Wednesday, July 25, 2012
Tuesday, July 24, 2012
Study of tri 13, 18 finds joy in short lives
A Pediatrics study of 322 parents who chose not to terminate children with trisomy 13 and 18 finds that while most were initially told their child was 'incompatible with life' and would suffer, 97 per cent later described their child as happy, despite severe disabilities, and enriching their families, even when their lives were short.
A good summary appears in this piece in Science Daily:
Children with trisomy 13 or 18, who are for the most part severely disabled and have a very short life expectancy, and their families lead a life that is happy and rewarding overall, contrary to the usually gloomy predictions made by the medical community at the time of diagnosis, according to a study of parents who are members of support groups published July 23 in Pediatrics.
And here on Medline Plus.
The study was co-authored by two neonatologists and parent Barb Farlow (in photo with daughter Annie, who had trisomy 13, above).
A blog by Montreal neonatologist Dr. Keith Barrington comments on the study and offers these suggestions to health professionals working with families:
1. Don’t say that this is ‘incompatible with life’ or ‘lethal;' anyone can go on the internet and find very quickly that you lied to them.
2. Don’t say that if they survive ‘they will live a life of suffering.' Parents do think that their child had more pain than others, but they also had many positive times, and their overall evaluation was positive.
3. Human beings are not vegetables. These children are conscious and interact, even if at very limited levels. Carrots don’t.
4. Don’t predict marital disharmony, or family breakdown. You can’t see the future, there is no evidence at all that this occurs more when a family has a baby with severe impairments, and indeed in this admittedly biased sample the divorce rate was far lower than the US or Canadian average.
4. Families find meaning in the lives of their children. Whether those lives are unimpaired or lived with severe impairments. Whether they are very short or not.
5. Don’t suggest that the child is replaceable. Sometimes parents will bring up the idea that they can have another child, that is fine if they do so, but for you to suggest it really shows that you think this child is worthless.
6. Don’t say that there is nothing you can do for them. There is a lot you can do. Empathy and a positive attitude can be a great help. Finding resources, respite care, enabling appropriate medical care, these are all things that you can do for them.
7. Be very explicit about medical decision making, come to an agreement about the limits of medical interventions (if you can’t, then find them another doctor who can); and be open to changing the plan as time goes on.
8. Refer to the child by name if there is a name. (Annie has often recounted to me that when she sees parents antenatally with a serious diagnosis she will ask them what the baby’s name is. They often become teary and tell her it is the first time anyone has recognized their fetus as being a real potential human being...)
9. Above all recognize that these babies are human beings who will be loved, who will be cared for, who will leave a positive mark on their families, and who deserve respect.
Sunday, July 22, 2012
Where friendship is the highest good
We'd just met that afternoon. But when I asked Olivier Caupin if we could have our picture taken, we embraced naturally like old pals. Just before the photo was taken, Olivier placed his head gently but purposefully on my shoulder.
"You are accepted," his gesture seemed to say.
It was the first of many surprises during my visit to L'Arche (The Ark) in Trosly-Breuil, France -- the birthplace of a community that brings together adults with intellectual disabilities and young adult volunteers known as assistants. The model, conceived by humanist, philosopher and theologian Jean Vanier, now operates in 40 countries.
Olivier was our official tour guide of the first L'Arche community created in 1964. It includes six homes, numerous workshops and greenhouses, a pizzeria and two stores where residents sell handmade soaps, mosaics and candles and homegrown fruit and vegetables.
Trosly-Breuil is a centuries-old village of white stone cottages with white shutters and beds of red roses, at the edge of the lush green Forest of Compeigne, about an hour north of Paris. L'Arche fits seamlessly here. Other than a small sign on the main office, there was nothing that set it apart as a place for people with disabilities.
"We propose to people with disabilities and every assistant to share the same life in the same homes and very simply," said Bénédicte Millet, a former speech therapist who heads a team of staff who support volunteers. Bénédicte, who has lived here for 21 years, spoke to me in English because I couldn't speak French. "We make a family atmosphere," she said.
Most important: "We take the time together to pay attention to everybody and to speak with everybody. To pay attention to those who never speak or who are sad. And to speak to those who are talking too much!"
That's what it was. Each person was acknowledged and valued. "It feels like a village," I said, referring not to it size but to its welcoming atmosphere.
