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Julia knows firsthand that every family is unique

Meet Julia Hanigsberg, the new president and CEO of Holland Bloorview (in photo with daughter Rachel). Julia comes to us from Ryerson University, where she was vice-president of administration and finance. Here she tells us more about her own family's experience with disability and how she's learning about the hospital "from the ground up."

BLOOM: What does your experience as a parent of a child with disability add to your role here?

Julia Hanigsberg: I think it gives me a perspective on the complexity of the lives of our clients and families and a real appreciation of how every child—and every family circumstance—is unique. I think that’s even more the case in childhood disability than in other medical settings. Our client population has so many different vulnerabilities and exceptionalities and I have a real sense of that and of what families go through in trying to achieve the best opportunities for their kids.

BLOOM: Can you tell us a bit about your daughter?

Julia Hanigsberg: Rachel is 18 and we’ve been through a journey of diagnoses with her. She was born prematurely at 29 weeks and has global developmental delay. Then 15 years later there was a new diagnosis of autism. She also has some associated mental health issues like anxiety. I know that the diagnostic world for our kids is often longer and not so straightforward. There are layers, and things emerge over time as our children change. The world in which we operate is not a ‘one-size-fits-all’ world.

Rachel is in high school and she’s a very typical teenager who loves YouTube and her music—very loud music—and her privacy and space and wants to be independent. Her school is a great fit and she’s very enthusiastic about starting co-op because she’s excited about the world of work. She loves to shop, so she thinks working in stores will be lots of fun.

BLOOM: What’s been the greatest challenge parenting Rachel?

Julia Hanigsberg: Two things. One is navigating the system and knowing what to do when. Knowing that you’ve explored all the possibilities, you haven’t left any stones unturned. It’s a two-edged sword because when they’re little, and even now, you don’t always know what the possibilities are. The nice thing about having a teenager is that they have their own ideas about what they want to do.

The other challenge is moving into the adult system and that transition point is a very serious concern. Rachel’s 18 now so we are right in the heart of that—thinking of what the long-term future holds. School will end and that will be an enormous point of transition for her. As long as your kid is in school you know that they’re well taken care of for a good chunk of the day. The path for my daughter after school is less clear.

I’m conscious of the fact that my experience as a parent is just one parent’s experience. For example, our experience is very different from a parent who has a child with an acquired brain injury—where in a moment everything changes for their typically developing child. I gave birth at 29 weeks and we had a long time to move into the world we were in.

I’m also very well aware of the privileges I have. English is my first language and I don’t have a job where taking half a day off for my daughter’s medical appointment isn’t an option.

BLOOM: Can you tell us about your background?

Julia Hanigsberg: I’m a lawyer by background. I think that’s a fantastic educational background for being a problem solver. You come out with a structured way of thinking about problems. Very little of my career has been spent as a traditional lawyer. I spent 10 years in the provincial government, mostly with the Ministry of the Attorney General and in the Cabinet Office doing policy and legislation-focused work. I was chief of staff to a cabinet minister so I have a broad view of the workings of government from a civil service, policy and political perspective.

Then I went to Ryerson and spent five years as the general counsel and secretary of the board and five years as vice-president of administration and finance. It gave me time to understand how big organizations work and how you make difficult decisions within the context of large organizations. One thing I took from my time as a trustee of the board at Holland Bloorview and applied at Ryerson was related to client- and family-centred care. Family leaders here are involved whenever there’s a big procurement decision. At Ryerson, we never would have involved students in that kind of decision. So when Ryerson put out a request for proposal for a new food management company I suggested we have two students on the selection committee. It was fantastic.

BLOOM: Why do you believe that social media is important in your role?

Julia Hanigsberg: Two reasons. One is giving people an opportunity to get to know me as Julia and as the CEO of Holland Bloorview and demystifying the role. People who follow me on social media and talk to me in the halls will see there isn’t a big disconnect. As much as I’m trying to meet every person, it’s hard to do that, so I want to find other ways to expand how I connect with the team that works here and with clients and families. The other is to be part of the ecosystem of sharing of quality Holland Bloorview information that I can disseminate out to the world. My experience with social media is that you frequently make connections online that result in incredibly valuable personal and professional connections. There is a richness there that not everyone appreciates.

BLOOM: Research shows that parents of kids with disabilities are at greater risk of depression and anxiety and physical problems. What strategies have you used in your own life to take care of yourself?

Julia Hanigsberg: It’s a struggle that every parent has, period, and our parents have much more complex families. The other area we read about is resilience—in our children but also in ourselves. Building up capacity for resilience is like building up a muscle. I think that’s quite inspiring and something to be really thoughtful about.

