Into the Woods Living Deliberately

just notes from jennyalice

Jennifer Byde Myers

Jennifer Byde Myers
Location
SF Bay Area, California, US
Birthday
February 03
Bio
Jennifer Byde Myers is a writer, editor and parent of a child with autism. She has been writing since 2003 at www.jennyalice.com, chronicling her family’s journey from diagnosis to daily living with her son’s special needs. She is a founder and editor of The Thinking Person’s Guide to Autism. Her writing has been featured at Salon.com, Dandelion, Care.com and in several books including My Baby Rides the Short Bus. Jennifer has been interviewed on NPR, most recently on Forum with Michael Krasny, and is a Parenting.com Must-Read Mom. She lives on the San Francisco peninsula with her supportive husband, two wily children and a dog named Gus. Follow her on Twitter at @jennyalice

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JUNE 15, 2011 10:05PM

Not Running Away, Just Running

Rate: 7 Flag

My back hurts. A lot. And my makeup is smeared and my ankle hurts, and my wrist is a little twisted. I am sort of a wreck, but I would chop off a toe with a dull blade if that was also necessary to keep my son safe; a little injury is worth it.. it's always worth it. I will feel better in a few hours, after the adrenaline surge dies down and the kink in my back is ironed out with an anti-inflammatory.

Jake ran away from me in a busy parking lot 20 minutes ago and despite that diagnosis of cerebral palsy ataxia, he moved so quickly that the only way to get him back was to leap and tackle him.. on the asphalt, in the middle of a moving car line at the pick-up where his sister had camp today.

I got a hold of him, straightened myself up and walked on the  campus, my hand firmly around his forearm, no longer bothering with his hand at all. A very kind counselor who could not possibly have been more that 18 noticed me, and must have known that something was up by my demeanor. When she asked if I had a question, I broke into tears and said "My son just escaped my grasp in the parking lot and got away from me. He's fine, but I need to get it together before my daughter sees me." She graciously said, "Why don't I go get her for you and you can take a minute."

Jake and I sat there on the edge of the little playground, me firmly holding a twisted knot of the back of his shirt, his hands sifting through the tan bark. I wiped my tears, assessed my physical damage, pledged not to be angry with my son, and took a deep breath.



Lucy bounded out with the sweet counselor who brushed away any of my apologies as completely unnecessary, and as we left, Lucy said, "Mom, I want to play on the play structure." and headed two feet away from me. I reminded her that she was headed to a birthday party and she happily came next to me and we all got into the car.

Then I had this flash, not of how frustrated I am, or irritated, or disappointed that such a simple errand could not be completed without major incident.. but a flash of how my son must be having all of those feelings and more. When he "ran away," he probably just wanted to play in the tanbark at the edge of the parking lot. Sitting right near our car was a little slice of what my son must think is paradise. That big fresh pile of tanbark just waiting to be spread abut the flower beds at this beautiful elementary school campus, siren calling him, and he probably just wanted to put his little man-hands through every piece of it.

He wasn't necessarily running away, he could have just been running. And how could I possibly know  the difference?

Can you imagine having all of the desire to do something as simple as putting your hands in tan bark, and being unable to do it because you just couldn't tell anyone that's what you wanted to do? Lucy asked to play on the play structure, turned away from me, and I certainly didn't lunge after her.

But, of course, she came back to me. And I know that she would do the same thing in a parking lot, or an airport, or Disneyland. She comes back to me, and before she leaves, she looks both ways to make sure she will be safe. I can count on that. I taught her, and now she knows it, and that's the end of that, and anything other than that is her being naughty, but even at her naughtiest she is always safe.

I remember having a discussion with one of Jake's teachers when he was at his previous school where they had proudly put "I want to go to the bathroom." push-talkers near the door frames of both exits of the classroom, so the children could press the button on their way out the door. I thought it was a great idea, except for the part where Jake is not allowed to get up out of his seat during work time. How could he ever communicate a desire to go to the bathroom if the icon is across the room? How humiliating, how degrading.

Does he live his life with the hope that I will be there to intuit his needs? That his next caretaker during the day will be able to understand his subtle facial expressions and vocalizations. Here I was, so worried about Jake being injured this afternoon, but I'm not sure that it isn't perhaps more painful for him living every day, just hoping the people around him will take a moment longer try to understand what he wants, where he wants to be.

I am crushed to think of how many times I have been impatient with him, wishing he would just do one single thing I asked him to do, when he is probably wondering if today will be the one day that he gets to choose to play on the play structure, linger. But I can't let go of his arm; I just don't know that what we have tried to teach has stuck in there.

And how will my son ever prove to me that he will come back if I can never trust him enough to let him leave?

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Comments

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Thank you for your comments.
Just the fact that you noticed your anxiety about his need for autonomy makes you a great mother to Jake. Be sensitive to this as you are but I would keep a sharp eye out for him. I only say that because I am a nervous mom myself.
My son who has autism, takes off on me too. Most recently he did it and ran right into the ocean. I was surprised my heart didn't explode before I got to him. My son doesn't talk and we are trying to teach him to use a communication board. I see that being a problem when he starts school in the fall. This is so tough, my heart is with you!
Shannon
Miguela Holt Y Roybal: You are very kind. I worry a lot about what kind of mother I am. It is so hard not to shadow him at every moment. At least he gets more autonomy at home where I know the backyard is safely locked up.
John's Mom (Shannon) The ocean can be scary. It's the one place we do not really trust anyone else to watch either of our children. The rip currents are so strong in Northern California.. add a few rogue waves and I can barely breathe!
I think your son may have an easier time in school because the days will probably be very structured, and the kinds of things happening will not vary as much as they do at home/our in the world. It could be the perfect place for him to master a communication board.
You might also look at a 2 or 4 button push talker, that can be pre-recorded with words that match a preferred activity (we used food) so the buttons could be more and all done or 4 across could have drink, cracker, more and all done.
I'd love to hear how it goes.
Jen
www.jennyalice.com
www.thinkingautismguide.com
BlackLily89-
Thanks for your comment. I am always interested in hearing about the growth and development of people with autism.. I am also very interested in hearing the sibling perspective. Would your brother be interested in my other project, The Thinking Person's Guide to Autism (www.thinkingautismguide.com). We do not have very much information by or for the young adult crowd.
you may email me if you like at jennifer dot myers at gmail dot com