I had the pleasure of attending the Brain-Child-Partners conference here in Toronto on Nov. 6-7 2017. I was there with CanChild, but was also representing the youth voice.
The first session, Can We Fix the Brain? shared some fascinating and exciting therapies that help to rewire the brain and improve mobility. But it was the question posed in the title that really engaged the crowd, a question which quickly morphed into Should we fix kids with disabilities, and to what extend? Given this is likely a common question among parents of newly diagnosed children, many parents in attendance stepped up to the microphones to over their thoughts and experiences. Listening to the many opinions on this question, a theme became clear to me: We don’t need to be fixed; we need understanding and tools to help us achieve our potential and participate in society without stigma.
BCP2017, my first such conference, was an excellent example of research and community uniting around a common interest and goal — patient engagement. But how to we achieve effective patient engagement that satisfies all parties? This was a question that received a lot of attention but lacked a clear answer.
Several parents, both official presenters––including Rachel Martens, Julie Drury and Ann Douglas––and those in the audience, shared their experiences advocating for their children; what they’ve done, learned and need to change. I appreciate these stories more and more as I get older because they help me to better understand the challenges that my own parents faced and concurred in order to give me the best life possible. And it is by listening to these experiences that help researchers and clinicians understand what and how they can improve the lives of patients moving forward. I particularly loved what Louise Kinross, editor of BLOOM, had to say about clear and effective communication––if you want to know if parents understand your message, just ask.
Louise also used one of my favourite quotes, from Albert Einstein, to illustrate her point: “If you can’t explain something simply, you don’t understand it well.” Those deep in the science often seem to lose sight of the fact that not all of us can, or care to, speak science. Though we greatly appreciate their work, it should be communicated in the language of those it is intended to help, otherwise it is almost entirely useless.
As important as the parent voice is, so is the voice of the patient. Symon Hay captured the issue well when he said, “I think quality of life should be the root as individuals, health care practitioners, care givers and researchers.” He also spoke about how lucky he was to have had a doctor who put more stock into who Symon was as a person, than just his diagnoses alone. This enabled him to live a full and active life (We have a shared love of travel), when it seemed, on paper at least, that he shouldn’t. I couldn’t agree with Symon more.
I was thrilled to be included with and meet the small group fellow youth with disabilities from across Canada at BCP2017. However, there should have been more of us. We should have been as considered and granted had as great a platform as parents.
Many of us with disabilities wouldn’t be where we are today without our parents, research, medical advancements and early intervention. For this I am forever thankful to all those involved in my care and success. But it’s important to remember that we, the patients, lived it and are here to share our insights. This is especially important when discussing the transitions from childhood to adulthood, or youth engagement. If you want to know what we think or need, either for ourselves or future generations of children and youth with disabilities––as you should––ask us.
I got my first paid writing gig with this very publication in March 2015. I had finished classes and was visiting my grandparents in California. When I got the email, I couldn’t wait to call home to tell dad that someone was going to pay me to write. I knew that he worried about me finding work.
That’s not to say that I wasn’t worried, but it’s different knowing your parents are concerned about your future. With a college diploma and university degree—both in journalism—I didn’t want to disappoint my parents after spending so much time and money in school.
I graduated from Ryerson University with a Bachelor of Journalism on June 7, 2015 and I’ve been looking for work ever since.
That’s not to say that I haven’t been writing. I’ve been writing and published pretty regularly over the past year on the topic of disability. I’m using my talent and love for writing to spread awareness on what I know best. It’s the dream. But I’m not sure I have the makings to be the kind of freelance writer who can juggle enough work to pay the bills.
So I’ve been on the hunt for a day job—full- or part-time. It’s a tough job market for anyone right now, especially recent grads. Gone are the days when a college diploma or university degree guaranteed our parents a job for life.
That’s difficult when people are this educated. It’s even more challenging when I have to consider my physical and learning disabilities. Unlike a lot of people my age, I can’t really work retail or as a waitress or any other job that requires me to stand for long periods and carry heavy objects.
I can’t hide my cerebral palsy. I can only hope that employers aren’t blinded by assumptions about what I can and can’t do, and give me a chance based on my qualifications. So far, no one has come right out and said anything about my physical disability. But I can sometimes tell they’re surprised or uncomfortable when they first meet me.
My learning disability has been more of an issue at job interviews.
In school, a learning disability is challenging but manageable. We have rights to accommodation—for me this often meant copies of notes and extra time on tests. There are policies and people in place to help level the playing field. You just have to know who and what to ask for. However, at no point during my post-secondary education did anyone explain how to advocate for what you need in the workforce.
