The zookeeper

I haven't asked Ben what he wants 'to be' when he grows up for years. But a story in the new BLOOM magazine woke me up. It's an interview with author Amy Baskin about the dearth of possibilities for young adults with developmental disabilities. When they age out of high school at 21, they're not qualified to do anything, nor are they entitled to any ongoing education or daily activity. There are limited traditional options, like sheltered workshops where participants make 40 cents per hour. Or they can sit at home and watch TV all day. But if you want your adult child to have a meaningful life -- something that speaks to their passions and dreams -- you have to create it for them.

So after all these years, I asked Ben again: "Where would you like to work when you're older? Where would you like to have a job?"

"The zoo," he signed.

"What would you do there?"

"Feed the animals."

My son fancies himself a zookeeper, throwing silvery fish and corn husks to the polar bears.

I fell into a terrible funk this afternoon as we walked around the pavilions at the Metro Toronto Zoo, spread over miles, recognizing that this dream is not practical for a child who can only hobble along for a few minutes at a time. He sat in his wheelchair with his face close to the glass, watching the zookeeper on her elevated platform lob lunch to the lumbering bears with dirty coats. "When can I feed them?" he signed.

I asked the zookeeper if visitors were ever allowed to throw the food. No, she said. The animals receive limited portions that couldn't be divvied up among the hundreds of children who would line up.

Ben stretched out his hand to shake hers.

"How do you become a zookeeper?" I asked.

"They look for people with a biology background," she said.

I wasn't sure if "they" were universities recruiting people into their zoology programs or zoos themselves.

I googled "How to become a zookeeper" and found this interesting piece by someone from the Jacksonville Zoo. They have about 100 applications for every spot, it says. Interestingly, the minimum requirement is a high-school degree (which Ben won't get). The HR person says the best way to get your foot in the door is to volunteer at a zoo and get as much experience as possible with a variety of animals.

I searched our Toronto Zoo for volunteer opportunities but the website states that volunteers "have no direct contact with animals or plants (I did touch some enormous fuzzy leaves today on a tree in an exhibit that mimics the Indonesian rainforest!)."

This weekend, one of my daughters was asked to look in on a hamster who's going solo at a neighbour's house. "That's the perfect job for Ben!" I told my husband. Ben doesn't have the strength to walk a dog or lift a big bag of pet food, but hamster food can't be heavy. However, when I asked if Ben could feed the hamster, my daughter was nonplussed.

I'll have to put the word out that Ben is looking for odd jobs.

I wrote an article years ago about a single dad who was pounding the pavement looking for job opportunities for his teenage son who had Down syndrome. I didn't realize at the time that I would eventually wear his shoes.

I'm in a parenting marathon that has only just begun. But I already feel burnt out.

How do you pace yourself and keep your spirits up?

Happy New Year!

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iPad app recommendations

I'd love to hear your suggestions for iPad educational apps.

Anything related to reading, phonics, writing stories or basic math.

Thanks!

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Our link

I was upstairs in the hospital and saw a shirt decorated by a child. It said: “We are all connected by wires. Don’t disable mine.”

It made me think of the link I have to all of you, spread out across the world like Christmas cards on a string, people I never would have known if it weren’t for the blogosphere.

And it got me thinking about how much strength I’ve taken from our online community. When Ben had his surgeries in April, Elizabeth lit a candle for him in Los Angeles. I’d come home at night and find messages from BLOOM readers near and far who were rallying for him and us. Tekeal from Switzerland wrote: “Have been thinking of you these past days... particularly when walking along the river and feeling its healing power and watching the foliage burst with new life – sending it your way.” Stacey from Kitchener, Ont. mailed me copies of Signing Time videos she thought Ben would enjoy. Ellen from Connecticut sent tips on surviving body casts and managing pain. Matt from Toronto shared his experience with surgery and rehab. Many of you prayed for Ben and virtually ‘held’ our hands – too many to name.

Being able to effortlessly tap into your intimate understanding of disability and your support and kindness is a gift that I treasure. Happy holidays to you all and many blessings in 2011!

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Acceptance = book's message

Arlene has plans, Big, Big Plans. She's going to be the youngest ever student government officer in Greenwood Elementary history. She'll be the biggest thing to hit little Rhode Island since the invention of coffee milk. Sure, she wears purple leg braces and has a weird-sounding disease called Charcot-Marie-Tooth, but that won't stop her. Onward she marches, bending rules and blasting stereotypes in an effort to win no matter what.

So reads the back cover of Arlene on the Scene, a new chapter book for children aged six to 12 written by Carol Liu, a social worker and attorney, with her friend Marybeth Caldarone, a speech therapist. Marybeth and her 9-year-old daughter Grace have the same nerve disorder as the main character. Proceeds from the book will be donated to support people living with Charcot-Marie-Tooth disease. I interviewed Marybeth about the book and its message.

BLOOM: How did Arlene on the Scene come to be?

Marybeth Caldarone: The author Carol grew up in Rhode Island and I grew up in New York. I came to Rhode Island for college and Carol was one of my roommates. We hit it off and became really close. Carol was a great listener and loved to look at things from different perspectives. We used to talk about how people didn’t understand what it’s like to live with a disability and how we should write a book one day. Over the years we kept in touch and Carol would keep track of things I said. After she had her kids and was at home, Carol began to write and sent the first couple of chapters to me. I couldn’t believe it. This was a book I would pick up in the store and not think twice. We’d go back and forth where I would critique what she’d written: “Do you think this is really how Arlene felt?” or “Would she say that or do that?”

