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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.
By Louise Kinross Look at this illustration of an elephant. I couldn't stop. I kept seeing in the detail things that I hadn't initially seen.
This is one of my favourite sketches by Hanzhen Yap, a 16-year-old from Johor Bahru in Malaysia. Hanzhen's intricate drawings of animals, historical buildings and everyday objects like kettles have been shown in 27 art exhibitions. Hanzhen has autism, and his parents taught him to speak and read by pairing words with thumbnail sketches that they drew together. As a young child they drew everything around the house."He draws primarily from photographs, even though he draws very much better if he has seen the object recently where, we believe, the image is still fresh in his mind," says his mother Yvonne.I sent Hanzhen a list of questions about his art, his autism, and any advice he might have for other youth with disabilities. He's going to work on responses with his parents which we'll share in the next week or two.Hanzhen just completed a commission for the Consul-General of Singapore in Johor Bahru.I can't wait to share his thoughts on his drawing process. Stay tuned!
By Louise KinrossBecky Quinlan (top right) can’t say enough about the benefits of Connect2care—a new secure portal that gives parents and kids access to their health records at Holland Bloorview.
“My son Jack is pretty complex and seen in seven different departments,” Becky explains. “Now I can go online to see a list of all of his appointments and what’s pending, and it keeps me more organized.”
She also loves having Jack’s clinical reports at her fingertips. “Before I’d take a ton of notes at every appointment but now I can access that information in real time. I can also print out reports and take them with me to show other specialists.”
Holland Bloorview is one of the first children’s hospitals in North America to offer an online portal to families.
Becky is excited about new features that will be added to Connect2care soon. These include access to lab and microbiology results and two-way messaging with clinicians. “In the past when I had a simple question it might result in a couple of weeks of phone tag to get an answer. I’d phne and talk to the nurse, and the nurse has to talk to the doctor, but some of the specialists aren’t at the hospital everyday. With two-way messaging I’ll be able to type my question in and wait for a direct response.”
Becky is a family-centred care specialist at Holland Bloorview who’s helping to sign families up for the service. “I think it empowers us as patients and families to have our information at our fingertips.”
Connect2care was developed based on feedback from parents and clients and is part of a research study at the Bloorview Research Institute to see how it can be improved over time.
To get registered for Connect2care, visit Holland Bloorview Monday to Friday between 9 a.m. and 3 p.m. You’ll need to bring your child’s OHIP card and two pieces of identification. You can e-mail connect2care@hollandbloorview.ca with questions.
By Louise Kinross
In 2013 Connor Sparrowhawk (with sister Rosie) drowned in a bath alone in a National Health Services assessment and treatment unit in Oxfordshire, England. The 18-year-old had autism, epilepsy and intellectual disability (referred to as learning disability in the UK). The NHS trust that ran the unit initially attributed his death to natural causes—but his parents called for an independent investigation that found his death preventable. Twenty months later, Connor’s mother Sara Ryan, a senior researcher and autism specialist at Oxford University, is still seeking justice for her son.BLOOM: Tell me about Connor.Sara Ryan: He was very quirky and quite eccentric. He had an enormously brilliant sense of humour. He loved transport—buses and coaches. He had a bit of an encyclopedic knowledge of history. He was very good with facts and figures and loved the legal system and the police. But he couldn’t leave the house on his own because he had no road sense and he couldn’t count to ten.BLOOM: When did he go to the unit called Slade House?Sara Ryan: He went to secondary school from 11 till he turned 18 and he was a delight really. Then when he turned 18, almost overnight, he got really anxious and very unlike himself. He was difficult to engage with, had lots of dark thoughts, and was in and out of school because he was aggressive. He began bashing his head against the wall and I was worried he was going to hurt himself or someone else. The night we admitted him he wanted to go home and they had to restrain him on the floor with four people face down and section him. In all his life with us, we’d never laid a finger on him. BLOOM: You had concerns after he went in, specifically about him having seizures there?Sara Ryan: He was part of a happy family and the minute he went into the unit, because he was 18, they treated him as an adult. We had to phone up to get permission from him to visit, which was very odd. They didn’t engage us at all and changed his medication. I visited and could tell he’d had a seizure because he’d bit his tongue and was very disoriented. They disputed that. BLOOM: What happened the day of his death?Sara Ryan: I got a call that he was unconscious and on the way to the hospital in an ambulance. When I got there the consultant said straight away that he was ventilated but there was nothing they could do. They switched off the machine while I was there. Two weeks later the NHS trust published in its board minutes that a ‘service user’ had died of natural causes.BLOOM: At the time of his death, Connor had been in the unit for 107 days but hadn’t been assessed or treated. What were they doing?Sara Ryan: He was there for 107 days and the psychiatrist saw him three times. The psychologist filled in some questionnaires, but they didn’t come to anything. They said they were going to do social stories with him, but they never did that. He was a school boy and they should have been taking him to school. But they gave him choices, so he’d say no and stay in his room and watch DVDs. BLOOM: How did you get an independent investigation into his death?Sara Ryan: Before he went into the unit I’d been blogging about our family's life with Connor. It was about all the amusing things he did. Lots of people subscribed to it and became very fond of him. When I posted one line on the day he died it went viral. And when we found out the trust was saying he died of natural causes—and was going to do an internal investigation that clearly wasn’t going to find out anything—we made a lot of noise online and eventually they