Thursday, July 31, 2014

Peer-led groups treat distress in moms of kids with autism

By Louise Kinross

Parent-led groups in mindfulness meditation and positive psychology significantly reduce stress, depression and anxiety in mothers of kids with developmental disabilities like autism, according to a July 21 study in Pediatrics.

Two-hundred and forty-three mothers—65 per cent with children with autism and the rest with other developmental disabilities—were randomized into either a Mindfulness-Based Stress Reduction group using breathing exercises or a positive psychology group that focuses on cognitive exercises like curbing negative thoughts and practising gratitude.

Six weekly, 90-minute sessions were run by mothers of children with disabilities. They received four months of training and were supervised.

At baseline, 85 per cent of participants had significantly high stress, almost half were clinically depressed and 41 per cent had anxiety disorders.

Both treatments led to significant reductions in stress, depression and anxiety and improved sleep and life satisfaction. The drops in depression and anxiety were large. Mothers in the mindfulness group had greater improvements than those in the positive psychology group. Only one treatment difference was seen in the disability groups: Mothers of children with autism improved less in anxiety. Mothers continued to improve or maintain gains during a six-month follow-up.

Researchers suggest that further research should look at groups that incorporate aspects of both mindfulness and positive psychology.

“Our research and findings from others labs indicate that many mothers of children with disabilities have a blunted cortisol response, indicative of chronic stress,” says lead investigator Elizabeth Dykens, director of the Vanderbilt Kennedy Center for Research on Human Development and professor of psychology. They also have reduced immune function and shorter telomeres—the protective cap on the ends of strands of DNA—which indicates speeded up cellular aging.

“Compared with mothers of typically developing children, mothers of children with neurodevelopmental disabilities experience more stress, psychiatric problems and poorer health,” the researchers say. Although the “cumulative stress and disease burden of these mothers is exceptionally high…policies and practices primarily serve the identified child with disabilities.”

The researchers call for more research on how trained peer mentors can work with professionals to address unmet mental health needs of mothers of children with developmental disabilities.

Wednesday, July 30, 2014

Gabrielle steals the show

By Megan Jones

Gabrielle Marion-Rivard doesn’t enter a room. She arrives. Underneath her thick mop of curly brown hair the actress’s eyes and her smile widen. She radiates.

“It’s her magical light,” says Canadian film director Louise Archambault. “She has that presence on screen and that magic in her eyes. It’s rare.”

The two women met several years ago at
Les Muses in Montreal, an organization that offers performing arts classes to people with disabilities. At the time, Gabrielle was a student and Louise was researching a film she’d written about a young woman with a disability entering adulthood.

Gabrielle has Williams syndrome, a genetic disorder associated with intellectual disability, heart problems and certain facial features. Those with Williams syndrome are often also extremely sociable, with an affinity for language and music. Gabrielle is no exception.

She eventually secured the lead role in Louise’s film—
Gabriellewhich Louise named after her and released in 2013.

In it, she plays a young woman with Williams syndrome by the same name who is also a talented singer. Her character joins a recreational choir for adults with disabilities, where she meets, falls for, and starts dating another choir member, Martin—played by Alexandre Landry, who doesn’t have a disability in real life. On-screen, the two are inseparable, but as a result of their disabilities, their families are skeptical and cautious about their romance. Gabrielle is the story of a young woman with a disability fighting for independence, and the challenges and prejudices she faces. This year, the film won two Canadian screen awards for Best Film and Best Actress.

While Louise says the choice to cast Gabrielle in the title role was clear in hindsight, when they first met neither of them was sure if she could handle the part. Gabrielle had trained as a singer, not an actress. But the two were determined, and worked together for nearly a year in acting and improvisation workshops.

“The producers and I came to the conclusion that a professional actress probably wouldn’t have the same authenticity and spontaneity,” Louise says. “The role was hers.”

Gabrielle says she still remembers the day she got the part. “One day Louise called my house and asked me if I wanted to be in her film,” she says. “I was so very happy, so very excited. I said, ‘Hooray!’”

