A lesson in love

Donna Kirk is the author of Finding Matthew: A Child with Brain Damage, A Young Man with Mental Illness, A Son and Brother with Extraordinary Spirit. Here she shares the challenges and joys in her family's remarkable journey to give Matthew (above left with his sister Kelley) a good life. Thank you Donna! Louise

By Donna Kirk

“Your son is a vegetable with a heartbeat.”

The head pediatrician at the hospital dismissed our first born child with a wave of his hand. My husband Ed and I were dumbfounded.

“Your child will never know you or progress beyond the infant stage. I recommend that you institutionalize him as soon as a bed becomes available. I’ll give the consent forms for the home to the neo-natal nurses.”

Our child’s name was Matthew. He had suffered oxygen loss at birth and could neither suck nor swallow. He was 10 days old and had been at the children’s hospital for nine days. As we listened to the doctor, I held our beautiful blond baby in my arms. His blue eyes looked up at me and he gripped my finger with his tiny hand. Matthew started to cry and so did we. The doctor looked at him, then turned and walked away. He hadn’t once called him by name.

We dubbed this pediatrician Doctor Doom and repeated his words to the nurses. One nurse handed us a box of tissues and told us she had 40 years’ experience with brain-damaged babies. In her opinion, Matthew would progress. The nurses became our first advocates. We ripped up the consent forms for the children’s home.

Two months later we brought Matthew home. He could swallow, suck and hold his head up and he weighed a robust eight pounds. He was eating, and loving, rice cereal.

Even though he cried day and night, we adored our baby. Car rides soothed him and Gordon Lightfoot music put him to sleep. I never forgot Doctor Doom’s prediction that Matthew could die at any time and kept him close to me during the day. At night, I checked him often. We were glad he was our only child and we could direct all our attention to his needs.

Matthew smiled when he was four months old and turned over both ways at five months. Our Mississauga pediatrician was our second strong advocate. “Keep doing what you’re doing Mom and Dad,” he said. “Matt’s making great progress.”

At 14 months, Matthew still wasn’t sitting. His left side was weak and he toppled over when we played sitting games with him. One day in a grocery line-up, he was propped up in the cart to keep him upright. A woman behind us watched him with great interest. She asked how old he was. 

“Fourteen months! He’s still not sitting?” she said. “Is he retarded?”

“Not as retarded as you are,” I said. Matt and I cried all the way home.

Ed and I decided our son needed muscle power and enrolled him in swimming classes in a program that offered instruction to children with disabilities. Matthew soon learned the route to his lessons and cried all the way there. I cried during the session because I thought they would drown him. Afterwards, he laughed all the way home and I laughed with him. He was so smart.

In 1972, at age two, Matt was the only student from the swim program chosen for a documentary to be broadcast on national television. Ed, my mother and I watched the filming.

The swimming instructor carried Matthew into the pool and released him under the water. Then she got out of the pool. My mother gasped and covered her face with her hands. When I urged her to watch, she peeked through her fingers. Matthew swam to the side, reached up and pulled himself out, then sat on the deck.

I called Doctor Doom’s office at the children’s hospital. We hadn’t seen him since Matt’s discharge. I told his secretary to make sure he watched “the vegetable” swimming on national television. The next day she called back. Would we please bring Matthew in?

Doctor Doom examined Matthew and declared him to be a healthy two-year old. He actually hugged him before handing him over to me. I was the proudest mother on the planet.

____________

Ed and I wanted more children. I hadn’t conceived since Matthew’s birth so we registered for adoption. Our daughter Kelley arrived shortly after Matt’s second birthday. He refused to look at her, clung to me and cried all the more. Ed and I were up every night with two children. Then, when Kelley was six weeks old, I became pregnant. Our second son, Joseph, was born 10 months later. We had three children under the age of three.

Kelley and Joseph grew and surpassed their brother. They walked, talked, learned to use the toilet and slept through the night. Although Matthew walked when he was seven, he didn’t speak, needed diapers and awoke for many hours every night. I lay awake and listened to his shouts.

