Discharge day

Here's Ben and I waiting for his last physio session as an inpatient. Instead of complaining through every exercise, he laughed hysterically, giddy at the thought he was going home.

I'm taking a much-needed break for the next two weeks, but our amazing BLOOM designer Sara will be here to moderate your comments.

In September I'm speaking on a panel about how social media can be used to see through the eyes of the patient/family. Today I read that the Mayo Clinic had just opened up its very own Center for Social Media. Here, its medical director talks about how he believes social media will revolutionize health care by providing a new platform for patient voices and better connecting patients and professionals.

What do you think?

I believe there are many ways we could be using the BLOOM blog to better empower parents raising kids with special needs. In addition to having experts answer your questions, we could pose practical questions to our parent and professional readers and generate, through comments, your collective wisdom on a topic.

Ideas?

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'Rare' is the loneliest number

I'm honoured to share this post from Catherine Calhoun of Saint Francisville, Louisiana. Catherine volunteer manages the RARE blog for the Children's Rare Disease Network. Thank you for sharing Catherine and welcome!

'Rare' is the loneliest number

By Catherine Calhoun
The three taboos related to my son’s rare syndrome (McCune-Albright syndrome/fibrous dysplasia) are pain in kids, deformity (especially facial deformity), and early death. As a group of parents who meet at family conferences and online, we rarely speak of these things.

When I went looking for help for my son’s bone pain – it’s a crippling curl-up into a ball knees to chest and cry at night sort of pain – I found no support. I found doctors who doubted that he could be in such pain. I found doctors who said ask someone else about this pain. I found doctors who said we don’t know why he has this pain – some kids have pain and some don’t. I felt alone and a little like I was calling out for Ferris Bueller.

We’ve now worked out that his endocrinologist will order the medicine he needs for IV infusion and my son sits in a primarily adult infusion clinic monopolizing the television with his Scooby Doo videos. We don’t know what this medicine will do to my son over time. We guess it’s better than getting a second grader hooked on narcotics.

As the medicine drips into his arm, I try not to think of toxicities. At the end of the day, I have to go with “treat pain” and push worries for the future aside. I can’t really let my son stay curled up in a ball unable to move for pain indefinitely, can I? And I’m looking at a lifetime of pain for him. How can I even get out of bed in the morning? I sometimes wonder this as I drag myself out of bed in the morning. But then the medicine kicks in for him over a period of two weeks, and I pretend that maybe the pain will never come back.

During our medical travels, we met a young adult who has MAS/FD like my son. He is delightful and more than kind to my son – wheelchair racing him and listening to his chatter. As we sit down for dinner, my son says: “Mom, look at his legs, they are crooked (And makes a crooked line “C” with his finger for a visual in case I didn’t understand).” My best reply: “Sometimes that happens.”

I want to know “when does it happen, why does it happen, will it happen to my son too?” These bones can turn to something liquid-like, rarely but still. These bones can move all about the face causing marked asymmetry, as well as vision loss and hearing loss. My son is a living grenade – as his condition progresses “what will happen?”

No one really knows the prevalence with a best guess of one in 100,000 to one in one million. It has a vast spectrum – very mild (you might not even know you have it) to lethal. I have not found another boy in the world my son’s age with bones as bad as my son’s bones – but there is probably someone somewhere in the world, probably.

Five families lost someone to MAS/FD last year. When I think of how one of these young adults was not found for some time, I can hardly breathe. The parents had died years before and this adult had no siblings. Noticing the absence, the loss, was left to co-workers. I know that complex medical issues and disability make building social connections harder, make marriage and kids and all of that more unlikely. I hate that for my son, hate it – the feeling of the deck stacked so far against him at the start.

I just returned from a family conference where for the first time in six or more conferences, we spoke honestly about the pain and the craniofacial deformities. I appreciated when one young adult acknowledged that people stare, every single day. And while I don’t yet believe the “everything happens for a reason” spin, I'm grateful that when I say that “I feel like I have brought this sweet lamb of a child, my son, into this world to suffer” an old-timer dad says: “No, you’re here to make a difference.” God, I hope so.

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A recipe for success

I'm posting this story from the June print issue of BLOOM in honour of Empowering People with Disabilities, an event July 24 on BloggersUnite. Check out the other blog posts that have been written for the event. Please let me know of other innovative businesses run by people with disabilities!

A recipe for success

Lemon & Allspice Cookery is a Toronto catering business operated by a partnership of 15 people with intellectual disabilities. BLOOM interviewed Jeannette Campbell, executive director of the Common Ground Co-operative, which provides support to Lemon & Allspice, to learn more about this novel partnership.

