Thursday, November 27, 2014

Coming up: Interview with Pia Pearce

Next Wednesday is International Day of Persons with Disabilities.

We're marking the occasion with an interview with Pia Pearce, mom to Kevin Pearce (above), an American snowboarder who was expected to win gold at the 2010 Vancouver Olympics.

Then a crash head-first into ice almost killed him.

Some of you may have seen The Crash Reel, a raw, exuberant film that follows Kevin's wild success, devastating accident, and hospitalization for a life-changing brain injury. The film takes us into the world of Kevin's close-knit family, which includes four brothers, and the gruelling rehab that follows.

Pia talks about how her experience raising one son with Down syndrome and two sons with dyslexia influenced her reaction to Kevin's traumatic brain injury.

This interview is not to be missed. Louise

(Learn more about Kevin's foundation Love Your Brain, which raises funds to improve quality of life for people with brain injury.

Wednesday, November 26, 2014

Sexual violence against our kids: Why isn't it on everyone's radar?

By Louise Kinross

Yesterday I was outraged to read this story about the case of a 9-year-old California girl with an intellectual disability who was sexually assaulted five times in 2010 by a non-disabled student during an after-school program. The assaults began with her being kicked and hit. Her parents sued the Los Angeles Unified School District for damages to cover the long-term therapy they say their daughter needs to treat her emotional trauma.

Sounds bad huh?

It gets worse. The school district hired a psychologist to say that this girl was less likely to suffer emotional trauma because of her low intelligence.

Dr. Stan Katz said that her mental disability would "protect" her from the degree of emotional stress and depression that a regular student would experience from sexual assault. Further, Katz interviewed the girl in 2012, two years after the assaults, and determined that any emotional problems she had at the time resulted from not having a father in her life and her mental disability, not from the molestations.


According to the story, two experts reviewing Katz's testimony said there's no science to support his assertion that low intelligence minimizes a child's emotional trauma.

"I have never seen developmental disability in a child that age used as a protective factor with respect to how they handle trauma," said University of California San Francisco psychiatrist Dr. Lynn Ponton. "In fact," she added, "developmental disability quite often puts them at risk for this type of trauma."

What was the LA school board, charged with educating and promoting the wellbeing of its students, thinking in hiring Katz and his discriminatory and unfounded arguments?

According to a 2012 review by the United Nations World Health Organization, children with intellectual disabilities (and mental illness) are 4.6 times more likely to be sexually abused than their non-disabled peers.

Instead of raising awareness of this heightened vulnerability, and taking steps to protect students, the LA board, through its psychologist, appears to be rationalizing the high rate of abuse of this population: 'They don't feel pain the way other kids do' is the message being sent.

Remember that archaic medical belief that infants and children don't experience pain the way adults do? The idea is being trotted out again here, but in relation to students with intellectual disability.

According to the girl's attorney, the jury was "offended" and "disgusted" with Katz's line of reasoning. They awarded the girl $1.4 million in damages. The LA board attorney had argued that she needed $10,000 to $12,500 for therapy.

In related news this week, this Daily Beast piece suggests that although women with disabilities are at greatest risk of sexual violence, they are not welcomed by feminists working against violence.

"When Stephanie Woodward blogged about #YesAllWomen, she was excited to join the movement and share her own life experiences as a woman with a disability," writes Elizabeth Heideman. "She never expected her post to spawn hostile messages from activists scolding Woodward for trying to 'detract from the real issue' and instead make it about disability."

"Do women with disabilities not count as women?" Woodward is later quoted asking.

And finally, this is an investigative piece into sexual assaults by staff against clients of one of Australia's biggest disability service providers. Disabled clients and former staff "tell how complaints were ignored and whistleblowers targeted, their warnings not acted upon. As a result, two men employed by the organization, and now allegedly a third, went on to rape and sexually abuse disabled clients."

It hurts to connect the dots, doesn't it?

Thursday, November 20, 2014

Why is it so hard?
















By Louise Kinross

"Let me get this straight," my chiropractor said.

"You've had this pain in your neck and shoulders for 28 years, but you've only got $250 to fix it with?"

"Yes?" I said, with a plaintive expression on my face.

I sat on an examining table with my legs dangling in the air, like a child, and the doctor sat in front of me. I'd seen him for a series of sessions a year ago when my knees got really bad. Now my neck and shoulders, which I've had ongoing problems with, were burning. 

The night before I had to lay down on my back at 7 p.m. 

"It hurts too much to carry my head around," I explained to my husband, who was sitting in the other room. 

Shortly after that I called out: "I can't pick up my cell phone." 

"Why?" 

"It's too painful. I'm lying here with nothing to do. But it hurts too much to hold up the phone."

