Tuesday, April 29, 2014

The father of invention

By Louise Kinross

Eric Sherman’s son Cole loves to swim. But he has cochlear implants and needs to wear expensive waterproof processors attached to a headpiece with cords.

The processors were clipped to an arm band, but Cole, who has autism, wasn’t comfortable when the band slipped down or the cords got tangled, and would sometimes try to take it off.

“The processors cost several thousand dollars each and as a parent you’re afraid they’ll get lost or damaged,” Eric says. "So you’re always weighing whether or not to let your child participate, whether or not to let them wear them.”

Looking for a way to better fit the processors to Cole, Eric began experimenting by sewing pockets on swim shirt sleeves. Earlier this year he launched CI Wear in Los Angeles, a company that makes swim compression shirts with specially-designed sleeve pockets that keep cochlear implant processors secure.

Inside each of the pockets is a retaining band that you clip the processor to. A small opening on the back side of the pockets allows the sound cords to be threaded through the inside of the shirt, then through loops in the collar, keeping the cords at the back of the head and minimizing the chance that a child’s hand will snag them, pulling the headpiece off.

The first time Cole wore one of Eric's prototypes “It was as if he never had them on," Eric recalls. 
He didn't notice them.

Eric then hired a person who does costume design and rigging for stunt men to develop a second prototype with an especially durable pocket.

When the family showed the shirt to their audiologist, “her jaw dropped and she said 'You have to make these. I have families that would die for these.'”

Eric partnered with Victory KoreDry, a water sports gear maker, to make additional prototypes and had audiologists share them with families. “Within a week families were calling back and asking if they could buy them,” he says.

In addition to swimming, the shirts are perfect for playing other sports like soccer or skiing, where there’s a concern that the processors will get broken or lost. If the child’s headpiece is knocked off, it’s easy to grab and put back on because the threaded cords prevent it from falling off the body.

In the future, CI Wear plans to market its shirt to people who enjoy running or working out while using an MP3 player, but don't want to carry the device in their hand.

The shirts come in different colours and range from US $45 to $49.

Monday, April 28, 2014

Ontario, MaRS pose citizen-centred housing challenge

By Louise Kinross

Two years ago we had the assessment necessary for getting an adult with an intellectual disability onto the list for community services, including group homes, in Ontario.

Ben, D’Arcy and I spent 3 ½ hours filling out what was a highly cumbersome, overly complicated survey that was supposed to measure how much support Ben needed.

Given we'd taken the morning off school and work it was galling to be told during the assessment that there were no services to be had.

We were asked to pick a lead agency that would be responsible for Ben’s needs, and we chose L’Arche, the homes for people with intellectual disabilities developed by humanist Jean Vanier.

Since then we haven’t heard a peep. Recently we met with a woman who helps families plan for their child’s transition and she encouraged us to reconnect.

This is the update D’Arcy provided after a phone conversation with Developmental Services Ontario:

-There are no longer “lead agency” designations (why were we not informed of this?).

-Ben needs 19- to 24-hour support in a home with no greater than 3:1 resident/support worker ratio, but these types of homes are non-existent. Any available spots would go first to people with complex medical needs.

-The list Ben is on is not a waiting list, but a needs-list. We are low priority because our family has two working parents.

-To have any hope of getting a call-back, it was recommended we raise the resident/worker ratio to 5:1.

Every parent dreams that their child will lead a rich adult life, one in which they choose to do things that matter to them, and are supported in a way that allows them to thrive and be happy.

To have your child’s future reduced to a conversation about worker numbers, with no discussion about the actual group home, its philosophy, the way it works, its strengths and weaknesses, where it’s located, and who else is there, is a slap in the face.

Back in March, I tweeted about the Select Committee on Developmental Services looking at the crisis in housing for adults in Ontario. At that time, the committee said there were 12,000 Ontario adults on a list for group homes with a wait of 20 years. TWENTY years. The report also notes that 2,300 families of adults are waiting for respite in a province with only 225 available respite beds.

It’s common knowledge that the only time people are placed in group homes long-term is when their parents die. Once that happens, who will be there to ensure the fit is a good one? Our experience has indicated that this is a numbers game that has nothing to do with the human being involved and their hopes and dreams.

Today I was thrilled to see this challenge to find solutions to the crisis by the Ontario Ministry of Community and Social Services and MaRS, the medical research and social innovation hub in Toronto.

