Wednesday, February 15, 2017

Dress rehearsal

By Louise Kinross

My son is taking part in an interactive play called What Dream It Was at the Miles Nadal Jewish Community Centre this weekend. He is the flying jokester (above), one of the creatures in a magical forest inspired by Shakespeare's A Midsummer Night's Dream. He will be part of a shadow performance and lantern parade, assist at the potion-making station and sneak around to stick messages on people's backs (the jokester part). 

This is a fabulous arts program that was provided free to participants aged 18 to 30.

It's a partnership between the Ahuri Theatre, the Bottom's Dream Collective and Miles Nadal JCC. 

Thursday, February 2, 2017

With mind-reading device, 'locked-in' people say they're happy

By Louise Kinross

Patients with no control over their bodies were able to answer questions with a brain-computer interface that learned to read their mental “yes” or “no” in a groundbreaking study published in PLOS Biology on January 31.

The four paralyzed patients with amyotrophic lateral sclerosis (ALS), who are described as being "locked-in," learned to answer personal questions like “You were born in Berlin” and open-ended questions like “Are you happy?” by thinking “yes” or “no.”

The scientists were able to detect distinct changes in blood oxygen levels that corresponded with each person’s “yes” and “no” response using near-infrared spectroscopy. The device, which sits on the person’s head like a swim cap, emits near infrared light into the brain and records returned light, tracking changes in blood flow that relate to brain activity.

Patients completed between 20 and 46 sessions over many weeks with an accuracy of above 70 per cent with questions with known answers, like “Your husband’s name is Joachim.” Over time the system gets better at reading each person’s brain signals.

In what was reported in news stories as a surprise, three answered “yes” to “I love to live” and “Are you happy?” The fourth patient wasn’t asked these open-ended questions because her parents said her emotional state was fragile.

Lead investigator Niels Birbaumer, a neuroscientist at the Wyss Center for Bio and Neuroengineering in Geneva, said the patients and their families were “excited” to communicate after as many as four years of silence, and to know that their loved ones wished to remain alive on ventilators.

In an email interview, BLOOM asked Dr. Birbaumer if the results suggest that assumptions that non-disabled people make about life with severe disability being “not worth living” were wrong.

“Yes,” he wrote back. “They are utterly wrong. Many papers prove this.”

He said the findings indicate that people are much more able to adapt to disability than we expect.

In the paper, the scientists wrote that the three patients who were asked questions about quality of life, like "Are you happy?," repeatedly responded "yes, indicating a positive attitude towards the present situation and towards life in general."

The patients all lived with their families at home.

Photo by the Wyss Center

'Passport' helps parents plan move from hospital to home

By Louise Kinross

A parent who spent 16 months at her daughter’s bedside at Holland Bloorview has given a gift to other parents of inpatients.

The Transition Passport is a binder that helps parents organize their child’s health information and plan for the extensive equipment and supports they may need to move back home.

The idea came from Sadia Qureshi, whose daughter Zoya had been a healthy six-year-old until she woke one morning seizing. After two months in acute-care, where she continued to seize and was intubated, she came to Holland Bloorview.

“We had no idea where we would go from here, that there would be life after Holland Bloorview,” Sadia says.

The passport organizes what parents need into sections: checklists of equipment and medication; funding sources and school planning; a place to record important dates, keep therapy schedules and take team meeting notes; and a holder for business cards for key staff who work with your child.

“As a parent who had never been through this, I didn’t know what equipment we would need at home, or even that funding was available,” Sadia says. “I didn’t know that schooling for Zoya would be a choice. I didn’t know it was possible to live in your home with support. The passport has checklists you can go through with your physiotherapist or nurse or social worker to help you plan according to your child’s needs.”

The process of moving home with Zoya was “very difficult, long and not easy,” Sadia says. She often didn’t realize that she needed certain things until she took Zoya home for short trial stays. “It’s hard to know what to expect. The passport will help parents pre-plan, so it won’t be as stressful or take as long.”

Sadia worked with a discharge steering committee at Holland Bloorview to bring the binder to life.

“Being part of this group was a wonderful experience,” she says. “I shared everything—what was great about our transition experience, what we need to work on, and what I think will be most appropriate for parents.”

