Kids With and Without Down Syndrome Answer the Same Questions

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What do you want to be when you grow up? What’s your favorite food? These are questions every person has answers to.

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To celebrate World Down Syndrome Day, siblings Lauren and Paul Costabile produced the short video below, called “More Alike Than Different.” In it, they asked kids with Down syndrome, as well as typically developing kids, some simple questions and recorded their answers.

The Costabiles, who made the video in collaboration with a number of Down syndrome organizations, are also the producers and creators of “Bailey’s World,” a TV show in development featuring a main character with Down Syndrome.

The message of the video above is clear — we all deserve to be loved, included and accepted in our society.

Check out the hashtag #MoreAlikeThanDifferent for more information.

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Why I No Longer Engage the People Who Think My Son’s Life Doesn’t Have Value

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In the past three years, I’ve learned many things about myself, my family and the world we live in.

I’ve learned there’s nothing more important to me than the health and happiness of my children.

I’ve learned what it feels like to hand your 7-week-old over to a surgeon and spend the next six hours begging any God listening to bring him back to you.

I’ve learned there’s beauty in celebrating every single milestone and every new skill acquired.

I’ve learned that my family is truly the sum of its parts.

I’ve learned there’s an ugliness in the world we live in when it comes to people’s perception and acceptance of people with disabilities.

I’ve learned to ignore this ugliness (Well, I’m learning to).

We found out our fourth (and final) child would be born with Down syndrome during my 20th week of pregnancy. We also learned he would be born with several congenital heart defects that would require open heart surgery at a young age.

We learned we’d be adding a son to our family full of daughters. Our initial reaction to this news was marred with fear and uncertainty. We were unsure of what type of future our son would have and how it would affect our other children.

In retrospect, I realize I was mostly afraid of never having the opportunity to hold our little guy and to welcome him into the world. I wanted the chance to help him find his place in the world we live in. I was worried about how the world would treat him.

We’ve been welcomed with open arms into the Down syndrome community, a community as vast in its uniqueness as any other. I have friends, virtual and otherwise, from all around the world. We all share the same mission and the same voice. We strive for acceptance of our loved ones. We may differ in the route we choose to create to ensure this acceptance, but that one word — acceptance — is really at the center of what we spend our lives working towards.

Personally, I want my son and everyone with a disability to be accepted based solely on who they are. Unfortunately, I find myself and others constantly saying things like, “People with Down syndrome graduate from high school, attend college, live independently, get married, drive cars, etc.” in response to people who comment on article after article that my son would be better off dead (this has actually been said) because he will never contribute to society or will suffer and be a burden to his sisters.

People say it’s “immoral” to carry children with Down syndrome to term if given a prenatal diagnosis. I’ve realized there’s no convincing those people my son’s life has value. They don’t actually see him or people with disabilities; they only see the disability. They also only see disability through their own eyes, how they think they would feel if they had a child with a disability or if they had a disability themselves. So, I’m going to stop trying.

I will, however, continue to talk about my son and the joy he brings to our family and those around us. Not because he has Down syndrome, but because he’s Carter. I don’t have to prove anything to anyone and neither does he.

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What Every Parent Who Has a Baby With Down Syndrome Should Know

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I almost always think of the new mom… the pregnant mom… the twosome that suddenly turned into a threesome and then got a big surprise…

Down syndrome snuck into the room.

“Go away, right now.,” they want to scream. “We want our perfect baby.” “We want a trouble-free childhood.”

Milestones met easily. No difficult conversations. No messy situations.

But Down syndrome is stubborn… and it will not be leaving the party.

Those new parents will hear all of the difficulties up front. A doctor or geneticist will think they are being kind and they will lay out as if it were the assortment of utensils used in a famous “Downton Abbey” dinner, the numerous potential difficulties of life with Down syndrome.

I often wonder how parents of typical infants would react if they, too, were seated and forced to listen to all of the difficulties that their children may face. What would they say? Their faces squinty-eyed, searching their tiny treasure for any sign that the potential things listed might be present right this very minute or showing up at any moment.

I get it.

