To the Young Girl Who Mocked My Son With Down Syndrome

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“Can I help you with something?”

I wouldn’t have said anything, but I spotted your friend making a face before you whipped around to give my son a mocking stare for a second time. The tone of my voice was far more reasoned than if you had not been a child. Had you not been a child you may have heard the anger in my heart. But you were only about 12, if that. It really was all I could do to smile, but I didn’t want to frighten you. I wanted to educate you.

Pretty sure I failed.

You nervously shook your head — your eyes wide open — realizing you’d been caught out.

“Is there a reason why you’re staring?” I asked. Same tone. Same smile.

Same response. Then you turned back around and finished your lunch, the table quieter around you now. No more faces, no more words, no questions, no head shaking, nothing. Maybe it surprised you that another demographic who’s perennially jeered was standing up to you. This redheaded mom and her boy with Down syndrome. No honey. We don’t just take it, we address it. So sorry to burst your bully bubble.

I looked down at Rukai. My sweet, innocent little boy just having something to eat on a sunny summer afternoon. And you had to go and bring in those clouds. I look at him and see only a child; one who is loved by everyone who has the fortune to spend any time with him. A child with quirks, with needs, with emotions (yes, some being anger and frustration). With hopes and disappointments just like any other kid. But you, and so many others like you, choose only to see (worse, to define him with) a genetic condition that only makes him learn a bit slower.

This happened a few weeks ago but is still very much on my mind today. I wonder where you go to school. I wonder who your classmates are. Do you have any kids with special needs in your class? In your school? Anywhere you’ve ever been? Your reaction tells me not many, if at all. What a shame. What a loss. What a missed opportunity.

And here you’ve been on earth a fair few years. Here you should have had many a chance — like Rukai’s preschool friends have had — to interact with a child who learns differently, who moves differently, who acts differently. To engage with him and only know him as Rukai. Because he is Rukai. He is not someone for people to toy with. He is a human being and he has a name. He is Rukai.

I wish you would have replied when I asked you those questions, I really do. I wish you would have actually wanted to know, to understand. But your fear and your reluctance told me otherwise and really made me sad. Because that fear and reluctance would not have existed had you not been mocking him.

I know this because there have been so many other kids your age who’ve approached him, waved and smiled at him, fist-bumped and high-fived with him — you name it. Those kids get it. Because those kids aren’t being ripped off by society — those kids are lucky to have inclusion as standard in their schools, in their clubs, in their neighborhoods, maybe even in their families. They know kids like Rukai because they have been allowed to know kids like Rukai.

And although many in this very strange and skewed world would look at us and feel pity — they of the downward-angled smiles and furrowed brows, which say more than their words could possibly define — it is you for whom I feel pity. You are being denied by society the most beautiful of freedoms, which is to live and let live. Get to know one another. Share ideas. Share joy. Share love. Grow.

You whipped your head around to stare, and as I was reacting, I thought of all those who haven’t. The restaurant server who brought Rukai an early bowl of fries before a late meal because she didn’t want him to be hungry much longer. The retired doctor who stopped for a high-five as we were checking out of a hotel then offered to return our luggage cart so we could be on our way quicker. The young girl your age who stopped to play with him in the sand pit, returning later to introduce him to her friends. The dozens of people in dozens of other restaurants on dozens of other days saying hello, smiling, enjoying his energy, enjoying his very existence.

I chose to remember them.

I once thought reactions like yours would be in the majority. Ah, but they aren’t. And this gives me hope that maybe — just maybe — all the advocacy out in the world is starting to chip away. It’s like digging a tunnel with a teaspoon, but we keep on digging. With bloodied knuckles and throats ragged from the constant dust, we keep on digging.

I am so sorry you haven’t been given what those other folks have. I hope as you get older you don’t continue to be stripped of that opportunity and instead you are allowed to live in the world as it is, instead of the world as it is imagined. Because that ableist, virtual reality where people with disabilities are locked away as something to hide, as someone to fear, is not truth.

We don’t hide around here. And we are certainly not afraid.

I hope that one day inclusion becomes more than a catch phrase.

I hope that one day disabled people no longer have to scratch and claw for equal opportunities to access education. To access all of life, not merely what they are allowed to access by those who choose to live in darkness and pretend we are not a society of mixed ability on every level.

I hope that one day you tell your friend to stop pulling faces. Tell him that we are all different and that bullying is evidence of a dark heart. I hope that you don’t whip your head around to stare but you turn around to smile.

And when someone asks if they can help you with something, I hope you say, “Yes, educate me.”


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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A Letter to Alex Jones, From a Mother of a Son With Down Syndrome

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Dear Mr. Jones,

I opened my Facebook account and saw something in my feed that shocked me. Something so heinous that I found it almost unbelievable. It was your comment about Hillary Clinton. 