BLOOM: How did Lemon and Allspice get started?

Jeannette Campbell: It was started by Carolyn Lemon and her daughter Cathy (in photo above). Cathy has a developmental disability and was involved in all sorts of programs for meaningful activity and employment, but nothing was solid enough or engaging enough. She really wanted to bake and sell her cookies. The family had a big house with apartments and her mom gave her the top floor apartment to use the kitchen. Cathy started selling her cookies to family friends, community groups and local churches. A couple of Cathy’s friends wanted to get involved and her parents were interested, so they decided to create a business. But instead of a standard business, they created a partnership where the business owners are all adults with disabilities. Community Living Toronto offered the use of a commercial kitchen in one of their group homes.

BLOOM: What are the products it sells?

Jeannette Campbell: They started out with lemon and allspice cookies, chocolate chip cookies and lemon squares and then added sandwiches, salads and vegetable and cheese trays. As the parents realized they needed a bit of support they pooled their resources and got a job coach to help with baking and selling the cookies and training the partners to use the TTC, because they do all of their own deliveries. In addition to churches, community groups and friends, they were soon selling to businesses and government agencies.

BLOOM: How does the business work today?

Jeannette Campbell: It has 15 partners, three apprentices, two job coaches and a co-ordinator. It runs five—sometimes six—days a week and has moved from a mom’s kitchen to a commercial kitchen. They’re up around $90,000 to $100,000 in sales each year and have spawned other businesses. The co-ordinator is a professional chef who not only works in the kitchen but also works with the job coaches at the coffee sheds and makes sure everything is up to standard.

BLOOM: Tell us about the spin-off businesses.

Jeannette Campbell: Lemon and Allspice was the original and then came Common Ground. It’s a co-operative that was created to provide an umbrella of support to Lemon and Allspice and three other businesses. We’re contracted to provide administrative support, pre-vocational training, job coaching, raise funds and oversee the businesses. Sixty-five per cent of our funding comes through the provincial government and the rest—about $200,000—we raise through our charity. We're funded through the Ministry of Community and Social Services to run a training program for youth aged 18 to 21 who can then apprentice in one of the businesses for three months. The other businesses are called the Coffee Sheds— there’s one in Surrey Place, one at the University of Toronto, and one in Jewish Vocational Services. They’re snack bars that sell the baked goods and sandwiches by Lemon and Allspice, as well as fair trade coffee and other foods. The businesses are social-purpose enterprises. Not only do they have a financial bottom line, but they have a social bottom line. We’re addressing underemployment for people with intellectual disabilities and debunking myths.

BLOOM: Who are Lemon and Allspice's customers?

Jeannette Campbell: They include major banks and law firms, non-profit groups, government ministries and churches.

BLOOM: How does a person become a partner?

Jeannette Campbell: After a three-month apprenticeship, the partners vote to bring them in or not. We as staff don't make any decisions—the partners are in control of that.

BLOOM: What do the partners get paid?

Jeannette Campbell: The partners take a draw every month based on 33 per cent of revenues before the cost of goods sold. Depending on the number of hours worked, they can earn up to $300 each month, which is discretionary income they use to supplement their disability support.

BLOOM: What kind of impact has the business had on partners?

Jeannette Campbell: There’s something about the empowerment that happens when somebody realizes it’s not just that they work here, it’s theirs, it’s that ownership and responsibility that gives them a sense of pride. You see a lot of skills development, particularly in the coffee sheds where there’s a lot of interaction with the public. You’ll hear a partner say: “My family wasn't sure why I wanted to do this because they said I couldn't understand money. Now I can break a $20, I can break a $50. I love making change. I like working on the cash register. I couldn't look someone in the eye. I had a really hard time talking to strangers. Now I’m a self-advocate and do presentations across the province on our business partnership model.”

BLOOM: What advice would you give parents of young children with intellectual disabilities?

Jeannette Campbell: Start cultivating the interests and abilities in your child the same way that you would with anyone. Find the gift that your child has and cultivate it. If you can get a group of people together with a similar vision, that’s where the strength comes in. We've got about 200 members in our co-op and only 40 per cent are parents. The others are community members interested in making inclusion work. They include professors and people who run their own coffee shops. Our expertise lies within the membership of the co-op.

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This and that

This is a grainy pic because Ben is a speed demon on his rehab bike and doesn't slow down -- even for photographers.

I was contacted by Catherine Calhoun who volunteer manages the RARE blog for the Children's Rare Disease Network. This is a fabulous resource with lots of firsthand stories from parents.

Parents helping kids and kids helping parents, a meet in the middle was an interesting post about how we can lose sight of what's most important when therapy dominates our lives.

