Tuesday, June 29, 2010

Hospitalization costs

When my Dad was hospitalized last year, we quickly realized that our presence – or that of someone we hired – was necessary 24/7. My dad had no short-term-memory and became confused without someone to orient him. We hired a personal-support worker to sit with him at night.

The second evening, after receiving a diagnosis of advanced lung cancer, a nurse told me: “He may not make it through the night.” We were moved to a private room.

No one explained what to expect in terms of his death or how to comfort him. We were pretty much dumped; the only time we saw a nurse during that long night was when I went searching to beg for morphine.

If my mother and I hadn’t had our personal-support worker with us, I don’t know what we’d have done.

Those two nights cost $500. Afterwards, I wondered how on earth people managed the financial expense of having a vulnerable loved one in hospital for an extended period.

I now have some experience with that.

As you know, Ben had major hip and knee surgery on April 13. My husband and I took the week off. We took Ben home four days later. The next week we returned to work and had workers care for him at home from 9-4. It was then discovered that the hip hardware had dislodged and he had to have a second surgery to redo the hip on April 27. After that, he came to Bloorview where he was in a body cast for six weeks. He’s still at Bloorview doing the hard therapy it will take to get him walking again.

Ben is non-verbal and primarily uses sign language. I can’t imagine any parent leaving a non-verbal child alone in hospital – and certainly not one trapped in a body cast. We have three other children.

My husband sleeps at the hospital and during the week we have workers from 9 to 4. We have spent more than $6,000 in workers over the last 10 weeks.

We are not eligible for Assistance for Children with Severe Disabilities – an Ontario program to help parents cover extraordinary costs. It has an income cap of $63,421 for a family of four. However, even if we were eligible for this benefit, we would have spent more than the maximum $430 per month in the first week.

We do receive Ontario’s Special Services at Home funding – designed to get Ben into the community and provide parental respite. We are grateful for this funding, which gives us about five hours a week of worker support.

But our worker expenses over the last 10 weeks are significantly more than the annual amount we receive through this program.

When I asked the folks in Bloorview’s family resource centre about any other funding sources, they suggested I appeal to a service organization. No parent wants to ask a service group for charity.

They also suggested I call respiteservices.com, which is a group of agencies working together to provide comprehensive respite services in Toronto. I spoke to the facilitator who said she’d look into our situation, but that there weren’t any obvious sources to tap.

We are lucky. Our family has helped us. I've heard about families whose kids have been in rehab for months and gone bankrupt, lost houses, or had to sell businesses. The only way you can qualify for employment insurance – to take time off with your child – is if your child has a life-threatening condition. And that compassionate-care benefit covers only six weeks.

Nobody likes talking about money. But we need to recognize the true costs of hospitalization for kids with complex needs, even in our publicly-funded system.

Monday, June 28, 2010

Hard work

I'm hanging out with Ben today. He worked very hard in physio. He still has great difficulty straightening his left leg, but there's been a bit of improvement. Here we are afterwards taking a break with Sir Walter Melon!

Thursday, June 24, 2010

News stories of interest

Last night Ben and I went swimming in the heated pool at Bloorview -- the first time in months since before his surgery. He has a knee contracture because his leg was held in a bent position for so long in the cast -- which means that he can't straighten his leg, and until he can straighten his leg, he can't walk. However, the buoyancy and warmth of the water was incredibly relaxing. So for 1.5 hours we could float around and forget all about stretching out his tight, painful leg and the fact that he can't stand on it the way he used to.

Here are some recent news stories of note. Cheers, Louise

A struggle to educate the severely disabled
A feature in the New York Times spurred numerous comments from readers who felt education dollars were wasted on students with multiple disabilities. "We're polishing stones and dulling diamonds," one reader wrote.

Bill passed in Albany to make insurers pay for autism care
State lawmakers passed legislation this week that would require insurers to cover autism-related screenings, diagnoses and treatments.

Swedish theatre includes actors with intellectual disabilities
A groundbreaking theatre in Malmö, Sweden, makes people with intellectual disabilities equal partners in the creative process.

