Saturday, November 15, 2014

Charley NFocus


Charley and Pam Brooks - No wonder he's smiling!
If you asked me what Charley's biggest wish is, I would have to say he wishes to be a part of. In a word, he wants to be connected. To be in an arena where everyone sees him as he is; a regular person. Not a man with Down syndrome, but a man. On his terms, yes. But, accepted just the way he is. If he could articulate it, I believe that's what he would say.

On Thursday, November 13th, in Louisville, Kentucky, he got that chance. Thanks to the gracious invitation of Pam Brooks (My former school chum) that was extended to my family, we were guests at her table along with other representatives from NFocus Magazine for a night of spectacular food and entertainment at the March of Dimes Signature Chef fundraiser.

All right, helicopter mom that I am, I admit to momentary visions of how he might (or might not) fit in. How would he handle the crowd? (They were expecting at least 600 attendees). What would he eat? (Bye bye hamburgers. French Fries be gone - Hello gourmet feast). What if he wanted a glass of wine? (He is of age, after all). What if he got so excited that he danced a little jig in the midst of all those business suits and cocktail dresses? (He tends to do that when he's happy). Who would he sit with? (Besides his hovering parents). Would he be lonely? Who would he talk to? Charley has been known to rise to the occasion before. I was hoping this would be one of those times.

And was it ever. Even with all the action offering plenty of distraction, I couldn’t help but focus in on that grin of his. Sampling the cuisine. Watching the live auction, doing a little dance with one of Pam's associates after the dinner. Lonely? Not in this crowd. One by one, people stopped by to speak to him. Pam kept him informed of what was going on and what was coming next.

There are words for that night. NElectric. NSupercharged. NDelicious. NFascinating. NBenevolent. NCluded.

One might think Charley had a wonderful time. He did, but it was so much more than that. Yes, he enjoyed the food and the auction. He had fun meeting Pam and her fabulous NFocus associates, and her husband Joe. He was thrilled with the Godzilla DVD Pam brought him and the cookie Nancy gave him. All that.

But later when his head hit the pillow, he was pensive. I know the look; I've seen it before. It's a look that overrides any words. I could see it in his eyes. They were filled with what Charley calls his "happy." That place where you don't have to adjust your lens because the picture is perfect. That place where people see you as you. That place where you can just be yourself. I suspect the NFocus associates were just being themselves too. They may have no idea what they did for my son, but Brad and I sure do. And Charley does too.

I hope NFocus raised more funds for the March of Dimes than they ever dreamed possible. I hope that somehow they know what a difference they make in the lives of others. They sure made a difference for my Charley. And there's only one word for that. NPriceless.

Wednesday, November 5, 2014

"My" Book

Okay, I didn't see this one coming.

Oh, how I underestimate that extra chromosome of his.
And while I’m at it, what gives me the right to assume he doesn't know what’s going on?

The fact is, he’s very aware. Maybe even more than I. It’s been a much anticipated event in our house, waiting for the book.

Here’s what happened…

I left for work yesterday morning and didn't arrive home until around 8:15 pm. In the meantime, the mail truck came, the box was opened, and the book unearthed. I arrived home to find that Brad had placed the book on the table under the light (thought he’d surprise me). Except for one thing; my phone was ringing and ringing. Every few minutes. It was Charley, telling me a box had arrived, and could he have it please?

When I got home the first thing he said to me was, “I want dat book.”

I walked over, picked it up, held it up and said, “Wow!” 
It’s the first time I’d seen it, and what a thrill.

“I want dat book,” he said again.

“Tell you what, honey, I’ll order you a book for yourself,” I said.

“I want dat one,” he said.

And that’s how the evening went; about every five minutes he let me know that was his book.

“It’s my book,” I said.

But was it? Whose book was it? Mine? His? Seems only fitting he should have the first book in the family, after all, it is a book about him.

I held the book up. “What does this say, Son?”

“My name.”

“Yes, that’s your name. It says Charley.”

He tried to take it out of my hand.

“It’s my book,” I said. I wrote it. I should have a copy of it.

He tugged at the book. “Mine.”

Finally, my mother, who was listening to this exchange on the other end of the phone heard him and said, “Buy him a book. I’ll pay for it.” Well duh. Why didn't I think of that?

So I placed the order on Amazon and said, “It’ll be here in about five days days.”

Now. You must understand that in the Down syndrome mind five days never comes. We can reason that it takes time for the mail to get here, but Charley? Not so much.

