September 29, 2009

What's the rush? - or life on Alex time

Another myth that I have come to believe about children with down syndrome is what I call the "stop and smell the roses" myth.

I learned early on that our special kids like to enjoy the moment and not rush through life. I find this to be very true, very refreshing and very frustrating!

The reason I bring this up now - we got an e-mail today from Challenge Aspen - an incredible organization serving the recreational needs of disabled children and adults. This is the organization that taught Alex to ski. Also, for the last two years CA has partnered with her Special Olympics team to provide instructors for the kids. This way Alex skis with her Special Olympics team and Challenge Aspen - exercise is good!

Alex does not need a true instructor anymore, she is actually a very good skier. She does need supervision, however,  or she will stop and smell the roses all day, or in the case of our ski mountain, enjoy the views. Alex only likes to ski with us at the end of the day, as we do not like to stop too often to enjoy the views. Does seem a bit wrong doesn't it?

So we still work with Challenge Aspen, and their buddy program. Buddies are volunteers who spend the winter months skiing with the disabled. Alex has developed very close relationships with a few of these incredible people and we try to get her to ski with one of these friends.

When we got the confirmation that a buddy would be available for Alex, the e-mail came with this very nicely worded addendum.

"But there is something I have to bring up…we can’t have Alex taking an hour to get ready in the morning. Once she’s on the hill I hear that she does great, but we have to somehow get her out of the habit of taking so long to get her ski clothes and boots on."

I believe, it really does take Alex a bit longer to get ready. She does like to be independent and putting on ski pants, ski boots and a helmet does take a bit of time – but an hour? I think Alex is working the system - she gets lots of attention in Challenge Aspen Office and it is warm. Lots of roses there! Just like me, she loves skiing when she is doing it – but the preparation can be challenging. Alex sets her own time.

This has been one of our concerns over the years with Alex. She takes longer to get ready in the morning, longer with her meals, and luckily we are not in a drought – her showers last forever. She enjoys picking out her clothes (and postponing our discussion about dressing like a girl), her food and the feeling of water on her body. Why rush?

The list goes on and on – she walks slowly, cleans her room up slowly (probably intentional) and is the last one to get in the car when we need to get somewhere. Once again -I do not believe she feels the need to ever hurry.

Obviously, we make adjustments for Alex and give her extra time, but as we found out today, sometimes we do not give her enough time. Or I might even suggest, it does not matter how long we give her, she is just working us again. We will try to get to the mountain 30 minutes earlier this year and see how it goes – but when Alex decides to stop and smell the roses, or talk to the folks in the CA office, or sets the time, we really do not have too much control.

What we have all learned from Alex is that we should stop and smell the roses. We do need to appreciate the small stuff. Taking time to talk to our friends, or relax a bit, is necessary to maintain lower stress levels. The cute puppy on our walk, or the baby in the stroller do warrant a few extra minutes of our time. The book with the pretty pictures or the comics in the paper do need a few extra minutes.

Alex is the one who wants to spend the time to have family game night. She is the one that cherishes the few minutes we can all spend together, and she is the one that supports us all in our activities. She will go to every play that her sister is in, every snowboard competition that her brother participates in and every tennis match I play.

Alex does this all in her own independent time. She doesn’t rush through life, nor does she waste a moment in her own life. She is the most magical, loyal and truest person I know.

There really is a lesson in this for all of us.


  1. In our house we call this, "Down time"! It can be frustrating at times, but it does provide time to practice patience.

  2. That's funny...humor has helped us through everything!


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