Monday, July 17, 2017

Foundation helps disabled students 'just like me'

By Louise Kinross

After a skiing accident that injured her spine and shoulder, Tamara (Tammy) Gordon had to learn to write with her opposite hand and get around in a wheelchair.

While studying at York University, her mom Marcia attended class with her to take notes.

That’s where the pair noticed how hard it was for other students with disabilities to manage the extra expenses they had at school.

“Some of them were in school for years, because they had to take breaks between courses because they didn’t have enough funding,” Tammy says. “Others had to drop out because of the costs of taxis, tutoring or special equipment that would put them on an even playing field with other students. My mom and I thought ‘Why not start a foundation in my name to help other students just like me?’”

In 2013, The Tamara Gordon Foundation received charitable status. Each year it offers grants from $750 to $3,000 to university or college students with physical disabilities in Ontario.

“My advice to students with disabilities is don’t give up and continue your education because that’s the key to life,” Tammy says. “Work hard, get your high school credits and pursue post-secondary education.”

That’s what Tammy, now 31, did.

At 16, she was an elite basketball player who was being scouted by American universities. Then she became partially paralyzed as a result of a skiing accident.

She lived as in inpatient at Lyndhurst for five months. “It was very long and very hard,” she says. “Before my accident I was left-handed, but I sustained a brachial plexus injury to my left shoulder and lost the use of my dominant hand. So I had to learn how to use my right hand.

Tammy continued with school onsite and her mom decorated her room “so it looked just like my room at my house,” she says. “I had teddy bears and cards from classmates and teammates, and I even used my own special blanket from home on the bed.”

Daily pain was the biggest challenge, she says. “I definitely wasn’t used to that. Pain medication didn’t really help me, so I’d just try to fight through the pain. After a 12-hour surgery, I had to wear a special back brace for a good while that was very uncomfortable. The process of learning to sit up again and transfer to a chair was long and tedious.”

Something that helped Tammy adapt was talking to other patients who were further on in their rehab journey. “I definitely think it changed me as a person,” she says. “Although I played sports before the accident, I was really shy. The accident really brought me out of my shell. Although I wasn’t among people my age, I was able to talk to the other inpatients at Lyndhurst and learn from their experiences. Later on I got into motivational speaking where I talk about my experiences and encourage others, no matter what they face in life, don’t give up. Even if something like this happens to you, you can still achieve your dreams.”

After her rehab, Tammy tried to return to her old high school, but it didn’t have an elevator large enough to fit her wheelchair “and being around my old friends was tough. It was too hard for them to see me in a wheelchair. Some of them almost took pity on me and felt sorry for me. And others couldn’t make eye contact with me. That was even worse.”

She transferred to an accessible school but then became ill and had to finish her high school through a home program. “I still managed to finish on time with my graduating class.”

Today Tammy works at her foundation as well as being a customer relations coordinator for TD Bank. “I love working at TD because I’m treated like everyone else,” she says. “ Yes, I do need some accommodations in regards to my work station and personal assistance. TD is an awesome company to work for and I’ve been there 11 years.

Tammy says recipients of her foundation’s grants are chosen based on community service and grades. The foundation is holding its first fundraising gala on July 29.

She says her mom played a big role in her recovery after her accident. “Parents, be strong, because we feed off your energy,” she says. “Stay positive and be encouraging. Whatever dreams your child has, let them know it’s possible to achieve. It might take longer or be a harder struggle, but they can get there with the right support and encouragement.”

Tuesday, July 11, 2017

Don't let feeding tube get in the way of fun

By Louise Kinross

Over the last year Jennifer Choi Han made 10 videos about family life with a child with severe disabilities who is fed real, blended food through a g-tube. The videos feature Andrew, 7, who has cerebral palsy, and his twin Eleanor, their sister Jane, 5, and brother Mikey, 3.

In the videos, the family, who live in Long Island, go to The Nutcracker ballet, visit a fall festival, spend a day at the beach, check out a candy store, go to a barbecue and meet Santa Claus. The videos show Andrew eating the family’s breakfast, after it’s blended, at home before leaving, and the meals his family feeds him while out, wherever they happen to be. The music is upbeat, the kids are happy, and Andrew is integrated into everything they do.

It wasn’t always this way. Back in 2012, Jennifer wrote a piece for BLOOM about how miserable life was when they were feeding Andrew formula prescribed by doctors. It exacerbated his reflux, and Andrew spent his days retching, vomiting, not sleeping and losing weight. He even stopped smiling. “He was so unhappy because he was so hungry and wasn’t sleeping and had many, many seizures,” Jennifer says. “I never expected to take him out in public places, to actually go out and enjoy being out. Our vacations were disasters.”

BLOOM interviewed Jennifer about her video series A Day In The Life with Cerebral Palsy and a G-tube and how much their life has changed since they switched Andrew to a diet of real, blended food.

BLOOM: Tell us a bit about Andrew.

Jennifer Choi Han: He has spastic quadriplegia and controlled epilepsy. He’s also blind and doesn’t speak. But we know when he’s happy and sad and when you’re around him, you learn his language. He’s a very giggly boy and he responds to touch and sound. He loves music and he loves people. When people talk to him he responds with moans, and the conversation goes back and forth like that. If he’s bored he’ll sigh. We go to church every Sunday and he always sighs in the middle of the service. His siblings play with him and sing with him. Right now the kids love the Troll soundtrack from Disney. It makes Andrew freak out in happiness and he’ll sing along and laugh and kick. Andrew loves school because he recognizes voices and is very sociable. He’s the happiest of our four children.

BLOOM: Why did you start your video series?

Jennifer Choi Han: For a very practical and utilitarian reason: I wanted to raise awareness that there’s something called a blenderized diet and I have a strong belief it should be a treatment option for severe reflux. It’s also a healthy way of living with a feeding tube. In my mind, it saved Andrew’s life. After the BLOOM article I received lots of comments on my blog and I knew people were going to the site because they wanted to do the blenderized diet. I had it tucked in my mind that one day I would make videos about how we did it. Recently I was ready because my kids were older and Andrew had been medically stable for a few years. I wanted to make videos that have a very warm and cheerful vibe.

