Struggle with cerebral palsy brought family closer

Cerebral palsy has left one side of Nicky Howard's body partially paralysed, but her mind largely unscathed. That didn't stop the boys in junior high from calling the bright 16-year-old a "retard."

Her voice quivers as she recalls how they'd tease her and imitate her limp.

But rather than break her family, Nicky believes these experiences have brought them closer together.

"It's meant lots of Band-Aids, words of encouragement and working hard so she can do things other kids can do," says her mother, Bridgett. "People say 'It must be so hard,' but it's not. The disability makes it so that you do everything as a family, so you become really close friends."

Last year, Nicky and her family took part in a University of Alberta research project which compares the dynamics of families of teens who have cerebral palsy with the families of non-disabled teens.

"There is a myth out there that the families of young adults with CP are more stressed out, more dysfunctional," says lead researcher Joyce Magill-Evans, an occupational therapist and professor in the faculty of rehabilitative medicine at the U of A. "But we've found that this is not the case ... If anything, they actually function better."

Magill-Evans and a team of five researchers have interviewed close to 200 Alberta families, half of which have children between the ages of 13 and 15 and half with kids aged 19 and 21. Within each age group, half the teens have cerebral palsy while the other half do not.

Magill-Evans says her group wanted to look at early teens and young adults because, while there are plenty of services for pre-schoolers and young children, services for youth are scarce.

Families faced several interviews and five sets of questionnaires measuring family dynamics, life satisfaction, perceived social support, expectations for future success and demographics like income, age, education and the teen's level of disability.

Two years into the three-year study, researchers have finished all but 10 interviews with severely handicapped 19- to 21-year-olds and are now analysing the results.

"It seems to be the case so far that any extra stress on families comes more from having teenaged children than from having a child with a disability," explains researcher Johanna Darrah, assistant professor in the U of A department of physical therapy.

Nicky's mother, Bridgett, says she actually finds it easier to cope with Nicky's disability than with the pre-teen travails of her able-bodied, 11-year-old daughter Margaret.

"I try hard to bring them up the same, but ... now don't get offended," she says to a pouting Margaret, "Well, I'm a bit closer with Nicky. We spend so much time together ... and we're such good friends. Margaret and I are more traditionally mother and daughter. We have more battles."

But Nicky's life is far from devoid of adolescent angst. Like many teens, she faces the stress of peer pressure. The difference for her is that it's her disability that makes her the brunt of cruel jokes.

"They assume that I'm, like, mentally retarded," says Nicky, voice tripping over the loathsome words. "It's hard because they sometimes forget about me and just see the CP. They just sort of look at me differently when they know I have it."

Now in Grade 10 at Spruce Grove Composite high school, the days of open ridicule she suffered in junior high are gone.

"They were such jerks," says Bridgett, with the anger of a mother who has spent hours wiping away a daughter's tears.

Bridgett too, has faced scorn from her own peers, namely other parents.

"If she falls, they'll say to me 'Don't pick her up, you're being so overprotective.' But they don't see her pain. They only see the one fall, they don't see the 50 before that," says Bridgett.

Others are downright hostile. She recounts how the family once had its car's tires slashed for parking in a handicapped space.

"They assumed that because I was driving and I wasn't disabled, that I shouldn't have a pass."

In fact, many people don't even think Nicky is disabled, which is a double-edged sword, says her mother.

"She's worked so hard to be as normal as she can ... Because she looks normal, people say 'She's not disabled; she's not in a wheelchair' and they won't accommodate her."

While these pressures have an impact on the family, they don't stress relations between family members. Nicky says of all the areas in her life, her family causes the least strain.

The troubles come more from institutions. Bridgett explains how frustrating it is to have to explain Nicky's situation over and over again to get things done. When Nicky couldn't walk after one of her operations, her father Andy had to carry her to school twice a day for a week while her parents haggled to get handicapped bus service.

The U of A study gave Nicky's parents a chance to rant about such red tape. It asked parents and teens how satisfied they are with services they've received and what the teen needs for services in the areas of education, community services (recreation, transportation, employment, housing) and health care.

"They've told us how hard it is to lobby and to have to tell the story 100 times over," says Magill-Evans. "Many are unsatisfied with recreational facilities and with education ... It's our goal to be able to say, 'You're not alone; it's not just you.' "

The research team plans to present its findings at town hall meetings with communities and policy-makers across Alberta next summer.

CP FACTS

* Cerebral palsy is a group of disorders affecting body movement and muscle co-ordination that result from brain damage in early years.

* There are 1,585 Albertans under the age of 18 with CP.

* One out of every 500 babies is born with CP.

* It is one of the most common disability-causing diseases.

* It isn't progressive, but some of the effects of the disease may get better or worse.

* At its mildest, CP may cause slightly awkward movement or hand control. It can make it difficult or impossible to do anything from walking and talking to writing or doing up buttons.

* Half of those with CP have seizures and half have mild to serious learning problems.