A genetic predisposition causes 3 sisters in one family to have children with Down Syndrome. These are their stories.
Friday, September 26, 2008
Guess I'm not over it.
Yesterday when I went to the grocery store, I saw a man with Down syndrome bagging groceries. It made me sad. I want my son to be more than a bagger at a grocery store when he's 40.
I sent plainbellied an article about adults with Downs and the job situation there. This is a serious issue which we'll have to address further along in this journey. Roughly 2/3 do not have paying work and those who do mostly work part-time. Working full time might cause them to lose SS benefits despite not making enough to fully cover their own costs. The first concern here is expectation management. I keep bumping into painful realities that don't match my expectations. Then my expectations have to change or I have to do some advocating or both. It is a journey. Secondly, all of our children need opportunities to develop meaningful skills and contribute. It is in our hands to help them prepare for the most enjoyable future possible. One of the variables here is what will our kids want? I'm betting they'll having opinions and make their own decisions. In fact, I'm counting on it.
sorry about my deleted post I had some random typos and I couldn't figure out how to edit them, so I just pulled down the whole thing and started over.
I can totally understand what you are feeling as I have felt the same way. However, I have come to realize that what matters is what makes our kids happy - not what we would be happy doing or what we want them to do. I actually saw a man with Ds bagging groceries last week and he really did seem happy....almost every person that walked by while I was in the check-out line knew him by name and he smiled and had quick exchanges with all of them. He really did seem happy being there and the interactions with the customers. Just something to consider!
6 comments:
Yes. Me, too.
p.s. when is your due date?
I sent plainbellied an article about adults with Downs and the job situation there. This is a serious issue which we'll have to address further along in this journey. Roughly 2/3 do not have paying work and those who do mostly work part-time. Working full time might cause them to lose SS benefits despite not making enough to fully cover their own costs. The first concern here is expectation management. I keep bumping into painful realities that don't match my expectations. Then my expectations have to change or I have to do some advocating or both. It is a journey. Secondly, all of our children need opportunities to develop meaningful skills and contribute. It is in our hands to help them prepare for the most enjoyable future possible. One of the variables here is what will our kids want? I'm betting they'll having opinions and make their own decisions. In fact, I'm counting on it.
sorry about my deleted post I had some random typos and I couldn't figure out how to edit them, so I just pulled down the whole thing and started over.
I'm sure with your help your son will be able to do many great things.
I can totally understand what you are feeling as I have felt the same way. However, I have come to realize that what matters is what makes our kids happy - not what we would be happy doing or what we want them to do. I actually saw a man with Ds bagging groceries last week and he really did seem happy....almost every person that walked by while I was in the check-out line knew him by name and he smiled and had quick exchanges with all of them. He really did seem happy being there and the interactions with the customers. Just something to consider!
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