My disabled son's first time at camp
The decision was made. Part of me was terrified.

NIH awards $2.5 million to study osteoporosis in youth with Spina Bifida
"We don't know whether or not adolescents with spina bifida have differences in bone development resulting from their disease or if they're developing less bone mass because they're spending less time doing weight-bearing activities."

Gizmo enables woman with CP to run her own flower shop
An engineer designs a device that allows a woman to strip leaves and cut stems with one hand.

Pilot school for Asperger's hopes to open in fall
A mother hopes to open the first private school for children with Asperger's in Canada.

Wednesday, June 23, 2010

When siblings step in (part 2)

Pat Ellingson (right) grew up in Vancouver in a single-parent family with six children living on welfare. As one of the older kids, she took on the role of caregiver for her younger siblings, including sister Carol (left) who has a developmental disability. What makes Pat unusual is that at the age of 50, she became Carol's primary caregiver. Carol had lived with their mother until she died, and came to live with Pat and her partner Carolyn at age 45. I had a fascinating discussion with Pat about her relationship with her sister.

BLOOM: Describe your sister Carol.

Pat Ellingson: She’s 50 and in some ways she’s very high-functioning. She can’t read or write, but there are a lot of things she can do. She’s had a job for 30 years. She works at Burger King and she’s the hardest worker in the place. She’s in Special Olympics and a star bowler. She curls and swims and plays baseball. She’s a very easy-going person.

BLOOM: What effect did her disability have on you growing up?

Pat Ellingson: I was one of the oldest in a fairly dysfunctional family and just like we didn’t know we were poor, we didn’t know Carol was any different than anyone else. There were six kids, and she was part of the chaos. It wasn’t until I was maybe 10 or 11 that I realized we have to be more protective of her. We knew she had special needs, but she was one of us. We were worried about a lot of things, but it wasn’t until I was a teen and getting ready to move out that I really worried about Carol. As the main caregiver, I started to think: What will happen to Carol? Who’s going to pay attention to Carol and get her in programs? A lot of the support systems in Vancouver are strained to begin with and they do a very surface kind of thing, especially for someone like Carol, because she isn’t in dire need.

BLOOM: Siblings often resent that the family revolves around the child with special needs. Was that an issue for you?

Pat Ellingson: No. Because there were so many kids, and because she had a certain level of ability, no one got any special attention. We were never thinking we can’t have this or that because of Carol, but there was always an underlying, undescribed stress. There were times she was made fun of, and we were always a little on guard, expecting the worst from others.

BLOOM: How did you make the decision to have Carol come live with you?

Pat Ellingson: It was a tough one in some ways but it just seemed to happen somewhat naturally. Carol lived with my mother until she passed away. She went to live with one of my other sisters, but it didn’t work out. We tried to see if she would be accepted into a supported-living program in Vancouver, but we learned she had to be homeless before they would take her. One of the issues was that she did work and was living with family. There are a lot of weaknesses in the system in Ontario, but boy, when you live in British Columbia, it’s the worst. When we knew it wouldn’t work for her to live with my other sister, it became clear that we were the best option. Sometimes you have to step up to the plate. Whether living with us is best for Carol is a continuing question. We’re now at the stage where she’s been accepted into a Community Living program.

BLOOM: What have been some of the benefits of having Carol live with you?

Pat Ellingson: It’s made me understand and appreciate her a lot more. At the end of the day I think it’s made me more empathic and accepting, not just of people with challenges, but of people in general. Carol is easy to be with, she’ll do anything, and she makes you realize you can’t sweat the small stuff. Living with Carol has also given me a very different perspective on everything from how health programs are funded to employment. For example, Loblaw’s has a fabulous hiring ethic when it comes to people with special needs, but at Wal-Mart, they’ll take people with special needs as volunteers, but they won’t pay them. Carol applied for a job at Tim Horton’s and she didn’t even get a call back, and yet the “help wanted” sign was still up the next week. That was a bit shocking to me.