BLOOM: They are fun and upbeat and full of happiness.

Jennifer Choi Han: Learning about Andrew’s brain damage was completely devastating. In my mind, it was the worst thing that could happen to a family. In his first years, Andrew was sad and miserable. I scoured online forums looking for stories of families and trying to predict what his future held. I watched three videos on YouTube and I cried my eyes out. One was of a little girl who was in a diaper prone on a mat, moaning, and people were watching her. Another was parents talking and sad music in the background.

What started off as practical videos shifted to ‘a day in the life’ videos that offer a narrative of hope about a child who’s happy and out and about, enjoying the world and seen by others.

BLOOM: Many of your videos are in New York City. Isn’t that a challenge for accessibility?

Jennifer Choi Han: It’s not super accessible, but it’s doable. When we go to the city we always make sure to drive and avoid crowded places. We go to big, spacious places. Touristy places tend to be more accessible. For example, Central Park is fairly accessible. We took Andrew to the ballet and he really enjoyed it because he loves music. We take Andrew to the pool regularly because kids with cerebral palsy are happiest in the water. Usually I research stuff like crazy before we go.

BLOOM: In one video you’re on the subway.

Jennifer Choi Han: That’s the recently built Second Avenue Subway line. It’s outrageously accessible with ramps and elevators and even a wheelchair boarding area by the conductor’s window. Unfortunately, the other lines aren't stroller or wheelchair friendly. When Andrew was younger I would check online to plan ahead, but even stations that were supposed to be accessible weren’t because elevators were broken or something hadn’t been updated. So we stopped using the subway.

BLOOM: You said you rarely see other people with disabilities when you go out.

Jennifer Choi Han: I suspect that’s because of the whole bathroom situation. There are not a lot of accessible bathrooms—unless you’re okay putting your loved one on the floor. We’re lucky at this point because Andrew is very small. We can change him in the car. Sometimes we carry a sheet and change him on a park bench while my husband or his siblings hold up the sheet for privacy. As Andrew gets older, the bathroom thing will become a big issue because I need to preserve his dignity.

BLOOM: In the videos, you feed Andrew in public, wherever you happen to be. Is that intentional?

Jennifer Choi Han: Yes. I feel very strongly that people with disabilities need to be seen. Disability is part of the human experience. I never see disabled people out and about, and I feel in order for the world to be more open and inclusive, and to not fear disability, everyone needs to see each other. When Andrew was young, I was very self-conscious about stares and about what I was doing, but now I’m not at all. I own this role we’ve taken on and I see the benefits.

We talk about the ‘Andrew effect.’ When we go out with Andrew, children come up and stare and ask questions like ‘What’s wrong with him?’ I love when they ask questions because I can help answer them. I’ll say ‘You know how you or I drink or eat with our mouth, and then it goes down our throat and into our belly? Well, Andrew’s mouth doesn’t work well, so his food and drink goes straight into his belly.’ If they ask why, I say ‘Andrew has a boo boo on his brain, so he’s not able to use his mouth as well.’ It makes so much sense to a little kid. There are also lots of kid-friendly parts of feeding Andrew, so I’ll ask ‘Do you want to help?’ They can put in the water or hold something for me.

My youngest child, Mikey, is a ham and he’s very perceptive of other people’s reactions. If strangers stare, he’ll go up and hold Andrew’s hand, cuddle with him or kiss him and sing songs.

BLOOM: Feeding Andrew looks easy in the videos. But isn’t there a lot of planning? How do you make sure the food doesn’t go bad?

Jennifer Choi Han:
The crazy thing is how easy it is. I hate cooking. My three-year-old could tell you how to feed Andrew. When I first started out, I was taking home-made blends out, and that requires bringing ice packs and keeping the food cold. But now that there are pre-made, blended products on the market, we don’t need to pack ice or worry about food spoiling. These products are shelf stable for two years.

So if we’re at the beach, I’ll open a pre-blended package that might have salmon, oats and squash in it. The only supplies you need are a syringe, extension tube and a plunger to push the food through. I take a zip lock bag and put one meal plus all of the supplies, including bottled water, to flush and clean with. If we’re out for the entire day I’ll have four meals bags. It’s not onerous at all. In fact, it’s much more onerous getting snacks for my other children.

The two premade products I use are called Real Food Blends and Functional Formularies.

BLOOM: How have people reacted to the videos?

Jennifer Choi Han: When I made my first two-minute video, which was about how I bolus real food through a feeding tube, I expected maybe 100 views. Within the first week there were 1,000 views. Now there are over 6,000 on that video. People started to private message me to thank me, ask me questions and tell me how life-changing the diet had been for their child, which was very gratifying. My first 'day in the life' video has over 11,000 views. Who would have thought a video about cerebral palsy and feeding tubes would be viewed over 11,000 times? But the focus has moved from feeding tubes to a well-lived life.

BLOOM: You always look relaxed and energetic in the videos. Isn’t it physically exhausting managing Andrew’s needs and your other children’s needs

Jennifer Choi Han: There are two reasons I look quite refreshed: Andrew is happy and stable and I have a lot of resources. My mother lives with us and I consider her a primary caregiver as well. We also have a full-time nanny on top of that, and my husband is super hands-on and helpful. I work full-time as a teacher and my workplace is a two-minute drive from home. My husband is a physician, so with our two incomes, we have a lot of options.

It takes a village, and I have a village. A lot of parents, especially in the United States, don’t have a village. They don’t have resources, and that’s where things fall apart. When I strike people as refreshed and cheerful, I’m quick to tell them it’s because I have time to myself. My situation is not available to a lot of families. With our new administration, I’ve been taking part in a postcard campaign and making calls to legislators about health care.

