He Hopes You Dance

It may have looked like a Captain D’s to you, but what did it look like to Charley?

I never saw this coming…

We, Charley and me, had Mom and Charley date night. That means Brad was busy, so Charley and I were on our own. We bantered about where to eat and settled on fish. Ten minutes later we found ourselves in Captain D’s. 

“Hello, purty,” he said to the girl behind the counter.

She was nice to him, but didn’t encourage the attention. Said she’d bring our food to the table, so we made our way to the dining area and got our drinks, sauces, lemon, flatware. The essentials.

I don’t know about your Captain D’s, but the one here in Knoxville down the street from us plays great radio. Always something to bebop to.

So we sat there and waited. And bebopped. And waited. And there she came, carrying our meals.

We ate a bit, and bebopped. Yes, while eating.

The next thing I know is, I was squirting lemon on my broccoli when Charley looks up and says, “Watch my food, Mom.”

I glanced up. “Where are you going?” I’m thinking the restroom. That’s what I get for thinking.

He checked with me one last time. “Watch my food. Ok?”

“Okay.”

Up he stood, and headed over to “Purty” girl.  “Dance with me?” he asked.

“I’m not a good dancer,” she said.

He held his hand out. “Come on, Purty.”

She shook her head. “Nope. Sorry.”

He turned to another worker. “You dance with me?”

“I can’t,” she said. “I’m working.”

He slapped his hands to the sides of his legs and let out a big sigh, like, what does a guy have to do to get a dance around here?

Believe me, as his Mom, I wanted to intervene. I have a tendency to want to squash that spontaneous part of him that might be considered inappropriate. Instead, I allowed him to be himself.

The worker looked at me. “It may look like a Captain D’s to you, but it looks like a dance floor to him,” I said.

About that time the manager came out from behind the counter. 

“I have this dance?” he said.

I was just sure she was going to embarrass him. Instead, she said, with no hesitation, “Sure!”

And with that, they twirled around the restaurant.

Like I said, it may look like a Captain D’s to you, but what I saw was Captain DS. That stands for Captain Down Syndrome.

Now before you think I’m making fun of him, or being flippant about his Down syndrome. I assure you, it’s quite the contrary.

Thanks to the manager, I had the privilege of seeing a young man who looked a little taller on his way out of the restaurant than when he entered. A man who quick-stepped his way to the car. A young man who slid into the car seat,  turned to me, and said, “See?” Like, see Mom? If you just believe in yourself, if you just hang in there, good things can and do happen. 

He’s right. If you know anything about people with Down syndrome, then you know they don’t give up. They find a way. They live with a zest like every floor is a dance floor. And as far as I’m concerned, it’s a great example for all of us.

What a fantastic reminder of the wonder of that extra chromosome, to witness a dance in Captain D’s during Down syndrome Awareness Month.

When I think of the things I’ve learned from this supposedly challenged son of mine, I’m humbled. 

Dance then, you who are glued to your seats. You who are locked away in the confines of your busy-ness. When you least expect it, someone, somewhere, might ask you to dance. My hope for you is that you take the hand of the one reaching out, and that you will hear the music. With your whole heart. 

And, yes, with your feet.

Parents of Kids With Down Syndrome Share What They Wish You Knew

Nice Surprise this Morning to find out Charley is included in this article from the Huffington Post:
Parents-of-kids-with-down-syndrome-what-they-wish-you-knew

If the pictures of these individuals don't melt your heart, then don't blame me!

It's a great day to spread some Down Syndrome Awareness. Brad and I are so proud of our Charley...

Once again, here's the link:

Parents-of-kids-with-down-syndrome-what-they-wish-you-knew

Something Awesome...Angels in Disguise

Day 20 of Down Syndrome Awareness Month (Something Awesome). #IDSC #Downsyndromeawareness 

Perhaps you've heard about Angels in Disguise...They are the ones who create Down syndrome Awareness by doing so many good things. One of those good things is this great poster they created of Charley.

You can learn more about this fantastic organization and see more of their creations by clicking on this link: Angels In Disguise. You won't believe the precious photos. Believe me, their enthusiasm is contagious...

I can't think of a better way to celebrate (something awesome) than to celebrate Angels in Disguise today.

Thanks Angels in Disguise!

Life With Charley Giveaway

Shout out to Pam Brooks and NFocus ... I love you my friends!

So much to be grateful for today. When I look into Charley's eyes, I know I am more blessed than I deserve. 