Anna Marie Batelaan, social worker on the brain injury rehab team, says families “are finding it extremely useful as a way to keep organized and keep all of their documents from acute care and here in one place. For a lot of them the health care system is new and foreign. Many families come in with a shopping bag full of reports and they have trouble laying their fingers on what they want to show you. This binder gives them a framework for keeping it all in one place. They keep reports, home programs and medication lists in there. It’s one location where you can put everything. I have families who have moved home who continue to use it as outpatients, so they don’t have to keep track of everything in their own head.”

The Transition Passport team received the Sheila Jarvis Impact on Client and Family Centred Care Award for 2016. You can download your own copy or ask your social worker for one.

“Our goal is that this will assist families in partnership with their clinical team—not just with organizing information, but with helping them prepare for meetings and ask the questions that are important to them,” says Elaine Widgett, interim senior director of inpatient rehabilitation.

Wednesday, January 25, 2017

A mother wishes her son's cancer 'never comes back'

By Louise Kinross

Noah, 1, has blonde hair that stands up in exuberant spikes on his head. He loves to smile. When his dog licks his head, he giggles. If his mom Ivona Novak tells him not to go near an electrical outlet, he laughs and moves faster. He takes great joy in eating croissants, which he calls ‘Cru Cru.’ Only his mini-wheelchair hints at the cancer he was diagnosed with at less than three months.

Noah was successfully treated with chemotherapy. But the cancer came back in his spine, and he had to be treated again. He now has a spinal cord injury. “The doctors said they’d never seen a case of neuroblastoma like this in a kid under 18 months,” Ivona says. Recently Noah received physical, occupational and speech therapy for three months in Holland Bloorview’s day program. We talked about their journey.

BLOOM: What are Noah’s favourite things?

Ivona Novak: He likes to army crawl. He’ll take a car and hit it and then chase after it all over the house. He loves coming here. He loves attention and when people talk to him he’s all giggly and smiley. He loves Keith.

BLOOM: You mean Keith Adamson?

Ivona Novak:
Yes, he always plays with him.

BLOOM: How is Noah doing now?

Ivona Novak: He’s in remission. He has an incomplete spinal cord injury from a tumour. His chest and up is functional and he has use of his arms, but he has no functional use of his legs. Before he came to Holland Bloorview he couldn’t sit on his own, move from lying to sitting, or army crawl. He was fully dependent on me. The therapists here were fantastic at using toys to try to get him to do different things, and he’s made remarkable improvement. It’s incredible how much strength he has in his upper arms. That’s made my life easier and made him so much happier.

BLOOM: You mentioned you liked our therapeutic playroom

Ivona Novak:
It helped him become more comfortable with people. He was scared of adults because of the poking and prodding in the intensive care unit and wouldn’t let anyone else pick him up. Having adults who were just going to play with him helped him be more confident and mobile. He was able to make friends with kids who are more like him. I had been worried about how other parents and children in the community might respond to him. The playroom was a safe environment without any judgment. That experience gave me the confidence to take him to our Early Years Centre.

BLOOM: That's great. Did you have any experience with serious illness prior to Noah’s birth?

Ivona Novak: No experience. It was such a huge learning curve. I used Google so much.

One thing I learned is a parent’s intuition is better than a doctor’s. Before we knew cancer had come back, I kept saying something was off. The oncology unit said they couldn’t see anything and thought he was teething. I took him to emergency and they sent us home that night. The next morning he hadn’t moved from the position I put him in and he hadn’t peed overnight. We went back to emergency and I said ‘Something is terribly wrong, he’s not moving his legs.’ Finally that night they did an MRI and said there appears to be a tumour blocking his spine.

BLOOM: How did you cope with such drastic swings in Noah’s condition?

Ivona Novak: Your baby is in ICU, and you know not everyone gets out of ICU. We were a crying, giant mess. I needed to sleep, but when I lay down, I couldn’t. We called our doctor for sleeping pills and my husband was on his drugs and I was on my drugs—to survive.

BLOOM: What advice would you give other parents in similar situations?

