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In Their Own Words – Good Days and Bad Days

September 16, 2010 17 comments

This “In Their Own Words” is by Dorie Deebold, a mother of two children, one who has autism.

Our three-year-old son Pierce has autism – and we try our best to plan routine family outings for him and his older sister that we will all enjoy.

As is typical in any family, there are good outings and not-so-successful ones. For me and my husband who are relatively new to this strange new world, it is increasingly difficult to determine what outings will be a great success, and which may prove difficult for Pierce to navigate.

Before school started this year, we wanted to take a trip to Sesame Place.  Knowing how Pierce and his older sister loved the Sesame Street characters, and armed with the confidence that Pierce had experienced water parks this summer with success, we were all excited for a fun day.  However, this particular outing  would prove to not be one of Pierce’s best.  Something about the venue did not work with Pierce’s sensory system on this date, and it was a continuous struggle as we worked through the day of meltdowns, flopping on the ground and the consistent screeching of “We. GO.  HOOOOOOOMMMMMMME!!”

As difficult as it was, we were determined to stay and allow Pierce’s sister to enjoy the Park.

Late afternoon came; while Dad and sister were adventuring on rides, I tried to coax Pierce into his bathing suit to try a small water park – which generally he would love.  But the sand on his feet, the swim diaper, the direction we chose to walk there – everything seemed to be sending him into sensory overload.  It was all too apparent that he could not adjust to this environment today.

I found myself questioning again on this afternoon (knowing full well how non-productive this line of thought can be):  Why?  Why, why, WHY can’t he tell me?  Why can’t he tell me why this day, this place,  this particular routine was so hurtful.  What was it?  The music? We’d been to a festival with bands and he danced the day away just weeks ago.  The crowds?  It was no more crowded than the boardwalk was last weekend.  This mystery of why.  Times like these, I desperately wished to get in his mind to see the world from his eyes, to try to unlock this puzzle.

So I retrieved a sobbing Pierce from his curled-up position and wrapped him tightly in a towel. We found a lounge chair in a quiet area by the “Mini Tidal Wave Pool”  and both relaxed.   I  sat there whispering to Pierce how much I loved him, and how proud I was of him for all the work he’s done. Sitting there on a beautiful September day, watching all of the children play, I closed my eyes and felt us both relax from the high anxiety of the day. And we slept.

When we both woke up, Pierce looked up – dazed and tired – and smiled the first smile of the day.

“Pierce, do you think we should head home now?”

“Okay, Mommy?”

And off we went to find Dad and his sister.

Good days and difficult days – I reminded myself.  And we can’t appreciate the one without the other.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

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