Friday, December 31, 2010

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!

Monday, December 27, 2010

iPad app recommendations

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

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


Thursday, December 23, 2010

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!

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.

Monday, December 20, 2010

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?

Friday, December 17, 2010

A cameo appearance at the school assembly

Thursday, December 16, 2010

'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.

Tuesday, December 14, 2010

'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.

Monday, December 13, 2010

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).

Thursday, December 9, 2010

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 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?

Tuesday, December 7, 2010

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

Monday, December 6, 2010

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.

Sunday, December 5, 2010

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

Friday, December 3, 2010

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

Wednesday, December 1, 2010

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 or Susan at

Monday, November 29, 2010

'Would you like to have Down syndrome?'

By Amy Julia Becker

Our daughter Penny (above left) was born with Down syndrome almost five years ago. After the initial shock of her diagnosis wore off, we began to feel grateful – privileged even – to have a child with an extra 21st chromosome. Penny introduced us to a world of special needs and special people. She opened our hearts to a wider understanding of what it means to be human and what it means to see every human being as a gift.

Penny has a little brother, William (above right), who is a typically-developing two-year old. She has another sibling on the way, due in January. When I was pregnant with William, I often received comments about how good it would be for Penny to have siblings. To have role models, so to speak. And I often responded, “Yes, and how good it will be for Penny’s siblings to have her.” As a role model, so to speak.

In our culture, having a family member with a disability is often viewed as a burden. When I wrote a piece for the Motherlode blog of the New York Times (Deciding Not to Screen for Down Syndrome) about my choice not to undergo prenatal screening during this pregnancy, many of the comments implied I was a negligent mother: negligent to the child in the womb, perhaps, but more so to William. William, it was assumed, would shoulder the ‘burden’ of caring for his sister, and he would also shoulder the ‘burden’ of caring for his younger sibling should I give birth to another child with special needs.

And yet when I look at Penny and William together, I don’t see one child who’s a burden and one child who’s bearing the brunt of having a sister with a disability. Rather, I see Penny and William in relationship. There are some difficulties—Penny grabs her brother’s toys sometimes and pesters him with her foot during meals and talks to him in a stern voice if he disobeys. William has temper-tantrums and says “no” just to bug her and grabs her toys in return. Together, they are learning how to share, how to communicate, and how their actions impact other people. Penny has a little brother who will help her when her fingers can’t manage a fine-motor task. William has the privilege of growing up with a big sister who has more empathy than almost anyone I’ve ever known. He sees her scamper to get a cane for her great-grandmother. He hears her ask to pray for the little boy in her class at school who can’t walk. Perhaps he notices the look of alarm on her face now that my pregnancy has progressed enough that I struggle to get up from playing with them on the floor. He sees the look of concern whenever he cries and she rushes to his side: “Do you need a hug, William?”

In other words, Penny is already a friend and an annoyance, a role model and a sparring partner. Some of that is because she has Down syndrome. Most of it is just because she’s his sister.

But life will be harder for Penny, I suspect, as she navigates the challenges of a society that has trouble accepting her and often mocks the characteristics associated with her condition.

Despite all the limitations that come with Down syndrome, I continue to believe that Penny’s life is a gift, and that she has a positive role to play in our family and in our community.

I was talking about these things with a friend the other day, and I said, “Other people see it as a negative that Penny is in our family, but I see it as just the opposite. I often wish that I had grown up with a sibling with Down syndrome. I think I would be a different person, a better person.”

My friend replied, “But have you ever wished that you personally had Down syndrome? If Down syndrome is a gift, then is it a gift you would want for yourself?”

And I said, “The thought has never crossed my mind.”

At first, I felt guilty. In this hypothetical universe, why wouldn’t I want that extra chromosome? Some of my answer stems from the reality that life with Down syndrome is, in many ways, harder than life without. But some of it is that I’m content with who I am, just as I am content with who our daughter is. I wouldn’t add a chromosome to my genetic makeup, but I also wouldn’t take it away from Penny’s.