In celebration of Down Syndrome Awareness Month, and to honor Pam Brooks and our friends at NFocus Louisville, we are pleased to announce this giveaway.

If you haven't become acquainted yet with NFocus Louisville yet, why not check out this wonderful organization of givers who work tirelessly to make life better for others? Brad, Charley​, and I are proud to call them our friends. You will be too. 

Entry-Form

For the First Time

Waving to the kids down the street...

Two boys knocked on our door last week.

“Do you have any work we can do?” they asked.

Charley stood on the stoop and sized them up. He’d seen these boys before. They are part of the neighborhood group that plays basketball a few doors down. The group that laughs and runs and throws the ball with Charley, the “Down syndrome” guy watching from the doorway. Knowing he wants to play, but rarely asking him to join. “You can’t just invite yourself,” I tell him. This makes no sense to Charley.

Helicopter parent. That’s me. I could and probably should just let him go, grab a basketball, and strut his stuff. But somehow, I can’t stomach the thought that they might snub him and hurt his feelings. They look to be around middle school age.

“What kind of work?” I asked, thinking of all the nerve. You can’t ask Charley to play, but you can ask me for work.

“Anything,” the boys said, proceeding to tell me they were saving up to go to camp.

I thought about this. Might be good for Charley to see the neighborhood kids taking the initiative to look for work and pay their own way. Might rub off on him.

On the other hand, it might be good for the neighborhood kids to interact a little with him, that “down syndrome” guy who lives on their street.

“I do have a project, but it’s a bear,” I said. “Think you’re up to it?”

“Ok.”

“And I can pay you, but not a lot.”

“That’s okay.”

We stood there a few minutes longer chatting about their school, exchanging names.

“All right then, come over around 10:00 the morning of Labor Day, and we’ll have a project for you.

Now here’s the thing. I hadn’t forgotten about these boys. But they weren’t exactly the first thing I thought of when I got out of bed this morning. Nor did I expect them to show up at 8:00 a.m. It’s a holiday. I slept in. First cup of coffee. You know how it is. And just about the time you think about jumping into the shower, ringy dingy.

Charley is like the doorbell police.

“Whozit?” he says.

“It’s us, we’re here to work.”

Charley looked at Brad and me. “We’re here to work,” he said. Never let it be said that he was about to let those boys work in his house. Not unless he was in the thick of it.

He opened the door and invited the boys in.

“You sure this is okay with your Mom?” I asked.

“We don’t have a Mom,” one of the boys said. “We haven’t seen her for years. She walked out on us. We live with our Grandma.”

I could feel Charley’s eyes on me like he was seeing me for the first time. He put his arm around my shoulder. “My mom,” he said, under his breath.

I explained that the garage was more than a one day job, but that this was their lucky day. “We’re cleaning the closets today.”

“Sounds good,” one of the boys said.

“You haven’t seen the closets yet,” I said.

“How bad can it be?” The other boy said.

“You don’t understand,” I said. “My mom has given me bags and bags of her clothes. We have to go through them and hang them up.”

Brad and I headed back to the bedroom and opened his closet door. 

I saw the boys exchange glances. Yep. It could be bad.

Brad looked at the closet. Not that he doesn't see it every day, but it was almost as if he was seeing it for the first time. "Yikes."

“Let the digging begin,” I said.

We each had a job.

The boys pulled things out of the closet.

Charley stuffed bags and boxes full of clothes for the clothes closet at church. 

Out of the closet and into the car...

Brad cleared the racks for clothes to be hung.

I made the decisions. Brad would override them. Then he’d make decisions and I would override them. The boys scratched their heads. Charley rolled his eyes.

About an hour later, The boys downed a bottled water while Charley crossed his arms and leaned against the door frame.

“Whew!” one of the boys said.

“Glad that’s done,” the other boy said.

“That’s the first closet,” I said. “One closet down, one to go.”

The boys exchanged glances again.

Charley opened my closet door. He put his hand on his hips. “Mommy a mess,” he said to the boys.

"Mom's closet a mess..."

“That’s a lot of stuff,” one of the boys said.

“This could take hours,” the other boy said.

“That’s why they call it Labor Day,” I smiled.

“That’s my mom,” Charley said, patting me on the back.

Closet number two was different from closet number one. And why not? A woman’s closet is different than a man’s. I had to try on each piece of clothing, hold it up, and assess whether it was to stay or go, while the boys goofed off with Charley. Trying on scarves, putting boxes over their heads, comparing cell phones. Whooping it up. There comes a time when you no longer hand items to the person across the room. You launch it and hope it doesn’t take the ceiling fan down in the process. 

