We are three weeks into the home program and it has been up and down. We have to do exercises two times a day and it takes about 20 minutes each time. He has to listen to certain music and wear special glasses three times a day for 20 minutes each time and he also has an 20 minute computer program that he should do at least 5 times a week. Plus he has supplements that need to be taken at certain times and certain ways. Add on homework and baseball it just becomes a lot. We also have started him on a gluten free diet and tomorrow I find out if there is anything else we need to cut out. It's a lot on him, a lot on me and a lot Chris and his brothers who have to be flexible. At first he was all excited and very willing, but now it is a lot of fighting and negotiating. I can only imagine the frustration he is feeling and how he can feel overwhelmed at times plus discouraged that he has to do more work while his brothers play. We have implemented a rewards chart for him and it works well and this week we are earning reward points for having a good attitude for doing what he is asked. I have to be on top of all that needs to be done at all times and I try to stick to a schedule each day so we can fit it all in, plus give him time to play afterschool. Most of my energy has gone to him and all we need to do while also trying to juggle the other three kids and their needs. As Chris said last night I am very emotional right now. He's right and I am tired, Noah's tired and I know that Noah hates that I constantly have him on a schedule. I don't want to take away his play time, I don't want to always force him to do something he doesn't want to do, I don't want to wake him up at 6am with a supplement that he has to take, but I keep reminding myself that this is an intense 4 months and then we/he won't have to do this forever. In about a week he will have to start going to the center three times a week for therapy and that will change everything up again. Despite all the frustration I have been feeling I have to be thankful that we don't have to go through near as much as so many other families. We will keep you all updated!
Tuesday, February 21, 2012
Update on Noah
We are three weeks into the home program and it has been up and down. We have to do exercises two times a day and it takes about 20 minutes each time. He has to listen to certain music and wear special glasses three times a day for 20 minutes each time and he also has an 20 minute computer program that he should do at least 5 times a week. Plus he has supplements that need to be taken at certain times and certain ways. Add on homework and baseball it just becomes a lot. We also have started him on a gluten free diet and tomorrow I find out if there is anything else we need to cut out. It's a lot on him, a lot on me and a lot Chris and his brothers who have to be flexible. At first he was all excited and very willing, but now it is a lot of fighting and negotiating. I can only imagine the frustration he is feeling and how he can feel overwhelmed at times plus discouraged that he has to do more work while his brothers play. We have implemented a rewards chart for him and it works well and this week we are earning reward points for having a good attitude for doing what he is asked. I have to be on top of all that needs to be done at all times and I try to stick to a schedule each day so we can fit it all in, plus give him time to play afterschool. Most of my energy has gone to him and all we need to do while also trying to juggle the other three kids and their needs. As Chris said last night I am very emotional right now. He's right and I am tired, Noah's tired and I know that Noah hates that I constantly have him on a schedule. I don't want to take away his play time, I don't want to always force him to do something he doesn't want to do, I don't want to wake him up at 6am with a supplement that he has to take, but I keep reminding myself that this is an intense 4 months and then we/he won't have to do this forever. In about a week he will have to start going to the center three times a week for therapy and that will change everything up again. Despite all the frustration I have been feeling I have to be thankful that we don't have to go through near as much as so many other families. We will keep you all updated!
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