In the short time since we launched Down Syndrome Nation, we have been overwhelmed with love and support.
Over 31,000 people have seen Juliette’s cover girl photo on Facebook, next to April Vernon’s wonderful poem about inclusiveness. We have been blessed to have several of you join us as guest bloggers, sharing your stories and the wisdom you have learned along the way. And with the help of our social media expert friends, DSN now has outposts on Instagram, Twitter, Facebook and Pinterest.
There is still so much to do to get our resource library populated and organized so it’s easy for you to find what you need. The more we engage with the Down syndrome community, the more content, wisdom and personal stories we discover that we can’t wait to share.
Amber Dent writes the “Baby Lemonade Blog“, where we get to meet and fall in love with her daughter Kara. Her most recent post: “I Was Not Given A Special Child Because I Am Any Stronger Than You“, was selected for inclusion in the March issue of Blue Umbrella Collective, a digital magazine for families of kids with special needs.
I look over at my beautiful girl and I silently thank her for the strength she has given me. I realize that this strength has slowly built up since the moment we got our prenatal diagnosis. Built up like an athlete with a barbell.
I became stronger with each piece of unexpected information, each surprise a weight all its own. I grew because I was able to lift the bar higher every time. Nowadays, I am strengthened with each shift in focus, different need that surfaces, or necessary medication. Each is a tiny weight added onto my barbell.
We’re big fans of The Mighty at DSN and it warmed my heart to read Paul Daugherty‘s exquisite letter to his daughter... on her wedding day. I imagine my own father thinking many of the same things on the day I married Brandon. In the end, we all have differences, but we share many, many other things in common.
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….
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.
If you are new to the community, you may still be navigating a lot of fear and uncertainty. That’s normal. Parenting at it’s core is often a roll of the dice. We do the best we can and keep our fingers crossed that things work out.
What we hope the DSN Community will give you is the sense that you’re not in this alone. Our extended family has surprised and delighted us again and again, touching our hearts and expanding our minds. Our goal is to pay it forward in the same way for you.
Thank you for being part of that family. If you are a first time visitor, welcome! If you are returning for sustenance, dive in. And let me know how we can make our outreach more effective.
We’re all in this together!
Our guest Blogger this week is Stefanie Settlemire. She’s mom to the amazing Liam and 4 other fantastic kids. She kindly shared this essay she wrote for Down Syndrome Awareness Day. Read her blog at Our Five Ring Circus and follow her on Twitter, Facebook, Instagram and Pinterest.
My personal journey with Down syndrome started 4 1/2 years ago with the birth of our sweet son, Liam. His unexpected post-birth diagnosis was a huge shock, but we quickly adjusted to life with Down syndrome. One of the most surprising things, however, was the fact that there were still so many misconceptions about Down syndrome. The world is filled with false facts, outdated information, and a whole lot of judgement!
1 in 5 U.S. adults is living with a type of disability. Although we are making great strides in becoming a more inclusive world for people with ALL abilities, there is still so much work to be done. In order to bring awareness, we must continuously educate and advocate!
I will be the first person to admit that I didn’t really understand Down syndrome until it was handed to me in the form of an impossibly tiny human who was rocking an extra chromosome! I quickly learned that everything that I thought I knew about Down syndrome was wrong. After years of research, and most importantly, experience, I consider myself well schooled. I now work tirelessly to educate others about what Down syndrome really is, in hopes that I will help make this world a better, more accepting place for my son and his peers!
21 Things YOU May Not Know About Down syndrome
Down syndrome is the most common chromosomal condition.
1 in every 700 babies in the United States is born with Down syndrome. That’s approximately 6,000 babies each year, which makes it the most common chromosomal condition!
It’s so important to read accurate information and facts about Down syndrome!
Babies with Down syndrome can be born to mothers of every age.
Although the chance of having a baby with Down syndrome increases with age, more babies with Down syndrome are born to mothers UNDER the age of 35! (I was one of them!) Any woman of child-bearing age can give birth to a child with Down syndrome, including teenagers and first time moms!
Down syndrome is not caused by the parents.
So many people still mistakenly put the blame on the parents when a baby is born with Down syndrome. They falsely believe that the mother or father did something to cause it. That is not the case! In almost every instance, Down syndrome occurs by chance! It’s like rolling the dice!
Down syndrome is NOT a disease.
Down syndrome is not a disease. It is a genetic condition that starts at conception. It is not contagious, it can not be treated, and it will never go away.
Babies with Down syndrome are born into families of every race and economic level.