BLOOM: What does Carol do in her job at Burger King?

Pat Ellingson: In Vancouver, she worked on the fry station in the kitchen, and here she’s mostly in charge of cleaning the lobby and tables. Thank God for places like Burger King because it was one of the few places we could get her a job. But what happens is that she’s the hardest worker in the place but she’s taken advantage of. She does all the crap work that the rest of them don’t want to do. But because she wants the job, she doesn’t complain. She's been spit on and even here, in the early days, one employee hit her and was let go. Those are the things we hear about. They roll off her back in many ways. She works four hours a day.

BLOOM: What does Carol get out of her job?

Pat Ellingson: It’s self-esteem. She gets paid. And it’s social and gives her a feeling of worth and confidence.

BLOOM: How demanding is it having Carol live with you?

Pat Ellingson: It’s become part of our life. I think it’s become more challenging the longer she’s been here mostly because we're constantly trying to make it all work as we think it should—as opposed to accepting that if she doesn’t iron her pants that day, what’s the big deal? I always go back to my childhood. If she didn’t iron her pants, it was a reason for others to make fun of her. But being controlling and protective of Carol is not best for her. We have a basement apartment for Carol. She doesn’t cook for herself. She lives in our house and we’re with her as much as we can be, but I’m not sure we're doing the best thing for her. I work a lot. We don’t have any friends who could come and take care of Carol if we’re not able to be there. The ideal would be a hybrid where she could live with us and still receive services so that she’s kept active and she’s not sitting at home alone or bored. But the way the support system is set up, unless she’s out of the home, there is no support. We do need a break, but the amount of guilt is terrible. We’ve been away for three weekends in five years.

BLOOM: What is the community living program she’ll be part of?

Pat Ellingson: We’re going to experiment with her living in an apartment within a stone’s throw of where we live. It’s on a floor where there are other folks with special needs from her bowling team. We hope it will give her more socialization on a daily basis—and then we’ll do things with her in the evenings and on the weekends. The biggest concern that keeps us awake at night is that we’re not going to be here forever. If we’re always doing everything for her, knowing she is capable of doing a lot more than we let her, then who are we doing it for? The easiest thing is to leave her where she is—with us—and the hardest thing is moving her elsewhere because this will be more stress on us and probably in the short term, more time required to make sure she’s okay. We want Carol to have a life that is rich and includes all the things she currently does and one where she’s protected—whether we’re there or not. I was in an almost fatal car accident recently and it struck me: What would happen if I wasn’t here? Thank God I have a partner who is committed to Carol. But she’s 15 years older than Carol. What happens when she’s not here? Who can I leave money to for Carol, and how can I make sure they take care of her? I don’t think you can ever assume that the system will take good and appropriate care of your sibling with special needs. We don’t want her to be thrown into a situation at some point where there’s no family to do the oversight and provide the extra support she needs.

BLOOM: What support will she receive through the Community Living program?

Pat Ellingson: They’ve assessed her to receive six hours a week of care from a support worker. But we know she needs daily care, to make sure she gets up and goes to work and is dressed properly. I don't think it’s that they don't understand her needs, but the program doesn’t have the resources. The plus of placing her there is that some of the other folks on the same floor have 24/7 care, so she’ll have the advantage of that, and all of the support is from the same group of support workers. There are also two things she’s been invited to be part of—a special advocacy group where she’ll be trained to be an advocate for special-needs folks, and a food preparation course. It’s unfortunate that these types of things aren't available to the person if you live with family.

BLOOM: What advice would you give parents?

Pat Ellingson: Every family has its own dynamic. I think it’s important to try to make sure everyone gets attention and to recognize when siblings are helping to care for a brother or sister. Make it something they should be proud of, but also let them know how much you appreciate it. I remember my mom would say: “She’s your sister. It’s what you should be doing.” I think highlighting that caregiving is “over and above” is important.
Pat Ellingson is creative head of children's media at TVO.