Thanks to the Accessibility for Ontarians with Disabilities Act, many employers state that they are equal opportunity employers who don’t discriminate against those with disabilities. Some, including the City of Toronto, have explicit policies and procedures for those who need accommodation during the hiring process. I appreciate and wish that all employers had clear policies for accommodation during job assessments.
Recently I’ve sat a few.
In two cases I was told I was just having an interview, but when I arrived, the employer asked me to take a test. The first time, because I hadn’t been given a heads-up, I felt unsure, uncomfortable and annoyed.
Usually, I need a bit of extra time, a computer, spell check and a calculator. Without them, I knew the test wouldn’t be a fair evaluation of my abilities. But I wasn’t sure I should tell the employer about my learning disability. Should I or shouldn’t I? I didn’t want to be taken out of the running. So I didn’t.
The second time I was invited by email to a job interview for an administrative assistant, but when I got there it was an exam. In fact, there was no interview!
I was a bit thrown, but I figured I’d make the best of it. Then I eyed the math section on the test and my “can-do” attitude evaporated.
I’m terrible at math, thanks to my learning disability. My learning disability affects my comprehension, spelling, grammar and math skills. I’ve been able to find ways to manage the first three issues, but I’ve never found a way to wrap my mind around math.
In high school, I only took locally-developed and workplace level math. As a result, there was math on that job test that I’d never seen before. When I got home and told my roommate about the letters and brackets, she told me that was called algebra!
I did ask if I could use a calculator. When they said no, I asked if I’d be able to use a calculator on the job. Oddly, they said that would be fine. Throwing caution to the wind, I came clean and told them about my learning disability. They looked uncomfortable and told me to do my best. Not surprisingly, I didn’t get called back for an interview.
So while my search for a day-job continues, I’ve realized that I have nothing to lose, or be ashamed of, in being upfront about my learning disability. In future, if invited to an interview, I’ll ask if it includes an assessment. If it does, I’ll let people know about my disability before we meet.
From here on out I’ll look for, inquire about and follow any procedures necessary for accommodation during the hiring process.
If an employer has a problem with my disabilities and doesn’t wasn’t to accommodate me, I probably don’t want to work for them anyway.
“Ooh / There is a camp I know/ and it lies on the Rideau / and they call it Merrywood / and you know, they really should.”
These are the opening lines to the Merrywood Song, the anthem of my favourite place on earth: Merrywood Easter Seals Camp in Perth, Ontario, for children and youth with disabilities. However, Merrywood was always much more than just a summer camp to me. From the first five days I spend there in the summer of 1997—my first time alone after two summers of family camp at the former Northwood with my parents—this was a place of accessibly, inclusion, friendship and fun. And as cheesy as it may sound, the friends and memories made there really do last a lifetime.
I’m still in touch with Erin, the counsellor who met me at my car on my first day at Merrywood. Not only did she look out for me that session and every session we’ve spent there since, but we’ve stayed in touch over the years through letters and Christmas cards. Nowadays, Facebook helps keep us up to date on the happenings in each other’s lives.
I think it was the summer of 2002 when I didn’t get into Merrywood but instead was offered a place at Camp Lakewood. I was in utter despair over not getting into Merrywood—my 12-year-old life was over as I knew it. But I was happy to be going to camp somewhere. And, as it turned out, this was one of the best things to ever go wrong in my life.
At Lakewood, I met my best friends in the world. Not long after arriving, I met Hanako. She was in the bed next to mine and our first interaction involved her helping me to disentangle my walker from my wheelchair. I’m pretty sure she thought I was quite daft for getting into such a predicament, but it was nice of her to help.
The previous year, Merrywood had acquired a collection of untippable and unsinkable sailboats that could be maneuvered easily from a comfortable seat with a joy stick and single rope operating the sail. Sailing quickly became my favourite activity, pushing swimming to second place. I love the freedom and exhilarating speed when I catch the wind just right.
Lakewood also had these sailboats, and pretty good wind conditions as well. When Hanako and I arrived at the beach for sailing on the second day of camp, it was quickly established that, due to short staffing, we would be sent in a boat together as we were both experienced sailors. Darren, an attractive Irish sailing instructor, whom I immediately had a huge crush on to the point of being speechless, had trained Hanako the summer before.
