How fetal alcohol spectrum disorder affects families in Hillsdale County

Editor's note: Names in this report have been changed, at request for confidentiality.

Why is my child struggling in school? Why do they consistently make the same mistakes? Why aren’t they progressing in maturity the same as their peers? Questions like these are on the minds of several parents in Hillsdale County’s community.

One parent, Sam Jones, learned the answer to questions regarding her daughter’s behavioral issue was fetal alcohol spectrum disorder (FASD).

“My daughter came to us through foster care when she was 11 months old. We didn’t have a lot of information, but later as things started to come up with behavior, we sought testing to figure out what was going on with her. It took us a very long time because I think there was very little information, even in the medical field. She was in fifth grade when she was diagnosed after having been misdiagnosed several times before that.”

Jones said FASD arises from fetal exposure to alcohol during pregnancy. Centers for Disease Control and Prevention describes it similarly, with FASD considered an umbrella term of what can happen to a baby before birth when the mother drinks.

Another Hillsdale County parent, John Smith, described specific challenges in the lives of FASD children and adults.

“Primarily, they struggle with not learning or slowly learning from cause and effect, trouble with associative reasoning. Metaphors and analogies don’t work. Confabulation is very real to them," he said. “It’s hard to teach somebody if they don’t learn from cause and effect. They’ll try something 99 times with the same effect, still thinking that it’ll work the 100th time.”

During everyday activities, children and adults with FASD function best on a schedule. Smith’s son and Jones’s daughter share that aspect.

“At home,” Jones said, “we tend to go about the general rule of thumb that she’s operating at half of her chronological age. She definitely likes to be on a schedule. She doesn’t like when things go off her routine. One thing that makes her feel better is having a routine, so we try to keep it that way.”

Smith added that, “The chronological age doesn’t match up with their brain stage so it causes dysmaturity. Where they highly excel in their strengths and special interests, their social, emotional, and cognitive levels are lacking.”

Smith’s son, Steve, shared his experience as a young adult with FASDs.

“FASD is Fetal Alcohol Spectrum Disorder, and it is caused when someone is in the womb and the mother drinks," he said. "It prevents the brain from growing, often damaging the brain as well. It affects me in the way I live, my executive functioning. Things like thinking things through, basic math, making big decisions as well.

“I don’t know if it’s jealousy or not, but seeing other people my age, having a job, already learning how to drive, learning how to step up and take some of the responsibilities from their parents from when they were kids, it makes me feel embarrassed. It affects the possibility of being independent, and it’s a natural desire for a guy to want to be independent.”

Because of the challenges that Steve faces, his parents explain that scaffolding is needed lifelong for him to be successful. Things such as eating on time, paying bills, having a job, making doctors appointments, getting groceries, and other everyday basics of living and taking care of oneself are integral issues with which Steve struggles.

“There is so much ableism towards FASD individuals,” Steve’s father continues. “Because of FASD being a permanent condition, everyone advocates and pushes for and funds, and now the national government has said you can’t have federal money if you’re not pushing for independence.

“They need scaffolding and supports lifelong, in order to be successful. They need interdependence, not complete independence. Someone to be their second brain to fill in the parts of executive functioning that they are lacking. With FASD, you can be an academic genius and sit in prison your whole life because of the lack of executive functioning.”

Steve joined in to share what he wished more people would understand about FASD.

“It’s a thing. Drinking when you’re pregnant CAN affect the child’s outcome. It may be a one-time drink, but it can cause permanent damage. It prevents vital organisms in the brain from forming and developing. A good example is the cerebellum… it’s the back part of the brain that does muscle memory and that. If (mothers) drink, it can prevent it from working; it can cause it not to form properly, which can result in bad muscle memory, shaking all the time, dizzy spells and balance issues.”

Jones shared the gravity of this condition by saying, “I think that one of the preconceptions that need to be addressed is that a little bit is not going to hurt anything. Any amount [of alcohol] during pregnancy is not okay.”

“It’s not the end, though,” Steve concluded. “You can’t undo damage, but you can prepare and put support structures in place for when he or she grows up.”

Smith added a final thought.

"FASDs are hidden and entirely preventable disabilities. They are more prevalent than autism, down syndrome and cerebral palsy combined."

According to Nofaswa.org, FASD is the No. 1 preventable birth defect, Smith said. It affects about 5 percent of the population, and up to 15 percent of vulnerable populations.

This article originally appeared on Hillsdale Daily News: How fetal alcohol spectrum disorder affects families