Down Syndrome, special needs blog, Uncategorized

Take The Five Second Challenge & Be The Change

‘Be The Change’  … Think about those three words for just a moment.

How can you actively “be the change” you want to see in the world?

For me, this is an easy answer.  As a mom to two amazing kiddos who rock an extra chromosome and who are 100% non verbal, I’d like to change the way the world too often views them.  Lumping the special needs community into a one size fits all category is dehumanizing.  Sounds a bit harsh, I know.  But it’s true.

“Down syndrome kids are always so happy.”

Is that so?  (cue rolling my eyes as far back in my head as is humanly possible).  Talk to me about how happy cutie pie is when I say no to that Oreo cookie.

“Down syndrome kids are so loving … they love everybody.”

Ummmm.  My two ragamuffins are completely nonverbal, yet they’ve figured out a way to constantly grunt, groan, and fuss at each other just like typical siblings … This is more like toleration, not love.  haha.

I hate to burst the bubble, but in my home, beyond the almond shaped eyes, small stature, and bright smiles are two individuals who have distinct personalities, temperaments, strengths, and weaknesses:

A diva who will size you up in a heartbeat, Hopey is fiercely independent and feisty:

Hopey Braids

Charlie, on the other hand, couldn’t be more different.  He’s a soft cuddle bug who’s a master charmer when it comes to getting his way:

Charlie Swing

Hopey is mischievous and funny,  while Charlie is a more go with the flow kinda dude.

Both will go outside to play for the same amount of time … Hope will come dragging herself in the house with skinned knees looking like she’s been wrestling a couple of hogs in a pile of mud while Charlie will look like he’s just bathed and is ready for Sunday School.

I foresee a day when people will automatically accept them and see them as individuals instead of brushing them with the broad stroke of Down syndrome.  When accepted as individuals, Hope and Charlie become human and worthy of identity and relationship.   Neither should be expected to fit into a once size fits all Down syndrome kids bucket.  You get the point.  Yes, both are kids who have Down syndrome … but more than anything else, they’re just regular kids.

be the change 3

I’ve immersed myself in the differently abled community.  It’s become my passion and my life.  In the process, I’ve made very real friendships with many adults who have intellectual and developmental disabilities.  Just like Hope and Charlie, each are unique in every sense of the word.  Through my own relationships and experiences with these amazing individuals , my desire has grown for others to see what I see.  All people, regardless of ability or disability, are much more alike than different.  Whether differently abled or not, for instance, we all love the anticipation that comes with Christmas Eve, how sand feels when squished between our toes, the view from a mountain peak, time spent around a campfire with friends, a sloppy kiss from the family dog, a new pair of jeans that fit just right, the crisp edges of a fresh baked brownie … am I right?

At the same time, though, we are all a bit different.  Some of us are born Chatty Cathy’s while others are excellent listeners.  Some of us are athletic while others are artistic.  Some of us have arms and legs … others were born without limbs.  Some of us have brown eyes, and some have blue.  Well … in the same way, some folks were born with an extra chromosome, while others weren’t.  It’s no big deal at all, because differences are never a bad thing.  They’re just a thing.  And those things that make us unique might actually be what make us most interesting.

I was given this shirt by Bee Attitudes , and was challenged to describe how I’m being the change I want to see in the world.  I’d honestly never thought about it before, but it makes perfect sense when you think about it.  If I want the world to treat Hope and Charlie with love, honor, acceptance, and respect, then I must treat the world, especially the differently abled world, with love, honor, acceptance, and respect.  Through my friendships with the differently abled community, I guess I’ve lived out the term ‘Be The Change’.  How I treat those individuals (since I pretty much adore them) is definitely how I want others to treat my two loves.

be the change 2

 

Here’s my 5 second challenge to you.  If an individual who is differently abled is placed in your path, no matter where you are … at church, a restaurant, a grocery store, or a ball game … introduce yourself.

“Hi, my name is Melanie, what’s your name?”

It’s that simple.

Then follow up with a warm smile and a handshake.

That simple act not only takes five seconds of time, but it validates that you see that person as an individual.  As human.  As equal to you.

I’d love to hear from you.  In the comments, tell me about how you are being the change you want to see in the world.

Remember this:  In the big picture, God never makes mistakes.  And when we choose love, we’re all The Change.

(With every purchase, Bee Attitudes gives back to charities who are making a change.  Be sure to click the link and check out their site!  This mustard colored shirt is one of the softest shirts I’ve ever worn.  The fabric is bouncy, so it hangs nicely.   Not to mention … what about that cute message?)

