11 Things Not to Say to the Parent of a Child With Down Syndrome

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1. “Didn’t you have the test?”

Not that it’s any of your business but if you must know, no I didn’t! And my reason for that is because prenatal testing would not show me how freakin’ awesome she would be, it wouldn’t tell me how smart she would be, how quickly she will learn things nor how she will sit on the couch and laugh at the funny things in Peppa Pig before she’s 2.

This girl loves and knows love, again not testable and it definitely wouldn’t tell me how she would complete our family. It wouldn’t tell me how she will light up a room every time she walks in, how strong and independent she will be or how much she would add to society.

Yeah you read that right, my child with Down syndrome contributes to society! In a world where it’s hard to get a smile out of a stranger let alone a hello, this girl works a crowd like no one I’ve ever met and she’s not even 2 (maybe a political career is in her sights).

There’s a whole shopping center of people who go home with a warm glow in their heart because Eden took the time to point them out, wave, say hello and smile at them like no one ever has before. You can’t buy that kind of affirmation.

2. “So how high-functioning will she be?”

OK, I know you mean well by this, but to be honest it’s a little frustrating. The equivalent is me asking you, “So how smart will your kid be?”

Down syndrome is not “on the spectrum.” You cannot have a percentage of it, or only a little bit; there is no grading! You either have an extra copy of the 21st chromosome or you don’t. Just as typical children are all different, so are all children with Down syndrome.

Just as your child will be the best they can be through a good education, extracurricular activities for better life skills and with you helping to problem-solve any barriers they face, through early intervention, different therapies, good nutrition and a whole lot of love, Eden will be the best she can be.

My response to this one now is always, “Define high-functioning.”

young girl standing next to glass door looking out on patio

3. “You know it’s part of her ‘syndrome.’”

There are many characteristics associated with Down syndrome, but that doesn’t mean every individual with Down syndrome has every characteristic. So when you try to tell me my child will be “stubborn” or contract a life-threatening illnesses because “it’s part of her syndrome,” understand that I will internalize a massive face-palm before turning and walking away.

4. “She’ll be able to work in a sheltered workshop.”

Really, haven’t we come further than this? I think the term you may be looking for is “supported employment.” I have three friends who work in supported employment and they love their jobs; it’s a complete fit for them. I also live in a community where people with Down syndrome work in typical employment. Either way, what’s the big deal? But I’m pretty sure we don’t need to surmise our kid’s occupation before they even start school, let alone when this was said to me at diagnosis.

5. “You know she’ll never get married!”

Is that really what you think? And if so, you really shouldn’t have verbalized it. Eden may get married, she may not and it would be the same if she didn’t have Down syndrome.

Eden will live a full life. She will go to school, gain employment and, much to her father’s horror, she will have boyfriends. Who knows what will happen after that? What I do know is that society is changing and there are wonderful people all over the world with different abilities getting married. At the end of the day, it’s her choice, not yours.

6. “At least she’ll always be happy.”

This is another face-palm one. People with Down syndrome experience an array of emotions just like their typical peers. Eden cries, gets cranky, gets frustrated, gets tired, gets emotional and is also happy at times.

I think what you’re trying to say is that her happy is so expressive. Compared to some of her friends, Eden’s happy is a whole body thing; when she’s happy, it spills out of her very being and is highly contagious.

young girl strapped in stroller crying

7. “What’s wrong with her?”

Sometimes you just have to laugh, and that’s exactly what I did after hearing this statement. This was yelled at me by the shop assistant from across the store, a good 10 meters away so everyone in the store would turn and stare.

It was while Eden still had a nasal gastric tube, and while I believe this comment was aimed at the tube and not at her diagnosis, it wasn’t the politest way to ask. I explained the tube this time and then every time we visited the store for the next 10 months.

8. “She couldn’t ask for a better family!”