I was you once, searching for other families with three children and looking at them longingly. Why isn’t my family like that? Get this interloper out now.

On this day, I’d like to offer up some truth. I’ve been hanging around people with Down syndrome on a regular basis for fifteen years.

Down syndrome is not a rude guest.

Down syndrome provides you with something you may never have had before: glittering eyes.

roald dahl glittering eyes quote

Down syndrome is full of magic… so unlikely, so improbable, that people discount it and never notice.

If you are pals with Down syndrome, you see miracles. Full fledged miracles. Frequently.

You see the tenderness and joy that is so raw and so real that it takes your breath away.

You see the power of hope.

You witness just how powerful love really is. You see people dealing with adversity in a humble, stoic way. They just deal with it. Don’t belabor it. Courage in every way.

You learn how to live in this moment right now… not rehashing the past or planning the future. Right now. Turns out that’s what matters.

It just so happened that World Down Syndrome Day aligned with Patrick’s one and only basketball tournament with Special Olympics.

He got himself up and ready and filled up the water bottle. We listened to songs to pump ourselves up. We put our game faces on.

Only that’s not a thing in Special Olympics because when you walk out, your teammates are loose and ready and oh so happy to see you. Cheering for you, actually.

They might be wearing fox ears. They could be needing a new jersey. They might be talking to themselves… or have anger issues. But the rag tag group is a team and they are happy for the opportunity.

Watching Patrick play basketball, none of it is easy. The player whose vision prevents him from being able to dribble in any way. The player who likes to defend a little too enthusiastically. The player who has a sweet shot from only one tiny spot on the court… but when it gets up… when it has a chance to fly, man, it’s nothing but net.

In these games, every point is hard won. Nothing comes easy. Even taking the ball inbound can be tricky. The scores are low — but the spirits are high.

Miraculously, Patrick’s team won their second round of games and they would be playing the
Gold Medal Game! We came home, gathered the troops and went back for the game.

The stands were full. The players were ready; nothing had changed. No stressful coaching talks. No pressure from the other players or the parents to perform. Just another game.

The teams were very evenly matched. There were miracle shots on both sides. There was joy and acceptance and fun — cheers from the crowd and high fives from friends. Double overtime. Down from behind. Patrick’s team recovers and impossibly shoots to win, with seconds left. It was a Gold Medal Moment.

I squished that moment in my heart. Tried to feel it and know its smoothness. I had my parents cheering, my children cheering, my husband cheering…

I wanted to transport any new parent and
like the Ghost of Christmas Future show you what you are in for…

Down syndrome is a glue. It’s sticky and attracts the most amazing people.

People like Patrick’s Special Olympics basketball coach who, on his first day of spring break as a junior high teacher of students with disabilities, is front and center organizing the groups and passing out jerseys.

People who have at their core a deep understanding of what matters. What’s real. What’s important.

That glitter glue attracts people who are: selfless; honest; trustworthy; dependable; loving; optimistic; encouraging; and problem-solvers. People who get stuff done.

Our family went to see the new Cinderella movie. It’s a beautiful escape with a wonderful message:

Have courage, be kind and find a little bit of magic.

Those words are my truth. That is the definition of Down syndrome: courage, kindness, magic.

New momma, you are in for some serious magic. But you must take your glittering eyes and really see. In the most unlikely of places, with the most unlikely of people,
you will be blessed.

Blessed by love, kindness, friendship and the clarity to see what counts.

I wish for you not just a Gold Medal World Down Syndrome Day; I wish for you a glittering, gold medal Down syndrome life.

This post originally appeared on Grace In The Ordinary.

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My Answer to the Question, ‘Will He Ever Get Married?’

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In our bedroom, our vows hang at the center. They are the first thing we see when we wake up and the last thing we see before shutting our eyes at night. I heard a rabbi say once that “Marriage is not the most important thing, it is the only important thing.” It’s a big statement, but I see what he means. The stronger our marriage is, the better our faith, our family and our lives. We are better together.

black and white wedding photo

When you have a child with Down syndrome, you get inducted into a club. People reach out to you, they calm you, they strengthen you, they get you.

