How 'I became more than the kid in the wheelchair'

By Louise Kinross

Max Setka, 21, is in his second year studying journalism and history at Trent University in Peterborough, Ont. Max has a long history with Holland Bloorview as he was part of our integrated kindergarten program. We spoke about what it was like for him to transition to university with a physical disability.

BLOOM: What is your disability and how does it affect you?

Max Setka: I have arthrogryposis, and it mainly affects my legs. I wear ankle-foot orthoses every day to stand, and depending on the weather and how I’m feeling, sometimes I use a wheelchair. I used the wheelchair a lot last year when I was in residence. This year I’m often walking.

The campus isn’t completely accessible because everything was built in 1964. But all of the classroom levels are flat and there are elevators in all buildings except for two—and one of those doesn’t have classes in it. I managed relatively easily using the wheelchair last year.

BLOOM: What was the greatest challenge of moving from high school to university?

Max Setka: For me personally, it was discovering how to adapt to everything. I obviously was very excited, but then it was like ‘Okay, how do I get to this place or all these different places?’ There was also some general anxiety about being away from home. But I’ve gone to Camp Awakening for 10 years, so I was used to being away. It was basically: ‘How am I going to manage 11 months of figuring out how to get to places?’

BLOOM: Is speed an issue?

Max Setka: It is sometimes. I try to give myself a certain amount of time and not rush places. I’ve had a few times where I’ve come into classes late and I’ve apologized at the end and said ‘I’m not the fastest person,’ and that it might happen occasionally.

The big issue for me in residence was leaving myself time to plan ahead for what I needed for three classes, so that I didn’t need to rush back to my room in between classes.

BLOOM: Do you have any accommodations in class?

Max Setka: I get note-takers. I can type, but my hands aren’t the greatest at speed and coordination. In the first class the professor will ask if anyone is willing to type or write out their notes and submit to an online system. Having someone else’s notes at the end of the class or day is one of my accommodations.

BLOOM: Did you work with an accessibility office on campus?

Max Setka: Yes. They have an accessibility services office. You go to an orientation in July with them, before school starts, and they explain that you’ll be assigned an advisor who will help figure out what you need. Then at the beginning of September you meet with the advisor. My other accommodations are extra time for exams and I can use my computer for all exams.

BLOOM: Did you feel supported in your accommodations?

Max Setka: The support is less hands-on than in high school. But if I need anything, I just shoot my advisor an e-mail. All of my professors have experience dealing with things like this. Unfortunately, I’ve got one class where the person who volunteered to take notes stopped after the first two weeks. Luckily, with this class, my professor posts literally his entire lecture, so it’s not affected me as much.

BLOOM: Was it hard or easy to make friends in your first year?

Max Setka: It was fairly easy. You meet a lot of people in residence. Trent is very passionate about connecting people, so we did a lot of floor meetings and activities together. I didn’t have the greatest roommate. I don’t know if my disability was a factor in that.

BLOOM: Were there other students with disabilities on campus?

Max Setka: I noticed my first year that I was one of the few people in a wheelchair. But having gone to orientations at accessibility services, I found there were quite a few people who maybe didn’t have physical disability, but had invisible disabilities or learning issues. So I didn’t feel completely alone.

BLOOM: I guess Trent can’t advertise itself as being full accessible?

Max Setka: No. They’ve got some building that can’t be retrofitted because they’re so old. But they do advertise as the first university in Canada to have an MV1 van. It’s a small wheelchair accessible van you can book and it will come and take you from one building to the other.

BLOOM: What was accessibility like in residence?

Max Setka: I was in the one residence that has elevators. My room was slightly wider than average. One of the things that was an issue in the first week was pushing open the door and closing and locking it. They’re very heavy fire doors. So the school attached an automatic opener to the door and gave me a small key fob.

This year I’m off campus, and I started using Peterborough’s Handi-Van, which is like Wheel-Trans. Otherwise I have to take two public buses and they're not reliable.

BLOOM: I understand you’ve been quite involved in extra-curricular activities.

Max Setka: Last year when I was in residence I ran, and was elected, to the student government in my building. Our job was to get people involved and help them feel that they were a part of the college even if they’d moved out.

We met every other Sunday and had to do required office hours. I think personally for me it made me noticed, because I was always around, and people would say ‘Hey, you’re that guy, right?’ I became more than the kid in the wheelchair.

BLOOM: This year you’re reporting the university's hockey games.

Max Setka: Yeah. I’ve always been a great hockey fan and because I can’t skate with a disability, I always looked for different ways to be involved.

BLOOM: How often do they play?

Max Setka: Right now it’s Thursdays and Saturdays every week. I do the full recap, so I have to be at the game and watching every move so I can write it down. I take notes on my computer. The idea is that by the end of the game the recap is out so that if you didn’t see the game, you know what happened before the newspapers publish it in the morning. Anyone can go on the team’s website to read it.

BLOOM: Isn’t it hard to get everything down as the game is happening?

Max Setka: No. I’ve become really proficient with typing. I take my little laptop and type as the game’s going. Typing has really helped my hands to be able to do more.

BLOOM: Are you interested in sports journalism in the future?

Max Setka: Yes, this is exactly what I want to go into. I love anything related to hockey.

BLOOM: What advice would you offer a high school student with a disability who plans on going to university?

Max Setka: I’d say don’t let your disability define what you think you can do. If you want to do something, go for it. In my first two weeks in residence I was writing applications for student government, and putting up posters and campaigning.

The other thing is to keep good communications with your school’s office of disability or accessibility.

BLOOM: Have you faced any ignorant attitudes about disability at Trent?

Max Setka: I haven’t. University is a different place from high school. People admire that you’re there and you’re doing what you’re doing. In high school, you may have an assistant with you, and there’s ‘a special room’ for students with disabilities. In high school there’s the perception ‘He’s from the special room, he’s always got this person with him.’ Coming to university I’ve been able to find out, and be, the kind of person I want to be.

BLOOM: Do you feel you’ve changed a lot?

Max Setka: I think I've found myself. I’ve gone through rejections and acceptances when trying to do different things. For example, I applied to be an orientation week leader this past September, but I didn’t get accepted. But that didn’t stop me from trying out for other things, like applying for this position with the hockey team.

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Doctors' disbelief is a common response to rare disease

By Louise Kinross

Laura Howson-Strong is an occupational therapist at Holland Bloorview who has worked with children with disabilities at two ends of the spectrum: as preschoolers readying for kindergarten at our nursery schools, and as teens preparing for transition to adulthood.

At a Schwartz Rounds last year, Laura shared what it was like to work with our families given her personal experience with rare disease. As a child, Laura had pain that oscillated between her stomach, her chest and her joints. Doctors told her parents she was attention-seeking and “making it up,” she says.

As a young adult her symptoms got worse. She was diagnosed with conversion disorder, “where the physical symptoms are real, but are caused by a reaction to stress or psychological trauma.” It took 11 years, several misdiagnoses and a lot of her own research, before she learned she had a rare connective tissue disease called Ehlers Danlos syndrome. Three years later she was diagnosed with a second condition, mast cell activation syndrome, an immune disease.