“I dat one,” he pointed to the book. 

Oh what the heck. I signed a message inside the front cover and handed it to him. He hugged it to his chest. And with that, he had a book and I didn't.

I thought that was the end of that. That’s what I get for thinking.

A short while later, I was lying on the bed, playing with my iPad, when who should appear at the door.

“Wead me my Charley story,” he said.

Huh?

“Wead it Mom.”

He pulled his iphone out of this pocket, placed it on the bed, turned on the recorder, opened the book and pointed to a page.

“See? Wead dis.”

I looked into those eyes of his and melted. Right there, all over the page. What I saw was much more than excitement. It was more of a knowing contentment that he mattered. He's always mattered, don't get me wrong, but this was different. This was validation.

He sat and listened as I read one of the stories about him. 
He laughed, and nodded his head, in total agreement. Many people can't laugh at themselves, but it's one of Charley's greatest gifts.

Who would have known he'd be this engaged? Who could have guessed he would understand on such a level? We’d talked about it. But, I had no idea.

When I was finished reading, he thanked me, then took his iPhone to the couch, plugged it in, and fell asleep listening to his “Charley stories.”

He’s so smart. He knows he can’t actually read the words on the page (some individuals with Down syndrome can read on that level, but Charley can't at this point), He can, however, listen.

 And just like that? Life with Charley: A Memoir of Down Syndrome Adoption morphed into an audio book. How about that? Even the publisher doesn't know. Some authors wait years for that privilege. But in my case? There’s a Charley in the house.

Life is good. He’s got his book.

And I'll have mine. It’ll be here in about five days.


***

Note: Life With Charley: A Memoir of Down Syndrome Adoption is available at: Amazon.com and http://www.barnesandnoble.com/w/life-with-charley-sherry-palmer/1120669779?ean=9781937365707

Saturday, October 18, 2014

IT'S IN THE SYSTEM



Charley using his library card
This post is dedicated to my friend Laura.

My idea of borrowing from the library:

·        Look at the books as they come across the desk. Read the jacket covers. Decide if I really want to read it (did I mention I work at the library?)

·        Occasionally check out a music CD to listen to during lunch.

·        Everything must be left at the library, lest it get lost in the black hole of the house. I cannot be trusted to bring them back.

Charley’s idea of borrowing from the library:

·        Inspect every DVD in the book drop (did I mention that he volunteers at the library, picking up books in the book drop on Mondays and Saturdays?)

·        Hold up every DVD and tell me whether he has it at home or not

·        Stand in the work room and wait for Shirley (that’s my coworker) to give him a Chug-a-lug chocolate milk as his reward for picking up the books.

·        Pick out his DVDs (he’s only allowed two because he hasn’t quite grasped the concept of borrowing yet)

·        Hide the DVDs under the couch when he gets home so he has a prayer of finding them again.

 
My idea of returning DVDs to the library:

·        Retrieve the book from my desk and check it in.
 
Charley’s idea of returning DVDs to the library:

·        Spend the better part of two days trying to convince me he doesn’t have the DVDs, and that he never checked them out

·        Put the empty Lion King DVD case in my backpack.  Keep the movie, return the worthless case (like I’m not going to notice)

·        Put the Pocahontas DVD case (with DVD inside) on the dining room table as if I can’t count.

Me: “You borrowed 2 DVDs, not one.

Him: “No, one.”

Me: No, 2.

Him: “Uh uh.”

Me: “Stop stalling.”

Him:  Glare. Stare. Fidget.

Me:  “Well then, unless you turn in ALL of the DVDs you borrowed, you can’t borrow any more.

Him:  Nose dive under couch, followed by looking at me with his hands in the air. “Abwadabwa.”

Me:  “Don't Abracadabra Me. I know it’s there.”

Him:  “Gone.”

Me:  “Guess you don’t want to keep that library card.” (Did I mention that Charley has a thing about cards? He collects them.)

Him: Nose dive number 2. 

Here’s the thing. He’s got stacks and stacks and stacks of DVDs stacked up around his TV. All within reach. It’s his system.

 He knows exactly where the Incredible Hulk is. Batman, Superman, he knows where they are. Spiderman . Men in Black. X-Men. Just say the word. But Lion King has disappeared. And where? You guessed it. The black hole.

I can’t get too mad at him. And why? Because he is just like me.

