The Patron Saint of Ethan

“You may mean the world to someone, and to someone you may be their world."

Janet Olsen

My friend Janet, when she wrote that, was paraphrasing a statement uttered by that famous philosopher, Unknown. I like Janet's version over the original, and so I'm sticking with it.

Over the past year a friend of ours Melinda Dempsey, Ethan's occupational therapists, has been suggesting that Evie and I write a book about how our family deals with Autism. Having given this much thought I found it difficult to come up with what I considered a novels worth of ideas, stories, or anecdotes about the subject. However, I figured I had plenty of little short stories to tell, from which I have learned lessons. So, with that said I opted instead to write a blog, a shotgun splattering of random thoughts. I hope you enjoy the musings of a special needs family.

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It was a day like no other. Yet, as days go, it was not out of the ordinary, don’t get me wrong the arrival of your third child, the arrival of any child, is beyond description, an experience you never forget. This arrival was met with all the joy and excitement as the births of my other children, but it was-as doctors put it-unremarkable. The delivery went as planned, and I mean planned as in literally scheduled. No complications, no bells, no whistles, no alarms, no noticeable chromosomes added or missing, no distinguishing features, no nothing.

Tucked into the corner of that little delivery room at Thunderbird Hospital I welcome Ethan's arrival. He was a perfect 8 pound 6 ounce baby boy--blue eyes, blonde hair and a dimple on his chin just like dad-that would be me. As newborn infants go, he was the perfect dried-apple-face-wrinkly-newborn-baby, ten fingers, ten toes, everything was perfect and in place just like billions of births before. But there was something else, something unnoticed, something that would make its self known over the next few years. You see I had just met autism, we had met, had shaken hands so to speak, and I didn’t even know. But, that would change. . .

Several years ago, while going through the process and completing test after test, struggling to find answers to our questions about Ethan, I came across this poem by Kelly Graham. It struck an all too familiar cord with me-in fact Ms. Graham must have been peaking into our kitchen window when she wrote this poem about her son.

I am Ethan
You may not understand me, or the way I feel today.
You may not understand my reasoning for things I do or say.
The reasons why I'm so loud and say things over & over again,
Why I run so differently or lose my homework every now & then.
I write my letters backwards and sometimes numbers too,
and when in a conversation, I'll say "Guess what" 100 times to you.
Too much noise, light, or excitement can set me in a spin.
I don't like the way these pants feel rubbing against my skin.
I try to be good, but sometimes it's hard to control,
I have to do it, it's an impulse, I don't always do what I'm told.
Ketchup, Ranch and BBQ sauce on everything I eat,
sometimes I have days that I just can't sit still in my seat.
I like to talk a lot even when it's out of turn,
my mind plays tricks on me and interrupts what I'm trying to learn.
Sit up straight, wipe my face, and play ever so soft,
some of these things I have trouble with and I usually lose my train of thought.
I didn't mean to spill the milk mom, or slam the door so hard,
everyone else is done with their homework, I don't know where to start?
My heart's as big as gold, my feelings get hurt too,
I get sad, cry and have bad days just like you.
My brain works differently than other girls and boys,
but one thing always holds true, I can give your life so much joy.
I get frustrated so easily and my hand won't work that way,
I don't understand why those other kids won't let me come over and play.
Please don't think of me any differently or love of me any less,
I'm just like other kids and trying to do my best.
I am very special in my own unique way, and every moment with me
you'll never have a dull day.

For the most part life with a special needs child is not much different then any other day in American suburbia, where everyday is a day like no other . . . :)