My Son is Not Less

pexels-photo-131777

The hardest parts of autism, of special needs, of disability, of parenting a child with significant and complex needs…Well, they aren’t the parts you would think.

The practical parts of parenting a child like ours, the trials and tribulations, well, you could write a book.

He’s a wheelchair user. He requires all of his cares to be done by an adult, and when we go for dinner you best be sure to move all of the crockery out of arms reach, unless you fancy being speared by a fork or having your lovely glass of rose redecorating the front room walls.

All of that though, pales into insignificance when you remember the fear. The fear of the future and of what is yet to come.

That, for me, is the hardest part of autism.

We recently took a trip to Disneyland. Whilst there, doing my sons cares on a dirty floor as Disney has no changing places facility, the toilet flooded.

I get it folks, plumbing problems happen…that wasn’t the hardest part.

We changed our clothes, washed and dusted ourselves off., our days are often filled with bodily fluids and medication and wet clothes from leaks in his pads.

It’s nothing new and we crack on, you do what you’ve got to do.

We popped to Guest Services to let them know they’d sprung a leak. The man looked at me, he looked at my son rocking in his wheelchair and he shrugged.

Leaks happen, he said, what can he do?

He looked at my child and me, covered in dirty water, and he shrugged. He didn’t see the issue.

This is the part of autism visiting us that scares me.

I doubt the CEO of Disney would lay on the floor and allow toilet water to flood over him. I doubt he would expect his wife or mother to kneel on a floor that was covered with bacteria, that hundred of people had already traipsed over that day. Because it’s not okay.

So, why would anyone think it was OK for my son?

This is the hard part of autism.

He’s not less. He’s not worth less and he doesn’t deserve less.

He deserves dignity and respect, safety and tolerance. He deserves someone to be horrified that the above happened, to another human being and that it was allowed to occur to begin with, because a billion dollar company couldn’t provide an appropriate changing facility.

Little man won’t be forever little. He will get bigger, and his world will get smaller. It will shrink and ours along with it. This is the hard part of autism.

Later in the same trip, my son was eating his meal. He’s a messy eater guys and he’s loud. Nonverbal does not mean silent!

He was tucking in and he wasn’t shy about it either. As he was eating a little lad passed us by.

He stopped and stared at my son.

Not a wee cursory glance, not a little look of curiosity. He stood, gobsmacked and stared at my son for what felt like hours.

Me and my husband exchanged glances. We looked at each other and back at him.

I should add now that he was a child. He was curious and I don’t for one second berate him for staring, but for a second it highlighted how people that aren’t us see my boy.

This is the hardest bit of autism. What will happen to my son when we are gone, will anyone see the amazing, clever, loving boy that we see or will they just see a man, rocking and dribbling.

Will they look at him with love or just with confusion or worse, apprehension and fear.

My son isn’t less.

He’s not the hardest part of autism, he’s a pleasure.

The hardest part of autism is the idea that someone else might not see what we see.

That they might judge him, harm him, chastise him. That he will always be vulnerable.

That one day he will walk this world without his mumma there to walk along side him.

That’s the hardest part.

Written by, An Anonymous Mother

Finding Cooper’s Voice accepts guest posts from writers that choose to stay anonymous. I do this because so many of these topics are hard to talk about. The writers are worried about being shamed. They are worried about being judged. As a writer and mother I totally get it. But I also understand the importance of telling our stories. And this will ALWAYS be a safe place to do it.

Interested in writing for Finding Cooper’s Voice? LEARN MORE

Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.

Avatar photo

Kate Swenson

Kate Swenson lives in Minnesota with her husband Jamie, and four children, Cooper, Sawyer, Harbor and Wynnie. Kate launched Finding Cooper's Voice from her couch while her now 11-year-old son Cooper was being diagnosed with autism. Back then it was a place to write. Today it is a living, thriving community of people who want to not only advocate for autism, but also make the world a better place for individuals with disabilities and their families. Her first book, Forever Boy, will be released, April 5, 2022.

Share this post: