Today we met a real, live tooth fairy

By Louise Kinross

I wanted to share a quick personal story.

My son was seen in dentistry for years at Holland Bloorview and SickKids. He has some problems with his teeth related to his syndrome and has had work done in the office and under general anesthetic. We always had good experiences. 

Then we were transitioned to an adult clinic and every visit became torture.

My son has an unusually small mouth. He can't open it wide and it's difficult to get under his lips to clean his teeth. His teeth are also highly sensitive.

My husband came back from a couple of visits to the adult clinic shell shocked. There was nothing to distract my son during a cleaning. My husband was asked to physically hold my son's arms down while the dentist cleaned his teeth. My son would comply for a few minutes, then begin resisting. My son always left these visits complaining of mouth pain, no doubt because a sharp instrument had struck his gums at some point during these tousles.

I finally attended a visit, and I left shaking. The approach seemed to be that my son's teeth would be cleaned, no matter how upset he was. The more upset my son was, the more forcefully we needed to restrain him. I asked if he could be sedated, but the dentist said he didn't believe in that. The dentist was a very kind person, but this approach didn't work for us.

Recently I reached out to the head of Holland Bloorview's dentistry to ask if he could recommend someone else. He suggested a pediatric dentist he'd trained. She sees many children with disabilities.

I called and explained how challenging it was to have my son's teeth cleaned. The receptionist told me the dentist would look at his teeth, but if he was anxious, they would gradually expose him, over multiple visits, to different steps of the cleaning.  

Today was his first visit. A dental hygienist called my son in. He got in her chair and she reclined it so he could watch a show on the TV mounted on the ceiling.

She began slowly, just looking at his teeth with her mirror. Then, for 45 minutes, she scraped, flossed, polished with one of those ticklish electric brushes, and then painted fluoride on. A couple of times my son asked if she could stop. She did. But then we'd convince him to keep going. He wasn't happy, but he could handle it. He even enjoyed wearing the sunglasses. At no time was my son restrained.

After that, my son let the dentist come in and examine his teeth. The people were so gentle, so patient, so calm. They were respectful, and had strategies that didn't involve physically holding a patient down.

I was so grateful, knowing that this would be how my son's teeth would be cared for in future. My son left the appointment happy.

Read More

Lisa Boivin paints stories about medical ethics beyond words

By Louise Kinross

Lisa Boivin is a member of the Deninu K'ue First Nation in the Northwest Territories. She paints image-based stories that explore the gap between medical and land-based, Dene ethics. She is a bioethics specialist and graduate student at the Rehabilitation Sciences Institute at U of T's Faculty of Medicine.

“Academics often want you to give an absolute, sweeping bioethical answer that fits into all circumstances, but there are certain land-based ethics that can’t be held in academic language,” she says. “So I translate them through painting. I situate my Dene experience and perspective in the paintings, and then I extract the story.”

Lisa is presenting the Town Hall session at the 12th Annual Bloorview Research Institute Symposium on Nov. 21. Her image above is called Holding Thunderbird.

BLOOM: Why did you study bioethics as an undergrad?

Lisa Boivin: I fell in love with the element of story—that ethics are held in the story of clinical narratives. As a bioethics student, we have all of this academic rhetoric around ethics. But I learned that the ethics are anchored in the story of the patient.

BLOOM: You mean that the most important ethics are found in a patient perspective?

Lisa Boivin: Yes. Clinical and personal hardship helped me to see ethics differently—things like informed consent. I had to read a lot of patient narratives to have a fundamental understanding of the sacred ceremony of informed consent.

BLOOM: What is the sacred ceremony of informed consent?

Lisa Boivin: It’s both parties coming together with complete understanding of one another’s situation, and a balance in decision-making. That’s something that’s hard to accomplish, for basic reasons. The patient isn’t a clinician, and doesn’t have the expertise that a doctor has in terms of the biology of what’s happening. But there’s also such a tremendous power imbalance between the two parties.

BLOOM: Can you describe your art?

Lisa Boivin: I came to know image-based storytelling through an inability to articulate academic thought from an Indigenous perspective. I’m not a classically-trained artist. I’ve only painted for three years. I’m a ‘60's scoop survivor from two generations of residential school survivors.