               And for a split second, I thought about my friend Laura. She visited one day shortly after I was injured, and we were working on our knitting projects. Because I had mobility issues, she was helping me look for a knitting needle. Otherwise, I’d have looked but pretended to be doing something else so she wouldn’t notice, but this particular time I outed myself.
               I knew I had a size 4 needle somewhere. But where? So we looked in the basket beside my knitting chair. Not there. We looked in the knitting needle box. Are you kidding me? Do I ever put anything back?
             We looked under the chair, behind the chair, and in the crevices. And then, Laura, who is more organized than the law allows looked at me with that blank look she gives me.
“It’s lost in the system,” I said.
She busted out laughing.
And laughing.
“The system?”
“Yes, the system.”
She laughed some more.
“I know where we could try,” I said. “Go out and look on the floor of the car behind the driver’s seat.”
Another blank, wide-eyed stare. She might have even mumbled something under her breath, I can’t remember.
She could look at me all she wanted to, but I know my system, and sure enough, there it was, the size 4 needle I needed.
She held it up. “On the floor of the car?”
I don’t remember either, if I tried to come up with an explanation.  What is, is what is, whatever what is will be, will be whatever what is…regardless.
I could have used Laura’s help this morning when Lion King went MIA.
I thought about fussing. I thought about cramming a donut in my mouth (Didn’t have any in the house, too bad). Instead, I said, “I’m telling Laura on you.”
And what do you know? Lion King came out of hiding and went right back into the case, into the backpack, and back to the Library.
On the way to the library, I had a little discussion about borrowing with Charley.
“You and I have to get organized, Son. What we need is a system.”
“A system?”
“Yep.”
“I got me system.”
“I know. I’ve seen the couch.”
“You got you system?” he said.
“Have you seen my knitting needles?”
“Nope.”
“My point exactly.”
He just grinned and said, “You big twoublt. I tellin’ Lauwa.”

 

Monday, September 1, 2014

When It Ain't Over



When you have a young man with Down syndrome in the family, you can think something's over all you want to. But it's only over till the next time.

You might think that one of the worst things about vacation is having to come home. And I'd be inclined to agree with you, but I don't. And why? Because there's a Charley in the house.

Week before last Brad, Charley, and I set out on our big adventure at the Wilderness in the Smokies, where we would stay at the Wyndham Resort (compliments of some wonderful folks in Brad's church).

I have to admit that I had no idea we lived just a stone's throw from such an awesome place. Once we were there though, I looked at Brad and said, "We're never leaving." We hadn't had a vacation since...wait a minute...had we ever had a vacation? I'm talking about the kind where you sleep as late as you want, eat whatever you want, and do whatever you want? Yeah...that kind.

It was a week of total luxury.

But you know what they say about all good things, and it ended way too soon.

Before leaving, Charley went to the front desk and asked if he could keep the room key. So the nice man behind the desk decoded it and let Charley have it. And that was the end if that.

Oh yeah?

On our way home from church Sunday, Charley said, "Me and Jordan go twip."

"You and Jordan?"

"Yep."

"Where are you going?"

He pulled the room key out of his pocket.

"I got dis," he said.

Then he held up the map.

Uh oh.

"Where's Jordan going to stay?"

"My woom."

Uh oh.

"Does Jordan know about it?"

He looked at me, like, what-does-she-need-to-know-for?

Enough bantering. Time to drop the bomb.

"Son, you can't just go on a trip with a girl."

"But I got da key."

"You may have the key, but you don't have the girl. And...you don't have a wedding ring."

He got quiet, flipping the key back and forth in his hand.

"A wing?"

"Yes, a ring. You can't take a girl on a trip until you are married."

More silence.

"Have you asked Jordan's fiancé if you can take her on a trip?"

He glared at me.

"Maybe you'd better invite him to go too."

That ended the conversation. Until...last night.

Brad and I were in the living room when who should appear in the doorway carrying two large tote bags.


"What's in the bags?" I said.

"My movies."

"Where are you going?" Brad said.

"I go my twip."

Brad and I looked at each other.

Oh no.

Not this again...

...and again...

In a word...It ain't over when it's over. 

Wednesday, August 13, 2014

Channel Cat




This may look like an ordinary cat. I assure you, it isn't.

This is a channel-cat.

This is a tell-Charley-I-said-so cat.

Yep...Gizmo's the name...Charley's the game.

You see, there are those times when Charley pushes me to my limit. And, yes, when I push him to his limit.

