21 Things I Want You to Know About a Down Syndrome Diagnosis

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Has your baby just been diagnosed with Down syndrome? First of all, congratulations on your pregnancy or the birth of your beautiful baby. I’m also a parent of a child with Down syndrome, and here are 21 things I would like you to know:

1. You may be feeling shocked, scared and alone. It’s OK, so did we. It will pass. What you may be feeling now is transient. Your life has changed for the better, you just don’t know it yet.

2. Your baby may be more like you than different.

3. There is no “one size fits all” with Down syndrome. Your baby will be unique, beautiful and very much their own person, just like you.

4. Your doctor may present a negative view about Down syndrome and paint a bleak picture. I promise you that life with a child with Down syndrome is not bleak. Far from it. It’s bright. Very, very bright.

5. You might think the other children in your family will be impacted in a negative way, but they will love and accept their sibling and may be changed in ways that will make you burst at the seams with pride.

6. You might have to look within yourself and be open to transformation, because your baby might transform you and open your eyes to a new world.

7. Your baby may have some health issues associated with having Down syndrome. I know it can sound scary, but medical treatment is excellent these days. Your baby may have no issues, but you will have help at hand either way.

8. Your baby might take longer to reach milestones, but they’ll teach you patience, appreciation and courage along the way.

9. You might become part of a community of other parents and therapists who will be an extension to your family. They can support you, celebrate with you and grieve with you. They will be with you always.

10. Your marriage or partnership could become stronger. You will grow together and be challenged. You will bond over the baby you have made together. You must be strong and you will be.

11. Your baby will amaze you each and every day. Trust me.

12. Be proud when announcing the birth of your baby. Friends and relatives will hopefully take your lead. There might be negative comments that will sting and hurt, but hold your head high and don’t let anyone steal your joy.

13. You may have to reach out for support when you feel overwhelmed. Take one day at a time and enjoy your baby.

14. Don’t look too far into the future. It may seem like too much to think about, so just focus on the now.

15. I believe there’s never been a better time to be born with Down syndrome.

16. Your baby will grow into a child who will go to school and may excel with support in place.

17. You might look at other kids with Down syndrome with the same wonderment as your own child because you know how hard they have worked to achieve their milestones.

18. You may look back at the time you found out your baby had Down syndrome and wonder why you were so sad.

19. You never have to be afraid to stand up to a medical professional who may have a poor bedside manner — ever.

20. Remember that “comparison is the thief of joy.” You might get caught up in comparison, so trust your child’s own journey.

21. You can do this. I believe in you and need you to believe me, too. Your baby with Down syndrome may be the best thing to happen to you. Have faith, dream big and love your new life.

Ange Longbottom, baby with parents' hands

Follow this journey on About Ash.

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When the Star of Our Film Said, 'I Don't Know If I Can Do This'

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It was the last day of our first week of shooting the movie “Where Hope Grows” in Louisville, Kentucky. David, a young man with Down syndrome who plays the lead role, Produce, in the film, had just finished shooting a few takes at Slugger Field.

After one take, he started walking over to the dugout and motioned for me and Chris Dowling, the writer/director of the film. We started walking David down the corridor, assuming he needed to use the restroom. He stopped us and said “Guys, I’m overwhelmed. I don’t know if I can do this. I’m overwhelmed. Why did you pick me. You guys changed my life.”

Milan talks with David on set

That line really hit us.

You see, just one month before, David was just another person with a dream. After a nationwide search, he beat out many others for the lead role. While many had more acting experience (David had none), David’s personality won the day. Plus, he got to do it in his own hometown. When we started the film, we knew we wanted to tell a story of the underdog — a story of how hope and inspiration can come from the most unlikely places (even though now we know it’s a likely place). But I don’t think we really understood that impact it would have on the one person who was going to bring this passion project to life.

We first told him what an incredible job he’d been doing all week. We also told him he had changed our lives and he was going to change the lives and perceptions of everyone in the crowd. He then gave us that infectious smile of his, and we all knew it was going to be OK. Chris walked him back to the field, gave him one last pep talk and then David put on a show.

crew member talks with David on set

That night, David not only crushed his performance, but in between takes he was dancing and pumping up the crowd. We had a little over 500 extras on a cold November night. With nothing but his dancing and some help from our friends at Little Caesars who gave us 105 free pizzas, we were able to keep the crowd and get our shots. We couldn’t have done it without him.

