Friday, January 6, 2012

Down's Syndrome: the education of me (part 3)


Start with part one :)

As we bundled our sweet baby and prepared to take him home, I had no idea what the future held for us.

We still hadn't told the kids, and they were going to Nana's house for a week or two anyway.  My mom stayed to help me with the baby since I had my first-ever C-Section and William was recuperating from back surgery.

Shortly after we settled in at home, I began doing lots of internet research.  My husband had already beaten me to most of it.  He had registered us with the Down Syndrome Guild of Dallas, who sent an information packet about 4 inches thick.  I still haven't read any of it.  There was a calendar with pictures of Down's Syndrome babies and kids.  I couldn't even hang it up.  The truth is, I didn't want my son to be like those kids.  I wanted him to be normal.

It was about this time that I started writing this blog post, but didn't publish it until Aaron was almost a month old.  It was also about this time that I realized that it was politically incorrect and insensitive to say that my other kids were "normal".  I've learned that the correct term is "typical". (Don't worry - I still struggle with it too).

The things that really flashed in my mind through all this time are all the times that I've laughed when someone was called a " 'tard" (short for retard).  All the times that a friend loosely hit their chest with a limp hand and said "dir-de-der".  The "tooty ta" dance that makes everyone look like they have "special needs"

and laughing as I said with my tongue planted to one side of my mouth "efferyone's specthial in thair own way."  I'm ashamed.  I'm not nice.  I'm a judgmental person, and now I am a mother to one who will be so judged.

This is what hurt the most; I knew that he would face people like me.  Nice on the outside.  Sweet to your face; laughing behind closed doors.  Not at you in particular, but at people like you.  Ouch.  Self-evaluations are painful under "normal" circumstances.  When it's so close to home the examination occurs with razor-sharp precision and the pain that accompanies that knife.

I determined to be a better person (for the bajillionth time in my life) and to eliminate the aforementioned activities.  What is harder than that though, is changing the way you view the people.

Our first Down Syndrome Guild meeting (quarterly meeting for new parents) was accompanied by a presentation of the "Team Do Something Great" that was a part of the SLANT 45 Film Project.  I was OK meeting the parents of the babies.  I was OK meeting the parents of the teens.  I was slightly creeped out by the teens fawning over Aaron (especially when one severely affected boy's dad kept saying "you were just like that when you were a baby.  You looked just like that."), but I completely lost it when the teens performed.  Here they sang, performed gymnastics, told jokes and other "talents".

I was sitting there, judging through outsider's "typical" eyes.  I saw mediocre at best.  I saw the "crowd" applauding non-accomplishment.  I was overwhelmed with a feeling that I couldn't do "this".  I couldn't applaud mediocrity.  I couldn't bear to think of this being all my son might ever accomplish.  I heard echoes of my mother's voice "he will probably never leave your home."  My elderly neighbor's words on hearing the diagnosis: "that's too bad - at least you'll always have him with you."

I retreated.  To the bathroom.  I sat in the pale green stall, hyperventilating and sobbing and thinking "if there were a window in here..."  After 15 minutes, I gathered myself together and dabbed in vain at my eyes - they refused to stop leaking.  I went back to the group where my husband was enthusiastically networking, meeting other parents, cooing over their Down's Syndrome Babies (that's what I saw, Down's Babies).  I sat down at the table, with my back to the room, hoping that no one would speak to me.  I didn't want to be there.  I didn't want to learn anything new.  I didn't want to join a new club.  William called to me to meet some people.  I tried to ignore him, but he persisted.  I played nice until we could leave, planning to never return.

To be continued...

Part 4




Don't stop - there's lots more good stuff...

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