Thursday, August 17, 2017

It's the little things, like shoes

By Louise Kinross

A year ago I bought my son two pairs of the same New Balance training shoe—one in white and one in black. A colleague had recommended it as one that works well for people who need a lift added to one shoe, because of a difference in the length of their legs.

There’s nothing wrong with this particular shoe, per se. But it’s boring.

Before my son went off to camp this summer, I told myself I would find a new pair of shoes for him, a pair that not only fit his unique feet comfortably, but which were also high on the cool factor.

I knew this would be a challenge. I did not imagine that two months later I would be shoeless, and sitting in a work meeting looking dejected and asking: “What was that journey called that knights were sent on, you know, like in that poem Sir Gawain and the Green Knight?”

“Quest?” my colleague offered.

“Yes! Quest! That’s it!”

Let me explain. My son’s feet do not fit standard sizes. “Would it be okay if I wrote about how hard it is to find a pair of shoes that fit you?” I asked him this morning. He nodded in the affirmative.

My son has an unusually high instep, which means that most shoes are not roomy enough to do up over his instep.

In addition, he wears in-the-shoe orthotics, so his shoes need extra width.

The sole must be wide and relatively flat, so that a lift can be put on the left one (forget all those shoes with big bumpy things on the bottom).

And he needs lots of ankle support—he can’t wear those weightless Nike Free running shoes that one of my daughters has in about six different colours.

The ideal pair is laceless and easy to put on. And it must come in a boys size 2.

I began by visiting a children’s shoe store in Toronto—nowhere near my home—where I purchased a pair of Asics running shoes that I thought might work. I didn’t bring my son because it isn’t easy for him to walk, and I wanted this search to be painless for him.

I got them home. I took out the insole and managed to shove one of the orthotics in—just barely.

“Can you put this one in?” I asked my husband.

He began to manhandle the shoe.

“But don’t WRECK the shoe, I may have to bring it back!”

He got the orthotic in. But it was pushing out against the sides of the shoe. Would this cause the shoes to tear?

I asked my son to try them on. It sounds easy, but it wasn’t. We both had to work to get his foot in there—me holding the back of the shoe down while he tried to step in, at the same time as standing up, to add pressure. It was obvious there wasn’t enough room for his instep.

I wasn’t cast down. I drove right back over to the other side of town, in rush-hour traffic, and asked for the larger size. When I brought that pair home, they didn’t fit either.

That’s when I decided to do this shopping thing from the comfort of my own home. I went straight to Nike.com. High-tops, I thought, would probably be a safer bet, for the added support.

I found these Nike Air Force 1. I sent the link to the person who makes our lifts and he said one could be put on them.

I ordered.

They arrived. They looked great. But when my son tried to put them on it was like trying to force a square peg into a round hole. We did finally get the shoe on and done up. But his instep bulged out of the top so the velcro strap hardly reached over to the other side to close them. His feet were falling out of the shoes.

I put the Nikes back in their box and dumped them in the back of my car, where I still had the larger pair of Asics rattling around in a box.

Nikes is a dream to order from, by the way, because they cover the cost of returning items (how do they do that?). I put the address label with the bar code they provided on top of the original label and handed the box over at UPS. A few days later the money was credited to my account.

While googling “best children’s shoes for orthotics” I came across recommendations for Plae shoes, based in San Francisco. On their Facebook page they had photos of kids wearing the shoes with orthotics. Customers said they were wider than usual, didn’t have an insole that had to be pulled out before placing orthotics, and had velcro tabs.

I thought this pair might work.

I put them in my cart and started to type in my address. I scrolled up and down under “state/province” but they only listed states. What? They don’t ship to Canada? The nerve! How provincial could this company be?

I “chatted” online with a service rep who told me that Nordstrom in Canada carries some of their products.

I called Nordstrom downtown and described the shoe. The salesperson put me on hold. Ten minutes later he picked up the phone again. “We don’t have that style,” he said, “but we do have a Plae shoe in…” and then he proceeded to describe this other shoe—blah blah blah—the elaborate details of which I can’t recall. “Hold them,” I said, mentally changing my plans for that night.

I messaged my brother, who lives in Boston, to ask him if I could have the pair I liked on the website shipped to his house. “Sure,” he wrote back. “And I’ll even pay to ship them to you.”

Then I drove to the Eaton’s Centre to see what style of Plae shoe they had in stock.

Major disappointment. Before I went to the cash to ask for the shoe I’d put on hold, I perused those on display. There was another Plae one. They were sneakers, not the high-tops I was looking for. I picked them up but they just kind of flopped in my hand. No marks for support.

An overly helpful salesperson swarmed in on me.

“Are you looking for something specific?”

“I called and had a pair of Plae shoes put aside for me. But I’d also like to look at the other shoes as well.”

“Of course,” she said, “I’ll go grab the Plae ones you called about.”

I found a pair of Adidas high tops that I thought might do the trick. I picked them up and sat looking at them, opening them and closing them and trying to eyeball whether they were likely to fit my son’s feet. The more I stared at them, the more uncertain I grew.

The salesperson was now by my side, with the pair of Plae shoes I’d put on hold. “I definitely don’t want those,” I said, “but I’m not sure about these,” I said, gesturing to the Adidas.

“They’re great shoes,” she said. “We’ve had no problems with them.”

“I’m just not sure if they’ll fit my son’s instep.”

