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Sunday, March 28, 2010

Win-win situation

Freddy has been very, very eager to get a new X-Box since his old one broke a month or so back. It's not really in our budget, but we came up with a deal. We will get him one, and he will pay for it by playing with Janey an hour a day for 40 days---assuming that his pay is $10 an hour, that will pay for it. He started today, and he is amazing. He's getting her to do things I've never heard her do. With M&M rewards, he got her to spell the last part of her name---He said J and she said A-N-E. They played a lot of ball, and he dressed her, read her a book, made her chocolate milk---it's great. We wrote up a formal contract we all signed and William witnessed, giving the exact terms, as he has occasionally been known to promise a lot to get something and not totally follow through, but we will have the power to take away the console if he doesn't keep up his side of the bargain. I think she responds to him differently than she does to us---he's more like a peer and she doesn't feel like it's schoolwork. I love hearing him work with her. It's amazing.

Saturday, March 20, 2010

Crying Day

Janey is having one of her famous cry all day days. We don't know why. We've tried all our tricks---feeding her a lot, giving her a bath, me just holding her, etc. It doesn't help that I've been sick for days, and at one point when I was holding her and she was starting to calm down, I started coughing my head off and then throwing up. So that didn't exactly work. Tony has taken her now in the car to pick up Freddy from a party he is at. We are giving a friend of his a ride home, and I guess the friend will get a baptism in fire in autism education. It's an awful helpless feeling when she get like this, for her I am sure and for us. She might be getting sick like I am, but she has no way of telling us that. It's one of those days I don't feel particularly equal to this challenge. I just want to rest and get better, but I can't. William was trying to complete an important application for a summer program, and he could barely hear himself think. It's one of those days I hate all those stupid saying like God doesn't give you more than you can handle. If God handed this out, I think He might want to rethink His method of judging what people can handle. Or the Holland story---if I ever book a passage to France or England or Italy, I better end up there and not in Holland. Holland might be fine, but at this point, I need a vacation and it better be to where I want it to be (if you don't know the Holland story, look up Welcome to Holland anyplace on the internet and you will find the sappy tale) I get feeling guilty, like I don't want Janey to be who she is. But that's not it. I don't think anyone wants to be sad and voiceless. I want her to have a fair shot at life. I want her to be able to tell me why she's sad, and let me try to fix it. And I want the rest of us to be able to live a life where we are not on eggshells all the time, and where there is a day in sight when we can have kids that are grown up and on their own. This is a lifetime thing. It's never going to happen. So some way or another, I have to make the best of it, for all of us. And most days, I think I can, but right now, I am not sure.

Friday, March 19, 2010

Look game

I've been playing a new little game with Janey, where I look at her eyes and saying "Looking!" and see how long I can get her to keep eye contact going. She seems to enjoy it, and is pretty good at it. It's kind of like a staring contest. She likes a lot of little games we play like that. Another one she's always liked is the foot clapping game, where I clap her feet together like hands and sing a song. Lately I've been singing "Surrey with the Fringe on Top" and she asked for the game now by saying "chicks and ducks?" She likes to be active so much, and I'm realizing more likes to just be close to me, so I'm trying to spend a lot more time just holding her and playing with her kind of like you would with a baby, silly little games. Maybe she just now has reached the stage where she's ready for that, but it can get dangerous as she's getting pretty big, and likes to bonk heads!

This spring she developed a huge attachment to a certain coat of hers. It's very soft and plush, and she called it her "flower coat" or "nature coat" as it had flowers on it. She would get very anxious in the mornings when it got close to time for coat on, worried I would put on another coat. I had to finally hide it for a while, as it's really too heavy for this time of year. They said at school she would go get it and put it on, too. I think it was like a blanket to her. It's another area where she is now doing something like is like what about 18 month olds do. It's interesting to see the stages progress slowly like that, at least when they last and don't fade away and never come back, as they did the first time around.