BLOOM: What is the book about?

Marybeth Caldarone: For younger kids, the characters are so likable and funny things happen. It’s just an enjoyable story about school and the different antics the kids get up to. Older kids can really get into the theme of the book, which is about acceptance. Arlene is a person with a disability. She starts out wondering “Are people going to accept me?” Over time she realizes that she herself is not accepting everyone as much as she’d like to be accepted. The main character – Arlene – is loosely based on my daughter Grace and the mom is loosely based on me.

BLOOM: What do you hope to achieve through the book?

Marybeth Caldarone: Initially we wanted to raise as much money as we could for Charcot-Marie-Tooth research. We'd like to raise awareness of CMT so we don't get a blank stare when we mention it. But as it progressed, Carol began to see the book as a tool for helping people see that it’s not all about finding a cure. It’s also about accepting people for who they are, whether they have a disability or not.

BLOOM: Why is it important that children’s books have characters with disabilities?

Marybeth Caldarone: Disability is a natural thing. It’s all around us and it’s something everybody should be exposed to. Some of the kids in the school I work at are reading the book and they’ll come to me to ask whether things that happened in the book have happened to my daughter. It’s opened up a lot of discussion.

BLOOM: What does your daughter Grace think about the book?

Marybeth Caldarone: At first I think she didn’t know what to make of it. Now she sees how positively the book is being received. A lot of the kids in her school have read it and it makes her feel special and important because she knows about the whole purpose of the book. While the book was being written it was a great tool for her to explore how she feels about things. She would read excerpts that Carol had written and say: “No, that would never happen” or “I would never do that.” It gave me a lot of insight into how she feels about what’s going on. Grace reads parts of the book now and laughs because she can relate to it.

Read more about Arlene on the Scene at the authors' website. Carol and Marybeth are already working on a second book in the series called Arlene Goes Green.

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When there isn't a happy ending

I’ve been sad recently. It started when I began to look at how to revise Ben’s communication system on his iPod. I got to the section called “Friends” and realized it was a struggle to think of a single kid I could legitimately put in there. You know, a friend that Ben sees on a regular basis. That led me to recall the day almost 17 years ago when Ben was three days old and we met geneticists who told us he had a good chance of having a syndrome. As we tried to hang on to our hope, my husband asked: “Will he still be able to run and jump and play with his friends?” Ben has never had the strength to run or jump, but it’s his lack of friends that makes me sad. I know he loves the idea of friends. One of my cherished memories of him is as a young child waiting by the window, signing “friends?” on the day of his birthday party. In those days, there were kids who came.

A student in his class this year did give him a Christmas present – a video – and I made a note that we should call him and have him over. He came to Ben’s birthday party last year.

But as Ben heads into his 17th year, it strikes me that he’s one of the kids who won’t have a happy ending (in the traditional sense). You know how people like to hear stories about children who defy the odds, who ‘overcome’ their disabilities?

Somehow it’s not good enough to simply be an ordinary person with a disability. It’s as though the value of a person with a disability hinges on them doing something considered exceptional in the typical world. “He may have a disability, but look what he can do!” I’m sure that most of you can recall well-meaning people telling you stories of kids like this when your child was first diagnosed. At the end of the day, it all comes down to what people can ‘do,’ doesn’t it? Not what they can ‘be’ in the lives of others, but what they can ‘do’ to acquire status in the world.

My son won’t be able to ‘do’ any of those things. I’m not even sure that he wants to, if he could. He’s quite happy in himself, as he is.

Perhaps it’s because he’s nearing the time that other kids his age would go off to university and launch their independent lives that I grieve for him. Or perhaps it’s because I clearly recognize that there will be no 'breakthrough' in his development. That no matter how much time I spend working on his iPod or reading with him or buying him workbooks or making him secret messages he can decode on the computer to improve his keyboarding skills, there isn’t going to be a leap in his progress. Or perhaps I feel inadequate to create the meaningful life for him that rests on the shoulders of parents like me.

I mentioned this to one of our BLOOM bloggers – Amy Julia Becker – and she responded by saying: “I love hearing about the ‘amazing’ people with Down syndrome, but I love even more when I hear about the normal people with Down syndrome. The ones who just live their lives as everyday people, with challenges and delights. If only we as a culture could recognize their contributions instead of ranking them.”

I read a moving column in the New York Times Motherlode blog by Susan Senator, author of “The Autism Mom’s Survival Guide.” It’s called This Little Light of Mine. It describes an epiphany she had about her son Nat’s obsessive worry with diminishing daylight in winter – especially when the streetlights hadn’t adjusted. “For so long I made the mistake of believing, like so many people, that someone with autism could not connect with other people,” she writes. “That because Nat did not show how he felt about me in all the familiar social ways, that he did not care about me. But the streelights panic eventually showed me I was wrong. Nat watched me like a hawk during those times – he who couldn‘t sustain eye contact – hungering for me to say something, do something about the lights. It dawned on me that this could only mean one thing:…Perhaps it was actually his profound attachment to me that made him believe I was all-powerful, responsible for the lights and everything else around them. Perhaps it meant that Nat – though profoundly autistic – was deeply connected to me, after all.”

