Wednesday, February 29, 2012

Sting of social rejection partly physical

By Louise Kinross

Brain regions that light up in response to physical pain are similar to those processed during social rejection, according to a new paper that suggests that feeling ‘broken-hearted’ is not just a metaphor.

In this month’s Current Directions in Psychological Science, Naomi Eisenberger, co-director of the Social Cognitive Neuroscience Lab at UCLA, surveys recent research that shows that social pain triggers neural regions associated with the distressing emotional experience – and sometimes even the sensory experience – of physical pain.

“It suggests that there is something real about this experience of pain that we have following rejection and exclusion,” Eisenberger says.

She also found that people with a gene that makes them more sensitive to physical pain are also more susceptible to the sting of social rejection. According to studies Eisenberger references, medication like Tylenol designed to relieve physical pain can also kill emotional pain, and emotional support – such as holding a loved one’s hand – reduces physical pain.

I thought this overlap between social and physical pain had interesting implications given that children with disabilities are at greater risk of experiencing both. Thoughts?

Saturday, February 25, 2012

Should kids be asked to care for a disabled sib?

This is the author's note to Pillow: A sibling story, which was written by Sophia Isako Wong. Sophia has a 40-year-old brother with Down syndrome. She is an associate professor of philosophy at Long Island University in Brooklyn, New York. She writes about political and educational inclusion for people with cognitive disabilities and justice within family relationships.

I wrote this story to illustrate how typical siblings may feel when they provide “respite care” for their parents. Research shows that parents often believe that their children are emotionally mature enough to recognize their own developmental needs and to speak up for themselves. One parent said, “I know if it’s too much for her she’ll tell me.”

Let me tell you a secret: we sibs don’t tell our parents how we truly feel. Our motto is “Never mind me; you have enough to deal with. I’ll figure it out by myself.” If our behaviour seems untroubled and serene, that’s because we are experts at hiding our worries, resentment, envy and nightmares.

In families untouched by disabilities, sisters and brothers fight, argue, sulk and express the whole spectrum of feelings toward each other. In our families, we never get that opportunity. With our sibs, it is never a fair fight. Even if we have a just cause, the disabled child usually gets the lion’s share of our parents’ attention and sympathy.

We’ve learned through experience that we are rewarded with positive attention from parents for being the easy child, and sometimes reproached for making more trouble for you. So we often help you without complaining.

We watch you every day. We see that parents have far too much to do, resources are lacking, and there aren’t enough hours in the day.

When we notice how exhausted you are, we fear that you won’t be able to take care of us adequately, or you might have to quit your jobs, and where would we be then? So we volunteer to give you a break, thinking this will help the whole family survive. “Parentification” is what happens when children perform the role of parent at the expense of their own developmentally appropriate needs and pursuits. When children take on responsibilities performed more appropriately by an adult, they feel torn between looking after the vulnerable sibling and taking care of their own needs.

If a child or teenager (mistakenly) perceives that his needs are less important than the needs of others in the family, he may volunteer to sacrifice time and energy he would otherwise devote to school, friendships and typical childhood activities.

Research shows increased risk of psychological and social problems in some siblings who are burdened by excessive caregiving roles and who, in effect, become ‘little parents.’

Here’s the good news: the whole family benefits when parents take breaks from the exhausting work of caring for a child with disabilities. Parents need to take care of their own health by asking support staff, neighbours, friends and family members to help out. Doing so gives them precious time to rest and recover from the stresses of parenting a child with disabilities.

Even if your typical child is eager to babysit, and is supremely confident she can handle it, please make sure an adult is supervising her at all times. That way, she doesn’t have to function as an adult before she is ready. By helping but not being in charge, typical children can continue to focus on what they need to be healthy and safe.

Trust me, we siblings of kids with disabilities feel intensely guilty whenever we play with other kids, master skills that the disabled sib will never learn, or pass for normal in a crowd. We’re acutely aware that we are very lucky to be non-disabled, and that we might have been born in the disabled sib’s shoes.

Some of us are forever trying to make it up by being on our best behaviour, concealing our negative feelings and accepting more than our fair share of household chores. Many of us see ourselves as Super Sibs: born to babysit. You may even believe that we are more high-functioning and more emotionally mature than other kids our age. Don’t be fooled: we are kids with the same concerns and complex emotions as other young people.

So if your child volunteers to babysit before she has become a competent adult mature enough to have her own children, I hope you’ll think of Pillow and Sister and say: “No, honey, go ahead and play. We’ll hire a babysitter, use respite, or ask other adults to help us when we need a break.”

Friday, February 24, 2012

Pillow: A sibling's story

This is a short story written by an adult sibling about the emotional bind siblings feel when they're burdened by excessive caregiving of a brother or sister with disability. We will follow the story this weekend with a note from the author about her personal experience and research. I hope this will spark a lively discussion.

