Apr 16, 2013 24 Share

The Way You Look at Him


Women staring and whispering.
iStockphoto

I see how they look at him. 

My 20-year-old son Mickey sits cross-legged on the bench in the neurologist’s office. A teenage girl and her mother sit catty-corner. I see the girl’s eyes widen, and she smiles at him. She’s eyeing him as if she thinks he’s cute. Can she possibly be—flirting? 

Mickey doesn’t look at her. Instead, he opens an oversized workbook called “Social Skills Activities for Special Children.” It’s left over from sixth grade, but he still loves it. He reads aloud, laughing a little too loudly. The girl glances at her mother: the look they exchange is unmistakable. I can practically see a cartoon thought bubble forming above her head: 

What’s wrong with him? 

The girl’s flirtatious smile fades to pity.   

A nurse appears. Mickey covers his ears. He crouches like a school kid in a duck-and-cover drill. “Don’t say my name!” He’s afraid the nurse is about to call him; he’s been fretting about this for weeks. He’s not happy being here. He hates having to have yet another EEG. I’ve promised over and over they won’t call his name. As soon as we checked in I made sure to tell the receptionist. 

The girl whispers something to her mother. I wonder why she’s here. This isn’t an ordinary waiting room. She’s not here for a flu shot. This is the Epilepsy Center. There are children here wearing seizure helmets. 

Mickey laughs to himself again. The girl darts sidewise glances. Then from across the room, I hear a man’s irate and sibilant hiss. “Shush!” 

 Even here? 

I bristle. Yes, Mickey is too loud. Sometimes he has trouble modulating his volume. 

“Mick?” 

“Yeah, Mom?”

“Quiet voice, please.” I pat the air in that downward motion that signals him to speak more softly. 

Welcome to Autism Awareness Month. 

Yes, it’s April again, that cruelest month. The one where everyone talks a good game about Autism Awareness. 

But what I’m most acutely aware of today is how people look at him. Still. After all those blue light bulbs and puzzle piece car magnets and T-shirts and rubber bracelets. I’m painfully aware of the stares. And the trying-not-to stares. I don’t know if Mickey notices, but I do. The way they look at my son. It pierces my armor, slicing straight to the heart. 

Maybe they’re just staring because people do that. Anything out of the ordinary catches the eye; it’s a primitive itch. Twenty years ago, I might have looked too. 

I don’t want to care so much that they stare. 

But I do. 

I’m the one who always tells other parents to ignore the stares. Who cares what strangers think? I say. 

But I lie. It still makes me shrivel. 

On a good day I tell myself that those stares are actually ones of understanding and support. Other days, the looks feel accusatory: Why can’t you just control him? 

But what cuts the most is the welling up with tears, there-but-for-the-grace-of God-go-I Tragedy Look.  

Because here’s what those people aren’t seeing. Mickey’s sweetness.  His sideways hugs. His silly sense of humor. The joyful way he confides, “I have delicious news.” How fiercely I love him. 

So here we are again, back at April and Autism Awareness Month. In yet another doctor’s waiting room. If I were a bigger person maybe I’d view this as a teachable moment; start a conversation about autism. 

Instead, I wait quietly for Mickey’s name to be not-called. Silently, the nurse appears and gestures; we stand. “Come, honey,” I say. “It’s your turn,” and we traipse past the staring girl, and her mother, and the man who hissed at my son.

I’m tired of wearing ribbons. Awareness? We’ve been working at that for years. What about acceptance?

Because I see the way you still look at him.



Comment Options

Anonymous

So it doesn't get better?

So it doesn't get better? *Sigh* Coincidentally, I recently posted this: http://goo.gl/fb/3LCbL - She Talks Funny: My Child Is Not Your 'Teachable Moment' Awareness just isn't enough anymore. Glad I landed here today. I look forward to reading more of your posts! Http://www.whac-a-mole-life.com

Thanks for Sharing

Thanks for sharing that. I follow you on Twitter and Facebook, by the way. Thanks so much for reading and commenting.

Anonymous

I get it. Kind of. As much as

I get it. Kind of. As much as someone who doesn't walk this road can "get it." I have so many blogger friends with children on the spectrum that I have become more aware that things aren't always what they appear. That a child throwing a tantrum may be overwhelmed rather than ill behaved. I've become less judgmental. But I still look some times. Not to stare. Not to be rude. But because I want to understand and by empathetic and supportive. And I can't be if I pretend you aren't there. Besides if I notice you and I try not to look it just becomes ... awkward. So maybe some times it looks like I'm staring rudely, and I am so sorry. My intention is simply to acknowledge that you are different than me and I find those differences fascinating. And I wish I could find a way to let you know that I think you're beautiful just the way you are!

