For a quarter-century, Carol Hatch has lived in a big brown house off Arctic Boulevard, raising a family not quite like any other in Alaska.
It’s a house never empty of either people or problems. Carol gave up teaching to be a professional mother to children with special needs, meaning it’s her job to answer an endless string of questions.
Mom, how do I make a salad? Mom, I fell out of the window. Can you come to the emergency room? Mom, I quit meth. Can I stay at your house while I’m pregnant?
Carol is the mother of six adopted children, now between 19 and 29 years old. All six have one very important thing in common: lifelong brain damage caused by mothers who drank while pregnant.
“As a parent your hope is you can raise well-prepared, competent people to go out and be responsible citizens on their own,” Carol says. “I’m providing what they need. It’s just for a lot longer than I thought I would be.”
The children were born in the 1980s and 1990s, when researchers first learned that Alaska had the highest rates of fetal alcohol syndrome in the country.
Carol knew her kids would need special attention, but she didn’t foresee that some of them would never be able to leave and live on their own.
Only about one in 10 children diagnosed with full fetal alcohol syndrome lives independently as an adult, according to researchers. Unable to control impulses and sometimes dangerously naive, they are more likely to be victims of violence or to victimize others. Some people with the disability have average or above-average intelligence but are unable to focus in school because neural pathways in their brains have been destroyed or diminished by alcohol. Such brain damage never heals.
Carol’s children understand all this. Unlike most Alaskans with a fetal alcohol spectrum disorder, each of her kids has been diagnosed by a team of experts. Carol has taught her children to talk about their disabilities without embarrassment.
“We all have struggles, and we all need to understand that there are other people like us,” she says.
So, today, she would like you to meet her family.
Leah stands, spoon in hand, reading how to cook salmon burgers. The chore chart on the wall in the sunlit kitchen says it’s her turn to make dinner. The recipe on her cracked iPhone says these onions, hissing and steaming in the pan, must be “translucent.”
She looks to the onions, and then to her mother. “Are these translucent?”
Carol, the only adult in the house with a license to drive, sits at the kitchen counter filling out page after page of paperwork she hopes will make her second-youngest, Will, eligible for a vocational rehabilitation program. Eventually, Carol imagines, he could bag groceries or work for a friend at Qwik Lube.
If she wasn’t in his life, Will would likely need a state-appointed public guardian to help him file taxes, pay bills and find housing.
Older sister Ari balances her 10-week-old daughter on her hip. Ari quit using meth when she was three months pregnant and now displays a row of polished sobriety coins — nine months! — on the counter.
One of the last times Ari saw her biological mother was when they were both in Hiland Mountain prison, she says.
Another sister, Simone, isn’t home right now. Like Ari, she is battling a meth addiction. She should return from a recovery group meeting shortly after dinner.
As the family waits, RJ emerges from his bedroom. When not in his room, he sometimes spends the night in the alders and birch trees that ring Anchorage. “He would live in the woods if he could,” Carol says. “He’s recreationally homeless.”
The daughter of an Aleut railroad worker and a Wisconsin farm girl who moved to Alaska to teach, Carol never planned to adopt so many children. But as an Alaska Native, tribal courts preferred to place Yup’ik and Aleut children in her home.
The six children were born when the rate of fetal alcohol syndrome among Alaska Natives was as much as 16 times higher than for the rest of the state, according to the Centers for Disease Control. With a focused statewide effort, Native rates plummeted. The gap between Natives and non-Natives is now much narrower.
The oldest of Carol’s adopted children, Kellen, has lived with her since she was a toddler. Carol remembers seeing Kellen’s biological mother homeless on the streets of Anchorage. The mother also gave birth to RJ, Will and three other children who do not live with the Hatches and have all been diagnosed with FAS.
Starting today, if no more Alaskans were born with FAS, the state would still face a heartbreaking public health crisis for decades to come. Historical birth rates suggest at least 10,000 people — Alaskans just like the Hatch children, but usually without the benefit of a formal diagnosis — live with the disability. They fill schools and prisons and workplaces, struggling to navigate adulthood, starting families of their own.
Over the course of a lifetime, one child born with FAS is estimated to cost the state from $1 million to more than $4 million for health expenses, foster care, treatment and assistance. Three of Carol’s children have the full FAS diagnosis.
Her children have it better than many because they live in a caring home where everyone understands their brains work differently. Still, every year there are more worry lines on Carol’s round face. She knows the day is coming when she won’t be able to ferry adult children around town in the family passenger van. Her savings, dwindling now that the children are adults and she is ineligible for adoption subsidies, are disappearing.
The Daily News visited Carol and her children regularly over the past nine months. They are very much a family, but also a microcosm of the simmering crises and everyday heroics caused by a serious disability that thousands of Alaskans share.
Originally published May 3, 2014 by Kyle Hopkins in Anchorage Daily News