Today is Fetal Alcohol Spectrum Disorder Awareness Day

Today is Fetal Alcohol Spectrum Disorder Awareness Day.

EMK Press has a 50-page free download called Realistic Expectations, a collection of resources for adoptive parents. It’s a great compilation of articles for the families of children who were adopted, but one of the articles was especially close to my heart. It’s called “Facts About Parenting a Child with Fetal Alcohol Spectrum Disorder” by Teresa Kellerman.

What every adoptive parent needs to understand about children who have been affected by Prenatal Exposure to Alcohol (PEA):

1) There is no way of knowing for sure if a child without obvious symptoms has been adversely affected by PEA, as symptoms may appear later, at or around adolescence. If the child is later found to have Fetal Alcohol Spectrum Disorder (FASD), there is a 90% chance the child will need long-term support throughout adulthood.

2) There is a very wide spectrum of effects ranging from full Fetal Alcohol Syndrome (FAS) to the so-called ‘milder’ Fetal Alcohol Effect (FAE). The children with the milder effects are actually at greater risk of having serious problems later on in life. Since the symptoms are not visible, the expectations of others are unreasonably high (normal) and set the child up for failure and frustration that can lead to depression or aggression.

3) There is also a very wide spectrum of behavioral disorders among the kids who are exposed and/or affected. More than half the children with FASD have ADHD, some have ADHHHHHHD, and some are not hyperactive at all. More than half of the adults with FASD suffer from clinical depression, some of them become suicidal, and some of them cope and adapt very well to the stress of living with FASD.

4) There is another segment of kids with FASD: children who also have mental health issues. Some of the children have diagnoses that are directly related to the FASD, such as the ADHD and depression mentioned above. Other children who have FASD may also have a serious mental illness such as Bipolar Disorder or Reactive Attachment Disorder (RAD). While most people with FASD have some mental health issues, most do not have problems to this degree. Most of our kids are very sweet, friendly (overly so), sociable (without social graces) and would not hurt a bug. There does seem to be a higher rate of mental illness among FASD than in the general population, due to the fact that women with hereditary mental illness are at high risk of self-medicating with alcohol. The children with FASD who show signs of anger toward their mother or show violent behavior with pets or siblings, are most likely among the small percentage who have a serious mental illness. These children need an entirely different set of intervention strategies and medication than those we suggest for kids with classic FASD.

5) Expect the worst, hope for the best, pray for guidance, seek support of others, and plan on spending a lot of time and energy looking for solutions to problems as they pop up along the way. If the child does not have a serious mental illness, the chances are becoming greater that he or she will be able to live away from home as an adult. A good support system needs to be established over the years, and the child must be able to accept the reality of the FASD and the limitations and restrictions that will be necessary to maintain success.

 Teresa Kellerman, Director, FAS Community Resource Center


Also, this is an excerpt of an article called “Fetal alcohol damage ‘a forever thing'” from The Rapid City Journal:

“I started crying right there,” Boesem said [after her two children were diagnosed with FAS]. “But I really love what [the doctor] said. He said, ‘You need to remember these are the same children you walked in here with. You just know more about them now and how to help them.'”

After the diagnosis, Boesem set out to find out as much as she could about FASD.

The first thing she had to accept is that people with FASD have suffered brain damage to some degree and there’s no fix for that damage.

While only about 10 percent have severe abnormalities, the remaining 90 percent suffer from brain damage that presents a plethora of challenges.

Mood swings are common with children with FASD, as are sensitivity to touch, light or sound. Hyperactivity, short attention span, poor social skills, extreme nervousness or anxiety and poor impulse control are also common in children with FASD.

Children may have difficulty processing instructions and have difficulty understanding cause and effect, which often lands them in trouble with the law. An estimated 33 percent of people with FASD will commit a crime between the ages of 9 and 14.

“So many of these kids end up in jail because society does not change for them, cannot change for them,” Boesem said.

Physical deformities sometimes caused by alcohol consumption during pregnancy include distinctive facial features such as small eyes, thin upper lip, short upturned nose and smooth skin between the nose and upper lip. People with FASD also can suffer from heart defects, deformities of the joints and limbs and fingers, slow physical growth, vision and hearing problems and a small head.

The reality of FASD is that it can manifest itself differently for each person and is often difficult to pinpoint, Boesem said.

The most important thing Boesem learned during her research is that she had to change the way she parents her children.

“The kids can’t change for you because they have permanent brain damage,” she said. “Your environment or your expectations have to change.”

“A lot of people think I’m going to fix it. … It’s not fair to you or your child. You can’t go back. … It’s a forever thing,” she said.

Getting the word out about the dangers of drinking during pregnancy has become a mission for Boesem. “It’s become my passion. This is 100 percent preventable. It’s a disability that shouldn’t be there,” she said.

The overall recommendation is that no amount of alcohol is safe during pregnancy, but Boesem said an amazing number of educated women continue to drink during pregnancy. Boesem has a friend who binge drank only twice before she realized she was pregnant. Her child has severe FASD.

“We’re still not aware of the effect that one glass of wine can have,” she said. “Those little brains are forming that whole pregnancy.”

Despite the challenges of raising children with FASD, there are plenty of joyous times as well, Boesem said. She wants parents to recognize that there is help for them and their children. “I hope people who are struggling with stuff and don’t know why will see something here to help them,” she said. “The diagnosis opens the door for the parents to get educated.”


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