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.

Saturday, November 6, 2010

Walker's gift

Canadian journalist Ian Brown spoke at the National Roundtable on Caregiver Health in Ottawa Friday. Ian is the author of The Boy in the Moon, an award-winning memoir of his family's experiences raising son Walker, who has a rare genetic condition. Walker, 14, can't eat or speak, wears diapers and punches his head mercilessly.

Ian spoke about a health system that's so specialized, paper-based and unwieldy that it adds a whole new layer of stress and helplessness onto the lives of parents of children with complex conditions. But what most struck me about Ian's talk was his assertion that no health professional ever helped him address the deeper question of the meaning of Walker's life.

"It was seeing him in pain, when he hit himself, that was most unbearable," Ian said. "Not a day went by that I didn't despair of relieving Walker's pain or that I didn't hate myself. Yet there was no one to talk to about this bottomless abyss of darkness.

"It wasn't the keeping him alive or happy or from hitting himself that was most hard, it was that I didn't know what the meaning of his life was. Or whether he had an inner life. The most important question of all was about his soul. I don't know how you measure that in the medical world. That matters to the parent and it matters to the disabled child."

Ian spoke about how he has come to see that children with intellectual and physical disabilities "make up a community of profound value for the rest of us if we can shift the way we think." He noted that in our cure-obsessed culture, children like his son discourage doctors, leaving them with a sense of resignation. "But there is another way to approach the problem of the incurably disabled," Ian said. "I accept Walker as my equal, not just as someone who needs my help. He is someone who can teach me way more than I can teach him."

Ian noted Walker's propensity to knock glasses off tables -- often waiting for the split second when his father wasn't watching to jump into action. "I used to think he was a psychopath," he said. "But when I tried to stop fixing him and tried to understand him as he is -- not as I want him to be -- I realized he laughs when he does this because he has succeeded in showing me that sometimes he can be smarter than me. I imagine that's a liberation for him, but especially for me. It frees me from the impossible standards of normal success in our cure-oriented world. Walker's gift is that he makes me slow down and notice the value of being 'as I am' and 'as he is.' It's an antidote to the grinding survival of the fittest."

Recalling his visit to the L'Arche homes in a village north of Paris -- where people with intellectual and physical disabilities live with able-bodied assistants who choose to support the community -- he said: "I have rarely felt so alive and so alert because I could concentrate on what was happening, as opposed to what was supposed to be happening. I didn't have to exhaust myself trying to fix the problem." He noted that days at L'Arche were organized around the sharing of breakfast, lunch and dinner -- whereas in many facilities for kids with severe disabilities, children rarely eat together. "The efforts of the caregivers there are to make the children more like us -- 'normal.' They are trying to fix someone or cure someone or improve someone so they can be included in our lives. I'm not sure how people came to call that inclusion. Why don't we make ourselves more like them? Why don't we include ourselves in their way of being?"

Ian spoke of a dream community he envisions for Walker's future. "It would be a village of homes created for and by the disabled, with a dozen extra studios. People like us -- artists, musicians, doctors, scientists, researchers, parents who need a break -- could go and stay in the studios for three weeks at a time. The only requirement is that we eat breakfast, lunch and dinner with the residents and once a week we have to give someone a bath. The rest of the time we can focus on our work. In that three weeks, we would be included in the world of the disabled in a way that would change the way we think. We would no longer think of them as 'the other' but as a human being who has a contribution to make, however subtle it is, and no matter how unwilling we are to recognize it." This, Ian says, would lead us to "see the world in a new, fresh, original, and free way."

Some of Ian's suggestions for improving health care for children with severe, complex disabilities included: an electronic health record so that parents don't have to repeat their child's history interminably; a national disability iPod app where parents could search for services in their area; and a dedicated waiting room in hospitals for children with sensory and behaviour issues. He questioned how it could be that if he wanted a new knee he might have to wait in the system for six months, "but it took eight years before we could find a place where Walker could be cared for adequately."

"To 'care for your own' is an ancient impulse," Ian said, "but children with complex disabilities are often beyond the care of the average family. Instead of talking about family-centred care, we need to talk about community-centred care. It takes a community in every case. A family isn't big enough or deep enough."