About a half hour into this fiasco, Brad reached his limit of letting me take my time, and into the closet he went. Flinging hangers around. Dropping things. He was ready to throw it all out. 

At one point I looked up and there were three of us in the bedroom. Charley, Brad, and me. And where were the boys? Kicked back in our recliners in the living room. I had to laugh.

“We’re almost done,” I said.

The boys went back to the bedroom to finish the job. 

All four guys in the bedroom. Having their way with my closet.  I could have used a box over my head, I can tell you that. I thought about marching back to the room and controlling the situation. Instead, I assumed the position in on the couch and waited them out.

About 20 minutes later, they emerged. “Done,” they announced.

We told the boys earlier that we would have to pay them later today, to which they agreed, but we thought it best to remind them.

“We don’t have any money on us at the moment,” Brad said. Before he could reiterate that he would stop by their house and pay them later, Charley reached into his pocket, pulled out a dollar, and handed it to one of the boys. “Good job,” he said.

The boy looked at the dollar, like surely this isn’t all we’re getting paid.

He looked at me.

“We’ll stop over at your house later after we’ve been to the bank,” I said.

He started to hand the dollar back to Charley. “You need to accept that dollar,” I told him.

The boy stuck the dollar in his pocket. "Thanks man," he said.

“Charley, do you have a dollar for the other boy?”

“No, that’s all,” he said, standing a little taller, with a big grin on his face. I could see he was proud to be giving that boy his last dollar.

You can't buy a priceless moment like that

You can’t buy a priceless moment like that.

Here was a boy I thought could role model a good work ethic for Charley, and he did.

But just when you think you’ve got it all neatly wrapped, you find a little gift you never expected. Because here was my supposedly special needs son, role modeling generosity for him.

The expression on the boy’s face said it all. He didn’t look at him like that “Down syndrome” guy.  He looked at him with respect.

Like he was seeing Charley for the first time.

Delivering money to the boys at their house

*****

Bio:  Sherry Palmer is the author of “Life With Charley: A Memoir of Down Syndrome Adoption.” You can find it at: Life with Charley

Please visit Charley on Facebook at: Life With Charley - And Down Syndrome

Thank you!

How My Son Fixed A Hotel Problem that I Couldn't

Photo, courtesy of Angels in Disguise. Look for the link on this site. You will love it!

This is the face of a leader. 

While there are some in the world who might think of a person with Down syndrome as marginal, let me assure you, that’s a misnomer. Even so, I think it’s safe to say in general, people would not consider a person with Down to be a leader.

What exactly is a leader, anyway? I believe a leader is a thinker. A problem solver. A decision maker. Someone who doesn't wait around for others to make things happen. Things happen because the leader makes them happen. Not by railroading others, or demanding, or coercing. But, by facing the giants. 

By giants, I mean facing those things that seem insurmountable. What may seem impossible to some seems a matter of course to a leader. When it comes down to it, a leader sees the need, signs up for the challenge, and then gathers the team to get it done. 

A leader sees the abilities in others, calls them to the task, and then gets out of the way and allows them to do it. 

A leader inspires others. Not with their elevated sense of self, but by their sense of seeing what's possible and elevating others. A leader is fearless.

Sometimes I forget what a leader Charley is. How he kicks his Down syndrome out of the way when facing his giants. How he summons that extra chromosome like a sword, slaying the obstacles in his path. And I saw it in action first-hand this morning. 

Here's what happened... 

We'd been staying at a hotel in Louisville for three days while visiting our families. It came time to leave and I told Charley I would go sign out while he finished packing. If you know anything about that twenty-first chromosome called Down syndrome, then you know what creatures of habit they are. Routine-oriented all the way. 

As far as Charley is concerned, part of the routine of staying in a hotel is using the luggage cart to unload and re-load the car. 

When we arrived, the luggage cart was available. But when we went to check out, all the carts were in use. 

“Gweat,” he said, slapping his palms to his thighs. “No carts.” (Can’t say I blamed him. I sure wasn’t carrying all our junk to the car.)

"Sorry honey," I said. "We'll just have to wait till someone brings one back. Then we can grab it." With that, I sat down on one of the chairs and waited. And waited, while he shifted from foot to foot. Was I to stop at nothing? First, no luggage cart, then trying to bore him to death with waiting?

He looked at me, like, see ya, and headed back to the room. I figured he was going to wait there. I figured wrong. 