Matthew had digestion problems since infancy. He regurgitated food constantly. Then a strange behaviour crept in when he was about five. He started throwing up at will, particularly when our attention was elsewhere. Nothing we tried altered this behaviour.

Ed and I realized we didn’t have the skills to help him. The demands of our complex life overwhelmed us. We were exhausted and our marriage was suffering. 

When Matthew was eight, he went to live at a residence for children and adults with developmental disabilities. Within weeks, he stopped vomiting and learned to use the toilet. Although delighted with his progress, we felt like failures. Strangers were able to help the child we loved.

Even though we visited Matthew often and he spent every Sunday with us, Ed and I never adjusted to his life in a house with 12 other children with disabilities. And, the staffing was inadequate in our opinion. But Matthew seemed happy. He attended local integrated schools where he was a popular student.

At age 18, he started having what staff at the home described as rage episodes. He shouted and twirled in a wide circle, his face red and his eyes wild. These sessions ended with the ingestion of inedible objects: pens, pencils, whole toothbrushes and small plastic things.

Multiple surgeries were required to remove these items. Matthew was diagnosed with Pica eating disorder and autism. The home’s psychiatrist prescribed medication that initially made him docile, then had no effect.

In 1993, Matthew swallowed a rubber glove which lodged in his intestine and burst his bowel. After life-saving surgery, he wore an ileostomy bag for months until his bowel was reconnected.

Ed and I were convinced our son would die at the home. We had never stopped searching for a better life for him, and doubled our efforts. A community agency offered a model of service called homeshare, and they agreed to support Matthew.

In September 1995, at age 25, Matthew moved into a single family home in Oakville. A woman named Marguerite became his new caregiver. There were no other people with disabilities in the home. Matt could roam around his house without encountering locked doors. But all small objects and medications were locked away.

Marguerite  broke Matthew’s habit of leaving his room each night. Although he still didn’t sleep well, now he was quiet. She worked with him to enhance the universal signs he used to communicate his needs. Within weeks, he was calmer and slept better. The anger episodes lessened. Pica attempts were few, then disappeared.

Matthew enjoyed the community each day with Beverley, his job coach. They visited the library, malls, restaurants and the local YMCA. He had a paying job delivering newspapers and a bank account where he kept his money. For the first time in 17 years, Ed and I knew our son had a meaningful life. Marguerite and Beverley supported Matthew for 15 years. 

____________

In 2009, Matthew’s agitation worsened, culminating in a rage incident that required police intervention. Matthew was admitted to a hospital psychiatric ward. A psychiatrist diagnosed him with agitated depression, and over the next year, different medications were prescribed. When they failed to alter his condition for a consistent length of time, we agreed to electric shock therapy.

But a cure for our son’s mental illness was not to be. The day before his first shock treatment, he aspirated food and became critically ill with pneumonia. His lungs, compromised by many bouts of pneumonia, could not mend.
   

After a four-month battle, brave Matthew died on July 6, 2010. My husband and I, Kelley and Joseph, Marguerite and Beverley, and his limitless friends and advocates were heartbroken.

____________

Matthew taught us the rewards of support, advocacy and stewardship. He taught us the joy and despair of unconditional love. He was the person who inspired me most.

It’s hard to adjust to life without him.

Royalties of Donna's book go to Brampton Caledon Community Living, which supported Matthew for 15 years. "My husband and I also give out an award each year called 'The Reese Matthew Kirk Above and Beyond Award,'" Donna writes. "This is a cash prize, plus an opportunity to attend a profession-related course of the winner’s choice. The candidates are employees of BCCL chosen by their peers, who went above and beyond their job description to support the people in their care. There have been three winners since Matthew’s death."

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And the truth shall set you free

I remember when my son was still a baby, a psychiatrist told me that I needed to play a "PR role" in how I introduced him to others. He said people would make judgments and assumptions about my son's genetic condition, so I had to script a story that played up all of his strengths and minimized any impacts the syndrome might have on his health or development.

