Wednesday, December 14, 2016

Doctors who work with brain-injured newborns need humility

I’ll never forget a time I went to visit a child in the neonatal intensive care unit (NICU). I was in the waiting room during a shift change, and another mom was talking about her newborn and said that the doctor had recommended withdrawing care. “I realize he’ll have cerebral palsy,” she said, “but he’s still my my son.

Predicting how a newborn with brain injury will be affected is a science marked with uncertainty, yet parents need to make decisions about treatment. At the same time, parents and doctors may have different beliefs about whether it’s possible to live a good life with severe disability.

Given these dilemmas—and the ethical questions they prompt—a group of researchers published an article in Developmental Medicine and Child Neurology suggesting five qualities clinicians need to keep top of mind when working with parents.

They are reflection, humility, open-mindedness, partnership and engagement.

The research was funded by the Kids Brain Health Network and brought together neonatologists, parents, child neurologists and other clinicians.

BLOOM interviewed lead investigator Eric Racine, director of the Neuroethics Research Unit at the Clinical Research Institute of Montreal to learn more.

BLOOM: What do neonatologists say is most challenging about giving a prognosis?

Eric Racine: Our paper speaks to the tension between the desire to obtain certainty about a child’s future outcomes and the lack of data to make such calls.

BLOOM: I assume that clinicians feel a lot of pressure from parents to make a definitive prediction?

Eric Racine: I think you will see parents who really desire certainty, as well as parents who are comfortable with uncertainty. There have been studies with patients and parents who say they appreciate clinicians who can communicate the uncertainty of prognoses, so it may be an assumption that we think we need to provide certainty to parents. We probably shouldn’t underestimate the complexity of information that can be conveyed to parents—not in one clinical encounter, but as part of an ongoing relationship.

BLOOM: The paper suggests that doctors hold biases against disability.

Eric Racine: Biases against disability—and a misunderstanding about the possibility of a good quality of life with disability—are common challenges and in some ways explainable. Clinicians are trained to heal, to treat, to alleviate injuries so their own professional ethos is driven by a desire to avoid ‘poor outcomes.’ For this reason, doctors need to make an additional reflection to put these values in brackets and say ‘people from different backgrounds may view things differently.’

BLOOM: What was the goal of your research?

Eric Racine: To provide an ethics framework for communication with parents of a newborn with severe brain injury. It includes a number of questions that foster self-reflection and self-assessment in clinicians. We didn’t provide guidelines because we felt that this would be too prescriptive.

BLOOM: You list five qualities that clinicians should demonstrate when working with families.

Eric Racine: Yes. The first one is reflection. This is the ability to step back and re-examine one’s immediate opinions about prognosis and ask questions. It’s having the mind-frame that no matter how much experience you have, perhaps others would think differently about the prognosis or the quality of living with those projected disabilities.

BLOOM: The next one is humility.

Eric Racine: When you realize the limitations of scientific knowledge and your own knowledge, and the existence of your own biases, you need to remain careful in giving any kind of definitive opinion about “This child will …” The idea of humility is a buffer to any form of arrogance. The clinician, who has seen many, many similar cases, may appear arrogant or distant to the parents who are really struggling at the bedside.

BLOOM: So you’re saying that because the doctor may have seen these cases so many times, they may appear indifferent to the enormity of what the parents are going through?

Eric Racine: Yes, this is something they do every day. But there are ways to be empathetic and connect with parents that dampen perceptions of being distant or arrogant.

BLOOM: I’m sure that in some ways when a doctor appears distant it is perhaps because they’re protecting themselves from their emotions.

Eric Racine: That’s why self-reflection is so important. We need to take a step back and ask ‘why are we doing things this way?’ If it’s because the situation is painful and difficult, then that needs to be acknowledged and discussed in clinical teams so that the root causes are [recognized] and addressed.

BLOOM: The next quality is open-mindedness.

Eric Racine: This is about being willing to be confronted or challenged by outcomes that contradict your prediction, or by values other than your own. A clinician may view things one way, and the parents may view it very differently. It’s important to respect where people are coming from. It’s also important to be open-minded about things not going the way you predicted they would go.

Partnership is the next idea, and there’s a whole literature supporting shared-decision making and more collaborative interaction with parents. The idea is that people bring different strengths or types of knowledge to the table. It means that maybe parents don’t have the technical experience, but they may have other important pieces of the puzzle. They may have a sense of what it will be like for them to live with a situation. There are different models of partnership.

For example, sometimes a parent is recruited to be an advisor in the NICU environment. It’s important that families know they can be connected with other families who have gone through similar situations. It may not be obvious to parents how they can be involved, so clinicians need to let them know about the opportunities.

BLOOM: When you’re talking about care decisions being made, are you mainly talking about whether a decision to withdraw care is being considered?

Eric Racine: Yes, that’s one of the big decisions. But there are other kinds of decisions related to treatment and palliative-care options. A lot of these are difficult, end-of-life situations.

BLOOM: The last quality is engagement.

Eric Racine: That springs from the fact that we’ve heard parents voice concern and sadness about the fact that when they leave acute-care there is limited support for them.

BLOOM: So you mean when parents bring a child home? That they no longer have contact with the NICU doctors?

Eric Racine: Yes. It’s important for neonatologists to realize that there’s a gap in ongoing services for the patient and for the family unit, and to do something about it. The acute-care environment needs to do a better job at bridging with chronic-care environments. It’s not good that families have such limited resources and that they feel abandoned. Clinicians need to be engaged and be advocates. They need to participate in generating long-term follow-up data. One of the critical gaps is building databases where outcomes are collected and predictions are tested for their validity.

BLOOM: I imagine that in addition to needing to have a better understanding of outcomes, it’s important for clinicians to understand how families cope over the long term.

Eric Racine: Yes. I’m in favour of collecting holistic data—not just about the disabilities and function of a child, but about the family unit and the impact on the family. Parents in acute-care want to know what it’s like to raise a child with severe neurological impairments. They want to know how that works in reality. Most people don’t have a clue about that.

BLOOM: Is there a role for stories about real families here?

Eric Racine: Yes. Those narratives would be an interesting way to engage families in conversations. It can be hard to make sense of family experiences, however. You can have a family of a child with very minimal cognitive impairment who are really, really struggling and finding it very, very difficult. And then you can find situations where the child has very severe neurological impairment but the family seems very happy.

BLOOM: I was at a conference on how the devaluation of disability influences medical care of disabled children. And a neonatologist stood up and said that in her field there was an unspoken bias where doctors are willing to go to extreme lengths to accommodate a child with severe physical disabilities. But that they believe an intellectual disability is ‘a fate worse than death.’