I never could have imagined we would be at this place during those hard, early years. I really like my life now. I really like being Andrew’s mom and I love Andrew to pieces. It’s very therapeutic for me to make these videos and to view them.

Friday, July 7, 2017

'He takes the time to hear me'

By Louise Kinross

John Kooy (left) is an orthotist at Holland Bloorview known affectionately as “Dr. John” to some of his patients. Here’s how a couple of Holland Bloorview families describe him:

“Dr. John is always so nice to Lucas. He always has toys for Lucas to play with and shows great patience with him. He's always polite and asks Lucas if he can look at his leg and foot before holding Lucas’s foot. He really puts Lucas at ease. He's one [professional] that Lucas isn't scared of!” And from eight-year-old Jillian (centre above, with Dr. Mark Camp right): “He's amazing! He takes the time to hear me and make amazing ankle-foot orthoses!”

John is the team lead for orthotics at Holland Bloorview and collaborative practice leader for orthotics and prosthetics. He’s been with us for 16 years.

BLOOM: How did you get into this field?

John Kooy: I went to York University with the intention of getting a bachelor’s in physed and going into sports medicine. But it wasn’t what I thought it was. So I dropped out of university and worked with a private swim school. I’d been a swim instructor and life guard since I was 16 on the lake where my family had a cottage. At the same time, I started looking through school calendars at other programs and came across the prosthetic and orthotic program at George Brown College. I did a two-year technical program, a two-year clinical program and then a two-year residency. You learn prosthetics and orthotics in the program, but I chose orthotics because that’s where I got a job.

BLOOM: What is an orthotic?

John Kooy:
It’s an external support commonly referred to as a brace. It’s used for improving function, correcting a deformity, or stabilizing or protecting a part of the body.

BLOOM: What’s the most common kind?

John Kooy: Ankle-foot orthoses (AFOs). They’re used by kids who have neuromuscular or musculoskeletal conditions like cerebral palsy, spina bifida, muscular dystrophy or arthrogryposis.

BLOOM: So you started out at West Park working with adults. What was it like to come here and focus on kids?

John Kooy:
It was a big change, but I’d spent many summers running swimming lessons when I was younger.

BLOOM: What do you like about working with kids?

John Kooy: It’s the challenge, the passion, the fun.

BLOOM: What do you do as collaborative practice leader?

John Kooy: Help to put structures and mechanisms in place to create a collaborative environment. An example is the centralization of the electronic medical record. Prior to going with that, all of our documentation in orthotics and prosthetics was separate and hand-written.

BLOOM: How does the electronic health record improve collaboration?

John Kooy:
It improves transparency and communication because you can easily refer to other clinicians’ notes and access reports from SickKids. One of the big ways it improves timely care is when a child gets admitted post-operatively from SickKids. We have easy access to the physician’s orders, so we can plan for what they need and when.

BLOOM: How many children would you see in a day?

John Kooy: Between three and five. I also see adults, so I see them through the life span.

BLOOM: How do you create orthotics?

John Kooy: It starts with an evaluation and watching them walk.

BLOOM: Then you do casting?

John Kooy: We call it shape capture now. So the client either steps onto a foam impression or we use special tape that’s wrapped around the limb and held in place until it cures. That gives us a negative impression of the limb and then we turn it into a plaster positive model.

BLOOM: That’s what you do in the white room, which is like a workshop?

John Kooy: Yes, the white messy room. We work with the model of the limb to sculpt or shape our final orthotic or prosthetic.

BLOOM: Is the white residue in the air from the plaster?

John Kooy: It's predominantly plaster. We sculpt the plaster models with various rasps and carving tools. We add and remove plaster as needed from the model to ensure proper support without putting too much pressure on bony areas, as well as defining the final shape. We then use sanding paper and screen to smooth the final finish.

BLOOM: What’s the benefit of making them on-site?

John Kooy: We can better control the process for quality and when clients need adjustments, it’s easier to do it in house.

BLOOM: What’s the greatest challenge of your work?

John Kooy: One of the greater challenges is you can’t expect a typical day. Something always happens outside our schedule—whether it’s a child in a clinic that needs to be seen for an evaluation while they’re here, or a new inpatient that’s having problems with a post-operative cast. These are things that aren’t in the schedule.

BLOOM: Are there other challenges?

John Kooy: Maintaining clear communication and understanding and inviting everyone’s perspective. Not looking at everything as a cookie-cutter scenario, but realizing that everybody has different opinions and goals and needs and wants. We may hear the opinion of the therapist or physician and then meet with the family and client and they have a different idea. So we might have to circle back and ask the therapist ‘What do you think about x?’

BLOOM: Isn’t the experience of getting fitted for orthotics frightening for some kids?

John Kooy: Anxiety is definitely a challenge.

BLOOM: What do you do to manage that?

John Kooy: Everything from getting down to their level to finding ways to engage them in the process and make things fun. For example, if I’m shape capturing with the tape, I’ll give them a pair of gloves to put on as well. We get to know them and ask about what happens outside—at school, on the weekend, or when they go on vacation. We see them over decades, easily four to five times a year, so we get to know them very well.

BLOOM: You’re very calm.

John Kooy:
Calmness is something I am recognized for. Not too many things get me wound up. I’ve always said that I'd never give up my clinical work because it’s stimulating, it’s engaging and there’s value in having that perspective of being on the frontline when you’re a leader.

BLOOM: What do you love about your job?

John Kooy: The energy. The stimulation of watching the kids change as they reach various goals. They’re excited to tell you about it. Just now as I came through the second floor waiting room to come downstairs one of my families was waiting for a clinic. The client told me how great school is and his plans for the summer, and the mom said how much of an improvement she and the teachers in the school have seen in his overall function for walking, balance and movement.

BLOOM: What skills do you need to be good at making orthotics?

John Kooy:
Creativity. You have to be open to ideas. Empathy. A good listener. You need to be able to visualize in 3-D. You need to be able to see that end product before it’s there.

