Instead of being happy that my son is here, in relatively good health and is generally a great kid...... I mourn what his life should be like if there were no obstacles. No challenges associated with having Down Syndrome.
Every other day I can be in denial about the challenges that await my amazing son when he gets older. The only days I can't be in denial are the days when I have to run some errands & Meredith inevitably NEEDS Wendy's (a.k.a the burger house). Can't make it through her day without it. Fine. If she's going to eat...... In the end, I must be a glutton. She never eats & the toys are crappy with no real relevance to the pop culture of a preschooler.
At our Wendy's there is a program for adults with special needs. They're a diverse group of people who work in harmony with the typical 9-5'ers. There's one difference. The folks with special needs are never doing the behind the counter work. They're only ever doing the grunt work. Cleaning up. In this group, there are usually about 2 people with down syndrome.
And like the horrible person I feel like, I stare at them like I'm looking into a crystal ball. I feel like I'm looking at my son's future. I never allow my emotions to come out and I act as if I am fine until we leave. When I get everyone strapped into the car and sit down in the front seat, I cry. I cry because I want more for my son. If he starts out cleaning up..... great, but I want more for him. It happens every time we go there. I just want to scream..... "you can do more!!!! I know you can do more. Please want to do more."
I'm so sorry Down syndrome community that I cannot just accept that my son will forever be dependent on others. I'm so sorry that I get so upset each & every time I hear about, read about, etc..... that the gap between typical folks & folks with Down syndrome only gets wider as they get older. It makes me sad. It makes me angry. I feel like a horrible mother who isn't deserving of such a wonderful little boy each & every time I feel like this.
And I always wonder if they notice me staring & then see Sean and understand. I always wonder if older people with Down syndrome can instantly tell when someone else has Down syndrome. I wonder if they just wanna scream at me for being so rude?
Did they choose this job or was this the only thing they felt was available to them? Did the "agency" find this program & everyone just fell in line? Did they speak up & get shot down (or worse) & now feel insecure to try for more?
I think I need to really stop shopping in this shopping area. While I'm at it, I need to stop reading blogs that upset me about adults with DS too. None of this is doing anything to help maintain my morale.
Oh, sweetie! Hugs! We've all been there. It helps me to remember that Eon is not that worker. He's Eon. We'll do everything in our power to get him a job he loves. That may well be washing tables (he sure loves to pick up now @ 2 1/2yo). Now, I have a question for you. When you see middle aged women working behind the counter at Wendy's, do you worry about Meredith's future? Do you wonder if they're happy or if it was the only job they could get? Do you worry that she's going to get stuck in a dead-end job she hates? Why not? My guess is because it's too far in the future to worry about and because you're confidant in your parenting skills that she'll succeed. Why isn't that true for her brother? Just something to think about. :)
ReplyDeleteThanks Tara. Amazingly enough..... if I see a middle aged woman behind the counter, I look at how tired, old, etc.... she looks. And I probably worry more about Meredith and her future, the future of our country, Sean's future, my future, etc. when I see that. I should probably just stay out of fast food joints. LOL It'll be better for all of us.
ReplyDeleteThere is a man at my office (in his mid-40s) with DS that works in the mailroom. Everyday he takes his cart and walks the floors delivering mail. Let me tell you - he is the HAPPIEST person I've ever met! Here he is doing a job that doesn't require a lot of mental or physical effort, but it makes him so happy to hand me mail, pick up a package and sneak a snack from our kitchen. And here I sit, with an MBA and a high level position and I'm miserable. I envy the love he has for what he does. I wish I had that! And it genuinely makes me happy to see him happy.
ReplyDeleteMaybe those people at Wendy's don't think they have a choice - maybe they don't know they can strive for more - but maybe, just maybe, they are happy. I hope they are! :-)
I love your honesty...because I too have felt these same feelings. I remind myself in those moments that my daughter with Down syndrome is an individual first. No limits on her...high expectations. Whatever she does in her life, it will be her best and I will love her and accept her for that...just like my other kid. I have not yet been to your blog and enjoyed reading it! :)
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