Eric Racine: We’re aware that there are these biases and clinicians admit they exist. We’ve done some research with Canadian physicians and we get a sense that there’s a bias towards brain health, or a negative prejudice about anything that concerns the brain. That’s now documented. But how exactly it may, or may not, impact clinical decisions needs to be further investigated.

But even if those clinical biases don’t change decisions about withdrawal of life support or the kind of care offered, they can generate profound hurt in parents and even have an impact on the relationship between the parents and the child.

Parents are left to ask: ‘Am I wrong to be caring for this child?’ They can be judged as lacking common sense. Certainly in our paper we consider these biases inappropriate. When they exist, they must be recognized and reflected on and should not be imposed on families.

BLOOM: I think the principles the paper suggests are excellent. But I wonder how a very busy doctor would have time to reflect on implicit biases they have—or even know how to do that? Wouldn’t that require some kind of ongoing training and formally bringing clinicians together to discuss these issues?

Eric Racine: You’re right about pointing to this limitation. This is a first step. I think the next step for us is thinking about how we can bring these ideas closer to a clinical environment and how we can help clinicians who want to take ownership of them and discuss them.

BLOOM: The paper talks about how doctors need to respect the value system of the parents. But what if parents of a child with a very minimal disability say they won’t accept their child?

Eric Racine: I think there are situations where withdrawal of life support would be completely inappropriate and neonatologists would step in and be advocates for their primary patient—the child.

There are also times when it’s inappropriate to continue care and parents won’t let go and neonatologists have to step in and ask questions about the meaning of the care offered, especially if it involves pain, suffering and prolonging of a life that is extremely limited. There are extremes on both ends of the spectrum.

By Louise Kinross

Thursday, December 8, 2016

'A big part of my job is telling families the diagnosis'

By Louise Kinross

Dr. Melanie Penner is a developmental pediatrician at Holland Bloorview who focuses on autism. She’s the person who gives parents a diagnosis of autism in their child. Frustrated at the years’ long wait for behaviour therapy in Ontario, she had a study published in JAMA Pediatrics last month that puts the cost of that delay at $267,000 per child over a lifetime. Melanie is happiest when knitting or managing her fantasy baseball team.

BLOOM: Why did you get into developmental pediatrics?

Melanie Penner:
Growing up my mom worked as a special education teacher. I was always exposed to kids with physical disabilities, kids with intellectual disabilities, kids with autism, and I loved it. I liked science in school and went to medical school. I remember the day that a developmental pediatrician came and spoke to our class and ever since that day I never wanted to do anything else. I worked as an inclusion counsellor at Parks and Rec camps, so it’s been an ongoing theme in my life. I love to see kids participate and I love to see kids have little successes. I want to be a person who can help them get there.

BLOOM: You also did a degree in health services research.

Melanie Penner
: During my pediatric residency I found myself really interested in how care was designed and delivered. I learned that I’m a person who’s quite pragmatic and interested in efficiency. When I was in the second year of my developmental pediatrics fellowship at Holland Bloorview I decided I would do a master's degree in health services research. My daughter was six weeks old at the time, and my husband tried, in vain, to give my baby her first bottle in the Starbucks in the building while I interviewed.

BLOOM: How did you manage to juggle your fellowship, your master's and a new baby?

Melanie Penner:
I’m still not sure. I had a six-month mat leave and that’s when I did the interview. I cried the whole way home. But from where I am now, I shouldn’t have been so worried. It was a lot of work, but my daughter was in the daycare here and it was great. It made the transition back to work so much easier, on emotional and logistic levels.

BLOOM: How would you describe your job now?

Melanie Penner:
I have two clinical hats. Most of my clinical practice is doing developmental assessments for autism. So I’m giving the parents the first diagnosis. I also work in the psychopharmacology clinic with kids with neurodevelopmental disorders and complex behaviour problems. I’m a scientist in the autism research centre and I do services research for autism. Right now I have a project looking at whether community pediatricians can diagnose autism accurately, instead of families waiting months upon months to come here.

BLOOM: What’s challenging?

Melanie Penner:
A big part of my job is telling families the diagnosis of autism and helping them through the initial stages. That takes an emotional toll. I’ve come to learn recently that I can carry that with me in more ways than I think. If I’m feeling poured out emotionally, I don’t necessarily have the reserves when I get home to deal with the negotiation of getting my daughter into bath and bed. Sometimes by the end of the day, I definitely need a bit of quiet time to myself.

BLOOM: Do you do anything proactive to help yourself cope?

Melanie Penner:
I’ve taken up knitting. Knitting is my happy place. It totally diffuses the stress out of my fingers. I even knit during meetings and rounds here.

BLOOM: Isn’t it hard to follow a meeting and a knitting pattern?

Melanie Penner:
If the knitting is straightforward, it helps me focus. It’s kind of a legitimate fidget to have. There’s one person, who will remain nameless, who likes to sit beside me because she finds sitting close to my rhythmic knitting movements soothing.

BLOOM: There’s the clacking sound of the needles.

Melanie Penner:
Yes. It’s a sensory experience. What I like about knitting as well is that it helps me to be gracious with myself. If I make a mistake, I have the option, which you don’t have in life, of going back and pulling everything out and fixing it. But I’ve gotten better at just leaving my mistakes in. I call it artisanal charm, so people know it’s hand-made. It’s a good way to think about forgiving myself and going easier on myself. I’m a recovering perfectionist, so it’s a good exercise for me.

BLOOM: I’ve read articles in the New York Times about how knitting is similar to mindfulness meditation.

Melanie Penner:
I’ve read those too. Because of the therapeutic benefits I’ve had I’m going to start a knitting group for teenagers with autism. Knitting aligns so nicely with classic autistic strengths: if you look at a pattern it’s a very visual exercise to go through and knitting involves sticking to a repetitive task that others might find too monotonous. There’s the sensory experience of it. And a knitting circle has a social context but you can do it without making eye contact.

BLOOM: When will that start?

Melanie Penner:
I’m putting the materials together and I hope by the fall of 2017. We’ve applied for Centres for Leadership funding. I have knitting teachers on board, a behaviour therapist and occupational therapist to modify the program, and an adult with autism who’s been knitting for 20 years just joined the team.

BLOOM: What’s challenging with research?

Melanie Penner:
Rejection is built into the job. Most of the time you won’t be successful with grant applications. That’s been another emotional learning point for me—to learn to bounce back from those things. I’m a huge baseball fan and I’ve had to take on the mindset of a baseball player: that if you’re succeeding 30 per cent of the time, you’re an all-star. If you strike out you can snap a bat over your leg but you still have to go up to the plate next time. Life is the metaphor through which I understand baseball. That’s how important baseball is to me.

BLOOM: Do you play?

Melanie Penner:
No, I’m terrible at ball sports. But I manage a fantasy baseball team. You get together with a bunch of people and draft players.

