Collective advocacy must replace mother-led campaigns

By Louise Kinross

A decade of activism by British mothers of children with disabilities hasn’t produced positive change in the lives of disabled people, write two researchers in a fascinating article this month in Disability and Society. The authors—Katherine Runswick-Cole and Sara Ryan (photo above)—are disability studies scholars and parents to children with intellectual disability. “Despite the efforts of countless mothers of disabled children, and others, over the last 10 years, the outlook remains bleak,” they write. “We live in a world now where our children with learning disabilities will die on average 23 to 29 years before their peers (NHS England 2017), startling evidence of the limits of advocacy for, with and by learning disabled people.”

We interviewed Sara in 2015 about the preventable death of her son Connor Sparrowhawk, an 18-year-old with autism and seizures. In 2013, Connor drowned alone in a bath in a National Health Services treatment unit. The NHS trust that ran the unit initially attributed his death to natural causes, but his parents called for an independent investigation that found his death preventable. Last year, Southern Health in Britain was fined just over $1.8 million dollars for this preventable death.

Sara and Katherine, who are at the University of Oxford and the University of Sheffield respectively, argue that campaigns based on mother advocacy have failed for generations. Yet every new generation, not looking back, insists they’re pioneers in the cause. The authors suggest we need to move away from mother advocacy—which is undermined by a culture of mother blame, focuses on individual families vs. systemic problems, and pits mothers of young children with disabilities against mothers of adult children—to a new collective activism that brings all sorts of people together.

BLOOM: You note that many parents of children with disabilities believe that the general public just doesn’t understand the discrimination their kids face, and that if only they were made aware, changes would occur. But you don’t buy into that. You say you’ve been doing this work for 10 years and conditions in the U.K. for people with disabilities have only gotten worse.

Sara Ryan: Yes. There was a good chunk of solid policy in the U.K. at the beginning of the 21st century that engaged with learning-disabled people as human beings who we need to value, and who have aspirations. That positive movement has come to nothing. Things have gone backwards.

Ten years ago, we thought we were pioneers in raising awareness and we’d sort everything out. We didn’t realize the generations of parents and mothers who had done the same things we were doing. We disempowered the people who came before us.

BLOOM: You point to something I’m very aware of—which is a split between young parents of kids with disabilities and older parents of adult children, who have been advocating for a long time. I know when my son was young, I didn’t want to hear about the experiences of adults with disabilities because I wanted to focus on his unlimited potential. I wanted to believe we had the capacity to make big changes.

Sara Ryan: As young parents you’re totally fresh, and you think things won’t be as bad for your children.

BLOOM: In a way, you don’t want to hear about the real struggles of older parents.

Sara Ryan: I understand that. You’re facing something unexpected and unfamiliar, and you have a lot to grapple with. But it’s really unhelpful in terms of social movements and change if the movement is inherently fragmented when people break off when their children go into adult services.

BLOOM: It’s so short-sighted, to turn our backs on the families who have done the hard work before us.

Sara Ryan: It’s also sustained by big charities who almost 'groom' the younger parents to make them feel they’re pioneers in leading the way. These charities have been saying the same things for 40 years, and it’s not in their interest to say it hasn’t worked. They present their campaigns as something new for parents of young children, while erasing the work that’s been done in the past.

BLOOM: I guess promoting a campaign that focuses on young children—and the sense of possibility inherent in them—is more likely to be well received than one that focuses on the realities for adults.

Sara Ryan: Young children are cute. But there’s a change happening with young mothers today. There’s one mother on Twitter who posts a photo of her young son with Down syndrome beside the facts about the early death he faces. She wants people to think about that, and it’s really powerful.

BLOOM: You talk about mother blame in your article—whether we’re blamed for our child’s disability, or blamed for not doing enough or the right therapy, or blamed because our children are costly. How does mother blame influence the efficacy of social justice campaigns by mothers?

Sara Ryan: That’s an interesting question. In our original paper we were saying that mothering is an invisible endeavour, but by token of having a disabled child, your mothering becomes visible. You’re seen as a poor mother due to your child’s unruly behaviour.

When we began our campaign #JusticeforLB [LB stands for laughing boy, a name Sara used in her blog about Connor], there were attempts by the trust, the local authority and NHS England to blame me, or to cast me as an irrational mother, to diffuse the strength of our arguments. But what was unique about our campaign was that over time, the demand for answers became a collective endeavour by a diverse range of people. Most had never met us. That reduced the potency of the 'mother being the problem,' so our campaign was very effective.

BLOOM: You refer in your article to a new form of advocacy called unmothering. Can you explain?

Sara Ryan: It’s about loosening that expectation that the child and mother bond is somehow essential, and allowing other people to step up and be involved in a campaign—to take part and speak and act. If the campaign is just about a mother, it’s an individual focus, which is necessarily weaker.

BLOOM: You write that unmothering doesn’t devalue mothering, but disrupts ‘the idea that the mother alone is responsible for raising children.’ How was the #JusticeforLB campaign an example of unmothering?

Sara Ryan: It was the collective approach of it. We ran a campaign within the campaign called 107 days of action, to mark every day Connor had been in the unit before he died. We asked people to adopt a day to fundraise for our legal fees, or to raise awareness. We had a teenager who canoed 100 km to the House of Commons with a photo of Connor on her back. We had a Brownie pack in New Zealand that drew pictures of buses, which Connor loved. We had people who did lectures or sports events in Connor’s name. People adopted a day to do cake sales. These activities had nothing to do with mothers, and in most cases they were undertaken by people who didn’t know Connor or our family.

BLOOM: How did you get people who weren’t personally invested in your family to participate?

Sara Ryan: I’d been writing a blog about Connor, and early on it was really funny stories about the hilarious things he did. By the time he died, so many people were reading the blog, which was anonymous at the time, that they felt they knew him. That made the impact of his death more powerful. He wasn’t a learning disabled person. He was a fully fleshed out member of our family, and he was very funny. The fact that he was a beautiful young man with funny stories was what took hold.

BLOOM: Yet you note that storytelling by mothers hasn’t traditionally produced results.

Sara Ryan: I think stories are important, but I don’t think they make change. The Disabled Children’s Partnership recently launched a new campaign called #TheSecretLifeOfUs to raise awareness of the challenges faced by families. But the campaign is premised on the mistaken assumption that the lives of disabled children are hidden.

BLOOM: Yes, you note that children being excluded from school and bullied, and the isolation and poverty of families, has been well documented.

When Connor died, the NHS trust first blamed his death on him, saying he had died of natural causes. Then they shifted to criticizing you.

