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Every kid deserves a pair of jeans

By Megan Jones

In the summer of 2013, Mindy Scheier was faced with a problem. Her son Oliver, then nine, wanted to wear jeans to school.

Oliver, who has a rare form of muscular dystrophy, has trouble using buttons and zippers. He also wears leg braces, which don’t fit easily under restrictive fabrics like denim.

Mindy, who lives in Livingston, N.J., had a choice: she either had to tell her son he couldn’t wear the clothing he wanted, or send him to school without leg braces and risk that he might not be able to use the bathroom by himself.

“It was terrible,” she says. “I felt like I just didn’t know what the right thing to do was. Oliver views himself as a typical [child]. So he was completely confused as to why it was even a question whether he could wear jeans or not.”

In the end, Mindy let her son wear what he wanted. But the worry she felt as she sent him to school got her thinking about how limiting mainstream clothing was for children with disabilities. A fashion designer by trade, Mindy had adapted some of Oliver’s clothing in the past so that he could wear it comfortably. But the mom of three wondered how parents who didn’t have the sewing skills to modify off-the-shelf clothing managed to dress their kids with disabilities.

Then Mindy had a brainwave. Instead of thinking it was her responsibility as a parent to modify clothes that already existed, why didn’t she insist that companies create children’s wear that was adaptable in the first place?

With that idea in mind, Mindy, who in the past has worked for big names like Saks Fifth Avenue and Macy’s, decided to combine the two things she knew intimately about: clothing and disability.

Within a few months, she launched Runway of Dreams, a not-for-profit that aims to convince larger mainstream labels to produce adapted versions of current, fashionable clothes for children with disabilities. The company’s philosophy is simple: Kids deserve to wear whatever they want to wear. And it’s time for the fashion industry to step up and help them do it.

“We have plus-sized department and petite departments and maternity departments,” Mindy says. “And we have nothing for the differently abled community? It is so mind-boggling that this has not been done yet.”

Runway of Dreams isn’t the first company aimed at designing clothes specifically for kids with special needs. Other adapted clothing options exist, but they’re limited, often expensive and seldom trendy. Mindy hopes her project will ultimately give more people easy access to affordable clothes kids will actually want to wear.

Since she came up with the idea a year-and-a-half ago, Mindy has reached out to others to get a better sense of the range of clothing needs kids with disabilities have. She started with a large Facebook survey, which received answers from parents and children all over the world.

The survey revealed that people with disabilities struggled with three main things when it came to dressing. The first was fasteners: buttons, snaps and zippers seemed to be a problem for nearly everyone across the board. The second was the way clothing needed to be put on—kids with cerebral palsy or muscular dystrophy, for example, have low muscle tone, and can’t easily lift a sweater above their heads. The final issue was the ability to adjust the garment to fit—especially important for those with differently shaped bodies, and those with equipment like leg or back braces.

Using this information, Mindy designed a few prototypes and tested them with a group of high-school students and their parents at a school (see photo above). She partnered with Maura Horton, a Raleigh, N.C.-area woman whose company MagnaReady produces washable magnets that can be used in clothing.

They modified pieces with magnets—like a dress-shirt that opens along the back, allowing the wearer to slip their arms inside, and fastens easily.|

“It was one thing to talk to people but another to have them judge, feel, see the modifications that were made,” Mindy says.

Participants’ reactions confirmed for Mindy that Runway of Dreams was an important project. One boy with muscular dystrophy travelled an hour-and-a-half just to participate in the group. He told Mindy that he’d recently been accepted to Harvard, and that what he wanted most for his first day of university was to wear jeans like a typical freshman.

“Being able to wear what you want brings you personal confidence,” Mindy says.

“Differently abled kids are constantly being told, ‘You can’t play that,’ or ‘You can’t wear that.’ I think it will resonate that someone is saying, ‘You know what? You can actually. We’re going to make it happen.’”

So far, Runway of Dreams is in talks with one large clothing company, which Mindy hopes will lead to an official partnership. She’s also reaching out to other designers and manufacturers. Since adapted clothing caters to such an underserved market, she believes it’s in companies’ best interests to get involved.

“Forget about the feel good aspect of it,” she says. “There is a huge population of people out there that are ready and waiting for something like this to happen. They’ll spend their money on it.”

One day creating accessible clothing will be mandated, she predicts, and all companies will have to make a percentage of their clothing adaptable.

Until then, she’s pushing them to get involved. “As a mother, whether your kid has a disability or not, you know how hard it is not to have your child feel good about themselves,” she says. “I’m asking everybody to spread the word because we can make this happen together.”

At the very least, Mindy’s project has left her son (below) hopeful.

“Oliver and I were just interviewed on CNN,” Mindy says. “He ended the interview by saying, ‘I told my mum how lucky she is that I was born with muscular dystrophy. Because we wouldn’t be where we are right now if I didn’t have it!’”

To check out a great video on Mindy's work, or become more involved in the movement, visit
Runway of Dreams.  

 

Finding your voice

Anna Rendell presented a workshop called Me to We on the power of parents finding their voice on social media at the Ontario Association of Children’s Rehabilitative Services conference last month. She presented with parents Anchel Krishna and Darren Connolly. Below she shares how she benefited from using social media when her twins Drew and Dean, 6, were diagnosed with cerebral palsy. Anna and family are pictured above at Great Wolf Lodge.

By Anna Rendell

To get anywhere, we need to know who we are. We need a level of honesty and openness to discuss our emotions. We also need to be aware of our comfort levels, of what we want to share and what we want to keep private. When raising children with disabilities, we need to figure out our story. Social media can be a great place to do this.

When my boys were young, I was obsessed with seeking out families like mine. I hoped that connecting online with other parents would enable me to become comfortable with my “new norm,” with the normal that nobody wants and no one tells you about.

