Pappy Turkadee

Yesterday Brad and Charley went shopping for our Thanksgiving dinner. I could have gone, but I have more sense than to get between the two of them in a store. Somewhere in the midst of their shopping spree, Brad’s phone rang, and he turned his back to answer it.

You know those phones that will time out on you, or loose your connection when you are in a building? Yep, that best describes our phones. So, we walk around waving the phone in the air until we get an extra bar that means we might just keep the connection, please, just a minute more. Brad did that. He waved, and talked, and waved, and then the phone call was over.

He turned back around to Charley, and good luck with that, because Charley was gone. Proof that some people are not as thrilled that you’ve gotten a call, which can be interpreted as “Let the marathon begin.”

Meanwhile, Brad set out on his own marathon to find Charley, canvassing the store, yelling his name. Looking, searching, around this corner, around that. But Charley was nowhere to be found. Panic set in and he called me. “I can’t find Charley,” he said.

“Keep looking,” I said.

Sure enough, when he caught up with him, Charley had a basket overflowing with items we never use.

“I done, Dad,” he said.

Well, not exactly. He’d forgotten the potatoes, the green beans, and the cherry pie.

Brad looked through the basket. “Where’s the turkey?”

“I want kicken bones,” Charley said.

“We are NOT having Kentucky Fried Chicken, Son.”

“Yes I are, Daddy.”

“What’s all this stuff?” Brad said.

“I helpin’ you, Dad.”

He sure did. He helped fill the cart with shrimp (keep em’). Oysters (Put em’ back). Cherries, chips, (or “ships,” as Charley calls them), fried fish sticks ala Mrs. Paul’s, sardines (no thank you), a variety of cereals, pot-pies, bleach, you name it, it was there. Even the celery and the onions (keep em’). Later we learned that he’d participated in cooking Thanksgiving dinner as a class project for school, and that his part was to help make the stuffing.

Brad and Charley arrived home with the goods. Charley was proud of himself for his excursion, and on the way in the door, he put his arms around our necks. “Gwoop hug,” he said, “Misgibbing.”

Brad and I hugged him and exchanged glances over his head. “What?” It’s the look we give each other when we aren’t sure what he’s tying to say. “Say it again, Son,” Brad said.

“Misgibbing.”

Misgiving?

Speaking CharleyEase is a way of life in our house, but I have to admit, he had us stumped.

“Pappy Turkadee,” he said to Brad.

“Turkey?”

“Yeah. Misgibbing.”

Oh. I get it. Happy Thanksgiving.

And when we look at his face, how could we celebrate anything else?

From the Palmer family, and in CharleyEase, Pappy Turkadee everyone!

Voting Matters

Charley took this picture
of himself with my iPad - pre-shave, of course

It’s election night. I’m writing this half-asleep, which explains the typos. And I’d fix them for you, but well, it’s election night.

In our house the word “election” is synonymous with “up all night.” This means the TV stays on twenty-four hours while the votes come in and the states are announced. 

And even when it’s over and the electoral votes are counted, we still stay up because it’s not over. Surely there will be a miscount. Surely we didn’t hear it right. Surely there’s more to come. It means someone better have remembered to buy popcorn because it’s going to be a long night. It means we root for our pick. 

Brad and I don’t always agree on “our pick.”  Sometimes we cancel out each other’s votes, although I’m the only one who knows when this happens. Brad is a party-voter. I’m for the man whoever that happens to be. 


I never tell Brad who I vote for, because not only would it take the fun out of the election for me, but because sometimes fessing up causes a reaction from Brad where shoes start to fly in the direction of the TV, but at least he has yet to throw the cat, and you can’t buy entertainment like that.

Brad looks forward to election night. And why not? He’s spent the last year in bed with the commentators. In bed? Yes, I did say that. With Rachel Maddow. With Chris Matthews. When there’s an election coming up he stays up night after night in the living room, glued to the TV until he falls asleep with the clicker in his hand. 

I usually leave him alone. That way the snore drowns out the roar of the commentators who talk over each other and shout into the camera as if anyone can hear a thing they say. Chris Matthews is the primary culprit of whom I speak. I like Chris but my eardrums don’t, which makes me sorry to say that ear wax can actually be a good thing.