One of my professors asked me to write a paper on colonialism. I couldn’t do it. So I painted it. The paintings are born out of necessity, and are a way to communicate Indigenous perspectives to non-Indigenous colleagues. The one featured on the BRI symposium program is called Holding Thunderbird (see image above).

BLOOM: Can you describe what it means?

Lisa Boivin: From my teachings, Thunderbird is a very powerful being, the carrier of knowledge and the conduit between the creator and the people. Thunderbird is also the carrier of justice. With that responsibility comes great frustration.

I don't feel knowledgeable, I simply carry a knowledge that is unfolding in images I'm creating. I find myself frustrated often. Holding Thunderbird relates to me as a person who struggles in the academy.

BLOOM: In the academic world?

Lisa Boivin: Yes. The Thunderbird is me, and the woman holding Thunderbird is a professor. In the academy, I’m constantly expected to fit my Dene knowledge into a colonial format. That’s extremely oppressive and harmful to me.

BLOOM: Can you give an example?

Lisa Boivin: There are times when bioscience research clashes with Indigenous research methodologies.

BLOOM: And bioscience is always seen as supreme?

Lisa Boivin: Yes.

This painting was created to thank a professor who was helpful to me at a residency. The woman holding Thunderbird is the professor and all the flowers represent her knowledge. She’s keeping Thunderbird from flying away, and comforting Thunderbird.

She’s the first person that’s never asked me to change or do anything that would be harmful to the Indigenous knowledge in the images. That residency provided me with a healing, and a security I had never known.

For me, the painting represents the notion that we all have our own knowledge and our own knowledge systems. And for us to grow, we need support from people who have power in our lives. It can be a professor, a clinician, or a leader in our community. But the idea is someone holding space for us, as we are.

For this professor, I didn’t have to change or fit my knowledge into a colonial format. All I was expected to do was share my arts-based knowledge. I wasn’t sure if I was going to return to my academic program. And this was the reassurance I needed that I am knowledgeable, and that my knowledge has value.

BLOOM: This reminds me of how difficult it can be to talk about disability in a culture that doesn’t value it. It’s almost like I don’t have the words, sometimes, or I feel like I’m put on the defensive, in trying to convince people that there is value in a different way of living.

Lisa Boivin: This is the kind of damage that the medical model does to people with differences. What I’ve learned from my family is that an Indigenous perspective of wellness is much larger than the narrow perspective of the medical model. The medical model measures wellness as the absence of disease. From my Dene perspective, the measure of wellness is the ability to interact with the land.

My father had polio as an infant, and during his childhood he was seen as someone who was disabled. But when my father came home from residential school, he got on a dog sled. He became a champion dog racer and was no longer disabled. He didn’t consider himself disabled in any way. He just navigated the world differently.

I’m someone who has been diagnosed with a learning difference or cognitive disability. I have a different way of translating knowledge. I’m an image-based storyteller. There’s a reason I can’t interact with certain academic theories. The images came to life and were born out of necessity. If I could translate knowledge in an academic way, I would never have learned how to paint.

BLOOM: You said you only began painting three years ago?

Lisa Boivin: I had some artistic abilities as a child, but I stopped because I was bullied so much. I shrunk, and the art was gone.

I feel the beauty that is translated through my images comes from another place. It’s the ancestors coming through me. When I’m doing land-based activities, like anchoring bioethical theory or conceptions of wellness or rehabilitation in my painting, I’m no longer disabled. My mind is clear.

BLOOM: You spoke about your dad’s physical disability, and how through dog sledding, he was able. How do Indigenous people view intellectual disability or other types of disability?

Lisa Boivin: There are different Indigenous perspectives on disability and wellness. You’d have to take the time to research those. There is Navaho literature on autism and other intellectual disabilities.

Of course, any Indigenous person would want someone else to embrace a notion of wellness that will benefit them and their family.

Nothing would make me happier than if someone threw away the medical model that’s measuring who they are as a person.