In defining the problem, the MaRS Challenge Brief says that $1.15 billion is spent on residential support for about 18,000 adults with developmental disabilities in Ontario each year, but 7,300 adults are on a wait list (not sure about the discrepancy from the Developmental Services Committee numbers). The brief says that as of July last year, there were over 800 complaints by families to the ombudsman.

The Community and Social Services Ministry has partnered with MaRS Solutions Lab to develop and test new approaches to transform the system.

The challenge question posed was: “What would homes and communities need to look like for citizens with developmental disabilities to achieve citizenship: to live in the communities they choose, to grow and lead full lives?”

Six areas of research were identified. The paper says next steps are to:

-Convene partnerships across the four to six ministries of the government that impact people with developmental disabilities

-deepen understanding about people with developmental disabilities and citizenship

-Explore pent-up demand and information strategies that better inform future planning

-Explore and co-design citizen-centred alternatives. “Many social problems are often defined from an institutional perspective,” the brief says. “The lab takes a different view. Using tools from design thinking we try to gain a deep understanding of the problem from a citizen or user perspective. Not by just analyzing the numbers, but by also studying the people."

-Transform the system by exploring how to increase capacity to support family- and community-led innovation.

-Clarify and quantify developmental services objectives that are citizen-centred.

A number of our readers are very involved in these issues. Please give us your feedback on the details of the challenge PDF!

Thursday, April 24, 2014

Anne Geddes finds a new focus: 'deceptive strength'

By Louise Kinross

Today is World Meningitis Day and Australian photographer Anne Geddes (right) is launching an e-book of photos of children from around the world who've lost limbs and digits to the bacterial infection. It's called Protecting Our Tomorrows and Benjamin, 15, above, with his parents, is one of her models.

Geddes, known for capturing the innocence of babies, says this project is about showing the beauty and resilience of survivors. (See our earlier BLOOM interview). Meningococcal disease is a deadly bacterial infection that inflames brain and spine tissue and infects the blood.

Geddes says she knew she'd achieved her mission when an eight-year-old boy looked at his photos and said: "For the first time, you made me proud of my amputations."

To tie the photos together, Geddes chose the theme of birds' nests.

"I decided to link all of these images in a really subtle way to what a bird's nest represents," she says. "Hope and protection and family and new beginnings. And, more importantly, deceptive strength: nests hold their elements and survive even though they look so fragile."

The project also aims to raise awareness of the importance of vaccinations and quick medical attention if your child has the symptoms of meningitis: fever, vomiting, headache, a stiff neck, sensitivity to light and drowsiness.

Capturing the children's differences in a way that emphasizes their wholeness was a challenge, Geddes says. "I didn't want to portray these children in a way that was a shock. I wanted the viewers' first reaction to be 'what a gorgeous little girl.' When you're with these kids for more than five minutes you just forget that they don't have legs, or arms, or both."

The children are from Australia, the United Kingdom, Ireland, Spain, Brazil, Germany and Canada. The project is funded by Novartis Vaccines and Diagnostics. The e-book, which includes the story of each child, is exquisite.


Wednesday, April 23, 2014

Two solitudes

By Louise Kinross

In the last couple of days I've seen parents argue for two radically different visions of how to educate children with disabilities.

In this piece in The New York Times' Motherlode blog the mother of a 10-year-old with an intellectual disability who can't speak says that children like her daughter need special, separate schools. "Alongside her peers with disabilities, she's thriving in a rich, complete school community," writes Margaret Storey, who says she's surprised to describe herself as a "segregationist."

Storey writes about how mainstream classes can become "exclusive and stigmatizing" for children with profound disabilities because they don't have the resources to hire highly-trained staff to provide one-on-one support. "Abstractions about inclusion may fail to comprehend my daughter's needs," she writes.

We still need separate schools, Storey says, and they need to be well-funded.

Yesterday in a new Ted Talk called Disabling Segregation, filmmaker Dan Habib, father to a Grade 8 son with cerebral palsy, says that all children with disabilities should be taught in general education classrooms. 

Habib notes that in the U.S., 56 per cent of students with intellectual or developmental disabilities spend their entire day in a self-contained class or separate school.

This flies in the face of 35 years of research, he says, that show that disabled kids who are included in general education classes have better outcomes socially, academically and behaviourally and do better after they graduate. 

