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 would not 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 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 disapproved. Like that was going to change me, change the situation or 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 my son’s attention.
I got exactly two seconds to breathe when the nurse finally called for us.
I grabbed the paperwork that I never finished filling out in the chaos, and walked to the nurses station.
I hate the stares. The looks of pity. The looks of judgment. I was both grateful and annoyed by the man who said “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 did not follow any of her instructions.
Then we entered the exam room to wait.
Great. More waiting.
I quickly filled out the paperwork. I had 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 was I to question a doctor? If she wasn’t concerned, I wasn’t. He’d be fine.
I left that last appointment reassured
Six months later it all seemed like a distant worry. I was still confident it would all come.
We heard a knock and the new doctor entered the room. After a short introduction we began to chat. Height and weight look good, she said. As she talked she began to flip through the paperwork I had just filled out. She was tallying something up.
She looked concerned.
I didn’t even think twice about the paperwork.
I wanted 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 got to say any of this.
She started going on about the milestone paperwork and kept 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 that this time the 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 began::
“Does he ever point?” Not recently.
“Does he show you things?” umm…Not really maybe a plane sometimes….
“Does he bring you anything?” The remote…. (That sounds great)
The questions went on and on. Some were easy. Some we had to 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 you about Autism?”
Immediately a lump grew in my throat.
I’m not going to lie, like any 21st century mom I had googled things here and there about sleep or and the loss of language; The possibility Autism had come up as a result.
But my son was a cuddly and silly toddler, he did everything else on time so I never even truly considered it. To be honest I wouldn’t let myself.
I sat there as the word echoed in my mind.
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 is not 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 most will never 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.
**You can hear a reading of this piece on the Table For Five No Reservations Podcast,
S5: The Women in Me E4: A Letter to Her