By Louise Kinross
This morning I woke up with a sense of dread. My chest felt like an aching black bruise.
I'd read this piece in The New York Times Magazine about pregnant women and anti-depressants last night.
Somewhere between my reading and the hours I'd spent asleep a thought had taken root in my mind: Maybe I caused my son's genetic condition. And now I was gripped with terror.
I had to get up and reread this piece I wrote a few years ago, about how parents tend to fall down a rabbit hole of "why" when their child is born with a disability. And how we're determined to find a storyline, or cause and effect, that starts with something we as parents did wrong, even if it doesn't make sense.
I had to remind myself that my son's genetic condition happened at conception, not because I was on a low dose of Prozac while pregnant (to keep severe, recurrent depression at bay).
Thankfully, over the years I'd had contact with Dan Wells, a University of Houston scientist who'd isolated one of the genes affected in Ben's syndrome, and he'd explained how the random deletion occurred.
The most likely reason was something called "unequal crossing over." When my husband's chromosome eight exchanged parts with my chromosome eight, to ensure more genetic diversity, a tiny piece was left out. He likened it to a green ribbon and a yellow ribbon binding together to become a 150-inch green and yellow ribbon. But two inches were cut out in the middle and the ends reattached. Chromosome eight has about 150 million genetic letters and my son's is missing about two million. "There are some places in the genome where you could cut out two million letters and it would have an almost unnoticeable effect," he told me.
The cause of my son's genetic condition, Dan said, was random and couldn't be linked to an identifiable cause. And then I read a study showing that the error was more likely to occur in the sperm than the egg, anyway.
"There's nothing you could do to reduce unequal crossing over," Dan said.
So how is it that 21 years later I could be hit with such a massive sense of guilt?
We know from the March of Dimes that the cause of up to 70 per cent of birth defects is unknown. It follows that in most cases a woman can't control whether her baby is born with a disability. But this isn't a storyline we're comfortable with as a culture.
This paragraph from Andrew Solomon's New York Time piece resonated: "We have defined pregnancy as a universal Lent in which a thousand talismanic things must be forsaken for the health of the developing child. The conventional wisdom in the United States is that women should not sip half a glass of wine during pregnancy, or do the wrong exercise or take prescription medication of any kind. Some women find these relinquishments reassuring; they support an illusion that the mother's behaviour can guarantee a healthy baby."
And the corollary is that if your child is born with a disability, you did something wrong.
By Louise Kinross
A couple of weeks ago I got to meet the most adorable child you see above. His name is Branko, and he's almost four, and his mom Jennifer Philp Zakic had written this exquisite piece for BLOOM about having another child after Branko was born with a rare genetic condition.
Jennifer called me from the lobby at Holland Bloorview to let me know that Branko was in the rehab gym on the second floor taking his first steps in physio.
So I got to race up and meet Branko and his mom and dad and sister, and watch this precious little boy hold his arms down tight at his sides to stabilize himself, kind of like a penguin, and take small steps back and forth between two tables (see photo below). His task was to pick up coloured plastic bugs from one table and bring them to the other table where he matched them to pictures of the bugs.
Branko was ecstatic with his progress and it was a beautiful moment to share.
To read more about Branko, check out this long interview with his mom: Branko, 3, has bones growing out of his chest.
By Louise Kinross
I was so psyched when I heard that British toy company Makies was creating dolls with disabilities and differences, like a birthmark on the face, in response to the #ToyLikeMe campaign run by parents of kids with disabilities.
So when I saw this New York Post piece by Kirsten Fleming criticizing the move, I was puzzled.
Kirsten writes that she has a "massive birthmark" on the left side of her face. Growing up with a doll that looked like her would have "magnified the very thing I learned not to focus on," she writes. And more than that, she argues that creating dolls with disabilities or "quirks" that set them apart is "code for condescending pity."
I think Kirsten is wrong.
When our family adopted two children from Haiti 10 years ago, it was painful to take them into a mainstream toy store and find only white dolls. What does it say to a child when they don't see themselves mirrored in the culture around them?
Creating dolls
that look like real kids, whether it's different races or abilities or with birthmarks, doesn't generate
"pity" for those kids. It allows those kids to see themselves
reflected back, and it allows their peers to make kids with differences
part of their imaginative play.
