Friday, February 24, 2017

Moving from bedside to clinic broadens a nurse's perspective

By Louise Kinross

Nancy Campbell (left) has worked as a registered practical nurse at Holland Bloorview for 15 years. She was hired straight out of nursing school, and worked the first 12 years with children on our complex continuing care (CCC) unit. She then moved to outpatient services to work in our hypertonia, spina bifida and Rett syndrome clinics. Rohan Mahabir suggested Nancy for our candid interviews on what it means to work in children’s rehab.

BLOOM: How did you get into nursing here?

Nancy Campbell: I love children. And this is where I landed after nursing school. I was very interested in pediatric nursing and when I had the opportunity to come and interview and was offered a position, I came and I never left.

BLOOM: What does a day look like for you?

Nancy Campbell: Most of my time is spent in our hypertonia clinic, working with children who have increased muscle tone. They may have stiff muscles or uncontrolled movements that make it difficult to walk or sit comfortably in chairs.

We do a nursing assessment where we ask about their general health and their reactions to any tone medications or interventions, to see if what we’ve recommended is working. Laurie Liscumb (photo right), who is the other nurse, and I are the point people for organizing follow-up appointments, funding or casting and providing education about interventions and medications.

BLOOM: What’s the greatest challenge?


Nancy Campbell: When we see children in pain. Working within this system means that there’s often a wait to fix that. For example, there will be a wait for a child to get an appointment for Botox injections at SickKids.

BLOOM: So it’s the moral dilemma of seeing pain and not being able to relieve it?

Nancy Campbell: Exactly. Wishing you could help immediately. We also see the impact that pain has on entire families—on siblings and parents and sleep and relationships.

BLOOM: How do you cope with that?

Nancy Campbell: By talking to my colleagues. And to families. Even if we can’t offer the immediate support of the intervention, I hope speaking about pain and going through the journey together helps.

BLOOM: What do you love about your job?

Nancy Campbell: I love the people. I love the team I work with. They’re super supportive and everybody really does want our clients to have the best life they can have and we’re all working towards that goal. You see it in every decision.

I love the families. Sometimes you look at a situation and think ‘If that was me, I don’t know if I could pull myself out of bed in the morning.’ But these families try their best to keep it all together. They’re resilient.

BLOOM: What have you learned from families?

Nancy Campbell: It’s really important to families that you see them as families, and not just as caregivers to a disabled child. When I moved from working with inpatients to outpatients, I realized that these are all families with their own lives happening elsewhere, and it’s not just clinical. You have to figure out how a clinical assessment will fit into a particular family’s life. Will it work and have meaning for that family, or not?

BLOOM: I didn’t realize you’d worked on CCC. What were the challenges there?

Nancy Campbell: Helping families cope with grief when their child suffers a catastrophic injury is very difficult.

BLOOM: How do you support those families?

Nancy Campbell: By trying to read the situation, to know whether a parent was ready to have a discussion about it, or needed space. I always tried to make my interaction with the child positive, so I could role model that you could still have a positive relationship with this beautiful little child.

BLOOM: What did you love about working on CCC?

Nancy Campbell: Developing long-term relationships with families. It was developing that trusting relationship where families felt safe having you with their child—and especially when they couldn’t be there.

BLOOM: How did you make the decision to move to outpatient nursing?

Nancy Campbell: I love bedside nursing, so I was hesitant when the opportunity came up. But I was looking for a new challenge with my career and new learning opportunities. I do miss the hands-on work with inpatient clients. In outpatients, you’re doing more interview-type assessments. You’re not helping someone have a shower.

BLOOM: What did you learn in your new role?

Nancy Campbell: I had worked with a lot of children with cerebral palsy on the unit, but moving into outpatient work expanded my knowledge about treatment options.

It’s too bad we don’t have a better meshing between inpatients and outpatients, because what we could learn from each other would definitely improve care on the units.

BLOOM: Do you mean in terms of treatments or your attitude to nursing?

Nancy Campbell:
Both. If I went back to inpatients now from a more therapy-focused second floor, I would change the way I nurse. Knowing that these families go home and have their own lives would encourage me to empower the families more.

Sometimes I think we felt on CCC we were helping families by taking over the care of the child, because we knew the parents were stressed and tired. But in some ways, that’s disempowering, because maybe they felt they couldn’t do it as well, or we didn’t trust them to do it, or that we were watching and they felt judged.

I’ve learned a lot by seeing families take care of their kids at home. If I was on CCC now, I would help more by doing less. I would let the families figure things out with support. I’d encourage parents to really be in charge of care and encourage the kids to do as much as they can for themselves. I wouldn’t be so worried about time constraints.

BLOOM: What kind of constraints?


Nancy Campbell: Like a child needs to learn to brush his teeth, but the school bus is leaving, so you do it quickly for him.

BLOOM: Anything else?

Nancy Campbell:
There are so many opportunities to share knowledge between inpatients and outpatients. So if I have a child with spina bifida on the unit and I know there’s an expert in spina bifida downstairs, I should reach out. Too often we work in isolation on the units. We need to remember to engage with the rest of the services in the hospital.

