Hoops For Hope; Because everyone can use a little hope

Thank you, Miss Gerry

When Charley woke up this morning, he thought it would be a typical Saturday with Dad (Pastor at New Hope Presbyterian Church); hanging out at the church while Brad finishes preparations for Sunday morning worship.

He was wrong.

It’s one of our favorite things to do; making him think he’s doing one thing, then surprising him with something else.

And that’s what happened. He did his usual walk through the den, hugged both of us, then said, “Dad, you and me today?”

Brad and I grinned at each other. “No, you’ve got a surprise coming to you.”

Little did he know that he’d not only be spending the day with one of his favorite people, (Miss Gerry), he’d be participating in the annual Hoops For Hope Benefit for the DSAG (Down Syndrome Awareness Group of East Tennessee).

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

Thank you, Coach!

Can Charley help it if he’s star-struck? Not everyone gets a new t-shirt signed by the team. And to my chagrin that shirt will eventually need to be washed, but I also know it will have to be surgically remove him first. 

And why wouldn’t he wear it to death? Every time he puts it on it’s a reminder that for a day, he was part of a magical experience called The University of Tennessee. 

It’s 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 part of a team.

It’s about those who see him as a person, not an extra chromosome. And yes, those who are willing to step out of themselves in order to become part of his team as well. (I don't know about you, but the thought that our university team takes time to spend the day with our special needs community gives me hope.)

Thank you, UT athletes. Just thank you.

And then there’s the flirting. And why not? what good is a cheerleader if you can’t flirt a little? Strutting your stuff in front of what he calls his “purty girls” is half the fun. I shamelessly admit that things like this make me swell with pride.

But I’m also humbled. 

My son had the time of his life, assuming his place with the athletes who’s job it is to win trophies and bring recognition for their school.

But not in this case. This time the athletes turned the focus on the participants; people, like Charley, who have the overwhelming task of jumping through hoops in order to be recognized, not for their disabilities, but for their abilities. Today, everybody stood on the court of the abled. There’s a reason they call it Hoops for Hope.

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 efforts of DSAG (directed by Kelly Johnson) and the UT players who recognize that life isn’t always about them. It’s about confidence-building, and cheering for others. It’s about creating opportunities for others by paying it forward. It’s about standing back and allowing others to take their best shot.

Standing on the court of the abled

Charley, of course, doesn’t know this. All he knows is that he was slapped high-fives by the coaches and athletes, was given a 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 guy.” For a moment he just like everybody else. That’s all he wants, you know.

And for a moment, he was. 

There's a smile for this sort of thing...

***

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

Please visit Charley's Facebook page at: Life With Charley - And Down Syndrome


Make sure to watch the  WBIR Coverage - Hoops for Hope

Thanks for visiting!

Happy 50th Birthday, Chris Burke!

Dear Chris,

I would like to add to Mardra Sikora’s brilliant Open Letter of Gratitude and Well Wishes to Actor Chris Burke regarding your birthday. From my heart, I wish to add the following…

From Life With Charley: A Memoir of Down Syndrome Adoption:

“We had been married for six years, during which headlines included such historical events as the Space Shuttle Challenger Disaster, the release of Nelson Mandela after twenty-seven years in captivity, and the invasion of Kuwait by Iraqi troops, setting off the Persian Gulf War. 

Life Goes On was on primetime television, starring Chris Burke as Charles Thatcher, a teenager with Down syndrome. And somewhere in Texas was a Desert Storm baby in a foster home. He was soon to be ours. We would name him “Charles” in honor of “Corky,” Chris Burke’s character.”

Then

And so it was. Twenty-five years ago a two month old baby became the center of our world.

And in the midst of it all, there you were. Charley was too little to watch you, but we sure did. He had no idea that there was a teenager named Chris Burke, who was changing the perception of people with Down syndrome. 

Week after week we tuned in to see what “Corky” would do next. We laughed, and sometimes we cried. We watched as your television family paved the way for acceptance, showing us what family is all about.

I remember thinking what a brave person you were, memorizing all those lines, and what an achievement that was. We have no way of knowing how many times you had to redo the screen takes, but we assumed you had to redo your share, just like the other cast members, in their attempts to get it right. At times it seemed as if it was difficult for you to get the words out. And yet, you never gave up. Perseverance. 

For parents of children with Down syndrome, you did more than just step in front of a camera each week. You gave us hope. Made us see the possibilities. Encouraged us to dream. 

Chris, there is a reason we named Charley after you. We wanted to thank you for all you have done for people like our Charley, living with Down syndrome. For being the pioneer  for others who now enjoy a countless successes because of you. For letting the world know that an extra chromosome only adds to who you are, and that quality of life is a choice. For opening the door for those who might not have had a chance, and educating the world that Down syndrome is not something to pity, but to celebrate.

Because of you, Chris, the “Corky’s” of this world enjoy a freedom of self and all the joy that comes with being happy with who you are.

On August 26th, you will celebrate your 50th birthday. We want you to know, Chris, that you have a world full of friends who will be celebrating with you.

Celebrating the 50 years you have spent opening the world to our kids. And Chris, we want you to know that when we look at our Charley, we see a bit of you. 

Thank you Chris, and happy birthday!

With great regard and love,

Sherry Palmer

 Chris, meet Charley, your namesake!

Now

*  *  *

Sherry Palmer is the author of: Life With Charley: A Memoir of Down Syndrome Adoption

Follow Charley Palmer on Facebook at: Life With Charley - And Down Syndrome 

and also Charley’s blog at: Life With Charley 

The Mighty

So pleased that The Mighty chose to share my story...Here's the 

link to Life With Charley: A Memoir of Down Syndrome Adoption

and to The Mighty. Please visit and share their page! 

The Story Follows...

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

***Thanks for visiting our Life With Charley blog. Please, come back often! 

Blog Z - Guest Post

If this is your first visit to my blog, please take a moment and read my recent guest post on Blog Z. Thanks!

https://zharmaeblog.wordpress.com/2015/07/31/finding-comfort-inspiration-in-the-pages-of-a-journal/