BLOOM: What do you love about your work?

Melanie Penner:
I get to see families six months after the autism diagnosis and what’s amazing is that over that time, you see that some families are really thriving and their kids are thriving. You often leave them in this difficult state, and then six months later you get to see how their thinking around the meaning of autism has changed. It’s changed not who their child is, but how they view certain things about their child. They have a better understanding of their child and we get to celebrate the gains their child has made.

With research, rewards are a bit more clearly defined: when you get a paper accepted or get a grant, that feeling is incredible. I try to ride it as long as I can. When I found out I got a small CIHR grant for my study looking at the accuracy of pediatrician diagnosis of autism, I was crying so much I couldn’t get the words out to my husband.

BLOOM: Have your thoughts about autism changed?

Melanie Penner:
Most of what I know about autism comes from talking to kids and teenagers with autism and their parents. I don’t get much exposure to adults, but I do read a lot of literature by adults. My thinking has changed. Being a physician, and coming from a place where we think in terms of biomedical disease-based models, even though we’re trying to break out of that, this [rehab] world is so different. I see the ways that acceptance plays into things and I’ve tried to learn a lot from neurodiversity advocates. One thing I keep in mind is that the construct of autism I have now shouldn’t be the same way I’ll think of it in 10 or 20 years.

BLOOM: What drew you to this area?

Melanie Penner
: Autism captured my imagination. I think it’s the way our population thinks so differently. The way my patients see the world and express themselves is always a pleasant surprise and it challenges me and my assumptions.

BLOOM: How do you balance acceptance of disability with our desire to fix things?

Melanie Penner:
Even from the time of diagnosis, I’m trying to bring in these ideas of acceptance now. A lot of our therapies have focused on trying to give children the skills to function in the neurotypical world. The bigger work we have to do is making the world a more friendly and inclusive place where people with autism and other differences can shine and contribute in the way they want to. Often parents will ask about what they can do to make their child normal. But if the child is doing something like flapping—that’s not hurting anybody—I tell them that’s not a ‘him’ or ‘her’ problem, that’s an ‘us’ problem. I have no interest in trying to take those things away.

BLOOM: It must be hard to be the point person giving a diagnosis when the average wait for publicly-covered therapy is two and a half years.

Melanie Penner:
It’s always a difficult discussion that contributes to some of the emotional baggage I end up with. It’s a two-tiered system where families with means can pay privately to access therapy right away. We do have some access to charity funding that can be put towards private services sooner, and we’ve figured out little workarounds that we try to employ with the help of our social workers. I also have parents who seek out a lot of information on their own and implement different parts of therapy. Some parents have even trained to become behaviour therapists.

BLOOM: What are your hopes for the future?

Melanie Penner: I hope my work can help to create a more equitable future for people with autism and their families.

Melanie was the focus of this Ontario Medical Association video Putting Patients First. The photo above is a still image from the video.

Tuesday, December 6, 2016

The up and down reactions to one dad's parenting world

By Ron Bishop

Our son Neil is 14. He was diagnosed at a week old with cystic fibrosis. When he couldn’t hold up his head or sit at age one he was diagnosed with cerebral palsy and developmental delays. He didn’t walk on his own till he was 11—that was an amazing day.

It’s fair to say that Neil’s three favourite places are: a swimming pool, where he can engage in Olympic-calibre, slap-splashing; a set of stairs—any set of stairs, any size, any height, carpeted or not, anywhere, including those in buildings at Drexel University in Philadelphia, where I’m on the faculty—and the escalators at a local bookstore.

From the start of Neil’s fascination with the bookstore escalators, the staff has been kind and accommodating. My wife Sheila and I know many by name. Some days it’s almost like a scene from the classic television show Cheers, when Norm Petersen trundled in to the fictional Boston bar to enthusiastic shouts of “Norm!” Other kids have been castigated for their rambunctious escalator behaviour, but Neil rolls merrily on, up and down, laughing.

Once, when one of the escalators was shut down for repairs, a genuine look of sadness crossed the face of Tom, who like many of his colleagues has come to know what these visits mean to Neil. We improvised, of course; the malfunctioning escalator became a set of stairs. We cruised up and stepped down.

But while the store’s employees have been kind—so much so that Sheila and I sent a letter thanking them to the corporate office—it’s the range of public reactions to Neil, and his intellectual disability, that coalesced into the leaping-off point for my next book.

With apologies to the very talented people who created the hit movie Inside Out, when we go out with Neil the looks we get typically reflect:

Disgust, as if the person is thinking—but will never muster the guts to say—“how could these people bring him here?” Some sneer visibly at Neil. Some change direction to avoid any contact with him. Some act as though they might catch his challenges. Others grumble when he cuts, with no malicious intent, in front of them to get on the escalator.

Indifference is the look we most frequently experience, as if Neil isn’t even there. Maybe intentional indifference is more accurate; these folks see him, they just don’t “see” him. To be fair, it may be that they’re wrapped up in what’s taking place in their own lives—getting a book for school, for example, or trying to quiet a grouchy child.

Curiosity It’s as though they’ve come upon an animal seen only in the wild or are gawking at a museum exhibit. Kids most often display this look, although to be fair, it probably originates in a lack of exposure to folks like Neil. It’s actually a mix of wonder and…

Fear—Neil doesn’t notice it, thankfully. But Sheila and I have been brought to tears more than once by kids who cringe when they see him, as though they’ve seen a monster, and duck behind a nearby parent.

Happiness It’s heartwarming when folks express gratitude to Neil for purportedly keeping the escalator moving. “Are you helping us get to the top?” they’ll ask. “Thanks a lot buddy,” we hear now and then. Others just smile at him: some out of a sense of obligation, others to check off “was nice to a disabled person,” and still others just because they recognize that he’s a very compelling individual.

A couple of weeks before Christmas last year, a middle-aged couple who watched Neil for about an hour from a table in the café stopped us between descent and ascent and handed us a $25 gift card. They told us he was a beautiful young man—quite true—and asked that we use the card to buy him a present.

Finally, we have Emulation. Neil has inspired a small but dedicated legion of imitators, kids who watch the escalator, grasp and pretend to propel the handrails, and now and then follow us on our forays.

During a visit this past October, two young girls, probably 12 or 13, hitched about a 10-minute ride one step behind us. Others dip into the escalator shenanigans songbook, sitting on the steps, running up and down, and attempting the time-honoured “go down the up” and its just-as-exciting cousin, “go up the down.” Sheila and I cringe with fear and a little embarrassment when a kid gets in trouble with a parent or a staff member for wanting to hang out and ride.

I’d guess that for all of these folks—the nasty, the encouraging, even the kind—Neil’s presence at the foot of the escalator is unusual and unexpected. We’ve learned that families like ours, with a child with an intellectual disability, are often reluctant to go out in public.