Equally important, Habib says, is that studies show improved grades and social benefits for typical kids who learn alongside peers with disabilities.

What do you think?

Read the Motherlode piece and listen to Dan Habib's talk and let us know.

Tuesday, April 22, 2014

Why are disabled teens more likely to be alone?

By Louise Kinross

Life skills staff at Holland Bloorview presented their early findings from a review of 56 studies on friendship for youth with disabilities at a hospital Crosstalk last week. The event brought together staff, youth and a parent speaker.

Sarah Keenan, life skills coach, noted that research has shown that friendship is associated with life satisfaction and good mental health in the general population, while loneliness has negative impacts on our immune system and heart health.

Yet children with disabilities tend to have fewer friends and smaller social networks than their peers. Sarah referenced an American study of 11,000 teens that found that “over 50 per cent of students with autism had no contact with friends outside school and were never invited to spend time with friends.”

Studies find that typical youth are more open to having a friend who has a physical disability than one with an intellectual disability, she said. However, interactions with youth with disabilities in general are often superficial on the part of typical youth.

There is no one definition of friendship and clinicians and researchers want to know more about how youth with disabilities define a good friend, Sarah said.Research shows that friendships of youth with disabilities have some unique characteristics.

For example, while most teens move away from their family in pursuing a growing social life, youth with disabilities continue to need parent support to keep friendships going. Friendships of people with disabilities, particularly those with autism, tend to be less intimate than their peers. And youth with disabilities have less social contexts in which to develop friends because issues with transportation, accessibility and safety make it harder for them to get together outside school.

Most studies about friendships for youth with disabilities focus on the school environment and few look at connections in the community, Sarah said.Holland Bloorview recently ran a 14-week friendship development program called

The program, originally designed for youth with autism, was adapted for teens with physical disability and called Teen Talk. Teens and parents participate in separate 90-minute weekly sessions.

A key lesson learned “is that it’s not enough to focus on teaching skills, we need to give youth opportunities to practise and generalize these skills in school and in the community,” Sarah said. In addition, “parents are important partners in helping their children develop skills and make and maintain friends.”

A parent said the program broke down complex skills for her daughter and gave her the chance to practise them. She noted that friendships for youth today are less face to face and more online.

Parents in the program found school inclusion to be too challenging for many youth, the parent speaker said, and that their children had had greater success making friends in separate programs for kids with similar abilities. “It takes time to get to know our kids and how many typical individuals take the time to get to know the person underneath?” she asked.

The parent said that it’s during the teen and young adult years that youth most need support in creating social networks. “Don’t cut off services at age 18,” she said. “And don’t leave it up to parents,” who already have their hands full addressing a multitude of needs in their child.

“A great way that I made friends was by getting involved in clubs and places in the community and volunteering,” said Farrah Sattaur, a young adult who spoke.

“I think parents should make it a point to connect with their child's teacher because parents know their child best. They should also focus on their child’s abilities, rather than disabilities, and try to figure out their child’s interests. Sometimes it’s hard to figure out a child’s interests. Look for clues, like if your child is always happy around your dog and looking for the dog.

“Teachers should connect with parents, EAs and special-ed teachers to make their programs and activities more accessible. For children and youth who find it a challenge to make friends, just be yourself and believe you can do it.”

Thursday, April 17, 2014

I am warrior mom: Hear me cry and roar

By D. Christine Brown
It was the morning of our son Lucas’s 10th EEG since his acute brain inflammation in September 2011 and subsequent autism diagnosis.

It was cold and raining so we drove to SickKids hospital instead of walking. Lucas’s last EEG was over a year ago and it was still abnormal then on the left side of his brain, only slightly improved from the previous one six months earlier. I vowed that this time, I would accept the results, whatever they were. It is what it is. What will be, will be. I was too scared to get my hopes up high.
After Lucas was sedated and the testing underway, my husband went down to get coffee and breakfast. I watched the computer monitor and burst into tears. The brainwaves looked identical to last year, and with each abnormal spike, the attendant typed in a message marked by a yellow rectangle.

“You aren’t trained in reading EEGs,” my husband reminded me on his return.
The way my husband and I have grieved since our son’s brain injury couldn’t be more different. I have been plagued with sorrow. My husband has shown no reaction. His behaviour hasn’t changed at all. I have been an “extreme caregiver,” to quote author Donna Thomson, and a mother warrior. My husband, on the other hand, seemed to return to leading his normal life.