capitulated.BLOOM: What did the independent investigation find?Sara Ryan: That it was a preventable death. The staff had the knowledge. They knew he was epileptic and I’d told them he was having seizures in there and was sensitive to medication change. They hadn’t properly assessed his epilepsy and he was left unsupervised in the bath. Twenty months later we’re still waiting for an inquest and the police are still investigating.BLOOM: I understand the unit was later closed?Sara Ryan: Nothing happened after Connor died and we contacted the Care Quality Commission. They were about to do an inspection there. They were so shocked by what they saw that they failed the unit on all 10 quality and safety standards and the trust decided to shut the place down. There was no battery in the defibrillator. It was dirty and there was no therapeutic environment. BLOOM: What accountability do you want from the NHS trust?Sara Ryan: We want the staff to be disciplined, as appropriate, and a corporate manslaughter charge brought against the trust. We want meaningful involvement at the inquest, which is provisionally set for Oct. 5. We also feel that the commissioners who were commissioning the service—which cost about $1,000 a day—have some role to play. The commissioners spend money on services that you wouldn’t let your dog stay at.The mortality rates of people with learning disabilities in the UK are shockingly high.* Because the trust said Connor’s death was ‘natural causes’ we were concerned that learning disabled people might die regularly in hospitals and units and their deaths wouldn’t be properly investigated. Through our campaign we had a meeting with the chief executive officer of NHS England and he agreed to commission a review into deaths since 2011 of people with learning disabilities and mental health issues in the care of the trust. We want the law changed so that families don’t have to pay for legal representation at the inquest and we believe there should be an independent investigation if someone with a learning disability dies in a hospital or other secure setting. BLOOM: In a report you produced, you wrote about the lack of humanity in how your family has been treated.Sara Ryan: I think how they treated Connor was extended to us after he died. They stripped away any sense of him being part of a family and treated him as an object. Once he died they didn’t demonstrate any empathy or compassion or understanding for the pain they caused us and for all kinds of delays and obstructions and deceit really. It’s made what was such a horrific and unimaginably awful situation so much worse. For example, they had the trust’s barrister sit in at a pre-inquest review and try to argue that drowning is a natural cause of death. BLOOM: What will your legal costs be?Sara Ryan: Families in the UK don’t get any legal help for inquests and it will cost us almost $50,000. The NHS trust draws on public funds to arm itself with very good legal representation. We were able to raise the money we need through our social media campaign and selling postcards and other fundraising efforts, which is quite remarkable.BLOOM: In your report you say ‘The ultimate barrier appears to be that learning disabled people are seen as less than human.’Sara Ryan: Generally, in the way our social life is organized, our kids tend to go to special schools and leisure activities aren’t accessible, so people don’t come into contact that much with people with learning disabilities. The chance of having a job is low, so there isn’t a big community presence. When I started blogging about Connor I made him human in a way that he hadn’t been seen outside of his family and school. Even my colleagues started to chat with me about him. After the weekend they’d say ‘it was hilarious that Connor did this or that.’ They began to see that he was a quirky, funny young man. Ultimately we need to bring the human back so people can appreciate these kids as individuals like anyone else, who just have their own ways of doing and saying things. BLOOM: You’d like to see more money allocated to community supports?Sara Ryan: Assessment and treatment units like the one Connor was in have complicated costing arrangements and the money doesn’t tend to follow the person from the unit back to the community. Often the local authority has to find the cost of the support package. You might be able to stay in a place that costs $1,000 a day (indefinitely sometimes, a National Audit Report published last week found the average stay for someone in an assessment and treatment unit is 17 years), but when you come out the local authority hasn’t got the funding because of cuts to welfare costs. In addition, no one seems to know what good care looks like. *A 2013 inquiry into the deaths of 247 adults and children with intellectual disability in England and Wales found women with intellectual disability died 20 years earlier on average than the general population and men with developmental disability died 13 years earlier. Over a third of the deaths could have been prevented with good health care.
Please see a talk Sara Ryan gave at a patient experience conference at the University of Oxford: How to hear voices that are seldom heard
Meet Julia Hanigsberg, the new president and CEO of Holland Bloorview (in photo with daughter Rachel). Julia comes to us from Ryerson University, where she was vice-president of administration and finance. Here she tells us more about her own family's experience with disability and how she's learning about the hospital "from the ground up."
BLOOM: What does your experience as a parent of a child with disability add to your role here?
Julia Hanigsberg: I think it gives me a perspective on the complexity of the lives of our clients and families and a real appreciation of how every child—and every family circumstance—is unique. I think that’s even more the case in childhood disability than in other medical settings. Our client population has so many different vulnerabilities and exceptionalities and I have a real sense of that and of what families go through in trying to achieve the best opportunities for their kids.
BLOOM: Can you tell us a bit about your daughter?
Julia Hanigsberg: Rachel is 18 and we’ve been through a journey of diagnoses with her. She was born prematurely at 29 weeks and has global developmental delay. Then 15 years later there was a new diagnosis of autism. She also has some associated mental health issues like anxiety. I know that the diagnostic world for our kids is often longer and not so straightforward. There are layers, and things emerge over time as our children change. The world in which we operate is not a ‘one-size-fits-all’ world.