“How old is your son?” she asked.

Oh brother, I thought. If I tell this lady how old my son is, she isn’t going to understand why his feet are so small. And then I’m going to have to tell her a long story.

Instead, I opted for: “He wears a size 2.”

“Oh, well that’s easy,” she said. “Why not just buy him a size 3? Then you know they’ll fit and he’ll wear them for a while.”

Oh dear. I know this is what it’s like to buy shoes for people who fit standard sizes. But my son DOES NOT fit standard sizes.

“You can return anything for a refund for up to 30 days,” she said, smiling and cocking her head to the side hopefully.

I bought them.

When I entered the house, my husband gave me a puzzled look. He’d seen shoe boxes coming in and going out of our abode for the last few days.

“What did you buy?”

“A pair of shoes.”

“Another pair?”

“The other ones didn’t fit!”

I called my son up to try them. “What do you think?” I said. He smiled, and I could tell they met the cool factor.

Then we tried to put one on.

Remember that first pair of Nike Air Force high tops we got?

This shoe was made the same way. For someone with ZERO in-step.

You can imagine the salesperson’s surprise when I returned with them the next day and became the first disappointed customer. "They didn't fit," I said simply.

I was frustrated, but I wasn’t giving up. I started surfing the web looking for other types of high-top shoes. I came across this Ecco site and thought these shoes looked cool, well made and sturdy. And, they had a velcro closure. I chatted with a service rep who told me they came without insoles, which is handy for orthotics.

I ordered them.

The Ecco shoes arrived. They were gorgeous. Beautifully made. I wish I could afford a pair myself. But they didn’t fit.

I posted a message on the Three To Be Facebook group, to ask other parents for shoes that work well with orthotics.

One mom suggested DC shoes, because they’re wider than usual. I went to dcshoes.com. I thought these might work. But couldn’t I get these shoes somewhere locally? I went to a SportChek, but it turned out to be one that hardly stocks any kids’ shoes. I went to “Find a store” on the DC shoes website and typed in my postal code. It pulled up a store called CORE on Queen St. E. It was 8 o’clock at night, but I called.

“I’m looking for a Plae high-top shoe in a boys size 2,” I said.

“This is a sports marketing agency,” the woman said, while music blared in the background.

“Well, your company is listed on the DC shoes website as a distributor. Did you used to be a shoe store?”

This woman wasn’t interested in prior incarnations of the building.

So I ordered the DC pair online.

They were my last shot, because my son was leaving for camp and the window for having a lift put on them was closing.

DC Shoes sent me a tracking number, and everything was going according to plan. Then I got an e-mail alert to say the delivery date was being delayed four business days. It would take that time, the note said, to bring the shoes from the U.S. through customs at the Canadian border. What? Four days!? Was someone walking them over? I didn’t have four days.

I messaged the company to complain that they weren’t honouring their original delivery date. They were not moved, on compassionate grounds, to find a solution.

The DC Shoes arrived the day before my son went to camp. They didn’t fit. I had to pay the courier to send that pair back.

I couldn’t believe that I’d been on this mission for over a month, and had nothing to show for it.

To rub salt in the wound, Nike had already designed an "accessible" shoe. 

The LeBron Soldier 10 FlyEase was developed for a student with cerebral palsy who needed a shoe that fastened without laces. It has an ankle zipper that makes it easy to put on and do up.

In our April issue of BLOOM, we gave a shout out to Nike for the latest version of this FlyEase, noting that LeBron James had handed out pairs to kids at the Cleveland Clinic Children’s Hospital for Rehabilitation.

At the time, I thought they looked perfect for my son.

But when I sent a picture to the orthotist, he said the sole was too narrow in the middle to work with a lift.

Huh?

You mean Nike’s accessible shoe isn’t accessible for my son?

I’d watched the videos about how this shoe was designed. I’d posted all over social media, letting all my disability friends know about it.

If Nike’s accessible shoe didn’t fit my son’s foot, what would?

I went back to Nike.com and noticed they offer customers the ability to customize their shoes in a million ways (slight exaggeration). In boys’ shoes, you’re given 11 options for things like tongue, swoosh, midsole treatment and laces. Within each of those categories, there are dozens of colour options to choose from. You can even get polka dots for goodness sake. You can choose whether to have the Nike name on the back of the shoe. Or to leave it blank. Frankly, I got tired of clicking on all of the possibilities.

Why, I thought, isn’t it possible to order a lift in a standard size from the manufacturer, instead of having to take your shoes to an orthotist and pay that person, in addition to what you pay for the shoe? And if the lift came from the manufacturer, it could be designed to match perfectly, not stand out, which is how some of the lifts end up looking.

How hard could it be to design a lift in a couple of common sizes that can be put on and taken off a shoe? It didn’t sound like rocket science to me.

I remembered that the Nike guy who designed the FlyEase shoe with the zipper was called Tobie (unusual name). I googled “Tobie Nike e-mail” but I couldn’t find his e-mail. I did find his last name: Hatfield.

So I called the corporate offices.

I asked for his e-mail.

“We aren’t able to give out e-mails,” the woman said. “But I can give you his number.”

Bingo, I thought.

I called and left a detailed message. I explained that I’d shared the FlyEase with our BLOOM readers in 181 countries. Then I said I’d looked at all the ways people can customize their Nike shoes, and I was frustrated that there wasn’t an option to purchase a lift, which is something my son needs. Wasn’t it possible to make standard, removable lifts that could benefit people with disabilities?