This didn't seem like a bad idea, initially. I was over the moon in love with my son. I expected others to see him the way I did: as a tiny Buddha, whose smiles were bookended with dimples, a baby who loved to babble, grasp medical residents' fingers, and listen to books about Elmo and exotic animals.

The only problem with this selective crafting of our story was that it made me feel a bit like I was wearing a mask. I brushed off concerns about my son's genetic deletion by saying "it just means his ears stick out. The worst-case scenario is that he might have a mild learning disability."

This was, in fact, the sanitized version of his syndrome that I received from the geneticist who diagnosed him, minus a couple of pieces of information (that he might have problems with bony growths and hearing, and that 75 per cent of these children had mild to moderate delays). Some of the information, like the stat about delays, I didn't understand. I didn't ask for clarification on the term—which I now know means intellectual disability—and no one offered it. Instead, I grabbed the vague descriptor like it was a Get Out Of Jail Free card.

I was meticulous with language. I didn't use the word "syndrome," which in my mind was associated with intellectual disability. In fact, for the first year or two, I didn't even consider my son to have a disability. When my sister-in-law suggested we might apply for some funding for kids with special needs due to his low muscle tone, I proclaimed: "But he DOESN'T have a disability!"

We'd been told that because his genetic condition was so rare, we couldn't predict how it would affect our son. So I was his spinmaster, weaving a narrative about his life that I felt was most likely to win acceptance with others and calm my own fears.

The problem with this "heavily edited" approach to disability is that it delays thinking about and coming to terms with differences and how they're viewed in our culture. It delays thinking about your own values as a parent and how difference fits with those values. It delays having to trash a bunch of simplistic platitudes you may have been raised on, like: "If you just try hard enough, anything is possible." It also creates an atmosphere of shame, of the need for secrets. If your story ever slips, what does it mean for your child's value? Or your own?

In short, writing and religiously promoting a story that denies or "airbrushes" out the challenging parts of a child's complicated condition stifles your own emotional growth as a parent and puts tremendous pressure on a child. It weakens our humanity, which I believe is based on an understanding that human life is full of fragility and vulnerability and ambiguity.

So whenever I hear parents of kids with disabilities or people with disabilities up in arms over what "can" or "can't" be said about disability I get uncomfortable.

The most recent instance was triggered by this piece by Autism Speaks' co-founder Suzanne Wright, whose grandson has autism. She wrote it as a kick-off to the organization's summit in Washington calling for a national plan to address autism, which she refers to as a crisis. She depicts autism at one end of the spectrum, describing children "unable to dress, or eat independently, unable to use the toilet, unable to cross the street, unable to judge danger or the temperature, unable to pick up the phone and call for help."

That is a reality for many people with autism and their families. There is no shame in that reality.

Hundreds of people responded to Wright's piece, many adults with autism and parents of kids with autism. Much of the feedback can be summarized in this response from an adult with autism: "Why do you make us out to be monsters? Why do you insist parents be devastated by their child's existence?"

My son doesn't have autism, but because of his lack of speech and intellectual and physical disability he needs to be supervised. He can't go out on his own, he can't make a phone call, and he sometimes needs help with personal care.

He is dependent in a Western culture that abhors dependency and idolizes individualism and self-sufficiency.

I don't believe this particular piece by Suzanne Wright strips people with autism of their value.

I do believe our culture does that quite handily, and not just with people with autism, but with any person who's not independent, anyone with a visible mark of vulnerability. You see this in our treatment of the elderly and of people with a variety of developmental and physical differences over the lifespan. You see it in our society's treatment of people with dementia.

You even see it in the awkward way that we treat people with cancer who aren't able to "conquer" it. Meanwhile, there's a massive industry catering to our collective delusion that we're not aging and creeping closer to death.

