Blake Pyron, Business Owner With Down Syndrome, Lands NASCAR Ad


Blake Pyron, a 20-year-old with Down syndrome, recently became the youngest business owner in his city of Sanger, Texas, and the only business owner with Down syndrome in the state, according to his mother Mary Ann Pyron.

On Sunday, Blake Pyron, the owner of the snow-cone dispensary Blake’s Snow Shack, took things one step further when he netted prime advertising on a NASCAR Sprint Cup car. The No. 96 race car bearing the Blake's Snow Shack logo.

At Pocono Raceway in Long Pond, Pennsylvania, the No. 95 car driven by Circle Sport-Leavine Family Racing‘s Ty Dillon was adorned with the palm-tree logo of Blake’s Snow Shack.

The promotion was the brainchild of Leavine team owner Bob Leavine, whose grandson Tanner is on the autism spectrum and has been helped by a local organization for adults with developmental disabilities called Breckenridge Village of Tyler, which was twin-billed with Blake’s Snow Shack on the race car.

“These are great stories that people need to be aware of and we had an opportunity to do that on our Pocono car,” Bob Leavine said in a press release. “We wanted to put it on the car so we could make a statement and say, ‘Hey, we are behind this.’”

Tanner and his mom Melynda Leavine Hensley attended Sunday’s race, along with Pyron and his dad.

“To bring recognition to these young men and so many more like them is such a wonderful thing,” Leavine Hensley said in a press release. 

And though the Circle Sport-Leavine Family Racing car wound up placing 18th, the experience was second to none for the Pyrons. Blake’s father said he’d never seen his son happier.

Mary Ann Pyron recalled being told by a medical professional that her son would never hold a job.

“Turns out the ‘professional’ was right,” Pyron told The Mighty. “Blake doesn’t have a job — he owns his own business.”

Blake’s Snow Shack has a website and Facebook page.


Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

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Sherry Clair’s son, Gabe

Why It's a Big Deal My Son With Down Syndrome Told Me His Hand Hurt


My son, Gabe, got hurt. More specifically, he had a splinter. It was a fairly good-sized splinter, too. The outside crease of his hand was red and irritated. I wouldn’t have known it was there because it was cleverly hidden in the lines of his chubby little hand, but he told me about it. He told me about it. My sweet little boy came up to me, held up his little fist to show me and said, “Ow, tiss.”

I stared at him. My face was blank and my mouth was open. I apparently sat like that for a moment too long because he repeated the request, shoving his little fist even closer to my face. “Ow, tiss,” he said again. The insistence in his tone and his repeated request snapped me out of my amazed stupor. I took him over to the couch, flipped on the light and removed the splinter using my master splinter removing tool (tweezers). I gave it another kiss, he murmured “kyoo” — his version of thank you — and ran off to play with his “scoobus.”

I stared at him for a long time. I didn’t realize I was crying until I felt a tear drop onto my arm. I know what you’re thinking: “No big deal, he had a boo-boo. Mommy kissed it. All better, so what?” But it is a big deal. It’s a really freaking enormous deal! It’s not just a request from an injured toddler. This is an entire new world of realization and understanding we’re talking about. Gabe recognized he had an injury, he knew Mommy could fix it, how Mommy could fix it and then he told me about it. He didn’t just speak, he used language!

Speech and language are two different things. Speech is the physical production of sound. Gabe can speak. He repeats words that are spoken to him in the best way he can. He uses approximations of words. For example, dog is “dah,” thank you is “kyoo,” see you is “syou.” He also uses signs to speak along with his word approximations. He’ll say “mil” and sign milk. He’ll sign grandma and say “mama.”

Language is a method of human communication. It’s a rule-based set of processes. Language represents much more than just words. It represents thoughts and ideas. Language is social, it’s communicative, it’s a skill and it can be difficult.

Think about it like this: You see a cat. You think of the word “cat” in your mind and you want to say cat. So your brain puts the word “cat” in a car (motor impulse) and sends it down the highway (neurons) to your mouth (oral motor system). Your lungs have to fill up to produce the air to flow through the vocal cords to produce the sound that will turn into cat. The back of your tongue moves to the roof of your mouth in anticipation of the “c” sound. Your lips widen and your tongue drops down away from the roof of your mouth for the “aaa” sound. And then the tip of your tongue presses against the roof of your mouth, just behind your front teeth, to produce the “tuh” sound.