“When I heard about the Schwartz Rounds on health-care workers who are also health-care users, it spoke to me,” she says. “I thought: ‘Why don’t I tell people about my diseases and experiences? Why am I hiding, so to speak?’” 

“I realized I was keeping quiet because I had a lot of shame and doubt. In the past, I wasn’t supposed to speak about my symptoms, because they were something I was ‘doing’ to myself. But then I learned this was still happening to others. In 2018, children are still given mental illness diagnoses or going undiagnosed when their bodies are failing them. My story isn't uncommon.”

BLOOM interviewed Laura to learn more about how her personal experiences have informed her work.

BLOOM: What is your current job here?

Laura Howson-Strong: I’m an occupational therapist in experience-based employment programs like Youth@Work, Ready to Work and VolunteerAble. A large focus of my job is helping clients and families identify and build the skilled needed for transition to adulthood. It could be learning about job tasks that you can do and like; speaking to new people; ways to market yourself; and thinking about how you learn and how to ask for accommodations.

I’ve also worked in early learning with children with disabilities from birth to six.

Over time, I’ve heard so many similarities in the goal areas of these two populations. Things like: ‘How do I make friends?’; ‘How do I speak up to ask for help?’; ‘What can I do and what do I enjoy doing?’

BLOOM: What’s the greatest joy of your work with teens?

Laura Howson-Strong: I love being able to be part of successes and solutions. In some cases I’m able to see youth and their families throughout their young adulthood, so I’m able to see the change and the progress over time.

BLOOM: Why is Rare Disease Day on Feb. 28 important?

Laura Howson-Strong: First and foremost, there aren't enough of us to represent ourselves, and many rare diseases go undiagnosed. So we need allies. We need people and communities and organizations to spread the word to bring awareness to these diseases, and to have decision-makers better understand their impact. We need help to advocate for increased funding, knowledge, research, treatment, and possibly cures. I’ve learned that the majority of the rare diseases out there don’t have cures.

For me, I worry that in light of the incredible medical advances going on, a cure for my disease may exist in a cure for another disease. But it might never come to fruition for me, because the right people aren't aware that my disease exists.

Rare Disease day is also an opportunity to celebrate our journeys and uniqueness and beauty and strength. We’re not made to fit moulds, and that should be recognized and honoured.

It's also important because we need to end the unnecessarily complex and sometimes damaging diagnostic processes people experience. Mental illness diagnoses should not be a common step of your medical pathway to getting a rare disease diagnosis.

Right now, denial of symptoms, of services, and of the support we so desperately need within the healthcare system, is a common thread in many of our stories.

BLOOM: What is your diagnosis and how does it affect you on a daily basis?

Laura Howson-Strong: My primary diagnosis is Ehlers Danlos syndrome (EDS). EDS is varied, individual and multi-systemic. It’s a genetic connective tissue disorder with symptoms that range from mild to debilitating. Many of our symptoms have diagnoses of their own.

It affects me daily, all day, every day. The main issues I deal with are chronic pain, joint dislocations, fatigue, gastrointestinal problems and nerve damage.

BLOOM: How do you manage?

Laura Howson-Strong: Daily medications. A lot of them. I also use braces. Some constantly and others at different times of the day. I have ankle-foot orthoses, a neck brace, hip braces, finger and wrist braces. I use a cane for difficult days, long distances and bad weather. 

It's different for each person with EDS, but I manage pain and fatigue through medications, joint injections and positioning—the way I move my body, the way I sit and the way I reposition myself. I set up my days to have a variety of movement and rest activities. I’ve tried a lot of rehab and therapies, and I’ve stuck with swimming therapy and physiotherapy. I’m going to a private specialty EDS clinic in Ohio this year to pay for medical services.

BLOOM: Is there not one in Toronto?

Laura Howson-Strong: Luckily, a new rare disease clinic opened through the University Health Network last year, and I'm on a long wait list for it. At this time, it's a diagnostic clinic only. I look forward to eventually connecting with doctors familiar with EDS through this clinic.

I'll be paying thousands of dollars to go for treatment in Ohio to address loose joints in my neck that dislocate easily. It will likely include Botox, bracing and therapy done by a doctor.

BLOOM: What is your hope for the trip?

Laura Howson-Strong: Pain reduction, better treatment of the symptoms, more EDS-specific knowledge and validation of my symptoms.

BLOOM: You also have an immune disorder. How does that affect you?

Laura Howson-Strong: I have an overactive response to allergens, but it's difficult to determine what allergens because the response is not consistent. It could be clothes, food, the environment or my own heat and sweat. I get symptoms of anaphylaxis such as rashes, swelling, throat closure and difficulty breathing. I take medication to decrease the response, rest, and sometimes go to the hospital. Mast cell activation syndrome can be connected to EDS, but the connection isn't fully understood.

BLOOM: How does having a rare disease add value to your work?

Laura Howson-Strong: I was an occupational therapist first, and a patient second. When I was at school, I had no diagnosis.

When I entered the health-care system as an occupational therapist, I was shocked at how much I struggled to navigate and to speak up. I was educated in health care, yet I became lost and overwhelmed.

When I was diagnosed with conversion disorder, I was shut down by doctors. They would say ‘the basis of this is psychological or psychiatric, and I don’t have the services.’ They refused to refer me on to specialty clinics for the physical symptoms I had.

I lived a few years of my life thinking I was causing this myself. I began to hide the symptoms, the pain, and I just didn’t talk about it. This interview is going to be the first time that many of my friends and family hear that I was diagnosed with a rare disorder, let alone conversion disorder.

One way my experience influences my work is that I really think about how we value the voices of youth. How do we include them in decision-making, and in appropriately understanding their treatment plan and being part of their plan?

I think we're trying hard to do that as an organization, but I still think we have a ways to go to make sure children have their voices and concerns heard during appointments, and have opportunities to get their questions answered in the health system overall.

BLOOM: How do your own experiences with pain and disability inform your work?

Laura Howson-Strong: As a patient, I was so surprised to learn how much the medical system expects of patients and caregivers: to be a system navigator, a doctor liaison, an organizer, a nutritionist, a therapist, a record-keeper. I learned it’s exhausting and sometimes almost impossible.

Today I can better see how much pressure we put on parents to do everything—to keep connected, to be a parent, to be a therapist, to be a doctor, to manage all the appointments, to manage all of the paperwork.

When is there time for parents to self-reflect, network, participate in self-care, or just have fun?

It makes me look at what I expect from families in sessions, and to cut down on the number of recommendations and goals I have. When I set goals with families now, they have to work into their everyday lives and be important in the here and now.

BLOOM: What’s the difference between what’s ideal and what’s doable?

Laura Howson-Strong: We have a tendency within the medical model to want to fix problems, so we give lots of recommendations. We give them with good intentions, but we don’t understand how much it might take for the family to do just one of those things within the day.

With rare diseases and disabilities, you see a lot of different doctors and therapists. You’re given a whole bunch of goals and treatment plans from each one, and the amount of work combined is often overwhelming.

I’m very aware of the guilt clients and parents can have when they don’t accomplish what they were supposed to do. Am I doing everything possible? Should I be doing more?

BLOOM: How have your thoughts about disability evolved?