I was excited. Maybe Tobie would be interested in this idea.

I didn’t hear back from Tobie.

I did get a call from Molly (these Nike folks have hip names, huh?), who apparently works with Tobie.

Molly said Tobie got my message, but was unable to personally respond. She said they had floated the idea of customizable lifts in the past, and it’s something they hope to do in the future. But there were no immediate plans.

Which left me back at ground zero.

AAAAAHHHH.

I went back to the website.

Maybe I would purchase a pair of the FlyEase ANYWAY, just to get them in my hands. Maybe I could find someone who could work a miracle by affixing a lift onto them.

Then I realized the shoe didn't come in a size 2. The sizes you could click on started with a 3.5.

Really? Why?

Why would a kid wearing a 3.5 be more likely to want this shoe than a kid that wore a size 2? A kid who needs the access due to disability in a 3.5 would also need the access in a size 2. Had Nike done some kind of sophisticated buying pattern analysis on this?

I typed in my e-mail and a question: Why isn't it possible to purchase this product in a size 2 or 3?, I asked.

Nike e-mailed to thank me for my question. I can’t find their response now. They said they would share my feedback. But when I checked back days later, you could still only buy the product in size 3.5 and up. Ditto when I looked today.

I do not like giving up. I do not give up easily. Anyone who knows anything about disability, knows that a parent will go to the ends of the earth to get something for their disabled child, to have them included, especially if that something is freely available to other children.

And that's how I ended up thinking about the fact that I'd had to write an essay in university about Sir Gaiwan and the Green Knight. I felt like one of King Arthur's knights, who kept coming up against impossible tests. Heck, I'd gotten an 85 in a course on Chaucer's Canterbury Tales. But in all of the legends I could remember, there was some kind of resolution, some happily-ever after, even if it wasn't perfect.

Why wouldn’t a company as big and successful as Nike design a few accessible shoes with different features, and with the ability to customize things like a lift? I know it’s not a big market. But they've received GREAT press for the FlyEase. That media is worth its weight in gold. Access options allow people to WEAR their shoes, period. Not just decorate them. Who can't get behind that?

My trial is not over. Yet.

Friday, August 11, 2017

A doctor reveals her hidden disability


By Louise Kinross


Dr. Paige Church is a neonatologist at Sunnybrook Health Sciences Centre and a developmental pediatrician who sees children with spina bifida at Holland Bloorview. Last Monday, she wrote about what it’s like to be both a doctor and a person with a disability in a JAMA Pediatrics article. Paige has spina bifida, and she begins the riveting piece with her own medical record.

BLOOM: You and I did an interview a couple of years ago, but you decided it wasn’t the right time to share your story. What changed?


Paige Church: I think our conversation instigated a lot of reflection, and then maturity and time added perspective. I had to think and think and think about how to tell the story in a way that maintains dignity and privacy, but that draws attention to the issues that are woven into it.

BLOOM: What do you hope health professionals take from it?

Paige Church:
That we need to start being more individualized, and not textbook, in conversations with parents whose child may have a disabling condition. Trainees at times have found it frustrating that there’s no formula. They want to cling to ‘If this happens, then this is what I do.’ I think when it gets into conversations around disability and living with x, y or z, it isn’t that easy to formulate that life into a simple package. Messaging that it is simple is a mistake.

BLOOM: How were you taught to counsel parents about a pregnancy that involves a disability?


Paige Church: There are essential components that need to be conveyed, but we make the mistake of simplifying it to such a degree that you can do it the same for everyone. We need to focus a lot more on exploring [each] family's structure and values and perspectives. 
I might spend an hour just talking to one couple about who they are: Their jobs, their values, their religion, their extended family, their thoughts about disability.

And then convey essential information in real-life terms, not medical labels that often don't make sense. We need to describe the day-to-day outcomes that are possible, and explore how this information fits into a family and their resources and challenges. There isn't a specific recipe for any given condition. It has to flow from the questions, concerns or insights that [a particular] family shares.


I worked with and learned from Adrienne Asch, who was an American bioethicist and disability advocate. She taught me a lot. She challenged me to think about how families are not clubs. You don't pick your members. Certainly I want children to feel loved and accepted and that factors into my counselling significantly.  

BLOOM: In your article you talk about how the effort to appear normal in your life and work is exhausting. What motivated you to want to appear normal?


Paige Church: I might be making a sweeping generalization, but I think for kids who grow up with a disabling condition like mine, where there are no outward signs, you have two paths to walk when you get to school. One is that the school treats you like everyone else, and you keep quiet about your extra issues. The other is to start sharing information that is quite private. When you get into bladder and bowel management, how do you do that in a way that isn’t stigmatized or bullied? As a child, I think I just perceived the stigma and decided to go the way of least resistance, and keep this all very quiet.

BLOOM: I’ve heard some unbelievable stories about children who are incontinent, and how they don't drink for the entire school day to avoid having an accident.

Paige Church: Yes, this is a strategy that's used. It's not a good one, but it's reinforced because it works, at least in the moment. I certainly have used it myself. It’s a strategy we use when we can’t afford to have problems. When I had an appendicocecostomy, my surgeon said ‘Why am I doing major surgery on you?’ I said ‘Do you realize that I've been limited to eating a handful of crackers for the whole day? I can’t afford to have an off day. I can't afford to not be available to go into an emergency in the NICU.’

