Wanted: Your stories

Last year Columbia University launched the first graduate program in Narrative Medicine, noting that "our modern medical system has all but forgotten the critical importance of stories: stories of suffering, stories of healing, stories of the relationships that tie patients to their clinicians."

In an earlier Journal of the American Medical Association article, Dr. Rita Charon, founder of the new program, describes Narrative Medicine like this: "Along with scientific ability, physicians need the ability to listen to the narratives of the patient, grasp and honour their meanings, and be moved to act on the patient's behalf."

The new masters program -- targeted to doctors, nurses, social workers, therapists and other health professionals -- includes study of literature, reflective writing and interpretation of illness narratives with the goal of better listening to, and understanding, patient stories.

I think "disability" could be substituted for the word "illness."

Here's where you come in.

If you're a parent:

1. Describe the best experience you had with a doctor, nurse, therapist or other health professional working with your child.

2. What did the professional do (or not do) to make this a positive, empowering experience?

3. What could other professionals learn from this to improve care?

If you're a professional:

1. Describe the best experience you had with the parent of a child you were working with.

2. What did the parent do (or not do) that supported you in providing the best care?

3. What could other parents learn from this?

I can't wait to hear your answers and would love to share some in the December print issue of BLOOM. Let us know where you're writing from. Thanks!

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Camp week 1

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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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