November 19, 2022
This Autism Life
When it comes to parenting a child with a disability, there are parts that we as parents share.
But there are some parts that we don’t talk about.
Respect. Dignity. Maybe because we don’t think to share it. Or because maybe no one will believe us. Or it’s just our norm.
This morning I found myself doing something that me and my husband do daily with our son Cooper. We don’t talk about it anymore, unless there is something of note.
He is 11 years old and has a diagnosis of severe, nonspeaking autism with an intellectual disability and a language impairment.
It’s a mouthful. And honestly, written in greater detail on a piece of paper in a file folder in my desk drawer. Tucked away for the next time we need to fill out an evaluation or make a change to his benefits.
Day-to-day, we just think of him as Cooper. Our son. He is exactly who he is supposed to be. And he is joyful.
Cooper woke up not feeling well. Without words of course it can be challenging to tell why.
So, I did what I do every morning when I dress him.
I sat down and checked his feet. I made sure his toenails were intact. I looked for blisters or owies.
I made my way up his legs, noting marks, looking for bruises. I check his private parts. Up I went. Studying his skin. His belly. His chest. His arms. I looked for chafing. Dry skin. Bumps, Red marks. Swelling.
I checked his hands. His fingernails. Studying to make sure there was no ripping or jagged parts.
I peeked in his ears for drainage. Checked his teeth for any missing. Took note of his tongue and gums.
Checked his lips for cracks or dryness. His nose. His head for bumps. His overall appearance.
I do it all subconsciously. Because he can’t tell me if something hurts. Or if someone hurts him.
I do it so often that I guess I don’t even think it’s odd anymore.
I paused today though. Because the feet I was checking were the same size as mine. They weren’t little anymore.
And I paused. Thinking of this part of our life. 11 years old. The fear that I carry daily. The worry. The heaviness of autism at times.
But then he touched my shoulder. Gently.
As I peeked up at him, his face was beaming. He gasped. He pointed to the sky. He squealed with that joy that he carries and shares.
‘Yes, bud, Santa is coming! I promise.’
Clapping. And a huge hug too.
Another day, another check. His body looks good. And Santa is coming soon.
This autism life.
This piece was written by Kate of Finding Cooper’s Voice and author of Forever Boy.
