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| Hard-working kid right here. |
And I'll be the first to admit that I have a complete oxymoronic stance when it comes to my son. If I say, "Oh, Junior has special needs" and I get a sympathetic gasp and an, "Omg, that must be so hard," or something, I'm like, "NO IT ISN'T. He's perfect and I'm his mom and loving him is the easiest thing in the world!"
If I say it and instead I get something along the lines of, "Well, at least he isn't ___________" and fill in the blank with whatever childhood illness or disorder you like, "because, you know, it could be worse," I want to get in their faces and ask them how comforting it would be to stand in a doctor's office, be handed stacks of diagnoses and then be told, about your own baby, to buck up, that it could be worse.
See? Prickly.
As Justin gets older and his quirks, as well as his delays, become more of an issue (what seemed passable at 3 and 4 looks stranger at 5 and 6), we find ourselves just smiling and bluntly saying to other parents at activities, "Junior has special needs." We find ourselves explaining to coaches, assistants, librarians - this is our son. He is a great kid. But he has some challenges. Sometimes we talk actual diagnoses. Sometimes we don't. It depends on who the listener is and what the situation warrants.
Most of the time we get a nod, a smile, an okay-thanks-for-letting-us-know and life moves on. But sometimes, we don't.
"But he looks so normal!" is one that I hear a lot.
I'm never sure how to respond to that. Um, thanks, I guess. Yes, he does look normal, doesn't he? Dirty blonde hair, gray eyes, relatively clean...but you know, even if he didn't somehow fit what others view as "normal," it would still be his normal, and my God, what in the hell does that really mean, anyhow? Your face looks normal, okay? And you suck.
Sorry.
What we hear when someone says "But he looks normal!" is "I'm uncomfortable with differences, and I assume you are, as well." We hear someone who almost certainly means well, but doesn't quite know what to say. And that's okay. We have been there, too. But stop. Please. We are okay with different. In fact, we celebrate different. We don't need normal. I promise.
"All kids do that."
When we hear that, we hear a dismissal. I hear someone who probably thinks children with autism can be cured with a good spanking and that ADHD is made-up. I hear someone who thinks that he or she has all the parenting answers. We also hear someone who is fortunate, because they have never had a doctor or specialist look at their child and say, "That's not normal."
Closely related to this is the, "Well, any kid has trouble with that, or thinks that's hard." Yes, I'm aware that a lot of children have difficulties in learning. Let me know if your child is still struggling to identify all his lower case letters after two years. Because what I hear is someone not just dismissing my kid's struggles but someone who is also taking away the magnitude of his achievements. Let him have both. Because he has both.
"They have a diagnosis for everything, don't they."
Yes, I have heard this one. For real. Paired with a dismissive little laugh. And what I heard was the sound of my own head exploding as I walked away to prevent homicide charges. Because what this translates to is, "I don't believe any of it. Because I have not seen the struggles, or cared enough to learn about them, because I don't know your son, I'm going to completely shit all over him and his challenges, tra-la, tra-la." Ugh. There's no fixing that one.
"He's lucky to have you guys as parents."
What we hear is someone complimenting us, and we take it as such, but what we would like everyone to know is that when it comes to measuring luck, our kid got the short end of the stick compared to what we got. I mean, seriously. We feel so fortunate, and I mean truly, truly blessed, to have this kid as our own. Because he is freaking awesome.
"What's wrong with him?"
What we hear is ignorance. And that can be meant both in a negative way, as in, "This ignorant asshole is about to be schooled in what the word 'wrong' really means," or in the true sense, as in, "This person simply doesn't understand that special needs does not mean something is wrong, but that something is different." We're pretty good at telling the two apart, and we answer accordingly.
"He listens better than my kid! You are lucky!"
What we hear: "We have no idea the time and money you have spent in behavioral therapy, the months you spent battling over every little thing. I didn't see you at Walmart that day that every two steps you took you had to tell your son, as he screamed that he hated you, hated himself, as he punched himself and clawed his wrists, to sit on his bottom and give you quiet hands, mouth and feet, over and over, until you were both drenched in sweat and tears, how much work that took, and how you had to do it every time, every day, because the doctors said his very safety relied on him listening to you, I didn't see it, so it didn't happen."
My kid is really well-behaved. That's because we parented him. It does not mean he doesn't have challenges. It means we parented through those challenges. It also doesn't mean that another child with special needs is going to have the same abilities, or that Justin can actually stop repeating "eyeball" over and over at this moment. What it means is that if Justin loses his shit and starts running off, we can say, "On your bottom!" and he drops like a rock, almost by instinct by now, and we can be reasonably certain that he isn't going to get run over by a car. Not parenting him was a luxury we did not have. That was not luck. What you are seeing is survival.
"He's doing really well."
"He's a really neat kid."
"I love your son."
What we hear: That you see him. That you know he has challenges and that he is still managing to thrive. That you see his growth and know that it's a little harder won than it is for most kids, and that you are proud, too. He is a really neat kid, thank you. And I love that he is so loved -- he is worth the loving. All of it, and then some.
