June 27, 2011

The people in our life!

As Alex gets older the connections we have in the community will be harder and harder to maintain. Her Special Olympics team ends at 21, and currently there is not an option for her to continue. Her school community will graduate and move on. Alex will stay at home for a few more years. The other supports we have in place, such as speech therapy will disappear when Alex leaves the school system and we will have to pay for private speech.

One of my biggest fears and a situation I know is all too common in our rural area – isolation. We are working on a number of different strategies to ensure Alex is not isolated and can have a fulfilling life, Alex deserves to feels like a contributing member of our society, have a job, a place to live and a partner. Just like me, just like Courtney and just like Tom.

Alex and our family are involved with person centered planning and two specific tools: Taking Charge and PATH. I will describe those programs in the next couple of weeks. I have also co-founded an asset based community development organization. We are called Valley Life for All with a mission of:

Creating access to resources by connecting opportunities for people of all disabilities, their families and communities, From Aspen to Parachute

We have recently received our 501c3 designation so are in the process of trying to raise finds. Wouldn't it be nice if passion and funds were interchangeable? I will write about VLFA in the next few weeks, but if you are in the Aspen Area on July 23rd, stop by our booth at the Aspen Farmer’s Market. The city generously donated space so our local self-advocates can showcase their talents. We have writers, authors and motivational speakers who will have the opportunity to sell their products and hopefully gain new clients!

In the meantime – I am so thankful for the people in our lives today. Recently Alex attended the Challenge Aspen Art Camp. She created art work for a week (available for free to those who would like) and on the last day all the participants showcased their work. Alex also sang “Let it Be” for the families, and of course relished the applause.

I still am not sure why Alex is still interested in scars, but she is certainly willing to share her self portrait.

The Roaring Fork Mountain NiƱo’s also had their benefit this past week. And what would a benefit be without Alex Bender singing? Once again we are thankful for the band and the folks who applauded and listened to Alex.

Yes, we have been fortunate, but I feel in many ways, as Alex gets older we may have to create our fortune. But as I have said many times, it is worth every lost night of sleep, every phone call and every penny. Alex is so special and has so many gifts; all she needs is a little assistance. I am honored!


  1. I worry too about isolation. I know now, when Claire is small, it's easy to create social situations, but that it will be harder as she gets older. I'm looking forward to your next posts.

  2. Beth is also doing person centered planning. We meet with her vocational team once a year to go over her dreams in life and her goals for employment.

    Here in Washington, Special Olympics is available to athletes of all ages. There is one team of men and women over 50! Beth wasn't automatically invited through the schools after graduation, so we had to find the person in charge, call him and get Beth on the lists. She now participates in SO bowling and track.


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