Wednesday, November 15, 2017

Self-compassion may fuel parent resiliency

By Louise Kinross

Greater self-compassion was related to less stress and depression in parents of adults with developmental disabilities, according to a study in the Journal of Applied Research in Intellectual Disabilities.

The findings are based on self-report measures of 56 Toronto parents who attended one of two six-week groups as their children waited for services after leaving high 
school. One was a mindfulness group where they were taught to pay attention to their feelings and thoughts in an accepting, non-judgmental way. The other was a group providing information and support on getting services, many of which are wait-listed. One-quarter of the adult children didn't have anything to do weekdays.

The paper defines self-compassion as “being touched by and open to one’s own suffering, not avoiding or disconnecting from it,” and “generating the desire to alleviate one’s suffering and to heal oneself with kindness.”

The two parent groups didn’t focus specifically on self-compassion, but the mindfulness group included learning how to do a loving kindness meditation that begins with a focus on the self.

The current study found self-compassion was negatively correlated with depression and stress—even after controlling for parents’ perceived caregiving burden; for parents of children with autism, who sometimes have more stress and depression than parents of children with other developmental disabilities; and for neighbourhood income.

“Self-compassion is something that matters and that we need to pay more attention to,” says investigator Dr. Yona Lunsky, a senior scientist at CAMH who partnered with Developmental Services Ontario and Community Living Toronto to run the groups. “Parents are very compassionate when it comes to their own kids, but do they have that same compassion for themselves?

“Often, these parents feel inadequate. Why do they feel inadequate? Because of all of the things they’re supposed to be doing to make sure their child is okay. Sometimes those things work, and sometimes they don’t, and sometimes that’s hard on parents. They may experience inner psychic pain, or the pain of the child or spouse or other siblings.”

Parents’ first reaction may be to dismiss that discomfort. “We don’t have time and we’re scared to look at what’s going on in ourselves—that we are suffering. We think ‘If I’m going to be strong, I won’t pay attention to that, and I’ll keep going.’ But if we’re disconnecting and pretending it’s not there, we’ll never relieve that suffering, and our approach will eventually be harmful.”

Yona likens it to an athlete who continues running on an injured knee. “You have to notice what’s going on when you’re in pain, so you can treat it with gentleness and love and care.”

Parents often feel an automatic sense of compassion for their child, but don’t extend the same kindness to themselves. “Maybe instead of berating yourself because you did something wrong, you can forgive yourself, or notice how you’re experiencing it, or just be gentle. It’s about gentleness.”

Yona notes that there’s a body of literature on self-compassion in the general population, but work looking at its role in parenting children with disabilities is early and emerging.

“We had a sense of self-compassion's importance for parents from past research, but this is the first study to demonstrate its association with mental health for parents of adults with developmental disabilities," says Suzanne Robinson, a graduate student at York University who was lead author and analyzed the data for the study. Suzanne is doing her PhD in clinical developmental psychology and worked as a summer research student at Holland Bloorview in 2010.

Yona says future research could look at understanding why some parents of children with disabilities are more self-compassionate than others, and how to foster self-compassion in this population.

You can contact Yona at

Friday, November 10, 2017

'We just fell in love with her at first sight'

Catherine and Trish Emmons and daughter Priscilla, 3, are the focus of our new A Family Like Mine video.

Priscilla, known as Cilla, was born dependent on drugs to a mother who couldn't care for her. She spent her first month in the neonatal intensive care unit in pain, on morphine, inconsolable. At nine months, Trish and Catherine adopted her.

"When we first brought her home, we noticed that she would have huge temper tantrums when we would leave her," Catherine recalls. "And I don't mean by leaving the house. I mean she would be in the living room and we'd get up to get a cup of coffee and she would start having a temper tantrum because she was so distraught that you were going to leave her. Because a lot of people don't realize that kids, babies, suffer loss. They think 'Oh, they don't remember.' But at that point she'd already suffered from two major losses. One from her birth mom, and one from her foster mom."

This is a remarkable family with great insights on parenting, adoption and celebrating differences. Thank you to social worker Barb Germon for suggesting them.

A Family Like Mine is a video series about diverse families raising children with disabilities. It's incorporated into the curriculum for second and third year medical students at the University of Toronto.

Monday, November 6, 2017

Stares at the mall

Many of you know Sue Robins as the author behind The invisible mom, one of our most read posts about social isolation among families of children with disabilities. Sue recently took a poetry class and wrote this piece, which she says is fiction, based on her experiences raising her son with Down syndrome, and stories other families like hers have shared with her. Louise

Stares at the mall

By Sue Robins

Always the caboose
He’s minding the gap
At the back of the line.

Invisible but visible
Is a puzzling way to be
Stared at, all but ignored.

How old is he
The nurse asks his mom
He’s standing right there
A teenager, not a ghost.

I hate my face
He announces one hot July day
Sits on the bench, arms crossed, opting out of the moments.

I was asked
Many times by other moms
Do people stare at you in the mall?
Why yes, yes they do.

First they stare at my boy.
Then they stare at me.
They finish up by staring at my boy again. 

I see their heads turn
To and fro
As if we are a tennis match.
Marked by pity, not love.

This is how you stop making eye contact
Begin walking with your head down
And don’t leave the house.

We are not contagious we cry
But nobody hears us.
Instead they shush us to be quiet
And demand that he inspires them.

Our circle becomes smaller and smaller
Until we collapse into the tiny dot of our four walls
Passing the time by gently and together
Placing a fence of sticks
Against our respective hearts.

Thursday, November 2, 2017

Finding the music in everyone

By Louise Kinross

The other day I posted a call for story ideas on the BLOOM Facebook page.

Karen Bojti wrote: “Another ‘out of the box’ person I have discovered is Laura Nadine. You can Google her. She’s a professional violinist, a wandering minstrel and music teacher. She is also a woman on the autism spectrum. She is teaching Charlie to play the violin.”

I hopped over to Enlightened Audio, which is Laura’s website, and this sentence jumped out at me: “I teach music to all humans.”

It sounds like common sense, but it’s revolutionary. Many children with disabilities struggle to find a music program they can attend, let alone flourish in.

Laura lives in Buffalo, but she travels to Toronto on weekends to teach here, so she came to visit me.

Laura primarily teaches string instruments, but she also teaches piano and guitar at a beginner level.

