Pepper and Kolleen.

What People-First Language Can Miss About Down Syndrome

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As the mother of a daughter with Down syndrome, a comment made recently by a new father caught my ear. He insisted his son was “not a ‘Down’s baby’ but a baby with Down syndrome.” What’s more, he maintained, the term “Down’s baby” was incorrect and carried the connotation that his son was somehow less than “normal” people.

Right there with ya, buddy!

Or… at least I was when my daughter Kolleen was a baby. Long before blogs existed, I wrote in a journal my philosophy, that “Kolleen should not be treated as a Down syndrome child but as a child with Down syndrome.” Thirty years ago, it was important – critical – to me that the world see her first, and her Down syndrome second, rather than the other way around. I embraced that I would spend my life standing between her vulnerability and a challenging, potentially unkind world. I was ready.

But now, something about that father’s comment, that this distinction between saying “Down’s baby” and “a baby with Down syndrome” was the difference between right and wrong, bothered me. Wait – what? I had written almost the same words when Kolleen was a baby. Why wasn’t I feeling all “rah, rah” about his statement? Why did this idea no longer fit comfortably? Guilt began whispering hello from the periphery. Had I become complacent, abandoned my post? Had I let my daughter down?

I finally realized why the distinction no longer resonated with me. In fact, I had an epiphany, one of those glowing moments when a new idea springs, fully formed and comprehended, into your soul, and you feel downright wise.

Yes, I had been ready to be her champion, but I realized my starting premise was faulty. By saying, don’t consider her Down syndrome first, I was actually saying, don’t look at what’s wrong first, look at what’s right. Don’t look at what’s wrong. I was asking the world to look beyond what was automatically assumed a negative. Down syndrome was a check in the minus column. Even today, the preferred terminology of People-First Language states, “a disability descriptor is simply a medical diagnosis,” and we should “respectfully put the person before the disability.”

Ahh. There was the seed of my uneasiness, that attitude that Down syndrome is “simply a medical diagnosis” that only provides a foundation for the acceptance and advocacy of the person, but is not good enough to actually be a descriptor of the person.

When I was pregnant, I had hoped for a daughter. Got her! I had hoped her hair would be red. It wasn’t, but that was OK. I had hoped her eyes would be blue. They weren’t, but that was OK. What I didn’t hope for was a child with Down syndrome. But she had it, and like her brown hair and grey eyes, it was never going to change. And that was OK too.

Yet, I fell in step with considering Down syndrome as “other,” rather than an integral part of my child, as if the “true” Kolleen transcended her diagnosis. “Look at her, her true self, first,” we seemed to be saying. “Look past the part we don’t like but have accepted.” By advancing the idea that calling Kolleen a “Down’s baby” was inappropriate, I was silently complicit in the unspoken but prevailing belief that Down syndrome rendered her less desirable, less satisfactory. Unwittingly, I was supporting the status quo, instead of advocating for my child. That was my mistake.

I was also asking the world to see Kolleen this way before even I could see her, before I knew who she was. At the time, I only knew a lot about her and her typical baby needs; her not-so-typical baby needs; her anticipated struggles; and, most frightening, her medical concerns. That list was long.

Soon after recovering from her first open-heart surgery, Kolleen’s personality began to emerge, as little baby personalities do. Overall, she was a sweet baby when life was easy and going her way, like when we cuddled, or when we went for evening walks, or even when I sang Broadway show tunes to her while we rocked. She was a loud, cranky baby when forced to endure physical therapy to ensure various systems would develop properly. She was a curious baby when blowing bubbles or licking lollipops for speech therapy, and playing with new, intriguing toys for occupational therapy.

The thing I remember most of all was, she a wickedly funny baby. If something she did made me laugh once, she would repeat the behavior again and again, until I’d laughed so hard, I had tears running down my face. Then we’d move on to a new activity, and about the time I was thinking of something else, she’d give me the side-eye and do it again. One. More. Time. Just to make me laugh. She was the funniest non-speaking comedian since Harpo Marx.

Thirty-one years later, Kolleen’s now a woman. A brown-haired woman. A grey-eyed woman. A sweet woman when life is going her way, a cranky woman when forced to do something she doesn’t want to do, and a curious woman when intrigued by something new. And, oh yeah – a wickedly funny woman who still makes me laugh a lot. You know what else she is? A Down’s woman. Why should we consider that last description incorrect? It’s as correct as all the others, but more importantly, it’s not inherently bad. Let’s stop treating it as though it were. Let’s stop treating the descriptor as though it were chaff to be separated from the more desirable wheat.