No one in the crowd that night would’ve known that for a moment, a little doubt crept into David’s mind. A moment of fleeting self-confidence all but disappeared when he was back in the spotlight. There are so many moments that stand out from the making of this film and even more hearing from people on how the film has changed their lives and perceptions. But sometimes I think about the days when it was all just a dream and hope.

This is why we hope people will support our film. Hollywood needs to see that when they talk diversity, that conversation should include intellectual and developmental disabilities. We need more stars like David, like Lauren Potter of “Glee,” like Jamie Brewer of “American Horror Story” to create more inclusion and respect in this world and to give new parents hope.

David smiles and waves his baseball cap on set

“Where Hope Grows” is available for purchase at Walmart, iTunes and Amazon.

Watch the trailer for “Where Hope Grows” here:

Lead photo source: Screenshot from “Where Hope Grows” trailer

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To My Daughter With Down Syndrome on Her Wedding Day

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Dear Jillian,

It is the afternoon of your wedding. June 27, 2015. In two hours, you will take the walk of a lifetime, a stroll made more memorable by what you’ve achieved to get to this day. I don’t know what the odds are of a woman born with Down syndrome marrying the love of her life. I only know you’ve beaten them.

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You are upstairs now, making final preparations with your mom and bridesmaids. Your hair is coiled perfectly above your slender neck. Your bejeweled dress – “my bling,’’ you called it – attracts every glimmer of late afternoon sunshine pouring through the window. Your makeup – that red lipstick! – somehow improves upon a beauty that has grown since the day you were born. Your smile is blooming and everlasting.

I am outside, beneath the window, staring up. We live for moments such as these, when hopes and dreams intersect at a sweet spot in time. When everything we’ve always imagined arrives and assumes a perfect clarity. Bliss is possible. I know this now, standing beneath that window.

I have everything and nothing to tell you. When you were born and for years afterward, I didn’t worry for what you’d achieve academically. Your mom and I would make that happen. We’d wield the law like a cudgel if we had to. We could make teachers teach you, and we knew you’d earn the respect of your peers.

What we couldn’t do was make other kids like you. Accept you, befriend you, stand with you in the vital social arena. We thought, What’s a kid’s life, if it isn’t filled with sleepovers and birthday parties and dates to the prom?

I worried about you then. I cried deep inside on the night when you were 12 and you came downstairs to declare, “I don’t have any friends.’’

We all wish the same things for our children. Health, happiness and a keen ability to engage and enjoy the world are not only the province of typical kids. Their pursuit is every child’s birthright. I worried about your pursuit, Jillian.

I shouldn’t have. You’re a natural when it comes to socializing. They called you The Mayor in elementary school, for your ability to engage everyone. You danced on the junior varsity dance team in high school. You spent four years attending college classes and made lifelong impressions on everyone you met.

Do you remember all the stuff they said you’d never do, Jills? You wouldn’t ride a two-wheeler or play sports. You wouldn’t go to college. You certainly wouldn’t get married. Now… look at you.

You’re the nicest person I know. Someone who is able to live a life of empathy and sympathy, and without agendas or guile, is someone we all want to know. It worked out for you, because of the person you are.

I would tell you to give your fiancé, Ryan, your whole heart, but that would be stating the obvious. I would tell you to be kind to him and gentle with him. But you do that already, with everyone you know. I would wish for you a lifetime of friendship and mutual respect, but you two have been together a decade already, so the respect and friendship already are apparent.

A decade ago, when a young man walked to our door wearing a suit and bearing a corsage made of cymbidium orchids said, “I’m here to take your daughter to the Homecoming, sir,’’ every fear I ever had about your life being incomplete vanished.

Now, you and Ryan are taking a different walk together. It’s a new challenge, but it’s no more daunting for you than anyone else. Given who you are, it might be less so. Happiness comes easily to you. As does your ability to make happiness for others.

I see you now. The prep work has been done, the door swings open. My little girl, all in white, crossing the threshold of yet another conquered dream. I stand breathless and transfixed, utterly in the moment. “You look beautiful’’ is the best I can do.

Jillian thanks me. “I’ll always be your little girl’’ is what she says then.

“Yes, you will,’’ I manage. Time to go, I say. We have a walk to make.

Jillian and Ryan in their wedding attire standing with their parents on their wedding day

Paul Daugherty is the author of “An Uncomplicated Life,” a memoir of raising Jillian. It’s available on Amazon.com and on Paul’s website, uncomplicated.life.

