What I Tell New Parents Blessed With a Child With Down Syndrome

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Over the years, I’ve been asked numerous times by friends and acquaintances to speak to a couple recently blessed with a child born with Down syndrome. Some parents who receive the news are devastated at first — they might be scared, then angry, then sad, then scared again.

Nothing I can say can soothe any early grief these parents might feel. I believe it is the most personal experience a couple can have, and I cannot presume my words will mean much at all.

Everyone is different. Trying to tell new parents “This is how it is” is a fool’s errand. I don’t even try. What I do say every time is, “This is how it is for us.”

I wrote “An Uncomplicated Life” because I wanted new parents to see something positive. When our daughter Jillian was born, all Kerry and I wanted was for someone to tell us everything would be OK. Instead, we got loads of pamphlets telling us all the things Jillian would not do. We threw them in the trash. We would allow Jillian to define herself.

The book tells you we are OK. This is what I tell new parents: Your child will teach you more than you teach him or her, and everything you learn is essential stuff: patience, kindness, the need to live in the moment. I believe that unconditional love owns a special place in the lives of people with Down syndrome, and all who choose to embrace them.

My mother has called Jillian “the best Christian I know.” Not because we are an especially religious family (we aren’t), but because she believes Jillian embodies lots of qualities that would make God proud.

Who wouldn’t want to have a child like that?

I tell new parents their new child will give them gifts of perspective and tolerance. I tell them their child will force them to slow down, and because of that, blessings actually will be counted. I tell them anything is possible when love is involved.

I don’t kid them. I tell them it can be hard work. Early intervention might run them ragged. IEPs could test every inch of their patience. Sadness might happen as their child grows if friends drift away.

But here’s the thing: Raising any child is hard. Raising Jillian was just a different kind of hard. But oh, the rewards.

I tell new parents they will marvel at the little wins. The human spirit is a marvelous thing, a soul engine capable of just about anything. Wait until your child ties his shoes for the first time or rides a two-wheeled bike or graduates high school. Those heart-soars are unlike anything else.

little blonde girl at beach in bathing suit
Paul’s daughter Jillian when she was a little girl

So many of life’s great moments are assumed, lost to the speed at which we live. I believe we parents of children born with Down syndrome learn not to assume, but to savor. What a gift.

In the song “Beautiful Boy (Darling Boy), John Lennon says, “Life is what happens to you while you’re busy making other plans.” Not for us. Thanks to our kids, we live more realized lives.

That’s what I tell parents.

We’re only as good as the way we treat each other. Jillian taught me that. She’s the best person I know. She was born with Down syndrome. How lucky we were then, even if we didn’t know it. Jillian is 26 now, married, fully employed and a high school graduate who attended four years of college.

Could we have imagined that the day she was born? Not that first day, no. But every day thereafter. This is what you have to look forward to, parents. I promise you.

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.

The Mighty is asking its readers the following: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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. 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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My Son With Down Syndrome Inspires Me to Be a Better Mother

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You know you’ve got a time management problem when you have three toothbrushes dotted around the house because when that five-minute window opens, you want to be ready, baby.

You tug on mismatched socks because your dryer is a power eater and the actual pairs are all buried somewhere in those overflowing laundry baskets teetering in the corner. “It’s not dirty enough not to wear” becomes your mantra. You don’t remember the last day you haven’t heard the washing machine running. At least it’s productive white noise.

And so you live. And you grow. And you thrive. And you teach.

And you mother.

Your kid has extra needs, and you fulfill them unflinchingly. It is mostly unnoticeable because you just do what you need to do. And you put yourself first only when you are falling. And you rarely fall because that very same kid lifts you and lifts you and lifts you. And he inspires you because that journey can be more difficult than it is for a typical kid. He inspires you because you can see him thinking and watch him when he’s pissed off that he’s failed at something. And then he goes back and frowns and grinds his teeth and tries again and again and again ’til he gets it right. And he always gets it right eventually.

He is so driven compared to other people, and so by all that is good and holy, he inspires you.

You know you own an iron but haven’t got a clue where it is. Truth be told, if you found it, you may think it better put to use as a door stop. Some part of you is always decorated with food anyway.

Every time you go clothes shopping, you end up with four new developmental toys for your son… and another toothbrush. Plus a few for him. Just because. Some of your clothes were bought in the ’90s.