BLOOM: Is it an art?

John Kooy:
There’s definitely an art and hand skills in the fabrication side of things. I do some fabrication, but for most of it I rely on the technical team behind the scenes.

BLOOM: What’s the biggest change in orthotics since you came here?

John Kooy: How we customize the orthotics with pictures and patterns. That’s huge. The kids get to select a pattern or image. It could be a sports team or a character from movie or TV. A couple of kids who are keen artists have provided me with an image of their art work that we’ve transferred onto the orthotic.

It’s gone from ‘This is what you get, and we can put a blue pad or a pink pad in it,’ to ‘The sky is the limit, let your imagination run wild.’ My team has rarely come up with something they can’t do.

BLOOM: Why is personalizing orthotics important?

John Kooy:
It allows children to express their identity. We’ll often hear kids in the school comparing what they have on their orthotics: ‘What did you put on yours?’ We did have one problem with a child who chose a skull and crossbones, which his school felt was inappropriate. We had to change that one.

BLOOM: That’s funny. Have your thoughts on disability changed over the years?

John Kooy: I don’t know that they’ve necessarily changed. I think there’s still a lot that needs to be done with access and what happens outside of here. Looking at the [physical] environment, and looking at the transition to adulthood. We see the adult population in our area, so that puts us in a unique position. As we’re evaluating change in terms of the hospital’s transition strategy, we need to be part of that conversation.

BLOOM: What happens to clients when they graduate?

John Kooy: They’re living in the real world where they can’t find a care team to really understand what they’re looking for. I wish they could be connected with someone who has the same level of understanding of their condition that they find here.

Some will advocate more for themselves, and others will drift back into that black hole and say ‘that’s the way it is.’

BLOOM: And then they develop secondary health problems. It must be frustrating for you after working with them for so long.

John Kooy: Yes. In talking about disability, it’s not what needs to happen in here. It’s ‘Wow, what more could be done beyond here?’ I try to be a listener, and help adults work through their thoughts and ideas.

We play an important social role in their life. That’s how typical days turn out not to be typical days.

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

John Kooy: Better funding for technology. Right now AFOs are covered under Ontario’s Assistive Devices Program, but shoe modifications, in-the-shoe orthotics and some other orthotics aren’t.

BLOOM: I know how expensive those are, and they’re often not covered under a parent’s health insurance at work. If you need a lift on your shoe because one leg is shorter than the other, or in-shoe orthotics because you walk on your ankles, those are medical, functional needs.

John Kooy: The other thing I’d like to see is a change in recognizing the types of disabilities that can receive technology. For example, autism isn’t a recognized disability to receive a custom protective helmet.

BLOOM: Is it just kids with seizures who are approved for that?

John Kooy: Yes. If we need to create a custom protective helmet for a child who self-harms, the entire process costs from $300 to over $2,000.

BLOOM: What emotions come with this job?

John Kooy: I don't think there isn't an emotion. Happiness, laughter. Sadness when you feel it's been a stressful day for a family or a child is in pain. Some of the treatments are going to elicit pain or discomfort or anxiety. A lot of the times you have to block that out, knowing that a treatment is needed and that we'll work through it together. In the end, we'll find a way, maybe not at that appointment, but at the next, to laugh about something.

BLOOM: Do you do anything to help you cope?

John Kooy: I enjoy outdoor activities like skiing, sailing, biking and hiking. I like to travel. Also, Holland Bloorview is such a great family environment among teams and across the hospital that there are always opportunities to share a story or a laugh.

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Wednesday, July 5, 2017

Mom seeks to light the way for others

Photos by Storey Wilkins

By Louise Kinross

Narges Karbasi
can only think of one medical interaction that wasn’t helpful when she learned her daughter Lilly had a rare genetic condition called 1p36 deletion syndrome.

“At her first birthday the neurologist gave us the results of a microarray test,” Narges says. “He said ‘This is the name of the syndrome, go and google it.’ He didn’t tell us about it. We googled it and we were in shock, because you always see the worst things [online]: she’s going to die, she’s going to have heart problems. It was the worst experience.”

But soon after, Narges spoke with clinicians, other families and even acquaintances that gave her back a sense of hope.

“We took her to the pediatrician and I was crying. I said ‘Did you see the report? She may not walk, she may not talk.’ The doctor said ‘Yes, she may not walk and she may not talk. But she can love.’ I thought yes, Lilly wants me, she loves me. These are the words that helped me a lot.”

After getting Lilly’s diagnosis, Narges and her husband Farhad initially kept the news to themselves. “It was like a grieving,” she says. “Before telling the world, we cried with each other and we screamed and shouted and said ‘why?’ When we told people, we wanted to talk about it in a very normal, happy way, because we thought if we cry or are sad, people will always look at her and think ‘poor baby.’ At first it was so difficult to talk about. I practised on people I don’t know. In the street, in the park. That helped me get used to the words so I could tell close family.”

Narges searched online and found a Facebook group for families of children with 1p36. “The moms there are amazingly supportive,” she says. “They have children from newborn to 40 years old. I can say that each is a doctor, a geneticist, because of all they know. You can ask any question and within a couple of hours you have hundreds of people responding with their experience. The other thing that helped me was seeing that there were so many parents who had adopted kids with the same syndrome. It’s one thing when this is my kid. But for parents to adopt not one, but two children, with this syndrome, and they have a happy life.”

One day Lilly was out in a stroller with a babysitter. A neighbor who was driving by stopped to ask the babysitter if Lilly was walking yet. She wasn’t, as her motor skills were delayed. The neighbor wrote a note for the sitter to give to Narges with the name and phone number of a physiotherapist who did Medek and had helped her daughter. “At first I didn’t like it when I got the note,” Narges says. “I thought why is she doing this? Then my husband said give her a call, maybe this is a sign.”