Now imagine the same process but it’s a bicycle instead of a car on a clogged-up highway. You have a mouth with muscles that aren’t as strong, feeling that isn’t as sensitive and two words to speak! It doesn’t sound like such an easy process now, does it? Speech is really hard! Language is even harder!

That’s why this is such a big deal. Gabe recognized his hand hurt and was able to name that feeling. He was able to problem solve. Who will make this feel better? Mommy! He was able to put a name to his feeling and establish a request in two seemingly simple words: “Ow, tiss.” He used language to express his pain and his desire for me to help him. It was beautiful. It was heartwarming. It made me want to jump up and down. And it made me cry.

I have cried a lot in the four years since we received Gabe’s Down syndrome diagnosis. It should be noted I’m kind of an emotional person anyway. In the beginning, I had mostly sad tears, but those disappeared the moment I held my sweet boy for the first time. I still have rare moments when I look too far into the future and begin to shed some worry-filled tears, but those are few and far between.

The tears that fall now are mostly ones of joy, happiness and laughter. Or when I step on one of the kids’ toys in my bare feet! Now I guess when I step on a toy, instead of crying, I can just look at Gabe, hold out my foot and say “Ow, tiss.”

This post originally appeared on Hand Me Downs.

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Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

author's baby, who has down syndrome

When a Mom Told Me It Was 'Good News' Her Baby Doesn't Have Down Syndrome


author's baby, who has down syndrome I celebrated my 41st birthday last month. As I reflect back to the previous year, you would think I would be glad to have my 40th year in the books. Heck, I was surprised by an unexpected pregnancy, received a prenatal diagnosis that my son has Down syndrome, cared for him for 17 days in the NICU after duodenal atresia surgery on day four of his life and then watched him have open heart surgery at 4.5 months old. Definitely not the
easiest chain of events. It wasn’t at all what I expected year number 40 of my life to be. But I don’t view it as the worst year of my life. In some ways it is one of the best.

It is the year that stretched me in ways I didn’t know I could, it challenged my weaknesses and pushed me to a new level of emotional and spiritual maturity and it opened doors to adventures and opportunities I am still unveiling. And most importantly I received the gift of a beautiful son, who brings so much joy to my life. Don’t get me wrong, there were some dark days and a lot of tears in year number 40, but what I gained this year cannot be overlooked.

I recently had somebody confide in me they received a prenatal diagnosis similar to mine. She didn’t do the amniocentesis, so it wasn’t for sure, but they were preparing for the possibility. They chose to wait until the baby’s birth to confirm. I knew she had to be just as scared as I had been, and I did my best to help her realize it was going to be OK either way.

She was hoping it was a false positive. When she gave birth, I checked in to find out if her baby has Down syndrome. She responded by saying, “Well, we got the good news we were hoping for: she doesn’t have Down syndrome.”

Without any hesitation I thought, “Your loss.”

What?

Your loss?

I couldn’t believe this was the reaction from the woman who spent day after day pregnant in a dark cloud anticipating the arrival of a baby she didn’t even think she could love or know how to love. I was the mom who thought my life was over and that this child would ruin my life. I was someone who used to feel so uncomfortable around people with disabilities. And now I felt someone was missing out by not getting a Down syndrome diagnosis?

Shouldn’t I be feeling jealous of her “good news?”

I couldn’t believe it. Do I actually think that having a child with Down syndrome is a positive thing? A blessing? A good part of my life? Do I believe those who don’t get this experience are missing out?

I do.

This was yet another turning point for me as I continue to grow with Cody. And don’t get me wrong, I would have felt the same happiness and relief this mother did if Cody was born without Down syndrome. And I do know our life with a child with Down syndrome is going to bring challenges and more hard days and tears and frustration. And I don’t expect people to hope for a child with Down syndrome.

But what I do know is life with Cody is wonderful, and if you do receive the gift of a child
with Down syndrome, it is not a bad thing, you have not lost… you have won.

Follow this journey on Growing With Cody.

