Tuesday, July 14, 2009

Things aren't always what they seem

Since Luke was diagnosed with autism almost 3 years ago, I’ve given this topic a lot of thought. It has come to a head for me several times in the last few weeks so of course the best thing I can think to do is write about it.

We went to Arizona a few weeks ago to visit my parents. I was scared to death the travel with the boys, sans husband. You never know how Luke is going to react. Airline travel presents a whole host of issues for autistic kids. Busy airport, unknown scenarios, lots of transitions, waiting, having to take shoes off (OMG!), handing over security items TO security, loud noises, strange people, on and on and on. Then we get on the plane to succumb to confined spaces, loud noises, the expectation to be quiet and sit still for hours, etc, so on and so forth. Last time we traveled he did “ok” but Jeff was with me so we were able to manage things with a bit more ease. This time it was just me, an overstuffed backpack for each of us, and a laptop for me to carry as well (so the kids could watch movies of course!). So hands full, we headed out.

I encountered one of those moments where I actually felt bad, guilty even for selling Luke short, even in my mind. He was…….

a PERFECT traveler.

He was SO excited to go on the airplane! I think the anticipation alone of getting to the airplane helped him to overcome all of the actual airport drama. He carried his own backpack the entire time, took his shoes off and placed them in the bin on his own, followed my directions, stayed close, and listened well. He marched proudly through the tunnel and onto the airplane where the loud engine noises and tight spaces didn’t bother him at all. He buckled himself up as though he were a seasoned business traveler. Sure, he got a bit antsy at times when he couldn’t understand why it took so long for the brown drink cart to get to us but generally speaking, he was utterly amazing.

On the way back home, we had a one hour layover in Houston. Needless to say after spilling a large brown drink everywhere and making 2 potty runs, we breathlessly made it to the gate as they announced, “Last call for Nashville!” We hustled down and got in our seats as everyone gave us the evil eye. We got in our seats only to sit on the tarmack for 20 minutes while they attempted to fix the air conditioner, to no avail. Um ~ think about this people... Houston, Texas to Nashville, Tennessee with no air conditioning. Really? I know there’s the whole “once you get up at high altitudes it cools down,” bit but, REALLY? So Luke is getting a bit restless as we sit on the tarmack. At this point, I assure you, I am having a more difficult time keeping it together than he is. He starts kicking the seat in front of him. Not super agressivley, just more, putting his feet on the seat and then locking his knees down to create a gentle bounce. This must have really irritated seasoned business traveler with his snazzy Bose sound system attached to his iphone. (Purchased, no doubt, via the Skymall catalog) He turned around, and no, he didn’t glare at Luke. He glared………….at me. And everytime Luke bounced the seat, Dude’s heavy eyes came back upon me.

I’m going to quote my own damn blog right now. “Grace: something we should offer each other more often.”

It’s at this point I want to scream, “DUDE! REALLY? The kid has AUTISM! He is NOT screaming, he is NOT beating the crap out of me, he is NOT throwing things, he is NOT thrashing everywhere, Do you have ANY IDEA which a HUGE deal it is that he is ONLY bouncing your seat?”

Instead I say to Luke, “No no Luke, stop kicking the seat or that man is going to get really upset!” And then redirected Luke with some sort of magic trick I had in the backpack and did I mention there was no air conditioning so all the while I am LITERALLY dripping with sweat?

For the rest of the plane ride, I couldn’t help but wonder: if autism had a sign, a visual signal to people, would it make it easier for others to understand? Would it make it easier for people to offer “us” (autism parents and peeps) grace? I mean, I know I’m his mother, but take a look at Luke ~ he’s a beautiful child (she says with no shame whatsoever!). You can’t SEE it. There’s nothing about him that looks, “off,” at all. There’s nothing, “not normal” (ha ha) about the way he looks.

As a society, I think we tend to give grace in the more “obvious situations.” A wheelchair. A cast. A brace. A cane. A walker. Even down syndrome children tend to have a specific look that marks them as special. Children and people with physical disabilities often have a marked trait that shows them as unique. A missing hand. A crooked neck. A shorter leg that creates a limp. An arm that stays bent all the time. Muscles that don’t work how they should, creating visible signs of atrophy. Autism doesn’t have any of that. Autism has screaming, physical violence, hands over ears, screaming, heads banging against walls, flapping hands, kicking, screaming, throwing, thrashing, anger, walking on toes. And does society know that’s what autism looks like? No. What society knows is...

that’s what a temper tantrum looks like.

I had a tshirt made for Luke last year that says, “Hey! Keep staring and you might just cure my autism!” I usually wear 3 autism awareness bracelets at once, hoping, praying that someone will put it all together. I’ve made my full time job trying to raise autism awareness and I wonder, “would it just be easier to put a big tattoo on Luke’s head?” “I have autism, deal with it?”

