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Here’s What Autumn and Cooler Weather Mean for My Disabled Son

Jamie Sumner
Special needs mom, author and blogger
10/04/18  1:41 PM PST
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I feel it this morning when I step out to run before the children begin to shift and snuffle and make all the other noises foreshadowing alertness. The air is cooler and lighter now that the cloud of humidity has lifted. I can breathe and move easier. It’s excellent jogging weather. But when I think of autumn and what the cooler weather means for my disabled son, Charlie, in his wheelchair, my mind travels a different path.

Our heating unit gave out last year right as the seasons changed. It was old and tired and the spring and summer had not given it enough respite. Because of Charlie’s cerebral palsy, his joints get stiff, like rusted hinges, when he gets cold. A working heater is essential. Luckily, this was the early turnings of fall when the sun was still kind and the evenings mellow. We threw extra blankets on the beds and replaced the unit as quickly as we could. I cringed at the bill and asked my husband, “Is this what heat’s going for nowadays?” A month later, it happened to our van. All the manmade safety nets we had assumed were in place had unraveled in the off-season.

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I look down at my legs as I run. I’m still in shorts, but the time for leggings approaches. I make a mental note to check all of Charlie’s pants to see which ones still pull up over his leg braces. This is a very particular hunt I do each year: pants that are warm and yielding and also a step above sweats. Coats are harder. He has to be able to move with freedom and who can wheel well with arms like the Michelin Man?

I think of him on the soon-to-be wet and icy and snowy roads, roads covered in dirt and salt and grit. This is our cold-weather obstacle course. He likes the slip and slide of it all. I’m the one inching behind him and gripping the handles of his wheelchair for balance. At six years old, he makes me nervous, the way he swerves down the driveway and onto sidewalks. It’s like sitting passenger to a son just learning to drive. Everything is a potential accident. Everything is untested.

I recently received a reminder and coupon from our local grocery store for flu shots. We will go one day soon after school. I try not to remember the minimal percentage that it was effective last year. I will do whatever I can to protect him from the coming sicknesses. He clocked too many years immunocompromised as an infant and toddler for us to simply waltz into this season unprepared.

As I jog, I catch the whiff of chimney smoke. It makes me crave that first batch of chili as football season kicks into gear. I think of the stews I will make in my slow cooker that is currently sitting under a layer of dust after a summer of fish and fruit and pasta salads. That’s one advantage of fall—the magic of the slow cooker that can turn meat and beans and vegetables into a soft, earthy meal my disabled son can eat despite his feeding difficulties. It makes everything more palatable.

Someone has already stuck a jack o’ lantern decal on the mailbox a few houses down from ours. I flash back to trick-or-treating last year, with Charlie in the wagon and his twin siblings at his side—a fox, a unicorn, and a dragon making their way through the neighborhood, buckets in hand. He was the king of the cul-de-sac, the neighbors descending from their porches to carry their candy to him where he waited patiently on the sidewalk. I look forward to this and to the afternoon walks we will take in the park now that it is bearable again. Rolling through those piles of leaves is one of his favorite activities. He is wooed by the sound and the power of his own destruction. This season is more forgiving than I give it credit for in these small ways.

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By the time I finish my run, I have made peace with fall, as I do every year. There are so many things that I worry over for my disabled son—potential pitfalls and tiny hurts and boundaries he might not be able to cross. But more often than not, Charlie surprises me with his adaptability. It’s so much stronger than my own. He does not fight the tide like I do and because of that, it leads him more gently into whatever change comes next, including a new season.

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Jamie Sumner is a special needs mom, author and blogger.

Discover her new book, Unbound: Finding Freedom from Unrealistic Expectations of Motherhood.

Read her blog, The Mom Gene.

Follow her on Facebook.

 

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