Back in the hospital in 2011, my mother-in-law assured me that if my husband grieved differently than I did, that was ok. “You don’t have to talk to him about it to find relief,” she said. “You can talk to others. Men don’t like to talk.”
But I never found anyone to talk to. I kept going and did what had to be done to get through each day. We had countless appointments, therapies, school, my own research and my own activities.

I was in a state of adaptation and acceptance. I didn’t realize that I had grief I needed to process.
I was driving my son to his specialized school this past winter and stopped en route for a sandwich. While waiting in line, my son was restless and active, as he usually is, drumming his hands on the sandwich counter and squealing loudly as he enjoyed watching the ceiling fans spin. People looked at us. I implemented my usual distraction techniques to keep his behaviour under control: “Look! Now the lady is making Mama’s sandwich. Oh, look! She’s putting it in the oven!”

When it was my turn to pay, I said “autism” as I pointed down to my son. The middle-aged woman of a Southeast Asian culture gave me a look of sympathy and said with her accent, “I know. I could see”…pause… “I’m sorry.” Fighting back the tears, I responded with a thank you, paid, and led Lucas to the car, where I let the tears drip down my face.
By the next week I had signed myself up for family counselling at Holland Bloorview through the Brain Injury Rehab Unit where we had spent three months of our lives. Family therapist Caron Gan helped me realize that for the first time, post-hospitalization, I had had my feelings validated—by this woman at the sandwich shop. 

I’ve read many accounts of parenting following trauma and it seems to be a common theme that while family and friends are well-meaning and supportive after a tragic event in a child’s life, most want to focus on the positive. They’re unable to just cry along with us. Our society is uncomfortable with tears. I had many upbeat pep talks from people who gave us a ton of encouragement after my son’s injury. And those who focused on the negative focused on “why” this had happened. Why?
People expressed their feelings about what happened to us, but not mine.  This woman in the sandwich shop simply connected with me, a stranger, and validated my reality.

Suddenly it all made sense: why I was completely unable to drop my crying son off at school and leave; why I accompanied him to school until February with only practice “trips to the store” so he could adapt to school without me; why I caved into Lucas’ wants at my own expense, and, ironically, his, unable to set boundaries when he screamed at the door while I showered every morning.
Caron explained that it’s common for parents of survivors of brain injuries and severe illnesses to be over-protective with their recovering children. After all, we are desperate to prevent them from suffering more.

But my hyper-vigilance about Lucas had distracted me from my own feelings of grief about what had happened.
Last year I heard former Canadian Olympian Silken Laumann speak at a BLOOM night about her experience parenting her stepdaughter with autism. I recently had the opportunity to speak with Silken again. She told me that nothing I feel is wrong. I may have intense sadness that this happened to my son or I may be angry and jealous when I see families out and about enjoying activities that we can no longer participate in due to our son’s autism. I may feel guilty that our son’s outcome and prognosis is so positive compared with other families who have suffered similar injuries, or grateful for having our beautiful son still vibrant and with us. These are all simply honest feelings, and they are all okay.

I had just returned home from my first session with Caron, the family therapist, when I opened my email and read this blog by Tali Berman, a developmental play expert: Redefining the meaning of ‘mother warrior!’.

Tali, who works with families of children with autism, suggests that being a warrior mom doesn't mean stuffing your feelings down. “Are parents living their lives with this niggling feeling that it is not okay to stop, fall apart sometimes, cry about the worry/stress/fear and overwhelm?” she writes. “That is what I want to offer to you today. The permission to be with it, to cry, crumble... release.” The timing couldn’t have been more appropriate.

I am a mother warrior! Hear me roar! (And cry!)
As it turns out, our son’s EEG was normal this time. He can be weaned off of his anti-seizure medication at last. Hear an exuberant sigh of relief! We drove home and by now, late morning, the sun had come out. The healing begins.

Caron informed me that my crying during the EEG was anticipatory grieving and I got something else I wanted at the EEG that day. Before the good news about Lucas’s results, I hugged my husband in silence, while crying, and he hugged back. Perhaps my mother-in-law was right.