Darn tootin’, its true, Col and I are all kinds of amazing super parents. But while in context this is meant as a compliment, it also comes in other forms of statements, and the most common is, “God only picks special people to parent special children.” The choice is really ours.

9. “Oh, that’s a shame!” (This also comes out as “I’m sorry…”)

What ever happened to the good old-fashioned celebratory greeting at the birth of a child: “Congratulations!”? So simple, yet eloquent, goes well with pink or blue and trust me when I say after the whole birthing process, it’s all any parent wants to hear (diagnosis or not)!

10. “How long will she live for?”

My response to this is always, “I don’t know, how long will you live for?” They stare at me blankly, and there’s an awkward silence while I internalize yet another face-palm.

11. “Are you sure? She doesn’t look like she has it.”

Yep, I’m sure…face-palm again.

These things and more have been said to me or my husband in the first 12 months of Eden’s life. Trust me when I say we don’t hold a grudge against anyone who may have said these things to us; we understand you’re not in our shoes and you weren’t aware. Our lives are about awareness now. This is awareness, and if everyone knew, awareness wouldn’t be required. So now you are aware; file it and use it as knowledge when you’re next chatting to someone who has a child with special needs.

I’ll let you in on a little secret: we just want our children to be treated like anyone else. It’s called inclusion. Ask yourself, “How would I feel if someone asked me this?” Chances are they’ll feel the same way.

Editor’s note: This post has been updated since publication to meet our editorial guidelines.

A longer version of this post originally appeared on Perfect by Design.


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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Why I Created a Comic Book Featuring a Superhero With Down Syndrome

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Comic books need me.

That sounds terribly presumptuous, doesn’t it? Before you judge, hear me out.

Almost five years ago, I was little more than a fan of comics. Sure, I’d been writing reviews, doing the occasional interview here and there. Writing comics? If you asked me about that then, my right eyebrow would have raised into a tiny mountain followed by a spew of coffee and a garbled “No.” I honestly had never thought about it, and there was this tiny event on the horizon involving the birth of my son. Multiple sonograms had told us he had a good chance of having Down syndrome and heart defects, so my brain was a little preoccupied.

The first year of my son’s life was full of surgeries, multiple near-death experiences and uncertainty galore. It wasn’t until the success of his last major heart surgery that I could think, let alone breath again. It was in that moment that my love for comics came rushing back. Except the difference now was that I was looking at comics through the lens of my son.

What comic books are out there for him? 

I scoured the internet, looking for comics that incorporated characters with Down syndrome. As time went on and with nothing to show for my troubles, I got upset. Juxtaposed to the “real world” comic books are supposed to be a place of acceptance, of inclusion. But for my son, comics would be just another place where he felt alone, left out, passed over. If I was lucky enough to share my love for comics with my son one day, how would I respond to his asking why none of the characters look like him? Why were there no stories about how amazing people with Down syndrome are? Which would lead me to this…

Why didn’t I do something about it?

That’s what drove me into writing comics. It’s something too important to leave up to the comic book industry. I mean, the industry is still struggling to figure out how to include women in their stories without exploding; there’s no way I’m waiting for it to figure out how to include people with Down syndrome. This is my son we’re talking about. That’s why it’s up to me, the guy who was overjoyed he didn’t have to take creative writing to finish his college degree. It was up to me to create a comic book for my son. That’s why comics need me.

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Unhappy with the state of comic books? Are there no comics out there for you? Go make comics. Or seek out and support the creators who are trying to make comics for you.

Comic books need you.

If you like comics that are for everyone, I hope you’ll check out “Metaphase.” Inspired by my son, it stars a kid superhero with Down syndrome. You can preorder it in the April edition of Previews via your local comic shop or through Amazon or Midtown Comics. In stores June 2015!

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This post originally appeared on Chip Off the Old Blog.