Pillow: A sibling's story

Every time Sister packs for a trip, she takes along Pillow, a battered cushion in a rectangular cotton cover. Mysteriously stained, once-white, with a print pattern in faded primary colours, Pillow looks suspiciously childish for a trilingual woman in her 20s fearlessly travelling the world.

Sister recalls the day she got Pillow. It was a spring afternoon, and her parents wanted to visit the new IKEA store. They usually went everywhere as a family, but Brother was so slow and clumsy. He touched everything, spoke loudly and often made everyone stare in public places.

Sister felt embarrassed just imagining what could happen if they all went together. She knew they couldn’t afford a babysitter. Her parents were eager to go out for a change of pace, so she said she’d rather stay home alone with Brother. Easier for everyone that way.

Mom and Dad are back, their arms full of new things. After describing the taste of the Swedish meatballs, Mom holds out a small white pillow. “We got something for you, Sister. This is your reward for being such a good sister while we were out shopping.”

Surprised, Sister wonders: What about Brother? He’s been home alone as well.

Looking closely, she notices bright red teddy bears, pink-faced dolls and yellow trucks all over the pillow. Do her parents think she’s still a baby?

Just this morning they said, “You’re very mature for your age. We know you’ll be fine looking after your brother until we get back. Thanks for offering to do this.” Sister panics. Wait. Have I missed something?

She runs through her checklist: I made sandwiches for lunch, cleaned up the kitchen, told friends I can’t play today, helped him in the bathroom, played in the yard, then sang softly to calm him down after he got scared by a neighbour’s dog. She inspects his face and hands. They look clean enough.

Holding her breath, Sister wonders if they will detect that Brother tripped and scraped his knee while running in the yard. Parents and teachers seem to have a way of knowing when something bad has happened, even when kids don’t tell them right away. What if they notice the scrape later? They’ll be so angry at me for letting him hurt himself. Selfish me, I was the one who wanted to play outside since it’s so nice out. I knew I should have kept him inside all day. I’ll never forgive myself if his leg gets infected now.

Sister decides to volunteer to help with bath time. That way nobody else will see the scrape. I guess it’s okay I didn’t call the doctor. It wasn’t an emergency. She puts on three drops of iodine to disinfect the scrape before sticking on the band-aid, just as she’s seen her parents do a million times.

As she takes the pillow, Brother hugs her. “Thanks for taking care of me. I’m so happy you’re my sister.” What a relief. Brother’s already forgotten about his scrape.

Sister isn’t sure whether she deserves this unexpected gift. She’s anxious to get to the math homework she hasn’t even started. She presses the pillow to her chest and says the magic words that make them smile. “Thanks, Mom and Dad. You can go to IKEA anytime you want.”

Thursday, February 23, 2012

Friendship part 2

A week ago a blog of mine was picked up by the Huffington Post. It was about the lack of friends in my son Ben's life -- and research showing that isolation is a significant problem for our children, particularly in the teen years, when their social world shrinks instead of expanding.

It's not a topic that anyone likes to talk about. Who wants to admit that their child has no friends?

It really hit me a couple of years ago when I was programming a voice device for Ben and couldn't think of a single authentic friend to include on the friends' page. And this for a boy who has always expressed his desire for friends, and was capable of having some as a younger child.

Over 750 people commented on the post, which tells me that friendship is something we value, that many people struggle with it -- disability or not -- and that this is a big issue.

There were many suggestions: build your child's interests because friendship is based on common interest; join with other parents of kids with disabilities to promote friendships or reach out to programs for kids with disabilities – especially overnight camps – where your child may be better understood; get a service dog; seek out people with alternative lifestyles; use the internet to break barriers, either by setting up a blog or Facebook page.

A number of people were adamant that typical children can never have authentic relationships with our kids, and that they shouldn't be 'forced' to. Even some seasoned parents of kids with disabilities agree: “No matter how kind the typical child or family, the only reliable peers are from the world of disabilities too.” I’m not quite sure what to make of this. It doesn’t sit right with me, but I'm well aware of how complex the issue is.

That's why this piece today by a blogger with spina bifida in the Huff Po bothered me. She argues that if only parents would toughen up and send their kids into the real world, all would be well. "In an effort to protect their children, some parents will only seek out other disabled children for potential friendships," she writes.

I find her tone self-congratulatory ("My family always taught me how to do for myself") and blaming of kids who are more complex and need more support. "I had to make friends with the 'normal' kids because they were the only kids around," she writes.

The comments on my Huff Po piece tell me that many youth -- with and without disabilities -- are unable to 'make friends with the normal kids' despite best efforts. Struggling to find good friends seems to cross every line, and certainly the disability one.

I heard from some organizations that are promoting inclusion or access for people with disabilities. Game Accessibility from the Able Gamers Foundation advocates for accessibility in video games and has great resources. Unified Theatre brings together kids with and without disabilities to develop and perform plays. The concept is simple, reads its website: let teens lead, let creativity rule and treat people with disabilities as complete and entire equals. Together Including Every Student is a peer-matching program that brings students with developmental disabilities together with student volunteers to participate in community activities. Side by Side is a parent’s blog post about a boy’s successful inclusion in a regular school program.