Sara Ryan: A day after Connor died, a document called a briefing on the mother’s blog was produced and circulated, which suggested that I might be troublesome because I’d written that Connor had had an earlier seizure. Blame is completely at the heart of it. The biggest example was before Connor’s inquest, our solicitor read transcripts of evidence given by staff. They said things like ‘My relationship with Dr. Ryan: I was very scared of her. She was unusual.’

BLOOM: As opposed to staff testifying as to why it was that Connor ended up behind a closed door in a bath where he had a seizure?

Sara Ryan: I had said to staff ‘Connor is having seizures.’ It kept coming up in the inquest that the defence for each of the staff members was that the mother was so difficult it was impossible to provide good care to Connor. When Connor was in the unit I wouldn’t have dared to be angry, for fear of retribution. We were so worried about Connor.

Read the annual reports of the British Learning Disabilities Mortality Review.

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'I'd like to see siblings treated more like patients'

By Louise Kinross

Victoria Rombos has worked in Holland Bloorview’s Ronald McDonald playroom as an early childhood studies student, then volunteer, and now staff member. But her connection with Holland Bloorview goes way back. Victoria’s younger sister Chrysoula, 19, developed a seizure disorder after having cataract surgery as a toddler. "It was a side effect of the surgery, but I only just found that out," Victoria says. "I thought I knew the story, but I keep finding out more." As a big sister, Victoria is very involved in Chrysoula’s life, so it's fitting that she's spearheading Holland Bloorview's new Sibling Support Program.

BLOOM: How did you get into this field? 

Victoria Rombos: It was because of my sister, mostly. 

BLOOM: How would you describe her?

Victoria Rombos: I describe her as sassy. She has an intellectual disability and uses a wheelchair and is non-verbal. We’re not entirely sure how much she understands, but I think she understands a lot more than people think. She’ll laugh at things, or pretend to be asleep and then pop open her eyes. She likes music. The Wheels on the Bus was always her song. I get her to play games on the iPad where she touches things and they change colours. I try to paint her nails sometimes, but she moves around too much. Recently she had a three-month stay at Sunnybrook due to pneumonia.

BLOOM: How have you found the move to the adult system?

Victoria Rombos: My sister is very small, so they were taxiing child-sized equipment back and forth from SickKids. Most of the nurses at Sunnybrook hadn’t encountered people with disability. They really didn’t have a sense of her needs, and my mom was going through the complaint department constantly. Now my sister has a trache, which has been a real learning experience.

BLOOM: Does your sister have home nursing at night?

Victoria Rombos: Until recently, she only had 12 night nursing hours a week, and my mom had to do everything else at night. We were just given an increase to 24 night hours a week.

BLOOM: That’s still a huge amount of night hours that your mom needs to do. What was it like growing up with a sister with pretty complex needs?

Victoria Rombos: It was really interesting. I only felt super different sometimes. The public school I went to had the Wayne Avenue preschool in it, so Chrysoula went there when I was in Grade 2. I remember when I asked the principal why my sister’s birthday wasn’t included in the announcements, like my birthday was. I used to like pulling the wagons with the kids in the preschool and I would get my friends to come and help. Since then, Chrysoula has gone to a segregated school, which works best for her.

I definitely feel isolated from other people sometimes, that I've had experiences that are different from my peers. I feel I would have benefited from knowing there were other kids who had a sib like me. In 2016, I sat on Holland Bloorview’s sibling panel. It was the first thing I’d done as a sib. I remember talking with Michelle Char, who was also on the panel, and being so surprised that she got it. She knew what a suction machine is.

When I was younger, I thought my parents liked my sister better than me because they spent more time with her. I was a little resentful, but I was a really empathetic kid. When kids with disabilities were picked on at my school I would tell people off. I had a lot of family support when my sister was in hospital, and would spend time with my grandmother and other relatives.

BLOOM: So your early experiences with your sister in the health care system influenced your career choice?

Victoria Rombos: Yes. I always wanted to work with kids with disabilities. Initially I wanted to be a teacher. I was interested in a special-education degree at the University of Toronto, but in my last year of high school they changed the requirements to include statistics and the highest math. That wasn’t happening! So I looked at the next closest thing, which was the program at Ryerson.

BLOOM: What ages does the early childhood studies program cover?

Victoria Rombos: Zero to five.

BLOOM: What’s a typical day like in the playroom for you?

Victoria Rombos: As it’s a drop-in, we never know what to expect. If there’s a clinic, we often get three to five kids in the morning, and then afternoons are typically a bit busier. We work with kids who are clients and their siblings.

BLOOM: What are the joys of the job?

Victoria Rombos: I like seeing the relief on parents’ faces when they realize they can take a break, or drop off all their coats. Sometimes parents will talk to me about something I can relate to, because I grew up with my sister. I like that I have that relatable sense. The kids are the most entertaining part. I like the different reactions they have, and when they ask lots of questions, or tell you about their favourite movie or what they've done that day.

BLOOM: What is the greatest challenge?

Victoria Rombos: Sometimes kids will ask a lot of questions of other kids who have disabilities, but without a filter. Sometimes we need to reroute those questions.

BLOOM: You’re running a new support program we offer for siblings aged seven to 18. How does it work?

Victoria Rombos: The sibling program shadows the family workshops that Melissa Ngo runs. They happen at the same time. We wanted to have a holistic family approach, so parents could go to the education workshop, while sibs come to our program, and patients go to the playroom.

There are official sibling programs in the U.K. and the U.S., but not in Canada. I’ve been getting inspiration from looking at those official programs, and then asking our siblings what they’d like to see.

I integrate things about siblings into relational games we play. One is called the spider’s web. One child holds a ball of yarn and says something about themselves, and if what they say relates to another child, that child puts up their hand and gets thrown the ball. It allows you to see how we’re all connected.

I may bring up a disability-related topic when I hold the yarn, like ‘my sister doesn’t talk,’ and see how many other kids relate to that. Another successful one is to ask what they like about their sibling, or what bugs them about their sibling. A child might say ‘I don’t like the sound of my brother’s CPAP machine.'

BLOOM: Why is this program important?

Victoria Rombos: If a child goes to a school that doesn’t have a lot of students with disabilities, or goes to a different school from their brother or sister, it’s important to meet other kids like them, and feel less isolated. Some kids may need to vent about something they feel is unfair in their family, and find another sibling who feels that way. It helps children feel less alone.

BLOOM: What do you think is most misunderstood about siblings?

