Saturday, January 29, 2011

Beautiful Boy

It's so hard - I took these pictures ten minutes ago and now he's in the dining room with Mike, so sad and upset. We had a hard week this week and even though we started swimming on Thursday, it ended up pretty rough. He doesn't go to sleep until so late, and so he's so tired by the end of the week. I am afraid he is getting sick, too, although it's hard to say because his ... well, it's like this: Mike and I were saying, we have stress go right to our stomach and so does Anthony's.

I had a loooong discussion with some people at his school this week and came away very distressed. I do think that they are doing great work with Anthony, but these tantrums are really getting in the way of Anthony's life and success. I mean, they are affecting us all, as a family, but especially him. I just don't think that we are speaking the same language. They recently switched his MWF morning therapist, who is the only therapist who has been with him from the beginning. So Mike and I were sad, because we really liked her and Anthony really liked her and she seemed to be doing very well handling his issues with the tantrums. But the thing is, he can't just work with the same therapist all the time, because the whole idea is that he's successful with everyone, everywhere. So we were fine with it, just sad, especially because of how it's been for us during the last ten months or so.

The problem came when I talked to the scheduling person at his school, and she said how they had to switch Pam off his case, they switch them every four months or so. I made the mistake of having ears and a brain and I said, well, he's been with her since last August, and that's a lot longer than four months and she said since Anthony had been having a hard time when they would have switched they decided not to. And I was like, well, mmm, that doesn't make sense because almost FOUR four month periods have gone by and Anthony is still having a hard time so why now? (And I'll tell you why, to save us all some time - because it was most convenient for THEM to switch her at this time.). And if the girl had just said that, I would have been FINE with all of it, but of course people are so full of b.s. that she had to go on and on about how they were doing THIS and THAT and the OTHER thing, and she got all circular and confused with what story she was trying to tell. In my opinion, this is why you should just be forthright and honest in the world. It will make your life a lot easier if you don't have to constantly try to remember what story you're telling. It also will make me not hate you and not want to deal with you anymore.

So anyways, then I get an update from the school that this therapist is moving to the new center and congratulations, and all this. And it's the therapist that replaced Anthony's long-time therapist for MWF mornings. The therapist who looked me in the eye a month ago and said how *excited* she was to work with Anthony and how *great* it was all going to be. She probably said this at the same time that she was filling out her application for her new job, which is something I just don't understand. I guess there is some incredibly fast career track at the school and they have to move therapists up, up, up, before they get bored and take their wares elsewhere. Or whatever. So I was mad and I called the scheduling girl, with whom I am no longer going to deal, because I am always thisclose to losing my mind anyway and I just can't drive myself crazier by dealing with the likes of her. Then I talked to the Executive Director and we got it all straightened out, I guess, but we were on the phone for over an hour, going round and round, both thinking we're right and - just - ugh. They think I'm some sort of crazy bitch, and they've been doing things all this time, I think, doing things just to keep me quiet and not because it's the right thing or because it will help Anthony. And I haven't been asking for crazy things - I've just been saying that THIS is the way Anthony's life is right now and we would appreciate some consistency. Then it turned out that the Director maybe didn't know anything about Anthony's tantrums and I know she doesn't have to but it's so strange, because it's such a giant part of our lives, really running our lives, and I feel like no one cares about helping us END them. It's beyond frustrating, it is downright depressing and it is the hardest thing I have ever done, and I assume Mike too, to just keep soldiering on and asking and begging for help and not being surprised or hurt when someone says, sorry, nope! We have nothing actual for you, but we will keep gathering data on it. And I think, gathering data? It seems like soaking dishes to me. Soaking dishes that do not need to be soaked, but you put them in the sink in water because you don't feel like doing the dishes right then. I know that this is not how it is, necessarily, but it's how it feels.

Anthony was so tired yesterday afternoon, he had a very, very hard time during his home therapy. But then he was up until 11:45, then Veronica was up at 12:30 until 2:00 and then Maria was up before 6:00. I do not know how we are supposed to do all this crap that we have to do to keep everyone safe and (relatively speaking) happy on this little sleep. I just don't know, it's terrifying.

Mike took them to get donuts today, and we all went to Costco, though, and that went fine. He is mad now and probably will stay rough through bedtime and then hopefully, if GOD IS A MERCIFUL GOD, he will just go to sleep kind of early tonight and get back on track. We'll see, though. I'm sure mine is not to reason why and there is some freaking reason that we are going through all this.

So. As is happening a lot lately, this is ending on kind of a bummer. But don't be bummed, think of Thursday night, when Anthony was so happy, in the pool! "Pool!", he said, when we got there. He kicked and tried to drink up all the water, and charmed his teacher and the Aquatics director at the Y. My sister Laura, who deserves a big shout out, came over and watched the girls in the time period where I had to leave to take Anthony to the Y and Mike was coming home from work. She is also babysitting tonight. Anyways, it's fun to do something with just one of all these kids, but for me, especially Anthony. He seems very aware and grateful that it's just us, like it used to be.

1 comment:

Anonymous said...

AAAGGGGGHHHHHas;dkfljsf but DATA doesn't MEAN anything if you don't DO anything with it, so that's BULLSHIT. I'm not going to sign my name here and I apologize for the language, but I'm sure if you can think of someone who has very strong feelings about that place and poor Anthony, and the way it seems like he's never been a *problem* there so they've never MADE him THEIR problem, so to speak, you'll know exactly who this is coming from. This is beyond upsetting, and I am so, so sorry. They should be doing so much more to at least try to help you guys. To help HIM.