Last year 10-year-old Melissa Shang and her sister Eva got almost 150,000 people to sign a petition asking American Girl to release a doll with a disability storyline. Melissa has a rare form of muscular dystrophy and is the only student in her class who uses a wheelchair. "I hope they learn how it feels to be in a wheelchair and how it feels to be such an outsider in middle school," she told BLOOM in an interview. "Most importantly, I want them to know I'm just like them."
American Girl declined, missing what appeared to be a slam-dunk marketing opportunity.
I think Kirsten Fleming is a lone voice. And there's something mean-spirited about her words, as if she's really never gotten over being singled out for her own birthmark.
In her piece she recounts the story of a family with a toddler with red birthmarks covering her legs in this way: "They complained that when they went out, her splotchy legs drew persistent stares. How inconvenient for them."
What do you think?
By Louise Kinross
There’s been so much research recently about how chronic stress puts parents of kids with disabilities at greater risk of physical and mental health problems, including the suggestion that it can cause us to age faster.
That’s always made me feel pessimistic and kind of doomed.
So when I was sitting on a rotary bike at the club yesterday and saw an interview with the author of The Upside of Stress: Why Stress Is Good For You And How to Get Good At It I perked up.
I figured it was some kind of fluffy book, but when I later pulled it up on Kobo, I realized it was written by Stanford University psychologist Kelly McGonigal and has a lot of research behind it.
Her premise is that most people view stress as toxic and harmful to our health and that this belief creates physiological responses that lead to a self-fulfilling prophecy.
On the other hand, there are people who view stress as enhancing: they see it as improving work performance, improving their health and vitality, and something that can be harnessed to promote growth.
I haven’t gotten far into the book, but McGonigal summons research that suggests that how you expect stress to impact you—either positive or negative—plays a role in how your body responds to it.
She references research that shows “that people who believe stress is enhancing are less depressed and more satisfied with their lives than those who believe stress is harmful. They have more energy and fewer health problems. They’re happier and more productive at work. They also have a different relationship to the stress in their lives: They are more likely to view stressful situations as a challenge, not an overwhelming problem. They have greater confidence in their ability to cope with those challenges, and they are better able to find meaning in difficult circumstances.”
And she says she’s not talking about trivial, garden-variety stress like getting stuck in traffic. People who have used her techniques have found them most helpful when dealing with major life losses.
So I’m just throwing this out there, thinking that you too may want to learn more about this research and how it can apply to parents of children with disabilities.
In the meantime, I'm going to take a brisk walk around Spiral Garden.
By Jessica Geboers
When I was a child doing physical therapy at Grandview, my younger sister Avery climbed into a nearby hand-bike and began riding around the room calling out, “Look at me, I’m disabled too!” She wasn’t trying to be offensive or insinuating that I, somehow, had it better; she only wanted to fit in and have fun like me.
I often ask my mother what she thinks BLOOM readers may be interested in reading about. In addition to her own personal experience of raising me, she now belongs to a Facebook group where moms of children with cerebral palsy share stories and advice. Mom suggested that I write about siblings, given that parents in the group often express concern about not spending enough time and attention on their able-bodied children because their child with a disability requires more care. They also worry, she said, that they might be putting too much pressure or responsibility on their children without disabilities to pick up the slack.
These concerns seemed reasonable, even for larger families with many children without disabilities. Like any good journalist, I decided to begin with some preliminary Internet research to see what had been written on the subject. What I found focused mainly on siblings of children who had severe disabilities and required constant care.
While this is obviously a reality for many families, it didn’t apply to my family. I am moderately disabled and able to take care of myself for the most part. Growing up, my parents always told my siblings—sister Avery, now 17 and brother Jared, 15—and I and anyone else that was around that I was part of the family but that our family didn’t revolve around my disability and me. This meant that while I may have needed extra care, my parents were also mindful to make time for Avery and Jared as well. So, for all the time they spent playing with the toys and adaptive equipment while I went through physiotherapy, it could be said that they were just killing time until Mom dropped them off at gymnastics or hockey.
In a lot of ways, this was Avery and Jared’s normal. Mom recently reminded me that it wasn’t until my sister began school that she realized that not everyone needed ankle-foot orthoses or had sisters who were disabled. Every morning Avery sat on the bottom stair trying to put my AFOs on the way I did, while telling Mom that she couldn’t go to school without leg braces. Before then she hadn’t known any different. Avery even learned to walk pushing my walker around the front lawn.