A lot of what we do personally is the normal stuff—eating well and exercise—because you know you’re going to have to absorb and do more. We’re very lucky in that we have a lot of family around us. Respite is so important. We do a lot of that here at Holland Bloorview for our clients and families. In my family, we have nephews and nieces and grandparents who are really involved. So my husband and I can go away for a weekend, pretty infrequently, but we can do that. The support of family also means we can spend time with our other kids. I have 14-year-old twins. So it’s building resilience for the whole family.

BLOOM: How can the hospital best support parents so they feel able to advocate for their child?

Julia Hanigsberg: I’ve been really impressed with our Family Leadership Program. I think the hospital’s investment in the leadership of families is extraordinary and they can take that into the rest of their lives. When I joined the board of trustees the family advisory used to meet in the boardroom but now they meet in the conference centre because they can’t fit in the boardroom. We’ve trained over 100 family leaders. There are also more informal ways like our Parent Talk groups where parents can create networks that help them learn.

BLOOM: What would you like our parents to know about your plans for the hospital?

Julia Hanigsberg: It’s too early to talk about plans for the hospital. Right now I’m learning and listening and focusing on having experiences as the way I learn. People have been incredibly generous in sharing clients and families with me, encouraging me to participate in clinical team meetings and huddles, to help me better understand how the hospital works from the perspective of families and our extraordinary team of staff. My orientation is to learn the place from the ground up, not from sitting in this office.

BLOOM: What do you see as the hospital’s greatest challenge? Greatest strength?

Julia Hanigsberg: I don’t think it would surprise anyone to know we’re challenged financially, and, but for money, there’s more we would do. Space is an emerging challenge. We’re not there yet, but at a certain point we’ll want to do things and be limited by the lack of space. I think the hospital has made smart, economical and efficient use of its resources.

Everyone in the place has huge ambition and that’s an enormous strength. Everywhere I go, people want to do more and better and I think my role is to find the path that allows them to achieve their ambitions for Holland Bloorview. I don’t need to set out the ambitions. Talk to anyone who works here and they’re excited about what they do and have a huge vision for what that could be.

For a window into Julia's first weeks at the hospital follow her on her blog or on Twitter @Hanigsberg.

Disability is part of their doll's story

By Louise Kinross

In January I wrote about Melissa Shang, a girl who at age 10 got 150,000 people to sign a petition asking American Girl to release a doll with a disability. Melissa has a form of muscular dystrophy. The company hasn't.

Then I heard from the Pots family in St. Catharines, outside Toronto. Pictured above are Emily, Sophia, Rachel and Janneke. Rachel and Janneke both use wheelchairs now and have global developmental delay with no diagnosis.

Their mom Sara sent me a photo (below) of an American Girl doll that Emily and Sophie had adapted to reflect their family's experience. They purchased the wheelchair from American Girl. But "the hand splint, g-tube, tinted glasses (for vision clarity) and ankle-foot orthoses were modified by 'Pot Home Health Supplies,'" Sara says, aka Emily and Sophia. "My kids get more satisfaction out of making the pieces.

"From the very beginning Emily and Sophia insisted we save money for Rachel and Janneke to have a doll in a wheelchair," Sara says. "As they began to visit the American Girl stores and website, they were frustrated to see there were little to no props for girls with disability. What I love about that frustration is that it comes from their own hearts. My hope is that they will continue to see places and things that need representation of all, not just in the doll world, but beyond."

Do your kids adapt their dolls in this way? Please send your pics to lkinross@hollandbloorview.ca and we'll share them.

Photo by Elma Regnerus

Why is it so hard?

By Louise Kinross

"Let me get this straight," my chiropractor said.

"You've had this pain in your neck and shoulders for 28 years, but you've only got $250 to fix it with?"

"Yes?" I said, with a plaintive expression on my face.

I sat on an examining table with my legs dangling in the air, like a child, and the doctor sat in front of me. I'd seen him for a series of sessions a year ago when my knees got really bad. Now my neck and shoulders, which I've had ongoing problems with, were burning.

The night before I had to lay down on my back at 7 p.m.

"It hurts too much to carry my head around," I explained to my husband, who was sitting in the other room.

Shortly after that I called out: "I can't pick up my cell phone."

"Why?"

"It's too painful. I'm lying here with nothing to do. But it hurts too much to hold up the phone."

"Do you know how pathetic that sounds?" he said.

