Monday, April 2, 2012

Out Of The Grass - Autism Awareness

I've been sitting here for at LEAST an hour.

Starting. Stopping.
Starting again.

Today Is Autsim Awareness Day.

Which means I thinking of . . . . . well a whole bunch of things.

But mostly, of MY Ethan.

His Dad [my Brother-in-law] blogs about their journey though life with their one very special Ethan.

You can find his blog [here] .

I have copied an entry of his [since apparently, I suck at putting my feelings into words].

Hey Jeff . . . . . ILYF.

Ethan was born in 1996. His arrival 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 any child is beyond description. It is an experience you never forget. Ethan’s arrival was met with all the joy and excitement as the births of our 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 disfiguring features, no nothing.

Tucked into the corner of that little delivery room at Thunderbird Hospital I welcomed 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-wrinkly-face-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 reveal its self over the next few years. You see I had just met Autism. We had shaken hands so to speak, and I didn’t even know. But, that would change, boy would that change.

For two years, beginning at age four, we had sought out professionals, spoke with school officials, endured tests, took exams and underwent evaluations. Initially Ethan was diagnosed with Sensory Integration Dysfunction. A few more exams later and we added Attention Deficit and Hyperactivity Disorder. Further exams added further labels, this time to include Obsessive-Compulsive Disorder and Generalized Anxiety Disorder. A few other terms were thrown in for good measure, with quantified between ‘moderate’ to ‘severe,’ such as Developmental Language Severe Delay. All these terms were Greek to us, then we were hit with the Latin term Echolalia. Finally, at the age of 6, Ethan was officially diagnosed with Autism.

As we sat with the doctor that day, prepared to hear the results of the tests, the doctor began by asking us a very simple question: ‘What do you think Ethan has?’ We answered, ‘Autism.’ The doctor gently replied, ‘You’re correct.’ He went on to explain the test results, the Autism Spectrum, the diverse manifestation of Autism, and where Ethan fell on the spectrum. As we left that afternoon, I was grateful for how the meeting had happened. After all the exams and tests, the results were also compared to our personal observations. By including our views in the evaluation, the doctor had unknowingly provided a tender mercy; Ethan’s diagnosis would never simply be the doctor’s verdict but our conclusion.

Since that day, a friend, Melinda—Ethan’s former occupational therapists—suggested I write about how our family deals with Autism. Eventually I gave in to the idea and began to write a blog. Initially I wrote more for therapy, as a way to get things off my chest: to spit out my thoughts so I could look at them from a different perspective, find the underlying opportunities in the struggle, confirm I wasn’t crazy, and discover that there was purpose in all of this.

As I blogged, I came to realize that, maybe, just maybe, there was something in our story that could help special needs families find, as Melinda suggested, ‘much needed humor, inspiration or just reminders of why we’re here.’

For 15 years I have specialized in my son’s style of Autism. Though I am far from being expert on it, I have lived with, studied, and observed his style of Autism first hand, and I think that qualifies me to some extent. During those years I have learned that every day is an adventure. Some days are categorized as good and some bad.

I have a phrase that hangs from the wall of my office cubicle:

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

It is a gentle reminder to me that I am his world, and he is mine, and we are at peace with that.

Being at peace, however, does not always mean things are easy, calm, or without exacting moments of frustration. It does provide the ability to see the light at the end of the tunnel, and find the deeper, soul searching, joy in the journey.

If you are looking for a clinical treatise, or a how-to manual on parenting a special needs child, you’re wasting your time. If, on the other hand, you are looking for a glimpse into the everyday life of a special needs family, to see some commonality in our challenges, to see you’re not alone, to see that you’re not crazy, to see understanding in the madness, to see there can be joy in the journey, then this blog might be just right for you; at least I hope so.

So here it is, from this dad’s perspective. No rhythm, no real order, just a mix of experiences, observations, reflections, insights and lessons I have learned over the years. Musing on the serious, the mundane, the ugly, and the cute. I pull no punches when it comes to my weaknesses and shortcomings; all I ask is that you don’t hold it against me.

And this post of his . . . one of my 44 favorites too [ click ]

I've got my blue on today.
I freaking love you Ethan.