By Rachel Gray:
Jonah is my youngest child and my only boy. He has the energy of a nuclear power plant and I only wish that I could harness a small portion of it for myself on days when his energy wears me out. He has a smile that lights up a room and a hug to go with it. For the outside world, he appears to be an average six your old boy. But Jonah has struggled with a force bigger than my love for him could fix. My son is autistic.
Jonah is six years old and despite all the obstacles he faces on a daily basis, he amazes me with his ability to do things I would have otherwise not believed he could do. We are fortunate that we started getting Jonah intervention services at the age of three and we’ve seen him make amazing progress; however, often progress leads into new challenges and new frustrations for him. Despite the frustrations, we don’t give up and we continue to allow him the same opportunities our two girls enjoy.
Skiing has always been a big part of my husband’s childhood and the stories he would tell about his trips with the family up to the local ski resort always made me tinge with a bit of jealousy that I had not been raised on skies as well. I knew that we would have to get our kids up to the mountains soon so they could begin the journey in this lifelong sport that we could participate in as a family. There was just one glitch: how was Jonah going to do? His attention span was like the movements of a hummingbird, thoughts buzzed about in his head zipping from one to another. It took very little to send him into a fit of frustration and rage. How would we do this? Fortunately, he had qualified for services for behavior therapy, specifically in ABA (adaptive behavior analysis) and we learned how to redirect Jonah and how to establish reward systems for desirable behavior. It all started to fall into place, albeit, rather slowly. The biggest lesson we learned from this therapy is that with the proper motivation, Jonah could do anything any other kid could do.
So, at the age of 4 ½ we took Jonah to his first ski
lesson. It was a complete disaster. We signed him up for the kid’s ski school as we had done with our daughters, but Jonah just couldn’t get it the way the rest of the kids did and he soon grew increasingly frustrated (as did his instructor who was trying to deal with a group of four and five year olds). All signs seemed to point to defeat for Jonah. My husband and I tried to work with him by ourselves, but it became clear that he was having issues coordinating the movement with these “sticks” that were stuck to his feet. I remember him looking up at me with those big brown eyes filled heavy with desperation as he said, “Mom, the sticks aren’t working.” I felt his frustration, but I had seen all of the obstacles he had overcome in the past and I just knew if we could find a way to make this make sense to him, he would get it. I wondered if maybe snowboarding would be easier for him; after all, if both his feet were on just one unified surface he could focus more easily on the movement of the board and controlling that movement. It was then that I decided that he and I would both learn to snowboard. Enter, Seth Johns. . . .
It was at the Heavenly Ski School in South Lake Tahoe on a bluebird December day that our quest began. I signed up for an adult class and although we tried to sign up Jonah for the regular group lessons, once I mentioned the “A” word we were told that they offered adaptive lessons. This was the first resort we had been to that actually had instructors who were trained in working with autistic children. Seth Johns was the instructor assigned to work with Jonah that day, and I won’t lie, I was so worried that Jonah would test every one of Seth’s nerves. So as we filled out paperwork and got his boot and board sized and ready, I went through the usual litany of all of Jonah’s idiosyncrasies with Seth. I really had nothing to worry about because once I saw Seth stoop down to Jonah’s level and talk to him like they were old pals, I suddenly knew it would be okay. Seth showed us that Jonah could learn to ride by using the same tools we had been taught in behavior therapy – - redirection and reward. He knew to set up motivators for Jonah, lots of encouragement and lots of breaks to build snowmen or grab a hot chocolate. By the second day they were on the chairlift and Seth distracted Jonah from the fear of riding on the lift by having him focus on the numbers on the chairs that passed them going downhill. We discovered Jonah likes the number 11. I saw Jonah sit next to Seth on the shuttle to the resort with a huge beaming smile on that last day of lessons because “his Seth” had shown him how to be a snowboarder. Suddenly, he wasn’t just the autistic kid with limits and labels; he had gained confidence in himself.
I would love to say that after that adventure in Heavenly, everything just fell into place, but it hasn’t quite been that easy. It is a challenge to find resorts that can work with autistic kids. He loves to be with other kids and learn alongside them; that has been a challenge because he requires an instructor who understands that just a few simple motivators will get him going right along with his peers. However, we remain vigilant and if I have to sit at the foot of the bunny hill while he takes a group lesson to help him get through the rough patches, then I do.
For those of you who are reading this and have a child with autism, or know someone with a child who is autistic, may I make a tiny suggestion? Don’t let the diagnosis or even the fear of this disorder keep you from introducing your child to the wonderful world of snow sports. Jonah’s progress is much slower than the other kids his age, but with patience and persistence (yes, there are days when he tells us he doesn’t want to do snowboarding and within a few minutes he will be right up there laughing and yelling, “I’m going to race you down the hill!!”). Stay persistent. It will, as the adage goes, pay off.
Today our family enjoys the fun of packing up the van the night before and venturing out before the sun rises to our local resort to play in the snow. My oldest daughter has stayed true to her skiing roots, whereas, her younger sister has decided to join Jonah and me in the deliciously exciting world of snowboarding. Each time we go up to the mountain I am blown away by the benefits this experience has been on not only Jonah, but on us as well. Jonah continues to defy the odds with his newfound skill of snowboarding and as he progresses in this sport he will continue to gain the confidence he will need to be successful in life.