Lilly, who turns five next month, began walking last year, and Narges attributes it to the Medek therapy. “She couldn’t even roll or sit from lying when she started,” she says. “We are so excited for this summer because it’s the first summer she can walk. Lilly is a happy girl who loves to be independent. She fights for what she wants and she gets what she wants—it doesn’t matter if you understand her, or if she can’t say it, she will get it. She enjoys being outside and we’re so excited about having her first birthday party outdoors.”

Through the physiotherapist, Narges learned about the babies group offered through Holland Bloorview’s Play and Learn. Parents and babies attend weekly for sensory and motor play and live music. “Seeing so many moms like me and kids like Lilly was a great first step into this new world,” Narges says.

Every month an infant development specialist came to visit Lilly at home. “That service is so helpful. They come into your home and see how you live, and help me with specific things. For example, Lilly is very sensitive with what she eats, so the person made an appointment to come at her snack time so she could help with snack.”

Lilly then spent two years at Play and Learn nursery school. “It’s amazing. It’s like her home and she likes everybody. They plan for each kid and they love their jobs. The teachers even check on me, too. They’ll say: ‘How are you doing? Why are you not smiling today?’”

Lilly uses sign language and pictures to communicate and is attending kindergarten in our integrated education and therapy program in September.

Narges says she’s learned to live in the moment. “I stopped thinking of the future. If today Lilly is waving or pointing, a point is a word you can live a life with. I enjoy that moment without worrying about what should be next. There is no ‘what if’ in my mind anymore.”

Narges, who moved to Canada from Tehran, Iran with Farhad in 2009, says Lilly’s syndrome has brought the couple closer. “Our bond and love is way stronger. When you know you have a shoulder to lean on and someone who is always there to talk to, it helps. Being a believer in God has also helped me a lot. I said “If that’s what God wants for me, I should be on board.”

Narges says she prefers not to use the terms disability or special needs. “What I like to call it is unique, because I learn that every person is unique in his or her own way.”

Lilly has an older brother Dylan, and Narges says it’s important for him that the family “fights to be happy and to have as close to a normal life as possible. Disability minimizes the thing you can do, but as a family we never accept no for an answer. We never say, ‘okay, that’s not for us.’ Everything is for us. We always try to find a way. For example, we like to ski as a family, and through searching everything my husband found something Lilly can sit on and we can still ski together. Travelling isn’t easy, but we should do it. We don’t want Dylan to think ‘we can’t do this like my other friends because of my sister.’ We didn’t want his life to be on pause. We say this is the life we have and we try. If we can, we can. When he was younger, Dylan questioned why Lilly wasn’t walking or talking. That was a challenge not to minimize his feelings.”

Narges believes Dylan has developed many positive attributes because of his relationship with Lilly. “These siblings are going to be different kids. They’re going to be caring. I see how Dylan cares about his friends, how he sees people equally. He never points at someone who has a disability because he learns that that is who that person is.”

Narges likes to pair times when she takes Lilly to therapy with an activity Farhad does with Dylan. “So I will say ‘If you are playing football, Lilly will have speech therapy.’ She has a program and he has a program.”

Narges is a big believer in self-care for parents. “We need to do something we really like, even if it’s just for one hour a day. When Lilly went to Play and Learn each morning, I’d make a joke that the only thing I didn’t do is go to Tehran and see the family. I shop, I hang out with friends, I go to the coffee shop, I walk or go to the gym. Those two hours are mine. They become the best time of the day. We should find a time for ourselves, even doing nothing, but being on our own.”

Narges says next year when Lilly is in school full day, she’d like to volunteer at Holland Bloorview to help other parents. “They need to see one mother or father or family and say ‘they are happy, they have a happy life.’ That’s the most helpful thing. When you see a mother in real life who is laughing, dancing, having her life—it doesn’t matter how her kid is doing—she is happy and you think ‘Oh, maybe one day I can be that person.’”

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Friday, June 30, 2017

Mom writes book to help kids talk about differences

By Louise Kinross

“This is me,” Sheriauna said proudly when she saw the book her mom Sherylee Honeyghan had published.

The cover is of a young black girl wearing a tiara, smiling at herself in the mirror. She has one hand.

Growing up, Sheriauna, now 10, didn’t see herself in the books and toys around her. Dolls “aren’t black, don’t have hair like me and have two hands,” she’d tell her mom. The only time Sheriauna saw herself was when she drew her own pictures. “She always drew herself without her left hand,” Sherylee says, noting that she was born with an amputation below her left elbow.

I am Sheriauna is a new children’s book Sherylee wrote six years ago, when Sheriauna was four.

“When she was younger she didn’t have the vocabulary and emotional regulation to explain 
this is why I am the way I am,” Sherylee says. “If children stared or asked what happened to your hand, she’d get frustrated and would cry. I wanted to open a conversation between children and the adults in their life where they could start to understand what an amputee is, and that people with differences are people, too.”

The book covers Sheriauna’s birth and her first prosthesis, fitted at Holland Bloorview. It talks about the things she can do with her prosthesis, and the things she does better without it. “It includes her encounters with other people and how that made her feel,” Sherylee says. “I explain why people might stare or be curious, because she doesn’t look exactly like them. The message is that we’re all different, and the world would be a boring place if we were all the same.”

When Sheriauna was small, Sherylee taught her to say “I was born this way and I’m special” when others asked about her arm. “When we were raising her, we always told her ‘God made you this way and everyone is different in their own way.’”

Sherylee says she wrote the book with simple language, from the perspective of a four-year-old, so that it’s easy to understand.

Today, Sheriauna is a social butterfly who adores hip-hop and loves to help others, her mom says. “She’s at the age where she can be her own advocate and participate in conversations. She’ll be involved in promoting the book and the message behind it.”

Sherylee hopes to launch a website for the book in the next couple of weeks.