Anonymous

The look of love it ain't

This piece should be read by all parents of all children. I wanted to shake the mother of the girl who stared at Mickey. That mother missed a few classes in child-rearing. Shame on her. And shame on the lack of acceptance for differences. Is acceptance a timely issue? Long overdue, I'd say. This piece had just the needed amount of bite at the end to make its point.

Anonymous

I get stared at too

I won't say I understand because I can't and I hope my words help not hurt. I am 59. I use a wheelchair. My husband has to push my wheelchair because my left arm is paralyzed and I can't walk. I am not a hero or an inspiration.People are curious. They want to know what happened. Why my arm looks strange. Why your child does what he does. Children ask the most direct questions while their parents try to shush them. I prefer their directness. I don't like the sly, sideways, pretend glances.I try to educate people especially the children. I explain that I am grateful to be alive, to be a mom, a wife and an active community volunteer. We all have challenges. Mine are physical and medical.

Anonymous

I agree, everyone has

I agree, everyone has challenges. I often think of that saying, “Be kinder than necessary because everyone you meet is fighting some kind of battle.” Thank you for commenting.~Liane Kupferberg Carter 

Anonymous

Exactly what happens!

Hi there.  Love your column!!  You hit it right on the head!  I'm a Mom of a 22-year old with autism, and the stares have been there all our lives together - even when he was a baby and screaming in the shopping cart, and I was standing there trying to comfort him and could not.  The "can't you keep that kid quiet" stare would come at me from all angles!  I do want to say, though, that I try to give comfort to others when it is very obvious to me that they have a special needs child and it does take a bit of time sometimes for the parents to be aware of what I am doing and they let their guard down.  Let's face it, we all have our guards up when we are out in public with our children.  I know that I have the "let them just make one move on him" attitude the minute I get out of the car to go into a  store with my son as he holds my hand in the parking lot.  I, too, as other responders have written, have tried to express my understanding to other parents of special needs children when I have come upon them in public.  Sometimes it goes well, other times, not so well.  It is a tough road for sure.  You express and explain it very well.  I hope what you wrote will help people understand where we, as parents of our lovely children, are coming from and the walls we have built up to not only protect our kids but ourselves as well. 

Anonymous

Well, I Have a Different Spin On This

As the father of a 21-year-old with Aspergers, I used to think that my desire was to protect Jamie from the cruelties of the world (albeit not really cruelty but more often ignorance and curiosity), and I would approach outside social situations with a critical eye, playing judge and jury for those who didn't behave the way I "expected."(Of course, Jamie could care less, because his very condition makes him immune to the pain of mild social chastation!)So what really struck me later, and what really ASHAMED me, was that this didn't have anything to do with Jamie's feelings at all--it was about me being embarrassed by him. Once I lifted this boulder off my back, things have never been better, for the BOTH of us.More often than not, our desire to protect our disabled children includes a huge ingredient of ego--the parent's--and until we shed this selfish aspect of our personalities, the kid will never move on and learn on his own.

Anonymous

Beautifully writen, Liane.

Beautifully writen, Liane. And, as always, spot on. For us, every month is Autism Awareness Month. Keep writing, keep sharing. Amy

Anonymous

Wonderfully honest! Thanks

Wonderfully honest! Thanks Liane!

Anonymous

I understand but...

I was on an elevator with a woman and her strollered son. It was just a short ride but I KNEW what I was seeing (and hearing from his little toy) and tried to shoot her and the boy a smile that said "It's all good" I also knew she took it wrong because as I went out, she reached down and touched his hair the way I do my own son's. My heart broke as the doors shut because I had been the one to cause her pain... without meaning to... and I had no way to ease it.Sometimes our look or small smile is just an "I get it. And he's adorable no matter what you are battling."I have also been the one to get the other kind of looks so I know that pain. But I tell myself that strangers can't know our life enough to matter just as I don't know their battles. It helps me not want to throw a chicken pox wish on them.

