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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