This change in how she viewed her son – “my openheartedness,” she says – led Nat to relax and be more easily reassured. “This shift, this growth for both of us has changed everything – because he can manage his feelings. I feel a new confidence, as if it’s okay for me to hope for things...” The author imagines her son eagerly waking for a day at his day program, where he may carry meals to elderly people. And while her son may not look to see the smiles of the recipients, she now believes he will feel them, building on the attachment he’s learned is there in others.

It’s a beautiful story. And I thought – maybe I’ll get there one day. Where I feel hope for Ben’s future, his adult life.

But then I couldn't help wondering whether Senator’s son wants to go to a day program? And if he wants to carry meals to the elderly?

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A cameo appearance at the school assembly

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'You are the expert on your child'

I met a remarkable woman six years ago. Her name was Ann Hovey (centre) and she was living at Holland Bloorview while her daughter Cailyn, 3 (in photo left, now 9), underwent inpatient rehab following removal of a brain tumour. And if that wasn't demanding enough, Ann, a single parent, had her baby Lauryn (right, now 6) with her. A few months ago I was delighted to see Ann again at Holland Bloorview. She was speaking to staff about the critical role of parents on the health-care team. Ann is the focus of our Trailblazer column in the December issue of BLOOM. She has much to teach us about courage. Thank you Ann! Louise

'You are the expert on your child'

Ann Hovey’s daughter Cailyn was diagnosed with a brain-stem tumour just before her third birthday in 2004 and shortly after her sister Lauryn was born. Six weeks after her diagnosis, Cailyn was given 10 months to live. Ann, a single parent, has seen Cailyn through four brain surgeries since then – including one in New York – two years of weekly chemotherapy, two eye surgeries and almost a thousand hours of therapy. Six years later, Cailyn is still alive and her tumour has been stable for two years. Ann, an engineer who coached business teams to improve quality, has become an advocate for parents of children with serious illnesses and disabilities. She speaks at conferences and is writing a handbook on how health-care workers can partner with parents to ensure the best outcomes. “Professionals are the gatekeepers. They’re the ones who can make it possible – or not – for parents to step up and be the strong advocates we desire to be.”

BLOOM: Why is the parent voice critical to the health-care team?

Ann Hovey: No one knows your child better than you do in terms of behaviour, typical reactions and personality. So in terms of facilitating how well things work through an intervention, or getting a child to do therapy, or understanding why a child is behaving a certain way, parents have a huge impact. For complex cases, the parent is the only one who is at all the appointments and can provide the most complete information, which leads to a more accurate diagnosis or approach to intervention. Cailyn has worked with as many as 15 specialists and I’m the only one who sees them all.

BLOOM: What are challenges to parents being heard?

Ann Hovey: One of the biggest challenges is the historical relationship we have with medical doctors. We have a history of deferring to doctors because usually we’re in a place of vulnerability when we approach them. Our child is ill and we can’t provide the answer. We don’t go in saying: “I’m expert 1 and you’re expert 2 and together we’ll resolve this.” We go in saying “I need your help.” They hold the key and we feel we hold nothing. When you’re in the business world, you learn very quickly that teams are a way of life and that to solve a problem or improve a process you’re going to be working with others. But for the most part, medical specialists don’t approach work as a group. So when a parent says “I’m your partner, you need to listen to me” they’re thinking “What?”

BLOOM: What can professionals do to enable parents to be vital partners?

Ann Hovey: Listening opens the door for a partnership to begin. When a professional sits with you, and is not anxious to leave the room and is actively listening to your thoughts, concerns or suggestions, she is saying “What you have to say adds value.” It’s important. On the other hand, when you deal with a professional who has his hand on the door handle saying “Anything else? Anything else?” you get flustered and anxious, and you can’t think or communicate as clearly. As a parent on this journey, we know we can’t do things that will save our child’s life, or help them see again, or whatever it is, and that leads to a sense of helplessness and a loss of confidence. Professionals can teach us what we need to do or what we can do to help our children. They can support our choices for our children when they’re reasonable. They can build our confidence by saying: “Hey, that’s a great observation” or “You’re doing a great job.” When parents feel they’re doing good things they also feel more in control and are more likely to contribute positively. And underlying all of this is a structure of hope. When you don’t squash a parent’s natural hope, then the rest becomes possible. If I have no hope, I won’t push through the care plans and the therapy, because I have no hope it will make a difference.

BLOOM: What qualities enable a parent to be an effective partner?

Ann Hovey: Some professionals think our ability to contribute as a partner depends on our education and personality. In my experience working with organizational teams to achieve successful outcomes, I found that the people who contributed greatest weren’t necessarily the most educated or easiest to get along with. But they had these qualities: they understood their responsibility to step up to the challenge; they believed they had something to contribute; they showed respect for team members; and they believed in the goals of the team. Health-care providers can help us strengthen each of these qualities.

BLOOM: How did you maintain a hopeful attitude when Cailyn was given such a dire prognosis?