The national roundtable was funded by the Canadian Institutes of Health Research and I will report its findings in future.

Thursday, November 4, 2010

Inclusion is 'about the environment, not the kid'

Dan Habib (second from right) is a photojournalist and creator of Including Samuel, a documentary that chronicles his family’s efforts to include his son Samuel (second from left), who has cerebral palsy, in every part of their lives. The film also captures the experiences of four other children and adults with disabilities and their families. I talked with Dan about what he learned about inclusion during filming. And on a related note, check out this World Radio Switzerland story today: Debate sparked on disabled children in regular classrooms.

BLOOM: How did the film Including Samuel come to be?

Dan Habib: When Samuel was about two, my wife went through the NH Leadership Series at the University of New Hampshire's Institute on Disability. The IOD is one of 67 centres for disability studies around the U.S. They brought in national experts and self-advocates. She realized it was an incredible way to learn about the education, health-care and legal systems. We wanted to be on the same page, so I took the program and it had a profound effect on me and how I saw Samuel's future. It gave me a vision for his future beyond what I could have imagined. Suddenly, instead of thinking of all the limitations, I was thinking about possibilities. I was meeting role models who were doing incredible things in the world. It got me thinking about inclusion. When Samuel was three, he got very sick: he had a tonsillectomy and aspirated blood and developed pneumonia. I'd started taking some photos in the hospital and his doctor knew I was a photojournalist and said "Why not tell the story of what it's like to be a parent of a child with a disability?" It was cathartic – to have something to do other than worry. And then I was showing my still photography to a group of high school students and they said: "We like your pictures, but without seeing video we can't connect." That's when I started to do a film. I did it while I was still a full-time photo editor. After it came out and gained momentum I pitched the idea of a job as a filmmaker in residence to the Institute.

BLOOM: Why does inclusion matter?

Dan Habib: From a personal point of view, school is the hub of our community. When we thought about what we hoped for Samuel – it was that that he'd be a participating and fully-welcomed member of our community. That meant attending his local school. If the school is truly welcoming, as they should be to every neighbourhood child, then a child can be successful in any environment with the right supports, which is what the law says in the U.S. Attending the local school has a major social impact. Because Samuel goes to school with his friends, they're over at our house every day, they know his Dynavox voice device, they know he plays baseball, they know he loves NASCAR and dinosaurs and volcanoes. He's not the kid in the wheelchair. Everybody knows him and they talk to him and with him. From an educational perspective, every piece of research we've been able to find shows better academic achievement for kids in inclusive settings. And we're seeing that for kids without disabilities as well. At the University of Wisconsin, they're working on a study that shows that kids without disabilities become much more engaged in the curriculum and retain more when they're working in partnership with kids who need some support or mentoring. They also find behaviour is better because kids become more patient and compassionate. When you're in a truly diverse environment – not just ethnicities, but socio-economic backgrounds and abilities – that's how you develop social and emotional skills. When I talk to audiences I ask them to think back to when they were at school: 'What played a greater role in who you are as a person today – relationships or academics?' One-hundred percent say relationships. That's a good thing to remind educators. A lot of school is about social-emotional development.

BLOOM: What did you personally learn about inclusion while working on the film?

Dan Habib: I've learned inclusion usually succeeds – not necessarily because of money or technology, although they help – but because of leadership from the top administrators in a district and attitude. And the attitude being that all kids deserve to be in a general education classroom and can benefit from it. And that all kids can achieve. It's an amazing thing how many educators don't believe that – how many teachers in regular ed and special ed don't have high expectations for kids with disabilities. When inclusion doesn't work, we blame it on the kids. It's because of this kid's particular qualities. In the U.S., the law is that you are in the least restrictive environment with the proper supports. I really work hard in the film and my presentations not to blame teachers. A lot of teachers, once they try inclusion, are astounded that it's not as hard as they think it's going to be and they believe they become better teachers as a result. Some teachers have told me this is the most rewarding experience they've had. But it only happens with supportive leadership, so that if a teacher is struggling, they get the training or supports they need. Universal Design for Learning curriculum and technology are important. Universal design is curriculum designed for all kinds of learners, whether they learn best from auditory, experiential or tactile experiences, or through reading. Universal design uses multi-media and technology like smart boards. A complaint of teachers is that they have to constantly modify curriculum, but universal-design curriculum comes in already modified. And even kids who have one learning style learn better when they see the information presented in a couple of different ways.