She encourages parents to talk openly with children with physical differences. “My advice, first and foremost, is don’t shy away from the conversation with your child. From the get-go I would always roll up Sheriauna’s sleeve, for her mobility and accessibility. The social worker told me ‘You want to let her know that it’s okay to show your stump, to roll up your sleeve, and for people to see that there’s nothing wrong with what’s there.’”

Sherylee says that while it’s natural to want to protect your child, “the reality is that we can’t be there every minute. We have to equip them with the vocabulary, understanding and messaging to take with them, to get them through awkward moments and to feel more empowered.

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Wednesday, June 28, 2017

A dad's view of the NICU

By Louise Kinross

Bob Moran is a political cartoonist for The Telegraph newspaper in Britain. In 2015, he illustrated a heartfelt memoir about his daughter Poppy, who suffered a brain injury during birth. Father’s Days contrasts how he imagined his new role as dad with the terror of seeing his critically ill newborn hooked up to machines. It’s been viewed millions of times around the world and is used to train clinicians in neonatal intensive care units. This year on Father’s Day, Bob released a sequel about his family’s first trip abroad: Father’s Days at Sea. His daughter Poppy is now four. “She’s happy, she’s cheeky, she’s determined,” he says in the second video. “She also has cerebral palsy and epilepsy.” BLOOM spoke with Bob about the process of illustrating his life parenting a child with a disability.

BLOOM: When did you start drawing the story of Poppy’s birth?

Bob Moran: The idea came about when she was two. A newspaper colleague suggested I create a long-form piece done in cartoons that would be something autobiographical. It would take a difficult subject and do it in cartoon form to make it more accessible and easier to talk about. I said the only thing that would be suitable is the birth of my daughter. But to begin with, I really didn’t want to do it.

BLOOM: What were your concerns?

Bob Moran:
I didn’t feel comfortable about sharing something so personal and I was aware that I hadn’t dealt with a lot of it myself. I was nervous about confronting the memory head on like that. Another thing that worried me was the awareness that families who’ve been through this all have a slightly different story, and their children have different diagnoses and levels of ability, and I was aware that it had to be sensitive to all of that. Ultimately, I realized that the emotional journey everyone in this situation shares is similar.

BLOOM: The video is so moving because it’s so candid. You contrast how you imagine fatherhood will be with the shock and helplessness of learning your daughter is fighting for her life.

Bob Moran: Not many people had heard that story from a dad’s point of view before. A lot of the correspondence I got was from other dads saying it really helped. You shouldn’t generalize, but I think men tend to find it harder to face up to the emotions of things like this, and there’s that sense as a dad that you’re supposed to be strong and hold it all together. That struck a chord with dads and enabled them to start talking about the fact that they felt the same way I did. They felt quite helpless.

BLOOM: What was the process of creating the illustrations?

Bob Moran: Recreating it in so much detail was like a form of therapy for me. The first thing I did was look at all the photographs we had taken. We’d taken a lot of photos when she was born and then during the two weeks we spent in intensive care. I had deliberately not gone back to look at those. I had to look at them for reference, but also to help trigger my memories of how I was feeling. That, in itself, was very difficult.

It made me start to realize there were a lot of feelings I hadn’t processed. I had to work out a way of telling the story that dealt seriously with the emotions, but with a visual style that was gentle and accessible. I had to create myself as this central character that was slightly clueless and awkward.

BLOOM: Because you’re so honest, there’s so much humour in the story. I love the part where the nurse is basically ordering you out of your wife's room because you can’t cope.

Bob Moran: For a long time it was sillier. It went through lots and lots of versions. I worked on the whole thing for about eight months. I think in total I did over 200 drawings for it. For a long time there was more of that silly, outlandish humour. Then we figured we needed to strike a balance with that to hit the right emotional note, so we came back to sensitivity. We didn’t want to make it too silly.

BLOOM: Did you have dedicated time to work on this project?

Bob Moran: It was in addition to my regular political cartoons. It was a good change because it was a complete change of head space and subject matter. To be working on something completely personal and apolitical was refreshing.

BLOOM: But you were doing it on top of regular work?

Bob Moran: It did get stressful at points. More for my wife, Sally, because I don’t think either of us realized how long it would take. As the video explains, we were so busy with Poppy and our days were filled with hospital appointments and therapy. So in a way trying to create this project was very difficult to balance with being a dad and looking after her.

BLOOM: What is it about illustrations that enable you to convey emotion and ambiguity in a way that words or photos don’t?

Bob Moran: That’s right. You could tell the same story using photographs of all of those frames and it wouldn’t work in the same way at all. If you’re illustrating, you have total control. You decide what to leave out, which is as important as what to put in, and you can make things more ambiguous. You can amplify bits of emotion or focus on certain things. And you can add in certain bits, like the superhero bit. There’s something subconscious going on for the viewer who knows these are drawings that someone sat down and did, and that makes them feel more comfortable. They’re not looking at something real, and yet it’s making them think about something very real. They feel they can immerse themselves, but in a comfortable way.

There were certain moments where I didn’t want to make it explicit in terms of what was going on. For example, I didn’t want any words with the frame where I’m in the hospital and going to see Sally, and she’s crying in bed. It’s enough that you see the picture.

BLOOM: I think that also makes it relatable to people who have been in similar situations. As a parent, I can see myself in that image. What did you learn about yourself through the creative process?

Bob Moran: It helped in lots of different ways. It threw everything into perspective. It enabled me to really get my head around how far we’d come since those early days of her birth, and how well she was doing relatively, when compared with what we expected at the beginning.

Personally, it gave me an understanding of how guilty I had been feeling about the whole thing. I think this is true of a lot of parents who go through this. Part of you always feels like it’s your fault, or you could have done something to stop it. I think telling the story again in my own way—it didn’t make the guilt go away—but it helped me to accept that maybe it’s a natural feeling, and I shouldn’t let it worry me.

BLOOM: I also think that when you have to tell the story over and over, it sinks in that you really couldn’t have done anything.

