daughter with Down syndrome wearing white dress hugging dad'sface

I Missed World Down Syndrome Day Thanks to Parenting

I am a father to a beautiful little girl with Down syndrome. Perhaps I should have taken time on World Down Syndrome Day to get out there and advocate for my child, raise awareness and make my voice heard. Except I’m writing this after World Down Syndrome Day — which was on March 21st — because much like many other parents of young children would know, things don’t always go according to plan.

March 21st is World Down Syndrome Day because the numbers associated with the date (3/21) refer to the 3 copies of the 21st chromosome, which is Trisomy 21 and otherwise known as Down syndrome. March 21st is a day when people with Down syndrome and those who are a part of their lives attempt to raise public awareness and advocate for inclusion — as well as take part in various events and activities throughout the world.

One thing you might have heard is that people with Down syndrome are “more alike than different” from anyone considered “typical.” My daughter loves to make you laugh, loves music, loves to sing and dance. She loves to color, to play dress up and loves to pretend. Much like any other typical kid, she can also get fussy, get upset and want to get her way whenever she can. She is a child and has the same traits and behaviors as any other child. We may go on a few more doctor’s visits during any given year, and her time-table for certain milestones may be a little different from other kids.

Something I seldom see posted about is what I refer to as “parenting awareness.” Ever since we first received the prenatal diagnosis our second daughter would be born with Down syndrome we encountered a variety of reactions: those who offered condolences or pity and those who didn’t think it was a big deal. As someone who has been a father to a typical daughter for 6 years, and a girl with Down syndrome for 4 years, I can say in my experience it has not been a big deal.

Yes, my youngest has faced challenges and will continue to do so throughout her life. As her father it’s my job to help raise her, protect her and prepare her the best I can for her future. But that is no different than what I do for my oldest daughter. People may think a parent of a child with Down syndrome is unhappy or struggling, and I consider this a misconception. The struggles I face are very much the same as anyone trying to raise two young kids. They both want things, both want your attention, both get upset for seemingly no reason. I believe it all comes with the territory of parenting, whether the child has a disability or not.

Dad posing with daughter with Down syndrome while she makes a silly face at the camera

Am I exhausted often? Of course I am. I have two girls with a lot of energy and I have troubles keeping up with both of them.

Do I worry about my children and their future? Of course I do. I am their father and I love them with all of my heart and want the best for them.

Am I unhappy? Not in the slightest. If you see me around and there isn’t a smile on my face, I may be thinking about the countless things I need to do or get done for the day/week/month.

Does any of this sound familiar? Sound like something you can relate to? Maybe my flavor is a little bit different than yours, but it’s all part of parenting. Much like the saying that people with Down syndrome are “more alike than different” from those considered “typical,” the same has been true in my parenting experience. I’m very much like you, I love my kids and they can be exhausting at times. But being their father is the most amazing and rewarding experience. I would have loved to write this for World Down Syndrome Day to help raise awareness, but I didn’t get the chance because I was a bit too busy with parenting.

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Ruby's Rainbow Helps Adults With Down Syndrome Pursue Higher Education

Ruby’s Rainbow is a nonprofit that provides scholarships for adults with Down syndrome who want to pursue higher education.

Read the full transcript:

Ruby’s Rainbow Helps Adults With Down Syndrome Pursue Higher Education.

The nonprofit grants scholarships for post-secondary education, enrichment and vocational classes.

Learning doesn’t stop at high school and Ruby’s Rainbow wants to help each recipient reach their highest potential.

The nonprofit was inspired by Ruby Plachta, who was born with Down syndrome.

Recipients have been accepted into schools across the U.S. like George Mason University and California Institute of the Arts.

Recipient Dylan Kuehl was the first person with Down syndrome to attend The Evergreen State College.

“They’re doing all the things that I hope and dream for my own daughter.” – Liz Plachta, Founder of Ruby’s Rainbow

You can follow the journey of each scholarship recipient on Ruby’s site.