My new book will dissect how the news media portray people with intellectual disabilities—as hopeless victims or spunky competitors who sink a basket after sitting on the bench all season. Rarely do we see people with intellectual disabilities celebrated for who they are as individuals.

A huge part of the book will be stories from families with experiences like ours. I’ve put together an open-ended survey to collect stories from parents about how their child is treated by the general public and family, and how this influences their lives. If you’re the parent of a child with an intellectual disability, please consider filling out this anonymous survey. Thank you in advance for your help!

Ron Bishop is a professor in the Department of Communication at Drexel University in Philadelphia. To speak with him about his upcoming book Holding Up The Sky Together, e-mail Ron at

Monday, December 5, 2016

Early autism therapy saves taxpayers money, study finds

By Louise Kinross

Intensive behavioural therapy for autism is expensive—over $100,000 per child. In Ontario, the average child waits two-and-a-half years to get it.

Now a new study in the journal JAMA Pediatrics puts the cost of that treatment delay at an additional $267,000 per child over a life time.

That’s because later therapy is less effective, resulting in less independence in adults and the need for more lifelong support, says lead investigator Dr. Melanie Penner, a developmental pediatrician at Holland Bloorview.

Using 2012 Ontario data, the researchers did a cost-effectiveness analysis—the first of its kind looking at autism and wait times in Canada. “We built a mathematical model to look at the probability that kids had of receiving intervention at different ages and paired that with outcomes data from the Ontario program,” says Dr. Penner. “We then linked expected gains in early intensive intervention with projections for future independence, which meant you could live independently and work in paid employment.”

Eliminating the Ontario wait, so that the average child with severe autism got therapy at 2.7 years instead of at 5.24 years, would save the government almost $53,000 a child over a lifetime, the study shows. It would save society $267,000—with family caregiver time for adult children being the biggest cost. “That gap shows the additional burden families take on when we don’t have timely access to programs,” Dr. Penner says.

The study used findings from a 2011 Ontario outcome study that showed that children who received therapy before age four gained an average of 20 IQ points compared to those who received it after. “We don’t expect programs to work for everyone, and IQ is not a perfect predictor of independence, but it is one predictor in studies looking at adult outcomes,” Dr. Penner says. She said future research needs to identify other variables.

Dr. Penner, who has a Masters in Health Services Research, says her clinical work prompted the study. “I was seeing families in my clinic six months after the diagnosis and the main issue that kept coming up was wait times, wait times, wait times. I wanted to get an idea of the impact of those wait times on the investment [taxpayers] are making. The main findings show that investing in earlier access to intervention is a good investment for governments and society: when people with autism do better and families do better, we all do better.”

Wednesday, November 30, 2016

Disabled teens crave risk, speed, freedom: Study

By Louise Kinross

Many teens love to defy authority, speed and do other dangerous things.

A new Holland Bloorview study finds that youth with the most complex disabilities are no different.

The study—published in the Sociology of Health & Illness this month—found that youth with multiple disabilities want to experience freedom, speed, risk and time alone.

For example, one young man said the safety belt on his wheelchair didn’t fit with his spontaneous personality. “My whole life, I’ve been wearing this thing,” he told researchers. “I’m the kind of person that would take risks. I don’t want to just live my life as a boring person—seeing everyone do awesome stuff and me doing nothing.” His idea of fun was being pulled in the trailer of an ATV “because they were letting me go free.”

These activities are “not necessarily what we would prioritize in rehabilitation,” says lead scientist Barbara Gibson, who is a physiotherapist.

The study looked at how settings shape what we do—with the understanding that spaces aren’t static, empty containers, but fluid arrangements of people, furniture, technologies and social expectations that can enable or restrict what happens in them.

Participants included two groups rarely studied: those who require 24-7 medical care and may use ventilators and those who have little to no speech.

Youth were observed doing two activities they chose in the home or community. During the first activity they were taught to use a camera to photograph their experiences. In the second activity, a research assistant observed and discussed the activity with them as it was videotaped it. Participants also participated in face-to-face and electronic interviews. Nineteen young people aged 14 to 23 took part.

All participants said doing practical or fun things outside their home was much more challenging than inside—because people outside the family didn’t know how to help with medical or personal needs or weren’t willing to slow down to communicate with them. Activities at home were easier and more enjoyable because of connections with family members who got into a rhythm of facilitating them.

The wheelchair was seen as something freeing—for example, allowing a participant to go to the park alone—but also constricting, because of how the safety strap suggested the user was at risk or somehow lacking.

Because many activities for the youth relied on constant support from a parent, breaks from this connection—for example, when a personal support worker, friend or family member came by to visit or go out with the participant—was interpreted as freeing.

Rather than valuing independence over interdependence, the researchers suggest rehab clinicians look at how human connections in specific spaces enable positive activities and experiences. “…At times facilitating a dependency may be a more fruitful rehab goal than enabling independence,” they write.

For example, they note that while using a voice device will give a young person a higher rehab score in “independent communication,” many participants communicate much more efficiently and less laboriously through a parent or family member.

Tuesday, November 29, 2016

'A Matter of Dignity' wins 2016 disability reporting award

A Minneapolis Star Tribune investigation into how hundreds of adults with developmental disabilities are segregated and neglected in a Minnesota system of sheltered workshops has won first prize in the 2016 Katherine Schneider Journalism Award for Excellence on Reporting on Disability.

A Matter of Dignity tells the story of adults who spend their days collecting trash for $2 an hour and who have been sent against their will to live in remote, dangerous group homes that are described as prison-like.

Reporter Chris Serres accepted the award of $5,000 at the Cronkite School last night.

One of the judges, Jennifer Longdon, said the series was chosen for "its exhaustive chronicling of the experience of adults with disabilities in Minnesota, from the indignities of sheltered workshops to the hopeless years-long wait for vital services that never arrive. These memorable stories were masterfully told while preserving the dignity of the individuals profiled."

The Schneider Award is the only journalism awards competition devoted exclusively to disability reporting. It's administered at the National Center on Disability and Journalism at Arizona State University's Walter Cronkite School of Journalism and Mass Communication.

Friday, November 25, 2016

A big idea: Mobility for all

By Louise Kinross

It’s a tough business problem: how do you commercialize a medical product for a niche market that can’t afford it?

For 10 years, Holland Bloorview scientist Jan Andrysek envisioned millions of amputees in the poorest parts of the world regaining their mobility and livelihood with the all-terrain prosthetic knee he invented and developed.

But it wasn’t until American social entrepreneur David Green got involved in 2013 that he found a way forward.

This year Jan and David—along with Emily Lutyens and Brandon Burke—founded LegWorks, a socially-minded business that aims to make high quality prostheses available to amputees worldwide regardless of their ability to pay.