So off we went. The thing about spending two hours in a boat, with little else to do but sail and talk, is that you either come back friends or foes. Luckily for us, we discovered that we had a fair bit in common: in addition to a love for sailing, we had similar tastes in music and books, came from Dutch families and were the oldest of three children. We also had a similar form of cerebral palsy so shared a life view in this respect. We returned with the beginnings of a beautiful friendship. From that point on, Hanako and I did everything together, sailing as often as we could. We were even so bold as to ask Darren to rig an additional boat for us when there weren’t enough spaces.
“Hang” was a two-hour period of down-time we spent in or around the cabins every afternoon. Hanako and I would sit side-by-side on my bed or in our wheelchairs, as we quickly discovered that there was just enough space between our two beds to fit both chairs beside each other. We listened to my countless burnt CDs while singing along shamelessly.
Lakewood was not a bad place. The people and the sailing were great. The cabins had yet to be updated but the six, small, wooden buildings fostered a sense of community and tradition. The only downside was that dead fish from Lake Erie often washed up on the beach, giving the entire camp an unfortunate smell.
Despite my love for Merrywood, I followed Hanako back to Lakewood the next summer. She’d never been to another Easter Seals Camp and, like me, dislikes change. Hating to waste a day, she convinced her father to drop her off at 9 a.m. on arrival day and, after some badgering from me, my family dropped me off soon after.
If I remember correctly, after the required rounds of handing in the money our parents had given us to purchase a new Easter Seals T-shirt, checking in with nurses and assuring the waterfront staff that we were still crazy about sailing, we spent the majority of the morning messing around in arts and crafts while meeting new staff and catching up with those returning.
It was later that afternoon while lounging on my bed with Hanako that we met Katie, who would quickly become our third Musketeer and another of my best friends. When she came in I could tell right away that Katie was another highly independent camper like Hanako and I. Her cerebral palsy wasn’t even noticeable to me at first.
It was quite out of character for me then, and still is now, to make the first move to initiate a friendship, but Katie seemed cool and I felt for her as she nervously sat down next to another cabin mate who was much more severely disabled. She looked uncomfortable so I took a chance and said hi, striking up a conversation.
I later found out that this was Katie’s first time at camp, although her twin brother Kasey had come the year before. She was new to camp life and to being around kids with such a wide spectrum of disabilities. She adjusted quickly though, asking Hanako and I questions whenever coming across something she wasn’t familiar with.
After Katie and I hit it off, Hanako asked if I was ditching her for Katie. I assured her that I was doing no such thing; I simply thought she could use a friend and the three of us could hang out together, which we did.
We did everything together, except sailing which Katie found boring unless it involved a water war against her brother. Three can be an awkward number (and I won’t say there weren’t disputes over the years) but we usually sorted it out. Not big on sports in general, we often found ourselves together at the pool diving for rings (although Katie floats a little too well for such activities) having sparkle and paint fights in arts and crafts or doing something (often involving food) in Life Skills.
Hanako, Katie and I were an odd trio but were drawn together by our shared independence and friendship. I saw myself as the glue of our group. In addition to the things I have in common with Hanako, Katie appeals to a lighter and more girlie side of my personality. At 14, and even now to a point, Hanako never cared much about clothes, make-up or hair. On the flipside, Katie, to our slight disappointment, has never had much interest in picking up a Harry Potter book or watching A Walk to Remember on repeat.
Lakewood was closed after that summer and after some fantastic times there I was sad to see it go.
Once home, Katie and I began speaking on the phone almost daily (a habit that would continue until we went to college and upgraded to Skype) and Hanako invited me to stay with her for a couple of weeks in Kitchener-Waterloo. From then on I would visit Hanako after camp each summer and almost every school holiday during the year. Our parents used to take turns driving me back and forth between Bowmanville and Kitchener-Waterloo and when I look back, those two-hour drives were some of my favourite times, often spent singing aloud to our favourite bands (like Switchfoot, Relient K and Coldplay). Although I appreciate the independence it provides, the train ride alone is just not the same.
Off to Merrywood we went the next summer where I proudly introduced them to my favourite place and everyone I knew. Hanako and Katie were happy to admit that this was a nicer place with new, air-conditioned cabin buildings and water on three sides (free from the stench of dead fish). We also enjoyed some additional activities: Hanako went white water rafting on the Ottawa River, while the three of us enjoyed beach day and camping in a tent overnight together (Katie, who wasn’t keen on boats at the time, braved the canoes like a champ to partake in these two activities with us).
This continued for the rest of our years at camp, the three of us usually only separating when Hanako and I went sailing. Hanako and I took the summer of 2009 off because we knew we might want to work at Merrywood and were required to take at least one year away to create a bit of separation between camper and staff.