Ivona Novak: You have to take it day by day, which is hard. We got big pieces of paper and whenever there was an improvement, or he did something good, we’d write it down and hang it up. So there was a room full of hanging papers to track progress and help us feel better. The other thing I'd suggest is to really advocate for your child if you’re not satisfied with an answer, or with what someone’s doing. No doctor or nurse was offended when I came with more questions or did my own research.

BLOOM: Did anything else help?

Ivona Novak: I used to meet with Val Lusted, the social worker here, once a week. She was fantastic. It was nice to have an hour where Noah is not with me. It was nice to rant and put my thoughts on the table.

I follow a very active spinal cord injury forum called the CareCure Community. There aren’t many people with kids with spinal cord injury. This is a forum of mostly adults that’s hosted at a university and there’s a nurse that joins in on discussions. I heard about a Shriner’s program in Chicago on this forum. They’ve seen some kids as young as Noah and we’re going there for two to three weeks in March. It’s a non-profit and they will cover the costs and our airfare. They have equipment there—like the Lokomat—for kids Noah’s size.

The more I’m immersed in this community, the more I realize you have to do your own research. Every person has a piece, but they don’t have the whole picture.

BLOOM: Were you generally happy with Noah’s medical care?

Ivona Novak: Yes. The only thing that was hard was the way we were given information when Noah was in the ICU. We had a team lead from each unit—neurology, neurosurgery and oncology—coming in. They would give different information, which was confusing. It would have been better to have a funnel where all of them spoke to one person, who then communicated to us.

BLOOM: So right now Noah is in remission?

Ivona Novak. Yes. As long as the cancer never comes back, no matter what happens, I’m happy that he’s alive. We always get nervous around exam days—like when he has to get an MRI. We haven’t stopped thinking about the cancer.

No one can give us an answer on how the spinal cord injury will affect Noah. Every spinal cord injury is different. It’s hard to accept not knowing what his outcome is going to be. I’ve asked every doctor and physiotherapist ‘What do you think the chances are that he’ll walk?’

Getting a wheelchair was a huge step to realizing he has a disability. You see a kid in a stroller and you see a cute kid. You see a kid in a wheelchair and people stare and wonder what’s wrong. That transition between having an image of a normal-style family to accepting that we have a kid with a disability, regardless of how much function he gains or doesn’t—is hard. But we have to live in the now.

Tuesday, January 24, 2017

Family's residency in limbo over son's cerebral palsy

By Louise Kinross

Six years ago Kara Melissa Sharp’s family moved to Canada on a work visa her husband Alastair held as a journalist. They brought their son Sebastian, now 8, who has cerebral palsy. Since then daughter Tallula, 4, was born and is a Canadian citizen. 

Three years ago the family applied for permanent residency. In November 2015 the government asked for additional information about Sebastian’s education and health. A year later the government wrote to say Sebastian’s health and social care needs will place 'excessive demand' on Canada. This is one reason, listed with human rights violations or being convicted of serious crime, for rejecting an application. The family was given 60 days to prove that their son will not be an unusual drain on Canada’s health and social system.

BLOOM: How can you prove that Sebastian’s health and social costs will not be above those typically expected?

Kara Melissa Sharp: We have to concede that he is medically inadmissible under the current laws. However, by signing a letter that states we will pay for all social services, which includes public education, and any health costs above what a typical child would use, we will strengthen our case.

BLOOM: I understand you have a settlement from a London hospital where Sebastian was delivered, because they accepted responsibility for brain damage he suffered during delivery.

Kara Melissa Sharp: Yes. It’s complicated because in cases like ours you have a team of people on each side evaluating Sebastian and doing a cost-of-care analysis. To assess Sebastian’s needs for the course of his life takes many experts, money and time. But the costs will differ depending on where we live, so we need permanent residency before we can finalize our claim in the U.K. Essentially our lives are on hold while we wait.

We do have a small fund from his settlement, and because of this we don’t rely on the charity of groups such as the Ontario Federation for Cerebral Palsy or programs like Holland Bloorview’s family support fund. We also don’t use government funding like Special Services at Home or CCAC.

Our situation is unique in that we have access to money, but we can’t send the government a letter that says ‘this is how much we have.’ They need to tell us we can stay, so we can pay to evaluate how much we need.

