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.

Hoops for Hope - because everyone can use a little hope

When Charley woke up on Saturday morning, what he thought was that it would be a typical day with BraddyDad (his latest nickname for Brad). 

What it turned out to be was a trip to Farragut High School to participate in the DSAG (Down syndrome Association of East Tennessee) Hoops for Hope – a yearly event designed to spend a day of fun, for individuals with Down syndrome.

Just the idea alone is awe-inspiring, as the University of Tennessee men’s and women’s basketball teams act as coaches, friends, and pals while the participants shoot hoops. 

I was unable to go because I was working, but that’s okay, it was a chance for some father and son bonding, and it must have worked because it translated into much more than just a day of fun. 

You see, when someone like Charley steps onto the court, it’s not really about how many hoops he can make. For Charley, it’s about being included.

Brad texted me throughout the day, giving a blow-by-blow description of the events as they unfolded. 

First, there was the gauntlet of Cheerleaders who formed two lines that the participants ran through as they were slapped high-fives. 

What these cheerleaders didn’t know was that Charley considers himself to be their equal, and he could prove it. There’s nothing Charley likes more than girls, and he made no secret of it as he ran the line, hugging each one.

“Hi Purty, I Shawley Pawma,” he said, making his way from one to the other, gathering as many hugs as he could, and stretching his thumb and baby finger from his ear to his mouth, and saying, “I love you. Call me.”

“He’s in heaven,” Brad texted. “He’s flirting with the cheerleaders.”

“No doubt,” I texted back.

That alone would have been enough. He could have gone home at that moment knowing all his “Purties” had hugged him. But there was more in store.

The teams sat with each other. They each got a power drink (something like a Thirst Quencher).

And then, the moment that made Brad gleam with pride.

“They’re playing the National Anthem,” he texted.

Then, another text. “He’s standing.”

“He’s got his hand over his heart.”

“He’s mouthing the words.”

Another text. “Oh, Sherry, I’ve got tears. "Grobbie" (Charley's nickname for my father, who passed away in June) would be so proud.”

“Wish I could be there,” I texted back.

The good news is that I got to witness it through Brad’s eyes.

The rest of the day I too swelled with pride. But I was also humbled. Charley was having the time of his life, and it was because of the efforts of DSAG and the UT athletes. Athletes whose job it is to win trophies and bring recognition for their school. Athletes who live in the spotlight during the peak of their season.

But not in this case. This time the athletes stepped out of the spotlight and turned the focus on the participants; people, like Charley, who have the overwhelming task of trying their best to be recognized, not for their disabilities, but for their abilities. 

On this day, people like my Charley didn’t fade into the background. Instead, they were the stars. And it was made possible by the generosity of the UT players who recognize that life isn’t always about them. It’s about cheering for others. It’s about celebrating opportunities by paying it forward.

Charley, of course, doesn’t know this. All he knows is that he was hugged by “Purties,” slapped high-fives by coaches and athletes, was given a DSAG Hoops for Hope T-shirt, and that he walked away with a medal and bragging rights. 

But here is what he does know. For a moment, he wasn’t “That Downs kid.” For a moment he was one of them. That’s all he wants, you know. He wants to be a “part of.” 

And for a moment, he was.

Life With Charley: Man who would be President

Life With Charley: Man who would be President: It seems only fitting in this Presidential election year to talk about Charley’s political views.   First, and let’s get this over w...

Man who would be President

It seems only fitting in this Presidential election year to talk about Charley’s political views. 

First, and let’s get this over with right now, when Dad was alive he would call Brad and ask whose turn it was to take Charley into the voting booth.

It doesn’t take a political science genius to figure out that Brad and I cancel out each other’s votes. At least, that’s what I want Brad to believe.  

The truth is, Brad never knows whom I vote for because I don’t tell him. It drives him crazy, but since it’s one of the few things I don’t have to tell, I don’t. Besides, if I tell, it won’t be fun anymore.

