November 16, 2012

Our thanks for 2012!

When I was a little girl I was often asked “what do you want to be when you grow” and although my answer changed often and still does change many of my dreams for my future were realized.

When asked what Alex “wants to be when she grows up” she answers just like I did. She wants to have a husband, a job and lots of friends. She wants to play sports and participate in community activities, she wants to choose her own future and be a part of it. We will honor this.

But, for many of our young adults today choice has been compromised. I do not mean to offend anyone, but in my humble opinion our children’s’ future has not been compromised by families or individuals it has been compromised by the system and left families feeling depleted and scared.

When a child with a disability starts school an individualized education plan is set-up. This is generally a great thing and enables families, the child and the educators to put the right supports in place for the child to succeed in school and hopefully their rightful classroom. When the child gets older he/she is included in the planning (if done properly) and the “nothing about me, without me” strategy employed.

But an individualized education plan or program is just that..a plan or program. It is a snapshot in time that does not address the “what do you want to be when you grow up” question that is part of every child’s education.  When our children get to middle school the IEP plan sets a goal of "graduating" to the transition program.  Starting at age 14 our IEP stated that the family (not the child) has been advised to contact the local CCB (state funded agencies that provide services for people with disabilities) and be put on the very long wait list for adult services

Alex was never asked if she wanted to go to college, never advised if she got the right number of credits she could graduate from high school with her peers.  Alex was never asked if she wanted to be in the school play or play sports, instead she asked, and her wishes have been honored.

Alex was never asked if she wanted to “graduate” to a segregated classroom with nine other people with disabilities and learn about cooking. She was never asked if she wanted to get on a bus with nine other people with disabilities and go to the bank to learn about money. This was all assumed on her behalf. But we were lucky and although Alex was never asked a lot of things, she still knew this was not “what she wanted to do when she grew up” and with our assistance it was removed from her IEP.

As far as her future after high school, “when she grows up” Alex was never asked if she wanted to live in a group home and work in a segregated job. She was never asked if going to a day program with people with disabilities is what she wanted for her future. This was all decided by the system before she could even speak. Alex does not want this “when she grows up” and is not on a long wait list for adult services.

The system is changing, and this is my thanks for this Thanksgiving season. Parents before and after me are listening to their children (they always have), and hearing what their kids “want to be when they grow up”, and demanding these dreams be honored. And as we ask for choice and the support to live our choice the system is growing up too and hearing us.

Happy Thanksgiving!


  1. Bravo Gary!!!! (p.s. read your book and I LOVE it, I will get some time and write a "review" over the next week).

  2. p.p.s Alex ... I love this photo of you!

  3. Great post - hooray! Have a great holiday! Has your son decided yet?

    1. Hi Lisa - Tom applied to UVM. Northeastern and CU - Boulder. I am not sure if he applied to UVM to keep me happy or because he would consider it - if he does not get into Boulder. Thanks for checking - hope all is well!

  4. You are such a wonderful asset to those of us just beginning this journey. Maybe if we ask the tough questions, stand firm, and band together we can make some changes. Thank you.

  5. Hi, thanks for the comment. The Internet is providing so many opportunities for new families to share information and learn there are lots of options and choices available. I am so excited to see what this generation of children with Down syndrome will accomplish in their lifetimes.

  6. Just to let you know I've added your blog to the Squidoo Lens as requested :)

    Kim :)

  7. glad you re-posted this :-) We are still asking, and the IEP is starting to change... But the system is not asking yet...


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