There were parents of kids, with and without disabilities, high school and college students, disabled adults and a businessman who contacted me, wanting to know how they could make a difference. A counselor who also has hearing loss wants to adapt fairy tales to include our children – her first is about a princess who is deaf/hard of hearing. Given Ben’s tiny size, she thought he might be a candidate for inclusion in Jack and the Beanstalk! A breeder offered to donate a pup as a service dog.

The response from my Huff Po piece leaves me hopeful.

Ben and I set up a Facebook page.

What are your thoughts?

Tuesday, February 21, 2012

The upside of going downhill


The upside of going downhill
By Ijeoma Ross

We happened upon skiing almost by accident. Four years ago we had a bad case of cabin fever. Canadian winters are hard with a child in a wheelchair. Going down south or on a cruise was too expensive. Cruising online we happened across Maine Handicapped Skiing (now Maine Adaptive Sports and Recreation) based at Sunday River Ski Resort.

We couldn’t believe that our son Deane could go skiing at Maine Adaptive for free (the group offers free lessons to children and adults with physical disabilities). Deane, who has cerebral palsy and uses a wheelchair, would be taught to ski by volunteers. And we could ski with him. We booked five afternoons and over March Break drove to Sunday River.

The team at Maine Adaptive was amazing. They have an occupation therapist and equipment “doctor” on site who assessed Deane’s strengths and abilities and adjusted and adapted equipment for him. Their building is slopeside so the skiers can get fitted and go right on to the hill.

It is a busy place with volunteers and skiers of all abilities coming and going. Deane and his “team” made up primarily of his father (Mark) and a good friend (Ali), who is a keen skier, were immediately welcomed. Because of their experience, expertise and friendliness, we will be going back for our fourth year in March.

For the first two years, Deane skied in a slider – the front of a walker on skis with arm rests for him to help support his weight while on his own skis. A volunteer would control his speed and direction from behind using straps attached to the slider.

The volunteers were more than willing to teach Mark and Ali how to control the slider. By the end of the second year, the volunteers were there primarily in a teaching role.

Other family members and friends could ski down the hill with Deane - as long as we stayed out of the way!

This past year we switched to a sit ski because Deane had the beginnings of hip dysplagia. Deane was more than happy with the move. Because the sit ski is more stable it can go faster and Deane loves speed. Now I’m working to keep up with him.

For the past two winters, we have also been skiing with the Canadian Association of Disabled Skiing (CADS) at Brimacomb Ski Hill outside of Oshawa.

There are provincial branches of CADS across the country with different ski hills running programs. In total CADS has 1,130 skiers assisted by 1,900 volunteers to participate in recreational and competitive snow skiing and snowboarding.

At Brimacomb, a team of dedicated volunteers take 30 skiers out on the hills for one of three 1.5 hour lessons each Sunday for eight weeks during January and February. All equipment is provided by CADS.

It is a tight-knit group of instructors, volunteers, family members all there to help the skiers get the most out of their time on the hill.

All of the instructors and volunteers must be trained on all of the equipment from sit skis to harnesses for blind skiers and three-track outriggers for leg amputees. Family members are encouraged to take the training so they understand the process. The cost is $110 for participants and $35 for volunteers to cover the insurance.

It was at Brimacomb that Deane first moved into a sit ski. Mark and Ali were trained to drive (holding on to the back bar on the sit ski) and tether (holding a strap while skiing behind as an anchor). In our first year, I found it difficult to keep up with the speed of sit ski.

This year, I have learned to tether and have loved being a crucial part of Deane’s skiing.

There are not many activities that both Deane and his sister Rayne, who is not disabled, can do together. Skiing is one of them. It has become an integral part of our family’s recreation.

On the iPad Deane uses to communicate, he will readily tell you that he likes the chair lifts, the sit ski and going fast. What we thought was just a rash idea to cure cabin fever has become a way of life for all of us.

Thursday, February 16, 2012

CHOP apologizes to Rivera family

The Children's Hospital of Philadelphia apologized yesterday for the way it communicated with the Riveras, who said they were told daughter Amelia (above) was not eligible for a kidney transplant because of intellectual disability.
Children's hospital apologizes to family of disabled girl for insensitive statement

A change of mind

This quote from No Ordinary Boy author Jennifer Johannesen (above with son Owen) sums up what I got last night from her BLOOM talk at Holland Bloorview.

“Your own experience of your child can improve and blossom and grow in a way that is not attached to achieving anything.”

Jennifer spoke about a shift in how she looked at Owen's disabilities: from that of high-achieving new mom who undertook her complex son's care like a 'project,' to one who realized after he died that she had stopped seeing his deafness as a disability. When she was asked to speak recently at an agency that serves children who are deaf, she at first didn't make the connection.