I'm aware of the many criticisms of Autism Speaks: that it doesn't have people with autism on its board; that its marketing efforts have often positioned autism as something that we need to stand in opposition to, rather than as an integral part of a person; that not enough of its funding goes to innovative supports for people living with autism.

I think those are valid.

But when a family member of a child with disability is censored in their description of their family's experience with it, I find that problematic.

Perhaps that's why this post by my friend Meriah at With A Little Moxie got under my skin. She begins by saying she's "deeply disturbed by parent bloggers writing...their particular spin on 'special needs.' On disability." (Meriah has a disability herself and is raising a child with a disability)

Meriah argues that too often we parent bloggers give mainstream readers what they "want" to hear: "They yearn for—they crave!"—she writes, "the stories of how you are so jealous of them. How life is harder for you. How challenging it is to care for your child with a disability. You throw them some fodder for some inspirational porn and they'll swallow it with one gulp."

Really? That hasn't been my experience. My experience writing about raising a child with disabilities is that most people outside the disability community would rather not hear anything about disability. That silencing is a form of our children's marginalization.

In large part, kids with disability, especially severe disability, don't exist in popular media. They're rendered invisible, and that's how most people like it. Or they're seen as a tiny "anomaly" in the child and family landscape, so foreign that parenting magazines don't routinely include them in generic photo shoots and conferences for parent bloggers run a separate stream for "special-needs parenting."

And if North American readers want to hear anything, they "want" to hear that we've made tremendous strides in mainstreaming and acceptance and that discrimination against disability is a thing of the past. They love any opportunity to pat themselves on the back.

Meriah goes on to tell us that as blogger we need to make a choice. Which do we care about more?

Sharing "a story that ultimately perpetuates the myth that disability...is this awful, fearsome, pitiable, to-be-avoided-at-all-costs thing?"

Or sharing a story that will help to weave "rich new fabric that those of us who believe in the independent living movement are struggling to weave?"

Is our experience with our kids really that black and white? Is any aspect of life, disability or not?

Meriah advises parents who are struggling with their child's disability to seek comfort in parent support groups, but not to write publicly about it. In one of her comments she says that the kind of writing we should avoid (read censor) falls into the "woe is me" approach.

Instead, when writing about disability, we should "do so with an eye on social justice and social change," which I assume means editing our stories in the hopes that these "mainstream-friendly" versions will change people's perceptions of what disability is.

To me, this sounds too much like the PR that psychiatrist advised me to undertake years ago on behalf of my infant son.

And it reminds me of how BLOOM readers sometimes respond to studies we report on that suggest disability creates extraordinary, sometimes damaging, stresses on parents and siblings. They will check off "Not helpful" in the comment box at the bottom of the post.

Which always makes me wonder: Do they expect us to burn studies that don't report the findings we "want" to hear? Would that be more helpful?

For me, being real and as truthful as possible, is always the route to go. It doesn't mean you don't strive for balance. But you don't set out to delete things—including experiences that speak to our own weaknesses as parents—that you "wish" weren't true.

Which brings me to Ellen Seidman's post on Love That Max today. Ellen struggles with the grief she still feels over her memories of discovering that her newborn son Max had suffered a stroke. Implicit in her writing is the idea that now, as he's about to turn 11, she should just "get it together" and let the grief go, expunge it, move on.

It's a pain that flairs up annually, just before her son's birthday, she says. Last year she thought about returning to the NICU to try to recreate (read "edit") her experience of it. "Surely that could help exorcise the grief demons," she writes. "I had fantasies about sneaking in to the NICU."

Fortunately, (I think!), Ellen doesn't make the pilgrimage back to the NICU. Instead, she writes: "The grief, I suspect, will always be a part of me. I need to quit struggling with why it's still there. It says nothing about my life now, my motherhood or my love for this boy, who is the best therapy of all."

I think most people—including those who know zip about disability— can understand that kind of human ambiguity.