BLOOM: What do you think prevents that?


Nancy Campbell: It’s not knowing what we don’t know, and not fully understanding the depth of knowledge that our colleagues possess.

BLOOM: What advice would you give a nurse just starting out at Holland Bloorview?


Nancy Campbell: To be open-minded and creative and to let families help drive the decisions you make. To figure out what the family’s vision of their child is, and help them get there, rather than putting your vision of what 'should' be onto the child.

BLOOM: I guess that involves a lot of listening.

Nancy Campbell:
Yes. And it’s not about performing tasks, it’s about quality of life. If you perform a task but the child is no happier or healthier at the end, then the task isn’t of any value.

Wednesday, February 22, 2017

'He's a pretty normal dad'

By Louise Kinross

“When I was seven, I asked when I was going to get my chair,” says Elijah Wangeman, 14 (above left), in an unedited version of My Dad Matthew. The six-minute film is about Elijah’s life with his dad Matthew (right), who has cerebral palsy, uses a wheelchair and communicates by moving a pointer on his helmet to letters on a board. For Elijah, Matthew is “a pretty normal dad.” So as a child, Elijah says he imagined that he too would use a wheelchair when he got older. Matthew is a professor in disability studies at Northern Arizona University. That’s where Matthew met filmmaker John Schaffer, when John was studying special education. On Thursday Feb. 23 at 9 p.m. Eastern time, John is live streaming the world premiere of his film My Dad Matthew on Facebook. John says he hopes viewers take away “a new perspective on disability.” BLOOM interviewed Matthew by e-mail.

BLOOM: What do you teach at Northern Arizona University and why?

Matthew Wangeman: I teach disability studies and I absolutely love it! My job is to essentially challenge how my students think about disability. In fact, we developed the disability studies minor about 10 years ago to combat what people with disabilities and their family members said was the greatest barrier they faced in Arizona—the attitudes of others towards people with disabilities. I really feel I’m doing my life’s work at Northern Arizona University. What keeps me going is when I hear my students talk in the senior seminar course that I co-teach—it’s like they are completely different people. They really think about disability as a problem with society not being willing to really embrace people who are different. To me, that is how you begin to change society for the better for people with disabilities.

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


Matthew Wangeman: Probably my greatest challenge was trying to convince my Mom that I really needed to go to college! I somehow knew education would be my only key to even have a chance to have control in my life. I always say I have been extremely fortunate in my life and often I think my path could have gone in so many bad directions. I could, and probably should, write a book about growing up in two residential schools for crippled children.

BLOOM: You seem to have a very open, humorous, joyful outlook on life. Do you have a philosophy that shapes the way you live?


Matthew Wangeman: Yes, I love to laugh and I love to make people laugh. I often say I’m a ‘sit-down’ comic. I just think with humour people open up more and they’re open to understand and really think differently about a subject. Life is way too short to live life too seriously and people just like being around funny and happy people.

BLOOM: You say attitudes can be most ‘disabling.’ Can you give us an example?

Matthew Wangeman: I have never had a job that pays me for what I am truly worth. I really feel that is because of attitudes of others towards me, because I have a significant disability. I went to one of the best universities on this planet and that was UC Berkeley. I even earned a masters of city planning and was in a PhD program at Berkeley that I didn't finish. Even if I had finished my PhD, I don't think it would have made a difference because of people's attitudes towards me as someone with a significant disability who can't orally speak. This will always frustrate me.

BLOOM: You have a significant physical disability but have achieved great success academically. How can we break through stereotypes about people who have an intellectual disability? Even in the disability community, intellectual disability is stigmatized?

Matthew Wangeman: Yes, this a problem and it shows people with disabilities are just as guilty of discrimination against other people with disabilities. We must practise what we preach, but humans are flawed people and in order to feel good about ourselves it seems we must put down other people. I really don't know how we fix it, but we must continue to confront this ugly problem.

BLOOM: I would like to see us change the way we view human value—so we don’t base it on what a person does—but see it as inherent to each person, simply by virtue of being human. Do you think people should have to ‘earn’ their value by being productive in a conventional way?


Matthew Wangeman:
I happen to think the value that we place on people as part of a capitalistic society is probably one of the most harmful things we do to people with significant disabilities. People should never be judged by how much money they make, because it's so arbitrary. I love sports but it's ridiculous that someone would make $5-10 million dollars for hitting this round ball with a bat 400 feet! It makes no sense.


BLOOM: Your son Elijah provides a lovely perspective to the story. How have his insights impacted your thinking?

Matthew Wangeman:
Probably what my son has taught me the most is disability to him is typical. I am not saying that he is free from discriminating against people, because we all discriminate, but I do think he is much more open to other people who are different and in that way we can learn from him.


BLOOM: What advice would you give to parents whose child has significant disabilities?


Matthew Wangeman:
Just believe in your child and always question everything!

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 cafĂ©-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.