Jennifer -- you inspire me! Louise

Wednesday, February 15, 2012

No Ordinary Boy author launches BLOOM speaker series

No Ordinary Boy author Jennifer Johannesen launches the BLOOM speaker series tonight in the Family Resource Centre at Holland Bloorview!

Tonight Jennifer talks about society’s expectations for constant improvement, how this plays into therapy for children with disabilities, and how families can be left shouldering more burden than they want or can handle.

In the BLOOM clip above, she talks about her book as a whole. Thank you Jennifer!

Monday, February 13, 2012

My Child's Dream: To Have Friends

The Huffington Post is running this BLOOM post from last week:

My Child's Dream: To Have Friends

There is growing research showing kids with disabilities are largely friendless and that the older the kids get, the worse their isolation. The numbers are stark and I think would be cause for concern (from a health perspective) if they pertained to any other population of children.

This blog has had close to 800 pageviews at BLOOM and seems to have struck a chord with parents.

Please visit Huff Post and leave a comment if you feel inclined, or link to their story to raise awareness.

Thanks! Louise

Saturday, February 11, 2012

The kid writes

Ben was never able to write because of fine-motor problems. In the summer he began Kumon and now he can even sign cards!

Thursday, February 9, 2012

All students deserve high standards, choice

It was a treat when Ben came home Tuesday night with a course catalogue for choosing his courses for Grade 10.

He has to take math and science and history and English – what you’d expect as part of any education – but he also has some choice in non-academic courses like construction technology and drama. The courses are part of a well-thought out high-school curriculum designed by the Ontario Ministry of Education.

The reason this was a treat was that for three years we have lived in the world of ‘alternative expectations’ – read no expectations – at the segregated school Ben attended.

Alternative expectations are courses that are not tied to the Ontario curriculum and tend to focus on life skills. They include speech, social skills, personal care and transit training. At the high-school level, they are non-credit courses.

"For the vast majority of students, these programs would be given in addition to modified or regular grade-level expectations,” reads The IEP – A Resource Guide from the Ministry. “A very small number of students who are unable to demonstrate even the most basic literacy or numeracy skills may receive only an alternative report."

Although Ben does read, and is now writing, for three years he received only alternative courses and an alternative report. In his last year the courses were things like art appreciation, gym, social skills (which was a cooking class) and ‘math’ – which involved tasks like putting flashlights together.

Four courses were offered per semester. They didn’t follow the general Ontario curriculum and my understanding is that they didn’t follow any Ministry-mandated content. It was up to the school to decide what it would offer.

The value of having a province-wide curriculum, I imagine, is that if students are taught the same material across schools, to meet one set of standards, you have a way of measuring progress and ensuring accountability.

I’m not sure why the same approach wouldn’t be taken with students with disabilities in segregated schools. Why would the same thought and energy not be put into developing a standard curriculum – ideally that draws on the general curriculum all students receive?

Why is it okay for students in these segregated high schools to have no Ontario-directed course content and no choice of courses and for students and parents to simply accept whatever learning is put forward in a particular class and school?

Last night I got to go through the standard credit high-school courses with Ben, in a document (above) aptly called: Life is the sum of all your choices.

Doesn’t it seem like there’s a double standard here?

'Normal:' It's not all it's cracked up to be

We ran a condensed version of this interview, but I'm sharing the full version that appears in the winter issue of BLOOM. I think it's a powerful message for families and professionals. Louise

Dr. BJ Miller was a successful Princeton sophomore when he and his buddies decided, on a lark, to climb atop a parked commuter train; the lark turned dark when the train’s electric voltage arced to his metal wristwatch, resulting in the loss of part of his legs and left arm. As a triple amputee he went on to graduate and become a palliative-care doctor. He’s now executive director of the Zen Hospice Project in San Francisco. “I learned so much, particularly about perspective,” he says. “It’s not what you see, but how you see it.”

BLOOM: It sounds like you were someone who had everything—at least on the outside—before your accident. How did becoming an amputee change you?

BJ Miller: I was well aware that I was very fortunate in many ways when I was younger and while that was good, it was also tough. Whenever I worked hard or was proud of something, it was discounted. I couldn’t take any credit for any of my achievements—or my pain. It was a bit of a funny relief when I became an amputee because I finally had an external source of suffering. Finally people stopped treating me like the world had just been handed to me. It gave me access to humanity in a different way and that helped me. It didn’t feel this way every minute, but I worked towards it feeling like a source of good fortune. Of course it was also a source of a great deal of pain and anxiety too. I’ve had the full gamut of emotions but on balance, over the years, more good than bad has come from it.

BLOOM: What was the greatest challenge for you?

BJ Miller: In a nutshell, how to see things differently. By pulling me out of my anything-approaching ‘normal’ frame of reference it really helped me upend that endless cycle we humans engage in of constantly comparing ourselves with those around us. Am I smart enough, rich enough, skinny enough? Compared to what? That’s the question I got to open up. I was given a way to let myself off that hook and be my own frame of reference. That was extremely liberating for me and it gave me a way into self-actualization that was wonderful.

