September 21, 2011

Is Alex really that different than her peers?

This is a question I ask myself almost every day. Obviously, Alex is different than her peers because she has an extra chromosome which causes developmental delays across the board for Alex and all people with down syndrome.

Alex requires supports, services and active advocating on her behalf. Alex also has to advocate for herself, and she does a pretty darn good job at it. But it is who Alex is, not what she has that defines her. So I ask myself again, is Alex really that different than her peers?

Over the course of this journal I have gone back and forth about Alex and life after high school. In the beginning I had assumed Alex would get a certificate of attendance at her graduation ceremonies and stay in the public school system until she was 21. Then we looked at the local Community College and considered staying with the transition program for a year. Then we were not sure.

But there is one theme all these conversations have in common; they were about “we” not about Alex. I broke my cardinal rule, I made assumptions about what is best for Alex without asking her, and I am ashamed.

Alex is 18 and knows it. She often reminds me she is an adult and can make up her own mind. She also wants to change her name to Ashley, but that is a different story. Although we are Alex’s legal guardians, she still deserves the same choices all 18 year olds have. Alex wants to graduate from High School and go to college, just like her peers.

When Courtney was a junior in high school we went on the college tours and talked about where she wanted to go to college. I never made the assumption she would not be able to go to college, I made that assumption for Alex. We have not gone on college tours, nor have we talked much beyond the local community college. I did not work with her like I did with her sister. I am very disappointed in myself.

Over the summer and unbeknownst to me, Alex started researching schools across the country, just like millions of other high school students across the country. We began to get phone calls and information packets from places like Princeton, The Colorado School of Mines, Rutgers, Columbia College and many other schools I was not familiar with. Just like her peers Alex wants to go to college everywhere. I am embarrassed I did not assist her.

However, in order to go to college Alex needs to graduate from high school. I am always involved in Alex’s class choices and insist she is placed in regular ed classes with an assistant, but I never paid attention to the graduation requirements. I had no idea how close Alex would be to getting an academic certificate; it just did not matter to me (note the “me”). But, it does matter to Alex and with the courses Alex has taken over the last four years, due to the very supportive and inclusive counselor Alex works with, Alex will graduate with all the credits needed to receive an academic certificate on June 2, 2012.

Alex is not in the least surprised, she never expected less. However once again I am kicking myself for not believing this was possible. As a caveat, an academic certificate will preclude Alex from participating in the high school transition program. In many cases these can be valuable programs to help students with special needs develop the skills they need to find jobs and live independently. I support Alex’s choice, but it is certainly worth exploring for other students.

Recently I received an e-mail from the mother of a young adult with disabilities. Daniela is in college and doing quite well, read her story at Daniela’s Journey. Daniela’s Mom read about our (or should I say my?) confusion and sent me this great website resource thinkcollege. I have only briefly glanced through, but it is a database of colleges that support people with intellectual disabilities. I knew nothing about this, because of course I never looked.

I sent to the information to Alex, suggested she use this site to look for colleges and now she is in charge (like always). Wonder what phones calls and packets we will be getting next? I am committed to working with her just as I worked with Courtney, visiting colleges and helping with whatever else needs to be done. But in the end it is Alex’s choice, not mine!

Is Alex really that different than her peers? Absolutely not! Alex is graduating from high school, going to college, and then who knows what. Once again I am reminded of what an incredible gift Alex has brought to our family. Every day I learn a lesson, and in this case relearn and relearn; it is Alex’s life, not mine, and I can only guide her, not make her life decisions. I sure hope that lesson sticks, as I know her siblings would say I have not learned it yet.


  1. Thanks for the mention on your blog! I shared your blog with Shepherds College and they just wrote about your blog on their Facebook page. One note - you need to correct your link to Think College. It fails the way you have it listed now. It's

  2. I am proud of Alex i think more people with disablities sould go to collage u can do it alex

  3. This is a beautiful post Gary! I am such a bad friend to not keep up when there are such pearls for me here! I disseminated three copies of your book to a bunch of SW"s so I hope they lead to more business for you (and recognition of your greatness!).

  4. Oh and Alex's too! Or should I say Ashley :)


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