By Jake Laxen, St. Cloud Times
Crystal Chmielewski is playing with the family dog two hours before her orientation at Bridges.
"I'm pretty excited," the 19-year-old says about her first day at the Sauk Rapids High School program that will help her prepare for a career.
"She's a social person," explains her mother Pam Chmielewski. "She loves being a part of things. She likes to meet other kids and staff."
Despite battling Fetal Alcohol Spectrum Disorder (FASD), Crystal scored average to above average on her social recognition skills at her last mental evaluation. Crystal also walked with her graduating Foley High School class last spring, earning a graduation party in her backyard.
FASD is a 100 percent preventable form of brain damage that affects 1 in every 100 people born in America to varying degrees. Crystal's effects have been categorized as severe.
"It's been an interesting journey. We've learned a lot," said Pam, mother to Crystal as well as a son who battled and beat leukemia. Both children are adopted.
"I think we've learned a lot about ourselves."
Along with her husband Rob, the Chmielewskis have conquered the peak of Crystal's struggles that included a nine-week hospital stay, holes in their walls and many frustrated attempts to calm her during violent outbursts.
Pam now shares her parenting experiences as the Central Minnesota FASD program coordinator.
"When Crystal is having as meltdown you can't talk to her because she is so angry," Rob explains. "After you calm her down, you talk to her - she won't remember. That's her short-term memory loss."
The short-term memory loss remains Crystal's biggest obstacle.
"I think that's why she can't read," said Rob. "She'll read down one line, she'll get down to the next line and she'll miss the same word she missed the previous time."
When Crystal was in third grade, she tested at a first-second grade reading level. A psychiatrist predicted that would be as far as she'd advance.
"I thought 'You can't say that, she is only in third grade,'" Pam said. "She is going to get better. You can't tell that yet.
"She has gotten better in some areas but others, like reading, have stayed the same."
The acceptance of limitations has made managing Crystal's disorder easier. Instead, school and the Chmielewskis emphasize her strengths, such as social awareness.
Their first breakthrough came when she cried, showing emotion for the first time.
"It seems weird to say, but that was a light at the end of the tunnel," Pam said. "She showed the capabilities to feel the appropriate emotion."
Pam also attributes her progress with social recognition to their people-watching game in the deli at Target.
"We would go 'How do you think they are feeling?' " Pam said. "She learned social cues. When we first got her she didn't understand empathy or sympathy."
The Chmielewskis adopted Crystal when she was 4 months shy of 4 years old. Crystal's birth mother was honest about drinking throughout her pregnancy.
"At first I really had anger towards our daughter's birth mom. 'How could you do that? This is horrible,' " Pam said.
"Now I work closely with women in treatment. It's like, God, they are not here because they want to be. They are here because they have a sickness. It is an illness. They didn't choose it. It hijacks their brain."
Pam counsels families experiencing similar struggles with FASD. She also focuses time on prevention.
The Chmielewskis point out they aren't opposed to drinking alcohol.
Pam notes that the Minnesota Municipal Beverage Association is a key patron of FASD organizations.
"When you have a chance of being pregnant, it's not worth the risk," Pam said. "There's so many other things in life like Down syndrome and Fragile X syndrome that aren't preventable. And there is FSAD and it's 100 percent preventable.
"The big key is getting everyone on the same page. There are still some doctors who say it's OK to have a drink or two while pregnant - that's not right," she said.
The Chmielewski family has crossed paths with FASD patients who were the result of drinking just once - at a wedding when the mother wasn't sure she was pregnant. They've seen a set of twins where one child was impacted by FASD and the other wasn't.
Pam said the biggest rise in FASD has come with college-educated women.
"Fifty percent of pregnancies are unplanned," she notes.
And while Pam and Rob have battled through the complications of severe FASD, they are in the process of adopting again.
"Shhh, some family members don't know yet," Pam said.
"Those impacted by FASD are a tough group of parents, meaning they are strong. You have to be."
(Editor's Note: Your humble executive director is a Minnesota Organization on Fetal Alcohol Syndrome board member.)
