Tuesday, April 2, 2013

Spring Vacation

Sam is 8+years old now. I cannot imagine what It is like to have a child whom you could sit down at a table with his meal and expect that child to be able to feed himself. I cannot imagine how it is to have a two way conversation with my son or to send him into the other room to get something or to go to the bathroom. Absolutely everything Sam does requires assistance from another person. There are moments--sometimes up to 5 or 10 minutes where he is in his stander playing with his fans and switches while he listens to music. These come after we have physically set him up in the stander, of course, a process of several minutes.

Sam is improved this year, after many blessed interventions and alternative therapies. Even though I am deeply grateful for the help we have received to get these therapies and improvements in his schooling, this year has seen me grieving over my son's condition more than ever. Perhaps it is that we have several close friends who have first children much younger than Sam. These children are able to engage with their world so much more at 9 months or two years than he can at nearly 9. Perhaps it is that my husband and I are teaching Kung fu and yoga at a charter elementary with kids Sam's age. Not only do we get to experience where he could be if he had not lost circulation to his brain before he was born, we see many "perfect" kids whose parents ignore them or are too drunk or high to to have the conversations with them that I would like to have with my son. Whatever the reason, this year has been full of hard work and deep grieving for me.

As for Sam, he is severely frustrated. He wants to be quite physically active. He wants to do kids yoga videos with us. He wants to crawl and he wants to swim. Both of these take a lot of physical assistance from us (to the detriment of our backs and knees). He wants to bike, to run down the street, to engage in numerous activities that we can't understand or predict or figure out from his vocalizations and gestures. If we don't get it, he yells, cries or even bites. When I read posts from other parents of kids with special needs, biological or adoptive, who speak of "our little angel," I can only imagine that their children are either more independent, less frustrated or more passive. Don't get me wrong, I deeply love my boy. I enjoy taking him swimming and so forth. He can be quite the charmer (especially with others who seem to think he is always happy....mysterious, that). My body hurts and my mind is weeping. It is a long spring vacation. It is only Tuesday.