BLOOM: I wasn’t clear on what that surgery was.


Paige Church:
The distal end of the appendix is cut off to create a hollow tube and channelled through the abdominal wall to make a stoma you can put a catheter into. This is an option for some children with spina bifida and other conditions associated with fecal incontinence to evacuate the bowel once a day in a controlled setting. 

BLOOM: But before the surgery you didn’t eat during the day? So you were starving?


Paige Church:
I’ve got more dental bills than I can count. You eat candy most of the time.

BLOOM: Doesn’t it seem unfortunate that a person has to have a major surgery for incontinence?

Paige Church: No. It was life-changing for me.

It takes the pressure off. It gets you back to being like everyone else with a degree of control over these private functions. It still isn’t perfect. But if six out of seven days are more controlled, it allows you to focus on other aspects of your life, without being consumed by worry.

BLOOM: Because you have firsthand understanding of spina bifida, you must have had unusual conversations with youth with spina bifida, in the early days before you shared about your experience.


Paige Church: Early on I looked like I was a real expert, which was kind of nice. I knew a lot of the intimate details. Over the years I’ve learned there’s no way to say ‘I have spina bifida, too,’ because there are a thousand different types and many ways a person can be affected.

As a resident, I once shared when a baby was just born that I had spina bifida. But the baby’s level of involvement was different than mine. It set the stage for expectation, and, as a result, I worry that it did more harm than help with bonding.

Now I share my story on an individual basis. It may be with parents when their children are toddlers. Or with older children who are struggling with some aspect of the condition, and I can share my story to lend insight.

BLOOM: In your article you talk about how the medical world views disability in a black and white way as a negative. You were taught that telling someone they have a disability is equivalent to telling someone they have cancer or will die.


Paige Church: Absolutely.

BLOOM: What I got from the article was that your experience of disability is the opposite of simple. That’s it’s rich and complex and full of ambiguity.


Paige Church:
Yes, and that richness and ambiguity is not captured anywhere in medicine. For every horrible thing I’ve experienced, I can say there are five things that have been great. For example, if I didn’t have spina bifida, I wouldn’t have my daughter, who we adopted. And my life would not be full without her. And I wouldn’t want my own child in a trade for her. If I could have, I’d have had more of her.

BLOOM: You note in the article that your challenges with spina bifida helped you pick a fabulous husband.

Paige Church: It shapes who you are. Because of some of my obstacles, I grew and changed. I kept looking and waiting for someone who wouldn't see the challenges, but rather would see me.

BLOOM: You say that you provide counselling that is balanced, sensitive, thoughtful and individualized, rather than objective. What does the word objective mean in medicine?


Paige Church: It’s supposed to mean you don’t have any bias. You’re not bringing into the discussion anything that is subjective or is your interpretation. That’s not necessarily a bad thing. But it does become a problem when you think about the fact that it’s impossible to not have some degree of inherent subjectivity.




Tuesday, August 8, 2017

A cousin's memory fuels this Kenyan trainee

By Louise Kinross

Susan Wamithi grew up in Nairobi, Kenya. But her medical studies have taken her from Alabama to Grenada to England to Nairobi to Toronto. She’s now in her second year of a developmental pediatrics fellowship at Holland Bloorview. She plans to take what she learns back to Nairobi to develop the first program in developmental pediatrics—caring for children with a variety of physical and developmental disabilities—at Aga Khan University Hospital. 

BLOOM: What drew you into developmental pediatrics?

Susan Wamithi: I grew up with a cousin who had cerebral palsy. She passed away when she was 12. She had spastic quadriplegia and my aunt used to bring her over and carry her up the stairs into our house. She was always smiling and she had really nice hair, so I would braid her hair. Now that I’m learning more about pain in cerebral palsy, I wonder ‘When was she in pain?’ And how did my aunt manoeuvre the transport system, because she didn’t have a wheelchair? We weren’t made to feel she was different from us, and we accepted her disability.

I also had an interest in medicine. When I was eight I was in a road traffic accident and I was hospitalized. I was curious and I loved science, and there was a nurse who explained everything she was doing and that got me interested.

BLOOM: How did you decide to work with children?


Susan Wamithi: I had a neurology professor who motivated me to pursue a career in developmental pediatrics. He talked about the great work that parents in Kenya were doing for their kids with disabilities. Mothers rallied together to have walks where they raised funds for different therapies. Our system is both private and public, but you still have to pay a certain amount in the public system. When I expressed interest in developmental pediatrics, I learned that the dean of medicine at Aga Khan is a Canadian. I met with him and he told me about this program.

BLOOM: Why did you choose Holland Bloorview?

Susan Wamithi: The fact that it’s family-centred. When I looked at the website, it’s seeing the children with their families and seeing the type of support families get. Seeing the funding families get for adapted equipment. That tied in with what happened with my cousin. I kept wondering whether those resources weren’t available to my aunt. I’ve never asked. I wanted to see what those supports looked like. I’m always thinking about how I can take what I’m learning here back home to help our families, where we don’t have enough resources.

BLOOM: Are there many developmental pediatricians in Kenya?

Susan Wamithi: There are only two that I know of. I’m being sponsored by Aga Khan University.

BLOOM: What is a typical day like here?