BLOOM: Is inclusion more possible for kids with certain types of disabilities?

Dan Habib: You show me any kid who you say can't be included, and I'll show you a kid with similar characteristics being included somewhere else. It's about the environment, not the kid.

BLOOM: I'm frustrated that there are no options for my son other than a life-skills program, when I feel he could still be making academic gains.

Dan Habib: I believe life skills are best learned when a kid is living life with peers. You can't sit and teach a kid life skills in an artificial environment. If we're focused on getting a kid to tie his shoes and brush his teeth, we're aiming the bar low. Samuel will never tie his shoes or make a sandwich, but people have told me he's made a bigger impact on them than anyone else they’ve ever met in their life. I heard Amanda Baggs, the autism rights advocate, in an interview and she said: "I can't tie my shoes, but I get paid thousands of dollars to give a speech. I can pay someone else to tie my shoes." That said, it can be scary for some parents to include their child in a regular-ed classroom. They may fear that their child will be bullied or fall behind. Or they’re afraid their child may lose the supports they need to succeed. It’s really important to understand the parents' perspective, and talk about what it's like for a parent to navigate the system and try to advocate for their child.

BLOOM: Is inclusion harder for children with intellectual disabilities?

Dan Habib: Inclusion is possible for everyone, but our society does have stigmas around certain types of disabilities. If a child has an intellectual disability there are lower expectations for that child. If a child has behavioural or emotional issues they're seen as scary or dangerous. A child with a physical disability may not be able to get into his or her school. I think there's a particular stigma against kids who are non-verbal. In our society, if someone can't talk, we associate them with having less intelligence, lower our expectations and don't work as hard to include them.

BLOOM: Is inclusion easier in the younger years?

Dan Habib: Generally people see inclusion becoming more difficult as the curriculum becomes more demanding. But I think there will come a time when we look back on the segregation of kids with disabilities like we do now on segregation by race. It doesn't make any sense. It's very strange and artificial. What are the limits of inclusion? We haven't even tested that theory yet. We're doing such a bad job of it in most places. Parents have to make tough choices. They're often forced to accept a segregated setting. I've never met a parent who said: "My first choice is not to have my child be part of the community school."

BLOOM: Are there times when a specialized, segregated program makes more sense?

Dan Habib: If a school is very supportive and inclusion is still not working, there are a couple of things to keep in mind. One, just because a child leaves a school for a certain amount of time, doesn't mean they can't come back. And two, there are alternative settings – not typical mainstream classrooms but not self-contained classes. Many kids can benefit from more creative, alternative settings. There are times when there's a level of crisis in a child's life that makes inclusion difficult – a mental-health crisis or physical crisis – so we need some specialized programs. But there are far too many of them.

BLOOM: What impact did you hope your film would have?

Dan Habib: When I was making it, my public hope was that it would have a big impact in New Hampshire, and my secret hope was that it would have an impact nationally. The impact has far exceeded anything I hoped for. It's been broadcast on national public television, shown at film festivals around the world and translated into 17 languages. I've given over 200 presentations in 30 states and Canada. It's been an amazing journey.

BLOOM: Is your work at the Institute focused on promoting Including Samuel – or are you working on a new film?

Dan Habib: My work is all film-based. I'm still doing a lot of work with including Samuel – about two-thirds of my time. But while I was making that film, people kept saying "what about kids with emotional and behavioural challenges?" I'm working on a new film that will be out next year that looks at inclusion for these children. I've followed one young woman over the last year and documented her life and how she made her way through her senior year with the support of a lot of people after having lived homeless with a drug-addicted mother and selling drugs herself.

BLOOM: What advice would you give other parents as to how to pursue inclusion?

