Sam's Evaluation

Well, today, I spent 3 hours at the school for Sam's evaluation in preparation for his annual IEP review which will be held tomorrow. It was exhausting. I know it's important to give a thorough record of his past and present behaviors, learned skills, what he can and can't do, etc., but it is so difficult to go through this over and over again! He is such a sweet and wonderful little boy, who tries so hard, but you could tell today during the evaluations that he didn't really want to be there. I think he gets frusterated when expected to do things in a timely manner, if he can't. I know that the purpose behind the evaluations is to get a guage of what he can and can't do, but I think it is also difficult for a little person who is working so hard and knows that he can't quite get some of these things.

As John and I were talking later in the day, mostly in preparation for tomorrow, we came up with the comparison of a computer. So, I'm going to record it here, partly for us, and partly for anyone else out there who is trying to fully understand what Sam is dealing with. I had never heard of a "motor planning disorder" or a "processing disorder" before having Sam and facing his diagnosis of Apraxia. But, one way to think of it is with a computer. How many of us remember the really "old" days of DOS. In the beginning, we didn't just turn on a computer, have Windows Vista pop up with all the wonderful things it can automatically do for us. Remember when we had to type in the commands by hand? Okay, I admit I'm spoiled, I have very limited memory of the DOS days, but I think we all know, where we're going with this. Most of how a computer works, is automatic to us. We don't have to know each individual process. For most of us, when we speak and communicate with one another, it is automatic. We've done it a million times, we learned how to do the simple stuff beginning as an infant. We don't break down each step, each word, while taking in the other person's dialogue. Most of it is an automatic plan that we established long ago. For a child, like Sam, it is as if he is working in DOS. He can't automatically formulate those plans, therefore, he has to work through each and every process, one by one.

To add to that, because of the white matter abnormality and the low muscle tone, he has physical difficulties with those automatic steps. If you go to say the word "cat", you don't have to think "my tongue goes here and then moves to here, my jaw opens this wide and then closes, my breath strength needs to be stronger part way through the word", etc. We just say the word cat. For Sam, he not only struggles with those steps, but also having the physical capabilities of moving his tongue, holding and stabilizing his jaw, having strong enough breath sounds, etc. So, part of the struggle and the therapy, is to strengthen all of those components, and then work on teaching his brain to do automatically what comes so easy for most of us.

And the school wonders why we aren't happy with their therapist who thinks that Sam is not only "too lazy to speak" but also that just playing with him will eventually get him to speak.

Needless to say, it's been very complicated! I'll post tomorrow and let everyone know how things go. John will be going alone, as I was not able to find anyone available to watch the kids. I have a more in depth knowledge of Sam's disorder, but he is the one much better at presenting everything. Plus, we spent several hours today going through his evaluation that we had done just over a month ago, by a private speech therapist in Vegas. Wish us luck tomorrow. In a District with limited resources, I'm not sure what they will be able to do for us, but it should be an interesting meeting!