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10 Things to Say When a Baby With Down Syndrome Is Born

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When I wrote “10 Things Not to Say to a Parent of a Child With Down Syndrome,” someone emailed me a day or two later.

“My father and I were talking about your post about 10 things not to say to a parent of a child with Down syndrome, and we were wondering … What should we say?  … Please, help us. We really want to know.”

I was touched by this person’s desire to learn about such a delicate subject.

I’ve given this some thought. I know every parent is different, so not all of these on my list will resonate with everyone.

Here’s my list of 10 things to say to when a baby with Down syndrome is born.

1. How are you doing?

After my daughter Polly’s birth and diagnosis of Down syndrome, I appreciated friends and family asking how I was doing. I realize not everyone would want to talk about their feelings, but it meant a lot to me when people reached out and “went there.”

2. He/she has your eyes/nose/hair etc…

One of the things I worried about after Polly’s birth was that she wouldn’t look like the rest of our family. Of course, she does. Sure, it’s noticeable that Polly has Down syndrome. Her eyes are almond-shaped. Her nose is a bit flat. But she also has blonde hair like her sisters. She has my smile.

At first, I just wanted to know that although she had Down syndrome, she was my baby.

3. How’s her health?

Most people are aware that an extra chromosome on the 21st pair brings with it added medical concerns. I was fine when people asked about Polly’s health. It provided common ground, something to talk about during awkward pauses. And of course, friends and family asked so that they could pray for her health.

4. You are going to be a great parent.

I needed to hear these words. I was afraid. Down syndrome was new. I would have loved the reassurance.

5. We brought the baby a present.

Our daughter was sick right after her birth for three weeks. We went from having a baby to having a sick child. Polly didn’t get gifts, and we didn’t get cards with hearty congratulations on the birth of our child.

If you are going to see a family after their baby is born with Down syndrome, bring a cute outfit, or balloons, or a stuffed animal. In other words, celebrate new life.

6. I am bringing you a meal Tuesday at 6 o’clock.

Offer practical help. And don’t say, “What can I do?” or “Let me know if I can help.” Parents are too out of it to ask. Just tell them you are bringing a meal. And be specific. Give the day and the time. The parent will check it off her list. Being concrete will put her mind at ease.

7. Can I hold him/her?

Pay attention to the new baby. Hold him. Cuddle him. Love on him. Pray for him. Your tangible, bodily acceptance will have a great, positive effect on the family.

8. We’d like to take the other kids out to a movie on Saturday and then have them over for pizza.

Once again, tangible help. If there are other children in the family, chances are they are getting lost in the shuffle. Schedule a time to take the kids out to do something fun. Again, tell the parents when, where and for how long.

Another tip: take them for a full afternoon or for the day. Parents need time together and with the baby, and they need to know their other kids are attended to.

9. You make beautiful children.

I always say this to a new parent, and I always get a huge smile in return. Parents crave assurance that they did well, because trust me, in the beginning they might not be sure when Down syndrome is in the picture. Compliment the baby. Fuss over her. And compliment the parents on a job well done.

10. Congratulations on the birth of your baby!

I don’t recall getting congratulated. Those first days are squiggly in my mind, but oh how I’d love a story to pop up of someone embracing me and congratulating me on this new little life I produced with what I believe was God’s help.

Make a big deal over the baby. It’s a baby! And she/he and the parents deserve all the love, attention and excitement that comes with new life.

Gillian's family sitting on the grass in a park

Parents, what would you add?

Follow this journey on Gillian Marchenko’s site. Read about her memoir, “Sun Shine Down,” here.

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Why I Want to Warn the Woman Who Took This Photo

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When tragedy strikes, I always think of those seemingly normal moments just before. How the person has no idea how the next few minutes are about to change their life forever.

The picture that brought it all back

This week, Facebook reminded me of those quiet moments in my life a year ago. It was a simple picture: my husband with our baby daughter on an air mattress in our new home in New Mexico. We were so miserable those first few days in Alamogordo. Being an inexperienced military couple, we cried when we drove into our new town. We let the dust and one too many fast food restaurants cloud our vision. We thought the dark and smelly rooms in TLF (temporary lodging facility) were also to blame. So we waited it out in our new home, on an air mattress, until the movers came.

The view just outside of Alamogordo… yeah, it was not as bad as we made it out to be!

