Thursday, August 27, 2015

Mom knits 'special needs' story into art

By Louise Kinross

Kathryn Ruppert-Dazai (above) is a Toronto textile artist who plans to create an art series called A Failure to Thrive. These large-scale works will reflect her experience parenting a child with special needs.

BLOOM: Can you tell us a bit about your son and how he's affected by his disability?

Kathryn Ruppert-Dazai: Well, our son was our second child, so straight away I knew something was wrong. He was born with very noisy breathing that made him sound horrible. People would stop me every day and ask me if my baby was all right. No, he wasn't. But we were told it was normal.

My baby was afraid to eat and wasn’t gaining weight. We tried everything to get him to eat and I was on medication to increase milk production but he wanted none of it. No bottle type or formula worked.

Sometimes, though, if I sat quietly in the dark in my stairwell he would drink a little bit of milk. So that’s what we did. One day a Mom friend came over and offered to feed him. She had no problems breast feeding her kids and lots of milk and he pulled away from her breast like it was a threat. I was losing my mind.

Nobody had answers, so I kept going to the emergency room to show my sick child to different doctors looking for help. I was grateful that he wasn’t my first child because when doctors said I didn’t know how to breastfeed properly, I’d say that’s not it, my first daughter was perfectly healthy and breastfed fine. I would tell them he’s afraid to eat. Our doctors told us to force feed him at all costs. I honestly think they assumed I was unfit.

My husband had the job of force bottle feeding our son in the basement and I could hear him scream like he was drowning. That whole time period was a blur. I thought I was losing my child but nobody had answers so I would spend the day taking care of my two year old and try every 20 minutes or so to feed the baby in the dark stairwell in hopes he’d eat. Then at naps I’d watch his chest for laboured breathing and drive to emergency every time he looked like he was breathing with his whole ribcage. They would triage him in. He had a couple of unnamed infections and he’d get x-rays and IVs and we’d stay in the hospital for days. We were always discharged and left without any answers but at least he’d have eaten because of his IV.

I kept going to the hospital for help, seeing specialists and following all the doctors’ advice. We thickened his foods, started him on solids and gave our infant his medications religiously. When our son was six months his doctors suggested a feeding X-ray and they found he had been aspirating his food all along. He wasn’t able to coordinate his eating with his breathing properly. The chest infections were milk in his lungs and he could have died so many times in those first six months.

He had emergency surgery to cut away tissue from his larynx. That saved his life. The day after the surgery he was starving and drank so much breast milk. I cried. I thought it was all over and we were good. But it wasn’t over. The list of things we were told about our son is long: laryngomalacia, GERD, ‘failure to thrive’ with hypotonia, and later we learned he had global developmental delay, sensory processing disorder and childhood apraxia of speech, possibly presenting now as a phonological disorder.

Everything was difficult for our son: eating and fine motor skills. He couldn’t sit up, walk, control behaviours, sign, or speak. We were given his MRI results last year and they showed that our son’s brain has two profound areas of congenital malformation. We know it’s genetic. The doctors confirmed that when I asked if it could be something I did when I was pregnant. I told them that when I was six months’ pregnant we were renovating an old cabin in the woods and I thought I had caused everything. They said in order for my son to develop such severe malformations from to the environment, I would have had to have been pregnant in Chernobyl. It hurt to hear it put like that.

So at this point it’s an unnamed genetic disorder that’s not my fault (though my neighbour thinks it’s because of my age).

Today our son is almost five and he’s awesome in every way possible. He has worked so hard and has been in speech, occupational, behavioural and physical therapy for years. He is walking, has stopped self-harming and recently started speaking. I believe that the early intervention therapies have been the key to unlocking our son’s abilities. What our child has is neurodiversity. His brain has a different anatomy. There is no one perfect brain in the world. His brain is as it was meant to be.

Early intervention therapy and the homework we do is helping to set pathways in his brain for speech and motor planning. It’s hard and it’s been slow. He kicked his speech therapist and his OT today but he also caught a basketball in his hands for the first time ever.

Our home looks like a therapy gym and our tub is currently full of coloured balls because some nights it’s our ball pool. It’s taxing on him and not being able to be understood makes him so frustrated.

It’s hard on the whole family because his diagnosis of apraxia requires two sessions of speech therapy per week. Nothing close to that exists in the public health care system. So, like most families, we’ve had to do private therapy to supplement the inconsistent public therapy and it’s beyond horribly expensive. But it’s working and he’s worth everything so I'll do anything I can for him. I have no ‘off’ button, I’ll never stop working for his happiness.

BLOOM: Can you describe the kind of work you do as a textile artist? Why do you want to address your experiences with a child with disabilities in your art?

Kathryn Ruppert-Dazai: Sharing stories is an essential part of being human. I am a storyteller transforming a format traditionally reserved for painting. I use a toy knitting machine and a computerized knitting machine to create large-scale 'knitted canvases' together with hand-crocheted, often recycled fibers to relay narratives. I work large scale. The works are usually about six feet by six feet, like large 'knitted paintings.' With the tactile nature of textiles I am able to explore more difficult subject matter while still inviting the viewer into the work. In keeping with the tradition of visual storytelling through textile art and craft, I’m making works that tell my story. My past works have been semi-autobiographical and so now that I have children and am able to get back to my studio, the new works will focus on maternity and motherhood. I want to illustrate my stories and others’ stories about parenting and especially special-needs parenting. Stories that are often not given a voice in contemporary art because it’s not sexy subject matter.

