Tuesday, August 26, 2014

In the community, but alone

By Liz Lewis

What does it mean to be part of a community? To recognize oneself and be recognized as a member of a social group, neighbourhood, or everyday world? As an anthropologist, these questions are standard fare. As the only sister of a woman with disabilities and deafblindness, they are deeply personal.

On paper, my adult sister has a great setup. Katie receives government funding to live in a home five minutes from my parents, with a lovely roommate and conscientious caregivers. Yet my sister lives in near total isolation, with no friends, activities or hobbies. And I know that as an adult with complex disabilities, she is not alone.

Katie has a genetic condition called CHARGE syndrome and needs 24-hour care. She’s never communicated verbally, although she knows some signs and her expressions of happiness and dissatisfaction are easy to read.

Katie can’t drive, cook, or really care for herself, although she can feed, bathe and dress herself with a little assistance. As the mother of a toddler, I'd say that she and my son operate on similar levels. Although I'd prefer to write something lighter and more optimistic, the truth is that Katie can’t do most of what able-bodied adults, or even children, can.

These complex disabilities mean that independence, communication and social connections look different for Katie. She finds agency in deciding what she’ll have for her snack, for instance, or whether she’ll relax with television or ask to go for a ride in the car. She asserts herself by refusing to participate in an activity or by showing joy and excitement over trying something new. She expresses love and caring by sitting quietly next to someone, giving hugs, or simply smiling. She likes to pat my son on the head, but has been known to pinch him when she’s fed up.

It can take time and patience for people to learn how Katie expresses her needs, preferences and desires. Yet again and again I have witnessed her win over caregivers, professionals and acquaintances with her unique charms. This makes it even sadder to me that when I visit my hometown, where I no longer live, my sister is largely alone.

Among adults with intellectual and developmental disabilities in the U.S., Katie is considered one of the lucky ones, meaning that she neither lives in an institutional setting nor in her childhood home. Her access to a high-quality home and staff ensure that my parents don’t bear the brunt of Katie’s lifelong caregiving needs, which will become more complicated as we all grow older. Still, as both an anthropologist and a sibling, I am disturbed by what I see.

When I visit my sister, I can't help notice her neighbours’ lowered gazes as they quickly shuffle from their driveways to their own homes; we've never exchanged a word other than “hello.” I can only imagine what the children and teenagers on the block think of her house. Katie does not go for walks—indeed, I don’t believe her street even has sidewalks—so her only time outside is when she walks the 10 feet to a waiting car to take her somewhere, typically to a park or the drive-thru of a fast food restaurant. Katie might be in the community, spatially speaking, but she is not there in any meaningful way.

Even more disturbing is my sister’s lack of activities and hobbies, which would provide a sense of accomplishment and give her new social connections. For several years, she loved attending weekly equine therapy classes, but then the program lost funding and eliminated its offerings for adults with disabilities. My family investigated volunteer options, such as sorting food containers or recycling for nonprofits or donation sites, but came up short. One well-known local organization even told us that they couldn't let Katie volunteer for them because she might harm herself, offering paternalism as a thinly veiled substitute for blatant discrimination.

The longer Katie lives like this, the farther she seems to withdraw into herself. She loses skills she once had and, at least to me, seems less able to connect with others. She develops essentially anti-social behaviours, such as eating with her hands instead of a fork, which would likely be interpreted as a product of her disabilities even though they are completely new. Although I now live in another state and can no longer participate actively in my sister’s daily life, I am consistently saddened by what I see when I visit. And this is in a state that rates average or above in disability inclusion. To be sure, the situation is far worse in many parts of the U.S. and elsewhere.

The inadequacies of the current independent living and social inclusion movement are more than disability rights issues. They also connect closely to individual safety and public health. We are all safer when we have networks of people—family, friends, coworkers, neighbors and acquaintances —looking out for us. Katie has very few of these. Similarly, there is increasing scientific evidence that social isolation is bad for our health. How might it look if we as a society began to approach social engagement for people with disabilities not as a luxury, but instead as a pressing public health issue?