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The Moment I Decided to Keep My Baby With Down Syndrome

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The day after I got the phone call that my prenatal Panorama test results had come back positive for Down syndrome, I gave a friend a ride to the airport bus. When I told her the news and mentioned the possibility of termination she said, “That would be the compassionate thing to do.”

A sentiment echoed by author Richard Dawkins’ insensitive tweet in response to a woman who expressed her ethical dilemma if she were to become pregnant with a baby with Down syndrome. “Abort it and try again,” he wrote. “It would be immoral to bring it into the world if you have the choice.”

It’s easy to make statements like this when you have less than a 1 percent chance of ever actually having to make that decision. When it’s a live baby kicking inside of you, I believe it’s a different situation.

Getting a prenatal Down syndrome diagnosis threw me into a moral quandary that I wasn’t prepared for. On the one hand, this meant our child would have at least some degree of intellectual disability. On the other hand, it also meant our child would most likely grow up to be happy; in a recent survey of 284 people with Down syndrome, 99 percent reported they were happy with their lives, 97 percent liked who they are, and 96 percent liked how they look.

I’m not sure what the statistics are for the “typical” population, but my hunch would be the numbers would be far different. Most of the people I know would not say they’re happy with their lives or that they like who they are or how they look.

Which begs the question: Is it more important for our children to be smart or for them to be happy?

Which led me to an even deeper question. Why do we have children at all? They certainly do not make our lives easier.

These questions sat heavy on my mind as my husband and I debated our situation. Religion could possibly make questions like these easier to face. Since neither of us is religious, we were pretty much on our own.

One Sunday morning I woke up early and in the quiet of the morning decided it was time for some spiritual questing. I got dressed and made my way to the Unity Spiritual Center near my house.

The sermon that morning seemed particularly relevant to me. I blinked back tears throughout the service. After it was over I made my way downstairs to find out more about the church. A woman introduced herself, and we began chatting. I asked her what she did, and she told me she was a woman’s health consultant and used to be a midwife.

Suddenly I found myself weeping in her arms as I told her through sobs that I was pregnant and the baby had Down syndrome and a heart defect. She soothed me and told me that it would be OK.

She told me she’d only delivered one baby with Down syndrome when she was a midwife. She said the love in the room when the baby was born was stronger than anything she’d ever felt before.

She felt that the reason so many babies with Down syndrome had these heart defects was because their hearts were so big and full of love. “If love was revered as much as everything else, people with Down syndrome would be held in the highest regard,” she said.

It was at that moment that I realized that I was going to keep this baby no matter what. I’d already felt that amazing love she was talking about.

And why shouldn’t love and happiness be held in the highest regard? What else is there?

A peace settled over me that day and continued through my pregnancy. I felt as though my baby was reassuring me that everything really was going to be OK. My baby had a complete AV canal defect, which meant that instead of four chambers, he only had one. One great, big, open heart. And that great, big, open heart was sending me wonderful, pure love that enveloped me.

Unfortunately, my husband couldn’t feel the love coming from the baby the way I did. He struggled with his fears and worried his way through the entire pregnancy. The moment our son was born, it all changed. The love Benjamin brought with him burst into the room and filled my husband’s heart.

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It’s a strange journey we’ve had these past few months since he’s been born. With the trouble he’s had breathing on his own and the heart surgery looming in his near future, we live in almost constant terror of losing him.

And we still worry about what his future will hold. Despite the uncertainty about what having Down syndrome will really mean for him as he grows up, we’ve already become Down syndrome activists.

This past Sunday we woke up early, packed extra oxygen and drove down to Denver for the Step Up For Down Syndrome Walk. I was both excited and terrified as to what we might find there.

Right now Benny is just a baby. He may be a little more floppy and spend more time in the hospital than other babies, but for the most part he’s just like most babies. I knew that seeing older kids and adults with Down syndrome was going to give us a glimpse at what his future might be like, and that could be hard.

When we got there I was surprised by how many people there were and how few of them had Down syndrome. We made our way to the stage near the starting line, and I was just thinking that this was easier than I’d imagined when the announcer called forward a young man to sing the Star Spangled Banner.

