"What's Wrong with your Baby?"

Seriously, I hear this one ALL. THE. TIME.  Usually from small kids (particularly around age 5-7, but as young as two and sometimes from a kid well into the teens).  If you have a child with a visible disability, this question (or a close variant) will pop out of random strangers' mouths on a steady basis.

This is a HIGHLY sensitive subject for parents of children with visible disabilities, and I can't begin to guess how many "rant" posts I've read about all of the snarky things parents wish they could say (or, frankly, do say) to the ignorant child who let those words escape their lips.

Hearing those words from strangers is very painful, I won't deny it, but honestly...I welcome it.

I'm so GLAD every time a random child says that "rude" sentence, and I'll tell you why!

First off, I need to clarify something that is crucial to this situation: Nate is the only one of my children with an immediately visible disability, so in our world, this question is always about him.  And Nate does not show any indication that he understands spoken language.  So, the number one problem with a question/comment like "What's wrong with your baby?" is not (apparently) a problem for us.  Most parents hate that sentence because usually their child does hear and understand what is being asked, and it hurts his/her feelings.  No one wants to see their child hurt, so obviously, this would put most parents into "Mama Bear" mode.

I however, do not feel the need to protect my son's feelings from a verbal statement, since he does not understand what is happening.  Early on in Nate's life, I realized that Nate's indifference to the conversations sparked by his appearance makes him a perfect ambassador for the other children who do cringe at questions like these.  So, I made a conscious decision to invite children to meet Nate, make all of the innocent gaffs and faux pas with Nate and myself, and wrap their minds around the fact that little kids really do come in all forms, so that the next time they meet a child who looks somewhat like Nate, they will be able to approach that child with at least some level of understanding (and hopefully acceptance).

Another very important point: No child has ever walked out the front door with the determination to find some stranger who looks different, then purposely insult them.  I'm serious.  I've worked with a lot of kids, teaching them, babysitting them, or just meeting them, and while some of them have unintentionally said some pretty rude stuff, I can promise you that none of these kids actually felt the need to walk up to a kid like Nate and insult him.  It really helps to keep this fact at the front of my mind each time some random kid stops, and stares, and creeps closer, and then opens his mouth...

Here's the thing we all need to accept: there is absolutely no point in pretending that children will not notice a wheelchair, or oxygen tubing, or scoliosis-induced posture, or "dysmorphic facial features".  It's all fine and dandy to teach kids to "look beyond the disability and see the child inside" but children can't do that until after they've addressed the obvious differences and then spent adequate time around a child like mine to see the more subtle things like common interests or sweet personalities.

But if our society refuses to talk about these things, kids will still be confused.  Kids would often do better to ask a parent in a private place (like in the car after leaving the grocery store), but of course they won't know to do that without making mistakes first.  And unfortunately, our society has told us that it's rude to stare, and rude to ask, so rude in fact that parents are terrified that their kid will screw up, and so unfortunately many parents overreact and unintentionally teach their kids to ignore children like Nate.  Or worse still, fear him.  Let me tell you how this happens:

True story.  The one and only time I've had a "bad" experience with a child noticing Nate.  We were in a movie theater, waiting for the house lights to dim before the show.  Nate was parked in the wheelchair spot and we were sitting next to him.  A little kid passed, holding his mom's hand, and noticed Nate.  He slowed down, and stared, and started to ask, "What's wrong..." when the mom glanced back, saw the situation, and YANKED her son's arm while snapping, "Don't stare, it's rude!!"  Her son immediately sped up and hustled away with his mom to the far side of the theater.  My first thought was, "Wow, good job, lady.  I know you were embarrassed, and tried to do the right thing, but unfortunately, now your little boy is scared of my son.  What is he, four years old?  In his mind, he associates my son with punishment and shame."

So, since Nate and I get this scenario a lot, I try to be quick to jump in, reassure the parent, and invite the child to come learn before I lose the opportunity to teach a better approach.  It usually works pretty well, and it looks something like this:

Kid sees Nate, stops, and stares.  Kid glances up at me, confused.  I smile and try to get down on the kid's level if I can.  This shows Kid's Parent that I'm totally open with this turning into a conversation.