What I would do, however, is offer every individual who doesn’t have Down syndrome the opportunity to know and love someone who does. People with Down syndrome are often talked about in polarizing terms. They are either a ‘burden’ or they are ‘angels.’ Neither is true. People with Down syndrome are people. Many of them face medical, social and emotional problems. Many of them also exhibit an extraordinary sense of compassion and care for others. Will Penny be a burden to her brother? I doubt it. I suspect that she will be a blessing to him, that she will add great joy to his life even as she needs his help in aspects of her own.

So I’m back to where I started: grateful that Penny and William have each other, grateful that this new baby will have these siblings, and grateful that I have the privilege of knowing and loving each one of my children.

Amy Julia Becker writes about theology, disability, family, and culture at Thin Places.

Friday, November 26, 2010

Forever 14

I was facilitating a workshop for the Ontario Association of Children's Rehabilitation Services a few weeks ago and I met a warm, wise woman named Mary Herlick. Mary shared with the group that she had lost her son Eddie (above) last year. Mary is still involved in trying to improve life for other families of children with disabilities. I asked her to share with us coping strategies for parents who have lost a child. I'm very grateful for the beautiful piece she's written below. Louise

By Mary Herlick

My son Eddie (above) had dark hair, long curled eyelashes, and brown eyes. He also lived with cerebral palsy, communicated with facial expressions, had a G-tube, and used a wheelchair. Eddie had frequent admissions to hospital for continuous dystonic muscle spasms. He fought so hard, but with no treatment options left, Eddie died on October 13, 2009. Eddie died quietly, in hospital, surrounded by his family. He was 14 years old – now forever 14. My husband, Eddie’s twin sister and I miss him terribly.

The emotions a mother has when her child dies are enormous: overwhelming sadness, shock, numbness, anger, unfairness. Each parent’s journey with grief is individual. No two parents have the same feelings or reactions. I will share with you my journey of how I’m learning to move from days filled with my son’s presence to days filled with his memory.

As the early days passed, the enormity of my loss became real. I remember waking up days after the funeral, feeling fully rested, and thinking: ‘How am I going to live without Eddie?’ I thought back to when Eddie was three months old and diagnosed with cerebral palsy. I remembered the shock and sadness I felt then, the weeks of crying to mourn the loss of the child who was not going to have a typical life, the changed plans, and the adjustments. Knowing that I had experienced deep pain once – and that life with Eddie had been rewarding and filled with joy – I knew I could learn to accept this change in plans once again.

I have found it very important to really listen to my feelings. I try to stay in the present moment. I do what I feel like doing. I don’t worry about what others think I should be doing or not doing at any given moment. In the early months after my son died, I told my closest friends I needed to be with them. They made that happen. I have wonderful friends who listened, cried, hugged and reached out to me. When I feel down, I let them know and they lend an ear, an immediate email, or a card comes my way. My extended family has supported me: they call and ask how I’m doing and they mention Eddie’s name. How important it is to me that they mention Eddie or write his name in a card!

There is so much time in a day and a night to fill. Many nights I have trouble sleeping. What helps me? Some nights a warm cup of milk, going downstairs to sit quietly, or melatonin (a natural supplement) just before sleep. And some nights nothing helps and I stay awake all night. That’s okay because I know that I am doing the best I can.

As the days turn into months, I feel stronger and I feel hopeful. I have more good days than not. On my good days when I have lots of energy I do the usual household tasks. I cook big batches of favourite recipes and freeze the extras. I take long walks, enjoying the fresh air, taking in the beauty of nature, and listening to the sounds around me. I am able to set my own hours so I work longer hours on these days. I think about all that my son endured, how he persevered through it all, and how I am thankful to God that he no longer has to suffer. I also gently sort through my son’s belongings, a very hard but meaningful task for me, feeling each item, and carefully deciding to what organization or to whom I want to donate it.

