The Woman who said, “I’ve been there”

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I was in line at the doctor’s office not very long ago trying to juggle my son James with one hand and my purse and clipboard of endless insurance and medical forms in the other.

And that’s when I saw her standing in the line beside me wearing a pink sweatshirt, leggings, and her hair pulled back in a ponytail. Like me, she had her hands full with her toddler, stroller, and loaded diaper bag.

We made eye contact seconds before my little Houdini wiggled himself out of my arms and took off.

Without hesitation, she stepped out of line and gently caught him by the hand just as my purse and the clipboard fell to the ground. She simply smiled at him and in the most inviting voice said, “Do you see the baby?”

She magically bought me enough time to gather my belongings and quickly hand the paperwork to the nurse.

As I rushed over to say, “Thank you,” she smiled and said, “It’s OK. I’ve been there.”

There was no judgement. No look of pity. No head shake or raised eyebrow.

We smiled again as I scooped up my son and headed down the long hallway to our appointment.

Moments when our kids do something unpredictable or slightly embarrassing are not uncommon for parents. Kids beg for candy in the grocery store or boldly refuse to eat their vegetables in front of company.

We’ve all been there, right?

But when you have a child with Autism Spectrum Disorder these moments can be very different because the challenges – communication, social interaction, repetitive behaviors, meltdowns – can often be misinterpreted as defiance or bad behavior.

And in addition to managing the needs of our child in uncomfortable situations, we also encounter inappropriate comments, unsolicited advice, or awkward stares from bystanders.

I once chased down a man at the trampoline park after he accidentally brushed against my son’s arm.

This was during a phase when James was experiencing quite a bit of repetitive behaviors and if something or someone inadvertently touched him then he had to touch it again. Just imagine the man’s face when I asked him if my son could touch his elbow. Of course I explained the circumstances and apologized for any intrusion.

Thankfully, he graciously allowed our request and we were able to resume our afternoon without a major incident.

That’s not always how it goes. There are many times when we have to say no and we deal with the behaviors that follow. That often means taking a break somewhere quiet or heading home earlier than expected.

I’ve left groceries in buggies, multiple birthday parties before cake, and I can’t tell you how many family gatherings my husband and I spent tagging out so one of us could visit while the other played outside with James.

And while Autism has brought its challenges, it’s also brought tremendous beauty to our lives.

James is super smart, funny, and devilishly charming. He loves people like no one I’ve ever encountered.

He enjoys making new friends and calling them by name. He gives the best hugs and has the most infectious laugh.

With the help of our amazing support team of therapists and teachers, he’s thriving and learning more each day. James has taught me more about life than I ever expected and has opened my eyes to parts of the world – and people – that I otherwise would have missed.

But if you catch us in the midst of a meltdown, you won’t see all of that. Instead you may see a tall, almost 7 year old boy who bolts out of line at a doctor’s appointment because he’s scared –or cries when he gets a haircut because he can’t stand the feeling of hair on his neck.

And when you see this happening, you may stare, question my parenting, or even offer advice. But I hope after reading this you will hold back and remember there may be more to the situation.

Maybe you don’t know what to say or do. And that’s okay.

All we need is a friendly face of someone who is willing to understand – or even give a hand and say, “I’ve been there.”

Written by, Amanda Ledbetter

Amanda Ledbetter lives in Spartanburg, South Carolina with her husband, Jay, and two children, Ellie and James. James was diagnosed with autism at age two and thriving with the help and support of his wonderful therapists and teachers.

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Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.

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Kate Swenson

Kate Swenson lives in Minnesota with her husband Jamie, and four children, Cooper, Sawyer, Harbor and Wynnie. Kate launched Finding Cooper's Voice from her couch while her now 11-year-old son Cooper was being diagnosed with autism. Back then it was a place to write. Today it is a living, thriving community of people who want to not only advocate for autism, but also make the world a better place for individuals with disabilities and their families. Her first book, Forever Boy, will be released, April 5, 2022.

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