Louise had already written her script when she first attended Les Muses, but her experiences with Gabrielle and other students at Les Muses inspired her to rewrite parts. She also hired a number of actors with disabilities she met there.

On many occasions, Louise says the cast defied her preconceptions. During shooting, for example, a personal support worker was hired to help out on set in the event that any of the actors with disabilities became stressed or agitated. Louise says that while the first three days were challenging, once a routine was established, filming went smoothly. At one point a few weeks in, the support worker approached Louise and asked if she could go home. There was nothing to do and she was bored. 

The director says that working with a cast of actors with disabilities taught her to reimagine her expectations and think on her feet.

“I accepted that neither their acting nor their approach to the work was going to be perfect,” she says. “I had to let go so that the truth of their actions and reactions could surface.” 

At the same time, the actors presented some challenges that Louise wasn’t used to, she says, and she learned to adapt her set accordingly. Many cast members, for example, wanted to look directly into the camera—which gives footage an unrealistic feel when it’s played back. Rather than insist that the actors look away, the crew moved the cameras around frequently and captured long takes of each scene so they could pull the best material during editing. 

Louise also took advantage of spontaneity. “If there were two characters off in their own world whispering, that was something special. I would try to grab that for the film,” she says.

For Gabrielle, the challenges were different. The hardest part of filming?

Oh my gosh. The love scenes,” she says.

“I’d never actually been in love in real life. I’d never actually been to a sex-ed class. I didn’t even know what a sex-ed class was!”

Sometimes she also had trouble with coordination on set. The scenes that required her to pick up objects in a certain order had to be shot multiple times. As she practised though, her coordination improved.

Gabrielle says that playing the lead role in the film taught her that she has a lot more autonomy than she imagined. She says this realization helped to boost her self-esteem. “I learned to accept my syndrome,” she says. “Before, I didn’t. But I learned that I’m capable of acting in a film that I was really proud of.”   

Today, the actress hopes to live in her own apartment eventually, like her character did. But for now, she continues at home with her mom.

For Gabrielle, working with other actors with disabilities was important, and she’s glad that Louise chose to cast those with real disabilities in as many roles as possible.

“They really understand the challenges their characters will face,” Gabrielle says. “And also it shows people what I can do despite my disability.” 

The actress hopes that the authenticity of the movie will remind a wide audience that young adults with disabilities also have goals and dreams, and that they are striving for love and independence, just like anyone else.

In particular, she encourages the parents of kids with disabilities who watch the film to keep these things in mind as their children transition into adulthood.

“They need to accept their children and encourage them to accomplish their dreams,” she says. “Let go. Believe in us.”

Monday, July 21, 2014

Never alone

By David M. Perry

Minutes after my son Nico was born, as he lay on the warming table, I noticed his eye was having difficulty opening. I asked Michelle, our nurse-midwife, if there was anything wrong. 

"No, his eye is fine," she replied, "but did you have any genetic testing done?" 

“No,” I said. This was true, not because of any philosophical plan, but because for various reasons we didn't know my wife Shannon was pregnant until we had moved past a lot of the test dates. The ultrasounds showed no troubles, anyway.  

Well,” she said, “he’s showing characteristics typical of Down syndrome.” 

My mind reeled, racing through images of people with Down syndrome. The word “retarded” flashed by. I immediately started imagining our life and wondered, “Does that mean we’re going to have to put him in an institution?” Later, my wife told me that her first thought on hearing the news was concern about his life expectancy. 

This was the moment, the birth of our first child, that should have been filled with elation. We had planned for it, dreamed of it, waited for it. But the words “Down syndrome” were so powerful and so negative that our minds turned instantly to institutionalization and death.

“What does that mean?” I asked Michelle. 

Michelle answered my question in the best possible way. She said that there was a big range of possibility, some risk factors, and also the strong likelihood of significant delays. I did not process this answer, not really.

