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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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.

BLOOM: One?

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.

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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.

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Cartoonist draws about his life as Poppy's dad

By Louise Kinross

In 2015, British Telegraph cartoonist Bob Moran illustrated a heartfelt memoir about his daughter's birth with a brain injury. Called Father's Days, it contrasts how he imagined his new role as dad would go with the terror of seeing his newborn hooked up to machines and tubes. "I just didn't feel strong enough," he says, as an illustration of him lying prone on the floor after being sent home from the hospital appears.

The piece is packed with heartbreak and fear. That one line—"I just didn't feel strong enough"—I'm sure has been said, or felt, by every parent of a child born critically ill or with disabilities. 

Poppy, Bob's daughter, is now three years old and diagnosed with cerebral palsy and epilepsy. Earlier this week Bob released a new video about the family's first trip, a cruise around the Mediterranean: Father's Days At Sea. It's a lovely look at how Bob's fears about Poppy's safety on the ship give way to seeing the holiday through her "cheeky, confident, life-loving" eyes. It, too, is a must-see.

Bob has agreed to do an interview with BLOOM, so stay tuned to read about what he's learned through illustrating his parenting experiences. 

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Like gender, ability is more fluid than we think

By Louise Kinross

I was at a fabulous workshop at Holland Bloorview yesterday on how to create places that include and respect people who are lesbian, gay, bisexual, trans or queer (LGBTQ).

The most important thing is “to give people space to self-identify,” said Ashley McGhee, a specialist in education and training from The 519 community centre in Toronto. That’s done by asking a person what pronouns (he/she/they) they use to describe themselves. Then, Ashley said, affirm and honour the person’s response. 

We did some great exercises to better understand the difference between your sex (male or female, based on the anatomy you were born with); the gender you identify with internally; the gender you choose to express in the world; and your sexual orientation. Instead of being rigid, many of these things are fluid and change over a person’s lifetime.

We can talk to our kids about this and check in with them on how they identify.

The 519 offers a wide variety of programs for queer and trans families and parents of gender non-conforming kids.

“We need to challenge the dominant narratives about the way people are supposed to look, feel and move,” Ashley said.

I thought there were parallels between how we create an LGBTQ-friendly place and how we create a disability-friendly place.

We could ask youth how they describe themselves: do they take pride in the word disabled, or use person-first language, or use a reclaimed word, like “crip,” or have a unique way of describing their disability experience, or not use the word disability at all? Just like gender and sexual orientation, abilities are on a spectrum. It’s not a simple binary of “abled” or “disabled.”

But the most important thing I got from Ashley's presentation was that however a person describes themselves, we affirm and value them. We don’t value one gender identity or sexual orientation over another. We don’t value one ability or disability over another. 

“Labels are meant to help people better understand themselves, not to be used by others to categorize or stigmatize or 'other' the person,” says Daniel Scott, Ronald McDonald Playroom coordinator and member of the hospital's Equity, Diversity and Inclusion committee. “It's about how people self-identify, and it's about those of us who don't identify [that way] making it our responsibility to try to educate ourselves.”

Ashley suggested we might want to look, as an organization, at the personal information we collect, for example in research. “Is it really necessary to ask a person’s sex, which is asking them what anatomy they were born with?” What does it tell us if we record an F for female because of what we see, but the youth in front of us identifies as a boy?

The bottom line I got from Ashley’s talk was that identity can shift, but human value is a constant. A great message for our community.

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'We don't want to be held on leashes'

By Jadine Baldwin

As a 17-year-old girl who has cerebral palsy, every day I encounter teens with a variety of abilities and disabilities. The Limited versus the Limitless!

Society tells people like me that we’re limited because of our disabilities—mental or physical—and that because of what we’re lacking, we’ll never be able to live a full life. This can be disheartening for parents and guardians to talk about and process with their disabled children. For this reason, parents are afraid and unsure about how to support us when we become teens and even adults. They’re scared to let us “be free,” because all along they’ve been told to keep us close, or the world will eat us alive.

