David Kirby: Amanda Peet vs. the Medical Establishment
A Foolish Consistency

Autism Twins

SahdowAutism Twins

My son was kidnapped at shotpoint.
A twin left in his place.
A weaker body.
A shadow self.

He is a sweet, sadder child,
who tantrums and screams and rolls on the ground.
Who is scared. In pain.
Mourning who he used to be.
I can see this in his eyes.

He misses having a body that works.
And he misses his laser-fast brain
And chuckling at his own jokes.

He used to work the  room
A little politician
Grinning at everyone he saw.
Playing tug of war with the dogs
Experimenting with the piano
Piano and dogs now, he leaves,
utterly alone.

And when I spend too much
Love and dollars and time
to free him,
Am I forgetting
The one who is left
Who is still here
Who needs to just be
A child
sometimes?

He needs me
to stop mourning,
He needs me to celebrate him
and I do, I do celebrate him.
If this is all he can ever be, it's enough, and I love him forever, still.
But  how can I stop mourning, and how can I stop trying to rescue him,
When his struggles remind me of his missing self.
He is his own shadow.

Is his twin disappeared, forever?
Or is he still there?
Locked in a neuron forest in his own brain.

If he is gone forever, unsaveable, dead,
How do I know for sure?
If he is gone forever,
I need to move on.
I need to let go.
I need to embrace what IS.

But when I embrace what is,
And accept that this may be all he can be,
And let him roll aimlessly on the sand
And cancel therapy for today
putting the flashlight down for a while
who else will carry on the search?

He does something startling.
He's back for a moment.
A glimpse!--is that his twin,  over there, hiding behind that last tree in the grove?
the tree I was too tired to walk to a moment ago?
Will we find him again
in the therapy I didn't try?
the supplement I forgot to give?
the new idea even I scoffed at?
what if we give up one moment too soon
the moment right before
we were about to find him?

Carolyn Coughlin lives near San Francisco and has worked in high tech for 15 years. Carolyn uses the analysis and science skills acquired to obtain her degree at Carnegie-Mellon to evaluate interventions for her child. This poem describes struggles from the time her son was about 14 months of age. Thankfully, he has responded well to many interventions and therapies, including DAN protocols,  HappyTalkers, speech therapy, OT, AIT, Thoughtfulhouse, and neurofeedback.  Now 7-1/2, he has his sense of humor back and asks why there is war. Yet, he still won't play with the dogs or touch the piano. His sensory issues prevented full success even in an amazingly supportive inclusion setting,  so he is now in special classes. Educational, biomed and IVIG therapies are on the horizon.  Contact Carolyn at carolyn@watermelonsky.com.

Comments

Carolyn KylesMom CA

I want to update this. My child still struggles, but he laughs at our jokes, and makes his own.
He still shirks a bit from dogs (because barking hurts his ears).
He never did go back to piano, but he loves music.
He struggles with gut issues, and is far smarter than his grades, as a mainstreamed Junior, reveal.
But yes, we found him.
Thanks to all of you, and all of your support and ideas and stories you shared, we found him. He is back, he is him, and he is very, very loved.
My prayer for all of you who are still leading your children back, is that you find the miracle that brings back your child. The journey is like Christmas, you unwrap one gift, a first step back, and you marvel joyously. Or maybe more like Hanukkah, as it is not all at once . . . . a very long Hanukkah that takes years . . . there is also so much joy watching your child get back what he or she lost.

fatherofanautisticdaughter

Wonderful poem. Those glimpses give me hope for my daughter, as well. I hope they are glimpses into the future. Thanks again for the perfect poem.

Jennifer Hearrold

I really don't know what to say... you captured it perfectly. The feelings, needing to move on but you can't, because too much acceptance... might get in the way of helping them get out of their "body prison", and my daughter's body is her prison, she can barely communicate at all. I know its not that way with all autistic kids (thank goodness). It's not that my daughter can't be happy there... her smiles and rare hugs tell me that she is... I just worry about the future.
And I agree, if you know someone who just doesn't get it, this could be helpful to bringing understanding, very well written.

dmw

That was beautiful. Your son is so lucky to have you as a mom. Not only are you a great mom, but you've got the ability to 'see' what others cannot - including his "twin". The twin isn't gone... it's just inside of him. It will reappear on occasion and, hopefully, one day will take center stage.

We just don't know where our children will be in six months, a year, or ten years. We can only love them and do what we can to help them. Sometimes it is enough, and sometimes it isn't. We're only human... and moms.

Thank you so much for sharing, and for the insight.

Leanne Veitch

Thankyou thankyou thankyou for sharing something so personal and so beautiful.

I miss your son too.

ln

I am amazed by this poem—I read it over and over again. This poet’s stunning use of metaphors and imagery captures of what many parents in this situation are faced with every day: the ongoing, paradoxical, and at times agonizing struggle both to try to accept “what is” and to continue to try in every possible way to see if there might be new ways to help their child. And at the same time, letting the child just be a child, all the while concerned about setting down the flashlight, as she writes, in case there’s a glimpse of the twin behind that one last tree in the grove. This poem is *incredibly* powerful.

If you are trying for the umpteenth time to explain this predicament to someone who just can’t fathom it, send them this poem. This can be the way to get through to them. Like all good poetry, it is far more than an explanation—it is a vivid story that also shows the achingly poignant voice of a parent who is struggling mightily with this. The poet speaks, from the heart, for thousands of parents who are going through the same thing.

This writer is extremely talented, and I hope to see more of her poems.

Robin Dicks

This poem is a wonderful expression of how having a child with autism can be such a joy and a heartache all at once.

As mothers we tend to always second guess ourselves. We try to save our children.

This poem is another reminder that we can let go, and let our children be who God has meant for them to be.

Robin Dicks
www.DealingWithLearningDisorders.com

jk

This brought me to tears. Thank you so very much for sharing.

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