Somewhere along the line I end up dragging my fanny to the living room and nudging Brad and ordering him to bed (It's a sad day indeed, when reality hits that you have to order someone to bed), until he eventually comes into the bedroom where it would appear there’s enough of the night left to get some serious zzz’s, but this lasts 30 seconds or so until he turns the TV on and he gets his second wind and you can kiss the sand man goodbye.

So I watch the returns and try to learn as much as I can about swing states and electoral votes until it’s inevitable that the voice of Chris Matthews is the insomnia filibuster making it mandatory for me to sneak off to the work room where I can type on my computer which is what I am doing now. 

I’m hiding from the noise and the potential meltdown if my husband’s candidate doesn’t win which means it will be All over but the shoutin’ as Rick Bragg says.

All these years I’ve told myself that at least I have Charley. He’s on my side. He doesn’t scream and holler at the TV. After all, he’s a Beauty and the Beast buff. A Cher fan. A John Travolta grease monkey. Election night means Charley and I watch Free Willy. 

Until tonight. Tonight he has defected to the other side.

What does Charley know of politics? Quite a lot, actually. He knows that voting matters. And this means he matters.

He knows who his pick is. He knows he’s voting for Obama because he listens to Rush Limbaugh every day on the radio. When Rush dishes on Obama, and he does this a lot, Charley thinks he’s listening to Obama.

“See? Bama,” he says, “Dat guy said so.”

He knows that voting is such a big deal that it requires him to have a picture I.D. card. This involved getting an original notarized birth certificate, two pieces of mail to present with his current address, a trip to the Dr. to obtain a document that states that he has Down syndrome as if you can’t tell by looking at his face, a copy of his social security card, and a trip to the Department of Motor Vehicles and Homeland Security to have his picture taken. 

But first, a trip to the barber shop because the beard and the muscle shirt had to go.

The privilege of having a picture I.D. is a right of passage, and the right to have an I.D. meant Bye Bye Beardie, Hello Mr. Clean.

The right to vote means standing in line while holding his tote bag full of CDs with his headphones on, and waiting his turn with the rest of the voters and knowing that for this one moment, he is one of them. He gets to be in their club.

We early-bird voted because Brad and I couldn’t envision Charley waiting for hours just to 

push a button.

I can't help thinking though, that voting is a remarkable thing because its one of the occasions when we are all on equal ground. And I couldn't help being reminded of all the times when Charley hasn't had a say.

He didn't get to vote on whether or not he would have Down syndrome.

He didn't get to vote on all the times he's wanted to date some girl who might have dated him if only he wasn't different.

And what about the kids in the neighborhood who wouldn't give him a nod or toss him the basketball because they were afraid his Downs might rub off on them? He didn't get to vote on that.

He didn't get to vote on where he would live all these years, every time Brad had to move us from church to church. All the goodbyes. All the lost toys stacked in boxes in the garage every time we had to start over. He never had a say in that either.

But this time is different. This time he's old enough to have a say in who he wants as President. 

He was so excited at the prospect of voting, and especially proud of the picture on his first official I.D.

“Look Son, you’ve got your own I.D. Isn’t’ that great? Now all you have to do is show it to us and we’ll know who you are,” I said.

“Stop it, Mom,” he said. He knew I was yanking his chain and his lips curled into a Popeye grin.

Soon, it was his turn to approach the table where he would sign his name.

“See? I got me one,” he said to a lady who looked at his I.D. and directed him to the voting booth. “Nice picture,” she said. “Very handsome.”

“Yep, I am,” he said, waving the I.D. in the air. “I got a girlfwent,” he said to the lady. “I love girls.”

Mayday. Inappropriate comment alert.

“Son, this is a precinct, not a pick-up joint.”

He shot me a look, like, Knock it off, Mom. “My girlfwent love me,” he told the lady.

“That’s nice,” she said, pointing to the booth, smiling at me.

And with that, Brad and Charley stepped into the booth where Brad would help Charley cast his ballot.

I could hear Brad reading the instructions to him, and showing Charley how to turn the wheel and which buttons to push for his choices.

“I done, Mommy,” he said, as he walked away from the booth. “I boated.”