Many of you are already familiar with Enjoying the small things, a blog by Florida mom and photographer Kelle Hampton. Kelle shares life with her two young daughters through stunning photography and words. She just received a national media award for her work at the National Down Syndrome Congress in Orlando.

This is a delightful interview of a mother by her 12-year-old son with Asperger's on Story Corps.

We welcome guest blogs so please send me your ideas (lkinross@hollandbloorview.ca)!

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Just what the doctor ordered!

His dream arrived in that box to the right, which was much bigger than it looks. It was packed with eight exquisitely-wrapped gift bags -- one for every member of our family and two for the workers who will go to overnight camp with Ben in August.

Ben got a frog stuffie to take to camp, the Sunshine Foundation t-shirt he's holding up and the cap he's wearing.

And in a large envelope was his dream: two full weeks of Camp Kennebec, the money orders for the workers who will accompany him and reference to the prepaid all-terrain wheelchair they've rented on Ben's behalf. Last year the one we borrowed didn't fit him properly and was challenging to push over the camp's hilly terrain.

The Sunshine Foundation fulfilled Ben's wish to return to Camp Kennebec. I don't know what the wheelchair rental costs, but the other costs are more than $5,000. We could never have sent Ben to this camp for two weeks. We could barely send him for one last year.

Sunshine thought of absolutely everything Ben could possibly need for his stay and gave it to us as a wonderful gift.

When you parent a child with disabilities, you often feel like you're facing walls: people's attitudes; arbitrary rules that exclude your child, whether from programs or funding; exorbitant costs.

I remember how defeated I felt when I sat down with the Sunshine application in front of me. "What is the point?" I asked my husband. I've spent hours filling out forms in the past that have gotten us nowhere. I honestly didn't believe that Ben would qualify for a dream. Surely something would bump him. But I filled out the forms and then Ben told me the things to list about why he wanted to go back to camp and we typed it on the computer: flying down the zip line; frogs; friends; catching his first fish.

We received a letter from Sunshine saying they would try to fulfill Ben's wish but because of the backlog of wishes they have in their system, they couldn't guarantee it for this year.

So when I received an e-mail saying it was a go, it was a surprise of epic proportions. The weight of having to finance the camp (you know how you tell yourself 'my child MUST have this experience, I will make it happen, no matter what!,' but then it gets down to the practicalities of 'how are you going to raise this money?!') rolled off my shoulders. It felt like we'd won the lottery. And more than that, it felt like someone believed my son deserved this dream -- was worthy of it. And instead of erecting barriers to our efforts to give Ben a rich life, this organization was going to take them all away.

What or who is the Sunshine Foundation? They are located in London, Ont. and fulfill the dreams of Canadian children with severe disabilities and life-threatening conditions. They've fulfilled the dreams of 6,500 children so far, and have a current backlog of 150 wishes. The foundation was started by a police officer in memory of his son who died as a result of muscular dystrophy. What a legacy! He wanted children like his son to be able to live their dreams.

The foundation has one office in London and operates with the help of chapters around the country run by volunteers.

We know how challenging it is to raise charitable dollars in our current economic climate. I can't help wondering how Ben's gift came to be. Perhaps Ben is going to camp because of the generous spirit of hundreds of individual donors from across the country.

I salute those donors, the Sunshine Foundation and its volunteers and I am immensely grateful.

Ben will be discharged as an inpatient July 30 and goes to camp August 1. I can't think of better medicine.

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Potty training: It's not a race

Amy Julia Becker, mom to William (left) and Penny (right) is a writer and recent graduate of 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." Here she writes about a developmental stage that stresses many parents, but which can be especially sensitive for parents of children with disabilities: potty training. Thanks for sharing Amy Julia!

Potty training: It's not a race
By Amy Julia Becker

I was all set to write a victorious essay about how we had crossed the final potty-training hurdle. Seven days without an accident, even at night. No more Pull-ups, no more rubber underpants, no more carseat cushions in the washing machine, no more worries about our daughter sitting on the couch without a towel underneath her. Two years after we first started working on it, I thought we were done.

And then, Penny visited my grandmother and when she got up, there was a wet spot on the chair. And then, when we were outside this afternoon she looked at me, eyes wide: “Tinkle accident Mom!”

So we aren’t quite there after all. We’ve made some good progress, and I’m celebrating just the same.

