April Walks With Autism

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.

So wow. People are starting to read my blog. So for those of you out there who don't know me personally, here's the abc's on who I am, today anyway.

a- April, it’s my name.. or so they tell me. In any given day I don’t hear it too much. Everyone I know has a nickname for me, including Myra who calls me, “Hooker,” Jeff who calls me, “Pet” (it’s a joke), and of course the name I’m called the most is….”MOM!!!!!!!” I would be remiss if I didn’t include autism under “a.” So I will say ~ autism: it’s part of my life but doesn’t define my life.

b- Boys. I gave birth to two and married one so I’m outnumbered!

c- Chiropractor. I’m one of “those.” I’m addicted. I love mine. He made my headaches go away. Without meds. And I used to get A LOT of headaches. Also? Candy. I friggen love it. The sugary kind like nerds or runts or gummy bears or orange tic tacs or gobstoppers. It’s really good for my 6 pack abs.

d- Doctors. I have the utmost respect for them (see: C). Dr. Edward Bove at the University of Michigan spent almost 6 hours repairing a heart the size of a walnut that had all of it’s arteries backwards and several holes in it. That heart belongs to my son Jared, and it’s one of the best hearts I will ever hope to know. When he was done with Jared’s surgery, there were 4 more families in the waiting room that he had to work on next. Wow. There are no words. Just ……… none. OH! And DANCE! I love to dance. Just the "let it all out," "get your groove on," "work it out!," "get down with your bad self," kind of dancing. Don't get to do it nearly enough so I usually just make up reasons to.

e- Expectations. I think I have a problem with them. I set them too high. Sometimes, people I encounter fall short quite often and it breaks my heart. I don’t mean too, I just think things like common courtesy and respect should be expected of people. Call me crazy.

f- Frogs! I love them, I have a little collection of them. It’s a little private joke because I grew up WAY in the country and the first time my nana (see: N) spent the night at our house, she couldn’t figure out what the he** all that noise was. Frogs. In the pond. Then she and I had a frog thing going on and I’ve kept it alive, for her. They always remind me of her.

g- noun: My mom. Her name is Grace. My staunchest supporter. My children’s staunchest supporter. verb: something we should offer to each other more often.

h- Howard Stern Truth: It’s a phrase we use in our house to refer to the absolute truth. First I have to admit, I have a crush on Howard Stern. You heard me, a crush. Because his brutal truth, honesty, and willingness to unabashedly and unapologetically say what everyone else is thinking is ridiculously sexy. And that’s where the Howard Stern truth came from. No BS, just tell it like it is. (See also: Q)

i- Irie. It’s a Jamaican slang word meaning: to be at total peace with your current state of being. The way you feel when you have no worries. Several years ago there was a 1-800 dial a crystal ball commercial going around and the woman reading your future said, “Everyting gonna be irie.” Then Brad Pitt said it in Meet Joe Black when he turned into a Jamaican woman (really?) and it’s become sort of a joke in my family and yet we tend to say it in our darkest hours and it somehow makes everything seem….irie.

j- Jared, my 8 year old. He is my heart.

k- My middle name. No really, it’s Kay. After my Nana (see: N) whose name was Catherine but everyone called her “Kay.”

l- Luke, my 5 year old. He is my soul.

m- Motherhood. The greatest gift I’ve ever been given.

n- Nana. Mine. She was my favorite person in the whole world. She died 10 years ago and I miss her every single day. And I’m still mad at her for leaving this world before she got to meet my beautiful children and share this journey with me.

o- Opinions. I have a lot of them. And I’ll tell you about them anytime you ask me to. But here’s the thing: I know you do too, and I’ll always respect that. God Bless America.

p- The first of two Babs quotes: “People who need people are the luckiest people in the world.”

