A couple of months ago I promised a post devoted to ZP, and here it finally is.
Last month my friend K and I took our Ukrainian kids to an FAS clinic in Atlanta. It was quite a day. Where we live, there is no one in the medical or psych or school community who really understands FAS, so we have some big hopes for the packet that we are supposed to get from them in another week or so. One of the things that is so difficult about trying to get various kinds of help for issues pertaining to FAS is that there are aspects of it that look like other things - i.e. hyperactivity and lack of attention look a lot like ADHD, but they're not ADHD in a child with FAS. Some parts of the clinic trip were a little silly, and some were a little disturbing, but overall we both feel like it was worth it and we are hoping that our packet of stuff will help us when trying to obtain services or treatments of various kinds at our pediatrician, neurologist, etc. K was able to get an official diagnosis of FAS for her kiddo, which is going to come in really helpful in the future. We already had a dx - it's actually in our court documents from Ukraine, which as I understand it means that ZP's mother actually admitted to heavy alcohol consumption during her pregnancy. I think that is the only way they'll actually document it over there.
Here's a pic of the two of them when we first arrived; EM is seven months younger than ZP:
Probably the most interesting part of the visit was with the geneticist. He did a full physical exam, including measurements of certain features and whatnot, as well as asking the kids certain questions and requesting that they perform some different tasks that demonstrate either cognitive ability or various motor skills, etc. Each thing was noted on a chart of characteristics of FAS, and then the whole thing is scored. When he was done with ZP's exam, he told me that a score of 10 is considered "normal," while between 1o and 15 is considered probable FAS, and 15 and above is considered definitive FAS. ZP scored a 26. :( This was of course no surprise to me - we knew that ZP had FAS before we traveled to Ukraine. The severity of his FAS, however, has been shocking and very hard for us to come to grips with. One thing that we also learned at the clinic that has been helpful but also pretty hard is a projected range for ZP's mental age in adulthood: 5-6. There is some literature that they gave us that has some charts in it (one of them is the differences between ADHD and FAS, which will be GREAT to have!), and one of the charts gives a projection of mental age based on IQ. It is right-on for where he is now (mental age of 2-3), and has been compiled with a ton of data from people with FAS, and we do feel like it's realistic. But it's not a very happy reality. You just can't help but wonder who ZP could have been if his mother hadn't drowned his opportunities in vodka.
One really sad thing that happened while we were at the clinic was that there was a couple there, with their infant son and his foster mom, who got a diagnosis of FAS that day. The mom was really upset, as you might imagine, and the whole thing was just very sad. Mom was crying and saying it is all her fault, and, well... You don't want to judge, but there just really aren't any two ways around this one. I'm sure she never intended to harm her baby, but certainly the decision to drink while pregnant was hers alone. So sad; baby boy was obviously small, had a feeding tube in his nose, a weak cry, etc. Fetal alcohol syndrome is a curious thing, and obviously genetics plays a role. I know people whose moms drank - and drank a lot - back in the day (you know, when medical docs advocated smoking cigarettes for good health - oh, those infallible medical professionals, eh?) and their kids are fine. And I'm talking family here, not the neighbors down the street; I know the mom drank regularly while pregnant, and I know the kids do NOT have FAS. Kind of like how not everyone who smokes gets lung cancer. There have been studies done on twins where the effect on each baby has not been the same, even though obviously both were being baked in an alcohol-steeped oven. Before we adopted ZP, I had even read of fraternal twins being born with one typical and one having FAS; I'm not so sure about this, however, because a diagnosis of FAS can be hard to obtain and the range of effect is so wide. There are adults with FAS who post on the FAS support groups sometimes, and they can write well and to read what they say you'd never know they have FAS (other than that is what they're posting about). Before we adopted ZP, I read all kinds of information about FAS being the number one cause of mental retardation (as a diagnosis) among children, but then everything I read from parents and on those same sites spoke of children having trouble with math, difficulty making friends, poor decision making skills, etc.
ZP, on the other hand, doesn't know what a friend is. He plays with L, and they are "friends" in that respect, but he doesn't get that she is a friend or that he should have friends or what the concept is. In many ways the severity of his disability is a blessing, because due to his lack of understanding he is shielded from much of the heartache of FAS. He doesn't realize he's different, so he doesn't feel hurt or distressed over his differences. I once heard a great description of the syndrome as the FAS brain is like a file cabinet with the files all over the floor; the person has the information but whether or not they can find the file is anyone's guess; some days they'll be able to find it, and other days there is simply no chance. "Files on the floor" is one of the things that we say to each other now to ward off frustration and remind ourselves that ZP's struggles are significant. There also seems to be a misunderstanding about the potential for improvement for someone with FAS, and I think for those of us who adopt children with FAS it may be even more misunderstood. There is - rightly so - much made of the myriad ways children suffer in orphanage settings. There is often not enough food, they are often small for their age, underweight, malnourished, and developmentally behind because of the learning and sensory deprivation of their environment. Often we see significant improvements in children's size and development once they are "home" from an orphanage; we have definitely seen those improvements in ZP. He was essentially nonverbal when we adopted him; he wore size 2T clothing at the age of 6, and the best fit in his waist was 12 month size; his tiny feet fit well into shoes that our son Z wore around 18 months. He was VERY hyper - and by very, I mean it was mentioned by every.single.person. who met him, saw him for evaluations, treated him for anything, by everyone in the ExEd program at school. Everyone. He threw things, he shouted, he stimmed; he was WILD. He had to be told things two or three or four times before he would listen and obey. And he never, ever slept through the night. Not once. Not ever. And he was NEVER quiet when he woke up. Never.