Parents don’t understand that just because we’re made differently from “normal” teens, doesn’t mean that we don’t want to experience life like normal teens. We want to go to the movies with our friends alone, we want to stay home alone, and we want to try the things we're constantly told we can’t do. We don’t want to be held on leashes. It doesn’t matter if we’re verbal or non-verbal, we can understand what it means to live a good, quality life.

We just need our parents and the ones we love to help us along the way.

I have a very close friend who’s my age and autistic. He’s super smart and funny and I feel so alive when he's in the picture. He and I have known each other since Grade 9. He understands me, and I understand him (like no one else does, as he says). Even though his parents have known him for 17 years, he tells me that it still feels as if they’re “newbies” sometimes. They know that he needs a simple and easy-to-understand structure in order to grasp this complicated world. Yet they still confuse him by putting too many minor details into a task or question, and that throws him off.

Sometimes, people don’t realize that simple is how everything begins. Simple love, simple feelings and then you gradually can start to think deeper. My friend’s parents are smart, my only advice to them is: Give your son a simple tree and he can make it grow into extraordinary things, all on his own. Just give him time and your support to let him know that you're ready to see the world through his eyes.

“I want to talk to you, Daddy...but the words won’t come.” That’s what it feels like to be a non-verbal child. Because they can’t voice their own opinion, you guys as parents have to speak for them. I’ve met so many parents with non-verbal children and they treat their kids so well—like actual human beings—not robots.

Although it’s great that you’re treating your child like a human being, I find it a little silly that in trying to make your child seem more than what society sees them as, you, in turn, make them feel less by focusing too much on society and not on them.

It’s hard to speak for your child if you don’t know how to stop talking and listen to them, instead. Parents, your children need to know that you are hearing them as much as you are fighting for them. Just listen!

For parents of children who don’t have a reliable communication aid, talk to other parents, and see what worked for their child, to give you motivation and inspiration. Don’t give up.

Being a child with cerebral palsy is great—if you don’t have parents that smother you! My Mom does exactly that! I bet every teen who has CP has experienced this in one way or another. Our parents think that we're little and can’t handle the “big” because that’s what many doctors have told them. So, they don’t leave you home alone for more than five minutes (especially if you’re in a wheelchair).

Some parents won’t let you go to sleep-away camps with other disabled kids until you’re 17 (my Mom)! They always think that people are out to get you. We love them more than life itself, but it gets so crazy sometimes. I always think, Mom, my friends are not murderers and if they were, I’d be dead already.

In my opinion, our parents forget how tough we are because sometimes we don’t look it. If your child has CP, please do not smother. Please don’t tell us that we can’t handle life, because we were built for it. Please let us live (a little more).

Dear parents of disabled teens: We appreciate you and love you! We aren’t telling you that you can’t worry about us. You’re supposed to. We’re simply saying that you need to support us with what our futures hold, not hold us back. We need to soar, but that doesn’t mean that we won’t come back home. We may need help along the way, but we need to explore. That’s what life is meant for, isn’t it?

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Designs make wheelchairs a work of art

By Louise Kinross

Izzy Wheels is a business that sells designer spoke guards created by Irish sisters Ailbhe and Izzy Keane. Izzy uses a wheelchair. Growing up, she loved her wheels, but it bothered her that they didn’t reflect her personality and style. When Ailbhe was at design school, she was tasked with creating something to enhance the lives of people of people with disabilities. She and Izzy brainstormed, and came up with art-decorated spoke guards. After Ailbhe graduated, the women created a business. Ailbhe works at Izzy Wheels full time, while Izzy balances her university studies with part-time work there. BLOOM interviewed them both by e-mail.

BLOOM: What bothered you about wheelchair design in the past?