Monday, June 21, 2010

Care notebooks keep you organized

Today we have a guest blog from Amy Julia Becker, mom to Penny, who has Down syndrome, and William. The white board above is a chart of the things the family was asked to work on when Penny was two. A variety of organizers have been created to help parents keep track of the plethora of information they receive about their child with special needs. Amy Julia writes about a care notebook that was developed at the Children’s Hospital of Philadelphia. If you do a search, you will see that these organizers have been created in a number of places. A Canadian version is available at: The Kit: Keeping it Together. Amy Julia is a writer and a student at Princeton Theological Seminary in New Jersey. At Thin Places she blogs about “theology, disability, children and parenting, education, and the intersection of grief and hope.” Thanks for sharing Amy Julia!
Care notebooks keep you organized
By Amy Julia Becker
I call it Penny’s “Helen Keller moment.”

Remember the scene from The Miracle Worker where Helen Keller understands for the first time that every word has a sign? That language is available to her, and that she can understand and be understood?

For us, it happened when Penny was 15-months old. We’d been working on sign language for months at that point, and she had picked up a few signs through countless repetition. “Food.” “Drink.” “More.” But that day, it was raining outside. A torrential rain, drumming on the slate roof and pooling on the ground. I held her on my hip as we looked out the window. I pointed and said, “Look, Penny, rain.” I wiggled my fingers through the air. She looked outside, looked at me, and signed “rain.” And then I pointed to the big tree. “Look, Penny, tree.” And I signed tree. Again, she looked outside, looked at me, and signed “tree” in a response. Within a month, she had fifty signs and was eager for more. Something had clicked.

Maybe it was destined to happen. Maybe no matter what had preceded it, at around 15-months our daughter would have figured out that every object has a name that she could learn and express. But I don’t think so. I think the only way it happened for her was an intricate combination of therapy, medical intervention and family support.

Only a month earlier, Penny had endured a procedure to close a hole in her heart. Within 24 hours, she was noticeably stronger. She seemed more attentive to the world around her, as if her body didn’t have to concentrate so much on pumping blood and could instead devote some energy to learning. It was her physical therapist who pointed out the difference.

Penny has Down syndrome. She’s had a number of minor health concerns, including mild hearing loss and tubes in her ears, blocked tear ducts, and this heart procedure. She wears glasses and has an Individualized Education Plan and by the time she was two, four different therapists visited our house weekly to teach us how to help her learn. It wasn’t until our son was born that I realized the collaboration required to aid Penny’s development. Where Penny needed repetition and instruction with tasks broken into their component parts, William just did it. I didn’t teach him to roll over. His body took over and there he was, on his belly. I didn’t teach him to keep his drool in his mouth. He simply learned to swallow. With Penny, those things took repetition, and documentation, and instruction, step by step by step.

Kids with special needs don’t need more love than their typically-developing siblings. But they do need more care. Kim Schadt, of the Trisomy 21 Clinic at the Children’s Hospital of Philadelphia, knows these needs firsthand. She grew up with a brother with cerebral palsy, and she has a nephew with Down syndrome and autism.

Kim worked with social workers and other professionals at CHOP to secure a grant for Care Notebooks – binders that provide a way for families to organize medical, educational, therapeutic and personal information in one place. Kim tells the story of her weekend babysitting for her nephew and his siblings. “He has this lizard that he loves and can’t sleep without. And of course, it’s bedtime, and we can’t find the lizard. He’s non-verbal, so he couldn’t tell me where to look. Thankfully, his parents had written in his care notebook where I could find ‘replacement’ lizards, and everyone was able to sleep well that night.”

Care notebooks are a way to acknowledge the intentional and integrated effort it takes for our children with special needs to thrive. The materials to put them together are offered through a number of hospitals. In the CHOP model tabs include “Medical Information,” “Family,” “Education/Family Resources,” “Daily Routines,” and “Insurance/Legal/Financial,” with forms and explanations for what each of those sections should include.