I worked at Merrywood as a cabin counsellor in the summer 2010. It was my first real job and a lot harder than I expected. I was always tired, but it was still the best job in the world. Hanako came for a session to work as a peer support counsellor. Essentially she was an ex-camper hired to act as a role model for campers who might wonder what life is like with a disability as they get older. It was so much fun to be there together again.
Then life and school got in the way, so I had to take four years off from camp.
I missed it very much and was ecstatic about going back this summer to work for a session as a peer support. It was easier this time as I’m older and know better what to expect. Although I can’t help much with the more physical aspects of the job, such as lifting, I love hanging out with the campers and helping them to enjoy Merrywood as I did, while encouraging them, as I have learned from experience, to be the best they can be.
It’s been suggested to me recently that Easter Seals camp does more harm than good by fostering the idea that those with disabilities should be segregated from their able-bodied peers. I however, disagree. As I’ve written before, I think that mingling between abled and disabled people is important for acceptance and understanding between both parties. But that doesn’t mean that it’s not nice, let alone helpful, for children and youth to spend time with others with shared life experiences—even if it’s only for 10 days a year—in a place so accessible it could be argued that disability doesn’t matter.
Camp was the only place that I can say this was undoubtedly true.
When I was little I pushed my red and blue kitchen booster seat around the floor on my tall knees, pretending it was a wheelchair for my doll. Like many kids, I played house with dolls, often pretending I was the mom and they were my children. I can’t remember if using the booster as a wheelchair was my way of compensating for the lack of disability representation in my toys. But maybe it was. Kids act out what they know. It was perfectly normal for me, a child with cerebral palsy, to pretend I was the mother of child with cerebral palsy. And, for lack of a more accurate option, I had to use my imagination.
There aren’t many toys that depict the story of a person with a disability. However, all minorities have struggled to get representation from the toy industry.
There was Share A Smile Becky, a Barbie I had in my vast 1990s collection with a pink and purple wheelchair with sparkly wheels.
Her unfortunate title aside, I remember thinking it was cool to have a Barbie that reflected at least part of my reality. However, her time on store shelves was short lived and she’s since been discontinued.
Some progress in diversity is being made. Mattel announced last month that they’re introducing 23 Barbies with different eye colours, hair colours, skin tones and face shapes. Until now, most Barbies were blonde. Unfortunately Barbie’s skinny body shape, which has been shown to be anatomically impossible, remains unchanged. Most girls and women, including those with a spectrum of body sizes and abilities, don’t see themselves reflected in these dolls.
Cue the Toy Like Me campaign, which debuted in April. This Facebook and Twitter initiative was started by three British women: journalist Rebecca Atkinson, who’s deaf and visually impaired; Melissa Mostyn, a deaf writer whose daughter has cerebral palsy; and Karen Newell, a former play consultant whose son is blind. They’re asking social media users to join the campaign by sharing images of toys, often handmade or altered, “that reflect disability positively,” as well as letters from children asking the toy industry to create “toys like them” using the hashtag #ToysLikeMe.
“When I was growing up, I never saw a doll like me,” Atkinson said. “I had two hearing aids. In the real world, there were people like me. In the doll world, I didn’t exist. What does that say to deaf and disabled children? That they aren’t worth it? That they’re invisible in the toys they play with? That they’re invisible in society?”
A month later Makie Lab, a 3D printed, made-to-order doll manufacturer out of London, England, answered the call by creating three dolls with visible disabilities or differences: one has vision loss and uses a cane, another comes with hearing aids or a cochlear implant, and the final one has a red facial birthmark. “It’s a pretty even race between the three, but Hetty (with hot pink hearing aids) is leading [sales] right now,” the lab told me in an e-mail.
“It’s fantastic that our supercharged design and manufacturing process means we can respond to a need that’s not met by traditional toy companies,” said Matthew Wiggins, chief technology officer of Makie Lab. “We’re hoping to make some kids—and their parents—really happy with these inclusive accessories.”
Judging by consumer comments on the Makie website, many are happy with the dolls that include disability storylines. I’m also happy. I wish these dolls had existed when I was a kid.
An argument can be made that it’s up to parents—not a toy—to help a child with a disability feel comfortable and confident. But I think these dolls are a helpful tool. And they’ll broaden the awareness of other children and families, too. After all, you can’t adjust to something you’ve never seen or played with.
When I was a child doing physical therapy at Grandview, my younger sister Avery climbed into a nearby hand-bike and begun 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 know 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.