Ann Hovey: I have a competitive personality and when I heard there was no point to surgery because it would just ruin the last 10 months of her life I said: “I can’t sign up for that!” But there were a number of practical things I did. I created a list of all of the things I could do to help my child: ‘I can hold her, I can tell her I love her, I can make sure she does her therapy.’ I got Cailyn to visualize her tumour as a cookie that we were going to eat. It was painfully obvious the things I couldn’t do for her, so I needed to focus on what I could do. I also made a list of all of the things I was thankful for. It’s too easy to get caught up in the heavy stuff as opposed to something you’re thankful for. I believe that a certain amount of energy is created when you think positively, and energy is also created when you think negatively. We don’t know the impact of negative energy, but we do know that if you hang around with someone who’s very positive, you tend to feel better.

BLOOM: What other strategies for remaining hopeful would you recommend?

Ann Hovey: In addition to writing a list of what you can do, and what your blessings are, focus on getting through one day successfully. Ask yourself: ‘What can I do to make sure today is successful? What has to happen so I can get to the end of the day thinking it was a good day?’ Maybe it was just that I was going to take Cailyn out for a walk. The truth is that no one knows the future and generally speaking when you’re on this kind of journey you won’t get a hugely positive sense of the future if you talk to medical professionals. I think they feel they need to be conservative. So focus just on one day. Another important thing is to ask professionals to prioritize the most critical support or therapeutic strategies. I remember having 25 different exercises I could do with Cailyn and I could barely get through two. So ask: ‘What are the three most important exercises based on my child’s biggest current weakness?’ That gives us parents a sense of control because we know we’re doing what’s most important.

BLOOM: Do you have other suggestions for how parents can best work with health professionals?

Ann Hovey: For optimum results, we need to make lists of our questions, thoughts and concerns, to ensure they’re covered. When our questions aren’t answered, we feel helpless. So bring a list and if the doctor is in a hurry, say: “I appreciate your time and I understand you’re busy, but I have a list of questions I will go through as quickly as possible.” Make sure you record the observations and recommendations of each specialist because you have to bring them forward to other health-care professionals. Parents also need to trust their instincts. My approach is to listen openly, seek answers, access other opinions, but when the rubber hits the road, I go with my gut. When a doctor says “Do this,” I know whether or not I feel good about it. If I don’t, then it’s not the right thing to do. Seek out professionals who are prepared to listen and view your observations as valid. Believe that your contribution is critical because you are the most committed team member and you’re the expert on your child.

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'I've learned not to take anything for granted'

The December issue of BLOOM goes to print this week and includes a series of stories about parents raising more than one child with a disability. I wanted to share with you this interview with Dana Florence of Toronto. Dana's triplets were born three-and-a-half months premature. After months in hospital, where they survived complications, Brody, Taylor and Cole finally came home. At 10 months old they were diagnosed with cerebral palsy. Dana inspires me! Louise

BLOOM: Parents experience a gamut of emotions when their child is diagnosed with a disability. How did you feel when your three children were diagnosed with the same disability?

Dana Florence: I was a teacher, so I knew what they were supposed to be doing in terms of milestones and my children were delayed. The red flags were there, but I don’t think anything can prepare you for receiving the diagnosis. It was a triple for us – triple the heartache. Because your vision of what will be for your babies changes – or you think it might change – in that moment, and your whole life flashes before you. I cried a lot and my husband was devastated. But when you go home after the diagnosis and you look at your children – they’re your children. What are you going to do? I couldn’t continue to cry all the time. I needed to move forward and do what’s best for them. I didn’t want to let this diagnosis define who they are going to be.

BLOOM: How did you move forward?

Dana Florence: I’m a doer, and I had to figure out how we can deal with this. That’s when we started looking into clinical trials in the states. I became very fascinated with stem-cell therapy and a clinical trial at Duke University with cord blood. We saved our kids’ cord blood at birth, but because they were so premature they didn’t have enough to meet the study’s protocol. I spoke to doctors and I felt like ‘warrior mom’ trying to find something more than typical early intervention to help my kids. We have SickKids and Holland Bloorview – some of the best children’s hospital in the world – in our backyard. In speaking to people, I learned that the issue holding back research was money. That’s when the lightbulb went off and we developed Three to Be, an organization that raises funds for research into children’s neurological disorders.

BLOOM: What did you get from your involvement with Three to Be?

Dana Florence: Three to Be was a huge game-changer for me. It allowed me to channel my energy towards something positive and made me feel like I had some control over an uncontrollable situation. I have such hope that the funds we raise will support research that could potentially make a huge difference for my kids and other kids who face similar struggles.

BLOOM: What tips would you give other parents raising multiple children with special needs?

Dana Florence: A huge thing is to learn how to accept help and be okay with it. We have two caregivers with me because my kids need one-on-one. I feel so blessed because we have such a supportive family. Every Friday my family and my mom-in-law come for dinner and everyone helps out. I’ve learned that I can’t do this myself and whenever I try to be too much of a super woman, it’s not good for me or the kids because I burn out. The way I justify help is that it’s a good thing for everybody. The second thing I’ve learned is that we really are stronger than we think we are. If you’d told me a couple of years ago that this would happen, I wouldn’t have thought we could survive emotionally. But you just do. And third, and most importantly, I’ve learned not to take anything for granted. Life can really throw you curve balls and it’s how you deal with them that defines who you are. We celebrate every little thing that is positive now. Ours is a different life than what I imagined, but I love my life. I love my family and my kids more than anything in the world and they’ve taught me more than I could have imagined. They’ve helped me reach a potential in myself that I didn’t think was possible.

BLOOM: What do your children enjoy and how do they interact with each other?