Kid: "What's wrong with your baby?"

Kid's Parent, hurriedly: "Oh, no, there's nothing wrong.."

Me, to Kid's Parent: "It's okay, don't worry."  then, to Kid:  "Do you want to meet Nate?"

(Some kids shake their head "no" and back off.  That's okay- they're still processing information.  At least they know that nothing bad happened when they approached us.  Usually the parent might ask a question or two.  Other kids will be thrilled to ask as many questions as they want, and start bombarding me with questions.  But most kids will hesitantly indicate "maybe" and then follow up with..)

Kid:  "What happened to him?"

Me:  "Well, when he was born, his body had some problems.  So his body looks different, and moves different, and doesn't work very well.  That's why he has this wheelchair.  It's pretty cool.  He gets to go for a ride, and it can do cool stuff like tilt back when he gets sleepy, see?  And it has this canopy to block the light when it's too bright, or the wind when it's too windy."

If the kid hasn't lost interest or asked more questions, I'll continue with "the Nate tour."

Me:"This is a tube that helps him breathe.  Have you ever seen Grandmas or Grandpas with one of 

these? What it does is take air from this tank, and it pushes air all along the tube, and blows out in his nose, like this: (and I blow air up toward my nose)  That helps him breathe.  Nate has other tubes, too.  See this one?  It starts here, with a bag full of milk.  It's a special food, just for him.  It goes down to this machine, then up the tube, and around to his belly.  See here?  His food goes straight to his belly, instead of his mouth.  That way, he doesn't have to eat gross veggies or anything.  And if he has to take an icky medicine, it goes right in here, so he doesn't even have to taste it.  Kinda nice, huh?"

Usually little kids are a bit lost by this point, but bigger kids are loving it, and asking lots of follow up questions.  As soon as I notice a kid looking overwhelmed, I jump to the end.

Me:"But even though Nate's body wasn't made right, he's still a kid, like you.  Did you know that Nate is actually eight years old?  His birthday is Christmas Eve.  He can't talk to you, but he can hear you, and he loves to hear new people talk to him.  Especially kids.  Sometimes, when you talk to him a lot, he starts to giggle.  He loves silly sounds, like when someone blows their nose.  Or when big dogs bark.  Or when we make animal noises.  Would you like to try?  He might be sleeping, but he just might smile..."

Hopefully, by this point, the Kid's Parent is involved and talking directly to Nate, too.  I always cut it short when the Kid or his parent loses interest, but if they want to stop and chat and ask questions, I try my best to keep it going.  

I avoid correcting people when they phrase things badly.  I just model better terminology or phrasing in my replies.  They almost always switch to my words or way of stating things by the end of the conversation.  Once people see that I'm not put off by their inexperience, they are often very eager to learn as much as they can and then apply it the next time they meet a kiddo that reminds them of Nate.  Even if that next kiddo is fully mentally engaged in the world around them, and these people assume he/she is disengaged like Nate, at least they will be more willing to approach that new kiddo  and his parent with a question like, "Can my child meet your son?" or, "Hey, do you like silly noises?" rather than, "What's wrong with your baby?"

See the difference that Nate the Ambassador can make?

Now, to other parents with children with visible disabilities:

If you have an infant or toddler, the question "What's wrong with your baby?" is hard enough.  But be prepared: your child will be mis-identified as a "baby" by small children for a very long time, especially if your child is in a wheelchair.  This is because the wheelchair could be mistaken for a stroller (especially by a preschooler).  Eventually, though, the question morphs to, "What's wrong with your kid?"   But I digress.

Obviously, not everyone can do what Nate and I do.  It is sometimes painful.  It is intimidating.  It takes practice, and a lot of charity.  But, no matter what, please come up with a standard response to this unavoidable question.  Having a prepared reply helps deflect the sting.  If you can, please make it a kind response.  You are talking to a child, after all, and this child will definitely remember and learn from your reply.  Fume later, in your car or at home.  Remember that your response will determine whether this random kid will forever avoid disabled people out of fear of the backlash, or instead perhaps down the road this kid will feel safer to engage more people in conversation and eventually learn that we are all, really, just people, no matter how we look.