The all-terrain knee is its first product. The knee is sold at market rates in 10 high-income countries so that it can be sold at, or near, cost to non-government organizations, hospitals and rehab clinics in 10 low-income countries. They then provide it at low or no cost to consumers.

“We’ve developed a product for people in the developing world that is also innovative and useful in developed countries,” Jan explains.

The all-terrain knee uses a proprietary locking mechanism that locks the knee when the user extends his leg, preventing falls that occur with traditional knees that require people to place weight on the foot before stabilizing. “Amputees are prone to falling,” says Jan. This is because traditional knee joints lock when the user puts weight on them. “But if they don’t place weight correctly, which happens, the joint may not lock, causing the user to stumble or fall.”

The all-terrain knee is a rugged, high-performance waterproof knee.

About three million people worldwide have above-knee amputations. Most live in the developing world, where less than 15 per cent have a prosthetic. “That means they can’t function,” Jan says. “Most jobs there require manual labour, so they’re unable to work and support themselves or their families.”

Jan published a study this summer of 10 young adults in Chile who wore the all-terrain knee for two years and compared it to their old prosthesis.

Based on walking tests, heart-rate monitoring and questionnaires, Jan’s knee showed a number of advantages. Study participants found the knee improved their stability while standing and walking and made it easier to get around: when wearing the new knee, they expended 40 per cent less energy than they did with the traditional prosthesis. The new knee also supported natural movement in the pelvis, whereas the weight-activated knee caused a pelvic tilt that could create long-term musculoskeletal problems, Jan says.

Nine out of 10 study participants chose to continue using the all-terrain knee following the study.

“In places such as Cambodia, we aim to provide the knee at, or near, cost to non-government organizations who will provide it to low-income individuals,” Jan says. “In developed countries, we provide the knee at prices that coincide with local reimbursement systems.”

The all-terrain knee is sold in Zambia, Colombia, Haiti, Guatemala, Turkey, India and Cambodia. It’s also available in North America, Australia, Europe and Russia. Almost 500 knees have been sold.

Jan notes that while bionic devices based on microprocessors cost over $150,000 in the Western world, most amputees in poor regions can’t afford “the most basic device that doesn’t work well. There is such an inequality.”

Jan says NGOs love the knee because “the technology works well and patients want to keep using it.” One of the challenges in getting the knee to people in the developing world is a lack of prosthetists who are trained to fit them.

Three years ago LegWorks “lucked out with seed funding of $100,000 from Grand Challenges Canada,” Jan says. “To get the funding we had to present how we would translate the technology. Grand Challenges put me in contact with the social entrepreneur David Green.”

Jan learned about David’s model of compassionate capitalism. David helped create a company in India that manufactures artificial lenses used in cataract surgery at a selling price of $4 a pair as opposed to $150 in the U.S. This enables a local hospital to perform over 300,000 free or low-cost cataract surgeries each year.

Jan says he’s excited about advancing science to meet the needs of amputees. “In developing countries people with disabilities are looked down on and excluded,” Jan says. “This leads to even greater poverty. Providing them with a well-working leg gives them the opportunity to regain their lives.”

Photo above by Patrick Brown © 2014 Panos

Tuesday, November 22, 2016

Research day challenges dominant ideas about human value

How ironic that on the day Holland Bloorview research head Tom Chau encouraged us to "push against typifying perspectives" in our work, CBC's The Current was interviewing bioethicist Peter Singer on his view that parents should not be "stuck with having to look after a severely disabled child."

You can watch our Bloorview Research Symposium live-streamed here, and it is well worth a watch. Louise

Monday, November 21, 2016

Some thoughts on acceptance

By Louise Kinross

One of our staff is doing a workshop for parents on acceptance. She asked me for resources and I recommended these BLOOM pieces below. But first, a story from Adrian Anantawan, an internationally recognized violinist and former client at Holland Bloorview. 

In university, Adrian chose to stop wearing the prosthesis he'd worn all his life (he was born missing one hand). He said the prosthesis was hot and heavy and didn't make it easier for him to do things. "The function was more of an image issue than anything else, and it lost its function as I became more accepting of my own body, and how I looked to everyone else," he told me.

1. 'Normal:' It's not all it's cracked up to be An interview with Dr. BJ Miller, a palliative care doctor who became a triple amputee after an accident when he was a student at Princeton. 

"I wouldn't try to convince parents not to worry, or not to wish that their child had an easier go of things, but I would say over time spend your energy on finding things to celebrate in your child's differences. Turn your attention towards the differences, instead of away from them, and who knows what will come, either lessons or some weird new talent. Divorce yourself from the typical measures of success in life. It's a harder road, but a way more fulfilling one.

"I have a window into the inverse of this in my work. I see people all the time who do have a ridiculous wealth of conventional success and there's a lot of misery in there because they've never embraced their own internal metric, they've never done their own homework. Part of getting there involves letting go of the idea that 'if I just had this or that' or 'if I just looked like this or that' things would be perfect. In fact, it's my experience that it's the opposite."

2. Jean Vanier on accepting who we are An interview with philosopher and humanist Jean Vanier, founder of L'Arche.

"The danger in our society is to pretend that we're strong and powerful. We can do things, but we are all human beings. We were born in weakness and we will die in weakness. We were born to grow strong but also to grow weak. Discovering our weaknesses is about discovering who we are. The fundamental thing for human beings is to accept ourselves as we are, with our strengths and also with our weaknesses. And weakness is not something bad. It implies: 'I need your help.' That brings us together, because I'm not able to do everything myself. I'm calling out: 'Can you help me?' Fundamentally, we human beings, what we need most deeply is to know that we are loved and accepted."

3. Worried your not a good-enough parent? Barb can help Interview with Barbara Fishbein, a social worker at Holland Bloorview for over 30 years.

"We’re having a lot of conversations with parents about the importance of play
and leading a normal life. I think parents need to be cognizant of over-programming, over-medicalizing and over-therapizing. They need to look at the amount of time their child is spending in therapy. If your child was a typical child, would you want them spending that much time in a rehab centre or hospital? 

"Can you let go of some of that pressure on your child and yourself and be able to be with your child and appreciate them for who they are? 

"I also strongly belief in the emotional life of a child and when we focus so much on physical rehab, which of course is important, we may forget to pay attention to the child’s emotional wellbeing—including how to nurture a feeling of acceptance and belonging."

4. One humanity, one voice A story about a talk by Far From The Tree author Andrew Solomon at the Toronto Reference Library. 

