Monday, June 25, 2012

How to write 'the whole truth'






















Author, teacher and editor Kate Hopper has dedicated most of her creative energy to one thing: motherhood. The Minnesota mother has written extensively about the topic – the good sides and the bad – for years. Now, she wants to help others do the same. Kate teaches a class called Motherhood & Words, in which mothers learn to relay their experiences through creative non-fiction. This spring, Kate also released a book called Use Your Words: A Writing Guide for Mothers. BLOOM spoke with Kate about her new book, and the art of mother writing.

BLOOM: What can people expect to find in your book?

Kate Hopper: My goal was to really represent the diversity of mothering experiences. So culturally and racially, but also I wanted to have pieces about typical children next to a mother that’s talking about children with special needs. It expands the community…I think it makes parents who maybe don’t have a child who has special needs take a step back and be like ‘Oh, this is the same as what I’m doing,’ or ‘This is really different than what I’m doing,’ and it kind of allows them to gain an appreciation of each other in our singular communities.

BLOOM: What value does learning to write about a child have, particularly for parents of kids with disabilities?

Kate Hopper: Having a child with special needs …there’s a whole new set of issues that parents are dealing with: coming to terms with how the needs of their child are changing their life, and maybe other children’s lives. And so I think it’s really helps them be able to put things in perspective, and gives them a space to process both the really great parts about what this child can bring to their life, but also the hard parts.

Also, I think that it’s so important to be able to read through other people’s experiences so you don’t feel alone…For example, I have one student whose son had a rare genetic disorder. She was so scared when he was born that she wished he would die. She was so afraid of him. It’s really hard for someone to write that down and admit that they felt that. But she knew that admitting that would help another parent down the line. And that was so important for her I think.

BLOOM: So in a way, writing is therapeutic?

Kate Hopper: Yeah. I think it’s a space to reflect and slow down. Because I think we get into this mode –whether you’re dealing with typical children or not – where we’re always going, going, going. And when you can sit down and take that time to reflect on what you’re going through, you just gain a new perspective.

I see it really is helpful in terms of processing through the experience but also really appreciating what our children do bring to the world, and to our lives, and how that has changed us as well.

BLOOM: Your daughter was born premature. How did writing about that experience help you personally?

Kate Hopper: I actually felt like that’s when I became a writer. She’s a healthy eight-and- a-half-year old now, but it was a really traumatic few months in the hospital and a very lonely winter. I felt really desperate for words, to try to find my experience reflected.

I started to write when she was five months old. I went to the coffee shop near our house and began to get those words out on the page. And I just started to feel like the world was opening up again for me… Just getting words out on paper always makes me feel more connected to the world. I’m certain I have seen that with my students with children who have special needs, just getting their experiences out helps.

BLOOM: Do you have advice for parents who want to write about their kids but are feeling a bit stumped?

Kate Hopper: I always tell people to start with a moment they don’t want to forget, or a moment that really comes back to them again and again. So maybe that is the birth of their child. Or maybe it’s the moment of diagnosis for some people if their children have special needs. Go back to that moment and write it in as much detail as possible, using as many concrete sensory details as they can, and start getting into it little by little… Go moment by moment and let your discovery of it happen.

Don’t censor yourself, especially if you’re writing hard stuff. If you think ‘Oh God, I would never say that,’ or ‘What would people think of me?’ then you’re not really going to be true on the page.

BLOOM: Do you find that many of your students are parenting kids with disabilities?

Kate Hopper: Oh yes they are…I think one of those things that drives them to the class is the need to make sense of their experience and put it in a new perspective and look at their life in a different way.

BLOOM: And what kind of outcomes or feedback have you gotten from parents so far?

Kate Hopper: The biggest thing is being able to write the whole truth of their experience. It’s been transformative for so many parents to be able to say number one ‘This is valuable, my story is important,’ and also ‘How can this help other people?’ …I think that a lot of people feel like they have to make sense of those things and to talk about both the really beautiful parts of (parenting a child with a disability) and the hard parts.

Kate Hopper blogs at Motherhood & Words. Interview by Megan Jones.

Friday, June 22, 2012

Off in a corner



A dozen Ontario children who use mobility devices such as wheelchairs or walkers mapped their movement so that researchers at the Bloorview Research Institute could assess the accessibility of their homes, schools and neighbourhoods. Tablet PCs with Camtasia software were used to sketch the layout of their classrooms and illustrate some of the barriers they face (see example in video). The researchers built on these findings by surveying about 600 school-aged Ontario children with mobility disabilities to identify barriers and possible solutions. Results will be published in the next year. 

Getaways!

An update on Kate!


You heard about Kate when her mother Julie Drury, above, wrote about a new complex care program at the Children's Hospital of Eastern Ontario (CHEO) that she was benefiting from. Here's an update on Kate from CHEO.

Tuesday, June 19, 2012

What do you see?













Last month I gave a presentation to medical and research students in the Bloorview Research Institute called What do you see?

In a nutshell, it was about how Ben was seen medically vs. how I saw him, and how important the parent picture is for kids who can't communicate conventionally. I encouraged the students to keep their minds open and flexible and always be examining their stereotypes and preconceptions.

If you want to hear the presentation (sorry, no video available), click above.

Sharing the stage with me was No Ordinary Boy author Jennifer Johannesen, but I don't have her talk uploaded yet. 

Monday, June 18, 2012

More about Pauline

















A couple of weeks ago we ran an interview with Rick Guidotti of Positive Exposure. Rick – a photographer who used to shoot the world's top models for companies like L’Oreal and Yves Saint Laurent – now travels the globe photographing children with genetic differences. His mission? To “(change) our ideas of normal."

I went into Positives Exposure’s online gallery to choose a photo to run with the interview. Out of hundreds, one jumped out at me. It was of a girl in glasses and her expression conveyed spunk, grit and charm. I asked for this image but was initially sent a different one. I went back to ensure we got ‘our girl.’ It arrived with the name The Amazing Pauline!

We ran the blog and it was only after that I learned that Pauline (photo right) had died five years ago.

I asked her mom, Catherine, to tell us a bit more about her daughter.

Pauline Wells Burzio was full of life and mischief! She loved her friends, school, sports and singing in the church praise band. Living with 18p-, a genetic condition, she endured many surgeries. She died in 2007 at the age of 13 due to a brain bleed after heart surgery. She is survived by her family and three awesome brothers: Ashton, JB and August.

She's also survived by her first ‘best’ friend – Rebecca (photo left above). Says Catherine: "Our families met in 1999 at the Chromosome 18 Registry and Research Society's annual family conference. It was the first time both of our families attended and we hit it off from the start. Pauline was five years old and I think Rebecca was three, but they became fast friends. Rebecca still calls Pauline her first friend."

Pauline’s family lived in Virginia and Rebecca’s family lived in Maryland, so they split the two-and-a-half hour drive by meeting in the middle – for lunch or a weekend outing.

“We tried to visit face to face as often as we could,” Catherine says.

Rick sent me this photo of the pair. You'll notice that Pauline isn't wearing her glasses in this one.

Catherine still volunteers for the Chromosome 18 Registry and Research Society that brought them together. You can read more about Catherine and Pauline here.

Sunday, June 17, 2012

Silent Sunday