The Mighty is asking the following:  Tell us about a comment about your (or a loved one’s) disability, disease or mental illness that has stuck with you for one reason or another. Check out our Submit a Story page for more about our submission guidelines.


Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

mom and joey smiling

'What’s Wrong With That Boy?' 6 Ways to Talk to Your Kids About Disabilities


“Daddy, what’s wrong with that boy?” the little girl asked. I knew she noticed my son Joey, an amazing little boy who just happens to have Down syndrome. He also developed alopecia a few years ago, leaving him with no hair — a look he owns fabulously but that draws more than a few stares. I turned with a smile, happy to help answer her questions, but the dad turned uncomfortably away before shooing his daughter to a different part of the playground.

Honestly, for most of my life I have been uncomfortable around people with disabilities. In fact, until recently, I would have gone out of my way to avoid someone who looked or acted different because of a disability. If my small children had pointed out the differences by asking questions, I would have been horrified. Now, though, I am on the other side of the fence. Six years ago, I was blessed with Joey, and he has taught me a lifetime’s worth of lessons already.

Parents often ask me how to talk to their kids about disabilities. Even more often, I hear the hushed conversations around us at the park, the zoo and the grocery store. I want to hug every curious child and every well-intentioned parent. I want them to know their questions are OK. Better than that, they are good. We should ask questions and start a dialogue instead of avoiding and allowing confusion and fear to grow.

Here are six ideas to keep in mind the next time you talk to your child about people with disabilities:

Kids with special needs are different, and that’s not a bad thing. It is easy for us to be uncomfortable around people or situations that are “different.” Often we think it best to pretend the disparities don’t exist, but this doesn’t serve anyone. In fact, it devalues my sweet boy and confuses your child. Instead, let’s talk about them in a respectful way and see what we can learn.

Some differences are just, well, different. For example, Joey is bald and has almond-shaped eyes. That is unusual, but he looks super cool with his bald head. And if you look closely, you’ll notice everyone’s eyes are distinct from each other.

Other differences may point to a relative weakness or strength. Joey’s extra chromosome makes it harder for him to learn as quickly in school as other kids might; but he is also sensitive and loves to make people smile. “So,” you might encourage your child, “you could help Joey learn how to write his name, and maybe he can show you some fun ways to cheer people up when they are feeling down!”

Kids with disabilities are also the same as other kids. Talk about the things your child and the child with special needs have in common: Do they both have eyes? Hair? Hands? What about things you can’t necessarily see? Do you think that little boy/girl has feelings? What do you think he/she likes to play? What kind of music might he/she listen to? Some children may have a disability, but they don’t want to be completely defined by it.

People with disabilities are not necessarily sick. Sometimes it’s hard to come up with the right vocabulary to tell our kids about special needs. Let me gently suggest avoiding the words “sick” and “wrong” — as in, “That boy has a sickness that makes it harder for him to talk to people,” or “Something is wrong with her brain, so she can’t talk as well.” Some people are born with special needs, and other disabilities happen as the result of an accident or illness. The disability itself, though, is not a sickness or something bad. Nor is it something other kids can “catch,” an important distinction to make when explaining disabilities to children.

Words matter. It’s OK to teach children the right words to talk about our differences: disability, special needs, even the names of specific disabilities, like Down syndrome, autism, etc. In addition to words like “sick” and “wrong,” try to replace the word “normal” with “typical” — as in, “A typical child might walk at 12 months, but Joey didn’t walk until he was almost 3 years old.” We know our kids are different, but comparing them to “normal” kids just makes us feel like you’re calling them “weird” or “bad.”

Also, name calling and jokes at another person’s expense (whether or not that person has a disability) is not acceptable. In fact, words like “retarded” are extremely hurtful, whether you are using it as a direct slur at a child with special needs or using it as slang (“That test was so retarded!”). According to r-word.org, “‘retard’ and ‘retarded’ have been used widely in today’s society to degrade and insult people with intellectual disabilities. Additionally, when ‘retard’ and ‘retarded’ are used as synonyms for ‘dumb’ or ‘stupid’ by people without disabilities, it only reinforces painful stereotypes of people with intellectual disabilities being less valued members of humanity.” It can be hard to change the words we use without thinking, but it is worth the effort. For more information about the drive to “Spread the Word to End the Word,” visit r-word.org. They even have helpful suggestions of other words you can use in your everyday conversations.