Any Indigenous person would want people to embrace who they are, or to create their own idea of wellness. We have to snatch as much happiness as we can. My dad walked with a limp and had varying degrees of mobility, but that never affected his understanding of his wellness.

My wellness comes from an ability to interact with the land—to understand where I am in the world, and how I fit in and what my duties are. My duty is to be an image-based storyteller.

In the Navaho literature, they don’t present an idea of correcting behaviour. You are who you are, and you contribute where you can.

You move differently, you speak differently. The eight-year-old boy in me says: ‘You have a difference, you do different stuff.’

BLOOM: I love that. There’s no judgment in it.

Lisa Boivin: It really is that simple. Having a learning disability, my conception of disability in the past was that I was academically inferior. I had an inability to perform as well as other students.

An understanding of ‘doing different stuff’ has really helped me. In my graduate studies, I have come to know that my GPA is not an accurate measure of my knowledge. I don’t have great grades and my ideas are resisted constantly by my peers and many of my professors. But people seek me out to speak at their conferences and events.

In November, I'm keynoting The Ontario Psychiatric Outreach Program's conference and Woodsworth College's annual accessibility conference. I also did a centre talk and taught two arts-based workshops at St. Michael’s Hospital in the summer. That professional affirmation keeps me from giving in to the notion that I’m academically inferior to members of my cohort.

BLOOM: We did a narrative group for our inpatient nurses, and in addition to writing about their emotional experiences caring for children and families, they drew comics to help them see from different perspectives.

Lisa Boivin: In my arts-based workshop, I ask clinicians to create a visual narrative of themselves. Drawing yourself really expands the idea of practice. I ask them to draw who they are as an individual, how that influences their practice, what they want to contribute to their working community, and what they want to give to their patients. That’s a pretty big task to do in an hour! But it teaches people to be more reflective.

There’s something about drawing a piece of yourself where you have to capture a piece of your humanity. Within that humanity is vulnerability, but also an understanding of your responsibility as a clinician.

For me, I have my own image, and sometimes I have to go back to that image to remind myself to be better at what I do.

Being the frustrated Thunderbird that I am, there's a hawk feather in my self-portrait to remind me to speak gently and clearly. I also have a clipboard which represents consent. I’m always trying to build a place where clinicians can understand what consent it.

BLOOM: What do you hope to do in the future?

Lisa Boivin: I want to share information about Canada’s colonial history and how that creates clinical barriers between a clinician or therapist and a patient.

There are centuries of failed relationships between what would become Canadian institutions and Indigenous people. For hundreds of years, there’s broken promises, institutional racism and mistrust. And this still takes place in medicine today. I am horrified when I read stories in the media about Indigenous patients who die in ERs because they're seen as drunk or drug-seeking. When an Indigenous patient sees that in a media story, it influences how they interact with a doctor.

Medicine has also been used as an instrument to remove Indigenous children from their homes, because it's perceived that Indigenous parents can't look after their children. This was certainly the case for my father, who had over a dozen surgeries to correct his mobility impairment.

I’d like to promote an understanding of a wider notion of wellness. As we spoke of earlier, the medical model is very simplistic. It’s the presence or absence of disease. There are wider models of wellness.

For many Indigenous people, the ability to interact with the land is a measure of wellness. An Indigenous worldview includes the land, animals, community and nature. An ability to contribute to community is central to wellness, and that can be any contribution.

I’m a health-care educator and I will continue using arts-based practice to educate about colonialism and how that exists in medicine.

BLOOM: I think your ideas could be helpful to any patient, including non-Indigenous patients.

Lisa Boivin: Imposing a medical model—one standard or one measurement—on any group of people is really harmful.

For my first two years as an undergraduate student, I struggled. It wasn’t until I was able to understand certain concepts and put them into images that I was able to thrive.

Learn more about Lisa’s experience and insights in her Ted Talk: Painting the Path of Indigenous Resilience. In this video, she describes the image Sharing Bioethics below as the overlap between a traditional Dene circle of medicine and an academic circle of medicine. "We all hold circles of medicine," she says. The photo below is by Erin Howe at the University of Toronto.

