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Saturday, January 26, 2013

Tired of tired, impatient with patience

Janey is asleep now.  She fell asleep, today as yesterday, at 5:30pm.  Far too early, as that means she wakes around midnight with lots of middle of the night energy.  And although Tony trades off with me, and we get her back to sleep after a few hours, the night is not restful.  The nights are often not restful.  Janey almost always ends up in bed with me,  She is a bed hog, and she kicks.  She has no notion of personal space, and she thinks nothing of elbowing me hard to get where she wants to be.  I don't think I ever sleep solidly at nighttime, not for years now.  And I'm tired.  The tiredness is awful now.  I have a doctor's appointment in a few weeks, and I have some big questions for the doctor.  The last round of thyroid testing I had showed my thyroid was not working well again, but she chose to not raise my dose of replacement. I take a pretty high dose, and I guess there is a max to it, although I'm not at that yet.  But I'm noticably more tired than usual.  I am feeling at the point where almost everything feels like an effort to do.  And when you have an 8 year old who is dependent on you as much as a toddler would be, as well as two teenage boys, that is not a good way to feel.

With the tiredness comes a lack of patience.  I am usually a patient person, with a very, very long fuse.  I am skimpy with praise for myself, but I feel I can say I'm more patient and less likely to lose my temper than most people.  But that is being tested.  Today, several times, I snapped at Janey.  I rarely do that.  I know she is generally doing the best she can, and the things that she does that make me annoyed are not her fault.  But today, I wasn't able to not snap at her.  It was mainly over her just not responding to what I said.  I asked her to come over to get her pullup changed and her clothes on.  I asked again, and again, and again.  The fifth time, I yelled.  She looked startled, and did come over.  Later, when it was time to get her coat on, same story, and again, after a bit, I yelled.  Freddy said "You are getting upset with Janey today a lot"  It was noticably not like me.  It's not how I want to be.  But on days like today, I just see no end, no rest in sight, never.  I still need to do so much for her that most 8 year olds would do with ease.  I can't tell her in the night if she wants to be awake, she has to take care of herself.  I can't do anything but watch her when she is awake, in the daytime or nighttime.  I got distracted today with the exciting joy of putting up some charity calendars I bought at a thrift store.  It probably took 2 minutes, but that was long enough for Janey to find a huge glass and pour a whole 2 liter soda in it.  Of course it overflowed, especially when she stuck her hand deep in the class for some reason.  She was soaked, the soda was wasted and I just felt like giving up.  The whole time, I was in audio range of her, as she talked to herself.  It's not like I'm running down to the neighbor store to buy things.  This is when she is right there in the next room, but I guess next room privileges are more than I can have right now.

So, we go on.  We dread the phrase "I don't know how you do it", because I don't know how I do it, either.  I do it because, really, what else can you do?  We all do it, the tribe of autism mothers.  No matter what ways our views might differ, we all are together in doing what appears to the outsiders to be not doable.  It's reminding me of cartoons, where when a cartoon guy runs off a cliff, he's fine until he sees what he's done and looks down, and then he falls.  I guess we shouldn't look down.  We should just keep running, and not realize there is no surface below us, a lot of the time.


mknecht24 said...

This is one of the many, many days I wish we were neighbors.

Sophie's Trains said...

Sophie is only 2.5 and I already feel like this sometimes. I am also very patient with a long fuse. But, not responding to me when I KNOW she understands. Flopping and kicking when I'm trying to get her jacket on, even though she wants to go out. On days I didn't get a lot of sleep... I work really hard not to snap sometimes. I think there is that underlying anxiety, "will she ever listen.", "will it ever get better?" The light at the end of the tunnel as you said. The "just a phase" we were going through with our older kids might not be a phase at all with our girls. So yea, I understand.

Roxy Simmons said...
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Sakurafleur said...

I really sympathize. I have a bad leg injury (caused by two falls in the last 4 months) that keeps getting re-injured by me picking up Olivia or just walking along and she pulls me at an odd angle and my knee will pop again. It makes it harder to cope when you have something else going on - it doesn't take much to throw your daily life off and illness or injury can do that. I remember reading that you have to be fighting fit to deal with Autism.

I keep telling myself that spring is coming - things will seem brighter soon. I think these two months are the hardest.

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