Susan Wamithi: We’re on blocks of rotations in different clinics. So I may be in the neuromotor or child development clinics.

BLOOM: Do you meet with the families on your own?

Susan Wamithi: Yes, we see clients on our own and then we go back with the staff and present our work. It’s a training program, so if you forgot to ask something, the staff will teach you. You have objectives and you’re taught how to manage different disabilities and the resources that are available here and elsewhere. We provide very individualized care based on a child’s needs.

BLOOM: What is most challenging?


Susan Wamithi: Delivering bad news to parents. I’m a parent myself, and you can’t imagine the type of grief that they go through. I want to be able to give some hope, and find ways to support families so they continue to see their child’s strengths. Some parents will cry the whole time, and others will ask questions and accept that ‘This is it, what’s next?’ If we’re using an interpreter, I always hope that what I’m saying is being interpreted in a sensitive manner. You kind of share their grief. What’s been hard for me is coming from my work as a general pediatrician, where a child has a sore throat, I give them an antibiotic and they come back and say ‘My throat is fine.’ There’s nothing I’m going to write here that’s going to change what happened to the brain in a child I see, and the consequences we’re seeing. That’s emotionally draining.

BLOOM: Do you do anything that helps you cope?


Susan Wamithi:
I’m spiritual. I had to come to terms with the fact that I don’t know why this happened to this child, but at least there’s some support I can give them. I ask God to give me the wisdom to know what words to say to this parent. I feel this is such a pivotal point for them, and I don’t want them to change how they see their child. My biggest fear is that the parent will just see what the child can’t do. Or that the parent won’t believe what I’m saying about the diagnosis, and the child won’t be linked up with the right resources. I have to be creative to find a way to take a parent through this journey. From the first time we sit down, I need to gain their trust, and make them see I’m on their side as an advocate for their child. When I give the diagnosis, it’s not me against them, but us helping the child.

BLOOM: What do you love about your work?


Susan Wamithi:
I love being able to support families to see their children differently. That’s what I’m passionate about. That comes from my background with my aunt, who was always cheerful. She’d come and bake with us and her daughter was right there and included. I love seeing children light up when I ask them what they’re doing for the summer, because we’re allowing them to be children and go to camps and enjoy their life. I love finding out about resources for families.

BLOOM: Have your thoughts on disability changed since you came here?

Susan Wamithi:
Back home I was a pediatrician. So if I suspected a child had autism, I would refer them to a clinic, but I never knew what resources were available in the community. What I’ve learned here is how to support families in finding different funding agencies. In Kenya, we have organizations that raise funds for cerebral palsy and autism. When I go back, I want to work with these organizations to make sure newly-diagnosed patients are connected with them.

BLOOM: If you could change one thing about the health system, what would it be?


Susan Wamithi:
The waiting times. Imagine the parent whose pediatrician says ‘I think your child has autism,’ and then you have to wait six months to get a confirmation from me. I worry about how that parent is sleeping at night, and how it impacts how they interact with their child. Do they become depressed?



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Thursday, August 3, 2017

Are you a kid? Cliff wants to talk to you

By Louise Kinross

Cliff Lee first came to Holland Bloorview as a seven-year-old, when he was hospitalized for a brain injury following a school-yard accident.

Nineteen years later he’s back as the hospital’s kids’ feedback specialist, here to interview children and youth about the care they’ve received.

“What’s important about what we’re doing now is that we’re giving kids a voice,” says Cliff, who works as a medical secretary and studied psychology at the University of Toronto. “Growing up, at my appointments, the doctors and clinicians always talked to my parents a lot and I felt like I didn’t have a say in my own health decisions.”

Cliff is actively seeking inpatients and outpatients to participate in a 30-minute survey that asks questions like “How safe do you feel at the hospital?,” “Does your care team speak directly to you?” and “Is the care you’re getting helping you meet your goals?”

Cliff says he wants to interview a range of clients, including children who don’t communicate in conventional ways and those who need an interpreter. Parents are able to sit in on interviews.

Cliff hopes to do 50 interviews this summer, and another 50 in the fall. To participate, kids or parents can e-mail Cliff at kidsfeedback@hollandbloorview.ca to set a time.

In addition to being a client, Cliff has volunteered in recreation therapy with our inpatients, acts as a youth mentor and also participated in our Youth To Work program. “Holland Bloorview feels like home,” he says.

When Cliff was an inpatient, he says his primary emotion was one of frustration. “I wanted to go outside and do everything other kids were doing, but I was confined to a hospital bed, then I progressed to a wheelchair and then a walker. I had a bit of cognitive delay that made things like math difficult later on.”

At the time, Cliff says he wanted “to be normal, like other kids.”

Now, he sees his differences as part of who he is. “I need to learn to adapt to what I’m good at and to the things I might struggle with physically or cognitively. But everyone has strengths and weaknesses.”

As a former client, he’s “excited to help give kids here a voice in terms of how we’re doing and, most important, how we can improve.”

Cliff can be reached at kidsfeedback@hollandbloorview.ca or, if you see him in the halls with his iPad, introduce yourself.

