By Megan Jones
Denise Clayton and her family are too familiar with hospitals: in fact, they’ve spent nine of the past 11 Christmases in one.
Denise’s middle daughter Stephanie (photo right) was born with omphalocele, a condition that causes abdominal organs to grow outside the body. Although a string of operations has long since put everything back in place, the 11-year-old has spent most of her life hospitalized.
Today Stephanie lives with intestinal failure and experiences debilitating chronic pain, which often becomes so intense that it causes her to yell and scream uncontrollably. The pain comes quickly, and with little warning: one minute Stephanie might be running and playing. The next, she’s doubled over.
The uncertainty caused by the slew of surgeries, constant hospital stays and sudden, crushing pain has been undeniably stressful for Stephanie. But, Denise points out, it has also taken its toll on a less-discussed set of family members: her other two daughters.
Sydney, 13 (centre), and Danielle, 9 (left), have learned from an early age how to care for their sister—and for themselves. Denise’s husband, Greg, often travels outside of the province for work. So when their mother has to unexpectedly rush Stephanie to the hospital, her other two children are left to take care of themselves.
“They never know when they come home if there’s going to be somebody there,” Denise says. “They don’t know who’s going to get them dinner; they don’t know who’s going to help them with their homework.”
For years, Denise’s family coped without outside support for Sydney and Danielle. Although Denise looked for sibling support, nearly all the respite and therapy services she found were designed for parents, or for the children living with an illness or disability themselves.
Then, finally, after almost a decade of searching, Denise found the Young Carers Program.
Young Carers, which launched in early 2011, offers support to children under 18 who care for family members with a disability, addiction or chronic illness. While Young Carers offers programs specifically for siblings through a program called “Sibs,” not all clients are responsible for aiding their brothers and sisters. Some help sick parents or grandparents instead.
The service is run and funded by Hospice Toronto, and offers weekly programs, drop-in services, seasonal day camps, and monthly group excursions to places like theme parks and movie theatres. It also acts as a liaison between families and schools, stepping in when children can’t attend classes or complete assignments, and helping schools adapt to fit families’ needs.
According to Larisa MacSween, the program’s manager, too often young carers’ needs are eclipsed by those of their sibling or relative with special needs. While carers may be stressed and anxious, many feel too guilty or embarrassed to ask for support when a brother, sister or parent requires extra care. Young carers also seldom get the chance to “just be kids,” as their responsibilities and parents’ commitments leave little or no time for extracurricular activities or play dates with friends.
But at Young Carers, programming blends fun activities with discussion: the idea is to allow kids a safe space and time to relax, while working in serious talks about how to better cope with stress, or how to balance their own emotional needs with those of their family members.
Larisa says one of the most important things the program does is show kids that they’re not alone. “When children find they’re connected to someone else who’s been through the same experience, that completely boosts their self-image and their self-esteem,” she says.
“Having an outlet to think about their own needs, and learning to express them, that also really gives them a big boost.”
This has certainly been the case for Denise’s daughters. She says the program has given them a sense of community and belonging. “[Young Carers] is making my kids feel like they are being heard, they are understood, they are not alone and they have a place to go,” she says.
Currently, the program supports about 100 registered children. But the idea of a young carer is still relatively new in North America. Larisa says that the importance of supporting young carers has only started to be afforded attention in the last year or so in Canada. As a result, few comparable programs exist. And with an estimated 108,000 young carers Canada-wide, many kids still go without help.
Denise believes this needs to change. She says the support Young Carers offers has helped her daughters tremendously.
“With Sydney I notice that when she goes to Young Carers, she comes home and she’s not as anxious as she typically is,” Denise says.
“They both seem to be more tolerant. Tolerant to their sister’s screaming, or not being able to do something that day, like go out and ride their bikes. After attending the program they’re more understanding.”
Recognizing that not all parents will have access to support programs, Larisa says that parents can do small things to help siblings at home. She stresses that communication is key, and suggests parents keep children up to date about the health of their brother or sister, in order to ease anxiety. She also says parents should encourage kids to speak about their feelings, and share their stresses and fears.
Most importantly, Larisa says, young carers should be commended for their work, and validated for the help they provide their families.
“When children hear ‘Hey, you’re really doing a great job,’ that alone can show them how much they are valued,” she says.
Former Canadian Olympian Silken Laumann spoke movingly last night about stepparenting her daughter Kilee, 17, who has severe autism, at a BLOOM speaker event.