Read More

It's 2017, and speech technology is still primitive

By Louise Kinross

I like our Dear Everybody campaign because the messages, like this one above, are real, and come from our children and families.

Most people assumes technology is an equalizer for people with disabilities, and in some cases it is.

But in the 20 years I’ve followed the use of voice devices, and more recently, voice apps that can be used on iPads, I’ve never seen a product that’s nimble, intuitive and fast.

In fact, you may have heard our Dear Everybody radio ad with Gavi, who uses a communication device. What you may not know is that Gavi had to pre-program her comments. She couldn’t express them live, because it isn’t possible to use a device at the speed people speak.

Indeed, “the process is often extraordinarily arduous and fatiguing for the person using the device,” writes McGill University scientist Gail Teachman in a study in Qualitative Inquiry this month.

Last week I had Marna-Rose Minett in my office. She’s raising her seven-year-old granddaughter Rayne, who has cerebral palsy. Marna-Rose noted that Rayne uses her communication device at school, but “we don’t use it much at home because we can understand her speech, and she has to go through so many different screens” to put words together on her device.

“It's slow,” Marna-Rose said. “If she wants something to eat, first she presses ‘I’ and ‘want’ on the first screen, then she picks the icon for ‘food,’ then within food she has to choose between ‘breakfast,’ ‘lunch,’ ‘dinner’ or ‘snack,’ then she chooses what she wants.’” 

I likened this cumbersome process to a person needing to look a word up in the dictionary every time they wanted to express it. “Can you imagine if you wanted to say a word, having to flip through a dictionary and find it first?” I said. “And then, when you're finished with that word, you have to look up the next one?”

We both laughed wildly. But it wasn't “ha ha” funny, it was sad and despairing.

There is an app on the market—Speak for Yourself—which tries to keep the number of clicks needed to find a word to two. That’s an improvement.

But anyone who uses mainstream business or consumer technology would gasp in horror if asked to play around with the setup, capabilities and speed of these speech apps and devices.

That’s why a high number of children and youth abandon them. 

Recently, I was struck by how many people are instead using using a letterboard and spelling out words, letter by letter, which are then spoken by a partner, to communicate.

That’s how Japanese author Naoki Higashida, who has autism and is largely non-verbal, wrote his two books: The Reason I Jump and Fall Down 7 Times, Get Up 8.

In ABC’s hit Speechless, actor Micah Fowler communicates by selecting letters to form words with a laser pointer attached to his glasses.

One of our clients spoke to me the other day by pointing to letters to form words on his letterboard, while I spoke the words to confirm accuracy.

Over the years, I’ve seen scientists study why children and youth abandon voice devices. And I’ve always thought: “Why wouldn’t they?”

“I keep hoping that Apple will develop a voice app or device that is as intuitive and user-friendly as its other products,” I wrote in a blog in 2014. “However, I’ve been hoping that for more than 15 years. I even began a small campaign of tweets to Apple CEO Tim Cook last year that went unanswered. I think the big computer makers have let our families down in not bringing their expertise to the AAC table.”

Why is it okay, in 2017, that people with limited speech have to endure an “extraordinarily arduous and fatiguing process” as their only option for self-expression?

If current technology was sophisticated and speedy, why would a famous author choose to write his books by pointing to letters on a letterboard?

Why would my son prefer to use sign language, even though it drastically restricts who he can communicate with?

I have an idea for a scientist. I want a researcher to use a voice device for one week—24 hours a day—and not use the keyboard, because many young kids using devices can’t spell. Then, write a paper about how “easy” or “hard” it is to use, and how it compares to an Apple device.

I e-mailed my idea to scientist Gail Teachman, and this is how she responded: “I think a really important aspect of that researcher’s learning would be that NOT ONLY are devices slow, hard to use and clunky, but using an AAC device can be stigmatizing. The researcher would very likely experience social interactions where suddenly they are not seen as an expert, not smart…”

There would be “lots of being spoken to ‘like a child’ and an absence of the respect they are used to receiving from listeners. In short, what they have to say would suddenly be judged less valuable, less worthy of another person’s attention, less important and therefore, not worth the time it takes to listen.”