You go out for a run to clear your head and find yourself practicing Makaton to your playlist. Even though it gets a bit weird when AC/DC comes on, this still makes you realize how much sign language you can pick up from television. And now you want to get home and practice with him. Maybe without the innuendo-laden hard rock, but still.

Because you live and you grow and you thrive when you mother. As you teach him, he teaches you. The love and the discipline, that greatest yin and yang of all, the give and take of this unwavering bond.

The fridge is packed with food for Captain Picky Eater, yet you and your husband are on your third takeaway of the week. “We’re out of Weetabix” becomes close to a national emergency. You have bananas in the house but dare not eat one, lest he run out. Same goes for yogurt. The thought that you should shop for yourself as well hasn’t crossed your mind in a few months. It usually only does become a thought a couple days before payday when you’re eyeing the ramen noodles at the back of the drawer because the takeaway funds have dried up.

You resolve on New Year’s Day that this year, I’ll get enough sleep. I’ll put him to bed and switch off the laptop and rest and rest and rest. But on day one, zero hour, you reach the bottom of the stairs and forget. And you Google, and you blog, and you read, and you shop. Then it’s 3 a.m. Then you hear him stir on the monitor and you stop everything to be sure he doesn’t require you. If he did, you’d leave everything cold and go sleep beside him until he dropped off again. Sometimes the stirring means a nappy change is in order. And you rush up to sort him out ASAP to ensure he can get a decent sleep. So you can get a decent sleep. And thank God he usually does sleep.

He is your world.

You are his mother.

You take care of yourself just enough to ensure you can help him soar. You lean on your spouse, your friends, your family for support when you need to switch off, but the fact remains — he is your world.

You wouldn’t trade him for anything. The only trade in is time for you, which you put aside because, frankly, he is entirely worth it. That he is a joy to be around is merely a bonus prize. Except when he is Captain Crabbo. Then you want him to go to sleep and leave your ears in peace for a while. And then you only go and miss him, Crabbo or not. You check on him in the night and you linger. Just to watch him sleeping, you linger. Even when you can at long last go to sleep…

You linger.

You look after yourself by measuring his progress today, since yesterday, and know you are doing a good job. This grows you.

You look after yourself by capturing joyful moments and knowing you are raising a happy boy. Your favorite pastime (aside from actually finding time to brush your teeth) is watching him think. You soar when he succeeds at anything those long-ago doctors told you, “He won’t…” Yes he bloody will. This grows you.

You look after yourself by marching with him to “The Grand Old Duke of York,” and “I Want a Hippopotamus for Christmas” and the intro to “Gigglebiz”… hell, you march to the food chopper and the vacuum in this house. Anything and everything that makes him smile. You march for minutes, then hours, ’til your calves cramp and your feet ache and you can’t kick once more or your leg will actually fly off. He watches himself in the mirror marching, and you grin at him, “Good boy, look at you go!” and he grins back and launches those knees virtually to the ceiling, and you wish you had champagne to celebrate.

Alas, you grow tired of marching and sit. He complains.

You get up and march. Because.

The grand victory hidden in the minutiae. The leap masked in the small step. These all massage your mind. These all smooth the worry from your forehead. As he grows, so too do you.

He is your world. You are his mother.

Maxine's son at a water park
Maxine’s son at a water park

Follow this journey on Down In Front, Please.


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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Reality TV Star Under Fire for Meme of Girl With Down Syndrome

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Valentin Chmerkovskiy, a dancer on the reality show “Dancing With the Stars,” has come under fire after posting a meme on his public Facebook page.

The meme read, “Letting your kid become obese should be considered child abuse,” and it showed a picture of a child who turns out to have Down syndrome.

Meme showing over-weight child drinking a soda.

Her name is Skylar and she’s from Robertson County, Tennessee. Her family found out about the meme after her sister Harley Eden saw it online and realized it was Skyler, WKRN News reported.

I couldn’t believe it when I saw it,” Harley Eden, Skyler’s sister, told the outlet. “[It]makes me wonder what kind of people are out there. It makes me sick.”

Adults with Down syndrome are more likely to be obese than those without the condition, according to the National Down Syndrome Society. It’s often the result of untreated hypothyroidism, a condition in which the thyroid gland doesn’t produce enough thyroid hormone.