Nobody is exempt from having a child with Down syndrome. Babies with Down syndrome are born into families of every race, religion, and economic level.
Down syndrome CAN go undetected during pregnancy.
Although prenatal screening is common these days, these blood tests only estimate the chance of having a baby with Down syndrome, and the baby can appear to be typically developing on ultrasounds. The only way to get a 100% accurate prenatal test result is through amniocentesis and CVS, and those tests aren’t given unless there are other risk factors, including a high probability. (My chance of having a baby with Down syndrome was 1 in 891, and his measurements were completely typical during ultrasounds.)
The life expectancy of a person who has Down syndrome is 60+.
Many people still believe that people who have Down syndrome die young. In 1983, the average life expectancy for a person who had Down syndrome was 25, and today, it’s 60+! Thanks to quality healthcare and routine testing, people who have Ds are living much longer lives!
“Mental retardation” is no longer the appropriate medical term.
Intellectual Disability and Cognitive Disability have replaced the now offensive “mental retardation” term. People in the medical profession rarely use this term anymore. Using the word “retarded” is very hurtful and offensive, because it implies that people who have disabilities are not good enough.
People who have Down syndrome prefer people first language.
People who have Down syndrome are PEOPLE FIRST. They are not a “Down syndrome child” and they are not “Down’s.” They have names. And they have Down syndrome. They do not suffer from Down syndrome. Try “the Baby/Boy/Girl/Man/Woman Who Has Down syndrome” instead.
What should you say? Learn more about People First Language!
People with Down syndrome can lead healthy lives!
Many people assume that people who have Down syndrome are very unhealthy, but that’s not true. Every human being is unique, including those who have Ds. Some people have health conditions, and some do not. The same goes for people who have Down syndrome. Although there are some health conditions they are more likely to experience, some people who have Down syndrome never experience a single issue! Quality healthcare, a healthy diet and exercise plan, and routine testing is the key to good health for people of ALL abilities!
Here are some healthy living tips for people of all abilities.
A person with Down syndrome can have every physical trait of Down syndrome or none at all!
A sandal gap between the toes, a palmar crease on the hands, an upward slant to the eyes, small size, a wide and flat nasal bridge, small ears, a short neck, and low muscle tone are common physical features of Down syndrome. But every person who has Down syndrome is unique, and may have all of the physical traits or none at all!
People who have Down syndrome attend school, go to college, and work with their typical peers!
Inclusion is the norm these days, and that’s how it should be! Thanks to inclusion, typically developing kids are learning acceptance at an early age, and people who have Down syndrome are THRIVING. Inclusion is what will change the world, and it’s so important not to limit people who have Down syndrome. They CAN and they are ABLE if you just give them a chance.
Find out more about Disability Inclusion in the workforce.
People who have Down syndrome can live alone and have relationships.
It is a false assumption that people who have Down syndrome will always be a child. Once they reach adulthood, they should be treated as such. While some people may not ever be able to live on their own, or may require support, there are just as many people who can – and do – live independently and pursue relationships with others. And, yes, people who have Down syndrome can get married!
Read all about Mark, who works, lives alone, and is active in his community!
People who have Down syndrome participate in sports and activities.
People who have Down syndrome have hobbies just like any other. Just as it is with education, inclusion is becoming increasingly popular in sports and activities, and people with Ds are competing and participating with their typical peers.
People who have Down syndrome vote, make decisions, and contribute to society.
Contrary to popular belief, many adults with Down syndrome are contributing members of our society. They have opinions, they make their own decisions, they vote, they work, and they volunteer!
Therapy, a quality education and a good support system are key to success.
There are so many more resources available today for people who have Down syndrome than even a decade ago. People who have Down syndrome are very capable, but they have to work harder than their typical peers. Therapy, which begins shortly after birth, a quality inclusive education, and a great support system are key to their success.
People with Down syndrome typically have only a mild to moderate cognitive delay.
A common belief is that people who have Down syndrome have a severe cognitive delay. Although all people who have Ds have a cognitive delay, the reality is that it’s usually only a mild to moderate delay.
People who have Down syndrome experience every emotion.
I can’t tell you how many times we have been told that people who have Down syndrome are ALWAYS happy! Although that extra chromosome seems to contribute to extra joy, people who have Ds experience every single emotion. They feel sadness, they feel anger, they worry, they get excited about things, and they absolutely realize when they’ve been hurt by others.
People who have Down syndrome can communicate.