I wanted to know how people coped with their child’s diagnosis of cerebral palsy; how many parents had twins with CP, like me; how they supported their typical children; and what the future looked like for my kids.

My boys don’t have the same issues as some other children with CP, so I also wanted to connect with parents who could relate to having children who are non-verbal and have developmental disability. I think I wanted to protect what I cherished in my boys, what was normal to me, but wasn’t normal to everyone around me.

After a while I found myself overwhelmed with the Facebook groups and Twitter feeds I followed. A lot of the content was negative, and I have always lived my life positively. So I learned how to delete the feeds that were less than positive, and choose only groups that were well organized, respectful, and like-minded.

I had so much to say that I started to write a blog. I needed a place to vent, to think, to process what I was going through. I wanted to voice moments with my boys, both positive and negative. I didn’t care whether I had a large readership.

Over time, I began to see that this little blog could make small changes in how my friends and acquaintances thought. I saw that my words had power and my perspective could influence the way others looked at things. Telling my story was no longer just about me. My story could generate broader understanding in the community.

Here’s an example.

When my boys started junior kindergarten they took a cab because they weren’t walking.

I made it our annual goal to have them ready to climb on and off the bus for senior kindergarten, so that they could ride with their older sister. We incorporated physio, occupational and speech therapy into this goal and they achieved it. But it takes them longer than usual to get on the bus.

We live on a main street, which means that dozens and dozens of cars wait behind the bus while my boys get on every morning.

I posted on my blog about how every day I wave to the cars lined up, hoping that someone will interpret the gesture as a sign of gratitude for their patience. I said I wish I had a sign that I could hold that said: “If you only knew how hard we have worked for this, you would smile.”

My goal was to lighten people’s moods if they were feeling angry or frustrated about the delay.

After running this piece, I received kind messages from a handful of friends and acquaintances. They let me know they were talking about my post and now they understood why it took my family longer to get on the bus.

Recently, a friend wrote to say she was in a rush one day and started to get frustrated sitting behind the bus. Then she saw me wave and realized who we were. She remembered my piece. She cried all the way to work, knowing how hard my family worked to achieve this goal and that each step up was a great accomplishment for us.

In the early days, sharing our stories on social media helps us as parents understand who we are, and what kind of support we need. But soon, we move from that place of “me” to one of “we.” We begin to foster understanding in our friends and families and in the larger community.

Follow Anna @annakrendell and at Sometimes you have to dance in the rain. I love her recent post titled Spinning bawl of grief.

'There is something magical about this place'

By Louise Kinross

Stephen Dustan is a 23-year-old rehab services student doing a placement at Holland Bloorview. He works with life-skills coach Sarah Keenan, meeting youth in the community to help them set independence goals. Stephen knows our hospital intimately. As a child with cerebral palsy he attended our integrated kindergarten program. Since then he’s been an inpatient and outpatient; a Spiral Garden camper and volunteer; a high-school co-op student in our integrated kindergarten (working with his old teacher Paul Alcamo); and he now works part-time as a recreation assistant with our inpatients. One of our family leaders suggested we interview him.

BLOOM: Why did your parents choose our kindergarten for you?

Stephen Dustan: I think what attracted them most was the fact that I would have therapy and be in a place that was equipped to handle my needs. They loved the idea of it being integrated with community kids because that gave you such important skills of being able to articulate your disability to able-bodied kids, which is something you’re going to do lifelong as a person with a disability.

BLOOM: What do you remember about our school?

Stephen Dustan: I remember having my disability explained in a way that I understood and in a way that I could explain it to other kids. My 'go-to' is that my brain got cut-off from oxygen at birth, damaging the way my muscles communicate to my brain. So my muscles are tighter and don’t grow properly like normal kids’ muscles do.

BLOOM: Did that explanation satisfy most kids?

Stephen Dustan: They often gave me a blank stare. It kind of went over their head but it kind of sunk in. I found my willingness to explain it beneficial. Kids are just curious, they’re not mean by nature, and if you provide them with an answer, they usually were pretty receptive and understanding.

BLOOM: What was it like to move to your local school for Grade 2?

Stephen Dustan: The moments when I would feel different from the class were when everyone was getting ready for recess, especially in winter, and it would take me longer, so I’d have less time outside to play. Getting an educational assistant in place for me was difficult and took some time. But I was good at self-advocacy and stating my needs. So I asked whether I could get ready five minutes earlier than the class. My disability was never an issue for me socially. I have an older sister and I had the support of her and her friends so the kids in my class gave me respect. I always had friends to confide in and rally around me. It wasn’t until Grade 8 that I experienced some bullying.

BLOOM: What happened in Grade 8?

Stephen Dustan: I did my last year of elementary school in a new school that opened in my neighbourhood, so I was starting again without friends. I fell into a group of friends that were kind of mean to each other and very political. I did experience some bullying and I definitely can relate to the isolation that that causes: the feeling of not wanting to go to school; hearing whispering and thinking it’s always about you. I told my friends and parents but I never got the authorities involved. I waited it out until high school and it got a whole ton better then. I remember on the first day of high school I was really nervous and I came through the doors on my scooter and there were three of my old friends from elementary school and instantly I knew that it was going to be fun.

BLOOM: What is your university program like?

Stephen Dustan: I found this York/Seneca rehab program where you get your BA in psychology, which I now have, and then a certificate in rehab services. It’s a general program that covers all aspects of rehab. What I like most is that I had the opportunity for field placement.

BLOOM: What did you do as a placement?

Stephen Dustan: Two years ago I worked with The Centre for Dreams, which is a day program for adults with developmental disabilities in Markham. I worked with clients on social goals, life skills, self-care and vocational skills. I had never worked with clients with developmental disability and it was a really great experience. I got a new appreciation for how honest people with developmental disability can be, how kind they can be, how open hearted they can be. It was a privilege to work with the clients and the staff.

