Bon voyage

Hello dear readers:

I will be on holiday until August 1. We are taking a "staycation," but hope to rent or purchase some kayaks so we can at least get some time on the water locally.

I may post a couple of updates during our break.

In the meantime, let us know what you have planned for the summer. Have fun! Louise

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Does disability make you a less worthy transplant recipient?

Two little girls with genetic conditions that include intellectual disability needed a life-saving organ transplant.

One, in Philadelphia, needed a kidney. The other, in Chicago, needed a heart.

The first, three-year-old Amelia Rivera with Wolf-Hirschhorn Syndrome, was turned down for a kidney transplant in 2012 because of her ‘mental retardation,’ according to her parents. “She is not eligible because of her quality of life—because of her mental delays” the parents said a nephrology doctor told them.

Special-needs parents lit up the blogosphere in protest and over 50,000 people signed a petition at change.org asking the Children’s Hospital of Philadelphia (CHOP) to reconsider its decision. All the major media networks ran news stories on the case and CHOP reversed its decision. Last year Amelia received a kidney transplant from her mother and is thriving.

The second girl, a baby dubbed “Annie Golden Heart” on a Facebook page run by her parents, had Down syndrome. She was in heart failure, but was ineligible for a new heart because of her disability. Last week, she died at age two. Despite her Facebook page, Annie's story didn't garner the media clout to influence hospital policy like Amelia's had. I wonder how her parents explained her death to her two older sisters?

This change.org petition questions why children with Down syndrome are not considered candidates for organ transplants. It has almost 40,000 signatures, but it hasn’t caught the imagination of the media.

Last year CNN reported on a five-month-old baby with a heart defect who was okayed for a heart transplant, only to have this decision reversed two days later when it was discovered that the child had a genetic condition. The doctors said his genetic condition compromised his immune system, making him a poor candidate for transplant, and told the parents to take him home and love him till he died. His mother went online and researched the syndrome, reading studies and contacting the expert her son's syndrome is named after. The study authors and the expert said that the condition is not associated with immune problems and is not a reason to deny the child a transplant.

The syndrome is, however, associated with intellectual disability and there’s a long history of categorically excluding people with intellectual disability from eligibility for transplants; they’re not seen as worthy of these scarce resources.

The Autistic Self Advocacy Network has published an excellent toolkit on transplant discrimination based on disability.

In its Guide for Clinicians the authors note that “the most common barrier is the misconception that people with disabilities—especially those with intellectual, developmental, or psychiatric disabilities—are unable to comply with post-operative treatment regimens and that, as a result, people with disabilities have a lower likelihood of transplant success. In addi­tion, providers may incorrectly assume that people with disabilities have a lower quality of life than people with­out disabilities and therefore would not benefit as much from life-saving transplants…”.

The guide includes recent studies that show that with adequate post-surgery care, people with intellectual disabilities have survival rates for kidney and heart transplants that are comparable with those in the general population.

The guide includes case studies, like the one of a 9-year-old boy with autism who needed a heart transplant. Two transplant centres refused to even evaluate the boy, who types to communicate, based on his disability.

In its toolkit on transplant discrimination, the Autistic Self Advocacy Network says that “as early as 1992, the U.S. Department of Health and Human Services took the position that deeming people with disabilities to have a lower ‘quality of life,’ and refusing health care on that basis, would violate the Americans with Disabilities Act.”

It goes on to say that “Clinicians’ estimates may, as a result of their own ‘horror of handicap,’ dramatically undervalue the actual quality of life of disabled patients. In reality, people with significant developmental and intellectual disability—including those who need assistance with basic tasks, those with co-occurring physical disabilities, and those who do not communicate using language—may lead long, rich, and fulfilling lives in their communi­ties. Moreover, patients with disabilities who received or­gan transplants may experience marked improvements in quality of life.”

Ironically, two days before “Annie Golden Heart” died last week, a state lawmaker from Philadelphia introduced legislation to end discrimination against people with disabilities in need of organ transplants. The bill, spurred by the fight of Karen Corby, whose 24-year-old son Paul, with autism, needs a heart transplant but isn’t eligible, is called Paul’s Law. “...To find out that he is not a candidate for a heart transplant—which is the only cure—because he's autistic, is the most terrifying thing a parent can go through," Karen Corby said.

