Friday, April 12, 2013

Escape Artist

The following story is by a PHA family member. In it she looks back on her time caring for her autistic daughter at home. Stephanie now lives at Sonoma Developmental Center.

If you would like to share your story on the web site, you can email it to info@parenthospitalassociation.org or send it by regular mail to Parent Hospital Association, P.O. Box 237, Eldridge, CA 95431.

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Adventure must start with running away from home.
~William Bolitho

"Sally, why was your sister in my back yard this morning, naked?" asked Margie, our little five-year-old neighbor. It was mid afternoon and all the kindergarteners had just arrived home from school. Everyone knew each other in our small neighborhood, so Margie was comfortable walking over to our house. She stood in the doorway waiting for an answer.

It had been a pretty typical morning. At around seven o'clock on this lovely spring day, when all six of my children were waking up and getting ready for school, Sally's sister, Stephanie, made her escape. Stephanie never wanted to be encumbered by clothes but preferred to run freely without them, which created a struggle when I tried to dress her. She was getting bigger, stronger and more difficult. She looked like a typical, healthy eight-year-old, but Stephanie was autistic. She could not communicate well, but that didn't take away from her incredible determination to get what she wanted. She would steal a French fry right off your plate even though you told her she couldn't have one.

I used to think motherhood would be orderly. When Stephanie was born, I had visions of dressing up my new baby and pushing her around in a stroller. This didn't last long because Stephanie soon learned to climb out of the stroller and run away. She has been running away ever since.

At least we lived in a safe neighborhood for a child who liked running away. The neighbors always kept an eye out for Stephanie.

Our white stucco house with the red tiled roof looked standard on our block, but there was one big difference -- we had a more extensive lock system than any of the other families. For some unknown reason the front door was not secured on this day, and Stephanie got away, running down the block naked.

I thought that Stephanie was downstairs. When I realized that she was gone, I panicked. Eight years old and fleet as a deer, she could disappear quickly, and I wouldn't be able to find her. It didn't even faze me that Stephanie would run around the block naked; I just wanted to make sure she was safe. She was not careful about crossing the street, and I was afraid she would get hit by a car.

I was reminded of the time Stephanie ran away the year before. The police had brought her back to us after she dashed across Sir Francis Drake Boulevard, a main road in our town, and ended up at the local high school.

As I ran down the street looking for my naked girl, frantic thoughts were running through my mind. Stephanie could have run off with a stranger. Maybe that wasn't likely, but it felt like something to be afraid of at that moment. If Stephanie went into someone else's house, I wouldn't be able to see her or know where to look for her.

Even though I was a wreck, shaking with fear, Stephanie's siblings did not get upset. They just helped look for her before moving on with their day.

This was a typical reaction of Stephanie's siblings to their autistic sister -- just deal with the problem at hand and then move on with your plans. She was just one of us, a sister to be accepted, loved and protected.

I was still running down the street searching when I saw Margie's mother in the Chan's yard. "Erin, here we are," Maxine Chan called to me, holding Stephanie's hand. Steph as as happy as could be without a stitch of clothes on. As they walked out of the Chan's yard, she looked at me and smiled bigger than she had ever smiled when she was bogged down with clothes.

Because Stephanie couldn't talk, we had to learn to look at her face. That's all we really went by most of the time because there was no conversation. One of Stephanie's most telling expressions was when she would shiver with joy.

At that moment, maybe she was just cold because she was naked, but I think she was shivering with joy. As her mouth spread so wide that you could see every one of her teeth, she tightened her arms to her sides, her face turned a shade redder and her torso and head quivered back and forth so quickly that you could barely see the movement.

The tension drained from my body. The neighbors always took care of Stephanie. Everyone knew why Stephanie was the way she was. It made me feel like my neighbors were an extended family.

I met a woman who lived in an apartment in San Francisco with an autistic son similar to Stephanie. She told me all of her neighbors acted as though her son was some weird kid and never reached out to her. We were so fortunate to have our neighbors, since the people surrounding Stephanie made all the difference. My life and Stephanie's life would have been drastically different without them.

Not fazed in the least by Margie's question, Sally responded, "Oh, she got away from my mother when she was trying to dress her this morning." These two little girls had more important business at hand; Margie had come down to our house after kindergarten to play with Barbie dolls.

~Erin O'Donoghue Thompson

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