The First Time I Heard The Word

By Jaime Ramos

Hot, sweaty, and out of breath in the middle of winter I sat in a full doctor’s office lobby. Due to construction, the area we were in held patients waiting for the pediatricians as well as those waiting for gynecologists.

It was packed.

My newly two-year-old son wouldn't hold still while we waited. I chased him around the room and brought him back to his chair over and over. The waiting area wasn’t enclosed and there were stairs nearby. Not ideal.

Names were being called one by one and each time my son would loudly repeat the name the nurse had just beckoned. This was something I did not expect and something that drew all eyes. Every single time. He didn’t giggle or smile after each one. He just echoed her.

I could feel as one older woman waiting a few chairs away watched us with a glare.

I felt her thoughts and her judgment. She wanted me to look at her. She wanted me to see that she didn’t approve. Like that’s going to change me, change the situation, change him.

Finally my husband arrived to help. I was so grateful, but somewhat ashamed.

Why couldn't I manage a little toddler on my own? Why did I need my husband to take time off of work to help me? I feel like a failure and also annoyed that he was late.

As he took over I crawled around and gathered all the toys, books and snacks scattered around our chairs, each thrown to the ground as they failed to do their job of occupying him.

I get exactly two seconds to breathe when the nurse finally calls out my son's name.

I grab the paperwork that I never finished filling out in the chaos, and walk to the nurses station.

I hate the stares. The looks of pity. The looks of judgment. I’m both grateful and annoyed by the man who says “you’ve got your arms full there don't cha?” on the way “Yep” I replied with a half smile and probably flared nostrils.

My husband helped the nurse try to get my son's weight and height. I apologized as the toddler doesn’t follow any of her instructions.

Then we enter the exam room to wait.

Great. More waiting.

I quickly fill out the paperwork. I have filled out milestone paperwork at every doctor’s visit for my son since his birth.

This paper looked a little different but I didn’t think much about it, because this was a new doctor for us.

You see a doctor a lot in those first two years. Ten times barring any illness. Only at the last appointment, 18 months, did I have any concerns. His speech had stopped progressing. He barely hit the minimum word count and was often quiet, but the doctor just said; “That happens sometimes especially with boys” “I’m not concerned.” “He has great gross motor skills.”

Who am I to question a doctor? If she’s not concerned, I'm not. He’ll be fine.

I left that last appointment reassured

It’s only been six months since then but it all seems like distant worries. I'm still confident it will all come.

We hear a knock and the new doctor enters the room. After a short introduction we began to chat. Height and weight look good, she says. As she talks she begins to flip through the paperwork I just filled out. She’s tallying something up.

She looks concerned.

I didn’t even think twice about the paperwork.

I want to talk about sleep. Shouldn’t a two year old be sleeping all night? He never settles then he wakes up in the middle of the night or really early wide awake. If he’d just sleep I think he’d be less temperamental.

I never get to say any of this.

She starts going on about the milestone paperwork and keeps saying “do you guys have any concerns about his development?”

“Ahh…”

His old doctor didn’t; he rolled, sat, crawled, walked, and kinda talked all on time.

Again, but “do you have any concerns?”

All I could think was why aren’t you asking about naps, eating, sleeping. All the stuff we’d usually cover.

I hadn’t realized this form was a test. A test we did not pass.

She called in her nurse to help start a new test on the computer.

While the nurse logged into the computer the doctor again asked “do you have any developmental concerns?’’ I was growing frustrated and defensive. I felt rushed and pushed.

I raised my eyebrows and said “you keep asking, do you have any?”

The test begins:

“Does he ever point?” He used to.

“Does he show you things?” umm...Not really maybe a plane sometimes….

“Does he bring you anything?” The remote…. (That sounds great…)

The questions go on and on. Some are easy. Some we have to really think about. Most of them my husband and I didn’t even know that we should have been watching for.

That was the first time we heard it. The word. “Has anyone ever talked to about Autism”

There’s Immediately a lump in my throat.

I’m not going to lie like any 21st century mom. I've googled things here and there about sleep or and the loss of language; The possibility Autism does come up as a result.

But my son is cuddly and silly, he did everything else on time so I never even really considered it.

I sat there as the word echoed in my mind.

Autism

A-u-t-i-s-m

One word people often use to define an entire human being.

I shut down. I was defensive and just wanted to get out of the room. A referral was given and we left.

The whole way home I was Irked and my mind raced; “He’s just behind.” “He’s just shy.” “He’s a boy.” “Everyone develops differently.”

Over the next couple years we battle that one word.

The referral took us to an observation that resulted in a “just a delay.”

Come back in a year if he’s still behind.

We went back.

As I write this years later I realize my relationship with the word has changed, but is always extremely complicated.

My son isn’t that one word. He is so much more.

I battle with the assumption people make from it. I’m also grateful for the resources and explanations it beholds.

Some days I'm angry at it because I blame it.

I blame it for taking away what I thought was going to be.

Every so often late in the night I loathe it. My son lives in an overwhelming world where anxiety often takes over. A world where few people accept him and understand him and others never will take the time to.

Though, a lot of the time I can find beauty in it. It has changed the way I see the world. It’s part of the most beautiful boy I know. When he feels happiness and joy, It's greater than I will ever know.

When I first heard autism that day in the doctor's office I thought I knew what it was. I feared it in a way but also did not know what it meant, but now I know so much more.

My son is autistic… and silly...and sweet...and determined… and a million things.

And autism is just a word.

Jaime Ramos, is a wife and mom from Colorado. She's married to her best friend, Isaac, and they have two kids, Amelie and Jesse. Jesse is seven and autistic. She mainly writes about motherhood and her journey of having an autistic son. Jaime is a blogger at Jaime Ramos Writes and co-host on the Table for Five, No Reservations Podcast. She wants to spread the word that spreading love and awareness is key to acceptance. Facebook: www.facebook.com/JaimeRamosWrites IG: www.instagram.com/jaimeramoswrites/ Blog: jaimeramoswrites.com Podcast: https://anchor.fm/tableforfive