BLOOM: So the idea is that the government would offer residency on the condition that you pay for all social service costs and costs above a certain threshold for health care?

Kara Melissa Sharp:
No. While we can, and will, sign a letter stating this, it doesn’t guarantee our permanent residency. It only provides a stronger argument for our case.

But we need to know more about health services. Right now there's no existing mechanism for having families reimburse the government. They expect us to pay for them at point of service. This inflates the price because we would be billed as out-of-province patients.

BLOOM: You mentioned that Sebastian will be having hip surgery soon.

Kara Melissa Sharp: Yes, in March. Our lawyer here has said if we commit to paying at least part of the cost of this hip surgery it may help our case. So we’re researching what it will cost to get the hip surgery done here without OHIP. We’ve also looked into having Seb’s recovery at home, rather than in hospital, and covering it privately.

It’s really stressful. Instead of focusing on Seb’s needs we’re finding out about the financial side and even then there’s no guarantee. We can pay all of this money for hip surgery, and they can still say you can’t stay. Then we are out of that money and our home.

BLOOM: At a practical level, how would the government expect you to pay for services?

Kara Melissa Sharp: We know a little about this because a couple of times we’ve lost our OHIP while waiting for a new work permit. The government has no process for collecting the fees, other than you not presenting your OHIP card at point of service. You’re treated like someone from out of province, so your fees are increased. We’re paying taxes but we’d be paying the costs of someone who isn’t a resident.

BLOOM: Why is the ‘excessive demands’ requirement discriminatory?

Kara Melissa Sharp: When you read the reasons for not being able to stay in Canada, all of them are about criminality. Then you have disability and health.

I don’t know what’s going to happen to me while I’m living here. No one knows the future. Something could happen to me that would result in my depending on the system for the rest of my life. That’s the reality. Sebastian is being treated as a sum of his diagnoses on paper.

It’s the kind of thing we see every day as the parent of a child with a disability and health needs. People don’t see our children as individuals. We fight for everything, so now we have to fight for the right to live here and keep doing what we’re doing. We're very active in the community, and people are writing letters for us about how we impact their lives within our community and how it’s reciprocal.

BLOOM: You said that the government seems to be viewing Sebastian as a non-person.

Kara Melissa Sharp: I feel it’s about net worth. What is your son worth, how much more are you willing to pay, and what can you pay? He’s treated as a number on a wait list. Is he taking up someone else’s spot? If he is, he’s not worth as much as someone who is also Canadian. That’s what they’re saying. That the people already here are worth more and he’s not worth as much because he has a disability.

I get it, there’s an amount of money that has to be budgeted for everything. We can help pay for this stuff and we’re going to give back. But at the end of the day, there’s another family who’s not going to be able to pay.

BLOOM: Are you able to apply for permanent residency elsewhere?

Kara Melissa Sharp: We can apply to go to the U.S. or Australia or even the U.K. But applying for visas, green cards or citizenship takes time and money, just as our application to Canada cost thousands of dollars. And we’re still in the process three years in. Our visa in Canada expires in October this year. My husband’s job is also tied to Canada.

BLOOM: You mentioned that the lack of permanent residency has impacted your plans to make your house accessible.

Kara Melissa Sharp:
We can’t buy a house because we don’t have permanent residency. We want to have an accessible house. We’d also like to do something bigger.

We’d like to open up a café-recreation therapy place where people come together of all abilities. We would employ people of different abilities and have trips. We feel it’s important that Seb continues to have a community as he grows and has the opportunity to feel like he’s doing something. We see a great need for this for young adults here.

BLOOM: What will you do if your application is denied?

Kara Melissa Sharp: We’ve already spoken to our local MP and if we can get a petition signed by 100 people, she will back it and take it to parliament.

BLOOM: The whole process sounds demoralizing.

Kara Melissa Sharp:
You don’t talk about it in front of the kids. They know something is going on, but you just hope they don’t know what’s going on. If we have to go to Ottawa and talk with the media we will have to explain to them in a way that Tallula doesn’t resent having to move, and Seb doesn’t feel in any way that he could be the reason we’re leaving our community behind.