The chiropractor had taken a video of me to show that when I thought I was sitting with my shoulders down and even, they were completely wonky: one was way up and the other way down. When he felt my spine he said it wasn't "where it should be" and he wanted me to have an x-ray.

Why had I let things go so far?

Just the week before when I saw my therapist I told her I was burnt out, even though I was taking a vacation day. "That's what you said the last time I saw you," she said.

I was into the fifth week of a very exciting research project at work: nurses from across our three inpatient units were coming together for 90 minutes a week to write and draw about their emotional reactions to working in children's rehab. I was running the groups with two amazing researchers from the University of Toronto: one the illustrator in residence of the medical school, and the other heading up a new series of humanities courses at U of T, who was also a Phd in English.

But it was something extra, on top of my regular work.

Sometimes I'd do a fantastic interview for BLOOM at work and I'd get so excited about it that I sat up late at night to finish it at home. I was also doing some personal writing at home, so after a long day of writing I'd come home with the intention of "writing" some more.

"No wonder your shoulders are hurting, hunched over like that," my husband said as I sat at the dining room table tapping at a laptop in a distinctly unergonomic fashion.

In the morning there was the ritual of putting my son's brace on his leg and pulling him up to sit on the couch at a 90 degree angle. If I didn't take the time to lift properly, I wrenched my lower back. My husband had done this one too many times and refused to do it again, so we were no longer alternating.

"You can't keep adding more and more things to your plate," the therapist said. "You're already working full out at work and with the extra demands of your family. How about for the next three weeks you don't do any writing at night? Instead, you recover. You take a nap, or you read, or go out or do something that is completely relaxing. You take care of yourself and let yourself recover."

"Three weeks?" I said, already in a panic. "I don't think I can do it for three weeks. No, that won't happen. I'm 50 years old. Time is running out. Perhaps I can tell myself that I will pick certain days when I go home and I don't do anything at night. That sounds more realistic to me."

The therapist looked at me with a sad, knowing smile.

That night I got the stomach flu, and the next day I lay in bed, unable to go to work or do anything. It took me all weekend to recover.

A few days later I was sitting at the chiropractor's, telling him my sob story about my shoulders and neck. And it was sinking in that perhaps there wasn't a quick fix to running myself into the ground like this.

Two years ago I had a similar experience of being 'forced' into slowing down when I broke my arm badly.

I know the research showing that parents of kids with disabilities have higher rates of physical and mental health problems.

When my neck and shoulders seize up, I start to project pain into the future. If it hurts this much at 50, how much worse might it get? That freaks me out, because I have to be there to care for my son. I can't afford to be out of commission.

So here I am, 20 years after my son was born, recognizing that I still haven't learned this lesson properly. You know, the one where they say if you don't take care of yourself, you can't take care of anyone else?

And I need to.

'I do feel sad sometimes, but Kate isn't'

Last week I shared a new comment written on our most popular post The Invisible Mom by Sue Robins. The Invisible Mom is about how mothers of kids with disabilities can face the same social exclusion their kids face. Julie Drurie, mom to Kate, 7, who has a rare mitochondrial disease and took the selfie above, wrote a thoughtful response on her blog Searching For Solid Footing. We've reprinted it below. She made me think about how my perception of my child's exclusion may differ from my child's perception. Interested to hear your thoughts. Louise

'I do feel sad sometimes, but Kate isn't'
By Julie Drury

The first time I read The Invisible Mom I didn’t think that was me. I understood it and felt strong empathy for Aaron’s mom, but I didn’t think I felt the same pain and angst of exclusion as she.

But then I started considering how Kate is ‘included’ and ‘excluded,’ deliberately or not. I reflected on the moments where her differences stand out so starkly and where I hustle to make excuses for her…

…“she can’t hear you.”

“yes, she’s 7…but she’s more like a 3-4-5 year old.”

“she is signing or saying this that or the other thing.”

“well, she could come to the party…but maybe I should come too…to help…and she’ll probably have to leave early.”

She’s the kid who leaves early from school, is often sick, wears the funny helmet, has a tube in her nose, doesn’t speak, sometimes hits the other kids, is often in her wheelchair stroller because of fatigue, runs away and won’t come back, doesn’t understand when you ask what her favourite colour is (but she can tell you her name and how old she is!!). Some (few) make an effort to include Kate, but playdates, birthday-party invites and get-togethers with the girls are not really part of her life, sadly.

She loses her peer group annually as others grow and mature and learn and she is left behind. Her reality is that adults are her friends—and the few children whose parents facilitate them staying engaged with Kate.