Last year, Dr. Art Caplan, a bioethicist writing for MSNBC online summed up the situation beautifully: “Children with intellectual disabilities do not appear on transplant waiting lists with the frequency that should be expected…There are reasons why anyone with an intellectual or physical disability might not be considered a good candidate for a transplant. But those reasons, to be ethical, have to be linked to the chance of making the transplant succeed. Otherwise they are not reasons, they are only biases.”

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The wave



Remember that quote: "Enjoy the little things, for one day you may look back and realize they were the big things?"

Well, here's one of my little things.

Last night we were at Variety Village, the sports club adapted for people with and without disabilities.

Ben was riding a bike around the track at a very leisurely, almost snail-like pace while my hubby (and I, very briefly) ran.

I was thrilled when I saw an old school friend of Ben's coming towards us on the inner lane, walking. We were going in opposite directions as lanes on the track are designated for different activities.

He's a young man with autism who uses sign language to communicate. He had head phones on and was snapping his fingers to the music.

We met him a couple of weeks ago, having not seen him for about four years.

Sometimes Ben doesn't respond to greetings, particularly if he's doing something like walking or riding that requires him to concentrate on his coordination.

As the young man came nearer, he waved to Ben, and gave him the thumbs up. I was a several feet behind Ben, and I saw him balance his left wrist on the handlebar and very intentionally wave back.

"Did you see that?" I said, turning and gesturing to my husband. We smiled and I jumped up and down, like we'd just experienced a tremendous bit of luck.

What's a little thing in your life (or perhaps in the eyes of other people) that in fact is a really big thing?

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Everything you want to know about siblings

Last year Dutch journalist Anjet van Dijken published the Brothers and Sisters Book, a first in Holland for siblings of children with disabilities, chronic health conditions and/or mental illness.

Anjet, 38, grew up with an older brother Jalbert, who was born with a visual disability and autism due to exposure to a parasitic infection during his mother’s pregnancy. In her book, Anjet interviews 36 siblings aged six to 69. Her goal is to let all siblings know that they’re not alone, their thoughts and feelings matter, and that they must pursue their own dreams to be happy. Only then can their relationship with their brother or sister as an adult "come from the heart, rather than feel like a must-do obligation," Anjet says.

Look to the September issue of BLOOM magazine for a full interview with Anjet. Here, we include her advice for parents raising a child with disability and their siblings.

BLOOM: What advice would you give parents?

Anjet van Dijken: My general advice is: Accept the situation with your child with a disability as it is, as soon as you can. Don’t stay in the fear and guilt. Very, very easy to say, but really—there are no other options. Fear is the worst guidance in life. It is toxic for the whole family. So try and work on acceptance every day, and do not hesitate a second to ask for assistance.