While great strides have been made in recent decades regarding the integration of people with disabilities, there's much more work to do. The need to rethink what we mean by inclusion is urgent. In the U.S., only 13 states plus Washington, D.C. have closed all of their institutions and, thanks to changes in federal law such structures will soon be a thing of the past. According to United Cerebral Palsy’s most recent annual study, The Case for Inclusion, since 1960 over half of our existing institutions have closed, and 16 more are slated to shut their doors by 2016.

Why not seize this transitional moment to prioritize a new approach to community services and opportunities that make social inclusion a reality, such as increasing access to recreational and employment programs for adults with disabilities? The challenges are large-scale and will require a powerful effort to effect change in existing structures, practices and assumptions. It must no longer be acceptable to equate integration with community living services. Families, self-advocates and allies must demand a more holistic, respectful form of inclusion that acknowledges the social rights and needs of people with disabilities. I, for one, think the time has come.

For more on community living and inclusion, refer to the University of Minnesota’s Research and Training Center on Community Inclusion and to United Cerebral Palsy’s The Case for Inclusion 2014. The Center for Human Policy, Law, and Disability Studies at Syracuse University also has an extensive list of relevant resources.

Please follow Liz on her fascinating blog Disability Fieldnotes or on Twitter @LizLewisAnthro. Her last piece for BLOOM was Disability was home: From big sister to anthropologist.

Wednesday, August 20, 2014

What is 'progress' in prenatal testing?

By Louise Kinross
Yesterday I was contacted by a researcher at Duke University who wanted to interview me about a new blood test that can detect micro-deletions like my son’s genetic condition—Langer-Giedion Syndrome—as early as 10 weeks into a pregnancy.

written about the issues I have with prenatal testing: that it’s increasingly viewed as a standard of medical care and social responsibility, rather than a woman’s choice, and that when a prenatal diagnosis is made, a clinical description isn't balanced with information from families raising children with the condition or affected adults.

In addition, information is often presented in a value-laden way. For example, I’ve been on the receiving end of obstetricians and genetics counsellors who talk about “perfect” babies and “abnormal” babies, and about a “burden you’ll live with for the rest of your life” during what is supposed to be neutral counselling.

It's also quite possible that the clinician a parent speaks with during genetics counselling has zero life experience with disability—kind of like talking to a car salesman about a car he's never driven. Instead, it’s more likely that the clinician views genetic disability as a preventable, costly medical error.

The Duke researcher sent me a link to Sequenom Laboratories’
press release.

It reports that the company will be able to identify three new micro-deletions—including Langer-Giedion Syndrome—as part of its Materni21 PLUS test. Although this blood test already detects a handful of micro-deletions, it’s named for its ability to detect Trisomy 21, or Down syndrome.

There’s a quote from the head of maternal-fetal medicine at Cleveland Clinic saying the test “has helped change how we treat our prenatal patients.” However, there isn’t any explanation as to what this change is. The doctor does say he can now provide patients with results as early as 10 weeks into the pregnancy.

Does counselling for a genetic disability at 10 weeks into a pregnancy differ in any way from that at 16 weeks? If so, what are those differences?

As the testing for micro-deletions is expanded, how is the clinician’s real-life understanding of these conditions enlarged to ensure prospective parents get balanced and rich information?

What are clinicians doing to reach out to families affected by micro-deletions so they can provide more than a clinical description and perhaps even a referral to a support group?

Like other deletions, Langer-Giedion Syndrome affects people differently. The MaterniT21 PLUS will not give prospective parents any insight into whether their child will be mildly, or more severely, affected. My son will not go to university, but some with the disorder do. Prospective parents will have a diagnosis, but no clear sense of impact. Quite the emotional quandary, I would imagine, and not the precise, scientific "genetic analysis solution" that the company refers to.

To me, the technical side of prenatal testing is the easy part. The information and counselling that comes after a diagnosis is the messy part, the part that needs critical scientific attention and study and evaluation.

Sequenom says that it’s “committed to improving healthcare” but it doesn’t mention anything about how the results of its test are used, or how test results translate into counselling that prospective parents find useful, supportive and neutral.

Oddly, Sequenom’s news release doesn’t mention a thing about termination, yet I imagine most positive Materni21 test results lead to termination. Why is this not openly discussed in its promotional materials?

