Month: November 2013

Also posted here: http://motheringkidswithspecialneeds.wordpress.com/2013/11/26/feed-the-beast/

By Jamie Pacton

For me—a curvy, half-Sicilian woman from the south who married a Polish guy from Chicago—Thanksgiving is all about food.

Turkey, gravy, stuffing, ham, sweet potatoes (with little marshmallows on top!), green bean casserole, cranberry sauce, pies, cakes, wine, cheese, are the focal points for my family’s Thanksgivings. We eat together, it’s what we do. But we’re not alone in this impulse.

Food has always been the heart of Thanksgiving.

Since the Pilgrims sat down with Native Americans centuries ago, Thanksgiving has been about the power of food to sustain life, give hope, and create community.

And reflecting on food’s powerful place in the Thanksgiving season reminds me of a Cherokee legend that offers a different type of sustenance this Thanksgiving.

You might know it already, but here it is again.

*

One evening, a Cherokee boy and his grandfather sat on the edge of the woods, watching the sunset. The grandfather looked into the distance, and the boy saw that something was on his mind.

“What’s the matter, grandfather?” the boy asked.

“A terrible fight is going on inside me,” replied the grandfather. “I have two wolves fighting in my heart. One wolf is evil—he is my anger, envy, sorrow, regret, greed, arrogance, self-pity, resentment, inferiority, lies, false pride, superiority, and ego.”

The boy looked alarmed. “What is the other wolf?”

“The other wolf is good—he is my joy, peace, love, hope, serenity, humility, kindness, benevolence, empathy, generosity, truth, compassion and faith. But I’m not the only one with these wolves. The same fight is going on inside your heart and in every other person’s too.”

The boy thought about this for a moment and then he asked his grandfather, “Which wolf will win the fight in our hearts?”

“The one you feed,” answered the grandfather.

*

So, the Thanksgiving food for thought I want to leave you with is simple (and perhaps a bit of a mixed metaphor, but so be it):

We are what we eat.

We can control so little as parents (especially when parenting a child with special needs), but we can choose which wolf we feed.

We can nourish our joy, peace, love, hope, serenity, humility, kindness, benevolence, empathy, generosity, truth, compassion, and faith if we constantly invite them to the table.

So, my friends, this Thanksgiving season, gather, eat, be merry, and give thanks with your loved ones.

But be sure to bring your best beast to the feast with you because it will feed you long after the turkey, stuffing, cranberry sauce, pies, and Thanksgiving goodies are gone.

Bon Appétit!

 

 

 

***

 

About the Author

Jamie Pacton lives, teaches, and writes near the shores of Lake Michigan in Milwaukee. She’s a Columnist and Contributing Editor at the Autism and Aspergers Digest and her work has appeared in The Writer, Cricket, Parents, and many other publications. When she’s not grading papers or at her computer working on her YA novel, she’s usually at the zoo, park, pool, or art museum with her two young sons (one of whom has autism, and both of whom are magnificent). You can learn more about Jamie at her blog,www.jamiepacton.com.

Splinter Skills

One of my contributions to the book collection: Monday Coffee and Other Stories of Mothering Children with Special Needs

When I think about my hopes for my son’s future, I don’t think college, kids, or Fortune 500 companies. Marriage, vacations, 401K’s— these don’t enter my head.  I don’t see him backpacking across Europe, sneaking out of the house, or visiting me in a nursing home.

For now, I just think about t-shirts. Rows and rows and rows of colorful, neatly folded t-shirts.

This is because a friend recently told me about an autistic adult she knows who loves folding laundry.  When he was a kid, he relished folding all the laundry at home, so his wise mother promptly made that his job.  Now, at 22, he’s successfully translated this passion to real employment.  He takes the bus every day to a store in suburban Milwaukee where he folds and straightens endless piles of t-shirts for eight hours every day.

Is it fair, however, to call this a passion? Can one really be all that jazzed about folding laundry?

If you say no, then you’ve never parented an autistic child in the throes of an obsession.  Kids on the spectrum stumble into the oddest, most eccentric corners of life.  The lucky ones can easily translate their interests (the clinical term here is “splinter skills”) into real-world employment.  For those kids who find themselves needing to memorize the names of all the stars in the sky, or tinker endlessly with electronics, or forge steel in their garage with basic chemistry sets, there are jobs waiting for them as eccentric, brilliant, singularly-focused astronomers, engineers, and chemists. Others love less academic things that can still be translated to gainful employment— rare books, subway schedules, antique refrigerators, cattle shoots, and hundreds of other pursuits.

But, what about the other “other” kids—the ones like my sweet, severely autistic 5-year-old, Liam?  Unlike many of his autistic peers he’s not exhibited any clear splinter skills beyond a love of peanut butter and jelly and a surprising deftness with climbing the cabinets to steal hidden pieces of gluten-free gum.  What if he never develops any of the “genius” aspects of autism and just ends up finding fulfillment in a simple, repetitive task like folding t-shirts? If that’s enough for him, will that be enough for me?

I have to look this question straight on and really let it punch me a few times before I can think clearly here.

I mean, what about all those plans I had for play dates, the vacations we’d take together, and all the things he’d do that I didn’t get around to doing? What about all those little ways that he was going to be because I wanted him to be that way?

Here’s autism parenting lesson #1: things are not as you expected. Deal with it. Love the child you have, not the one you thought you earned/deserved/expected.

I know that sounds brutal— and it is at first— but there’s a whole lot of good within this lesson.  As a parent to a child with autism, I haven’t given up on my son. I haven’t lowered my expectations tout court.  Rather, I’ve done what every parent gets around to doing eventually—usually after a decimating series of teenage years and the eventual reconciliation that follows everyone growing up a bit, children moving out and moving on, and the cycle of parenting beginning again— I’ve looked at my son for exactly who he is and removed all my expectations for who he should be from the equation.

 

Does this make me a better parent?

Of course not.

Do I feel smugly superior?

Oh no, and I often wish that I could still project my hopes, dreams, and expectations onto Liam.

But, the simple fact of the matter is that all of them slide off him like a runny egg on a mound of hash browns.  He is fully his own being, and his autism ensures that he will not be the straight-A, soccer-playing, punk-rock-loving, free-thinking, surfer dude that I imagined I’d raise.

So, what kind of mom looks at her kid and thinks: “man, I hope you land a sweet gig folding t-shirts when you’re in your early 20’s”?

An autism mom, that’s who.

The autistic man my friend told me about is happy. He has meaningful work and he is respected for what he does. Any parent of a child with special needs could only dare to dream of so much.

Facing the future is a tough job. Looking ahead to the time when “everything that will be, already is,” as Temple Grandin’s mother puts it, terrifies me.  But, if Liam can find something that he loves—whether it evolves into a splinter skill or not— then I think I can live with that.

After all, this is his life and his future we’re talking about here, not mine.