• Look for ways to help yourself. You have to fill yourself up in order to be able to give to your children. Acceptance is also accepting that you can’t do something anymore, or that it’s hard. Your family needs support, some outside eyes, to make sure you’re doing enough for yourself. Connect with other parents of children with disabilities or find a therapist who has worked with families like yours. You need help to learn how not to be so worried or so hard on yourself, so that you can be open to your other children.
• Try not to be too hard on yourself with choices you make for your child with disability. You’re always being judged, no matter what you do.
• Isolation is the biggest threat to a mother and father. If I had a baby with a disability, I would phone my friends and say: ‘We’re making a date in six months and we’re going out. Even if I don’t want to, you’re taking me out.’ Understand that because having a child with a disability is like learning to adapt to a new culture with new rules, your friends who don’t have this experience will not understand you. Try not to blame them.
• Accept help. Maybe a neighbour who loves your child and sees your child for who he is will offer to babysit. Parents always say ‘No, I can do it on my own.’ ‘I can do it on my own’ is the worst thought you can have, because at some point you won’t survive your child.
• Future planning is important. I’m very proud that my mom made the decision for my brother to go to a home and she stuck to it. Having a decision gives the whole family an ease.
• Know that at different times you won’t always be the best person for your children to talk to about their relationship with their disabled brother or sister. Look for ways to connect your children with other siblings (support groups, books, through your children’s rehab centre).
• If your child goes to a school or daycare for children with disability, ask the school if they can do a day for the classmates’ siblings. Maybe there’s a girl that your daughter clicks with and she writes down her e-mail address and they keep that bond.
• Be aware of how much you ask of your other children. If you ask a sibling to do something, they’ll always immediately say ‘yes.’ After the birth of my son I couldn’t figure out why I didn’t enjoy feeding him. And then I had a flashback to when I was little and I always had to help my brother finish his plate. I’d forgotten about it, and I’d never told my brother that I hated it. I was taught not to talk about my emotions and it only came out after I was 30.
• Try to have open communication. When writing my book I noticed that the positive life stories for siblings were when the parents would sit down after dinner and talk about things openly and everyone had a right to speak their own mind. But you can’t have open communication when a father or mother is overcome with fear or guilt. That’s why parents need to get support for themselves. Dr. Tinneke Moyson, who has researched quality of life in siblings, says that open communication in the family is the most important thing.
• Help your children develop their dreams. When your son does something out of the ordinary, or says ‘I really want to do this,’ and it has nothing to do with the disabled sibling, be proud.
• I loved music and when I came home from school my mother would be ironing and she’d have my house music on. She’d be enjoying it and I felt that I had inspired her. Not because I was such a good carer for my brother, but because I had picked up something I liked and it made her happy.
• A lot of siblings say they’ve had so much praise for their good behaviour and that’s part of the problem. They feel they can’t live up to that standard, so they feel a bit of a failure. Other than being given the role of the good child, they’re often not stimulated in other areas. They never learn to diversify. Emphasize other things in your child’s character, not just that they’re attentive or helpful. Sometimes they don’t like helping!
• Siblings mimic how their parents deal with situations. They react not just to what you say, but what they feel. If you’re sad, but you’re trying to hide your emotions, the child will try to do the same. But the child comes to believe ‘My emotions don’t count.’
• Think about what other people would do in your situation, or ask a friend or your child’s teacher for advice regarding your children who don’t have disabilities. ‘What is your view of my son? How do you think he’s doing?’ If you’re absorbed by problems, it’s hard to observe what’s happening in your other children.
• A researcher said that a lot of parents of children with disabilities think that the normal rules of parenting—like giving each child the attention they need—don’t apply anymore. But it’s not only the disabled child who needs to be observed. It’s the other children too. It’s good to get back into that normality. It’s not so much the amount of time you spend with your other children, but thinking about them, observing them.

Anjet can be reached on Twitter @jetalerte. Her book is currently available in Dutch but she would love to hear from parents who would like it translated into English. Anjet runs a Facebook group with almost 100 siblings aged 14-50 called Brother and Sister.

Other resources:

Sibling Support Project

Sibling Leadership Network 

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Know the Night is about a mother's isolation

Maria Mutch is awake. It’s 3 a.m., or maybe 4, she’s not sure—she can barely tell the difference anymore. She wanders the halls of her house slowly, quietly. While the rest of her family sleeps, Maria is a ghost. There’s no point in going back to bed. Any minute now, she anticipates that her eldest son Gabriel, who was born with Down syndrome and later diagnosed with autism, will wake up and begin his nightly babbling.

Gabriel is non-verbal and restless. He’ll cackle, or cry, and his shrieks and stomps will vibrate through the hallways, piercing the thick silence of the night. Maria—refusing her husband’s offers to help—will have to get up and calm Gabriel herself. So for now, she walks. She’s used to it, after all. The same thing happens almost every single night. It’s 2009, and Maria has been sleepless for nearly two years.

Today, five years later, Maria reflects on those long, sleep-deprived nights in her first book, Know the Night: A Memoir of Survival in the Small Hours. The book chronicles her experience caring for her son during the two years that Gabriel lived with a sleep disorder.

The book opens when Gabriel is 11. By then, he has stopped speaking. While he developed a small vocabulary as a very young child, by the time Gabriel turned five, he’d begun to lose most of the words he’d learned. By seven, he’d stopped speaking completely. The last two words he uttered were, poetically, “All done.”