“The key ingredient to my teaching approach is presuming competence,” Laura says. “I truly believe every student can learn. We just may need to adjust the method or the way in which the student connects with me. I want to make it clear that I’m not a music therapist. I’m teaching children to acquire the skill of playing the instrument, and when they’re finished, these students are playing core material like everyone else.”

Laura says about 80 per cent of her students have disabilities. Most have autism, but she’s also worked with children with cerebral palsy, Down syndrome and ADHD.

“One of the things I think is flawed in understanding disability is that we think disability is static: when you’re assigned a certain IQ, that’s what it is. We don’t take into consideration the error of the measurement systems, and that kids are fluid. They can grow and learn more. I’ve seen this time and time again with autistic children going from being non-verbal to communicating with a letter board. We’ve got testing models that assume all humans fit into a static model. We really don’t understand the grey area of the spectrum, and the ability to make new [neural] connections to compensate for places where there might be flaws.”

When working with a new student, Laura encourages them to make a sound with the violin. “Their bow hold might not be perfect, but making a sound is rewarding,” she says. “I let the child take the lead. If the child is afraid to touch the instrument, we unpack it and look at it, and I talk about how it only makes sound when the child wants it to make sound.”

For a child with autism who has trouble getting her body to do what her brain wants, she'll take the child’s arm and help her bow up and down.

For some children with autism, touching the violin to their shoulder and resting a chin on it “can feel like lightning shocks going through the body,” Laura says. “The goal is to get it on their shoulder as soon as possible, so they can train their own body to tolerate the input. However, if I have to hold the violin first to get to that step, then I do that. I would face the student and say ‘I know your brain understands what you need to do, but your body needs time to learn.’”

The good news is that “the body and brain have an amazing ability to increase tolerance to input, so people on the spectrum can learn to be a little less sensitive through training and understanding. The more times we do something, the less intense those shocks will feel, until they can independently hold the instrument.”

Laura struggled in school growing up because her autism wasn’t diagnosed. “The hardest thing for me is my nervous system,” she says. “I went to public school in the states, and they had no windows in the classroom and fluorescent, vibrating lights. It was hard to be in this building with all this input. There were bells ringing and kids chewing on pencils. I could even hear the clocks tick and the water fountain pump turn on. I had meltdowns that weren’t physical—where I would shut down and couldn’t speak. It manifested in night terrors. My teachers thought I was sick. I dropped out of high school in Grade 10 and did correspondence school.”

Laura says that during her struggles at school, “music was my island of increased ability.” Within four years she was playing at a professional level, and was asked to tutor other music students after school.

Laura says she may have synesthesia, where “one sense gets confused with another. In my case, my vision has a sound. What I see creates music in my head. When I was in music class at school, I would pick up snippets of sounds throughout the day, then organize them into a song to play on my violin. It was an outlet for stress. I called these songs shadow songs, and one of the first I wrote was called All Alone. I wrote it at age 14. I call them shadow songs because everything has a shadow, but for me, everything has a song.”

It wasn’t until Laura was 27 that she learned she had autism. “My second child Jacob was doing some odd things that reminded me of myself,” she recalls. “He had to have things organized in a very special way, and he wasn’t speaking fully until right before he went to kindergarten. I took him to the doctor and he gave us the diagnosis of autism spectrum disorder. Then, while talking to me about Jacob, he handed me some literature about adults on the spectrum. I guess I was obvious.”

Laura says getting the diagnosis was freeing. “It was like someone wiped the fog off my vision. The diagnosis is a toolbox, not a label. It told me what set of tools I needed to adapt to succeed in the world, not just survive. Nobody wants to just survive. People want to have a quality of life and I knew I wanted to be more.”

She went to college to study psychology and education. “With a diagnosis, I was able to ask for help with note-takers and extended time on tests, and I went from being a failing student to having a high GPA.” Laura says she wanted to understand better how her mind worked. “I felt many of the interventions for autism were obedience-based, not development-based, and I wanted to understand more so I could do more.”

Laura says what she’s learned from her students is that “there’s always a way, even when it feels like we’re pressed up against a wall and not making any progress. I’ll wait for the student to shine a light on something else that ends up working for us. That’s part of being student-led. I’m not trying to fix the student. I’m teaching them to navigate through their disability.”

Laura receives lots of positive feedback from her students and their teachers. “One girl who uses a letter board told me that music changed her life, and was a new way for her to communicate her inner thoughts.”

Laura hopes to move to Toronto in the New Year and become a Canadian citizen. “When I came to Toronto, it was the first time ever that I felt like I was at home. The community here is so warm and embraces unique perspectives. I can’t wait to be a part of that society on a daily basis.”

Laura has a book: I am Snamuh: My Journey with Autism and the Power it Gave Me. She also has a few signed copies for anyone interested.

Tuesday, October 31, 2017

'Trust your instincts. That's what I tell parents'

By Louise Kinross

Fahima Afroze is a biomedical engineer with three daughters. Myreen, 11, has autism and Zafreen, 8, has cerebral palsy.

When Farzeen, now 4, was hospitalized at six months old, Fahima knew her way around the health system.

“They thought Farzeen had a bone infection, but she kept getting other infections,” Fahima recalls. “She caught hand, foot and mouth disease, and had yeast infections in her tongue. They brushed it off and said ‘she’s a kid,’ but my other kids weren’t that susceptible. I kept asking if we could call someone to look at her immune system, and they looked at me like I was the ‘crazy mom.’ One day a doctor left her medical record in the room by mistake, and I read it. I saw her neutrophils dipping to a dangerous level. Neutrophils are a component of the white blood cells. Without them, you have a suppressed immune system. When I showed the doctor, his eyes widened and he paged hematology and the cancer clinic. They gave us the diagnosis of Neutropenia, which is the body’s inability to make neutrophils. I knew something was wrong with her immune system! I had a maternal instinct about my child, and I was collaborating. But they were renowned specialists thinking ‘she can’t teach us our job.’ Trust your instincts. That's what I tell parents.”

With three daughters and three diagnoses, Fahima juggles over 300 medical appointments each year. “If they had the same thing, I could take them to the same appointments,” she says, but each child sees different specialists. Because she can never be certain about the length of visits, “I often have to drag the other two with us. Your sense of normalcy changes when you have a child with special needs. Our new normal is spending the whole day at hospital, or the whole day getting a leg casted.”