'We laugh, we encourage each other, and there's no judging'

Photos by Chelsea Dee

By Louise Kinross


In 2013, BLOOM covered a unique sewing project in Maai Mahiu, northwest of Nairobi, that was changing the lives of Kenyan mothers of children with disabilities. The program—then called Malaika Mums—is still flourishing and is now called Ubuntu Made. Ubuntu is an African philosophy meaning “I am because we are.” Mothers in the program make cotton bags, reusable coffee sleeves and beaded bracelets that are sold to provide them with income and support their children in an onsite school. We recently brought you an update. Now we interview Teresia Mugure (photo above, with son James, who is nine). James has attended the school for six years.

BLOOM: Tell us about your child.

Teresia Mugure: Jimmy, as he is fondly called by everyone, is a very joyful, happy, [active] and a very playful boy. He has intellectual disability and hyperactivity and is partially deaf. He also had delayed milestones like walking. He enjoys playing with other children.

BLOOM: How does Jimmy communicate?

Teresia Mugure: He communicates with sign language—by pointing to things or taking your hand and showing you what he wants—body language and facial expressions. Hearing aids help him hear at a high pitch.

BLOOM: How is disability viewed in Kenya?

Teresia Mugure: The common myth is that disability is a curse because the mother, or another family member, did something bad.

BLOOM: How did you feel when you learned Jimmy had disabilities?


Teresia Mugure: Sad, confused and lost.

BLOOM: What impact did Jimmy’s disabilities have on your family?

Teresia Mugure: Initially it had a negative impact, especially from family and friends. They didn’t know anything about disability, so it was a shocker for most of them. Then there were the myths associated with disability.

But right now, we are well informed about his condition and how to manage it. Now they all love Jimmy and have learned that disability is not a curse. I have accepted my child as he is and am happy to have him. I enjoy spending time with him. He keeps me alert and I’ve learned so much about life just by having him.

BLOOM: What would have happened if you weren’t able to get work at Ubuntu Made, and for Jimmy to go to their special needs school?

Teresia Mugure: I just don’t know. Maybe I could have been homeless. But God is faithful and I have a job. When Jimmy joined at age three, he was not able to walk or do anything for himself. Without Ubuntu, my child would have never learned how to walk, and maybe his condition would have gotten worse.

BLOOM: I understand some fathers there are unable to accept their child’s disability. Is Jimmy’s father involved in his life?

Teresia Mugure: Yes, his name is Solomon and he is very supportive to the family and tries his best to support me to raise our two children. I also have another son who is 17 years old and completed his secondary education last year.

BLOOM: Do you like working with other mothers who also have children with disabilities?


Teresia Mugure: Yes. We understand each other better and through psychosocial support sessions we laugh, we encourage one another and there's no judging.

BLOOM: What is your favourite part of your job?

Teresia Mugure: Sewing. I like being on the machine and stitching. When I see the end product I’m always proud of myself. At times I cry when I have a flashback and see where we started, and where we are now. All I can say is ‘Thank you Lord.’

BLOOM: How has having a job changed things for your family?

Teresia Mugure: Working at Ubuntu Made has been positive. I’m able to take care of Jimmy and provide the best care possible. I can provide food, shelter, education and clothing. I’m a proud mother. I’ve earned respect in the community, among relatives and the general public.

BLOOM: What have you learned since being part of the program?


Teresia Mugure: I’ve learned to appreciate life and the importance of working as a team, family values, and caring for and loving my child.

BLOOM: How is Jimmy doing in the Ubuntu kids’ program?

Teresia Mugure:
I have seen a total transformation in my boy. When he joined, he was not able to walk or do anything for himself. Right now he is the most active child in the program.

I am forever grateful and thankful to the staff who have journeyed with me. I’m at a loss for words. I will never be able to repay them for the services received.

BLOOM: What advice would you give to other mothers who live in places where disabled children are not accepted?

Teresia Mugure: Disability is not a life sentence and it is very manageable. I would ask organizations working in the field to try to reach and educate as many mothers as possible. There are a lot of false myths associated with disability in Kenya and Africa in general.

BLOOM: What are your dreams for the future?


Teresia Mugure: My dreams? Grow in my job, invest and be able to take care of my family. I’m too old to go back to school, but I have gained skills since I jointed Ubuntu. I’d like to talk to other mothers raising children with special needs.

Monday, July 17, 2017

Foundation helps disabled students 'just like me'

By Louise Kinross

After a skiing accident that injured her spine and shoulder, Tamara (Tammy) Gordon had to learn to write with her opposite hand and get around in a wheelchair.

While studying at York University, her mom Marcia attended class with her to take notes.

That’s where the pair noticed how hard it was for other students with disabilities to manage the extra expenses they had at school.

“Some of them were in school for years, because they had to take breaks between courses because they didn’t have enough funding,” Tammy says. “Others had to drop out because of the costs of taxis, tutoring or special equipment that would put them on an even playing field with other students. My mom and I thought ‘Why not start a foundation in my name to help other students just like me?’”

In 2013, The Tamara Gordon Foundation received charitable status. Each year it offers grants from $750 to $3,000 to university or college students with physical disabilities in Ontario.

“My advice to students with disabilities is don’t give up and continue your education because that’s the key to life,” Tammy says. “Work hard, get your high school credits and pursue post-secondary education.”

That’s what Tammy, now 31, did.

At 16, she was an elite basketball player who was being scouted by American universities. Then she became partially paralyzed as a result of a skiing accident.

She lived as in inpatient at Lyndhurst for five months. “It was very long and very hard,” she says. “Before my accident I was left-handed, but I sustained a brachial plexus injury to my left shoulder and lost the use of my dominant hand. So I had to learn how to use my right hand.