Down syndrome happens, like brown hair and grey eyes and short stature and tiny feet and whatever else your child may be born with. It definitely comes with challenges, but let me tell you, so do those “typical” children. It also comes with joys and profound life lessons not found elsewhere. There’s ample reason to consider it a check in the plus column. I understand that now. Kolleen has been an excellent teacher.

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The Bedtime Story I Rewrote for My Son With Down Syndrome

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Happy birthday, Kaleb! Every birthday a person experiences is special, but I’m not sure one has held so much significance for me as your first birthday. In some ways, I feel that it’s my birthday, too, since it signifies the beginning of my own transformation.

I think back to this past year filled with all the tears, heartaches, prayers, cuddles, hope and love. I am reminded of our bedtime story, “I Love You, Stinky Face” by Lisa McCourt. I read it to you each night while you sit on my lap nestled against me. Yes, it’s the one that you try to hold and turn the pages while I’m still reading. At least once or twice during the story, you will turn your little head to watch me with your big beautiful eyes as I read.

I love that book. It’s a very cute story. The other night while rocking you and giving you a few extra cuddles, I read the back of the book. The back of the book speaks to the unconditional love of a mother. In the book, the mother’s love is tested. This year has tested us, but I hope you have always felt reassured of my love for you.

It also mentions that the illustrations with their calm colors and pictures can make the scary stuff seem not so scary. I can vouch that you made what would seem scary and downright impossible seem not so scary. So while I read, I must admit a revised version comes to mind — our own special version of the book.

“I love you, my wonderful child,” said Momma as she tucked me in. But I had a question.

But Momma, what if I were born a very tiny preemie? Would you still love me then?

“If you were a very tiny preemie, I would sit by your side so you wouldn’t be alone. I would begin to learn the language of the NICU, so I could better understand your needs and I would say, ‘I love you, my very tiny preemie.’”

But Momma, but Momma, what if I were connected to monitors and had to live in the NICU instead of going home with you and Daddy?

“My heart would be very sad and look forward to bringing you home, but I would come spend each day with you in your temporary home. And if you came with monitors, I wouldn’t mind. I would learn to handle all of those monitors as I pick you up and hold you tight and whisper, ‘I love you, my precious NICU baby.’”

But Momma, but Momma, what if I came with a diagnosis of Down syndrome and an extra chromosome you hadn’t expected. And that extra chromosome meant I would learn things in my own time and way?

“That extra chromosome might catch us off guard, but we would work to figure out this journey together. As you show us life from a different perspective, I would work to be the mother you need and make sure you have every possible opportunity. That chromosome would only confirm what I already knew — that you’re simply extra special and uniquely you. And I would say, ‘I love you, my perfect child with Down syndrome.’”

But Momma, what if I came with oxygen and monitors and even ate my food through a tube in my stomach?

“Then I would give your breast milk through a tube if that is what you needed. And I would learn to handle your monitors and oxygen needs, since you’ll need them to grow big and strong. And I would lay you in your crib and say, ‘I love you, my sweet baby, accessories and all.’”

But Momma, but Momma, what if I had to have heart surgery that made you feel as if your heart was the one that would break?

“Then I would hold you tight until it was time to hand you over to your medical team. I would be worried sick, but I would let my heart break if that meant yours would be fixed. And afterwards I would say, ‘I love you, my little heart warrior.’”

But Momma, but Momma, what if my future was a scary unknown that sometimes makes you cry with worry?

“Then I would look right into your eyes and say, ‘I love you, my child.’ Because my child you are more than your medical file. You are my child, and every life is a big scary unknown. That is why we take it one day at a time and enjoy what we have today.”

Amanda Dickinson and her son, Kaleb

But Momma, what if my first year made your heart have cracks in it from breaking in ways you never thought possible?

“My dear, those cracks are not really cracks at all, but rather stretch marks from where my heart would grow in ways I never thought possible. Those stretch marks would be created from new-found love and respect for your daddy and brother, medical professionals, fellow parents and you. Sure, it would feel at times as if it were breaking, but I would gain a lot more than I originally perceived as lost. I would kiss your chubby cheeks and say, ‘I love you, my mighty miracle.’”