To learn more, visit rubysrainbow.org.

Mother and child playing in park near tree

Staying Calm When You Educate People About Down Syndrome

For those who know me, I can be hot-tempered, saucy-tongued and not shy about telling you what I really think. I can still get that way, but after having my daughter, Erin, I have learned the value of staying calm.

For the first six years of Erin’s life, I really didn’t butt into people’s lives or try to speak out too vocally for my daughter. “Just keep us invisible and they won’t bother us.” However, a conversation I had with an acquaintance of my husband seemed to have flipped a switch. My husband and I were at a wine dinner with 100 other people and I sat next to a gentleman who had a fascinating life story. I was drawn into it, even talking about his fears of having a child with his wife because they were older when they started trying. He actually said, “My wife and I were afraid we would end up with a mongoloid.” When I heard that, all of my blood drained from my body. So many thoughts went through my head, but fortunately a quick, deep breath helped patience prevail. I said, “Actually, I have a daughter with Down syndrome, and that is how they prefer to be referred to now.” As I was doing an inner happy dance at my ability not to splash pinot noir into his face, he looked mortified and apologized profusely. I stayed calm and said, “I understand your concerns about having a child when you’re older. But, now that you are aware of how to refer to someone with Down syndrome, I’m sure you will continue to tell your story with that label instead of ‘mongoloid.’” He smiled and we kept talking for several minutes.

Since that day, I’ve gone out of my way to meet and talk to people with Down syndrome who are out and about or with their families. I recently ran for my local school board to help promote the importance of inclusion starting in school. While I did not win, I have found improvements in my daughter’s school experience as well as other students with disabilities. Parents of “typical” children approach me and talk about what a joy Erin is when they volunteer in the classroom. When we go to playgrounds on Saturdays, her classmates run to play with her. It’s such a great feeling.

That’s what it comes down to: a teachable moment. There are many people who just don’t know what they don’t know. Being calm and patient when trying to correct their misunderstanding can create a beautiful change. Don’t be afraid. Don’t try to be invisible anymore. Take a quick, deep breath, and help educate the world one person at a time about the joys and benefits of inclusion and acceptable labels.

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Thinkstock image by DenKuvaiev

Maria's daughter, Jordan Grace.

Why I Can't Imagine a World Without Down Syndrome

I recently watched a documentary called “A World Without Down’s Syndrome” (spelled the English way). The title in itself makes me sad. Yes, my initial response to the news that our second baby would have Down syndrome was shock and fear of the unknown. But I thank God I had the time to get to know the baby inside me and know she had both a heart defect and Down syndrome ahead of time. I had time to process the gift and it made her birth a celebration, not something to mourn.

Hindsight is always 20/20, and though people could have said and did say amazing things to me about their loved ones with Down syndrome, I wasn’t ready to hear them or to accept my future. Unless you are in our shoes, it’s hard to picture having a child with Down syndrome and really experiencing this kind of love. It cannot be put into words, though I’ve tried many times — the feelings I have as a mother, and what I see each day in her sister’s eyes and in her father. Just incredible, unconditional love.

I believe we are called #theluckyfew for a reason. We have the opportunity to know what it truly means to love someone with Down syndrome. I’m not here to convince anyone to love my daughter, I just want to share what I know as an insider.

There are many forms of screening, and we had a few of them done. Down syndrome was not detected in the early stages of my pregnancy. We were told at our 20-week ultrasound that our baby had a heart defect most commonly correlated with Down syndrome.

We, like many others who have been in our situation, were devastated to say the least. Why? Because the doctor who delivered the news was very much for termination of the baby. He told us the baby, who we now knew was the little sister our oldest daughter had prayed for, would be a burden. He tried to talk us into an abortion for a period of time.

As a practicing Catholic, I’ve never believed in abortion. But as faithful as I’ve been all my life, this doctor was trying to talk me into terminating a 20-week-old life inside me. In such deep despair, I found myself in doubt. This doctor, who never spoke about anything but termination, failed to tell me what her life would truly be like.