Solomon [refers] to the way minority groups have historically split off from each other in their advocacy efforts. People with physical disabilities don't want to be identified with those with intellectual disabilities, or people with mental illness object to being compared to those with autism, or someone who's transgender doesn't see any common experience with a person with dwarfism. As he notes in his book, the parents of child prodigies didn't want to be included in a book with families of severely-disabled children, people with autism insisted that those with Down syndrome had lower intelligence than them, and deaf people didn't want to be associated with people with schizophrenia.

I think Solomon has nailed the problem of discrimination within the disability community—and how it fractures all of our attempts to achieve equality as humans. 

"Being blind and being gay are different, but having a selfhood that others perceive as undesirable is identical," Solomon writes in Far From The Tree.

5. There's a lot being written about self-compassion now, which is linked to acceptance. There's a Centre for Compassion and Altruism Research at Stanford Medical School. This past weekend CBC's Tapestry program interviewed Thupton Jinpa, a Tibetan Buddhist monk who developed a course in Compassion Cultivation Training at Stanford. He's also published a book called A Fearless Heart: How The Courage To Be Compassionate Can Transform Our Lives.

Monday, November 14, 2016

France upholds ban on Down syndrome ad: Children too 'happy'

By Louise Kinross

In an extraordinary decision, the Council of State in France has upheld the decision of the country's TV regulator to prevent this video, whose message is that children with Down syndrome can be happy, from being seen on French TV.

The ad, launched by Italy's CoorDown and Satchi & Satchi for World Down Syndrome Day in 2014, has been viewed on Youtube over 7 million times. It won six awards at the 2014 Cannes Lions International Festival of Creativity.

The idea for the ad came when CoorDown received an e-mail from an expectant mother whose child had been diagnosed with Down syndrome: "I'm scared," she wrote. "What kind of life will my child have?"

The ad, called Dear Future Mom, is a response from a number of children and teens with Down syndrome. "Your child can be happy" is the message. "He'll be able to hug you" says one young man. "He'll be able to go to school" says another young woman, "and work and earn his money" say two girls.

In June of 2014, the French TV regulator said it was "likely to be controversial" and was not "a message of general interest." Earlier that year several French channels had aired an excerpt free of charge at the request of Down syndrome associations.

According to Fondation Jérôme Lejeune, a French Down syndrome research and advocacy group, the original decision to censor the ad came after complaints from two women who had terminated pregnancies due to a prenatal diagnosis of Down syndrome. They issued a news release last week suggesting the Council of State wanted to hide pictures of children with Down syndrome who look happy.

The TV regulator considered the ad's message likely to "disturb the consciences of women who, in accordance with the law," had chosen to have abortions, this article in Le Monde reports.

Jérôme Lejeune had asked the Council of State to intervene on the regulator's ban. It says it will bring the matter to the European Court of Human Rights and argue that people with Down syndrome have a right to express their happiness without censorship.

Tuesday, November 8, 2016

Hardships, silver linings and me: A diary of rehab

By Alivia Osland

I’ve been in the hospital for almost three months because I’ve been diagnosed with Guillain Barré Syndrome.

The lower half of my body was paralyzed (my whole body could have been paralyzed, so I’m considered lucky). I had problems with my breathing and swallowing and what wasn’t paralyzed was numb and tingly and extremely weak. I also had an ongoing headache for the first month.

At the beginning of this journey I was miserable and hurting—mentally and physically—and dazed by just how surreal this really was. 

After a few weeks of a little progress, things went downhill. My breathing was affected. At that point I was throwing up quite frequently and they thought I was aspirating some of the vomit. Then my oxygen levels went down to 30 per cent (they’re supposed to always be above 90 per cent) and the doctors thought it would be best if I went to the pediatric intensive care unit.

Once I got into the PICU everything was a blur. Shelly—my nurse—said she was giving me a nasal feeding tube right away. That crushed me. For a couple of weeks, doctors had said it was a possibility, but I never thought it would actually happen. So the feeding tube went in and the oxygen prongs were next. Other than the feeding tube, the oxygen prongs were the hardest to get used to. I didn’t think they were helping me. It felt like it was harder to breathe than before. I despised them.

The first three or four days in the PICU were the worst. I was throwing up what felt like every five seconds and it took hours to get my breath back. My throat felt incredibly raw because of the constant throwing up, the feeding tube and the continuous high-flowing oxygen going through it.

That was when I wanted to go home the most. I was getting an artery line, I couldn’t eat or drink on my own, I couldn’t breathe on my own, I couldn’t go to the bathroom on my own (I HATED the bedpan) and I couldn’t move my legs at all.

It was nuts that I was actually immobile and couldn’t do anything. I didn’t know if it was going to get worse than it already was. Would I need a catheter? A respirator? Would it get that bad?

Initially I would wake up and forget about everything, for a minute. Then when I remembered, my mood just fell and it was awful. Eventually I got used to it and didn’t forget anymore.

It felt like it would never get better, but it did. They took the artery line out and I was in a bicycle study. What is a bicycle study, you might ask? It’s a study where they bring a specialized bike to the end of your bed and they strap your legs in, extremely safely. Then the bike would start moving on its own with the choice of higher speed or higher resistance (if you were peddling).

The idea behind the study was that if you got some exercise while you were sick, you could recover and get stronger faster. I think it worked.

I was only in the PICU for 10 days and then I was back on the unit. I left the oxygen prongs behind and felt a lot better.

Soon after I got comfortable in my new room, my occupational therapist Kate came into my room to do some feeding tests. Purees went well but liquids not so much. I coughed quite a bit on the milk and I was really disappointed. I had my appetite and thirst back, but was still unable to please my cravings.

Next I went to the therapy room to try standing, after countless sessions of sitting at the side of the bed. I was (figuratively) jumping for joy! I got wheeled up to the parallel bars and had Jill (physiotherapist) on my right, Kate on my left and Barb (physiotherapist) in front of me. We were going for it! With both my hands on the armrests of my wheelchair I pushed myself up. I was standing for the first time in weeks! I was extremely proud of myself.

We did that for the next few days and it was getting a lot easier. I wanted to try walking. Jill and Barb thought it was a good idea so we gave it a shot. I stood up, steadied myself and then took a step and then another and then another. I was walking! Holy moly, I was actually walking. I sat back down filled with optimism for the next few weeks.

As time progressed, so did I. Now I could walk from one side of the room to the other and I could also do a transfer from my wheelchair to my bed with a walker. No one could believe the progress I was making (not even me). Things were looking up! I thought I must be going home soon. But I thought wrong.

One morning Jill came into my room for physiotherapy and I asked her what I would have to do in order to go home. That’s when she brought up Holland Bloorview in Toronto. I was confused. I thought I’ve come a long way, why would I have to go to another hospital? She went on about how at Bloorview they’re more focused on rehab than acute care. I was understanding more now, but how much longer would I be hospitalized?

