Search This Blog

Friday, April 24, 2009

Bad days

The last few days have been really awful with Janey. I am having a very hard time staying positive. It's been vacation week, so her routine is off, and we didn't have a lot planned---the boys really like to do nothing and relax during vacation which I can understand, as they work hard at school. Tony was home the first 3 weekdays, but again, we didn't do much, not even with him home, he needs to relax too and he was doing just that. Janey started having real fits, I mean worse than ever, and it's always been bad when she has a fit. But these were like 2-4 hour fits, just banging her feet and screaming and tensing all up and crying without stopping. Last night was the very worst, she screamed from 8pm until at least midnight. I think some of it was gas pains as she kept wanting her diaper changed. But a lot of it was just being upset about being upset. She repeats phrases like "It's not dark in here" which I have no idea what she means. I see no light at the end of the tunnel. I am tired all the time, so tired I could collapse. I am getting nothing done, I've practically given up on ebay and Amazon and things, I just don't have the energy. And we got a letter a few days ago saying basically the state is no longer going to offer any autism services, they have no money for it. So the little thing we were getting, free after school, might end in June, and the swimming. And no hope of any respite money ever, not that we were getting any. I think people like to think if you just look, there is all this help out there. That isn't true. Most of the money and foundations and things you hear about for autism are for research or for very focused things, and not for really helping everyday schmucks like us. I dread the summer. I dread most everything the future holds, I feel like. I have no help at all, and Janey has again today cried a huge part of the day. I try so hard to be cheery and nice and upbeat. I bought her some Fisher Price toys today, I had to make myself get out with her and we went to ToysRUs. I opened them a bit ago and of course they made her scream and cry. She might like them some day but for now it just feels like I threw the little money I have into the trash.

Just had to vent here where no-one really sees it much I don't think.

No comments: