Living with FASD is lonely and confusing

A few months ago the window fell out of Jim’s third-floor apartment. (Not his real name.) The replacement window has big cracks around its…

A few months ago the window fell out of Jim’s third-floor apartment. (Not his real name.)

The replacement window has big cracks around its frame that let in daylight and the cold.

The balcony door has the same problem, and it doesn’t open.

Jim wrote letters to his landlord, but was told: “Any more complaints  — you’re out. And don’t bring your workers around here anymore.”

The “workers” are from the Fetal Alcohol Syndrome Society of Yukon.

“I need a worker with me to help explain things,” said Jim, who suffers from fetal alcohol spectrum disorder.

It was a Thursday afternoon and Marge MacLeod, one of FASSY’s workers, had just picked him up.

“I don’t know where my DIA cheque (social assistance) is — it was supposed to be here 12 days ago,” said Jim, sliding into the backseat.

“I’ve been knocking on doors in my building and nobody’s got their cheques.”

First stop was the Salvation Army food bank.

Jim, who’s 32, was given a number and sat down.

“You can only come here once every five weeks,” he said watching a woman walk by with a brown bag of food.

“But that won’t last you five weeks.”

Jim is not a regular in the Sally Ann food line.

“I’m only here ‘cause my cheque is late,” he said, carrying his bag out to the car.

Next stop was the department of Indian and Northern Affairs.

“I always have to fight with DIA,” said Jim, sitting in a tiny waiting room at the back of the federal government building.

“What cheque are you missing?” asked one of the social assistance workers opening the office door a crack.

“Is it November’s cheque, or December’s?”

Jim looked confused and overwhelmed.

“I’m missing the cheque that was just supposed to come — November,” he said.

“November’s cheque comes at the end of October, and this is December’s that’s coming in November. So was it this month’s or last month’s you’re missing?” asked the woman.

It’s this month’s, said Jim hesitantly.

He looked near tears.

“So if it’s November, I’ll have to go and do up the paperwork,” she said.

They’re so mean, said Jim, after she’d gone.

“But when push comes to shove, I can’t push back.

“I’m working up a sweat just sitting here, I feel so on-the-spot. I don’t know what the heck they’re talking about, November or December.”

Half an hour later the woman returned with a handful of papers.

“We have your signature for the November cheque, which was issued November 6th, so these forms need to be notarized by a notary officer. Then we’ll check to see if your signature matches the PCRs.”

Jim was silent.

It’s this month’s cheque he’s missing, said MacLeod, noting it was still November.

That December cheque should be here any day, said the woman closing the door.

“It’s so confusing,” said Jim walking out of the office.

“It’s always like that with them.

“I don’t know what I’d do without Marge.

“With people like that, if Marge didn’t come, it’s so hard to explain things.

“Sometimes you just don’t get it, and it’s frustrating.”

“My clients beg me to go to DIA with them, because they don’t want to go by themselves,” said Marge, who spends more than 40 hours a week assisting Yukoners struggling with FASD.

“And DIA should know who they’re dealing with. It’s confusing anyway, throw in a disability and you come away even more frustrated.”

Jim has had various jobs through FASSY and sometimes works under the table for a bit of extra money.

But if he told social assistance he was working, the amount Jim earned would be clawed off his monthly cheque.

“I feel better when I’m working,” he said.

“But I have to get jobs that I can learn hands-on.

“People with FAS are visual learners, but if we’re asked to do three or four things at once, that’s hard.

“I’m not saying we’re stupid or dumb, that’s just the way we learn,” he said.

Back at his apartment, Jim dumped the bag of Sally Ann food onto his bed. There were a few bananas, some apples, a bag of spaghetti, a tin of sardines, a can of beans, a loaf of bread, some oatmeal, a bag of rice and a can of Sloppy Joe sauce.

“This isn’t enough to live off for five weeks,” said Jim.

“But Marge bought me some groceries at Superstore yesterday — I asked her to marry me but she said no,” he said with a laugh.

Jim’s apartment had Christmas lights strung across the ceiling and a tiny, fake tree above his old TV.

“I tried to make it as homey and Christmassy as possible, because it’s just me here,” he said.

“And I’m hoping Santa will come, because I have the place decorated. I just have to leave out cookies and milk.”

Jim spends most of his days alone in the apartment, surrounded by photos of his brother and his adoptive parents.

He doesn’t see his parents very often.

“They’re busy,” he said.

“And my brother’s dying of AIDS in Vancouver.”

Then Jim changed the subject.

“There’s no fire-escape plan in this building,” he said, pointing out two bare wires where his smoke alarm should have been.

“And there’s lots of drinking and drugs in here.”

But Jim is afraid to say anything. It’s hard to get a place, and he doesn’t want to lose his home.

Ever courteous, he walked MacLeod out and held the door.

“Thank you for everything,” he said.

Someone will call about going swimming tonight, Macleod said to Jim as she left.

This has been MacLeod’s day-to-day life for more than a year. And most of her hours are volunteered.

“I love it,” she said.

“I know they appreciate it, and I find it very rewarding.”