A part of you wants to just move and say ‘this is our choice,’ we’ll start a new life somewhere. But we can’t do that because Alastair’s job is here, in Toronto.

It’s really awful to be treated like your son is just a burden. You wonder how much of society still believes we should have to pay for his care. What about other families who don’t have the money to pay for the care?

They make us feel like our son doesn’t have the right. That he’s not important, he’s not a person.

We get a disability tax credit and that really helps us out at tax time. Does this mean we’ll lose that? And if we do, then they’re not recognizing Seb as a person because his disability is a part of him. It’s not who he is, but it is part of him. Our lives are good because of him. Our life took this path because of who Sebastian is, and we live a good life here in Toronto with the friendships and support of our community.

Friday, January 20, 2017

Bloorview school: 'best place I've been to in my life'

By Louise Kinross

Years ago I knew Osmond Shen as a student in our Bloorview School. He’s now 19 and in Grade 12 and we caught up in an e-mail interview. In the photo above in Spiral Garden, he appears with his seven-year-old brother Edmond.

BLOOM: What disability do you have and how does it affect your life?

Osmond Shen: I have cerebral palsy. It causes severe limitations in motor function, speech and communication, along with limitations in accessibility to some places.

BLOOM: What is one place you wish you could go that you can’t?

Osmond Shen:
I wish I could go to Shanghai with my parents when they travel back home. But there is no option for accommodating my wheelchair on the airplane.

BLOOM: You were in our integrated education and therapy program in our school. What was good about the program?

Osmond Shen: I was in the IET for four years. One thing that was good was that there were swimming classes I was able to attend with my mom. I also enjoyed having the Spiral Garden program and taking part in all the outdoorsy activities.

Within the IET program I had the opportunity to walk around the building with special equipment. Once a week we had a mobility class and with the help of therapists we would individually walk around the building to different word wall stations as both a literacy and physical activity. That was something that I found challenging but fun at the same time.

BLOOM: Was there anything you didn’t like about the program?

Osmond Shen:
Everything was great about this program. I just wish I could stay there longer.


Osmond Shen:
Because I liked the place and the facility is great. That was the best place I’ve ever been to in my life. The IET program in particular helps us to reach our goals through gradual progression. For other schools there isn’t as much progress for students compared to the IET program.

BLOOM: How do you get your thoughts down onto the computer?

Osmond Shen:
I get assistance from other people who type down my thoughts for me. They record down as I express myself.

BLOOM: Is speech your primary way of communicating?

Osmond Shen: For people who don’t understand my speech, I have a communication display. It works by using colour-coded boxes that have some text within them that easily allows me to communicate the word by using respective colours. But the main form of communication I use in case someone finds my speech difficult is to have a friend help translate to that person.

BLOOM: How does communication affect your friendships?

Osmond Shen: With my disability it’s rather difficult to try to get to know someone because it requires a lot of patience to understand my speech. Not everyone is able to communicate effectively with me. The friendships that I do have are quite strong, since both of us are highly patient and understanding of one another.

BLOOM: It must be frustrating when some people aren’t patient enough to get used to your speech.

Osmond Shen:
I’m fairly used to those situations and what I tend to do is keep on repeating myself until they understand what I’m trying to communicate.

BLOOM: Where do you go to school now?

Osmond Shen: I’m in Sir William Osler High and I am in the special education class program.

BLOOM: What are your favourite things to do in life?

Osmond Shen: One of my favourite hobbies is to do various things on the computer. I’m quite tech savvy and have a wide selection of different apps that I enjoy working with. I also like to do online shopping, playing video games, browsing the Internet. I also have a blog about myself that I enjoy developing.

BLOOM: What are some of the apps you like using

Osmond Shen: Aside from typical Internet browsers I frequently use Windows Live mail to organize both my main e-mails into one platform. I also use the iTunes application on a regular basis to import new songs onto my iPod touch. I enjoy listening to pop music. My favourite band is Abba.

BLOOM: What has been the greatest challenge growing up with your disability?

Osmond Shen:
My biggest challenge is communicating with people. One other significant challenge is keeping myself calm and relaxed since I tend to tense up my muscles a lot, especially when I’m anxious about something.