BLOOM: What are you doing in your placement here?

Stephen Dustan: I’m in therapeutic recreation and life skills working in the community with Sarah Keenan. I’m learning about the life skills process, the different ranges of goals that clients set and how to achieve these goals. It’s very solution-focused.

BLOOM: Have you found anything about the work surprising?

Stephen Dustan: I knew I would like it, but the amount I like it surprised me. Life-skills coaching is definitely something I could see myself doing and having this experience with Sarah helps me in my job as a casual staff on the inpatient unit being a recreation assistant. I can apply what I’m learning to both situations.

BLOOM: What is your favourite part of the work placement?

Stephen Dustan: I love the element of counselling and coaching and being a part of someone’s development. My future goal is to pursue a master’s in social work and get into counselling.

BLOOM: Does it seem unusual to you that you spent so much time here growing up and now work here?

Stephen Dustan: Holland Bloorview was such an integrated part of my life. I never had any negative feelings around this place. For example, I didn’t connect it to the more traumatic elements of my recovery after my surgeries when I was an inpatient here. It was physically painful to do rehab, but it wasn’t emotionally painful or painful in a way that would make me not want to come back.

BLOOM: How would you describe Holland Bloorview?

Stephen Dustan: It’s incredibly unique and alive. For me it’s been a place of recovery and opportunity and it still is. There is something magical about this place, especially the Spiral Garden program. I went there when I was little and I later volunteered there. They’re phenomenal at putting this element of imagination, of magic, into a place that traditionally shouldn’t have any. From my time working at Spiral Garden and on the inpatient unit in general I’ve come to see the amount of work and organization that go into creating that recreation hour with the clients gardening. How many people pour their heart into what they’re doing, the amount of organization and heart and energy it takes.

BLOOM: Has your view on disability changed over the years?

Stephen Dustan: When I was a kid I always had this idea that you’re not disabled, you can do anything a normal kid can do it will just be a bit more challenging or you’ll do it differently. That helped me tremendously as a kid, but now as an adult I can recognize that it’s not a matter of me not being disabled. Disability can be an identity, a social identity. So much of my strength has come from 'being disabled' that I no longer see it as a weakness or something you have to distance yourself from or deny. It’s something you can accept and in some ways celebrate.

BLOOM: What are some strengths that have come from your disability?

Stephen Dustan: I think there’s a depth, an internal space that I have to hold things, to connect with people, to understand people’s struggles and emotions. Because I’ve been placed in intense situations that most people don’t experience, I’ve got insight into where strength and hope come from when it’s really dark. I know that that light is inside everyone and you have to find it and if you can relate to it in an authentic and real way, you can make that light brighter in yourself and in someone else.

BLOOM: So disability isn't something you need to 'overcome?'

Stephen Dustan: No. I’ve done a few disability studies courses that opened my eyes to the idea that disability is really a matter of social barrier and not a matter of something being biologically wrong with a person. It’s not about overcoming tragedy. It’s more about transforming tragedy into triumph, but not in the sense that you move past it or get over it. You accept the disability with such wholeheartedness that it no longer is something that impedes you on your path.

BLOOM: What was it like to come back as a placement student in the integrated kindergarten you had gone to as a young child?

Stephen Dustan: So many memories that were foggy came flooding back. Paul is exactly the same in every way I remember him. He still gets the most stoked about dinosaurs of anyone I know. I remember as a student I knew every dinosaur’s name and now I can see why I was so passionate about that topic—because Paul was.

BLOOM: What impact do you think you had on the kindergarten students when you came back?

Stephen Dustan: I hope they can see themselves in me and we have that connection. It’s the idea of 'Hey, I made it, I’m doing well and you can too.' I hope they take from my example that they too can be a part of this world in a real and authentic and powerful way. I try to remind myself that I’m a role model and to hold myself accountable to that.


Here's a photo of Stephen as a co-op student in the integrated kindergarten. By Paul Alcamo.

'This is a love story'


By Louise Kinross

The Fall: A Father’s Memoir in 424 Steps is a book that will intrigue, delight and surprise you. Written by Brazilian author Diogo Mainardi, it’s made up of 424 short sections of text and images. Each marks a step his son Tito takes, with great difficulty, to reach a hospital in Venice where a medical error during his birth caused his cerebral palsy. As they walk, Diogo links Tito’s disability to great architecture, literature, historical events, movies and other cultural phenomena of the Western world.

BLOOM: The book begins with you blaming historical figures for the medical error that caused Tito’s cerebral palsy. I think many parents get stuck on ‘why’ their child’s disability happened. Why did you decide to link Tito’s disability to architecture, historical events and movies?

Diogo Mainardi: In my case it was ironical. Obviously there is no direct link. In our case I didn’t need to find a reason for Tito’s disability because it was very clear from the beginning that it was a medical error. So in our lives there were the facts—and there was a judicial process for dealing with those—and there were the feelings. And the book tries to deal with them both.

To my incredible surprise, when my son was born my life was completely overtaken by feelings of love. Before he was born, I was anti-sentimental. I didn’t believe literature was about feelings. I believed it was about ideas. In the past, I was unable to write about feelings. After five years of joy and love with Tito, I started to think about this love and everything connected very easily in my mind. I felt it was the right thing, the honest thing, to try to express this passion through the only means I had, which was writing.

I tied the ‘why’ of Tito’s disability to beautiful things, to things that I love because, to my surprise, from Tito’s birth onwards, it was such fun to have him around and so enriching and exciting to follow every step he took. It was a breathtaking and improbable and unexpected adventure. I couldn’t associate him with anything less than the books I loved, the pictures I loved, the buildings I loved.

