Thursday, October 30, 2014

Sadie at the salon

By Emily Urquhart

My three-year-old daughter, Sadie, was getting her hair cut at a new salon. This would be enough to set any parent on edge—the possibility of tantrums, a stranger wielding a sharp object near your child’s face—but I was most worried about the inevitable comments.

My daughter has albinism, which means she has white-blonde hair, little pigment in her skin and has pale blue eyes. She has low vision, so facial expressions and the identity of people standing at distances more than 10 feet can be difficult to decipher.

At our regular hair salon, which is bubble-gum pink and caters to the pre-tween set, I’ve put a note in Sadie’s file so that the stylists won’t make inappropriate comments or ask questions about her hair. A few times employees have missed the memo but mostly they stay mum, Sadie watches part of Frozen, and she walks out with a lovely little page-boy cut.

Today, however, we were in the middle of an extended visit with my parents in their small town and Sadie’s hair needed a trim, so I reluctantly brought her to a tiny salon on the main street. Deb, the owner, styled my grandmother’s hair until she died in 2007, and she’s cut both my hair and my mom’s hair. Four generations down, she was clearly perplexed by my daughter’s icy locks.

“It looks like there isn’t any colour at all,” she said and then asked if Sadie’s hair had been bleached by the summer sun. My mother was with us, and she stepped in to explain albinism. I felt my chest tighten. My little girl sat silently in the adult-sized chair, propped up on a phone book and engulfed in a silvery hairdresser’s cape.

Then, the doorbells chimed and a soft-bellied farmer stepped into the shop.

“No time today, Al,” Deb said. “I’m booked.”

Al sighed, tugged at his suspenders and lingered in the doorway for a moment.

“That’s some white hair,” he said nodding towards my daughter. “I’ve only seen that kind of hair once before. The Millers over in Belford. The whole family had white hair like that.”

He was referring to a nearby town (I’ve changed the surname and the location). I don’t know this family but it’s quite possible their hair is the result of the same genetic condition that affects my daughter. Albinism is rare
occurring in 1 in 20,000 to 40,000 depending on the type—but it could be connected. 

It was an interesting thought, but mostly I wondered, Couldn’t this just be a haircut? Why do so many of our interactions need to be a science lesson? Most importantly, How was my daughter interpreting this interaction about her appearance?

When Sadie was younger strangers’ comments sometimes wounded me but I didn’t need to worry about how they affected the tiny white-haired infant asleep in my arms. People asked me if I dyed my baby’s hair (um, no), or if her hair was white (yes), or if her father had very light hair (nope). Occasionally I took the opportunity to educate the inquirer on recessive genetics but mostly I politely answered the bare minimum and went on with my day.

Now, the comments and questions are often pointed in my daughter’s direction. It is not her role, at three, to educate the overly curious masses. Mostly these are compliments on her hair, and on the little pink-framed eyeglasses she wears to correct what she can of her vision. I encourage her to say thank you because it’s polite, but sometimes I wonder if doing so feeds into an idea of otherness that I don’t want her to grow up with. These people, however kind and well-intentioned their comments might be, are singling her out as different—over and over.

It is not an exaggeration to say that Sadie and I field questions and address observations every day. Aware that my daughter is listening, I respond with confidence and warmth, but I’ve also walked away or ignored people—especially when they speak loudly about my daughter but not to her or to me.

As a parent I am still navigating uncharted territory. What I know for certain is that how I respond sets the tone for how Sadie feels about these encounters. I can’t stop them from happening but I can mitigate their impact on my daughter. At least for as long as she’s by my side, and when she’s not, she can follow my example.

For my part, I can learn from other parents of kids with albinism as well as people who share my daughter’s genetic condition. Since Sadie was one-and-a-half we’ve attended two National Organization of Albinism and Hypopigmentation conferences. It was a relief to connect with other families like us and to vent about some of our common frustrations. Everyone there had faced remarks about their or their child’s appearance. There was an entire session on how to navigate these tricky social experiences.

This presentation made me feel less alone and offered some excellent tips, like having a short, rehearsed story at the ready for difficult occasions. But it was another mom who shared the most surprising piece of information. She said her eight-year-old daughter loves having albinism because of the compliments she gets on her hair and glasses. The barrage of unsolicited comments has actually worked to boost her confidence. I had never considered this possibility.

