Friday, November 22, 2013

Live on, JFK

I'm a winner!
Because of the Kennedy legacy, people like my Charley are able to call themselves athletes. In my house, it sounds like this:

"Close you eyes, Mom."

I close my eyes.

"Put out hand."

I open my hand, holding it in front of me.

"No peeking."

Something metal is placed in my hand.

"Okay, eyes open."

There, in my hand, is a silver Special Olympics medal.

"Wow! Did you win this today?"

"Yep! I play basketbalt!"

"Remember, Charley, it's not the medal that makes you a winner. You are a winner because you are you."

"Yep, I am." He's beaming with pride.

He takes the medal out of my hand, puts it around my neck, and kisses my cheek.

"I'll never take it off," I tell him.

I have the Kennedy's to thank for that. Because the Kennedy's unlocked the door of disabilities, reached through the portal of possibilities, and reminded us that, "We all breathe the same air," people like Charley have been welcomed with opened arms and lifted up with open hearts.

Today brings with it memories for those of us who learned of the assassination of President Kennedy 50 years ago. I was in the fourth grade sitting at my desk thinking about throwing a spit-wad into the beehive on my teacher's head when a woman stepped into the classroom and made the announcement. Little did I know at the time, that she was talking about someone who's pioneering family would have such an effect on my own, so many years later, in the form of Special Olympics.

For those who may not know, Special Olympics was born as the result of Eunice Kennedy Shriver starting a camp for special needs people in her back yard. A place where they could run and play, and be themselves. A place where they were accepted exactly as they were, encouraged to be the best they could be, were taught to encourage others, and were celebrated for their accomplishments. I am humbled and inspired by difference makers.

Because of the Special Olympics, people like my Charley know the roar of a cheering crowd. The anticipation of starting the race. The thunder of clapping hands. The excitement of the finish line. The happiness of a teammate's arm around a shoulder. The pride of hanging a medal around a mother's neck.

Yes, President John F. Kennedy died too young, and today we pause and reflect. It was a tragic day in the life of our nation and we remember his family in our prayers.

But in the backdrop, isn't it nice to know that he lives on every time a Special Olympian's tennis shoes hit the racetrack. Every time the swimmer's arms make another splash. Every time the volleyball is launched over the net. Every time a parent looks into the face of their special needs child and says, "Congratulations!" Every time an athlete feels like a winner.

Rest in peace, JFK. 

Remind us to breathe the same air.

Compete with pride, Special Olympians.

Inspire us to be the best we can be.

Thursday, November 21, 2013

The Pledge

Not sure what brought this on, but when Charley got off the van yesterday (the one that takes him to and from the Sertoma Center every day), he burst through the door, went to Brad's recliner and plopped.

"How was your day, Son?" I asked.


He handed me a red slip of paper that had instructions for basketball Special Olympics. "Wead dis, Mom."

I held the paper up and said, "Special Olympics is tomorrow."

"Mo-om, I no he-wit." (Meaning, read it out loud.)

I did. I read every word. By then he'd peeled off his shirt and stood in front of me with his hand over his heart.

"I pwedz wegens, fwag..."

"Shouldn't you put a shirt on for this?" I asked. “It just doesn’t seem appropriate…”

"Mom, FOCUS."

Yesterday he told me to breathe. And with good reason.

What should have been a nice, relaxing break for us (Charley was at camp) turned into a bulldozing frenzy. More specific, Brad submarined his room, carrying out everything imaginable (and unimaginable). Into the trash it went. That's what you do with a hoarder. You wait for the opportunity, which in our case meant we waited until Charley was out of the house for a few days.

Not that we haven't tried. We've beg, pleaded, bribed, withheld privileges, scolded, sweet- talked and shamed him.

And oh, the fights. They sound like this:

"Charles Benjamin, you are NOT to throw trash on the floor."

"Clean up your room!"

"My God! Look at this mess! If you don’t clean it up, it’s going in the trash."

In the end, he's going to be who he's going to be. Not all people with Down syndrome hoard. But from what I’ve read, a good many do. Which means ambushing him when he's gone. Mostly by Brad and his cast iron stomach. (I couldn’t help much because of my busted leg. Not sure whether to dissolve into guilt or sing the hallelujah chorus.)