When she's not ferrying her children to doctors and therapists, Fahima is advocating for their inclusion.

One of her greatest frustrations is disability stigma. “It’s how people treat your special-needs child,” she says.

After her daughter Myreen spent a few years in a contained ‘community classroom,’ Fahima fought to have her educated in a regular class. “It’s the mindset at the school board that children who are differently abled don’t flourish in the regular class, and have to be segregated. They are very proud of their community classrooms.

“My whole philosophy is that there are no community classrooms in life. There is no community classroom in the workplace, in a place of worship or at an amusement park. We are expected to thrive in regular society. The school board is giving these students the mindset that they don’t deserve to be with socially ‘normal’ people. How do you impart social skills when you segregate students from society? Their peers are their best mentors.”

In the community class, Fahima says Myreen didn’t learn the regular curriculum. “They teach life skills, and it’s up to the teacher how she wants to teach life skills. My child was taught that the stop sign is an octagon for three years. Here’s a child who’s so bright, she knows all the polygons in the world.

“The community classrooms assume the students aren’t going anywhere. So while other students graduate with a diploma, they will graduate with a certificate. We’re closing doors on them before they’ve even tried life.”

All three girls are now in regular classrooms. “My kids have learned to manage in life,” Fahima says, yet they're socially isolated.

When Myreen joined a regular class, she “did well, getting lots of As and Bs. But she didn’t know how to handle the bullying,” Fahima says. “The other students put her up to do things, and she got in trouble. I proposed a buddy system, where an older student would support and mentor a younger student, and could be vigilant to prevent bullying. But the school didn’t do it. That would be going the extra mile.”

Fahima’s second daughter, Zafreen, is in Grade 3 on the ground floor of the same school. She wears leg and hand braces. Fahima is concerned about next year, when the Grade 4 classes move upstairs. She hopes the school will let Zafreen use the elevator. “Every time I ask for the littlest things, it’s like I asked for a kidney or money out of their own pockets, and the push back is crazy. I’m labeled as ‘that mom.’”

Fahima says it’s draining to advocate constantly. “How much can you preach and teach people along the way? I feel I’m doing this over and over again. Every year, I have to battle with a new set of teachers and reinvent the wheel.”

Because her children fall in a grey area, “they aren’t good enough for inclusion, but they’re too good for services,” she says.

Fahima pays for most of her girls’ therapy privately. “I have a new way of counting money,
” she says. I call it ‘therapy hours.’ If I see a $600 coat, I know that’s more than five hours of therapy, so I’m not buying that coat.”

Outside of school, her children tend to participate in adapted or special programs. “Even with camps, you have to choose the special-needs camps, because they will have the accommodations,” she says. “I can’t believe this is 2017 and I’m fighting for inclusion.”

Fahima recalls meeting a social worker who asked how she was coping with three children with chronic conditions. The social worker noted the increased risk of depression in parents who have only one child with disabilities. “I showed her my schedule of 300 plus appointments a year, and I told her I volunteer at places like Holland Bloorview. ‘I don’t have time to get depressed,’ I said.” Fahima laughs. “I guess I could pencil depression in on Tuesday, from 12 to 2.”

“I would be lying if I said it was easy. The hard work, the blood, the tears are too real. But, once you go past the grieving point, you have to hope for the better. You have to make the best of what’s handed to you.”

Volunteering keeps Fahima motivated and energized, she says. She co-founded the York Parent to Parent Support group, which helps parents advocate for their children at school and in the community. She also sits on Holland Bloorview’s Research Family Engagement Committee. “It’s a way for me to give back and a way for me to connect with people,” she says. “It’s not only my children whose social lives have suffered. When I’m volunteering, I don’t feel alone. I see other people in similar or even worse pain, and it’s a humbling experience. I get a reality check. I also like to share knowledge so that someone can learn from the lessons of my life. I hope that someone else may be able to bypass some of what I’ve experienced. And I feel supported when I hear other people’s stories. It’s not just me.”

Fahima recently spoke at a golf tournament by the Ontario Glass and Metal Association, which was dedicated to Holland Bloorview’s Family Support Fund. After talking about how her family has benefited from the fund, which supports equipment, recreation and respite, a participant offered to match the $3,000 that had already been raised. Most recently, she shared her story with Holland Bloorview research students.

Fahima became a family leader at Holland Bloorview even though her daughters are not clients. “We fall out of the catchment area because we live in Markham,” she says. “I’m allergic to the words ‘catchment area’ and ‘mandate.’ Every rejection letter I get has these words in it. We have nothing that compares to Holland Bloorview or SickKids where we are. Diseases don’t come by catchment area. It’s unbelievable that there would be such a difference in services just 40 miles from Toronto. I intend to speak to the CEO at Holland Bloorview about it, if I can.”

Fahima grew up in Iraq and Kuwait, and her family were refugees during the Gulf War. “When you’re a refugee, you’re not even treated as a human being,” she says. “You’re treated with no respect. You’re at the mercy of other people.” Eventually, the family was able to get a “flight from Jordan back home to Bangladesh.”

Fahima was studying engineering in Utah at the time of the 9/11 terrorist attacks. “I volunteered to speak about what it means to be Muslim, and that terrorism is not a religion,” she says. “No religion preaches to harm humanity. Instead, they preach unity, brotherhood and love for mankind. I wrote a paper called The Gulf War: Facts vs. Fiction and I got an A for it.”

Fahima came to Toronto 11 years ago. She is a Canadian citizen. Her oldest daughter Myreen hopes to be a surgeon and a pianist. She already has perfect pitch, her mom says. Zafreen wants to be a teacher. And Farzeen has her sights set on being a dancer. 
“We have the same dreams as any parent does,” Fahima says.

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Friday, October 27, 2017

These parents took a year off to learn to 'speak Oskar'

Photos by Alia Youssef

By Louise Kinross

Beyond The Spectrum is a candid, captivating film about autism that pushes you to think and see in different ways. It follows parents Carly Harnadek and Stef Pronk when they take a year off to do therapy with their son Oskar, who was diagnosed with severe autism at age two. Oskar has a twin sister, Izzy, and three other siblings, including older brother Ted, who has autism. The family lives in Simcoe County and homeschools their children. BLOOM spoke with Carly to learn more about why they made the film. Beyond The Spectrum is directed by Steven Suderman and can be watched in its entirety on TVO at the link above.