Leave it to an unjaded child to rearrange how you see the world. What I’d seen as intrusions, this little girl viewed as self-affirmations. She taught me that how you receive comments are as important as how you react to them. If you perceive these words as arrows they will wound you and leave visible scars. If you receive them as gifts, they have the ability to enrich your life.

Not that every interaction involves a compliment. Like the farmer in the hair salon, many people simply state their observations. But I have a way of turning these situations around.

“Her hair is really white,” the cashier/mom-at-the-park/stranger-on-the-street/fill-in-the-blank will say.

“I know,” I’ll respond, remembering the little girl from the conference. “Isn’t it beautiful?”

Emily Urquhart is a folklorist and writer. Her book about genetics, parenting and storytelling, Beyond the Pale: Folklore, Family and the Mystery of our Hidden Genes, will be available in March 2015 from HarperCollins. Photo by Dean Kalyan. 

Wednesday, October 29, 2014

Sister story: Daniel makes me who I am

By Anna Penner

As the youngest child in our family, I grew up accepting my brother Daniel's differences as a given.

I don’t remember Daniel ever being able to walk or communicate. I don’t remember a time when he was progressing developmentally. I don’t even remember the time he almost died. For me, Daniel has just been Daniel, the way he is.

Our older brother Andrew does remember Daniel before he started to lose his skills. Andrew
 used to pray that Daniel would be healed. Then he’d run to Daniel’s side, only to find that nothing had changed. I don’t remember ever praying for healing.

In fact, I was so accustomed to disability as a young child that I walked into the home of some new family friends, looked around, and asked my mom “where’s the handicapped person in this family?” Disability has always been a part of my life and it has had a huge impact in forming who I am today.

Daniel has
Batten disease, which is a neuro-degenerative disease. He functions like a six to nine month old. He can’t talk or walk or feed himself, and he wears diapers. We can tell if he is happy or upset but we can't discern what he wants or what would ease his discomfort.

When I was in second grade, our brother Andrew moved away and I assumed the role of the oldest child. Soon I was changing diapers and feeding Daniel through his g-tube. By high school I was taking my parents up on the offer to babysit Daniel to earn money, rather than go out with friends.

The year I entered college, Andrew and my parents became legal conservators for Daniel but I was left out of the process. The legal team suggested that the court would look unfavourably on an 18-year-old taking on this role.

Ten years later I became a legal conservator and the weight of my responsibility for Daniel was simply made official. I feel this responsibility in different ways.

For example, when I think about where I might move for my career, I think about how that will affect Daniel. When I start dating a new guy I wonder if he can ever fully understand the responsibility we will carry for the rest of Daniel’s life. I wonder if the guy carries the gene for Batten disease and if our children could have it. When we plan family vacations we'll have to think about the type of car we rent and where we're staying to make sure it can accommodate a wheelchair. It’s just part of life with Daniel.

The few times a year that I am in town, I go visit him in his group home. Most of those visits are not what I would call enjoyable. I feel obligated to go visit him, and guilty if I don’t. I feel guilty that I don’t visit more often, but after visiting I come away feeling like he probably doesn’t even care. When I walk into his home and call out his name he often turns away and ignores me as if to show his displeasure for my prolonged absence. And yet I continue to subject myself to the torture of simultaneously feeling guilty for "not doing more" and "not wanting to do more."

But even with all of these mixed emotions and uncertainty about how to be the best sister to Daniel, I wouldn’t change it.

Do I wish he could communicate with us? Absolutely! Do I wish he wasn't in pain? Of course! Can I imagine what my life would be without him? No way!

While my friends probably wouldn’t call me a patient person, I know I'm far more patient than I would be if Daniel had developed typically. I know I'm much more understanding and empathetic to those who are overlooked and misunderstood. All of these experiences led me to enter a graduate program in Sociology so that I could look at how children are affected by having a disabled sibling.

My early findings show that in the United States, girls who have a brother or sister with disability tend to get half a year less schooling than their female peers with typically developing siblings. For boys there doesn’t seem to be a difference. While these are raw statistics and do not fit any one individual perfectly, they reveal a disturbing trend.

Every time I see the disadvantage that girls with disabled siblings face, I realize how fortunate I am that I'm even in graduate school and that I have never felt like my parents expected me to care for Daniel more than our brother Andrew—just because I'm a girl. 