How do I manage on the down days? I do just what I have to do to survive. I work but only as much as I need to, I breathe (long, deep breaths), I cry, I light a candle, I pray, I sit outside, I call a friend, I listen to music, I remember.

If you are reading this and you, too, are bereaved, here are a few tips I have learned from others:

• be kind to yourself and honour your feelings (I believe this is the most important).

• take care of yourself – eat nutritious food, drink lots of water, get rest, exercise.

• crying is good for those who can cry. Not crying is normal and okay too.

• it is a myth that time heals. The truth is that acknowledging your feelings and working through your grief allows healing.

• prepare ahead of time what you might do on your child’s anniversary or during the holidays (I learned the hard way that not having a plan resulted in a very anguished day).

• anticipate what you will say when asked the question, “How many children do you have?” I have said different things in different situations: “I have one living child” and “I have one child and my other child died” are examples. My favourite is: “I am the mother of two children, a daughter who is 15 and a son who lived to be 14.”

• when introducing yourself to others, place your hand over your heart, take a deep breath and tell those gathered the name of your child who died.

• keep a notebook handy to write down strategies that help you, which you can pull out when you are having a hard day.

For those of you who are newly bereaved, slowly you will find your way too on this new journey. When you are ready, I highly recommend contacting Bereaved Families of Ontario. I have found the resource library, the newsletters, and the presentations at my local chapter meetings of particular benefit to me. Since the worst has already happened – my child has died – I have confidence in myself to keep trying to heal. I wish you the courage to do the same.

Monday, November 22, 2010

Dark clouds clearing

I wrote a while ago about my concerns about Ben's school placement. Thursday was our teacher/parent meeting and I left in tears understanding that Ben's program was 100 per cent life skills. In the morning Ben has gym and art, and in the afternoon he has 'math' -- which is working on a box that might contain flashlights to be put together, or beads to be sequenced on a string in a certain way -- and then social skills, which is a cooking class where they make things like bologna sandwiches. I was told the math boxes were to teach skills that might be needed in a day program where adults do 'piecemeal' work. I was also told that Ben has many defiant "behaviours" at school when he simply doesn't want to do what is asked of him.

I couldn't track exactly how we had arrived at this point. Three years ago he was at a school for the deaf in a mixed-grade class with other students who didn't have the complexity of his special needs (in other words, they were typical kids who were hard-of-hearing or deaf). The day was spent doing academics modified to his level. When it was time for Ben to move to a high school, we were given two options: a self-contained class for students with developmental disabilities in a windowless basement of a high school that was accessed through the janitor's workshop (I kid you not!), or the current school Ben is in, which was described as a school for students with mild intellectual disability.

Even though it was mentioned at the orientation, it didn't sink in that in choosing this second school Ben would not get a high-school diploma. I felt we were against a rock and a hard place: this school or the windowless basement.

Ben is able to read -- probably at a Grade 2 or 3 level -- but there is no literacy program in his current schedule. He is able to hear with hearing aids and needs phonics to improve his reading skills -- but the other kids in the class don't hear so they don't do phonics.

I met with the vice-principal and teacher today because I don't think the program is best meeting his needs. There are two distinct issues. The first, which has nothing to do with the school but with our education ministry, is that the standardized literacy and math tests in high school preclude most (many?) students with intellectual disabilities here from getting a high school diploma. I'm all for standards, but I'm also for adapting the curriculum so that every student can be successful, regardless of disability. To me, this is a rights issue. And the second is that Ben's current curriculum doesn't promote and develop his academic skills.

When I met with the school today, I was shown a graph that showed that the students in Ben's class are in the first percentile for cognitive function. I was also reminded that in a psychological assessment a couple of years ago, Ben tested in the first percentile. I shared my concerns with how this assessment was done (it lasted about 15 minutes, whereas we've had other assessments that were done over a number of days and yielded different results) and no one who knew Ben was present during the testing (important when your child uses modified signs that may not be self-evident to a person who knows ASL).