BLOOM: What advice would you give a younger child with a similar disability?

Osmond Shen: The main advice I would give others with severe cerebral palsy is to consider getting a medical pump implant that releases medication which greatly helps my condition. The pump is also very convenient, high tech and actually very cool. I would highly recommend this as an option to discuss with your doctor.

BLOOM: Is this the baclofen pump?

Osmond Shen:
Yes, I use the baclofen pump to relax my muscles.

BLOOM: If you could change something about how doctors work with you, what would it be?

Osmond Shen: Not all medical clinics are entirely knowledgeable or equipped for people with my condition. I am somewhat limited with the places I can go to receive care. Aside from that, I’ve always been highly satisfied with the way health professionals work with me and my family.

BLOOM: What have you learned from having a disability?

Osmond Shen: I have learned that having a disability makes me unique in the same way that everybody else is unique. Having a disability has allowed me to have a unique perspective on life that others wouldn’t be able to see. I’ve also learned that even though I have a physical disability I’m still able to have relationships with my family and friends. In addition to the awesome perk of getting to cut through most line-ups.

BLOOM: What would you like to do as an adult?

Osmond Shen:
I would like to volunteer in Holland Bloorview to return the services that I received over the years for me and my families.

BLOOM: What type of volunteer work would you like to do?

Osmond Shen:
I’d like to greet people and act as a guide since I’m quite familiar with the place.

Wednesday, January 18, 2017

Taking away a parent's guilt may be 'my best gift'

By Louise Kinross

Physiotherapist Kelly Brewer didn’t picture herself working with children. For 11 years she worked with adults in the intensive care units at St. Michael’s Hospital. “I loved the teamwork, I loved the excitement, the new learning and the variety,” she says. “There was always something different working in intensive care.”

But then in 1990 her kids began taking swimming lessons at Holland Bloorview. “St. Mike’s had the best feeling in the world,” she says. “There was something so caring about that organization. I felt there was a similar feeling here—there was a real caring you could feel as you walked through the corridors. At the time I was looking for a change of job. In those days Bloorview was organized by ages and there was a job in the teen unit and I thought ‘I can work with teenagers.’” BLOOM interviewed Kelly about her 26 years of work here since.

BLOOM: What was it like to move from adult to pediatric care?

Kelly Brewer: I found it very hard and also a little sad.

BLOOM: Do you mean you missed your adult work, or that it was hard to adapt to the new work?

Kelly Brewer: Both. In acute care, turn over happens so quickly you’re always seeing new clients. It’s very fast-paced, where rehab, especially in those days, was much slower. That took me a long time to get used to. For my first two years here, I went back and worked one weekend a month at St. Mike’s to maintain my cardiorespiratory skills.

BLOOM: While you were working here full-time?

Kelly Brewer: Yes, my husband would look after the kids.

BLOOM: So what did you do when you first came here?

Kelly Brewer: I worked with teenagers on the brain injury unit from Monday to Thursday and on Friday I worked in the spina bifida clinic. It was a huge learning curve. I loved the kids, but often felt sorry that they had me for their PT! I was naïve and unrealistic in my expectations of what was possible and what I thought families could do.

BLOOM: Do you mean in what families could carry through at home?

Kelly Brewer: Yes. Over time I realized these families were coping with double what I was coping with. I was raising three kids while working full time and I certainly didn't have much energy at the end of the day. The families taught me a tremendous amount.

I remember telling a family ‘I don't recommend that your child do stairs this weekend
—it's still a little early for that. Then they came back and said ‘We did stairs because that’s the only way we could get her up to her bedroom.’ And I thought ‘stupid me.’ It was a real eye-opener. 

There was a lot more to learn here from the families than in acute care, because in acute-care everything is so condensed, you might only work with someone for a month. But here, you get to know the families and play a very much larger role in a person’s recovery.

BLOOM: What else did you learn from families?

Kelly Brewer: It broke my heart to hear about the financial constraints people were under. So many times I would say ‘Well, could you think about going out to the gym?’ and the parent would say ‘We don’t have the money and I don’t have the time.’