BLOOM: In the book you talk about how the person you were died when Tito was born. How did his birth change you?

Diogo Mainardi: It humbled me certainly. The first thing that happened to me was that I understood that I wasn’t the main character in my own life. I was a secondary character. I was not Costello, I was Abbott. I was the straight man, there to make things happen. That put everything in our life into a new perspective. I calmed down and enjoyed being the follower of someone as I could not have imagined before.

BLOOM: In the book your acceptance of Tito’s cerebral palsy is absolute and you say it was never a cause for sorrow.

Diogo Mainardi: It’s a strange process. I couldn’t and can’t see Tito in any other way. He is Tito with CP and I can’t imagine him in a different way so it’s an absolute acceptance because he’s my son and I love him just like that. It’s very hard for me to imagine myself loving, and at the same time, wondering if that object of love should be different from what it is. That’s the acceptance. But I can only talk to our tiny experience and I don’t try to imagine other parents’ experiences. The book is not about a father with a CP son, it’s about Diego’s experience with Tito.

BLOOM: You talk about wanting to celebrate a son with a disability. Do you think you would have adapted in the same way if Tito’s disability was more severe?

Diogo Mainardi: Yes, I would have adapted in the same way. If it involved physical suffering it may have been different. Tito doesn’t have any physical suffering. At the beginning, when we learned Tito had CP, during the night my wife and I would worry and talk about being worried. But as soon as Tito woke up, the worry would immediately disappear because the idea is much more terrifying than the fact—than the child itself.

BLOOM: Tito is associated with falling in the book, due to his tight muscles, and there are references to the biblical ‘fall.' You talk about how your wife Anna fell in front of you and Tito when he was a baby and he laughed and that helped you to see that we’re united in our imperfection.

Diogo Mainardi: That was the turning point. I had already accumulated literary experiences that helped me to have lower expectations about man’s accomplishments. I was very much into comical, humorous literature and that helped prepare me to not idealize my own son.

BLOOM: The book conveys the idea that imperfection is part of the beauty of being human.

Diogo Mainardi: Tolerance is the end result of diminishing our arrogance, isn’t it? I don’t think you have to have a disabled child to learn to live with that idea. The most extreme case of human arrogance was Action T4, the Nazi’s project to kill disabled children. The opposite is the acceptance of humans being flawed.

BLOOM: The part of the book where you link the Holocaust back to the German who first asked Hitler to kill his son because he couldn’t accept his disability was very compelling. Why is it so hard for us to accept disability in our culture?

Diogo Mainardi: It has always been this way. Children with disabilities were killed in ancient Rome and they’re still killed in Indian tribes in the Amazon. It’s something that’s seen as unacceptable. I’ve always seen my book as part of a larger world. It’s a love story between me and my son and the difference between other love stories is that the handicapped child was segregated or put in a ghetto. I don’t accept segregation. Tito is part of literature and part of a love story because I’ve never seen him as being excluded. Tito brought me a sense of reality. The things I knew by reading, by seeing, by thinking became so incredibly real.

For example, I was horrified by the Holocaust, obviously. I knew intellectually what it meant. But after I had Tito I had my own Auschwitz survivor at home.

BLOOM: Is Tito accepted in your town?

Diogo Mainardi: In our small village in the book Tito is very much part of the landscape. He is accepted and he’s also protected. In Venice Tito manages to go from our home to school walking by himself with his walker and he gets out of the vaporetto [water taxi] and gets on the school lift and goes by himself. Obviously, he has no friends.

BLOOM: What? He has no friends?

Diogo Mainardi: Everybody likes him and is very tender to him, but he’s 13 now and the 13-year-old boys and girls are not ready to listen to someone who speaks in a slurry way or has difficulty walking from one place to the other and is much slower. This is something that we can’t impose.

BLOOM: But doesn’t the school have a responsibility to educate students?

Diogo Mainardi: Trying to instill tolerance in a forceful way doesn’t work. I tell the teachers to try to see disability as a resource and opportunity. Last year Tito’s class learned about World War II and the part of my book about Nazism and the T4 project was read to all the children. They knew Tito had a father who wrote about how he loved his disabled boy and they learned about something that happened in their grandparents’ lifetime—the greatest monstrosity of all time. I think that’s a more effective way of integrating children with disabilities.

BLOOM: Doesn’t his lack of close friends make you sad?

Diogo Mainardi: Yes, it does. But at the same time everything we try to accomplish with him is to make him strong enough to accept the fact that being different means his relationships with people will be different, and he should be proud of his difference and conscious of it. We never say ‘You are just like the other boys.’ We always say ‘You are a fantastically unique boy and while the uniqueness has many disadvantages that you have to learn to deal with, it also defines many wonderful things and hopefully you will find them as wonderful as we do.’

We try to teach Tito and our other son values and principles and this is part of what a parent can do, which isn’t much, but we can show through example how we feel about him being what he is and that’s what we try to do. We cannot try to overreach. It’s so frustrating to try to solve every little animosity and instill in other people respect of a disabled child. It’s too big a war. We prefer to win small battles and everyday battles and mainly to reinforce him so he can try to do it himself.

BLOOM: You make reference to overcoming the need to overcome Tito’s disability in your book.

Diogo Mainardi: That’s something which we abdicated very soon, because we understood some obstacles can’t be surpassed. You can’t surpass every single obstacle and you have to accept and conform yourself to the differences or difficulties that exist. As you know, there is also a book genre of people with disabilities who climb the Himalayas.

BLOOM: I hate those books.