“We’re proud of you,” Brad said, as we headed out the door and straight to the Fountain City Diner to celebrate. It is on these rare four-year occasions when we get to have pie. No one diets on voting day. Oh the beauty of it.

Well, that’s that. At least I thought that was that.

Tonight I was at the library and took a peek at my cell phone. There were three missed calls from Charley, so on my break I gave him a quick call.

 “Hi Mom, gonna win.”  He sounded excited.

“How do you know?” I said. “It’s still too early to call.”

“Nuh uh,” he said, “I call you.”

“Not that kind of call, honey.”

“See? I got me phone,” he said.

Oh, forget it.

“Are you watching the election returns with Dad?”

“Yep, I am.”

Traitor.

“Son, we may or may not win, but at least you got to vote which means you got to have your say,” I said.

“Yep.”

And then, I got to have my say.

“Listen, Son, would you do me a favor?”

“Yeah.”

“Would you hide Dad’s shoes?”

“Huh?”

“Just put them somewhere out of reach.”

“Why?”

“Because I still want a TV that works when this is all over.”

"Okay, Mom."

"By the way, Charley, I meant to thank you."

"You welcome."

"Well, don't you want to know why?"

"Oh. Yes I do."

"I want to thank you for reminding me that voting matters because it means we all have a say, which means we all matter."

"Dat awesome, Mom."

It certainly is.

Call Me!

Here’s a picture of Charley with my cousin Joanie on my Mom’s side. I don’t know how our families do it, but even though we are scattered about the country, when we get together (and this seldom happens), it’s like we haven’t been apart for more than five minutes. 

When we were kids, our cousins lived in Virginia and we lived in Louisville, KY. Our families traveled more then, so we got together more often, but still not that often.

I don’t remember the last time I saw Joanie. Thirty years? Forty? In fact, it had been so long that I’m sure I wouldn’t have known her if I passed her on the street, which is a shame because she’s so worth knowing.

I didn’t know how much we had in common until the day after the funeral when the cousins came to the house and visited. 

Alan was the first to meet Charley the day we brought him home from Texas. Alan lived in Dallas at the time and met us at the airport so he could see the new baby. I think Marion and Anne met Charley at Alan’s wedding.

If there was ever an instant connection, it was Charley and Joanie. Not only does Charley have this way of knowing who likes him, he thinks of himself as a chick-magnet. It took him all of thirty seconds to consider Joanie a chick. And why not? Look how beautiful she is. Charley has good taste.

Poor Joanie. While the rest of us were visiting on the porch, she was drafted into watching a movie in the den. Jurrasic Park? High School Musical? Grease? Who knows what they were watching, but she sat right there and watched the whole thing, beginning to end. Little did she know that while she was just being nice and spending some time with him, Charley thought he was on a date.

From then on, Joanie belonged to him. And with good reason. You see, not long after the funeral, after the trip to the movies in the den, after we all returned to our lives, after Brad, Charley, and I returned home, a box arrived in the mail.

Joanie had sent Charley a phone. It was one of those razor-type flip phones. Joanie asked me ahead of time if Charley would like to have it even though it doesn’t work. I assured her that he would, because he likes anything with a little flip action, and this phone could flip. Now that’s a person who understands people like Charley.

So, while other people were looking cool on their phones, at school, at the dentist office, at the Dr. office, and yes, even at church, Charley wasn’t the least bit left out. He had a flip phone, thank you very much. He too, could be cool. 

 And little does Joanie know that Charley has been calling. Day after day he sits on the couch, in church, in the car, wherever, and makes call after call on that phone. He calls his friend ChrisKabo, his friend Jordan, Marcy (my sister), his Dad, and anyone else he can think of.

When he just wants to connect: “Dis Shawley Pama,” he says.

When he’s hoping to score a big date, (and I have no doubt he’s calling Jordan): “You, me, out date, movie, eat, fwowers (flowers), danceen (dancing), Honeymoon…”

When he wants something: “Mom say yes.” Followed by whateveritis that he wants. A new DVD, a new music CD, or a trip to Kentucky Fried Chicken for our Wednesday night outing to get “Kickenbones.”

When he’s mad at me. “Mommy mean!” He calls to report me to whoeveritis he’s talking to about my latest infraction.

