Payal sees children's rehab from a newcomer perspective

By Louise Kinross

Seven years ago, Payal Khazanchi and her family immigrated to Canada from Oman. At age five, Payal’s daughter Aakanksha was diagnosed with global developmental delay. Payal assumed they’d be connected with rehab services, and be able to meet other families like theirs.

But it didn’t happen.

“Because education and health are government-supported, I presumed if there was an issue with my daughter, the system would tell me where to go,” Payal says. “But instead of one single, straightforward path, the system is so fragmented that there are a million paths to reach what you need.”

It took Payal years to find Holland Bloorview, and it was only due to a chance encounter at a baking class when an acquaintance mentioned the hospital. Before that, Payal had quit her job to take care of Aakanksha, who is now 12. She spent hours on public transit travelling to multiple spots all over the city for services like physio, dentistry, orthotics and optometry.

Payal grew up in India before moving to Oman. She says Canadian health providers need to understand that disability is stigmatized in both countries, and in other areas in the region. “Newcomers come with the mindset that disability is a taboo, and you shouldn't talk about it. They may be concerned that their child's disability will affect their legal status, such as permanent residency or Canadian citizenship. We didn’t have any family here and we didn’t know anyone in a similar situation.” 

No one helped Payal navigate the system, so she had to “start from scratch,” searching for resources online.

“For the first three years, I didn’t know there was federal and provincial funding for families like ours.” For example, Payal’s daughter wears glasses that cost $750 a pair, but no one explained that a part of it could be covered under these programs.

Once Aakanksha was seen by a developmental pediatrician at Holland Bloorview, she began receiving therapies and other services under one roof. “It saves me a lot of time running around as a parent. Holland Bloorview is like a one-stop for resources.”

Payal says Holland Bloorview can better support newcomers by identifying them early on, and connecting them with a social worker and a family leader, a parent in a similar situation who volunteers at the hospital.

“The social worker has the knowledge, awareness and resources to share with someone new. I only got a social worker after six years in the country. She showed me about 12 forms. In three years of searching online, I had found eight, and filled them in myself. Getting this information, and filling the paperwork out, is a challenge for newcomers. We also need respite, and we don’t know where to go or who to trust.”

Payal says meeting Jean Hammond and Beth Dangerfield, parents who run our family leadership program, was life-changing. “It was wonderful to know that I’m not the only one struggling, and that I could talk with someone who would understand if I was overwhelmed or anxious. If I had been connected with a family leader earlier on, I wouldn’t have felt so lonely.”

Now Payal is giving back as a family leader herself. “I want to be a voice for immigrants who were like me,” she says. “I want to be someone they can talk to, who can share what I missed out on when I was first here. I want them to feel that they're accepted and can gather more information—and that they're not the only one.”

She’s doing a master’s in adult education and community development at the Ontario Institute for Studies in Education at the University of Toronto. “I'd like to help other immigrants come out of their shell and help their child feel comfortable in their own skin. I'd like to help newcomers navigate the system and share the knowledge I've gained over the years. If I can encourage someone to access supports, and change their mindset, based on my lived experience, I will have contributed my bit.” 

Payal recently interviewed eight Holland Bloorview parents to get their feedback on a research idea she has where one child with a special talent will mentor another. “When we go to the hospital or school, the focus is on the child’s disability and what’s wrong. I want to change the lens from what’s wrong to what’s strong? If a child has some innate abilities and strengths, let’s focus on those. The parents I spoke with said they believe their children have abilities that can be built upon. They’d like to see their child sharing their skills and feeling good about themselves, as opposed to always being at the receiving end of a support person or therapist or care worker. They feel their children can not only receive learning, but impart it as well.”

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Doctors need to get comfortable with intellectual disability

By Louise Kinross

Global developmental delay (GDD) isn't a long-term diagnosis, write two doctors in a commentary piece this week in The Journal of Pediatrics. So why does it appear so frequently in medical charts across a person's lifetime?

"Disability becomes the Lord Voldemort of clinical medicine—something so terrible it ought not to be named," write Dr. Eyal Cohen, a pediatrician at SickKids in Toronto, and Dr. Amy Houtrow, chief of pediatric rehab medicine services at Children's Hospital of Pittsburgh.

