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Why Allies Matter to the Down Syndrome Community

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The wheel has turned round for a fifth time since my son Rukai joined humanity, and here we are on the cusp of another World Down Syndrome Day  —  Tuesday, March 21. “Yeah, rah rah, so what?” you might say. “What on earth can you tell me that someone already hasn’t?”

AHA! There’s the rub…

I can’t tell you a thing.

I can’t tell you a thing, because just as I predicted five years ago, Rukai is pretty much exactly like any other kid, and there’s only so much clinical jargon I can hurl about when it comes to the condition which is supposed to make him an anomaly.

But (and you know where this is going) he’s still not. He’s a kid. A 5-year-old boy called Rukai. He is no one to fear, nor to pity, nor to discard.

A kid with possibility. A future. Feelings and emotions and a distinct, raging lack of opportunity lain before him by others because he has a learning disability.

That is what is to be pitied. But I digress…

Of my son, I can’t tell you a thing, other than to ramble on about what he has learned, how he’s developed, how much more deeply he’s embedded himself into my heart — a heart which in size is quite pathetic in comparison to his own. That little, huge heart which seems to me to begin at “delight” and end at “joy.” That heart which loves first, questions and answers all in one breath and demands to light up, to elevate, to soar.

I have not seen Rukai do self-pity, or jealousy, or hatred, or envy, or malice.

He sure does crabby and stubborn and annoyed, but the real dark stuff? No, I have only seen light here.

And this is a problem, how?

The other day I saw a clip of some televised interview where the subtitle still referred to my child as a “Down baby”— those poor uneducated editors or producers or whomever’s job it is to categorize human beings throwing that phrase out as they’d throw my boy out, without any inkling of what they’re missing. The presenters’ discomfort seemed palpable to me, as if they no idea where to look or what to say other than “he’s so cute!”

But I know better. So many of us know better. And as God is my witness, I hope with all my nattering for half a decade, and from all the others who know, with all our angst and anger and fear and upset and triumph and compromise and adjustment, with all those things…

I hope you know better, too.

Unless you want a full run-down on every milestone my son’s hit, or every holiday we’ve taken, every party we’ve attended, every school day we’ve enjoyed, every dance class we’ve loved, every friend we’ve made.

I can’t tell you a thing.

Because what I’d say would be so typical, so ordinary, so normal, that it would bore you to tears. But out there in society, there is such an undertow about this condition, the misinformation churning, threatening, sucking people under the mire of falsehoods, of confusion, of gut-wrenching fear.

Lies, lies and damned lies.

Yet here I sit, pounding away on keys that have so many stories hidden within them. I know the past year has been difficult for the Ds community, in terms of political tides, so-called medical “advances,” those things which, prior to having Rukai, I would have welcomed with open arms. Because I only heard what medicine and society were saying: “Problem.” I only heard what fear was saying: “You can’t handle it.”

And today, five years on, I answer them all: Joy. Fortune. Stronger than you think.

I won’t kid you. Life is hard. But before Rukai, life was harder.

Because before Rukai I didn’t have unconditional love. I didn’t have someone who was like a sponge, eager to learn and sharp as a tack. Although he takes longer to learn, he does learn. But more importantly, I learn.

More still, you learn.

So now that you’ve heard me for that half-decade… Now that I’ve written those words which stick in your craw, which jab you like a sharpened elbow in a shopping mall…

Take them.

Take them in, pack them up, wrap them in a tight bow, and give them away.

Go ahead and teach someone else. Tell them. Help them see. Help them understand.

Down syndrome is not a disaster. It is a difference. People with Down syndrome are people. They are not a malfunction. They are not a flaw. They are not a problem.

They are not “they.”

Rukai is my son. Rukai is my heart. Rukai is my world. Rukai is a person. He is not “Down syndrome.”

Since the day he was born, I made a promise to him, in my cold hospital room, listening to Adele singing about a fire starting in her heart. Mine was blazing too.

“I’ve got your back,” I whispered. “Welcome to the world, little man.”

If you’re reading this, if you are feeling this, if you care about this — take it and teach. Welcome him to the world once and for all.

I cannot do this alone.

#WDSD17

Follow this journey on Down In Front, Please.

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What I'm Celebrating on World Down Syndrome Day

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World Down Syndrome Day is celebrated every year on March 21 (3/21). Fitting, because an individual is diagnosed with Down Syndrome when they have three copies (instead of two copies) of the 21st chromosome. Down Syndrome International recognizes the day as one to “help raise awareness of what Down syndrome is, what it means to have Down syndrome, and how people with Down syndrome play a vital role in our lives and communities.”

Many people in the community, myself included, tend to happily celebrate the day and celebrate Down syndrome itself. I feel like there is so much to celebrate. So much to celebrate? If I was reading that statement before my child with Down syndrome entered my life I think I would have a hard time understanding what that meant. Why would one celebrate the difficulties that often come with Down syndrome? Because they’ve taught us perspective on what is truly important in life. Those issues can be big ones, life-changing, but they have taught me what to worry about and what not to waste my energy on. That is only one of the many reasons why I’m celebrating on World Down Syndrome Day.