He was completely wrong. She’s not a burden; in fact, she’s a blessing.

I came to terms with the Down syndrome diagnosis at some point during my pregnancy. I don’t remember when, but I did. I didn’t embrace it, however, until Jordan Grace turned 2 years old. After writing a children’s book and finally filling out an application to become a member of the Down syndrome societies, both local and national, I jumped in with both feet.

We often don’t imagine that doctors could be wrong. We believe what they tell us. But along my sweet journey of endless families telling the same story, I’ve seen how they weren’t given the facts, either.

I never imagined my life would turn out this way. It’s actually a lot better than I expected it to be. Jordan Grace is a regular little girl; she talks, plays, laughs and enjoys every single minute of her life. It kills me to think of my life without her.

Her life is worthy and her life means something. She is a valuable human being and she deserves to be loved, respected and included. It is my life’s mission to advocate for her and for all who are “different.” I cannot imagine a world without Down syndrome.

I have so much pride in my family. We are not perfect, no one is, but we sure are blessed and happy with the way our story turned out. This life is about this beautiful journey we’re on. I am loving every speed bump, every traffic stop, every green light, and every yield!

For those of you who walk with us, we are proud to know you. For those of you who judge us, it doesn’t bother us, because we are living this beauty. For those of you who pity us, you wouldn’t if you knew this kind of love. For those of you who learn from us, we are humbled. For those of you who love us, thank you for opening your heart! We will keep sharing our story of love.

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What Other Parents Helped Me Recognize About My Son's Down Syndrome Diagnosis

I am reluctant to admit I was pretty sad when we received Henry’s birth diagnosis of Down syndrome. I thought I was going to have this “perfect” baby, and now my head was filled with all of the things I thought he wouldn’t be able to do. While I accepted the diagnosis relatively quickly and loved our son unconditionally, I still felt concerned about the future. What did this diagnosis mean for him? What did it mean for our marriage? What did it mean for our family?

I read several books and scoured the internet for support groups those first few weeks. I soon noticed a common theme.

When parents of kids with Down syndrome were asked if they would change their child and take away Down syndrome if it were possible, many parents I read about said no. I did not only read  about one or two parents, but dozens of families. Many of them expressed even if it were possible to take away the Down syndrome, they wouldn’t.

This struck me. I started to realize Down syndrome might not be so bad. After all, if it were, wouldn’t all of these families take it away given the opportunity?

It was the first step in me realizing our son’s future is as bright as we make it to be. He has many opportunities, the same as any other child. Down syndrome doesn’t take away from him, it makes him wonderful.

A family of four, mom, dad, little brother, and newborn baby with Down syndrome

I understand now what these parents were saying when they expressed they wouldn’t take anything away from their child if they could. I know whether Henry was born with 46 or 47 chromosomes, I wouldn’t change anything about him. Henry is Henry, and he’s everything we could have ever wanted in a child.

So Henry, if someday you read this, just remember like Bruno Mars sings, “If perfect is what you’re searching for, then just stay the same.”

Follow this journey at The Lucky Wells

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Businesses Founded By And For People With Down Syndrome

These businesses support the idea that people with Down syndrome are just as capable of success as anyone else.

Read the full transcript:

It’s time to stop underestimating people with Down syndrome.

Here are just a few of the businesses founded by or for people with Down syndrome.

John’s Crazy Socks – An online sock store owned by John Cronin. johnscrazysocks.com

21 Reasons Why – Clothing line by Australian model Madeline Stuart. 21reasonswhy.shop

River Bend Gallery – Professional artist, Geoffrey Mikol’s art gallery. riverbendgalleries.com

Hugs & Mugs – A retail and coffee shop in Hoffman Estates, Illinois. gigisplayhouse.org/hugsandmugs

Reason to Bake – A bakery that specializes in Gluten-free cookies. reasontobake.com

Buba Bar – This will be the first accessible cafe in Croatia. Tentative opening June 2017

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