This means we enter a no-talking zone. I'm not speaking to him, and he's not speaking to me. Brad is at work, so there is no buffer. No one to pawn each other off on.

That's where Gizmo comes in.

We each tell him what we want the other to hear. It goes like this...

Gizmo, tell Charley to take his shower.

Gizmo, tell Mom I'm busy here. I'm watchin' my TV.

Gizmo, tell Charley he can watch TV after his shower.

Gizmo, tell Mom I said no.

Gizmo, tell Charley to get in the shower or else I'm taking his clicker. And...tell him to use soap!

And Gizmo goes back and forth, between the two of us, channeling the message. That's not so unusual though, seeing show Gizmo's always a bit wired.

Even so, Poor Gizmo. He's a ping pong ball with whiskers. Boing. Boing. Until he collapses on the floor as if to say, "Enough, already."

You'd think he'd have learned the art of hiding behind the couch by now. But he just keeps coming back for more.

Fortunately, Charley and I haven't been in the no-speak zone for a while. But today was one of those days. And Gizmo offered himself up as the channel cat.

Some days this channeling thing works better than others.

This afternoon Charley came out of his room. I had the TV on. He said, "Mom, what channel you on?"

I said, "I'm on the Gizmo network."

Guess Charley thought I was getting ready to tell Gizmo to tell him to do something I wanted him to do, because he leaned over and said, "Gizmo, tell Mom not now."


Friday, August 8, 2014

Big Dreamers



This is the face of a super sweet young lady. Charley knows it, too. Every Sunday he says, "Tiffanie comin' church!"

I tell him that sometimes Tiffanie will be there and sometimes not. She has a job that doesn't always let us borrow her on Sunday mornings.

That doesn't stop him from running to the car, anticipating, hoping, talking about her on the way there, then bolting from the car to find her once we land in the parking lot.

I do my best to prepare him, just in case she's working.
"Don't get your hopes up, Son. She might not be here."

He says, "Yes eyare. I told her." Meaning, Tiffanie is to be at church. She is NOT to be at work. Her real job is to sit with me.

And why? Because when Tiffanie is there, he feels like a somebody.

When Tiffanie is there, he is not odd man out. Someone is there for him. Someone enjoys him. Someone puts him on equal footing.

We all need that, don't we? To be around those who make us feel like somebody. Those who never makes us feel less.

Some people such as Tiffanie (and Charley's other friend, Jordan), know how to reach across the boundaries and into the world of Down syndrome. In doing so, crossing that line pulls Charley into the parallel universe of "normal." A world that says, I'm just like you.

Most people Tiffanie's age wouldn't give Charley a second thought. Most people would go on their way, worrying about what's next for them. Most might say to themselves...Who cares if the Charley's of this world have something to look forward to? Not my problem. Dream on, big dreamer, I'm in college now. I've arrived. 

But here's the thing. Tiffanie doesn't see Charley as a problem. And she includes him in her list of important things to do. She views him as friend. Charley knows it. And to him, it's everything.

How is it that some people care more about the Charley's of this world than they do about their own agenda? I wish I could clone Tiffanie (and Jordan), and put them everywhere. How wonderful that would be for the special needs people in our communities. How less isolated. How less lonely. How less different.

Study this face. This is a beautiful rare young woman. This is the face of one who sees past developmental challenges and into the heart. That's what makes the heart beat, you know. It's not what you do, how much you have, how physically attractive you are, or how much money you make that makes Charley gush. It's how you make him feel.

She is off to college in a couple of weeks, full of hopes and dreams for the future. Agendas, studies, classes, making new friends. Life is fixing to change for Tiffanie.

Now look at the face sitting beside her. This is the face of a dreamer. He may not be able to process the future, but that doesn't mean he doesn't have hopes. And dreams. Big dreams.

Today is Sunday, and this morning he's dreaming they'll come face to face.

Of course, a trip to the Chinese buffet after church with this smiling face across the table wouldn't hurt his feelings either.

Ah...such is the stuff dreams are made of.

Wednesday, April 2, 2014

Puppy Love



This may not look like a puppy to you, but I assure you it is, and it’s lovesick.

Charley was quite pleased with himself when he asked Jordan to the movies. (Never mind that she already has a boyfriend. That's him, Austin - the one in the blue shirt. Charley may not know it, but Austin is a class act all the way - lending his girlfriend to my son, so he can have a date too, and God, please rain favor on him for that.)