According to Media Matters, you said, “She looks like she’s got, I’m sorry, Down syndrome whenever she’s out there with the balloons falling, like she’s a 3-year old with a lobotomy,”

Really?

Wow. I understand during campaigns individuals can be enthusiastic about the candidates they’re supporting. But I’d like to respectfully ask that you take just a second to consider not only the words that came out of your mouth, but the meaning they took on because of the context in which you said them.

When I read your comment, I was amazed at how ignorant and dismissive it sounded. You have no idea what people with Down syndrome have to do to achieve. You have no concept of how much work a person with Down syndrome and their families have to do to just to ensure that people with Down syndrome are included in schools, workplaces and on community teams. Your comment made it sound like people with Down syndrome are not valued members of our communities. With one comment, you made it sound like Down syndrome was something so unattractive and something to be sorry about.

Mr. Jones, you got it completely wrong.

I’m the mother of a 5-year old boy, Evan, who has Down syndrome. When Evan was born, it was clear society was conditioned to think it was something to be sorry about. It’s not, and you need to know that.

My son with Down syndrome has an incredible work ethic. What I’ve learned in my amazing five years with him is that it takes him a lot more effort to do many of the things that come naturally to his typical peers. He is a hard-working little boy who sits through hours of therapy each week that have helped him jump, run, draw, write, cut, speak, learn math concepts and know his letters and the sounds they make.

My son with Down syndrome is determined to succeed. He is little boy who will attempt new skills a dozen times as he is learning them, until he can do them easily. He doesn’t give up just because something is too difficult.

My son with Down syndrome is an advocate. He visited his senators and representatives to advocate for people with Down syndrome. After one of our visits, our representative joined the Congressional Taskforce on Down Syndrome.

My son with Down syndrome is empathetic. When Evan sees people who are upset, he is the first to offer a hug and support. When people are celebrating, he celebrates with them.

My son with Down syndrome is also not many things. He is not hateful or vengeful. He doesn’t play games. He doesn’t intentionally act in ways that are hurtful to others.

When you look at all these characteristics that my son has and those he does not have, it all adds up to a truly good person — someone that any American citizen and presidential candidate should be glad to emulate.

Mr. Jones, I understand you’re enthusiastic about the candidate you’re supporting, but what you did was the basest thing a human could do. You mocked a whole group of people — a group of Americans and citizens about whom you know nothing — because of their disability. I hope you’ll take a moment to read the many social media comments, stories and open letters that are undoubtedly crossing your desk and hope at some point it hits you. You are a citizen of the U.S., where all people, regardless of ability, are considered equal, and your commentary is unacceptable coming from another U.S. citizen.

I encourage you to visit the websites of the National Down Syndrome Congress and the National Down Syndrome Society to educate yourself about the people you insulted, and I hope that you issue a sincere, heartfelt apology.

Regards,

Julie M Gerhart-Rothholz


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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The 3 Things I Needed to Hear After My Daughter With Down Syndrome Was Born

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When we had our daughter, Ava, nine years ago, we didn’t know she was going to have Down syndrome. We even chose not to know if we were having a boy or a girl. The fact that we were fortunate enough to create life was an incredible gift in itself.

And what a gift she has been. For those who don’t know Ava, she can be quite a feisty little thing. So it was no surprise when she decided to flip over in my belly a week before she was born. A week later, I went into labor and doctors realized she was a breach baby, so I had to have an emergency C-section.

It was quite hilarious now that I look back, since we had our other daughter, Karishma, with us and had to quickly find someone to take care of our then 18-month-old while we were at the hospital.

Oh, and there were no beds available, so all this happening in an office at the hospital!

I went into the operating room while my husband, Doug, handled Karishma. Thanks to our good friend, Tim Weaver, who came and got her.

As they prepped me, I kept asking for Doug. He finally arrived, and minutes later a baby was born. Doug said, “Looks like we have an Ava,” and I asked if she was OK. I saw her for a second before they took me to the recovery room.

The next thing I remember was Doug meeting me at the recovery room and holding my hand. I asked about Ava, and with a worried look, he said, “They think she has Down syndrome.” I asked if he is OK, and he said, “I am glad she is here.” These words made me love Doug more than ever. I knew we were going to be just fine, and I, too, was glad to have her here with us.

As the day went by, the doctors told us about the risks Ava could face. Plus, she had pulmonary hypertension, which they said could be a problem with her heart. They decided to transfer her to the Children’s Hospital of Philadelphia (CHOP).

As we prepared for that, my doctor told me I could have gotten a test to find out if she had Down syndrome before she was born, as if I would have done anything differently. Others told me “maybe they will find a cure,” and you shouldn’t tell anyone until you have the final genetic test results. The most popular one, “God doesn’t give you more than you can handle.” And on and on it went.

