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The Army of Survivors

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by Amy Parham
Autism Asperger’s Digest
| January/February 2013

We are in fact a lot like an army. We are united by the love that we have for our children on the spectrum.

Recently I was asked to be the grand marshal for a walk sponsored by the South Carolina Autism Society. Before the walk began they asked me to say a few words to rally the crowd of parents and their children who had come out that sunny spring morning to support a cause that was dear to their hearts. Since being a contestant on NBC’s Biggest Loser, I have had many opportunities to participate in events like this. I have spoken at American Heart Association luncheons and done bikes races with the American Diabetes Association. I have done 5K races for the American Cancer Society, Goodwill Industries, and various other charities and organizations.

Every time I am asked to be involved in events, I feel honored and blessed. However, after you do anything many times it becomes a little routine. To be completely honest with you, this race was just another thing to mark off my to-do list that day.

But I soon realized that this particular morning was going to be glaringly different. As I stepped up to grab the microphone, I paused a moment and looked around into the eyes of the people in front of me. As my gaze passed over these people, I was struck with an unexpected and almost debilitating wave of emotion. Looking into the faces of these moms and dads, grandmothers and grandfathers, teachers and friends, I saw wounded soldiers staring back at me, war-torn faces of people who had fought against the enemy of autism and came back from battle with the scars from the fight. This hit home hard to me because I know that look all too well. I see it in my own reflection in the mirror every day.

I, too, was suddenly and without warning thrown into that war when my son Rhett was diagnosed with autism at age four. We were told he was just a quiet child and that “his brothers must be doing all the talking for him.” We fought to get the proper diagnosis and agonized in that space where you want to know what’s wrong with your child but are terrified to hear that it’s autism. I mourned silently as relatives and friends made statements like “he will grow out of it” when I knew there was no cure.

So that morning I knew that these people “got it.” With one look in their eyes, I knew we were brothers and sisters that had suffered through delays in getting appointments with developmental pediatricians. We all knew what it was like to learn a whole new secret language with terms such as on the spectrum, high-functioning, and early interventionist. We had memorized all the “T’s”—ABT (applied behavioral therapy), AIT (auditory integration therapy), OT (occupational therapy), and PT (physical therapy).

These people in front of me knew what it felt like to be in the middle of the mall when their child decides to have a meltdown. They knew about the dreaded IEP (individualized education plan) meetings. They had experienced the screaming, the flapping, and the other forms of stimming. We had all mourned the loss of the dreams we had for our children when we realized that they may never graduate from college, get married, or in some cases never tell us they love us. We shared a bond that people who aren’t affected by autism in a deeply personal way would never have to grasp. And like soldiers, we would gather that day and share our “war stories.” All of them were different, but we shared that common thread of familiarity that ties us all together.

This day as I looked at my brothers and sisters there, I also realized that we were the survivors. We had come out of the fight stronger. Every great war has not only stories of tragedy but also those of victory: mountains that were climbed and hills that were taken. I heard the phrase repeated often that day, “We were told he would never [fill in the blank], but he is doing it now!” I know from my own experience because I was told that my son would never be able to read phonetically and now he reads everything!

That day I heard stories of therapies that produced amazing results, diets that had helped behaviors, and teachers that went above and beyond the call of duty. As we shared these notes we shared something bigger. Something that would help us have the strength to fight another day. Through those stories and our mutual experiences, we shared hope. Hope that there may be a way our child could do something that we had believed was impossible. Hope that maybe our child’s future wasn’t so bleak.

That day was a special day. I realized that we are not alone. We are in fact a lot like an army. We are united by the love that we have for our children on the spectrum. That love that inspires us to fight and hope—laugh and imagine big dreams for our children’s futures.

When Rhett was diagnosed it was one of the darkest times in my life. I was devastated and embarrassed by his behaviors. I was angry at God, the doctors, and the people in stores who would stare and whisper. But on this day through my tears, I said a little prayer. I thanked God for allowing me to be Rhett’s mom. I was honored to be a part of this chosen few. This group of soldiers—this army of survivors.

BIO
Amy Parham and her husband Phillip were on Season 6 of NBC’s Biggest Loser when America was introduced firsthand to their family, including their son Rhett who has autism.

 

Copyright © Autism Asperger’s Digest. 2013. All Rights Reserved. Distribution via print is prohibited without written permission of publisher.


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