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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.  

 

BLOOM media roundup

Happy Monday!

Looking for a read that will make you think? Check out the disability and parenting stories we've collected in the last week. Let us know if we missed a good one! Louise

When the diagnosis is rare, parents may know more than professionals
The New York Times
Great examples of why parents are essential partners with doctors in providing the best care for kids with rare conditions.

Discussing disabled sexuality is a radical act RH Reality Check
Why did the media largely ignore a section on sexuality and disabled youth in a critical update to guidelines on teen sexuality by the American Academy of Pediatrics?

Hidden population: Thousands of youths take on caregiver role at home  ScienceDaily
While most kids play sports or video games after school, more than 1.3 million American youth spent their free time caring for a family member with a disability or mental illness, according to this study. 


For people with disabilities, doctors are not always healers The Washington Post
'I saw blatant examples of unequal and insensitive care to patients with disabilities:' An emergency physician.

Toronto is a 'hostile' place for people with disabilities, academic says U of T News
A University of Toronto professor who studies accessibility says Toronto poses 'unfathomable barriers' to people with disabilities.


Wings for All offering special-needs families an airport dress rehearsal
The Washington Post
For three years the Palkodaty family avoided flying anywhere, convinced that it would be too much for their young son Tushar, who is autistic.

Woman with intellectual disability sexually assaulted on bus with worker nearby
CBC My Region
A 19-year-old Winnipeg woman who needs 24-hour care was sexually assaulted for 10 minutes before her support worker, a couple of rows away, noticed.


'I am different, that is good:' How an actor with Down syndrome is changing perceptions 
The Guardian
Sarah Gordy, who appears in Manchester play Crocodiles, breaks new ground by playing a character without a disability.


Mother wins right to end disabled daughter's life ITV News
A ruling allowing doctors to withdraw g-tube feeds from 12-year-old Nancy Fitzmaurice was the first time in Britain a child, breathing on her own and without terminal illness, was allowed to die.


Nancy Fitzmaurice, assisted suicide and assumptions
Girl With The Cane

Commentary on the Nancy Fitzmaurice ruling.

The work of outsider artist Judith Scott sheds light on living with disabilities
The Huffington Post

Institutionalized for more than 30 years and deaf and non-speaking, Judith Scott found her voice through art, forming intricate sculptures of yarn, fabric and other fibres tightly wrapped around an array of found objects.

'Butterfly child' dreams of the Northern Lights Ottawa Citizen video
Jonathan Pitre suffers from one of the most painful conditions known to medicine, a rare genetic disease that causes the skin to endlessly blister.


Kids with autism bullied three times more Disability Scoop
In the largest look ever at autism and bullying, American research shows that children on the spectrum are significantly more likely than others to be bullied.

Scientists implicate more than 100 genes in causing autism NPR Your Health
Researchers have identified more than 100 genes that are mutated in autism. These are spontaneous mutations, not ones passed down by parents. 

**Don't forget to sign up for a one-day workshop on bullying at Holland Bloorview on  Nov. 29, 10 a.m.-2 p.m. in the Conference Centre. Presenters are SickKids social worker Miriam Granger and lawyers from Stuart Law and Pro Bono Law Ontario. $10 registration fee. Register online.

Research neglects alarming obesity rates in disabled children

By Louise Kinross

Children with disabilities are two to four times more likely to be overweight, and two to four times less likely to be physically active, than their peers, according to Dr. James Rimmer, a professor in the School of Health Professions and research chair in Health Promotion and Rehabilitation Sciences at the University of Alabama.

Despite these alarming numbers, the bulk of U.S. government funding goes to research into weight management for typical children, Dr. Rimmer said.

Dr. Rimmer was speaking today at a consensus-building workshop at Holland Bloorview in Toronto bringing together international experts and families to look at research to address weight management in children with disabilities.

Dr. Rimmer shared a number of American studies that showed dramatically higher rates of obesity in children and teens with physical and intellectual disabilities and lower rates of participation in school gym class and recess and extracurricular activities. “There is a tendency to not take these children out for physical education or recess and to involve them in more sedentary activities,” Dr. Rimmer said. In addition, after-school programs and playgrounds in the community may be inaccessible.

“We have to teach society that there are ways to adapt programs and include kids with physical and cognitive disabilities,” Dr. Rimmer said.

In addition to being socially isolated, youth with disabilities and obesity are more likely to have a host of secondary conditions such as high cholesterol, asthma, pressure ulcers, fatigue, depression, low self-esteem, high blood pressure and liver and gallbladder disease.

“My mission in life has been something called inclusion,” said Dr. Rimmer, noting that he has an adult daughter with autism who has been excluded from preschool and playdates since she was three. “Doctors need to understand that there are many associated consequences of obesity.”

Dr. Rimmer said that some tools that screen for weight issues don't identify problems in kids with certain kinds of disabilities. For example, using body mass index, which is a ratio of height to weight, doesn't work with children with paralysis.

Factors influencing the association between disability and obesity, he said, include: increased dietary intake; less physical activity; decreased fat-free body mass; lower resting metabolic rate, which is the rate at which you expend energy while at rest; and poorer heart function.

Despite the prevalence of obesity in children with disabilities, a disproportionate amount of U.S. government funding goes to research into weight management for children in general, Dr. Rimmer said.

He referenced a 2010 chart from the National Institutes of Health showing 116 federally-funded studies on obesity intervention for the general child population, compared to only eight studies targeted to children with disabilities. Dr. Rimmer noted that research on the general population typically excluded children with chronic medical conditions and genetic syndromes and those who don't walk or take medication. 

Dr. Rimmer said we need to learn from weight management programs that have been effective for the typical child population and adapt them for children with disabilities. “We need a systematic framework for developing guidelines, recommendations and adaptations.”

Dr. Rimmer spoke of a model that included convening an expert panel to assess whether existing guidelines target the disability population and creating focus groups where parents and youth with disabilities evaluate proposed adaptations. “We always find multiple holes in our recommendations after we go through the family focus groups,” he said.

Dr. Rimmer said it's generally not that difficult or costly to adapt programs, and that two common areas that need attention are training instructors on how to work with kids with disability and developing disability-friendly parent education materials.

Overall, adaptations should consider the built environment, such as the need for a ramp or access from a vehicle to a field; appropriate equipment; inclusion of all children in every game, sport or activity in and outside the class; and instruction for staff, for example, in how to communicate with a child with autism.

Dr. Rimmer said obesity is associated with carbohydrates and “our rates of obesity can come down demographically if can get refined carbohydrates, such as high fructose corn syrup, out of our diets.”

Inclusion is a right, he said, not a privilege.