Obviously, Jared, who came along two and a half years after Avery, had a wider frame of reference, but he was still rather desensitized to my differences. Once he learned to walk, his favourite game was running away with my canes. He learned very quickly that I couldn’t get around, let alone get them back from him, without at least one of them. (This is when I learned to get around the house with the aid of the furniture and walls; from which point onward Mom cursed me as she scrubbed my fingerprints from the walls.) Once Jared began to talk, he would yell, “You’re nothing but disabled!” whenever he got mad at me. “Thanks Tips” was often my response.
When I was around eight, and we still lived within walking distance of our grandparents’ house, Dad would often walk us over to visit them. I would drive the grey Power Wheels Jeep my parents gave me as a reward for using my quad canes for two months straight. My sister was strapped into the passenger seat with a pillow for support and always fell fast asleep (how she slept through my jerky stop-go-stop-go driving no one could quite understand). Our green wagon, the one with two seats and a door, was attached to the back carrying my canes and whatever else we needed to bring. Dad, with seemingly endless patience, strolled slowly behind us.
Avery grew into what my mom calls a “Mensa baby” because she not only reached all of the expected milestones in a way that I had not, but she did so quite early. My parents couldn’t help but be shocked and impressed. Not long after she crawled, she walked, climbed and ran. One of her favourite activities for a time was dismantling her crib, escaping from her room and climbing into bed with me (although I now find this funny and cute, at the time I had mixed feelings). To try to remedy managing a wheelchair and a double stroller, Mom briefly entertained the idea of putting Avery on a harnessed leash of sorts. This was short lived however, as Avery quickly began behaving like a dog in public, and I encouraged her by laughing shamelessly and patting her on the head. From then on, the kids would take turns riding on my lap.
The juggle and struggle of three kids, one with special needs, never stopped Mom from taking us on trips and activities. Together we have flown countless times between Toronto and Edmonton and Palm Springs to visit family, and been horseback riding in Banff and white water rafting in Jasper. Mom told me that rarely if ever did she worry about how to manage us until we were on our way and she had no choice but to figure it out.
A great example was rafting: When our 20-something instructor, highly attractive, shirtless and with a nipple piercing, saw me struggling to walk over the rocks to the boat, he picked me up out of nowhere and carried me to the boat to sit with him. I was 15 and mortified that my mother might tease me, as she looked like she could barely contain her laughter. Although it wasn’t always easy, I really appreciate my mother’s determination to do these sorts of things with us. Not only has it given us all wonderful family memories, but it has also taught me not to be held back by a potential struggle because it could be worth it for the life experience.
As the oldest I’ve spent a lot of time babysitting and caring for my siblings while my parents worked. This included playing house with my sister while she used my canes to pretend she was disabled too; watching movies while pretending our living room was a movie theatre; trips to the park, me with my walker and them on Jared’s Power Wheels dirt bike; and making grilled cheese, Kraft Dinner, chicken nuggets or tea and toast—the only foods they’d eat for years.
When my brother and sister began school, I assisted with kindergarten and primary school homework. When they bathed I would answer the call to rinse soap from their eyes and check their hair was free of shampoo. To accomplish a lot of these things I taught them how to “help me help them” by carrying things, opening doors or climbing up on the counter to reach dishes I was too short to reach (thanks to my short stature of 4 foot 9). I may not have always appreciated this time with my siblings, but in hindsight, I love this time with them! They were so funny and cute, and it made me feel good to play a helpful role in my family. I’ve also realized, as I’ve gotten older, that it’s helped me to prepare for the possibility of having my own children.
However, this isn’t to suggest that there was never any jealousy. We battled from time to time for the upper hand, as many siblings do. But, likely due to the age gap between the kids and I, most of the jealousy came from me rather than them. I’ve always admired the apparent ease with which they did things, and I never wanted to see them waste their potential—especially when it came to their education. The struggle to accept my physical disability is definitely real—and at times, ongoing—but I’ve always been particularly annoyed with the limitations of my learning disability. Although I’ve often enjoyed school and achieved good grades, I’ve always had to work hard to achieve them. (I think one of the reasons school has always been so important to me is that, unlike my CP, I have a bit more control over it and can more easily combat it with time and effort).
Avery, on the other hand, is quite naturally academically inclined. I’ve always felt that if one can do well easily, one should. So I’ve always encouraged the kids about the importance of school. In reaction to Avery’s apparent ease, both my parents and I have always praised her while unintentionally developing an expectation of her success. And although it is difficult for me to know the full extent, we have learned in recent years that this expectation resulted in Avery putting a lot of pressure on herself. She feared disappointing us if she did not keep it up. We now make an effort to praise her accomplishments without any implied pressure. Jared has always been far less bothered by such things, and is quite easy going in general.
