When your child has fetal alcohol spectrum disorder, what do you do?

Jul 13 2017

When your child has fetal alcohol spectrum disorder, what do you do?

When my husband and I first looked into adoption, we had the perception that adoption was like walking into a baby store. You knew what you wanted, you put your order in and poof – out comes the baby of your dreams. Call me naïve, (I was), but it never occurred to me to ask the birthmother who wanted to give us her baby whether she had ever drank alcohol during her pregnancy. I knew I wouldn’t and I just assumed she would have done the same.

According to the CDC , 1 in 10 women report drinking during their pregnancy. In addition to that, nearly half of all pregnancies are unplanned and many women continue drinking without even knowing they are pregnant. The CDC says there is no safe amount to drink during pregnancy. Even one drink can affect brain development. It is heartbreaking that fetal alcohol spectrum disorder (FASD) is irreversible. Once the damage has been done in utero, the brain has been permanently altered, and the child will face many obstacles in their life as a result.

We first noticed something was amiss when my son was eight years old. He would have intense fits of rage and throw a blanket over his head for hours afterwards. When most of us get angry, we have the ability to calm down in a relatively short amount of time, but an FASD brain has an amygdala that once it has been activated, can take hours for it to return to its normal size. One cross word from him or someone else in our family could make him upset for hours on end.

My son also developed chronic insomnia, at least four to five nights a week. He now takes melatonin every night to try and train his brain to calm down at night, but even so, he still suffers. He also has a number of learning disabilities and this is common with FASD. My son struggles with dyslexia, dysgraphia and dyscalculia and the FASD has also affected his IQ. The combination of insomnia and the learning disabilities made getting him to public school an absolute nightmare. He would refuse to go and at times I would have to drag him kicking and screaming into the school office, usually late. I am sure the school secretaries thought I was a horrible mother and at times, I felt I was.

We began bringing our son to a child therapist and she was the one who first suspected FASD. I began reading books on the subject and found many characteristics that fit my son’s description. I went a couple of times to a support group for parents with FASD children, but I stopped going because the meetings scared me. Many parents of FASD teens said their goal was just to keep their kids alive and out of jail by the time they made it to 18. I heard stories of kids who ate a pencil a day, and got lost inside their own home. I felt thankful that my son’s situation wasn’t as bad as it could be.

We had our son tested at school, hoping for special education services, but since we didn’t have the FASD diagnosis yet, and because the district doesn’t recognize dyslexia as a disability, they didn’t test for it and he didn’t qualify for any one-on-one help. Because of that, and because of his intense anxiety about school, we decided to pull him out of public school and homeschool him instead. This ended up being an ideal situation for him. If he was unable to sleep the night before, he would sleep in and start school whenever he woke up. I could also tailor my schooling to where he was at academically and I utilized books like “Fantastic Antone Succeeds”, by Judith Kleinfeld and Siobhan Wescott, and “Trying Differently Rather Than Harder”, by Diane Malbin, to help me understand how to teach someone with an FASD brain.

This last February, we had the official diagnosis done by a hospital and even though we were 99 percent sure he had FASD, it was still reassuring to get the diagnosis. I know that sounds strange, but getting the diagnosis meant we could then qualify for services from the county. Some of these services include life skills development and others are services he may need as an adult, like having a guardian to watch over his financial affairs. Only 18 percent of those with FASD can live independently.

What will the future hold for my son? I don’t know, but he has a very independent spirit, a competitive side, and a desire to keep up with others, so I imagine that he will desire to live on his own. He may need some extra help from time to time, but I am glad that his disability was diagnosed, so that he can have access to the resources he may need. Although it is thought that the rate of FASD in the general population is about 2-5 percent, the amount could be higher because so many kids are misdiagnosed. For more information on FASD, visit www.nofas.org.