distances in her walker and translated into an improvement in speech volume.

All that aside, the most amazing thing that came out of the water program was independence for my daughter. She is so physically limited that before last summer, she was never without an adult to hold or support her. Now, she has unrestricted movement in the water. She can swim on her own. We can swim together as a family, for fitness or fun. She began to wake up every morning asking to go swimming or saying that she had a wonderful dream that she swam to one place or another with one of her friends. I will never forget the look on her face the first time she jogged from one end of the pool to the other on her own.

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Welcome to Zach's List

Bloom readers asked for a marketplace where they could exchange used disability equipment.

Barbara De Roo, mom to Zach, 2 (left), has launched one in the form of a website for Canadian families.

At Zach's List, you can buy, sell, donate or exchange children's equipment.

"We were looking for a place where we could find equipment for Zach that was cheaper and we couldn't find it," Barbara says.

"Disability equipment is very expensive and it's frustrating when many families are already short-cashed because they have to work less hours to take their kids to programs and therapies. We spoke to people who had good equipment stuck in their basement and no place to get rid of it."

Barbara set the site up with the help of a number of companies who donated services and expertise. "The response has been hugely positive."

We mentioned Zach's List in the December issue of BLOOM, but we got the URL wrong. Check it out at:

http://www.zachslist.ca/!

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My son, the superhero

By Susan Taylor

A good friend of ours, Kirk, is a closet, superhero fanatic and cartoonist. His son and my son Jacob are good friends. When Jacob, 6, needed a new pair of ankle-foot orthotics (AFOs), he had a hard time deciding what design he'd like imprinted on them. His last two pairs had featured Superman and Spiderman, but this time he wanted something different.

“How about Super Jacob?” Kirk suggested. Jacob thought this was an AWESOME idea. “Would Super Jacob wear a cape?” asked Kirk. “Yes, a green one! And he carries a shield!” replied Jacob.

“How about a force field to protect against bad guys?” asked Kirk. “Yes! And boots with rocket-fire jets for fast getaways!” enthused Jacob.

Kirk went to work with his paper and pencil, and soon, Super Jacob (above) came to life.

John Kooy, certified orthotist at Holland Bloorview, was happy to transpose the digital image of Super Jacob provided by Kirk onto Jacob's new AFOs. John noted that this was the first pair of orthotics he's ever done with a custom superhero design. Often children choose or bring in favourite art work, patterns, pictures or characters.

Kirk and Jacob were so pleased with the end result that they've decided to form SUPER POSSIBILITIES, a not-for-profit service that will give kids needing AFOs or other supports the opportunity to proudly wear their inner-superhero personalities!

Kirk says he can create a custom superhero based on a couple of photos of a child and a phone interview. “I am keen to do this and have a few artist friends who are willing to help if demand gets too high.”

Kirk and Jacob charge nothing for their time. They simply hope that they can help build a new league of superheroes, one AFO at a time!

If your child wishes to have their own unique superhero designed for a pair of orthotics, e-mail Kirk at kserjeantson@rogers.com or Susan at susant@rogers.com.

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Neckband turns sounds into computer clicks

Corvin Cioata (above right) is many things: An explorer, a skier, a Scooby Doo fan. Like his mother – a software developer – he’s nuts about computers. But until last year, the nine-year-old couldn’t use one.

Corvin has involuntary movements related to cerebral palsy that make using a mouse impossible. He tried finger and eyebrow switches but couldn’t control them consistently. An off-the-shelf, microphone-based sound switch misfired in noisy environments and exhausted him because it only responded to loud vocalizations.

Then Corvin tried the Hummer – a novel switch developed at Bloorview that detects vocal-chord vibrations when a child makes a sound or hums a tune and turns them into computer functions. “It was the first switch he could easily access,” says his mom Varinia.

Wearing a lightweight neckband, Corvin demonstrated the switch while using a story-making software. The program scanned different storylines related to a princess on an adventure. Corvin clicked his choices by making a sound such as “uh” or “oh” when they appeared on the screen – and showed his pleasure with an awesome smile.

“Certain sounds we make and hums cause the vocal chords to vibrate in a pattern that recurs at regular intervals,” says Tiago Falk, a postdoctoral researcher in biomedical engineering at Bloorview and the primary inventor (in photo above).

A sensor the size of a nickel embedded in the neckband sends signals to a microcontroller that detects the pattern and activates a mouse function – such as turning a page in an online book, clicking an icon on the screen, or moving the mouse left or right.

The Hummer is perfect for children who don’t speak and have physical disabilities that make conventional switches challenging.

A big advantage is that the sensor doesn’t respond to background noises, coughs or other user-generated noises – which can cause false responses in microphone sound switches like the one Corvin initially tried.

Vibrations are produced naturally during voiced speech or hums – no matter how loudly or softly the child vocalizes – so even quiet sounds or silent hums activate the Hummer. In contrast, microphone switches can fatigue users because they require speech of a certain volume.

The current Hummer is a single switch operating one computer function.

A new version is in the works that will allow users to activate a variety of functions based on differences in the pitch and duration of what they say and hum. For example, a quick, low hum might move the cursor right, whereas a slow, high-pitched word would translate into a click.

In future, the system could be used to control voice technology and electronic devices like a TV and lights and to drive a power wheelchair.

“In the short term, it allows Corvin to do school activities like reading and journal writing,” Varinia says. “And in the long-term, it opens the door to a communication device and to accessing environmental controls so he can be more independent.”

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