down syndrome blog – Brick Marshmallows

Being the mom of two kiddos who rock an extra chromosome and who are 100% nonverbal has made me a quasi expert at reading people. In order to overcome what could quickly turn to mutiny, it became necessary for me to anticipate their thoughts before they could even think them. I never have been much of a people-watcher, but because of this acquired skill, I’m much more aware of non verbal queues and human behavior. When your daily survival requires mind reading (no exaggeration), you pay much closer attention to those things that make no sound at all.

Even though I interact constantly with Hope and Charlie, I still can’t imagine what it must be like to be non verbal and to have no real independence. They don’t know any different, of course, but I still believe if I didn’t have a voice, I’d be pretty frustrated a lot of the time. But you know what? They’re not. In fact, aside from those times when the occasional diva comes out of Hopey, they’re the happiest kiddos you’ll ever meet. They can’t tell me if they have a headache or tummy ache, what they did at school, what they want to watch on tv, what color they want their bedroom painted, what song they want to hear in the car, who they wish they could visit, or even what they dreamed the night before. So why are they so happy?

There are four attributes in Hope and Charlie’s lives that never waiver. I believe these are ingredients for happiness that not only pertain to them, but to all of us:

Sleep. Hope and Charlie don’t go down easy, but when they finally give up the ghost, they sleep like rocks. Because of their disability, they have no guilty consciouses, no agendas for the next day, and no schedule to worry about. They don’t even have to think about what they’re going to wear to school the following day, because I do all the grunt work for them. No responsibilities means they don’t have a care in the world, so once they’re snoozing, a locomotive train coming through the house wouldn’t disturb them. While it would be difficult to clear our minds in the way Hope and Charlie do, sleep is vital to our mental and physical well-being. Sleep keeps your heart healthy, reduces stress and anxiety, makes you more alert, improves your memory, helps you lose weight, improves your mood, and helps your body heal itself.
Exercise. Hope and Charlie are constantly moving. Much to my chagrin, when they’re awake, they’re literally moving nonstop. As with most kiddos, they are balls of energy. While our busy schedules and long lists of responsibilities don’t allow us, as adults, to be in constant movement, we can (and should) make time to get our hearts pumping. Exercise produces changes in the parts of the brain that regulate stress and anxiety, making you feel happier, helps with weight loss, builds muscle and strong bones, aids sleep, and reduces risk of chronic diseases.
Choose to be happy. Hope and Charlie don’t ever ask for anything, because they don’t have voices. As a result, they’ve learned the art of being happy with what they have. Whatever I fix them to eat, they eat. Whatever clothes I buy them, they wear. Whatever toys they have, they make the most of. The absurdity of “the haves” and “the have nots” has not even occurred to them and never will. They live in the moment and honestly make the most of life. No worries. No wants. Just making a choice to be happy. It might sound simple and trite, but we can all choose to be satisfied with what we have and to be happy.
Be a friend. Because Hope and Charlie are unable to speak, they are much more aware of what’s going on around them, and they are especially open to people. Somehow, for instance, they are able to discern when a person needs a hug. Hopey can be running wild, but when a person who is hurting comes into her presence, she immediately dials back her energy and gives a gentle hug. Charlie can be happily playing in his own little Charlie world, but when a person enters our home, he always puts down what he’s doing in order to give warm hugs. Both of them are friends, no matter what. You can be tall, short, rich, poor, successful, or a deadbeat … they never notice. They only see people. Studies have shown being a friend to others offers a myriad of benefits, such as increased feelings of belonging, purpose, increased levels of happiness, reduced levels of stress, and improved self-worth. Giving our hearts away to others in the form of unconditional friendship is a beautiful gift.

Try to make these four habits a part of your life and see what happens. Like Hope and Charlie, you might feel happier too.

Just my thoughts,

Melanie

christian blog, Down Syndrome, Fitness, get fit, Health blog, self care

How A Special Needs Mom Fought Loneliness With Three Easy Steps … and Won!

January 19, 2019January 19, 2019 Melanie Hollis

I’ve been a special needs mom to a princess who rocks an extra chromosome for more than 13 years, and thanks to the miracle of adoption and a red-headed cheese puff who also rocks that extra something, I’ve been a special needs mom to two kiddos for 10 years. Both are non-verbal, and both are a handful of mischief, drama, and constant giggles. Like typical siblings, they fuss with each other (which amounts to grunting back and forth for what seems like an eternity at times). They take things from each other, occasionally pinch one another, and even manage to tell on each other. Picture little man grabbing my hand and pulling me to his big sister, then bursting into tears … while at the same time, big sister rolls her eyes and looks away. Yep. She’s usually guilty.

Neither can take care of any of their needs independently. They rely on me completely. I dress them, bathe them, feed them, put them to bed, and read their minds (at least I try). I talk to them, filling in their quiet with my own version of what they’d probably like to say if they had a voice. Hopey has a high cartoon voice when I speak for her. She thinks it’s hilarious, especially when I roll my eyes, stomp my foot, and act like a true teenage girl. For Charlie, I use a sweet baby voice … because he’ll always be the baby of the family.