q- Question. Don’t ask me one if you don’t want the answer. I will always answer a question in the most honest, open, obvious way that I can. That’s just me. (See: H)

r- Read. I love to. I read a lot of books about autism and education and important “stuff.” But the dirty truth is that I LOVE to read chic lit and romance and brain candy at the end of the day to just turn my mind off. I can blast through a book in a day if it’s decent. I won’t be able to tell you a single characters name within 24 hours of reading it, but while I’m in the moment, I’m lost and sometimes~that’s just where I want to be.

s- Silly. I really am. I love to be, I have to be, it’s part of my existence. Here’s another quote I love, “He who laughs at himself never runs out of things to laugh at.” Ok actually that was in a fortune cookie but I kept it and have it taped to my fridge.

t- Time. I really wish I had more of it. Teacher. Really wish I had become one. I still might.

u- Underwear. Luke ALWAYS wears it backwards. He KNOWS it is backwards and he doesn’t care. I have to say, it’s really cute. He always has at least one cheek hanging out. Oh, and they are usually inside out to boot.

v- Volunteer. I think I do way to much of it, but I can’t stop. If I have something to give, I want to give it. I do a ton of work with Autism Speaks and the TN Walk Now for Autism, as well as forming a support group here in Spring Hill and working at my children’s schools... a lot.

w- “whatever” ranks up there with one of my favorite words. Sometimes, there’s just nothing else to say.

x- rated thoughts about Justin Timberlake and Robert Pattinson. Sorry. I’m 12 at heart, what can I say? OK in this case, 16?

y- Yentl. Yes, Yentl. The Barbra Streisand movie. Shut up. I love this quote: “The more I live, the more I learn. The more I learn, the more I realize, the less I know.”

z- ZZZZZZZZzzzzzzzzzzzzzzzzzzzz I wish I could get more of them.

Raise your hand if you get a million "forward" emails in any given week pertaining to who-knows-what because you automatically hit the "delete" button when you see them?

Whoosh. That was a lot of hands going up, I felt it all the way through cyberspace!

Well, I'm on that list to be sure ~ and this week I got this email from my father-in-law and it was a letter that Erma Bombeck wrote. The mouse was hovering over "delete," but for some reason, I opened it instead. Who knows why.

I read it, a little bit stunned. Given what I wrote in my last post, I was kind of shocked to realize that Erma and I share(d) a brain. Crazy. So I wanted to share with you what the late, great Erma Bombeck had to say had to say about.......

sweating.

IF I HAD MY LIFE TO LIVE OVER - by Erma Bombeck (written after she found out she was dying from cancer).

I would have gone to bed when I was sick instead of pretending the earth would go into a holding pattern if I weren't there for the day.

I would have burned the pink candle sculpted like a rose before it melted in storage.

I would have talked less and listened more.

I would have invited friends over to dinner even if the carpet was stained, or the sofa faded.

I would have eaten the popcorn in the 'good' living room and worried much less about the dirt when someone wanted to light a fire in the fireplace.

I would have taken the time to listen to my grandfather ramble about his youth.

I would have shared more of the responsibility carried by my husband.

I would never have insisted the car windows be rolled up on a summer day because my hair had just been teased and sprayed.

I would have sat on the lawn with my grass stains.

I would have cried and laughed less while watching television and more while watching life.

I would never have bought anything just because it was practical, wouldn't show soil, or was guaranteed to last a lifetime.

Instead of wishing away nine months of pregnancy, I'd have cherished every moment and realized that the wonderment growing inside me was the only chance in life to assist God in a miracle.

When my kids kissed me impetuously, I would never have said, 'Later. Now go get washed up for dinner.'

There would have been more 'I love you's' More 'I'm sorry's.'

But mostly, given another shot at life, I would seize every minute.
Look at it and really see it.
Live it and never give it back.

STOP SWEATING THE SMALL STUFF!!!

Don't worry about who doesn't like you, who has more, or who's doing what Instead, let's cherish the relationships we have with those who do love us.

Wow, that's good stuff.

And finally, this ~ another quote from Erma that I just love:
"If you can't make it better, you can laugh at it."

YES!