Monday, October 11, 2010

Looking Back

Found some journaling I did a while back and thought I'd share.  Ten whole months ago.  Some things have changed and some are the same.  It's what I was feeling then.

At work a man came up and asked where to find ear drops.  He was shorter than average.  He had a jolly looking plumpness to him.  I couldn’t help but notice his almond shaped eyes, and the way he sounded when he spoke.   I knew  he had Down syndrome.  Only the second person with Ds for me to encounter at work.  I wanted to get out from behind the counter and hug him… lol…  oy.  I did abandon the customer I was already engaged with to help this jolly looking man.  I was completely distracted, hoping someone would help him find what he needed, and I was so happy when he decided to check out and came back through my line!  I probably could have talked to him all day.  Time stood still as I enjoyed and analyzed him.  He said he was about to head out to see the Globetrotters.  I was jealous.  I asked if he was going with on a bus, or with a group of friends, and he said, “No, I’m driving, I have to get back for work tomorrow.”  I was surprised, although I shouldn’t have been.  The transaction went to fast.  I still had too many questions.  I badgered the carryout Julie, she knew him, I wanted to know how old he was, what his job was… and more.  He looked older, and I wondered how old.  I had just read a few days prior the world record holder for someone with DS was 80, but before that it was 68.  This man looked in his 50’s.

I felt a little bad.  Why do I want to hug strangers?  I wouldn’t expect a customer without Ds to hug me, although some have…  but I have yearned for hugs from people with Ds when I have encountered them.  Maybe it’s because of the first lady I met with Down syndrome, Tammy.  We met in the grocery store.  I hardly remember having a hug that good ever.  It was perfect.  Or maybe those hugs make me feel like it’s going to be okay.  I like to have a tough exterior.  I KNOW everything is going to be okay.  Things are great now, but there’s still a stigma about the situation that sometimes it’s hard to shake.  In reality, everything is fine, but in “normal world” I should have issues…  Or not, but I heard from so many people since the beginning that I was “doing so well.”  I wondered, um, should I not be?  I mean, what’s wrong?

*I saw Tammy again, I excited said hi and went directly to her for a hug.  I don’t know her, but I love her.  I love her hugs too.

I read a comment beneath one of my friends pictures.  She was complaining about the way she looked, another friend tried to build her up by cutting down her brother…  Then my friend commented back, “At least I don’t look mentally retarded like him.”
Do “mentally retarded” people not look good?  I’m confused.  My son is gorgeous.  I was told at a conference about Ds, given by someone who has a son with and is a researcher of Ds that “everyone with Ds has some form of mental or physical retardation.”
I know my friend wasn’t trying to offend me or anyone else, but it stung.  It was my first encounter with this feeling.

Speaking of feelings…
I don’t like when people say “They’re (meaning people with Ds) the happiest people.”  --”They’re”--
Ick…  my son is an individual.
I don’t like that my ECSD teacher refers to people with Ds as Downs…  she does it A LOT.  At first I thought this wouldn’t bother me, ya know, when I was reading everyone else’s blog saying that it did.  People aren’t trying to be offensive… BUT, she’s a teacher, working with kids who have Ds and the parents of those kids.  She should know what is politically correct.

K’s ENT did the same thing, “Oh, I worked with the “Downs” in Oklahoma."

Another thing I have a little issue with…  I have observed that while parents of kids with Ds advocate that they want their children treated like anyone else, and they (the parents) emphasize how their children are more like the typical developing child than not, and they emphasize their children are not “Down syndrome,” but they are individuals…  while they do all that it seems like some of them use their child’s diagnosis to get things.  They play the “Ds” card.  Kheaven is only three months… I may do it someday, but I don’t know if I think it’s right or not.
I also saw a status update that got me thinking… “I love someone who has Down syndrome.”  -- I thought about copying and pasting it, after all, I love someone with Ds too!  But I thought about my other updates…  the things I say…  I would NoT say that.  I would just say I love Kheaven.  I would not single out my children, or anyone else with a differentness in a status update… I would not say, I love someone with glasses, although now I think maybe I should to get the update poster thinking… I would not say I love someone who has IBS…  you get my point.  So yes, I do love someone with Ds, but I just love him…  either way.  It's the same with my other kids.

A break from the negativity… Last night I worked with a woman who has a background in early childhood education.  I told her about K having Ds and she was cool…  After I talked for a bit she said, I’ve worked with some kids who have Ds and they’re not the “happy all  the time” people always say they are, they have normal feelings and get upset like anyone else.

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