About three minutes later here came Charley, into the lobby carrying my hanging clothes, three bags, his swimming fins, goggles, and my makeup case. Following close behind him was a tall, husky man carrying my suitcase and a Charley’s backpack. Behind him was another man. He was carrying our cube of Coke Zeroes, my journal, some books, and a box of snacks we just had to have for our trip.

"Dis way," Charley said, pointing. The men followed. Forgive me, but my mouth dropped open.  

Here was this little guy (Charley), maybe all of 5 feet, directing these two husky six-feet or so men, and they headed outside. "Dat's my Mom," he said to the men, as they went by. "Deese my fwents, Mom."  

The men nodded at me and said, "Hiya Mom, nice to meet you." 

I don't how else to say this, but I could have dropped and rolled right there. You've got to be kidding me. 

There was only one thing left to do; follow them to the car and grovel, followed by some serious apologizing. 

"Did he con you into carrying our luggage?" I asked. 

"Not exactly," one man said. "He said he needed help, so we helped." (I could just envision Charley in the hallway of the hotel, flagging down people on their way to the lobby; “Need help here,” and pointing to the room where the mountain of luggage waited.) 

"Kanks guys," Charley said, and slapped them a high five as the three of them headed back into the hotel.  

I pulled the car around to the entrance of the hotel, thinking it would be easier for Charley and me to get the rest of our stuff. 

Um, did I say Charley and me?  

Scratch that. Because the next thing I know, Charley's emerging from the hotel with a woman following close behind, and she happened to be carrying what was left of the case of bottled waters we had brought with us. Into the back of the van it went.  

He turned and grinned at me. “See?”

Again, my chin nearly hit the ground. 

"Charley, you just can't go asking people to do things like this," I scolded. 

"Welax Mom, I got dis." 

He sure did. 

Before I knew it, the car was completely loaded, and there wasn't a luggage cart in sight. 

Now. You may think this was rude. You may think it invasive. You might even consider it demanding and inappropriate. And I suppose by most standards, it was. But I couldn't help smiling at what a problem solver my supposedly "challenged" son is. There I was, resigned to sit and wait until a luggage cart showed up; while he was busy taking care of the challenge at hand. Facing the giants.

A few minutes later we met my sister for breakfast. When we went to leave, Charley sat down in the waiting area while we paid the bill. He wasn't sitting there very long when a man approached the door pushing a stroller with a small child. I saw the man, and the waiting area filled with people. I also saw the only person who jumped up and raced to hold the door open. It was Charley.  

That was a moment of clarity for me. It wasn't that Charley was trying to con those travelers at the hotel into doing work for him. He simply needed help. He had a task at hand that seemed too much for one person, and he set about gathering his team. To him, that seemed logical. And, bless him, he didn't act like me. Not once did he issue an apology for inconveniencing them. To him, people should help people. And that's just the way it is. 

When I think of all the leadership positions I've had over the years, it makes sense. Every good leader understands team work. They also understand the concept of paying it forward. (Apparently, so does Charley). You help me, and I'll either help you, or I'll help someone else when the situation presents itself.  

It's a simple concept, really, this you help me and I'll help you mentality. And if it’s so simple, then why are we so surprised when a supposedly simple person figures it out? 

I'm embarrassed at how often I underestimate him. How little I still know about that extra chromosome called Down syndrome. But I'm equally impressed at the things he teaches me. 

Does this mean I'll recruit travelers to help me with my luggage when he isn't around? Probably not. Does it mean I won't fuss at him when he sets out recruiting his team, especially when it’s a team he’s never even met? Probably not. 

What it does mean is that I can see him in a new light; that of a person who faces his giants, whether they are people or challenges. 

It also means that when he's faced with those challenges, he's a thinker. He finds a way.

As a mother of a special needs adult, my whole life has been about facing the giants… 

• The massive preconceived notions of that extra chromosome and all the challenges that come with it. 

• The extensive health issues that often accompany Down syndrome. 

• The wide schisms that so often cause those roadblocks in his social development.  

Yes, life has its hurdles. But sometimes it takes an extra chromosome to show us all how to take a leap. 

When I think about it, the world may crumble around us, but the one left standing will be the one who doesn't cower just because the situation seems bigger than he is. 

You’ll know him when you see him. Just follow the leader. 

Sherry Palmer is the Author of Life With Charley: A Memoir of Down Syndrome Adoption. Available at: Life With Charley

Thanks for visiting!