Wednesday, April 16, 2014

Disabled artists get a new platform for their work

By Megan Jones

Open the closet door in Liz Powers' Boston-area apartment, and you’ll come across a trove of artworks: a painting of a woman by the seaside, her soft purple dress billowing across the canvas; an image of a ship’s mast made of a single piece of paper, each detail painstakingly cut out by hand; an abstract painting of a pond populated by swans with backs that look like turtles’ shells.

All the works are created by artists who are homeless or low-income, or who have disabilities. Liz stores them in her apartment for safe-keeping, until they can be sold on ArtLifting, a website the Harvard graduate launched earlier this year with her brother, Spencer Powers.
The online gallery grew out of City Heart, an annual art show for homeless and low-income artists—some of whom have disabilities. Spencer and Liz started the show in 2011, and in the past three years, it's grown to include 70 artists from eight different homeless shelters.

At last year’s City Heart, the siblings were approached by impressed customers who wished they had more access to the artists’ work. “It was a recurring problem that tons of amazing work was created, but the artists didn’t have a good way to share the work with the community and sell it,” Liz says.
“Lots of people came up to us and said ‘Why just one day a year?’ We didn’t have a good answer, so we decided to start ArtLifting.”  

The works for sale include original paintings, prints and iPhone cases. Artists help to set the price, specifying how much they expect to receive for their pieces. An additional sum is then added to make up the final sale price. That money goes towards maintaining the site, and purchasing supplies to support a number of community art groups ArtLifting partners with. Pieces range in price from $34 for an iPhone case, to several hundred dollars for larger works.
Four months after launching, the site has partnered with a roster of about 15 artists who are in their mid-20s to mid-60s. A few of these artists have physical disabilities: for example, ArtLifting recently signed on four participants who have quadriplegia. As the program expands, Liz and Spencer plan to work with artists with developmental disabilities as well as those creating art in hospitals and disability centres. As a college student, she wrote a thesis looking at the social benefits of art therapy.

Allen Chamberland, 48, has used a wheelchair since he was a child as a result of respiratory issues. He was one of the first artists to sign on with the website. He has been making art in a variety of forms his whole life, and currently uses paper-cutting techniques to create intricate images of landmarks like the Charles River Bridge and the Christian Science Church (he appears in the photo above with ArtLifting co-founder Liz). The pieces are so detailed that larger works can take the artist a whole week to complete, even when he dedicates four or five hours a day to cutting.
Allen says ArtlLifting gives him a sense of accomplishment. “It validates your work,” he says. “It feels really good when someone’s really willing to buy something you’ve spent so much time doing.”  

It also allows opportunities to artists who might not normally get a chance to sell their pieces, he says. Prior to signing with ArtLifting, Allen relied on craft fairs to sell his work and supplement the income he received from disability benefits. 
But weather-related mobility issues made it difficult for him to attend fairs in the winter. Sometimes Allen would go months without selling a piece. Since joining ArtLifting, he says his winter sales have been more successful. All but a couple of his pieces were sold through the site from November to January this year.  

As the program grows, Spencer and Liz are looking to partner with hotels and businesses for larger, bulk sales. In the past few months, the siblings have been successful setting up two corporate contracts with business owners. They started ArtLifting using their own savings, but hope that soon, larger deals like these will allow the site to become self-sustaining.  
The duo are aiming to expand their reach beyond the Boston area, empowering as many artists as possible by helping them support themselves financially, and showing the public what they’re capable of creating.

“For people with disabilities, a lot of times outsiders focus on the negative,” Liz says. “They say things like ‘Oh, that’s too bad you’re in a wheelchair.’ But ArtLifting is a strength-based program. We focus on people’s talents.”

Thursday, April 10, 2014

A parent's search for acceptance

By Louise Kinross

Perhaps it’s the nature of Twitter’s brevity, but I see a disturbing trend in people tweeting simplistic, declarative statements about how parents of children with disabilities ‘should’ feel and think.

An example is this tweet on Autism Awareness Day:

I do not long for a non-Autistic version of my child. I have the child I want. I LOVE the EXACT child I have.

My thinking was, great for you, but what does this have to do with where other parents may be on their own journey to accepting their child’s differences?