Again, I think it's easier to talk about “laboratory-developed”  tests and “revolutionary genomic and genetic analysis solutions” rather than the real-life decisions of a woman who may know little about disability or be ambivalent about using termination as a prevention measure.

Note that
on July 29 Sequenom reported revenues of $39.8 million for the second quarter of 2014, an increase of 62 per cent over the same period last year.

There’s lots of money to be made in increasing the number of women who take the Materni21 PLUS.

My autism and me

ICYMI. Lovely video by a 13-year-old who explains her autism, then interviews other children about how autism affects them, including her brother.

Friday, August 15, 2014

Look how far we've come

Earlier this year, Sheila Jarvis announced her intention to step down as President and CEO of Holland Bloorview Kids Rehabilitation Hospital after 18 years. Here she shares the challenges, milestones and triumphs during her remarkable leadership.

BLOOM: What changes have you seen at Holland Bloorview?

Sheila Jarvis: I came in 1996 and the most significant part of those early days was bringing together the Hugh MacMillan Rehabilitation Centre and Bloorview Children’s Hospital. The board, with the Ministry of Health’s blessing, had made a decision to merge the two children’s facilities—one being a small long-term care facility and the other being a small children’s rehab hospital. The vision was that we would build significant capacity in the field of childhood disability and be able to do so much more than we could as two distinct and separate entities.

The board was bold and courageous because both organizations had a proud history of accomplishment and success and this was a brave new world for them.

Our first tasks were to effect a very positive merger and to begin to plan for amalgamation of all operations on one site.

Along the way we created a strategic plan that spoke to a renewed organization that would reflect excellent care for clients and families and support a more ambitious agenda in teaching and research.

Early on we recognized we had the genesis of a really good client- and family-centred program, but we hadn’t thought a lot about how we would nurture it. In all of our future strategic plans we committed to truly embrace partnership with families and push it out as far as we could. Our engagement with clients and families and youth today has set the standard globally in this area.

In addition to transforming care through the merger we were engaged in the design of this new facility, recognizing that there wasn’t a facility anywhere in the world that we could model. Not only has the building been an award-winning design for children with disabilities here in Ontario, but it’s become a model for children’s rehab around the world.

At the same time, we wanted to enhance in a very significant way our research agenda and our goal was to create something novel in our field in Canada: a research institute entirely devoted to applied research in the area of childhood disability. We understood that in order to do that we needed to be recognized as a teaching hospital; when the University of Toronto governing council approved us as a fully affiliated teaching hospital, we had achieved another important milestone.

We were able to convince one of our two founding foundations—the Bloorview Children’s Hospital Foundation—to commit a significant endowment that allowed us to launch the Bloorview Research Institute in 2004.

We set out on a deliberate campaign to recruit a small number of excellent clinician scientists and investigators. We knew we’d never be big but we wanted to be impactful and we did that by recruiting the best.

Along the way our two foundations merged in 2009 to create the Holland Bloorview Kids Rehabilitation Foundation. Their first campaign raised funds to build our new facility, and we’re now in the midst of a significant campaign to raise funds for care, teaching and research.

Five years ago we created the Teaching and Learning Institute. Our dream was to create a student environment here that would be second to none. We did this for two reasons: we typically recruit from successful graduates who’ve spent time here and we wanted to build capacity in the field so that students here would take their knowledge and skill to other places around the world. We’ve been able to do that successfully and have played a lead role in interprofessional education, introducing it to disciplines beyond the traditional medicine, nursing and therapy—like bioethics and rehab engineering.

A few years ago we created an evidence-to-care unit with the goal of creating evidence-based practice guidelines in child disability where they don’t exist. This was started entirely from funds from our Foundation and has been matched by funding from the Ministry of Health. An example is the development of the assessment of pain toolbox for cerebral palsy. Our job now is to move this clinical practice guideline not just throughout our own hospital but to children’s rehab centres around the world so that everyone has a standard way of assessing and measuring pain. That will hopefully lead to meaningful interventions to alleviate pain that can be measured.

One of our goals in creating the research and teaching and learning institutes is to transform care by embedding and linking teaching, research and care within the organization wherever possible, and building on our family engagement.

BLOOM: What changes have you seen in the world of child disability since you came to Holland Bloorview?