Laura Howson-Strong: For the last decade I’ve had a firsthand look at how deep the roots of stigma around disability are—the ways people judge those with visible and invisible disabilities.

My disability is primarily invisible. I’m still getting used to being yelled at by strangers for parking in the accessible parking spot. Or trying to figure out what to say to people when they ask: ‘Does your husband regret marrying you?’

I’ve had the experience of crossing the street in downtown Toronto and falling, and I was surrounded by 15 people, and not a single person stopped to help me up. I had to call out ‘Are you kidding me?  have an invisible disability and I need someone’s help.’

I thought I had an understanding of the stigma of disability. But until I became disabled more visibly, I had no idea.

It makes me consider how I build the skills clients and families will need in the health-care system, and in bigger-picture society. Things like advocacy, decision-making, speaking up and resilience.

BLOOM: Do you have any personal advice for youth who feel stigmatized?

Laura Howson-Strong: Trust yourself. Trust your instincts and keep trying. Remember that it’s okay to not be okay sometimes.

Remember that you're not alone. Growing up thinking 'Am I sick, am I not sick?' and then on the other side, having two rare diseases, I've often thought 'Oh gosh. I'm so alone.' But it's important to remember that even if people aren't going through the same thing, there are so many commonalities, so many ways we can come together as a community and group to support each other emotionally.

One of the best things for me is saying 'It is what it is.' I can't control the outcomes, but I can control how I react to it.

We can’t do the health system alone. We need to reach out for help.

BLOOM: How can you find support when your condition is rare?

Laura Howson-Strong: Consider looking up online support groups and communities for disability and rare disease. You could also ask for help from other people in your life, like family, friends, teachers or your doctors or clinicians. There are great youth mentors here at Holland Bloorview. They may not have the same rare disease diagnosis, but they do have firsthand experiences of disability within the health system and the community.

BLOOM: What could we do as an organization to better support families affected by rare disease?

Laura Howson-Strong: At a basic level I wish there was more acknowledgement of rare disease, and access to services. In the health-care system, having a rare disease can restrict your access to clinics, because we don’t fit into the clinic criteria or share the same diagnoses as typical patients. I’d like to see a Holland Bloorview support group or information night for families affected by rare disease.

BLOOM: I would imagine we have hundreds, if not more, families living with rare disease. Jennifer Brea’s film Unrest is creating a lot of buzz about people with rare, chronic illness who are dismissed as being stressed out or mentally ill. What was it like for you to watch that film?

Laura Howson-Strong: Because I haven’t spoken out about my journey through mental illness to rare disease, it was really interesting and validating to hear my own experiences through someone else’s words and thoughts. It really made me feel like I’m not alone in this process, even if the end result is not the same diagnosis. There’s still so much support and love and community that we can give and provide to one another.

BLOOM: There’s a scene in the film Unrest where Jennifer Brea’s husband talks about how their life can feel quite normal and good when they’re on their own. But when they go out into the world, people are constantly reminding them that they aren’t able to do things that their peers are doing.

Laura Howson-Strong: One of the hardest things for me is when people look in and feel sorry for me. Or feel my life could be better. Or feel this can only be a negative thing in your life. Having a rare disorder absolutely turns your life upside down, and things that you wanted, or had planned for, don’t always turn out the way you hoped.

But for every difficult memory I have of my health or the health system, I can think of incredibly positive or funny experiences. Some of my greatest assets have been developed because of my rare disease—like my strength and self-determination, to the point of stubbornness, and my ability to problem-solve. I wouldn’t be the person I am today without the difficulties and challenges I’ve faced.

My disease is progressive. Knowing I may not look the same way in five or 10 years impacts my goals, and what I truly want to spend my time doing. What ultimately matters is I have a family and friends who I love, and I do things in my day that are important and meaningful to me.

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Sadie opened my eyes to reading bias: Audiobooks don't count

By Emily Urquhart

Last week, I encouraged my daughter, Sadie, 7, to cheat at school.

At least she saw it that way.

I’d suggested that during independent reading period she might occasionally listen to an audiobook rather than sight read.

Sadie has low vision but is not a braille reader, so she uses devices like a dome magnifier, an iPad, or a closed-circuit television (CCTV) to read regular-sized print. Sometimes, if the font is oversized (and no, large-print won’t cut it) she can hold a book inches from her face and make out the letters. Digesting her schoolwork aurally can provide a much needed break from this constant visual work-out. Besides, reading is reading, right?

Not according to everyone. My daughter isn’t the first person to suggest that listening is cheating. Adults say this all the time, incorrectly understanding listening to be a passive activity and by proxy suggesting audiobook fans are doing less “work” to achieve the same goal as sight readers.

First, I’d argue that reading is pleasure, enlightenment and access, not work. Second, as a folklorist, I know that stories were oral before they were written. We’ve been literate for 6,000 years, which is a long time, but only a fraction of our evolutionary history. The act of reading partly relies on brain circuits that originally evolved about 150,000 years ago to process language. So sight-reading is actually piggybacking on the pathways used for oral comprehension. This makes sense when you consider that humans have been telling stories since time immemorial, but the novel wasn’t popularized until around the 18th century.

What I wanted to know was how the sight-reading purists had infiltrated my daughter’s belief system when audiobooks and reading-out-loud have been an integral part of our life since before she could speak. My hunch is that it was an inadvertent side-effect of learning in a sighted classroom.

My daughter's sight-reading education is based on a rewards system, meaning that when she reaches a milestone (i.e. 50 books read) she can choose a prize. She does not receive rewards for audiobooks. This has set her up to value sight-reading over audio-reading. It’s also shaping her reading self-concept as she ranks herself against her sighted peers, despite working double-time to view the words in their home reading textbooks. All children compare their reading achievements and kids with disabilities are not immune to this practice.

This means that my daughter sees herself as an average reader despite the fact that she has listened to the entire Harry Potter series five times; that her favourite book is L.M. Montgomery’s emotionally mature, The Story Girl, and that last weekend she listened to Madeleine L’Engle’s, A Wrinkle in Time, on Saturday and on Sunday began listening to Mary Pope Osborne’s kid-friendly interpretation of The Odyssey—arguably the best way to digest this 3,000-year-old oral epic.

I’m proud of these achievements. But I worried. Could Sadie be forming an early reliance on audio when print will also be part of her education experience? I posed this question to University of Virginia psychology professor Daniel T. Willingham, author of Raising Kids who Read: What parents and teachers can do.

First, Willingham explained that there are two components of reading—decoding and comprehension. As my daughter memorizes letters, words and sounds and pairs them together to form sentences, she is decoding. What she brings to the table is her existing knowledge of the world—from the narrative flow of a story to the basics of science, math, history, literature and culture. And this feeds comprehension.

“When it comes to comprehension, for most adults, reading and listening are on par,” Willingham said. But, he pointed out, at my daughter’s stage, reading and listening are serving different functions. Listening to audiobooks helps build knowledge, which is integral to reading comprehension, while the visual act of decoding is a practiced way of becoming proficient at sight reading.

Back when Sadie began the process of learning to read, I asked her vision teacher what would come first for my daughter—reading or mastering her arsenal of vision tools. She’d let the question hover in the air for a moment so that I could find my own answer.

