To Parents Who Think Their Kid Will Never Ride a Bike

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I’m 52 and still don’t know what I want to be when I grow up. What I do know is that I’m here to give David, my phenomenal 8-year-old son with Down syndrome, every opportunity to not just survive but thrive.

It isn’t always easy. Some days when I’m completely stressed and exhausted, I’ll sit down, put my head in my hands, cry and ask, “Why did this happen to me?” Then David bounds in, gives me a precious smile that lights up my heart and says, “Mom, I love you so much!” 

We’ve encouraged David to develop a strong, healthy attitude for life. Instead of saying “I can’t,” we’ve taught him to say, “No give up, I can do!” David’s successes are pretty amazing; they include winning the first-ever STRIDER Championship bike race for special needs last June, something we never dreamed would be possible.

David Podium.Championships

When he was little, we never thought he’d ever ride a two-wheeled bike. Like typical parents, we bought a tricycle, then tried a bike with training wheels and never thought beyond that. 

At the 2013 National Down Syndrome conference in Denver, I met Dona and Susie from STRIDER. They had a booth with some of their new, larger balance bikes. Before we knew it, David took off on a bike. You would have thought he’d practiced before. We were astonished! 

David eventually did a STRIDER Camp to perfect his skills and even learned to ride a pedal bike. It’s changed his whole dynamic. Besides improved balance and coordination, he’s more confident and social with peers and adults. He’s excelling at dance, track, and even his physical endurance has improved. We recently tackled up a steep, 3-mile hike in the Black Hills. I think I was panting harder than him.

After witnessing David’s transformation, I realized the other important job I have in this life is to encourage parents to be open to biking and other sports by saying, “Yes, my child can do this! I will give them the opportunity.” 

I’m now a coach for the Special Olympics Young Athletes Program and STRIDER Camps. These two programs have reached many individuals who have been given the opportunity to succeed — and are having fun doing it. We’ve transitioned several kids with special needs to pedal bikes without training wheels. Younger kids do seem to have less fear. It’s important to get kids on bikes early, so we even have a class for 3- to 5-year-olds.

One little boy in my current class has emotional challenges and is afraid of praise or excitement. If you get excited when he does something, he’ll cry. His parents can’t even sing “Happy Birthday” to him. Last week, he was the first one in class to do the “one foot take off” on his bike, and it was so amazing for him. I gave him the OK sign with my hand, then cautiously asked if I could get excited and do a dance behind him. He got a big smile on his face and nodded. So I did. He’s not only learning to ride a bike but opening up his heart.

That experience made my day and reinforces why I’m here: to teach kids — and their parents — to say, “Yes I can,” no matter what others may tell them.

Mona and David

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Little Sister Sets Out to Reveal the History of the R-Word

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When Amanda Lukoff first heard the phrase, “That’s retarded,” used to describe something stupid, she was more than insulted — she was curious. How did a medical term morph into such a derogatory, hateful word? — a word she’d heard aimed at people like her older sister, Gabrielle, who has Down syndrome.

Lukoff, a filmmaker in Washington, D.C., and her husband, Danny Egan, set out to reveal the history of the R-word with their film, “The R-Word” (trailer above).

“We want to show people that the word [retarded] actually has a big impact when we use it,” Lukoff told The Mighty. “It’s not a lighthearted joke that some people believe it to be.”

the author and her three young sisters together in matching dresses with a country background
Gabrielle, Samantha, Amanda, Jessica
Author and her three sisters in front of a theater as adults
Amanda, Samantha, Gabrielle, Jessica

“The R-Word,” in pre-production until funds are raised, has already attracted a cast that includes Loretta Claiborne, a Special Olympics athlete and motivational speaker; Cayden and Connor Long, Sports Illustrated’s 2012 Sports Kids of the Year; John C. McGinley, a “Scrubs” actor and Special Olympics Spread the Word to End the Word ambassador; and Lauren Potter, a “Glee” actress with Down syndrome.

Like its trailer, the film will have heartfelt, informative interviews accompanied with easy-to-understand illustrations. By diving into the R-word’s evolution while simultaneously putting a face to disability, Lukoff hopes viewers will learn to follow the age-old advice, “Think before you speak.”

As of early April 2015, “The R-Word” had raised $22,000 of the $200,000 goal it hopes to reach by May 3. Anyone interested in donating to its production can head here. Lukoff says the film will be made no matter what — funds will ultimately dictate how quick the process is. The subject, she feels, is too important to ignore.

“It’s obviously dear to me because of my sister, but it’s more than that,” Lukoff told The Mighty. “It’s about everyone affected by that word and it’s about raising awareness. It’s about recognizing that people with intellectual disabilities are just that — people.”

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This Is How I Wish the World Would See My Brother

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He is fun, he is happy.
He brings so much joy.
He’s wise beyond measure,
and he’s just a young boy.