Dad's theory was that whoever's turn it was to take Charley into the voting booth got to vote twice. But he would be wrong. Neither one of us tell Charley who to vote for. We may help him if he needs it, but that's it.

Most people would assume Charley knows nothing about politics. After all, he has Down syndrome, right?

Well, let’s see about that.

First, Charley knows exactly who the President is. He always has.  When Clinton was in office, he would point at the TV screen and say, “Pesent.”

I would say, “Peasant?”

Charley was very young at the time.

When Bush was in office, Charley would point to the screen and say, “Pesident Buss!”

When Obama took office he’d point to the screen and say, “Daddy, look! Bama!”

Charley has always liked the President, who ever he is. 

Second, he doesn't care if the President is black, white, yellow, green with pink hair, rich, poor, likes or hates broccoli, stands for gay-pride, or has Howdy Doody ears. The President is the President, and it's Charley's job to cheer him on. 

This is and always will be one of Charley's greatest gifts, and a for me, a source of Momma-pride.

One of his favorite movies is The American President. Although, I think it sometimes confuses him. One minute he’s pointing to Michael Douglas and then there’s a commercial with Obama, and then back to Michael again, and he's looking at us like, what the heck?

He doesn’t stay confused for long. Charley has a small black radio and he listens to Rush Limbaugh on the radio every day.  Rush is always fussing about President Obama. So much so, that he fusses at Brad and I if we talk during Rush’s program.

“Mom, Dad, no talkeen, da Pwesident’s on.”

“That’s not the President, Son, that’s Rush Limbaugh.”

“Uh uh, Bama, dat guy said so.”

“No, Son, he’s fussing about Obama.”

“Uh uh, Dad.”

“Yuh huh, Charley.”

And Rush gets cranked up again, yelling “Obama care” into the microphone, and Charley looks at us and says, “See? Dat Bama, dat guy cares,” like, geeze, you guys just don’t get it.

I suppose there’s no way we can convince Charley it’s not Obama.

But what about the boy at the Special Olympics?

Brad and I both went to the park one afternoon to watch Charley compete.

Charley wasn’t exactly happy about this. We weren’t sure why, but if I had to guess, I’d say it’s probably because he was afraid we were there to take him home.

But there was an athlete who was thrilled.

No one else had on a suit and tie, but since Brad had a lunch meeting he was dressed in business attire. He stood at the top of the stairs watching as Charley was on the podium, being presented with his medal. As he started to clap, a wide-eyed athlete climbed the stairs and came face to face with Brad.

“Are you the President?” he asked Brad and stuck out his hand with a big grin. Brad tried to hide it, but I saw the ego boost on his face.

Brad shook his hand and said, “No, sorry, I’m not the President.”

By then Charley was standing beside them. “No silly,” he said to the boy. “Dat my Dad.” 

At least he didn't ask Brad if he was Obama.

Will the WEAL Mail Twuck Please Drive Up?

Josie and the Pussycats, anyone? Just what Charley had been waiting for. I ordered the music CD on Amazon. It’s Charley’s job to get the mail every day. He knows what the mail truck looks like. It’s small, white, square.

So why was he running after the UPS truck?  I thought I heard a commotion outside the window and sure enough, there was Charley, jumping up and down, flagging down the UPS truck. I watched for a moment as the truck stopped and the two men inside leaned towards the door, then I went outside.

Charley was trying to explain it to them. “I waiteen here,” he said.

One man said, “Are you waiting for a package?”

I started to walk down the driveway. “Mommy, go back aside.” He waved me away. But I hung around just in case he needed help. Okay, I take that back. In case they needed help.

The man said, “We don’t have a delivery for this address.”

Charley said, “Josie, pussycat.”

The man next to the door said, “Sorry, Buddy, maybe tomorrow,” and they drove off. Charley chased the truck to the corner and gave up. I walked halfway down the street to meet him. 

“Honey, that’s the wrong truck,” I said.

He hung his head and came back inside.

About a half hour later here came the Fed Ex truck.

Ditto the scene with the UPS truck.

“Maybe tomorrow,” the man said, and drove off.