Izzy Keane: The thing that bothered me before Izzy Wheels was that it was really difficult for me to visually portray to the world the positive relationship I have with my wheelchair. Until I put on my first pair of customizable spoke guards, my wheelchair looked like a lump of metal made in a hospital. To me it has always been so much more than that. I’ve always wanted the opportunity to make my chair look nice, as a sign of respect to it. Now at first glance people know that I love my wheelchair.

BLOOM: Do spoke guards have a function?

Izzy Keane: Spoke guards protect the wheels of a wheelchair from being damaged and now, thanks to Izzy Wheels, they act as a means to enhance a wheelchair user’s outfit.

BLOOM: How did Ailbhe come up with the idea of creating stylish spoke guards in her art program?

Ailbhe Keane: My sister Isabel has been in a wheelchair all her life and growing up it really frustrated her that she didn't have a way of customizing it. When I was in my final year in the National College of Art and Design, I was offered the opportunity to undertake a self-directed project to 'Enhance the lives of people living with a long term, lifestyle related health condition.’ As soon as I came across it, I knew that it was the perfect opportunity to incorporate my knowledge of my sister’s disability into my work and Izzy Wheels was born! After I graduated from college I decided to turn my project into a business.

BLOOM: What are the spoke guards made of and how is the design put on? Are they for kid and adult chairs?

Ailbhe Keane: The spoke guards are made from plastic with very high quality finishing so that they are very easy to wipe down and clean. They have velcro straps at the back to fasten the spoke guards to the wheels of the wheelchair. Yes, the product comes in three different sizes to cater to children, teenagers and adults.

BLOOM: How do you find artists to design them?

Ailbhe Keane: As a graphic designer myself I have a lot of friends and valuable contacts in the art world. I spend time looking through artists’ previous work to see if I feel that it fits in with the style and ethos of Izzy Wheels. We also get messages from designers all over the world who have seen our work and want to be part of our upcoming collections.

BLOOM: What is the range of cost? Do you ship internationally?

Ailbhe Keane: Yes we ship internationally. The spoke guards come as a pair, one for each wheel and cost between €119 (CDN$180) and €139 (CDN$211).

BLOOM: What is your best-selling design? Does Izzy have a personal favourite?

Izzy Keane: All of our designs are extremely popular. Currently our best seller is the rainbow mandala. Personally, I don’t have a favourite design, as each of the sets coordinates with a different outfit from my extremely colourful wardrobe!

BLOOM: How do you feel differently when you’re out wearing these spoke guards?

Izzy Keane: The spoke guards make me feel extremely confident because when I meet new people my cool wheels are a great conversation starter.

BLOOM: Does the public have a different reaction to your wheelchair when you have the designs on?

Izzy Keane: Definitely. Having my Izzy Wheels on is like telling people that they don’t have to be afraid to acknowledge my disability. It diminishes any potential awkwardness that another person who is inquisitive about my disability may feel. People now are more at ease when asking questions about my disability.

BLOOM: Is Izzy Wheels a business? I noticed it said you donate to charity.

Ailbhe Keane: Izzy Wheels is a business as well as a social enterprise. We give donations from all of our sales to disability charities around Ireland. The proceeds from our ‘Roll Models Collection' are donated to the Irish Wheelchair Association.

BLOOM: What are your plans for the future? Do you both work at Izzy Wheels full-time?

Ailbhe Keane: We are creating a global fashion brand for wheelchair users. Our plan is to expand our business worldwide. We already have a lot of exciting surprises being launched in the near future. I work in the business full time and Izzy works in the business part time. She is also in university studying sociology and politics, French and law.

BLOOM: Why are so many disability-related products ugly?

Izzy Keane: I think the reason why so many disability products are ugly is because when they’re being designed all of the energy is put into their functionality and their aesthetic is forgotten.

Izzy and Ailbhe won first place in the 2017 Accenture Leaders of Tomorrow awards.

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Mindfulness cuts parental stress, depression

By Louise Kinross

What would best support parents of adult children with developmental disabilities who’ve left school and fall into a black-hole of services to fill their day?