When Avery, Jared and I would argue while growing up, Mom would often remind us to be kind as we may need each other one day. This always bothered me because I took it personally to mean that I may not be able to remain independent as I aged. More recently, I realized that Mom only wants us to be able to depend on each other as family. It has also been an interesting realization for me, now that the kids are older, that I can depend on them to help me.
For instance, when we were at the West Edmonton Mall’s indoor waterpark a couple of years, Avery and Jared worked together to assist me: in inner tubes, we all linked together, with me in the middle, to keep me from floating too far from them in the waves. Later, Avery held me up as we walked out of the pool towards my canes. Mom was so happy with this that, we later discovered, she took a photo and sent it to Dad. More recently, when I injured my back in a fall, Avery came to Toronto to look out for me. Jared, while he is less likely to volunteer, will help me if I ask him to carry or reach something. I see the effect of growing up with me more so in the way Jared responds to and is tolerant of others who are different. While the other boys made fun of another boy in his class with CP, Jared did not, and was mindful to help him when needed (even though, Jared told me, he did find the boy a bit annoying, but not because of his disability).
During my research in preparation for this piece, I asked Avery if she had ever been jealous of me or worried about caring for me when we were older. She told me she’d never been jealous, except when I went to Easter Seals’ Merrywood Camp: “That made me a bit jealous,” she said, “because it looked like fun.” As for caring for me, she’d never given it much thought because I was older and she’d always seen me take care of myself. “I’ve just thought that maybe we should live in the same city,” she said, which we soon will.
Avery recently rented an apartment in Toronto with a friend in my building and will be studying at the Ontario College of Art and Design in the fall. Not that I think Avery moved here for me. It just so happens that we both love Toronto. But it will be nice to have her close by. As much as I hate to admit such things, maybe Mom was right: we may need each other one day.
By Louise Kinross
In February, Maria Tassou did something she’d never done before.
She flew to Miami Beach with a friend to hang out at the ocean.
Maria, who is a Toronto real-estate lease administrator, had never travelled without her family.
That’s because Maria has Arthrogryposis, a condition that causes stiff joints and weak muscles. She can’t propel herself over distances in a manual wheelchair or carry luggage. The places she’d travelled to in Europe with her family hadn’t been accessible enough to bring her power chair, so she relied on her parents to help her navigate in her manual chair.
This year, Maria planned a trip to Miami with her friend Michelle, who also uses a power wheelchair, knowing she could count on better accessibility. Michelle also had lots experience travelling on her own in the United States.
BLOOM asked Maria how she planned for the trip and what she’d recommend to parents travelling with children with disabilities.
BLOOM: What were some of the barriers you’d faced travelling?
Maria Tassou: I can’t push anywhere long distance in my manual chair and lifting bags was challenging. I had a suitcase with two wheels but it was difficult for me to manage it with my power chair. So I wouldn’t have been able to leave my condo alone and get to the airport with my suitcase. Now you can get luggage with wheels galore, and that’s really helped. I bought a suitcase with four wheels that spin and it’s easy for me to manage it from my power chair.
BLOOM: Did you have any problems with flying?
Maria Tassou: Because my knees don’t bend nearly as much as someone else’s, I have to have extra leg room and the ability to sit forward in the plane so that I can change my posture during the flight. Even though I’d fill out forms asking for bulkhead or window seating, I often didn’t get it. In one case, when I was on a charter flight with my family, the seating was so cramped that I couldn’t move for nine hours. By the end of the flight I could hardly handle the physical pain I was in. My Dad tried to help me but he couldn’t get me out of my seat. Two grounds people had to come and someone took my legs and someone took my arms and they lifted me up and over the seat. That made me nervous about flying on my own.
BLOOM: How did you solve the seating issue on this trip?
Maria Tassou: My friend had experience flying on a number of airlines and had had the best experience with Air Canada. She said ‘It's worth paying a little more if need be to fly with them because they know how to treat you and your chair right.’ Since I was travelling with someone who wasn’t able-bodied, I wanted to make sure everything went as smoothly as possible. I contacted Air Canada about getting elite seats, where there’s a little bit more room. Typically people pay a small fee for these seats, but I’d read that sometimes they’ll provide them to people with disabilities. Air Canada gave us those seats and we didn’t have to pay for them. They were great and made a big difference for me.