It seems everywhere we go, he flips open his phone, and says, “Call me,” then holds the phone up and says, “I got me phone. See?”

Some people blow him off, thinking this is a little weird. Why, they've had their cell phones forever. It's no longer new to them, it's standard. But to someone like Charley who's never had a phone before, it's a life changer. It puts him into the cool kid category.

Some people though, are good sports and they smile and wave at him, or shake his hand and introduce themselves. 

Funny how he doesn’t care whether the phone works or not, as long as it helps him make connections.

When Brad and I noticed how much fun he was having with his Joaniephone, we decided it might be time to get him one for his birthday that would work because, what’s more fun than a flip phone? A flip phone that works, of course. 

And what’s more fun than a flip phone that works? A flip phone for each pocket. 

Anyone who knows anything knows that only having one of whateveritis is like snubbing the other pocket. Besides, he turned twenty-two on Sept. 29th, which qualifies him for the cool factor.

Now when he leaves the house, he has two flippy phones, not one. One that makes him look cool, and another that makes him look cooler. Now how cool is that?

The other day Charley was looking at my iPad, scrolling through the pictures, and there she was, Joanie, sitting with him on our porch in Louisville. 

This Joanie who lives so far away. 

This Joanie we hadn’t seen in decades. 

This generous Joanie who sees past disabilities and into the heart of a young man who knows he's different yet wants to be like everyone else, whipping his phone out to prove once and for all that he has and will always be cool because he too, has a phone. 

This Joanie who will now and forever, be just a phone call away.

“Look, Mom!” he said, and pointed at Joanie’s photo.

“That’s Joanie,” I said. “Remember? She’s the one who sent you the razor phone.”

"Her purrty," he said, as he looked at her picture. And with that, he reached into his pocket and held the phone up to his ear. “Call me,” he said.

And you know what? I just bet she will.

Call Me!

Duty and the Beast

What’s the definition of insanity? Cleaning out the refrigerator. Especially when you don’t have to. 

No one is standing over you, saying, “Clean this disgusting mess.”

Since Charley has never been much on housework (other than assuming the position to watch someone else), and neither have I, well, that’s two of us who live in this house who will do our level best to con someone else into doing it. He learned this from me. I learned it from Mom.

I promised myself long ago that I would not turn into my mother when it came to chores. She was the taskmaster. Every Saturday without fail, Mom would stand at the bottom of the stairs with a list longer than her measuring tape.

“This is a list of things you have to do today before you can go anywhere.”

“But Mom…”

“Don’t ‘but Mom’ me,” she’d say, and that was the end of the argument. You simply didn't fight with her, not if you planned on being let out of the big house on good behavior. 

I called it the Big House, because it was big. But honey, when you had to clean it? It was BIGGER.

I don’t remember my brother Mike being served with The List, but my sister, Marcy, and I did. 

It wasn’t enough to hand us The List. No, she had to review it with us as if we couldn’t read the bad news for ourselves.

“The baseboards need to be dusted. Get around the legs of the chairs. Move the furniture out of the way so you can vacuum. Clean the toilets, and don’t forget around the bottom of the toilet bowl. Yada, yada, and yada.”

Did she give us some kind of spray? Something like Windex? No, that would have been too easy. We got Comet Cleanser. The powder stuff that never comes off. Hated it.You have to keep wetting the cloth and wiping until the soap residue is gone. 

And there went Saturday. The sooner we could get it done, the sooner the weekend could begin.

So, yes. I learned to hate housework properly. The least she could have done was let us do it when we could fit it in. I’m sure we’d have found time between then and oh, a month or so later?

I tried this trick with Charley once. He arrived home from school one afternoon to find me holding a piece of paper. True, it was my shopping list, but he didn’t know that, and it looked official.

“This is a list of things you have to do before you watch TV,” I said, sounding just like Mom.

“Huh?” he said, and proceeded through the door.

Plop. The backpack landed on the floor.

“I will now review The List with you,” I said. This always worked for Mom.

Plop. Off went the shoes.

“I want you to straighten your stuff in the living room, stack your CDs and DVDs, take four of your boom boxes to your bedroom, collect your cola cans, and take out the trash. And then I have a job for us to do together.”