Sheila Jarvis: Teaching and research has grown exponentially as a result of our efforts and it truly is having an impact on care. We’re not just doing research for the sake of doing research. We’re answering questions that are meaningful to clients and families. For example, we’re measuring the impact of the use of the Lokomat robotic treadmill on young people with cerebral palsy, and searching for a new drug to treat the behaviour symptoms in young people with autism. The research we’re doing is having a direct and immediate impact, not just here but around the world. We’ve been very successful in capturing national and international grants and in publishing.

BLOOM: What has been the greatest challenge in your role?

Sheila Jarvis: In my early days, pulling together an effective merger and achieving financial goals as well as strategic, programmatic and cultural goals, was more challenging than I estimated. When you look at the literature on hospital mergers, very few achieve financial goals. Bigger isn’t always better. We were successful because we stayed very focused. Integrating the two cultures took a long time, but I think was also very successful. As a result, we have a very cohesive culture today. In our recent staff engagement survey 80 per cent of staff responded and 78 per cent felt very engaged in the organization and fully supported our mission.

In the 18 years I’ve been here we’ve seen two cycles of significant financial constraint. The first period was at the end of the 1990s and early 2000s. Thanks to prudent fiscal management throughout the course of our merger, we were able to protect and even enhance some of our programs in spite of those financial challenges. Right now we’re in another time of fiscal constraint as we all work to help the province balance its budget in the next few years. I think because we’ve embraced strong fiscal management practices and endorsed improvement science, such as Lean, we are well positioned to continue to provide excellent service for clients and families in spite of our fiscal challenges.

BLOOM: What has surprised you during your tenure?

Sheila Jarvis: The fact that we’ve recruited an amazing staff who are so completely dedicated to our vision of creating a world of possibility for young people with disabilities and built a strong research and teaching foundation to support our vision. This has allowed us to achieve tremendous impact. I always describe it as a team effort and I think that’s really true: not just our staff, but our clients and families and an amazing cast of volunteers, including our board. We’ve also had remarkable support from the Ministry of Health and Long-Term Care and more latterly through the Toronto Central Local Health Integration Network. We’ve always had great support from our academic partners at the University of Toronto.

BLOOM: What are you most proud of during your time here?

Sheila Jarvis: Creating the physical space that’s allowed us to do what we do best and transforming care through our vision of teaching, learning and research. That’s what’s totally unique about our organization: there isn’t another hospital that we’ve found that knits teaching, learning and research together with clinical care in the field of childhood disability the way we do.

BLOOM: What advice would you give our next CEO?

Sheila Jarvis: To take advantage of the expertise that is here within Holland Bloorview and the commitment of our staff. Our powerhouse of staff, clients, families and volunteers is second to none. The opportunity is to take us to the next level. We’re so well positioned to go further, faster perhaps, and to cement our global impact.

Our academic and community partners and the Ontario Association of Children’s Rehabilitation Services have contributed to our strength and we will need them all going forward. In health care, overall, we are still a fairly small entity and we couldn’t have achieved what we’ve achieved without strong partners. Based on our accreditation feedback we are considered to be generous partners.

BLOOM: How have you managed to juggle everything considering the magnitude of your role?

Sheila Jarvis: I don’t do it all myself, that’s for sure. I have a great team of professionals and each member brings a particular strength and area of expertise to the senior management table. All of them are completely committed to our vision and I count on them to contribute to the overall leadership agenda for the organization and together we’ve accomplished a lot.

We’ve also had exceptional boards of trustees made up of leaders in the community who volunteer their time to support our strategy. They’ve been fundamental to our success and they’re truly my boss at the end of the day. It’s been so engaging and so exciting and our vision is so compelling and inspiring that it really has been very rewarding for me professionally.

BLOOM: You began your work as a physiotherapist. Have your own views about disability shifted over the years?

Sheila Jarvis: When I started out it was all about children with handicaps and then we began to talk about children with disabilities. I think I’ve come to realize that young people with disabilities are so amazingly able in so many ways. I think it won’t be long before we stop talking about disability and probably talk about people who are ‘differently abled.’ When you recognize how amazing their skills and talents are, and what they’ve accomplished, even as young people, you realize they’ve got a lot to teach us.

Learn more about Holland Bloorview's
search for a new CEO.