Because we live near the hospital, a social worker was willing to meet with a group of us to instruct us in putting the information together. I arrived with a bag full of papers. The session helped me sort through what was important, what should be filed, and what could be thrown away. Even if you aren’t near a facility that can offers sessions like this, any local Special Olympics or support group for parents of children with disabilities could easily gather for a few hours of social time while hole-punching and sorting through the paper trail.

The task is daunting at first, but once the initial hurdle has been cleared, the notebooks should be easy to maintain. I’m increasingly aware that Penny’s development depends upon medical, educational, therapeutic, and family support. Having a care notebook for her only increases my confidence that she will continue to thrive.

Friday, June 18, 2010

Louise joins the Circle of Honour

On Wed. night I received a Circle of Honour Award for advocacy for my work with BLOOM. The Circle of Honour is Holland Bloorview’s highest award for people who make the world a better place for kids with disabilities and their families. This award was very special to me because I was nominated by two parents. At the event they showed a video that included comments from a number of BLOOM readers. I wanted to share my speech with you.

I’m honoured and humbled to receive this award.

Katharine Harrison and Alison Bowen, the parents who nominated me, wrote about how the word advocate means: To summon a voice.

I’ve always felt that it was through my experience raising my son Ben that I found a voice I didn’t know I had.

It takes courage to parent a child with disabilities in a culture that still largely views disability as a tragedy.

And it’s because we’re determined, as parents, that the world see our kids the way we see them – that we become natural advocates.

But I think it’s fair to say that every person in this room is an advocate in the work they do to ensure that every child who walks through our doors leads a rich life.

There’s something truly unique about Bloorview – about the people who work here and our values – and I think BLOOM is a natural extension of that.

Our vision of possibility is radical in that it takes us beyond society’s limited definition of success to acknowledge the beauty and contribution of every child.

People here welcome diversity, they value different ways of doing things, they see opportunities that aren’t immediately apparent. Those qualities are remarkable and rare. We can’t underestimate their power.

I’d like to thank the leadership of the organization, our staff and our families for creating the kind of environment where BLOOM could thrive. I’d like to recognize Sara Purves, our designer extraordinaire. She’s created the kind of stunningly beautiful publication that our families deserve.

And I’d like to thank my Dad. He didn’t have a lot of experience with disability, but he taught me the value of every human life, and I think that’s why I feel so at home here.

Wednesday, June 16, 2010

Giving: 'The greatest feeling you'll ever have'

Bloorview has exciting news. This morning Canadian investment executive Bill Holland (in photo with Ben Hopper, 14) announced his family was donating $20 million to Bloorview Kids Rehab. The Holland family has already donated $6.2 million to the hospital. In recognition of their extraordinary giving, Bloorview is adding the Holland name to our name. Our new name is Holland Bloorview Kids Rehabilitation Hospital. See the profile on Bill below!

Giving: 'The greatest feeling you'll ever have

Who: Bill Holland, CEO of CI Financial Corp. Canadian investment executive, father, philanthropist.

What: A $20 million gift to Bloorview to recruit the world’s best pediatric rehab physicians, scientists and therapists; build a program that will see parents and youth work alongside clinicians to improve hospital care and safety, teach future healthcare professionals, and support families; and increase capacity for training post-doctoral research and developmental pediatric fellows. Bill’s gift kicks off the No Limits campaign by Bloorview Kids Foundation to raise $80 million for the hospital. In total, Bill has donated $26.2 million to Bloorview.

Why: “I think that Bloorview is an amazing institution. When I walked in there the first time I was blown away by the kids, which is the thing that immediately grabs you. But then seeing the volunteers and staff and the heart and soul they put into their day job, that’s remarkable. Childhood disability is a prevalent problem in our society and demand for services at Bloorview far outstrips supply. In order to build capacity, we need to attract world-class talent. The better we populate Bloorview with world-class professionals, the better the hospital becomes.”

‘When you make a contribution to a place like Bloorview and you get a letter a year later from the mother of a child who was helped in a very significant way there – that’s the greatest feeling you’ll ever have.’