When Anderson was about 2 weeks old, we got an email from another club member. She found out her son had Down syndrome after he was born. She talked about all of the fears she had and how her son is constantly proving most of those fears to be unfounded. She talked about the hope she has for his future. When you get these messages from other parents, it makes you feel all the feelings — hopeful, sad, joyful, and just downright emotional.

When we were done reading the email, Andy looked at me; he was barely able to speak. The tears ran down his face with such force that his throat started to close up, but he was able to choke out a sentence that I will never forget:

“I hope he meets a girl with Down syndrome. I want him to love someone the way I love you.”

The sentence both warmed and shattered my heart at the same time.

When we were in the diagnosis phase, I think it was this very topic that haunted me the most. Marriage was so important to me, to us… would he ever get to experience it for himself? Will he ever find someone to love and will that someone love him back?

As life expectancy increases for people with Down syndrome, so does the marriage rate. But it appears that when people with Down syndrome get married, it’s a newsworthy event. In other words, it’s still not commonplace. Where would Anderson fall, the married or unmarried side?

I want him to get married. But I realize that I want him to get married because marriage has brought me so much joy.  Marriage makes me a better person. But just because I have chosen to make it the center of my life, doesn’t mean that it has to be the center of Anderson’s life. And that would be okay. Our job as parents isn’t to make photocopy versions of ourselves. Our job is to instill our good values in our children, but also to teach them to be independent, to make their own decisions, to make their own lives.

So, to the rabbi, I kindly disagree. Marriage isn’t the only thing, love is. Maybe Anderson won’t love someone the way his Dad and I love each other, but he will love and he will be loved. He will love his sister, his grandparents, his cousins and maybe even a wife.

Married or unmarried, our son’s life will be full of love.

This post originally appeared on News Anchor to Homemaker.

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Our Daughter's Short Life Taught Us So Much About Joy

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Dear Down Syndrome,

You snuck into our lives quietly alongside several scary diagnoses our baby girl received. We knew nothing about you except that surgery could not “fix” you. For this reason, we feared you the most.

We began to research what you would mean for our daughter’s life and became even more frightened. The research said many things would be difficult for her and she may not even achieve many milestones like walking and talking. We feared our daughter would not be loved or accepted.

Down Syndrome, you caused us to grieve the child we had dreamed of having. She was meant to be perfect with brunette pigtails in a twirly dress dancing in a field of flowers. Her smile would be radiant and her laugh infectious. You, Down Syndrome, stole that dream from us.

We were angry for a little while, but not too long. Soon we learned to cherish things we could not have dreamed of that you brought as a gift. The first was her little feet and separated toes. Oh, how we loved to paint her little toenails! The second was her low muscle tone in those early days of a long NICU stay and how it made her little body snuggle into the crook of our arms like a newborn for a little longer than her twin’s did. Third came her tolerance for pain. It sounds strange to say this one, but she needed it to endure all of the surgeries that came with the other diagnoses.

Do you remember the radiant smile and infectious laugh we dreamed she would have? It was better than we had imagined. Pure love flowed from her in a way that made thousands of strangers fall in love with her.

Down Syndrome, soon you became our least-feared diagnosis as our sweet girl battled illnesses and infections brought on by the others. We began to embrace you and saw a new dream for our child that was so similar to the first. Only now, that dream was for her happiness, not ours.

We learned that hitting a milestone late or not at all did not steal her joy. So why should we allow it to steal ours? We watched as she smiled through the trials and loved through the pain. Soon, we learned to do the same. We discovered that happiness can be found in every moment, even the most painful ones. 

On February 18th, another of the diagnoses took our sweet girl home to Heaven. We miss her terribly.

We miss everything about her, including you, Down Syndrome. Thank you for the gifts we received through your presence in our daughter’s life.

You are no longer something that we fear and hope to help others embrace you as well.

This post originally appeared on WeWiggins.

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What I Realized When My Son With Down Syndrome Gave Me Dandelions

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Yesterday, my son, Kelly, came with a special gift for me. He’d carefully picked me a lovely bouquet… of dandelions.

