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Saturday, September 11, 2010

Defining the Fringe

Today is September 11, 2010.   9 years ago today, I was driving in an open air jeep with my dad and husband on the isolated and dramatically beautiful West coast of the island of Crete. I recall vividly the hairpin turns and the feel of the strong warm wind in my hair.  It seemed that we had reached paradise and there were no thoughts in my mind, just pure mindless bliss.   Well, everyone knows what happened that day. We didn't know at the time though. We were insulated for another 24 hours from the horror of knowing and even after that, for many days, we were saved from the palpable fear and anxiety that so many felt on my home turf.  But actually I am not writing about this day to commemorate 9/11, rather my mind keeps drifting back to that day 9 years ago, and the fact that at that time I had no children, no job and really not a care in the world. I relished that feeling. Free. Free at last. And I miss that freedom most days.  This is the kind of thing you hear from parents of young children all the time. "Ah yes, that was during my life BEFORE kids" or "that was in another life - BEFORE kids" or "God I miss my life before kids". But I think "ahh, I miss my life before the stresses of autism came along".  And like most parents, I never really want to go back to that prior life, but it's nice to dream.

My third life, the one on the fringe, began when I first received the phone call from a certain Dr. Black one evening.  I had taken Finbar in to see him for a cold. He had noticed some things were amiss and called to tell me so (God bless him for being so brave).  He suggested I have Finbar evaluated, stating, "I don't think it's autism, but there are some signs".  No need to freak out I told myself.  In fact, I had known that is was likely autism, in my gut for a while, but never uttered the "A" word to myself or my husband.  I had been researching once or twice in the previous months that "A" word, basing my suspicions purely on instinct and the fact that I knew in my gut that something was wrong with my child.  Finney had had all the now frequently reported signs of regressive autism.

So now, from that day on, I had three lives - the one before kids, the one during which I was blissfully ignorant that my child would forever struggle and be different in this world, and the one I live now - I call it "Life on the Fringe".

This blog is for all of those parents and relatives who do not live within the "norm" of what is so (strangely at times) popular and common for families of today.  It is for the parents who, like myself today, and unlike most of our friends, have not attended the first Saturday AYSO soccer game of the season with their 5 yr old son. Because as he so rationally explains to me "in soccer they don't kick the ball back to you".

It is for parents like myself, who chose not to attend a good friend's birthday party today because the moody unpredictable nature of a child with high functioning autism added with the fact that he had a tummy ache yesterday could make for a thousand apologies and days, even weeks of regrets for taking that risk on him.

What do you do? Wear a t shirt that says "BEWARE: I know my child APPEARS to be normal like all the others here, and I SEEM like a great mom, but his barely detectable autism can FREAK HIM OUT and make for an embarrassing scene at any moment".  That t-shirt slogan is the modus operandi of a family living with a child who has autism.  Particularly high functioning autism like mine.  You see the problem with high functioning autism, the curse of being "lucky in our unluck" as my husband likes to say, is that by 90% of appearances, my child appears to have the same normality, development and functioning of his peers.  However, that other 10% is unpredictable, ugly and NOT NORMAL.  That 10% is what I call "the fringe". We live with it, on it and in fear of it.

Because we live on the fringe, we live a sort of double life - a life of "inclusion" to borrow the special ed term. And a life of exclusion.  Living two lives can make parents like me feel schizophrenic and paranoid.  After several years of leading this double life, at the suggestion of my sister in law, I decided to start this blog both to help myself work through these feelings of schizophrenia, but also to let other parents know that if they feel they are living on the fringe, be it with an autistic child, or just a child who doesn't' fit into our cookie cutter society, they are not alone.  And I hope that those parents who do not have to deal with these issues can appreciate the unique qualities of their own "normal" children and understand why a parent such as I might appear overly stressed, anti-social or even to have multiple personalities at times.

We all need to appreciate the children God has given us, cookie cutter type or not. They have much to teach us. If we stop expecting every 5 yr old kid to play soccer for a moment, and open our minds just a bit, we may learn more than we ever dreamed of from these kids. That has been my lesson thusfar.


karenboemler said...

Hi Jen, it's Karen , let me be the first to say, I totally "get" you!! It's so hard when people look at your kid and think on the surface 'they are fine, what is your problem? "
they just are acting out.......anyway, great idea, and just like the first time I met you, it's so nice to realize someone else out there just gets it.

Bug said...

I've been at both ends back and forth and I totally understand you and feel for you and for all other moms dealing with any kind of special need kids. It gets though sometimes...

Bug said...

Well, if you are wondering who "Bug" is, that is me, Melike :) That's my nickname given by Bernard :) See u soon!