I thought our lives were upside down when I took that picture. I had no idea what was coming.

A week after settling in, I couldn’t shake the feeling that something was off. I still remember everything about August 27, 2014.

I remember I skipped breakfast, which I never do. I remember joking around with the nurse as she asked us a host of ridiculous questions because I was a new patient. I remember the ultrasound tech asking us if we were ready to know the sex, and when she said, “It’s a boy,” my husband cried. I remember the nurse coming in after, “Oh, everything must be fine because the doctor would be in here if something were wrong.” I remember him walking in seconds later. I remember him telling us that the slightly enlarged nuchal fold was consistent with Down syndrome. I remember my whole body feeling like it was on fire. I remember thinking, “No, I can’t be a special needs mom. No, I’m not cut out for that. The odds are one in thousands, you’re being ridiculous.”

Even though I know the ending of this story, even though I know it is a happy one, it doesn’t change the very real pain I felt that day. It doesn’t take away the unthinkable things I thought.

I thought August 27, 2014 and the days that followed would be the great tragedy of my life. I was wrong. Look at him. I was so wrong.

baby smiling while lying down with a knit blanket

Our son having Down syndrome is not a tragedy, but it doesn’t take away the fact that we thought it was. The pictures of the days before my son Anderson’s 20-week ultrasound still take my breath away. It’s not him and it’s not Down syndrome that make looking back on that time painful. It was our ignorance and the overwhelming fear of the unknown.

Because of doctors, therapists and the advocates who have gone before us, the world is becoming a much better place for people like our son. But there is more work to be done. Until schools start treating all children equally, people with Down syndrome won’t be viewed as equals. And parents receiving a Down syndrome diagnosis will grieve because they will think the extra 21st chromosome has stolen their child’s life away.

I want to jump through this picture and warn the photographer of what’s coming. I want to spare her some grief. But I would tell her this: you are about to receive some news, it will hurt for a while, but it will get better because you will educate yourself. And once he’s here, you will realize both your son and his diagnosis are extraordinary gifts. If you let it, your life will become bigger than you ever dreamed it could be.

A year from now, you will no longer be filled with grief. Instead, you will be overflowing with hope.

One year later…

Follow this journey on News Anchor to Homemaker.

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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How Hugh Jackman Honored a Fan With Down Syndrome Who Passed Away

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Hugh Jackman found a touching way to honor one of his fans who has passed away.

The actor recently posted a photo on Instagram with the sister of a huge fan of his. Marie Lozano‘s brother, Jeffery, lived in the Philippines and had Down syndrome. He passed away two years ago, but his sister kept his memory alive by giving Jackman one of his drawings of the character Wolverine from the “X-Men” movies.

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Via Instagram

Jackman posted the following on his Instagram, along with the photo.

Today I had the great pleasure of meeting this lovely lady, Marie Lozano from the Philippines. Her brother, Jeffrey, had Down Syndrome. He passed away 2 years ago. Marie shared with me that one of Jeffrey’s joys in life was painting. When he lost the use of his hands he continued to paint with the brush in his mouth. I accept this gift in Jeffrey’s honor. May his spirit live on.

Lozano, a journalist for ABSCBN in the Philippines, was interviewing Jackman about his upcoming film “Pan” when she decided to give him the painting and tell him about her brother, BuzzFeed reported. Her interview with Jackman happened to coincide with the two year anniversary of her brother’s passing. The Wolverine painting was one of the last ones Jeffrey Lozano did.

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Via Instagram

It was fate that I got the assignment to interview Hugh on the day of Jeffrey’s second death anniversary,” Lozano wrote on her Instagram. “I simply wanted him remembered by giving one of his mouth paintings of Wolverine to Wolverine himself. I did not expect that he would be honored throughout the world with this small gesture.”

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Via Instagram

Jeffrey to me is a real life superhero,” Lozano wrote. “He had an unwavering spirit to take on life’s battles. Hugh’s character was an inspiration to my brother and I didn’t expect to inspire the man that inspires millions with Jeffrey’s story. The messages mean a lot to my family and I. Thank you for helping his spirit live on.”

 

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18 Myths About Down Syndrome People Affected by It Would Like to See Busted

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About 400,000 Americans have Down syndrome and about 6,000 babies with Down syndrome are born in the United States each year, according to the National Down Syndrome Society. That makes Down syndrome the most common genetic condition.