"The message of L'Arche is that people with disabilities have something to teach us..." said Bénédicte. "They have the gift for relationships and we have to learn from them the ability of friendship and tenderness, not competition. We help everyone -- assistants and people with disabilities -- to grow in this capacity."
Olivier showed us around workshop number 2, where more than a dozen workers laboured over projects including small-scale assembly work and packaging of products. A few people were placing small metal pieces into trays of 30 slots to be used in the steering-wheel mechanism of cars. "My mother works at Channel," Olivier told us, explaining that this connection had led to a project packaging makeup. The workshop was part warehouse, with completed items stacked in boxes.
Olivier had a slight stutter and when his thoughts got stuck in production, he closed his eyes tight then blinked, as if willing the words to life. Because my French is so poor, my husband D'Arcy translated. Olivier shared the one phrase he knew in French and English: "Je t'aime. I love you."
Two young women approached and shook our hands warmly. One pointed to my hat. "Do you not have hair?" she asked in gestures. "Could you take off your hat?" I did and she opened her eyes wide and laughed. She didn't adhere to the social etiquette that would prompt someone to pretend they hadn't noticed my alopecia, which makes me different. Our culture's "addiction to the illusion of perfection," which author Ian Brown spoke about at a BLOOM talk, was noticeably absent at L'Arche.
Olivier took us outside and a tiny white dog trotted by. "Is that your dog?" I asked. "No!" Olivier exclaimed, pointing to a fine line that ran from his nostril to his lip and explaining he had been bitten by a dog as a child.
When asked about his favourite things, Olivier said: "Moi, j'adore le football." In addition to playing soccer, he said he liked swimming and horses, all activities he enjoyed at L'Arche.
We entered an art studio. People in smocks sat in a rectangle of facing tables placing small coloured tiles into elaborate mosaics of trees and people. One man was putting clay through a press. The scent of melted parrafin laced with fragrance wafted in from an adjoining room where candles were being made.
People were busy, focused and quiet. It wasn't immediately clear who had disabilities and who didn't. I had the sense that people wanted to be here -- unlike some programs where people with disabilities are cajoled into doing something they're not interested in.
Assistant Jean-Patrice Kroczek, a slight, middle-aged man with wire-rimmed glasses working on a mosaic, said he found work at L'Arche "very enriching."
Jean-Patrice told me he had lived and worked at L'Arche since 1976 -- 36 years! I was stunned, given popular values about work, success and climbing the corporate ladder, and asked why. "I've always liked being with people who are marginalized, because if it was me, I wouldn't want to be marginalized," he said. Jean-Patrice said people at L'Arche didn't "talk about handicapped people because we talk about working for everyone." Instead, he used the word "gifted" to describe the residents with disabilities. He said his time at L'Arche had taught him about personal relationships.
Hungarian Lilla Gyuris, 21, who came to volunteer last September, said she planned to stay another year. "It's very hard to explain what I've learned," she said. "I found life here. I found a family. And friends. When I arrived, I didn't know what to think. I thought (people with disabilities) weren't normal, but it's not true. Everyone is handicapped a little, and everyone is normal. I can't drive, that's my handicap. And when I came here I couldn't speak a word of French. That's a handicap."
The original L'Arche has grown over the years. Today, in each of nine homes in the village and surrounding area, seven people with disabilities live with a team of four to five assistants. One house serves people with physical and intellectual disabilities. While youth 18 and over have volunteered here from all over the world, candidates are now accepted only from Europe.
"Some assistants arrive with a lot of diplomas and are very intelligent, and others arrive with nothing, having had no success," Bénédicte said. "What we propose is the same for all: to clean the house, to buy and cook the food, to wash the plates after dinner, to make family life. For a lot of them, this is a new life. They're used to studying or eating alone and having their own life and suddenly we are all together and paying attention to everybody."
Six of the 10 assistants who began last September have chosen to stay a second year, Bénédicte said. After volunteering for a year, they will be paid. L'Arche is funded by the French government.
"When Jean Vanier started in 1964 there was nothing for (youth) with disabilities after age 14 or 15," Bénédicte said. "In 1960 a father of a young man with disabilities bought a home in Trosly to house 30 men aged 15 to 25. But it was run like military life with everyone getting up at the same time, going to sleep at the same time and walking two by two in Trosly in the street. There was no possibility for choosing what they wanted."