More running after the truck, to the corner, and then slumping his way back home.

“Wrong truck,” I said.

About fifteen minutes later, here came the real mail truck.

This time, Charley walked to the end of the driveway and put his hands on his hips.

“You got my Josie Pussycats?”

The woman who drives our mail truck is used to Charley, and she’s always sweet.

“Maybe tomorrow,” she said. “I promise to keep an eye out for it.” Off she went.

Charley pointed as she left. “Dat da weal twuck?” He’s no dummy. He’s seen this truck before.

“Yes, son, that’s the real truck.”

“Where my CD?”

Again, I promised him it would be here soon.

The next day we went through the same routine with one exception. This time the UPS truck and the FED EX truck didn’t stop for a chat. They just sort of slowed down but kept on going, while Charley chased the trucks to the corner. The mail truck stopped, of course, and the mail carrier handed him some envelopes.  She waved at me. “It must be pretty important,” she said.

“It is,” I replied, and waved goodbye.

“I mad,” Charley said. “Dat twuck no bwing Josie Pussycat.”

Another promise that it would be here soon. And then, I lied.

“It’s coming from California,” I said. “That’s a loooooong way from here.”

I got out the iPad and showed him where California is and said, “Sometimes it takes several days. Anything to buy some time.

Wednesday rolled around. Still no Josie and the Pussycats CD.

Thursday, Friday, Saturday. No CD.

Sunday. Charley assumed the position beside the mailbox.

“We don’t get mail on Sundays,” I said.

“Yes I are.” He said, and stood firm until he heard a clap of thunder and abandoned his post.

Finally, Monday came. I watched as the UPS truck didn’t even slow down, but sped up as they passed our house. Ditto that for the FED EX truck.

This time he refused to come in the house. “Enough!” he said, squatting down next to the mailbox and waited for the mail truck.

I yelled from the doorway. “What are you doing, son?”

“I waiteen da weal meal twuck.”

I shut the door.

And then, the sound I’d been hoping for. It was the sound of running feet, and they were heading toward the house, not away from it.

Josie had decided to show up, and had brought her pussycats with her.

“Which truck brought the CD?” I asked.

“Da weal twuck!” he said.

And just like that, that was the end of that.

Or not.

The next day, he stood beside the computer. “You order my CD?”

“You got your CD,” I reminded him.

“Wong one.”

???

“Which one do you want this time?”

“Bootie Beast.”

“Beauty and the Beast?”

“Yeah.”

“Take out the trash and help Dad with the chores and I’ll order it for you.”

Monday rolled around. More truck chasing.

I got out the map. This time I showed him South Africa. “That’s a long way from here. You may have to wait a while.”

“Yeah,” he said, and went out side to wait for the weal mail truck.

The weal truck pulled up. “Maybe tomorrow,” she said.

Or, Maybe not. I forgot to order it.

I Pledge Allegiance

5:30 a.m. Bet you were asleep. I would have been too, but that’s when things start to percolate around my house.

Charley is a lot of things. He’s funny. He’s playful. He’s a great big brother to our two cats, Gizmo and Gravy Train. He’s also patriotic.

This morning while most of the United States was in dream land (it was, after all, 5:30 on a Sunday morning), I was awakened to the Pledge of Allegiance. Probably the TV, I thought. Or, Charley’s radio. Or, my imagination.

I listened closer. It couldn’t be the TV; we have ground rules in our house. No slamming the front door, no stubbing your toe and yelling, no fussing at the cats, and no TV blaring until everyone is up.

I tiptoed to the living room, and there, standing at attention with their hands over their hearts were Brad and Charley, holding up a flag and reciting the Pledge.

Charley’s voice was ernest: “Pedz legenz to flag, states Mewaca. To public stanz, nation, God, justice, all.”

I tiptoed back to bed, crawled in, and I have to admit I giggled under the covers.

And why not? I half expected him to be cutting up and laughing, but he was dead serious.

The pledge at 5:30? Then it hit me. During the opening ceremonies of the Olympics he kept watching the TV, asking, over and over, “Where’s me?”