Anonymous

I ran into a friend from high

I ran into a friend from high school in the supermarket. I had not seen her in several years. In her cart sat a little boy about 3 years old, obviously with Down's Syndrome. We chatted excitedly for a few minutes then I turned to her son and began talking to him. She said, "Most people try to pretend they don't see him." I have a problem with people who behave as though people who are challenged in some way are aliens. Please try to remember, they need your love and approval more than anyone.

Anonymous

Autism

You need to be strong..... and you are strong!!  That is something you know and strangers who stare don't. Remember everyone in that office is also there with a problem to be helped.

Anonymous

I have 1 son

MY son had autism and epilepsy as well he is only 6 years old.  I feel the stares and whispers but, my son is high functioning autism and has social issues to a point and he is 57 inches tall.  My husband is 6'7 and I am 5'11 so he is going to be tall.... They stare at him due to his height and think he is 10 and he is 6!!! Its a cruel society!I wish I could be with him EVERY second of EVERYDAY!!!! We are changing seizure meds and its been hard weining him off the one while starting the other.... emotionally he is exhausted...... :(

Anonymous

Unbelievably searing . This

Unbelievably searing . This one gave me goosebumps. Thank you, Liane, for speaking so poignantly, as always...

Anonymous

Wonderful Article

Thanks for a great article.  My son & I get a lot of stares each day and I never know why.   Are they staring because we are a Black family who've lived in the suburbs?  Is it because we also have a six year old a child with PDD-NOS!?It sometimes bothers me but I have lived with stares all of my life.I'm 40 now and I really do not care anymore. But, the one thing I've tried to do is make an effort to give a broad smile and genuine warm greeting to any parents with a child with disabilities.  They seemed surprised at first but I've always see their shoulder come down from around their ears and they return my smile.  

Anonymous

It is what it is

You hit the nail on the head when you wrote about the primitive itch, the need to identify/classify. Is that person of my family or my tribe?  There's something a little off about her - what is it? Is it a threat to me?  Until we have figured out what "the problem" is, and determined that the person or her actions are not dangerous to us, we're not going to relax or stop looking.  You can't educate out or remove that from all of human consciousness. If your sweet son was in a wheelchair, or had a white cane, the way he is different would be quick and easy to identify, and people would probably stare less. As a mother, I can understand your pain/love/frustration, and I wish I could say that *I* haven't given surreptitious glances to an adult or child who was behaving oddly, trying to figure out what the issue was, but I am sure I have. Though I have tried not to stare. And if the person is with a parent, have tried to meet his/her eyes and give an "we're all in this together" kind of smile.  Thank you for sharing this; so sorry for adding even a little to your pain or discomfort.  ~Beverly  

Anonymous

So powerful

Lee dearest--this was your most powerful yet. It makes my heart ache. Your writing is so raw and so honest. And I love reading the letters you get from other parents. Your writing serves such a valuable purpose in giving shape and form to the aching hearts of so many who don't have your gift.  I think what I try to do is the same as one of your responders--I try to catch the eye of the parent and offer empathy and support. Because your challenge is harder. But what you do so well is express that it is never sympathy that you want--because you have a wonderful, beautiful, loving child. That's what you really want acknowledged. if only there were a way to transmit that acknowledgment with a glance and a smile. i'm going to work on it. xoxo

Anonymous

Love to Liane

Thank you Liane for capturing what I feel and have felt as a parent of a special needs child. Love to you for putting down in words for us to savor and think about. Sometimes, I can't find the words but the emotions and thoughts are all there. Thank you. Thank you.

Anonymous

In This Together

You just keep writing pieces like this. So that we realize that we are not alone. That we bear the stares and the whispers and the comments supported by other strong parents who field the same reactions.Thank. You.

Anonymous

I agree with you, i never get

I agree with you, i never get used to the stares, even after all these years.

Anonymous

Well written.  I get it.

Well written.  I get it. Sometimes. though, I look as if to silently convey to the parent "i understand and you are not alone.  Thanks for sharing this article.

Anonymous

Ouch. The knife to the heart,

Ouch. The knife to the heart, indeed. We've started to experience this as my son (9, but small for his age) gets older and bigger. It definitely triggers the mama-bear protective instincts.

Anonymous

Good job

Oh, Liane... I loved this for the way it was written. I hate that you ever had to write it. We never get used to the stares, I don't think. I'm barely half-way into where you are and still very defensive. You seem to deal with these situations with a kind of grace that I cannot. Maybe one day.Jessi C