Dan Habib: The first thing is having a vision for your child. What do you want for your child? We want our child to be happy, to be a full member of the community, to learn a lot and to go to college, and that kept pointing to him being in a regular local school. It's about being involved in your kid's life and working hard to be a teammate with the school – to be a problem-solver and not to be antagonistic, but not to be a pushover. You need to be the squeaky wheel and be forceful, and you need to know the law as well as you can. One thing we've always done is tell teachers: "Don't be afraid to fail sometimes. We'd much rather you try and fail." We don't expect our teachers to be perfect.

BLOOM: Tell me a bit about Samuel now.

Dan Habib: He's 10 and in the 5th grade at the same school. Throughout elementary school, inclusion has worked really well for Samuel. It's not perfect, of course, but we've had a great time with a very problem-solving approach. We've had a lot of communication by e-mail and notebooks and meetings. We're all on the same page and it's a matter of working together to figure things out. Challenges have been logistical, but never out of ill intent. Samuel’s doing theatre. One of his friends suggested that Samuel would be able to drum. So he's doing drumming in music at school – whatever that may look like. He played baseball in the spring and will go skiing this winter. He's done karate and judo and rides an adapted bike. He loves video games, PlayStation and YouTube. In most ways, he’s a pretty typical 10-year-old.

Wednesday, November 3, 2010

A dentist with a different approach

A dentist with a different approach
By Marcy White (above with Jacob)

I took my eight-year-old son to the dentist. His appointment was the last one of the day, at 3:30. From the moment I woke up, I felt a ball of dread bouncing around in my stomach.

Taking Jacob to any appointment is an ordeal. Physically, it is difficult for me to carry him into the car. There is a lot to remember to bring with us, including bibs, a change of clothing, diapers and – depending on the time of day – pre-measured medication loaded into syringes, his food and his feeding pump. Emotionally, medical appointments are challenging because Jacob hates being examined. He yells, his only way to protest, for the entire duration of the meeting.

As much as I tried to put the day’s consultation out of my mind, it kept popping back into my consciousness and I imagined the sound of Jacob's angry screams reverberating in my ears.

His school bus arrived home at the usual time, 3:10. I immediately placed him into his car seat and clumsily heaved his 100+-pound wheelchair into the back of my van. During the 15-minute car ride, I told him where we were headed and reminded him that he was a big boy and didn't need to be scared.

I explained to Jacob that the reason we were going to a new dentist is because this is the dentist his sisters go to. Sierra and Jamie really like him and we thought Jacob would like him too.

For a child who’s fed by a tube inserted directly into his stomach, one would think that dentist visits were not necessary. Ironically, that is not the case because the act of chewing cleans teeth, in much the same way as a toothbrush does. Because Jacob doesn’t chew, plaque accumulates in his mouth at a much faster rate and he needs a dental exam every four months.

Until that day, Jacob had always seen an experienced dentist, a professional who rarely spoke directly to him. My son’s typical behavioural pattern was to start screaming uncontrollably the second his wheels crossed the threshold of the exam room.

Jacob's screams are incessant. They leave him soaked in sweat – as if he has just emerged from a shower. He chokes during the appointment because he cannot swallow all the secretions that his yelling causes. In short, the dentist visit is torturous for all involved, but it's hellish for my son.

Sadly, most of the medical professionals we've encountered over the course of Jacob's eight years have had virtually no social interaction with him. I cringe each time the doctors ignore my son – the patient – and speak only to me. When I inform them that Jacob understands our conversation, they still don’t interact with him. They often begin their examination without asking Jacob’s permission to touch him or explaining what they will do. I didn’t expect today to be any different.

As we entered the small, non-air-conditioned office we were told that the dentist would see us shortly. I wheeled Jacob into the waiting room and banged into a chair along the way because the aisle was not wide enough for Jake's wheels to pass easily. I sat down next to my son and reminded him about what would happen during the appointment. A few times his mouth contorted into the saddest frown that made me want to cry, but Jacob was able to compose himself. He was trying to be brave.

The room was hot and stuffy and I worried that the temperature alone would upset him. A friendly hygienist came up to us, crouched down and told Jacob that it wouldn't be much longer until it was his turn. Jacob looked at her and listened while she spoke to him. I can’t remember the last time someone at a doctor’s appointment thought to bend down and speak directly to my son. The simple act of conversing with Jacob, at his eye level, was enough to make me notice that so far this appointment was different from most of the other ones we've been to.