It’s still a great challenge to keep it up—to still be my own boss, to be my own gauge. As much as that’s the greatest gift, it remains the greatest challenge. A critical subtext for disability and for my palliative work comes to this issue of following one’s own gut and reconciling what the external world wants and thinks and needs from you with being true to yourself. There isn’t a pat answer to that.

When I talk to school kids they’ll say “Don’t you miss having two hands?” and I’ll invariably say “Yea, I do, but don’t you miss having three hands?” Because for me personally it’s as ludicrous to go around thinking about having two hands as it is for them to think about having three. “I don’t sit around missing them anymore than you sit around missing three,” I’ll say. This frame-of-reference issue is a powerful thing.

BLOOM: How hard was it to relearn how to do things as an amputee?

BJ Miller: It took five years of hard work before I felt truly in my body again and coordinated in a new way. I think the hardest thing remains the arm. Having two hands is way easier than one, and the hands are so important. Sure, I miss my feet, but they’re just like a platform. They’re easy to duplicate. I can get around on my prosthetic legs.

BLOOM: What did you learn about having a visible difference in our culture?

BJ Miller: I’ve learned a lot because I was suddenly snapped into being part of a minority, of being ‘the other.’ All of a sudden I embodied something that most people fear. I was very aware of this sort of repulsion that people felt. It was hard to see the terror on kids’ faces, or parents pulling their kids away from me. Or if I surprised someone, and I was wearing shorts, and they were horrified.

Sometimes it took the guise of pity, which I knew was the enemy. Sometimes the pity felt nice because old women would come up and give me $20—even when I was in medical school! It definitely was hard and I had to really concentrate on sticking my chin out when I walked out of my bedroom to face the day.

The fascinating part was that about two years after the accident I noticed people’s reactions got a little better. And after five years I noticed a big difference. I must have carried myself differently. At first, I’d drive like a mad man and get pulled over by the cops and they’d take one look at me and let me go. Or if I was flying, I’d be bumped up to first class every time and they’d sneak bottles of wine into my bag. But then that just stopped. Did I reach a new level that I didn’t trip up these responses in others, or had society evolved?

BLOOM: What assumptions do people make about you?

BJ Miller: Back in 1990 I was treated as a Frankenstein figure or a Christ figure and it was ridiculous at either extreme. Sometimes I got congratulated for going to the bathroom. Then somewhere along the way amputees seemed to bust out and a handful went out and did extraordinary things—competing in Iron Man triathlons—and the expectations changed: if I didn’t climb Mount Everest, I had failed.

Whether people expect too much out of me or too little I still have to learn the skill of protecting myself against false expectations. I worry that my life has been summarized in the media as one of extraordinary achievement. I won’t argue that some really good stuff has come from it and I’m glad for the things I’d done, but I haven’t done those things out of ambition or the need to be Superman. I’ve done them just to be true to myself and the possibilities in front of me.

BLOOM: How did you cope in the early days?

BJ Miller: I was full of pain and fear. But I can’t tell you how important it was having grown up with a disabled mother. For much of my mother’s life she used an electric wheelchair and being in the world with her, I vicariously learned a ton of the things we’re talking about. As a child I was sensitive and a little worried: ‘Gosh, I’m lucky in all these ways and could I even handle it if I had a disability?’ So I was coming from a different place when I became an amputee than most people. I loved my mother so much and was aware of the way the world treated her—and yet I didn’t want to collapse into hating life. These issues had been rumbling around in my head for a while. I didn’t wake up on day one and see my situation as a great challenge. But pretty soon I was aware that it was that—a great challenge. I knew that and I had to live it.

BLOOM: Did friends stick with you?

BJ Miller: There was only one friend who just couldn’t handle it. He couldn’t really even look at me because it was too painful for him. He wasn’t mean, he just sort of disappeared. But for the most part people stuck by me and that’s because I had really great friends and a lot of my friends were close with my parents and had learned from my mother’s experiences.

BLOOM: Doctors typically rate quality of life in people with disabilities very low. How would you rate your happiness with life now compared to before your accident?

BJ Miller: I would rate my quality of life as better. For all the reasons we’ve discussed—for all of the internal resilience it’s fostered in me. And also at some point I would have to say that people with disabilities have to learn to get into it and embrace it. I love my prosthetic leg. I love playing with it and it’s that playfulness that is so critical—you not only accommodate your disability but you really celebrate it and get into it. At that point you’re not operating from a sense of deficit anymore. However you get to that point is key.

BLOOM: Do you have a personal philosophy that helps you see things with perspective?

BJ Miller: I’ve only read the Serenity Prayer a couple of times but I’d have to say that it registers with me. Teasing out what you can control from what you can’t control—I can’t think of a better skill to acquire as a human being than that. Because whether or not you qualify as disabled, life is full of pain and difficulty. Even if you have all the perfect circumstances, at some point Mother Nature will insist upon certain things from you, like your own death. You can’t change the things you’re looking at in so many ways, but if you’re going to use your energy, put it into how you see.