A six-week mindfulness group that taught parents to pay attention to their feelings and thoughts in an accepting, non-judgmental way, or a six-week group that gave parents information and support on how to get services for adults, many of which are wait-listed?

A fascinating study in the Journal of Autism and Developmental Disorders compared the two, and found parents in the mindfulness group reported significant drops in depression and stress, while parents in the information and support group did not.

“We forget that stress for these parents accumulates over time, and the demands become bigger as the child becomes an adult and service gaps are more extreme,” says lead investigator Dr. Yona Lunsky, a clinician scientist at CAMH who partnered with Developmental Services Ontario (DSO) and Community Living Toronto.

Yona worked with DSO to recruit parents who had applied for services into one of two randomized groups. The parents ranged from age 37 to 81. Their adult children were aged 16 to 40, with autism or other developmental disabilities. One-quarter of the adult children didn’t have anything to do weekdays during the study.

“The study looked at parents who came to DSO to access services, and who were focusing on their kids as opposed to themselves,” Yona says. “We wanted to see if we could teach a skill that doesn’t change the child’s situation, but changes how parents view and deal with it.”

Parents in both groups met weekly for two hours for six weeks. In the mindfulness group, they learned practices like the body scan—where they feel each body part, from toes to head—a three-minute breathing exercise, and a loving-kindness meditation. They also learned how to be more mindful with their child—for example, observing something about their child that brings them awe.

The goal was to teach practices that parents could use on the fly while juggling their many responsibilities. ”The demands in their day mean these parents are constantly pulled away from being aware of themselves,” Yona says. “We encourage them to use their senses to come back to themselves and pay attention to how they feel.”

It could be taking a moment before they get out of their car, or while sitting in a waiting room. “It’s just as important to notice ‘I’m upset, I’m tired, I’m exhausted’ as it is to notice ‘I feel good,” Yona says.

Self-compassion is a big part of the practice. Parents tend to have empathy for their children or the experience of other parents, “but they don’t take the time to have that same compassion for themselves,” Yona says.

“We’re teaching them how to be in the present moment, and how to be aware of a thought or a feeling without judging it. Perhaps today you notice some tightness in your chest or negative thoughts or feelings about your child: ‘I’m really frustrated.’ But if you’re not aware of that emotion, you can’t change your interactions or choices to help yourself. If you’re aware that you’re feeling frustrated, perhaps you pause, take a break, drink some water or do something else to take care of yourself. Maybe you ask someone to step in to help. It’s the idea of the parent putting on an oxygen mask in the airplane first, before putting it on their child.”

The parents who met in the information and support group listened to speakers on topics like adult day programs, residential care and mental-health services, person-directed planning and parent self-care.

Child care was provided for both groups and parents had a break for tea and a chat in the middle of each session.

Parents in both groups said the interventions were beneficial and they liked meeting parents in similar situations. Two years later, some parents from both groups continue to meet.

However, on a 14-item measure, parents in the mindfulness group reported significant reductions in depression and stress which weren’t seen in the information group parents. “Parents who did the mindfulness had an improvement from before to after, and they maintained that improvement 20 weeks later,” Yona says.

“We think it’s because they’re learning a skill that over time can help reduce stress and improve mood, and it’s not driven by success in your environment. If we feel happy because our child achieved ‘x,’ then our happiness depends on the child. But the issues these parents face—whether accessing a service or dealing with a behavioural or mental health problem in their child—don’t necessarily have immediate solutions.”

In the paper, the authors note that mindfulness “moves away from a focus on problem-solving to instead offer skills to cope with situations that are difficult and may not improve very quickly.”

Yona says next steps in the research include looking at virtual and other ways to deliver mindfulness training, what the best intensity of the intervention is, and how the makeup of the group influences outcomes.

You can contact Yona at Yona.Lunsky@camh.ca.

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