I thought he was joking, until it occurred to me that he expected to see himself in the processional. He kept watching, then bouncing up and down on the couch when he thought the next face he would see would be his.

He looked at me with this perplexed expression like; I do fit into that category, don’t I?

“You are here, Charley, cheering for the Olympians. Just like when you are at the Special Olympics, other people cheer for you. Sometimes we are meant to watch from the sidelines.”

He cheered when Gabby Douglas won the gold in gymnastics, and when Michael Phelps swam his way into history.  He watched as the National Anthem was played and the flag was raised. He consoled Phelp’s mother when she lowered her head and cried. “T’s okay,” he said, “No sad. No cwy.” (You can't explain tears of joy to Charley)

I couldn’t help but think of how Dad would have loved that. Dad was a true American - one of what Tom Brokaw calls, “The Greatest Generation.”

Charley won’t ever go to war. He won’t leave his family for months at a time. But that doesn’t mean he’s not proud to be an American. He’s been watching the Olympics all week, and his support of the Olympics has been pretty great, even if it has been from the couch.

This morning, at 5:30, hearing him recite the pledge with his Daddy reminded me of just how great it is to be an American. And, to have an Olympian in the house. 


Even if it is a Special Olympian.

Gizmo
reluctantly poses on the podium after being presented with one of Charley's gold medals

The Great Pretender

Here’s a picture of Charley waiting in the car. He’s wearing my sunglasses. They look better on him than they do on me. 

Today he’s in a hurry.  He was lollygagging this morning, doing his best to convince me to wait until Superman was over before we ventured to the church, and he’s not one bit happy because I said no.

That’s why he’s in the car with my sunglasses on. It’s his way of acting like he’s been waiting for hours, and would I please hurry up? 

He doesn’t have all day, and I’ve already broken the Mom rules.  First, I made him take a shower. Second, I made him wash his hair. Third, I said, “No way” to his sleeveless muscle man shirt. Not at church, thank you very much.

He’s in some kind of mood this morning. Dressed in his suit coat over his Kentucky Derby T-shirt, and saying, “I hot, Mom.”

“Well take off your suit coat. That’ll cool you off.” But he refuses.

So he takes out his cell phone (it’s the kind that flips open), and says, “Oh, hi. Mom a new car. Yeah, hot, I burneen cwispy.” He’s letting me know that if the air conditioning hadn’t died in my car, then he’d be able to ride to church without roasting. That makes two of us.

“You’re not a chicken, you know.”

“Yes I are.”

“No you are not.”

He shuts the phone, then flips it open again.

The phone doesn’t work – it’s a phone my cousin Joanie sent him in the mail and he likes to pretend like he’s talking on it. He likes it, and why wouldn’t he? Everyone else has a phone.  No reason he has to look like Charley Palmer, not when he can look like Joe Cool, and that includes a cell phone.

Charley is the cell phone fog horn. No matter what room he’s in, if someone sends me a text, he yells, “Testing (texting) on you cell phone. Or, “You phone beep you.” Then Mr. Nosey wants to know who it was, what they said, and was it a message from a girl?”

And when he thinks I just don’t get it? Whatever “it” is? He uses it to report Brad and me to one another. To call me and tell on his Dad, when Brad forgets to buy batteries for his CD player.  Or, to call his Dad and tell on me when I’ve made him turn his radio down because it’s waking the dead. 

And, lastly, to call his girlfriend even though she has another boyfriend. Technically, he knows there’s no one on the other end, but that doesn’t mean he can’t pretend.

That’s what’s so much fun about Charley.  He’s always up for a little pretending.

When he thinks we won’t do what ever it is that he wants, he takes out his trusty cell phone and tells his plan to who-ever-it-is on the other end.

Like this morning.

First, he made a call to inform who-ever-it-was that he was stopping at Wiegel’s on the way to church to get some gas and a coke for Alex and Hanna (two girls he likes a lot). Alex and Hanna have brought him Dr. Pepper to church in the past, and today Charley has decided to pay it forward.