Here’s how Charley put it…

“I, me, Jordan, movies, eat, fun.”

And that’s what happened. Jordan picked him up in her car, and off to the movies they went.

According to Charley, he had a “GWEAT” time. The next morning he came out of his bedroom, and sat beside me on the couch. I could tell something was bothering him, but what?

“What’s up, Son?” I said.

“My bwoke is heart.”

“Your heart is broken?”

"Yeah."

“By who?”

 He looked at me, like you know who. Duh.

“What did she do to break your heart?”

He sighed a gut-wrenched lung clearing exasperated, well of a sigh.  

“I love her much, Mom,” he said.

“Who? Jordan?”

“Yeah, I love her much.”

Then, he said, “I MAD!”

“Why? Didn’t you have fun?”

“Yes.”

“Then why are you mad?”

He looked at me kind of weepy.  “She bwought me home.”

Ruff.

Thursday, February 6, 2014

Is there a Nurse...I Mean, a Doctor in the House?



Sometimes there's not enough Kleenex in the world. You know what I mean...when your nose is feeling like:

It's fixing to fall off
It's fixing to blow
You wish it would fall off
All of the above

But then. A blond haired, blue-eyed nurse tells you to bare your arm, she's going to take your blood pressure, totally unaware that sometimes this is all it takes to get your blood pumping, and miracle cure, someone is feeling better (at least for the moment), and what was dying on the examining table is suddenly sitting wide-eyed. Imagine that.

I need to take your blood pressure, she says.

The shirt is ripped off the body like David Beckham’s in the house.
See my muscle shirt?

Nice shirt, she says.

The blood pressure cuff is wrapped around the arm.

Relax your arm.

I da Hulk, he says.

I do believe he's turning green, I say.

He shoots me a look, like, shut up, shut, up, already.

The nurse is pumping the thingy that squeezes the arm.

She looks down. He looks at me like, "Owe!" He looks at her, like, “ata-girl.”

Wow, you did great, she says.

The Doctor will be in to see you soon. The door closes.

He watches the door, hoping to catch one more glimpse of the pretty "blondt" nurse, and who can blame him?

The door opens and the Doctor walks in. He introduces himself.

The shoulders that were so proud moments ago deflate like a punctured balloon.

We're dying again.

Open your mouth. Say ahh.

There's a tongue depressor in the mouth.

How long has this been going on?

Well, it was there, then it went away, then it came back again about two minutes ago when the nurse left. The doctor smiles.
So, he’s not so impressed with me? The doctor says.

Sorry, Doc, you’re the wrong gender.

Now, Charles, I'm going to look in your ears. He pokes a thingy in the ear.

Are there any brains in there, Doctor?

The patient scowls.

The diagnosis: bronchitis.
I'll write a prescription, he says. You can pick it up on your way out.

Could you write a prescription for stubbornness while you're at it?

The Dr. smiles again. The patient scowls again.

The door closes. The patient is fading. Oh, ooooh, I sick, Mom.

I pat his hand. You will be better soon, I promise.

No not, I SICK. Meaning, can I stay home today?

Well then, I guess you won't be able to see that nurse on your way out.

Presto! The shoes are on, the jacket is on, and the muscle man is out the door.

Bye Charley, says the nurse.

Bye, Purty.

I look at this child of mine. This funny little Hulk. On Friday he is supposed to see a heart specialist (it's common to have routine tests performed on individuals who take the kind of medicine he takes).

He'll go to the appointment, God willing, if he's feeling better.

The waiting room is filled. Not a seat to spare. On the way out my young man says hi to every last person in the room.

Someone sneezes.
You better soon, I promise...he says, waving.

Sometimes there's just not enough Charley in the world. And I promise you, there's not a thing wrong with his heart.

Friday, January 24, 2014

What Matters...



In the words of DaddyBrad…

My Blackburn College friend Bruce Truitt has announced that his beloved Son Cody is brain dead. They have decided to donate his organs in the next few days. Prayers go out to his family during this critical time. I did not know Cody, but in his honor let us stop worrying about anything and just love our children and recognize the gifts that they are. Oh yes, we worry about their grades, their choices, their futures. But that is all piffle really. What matters is that they know they are loved. And that when they walk into a room, our eyes brighten and there is nobody more important than they are to us. There is no greater honor in this life than to be a parent. Prayers today for the extended Truitt family And Blessings to all. 

And Charley, your Dad loves you so very much.

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.