May 07, 2013

My Tattoo


Don't have one.  Yet.  I am seriously considering getting one.  I have been thinking about it for a while.  What would it read and where would I put it, you wonder?

"He has Special Needs" - inked directly across my forehead.

There has to be an ink shop that has already done a couple of these because I am surely not the only mother of a special needs child that has wanted this stamp.

A weekend a few weeks ago was particularly challenging. (actually, who am I kidding, every weekend is challenging)  We were on a road trip and Bridger had been screaming quite a bit in the car.  Cars are challenging to him.  With his vision impairment he can't watch out the window, so I guess I would feel a bit of angst if I had to stare at my lap or the seat in front of me for a long drive.  It is especially fun when he gets in his "road rage" and reaches forward and yanks my hair from behind as I am driving. 

We proceeded to go into an activity center where Bridger was told he could not participate.  My previous thought that we were going to be having some family fun was sunk.  We left and went to Walmart for some groceries to continue in our road trip.  Alan was holding Bridger upright in the cart and I had dashed down the aisle for an item.  Bridger let out a shriek, to which the lady next to me whirled around to stare at him and say in her very loud voice for all to hear, "What is WRONG with him?!?"  Not knowing that his mother was standing right next to her I looked her dead on and said in my most even tone I could muster, "HE has Special Needs."  She let out a little "ohhh" and Alan and I pushed our shrieker and other little ones to the checkout and left the store.  

My retort that I was saying back to her in my mind was "nothing is wrong with him.  What is wrong with you?!  What is wrong with you that you have zero tolerance for anything that is outside of your realm of acceptable and normal that is so atrocious to you that you feel you have no choice but to comment?" *sigh* of course I would never say that.  But I think it a lot as the situation described above is something that happens nearly every day.

Our mistake was that we dare put him in a cart.  I sometimes am grateful for his wheelchair because it makes him look. . . you know, 'special'.  It serves as his 'tattoo' and hopefully is accompanied by some piece of a benefit of the doubt when others may be quick to judge, criticize or comment.  My friend who has her share of similar situations with her son that has autism has a 'tattoo' on her van in the form of a bumper sticker that reads "Autism Speaks".  When she is dragging an awkwardly heavy 12 year old to her car in the middle of a tantrum amidst the stares and shock of spectators, she is grateful for her tattoo - that perhaps allows judgment and criticism to be passed over.

People don't see how many medically complex children there are out there because there are very few places to go that are worth the hassle and extraordinary effort it takes to simply get out of the house.  But when we do, we just want to blend and be normal.

Just the other day I took my kids to a farm and a woman was walking towards us from the opposite direction.  For a good hundred yards away she stared at us, gawking with her mouth hung open.  I watched her out of my periphery through my sunglasses as she got closer, wondering when she would get her eye full and close her mouth.  She never did.  We may have some extra wheels, extra movements and extra sounds, but we are not blind.  It wasn't until I decided to have some fun with her, (because you have to have fun with people like this some how) when I looked at her the same way she was looking at me, that she brought her chin off her neck and finally looked straight ahead.  Brave woman - there were far too many flies swarming around that barn to leave your mouth hanging open that long.  Shocking that we would be more of a site for seeing for her than the newborn lambs or the milking demonstration.

So I want my tattoo.  Loud and clear on my forehead.  I want people to stop staring, commenting, sharing criticism masked as 'advice' -- and did I say staring?  Until then, I think my days of just being a wallflower are through.