It’s OK to ask questions. (And if you don’t know the answer, ask me!) Kids are naturally curious, and that is wonderful! Don’t feel like you have to shush a child who asks questions about disabilities. If you don’t know the answer, that’s OK too! Don’t put all of the pressure on yourself, but feel free to pass the questions on to the child’s parent. After all, it’s no secret that moms love to talk about their children. Please ask us! We would love to help bridge the gap between our kids and yours. Also, remember when I asked that we avoid using words like “sick” and “wrong” when talking about people with disabilities? Well, that rule doesn’t really apply when it’s coming from a little one. I fully expect kids to ask questions like, “What’s wrong with him? Why can’t he talk like me?” They don’t have the right words yet, and that is fine. I will be happy to help them learn.

Look for resources. Many kids’ shows have an episode or two about kids with disabilities, such as the “Daniel Tiger’s Neighborhood” episode titled “Daniel’s New Friend,” available here, as well as on Hulu or Google Play. “Sesame Street” routinely features children with disabilities as well.  Many great books exist on a variety of reading/age levels. I personally like “We’ll Paint the Octopus Red” by Stephanie Stuve-Bodeen and “My Friend Isabelle” by Eliza Woloson and Brian Gough, which both deal with Down syndrome but can open a discussion to disabilities in general. The University of Wisconsin at Oshkosh has a fabulous bibliography of books on different types of disabilities.

Parents, great work for addressing this topic with your kids and wanting to do it well. Can I leave you with just one more tip for you, though? The best way to teach a child something is to model it for them. If you see a child with special needs, smile and say “hi.” Talk to the parents. If you approach the parents in a comfortable and friendly way, it is much easier for your child to do the same with their son or daughter. In the end, we all want the same thing: to be seen and valued. Isn’t that a lesson worth teaching every child?

Read more from Katy at katyepling.com.

This post first appeared on The Huffington Post.


Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

Keli Gooch with her daughter, Tayler

How My Expectations Impeded the Growth of My Child With Down Syndrome


I received a call the other day from an occupational therapist (OT) who assists Tayler, my 14-year-old daughter with Down syndrome. The phone call went something like this:

OT: “Hi! I’m your daughter’s OT. I was calling to do a quick review and update. I have been seeing her for a while now, and she’s had the same goals.” (True.)

Me: “Yeah, her teacher and teacher’s aide work really hard with her. Fine motor skills are just really tough for her.” (True.)

OT: “Well, I was going to suggest that since she still has the same goals, how do you feel about terminating services?” (Nervous.)

Me: “Oh, that’s fine.” (Lie.)

OT: “She is really an awesome girl. So sweet.” (Definitely true.)

Me: “Oh, thanks. OK, that’s fine. Have a great day.” (Silent, invisible tears.)

Tayler’s occupational therapist seems like a nice woman, but I knew what she meant. I know that doctor and therapist’s reports are necessary, but good grief, to a mom, they can be quite horrible.

When I was pregnant with my daughter at age 22, I had no clue she would be born with an extra chromosome. Once she was born, she seemed to receive a ton of services: speech therapy, physical therapy and occupational therapy. We even had a service worker from Tennessee’s Early Intervention System to help her reach milestones.

When she was younger, I can remember hearing her therapists and other people say things like, “She’ll talk when she’s ready” and “She’ll be running around and be independent in no time.”

Now that she’s 14, I don’t hear those phrases from professionals as much anymore. Sometimes I wonder what her doctor and therapists think behind closed doors. Do they feel like improvement may never happen? Have they given up on her?

It’s taken me a while, but now I realize my daughter’s lack of progress is my fault. It’s my fault because I’m still grappling with my concept of how things should be.

It’s my fault because I’ve had a hard time ridding myself of certain preconceived expectations. Society has given us this idea that any deviation off of the traditional path equates to a lack of progress or a “detour” of some sort.

There’s this idea that once we turn 18, we’re adults and need to choose a career path by going to college or getting a job. Then we have to find a place to live, pay bills and form appropriate social bonds with others. Anything short of this can be considered a “failure.”

I can’t change society, but I have to acknowledge my personal definition of “progress” needs to be stripped, broken down and reconstructed.