Sometimes I’m asked, “What’s the hardest thing about having a child with Down syndrome?” And I reply, at least half serious, “Potty training.” Sure, the trips to the hospital for her heart procedure and hearing tests and the Emergency Room visits were more immediately stressful. And the question of social stigma when it comes to having a disability looms large as Penny gets older. IEP’s, routine checkups with a host of specialists, routine questions or comments that betray ignorance about who Penny is—all of those are tough. But when it comes to a daily struggle, potty training has been the hardest of all.

I was ambitious when we started. Penny was 2½, and I was convinced that with enough willpower on my part, she could learn to use the potty. I had heard plenty of moms with typically developing children say, “I just chose a week in the summer and put them in underpants, and by the end of the week we were done.” I knew it might take a little longer, but I figured Penny really wasn’t that different from all the other kids.

Then came the moment. Penny was sitting on the wooden stairs in my parent’s house, and she stood up with a puddle underneath her. I almost burst into tears. And I heard the disappointment in my voice as I said, “Oh, Penny!” It was then that I knew that this goal was for me, not for her. We put the underwear away for nearly a year.

The funny thing was, even in her Pull-up, Penny would wander into our room in the middle of the night and say, “I need to go potty.” And she would. Nearly every night. Last June, we were on a long car trip, and she said, “I need to go potty.” She held it for twenty minutes as we looked for a place to exit the highway. These moments helped me to realize that in this area, she really is different from other kids. If she’s on a playground, with her body and brain focused upon climbing a ladder or hanging from a bar, she doesn’t “hear” the signals that she needs to go. If she’s sitting still or sound asleep—if the rest of her body is quiet—then she does. And then there’s her low muscle tone, which makes it harder to hold it in even if she knows she needs to. Not to mention the impulsivity that makes her prefer to keep playing, even with wet underwear. I started to understand Penny’s hurdles, and I started to respect her more with every try.

So we bought training pants—super absorbent white underwear with strong elastic to prevent further leaking. And we did a lot, a lot, of laundry. We stopped paying attention if she had an accident, and started praising her effusively when she succeeded in going on the potty. For a time, we used M&M’s as a reward. Eventually, we got into a rhythm. Every two to two-and-a-half hours, we take a trip to the potty. She’s become more and more compliant the more successful she’s been. And once it was clear that a day without accidents was a distinct possibility—once it was clear that she could succeed—we introduced “star” days. After her first star day, we all got ice cream. Then, two in a row, and more chocolate yumminess dripped down her white shirt. Then, three in a row. Four. We don’t even talk about star days anymore. But we are working on helping Penny tell us before she needs to go, and we may use stars again once she starts to be able to do so.

Potty training has taken a long time. A really long time. It has set us apart from other families. And it has forced me to listen to Penny. In her own way, she asked me to slow down, to get to know her. She asked me to continue to learn how to love her—not for who I thought I wanted her to be, but, acknowledging her needs and her abilities, for who she is. Potty training has been one of the hardest aspects to our life with a child with Down syndrome. It’s also been one of the best.

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Eric sees the beauty of technology

Eric Wan (above right) has lived a life few can imagine. At 18 he was a healthy high-school student who excelled at computers and violin. Three days after a routine measles vaccination he was rushed to hospital unable to move and struggling to breathe. For four months he laid in intensive care, where he was diagnosed with transverse myelitis, an inflammation of the spinal cord. He was paralyzed from the shoulders down and needed a ventilator to breathe. The only possible cause doctors could point to was the measles shot. He was transferred to a long-term care hospital for two years of rehab.

Last month Eric graduated with a computer-engineering degree from the University of Toronto after winning an award for his thesis. Since 2005 he's been developing technologies for children with disabilities as part of his training at Holland Bloorview. He starts graduate school on scholarship in the fall. “He’s among the very best software developers I have ever encountered,” says Tom Chau, Canada Research Chair in pediatric rehab engineering and Eric’s thesis advisor (in photo left). I was delighted that Eric agreed to talk with me.

BLOOM: What was your life like before you became paralyzed?

Eric Wan: I lived a very regular life, just like any other teenager. I loved computers and spent a lot of time practising violin and playing in my school’s symphony orchestra.

BLOOM: What was most challenging about acquiring significant disabilities as a teenager?

Eric Wan: There was no challenge initially because I didn’t think of myself as being paralyzed for life. I thought I would get better, or there would be some kind of cure. For the four months I was lying in bed in the ICU, my main thought was of boredom. It wasn’t until I got to West Park for two years of long-term rehab that I realized the paralysis would be for life. In fact, when I first arrived, the staff thought I might stay in their facility for life.

BLOOM: What happened when you realized you wouldn’t get your mobility back?