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In autism, we confuse IQ with happiness

Does being smarter make you happier? Not necessarily, says Dr. Evdokia Anagnostou, a child neurologist and clinician scientist in the Autism Research Centre at Holland Bloorview.
 
In the general population intelligence predicts school success, which correlates with “getting a university degree and money, our two obsessions,” Dr. Anagnostou says. “But IQ doesn’t predict how good life is, the quality of your life, or life satisfaction.”

And this is particularly true among people with autism, she says. “Parents are really focused when their child is diagnosed on figuring out the child’s IQ, because of the assumption that kids with autism and high IQs are doing better. And while they do have the potential to integrate better or easier or with less intervention, it’s a potential. In practice, there are many issues that make that original assumption wrong."

One is the high rate of anxiety and depression in children with high-functioning autism.  "If you look at the old category of Asperger's, up to 80 per cent of those children will have a significant anxiety disorder by the time they reach adulthood," Dr. Anagnostou says. "Up to 70 per cent will have one major depression as young adults, and 50 per cent will have more than one depressive episode. One in five will have obsessive compulsive disorder. There is significant mental-health co-morbidity for higher-functioning kids, so the term ‘functioning’ becomes tricky."

Dr. Anagnostou says there may be a genetic predisposition to mental-health problems in this group, "but some of it has to do with people realizing and being very aware of their difference and their inability to fit in and their limitations."

This often plays out in the workplace. Dr. Anagnostou notes that many adults with autism who are university grads are unemployed. "If you think about what makes you successful in a job interview, it's not necessarily your IQ, it's your ability to interpret social clues, to be socially savvy. A lot of very high-IQ people with autism fail at those things and so their technical intellectual ability is not translated into functional skill. We don’t have workplaces that will tolerate and accommodate and capitalize on the strengths of people with autism. There are also huge problems with anxiety and depression interfering with someone's ability to maintain a job."

Mental-health issues tend to spike after puberty and worsen after age 18, when supports for students with autism wane, she says. "We make sure our kids who have the ability to do well get supported in high school and we accommodate them. But then we take that away when they get to college. Very few universities have programs for people with autism."

On the other hand, youth with autism and mild intellectual disability often “do very well,” Dr. Anagnostou says. “With supports they can finish school, learn vocational skills, get a job, and they tend to have less mental-health issues than the high-IQ group. They’re often happier. If you have a university degree and end up in a life-long volunteer position, which is what happens to a lot of young adults with autism and high IQs, the kid who had the lower IQ who has the job and can support himself has a better outcome.”

Dr. Anagnostou says a problem in the world of autism treatment—and the larger culture—is an overfocus on academic performance. "I think we need to revisit our outcome measures for early intervention programs. Right now we're reporting on IQ points gained, but IQ doesn't always predict function or quality of life. We need to know childhood predictors of quality of life in adulthood and those should be the targets of our intervention programs. If IQ is one of them, great, but so far IQ hasn't been predictive of quality of life in the autism population."

More attention in the early years should be placed on nurturing emotional regulation, social engagement, shared smiling, and social motivation, Dr. Anagnostou says.

Early detection and treatment of mental-health issues is important. Cognitive behavioural therapy has been shown to significantly reduce anxiety in children with autism. “There are a lot of efforts now to adapt programs,” Dr. Anagnostou says. “For example, the Facing Your Fears program at Holland Bloorview includes more visual information, more practice, less time spent on thinking things and more on doing things. Children spend a lot of time learning how to identify emotions, which is often hard for kids with autism; rating their emotions; and using plans to manage them.”

Another intervention area that gets overlooked is the wellbeing of parents and siblings. "There are high rates of depression and anxiety in parents of children with autism and we know that parental mental-health predicts childhood outcomes, whether you have autism or not,” Dr. Anagnostou says. “The amount of resilience parents have predicts the amount of meaningful support they can give. So some of our intervention needs to go toward maintaining family health—in parents and siblings, and of the family unit."

She also says better systems of support are needed for adults with autism. "You can't have quality of life in adulthood if you don't have systems to support people, if they lose them at age 18."

