September 10, 2006
September 10, 2006 | Updates
Another good week of school. I dropped Samuel off at school Monday morning and as I walked out of the school, I thought to myself, “Teresa, you have lost your mind!” And I felt that way. But when I came back a few hours later, Samuel was sound asleep and doing just fine. They said he had a few crying moments, but he got over them and did great. He just fell asleep the last 1/2 hour.
Tuesday, I went with Samuel because the augmentative team was coming to evaluate him. They are a team that will do all they can to get Samuel communicating with us. But they began by trying out about 3 different chairs for Samuel to get him in a good position for participating during class. After all that, he fell fast asleep. I explained to them that I am beginning to believe that is how Samuel deals with being over handled or stimulated. He goes to sleep. They agreed that could be the case and decided they were OK with it when I explained to them the other option would be for him to scream at them :)!
I do believe this is a tactic of Samuel’s, however. Because if he is repositioned or “bothered” too much by his therapists, he will just close his eyes and take a nap. But he doesn’t do it with me. I have a terrible time getting him to sleep. So I know he could stay awake through therapy if he wanted to. He just doesn’t always want to.
Anyway, the team talked to me about several options with Samuel and for now, we will work on teaching him to use the computer with either his head, his hands or his feet. And we will start having him make choices with his eyes by gazing at the things he wants. I know he already has determined that a great way to communicate is with his smile. And he uses that to get more of the things he likes. He also is getting good with his eye gaze and will choose between 2 movies or 2 toys all day long. So we will work on those things and maybe next time the team comes, Samuel won’t sleep through it!
Horseback riding was fun again and his Aunt Kaylee rode with him this time. Again, he fell fast asleep during the ride, but woke up a while later and was so vocal. He is always more vocal after horseback riding - like he is trying to tell us all about it.
Not much more happened this week. Samuel’s myoclonic jerks are still bad after he wakes up for about 10 minutes. He really hates them and so do I. And he has been throwing up more and just overall seems to have a really difficult time keeping things down. I weighed him a few days ago and he is back down to 27 lbs which is a real bummer since I had him up to 28.5 lbs. So I’m working on getting him into the GI clinic to see what ideas they have to make things better.
We’re also working on Samuel’s wheelchair. We found out we have to go through a different provider since the original one we chose was out of network. The insurance said we would have to pay for 1/2 the chair if we used that provider. Out of curiosity, I asked how much the chair cost and they said approx. $6,000. A very astounded “GOOD HECK!” just popped out of my mouth when I heard that! And the insurance lady asked me if I was expecting it to be more. MORE! Wow, the health care system is really messed up if you can buy a car for the same price as a manual wheelchair. But don’t get me started on that!
We have a pump refill appointment this week, so we’ll be asking a bunch of questions we’ve been saving up while we’re there. And our therapies run out on the 15th and then we’ll have to go to outpatient. Hopefully, that will all work out well.I’ve been struggling a little the past few days with some things. We have been out of the house a lot more lately than we have in the past year. And I think I’m finding it hard to “fit in.” There are a few issues. First, I’ve noticed a lot lately how much Samuel defines me. Whenever I’m at a doctor’s office or even at the school, and someone asks me my child’s name, Samuel’s name always slips out - even if they are asking about one of the other kids. And Samuel is always, always on my mind.
It’s not that I don’t love all my kids because I absolutely do. It’s just that Samuel has been such a huge focus for the past 14 months, that I can’t ever seem to get him out of my mind. He is always at the forefront of it. And so much that I’ve learned and that I believe has come from this experience with him. So I find myself always talking about him and always referring to him and the experiences with him. I’ve really had to step back and not say a lot of what I want to say because I’m afraid I’m becoming annoying to my other kids and to people who have heard more than they would like about it. I really can’t explain it, but I’m having a hard time being “normal” again, I guess.
And then there’s the issue of finding Samuel’s “place” in this world. Most people don’t see Samuel as we do. We are with him enough, that we know his personality. We know he’s in there. We know he “gets it.” And I can’t expect others to know that when they meet him or see him. I mean, family and close friends and even many ward members seem to understand he’s in there. But the rest of the world doesn’t see it. And I guess the thing that makes me sad is that other children don’t see it. Other kids are usually interested in Samuel for a few minutes because he’s different. But pretty quickly, he becomes boring. And then they’re off to do their own thing. I can’t blame them. Any kid would be that way, including Samuel if he was still normal. But it tears at my heartstrings because Samuel wants to play with them and can’t because he can’t hold their attention.
Well, I’m just rambling now. But this is just the stage we’re in, I guess. And I’m sure we’ll find our place soon enough. It’s just something I hadn’t expected and I’m trying to work through. But I’m sure I’m meant to learn something from it :).
Keep praying for our little guy. We love him so much and know you do too!
Love,
The Jewkes
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