Just my thoughts,

~Mel

Disney Vacation, Down Syndrome, Uncategorized, Walt Disney World

The Day I Met A Hero On Rockin’ Rollin Coaster

hope disney

What mom in her right mind takes her two special needs kiddos to Walt Disney World during the Christmas holidays?  I mean, wait times are longer than the summer tent revival altar call … and people are more wound up than the church lady who received a dose of the Holy Spirit during that tent revival meeting.  But my kiddos are suckers for Goofy in a Santa suit, and I am too.  So off we went.

Due to the throngs of Disney fans (short for fanatics for a very good reason), the Disability Access system was on overload and crashed.  As a result, for two days in a row, in order to get the much needed paper version of the disability pass, Hopey and I stood in line at Guest Relations for forty-five minutes.  The sole intention of the pass, mind you, is to avoid long lines.  Go figure.

In typical Hopey fashion, as we waited our turn in the queue, she tried her darnedest to make friends with everyone around her the only way she knows how.  She hooked her hands into the pockets of the man in front of her and yanked hard … nearly pulled the man’s britches clear to his knees.  I honestly did get a shot of his white skivvies.  He turned around and glared at me as if I was supposed to know she was going to pants him.  He’d been defenseless, poor guy, but he wasn’t her only target.  She grabbed a boob or two, pinched a teenage boy so hard he yelped, turned flips over the queue line chains, and kissed about a half dozen strangers.  By the time we reached the counter on both days, the Disney attendant was very pleased to hand me a pass and scoot us out the door and on our way.

We rode Everest, Space Mountain, Splash Mountain, Slinky Dog Dash, Thunder Mountain Railroad, Test Track and Tower of Terror.  While Hopey enjoys Dumbo, Pooh, Small World, and the Peter Pan ride … she lives for the thrill rides.  Each line though, even with the Disability Access Pass, was terribly long.  And in each line, I worked as diligently to manage her as she worked to “make friends”.

By the time we hit Rockin’ Roller Coaster, I was exhausted.  She looked up at me with that mischievous twinkle in her eyes, and I begged her to just stand in line patiently like everyone else.  I would’ve had better luck getting an oak tree to dance the Vietnamese Waltz.  With a tummy full of Mickey Bars, the sugar high was real.

As we waited, Hopey couldn’t help but stretch her arms out and touch anyone she could reach.  Every fiber of her being longed to share her excitement with the people around her.  Her face beamed with the biggest smile.  I imagine she wanted to tell everyone how thrilled she was to be at the most magical place on earth, but with no words, the best she could do was to tap the person next to her, in front of her, and behind her.  “We’re all riding this together, and it’s gonna be awesome!” is what she wanted to say.  But to many people in the line, she was an aggravation.  Eyes rolled.  People turned their backs to her.  And some even shot me the angry eyes.

I apologized to several people, and I actually hate when I do that.  What’s there to apologize for?  My daughter is filled to the brim and overflowing with unbridled and uninhibited joy,  but she’s unable to verbalize what she’s feeling.  What else can she do but to try to pull those around her into her world.  “Look at me!  See?  I’m just as happy as you are to ride this ride!”  She speaks the only way she can … with facial expressions, actions, and behavior.

We eventually made our way into the holding room for the pre-show, the one where Steven Tyler gives all the Disney fans  fanatics backstage passes and a limo ride, and Hopey and I ended up in front of the room right next to the door.  But when the door opened up to allow guests to ride the ride, everyone pushed in front of her.  They acted like they didn’t see her and shoved right past her.  In response, I held her close to me and told her to hold on, that we’d wait and be the last in line.

And that’s when it happened.

This man suddenly appeared in front of us, and shouted:  “This is unbelievable!”  He then jumped in front of everyone who was moving forward ahead of us, threw his arms wide open, and continued:  “Everybody stop and let this young lady get out to the ride.  She’s at the front, you’re all cutting in front of her, and it’s rude!”

A young guy tried to dart around him, but he put his hand out in front of the guy.  “That’s not gonna happen!” he stated flatly.  “It’s this angel’s turn.”

And just like that, he’d made a way for us to go in.

You might not know this, but every special needs mom is given a sixth sense.  It comes with the territory and is a not so subtle bead on the heart of people toward the special needs community at large, but especially toward her own child who has special needs.  Within seconds of meeting someone, for instance, I can tell whether the person is accepting (or not) of my two children who sport an extra chromosome.  In the special needs world, people are either all in or all out.  There’s no middle ground.  Even family members and long time friends will sometimes drop out of your life and forget your kiddo.  Being a special needs mom … and being an individual who is differently abled … is not for the faint of heart.