Victoria Rombos: Even now, there’s a lot of stuff my friends don’t get. They may talk about the future when their siblings will have kids. My sister won’t have children, and it’s not in a bad way, but it’s a newer thing I’m dealing with. We really need to destigmatize disabilities. Even some people in my family will say hi to my sister, but they don’t know how to really approach her. When you have a disability and you can’t speak, a lot of people discount you. They need to realize there’s a personality there.

BLOOM: Do you currently live at home with your sister?

Victoria Rombos: Yes. I’m not in a super rush to move out. I feel like I’m needed there. I would rather stay home and help my parents. Chrysoula was going to school five days a week, but since she got her trache, she needs a nurse. So my mom was told she can only go to school three days a week.

BLOOM: That’s terrible! There seem to be so many situations we’re hearing about where children with disabilities are not able to attend regular school hours, for all kinds of reasons.

Victoria Rombos: It’s not a good situation for my sister or my mother.

BLOOM: If you could change one thing about how we support siblings, what would it be?

Victoria Rombos: Siblings tend to fall into a gap. We have different programs and events for parents. I’d like to see siblings treated more like patients, like they’re important, and not a side thing. We go through a lot of emotional stuff. I remember the first time they intubated my sister and how upset and emotional my parents became. That's when I realized how serious this was, compared to her other hospitalizations. When you see that it’s traumatizing.

To find out more about Holland Bloorview's Sibling Support Program, e-mail siblingsupport@hollandbloorview.ca. To refer your child, fill out this form. The program is funded through our foundation's No Boundaries program. 

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Southern Health fined $1.8 million in death of Sara Ryan's son

By Louise Kinross

Yesterday Southern Health in Britain was fined just over $1.8 million dollars for the preventable death of Connor Sparrowhawk, an 18-year-old with autism and seizures who drowned alone in a bath in a National Health Services treatment unit in 2013. The NHS trust that ran the unit initially attributed his death to natural causes, but his parents called for an independent investigation that found his death preventable.

Connor's mother Sara Ryan (above left) had warned staff that Connor appeared to have bitten his tongue and was disoriented during a visit, suggesting a seizure. But he was allowed to bathe unsupervised behind a locked door, where he drowned.

Because of Sara's tenacity, more than 1,000 unexpected deaths of other Southern Health patients with intellectual disabilities or mental illness, that hadn't been investigated, were uncovered.

BLOOM interviewed Sara in 2015: Son's death sparks a search for justice.   

In her statement from the family yesterday, Sara wrote:

"No one should die a preventable death in the care of the state. Learning disabled people should not die on average 20 years before their non-disabled peers. Families should not have to fight for answers and accountability."

A 2013 inquiry into the deaths of 247 adults and children with intellectual disability in England and Wales found women with intellectual disability died 20 years earlier on average than the general population, and men with developmental disability died 13 years earlier. Over a third of the deaths could have been prevented with good health care. 

Photo below of Connor with his sister Rosie.

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How one family's dream of a service dog came true

By Kara Melissa Sharp

I knew Sebastian needed a dog when he was two. He was recovering from pneumonia in hospital, and we hadn’t seen him smile in a week. Then the hospital therapy dog arrived and he beamed.

Four years later I applied for a service dog for Sebastian, only to be heartbroken when he was turned down.

I’d spent months on the 15-page application for a dog trained in seizure assistance. But five minutes after the charity received my package, I got an e-mail saying Sebastian didn’t qualify. Because Sebastian is dependent on others for everyday tasks, they said he was incapable of bonding with a dog.

I was appalled. How could they be so dismissive? Without even meeting Sebastian, or our family, they’d made a decision based on paperwork. Sebastian had already developed a great relationship with a therapy dog at his preschool, so I knew he could bond with a dog of his own. And he wanted one. He’d started to tell his teacher and classmates at senior kindergarten that he had a dog at home because he wished it so much.

I didn't give up and extended my search to organizations throughout North America. I spoke to a few groups that have families fundraise to cover the cost of the dog and training. But the family also needs to cover travel costs for the trainer. Training alone can cost up to $30,000.

There were also organizations like the first charity we tried, where you apply and, if accepted, are put on a two-year wait list. Unfortunately, we didn’t qualify based on our location. I wasn’t sure what to do. I spoke to everyone—even my hairstylist!—to brainstorm ways to get a dog and cover the training.

Our search led us to a woman named Sherry at Swissridge Kennels. Each year she donates a dog to a family in need and organizes a fundraiser to help pay for the dog's training. Sherry breeds Goldendoodle and Berndoodle puppies. I sent her a letter introducing ourselves and asked about that year’s fundraiser. I learned we were in the running! After a few emails back and forth, Sherry came for a visit. She even brought a few dogs to meet Sebastian. It was an exciting day for the whole family! After our meeting, Sherry decided that Sebastian would be a good fit for one of her puppies.

Sherry wanted to wait until the litters would be born in the spring to choose the right puppy for Sebastian. It was a long winter! When we returned from our trip to Australia in May, Sherry had a visit planned to bring along one of the other women who helps with the Swissridge Doodle Romp charity, Karley. To our great surprise, when we opened the door we were greeted by Sherry, Karley and a new Goldendoodle puppy!

Sebastian and this puppy immediately bonded. We were over the moon. There would still be a long wait with training ahead but Sebastian had a service dog! Over the next two weeks we went through every name we could think of before Sebastian chose Ewok.

Ewoks are a race of Star Wars' creatures who look like furry teddy bears and have their own language. I used to call Sebastian my little Ewok when he was a baby because of the sounds that he makes (since he doesn't use words like we do). I showed him a video of an Ewok and asked if he thought the puppy looked like it, and whether it would be a good name. He said yes!

Ewok currently lives with a family to do his imprint training, which is the basic house training, obedience and socialization stuff. He’s started to work with the trainer and soon will live with him full-time for more intensive training to become a therapy and seizure alert dog. Once Ewok is ready, we’ll join in the training sessions twice a week. Then Ewok will come home with us, but we’ll continue to go back to Swissridge for training as needed.

How does all of this get paid for? Through Sherry’s generosity and the community she has created with other Swissridge dog owners, all of the funds have been raised to pay for Ewok’s training. In August we attended the Swissridge Doodle Romp, a reunion of sorts for other familes that have Swissridge dogs. While people drive from all over to meet and connect with other familes and their Swissridge dogs, they also come to donate. And donate they did.

This year the Doodle Romp raised over $25,000. We will not need to personally fundraise or contribute financially to Ewok’s care and training. We are so thankful to have been welcomed into this caring community. While at the romp several photos were taken and one now hangs on Sebastian’s wall while he waits for Ewok to come home.

