None of us are
kyra anderson | Wednesday, September 30, 2009 at 8:22AM LISTEN TO THE MUSTN’TS by Shel Silverstein
Listen to the MUSTN’TS, child,
Listen to the DON’TS
Listen to the SHOULDN’TS
The IMPOSSIBLES, the DON'TS
Listen to the NEVER HAVES
Then listen close to me--
Anything can happen, child,
ANYTHING can be.
One summer day about three years ago, I was standing on the beach with a friend, looking out to the sparkling sea. Her kids were splashing in the shallow water. Fluffy, unable to play without being aggressive, was battling the waves with his dad twenty yards away.
“I think Fluffy will be through the worst of it by the time he’s eight.” I suddenly announced.
“Why that age?” She asked.
“I don’t know,” I answered. “That number just keeps popping into my head.”
Eight.
I never bought what anyone told me about Fluffy’s Asperger’s, that it was life-long, that it was dire, that he wouldn’t be able to read faces, body language, have empathy. But I was afraid, worried for him, for what it all meant about his future, his happiness, his independence, his quality of life.
I was not surprised by my capacity to provide what I thought he needed but I was surprised by how completely it swallowed me up. I did so much because I could. It was a problem. I hit the ground running, like a marathon I hadn’t properly trained for. I was going all-out, all the time, but there were no card tables on the side lines with Dixie cups and orange slices, no big bowls of pasta to carbo load and more importantly, no finish line in sight.
I was searching, always searching it seems, for what Fluffy needed, for what I needed, for answers to the question that baffled me most of all--how could I help my son feel safe with other kids?
Sometimes I felt close to cracking up. Maybe it was my melodramatic, extroverted nature that plunged me through these low times. And maybe it was my melodramatic, extroverted nature that yanked me out of them. I never did lose it but I did shut off certain rooms. It was a severing but for me, also a strength. There was something necessary about it, the descent into the underworld. Like a maiden in a fairy tale, the transformation has to happen in the dark.
I feel it’s important to say because of the recent video depicting Autism as an enemy that steals children and wrecks homes that I don’t mean Fluffy’s underworld, or the underworld of Asperger’s. I’m not talking about the dark and difficult aspects of Asperger’s or Autism here though I believe they exist. I’m talking about my own underworld, the unexamined, unearthed parts of myself.
Diamonds are born 50 miles beneath the earth's surface. Pearls are formed from grains of sand beneath the sea within the folds of a bivalve mollusk. Gravity and great forces birth stars out of swirling gas and matter. The hardships of life are not designed to enrich us but they can if we’re willing to go underground, dive into the deep, stay in the heat of the fire.
How can I teach my son about wholeness if I am not expanding into my own wholeness?
About a year ago, I got that it was out of my hands. I couldn’t make Fluffy not autistic. I couldn’t make him have friends. I knew I had done everything I could think to do and I knew I would continue to do so but I got that I wasn’t that powerful. And trying to be that powerful was sending a message of fear. To my son. From the core of me.
Was the fear because of his Asperger’s? No. It was because I am not in control. And I fear that lack of control. I want to control as much as he does. I want certainty, predictability. Okay, maybe not as much but in the same vein. It’s what I feel I need for safety.
So what did I do? I straddled. That’s what I do now. Straddle. I straddle the lines in the talk of autism, in the realm of teaching and guiding and stretching my son, in the land of communicating with my husband, in the on-going struggle with my own resistance as I shape my emerging self. Sometimes I do it well. Sometimes I don’t.
I’m getting comfortable with the straddle posture. You have to stay open to where the line is and it’s always changing. It’s sort of a swagger but it's more vulnerable so no one thinks you’re trying to be tough. You may look a bit odd but that can make people curious and that's what I want. Curiosity from others. From myself.
This past spring, Fluffy had a playdate. We were at the start of using The Nutured Heart and so I was doing what I could to energize the positive and give simple, short Resets when rules were broken. Still, he bellowed his words, conducting the game as if he were at the scene of a burst dam, such was the intensity.
Dave pulled me into the kitchen, his face tight. “What can we do?" he implored. "How can we help him?”
My heart beat normally. My body didn’t surge with adrenaline. I didn’t slap him down for asking me to fix it or hatch a plan or race into the other room to orchestrate connection. I said, “I don’t know. I’ve done everything I could over the last four years and you know what? That’s just who he is right now, at this point, doing his best to play with a friend. That’s just what’s happening now. He’s eight. He’s only eight.”
Who’s to say it ought to look any different? Which is not the same as saying, there is something wrong OR nothing can or will ever change.
I’m his mother. He hung the moon, isn’t that what all parents say? He hung the moon and then danced at the water’s edge.
I still get anxious but I’m breathing more deeply these days, big lusty breaths, like Fluffy when he reaches his face out the window to gulp the air to get extra oxygen he says he needs to feed his muscles.
“Mommy, I can feel my body breathing even when I’m not thinking about it.” He said to me one day. “ Listen: It makes a sound like it found something and then it lost it again, like it’s surprised and then a little sad.”
Breathing does sound like we found something and then we lost it. Like the tides--the moon inhales and lays bare the shining wet sand and then exhales and all is covered once more. Here and then gone. Over and over.
I’m finding my way. Fluffy is finding his. He’s eight, the magic age, the age I thought he’d be when he was through it all.
He’s not.
None of us are.
Reader Comments (18)
You've captured this so perfectly. Yes, I thought 8 was a magic number too. But there is no magic. We do the best we can and we teach them to do the same.
