The poetics of FASD

Jenny Jackson went to the Whitehorse hospital to visit a friend, and came home with a baby. The tiny little girl had been in the hospital for 17 months.

Jenny Jackson went to the Whitehorse hospital to visit a friend, and came home with a baby.

The tiny little girl had been in the hospital for 17 months.

“The child’s mother was an alcoholic and died five months after the baby was born,” a specialist told Jackson at the time.

“This baby is deaf, blind, severely retarded and will never walk or talk.

“She will end up in an institution, so it’s no use to take her.”

But Jackson didn’t listen.

She and her husband knew the baby’s father and when they heard his daughter had never left the hospital, they stopped in to meet the little girl.

The one-and-a-half-year-old only weighed 10 pounds.

“Her eyes hung shut and her mouth hung open, and her dark hair was all around her face,” said Jackson.

When she picked the baby up, the tiny body squirmed and twisted to get away.

She passed the little girl to her husband.

“And when he started talking, she put her tiny hands on his throat,” said Jackson, tears filling her eyes.

“And she tipped her head way back so she could look at him from under her drooping eyelids.”

Something happened in that moment, said Jackson.

“We both looked at each other and said, ‘Let’s take her home.’”

Thirty years later, Jackson has written several books and teaches fetal alcohol spectrum disorder workshops.

The little baby, named Crystal, is now 33 years old.

She’s still tiny—a girl’s size 12—but she’s not deaf, blind, or mute.

And she’s not in an institution.

Jackson was only 30 when she brought Crystal home.

She’d never heard of FASD.

“In those days there was nothing—not even the name,” she said.

“All they said is that the mom was an alcoholic and the baby was born premature.”

And there was no Fetal Alcohol Syndrome Society of Yukon back then, said Jackson.

“I learned about FASD from Crystal—what worked and what didn’t.”

But there is still very little understanding of FASD and its effects, said Jackson.

The trouble is, FASD is like “a giant fan,” she said.

“Some people look completely average, and you’d never know they have any difficulty at all with understanding anything. And then there’s others who are very physically disabled and don’t have speech, and Crystal is very much on that side of it.”

Crystal’s older sister, Sue Ann, sat with Jackson during the interview on Tuesday.

Less disabled than her sister, Sue-Ann talked about a job she’d had supervising a bottle depot in BC.

Sue-Ann also talked about her 13-year-old daughter Kaitlen.

All these women have lived with Jackson at different points in their lives.

“It’s family,” said Jackson. “We’ve always been there for them.”

But it’s been hard.

“You love and care for someone all your life, and then they can just walk out of your life and not look back,” she said.

It’s all part of understanding the effects of FASD.

When Crystal turned seven, Jackson started writing.

She was having dinner with her husband and he suggested she write a book.

“It just hit me,” she said.

“That moment is frozen in time—I remember I was eating a baked potato.”

The next day, Jackson sat down in front of a blank piece of paper, and everything started pouring out.

“I just wrote and wrote and never stopped,” she said.

The result is a book of poems Jackson self-published in March called, Silent No More! A Poetic Voice Breaks the Silence of FASD.

Most of the poems are by Jackson, but there are also some by Sue-Ann, and her daughter Kaitlen.

“When my Mom and Auntie were in school everyone left them out,” reads a poem by Kaitlen.

“Was it because they looked different, Was it because they were strange, Or was it because they had FAS?”

Sue-Ann wrote one about her mother.

“Where’s that Mommy when we need her?

“Looked up and down and all around, But we couldn’t see her.”

Sue-Ann and Crystal had the same mother, but different fathers.

Sue-Ann was two-and-half when her mother died.

“I hope the book is used to educate people and bring understanding for people with FASD,” said Jackson.

“Because if people don’t have some personal experience knowing someone with FASD, there’s no way they’d understand.”

Jackson is worried about her “little girl.”

“I am getting older,” she said.

And there is no support for aging parents who have adult children with disabilities.

“There is nothing available for the parent who works day and night for years and years until they run themselves into the ground and can no longer do it. So you let go of your child, and they end up in the government system, and instantly everything is available to them—they are put in a group home with 24-hour care.”

Crystal joined her mom at the coffee shop, grinning and talking with her sister.

Sue-Ann brought her a glass of cold water so her eyes would open wider and they laughed about it.

Crystal will continue to grow older, but she will never grow up, said Jackson.

It’s like living with a toddler, she said.

“It’s all consuming, it’s just like forever. There’s no empty nest, there’s no light at the end of the tunnel, because nothing changes, it’s permanent brain damage—the need is always there.”

Jackson’s book is available at Mac’s Fireweed Books, Snack and Gifts at the Whitehorse airport, and the Salvation Army bookstore.

Contact Genesee Keevil at

gkeevil@yukon-news.com

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