Do I feel left out? Sometimes, yes.

Am I sad? Yes, I grieve ‘loss.’

More importantly, does Kate feel left out? No. Is she sad? Nope. She has her friends at school that will change year to year, but that she values nonetheless. She has her friends at Rogers House (Myah, Moon Pie, Buffa, Mat-teww), and her adult friends (Christine, Kat, Erin, Kara, Adrienne, Vanessa, Steffi, Tall Steve, and more) that she loves. She is developing her own friendships and through those connections, I am finding my peer group of moms and friends as well. A different peer group than what you would expect, but a very valuable one.

I don’t think I am an invisible mom. I think people see me. If they don’t, I usually make them see me and Kate.

I wish for so many things for her. I wish for playdates and friends and movies and outings and independence.

I do feel sad sometimes. But Kate isn’t. Not yet. For now she is happy. Like Aaron’s mom I hope she never has to understand or become aware of the pain of invisibility.

'Who is teacher?'

I just read this exquisite piece by Kari Wagner-Peck, above with son Thorin, 8. Thorin attended Grade 1 at public school last year in Portland, Me. Kari is a fabulous writer who blogs at A typical son about raising her son with Down syndrome. Make sure to bookmark her blog. She always has a unique perspective. I can't wait for the next one in this series! Louise

By Kari Wagner-Peck

We started homeschooling or unschooling or what you might call practising loving and respectful learning in September.

This is the beginning of the next chapter in our lives. How we got to THAT is a whole other story I have not wanted to write about. Expect a post on that soon entitled something like: It Was Not Just One Reason.

When I explained to Thorin we were homeschooling he had two questions. The first was easy to answer:

“I call you Kari?”

“If that’s important to you, sure you can,” I said.

“Thanks you, Mom.”

The second question was difficult and painful and probably at the heart of learning at home:

“Who the teacher?” he asked.

“No one is the teacher,” I said.

“No! Who the teacher?”

“We could both be the teacher?”

“No!”

“We are both the student?” I offered.

“No! Who the teacher!” he screamed.

“You need to learn reading, writing and math. I have to figure out how to help you by learning how to help you. Confusing, right?”

Silence.

“Thorin, I am not sure what I am doing, yet.”

“No!!!!!!!!”

“I am your mom. I am learning, too. I don’t want to be a teacher. I want us to be a team.”

Silence.

“Can we be a team? See if that is okay?”

Long silence.

“Can we try?” I asked.

“Okay, Kari.”

THEY say start with what your child loves. So, Thorin and I are writing a book together. My co-author and illustrator (see below) does not want to share anything but the central characters in our story although we have a title, character names and a plot. As a team member I have to honour his request.

Thorin’s word use has quadrupled, reading and math levels have increased more in two months than the entire first grade. Most importantly he is happy again.

I have learned that the greatest teacher is: belief.

Expect more on all of IT.

Illustrations by Thorin.

Tell us your story

What do you want people to know about being a special-needs parent?

What do you wish people understood about parenting a child with a disability or chronic health condition?

Tell us in the comments! Louise

BLOOM media roundup

Happy Monday!

Looking for a read that will make you think? Check out the disability and parenting stories we've collected in the last week. Let us know if we missed a good one! Louise

When the diagnosis is rare, parents may know more than professionals
The New York Times Great examples of why parents are essential partners with doctors in providing the best care for kids with rare conditions.

Discussing disabled sexuality is a radical act RH Reality Check
Why did the media largely ignore a section on sexuality and disabled youth in a critical update to guidelines on teen sexuality by the American Academy of Pediatrics?

Hidden population: Thousands of youths take on caregiver role at home ScienceDaily
While most kids play sports or video games after school, more than 1.3 million American youth spent their free time caring for a family member with a disability or mental illness, according to this study.

For people with disabilities, doctors are not always healers The Washington Post
'I saw blatant examples of unequal and insensitive care to patients with disabilities:' An emergency physician.

Toronto is a 'hostile' place for people with disabilities, academic says U of T News
A University of Toronto professor who studies accessibility says Toronto poses 'unfathomable barriers' to people with disabilities.

Wings for All offering special-needs families an airport dress rehearsal
The Washington Post
For three years the Palkodaty family avoided flying anywhere, convinced that it would be too much for their young son Tushar, who is autistic.

Woman with intellectual disability sexually assaulted on bus with worker nearby
CBC My Region
A 19-year-old Winnipeg woman who needs 24-hour care was sexually assaulted for 10 minutes before her support worker, a couple of rows away, noticed.