I was told that students at this level are not able to meet the requirements of the high school degree. While I thought my son was entering a school for students with mild intellectual disability, I learned that the composition of the school has changed greatly in the last two years, and that his class is actually a developmental disability class for students who are deaf or hard of hearing and have other special needs.

Apparently "DD" students don't ever receive high school diplomas.

And it's rare for students with "MID" to get high school diplomas.

There's something about the pigeon-holing of students into these categories that I find very disturbing.

I need to do more digging to understand how it is that students with developmental disabilities never get high school diplomas -- as I can think of some instances where my understanding was that they did, with a modified program.

And I need to make sure that Ben is in a program where he is improving academically -- at whatever level -- because in my mind that's why he's in school. I don't mind a small focus on life-skills, but in my opinion the scale is out of wack.

The school staff were very open to my concerns and we will have a larger meeting to look at what is best for Ben as well as consider more psychological testing.

In the meantime, I'd love to hear about school programs for students with intellectual disability in your jurisdiction. Do any of these jurisdictions grant high school diplomas? I posted an article many months ago about how there was variation between states in the U.S. on this issue. How is it equitable that a student with intellectual disability in one state can earn a high school diploma, but not in another?

Thursday, November 18, 2010

Technology: Hype or hope?

I listened to a fascinating parent panel hosted at the Bloorview Research Symposium Tuesday. It was called Assistive Technology at the Dawn of the 21st Century: Juxtaposition of Hype, Reality and Hope. It was noted that 25,000 children in Ontario lack technology that would allow them to communicate or access a computer.

Holland Bloorview biomedical engineer Tom Chau (above left) moderated a discussion between four parents whose children have tried various communication technologies. The session was facilitated by students and staff in Tom’s Prism Lab. A focus of Tom’s lab is called ‘body talk’ research. This involves developing systems to detect physiologic signals – changes in brain waves, breathing patterns or heart rate – and translate them into electronic communication for kids who are non-verbal and immobile.

I wanted to share some of the parent comments with you.

What do you think about the hype around technology?

Karen Castelane: When I think about hype I think of the positives. It grabs the attention of the general public, stops them in their tracks and makes them take note. It motivates scientists to work in this field, and donors to donate, and gives hope to parents and therapists. It shows that this population has value and endorses the notion that communication is a right for all. When I think of negatives, hype can backfire when we don’t have quick results and the technology doesn’t live up to expectations.

Donna Cappelli: When my son Julian was younger people would say: “Isn’t there all this great technology? In five years you’ll hook up something to his brain and he can do anything.” But part of me has to accept how Julian is. If things don’t happen quickly, Julian gets frustrated. As parents, we have to take pause. I used to want to jump on everything but now I want to assess it.

How realistic is media coverage about assistive technology?

Donna Cappelli: I think media coverage is important. Everything comes down to money. Some of these technologies are being marketed for gaming because gaming makes money. If the media can show that the technology can be used in these other ways, it’s good.

Christopher Hopper: It’s helping you (scientists) stay motivated and engaged and pushing each other, whether it’s coverage in the popular press or scientific journals…Early on I thought maybe this technology will solve my son’s problems. Over time I learned that maybe there isn’t anything to solve. There aren’t any silver bullets out there, no magic wands. But there are different things that we can bring to bear. Through a tablet computer with a communication software, our son has gone from a rudimentary ability to communicate in sign to saying “I want juice or water” to…surfing on his iPad on YouTube.

Karen Castelane: My son Max is a normal boy trapped within a body. There is no existing technology to facilitate his communication. He can’t reliably and consistently get his body to move to hit a switch. He has basic yes and no responses. He can’t make his thoughts and needs and wants known. People who work with him need to have absolute patience. I think a learned helplessness sets in because we have to interpret for him. When we heard there was technology here that didn’t rely on physical movement…that hope bulb went off and we were totally committed. But four to five years in, we aren’t any further ahead than when we started. It’s frustrating. Our expectations are diminishing that Max will have access in his lifetime.

