Monday, August 8, 2011

Something's wrong

Something's wrong. My girl is dysregulated. She can't tell me why. I haven't figured out why, yet.

We've experienced months of progress and good days and now this.

She can't sleep. She was almost terrified last night. Upset. She cut her own hair in the middle of it. (ugh) Susan helped her. (see previous post)

Did she get into the cheese again? (That happened before we moved.) Has she had a dietary infraction? Gluten and dairy contribute to her dysregulation and we try to be very strict with her diet because certain foods dysregulate her so. Still, occasionally, she sneaks something and I find a wrapper or other evidence after the fact. I'm looking for evidence now in my quest to help her.

Is this the red-throat-thing-that-tests-negative-for-strep again? We battled that thing for several years. It sent her sensory seeking in bizarre ways (she wasted a lot of toothpaste and shampoo, for one thing) and kept her in a state of dysregulation.

Maybe it's strep.

Or an ear ache. Or tooth ache. Or head ache. Problems sleeping for her are sometimes pain in her face or head.

Maybe it's reflux.

Or hormones.

I don't know. She knows she's upset and dysregulated and knows it's bigger than usual. She is not able to give me the insight I need so that I can help her, to address the pain or a dietary infraction.

I hate autism. Hate it. I hate the part of autism that keeps her from being able to identify and tell me what's going on, the part that separates her from herself - I hate the part of the autism that holds her and the whole family prisoner to the dysregulation, that mocks me as I scramble to find clues and put them together to help her.

2 comments:

mysteryhistorymom said...

I feel your pain as we are going through the same thing. The only good thing I can tell you is that it has brought us all closer to God. He is all I have left, but is truly where I should have started to begin with! I want to do it all myself as I am the MOM. I should be able to do it all, right? sigh... We know the answer to that question.:) I will keep you in my prayers and would be so thankful if you would do the same. Feel free to email anytime... Lori toosillysisters@cox.net

Di said...

I am sorry to hear this! :(

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