The doctors note that clinicians contribute to the stigma of intellectual disability by continuing to use the label of GDD. They attribute this word choice to doctors' unconscious bias against people with intellectual disability, to not wanting to upset parents, or to worrying that they don't have adequate time to explain the disability. "The unwillingness to name intellectual disability is widespread in medicine," they say.

They note that the word delay often causes confusion in parents, who assume it means their child will eventually catch up to peers.

Doctors need to be precise in using the term intellectual disability. "Disability is not a disaster," they write. "People with disabilities live with the realities of their disabilities every day, and our inability to acknowledge this does not stop them from being real; it just stops us from providing the best care possible."

The authors offer a suggested dialogue between a doctor and parents, who say they didn't realize their child's problems would be permanent.

It includes saying "I would be happy to talk more with you about the disabilities that he has...I know having these conversations can be stressful and sad."

Something that is missing for me, as a parent of a child with disabilities, is the message that my child has value. It's one thing to tell parents that disability is not a disaster, it's another to encourage parents to consider what it is that gives humans, and their child, value. I've written about this here: Why parents get hooked on 'normal'.

But I wonder how many doctors have truly had the time to sit and ponder human worth, either as a medical student or as a clinician? Is our value tied only to what we do? Is it something to be earned through how we perform? Is it our paycheque, our IQ score, or how well we fit Western conceptions of beauty and athleticism?

If we can't measure up, does our value as a human being plummet? 

Because if you haven't actually wrestled with these questions, I think it will be hard to convey to parents that their child with an intellectual disability has value. 

It's not something you can fake. 

It reminds me of an interview we did with the author of a study that looked at 68 transcripts of conversations between doctors and parents discussing life and death medical decisions for their children.

Lead investigator Dr. Tessie October, who is a pediatric intensive-care doctor at Children's National hospital in Washington, D.C. said: "We don't think of how we talk with families as being a procedure, in the same way we think of putting in a central line or a breathing tube." As a result, it's not taught and evaluated in the same way in medical school.

I think that needs to change, whether the topic is describing high-stakes medical decisions to parents, or telling them that their child has an intellectual disability.

Because that kind of medical training benefits the emotional health of families and doctors alike.

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A sister's story fuels this scientist

By Louise Kinross

Krissy Doyle-Thomas is a neuroscientist at Holland Bloorview. She's studying whether a brain-imaging tool that detects blood oxygen levels can identify pain in children with autism who use little or no speech. CBC profiled Krissy during Black History Month as one of 150 black women who have made a place in Canadian history for excellence in their field.

BLOOM: What led you into children’s rehab?

Krissy Doyle-Thomas: For me it was out of a need. My younger sister Eddie-Marie was born at seven months and there were some complications: she wasn't getting all of the oxygen she needed. She was diagnosed with global developmental delay when she was very young.

We were a young immigrant family trying to navigate how to get help for her. We were in and out of SickKids for a very long time, meeting with specialists to address her medical needs in addition to trying to understand her global delay. The lack of answers my parents had about how to best support her really impacted our family. 

I was connected to the frustrations and stresses my parents were feeling and that started my desire to learn more, and to be someone who has that kind of information to share. I initially wanted to become a medical doctor. But then I went to school for psychology and I discovered the brain during one of my courses and I said 'This is what I want to do.'

BLOOM: Some people look at the brain and don't want anything to do with it!

Krissy Doyle-Thomas: I'm intrigued by the mystery of it. The fact that one organ controls everything we do. Of course we have other vital organs, like the heart. But the way our understanding of self and the way in which we operate sits in that one place, for me that is intriguing. I wanted to learn about the thing that makes me most like myself. And then when things go wrong, how can we address that? My passion is on the research side. I'm passionate about using the information I have to help find solutions for treatment, and also to educate people about the brain and the disorders I study.

BLOOM: How is your sister doing now?

Krissy Doyle-Thomas: She's fantastic. She's grown into a very independent, mature woman. She's married and has a little girl. She's got a knack for computers. My dad is an accountant and she supports his business. She knows how to handle data. She's developed a life that is who she wants to be. But growing up she had a hard time comparing herself to her sisters, who are all now senior executives in the business world, or me, with my PhD. When she let go of that, she really blossomed in her own way.

