Parent Time

Three years ago, Joel Miles, then 12, raced to the school office after receiving an urgent summons. Encircled by an exasperated principal, teacher and educational assistant, his brother Stephen, six at the time, was sobbing and thrashing on the floor, refusing to put on his shoes. Joel knew his brother well. "It was just like Thomas' Snowsuit," he explains, recalling the Robert Munsch picture book. "So I whispered, 'Shoes on, Stephen.' And he did."

Joel's six-year-old sister, Rosie, also has a special way with Stephen. "I love teaching him things, like how to hug," she says. "But sometimes Stephen chokes me when I'm reading. Or he pulls my hair and pinches and bites me." Their sister, Sarah, 18, says, "Stephen needs constant attention and my parents always have to chase after him. It's hard to talk to them without interruptions." Each day Joel, Rosie and Sarah, from Fergus, Ontario, deal with difficulties and opportunities unknown to most kids. Their brother Stephen has autism.

The Miles kids' stories are not unique. A 1995 study by the Canadian Institute of Child Health found that just over seven percent of children under 19 have at least one disability, and most of them have brothers and sisters. And even though these kids will be in their siblings' lives longer than anyone else, they typically grow up with few resources. When a child is diagnosed with a disability, the parents are informed about support groups, but sibling needs are forgotten.

When my husband, Jack, and I found out our daughter Talia, then two, had developmental delays, we did research on the Internet, phoned agencies and filled out endless forms, only to discover long waiting lists for services. We had little energy left over for her older sister, Leah. At parent support groups, we vented our frustrations. Our daughter had no one to confide in.

Kids like Leah need support, information and the chance to meet peers who understand. "Sometimes they're jealous of their siblings, who seem to get away with everything," says Claudia Clark, a social worker at the Child-Parent Resource Institute in London, Ontario, where she's a group leader for siblings of children with autism and pervasive developmental disorder (PDD). They also feel protective, and worry their sibling will be teased or left out. Some kids admit to sadness and a sense of loss. "Their brothers and sisters can't be there for them in the same way," Clark says.

Many kids resent the time and attention needed by their sibling, but they also feel guilty for wanting that attention. "My kids say they feel second class in this family," says Stephen's mother, Nancy Miles.

They can also be embarrassed by their sibling's behaviour, especially if the disability is invisible. "Having a sister with special needs can be unnerving," says Leah, now ten. Recently, she invited a new friend over to play on the backyard swing set. Moments later, Leah shrieked, "Mom! Talia's taken all her clothes off!" After escorting her giggling sister inside, Leah told her friend about Talia. "She asked lots of questions," Leah says. "But she didn't tease me or spread it around the school."

Like many older siblings, Leah knows to watch out for her sister. But younger kids often have this responsibility, too. Stacey Friesen, age eight, has Down syndrome. If she wanders off, her little sister Rachel immediately alerts their mom, Pam Friesen. "It's unusual for a five-year-old to have that kind of responsibility," says Friesen, who is president of the Manitoba Down Syndrome Society. "But she doesn't know any different."

Nancy and Peter Miles say their seven other kids (aged six to 25) have had to be constantly vigilant. "For years, we were anxious, anticipating the next moment of intense crisis," Nancy says. Once Stephen pushed out a window screen and climbed onto the roof. Another time, someone forgot to lock the front door and Stephen got out. For 20 terrifying minutes, they scoured the neighbourhood before finally finding him in the street at the other end of town.

Despite some scary moments like these, these kids can reap benefits from having a brother or sister with special needs, says Catherine Costigan, assistant professor of psychology at the University of Victoria. In her research, involving 171 families of children with mental retardation, most siblings had high self-esteem and confidence from caring for their brother or sister. Just ask Rosie Miles. "I teach Stevie how to say cookie," she says. "He takes my hand to ask for help and it makes me feel good. When I grow up, I want to be a child's doctor and help kids with autism." Leah, too, is proud of how she helps her sister. "I've learned to be a good teacher. It's very hard to get Talia's attention, so if I can teach her, I can teach anyone."

What can parents do to make sure this pride doesn't give way to resentment? Many parents stress that one-on-one time is essential. "Small things become very important," says Nancy Miles. "Like renting their favourite video." Friesen, too, sometimes takes Rachel for a special outing when Stacey is at school.

It's also important to have some family time without the child with special needs, says Sandra Fisman, chair of the division of child psychiatry at the University of Western Ontario. "That way the unaffected children can experience normal family activities." Miles says that her family must regularly separate for outings and, when they do go somewhere together, taking two cars is essential. On a recent excursion to the zoo, Stephen was ready to leave after two hours. Nancy drove him home so the rest of the family could enjoy the full day.