My parents don't expect us to be responsible for him financially when they pass away. When I browse message boards for adult siblings I realize how truly fortunate I am in that respect. While there was a lot going on behind the scenes that I didn’t know about growing up, my parents did the best to give each of us the best family life possible. 

My parents also pushed us to perform to the best of our abilities and not take anything for granted. While I sometimes felt the need to make up for Daniel’s deficits, that was never something I felt my parents expected of me. They wanted me to use the gifts that I had and realize that they were just that: gifts. I could just as easily not have had those gifts. They also helped me use those gifts to be a blessing to others. If my experiences, good and bad, can help other siblings out there, then it is all worth it.

With this in mind, I started looking at how siblings fare as they grow up. Although some sociologists have studied children with disabilities or their parents, we siblings have gone largely unnoticed. We recognize that a child with special needs requires additional therapies and that often takes up the family’s time and money. But how does that affect their siblings?

When I look back on my childhood, I can’t think of anything my parents could have done differently. They did not take my commitment to Daniel for granted. They did their best to make sure we were not held back by Daniel’s limitations but also made sure we were engaged in the community as a family. My parents would bring Daniel to my basketball games and I was expected to attend his field day at his special school. This was just what family did. Daniel supported us and we supported him. My parents didn’t make a big deal about it; that’s simply the way it was.

I keep a photo next to my work computer of my family from when I was three years old, right before Daniel almost died. I look at the children in that photo who have no idea what life has in store for them. Andrew and I don’t know what additional struggles we'll face because of our brother's disability. We don’t know how quickly we'll have to grow up compared to our peers.

Next to that old photo I have a recent picture of me with my brothers. In this one we are grown up. The photo captures our personalities. We are happy people. We aren’t jaded by the experiences we did or didn’t have growing up. We easily integrate the wheelchair into our pose. It is just who Daniel is, and that is what makes our family our family.

When people ask what it was like growing up with a special-needs brother I don’t always know what to tell them. It is the only life I have ever known. While I would not wish the pain of it on anyone, I also know that Daniel’s laugh is the sound of true, unbridled joy, and that all of our experiences together—good and bad, easy and hard—have made me who I am. I wouldn’t trade them for anything. 

Anna Penner is in the second year of a PhD in Sociology at the University of California, Irvine.

Tuesday, October 28, 2014

Star-studded 'Serenade' benefits Beverley School families

By Julie M. Green

What does indie music have to do with children with special needs? 

Toronto singer/songwriter Hayden Desser and his wife Christie Greyerbiehl worked tirelessly to marry the two for one extraordinary night last Saturday. 

The result was Dream Serenadea concert at Massey Hall to benefit children with developmental and physical disabilities at Beverley School in Toronto. The evening was spectacular, with performances from Feist, The National, Sarah Harmer and Billy Talent, to name a few.

Like many of us, disability wasn't on Hayden's radar until someone he lovedhis daughterwas affected. And while much has been done to raise awareness of disorders like autism, there's a glaring lack of funding for therapies and family support.

Three years ago my son was diagnosed with autism at Holland Bloorview. Aside from a block of publicly-funded speech therapy, any support he's received has been paid for privately, by us. Friends and family are staggered when they learn that this is our reality. I know of too many couples forced to re-mortgage their homes or cash in life savings (assuming they're lucky enough to have savings) in order to afford programs for their children.

With my husband’s family overseas, and my own family living several hours' away, respite is virtually non-existent. And our son's needs are such that we can't get the neighbourhood babysitter to look after him while we take a much-needed break.

Demand for public services outstrips supply. Many children simply aren't getting the help they need, when they need it. Some are rejected for programs they should qualify for, while others sit on wait lists for years, missing out on early interventions so vital to their development.

When searching for childcare for his daughter, Hayden discovered firsthand how hard it was to find an appropriate program. Today, his daughter is a student at Beverley.

Hayden created the annual Dream Serenade to support this cause close to his family's heart.

Proceeds from the inaugural event will fund assistive technology and a custom green playground at Beverley School and also provide respite services to families.

When artists lend their voices to meaningful causes, the result is a thing of beauty. On Saturday night, the atmosphere at Massey Hall was electric. 

But oddly, the highlight of the evening wasn't the Barenaked Ladies goofing around on stage. It wasn't the haunting tones of Matt and Aaron from The National, or the audience singing along to Feist's hit "1, 2, 3, 4." It wasn't even Hayden's moving tribute to his daughter in a new song.

