Aug 21, 2012 21 Share

On His Own Terms


Illustration of men at outdoor party in silhouette.
iStockphoto

As usual, I’m awash with anxiety.

We’re going to a graduation party for our neighbor’s son. What I’m feeling isn’t about having to tamp down the residual sadness I feel that my 20-year-old autistic son, Mickey, isn’t going to college too. Well, okay, maybe it is just a little. Mostly I’m worried because tonight there will be 50 or so people there, many of them teenagers who’ve never met our son.

Mickey, however, is eager to go. So keyed up he doesn’t even balk when we tell him he can’t wear a tee shirt, pulling on a pale blue polo shirt without protest. “Can I bring my Muppet album?” he asks.

“No hon, not appropriate.”

“Okay,” he says agreeably. “Next time.”

Without even waiting for us, he strides confidently across the street. He greets people happily, working the crowd. I shadow him; even as I stop to chat, I keep my eyes on him. He walks out to the deck; I’m right on his heels. He walks back into the kitchen; I stand close behind.

“Can I have some water?” he asks the caterer.

Please,” I prompt him.

“Don’t follow me Mom,” he says, irritated. I’m startled. But really, who can blame him?

I get it. He hates my hovering. But I’m not only monitoring his behavior.

He’s excited to be here. Maybe too excited. That can trigger a seizure. I remember a dinner in this same house two years ago. Mickey beside me at the table. How his head pivoted toward me as his eyes rolled back. The room went eerily still as I cradled him. “I’ve got you, you’re safe,” I’d whispered to him over and over until the seizure subsided.

But do I really need to be this vigilant? No 20-year-old wants his mother policing him. I take a deep breath.

“Okay, Mick,” I say. “I won’t follow you.”

Mickey plunks down at a table filled with teenage boys I don’t recognize; one of them slides over to make room. Mickey has always wanted to connect. I think back to the time a behavioral therapist observed him in the elementary school cafeteria. Her report had been gut-wrenching. Each time Mickey sat down at a lunch table, all the other kids got up and moved. Mickey doesn’t have much small talk in him; he still struggles to sustain a complex conversation. But I watch as he listens intently and hangs in there. No one stares; no one points; no one moves away. Later I see him in the backyard with the other boys, somewhat awkwardly whirling a Frisbee back and forth. I feel a rush of gratitude. The other kids have absorbed him into their group without question.  

I’m not kidding myself; I know there are many times he still stands out. Does this bother me just for his sake? Isn’t it also about my own abiding discomfort when it feels as if people are judging him—and by him, I mean us—so critically?

I long for him to fit in. But I also want him to be exactly who he is: his playful, endearing, unfiltered self. How do I reconcile the two? Is it even up to me any longer? 

Our neighbor’s daughter Ali joins me. “I had a great conversation with Mick,” she tells me. Ali is studying to be a special education teacher. 

“Was he talking about the Muppets?”

 “Not at all,” she assures me. “He told me he’s been working out at Planet Fitness and asked if I wanted to go with him.”

I love that he’s mustering up appropriate conversation. Yes, he can only sustain it for brief periods. But how far he has come, since that day 18 years ago when his first speech therapist told me he might never speak at all.

My husband Marc joins me on the deck. Together we watch three handsome young men tossing a football in the twilight. Our son is one of them. He is holding his own.

“Look at him,” Marc says softly. “You know what’s remarkable? How unremarkable this looks."



Comment Options

Anonymous

You describe my son too

How wonderful to find kindred spirits .My 25 year old son Jake is a gregarious man with autism too and I have to hover also! it's harded when they desperately want to connect and the 'pathos' moments are relentless.

Anonymous

Every once in a while

we get to be accepted. I've found that my new hobby keeps people from noticing I have Aspergers----obsessing over a card game has earned me quite a few new friends. I like to expose myself to "normal" people who behave like me; that is, people like video game addicts and comic collectors. They understand the "obsessive" nature of Aspergers and don't mind it.But Mickey's experience is amazing; it reminded me of the first time I went into the card shop. Normally my awkwardness makes me leave almost immediately. It's always good when people accept others who are different, and autism is no exception----rather, it's the x-factor where people can't defend themselves, unlike a lot of other conditions where the affected one shrugs it off or fires back angrily. With autism, we...literally don't know what to do.