Today, I am so happy to celebrate your birthday and the first year of your life. You did it, Kaleb.

I love you, my wonderful child. Happy first birthday!

 Inspired by “I Love You, Stinky Face” by Lisa McCourt.

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Henny Beaumont's 'Hole In The Heart' Gives Honest Look at Having Her Baby With Down Syndrome

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When Henny Beaumont’s daughter Beth was born, Beaumont found it impossible to accept her daughter had Down syndrome.

“I thought my world was over,” Beaumont told The Mighty. “I remember thinking birthdays, Christmas and family holidays would all now be ruined by Beth’s presence; her Down syndrome would somehow contaminate it all.”

Beaumont now knows that isn’t true — but she wants to help new parents who are still trying to work out those guilt-inducing feelings.

So the London-based mom wrote and illustrated the book she wished she could have read when Beth was born. “I felt there was nothing out there that really described my own experience,” Beaumont said. “I think I’ve written the book I would have liked to read when Beth was little — something that described the difficulty I had loving Beth, without making me feel guilty.”

Illustration of Beaumont telling her kids about Beth

Beaumont’s graphic novel, “Hole In The Heart,” starts with Beaumont finding out, shortly after her daughter’s birth, that Beth has Down syndrome and a life-threatening hole in heart. Her illustrations highlight her own fears and insecurities as well as the hurtful and uneducated comments other parents, teachers, doctors and friends have made about Beth’s diagnosis. “I found it almost impossible to love her as a baby. With hindsight, I think it was in part due to her disability, but also I was terrified of the pain I’d have to endure if she didn’t survive,” Beaumont said. “I remember being horrified by our doctor telling us that we might be comforted to know that she might die before us.”

Doctor telling Beaumont Beth might die before her.

Beaumont takes these hurtful comments and catalogues them in the pages of her book as a way of challenging the prejudice Beth has faced. “My hope was to shed some light on the way we all think, to some degree, about disability,” she said.

Illustration that says "what we call people makes a huge difference in how we see them."

Writing “Hole In The Heart” has helped Beaumont process the years she spent overwhelmed by her daughter’s diagnosis and the care she’s required to thrive. As therapeutic as the illustration process has been for Beaumont, she hopes to give back to other parents who find themselves in a similar situation. “I hoped that the book would be helpful to other parents in the same situation and would explain something to others too, not just about Down syndrome, about the nature of parenting,” she said. “In some ways drawing her for the book, gave me an opportunity second time round, to properly adore and admire her, in the way that I felt she had missed out on as a baby.”

Drawing of Beth

Beth, who is now 15, has read the last section of Beaumont’s book, which was illustrated specifically for Beth to read. According to Beaumont, Beth likes the book, and loves the attention both she and the book have been getting. The day after “Hole In The Heart” was featured in the Daily Mail and The Guardian, Beth concealed her identity with dark sunglasses, as she was now “very famous.”

While Beth might not have been what Beaumont was expecting on March 25, 2001, she continues to surprise her mother – in positive ways.

Illustration of Beaumont and Beth

“At my book launch she signed all of the copies before they got to me and to my huge surprise asked if she could make a speech,” Beaumont said. “She’s quite shy so I wasn’t expecting it. She stood on the chair in the center of the room in front of over 200 people and picked out important individuals, thanked them for coming and told them which pub we were all going to after.”

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To My Son’s Kindergarten Teachers, From the Mom of a Boy With Down Syndrome

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Dear Teachers and Therapy Team:

It’s the beginning of the school year, and we’re so glad you’re a part of my son Evan’s team. Navigating preschool was a road of trial and error, and I expect it to be very much the same as he enters his kindergarten year.

Evan is more like his typical peers than different, with his own strengths and challenges. Just like every other child, it will take a little time for you to get to know Evan, and it will take us a bit of time to learn how things work in elementary school. We don’t expect everything to go perfectly right from the start, and we know we will all learn together. I hope this letter will help, and I hope you know we’re always willing to communicate and listen.

As you probably know, kids with Down syndrome have a whole or partial extra copy of chromosome 21. Each child with Down syndrome is affected differently by that extra chromosome. For Evan, it means low muscle tone, coordination issues, fine motor issues and challenges with regard to speech. But it also means determination and persistence when there is something he really wants to learn. When Evan is learning new skills, he may try them 10 times until they come naturally. It’s that determination that we believe will make him successful in school.