We’ve talked a lot with Sebastian and his sister, Tallula, about what having a service dog means. We have talked about how Ewok will be Sebastian’s dog. He will sleep in his room. He will go for walks with Sebastian and Sebastian will be in charge of feeding him and giving him water, with our help. We are even programming commands for Sebastian to say to Ewok using his eye gaze with the goal that the trainer will use clips to help Ewok become familiar with Sebastian’s "voice."

We hope that Ewok will help break social barriers while we’re out. We also look forward to Sebastian feeling a bit of independence as it will be his job to care for Ewok. Most Toronto parks are not inviting to kids using wheelchairs. As Sebastian gets bigger it is more difficult for him to be carried up and down the slides and sometimes even the inclusive swings are broken from misuse. Soon Sebastian will have an alternative. He can take Ewok to the dog park!

I grew up with dogs in our home. When I was 11, I even had the opportunity to choose and care for my own dog. Having a dog certainly adds responsibility and creates a life change. But for our family, for Sebastian, I can only see that as positive. Sebastian’s whole face lights up when we talk about Ewok. He loves telling friends and people he meets about his dog. We get video and photo updates every couple of weeks from the family he’s living with, and they’re often the highlight of Sebastian’s week. Sebastian asks questions to learn more about Ewok and what he’s learning, too.

Ewok will be trained to walk alongside Sebastian. He will nudge Sebastian’s head up when Sebastian is tired and his head control wavers. We hope he will be able to notify us if Sebastian is having a seizure during the night or otherwise needs us. He will provide Sebastian a companionship that he will find nowhere else. He will also provide Sebastian a sense of responsibility and independence. Having a dog will help others see that Sebastian is a kid—a kid who loves a dog and loves life.

We don’t have a home date for Ewok because his trainer wants to make sure Ewok is ready for us and we’re ready for him. But he's already part of the family.

Follow Kara at Free as Trees.

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'Neglect' contributed to autistic teen's death in NHS unit

By Louise Kinross 

In 2013 Connor Sparrowhawk (with sister Rosie) drowned in a bath following a seizure in a National Health Services treatment unit in Oxfordshire, England. He was alone.

Today a jury inquest ruled his death had been "contributed to by neglect" and said staff had poor communication with Connor's family and inadequate training and supervision. 

The 18-year-old had autism, epilepsy and intellectual disability. The NHS trust that ran the unit initially attributed his death to natural causes, but his parents called for an independent investigation that found his death preventable. 

Earlier this year we interviewed Connor's mother Sara Ryan, a senior researcher and autism specialist at Oxford University. "The staff had the knowledge," she told BLOOM. "They knew he was epileptic and I'd told them he was having seizures in there and was sensitive to medication change. They hadn't properly assessed his epilepsy and he was left unsupervised in the bath."  

Please take a moment to read the family's story.   

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'Making friends' an unexpected rehab gift, parents say

By Louise Kinross

Jimena Ortiz and Ricardo Menendez say one of the greatest gifts of their son Sebastian's inpatient stay at Holland Bloorview was the friends he made.

Because of life-threatening seizures, Sebastian, 16, wasn't able to go out with school friends in the past. "We didn't allow him to go anywhere alone so he missed trips with school," Jimena said on Friday as they were packing up to leave. "He felt like he was alone, and different from the other kids. His self-esteem was very poor."

Sebastian came to Holland Bloorview in March after brain surgery to remove an area thought to be causing his seizures.

"We are so blessed to be here," Jimena said. "He had physio, speech therapy, school, occupational therapy and so many groups where he got to meet other kids: a teen support group, the lunch club, and a cognitive group. The staff helped him work on social skills and looking people in the eye and he's going home with so much confidence. He's made three very good friends. He says he's not alone anymore and he has friends that understand him. The experience in the hospital gave him an attitude of being more understanding of other kids and of their parents."

Sebastian didn't have a seizure for six weeks following his surgery, but did have three shortly before he was discharged. "The big goal was that he be free of seizures but we are generally feeling more optimistic. Sebastian has a hope to be normal: to be able to drive, go to sleepovers and parties and trips with friends."

Jimena says she benefited from getting to know other parents of children who were hospitalized here. "I've made some good friends too. It's been an unbelievable experience to see parents with a pure love for their kids."

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Son's death sparks a search for justice

By Louise Kinross

In 2013 Connor Sparrowhawk (with sister Rosie) drowned in a bath alone in a National Health Services assessment and treatment unit in Oxfordshire, England. The 18-year-old had autism, epilepsy and intellectual disability (referred to as learning disability in the UK). The NHS trust that ran the unit initially attributed his death to natural causes—but his parents called for an independent investigation that found his death preventable. Twenty months later, Connor’s mother Sara Ryan, a senior researcher and autism specialist at Oxford University, is still seeking justice for her son.

BLOOM: Tell me about Connor.

Sara Ryan: He was very quirky and quite eccentric. He had an enormously brilliant sense of humour. He loved transport—buses and coaches. He had a bit of an encyclopedic knowledge of history. He was very good with facts and figures and loved the legal system and the police. But he couldn’t leave the house on his own because he had no road sense and he couldn’t count to ten.

BLOOM: When did he go to the unit called Slade House?

Sara Ryan: He went to secondary school from 11 till he turned 18 and he was a delight really. Then when he turned 18, almost overnight, he got really anxious and very unlike himself. He was difficult to engage with, had lots of dark thoughts, and was in and out of school because he was aggressive. He began bashing his head against the wall and I was worried he was going to hurt himself or someone else. The night we admitted him he wanted to go home and they had to restrain him on the floor with four people face down and section him. In all his life with us, we’d never laid a finger on him.

BLOOM: You had concerns after he went in, specifically about him having seizures there?

Sara Ryan: He was part of a happy family and the minute he went into the unit, because he was 18, they treated him as an adult. We had to phone up to get permission from him to visit, which was very odd. They didn’t engage us at all and changed his medication. I visited and could tell he’d had a seizure because he’d bit his tongue and was very disoriented. They disputed that.

BLOOM: What happened the day of his death?

Sara Ryan: I got a call that he was unconscious and on the way to the hospital in an ambulance. When I got there the consultant said straight away that he was ventilated but there was nothing they could do. They switched off the machine while I was there. Two weeks later the NHS trust published in its board minutes that a ‘service user’ had died of natural causes.

BLOOM: At the time of his death, Connor had been in the unit for 107 days but hadn’t been assessed or treated. What were they doing?

