I’m Tired of Justifying My Son’s Existence


Here’s the thing — I’m tired of society making me justify my son’s existence.

Here are some real life conversations I have encountered within the past few weeks:

Conversation 1: Me, complaining about how picky my typical son is when it comes to eating. My friend, commiserated. “Yeah, that sucks, so frustrating.”

Conversation 2: Me, complaining about my disabled child’s eating habits. My friend? Totally different this time. It was, “But he is so, so sweet. He has such a great smile. You are so lucky to have him.”

See what happens there? I’m sure it has happened to many of you. When you say something negative about your disabled child, you are either reminded by others of all the positives, or you are asked to share the positives.

And that is what sticks in my craw — I’m never asked what the positives are about parenting my typical child. When I am venting with mom friends (or anyone, really) about him, no one ever says, “Well, surely it’s not all bad! There must be some good things!”

Right? Because with typical parenting, you take the good and the bad.

But, with parenting a kid with a disability it’s assumed it’s all bad unless stated otherwise. *YMMV, your mileage may vary.

 

This is what happened in my Facebook group: someone doing a research paper for school wanted to share the challenges of parenting kids with disabilities. Fair enough, and she got lots of responses to work with. (I considered deleting the original thread, only because I feel it’s rude to treat parents of kids with disabilities like some type of specimen or science experiment to be studied…but I let it go since many parents felt comfortable responding).

She got a lot of responses, then a few days later, followed up with: “I had a classmate suggest I add to my paper how children with disabilities make our lives better. I agree I don’t want to just talk about the struggles. I also want to highlight how these kiddos brighten our days.”

On the surface it seems innocent enough, right? And I have no idea if said classmate is also a parent of a child with a disability or not. But the message is there: If you do not tell us there are positives in your life with disability, we will assume it’s all negative. We’re not allowed to talk about the struggles unless we balance it with some positivity, right?

For this specific thread in a group, perhaps I am reading into it too much. But, overall, I stand by my assertion this is something that is often expected of us who have disabled children — you have to remind us of the good things. I’m not asked that of my typical child.

For those of you who have both disabled and non-disabled children, really think about this. Think about how often we are asked to justify our kids’ existence. No one ever says to me about Brian the things they say about Kevin. With Brian, he’s allowed to just be. People assume with parenting him, there are ups and downs, good times and bad…and just roll with it.

With Kevin, notsomuch. You know what? Parenting is hard, disability and regular. Sure, having a disabled child brings with it different and more challenges that other parents do not have. But why do we assume those extra challenges all but eliminate all the good things about parenting? Why must we constantly tell you our bright spots?

The bright spots are there. I see them. Lordy, believe me I see them. I don’t need to be reminded, nor should I have to remind you, that parenting a disabled child is not all bad. I know people are just trying to be nice…but just stop for a moment and ask yourself, “Would I ask them this same question about a different child?”

Kevin’s entire personality isn’t built around his conditions. He is who he is because that’s who he is. My guess is he would be the same sweet kid even if he ate everything I put in front of him and didn’t have multiple seizures a day. His sweet personality doesn’t necessarily make the negatives of his disability (seizures) any more tolerable.* By the same token, Brian has a really sweet personality, too. Meal times are still a nightmare around here due to his picky eating.

Yet I’m never asked how “he makes my life better.” I’m never asked to quantify or justify his existence. I’m never asked to share how Brian “brightens my days” yet with Kevin, it is expected of us. Often.

We do have extra struggles. It is hard. But our kids are just kids, first and foremost. And to assume they bring nothing to the planet besides struggles is a real shame.

I know there is a person in my Facebook group who is likely to feel personally targeted by this post. Note to that parent: Please don’t. This is not just about you, and has been a long time coming. Your question was merely the proverbial straw on the camel’s back.

A version of this post appeared on A Day In Our Shoes

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