Why is that experience acceptable for children who struggle to speak?

Years ago, I spoke to the head of our research department about applying for one of Bill Gates’ Grand Challenges grants to develop an intuitive voice device. But the grant needed to create a life-changing solution for large markets of people around the world

The number of people using voice technology is relatively small. But it still makes zero sense to me why Apple or Microsoft wouldn’t choose to enter the market for the goodwill they would generate alone. The media stories generated would be solid gold.

Gail Teachman is a postdoctoral fellow at McGill University with the Views on Interdisciplinary Childhood Ethics team. Her research examines the moral experiences of children—their views on what it right and wrong, good and bad, and just and unjust—particularly in the context of childhood disability. 

Read More

Parenting as a grandmother: 'You're so much wiser'

By Louise Kinross

At age 63, Marna-Rose Minett has raised two children.

Now she’s raising a third—her granddaughter Rayne, 7, who has cerebral palsy and lives with Marna-Rose and her husband Wayne.

Preparations are already underway for Halloween.

“Rayne loves dressing up in costumes,” says Marna-Rose, pulling up a picture on her phone of Rayne posing as “super girl.”

“This is a costume I originally made for my daughter,” she says, pointing to Rayne in a spotted leopard suit. “Rayne loves music and dancing. She has her own keyboard and two play guitars. She’s trying to talk me into riding lessons,” Marna-Rose says, looking at a photo of Rayne atop a pony. “She’s bright and sunny and personable. She charms a room. She’s really positive, and also very tenacious, when she wants to do something. She makes friends and she wants to be with people and do things.”

Marna-Rose became Rayne’s primary caregiver when Rayne was 18 months old. Rayne’s mother is very involved in her life, but needed to work on her addiction issues.

“You’re so much wiser,” Marna-Rose says, comparing parenting at this stage in her life to when her own children were young. “Things that would have made my husband and I crazy with our own kids are minor bumps in the road with Rayne. You have that perspective.”

While in some ways their parenting style is more laid back, Marna-Rose says they’ve been very hands-on with Rayne’s physiotherapy. “We realized how incredibly important that was for her over the long term, so we worked really hard on that. Maybe if we were younger we would have let that slack a bit.”

Rayne has stiff muscles, but “walks, runs, dances and skips,” Marna-Rose says. Her speech is delayed, and while her grandparents understand her at home, Rayne uses a communication device at school. She graduated last year from Grade 1 in the Bloorview School and is now in a contained Grade 2 class in a neighbourhood school. “We appreciate her milestones more,” Marna-Rose says. “I don’t know if it’s because she’s our granddaughter, or because of her disability.”

When Rayne was born, disability was not new to Marna-Rose. She had studied kinesiology and worked in group homes, including managing one for adults with cerebral palsy. She was also executive director of a program that offered respite to parents of children with severe disabilities.

“Oh good, I can handle this," Marna-Rose recalls thinking, when the doctor said Rayne had cerebral palsy. “That was my first thought.”

Marna-Rose says the biggest challenge of parenting as a grandparent is physical exhaustion. “I have a bad back, and I was already an older mom once, when I had my own kids. I really notice how I don’t have as much physical energy and strength. You get down on the floor, and it’s hard to get back up. If Rayne needed soothing I was sitting in a chair somewhere, I couldn’t carry her. It’s parenting with an aging body.” 

As a grandparent, Marna-Rose says she hasn't had to deal with any feelings of guilt about Rayne's disability. “I know that can get in the way for some parents.”

Advocacy comes more easily at this stage in her life, she says. “My son is gifted and I was used to advocating for him. Being a grandparent, I think I’m a little more reasoned with my advocacy. I’ve had experience dealing with the school system. I can step back a bit, and I have the words. I need more sleep, but I have better words!”

Marna-Rose and her husband investigated a support group for grandparents raising their grandchildren, but “decided we didn’t need it. Our support group of friends, even though we’re all older, is strong, our family was very supportive, and the Bloorview School was fabulous. Our daughter is still there 100 per cent for Rayne.”

