Why I Walk

I am acutely aware that April is Autism Awareness (or Autism Acceptance) Month. I serve on both the corporate sponsorship advisory and public relations committees at my local chapter of Autism Speaks (See how St. Louis did Light It Up Blue!). And before I go any further, let me say this. I understand that there is a lot of divide within the Autism community about the various organizations, who does what, funding for programs vs. funding for research, etc., etc. This isn't meant to start a discussion in favor or against any one in particular. I happen to support Autism Speaks. You may, too, or choose another. Or maybe you aren't involved at all and this post might encourage you to learn more about how you can help. I hope it does.

You see, this was actually originally posted as a note on my Facebook page last September when I was getting ready for the annual Walk Now for Autism and soliciting every friend to walk with me or make a donation to my page or team. I had made a lot of new FB friends over the last couple of years and all they ever knew of me and my now almost 9-year-old son is the place where we are now. He's a star athlete with top grades who is fully integrated into a "normal" classroom. Knowing that I am a single, working mom, many had asked why I devote so much time and energy (as precious as it is) to raising awareness and raising funds for this cause, and I felt I owed a response. This is what I wrote: 

Originally posted on September 28, 2011 at 10:03pm

A lot of people ask why I'm so passionate for Autism Speaks. Like many, I have dear friends with children personally challenged by this disorder on a daily basis. What some of you don't know, is that I was one of them. This is our story.

A_AS_Hat

My son at the St. Louis Walk Now for Autism event 

(Photo credit: Jenna Petroff)

I thought Alex had a healthy spirit and energy for life. From the get go, he's always been a bit quirky. A trait I've encouraged. Normal is overrated. So what if he spends hours spinning in circles? Or that he knew where every single windmill was located, from the minute yard decorations to the giant monstrosity on I-70? Or that he still hadn't uttered a single word by age 2. He's different. So what? I like different. I'm different. But cute quirks soon turned to concern and suddenly we were thrown headfirst into a strange world full of acronyms like ASD, GFCF, and PDD-NOS. Hurled, actually, by a simple word. It was when my dear friend and Parents as Teachers representative put her hand on my shoulder and said, "Jenna. I think we need to get him tested for autism."

There's that word. Autism.

I'm going to fast forward a bit.

 Fast forward through the intensive year of therapists (occupational, physical, developmental, speech/language, behavioral) that came to our home five days a week, and to those who worked with us in school settings for the next three years after that.

Fast forward through the threats and cries it took to get those therapists to see my son because they had taken on too many patients or weren't seeing anyone in our district, despite the fact that no one was seeing kids in our district.

Fast forward through the public fits and outbursts that drew looks of disdain from other parents who thought I must be a horrible mother for not being able to control my child.

Fast forward through the three playgroups I left for those very reasons until I found an amazing group of women who took us in and made us whole. (Thanks, Samantha, Gretchen, Alicia, Trom and the rest of the St. Louis Moms!)

Fast forward through a painful relationship that disintegrated from the stress of dealing with it all, solidifying my belief that I was alone in this fight.

Fast forward through a winding navigation through the state program and public school system to get the services owed to my son. But services he eventually received and that I attribute to everything. (Thanks, Missouri First Steps and SNAP!)

Fast forward through the friends who were there for me as I cried with every setback.

Fast forward through the friends that celebrated every small victory with me, no matter how seemingly insignificant.

Fast foward through the people who were forced to try my cooking after I decided to take Alex off of dairy. (Sorry, guys! Think we've got it down now!)

Fast forward through the frustration of a diagnosis, then a misdiagnosis, then no diagnosis, then..."We don't know what's wrong."

Fast forward through the pediatrician and pediatric neurologist who cared (and care) for my son as their own and who humor his crazy mother. (Thanks, David and David!)

Fast forward through a celebrity, whose book it took to put into words my life, and whose words shone a light of my reality to loved ones who lived far away and were not privy to our every day. (Thanks, Jenny!)

Fast forward through a company that supports its community and the causes that affect them. A company I'm proud to say is mine. (Thanks, Hardee's!)

Fast forward through the friend who inspires me with her courage and whose son melts my heart with his big, blue eyes. (Thanks, Stacey and Luke!)

Fast forward through the friend whose family is also directly affected by this disorder, who introduced me to Walk Now for Autism. Introduced me to an event where I saw hundreds of other kids spinning in circles just like my son and where no one cared. Introduced me to an event that gave me hope and light during a time of great frustration and personal turmoil. Introduced me to an event that would turn me into the advocate that I hope I have become today. (Thanks Jen!)

For four years, since age 2, we lived under the shadow of autism, with varying diagnosis on the spectrum. At age 6, Alex was diagnosed with ADHD, a diagnosis repeatedly confirmed by others, probably much to our neurologist's chagrin. After all we've been through, I needed to make sure this was it. He keeps it in check with medication, but I truly believe that those four years of therapies, diet changes, and behavior modification techniques brought Alex to a point where he was open and receptive and therefore able to have the positive response and coping skills that he has today. He had a special ed consult in his typical classroom for 2 1/2 years but has not needed for the last 2 years. Now in 3rd grade, he has had As and Bs since 1st grade.

So, yes. Six years ago, our world changed with the utterance of one word. Looking back, I often wonder where or who we would be if my Parents as Teachers representative hadn't said, "Jenna. I think we need to get him tested for autism." (Thanks, Kris.)

That's the end of our story. Well, not really. There are still challenges. Alex still has stimming behaviors that linger and often misses certain social cues. I've read articles from several experts who would like to put ADHD on the autism spectrum because of the similarities. Many studies have shown a common occurance between ADHD and autistic symptoms, implying that there might be a genetic link. If that's the case, then my mother has got some whopper stories to tell and my poor kid never stood a chance. Wherever it nets, it's just a label in the end. The bottom line is that for the most part, we're okay.

But there are those families whose stories are being written now. Some are just in the prologue, and some are all the way to chapter nine. These are the stories that also need to be heard. Can you hear them? I can. Autism speaks. And that is why I walk. Because everybody deserves a happy ending.

Please help. You can support Autism Speaks by finding a walk near you, by helping with a fundraiser, by donating team t-shirts, by making a general donation or by supporting a specific walker. Or you can support Families for Early Autism Treatment, National Autism Association or any of the myriad of other organizations that support this cause (here's a great link I found). I don't care what you do. Just do something.

"The opposite of love is not hate, it’s indifference.” ~ Elie Wiesel

In hope,

Jenna and Alex 

 

 

 

 

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