“Should I tell Shannon?” I asked? Yes, Michelle said, I could.

Through classes and talking to doctors, Shannon and I both knew how things were supposed to go. After the baby is born, they clean him and wrap him and weigh him and make sure there’s no danger, then they give him to his mother. There are so many pictures and images of that perfect smiling moment: exhausted, the new parent and new person cling to each other. The baby, having taken his first breath, issues his first wail, a protest at having been extricated from the perfect home that is the womb. Nico was silent. Nico was not being placed on Shannon, and she sensed something was wrong. 

“Where is my baby?” Shannon cried. “Is he ok?” I mumbled something. “Is he ok?” she repeated. “He’s fine,” I said, “But Michelle thinks he has Down syndrome.” The words tumbled out of my mouth in a painful rush.

It was the first time that I said that my son has Down syndrome. I’ve said it so many thousands of times since, the meaning shifting as my understanding changed, from something that seemed so terrible to just a complicating fact, a fact intricately linked to the identity of my wonderful son. 

We have a picture of that moment, a moment when we first held our baby. I’m not sharing it. We do not look happy. But sometimes, I look at it, thinking back to those moments in order to see how far we’ve come.

The next few hours were not easy. We got to hold him, for what seemed like seconds, before they whisked him off to the special nursery. There was a phone call to my parents. There was a locked post on livejournal explaining our situation, to which I didn't permit comments. There were tears and anger and stages of grief. 

And then two things happened. First, I got to spend time with my son. He was covered with wires and tubes, but he was real, tangible. There was work to do. Here was a child who needed care. The presence of my son booted me from abstract to real. 

Then our community of friends and family, who had spent the hours since my late-night post learning about Down syndrome, kicked into gear. In those first bitter hours, among the more trivial of my dark thoughts was that the man we had asked to be Nico’s godfather wouldn’t want to be involved with Down syndrome. Perhaps I should let him off the hook, I thought. I felt ashamed of my son, of myself, of my thoughts. I wanted to hide. But our friends, including Nico’s godfather, were up to the task.

When they talked to me on the phone, when they came to see us, they said what you would say to any new parent: “Congratulations!” 

“Stop it,” I wanted to shout, “there’s nothing to congratulate us about! This is a tragedy. Lives are ruined.” 

But they were wiser, and stubborn, and just kept congratulating us. They came to visit laden with flowers and champagne and chocolate cake and presents. They showered us all with love. They told us our baby was beautiful and cooed over him. Together, my son and my friends carried me out of the first shock of grief. They shifted my perception so that I didn't see just a bundle of symptoms and potential problems, didn't just see a diagnosis, but instead saw my wonderful boy.  

By the end of the second day, Nicholas successfully latched onto his mother’s breast and nursed. We’d been told he probably wouldn't be able to nurse, that his jaw would be too weak, that he might need a direct tube in his stomach, or to be fed via a tube inserted down his nose, and all sorts of other things. But he nursed. And for the next four days, we’d be back in his room every three hours, providing a kind of rhythm to a life that so quickly became our normality. 

We transitioned from mourning to the joys of parenting thanks to the presence of a real boy for whom we could care and love, while being surrounded by a community that rallied around us so marvelously and so stubbornly. I’m still grateful, because those joys are immense.

But when I think back to that moment when my son was born and I heard the words “Down syndrome,” there was only grief. Fear. Ignorance. I was incapable of rational thought.  

Imagine being given that news over the phone in week 16 of a pregnancy. 

In the prenatal context, there’s no child to care for, to love, to nurture, and to see as something real. There’s no child around which the community can gather, praise, tickle, focus on. There’s just this diagnosis and a shape on an ultrasound machine. That shame we initially felt in the hospital, the desire to hide, was only countered by our friends showing up at the hospital with their powerful words and love.  

Absent powerful support structures—spouses, family, friends, faith, whatever it takes—how is someone supposed to get through that?

This is why community, correct information, and representation matter so much. It’s why we need to change the meaning of "Down syndrome" from something that's filled with fear and grief to something filled with the possibility of joy.