Disgusting? Yes. Gross. Vile. Boy funk. You name it.

Brad and I braced ourselves for the explosion when he returned home.

"He's going to freak when he sees we've been in his room."

"Hold onto your panty girdle, it won't be pretty."

What we expected was a temper tantrum. What we got was relief.  He even said "Kank-u." But not before trying to change it back. It took all of 30 seconds before we heard tables being moved, things being shoved around, like, you’ve had your fun, Mom and Dad, but don’t you know to leave things the way you found them? I opened the door and peeked in.

Well, that did it. A moment later I stood in the middle of his room and began the lecture from you-know-where. You know the one. The don't-even-think-of-doing-what-ever-it-is-you-are-thinking-of-doing lecture. The one that's too late because it's already done. Yep, that's the one.

"Charley Palmer. Your Dad worked hard on this room. And YOU, are not wrecking it. Period."

He stood up, put his hands in front of him and pushed them down and out to his sides, sort of like a whoosh, and said, "Breathe."

Oh. Was I not brea-thing? "Mom, you face is wed." I guess so, I was fixing to blow.

"Bweathe, Mom. Camp said so."

"Did they teach you that at camp?"


He demonstrated again how to take a deep breath.

It helped. I left the room, laughed, and returned with a smile. Here was my son, telling me not to sweat the small stuff. (Not that his mess is ever small stuff). He was home, back from camp, safe, happy, not melting down over his gutted room, but simply moving the table closer to his bed so he could reach the TV. (Heaven forbid he should have to move one inch to operate the DVD player.)

I helped him. We fixed the table – the one that’s falling apart. “Don’t breathe on it,” I said. “I’m out of duck tape.”
“Okay, Mom.” He was grinning.
We arranged the cords so they wouldn't get all tangled up like before. I wagged my finger at him. "A clear path around the bed. This is NOT negotiable," I said. "And the trash BETTER find its way to the trash can. And we BETTER not find any trash under the bed."

"I got it, Mom. G
"We're calling you on the carpet, Son. Consider this your first and final warning." (Just call me hash tag #nag.)
He's been home since Sunday. Today is Wednesday. Every morning Brad and I do the Palmer-Patrol. We walk around the bed inspecting the floor for any signs of trash.
But just to be fair, we laid out the ground rules:
  • One piece of trash equals one DVD gone from his bed.
  • One chicken nugget on the floor equals the remote control in our possession for the day.
  • One coke can or milk carton on the floor equals the TV locked in the trunk of the car.
"Do you understand?"
"I got dis, Daddy."
He's been doing pretty good. So far. The Sermon Man (that’s Brad) reminds himself to breathe. The nag reminds herself to breathe. Meantime, it doesn't hurt to remind him too.

There comes a time when the house has to win.
So I stand, put my hand over my heart, and recite the Pledge of Allegiance with him.
"Repeat after me, Son."
I pledge allegiance to my room
Of the United States of America.
And to the carpet on which it stands.
One piece of trash, under the bed
in misery and justice for all.

Friday, November 1, 2013

Procrastinating Mommies

Waiting for Trick-or-Treaters

Procrastinating mommies are easy to spot.  Those of us who wait until there’s no hope of getting a Halloween costume, then park as close to the door as possible, and stampede into the store, hoping not to hurt anyone in the process. 

We meet every year in the costume aisle at Wal-Mart about a half hour before the official Trick or Treat thing is to begin. That’s the way we like it.  It works for us.  This way, we don’t have to worry about what to do when we get there.  We already know what’s left...nothing.  

Still, we are there to do the mommy thing.  Also, there’s the thrill of the hunt, and we can prove it.  Shoulder to shoulder us procrastinating mommies stand, crammed into the same aisle, attempting not to invade each other’s body space, holding up bits and pieces of costumes that have been trampled underfoot. We hope for a miracle, which would consist of actually finding a costume that accommodates our children’s body sizes, without causing us to mortgage our homes to pay for the goofy things. Then, we discover what we already knew we would discover, which is the crabby reality there is no way we are going to pay that, not when our kid is going to wear it once we move on to plan B.

