The following post is another installment in our Dash of Dad special needs parenting series by Bob Williams, father of three children including Kyle, a special needs teenager. When he’s not parenting his three kids, you can find him creating sweet treats at the Dillsboro Chocolate Factory in North Carolina.
I grew up in Florida, and growing up in Florida means lots of sunshine and warm weather, even in the dead of winter. All my kids were born in Florida too, and when they were young, we started coming to the mountains of North Carolina for Thanksgiving or Christmas break.
Sounds like a blast for the kids, and it was. However, Kyle was not a cold weather kid. If the boy had it his way, he would be in sunshine, nearly naked, on a boat or in the pool 24/7/365 in 87 degree weather. Kyle loves the water, and he loves the boat; snow and cold weather, not so much.
So there we were on Christmas break when Kyle was 8 years old, and we were blessed with a snowfall between Christmas and New Years. We packed up the kids and headed to Soco Gap on US 19 and the Blue Ridge Parkway (BRP) where there is some good snow and sledding on the BRP clover leaf. We got the sleds out and the kids were zipping down the hill having a blast.
Kyle stayed in the warm SUV and we were coaxing him to get his shirt and winter coat on.
We got Kyle dressed and out in the winter air, and I took him down the hill on a long sled with me. He laughed and seemed to enjoy it a bit. So, I gave him a piggy back ride back to the top of the hill where the other kids were sledding. Kyle became determined to strip off his coat and shirt.
We got in an epic battle (you know, the kind where it’s your kid’s will versus your resolve as a parent) to keep his clothes on in the winter air. At some point, our resolve was not greater than Kyle’s, because unlike a normal kid, kids like Kyle have a steely eyed will that sometimes just can’t be broken.
Sometimes special needs kids just need to learn the hard way, and no amount of reasoning or subfreezing air will matter.
There we were in the cold air, and Kyle’s cousin Glenna was up next on the sled, so we asked her to take Kyle down the hill with her. Now Glenna is Kyle’s age, and in a way her sledding skills were not much better than his.
The set up went like this. Glenna was on the back of the long plastic sled toboggan thing. Kyle was shirtless as Putin on the front part of the sled. There was about a 200 foot run down the slope of snow and ice. It was maybe 30 degrees out with low humidity and not much wind. What possibly could go wrong with this?
We shoved the kids off and down the hill they went. Then Glenna and Kyle hit a small bump in the snow, with the sled speeding along at 13.5 miles per hour, where upon the sled rolled over, ejecting its two riders (one being topless). Kyle was now chest down and racing down the hill for about another 10 feet, more or less body sledding.
We raced down the hill, and he was repeating the words done, done, done, cold, cold, cold. He had a series of nonfocal seizures, and we got him warm in the SUV. He was a little scraped up by the ice but okay otherwise.
We sledded there for maybe two hours more, and during that time, I checked on Kyle and asked him if he wanted to sled. One time he started to have absent nonfocal seizures at the thought of it all. I am not making that up here.
Then right before we were about to leave, I asked again if we wanted to sled. He said, “Yes, yes, yes.” I then said to him, “Okay, if you want to sled, you need to put on a shirt and your warm coat.” He said , “Yes, yes, yes,” in excitement and a new word – warm coat.
There are several morals of this story.
Some special needs kids, unfortunately or fortunately, need to experience hot, cold, pleasure, and pain for them to learn.
There are hazards to this of course. Kyle often learns experientially or by doing, not by simply being told. Sometimes with your special needs kids, it is okay to take some risks, to push them and challenge them.
Shorty before the sledding accident, I was chastised for letting my kid be outside in the cold air without a jacket on. They had no clue as to why he was outside without a jacket, nor did they witness the epic father son battle of the wills which lead to it.
Sometimes we have to let our special needs kids be kids.
They are not as fragile as we think.
Don’t give up on your kids.
I could have just let Kyle sit in the SUV while the rest of the kids where sledding. I knew he had fun when he went down with me, and I knew all he needed was to keep his clothes on and he would enjoy the ride.
Blind kids like Kyle crave vestibular input (motion input), and Kyle is a speed junkie. I encouraged him to get back on that sled, and he did. By doing so, I think I kept that toughness in him going and his determined spirit alive.
Don’t be afraid of being judged.
I took some risks and did some things that others around me, who had no idea about our situation, would never do themselves. If you have a younger special needs child, you can’t be afraid of being judged, watched, or sneered at by others.
Raise your kids, push them to live and enjoy life, and if the risks won’t put your child in serious danger or possibly worse, then take those risks, because life is worth living even for our special needs kids.
We now live in western North Carolina and Kyle knows when the weather cools off that he needs to put on his shirt and warm coat.
He knows when the weather warms up in the spring that he gets to trade his warm coat in for his favorite coat, his boat coat (life jacket). He knows that soon he will get to enjoy high speed rides on the tube behind the boat or a lazy tube ride down a mountain creek.
He no longer fights us while getting dressed to go outside. It all started with a sledding accident eight years ago on Socco Gap where Kyle learned so much in those never ending seconds sliding bare chested down across the packed snow.