14 January, 2010

Hand, Hand, Frozen Fingers, Frozen Thumb

Squid interviewed me for this article about how children like ours handle truly cold weather.

1) How do your child's sensory needs color their response to cold weather?

Jake does not seem to notice hot or cold, generally speaking. If the covers fall off he curls into a ball. If he's hot in the summer he falls asleep next to his window on the floor. He loves the outdoors more than he dislikes the elements, and would happily play in our backyard well past the time a "typical" child would seek warmth. (This is a picture of Jake in our backyard in a little fish pond we no longer have because he would get into it whenever he had the chance no matter how cold it was outside.)

Because we have to be aware for him we try our best to clothe him in the most appropriate outfit for the cold. I try to wear a similar number of layers and fleece/wool combination so I can help gauge when he might be too hot or too cold. We spend hundreds of dollars each year to get him the new size of snow overalls (bibs), snow boots and gloves. Of all the children in the (extended) family, it is most important to get Jake's outfit right, since it seems to make or break any snow event for the rest of us.

If Jake is not comfortable he will whine or drop to the ground repeatedly until we remove him from the situation or correctly diagnosis his need. Once we figure out the problem, he will generally have a little more patience for us to fix the problem, but if we don't he lets us know he's done.

2) Can you relate a particularly memorable, related incident?'
My family loves to ice fish, and even hosts an ice fishing even each year (you should come... it's great fun!). To get to our favorite lake there is a very short hike, perhaps 30 yards up a berm and over the edge, then there is just a large bowl of flat easy walking. It seemed simple enough, and we really try to do things as a family so we all ventured out. We had a complete outfit for Jake top to bottom, he was even amenable to hats then, and really the only thing that wasn't quite working were his boots. They were just a little bit too big. This would be manageable for most kids, but Jake also has low tone so every step he took his little foot popped out of a boot. Then Descartes tried to carry him, and every other step, a hat, or a glove or a boot would come off. It was mostly funny, but so exhausting. Luckily my husband is strong enough to carry Jake, and we are smart enough to carry extra socks. Jake recovered eventually, but he was so frustrated the day was cut short. (I am pretty certain this is a photo from that day.)

3) Have you had to modify your family's routine or lifestyle (or location) because of your child's response to cold weather?

We have realized over the years that Jake is happiest with 20 acres at his disposal, his parents watching from a distant perch on the porch of a log cabin. Since we no longer go to Montana every summer (why can't everyone else just stay married dammit? We did!) it is a bit harder to find a free range outdoor spot where we can see him and keep him away from traffic. Luckily my sister lives in South Lake Tahoe, with a large back yard and acres of woods behind her house.

Descartes and I made a plan several years ago to move to Tahoe. We love it there: supportive family, beautiful scenery, reasonable cost of living (compared to the Bay Area). We researched available businesses for sale, did due diligence on a sporting/outfitters store and began looking into financing. We started talking about selling the house.. the whole deal. We went to Tahoe on a Friday night, giddy with our plans, sipping wine and laughing with my sister and brother in law about the great life we would have. In the morning, after a fresh snowfall we went to play in the backyard. We bundled our tiny new baby in a bunting and set her on the snow. All wrapped up she giggled and watched as her brother ran around the yard. Watched as he flailed and tore off his hat, and his gloves and hopped out of his boots. We got his boots back on, eventually. We ended up duct taping his gloves onto his jacket with his hands sort of stuck in them. I'm not sure he has ever worn a hat since that day 3 years ago.

When the gloves came off again we were done with the whole thing. Exhausted, we stripped Jake down inside the house and realized that we could never live in a climate any less temperate than the Bay Area. Overnight lows in the 30's perhaps, but winter days in the teens? Though the benefits of family support were so tempting, the idea of epic struggles every single day just to stay safe was just too daunting. If not winter and gloves there would be summer and sunglasses. Tahoe kids wear gloves half the year, and things like hats and sunglasses year round.

We were very sad. It is hard for us to admit defeat; we make plans and we execute them. We don't know what our family would be like without autism so we just keep plowing on making choices and dancing through this life, and most of the time we are happy and strong, but sometimes we are stopped. Of course we could make it work, living in a place with "real" seasons, but would that be fair to Jake, being tortured daily for months on end? Would it be fair to his younger sister to have to wait 20 more minutes each day while we get her brother dressed, the little girl who already has to "wait", "hold on!" and "be patient" constantly?

We still play in the snow, but this New Year's day we played in the front yard, as close to home as we could be, and instead of wearing gloves Jake just went inside every 15 minutes or so and got warmed up. Sure we missed the big sledding hill, but we made a cool snowman and an ice fort, and all of the kids were happy, which of course, kept all of the parents happy too.
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