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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Small world!

Over the last month we've had visitors from 606 cities in 57 countries.

We'd love to know more about parenting or working with children with disabilities in your neck of the woods.

Please hit comments, then post a comment to tell us where you're from!

(e.g., I'm Louise and I live in Toronto, Canada.)

Thanks!

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Of course I want another 'like him'

Today we have a guest blog from Brittany Ross of Winnipeg, Manitoba. She writes about her life with her adorable son Skyler (above) at Taking it Day by Day. Thank you Brittany!

Of course I want another 'like him'

By Brittany Ross

When I was younger I used to dream of having the perfect family. There would be me, a loving husband, and a bunch of rugrats to chase after. My dreams started to come true in my early 20s, when my loving husband and I got pregnant. However we didn’t expect what was about to come and how others would react to our decision to have more children. Ever since the birth of our first child other people have become judgmental and accusative with questions like: “Are you sure you want to have more kids? What if they’re like Skyler?” My answer to these rude questions is always the same: “Well I am hoping for a girl this time around but if we have another boy we will be just as happy and blessed.”

Why would people ask this question at all? It’s simple: my son has special needs. He was born with a rare condition that prevents him from producing most of the hormones our bodies need to keep us alive, and along with it comes underdeveloped optic nerves. The condition he has is called Septo-Optic Dysplasia. What this means in a nutshell is that our son is legally blind and requires daily medicines to live. He’s also at risk of going into adrenal failure, seizures and death if we don’t monitor his cortisol levels carefully. Now while logically this explains why people wonder why I’d want more children, it doesn’t explain why they think they have the right to ask such questions.

Is it fair to my child to imply that there’s no reason for his parents to want another child like him? I suppose it’s important to point out that the people who ask this question have never had a child with special needs themselves. So I guess they just don’t get it. I still don’t think this excuses their behaviour. My son happens to be the happiest, sweetest, funniest, and definitely cutest toddler I know! Of course I want another child like him -- I should be so lucky.

Don’t get me wrong. I’m not going to gloss over the facts and say that it’s not hard being a parent to a child with special needs. There are appointments after appointments, there are nurse practitioners, pediatricians, endocrinologists, ophthalmologists, cardiologists, neurologists, physical therapists, occupational therapists, speech and language pathologists, just to start. There are tons of things to learn about like assistive technology, audio books, Braille, tactile illustrations, orientation & mobility with and without a cane, how to administer meds orally, how to administer meds with a syringe, where to inject the meds, when to call the ER. Not to mention all the developmental and social aspects!

And yet, we do want another child. Even if there is a possibility that our next child will have the same special needs as Skyler. We already have all the supports in place, we are mastering the learning curve for his disabilities, we’re on top of his med schedule and all of his therapies. If the next child has the same issues, well that just makes it easier for us since it’s something we’re already familiar with. While it is hard at times, it’s also overwhelmingly rewarding. Our son is a wonderful ray of sunshine on a dreary day. He lights up our lives and those of everyone he meets. So to answer those questions, yes I hope that our next child is just like our first!

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Custody or services?

Stacey Berton of Kitchener, Ont. is a single parent raising Wesley, 9 (above), who has autism and symptoms of bipolar disorder. This past spring, Wesley's aggression increased to the point that he was hurting himself and others. "The school couldn't manage it and I was covered in bruises and there was no help," Stacey says. Twice in June, Wesley was hospitalized in the child psychiatric ward at Grand River Hospital. Stacey looked for a specialized day program that would meet his needs but none existed. She was told her only alternative was to sign over temporary custody of Wesley to Child and Family Services so that he could be fast-tracked into Kidslink, a residential program for children with mental-health issues. A week after being admitted, Stacey learned Wesley would have to be moved because Kidslink couldn’t maintain the one-to-one support he needed.
BLOOM: Tell us about Wesley.

Stacey Berton: Wesley is verbal and bright and eccentric. He knows every make and model and colour of vehicles. He loves riding bikes and colouring and has a great sense of humour. He also has terrible anxiety and doesn’t under social concepts. He’s afraid of many things: that his Mom might be taken, or our van might be taken, or our home might be taken.

BLOOM: When was Wesley diagnosed and what kind of intervention has he had?

Stacey Berton: He was diagnosed with autism at the age of three. I quickly discovered that early intervention was necessary, but the therapies were inaccessible due to their high cost and limited government funding. Like many parents, I gave up work to try to become adept at what would help my son. I worked with Wesley and I drove him from one therapy to another. Our family fell apart with the financial strain. I moved with Wesley from a rural area to Kitchener where I thought we would have more access to support. But I’m living in poverty and still navigating the red tape.

BLOOM: What precipitated the current crisis you are in with Wesley?

Stacey Berton: He was very functional at school and plans were being made for him to be fully integrated in a regular classroom without an aid next year. Then in the spring, he became very aggressive. He had rages and mood swings and acted out violently. I love my son fiercely but I couldn’t stop him. He’s very strong and I started to have bruises on my body. Then he began hitting other kids and teachers and the strategies we had in place at school weren’t working. On two occasions in June I had to take him to the child psychiatric ward at the hospital. I met with Developmental Access Services to try to find a day program where Wesley’s needs could be met and he could come home at night to me and sleep in his own bed. I was told that these programs don’t exist. The only option to get him into a residential placement – because of the wait lists – was to sign over temporary custody to Child and Family Services.

BLOOM: How did you feel about signing over temporary custody?

