Since I wrote our last update I have had a few people contact me privately with their concerns about Micaiah. It has been a hard path for us, and it seems in my description I made it sound as though he is withdrawn or even depressed or “closed off”. You might picture a teenager who has been traumatized and is sitting unresponsive and staring at walls. This was not an accurate description and I apologize. I went back and read over what I wrote again and I can see how readers might misunderstand. I would like to clarify:
Firstly, and most importantly, Micaiah is not unhappy. I feel it is very important for people to understand this. On the contrary, if you visited him, you would perceive him to be quite content. Ironically, he may be the most comfortable he has been in many years, possibly his whole life. All his needs are being amply met, everyone he meets is overly compliant and helpful and kind to him, and for once in his life, his physical sufferings have been alleviated. He plays around with the nurses and laughs quite a lot. Anything he wants or asks for, he pretty much gets.
As for communication, we do, also, have several friends who speak Ukrainian and have helped in translating with him. We have even had a couple of doctors who have come by who know Russian or Ukrainian and have chatted with him. They all tell us that he does not have a whole lot to say, and it is all at a very elementary level. He has no questions or curiosity about his condition, and when given opportunity, always says that he is very happy and doesn’t need anything.
When I described how he only showed interest in his music, it seemed to paint a picture of a sullen or withdrawn teenage boy who is focusing only on music. Picture, instead, a much younger boy who is quite content with his music toy, and simply intellectually has not much interest in anything else. He does love to play around with the nurses, grabbing their badges, pulling their hair, trying to tickle them when they are working on him, and laughing hysterically when they ask him to cooperate and he doesn’t. He laughs a lot. He has learned some of the nurses’ names, and my husband has worked very hard with him to teach him the English numbers from a deck of cards, and how to use a Pez dispenser. He likes to play with a Nerf gun he was given, pretending to shoot at things. If he shoots at my husband and my husband pretends to die, he laughs hysterically. He has no interest in creative toys like Lego sets or puzzles. He will look at pictures on his tablet, but not much interest in the TV in his room. His attention span is short. He has no interest at all in drawing, coloring, or writing. While we were surprised in the Ukraine to find out he could phonetically read Ukrainian, we have slowly come to realize he rarely understands the words that he reads out. It’s almost as if we were reading a word phonetically in a different language; we might make the sounds, but not connect what the word means. So while I had hoped we could communicate some through his ability to read, that has been a dead end. We have had limited success trying to communicate through gestures and other means; he mostly just smiles or laughs, or parrots back what we say to him.
What we are dealing with here is not unhappiness. He is not “shut down” and not by any means anxious. He did show anxiety in the Ukraine when traveling by car for the first time, and by plane. But he does not show any signs of being anxious now. He is simply a boy who has some significant mental challenges, perhaps coupled with some institutional autism, a great deal of immaturity, and obvious institutional behaviors and delays. My husband makes visits to the hospital for at least three to four hours every day, and the rest of us visit when we can (although we have all had the flu here and have not been able to go at times). My husband spends long hours working with him, and has established some good rapport and bonding. When my husband came home at 1 am last night I asked him if he thought Micaiah was either depressed or anxious and he laughed out loud. He told me if anything, he displays the mind and emotions of a “happy toddler”.
I hope that this clarifies things some and sets some people’s mind at ease who may have misunderstood him to be uncomfortable or unhappy in any way. Perhaps I can try to get some video at our next visit to better share his situation with you.