Gabriel’s speech was replaced with outbursts of emotion and energy, and nightly marathons of screaming, laughing and slamming around in his room. “It was difficult because he was very affected by repetitive behaviours at that time,” Maria says. “He was very hyperactive and he did a lot of shrieking and bouncing in the middle of the night.”

Maria, her husband Robin, and younger son Sam sometimes communicated with Gabriel through jazz music, which he loves. The family often went to see local musicians, and in the small, sweaty bars, Gabriel found connection to the musicians and crowd when he bounced along with the music.

But back at home in what Maria calls the “small hours” of the night, she and Gabriel were often alone. She refused her husband’s offers to help, insisting on taking “ownership of the Odyssey.” Gabriel, his energy, his loss of words—they all seemed a mystery to her. Through her exhaustion and frustration, Maria struggled to understand Gabriel, and slowly began to make new discoveries about herself, the night, and the complexities of her son.

At the time, Maria was fascinated by the stories of explorers, and took particular solace in the journeys of Admiral William Byrd, who, in the 1930s, spent months alone in a hut in the Antarctic. In Know the Night, Maria weaves Byrd’s stories in with her own, and draws parallels between their mutual desperation and nocturnal isolation—as well as the profound beauty each of them find in the still loneliness of the night.

For Maria, Know the Night isn’t an “autism memoir,” but a piece of creative nonfiction that explores the isolation that both she and Gabriel faced at times. In this way, Maria feels that even those who haven’t cared for a child with disabilities can relate. 

“It doesn’t matter where you are in the world, or what time period, that thing we all know is isolation,” she says.

She is also quick to point out that the book is about her own experience, not Gabriel’s. “I don’t look at it as writing for him because I’m very careful about making too many assumptions about Gabriel’s experience,” she says. “One of the things I want to protect with Gabriel is his autonomy.”

After two years, Gabriel’s sleep disorder passed. She and Robin still aren’t sure what changed their son’s nighttime habits. At some point, the screaming and bouncing stopped, and he just started sleeping again. As Gabriel slowly settled back into normal sleeping patterns, Maria began to write about her experience. She crafted a series of essays, then linked them together into a larger narrative. At first her reflections on her experience left her with a feeling of hostility.

“I was hit by a residual anger,” she says, “because I started getting rest and was reminded of what everybody else who sleeps normally gets to experience.”

Maria encourages parents who are caring for a child with disabilities who has difficulty sleeping to carve out time for their own self-care, and says that if she could do her two sleepless years over, she would have relied more on her spouse and advocated for her own rest. Most importantly, Maria says, parents shouldn’t try to do it alone.

“My husband and I hid the extent of what was going on. But you have to find some people in your circle that you trust, and that you can rely on for support.”

 ***

Today, Gabriel is 16. He still loves jazz, and in the mornings, Maria and Robin will set his iPod on shuffle and let the frantic, emphatic disjointed sounds fill the house. Thelonius Monk and Ella Fitzgerald and John Coltrane roar and whine and bawl out of the speakers. Gabriel sometimes still grooves along with them, but his body is more contained. His development has stayed the same for years, but in his movements, Maria sees a new maturity.

Mornings are easier now. Gabriel sleeps through the night, and is calmer during the day. While he still has some behavioural issues, he no longer wakes and shrieks the way he used to.

Moving forward, Maria says that as she wrote and reflected on her relationship to her son, she has learned to focus more on Gabriel’s enjoyment. “There’s a lot of pressure on parents to solve their kids’ issues. So we go through all these therapies, we read a ton of books. We go around the clock and it’s exhausting,” Maria says.

“We tried everything and now what I want for him is to have a great time. There’s no reason to feel sorry for Gabriel. He has a great existence. I want him to have a great life,” she says.

“And he does.”

Written by Megan Jones. Gabriel is pictured below.

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The balancing act: Children's rehab is about truth and hope

Dr. Anne Kawamura is a developmental pediatrician in Holland Bloorview’s child development program, working with children with cerebral palsy, autism and other developmental delays. She was hired 10 years ago after completing her fellowship in developmental pediatrics here. In addition to her clinical work, Anne directs the University of Toronto program for pediatricians who train for two years to become specialists in working with children with disabilities. She has three children of her own.

