Jamie Pacton

Feed the Beast (That Feeds You Best this Holiday Season)

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.

It wasn’t so much what Eliot’s pediatrician said, as how he said it. And the look of worry, pain, and concern that crossed his face before he began. And the way he silently touched Adam’s shoulder as he left the room.

He didn’t look at us.

I don’t think he could.

This is the pediatrician who’s seen Liam through many, many ear infections, well-child visits, and struggled find some way to help us understand Liam’s autism. I could almost hear him thinking as he drew out the arches and valleys of systolic and diastolic heart rhythms on his small notepad: How do I tell these parents that something might be wrong with their perfect second child? How can I burden them when they have so much already?

This is the same doctor who told me two days ago, during an ear infection check for Liam: “You are exactly the parents that Liam needed to have…”

(When I told Adam that later, he replied: “That’s like telling gladiators they’re doing a good job….)

This pediatrician is kind, jovial, and knows his medicine; but, he can never give me answers about Liam. He usually just offers a sympathetic gaze.

And so, as he drew, Adam and I waited, sitting right next to each other, knees touching like they did in that psychologist’s office when we got Liam’s autism diagnosis two years ago (http://hyperlexiajournal.com/fascination-with-letters/jamie-pacton/)

Both of us knew something was off (although Eliot had no idea as he played happily on the floor nearby), and I swear our hearts raced along the same speedway. Our systolic peaks and diastolic valleys were Himalayan as we waited.

You see it had already been an emotional morning. A few hours before, I’d signed a form detailing Liam’s transfer to the K-4 class at his school. It began with a sentence that always breaks my heart: “Liam has severe ASD…”

And so my heart was heavy already and a thousand, thousand grim possibilities raced through my head as I waited for news of Eliot. I remembered my plea to the universe in my blog post, “Second Son”: http://www.jamiepacton.com/?p=158

The news about Eliot wasn’t all that bad, but it still punched me in my unsuspecting gut, hurting my heart in the way that only medical news about a child you adore can. A happy, talkative, child who seems well in every way.

“So, when I listen to Eliot’s heart,” said the doctor slowly, “I hear a small murmur. It’s just a lub-dub-slosh sound and it is probably nothing to worry about. But, since I know Jamie’s brother had holes in his heart and open heart surgery in his twenties, I think we should get it checked out. Just to be sure everything is fine with Eliot’s heart.”

Ok. Ok. Ok. We can handle a little cardiac consult. No problem.

What Adam and I couldn’t handle was the chasm that opened up at our feet just then because all-at-once it made Eliot’s continued existence and presence in our lives vaguely tenuous. With so much being unsteady and challenging about Liam, Eliot is a constant source of joy, peace, and laughter in our home. Life without him is literally unthinkable.

“Push it down,” Adam said to me as we drove away from the pediatrician’s office. Tears rolled down his cheeks from behind his Ray Bans. “Prepare your face to meet the faces you will meet.”

I nodded, snotty, and digging for strength from that place in myself that I didn’t know existed before I had children. I was calm-ish by the time we walked into Liam’s classroom.

We picked up Liam (who was screaming in the bathroom when I got there, but who had a good day at school overall) and went to get some groceries at Trader Joe’s. Adam and the boys stayed in our van while I filled a grocery cart to the brim. I’m not really an emotional eater, but I think I might be an emotional grocery shopper.

As one TJ’s employee scanned my groceries, another one, a cheerful round guy wearing a Hawaiian shirt asked me: “How’s your day going?”

“Pretty shitty actually,” I blurted out, unable to manage a bland “fine”.

He looked worried as well. Then, as I was leaving, he handed me a huge bouquet of sunflowers. “For you, so your day gets brighter.”

I smiled. I cried a bit right there in line. Still smiling, I took the flowers and my groceries back to the van. As we drove home, I thought about this day and this random act of sunflowering.

I got to a place of gratitude about a block from our house.

So, maybe the thing here is not to say: “Wow, things are tough with Liam and might get bad with Eliot. We’re just so tired and our reserves are always running low. I’m not sure if we can do this. This sucks. Why us?”

Maybe the life wake-up call here is to be grateful (something that my friend Kate Di Camillo reminds me of often): grateful that a stranger gave me sunflowers. Grateful that Liam is in a wonderful, inclusive school and working with an ABA team that helps him in every way they can. Grateful that Eliot only has a small heart murmur that might not be anything really. Grateful that I can pay for an overflowing basket of groceries and that I have a home to take them back to. Grateful that the man I love can cry and that he will sit next to me through every punch-in-the-gut-from-life. Grateful that my children are happily watching movies in the next room as I type this. Grateful to be able to put this into words and share it with you.

Grateful that Eliot just put his hands on my cheeks and said: “I will cheer you up Mama! Cheer! Cheer! Cheer! Cheer! Cheer!”

Yep. I think that’s where I’m at now. Grateful.

Random acts of sunflowering. Pass it on.

The last 2012 column from The Autism and Asperger’s Digest is out. Click here to read more:

Jamie Pacton nov 2012 column