My ‘Ah-Ha’ Autism Moment

On my drive to work this morning, I was considering different topics for my February writing challenge topic and I landed on the ‘ah-ha’ autism moment. You know the one? The exact moment you realize that your child really does have autism. And it’s really serious. And you can’t hide it anymore. And your child is different than their peers and siblings.

For me this wasn’t the moment our doctor first mentioned early intervention or even when he was diagnosed with autism. Yes, those moments were hard and stung. But, I knew the doctors and teachers could have been wrong. They didn’t know Cooper. Not really. Not like I knew him. And I also knew my own determination and love. And together we were going to make this okay.

My ah-ha autism moment was actually the day that hurt the most. Our hardest day. The day I couldn’t shield him from the stares or my tears.

My Ah-Ha Moment

I remember the day well. I remember what I was wearing and what Cooper had for breakfast that day. The facts of the day are burned in my memory.

We had just moved our little family from a rural area to a bigger city so Cooper could attend outpatient day treatment and an autism specific program at our local elementary school. It finally felt like it was all falling into place. We had found our people, the right therapies and built our village. And I remember thinking that it seemed like his autism had lessened. We weren’t seeing hardly any behaviors. Dare I say, at the time, it seemed like I had a ‘normal’ toddler. Or whatever PC word I’m allowed to say.

Zero meltdowns, good transitions, improved skills, etc. Still no words but great nonverbal communication.

Now, looking back, I know I was getting cocky. I had let my guard down.

And then cabin fever happened. If any of you live in Minnesota you know how long the winters get. The isolation can be suffocating and we rarely, if ever, went to public places. But, this mama was losing her mind. No one ever told me how long a day could be when it started at 4 am and went until 10 pm. So, I convinced Jamie, and yes, I had to convince him, to go to the Mall of America. I knew it would be loud and crowded and I thought with the right precautions and preparations we could just blend in.

I was wrong, The day ended with me stealing a merry-go-round pony from a sweet little girl and her mom. And crying ugly face tears while every other damn kid was happy.

For the first time in my son’s life I truly saw the autism.

A Simple Trip to a Mall

We originally went to the mall simply to walk around but Cooper was drawn to the theme park in the center of the mall. Noise, people, chaos, colors, lights and rides. This is paradise for any kid that craves sensory input.

I remember being so excited at Cooper’s excitement. See, my little boy didn’t notice much. He rarely engaged. He rarely enjoyed. I remember thinking, this is it. We made it.

Cooper was ecstatic. And the best part…it’s loud in there. All the kids were being maniacs. And we were able to blend right in.

Although, if you looked closely, you would’ve noticed some telltale signs. You’d notice the squealing, flapping and the thrashing. And the over reaction to every sound and movement. You’d notice Cooper couldn’t stop moving or even walk nicely. You’d see me chasing him. You’d see me sweating. The signs were there.

Cooper immediately fell in love with the merry-go-round at the center of the park. He couldn’t even contain his excitement about going on it. And if my kid actually expressed interest in something we were going to go on the merry-go-round.

So, we got in line. Which I knew he couldn’t do. But we tried. I started by letting him stand next to me. My kid was over 40 pounds and we were nearing the point where I couldn’t hold him for long periods of time.

And he thrashed. And went limp. And pushed. And budged. He physically couldn’t wait in a line. Or stop moving. At one point he dropped to the ground and rolled and screamed.

I wanted to give up and run away but he wanted this so badly. He repeatedly pointed to the ride and screamed in joy.

Finally, it was our turn.

This is Autism

We boarded the Merry-Go-Round. As we walked around the ride to find a horse he started to get really, really anxious. And as his anxiety rose…so did mine. By that point I was dragging him. I kept asking him if he wanted to leave and he signed no ferociously. I realized in that moment, there is a thin line between extreme joy, anger and fear. And ultimately, anxiety. For Cooper, they are almost seamless.

I was trapped. We couldn’t leave and we couldn’t stay.

A woman and I reached a non-moving horse at the same time. And I claimed it. She gave me a rotten look. And I mean a really rotten look. I still remember she was holding this beautiful little girl who was smiling and giggling. My son was screaming and kicking. Sweat was dripping down my face. I was beat up. I was exhausted.

And I just smiled at her and plopped my thrashing, squealing, sack of potatoes on the dang horse. Or more like, I tripped and dropped him on the horse. Either way. That happened.

As we waited for the ride to start moving, Cooper alternated between screaming bloody murder and laughing. He wanted to do it so badly. I could tell. But…he didn’t know WHAT to do. He didn’t know HOW to enjoy it. He just knew he should.  It hit me. This is the autism. I see it. This was really happening.

And I looked around and everyone was staring at me. I’m not lying or exaggerating. Everyone was staring at me. And Jamie was holding Sawyer a few feet away and smiling and waving and trying to help. And I freaking lost it. I started sobbing.

Every other kid was smiling. Every other parent was laughing and taking pictures. And I was bear hugging Cooper and sobbing. It was a very surreal moment. Spectator’s faces were a blur. The music was loud. And I was lost.

My heart broke for my kid. My heart broke for me.

I cried the whole ride. Cooper eventually calmed down and loved it.

But, still, could not express it in a typical way. He did a lot of screaming. And then lost his mind when it ended. And his world truly ended when Dad took Sawyer on the ride. Sweet little Sawyer who waited patiently for his turn. I did my best to hold Cooper’s hand while Sawyer rode but again…I am not always strong enough. He melted down and darted and went limp and pulled out every weapon that he had.

I Will Never Forget

We tried to walk around more after that but Cooper was done. The problem is that he didn’t want to actually leave either. And it was the perfect storm of chaos. Elevators were broken, coats wouldn’t be worn, goldfish were thrown, and it was a whole mess of bad.

He screamed the whole way to the car and most of the way home. Jamie and I stared ahead and Sawyer ate popcorn and for 5 seconds (maybe 10) I hated my life. I hated autism.

Every so often Jamie and I would say a few things to each other. “He’s not ready to leave the house.” “It’s not fair to Sawyer.” “God, he’s messed up.” And, “I really thought he was high functioning and this is way to damn hard.”

For years after that day, if you were to ask me what it felt like to have an autistic child, I would describe that moment. It was the feeling of being trapped and utter desperation.

That was my ah-ha moment. And I will never, ever forgot how desperate and helpless I felt in that moment.

Do you remember your ‘ah-ha’ moment? I am currently accepting guest posts on this topic. LEARN MORE now.

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