I started the day with the idea that I wanted to write a post this morning. I had an idea, but it got lost somewhere in the shuffle of the day.
Today has included a real meltdown.
It was time to come in for dinner, and Ethan fell apart. Screaming as high and loud as he could. Somehow he willed all his bones to disappear. He grabbed and pushed begging to go to his room.
That’s his safe place. That’s the place he goes to calm down- usually after stripping off his clothes. He was screaming and crying. I went to his room to make his bed.
He’s four, but he still sleeps in a pull-up. He stays dry most nights, but last night he soaked through his pull-up and pjs. He was screaming at his door while he was supposed to be going potty. He had to calm down enough to be able to go to his room.
I made his bed, put on his new dinosaur pjs, and he calmed. He asked to go eat more. I was so proud of him. That was a terrible meltdown, but he eventually self-regulated. In the middle of that chaos, it feels like it will never end. It ends.
It ends sooner and sooner all the time, and I see the progress. I feel overwhelmed in those moments, but I mostly feel heartbroken. It’s crushing to see everything hit him so hard and fast that he can’t adjust. It makes me sad, but it also makes me remember who we are all becoming.
I have not always been patient. I have not always been flexible. I’m actually very structured and rigid in nature. That person could never have been an autism mom. Having a child on spectrum has required me to rise up and become who he needs. He needs someone who can be firm, but can also really see him in the hard moments.
I have to see Ethan, not the behaviors. I have to recognize the overload he is feeling and responding to. I have to be his calm in the storm. That’s who he needs, and that’s what I fight for every day. I do better some days than others, but I’ll never give up the fight.
Moments come that remind me we are moving in the right direction all the time. Last night while I was tucking him in I said, “Ethan, momma loves you all the time.” He said, “No matter what.” That is usually what I say to him, but hearing him echo an understanding I’ve hoped he would have made my heart stop. In that moment, I knew he knew that I’d love him all the time. On the easiest days, I love him no matter what. On the hardest days, I love him no matter what.
There are legions of autism moms around the globe, and I want you to see us. I want you to see us when we are in the grocery store during a meltdown. I want you to understand why we can’t be inside while you sing Happy Birthday at a party. I want you to know that when the switch flips, we are powerless. I want you to see the hurt in us as our child struggles. I want you to see their humanity and ours.
We are trying to be who they need. We are trying to lead them into the world, and we’ll get there with a lighter load if all you give us is kindness and understanding.
Please don’t pretend we aren’t there or be disgusted with behavior you “would never allow.” Please understand that in the battle to make progress day in and day out, just braving the grocery store may be a win for us.
I hope that this post gives you new insights into what days and moments are like outside your home. If these moments and heart aches are ones you know, I want you to know you are seen and never alone.
I wore this blue shirt in honor of my Ethan on Autism Awareness Day. I couldn’t have picked a better one. Today I hope and pray for a world full of kind humans for all of us.
Be that for someone. We all need more and more kind humans in our lives and everywhere we go.