BLOOM: Can you tell us a bit about Oskar now?

Carly Harnadek: He turned five last month and he still enjoys his books and playing with toys, some of which aren’t age appropriate. He loves being outside—anything involving slides and swings and being in nature. He loves going for walks, walks in the river, and car rides. He likes hanging out with his siblings. He more observes them still—there are four of them. He’s finding his place in the family now, and coming into his own, and we’re waiting to see where his interests lie.

Unfortunately, his expressive language is still slow. He has good days when he can use single words for his needs. He has over 50 words. Mostly nouns and verbs from all of the labeling we do as parents. The words don’t always seem to come.

BLOOM: Does he communicate in other ways?

Carly Harnadek: He’s getting better with direction and pointing and in some ways, we know him really well. We speak Oskar.

BLOOM: You can interpret him.

Carly Harnadek:
Yes. His receptive language is really good. As soon as you say ‘did you want to go outside?’ he’s at the door, or ‘are you hungry’ and he’s in the kitchen.

BLOOM: It’s unusual for two parents to take a year off to work with a child.

Carly Harnadek: I’m not going to recommend it, unless you have a money tree in your backyard. You see me at the beginning of the film calling about respite and Intensive Behavioural Intervention (IBI) and Applied Behavioural Intervention (ABA), and everything has a wait list.

BLOOM: Yes, I remember in one case you’re told it will be a three-year wait.

Carly Harnadek: That was for IBI. We live in Simcoe County, which was one of the most underfunded at the time. I thought, do I fight the system and see where we get? It was a crap shoot. I thought we can spend all that time and energy and money, or we can do it in reverse. You don’t have the income, but you’re not paying for all of the supports. I needed to know that Oskar was getting the support and I wasn’t wasting my time with paperwork, I was spending it with Oskar. My husband has his own business and we were homeschooling. Of course it’s something you can only do for so long. It was a gamble, to see how far we could get in a year.

There’s been a bit of a backlash, with some people feeling I’m saying parents shouldn’t do IBI, when there’s so much advocacy here about getting it and the wait lists. My thing is there should be choice. It’s not a one-size-fits-all approach. When Ted was diagnosed with autism we were living in the U.S., and we learned about all of these different therapies. Behavioural-type therapy like IBI is what’s touted here, but it’s not necessarily everywhere. We were told that for very young children, play therapy was the best. And Teddy made huge gains with it.

BLOOM: Is that the Floortime approach?

Carly Harnadek: The program we used was called Communicating Partners, but it had its roots in Floortime.

BLOOM: In addition to play-based therapy, what were the other things you did with Oskar?

Carly Harnadek: We did biomedical treatment, so Oskar had a gluten and casein-free diet, and then we removed other things like sugar. He did sensory integration therapy and astronaut training and therapeutic listening.

BLOOM: In the early part of the film, Stef expresses hope that Oskar will catch up to his twin Izzy. What were advantages, or disadvantages, of Oskar having a twin, or his older brother Ted with autism, in terms of how you understood Oskar?

Carly Harnadek: In the beginning of the film, you see how one child is progressing along the standard milestones, and the other child isn’t. Even later, when Oskar did certain things like crawling or walking, he never did them to perfection like Izzy did. This keeps building, and he ends up getting farther and farther behind. Even though Oskar and his brother Ted present differently, having Ted gave me hope for what can be, and it also reinforced how important it is to really observe your child. The more you know your child, the better you can advocate for them.

BLOOM: When I was watching the film, I was thinking that as a parent it would be hard to have one twin speeding ahead and the other not.

Carly Harnadek: It is hard, you’re totally right, as Izzy gets older and older and does more and more. On the other hand, she’s an excellent modeler and Oskar really watches her. As parents, it can be hard with twins, because you have that feeling that one has gotten all of the extra attention—good or bad. But because Izzy has older siblings, they act as surrogate parents as well.

BLOOM: Can you describe the tension between you and Stef around whether Oskar’s autism needs to be accepted or changed? I think that’s a universal theme for parents raising children with any disability. At one point in the film, you liken it to parents who try to turn their gay son straight.

Carly Harnadek: Stef and I do come at autism differently. Ted is not Stef’s biological son. My first husband passed away, so that was a journey I had with another partner. To me, my boys' brains are wired differently from the start, and it’s a part of who they are. Stef feels more that things have happened to Oskar, so you’re looking at trying to fix or undo something.

BLOOM: Where do you and Stef sit now?

Carly Harnadek: We still have the same sort of feelings. I feel it is a part of who my boys are, and that society can label it however they want. Stef still feels it’s something that happened post-delivery. I’ve been in it longer, and met a variety of kids and adults with autism, and I know this is a really long journey. It will unfold however it will unfold. Stef's benchmark was Ted, so he saw it as a shorter journey. Stef was always the newer parent and I was the longer-journey parent. But we’re meeting amazing families and kids and over the years your perspective changes and evolves.

BLOOM: In the film, Stef is very focused on speech.

Carly Harnadek: Oskar has over 50 words now, but Stef would say communication with Oskar is what’s important, and that happens in lots of different ways. Now Stef wants Oskar to have something he’s passionate about. It’s funny, how a sense of communication is always a goal, but it’s changed from wanting words to ‘I want my child to be passionate about something.’

BLOOM: One of the adults with autism in the film makes the point that many stimming behaviours are a way for an autistic person to calm themselves, so they’re adaptive. But because of our social norms, they’re not acceptable.

Carly Harnadek: First of all, it was amazing to have adults on the spectrum acting as the voice of reason through the film. I feel so much that as parents we can learn from adults or teens that have experienced the journey firsthand.

Last year, Oskar went through a really rough six months where he was shredding paper like crazy—books and everything. If we had said ‘no shredding paper’ and focused on the behaviour, and eliminated it, we wouldn’t have gotten to the root of the problem, which ended up being inflammation issues.

BLOOM: At one point in the film Stef says that the work you do with Oskar could mean the difference between him being independent one day or institutionalized. 

Carly Harnadek: I think for us, that was part of why we took the year off. We thought ‘why are we going to rely on professionals and the system to help our child—when they get around to it—when we can take the reins and say we’ll do whatever we can?’ It was a waiting game that we didn’t want to play. 