Rachel is in high school and she’s a very typical teenager who loves YouTube and her music—very loud music—and her privacy and space and wants to be independent. Her school is a great fit and she’s very enthusiastic about starting co-op because she’s excited about the world of work. She loves to shop, so she thinks working in stores will be lots of fun.
BLOOM: What’s been the greatest challenge parenting Rachel?
Julia Hanigsberg: Two things. One is navigating the system and knowing what to do when. Knowing that you’ve explored all the possibilities, you haven’t left any stones unturned. It’s a two-edged sword because when they’re little, and even now, you don’t always know what the possibilities are. The nice thing about having a teenager is that they have their own ideas about what they want to do.
The other challenge is moving into the adult system and that transition point is a very serious concern. Rachel’s 18 now so we are right in the heart of that—thinking of what the long-term future holds. School will end and that will be an enormous point of transition for her. As long as your kid is in school you know that they’re well taken care of for a good chunk of the day. The path for my daughter after school is less clear.
I’m conscious of the fact that my experience as a parent is just one parent’s experience. For example, our experience is very different from a parent who has a child with an acquired brain injury—where in a moment everything changes for their typically developing child. I gave birth at 29 weeks and we had a long time to move into the world we were in.
I’m also very well aware of the privileges I have. English is my first language and I don’t have a job where taking half a day off for my daughter’s medical appointment isn’t an option.
BLOOM: Can you tell us about your background?
Julia Hanigsberg: I’m a lawyer by background. I think that’s a fantastic educational background for being a problem solver. You come out with a structured way of thinking about problems. Very little of my career has been spent as a traditional lawyer. I spent 10 years in the provincial government, mostly with the Ministry of the Attorney General and in the Cabinet Office doing policy and legislation-focused work. I was chief of staff to a cabinet minister so I have a broad view of the workings of government from a civil service, policy and political perspective.
Then I went to Ryerson and spent five years as the general counsel and secretary of the board and five years as vice-president of administration and finance. It gave me time to understand how big organizations work and how you make difficult decisions within the context of large organizations. One thing I took from my time as a trustee of the board at Holland Bloorview and applied at Ryerson was related to client- and family-centred care. Family leaders here are involved whenever there’s a big procurement decision. At Ryerson, we never would have involved students in that kind of decision. So when Ryerson put out a request for proposal for a new food management company I suggested we have two students on the selection committee. It was fantastic.
BLOOM: Why do you believe that social media is important in your role?
Julia Hanigsberg: Two reasons. One is giving people an opportunity to get to know me as Julia and as the CEO of Holland Bloorview and demystifying the role. People who follow me on social media and talk to me in the halls will see there isn’t a big disconnect. As much as I’m trying to meet every person, it’s hard to do that, so I want to find other ways to expand how I connect with the team that works here and with clients and families. The other is to be part of the ecosystem of sharing of quality Holland Bloorview information that I can disseminate out to the world. My experience with social media is that you frequently make connections online that result in incredibly valuable personal and professional connections. There is a richness there that not everyone appreciates.
BLOOM: Research shows that parents of kids with disabilities are at greater risk of depression and anxiety and physical problems. What strategies have you used in your own life to take care of yourself?
Julia Hanigsberg: It’s a struggle that every parent has, period, and our parents have much more complex families. The other area we read about is resilience—in our children but also in ourselves. Building up capacity for resilience is like building up a muscle. I think that’s quite inspiring and something to be really thoughtful about.
A lot of what we do personally is the normal stuff—eating well and exercise—because you know you’re going to have to absorb and do more. We’re very lucky in that we have a lot of family around us. Respite is so important. We do a lot of that here at Holland Bloorview for our clients and families. In my family, we have nephews and nieces and grandparents who are really involved. So my husband and I can go away for a weekend, pretty infrequently, but we can do that. The support of family also means we can spend time with our other kids. I have 14-year-old twins. So it’s building resilience for the whole family.
BLOOM: How can the hospital best support parents so they feel able to advocate for their child?
Julia Hanigsberg: I’ve been really impressed with our Family Leadership Program. I think the hospital’s investment in the leadership of families is extraordinary and they can take that into the rest of their lives. When I joined the board of trustees the family advisory used to meet in the boardroom but now they meet in the conference centre because they can’t fit in the boardroom. We’ve trained over 100 family leaders. There are also more informal ways like our Parent Talk groups where parents can create networks that help them learn.
BLOOM: What would you like our parents to know about your plans for the hospital?
Julia Hanigsberg: It’s too early to talk about plans for the hospital. Right now I’m learning and listening and focusing on having experiences as the way I learn. People have been incredibly generous in sharing clients and families with me, encouraging me to participate in clinical team meetings and huddles, to help me better understand how the hospital works from the perspective of families and our extraordinary team of staff. My orientation is to learn the place from the ground up, not from sitting in this office.
BLOOM: What do you see as the hospital’s greatest challenge? Greatest strength?
Julia Hanigsberg: I don’t think it would surprise anyone to know we’re challenged financially, and, but for money, there’s more we would do. Space is an emerging challenge. We’re not there yet, but at a certain point we’ll want to do things and be limited by the lack of space. I think the hospital has made smart, economical and efficient use of its resources.