We were sitting together at a child-sized table as I learned how to use one of my daughter’s complex classroom visual aids. It’s a laptop that doubles as a table-top magnifier, connects to the smart board, and has an adjustable arm that you can point at the blackboard to have the image appear on your screen. As I tinkered, the answer came to me.

“She’ll learn to read and use her tools at the same time,” I’d said. “Because the two are inseparable for her.” The teacher nodded. I’d got the right answer.

Learning to decode is an important part of the overall process for a low-vision child who will be a visual learner, so I’ve relaxed my stance on the reading chart. As Willingham told me, “Once you know the notes, you can play music however you like.”

I did consider making an audiobook checklist with the aim of Sadie learning to weigh listening and sight reading in the same way. Then, I remembered an early summer evening when my husband and our two kids began a long road trip and we’d coasted into the night on the melody of Jim Dale’s voice recounting Harry Potter’s first year at Hogwarts. Four hours later, tear-stained and exhilarated, we’d pulled into the driveway of our holiday rental home.

Sadie, wide-eyed and rapt with attention in the back seat, couldn’t bear to have the story interrupted, and, truthfully, neither could her parents. So we left the motor running for a little while longer just to find out what happened next.

Looking back on that night, I realized that my daughter didn’t need a prize chart. She already knew the most important thing about reading: No matter what format, the story is the reward.

Emily Urquhart is a Canadian writer and folklorist and author of Beyond the Pale, a memoir about raising a child with albinism. We interviewed her about the book when it launched in 2015. 

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Family fund is a lifeline, but demand outstrips supply

By Louise Kinross

Anyone who knows Geoffrey Feldman knows that he's an extraordinary parent.

“I'm not a typical dad,” he says with a chuckle.

At 76, Geoffrey's raising his 16-year-old daughter Isabelle, who has a rare genetic condition, on his own. 

“Having a special-needs child is extremely expensive,” he says. “If I wasn't working on a contract right now, I'd be finding it hard to make ends meet.”

Since 2011, Geoffrey and Isabelle have benefited from Holland Bloorview's family support fund, which covers items and services that promote child and family wellbeing. 

The donor-supported fund, which has a budget of $250,000 a year, recognizes the extraordinary costs associated with raising a child with a disability.

For Isabelle, it's meant swimming lessons, dance and art classes and being a camper in Spiral Garden, our summer arts program in the ravine behind the hospital.

“Isabelle will need supervision for the rest of her life, so I'm trying to give her these activities that will help her learn to better fend for herself,” Geoffrey says. “These programs have given her an amazing amount of confidence. She now has a group of friends that have become her social peer group.”

According to Adva Budin, who administers the family support fund, “equipment, recreation and respite are the most utilized categories. It may be addressing a child’s complex needs with equipment, providing recreational programs to benefit a child’s development, or helping with the cost of respite at home.”

For example, families can apply for a maximum of $1,500 towards equipment like wheelchairs, walkers, commodes and helmets. They can also apply for up to $500 for prescribed medication that isn’t covered by insurance or OHIP +.

A maximum of $1,000 is available toward equipment that supports quality of life, such as communication devices and writing and hearing aids. Another $500 can be dedicated to summer camps and swimming, art, music and sports programs.

And parents can get support for their own ”day-to-day coping,” Adva says. Parents can apply for up to $500 to support a respite worker at home or at camp, or a child’s stay at a respite facility.

Another $250 is available to cover TTC passes for families who are not able to access Wheel-Trans.

The fund received 710 applications in the first nine months of this fiscal year, depleting it to the point that new applications are on hold until April 1. 

Holland Bloorview's foundation hopes to raise significantly more dollars to grow the annual fund next year.

“The need is increasing,” Adva says, “especially with President’s Choice Children’s Charity ending its program to support children with disabilities.”

Applications are manually processed by Adva and scored by a group of volunteers. Families need to include a letter of support from a health professional.

Families consistently express gratitude for the program, Adva says. “I frequently hear from families who are purchasing extremely expensive things, like a modified van, and they say every bit of funding they can get is critical. I also hear a lot from families who are fatigued and burned out emotionally, and they need respite. Some people are just so grateful they can put their kids in a swimming program and see them happy and smiling. So it’s the little things, too.”

To donate to the program, please click here or call 416-424-3809. Applications for the fund will be available online on April 1.

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Families find few options for future planning

Photo from White Coat, Black Art

By Louise Kinross

A couple of things converged on my screen this weekend about how families find, or to be more specific “don’t find,” housing and services for their adult children with intellectual disabilities.

First there was this podcast on CBC’s White Coat, Black Art, about a family whose 18-year-old daughter with severe autism is aging out of the pediatric system. “A day with Gilly, a teen with autism and developmental delay on the cusp of aging out of the system—and her parents who are expected to pick up the slack,” is how host Dr. Brian Goldman described it.

The family noted that they have signed up for Developmental Services Ontario, but that the wait list for a group home is 25 years. In the meantime, Gilly needs supervision in the home and even walking out to her school bus each morning. Her dad says that about 50 per cent of the time she refuses to get on the bus. At night, her parents take her out for four to five car rides, her favourite activity, before bed. She has limited speech. At 21 she will age out of school. Few day programs will accept a child with the kind of support needs Gilly has, said her mother Rachelle. Gilly is one of about 12,000 adults with intellectual disabilities waiting for housing and other services.

“Our fear is that there isn’t a clear plan,” her mother Rachelle said.

This family is not alone.

On Friday, I read about a U.S. study that found less than half of 388 parents of children with intellectual disabilities had made long-term plans about who will take over their child’s care if they, or another relative providing care, dies or becomes disabled. The parents ranged in age from 40 to 83, with children aged three to 68. More than 77 per cent lived with their parents or another relative.

Parents were asked whether they had completed 11 items related to their child’s long-term needs, such as identifying a successor to the current family caregiver, researching residential programs or establishing a special-needs trust.

The study, accepted for publication in the April edition of the journal Intellectual and Developmental Disabilities, found that over 12 per cent of participants had not taken any of these actions, while more than half had done only three planning activities.

Those three tended to be working on things like finding an attorney and discussing future care plans with their child and family. What they hadn’t done was take concrete steps to arrange housing or to write a letter of intent to guide future caregivers.

More than 61 per cent said the lack of residential, employment and recreational services to meet their child’s needs was a huge barrier.

“Nationally, 75 per cent of people with intellectual and developmental disabilities don’t have access to formal services,” says lead investigator Meghan Burke, a professor of special education at the University of Illinois. “It may be that many families think ‘why plan for services, when there are no services currently available?’”

Yes, that just about sums it up perfectly, from my perspective.

I wrote to Meghan to explain that even though I’ve worked at Holland Bloorview since my son was four, and I knew I was "supposed" to plan, I still don’t have critical pieces like housing figured out. And my son is almost 24 now.

With a wait list of 25 years for publicly funded housing, how can you plan, unless you have the money to purchase real estate yourself?

Meghan responded by saying that she can empathize with my situation because she has a 24-year-old brother who is on a wait list for residential services.

“I am also the parent of a child with a disability myself and am terrified for the future of my own child,” she wrote. “You are absolutely right—for future planning to occur, we need systems change. Point blank. Residential planning is certainly one, perhaps even the most, important part of future planning.”