BLOOM: When I was raising my son with disabilities, I think I felt like I had control over his outcome. And it was really hard for me to acknowledge, during his teen years, that I didn’t. I thought that if I worked hard enough and did all of the therapies and went to the moon and back for him, he would make a certain kind of progress.

Carly Harnadek: At the end of the day, I think we need to be able to say that we did the best we could, at that time. I think of Joseph Campbell, who says ‘You have to give up the life you were planning in order to have the life that is waiting for you.' The people you meet and the experiences you have with a child with special needs, you can’t get that with neurotypical children. After my first husband passed away, I realized life is short. You don’t know how much time you have. If you can live every day to the best of your abilities in that moment, and really cherish those little things, I feel at the end of the day you will live a life worth living. That’s what I’m trying to do for all of my kids.

With the autism and the homeschooling, I feel I’m on this path of life that yeah, sure is hard at times, and harder than living conventional, but it’s so much more enriched. You meet people, and I tend to have conversations with people, that I don’t think I ever would have had otherwise.

BLOOM: You get more real.

Carly Harnadek: Yes. You have to almost walk the path. That’s why we started our website The Muddy Path. We’re not walking on the sidewalk, with the majority of people.

BLOOM: How did the idea for the film come about?

Carly Harnadek: 
It was ours. I really felt there wasn’t anything out there for parents. There are lots of amazing books and blogs, but they take time. I thought wouldn’t it be great for families to be able to show a teacher or another family member or friend a film like this, and say ‘this is what I’m going through and I really need your help and support and understanding.’

We also wanted parents to not feel alone, and to have the idea of ‘that’s something I could try.’

Our idea was to have a bunch of families with different kids with special needs. We wanted to show how much effort and support is needed to raise a child with special needs—to create your village. We contacted Steve Suderman and took him some footage we’d taken as an example. He sent it to TVO. Then they decided to just focus on one family and follow the story for a year.

Being a little bit cocky, and naïve of what the process would be, we said yes. Steve came every three weeks and would stay from three to five days—the longest was seven. He stayed at a hotel or B and B, and he came every day at breakfast and stayed into the evening, sometimes till 11 at night. He wanted us to rehash the day, so we had to wait till the kids were in bed. He took over 250 hours of film.

BLOOM: Wasn’t it hard to have a camera in your house during such intense periods? I’m just thinking of how I often felt like parenting a child with a disability showed up all of my inadequacies. 

Carly Harnadek: That’s why we needed a break after we’d been filming for four months. Things weren't going well and the kids were frustrated. I felt like this massive failure and hypocrite. I felt I was going to be this huge let-down to parents.

We got worried about what Steve was going to show. Was he going to show us as these failures who didn’t want to get services for their kid? What did that mean for our family? The questions Steve asked us were quite private, and the discussions Stef and I had were the kind you’d have only with your spouse.

While we took time off, Steve sent us footage of things he’d been working on and told us about research he’d been doing. He’d been reading NeuroTribes.

BLOOM: By Steve Silberman.

Carly Harnadek: Yes. We were all reading his book and were inspired by it. We had huge discussions about it, and we decided we wanted to bring some of these things into the film. The break gave us a time to say that we wanted to change some things up, and we regained our confidence.

Now with the movie coming out, therapists and anyone who knows someone with autism—they're all loving the film. We hear things like 'I'm going to show it to my mother-in-law, and then she'll get it.'

A small group of parents feel that we're these privileged people who can take time off work: 'Who do they think they are—super parents?' They take the film as a recipe. That wasn't the point at all. We couldn't maintain that. Parents do need support. They do need to have a village to help with their child. You do need to have a coffee, so you can decompress because you just lost it.

I think most parents will in some way connect with us as a family. It is a daily struggle. You don't know what you're doing. As Stef says, you don't know if you have a road map. You're shoved into the abyss to figure it out for yourself. There's that initial fear of how am I going to do this? I can't do that.

BLOOM: At the end of the year, your thoughts on what's important about communication change. Can you explain?

Carly Harnadek: In the beginning, my biggest fear was that I couldn't connect with Oskar. Even though I could still squeeze him and give him a hug, because he didn't have high sensitivity to touch, I wanted to know that he knew that I was his mother, whether he could say it or not. At a certain point in the film, I said I didn't want him to be this talking robot. Ted always feels that he can come to me if he needs a hug or wants to be understood. And I wanted that for Oskar. The bigger goal was to know that Oskar and his mom had sort of found each other.

BLOOM: What did you think when you first saw the movie?

Carly Harnadek: I got to relive it, but as an outsider. I was always doubting myself. How much am I doing? And all of these mother guilt things. I think for me, when I got to the end of the film, I could say yes, I am doing a pretty good job.

Thursday, October 26, 2017

This and that, including autism and siblings

Photo by Alia Youssef

By Louise Kinross 

Beyond the Spectrum is a brilliant film about a Canadian mom and dad who take a year off to do therapy with their son Oskar (photo above) who's diagnosed with severe autism at age 2. The full feature film is available at the link above at TVO. I'm interviewing Oskar's mother Carly Harnadek tomorrow!  Stay tuned.

Last Sunday I attended an awards dinner to celebrate Dr. Peter Rosenbaum, Holland Bloorview's former chief of medical staff and co-founder of CanChild at McMaster University. He was receiving the Carmel Award of Merit from the Canadian Friends of Haifa University in Israel. In accepting the award, Peter said: "The work we do in childhood disability is, and must be, situated in the much larger canvas of human experience. This encourages us to see disability and difference not as categories of existence separated from normal and typical (as we have been taught) but as part of diversity." Peter was recognized for his lifetime work in pediatric disability research.

While at Peter's award ceremony, my husband and I noticed a well-thumbed book sitting on a cocktail table: Shtum. We were intrigued because its cover mentioned something about a boy who was non-verbal. I hadn't heard of this book, but it's a novel based on author Jem Lester's experiencing raising a child with severe autism, and has received rave reviews. Has anyone read it?

I'm always buoyed by accounts of Neanderthals who supported people with disabilities. This is an interesting piece about the analysis of a 50,000 year old Neanderthal skull that revealed that the man, who died in his '40s, had a number of physical disabilities and was profoundly deaf. "More than his loss of a forearm, bad limp and other injuries, his deafness would have made him easy prey for the ubiquitous carnivores in his environment and dependent on other members of his social group for survival," said anthropologist Erik Trinkaus.   