Canadian parenting expert Ann Douglas spoke with BLOOM about her new book Parenting Through the Storm—a collection of strategies for raising children with mental health, behaviour or learning challenges, and maintaining your own health and happiness in the process. It’s Ann’s most personal book to date (see above with her husband and four children). Each of Ann’s children has struggled with something, including bipolar disorder, depression, anorexia, Asperger syndrome and ADHD.
BLOOM: What made you want to write this book, particularly at this point in your career?
Ann Douglas: I remember thinking at the time, when my kids were going through such a difficult time, how it seemed like a lot of mainstream parenting books just didn’t really speak to me. I used to get infuriated by magazine articles that would say something like: ‘Better behaviour from your child in 30 days.’ That kind of article would make me crazy because it felt, to me, like the ‘Thinner in 30 days thing;’ it was unrealistic and didn’t apply to everyone. It reminded me of the kind of advice that sometimes you’d get from a well-meaning friend or relative who’d say ‘Well, tell them how to behave.’ It’s like ‘Well, honestly, you think we haven’t tried that? They’re having a really hard time. I think you’re not understanding the extent [to which] we’re struggling, and the fact that we’ve tried everything we can think of.’
I wanted to write a book that would help parents to feel a little less alone and a lot less judged. So that was sort of my goal. In terms of why I decided to write it now: back when we were struggling, I was going through such a hard time I could hardly write a grocery list. I was not in a position to be able to look at things analytically and to be able to go into the problem-solving mode, because I was feeling stressed and overwhelmed by the situation. I think I needed to have a bit of time so that I could see that my kids could come through the other side, they could make it through the storm, and that we could thrive as a family. Only then did I feel like I could sort of start to think through what was effective, what worked for us, and then do the research to find out what worked for other families, and what strategies research was identifying as helpful.
BLOOM: One of the key themes is that in order to support your child who is struggling, parents need to take care of themselves. Is this a new idea?
Ann Douglas: No, I don’t think it is. But I think that it’s a message that parents can’t hear often enough. Because you’ll say, ‘yeah, yeah, yeah, I know I really should be getting sleep or exercising or whatever, and I will once my child is doing this better, or my child gets past this milestone.’ Then you keep postponing that time of self-care and you can’t do that indefinitely or you become totally depleted and burned out. I say this from personal experience. One of the reasons I’m so passionate about this stuff now is because I really did sort of hit the wall: I wasn’t sleeping well. I wasn’t eating well. I gained about 100 pounds and I had to really work hard to lose that weight.
BLOOM: For parents who feel overwhelmed with the demands of their child, how can they start to care for their own mental and physical health?
Ann Douglas: Sometimes it’s just little wee tiny things, like if somebody offers to help in some way letting that person help as opposed to going ‘no, no, no, we’re okay. Don’t worry about it.’ People want to help, so accept those offers because they can only help to make your life easier. As long as it’s not a high-maintenance person that’s going to come in and start making your life miserable. We’re talking about lovely friends and family who do everything from fold laundry, run errands for you, or stay at your house with your child while you go for a walk around the block if that’s all you feel you can manage at first. Because it really is very, very stressful and, I think, it’s the emotional toll: the fact that your brain is still working away at solving the problems and worrying about your child 24/7. [For example], if you wake up in the middle of the night it can be hard to get back to sleep because you’re feeling so worried and overwhelmed.
Looking for little ways to inject some self-nurturing or some fun into your day [is also important]. Even if it’s just, when you get a momentary lull, to flip through the pages of your favourite magazine, or having a cup of your favourite tea, and connecting with people who support you. Whether it’s firing off a quick text message to your best friend saying this wonderful thing happened today, or this incredibly frustrating thing happened today. Just having an outside connection that can say, ‘you know what, you’re doing a great job and you just keep doing that.’
BLOOM: Why is it so hard for parents to take care of themselves?
Ann Douglas: I think a large piece of it is that you know your child so well, and you’re into such a groove or routine with your child, that you worry: if I have a child who has autism, for example, [who] doesn’t respond well to changes in routines, if I go down the street to have coffee or lunch with my friend and somebody else is here they’re going to do things a different way and my child is going to find that challenging. And yes, this is true, but if you look at the cost-benefit analysis, maybe having a parent who feels refreshed and can take on the day is worth a little bit of upset. Plus you want to encourage your child, over time, to work on flexibility, so that can be one way to do it.
