Twin brothers Ethan and Alek started skiing with Achieve Tahoe when they were five years old, and they’ve been hooked ever since. Both brothers have autism spectrum disorder and developmental delay, while Ethan is also totally blind and has a seizure disorder, and Alek has very mild cerebral palsy. Now 23, the brothers look forward to skiing and coming to our Sierra Summer Sports day camp on Donner Lake every year. We recently had the opportunity to ask Deb, their mom, some questions about their experience with Achieve Tahoe, and how adaptive recreation has impacted their family.
Achieve Tahoe: How long have you been participating with Achieve Tahoe?
Deb: The boys started the ski program when they were five. Slowly. We had no expectations for the first lesson, we just wanted to give them the experience to see if they liked it… And boy did they! Every year, when the weather starts to cool, they are asking to go skiing.
We’ve learned a lot along the way, like how to make it easier to get up to the slopes (e.g., renting skis locally in San Jose, then when their growth plateaued, getting them their own equipment (actually that was Santa)). When they were younger, we only did 1/2 days, but as they aged and had more stamina, we started doing whole day lessons, which was great for them and us.
When they were about 15, we really began to see a change in their ability and confidence. There was one lesson with Alek where the instructors were at the top of a trail deciding which way to go, and Alek just started without them. LOL.
Achieve Tahoe: Can you describe Ethan and Alek’s disability, and how it affects their lives?
Deb: We don’t think that the question of “change” or “impact” applies to Ethan and Alek. They have had their disabilities since they were born, hence it is who they are. It has shaped every system with which we interact for 23 years. It hasn’t changed them because this is all they know. As far as a description of their disabilities, Ethan is totally blind, has ASD/DD, and has a seizure disorder. Alek has ASD/DD, and very mild CP.
Achieve Tahoe: How has Achieve Tahoe influenced Ethan and Alek? How has Achieve Tahoe influenced your family?
Deb: Achieve Tahoe has given them joy, a sense of accomplishment, confidence, balance, endurance, and a love of sports/physical activity. It has given us the ability as a family to have a winter pastime. Without Achieve Tahoe, finding a welcoming community for our population would likely have been impossible. You guys “get it” – we never feel uncomfortable for their disposition or behavior, we never have to over-explain anything, you don’t complain about more runs, the weather, the hardship, skiing backwards for three straight hours – you do what is needed with happy smiles and confidence (even singing Christmas music with Ethan after Easter).
Achieve Tahoe: What is your favorite part of participating with Achieve Tahoe?
Deb: Watching them skiing successfully and experiencing moments of independence; getting to meet other great families over the years; and interacting with great staff and instructors. Skiing is not a skill that can be learned overnight; it takes commitment and years of practice. The fact that they have learned a specialized skill — something that can’t be taken away from them, that they will always have — fills us with pride and satisfaction. Such opportunities for our population are few and far between.
Achieve Tahoe: What is the importance of accessible spaces/programs in your life?
Deb: It’s our entire life. Accessible programs are everything- they open up the world to our family.
Achieve Tahoe: How do Ethan and Alek feel about skiing and about Sierra Summer Sports?
Deb: It’s a place where they feel completely at ease with who they are – it’s “home.” As Alek likes to say, it’s part of his “ecosystem.”
Ethan & Alek: Happy.
Thank you to Ethan, Alek, and Deb for taking the time to talk with us, and we look forward to seeing you out on Donner Lake this summer.