Diogo Mainardi: I have to accept that we won’t and we can’t and we’re not supposed to. I say leave Mount Everest over there. Tito has great difficulty walking so let’s get him a small ramp and a bridge and that’s all I asked. I think there’s a tendency to patronize and look for stories of victory over failure. We accept our failure and we accept that our son might fail and we will fail. That helps to put things in perspective because my son’s flaws are my own flaws. They are no different than mine. Having Tito made everything real. Things were not ideas anymore, they were a part of my life. There have been thousands of years of ‘falls.’

BLOOM: What do you hope readers take from the book?

Diogo Mainardi: I hope they have fun. I hope they can see how much fun our experience with Tito was because it was, for us, really a breathtaking adventure and the love was such a great, unexpected feeling at that moment in my life.

BLOOM: I loved the book because it linked disability to all of the great stories in history.

Diogo Mainardi: This is a love story and a family story. Years ago children with disabilities were not part of families’ stories because they were segregated. They were locked in a dark room. Not now. Shakespeare wrote about families and conflicts in families. This is a family. I’m not Shakespeare. People can connect with families and I expect them to accept my son as part of the family.

No one outside our world will read something that’s simply about cerebral palsy. We need to enlarge the subject. When we talk about larger phenomena and larger ideas and when we mix disability with tolerance, with having a less limited view of mankind, it enriches our own experiences. That’s what I tried to do in the book. It’s our story, but it’s a common story that has a past in the great stories of the world.

BLOOM: Do you think the book can reach people who don’t have experience with disability?

Diogo Mainardi: Yes. I try to break the barrier and go to the other side because it’s the side in which we’ve lived the whole of our lives before having a handicapped child. We need to talk to both sides. As Tito’s father I could take him and show him to the rest of the world and I could show the rest of the world to him.

BLOOM: Has Tito read the book?

Diogo Mainardi: Yes. I asked his permission to write the book beforehand and after a certain reluctance he accepted it and participated in it. He helped me find the photos and took some of the photos we used. He was very proud of the book when it came out in Brazil and was a great success. He went to the Edinburgh Book Festival recently and signed the book.


The balancing act: Children's rehab is about truth and hope

Dr. Anne Kawamura is a developmental pediatrician in Holland Bloorview’s child development program, working with children with cerebral palsy, autism and other developmental delays. She was hired 10 years ago after completing her fellowship in developmental pediatrics here. In addition to her clinical work, Anne directs the University of Toronto program for pediatricians who train for two years to become specialists in working with children with disabilities. She has three children of her own.

BLOOM: What led you to working in children’s rehab?
Anne Kawamura: A lot of it stems from the fact that when I was in medical school I had a chance to work with children with autism. As part of a research project with Dr. Wendy Roberts I went into the community three days a week as a volunteer to do intensive behavioural intervention with two young boys. It was really hard and I didn’t know what I was doing, though I had some basic training.

The greatest part was just having the connection with both of these kids and to see that even though things were really challenging for them and their families, that you can build a relationship with these children. That was very meaningful for me. People often misunderstand that. You can really get to know a child with autism and they can get to know you in their own way.

I also felt firsthand some of the judgment that families experience. One of the boys banged his head and once he was so upset he gave himself a black eye. I took him to the park and people looked at me, with a child with an injury, as if he’d been abused. I got a sense of how it felt to be in the parent’s shoes.

BLOOM: What is the most challenging part of your clinical work?
Anne Kawamura: I think the hardest days are when families ask me really hard questions, like ‘will my child walk or talk?’ and I know the answer is that the child may never walk or talk. They want something and I can’t give it to them. It could be certainty or a guarantee, or even that they want more therapy, and we don’t offer that level of therapy.

BLOOM: When a parent has a question about a child’s abilities in the future, how do you address that in a helpful way?

Anne Kawamura: You have to balance being truthful about what you know about the condition with hope, and leaving room for change. There have been times when I’ve been really surprised to see what the outcome is. When I was first working here I was on the brain injury team. I’ve seen some really dramatic changes there that I wouldn’t ever have been able to predict. So it’s important to leave the door open.
BLOOM: When I speak with medical students they often ask how they can convey difficult news to a parent in a way that won’t be upsetting, as if there’s a ‘right’ way of doing it.

Anne Kawamura: You can’t follow an algorithm. I see that with our fellows who want to know the right way to approach this.
One of the most important things we need to teach is that it’s a conversation that goes back and forth. You never know what will come back from the parent, so you need a great deal of flexibility.

There’s no perfect way of giving a diagnosis, there is not. And you can make mistakes, you can make a misstep, but the idea is that you can recover from that. You can back up and redirect and reestablish a good connection with the family.


BLOOM: What advice do you give fellows when giving a diagnosis?
Anne Kawamura: I try to teach them to find the strengths in every child, and to focus on those strengths. But they have to truly believe the child has strengths, and to help the parents see those strengths if they don’t already. When you interact directly with a child during an assessment you get a sense of what they’re doing really well, and how those things may help them in moving forward in an intervention or in their day to day life. Focusing on strengths is important in providing a window of hope.

BLOOM: I think it must be difficult for fellows to learn that what’s helpful to one parent in conveying a diagnosis may not be helpful to another, because each parent is so unique.
Anne Kawamura: My gut feeling as a health professional is that when someone is upset or suffering I want to fix it. And some of the most useful feedback is that we don’t need to fix it, we may not be able to offer parents something that changes how they’re feeling. We just need to be there. To listen. To acknowledge how challenging it is. To be an ear. The most important thing is that it’s okay to take the time to really hear where the parents are at, to give them an outlet to express how they’re feeling.

Something exciting we’re doing is running a new simulation program so fellows can practise giving a diagnosis with a standardized patient. We have a family leader who has a child with autism who’s been part of building these practice scenarios and giving feedback to fellows. It’s been amazing having this parent’s perspective.
She can tell us how things felt for her as a parent, and how we could have done something differently. I don’t have a child with autism, she does, and having that perspective is really important. The other important thing is practice and learning how to navigate situations.