I don't know how you d it, my friend. Just when I am at a low point and in need of gentle, healing, nurturing reassurances your posts appear in my reader. No accidents.
I need to remember that what we are dealing with is out of my control. I can no more control it than control the moon or the tides. Thank you for this beautiful reminder. And the breathing...the sounds of finding something then losing something over and over. Fighting it becomes exhausting. Perhpas I should simply BE with it.
Thank you for your gorgeous words and your wise and loving heart.
Fear, the need to control, straddling that line -- Yes, yes, and yes.
It is an ongoing challenge, to find that balance. But we owe it to them, and to ourselves.
Thanks for this.
god, i could just eat your writing,
this -
'You have to stay open to where the line is and it’s always changing'
that's what got me most.
i've been so aware of the shifting lately - the constant evolution. i'm just starting to really, truly understand that by its nature, this journey demands not just endurance, but agility, maneuverabilty, OPEN-NESS.
the breathing - the finding and losing, the taking in and letting go - it feeds the process, pushes us forward, or sideways, or upside down, past comfort and into understanding.
thank you, kyra. you've done it yet again.
Kyra -
This is so amazingly you. I gulp your writing down, too. It's just so simply, wonderfully, amazingly you.
love.
I've been feeling pretty low these days and trying to pinpoint what it is... after reading your words here I know that it's me feeling out of control. You have such a way, Kyra, of illuminating experience. I always feel better for reading. Thanks!
"It makes a sound like it found something and then it lost it again, like it’s surprised and then a little sad"
Still crying over that sentence. I don't know why, but it got me somewhere really deep. Need to think about that one.
But everything about this post is pure perfection, so dead on.
Thank you.
“ Listen: It makes a sound like it found something and then it lost it again, like it’s surprised and then a little sad.”
Your boy is brilliant.
"Diamonds are born 50 miles beneath the earth's surface. Pearls are formed from grains of sand beneath the sea within the folds of a bivalve mollusk. Gravity and great forces birth stars out of swirling gas and matter. The hardships of life are not designed to enrich us but they can if we’re willing to go underground, dive into the deep, stay in the heat of the fire."
So are you.
I thought the magic number was 8. I figured out that it's 43 and a half, at this hour, at this minute.
And the straddle? Been doing alot of that myself. Just got to keep the center grounded, and unclench the butt cheeks every once in a while to keep the balance.
Like everyone else here, I'm sort of in awe of you, your words. And your Fluffy.
thank you all so much. i feel honored by your words!
it's the straddling, yes? we all relate. maybe we ought to start a Straddlers Club. every week, someone new will bring the line and we'll unclench our butt cheeks (thank you Drama for pointing that out. the butt cheeks MUST unclench!) and straddle straddle straddle.
i suppose we'll need wine as well.
Thanks for this post. I wish you had been writing when my own son was 8 (and 9 and 10....) I too set up magical milestones, probably to give myself hope when I was without hope. Straddling on quicksand and every day felt like a sad take on "what fresh hell is this" though we sure weren't at the Algonquin..
While there were no milestones, somehow, painfully slowly, we're in a better place. My son is quirky, funny,19, enrolled at university, showing his art work next week at a local conference. Maybe I've just accepted that while there is no light at the end of this particular tunnel, maybe, just maybe, I can handle the ride and every now and then unscrunch my eyes long enough to take in the view.
Not sure when you get to unclench the butt, though.
You know I forgot that 5 was supposed to be a magic age, the magic age for speech. I guess most "experts" believe that if a child doesn't speak by 5, they most likely won't. I never worried about that until now, when 5 is only months away. My son with Autism is the noisiest nonverbal kid you'll ever meet! But he can't tell me his tummy hurts or he's bored. Of course it's more than speech. I'd be thrilled if he could sign it or even just gesture.
I'm a long time lurker here and at "This Mom". We've been doing RDI since January and I am trying to heed Dr. G's advice regarding speech without thinking, but some days I want to hear his little voice so much! Recently though that fifth birthday is haunting me...We've lived thus far without speech. I would even dare say he has blossomed some since beginning RDI and horseback riding. I know that some of the blossoming is us/me, how I interact with him. I trust that he will find where he is supposed to be and that I can be there to support him in every way, but there are days...
I love Autism. I hate Autism. I adore my little guy and all that he is, and I hate my own shortcomings in accepting him as he is.
Thanks for your thought-provoking words!
D--i love hearing about your son! i wish i could see his art work!
April--thanks for commenting. i'm so excited for you and your little guy! RDI is a phenomenally powerful program for the whole family. i love that you are seeing him blossom.
i can't imagine what it's like to wait almost five years to hear your child's voice. i know there are some who've been waiting longer. i won't pretend i can say anything helpful or sage on that topic but i do believe that "anything can be" as shel silverstein says in his poem.
sending our best thoughts to you xxx
Ditto everyone! So well said, Kyra!
Here's to straddling!
I love the image of straddling -- I always use the tightrope image and need to mull around over yours. I like it. And this post is simply beautiful. But, then again, your words ALWAYS are.
Kyra, your words calm and lull me like the tide. And Fluffy assigning emotions to breathing - phenomenal. The picture he painted will stay with me forever.
Love this piece and can relate more than I wish I did...
My son i such a relaxed spirited child. The only time he really seems to act up is the the fall time when his allergies start acting up. OK so like 3 yrs back I came across Flonase over the counter. at "kiwi drug". Which I found to have so many articles on allergy care. I am so thankful for Flonase bc I can not stand the teachers calling me in the middle of the day bc my son is looking sick form his allergies. At least now hes not missing school.