'I am different, that is good:' How an actor with Down syndrome is changing perceptions
The Guardian
Sarah Gordy, who appears in Manchester play Crocodiles, breaks new ground by playing a character without a disability.

Mother wins right to end disabled daughter's life ITV News
A ruling allowing doctors to withdraw g-tube feeds from 12-year-old Nancy Fitzmaurice was the first time in Britain a child, breathing on her own and without terminal illness, was allowed to die.

Nancy Fitzmaurice, assisted suicide and assumptions
Girl With The Cane
Commentary on the Nancy Fitzmaurice ruling.

The work of outsider artist Judith Scott sheds light on living with disabilities
The Huffington Post
Institutionalized for more than 30 years and deaf and non-speaking, Judith Scott found her voice through art, forming intricate sculptures of yarn, fabric and other fibres tightly wrapped around an array of found objects.

'Butterfly child' dreams of the Northern Lights Ottawa Citizen video
Jonathan Pitre suffers from one of the most painful conditions known to medicine, a rare genetic disease that causes the skin to endlessly blister.

Kids with autism bullied three times more Disability Scoop
In the largest look ever at autism and bullying, American research shows that children on the spectrum are significantly more likely than others to be bullied.

Scientists implicate more than 100 genes in causing autism NPR Your Health
Researchers have identified more than 100 genes that are mutated in autism. These are spontaneous mutations, not ones passed down by parents.

**Don't forget to sign up for a one-day workshop on bullying at Holland Bloorview on Nov. 29, 10 a.m.-2 p.m. in the Conference Centre. Presenters are SickKids social worker Miriam Granger and lawyers from Stuart Law and Pro Bono Law Ontario. $10 registration fee. Register online.

Pinpoints of light

By Louise Kinross

In The Boy in the Moon, author Ian Brown uses the term 'pinpoints of light' to describe how moments of grace and love could relieve the dark parts of raising his son with disabilities.

I had a few of those moments recently. One occurred yesterday when I was at a research conference. Someone I didn't recognize came up to me, smiled and said: "Are you Ben's mom?"

"Why yes I am," I said, unable to place this person.

He introduced himself as one of the lead people at one of Ben's co-ops. I knew his name immediately but had never met him in person.

"Last year I used to see you dropping Ben off," he continued. "It's been great having Ben with us and he's developed quite a fan-base."

That was a pinpoint of light, unexpected, warm and gratifying.

One of the two co-op placements Ben has this year resulted because I reached out on Facebook to someone I didn't know and asked if he'd be willing to consider my son.

He made a commitment—over Facebook—and followed through. There aren't many people like this in the world, particularly in business.

Another place where the light came through.

Last year I drove Ben to his co-op three days a week because the school board wouldn't provide transportation (even though he is eligible for transportation to school). It was a significant distance from us, and resulted in me being late into work on those days.

This year his principal went to bat for us and we got transportation. It's not perfect. It didn't show up the first day, and it now involves two "milk-routes" that keep Ben on the bus for an hour each way. I started off fighting that, because we had already provided medical documentation that Ben couldn't be on the bus for an inordinate amount of time. But then I noticed that Ben seemed to be managing it okay. So I let it go.

The milk route means an early pickup that gets all of us up earlier in the morning. The bonus? I get in to work earlier, minus the stress of driving like Mario Andretti to get the co-op drop-off in first.

As I was coming home today, thinking about this post, a fear crossed my mind: writing about it might jinx my luck. Maybe I should keep it to myself, I thought. That's what happens when you're used to operating in generally dark and stormy weather. It's hard to trust that the light will break through again. Or, it's easy to dismiss the light—our great luck this year with Ben's placements—by reminding myself that next year we fall into a black hole when Ben ages out of pediatric services. Why get hopeful and complacent now when everything will turn dark again? Why be happy with the things we have set up this year when many will evaporate next year?

Sure enough, Ben got off the van this afternoon and told me that he had a bad morning and refused to work. He was concerned that I wouldn't be happy. This after a generally glowing work report from yesterday.

Who am I kidding? I thought. Why did I even think about writing this post? In my world you only have to wait a few hours and the sky will turn cloudy again.

I guess that's why we need to document and savour the little bits of light, whenever they come.

Composer finds the music in every life

By Louise Kinross

Northern Irish composer Deirdre Gribbin has produced over 50 works—from orchestral music to her opera Hey Persephone!—that have been performed around the world. Her UNESCO-winning work Empire States has played in 28 countries.