A short while later, the dentist, a tall, lanky man with a big smile, walked into the room and promptly shook Jacob's hand and said: “Hi Jacob, my name is Ed.” Instead of breaking into an ear-piercing shriek at the sight of this stranger, Jacob lifted his head to look at the newcomer. He was curious and willing to let this person speak to him. Ed sat down on his stool and explained, to Jacob, what he wanted to do during the appointment. He then asked Jacob if it was okay with him. Treating my son like a person was all it took for Jacob to listen and not scream. When it came time for the actual exam, my son was calm and co-operative.

My heart was racing; I was amazed by Jacob’s behaviour. I couldn’t believe this was the same kid whose screams are legendary at the hospital where we attend most of our appointments. I was so proud of my son and felt like giving the dentist a huge hug. I tried explaining how dramatically different Jake behaved and how talking directly to him made such a difference. I don’t think Ed fully understood the magnitude of this event and how it altered things for us.

Later that night, when I replayed the afternoon in my head, I felt a heavy sadness in my chest. I realized that during all the previous appointments Jacob was probably screaming for someone to explain what they wanted from him. It was terribly distressing to me that it took eight years to find someone who was willing to look past Jacob’s physical impairments to see the person in the wheelchair. I imagined how different the past eight years would have been if the doctors who had ignored my son had treated the whole person he is – and not just a body part.

Since that momentous day, Jacob and I have changed. At the start of medical appointments, I tell the professional that Jacob does not like being examined and doctors scare him. But if they speak to him and explain what will happen, he might be more co-operative. So far, it’s worked. Appointments are still physically difficult, but they are not as terrible as they once were.

And if you need a dentist, I can give you the number of a great one.

Monday, November 1, 2010

'To be seen and loved'

When my son Ben was in hospital here earlier this year, Owen Turney (right) came for a visit. I got to know Owen's mom Jennifer through Holland Bloorview years ago, and it was through Jennifer that we met Sallyanne, who works with Ben. Sallyanne spent a lot of time with Ben in hospital. I'll never forget the look of mischief and merriment on Owen's face the morning the two boys surprised me in my office a few months ago. Owen was known for his radiant smile and it was impossible not to smile back. He provided a much-needed dose of joy that day.

Owen died unexpectedly a week ago, early one morning, in his own bed, while sleeping. I'm honoured to share this piece written by Jennifer and read at Owen's funeral. It holds a very important message.

By Jennifer Johannesen

Owen provided light and goodness to all those around him. He graced us with the gift of his smile, his laugh and his wide-eyed gaze. His effect was so profound, it is easy to imagine that he was heaven-sent for the sole purpose of bringing love to us earth-bound mortals.

There is no doubt: his energy was generous and loving and all encompassing – his value to this world is not to be underestimated.

But as I contemplate this thought, the circle of Owen’s life now complete, I know that there is much more to his story than this.

Owen came with immense challenges. Throughout his entire life, he was impossibly – sometimes unbearably – vulnerable and needy. Was he this way solely for our benefit? Surely there are easier ways for a soul to spread love in the world.

I believe he came as he did because he was on his own path of discovery, growth and healing. To only see him as an angel sent from above is to possibly miss the entire point of his life.

Perhaps his brilliant light shone because Michael and I chose to expose him to the world, love him completely, and not hide him away – and this community responded by looking – by holding our son in its compassionate, loving gaze. Maybe this is what he came for – to fulfill his soul’s need to be seen and loved, broken body and all. Perhaps his karmic need to be loved was so great that there was no option but to arrive in the body he did.

If this is the case then the value of Owen’s life is realized not in spite of his disabilities, but because of them.

Owen came to us, in his perfect broken state, seeking unconditional love and care. Your profound expressions of love and compassion, every day of his life, showed him he was worthy – giving him the lightness to smile back and say thank you.

Owen could have remained invisible, as so many like him are. Instead, we loved him deeply – and because of this I believe he returns home fulfilled and whole.

Please read more about Owen at Jennifer's blog: Yes or No.