"Do you know how pathetic that sounds?" he said.

The chiropractor had taken a video of me to show that when I thought I was sitting with my shoulders down and even, they were completely wonky: one was way up and the other way down. When he felt my spine he said it wasn't "where it should be" and he wanted me to have an x-ray.

Why had I let things go so far? 

Just the week before when I saw my therapist I told her I was burnt out, even though I was taking a vacation day. "That's what you said the last time I saw you," she said. 

I was into the fifth week of a very exciting research project at work: nurses from across our three inpatient units were coming together for 90 minutes a week to write and draw about their emotional reactions to working in children's rehab. I was running the groups with two amazing researchers from the University of Toronto: one the illustrator in residence of the medical school, and the other heading up a new series of humanities courses at U of T, who was also  a Phd in English.

But it was something extra, on top of my regular work.

Sometimes I'd do a fantastic interview for BLOOM at work and I'd get so excited about it that I sat up late at night to finish it at home. I was also doing some personal writing at home, so after a long day of writing I'd come home with the intention of "writing" some more. 

"No wonder your shoulders are hurting, hunched over like that," my husband said as I sat at the dining room table tapping at a laptop in a distinctly unergonomic fashion.

In the morning there was the ritual of putting my son's brace on his leg and pulling him up to sit on the couch at a 90 degree angle. If I didn't take the time to lift properly, I wrenched my lower back. My husband had done this one too many times and refused to do it again, so we were no longer alternating.

"You can't keep adding more and more things to your plate," the therapist said. "You're already working full out at work and with the extra demands of your family. How about for the next three weeks you don't do any writing at night? Instead, you recover. You take a nap, or you read, or go out or do something that is completely relaxing. You take care of yourself and let yourself recover."

"Three weeks?" I said, already in a panic. "I don't think I can do it for three weeks. No, that won't happen. I'm 50 years old. Time is running out. Perhaps I can tell myself that I will pick certain days when I go home and I don't do anything at night. That sounds more realistic to me."

The therapist looked at me with a sad, knowing smile.

That night I got the stomach flu, and the next day I lay in bed, unable to go to work or do anything. It took me all weekend to recover.

A few days later I was sitting at the chiropractor's, telling him my sob story about my shoulders and neck. And it was sinking in that perhaps there wasn't a quick fix to running myself into the ground like this.

Two years ago I had a similar experience of being 'forced' into slowing down when I broke my arm badly

I know the research showing that parents of kids with disabilities have higher rates of physical and mental health problems. 

When my neck and shoulders seize up, I start to project pain into the future. If it hurts this much at 50, how much worse might it get? That freaks me out, because I have to be there to care for my son. I can't afford to be out of commission.

So here I am, 20 years after my son was born, recognizing that I still haven't learned this lesson properly. You know, the one where they say if you don't take care of yourself, you can't take care of anyone else?

And I need to.

Tuesday, November 18, 2014

'I do feel sad sometimes, but Kate isn't'


Last week I shared a new comment written on our most popular post The Invisible Mom by Sue Robins. The Invisible Mom is about how mothers of kids with disabilities can face the same social exclusion their kids face. Julie Drurie, mom to Kate, 7, who has a rare mitochondrial disease and took the selfie above, wrote a thoughtful response on her blog Searching For Solid Footing. We've reprinted it below. She made me think about how my perception of my child's exclusion may differ from my child's perception. Interested to hear your thoughts. Louise

'I do feel sad sometimes, but Kate isn't'
By Julie Drury

The first time I read The Invisible Mom I didn’t think that was me. I understood it and felt strong empathy for Aaron’s mom, but I didn’t think I felt the same pain and angst of exclusion as she.

But then I started considering how Kate is ‘included’ and ‘excluded,’ deliberately or not. I reflected on the moments where her differences stand out so starkly and where I hustle to make excuses for her…

…“she can’t hear you.”

“yes, she’s 7…but she’s more like a 3-4-5 year old.”

“she is signing or saying this that or the other thing.”

“well, she could come to the party…but maybe I should come too…to help…and she’ll probably have to leave early.”

She’s the kid who leaves early from school, is often sick, wears the funny helmet, has a tube in her nose, doesn’t speak, sometimes hits the other kids, is often in her wheelchair stroller because of fatigue, runs away and won’t come back, doesn’t understand when you ask what her favourite colour is (but she can tell you her name and how old she is!!). Some (few) make an effort to include Kate, but playdates, birthday-party invites and get-togethers with the girls are not really part of her life, sadly.

She loses her peer group annually as others grow and mature and learn and she is left behind. Her reality is that adults are her friendsand the few children whose parents facilitate them staying engaged with Kate.

