Monday, January 18, 2010

2010 - Here we come.






These are pictures of Ethan while we were visiting with his aunts and uncles and cousins over the holidays. He rarely sees them during the year, so I made a poster with all their pictures and names on it and we looked at it and discussed it before the big day. We were the last to arrive and within the first few minutes Ethan walked around the room full of people and pointed to each person while saying their name. He was proud and excited. And, as you can see from the pictures, he really had a good time. It looks like we've got a karaoke natural in the family!

Ethan missed almost 2 weeks of school following the holiday break. We're not sure why (since he can't tell us), but he spent about a week and a half not really sleeping. He'd sleep a little in the evening, then be up at 11 for the remainder of the night. It didn't make for a good day at school (for Ethan or his teachers), so we kept him home and endured the long cold days with our grumpy boy.

On January 1st, Ethan's cochlear implants suddenly stopped working. He had been playing in his swing and the hair on his head was standing up all over. We're sure it was static that shut them down. I went upstairs to get his back up processors and realized that we had problems with them as well. One was broken from a tantrum and the other contained outdated programming. Then we spent the next 11 days going back and forth with the company trying to get the mapping done and the processors delivered. By the time they arrived and we tried them on Ethan, too much time had passed. He seemed to be in severe discomfort, even though I turned the volume down to #1. After that experience, he has decided that he is incredibly fearful of wearing the processors, even though we have not turned them on. We had an audiology session that was over 2 hours of just trying to get one magnet on his head to run measurements. We failed.

Now we are at least getting him to agree to wear the processors without the batteries. So even though they aren't delivering any sound, he is willing to keep them both on his ears. This feels like a victory and we're hoping that he'll be more open to the next mapping session. I'm just grateful that he has sign language to communicate and that he's in a deaf school setting. He's very happy, with and without his hearing, and that's reason to be grateful as well.

He has also been refusing to take his supplements and we're noticing a huge improvement in his overall mood and behavior. I hope to reintroduce the supplements one by one and see if there is any connection here. There is unfortunately so much going on at once that it's difficult to tell what might be contributing to this new personality. It's like we're seeing glimpses of our little boy coming back to us. He has been so angry and aggressive for so long that we were starting to lose faith.

I've been feeling pretty overwhelmed. There have just been so many meetings and appointments and Ethan has been missing school on top of it all, not to mention Rich is starting to travel again after a 3 week break. Last week I started my ASL class, attended a FAC meeting at the hospital as well as an orientation at the autism clinic, took Ethan to 2 appointments at the hospital and attended his IEP meeting.

The IEP he has is really strong. I left that meeting just feeling stunned by what an amazing team we have assembled for him. He graduated from PT at school because he is now totally mobile within the school environment. His strengths seem to all revolve around academics while his weaknesses center on behavior, communication, and social interaction. I don't take his academic strengths for granted for a moment because I can't even imagine how hard it would be to work on those skills in addition to all the other areas. The fact is, he has been sight reading for over a year and now we're noticing him start to read phonetically. He actually sees words he doesn't recognize and starts sounding them out. It's unreal to watch. I'm so proud of him.

So we march onward with many concerns, but also with profound gratitude for who he is and who he's becoming.