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Monday, February 14, 2011


Lately I've been very, very tired. There could be a lot of reasons---my thyroid medication might need upping, I might be anemic, I might be getting sick---but I think the real reason is I'm constantly on guard. I am always tense to some extent, waiting to see what Janey does next. Things can seem perfectly calm, she can be in the next room singing away to herself and happy as can be, and I can look at her and see she's covered with what she found in her pullup, or tearing all the stuffing out of the couch, or pouring out a bottle of shampoo or lotion, or eating some paper, or taking off all her clothes, or opening the fridge and trying to eat ketchup or mayonaisse or crushed tomatoes or whole garlic cloves, or using my permanent marker to write on things, or sometime, just staring into space. You never know. And I am, if I do say so myself, a very attentive parent. I used to have people comment about the boys that they never got even scraped knees, as I didn't let them loose enough for that to happen. But the most attentive mother on earth cannot keep her eyes every single second on one child. And I am getting worn down by trying. Even when Janey is at school, I am on edge---not that they call me or that I worry she isn't being cared for, as they love her and care for her as well as I do if not better---still, I worry about how she is doing---is she having a tough day? Is she crying? Is she trying to bite people (which she hasn't done in a while, but I worry she will start again) Has she wet herself and is resisting being changed? Is she OKAY?

And all this Janey watching and worrying has to happen along with the rest of my life. I need to be there for two teenage boys---to listen to them, make sure they have clean clothes to wear, make sure they have good food to eat, keep the house in a minimal state of cleanliness, do dishes, pay bills, drive people places, work at my business when I can to get the little extra bit of money we so much need....and I'm tired. I take five medications---my health isn't perfect, but I don't even have time to think about that. What I do, whether I have time for it or not, is fall asleep almost every day during the day. When Janey is at school, whether I have slept well at night or not, I put the phone right next to me and nap. I try not to, as it uses up the little bit of time I have to myself, but I have to. I literally can't resist.

This is a very whiny post. I don't want to sound like a complainer. I am luckier than many parents of autistic children---I have a supportive husband and my other children are old enough to help out. So why am I writing this? I guess because I want to support others with autistic kids---you are not alone. It's very, very, very, very hard. Take care of yourself. Make sure you get the rest, the breaks, the fun that you need. It's very hard to do, but I think we all need to try. This winter has driven me to near a breaking point, and I think my body is telling me that. If you know someone with an autistic child, help them out if you can. Offer to watch their child for an hour or two, if you feel you can. Or if you don't feel you can, which is quite understandable, try to get them out of the house while their significant other or another friend watches the child. Let them vent if they need to, but try to also give them a good time that has nothing to do with parenting or autism. If they can't get away, figure out what they can do for fun that keeps them at home. If they are into Facebook, see if they play some game on there you could play with them. If they watch a TV show, maybe come over and watch it with them, or even watch it at home so you can talk to them about it. Or just call them up and listen, and encourage them to just talk about light fun things too---celebrity gossip, the weather, etc---if they want to. But if they just need to vent about their life, listen and sympathize. Even if you can't do a thing to help, it helps in itself just to say you can see how hard it is. Maybe give them a chance to do something for YOU. One of the things that wears at me is how little I feel I can help others. I can't get out to volunteer, I can't make fancy snacks for Janey to take to school, I can't watch other kids much. So when someone asks for a ride, or asks me to write a letter in support of something, or asks me to help in some way I actually can, it's a boost.

Too long, I'm rambled here. But thanks for reading, if you are. That helps too!

Tuesday, February 8, 2011

3 good, 3 not so good


1. This morning, Janey brought me all the rice pudding from the fridge. After she had one, I told her to put the rest back in the fridge and close the door, and SHE DID---perfectly!

2. Just now, she wanted a video, and after demanding "I want Angelina Ballerina!", she paused and said "Please?"

3. Last night, she picked up a toy cell phone and said "Hello?" in a perfect imitation of how I'd say it---the first time I've seen pretend play from her in ages.


1. I took my eyes off Janey for a minute while trying to get some laundry folded yesterday. She was in the next room, in the corner of my eye, but I didn't notice she had found a jar of Vaseline until she had spread it all over herself, the floor and my bed.

2. Janey has developed a severe taste for paper. We have to be constantly vigilant, or she will tear off pieces of it and eat them.

3. No progress in toilet training. Janey will wear underpants all day at school, but despite them taking her to the potty over and over, she holds it all and wets herself on the way home.

And so it goes....

Friday, February 4, 2011

Long Day

I kept Janey home today---I'm not a fan of driving when the streets are like tunnels from all the snow, and my son called and said he still wasn't at school after over 3 hours in the bus. So I thought we'd have a day at home. Janey was fairly cheerful, but I am half out of my mind. The tough issue today was toileting. I am trying hard to put Janey in underwear during the day, not because she is trained, but just to give her an idea when she's wet, and because she only pees about twice a day, so it saves on expensive pullups (which are really GoodNights type things now, she's too big for pullups). But today she CONSTANTLY took her pants off, and stained herself a little, and got her hands dirty, and rubbed her hands on things around the house, and so on (trying to give you the picture without being over vivid here). I spend the whole day putting her pants back on, washing her, washing things around the house, trying to get the point across to her to keep her pants on, etc. This last round I put on a pullup, just thinking maybe she wanted one and that would help her keep it on. She came to me a few minutes ago, filthy again and without a pullup, and I couldn't find where she put it. At times like that it takes all my patience not to yell at her. It's just not how I want to spend my days with her. I tried to have a lot of time with her---reading, playing with pegs, looking at a big pile of sample greeting cards she usually likes to fold and look at, but nothing really made her happy. She constantly asked for chicken, which we will have for supper, and for "straw boxes", juice boxes and for videos. It's like I had one image of the day, as a homeschooling, cozy, time together type day, and she had another, as a let it all hang out, eat and watch TV day. Which I guess isn't that different than many typical kids, but the difference with her is that there's no reasoning. She doesn't understand that. Lately I've been coming to the conclusion she understands less of what I say than I even thought. When she asks for something and I say we don't have it, I don't think she has a clue what that means. She will just keep asking, and then say loudly and pointedly "SAY PLEASE!", thinking that's what I holding out for. The other day she really wanted chips, and her brother William had some in his room. I told her "go get some from William" and I realized, since she was motivated and completely eager for chips but still didn't go, that I don't think she even understood that. I am never sure if she knows William and Freddy apart, or what "room" means, or even "go get". She can SAY all those things, as part of set phrases, but I don't think she understands them. Her talking can delude even me, who should know better. All in all, a very long day. And a hugely long winter.