What I learned was how we view success is a personal thing, it's individualized. When my parents finally came to terms with the fact that Eddie doesn't need to fit into the same mould that their other daughters do, that allowed Eddie to be who she really is. To accept herself and the 'wonderfulness' that she is.

BLOOM: Can you describe your research?

Krissy Doyle-Thomas: We're using a new brain imaging tool that is portable and inexpensive and allows us to image the brain and see changes in blood flow in response to a task or state. When neurons are active they require oxygen and blood flow goes quickly to the active areas. As oxygen is released the signal changes and we can see where in the brain is active. 

We want to see if this can pick up the pain response in kids who have autism and are non-verbal. Our clinical partners see these kids in our psychopharmacology clinic. They're referred for aggression and irritability, but we don't really know what might be driving this behavioural response. Often times later on the clinicians discover medical conditions that are very painful. We're trying to create a tool that could be used in the clinic to help identify kids who may be experiencing pain and can't tell us.

BLOOM: What's challenging about the work?

Krissy Doyle-Thomas: Understanding the cortical pain response in itself is a challenge, in the absence of emotion. How are we going to think about pain when physical and emotional pain may happen in tandem? A lot of times both need to be treated. We want to know if we can get a reliable signal that will warrant medical intervention.

BLOOM: Why did you choose to study autism?

Krissy Doyle-Thomas: I really wanted to study global developmental delay, but when I was in school there weren't many researchers looking at that. I thought autism is another developmental disorder, if I start there, perhaps I can learn generalizable skills. Then when I'm an independent researcher, I can branch out. My end goal is to make my way back to studying global developmental delay.

BLOOM: What do you love about your research?

Krissy Doyle-Thomas: I love that it provides answers to families, not definitive answers, but more information that helps families understand the brain and autism and will eventually be translated into care and treatment.

BLOOM: Autism is a controversial area because many autistic adults are opposed to the idea of cure and want others to value their way of thinking.

Krissy Doyle-Thomas: I agree with them. It goes back to how I feel about my sister. When a person figures out their identity, we embrace that. If someone wants to embrace their autism as who they are, we need to be respectful of that. And if someone wants to treat their autism, we have to respect that. It needs to be individualized.

BLOOM: You were talking about what you love about your job.

Krissy Doyle-Thomas: I meet really cool kids and they're all so different and I appreciate that. I think diversity is very important. You meet all kinds of people with different abilities, ethnic backgrounds, genders. Everyone brings something to the table. You learn so much about being a human being by walking in the halls here. That's what I love about being in an academic health centre. It helps me to have a new outlook on life—be who you are, and let others embrace that. 

BLOOM: There's a lot of literature on how having a sibling with a disability affects kids. While some is very positive, other research shows brothers and sisters can find the complexities that disability adds to a family to be challenging.

Krissy Doyle-Thomas: I did find it challenging, yes. I always wanted to help, and when we couldn't find answers for my sister, I felt frustrated. She didn't always have the insight to know she was different, she just knew she was being bullied. My parents tried to put these protective parameters around her and she pushed against that. We didn't understand global developmental delay and what she could or couldn't do, and she wanted that independence. It was hard for her to understand why she couldn't do the things we were doing.

BLOOM: There's a group at York University doing research on the barriers facing immigrant moms of children with developmental disabilities. You mentioned you were an immigrant family. 

Krissy Doyle-Thomas: We moved from Trinidad to Toronto when I was nine and my sister was two.

BLOOM: This York group held a workshop here and the diversity in the room was unbelievable. There were a number of support groups that I had never heard of: a group for Muslim moms raising children with disabilities and another for Chinese moms and another for Somali moms. There were also lots of service providers from outside Holland Bloorview. But there were only a handful of our staff there. They were talking about how challenging it is to get the services your child needs when you don't speak the language or don't understand how to advocate in this culture.

Krissy Doyle-Thomas: We spoke English, so that wasn't an issue for our family, it was more not knowing what the best treatment was and how to get it.

But there was a situation recently that opened my eyes in this area. When the CBC story on black women came out, we did a series of photoshoots in groups of about 30 to 50 women. We all shared about what we did, and when the others found out I was a neuroscientist, they had so many questions about their own kids and other family members. Some had been diagnosed with autism or had a concussion or something else. They kept saying 'You have the answers our community needs to hear.'