No, the highlight was video footage of the lit-up faces of the Beverley kids during an impromptu jamming session with the performers the day before. 

See you at next year’s Dream Serenade!

Julie M. Green runs a special-needs blog at Yummy Mummy Club. Check out the photo of her below with her son. Photo of the concert above by Farida Peters.

Monday, October 27, 2014

'There is something magical about this place'

By Louise Kinross

Stephen Dustan is a 23-year-old rehab services student doing a placement at Holland Bloorview. He works with life-skills coach Sarah Keenan, meeting youth in the community to help them set independence goals. Stephen knows our hospital intimately. As a child with cerebral palsy he attended our integrated kindergarten program. Since then he’s been an inpatient and outpatient; a Spiral Garden camper and volunteer; a high-school co-op student in our integrated kindergarten (working with his old teacher Paul Alcamo); and he now works part-time as a recreation assistant with our inpatients. One of our family leaders suggested we interview him.

BLOOM: Why did your parents choose our kindergarten for you?

Stephen Dustan: I think what attracted them most was the fact that I would have therapy and be in a place that was equipped to handle my needs. They loved the idea of it being integrated with community kids because that gave you such important skills of being able to articulate your disability to able-bodied kids, which is something you’re going to do lifelong as a person with a disability.

BLOOM: What do you remember about our school?

Stephen Dustan: I remember having my disability explained in a way that I understood and in a way that I could explain it to other kids. My 'go-to' is that my brain got cut-off from oxygen at birth, damaging the way my muscles communicate to my brain. So my muscles are tighter and don’t grow properly like normal kids’ muscles do.

BLOOM: Did that explanation satisfy most kids?

Stephen Dustan: They often gave me a blank stare. It kind of went over their head but it kind of sunk in. I found my willingness to explain it beneficial. Kids are just curious, they’re not mean by nature, and if you provide them with an answer, they usually were pretty receptive and understanding.

BLOOM: What was it like to move to your local school for Grade 2?

Stephen Dustan: The moments when I would feel different from the class were when everyone was getting ready for recess, especially in winter, and it would take me longer, so I’d have less time outside to play. Getting an educational assistant in place for me was difficult and took some time. But I was good at self-advocacy and stating my needs. So I asked whether I could get ready five minutes earlier than the class. My disability was never an issue for me socially. I have an older sister and I had the support of her and her friends so the kids in my class gave me respect. I always had friends to confide in and rally around me. It wasn’t until Grade 8 that I experienced some bullying.

BLOOM: What happened in Grade 8?

Stephen Dustan: I did my last year of elementary school in a new school that opened in my neighbourhood, so I was starting again without friends. I fell into a group of friends that were kind of mean to each other and very political. I did experience some bullying and I definitely can relate to the isolation that that causes: the feeling of not wanting to go to school; hearing whispering and thinking it’s always about you. I told my friends and parents but I never got the authorities involved. I waited it out until high school and it got a whole ton better then. I remember on the first day of high school I was really nervous and I came through the doors on my scooter and there were three of my old friends from elementary school and instantly I knew that it was going to be fun.

BLOOM: What is your university program like?

Stephen Dustan: I found this York/Seneca rehab program where you get your BA in psychology, which I now have, and then a certificate in rehab services. It’s a general program that covers all aspects of rehab. What I like most is that I had the opportunity for field placement.

BLOOM: What did you do as a placement?

Stephen Dustan: Two years ago I worked with The Centre for Dreams, which is a day program for adults with developmental disabilities in Markham. I worked with clients on social goals, life skills, self-care and vocational skills. I had never worked with clients with developmental disability and it was a really great experience. I got a new appreciation for how honest people with developmental disability can be, how kind they can be, how open hearted they can be. It was a privilege to work with the clients and the staff.

BLOOM: What are you doing in your placement here?

Stephen Dustan: I’m in therapeutic recreation and life skills working in the community with Sarah Keenan. I’m learning about the life skills process, the different ranges of goals that clients set and how to achieve these goals. It’s very solution-focused.

BLOOM: Have you found anything about the work surprising?

Stephen Dustan: I knew I would like it, but the amount I like it surprised me. Life-skills coaching is definitely something I could see myself doing and having this experience with Sarah helps me in my job as a casual staff on the inpatient unit being a recreation assistant. I can apply what I’m learning to both situations.