Sara Ryan: He was there for 107 days and the psychiatrist saw him three times. The psychologist filled in some questionnaires, but they didn’t come to anything. They said they were going to do social stories with him, but they never did that. He was a school boy and they should have been taking him to school. But they gave him choices, so he’d say no and stay in his room and watch DVDs.

BLOOM: How did you get an independent investigation into his death?

Sara Ryan: Before he went into the unit I’d been blogging about our family's life with Connor. It was about all the amusing things he did. Lots of people subscribed to it and became very fond of him. When I posted one line on the day he died it went viral. And when we found out the trust was saying he died of natural causes—and was going to do an internal investigation that clearly wasn’t going to find out anything—we made a lot of noise online and eventually they capitulated.

BLOOM: What did the independent investigation find?

Sara Ryan: That it was a preventable death. The staff had the knowledge. They knew he was epileptic and I’d told them he was having seizures in there and was sensitive to medication change. They hadn’t properly assessed his epilepsy and he was left unsupervised in the bath. Twenty months later we’re still waiting for an inquest and the police are still investigating.

BLOOM: I understand the unit was later closed?

Sara Ryan: Nothing happened after Connor died and we contacted the Care Quality Commission. They were about to do an inspection there. They were so shocked by what they saw that they failed the unit on all 10 quality and safety standards and the trust decided to shut the place down. There was no battery in the defibrillator. It was dirty and there was no therapeutic environment.

BLOOM: What accountability do you want from the NHS trust?

Sara Ryan: We want the staff to be disciplined, as appropriate, and a corporate manslaughter charge brought against the trust. We want meaningful involvement at the inquest, which is provisionally set for Oct. 5. We also feel that the commissioners who were commissioning the service—which cost about $1,000 a day—have some role to play. The commissioners spend money on services that you wouldn’t let your dog stay at.

The mortality rates of people with learning disabilities in the UK are shockingly high.* Because the trust said Connor’s death was ‘natural causes’ we were concerned that learning disabled people might die regularly in hospitals and units and their deaths wouldn’t be properly investigated.

Through our campaign we had a meeting with the chief executive officer of NHS England and he agreed to commission a review into deaths since 2011 of people with learning disabilities and mental health issues in the care of the trust.

We want the law changed so that families don’t have to pay for legal representation at the inquest and we believe there should be an independent investigation if someone with a learning disability dies in a hospital or other secure setting.

BLOOM: In a report you produced, you wrote about the lack of humanity in how your family has been treated.

Sara Ryan: I think how they treated Connor was extended to us after he died. They stripped away any sense of him being part of a family and treated him as an object. Once he died they didn’t demonstrate any empathy or compassion or understanding for the pain they caused us and for all kinds of delays and obstructions and deceit really. It’s made what was such a horrific and unimaginably awful situation so much worse. For example, they had the trust’s barrister sit in at a pre-inquest review and try to argue that drowning is a natural cause of death.

BLOOM: What will your legal costs be?

Sara Ryan: Families in the UK don’t get any legal help for inquests and it will cost us almost $50,000. The NHS trust draws on public funds to arm itself with very good legal representation. We were able to raise the money we need through our social media campaign and selling postcards and other fundraising efforts, which is quite remarkable.

BLOOM: In your report you say ‘The ultimate barrier appears to be that learning disabled people are seen as less than human.’

Sara Ryan: Generally, in the way our social life is organized, our kids tend to go to special schools and leisure activities aren’t accessible, so people don’t come into contact that much with people with learning disabilities. The chance of having a job is low, so there isn’t a big community presence. When I started blogging about Connor I made him human in a way that he hadn’t been seen outside of his family and school. Even my colleagues started to chat with me about him. After the weekend they’d say ‘it was hilarious that Connor did this or that.’ They began to see that he was a quirky, funny young man. Ultimately we need to bring the human back so people can appreciate these kids as individuals like anyone else, who just have their own ways of doing and saying things.

BLOOM: You’d like to see more money allocated to community supports?

Sara Ryan: Assessment and treatment units like the one Connor was in have complicated costing arrangements and the money doesn’t tend to follow the person from the unit back to the community. Often the local authority has to find the cost of the support package. You might be able to stay in a place that costs $1,000 a day (indefinitely sometimes, a National Audit Report published last week found the average stay for someone in an assessment and treatment unit is 17 years), but when you come out the local authority hasn’t got the funding because of cuts to welfare costs. In addition, no one seems to know what good care looks like.

*A 2013 inquiry into the deaths of 247 adults and children with intellectual disability in England and Wales found women with intellectual disability died 20 years earlier on average than the general population and men with developmental disability died 13 years earlier. Over a third of the deaths could have been prevented with good health care.

Please see a talk Sara Ryan gave at a patient experience conference at the University of Oxford: How to hear voices that are seldom heard

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Hope that high-fat diet will tame a little girl's seizures

By Stephanie Ly

It was a sunny and glorious Muskoka morning when our daughter, Pepper, had her first seizure. It wasn’t the first time I’d seen a seizure, but it was alarming to watch my nine-month, otherwise perfectly healthy baby girl, drop and seize.

We called 911 and had her taken to the nearest hospital. Since it was her first seizure, she was otherwise healthy and her vital signs all checked out as normal, we were sent home without further treatment.

Two seizures later that same day, she was treated with a low dose of her first anti-convulsant medication. So began a series of hospital visits and medication trials for Pepper worthy of an 80-year-old in poor health.

My only knowledge of the medication Pepper was first prescribed was that it was used to treat dogs with seizure disorders. No joke. I had a friend who treated his dog with the same medication after the dog suffered a stroke and began to have seizures. So why were we treating our daughter with this medication? And why, when this drug stopped working, was she prescribed another anti-convulsant? And then, yet another? And after a year, why were we still manipulating her doses with little effect? Why? Why? Why?

Epilepsy, or rather intractable epilepsy, as Pepper is known to have, is a condition where treatment fails to control seizures. Since she was nine months old, Pepper, who is about to turn three, has experienced, at most, a month’s repose from seizure activity.

Despite pharmaceutical intervention, she continues to have seizures regularly and we don’t know why. Pepper doesn’t appear, from numerous genetic tests, to have any genetic basis for her condition. Nor does she appear to have any physical cause for her seizures. She just has them. Like that. And like that, she takes medication, which doesn’t control her seizures.

The medical community doesn’t always discuss with you all the pros and cons of the medication they prescribe, though they attempt full disclosure based on their awareness. Instead, their mandate is to treat the symptoms in the most effective and, to their knowledge, safe manner available. Sometimes, in times of crisis, you are left wondering, where are my options?