Dana Florence: All three have different personalities but they really love each other. They like to be silly together. If one is upset, the other will get upset. They’re very in tune with each other. They love swimming, family time, playing with toys and, of course, Barney.

Learn more about research projects on stem-cell and robotic therapy at Three to Be.

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Everyday happenings

Last night Ben was afraid there was a monster under the bed. He wanted me to check. He’s had a lot of bad dreams. “Night dream” he signed last night, for 'nightmare.' We’ve been watching the Harry Potter series of movies so perhaps his imagination is full of three-headed dogs and ghosts who inhabit paintings.

Ben wants to play the guitar. I think a regular guitar would be much too heavy, but perhaps a ukelele?

His school sent home a list of vocabulary related to three books. I was able to find one of them at Chapter’s. I went to the online ASL video dictionary and learned the signs for the key words. We read the book and practised the signs. He doesn’t have the dexterity to do the precise signs, but he tries. Then I got him to pick five words out of the list and write a sentence about them. I’m hoping to start building his sign and written vocabulary this way.

When Ben was younger I got his siblings to attend sign-language summer camp with him. For a few years they were interested in sign, then they fell away from it; it annoyed them that they weren’t allowed to “talk” at camp. I hear about other families where everyone signs, but that isn't our family. I realize I have to start signing on a consistent basis with Ben.

Yesterday we had a Christmas party at his grandmother’s house. He signed to one of his older cousins that he wanted to play hide-and-seek. I guess he remembers playing that game years ago. He did participate in Twister (my body doesn’t twist anymore so I stayed upstairs).

Ben is going to be Santa in a Christmas presentation at school. I have to get him a red shirt.

He begrudgingly made a tuna melt this weekend from the recipes he brought home from school. At least now I know he likes processed cheese slices (a good way to get some protein into him).

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Rachel Coleman: 'Live big and live loud'

Rachel Coleman (photo right) is the founder of Signing Time, a company that produces sign-language videos for children, and mom to daughters Laura, Leah and Lucy. Leah, 14 (top of photo), was diagnosed with a profound hearing loss at age one, and Lucy, 10 (centre), was diagnosed with spina bifida in utero and cerebral palsy at nine months. I interviewed Rachel about parenting two children with disabilities and the success of her Signing Time videos, which sell in over 20 countries. Thank you Rachel, for sharing your wisdom with us! Louise

BLOOM: How did you feel when you learned your children had disabilities?

Rachel Coleman: Well, with Leah, it was shocking to find out that for her first year she had been deaf and we hadn’t even known it. There was a lot of guilt with that. I was a stay-at-home mom and I was with her all the time and I felt really guilty for not recognizing it earlier. I remember the day the ENT called to tell us she had a severe to profound loss. I was in the car with my husband Aaron and Leah was in her car seat. Aaron and I just started crying. My whole family is musical. My grandmother was one of the King sisters in the King Family television show. I was a singer/songwriter. Music is what we do. We have Christmas so we can get together and sing. I couldn’t think of anything worse: that she would never hear a note I sang or a story I read her. We went home and lay on our bed and cried.

The funny thing was that our little toddler was standing at the end of the bed looking at us, with a concerned expression: “Why are my parents so distraught?” We realized in that moment that there was nothing wrong with her. We were upset because we had just found out the news that she was deaf – but she was just fine with being deaf. We took Leah’s perspective and the viewpoint that she’d always been deaf. We decided that we didn’t have to fix it we just needed to educate ourselves and figure out what to do. We thought since  her ears don’t work but her eyes and hands work fine, we should start signing.

Two years later, we went for an 18-week ultrasound and were told our second baby had spina bifida. One in a thousand children have spina bifida and one in a thousand are deaf and the odds of getting two of those children is one in a million. I went home from the appointment and cried. I was so mad. We’d done so well with Leah, and not letting her disability get the best of us, and then to be hit with spina bifida seemed so unfair. We were sitting on the bed bawling and I sat up and said “This is exactly how I felt when we found out Leah was deaf!” Then I remembered the realization we had about Leah’s deafness. “What if, like Leah, Lucy just has spina bifida, that’s the way she’s coming, and we can educate ourselves and do our best to give her the most amazing life we can?”

I think parents get stuck on ‘why does this happen?’ We could sit here and cry and say ‘why us?” but it wouldn’t make any difference. There is no why. Besides, I wouldn’t be any more empowered in my life or as a parent if I knew why. It’s just nature, it’s not personal. I didn’t do anything to deserve it. It’s random. Focus on what actually makes a difference everyday for you and your children. That means finding the resources that are available to you and talking to parents who are already years further down the path.

BLOOM: How do you meet the different needs of two children with disabilities?

Rachel Coleman: Their needs are so different. Lucy has had numerous surgeries and she has gear: a manual wheelchair and power wheelchair, a walker and lots of seating equipment. She’s finally big enough that we have to think about getting an accessible van. You don’t have to do those kinds of things when your child is deaf. With Lucy there are appointments and resources and things that cost money and it’s a lot of stuff to manage every year. With Leah there were hearing aids and she got a cochlear implant at age seven, which included intensive speech therapy, but Leah’s disability doesn’t require as many appointments. Both girls need services at school. There is a lot to track and manage. But I guess that’s just how it is when two of your children have disabilities. Sure, we changed our life to fit all of this in, but I don’t even think it has to do with the disabilities as much as just having children. Even when you get married you make accommodations for another human being. You do the same when you have children. Though there was that moment of surprise: I never thought this would happen to me. I didn’t think I’d have one kid with a disability, let alone two. The biggest shocker was when I realized that this could happen to anybody, including me.