Marna-Rose works full-time as an administrator and she and her husband find yoga a great way to re-energize. “One piece of advice I would give to other grandparents raising a grandchild is ‘Remember, you know how to do this. You can manage.’ Because they do. They’ve already raised their own kids, so they have the life experience to have their grandbaby full-time. Use your friends for support.”

Read More

Six years later, a mom embraces life with her son's brain injury

By D. Brown

Wow! How time flies! Another “back to school” season is upon us. Six years ago, our healthy two-year-old son was hospitalized after suffering seizures and then severe brain inflammation. Since that fateful day, we have watched our son suffer and heal, struggle and overcome, falter and thrive.

Today, our son is firmly settled at his school where there aren't any grades. I know that he “would” be in Grade 3, if he hadn’t had his life-threatening illness. Instead, it's our seventh year raising a toddler. And when I see the young boys playing organized baseball at the local park, my heart does ache.

Despite the sadness around what would have been, what's new about this anniversary is that I no longer feel victimized by what happened. This year, there’s an acceptance around our family's reality and the sense of responsibility that comes with it.

Despite the fact that we have willingly sacrificed ourselves every minute of every day for our son's wellbeing, and are exhausted and worn, I now embrace this reality rather than feel sorry for ourselves.

I don't cower with embarrassment or feel the need to explain our situation when our son is loud and excited in public. I smile at him and comment about what he is experiencing, excited right along with him.

I no longer feel burdened by changing the sheets every few days with overnight diaper leaks. Instead, I'm thrilled that our son is daytime toilet-trained since February.

I don't feel slighted because he’s not neurotypical like other kids. I am enthusiastic about his unique unfolding of growth and development that continues to amaze us.

How did I get here? I think it's a combination of a few things.

Our son has continued to show steady gains in his recovery and development and time has given us practice at our new reality.

I don't really think about what “would have been,” because it's as irrelevant as what life would be like if I were born male, or in 1823, or if our son were a daughter. It didn't happen that way, so who cares?

After our son’s brain injury he was diagnosed with autism. We’ve embraced the Developmental, Individual differences, Relationship-based (DIR) model, or DIR/Floortime as the approach within which to support our son's growth. This is a developmental, rather than a behavioural, approach. DIR/Floortime is a lifelong model that encourages independence, relating, communicating, thinking, and the pursuit of a meaningful personal journey.

This too has given us a framework for acceptance because we can now be patient with our son's own developmental trajectory.

Sure, I still feel sad that our son will never have the kind of school memories that we did, that he hasn't started academics yet, doesn't know how to colour or read, can't write his name or dress himself, nor understand how to count objects.

But for the first time, I'm also okay with it because it will probably all come in time. If it doesn't, he's already perfect as he is, if I just open my eyes and see who is before me, instead of comparing him to a child I might have imagined.

After six years, I've come to own our reality. Our family tragedy called upon us to be there for our son in ways we might not have otherwise been able to.

For example, without our son’s illness, I would have been back at work much earlier, rather than staying home to care for him full-time. Being at home during the day since he started school gave me the time to fulfill the hobbies that kept me sane, and gave me the gift of getting to know our son to the point of experiencing the world from his perspective, to the best of my ability. With that empathy, I have been able to help him flourish.

He feels safe in this world with us. He is loved and treasured. His wellbeing is always taken into account first and foremost. Every day, I wake up happy to have our son with us and to be his mother, because I know that we can take nothing for granted.

I do feel angry, sad, scared, sorry and tired from time to time, but these moments are now fleeting, because I have the confidence that I understand our son, and I know how to support and guide him through his development.

This is different from how I felt in the early days, when I was scared and desperate to find the right therapy for him, or felt pressured to teach him skills that professionals thought he should know. I became disillusioned with the pressure to make him “school ready,” when I was only concerned with his wellbeing and development.

Mostly, I feel joyful, grateful, proud, hopeful, and eager. I've earned this because of the joy I sense in him and see on our son's face every day.

Our family, through my dedication, have collectively given our son a life where he can be himself and is happy. What more could we ever want?

You can follow this family on their blog.

