Many years ago when we began the journey to add to our family through adoption, we knew God was leading us to Eastern Europe. We considered all of the countries that were open to American adoptions, the cost, the travel, time required in-country and more. There was one more thing we needed to consider, but I’m not sure we understood how seriously we really needed to take it.
As we dove deeper into the paperwork, we filled out question after question about what things we would accept and not accept. Glasses, deaf, Down Syndrome, Spina Bifida, Cerebal Palsy, mental issues, physical issues, alcohol exposure…the lists went on and on and we had to answer those questions over and over—refining as we went. We had to consider not only our “preferences,” but also the impact our answers to the questions would make on our family as a whole.
When a family decides to adopt from Eastern Europe, it is a very real possibility that Fetal Alcohol Syndrome (FAS) will play a part in their child’s story. FAS is a risk no matter where a child comes from, but it is higher in Eastern Europe. However, despite warnings, I wonder if many Eastern European adoptive families are like me…they know that FAS is a risk, read a little about it, but pray like crazy that it won’t affect their child.
When we read the medical file of Daughter of Purpose, nowhere did it indicate alcohol exposure. None of her pictures revealed the physical markers of FAS. Frankly, we cruised along until she was school-age having no idea that she was neurologically impaired by Fetal Alcohol Spectrum Disorder (FASD). This is the term used for someone that suffers neurologically from the affects of prenatal alcohol exposure, but does not have the physical markers. Somewhere I read (I wish I could remember where) that a birth mother only needs to drink between pregnancy days 17-21 for the physical markers to show up. That leaves the rest of the pregnancy—276 (out of 280) days for a baby to be exposed to alcohol with no physical markers to show the “invisible disability” that lurks below the surface. I wonder how many other adoptive (or biological, for that matter) families were taken by surprise when FASD surfaced? Or how many are dealing with its effects daily and have no idea what they are seeing?
I am absolutely an Autism advocate, but the more I dig deeper into FASD for my Daughter of Purpose, it astounds me at how little our American culture knows about it and it bothers me that it’s not taken seriously. It’s often written off as some other diagnosis.
Let me just say, no matter where you live
There is no safe amount of alcohol in pregnancy…ever.
Trust me. I live with its effects every.single.day.
There are all sorts of things that can flesh out as Fetal Alcohol Spectrum Disorder. Similar to Autism, there is a spectrum to fall on. However, there is a core that resonates for every family I’ve talked to, every story I’ve read or seen in the research journals. Looking back, FASD was surfacing long before we put the pieces together. If you are wondering what we saw early on, here is what we saw in our Daughter of Purpose:
1) Her language was good as a whole, but she had certain words she just couldn’t remember to save her life. ie: She could never, even after years of being in our family, remember the proper word for eating lunch mid-day. She called it dinner every single day. She called a towel a napkin. She called them friendship fries instead of french fries. I’ve now learned that she has enough receptive language to cover herself, but begins to falter when she needs to tap into her expressive language. We call her language “Swiss Cheese.”
2) We would have repetitive conversations. We could have the same conversation 5x/hour and she would have no clue we had just discussed it a few minutes before.
3) Lack of ability to remember to do simple things like put her pajamas under her pillow or in the laundry daily. Yet, she could remember to brush her teeth, her hair and get dressed. Forgetfulness in a way that didn’t make sense. Why could she remember all those other things, but never to put her clothes in the hamper? Some things connected, but some didn’t.
4) Leaving things all over the house. Looking back, I honestly think she just didn’t remember what she was doing when something distracted her to move on to something else. This caused a lot of grief (and still does) because she would leave mess after mess after mess all day long and then when she was responsible at the end of the day to put it all away, she would be completely distressed and overwhelmed at the severity of the task.
5) Talking, talking, talking, talking. Again looking back, I realize that she lacked the filter to know what and when something should come out of her mouth. So everything she thought, came out of her mouth. I’m pretty sure that not a thought went through her head that didn’t come out of her mouth.
6) Same went for her emotions. She’s always worn them all over her face. I always knew exactly what she was feeling because I could read it on her face and in her body language. She had no ability to hide it.
7) Inappropriate use of emotions/social skills. When she came to us, she had no idea that it was inappropriate to laugh at someone when they got hurt. She had no idea that when you are hurt, you are supposed to cry. She laughed when she was hurt. We had to teach her the correct response.
8) When playing with friends, she would usually end up the butt of jokes and was easily persuaded into making poor decisions because she had no ability to recognize a good vs bad choice. She could be at the park for a small amount of time and still find that “bad” crowd that would convince her to do something completely foolish and then she’d end up in trouble and those that persuaded her came out squeaky clean.
9) Lack of cognitive reasoning or cause/effect. Day after day she would make the same mistakes and not have a clue how to change her decisions to get a different result the next day. Ex: Every single time she played “Hide and Go Seek” with her siblings, she’d give their hiding spots away. It would make them so frustrated that they no longer wanted to play with her. The next day when they would begin to play again, she’d have no idea why they didn’t want to play with her.
Now that we’ve taken the lid off the FASD box, we daily see it’s far reaching effects into her life. She still struggles with every one of the above and even more now that we have eyes to see it for what it is. When I initially lifted the lid off of FASD, article after article gave me little hope for my Daughter of Purpose and I was scared. I was scared to raise this child that “they” said was inevitably going to end up on the streets or in prison. She would not change “they” said.
But there is hope, friends. In part two, I’ll share надежда (nadezhda)–as they say in her native country.
You are probably right, HollyMarie, but I think the clear difference is when you get into the memory and processing issues. I used to think what I saw when she was younger was just orphanage leftovers, but now–looking back–it was there. I just didn’t know what I was seeing.
I would guess that numbers 1-6 are extremely common in many kids who have suffered from malnutrition, institutionalization, or both. (My daughter who came to us at age 6.5 from Ethiopia exhibits all of these). Numbers 7-9 are much more telling though, and my dear friend who has two children with FAS have those traits as well. It is so hard.