The Very Public Eye

I took Ben to grocery shop at the local super center last weekend, and, unfortunately, noticed the same thing I usually notice: the staring.  It wasn't very bad that day, as he didn't throw any tantrums, but it did happen.  And it did bother me.

Walking through the parking lot holding my hand and sitting in the grocery cart with a juice box, Ben usually looks just like a non-Autistic kid.  He doesn't stim (flap or rock repetitively).  He smiles and talks and tells me which groceries he likes and which he doesn't. 

Sometimes, when the bustle and noise of Wal-Mart are just too much for him, he shrieks and throws tantrums or puts his hands over his ears and cries, but that isn't what happened this time.  On this particular day, he hummed.  Mozart and "Peter and the Wolf".  Loudly.  Throughout the whole entire store.  And he pretended the bananas were musical instruments.

People did stare, both at Ben and at me.  I suppose, if you aren't familiar with Ben and have never encountered a pre-schooler who loudly hums classical music while pretending a banana is a flute, that you might take a second look.  I might take a second look.  Heck, there was a woman there with a large blue and pink weave that was pretty startling, and I certainly took a second look at that, but I didn't stare at her until she left the aisle.  And when I saw her again five minutes later, I didn't stare again the entire length of the aisle.  It's not polite, and while I am hardly Miss Manners all the time, I know how uncomfortable it is to be stared at and I try to be mindful.  What people wear or what their kids do really is their own business.

Thankfully, Ben doesn't seem to notice, but that doesn't make it all right to do it.  He is a child.  And while he may not be infatuated with Spider Man and doesn't sit in the cart clutching Buzz Lightyear, he likes what he likes and those things just happen to be musical instruments.  It might be a little odd for a four-year-old to be immersed in pretending to play a bassoon, but it's not a harmful interest.  And the humming of Mozart may have been a bit loud at times, but we weren't in a library and he did not scream or get upset one single time.  I would not think a thing about it except that people stare.

And, really,  I still don't.  We nurture that interest, just as we would if it were soccer or dirt bikes or Buzz Lightyear.

This is when that "Didn't your mother teach you not to stare?" T-shirt would really come in handy.

Not the End of the World

A friend of mine who has a child on the spectrum said, upon hearing that we had decided to suck it up and have Ben tested, "Remember, even if it isn't what you wanted to hear, it's not the end of the world." 

At that time, I was still hovering between denial and sort of realizing Autism might actually be a piece to Ben's puzzle.  But despite having begun to see some symptoms in him, I walked into that office determined to disagree with whatever the doctor said, no matter how smart and experienced she was.  I had read about Asperger's and just knew that wasn't it; maybe he was on the spectrum somewhere in that murky low end, but he did not have Asperger's.  I had prepared myself to hear "Autism Spectrum", and I had even begun to try to accept that, telling my mom, "I've decided it just doesn't matter.  The diagnosis won't change him and I will love him just as much as I do now."  But I was still determined that, whatever the doctor said, I was going to strongly disagree.  It was my issue with defiance that was speaking.  I'll just blame it on that.

I was sort of right, which means I was also sort of wrong.  I was wrong that it wasn't Asperger's, obviously, and I was wrong that I wouldn't be bowled over by that doctor's great big brain and all her experience.  Even though the words on the Internet did not fit my child, her deeper knowledge of Asperger's did.  It explained quirks that I knew were issues but attributed to other things, and it also explained quirks I didn't even know were concerns.

I was right that, in the big picture of our lives, it doesn't matter.  And I was right that, of course I love my child just as much as ever, with that all-powerful, end of the Earth-reaching Mommy Love that we do not know exists until we become parents.  It has also helped me understand him better, and I am learning more and more ways to help him.  And even though finding ways to help him will probably be a life-long journey, knowing about that little piece of Ben's puzzle has definitely added to our lives and has not taken anything away.  I still have my wonderful, smart, funny, sweet, mischievous Ben and I love him more than ever.

The Asperger's diagnosis was not the end of the world- not even close.  It has been the beginning of a better understanding of my child, less harsh judgement against myself as a mother, and that journey we are on to help Ben be happy and successful.

Two Words

Asperger's Syndrome.  In short, it is an Autism spectrum disorder, thought to be high-functioning because of its preservation of linguistic and cognitive development. 

If  you look it up, you will not see my son, Benjamin, in most of the descriptions or symptoms.  He does not flap.  He does not stare off into space endlessly.  He is not obsessed with pieces of toys.  He hugs, kisses, laughs, loves to be snuggled, loves to play interactive games, and loves to learn new things.  He does sometimes avoid eye contact.  He does mildly obsess over fans and musical instruments.  He has trouble with social skills and initiating play with other kids.  He does freak out in new situations and crowds.  He has a heck of a time with transitions and unexpected changes.  He can throw an impressive tantrum.  He also did not talk until he was 3&1/2, which led to some confusion when he was diagnosed, but he has struggled with some physical issues from our complicated pregnancy and his premature birth that probably delayed his speech. 

Those issues didn't cause it, I didn't cause it, and for everything I've read that claims to know what causes it, I find at least a dozen more published statements to contradict it.  It is mysterious, almost impossible to fully grasp, especially because every child who is diagnosed as somewhere in the spectrum is different in many ways from every other one.

I will tell you, hearing a doctor utter those words hits you like I imagine a Mack truck full of bricks would.  And you have to immediately decide how you are going to handle that diagnosis, as suddenly every single day becomes important in helping your child.  Are you going to try to find another specialist who might say something else?  Pull a Jenny McCarthy and look for a cure while declaring yourself a "warrior mom"?  Writhe around in denial and try to ignore it?  Buy buttons and T-shirts that say, "My child has Autism.  What's your excuse?"  Try to hide it?  Scream it from the roof tops and dare anyone to have a problem with it?

My response was, and still is, to hit the ground running to find and gather resources to help my son cope.  I have learned a great deal in the last few months but often still feel as if I know nothing.  Some days I am okay, and some days I struggle.  Every single day I am struck by the power of my love for my son, and I am constantly learning lessons and finding shifts in my attitude toward just about everything, including my students and the people in my life.  I have not, unfortunately, developed more patience, and I am constantly aware that all of the resources Ben needs are not in place yet.

I have shared his diagnosis with some people, but I am beginning to feel very strongly that it is not and should not be a secret.  There isn't anything "wrong" with him, or my parenting.  He is different, but not inferior.  He is unique and he is amazing, and he is the best gift I have ever received.

I briefly considered having a T-shirt made that says, "Didn't your mother teach you not to stare?" for those times when he freaks in public and that is all everyone seems to do, but that isn't really my way.  Having an outlet is, and that is my hope for this blog: to have a place to go to let it all out, whether the "it" be joys, frustrations, celebrations, set-backs, or anger at people too narrow to understand that all children are different, special, and valuable.

And most importantly, I hope this will be a place to celebrate Benjamin.