But Meghan said there are other parts of planning that don’t depend on government services. “We looked at whether family members had discussed the future, decided on whether conservatorship or guardianship would be appropriate, developed a special-needs trust, or created a letter of intent.”

Other activities include sharing with family members a list of the child’s doctors and daily schedule, showing siblings where important documents like a trust or will are kept, or developing a support circle.

Money was a significant barrier to planning for more than 46 per cent of families, and more than seven per cent said the topic was too “emotionally loaded” for members to talk about.

When I first came to Holland Bloorview, I wrote articles about sibling issues. One of the most important things experts always said was to have a long-term plan, so siblings don’t assume care falls entirely to them when their parents die. 

But many families, like Gilly’s, and those in the U.S. study, and my own, don’t have housing pinned down. That makes it hard to talk with siblings, because there's such a huge unknown. On the other hand, we do know from research that siblings have anxiety about the future care of their brother or sister. I think these two realities put many parents between a rock and a hard place.

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While cute, Gerber's baby unlikely to prompt major social change

By Louise Kinross

CBC’s The Current ran an interesting series of interviews this morning about Down syndrome and some of the conflicting messages we hear about it.

The host noted that Gerber’s new ad campaign (above)—where they named a child with Down syndrome as their Gerber Baby for 2018—comes at a time when genetic testing is more sophisticated and most women terminate when they receive a prenatal diagnosis of Down syndrome.

David Perry was one of the people interviewed. He’s an American dad to an 11-year-old with Down syndrome, a professor and a columnist with Pacific Standard magazine.

“Although the Gerber Baby is super cute,” he said, “I’m very skeptical that it’s a particularly significant moment in the long journey towards acceptance and inclusion for people with Down syndrome, and disabilities more generally.”

David noted that in 2012, Target and Nordstrom both had ads featuring “a really cute white toddler with Down syndrome,” but it hadn’t led to any significant improvements in everyday inclusion for kids with disabilities.

Parents “need information about schools and supports and jobs and life-long inclusion,” David said. “I’d like to hear Gerber say we’ll be employing thousands of people with Down syndrome,” or supporting families whose children have complex medical food needs. “What is the next step?” he asked, “and what is Gerber doing about it?”

Ironically, Liz Atkinson of Burlington, Iowa posted on Facebook yesterday that Gerber Life Insurance, an affiliate of the Gerber brand owned by Nestlé, does not cover children with genetic conditions. Her son was denied coverage when she applied from the neonatal intensive care unit in 2014. She explained that when her son was born prematurely with a chromosome disorder, NICU staff advised her to apply for insurance for him, in case he died and they had to pay burial fees. “Good enough to be the company’s face, but not good enough to insure,” she wrote. 

She explained more in this Facebook video.

However, Nestlé US tweeted: "Gerber Life does insure many children with Down syndrome as well as other conditions.”

It would be great to know Gerber Life's specific criteria for when they will, or won't, cover a child with a genetic condition.

Stories in The Mighty and Business Insider suggested Gerber Life had a history of denying coverage to children with Down syndrome.

Also interviewed on CBC this morning was Vardit Ravitsky, an associate professor of bioethics at the University of Montreal. She spoke about the ethical implications of prenatal testing.

“Knowledge is power,” she said, “but it can also be vulnerability.”

She noted that when parents receive a prenatal diagnosis ‘you’re not well-informed, you didn’t get the full picture, and you’re under time pressure because the pregnancy is moving along.”

She said the way a diagnosis of Down syndrome is presented to parents is often not balanced.

“Studies have shown clinicians, when it comes to Down syndrome, really focus on the health complications and they’re not usually well equipped to give the full picture…” she said. “Some of the clinicians have never met a kid with Down syndrome. It’s not in their lives, and it’s not necessarily part of medical education and they don’t have the tools to discuss the full picture with women.”

Vardit said through the Pegasus research project she’s developing resources for pregnant women and clinicians that include interviews with families raising children with Down syndrome.

“My main message is that testing must be a decision that is completely informed, supported and free,” Vardit said. “A free choice means that if you reject testing, you won’t be criticized or judged…Once the child is born, we have to create a society that’s not just looking for the cute babies, but that really supports families through the life cycle...”

Sadly, we heard this week that a British inquest into the death of a 33-year-old man with Down syndrome found gross failures in his care, both in the care home he lived in, and in his hospital treatment. Richard Handley died in 2012 from a preventable and treatable condition—constipation—after having 22 lbs of fecal matter surgically removed. His family said his stomach was so distended he looked like he was 40 weeks pregnant. But no one acted at his care home, until it was too late. Six months later, another person with intellectual disability died of constipation at the same hospital.

David noted on CBC that “the Gerber ad is getting a huge wave of publicity across social media and mainstream media…” But “what is the next step” in the treatment of people with Down syndrome, and other disabilities, over a life time?

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A girl who wanted to disappear becomes 'The Pretty One'

By Louise Kinross

Keah Brown is an American writer working on a book called The Pretty One, which is a collection of essays about living as a disabled woman of colour in a white, abled world. Keah studied journalism at the State University of New York at Fredonia and lives in Lockport, N.Y. She’s a senior entertainment writer at ClicheMag.com, and her essays have been published in The Rumpus, Harper’s, Teen Vogue and Lenny Letter. I first heard about Keah a year ago when she launched a photo campaign with the hashtag #disabledandcute on Twitter and it went viral. I wanted to talk to her about the impact of racism and ableism when she was growing up.

BLOOM: How did your experiences as a black, disabled woman figure into your desire to write?

Keah Brown: Writing is something I’ve always done. Even in secret, when I was growing up, I had little notebooks that I’d write songs in. And the songs would become poems, and the poems became stories, and it was a natural progression.

When you grow up not seeing yourself represented in any form of media outside exploitative telethons, you get the urge to say ‘Hey, that’s not how any of this works.’ I’m here to tell my story because I don’t want to be forgotten, or be assumed to be a certain way when I’m not.

The Pretty One is about our need to change the culture and the ideas that shape the way we see disability, because they’re harmful. The Pretty One is about joy, and about finding a way to the other side of what is self-hate or poor self-esteem.

The narratives we usually see are about people with disabilities who hate their bodies. We often see that in movies, where a disabled character wants to die. I wanted to showcase how someone who feels those things comes out of it—and the work that takes—and the process of getting to be a person who is very much joyful and happy and full, in a way she never was before.

Obviously there’s going to be a bit of heartbreak and loss and grief. But ultimately The Pretty One is about joy.

BLOOM: So the book is written as a series of essays?

Keah Brown: It’s a collection of 13 personal essays, at this point. I'm not sure if that will change. We’re shooting for a release date of spring 2019.

BLOOM: You’ve written about having cerebral palsy. How does it affect you?

Keah Brown: I have hemiplegia, so it affects my right side. I’m able to walk, but I need to take breaks, and I get aching limbs and arms and hips. But at this point, I don’t use a mobility aid.