Everyone in the place has huge ambition and that’s an enormous strength. Everywhere I go, people want to do more and better and I think my role is to find the path that allows them to achieve their ambitions for Holland Bloorview. I don’t need to set out the ambitions. Talk to anyone who works here and they’re excited about what they do and have a huge vision for what that could be.For a window into Julia's first weeks at the hospital follow her on her blog or on Twitter @Hanigsberg.
By Louise Kinross
‘Our Curse’ tells the story of a Polish couple whose son Leo is born with a rare syndrome that prevents him from breathing while asleep. Without the support of a ventilator, he will die. The film, by Leo’s dad Tomasz Śliwiński, is nominated for a 2015 Academy Award for Documentary Short. You can watch it in its entirety on The New York Times.
Leo’s syndrome is known as Ondine’s Curse—or Congenital Central Hypoventilation Syndrome (CCHS). Leo’s dad writes that “He evolved from a 'curse' (a term we took from the disorder’s name), an alien creature with lots of medical noisy equipment, into our truly beloved son, without whom we could no longer function.” The movie is a beautifully honest look at how parents try to make sense of a life-threatening illness in their newborn. BLOOM will run an interview with Leo’s mom Magda in the print magazine coming out at the end of this month. Here’s a sneak peek.
BLOOM: Did making the film help in your healing process?
Magda Hueckel: Yes, definitely. First of all, it was very important while we were shooting. It was a really dark period for us, and sometimes we had no strength at all. Leo was still in the hospital, and after coming back home, all we could do was sit and stare at the wall. Nothing seemed important or worth any effort. But, once we decided to make the movie, we had to mobilize ourselves, take a camera and start shooting. It made us active. We felt that we were doing something creative.
And then—watching the movie helped us accept the trauma that we went through, to cry it out, to finally put it in perspective, and start a new life. It was the best therapy ever.
BLOOM: Did health workers help you feel that you could cope with Leo's medical needs?
Magda Hueckel: Unfortunately, the medical care was not perfect. Of course we have met many great nurses and doctors, who have been really involved, but in the beginning we felt very alone. All the knowledge we have, we had to seek from other families who deal with CCHS or from doctors that we reached out to.
BLOOM: What advice would you give parents of infants who have life-threatening illnesses or complex medical needs?
Magda Hueckel: Never give up. Check out everything. Someone tells you your child won’t walk—keep trying; your child won’t eat—give him a chance. It is worth your effort. And never lose hope—medicine is developing and miracles happen. And try to enjoy your life as it is. Even if you cannot do many things and you have a lot of restrictions—you can choose other activities. There are millions of possibilities. You can be happy, you can enjoy your life, you can push yourself to grow.
BLOOM: How is Leo's health now and what does he enjoy?
Magda Hueckel: He is four years old and he is a great guy. He loves travelling. He is starting to read and speak. He is really a happy boy. All his adventures are described on our blog—an English version is available at LeoBlog.
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By Louise Kinross
This is Katie Hebert with her doll with a stomach feeding tube and brother Nathan. "We heated up a skewer and used it to melt a hole in the doll's stomach and then just placed the tube as usual," says mom Kyla. "The kids thought the 'operation' was so cool."
Katie has suspected mitochondrial disease and her family in Texas has adapted her dolls to be like her. I received Katie's photos, and many from other families, after our story about Melissa Shang and her petition to have American Girl release a doll with a disability. We'll share more pictures in the BLOOM print magazine later this month. And...I am interviewing Melissa and her older sister Eva tomorrow about their campaign to see kids with disabilities represented in dolls and books and media.
Below is a picture of Katie with a monkey with a g-tube made for her by Tubie Friends, a non-profit that adapts toys free of charge so that they have medical equipment or features like their owners. "They do all kinds of modifications, feeding tubes and traches and ports and even heart-surgery scars," Kyla says.
And below that is Katie with an American Girl doll who has a wheelchair, glasses and a sock-monkey hat like her.
By Louise Kinross
Check out this video of Rick Mercer spending a day at Variety Village, the fitness and sports club in Scarborough, Ont. for people with and without disabilities.
Variety Village’s physical design, accessible equipment and welcoming culture make it easy for kids and adults of all abilities to enjoy exercising.
Now the club is offering families who receive services at Holland Bloorview a great deal: a free four-month membership to children aged four to 12 years and two free programs—or a subsidized annual membership to families of children with disabilities.
E-mail Lindsay Mulock at lmulock@varietyvillage.on.ca to learn more. The offer ends Feb. 28!
By Louise Kinross
In January I wrote about Melissa Shang, a girl who at age 10 got 150,000 people to sign a petition asking American Girl to release a doll with a disability. Melissa has a form of muscular dystrophy. The company hasn't. Then I heard from the Pots family in St. Catharines, outside Toronto. Pictured above are Emily, Sophia, Rachel and Janneke. Rachel and Janneke both use wheelchairs now and have global developmental delay with no diagnosis.Their mom Sara sent me a photo (below) of an American Girl doll that Emily and Sophie had adapted to reflect their family's experience. They purchased the wheelchair from American Girl. But "the hand splint, g-tube, tinted glasses (for vision clarity) and ankle-foot orthoses were modified by 'Pot Home Health Supplies,'" Sara says, aka Emily and Sophia. "My kids get more satisfaction out of making the pieces.
