"The Walk"

I have a confession to make.  I am not excited about attending this year's Family Fun Day and Imagine Walk for Autism, sponsored by the Autism Project of Rhode Island.  I recently  sat down for coffee and conversation with a fellow "mom on the spectrum," and she reluctantly made the same admission to me.  She was not really looking forward to the walk either. 

I am a self-described autism veteran.   I have a fourteen year-old son with autism.  I have been attending the walk every year for well over a decade.   I have always looked forward to assembling my family and friends, proudly adorning our "Tommy's Team" blue t-shirts, and attending the event on the one day of the year when having autism is not something to be hidden but something to be highlighted. But this year  I am indifferent.  It would be fun to go but if I did not go, well, I would not really care. 

When I began participating in the walk ten years ago, my son was only four years-old and a total prisoner of autism.  Tommy could not communicate with any words, threw temper tantrums when he became frustrated, and was not toiled-trained like all of the toddlers I knew.  The day of the walk was liberating for me and my family.  I did not need to worry about how it looked when Tommy rotated in circles while hand-flapping or broke into shrieking wails when his helium balloon floated up to the sky because every other child was behaving in the same manner.  There was emotional safety in numbers for moms like me.  For once, my child was like, not unlike, the other children around him.

At first, I embraced the fund-raising aspect of the walk,  petitioning friends, family, and co-workers to support the cause with donations.  I wrote a poignant paragraph online entitled "Our Little Hero" and raised over one thousand dollars on one of my early walks.    Tommy was making slow but steady strides at that time, and it was easy to admire his tenacity and cheerful demeanor.  I asked everyone I knew to walk with our team, and a huge crowd of supporters would gather each year to support Tommy, to support us, to support autism.  The lines blurred and there was no longer any distinction between the disability and the people affected by it.  I let autism define me and by default, define my son.  I was not simply a mother of a young boy, I was the mother of a young boy with autism.  The day of the walk was our one day to shine, to feel included, to feel normal.   I could not see how flawed and destructive my perception was at that time. 

With each passing year the annual Family Fun Day became larger. There were growing numbers of children with autism and their supporters, most wearing multi-colored and decorated t-shirts with slogans and team names.  The number of caring volunteers also grew in number, as more help was needed to man the food stands and tables with activities and crafts.  There was now music and performances from a karate school.   Pony rides and a reptile display amused the crowd.  Cotton candy and freshly popped popcorn, free frisbees and tote bags, and even a van serving hot chowder kept the participants fed and entertained before and after the actual walk.  Of course, the inflatable bouncy houses and balloons remained favorites. 

It is I and not the walk itself that has changed over time.  I was once a young mother who felt overwhelmed by the enormity of the challenges I faced raising a son with autism.  As the years passed my experiences gave me confidence in my ability to make appropriate decisions for my child.  I began to see my primary role in my son's life as his mother, not as his savior.  I did not have to fix him because I learned that I had no such power.  I was not going to "cure" his autism.  His entire development did not hinge on any single decision I had to make.  I just had to love him, accept him, and do the best job I could to help him grow and reach his unique and individual potential- like any other mother would have to do.  I learned that I needed to let go of feeling burdened by Tommy's challenges and focus on living my life as a mother of two children, as a wife, as a person myself.  Autism was always going to impact my life, but it did not have to be my life.  Autism did not have to define me. 

Only a few die-hard family members and friends from "Tommy's Team" attend the Autism Family Fun Day now, as the novelty of participation has faded for us all.  I no longer focus on fundraising or drawing every one's attention to the challenges we face. People who know me and my family are already aware, and every family has obstacles to overcome.    Attending the walk has a different meaning for me now.  I no longer need to wait for one single day to feel that it is acceptable to have a child with autism.  That acceptance has come from within my own heart.