Wednesday, August 13, 2014

New legal service aids Holland Bloorview families

By Louise Kinross

Your child has a disability and needs regular medical visits, but your boss threatens to fire you if you take the time off.

This is the kind of issue parents bring to Pro Bono Law Ontario at Holland Bloorview, a free legal service on non-medical issues that may compromise a family’s ability to care for their child with special needs. The service, led by our new onsite lawyer Hannah Lee, is offered to Holland Bloorview families with low to moderate incomes.

“How can a parent that’s being bullied by an employer or facing a hurdle in securing housing because their child’s medical needs are so great provide the best care for their child?” Hannah says. “I work with a network of lawyers and am here to give parents access to the information and resources they need. In most cases, we are able to advocate or find legal solutions. We try to shield parents from unnecessary stress so that they have the energy to care for their child.”

In addition to meeting one-on-one with parents, Hannah meets with lawyers working in several Ontario children’s hospitals on a systemic issues committee that “looks at bringing legal challenges to contest policy that discriminates against families with children with disabilities,” she says.

In Canada, “we tend to think equality means treating people in the same situation the same way,” Hannah says. “But sometimes equality requires treating people differently. This view of equality is called substantive equality. Because people have different needs and circumstances, we shouldn’t assume that just because they don’t follow what society normally requires of them that they are less capable or less deserving of respect and dignified treatment.”

Hannah has been onsite at the hospital two mornings a week since November, and has handled about 100 consultations with parents. She’s located on the main floor in the Family Resource Centre.

The service has had positive feedback, including resolving some cases where employers objected to a parent attending a child’s medical appointments. “When you have legal counsel involved, it tends to make employers accountable,” Hannah says. “They have a duty to accommodate to the point of undue hardship.”

Nadine Sunarich, social worker with Holland Bloorview’s child development program, has referred a number of parents to the service. “These clients have had issues related to immigration, Assistance for Children With Severe Disabilities funding appeals, family law, debts and unpaid taxes. They’re very grateful that this program exists and that it is onsite.”

In the past, Hannah worked as a defense litigator. She also volunteered in a legal-aid clinic for youth and in Pro Bono Law Ontario’s Child Advocacy Program, a free service that provides parents with lawyers to advocate for their child’s special education needs.

Since working with our families, “I’ve seen how resilient parents are in the face of adversity,” she says.

Holland Bloorview families who are struggling with a legal issue can e-mail Hannah at hannah@pblo.org.

Friday, August 8, 2014

'No brother or sister should grow up thinking I'm the only one'

By Louise Kinross

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 (above left), grew up with an older brother Jalbert (right), who was born with a visual disability and autism due to exposure to an infection during his mother’s pregnancy. In her book, Anjet interviews 36 siblings aged six to 69.

Her goal, she says, 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 adult relationship with their brother or sister “come from the heart, rather than feel like a must-do obligation,” Anjet says.

Here she shares her own story growing up. Look to the September issue of BLOOM for Anjet’s tips to parents on siblings.

BLOOM: Tell us a bit about growing up with your brother.

Anjet van Dijken: When he was born he could only see a little bit and at age 11 he suddenly became blind. He had a mental disability that made him interested in just a few things: listening to marching band music and taking the train. He was perfect at knowing all of the bus and train timetables.

When I was three and Jalbert was six my parents decided to let him live in a home. My mother felt that he would get the best help there and that she had created a safe environment for him. She was worried about the future, about who would care for him when she wasn’t there. She didn't want to put the ‘burden’ on me.

To solve the problem that he lived 70 kms away, my parents purchased a summer vacation home near him. Every weekend we would drive from The Hague, where we lived, to our summer home in Utrecht. We’d pick him up, spend the weekend with him and then drop him off on Sunday afternoon.

I felt growing up that my brother was a lot in his own world and I tried to get him out of there. I felt his disability was too often used as a poor excuse for leaving him in his own world. For example, if people visited us, he could stay in his room and play his music for another three hours, while I was expected to come down, say hello, and sit for a while, even if I didn’t feel like it.

As a child I had all these thoughts about him and his development but I didn’t think my opinion mattered. The deepest reason for writing my book is to say to other siblings that their thoughts and opinions do matter and need to be expressed.

