 Alyona, almost 14 |
Alyona, almost 14 |
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My name is Leslie. I have a teenage daughter, Alyona, who has just been diagnosed with Fetal Alcohol Syndrome (FAS). She was born about 1993, and was diagnosed in Feb. 2007. She is a sweet girl, but quite high maintenance. She has beautiful golden skin, and sleek black hair. She has small, Asian-type eyes. She is about 13 and a half right now. Her official orphanage diagnosis from her native country, Kazakhstan, was “mild mental deficiency”. That was it. Nothing more. This did not mean anything to my husband and I when we adopted her, because most of the kids had some false diagnosis…one almost never knew whether the diagnosis was true or false. She seemed ok to us, nothing obvious. Her caretaker always described her as the most “clever” in her group. Her big responsibility was keeping the key to their play room. We spent 6 weeks with her, and we could see that she was a strong, active girl with lots to share. We couldn’t figure out for the life of us WHY she was in the special needs orphanage. This was in Feb. 2004 (we have just celebrated our 3rd “Gotcha Day, BTW!) Well, we brought her home, and many things began to show their ugly heads. She was having a very difficult time keeping herself calm, was constantly yelling, or slamming doors, or tearing things up, or forgetting things. We passed this off as trying to transition to family life, as well as communication frustrations. Life for everyone was difficult, because a “wolf” had been brought into our home. Trying to teach her things, whether about daily life, or academics, seemed impossible; the minute after it seemed she had learned something, it was gone. The first year, though, brought a lot of growth…and I mean GROWTH. She shot up 6 inches in her first 5 months. She suffered massive growth pains in her bones as a result. It was quite impressive. Over time, as Alyona began to communicate in English better, she was able to tell me that her birth mother drank a lot. She did not know whether she drank during pregnancy, however. She also told me she had a tiny twin brother who died in early infancy. It would have been nice to have her evaluated much sooner, but we did not have the resources, plus we moved a lot with the military. Finally, we settled in a large university town a year ago, and we were able to get the kids on Medicaid. One of the first things the new physician did was refer us to the FAS clinic here in town. I was very thankful; finally, we would be able to see what was going on with our daughter! The FAS clinic told us it would be at least 9 months before being able to see us. So the wait began. In the meantime, we were able to go to other specialists for various testing. I went in trying to get a Sensory Processing Disorder diagnosis; we came out with an ADHD diagnosis, as well as probably mild mental retardation (exactly what the Kazakhstan doctor had given her…so, they’d been right). And two months later, we FINALLY went to the FAS clinic. After a long day of testing, the group of doctors gathered my husband and I together for a meeting, and gave the diagnosis of Fetal Alcohol Syndrome…as well as ADHD, Anxiety, possible Depression, probable Retardation, possible Post-Traumatic Stress Disorder, and the list goes on. They gave us recommendations, resources, explanations, etc. They were a wonderful group of doctors. In the meantime, life with Alyona goes on. We continue to cope with memory problems (“holes”), temper tantrums, illiteracy, very little to no grasp on concepts – especially ANYTHING with abstraction, such as time, and money, analogies, etc. One never knows exactly how old she is inside at any given time. Her use of expressive language is deceiving. There’s a scared little girl, about 6 to 8 years old, inside that womanly teenage body. And sometimes she is only 2. A very few other times she is 17 or so. She has hit a “3rd grade wall” academically, and in other ways, as well. She has never, in all her years, been able to move beyond that level of understanding. And she may never. It will be a while before we really know. She has a wonderful heart. She loves her family and her friends very much (as evidenced by her too-tight squeezes of affection, lol). She is a pretty good babysitter for her little sisters (although I would not leave her alone with someone else’s kids…not yet anyway). She is passionate about everything she wants to do, and this is one of her strengths. She loves music (but is absolutely tone deaf, and also has difficulty remembering how to play her piano and clarinet). She is a very good geometric artist, better than I could ever be. She makes awesome designs with her pencil, markers, and paints. She has learned how to do “stitching” – cross-stitch, quilting, and hand-sewing. Most of the time she does them from her extraordinary imagination. It has taught her patience, and is a great way she has learned to calm down. I am very proud of these achievements, which, once she was able to learn some patience, she picked up on the skills very quickly. Alyona is active in a Christian girls’ scouting program called American Heritage Girls, which teaches a lot of hands-on stuff, very applicable for her way of learning. Life is a challenge for her, and for us, and always will be. We don’t know what the future holds; will she able to live on her own, or keep a job? Who knows? But along the way, it makes for an interesting ride! 
Alyona with her little sisters Click here to read about Alyona's twin brother, Ivan |