BLOOM: What is your favourite part of the work placement?

Stephen Dustan: I love the element of counselling and coaching and being a part of someone’s development. My future goal is to pursue a master’s in social work and get into counselling.

BLOOM: Does it seem unusual to you that you spent so much time here growing up and now work here?

Stephen Dustan: Holland Bloorview was such an integrated part of my life. I never had any negative feelings around this place. For example, I didn’t connect it to the more traumatic elements of my recovery after my surgeries when I was an inpatient here. It was physically painful to do rehab, but it wasn’t emotionally painful or painful in a way that would make me not want to come back.

BLOOM: How would you describe Holland Bloorview?

Stephen Dustan: It’s incredibly unique and alive. For me it’s been a place of recovery and opportunity and it still is. There is something magical about this place, especially the Spiral Garden program. I went there when I was little and I later volunteered there. They’re phenomenal at putting this element of imagination, of magic, into a place that traditionally shouldn’t have any. From my time working at Spiral Garden and on the inpatient unit in general I’ve come to see the amount of work and organization that go into creating that recreation hour with the clients gardening. How many people pour their heart into what they’re doing, the amount of organization and heart and energy it takes.

BLOOM: Has your view on disability changed over the years?

Stephen Dustan: When I was a kid I always had this idea that you’re not disabled, you can do anything a normal kid can do it will just be a bit more challenging or you’ll do it differently. That helped me tremendously as a kid, but now as an adult I can recognize that it’s not a matter of me not being disabled. Disability can be an identity, a social identity. So much of my strength has come from 'being disabled' that I no longer see it as a weakness or something you have to distance yourself from or deny. It’s something you can accept and in some ways celebrate.

BLOOM: What are some strengths that have come from your disability?

Stephen Dustan: I think there’s a depth, an internal space that I have to hold things, to connect with people, to understand people’s struggles and emotions. Because I’ve been placed in intense situations that most people don’t experience, I’ve got insight into where strength and hope come from when it’s really dark. I know that that light is inside everyone and you have to find it and if you can relate to it in an authentic and real way, you can make that light brighter in yourself and in someone else.

BLOOM: So disability isn't something you need to 'overcome?'

Stephen Dustan: No. I’ve done a few disability studies courses that opened my eyes to the idea that disability is really a matter of social barrier and not a matter of something being biologically wrong with a person. It’s not about overcoming tragedy. It’s more about transforming tragedy into triumph, but not in the sense that you move past it or get over it. You accept the disability with such wholeheartedness that it no longer is something that impedes you on your path.

BLOOM: What was it like to come back as a placement student in the integrated kindergarten you had gone to as a young child?

Stephen Dustan: So many memories that were foggy came flooding back. Paul is exactly the same in every way I remember him. He still gets the most stoked about dinosaurs of anyone I know. I remember as a student I knew every dinosaur’s name and now I can see why I was so passionate about that topic—because Paul was.

BLOOM: What impact do you think you had on the kindergarten students when you came back?

Stephen Dustan: I hope they can see themselves in me and we have that connection. It’s the idea of 'Hey, I made it, I’m doing well and you can too.' I hope they take from my example that they too can be a part of this world in a real and authentic and powerful way. I try to remind myself that I’m a role model and to hold myself accountable to that.

Here's a photo of Stephen as a co-op student in the integrated kindergarten. By Paul Alcamo.

Friday, October 24, 2014

Two BLOOM folks come to town

By Louise Kinross

I met this amazing woman Helen Hoens (left) on Wednesday night. A year ago she stepped down as New Jersey State Supreme Court Justice, saying she developed the qualities essential in a judge by raising her son Charlie (right), who has severe autism.

This afternoon she’s speaking on a parent panel at the Geneva Centre’s
Autism 2014 conference in Toronto. You may remember this BLOOM piece she wrote for us.

I met up with Helen and Montreal author Joel Yanofsky at a pub at the conference hotel. Joel wrote
Bad Animals, about raising his son Jonah with autism, and spoke on a dad panel at the conference yesterday. Take a look at this BLOOM video he did with us about writing his book.

Can you imagine how fascinating it was to chat over dinner with these two folks?
Helen is a brilliant firecracker and Joel is funny and thoughtful and honest.

Wednesday, October 22, 2014