BLOOM: How did it feel when your brother moved away?

Anjet van Dijken: It felt normal. At age three I didn’t have any comparison. I didn’t feel a rupture because we went every weekend to my brother so I always felt I grew up with him, and that was a nice feeling. I loved his home. It was on a big terrain with lots of trees and until he was 11 he could see a little, so we could bicycle around that terrain together. He went to school but it wasn’t academic so I was jealous of him. He did fun and creative things like Snoezelen and colouring, while I had to learn things in my school.

BLOOM: Was it painful for Jalbert to go to the new home?

Anjet van Dijken: What has stayed in his mind is that he got to take a bus there and that the bus was great fun. It was exciting for him. He doesn’t complicate things. He doesn’t live in the ‘I wish I could’ world. He takes life as it is. I never felt that our weekends with him were not normal or that our goodbyes were painful for him.

BLOOM: What was it like for you to live in two places?

Anjet van Dijken: My life has been divided in a lot of respects. My upbringing in The Hague was like any other child’s. I had a mother waiting at home for me after school and activities like playing with friends, swimming and skating. Yet I felt like I was the only child, so I felt guilty about sort of ‘hiding’ my brother.

In Utrecht, life revolved a lot more around my brother. The plus side was that we were brother and sister. But Jalbert living away from us wasn’t ‘normal’ and I could never explain him to my friends: the fact that he lived in an ‘institution,’ as it was called then, always got in the way.

One thing that’s different for parents and siblings—especially for siblings who are younger than the child with disability—is that the disability and the brother go together. If people thought my brother was disabled I couldn’t understand that, because he was my brother. The disability belonged to him, [it] was part of the picture. I still can’t see the disability apart from him.

But it was impossible to tell my friends that Jalbert was ‘just like any brother.’ The best way I found to describe him was to say ‘I have a brother who's blind and disabled but always very happy!’ and I would emphasize the happy part. I wanted people to see him as he was.

Of course, he was not a brother that wanted to play with me, but what I admired in him was that he always saw the positive in people and situations. He will defend anybody and that was more important to me than the fact that he had disabilities. For me it was normal to walk across the street with him on my arm. Yet people would stare at us. Other people always saw the handicap. They never looked beyond the handicap. So that made me doubt myself a lot: maybe I was the one not seeing him for who he was?

For siblings, the hardest thing is that you have this brother that you love and others don’t see him for who he is. Growing older and looking back, I was angry at other parents with healthy children: they had a duty to educate themselves and their children.

Going to visit my brother on weekends became difficult for me from about the age of 12. That’s when I noticed that my friends were having games of hockey or tennis or doing other sports on the weekend in our hometown, and I couldn’t because I had to go along with my parents and brother.

BLOOM: What happened in your teen years?

Anjet van Dijken: As you get closer to puberty, friends start to matter more than brothers and sisters. That’s the case in every sibling relationship, as I show in research included in my book. But because Jalbert was not very involved or interested in my life during those years, I didn’t know what we meant to each other.

I began to think that my brother was of no use to me. And, in fact, he was a drawback: people always saw me as ‘the girl with a handicapped brother,’ not for who I was or wanted to be. At age 14 I sort of decided ‘he’s in a home, he’s not really in my life’ and it was like a rupture in my head.

Looking back, I was starting to form my own identity. I started to separate myself from the role I’d had with him, which was being either the carer or the class clown. I had loved the role of making my brother laugh to bring him out of his world. But at around 14 being the clown clashed with who I was.

At that time I'd started a hobby, working at a local radio station. For the first time in my life it didn’t have any link to my brother. I felt such an energy doing something I liked to do, just for me.

For a long time I felt guilty though, for being so selfish, for growing up and 'mentally' breaking up with my brother. But in retrospect I feel it was very healthy for me to say: ‘Now it’s my turn.’ My mother was understanding. She said ‘You don’t have to come with us every time we go to the summer home’ and she praised me for enjoying my life. More and more on weekends, I would stay with my father or we would go up later on a Sunday.

BLOOM: When you were young, both of your parents died.

Anjet van Dijken: When I was 16 my mother was hit by a car coming home from a school meeting about me. The next day she was declared brain dead.

