You Don't Have To YELL

Perhaps there are just a lot of people out there to educate about dealing with Special Needs kids, or in this case, Special Needs Moms like me. I get it. Not everyone has grown up around "other"-abled kids, not every one knows what to say and do.

Here is a hint: Act Normal. Period. That's all you have to do.

You don't have to stare, you don't have to point...you don't even have to avert your eyes. If you have a question ask it. But for God's sake don't YELL at me across a crowded hospital waiting room.

When you have as many ongoing medical issues as Austin does you may find yourself spending a lot of time in & out of doctor's waiting rooms. Occasionally, you may meet someone who is genuinely curious about something, maybe it's the feeding tube, maybe it's the BAHA or the Trach. Maybe they are just drawn to his microtia or the Oxygen tank. It varies. We deal with it. I am all about being open, hence the blog.

I often approach other moms and start conversations in the typical mom-to-mom fashion, 'Oh how cute...I love that sweater...How old is he/she?' You know the kind I mean, this is me, acting normal.

So why, oh why, must other people be complete freakin' idiots rude?

Earlier this week we were in the Radiology waiting room at CHLA, which was uncharacteristically FULL! I spotted a little girl, about 3 years old, with Unilateral Microtia. Normally I would go and speak to her parent about her diagnosis or swap stories about the ENTs that sort of stuff. But I could not determine who her parent/caregiver was because it was so crowded and she was playing in the middle of the room. (A side note about hospital waiting rooms: I NEVER release Austin on his own because God only knows what germs lurk on the waiting room toys & books. Germs are bad news for kiddos with Chronic Lung Disease.) I did not see her wearing a BAHA, but I noted her cute pigtails and I went on about my day.

Later, just outside that same waiting room her mom approached me in the hallway to ask about Austin. Aside from the fact that I was heavily into conversation with someone else's parents (RUDE) I quickly answered her questions. 'How old is he? How long has he had his BAHA? Does he know sign language?' I returned to my previous conversation and apologize, because that is the polite thing to do when you leave someone hanging. Then a few minutes later, she is shouting at me over the kids, the TV and the Wii, from across the room. Seriously. She wants to know what kind of BAHA Austin has. It looks different from her daughter's BAHA. And the headband where did we get that? She only has the red one. Um. Ok. Awkward. I raise my voice back over the din. 'He wears a BAHA Intenso, it's a newer model (I guess) and pretty powerful. The headband was one of the choices, thanks we think its fun and we like it too.'



Then she says shouts back. No lie.

'Oh that's nice, well at least he isn't Deaf anymore.'

WHAT?

OMG. Excuse me?

It took all I had to remain composed. I am pretty sure I shot her a look, as did the other 15 or so parents in the waiting room.

So many things were swirling in my head to say.

• You are incredibly RUDE. Can't you see I am in a conversation with someone else?
• Who ARE you?
  
• How about keeping your voice down? How about HIPPA? (Ok, I know HIPPA doesn't apply here, but Geez!!!) Why are you yelling stuff across the room?
• Your child has the same congenital anomaly (for those who are Microtia newbies - it means the absence of ear) - How 'bout a little sensitivity to my son who CAN hear you!
• But mostly it was something like this: What the #%!@*&@ is your problem?!

I mean seriously, what do you say to that? I was not bothered so much by what she said, although I think she should have known better. It was just how she YELLED it out. Does the entire waiting room need to hear this? Do I?

I am pretty sure the look on my face said it all. She clammed up.

Like I said, I am all for educating people about Austin. I would rather he be understood than feared or pitied. But I was seriously at a loss for words. And that my friends is NOT easy!

How would you have handled it?


Thanks for peeking,