The families taught me about the ‘busy-ness’ of their lives. You can’t judge because you aren’t living their life. There are single parents, parents with mental illness, parents with multiple kids, parents going through divorces. You can’t control everyone’s situation. I’m way more realistic as a therapist now. When I’m setting anything up I do it collaboratively and I say ‘Does this work for you?’

BLOOM: What is a typical day like?

Kelly Brewer: I still work Monday to Thursday in the inpatient brain injury unit and Fridays in the spina bifida clinic. With the inpatients, I’m responsible for assessment, development of goals and active treatment. I see the kids four to five times a week and also assign some care to the physio assistant. We attend family meetings every four to six weeks, and also participate in weekly rounds.

There’s a fair amount of documentation to complete. Our kids are typically followed by another provider when they leave Bloorview, so we have to make sure there are reports to share with external agencies. In theory, computers are supposed to save us time, but right now going through all the different screens takes more time then when we used to dictate, which takes away from clinical time.

BLOOM: How many kids would you work with in a day?

Kelly Brewer: Usually four or five, so I typically spend an hour with each child.

BLOOM: Wow, that’s a lot.

Kelly Brewer: Every child is different. Some kids are more straightforward than others. Some clients are very challenging. But the good thing is we work in a team so if I have any questions or concerns there are really skilled people I can speak with.

That’s why I love doing what I do. I love the whole teamwork thing. If a child has behavioural issues, we have psychologists and child and youth workers and child life specialists to consult with. We also work very closely and collaboratively with occupational and physical therapists.

BLOOM: What’s an example of a challenging situation?

Kelly Brewer: It can be very hard to work with a child that isn't motivated or doesn't want to be here and has issues attending therapy. Sometimes a child's physical problems are challenging to treat and I need to consult with other PTs that I work with for advice. It's also very difficult when you just can't help your client achieve their goals.

BLOOM: It sounds stressful.

Kelly Brewer:
 We frequently have to deliver bad news. I was just talking to a parent on the phone before I came here. She had to go back to work, so I had to phone her with assessment results and goals. That’s the hard part. The good part is that at least I’ve met her once and we had a good conversation that one time. But I can’t read her body language on the phone, and I had to give her some news about how I don’t know how much of a difference therapy can make in her child. I try to give news in a way that is realistic but still hopeful. I hope I do it well and I hope someone would do the same for me.

BLOOM: That must be hard.

Kelly Brewer: It is stressful. I’ve matured over 25 years. I consider myself to be very empathetic. I try not to be judgmental and I’m very honest and open, just like I’d want to be treated. But it’s hard to give that information and I feel badly when I have to give news that is sad.

BLOOM: What do you do to cope with your own emotions?

Kelly Brewer: I talk a lot to my team members—the PTs and OTs—about the kids and that really helps. The best piece of the job is who you work with, and I work with some great people.

I also walk back and forth to work and that really helps because I plan my day. It’s a gift. I think about things when I’m coming in and how I will deal with something. If I have a difficult conversation I can rehearse it. That’s not to say that I won’t wake up some nights and think ‘Shoot, did I do that right? Did I say it right? Should I have given them that walker?’

I do wake up and worry and stress about things. Having family responsibilities is a distraction. All three of my kids have worked here and all volunteered here. Sometimes things came up at the dinner table when they were young. You can’t help but share what you’ve been through, what you've learned and how it has affected you.

BLOOM: What do you love about your work?

Kelly Brewer: A couple of things. I love the families I interact with. And I love the teamwork. It’s very cohesive and intensive and you have to work together. I also really like as an organization the whole client- and family-centred care focus. I went to that conference years ago at the Institute for Patient and Family-Centred Care. It’s great that the organization promotes this philosophy, and it’s great to feel comfortable with your relationships with families and that they’re so included in what we do. I love the teams I work with. I love working with nursing.

BLOOM: From when we were inpatients, I know that nurses are the heart of what we do. They spend the greatest amount of time with families.

Kelly Brewer:
We need them. I need them. Having good relationships with the nurses is fundamental to the work I do. I know them, they know me and we’re working together for the child. Sometimes they don’t get the merit they deserve.