And finally, yesterday I received a comment on a BLOOM story from an adult sibling. In response to "Should kids be asked to care for a disabled sibling?, published in 2012, Gen wrote:

"Thank you for this article. This also reflects my experience being the eldest female child of a small family with a sibling who has an intellectual disability. My parents really struggled when we were children and from a very young age I was told I had to lift the load. I was a little parent. I learnt early on that my parents couldn't cope with any bad behavior or negativity from me and so I became a perfect child, bottling in my feelings and needs in service of my family. It's not my sibling or my parents' fault.

"I don't think this article is looking to blame parents or make them feel worse. It's simply encouraging a bit of thought and planning to see if there are other alternatives that could help give parents respite so that siblings can go through the normal stages of growing up. From experience, growing up too young and being a carer so early has left me socially isolated as I wasn't able to invest time in friendships. Bottling in my emotions caused physical, mental and relationship difficulties that have taken half of my adult life to resolve. This may seem extreme but take something useful away from this article. I have seen many parents in denial about their children's well-being simply because they felt attacked or embarrassed."

I wish I had some words of wisdom to share about how to ensure your other children get the support they need. Of course we've done stories like this one on the topic of understanding how brothers and sisters may feel, and practical strategies for parents, but I know it's a complex issue for many families.

Tuesday, October 24, 2017

Wanted: Surrogate parents

By Louise Kinross

Any parent of a child with disabilities will tell you that advocating for a good education for their child can be one of the most challenging, time-consuming and even soul-destroying experiences. It doesn't seem to matter if you live in Canada, the U.S., Europe or elsewhere. It is always a battle. 

So, what happens when a child doesn't have a parent who can argue for the kind of schooling and supports they need?

In the state of Maine, they're looking for volunteers.

Last week I watched this news item about a program that's recruiting "surrogate parents" to advocate for disabled students. 

The volunteer "would...take the place of their biological parent in Individual Education Plan (IEP) meetings, visiting with the student [and] really terms of their education," said the program coordinator Staci Fowler.

I googled the program and hopped on the Department of Education's web site.

There I found a 67-page PowerPoint for training surrogate parents, which is an excellent overview of special education in the U.S. (this could be a great resource for all parents).

The volunteer's role is to "interact with the school in the same manner that any parent would," reads one of the slides.

That includes visiting the child and the child's school regularly; consulting with those involved in the child's education; reviewing the child's records; attending Individual Education Plan meetings; exercising judgment in pursuing the child's interests; and exercising the child's due process rights.

I checked with Staci Fowler, the coordinator, and the program has 41 volunteers. They include teachers, special-education directors, education students and parents of children with disabilities. Many volunteers support more than one student. Most students are in residential care. At this point, no students are waiting for support. However, "even though we don't have kids waiting right now, we get several requests in a week," Staci said.  

The program is federally mandated and exists in each state, with some variations in how it's carried out, Staci said. For example, Maine pays for the volunteer's mileage, while some states pay a stipend for the person's time.

Staci said most volunteers have been supporting students for years.

It's hard to imagine how capable people could be recruited to take on such a daunting, long-term, unpaid taskone that has been known to bring parents deeply invested in their children to their knees.

But perhaps because these volunteers have expertise in the education system, and a bit of emotional distance from the work, they can be effective.

It seems to me that every parent advocating for a disabled student could benefit from a surrogate parentto coach and support them through the process. 

The job just became more tenuous in the U.S. with the announcement that its Education Department has rescinded 72 policy documents that outline the rights of students with disabilities, part of the Trump administration's plan to scrap regulations they say are outdated, unnecessary and ineffective.

To learn more about volunteering in Maine's surrogate parent program, e-mail

Friday, October 20, 2017

Racist, sexist words by patients, work peers plague hospitals

By Louise Kinross

In the last month, a few studies about racist and sexist comments in medicine crossed my desk. One survey is about bigoted comments made by patients to doctors. Another is about misogynistic remarks from medical staff to female doctors and nurses.

I also learned about a St. Louis University surgical resident who is suing the school and two of its medical school leaders because she claims she was discriminated against as a former nurse. “Stop being a nurse,” “too much of a nurse,” and “too nice” are comments the resident alleges supervisors made.

The studies I received are American. I'd like to know if similar studies in Canada exist. A quick search revealed only this 1996 piece in Studies in Political Economy: Anti-Black Racism in Nursing in Ontario and this position paper on violence, including verbal abuse, against nurses by the Registered Nurses' Association of Ontario.

In the first survey above of over 800 U.S. doctors, 59 per cent had received offensive remarks related to their age, gender, race or ethnicity in the last five years. African-American and Asian-American doctors were more likely to be on the receiving end of these verbal attacks, and female doctors were more often recipients than males.

As a result of these comments, 47 per cent had a patient request a different doctor or ask to be referred to a doctor other than the one recommended. Most physicians in the study, conducted by WebMD and Medscape in collaboration with STAT, said they had no training on how to handle these comments and were unaware of policies to aid them. In this STAT article about the study, eight doctors shared their stories of discrimination.

The second survey focused on bias against female doctors and nurses (the number of survey respondents isn't noted). The survey was conducted online by resident physician Morgan Shier at Providence Hood River Memorial Hospital in Oregon. 

When asked if they had ever been mistaken for someone in a position different from theirs, 71 per cent said "yes." Female physicians said they were most likely to be referred to by patients as “nurse,” even when they introduced themselves as the doctor. When asked if they’ve experienced sexual harassment in the workplace, 44 per cent of respondents said “yes.”

A third said gender played a role in them missing out on a raise, promotion, or key assignment. One participant wrote: “I was in line to do compressions in a code. A resident told me that women were not allowed to do them. When I asked why, [he] said ‘women were weaker and bad at it.’…I was kicked out of the room.”

Of 21 participants who identified as female and an ethnic minority, 67 per cent said “yes” when asked if they had to provide more proof of competence than others at work. Wrote one: 
I've often been told to rely on being a black female to get ahead in life or that my placement in a residency program would fulfill affirmative action quotes. 