Read More

A social worker who's lived the other side of rehab

'They tell me that it's different working with me'

By Louise Kinross

Gabriella Carafa is a social worker whose connection to Holland Bloorview goes back to her childhood, when she visited our neuromuscular clinic. Eleven years ago, Gabriella participated in Holland Bloorview’s The Independence Program, living for three weeks in a university residence to learn a variety of life skills. Since then, she’s worked as a youth facilitator at The Independence Program and at our Youth Weekend Retreat.

Three years ago she came on board as a social worker in our child development program, working with work with youth with cerebral palsy, spina bifida, spinal-cord injury, craniofacial differences and complex medical needs. She also provides social work support to young adults in The Independence Program.

BLOOM: What drew you into this field?

Gabriella Carafa: I wanted to be a social worker because I’ve always been interested in people’s emotions and supporting them to cope with their life experiences. I thought I could contribute greatly to working in children’s rehab because of my rich lived experience, in combination with my clinical skills.

My clients say it best when they tell me that I understand things and they don’t feel like they need to explain as much to me. They don’t have to explain about the frustrations around accessibility, or how hard it is to go out with your friends, because I understand. They tell me that it’s different working with me.

BLOOM: What are some of the common issues they bring to you?

Gabriella Carafa: The common issues are around acceptance of disability and self-esteem. Anxiety is a huge one and depressive symptoms, even if they don’t have a formal diagnosis. As they’re getting older, they recognize more things that they can’t participate in in the same way as their peers.

BLOOM: Do they also recognize the stigma of disability more?

Gabriella Carafa: Yes. If it’s not overt, it may be that they’re not invited to parties, because people assume they can’t go up the stairs, for example.

It’s not one of these things, but a combination of them: dealing with anxiety and depression and feeling like they don’t fit in or it’s hard to fit in.

BLOOM: What is the greatest challenge of your job?

Gabriella Carafa: My greatest challenge is supporting youth with complex medical and cognitive disabilities in their transition to adult services. In the adult realm, there are long wait lists for services and funding. For families who maybe had funding in the children’s system for respite—that ends at age 18.

Sometimes I feel helpless. I try to make families aware of all of the funding changes as soon as possible, and look at ways they can manage by increasing their support network and connecting with other families to advocate for system change.

BLOOM: What do you love about your job?

Gabriella Carafa: So many things. I think social work is a privileged profession. I’m a big believer in being vulnerable and being real, and in social work most of the time you see people at their most vulnerable, when they’re going through a tough time. I get to witness the strength of clients and families.

I ask those questions that other professions may not be asking, like ‘How are you coping?’ or “What has the impact of the diagnosis been on you and your family?”

You’re normalizing feelings they may not want to admit to other people.

Parents may be ashamed that they’re not coping well, and you create that space where they can just be honest without guilt or fear of judgment.

BLOOM: How do you cope with some of the emotions that come with your work?

Gabriella Carafa: I am working on not taking the work home. That doesn’t mean I don’t care. Making sure you have activities you do outside work that you enjoy is important. I also have a lot of social worker friends—some here and others not—and we can lean on each other for support.

What’s hard is when families think I should do more to change all the systems in adult services. When families want me to do more than I can, it’s hard on me.

I feel proud that I do this work and I feel I make a difference by creating a safe space and providing families with the information they need. They feel they have someone in their corner.

BLOOM: I know you also supervise social work students.

Gabriella Carafa: I hope social workers coming into the field have a better understanding of disability, and I work hard to provide that both as a social worker and as a person with a disability. I can educate future social workers around disability and the stigma that comes with it. I support them to develop an anti-ableist practice.

BLOOM: You said your understanding of independence has changed since you went to The Independence Program as a client.

Gabriella Carafa: I recognize that our traditional ideas about independence aren’t possible for every client, so why are we thinking about independence this way? With medical advances, a lot of youth with complex needs are living longer.

Until I began working as a social worker here, I didn’t have a thorough understanding of the wide variety of disabilities our clients have. Most of the youth I work with have complex needs. Many won’t go to post-secondary education, move out on their own, get a job, or volunteer, and that’s okay.

Even the people who are going to The Independence Program have changed. We have more people with cognitive, rather than just physical, needs. These are individuals who may never live independently in the traditional sense. But that doesn’t mean they can’t build skills and recognize when they need support.