I think to realize that it is hard; it’s not as easy as just walking out the door. There’s so much more planning and worrying and thinking involved. But I know [that] so many parents, once they take that step, they say, ‘Why didn’t I do this years ago?’ Because they really feel that it has made that much of a difference in their ability to cope and not to feel flattened and depleted all the time.
BLOOM: What do you think happens if parents don’t make themselves or self-care a priority?
Ann Douglas: They get really burnt out and really depleted and their physical health can suffer. Their mental health can suffer. They can’t be the kind of strong advocate for their child that they want to be. They could be really grumpy and unable to focus on big-picture parenting goals, but get caught up in the emotion of the moment because they [don’t] have any self-control resources left.
BLOOM: In the writing of this book you interviewed other parents and experts at length. How did you decide what to include?
Ann Douglas: Well first of all, whenever I write a book I tend to get a lot of input from parents. So I put out a call through all my usual channels asking if people would be willing to be interviewed over a period of months about their family’s experiences. I had about 50 families step forward. I interviewed them via a series of eight questionnaires that were sent out over about two to three months. It was probably about eight hours’ worth of work per family answering my questionnaires. I’m hugely grateful for the time and effort they put into that because what I walked them through [was] all the different stages: What was it like for you when you didn’t know what your child was dealing with? What was it like going through diagnosis and treatment? What are your hopes and dreams for your child? What is your child’s life like now? So that I could write a book that would cover those different chapters in the family’s journey.
In terms of the researchers and the experts, I did a huge amount of research. I read about a thousand different journal articles, about 40 books, and an awful lot of online research to find top Canadian researchers who would have something helpful to say to families. Luckily, almost everyone I asked for an interview managed to fit it in, including very, very busy people who were flying across the country to speak at conferences. I’d get them booked eight weeks in advance for 15 minutes on a Friday morning. But I managed to get a lot of really good information and to get them to sort of boil down in practical ways what this could mean to make life better for parents who have a child who’s struggling.
BLOOM: Were you surprised about how many families were willing to share their stories?
Ann Douglas: I was surprised at the depth and how much they trusted me. They told me very intimate and personal and painful times in their lives and they trusted me to portray their stories in a way that honoured themselves and their children and their struggles as opposed to judged. They made themselves vulnerable and that takes a lot of courage.
BLOOM: What do you hope parents take away from the book?
Ann Douglas: I hope that parents emerge with the feeling that they’re not alone and that they’re doing the best they can in a really difficult situation. I think it’s so important to remind parents to treat themselves with the same kindness they would extend to a friend who’s struggling. So in other words, we’re talking about self-compassion. Because self-compassion is life changing and if I can just spark that idea in people’s minds, of being a little kinder to themselves, they’ll find it so much easier to deal with the day-to-day challenges of what they’re facing in their families.
BLOOM: And professionals, what do you hope that they take away?
Ann Douglas: I hope professionals who read the book get a sense of how hard it is for parents and the fact that parents really are doing the best that they can. That way, professionals may be less inclined to judge or assume they know better and recognize that the parent is the true expert when it comes to their child and their family situation. If parents and professionals can work collaboratively, sharing the same goal of helping the child, amazing change can happen.
BLOOM: There are many families mentioned in the book, including your own, who have several children with mental health, behavioural and neurodevelopmental challenges. Is this common?
Ann Douglas: It is. Often a lot of things have some kind of genetic basis and we know that there’s usually a mix between genetics and the environment. So it’s not exclusively genetic, but you know there’s going to be a whole bunch of genes popping up in different family members, so it’s not unusual at all for there to be people that share the same diagnosis or have related diagnoses. Maybe one person has problems with anxiety, and somebody else with depression, and somebody else with ADHD, and so on.
BLOOM: Which can make it even more challenging?
Ann Douglas: It can, especially if the parents also share the diagnosis. Maybe [you] have ADHD and are trying to parent kids with ADHD and at first it can feel like ‘oh wow, this isn’t going to work very well’ but then realize that you’ve gained a lot of wisdom and insight living your life and figuring out how to manage your particular challenge so you can share some of those insights with your child. You can also be more understanding because you know that these challenges are for real, they’re not something made up and it’s not just a child trying to be difficult or act up for the sake of acting up. There’s a reason for the behaviour.
BLOOM: Was there anything that you learned while working on the book that was particularly new, interesting or surprising given your experience?