Acceptance isn’t a finish line, an endpoint, that you cross. It’s a chaotic process without a clear path, one that despite your best intentions, often sees you circling back. You walk through a forest of shock, denial, grief, guilt and outrage before you get to that small clearing. And just as you think you’ve arrived, you find yourself back in thick brush.
Are parents of disabled children not allowed to have the messy, ambivalent feelings that all parents—I would argue, all people, regardless of whether they have a disability or not—have?
Does it help parents who are struggling with their child’s disability to mandate the kind of feelings they should have? To have them recite simplistic, black and white statements about their relationship with their child—and attempt to snuff out any feelings or thoughts that diverge?
The tweet above is a response to a quote from Andrew Solomon’s Far From The Tree in which an adult with autism recounts how painful it is to recognize that his parents can’t accept a fundamental part of who he is.

“When parents say, ‘I wish my child did not have autism,’ what they’re really saying is that they wish the autistic child they had did not exist, that I had a different, non-autistic child instead. This is what we hear when you mourn over our existence.”
I think the truth of that autistic adult’s experience can exist with the truth of what it’s like to parent a child that one's culture largely views as undesirable, and in many respects expects parents to “fix.”

I’ve found parenting a child with disabilities (not autism), a humbling experience. Having a child that others desperately seek to prevent, as is evidenced in the dizzying race to refine prenatal testing, forces you to reexamine all of the values you grew up with, the comfortable little set of ‘This is the way the world works’ rules you deluded yourself into thinking were real.
One of the platitudes I especially found to ring hollow was: “If you work hard enough, anything is possible.” It still surprises me that I actually believed that growing up, that I was that gullible.

Now I know that it’s not true for any of us, whether we have disability or not. We are all mortal, we all have our limits, and we all fear that in some essential way we don’t belong, that there’s something ‘wrong’ with us, that we’re not good enough. As Jean Vanier says: “We were born in weakness and we will die in weakness.”
Having a child who was different forced me to strip away my own desire to fit in, to not rock the boat, to pretend that I had things “all together.”
It forced me to recognize all of the ways in which I feel inadequate, the ways I wish I was a better person, a better parent, more perfect, less human—but am painfully aware that I am not.

In an op-ed piece in The New York Times, David Brooks talks about how experiences that upend our world view change us.

“First, suffering drags you deeper into yourself. The theologian Paul Tillich wrote that people who endure suffering are taken beneath the routines of life and find they are not who they believed themselves to be. The agony involved in, say, composing a great piece of music or the grief of having lost a loved one smashes through what they thought was the bottom floor of their personality, revealing an area below, and then it smashes through that floor revealing another area.
Then, suffering gives people a more accurate sense of their own limitations, what they can control and cannot control. When people are thrust down into these deeper zones, they are forced to confront the fact they can’t determine what goes on there. Try as they might, they just can’t tell themselves to stop feeling pain, or to stop missing the one who has died or gone. And even when tranquillity begins to come back, or in those moments when grief eases, it is not clear where the relief comes from. The healing process, too, feels as though it’s part of some natural or divine process beyond individual control.”

In a recent talk in Toronto, Andrew Solomon spoke about acceptance as a spiritual practice and quoted from the gnostic Gospel of St. Thomas. “Jesus says, ‘If you bring forth what is within you, then what is within you will save you; if you do not bring forth what is within you, then what is within you will destroy you.’”
I wasn’t at that talk, but those words seem to get at the heart of digging deeply and honestly within ourselves to see what is there—the good and bad, the enlightened stuff and the petty, fearful stuff we wish we were past. To let it all rise to the surface where we can see it clearly and compassionately.

In my mind, the process of raising a child with disability forces us to look at all of the ways in which we, as parents, don’t accept ourselves.
I think when a parent wishes that their child were different, they are often, in fact, wishing that they could make themselves less imperfect, less fragile, less helpless in a world over which they exert such little control. They are silently screaming at the injustice that they are unable to complete a parent's most basic task: Protect your child.

To me, the process of acceptance in parents raising children with disabilities is twofold: it’s parents cultivating love and understanding for their children and it's parents developing love and compassion for themselves. Those two experiences are intertwined and can’t be pulled apart.
This weekend there’s a festival for artists with disabilities called Tangled in Toronto. Its promotional material includes this lovely quote by Eliza Chandler:

"Tangles are messy and imperfect, but they are also complex, intricate, organic, even deliberate."
That, to me, is a fitting description of the rich emotional experience of raising a child with disabilities. We need to stop insisting that it’s not.

Friday, April 4, 2014

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.