Tammy continued with school onsite and her mom decorated her room “so it looked just like my room at my house,” she says. “I had teddy bears and cards from classmates and teammates, and I even used my own special blanket from home on the bed.”

Daily pain was the biggest challenge, she says. “I definitely wasn’t used to that. Pain medication didn’t really help me, so I’d just try to fight through the pain. After a 12-hour surgery, I had to wear a special back brace for a good while that was very uncomfortable. The process of learning to sit up again and transfer to a chair was long and tedious.”

Something that helped Tammy adapt was talking to other patients who were further on in their rehab journey. “I definitely think it changed me as a person,” she says. “Although I played sports before the accident, I was really shy. The accident really brought me out of my shell. Although I wasn’t among people my age, I was able to talk to the other inpatients at Lyndhurst and learn from their experiences. Later on I got into motivational speaking where I talk about my experiences and encourage others, no matter what they face in life, don’t give up. Even if something like this happens to you, you can still achieve your dreams.”

After her rehab, Tammy tried to return to her old high school, but it didn’t have an elevator large enough to fit her wheelchair “and being around my old friends was tough. It was too hard for them to see me in a wheelchair. Some of them almost took pity on me and felt sorry for me. And others couldn’t make eye contact with me. That was even worse.”

She transferred to an accessible school but then became ill and had to finish her high school through a home program. “I still managed to finish on time with my graduating class.”

Today Tammy works at her foundation as well as being a customer relations coordinator for TD Bank. “I love working at TD because I’m treated like everyone else,” she says. “ Yes, I do need some accommodations in regards to my work station and personal assistance. TD is an awesome company to work for and I’ve been there 11 years.

Tammy says recipients of her foundation’s grants are chosen based on community service and grades. The foundation is holding its first fundraising gala on July 29.

She says her mom played a big role in her recovery after her accident. “Parents, be strong, because we feed off your energy,” she says. “Stay positive and be encouraging. Whatever dreams your child has, let them know it’s possible to achieve. It might take longer or be a harder struggle, but they can get there with the right support and encouragement.”

Tuesday, July 11, 2017

Don't let feeding tube get in the way of fun

By Louise Kinross

Over the last year Jennifer Choi Han made 10 videos about family life with a child with severe disabilities who is fed real, blended food through a g-tube. The videos feature Andrew, 7, who has cerebral palsy, and his twin Eleanor, their sister Jane, 5, and brother Mikey, 3.

In the videos, the family, who live in Long Island, go to The Nutcracker ballet, visit a fall festival, spend a day at the beach, check out a candy store, go to a barbecue and meet Santa Claus. The videos show Andrew eating the family’s breakfast, after it’s blended, at home before leaving, and the meals his family feeds him while out, wherever they happen to be. The music is upbeat, the kids are happy, and Andrew is integrated into everything they do.

It wasn’t always this way. Back in 2012, Jennifer wrote a piece for BLOOM about how miserable life was when they were feeding Andrew formula prescribed by doctors. It exacerbated his reflux, and Andrew spent his days retching, vomiting, not sleeping and losing weight. He even stopped smiling. “He was so unhappy because he was so hungry and wasn’t sleeping and had many, many seizures,” Jennifer says. “I never expected to take him out in public places, to actually go out and enjoy being out. Our vacations were disasters.”

BLOOM interviewed Jennifer about her video series A Day In The Life with Cerebral Palsy and a G-tube and how much their life has changed since they switched Andrew to a diet of real, blended food.

BLOOM: Tell us a bit about Andrew.

Jennifer Choi Han: He has spastic quadriplegia and controlled epilepsy. He’s also blind and doesn’t speak. But we know when he’s happy and sad and when you’re around him, you learn his language. He’s a very giggly boy and he responds to touch and sound. He loves music and he loves people. When people talk to him he responds with moans, and the conversation goes back and forth like that. If he’s bored he’ll sigh. We go to church every Sunday and he always sighs in the middle of the service. His siblings play with him and sing with him. Right now the kids love the Troll soundtrack from Disney. It makes Andrew freak out in happiness and he’ll sing along and laugh and kick. Andrew loves school because he recognizes voices and is very sociable. He’s the happiest of our four children.

BLOOM: Why did you start your video series?

Jennifer Choi Han: For a very practical and utilitarian reason: I wanted to raise awareness that there’s something called a blenderized diet and I have a strong belief it should be a treatment option for severe reflux. It’s also a healthy way of living with a feeding tube. In my mind, it saved Andrew’s life. After the BLOOM article I received lots of comments on my blog and I knew people were going to the site because they wanted to do the blenderized diet. I had it tucked in my mind that one day I would make videos about how we did it. Recently I was ready because my kids were older and Andrew had been medically stable for a few years. I wanted to make videos that have a very warm and cheerful vibe.

BLOOM: They are fun and upbeat and full of happiness.


Jennifer Choi Han: Learning about Andrew’s brain damage was completely devastating. In my mind, it was the worst thing that could happen to a family. In his first years, Andrew was sad and miserable. I scoured online forums looking for stories of families and trying to predict what his future held. I watched three videos on YouTube and I cried my eyes out. One was of a little girl who was in a diaper prone on a mat, moaning, and people were watching her. Another was parents talking and sad music in the background.