BLOOM: I was speaking with a colleague whose family is from Ethiopia. She said our obsession with ‘independence’ as the end goal of life is hard for them to understand.

Gabriella Carafa: Western ideas of independence are not reflected in many of the cultures we serve here. And whether or not you have a disability, people are living with their parents, spouses, children and grandparents, and the families are interwoven and interdependent. Why is that a bad thing?

On the other hand, we do have situations where the youth wants to be independent, but culturally the family doesn’t believe in that. They don’t want their child to move out.

Some parents experience grief when they realize traditional independence may not be possible for their child. However, that doesn’t mean there aren’t other possibilities for having a great life as an adult. That’s why we need to continue having transparent conversations with our clients and families that explore what is possible.

BLOOM: If you could change one thing in the health system, what would it be?

Gabriella Carafa: Adult services as a whole. I think we do a really good job in the children’s system, and adult services need to reflect that. I wish the adult systems were better connected and that adults with disabilities had more funding available to them. And I wish the systems reflected people with diverse identities and needs. Ha—that’s a lot!

BLOOM: What have you learned from families?

Gabriella Carafa: That they’re resilient. That’s what I’ve learned.

Read More

Hotel helps kids with autism feel at home

By Louise Kinross

A small Newfoundland coastal town is home to Canada’s first autism-friendly hotel.

Hotel Port aux Basques offers a fully-equipped sensory room (above), bedrooms with extra security features for kids who wander, a visual kids menu and a social story with pictures and text that parents can share with children in advance so they know what to expect.

Owner Cathy Lomond says the idea came from local teacher Joan Chaisson. “She’d organized a group of parents and one of their biggest concerns was how difficult it is to travel with children with autism and special needs.”

Cathy offered the group—called Autism Involves Me—a spare room and the group raised money to furnish a sensory and quieting room.

“There’s a blue swing called a crow’s nest that holds a child cocoon-like, a peapod-shaped boat they can climb in and rock, little hand grips if they want to climb the wall, or bouncy bags if they want to blow off steam,” Cathy says. The room has special mats and a seaside mural painted by a local artist.

Recently, a family arrived for dinner after a seven-hour drive across Newfoundland. Their autistic daughter was distraught.

“The child was very emotional and screaming and it would have been impossible for them to eat in the restaurant,” Cathy recalls. “But by going into the sensory room first, the child relaxed into a quiet mode. The mother couldn’t say enough about what it meant to be able to go and enjoy their dinner.”

The hotel also has four autism-friendly bedrooms. The doors are equipped with high door chains for children who wander. Inside, the TV and pictures are mounted to the walls and there are locks on drawers if parents want to keep appliances like a coffee maker out of reach. The adapted rooms are priced on par with regular rooms and Cathy says they plan to increase them to 14.

“Before people come, we send them questions about how we can help with their specific needs,” Cathy says. For example, “if you need to go into our kitchen to prepare your child’s meal, you can do that. It’s all about satisfying people’s needs. We want to do the warm and fuzzy things that people remember when they travel.”

After creating the sensory room and adapted bedrooms, Cathy brought in an expert to educate front-line staff about autism.

“When our sports complex heard we were doing the training, they asked if they could send eight of their people down, because they wanted to adapt some of their classes for children with autism. So we did two trainings.”

Port aux Basques has been designated an autism-friendly community because a grocery store, hairdresser and other services have followed the hotel’s lead.

Cathy, who first worked at the hotel as a teenager, bought the property 19 years ago. Joan, the teacher who spearheaded the project to adapt the hotel, once taught Cathy's sister Sherry, who has Down syndrome.

Cathy now chairs Newfoundland’s tourism quality assurance board. “When our inspectors go to do inspections, they will be asking ‘Do you want information on how to be autism-friendly?’” Cathy says adapting bedrooms is not expensive.

“It’s nothing new, because we’ve made things wheelchair accessible and accessible for vision impairment. This is the next step, given the growing number of children who have autism.”

Success “is all about the little things,” Cathy says.

Read More