Part of why I enjoy what I’m doing is that it’s always a challenge and there’s always more to learn. I’m always thinking back to what I could have done differently to make things easier or better. We’ve done two sessions of simulation so far but we hope to be able to offer it to our fellows regularly during their two years of training.

BLOOM: Have your views about disability changed since you began 10 years ago?

Anne Kawamura: When I first started out I wanted kids to get as much therapy as possible. We all have that notion that more therapy is better. Over the years, through talking with colleagues and seeing a lot of kids, I see that there are other equally important things in life, in terms of going out with your kids and playing, having fun with your kids.
I try to talk to families more about seeing their whole child, not just focusing on one thing, like walking, but to focus on the other aspects of their child’s life where they’re doing well and where they also need support. I try to help them focus on all aspects of their child’s development.

BLOOM: Have you seen any changes in children’s rehab?
Anne Kawamura: I think there’s more emphasis on participation, even in the research realm of things. Before, we were focused on ‘what’s wrong,’ for example, treating the stiffness in the muscle. Now we’re still treating the stiffness in the muscle, but we’re more interested in how treating it influences what the child can do, how they participate in an activity and their quality of life.

BLOOM: I assume your job is stressful because supporting families takes time, but your time is limited?
Anne Kawamura: Peggy Curtis is the nurse I work with and we work really closely together. We have a schedule and demands to get our wait list down, but we try to make it work each day, one step at a time. We never know when a child and family will need more time, and we want to be flexible to meet the needs of the families coming that day. So if someone needs more time, we figure out a way to make it work, even if it means bringing them back for another visit.
BLOOM: What are your hopes for the future?

Anne Kawamura: Right now in addition to my clinical work I’m doing a lot of education overseeing our program for pediatricians who are training to become developmental pediatricians. I’m also doing a master’s in Health Professions Education, which I do long distance through the University of Illinois at Chicago.
I love what I do and I don’t ever want to leave the clinical side. I like working with families and the kids I get to see and follow up over time. To see them growing, changing and maturing is the part I enjoy. And I love teaching too.

BLOOM: If you could give yourself advice when you were starting out, what would you say?
Anne Kawamura: I think having a good mentor in the field is important, in terms of balancing workload and the rest of your life.

There are stressful cases where you feel you don’t know how to help or how to resolve a situation and having someone to talk to is really important. Earlier on I had mentors like Darcy Fehlings or Golda Milo-Manson. And now I could still knock on their doors, but I have other people that cross disciplines, like Peggy and the other colleagues I work with.

You need many mentors and they will be different people at different times.

Filmmaker Kelly O'Brien on grief, siblings and honesty


A recent BLOOM night focused on filmmaker Kelly O'Brien and a screening of Softening, her film about raising her son Teddy, who was born with brain damage and a grim prognosis. 

Softening is a candid story about a mother's love and pain, a sister's magical bond, a father's joy and devotion and a little boy's experience of the world. This Youtube clip is a portion of an interview we did with Kelly following the film. 

A condensed version of Softening that focuses on Teddy and his sister Emma was posted on The New York Times. Thank you Kelly!

Taking steps, together, with 'Upsee'



































By Kara Melissa Sharp

When I first heard about the Upsee, I knew I wanted to be a part of the trial. A device that would allow Sebastian to walk with me, attached to a vest and harness, just made sense. Ever since he was a baby and first started to bear weight and walk, we were holding him up.


He does not have the upper body strength to do it on his own, his muscles cannot work together and give him the balance and strength he needs, so we were that strength.  

Hunched over, we held him up, hands under his torso, so he could move one leg in front of the other, because that’s what babies and toddlers do. They learn to walk. We were so excited at his ability to move his legs but what made us happier was his own happiness and the excitement he felt with each step.
 
Fast forward to today. Sebastian is almost six years old and uses a wheelchair to get from one place to the next. He also uses his Kid Walk walker to walk the halls at school and around our home on the weekends. He especially likes walking outside in the summertime and kicking a soccer ball around. Although his Kid Walk does have a fairly open front, he is still very well supported, which means he’s surrounded by the equipment itself. He still gets excited with each step and loves moving around. It give him a sense of independence.

But we can’t take his walker everywhere. He can’t get up a hill in it. It doesn’t fit in our car with his wheelchair and luggage when we take a road trip to see his grandparents and cousins every few months. It stays at school during the week. This piece of equipment that gives him independence, as well as therapeutic exercise, has its limitations. When we take a walk to the park as a family, Sebastian is in his stroller and his dad gets him out and helps him walk from the swings to the slide. He is hunched over, hands under Sebastian’s arms, holding him up. He then goes down the slide with him, or sits on the swing with him.


Including Sebastian in everyday activities that all children his age experience is important to us. We modify whatever we need to to make it work. As Sebastian grows, even though he loves to cuddle, he doesn’t necessarily want to be carried everywhere. As a young child, it’s also important to me that he’s not in his wheelchair all the time. Especially when he was in pre-school and his peers would often engage in play at floor level. I want him to be in different positions to help him grow and develop. I want him to be invited and included in his peer groups whenever possible.

Enter the Upsee. A product invented by a mom whose son also has cerebral palsy. A mom who wanted to walk around the neighbourhood with her son, but didn’t have access to equipment like a Kid Walk. A mom who wanted her son to learn what his legs were and what they could do. A mom who wanted to go camping and involve her son in family activities. 

The Upsee is a vest, harness, waist belt and double set of sandals. It is a device that allows a child to stand tall, while being connected to a parent who holds them up, hands free. Both feet are side by side and the action is similar to a child standing on your feet to dance, but they are parallel instead. You work together to walk together. But your arms are free, and your child is facing the world, no barriers.