Three years later, after my dad and I had grown closer, my dad died of an aneurysm. I was three months into university. The only light points were that one, my brother was there—I have one family member left and thank God it’s the one who is always the same— and two, he is taken care of in a home, so I don’t have to leave university.

The first thing I did with my brother after the funeral was to take him on a train trip.

BLOOM: How did he respond to your parents’ deaths?

Anjet van Dijken:
For me, it was all about the emotions, but for Jalbert it was the factual that counted: ‘I counted on my mother, and she went,’ he said. ‘I counted on my father, and he left. Now I only have you. I can’t count on you anymore.’

For the first time I really hated his disability. I was the only family member left and he was going to throw me out too?

And not only could I not share my emotions with him, and memories of what we’d done together with our parents, but I felt an even bigger gap between us. Really, what was our bond? Was my role to be his carer, or was there room left to be his sister? At that point I felt empty. I felt I was expected to be his carer, and that felt wrong.

But that’s what I did for the first couple of years. I mindlessly helped him continue with his life as he had lived it when my parents were alive. I told myself I had to take him on a train trip every two weeks, but from day one I resented it. I don’t think it was fun for either of us.

Slowly, during my university years, I began to see that other brothers and sisters didn’t see each other every two weeks. I decided I should visit when I felt like it and I could sometimes have a day off. I started to say 'this is my life too, and I don’t always come second. '

BLOOM: Why did you decide to write your book?

Anjet van Dijken: The main reason is that I didn’t want other siblings to feel alone, as I had for so long. No brother or sister should grow up thinking I'm the only one with questions, with thoughts, with conflicting emotions.

You can be proud of your brother and at the same time ashamed, and then angry for being ashamed, and then sad because you were angry. My first idea was to write my own story. But then after working at the radio I felt strongly that if I interviewed 36 siblings, readers could ‘see’ that they weren’t the only one.

The other thing is I want to make siblings think about what they want in their own life. I want to show them by reading others’ stories that everyone is wondering about their place in the family and in the future, including their role in their sibling’s life.

Dr. Tinneke Moyson, the researcher who contributed to my book, found siblings tend to put themselves in the background. Out of loyalty, they feel they have to obey their parents and continue putting the [disabled] sibling in the centre of the family.

For siblings, trying to put yourself in the background AND living your life doesn’t work: it catches up with you. Though living your own life is not easy—especially if your parents have different expectations for you—I tell siblings they have to think about what they want first, and then how they’re going to be a part of their brother’s or sister’s life. Only then can you do it wholeheartedly.

BLOOM: You spoke to 36 siblings aged six to 69. What was the most common challenge they faced?

Anjet van Dijken: The first thing I noticed was that 33 out of 36 said they had never ever talked about this to another sibling. They had never met another sibling of a child with disability.

I loved writing the book because there’s no judgment between siblings when you have been through the same experience. Even though one person has a sibling with autism and one has a sibling with Down syndrome, they don’t look at what is different, but where are they the same? What can we relate to?

The common denominator is that you always defend your brother or sister first. If you interview a sibling they will tell you all the positive things first because it’s so important to them that others see their brother or sister as a person. You want them to be accepted. Then, if you feel understood, you will share what’s difficult. But initially there’s a holding back of your emotions.

BLOOM: Were there other common experiences?

Anjet van Dijken: I go to evenings where I speak to about 100 siblings and 80 per cent or more have never heard anyone speak the way I do about putting their life first and daring to talk about their emotions. Not only have they felt alone, but they thought they were crazy for a lot of the thoughts and feelings they have. ‘Now I understand I’m not crazy,’ they’ll tell me. ‘I’m a sib.’

BLOOM: How can siblings best be supported?

Anjet van Dijken: I'm involved in a research project with the Dutch Youth Institute where we hope the Dutch government will set a base of support and information for siblings, because there is none. One of the big problems is that siblings feel loyalty, out of love and respect, for their parents. So if they disagree with something—with the parents’ vision of how the future is going to be and where they fit in—they don’t dare speak out.

The sibling relationship is different than the parent relationship. As siblings, you’re not above or below, you are equal.

One sibling said to me: ‘I can’t tell my mother that my brother acts even more disabled when he is with her. With me, he can make his own toast, but with our mother, no, he just sits there and acts like a baby.’ The other child can see progress that the parent can’t.