We deal well with the girls’ needs as a family, but once we leave the house we have to deal with everyone’s opinions about us. We’re signing and we have a wheelchair so people stare at us. In the beginning there was that protective instinct – I wanted to be like everyone else. I thought: Do I have to explain everything about my children to everyone? I’ve seen a lot of parents end up with a chip on their shoulder. Over time, I decided that maybe it was my job to educate. If someone has the guts to ask me about my family, then I can have the kindness to answer.

When Lucy was a baby, I was holding her while in line at a restaurant and she was arching and screaming and I was on my cell phone. A boy came up behind me and said: “Hey lady, your baby has a big head.” Lucy has hydrocephalus. I thought: Didn’t your parents teach you any manners? I’m sure the red was coming up my chest and face. I ignored him. Then he said it again: “Hey lady, your baby has a big head.” I didn’t say anything. So he taps me on the shoulder and repeats it a third time. I turned around and before I could say anything, he says: “I bet she’s going to be really smart.”

In that moment I saw how much meaning I added to his words. I thought he was mocking Lucy because she had an adult-sized head, when he was just trying to compliment her because he thought she was going to be a genius. I learned that we bring our own fears and inadequacies to what other people are saying to us. Sometimes we can’t even hear what they’re saying because our thoughts are so coloured by sadness or loss or mourning. I realized that I may think people are judging me and my kids and their disabilities, but in reality I’m judging them 100 times more before they even open their mouths. In that moment with the boy, my heart softened. I dropped my guard and let that chip fall off my shoulder.

BLOOM: Your blog is called Strong Enough to Be. I often feel like I’m not strong enough to manage the many issues my son has, or to get him the life he deserves. What does this title mean to you?

Rachel Coleman: I’m not super mom. There are more times than I like to admit that I’ve curled up in the fetal position in tears saying: “I can’t do this!” In the beginning when people would say ‘You only get what you’re strong enough to handle’ I would get so mad. I wanted to yell: That’s a lie! There are days and times and months when I feel like I can’t handle it.

Strong Enough to Be came from a moment two years ago. We were in Mexico with my siblings and their families. All the kids were going swimming with dolphins. Lucy has a lot of anxiety and she was opting out of a lot of the adventures. I saw a brochure for a glass-bottom boat tour. It turned out it was a submarine with windows. We would get on a speed boat and go into the middle of the ocean and transfer onto a submarine. I showed it to Lucy and she wanted to go. I went to the desk to book it. “I have a child with a wheelchair,” I told the man. He said they couldn’t put the wheelchair on the bus to the dock where we got the speed boat, so I would have to carry Lucy all day. I still signed up, and that night I couldn’t sleep. I had nightmare after nightmare that I was carrying Lucy across a desert or over mountains. Carrying Lucy is like carrying a four-foot stiff doll who weighs 50 pounds and arches away from you. In the dream I was crying and I didn’t want her to see that I couldn’t do it. I wanted so badly to keep my promise to her.

I woke up and I was horrified. What have I gotten myself into? I’m not going to let her see how scared I am that I might fail her, I thought. I’m her legs. She can only go where I take her in this world that isn’t accessible, that isn’t always paved with ramps and elevators and buttons to open doors. I can be her legs. I can do this for her. We got to the submarine and I stepped off the speed boat in the middle of the ocean. Holding my 50-pound child I walked down the windy stairway and I almost started to cry, thinking: “I can’t believe I did it.” We saw sea turtles, beautiful coral and amazing fish. That was the moment when I saw how strong I can be because of Lucy. The whole world tells her ‘no’ – they look at her wheelchair and say ‘Sorry, no, you’re asking a lot here, we have to make accommodations we’re not used to.’ What if I’m her ‘yes?’ What if Lucy can count on her mom being a ‘yes’ in a world of ‘nos?’ There are mountains I’ve climbed with her on my back and I don’t know if I could have done it without her there. She can hear my breathing become labored and she’ll whisper: “I love you so much, thank you.” To have a little 10-year-old angel on your back – it’s almost like there is no possibility of failure. It pushes me to do things I would never even dream of doing.

Strong Enough to Be is not about always being strong enough to handle things, and doing it with a smile and grace. It’s about looking at the amazing gifts that our children are in our lives and acknowledging the experiences we would never know and never have if we didn’t have children with disabilities.

BLOOM: How did Signing Time come to be?

Rachel Coleman: Leah was four and she was the only deaf kid in the community. She was becoming more isolated and invited to fewer parties. One day I was interpreting for her on the soccer field and the coach asked a boy to be Leah’s partner. “I don’t want to be with Leah because she can’t talk and she can’t understand me,” he said. My first instinct was to be a little mad, but I thought: ‘That’s what’s going on with these kids! Is there something I could do to make a difference for this boy?’ If nothing else, that is the most important thing for parents to keep in their side pocket, in those moments of frustration: Ask ‘Is there something I can do that would make a difference?’ I called up the boy’s preschool and asked if I could come in and do a sign language story time and I went twice. The next week, on the soccer field this same little boy came running up to Leah and signed: ‘friend, play, ball.” It only took three signs, and he wasn’t afraid of my kid anymore. ‘That’s something I can work with,’ I thought.