"From the very beginning Emily and Sophia insisted we save money for Rachel and Janneke to have a doll in a wheelchair," Sara says. "As they began to visit the American Girl stores and website, they were frustrated to see there were little to no props for girls with disability. What I love about that frustration is that it comes from their own hearts. My hope is that they will continue to see places and things that need representation of all, not just in the doll world, but beyond."
Do your kids adapt their dolls in this way? Please send your pics to lkinross@hollandbloorview.ca and we'll share them.
Photo by Elma Regnerus
Looking for an interesting read? Check out the disability and parenting stories we've collected recently. But first, I'd like to introduce you to Julia Hanigsberg, the new president and CEO of Holland Bloorview (in photo with Jillian Peters). You can get a unique window into Julia's first few weeks at the hospital on her blog or follow her on Twitter @Hanigsberg. Julia comes to us from Ryerson University, where she was vice-president of administration and finance. She's the parent of a child with a disability. You'll hear more about Julia in an upcoming piece in BLOOM. Welcome Julia! LouiseHomeschooling, and teaching, a child with Down syndrome The New York Times Motherlode blogBLOOM contributor Kari Wagner-Peck debuts in The New York Times with a piece on what happens when she homeschools her son with Down syndrome. Kari always writes with humour and great insight. Trapped in a virtual coma but aware, Martin Pistorius breaks free, CBC The CurrentMartin Pistorius was a healthy South African 12-year-old until meningitis took his ability to move and speak. Doctors told his parents he was 'a vegetable.' Years later he regained the ability to communicate. This morning he did this interview with his voice device.
Airlines break too many wheelchairs Al Jeezera AmericaExcellent piece on how common it is for airlines to break wheelchairs and the impact this has on frequent flyers.How to measure a medical treatment's potential for harm The New York TimesFewer people benefit from medical therapies than we think. The Number Needed to Treat (NNT) tells you the number of people who would need to receive a therapy in order for one person to benefit. The Number Needed to Harm (NNH)is the flip side. Interesting.
Simple solutions make the difference Scope CharityHow a mom who is three foot six and has brittle bone disease is raising a son she can't pick up with creative adaptations. For example, plywood steps covered in soft foam and fabric allow her to climb from her wheelchair onto the sofa and then from the sofa independently move onto the floor to play with her son. Parents of disabled children must change their loved ones on public toilet floors Irish MirrorParents in a number of countries, including Ireland, talk about how inaccessible bathrooms limit their families. They're calling for designated bathrooms with a ceiling track hoist and a height-adjustable adult changing table.For special-care residents, New York state policy means leaving home The New York TimesHeartbreaking piece about how challenging the move from an institution to the community will be for a 50-year-old man with severe autism who's lived in an institution for most of his life and finds comfort in its routine.Making a place for disabled young adults to live, learn The Boston GlobeA mother creates a residence and day program for adults with autism, like her son, and other developmental disabilities. But the price tag is steep: US $125,000 per year.Legoland bans disabled men from park because of protection policy The IndependentTwo British adults with developmental disabilities whose families bought them passes to visit Legoland are barred from attending with their caregivers due to 'safety' of other children. The policy is small-minded. A new face for Violet The New York Times video
A surgeon uses a plastic 3D printing model of a child's skull to practise cuts prior to conducting a complicated facial surgery.Parenting expert writes about raising four struggling kids The Toronto StarCan't wait to see Ann Douglas' new book Parenting Through The Storm about raising four children: one with depression, two with attention deficit and one with Asperger's.What Facebook means to special-needs families The Huffington Post
For parents who have children with rare diseases or disorders, special equipment, body differences or something that makes them extra unique, Facebook is the most precious invention ever.
An ER doctor sees the health-care system through a patient's eyes Chatelaine
Dr. Brian Goldman writes an eloquent piece about being on the other side of the fence during a discussion about placing a DNR on a family member, his father.
By Marcy WhiteI hate Pelizaeus-Merzbacher disease (PMD).
On March 21, 2003, I was told that PMD was the cause of my son Jacob’s many medical problems. I’ve hated the disease ever since. When I learned that it is degenerative and would continue to burrow into my son’s brain and nervous system like a voracious mole, until it ate away his abilities to think, to breathe and to live, I detested PMD. And when I witnessed my son on a ventilator two months ago because the disease had so weakened his immune system that a cold required him to have mechanical assistance to stay alive, my hate relationship was in full swing.
These days, I can’t think of PMD without my heart twisting with loathing. This is hate to the extreme. When Jake was hospitalized for the first three months of his life, I repeatedly said it wasn’t fair. Why was he, an innocent newborn with a whole life of possibilities ahead of him, suffering such excruciating pain and struggling so hard to breathe? It didn’t take long for me to realize that the saying “life isn’t fair”—often used half-heartedly by my parents when I complained as a teen about not being allowed to go to a party with friends—is 100 per cent accurate. Life isn’t fair and my son’s disease is proof of it.
Life’s cruelty and my abhorrence of PMD crashed into our house when I had to explain to my twin daughters that Jake’s PMD was worsening.
The fact that Jacob has PMD is wrong. The rapid change in his health is completely undeserved. And the fact that Jamie and Sierra have to experience all this, alongside their brother, is unreasonable in its heartlessness. At ten years old, Jamie and Sierra are forced to witness this injustice every day.