Now, he's been home almost two years; it will be two years on the day in July that L turns 3. He wears size 5T, and his waist size is best fit in 18 months instead of 12. He can sit for a time, he follows directions pretty well, and he has learned to do things we never thought he would, like ride a bike (with training wheels) and even a three-wheeled scooter. He has learned to answer yes/no questions, which was a huge help. He has learned to communicate many of his needs/wants - also very helpful. But ZP was in a good orphanage; he was well fed, and he was even cared about and well-cared for. In the two-year-old groupa he was in when we adopted him, they had music and art classes weekly. He has learned to match things, like pics of different modes of transportation, or shapes and colors. Sometimes he can even independently name shapes and colors. But not always, because remember, those files are on the floor. Some things he has not been able to learn in almost two years include answering why/how questions, such as "Why are you crying?" He cannot count things. He can recite numbers 1-10 in order, but he cannot correlate a number to an item; if I give him six peanut butter pretzel sandwich crackers for a snack and tell him to count them, he may stop at three or he may count to eights; he points at them (it's more like toward them, really) but only as an imitation of what he's seen done, not because he understands that each item is "one" thing to be counted. When he was still attending the public school system, they worked with him every day on identifying his name in print. When we pulled ZP out of the school system to educate him at home with his siblings, his teacher was so kind to send home things of his like the laminated letters of his name so that we could use those at home. So, for roughly seven months now, ZP has had someone each and every weekday sitting with him and helping him to put the letters of his name in the proper order; he cannot yet do it himself. He is able to do the Z, and the next letter, and that is usually it. When asked at the clinic to identify his own name when it was placed with Z's, he chose Z's name (their names are significantly different in length); we tried with L's name, which is very different from ZP's, and he chose wrong then as well.
I had a sort of sad moment this morning when doing school with L and ZP when it struck me that L, at not quite 3, knows all the letters of the alphabet and most of their corresponding sounds, but ZP does not and he most likely never will. Most days this is just life, but there are days like today when something hits and sticks, and I can't help but wonder who he would have been and what he could have done if he'd been allowed to grow and develop like he should have. My cousin asked me a short while ago if ZP wouldn't "get better," and in trying to explain it I came up with this: Alcohol is a teratogen, just like thalidomide. Babies born without arms because of thalidomide didn't grow arms later in life, and ZP isn't going to have neural pathways form in his brain now that didn't form in the womb when they should have. FAS is for life.
Perhaps hardest, for me, is the fact that it seems likely he will never attach to us. If you haven't adopted and don't spend any time in adoptive or special needs circles, you may not be familiar with terms like bonding and attachment, but they are a big focus of life as an adoptive parent. ZP has a very - and I mean VERY - hard time looking anyone in the eye. It is very nearly impossible for him to do (as a totally separate issue from his strabismus). B remarked once after E was born that it is amazing how E's instinct as a tiny new baby was to seek eye contact (as it's been with all five of our babies), but for ZP it is almost the opposite. After almost two years, he doesn't seek us out over anyone else, or recognize that we should hold a different level of significance for him than strangers. Last week at a church event, he went up to two different women he doesn't know and asked to sit on their laps. Sounds cute, but think about it: would you want your child walking up to people he or she doesn't know and asking to sit on their laps? Dangerous! This is a behavior that is often seen in children who've lived in orphanages, but generally after two years they've learned who their family is and some more appropriate behaviors. We have to keep a close eye on him at the park or he goes up to strangers and gets into their bags, or asks for their food. Zero boundaries in his mind, nothing to encourage him to choose us over strangers, other than familiarity. I never realized before we adopted ZP how much I get from my babies. Even as babies, they seek eye contact, they hug you, they reach for you, they want you, and they want only you. But ZP would not mind going home with anyone; he is not distressed at all to leave us to go anywhere or with anyone. It just is sad, and hard. I'm reminded of needing to experience hardship to know joy, and I feel like it is sad for him as well, because he'll never know the joy that loving someone brings.
ANYway, enough of all that. Here are a couple more pics from our big day out.
Their first date! ;) "Welcome to Moe's!" Those were the best Homewreckers we've ever had - we didn't get to eat til 3:00, hadn't eaten since about 6:30am, so we were reallllly hungry!
We had to go to Ikea and salivate over all the stuff we'd buy if we had any money. Lol
ZP was wound.up. at Ikea. We had to put EM in charge of keeping him tethered, which is pretty hilarious if you know EM. :p
Overall both of the kids behaved really well on this trip. It was a really long day that involved several hours in the car, and being examined by doctors and asked a lot of questions and put through a lot of paces, along with a bunch of totally new experiences. They really had a good day - K and I were most pleasantly surprised! :)