First Do No Harm is a movie about a mother trying to save her son with intractable seizures. The concept of “first do no harm”—a fundamental medical precept by Hippocrates—is important to our family because for two years Pepper was given an old seizure medicine known to cause developmental delay, without doctors telling us of this connection.

Our daughter has developmental delay, so that feels like a failure on our part.

In First Do No Harm, the child is finally treated using the ketogenic diet, which is a natural alternative to medicine that we learned about at the Hospital for Sick Children.

The ketogenic diet alters the body’s metabolism to create changes in brain chemistry that prevent seizures in some people.

Pepper was admitted to Sick Kids in late May of this year to begin her own journey on the ketogenic diet. The diet itself is a low carbohydrate, high-fat diet in which the body converts fat into energy, rather than using glucose, in a process called ketosis. Ketosis is the same process that kicks in when someone is fasting, and fasting has been a traditional seizure treatment for centuries.

There are a few variations of this diet used to treat epilepsy. Pepper is following the MCT Diet, which uses Medium Chain Triglyceride oil as one of the flash points for initiating ketosis. It is a strict diet and it takes patience, vigilance and strength. Good thing we have those—in spades.

Since Pepper started the ketogenic diet, we have had major adjustments in our household. Time management has been a huge shift. Meals must be prepared in advance and with precision (we weigh and measure to the very last point of a gram). The meals are then packed with care so as not to expose the oils to light, or to spoil the fresh foods that Pepper goes to preschool with every day.

Her meals are administered, much like medication, at certain times of the day, with even spaces in between. She’s given plenty of water to keep her kidneys clean and stone-free. Her ketone levels are monitored twice daily, her blood glucose levels are checked occasionally and she is always being watched for seizures, digestive ailments, fatigue or discomfort. Since day one of her first seizure she has not gone without someone’s eyes on her, and this diet hasn't changed that aspect of our lives.

What has changed, however, is that we've seen cognitive improvement! Since the second day of her admission to hospital, Pepper went from being mostly unresponsive and in her own little world to interactive and engaged. It was something immediate and so noticeable. It gave us hope, and it still does. As for seizure control, we are still in the process of determining the diet’s efficacy and will be for a few months.

We’ve definitely seen a reduction in seizures, and Pepper has recently gone three weeks without a seizure, which has been remarkable and promising. We have hope, something we were slowly losing over time.

A typical day on the ketogenic diet starts the night before, or sometimes many nights before. Fresh food is always prepared in advance, with very few ingredients and simple foods. Pepper does not get any processed food, with the exception of a specialized drink to raise her ketones. Otherwise, she is getting a protein, a carbohydrate, a vegetable and/or a fruit and a fat at breakfast, lunch and dinner. Each of these food categories is weighed according to her meal allowance.

Preparing meals two days in advance and having things pre-chopped helps a lot, as does buying frozen fruits and veggies (it’s easier to improvise when you have a freezer full of fruits and veggies).

Pepper’s combined meals total approximately 900 calories per day. This is within range for her age. The meal sizes however, appear so small. For example, at lunch, she might get roughly the size of a tablespoon of rice, a tablespoon of chicken, a tablespoon of peas, a pad of butter and four grapes. To think that I could almost polish off a whole roast chicken to myself is eye-opening.

It’s also not easy. Most children Pepper’s age would turn their cute pouty faces away from such food restrictions. This is where her good nature and developmental delay are an advantage. She doesn’t have the cognitive awareness to protest, or to expect anything different. She just accepts what she is given.

We on the other hand, have had to adjust to many things. Our shopping list, of course, our eating schedule and finally and most challenging of them all, our routine. Finding the time after a long day’s work to prepare everything has been a challenge. But we do it.

Just as Pepper continues to smile with each meal, and with each newly acquired skill, and another day passes where she doesn’t have a seizure, and we all finally have a restful night, we adapt.

We accept that our daughter has a seizure disorder that may or may not be treated. We live day to day with the uncertainty of Pepper’s seizures. We have good days and horrible days. It’s a constant up and down of emotion.

Our biggest coping mechanism is Pepper’s smile and her laughter. It’s amazing how when I look into her eyes, and connect with her, I forget the worries outside. She has a way of healing our fear and disappointment. I can shut out the negative energy when I focus on the positive she gives me.

Follow Pepper’s story at UnSeizeTheDay. 

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A therapist finds herself in parent shoes

At five days old, Lucas Puchta had an MRI.  

He was born with a port wine stain on his face, which can sometimes be a sign of Sturge-Weber syndrome, a rare disorder where an excess of blood vessels is found on the face and the brain, causing an increased risk of seizures and other symptoms. 

Lucas’ mom Lizna was told that the MRI came back clear, “so I put it behind me,” she says. “Other than being told that he had a life-time risk of developing glaucoma due to the location of the port wine stain, he was developing normally.”

At seven months of age, a resident informally told Lizna that one of Lucas’ more recent scans looked like Sturge-Weber. At nine months, just two weeks after being formally diagnosed, Lucas had his first seizure. In the next 10 months he started bumping into things on his right, developed stroke-like episodes, absence and myoclonic seizures, and lost all skills, putting him in the first percentile for his age.

What was unique about Lizna’s experience was that she'd worked for 10 years with children with disabilities, mostly as an occupational therapist. “I had fought for my families when I worked in pediatrics, but could I fight for my own?” she asked herself. “I didn’t know if I could do this.” Lizna explains why it was so difficult to be on the other side of the fence.

BLOOM: You said professionals didn’t listen to you.

Husnani-Puchta: ‘Wait and see’ was always the answer we would get. That was frustrating because they talked to us as if we didn’t really understand much, or didn’t do our homework. It’s not a common condition, but I felt like I had to do all the educating. Over and over again, in hospital, we were asked: ‘So what is this condition?’ I’m in a hospital and my child is having a seizure. I’m sorry, but do your homework before you come in to see the parents. You have access to his health records. Look at them.

BLOOM: Did you feel your concerns were taken seriously?

Husnani-Puchta: No. After Lucas first went on seizure medication we noticed he was bumping into obstacles on the right side of his world. He wouldn’t notice food that was placed on the right side of his tray. I said ‘I don’t think he sees on the right’ but was dismissed. I was told it could be an effect of the meds and that it was hard to know because he was so young. Three months later, in emergency due to stroke-like episodes, we were told: ‘Yes, you’re right. He does have visual field defect’ which means he only sees half of the world.

BLOOM: What was it like to see Lucas lose the skills he had?