Writing music began as a way to express the conflict Deirdre witnessed growing up in Northern Ireland in the ’70s. “I saw things that kids don’t normally see,” she says. “Hijacked public busses blocking the road so you couldn’t go through, bomb blasts. I went to London to study and found myself writing about Northern Ireland. At a time when people couldn’t speak about Belfast politically, I could write about it in my music and I found it a powerful tool.”

Deirdre’s orchestral piece Unity of Being: A Peace Anthem for Northern Ireland was the first international work to be performed in New York City after the 9/11 al-Qaida attacks and was the subject of a New York Times piece. “It made me realize how music could cross barriers, redefine boundaries and have such strong purpose in people’s lives,” she says. “Music didn’t need words to communicate solace, sharing and comfort.”

After her son Ethan was born with Down syndrome in 2006, Deirdre came to see music as a potential voice for people with intellectual disabilities. “Why can’t someone with a learning disability who can’t speak write the most moving or the most joyful or the most angry piece of music?” she says. “If given the right and best technical support, people with intellectual disabilities can be the controllers of their own musical fate.”

Rather than skills-based music therapy outcomes, Deidre is interested in how music making builds self-worth. “If you give someone the skills to make decisions about how they want something to sound—about the shape of the piece or the structure or whether it expresses a certain emotion—it becomes their music, and then they have the confidence to be able to assert their own decisions in other areas of their life.”

Deirdre, who lives in London, is starting a composing group for eight-year-olds with Down syndrome—called Down Right Excellent—which includes son Ethan. “We may use colours or shapes to represent notes or emotions or types of music. I’m going to give them the language of music—so not just describing rhythm as fast and slow, but spikey and energetic, and how that links into emotions. They’ll learn about how to put music together. And if you can hear something that you’ve done, the sense of self you gain from that can really build your self-esteem: ‘I can’t do this and this and this. But I can do this.’”

Deirdre says raising Ethan has had a huge influence on her work. “The expectation when he was born was that he would compromise my work, or that I wouldn’t have the time to write music. But I’ve written some of the best music in the past few years.” Deirdre attributes this to her time being more focused—she goes away on retreats where she can write all day—and a greater emotional freedom in her work.

“I’ve always felt instinctively that it’s important to express emotional states through what I write, but now it’s very much at the centre of what I do,” she says. “I feel much stronger as a person because I’ve had to develop and nurture Ethan’s life and our family’s life. When you’re the parent of a child with a learning disability—and the mainstream is often acutely aware and subliminally critical of difference—you have to develop a side of yourself that is quite defiant and tough and never be afraid to challenge.”

After Ethan was born, Deirdre became interested in human DNA and how it works. “We were told that Ethan had an extra set of chromosome 21 and I came away thinking ‘What’s a chromosome and what does that mean?’” Last year Deirdre set a fragment of genetic code to music while working as artist-in-residence at the Medical Research Council’s Laboratory of Molecular Biology in Cambridge. Hearing Your Genes Evolve is the resulting string quartet.

“I learned that my son and a child without Down syndrome have 99.9 per cent the same genetic code,” she says. “And in that big 99.9 per cent, there are more similarities than differences.”

Deirdre wants to learn more about the content of chromosome 21. “Empathy, which is seen in people with Down syndrome, is genetic. It’s something in the genetic information that’s not just nurture. We should be looking not just at negative effects of Down syndrome, but at what it enhances.”

And instead of only measuring human qualities that have a market value—such as intelligence or athleticism—we should be interested in “things that make us better people, such as being selfless, caring and open.”

Photos by William Suarez

Why I chose a 'special' school for my child

By Anchel Krishna

Having a child means making lots of decisions. When you have a child with special needs, you make decisions on top of decisions.

Last year, as my husband and I prepared for our daughter, Syona, to enter junior kindergarten we had a big decision to make: Enrol Syona at our local school or in a specialized three-year program that incorporated the standard curriculum with additional supports and therapies.

The local school meant a connection to our community—to other parents and kids who live close by. The special program meant three extra years to give our daughter a head start with smaller classes and therapists and teachers looking for ways to incorporate therapy into her day-to-day activities vs just setting up supports for her.

We participated in transition meetings, made lists, weighed the pros and cons and decided to enrol Syona in the specialized program.

One of my biggest fears as Syona’s mom is that people will look at her physical disabilities and communication challenges and underestimate her abilities. I’ve seen and heard how quickly and easily that happens in the school system. I figure three years of the specialized program—and the reports from teachers and therapists it'll generate—as well as opportunities for Syona to progress and mature will prepare her to transition well to our neighbourhood school.