"We'd like to hike and bike together, but we're held back," says Friesen candidly. Because Stacey doesn't like these activities, her sister has limited experience with them. But in the summer, Stacey enjoys three days of sleepover camp and Rachel tries outdoor sports with her parents.

Unfortunately, these camps are rare and few people have the skills to care for a child with disabilities. Unless parents have complete confidence in the caregiver, says Nancy Miles, the family can't get a real break. Hiring a caregiver can also be expensive - some parents shell out $11 to $20 an hour for respite workers, though some provincial programs can help fund this expense.

While it may be very difficult for parents to enjoy regular time out as a couple, it's vital. In her research, Fisman found that many mothers of special-needs children with extreme behaviours feel depressed, inadequate and guilty that they're not doing enough to help their kids. "They shouldn't sacrifice themselves and the rest of their family," she says. And when parents get burned out, the kids can start to show emotional and behavioural problems. "Parents set the tone for the sibling's adjustment," says Costigan. "If parents are modelling problem solving, coping and communication, then the children will follow their example

"Kids must feel it's safe to express their worries and resentments without fear of alienating their parents," she continues. Because children are sensitive to their parents' feelings, they may be hesitant. As Leah tells me, "I know how hard it is for you, Mom." Sometimes we just need to ask questions gently, Costigan says. When I asked Leah about her frustrations recently, she told me for the first time that Talia pinches and pokes her sometimes, and that she endlessly repeats the same questions. "Then I wham my pillow hard and sometimes I scream at her. Once I yelled 'I hate you' and then I felt really bad."

Leah also said she needed help explaining Talia to her friends: "I tell them what she can do, and what she has problems with. But I don't know what else to say." A few years ago, we read simple books on autism together, though Jack and I had forgotten to update her with more information. Family relationships change over time, and so does a child's ability to comprehend information, Costigan explains. Not fully understanding the disability, very young children may blame themselves. Sometimes they're scared of "getting" the disability. Rachel Friesen has asked, "Will I get Down syndrome? Is it catchy?" Older children will wonder about their responsibilities in the future.

Don Meyer, director of the Sibling Support Project in Seattle, agrees. "When I talk to adult siblings whose families did well, they say information was always readily available. Not always a formal talk, but a tuck-into-bed kind of discussion. We don't want to make little parents of them, but we want to open the door for them to be as involved as they would like."

They also need to meet others in the same position, he says. Meyer offers workshops on how to plan and run sibling peer-support groups. Now, eight countries, including Canada, are using his Sibshop model. At Sibshops, kids play co-operative games, cook snacks and discuss their feelings about their special sibling. "As they talk about situations that arise, they laugh together and know they're not alone," says group leader Claudia Clark. "We say we don't have the answers. They realize they have the power and expertise." The groups generate a positive ripple effect that ultimately benefits the child with special needs. When siblings feel supported, affirmed and informed, Meyer says, they're more likely to want to remain lovingly involved in their brother or sister's life.

Some families have found alternative ways for their kids to meet peers. Lorraine and Rick Baydack of Winnipeg formed the Downstairs Gang, a group of 11 families that get together several times a year. Each family has a child with Down syndrome. After seven years of meeting, parents and kids share both friendship and practical tips.

And these kids can do well. Says Meyer, whose experience with families of kids with special needs spans more than 18 years: "The more I work with brothers and sisters, the more I'm convinced they have just as many unique opportunities as challenges."

"Brothers and sisters are part of the team," adds Clark. "They're a wonderful gift." Stephen Miles would likely agree. Cradled in his sister Sarah's arms, he sways to rock music and laughs. "Stephen's the coolest little guy I know and I'll make sure no one ever tries to hurt him. After all," she says with a smile, "I'm a rugby player."

Resources

Views From Our Shoes: Growing up with a Brother or Sister with Special Needs, edited by Donald Meyer, Woodbine House, 1997. A collection of essays by children ages four to 18 about their experiences. A variety of disabilities are mentioned, including developmental delays, autism, ADD and Tourette syndrome. Ages 9-12.

Sibshops: Workshops for Siblings of Children with Special Needs, by Donald J. Meyer and Patricia F. Vadasy, Paul H. Brookes Publishing Company, 1994. This guidebook provides detailed information on how to plan, budget, promote and run effective Sibshops.

The Sibling Support Project includes links to resources for parents and kids, a listing of Sibshops running in Canada, and info on ordering the Sibshop curriculum. Also has electronic mailing lists for children to share their experiences.

Parentbooks (1-800-209-9182; ) in Toronto has an extensive selection of books about special needs for parents, children and professionals. Thorough bibliographies about various disabilities are available on the Web site or by mail.

Some provinces have programs that help fund respite hours. For information contact your local Association for Community Living, or the national office at (416) 661-9611

December/January 2001