When asked if females supported one another in medicine, 39 per cent said “no.” Wrote one: “The environment is so cutthroat that people in general don’t look out for one another.” A third said the role of the U.S. President and Congress played 
an extremely important role in addressing women's issues at work. Said one: “When Trump won, the boldness of racist and sexist healthcare workers instantly surfaced.”

A third study, published in the Journal of Women’s Health in May, found men introduced male speakers as doctors 72 per cent of the time at over 300 Mayo Clinic grand rounds, but only 49 per cent of the time when the speaker was female. In the latter case, they were more likely to call the doctor by her first name. This was interpreted as a lack of respect. 
I wonder if it in any way indicated that the female doctors were more approachable, which, from a patient and work peer perspective, is a good thing?

Which got me thinking about the doctors who criticized the St. Louis University surgical resident for being 
too nice. What patient or family has ever complained about a doctor who cares too much? 

Tuesday, October 17, 2017

Jonathan Mooney calls out our 'rhetoric of differences'

By Louise Kinross

Author Jonathan Mooney has a brilliant piece in the New York Times' disability series this week: You are special! Now stop being different (illustration by Dadu Shin).

In it, he recounts how the education system's focus on fixing, instead of embracing, his attention and learning disabilities stomped the creativity and self-worth out of him, and left him a depressed school drop-out at age 10. "I spent hours a day being fixed," he writes. "I was turned into a 'patient' who needed treatment rather than a human being with differences to be empowered."

I interviewed Jonathan in 2010 after he graduated from Brown University and published The Short Bus: A Journey Beyond Normal about his trip across the U.S. in a yellow, special-ed bus to meet kids and adults who've been told they're broken. It was one of my all-time favourite interviews.

What Jonathan finds in these folks is beauty, strength and a common humanity. "If you watch the strange, the other, the bizarre long enough, if you really see these people, you will find familiar pieces of yourself in their experience," he writes in that book. 

What he nails in his New York Times' piece is the way American culture preaches a "rhetoric of differences" and love of the individual, but as soon as a kid starts kindergarten, the message is "sit down, keep quiet and do what everyone else is doing." 

In reality, "all of us, even the so-called normal, move in and out of states of ability and disability every day," he writes. 

Jonathan notes that he still can't spell or sit still, but his success is built on "using support and technology to mitigate my weakness and build a life on my strengths."

He calls for a civil rights movement that rejects the idea that disability is the problem and calls for schools and workplaces flexible enough to include everyone. "We have to fight for every person's right to be different," he says.

I've never heard disability rights expressed that way. But it makes perfect sense. It's a rejection of sameness and convention. 

Thursday, October 12, 2017

Falling asleep on a home-care night shift spurs nurse's research

By Louise Kinross

Krista Keilty is a nurse practitioner and visiting scholar at the Bloorview Research Institute who studies parents who care for children who require a “mini-ICU” at home. These children have complex medical problems, use ventilators, and require round-the-clock observation. Krista has cared for these children and families as a nurse at SickKids—where she taught their parents the skills to transfer home—and as a home-care nurse.

In 2015, Krista published a study that found parents of kids who use ventilators at home risk their own health because they struggle to sleep—even when a nurse is in the home. More recently, she’s interviewed parents and home-care nurses to study the factors that contribute to poor parent sleep. She works at SickKids and Holland Bloorview to improve the care and training families of children with ventilators receive as they move from SickKids to Holland Bloorview, and then home.

BLOOM: How did you get into this field?

Krista Keilty: I came to pediatric nursing straight out of undergrad. It was my favourite clinical placement. At the time, I was living in Fredericton and there were very few jobs in New Brunswick. But SickKids was recruiting across the country and set up in a hotel room in Fredericton. In less than an hour, they had me sign a contract and I agreed to move from Fredericton to Toronto, to a hospital and city I had never visited.

BLOOM: Wow. What was your first job there?

Krista Keilty:
I was a staff nurse on the Ear, Nose and Throat (ENT) floor, which included a constant-care room for children with chronic complex needs—most of whom had a tracheotomy. I became very interested in being one of the primary nurses training families in preparation for their move home. We didn’t have respiratory therapists then, so nursing had a prominent role.

BLOOM: Given it was your first job out of school, were you nervous to be working with children who required such a high degree of care?

Krista Keilty: I don’t remember being nervous about caring for children with traches. I remember my eyes being wide open in a very large organization, with lots happening and so many opportunities in front of me.

I was warmly embraced by a number of really caring, longstanding ENT nurses who mentored me with a lot of enthusiasm. I learned that trache skill-set early in my career. In the day they called us ‘trache-trained,’ and we travelled around the building as needed.

BLOOM: What is your research focused on now?

Krista Keilty: Understanding the experience of families providing comprehensive medical care for their child at home has been the foundation of my career. Fast forward many years, my research focus is building a program that examines the experiences and outcomes of caregivers when children depend on technology and require constant observation. If a machine were not to function, there would be a negative outcome for the child.

BLOOM: Two years ago we did a story about your study showing parents of children who use ventilators at home are sleep-deprived, and this puts them at risk for physical and mental health problems. Did that study lead to any policy changes that enable families to get more nursing hours?

Krista Keilty: Not a lot has changed, except that everything has changed. With the community care access centres (CCAC) moving to the local health integrated networks (LHIN), there is interest in the LHIN looking at new models of integrated care and funding packages for pediatric home care. At least two LHINs, including Toronto Central, have tested self-directed funding, and the evaluations are pending. A recent Ontario announcement suggests there will be movement towards families having more say about their care, but the details are pending.

Not much has changed in access to home-care nursing. Family voices are being heard better, but change to new ways of doing things is slow. Discharges are delayed while families wait for home care to be available, and once home, the amount of care received is often inadequate.

I think that targeting improvements in [parent] sleep and respite remains a priority. We co
ntinue to build evidence to plan an intervention around the sleep disturbance we’ve documented. I’m doing a follow-up study here at Holland Bloorview where we examine the perceptions of family caregivers and home-care nurses about the factors influencing sleep disturbance.

BLOOM: What have you learned?

Krista Keilty: We heard from families about the inability to turn off the switch of worry and vigilance, even when a nurse is in the home to watch the child. Whether we call that insomnia or constant vigilance, that’s one area of work that may lend itself to behaviourally-based interventions.

Another major finding was the use of personal technology to help parents monitor their child or monitor the nurse. Families describe nurses falling asleep often.