When Sierra and Jamie were six years old, they gave their friends an impromptu genetics lesson by explaining the inheritance pattern of the disease that affects their big brother. They’ve always known that Jacob’s care is difficult and there are nurses in his room every night to ensure his medical safety. But until recently, they didn’t realize that PMD is a fatal disease and that despite our efforts at researching a cure, their brother might not live long enough to benefit from medical breakthroughs.
I’ve learned that people adapt to changing conditions. I remember saying that I wouldn’t be able to stick a tube down my son’s throat and suction out the mucous that was blocking his airway and causing him to turn blue. Now, I do this every day and my hands remain surprisingly steady during the process. When Jamie used to hear the rumble of the suction machine, she would stop what she was doing and put her hands over her ears to block out the awful sound. But, last week, as I was threading the tube down Jake’s airway, Jamie held her brother’s hand and talked him through the entire procedure, even wiping away the tears that pooled at the edges of his eyes. There was so much injustice in that scene, but also a ton of love.
My daughters experience things on a daily basis that youngsters should not have to bear, and that is deplorably unfair. They are aware of the frailty of their brother’s lungs, they know how to read his oxygen monitors and understand what numbers indicate a dangerously high heart rate. They dissolve into tears when he needs to go to the emergency room because, in their experience, that is the start of a long hospitalization and a complete disruption of their lives.
Caring for Jacob is extremely challenging and scary at times. He can go from breathing quietly to sounding like he is drowning in his saliva in seconds. The level of oxygen in his blood can plummet from a safe 98 per cent to a dangerously low 77 per cent in the blink of an eye. The doctors and nurse practitioners have taught me how to care for him and when to intervene. So for the most part, I know how to “manage” my son’s precarious medical needs. I don’t like it, but I am adjusting to the new level of care that Jacob requires.
Late at night, when the house is quiet, save for the humming of the oxygen concentrator in Jake’s room, what keeps me awake is thinking about how PMD is affecting my twin daughters.
Prior to their births, I read a lot about siblings of kids with special needs. Everything I came across consistently stated that kids raised in homes with atypical children grew into empathic, sensitive and caring adults. I do believe that, and have already witnessed several examples of my daughters’ concern for the feelings of their friends. They display a level of compassion beyond their years.
Sierra and Jamie are forced to cope with things many adults are unable to fathom. My heart shatters when they come home from school crying because their friends don’t understand what it’s like to live with a disabled brother whose health is so fragile. I have to explain that most of their friends aren’t emotionally equipped to support them as they express their fears. And that, too, isn’t fair.
How do I hold it together when they ask questions like “Why doesn’t home feel like home anymore?” or “Why does my life have to be harder than everyone else’s at school?” or “Will a cure for PMD be discovered in time for Jake?”
These are questions about which little kids shouldn’t have to wonder, and issues from which I desperately wish I could shield my daughters. But I can’t. So we talk. In the car, on our way to an activity, we talk about why we don’t travel like their friends’ families. And at dinner, we talk about whether the auditorium where the girls are performing in a play is wheelchair accessible so Jacob can come and watch. And late at night, in the darkness of their rooms, we chat about how unfair it is that their brother has PMD, that he can’t tell us exactly what he’s thinking or feeling and that they are scared to be alone with him in case he stops breathing.
We love Jacob with every fibre of our beings. But we hate PMD.This piece originally appeared in Her Magazine. You can follow Marcy White on her blog Cure PMD or read her book The Boy Who Can.
By Jennifer Philp Zakic
I have a confession: whenever I enter a new place, I scan the room for signs of infection. I look for runny noses, speculate about whether the cough I hear is a “real” cough, and ask people “Do you currently have, or are you getting over, a respiratory virus?”
When I walk into a grocery store, I cringe at the thought of using a cart. I have learned to take Lysol wipes with me everywhere, and this eases my concerns, albeit ever so slightly. I always have a bottle of hand sanitizer near me, and I put it on about every seven minutes when I’m outside the home. I feel explosions of relief in the pit of my throat whenever a friend cancels on me because they suspect a cold is coming on. I rarely go to parties anymore. If I do, I’m the weird girl in the corner who only talks to people she’s known for at least 10 years.
By nature, I’m not a paranoid person. I’m not even a shy person. I have no definitive phobias toward germs. In fact, I’m usually the one who pulls the mystery food out of the fridge at work.
I am simply trying to protect my son, Branko (above right, with sister Nina). His last respiratory infection occurred in August, and it was, not to sound technical, a real doozy. His lungs were so full of junk that he was intubated for a week. It would be really wonderful to never have that happen again.
Our son, Branko, has a complicated medical history. Depending on your proximity to the world of special-needs parenting, his condition would either scare the pants off you, or not shock you in the slightest. He has skeletal dysplasia, caused by a chromosome 12 microdeletion, which affects pretty much every bone in his body. However, the only life-threatening aspect of this condition relates to how his ribs have grown. Funny. They have grown very funny. And small.
To sum it up in the simplest of terms: small ribs = small lungs. The actual cells and alveoli function beautifully but those pesky, funny ribs are restricting the movement of the lungs. As a result, he has spent an extraordinary amount of time in an ICU bed. He has had two unplanned intubations. Oh yeah, almost forgot, his heart stopped for five minutes one time because he had a Rhinovirus, aka The Common Cold.
