Saturday, April 23, 2016

Autism Awareness: Light It Up Blue

Blue: The Color of Heaven

Light It Up Blue!

It’s April, Autism Awareness Month.

April also signifies National Poetry Month.

How do I compete with that?

Well, waxing poetic... Paul’s life is a poem.

Paul ran a half-marathon on April 2, 16

Here Goes:

    First things first. The coffee pot. After a restless night of haphazard dreams, that earthy caffeine is the only way I’m going to get this party started at five am. We have to leave by six for a half marathon that Paul is running today. Western Carolina University is an hour away.
    At 26 years old, Paul must depend on me to drive him to the race. He’s anxious (in a good way) to get there. I asked him the night before what he’ll wear.

     “My long running pants and running shirt. And a running shirt with long sleeves… I think-- (he draws this out slow). I’ll wear different shoes in the car and change into my running shoes for the race.”

    I’m listening to him close these days-- paying attention and measuring how articulate he’s grown the past few months.
    I attribute these subtle victories to what Our Lady refers to as “signal graces”. I’m a rosary prayer warrior. There are 15 promises associated with faithfully praying these divine mysteries. I’m starting to recognize their fulfillment. I pondered this, ‘signal grace.’ What does that mean? I take it to believe that it is a sign connected with what is so deep within our heart of hearts; that God hears our cry, our prayer. Paul’s 'peace', is a subtle, quiet victory. It’s not lost on me. I’m not alone in this. Every ‘autie’ Mom out there knows what I’m talking about.

    We get on the road. It’s pitch black in the mountains, no street lights. But we’re used to it. We stop for gas at Ingles. Paul doesn’t lose an opportunity to sneak in the grocery store with the night stockers to use the bathroom. The store wasn’t open yet and Paul stealthily stepped underneath the sensor to walk in. If anyone noticed, they didn’t say anything. They probably recognized him anyhow in our small town, “Oh that’s Paul. He’s alright.”

    Back on the road, the minutes seem to tick tock past, fast. We should have left earlier.

The morning sky emerges. It’s a privilege watching dawn rise over a blue ridge line.

    I lift my faithful rosary beads off of the rearview mirror. I can’t tell if its rattling disturbs Paul or he’s settled by it. Probably somewhere in between. I begin with the Seven Sorrows of Mary Mysteries. I’d picked up where I’d left off from Friday...Third Sorrow: Losing Jesus In the Temple.

    My thoughts: Oh Mary, how did you stand it? I always think of losing my Paul at Hilton Head Beach for a couple of hours as he wandered off for a walk without telling anyone. It’s part of my meditation to apply my own real life struggles to Mary’s; her's to mine. “Jesus, I worship you in this mystery.”

    All of a sudden Paul starts clenching his fist and smashing one against the other palm. But he controls it-- it’s diminutive. This is a recent trend for him to calm down sooner than later. I’m trying not to get anxious myself, for fear that he’ll crank higher and we’ll suffer an episode the whole way there. As the driver, it’s distracting. We experience it all the time, my husband and me, sometimes his siblings too. It’s like being around somebody in a bad mood. You never get used to it. You just endure it.

    “What’s wrong?” I ask.
     Paul speaks in fragments.
    “I’m worried of silliness. Of daydreaming--talking to myself--when I shouldn’t.
     When it’s inappropriate.”
    He continues: “Do you think I should be not talking out loud? Do you think I shouldn’t be not appropriate this way?” His voice rises and loudens.

    He stammers his words, showing the frustration he harbors for himself.

    I say, “Paul, let’s not focus on what’s wrong. Let’s focus on what’s right. I’m proud of you. You are articulate. Do you know what that means? Have you heard that word before?”


    “It means that you express yourself well. You don’t speak in broken sentences anymore. You’ve grown in how you speak. You can have a conversation now. We can talk about things.”

    “Okay,” he settles.

    I launch into a prayer aloud, taking the risk that it will annoy Paul.

    “Guardian Angel, and St. Michael (Paul’s patron saint), please help Paul calm down and let him know how much God loves him. St. Michael, the Archangel, please commission your healing angels over Paul.”

    I still feel strange, when I pray like this, something I started only recently. I was a Protestant so many moons ago. I was taught that we pray only to Jesus, not his mother, not the angels and saints. Old cemented foundations crumble hard. But I’m stretching my wings of faith. When your child is autistic, you’ll go out on any limb, even if it breaks, because it may just help. I guess that’s why it’s called ‘faith’, believing though you can’t see.

    Paul instantly stops his clenching and slapping.

    Is it because he’s 26 now? Human development and maturity we take for granted in our neuro- typical children. In our autistic children, it manifests as miraculous.

    We come up on the turn that short cuts our route to WCU. I’m nervous. Even with the GPS, in our rural area, the satellite doesn’t always get it right. Space is far away from where we live in the boondocks. The GPS adds 20 minutes to the trip. “What?!” I panic. Paul groans, “ugh, ugh, ugh.” He wrings his hands. This doesn’t help. What is the point of a shortcut if you get lost anyway? Somehow I think there’s a lesson here.

    We make it with 40 minutes to spare.

    It’s chilly. It will be good for Paul running 13 miles. He’ll warm up quick. He takes his place at the starting line. No lack of confidence here with about 40 or so runners all together. The starter prepares the racers with housekeeping details, water tables at the mile splits, ambulances at checkpoints, massages and food wait at the finish line, blah, blah, blah. “Are you ready?” she shouts. Paul soundly replies, “Yes!” (As if his response will start the clock.)

   I note that Paul is extremely composed. He’s aware of the other runners, and totally at home among them.  I see a maturity in him, earned from experience in running but also from living 26 years on the planet. He stretches a tricep and takes a deep breath. He’s trained as best or better than most, I know. in athletic cardio circles, our mountains are the reason for the adage, “West is Best.”

   “HONK!” There he goes!

“Go Paul!” I yell, then whistle with a thumb and middle finger underneath my tongue. An old swimmer whistle, now a lifeguard for my adult autistic son. My 5k race starts 15 minutes later. I run in solidarity with Paul. Really there is no other reason than to stay in shape for my job as a Mom, an advocate.

    Paul finished in 7th place with a time of 1:34. He placed third among his age group. Tough crowd. I thought how brave he is, how disciplined. I also thought that the autism hampered him a little. He wasn’t aware that if he’d trained a little harder, a little smarter, maybe ate less french fries, he’d do even better. But does that matter?

    He wasn’t angry at not placing first, or second, or even third. This too is a recent development, his acceptance of himself.

This was Paul’s race.
His race.
Blue. The color for autism awareness.
He lit it up blue that day.
For so many.
Blue. The color of heaven.





  1. Your story had me with you every step of the way - beautiful!

    1. Yay! A comment! A Mary Smith comment, no less!

  2. I love the way you drew those parallels to Mary and the color blue. Very beautifully done!

    1. Oh my Susan! I just saw this! Thank you for reading and commenting. Praying for Nat, and you, and Ned, and Ben, and Max...Amen.