Tuesday, August 4, 2015


One day last week when it was about 30C here in Canada (That's 86F) and humid enough to make my hair look like I was  Chewbacca's cousin, my daughter came downstairs in a sweatshirt, a pair of jeans and socks. SOCKS. My kid HATES socks. Similarly, in winter, when it's -30C (or -22F) she was heading out to school in crop pants and a short sleeve t-shirt. Temperature regulation is wonky with her ARND.

The first time I met my daughter, she was about 15 hours old. She was in the neo-natal unit, and at 8lbs, 2 oz and 24 inches long, she towered over all the preemies in the unit. She was also having a significant hissy fit. She had a full head of hair, and was in a hoodie sleeper with the hood pulled up. I think it also might have been a bit short for her, but in any event, she was unimpressed with the hoodie. She was pitching her head back and forth and crying.  I looked at her for a minute, and she stared right back at me. I reached over and gently pulled the hood down. She settled immediately with a sigh and an impression that clearly communicated "Finally, someone gets it." She was too hot.

Keeping a hat on her as an infant was a challenge. I finally knit a hat that looked like a Dutch cap that fit into the bunting bag hood. It wasn't technically ON her head, so she tolerated it. As she's grown older, kitting her out for winter is a challenge. Many of the winter gloves and mitts bother her hands, or are too hot. She likes my handknit socks because they are knit from the toe up and have no seams. Many of the winter hats have seams that bother her. I've picked her up from school a few times in the middle of winter, and she has neither hat nor mitts on, and her hands and ears are red. Socks are the first thing to go when she gets home, and our house isn't that warm. And don't get me started on winter boots...

She can overheat quickly in the summer, and I have to watch her. Not a fan of water, she dehydrates and then she gets dizzy and flushed. She's also not a fan of sunscreen because of the feel on her skin. Since my mother died of inoperable skin cancer, sun protection is non-negotiable, so finding one she'll tolerate is a challenge.

Right now, we're in a flat-cap hat phase, so at least she's wearing a hat in the summer. Now, granted, she's wearing it sideways, but at least it's there!

Body temperature dis-regulation is just one of the daily challenges we face with ARND, and is easily misunderstood. The health teacher once sent me home a snippy note to remind me to provide adequate winter clothing for my daughter. I responded by telling her to check her backpack...Sure enough, hat, scarf and two different sets of mitts were sitting in the backpack. They were on her when she got to school but I can only do so much!

It was much easier when she was small and I could just put the clothes on her body. She's now a tween with very set ideas about fashion. I'm not looking forward to winter and trying to get her to dress for the weather, rather than what she thinks the temperature feels like. (and no, dear, shorts over leggings are not enough layers when it's -30C and you aren't also wearing snow pants)


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