There are those, however, who are all in, and let me tell you, those people glow with a brightness that outshines the sun on its best day.  They dig their heels in deep and embrace that you are the ringleader of a circus where your child is the clown, the juggler, the knife thrower, the trapeze artist, the escape artist, and sometimes the ferocious lion … all rolled up into one.  But mostly our kiddos are the cute clown, eager to be funny, to charm and to make others happy.  And oh, how those amazing saints love our little clowns.  They choose mercy, grace, love, and acceptance.  They laugh when they could judge.  They press in when they could pull away.  They choose to be there.  No excuses.  No matter what.

This complete stranger was one of them.  He was all in.

It’s in moments like that when I get an extraordinary glimpse behind the veil to see what God sees.  The best in humanity.   No one else in that line or in that holding room saw Hopey.  I mean, yes, they looked at her.  But they didn’t really SEE her.  This man, however, grinned when he saw her hands flapping with enthusiasm.  He allowed her to reach out and touch his arm, made eye contact with her, and spoke to her.  Then he took a giant leap further when he publicly acknowledged her and defended her.

But most important of all, the stranger ended up making a difference.

As we waited the last few minutes for the ride, several of the people who’d been in line with us, those who’d previously ignored Hope, smiled at her.  A couple of people asked me if she was excited.  One guy gave her a high five.  I’d like to think they finally saw what they’d missed before and wanted to make up for it.  It didn’t matter to Hopey.  She was happy to share in the excitement with whoever would allow it.

To the ordinary heroes who choose to “see” what others miss.  Thank you.

“A true hero isn’t measured by the size of his strength, but by the strength of his heart.” — Zeus (Hercules)

hope and minnie mouse

Just my thoughts,

Mel

 

 

 

 

Uncategorized

Home … Sweet Yurt

 

I slept in a yurt.  I slept in a yurt.  I glamped in the woods on top of some dirt.

I’d like a yurt here.  I’d like a yurt there.  I’d like sleeping in a yurt most anywhere.

yurt 12

Did I enjoy the spring fed creek?

And being surrounded by the mountain’s peak?

Did I like the quiet atmosphere?

Where I could escape for my mind to clear?

 

Did I like the s’mores around the campfire ring?  Singing songs with my cute offspring?

Did I sway back and forth in the hammock swing?  Did I take in almost everything?

 

Did I feel at home in the village square?

Would I stay there again … would I dare?

I liked it all, I can honestly say.

I’d stay in a yurt on any day.

I slept in a yurt.  I slept in a yurt.

I glamped in the woods, on top of some dirt.

 

Gaaaaaaaa, y’all!!!!  A yurt has been on my bucket list for a few years now, and last week, I finally made some time for the experience.  Let me just say, it far exceeded all of my expectations.  If you want to rough it, this is the way to do it.

Mountain Springs Cabins in Candler, NC is nestled in the blue ridge mountains on fifty gorgeous acres teemed with tall trees and expansive fields.  The site offer cabins, tiny houses, and yurts that are all perched along a rapidly moving deep water stream.  On property, visitors can tube down the ice cold stream.  And nearby, there are several amazing things to experience:

  1.  Sliding Rock, NC — One of my favorite places in North Carolina, Sliding Rock is a  60 foot natural rock water slide that dumps into an 8 foot deep pool of water that remains at 50-60 degrees all summer long.  The cost is only $3 per person.
  2. Chimney Rock, NC — Chimney Rock is considered one of the most iconic sites in North Carolina.  After taking 499 steps up to it’s peak, you’ll soak in the 75-mile panoramic views of Hickory Nut Gorge and Lake Lure.
  3. Biltmore Estate — Built in the late 19th century by George Vanderbilt, at 178,926 square feet, the Biltmore house is the largest privately owned home in the United States.  Built in a French Renaissance style, with 250 rooms, the stately home sits on more than 10 square miles.  The Biltmore House is a must see.
  4. Pisgah Inn Restaurant — Take a gorgeous drive up the winding mountains of Pisgah until you arrive at what looks like a nondescript, very ordinary Inn.  But attached, high on top of the mountain with a picturesque view, is a casual fine dining restaurant.  Walnut crusted fresh mountain trout garnished with blueberry butter … need I say more?
  5. Great Smokey Mountain Railroad — If you’re up for a rail adventure, hop on board a train ride through the beautiful countryside of Western North Carolina.

Spend the day exploring the canopied woodlands, lakes, rivers, and streams of North Carolina.  In the evening, however, come back to your yurt, slow down the pace, and build a nice fire in your own private fire ring.  Make s’mores, sing country songs, and enjoy being unplugged from civilization.  That is the point of a yurt, after all.  Simplicity and togetherness.

What are you waiting for?

 

Just my thoughts,

~Melanie