She is looking so big now---she's really passed the point of looking like a preschooler and looks like a little schoolgirl. Very few people in public seem to mistake her for "normal" anymore, I've noticed. It's obvious enough seeing her behavior that she's got something going on. I guess in a tiny way I'm glad of that---maybe it would be harder if she seemed perfectly normal and then did something bizarre, but also I am sure it affects how people react to her, and she is probably getting less people talking to her in a "normal" way.

There has been a lot of crying lately---not the all day crying that's so hard to take, but off and on crying spells that get punctuated by a loud, piercing scream. That's tough. It's still often when she's hungry or tired, and just doesn't seem to know that is what she feels. Actually, she does pretty well with tired, but hungry seems to elude her, and we have to be very careful to keep the food coming and avoid that kind of meltdown.

Wednesday, March 10, 2010

Another year of kindergarten

Janey's teachers talked to me yesterday about having Janey repeat kindergarten. I had figured she would repeat a grade or two at some point, but was kind of thinking it would be later on, but it makes a lot of sense to do it now. The only thing that really got me was that she won't be with the same kids. I really, really love some of the kids in her class. They are used to her and good to her, and it's a big part of why I like inclusion. But I know it's a huge jump to 1st grade. If Janey wasn't making any progress at all, I would figure the grade didn't matter and would say I wanted her just to stay with her friends, but lately she seems to be making progress. She is recognizing at least the letter "A", is sometimes showing she knows the difference between 1 and 2, she has been very happy this last month, and so it all makes sense. I love her teachers and I feel happy they want to have her in their class again, and are not in a hurry to move her along. So I agreed to have her repeat. There is a tiny part of me which makes no sense but still feels upset she is "repeating a grade". It's stupid because obviously she is not really going to be doing the same work as the other kids, and she won't understand the difference and indeed will be happy to be in a familiar place, but I have to be honest and say it feels a little sad somehow. But I won't have to worry over the summer about how the next year will go.

Monday, March 1, 2010

Sign Language and some complaining

We've been trying a little to teach Janey some signs. I resisted it for years, because I think I felt since she COULD talk verbally, that is all we should encourage. But the verbal talking is not making a huge amount of progress, and she was signing "more" all the time after learning it at school. I found a good web site that shows little videos of each sign. I think it's something a lot of people know, so it should be easier to co-ordinate with school than some things. We'll see how it goes.

I'm very happy to have met another woman with an autistic daughter through this blog---thanks, Michelle! It's so wonderful to talk to someone else that has been through a lot of this!

I'm also happy that Janey is starting music therapy at school. It took a long time to get it started, but I really like the therapist and I think it will be helpful.

To be less positive for a minute, I've been thinking about how much more parents with tough kids like Janey need support and breaks and time off, and how much harder it is to get that than it would be for parents of "normal" kids. It's an example of something that should be MORE available being actually LESS available. If Janey were mainstream, I could easily find a day camp, swimming lessons, dance lessons, music lessons, day care, etc. Paying for them might be an issue, but FINDING them wouldn't be. But as things are, it's so very hard to find such classes or care, and if I do find them, they cost much more than they otherwise would. I don't think people sometimes realize how hard just a regular day is with Janey. Imagine taking care of a child that does the kind of things an 18 month old would do, so you have to constantly watch them, but they have the physical abilities of a 5 year old, so it's even more dangerous. Then imagine you have no reliable way to talk to them, and that they are prone to suddenly have a tantrum or start crying at any moment, and you have no idea why most of the time. Then imagine that that is your life, all the time, and there is almost never a minute off. And imagine you love that child more than anything on earth, and want the best for them, but half the time you are too darn worn out to do all you think you should for them. And imagine you have 2 other children, and a house to take care of, and bills to pay. That's my life. And I like my life, most of the time, but I just wish I could get a break once in a while. And I am luckier than most, with a very supportive husband and good friends. Okay, enough complaining.