Tuesday, June 15, 2010

Tying Your Own Shoes: An interview

I was contacted by Chelsea Jones of Regina, Sask. recently. She’s studying critical disabilities studies at York University in Toronto and is a journalist. She interviewed Tying Your Own Shoes filmmaker Shira Avni and three of the subjects of his documentary about artists with Down syndrome (see interview below, artists in photo above). “My interest in disabilities also comes from a family member – my brother has Down syndrome,” Chelsea says. “I got into journalism with intentions of telling stories about disability, which is why I study disabilities studies now. In particular, I’m studying the ways in which journalists understand disability. To be honest, I walked into Tying Your Own Shoes fully expecting to be hit with the standard disabilities stereotypes I often see in disability-based stories, and was downright shocked at how emancipatory the film was.” I’m sure you’ll enjoy her interview.

Tying Your Own Shoes: Interview with filmmaker, artists
By Chelsea Temple Jones

Filmmaker Shira Avni gives credit where it’s due.

The award-winning documentarian premiered her new animated film, Tying Your Own Shoes (2009), in Toronto this year before it began touring internationally. Avni can explain the film, but she leaves it up to the main characters – four artists with Down syndrome – to tell their stories. Avni may have brought them together, but she says they made the film.

Following the film’s first screening, Avni and the artists take to the stage in panel position. When the applause won’t stop, Avni steps aside and gestures to the artists – Matthew Brotherwood, Daninah Cummins, Katherine Newton, and Petra Tolley. Then it is their turn to front audience questions.

They explain the film. It’s a profoundly intimate, emotional look at their lives through a combination of interviews, artwork, and still-frame animation. It challenges the philosophical boundaries between personal experience and disability using humour and wondrous storytelling.

As they spoke, ever so carefully, these characters personally debunked any number of stereotypes about intellectual disability and Down syndrome in particular – just as they do on screen – so I wanted to learn more about how it all came together.

Here are excerpts from my interviews with Avni and three of the artists in her film.

Jones: How did you become involved in this film?

Newton: I was talked into it by Shira…she interested me in art.

Brotherwood: Shira approached me about this a few years ago because I’ve done arts, since elementary, and into animation…and my dad says, going to help do other animation…I do clay making, painting, sculpting.

Jones: Where did this idea come from?

Avni: I can’t really take credit for the idea. Matthew’s father asked me whether I had ever thought of making a film where people with Down syndrome were a driving creative force behind the film.

Jones: Who played the lead role in developing the stories?

Avni: I had a set of basic interview questions that we had to toss because we would go off on tangents, and what they were saying was usually much more interesting than the interview questions that I had set up. So all of the content is their content.

Jones: What kind of content did you produce to make this film come together?

I like colouring, it’s very colourful…it’s a grid and there’s designs in it.

Cummins: I made drawing and painting.

Brotherwood: The art is like painting and colouring and going step by step, if you wanted to follow it you have to watch this animation, you have to read bits, and then you have to picture it, with the animation we did.

Jones: What is the best part of the film?

Newton: I like it and thought it was creative…[the best part was] everything, and I liked the paint.

Brotherwood: The best part is the interviewing because when they’re asking questions about the animation.

Jones: What were some of the challenges you faced with the interviews?

Avni: People needed to be comfortable with the interview process and verbal enough to engage with the interview process, which did cut off a percentage of the Down syndrome community: People who didn’t go through the education system, or maybe grew up in institutions or grew up in an era where it was impossible to educate your child who has down syndrome, so they [were] possibly less verbal. Even though their intelligence and possibilities are more or less the same as people who are more verbal in a younger generation.

Jones: What were some of the other obstacles in making this type of film?

Avni: We had long conversations about sex and love and there’s actually a lot in there that they asked me not to put in to the film because they felt it was too personal, and they didn’t really want to share it with their families or their workers…it’s just bad practice to take advantage of a population that’s vulnerable in the name of truth or of the importance of the film itself.

Jones: And when you watch the film, which part of the film stood out to you the most?

Cummins: My favourite movie, also my cat, Puff, and my apartment.