Please visit Charley on Facebook at: Life With Charley - And Down Syndrome

Angels in Disguise

In my book, Life With Charley: A Memoir of Down Syndrome, I have a chapter where I talk about angels. In the chapter, titled "Pwomp and Circumstance," we are shopping for a suit for Charley to wear to the prom. Brad and I had little money to spend, so we found ourselves at Goodwill looking around. Out of nowhere, a man approaches and starts holding up clothing items for Charley to try. At the end of this post, I will include a portion of the chapter...

I've been thinking about Angels lately, and how they touch us. Angels kind of come out of nowhere, to tap us on the shoulder and remind us that life is precious. 

I've always thought of people with Down syndrome to special angels. They touch us in ways other people cannot. 

These are some of the fantastic folks from Angels in Disguise. 

Just to show you what kind of people they are...

Charley and I contacted them and let them know we were in Louisville. My mother was in the hospital, and we were in need of some serious cheering up. Before we knew it, we were having breakfast together, and Charley had a slew of new friends. 

Later, when Charley put his head on the pillow in the hotel room, he said, "Mom, I like my more fwents."

I said, "How could you not?" 

He wasn't alone. I like them too. Charley knows who likes him and who doesn't. He knows who tolerates him and who wants to be his friend. 

We found a restaurant full of friends that day.

Today we are celebrating our new friends, by posting some photos and adding their Angels in Disguise link to our sidebar. Please give them a visit, won't you? This is a fabulous group of people who celebrate the gift of Down syndrome. 

Thanks Angels in Disguise, for making us feel so welcome...you made Charley very happy! And well, you know the drill...when Mama's happy, everybody's happy!

As promised, here is an excerpt from Life with Charley. 

Charley’s Angel 

You know how some things keep coming back to you long after they’ve happened? That’s what happened to me, and I’ve played it over and over in my mind. I thought I was hearing things when Jordan said she’d been the one to ask Charley to the prom. “But Jordan, you can go with anyone,” I’d said to her. “I don’t want to go with anyone,” she’d said. 

Oh, me of little faith. How could I have doubted him? What gives me the right to assume he can’t get a date just because he has DS? Why wouldn’t someone be thrilled to be with him? He’s the most fun person I know. Apparently, Jordan thought so too. 

It’s been nearly six months since that day. Since Jordan asked him to her junior prom. Since she became his reason to breathe. And now, here we are, just three weeks from the big day. But first we have to make it through spring break, and I can’t think of a better way than to take him shopping for a tuxedo. Problem is, we can’t afford one. There’s a Goodwill store down the road, and I’ve seen some suits there, so off we go. As his luck would have it, there are no tuxes. As my luck would have it, Charley doesn’t care if it’s a tux or not. 

Brad’s at work this morning, unable to join us for this outing, but that’s okay. He’s elected to take Charley shoe shopping later in the week. Meanwhile, Charley and I are standing at the coat rack in the back of the store. “I don’t know, Son, you’ll just have to try them all.” 

He tries on three or four, but nothing works, when out of nowhere there’s a man standing next to us. He’s a tall man, well over six feet I’m sure, and he’s dressed in khakis and a polo shirt. I have no idea where he came from, but there he is, picking items off the rack, though barely looking at them. I notice he’s watching Charley. 

“I go pwomp,” Charley says to the man, like he’s known him for years. “Oh?” “Yeah. Me, Jordan.”

I tell the man Charley’s looking for a coat to wear to the prom.

The man takes a blazer off the rack and hands it to me. “Have him try this one,” he says. 

Charley puts it on but the sleeves come down past his hands. The man hands us another. Then another. They are all too long. Until the last one. It turns out to be Charley’s size but, oops, there’s a skirt with it. 

“Oh for pity’s sake, it’s a girl’s suit,” I say to Charley. 

“I like it,” he says, and sure enough it’s a perfect fit. 

The man says, “Just don’t tell anyone and they’ll never know.”

The next thing I know the man is helping us look for a shirt and tie, and Charley is all set with a “tussado” for the prom. 

“I like him,” Charley says. “Tell the man thank you.” Charley says, “Can I keep him?” 

I look at Charley for a split second. “He’s not a puppy.” The two of us laugh, but when I turn my head back so see the man’s reaction, he’s gone. 

“Where’d he go?” I ask Charley. Charley shrugs his shoulders. “I no know. Wheh is he?”

“Son, tell me the truth. There was a man here, just a second ago. Right?”

***

This is where I’ll stop for now. If you want to know what happens you’ll need to read the book. You can find it here:

Life With Charley

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