BLOOM: Last year you wrote a beautiful piece on Roxane Gay’s book Hunger in The Rumpus. It begins like this: ‘There’s a moment in every day where I think of my younger self—the fifteen-year-old me, the sixteen-year-old me, and the twenty-year-old me who prayed morning, noon, and night to be rid of my body. When I was younger, my scars, bruises, bent fingers, limping leg, and crooked lips disgusted me.’ In the essay, you write about your desire for invisibility when kids would ask you what was wrong with your body.

Keah Brown: Because I wasn’t surrounded by many other disabled people, let alone kids, I saw my disability as this thing to run away from, or to try to pretend that it wasn’t there. I had a very happy childhood from kindergarten to Grade 5, and Grade 6 was when I realized I had a disability.

With my other siblings—I have a twin sister and a brother—they’re able-bodied and my mom never treated me any different. Whatever they got I got, and we never talked about my disability in terms of it being this difference and that difference was bad.

Then when I got to middle school and kids made fun of me in the cafeteria, it kind of stuck with me. If someone made fun of this thing that was different, then it must be bad. So I spent a lot of time wishing to be invisible and wishing that I would wake up in another body. I felt I was being punished in the body I had. I wanted to be just like everyone else and to blend in. I was tired of people asking questions and staring at me.

BLOOM: What would you tell other children whose differences make them want to disappear?

Keah Brown: The best advice I can give is that they are who they are, and all that they are is enough. It’s not only enough, but it’s beautiful and worthwhile, and their bodies tell a story. It doesn’t matter if they don’t look like a certain person, or look a certain way. What matters is that they figure out who they are, and celebrate that. That is the person they're stuck with for the rest of their life, so it’s important that they learn to love that person.

BLOOM: You’ve written about how when children don’t fit conventional European white standards of beauty, there’s almost an expectation that they should hate their body.

Keah Brown: Absolutely. There’s this idea that if you’re different you should feel bad about being ‘other’ and breaking the mould. When you do that, people don’t know what to do with you. They assume you don't know what to do with yourself, and you should be uncomfortable, because they’re uncomfortable. To those of us who are different, our differences make us unique. Those unique things make us who we are, and who we are is enough.

BLOOM: You created the Twitter campaign with the #disabledandcute hashtag. What did you hope to achieve with that?

Keah Brown: I didn’t hope to achieve anything. I started it for myself and posted four pictures and the hashtag, just to celebrate myself and other disabled men, women and non-binary people. I wanted to say ‘Hey, I finally feel good in my body and you should too.’ Then I left Twitter and went back to an essay I was writing on a deadline.

When I came back, #disabledandcute was trending. By the end of the week I was interviewed by a bunch of different publications, and I learned that #disabledandcute went viral and spread from Twitter to Facebook to Instagram and Tumblr.

I began it to try to celebrate myself, but it became a thing where all disabled people could celebrate themselves. That’s what I’m grateful for. It will be a year this Monday that I posted it.

BLOOM: As a child, how did you experience racism and ableism.

Keah Brown: I didn’t really know what they were as a child. People would speak to me really slowly and would be condescending, as if they assumed I didn’t understand them.

I was never ashamed of being black and in terms of racism, we were sheltered from most of that in my childhood. There were small comments that people made. But never anything that I really had to internalize or keep to myself, in the way I had to with things people said about my disability. Disability as a 'bad' thing outweighed my blackness.

I was always very proud of being black and confident that being black was something beautiful. I grew up in a household of other black people who loved themselves, so I loved myself too. Our blackness was something we had in common, whereas disability was the thing we didn’t share.

I felt disability separated me from my twin sister. I just wanted to be like her and look more like her. I wanted all of these things I thought she could have that I couldn’t have.

BLOOM: Was disability accepted in your family?

Keah Brown: I did feel accepted. I have a humongous family and they were very much always ‘That’s just Keah. It’s who she is.’ My disability wasn’t like a thing that people were weird about. It was what it was. It wasn’t something we addressed or ignored, or pretended that it wasn’t there. It was seen as an aspect of me, but it wasn’t all that I was.

BLOOM: Did you ever feel your disability was marginalized in the black community?

Keah Brown: Not really. The majority of the comments I received as a child—and even now—come from white people. People of colour tend not to say much to me about my disability, unless they know me. The stares and the mocking and the talking slowly is a thing a lot of white people have done. Most of the rough experiences I’ve had have been from white people.

BLOOM: You’ve written about lack of accessibility. What message does it convey to people with disabilities?

Keah Brown: In my freshman year in high school I had a big surgery, and then I had to come back a year later and have a plate taken out. That’s when I realized how inaccessible the building was. There was a kid named Mason who used a wheelchair and I used a walker, and we had to go to the back of the school just to get into it. The elevators were really slow and it took us longer to get everywhere.

These are all things abled people take for granted—that they can get to and from places without any problem.

Today, it's still a really big issue for me. I can’t get down the stairs safely in a mall. Going up the stairs is fine, but coming down I have to reach my left hand over my right arm to hold the rail.

What was good in my childhood was that there were always people around to help me before I knew I needed help. They helped me figure out ways to trick an inaccessible system. That's how I figured out how to put my left hand over my right one to get down stairs.

Or if I’m standing for a long time, I shift my weight from left to right so that my whole right side isn’t aching by the time I move again.

I spend a lot of time in my house, which is very accessible, and in my room where I write. It’s a single level house with a basement that's easy for me to get down to.

I’m able to figure out how to navigate in my own house. The issue starts when I get to public places and they don’t have the same accommodations.

BLOOM: I read that you went to a largely white high school and college. How did that affect you?

Keah Brown: I think what I know now I couldn’t articulate then. When you don’t see enough people who look like you during the day, you start to retreat into yourself. Even though there’s nothing wrong with my black skin, you keep some things to yourself, because you’re trying to navigate a world that's vastly different from the one you knew before.

In a primarily white institution, I was taught mainly about white writers and journalists. I had to look outside the classroom for writers of colour, and to find heroes of my own who looked like me.

The way I handled those experiences was to lean on other people of colour who could commiserate with me. They understood what it’s like to experience multiple micro-aggressions from other students.

BLOOM: Were these people outside the school?

Keah Brown: No, they were the few other black students. We’d acknowledge each other with a head nod and eat lunch together and go to the movies and hang out.

BLOOM: You said that your book is about the process of getting to a point where you love your body and celebrate it. How did you get to the other side?

Keah Brown: Girl, a lot of tears and definitely counselling, and trying. I tried for the first time. What I’ve found is that sometimes you want something but you don’t really work for it. I had to really confront my own problems with disability, and not just my own disability.

I had to confront my own internalized ableism and views about what disability is and what it can be in order to make myself a better person.

I got tired of living my life like it was the world’s worst punishment. I got tired of getting up and feeling like ‘I hate you, you’re ugly,’ and insulting a body that was doing the best it could to keep me alive.

I thought I was giving myself these insults to prepare myself for when other people said them. But it never made me feel better.

I had to actively try to be kinder to myself. I found something I liked physically and mentally about myself, and worked every single day at it. Self-love and self-worth is an everyday practice. This is not a one-time thing. It’s a constant.

BLOOM: You mentioned counselling was helpful. Was it hard to find a therapist who understood about disability?

Keah Brown: I went to counselling at college because it was free. The first counsellor, while I’m sure she was a lovely person, didn’t work out. She treated me as though my self-hatred was something I should just be over.