Bob Moran: When I started thinking about how am I going to tell this to someone who doesn’t know me or about me, how do I make this relatable and understandable, I ended up telling the story back to myself, as if for the first time. And you start to realize, you know, that there wasn’t really anything I could do and maybe I did cope as well as anyone else would. I’ve always dealt with things by drawing them, ever since I was a child.

BLOOM: There’s one brilliant line where you say 'I just didn’t think I was strong enough,' with an image of you lying prone on the floor at home, after leaving the hospital. My son is an adult now, and I still feel like I’m not strong enough. Somehow, having a child with disabilities seems to show up all of my inadequacies.

Bob Moran:
There are two aspects to that line. A lot of people will say to me ‘Yea, what parent ever does know what they’re doing?’ and that makes it relatable to everybody. At the same time, it means something very different to parents with a child with a disability or additional needs. It literally means you don’t feel like you have the inner strength to be able to do what the child needs, or what you want to be able to do for them—which, ultimately, is to take it all away.

BLOOM: Yes. I think that’s it. I always wish I could be better than I am. Or maybe I wish I didn’t have such wild, conflicting emotions about it.

Bob Moran: Before Poppy was born I felt like I had a rough idea of what I needed to be able to look after a baby. I felt I was equipped to do the pretty simple things—to give a home to live in and love them and be ready to take care of and teach them things. Then suddenly, it was like because I’m not a neonatologist, I’m not up to this. I can’t look after my daughter. I do pictures for a living. You’ve suddenly got these people who’ve spent 10 years in medical training saving her life, and it makes you feel so totally inadequate. It’s silly in a way, because you’re there, but you still feel like it should be you somehow.

BLOOM: You talk at the end of the piece about how Poppy, and the many health professionals in her life, are the real heroes. Did you feel happy with the medical care you received?

Bob Moran: That’s a bit complicated. Once she was transferred to the NICU, which is where the video begins, she received care that was out of this world. But everything that happened in the lead up to her being born and my wife being in labour was horrendous and really bad. Essentially, Poppy should never have had the brain injury. Sally was two weeks overdue and when we went to the hospital saying something is wrong, they wouldn’t let us see a doctor. So we’ve experienced both extremes of the health care system: the worst and the best.

BLOOM: What about the rehab services Poppy has received since?

Bob Moran:
Overall we found it a bit of a mixed bag. Quite a lot of the therapy that she’s received we’ve had to seek out and pay for ourselves. What you get on our health service here is very basic. Last year she had one physio session that was covered.


Bob Moran: We had to end up paying for private physio for her. The communication from the system to us has been very difficult, very bad at times. Certain things that we knew she needed we had to really keep fighting for and pressing for.

The system is disorganized and doesn’t make sense in a lot of ways. For example, she needs a Lycra suit that she wears to support her core muscles when standing and walking. So they measured her for the suit, then we had to wait six months for it to arrive. By the time it arrived, she’d grown out of it. It’s really ridiculous.

The one thing I thought at the time she was born was at least we live in a country where she’ll have everything provided for her, and the equipment and therapy she needs. But it hasn’t quite worked out like that. It’s really disappointing. I don’t think it’s to do with a lack of funds. I think the system is really disorganized.

BLOOM: Britain seems to be a difficult place to live as a person with a disability at the moment, with all of the cutbacks to home-care supports. There's also a perception that people with disabilities are 'working' the system.

Bob Moran: I think it is hard in this country. It’s a question of balance. There are things we’re willing to spend millions of pounds on that are totally not needed. Yet we’re not willing to make sure that disabled people have everything they need. Poppy has needed a wheelchair for over a year now and we just last week found out she can have one, we hope, in two to three weeks. Poppy can walk independently, but she’s really unstable, so she falls over all the time. She also tires quickly and can’t walk a great distance. Originally, when we were told it takes a year to get a wheelchair, we said how is that even possible? Why aren’t we doing something about this?

BLOOM: Has Father's Days been used to educate medical students?

Bob Moran: It’s been used to train doctors and nurses in Britain who are going to work on neonatal wards. Quite soon after the video came out, I had a lot of neonatal doctors get in touch with me to ask if it would be okay to show it to their staff. It’s been shown at conferences all over the world, and translated into four or five languages.

BLOOM: Wow. That’s amazing. Can you tell us a bit about Poppy now, at age four? What does she enjoy doing?

Bob Moran:
The latest thing is horse riding. Lots of people said it would be really good for her hips and her core strength, so we found a nice little stable near our home and we’ve been taking her every week. She loves being around the horses and touching them and the smell of them. It calms her down and makes her feel at ease. It’s really making a difference physically as she’s getting stronger and has better balance. She has a little riding hat—it’s the smallest size they make, and it’s still massive.

She loves drawing as well. She likes to get the paint and splash it around on the paper. She likes to come up to my studio and see what I’m working on. When I’m painting, I have sheets of paper where I mix the paint up next to my drawing board, so it’s a mess of colour. She always says she prefers that to the picture I’m working on.

BLOOM: That's funny. How does she get along with her little brother?

Bob Moran: They have a good relationship. They’re very similar in development, because Poppy was so delayed with speech and movement and Dillon has ended up being quite ahead because of the work we’re doing with Poppy. He’s listened to all of the speech therapy. Some people think they’re twins because they’re so similar.

BLOOM: How would you describe your new video called Father’s Days at Sea?

Bob Moran: It’s a sequel, a way of showing where we are now as a family and, in a way, how far we’ve come. It’s more lighthearted than the first video, and doesn’t have the same emotional punch. What was important for me was we were genuinely quite scared about going on holiday. I hoped that other families would watch it, and feel like maybe they can go on holidays, too. It won’t be perfect, but perhaps it will be okay.

BLOOM: Do you plan on doing more videos in the series?

Bob Moran:
It depends on if the newspaper wants more. I do have some other projects on the same theme that are more fictional.

BLOOM: Writing about parenting a child with a disability?

