Plan actually begins at birth, subconsciously for us, but still there. As with all three of our children we dream of their futures and this involves planning. Schools, sports and other extracurricular activities are all a part of what forms our children’s futures and we adjust as interests are formed. We do not micro manage, merely try to guide.
My hopes and dreams for Alex are the same as those for my other children. I want all three of my kids to have good jobs, happy relationships and lives that are filled with love. I want them to give back to their communities and be grateful for the opportunities they have in their lives. However, in Alex’s case we do need to be a little more diligent and work towards a different type of future; one of independence, but also one of safety.
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, through research, Alex’s future will be different than Courtney's and Tom’s and this is not a bad thing at all.
I learned 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. All that means is Alex will not give me a grandchild, if that is the best thing for her, which is the way it will be.
Our current planning assignment, and one that will last for the next five years, is to determine a safe place for Alex to live. John and I love to talk about the days when we become empty nesters. We love our kids, but I know we can love them just as much, when they live somewhere else. Courtney is already in college and Tom will be leaving in two and a half years. Empty nest syndrome will be happening in our very near future.
As parents of a child with special needs, we do need to work a bit harder than most of our friends to make our dream a reality. College is a possibility, as is the law mandated Transition Program that allows Alex to stay in the public school system until she is 21. 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 .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 and we must honor it.
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 dream, not hers. Her career must be something she enjoys, for example she is very organized and detailed, and perhaps her career would utilize these skills.
Very simply put; we dream of a life for Alex where she is independent, but that may or may not exist in the way I imagine. I envision a place where Alex is safe and protected from danger. I hope for a place where Alex is surrounded by friends and people that care about her success. Whether this is in a rural or urban environment is not important to me. It is important that Alex can work, be responsible for herself and feel fulfilled. As with all dreams we must plan, plan and plan some more. We will succeed, the stakes are too high to fail.