Husnani-Puchta: I broke down. I felt I had lost my son. His body was there but his personality was gone. My son is an engaging, social boy who loves to walk and loves to interact with his environment. He had signs, he had words, and he lost all of that. He didn’t respond to questions he knew like ‘What does a lion say?’ and there was a huge regression in his motor skills.

I would send e-mails to his neurologist and neurology clinic nurse and leave messages on voice mails crying, saying ‘You have to do something. The medication isn’t working. The meds just make him more and more sleepy.’

BLOOM: I understand Lucas had an emergency video EEG that showed that the disease had progressed from the left to the right side of his brain?

Husnani-Puchta: Yes. We were finally shown all of the EEGs and MRIs and we could see how the left side of his brain was shrinking due to the seizures. I was flabbergasted. They said he was a good candidate for surgery to remove the diseased portion that was causing the seizures and disconnect the left from the right part of the brain. He had the surgery a month after this meeting, spent 10 days in hospital and then was transferred to Holland Bloorview.

BLOOM: How did he respond?

Husnani-Puchta: Amazing! I have my son back. He’s seizure-free. Every week he is showing new skills. He smiles, he laughs, he engages and he knows how to get you to laugh. He’s walking, he has words, his brain is reorganizing and creating new pathways. 

He still has the visual field defect but he’s aware now, he’s present, he’s learning that things can be behind him. At our last family team meeting, specialists from the Canadian National Institute for the Blind sat in and they were shocked at how well he was doing with his vision. 

If you’re on the third floor everyone from the kitchen staff to nurses to cleaning staff know Lucas because he has his wave and he does his fly kisses and he says ‘uh oh’ and ‘go, go, go.’

BLOOM: Lucas had his surgery at 19 months. Do you feel he got it soon enough?

Husnani-Puchta: I think if he’d gotten an MRI with contrast dye sooner, and if we were taken seriously, and if there was more awareness among the various professionals about Sturge-Weber, maybe we’d be in a different place. Maybe he wouldn’t have developed seizures or his seizures would have been controlled better. It was almost eight months before Lucas was assigned one staff neurologist. Before that we were bounced around in the department and seen by a different neurologist each time. After my emotional plea around receiving appropriate care and the lack of improvement in Lucas' seizures, the department finally assigned us to one staff neurologist.

Other countries have programs in place to increase public awareness about Sturge-Weber: programs aimed at prevention, early detection and diagnosis, professional training and funding for centres of excellence. In the U.S. they have 10 centres of excellence where the doctors focus on research and treatment and everything to do with Sturge-Weber. I think I would have been taken seriously there.

BLOOM: Has this experience made you reflect on the families you work with?

Husnani-Puchta: I don’t know what would have happened if I didn’t advocate. If I didn’t cry. If I didn’t write e-mails. I don’t think we would have had that surgery as early as we did.

Going through that process has made me realize: What do parents do when they don’t speak English? What do they do when they just accept whatever the doctor says? What happens if they wait, like they’re told to do, and they don’t knock on that door? And it’s not just about the surgery. I knew the system. I knew to put Lucas on wait lists for speech and early intervention. I knew there were preschools for kids with special needs. But professionals didn’t tell me about them. I knew they existed because of my work.

BLOOM: When you return to work as an OT, how may you approach it differently?

Husnani-Puchta: I’ll be more empathetic, because I know what they’re going through. I am going to provide them with any tips and strategies and resources I can. And because I know they can’t remember everything, I will make sure I provide the information not only verbally but in writing as well.

BLOOM: How can we build empathy in professionals who don’t have first-hand experience parenting a child with special needs?

Husnani-Puchta: Actually listen. There has to be a course on listening. Because so often the follow-up questions we got indicated that professionals weren’t listening. I would list so many concerning things about my son and the response would be: “So how’s he doing otherwise?” It was like they didn’t hear anything I had just said. And they don’t read between the lines.

BLOOM: Did you feel that you understood your families before you had Lucas?

Husnani-Puchta: I thought I was empathetic but my level of empathy wasn’t where it is now. When a family is dealing with multiple issues in one child, as well as managing appointments, paperwork, funding, communicating with all team members and let's not forget about advocating, it’s a full-time job.

It’s so hard to do everything and get it done right and follow through with programming goals at home. I can see why families are so exhausted. When parents don’t do their homework it’s not that they don’t want to, or that they’re not complying.

I was exhausted mentally dealing with Lucas’ safety, with making sure I put on his helmet, with timing how long his seizures lasted, with deciding whether to give Ativan and/or whether to go to the emergency room, and on top of that was all the therapy stuff I could to be doing with him at home. 

But he’s not even present, I’d think, he’s not here. Why should I be following through with recommendations for his vision, speech, cognitive and motor development? I didn’t want to be his therapist. I wanted to be his mom.

BLOOM: I understand you want to create better awareness of what families go through?

Husnani-Puchta: I do have a passion to raise awareness and I am willing to talk to any parent, regardless of disability, to share with them the resources I know of. Because even when I knew my resources, I still had difficulties. 

For example, funding through Special Services at Home has been frozen since I began working as an OT. Yet most online information includes this as a possible funding avenue for children with special needs, giving false hope in my opinion. And the income cap for Assistance for Children with Severe Disabilities hasn’t changed in a decade, even given inflation in a city like Toronto. 

We were denied care for Lucas through Community Care Access Centre and not notified when he didn’t qualify for services. It was frustrating falling through the cracks of our health-care system and experiencing this firsthand.

I’ve got a Facebook group for Lucas and I try to post as much as I can. If just one family can learn from our experience navigating the Canadian health-care system, I’ll have done what I wanted to do.

BLOOM: What most helped you cope during Lucas’ illness?

Husnani-Puchta: I think finding a similar family to talk to. I found support groups a bit overwhelming, but through social media I was able to connect with another mom in Ontario whose child has Sturge-Weber and went through the same surgery as Lucas. We talked for an hour-and-a-half. I always asked to be connected to other parents at the hospital, but no one ever followed up.

BLOOM: I understand you have plans to create practical information for other families whose kids have Sturge-Weber?

Husnani-Puchta: There’s excellent information online about Sturge-Weber in the U.S., but nothing about the Canadian experience. Another parent and I would like to create resources for families in Ontario and then move across Canada. Our children are affected in so many areas. As an OT, I was fortunate to have worked in pediatrics. I knew about these resources. But most families are not in my shoes.

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'My little doll is a fighter'

Sadia Qureshi rarely leaves her daughter Zoya’s bedside at Holland Bloorview, where a dip on an oxygen saturation monitor prompts her to suction secretions from her daughter’s tracheotomy. But every other night her husband Saqib sleeps at the hospital and Sadia goes home to her 11-year-old son Humza.