Despite how common it is, there are still a lot of myths and misinformation surrounding Down syndrome. With that in mind, The Mighty teamed up with the National Down Syndrome Congress to ask our readers affected by the condition to share the myths they’d love to see busted.

This is what they had to say: 

1. “People with Down syndrome are not always happy.” — Onya Rohrer

Meme reads: People with Down syndrome are not always happy.

2. “They can’t learn… Bull! My daughter graduated from her local high school, attended culinary school while in high school, went to every prom and homecoming and works at Wendy’s. Yes, she has limitations, but she ‘can.’ Have you ever noticed ‘can’t’ isn’t in the dictionary?” — Susan Harrison Herscher

3. “I hate the expression that ‘He/She suffers from Down syndrome.’ Unless they are ill, they don’t suffer. My son as well as the rest of the population with Down syndrome are very happy, contented young people who enjoy life to the fullest.” — Lynne Aquamarine Clarke

Meme reads: I hate the expression, he/she suffers from Down syndrome. Unless they are very ill they don't suffer.

4. “‘People with Down syndrome are slow mentally’ is the biggest myth I’ve heard. My son picks up on things quickly and, although he may have been slower to develop physically, his thought process is sharp. All children with Down syndrome develop at different rates, just like so called ‘normal’ children.” — Christy Whyman

5. “Expecting people with Down syndrome to all be the same is ridiculous. My daughter looks and acts more like me. She is growing and developing at her pace. I have had people remark that she seems more ‘energetic’ and ‘attentive’ than other people with Down syndrome. I have become very good at the art of the polite explanations of differences among a special population.” — Kyphanie Opdahl

Meme reads: Expecting people with Down Syndrome to all be the same is ridiculous.

6. “People think it’s the mother’s fault a baby is born with Down syndrome. I don’t think people take the time to understand how it happens and that it’s nobody’s fault. And it’s wrong to pass judgment when you’re not educated on it.” — Breanna Fragoso

7. “All kids with Down syndrome do not have the same personality.” — Margaret Barry Sharp

8. “Having Down syndrome doesn’t make a person different from anyone else. It doesn’t mean they aren’t smart. It doesn’t mean they aren’t capable of learning or achievement. It doesn’t mean they won’t live a full life and it doesn’t mean they won’t be able to have independence. And it certainly doesn’t hold anyone back from accomplishing their dreams. I want people to see that it’s a blessing to have Down syndrome. That it is a beautiful thing that isn’t scary, or a ‘curse.’ People who have Down syndrome have a wide range of capabilities and shouldn’t be seen as any different from anyone else.” — Megan Campbell

meme reads: Having Down syndrome doesn't make a person different from anyone else.

9. “Only older people have babies with Down syndrome… I was 18 and my husband was 19 when [our son] was born.” — Amber Dawn Little

10. “‘Oh they just give the greatest hugs!’ Yes they do, but should not be requested to hug people they don’t know. They must know stranger danger just like any other child.” — Susan Pentony Cully

11. “Even though individuals with Down syndrome may have the same facial features, they will still look like part of the family. My daughter and son look very much alike regardless of Down syndrome features.” — Amanda Rensing-Scauzillo

Meme reads: Even though individuals with Down syndrome have some the same facial features, they will still look like part of the family.

12. “I’d like to crack the myth that it’s a syndrome. ‘Syndrome’ makes it sound like a contagious disease. Does everyone who’s born with red hair have a syndrome? What about those born with dimples? Do they have a syndrome because there’s a dent in their face? I say it’s all in how we perceive it. We’ve been around long enough to recognize that no single person is the same. When will we come to terms with the fact that some people think faster or speak clearer than others? But dang it, it doesn’t mean they have a syndrome that makes them unworthy of being treated with dignity.” — Jamie Awtry McClintic

13. “‘People with Down syndrome are a burden to their families.’ I have found it to be quite the opposite, in which our child has been life’s best teacher.” — Kim St Andrassy Kann

meme reads: People with Down syndrome are a burden to their families. I have found it to be quite the opposite in which out child has been life's best teacher.