Although the level of communication varies from person to person, people who have Down syndrome can communicate. Actually, thanks to the regular use of sign language and relying on nonverbal communication, they just might be able to communicate in more ways than their typical peers! (I HIGHLY recommend you look up Karen Gaffney!)
People who have Down syndrome love their lives, they love who they are, and their families and friends love them very much!
Many people falsely assume people who have Down syndrome are suffering. That is FAR from the truth! People who have Down syndrome are happy with their lives, they are proud of who they are, they love their family and friends, and they accept others just as they are. They are LOVED very much in return, by their families, friends, and support system.
People who have Down syndrome are HUMAN BEINGS.
This shouldn’t have to be said, but too many people look at the extra chromosome and just that extra chromosome. They allow that extra chromosome to define a human being. And sadly, we still live in a world where parents who have a child with Down syndrome still have to defend their child’s right to even exist. That extra chromosome often takes the spotlight, and the world forgets to see the HUMAN BEING first. Look closer, world. Because when you judge unfairly, you are missing out on something very special!
This is our 5th year celebrating World Down Syndrome Day in honor of our sweet Liam! When Liam was diagnosed with Down syndrome, we expected our lives to change drastically. At first, all we could see was that extra chromosome, but before long, days would go by and we would forget he even had Ds. Our lives changed, but not in the ways we expected.
What we learned is that Down syndrome really is quite beautiful, and our son was perfect exactly as he was. The most surprising thing about Down syndrome is the fact that our lives are actually quite typical, and Liam really is more alike than different! Contrary to popular belief, Down syndrome is nothing to fear. It is simply one tiny extra chromosome. Today, we celebrate the beauty of Down syndrome, and show the world that we ALL belong. We ask you to look past that one extra chromosome, and focus on the other 46 that are JUST like you!
We all know “the Stare”. As a parent of a child with Down syndrome “the Stare” is something you anticipate well before it happens. A few months back my mother-in-law asked if it bothered me when people stared at Juliette. I paused for a moment, then gently replied, “No”.
Remember I had already thought about this well before it happened. I had decided that the most impactful and meaningful way for others to understand Juliette and her buddies was to show them her joy, kindness and love.
You see Juliette is a social butterfly (she comes by it honestly) and no one is off limits. If you see us in the grocery store or taking a stroll in the park she will get your attention. Her stare, her wave, her “hi” is deliberate and purposeful. And then once you see her smile and hear her giggle she has really captured your heart.
I willingly introduce her by name to people we meet in passing or who she has requested a high-five from. I know they are curious because I was once curious too. Before Juliette I had limited experience interacting with people who had differences. I was that person who tried not to stare, did not always know how to respond or what to say. I never wanted to offend or make someone feel uncomfortable. If I knew back then what I know now I would have not stared, but instead said hello.
So if you stare do it with good intentions and witness the joy, kindness and love that you have missed. If you have questions, just ask in a respectful way. If you have children of your own teach them to be kind to people with Down syndrome and other differences by embracing their uniqueness. After all, we are all just people who want to be accepted, loved and included.
We always knew we would love our granddaughter “No Matter What”. We never realized how powerful those words could truly be.
“I love you no matter what.” It’s something we always say to one another in our family, a tradition and a truth. When our granddaughter was born with Down syndrome, we wondered if that might test our maxim. We quickly discovered it only reinforced it.
We remember Juliette’s birthday in much the same way that we remember her older brother’s arrival. Anticipation, excitement and fear. We’re grandparents. We’ve been through the cycle. We know that you can do everything right and things can go wrong, that kids don’t come with a manual, that they don’t always progress “on schedule”, and that all you can really do as a parent is model the behavior you expect and love them.
So the day that Juliette arrived, all of these things were on our mind. Both Brandon and Stephanie work full time. Colleen was able to stay home with our kids. So we worried about how long days end in exhaustion, just about the time your kids need you most. We worried about the world we live in. It’s vastly different from what it was like when we grew up and our parents threw us outside on a Saturday morning saying, “Be home when the streetlights come on.”
But we also knew that things work out. Pain is inevitable in parenting. So is screwing your kids up. We told our two that we were doing the best we knew how, but we would make mistakes. They could blame us for those errors until they were 18. From then on, chasing purpose and happiness was up to them. We were lucky. They both turned out OK.
We were in the room when they brought Juliette in for her debut. The moment we saw her, we knew.
Colleen’s youngest brother was born with Down Syndrome. His constitution included many of the frightening health challenges these children can have. We lost him before he turned 18.