Anonymous

Proud

Mickey is growing up to be such a wonderful charming young man.  I am so proud of him!!!  Liane your writing is so beautiful, I felt as if I was standing next to you and Marc. 

Anonymous

Liane this article only makes

Liane this article only makes me think good things in the future for my sweet boy only ten now

Anonymous

Confirmation

Thank you for sharing this, Liane. It's serving as confirmation of myself and what I tell other parents all the time. We have a different arc of maturity than "Neurotypical" children. We'll get there someday. Patience is necessary, but we'll get there. This is just one moment of many to come. I have classical autism and yes, people got tired of hearing from me about my favorite topics and it wasn't until my late teens, early 20s that I began to recognize that as an issue. I still had wonderful friends and family members to get me through those awkward and sometimes quite painful moments in childhood. When I look at my youngest son, who is diagnosed with PDD/NOS (because he was "too social" for a classical autism diagnosis), I remind myself of this. With love, patience, and time, he'll mature too.Here's to wishing you many more unremarkable moments :)  

Anonymous

Moment of "Normal"

That instant of "normal" makes everything else worth it! Sometimes, with a special kid around, life seems so impossibly far from average, and then a light shines on a moment or an action, and the world tilts back into place. Thanks for the reminder!  Janeen

Anonymous

Children do grow up

What I found most endearing about this essay is how Mickey's peers did grow up.  They were no longer insecure and worrying about their own acceptance that they able to just relax and unconditionally accept Mickey.  Well done!!!!

Children Do Grow Up

That's an interesting point. That group of kids that now welcomes Mickey without question could easily have contained some of the same children who changed lunch tables to get away from him ten years earlier.  Thank you for commenting.

Anonymous

Thanks for sharing this so

Thanks for sharing this so eloquently. I have observed Mickey developing into a young man, increasingly more competent. I know how hard it is to balance our "need" to hover & protect against our knowledge that our children want more independence.

Anonymous

Isn't it amazing what a

Isn't it amazing what a difference one child showing empathy and acceptance can make in a autistics childs life? 

Anonymous

love it!

i love catching those utterly immensely remarkle moments that are so unremarkable. It's such a peaceful moment to relish.

Anonymous

Love.

Amazing how moving the simplist things can be.Thanks for sharing. 

Anonymous

I have tears in my eyes - a

I have tears in my eyes - a REMARKABLE piece. Lisa

Anonymous

I've been following this

I've been following this column since the first one, and I'm always impressed by the insights and honesty shared by Liane.

Anonymous

Thank you

So moving and, as always, beautifully written in a way that makes us feel so close to you and your feelings.

Anonymous

This is beautiful.

This is beautiful. Just...beautiful. It made me weepy at first as I recognized familiar struggles; then, it made me smile and feel a flicker of tremendour hope for my own son's future. So many things can change, so much growth possible between where he is now (nearly nine) and where your son is. This essay is a good reminder for me that the road is not ever clear or straight and no one has a crystal ball. Thanks. - Niksmom (http://maternalinstincts.wordpress.com)

Anonymous

wow

Made me cry. My friend Liane --and the rest of her family--have come such a warm, long, wonderful way.

Anonymous

On His Own Terms

I am old school, so, I remember well what it was liked to live, play, work and socialize in a mixed ability environment.  I also witnessed the isolation, instutionalization, and avoidance of people with "disabilities".  I am glad today, however, that there is more teaching, learning and focus on those of us who may not be mainstream in every way. As your son and his friends demonstrated, it's easier to include the differences rather than fear the effects of them!

Anonymous

One of the best things about

One of the best things about becoming an adult is that nobody cares about your IEP goals anymore, nobody talks about your deficits and how to make you better. Instead, people care about what you can do and you are closer to being accepted as a human being in more situations.

Anonymous

Autism After Sixteen

This family warms my heart.

Anonymous

Wonderful to read

Thanks for sharing this, Liane. Your perspective as a parent who has been on the journey you've been on is invaluable. Your son sounds wonderful and he is so very lucky to have you as a mom. Please continue to share your experiences with us.