This guest post is by Larry Duffy, one of our walkers from St. Louis Walk Now for Autism Speaks event.
We walk For Pete’s Sake. That is the name of our team that has participated in Walk Now For Autism Speaks in St. Louis for over ten years now. While it is an agreeably perfect name for the cause at hand it is actually a bit of a misnomer. We in fact walk for the entire family’s sake. Not just for Pete but for his twin sister Ella, his mother and tireless advocate Jenny and myself as well as innumerable grandparents, family members, friends and acquaintances who have accompanied Pete on his occasionally frustrating, always fascinating journey with autism.
Pete is 16 years old now and we walk to remember every step of his amazing journey both good and bad. We walk to remember the day he was born and the promise and wonder that day held. We walk to recall the little idiosyncrasies we saw in his infancy that we innocently misread, the hanging upside down and the fussiness we attributed to gas while telling ourselves that girls typically develop faster than boys. To remember the day when Jenny called from the neurologist’s office and I first heard the word autism in connection with my son and how I foolishly, ignorantly felt somehow a tragedy had befallen us.
We walk to remember a family vacation shortly thereafter with the warning still fresh in our heads that Pete may not be capable of showing affection in the manner we might expect. We were visiting a Sesame Street theme park and rejoiced when Pete, hesitatingly at first, approached a costumed teen dressed as Ernie and gave him a long and genuine hug.
We walk to remember all those long, countless hours of therapies Pete spent indoors on beautiful days learning to communicate while the rest of the neighborhood kids played outdoors in the sunshine. We walk to celebrate every therapist, specialist, doctor, teacher, family member and friend whose dedication and passion helped bring forth the articulate young man we know today.
We walk to remember the difficulties we’ve faced along the way. The challenge on Halloween nights when while trick-or-treating Pete would be compelled to bolt into the opened door to see the ceiling fans in every house. It turns out the candy was secondary to a kid who loves candy; the real treats were those fans. The challenge to keep him out of every women’s restroom in every public building he entered as a child because he simply had to inspect the plumbing.
It did not matter that he had already visited the men’s room since there was always the chance that some different, exciting, can’t miss old or new fixture may have been used in the ladies room. We walk to recall the indignant stare of the young woman outside the Chicago History Museum who went out of her way to make clear her opinion that we were the worst parents ever for not properly controlling our child in the midst of a major meltdown brought on by sensory overload as we frantically tried to console him. Oh yes, and for a hundred more just like her. We walk to remember the time we were at the end of our ropes and so thoroughly took our frustration out on each other. Screaming horrible invectives in an outpouring of therapeutic anger while standing on the sidewalk outside the venerable home of Abraham Lincoln in Springfield Illinois, in a marital battle of finger pointing that made the Civil War look like a taffy pull.
All because we put ourselves in the situation of having to remove Pete in the midst of the tour after he had determined to jump on Mr. Lincoln’s bed and resisted fiercely upon our denying him this opportunity. Note to parents: Don’t let anything stop you from providing any experience you may wish your child to have. They don’t all end so badly and remember there are plenty of non-autistic kids throwing tantrums too and for a lot worse reasons than wanting to jump on our 16th President’s bed.
We walk to celebrate his varied interest and quirks both of which are plentiful. His love of Wheel Of Fortune and his extraordinary puzzle solving skills with few if any letters visible that could win him big money should he ever get an audition.
We walk to remind ourselves of the humor and wisdom that he has brought into our lives. For instance the time on another long trip many years back, when we stopped at a particularly suspect restroom to relieve ourselves. Dad at the urinal and Pete in the stall when I hear from within his little voice exclaim, “Waiter there’s a tomato in my toilet!” “A tomato?” I asked. “Well, it’s round” came his reply. Funny stuff!
Or the time when exasperated by a son who was still wanting to watch Barney, long after the big purple dinosaur had worn out his welcome in our home, I asked the question, “Why do you like Barney so much?” “Because he’s kind” was Pete’s reply. End of discussion. I had no argument to justify my desire that he watch something more age appropriate and in all likelihood more violent and ugly.
We also walk to celebrate the “typical” days of which there are many. The days when we get our sometimes wish that he behave in a manner more in sync and appropriate to the society he will have to navigate the rest of his life. How odd it is to find yourself celebrating when you catch your son in his first lie because he’s demonstrated “typical” behavior. When as a boy he asserted himself, like may other typical boys before him who decided they don’t like their given name, we reluctantly started calling him Pete instead of the intended Peter and were secretly pleased that he felt so strongly about it.
We were thrilled when he went to a High School dance even if that first slow dance was even more awkward than for most kids. At the age of sixteen Pete has had his first summer job, is working towards a drivers license and is considering which college he would like to attend. He is also exhibiting many other typical teenage behaviors such as keeping a very messy room and eating us out of house and home, so be careful what you wish for regarding typical behavior.
Finally, we walk to celebrate the polite, charming, funny, decent and dignified young man our son has become. We walk to remind ourselves of those earliest days when we may have felt some misfortune had found us. It didn’t take long to realize that what had really occurred was a genuine blessing in the lives of anyone who has ever had the good fortune of knowing Pete.
The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.