His voice was strong and unmistakably belonged to a person with Down syndrome. The crowd cheered him on even as he struggled with some of the words. A mixture of tremendous joy and sorrow filled me at his imperfect delivery. I tried to hold back the tears but couldn’t stop myself from pressing my face into my husband’s shoulder and bawling.

True love means accepting things as they are, but that’s not always easy. Our society values intellectual ability and verbal capacity above big heartedness and joyfulness. Many people think it is kinder or more considerate to end a life rather than bring a child with Down syndrome into the world.

As a mother I want to protect my son from that world. I want to prove them all wrong, stick a finger in Richard Dawkins’ fat, stupid face. But I don’t know what the future will bring. I don’t know that my son will overcome all of the prejudices against him. I don’t know what level of ability or disability he might have. 

All I know is that for me, I’ve answered the question of whether it is more important for our children to be smart or to be happy. I believe it is more important for them to be loved. And I do love my son, whether or not he’s smart or happy. And that is why I have children. To teach me that kind of love.

This post originally appeared on Pixleydust.

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When I Wrote to A.C. Moore About Featuring People With Down Syndrome in Ads

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I’m what you call a bit of an advocate. I have a son with Down syndrome, and I spend a lot of my time raising awareness, raising funds and trying to make a difference for people with Down syndrome.

On my own, I write to companies that have inclusive advertising practices. I thank them for including people with Down syndrome (or other disabilities) in their ads. And for companies that don’t have inclusive advertising, I write to them and ask them to start inclusive advertising practices.

Then I became aware of Changing the Face of Beauty. This organization is trying to do exactly what I was trying to do. So I started posting on social media, using the hashtags #changingthefaceofbeauty, #imready, and #15in2015 (now #100in2015). The goal was originally to have 15 advertisers commit to including people of different abilities in their advertising campaigns, but it’s been so successful that they’re going for 100.

Earlier this week, I wrote an email to the “Contact Us” page on A.C. Moore’s website. Their ad and their website featured a beautiful little girl with Down syndrome because of a fundraiser they were supporting. When I wrote, I hoped the email didn’t go to a black hole.

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I said the ad brought tears to my eyes. I said that I have a 4-year-old son with Down syndrome and mentioned that it’s rare to see a television show, advertisement or any type of media that featured a child that looked like him. I told them all about Changing the Face of Beauty and the campaign for inclusive advertising. I also loved that the ad was in such close proximity to World Down Syndrome Day. I asked A.C. Moore to consider including children with Down syndrome in their advertising… but not just for a fundraiser.

I wasn’t sure the email would go anywhere, but…

Just a couple of hours later, I saw there was an email from an unfamiliar name: Mike Lyons, the VP of Marketing for A. C. Moore. Holy heck!

He said he’d thought about my email, and he couldn’t think of a place in the media where kids like my son were featured either. He didn’t know about World Down Syndrome Day, and he hadn’t heard of the Changing the Face of Beauty organization or their campaign.

He wanted a change. He wanted to have his company be one of the 100 companies. He wanted inclusive advertising, and he wanted to figure out how, on a moment’s notice, to celebrate World Down Syndrome Day at A.C. Moore.

He continued the conversation with me and with Katie Driscoll, founder of Changing the Face of Beauty. He wanted to put something in their daily email recognizing World Down Syndrome Day and Changing the Face of Beauty. Most companies move like molasses and make apologies when timing doesn’t work out. Mike and A.C. Moore were moving at lightning speed, embracing our request and celebrating those with Down syndrome who were also their customers. To all companies out there, when responding to your customers’ requests about inclusive advertising (or anything else, for that matter), this is what GREAT looks like!

ac moore world down syndrome day ad  Sometimes, when we send emails to the “Contact Us” section of a website, it goes nowhere. But sometimes, you find a Mike Lyons and a company like A.C. Moore, and it brings about a big change in the form of an ad celebrating World Down Syndrome Day and announcing a company’s commitment to Changing the Face of Beauty.