Sometimes people ask me what we would have done with a prenatal diagnosis of Down syndrome. I tell them that I can't answer that question. There’s no way for me to put my mind back into the state of ignorant abstraction prior to meeting Nico. Statistics suggest that I might have advocated for an abortion. Then again, we would have been alone, without community, without concrete knowledge of what life with Down syndrome is really like, good and bad. 

That's the goal of the work of so many writers, organizers, and activists—to let people know that we aren't alone, that the birth of a child with Down syndrome may come with a long list of worries, but also deserves congratulations, and can lead to a laughing boy sliding down a waterslide into the waiting arms of his sister (or whatever your life may bring). 

There are no guarantees in life, no matter how many chromosomes you have. We'll have many more obstacles to face. Some will make us weep, surely. And yet, we won't be alone. 

David M. Perry is a professor of history at Dominican University who writes about disability and related topics on his blog How Did We Get Into This Mess? His essays have appeared on CNN, The Atlantic, and The Nation. Follow him on Twitter @Lollardfish.

Monday, July 14, 2014


Here are Ben and D'Arcy on Lake Ontario at Cherry Beach.

But there was another boat Ben was more interested in.

Wednesday, July 9, 2014

Watching the shadows

By Louise Kinross

I found something that my son and I love to do.

It involves going for a leisurely walk up to our local shops. We stop at a number of benches along the way to rest and watch the people go by.

In the past my son wouldn't do this walk because of pain in his legs and the trip is still a major exertion for him.

But on the weekend I convinced him to do it twice on days with a cool breeze, and we spent a couple of hours out every time.

He likes a gem shop and asks me to say the names of each of the stones on display. Quartz is his favourite and this last time he bought a small clear globe which the cashier put in a tiny brown bag.

Then we went to the book shop, where he can easily spend an hour moving his favourite chair progressively down one aisle as he peruses the books. He loves the Tintin series so we bought The Shooting Star for his camping trip.

We frequent this store regularly and know the staff so I feel comfortable that they understand and tolerate his differences, including some of the sounds he makes as a non-speaker. I can leave him to look for my own books.

After a very long session we decided to leave. I told him I was putting a magazine back at the front of the store and left him sitting at the back. When I came back he was gone.

My first feeling was happiness: he must have gone out the back door himself! In the past he wouldn't have had the strength to push open this door and he wouldn't have even tried. He would have waited for me. 

Then, mild panic.

I darted out and saw him sitting on a bench tapping a man's arm and gesturing that he wanted to show him what he had in his brown paper bag.

"Ben!" I called. "What are you doing?"

I sat down beside him and said: "Do you want to show this man what you bought?"

He nodded yes, opened the bag and unwrapped the tissue paper to reveal the small clear globe. The man, who was a bit odd himself, smiled.

I was happy that he wanted to connect with someone but afraid of his vulnerability. I later mentioned that you had to be careful who you sat with or approached because some people were bad.

I couldn't imagine him ever being able to do the walk on his own, but, nevertheless, I pointed out all of the street names to him and he certainly knows the route.

He was delighted when the sun came out and he could watch his shadow walking beside him.

At first I couldn't understand what he was gesturing to on the ground. Both of our shadows were right there, clear as day, but I couldn't "see" them. I guess shadows no longer register with me as natural wonders worthy of observation and enjoyment. After much enthusiastic pointing, I finally got it.

"Oh, the shadows! Your shadow. Yes, there it is. Very cool." I took the time to really look at how his shadow followed him.

We stopped to sit on a bench on the way home. There was a pleasant wind to cool us and nothing to do but watch the endless stream of people go by. It seemed like we could sit there, he and I, forever.

Thursday, July 3, 2014

When language fails

By Louise Kinross

I was trying to explain to my therapist how having a child who didn't speak had let me off the hook in terms of answering tough questions about his disability.

I was expressing concern about my son's future as an adult, but feeling stuck in terms of how to discuss it with him.