Syona’s had a strong start so far in the specialized program. Despite the long commute, she has a great bus driver and has made some strong relationships with the kids on her bus. This is a great way for her to start and end the day. She has a wonderful and warm classroom team who truly care for her.

There have been tears (lots of tears). But that was to be expected. Syona’s an only child who spent the summer with her grandparents and several caregivers. She does a lot of one-on-one therapy. Up until this point, almost every adult in her life has provided her with undivided attention. At school, she’s learning to be a little more independent, play by herself and with her peers and, yes, that sometimes means a few tears. I know Syona will power through them and thrive at school.

When Syona comes home from a long day and asks to go to the park and I have to say no—because there's only just enough time to have dinner and a bath before bed—I wonder if we made the right decision.

But when she comes home and tells me about going swimming, or riding an adapted bike for the first time, I know we’ve done the right thing. As parents we make the best decisions we can at any given moment. I’m looking forward to what the next three years will bring.

Anchel Krishna is manager of communications at the Children's Treatment Network. She recommends these two CTN e-bulletins on Transitions to school and Special needs and the school system. Anchel blogs about special-needs parenting at Today's Parent.

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Please check out the fall issue of BLOOM.

I'm sharing my editorial below, which is about an amazing opportunity to donate to BLOOM and see your contribution matched by the Coriat family, doubling the impact. Please take a moment to read and share widely. Thanks! Louise

BLOOM is the voice of parents raising children with disabilities—a voice that’s missing in many mainstream parenting forums.

Now Canadian parents David and Lynn Coriat challenge you to raise that voice so that more families here and around the world can benefit from BLOOM’s online community of information, inspiration and support.

Make a donation to support BLOOM by December 31, 2014 and the Coriat family will match your gift, dollar for dollar!*

Who are the Coriats?

They’re parents of a child with a disability, like you and me. For the last three years, David and Lynn have championed BLOOM with a substantial donation that funds the blog, print magazine, BLOOM speaker series and e-letter. Their vision and generosity have allowed Holland Bloorview Kids Rehabilitation Hospital to lead the international dialogue on childhood disability, bringing our award-winning content to families and professionals everywhere.

David and Lynn believe in the power of BLOOM. Do you?

BLOOM is an international phenomenon. We have readers in 166 countries.

When parents visit the BLOOM blog or open our magazine, they see and celebrate families like their own. They feel less alone, more empowered. They get the best parent and professional advice and the latest on clinical and research advances. But most importantly, they’re united in an international community that speaks their parenting language. They feel heard and understood.

In this issue you’ll read stories from families in the UK, Italy, Holland, United States and Canada. No matter where you live, they will resonate.

Here’s how one parent describes the impact:

“Every issue makes me smile, shed a tear, write down an inspirational sentence or piece of advice or lead me to research a new product or technology. I love the holistic, family-centred approach…especially the fact that sibling issues are not ignored. The stories in BLOOM touch and change lives. What a wonderful gift.”

We’re asking for your support in order to reach more families with increased stories and content, meeting the needs expressed by our readers. Please consider a donation now, knowing that the Coriat family will match your gift and double its impact!

Every bit counts!

With gratitude, Louise

*The Coriat family will match any donation to a maximum of $50,000.

To make an immediate gift online, please visit our secure website at: http://hollandbloorview.ca/BLOOM

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.

'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.

When is giving up a rehab goal a smart thing?

By Louise Kinross

Children’s rehab is often focused on improving a person’s ability in a specific area or in achieving functional goals.

The use of “goal” language seems to be directed primarily at children with disabilities. As a kid without a disability, I don't recall a lot of talk about my goals growing up. I didn’t feel external pressure to “reach my potential”—which seems to be the marker for success placed on every child with a disability.

The idea of achieving your potential implies that we all have a fixed amount, a certain size of box, if you will, from which we can draw a limited amount of ability. Some have larger boxes, some have smaller ones, but at some point we can measure or see whether a person has made full use of their “box.” Or can we?

I was thinking about this because as my son gears up for a year of full-time co-op—his last year of high-school—I found myself agonizing over the fact that he still doesn’t have a reliable form of communication. What is holding him back in his co-op is the ability to communicate freely with the public. He has a voice app on his iPad—Proloquo—but he doesn’t like to use it. He would rather gesture or have his signs interpreted by an EA.