More study into factors that lead to happiness and life satisfaction in adults with autism are needed, Dr. Anagnostou says. “Smartness is not the only thing that matters in terms of how happy these kids grow up to be, or how meaningful their life is. There are many other things that predict how good a life is. In autism, IQ predicts zip.”

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How the suburbs swayed me

Last year Sue Robins wrote an anonymous BLOOM piece about her son's deteriorating school situation. "I see now that I felt I had to be anonymous because I feared the ramifications of speaking out for our son," she says. "I'm no longer fearful to use my voice to speak up." Here's an update on how things have gone since Sue's family moved 18 months ago to get her son into a more inclusive school. "While no situation is perfect, our crisis in 2012 reminded me to always listen to my gut—sometimes giving up and walking away is the best choice for our children." Thanks Sue! Louise
 
How the suburbs swayed me
By Sue Robins

I arrived in the suburbs kicking and screaming. Our family came in exile from a mature neighbourhood near the university. We had a gorgeous, flat-roofed 1960s home, with a walk-out basement and a wrap-around balcony. The river valley was down the street, and our chocolate Labrador retriever could frolic in the nearby farmland. We were 10 minutes to the hospital, where I worked, and close to the subway. On paper, this was one idyllic place. Except for one thing:  no nearby school would educate our son.

Our youngest son has Down syndrome, and the idea of inclusion and cognitive diversity is still foreign to schools that boast academic excellence, or those staffed with teachers nearing retirement, or the one where the principal told us:

"If I let one special needs in here, they will all want to come here."
Three local community schools would not educate my son because of his differences, offering instead what amounted to a reluctant babysitting service.  I knew in my heart that my boy could learn and excel and grow academically if he was taught in a way that he understood. 

My most strident inclusion friends say that you can make inclusion work anywhere. But after countless meetings with my son’s Grade 3 teacher and principals, and too many times being summoned to the principal’s office to pick up my weeping boy, we knew the little community school wasn’t working. 

For four years, we did everything we could to make it work: I volunteered and my husband sat on Parent Council as Treasurer. But our son's troubles and social isolation never went away. He was labeled a "behavior problem" and written off. One day, I couldn't bring myself to take him to school for another day of misery. I gave up. I pulled him out of that community school and he never went back.

This is where the suburbs entered my line of vision. We happened to be friends with a soccer dad who was the assistant principal in a distant suburban school.  The school was new, and already overflowing with kids. It was in a neighbourhood teeming with young families, about 20 minutes further out from our urban home. We met with the school leadership, who were progressive and enthusiastic about welcoming our son to the school. I felt the smallest flicker of hope. 

There’s always a rub. The new school has closed boundaries. So we had to sell the beloved home we'd lived in for a decade to move neighbourhoods. And that meant moving to the suburbs—very much against my will. The day we moved was bittersweet. We left quietly, and sadly, from a place that had never ever accepted our son.  A community that excludes one is not a community at all.

Reflecting back, I see that acceptance comes slowly. It has taken me a year-and-a-half, but I’ve finally come around to suburban living. Yes, it takes 40 minutes to get downtown, but as a freelance writer, how often do I go downtown, anyhow? I can walk to get my groceries, something I could never do in the old neighbourhood. Independent, boutique stores are popping up amongst the chains in the strip mall—including a bakery, pub, flower shop, kitchen store and Indian restaurant. There is a gorgeous new recreation centre that my son considers his second home. This somehow doesn’t seem too bad. 

The neighbourhood is surprisingly ethnically and socio-economically diverse.  The density out here is higher than it is in the core of the city—with apartments, townhomes and affordable single-family homes being built at a fast pace. I know the "mature neighbourhood" citizens hate us urban-sprawl types. I used to feel that same disdain for suburbanites too. But I like to say that there’s a reason we live here: for some, it is the affordable price for land and housing, and for others, like us, it is because of the quality of the schools.
 