Donna Cappelli: Julian is able to communicate verbally, but his teachers and others who don’t know him can’t understand him. We had high expectations for technology but one of the difficulties we’ve had is to find something consistent for Julian. And on the other hand, when we do find something, Julian may reject it even though it’s appropriate. For example, he has single-switch access through a throat sensor that allows him to turn the pages of an online book. But the books from the library that he wants to read aren’t available online. So he has the access but nothing to use it with. So everything else has to catch up with this technology.

What are your dreams for your child?

Marcy White: To find out what Jacob’s dreams are. He’s trying to tell us something. If I had to choose one thing – he doesn’t walk and can’t hold his head up and is tube-fed. But if had to choose one thing, I’d say it would be to be able to communicate. We recently began using an iPod and I’m able to see in a very short period of time very appropriate use by him. I want to find a way to open him up because I know he has a lot to say.

Christopher Hopper: My dream is that he will grow up to be happy and fulfilled. Through assistive technology, Ben’s life has changed from black to white. I have the same dream for all children who are locked in a box. Being able to express choice, preference, love – it’s universal and it is a right.

Photo by William Suarez

Monday, November 15, 2010

Wanted: an integrated gym

This post has nothing to do with kayaking, but with the expression on Ben’s face (right).

This is how Ben looks every time I pick him up after his weekly physiotherapy session at Holland Bloorview. He’s ecstatic and chipper and obviously coming off of a workout “high.” He doesn’t get a lot of exercise during the week, but this hour of walking on the treadmill, climbing stairs and tossing a ball in the gym leaves him in a sweat.

I can only imagine that he would benefit from more of it.

It made me think it would be a great business opportunity for someone to start a gym for kids with and without disabilities. It would need to have a physiotherapist and perhaps other professionals who could oversee the activities for kids with disabilities. We would be one of the first to sign up!

It reminded me of a conversation I had with Amy Baskin, author of More than a Mom last week. I interviewed Amy about children with significant developmental disabilities who age out of high school at age 21, but have few opportunities for meaningful activities during the day, leaving their parents to scramble to create a good life for them.

“Why doesn’t some entrepreneur say: ‘There are all these adults looking for something funky to do’ and come up with something creative, like a cooking club?" Amy said. "There’s a whole group of people not being served and often money isn’t the issue. It’s that there’s nothing to purchase.”

I’d love to hear of innovative businesses you know that have sprouted up to target the needs of kids or adults with disabilities.

Friday, November 12, 2010

Fairweather friends

Fairweather friends
By Lisa Young

They say that friends come and go in our lives. We hope they’ll be there for the difficult times, but that isn’t always the case. This story is about a friendship that could not survive the birth of my child with special needs.

When I found out I was pregnant with my first child, I was thrilled. I couldn’t wait to tell my family and friends the great news. Everything seemed to be going well until I hit the 20-week mark. It was at this point that I found out that the pregnancy was not going to go as well as expected. Routine bloodwork showed that I had been exposed to parvovirus in my first trimester. This revelation resulted in emergency ultrasounds, more bloodwork and a referral to the High Risk Clinic at Mount Sinai hospital in Toronto.

During this time, I found out that my best friend since high school was pregnant. This was something we'd both hoped for. We had dreamed of being off work together and having our children play together. While my friend’s pregnancy was ‘perfect,’ mine was full of stress. I became resentful of my friend’s complaints of being tired, heavy and sick with her ‘healthy’ baby. It was hard to hear this when I was just hoping my baby would make it until the 30-week gestation mark. I guess that’s when our friendship started to unravel.

