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Tuesday, April 28, 2009


I think maybe I am really getting depressed. It's probably lack of sleep, and just the daily grind which isn't just Janey, but many things. I am crying at the drop of a hat and just feel completely overwhelmed. I found this link which explains part of what I am feeling.

and has a lot of other mothers talking. If it were just Janey I think I could handle it, but it's also money issues, dealing with Freddy who isn't happy lately and can be very tough at times, making sure William gets the time he needs, worrying about the house, even worry about Schemer the cat who is not doing well. I really don't think most people know how hard life is feeling for me. I don't like to say how hard it is, that is probably why. I believe in being cheerful and making the best of things. I don't even know what would help at this point. Nothing would help, I don't think. No-one can watch Janey, no-one feels up to it and I don't blame them---it's too hard even for a whole school to watch her sometimes. Tony is at work so much of the time. I don't like to give in to self-pity this way. But this is my place to write, I guess, if others read it it's because they want to, so I will try not to feel guilty about even expressing my depression here. There is no-one to talk to who understands. People can say "Oh, I know how hard it is for you, I wish I could help" but none of them really can help. People have their own lives. Seeing a therapist is not going to help, unless they plan on coming here and giving me a break now and then, and on giving me some money to get us out of debt. Bills yesterday and a new $300 worth of medical bills just for Freddy's last illness, plus a hit of $70 at the pharmacy yesterday for his drugs. I think a lot of people would be stressed just by Freddy's asthma, and that doesn't even merit much thought, except to make sure he's okay each day. Just one extra thing.

Oh, well, have to get Janey to school.

Saturday, April 25, 2009

Trying things

We are trying hard with Janey to work out a strategy about the crying, which is just out of control and totally awful. I bought some M&Ms, and I tried all morning to catch her not crying, and give her one when she wasn't, and comment on how proud I was of her not crying. It's hard to even find a time when she isn't crying. We went to some lawn sales, and she held it together if Tony was in the car with her, but he tried to take her out at one, which she used to love, and she just went hysterical. Of course everyone talks to her and tries to help, but that just makes her madder, and it is so embarrassing and awful. It's why we take her out less and less. When she is home, we are going to try that if she cries, she has to go in a certain spot and just cry there. It's instinct to comfort her and that is what we have done for years and years, but it's not working and we are so frustrated we just have to try anything. For the first time ever, William said he was fed up with her and how she ruins everything. He has never once even gotten impatient with her before. I felt for him and told him I did understand how he could feel that way. I just hope things get better soon and this is not the start of a huge regression.

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.

Sunday, April 12, 2009

Tantrum and then talking

We had a strange time with Janey today. She was having a severe tantrum, mostly because we wouldn't let her watch her Maisy video when she wanted to, William was using the TV and he never gets a chance to, and we decided not to give in. She went completely crazy, banging her head, pounding her fist, screaming over and over "What the heck is going on?". We tried everything, and finally Tony said "Life must seem pretty awful for her at times" and he just started saying back to her "I know, what the heck IS going on? Why is everything like this? Why?" and really sympathizing with her. She stopped crying and looked at him hard, and then when all was quiet she started to talk in a way neither of us has ever ever heard her do---no repeated phrases, long sentences, like she really wanted to tell us something. It wasn't totally understandable (the words were, but the meaning wasn't). She said something like "That lady out on the street, she said GREEN, she talked about PINK, I got stuck, she said BLUE, she was telling me it, I was so stuck" things like that. I think maybe she was talking about when they tried to test her, or maybe tried ABA type things with her. We took it as her telling us she KNOWS those things, but gets stuck and can't say them. It was definately something about learning colors. Then she was very calm for quite a while, until she did get upset again later. It was very affecting to see.

Tuesday, April 7, 2009

Autism acceptance

Yesterday I had an experience which made me think a very lot. We went to a medical study at Mass General, and Janey was tested all day. These were IQ type tests, and also autism assessments. I felt like crying all day long, as I could tell Janey was "failing" badly. She refused to answer things I know she knows, she pretended not to understand anything said to her most of time, she wanted to just do laps around the room and chant things. After the day was over, I finally realized what bothered me most about the day. It wasn't Janey's "failings", it was the fact that I don't think anyone, me included, was appreciating what a wonderful kid she is. I wish she had been able to show her many amazing qualities---how she can sing so many songs, how she can melt people's hearts in a minute, how she is amazing and interesting and fun. She tried---she started the testing by going up to each person in the room in turn and hugging them and getting on their laps. It's something she does a lot, to connect with people, I think, to compensate in her way for her lack of being able to talk easily. She does what she can do. She enjoyed one of the tests, where they were having a pretend birthday party, and putting pretend candles in playdoh. She kept trying to go back to it all day, when the testing had moved on. I felt like crying later thinking about how she enjoyed that so much, and instead of enjoying it with her, we were hounding her to say what stupid pictures were, or make block designs or the like. When we got home, I spent hours just playing with her, hugging her, making her laugh at silly jokes only she and I understand, just looking at how beautiful and interesting she is.

I was prompted to do a search to see if there are other parents out there who just believe in acceptance of their kids. I found this website

I don't think it's exactly my philosophy, but it says a lot I like, especially how autism should not be viewed as a tragedy, and how they are very skeptical of the vaccine connection.

I have a lot to think about.