BLOOM: Why did you become a palliative-care specialist?

BJ Miller: Because all of the things I’ve learned to get through my day seem to have broader relevance for people dealing with various themes of suffering. Suffering is a unifying human bond and it comes in many stripes and colours. And even if you have a perfect life you still have to say goodbye to it at some point. I love finding and working from the common denominator—and suffering and mortality are the most thorough.

After med school I thought I would go into rehab medicine but when I did a rotation in that I was turned off. It seemed to be a very mechanical field, while a lot of what we’re talking about has to do with the transformational powers of coping with disability—that there’s this raw material for transformation and growth and interest.

The goal in rehab seemed to be to get back to where you were before the injury and that to me was fundamentally flawed. Generally it’s not possible, but more importantly, why undermine and cut yourself off from all the beautiful stuff that comes your way when you embrace differences? I’m sure there’s a balance to be struck with therapy, but overall, celebrating differences—especially the ones you can’t change—is a better way through, if you ask me.

BLOOM: Some people might imagine that working with people who are dying is negative. Is it?

BJ Miller: You have to watch yourself. Sometimes it’s hard to strike a balance. But for the most part I see much more beauty in it. And it’s not beauty because of the absence of pain. It’s beauty because of how we respond to pain. If I could push a button, and all the pain would go away, I’d push that button. But since it doesn’t exist, I want to see how people foster a way of thinking that’s creative in response to the things we can’t control. To me that’s much more beautiful than horrifying.

BLOOM: What advice would you give parents of children who won’t meet conventional markers of success?

BJ Miller: I don’t presume to know exactly what that feels like. I wouldn’t try to convince parents not to worry, or not to wish that their child had an easier go of things, but I would say over time spend your energy on finding things to celebrate in your child’s differences. Turn your attention toward the differences, instead of away from them, and who knows what will come— either lessons, or some weird new talent. Divorce yourself from the typical measures of success in life. It’s a harder road, but a way more fulfilling one.

I have a window into the inverse of this in my work. I see people all the time who do have a ridiculous wealth of conventional success and there’s a lot of misery in there because they’ve never embraced their own internal metric, they’ve never done their own homework. Part of getting there involves letting go of the idea that ‘if I just had this or that’ or ‘if I just looked like this or that’ things would be perfect. In fact, it’s my experience that it’s the opposite.

BLOOM: What have you learned in palliative care that might have relevance to people living with disability?

BJ Miller: Suffering is normal—though you may keep it at bay—and time is precious. And to squander time trying to be someone you’re not isn’t generally the best use of time. I spoke at a rehab hospital and I challenged them to take the field beyond the bullshit around ‘normalcy’ and to embrace the emotional, conceptual, philosophical and transformative issues that are smack in front of their faces.

The mechanical side of rehab needs to be complemented with developing the individual’s mind to embrace life rather than feel the need to change it into something it’s not. When I look back on my rehab process I’m glad I did it and it was useful for me. But I didn’t pretend that what they were offering was a comprehensive, therapeutic response. I took it for what it was— mechanical—and I had to get the philosophical and emotional pieces elsewhere.

Photo by Brant Ward/The San Francisco Chronicle

Tuesday, February 7, 2012

Social world shrinks as disabled kids grow

Soon after our son Ben was born, a geneticist gave us the news that our baby had a greater than 50 per cent chance of having a rare genetic disorder. After listening to a vague description of potential bone and development problems, and clinging to the stat that 25 per cent of these kids were intellectually 'normal,' my husband asked, through silent tears: "But will he still be able to run and jump and play with his friends?"

At the time, we didn't question that Ben would have friends.

We didn't know that being friendless was the norm for kids with physical and intellectual disabilities.

I really DON'T want to write this post.

I don't want to believe that my son will never be able to develop friends naturally because he can't speak, looks different, can’t keep up physically or intellectually with his peers and does things that aren't 'cool' for his age.

But in the last few weeks, the evidence outside our own personal experience has been mounting, and continues to slap me in the face.

It started with a British study -- aptly named Does Every Child Matter? Researchers followed children with disabilities and their families through interviews and observation for 32 months. One of the key findings was that parents face huge pressure to 'make their child normal' and when they aren't successful, the child and family are excluded -- from friendships, at school and in the community. The biggest barrier to participating in sports or community activities was not access or transportation, but attitudes. Children participated in segregated community programs, researchers found, because they had no other choice. At school, they were segregated because of the requirement to be 'able' and to develop typically, and because special-ed policies have placed the 'problem' of disability within the child, instead of within the disabling environment, the scientists said.

Then there was the Holland Bloorview research that showed teachers and students alike shut out kids with cerebral palsy in regular classes. "The kids act like I am invisible," one participant said. And it's not just the children. A teacher turns off a student's communication device, rendering the student silent. Another teacher refuses to allow a child to have a bathroom communication button -- so the child, toilet-trained, must wear diapers. The reason? The button would disturb other students.

And the final nail in the coffin? In Dr. Anne Snowdon's recent study of 166 families in three Canadian cities, more than half of children with physical and developmental disabilities have no friends or only one friend. Only 1 per cent spend an hour a day with a friend.

Can you imagine the outcry if any other population of Canadian children was found to be this isolated and alone?

Reporting on Snowdon's study, André Picard writes in The Globe and Mail: "In childhood, efforts are made, but by the time kids hit age 10 or so, when cliques and social circles form outside of parental control, ostracization and isolation is near complete."

According to a U.S. National Institutes of Health funded study in Ontario, the teen years are particularly difficult. While peers become involved in a growing array of activities that widens their social network, teens with disabilities tend to stick with the same activities, often with family members.

Ben wants friends. I used to love watching him stand as a small child at the window, signing, "Friends, where?" as we waited for the birthday party guests to arrive. When he was younger, he had some authentic friends. In particular, students rose to the occasion at an alternative elementary school he attended that had a philosophy of promoting diversity. There was Adaku, a girl who was fascinated with sign language, came for play dates and regularly spent time with Ben. She read his poem about a gorilla at a school function.

There was Eli (back photo above). One day another student questioned Eli about his friendship with Ben, and Eli responded by saying: "Ben? He's one of my best friends" and put his arm around Ben's shoulders.

But things got trickier as the kids moved into puberty: they were now twice the size of Ben, who has a form of dwarfism, we still hadn't found a reliable way for Ben to communicate, and he couldn't keep up intellectually or socially. He had one good year at the Metro School for the Deaf -- a segregated program within a regular elementary school. The kids were fond of him, he occasionally had students over, and he liked the kids who rode his bus.

Friendships didn't materialize at his segregated high school 40 minutes away: all the students were bussed in and lived in different parts of the city. If you invited kids to a party, parents never RSVP'd and often the kids didn't show. Ben's school reports indicated that he had no contact with the other students -- which was hard for me to believe, because he is sociable.

I have a meeting at Ben's mainstream school in a week and I want to know whether he's made any progress socially there. He doesn't get phone calls or texts with constant requests to go out like the rest of my children. His weekends are free. He still doesn't have a way to clearly communicate with people, which seems to be the basis of all friendship. He does have guts. He was the only student in the deaf and hard of hearing program who went to the school's Halloween dance (with his worker Marjorie). Apparently some girls asked him to dance. When we did his life plan, I wrote out about a dozen possible dreams for the future, and he immediately scanned through them and pointed to "have friends."

I read the comments posted on media stories about research showing exclusion of children with disabilities. Many have disturbing, although predictable, themes: You can't 'force' a child to be friends with a disabled child; Parents should have aborted their kids so they didn't have to experience this misery; Why would a child invest time in a disabled child when he or she could get so much more from a typical child?; Any relationship between a disabled and typical child involves charity on the part of the 'regular' one.

If the parents and brothers and sisters of our children have meaningful relationships with them -- why can't anyone else?

No Ordinary Boy author Jennifer Johannesen and I were discussing this the other day. She pointed out that although workers had authentic relationships with her son Owen, she had to pay them to spend the time with Owen -- time that was necessary to get to know the boy inside.

And perhaps that is the bottom line. It takes more time than any teenager is willing to spend to get to know our kids, who are often locked in bodies that limit self-expression.

I didn't want to write this article. But when I came in today, I read this blog entry by Ben's worker Marjorie: 'It's fine, I don't care.' It's about a Super Bowl party one of her adult clients organized. Most of the friends he invited from college didn't come. "It's fine, I don't care," he said.

Marjorie writes: "I once took a small conference with David Hingsburger, and he said something I will never forget: 'You will always be more important in the life of someone with a disability than they are in yours.'"

I'm assuming Hingsburger was referring to how few friends disabled youth have compared to their peers -- which would mean that any friendship is more valued by them.

But it really bothered me, reading that quote. It suggests that the person with disabilities always has less to bring to the relationship. Which is wrong.

The whole topic of youth with disabilities and social isolation makes my blood boil.

Monday, February 6, 2012

This and that

After trauma: Why me? An interesting response to a parent of a child with disability from Daniel Gottlieb, a quadriplegic after a near-fatal car accident and author of two books about his relationship with a grandson who has autism.

Thursday, February 2, 2012

Shoes till spring?

In what is being described as Toronto's 'non-winter,' the kid has yet to don his winter boots and we've hit February!

Boots are always a challenge for Ben because he can't wear his orthotics in them and they don't have a lift to even out his unequal legs. So walking is precarious, particularly in icey and snowy conditions.

We've only had 12 cm of snow since November -- far below the usual load of 56 cm we get -- and what snow we have had has been light and quickly melted. In fact, we've had more rain than snow this season and the streets and sidewalks are bare.

