These two disorders together look like a girl wearing pants, a long-sleeved shirt, and a winter coat with the hood up, standing outside in the sun in 80 degree heat.
This is what I saw yesterday while outside watering my garden. It's about 11am and I'm in shorts and a tank top and a huge sun hat, sweating away under the hot sun, wishing I could be in the shade. I look up and here comes Jane dressed for winter.
This is at least the fifth time this summer she's come outside dressed like this. Why? Because she can't find her sun hat. I have an inviolate rule that the children must wear sandals and a sun hat when playing outside. No more splinters and sun burns since the rule went into effect!! Once Kate, age 3, couldn't find her sun hat so she scrounged around among the winter things and found a knit cap and was running around in that. I explained the purpose of the sun hat and Kate now wears the right hat every time.
Jane is a year and a half older than Kate but she cannot grasp this concept. Since her winter coat has a hood it's a "hat" in her mind and so she will put on her winter coat and pull up the hood in order to meet the Hat Rule. (Don't ask me why it's still hanging on a hook in July and isn't packed
away yet. I have five kids. Plus, in our state winter sometimes randomly
comes back mid-summer just to tease us. The boots aren't put away
either. Oh well.)
Here's the thing. She didn't even look hot. She wasn't red-faced or sweating or bothered at all. Her sensory system does not work.
I call her over to me and begin trying to lead her through a basic logic exercise by asking her simple questions.
- Is that a winter coat?
- Is the sun hot?
- Does your hood keep the sun out of your eyes?
- How does your body feel right now?
She knows she's done something wrong but she absolutely cannot remember what it is. She knows she had to take off and put away her winter coat last time she did this (probably as recently as last week) but she truly does not understand why.
I take her inside and start with the basics of teaching her what the words "hot" and "cold" actually mean. I put her in front of the window AC unit. I use my hair dryer on her. I put her hand in cold water and then warm water. We talk about eating ice vs. eating hot pizza right from the oven. Eventually she can reliably identify the terms hot and cold.
(Note: she still gets tripped up when applying the terms though, for example: "if you felt cold you would put on a blanket to get warmed up, right?" Using both cold and hot in the same sentence to show an opposite but connected relationship is beyond her logic ability.)
After she finally demonstrated a knowledge of what the sensations of hot and cold felt like, I moved on to clothing. I took her into her room. Yes, in her drawer most of clothing is shorts and short-sleeved shirts but there are some long pants and long-sleeved shirts because, hello, our weather is cooky and I'm not unpacking tubs of winter clothes if we want to sit outside on a cool evening.
We talked about how each clothing item makes us feel. I finally phrased it in "rule" form since that's what she prefers when learning something new. The rule was: more clothing makes us more hot. We don't want hot clothing when outside in the hot sun.
At the very end I asked her why she'd even put on the long pants and shirt when getting dressed this morning. She pointed to the AC window unit and said it makes her cold.
Oh lord. Kate came in as we were talking and confirmed it. Once I opened the topic both girls complained bitterly that they were always much too cold at night. Why?? Why hadn't the told us??
It's the trifecta. Sensory issues plus FAS and, oh yeah, childhood trauma and foster care and the inability to advocate for oneself.
So what does this do to me? It makes me feel unbalanced. I never know what deep misunderstanding or inability will manifest itself next. I feel wary--what am I missing? What need do they have that I don't even know is there?
And of course I project into the future. What will these issues do to her when she's trying to navigate social relationships in middle school? When she's learning to drive? When she's taking hard classes? When we add hormones and girl body issues to the mix?
Right now it's just a clueless little girl in a bright pink winter coat standing in the sun. Nobody sees but me. But what about when she's out in the world and everyone else can see the clueless girl under the spotlight?
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