His report card noted that he has to start using Proloquo more. That got me wondering whether we should look at a different voice app. And that led straight to hopelessness. Because I’ve looked at all of the devices and spent years trying to find something that works for him. I am sure that full months of my life have been devoted to programming systems that were never adopted long-term.

I keep hoping that Apple will develop a voice app or device that is as intuitive and user-friendly as its other products. However, I’ve been hoping that for more than 15 years. I even began a small campaign of tweets to Apple CEO Tim Cook last year that went unanswered. I think the big computer makers have let our families down in not bringing their expertise to the AAC table.

That said, my son is a young man now, not a small child, so any use of a voice device will depend on it being something that he wants, not something that is thrust on him.

Despite my cynicism, I found myself online looking at videos of children using different voice apps and wondering why my son’s use had never taken off in the same way. It wasn’t for lack of enormous efforts on my part. In my son’s defence, I find them cumbersome and slow and not easily portable. I personally wouldn’t want to use one.

Last week I saw this headline in the New York Times and got a sick feeling in my stomach: The Kids Who Beat Autism. Has autism become an opponent?

The article refers to two small studies that showed that 10 per cent of kids with autism “shed” their symptoms, but there didn’t seem to be any rhyme or reason as to why (they included kids who didn’t receive intensive ABA therapy). “Recovering” from autism is positioned as the “optimal outcome” and we’re made to feel terribly sorry for the families whose kids don't progress.

(Though there is this beautiful final paragraph where a mother of one of the unrecovered shares her thoughts: The idea that Matthew won’t recover no longer pains Jackie. “At some point,” she told me, “I realized he was never going to be normal. He’s his own normal. And I realized Matthew’s autism wasn’t the enemy; it’s what he is. I had to make peace with that. If Matthew was still unhappy, I’d still be fighting. But he’s happy. Frankly, he’s happier than a lot of typically developing kids his age. And we get a lot of joy from him. He’s very cuddly. He gives us endless kisses. I consider all that a victory.”)

Thankfully, the magazine piece was followed by this post in Motherlode called The Kids Who Don’t Beat Autism, by Bad Animals author Joel Yanofsky, who has a teenage son with autism.

Yanofsky notes that when he saw the headline—The Kids Who Beat Autism—“I didn’t want to discover all the things my wife, Cynthia, and I could have done and didn’t. That thought keeps me up enough nights as it is.” I think it's dangerous and wrong when parents are made to feel that they control the outcome of their child’s disability. And we don’t need our kids to beat or stand in opposition to something that is a part of their identity.

Recently I was reading Think Like A Freak, the new book from Steven D. Levitt and Stephen J. Dubner, the authors of Freakonomics. In Think Like A Freak, the economist/journalist duo encourage us to take a new approach to solving problems. What intrigued me was their final chapter—The Upside of Quitting—in which the authors argue that giving up unattainable goals is a smart move.

I wondered how this idea might be helpful to parents of children with disabilities like me.

Levitt and Dubner note that quitting anything is tough because of American homilies like: “A quitter never wins, and a winner never quits.” In Western culture quitting is synonymous with failure, they say. And once you’ve invested heavily in something, it feels counter-intuitive to quit. However, “You cannot solve tomorrow’s problem if you are not willing to abandon today’s dud,” they note.

“Civilization is an aggressive, almost maniacal chronicler of success,” they write. “This is understandable—but might we all be better off if failure carried less of a stigma? Some people think so. They go as far as to celebrate their failures with a party and cake.”

They then recount how scientists in an invention lab at a technology firm test out ideas, with the goal of ‘failing fast and failing cheap,’ when necessary. The head engineer prefers the terms ‘failing well’ or ‘failing smart.’

They also reference a series of small studies by Carsten Wrosch, a psychology professor at Concordia University, that found that people who let go of unattainable goals saw physical and psychological benefits.

“They have, for example, less depressive symptoms, less negative affect over time,” Wrosch is quoted as saying. “They also have lower cortisol levels, and they have lower levels of systemic inflammation, which is a marker of immune functioning. And they develop fewer physical health problems over time.”

Of course Wrosch notes that deciding when a goal is unattainable “is the $1 million question.”

There are all kinds of studies showing that mothers of children with developmental disabilities have higher levels of anxiety, depression and chronic stress, as well as reduced immune function and increased cellular aging, than those raising typical kids. They also have poorer physical health.

I’m just wondering what part our “Anything is possible” and “Just Do It” culture plays in keeping parents trapped in rehab goals for their kids that may not be attainable? I know it won't be a popular idea, but it seems that for many parents “letting go” of a hoped-for, but not practical, outcome could be physically and mentally healing.