The first time I used it, I struggled. I wanted to walk and I wanted Sebastian to walk. Instead, I had to wait for his cues. I had to be patient and let his feet take the lead. Otherwise we wouldn’t be in sync. Once I realized this, I could feel his left leg struggle since his hip is somewhat displaced. I felt his right leg leap forward with ease. And we walked around our home. 

We walked through places that his walker doesn’t fit. He saw things from a different perspective. We counted steps and he got excited, picking up the pace a bit. When he tired, we stopped and stood together for a break. As we did so, his younger sister came toddling up to him, threw her arms around him and gave him a big bear hug. After the shock of such a spontaneous interaction between my children, I helped him hug her back. The following week, his sister asked me to stand Sebastian up every day when he came home from school so she could hug him. She can’t hug him when he’s in his walker. And often, she’s trying to help push and steer him. When he’s in the Upsee, she comes and grabs his hand and walks next to him.


Recently, I was invited to attend the Upsee launch in Northern Ireland with a group of other parent bloggers. I took my family and the Upsee with me. We decided to make it a family holiday and did some touring around, including a trip to the coast and the Giants Causeway, which is full of hexagonal shaped rocks leading into the water, like a bridge trying to connect Ireland and Scotland. Although the path to the Causeway was paved and accessible by bus, we chose to take Sebastian in the carrier and brought the Upsee along with us. Once there, he was able to walk along the rocks with his dad (see photo above). I also carried him on my back in a carrier and enjoyed that. But it was difficult for him to see over my shoulder all the time.

When he was in his Upsee, he could feel the sun on his face, felt the uneven ground beneath his feet. His chest was stretched wide open in his vest, which is important since he tends to hunch forward, especially in the carrier. At one point a new friend asked us to pose for a photo. Suddenly, I was overcome with emotion. Here we were, all standing together, in an exotic, rustic locale. I wasn’t holding him. We weren’t crouching down to be next to his wheelchair. We were all standing there. Together.


After the Upsee launch, the media posted a photo of three beautiful children, whom I had the pleasure of meeting, standing tall and taking steps in the Upsee with the support of their parent behind them. The photo has gone viral in the special-needs community. Everyone is very excited about the opportunity these children have to explore the world around them in a new, very inclusive and interactive way. And everyone wants one for their own child. I am so excited to be a part of the buzz and help get the word out about the Upsee.

I had the pleasure of meeting the team behind the Upsee and touring the factory where it is made by local folks in Belfast, making a living wage. The company believes in its product and wholeheartedly wants to make life more accessible for kids with physical disabilities and make sure they can be included. It feels wonderful to be a part of something that can change the lives of so many families. Yet despite all the positives, I have read some negative comments about how the Upsee is trying to ‘normalize’ these kids into walking in a society that places such importance on walking. Although I can respect this point of view, I don’t see the Upsee in this way at all.


I see the Upsee as an accessory that can make certain things, like travelling and off road adventures, more accessible. I see it providing Sebastian with therapeutic exercise which is especially important when we are away from home and don’t have access to his walker or other standing equipment. I see us taking it to the park so that his dad doesn’t have to bend over to hold him up to walk around, taking a break from his stroller and interacting with his sister and other children.

I don’t see it as something that is trying to ‘normalize’ children who cannot otherwise walk. I don’t think that it says walking is better than using a wheelchair. I see it as something that can complement our lives, which can otherwise be restricted by obstacles. I think it also supports independence, even while being supported by an adult. I don’t think it says, "You are broken, I’m going to fix you, because walking is better." My son loves walking. He wants to walk. He needs help to do it.

He also likes being in his wheelchair, probably because we refer to it as his Red Racer and he goes fast in it. But also because it gives him the support he needs to eat and do another activities he cannot do independently, and he knows that. The Upsee is designed for children aged two to eight. This is a huge time period for development for children. Having access to different positions, experiences, and peer relationships is imperative for optimal growth. The Upsee helps with all of these.
 
I see Sebastian’s happiness in walking and interacting with the world around him in a way which feels free of barriers, echoed in the smiles of the other children I have met using the Upsee. I want my child to be included, in everything. And the Upsee helps make that not only possible, bit easier. 

Finding time to 'just breathe'

By Kate Wilson

In my mid-20s, my father suffered a serious heart attack. One of the things he was prescribed to help in his recovery and dealing with stress was mindfulness. I didn’t know much about it except that he would make a daily retreat to the basement to lie down and “just breathe.”

It seemed a bit odd and a bit simplistic, but it worked for him so I didn’t question it. I actually didn’t think much about it at all. Until, of course, I needed it.

A few years later I became a mom and things started to fall apart.

For the first 25 years of my life I was the picture of cool, calm and collected. I took things as they came: I didn’t let surprises get me worked up or the bad stuff get me down. I was used to success. Easy-going was all that I knew.

I thought motherhood would follow the same course. It didn’t. From the beginning it was harder than I thought it should be. And the concern that something wasn’t quite right with my son was confirmed when we discovered he had suffered a stroke before birth and was diagnosed with cerebral palsy.

I didn’t handle it well. At all.

I started to unravel. There were days when I felt I couldn’t breathe. The smallest thing would set me off. I was having anxiety and panic attacks. It was scary and I knew I needed to find some way to regain control if I was going to help my son.

This is when I started to look at mindfulness in a serious way and use it to feel better and be a better parent.

Mindfulness is awareness. It is about learning to breathe and be present in our lives, in the here and now. There are no mantras or affirmations. There is no pressure to do it right. It is not some warm and fuzzy fad.

In the simplest of terms, just learning to breathe—and taking the time to do that—did make my life better. It has helped me out of dark and challenging times and continues to help in many areas of my life.

Making time

Part of it is that I take time for myself. Mindfulness was something that I could do in the comfort of my home at a time when I wanted to do it.