It made me realize we have to go out into the community, instead of saying 'come to us.' Keeping information within the four walls of my workplace is not what my community needs. Information can be received in a different way if the person giving it understands where you're coming from culturally. So the families say 'Okay, I get this, they're speaking my language, in more ways than one.'

BLOOM: Have your thoughts on disability changed since you came here?

Krissy Doyle-Thomas: Definitely. It's about appreciating people for who they are and not holding anyone up against any one measuring stick. It's about embracing the person and allowing that person to shine for who they are, without biases, or without them having to fit into a mould. This organization opened my eyes to that. It wasn't an aha moment. But the culture here has become my culture, and changed my outlook.

Krissy Doyle-Thomas's research is funded by Holland Bloorview's Centre for Innovation.

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'I'm ashamed to be jealous:' A special-needs dad

Yesterday this candid piece about being a special-needs dad on LinkedIn blew me away. It's such a rich account of the many emotions experienced by parents of children who don't meet conventional milestones. Author Mike Cook, a manager of Enterprise Services at Dell, Inc. in Oklahama City, said we could reprint it here. Enjoy! Louise

By Mike Cook

I have been blessed with an amazing family, starting with my wife (my rock). She is truly superwoman, and I don’t know how she does what she does, but I thank God for her every second of every day.

Between the two of us, we have four amazing boys.

Our oldest is 22 years old, recently married, and is in Air Force Intelligence. Our 20-year-old graduated valedictorian and was on the dean’s list in college. Our 12-year-old is in all-honours and read the Harry Potter series before he was five.

And last but not least is our youngest, Matthew, who will be three soon and is the happiest little man in the world. I wanted to share about all of our boys so that you realize how blessed we have been with some very bright young men.

At first glance, you would never be able to tell that Matthew is any different from other toddlers his age. No matter where we go, complete strangers always make the same comment: “That’s the happiest little boy I have ever seen.” Matthew always has a smile on his face.

What they don’t realize is that Matthew has major delays in his motor, speech, cognitive, and social skills. The doctors call it global developmental delay (GDD). In layman’s terms and what I tell everyone is: He doesn’t walk or talk yet. Doctors haven’t been able to determine what’s causing the delays yet, but for the last two years, our precious little boy has had to see more specialists than you can ever imagine.

Matthew currently has speech therapy, occupational therapy and physical therapy multiple times each week, and I must admit that raising a child with any type of delay, disability, disorder, condition, or special need is both a blessing and a challenge.

It’s a challenge for the obvious reasons. But it’s a blessing too: You can’t imagine the depths of victory and joy you experience when you see your child's reaction to overcoming his own challenges.

It’s the simplest things, like seeing his eyes light up waiting for you to acknowledge what he did when he puts his cup down softly instead of throwing it; the smile on his face when he climbs off furniture without any help, the clapping of his hands after he uses sign language to say “thank you,” or my favourite—the high-pitched dolphin-like sound he makes when he scoots over and hugs me to say “I love you!” Those moments are when I realize how blessed I am and what life is truly about.

People know me as a very open person who can usually talk to anyone. But what many don’t know is that after Matthew’s issues arose, I rarely express my deepest feelings. Instead, I internalize the problems we deal with and swallow them whole, because that’s what a strong father, husband—a strong man—is supposed to do.

I don’t want anyone to know how terrified I have been at times because I don’t want them to feel pity for me or think that I don’t love my son with all that I am. So, I want to share a few things about raising a child who has special needs in hopes of bringing a little understanding to those who don’t know what it’s like.

It’s tiring

As all parents can attest, parenting is already an exhausting endeavour. But parenting a child with special needs pushes us to an entirely new level of fatigue.

Even if I get a good night's sleep or have had time off, a level of emotional and physical exhaustion is always there, from the weight of tending to his needs.

Hospital and doctors' visits are not just a few times a year. They are typically a few times a month. Therapy sessions are multiple times each week. Paperwork and bills stack up, and spare time is spent catching up on cleaning, working with him on trying to crawl or walk, searching the Web in hopes of finding similar cases with cures to help him learn, or advocating for him in the medical and educational systems.

