To the People Who Assume Parenting a Kid With Autism Is the Hardest Part of My Life

Please don’t assume parenting a kid with autism is the hardest part of my life. He’s not, but other people can be. I can’t imagine a child who does what I ask without asking for a reason and offering a five-point argument in return. I can’t imagine watching my child eat salad. Or anything green. I have no desire to change my son, or those parts of my husband and myself that are reflected in him.

If you have a kid who is any way out of the “ordinary,” then you will likely be handed advice from other people. These people may mean well, but I think they’re jerks.

There are people with a list of what it means to have autism, and what it means to parent a child with autism. This list is generally negative. I know it is; I’ve heard it many times: Violent. Aggressive. Lacking empathy. Needs discipline. Can’t let them get away with anything. Only way they’ll learn.

These people are often strangers, but sometimes they’re our friends and our family, and they whisper to our fear that we are bad parents. Bad parents parenting bad kids, and doing it badly.

And when we hear that list, what do we do?

Sometimes we walk away. We grab our beloved children and we hightail it the hell out of there. We rant. We scream. We hold our children close and whisper, “You are loved.” But how do you shake off the condemnation of others in something that is so close to your heart, especially if your kid totally did push the toddler down the slide?

I have my own list detailing the courage of my 5-year-old son — the way he takes a deep breath, bottom lip thrust out and eyes wide as he walks, haltingly, knowing it’s going to hurt, but not knowing how much and in what particular way — as he moves his body and senses into a new space. This is f*cking bravery. A list detailing his acts of empathy and compassion to those who don’t or choose not to see it: his focus, determination and his delight at making his little sister laugh. This boy who loves so fiercely and quickly and whose heart can be broken so easily.

When I’ve pointed out this list to others, what I’ve found is that my list is not often wanted. Or it’s ignored with a sweep of a hand, an “Of course he does good things, but he does bad things too, right? Bad things?”

Worse still is when I give the list and instead of feeling empowered, I feel dirty. I shouldn’t need my list. It panders to the idea that his existence requires a balance — as long as my list is bigger than theirs, he is valuable. I should not have to defend my child’s existence by weighing up lists. No one should. Then there’s my son.

He listens.

He hears.

He understands.

Is he balancing his worth based on lists? Does he feel like only bits of him are worthwhile? Loveable?

Maybe it’s not other people that are the hardest part. Perhaps it’s the attention I pay them, the parts of them I let into my relationship with my child. I don’t know how to navigate this, to teach my kid that all of him is worthwhile when he’s in a world that presents challenges for him. I can control the world he and I build together.

The world we build will be gentle, and it will explain (repeatedly, probably, and with visuals) and slowly, we will add more people — people who love him and people who understand. These are the people I will listen to, the people who will speak to my heart and the people who, I hope, will eventually become the world for everyone else like him, too.

A version of this post first appeared on Playing With Fireworks.

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