Tuesday, January 18, 2011

Five Things You Probably Shouldn't Say to the Parent of a Kid with Special Needs - January 18, 2011

Five Things You Probably Shouldn't Say to the Parent of a Kid with Special Needs
(or, well, five things I'd rather you not say to me)
(and hey, don't all kids have special needs somehow? because they're KIDS and stuff?)
(there was this camp in my town that was for "exceptional children" and I was always like "hey, I'm exceptional too! I want to go!" and as I grew up I thought, that's an odd euphemism)
(I digress)

1. How did it happen?
In our case, I actually don't know. But does it matter? It happened, and if I'm not volunteering the information, then I don't want to get into it. On the other hand, if I like you, I'll probably tell you the story and then you'll know. But the implication that something OMG HAPPENED irks me - particularly when the impression I get is that you're asking so you can somehow prevent it from happening to your kid and/or feel better that it didn't. At the very least, don't let this be the first thing you ask me.
2. I couldn't do what you do/How do you do it?
I don't know. I just do. This is my kid. How do you deal with a kid who runs away from you in a parking lot? A kid who talks back to you? A kid who suddenly won't stop saying your favorite curse word? You just do, but I have no idea how you do it. If you're a parent, you do what you have to do, no matter what your kid is like. You have good days and bad days and days when you want to hop a plane to a warm place with foofy drinks that doesn't allow children.
3. Is she walking/talking/reading/potty trained/whatevering yet?
If I haven't volunteered this information, please don't ask. It just feels like a stressful or loaded question, particularly if it comes right after I tell you some of the amazing things she now can do. She'll do things in her own time, and I'll be yelling from mountaintops when she does them.
4. Is she mentally challenged?
Yes, someone really asked me this. Yes, I was incredibly offended and found it incredibly rude. It's none of your damn business and WHY DOES IT MATTER TO YOU? Again, in our case, it's not true and in fact my kid is super-duper smart (says her proud mama), but what if she was a bit behind or had some learning disabilities? I'll have either said so or will have left it unsaid. (And sometimes I do make sure to say up front that she's smart and understands just what you're saying because it's important to me that you know this, but that's me and my baggage and my issues.)
5. *silence*
Look, it's OK. Really. If I've brought it up when she's not with me, it's because I'm stating a fact. If I've brought it up when she's with me, it's just to explain why I'm carrying her or why she's using her walker or why she's screaming at you when all you did was say hello. Don't walk away from me, don't stop talking to me, and don't be afraid to ask honest, real questions. I'll answer them, even if the top four things seem like I won't. I'd rather have you ask then not ask. But it breaks my heart into a million pieces when you just walk away. Say "I'm not sure what to say" if that's all you have - I can work with that.

Oh and a bonus item - don't assume you know what her diagnosis is. I've given up on trying to figure out why kid X has a wheelchair and kid Y is nonverbal. It could be a million different things and it is not necessarily the hot diagnosis of the decade, OK?

Wee disclaimer: This is really not a universal type of list, it's all about me me me and some specific incidents that happened. We're all different, I just wanted to get some things off my chest. Thanks!


  1. This is a terrific blog post. I often wonder why people can't seem to use the edit button between their brains and their mouth. Basic etiquette and common courtesy.

    My daughter has mild sensory processing disorder, which is neurological in origin. Here's the textbook definition: “Sensory processing (sometimes called "sensory integration" or SI) is a term that refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses.” In her case, it means she either intensely craves or has intense aversions to certain stimuli.

    It was diagnosed when her pediatrician referred her for PT for her tiptoe walking and difficulty navigating stairs. Everyone thinks the tiptoe walking is cute: "Oh look, I bet she's going to be a ballerina!" I also tiptoe walked as a child(and eventually -mostly - corrected my gait) but I can tell you it's nothing but cute. I still have trouble placing my foot completely flat on hard surfaces, and the years of walking incorrectly caused hip and sacrum issues. My daughter is already presenting with nearly identical issues, as our chiropractor noted.

    As she gets older, other SPD issues are presenting themselves - responses to stimuli completely out of proportion to what would seem "normal." She has difficulty with making transitions and often has trouble settling down if she gets wound up. She's almost 4 and often still needs to be rocked at night in order to relax enough for sleep. (As an infant, she needed near-constant movement in order to sleep, which is vestibular in origin.) She intensely dislikes having her hair brushed and toothbrushing was a huge battle for a long time.

    This may not seem like that big of a deal, but for parents of children with moderate to severe SPD (one of my friends has a child with this, which is how I was clued in to my own child's behavior) it can be very challenging, because the aversion/need issues are more intense. For example, a child who needs more physical stimulus can be a terror on the playground with other kids (bumping, crashing, fighting) or hurt themselves.

    In any case, I do understand why you get tired of explaining things to people you don't know all that well. On some level, it feels judgmental, like we did something "wrong" because our kids have issues that make them somehow different. It's as if they're not seeing the kids themselves, but their behaviors.

    You're doing an awesome job with your daughter. Don't let anyone ever make you feel different. And she is an awesome, perfect little individual just as she is. :)

  2. Can I add one to the list? "Will they outgrow it?" Umm, no, Gabe is not going to outgrow his spina bifida and I'd appreciate it if you'd quit asking.

    People are so incredibly ignorant.

  3. I agree with Chrissi and "Will they outgrow it?" Or "Maybe some exercises will fix him."

    I'm also tired of people just assuming my son is mentally challenged. He also has CP, due to PVL. There'd be nothing wrong with it if he were, but it's an ignorant thing to say. If I hop on Facebook and brag about how he said a sentence, it's not because it's a miracle. I'm just a proud mama. Say "Aww, cute!" and move on.

    Lastly, I don't need someone that doesn't even know what his condition is exactly telling me to put him in a walker (like the kind for infants, not the kind for special needs people)or some other contraption and he'll be all better.

  4. I couldn't agree more. Throw in, "Have you tried _____" and fill in the blank with whatever random and almost always non-scientific quackery that's come up in the news that's supposed to be a miracle cure. Sorry, I'm long past the stage of putting my son through whatever is the latest misery-causing regimen that doesn't do any good in the end. And you know what? It doesn't make me a bad mom!

  5. Thank you for the post. As the mother of two kids on the spectrum and a bipolar toddler i'd like to add "S/he doesn't seem ____ to ME"

    ("well YOU don't seem like a doctor of _____ to me!")

    *grumble grumble*

    oh and I second lemniskate's addition. "Have you tried _____" makes me want to scream. Especially since I'm one of those mothers that I probably DID try it. I'm quite a bit more skeptical now.

  6. One of my favorites always was: "Well, you know Einstein didn't talk until he was 4." (followed by a look signifying that they were CERTAIN that they were reassuring me with a fact I'd never, ever heard before.)