Monday, January 16, 2012

Why being the "normal" one doesn't make you the better person

I am still upset.  In a way that means this isn't about the situation, it's about something deeper.  More intricately wound into my being. 

We were waiting for Jack to come out of his class, and this sweet-smiled little girl walked through the lobby.  There was a look about her that I recognized from my brother's Special Olympic games.  An undefined mental handicap -- not Down Syndrome, but something else. 

"Super-charged Science?" she asked, with this little-girl sweetness I also recognized from his games. She was maybe 7 or 8?  

I nodded and smiled at her: "Yes, my son is in it."

An older girl of about 10 or 11 came through the lobby behind her, and said to this little girl (eye-rolling in my direction, and this irritated look about her): "Were you talking to that lady?"

I didn't like the eye-roll...or the overall feeling I got from this girl...but I decided to ignore it at that point, giving attention back to the first girl.  I smiled and said: "You were a big help.  You let me know I was in the right place, didn't you?" 

I guessed immediately they were sisters.   They were helping clean out the classrooms; they must have been children of a teacher. 

The older girl went into a classroom and started sweeping, then started shouting back at her sister: "Abby!  Get the vacuum!"  

Abby started towards the vacuum, and I whispered conspiratorially to her with a smile, "She should say please, shouldn't she?"  I winked at her and she smiled shyly back.

When Abby came into the classroom with the vacuum, I heard a thud, like a broom knocked over.  The older sister started railing at Abby: "Abigail!  You are so lazy!  You are so stupid!" A few more things shouted, along those lines. 

I cannot tell you how difficult it is for me to feel a violent rage towards children.

I cannot tell you how much violent rage I felt towards that girl in that moment.

I left Simone and Andrew in their seats and walked the 10 feet into the classroom.  Looked that little girl directly in the eyes and said in my creepy-calm-dead-serious voice: "You do not know who I am.  You might not care who I am.  But you do not talk to another human being that way."

All of her bossy arrogance was completely smashed and she looked back at me timidly and said in a small voice: "She's my sister."

Still creepy calm and not taking my eyes off hers: "I...don' who she is.  Does your mother know you talk to her that way?  No person should be called those names. That is not how you treat people." 

I was literally shaking.  I wasn't convinced I wouldn't burst into tears from the anger I felt. 

I turned and walked out, scooped up my children into my lap, still shaking - and sat there waiting for Jack to come out just a few minutes later.

Here's the thing:  I get it.  I do.  I have two mentally-handicapped brothers.  I know the complexity of feelings and the complicated siblinghood it brings. 

Being the sister of a handicapped sibling can be really awful sometimes.  Trying to explain a developmentally-inappropriate brother to your friends is embarrassing, awkward, and socially complicated when you're in elementary school...middle school is the worst...and into high school.  I still cringe a bit when my older brother calls me, because I know our phone conversations will be hard to understand, last a long time, and not have much content.  

Anyone who pretends it's only fascinating or sweet or noble or other things I've heard, they have no idea.  And that's fine...they wouldn't. 

But never...ever...ever was I allowed to treat my brothers that way.  Call them things like that. Taught that they were to be belittled.  Yes: We had our sibling moments and they drove me bat-shit crazy sometimes.  So do Simone and Jack and Andrew with each other. 

Asking your non-handicapped child to never be irritated or frustrated (or yes, even embarrassed) with their special-needs sibling is asking them to be an inauthentic sibling.  I knew I could close the bedroom door and tell my parents about my frustrations with my brothers and have a sounding-board.  

Honesty meant everything to me. 

And maybe this girl doesn't?  Maybe she has to be the Perfect Sibling most of the time, so it's all unleashed when her parents aren't watching?

Or maybe Abby gets talked to that way by everyone in her life?  It breaks my heart into a million pieces just to contemplate that she's treated that way.

At some point, I'll come down from the anger and heart-break and maybe feel a sadness for that older sister.  That she's missing out on the chance to form a heart that having a special-needs sibling can bring.  If you can be honest with the bad parts about it, there are these really incredible things to teach you: 

That people are actually much more about luck than effort.  Mental abilities...but it also extends to geography, family circumstances, all of it.  Whatever it was in Abby's DNA or happenings that made her handicapped, it could have been the older sister too. Even at my most frustrated with my brothers, I always knew that all 3 of us had the same 50% chance of getting MD.  I couldn't gloat over my normal IQ anymore than I could blame them for their truncated IQ. 

That everyone brings something to the table.  My brother David, even though his conversations rarely have a topic, is one of the most incredibly kind and giving persons ever.  Ever.  He goes to the arcades nearly every day to win tickets for prizes to give to my children.  Every time we're in Minnesota, he has a box of carnival prizes he won for them.  He loves his family more than anything.

Honestly, looking into his life, there is a long list of things that he could be upset about.  His life is missing so many things he truly craved, like a family and career.  But he doesn't seem upset or bitter about it.  

My brother Craig always had a realistic vision for himself. He wanted to move into a group home and his girlfriend (of over 10 years) is mentally handicapped as well.  But David always wanted to be "normal" - and yet, I don't see the resentment I would expect.  He really does have a great attitude about what life has brought him.

And Craig...oh my goodness, Craig.  So intuitive, so wise in his own way, and a truly amazing spirit.  I wouldn't wish away a single thing about his child-like wonderousness. 

Seeing that today, I am so grateful for my parents.  They came into Parenting Special Needs children with no background in it.  But truly, they did a great job in fostering good things about our wacky family, and raising me through that experience that no one else shared with me. 

And y'know?  If that first moment... when she walked through the lobby and saw her sister talking to me... what if she'd just gotten that sheepish look of some embarrassment, but then kept walking past?  I would have connected with that, on a human level.  Gone out of my way to reach out to her somehow.  At that age, you feel like your family is a reflection of who YOU are...and having the handicaps somehow seems like it's about you. I would have understood that feeling more than she can imagine.  

But this.  This was not okay.