On the other hand, Evan can be very creative in his escape behaviors when something is very challenging for him. If he is having difficulty with a task, he may suddenly say “hug” and try to hug you. While I am sure he will adore you, please know that a hug during a difficult activity is an attempt to divert attention to escape the task. Therapists and teachers have turned that hug into a reward by saying “First [insert target behavior here], then hug.”

Evan may also get down from his chair or flop on the ground to escape difficult tasks. We often find that when he’s trying to escape, a visual schedule with breaks incorporated into that visual schedule will help keep him more on task even when academic concepts or therapy proves difficult for him.

Evan may also test you by eloping from you. As we’ve learned, that behavior is usually for the thrill of the chase. We’ve been following the rule that as long as he’s safe, we don’t chase him. He usually gives up and comes back when he figures out that no one will chase him.

Our philosophy is that we presume competence, allowing Evan to attempt the tasks his peers are attempting. If he’s having trouble with the task, we demonstrate it or help him with it a few times and allow him extra time or allow him to try again, which often promotes success.

If a picture is worth a thousand words, a video is worth 10,000, and a live demonstration with a teacher, therapist or peer is worth a million. At home, presuming competence has led Evan to success at skills such as making his bed, helping with laundry, using a broom, spelling some simple words and sounding out simple words as we read.

We’re also working on independence, but even we sometimes forget that. Evan will sometimes remind you that he doesn’t need you. This weekend, I shadowed him on the soccer field because he had been flopping on the field a lot during previous weeks. After a water break, I tried to return to the field with him. He said “Mommy, bye-bye. Sit down.” He wasn’t being rude. He was telling me in his own way that he no longer needed me on the field. He was right as he performed appropriately for the rest of the game. I have learned to trust him when he tells me he no longer needs me.

Evan takes a longer time to process information, so sometimes he may need a few seconds to let information sink in or even repeated instructions. Short commands (but not overly short) work best. I often use commands like, “Evan, please put your backpack on the bench. Please take your pajamas to the laundry room, or please take your plate and cup to the sink.”

One of Evan’s biggest challenges is speech. He is determined to communicate, but he sometimes forgets to use his words, and he may sometimes grab or push if friends get too close. At home, we’re working on teaching him to say, “Too close. Move please,” but he doesn’t always remember to say that when friends are in his personal space. Additionally, his words aren’t always clear. If you can’t understand him, ask him to repeat or to show you. That sometimes helps.

The children in Evan’s class will likely notice he’s different, and that’s OK. They may stare and ask questions. We always welcome the curiosity. It means they’re interested. 

Recently, a child at Evan’s daycare asked me, “Why does Evan talk funny?” I told him, “Evan has something called Down syndrome. That makes it a little bit harder for him to talk, but he’s trying very hard, and he loves to play, just like you.”

We support telling his classmates about Down syndrome because we’d like them to start understanding Down syndrome even if it’s very basic information at this point. While students may notice Evan’s differences, we also point out ways that he’s more like them than different. If a student notices that Evan runs differently, we talk about Down syndrome and say that his muscles aren’t as strong, but even though that’s different, the fun he has is the same.

We’re so looking forward to this school year, to your insights and to the academic and other skills we’ll all be supporting for Evan. We are sure that with this amazing team supporting him, he will have a successful year. If you have any questions, thoughts or suggestions, please know that you can email or call.

We’re all on this journey together.

Regards,

Julie Gerhart-Rothholz

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Jenna Rathgeber, Woman With Down Syndrome, Goes Viral in Photo at Her Hair Salon Job

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After buying her own hair salon — The Sanctuary Hair and Beauty in Victoria, Australia — Nikita Morvell realized she was going to need more help than originally anticipated. So Morvell called her sister, Jenna Rathgeber, and asked if she wanted a job. Rathgeber, 28, who was born with Down syndrome, was more than happy to help, picking up Thursday, Friday and Saturday shifts.

In the eight weeks that Rathgeber has been working at the salon, photos of her hard at work have gone viral – highlighting that people with Down syndrome can find fulfilling employment and excel at their jobs.