BLOOM: Did you have any issues with checking your power chair?
Maria Tassou: One thing we liked about Air Canada was their policy that you can keep your power chair while you’re in the airport right up until you get to the door of the plane. On some airlines they take your chair an hour or two before the flight and give you an old-style manual chair to sit in which is hard to push. With Air Canada, the grounds people who are going to put the wheelchair in cargo meet you at the door to the plane and ask what the vulnerable areas of the chair are. People with disabilities are boarded first and they bring the flight chair to you so you can transfer in privacy.
BLOOM: How did you make sure that the Miami area you were staying in was going to meet your needs?
Maria Tassou: You can find out a lot online, and then you have to phone to be sure. I did a Google search for ‘wheelchair accessible Miami.’ For example, there’s a website called Oyster.com where they often put ‘best accessible places to stay’ for a given city. also I found out that every bus in Miami is accessible and there were a fair number of wheelchair cabs.
BLOOM: What about your hotel?
Maria Tassou: Most hotel websites have filters so you can ask for a ‘wheelchair accessible’ room. But you have to phone to clarify exactly what they mean by ‘wheelchair accessible’ and what you want. We wanted a roll-in shower, not a bathtub, and luckily the hotel was very clear on its website, and with their images, that they had a roll-in shower.
BLOOM: Were there any other issues with your hotel room?
Maria Tassou: I had called to confirm we were getting a fully accessible room that included the balcony. We felt if we’re going to do this, we’re going to do it right, and we wanted to sit on the balcony and enjoy the ocean. When we got there, we realized there was a step onto the balcony. I told them ‘We paid a lot of money to come here on the understanding that the balcony was accessible and, to their credit, they dug high and low and found some very sturdy ramps for us.
BLOOM: What was it like navigating the beach outside your hotel?
Maria Tassou: There was a great pathway behind our hotel that went for a long, long stretch before you had to get back to the sidewalk of the street. I had googled ‘Miami Beach accessibility’ and found a Miami Beach government site showed where you could find mesh mats. These are mesh pathways with runners on the beach so that you can travel on the sand with your chair and not get stuck. On the same website, when I scrolled down, I was surprised to find that they also had motorized beach wheelchairs that they loan for free to people with disabilities.
BLOOM: What kind of chair is that?
Maria Tassou: It’s a basic power chair with really big flat wheels that can travel on sand—like a little dune buggy. It’s amazing because the mesh mat only goes so far on the beach. The ocean rescue staff told us: ‘We only loan them to people with disabilities so that they can experience the same things everyone else does walking along the water line.’ The beach chairs were a fun adventure that we don’t get to experience here in Toronto.
BLOOM: What was it like to be away with a friend rather than your family?
Maria Tassou: It was freedom. I’m an independent person and when I’m at home I do everything myself, so it’s weird to have to rely on people when I travel with my manual chair. Being somewhere else and really enjoying it with my friend gave me confidence that I can travel with anyone.
BLOOM: What advice would you give parents who want to travel with their kids with disabilities?
Maria Tassou: The key thing is to plan. I found reading online, phoning and asking as many questions as you can ahead of time helped make our trip smooth. If you're told something is ‘accessible,’ ask what that really means. Don't take it for granted that their definition is what you need.
BLOOM: Any other recommendations?
Maria Tassou: When it comes to access and accommodations 'you get what you pay for.' By no means would I say overspend, but where a price differences isn't significant and is something within budget, experience has shown me that in terms of accessibility, treatment and so on, you'll be glad you spent that little bit extra.
By Louise Kinross
Yesterday on the Danforth I saw a toddler with mini ponytails sprouting out of her head. She looked like she'd just learned to walk. She stopped in front of one of the StopGap ramps that dot the Toronto street, allowing those in wheelchairs or strollers to get up over the single-step storefronts (See our story on Luke Anderson, the man behind the StopGamp ramps).
She toddled up the apple-red ramp, got to the top, produced an enormous smile, then toddled down. Then she did it again. And again. And again. Her mother was several feet up the street, unlocking a bicycle. Every time the girl got to the top of the ramp, her tiny figure disappeared out of her mother's sight line. Just for a moment. Then reappeared.
For the next 10 minutes, this little miss continued to take small steps up the ramp, turn around, smile at her physical mastery, then come back down. People on the street began to stop to watch her.
While she probably wouldn't have tried the single step up to the door independently, the red ramp with the most gradual of inclines gave her confidence. It was the perfect example of universal design.
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