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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!


Garnetrose said...

this is one of my followers.. you may want to visit her blog as she has an 11 year old autistic child, a girl. My geat niece is autistic. You can contact her and she might be able to talk to you. She is a wonderful person.

I hope you soon find some relief and it would be nice if someone would offer to watch her for a time. My mom had friends who had five children who were learning disabled and I would watch them for nothing because the mom and dad did not have much and the mom was always to tired looking. I would just go over and watch them to give her a break on occasion.

I hope you soon find some relief.

tracey (aka rainbowmummy) said...

I wish you could email that post to all the people I'll ever meet in my life.

Take care, x