Parents may have a baby monitor visible at their bedside with the volume turned on. Or they may ask nurses to text updates on their child throughout the night, from the child’s bedroom to their bedroom.

We know the influence of technology on sleep is a public health concern in the general population, and it’s likely a large source of interference with caregiver sleep.

BLOOM: But if a parent is afraid the nurse may fall asleep, it sounds like there are good reasons to use a monitor.

Krista Keilty: Consistency, continuity and competency in the nurses is important. Nursing agencies have a real challenge filling these shifts.

Right now, the duration of shifts is not well aligned with sleep needs. If you only have six-hour nursing shifts but you need eight hours of sleep, you’re already clipping your sleep to provide the hand over to the nurse.

Another study we’ve submitted for publication examined the use of unregulated caregivers for a longer shift—so hiring nannies, university students and others who are not classically trained for the work.

We studied 20 families who identified and trained a provider around competency and the family’s values about how they would like the care provided. They used some public and some private dollars to pay them. We wanted to know if having an unregulated caregiver who worked a longer duration of shift was an acceptable way of supporting the families.

BLOOM: How did that work out?

Krista Keilty: The families didn’t communicate any safety concerns with unregulated caregiver use. They did speak about a large burden on them to identify, hire and train these caregivers. They didn’t always feel confident that they knew how to do that, and there was no formal support system to help them.

But they also told us they appreciated having them as part of their care team. They often fit in well with the families and, once trained, offered competent and compassionate care.

BLOOM: Can you talk about what it’s like to be a home-care nurse on a night shift?

Krista Keilty: We’ve asked nurses that question in our recent study. They tell us that the nature of the work is very difficult. It can be isolating and lonely. It’s not like working in a busy hospital at night, where you have colleagues who can help you stay awake.

Not only are home-care nurses working in isolation, but one of the instructions from many families is to work in the dark, so they don’t wake the child or the family. But being in the dark is the most major cue for sleep. In a focus group, I asked how many home-care nurses had fallen asleep on the job, and there was a lot of nodding in the room.

BLOOM: Can you tell us about your own experience falling asleep on a shift?

Krista Keilty: Early in my career, when I was working as an ENT nurse at SickKids, I was also employed by a home-care nursing agency. A number of us at SickKids and Holland Bloorview were moonlighting. We did this to support the families as they started to leave the hospitals with medical technology.

One day, I got a call late in the afternoon to do a home-care shift that evening. It wasn’t uncommon to get last-minute calls. That day I hadn’t worked at SickKids, but it was my day off, and I’d been at the beach. I was sunburned and tired and in no frame of mind to be staying up all night. I declined the shift—many, many times.

They kept calling back, and I felt a lot of pressure. Finally, the actual owner of the agency called me, and she wasn’t taking no for an answer. The shift was in Oakville and I’d never travelled outside of Toronto, since I was from New Brunswick. The owner told me to get on the GO train and she’d pick me up in Oakville and drive me to the house at 11 p.m. I’d be working with a family I’d never met, with a child whose care I wasn’t familiar with, in the dark.

The child was on the main floor of a large suburban home. I met the family at the door and they briefly went over the child’s care plan and showed me the equipment. The boy was asleep, non-verbal, and on a ventilator. The parents went off to bed and I did my initial assessment of the child and provided care for a number of hours.

Sometime between the hours of 2 and 4 a.m., which tends to be the witching hour for safety incidents related to sleeping on the job, because it’s the hardest time to stay awake physiologically, I fell asleep. The father woke me up when he heard the kangaroo pump beeping, from a distance, in this large home.

I was forever changed. I realized I’d let him down and put the child at risk by not being available to the child when clearly this was an alarm to be alert to. I failed to hear it. I tried hard to have a conversation with the family the next morning about it, but they dismissed me, and I’m sure they never wanted to see me again.

BLOOM: How did this experience change you?

Krista Keilty: I had to reflect on how the provider-family relationship was structured in such a way that I was postured to be the expert, when clearly, just the fact that I had the title ‘registered nurse,’ didn’t mean I was good enough that night. I was trained on the technical side for this child’s care, but I didn’t know the family and I didn’t have a rapport with them.

I was a caring, hard-working, professional nurse, so I knew I was probably one among many who had let the family down and posed a safety risk. And, importantly—I knew I had threatened that family’s ability to get respite in the future, even when a nurse was in the home.

BLOOM: Because they would be afraid it would happen again.

Krista Keilty: Yes. This was a pivotal story in my career that spurred the idea for my PhD study.

BLOOM: What do parents say is the greatest challenge caring for their child at home?

Krista Keilty: They continue to tell us that it’s the complexity of the health system—that navigating that system takes a lot of their time and energy. In another study, I looked at the ways families spend their time. The ‘case-management’ they did for their child was a large time consumer, and it was also the most stressful part of what they did.

That’s partly why I’m excited to be here in this role. I’m working on a quality improvement project to support the families’ transition from SickKids to Holland Bloorview and then home. I’m trying to smooth those processes, and we have families engaged to tell us what it needs to look like.

BLOOM: In addition to sleep deprivation, I saw a paper you wrote that talked about how having a child with complex needs at home affects the family financially.

Krista Keilty: Yes. We’ve documented that income levels of family caregivers are less than those of a community-based sample with healthy children. Family caregivers of children with medical complexity are under-employed at a time when many would be in their highest, income-earning years.

The burden, for families, has been documented, in terms of negative impact on income, depression and anxiety, and in work by Dr. Eyal Cohen at SickKids and others, even shorter lifespans in mothers due to premature death. These data spur me, and others, on.

BLOOM: What emotions do you experience working with these families?

Krista Keilty: The gamut. I've learned that I'm highly empathic to the emotions of those in my environment. Given families can be sad and angry at times, then I find I can feel this way, too. Providers can be angry, or at least highly frustrated. But instead of feeling downcast, I most often feel happy and excited for what is possible. Families frequently experience uplifts and share their joys and hopes, which I find contagious.

They are very very thankful when their care is compassionate and supportive. Clinical and research colleagues are also energizing. I'm a big believer in the power of sleep. I need a lot of it. And it helps me get up every day with the will and ability to take on new challenges and cope with whatever comes my way. And, of course, a walk in Spiral Garden is always good for the soul.