Ben takes a cab to school but has to get up and down our 29 stairs, which is already an effort in well-supported sneakers.

I cheer every morning we wake to clear streets and no boots and wonder whether our record will extend through to March.

In other news, Ben's cab driver told me yesterday that he's no longer using his walker at school (the cabby carries one in his trunk, and we have another one that rides in our van -- kind of like an extra kid!)

Here are a few interesting links:

I had Asperger syndrome. Briefly. in the New York Times.

The big bad

One day at a time: Parenting adult special needs

Caring for a sibling with developmental disabilities can be a lifetime commitment

Wednesday, February 1, 2012

New autism definition makes sense, a clinician-scientist says

Media reports about changes to the definition of autism have led to fears that some children would no longer meet criteria to get services.

An expert panel of the American Psychiatric Association is proposing a change as it prepares the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders (DSM) – the first major revision in 17 years.

I interviewed Dr. Jessica Brian, a clinician-investigator in the Autism Research Centre at Holland Bloorview, to learn more.

BLOOM: What are the proposed changes?

Dr. Jessica Brian: The proposed changes are to have a single term – autism spectrum disorder (ASD) – that includes children who would previously have fallen into one of three categories: autism, pervasive developmental disorder – not otherwise specified (PDD-NOS), or Asperger syndrome. They’re also talking about collapsing the idea of social deficits and communication deficits, since there are so many overlaps between the two. There will not be a single category for social deficits and a single category for communication deficits but one category called social communication. In that category you have to meet criteria on all of the items but the items are extremely broad and inclusive.

BLOOM: Are there advantages to the old system of three definitions?

Dr. Jessica Brian: Not really. Currently there isn’t evidence to support this distinction between three sub-categories. Most of the research out there doesn’t find differences in terms of genetic susceptibility – so the three sub-categories seem to have the same genetic basis. That’s why you’ll find a family where one child has Asperger’s and one child has autism. And prediction of outcome isn’t supported by the three distinctions. When we follow kids in research we find they typically stay within the spectrum, but they move up or down in terms of whether they meet the full criteria for autism or the fewer criteria for PDD-NOS. We don’t think of them as separate disorders, but as different intensities across a continuum. In my clinical work, the distinctions between the sub-categories can also be confusing for families.

BLOOM: I’m surprised, because I thought diagnosing a child with autism was more precise?

Dr. Jessica Brian: If you have a room full of autism experts seeing one child, they will usually agree that the child fits somewhere on the autism spectrum but there will not be good agreement about which sub-category. It is challenging to identify exactly where a child sits on the autism spectrum and that’s what’s prompted these recommendations.

BLOOM: Are there any other advantages to having one definition?

Dr. Jessica Brian: We think one definition could expedite the assessment process, because we won’t fuss about whether the child has PDD or autism, we just know they have ASD and we can move them into services more quickly.

BLOOM: I know there’s been concern by parents that higher-functioning children will no longer qualify for services.

Dr. Jessica Brian: In Canada it’s extremely unlikely that kids with existing diagnoses would ever be re-diagnosed unless parents specifically want it and seek private assessments. There aren’t the resources in the public system to re-diagnose these kids. So the fear of losing services is unwarranted, at least in Canada. I know people in the U.S. are worried about losing insured services but I have to ask the same question: Who is going to reassess all of these kids?

BLOOM: What about findings that are reported to show that only 45 percent of the highest-functioning kids would qualify for the new diagnosis?

Dr. Jessica Brian: That’s just one piece of preliminary evidence that hasn’t been published yet. A study published in January found that 12 percent of higher-functioning individuals might be missed by the new criteria, but if only one criterion was removed, almost all kids would be included. It’s important to note that we have to find ways to provide necessary services to kids who have needs even if they don’t meet full criteria for a diagnosis. Some kids will still need communication or social or behavioural supports even if they don’t get a diagnosis of ASD. We need to keep this in mind and keep pushing for needs-based access to services.

BLOOM: Is the broader definition positive in that children aren’t as pigeon-holed when they’re first diagnosed?

Dr. Jessica Brian: Yes, we can say that they will most likely stay on the autism spectrum, but developmental changes are very possible.

BLOOM: I guess there will be some resistance to the broader definition?

Dr. Jessica Brian: According to the proposed changes, the term Asperger won’t be used in the DSM. But I suspect there will be a strong group of people with Asperger’s who self-identify that way and I would expect that that term will remain alive among individuals who have those characteristics. There is a culture of Asperger’s that we won’t lose anytime soon. It’s a badge of honour, a characteristic many people are proud of.

BLOOM: It doesn’t sound like the change in definition will have a significant impact on our work here?

Dr. Jessica Brian: We’ve been using the term ASD for many years even though it’s not in the DSM4. And the reason we’ve been using it in research and clinical settings is because we’re aware that those sub-distinctions aren’t always that helpful or meaningful.