February 7, 2010

Alex the human calendar

I like to share little snippets of Alex’s life, while talking through our day to day challenges and triumphs. There is always something to talk about, something new to share or follow-up from previous entries. I love doing this; creating a diary I will use as my memory book by following Alex through this year in her life.

However, as I was recently reminded at our MDC meeting (multi disciplinary conference), Alex will be 17 in June. She will graduate from high school in 2012 and be eligible to enter a transition program until she turns 21. I need to think about the future a bit more, and use what I am learning in the present to help create a positive and bright future for Alex.

I know there are many families who want their disabled child to live with them as adults. To me, this is very personal decision based on a number of factors, most importantly – feeling confident your child is safe. In many cases this could be home, in many cases there are opportunities for our children to live safe lives outside of the home. I will be exploring these options as the year goes on.

Our dream for Alex is to live as independently as possible, with a job, friends and a relationship – if she finds the right person. This dream has recently been reinforced as we see friends become empty nesters. As much as I love my kids…I am really looking forward to those days and years that John and I can come home to a clean, empty house. No big dinner to make, no laundry to wash and minimal house cleaning.

As I think about Alex’s future, I am assessing her current skills, in terms of how these skills will transition to her adult life. I recognize she probably will not be a rock star, professional skier or professional actress. She will still enjoy these activities, but unless the world changes dramatically, these loves will become avocations, not vocations. So I ask myself - What else is Alex good at to help her become a successful adult?

The first thing that comes to mind is keeping track of her schedule. Despite the fact Alex does not ever ever hurry, she knows exactly where she is supposed to be and when. She knows her class schedule, her sleep-in day (Mondays), her basketball schedule and the time of every meal. Alex keeps me on track.

One of the tools Alex uses is the calendar. She reminds me every Sunday night to print up our weekly family calendar; once printed she “corrects” my calendar by adding her basketball games and other activities that I seem to forget (see I do need to be an empty nester).

She compares this draft to her school calendar – which is part of the assignment notebook every student receives in the beginning of the year. Once finalized, I am allowed to post on the fridge and another week in our lives occurs. Seems so simple in theory!

I admire this ability of Alex’s so much. I believe that scheduling, and understanding transitional events in Alex’s weekly schedule are huge factors in ensuring a successful adult life for Alex. Just like me, Alex does not do well with surprises, and just like me she wants to know what is going on every minute of her day. The only difference between us; it is easier for me to remember events when they are in my head, Alex needs to see them.

I often say that Alex is magical – and I believe this. She has to, and will always have to compensate for her disabilities; no one else can do this but her. We can teach her some of the tricks/tools she needs, and help keep her safe. But in the end, Alex is the one that creates this magic in her heart and mind that allow her to live her life to the fullest.

As I’ve said before, and I will say again and again – I believe Alex has a lot to teach all of us. We need to learn how to listen.

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