I have to have positive relationships with nurses on the unit. Let’s say a child’s having a bad day and the nurse is able to share that with you. They need to know what’s going on and we need to know what they’re doing in their care that’s supporting all of this. We’re equal players.

BLOOM: Have your thoughts about disability changed over the years?

Kelly Brewer: When I first came I was much more uncomfortable with people with different disabilities because I’d had no exposure as a student or a physio. I’m way more comfortable with it now, I think at all levels, including emotionally.

BLOOM: How have you changed as a person as a result of your work?

Kelly Brewer: I was never known as an overly emotional person, and I guess I’m still not. But I’m way more pragmatic, honest and realistic.

BLOOM: Has that influenced you in your own life?

Kelly Brewer: I have to laugh. My daughter will say ‘Oh mom, I had a really hard day.’ And I’ll say ‘Well, so have I. There are people having much harder days than us out there.
 And she’ll say ‘That’s not the answer you’re supposed to give! You’re supposed to be compassionate.’ Our work highlights how difficult some people’s lives are and you realize the complaints we have are nothing compared to that. 

BLOOM: So you have perspective.

Kelly Brewer: Yes. I know how hard it is to work full time and raise kids who don’t have a disability. But to put on top of that the stress of a disability is really hard. As I’ve matured, that’s one thing I’ve come to appreciate.

One thing I’m better at is having much greater empathy and understanding for my students. One of the reasons I love working here is that it’s a teaching hospital. I’m very passionate about working with students, but I understand and am much more sympathetic to them. I know how hard it is to walk into this situation.

When I was younger I was much stricter and I’m much more forgiving now. So as you age you have more wisdom and perspective and see things through a different lens. I’ve spent almost 40 years working as a physio. I feel I’m a much better listener. I don’t judge as much anymore. I really listen to a family’s story and try to understand it.

The other thing I do is teach internationally-educated physios through the University of Toronto. It’s a course on Canada and the health-care system. I hear the stories of students who have done their schooling in other countries, and it enriches my work here, which is so multicultural.

BLOOM: What advice would you give to a young ‘you’ just starting out?

Kelly Brewer: For people coming in here, I guess I would say really try to walk in someone else’s shoes. Set realistic expectations. Listen to the family. For years, I would give families a home program in spina bifida and six months later they’d come back and I’d ask ‘Are you doing any of the exercises?’ and they’d say ‘No, we don’t have time.’ So now I don’t give them a home program unless they want it. I ask if I can help them in another way.

Sometimes the greatest help I’ve given is to make parents not feel guilty. I’ve had conversations where parents say ‘Maybe if I’d stretched him more, he wouldn’t need surgery.’ So I have these candid conversations where I say ‘No, You’re not responsible for it. You did the best you could at that time and you have to let that go. It will be what it will be. [Releasing] parents of that guilt may be the best thing I can give a family.

That honesty comes from being a working parent myself. I had to deal with homework and dinner and activities and I couldn’t do everything, and I didn’t have a child with a disability. I tell families you can’t do everything, you have to find priorities and deal with them. If it’s your child’s mental or emotional health, then that’s what you need to focus on. If your marriage is the most important thing, put your energy there.

A lot of times parents have taught me the most by ignoring what I tell them to do. Then, when I really listened and thought about my own life, I had to ask why I was asking them to do something they couldn’t do—that I couldn’t do! My best gift is to listen and say ‘it’s okay, it’s all right that you can’t do this.’

BLOOM: The problem is that every parent wants to be an A+ parent. But sometimes a child’s outcome doesn’t reflect what the parent put in. There are these homilies like ‘If you work hard enough, anything is possible.’ That gives parents the idea that they control the outcome for their child. But sometimes even when parents do everything imaginable, the child doesn’t make the progress they were hoping for. Parents need to be given permission to accept their child where they are.

Kelly Brewer: In spina bifida, if the child was walking when they were six or seven, but they don’t want to now at 11 or 12, because it’s too difficult, we let the parents know that that’s okay. They aren't being a bad parent for letting their child use their wheelchair more.

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

Kelly Brewer: I wish there was equal access to services for families. It’s really frustrating and sad when I hear about some families in one region of CCAC getting great services, while others in another region have no services.