Sunday, February 21, 2016

Parenting & Autism Journal - 6/17/2015

I found this old Autism Journal entry
that I wrote on June 17, 2015.
Now is as good a time as any to share it.

Let me preface this by explaining that I am sick today. I am stay in bed, play Fallout all day, desperately try to stay hydrated sick. I know I look like hell. I got up to get another glass of water. 

My 14 year old daughter:

You look... eww. 
(Long pause) 
Are you okay? 

Other Mothers of Other 14 Year Olds would likely be upset by this. Not me. 


Yeah, I'm good. 

In my head: 

Be cool. Play it cool. Don't screw this up. Just stay calm and get back to bed. 

This is followed by the biggest smile I'm capable of and dancing a (sickly) near jig all the way back to bed while I try to contain my excitement. 

I don't know if her therapy is working or if she's just reacting positively to being home again, but this is huge. SHE NOTICED ME. She noticed I was in the room and she said actual words to me! She made eye contact! Zoey is on the Autism Spectrum. She's designated as "High/Low", which means that her level of functioning shifts between (you guessed it) high and low. When her routine is screwed up (say by traveling, as we did last week), she shifts to a lower level of functioning. This means we have to skip out on planned dinners, leave parties early, pull over to the side of the road for seemingly no reason for indeterminable lengths of time. It means we will do crazy things like hunting down a specific brand of toothpaste or Easy Mac or buying an entire bottle of laundry detergent and visiting a laundromat on vacation because we aren't willing to fight over how her (notably clean) socks smell to her. We pick our battles when things are low functioning. Safety is key. It's one of the first things to go. 

A new friend that I work with online met us in Anaheim on Friday. Or rather, she met me and my younger daughter and my husband. Zoe had just given herself second degree burns with hot cocoa and was recovering in the hotel room. Her reflexes go first. We can see it. She stops making eye contact and then... yeah. When it gets bad enough, it's impossible to hide it. We've had people think we hide it because we're ashamed. That's not true. We hide it because it can make her a target for people who would do unspeakable things to someone who could not and would not defend themselves in any way. 

Low functioning days are awful. They rob us of our Zoey. I don't hate my Autistic daughter. I hate Autism. 

Today she's coming back up and the Autism is quelling back down. She's making eye contact and saying rude things.

I couldn't be more delighted by anything in the world. 

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