Eric Wan: I had periods of depression and anger that weren’t easy to overcome. The main reason I was depressed was because I couldn’t do anything at all. I was completely immobilized physically. It was a matter of taking very little steps, one day at a time. At first I couldn’t even get out of bed I was so sick. Then my goal was just to get out of bed and sit in the wheelchair for an hour.

BLOOM: How did you get through those dark times?

Eric Wan: It was a struggle between depression and the motivation to go forward. Something that helped was when the therapist at West Park gave me different types of assistive devices. I remember the first time I was able to activate a button to turn on the phone. I was so happy. To anyone who’s healthy, picking up a phone is nothing at all, but for someone who’s paralyzed and unable to do anything, turning on the phone was a huge step forward.

BLOOM: How would you describe your quality of life now?

Eric Wan: I feel I’ve come a long way since I was paralyzed, and I’m quite happy about that. But there’s still a long way to go in terms of my academic pursuits and other aspects of my life.

BLOOM: Such as?

Eric Wan: Right now I live in subsidized housing in a unit that’s adapted for people with disabilities and the building has attendant care. I hope in the future to purchase my own place – maybe a condo – and hire my own attendants.

BLOOM: When you can’t use your hands, how do you control your wheelchair and use a computer?

Eric Wan: I use a sip and puff (straw) system of four commands to control the directions of my wheelchair: a hard sip, a soft sip, a hard puff, and a soft puff. I use a head-tracking device to control the mouse cursor on my computer (Eric has a tiny reflective sticker on his glasses. When he moves his head, the computer translates it into mouse movements and clicks.) I also need a way to type so I use an onscreen keyboard.

BLOOM: But you've just got one reflective sticker. Is that what you use to type each individual letter?

Eric Wan: Yup. It would be like comparing 10-finger typing to one-finger typing. It's a lot slower. Word-prediction helps speed it up.

BLOOM: How are you able to get all of your studies done?

Eric Wan: It takes a lot of planning – and the use of technology.

BLOOM: I know one of the main projects you've worked on in the Bloorview Research Institute is the virtual instrument. This software allows children who can’t manipulate conventional instruments to play music. Why is it important?

Eric Wan: I feel playing music is important to every child because it helps with the creative side of thinking. To be able to introduce music to a child who's not able to do it at all, and open up that possibility, is very exciting.

BLOOM: How has quadriplegia changed you as a person?

Eric Wan: I never thought I would be having this experience. Being in a wheelchair is quite a different way of seeing things. While it creates physical blind spots, it also gives me insight into the importance of assistive technology. The former causes me to run over countless number of toes. The latter enables me to appreciate the beauty of every piece of technology around me, to an extent not many other people do.

BLOOM: Would you have become a rehab engineer if you hadn’t become paralyzed?

Eric Wan: Not at all. In the earlier years of my undergrad studies I tried to think of ways where I could design devices to improve my own life. That got me into the mode of thinking about designing assistive technology for other people. Tom is a large part of the reason I got interested in research in this area. He helped me discover that I could apply my skills to improving the quality of life for children with disabilities. Tom’s research enabled children to say their first words, to access the computer for the first time, and to experience the joy of video-game playing like other children. It reminded me of the first time I was set up with an adaptive switch, months after I was paralyzed. I was ecstatic about being able to turn on a phone. The math here is very simple: increasing one’s ability from 90 per cent to 100 per cent gives 111 per cent times the joy, whereas increasing from 0 per cent to 10 per cent gives infinite times the joy (100/90=111% refers to the ratio of improvement, hence the joy 10/0=infinity, because anything divided by zero is infinity). This is the amount of excitement I experienced being given the technology to do things I otherwise have no capability of doing. It’s the type of excitement I hope to deliver through my career as an engineer.

BLOOM: What qualities have enabled you to cope with your situation?

Eric Wan: Patience is a big factor. Before becoming paralyzed I wasn't as patient as I am now.

BLOOM: What are some of the barriers to people with disabilities leading rich lives?

Eric Wan: I think a major barrier is moving from being in rehabilitation to integrating back into the community. This is a huge step. When you're living in a facility the thought of living independently, where you'll be alone most of the time, is very scary. It's not that scary once you've experienced it, and now I love it. I was part of the Gage program where I was trained to live independently. A lot of things needed to be put in place before I could live on my own: I had to be able to move on my own in my power wheelchair; I needed attendants who were trained with ventilator care; and I needed environmental control units to access the phone or control the computer and lights.

BLOOM: In terms of barriers, what about people's attitudes?

Eric Wan: I don't put much focus on that. I go to school and once in a while I see students staring at me. Maybe they're curious, or maybe they feel I shouldn't be there. I don't put much thought into it because it won't change anything. I focus on where I want to go and my purpose in being there.

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