Brotherwood: I think Daninah’s, the cat thing…It’s about Daninah’s living situation, she used to have a pet, and now she says she has no more cats and no more pets, and they’re not allowed.

Jones: So that’s a reference to her cat named Puff, whose story is told as a way of giving some insight into Daninah’s life, right?

Brotherwood: Yes.

Jones: Why do you think that part is important?

Cummins: I feel happy, I feel proud of myself.

Brotherwood: Because I’m watching it, I’m thinking it, when it happens to my cat they die. That’s what happened to the cats I used to have.

Jones: What is your perception of the disability-based film scene?

Avni: There are really good films out there, but I think the problem is distribution. Often people think, ‘Oh, whose going to want to see that? That’s such a niche market.’

Jones: And what do you think this film means for people with Down syndrome?

Cummins: Down syndrome means I am special. I mean, makes me special.

Brotherwood: It means you have disabilities and if you have your own heart to show and give your art to people to show you guys for the animation we did.

Avni: I guess the message fundamentally is to keep an open mind. And what you see is not always what you think. Someone with special needs may be much brighter than you think and much more capable than you think and much more articulate and expressive and talented and capable than our initial assumptions. It’s just to take the time to listen to them and get to know them more than we have been.

Monday, June 14, 2010

When you wish upon a star

Last night Ben and I lay looking up into a black sky filled with stars. Our bodies sunk into a yellow bean-bag mat and he draped an arm across me. As we took in the mystery and majesty of the immense sky, our breathing slowed.

"If you see a shooting star, you can make a wish," said the recreation therapist leading us through our simulated journey into space in the Snoezelen room.

"I wish I could walk," said a young boy.

"I wish my mom and dad would get back together," said another boy.

"I wish," Ben signed, and then he made the sign for "home."

Wednesday, June 9, 2010

'Your shoes drive me crazy'

‘Your shoes drive me crazy’
By Ellen Painter Dollar

Shoes drive me crazy. To be more specific, if you are a woman who wears what most women wear, your shoes drive me crazy—your flip-flops and Crocs, your Dansko clogs and Merrell mocs, your ballet flats and high-heeled boots and wedge espadrilles.

What have you and your shoes done to offend me? Nothing intentional, I assure you. I’m bothered by the very fact of your shoes and the simple relationship you appear to have with them. You see a pair of cute shoes on sale and if they fit, you decide, “Why not? I’ll get them.” You need a certain kind of shoe—pumps to match the dress you’re wearing to a wedding, sandals you can slip on to chase the kids around all summer—and you know you’ll find what you want. It might take some comparison shopping, some trying on of different sizes, but eventually, you’ll find something that fits your criteria.

My relationship with shoes is more complicated. On the positive side, my shoe options have expanded since my childhood. Then I was limited to hard-soled Oxfords (essentially, boys’ dress shoes) because I wore long metal leg braces, and the bottom of the braces had to hook into special holes drilled into the heels. I vividly remember the two pairs of shoes my mom bought for me in middle school (white canvas Nikes with a blue swoosh, and brown Docksiders) when I switched to plastic braces that could slip right into my shoes. I still get a little giddy in shoe stores, intoxicated by the idea that I am no longer limited to brown clodhoppers. I can buy any shoes I want.

Except I can’t really. While I no longer wear leg braces, I will always have the bone disorder that made them necessary. So I have a long list of qualities I need in shoes. Rubber soles to offer good traction and accommodate the 1 ¼-inch lift I have added to the left shoe to partially compensate for a leg-length discrepancy. Laces or straps to keep the shoe firmly on my foot (most slip-ons are out of the question). Flat soles and broad heels to prevent my ankles from twisting. A closed front to cover my knobby toes. And on top of all that, they have to feel good, or at least good enough. My feet always hurt, every day, no matter what shoes I wear. So I look for shoes that hurt the least.

These requirements mean I have to buy high-quality (i.e., expensive) shoes. And then I have to shell out $100 per pair to have the lift added to my left shoe. And then, after all that, my feet still hurt at the end of the day.

