Wednesday, July 28, 2010


I feel somewhat silent. I love writing and telling stories about our silly family and updating everyone on the latest news, but for some reason this week, I just feel silent. I am not sure why.

In the past week, I think I have heard "retarded" at least 10 times used by people in the elevator at work, on the shuttle bus out to our car, at the grocery store, etc.  I have also heard 2 different people in the past week make fun of someone by telling them they should ride the "short bus".  I hate both words and the way people use them - I hate that our society is SO LOUD!  I remember going to Romania and realizing that Americans are incredibly loud and pompous compared to other citizens in other countries.  These people using these words said them so loud that everyone around could hear, and they didn't even think of who might be offended or hurt by them, there was no filter.  I feel like this entire 'freedom of speech' thing has really gotten out of hand.  Because now people say things and forget that their fellow humans are around and that sometimes their words can hurt.  And we shouldn't want anyone to hurt.  But no, we are Americans, and we have a right to say whatever we please and if someone is hurt by it, then that's their problem.  What a horrible attitude to have. For some reason the "short bus" comments really stuck with me.  As a parent of a child with special needs, those comments and words burn in your soul.  You cringe each time they are used and they really hurt.  Everyone gives excuses, but really, can't you find a better word?  The short bus - I suppose those comments hurt because I hate what they represent. They represent separation. They are literally making fun of the people in those buses when they say them.  Those people aren't cool enough to ride on the regular bus, so they have a bright yellow short one they have to ride on.  Don't people realize how demeaning it is to say such things?  And don't people see that the people in that bus are impaired in some way for one reason or another - why make fun of them? Why make fun of people who are different?  In this great country of ours, where 'all people are created equally', we continue to give labels and separate.  I do this as well. I live in St. Louis city - very ethnically and racially diverse - and I find myself giving labels too. It's hard to overcome labels. When I see a short bus I smile - there are probably people on there like our Jack or other friends we have met through blogging, and them I am slightly sad because I know someone will make fun of them or the fact that they are on that bus.    I realize they are on there for safety and to accommodate special circumstances, and yet our society makes fun of them...why?  Our society insults someone by telling them they should be on that bus.  And I am saddened by this.  I already feel like our family has been separated by so many others because of our circumstances. An example - I heard about research going on that is linking a higher 'risk' for down syndrome in mothers who have previously miscarried.  I was interested in this for personal reasons.  Anyways - I shared this info with a friend of mine, and she mentioned that she hopes that isn't true cause people miscarry all the time.  She didn't realize what she was saying, I know her heart too well, but what she said without really thinking was, " I hope that isn't true because that would mean more people with down syndrome would be born".  Once again the notion that people like our Jack aren't good enough and we should hope and pray for less of them. And there's the disconnect, the separation. I really really struggle with this.  I know most people don't  'want' a child with special needs.  They don't want one because they don't want to see their child struggle or be different or not do the things that they do.  But this is folly.  Why do we see success and fulfillment so narrowly.  Can someone only be successful or live a fulfilled life if they graduate college, make a lot of money, have a nice home, car, speak correctly, walk, run, play sports, etc?  I don't think so. I know many people who have and can do all of those things and I am not jealous of them nor would I call them all successful or fulfilled.  Jack has changed us so much.  He loves so well.  He enjoys and soaks up life.  He has the best smile and biggest heart, and yet he can barely sit up, he isn't walking or talking and he will probably never drive a mercedes.  But he is already successful to us and has filled our lives with such joy.  And I am sad that he has to grow up with labels and separation from teachers, school systems, family, friends, sports teams', etc.  A large group of us moms with children with DS have been writing into Ellen and Oprah, hoping that they would do a show or segment on DS awareness.  That we could tell stories about our magical children and the lives they lead and that this big "X" society has placed on them needs to be lifted.  These labels need to go and we need to start celebrating the special gifts these people bring to our society.  I guess I have been silent cause all of this have been floating in my head.  And now I am done.

Thanks for listening.


  1. I am so encouraged and inspired by you.. I have worked with children with DS in the past and they fill my heart with such joy! The light that shines from these happy little souls outweighs all of their "disabilities" don't you think? I love keeping up with you and your sweet family - Jack is precious! You are a great mom and a strong woman - thank you for such inspiring thoughts :)

  2. First off...(((HUGS)))

    I was watching an old episode of "Moving Up" on TLC on Sunday. A wife was angry with her husband and said "He's being retarded". It cut me to the core...not just because she said it, but also because the producers of the show didn't feel the need to cut it out. The it's-just-a-word excuse doesn't fly with me. There are a lot of other words that are "just words" that society has deemed inappropriate.

    I dream of and pray for a day when people truly see that Ds isn't much different than being left-handed or have red hair. Life with Ds is GOOD!

  3. A wonderful, wonderful post. I hear the R word so rarely, but did hear it once this week, and I nearly got whiplash turning around to see the person who said it. She was young and careless. And you are so right - they don't know they're saying anything bad, but society allows it and perpetuates it. Our blogs and our Facebook status updates, hopefully, will change some minds, one at a time.

  4. We are on a mission, it came with the sweet package we delivered. Your Jack and my Em, they gave us sight,and we will pass it on.

    People will see what we see if we show them and I know we are!

    Great post!!

  5. Just a side note- when I took Lily to her 6 month check-up with a neurologist who specializes in ds, I mentioned the ds/miscarriage supposed link. He said there is absolutely no connection. I had been curious as well.

    Okay, TOTALLY just my 2 cents here- I know I will probably stir up the pot here:) But when I hear the R word, I do NOT associate it at all with my Lily- I really don't!! There is nothing horrible about her, no connection to any ugliness anyone could dish out to her, so it just doesn't stick at all. I know, I'm probably too Polly-annish, but I just think a lot of times people really don't mean to be insulting, they just have never experienced the blessing of that magical extra chromosome, so they don't know? I know there ARE people who are deliberately hurtful (like the short bus comments) and I'm SO sorry you have experienced that. I just look at your Jack and how adorable and WONDERFUL he is, and I think if people had a Jack or a Lily in their lives they would "get it."