Bob Moran: Yes. Writing the first video made me reflect on where I wanted my career to go, and how I wanted to use my talents I guess. I found it so much more rewarding than just drawing politicians in a very cynical way. Doing this actually affects people in a real way, and I need to do more of this. What I’ve done so far has reached a lot of adults and maybe helped parents in similar situations. Maybe people who didn’t know anything about this world have gained a different perspective on it. What would be even better is if I could do the same kind of thing in a way that worked for children.

BLOOM: Like as a children’s book.

Bob Moran: A book that everyone could have in school that would help them talk about disability and not be afraid to ask questions. That would help children understand what a disabled child had gone through and what their strengths are.

BLOOM: What do you hope people take away from your videos?

Bob Moran: Overall, I hope people feel uplifted generally and reassured that however useless you feel as a parent, you’re doing okay. There’s no right or wrong way. As long as you love your children, you’re doing a good job. Don’t beat yourself up is one of the main messages I’d like to get across. Don‘t be hard on yourself. If you’re in this situation, everyone is doing their best, and no one can do everything.

Monday, June 26, 2017

Kenyan moms sew a better life for kids

Photos by Chelsea Dee

By Louise Kinross

In 2013, BLOOM covered a unique sewing project in Maai Mahiu, northwest of Nairobi, Kenya, that was changing the lives of mothers of children with disabilities. The project—then called Malaika Mums—is still flourishing and is now called Ubuntu Made. Mothers in the program make cotton bags, reusable coffee sleeves and beaded bracelets that are sold online and through Whole Foods, Zazzle and other businesses. In addition to providing the mothers with a good wage, the income supports an onsite school with rehab services for their children. Ubuntu is an African philosophy meaning “I am because we are,” reflecting the idea that we are all connected. We got an update from Wanjiru Kanuri, a program assistant at Ubuntu Kids.

BLOOM: Why is there a need for this program?

Wanjiru Kanuri: Many Kenyan communities still associate disability with curses and bad omens. This impedes the country’s development of services for children with disabilities, prevents parents from accepting their children’s disabilities, and makes social inclusion for these children almost impossible. We provide specialized education, therapy and rehab services while trying to shift the mentality surrounding disabilities to bring 10 per cent of our population out of the shadows.

BLOOM: What is the goal of Ubuntu Made?

Wanjiru Kanuri: Ubuntu Made is a social business committed to creating lasting changes in the communities we serve. Rather than making products and sourcing materials from other parts of the world, we focus our efforts on specific Kenyan communities, creating full-time jobs, including benefits like healthcare for our makers and their families. This is unheard of in Kenya, where only 10 per cent of the [population] has health coverage. This provides our makers with stability for their lives and their families.

We source many of the materials in our products locally, stimulating the Kenyan economy as a whole. We view our supply chain—from suppliers to makers to our customers—as links providing an ultimate exchange of good from start to finish. Ubuntu Made offsets the cost of our Ubuntu Special Needs Centre. Our revenue stream is a hybrid between earned and donated.

BLOOM: What products are produced?

Wanjiru Kanuri: They include leather and canvas travel tote bags, journals, beaded portfolio bags, printed kanga bandanas, beaded Maasai bracelets and reusable coffee sleeves.

BLOOM: Is Whole Foods still the major buyer?

Wanjiru Kanuri: Yes, Whole Foods is a major buyer, but we also have a presence on Zazzle and in boutiques across the country.

BLOOM: How many women work in the Ubuntu Made factory?

Wanjiru Kanuri: Twenty-five women work full-time.

BLOOM: How does this change their lives?

Wanjiru Kanuri:
They find empowerment through full-time employment and entrepreneurial skills training. They go on to buy land, start local businesses, create savings accounts and build homes. They are able to access medical coverage for their families and send their kids to school.

BLOOM: Tell us about the Ubuntu Special Needs Centre.

Wanjiru Kanuri:
We have 50 full-time children ages two to 15. Their diagnoses include intellectual, physical and/or developmental disabilities like cerebral palsy, Down syndrome, spina bifida, autism and epilepsy. We advocate for early intervention and have children less than a year old who are already on therapy schedules.

BLOOM: When we did a story in 2013, your school was the only one available for kids with disabilities there. Has that changed?

Wanjiru Kanuri: We are still the only well-established centre for children with disabilities in this area, but we work closely with our partners, including the [government], special education professionals, the Sarakasi Trust, the Kijabe Hospital and Special Olympics Kenya.

BLOOM: How is disability viewed there?

Wanjiru Kanuri: Previously the attitude was bad and parents hid their children. But we have seen that changing, and people are having more positive attitudes towards persons with disabilities.

BLOOM: How has your program changed perceptions?

Wanjiru Kanuri:
Our inclusion events connect community leaders, the community at large and children with special needs to break through the barriers of stigma and lack of understanding. Through our advocacy and creation of awareness we have seen great gradual change.

BLOOM: When we last wrote about your program, there were many children on a wait list to get in. Is that still the case?

Wanjiru Kanuri: Yes. We have even heard of cases of people relocating here to Maai Mahiu so that they are able to access our service. We are working towards building a [larger] educational and therapy facility for children with special needs to be able to accommodate all of the children.

BLOOM: What is a typical day like for students?

Wanjiru Kanuri:
We’re open Monday to Friday. Days include basic class activities, daily living training, hand skills activities, therapy sessions, meals and play time, including nature walks and play therapy at the playground. We even have monthly excursions and other outdoor activities.

BLOOM: What’s the greatest challenge of running the program?

Wanjiru Kanuri: Finances. Eighty-five per cent of our families are not always able to pay to get their children to the school. We have in-home visits to alleviate this issue. Our team has a very strong fundraising arm and, outside our enterprise programs of Ubuntu Made, Café Ubuntu and Ubuntu Water, they work to raise funds to expand programs and foster more inclusion.

Visit Ubuntu’s shop to see the products available. These photos were taken by Chelsea Dee and generously given to BLOOM.