“No worry, I get dere wite away,” he says, and flips the phone shut.

“Who ya talking to, son?”

“No business,” he says.

“Geeze, that was rude.”

“Warry, Mom. I pwetend. No wude.”

We approach the corner and I know what he’s thinking. Mom’s mad; there goes the trip to Wiegel’s.

Out comes the phone. “Mom, you phone winging.”

I pull out my Blackberry. “Hello, who is it?” I say.

“I Shawley Pama,” Charley says.

“Mom, no talk-a-phone. You dwiveen.”

Now here’s the tricky part. I make it a policy not to talk on the phone while I’m driving. Uh huh, tell that to the police officer who pulls up beside the car. Since he has his window down, I roll mine down too, and give him a shout-out. “I’m pretending,” I say, as if he would automatically get the picture, that I'm not really on the phone, but playing with my kid when I'm  supposed to be driving.

He gives me a look that can only mean – holster that phone. And I slide the phone into the jacket and he drives off.

“See?” Charley says, like, I told you so, and then he pulls out his flip phone again, and says, “I on da way. Helpin’ Mom faster way.” This is code for; I will pump your gas (faster way means he likes to watch the numbers go round and round).

It’s also code for; then I’ll just scoot into the store and grab the drinks I want and set them on the counter and the checker will ring them up before you even have your wallet out. You better hope you have enough to pay for all this.

Flip.  The phone goes back in his pocket. He grins at me. “I pwetend, Mom.”

Sure he is.

No use arguing. We can’t get anywhere without gas, so I pull into Weigel's. Fifteen dollars worth of gas later, two chocolate milks (for him), the cokes for Alex and Hanna, and of course nothing for me, and we’re rolling down the highway.

Flip.  The cell phone is out of his pocket. “Winger, winger, winger,” he says.

“DaddyBrad, Mom slow poke.”  The cell phone goes back in his pocket.

I get the message. Keep going the 40-mile an hour speed limit, and someone’s going to be late for choir practice.

“Go Mom, I hungwy here.”

“We’re not going out to eat until after church, not before.”

“Gweat. Dust gweat.”

Ten minutes later we’re pulling into the parking lot at church. I usually park up on the hill next to the entranceway to the sanctuary. But not today. Today I’m parked around back.

Charley hops out of the car and starts running.

“Bye Mom,” yells and his backside disappears through the door.

I open the door just in time to see him running up and down the stairs. Exasperated, he makes it to the sanctuary, then back down the stairs again, and out comes the cell phone. “Alex n' Hanna no here.”

I get it. The kid is on a mission, and it doesn’t matter whether Alex and Hanna arrive or not, there are cokes here, and they will be delivered, although it sure would help if he had someone to deliver them to.

He sits in the row across from where Alex and Hanna always sit. The choir enters the loft and he puts his hands up in the air, like, “Where are they?” and then slumps down in his seat.

Then just as soon as church starts, here they come, and there he goes, climbing over the poor people in his way to get to the end of the row so he can hand the bag with the colas to Hanna.

Hanna takes one of the cokes and passes it down the row to Alex, and then Charley delivers a note I’ve written. Perhaps it might be a good idea if they open the colas outside. They’ve been shaken up, and if they aren’t careful it could give a whole new meaning to the words, Let us spray.

Mission accomplished. He goes back to his seat, gives me the two thumbs up and takes out his phone to report to who-ever-it-is that operation cola is complete.

Church is coming to a close and he points to his stomach, indicating that he’s put had just about as much church as he can tolerate on an empty stomach.

I pat my stomach. He knows this sign language, because when it comes to lunch he does one of two things. He points to his stomach and says, “My belly’s growlin’” or, he pats his stomach and says, “I fullt.”

Finally. The closing hymn. And not a moment too soon. He’s rolling his eyes, leaning on the pew in front of him, and puts one hand on his hip. I half expect him to pull out his flip phone like he’s calling to let who-ever-will-listen know it’s almost time for lunch. Instead, he stretches his arm out in front of him and turns his wrist, like he’s checking the time.