“I work at Henry’s,” he said. (Henry's is a deli and Charley works there a couple times per week as part of his program at school.)

“Good. Then you can help me in the kitchen.”

Plop. His body landed on the couch.

“Hey. Plopping on the couch is not on The List.”

“Dis first.”

I pointed to The List. “No, this first.”

"I'm waiting," I said, and stood in the middle of the room with my arms crossed, tapping my foot.

“It’s your mess.” I said.

“Yelpin’ me?” he said, handing the backpack to me while he picked up his shoes, and what do you know? I was drafted.

It only took us a few minutes to straighten the junk, which in our house means moving the clutter from one spot to another.

I stood and looked around. It was all there, just relocated. I couldn’t help but laugh. All that training when I was growing up, all the Saturday lists, and this is what you get? Reorganized disorganized clutter?

Charley broke my self-talk. “Ya pappy now?”

“Yes, I’m happy now.”

Plop. Back on the couch. Time for TV.

And I would have remained happy, except for one thing; I opened the refrigerator door.

This job wasn’t on The List. I thought we’d clean out the car. That is, until the fridge got in the way. “Son, how’s about helping me clean out the fridge?”

“Mom, you like dis song?” he said and turned up the volume. 

“I sure could use some help,” I hollered from the kitchen.

No response.

Cleaning the fridge. It’s a thankless job. But if he thought I was going this alone, he had another thing coming.

I walked into the living room and lay down on the floor. Anything to get his attention. Maybe he'll see how tired I am and feel sorry for me.

“Mom, sing.”

I kicked my feet.

He raised his head from behind the TV and looked at me.

“See what it does to me? Having to do it all myself? Look how I’m suffering. I. Need. Your. Help. Buster.” 

I kicked my feet again and just to turn it up a notch, I slammed my arms onto the carpet. Temper tantrum anyone?

“Mom, you silly human (woman). All I can say is, this didn’t work. And why would it? How can you elicit sympathy when the other party is laughing?

“Could you help me up?”

The next thing I knew, he was standing over me and reaching out his hand, pulling me up.

And then, back to the couch. But how lucky was this? The song in his CD player was Beauty and the Beast.

I looked at him. I looked at the fridge. I looked at him again. How long had I known him? Did I think the traditional whining and pleading was going to work? 

I went to his bedroom and there it was. Just what I needed. The plastic sword he’d used in the play at church a few years ago. I grabbed it, stood in the middle of the living room and did the only thing I could think of. I held the sword up in the air and started to sing.

So it’s time to take some action boys, it’s time to follow me. Kill the beast!

Again, he peeked from behind the TV.

I started marching around the room.

Kill the beast!

Kill the beast!

And just like that? He was on his feet marching behind me. Around and around, then into the kitchen.

Through the mist

Through the woods

Through the darkness and the shadows

It's a nightmare but it's one exciting ride

Say a prayer

Then we're there

At the drawbridge of a castle

And there's something truly terrible inside

I opened the door to the fridge.

It's a beast

He's got fangs

Razor sharp ones

Massive paws

Killer claws for the feast

He held up the sword.

I held up the Windex.

Hear him roar

See him foam

But we're not coming home

'Til he's dead

Good and dead

I handed him the sponge.

He handed me the sword.

I handed him the Windex.

“Huh?” He looked at me, like, what the…

I handed him a half-gallon of milk (his favorite thing in the world). He took a swig.

I pointed at the top shelf.

Kill the beast!

He started wiping while I pulled out the shelves and gave them a good scrubbing.

He took another swig and wiped some more. Wipe and swig. Swig and wipe.

At one point he did his best to abandon post. “Mom, I tired,” he said.

“Balderdash! It’s our duty,” I said.

I pointed to the clear pullout vegetable crisper drawers.

Kill the beast!

           

    “Sing, Charley.”

Again, he was spraying and wiping.

Two hours later, the deed was done.

The bad news is, he’ll probably never allow himself to be tricked into that again. The good news, is, the fridge was no longer a menacing force to recon.

And then, something I didn’t see coming.

“You Bootie, Mom.”

WHAAAAT?

“You bootie, I da beast,” he grinned.