14. “‘They’re the happiest people you’ll ever meet.’ Yes, my son is happy. However, he also feels sadness, fear, frustration, anger and hurt. This stereotype minimizes the full range of emotions that people with Down syndrome face daily. It’s a dangerous stereotype that can lead others to believe they aren’t capable of feeling anything but happy. And that belief can lead to mistreatment in a variety of ways.” — Zach N Zoey Facebook page 

meme reads: Yes, my son is happy. However, he also feels sadness, fear, frustration, anger and hurt.

15. “That they can’t outsmart you. Ha! My son can buy movies on demand or find a video on YouTube the minute my back is turned. He’s a smart cookie.” — Elena Berzins

16. “‘Children with Down syndrome are only given to special people.’ That’s not true! Our life wasn’t very special until we had our son with Down syndrome.” — Kelly Luster Vega

Children with Down syndrome are only given to special people. That's not true! Our life wasn't very special until we had our son with Down syndrome."

17. “‘Your child will not walk, talk or do anything ‘normal’ kids do.’ They’re so wrong!” — Sandra G Hair Lanham

18. “That Down syndrome is something to mourn.’ Sure, you may grieve the baby with 46 chromosomes that you thought you had, but you quickly come to realize that life is more fulfilling and beautiful with 47.” — Kristina Johnson

meme reads: That Down syndrome is something to mourn. Sure, you may grieve with the baby with 46 chromosomes that you thought you had, but you quickly come to realize that life is more fulfilling and beautiful with 47.

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Teen With Down Syndrome Brushes Off Bullying and Breaks Into Modeling

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Gigi Cunningham dreams of having a career in the entertainment industry, and with a handful of modeling jobs already under her belt, the spunky 17-year-old is on her way to doing just that. But what’s even more impressive is that she’s using her talent to raise awareness for the Down syndrome community and to put an end to bullying.

model gigi cunningham
Image courtesy of Erica Butler/Majestic Time Photography

On October 10 Gigi will serve as one of three representatives in the Buddy Walk in Urbana, Illinois, which is a National Down Syndrome Society event. Later in the month Gigi will walk the runway in the 2015 Be Beautiful Be Yourself Fashion Show in Denver, Colorado, which is her biggest achievement yet.

The Be Beautiful Be Yourself Fashion Show is put on by the Global Down Syndrome Foundation (GDSF), and it is the largest fundraiser for Down syndrome in the nation, according to the event’s website. More than 1,200 guests attend each year, and it has raised $9.5 million for Down syndrome research, medical care, advocacy and education.

photographs of model gigi cunningham
Image courtesy of Erica Butler/Majestic Time Photography

Despite her recent success, several years ago Gigi was mercilessly taunted by her peers at school, Gigi’s mother, Erica Butler, told The Mighty. Gigi came home in tears after being teased by a group of girls one day, but after a long talk the two figured out a way to move forward.

“Gigi understands that there are some cruel people in the world, but that you do not let that tear you down as a person,” Butler told The Mighty in an email. In September Gigi passed out anti-bullying information at a Down syndrome event at the Labor Day Parade in Danville, Illinois, and she’s hoping to do more advocacy work in the future. Butler added the Gigi also watches DVDs from the Pacer’s National Bullying Prevention Center and reads their anti-bullying literature.

While she’s too busy to be bothered by bullies these days, Gigi is aware of the fact that she’ll face new challenges within the entertainment industry.

“Many doors will close and many will open,” Gigi told The Mighty in an email. “Always approach your obstacle with a ‘I can’ attitude and with a smile on your face because you are worth it. My belief is that you can do all things through Christ and with prayer nothing is impossible. Never give up and if no one else believes in you I do. We are winning. I am determined to help change the face of beauty.”

photographs of model gigi cunningham
Image courtesy of Erica Butler/Majestic Time Photography

“Gigi has been turned away from many opportunities because she has Down Syndrome,” Butler added. “She has been told she is not what we are looking for and that people like that should stay at home, or she is not beautiful. People have said many cruel things and Gigi does not let that stop her from what she is destined to be and that is greatness. Every morning before she goes to school she looks in the mirror and says I’m beautiful and we high-five each other.”

Not surprisingly, fellow model Madeline Stuart is one of Gigi’s biggest sources of inspiration. Gigi was inspired by Stuart to pursue her dreams of being a model and actress and she hopes to meet her one day.