A couple of weeks later my sister Emilie called and asked me if I wanted to make a video for children about music. Because I made the assumption that Leah could never access or understand music, I had quit music. “No way,” I said, “Not music.” And then I suggested we do a video to teach sign language. Emilie had started signing with her son Alex from the time he was a baby. We came up with a list of 18 signs that Leah and Alex had used from the start. I wasn’t in the show and there weren’t supposed to be any songs. We filmed it, having Alex and Leah teach the signs. But they were three and four years old and they were not very good teachers. Emilie said “We need someone to demonstrate the signs, and it’s you.” I begrudgingly ended up in the show, and almost more begrudgingly, began writing songs and signing them in the show. To date I’ve written and performed over 100 songs for Signing Time.

BLOOM: Was it hard to find a market for the signing videos?

Rachel Coleman: Not at all. We weren’t setting out to create a business, we were happy being stay-at-home moms. I thought if we were to make 100 videos and give them to people who know and love Leah, that would change her world. But Emilie had other ideas. She bought http://www.signingtime.com/ and put our one VHS up there for $12.99 plus shipping. At first it was all people we knew who ordered it. And then we started to get e-mails from places further and further away. I needed this product for my child but I didn’t realize how many other moms were standing in my shoes saying: “Why isn’t a produce like this available? My child has autism. My child has Down syndrome. My child has verbal apraxia. My child is deaf. No one can communicate with my child.” Add to that the parents of typical infants and toddlers who want signs so they can communicate with their kids before they speak and there was a market ready for Signing Time.

BLOOM: What are the greatest challenges your daughters and other kids with disabilities face?

Rachel Coleman: The greatest challenge is other people’s perceptions of my children’s limitations – and that includes me. We think we’re so old and wise and of course we want to protect our children and limit their bad experiences. I remember when Leah wanted to be in the school spelling bee. She was mainstreamed and she was the only kid in the school who was deaf. My heart was pounding, thinking this is a really bad idea. If the word doesn’t have a sign, the interpreter can’t finger spell it to Leah, because that would give her the answer. Leah was in Grade 4 and it was for grades 4, 5 and 6. Well, Leah won the spelling bee and the entire school stood up and cheered and screamed. I saw that even I limit my daughters and it’s something I will always have to be aware of and work on. Of course parents want to protect their children but we need to follow their lead: we need to let them fall, let them fail, and let them win the school spelling bee.

BLOOM: What other advice would you give parents of kids with disabilities?

Rachel Coleman: Do not default your stewardship – and the fact that you are the parent – to an expert. Ever. If an expert tells you something and your instincts say ‘No way, you’re wrong,’ then do the work yourself because they don’t live with your child. You are the expert on your child and you need to act like it and educate yourself. You are your child’s advocate. You are their voice, their champion, and you may even be their legs. It’s up to you and no one is going to come to the rescue. Live big and live loud and have fun. When parents learn their child has a disability, they often start listing the things they think their child and family will never do. And they’re wrong! If you’re going to make something up, make up a list of empowering, amazing things you’re going to do. So many parents give up: “My child has a disability, it’s over.” That’s why I do the things I do and blog about it. I even write about when things don’t go well because at least I’m trying to do things differently. I love being out there as an example of what is possible, because we’re often surrounded by people who tell us “You can’t” and “Don’t try.” Why not be a light and be an example of what is possible as a family – even with a wheelchair?

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The Father's Network

I found an exquisite American website devoted to fathers of children with chronic illness and developmental disabilities.  It's called The Father's Network.

The content is powerful -- although many of the stories were written in the 1990s. This would be a fabulous place for the dad of a newly-diagnosed child to gain support and understanding and perspective.

Check out the numerous stories in the archives.

I've already looked up one of the authors to see if he'll write an update for us on his experience with his son, and have contacted the organization to find out more about it.

Too often the father's voice in the world of childhood disability is missing (or perhaps simply not sought out). I encourage you to read these stories. Let us know if you have other recommended reading by fathers of children with disabilities. Thanks! Louise

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School update

Just a quick update from my team meeting at the school this morning. It was confirmed that the focus of Ben's class is life skills, independence and communication skills. This, apparently, is so that my son can be a "productive, working member of society." However, I don't think my son wants what they have in mind for future work -- packaging or sorting or assembling or whatever "piecemeal" work is.

They don't do academic skills. They "incorporate literacy" into things like teaching the students to read a recipe.

"Why does Ben need to read a recipe?" I asked. They stressed how critical this was to him making something to eat in the future. "He has the rest of his life to learn how to read a recipe," I said. "I'd like him to be expanding his world by being able to read something he's interested in." Like a Star Wars book.

Three years ago Ben was reading at a Grade 2 or 3 level and it makes more sense to me that they be teaching him reading skills to bring his reading level up. He loves books, but the only reading they do is 20 minutes of silent reading each day.

He has two periods in the morning -- gym and art appreciation (the latter doesn't make any sense because he has poor fine motor skills and it's not adapted). In the afternoon he has social skills (where they do cooking and food preparation) and math (where they work sorting things in boxes).

They kept coming back to him being "DD" (developmental disability) and a psychological report that was based on 40 minutes with Ben. "I place no limits on my son," I said.

Even the students with mild intellectual disability in the school don't typically get high school diplomas.
 
