By Peter Doehring
When my daughter Margot was born with very significant developmental disabilities, a seizure disorder, and enough cerebral palsy to require that she be fed through a tube, we had to completely rethink our life as a family together.
A big turning point came about 10 years ago, when Margot was eight, and we took her on her first bike ride towed behind us in a specially adapted trailer. That day, we discovered her sense of adventure. But if someone suggested back then that one day she would be on skis, I would say they must be crazy.
Well, I guess I am crazy, because two years ago, we got Margot on skis! How did we do it, and what did we learn on the way?
Begin by building a routine of outdoor adventures
Just to be clear, skiing IS NOT the first adventure you should try! Even the short walks we began with Margot when she was six were really challenging for her, but they were so important. They helped us learn what was difficult for her and how she might communicate that through her behavior and mood. They helped us to build her strength and endurance and appreciate how much she liked to be outdoors. And when we experimented with kayaking and visits to the waterpark, we learned just how excited she was to try something new, even if it meant sometimes getting a lot more wet, cold, and tired than she was used to.
Add adventures on the snow
Tubing was our gateway into skiing. Margot got used to being bundled up by us, and we honed our dressing skills until we were faster than a NASCAR pit crew. Through trial and error (i.e., un-bundling Margot to discover her drenched in sweat or cold as ice), we figured out just what layers she needed depending on the temperature. Margot also learned that sometimes a long, cold wait was needed for a short thrill. Gloves are still a battle to keep on, but at least she now tolerates goggles.
Consider your child’s overall level of skill, strength, coordination, and balance
Children like Margot face extra challenges with regards to their strength, balance, coordination, and endurance, and these vary greatly from one child to another. Margot’s specialists (like the Occupational Therapist at her school) can provide insight about these differences, and so we knew from the outset that she was going to need lot of extra support. Skiing also draws on a whole set of skills and muscles. Many children like Margot also lack the experience of running full-speed or scampering on playground equipment, experiences that build confidence in one’s balance and skills. So we gave Margot extra room to discover what she could do.
Find a good adaptive ski program
My first stop at the National Sports Center for the Disabled at Winter Park was the turning point. NSCD is truly a gem! The expertise of their instructors and enthusiasm of their volunteers helped me begin to believe that this might actually work. I spent a morning “being Margot”, trying different equipment on the slopes, tethered to the instructor. I continued with two other adaptive ski programs near me, where I saw the expertise of the instructors in action with Margot. The instructors helped me to realize that the slopes make it possible for Margot to experience speed with relatively little effort, effectively erasing part of her disability.
Lean on your instructors for specialized instruction
Each of Margot’s instructors draw on different experiences—as skiers, as school teachers, as siblings of someone with a disability, and so on—to break down the necessary skills and teach them one step at a time. While some of these steps draw directly on the lessons taught to every typical skier; others draw from specific experiences these instructors had accumulated working with different skiers with different disabilities. While all of the instructors we have worked with have been comfortable identifying and addressing the physical disabilities, some have been less familiar with developmental disabilities. But all have been eager to integrate our feedback about how to work with Margot.
Work as a team to monitor and set goals
It really is a team effort! While the instructors draw on their experience with a wide range of skiers, I clarify what Margot could understand and monitor when she is approaching the limits of her skill or endurance. At the end of each lesson, we review progress and set goals for the next lesson.
The key is knowing just how far to push Margot and when she has had enough. At first, we could complete two 45-60 minute “lessons” each day.—an unfamiliar routine and surroundings, going from stuffy fitting rooms to bracing cold, plus the sheer exertion of walking with skis pushed Margot to her limit pretty quickly. Now, when the conditions are good, we go for 75- or even 90-minute lessons twice a day, from the time Margot leaves the condo to when she returns.
Consider specialized equipment
An important, early decision is whether to utilize specialized adaptive equipment and, if so, what kind. Each type of equipment draws on different kinds of skills and so requires different kinds of training. Shifting to a different kind of equipment might require that Margot unlearn some of these skills. After 4-6 lessons watching her walk and then start to slide on her skis, I knew that Margot could probably learn to stand upright and keep her skis straight. But she could not do both at the same time while maintaining her balance. When this became clear, we tried a snow slider, and it was an immediate hit. By the end of her second lesson, Margot was going up the lifts and down the bunny hill with an instructor.
Master the lifts
Next to skiing itself, the biggest challenge can be getting on and off the chairlift. One instructor helps Margot on and off the lift, and a second carries the equipment and then skis uphill to control traffic. We have the lift come to a complete stop at the bottom, start slowly so we can get restraint bar in place, and then slow down or stop for the dismount. Margot was not at all scared on the lifts and learned to enjoy the thrill.
Develop a ski routine
Getting Margot ready for skiing and on the slopes can sap her interest and strength if it drags on. Waiting in a hot, crowded room to get equipment adjusted and develop a plan for the lesson quickly wears her out. So I bought Margot her own skis (from Powder7, of course!) and snow slider (from Enabling Technologies in Denver). If I need to talk to the instructors, I do this without Margot. We bring Margot in her special stroller right to the lift, meet up with the instructors who have already brought her snow slider, and are ready to go within minutes. We stay slope-side to get the lifts more quickly
Learn to let go while holding on
Throughout this process—indeed, throughout our life with Margot—we have had to learn to let go while holding on. What does that mean? With someone like Margot, it is easy to become pessimistic and hard to trust someone new with her well-being. It was not easy to let Margot go with the instructor onto the lift for the first time. Would she be scared? Would she panic? And then once on the snow slider, would she fall? But watching her slide downhill for the first time, under the careful control of the instructor, we began to let go of these fears for her safety. And as we saw Margot’s delight, we let go of our fears of being disappointed. We reveled in her delight and began immediately to plan our next ski trip together!
And now that I am learning to be an instructor, I literally have to let go while holding on! Whether I am tethering Margot on the snow slider, getting her onto the lift, or holding her close to my side as we ski off the lift together, I have to trust gravity to work its magic. If I hold on too much, we slow down and she is a lot harder to turn in the snow slider. We come to an embarrassing stop on the bunny hill until the other instructor gives her a push. If I let go too much, she goes too fast and is harder to control. Even more embarrassing was the one time this caused me to tip over (helpful tip—only use your face as a brake as a last resort). And so we continue to learn and to have lots of fun together, as I continue to work on letting go while holding on.
Read more about Margot’s journey here.