“She is such an inspiration to many girls with Down syndrome and special needs and challenges,” Gigi told The Mighty. “No matter what we are beautiful, confident and can do anything that we set our minds to.”

photograph of model gigi cunningham
Image courtesy of Erica Butler/Majestic Time Photography

So what does Gigi want the world to know?

“When people read my story I want them to know that I can do anything, [and] with social media the world will see my true potential and beauty,” she told The Mighty. “I want the modeling world to give me a chance also and I guarantee you will not be disappointed. I want the world to really change how they perceive people with disabilities and continue to embrace their beauty. Never set limits on your child… they just might exceed them. People with Down syndrome are beautiful, smart, creative, loving, confident and it should be displayed.”

“I love that I can inspire others to make a change and love the skin they are in,” she concluded.

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When a Teacher Made an Unexpected Gift for My Son With Down Syndrome

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As I dropped off my son at school this morning, his teacher pulled me aside. “He only knows six colors.”

My son wriggled out of my grasp as I struggled simultaneously to straighten his glasses, rub this morning’s smoothie from his face and add up the colors of the rainbow. I looked back at her, tacked on black, white and brown to my running total, and responded, “He actually knows at least 10 or 11.”

“En Español,” his teacher replied. “He only knows six en Español.”

Now she had my full attention.

I stood up straight and gave her a dubious look, “What do you mean? He knows his colors in Spanish?”

“Oh, yes! Of course, he does!” She went on. “He not only knows his colores, but he can count to cinco — sometimes diez if he’s willing.”

At that, she lifted him up for a demonstration. “Oo-no, doh, tray, qua-ro, see-no!” he said with glee.

All at once, a familiar sensation surged through my body. A feeling of intense pride and joy commingled with validation (all lightly sprinkled with the guilt of my incredulity).

It’s not that I doubted his ability. I know my boy is sharp as a tack — he knows his numbers, shapes, colors, animals and more. It’s that he just turned 3 a few days ago. And the concept of a foreign language was introduced only last month. And he just happens to have Down syndrome.

As I processed this new information and secretly chided myself for not speaking more Spanish at home, his teacher said she had something just for him. She went to her desk and returned with a laminated folder that contained twelve crayon cutouts and the corresponding Spanish translation. It was titled, “Colores en Español.”

Brooke Conley.3-001

She then held out a stack of perfectly matching laminated cutouts, each trimmed precisely and uniformly and held together with a silver paper clip.

“This is for you to keep,” she said. “He’s very good at matching and loves learning new words en Español. I thought he could practice at home. He is smart and it is good for him. Sometimes he doesn’t want to do the work, but when you push him, he will show you what he knows.”

I thanked her profusely and kissed my boy goodbye. I clutched the folder to my chest and made it to the car before the tears came.

How could this woman possibly understand that the aide she had created for my son was actually a gift in disguise? To the outsider, it was simply a flimsy manila folder that contained a few laminated crayon cutouts. But to me it was an archive, overflowing with belief, equality and encouragement.

It wasn’t just the fact she had spent her personal time meticulously crafting an activity tailored to my son’s interest in all things rainbow. It wasn’t the neatly cut lines or the steadily scripted words or the fact that there were a dozen children in her class and she had made this offering only to one.

It was because other than my husband and me, no one has ever had such direct and blatant expectations for him. Through her contribution, I realized she instinctively and completely understands my son is not defined by any diagnosis or therapeutic buzzword or illness.

In one simple gesture, she counteracted all of the labels he has been strapped with in the past. She didn’t take the time to make this gift for my son because he’s delayed or cognitively impaired or special. She made it because he’s smart and curious and full of promise. She made it because he sometimes needs to be reined in a bit, not because he has Down syndrome, but because he’s a busy, mischievous, typical 3-year old. She made it because she believes in this particular blue-eyed, blonde-haired little boy who likes to count and color — in any language.

Sometimes, I encourage my son to show off his skills. I beam with pride as he conveys what he knows through slightly garbled words and a flourish of his little fingers. Until today, I thought putting him on display was a form of education and outreach — proof to those who dare to question his worth. “See here? This child is truly more alike than different.”

But now I understand my blandishments for what they really are: desperate pleas for the world to see my son as I do — unique, brilliant and capable.

Today, his teacher unknowingly answered my supplication in the form of a manila folder.

A folder that said, “I see you.”

Te veo.

“And you are loved.”

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