What started off as practical videos shifted to ‘a day in the life’ videos that offer a narrative of hope about a child who’s happy and out and about, enjoying the world and seen by others.

BLOOM: Many of your videos are in New York City. Isn’t that a challenge for accessibility?

Jennifer Choi Han: It’s not super accessible, but it’s doable. When we go to the city we always make sure to drive and avoid crowded places. We go to big, spacious places. Touristy places tend to be more accessible. For example, Central Park is fairly accessible. We took Andrew to the ballet and he really enjoyed it because he loves music. We take Andrew to the pool regularly because kids with cerebral palsy are happiest in the water. Usually I research stuff like crazy before we go.

BLOOM: In one video you’re on the subway.

Jennifer Choi Han: That’s the recently built Second Avenue Subway line. It’s outrageously accessible with ramps and elevators and even a wheelchair boarding area by the conductor’s window. Unfortunately, the other lines aren't stroller or wheelchair friendly. When Andrew was younger I would check online to plan ahead, but even stations that were supposed to be accessible weren’t because elevators were broken or something hadn’t been updated. So we stopped using the subway.

BLOOM: You said you rarely see other people with disabilities when you go out.


Jennifer Choi Han: I suspect that’s because of the whole bathroom situation. There are not a lot of accessible bathrooms—unless you’re okay putting your loved one on the floor. We’re lucky at this point because Andrew is very small. We can change him in the car. Sometimes we carry a sheet and change him on a park bench while my husband or his siblings hold up the sheet for privacy. As Andrew gets older, the bathroom thing will become a big issue because I need to preserve his dignity.

BLOOM: In the videos, you feed Andrew in public, wherever you happen to be. Is that intentional?

Jennifer Choi Han: Yes. I feel very strongly that people with disabilities need to be seen. Disability is part of the human experience. I never see disabled people out and about, and I feel in order for the world to be more open and inclusive, and to not fear disability, everyone needs to see each other. When Andrew was young, I was very self-conscious about stares and about what I was doing, but now I’m not at all. I own this role we’ve taken on and I see the benefits.

We talk about the ‘Andrew effect.’ When we go out with Andrew, children come up and stare and ask questions like ‘What’s wrong with him?’ I love when they ask questions because I can help answer them. I’ll say ‘You know how you or I drink or eat with our mouth, and then it goes down our throat and into our belly? Well, Andrew’s mouth doesn’t work well, so his food and drink goes straight into his belly.’ If they ask why, I say ‘Andrew has a boo boo on his brain, so he’s not able to use his mouth as well.’ It makes so much sense to a little kid. There are also lots of kid-friendly parts of feeding Andrew, so I’ll ask ‘Do you want to help?’ They can put in the water or hold something for me.

My youngest child, Mikey, is a ham and he’s very perceptive of other people’s reactions. If strangers stare, he’ll go up and hold Andrew’s hand, cuddle with him or kiss him and sing songs.

BLOOM: Feeding Andrew looks easy in the videos. But isn’t there a lot of planning? How do you make sure the food doesn’t go bad?

Jennifer Choi Han:
The crazy thing is how easy it is. I hate cooking. My three-year-old could tell you how to feed Andrew. When I first started out, I was taking home-made blends out, and that requires bringing ice packs and keeping the food cold. But now that there are pre-made, blended products on the market, we don’t need to pack ice or worry about food spoiling. These products are shelf stable for two years.

So if we’re at the beach, I’ll open a pre-blended package that might have salmon, oats and squash in it. The only supplies you need are a syringe, extension tube and a plunger to push the food through. I take a zip lock bag and put one meal plus all of the supplies, including bottled water, to flush and clean with. If we’re out for the entire day I’ll have four meals bags. It’s not onerous at all. In fact, it’s much more onerous getting snacks for my other children.

The two premade products I use are called Real Food Blends and Functional Formularies.

BLOOM: How have people reacted to the videos?

Jennifer Choi Han: When I made my first two-minute video, which was about how I bolus real food through a feeding tube, I expected maybe 100 views. Within the first week there were 1,000 views. Now there are over 6,000 on that video. People started to private message me to thank me, ask me questions and tell me how life-changing the diet had been for their child, which was very gratifying. My first 'day in the life' video has over 11,000 views. Who would have thought a video about cerebral palsy and feeding tubes would be viewed over 11,000 times? But the focus has moved from feeding tubes to a well-lived life.

BLOOM: You always look relaxed and energetic in the videos. Isn’t it physically exhausting managing Andrew’s needs and your other children’s needs
?

Jennifer Choi Han: There are two reasons I look quite refreshed: Andrew is happy and stable and I have a lot of resources. My mother lives with us and I consider her a primary caregiver as well. We also have a full-time nanny on top of that, and my husband is super hands-on and helpful. I work full-time as a teacher and my workplace is a two-minute drive from home. My husband is a physician, so with our two incomes, we have a lot of options.

It takes a village, and I have a village. A lot of parents, especially in the United States, don’t have a village. They don’t have resources, and that’s where things fall apart. When I strike people as refreshed and cheerful, I’m quick to tell them it’s because I have time to myself. My situation is not available to a lot of families. With our new administration, I’ve been taking part in a postcard campaign and making calls to legislators about health care.

I never could have imagined we would be at this place during those hard, early years. I really like my life now. I really like being Andrew’s mom and I love Andrew to pieces. It’s very therapeutic for me to make these videos and to view them.