I’m celebrating having risen above a difficult diagnosis and becoming stronger because of it.

I’m celebrating that Down syndrome is not scary like I once thought.

I’m celebrating the feeling that I am so lucky to have this unique individual in my family’s life, this individual whom I often find myself staring at in amazement.

I’m celebrating the joy my child brings me and my family.

I’m celebrating the unique physical Down syndrome characteristics that make my toddler so cute – her almond shaped eyes, her tiny ears and nose.

I’m celebrating the new friends I’ve made since entering this community, friends from as close as a few blocks away to as far as other countries.

I’m celebrating the diversity that Down syndrome brings to the world.

I’m celebrating the education my daughter brings to strangers on the street who may not know much about Down syndrome but then see her and interact with her and realize she really isn’t that much different than any other child.

I’m celebrating the advancements that have been made related to Down syndrome such as inclusion in schools and longer life span thanks to medical discoveries.

Most of all I’m celebrating that I am happily on my own unique parenting journey and that Down syndrome is a welcomed part of it.

Follow this journey at www.threewithatwist.com.

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Thinkstock photo by Den Kuvaiev

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This Coffee Shop Hires People With Down Syndrome And So Much More

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Hugs & Mugs cafe sells a variety of retail items, speciality coffee and gelato and is entirely run by people with Down syndrome.

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This Place Is So Much More Than Just a Coffee Shop.

Hugs & Mugs, located in Hoffman Estates, Illinois, is run by adults with Down syndrome.

Opened in 2014, Hugs & Mugs is a full-service retail, speciality coffee and gelato cafe.

Hugs & Mugs sells custom mugs, apparel, calendars and jewelry.

The cafe is part of Gigi’s Playhouse Hoffman Estates, a down syndrome achievement center.

Prospective employees take a free 12-week course focusing on confidence, health and workplace skills.

Then they are enrolled in an 18-week career training with Hugs & Mugs.

Employees run every aspect of the business including design, production, food prep, baking, packaging and customer service.

To learn more visit gigisplayhouse.org/hugsandmugs.

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This Man With Down Syndrome Expresses Himself Through Photography

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Geoffrey Mikol is a professional artist with Down syndrome who owns his own gallery, River Bend Gallery in Galena, Illinois.

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This Man with Down Syndrome Opened His Own Art Gallery

Geoffrey Mikol, 23, is a professional artist, who uses photography to express himself.

Mikol has been studying and practicing photography for almost a decade.

Now he owns River Bend Gallery in Galena, Illinois.

Mikol started his business in college, showing his work at Chicagoland art shows.

After graduating, he decided to pursue photography full-time.

His entire collection can be seen at River Bend Gallery.

To learn more, visit riverbendgalleries.com.

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Why I Advocate for My Son With Down Syndrome, Even With the Pediatrician

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We walked into the pediatrician’s office for a routine appointment. The pediatrician barely said hello before asking me how Harry was doing and if he was “thriving.” Of course, I always think my son is doing amazingly, but there was something in the tone of the doctor’s voice that made me wonder if he felt different. Perhaps he worried I was in denial of my son’s Down syndrome diagnosis —  a mum with rose-tinted glasses, attributing a child’s grunting as talking, or arms flailing around as a purposeful wave.

When he asked questions, I felt it was with a tentative tone which came across to me as negative assumptions:

“Is he making any attempt to try and roll at all yet?”

“Does he try to make any little sounds?”

Why not just, “can he roll over?” “is he babbling?” He seemed shocked when I said my son was rolling and babbling — after which, Harry proceeded to be a little chatterbox and I’d never felt more proud. The whole appointment felt this way to me. I left feeling angry because I wondered if the doctor had presumed my son wouldn’t be doing the things a “typical” baby of his age would be doing because he has Down syndrome.

When I later received a letter from the pediatrician reviewing our meeting, my anger felt justified. I barely made it past the first line of the pediatrician’s letter, which stated, “Problem: Down syndrome.”

Wait a minute… what?

Firstly, Down syndrome itself is not a “problem.” It can lead to medical and developmental issues, but it is not in itself a “problem.” Secondly, to word this in such a negative way feels insensitive and insulting to my son. I believe it also reflects upon the outdated attitude of some health-care professionals towards Down syndrome.

I was saddened that this happened, not only for Harry to have been labelled a “problem,” but also because some of us parents might be more sensitive to this issue. Some new parents will be struggling to come to terms with a diagnosis of Down syndrome and such negative terminology could make their acceptance harder.

We received an apology from the pediatrician, as well as an assurance this wouldn’t happen to anyone else. I will always fight for Harry to be seen as equal. He is an incredible child, with much to show the world — even if sometimes it takes him a little longer to do it.