He lives like no other.
He loves his good life.
While most people focus on anger and strife,

He smiles at strangers to brighten their day.
He sings and he dances his worries away.

He happens to see life the clearest of all
Though doctors may tell him his vision is small.

This poem describes Beau, a boy with a heart.
He’s been loving and kind and a joy from the start.

He has his bad days, but most every boy does.
He forgives with a hug and grin just because.

I still haven’t told you that Beau has Down syndrome.
Some say it’s a disability.
I say it brings wisdom.

Yet, Beau is not normal; he’s very much not.
But normal is boring, so here is my thought:

Life’s an adventure that has its own brain,
So why do we flush boys like Beau down the drain?

Why do we think joy is such a big problem?
Why should we send happiness to the bottom?

I wish our big world would embrace him like me.
He may have his flaws, but he’s taught me to see.

For I am Beau’s sister, I’m Emma Grace Wright,
Who thinks that the world is in need of some sight.

Please start loving all and accepting each other.
The reason I do is because of my brother.

beau

The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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To the Doctors Who Told Me, ‘I’m Sorry, but Your Baby Has Down Syndrome’

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An open letter to my OBs:

Three years ago, you all saw me through my pregnancy with my son, Porter. We found out we were high risk for Trisomy 21 and Trisomy 18. Some of you encouraged me to keep my options open and pushed for additional testing. We caved and had the amnio. Around 18 weeks, we got the call: “I’m sorry, but your baby has Down syndrome.”

down syndrome diagnosis the mighty Again, I find myself visiting your offices with increasing frequency. Again, you’re guiding me through pregnancy. And while I’m now 35 and truly “high risk,” I’ve had my MT21 test and screened negative. There’s no talk this time of options, just “everything looks great.”

My baby has been a baby the entire pregnancy and we haven’t once heard the word fetus. This time it’s different — no one is walking on eggshells when they step into my exam room.

And I think I get it. Your experience with Down syndrome is at the start of each family’s journey. The start is a hard place to be. It’s filled with negatives and fears… grieving for that baby the family imagined. The beginning can be a dark time.

I wish I could hit fast forward for you and show you all the good times ahead, because good times there are. My son is the most unexpected gift I’ve ever received. He teaches me daily and he shows me how to love unconditionally.

down syndrome diagnosis the mighty

So today, in honor of my son and all those with three copies of the 21st chromosome, I’m asking you to call on us experienced parents when you have to again deliver this news.

Offer me as a resource at the same time you offer genetic counseling. Let me and other parents like me guide new families through the uncertainty and show them what we’ve learned.

Let us help. Let us help you, too — let us show you what happens after we walk out the hospital doors and begin to build a life together with our new little soul. Let us show you the love.

This post originally appeared on The Many Adventures of Penny & Porter.

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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5 Ways to Avoid Diagnosis Faux Pas

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1. Say “Congratulations!”

The number one thing every parent needs to hear when a child is born is “Congratulations,” “Job well done,” “She is beautiful,” “Isn’t he going to melt hearts,” the list goes on! If you’re struggling with a diagnosis post-birth, all you want to hear is your child normalized, because the medical professionals might be doing everything but!

Reassurance that your child is as perfect as the one in the next room is not too much to ask for. If a friend of yours has a prenatal diagnosis, the above does not change: “Congratulations on your pregnancy” (after all, this person may have been trying for years), “Well done,” “No matter the outcome, she will be perfect,” “He will change this world no matter the diagnosis”… (However, this is not the time to bring out stories of every person with a diagnosis you’ve ever met. Trust me, it’s not.)

2. Share emotion.

It’s OK not to have the answers, and it’s OK to be overcome by emotion. This is an emotional time. When I rang one of my best friends the day of Eden’s diagnosis, she dropped everything, drove one and a half hours, and sat and cried when I cried. When I asked endless questions, she shrugged her shoulders. She didn’t have the answers; she didn’t try to answer them. She just cried when I cried. (She also brought alcohol, and if any time in my life called for a stiff drink, that was it.)

3. Say “You can do this.”

In a world where there’s so much uncertainty, reassurance goes a long way. And at a time when I was struggling to finish a sentence, telling your nearest and dearest was an impossible task. Everyone was shocked. For some, there was a stunned silence, but for one, there was no hesitation:

“You can do this. Out of everyone I know, you can do this. I can’t imagine what you’re going through, but I know one thing: you can do this.”

I knew I could do this, too, but to hear someone say it, have the utmost belief that I could actually do this, reassured me for months to come. As doubt would try and settle in, I would hear her voice: “You can do this. Out of everyone, you can do this.”

