Looking towards the future
Just when I doubt if I’d have the stamina of either McCullough or Eleen, I hear another story from my own community of Guelph, Ont. Jennifer MacKenzie’s 24-year-old son, Alec, shares a rented house with two other men with developmental disabilities. Community Living workers provide support from 4 p.m. to 10 p.m. on weekdays, and 10 a.m. to 10 p.m. on weekends, a flexible model of staffing that I hadn’t heard about before in my community.
“We expected that Alec would be living with us until he was 30 or 40 years old,” MacKenzie says. “He’s very content now and loves the freedom as any twentysomething would.” She was thrilled when Alec visited sporting a new haircut. “It was the first haircut of his life that neither his dad nor I was not a part of! It’s amazing that I can go three or four days without talking to or about him with some sort of professional. Even more amazing is that I don’t worry about him [much].” Instead, she enjoys seeing Alec when he returns home for weekly dinners and holidays. When not working as an educational assistant, 51-year-old MacKenzie travels, enjoys a social life and spends more time with her other kids.
But this success story was hard won. MacKenzie and her husband weathered two “stress filled” years when Alec lived in an apartment program with inadequate support and an incompatible roommate. Her advice: “If the family and the individual want independent living, be willing to take a risk and work toward a solution together with agency support. This means you’ll be relinquishing some control as well.”
Finding balance
That’s the key — finding balance between surrendering control and fighting for change. Slowly the system is evolving so that families can piece together a good life. Besides, who knows how much Talia will change in the next few years? As my mentors stress, I need to start by letting my daughter do her own dreaming. The more she can plan her own life, the happier she’ll be. And the more comfortable I’ll feel letting go.
Time to start.
“Talia, what do you want to do when you grow up?”
“Don’t know.”
“Would you want your own apartment?”
“Yes — with a roommate.” Pause. “Awwww, Mom — I’m not moving out right now. Hmm, could my dog come with me?”
She springs off the couch, runs down the stairs and turns on the computer.
Conversation to be continued. We’ve got five years.