While I had talked a lot about how his disability affected him when he was little, I hadn't in recent years spelled out clearly that he wouldn't be able to drive, or live alone, or do some of the things he'd identified as dreams in his Life Plan day a couple of years ago.

When he was little we talked regularly about his Langer-Giedion Syndrome, but we hadn't done so recently.

In fact, when I thought about it, I didn't clearly identify him as having disabilities in everyday conversation. I hadn't talked openly about disability and asked him how it made him feel.

I had taken advantage of the fact that he couldn't pester me with questions like a speaking child. A part of me felt that he saw himself as different, but not disabled, and I didn't want to hurt his self-esteem. I knew I was supposed to be nurturing a self-advocate, but our communication barrier, and the sadness in my heart, got in the way.

When he was little, we talked about disability in terms of how it affected him functionally: he didn't grow like other kids/"good things come in small packages;" he needed hearing aids to hear; he knew what he wanted to say, but his muscles wouldn't listen to him; he needed physio to help him learn how to walk; other people speak, but he would talk with his hands or a machine; he grew bumpy pieces of bone on different parts of his body but they weren't usually a problem. And if they were, they could be removed.

I'd always had an explanation for his random genetic condition ready, but I'd never used it (in fact, when I think about it, I've only ever shared it with one of my daughters, when she asked for a more sophisticated answer).

The plan was to explain that everyone has genes that are like letters of the alphabet. The letters are put together in words and sentences that give your body instructions on how to take care of itself. But in my son's case, he was missing two genes, or letters. He had a deletion on the long arm of Chromosome 8. This meant that some of the instructions to the body got jumbled. There wasn't any reason that he had this condition and the rest of us didn't. It was a random error (I'd have to work on the language there). Just something that happened at conception. It wasn't fair. It wasn't just.

I was trotting out this explanation dispassionately with my therapist when I surprised myself by breaking down. "I don't want to tell him that he's missing something," I said, sobbing at the word 'missing.' "I don't want to tell him that everyone else has these letters and he doesn't."

What followed was a discussion about how it was important that I talk more openly about his disabilities and how they would shape his life options.

"He knows he has a disability," she said, "but it can provide a great deal of relief when someone's condition is explained in detail to them." 

And then, she said, I would be able to list all of the amazing qualities that make up my son, the things that seem bigger to us than what is missing.

So I told my son last night that before he went on the iPad we were having a talk. I got out a piece of paper and wrote Langer-Giedion Syndrome on it.

Do you know what that is, I asked?

Yes, he nodded.

It's the genetic condition you have. 

I jotted down a few of the symptoms: hard of hearing, bumpy bones, you don't speak, your muscles are weak. I ran my hand over a large bony growth that had appeared on his leg in the last year. Your bones are bumpy, but usually they don't cause a problem, I said. And if they do they can be surgically removed.

He gasped and pretended to hyperventilate, his way of telling me that he hates hospitals and operations.

We went through the other symptoms.

Your body has lots of genes, I said. Genes are like letters, the ABCs. When you put them together they spell words that tell your body how to take care of itself.

Two of your genes aren't working properly (in the moment I managed to avoid the 'missing' word). So sometimes your body doesn't get the right messages and it causes problems.

How does it make you feel that you have disabilities?

He looked at me but didn't respond. My son's attention for this topic had reached its limit.

It must be very frustrating, I said. And it probably makes you feel mad sometimes. And sad.

To my great surprise, my son started laughing. He'd just been watching a Jackie Chan Adventures cartoon with his brother, and I can only imagine that his mind had moved on from our serious and dry genetic discussion to the lighter fare of the silly cartoon caper.

I began to write out the list of my son's amazing qualities: Funny. Kind. Caring. Curious. Sensitive. A good friend. Smart. Gentle. Courageous.

I read them out loud.

So even though you have Langer-Giedion Syndrome, you have all of these other things, I said.

It's a small start, I told myself. But an important one. Next on the agenda: a talk about the future.