Like Alan Alda said, “Your assumptions are your windows on the world. Scrub them off every once in awhile, or the light won’t come in.”

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21 Moments With My Daughter With Down Syndrome

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It’s just an extra 21st chromosome. One piece of genetic information that seemed at one time to define my daughter. For me, Down syndrome was a huge and overwhelming diagnosis back in 2006 when Jaycee was born and diagnosed.

Time has passed, and my attitude has changed since her birth. Down syndrome is just part of her story and ours. It is not the story.

In honor of World Down Syndrome Day, here are 21 moments from the story of my family’s life with Jaycee.

1. First ultrasound picture — It was a glimpse of my first-born with knowledge that a daughter was in our future.

2. Snuggles after delivery — Before we knew about Jaycee’s Down syndrome and atrioventricular canal defect, there were a few hours when my husband and I just marveled at our new baby without worry. We examined every finger and smiled at every movement and sound.

3. A doctor’s announcement — After waiting four long hours during Jaycee’s open-heart surgery, I was relieved to hear the surgery went as planned and all was well with our infant.

4. First wobbly steps — Jaycee took her first little steps during a physical therapy session. All those hours in therapy sessions and hard work paid off!

5. Walking for Down syndrome — Our family teamed up to raise money for our local Down syndrome group and participated in an awareness walk. It would be the first of many times “Team Jaycee” united.

Black and white photo of mom and daughter with [@specialpurposedlife] on the photo

6. The best word ever — There’s nothing sweeter for me than hearing my child say my name. “Mama” melted my heart.

7. First school drop-off — Taking Jaycee to preschool as a little 3-year-old resulted in tears from one of us. I’ll let you guess who.

8. Jaycee becoming a big sister — During my pregnancy with my son, I explained to Jaycee she was going to have a baby brother soon. Right after Elijah was born, Jaycee came into the hospital room to meet him. She signed, “baby,” as she peered into his bed while the nurse weighed and measured him. She instantly loved him.

9. Self-feeding — After months of occupational therapy, hand-over-hand spoon feedings, and trials of many spoons, the day Jaycee fed herself with a spoon was cause for celebration. We could eat together as a family at the same time, and she could be more independent.

10. Second first steps — After a long and serious stay in ICU when she was in first grade, Jaycee came home with a wheelchair. She could not climb steps; she could not even sit up unsupported. When her strength came back slowly and she started walking again, it was a gift to watch.

11. Jaycee, the competitor — Jaycee loved participating in the softball throw at the track-and-field for Special Olympics. She kept looking at those of us in her cheering section to make sure we were all paying attention.

12. The three big words — “Love you, mama!” After weeks of breaking up this phrase into simple word approximations, Jaycee one day repeated it back. It sounded like, “Uh oo, mama,” but it was the beginning of a beautiful exchange between us.

13. School dancer — After some bravery on my part, I signed Jaycee up to participate with her peers in the yearly school fundraiser cheerleading and dance group. Jaycee knew the moves and proved she could do amazing things if I didn’t limit her.

14. Elsa and Anna — Jaycee was fortunate to receive a trip through Make-A-Wish, which meant she got the royal treatment at the Orlando theme parks. She absolutely loved meeting the “Frozen” cast after a show. Her joy was precious.

15. A lifelong relationship — At a family gathering, Jaycee marveled at her cousin dressed up as a deer. From then on, Jaycee fell in love with her cousin, who she refers to as, “Deer,” ever since.

16. A pep rally — Jaycee’s school held an energetic pep rally for the athletes participating in Special Olympics. Jaycee ran through the lines of smiling cheerleaders. Instead of bursting through the paper banner at the end, she crawled underneath it. It was such a funny moment.

17.   A friend party — When your elementary school daughter wants to have a birthday party with friends, you make it happen.

18. A baptism — After weeks of teaching and preparing, Jaycee went through the water baptism at church like any other child. She came up out of the water smiling, just like all of us who were surrounding her.

19. My daughter on stage — During a pageant for girls with intellectual disabilities, I saw my little girl transform into a princess and enjoy being in the spotlight. Her abilities were celebrated, and she continues to show off her crown to visitors at our home.

20. Water coaster enthusiast — Water coasters are a thing and my daughter loves them. While I scream my head off wishing for the ride to come to an end, my daughter shows no fear and laughs all the way through.

21. Home plate with Molina — When Jaycee won an opportunity to meet Yadier Molina during a Cardinal’s game through our Down Syndrome Association, there were several seats filled with our friends and family cheering for her. Molina autographed her baseball right after she did.

Our life with Jaycee has set us on a path we did not anticipate. Then again, who could predict some of these moments we’ve had with her. Some of them have been extraordinary, a few have been challenging, and others have been gratefully mundane.

Time has shown us there is a full and good life beyond a diagnosis. Happy World Down Syndrome Day!

Follow this journey on A Special Purposed Life.

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