Family Matters

At Home with Adult Children with Disabilities

By Lynne Swanson

Sean Currie, centre, celebrates his 40th birthday with his parents Joan and Pat (Photo: Nick Hart)

Elizabeth VandenBoomen and her husband, Gerry, believe they will never be alone. The couple expect Rachael Hennessey, 16, Elizabeth’s daughter from her first marriage, to remain with them through Rachael’s adult years because of her complex disabilities.

The couple carefully considered that factor before marrying in 2004 after dating for six years. “It will never be a case of ‘the kids are grown up and now we can get a small house or go on vacation’ or whatever people do as their children go on to college or university,” says Elizabeth. “Gerry loves Rachael...He knows [her needs] will always be something we will plan for.”

The blended family lives in a twostorey condominium with Rachael and her sister, Victoria, 12. Elizabeth’s oldest daughter, Laura, 23, lives in her own residence with her two children. Gerry’s two children, Jake, 13, and Tara, 10, visit regularly. “They all get along like brothers and sisters. In other words, fine sometimes, and they hate each other at other times,” Elizabeth laughs. “Siblings are usually like that.”

Rachael has an intellectual disability caused by viral encephalitis at age two. She is nonverbal and also has multiple physical disabilities. She attends school full-time and will continue to go until she’s 21. Because Rachael can’t indicate her needs, Elizabeth thinks it’s unlikely that her daughter can live in supported housing or a group home as an adult.

Elizabeth wonders about Rachael’s future and her own ability to care for her daughter, especially as Rachael grows older and her size and weight increase. Elizabeth says that London, Ont., where the family lives, is a great place to be as it offers a lot of services. At the moment, the family uses the seating clinic at Thames Valley Children’s Centre, but they haven’t fully explored all their options. “We don’t need that many resources, but when you need them, you need them,” says Elizabeth. “It’s really good to know what’s out there.”

Across the city, Sean Currie, 40, has lived with his parents, Joan and Pat, his entire life and is happy with them. Sean suffered a head injury in an automobile accident when he was five. Intellectually, he functions at about age 12 or Grade 4, academically. He also has hemiplegia and partial quadriplegia as a result of the accident. He is able to walk, but has some paralysis in each leg and total paralysis of his left arm.

“I really like living at home,” says Sean. “I get to go to hockey games with my dad in the wintertime, and I get to help my mom out by watching my nephews when she’s busy.” Sean also helps with chores. He’s responsible for cleaning his room and the kitchen, vacuuming the living room and dining room, and helping with yard work.

In addition to his bedroom, Sean has an area of the lower level for himself, where he has his own TV and VCR. When he was 17, the family installed an accessible bathroom with financial assistance from Easter Seals. There is a double-width whirlpool, which helps Sean’s circulation, and a shower with a bath seat.

If Joan and Pat go on a trip, one of their other four children and his or her spouse stay with Sean. If his parents are someday unable to meet his needs, Joan says, “Sean would have a choice of where he wants to live.” She adds that meeting Sean’s needs is “very, very much a family affair.”

Sean has an active life away from home. He was recently hired part-time at McDonald’s. He also plays cards and video games, goes to movies or clubs with his brothers or friends, listens to music, plays golf, curls and bowls. The family’s home is considered an “open house” for Sean’s friends. He attends computer courses and other training programs through Hutton House, a London agency providing services to adults with disabilities. He regularly uses Paratransit (London’s accessible public transit). To help support him, Sean receives a provincial disability income, but in an amount less than if he were living independently.

Sean Currie (second row, left) with his family

Things haven’t always been so rosy in the Currie household. When Sean was a teen and young adult, there were times when he lashed out verbally and physically. Joan and Pat learned his behaviour was related to “head injury syndrome.” At the time, Sean was also taking numerous medications for frequent seizures.

After one incident in which Joan had to call the police, she and Pat – who believe in tough love – gave Sean a choice: change his behaviour or move into a group home or elsewhere. “That just broke his heart,” Joan recalls.

In 1989, Sean had surgery to control his seizures. A year later, he came off his seizure medication and has not had a seizure since. “His entire personality changed,” says Joan. “He still has flareups every once in a while, but now if I see something is making him very, very angry, I sit down and say ‘Hey, let’s talk this out,’ which usually resolves issues.” Now, Joan says, most of the conflicts arising from Sean living at home are the same as those parents have with children without disabilities. “Get your laundry downstairs. Fill the dishwasher. Clean your room,” Joan says, by way of example.

Sometimes, Joan or Pat advocate for Sean’s health care or protect him from people who try to exploit or abuse him, but in general, Sean makes his own decisions. “If, as his parents, we feel that anything is inappropriate, we discuss it, and we can always come to some compromise,” says Joan. “That’s how I deal with all of my children, not just Sean.”

Maureen Wood, Occupational Therapist, O.T. Reg. (Ont.), in the Self-Discovery Program, Family and Community Services at Thames Valley Children’s Centre in London, encourages parents to help their children with disabilities “make that bridge” from school to other lifestyles or choices. Wood says it’s usually those with developmental or intellectual disabilities who remain with their parents into adulthood.
Adult children living at home is sometimes “a shattered dream,” says Wood. “Most parents, when our kids are born, expect them to eventually fly the coop. That isn’t happening for some of these parents and kids, so that’s a shift in their hopes and dreams.”

Instead, Wood encourages adopting a modified form of those aspirations by finding new interests in which to participate and explore. “The goal should be to get the child to be more independent in whatever way they can.”

Wood suggests that young adults explore activities that are meaningful and give them joy and a sense of accomplishment, and are perhaps a little bit of a challenge so they push themselves and learn. This could include leisure, volunteering, education, employment and other activities, based on each youth’s unique strengths and abilities. It may take persistence and creativity to find suitable programs, but it’s important for young people to participate and engage in new experiences. Woods adds that they should be encouraged to make choices within their abilities and capacity, as this teaches self-determination skills and promotes independence.

It’s critical to obtain necessary supports, accommodation, resources and equipment when a young person prepares for life after school. Wood urges families to learn about these and other resources well before a son or daughter leaves school, as planning can be complex.

Equally important is that adult children have chores and responsibilities, develop friendships, and learn about finances, personal safety and how to access transportation, all within individual capacities. “They may never be completely independent. They may be interdependent, but that’s better than assuming dependence for life,” Wood concludes.

To help adult children with disabilities find direction and autonomy, Joan Currie advises parents, “Follow your heart. As a parent, you know the core of strength you have given your children. Just have faith in them.”

Lynne Swanson is a freelance writer in London, Ontario.

THINKING AHEAD

Check out these resources for youth and their families:

Ability Online
www.ablelink.org
A free online community for young people with disabilities and illnesses.

D.O.O.R. to Adulthood
www.ablelink.org/public/transition/default.htm
Provides info about services and resources for the transition to adulthood for youth with disabilities in Ontario.

Families for A Secure Future
www.familiesforasecurefuture.com
Families of children with developmental disabilities provide mutual support.

The Ouellette Family Story
http://home.cogeco.ca/~aco-web
A mother tells of her son’s transition to independence.

PLAN
www.plan.ca
This not-for-profit organization helps families create financial plans for their loved ones with a disability to ensure their security and well-being.