I've asked for the IPRC (placement review committee) to be reconvened so we can look at whether there's an alternate placement in the same school or elsewhere. But that probably won't happen until Feb. or March and we were told before that there were no options.
 
I met with a psychologist who saw Ben a few years ago and she told me he can still learn and there's no reason he can't be learning academic skills at his own level.
 
If they were to use his interests (e.g. unusual Star Wars characters and the computer) they could be building his reading, numeracy and keyboarding skills with something he's naturally interested in.
 
I don't know if this is the same in all life-skills schools, but there is never any homework. I look at how much practice my other son needs to master certain skills -- through homework and Kumon -- and it seems that students who are already at such a great disadvantage don't have the benefit of homework (yes, I'm surprised I'm saying that).
 
Filmmaker Dan Habib posted an interesting response about an alternate system of testing being developing in New Hampshire for students with disabilities who can't do standardized tests. It seems that the goal is that all students work on the high school curriculum, adapted to their needs. See the last comment under Dark clouds clearing.

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A winter heart

I recently began reading a blog by the Gort family -- who have two children with special needs. Gina, the mother, wrote a fascinating post about taking a hiatus of a month to re-energize herself from the heavy caregiving demands. Her husband Tim was going to take over care of their children -- including Gwen, who is in hospital following an orthopedic surgery to straighten her back. I was looking forward to hearing all about Gina's month off, but today read that her hiatus has been interrupted because Gwen needs a tracheotomy to treat sleep apnea, which means a second surgery in the next couple of days.

The good news is that Gwen will be home for Christmas.

I'm sending the Gort family this winter heart -- a photo I took at Cherry Beach on Lake Ontario this morning. I hope it gives them courage and peace over the next few days. Louise

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Happy Persons with Disabilities Day

Happy International Day of Persons with Disabilities!

This morning I spoke with an educational consultant/advocate about my concerns re Ben's high-school placement.

He gave me hope that it was worth fighting for a setting that meets Ben's needs. If we're told, as we have been so many times before, "there are no options," then the law says that the board has to "create" something. I have a team meeting at the school on Monday and will be asking them to reconvene the IPRC.

The Canadian Association for Community Living today released its National Report Card on the Inclusion of Canadians with Intellectual Disabilities, 2010.

There is some good news. Children with intellectual disabilities in high-inclusion school settings report excellent or very good health (78 per cent compared to 49 per cent in low-inclusion settings). In high-inclusion placements, children with intellectual disabilities report doing 'very well' or 'well at interacting with peers (56% compared to 38 per cent in low-inclusion settings). And some provinces have colleges and universities offering fully inclusive education (Alberta has 17 such facilities).

On the down side, only 33 per cent of children with intellectual disabilities are in high-inclusion school settings. Children with an intellectual disability are four times more likely than other children with disabilities to be attending special-education schools. Forty-one per cent of children with intellectual disabilities felt threatened at school or on the bus, and more than a third were assaulted at school or on the bus. More than half of young adults aged 20-29 years with intellectual disabilities are neither working nor attending school, compared with 12 per cent of those without a disability. And finally, young adults with intellectual disabilities are five times more likely than those without disabilities to have no formal education certificate.

The CACL's vision: All people with intellectual disabilities are fully included with their peers in regular education, with appropriate supports from early childhood through to post-secondary and adult life-long learning.

Here are a few unrelated, news stories of interest:

Stunting disabled children's growth is 'morally permissible,' group says

Up syndrome

Care at home: A new civil right

Severely disabled adults win round in court battle

Where's Molly?

Have a great weekend! Louise

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My son, the superhero

By Susan Taylor

A good friend of ours, Kirk, is a closet, superhero fanatic and cartoonist. His son and my son Jacob are good friends. When Jacob, 6, needed a new pair of ankle-foot orthotics (AFOs), he had a hard time deciding what design he'd like imprinted on them. His last two pairs had featured Superman and Spiderman, but this time he wanted something different.

“How about Super Jacob?” Kirk suggested. Jacob thought this was an AWESOME idea. “Would Super Jacob wear a cape?” asked Kirk. “Yes, a green one! And he carries a shield!” replied Jacob.

“How about a force field to protect against bad guys?” asked Kirk. “Yes! And boots with rocket-fire jets for fast getaways!” enthused Jacob.

Kirk went to work with his paper and pencil, and soon, Super Jacob (above) came to life.

John Kooy, certified orthotist at Holland Bloorview, was happy to transpose the digital image of Super Jacob provided by Kirk onto Jacob's new AFOs. John noted that this was the first pair of orthotics he's ever done with a custom superhero design. Often children choose or bring in favourite art work, patterns, pictures or characters.

Kirk and Jacob were so pleased with the end result that they've decided to form SUPER POSSIBILITIES, a not-for-profit service that will give kids needing AFOs or other supports the opportunity to proudly wear their inner-superhero personalities!

Kirk says he can create a custom superhero based on a couple of photos of a child and a phone interview. “I am keen to do this and have a few artist friends who are willing to help if demand gets too high.”

Kirk and Jacob charge nothing for their time. They simply hope that they can help build a new league of superheroes, one AFO at a time!

If your child wishes to have their own unique superhero designed for a pair of orthotics, e-mail Kirk at kserjeantson@rogers.com or Susan at susant@rogers.com.

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