Fetal Alcohol Spectrum Disorder Is Not An On/Off Switch

From JFS Adoption Newsletter

The Adoption Program at Jewish Family Service publishes a monthly Newsletter. In honor of Fetal Alcohol Spectrum Disorder awareness month, we share this excerpt. If you would like more information, please contact JFS at 717-233-1681.

Dear Director,

We welcomed our beautiful daughter into our home as a foster child when she was 3 months old, after her biological mother lost custody due to neglect. We adopted her when she was two. Now our daughter is in third grade and she seems to be really struggling in school. Her attention span is short and sporadic, she is having trouble remembering her math facts, and she struggles with staying in control of her body, her words, and her feelings. This does not even mention that she really struggles with following directions at school and at home.

Her teacher at school asked if she was exposed to alcohol in utero, but I do not have the answer. All I know is she was neglected, and I thought that was enough trauma for one little person. I hate to think she could have the scary diagnoses of FASD (Fetal Alcohol Spectrum Disorder), as her teacher suggested. Plus, she does not look like the other kids on the internet who have it. Please advise.

Signed,
Worried and Confused

 

Dear worried and confused,

The first thing I pick up on is how much you really love this little girl and how much you want her to just be okay, like the other third graders. But I also hear that you know this may never be, and you are already mourning the little girl you thought you adopted and the adult you wanted her to grow up to be. Do not go too far into the future, because she is still very young and if you can get the real diagnosis, then the interventions recommended will go a long way to helping her reach her goals and become who she can become. And if you fear FASD, know that it can be scary to think about, but there are so many pieces of her puzzle, so do not give up too soon.

Next, I would always recommend a complete evaluation from someone who is knowledgeable with FASD, along with other neurological disorders and differences. A good evaluation will include many small subtests, rather than what the school might do during an IEP, and these subtests will help the evaluator develop a fuller picture of how your daughter’s neurological system works. This should lead to a list of recommendations for how her school, home, and community interactions can change so that she can function more fully in each setting. Additionally, she may be recommended for physical, occupational, educational, speech, or sensory therapies to help her achieve more.

FASD, or any other neurodiverse diagnosis, is not an on and off switch, where a child “has” or “does not have” something. They are like dimmer switches, where they may have more impairment in one area and more strength in another. We need to tease out what needs to be turned up and what is strong enough for now. And, this being the neurological system, it will change as she develops, so watch out. What is hard now may become easier and vice versa. Also, it means that each child with this diagnosis may look different from any other. Cool!

All of this is to help your daughter learn best and to give her a sense of competence, to counteract low self-esteem and anxiety. These commonly happen when kids realize they are not understanding what the other kids around them understand. By learning how best to help your daughter, you can also help her teachers and Sunday School playmates and Brownie Scout leader and grandparents and everyone know how to help her succeed.