Morvell’s Facebook post reads:

Welcoming the newest staff member to the team!!
Jenna is my oldest sister.
Jenna has Down syndrome but no matter what she has so much determination and enthusiasm!
Jenna loves to help out and will brighten up anyone’s day.
Today Jen washed, dried and straighten Katrinas hair. Thank you so much to Katrina for being a fabulous client and well done Jen. Super proud of how you went.
So lucky to have you apart of the team Jen!

According to Rathgeber, her responsibilities around the salon include washing clients’ hair, sweeping, hair drying, hair straightening, cleaning color bowls, making teas and coffees, setting up clients and general cleaning. Soon, Morvell said, she will be teaching Rathgeber to color hair.

When asked if she likes working at the salon, Rathgeber told the Mighty, “ Yes I love it. I don’t have a favorite, I love everything.”

Morvell, 24, loves working with her sister too. “Jen brightens up the salon with her laugh and smile,” she said. “Jen is an absolutely joy to be around and works harder than anyone I have ever worked with! All my beautiful clients say hi to Jenna before even saying hi to me. They absolutely love her! Jen makes my job so much easier!”

Now that she’s had the opportunity to work with her sister, Morvell wants to encourage more businesses to hire people with Down syndrome. “The determination and work ethics are incredible,” Morvell told The Mighty. “Down syndrome isn’t a disability, it’s an ability! Don’t discriminate.”

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A Love Letter to My Sister-in-Spirit With Down Syndrome

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The following is a love letter to a friend who has lit me up with joy and friendship and laughter. She feels like a sister. But don’t mistake her infectious laugh and bright smile as playfulness without purpose; this woman’s got impact.

I met Brittany Schiavone two years ago. Today, she’s a 27-year-old woman thriving with Down syndrome, and the creator of a nonprofit called Brittany’s Baskets of Hope. Her mission is to spread resources, support and, of course, love to families that have newly welcomed a child with Down syndrome into their lives.

I remember meeting her two years ago and thinking to myself, “How many 25-year-olds are living their purpose, or even know what it is?” And there she was, 25 and refusing to let anyone shrink or diminish her.

Brittany, this is my love letter to you. You always remind me that we’re not alone: “I want every baby with Down syndrome to know she can do anything, really, really anything,” you say. So my wish is that this letter celebrates not only you, but reminds every girl or boy of every different ability that she or he is worthy and oh so mighty!

To my sister-in-spirit with Down syndrome,

Do you know how lucky I feel to have you in my life? Thank you for all the heart and star and flower emojis you text me and, of course, your favorite smiley face with the cool shades. Yeah, you’ve got style, too. 

I hope you never stop expressing who you are and how you feel, even if words sometimes feel complicated to get out. You’ve taught me that hugs and hand-holding run deeper than words.

brittany and her friend smiling

Have you noticed, my friend, that your laugh always lights up mine and that your joy never fails to spill over out of you and into everyone else? You steal the room, girl. Every time. Your laughter is not contagious; it’s magnetic. And so are you. Remember that.

Remember, my dear sister-in-spirit, you have purpose. We need your purpose for the world to be full. What your friendship has taught me is that we are connected (even when we can’t see it). For all of us to soar, each one of us needs to soar. I am amazed that, every day, not only do you know your purpose, but you live it. When we are ourselves, we shine so much brighter.

Dear sister, do you know you are a queen? Do you know you should always take up the space you deserve, that you should always use your voice or your song or your dance to express your essence in its fullness? Never shrink, my friend. You are worth too much.

And never let anyone dismiss you based on how you walk, how you talk, how you perceive the world, or how you look. You are beautiful. Exactly as you are. Embrace your gorgeousness.

And, finally, thank you, my friend, for your humor and creativity. Thank you for always singing in the car with me and reaching over to raise the volume every time Meghan Trainor comes on the radio. Thank you for rocking hair brushes as microphones with me and for always ad-libbing Derek Hough’s name for us when Meghan sings, “Dear future husband…”

After meeting you, I know for sure that love and friendship move the world. There is no room for hurtful words between us, for mean language that divides us. This is our chance to stand up together and know that, together, we are stronger. When we’re not afraid to be ourselves — or let anyone else be who they are — and we join forces, we all rise, all people of all abilities.

brittany making a heart with her hands

May you continue reminding everyone you come across that we all deserve to be seen, heard, and loved. You are worthy, my friend. Thank you for your light.


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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