Saturday, March 10, 2012

Doing the hard yards

Hubby and I have been talking about G today. We don't often get a lot of time to really talk things through, so when we do we tend to go to the important stuff first.
Today it was that we have both noticed separately that G seems to be showing more and more "tricky"behaviours, and struggling to cope with things that she had started to do well with. The staff at her preschool have noticed it. Even friends have noticed it. 

A few days ago I needed to leave G with someone while I went to an appointment. I did all the right preparation. I did all the things that usually work to get her ready for a deviation in her routine. Then she had a massive meltdown about me going, and I had to walk away and let my friend restrain her and deal with the fall out. 

Yesterday in the shops Hubby & I were choosing socks. G was with us, and she was right there next to me, then she vanished. Usually she runs off and I see her go, then it's just a matter of catching up. This time she had just slipped back into a rack of clothes, right where we were standing, and I didn't even notice any movement. We looked for her and called out to her for 15 mins. I had a hunch she was hiding, but she wouldn't come out, even though she could hear us. She said later she was scared by some people and she couldn't come out even when she heard us. She can't understand why it is dangerous for me not to know where she is. It is so frustrating that she is scared enough of something that isn't a real danger, but she has no fear of things that are actually dangerous. No amount of talking to her about not running away and not hiding is making any difference. 

Today when we went out I bore the stares and put her back pack/lead on her. She is tall, so she looks like a 6 year old. I'm so tired of knowing people assume things about me as a parent when we are out with her. I need to know she is safe, so I put her in the main part of the trolley (the seat is uncomfortable and too awkward to get her in to now) while we shopped, and I could tell people were looking at her sitting in there with her hands over her ears making funny noises to herself. As much as I try to tell myself I don't care, I do.

She is doing things more often lately. Almost every time I take her to the shops she disappears briefly. She is changing clothes more often (sometimes 5 times a day) because she is uncomfortable for one reason or another, and there are now many fewer clothes she will actually wear. She is developing this tendency to clap which I think is a stim. She is so fussy about how her food is presented. She is fussy about how I put her to bed. She is fussy about where she sits. The is so little flexibility in her. Every little unexpected change or situation throws her out of equilibrium. 

I've read and heard about regressions in Autistic kids, and I knew it was likely, but now that I'm looking at it- well- it just sucks. 

So, we had a talk about it all, and what we think we need to do to keep her safe and to help her cope better.
We have made sure the house is like a fortress so she can't get out. We have bought a little tent for her to have a place to hide at home. We have given her a sleeping bag she can crawl deep into to get some sensory deprivation. We have decided to see if we can get her back into weekly Occupational Therapy. We have decided to try to book some psychology appointments for her and I to go and get some input and support. 

Usually making a plan helps me feel better. This time it's not helping much. What it is doing is adding to the list of things I already need to do and making me feel overwhelmed. I tell myself one day at a time. Just breathe. I just have to hope that doing the hard yards now is going to pay off later.

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