Our daughter was recently diagnosed with Fetal Alcohol Spectrum Disorder (FASD). Prior to adopting, I didn’t know a lot about it. Turns out that many medical professionals don’t know much, either.
My daughter has had delays since birth. At first she couldn’t swallow: no suck/swallow/breathe reflex. There were sensory issues: a constant need for movement, and becoming unresponsive whenever we were around five or more people. By a year old, she looked like she was all caught up, and we’d stopped Feeding Clinic, OT, and PT. But by 15 months old, my child’s eating was out of control. She was eating everything and anything, including out of the garbage. Her speech was delayed as well.
I went to the pediatrician and brought up FASD. Our pediatrician said no, my child didn’t have the classic facial features, so she couldn’t have FASD. He thought it was some sort of genetic disorder, perhaps Prader-Willie, so off we went to genetics. I brought up FASD again, and the geneticist again told me no, because my child didn’t have the facial features.
We went through multiple rounds of testing, saw other specialists, and grew increasingly frustrated as our child became more aggressive. She seemed to understand things one day, and the next day acted like she had no idea what I was talking about when I instructed her to hand me her shoes.
Finally, shortly after my daughter turned 2, I happened upon someone online who had a child with FASD. I learned that 90% of kids with FASD do NOT have the facial features, and that the criteria for facial features depends on the child’s ethnicity. Often doctors use the criteria for a white child, even when the child in question is not white. As this parent shared her child’s story, I saw my child reflected back.
We were lucky enough to be able to travel to a renowned specialty clinic in a nearby state for my daughter to have a full FASD evaluation. There we got confirmation of the diagnosis. We learned that FASD causes static brain damage. This means that the brain cannot repair itself of this damage, unlike other forms of brain damage. The damage is often not detectable on an MRI. Sometimes FASD is obvious at birth, and other times not until later in life. We were told that some symptoms won’t manifest themselves until later on.
Our days are a mixture of frustration and joy, much like every parent’s. It’s just that our frustrations are a little different! It’s hard for someone with FASD’s brain to make and keep connections, so right now my daughter isn’t able to understand consequences. She learns something and then loses it. We have a baby gate closing off our kitchen, and a lock on the fridge. We’ve had to install an additional lock on our front door, because she can unlock both other locks and escape the house. I have to watch her every minute.
I worry about the future, and I grieve that it’s likely not going to look like what I had hoped for my daughter. I argue with our insurance company, and research therapies on my own because our local doctors don’t have suggestions for us.
But my child? She’s fabulous! She’s funny and cute and gives the BEST hugs. She has her own fashion sense and thinks puppies are the best thing on earth except for maybe her baby sister.
Yes, aspects of my life are more difficult because my child has FASD, but I wouldn’t trade my daughter for anything. My life is a million times better because she’s in it!
