yesterday, while at church, we were given some chocolate cheerios by one of Nathan's former primary teachers. Isaac was the only kid with me at the time, and didn't act interested/grateful for them at all. When we got home, Nathan was extremely interested and asked to have some. I told him that if he could guess who game them to us, I would allow him to have some. He went through 3 or 4 names without hitting it and started to become discouraged. He ran out of names. I then asked Isaac......"Isie, can you tell Nate who gave us the cheerious" and Isaac said in his very cute, inflected voice (just as a normal kid/adult would have said it with a big smile as if to say "you should'a knew this") "Sister Matney". He has come a long way in social interaction.
The other day, I engaged Isaac with a game called Zingo. He really liked the game, but we hadn't played it in some time - not sure why not.
Anyway, I had to bribe him to play, because he was too busy stimming (stimming has been quite a distraction for him lately) to be bothered with a game that required interaction with another person. In the past, he would play, but he was never really "in it". He never cared who won the game or how close they were to winning. It just never crossed his mind. Well, this time he did care. He was very involved - being very excited as he got closer to getting bingo, counting down the number of tiles needed before beating me, as well as counting the number of tiles he had on the game. At the end, he got so into the game, I found myself hoping he would get the last piece just to avoid a melt-down (in addition to hoping for his success). He did get the last piece and beat me - he was so excited about beating me! He went and told his mother the great news which I was thrilled about. He really has made a lot of great progress and I fear that has been left out of the picture more often than not.
He did have a major struggle/meltdown at church and one of his teachers had "the look", the look I was fearful of for a long time. The look that says "I don't get your kids" and "I'm really sick of him, I don't care what his diagnosis is". Anyway, he told me "Isaac had an extremely bad day today" which I was already aware of having left EQ a few minutes early b/c I could hear him screaming in the halls - I'm not talking gentle screaming, but the kind of screaming that shouldn't be done ANYWHERE, especially not church. We need to work on helping him with transitions/change. He still struggles mightily with that.
Also, this week, Anne will be taking him to Colorado Children's for an EEG (he'll receive an MRI later). I will be absent from all of it which I feel terrible about. To help out somehow, I will be staying up with him this evening until midnight and getting up with him @ 4am. He then must stay awake until noon when the EEG will take place.
Anyway, we're looking forward to getting some answers about some of his regression (incontinence/loss of speech). It would be a blessing to learn more about his disease and how we could treat it or at least understand him a little more.
No comments:
Post a Comment