Chmerkovskiy’s post doesn’t mention Down syndrome at all. His caption read:

I am truly sorry for the lack of sensitivity… but on some level I have to agree. Raising a child is the hardest thing in the world, I know, but being negligent when it comes to their nutrition is a crime. The lifelong obstacles and health issues you place on your child because of it can be devastating moving forward in their life. You’re handicapping your kid, and they’re defenseless, they don’t know better, that’s why you’re there… anyway I’m just a childless preacher, but here’s some food for thought. #‎nopunintended

The Facebook post garnered hundreds of likes and shares but has since been removed.

The family doesn’t know who took the original picture of Skylar, but they believe it is from years ago when Skylar, who is now 16, was around nine or 10, WKRN News reported. Mitchell said her daughter has battled with her weight since the age of four and now attends a weight management clinic at Vanderbilt University Medical Center.

Get more on the story from the video below: 

 

The Mighty reached out to Chmerkovskiy for comment but are yet to hear back. 

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Mom Designs Glasses for People With Down Syndrome

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One mother in Burton, Ohio, turned her daughter’s need into a career helping others.

Erin Farragher, now 16, needed glasses when she was about 20 months old. Her mother, Maria Dellapina, set out right away to find the perfect pair but soon found conventional frame designs didn’t properly fit Erin, who has Down syndrome. People with the genetic condition often have unique facial features such as low nose bridges, small ears and wide temple areas.

Erin at Tina Brown's Women in the World Salon in San Antonio, where Toyota's Mother of Invention award was announced in December. Image courtesy of Maria Dellapina.
Erin at Tina Brown’s Women in the World Salon in San Antonio, where Toyota’s Mother of Invention award was announced in December. Image courtesy of Maria Dellapina.

“[Conventional glasses] would fall down her nose and just didn’t sit right on her face,” Dellapina told The Mighty. “She didn’t want to wear them.”

At the time, Dellapina had nearly 25 years of experience making glasses, dispensing frames and lenses and working as a frame buyer. Still, despite her connections in the industry, she just couldn’t find a pair she could alter to fit Erin, even after making extensive adjustments. So she began designing them herself. 

“It was very frustrating because I needed this for my daughter,” Dellapina told The Mighty, “and I knew I couldn’t be the only one.”

She wasn’t.

Dellapina started talking to other parents of children with Down syndrome and realized a real need existed for glasses that properly fit. But she couldn’t find a manufacturer willing to make her designs. As a single working mother with four kids, two of them toddlers, Dellapina had little time or money to invest into getting the frames made.

Dellapina with her 29-year-old son Anthony at a photo shoot for "Women in the World." Anthony is a special education teacher.
Dellapina with her 29-year-old son Anthony at a photo shoot for “Women in the World” in December. Anthony is a special education teacher. Image courtesy of Maria Dellapina.

Then, in 2007, Erin became ill after an ear infection turned into a dangerous infection further complicated by her allergies to antibiotics. Dellapina lost her job, and ultimately decided she had to work from home to take care of Erin. It was time to start the business.

She finally found a manufacturer in South Korea willing to make the glasses, and a friend lent her the money to for the first prototypes.

Dani Taraba, 9, models the Specs4us Erin's World Frame glass line, designed by Maria Dellapina.
Dani Taraba, 9, models the Specs4us Erin’s World Frame glass line, designed by Maria Dellapina. (Chuck Crow/The Plain Dealer) Courtesy of Cleveland.com.

Fast forward eight years, and Dellapina runs Specs4Us, which stands for “Superior Precision Eyewear for Children who are Special.” The company has 14 different styles in sizes from infant through adult, and has sold glasses in 28 countries so far. Dellapina even won a Toyota Mother of Invention Award in December, which came with a $50,000 grant to further expand her business.

Group photo of people wearing glasses with the "Specs4Us" logo.
Promo image courtesy of Maria Dellapina.

Erin travels with Dellapina to conferences, models in promotional images for Specs4Us and even has a Specs4Us frame line named after her, but the bottom line is she has glasses that fit.

A pair of Erin's World glasses, by Specs4us, designed by Maria Dellapina
A pair of Erin’s World glasses, by Specs4us, designed by Maria Dellapina (Chuck Crow/The Plain Dealer). Courtesy of Cleveland.com.

“She loves wearing her glasses,” Dellapina told The Mighty. “They’re the first thing she puts on in the morning and the last thing she takes off at night.”

Erin Farragger modelling her glasses.
Erin Farragger modelling her glasses, courtesy of Maria Dellapina.