BLOOM: What led you to working in children’s rehab?

Anne Kawamura: A lot of it stems from the fact that when I was in medical school I had a chance to work with children with autism. As part of a research project with Dr. Wendy Roberts I went into the community three days a week as a volunteer to do intensive behavioural intervention with two young boys. It was really hard and I didn’t know what I was doing, though I had some basic training.

The greatest part was just having the connection with both of these kids and to see that even though things were really challenging for them and their families, that you can build a relationship with these children. That was very meaningful for me. People often misunderstand that. You can really get to know a child with autism and they can get to know you in their own way.

I also felt firsthand some of the judgment that families experience. One of the boys banged his head and once he was so upset he gave himself a black eye. I took him to the park and people looked at me, with a child with an injury, as if he’d been abused. I got a sense of how it felt to be in the parent’s shoes.

BLOOM: What is the most challenging part of your clinical work?

Anne Kawamura: I think the hardest days are when families ask me really hard questions, like ‘will my child walk or talk?’ and I know the answer is that the child may never walk or talk. They want something and I can’t give it to them. It could be certainty or a guarantee, or even that they want more therapy, and we don’t offer that level of therapy.

BLOOM: When a parent has a question about a child’s abilities in the future, how do you address that in a helpful way?

Anne Kawamura: You have to balance being truthful about what you know about the condition with hope, and leaving room for change. There have been times when I’ve been really surprised to see what the outcome is. When I was first working here I was on the brain injury team. I’ve seen some really dramatic changes there that I wouldn’t ever have been able to predict. So it’s important to leave the door open.

BLOOM: When I speak with medical students they often ask how they can convey difficult news to a parent in a way that won’t be upsetting, as if there’s a ‘right’ way of doing it.

Anne Kawamura: You can’t follow an algorithm. I see that with our fellows who want to know the right way to approach this.

One of the most important things we need to teach is that it’s a conversation that goes back and forth. You never know what will come back from the parent, so you need a great deal of flexibility.

There’s no perfect way of giving a diagnosis, there is not. And you can make mistakes, you can make a misstep, but the idea is that you can recover from that. You can back up and redirect and reestablish a good connection with the family.

BLOOM: What advice do you give fellows when giving a diagnosis?

Anne Kawamura: I try to teach them to find the strengths in every child, and to focus on those strengths. But they have to truly believe the child has strengths, and to help the parents see those strengths if they don’t already. When you interact directly with a child during an assessment you get a sense of what they’re doing really well, and how those things may help them in moving forward in an intervention or in their day to day life. Focusing on strengths is important in providing a window of hope.

BLOOM: I think it must be difficult for fellows to learn that what’s helpful to one parent in conveying a diagnosis may not be helpful to another, because each parent is so unique.

Anne Kawamura: My gut feeling as a health professional is that when someone is upset or suffering I want to fix it. And some of the most useful feedback is that we don’t need to fix it, we may not be able to offer parents something that changes how they’re feeling. We just need to be there. To listen. To acknowledge how challenging it is. To be an ear. The most important thing is that it’s okay to take the time to really hear where the parents are at, to give them an outlet to express how they’re feeling.

Something exciting we’re doing is running a new simulation program so fellows can practise giving a diagnosis with a standardized patient. We have a family leader who has a child with autism who’s been part of building these practice scenarios and giving feedback to fellows. It’s been amazing having this parent’s perspective.

She can tell us how things felt for her as a parent, and how we could have done something differently. I don’t have a child with autism, she does, and having that perspective is really important. The other important thing is practice and learning how to navigate situations.

Part of why I enjoy what I’m doing is that it’s always a challenge and there’s always more to learn. I’m always thinking back to what I could have done differently to make things easier or better. We’ve done two sessions of simulation so far but we hope to be able to offer it to our fellows regularly during their two years of training.

BLOOM: Have your views about disability changed since you began 10 years ago?