So we were nervous. When they quickly took Jules away to confirm what the docs and nurses already suspected, we did the only thing we knew how to do for her parents. We told them we were there to help in any way they might ask for it. We told them that there was a huge spectrum on the Down Syndrome scale and it would take time to know where Juliette might land. Having fought cancer together three times, we had learned to compartmentalize our fears until there was real reason to worry. And we assured them that:
There are moments of joy in the midst of every challenge.
The fear is the hardest part. You naturally vector to worst case scenarios. It’s easy to let something scary blot out the sunshine in the now, to miss out of the joys of life amid its uncertainties.
How could we teach these things to our children in the days and months ahead?
As Juliette’s diagnosis was confirmed, there was good news. She seemed physically healthy. The really bad things, like heart issues, didn’t seem to be part of her package. And the state of the art in care and therapy has changed dramatically since Colleen’s family had to navigate her brother’s life. Something called “Early Intervention” begins almost immediately, to strengthen muscles, monitor her development and adjust. The state funds much of it during the first three years of life. And the organizations that are dedicated to serving the Down Syndrome community are numerous and capable.
We heard many things from well meaning friends. It’s hard to know what to say. We understood that the advice we received came from a place of love, even if it was sometimes misguided or uninformed.
There were two things that did resonate with us. Ironically they came from one of Colleen’s fellow cancer survivors, a warrior who has fought the monster almost continuously since her diagnosis.
Have the same expectations for your child, but realize that you will be taking “the scenic route” to get there.
“The Scenic Route.”
That brought back memories of our dads taking the family on the back roads instead of the interstate, “because that’s much more interesting.” We discovered places we might never have known about on the scenic route. There were times we got hopelessly lost and worried about running out of gas. And for a young kid with a short attention span, the longer trip sometimes drove me nuts.
But I remember those vacations much more vividly than the monotony of an endless ribbon of concrete.
We quickly learned that much about life with Juliette was exactly like life with her brother. Eat, sleep and change diapers. That drill was the same. She cried when she was wet or hungry. And she seemed to dish out winning smiles with a frequency that melted our hearts.
We remember her first steps, her first words, the day she could feed herself with a spoon. All of these things are universal. In retrospect, the fact that she did them on her own schedule is something we’ve nearly forgotten. There are many times that I only realize she’s “different” from her age mates when I’m with her at her preschool. They talk in sentences. She still prefers sign language and mono syllables.
But inside that brain, I’m convinced is a genius.
Yeah, I know that’s grandpa talk, but hear me out. She knows exactly what she wants and how to get it. Her memory is sharp as a tack. When she wants to do something she does it, often over and over until it becomes a habit. She’s careful, but in many ways, fearless. She’s as open to being taught as any almost-three-year-old. She gets bored, angry and distracted. But she can focus, too and will go the extra mile for praise.
She’s also a jokester who enjoys stealing your glasses, playing catch and mimicking her mother. She loves to sing and dance and can hold her own with her brother in a wrestling match. She has a great capacity for compassion and is ready to comfort you if you are hurting. She has temper tantrums but is also capable of great patience. She gets colds and temps frequently. Our memory of that part of being a kid is one long procession of earaches, sore throats and colds until they ate enough dirt or built up enough immunity to keep those things at bay. Even when she’s not feeling 100%, Jules is still often eager to play, as if she is determined not to let a little inconvenience get in the way of making most of the day.
In short, she is a lot like our kids were when they were young. She’s just doing things her way and on her own schedule.
We’re a long way from knowing what her long term prospects might be. We hope for the same acceptance, support and opportunity for our granddaughter that all families want for their offspring. The world can be judgemental and some are taught to discount and dismiss people who are not like they are. Things can still go wrong. We’ll cross that bridge when we come to it.
Juliette Pamela is teaching us to live one day at a time, deliberately, curiously and joyfully.
A friend confided in me that he didn’t know how he could be an effective parent to a child with a “disability”. We admit that we’ve had it easy compared to some. But even those who’s road has been a lot rougher report the same thing we feel. This person is our treasured gift from the universe, a spirit on loan that has chosen us to be her sibling, parents and grandparents.
Yes, she comes with unique challenges. But she has become an inseparable part of our family, painting her own beautiful pictures on the tapestry of life. We’ve forgotten what life was like before she came to us.
And we don’t know what we would do without her.
On Wednesdays, we share some of the most inspiring things we’ve learned so far this week. Enjoy!