That’s an issue that sometimes happens when a person doesn’t have physical disabilities. They don’t feel comfortable around disability, so they want you to be over it, and not talk about it.

The second counsellor I had was brilliant and did a really good job.

Counselling helps. I also had to do a lot of internalized work where I acknowledged that I’d met these disabled people online that I love, and they mean the world to me, and it was time to start looking at myself with that love.

Throughout my time of self-discovery I also read books and found fictional characters to fall in love with and grow with. I found bits and pieces of things they did that I thought I could emulate.

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Carrying friend in backpack, next stop China

By Louise Kinross

In 2016 we told you about Kevan Chandler's trip to Europe with friends who carried him in a modified backpack when places wouldn't accommodate his wheelchair. Kevan, who lives in Fort Wayne, Indiana, has spinal muscular atrophy and weighs about 65 lbs. Sitting in an adapted child carrier worn by his friends, Kevan and the group hopped over stiles in the British countryside, climbed up 600 rock steps to an Irish monastery, and checked out the underground cemetery in Paris. 

Since then, Kevan and his friends have released a film of their European travels and started a non-profit group to promote accessible travel. Kevan now has his sights set on a trip to China in 2019. We did this interview by e-mail.

BLOOM: Why did you decide on China as your next tour?

Kevan Chandler: Even while we were in Europe, the guys and I talked about visiting China. One of our guys has a niece and nephew who were adopted from China, and he'd gone with the family to get them. So we had that connection and perspective, plus we had interactions with numerous Chinese tourists while in France, which helped to prompt the conversation.

It's an old, magical, and exciting place to explore, and like anywhere in the world, it's also a place where we could maybe be an encouragement in regards to disabilities. Then, last year, a great door opened for us to connect with an organization called Show Hope that serves orphans with disabilities there, which really solidified the idea to go.

BLOOM: Will you be using the same backpack and also taking your wheelchair?

Kevan Chandler: We have a newly developed backpack, along the same lines as the original, but more professionally done. We'll be using that, and like our last trip, we won’ be taking my wheelchair.

BLOOM: Are you travelling with the same friends who carried you through Europe?

Kevan Chandler: We will have the same film crew, and two of the four carriers. The other two guys just had other stuff going on. So, we've added two other carriers, who are friends of mine from Fort Wayne. We will also have a translator with us and a project manager, who will keep us on track.

BLOOM: You plan to visit a series of care centres for children with health issues and disabilities supported by Show Hope. Why?

Kevan Chandler: Yeah, we are really excited for the opportunity! I'm reminded of what Jesus said about kids, and I can't help but see the Kingdom of God in these little ones and the folks working with them. So much need, so much vulnerability, and so much love to redeem it all. Who wouldn't want to be part of that? Our hope is to be encouragers of the good work that's already being done among the kids and care staff there. We can't wait to spend time with them, play, share our story, hear their stories, and also take some backpacks like mine for the staff to use with the kids.

BLOOM: Do you know what percentage of these children are adopted? 

Kevan Chandler: I'm not really qualified to answer this. And at the same time, we as a team are more focused on the current circumstances of these kids and meeting them in that, with the bit we can do to help. It's important to be faithful with what's in front of you to do, right?

BLOOM: Where will you be staying on the trip? 

Kevan Chandler: We plan to do some exploring around both countrysides and cities, but the Care Centers of Show Hope will be kind of like our hubs that we come back to and spend most of our time.

BLOOM: Are you anticipating any challenges in China that you didn’t experience in Europe?

Kevan Chandler: Well, there is the language barrier! Haha! There is that, but also a pretty extreme difference in culture that we will need to navigate. These are all things we dealt with in Europe, especially France and Wales, but China just takes it all to the next level, so we will have a translator traveling with us to be of assistance.

BLOOM: Are there particular places or historic sites you’re eager to see?

Kevan Chandler: Yeah, we are excited to visit the Shaolin Temple and the Great Wall, for starters!

BLOOM: I think you raised about $35,000 US to cover the cost of your Europe trip. How many weeks will you be in China and what will the total cost be? Is there a link to your funding page?

Kevan Chandler: Yes, and we were pleased to end up on a similar budget for this trip to China. With travel included, we will be gone about three weeks, like with Europe. This trip is budgeted at $40,000US, which makes sense because it's farther and our team is a bit larger (nine of us vs. the seven that went to Europe). We just launched our GoFundMe page this week, and since we're now a 501(c)3, any donations are tax deductible.

BLOOM: I notice you are taking a translator. Do any of you speak Chinese?

Kevan Chandler: Nope. That's why we have the translator, a really cool friend of ours from China who lives nowadays in British Columbia.

BLOOM: What messages about disability do you hope people take when they see you on your trips?

Kevan Chandler: I think it's bigger than just disability. We are all broken in some way or another, and we're all looking for some relief. So, when folks see a guy carrying another guy whose brokenness is so clear, I hope they see themselves.

What I love most when I travel is when walls come down and people just start sharing honestly about their own lives and experiences. It's a stark expression of what we all feel and desire inside, so we act as a kind of ice-breaker for people to look inward and dig deep. My hope is that that winds them up at a place of peace, whether they are encouraged or challenged, because both—if received—end up at the same place.

BLOOM: You said you’ve started a non-profit called We Carry Kevan since your Europe trip. Do you sell backpacks like the one you use? What does the non-profit do?

Kevan Chandler: We did start a nonprofit! We are working with Deuter to develop a backpack like mine for mass-production. Our hope is to have them available in the Spring of 2019. In the meantime, we are customizing a few backpacks ourselves here and there, and we are also taking time to tour, speak, and spend time with people.

Our mission statement says it best: ‘Believing in the inherent value of all people, We Carry Kevan mobilizes individuals with disabilities by redefining accessibility as a cooperative effort.’ That job of redefining involves a lot of examples lived out and a lot of conversations had, and it's been amazing to see those opportunities come with the nonprofit these past few years.

BLOOM: Do you know of any other people with disabilities who were inspired by your Europe trip to try to do something similar? I’m imagining that the backpack option only works for people who are very light?

Kevan Chandler: It's been wonderful these past few years to see, hear from, and meet folks, both disabled and able-bodied, who are inspired by our adventure. And the backpack was just our way of doing things. It will work for some people and not for others.

But the the backpack isn't the be-all and end-all. It's a tool to exercise the deeper idea, which is that accessibility comes with courage and creativity and people working together. So it's been awesome to see people getting that and acting on it in their own way. It's been a joy to come alongside them in their adventures.

BLOOM: Are you still working as a sound editor producing podcasts?

Kevan Chandler: No, actually! Just recently, I stepped out of that career to give We Carry Kevan my full attention.

BLOOM: What are your thoughts on the new treatment Spinraza for people with spinal muscular atrophy? Is this something you are interested in pursuing?

Kevan Chandler: I'm excited to see its positive effects on my sister as she participates, and my hope is that it does provide relief and strength for folks with SMA who go that route. I am personally not involved at this time.

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New hub to address developmental disabilities, mental illness

By Louise Kinross

The Azrieli Foundation has given $10.4-million to the Centre for Addiction and Mental Health to create the first centre in Canada to support adults with disabilities like autism and Down syndrome who also have mental illness.