Anne Kawamura: When I first started out I wanted kids to get as much therapy as possible. We all have that notion that more therapy is better. Over the years, through talking with colleagues and seeing a lot of kids, I see that there are other equally important things in life, in terms of going out with your kids and playing, having fun with your kids.

I try to talk to families more about seeing their whole child, not just focusing on one thing, like walking, but to focus on the other aspects of their child’s life where they’re doing well and where they also need support. I try to help them focus on all aspects of their child’s development.

BLOOM: Have you seen any changes in children’s rehab?

Anne Kawamura: I think there’s more emphasis on participation, even in the research realm of things. Before, we were focused on ‘what’s wrong,’ for example, treating the stiffness in the muscle. Now we’re still treating the stiffness in the muscle, but we’re more interested in how treating it influences what the child can do, how they participate in an activity and their quality of life.

BLOOM: I assume your job is stressful because supporting families takes time, but your time is limited?

Anne Kawamura: Peggy Curtis is the nurse I work with and we work really closely together. We have a schedule and demands to get our wait list down, but we try to make it work each day, one step at a time. We never know when a child and family will need more time, and we want to be flexible to meet the needs of the families coming that day. So if someone needs more time, we figure out a way to make it work, even if it means bringing them back for another visit.

BLOOM: What are your hopes for the future?

Anne Kawamura: Right now in addition to my clinical work I’m doing a lot of education overseeing our program for pediatricians who are training to become developmental pediatricians. I’m also doing a master’s in Health Professions Education, which I do long distance through the University of Illinois at Chicago.

I love what I do and I don’t ever want to leave the clinical side. I like working with families and the kids I get to see and follow up over time. To see them growing, changing and maturing is the part I enjoy. And I love teaching too.

BLOOM: If you could give yourself advice when you were starting out, what would you say?

Anne Kawamura: I think having a good mentor in the field is important, in terms of balancing workload and the rest of your life.

There are stressful cases where you feel you don’t know how to help or how to resolve a situation and having someone to talk to is really important. Earlier on I had mentors like Darcy Fehlings or Golda Milo-Manson. And now I could still knock on their doors, but I have other people that cross disciplines, like Peggy and the other colleagues I work with.

You need many mentors and they will be different people at different times.

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This mom is a lifeline for inpatient parents

In 2006, Lies Ferriman’s 15-year-old son Sasha sustained a severe brain injury while snowboarding. He was in a coma for 10 days and spent seven months at Holland Bloorview in intensive rehab as both an inpatient and outpatient.

Five years later, Lies (above) became a family mentor at the hospital, sharing her firsthand experience with other parents of children who are inpatients.
“Holland Bloorview was like a lifeline when we were here,” Lies says. “So I wanted to give back to other families who are experiencing similar things. I want to impart the fact that you’re in this horrible situation at the moment, but it will get better. It will become a new normal.”
Once a week Lies and a family support specialist invite parents of children who are inpatients to meet in the Family Resource Centre. “We go onto the unit and knock on doors and introduce ourselves and invite them downstairs,” Lies says.
Each meeting is an opportunity to share practical information—like resources and funding available in the community—but also to talk about how families are coping with their child’s rehab and “to listen to any burning issues the parents have,” Lies says.
“There’s a sense of community and a sense that you don’t feel so alone. We try to have the topics very broad so that they address a variety of disabilities and there are nuggets parents can glean that are useful for their child. I’m also amazed with the different cultures and religions we get around the table—it’s like a cross-section of the world. And it’s useful to have all of these different perspectives.”
Lies says parents often feel comfortable confiding their concerns and experiences with a parent who’s walked in similar shoes. “They tend to be completely open with us.”
She says she needed a few years’ distance from her son’s injury before she was ready to support families. “You need to be emotionally ready,” she says. “You need to have some distance where you can look back, and your feelings aren’t still raw.”
Lies says the qualities she brings are an ability to listen to family stories and to share part of her story when it relates to a situation which a parent may bring up. “I’m very passionate about my role. And it’s a reciprocal experience. I get so much out of it.”

Lies has logged over 700 volunteer hours in her work as a Holland Bloorview family leader. In this video she talks about what it's like to cope with a child's acquired disability.

To find out more about our family leadership program, call 416-425-6220, ext. 6420.

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