We try to agree on music in the car. If I choose a Luke Bryan or Bruno Mars song, we’re always good. But when I step outside the box, they sometimes break down into sobs. We try to agree on clothing choices, but they’ve been known to rip off their clothing just as I finished getting it on their wriggling bodies. Charlie, for added affect, likes to throw his shirt across the room. Uhhhhhm, I guess you don’t like the shirt choice, dude? haha. (Did I mention they are full-on drama?) I can laugh about it now. I mean, c’mon, it’s funny.

The stress level of a special needs mom has been likened to the stress level of a combat soldier. I’m convinced it isn’t necessarily because the role is so difficult, but because special needs moms never feel like they’re doing enough for their kiddos. We question ourselves constantly. Have we provided enough opportunities? Therapy? Education? Are we feeding them too much? Are they exercising enough? Did I remember to double lock the doors so she can’t escape during the night? Is his sniffle worth a doctor’s appointment? Or is the risk of him catching something worse too great for that appointment? And don’t even get me started on how much we worry about our child’s future. Honestly, our minds never shut off.

There was a time when I was so caught up in figuring out how to be a special needs mom that I forgot how to live. Unintentionally, I closed doors on friends and family who’d been in my life for years, because I felt they couldn’t possibly understand my new normal. One day, I awoke to an overwhelming feeling of loneliness and regret. I’d been so laser focused on reaching my two kiddos, that in the process, I forgot that I needed a support system. I felt lost. I thought I was being the best mom in the world. But you know what I realized? If I lose myself, I’m not being the best mom I can be. More than anything else, they need me to be me.

I’d like to say that with this realization came a sweeping life altering shift. As with most change, however, it was slow and steady. I began by hiring a trainer. I felt if I committed to her and to a schedule, I’d stick with it. As it turns out, she became my biggest cheerleader. Not only did she daily encourage me to push through my workouts, as I got to know her, she slowly invaded all of my empty, hurting spaces. She asked me questions about my life. She listened. And she reminded me that I’m enough and that God is always with me. Last year, she challenged me to run a 5K. I ended up running thirteen. She’s been my trainer for four years now, and I count her as one of the best friends I’ve ever had in my life. The gym quickly became my community as I met new people. In the process, I became physically stronger. The more fit I became, the happier I felt. My energy increased as endorphins kicked into high gear, I went from a size 8 to a size 4, and then one day I realized I felt like myself again. It had been years.

Around the same time, I decided to open my home once a month to a group of my best buddies for a pizza party and karaoke. They are all so much fun, I knew they’d usher happiness right into my life on a regular basis. And they never disappointed. What I didn’t expect, though, was what a tremendous role their parents would play in my fight. These selfless moms and dads would drop off or pick up their adult children, and instead of walking away, they’d hug me. They’d look me in the eyes and thank me for hosting a party. Sometimes they’d come into the house and chat with me. They made an effort to get to know me and my children. Welcoming me into their lives without any walls, prerequisites, or expectations, they made me feel like a part of their families.

And finally, I became intentional about hiring sitters so that I could get out and do regular things that other moms get to do. I have to say, God really showed off in this area. I was terribly slow to trust others with my munchkins, because remember, I never left them. So it was going to take some super fantastic girls who had a true desire to spend time with Hope and Charlie before I’d be able to leave them. He brought me Nancy, Dana, two Hannah’s, Kelsey, Katie, Bryn, Bethany, and Rikki. I can’t say enough about these girls, who are my superheroes. Each wear their love for my kiddos on their sleeve. They’ve worked tirelessly to break into Hopey’s tiny circle, they’ve tried every trick in the book to get Charlie to eat solid food (at 10 years of age, he still has his food puree’d and put into a bottle), and they’ve recklessly embraced all of me. Whenever I attempt to show them more love and appreciation, they immediately meet we with the same. They’re like beautiful mirrors reflecting everything I have to give right back to me. I treasure them. In every way, they are the hands, feet, and heart of God.

Life is messy. There are times when we wake up and wonder how things became so crazy. Can you relate? But my message is that it’s never too late to make changes. Maybe you’ll be blessed by getting a chance at a re-do. Or perhaps you’re like me, and you’ll have to start all over from scratch. It doesn’t really matter as long as you dig your heels into the dirt and move forward with intention. I began with three simple goals.

Exercise so I can be healthy enough to raise my kiddos
Open my home to others
Hire sitters so I can occasionally get out

I stuck with them, continued to move forward, and my life totally turned around. Not only am I not lonely, my life is filled and overflowing. If I can do it, so can you. What are your three simple goals? Write them down and make a decision to hold yourself to them.

Just my thoughts,

~Mel

Disney Vacation, Down Syndrome, Uncategorized, Walt Disney World

The Day I Met A Hero On Rockin’ Rollin Coaster

January 6, 2019January 6, 2019 Melanie Hollis

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)

Just my thoughts,

Mel

Tag: down syndrome blog

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How A Special Needs Mom Fought Loneliness With Three Easy Steps … and Won!

The Day I Met A Hero On Rockin’ Rollin Coaster