While I lost the status of a more prestigious neighbourhood, and a bigger home, our son gained so much more. We now walk across the street to school every day. He has teachers that believe he can learn, and his reading levels have taken a considerable jump. The leadership team treats our family with respect, and communications from the school are balanced and positive. Our boy still receives few play-date and birthday-party invitations, but in school, he is included and treated with warmth and dignity. Most importantly, he is valued in that school, where he spends seven hours of his day. I’ve seen his confidence rise as the teachers and his assistant nurture his independence, and demonstrate to him that he has worth.
 
And that means a lot more than a big old house in a leafy neighbourhood, doesn’t it? (Yes it does, dear readers. Yes it does). 

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Meet Arthur Fleischmann

Arthur Fleischmann, author of Carly's Voice: Breaking Through Autism, tracks the remarkable journey of his daughter Carly, who has autism and was unreachable till she typed a message on a computer at age 10.

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Our kids in the media

When I walked into Kumon today with my boys, I was thrilled to see a pile of ParentsCanada magazines on the table with a cover photo of this adorable toddler, Hudson.

I looked inside, and was referred to page 8 for more on Hudson. 

There we learn how a photographer suggested him as a model and the editors thought "it would be nice to feature a child with Down syndrome on our November issue."

Why was it necessary to specify that Hudson had Down syndrome? 

It's phenomenal that this little guy is on the cover of the magazine, but why couldn't he be included as simply part of the vast "kid" landscape, which he is, rather than being "identified" as having a syndrome? Why couldn't he just be Hudson, with a descriptor about his personality or what he likes?

Would we expect to see a descriptor of a cover model like this: 

"We thought it would be nice to include an African American child on this issue."

or

"We thought it would be nice to include a child who wears glasses on this issue."

The fact of the matter is that there was no "story" inside about Down syndrome, so that part of his identity was immaterial to the photo description.

How about:

"We thought it would be nice to include a child with their arm in a cast on this issue."

or

"We thought it would be nice to include a child whose mother is an atheist on this issue.

None of this information is relevant to the pic of a gorgeous kid on the front of the magazine.

I think we'll have come a long way when magazines include stand-alone photos of children with disabilities as simply being who they are -- children!

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Who decides what's beautiful?

Carly Fleischmann, a University of Toronto student with autism and a prominent disability advocate, has launched a brilliant Facebook campaign calling for a COVERGIRL model with autism.

Carly is a teenager who was unreachable until she typed a message on a computer at age 10. Her story's been covered widely in mainstream media and she co-authored Carly's Voice: Breaking Through Autism with her dad Arthur.

Now Carly is asking: "Why can't we all be cover girls?"

On its Facebook page, COVERGIRL says it's "an advocate of women rocking their own kind of beautiful."

I'd like to see examples of that in its advertising. 

Carly's campaign is timely because tonight we have New York fashion photographer Rick Guidotti talking about his own quest to redefine beauty at a BLOOM speaker event.

Rick has worked all over the world shooting for companies like L'Oreal, Revlon and Yves Saint Laurent.

But he left that industry to travel the world capturing images of children we don't usually get to see in popular media: those with genetic conditions. 

Children who look different in this way are typically rendered invisible in our culture. You don't see them in mainstream advertising or as part of the parenting magazine landscape.

"In fashion I was always frustrated...because I was always told who I had to photograph," Rick says. "I was always told who was beautiful."

Rick's non-profit Positive Exposure "gives people permission to see beauty and interpret beauty in their own right," he says. "These kids are gorgeous, we're just not allowed to see it."

I love that two trailblazers—Carly and Rick—are asking us to open our eyes to the idea that we choose to see beauty. It's a choice!

And in other news touching on beauty and disability, special-needs bloggers were quick to demand Sephora withdraw a new lipstick its promoting called Celebutard. The Kat Von D lipstick combines the words 'celebrity' and 'retard.' The company says it's pulled the product (although it still appears on the Sephora website).

Enough said.

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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.

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