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To the Mom Who Told Me ‘Autism Can't Affect You That Much’

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You were pushing your twin toddlers side by side in the swings next to my son, Cruz, and me. We got around to the usual small talk most moms share at the playground or park. As you began to lift your second twin from the swing when it was time to go home, he began to scream. It wasn’t just a “I’m not ready to go yet” cry; it was a high-pitched, blood-curdling screech! My son instantly covered his ears and started rocking, kicking and smacking the sides of his head. Automatic sensory overload.

I immediately scooped him up for comfort, and you apologized and insisted your son do the same, which made him scream even louder. I smiled and explained it wasn’t anything to apologize for, and that my son has autism and sensory processing disorder. And then your whole entire demeanor changed.

As I began to tell you about my son’s diagnosis and why he reacted the way he did, you swiftly straightened up while placing a boy on each hip. You scowled at my son and me and with no hesitation in your voice said, “I have twins! Get over it! Autism can’t affect you that much!” Then you rolled your eyes, whipped around and stormed off.

As an autism spectrum disorder advocate, raising awareness is my duty. My son was diagnosed with autism at 25 months old in September 2014. I’ve never seen his diagnosis as a disability; I see it as having a different ability. But just because I’m proactive and hell-bent on advocacy, don’t think for one minute autism doesn’t affect me that much.

When my child can’t express what he needs and I’m powerless to understand, it can break my heart like no love I have ever known. Countless tests, evaluations, blood work, CT scans and doctor appointments can be challenging, especially when I haven’t slept in days because I’ve been awake researching everything to get a grasp on my new reality.

Then there are times when I can’t go to the grocery store with my son due to sensory overload. The bright fluorescent lighting, deafening crash of metal carts and thumping of feet would be too much for him.

Sarah Elliott.3-001

Yes, it can be challenging and emotionally draining at times. And yes, I can second-guess myself as a parent and feel defeated by self-doubt. But when my little warrior makes eye contact, smiles, holds my hand, hugs me, says one little word (signed or verbal), I realize I’m so much stronger than my weakest day.

I believe we are the voices of our nonverbal children. We are the gentle comfort in their world that can spin with chaos. We are their North Star, guiding them home when they feel lost and alone.

My son is my hero. He has taught me more about life and love than I could have ever imagined. I pray I can return the favor someday.

I’m my son’s biggest fan and advocate. I’ve watched him fight for every single milestone. I’ve challenged doctors who were too busy to see the signs in front of us. I’ve had tense discussions with loved ones who are comfortable in denial and can’t accept that this is simply a part of who my son is.

I’ve found one of the most challenging aspects of an autism diagnosis is not the diagnosis itself; it’s the outsiders I need to enlighten. And through it all, I wouldn’t change one thing about my little warrior, even if it were possible. He’s a puzzle piece of beautiful perfection, gifted to me by serendipity.

So in closing, though I do have two children, you’re right — I have no idea what it’s like having twins. I have nothing but respect for your day to day struggle and cannot imagine what your life is like, and how the impact must affect you. However, do not mistake my kindness for weakness. You have know idea how autism affects me.

Follow this journey on Advocate Momma.

Originally published: October 15, 2015
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