Sign Language expands the world for children with Down Syndrome. We love how Kaimhill, a Primary School in the Garthdee area of Aberdeen, makes it part of the language of love.
Check out these podcasts from our friends at Down Syndrome UK. Helpful insights from across the pond.
MYTH: People with Down syndrome do not live very long.
FACT: Today, people with Down syndrome can look forward to a long life given the right medical attention.
Learn more here:
Bravo to The Massachusetts Down Syndrome Congress’ Boston Marathon runners promoting Down Syndrome awareness and Inclusion. Super proud of all of you.
Tools for Down Syndrome families – Have you had experience with EReading Pro? Share your feedback with us.
A helpful terminology guide for our Down Syndrome family and friends.
This competitive cheerleading team is made up of athletes with disabilities!
A powerful documentary, Kelly’s Hollywood, is included with Amazon Prime in the US. An inspiring story of a girl with Down Syndrome and a dream.
“Their genuine warmth is their actual superpower!” A beautiful video from Fidelis Creative made for the Down Syndrome Association of Brazos Valley, TX.
“One of my favorite things about Lindie having Down Syndrome is that I get my baby longer. Each developmental stage & milestone lingers & most of the time I love that.” ~Aimee Swift, from her blog.
An inspiring story via Ontario’s Kimberly Murphy. (Inspiring is a word you’ll see often whenever we talk about #DownSyndrome.)
Down Syndrome strong. When compassionate stars like The Rock help us get the word out, our audience of awareness grows exponentially. Thank you, Dwayne!
How Doctors introduce us to our angels with Down Syndrome is crucial to planting seeds of love and courage that grow into strong cables of courage. Many could learn how to do it better. Can’t wait to see this film.
Inclusion begins with me. A powerful Instagram message from “Embracing the Extra“:
I realized something today: Inclusion begins with me.
Let me explain what I mean by that— It’s easy for me to just hang out with family or church friends or coworkers who already know Andy and our situation.
But inclusion also looks like me bringing my child somewhere I know typically developing children will be- like library story time. Places where I know other moms will be talking about what their child is doing and how old they were when they learned to do things and actively comparing their child to mine. Places where I know people I’ve never met before will see my child is different and want to ask questions.
I have to put myself and my kid out there and give other people a chance to be inclusive.
And more often than not, I’ll be pleasantly surprised.
Maria Stacy is the proud mother of two children with Down Syndrome, Nancy and Joey. She shares the powerful story of how she learned that she would become a Down Syndrome parent. Follow her on the Hormones and Chromosomes Facebook Page.
I know it’s early in the morning and you have just come on shift. It’s a Monday too. The start of another busy week in Paediatrics.
And a midwife has come and found you. Telling you, you need to see the baby boy in bay 1.
And you are dreading examining him. Because if the midwife is pretty sure she’s seen those signs then you know she’s probably right. But it will be left to you to confirm it and deliver the news to a mother with no idea.
Then you walk in the room and see her and your heart sinks a little lower. She’s got that new mother glow and happiness about her and you know you are about to break her world.
But don’t be scared.
Don’t be scared of all those little signs that you are hoping you won’t see, but that are there.
See those eyes? The ones shaped like large almonds with the epicanthal folds? Well soon they will open wide. They will have brushfield spots (another common trait) that will make them shine like they have had diamonds placed in them.
Those eyes will see the world and look deep into the soul of those around him and steal their hearts.
See that nose with it’s flat nasal bridge? That will be the cutest nose his sister has ever seen.
See those feet? The ones with the sandal toe gap? Those feet will soon walk and he will follow his daddy everywhere. He will walk 130 miles around Anglesey with his daddy before he reaches four. They will kick a ball and they will run.
See that floppiness? That’s caused by low muscle tone. That will become stronger. It will leave those around him in awe of how hard he works to get stronger. It will also leave him able to give the best cuddles.
And those hands? Those hands that you are dreading unfolding to see the single line crease. Those hands will build blocks and hold books. Those hands will grasp his mother’s hand every night before he sleeps. And she will dread the day he gets too old and stops.
So doctor don’t be scared. Those things you see aren’t there to be feared. They are the very things that make him beautiful and make him powerful. They are the things his family will adore.
For yes you are about to change this mother’s world, but you will not break it. You are about to tell her that she’s just welcomed something wonderful into her life.
Don’t tell her you’re sorry. Because you shouldn’t be.
Tell her congratulations. Tell her that the road ahead may not always be easy. But tell her it will always, always be worth it.
From The Mum of the baby boy in bay 1