I guess my point is, I wish it didn’t have to be this way. I wish we didn’t have to spell it out. I wish it didn’t take a special “look” or a marked characteristic to make people understand. And herein lies the reason. The reason why awareness is so important. The reason I have dedicated countless hours to Autism Speaks. The reason why, even though I pull my hair out on most days because my cup SO runneth over, I can’t stop. I want, I NEED society to reach a point, where we all just “get it.” Where I don’t need to explain. Where the masses understand.

But the other side of the coin is, we can apply this to different parts of our lives, too. It’s not just about “special needs.” Sometimes it’s about “people needs.” If someone is more quiet than usual, it may mean that something is weighing heavy on their heart. And then again, it might not. It might just mean that you, as a friend need to be aware that things are changing. Offer grace, offer space. Sometimes people do things that are motivated by reasons we don’t understand. Things that are out of character (to our eyes). Our job, as humans is to try to understand. To get behind the reason, and sometimes even be a crutch should that person begin to fall. And sometimes, even as a grown up, don’t you wish you could put a tattoo on your own head that says, “I’m just not up for it today!” or “Leave me alone!”

We need to remember these moments, our own days of struggle when we are looking out at others. We need to remember that there were times that we were children ourselves and we don’t even remember kicking the seat in front of us.

We also need to remember that walking in someone else’s shoes can sometimes be a much bigger pain in the a** than walking in our own.


Tara said...

I was thinking on the drive home from IN about the day you were standing in my kitchen and said "I think Luke has Austism."
He has come sooo far from that day. I am amazed at his speech and everytime I see him he has added some new foods to his menu. Hello, how about the four ice cream cones last weekend.
Your passion for Autism Awareness is as amazing as the mom you are. Kudos to you for all you do.

Joanna said...

Well said!!!!

C.J. Redwine said...

I remember flying from Cali to TN when Zach (ADD w/severe emotional control issues) was 2 1/2. He did really well until coming in for a landing when he'd had enough and had a massive meltdown. I couldn't comfort him and get him to stop b/c the flight attendant wouldn't let me hold him. He had to be strapped into his own seat. Nothing stops him but calming touch and I couldn't do it.

When we finally landed, I unbuckled him, scooped him up, rubbed his back and he instantly quieted. The lady behind me felt the need to inform me that my child was spoiled and all he needed was a good spanking to set him straight.

I nearly got arrested for assault.

It's hard because outsiders can't tell the difference between spoiled misbehavior and "disabilities." I don't know how you fix that w/o a sign on your kid's back...

April said...

I'm telling you CJ, tattoos. It's the only way. Actually your Zach was on my mind when I wrote this. Your boys walked into my house and I thought, "Wow those are some beautiful children!" But, you've told me similar stories, so I know you feel the frustration too. I mean maybe their tattoos should say, "Don't hate me because I'm beautiful?" =)

Melissa said...

This is something that has been on my mind a lot for several years!
People are judgemental, even the best of them. But people are also forgiving and empathetic... IF and WHEN they are "reminded" to be. People may lurk away in fear or discomfort when faced with a person of obvious, outwardly obvious, delays...but like you said, Autism is for the most part a hidden thing. And people snap to judgement over behaviors without taking a moment to consider what may be causing those behaviors in the first place.
And people are hard on parents. They don't cut us any slack or extend any consideration for what we are dealing with. It all boils down to societal ignorance. And you know the saying about ignorance being bliss. They are blissfully unaware. And in turn they burdon us further. It's like a really sucky never-ending cycle.

Anonymous said...

Nicely said!!! So true on so many levels. Society is ignorant~!! I get so tired of the looks like Special Needs are aliens or something. Just ask if you don't understand. Would be so much easier to explain. Than the stares.

Keep fighting for Awareness.. I wish you well on your continued path for Awareness... You are an awesome advocate for Autism!!! They are blessed to have you & your motivation!!!

Mr. and Mrs. Jackson said...

Ok, I'll admit it to you, too... I'm a total blog stalker of yours and my friend, Myra, asked me to leave a comment so she could donate to Autism Speaks...

Mr. and Mrs. Jackson said...

...so here I am. Trying to up Myra's total. :) I am a teacher at CRES and I love working with students with autism, so I really enjoy reading your posts! Sometimes I feel like I need to show your stories to other parents I meet whose children have autism. You are such an encouragement! :)

Mr. and Mrs. Jackson said...

So you can tell sweet Myra that she owes Autism Speaks...

Mr. and Mrs. Jackson said...

Four bucks. :)

Mr. and Mrs. Jackson said...

Ok, five. :)

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