RELATED: What’s One Thing You Wish People Knew About Down Syndrome?

Do you have a story about your experience with disability or disease? Maybe a moment that made a big impact on you? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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Sharing Pregnancy Stories When Your Child Has Down Syndrome

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I loved being pregnant. Well, not the whole time. I mean the “being told your child may have Down syndrome” thing was pretty full-on and there was the heat… oh god… the heat in the final weeks was torture.

Oh yeah, and the swollen legs and the extreme coughing at the smell of washing powder and toothpaste… now that I think of it, the tiredness was pretty real. The bone-crushing, soul-sapping fatigue that comes from growing one human inside another human was tough…

… But other then that, I absolutely loved being pregnant. I loved feeling myself transform from not-a-mother to mother day by day.

I loved feeling the first flutter of movement then feel the movements grow stronger and more insistent as he, too, grew stronger.

I loved that I could talk to my baby, play him the piano and sing to him knowing he could feel me and hear me. I loved that he preferred to lie on one side and his heel would stick out just below my ribs and I could rub it every day. After he was born I would rub the same heel, remembering he was once inside of me and now he was outside and the ridiculous craziness of how that actually came about.

I loved that my body told me instinctively what to do and how I learned not to question what it was telling me. I loved that after all the stress and the uncertainty about what Down syndrome would mean for my unborn child, I labored and birthed him exactly how my body told me to, exactly as I hoped it would be. I held in my arms a perfectly made, contently happy and healthy baby who needed no intervention, no medicalization, nothing extra from me or the doctors. I loved feeling the surge of happy hormones flood my body when I looked into his eyes for the first time. Yes, he had Down syndrome but he was healthy and perfect and loved.

As my son, Wade, is my only child, his is the only pregnancy I have known. I love talking about it and joining in when others share their pregnancy or birth stories.

I love it when you’re standing in a group at a party and someone announces they are pregnant for the first time. When the room erupts in kisses and hugs of celebration, I remember the giddy feeling I had when I found out I was pregnant. Stories start flowing from other parents about their own pregnancies and what to avoid and what to be on the look out for…

… And then there’s me.

Me…

Knowing full well my pregnancy and birth was amazing…

Knowing full well nothing I did prior to or after conceiving Wade caused him to have Down syndrome…

Knowing I wouldn’t change a thing about Wade…

… And knowing full well not everyone knows that.

Knowing I am the one in the room silently reminding the new mother that sometimes not everything they plan for goes to plan. When everyone starts reassuring a worried new mom about the upcoming scans and tests by saying everything will be fine, I can feel the unspoken exception of me and my scans and tests.

I know Wade is healthy and smart and funny. I know nothing I ate or didn’t eat caused him to have Down syndrome, but I also know how weird it must look to a new mother when I start giving out pregnancy advice.

I am genuinely proud of Wade. I absolutely love showing him off because he is hands-down the coolest person I have ever met. Unfortunately I still find myself hesitating to share my joys sometimes because I know that people don’t see things the same way I do. Occasionally I will see a little boy with a familiar style of blonde hair or the same quiet calmness as Wade and I will feel the urge to tell his parents how alike our kids are. But I know the look I might get when I do that… As though I am saying, “Your child looks/acts/behaves like he has Down syndrome.”

As though that is something bad or an insult.

As though that is all there is to my son.

This is the pervasive nature of disability, unfortunately. That parent might not automatically see I am talking about my son’s qualities and features instead of his diagnosis. I believe it wouldn’t be automatic for them to presume I am just as proud of my child as they are of theirs.

It’s a shame that the automatic reaction to disability is a negative one. Yes, my pregnancy didn’t go to “plan,” and yes, receiving those test results were some of the hardest days I have endured, but they were hard because I used to live in a world without Down syndrome, too. I knew nothing about it except what I was told to believe. I didn’t know how much has changed about Down syndrome. I didn’t know how capable he would be or how interesting it would be being his mom. I had no idea how much I would learn and change as a person.

It’s a weird feeling when pregnant women tell me how happy they are that their scans have come back with no issues. Don’t get me wrong, I am happy for them! Every new parent wants to hear that their baby is healthy, but it is impossible for me to hear anything other than how happy they are that their baby is not “like mine.” It would be unrealistic of me to presume that parents-to-be would sit waiting for their test results with fingers crossed, hoping the baby has Down syndrome. I understand that when your little train of expectation jumps the tracks and ends up on a line you had no intention of traveling, it can come with a jolt and a shock. But when I look at my little guy now, then think about myself doubled over with grief and shock on the floor when I was told of the diagnosis, I can’t match the two up anymore.