Do I feel left out? Sometimes, yes.

Am I sad? Yes, I grieve ‘loss.’

More importantly, does Kate feel left out? No. Is she sad? Nope. She has her friends at school that will change year to year, but that she values nonetheless. She has her friends at Rogers House (Myah, Moon Pie, Buffa, Mat-teww), and her adult friends (Christine, Kat, Erin, Kara, Adrienne, Vanessa, Steffi, Tall Steve, and more) that she loves. She is developing her own friendships and through those connections, I am finding my peer group of moms and friends as well. A different peer group than what you would expect, but a very valuable one.

I don’t think I am an invisible mom. I think people see me. If they don’t, I usually make them see me and Kate.

I wish for so many things for her. I wish for playdates and friends and movies and outings and independence.

I do feel sad sometimes. But Kate isn’t. Not yet. For now she is happy. Like Aaron’s mom I hope she never has to understand or become aware of the pain of invisibility.


Sunday, November 16, 2014

'Who is teacher?'

I just read this exquisite piece by Kari Wagner-Peck, above with son Thorin, 8. Thorin attended Grade 1 at public school last year in Portland, Me. Kari is a fabulous writer who blogs at A typical son about raising her son with Down syndrome. Make sure to bookmark her blog. She always has a unique perspective. I can't wait for the next one in this series! Louise

By Kari Wagner-Peck

We started homeschooling or unschooling or what you might call practising loving and respectful learning in September.

This is the beginning of the next chapter in our lives. How we got to THAT is a whole other story I have not wanted to write about. Expect a post on that soon entitled something like: It Was Not Just One Reason.

When I explained to Thorin we were homeschooling he had two questions. The first was easy to answer:

“I call you Kari?”

“If that’s important to you, sure you can,” I said.

“Thanks you, Mom.”

The second question was difficult and painful and probably at the heart of learning at home:

“Who the teacher?” he asked.

“No one is the teacher,” I said.

“No! Who the teacher?”

“We could both be the teacher?”

“No!”

“We are both the student?” I offered.

“No! Who the teacher!” he screamed.

“You need to learn reading, writing and math. I have to figure out how to help you by learning how to help you. Confusing, right?”

Silence.

“Thorin, I am not sure what I am doing, yet.”

“No!!!!!!!!”

“I am your mom. I am learning, too. I don’t want to be a teacher. I want us to be a team.”

Silence.

“Can we be a team? See if that is okay?”

Long silence.

“Can we try?” I asked.

“Okay, Kari.”

THEY say start with what your child loves. So, Thorin and I are writing a book together. My co-author and illustrator (see below) does not want to share anything but the central characters in our story although we have a title, character names and a plot. As a team member I have to honour his request.

Thorin’s word use has quadrupled, reading and math levels have increased more in two months than the entire first grade. Most importantly he is happy again.

I have learned that the greatest teacher is: belief.

Expect more on all of IT.


Illustrations by Thorin.



Wednesday, November 12, 2014

Left out

I want to share a comment written last week on our most popular post.

The Invisible Mom, written by Sue Robins, has had almost 22,000 views and generated 80 comments.

It's about how mothers of kids with disabilities can face the same social exclusion their kids face: "In the foyer of every elementary school there's a gaggle of moms standing in a tight circle, waiting to pick up their kids," Sue writes. "In the 10 years I've parented my son Aaron, I’ve never cracked that circle. I've walked past that circle hundreds of times and nobody has ever shifted—ever so slightlyto give me room to join in."

And not only do these 'typical' parents ostracize parents like Sue, she writes, but they seem to sanction 'leaving the kid with disability out' when it comes to their child's birthdays and other get-togethers.

Sue wrote her piece over a year ago, yet listen to how it hit this parent.

Do parents of kids without disabilities have any inkling that this is reality for many of our kids? If they did, would they care? Louise 


Thanks for writing this. It has been in my heart for years. Yes, I know too well the gaggle of moms and dads. Like a gauntlet to run every day.

Every year I have hosted a birthday party for my child, every year something fantastic: a bouncy castle, paid entertainment, tons of loot. Every year the kids came, sometimes even ones not invited. But the reciprocal invitations never arrived. This year, he turned 12, and only one child showed up, despite the party being held somewhere all kids love. And this one kid probably came because I pay him to do yard work. I guess at 12 they are all too cool to go to the "retarded" kid's party. My sweet loving boy spent his birthday in tears. How do you explain it to a child? I don't know
.

Tell us your story

What do you want people to know about being a special-needs parent? 

What do you wish people understood about parenting a child with a disability or chronic health condition? 

Tell us in the comments! Louise