My son is disabled. That is an unpopular term. I’m supposed to say my son has special needs or that he’s developmentally delayed. Whenever someone brings this to my attention, I always tell them, “Your child might have special needs, but my son is 8 years old, drools like a sheepdog, beats the shit out of me on occasion, pulls down his pants in the supermarket and pisses on all the cereal. As far as I’m concerned, he’s disabled.
I don’t mind the term “special needs,” but I hate the term “developmentally delayed.” It took me three years of relentless searching to finally get a diagnosis and when I did, that’s what I was told: My son was developmentally delayed.
Do you know what you think as a mother when you hear that? “Oh thank God, thank God he’s not disabled—he’s just delayed! I can fix this! Everything that’s delayed eventually gets where it needs to be. Trains, buses, planes, you name it, yeah! He’s gonna catch up!”
And for me, that was a lie.
Once upon a time, Someone decided that “disabled” was too harsh a term for us young mothers to endure. “We’ll make a new term,” Someone said. “Something that gives the mothers hope and is a little more politically correct. That way, moms don’t leave our office devastated, and we don’t have to have these uncomfortable conversations anymore. It’s a win-win for all of us,” said Someone.
And guess what? Someone was right. It worked. It worked on me. I ate it up like honey on a spoon, and lived on a steady diet of false hope for years. You see, Someone knew that eventually we members of the “Nobody Wants to be a Member of This Club Including Us” Club would eventually figure out for ourselves – that our children were never going to catch up. We’d find our way out of a blissful, intoxicating land called Denial, arrive in an initially devastating place called Resignation.
We would resign ourselves to the notion that our children would never get better, only instead of blaming Someone for this, we would blame ourselves. “After all,” we’d think, “He’s only delayed. If only I’d found the right doctor, if only I had spent more money on private therapy, if only I hadn’t put him in that self-contained classroom.”
I’m done with that. I declared war against Someone, and started fighting with the only weapon I have: the truth. I’m telling the truth about what it’s like to be Kevin’s mother, and I’ve started being honest about every lie I’ve told myself and the lies that people have told me.
And I started with “developmentally delayed.” It may be different for other kids, but my child’s not delayed; he’s disabled. He’s never going to “catch up,” no matter how hard I try or how much money I spend. Not ever.
And here’s the kicker: There’s another place, a place that’s even sweeter than Denial because it’s real. It’s called Acceptance. That’s where I live. It took me a while to get here—there were a lot of roadblocks and bumps in the road—but it was worth the journey.
In the land of Acceptance, you don’t care that your son is never going to catch up and you call him “disabled,” because he is. But even in the land of Acceptance, it will really piss you off when your son pulls down his pants in the grocery store, and pees on the cereal. (It will also piss off the people who work there. Just an FYI.)