Sunday, October 19, 2014

Big Bad Down Syndrome

I have never heard another parent talk about this so I feel like I'm going out on a limb here.  Also this one was hard to find the words but it's something I have been thinking about a lot, so here goes.  

In the not too distant past, when I looked at my beautiful daughter Claire nearly all I could see were the things that were going wrong, the things I was blaming on Down Syndrome.  Perhaps because I needed something to blame or because we have just been through a lot of traumatic events this year, regardless Down Syndrome changed in my mind into the bad guy.  Like a transformer or, what are the bad ones, a deceptacon, Down Syndrome because a villain instead of a diagnosis, something to battle daily.  I was missing Claire, who she was, because when I looked at her I saw big bad Down Syndrome.   

In the middle of last school year Claire's behavior changed dramatically.  She was unpleasant to be around to say the least: hitting, kicking, shouting, grunting, grumping...  Nate and I were baffled.  We looked into behavior therapy and counceling.  We had to give away our older dog because Claire would come home from school and just start kicking him out of nowhere and of course he bit her.  People literally told me "I just don't like being around Claire anymore."  We didn't know why she was acting out.  I attached all of unpleasantness to Down Syndrome.  Some kids with DS struggle with this same aggression we were seeing in her.  We thought, maybe this is just what we are in for now that she is growing up.   

Long story short, we decided to homeschool Claire for the rest of the year.  She was stressed at school and after she had been home for just a few weeks all the "big bad Down Syndrome" behavior began to melt away and I could see my little girl again.  Nate and I were so relieved that angry Claire was not here to stay.  

I have been left with questions about the way I reacted to the situation though.   Obviously this was not Down Syndrome at all.  Around the same time a friend asked me "what do you think Claire would be like if she didn't have Down Syndrome?"  The question struck me, nocked the wind our of me.  What would she be like, I couldn't say because I was so focussed on all the things that were going wrong and blaming them on Down Syndrome.  

When Claire was acting out it was not Down Syndrome, it was just Claire.  Her behavior was her way of telling me: I'm not okay, I am stressed out...  I was so quick to see "Down Syndrome", blame the bad guy, that I was blind to what was really going on with Claire. 

Things have really calmed down around here and Claire is doing very well, she is so resilient.  I am still processing everything that happened this year.  What can I learn from even the hard things?  I don't have an answer for a lot of it.  One thing I would like to grab onto and never forget is to see Claire for who she is.  I don't want to blame Down Syndrome or give it way too much credit.  I want to give Claire the benefit of the doubt that she is communicating in the only way she can right now.  I don't want to miss her even on the hard days.  I see Claire more clearly now, a new layer of who she is and that is something to be thankful for.

This is so much more then Claire and "Down Syndrome" though.   I don't want to label, to blame, I want to restore.  When I slap a name on something, put it into a box and move on I miss the person. Every bio parent we work with through foster care is a person with a story.  Every neighbor has the same felt needs I do.  God give me the eyes to see the person through their circumstances and have compassion. 

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