Would it surprise you to know he doesn’t even wear a watch? 

Girls

Okay, so Charley and I are hanging out together this morning, and we start talking about school starting back up in about a month, and girls. Here's what C had to say:

Ladies Man

Here’s the heartbreaking thing. For us parents of adults with Down syndrome, our kids grow up. But they don’t grow out. Well, some don’t. I suppose there are some who don’t need the assistance of a caregiver to create their socialization.


What do I mean by growing out? I’m talking about growing out of themselves. Not spending every hour or every day alone, insulated. Being able to have a real social life, doing guy things, going out with girls, which is exactly what they want. But young men like my Charley can’t just get in the car and go hang out with his friends.


First, he attends a special needs class, and his friends can’t take off and hang out with each other either. Not without the adults in their lives creating “play dates.” That’s what they are called when they are little. But for the young adults who live the reality of DS every day, it's called inappropriate flirting. Just let him get in the vicinity of an attractive server at a restaurant, and he’s likely to blurt out something like, “Oh, He-llo!” or, “You purrty!” And then the rest of the evening is spent with him yelling, "I like you!" And, of course, there's the final word - "Call me!" 


People like Charley want to phone their peers and go on dates. But when they meet someone they like they have a built-in way of not getting the phone number. It's called forgetting to ask for it. Or when they do have a phone number and call the girl, they aren't able to verbalize what they are thinking. They just hold the phone and say, "What doin'" or, "Hi," and that's about the extent of the conversation. I've seen this happen before. 


And dating? Who picks up a date without a driver’s license? There’s nothing Charley would like more than to get himself a smooch but how’s he going to do that with his Mom (or Dad) driving the car? 


I’ve been trying to fix him up with girls who have Down syndrome for years.  I figure it will put him on a level playing field. But he won’t have any part of it. And why? Because he’s in denial about his Down syndrome.


One afternoon he heard me talking about him on the phone. I said the words “Down syndome.”


He stopped what he was doing and looked up.


“Huh? You say dat word?”


“All I said, was “Down syndrome.”


“Not me,” he said.


“You have Down syndrome, Charley.”


“FWEAK!” he said, and then crossed his arms, offended.


“Charley, there’s nothing wrong with having Down syndrome.”


“I NO have it,” he said.


“Don’t deny who you are, son. You are quite wonderful,” I said.


He grinned, and said, “Oh, kank-u.”


Brad took him swimming with the Down syndrome group later that evening. When he got home he said he’d met a girl.


“What’s her name?”


“Dat girl.”


“Did you get her phone number?”


“No.”


“How are you going to ask her out if you don’t have her number?”


“Mom, no date, dus fwents.”


I hate to say it, but he’s pining after another girl but she’s already got a boyfriend. Who among us didn’t go through the same thing when we were young? Broken hearts. The kid is in love. It sucks.


As I’m sitting here writing this, Charley is sitting on the couch listening to Trace Adkins, blasting us out of the living room.

Honky Tonk Badonkadonk…

Now Honey, you can't blame her

For what her mama gave her

It ain't right to hate her

For workin' that money-maker

Band shuts down at two

But we're hangin' out till three

We hate to see her go

But love to watch her leave

With that honky tonk badonkadonk

Keepin' perfect rhythm

Make ya wanna swing along

Got it goin' on

Like Donkey Kong

And whoo-wee

Shut my mouth, slap your grandma

There outta be a law

Get the Sheriff on the phone

Lord have mercy, how's she even get them britches on

With that honky tonk badonkadonk

(Ooh, that's what I'm talkin' bout right there, honey)

“I a ladies man!” he says.

“Watch it, son,” I say.

“I like it.” He says.

It’s one of his favorites. He’ll play it until he knows every word too. Over, and over, and over. And over again.

And to put it in Charleyverbiage, “I might squeam.”

http://www.cowboylyrics.com/lyrics/adkins-trace/honky-tonk-badonkadonk-15326.html#.UABLY47euB8

Charley's Interview