Siblings aren’t initially aware that they need support. What they tell me is that they don’t want to go see someone like a psychiatrist. They want to know that there are other siblings and to get in contact with them. After one of our sibling group evenings they will say: ‘Wow, we all have the same thing.’

There are a few sibling groups for young children, but nothing for adults, and that’s my main focus.

Things get complicated when siblings are in their 20s and they have a relationship, or children, or a job. Many sibs spend every Saturday, or every other Saturday, caring for their brother or sister to give their parents relief. So young caretakers become adult caretakers.

But there's more: Our brothers and sisters are, due to advancements in health care, the first generation of people with disabilities who are outliving their parents. In America I read about the 'sandwich generation:' We are the ones raising our children, looking after our parents and taking care of our siblings. The how needs to be addressed, because we're not 'super' siblings.

Anjet can be reached on Twitter @DutchSib or at the Facebook group for her book. She has a Dutch Facebook group for siblings at Lotje@coBrussen. Her book is available in Dutch but she would love to hear from families and professionals who'd like it translated into English. Watch this captioned video of her book launch. The Brothers and Sisters Book is published by LanooCampus: EAN 9789401408844. This is the book cover and a photo of Anjet and Jalbert as children.

Wednesday, August 6, 2014

Mia meets a butterfly

By Louise Kinross

Mia Pruder’s sparkly-gold nails clicked excitedly on her wheelchair tray.

The seven-year-old was in her hospital room at Holland Bloorview and a large, clear canister with a newly-hatched monarch butterfly was placed on her tray. It perched, with its brilliant orange wings tipped with white dots and marked with black veins, on the side of the container.

Several green chrysalides hung from the mesh lid, each with a strip of tiny gold beads on its case that looked as decorative as Mia's nails. At the bottom, a caterpillar striped black, white and yellow was crawling over a leaf.

Mia, who has an auto-immune disease and suffered a stroke following a surgery, eyed the suspended green shells intently.

The travelling canister is home to eggs, caterpillars, chrysalides and butterflies that intrigue child audiences within the walls of the rehab hospital.

“Children may not have the opportunity to get out of the hospital so it's great to bring nature indoors,” explains Effie Biliris, a youth facilitator who co-ordinates the Blooming Butterflies Program at Holland Bloorview.

“We use monarchs because their transformation is so visible,” says Robyn Sanford, coordinator of participation and inclusion at Holland Bloorview. “Every stage is distinct and the kids can see what's happening.” 

The monarchs are ideal for use in a hospital because they pose no infection risk, are silent, require little care and don't disrupt patient care.

In addition to observing the creatures and learning about their care, children participate in related activities like making butterfly masks or butterfly cut-outs.

The caterpillar's metamorphosis into a shell, called a chrysalis, is so unusual a process that even Effie says “no words can describe it. The caterpillar's skin opens up and it goes inside. It then spins a web on the mesh at the top of the canister to hold itself upside down in a J-shape. When they shed their last skin, they wiggle and the skin coils up and falls off.”

Within 24-hours of emerging, the monarch butterflies at Holland Bloorview are released back into nature.

Mia was pushed in her wheelchair out onto a terrace where a butterfly was placed on the back of her hand. It waved its wings majestically, tickling her skin. She was told to make a wish and the butterfly, named Molly after her beloved pink cat blanket, flew away. 
The girl who loves pink and purple understands everything, her mother Heather says, but her stroke has taken her speech.

The butterflies are also released in the ravine behind the hospital in Spiral Garden, Holland Bloorview’s outdoor integrated arts camp. These ceremonies take place in Butterfly Garden, which is dedicated to the memory of Jamie Burnett, a beloved therapeutic clown who created his own magic for our inpatients before dying of a brain tumour in 2011.

The Blooming Butterflies Program is funded by the Norman and Marion Robertson Charitable Foundation and based on How To Raise Monarch Butterflies: A Step-by Step Guide for Kids by educator and photographer Carol Pasternak. Carol taught Holland Bloorview staff how to care for the butterflies and release them with the help of clients. She raises Monarch butterflies with her family in Toronto.

Photos by William Suarez