Keep writing, everyone. More and more companies are starting to figure out that those touched by special needs are their customers, and their customers of all abilities want to be recognized and heard. As more and more companies participate in inclusive advertising, we’re going to approach the holy grail… a time when inclusive advertising is the norm.

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How a Little Voice in My Head Helped Us Cope With the Diagnosis

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Dear Down Syndrome,

michelle brown the mighty When I first began to think about what I wanted to say to you, I searched my heart for anger or resentment. Surprisingly, I found none. I was so certain that I must hold some negative feelings that I attempted to force the words. None came. I realized that my feelings toward you were neutral.

While I acknowledged your presence and your impact, my heart can’t hold any anger. It is too full of love.

My baby boy, Sebastian, was born 21 months ago with Down syndrome. We didn’t know prior to his birth. We elected not to undergo any genetic testing because we knew we would not choose to do anything other than welcome and raise our child.

michelle brown sebastian the mighty I knew little about you but was flooded with negative images of delays, health issues and burdened parents. When we found out our beautiful, precious little boy had Trisomy 21, I cried. I grieved. I worried. I prayed to God, and I was consumed with fear.

A small voice kept telling me it was going to be OK and that Sebastian was a gift. I held onto that voice and the feeling of strength it gave me. The voice grew and became stronger than my doubts and fears.

As I held my little baby boy, cared for him and looked into his eyes, I knew the reassuring voice was right.

Sebastian is a gift. He has a special magic about him. His smile and his steady, wise gaze confirm this for me daily. I know I’m his mother and I’m biased as all mothers are and should be, but this little guy is something special. When he looks at you and smiles, you feels as if two souls are meeting. He engages the highest, best part of people and elicits such amazing love.

I can’t help but think that you, Down syndrome, played a role in this. Sebastian got an extra dose of the beauty of humanity along with that extra chromosome. For that, I’m so thankful and feel so blessed.

We created one amazing little boy, Down syndrome. Thank you.

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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6 Tips to Consider When Planning to Adopt a Child With Down Syndrome

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I was recently asked to share my experience with adopting children with Down syndrome. My hope is that with this post, I can share my heart as well as give some practical insight into what this journey has been like for our family and me.

Adopting a child with Down syndrome was not something I’d dreamed of all my life or had even been contemplating when we began our adoption journey. It came at me out of the blue one day as I was celebrating with my brother-in-law and sister-in-law, Derek and Renee Loux, as they committed to adopting three precious children from eastern Europe. I was on the phone with Renee, and she was talking me through an adoption website to show me the photos of the three boys they were planning to adopt. At the last moment, she said, “Oh Trace, scroll down to the bottom and look at the photo of the little blonde boy with Down syndrome. I would bring him home too, but Derek said, ‘Only three, Renee!’”

I scrolled down to the bottom of the page, and my eyes landed on the photo of the most beautiful little boy in the world. I fell in love. From that day on, I would always believe in love at first sight. In the deepest part of my heart, I knew this was my son. I would move mountains to bring him into my home and call him my own. Within seconds, I was on the phone with my husband, who came home to check on his crazy wife. My children were in the background, asking, “When can we go meet him, Mom?”

I didn’t plan this. I believe God did. I believe He knew from before time began that this little blonde-haired, hazel-eyed boy would be my son.

Aiden was 3 years old when we adopted him. Our first year home with him was filled with so many doctor’s appointments that I eventually lost count of them. We visited every specialized department under the sun: cardiology, infectious disease, our regular pediatrician, the Down syndrome clinic, ophthalmology, dental clinic, endocrinology… the list goes on. We had him evaluated through the school district for educational services, physical therapy, occupational therapy and speech therapy.