The emotional stress of raising a child with special needs has peaks and valleys that seem so much more extreme than those encountered in regular life. I am always so appreciative of my employer, Dell, Inc., for helping make life easier—from arranging schedules around Matthew’s appointments so I can work from home if needed, to understanding the last-minute fill-ins if my wife may not be able to make a therapy session or doctor’s visit.

It’s scary

I often worry: Am I helping him too much? Am I not helping him enough? What if I’ve missed something—a treatment or a diagnosis, and that window of time to treat it? What about his future?

Will he ever drive a car? Will he ever get married? Will he ever be able to live independently? I fear thinking of the hurts he will experience if he doesn’t catch up and is tagged as “different” by other kids in this harsh world. I am scared about finances. Finally, I fear what will happen to Matthew if anything were to happen to my wife or me.

In a way, I feel ostracized

I feel we are now outsiders due to a fear that something could happen to Matthew because he can’t protect himself the way a “normal” child can. I worry that he can’t say “stop” or “don’t” or that he won’t realize he should have said it until it’s too late. I worry that people simply won’t understand him. I’ve seen the sideways glances and rolled eyes from strangers when he throws food or does something they consider rude or disrespectful, which makes going out to restaurants even more difficult.

When my wife and I go to parties, we end up by ourselves, whether or not we have our little boy with us. If he’s with us, then we’re constantly watching him to make sure he’s okay. We don’t make our rounds and say “hi” to everyone. We simply can’t for the reasons I’ve mentioned above.

If he’s not with us, then we’re worried that something will happen to him away from us. We don’t go out with our friends the way we used to because it’s too frightening to leave him with someone who might not understand what he’s trying to say or sign. Sometimes it’s even too hard to get your own family to understand just how stressed out you are.

I’m ashamed to be jealous

Even with the beautiful family and blessings I have, I can’t help but feel a tiny pang of jealousy at times when a child younger than Matthew runs past me or calls out to his or her parent the way I want to see my son Matthew do.

What’s even worse is that this envy makes me feel as guilty as can be, because I am so proud of everything Matthew has accomplished. This little boy has worked harder than any of our other boys to accomplish everything he has been able to do, but I wish it hadn’t been so hard for him.

I hate when that little pang of jealousy hits me—this so-called “normal” child in front of me didn’t ask for my little boy to have a learning disability. This child doesn’t realize that when he calls out “Daddy,” for a split second, I think, “Why? Why did this happen to my son, and why can’t I hear him say 'Daddy'?" Then I push that thought as far away as possible because these questions are not fair to that child or to my little boy.

If Matthew ever reads this in the future, I want him to know that I have never regretted a second with him. Matthew, you have made me a better parent and a better person. You amaze me every day with every single accomplishment you achieve and the way you are always happy. I only wish I had known what I know now when your brothers were your age, for I would have spent more time with them.

I love talking about my son

My son is awe-inspiring. Some days I want to shout from the rooftop how funny and cute he is or how he accomplished something. Other times, when I'm having a rough day due to being made aware that Matthew is sick yet again, I might not say much.

I don't often share with others, even close friends and family, the depths of what I go through when it comes to Matthew. I feel as if something is always going on, and I don’t want to be a burden or seem negative. I do appreciate when people ask me about my son, but if I'm not sharing, please don't think that there isn't a lot going on underneath, or that I don't want to let you in.

Raising a child with special needs has changed my view on life. Nothing breaks this “lens” more than having a sweet, innocent child who was born with impairments that make ordinary living and normal “performance” difficult or even impossible.

My life with Matthew has helped me understand that true love is meeting someone exactly where they are—no matter how they stack up against what the world thinks they “should” be. Raising a child who has special needs shatters all the expectations that we build our lives around and pushes something else to the core: love and understanding.

I’m human

So, to our friends and family, future friends we haven’t had the pleasure of meeting yet, or strangers who know and love a special needs family somewhere in this vast world of ours:

What can you do?

Strive to include. Work to understand. Go out of your way on occasion to help a family who has a child with special needs. Realize that the stress and strain take their toll. We’re just trying our best to survive. If we seem secluded or if we’ve offended you with our words or our actions, we apologize for our moments of weakness. Hopefully, someday we can move forward together.

We do our best to make our family life look normal and to act like everything’s fine. And yet, we wish people might see through that facade every once in a while and understand that we truly appreciate the slightest effort to make us feel...special, just as our son is special.

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