Stacey Berton: It’s the most painful thing I’ve ever had to do. I did it because I believed that it would put Wesley in the hands of organizations, alongside me, and we would all have a responsibility to getting Wesley the care he needs. They found him a place at Kidslink, which is a residential program for kids with mental-health issues. The child psychiatrist at the hospital supported this placement. Wesley had gone there once a month for respite days so was familiar with it. They have a water park, a place to ride bikes, a gymnasium and a classroom program with a small teacher-student ratio.

BLOOM: What has happened since Wesley went to Kidslink two weeks ago?

Stacey Berton: I brought him to stay with his father for the weekend and both his father and I noticed a decrease in aggression and he was asking to go back to Kidslink. Then I had a call from Kidslink to let me know that that he was getting worse and they were planning to move him to a group home for children with autism. They had been discussing this with Child and Family Services the week before but hadn’t notified me.

BLOOM: Why do they feel that Wesley needs to be moved?

Stacey Berton: They say they don’t have the funds to continue to provide Wesley with a one-on-one worker. It’s not an issue of Wesley’s aggression, it’s money. I was told that in other cases they’ve had parents pay for the one-on-one worker. And they say they can’t meet his needs based on autism, but they put him in knowing what his needs were. Moving a child to another place would be hard on any child but Wesley is very fragile and anxious. The group homes don’t have any more resources or access to funding than Kidslink, but they just want to move him along. Bouncing Wesley from one place to another will be very traumatic for him.

BLOOM: I know you’ve started a Facebook group called Please Help Wesley. What do you hope to achieve through this group?

Stacey Berton: My goal is to advocate for a day program where we can have our children’s needs met and they can go home to their families at night. It needs to be a year-round program and to offer therapies and schooling onsite. I’ve already made contact with four families who have situations very similar to ours. We’re hoping to meet and find ways to fundraise for this kind of program.

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Is big better?

The other day Ben pointed at me and signed: "When did you grow up?"

"A long time ago," I said. He asked D'Arcy the same thing.

Then he gestured to himself to ask: "When will I grow up?"

"You are growing up, right now!" I said.

Later I thought about one of the signs he used and realized that it was "tall" – bent hand rising up into the air – not "grow" – one hand pushes up through the other, as a flower shooting up through soil. So he was asking: "When did you get tall? When will I get tall?"

It's been a long time since I spoke to Ben about his size and the fact that his syndrome makes him short and small.

When he was young, the way we value height and anything "big" grated on me.

I got tired of hearing people gush "What a big boy!" – even though they were often referring to a child's age, health or ability as opposed to size.

As I thought more about it, "What a big boy" seemed to be a strange code for "your baby is healthy" in Western culture.

After all, before most mothers hold their children for the first time, they’re weighed and measured like meat, and many new parents include these measurements in the birth announcement: Joe arrived weighing in at 8 lbs and 21 inches.

While your baby is still largely a blob, progress is measured by regular visits to the doctor who records miniscule changes in weight, height and head circumference. New mothers compare their child’s numbers with normed growth charts and with their friends, looking for where their infant 'stands' in percentiles.

In a world obsessed with individual achievement, babyhood is a competitive business. Books charting typical growth and development for infants are bestsellers. Before your child can outdo others in smarts, athletics or social aplomb, he or she can shine in size: big is better.

The value our culture places on size and height carries over to adulthood, where, particularly for men, it’s better to be big (but not fat) and tall. “There's plenty of evidence to suggest that height – particularly in men – does trigger a certain set of very positive, unconscious associations,” notes Malcolm Gladwell in Blink, the bestseller about how we make snap judgments.

So I will have to have a talk with Ben about why he doesn't grow like other people and will always be little. "Small is beautiful" I used to say when he was young. I'd come up with ways in which being tiny was an advantage: like being able to sneak into a really tight spot, or being a race jockey. Given Ben's hip problems, the less weight he carries the better. But what teenager thinks like that in a culture like ours?

On Lianne's blog My Life with Gabriel, I read part of a quote from Desmond Tutu on ubuntu, an African expression about what makes us human. It's a refreshing shift from the competitive individualism of North American culture:

My humanity is caught up, is inextricably bound up, with yours...We belong in a bundle of life.

We say, “A person is a person through other persons.” It is not, “I think therefore I am.” It says rather: “I am human because I belong. I participate, I share.” A person with ubuntu is open and available to others, affirming of others, does not feel threatened that others are able and good, for he or she has a proper self assurance that comes from knowing that he or she belongs in a greater whole and is diminished when others are humiliated or diminished, when others are tortured or oppressed, or treated as if they were less than who they are (page 31, No Future Without Forgiveness)

Here are some interesting (unrelated) links I came across:

Disabled Discounts is run by a couple that began researching discounts available to people with disabilities when one of them was diagnosed with multiple sclerosis. Their listings – for an annual fee of $25 – may be of interest to our U.S. readers. You can also follow their blog at http://blog.disableddiscounts.com/

Maternity Rolls is a new book by a Canadian mother who uses a wheelchair: "I realized that I looked like a living contradiction – disabled and pregnant – and that contradiction was pushing others to reconsider and confront their ideas of whom and what I should be."

Wheelchair wheelies is a story about an 18-year-old with spina bifida who does extreme wheelchair stunts, including back flips, at a skate park.

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Enter filmpossible!

Ever wish the world could see your child through your eyes?

Here’s a challenge for our Canadian readers – and their kids.

Enter filmpossible – Holland Bloorview’s online video contest.

Create a video under two minutes that brings visibility to disability. Tell a story. Dispel myths. Celebrate what our kids bring to our lives. Winners will be determined by a panel of celebrity judges and online public voting. First prize is $5,000.

I can’t wait to see your entries! Louise

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