For strangers or people I haven’t seen in a while, attempting to condense the summary I’ve just given is hard. It’s hard to accurately convey the severity of his situation. I either provide way too much detail—and watch as my listener’s eyes glaze over—or I don’t give enough, and I look like an overbearing and paranoid parent. I would hate to think that people assume I’m avoiding germs just to escape the inconvenience of a runny nose and a lost night of sleep.
Since his last respiratory infection in August, we've kept Branko in quarantine. He just had his first playdate in five months. He rarely sees other children now, and when he does, it will be a one-on-one playdate. It was a difficult decision to make, because he has always had some degree of social anxiety. I feel incredibly guilty for adding fuel to that fire.
At first, we tried to keep going on with our lives as if everything was normal, but this attitude led to some tricky situations. At the park, a friend’s sick child excitedly ran up to Branko’s stroller to say hello. At a birthday party, a friend-of-a-friend casually mentioned that her daughter, who was sitting right beside Branko, had been sick for three weeks.
We quickly realized that most parents have no problem sending their children out into the world with a cold. In an effort to kill hundreds of birds with one stone, we used social media to tell our story. It only took one Facebook post to make people understand that yes, we might run away from you if we see you at the store, and no, it wasn’t anything you did. And it worked. I realized that the people in our lives—friends, acquaintances, friends from former lives—were all really wonderful people. Now they understood. They hadn’t been through it themselves, but they got it.
There are a lot of things we don’t do anymore. We don’t go to birthday parties. We don’t go to the museum. My husband and I avoid crowded places, especially with people who aren’t aware of our situation. And did I mention the hand sanitizer? I own plenty of hand sanitizer.
But Branko still does so much. We have turned his weekly hospital appointments into an adventure. It’s not just a car any more, it’s a safari ride blasting all of his favourite songs. As an exclusive treat, we let him use the iPad in the waiting room, and I’ll admit, those days usually end with a trip to the toy store.
And sometimes, one of us will take him shopping so that the other parent can simply have some peace and quiet. We take him to larger, open, less crowded stores with the idea that fewer people and more space might reduce our proximity to viruses. We keep him busy at home. We reach out to other people when things get tough. We understand the importance of having time to ourselves, without our children. We complain. Some days are darker than others. There are days when I have no idea how long the TV has been on, and other days where I don’t turn it on at all.
Some days, I am swimming in fear. I try not to get angry when we visit the hospital for Branko’s monthly RSV vaccination. It’s in a very unfortunate location, right next to the children’s walk-in clinic. I try not to be angry with the parent who lets her sick toddler run up to our stroller—the blue one with the sickly looking boy attached to a portable oxygen machine. I try to keep my cool, but it’s really hard.
This past weekend, Branko’s dad took him to his first playdate since August, with one of our oldest and dearest friends. For the first 30 minutes, Branko had a meltdown. He clutched onto his dad’s neck and begged to go home. His little friend was determined to snap him out of it, hiding and reappearing from underneath the furniture. After a few minutes, Branko was laughing. My husband sent me a picture of the two boys playing together on the floor. I exhaled deeply when I saw the picture: this was Branko, being just fine, in a non-quarantined world. I saw a glimpse at our possible future.
We have a difficult decision to make, and that’s when to lift our quarantine, since Branko is eligible to attend Kindergarten in the fall. I often wish that parents of medically fragile kids could look into a crystal ball, or at least have the superpower to see viruses with the naked eye. Until this is possible, I guess I will continue to be the weird girl at the party, scanning the room for runny noses and speaking to a scant handful of people. Please don’t be offended.
Please follow Jennifer Philp Zakic on her blog Branko Has Funny Bones.
By Louise KinrossTommy (in orange shirt) and Martin Tobon (foreground) are nine-year-old twins.
Martin likes building Legos. Tommy prefers to swim. But he doesn’t like wearing goggles because “fish don’t wear goggles.”
The boys are just as specific about what they like and don’t like about Holland Bloorview, Canada’s largest children’s rehabilitation hospital.
“I don’t like the way they put the basketball hoop in the gym,” Tommy says. He speaks softly and with effort due to his cerebral palsy. “The hoop in the gym is too high.”
“That’s right,” Martin says. “He wants different sizes for different kids who can’t shoot that high.”
Tommy also found the water table in the Ronald McDonald Playroom didn’t work for him. Because he uses a wheelchair, he couldn’t get up close enough to play.
The boys shared their ideas as part of the hospital’s children’s advisory council and say they’re pleased with the changes they’ve seen.
For example, there’s a new water table in the playroom that’s accessible so Tommy can wheel under it and play at his height. “We also wanted a place to hear music by ourselves or play games or on the iPad” Martin says, and voila—there’s now a dedicated space for these activities called the teen corner.
The group of 20 child advisors, which includes patients and their siblings, is led by Daniel Scott, Holland Bloorview’s outpatient playroom coordinator.
“It’s so important for kids to know their voice matters,” Daniel says. “We want to give them opportunities to give feedback in ways that are meaningful to them and to the hospital. Children with disabilities will be systematically marginalized for the rest of their lives—so if engaging them in a council helps them become their own advocate that’s an incredible life skill down the road.”
When Daniel launched the children’s advisory three years ago he couldn’t find one targeted to young children. Most hospitals, like Holland Bloorview, had a youth advisory, but participants had to be 13 or older. “The age range we see in a pediatric hospital is broad and to leave children under the age of 13 out of the change process is such a missed opportunity,” he says. “These are children who have been in the system for a while, are here on a regular basis and know it well.”