BLOOM: You chose the title A Failure to Thrive for this series because your son was labelled with that diagnosis when young. My son was also diagnosed with ‘failure to thrive’ and I found it devastating (because every mother does everything she can to help her child thrive). How did this label impact you?

Kathryn Ruppert-Dazai: The label is devastating. It’s such a horrible term to put on a child. It made me think my son was ‘failing’ because I’d failed him. It’s a horrible weight on any parent, especially if you have no idea why your child is ‘failing.’ It’s scary, with guilt. The term ‘failure to thrive’ replayed itself in my head so many times over those early years and that’s why I named my new art series after it, in honour of that horrible label. I know they tried to rebrand that department of the hospital and it’s now called Pediatric Consultation but most medical staff members still used the ‘failure to thrive’ title around me and my son.

BLOOM: You plan to cover a number of parenting themes in your art. You mention “shame” and “feeling ostracized” by others with ‘normal’ children.” In what ways has your experience made you feel isolated and ashamed?

Kathryn Ruppert-Dazai: I felt ostracized and alone a lot of times. I felt shame too. My child spent a lot of time screaming and I truly thought nobody wanted to be around us. I’m sure some didn’t and I lost some friends. My child would sometimes bang his head on the ground in public and I would try to follow the behavioural therapist’s strategy but I felt like everybody desperately needed to stare and watch us. I would feel hot inside and embarrassed and just not want to ever leave the house. But like most mothers I had a rebirth and found my courage and became a better mother because of those experiences.

I’m so over those old fears and I’ve found some support groups online for people with similar disorders and their parents. It’s been really helpful to have an online community to ask questions to regarding issues around my son’s specific conditions. I remember early on taking a course to learn to communicate with my non-verbal child. It was an amazing course and the other parents involved had children who were non-verbal also—but each with different reasons. Some had genetic disorders and some were undiagnosed like our son was at the time.

In the end I found it difficult to confide in other special needs parents too. It seemed like everybody had it hard and in a different way so you couldn’t complain for fear of hurting someone’s feelings. I didn’t want to complain about my child’s issues when I knew some of the children in the classroom were never going to speak because of their specific genetic disorders. So I found it hard to connect with other special needs parents for that reason and because between therapies and working, nobody could spare time to get together. Plus, who has money for babysitting when everything you have is going to private therapy!?

BLOOM: I noticed that you have some art works planned related to therapy and our healthcare system. Can you describe what you hope to cover in one of these?

Kathryn Ruppert-Dazai: One of the artworks I’m making is called ‘On Block, Off Block.’ I plan to knit the words in repetition on a large scale and exhibit it inside a glass shadowbox. If I’m accurate about it, it should read: ‘Waiting List… On Block, Off Block… Age Out of Services.’

My hope is to open up a dialogue about the public therapy block system and how insufficient it is for children who require consistency in their therapy. It’s a therapy model based on funding in my opinion. For those who don’t know, the ‘block system’ means your child will receive roughly eight weeks of therapy, once a week, from a therapist and then go ‘off block’ for six months, with no therapy.

I remember our developmental pediatrician saying that I would have to supplement speech therapy for our son, so I should save roughly $12,000 to $15,000 a year and that he could use some occupational therapy too, which would be additional. I thought she was bananas. Seriously, this is Canada!

So, I set out researching and calling every number I could find looking for the therapists that were specifically there for high-needs cases—for children with neurological disorders who required therapy on a regular, consistent basis. But no, I found out after a lot of researching, phone calls and visits with my MP’s aid that in fact there is no building that houses therapists for free therapy in the amount that each case requires. Just like there are no unicorns.

BLOOM: What do you hope to learn by exploring special-needs parenting through your art? And what do you hope people who see the exhibit take away?

Kathryn Ruppert-Dazai: I don’t know. I’m not sure. I’ve been thinking about this series for years so I feel like it’s given me some perspective on my parenting and on our life. I would love other special needs parents to see the work when it’s finished and feel maybe less alone. We all love our children. This is in no way a series of works complaining about my child or complaining about how the health care system let me down.

I am trying to put the stories out there to share the human experience and from that honest place to start a dialogue with the community. I’d love for people to stop using the 'R word.' If I get one person to see the works and stop using that word, then all the hours I spent knitting in the basement will be 1000% worth it for me.

I feel grateful for the life experiences I’ve been given. It was hard to find my way for a while but now I’m a damn good mother and I never compliment myself on anything! Ever! But I mean it. All I want is for my children to be happy and seeing them both happy is my deepest pleasure in life. I hope they like the works too and aren’t offended by my sharing their life experiences with the art public. Who wants to live behind a façade? Life is too precious not to share the experience with each other.