I know it’s hard for people to understand I’m not devastated about Wade having Down syndrome. I’m not feverishly making lemonade through gritted teeth because I was handed a giant basket of lemons. I am genuinely happy and wish I didn’t have to doubt myself when I talk about it with others.

For me, Down syndrome just is. Four years down the track, I’ve realized it is a thing that makes him different and a thing that has changed me and my world. But really, it’s just a thing.

It’s a thing I will share about my pregnancy because it’s a huge part of my story. It’s a thing I will talk about when I remember him as a baby or I think about him entering school, or plan for his future. It’s a thing that will cause me to lie awake at night with worry sometimes and cause me to grin uncontrollably with pride and happiness on others — in the same way all parents worry or gush over their children at different times.

It’s a thing that tells me everything and nothing about Wade at the same time.

Follow this journey on Embracing Wade.

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For the First Time, Gap Will Feature Models With Down Syndrome in Campaign

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Kayla Kosmalski is on her way to Florida to walk in the clothing company Gap‘s first show that features models with Down syndrome.

close up of kayla
Courtesy of the Princess Kayla Facebook page.

Kayla, 9, has Down syndrome and landed the job with Gap after seeing a posting for the opportunity on the Changing the Face of Beauty Facebook page, an effort to get brands to feature people with disabilities in advertisements. The Gap fashion show will take place on Saturday, August 22, at a Gap store in Miami.

It’s part of the launch of Ellen Degeneres’s new clothing line for kids in collaboration with Gap, GapKids x ED.

kayla modeling white jacket
Courtesy of the Princess Kayla Facebook page.

“I am just ecstatic for this opportunity for Kayla,” her mother Amy Kosmalski told The Mighty while aboard her plane to Miami and awaiting takeoff. “The campaign is just incredible. It’s showing the world that our kids are more alike than different and they deserve the same opportunities as the other kids do. Yes, Kayla has Down syndrome, but she’s smart and funny and sassy like all other kids.”

“And ‘drama!’” Kayla added. Yes, she’s also dramatic, her mother confirmed with a laugh. Kayla’s favorite parts about modeling are waving, blowing kisses and “rocking the stage.”

kayla in heart outfit
Courtesy of the Princess Kayla Facebook page.

Changing the Face of beauty has put 14 girls of all abilities in touch with the Gap campaign, three of whom (including Kayla) have Down syndrome. There is also a girl with a limb difference named Fern and a girl named Charlize who has a chromosome abnormality. They will walk the runway at two times on Saturday.

“We could not be more thrilled to be a part of this,” Katie Driscoll, co-founder of Changing the Face of Beauty, told The Mighty in an email. “The opportunity to participate in a event like this is a huge win for our organization as well as these girls who happen to have disabilities and the girls who do not have a disability. Our message is simple: Kids are kids regardless of their ability, and they look great when given the opportunity to be featured together. This gives us the opportunity to really show the world what is possible when all kids are represented in advertising.”

Check out Kayla’s Facebook page or the Changing the Face of Beauty Facebook page for more information on all the other models taking part in the show. 

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9 Adults With Down Syndrome Find Out They've Won Academic Scholarships

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A new video is showing the world exactly what it looks like when dreams come true.

Ruby’s Rainbow is a nonprofit organization that provides scholarships to adults with Down syndrome who want to pursue post-secondary education. Students ages 18 and over can earn scholarships worth up to $3,000 (one applicant each year is awarded $5,000), and the money can go toward college, community college, vocational training or any other program of the student’s choosing.

It is our goal to create awareness of the capabilities of these amazing individuals and help them achieve their dreams of higher education,” the organization’s website reads.

It can be difficult to describe how much a little extra support can mean for students with special needs, so Ruby’s Rainbow decided to show people. On August 20, the organization released a two-minute video (below) featuring some of its 2015 scholarship recipients in the moment they each learned they’d be receiving a scholarship. Student after student excitedly rips open an envelope and beams into the camera as they announce, “I got the scholarship.”

The students in the video below now have an opportunity to show the world their true potential. But more important, they have a chance to fulfill their own aspirations.

I feel very good,” one of the scholarship recipients says in the video below. “And I am really proud.”

Take a look at the video below.

To learn more about Ruby’s Rainbow or apply for one of the 2016 scholarships, visit the organization’s website.

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