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At this point, here’s what I expected:

I expected to love this child.

I expected him to have developmental delays and possible medical issues.

I expected him to have fear and anger because of a painful past.

What I did not expect:

I did not expect to be admitted to the hospital within months for a lung biopsy because of a positive tuberculosis test or that he would eat an orange crayon in the dental clinic waiting room, making his exam impossible.

I did not expect to clean up the most horrible poopy messes on the planet from his hands, the walls and his crib rails.

I did not expect that one child could bring so much joy and delight to our family.

Two years later, we felt prompted to renew our home study again. This time, we would pursue a domestic adoption of a child with Down syndrome.

391985_10150414477863595_530028594_8485965_2130662424_n We were matched with a birth mom carrying a little boy with Down syndrome. Because of late prenatal care and diagnosis, there was a chance he would have a heart defect, but we were prepared to walk through that if needed. We prepared to welcome Mattie into our home the best way we knew how.

I expected to love this child, and I knew we would give him everything he needed to have the best life possible. I was grateful that we lived near such an amazing medical facility and that we had a wonderful Down syndrome community in our area. I felt ready.

I did not expect to spend the first 11 months of my son’s life in the hospital watching him face life-threatening illnesses, four surgeries (two open heart surgeries, a feeding tube placement and a tracheostomy). Some of my posts on this journey: “Fix It,” “Love and Machine,” and “Love Heals.”

I did not expect to take my child home on a ventilator needing the support of skilled nursing to care for him at home.

I did not expect that one child could change my life, show me how weak and how strong I really am and bring more joy and love than I could have ever imagined.

Practical tips and things to consider when planning to adopt a child with Down syndrome:

1. Be prepared. If you’re considering the adoption of a baby still in the womb, you will need to be prepared for anything because there are a lot of unknowns. Heart defects are common in children with Down syndrome and can often require surgical correction. Children with Down syndrome can also face a number of other medical issues including thyroid issues, feeding issues and vision issues.

2. Educate yourselves. Read and get connected. The National Association for Down Syndrome and The National Association for Child Development are great resources.

Look into your local Down Syndrome Guild — here’s a link to ours in Kansas City. Read books like the ones on this list. I’m currently reading “Down Syndrome Parenting 101.” So far, so good!

3. Insurance. Find out what coverage your insurance has, but also keep in mind that your child may qualify for Medicaid because of the Down syndrome diagnosis. A child with Down syndrome who is adopted domestically may also qualify for an adoption subsidy to help offset other costs related to their care.

4. Preparing for the future. A child with Down syndrome can achieve a great deal of independence, but it goes without saying that he or she will need extra support even into the adult years. This is another great reason to meet and talk with parents of older children and adults with Down syndrome. Think about who will care for your child if you and your spouse should pass away, possibly a family member, an older sibling or a close family friend. Here is a site with great advice on guardianship and another about estate planning.

5. Educating your child. You will need to look at all of the resources available to educate your child. Early Intervention programs can provide in-home training and speech, physical and occupational therapy. Once a child reaches age 3, those services are available through the local public school system. We were blessed that our children with special needs were able to attend an amazing public preschool where they received all of their special services. Your child will have an Individual Education Plan through the local school district.

If you choose not to utilize public school and opt for private school or home schooling, your child should still be able to be evaluated and receive special services through the school district, even if he or she is not attending full time.

6. Family and siblings. Our children with Down syndrome have been fully accepted into our family. Our children who were already in our home have been amazing. They have learned so much and have become stronger, better people because of the impact their siblings with special needs have had on their lives. We have been blessed with an incredibly supportive extended family, but there are times when you may have to educate and prepare your family for welcoming a child with Down syndrome.

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If this little bit of personal information has been helpful and you are interested in learning more about adopting a child with Down syndrome or any other special needs, please email me about our Special Needs Adoption Program, tracie@christianadoptionconsultants.com 

This post originally appeared on From the Heart.

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