Besides helping her daughter, Dellapina has found a reward in the feedback she gets daily from satisfied customers.

A young model named with Down syndrome named Guilianne. She's wearing glasses.
A young model named Guilianne wearing Specs4Us, courtesy of Maria Dellapina.

“I get up every morning knowing I will get an email or Facebook post of a child in the glasses with comments on how much it’s changed their lives, and it puts a big smile on my face” Dellapina told The Mighty. “You can’t have a better job or one more rewarding than doing something to help people all around the world.”

Maria Dellapina in the offices at Specs4us, in Burton, Ohio.
Maria Dellapina in the offices at Specs4us, in Burton, Ohio (Chuck Crow/The Plain Dealer). Courtesy of Cleveland.com.

For more information on Specs4Us, visit their webpage or 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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Clip From ‘Born This Way’ Finale Proves This Is the Must-Watch Show of the Year

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Tuesday night, the season finale of “Born This Way” airs on A&E, and judging from the emotional clip below, it’s another must-watch episode.

The six-part docu-series, which premiered in December and has already been picked up for a second season, follows seven people with Down syndrome as they pursue career goals and romantic relationships, form friendships, overcome obstacles and make their way in the world.

In the finale clip below, a young woman sits down to have an honest talk with her mother about the day they received her Down syndrome diagnosis. The conversation that follows is powerful.

“I thought it was going to be so hard and so difficult,” her mother says. “It was not as hard, but I didn’t know, and when you don’t know, you are scared.”

Born This Way | Finale Sneak PeekIt’s all about their abilities, not their disabilities. Watch the season finale of Born This Way on A&E TONIGHT at 10/9c.

Posted by A&E on Tuesday, January 12, 2016


The “Born This Way” season one finale airs on A&E on Tuesday 10/9c. You can watch full episodes from this season here.

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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Woman With Down Syndrome Hopes Her Taylor Swift Dance Will Help Others Get Fit

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Meghan Smith, 28, has been working hard over the last six months to get in shape. After starting Weight Watchers last spring and stepping up her dance workouts, the Fresno, California, native, who has Down syndrome, has lost 27 pounds.

Smith was featured on local news station KFSN this week when a video of her dancing to Taylor Swift’s “Shake It Off” made the rounds on the Internet. Smith’s brother Zach had reached out to KFSN to share his sister’s story, and with his sister’s permission, he sent them the video of one of her dance routines.

Smith says she wants to inspire others in the Down syndrome community to work on their fitness, and her family says they’re beyond proud of the progress she’s made, both physically and mentally.

Along with shaking it off on a regular basis, Smith now eats lots of vegetables and chooses chicken over fried foods. She told The Mighty she’s enjoyed the attention her story has garnered so far.

“I feel great,” she said. “I love being a star.”

She now wants to encourage her other friends to look into Weight Watchers to “learn how much to eat, to exercise more and make new friends.”

Meghan Smith smiles while wearing a dress and high heels

According to the National Down Syndrome Society, adults with Down syndrome are more likely to be obese than those without the condition. It’s often the result of untreated hypothyroidism, a condition in which the thyroid gland doesn’t produce enough thyroid hormone.

International Down Syndrome Coalition’s Board Chairman Beth Sullivan explained to The Mighty why it’s so important for people with Down syndrome to stay active and eat healthy. In addition to hypothyroidism, Sullivan said other factors contributing to obesity include the tendency to be sedentary, fewer opportunities for sports with peers and teams, and slower metabolisms.

“Good nutrition, healthy eating habits and staying physically active are frequently more successful when the entire family is involved,” Sullivan noted, adding that “there is evidence that a healthy diet can help dramatically reduce the risk of cognitive impairment and Alzheimer’s disease.”

Zach Smith, a special education teacher in Fresno county, says growing up with Meghan (and two other younger siblings with Down syndrome) was one of the biggest reasons he pursued that career path.

Megan Smith poses with her younger sister

“She always has had a clear sense of what she wanted in life, she just needed help with getting society to open it’s ceiling on what it would allow,” he said. “From being a key member of local action clubs for folks with support needs, to moving out into her own place here at the beginning of February, to her weight lost, she is really blowing the doors off of what even we, her family, thought was possible for her. I think at this point we are only scratching the surface of what individuals with support needs can accomplish, and how they themselves have skills we as a society need in order to move forward.”

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