Plan B. Reconsider. Impress the neighbors if you have to, but cue for the chocolate. The candy that matters. The ones you don’t let your kids have before bedtime while you count the minutes until dreamland visits the premises and you can be alone with the Kit Kat bars. Twix. Mini packet of M & Ms. So what if you pay the ten bucks? You could go to the candy aisle, purchase your own Snickers minis, and be known as the one who hands out the good stuff, or you can pay your ten bucks for the costume like the rest of the procrastinators and get the free stuff.

Plan C.  Snap back to the moment. Fuss about the lack of choices as if it isn’t our own fault.  “Can you believe this pitiful selection?”  Some of us mouthy moms approach the poor sales ladies at the store. “Pardon me, ma’am, but do you perhaps have a Batman costume in a size 6?”  This of course, puts the poor saleswoman in the position of having to maintain a poker face while hee-hawing on the inside from her own self-talk (What a dweeb.  Reality check, ma’am, its 10 minutes before Halloween is to begin. Get a life honey, nothing’s left).  These sales ladies are good, though; they manage sympathetic smiles while walking over to the costume rack to help us look for what we all know isn’t there.

Plan D. Drive to Rite Aide to see what they have left.  Even though there’s virtually nothing there either, we do have reason to smile.  Why?  Because we have the aisle to ourselves.  At least, for approximately 30 seconds before the rest of the mommies burst through the front door.  It appears the other mommies have had the same light drizzle (you can’t exactly call it a brainstorm).  Perhaps there will be something, anything at Rite Aide that might come close to resembling a costume.  Which brings us to Plan E.

Plan E.  This is where the real creativity of us procrastinating mommies begins to percolate.  We strategically place ourselves in front of the cashier at the Rite Aid counter, holding a piece of what used to be a costume, which has been dismantled from its price tag, hoping that the cashier will have a sudden case of mental pause and not remember the price.  Perhaps, we think to ourselves, the lady will see the panic on our faces, look at the clock and realize there’s only 10 minutes till the door-to-door candy campaign, and mark the price down because the store doesn’t want to get stuck with it. 

“How much?” I heard myself ask, only to add “If you give me a good price on it, I’ll take it off your hands.” 

Wishful thinking.  Fat chance. 

“That piece is $9.99," she answers.  

“For this?” “There’s nothing to it.  It’s a red thing.  The material alone at a fine fabric store would have cost me 50 cents.”  It appears that I’m not going to wind up with the red thing.  There’s absolutely no way I am going to spend $9.99 on a red thing.  The cashier is not a bit concerned.  She knows only too well that the mommy standing behind me in the check out lane is salivating, hoping I will put it back so she can get it for her kid.

Plan F. Run at top speed back to the car, drive back to Walmart, circle for the closest parking space, and rush to the aisle that has little boy’s sweat pants.  Buy a black pair of sweat pants for $4.95, and a black sweatshirt with a hood for $4.95. Race home and convince your kid that he is going trick or treating as Darth Vader.  I was one of the lucky mommies.  My child fell for it.  I also had a pair of sweat pants and a sweatshirt left from the big night that could be used as pajamas or an every day play outfit.  And it only cost $9.90. Nine cents less than the $9.99 I refused to pay. I win.

Procrastinating mommies understand each other.  We know we don’t have to worry about our nerves, because they’re already shot. We know that no matter how good our intentions, we will still find ourselves in Walmart 10 minutes before Trick or Treat time next year.  How do I know?  Because while I was standing there some woman looked over at me and said, “Haven’t I seen you somewhere before?”  Of course she had.  “That’s funny,” I grinned.  “I was just thinking the same thing about you.”

I am happy to report that I only succumbed to this Procrastinating Mommy routine a total of seven times before it hit me that Charley didn’t even like Halloween. He was terrified of the scary music people played at their houses. He was afraid of the goblins he met on the sidewalks. He cried and hid in the back seat of the car while we routed through his pumpkin bucket.

 Plan G: Let the kid decide.

And he did. At eight years old, Charley stood outside with his Batman cape and waited for what he called the “wittle kids.”

To this day, without fail, he announces, “I hate Hoween.” And at twenty-three years old, he still hands out the candy.

Well, minus a few Kit Kat bars.
Handing out the Candy