Sunday, January 1, 2012

"Dear Shopper Staring at My Child..."

A friend and fellow mother of an autistic child in Max's class, shared this on facebook the other day. Each time I read it, I cry. I don't really know why, but I think it seems like people don't understand this isn't something we caused. We didn't do anything wrong that opened the door for autism. Max isn't a brat that gets to do whatever he wants (although he has developed quite the three year old attitude lately...). We let him "get away" with certain things because he simply doesn't understand why they would be any other way. His mind doesn't work the same as ours, and he views the world much differently than we do. Its almost impossible to try and explain this to people who don't know. I deal with this every single day, and am still just finally starting to understand what the world looks like for him. And my level of understanding, is no where near where it should be to really understand why he reacts the way he does. This lady does an excellent job of expressing and explaining some of these thoughts...

"Dear Shopper Staring at My Child Having a Meltdown in the Grocery Store"
From Flappiness is...

Dear Shopper, Yes, I know.  I’m well aware that my child is screaming.  Not just a regular scream, but an ear-piercing, sanity-shattering screech.  Even if I wasn’t seeing and hearing it, I would know by the expression on your face.

Clearly, you have raised your children better than me.

That is what you were wanting to say, right?   There certainly can’t be any other purpose to you stopping in your tracks to stare or elbow your companion  or better yet — give knowing looks to other shoppers passing by.

I have no doubt that you have wonderful, well-behaved children.  Grown, tax-paying, law-abiding citizens who would never have dreamed of screaming like this in public when they were children.  Judging by your expression and utter exasperation, you’ve never hesitated to let them know who was boss.

And I know that you did your best with your children, that you loved them, and want all children to have a solid upbringing in which to start their lives.  You are, in all probability, a good person.  You probably don’t mean any harm.

This is what complicates what I want to say to you.  Because, despite my anger towards you, I happen to have been raised well too.  I don’t want to be ugly, even though right now I feel like it.
Because I know some of that anger is misdirected.  It is misdirected because I, too, have stood in judgment of someone like me.  I, along with almost everyone, have stood in public and watched a scene like this one play out and thought to myself, “Clearly she has no control over her children.  When I have children, mine will never behave like that.”   I, like most people, wasn’t quite as obvious about it as you.  I didn’t stare or make comments that could be heard.  But I was every bit as decided.

So, some of my anger is really directed toward Human Nature, who refuses to be put in its place.
The nice thing about human nature, however, is that it can be overridden.  And all it takes is but a single experience, a single human interaction, to the contrary of your own strongly held convictions.  Then presto whammo — you are a new and hopefully improved person.

Let me introduce you to my child.  Like you, I marveled at the miracle of life upon becoming his mother.  Like you, I rocked, burped, and inhaled his sweet baby scent and thanked God over and over for the gift of him.   Like you, I had certain dreams for my child.  There your path and my path diverged somewhat.

My precious child is autistic.  Yes, I’ve seen Rain Man, and, no, my son is not likely going to be a great card counter.  The truth about autism is that it encompasses a wide spectrum of abilities.  And, like you and me, every autistic child who has it is different from the next.  Yet they do often share some similar traits – sensory overload and meltdowns are one of them.

Every person on the planet has what I think of as an internal alarm system.  Most of us have ours in good working order.  But some people with autism have what I like to call a hair-trigger alarm system.  Theirs can go off with what seems to average folks like little to no provocation.  There IS always provocation.  Non-autistic people simply aren’t as sensitive to seeing and hearing the triggers, and that’s when the alarm goes off.  And when it does, it’s loud.   Everyone in the vicinity wants nothing more than to have it turned off, including the people who love them.  When you see me “placating” my child and “giving in” to his tantrum, I’m really just desperately looking around for the alarm key or trying to remember the right code to turn off that blaring alarm.  It isn’t his fault.  And, no matter how upsetting it is for you, let me assure you it is that much more upsetting for him.

