Why I’m Congratulating Myself After My Son’s Public Meltdown


I haven’t always been vulnerable. Autism made me this way. It’s not a complaint, just a fact.

A week into his summer vacation, my son, Jack, told me he was bored. Well, he typed to me that he was bored. On November 7, 2012, our world was been turned upside down when our otherwise nonverbal son spelled out on a stencil board, “I am trying” and “I am really smart.”

Jack has progressed to typing on an iPad, and we can have some pretty productive conversations some days. It’s not, however, all rainbows and flowers now that Jack can type. He still has autism. And, quite frankly, it affects him tremendously. It sucks.

He types that he wants to learn on a regular basis. I appreciate his eagerness to learn, but when he typed he was bored, I decided we needed an adventure. Adventures in “autism-land” require a lot of patience and time. I need to be mentally ready for the stares. (We attract a lot of attention just with a service dog. But add in headphones and a kid who weighs 115 pounds and still holds Mom’s hand? People stare.) There’s also always the potential for aggression. This is just a part of Jack’s autism, and it ebbs and flows depending on a long list of items that may or may not be present. I need to be ready to have Jack’s impulsivity take over just when I think everything is going smoothly.

He likes history and battles, so I thought a trip to the Gettysburg Battlefields, only an hour away, was perfect. I enlisted the help of his amazing sisters. They were dead to the world in a teenage slumber when I happily announced, “We are going on an adventure!” Kudos to them — they came with little to no complaining. I was pumped. I could do this!

I was immensely proud of how the girls handled the stares and mumblings from bystanders. The “special” attention we get is a bonus from my perspective — preferred seating, fast service and going to the front of most long lines. For my teenage daughters, however, it just makes us stand out even more.

Our afternoon is going along swimmingly when, just like that, it starts. The aggression. Hair pulling, pinching, grabbing and screaming. Imagine the scene. It doesn’t look right when a kid pulls his mother’s hair. It doesn’t look right when a kid grabs his sister’s face while the other family members quietly try to pry his hands off her. It doesn’t look right when a big boy is having a tantrum equivalent to that of a 4-year-old.

Herein lies the vulnerability. To be in public, I have to admit we are a different family. We are louder than most, and sometimes, our behavior makes people stare with crazed eyes and mouths agape.

But today, I am congratulating myself for doing it. Our day ended a bit earlier than I predicted, but I put us out there, and we all handled it like champs. Autism might suck some days, but my family rocks every day.

This post originally appeared on Hardly Getting By

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

TOPICS
JOIN THE CONVERSATION

Related to Autism Spectrum Disorder

10 Reasons You Should ‘Light It Up Blue’ on World Autism Awareness Day

In 2007, the United Nations declared April 2nd of each year as World Autism Awareness Day. A few years later, a global autism awareness initiative to honor the day was born — Light It Up Blue. Every April 2nd, people all over the world “shine a light” on autism by wearing blue, making their social media profiles [...]

When Someone Told Me I Had the ‘Good Cancer’

Good and cancer shouldn’t be used in the same sentence, period. Yet I heard it multiple times last summer after being told I had cancer. I sat there in disbelief. Not because I had breast cancer (I have been waiting for that shoe to drop for a while), but because there was absolutely nothing good about having it. My experience [...]

How I Learned to Stop Being My Son’s Nurse and Start Being His Mom

I’m a nurse and a mother. For many years, I prided myself in keeping the roles separated. Sure, both are caregivers performing tasks… but as a nurse, I distanced myself emotionally from patients. It was a form of self-preservation, a manner of coping that enabled me to help people. I felt like a superhero by [...]

What My Son’s Misdiagnosis Taught Our Family

The day Ezekiel was born, the neonatologist warned us he probably wouldn’t come out breathing. We were going to see him and say goodbye. But to everyone’s surprise, he took his first breath. His initial diagnosis, based on his brain MRIs before and after he was born, was the severest form of muscular dystrophy. For the [...]