Before having my daughter, I imagined she would go to an awesome college of her choice, eventually marry and I would cry at her wedding. In my mind, we should be further along. In reality, we aren’t and she just may not be ready for certain milestones.

It’s my fault because I need to calm down, breathe and just relax. My inclination towards perfectionism says I need to work hard until my daughter is able to live independently and be a “productive member of society.”

My calm, rational self says my love for my daughter has no end, and my husband and I will support her until my last breath on earth.

So I’ll stop impeding my daughter’s growth by not placing my concept of progress upon her. I’ll try hard to dissolve any negative thoughts and will focus and be grateful for the simple things. And I’ll continue to be thankful for my daughter’s encouraging hugs.

And the next time I read a report on what she “can’t” do or say, I’ll try my best to combat those thoughts with reminders of previous victories.

My goal is to allow my daughter to just be.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.


Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

Courtney’s daughter, Emersyn

What She Needed to Hear After Her Child Was Diagnosed With Down Syndrome


During her pregnancy, my friend Courtney was told her daughter Emersyn would be born with Down syndrome after the results of her quad screen came back positive for Trisomy 21.

This is a statement every parent of a child with Down syndrome has received at some point, whether it’s a prenatal or birth diagnosis. The manner in which this simple yet significant statement is said will be forever remembered and makes up the parent’s diagnosis story.

Most parents can easily recall the emotions they felt when they were handed this news. They can also recall in great detail everything that happened in that moment and the moments following. While those with Down syndrome continue to amaze us and break down barriers, some medical professionals don’t deliver this message with much sensitivity, assurance or hope.

After Courtney received the news from her OB’s office, she was then referred to a specialist. They explained the specialist would go over her options and that her pregnancy was now labeled high risk. Courtney was encouraged to consider terminating her pregnancy and continued to fluster her doctors when she explained she wouldn’t consider terminating.

The following is a letter she wrote to her prenatal specialist comparing the unsupportive experience she had with the positive experience I had. She hopes in the future to write a letter to her OB and their office as well. Her hope in sharing this letter is that perhaps it would help even just one family see the potential and the hope that is their baby instead of just the limitations and grim future that can be portrayed.

Dear Doctor,

A friend recently told me of when her prenatal specialist would see her child during her sonograms, he would comment, “He’s perfect.” Once her son was born with Down syndrome, she visited that same doctor. He looked at her little boy and said, “I told you. He’s perfect.”

Her story tore me apart. While I was so grateful for my friend’s experience, it filled me with such sorrow because of what I should have had. I wish you would have been that doctor.

I came to you during the most difficult time in my life. I was terrified, anxious and in complete despair. I didn’t know the truth yet about my baby, and that’s what I desperately needed from you. But instead of support and encouragement, you suggested we terminate our child. I told you her name, and you asked us again if we understood how low our quality of life would be with a child with Down syndrome. You suggested we reconsider our decision to continue the pregnancy.

From that first visit, we dreaded our appointments. The most difficult time in my life was made nearly unbearable because you never told me the truth.

My child was perfect.

I’m not angry. I’m not bitter. I’m really just sad. I’m sad the tiny beating hearts you see every day don’t fill you with a perpetual awe. I’m sad the intricate details and the miracle of those sweet little fingers and toes, lungs and eyes and ears don’t always give you pause. I’m sad you were so very wrong to say a baby with Down syndrome would decrease our quality of life. And I’m heartbroken you might have said that to a mommy even today. But I’m mostly sad you’ll never have the privilege of knowing my daughter, Emersyn.

Because, you see, Emersyn has not only added to our quality of life, she’s touched the hearts of thousands. She’s given us a purpose and a joy that is impossible to express. She’s given us bigger smiles, more laughter and sweeter kisses than we’ve ever known. She’s opened our eyes to true beauty and pure love.

So my prayer is that no other mommy will have to go through what I did. My prayer is that you, too, will now see true beauty and pure love with every sonogram. And my prayer is when you see that next baby with Down syndrome lovingly tucked in her mother’s womb, you will look at that mommy and see me then tell her the truth: “Your child is absolutely perfect.”

Follow Amanda Dickinson’s journey on Adventures, Reflections, and Life Lessons.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.


Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

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