Tuesday, August 11, 2009

Sweet little Micah man

We watched 20/20 last Friday night which was about medical miracles. The one segment we were waiting to see was toward the end, about a 13 year old girl with autism who has learned to communicate using a computer. She cannot speak but began typing a few words one day, which shocked her parents and made them realize she wasn’t as intellectually impaired as they thought.

It was an encouraging story, though quite rare for someone with autism to be able to communicate like that. Of course, it made me think about Micah and wonder if he is never able to speak, will he be able to communicate in some fashion through sign language, or as advanced as typing on a computer? He communicates now by taking our hand or arm to try and show us what he wants or raises his voice in frustration if we can’t figure it out. He knows a few signs, and we are trying to be proactive in introducing new signs. We are only doing one a week, as suggested by his speech therapist so that we don’t overwhelm him. We try and use the few we know in communication with him even if he is not yet using the signs back to us.He was just recently approved to get an augmented speech device, which is basically a small computer that he will take everywhere. It has numerous icons like food, drink, etc. and once he learns to use it, the idea is for him to push the icon and it speaks whatever the picture is. It will take about 2 months to come in. We are thankful for this and hope that he will be able to use it and not merely push buttons to hear the noises.

I have to say, not being able to communicate with him well is one of the hardest things about Micah having Tuberous Sclerosis. Wayne and I often take turn playing with the boys in separate rooms in the evening since Micah doesn’t want Gabriel near him. I was sitting in his room reading to him and started to get sad, wondering what life will be like for him as the years go by. I really don’t allow myself to think about it too much, because it’s too hard. I began to cry as I imagined what his future might hold. I also started to feel compassion for him. I get frustrated with him because he still doesn’t want Gabriel near, and start thinking “C’mon already, it’s been 13 months!!” but then I have to remind myself that he can’t help it.

We pray for him all the time, asking God to give him speech and asking God to heal him totally, believing that He could do it in an instant if he so chose. I don’t mean to be pessimistic when I say imagining his future is too hard. For Wayne and myself, it’s almost like tug of war with living between hope/faith and reality. Yes, God can do miracles, but we also have to consider that he might not. Yet, for now I think it’s best to take it one day at a time and rejoice in the small bits of progress we see, like him starting to do some of the motions for songs and sit still during center time at his school. His smile and laughter give a lot of people joy, including us.