Ann Douglas: The information about self-regulation was something I hadn’t done a lot of reading about until I started doing the research for the book. The idea that we can both boost our positive emotion and reduce our negative emotion just by making choices in our daily life; that was mind blowing for me. Just learning how taking a couple of walks a day can help me to manage my anxiety. Also, the piece about self-compassion: that it’s so important to change from the self-critical channel in your head where you hear mean things being said to yourself about yourself, to a much more self-compassionate kind of stance where you remind yourself that you’re doing the best you can in a difficult situation. Then trying to think what you can do to make life better.
BLOOM: How did you decide what language to use to describe conditions?
Ann Douglas: I want to be as inclusive as possible so that everybody can sort of see himself or herself in the book. I also believe when we say someone has a mental health disorder it sounds, to me, so negative and so judgmental. I picked up on the language about calling things ‘a challenge’ from attending a mental health conference last year that was hosted by the Institute of Families for Child and Youth Mental Health. They asked the young people themselves ‘What language do you prefer when people are talking about your mental health problems/difficulties/challenge?’ And they said they would very much prefer the idea of using the word ‘challenge’ because that left the door open to possibility and hope, because if it’s a challenge you can just keep working at it. Whereas if it’s a disorder, it sounds a lot more definitive and that there’s not quite as much room to grow.
BLOOM: You repeat full names and diagnosis quite often. Is the book meant to be read from start to finish? Or can you kind of skip around?
Ann Douglas: You can dive in to whatever you need most today. If your child is having a hard time at school you might dive into the advocacy section and if you’re preparing for that first meeting to get a diagnosis, you might start there in the book. If you just want to know what it’s like for other families, you might read the stuff on how it is for other people and their families. That’s why it has a really good table of contents and comprehensive index—so that whatever your issue is today when you kind of feel like you’re hitting the wall, then flip open the book and look for the appropriate section. You might be inspired to read other sections around it, but at least if you have a burning question or issue today, then you know where to go.
BLOOM: What kind of feedback have you had? What are you hearing from parents and professional groups?
Ann Douglas: They’re really grateful that there is a book like this now so that they don’t feel quite so alone. They are just in awe of the braveness of the families who decided to share their stories in an effort to try and help other parents. I share that feeling of appreciation because if other families hadn’t been willing to share their stories there wouldn’t have been a book.
BLOOM: Was it challenging to write candidly about your own experiences?
Ann Douglas: I had to think hard about what I was prepared to share and what I wasn’t prepared to share, and I also needed to check things out with the kids because it’s not just my life, it’s their life too. So I made a lot of really conscious and deliberate choices about what I was going to write about. A couple of years ago, I sent out a tweet on Bell Let’s Talk day saying that I lived with bipolar disorder and I thought it’s really important for people to know people out there who are dealing with a particular challenge or disability or whatever. Because if we don’t have some sort of role models out there then nobody will ever understand that it’s possible to have a diagnosis and an amazing life. I think that I feel a real responsibility as somebody who, yes has bipolar disorder, but also, yes, has a pretty great life; that I should say I’m not going to be afraid to tell people I live with this.
BLOOM: Was it difficult to choose what you were going to include?
Ann Douglas: I think I just wanted to be as honest as I could and talk about different experiences that my kids had had and that we’d had because, again, not wanting other parents to feel like they were doing it wrong if their child was having a hard time at school or if they were having a hard time navigating the children’s services or mental health care systems. The systems are complicated and schools don’t always have the resources they need to be able to respond to the needs of children. I think that if we all talk about these challenges then that’s the first step to getting these various systems funded enough that every child gets their needs met sooner rather than later.
When I told my mother that I was writing for BLOOM, she said it was ironic given her memory that we were kicked out of Bloorview rehab after my rhizotomy surgery in 1994 for being “difficult.” I was a strong-willed child and she was opinionated and independent. But she was also quick to remind me that those so-called difficulties led to immediate and visible improvements after she made suggestions during a parent support group while we were there. “It was confusing and disorienting being in a new place,” she told me. “Some parents didn’t speak English. I figured that if I struggled then they must have even worse.” So those who appreciate being greeted by a smiling staff member to explain the ins and outs as they enter rehab at Holland Bloorview with their child have Susan Geboers, and other parents, no doubt, to thank.
My mother was the one who taught me I could do, maybe not everything (because no one can go everything), but a lot that others could. I don’t remember there ever being a question of whether or not I would go to college or university—in fact, I graduated from Durham College in 2011 and will graduate from Ryerson University on June 8—live away from home or have a career, date and one day get married. It was just assumed. I only recently learned that my parents were quietly worried this entire time, as pointed out by my father’s psychic (because my parents believe in that kind of thing). But I’ve been assured that it’s normal for parents to worry about their children’s future, regardless of their physical or mental ability.
