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Friday, February 1, 2013

The Not So Great Communication Evaluation

What a week!

Christian started back at school this week but not without hiccups.

In fact, out of the four days a week that he goes to school, he only attended twice. And I got calls from the school both days.

The first call was about him being upset and that I needed a release for him to go back to school. So we skipped Tuesday and Wednesday when he finally did go back to school, he still had some irritability during school. We are definitely not back to normal yet, almost three weeks later.

Oh, why didn't Christian go to school yesterday? Well, let's go there.

Yesterday was Christian's big augmentative communication evaluation. People from out of town were going to come to visit and we've waited over six months to do have this done.

So there are two days available, Wednesday and Thursday. Our OT who has known Christian the longest, knows him inside and out, needed to be at the eval, I thought. It was essential as far as I was concerned. But she had a conference on Thursday so when do you think the evaluators wanted to do the appointment? THURSDAY!!!

When they called to confirm I asked three things:

1) Can we change the time? Christian has school that day and he hasn't gone much this week. I'd like him to go.

2) Can we reschedule? I really don't think he's at his best right now. And I'd like him to be feeling 100% to get the best evaluation. I mean, he had surgery three weeks ago!

3) Can we change the day? My OT can't come that day. Can we please take a Wednesday slot?

The answers were No. No. And No.

If we rescheduled we couldn't be evaluated until May. So we went ahead with the evaluation.

So, yesterday, the very nice PT and OT from Flagstaff came for the evaluation.

Two of their eye gaze devices are malfunctioning. It takes at least an hour to set everything up and to try and work out glitches. They finally offer a third device that's an older model. So we start working with it.

I notice Christian isn't activating anything. I also notice he is looking at things on the screen. Why isn't he activating anything? So because I'm behind him and the eye gaze talker can read anybody's eyes, I start looking at the screen to activate it.

It's not working for me either.

So I tell the OT I don't think it's working. She tests it with her eyes, drops her head, and says she's sorry. It's not working either.

By that time, I was tired. Christian was tired. It was not what I thought this evaluation would look like. Christian did manage to muster up the energy to activate a few things once they got one of the eye gaze devices to work. But I just think about him working so hard to try and activate the screen and...nothing. How frustrating! Why would he want to participate after that?

The verdict was that right now I just want some choice buttons so we can work on those again. The other ones we used were on loan and we had to give them back. I want more buttons for him so we can work with those again. Then he'll be evaluated again in six months. For some reason I thought six month meant May. Nope. That's three months. Six months away is a long time when we've already had to wait! Am I being unreasonable here? It was their fault their stuff wasn't working, right? So the evaluation should be done ASAP. I don't want to be a crazy, hell raising parent, but, seriously? After you wouldn't let me simply reschedule to a reasonable date?

The silver lining here is that today we had an appointment with a fabulous new speech therapist. Christian showed her all of his skills and she was really excited about the things he could do. He reached for toys and activated them, he vocalized, and she was impressed and excited! It was like a big, huge, deep breath coming from that appointment. Speech therapy can be hard with Christian because a lot of speech therapists just don't know what to do with him. But she was excited to dive in and she said he had so many great skills to build on. She also works closely with his two other OTs so it's all around awesome!

I'm just happy Christian was in the mood to be social today and show her that he can communicate, he can make choices, and he has something to say. Of course, he does! He's my kid!

1 comment:

Jen said...

What a bummer and I'd say NOPE you are not be unreasonable at all! Things move so slowly in this world! Like molasses...or slower!!

What a rockstar Christian was in ST! That is so awesome! I am so happy he found a great match!

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