But for her, and thousands of other Alaskans, living with FAS is an everyday struggle.
Alaska has long had the highest rate of diagnosed cases of Fetal Alcohol Syndrome in the nation, according to Alexandra Edwards of the Arctic FASD Regional Training Center in Anchorage. The center is affiliated with UAA’s Center for Behavioral Health.
New data shows that the tide may be turning, but experts agree that Alaska still produces too many new FAS cases each year.
“Our latest numbers showed that there was actually a decrease overall in the state of FAS rates,” Edwards says. “But we do still have the highest rates in the nation.”
Born in Quinhagak to an alcoholic mother who gave birth to four babies with FAS, Tapey and her younger brother were adopted by an Anchorage family. Tapey was 2 years old. She grew up in a warm, busy house with seven children total, several of whom were also adopted and have FAS.
FAS stands for Fetal Alcohol Syndrome and is also called Fetal Alcohol Spectrum Disorder. As with autism, each person’s impact and symptoms are individual and fall somewhere on the spectrum.
She says she’s always known something was different for her.
As a kid, she had “no filter,” she says. Small upsets felt catastrophic. She had a hard time understanding the consequences of her actions. Her mom tells a story about watching Rachael walk over the carefully-created art projects of other children on her way to get something for herself. She also had – and still has – sensory issues. Certain sounds and sensations disturb her. She’s a lifelong insomniac.
But for the most part, she came off as “normal,” she says.
“It’s a hidden-type thing.”
That didn’t make it any easier. She didn’t understand when other kids were making fun of her.
With the help of her mother Kathy Tapey, a warm, no-nonsense woman with a short gray crop of hair, she got services, help and homeschooling. In her teenage years she did “typical rebelling things” like wearing all black and making friends her parents expressly did not approve of.
“You are not supposed to like your parents when you are a teenager,” she says with a smirk.
But she came out on the other side as a high school graduate with some real friends and better coping skills.
Now, at 21, she is taking tentative steps toward independence.
One of the biggest is getting a part-time job as a substitute teacher’s assistant in Anchorage School District special education classrooms.
When Tapey started working with elementary school-aged special ed kids, she found that to her – and the supervising teachers’ – amazement, she seemed to have a direct line to children with severe disabilities who didn’t respond to anyone else, coaxing a smile and a hug out of one little girl “in her own world.”
“Because I am who I am, they can see that,” she says. “'She’s like me, she understands me.'”
Another boy who rocked himself violently stopped as soon as she put her hands on his shoulders. Teachers comment that she seems to be able to intuit what others can’t about the students.
Tapey thinks she might find a future career in working in special education.
“I really love it,” she says. “I don’t even realize I’m having patience or working hard. It’s just there.”
She also wants to be more of an ambassador for people with Fetal Alcohol Syndrome. And she wants babies to stop being born damaged, as she was, by their mothers’ alcohol use.
“It’s really hard to live with FAS,” she says. “And it is 100 percent preventable.”
