We Ski

Skiing is one of my great loves. My dad taught me on the small slopes of Michigan when I was about 12. There was a ski hill 15 minute from our house. I’d go after school with friends. On weekends and holidays we’d drive the 4 hours north to the bigger places. When I was a junior in college I opted out of the boozy spring break many of my friends were planning and flew out west with my dad to Lake Tahoe. I loved everything about it. Massive snow capped mountains. Cold, crisp air. The look and charm of the town. The high speed lifts. Runs so long we had to stop and rest on the way down.

About a year after I graduated from college I moved out west to San Francisco. A mere 180 miles to Lake Tahoe. Most winters I got a season pass and did a winter-long lease on a cabin with a group of friends. We were weekend warriors. When my husband B and I were first dating, I let him know where I’d be for the winter. He took up snowboarding.

We taught our son F when he turned 3. We would take turns skiing with F while the other stayed back with Jojo. When Jojo was 3, she was not yet walking, not even crawling. She was scooting on her bottom to get around. Skiing was not even on our radar for her.

In the winter after Covid hit, I signed F up for the ski team at Kirkwood, my favorite mountain south of Lake Tahoe. We were 10 months into isolating and I was climbing the walls. We all were. F and I made that drive every weekend from the last week of December until the middle of March. Just the two of us. B stayed back with Jojo. I didn’t like spending our weekends apart. Jojo didn’t like getting left behind. Getting away though, outside, to the mountains, riding up and flying down over and over. I never knew what skiing meant to me until that winter. Freedom.

Jojo has two years under her belt now as an independent walker. I heard about an organization called Achieve Tahoe. They have all manner of adaptive ski equipment and offer lessons to kids and adults with disabilities. They offer lessons at a couple of the mountains around the North Shore of Lake Tahoe.

We signed Jojo up for a half day lesson, and all four of us made the drive together. Our first family trip to Lake Tahoe in years. Our first family ski trip for all 4 of us ever. Jojo had an afternoon lesson. It was a bluebird day. So warm in fact that Jojo didn’t need her gloves, which was good because she refused to put them on. Goggles were a hard no as well. Getting the ski boots on was a hurdle, which B handled I assume with grace. I wandered off to buy myself a lift ticket to avoid the tantrum.

Jojo had two options for equipment. The first is called a slider. Its a walker on skis. They wanted to start her with this, which meant she was wearing regular skis. The slider would give her support and she’d have a coach on either side of her. If that didn’t work, the plan was to move her to a bi-ski, which is a supportive seat on skis.

Jojo didn’t like the looks of slider. Or the bi-ski. There were tears, repeated “no”s, crossing of arms. The staff of Achieve Tahoe didn’t flinch. In fact, instead of two coaches, she had four, including the head boss. She had an entourage. They worked with her until she was comfortable and calm. Wearing skis, they pulled her up the hill a ways and she skied down. They strategically and periodically nudged her toward the slider, as that was a requirement to get on the chair lift. And she really wanted to get on that chair lift. But no amount of encouragement, drive bys from me, or waving as I rode the chair and called to her, would change her mind.

The smiles and giggles as she skied down though. Off my mind went. Jojo can ski. Jojo IS skiing! We can ski together as a family. This is the beginning. It will take time and repetition and a higher degree of comfort with all of it. She can do it. I have watched her to do this many times – with horseback riding, with swimming, with brushing her teeth. Riding the bus to school.

For the rest of the day, and following days, Jojo proudly said “I skied” on repeat. Her way of asking something is with a “we”. If she’s hungry she says “we eat?” Since our trip she has been asking: “We ski?”. Yes, sweetie, we have lots of skiing in our future.

#au-kline syndrome, #aks, #achieve tahoe, #adaptive skiing

6 thoughts on “We Ski

  1. Thank you for this beautiful message of hope! Our little girl Candice, aged 7, also has Au Kline syndrome and she also loves the snow very much. I hope that one day her parents will be able to put her on skis like your Jojo. Best regards.

    Philippe Aix les bains France

    https://www.avast.com/sig-email?utm_medium=email&utm_source=link&utm_campaign=sig-email&utm_content=webmail Sans virus.www.avast.com https://www.avast.com/sig-email?utm_medium=email&utm_source=link&utm_campaign=sig-email&utm_content=webmail <#DAB4FAD8-2DD7-40BB-A1B8-4E2AA1F9FDF2>

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    1. My Grandson was just diagnosed with Au Kline this week. We have no idea what support systems or information there is. My daughter is located in SC. Our grandson is 3.5 If you could share any information, that would be great.

      Lisa Barfield Schaffer

      Are you on facebook or tik tok?

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  2. Can’t tell you how much I love this post! You are such a rock star mama!!!

    My sis and I were recently talking about how she will never ski again and your post just left me with more hope!

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    1. Andrea, I love your posts too. I followed your trip in Italy. I think of you often. We are living similar lives. She can definitely ski with Achieve Tahoe, perhaps we can meet up in Tahoe sometime! xo

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