My beautiful baby boy Tai (in photo above) was born by emergency C-section in February of 2004. I did not get to see him. I did not get to hold him. He was whisked away by the emergency team of doctors and nurses and put on a ventilator in preparation for surgery. We spent the next three months in the NICU at SickKids and were extremely well taken care of by the doctors and nurses. During this time, some friends and family came by to bring us food, meet Tai and give their support during what was an extremely trying time. All we needed was to know that people were around if we needed them.

My best friend never made it down to see us or meet Tai.

When we got home from the hospital, I spent the next few months in and out of doctors' offices for updates, check-ups and to resolve continuous problems with Tai. Gradually, over time, my friend gave up on me and our friendship dwindled away. I couldn’t spend my days at the playground like we had hoped and I barely had time to join playgroups we had planned to go to together. I had to cancel many playdates. Most of my maternity leave was spent in hospitals and doctors' offices.

Here is what I have learned:

1. Sometimes friends don’t know how to deal with situations like this. Instead of being supportive, they back away. That is their issue, not yours.

2. True friends will try to help. Embrace it, and say thank you.

3. It is okay to be selfish. My priority was my son, my husband and myself. I didn’t have the time or energy to handhold a friend, when what I needed most was to have my own hand held.

4. Understand and forgive. You can’t go back.

5. Try to be a good friend yourself.

After five years, I have reconnected with my lost friend and it is nice. We will never get back the deep friendship we once shared, but we can move forward and stay in each other’s lives on a smaller level.

Thursday, November 11, 2010

Caregiver health affects us all, researchers say

Many of you asked for more information about the national roundtable on the health of parents of kids with disabilities last week. At the meeting in Ottawa we heard an overview of research to date that’s been funded by the Canadian Institutes of Health Research. This research was conducted by Jamie Brehaut, Dafna Kohen, Peter Rosenbaum, Lucy Lach and their colleagues. Following is a summary provided by Jamie. Thanks Jamie!

Caregiver health affects us all, researchers say
By Jamie Brehaut

The health of caregivers is increasingly important from a policy perspective. For example, it’s apparent that parents who care for their disabled children at home are enormously valuable to the health care-system, which would otherwise incur considerably more cost providing institutional care. So understanding how to help keep caregivers healthy and providing them with tools to provide effective care makes good fiscal sense. Furthermore, it's becoming clear that caregivers of severely disabled children are only the tip of a very large iceberg. Childhood chronic conditions can have implications for caregiver health, which may put as many as 25 per cent of Canadian parents at risk for caregiver-related health issues.

In one study of 468 families of children with cerebral palsy, we compared the health of these parents to a random sample of Canadian families. Caregivers of children with CP (regardless of degree of disability) were at greater risk for a wide range of psychological and physical health problems, including emotional problems, back problems, headaches, asthma, heart disease, and many others.

In another study using Statistics Canada datasets, a broad definition of childhood health problems that included nearly one-quarter of Canadian families with young children showed that caregivers of children with these broadly-defined health problems were about 2.5 times more likely to report both depressive symptoms and chronic physical conditions.

While the majority of studies measured caregiver health at one point in time, we used Statistics Canada data to measure the health of caregivers over time, every two years, for a period of 10 years. Results showed that instead of compounding over time, health effects remained relatively consistent. However, caregiver health was affected by the complexity of the caregiving situation, with caregivers of children with more complex health problems consistently reporting poorer health.

The results of this work suggest that caregiver health is a public health issue, affecting a much broader range of caregiving situations than was previously thought, and potentially affecting as many as one in four Canadian families. There are important psychological and physical health implications of caring for a child with a long-term health problem or disability. And while there are also clear positive aspects of being able to provide care for a loved one, we need to know more about how to set up the conditions for successful caregiving, and whether some challenges parents experience can be prevented with better services and public policies.

This work has spawned several ongoing projects, including one that will use health administrative data to better understand the factors that contribute to caregiver health issues, and another focused on understanding successful parenting strategies in families of children with complex lives.