Last year I spent one fall morning filling out forms so that my 9-year-old son could see yet another specialist, get yet another evaluation, have yet another appointment with someone we were hoping could help us figure him out. At the time, his current diagnoses were ADHD and PDD (Pervasive Developmental Disorder, although NOT the PDD that most people associate with the autism spectrum — more of a child-wide developmental delay), his behavior, his reaction to medication, and the impact his various therapies were having (or rather, weren’t having) on him left us puzzled. Nothing seemed to fit. His diagnoses seemed off. So it was off for round 4 of evaluations.
We were taking him to a clinic that specializes in FASD, or Fetal Alcohol Spectrum Disorder. Basically, we, and his doctors, thought he was exposed to alcohol in utero and it’s this resulting brain damage that has manifested itself in his behaviors, his processing issues, and his learning problems.
Things we knew to be true: my son was adopted. His birth mother was an alcoholic. Things we also knew to be true: if this was his deal — that he had FASD, which is permanent brain damage — he and we would need a whole new level of education, therapies, and strategies for the future.
We took him to the clinic. After interviews with my husband and myself, a session with an occupational therapist and a speech therapist, as well as reviews of the neuropsych exam we’d had done the year before, completion of the Vineland Inventory of Adaptive Functioning as well as an inventory that measures Executive Functioning, plus a visit with a Geneticist complete with facial measurements and a physical exam, we got the results: yes, he was on the spectrum for FASD. Officially, his diagnosis is pFAS. Partial FAS. In his case this means he has all the markers for full FAS except for growth retardation. He’s small, but he’s not small enough to get the “p” taken off, apparently.
But what did this mean? In many ways, nothing changed. He was still the same child he was before the diagnosis. A person is not their syndrome. Diagnostic codes describe very little about an individual. But in many ways, now that we had the official word, everything changed. Behaviors that I had interpreted as being a bad choice he was making now were blamed on the brain damage. The irreversible brain damage. He was not going to change. Which meant that in order to make our family lives better and prepare him for the future what needed to change was US. His dad and me. If we couldn’t change the child we had to change the child’s environment to help him be successful.
FASD is not like your “average” ADHD, where the child has attention and impulse issues but medication, behavioral interventions, and intensive parenting can truly have a big impact and result in a very bright future. No, if a child is on the FASD spectrum, it’s highly likely that he or she will always have impaired behavior and judgment. Always. He or she may not be able to live independently, hold a job, or take care of children. Not the same prognosis as ADHD. Yes, there would be some things we can do to help him, but the outlook for kids with FASD is, in general, fairly limited.
All of this should make me angry, I suppose, but it doesn’t. I’m mostly sad, but not angry. I had no control over what my son’s birth mother did, and I can’t change the past. He’s our son, and just as if I’d given birth to him myself I have to deal with the here-and-now, not the then. There is no woulda-coulda-shoulda when it comes to what happened to him before he came to us. So we’ll deal. It’s a whole new way of thinking about our son and our family, but we’ll manage. He (and we) deserve the best future possible.
Now, I’m not really sure how to say this next part, and I’m really only saying it because I’m hoping it helps someone reading this: could your child, who you think or have been told has ADHD, be impacted by fetal alcohol exposure, too? This goes not only to the adoptive moms, but to the bio moms as well. Is it possible that you drank alcohol when you were pregnant? Because if you did, you should do yourself a favor and look up FASD for yourself (a great place to start is NOFAS). There is no safe level of alcohol in pregnancy. None. And how many of us can say that we truly abstained the whole time? Sure, after you found out you were pregnant — but what about before?
My older son was a happy accident. His dad and I had planned to have children, but we weren’t planning to do it then, and it just happened. Within about 4 weeks I started suspecting something and ran off an bought my pregnancy test, but in those 4 weeks I could have easily have ingested alcohol. I’m not a regular drinker, but what if I’d gone to a party? What if my husband and I had gone to a bar, or a concert, or on vacation? I know TONS of women who didn’t know they were pregnant until they were 2 or 3 months along, and many of these women enjoy alcohol. I drink, too, just not every night. And while I watch myself when I drink, I certainly have had my moments of overindulgence. What if that had happened when I hadn’t known I was pregnant?
FASD could have happened, that’s what.
Now, I’m certainly not suggesting that all kids with ADHD have been exposed to alcohol in utero. Not at all. But if you have a child whose behaviors are above and beyond “typical” ADHD, and he or she was adopted, or perhaps you found out you were pregnant after you were a couple of months along, then perhaps you should consider what I’ve written. Getting an FASD diagnosis won’t change the child, but if your child is experiencing the effects of prenatal alcohol consumption you can educate yourself on the best ways to help.
In the meantime, I’ll keep you posted. It may be a hard road ahead. But my hope is that with more answers, even if they’re ones that make us sad, we can be better parents to our son.
Photo by The Papillon Center for FASD