We don’t have a budget for me to go to the gym or start a yoga class. I did try those things and it was pressure to get me to go, especially because the best time to go was 4:30 a.m. Then I would feel bad that I hadn’t gone. Counterproductive.

Instead, I got books by mindfulness master Jon Kabat-Zinn and got to work reading. Some of the books are thick and get into the science of mindfulness, but I connected immediately with the concept and practice. Reading case studies of people who’d been helped and understanding the science helped me see its practical use.

I practice mindfulness in two ways. One is a formal practice of mindful meditation, which sees me lying down or sitting for 10- to 45-minutes and focusing on my breathing. I can do this alone or be guided with audio recordings.

The second way I use mindfulness is to integrate it into my everyday activities. I try to be present and aware of myself in the moment.

It may sound easy, but mindfulness takes work and commitment. There are periods when I haven’t taken the time and it shows.

And of course my life still gets stressful and I still have bad days. I do react poorly sometimes, but mindfulness helps me recognize the old reactions and work to change the behaviour.

Mindful parenting

One area of my life where I’ve benefited from integrating mindfulness is in how I parent. Mindful parenting is something that may seem subtle and simple in practice, but its effects can be profound if you’re putting in the work and paying attention.

I picked up Mindful Blessings: The Inner Workings of Mindful Parenting, a book by Kabat-Zinn and his wife Myla. I was skeptical, even after reading Kabat-Zinn’s other work, because I thought it might be too warm and fuzzy for me.

But this core message was there and made sense:

“…mindfulness—cultivated in periods of stillness and during the day in various things I find myself doing—hones as attentive sensitivity to the present moment that helps me keep my heart at least a tiny bit more open and my mind at least a tiny bit clear, so that I have a chance to see my children for who they are, to remember to give them what they need most from me, and to make plenty of room for them to find their own ways to be in the world.”

Awareness

I needed to better understand my son to build a relationship with him. I needed to see how my reactions and behaviours affect him deeply and how my role is to be his guide in the storm.

For example, my son babbles a lot, but has few distinct words because the mechanics of his speech have been affected. It’s hard to communicate when someone can’t use words to express all the things they are feeling and thinking. But with patience and taking more time to pay attention, I’ve learned how to pick up what he’s telling me without words. I saw that he was using the same bodily response to say yes, so we revisited teaching him adapted sign and he was immediately in better spirits because he had tools to talk to us. I get down to his level and have a conversation with him so that we don’t get to the point of frustration. He’s a good listener and understands what I’m asking so I can explain things to him. We have learned so much about communication and how it is possible and quite meaningful without words.

My son can get overstimulated in noisy situations where there are lots of people. By choice, a crowded, rush-hour bus is not part of our lives anymore. But if we find ourselves unexpectedly in a traffic jam, I react calmly to get him to focus and feel safe. I’ve also become very comfortable singing his favourite songs in public, like no one is listening.

Acceptance

I worry a lot less about what others are thinking because I know that their understanding is not mine. Many people don’t know that it’s possible for a child to have a stroke in utero. Their responses to my son can come from not knowing anything about him, or his disability, so I don’t take them personally.

I’m not a bad mother who can’t calm her crying kid down. Many people see a beautiful, happy kid, but some don’t. I used to stare back or get upset. Now I accept it and move on to focus on what is really important in the moment.

My son wears braces, he drools a lot and doesn’t have many words, but he is a kid. He is my kid and I adore his company so I focus on being with him more and worry about what others think less. Besides, his huge smile and wicked sense of fun often soften the hardest stare.

I know that this attitude will be challenged as he gets older and his disability becomes more visible, the gap between him and his peers more apparent. It will be especially hard to lead him to this same understanding as he begins to personally feel the distance, notice the stares and feel the misunderstanding of his disability. But right now I deal with right now. 

I take more time in general to just be in the moment. This is a big piece that mindfulness provides. I used to be so tightly wound because every little thing was on my mind all at the same time. Now, when I’m practising mindfulness, I’ve  trained my brain to focus on what’s going on right now and cut out the clutter of all the other thoughts in my head. Being in the moment has become such a cliché phrase, but what a revelation it is to live it. I can just focus on being with my son, even if that means reading a book about trains 20 times, and not worry about disability forms that need to be submitted or laundry that is piling up.

And I accept the pace of his progress. It can be fast at times and it can be slow, but overall it is more like a marathon than a sprint. My son might walk, but not in a couple of months or with a couple of blocks of therapy. I have come to appreciate and accept that what mobility looks like for my son may not be what it is for most kids. I must be content to work with him at it a bit each day and see the small, but exciting ways that things are coming together.
 
Self-compassion and gratitude

Ultimately mindfulness has allowed me to truly understand that my son is just a kid who’s trying to figure out the world around him and isn’t working with the same experience and information that I have. It’s my job to help him understand this world and his place in it. And to be easier on myself while I’m at it.

“’Perfect’ is simply not relevant, whatever that would mean in regard to parenting,” write the Kabat-Zinns in Everyday Blessings. “What is important is that we be authentic, and that we honor our children and ourselves as best we can, and that our intention be to, at the very least, do no harm.”

It’s also important to see the lessons he teaches me. We often have moments together where he’s able to tell me so much without words. For example, he’ll put his left hand on my face, tilt his head and stare into my eyes with big smiling eyes. This is his look of love. This is one of the ways he tells me he loves me, and I savour it. And he takes each challenge and bit of work as it comes, motivated and content to keep on trying because that is all he knows. And he has a fantastic sense of humour, which reminds me to be more joyful everyday.

Mindfulness is a huge part of my life now and it’s helped me believe that life isn’t always easy, but it is good. I just have to look for the opportunities to enjoy the good stuff.