Silken was candid about the challenges the family has faced managing Kilee's meltdowns, which can cause her to lash out at others. She talked about losing caregivers who were injured by Kilee and said the family is fortunate to be able to afford both a worker for Kilee, and a person who acts as a bodyguard for the worker.
She questioned how parents who don't have this kind of support survive.
An investigation by the Ontario Ombudsman into over 700 complaints from parents of adult children with developmental disabilities who've been brought to their knees providing round-the-clock care to their kids suggests they don't.
This morning on CBC radio Ombudsman André Marin compared the situation of parents caring for adult children without adequate support to a breaking dam "holding back a rush of water. It can't hold the water."
He referred to a staggering number of parents in despair.
One of these is Amanda Telford, an Ottawa mother and social worker who dropped her 19-year-old son Phillip with severe autism off at a government office two days ago because she and her husband couldn't keep him safe.
"My husband and I are absolutely exhausted and medically unwell," she said, noting that her son functioned at an 18-month-old level, wandered away from the house and required 24-hour supervision. "I am not able to do this anymore."
Ombudsman Marin shared stories of parents who couldn't manage their adult children's complex needs, which sometimes included violent outbursts, on a 24-7 basis. He mentioned a mother who had locked herself in the basement and called 911 because her son was violent. She was told to call the police and he would be taken to jail, or to take him to the hospital. There were no long-term solutions offered.
Marin said many adults with developmental disabilities are living in nursing homes, psychiatric facililties and jail because there aren't appropriate living options for them in the community.
This afternoon Ontario's Liberal government tables its first budget under the leadership of Kathleen Wynne.
Of interest will be whether the Ontario Disability Support Program (ODSP)funding has been cut, based on recommendations from a commission tasked with overhauling social assistance.
According to this article by Carol Goar in the Toronto Star, "Under the new system, there would be no distinction between disability support recipients and general welfare recipients. Under the current system, an individual receiving disability support gets $1,075 a month; an individual on general welfare gets $606 a month."
I was astounded that the Toronto Star was our only major newspaper covering this proposed change.
The ODSP is for people with severe physical or mental disabilities who are unable to work and require daily care. It's for families like the Telfords.
I messaged Carol Goar this morning to ask whether she thought the government would move on this cut. "I believe the premier has realized there’s too much opposition to any change in ODSP benefits to proceed," Goar said. "But it would be best to wait six hours and see what the Liberals actually do."
Doesn't your head spin sometimes, seeing the connections between these stories?
Over 700 families are part of the Ombudsman's investigation and Marin suggests that's just the tip of the iceberg.
So how does it compute that we need to reduce funding support to families like these?
By Megan Jones
Young men with Duchenne muscular dystrophy do not identify themselves as being “disabled” despite the fact that most use wheelchairs, according to a Holland Bloorview study that tracked their move into adulthood.
For two weeks, 11 youth aged 16 to 27 were given cameras and asked to create photo and audio diaries about how they felt about becoming men. They were then interviewed by researchers.
Participants consistently emphasized that they weren't “disabled,” but were “normal” and “a typical guy,” the researchers said. For example: “I have a condition, like cancer. I don’t have a disability.” And “I try to live my life as a normal.” One respondent described a disability as caused by “something a person does,” while a condition like Duchenne’s was “not your fault.”
The researchers coined the term “narratives of non-difference” to describe the ways in which the young men tried to minimize or distance themselves from a disability identity.
They listed school achievements and plans to find paid work and live independently as indicators that they were living "just like everyone else."
They reported that they didn't like to think about changes in their health over time (the muscle weakness caused by Duchenne's eventually affects the heart and breathing and is fatal by age 30 to 40). Talk about the progressive nature of Duchenne’s was avoided.
“Nothing stops me and gets in the way of my life,” one 16-year-old youth said. “I just stay positive and don’t worry about the future.” Instead of thinking about the long-term, the young men said they focused on achieving regular milestones in the immediate future.
Lead investigator and Holland Bloorview senior scientist Barbara Gibson says that while it’s important to stay positive, the tendency of the young men to resist a disability identity could have negative impacts.
Aligning themselves rigidly with non-disabled peers may mean they don’t think about and plan for a future where their medical needs become more complicated, Barbara says. For example, youth with Duchenne's need to decide whether or not they'll use a ventilator as they age, and this needs to be planned in advance.
Study participants equated moving out on your own with adulthood, but this may not be workable for some people with Duchenne's, Barbara says.
It's not surprising that these men have picked up on North American values about what constitutes "success" as an adult: leaving the nest and collecting a pay cheque.
