Saturday was the annual Aspen Rotary Ducky Derby. Every year 30,000 duck are released in the Roaring Fork River with the proceeds of the duck sales benefiting hundreds of local nonprofits. The race is attended by thousands who follow the ducks progress from beginning to end. The “buyer” of the winning duck takes home $10,000, once again it was not me.
As part of the festivities a large party is held in the Rio Grande Park where the recipients of these funds have booths to sell kiddie games and make some extra money. Alex and I volunteered for a few hours with WindWalkers, the therapeutic riding program Alex participates in as a rider and a volunteer. She wandered the park selling otter pops, just like any 19 year old volunteer.
And this is the point of my post……when Alex feels valued, and part of the community she does not have down syndrome, she is just like all the other ducks in the river. She may swim at her own pace, but she is IN the flow, not stuck in the debris. She actively forges ahead, slowly down as needed to avoid derailers and speeding up when her opportunity to shine presents itself.
I was reminded of this Alex, the one who does not have down syndrome this past week. Alex volunteered for the last ranch camp at the WindWalkers Camp. She knew exactly what her week was going to look like, and she knew she would be valued for her contribution, not her disability. Her world was black and white for one week, and for her this works.
Every day Alex set her alarm, took a shower, got dressed, made her lunch and reported by 8:45 for her ride to the ranch. During the day Alex helped with arts and crafts and whatever chore she was assigned. She called either her father or me to make sure we remembered to pick her up at 4:00 (she knew this was necessary based on experience). On the day we could not figure out how to get Alex to camp, she called one of the other counselors and asked for a ride. Her conversation was appropriate and intelligible, I was not involved in ANY way.
Once home from the very hot ranch, Alex took a shower, or went on her Tuesday/ Thursday walk with our friend Mary. Alex did not complain about being bored, or anything for that matter. In every sense she was an independent 19 year old going to her job without ANY parental supervision or intervention. That extra chromosome got tied up in some weeds, and it was very good.
And just like the ducks that finally make it to their resting place for the year, Alex too takes respite. We have not yet found the magic answer, the life where Alex can always feel valued and part of her community. We are searching, exploring and experimenting and I know we will find the answer, like others before us and those after us. We have to recognize that we need to honor Alex’s wishes and dreams, not ours for her – and that is the challenge.
So, for now, Alex does have down syndrome, and despite the many vacations T21 takes, there are still times when Alex wants to be a ninja warrior, and that’s okay!