Julie, his summer respite worker, was with him every single day last week, and this week she's gone on vacation the whole week...plus, just found out she has a funeral to go to this weekend, so there goes Friday and Saturday! The doorbell rang today when my mom came over for respite, and he got so excited thinking it was Julie. I wish there was a way to let him know when she'll be back - that she isn't gone for good. It must be frustrating and perplexing to have people just disappear with no idea if/when you'll see them again. And with school, he goes for months at a time, and then all of a sudden he's home all the time. I can't explain what summer vacation means to Ben, so there's no way Alex would understand. He'll likely not see his old teachers again, who have been with him the last two school years....but who can explain that to him? To have no real understanding of the world you live in. To have no effective means of communicating. I'd hit myself a lot too.
I keep forgetting to write down Alex's blood pressure. The other night it was 120-something over 80-something. Tonight it was a nice 108/60.
1 comment:
I'm still following everything here, just not commenting as much, but this post struck me. I would think he is super confused and especially frustrated that he cannot adequately express his feelings to you guys. He must feel very isolated and cut off from things.
I wish there was a way to help him release all those feelings ....
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