However, the study suggests these dominant social values may be reinforced inadvertently by rehab professionals who support youth with disabilities as they transition to adulthood.
Barbara says many transition programs offer a narrow definition of what adult success looks like and take a black and white "checklist" approach. Tip sheets that emphasize independence and financial self-sufficiency can be problematic for youth with Duchenne’s whose health deteriorates in early adulthood.
"The message of independence in these transitions documents comes out loud and clear," she says. "Independence is presumed good and dependence is bad."
Barbara says clinicians, parents and teachers “need to create space for alternative, but equally valuable, life trajectories."
She suggests transitions programs need to encourage clients to set goals that include a variety of lifestyles and timespans. For example, perhaps a good life for some young men with Duchenne's means continuing university studies without plans to work. Or maybe the goal for some clients is to enjoy passions like wheelchair hockey. Goals that involve living well in the present are just as important as those in the future.
"Professionals need to be aware of how narrow, dominant views of what a 'normal' life looks like can affect their clients," Barbara says. Rehab clinics are a starting place for broadening the discussion of what a satisfying adult life looks like. Peer-to-peer programs could also be a good place for young people to talk about their challenges and successes.
"Right now there are almost no role models for thinking about living with Duchenne's as an adult in a different way," she says "The dominant story is so dominant that you don't hear about alternatives.
“Through advocacy groups, people with other kinds of disabilities have begun to talk about disability in a different way. It isn't about constantly trying to deny the disability or live your life normally. But about living a full life with disabilities, and options for how that could look."
Barbara says that because the symptoms of Duchenne’s appear after a child has had a typically mobile early childhood, the young men see themselves differently from children who are born with disabilities. “They identify more with sick people than with people with disabilities.”
11:29 AM
A mom who writes at Maggie World shared this pic of daughter Maggie, 19 (top right), in her prom dress designed by Anne Marie, 16 (top left).
"It's very difficult for Maggie to wear dresses because the straps from her wheelchair come right up between her legs. Further, her trache tube needs some sort of covering. This daughter of my friend loves to design clothes and designed and created a dress specifically for Maggie to wear to her prom night.
"She drew the pattern, let Maggie pick the fabric and then created it quite literally out of whole cloth. It is difficult to see how amazing this is because Anne Marie made it look so effortless. The straps on Maggie's chair come up through her legs but that's hidden by the design. Because it's a skirt, the straps can come through the waistband and secure her to the chair. The scarf is another amazing feature. It begins as a sash of sorts sewn to the camisole and then continues as a scarf to use for Maggie's trache. "It's ingenious. It's thoughtful. And it's so very generous."
I love it!
Last week I met with an academic who uses comics to build empathy in medical students.
Her name is Shelley Wall and she's illustrator in residence in the medical school at the University of Toronto.
She drew the picture above to better understand her husband's experience of having early-onset Parkinson's disease. It shows the way he adapts his clothes to deal with problems with balance, movement and pain. For example, he wears knee pads to combat frequent falls and boots that help prevent foot cramps.
When Shelley presented this series at a conference on comics and medicine, people in the audience noted that it was apt that she, as caregiver, appeared in the margins. "There were people in the audience who were caregivers and they said 'We don't often see our story told. The caregiver is, literally, marginalized.'"
Shelley, who's an assistant professor in U of T's biomedical communications, uses comics in a five-week seminar for medical students. "I choose snippets of graphic novels that relate to a scene of a clinical encounter between a doctor and patient," she says. "I get my students to do thought balloons for the other characters. So if the piece is about a doctor's perspective, they come up with what the patient or family is thinking."
Another exercise involves students telling a story about a health encounter or ethical dilemma by drawing three panels of stick figures. After they produce their narrative, they need to go back and redraw it from a different point of view. "It's a way of manipulating stories from different angles," Shelley says.
"As a result of going into the head of someone living through an experience and trying to personalize an event, they come to insights that hadn't occurred to them."
Students are often surprised to discover that each patient has a unique story. "One student said: 'We're going through these checklists to come up with a diagnosis but every patient has a completely different story and interpretation of what's going on.' That was such a revelation to her."
Shelley says that images are a powerful way to convey health-care experiences. "The reader puts his or her own self and feelings into the image, and there's so much interpretation involved."
When drawing illustrations students need to pay attention to details they might not otherwise. "When you draw someone you really see them in their individuality in a way that you don't if you're just looking at them. You notice things you don't notice if you're not trying to set it down visually."
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