ThinkstockPhotos-93169237

I have a bunch of kids, so this was not my first bouquet of dandelions, but it was my first bunch from Kelly. As I was putting the vase on my windowsill, it struck me how these particular flowers could actually be used as a metaphor for Kelly’s presence in our lives.

Kelly arrived after my third uneventful pregnancy and uncomplicated home-birth. When he was born, he did not make a sound. Not one sound.

He just gazed at me.

Even though I knew this was not “normal,”  it was absolutely amazing.

The midwife recorded his APGAR and then gently suggested we head to the hospital to get him checked out.  In retrospect, it’s obvious that she knew right away something was amiss but didn’t feel it was her place to make the diagnosis. Or maybe she just wanted to let us bask in the post-birth bliss for a while longer.

We decided to travel to a larger hospital more than an hour from our home to get Kelly checked out. Having all of those post-birth endorphins raging through my body, I didn’t for one minute think anything was wrong with my baby. When we were finally seen at the hospital, the doctors all exchanged knowing glances, but I was still oblivious. Halfway through his examination, Kelly had an apneic episode (he briefly stopped breathing) and was rushed from the room. They left us sitting alone and stunned. A few minutes later a group of doctors returned to the room and gave us Kelly’s diagnosis: Down syndrome.

I can only think of clichés to describe the moment: I was blindsided. The wind was knocked out of me. The bottom dropped out. They all fit. The doctors left my husband and me alone in a stark, strange hospital room where we wept and held each other, stunned and in disbelief.

Kelly had to be admitted to the hospital to be monitored for a possible heart condition. I felt like my world was falling apart. How could this be? Why us? We can’t have a handicapped child… can we?

And yet, he was my baby.

In a NICU filled with tiny, premature babies, jumbo Kelly (he was 8.5 pounds) lay there all pink and cute. Thankfully, he took to nursing right away, and the wonderful nurses made sure we got plenty of private time. I was in love.

When Kelly came home to his brothers, I took the oldest aside to explain about Kelly. I was a bit nervous about this. Luke was 6 at the time and already intense. I explained that Kelly might take a bit longer to crawl and walk than his younger brother had and that things would go at Kelly’s own special pace. Luke just looked at me, looked adoringly at Kelly and simply said, “OK, Mama.” He walked away and went on playing.

Those two words, “OK, Mama,”  taught me one of the biggest lessons of my life: We were still given a gift. It may not have been the gift that I was expecting, but it was still fabulously beautiful, and if I shifted my attitude away from the drama and into the awe; all would be well.

Kelly is now 14 years old. He delights us every day. Yes, he can be a challenge at times but not any more than his typically developing siblings.

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Kelly is our greatest teacher. He lives fully in the present every single day. He doesn’t lament the past or yearn for the future. He’s just focused on what is fun this very second. He does whatever strikes his fancy most of the time and doesn’t give two hoots about what people think of him. Wear my sister’s black patent leather high-heeled boots to the school craft fair? Why not, if I like them? Break into an impromptu dance in the middle of downtown when I hear some music I like? Why wouldn’t I?

This kid has it made.

Some people still feel pity for Kelly and our family because of his Down syndrome. These are the people who do not and will not get  it. A few months after Kelly’s birth, I visited a local health professional, and while he was taking my health history, I mentioned I had a son with Down syndrome. He sighed with a weight of sadness and said to me, “What a struggle.”

Now, when Kelly is skipping around singing or dancing to some music he loves, my husband and I just look at each other with a smile and say “Yes, what a terrible struggle.”

We should all envy Kelly. He’s truly free. My point is not that a “normal” life is dismal; I happen to live one full of joy (even with a mortgage). It’s just that Kelly’s alternative life looks pretty appealing, too. We get so stuck in thinking there’s only one way to live and anything other than that must be inferior.

Like a bouquet of dandelions.

Who says that cheery little flower is inferior to a rose or a daisy? Not Kelly. He just picks them and smells them and presents them proudly without caring one bit about the overall health of the perfect lawn. Then he will spend the rest of the day doing whatever strikes his fancy.

A version of this post first appeared on norarozell.com.

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