I was born on January 23, 1990. Nine weeks early, I was about one pound and small enough to fit in the palm of my 19-year-old mother’s hand. It was two months and four more pounds before I was allowed to leave Sick Kids Hospital. Aside from my small size and wonky eyes, caused by an over exposure to oxygen at birth, I seemed like any other baby. It wasn’t until I was meant to start rolling over and sitting up on my own that my mom began to realize that I wasn’t reaching the normal development milestones. After multiple doctors and tests, at two years old I was diagnosed with cerebral palsy spastic diplegia. My mom says that when the doctor called to give her the news, she was so relieved just to have an answer that she said “Okay, thank you,” then hung up. It wasn’t until she began to think about it a few minutes later that she realized she had no idea what cerebral palsy was. So she called the doctor back. Unsure of what exactly my future would hold and not wanting to give my mother false hope, the doctor told her I would likely never walk. This is where, I believe, the problem begins.
In the 23 years since that cryptic prognosis, I’ve not only learned to walk but also relearned to walk after my rhizotomy and again after my leg surgery in 1999 (although my boyfriend’s mother doesn’t consider walking with canes to be walking). It took a lot of hard work by both my mother and I, but I seemed to have fared a lot better in life than the doctors predicted. I don’t blame them, as there are many forms of cerebral palsy and even the same form can differ further from person to person. For example, while my best friend, Hanako, and I both have spastic diplegia, she can walk on her own but I need at least one cane.
It hasn’t always been an easy life, full of the ups and downs of growing up. I’ve struggled with depression and trying to find my place in a world that I often feel I don’t quite fit into. I’ve felt like I’m stuck between the able and disabled worlds with a foot in each—too disabled to go unnoticed but not disabled enough to entirely relate to the disabled community. But despite all of this I’ve always considered my life to be quite unquestionably normal. This is why I find it odd, and a bit sad, when I meet people who are surprised to learn that I live away from home with a roommate, study journalism, spent a semester studying and traveling in New Zealand (during which I went skydiving and bungy jumping), love going to concerts and, not only have a boyfriend, but a boyfriend who is not disabled. This last point is particularly interesting given that I’ve never given much thought to dating someone with a disability. Not because I am a “disabled hater,” as Mom jokingly accuses me, but because most of the guys I come across in daily life are able-bodied. Once people move past their surprise, they often tell me what a great inspiration I am for being so accomplished. But while it is sometimes nice to hear I’m doing well, I hate the implied assumption that people with disabilities don’t do these things and that I am therefore special.
I recently saw a TedTalk by Tamara Taggart, whose son, Becket, has Down syndrome. She speaks about how the doctor apologized and consoled her when giving the news of her son’s condition, just five days after his birth. Tamara said that set the tone for all of the negative conversations with doctors thereafter about all of the things Becket would never do, such as walk, talk, go to school or fit in with his peers (to which the doctor actually said “yes, that is a legitimate fear, as people with Downs are often lonely.”) But she also speaks about another conversation she had with a very hopeful and empathetic oncologist a few years later when she was diagnosed with cancer. This doctor focused on all the positives and told her about how this experience would change her for the better. Tamara wishes that when telling her about Becket’s Down syndrome, the first doctor had offered the same hope and told her about how wonderful her little boy would grow up to be. Parents generally hear first about their child’s disability from a doctor. That’s why doctors should be more mindful of the negativity and stereotypes they are fostering.
It reminded me of how some friends of mine reacted when they were told their son had cerebral palsy—already worrying about how he would never have a job or get married. Don’t get me wrong, I understand fear of the unknown and mourning for the perfect life and child parents thought they would have. But age two is far too young to predict or write-off a child’s future. Having cerebral palsy doesn’t have to mean that the life a parent envisions for their child is impossible—it may just be accomplished in a slightly different way, or better than they could have ever imagined. Maybe he won’t play soccer, but maybe he will play sledge hockey, become a writer or go into the arts or sciences. Finding work is challenging to say the least but a good education, patience and connections are helpful—that’s how I came to be writing for BLOOM. Dating is not always easy (not that it is for anyone). My boyfriend’s parents are old-school European immigrants who dislike me simply because I have a disability. While that is a whole other story, what is important is that this is an extreme case that does not, and will not, happen to everyone.
Being aware of the science of your child’s condition and doing what needs to be done in order to improve their quality of life is important. But it’s also important to help them feel comfortable with themselves and their disability by calling attention to their positive qualities and potential to live a happy, productive and, possibly, somewhat ordinary life.