October 14, 2009
Shoot for the Stars - Careers
When Alex was born we grieved for the future we imagined she would never have. I know this is the reaction parents have when a child with special needs is born. We perceived her future to be drastically changed because she has down syndrome. I now know – that her future will be different than Courtney's and Tom’s and this is not a bad thing at all.
I learned that Alex's future is not about me - it is about her. Perhaps she will not have children, which is very likely. Men with down syndrome are generally unable to have children and women have a 50% chance of having a child with down syndrome. But all that means is she will not give me a grandchild - so if that is the best thing for her - then that is the way it will be.
Our current assignment - and one that will last for the next five years - is to determine a safe place for her to live. John and I love to talk about the days when we become empty nesters. Don’t get me wrong, we love our kids, but I know we can love them just as much, when they live somewhere else. Courtney is headed off to college next year - and Tom in four years - so this is becoming much more of a reality and we are psyched!!
As parents of a child with special needs - we will need to work a bit harder than most of our friends to make our dream a reality. College is a possibility (See Shooting for the Stars – College). But, we also need to think about the long term.
In my research, I have found a number of assisted living facilities for disabled adults. However, I have not yet found something that I think is right for Alex, and since these places have very long waiting lists, I continue my research. I think Alex could live independently - with only a little bit of assistance. That is our dream - Alex's and ours.
This also means Alex will need to find a fulfilling job to pay her rent and her bills. When I say fulfilling - I mean to Alex - not to me. She doesn’t want to be a Vice President at a large Bank - nor a Real Estate Developer - those were our dreams - not hers.
I often search for articles about disabled adults and careers. There are a number of resources available - but when I found this link - I thought I would share it. It involves two adults with down syndrome that I have known for a long time. Their parents are involved with NADS - and this comes from a 2006 NADS newsletter - it is still relevant and these adults are still doing well.