On one of these nights Sadia was cleaning Humza’s room when she inadvertently picked up and broke a toy Lego car.

“Mommy, what have you done?” her son cried out. “He’s never spoken to me that way before and he was very angry,” she remembers. “I told him to relax, that he could make another one. And he said ‘No Mommy. You have NO idea!’

“I asked him why he was so upset and he said: ‘Zoya made that and I’m not sure whether she will be able to come home to make it again.’”

Humza’s sister had made the Lego car when she was a healthy French immersion kindergarten student who loved making her family cards with rainbows, stars and hearts; adored animals and Michael Jackson; and dreamed of a puppy of her own. That was before a sudden onset of intractable seizures that have kept her hospitalized for almost a year—sometimes on life support.

“That poor boy,” Sadia says. “I knew he understood that Zoya’s situation was very critical, but we were not thinking about him. I started to cry and then he started to cry. I told him ‘I pray to God she will come back to play with her toys again. And if you want to talk about Zoya, always talk about her with me. If you want to cry, I will cry with you. We will cry together.’”

Sadia says she and her husband had freely shared their emotions about their daughter’s life-threatening illness, but she realized this openness needed to be extended to Zoya’s brother.

“It’s so hard for us to hold our fears, our emotions,” Sadia says. “So we cry when we want to cry. And we encourage ourselves. We tell ourselves ‘Whatever happened, happened. And we have to move forward. We have to be here for Zoya because no one else can take care of her like us.’”

Sadia describes how her previously healthy six-year-old daughter woke one morning a year ago, a couple of days after having a fever, unable to speak, her body jerking. “She had been perfectly fine,” Sadia says. “The night before when I put her to bed she said: ‘Okay Mommy. Goodnight. I will see you in the morning. I love you.”

Sadia called 911 and soon they were in the emergency room. “Her whole body was twisted and shaking and I was not able to stand,” Sadia says. “I closed my eyes and collapsed on the floor.”

Zoya’s seizures began to come more frequently, some lasting several minutes. “They had to keep increasing the medication they were giving as it became less effective,” Sadia says.

The doctors had no idea why Zoya was seizing, and despite running all kinds of tests, they couldn’t find an answer. Zoya was intubated because she wasn’t getting enough oxygen during seizures and a feeding tube was placed.

With no answers and no solutions, Sadia’s father-in-law, an anesthesiologist, suggested that they try Propofol, a commonly-used anesthetic in adults. “He told them: ‘When you want to stop seizing, you have to put the brain to sleep,’” Sadia says. “The doctors said they hadn’t used it in kids and that it could cause death. But my father-in-law said if we let her continue to seize, she’s going in that direction anyway. At least we can say we tried.”

The treatment was given and drastically reduced Zoya’s seizures. However, it didn't eliminate them. “We didn’t know whether she would make it out of this,” Sadia says. For two months the parents took turns sleeping upright in a chair in the neurology observation room, while nurses worked around them on four patients.

Zoya was moved to the complex-continuing care unit at Holland Bloorview with the goal of slowly weaning her from heavy seizure medications. “The doctors can’t say what her end condition will be because she’s on so much medication,” Sadia says. “Zoya is not able to speak, but can open her eyes and look around and can move her arms and legs. They can’t say whether her [current] condition is a result of the meds or of [brain] damage,” Sadia says.

Weaning from the seizure meds is a slow process with no timetable because withdrawal seizures are a side-effect and illness can retrigger the seizures.

Sadia says it helps her to be fully involved in Zoya’s care, which includes getting up every hour during the night to suction her. “It gives me a kind of satisfaction because I know I am doing my best. Zoya can feel me here and this is part of her therapy. I talk to her.”

She relies heavily on her family. Sadia’s retired father came to Toronto from Pakistan to help care for his grandson and “has been the biggest help. Babysitters are expensive and because I had to quit my job, we couldn’t afford them.” Sadia says her father is also a wonderful sounding board on the evenings when she sleeps at home. “Sometimes I have to talk and some things I can’t discuss with my son.” 

Sadia says she’s lost contact with many friends. “I can’t relate to what is going on in my old world,” she says. While friends offered support when Zoya was first hospitalized, it petered out over time. “I don’t ask for help and that’s okay because I have enough to worry about.” She said one or two friends have stuck by and she appreciates them. “They don’t expect me to be normal.”

Some of her best support has come from Zoya's school. “Her teacher visited in the ICU and her friends have sent so many cards and so much love to Zoya. They did a marathon in honour of Zoya and talked about her strength and how she is fighting this disease. Her teacher is still coming and she made me a special book with all of Zoya's school pictures and her drawings and journal entries. It is so precious to me.”

If she takes any time for herself, Sadia says she feels guilty. “I pray, and that’s the only thing that helps. We are Muslim and I have my praying mat here beside Zoya’s bed. When I pray I am talking to God and giving my burden to him. That’s the only thing that releases my burden, and makes me feel that I’m not alone.”

Sadia says she enjoys speaking with other parents on the unit. “Even though their situation may be different, in the end they are feeling the same as I am—they are feeling pain for their child.”

She says it’s important to stay focused on small signs of progress Zoya has made. “It reminds me of the ups and downs, and how we survived and had hope during the worst times. We were initially told she would be on the ventilator for the rest of her life. But one day a respiratory therapist noticed that Zoya was breathing on her own, even though she was in a coma. We were told she would never open her eyes, but she is opening her eyes. We were told she would never be able to move, but she is able to move. She is improving and I know she's trying her best to get out from this condition. My little doll is a fighter.”

Sadia says encouragement from staff gives her strength. “Without encouragement, I question whether I am doing enough, or doing the right things. I am so lucky. My experience at Holland Bloorview has been amazing. Even the cleaners, while mopping the floor, will ask how my daughter is and how I am doing. Just saying these words can make my day.”

She says it’s important for staff to remain positive, even if parents become impatient or demanding. “They need to remember that the parent doesn’t come here willingly, they’re not enjoying the situation. Parents want help. Sometimes parents become stressed and demand things. Sometimes they are out of their mind. But if they don’t get a positive response from staff that will just increase their anxiety.”

For staff that has trouble relating to what a family is going through, just taking a minute to be present and listening helps, she says. “Be there. Listen and say ‘I can hear you and I hope things become better for you.’ Encourage parents that they are doing their best and to keep doing it. This builds our strength.”

To other parents she says: “Don’t give up your hope. Stay together as a family and be there for each other. I need my family more now than I ever have. Take things day by day. Be thankful. We are so thankful that Zoya is still with us.”

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