“A lot of us have anxiety and depression,” said autistic advocate Daniel Share-Strom at an announcement at CAMH today. “Why wouldn’t we?”

Daniel described his world growing up as one where the speed and volume of learning, combined with social demands, was too much to cope with for someone who had trouble reading social cues and managing sensory information. He was always being corrected, he said, which led to a “pervasive sense of being judged all the time’ and of feeling ‘broken’ and ‘not capable.’

Daniel noted there are few adult psychiatrists who are skilled in working with people with autism, and they’re almost impossible to access due to waitlists. As a result, his mother had to purchase private services for him, at an hourly rate six times her salary. “There’s no off switch to these challenges when you turn 18,” he said. “I have difficulty finding help on my own when I feel hopeless. We need strong advocates when we’re immobilized with doubt.”

According to research from CAMH and the Institute for Clinical Evaluative Sciences, 45 per cent of about 65,000 adults with neurodevelopmental disabilities in Ontario have a mental illness, and six per cent have addiction. Due to a dearth of services, a study published in the Canadian Journal of Psychiatry found that almost half of hospital admissions for Canadian adults and teens with developmental disabilities were related to mental illness.

“There are no services that provide the continuous, comprehensive care necessary for this population,” said Naomi Azrieli, CEO of the Azrieli Foundation this morning. “This is the most vulnerable population in our healthcare system.”

The new Azrieli Centre for Adult Neurodevelopmental Disabilities and Mental Health will provide better care, research and training in the field. It is being directed by Dr. Yona Lunsky, a psychologist who leads the Health Care Access Research and Developmental Disabilities Program at CAMH. Yona has a sister with a developmental disability.

Yona has led a number of studies evaluating interventions for reducing depression and stress in parents of adults with developmental disabilities. Naomi said that families are the “first level of care” for adults with disabilities, and that they are not being supported. “The normality of constant worry and anxiety becomes a backdrop to everything,” she said at the CAMH announcement. Naomi has a brother with Fragile X syndrome and said the family's personal experience played a role in the decision to fund the new centre.

All of the speakers spoke to the need to better support adults with neurodevelopmental disabilities—and their families—at a much earlier stage.

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'It's nice to know we're not alone'

Photo by Rachel Friesen

By Louise Kinross

Rachel Martens is hosting a CP-Net webinar on Thurs. Feb. 8 from 12-1 p.m. called Finding Community: Social Media for Families of Children with Disabilities. Rachel, who lives in Calgary, is mom to Luke, 11, who has mosaic trisomy 22, cerebral palsy and autism. She is also a family engagement facilitator for CanChild’s Facebook group Parents Partnering in Research. I met Rachel at a conference and she is a wealth of information on how to use social media to connect with families, advocate on disability issues, and share practical and emotional parenting support.

BLOOM: What are the benefits of social media for parents of children with disabilities?

Rachel Martens: I spent time on Twitter the other night on a healthcare leader chat, and they were talking about the role social media plays in mental health. They weren’t talking specifically about disability, but I think what they said was just as insightful for families like ours. Social media is a way to find community and find health information. It brings more people into your world, and gives you another tool to work with, in tandem with your clinical team.

It’s nice to know we’re not alone, especially in the rare disease community. This society doesn’t have a dialogue for struggle, and if your life doesn’t fall into the norm, it’s nice to have people who are experiencing the same thing. It’s a community where you can share the small and big victories.

Writer Brené Brown talks about how storytelling is ‘data with a soul.’ I can mentor fellow Facebook friends who have children with a similar diagnosis, and I can also look at the victories other parents have, and that gives me hope for my kid.

BLOOM: How has your personal journey with Luke been impacted by your participation on social media?

Rachel Martens: My son was born just before social media started taking off. When I first got a diagnosis, I didn’t even know what a ‘chromosomal rearrangement’ was. I had to go off to Google to see what that meant.

But beyond that,I leaned heavily on the Internet. I found a forum another mom had created at Yahoo News Groups. Then, when Facebook got going, all of those families went over to Facebook.

I got adopted into that community and we watched each other’s kids grow, and talked about challenges we were facing. At the time, there was no model for transitioning into being a parent of a child with a disability. Social media shortened the gap.

BLOOM: For a parent who isn’t active on Facebook, how would they start?

Rachel Martens: There are groups for a wide range of disabilities and groups that are more specific. Different groups feed you in different ways. I would suggest doing a search with the words ‘disability’ and your local region—so I would put in ‘Calgary.’ You’ll find local organizations and groups. You can also expand into reading people’s blogs. There’s one Facebook group that I randomly stumbled upon—called Mommies of Miracles—that is quite large.

BLOOM: I like that one too. What social media channels should parents start with?

Rachel Martens: When I mention Twitter to some parents I get the same reaction—they grimace. Perhaps it’s the idea of limiting your characters. But if you’re trying to tear down walls with advocacy, I’d jump right into Twitter. Many institutions and healthcare organizations have their own social circle on Twitter, and they’re very welcoming to hearing parent voices as well.

BLOOM: What about Facebook?

Rachel Martens: Facebook is a good place to find private corners where you can be vulnerable and share your fears. Many Facebook groups are private, and that’s where I’d start. It’s a place where you can bare your soul with people who understand. While Twitter is great for advocacy, you can get more practical information on Facebook.

BLOOM: Do you have any words of caution for parents?

Rachel Martens: It’s important to remember that you may have to do some searching to find a community that feeds you in the right way. You’re not married to any group. If you join a group and it doesn’t feel right, drop it and keep searching. Also, when you come across health information, it’s good to bring it back to your care team, to make sure you totally understand it.

I encourage parents to ask themselves ‘What do I want?’ from Facebook. Who do you want in that environment around you? Then adjust your privacy settings accordingly. It’s good to know, too, that Facebook just put out an option where you can take a break from seeing a person’s posts for a week or so.

I think you also want to do some self-checks, to make sure you’re not avoiding things you could be doing in the outside world, beyond your phone.

And you may want to stay away from certain content that could trigger you in a negative way. So, for example, I belong to a pediatric hospital group, and sometimes I learn about children who have passed away. That could be very triggering for some people, so you need to set healthy boundaries.

Social media is just one piece of the mental health and information exchange puzzle. Make sure you have other sources—like books or counselling—to feed your soul.

BLOOM: Can you describe the Parents Partnering in Research Facebook group you belong to that’s run by CanChild?

Rachel Martens: It’s a Canadian community of about 150 parents and professionals that talk about different aspects of disability-related parenting. The original intent was to bring parents and researchers together so they could work to socially understand each other. Due to the time limits of clinics, there are often knowledge gaps where you can only get so much of a parent’s story.

Parents and researchers both tell us ‘Wow, I understand what you do, or what you go through, a whole lot more after spending time here.’ It’s a great way for parents and researchers to brainstorm ideas.

BLOOM: Who is the group open to?

Rachel Martens: Canadian parents. We also have some researchers from other countries—like Holland and Australia.

To find out more about Parents Partnering in Research, e-mail Rachel at lukesbloggermom@hotmail.ca and put "Bloom article" in the subject.

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