A priest who was disturbed by the home's regimented lifestyle asked Jean Vanier, then studying theology in Paris, to visit and assess the situation. Vanier "bought a small house in the village where he lived with two young men and was then asked to become the director," Bénédicte said. Over time, the project and its homes grew.
The idea was "to propose family life for the mentally handicapped and a place where they could choose what they wanted to do," Bénédicte said. Vanier, a professor of philosophy, called upon his university students from Canada, England and Paris to consider volunteering. "They were very interested in the project and many came. Social services observed the homes for two years and saw that with less money L'Arche was doing more than the other institutions. So they accepted L'Arche as an institution like the others and we receive money for everything."
While L'Arche is based on community life, residents who decide they want more independence have the opportunity to live, with support, in studio apartments in Compeigne, a nearby city. Bénédicte noted that two residents just got married and others choose to live as couples.
She said parents' expectations for their adult children often change once they see them blossom at L'Arche. "At the beginning, sometimes they want the child to become able to read and write, but more and more, they can understand that that is not the most important thing," she said. "When they see their child happy, with a lot of friends, and with a good life, a very interesting life," they are satisfied.
Thursday, July 19, 2012
Pushing forward
Story by: Megan Jones
Ideas unlimited
Scientist Tom Chau, head of the Bloorview Research Institute, discusses his latest work and the importance of innovation in the field of childhood disability. Tom recently received U of T’s Inventor of the Year award.
Story by: Megan Jones
Play about Down syndrome extended
Last Friday, I was lucky enough to see Judith Thompson’s play RARE staged in Toronto. It was equal parts hilarious and uplifting, moving and devastating. Through their stories, the actors’ voices and experiences came alive onstage. Photo by John Gundy.
-MeganRARE, a Toronto Fringe Festival play starring nine adult actors with Down syndrome, will return briefly to the stage in August. After being staged in July as a part of the regular Fringe Festival, the show has been selected as one of eight best-of-Fringe plays to run repeat performances.
In RARE, actors tell their real-life stories, sharing their fears, desires and perceptions of disability. No subjects are censored, with performers exploring topics like death, sexuality, and their simultaneous hatred of and pride in their own disabilities.
Cast members, like Dylan Harman, hope that the play’s frank discussions will prompt audiences to re-evaluate their treatment of individuals with developmental disabilities.
“I hope they will learn to speak to people with disabilities like adults,” he says. “Because we’re human too.”
For other cast members, the play functioned as a personal growing experience. Actress Krystal Nausbaum, who performed in the American film The Memory Keeper's Daughter, says that working in RARE was uniquely rewarding.
“It’s really different than other plays…,”she says. “I can relate to these stories.”
RARE will be staged August 1-3 at the Toronto Centre for the Arts. Tickets are available online through Ticketmaster, or at the centre’s box office.
Story by: Megan Jones
Story by: Megan Jones
Monday, July 16, 2012
In harm's way
Children with disabilities are nearly four times more likely to endure abuse than their non-disabled counterparts, concludes a study commissioned by the World Health Organisation (WHO). The study’s results were published on Friday in the Lancet.
According to the report, children with disabilities are 2.9 times more likely to experience sexual violence and 3.6 times more likely to endure physical violence than non-disabled children.
Kids with mental illnesses and intellectual disabilities are among the most vulnerable, facing a risk of sexual violence 4.6 times greater than their non-disabled peers. Difficulties with communication often increase the likelihood that children will not be listened to, understood or believed in the event that they report maltreatment.
The study also found that kids living in institutions face a higher risk of abuse than those who live in family homes.
The report is based on data from 17 different existing studies from high income countries like the United States, Sweden, Finland and Israel, among others. Overall, it reflects data from over 18,000 children. Of the children with disabilities studied, 27 per cent overall had experienced some type of violence, including physical or sexual abuse, and emotional neglect.
Researchers say the increased risk of violence results from the stigma, discrimination and lack of knowledge that surround disability. They also point to the dearth of social support for caregivers as a factor.
Those working on the study hope that by exposing and highlighting risk, the research will lead to better care practices and the implementation of more serious abuse prevention strategies for children with disabilities.
They also mention the need for research into abuse rates in mid-to-low-income countries, where rates of disability and chronic illness tend to be higher, and support services are few and far between. Currently, little to no data exists for these areas.
Story by: Megan Jones
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