Jill told me it could vary between three weeks and two months. Seriously? Another two months? I held in my tears as best as I could. Then my dad came in with my speech language pathologist Sara and Jill filled them in on our conversation. They all looked at me with pitiful looks and I couldn’t hold it in anymore. The tears streamed down my face. I couldn’t control them. I just wanted to go home. I couldn’t handle another two months. But soon enough it was moving day.

On August 23, an ambulance took me to Holland Bloorview. I have to admit, it was pretty cool riding in an ambulance. It didn’t take long and soon we were there. Holland Bloorview was very different from McMaster Children's Hospital, like wow!

At Bloorview you have a schedule for the week. There’s a Bloorview school, a lounge where everyone eats, and you can go home for weekends. There are family team meetings where you, your family, your social worker and your team of therapists all have a meeting and discuss your goals and progress. During your first team meeting (seven to 10 days after your arrival) they will give you an estimated discharge date.

My first day was busy, busy, busy. I met loads of new people. It was a little overwhelming, to be frank. I met all my therapists, my social worker and my head nurse. I was exhausted and in desperate need of a nap by the end of it.

During the next few weeks, I was progressing like crazy. I came to Bloorview being able to stand on my own for 20 seconds, tops, and now I was using a walker to get around. This was so exciting!

My physiotherapist Alanna was working me really hard! Which was great! Soon she was leaving to get married so I was getting a new physiotherapist for the time being. I wanted to surprise Alanna when she came back, maybe even being able to walk without any equipment? Hopefully.

When school started I was alone most of the time because my parents had commitments they needed to fulfill. The nurses kept bugging me about eating in the lounge or going to recreational therapy. I really didn’t want to. Socializing wasn’t my strong suit and I was incredibly shy. They repeatedly said that socializing is therapy too, but I was socializing with the nurses and my family. So eventually they got off my back.

Speaking of school, I’m in a Grade 6 to 8 class and my teacher’s name is Anne-Marie and the educational assistant is Judy. 

When I first started, I hated it, to be completely honest.

My first thought was: “How could school get any worse? Have it in a hospital!” I wanted to go to MY school, where all my friends were. But I sucked it up and it wasn’t all that bad. Anne-Marie and Judy were awesome and I pretty much did my own thing most of the time. It was going pretty well!

With my new physiotherapist Andrea we were doing all sorts of crazy things like jumping, running and walking along a balance beam while squatting and reaching. It was nuts! I really enjoyed it and I was getting pretty good at it too!

We also went on daily walks with activator poles. Walking with the poles was getting a lot easier, so Andrea did the six-minute walk test on me. The test determines whether you need a walker anymore by testing if you can walk 500 metres in six minutes. I went 523 metres!

The next day I was independently walking around the hospital. I could LITERALLY jump for joy now and you bet I did!

Alanna was back and boy was she happy! I gave her an update on everything I could do. I could stand on one leg for a minute, I could jump, I could run and so much more! She was blown away! That day I climbed four flights of stairs, jumped rope, and did 'suicides' and basketball drills all while running! I was having a great day! I could run, I was feeling optimistic about discharge and they were weaning me off my pain medication. I was starting to see the light at the end of the tunnel.

Today was the day of my family team meeting and I was really hoping I'd be able to go home sooner than anticipated. I crossed my fingers. Once we were all in the meeting room (Alanna, Sarah—occupational therapist, Patrick—my social worker, Katherine—my child life specialist, Anne-Marie and my family), Patrick told us that my school was on the telephone line and so was the outpatient therapy clinic I would be attending at Kids Ability.

The meeting started off with how I’m doing medically (which was fantastic), then we began to discuss my physical capability. Alanna said I was doing awesome and that there were still some minor things to work on but overall I was doing great. Next, Sarah said that my strength is definitely coming back and that I won’t need any outpatient occupational therapy (yay!).

Then we got onto the topic of how I was coping with my hospitalization. Everyone said I was coping fantastically. I tried really hard to focus on the positives, so I’m glad it was noticed.

Soon after, my vice principal mentioned some strings they could pull to make the transition back to school easier for me. Things like having a buddy walk with me to class and carry my books, leaving class early so the hallway isn’t so busy, having a chromebook if writing was too tiring and being able to have a rest if needed.

I didn’t think all that was really necessary, and neither did Alanna or Sarah. So we ended up just going with the buddy, as a precaution. Finally, we came to the discharge aspect of the meeting. Drumroll please… I’m going home a week early!

Out of nowhere the waterworks came gushing out. They were out of control. It just dawned on me that I was going home NEXT week.

That’s so soon. I just started connecting with some of the people here, like my roommate and other clients. I just got comfortable with eating at the lounge, going to recreational therapy and socializing. But now I’m leaving.

Two days before my discharge date I realized that I didn’t really want to leave. I was used to everything here at Bloorview and I didn’t want to have to deal with such a drastic change all over again. Plus, I made friends that I may never see again and it’s hard to be okay with that. I’m hoping we stay connected even though we’re so far away.

But I need to remember that leaving is good. It means I got through the most difficult thing I’ve ever had to deal with and I’m proud of myself. I also can’t forget about my friends back home, I honestly cannot wait to see them.

This journey sure has been difficult, but there are positives. I’ve made friends I would have never gotten the chance to meet otherwise and I’m coming out of it with a whole new perspective on life. I’m so much more thankful for the little things now. 

To other kids going through something similar, I would say keep your head up and focus on the positives! That’s what saved me from falling into a pit of sadness. Sure, I was sad, but it could have been worse. It may seem like it doesn’t ever get better, but it does. It always does. It can really suck, but when you’re better you feel like SUPERWOMAN. Just about walking or running semi-fast or maybe even pushing yourself in the wheelchair. Try not to let it get you completely down because there really are some positives about the whole situation. I made friends that I still talk to everyday and the nurses can be GREAT. They’re just great people. So find the positives in a really big negative. 

Friday, November 4, 2016

How one mom embraces a new life in Canada

By Louise Kinross

In 2013 Sharda Ali-Ramjattan moved from Trinidad to Toronto with her daughter Selina, 9, in order to access better health services. Her husband Danny and son Saeed followed two years later. Her daughter Selina, now 12, has a rare genetic condition related to the TUBB3 gene that was only diagnosed recently. Sharda talked to BLOOM about why they made the move.

BLOOM: Why did you decide to move to Toronto?

Sharda Ali-Ramjattan: So that Selina can have the resources and treatment she really needs. We want to help improve her quality of life and to help her gain whatever independence she can, no matter how minute. At the time, Trinidad doesn’t have the treatments and facilities we wanted for Selina. There was only one school program we liked, but Selina couldn’t go there because the children had to be able to do their own self-care. The schools for children with disabilities were private and expensive. Selina had never been to school before coming to Canada.

