Last night, as I staggered back to bed after cleaning my son up from a middle-of-the-night GI tract-related mess (four sheet changes in less than 24 hours – new record!), I checked social media. I’ve slipped a little lately, just scraping off the top of the feed during “desperate” moments (which may or may not include being a passenger in a car, hiding from my kids in the bathroom, or rewarding myself for not looking at it for several days).
I found a perfectly reasonable post written by another special needs mom, commenting on some rather mundane thing her son couldn’t figure out, intellectually, and how frustrating that was. My fingers immediately started to type: “My son can’t speak or wipe his butt, if it makes you feel any better.” Filled with regret, I quickly deleted the words, chastising myself for instinctively shaming her through my back-handed attempt to make her feel better about feeling sad about something that was infinitely less hard than what my son experiences (and yes, that sentence is hard to follow). Because she’s a lovely woman with a sweet son, and it’s all relative and her struggles are real and my son’s more severe disability does not take away from the fact that her family also experiences hardship and…
Okay.
I know all these things are true. But underneath it all, the worst part of me still feels like I “win” in a game that no one has officially opened. Because I’m playing the Disability Olympics – Parent Edition.
In these games, I don’t compete with parents whose families deal with super normal problems like “our public schools teach to the tests and my kids aren’t learning anything”, or “I’m so tired of that dad who coaches his daughter from the sidelines during soccer games”, or…I don’t know. I can’t think of another example because I’ve honestly lost touch with that world. I don’t compete with those parents anymore because they are out of my league.
But I do compete with other disability parents. And it’s truly awful.
“Your child is less disabled than mine, so your airing of grievances on social media about Johnny’s Asperger’s is less valid than mine.”
Or, alternatively…
“My child doesn’t sit in a wheelchair or use a feeding tube, so I better just STFU because wow, am I glad I don’t have to live that life.”
There’s always somebody above me and somebody below me on this Olympic scale of woe. And I am keeping score, ruthlessly.
On the other hand, I’m pretty sure my family exists as a measurement stick of sorts for other families – the “normal” ones who are out of my league. I sat in an exam room once with a doctor who unartfully shifted the conversation from my physical symptoms to a Q&A about the compromises we’ve made in our lives, as a result of autism. Her fascination with our fight against the school system, our complicated child-care arrangements, and the extent to which my son is unable to communicate clearly had nothing to do with my actual reason for being in her office; I was a curiosity that could not be duplicated on her 400 acre farm, or during the fox hunts she goes on each weekend. I got the distinct feeling that I was the entertainment in her otherwise ho-hum day. And damn, was she glad she didn’t have my life.
I have decided that my superpower is to make everyone whose lives are easier than mine feel better about their own would-be complaints, just as I am rightfully knocked off my own feet when my own self-absorption is confronted by a family whose child is medically fragile and/or more disabled than mine.
Knowing I’m an asshole and being able to intellectualize the concept of relative pain, however, doesn’t stop me from having “unhealthy thoughts” about parents whose kids still struggle, but not nearly as much as mine. In fact, I find myself contemplating the unfairness of life less when I measure myself against “normal” families, and more when I’m comparing myself with other autism families. Because the worst part of my soul is jealous that that their autistic child can tell them whether he’s hungry, or tired, or sad, while mine cannot. And therefore my complaints are worth more than theirs.
It’s contemptible, I know. But I’m pretty sure I’m not the only one playing this game. And if you’re a disability parent and you claim to not engage in these comparisons, then you’re either a saint or a liar; I’ll let you and your god decide which.