“That’s funny,” I said. “I thought you were the handsome prince.”

School Bus Blues

I hadn’t planned on staying up this late (It’s 1:00 a.m.), but then, Charley’s upset, and when he’s upset, the house is upset.

What happens is this… One week before school. You-know-who is pumped up. He can’t wait to get back to school to see his “fwents.” The problem, is that his friends graduated last May. All he’s talked about all summer long is that he’s going to graduate on May 18^th.

“Me and CwisKabo (his name for his best friend), gwazuate May eighteenf.”

We tried to explain it to him.

“Charley, Chris already graduated this past school year.”

“Yes I do,” he says.

“This means Chris won’t be in your class this year.”

“Yes I are.”

Brad and I look at each other with that look parents sometimes give each other. “I don’t think he gets it,” Brad says.

“You think?”

Charley is sitting on the couch suffering through having to share the TV with us. 

“My school bus dwiver upin’ me amowwow.”

“Yes, the bus is coming tomorrow.”

“I see Dianne.”

“Honey, Dianne retired last year.”

“Huh?”

“Retired, son. It means you will have a new bus driver this year.”

“No not,” he says.

Day one: The bus pulls up. Brad and I go to the end of the driveway to meet the bus driver.

Charley gets on the bus with his CD player (walk-man style), and his headphones attached to his ears.

Later he gets off the bus. Same headphones. Same CD in hand.

Two relieved parents. Day one complete. Every day it’s the same routine. Everybody’s happy.

Two weeks pass. Still no word about the CD player. Everybody’s still happy.

Looks like it’s going to be a great school year.

Week three. Someone (the bus driver), decides to change the bus rules. Well, everybody was happy.

Brad calls me at work to let me know. “Charley can’t listen to his CD player on the bus anymore.” 

In Charley's words, "Holy cwap, Batman." That’s the card we play to get him on the bus every morning.

“They are afraid that if the CD player isn’t secured, it could injure others on the bus,” Brad says. “They said that he can take the CD player as long as it’s in his backpack.”

“Can he listen to his music as long as he doesn’t take it out of his backpack?”

“Nope. His headphones have to be in the backpack too. Oh, and one more thing. He can’t take his soft drink on the bus in the afternoon unless it’s in the backpack too.”

That’s his reward at the end of the day. He gets to go to the vending machine and spend his dollar if he's been good at school.

“So let me see if I understand this,” I said to Brad. “He can take these things as long as they are zipped up in his backpack because they are afraid someone will be injured if there's an accident?"

“That’s what it sounds like,” Brad said.

“Will the backpack be secured?”

“Well, no.”

"So we're not afraid someone could get hurt by a flying backpack?"

All I can say is brace for impact. And I’m not talking about the gulf. Although, that's where our thoughts are these days, and rightly so.

Another call from Brad.  “Charley just got home, and he’s crying.”

I know why he’s crying too. It’s not entirely because of the rule change, although that’s part of it.  It’s because up until now he’s been allowed to take his CD player and his drink on the bus. 

Charley can’t reason that mid-stream the rules have changed and he can no longer do the things that make him happy on the bus, and this translates into thinking he’s being punished.

“Why I twoublt?” he says.

“You’re not in trouble, honey, it’s a rule change.”

“Yes I are. My teacher bossin’ me. Her said no songs again.”

“Son, sometimes things change. It’s not Mrs. Bennett’s fault. It’s just the way it is.” Of course, this makes no sense to him. The one who delivers the bad news is the guilty party, right?

He lies down on the couch and stews for a while, but at least we’ve had The Discussion. I give it a proper name because it takes on it’s own personality. It’s not a one-time thing. It will live in our house for ever and ever. Amen.

A half hour passes. We have The Discussion again.

And we go at this about every half hour or so until it’s time for bed.

I’m exhausted. Can’t wait for my head to hit the pillow.

11:30 p.m. I’m half asleep when I hear his bedroom door opening. Then closing, then opening again. And again and again. Over and over. 

He’s hauling everything he’s brought from his room to the living room, and then back again. He can’t decide where he wants to sleep. A sure sign that Charley’s not happy.