We hired a nurse or workers during the day in Trinidad, and we worked in close proximity to home so we could check in on her. From 2007 to 2012 we came to Toronto for two months every summer to get her private physiotherapy. We stayed with my sister, who lives here. Selina had therapy once or twice every day. In Trinidad the only physio offered through a hospital was once every three months.

BLOOM: What other things can you access here, that weren’t available in Trinidad?

Sharda Ali-Ramjattan: Almost everything. Selina never had a wheelchair in Trinidad. Here she has a wheelchair, ankle-foot orthoses, dental and vision care. She sees a developmental pediatrician and has been seen by augmentative communication. She’s also seen physical and occupational therapists.

BLOOM: Tell us about Selina.

Sharda Ali-Ramjattan: She can’t walk or talk, and she’s intellectually delayed. She has a seizure disorder and suffers with scoliosis. She wears AFOs. She doesn’t speak and she shows no interest in communicating.

BLOOM: Are there ways that you can read how she is feeling?

Sharda Ali-Ramjattan: Yes, we understand her. If she’s irritated or frustrated, or something is happening that she doesn’t like, she’ll pull on the back of her hair. If she’s excited and happy she will bite on her hand. If she’s hungry she will put her hand in her mouth and make what we call a ‘froggy’ noise. We can understand the tone of her babble. If she’s carrying on, she’s upset or quarreling. And then sometimes her tone is very loving and she wants to hug and kiss you.

BLOOM: What does Selina like?

Sharda Ali-Ramjattan: She loves music. She has rhythm and will dance with the rhythm. She likes to drive around and be outdoors. She loves her family. She likes nice food and to be on the playground. She likes swimming and sledge hockey.

BLOOM: How is disability viewed in Trinidad?

Sharda Ali-Ramjattan: When we lived there Selina was smaller and she was in a stroller, so her disability wasn’t as noticeable. We went back to visit in March and now she’s in a wheelchair. We take her everywhere with us and people would stare. It was almost like what we were doing was offensive. They keep people in wheelchairs inside, hidden away from the world. Very few places are wheelchair accessible. That made me even more sure that we made the right decision in moving here.

BLOOM: What was the most difficult part of moving here?

Sharda Ali-Ramjattan: I came here alone, because we were applying for permanent residence and we didn’t know what the outcome would be. That was one of the most difficult things. I only have my sister here and most of my family is back there. You miss where you grew up. We had our own business and a fantastic life in Trinidad. But we had to sacrifice that for Selina. I believe Selina was given to us by God, and we are responsible for her and need to do everything we possibly can, with whatever resources we have, to make sure she gets the absolute best care.

In Trinidad we both had careers. Here, we made the decision that whoever got a better-paying job would work, and the other would stay at home. Right now I am with Selina.

BLOOM: Was there anything that helped you adapt when you first came here?

Sharda Ali-Ramjattan: Selina goes to the Scarborough Village Alternative Public School. It has a mixture of regular and disabled kids. I volunteer there, and I learned a lot from them. The educational assistants and teachers helped me when I was a single parent living here alone. I learned how to handle Selina when we go to the mall or the park and how to handle changing her. I go on field trips with them. I learned to call facilities way in advance to find out how accessible they are, and to see if there would be an attendant there to help me. Sometimes we are able to get special parking.

BLOOM: You are a family leader at Holland Bloorview. Why did you get involved?

Sharda Ali-Ramjattan: In Trinidad, my husband and I were always busy with our careers and we had limited time to volunteer. When I came here and didn’t have permission to work, I had time when Selina started school. We were at an appointment at Bloorview and my husband, who was visiting, saw one of the Family Leader cards and said: ‘Why don’t you apply to this?’ We wanted to give back something. We came here and have received so much—so many services and treatment and guidance. It gave me an opportunity to give back in a true way.

BLOOM: What do you enjoy most about being a family leader?

Sharda Ali-Ramjattan: I enjoy getting a different perspective on disability as a whole and meeting all of these wonderful people who dedicate their time to help children and people with disabilities. Where we came from, that was foreign. I enjoy the enlightenment—meeting different people and getting a broad perspective—and the focus and commitment of each person. It’s really encouraging as a parent.

BLOOM: You sit on the Research Family Engagement Committee (RFEC). What is that like?

Sharda Ali-Ramjattan: I was very hesitant to join the RFEC because I had absolutely no experience with research. But Lori Beesley thought that I would be a good fit and so I agreed to try it. At first I was intimidated being surrounded by such great minds, and wondered what I could contribute. But I quickly learned that my contribution as a parent of a child with special needs was, in fact, very valuable. And I can represent other families who are not able to participate.

BLOOM: Selina requires a lot of care. How do you take care of yourself?

Sharda Ali-Ramjattan: Physically it does take a toll, and sometimes I do feel burned out. I do things that make me happy. While I’m in the kitchen cooking, I put on music according to my mood. I’ve already started looking at Christmas shows when I need a pick-up. Every night we look at a Christmas movie. Sometimes when my husband and I take Selina down to the bus, afterwards we’ll walk over to Timmy’s and have a coffee. My husband and son are a great support. 

We don’t have a lot of money, so I go to the dollar store and I find things to decorate my home and make it a nice place. I decorate for Thanksgiving or Valentine’s day. It changes the atmosphere. When Selina brings home stuff from school I put it up in my dining room.

Five mornings a week, when Selina is in school, I go to the gym and do whatever class they have: Zumba, yoga, spin. When I first went to the gym they asked me what my goal was and I said: ‘To build my strength so it can help me to manage with my growing daughter, and to keep up my health.’ I have bad back problems. It’s great to go out and meet people and I try to take something away from each of these experiences. It raises your self-esteem and confidence and that’s the feeling I want to emit to Selina. I don’t have money for a personal trainer but I get ideas from other people at the gym and I buy magazines.

There were times when I was first here with Selina when I wanted to give up. I was sad and depressed. But we stuck it out. Positive thinking can take you a long way. You have to see the beauty in what you have. You have to appreciate what you’ve been given. I like to have happy things around me.

BLOOM: Do you ever get respite care for Selina?

Sharda Ali-Ramjattan: No, we don’t do that. If I’m away from her I miss her. I do find it helps to have a personal support worker come while I’m there. I can enjoy the time with her but the worker can give her a shower. I look at everything I do with Selina as time to bond with her. If I’m sitting with her and feeding her, I don’t just give her food. I talk with her, I tell her I love her. I communicate with her and she will communicate with me. I make it an experience. I think of things that we all enjoy. Last night I got this e-mail about seeing the tree lights at Nathan’s Phillips Square. It gives me something to look forward to.

I depend on God a lot. I turn to him. That’s my one true relief.

Sharda Ali-Ramjattan would like to start a parent support group for families of children with TUBB3-related disorders. Please e-mail her at