‘Toddlers, huh?’ ‘You’ll miss these days.’ I smile back. They mean well.’: Mom of autistic son explains ‘this isn’t a tantrum, this is stimming’

“It was an unseasonably cold day in March. The wind was sharp enough it felt like tiny pieces of glass hitting you in the face. They were doing construction on that back on the hospital where you park, and the walk around to the front was a hike. I didn’t have appropriate coats on my kids because I assumed this campus had parking garages like all the others. It didn’t. I strapped my 7-week-old daughter in the Tula, threw my then 20-month-old son in the stroller, and off we went. Both were screaming bloody murder. I was lost. I burst into tears as I asked the nurses to direct me where I needed to be. I was overwhelmed and scared.

His testing had been done 5 weeks prior. He was referred to Cincinnati Children’s by his doctor for an evaluation because he wasn’t meeting expressive/receptive milestones. I was told at his 18-month checkup that he was showing signs of Autism. I was 1-week post-partum.

‘He meets the criteria’.

That’s how his doctor told me. She really probably thought I was dumb, because I kept asking her over and over what that meant. She assured me that because we recognized it so early, he could essentially be ‘therapied out of it.’ What? I probably asked that a thousand times. I don’t know if I wasn’t processing or if I just wasn’t hearing her correctly.

‘She will be good for him’ she motioned towards my newborn. What? I live in a new city, knowing hardly anyone other than my husband, and now I suddenly have an Autistic son and newborn daughter? I looked at my sweet Finley, his precious little face, and cried because of how I thought the world would see him.

So here I am… nearly 2 years later, sitting and wondering when the words will come. How do I tell this story? Shall I be brutally honest of my feelings? Should I be sensitive to others? Should I put this rose-colored lens over the truth? Telling it for what it is, but in a light that seems bright for others? I’ve been wondering and wondering, but the right words don’t seem to come. So, I will tell you what Autism has been for us.

It’s been laying in the middle of Kroger, staring up at the ceiling. Feeling the vibrations of carts going past you. Feeling the cool ground under your body. Seeing the bright cool lights of the open ceilings. Hearing the gentle hum of the motor coming from the freezer box beside you.

Courtesy Allison Lemons

It’s people smiling as they pass you.

‘Toddlers, huh?’

‘You’ll miss these days.’

I smile back. They mean well.

This isn’t a tantrum. This isn’t a game. This is a lifestyle. This is stimming.

It’s talking to your son all day long. Asking him questions that you know you will not get an answer back to. Asking him to do simple tasks for himself that you know you will wind up doing yourself.

It’s him whimpering, growling, whining, or screaming because he wants something, but doesn’t use words to communicate just yet. It’s a constant guessing game that leaves us both frustrated.

It’s therapy appointments that seem like playtime. My son really loves these appointments. It’s really amazing to look back and see how far he has come in such a short while.

It’s watching his younger sister try and interact with him, but mostly getting shut down. She knows his limits now. But sometimes, he will allow her in his space, and it feels like my heart might just burst.

It’s wondering what the future will hold for him. I see the promise of language coming to him. I see the way he is beginning to turn his head to something when I say ‘Look’. I see the way he tells people ‘Hi!’ when he first sees them.

It’s listening to him in his room at night between 2:30-5 a.m. Talking, growling, sometimes shrieking just to hear it.

It’s wanting to be able to ask him about his day, and him tell you all about it. My nearly 2-year-old daughter NEVER stops talking. What I’d give to hear Finley talk to my ear off.

It’s a feeling of guilt. Not for his diagnoses, no. But for him in general. Do I give him enough of my time? Am I engaging him enough? Am I setting him up for a successful life?

It’s being thankful that his doctor didn’t dismiss my concerns about the milestones he was missing because he is a boy. ‘Boys develop cognitively later’ so I’m told. His doctor gave us all the referrals she could to give him all the tools and therapy he needed.

It’s smiling and nodding at those who say, ‘He’ll grow out of it.’

‘He’s not even 4 yet, give it time.’

‘Doctors just throw any diagnoses at children these days.’

Courtesy Allison Lemons

My son isn’t on one single medication to alter who he is. His therapists have given me tools to make his everyday life easier. To help him stim in a productive and healthy way. To help him regulate himself to make it through each day, happy.

I had an idea of what Autism looked like to me when he was diagnosed at 20 months old. I was scared because I wasn’t educated. I was scared because being different in society is either a good thing, or a bad thing. In my mind at the time, this fell under the ‘bad’ category.

I wondered if he would ever look at me and tell me he loved me. I wondered if he would allow us to hold and hug him. I wondered if he would be able to ‘conduct’ himself in public in a way that didn’t draw negative attention.

He has thrown down on us in public. He has fought us in lines. He has ‘melted’ to the point of really big tears. But we allow him to feel all of his feelings regardless of where he is. He has to regulate them himself, and we are there to help him through. All children should be met with compassion during big emotional moments. Their chaos should be met with calmness.

He signs ‘I love you’, and he has even said it a few times. I’ve heard him call my name a couple of times. He is extremely affectionate to those he knows and loves.

Autism is a part of Finley, but it isn’t the only part of Finley.

He loves muffins and fruit snacks. He loves Disney movies so much, he can even recite verbatim lines in certain movies. He loves Toy Story and dinosaurs. He loves his quilt his great great grandmother made. He loves car rides and going to the Children’s Museum.

I would never call Autism a ‘journey’ and Finley my ‘tour guide’. It is what it is. This is part of who he is. My children are loved and treated with the same energy. They each have different needs and ways they need to be loved. They each see the world in a different way.

I can only tell you what Autism is to me. It’s all real for me. You know what they say:

‘If you’ve met a person with Autism, you’ve met one person with Autism.’

And my Finley is the coolest dude out there, even if I am biased.”

Courtesy Allison Lemons

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