“Mrs. Bennett says no sleep on couch,” he says when he sees me standing in the hallway. (Mrs. Bennett is Charley’s teacher. He must have confessed that he’s been sleeping on the couch. He started that back in March when he had dental surgery, and we haven’t been able to get him to sleep in his room since.)

“I sleep my woom,” he says.

“Well, could you hurry up? I need some rest.” Mama’s not happy.

12:00 a.m. Still hauling CD players back and forth, and tote bags filled with CDs and VHS tapes.

12:30 a.m. – Still going at it. Only, now he’s carrying his TV back and forth. And, there’s a fan in the middle of his bed.

“Charley, you can’t sleep with a fan on your bed. You have to put it on a table.”

“Mom, go,” he shuts the door so I can’t see, but that does not deter me from standing my ground.

“Charley, I mean it. Either put the fan on the table, or Dad will take it out of your room.” You can bet Brad won't be happy, not if he has to get out of bed.

He opens the door a crack. “Mo-om, geeze. Go.”

“And you’ll put the fan on the table?”

“Yeah.”

“I’m giving you ten minutes and then I’ll come check on you again.”

Thus, this blog. I take to the computer room to wait the ten minutes, and what do you know, I’m looking at FaceBook, wasting my time, chatting with the poor people who didn’t see me online in time to log off before I could cyber-stalk them, declaring once and for all that I am, indeed, annoying. 

Before I know it I’m writing about how tonight I don’t like my life. Then, since guilt is the boss of me I hit the select-all button and delete the whole stupid thing and find myself giving step-by-step instructions on how-to-not be me. Pity party, anyone? 

But that doesn’t do it either, because I’m the luckiest person I know. All I have to do is look at his face and it snaps me back into grateful. So I delete that too, and yes, there it is. The ten-minute deadline, and I crack the door to his room and find the fan on the table across from his bed. 

He looks up and grins, and says, “Hi Mom.”

He’s sitting in the middle of his bed, fiddling with his CD and DVD players. He works at it until he gets them in sync. One plays the sound track, while the other plays the movie. It can take hours, but he doesn’t give up.

“Turn off the TV and go to bed. You’ll never get up in the morning.”

“Mom, peeease.”

“You’re slipping,” I say.

“Huh?”

“It’s only 1:00. You used to keep me up all night.”

“Mom, back-a-bed. You sleep.” Slumber party, here I come - or not.  I know only too well how stupid it would be to sleep when he’s unsettled.

“Son, no one is mad at you. Go to bed. PLEASE.”

This is what the bus driver doesn’t see. He doesn’t see a household turned on its head, because what he should have done was to set the rules from the very first day. 

What he doesn’t see is that routine is everything to a person with Down syndrome.

He also doesn’t see that Charley taking his CD player on the bus has become routine and now it’s not only disrupted the thing Charley knows, it’s disrupted Charley.

6:00 a.m. Charley is out of his room hauling CD players (the boom box kind), back and forth to and from the couch.

He’s percolating but not his usual peppy self. He normally banters back and forth with his Dad while helping him make the coffee. This morning Charley’s in slow motion.  

There are things that make people like Charley move like the batteries are losing their charge. Things like fussing at him or trying to get him to hurry, or changing his routine without warning. These are the things that make him unsure of himself, deflate his trust, and run on empty. His world runs on happy.

“Let’s review this one more time. You are allowed to take your CD player as long as it’s in your backpack.”

Brad gets no response. Charley's hiding behind his TV mulling this over.

“Son, it’s time to get ready for the bus.”

“No tell me do,” Charley says. (Don’t tell me what to do.) 

“I not a baby, Daddy.”

“I know that, but you can’t keep the bus waiting.”

7:55 a.m. It takes him fifteen minutes to put on his shirt and his shoes, take his pills, pick up his backpack, and head to the end of the driveway to wait for the bus.

That leaves Brad and me, and the unstable winds heading our way. Will he try to sneak his CD player out of his backpack during the bus ride? Will I have time for a nap before heading off to work this afternoon? Will he rearrange the house at 1:30?

We don’t know. Like Isaac, we don’t know where it’s going until it gets there. The only thing we do know is that it’s coming and we can prepare ourselves all we want, but more likely than not, we will be impacted.

One thing is sure; it will be anything but routine.