Holland Bloorview’s children’s advisory council is open to kids aged three to 13, but some children choose to stay on longer.
The council meets on a project basis to consult with hospital and external programs looking for input from this age group.
Its first event was a brainstorm—over pizza—on how to improve the Ronald McDonald playroom, a supervised “play zone” for clients and their brothers and sisters. Some kids filled out a survey or shared ideas verbally. Others were observed playing to see what toys and activities they gravitated towards. Kids could also browse a catalogue of adapted toys and stick a post-it note on items they’d like to see in the playroom. "The toy catalogue captured data from kids who weren't as verbal or who are shy,” Daniel says. “We ended up making a lot of changes, from creating a teen corner, to bringing in materials that made the room more accessible—like a large ramp and stairs to our ball pit so kids get could in and out independently—and getting a wheelchair accessible art easel and sensory table. We also lowered the level of shelving and made it open and at eye level for kids.”
Another event involved having kids try the food served on our inpatient units. This seemed a great idea since kids can be picky eaters. “The food tasted great, but when it was first put in front of them, it wasn't presented in a kid-friendly way,” Daniel says. “For example, one of the children said that the meatballs looked like brains.”
Another client who's lived for many years on our complex-continuing-care unit suggested the food was too bland. As a result, seasonings are now available in the kitchens. "These kids have a lot of their lives dictated to them, so providing as much choice as possible is a great relief," Daniel said. As a way to build the relationship between food services staff and inpatient families, a new Kids In The Kitchen program invites kids to come make their own pizzas, cupcakes or cookies.
They’ve also been consulted on the accessibility of video games. Scientists in the Bloorview Research Institute want to know if therapeutic games they're developing are easy to use and fun, so Martin and Tommy and friends came out for a night of video-game playing (in the photo they're with scientist Elaine Biddiss, right, and their mom Andrea, left).
“Daniel is really good at making the sessions fun—with snacks and activities—and getting their ideas,” says Andrea Davila, Martin and Tommy's mom.
Last year the group was invited to a patient experience conference to describe its role to about 350 people. Tommy and Martin sat on stage with other advisory members and answered questions from the audience.
“This is teaching them skills they'd never learn at school at this age, like being able to talk in front of so many people,” Andrea says. “They're learning to be advocates for themselves, but also to see a bigger picture that benefits other children. I notice they have more confidence when they speak to regular people on the street. And I know they raise their voice a little bit more—especially Tommy because sometimes people can't hear him. That’s something we practise.”
To get involved in the children’s advisory, call Daniel at 416-425-6220, ext. 3438.
By Louise Kinross
Very high stress levels in 17 per cent of Canadians who care for a child or adult with a health condition or disability was flagged as a significant concern in a report on mental health indicators by the Mental Health Commission of Canada (see page 8) yesterday.There isn't anything new or surprising about this. In fact, I'm surprised that the number is so low.There's more than a decade of research showing parents of kids with disabilities have higher rates of stress and depression than parents raising typical kids, as well as poorer physical health (See the bottom of page 4 of this 2013 Australian report for a review on the mental health studies). One study found the level of chronic stress experienced by mothers of youth and adults with autism mirrors that seen in combat soldiers.
The worry is felt by siblings, too. A 2014 study in Pediatrics found that siblings of children with disabilities were almost three times more likely to have parent-reported emotional and behavioural problems. "Growing up with a child with a disability is a risk factor for mental-health issues," lead investigator Dr. Anthony Goudie told BLOOM.
When a group of Australian researchers were trying to come up with a practical resource to support mental wellbeing in parents of kids with disabilities, they could only find one document online targeted to this population.
They've since released Wellbeing for Parents and Carers, a resource for parents caring for children and adults with disabilities. It was put together based on interviews with parents.
They identify these ways to help promote mental wellbeing:
Practise self-care.Ask yourself 'How am I doing?'Ask for help.Try not to be too hard on yourself.Recognize your achievements.Plan time for yourself.Take a break from caring.Build supportive relationships.Talk about how you feel.
I know some of these strategies will sound impossible to our readers, especially "practise self-care, plan time for yourself and take a break from caring."
"Ask for help" is also a really tough one, because as parents of kids with disabilities we don't want to create the perception that what we do is hard (lest people interpret that to mean we love our kids any less, or that our kids somehow "are less").
I'm tired of reading study after study, year after year, about how parents like us are at risk. We have ENOUGH evidence. In addition to the scientific studies, there are regular news stories about parents who reach breaking point.
The report on Canadian mental-health indicators notes that "caregivers are an invaluable asset to formal health care and social service systems in supporting individuals with physical and/or mental health conditions."
They got that right.
So why isn't there more action on giving parents the respite and supports they need to better take care of themselves? So that they don't become mentally or physically ill?
I know a number of families whose children require the level of care received in an ICU at home. Yet they receive a weekly allotment of nursing care that gives them about six hours a night. Do most of us cope well on six hours of sleep a night?
When I saw the news story about high stress in Canadian caregivers being flagged as a mental-health concern I felt a rush of excitement. But then I looked back over the years and years of studies related to parenting kids with disabilities. I remember reporting on one of them by our then chief of medical staff back in 2005. And I don't expect any change.