Do you see why regular sightings of Old Navy flip-flops can make me a little crazy? (And don’t even get me started on Crocs…)

Of course, it’s not really about the shoes. It’s about the sense of alienation that crystallizes when I recognize how little most women have to ponder their shoe choices vs. how much I do. I do not navigate the world wrapped up in self-pity or bitter awareness of my disability. But occasionally, something catches me up short, brings into focus that yes, I am different. Our family is different (one of my three children has the same bone disorder I do). Our differences can be a gift as well as a burden. But they are definitely differences.

I recall a beautiful summer day nine years ago when my toddler daughter (the one with the bone disorder) and I were at a friend’s house with our play group. For everyone else, being outdoors on such a day was the epitome of carefree summer living. For me and my daughter—who could not ride a plastic tricycle safely, could not yet walk, and could break a bone as the result of a minor accident—playing in a hilly, toy-strewn backyard with six other toddlers was dangerous, frustrating, and anxiety-producing. Eventually, we just went home, and I felt sadder that day than I had since the day my daughter was diagnosed at six weeks old.

As a family living with this disability, we live with different assumptions than other families. We operate under different rules. We see danger where others see the daily givens of middle-class suburban life—a great pair of shoes on sale, kids running amok in the backyard on a summer day.

For those of you also living with disabilities, what crystallizes your differences or your sense of separation from others? And how do you respond to those feelings when they come up?
Ellen Painter Dollar writes about family and motherhood, faith, and living with a bone disorder which she shares with her oldest daughter. She is working on a book (to be published by Westminster John Knox in 2011) about the ethics and theology of assisted reproduction and genetic screening, drawing on her experience as someone with a genetic disorder who chose to have biological children with a significant chance of inheriting the disorder. Ellen blogs at Choices that Matter and The Five Dollars.

Monday, June 7, 2010

Ben's update

Today was a special day. Ben was visited by his class at Bloorview. As you can see, his cast is off. It came off on Thursday, but was not quite the happy occasion we expected. First, Ben decided he didn't want the cast to come off. His intuition was good, because when his leg was finally freed it began to spasm, which is common when a limb has been immobilized for so long. He had a painful weekend with both legs "jumping" around, but last night he had his first good night's sleep in weeks. This morning he insisted on getting right into his chair and wanted to know when he could walk. Later he did stand with his physiotherapist, though he wouldn't put his left foot down flat. For the next few days he'll be practising standing, and hopefully then taking a few steps. The surgeon said it will be a slow process. I never knew how many hurdles there were to jump post-surgery. I'm proud of him.

Friday, June 4, 2010

More than enough

A while back when I sat on a TVO panel about raising kids with special needs, the host asked me: “How does a parent know that they’re doing enough? That they’ve done everything they can?”

At the time I thought this was a bit of an odd question. I can’t imagine the parent of a typical child being asked: “Are you doing enough?”

And implicit in the question is that if we “special-needs” parents only do enough – get our child the right therapy at the right intensity at the right time – our child will “overcome” their disability.

My answer was that most of the parents I met were superhuman in their attempts to get their child the best therapies and support them in every way possible.

I was reminded of that last weekend. One of the parents on the unit told me that she spent $30,000 to get her son private speech therapy. To pay for each one-hour session she had to work one-and-a-half days as a cleaner.

I noticed a Dad who was always here on the weekend. Weekends can be long and slow and a bit sad, I find, at the hospital. There aren’t as many activities going on. Many staff aren’t here and some inpatients go home. It’s lonely. No one wants to be in hospital, but especially not on a weekend, when you expect to be out doing things.

On Sunday as I was about to go home with my other kids I bumped into this dad. He mentioned that he was leaving too. But he was about to walk out to Bayview and begin a 90-minute TTC route home.

I was exhausted and could barely cope with driving 10 minutes home and I couldn’t fathom how this man was about to begin his journey, which would certainly be unpredictable on a Sunday night.

Now I knew what it entailed for this dad to spend the weekends sitting with his son. He didn’t want his son to be alone.

I think most parents of kids with disabilities do more than enough.