4. Say, “Excuse my ignorance.”

This saying covers a multitude of faux pas, along with, “Correct me if I’m wrong” and “I’m not familiar with your situation/child’s diagnosis.” Using this as a precursor means you’re willing to be educated, you’re OK with me correcting you, and you’re interested in our life. You can pretty much ask anything after this (except “How long will she live for?”…) without getting a face palm!

5. Pay attention to your body language.

Your body language provides a wealth of information! If you look at my child as you gasp and shake your head, I’m immediately going to think negatively. If you look and smile at us or even wave in response to Eden’s wave hello, I can breathe easy, knowing there’s no judgment while feeling your inclusion for my daughter.

This often leads to conversations in the checkout line and at the park. But I’m not a hugely chatty person, so sometimes a smile is where it’s left and that’s OK, too.

Recently, a mother asked me how she should interact with some parents of a child with special needs; they visit the same park as her. My response is, “The same as you would interact with anyone else.” Normally conversations start around weather, children’s interesting behaviors, park facilities, etc. and it’s no different with us. If you’re looking to interact with someone purely because their child has special needs, maybe that’s the wrong motive?

During conversation, I generally acknowledge Down syndrome at some point; this means I’m ready to go “there.” If I don’t bring it up, then guess what? I’m not! Maybe I’ve had a bad day; they happen. Maybe I’ve had some bad medical news… again, that happens! Maybe I’m doing all I can to hold my sh*t together; it happens. Maybe I’ve forgotten my child has a diagnosis. (True story, it happened!)

If your interaction with me revolves around my child’s diagnosis, rethink it, ’cause we have far more to offer than that. It’s such a small part of us. Just as your family is rich and diverse, talented and fun, so is mine. Eden is Eden and Down syndrome is only one part of her. Going to the park, playing on slides, reading books and eating sand are a few of her favorite things; eating veggies, being tidy and sitting still are a few of her least favorite things. I bet she has more in common with your kids than you think!

To sum it all up: see past the diagnosis; talk as if it doesn’t exist; when invited, talk about it; but most of all, see the ability!

A longer version of this post originally appeared on Perfect By Design X2.

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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What I Learned From a Game of Toss Between 3 Little Boys

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This afternoon, in the periphery between rain and sun, I took my kids to our clubhouse pool not knowing if we would leave five minutes after arriving.

I skirted near the edge in my swimsuit as my oldest, Bella, did somersaults and flips in the deep end. Dalton walked over to the smaller pool with his orange bucket full to the brim with plastic toys. Soon he had them lined up side by side in a perfect row of Veggietales and Bubble Guppies. He’d inspect them and mumble in pretend play conversations only he understands.

I forget how abstract his world must be. Our world, the conversational, bold colors we paint with, is unavailable to a child with poor expressive skills like Dalton. He’s receiving but not transmitting as well lately. It’s hard to be known and to make friends when communication is paramount to interacting.

About an hour later, Dalton decided he wanted to join his sister in the pool — big kid territory.

“Go for it,” I said. “Go get Bella!”

Dalton left all of his toys and walked down the big steps, only to turn around and walk back out. I waited. Slowly, he walked around to a smaller entrance and waded in the area where kids his chronological age were playing. He watched and mumbled a few things, but as things normally go, he went ignored until his sister came over with her friends.

He’s not a swimmer yet. He’s a wader.

boy in bed looking at camera

I kept close by, sat on the steps, ready to leap in if necessary. He’s not too fond of the feeling of floating. There’s no vestibular cues for his body to fully process that lack of control.

Two boys next to him in the shallow area began throwing a ball back and forth. Dalton smiled and watched them play.

My heart ached a little, but I waited.

Then, one of the boys turned and smiled at Dalton. He threw the ball and Dalton caught it. My heart danced a little. We both smiled.

They were just three little boys playing ball. My heart jumped up into my throat and my eyes got a little wet. I thought, “They see you buddy.”

To be known, to have someone not only see you but include you is something most of us want. It’s what most of us need to thrive.

And, in so many ways, to love, and be loved.
To see, and be seen.
To touch, and be touched.
To just be included in a game of ball.
To be known.

So many of us have talents, gifts and callings that we’re waiting to be known for. But, what if we were just as content to be known. Not for what we do, for what we are, for what we offer, but for existing. Why isn’t being a human being with a beating heart enough of a reason anymore?

I think it’s enough. I think you’re enough.

I might just start carrying around a little ball in my purse and look for anyone who might want to play. In fact, I think Dalton would like it if I did.

“Somewhere, something incredible is waiting to be known.” —  Carl Sagan

carl sagan quote: 'somewhere, something incredible is waiting to be known'

But I think of it as,  “Somewhere, someone incredible is waiting to be known.”

Dalton is a pretty incredible kid,  and today some really incredible kids became friends.

A version of this post originally appeared on 1001 Kisses

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