Cake, balloons, goodbye: What happens when your special needs child ages out of the system

A day with Gilly, a teen with autism and developmental delay on the cusp of aging out of the system – and her parents who are expected to pick up the slack.

Dr. Brian Goldman, White Coat, Black Art CBC Radio February 10, 2018

In the kitchen of their Toronto home, they prepare lunch for their 18-year-old daughter Gillian.

Gilly, as she is affectionately called, has low-functioning autism; she’ll never be able to work or live independently. She only knows a handful of words and relies heavily on her parents’ care.

Gilly’s parents, Ian and Rachelle are both accountants in their fifties. Their morning ritual and to-the-minute timing needs to go with clockwork precision.

The bus that takes Gilly to her special-needs high school is due in about a half an hour, but Gilly is still upstairs sleeping.

“The idea is… the more time you give her to wake up and come alert, the more likely it is that she’ll refuse. I can get her up, fed, teeth brushed, hair brushed, in about 15 minutes. So I like to wait until about 16 minutes to go up there,” Ian says, with a laugh.

A few minutes later, Gilly comes downstairs on cue. She lumbers past the kitchen and plops down in a comfy chair that faces a big flat screen. Five foot nine, 265 pounds with blue eyes and medium length brown hair that Ian brushed, she’s ready for breakfast.

Ian offers her the choice of bread, english muffin or strudel. “Muffin,” chirps Gilly.

“You learn Gilly-speak,” says Rachelle. Ian elaborates, “Plain bread is crusty. Toast is toast. Pizza can actually mean pizza, but it also means I’m hungry. Pizza is also quiche. And lasagna.”

“You get them handed back to you when you’re wrong, with tremendous frustration,” laughs Rachelle.

It’s the parents’ intimate knowledge of their daughter that guides them to figure out what Gilly wants.

As Gilly waits for the bus, Ian gives her grocery flyers to look through and draws shapes on a paper to keep her occupied.

Rachelle, who works outside the home, heads to the office. She’ll be back at dinner.

The bus pulls up outside the house. Today, Gilly happily heads down the sidewalk and climbs on. “And success,” cries Ian, as he watches her climb aboard. “It’s relief. As long as she’s happy.”

It doesn’t always happen this way. Sometimes, Gilly refuses to get on board. As the designated stay-at-home parent, Ian needs the six or so precious hours that Gilly’s at school to work from his home office.

The Geddes are also grateful for the things she can do independently. She can get dressed. She toilets herself. But most other daily functions require assistance.

“When the bus shows up, there does have to be someone here to walk her from the bus to the house. So there really is no moment that she is not supervised.” says Rachelle.

Aging out

Looming in the background as the family goes about their daily routine is the fact that Gilly is on the cusp of adulthood.

In just over two years, when she turns 21, Gilly will age out of the public school system. That Geddes will need to find day programming and support.

At 3:30 p.m., the school bus returns, and the game begins. Gilly needs to be occupied from now until her 10:30 p.m. bedtime.

The days are long. Still, Ian and Rachelle want Gilly to live at home as long as possible. Whether that’s possible remains to be seen.

Right now, Gilly is one of around 12,000 young and middle-age adults with disabilities in Ontario waiting for residential care and other supports. Rachelle and Ian say they’re competing with even older aging parents. Some are in their 80s and 90s and have serious health problems and disabilities of their own. The family has been told the wait time for residential care could in fact be decades.

But right now, all Gilly is waiting for, is lunch.

“Want pizza,” Gilly says. Ian tries to sell her on some stew he’s made. She balks, but eventually sits down for her dinner.

After a few tentative bites, she starts eating in earnest.

“Nunch, nunch,” she repeats.

“Nunch means put some of this in a thermos for lunch,” Ian translates another bit of Gilly-speak. “That’s generally a good sign.”

Another tiny victory.

But when she’s done there’s a new request.

“Seat belt,” Gilly says.

Ian and Rachelle try to stall, but it’s inevitable that Gilly will win. Seat belt is is shorthand for a car ride. The drives are so common the Geddes have coined them the ‘Gillian Standard Ride’, or GSR. A ‘GSR’ runs 12 to 15 km and lasts around 20 minutes, long enough to satisfy Gilly’s wanderlust.

Gilly is not easily dissuaded from a GSR. She repeats ‘seat belt’ over and over, sometimes physically pulling Ian toward the car. Today she uses another tactic: Climbing into the back seat and waiting for Ian to follow. After a couple of minutes, Ian buckles. He heads to the garage and backs out into the street.

Ian and Rachelle have mapped out several routes and created some favourite playlists. Gilly is particularly fond of dance tracks and funky bass lines.

As I’m Too Sexy pumps out of the car speakers, Gilly clicks rapidly clicks a ballpoint pen and rocks her head. For Ian, these rides are an easy way to keep Gilly happy until she’s ready for bed.

Ian says it’s challenging to keep Gilly occupied at night. “When she’s in one of her more agitated moods, she’ll be up until midnight or 1 a.m. I’m not going to say that’s a typical day, but for sure twice a week though.”

“There’s two of us that are healthy and we’re quite able to care for Gillian,” adds Rachelle. “But I think if either one of us were disabled in addition to Gilly, that would take us out at the knees.”

“As long as I can drive, I think I’m in good shape with Gill,” says Ian. “As long as I’m mobile, we’re probably good.”

Source White Coat, Black Art CBC Radio

Stories from this episode

What it’s like to have a sister with special-needs, AKA Boo-Bear – Clare and Ellery are the sisters of 18-year-old Gillian who has low-functioning autism. They share the many ways in which Gilly has shaped their lives.

‘The community needs to step up’ says caregiver advocate – “Are we supporting families as much as we can for the whole duration of their caregiving experience?” asks Dr. Yona Lunsky who works with people with developmental disabilities and their families.

Also see
Special-needs youth face ‘big abyss’ after leaving school CBC News
B.C. extends financial help for youth aging out of provincial care CBC News