I’m sorry that you haven’t had quite as pleasant of a shopping trip as you had anticipated.  It hasn’t been so pleasant for me either.  Problem is — I have to feed my family, deposit my paycheck, pick up prescriptions, etc. just like you do.  And, unfortunately, no one arrived at my house today to watch my child so that his autistic behavior wouldn’t upset anyone in public.  I have to leave the house and so does my child.  Because I have to teach him about the world.  I have to let him practice controlling his alarm system.   So that he, too, can possibly be a productive citizen making come true all those dreams I had for him when he was so small.

With so many advances in early detection and therapy, many of us will be able to see most of those dreams come true for our unique children.  And for some of us, our dreams will have to change for our children.  We may need to re-define happiness and success.  For life is like that.  We constantly have to reevaluate our expectations of ourselves, others –and, sometimes, even the grocery store.

I’m hoping that your single human interaction with me has given you an opportunity to be a better person.  For, with 1 in 91 children being diagnosed with autism now, you are going to have a lot more opportunities to make a positive impact in the life of someone like me.  All it would take would be a smile, a pat on the back, or a “Bless your heart, honey, hang in there” to refill a stressed out parent’s reserve of patience and calm.  You could be the bright spot in our day.  And, then, if you want, you are welcome to ask all the questions you want.  Your curiosity doesn’t offend me in the least.  Most of us aren’t the least bit upset to talk about our kids – any more than you are.  If anything, it is an opportunity to educate and dispel myths.

And, maybe, just maybe, you will be standing there when the alarm gets turned off.  Maybe you will get to see what every mother wants the world to see – the wonderful personality of her child, in our case hidden behind a mask of fear, anger and frustration.

Who knows?  Maybe I’ll get to see the one hidden behind yours."


B. Wilson said...

I've worked with many autistic children and still appreciate to read these excerpts. None of us wants our children to struggle with life situations. We want them all to thrive and turn into wholesome individuals.

Teaching has given me the chance to meet so many individuals (both children and their parents) and to really appreciate the differences we have. You're one of them. You're a great mother, Tiffany. I hope people are encouraged by the love you clearly show for your babies-- even if that love is being shown in the midst of a meltdown.

crystal said...

I love how she put this into words. I think everyone should read this before they try to judge a child or parent. I too, have worked with Autistic children and my moms does every single day of her life. Just because they have Autism, it doesn't make them any different. They are still a child and if people get to know them, they can see how huge their hearts are. I am sure that you get so much loving out of Max. I love to see your love for Max and Ellie. You are wonderful and as I have told you many times, you are truly an INSPIRATION to me!!!

ccc said...

I love how she used the analogy of looking for the key/right code to turn off the blaring alarm. Perfect analogy.
Take care, Tiffany.

Beth said...

Hugs to you. I just wanted to tell you that I also work with kids with special needs (I'm a speech pathologist). Just the other day at the zoo, we saw a kid with one of those teddy bear backpacks with a leash on it, and my brother was all judgmental about it. "Did you see that kid? He is like 8 or something." I told him that he could be autistic or have some other special need not easily observable and he totally paused at that. I try to plant that seed when I can. I remember my first year working in the schools I worked with two beautiful boys with autism and their mother got so many dirty looks. They didn't "look different" and they were verbal and everyone assumed they were just naughty or rude when they kept pushing into people's personal space in line, etc. Another frustration that moms of kids with special needs don't need added to their plate. Snobby shoppers, get a clue and keep your thoughts and facial expressions to yourself.

Oh, and one more thought. My husband's stepmom who is a total diva told me once that her son was melting down in a store having a tantrum. People were giving her dirty looks, and she glared right back at them and said in a loud voice, "What?! You've never seen a tantrum before?! Get back to your shopping and mind your own business!" hahahaha. I wish I could have been there to see it.

Ashley said...

Wow, that was so powerful! No words but I will definitely be looking at things differently because I don't know everyone's situation. Thanks for sharing.

Ashley said...

Ashley couldn't have said it better. I too will definitely look at situations differently now.

Thanks for sharing!

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