Then, just as the stress was getting to us, our friends, Julie and Bob, came to visit us at the hospital with a beautiful plant and an enormous smile and said, “Congratulations! She is beautiful!” Julie held Ava and told us how amazing she is and that she is going to be just fine. These words were exactly what we needed, and I’m still thankful for these two friends who welcomed our child just as everyone else was welcoming their child in the hospital that night. We were happy to have our little Ava regardless of the chaotic negative noise around us.

A day after she was born, Ava was transferred to CHOP. Doctors thought having her at CHOP would be safer, since they didn’t have the capabilities to help her if she did have a heart defect. During our terrifying ride to CHOP that afternoon, I remember praying that she would be OK and that I didn’t care if she had Down syndrome. I just wanted to hold her in my arms. When we got to the NICU, she was in the arms of an amazing nurse. This nurse had the most calming smile as she looked up at us and handed Ava to me.

Fortunately, Ava did not have a heart defect. Then, they thought she might have spinal bifida because of a dimple on her bottom. Turned out, it was just that — a dimple. We let out two sighs of relief and said many prayers thanking God for this blessing.

When she was transferred to the ICU, she had yet another great nurse who was always laughing and joking around with us and Ava. As we left the hospital two weeks after she was born, we had a clean bill of health. We had never been happier. Now, we get to just enjoy her. I remember just staring at her with awe. She looked at me with a look she still has that says, “Life is good and everything will be just fine.”

As we packed up everything, a nurse stopped by to say goodbye. He told us it has been nice taking care of her and said, “Enjoy her. She is a keeper.”

Now, when I’m having a rough day with the school district or when a random person says life must be difficult for us, I think of the three things I needed to hear when we were at the hospital:

1. “I am glad she is here.”
2. “Congratulations! She is beautiful!
3. “Enjoy her. She is a keeper.”

These are the words that matter, and life with Ava matters more than I ever imagined.

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The Moments I Knew It Would Be OK After the Birth of My Son With Down Syndrome

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We found out at birth that our son Alex has Down syndrome. Though our neonatologist delivered the news beautifully, he arrived after an emergency c-section which left us raw. That night we had a lot to wrap our minds around, but after I stabilized, the staff rolled me down to see our son, and at that moment, I wondered if maybe it would be OK.

The next morning my husband showed up with a smile, an encouraging word, and a stack of books, and I thought maybe it would be OK.

I arrived home from the hospital to a finished nursery, but no baby;  I wondered if it would be OK.

Our baby got discharged from the hospital; I thought maybe it would be OK.

I struggled mightily with pumping milk and feeding him; I wondered if it would be OK.

At 6 weeks old he latched on and nursed; I thought maybe it would be OK.

He never really crawled; I wondered if it would be OK.

He walked at 19 months; I thought maybe it would be OK.

He slowly learned words and signs; I thought maybe it would be OK.

He started preschool and regressed; I wondered if it would be OK.

It continued on and on, and somehow the wondering faded and the maybes grew into confident yeses.

Alex is 14 now, and I don’t really wonder any more if it will be OK. Somewhere along the road, I have learned that sometimes we veer off the path we need to stick to, but we always find our way back. My confidence is in our ability to navigate the rough waters, though we still don’t always avoid them.  Even when things aren’t OK right now, they really are OK, and they will be OK.


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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George Augstell, Man With Down Syndrome, Opens Uncle Bill’s Coffee Stop

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George Augstell mans the counter at Uncle Bill's Coffee Stop. When William B. Gee Sr., died of cancer in 2013 at age 47, his nephew wanted to honor his memory.

George Augstell, 28, who has Down syndrome, decided to combine the legacy of his uncle with his own lifelong dream of opening a coffee shop, stemming from volunteer work in food service and a love for meeting new people.

And so Uncle Bill’s Coffee Stop was born. Located in the lobby of the Golisano Center for Community Health in Niagara Falls, New York, the coffee stop opened recently with Augstell as owner and operator.

A partnership between Niagara Falls Memorial Medical Center and Rivershore Inc., the coffee stop got its start when Augstell, a longtime Memorial volunteer, told the hospital’s CEO, Joseph Ruffalo, about his idea.

Ruffalo was all in, telling Buffalo News George’s business plan “made all the sense in the world” for the Golisano facility, which offers services for adults with special needs.

And now, Augstell and a family friend who was hired as his employee serve snacks, pastries, soup, and, of course, coffee to Golisano employees and visitors, clad in polo shirts bearing the Uncle Bill’s logo.

Augstell, who’s gotten attention from several media outlets, makes a point of calling Uncle Bill’s a coffee stop, not a coffee shop. He wants people to stop in for a visit — and that they have.

Uncle Bill’s was also recently recognized by a local senator.

Susan Goodman, Governmental Affairs Director at the National Down Syndrome Congress, said Augstell is showing others the possibilities for those with Down syndrome.

“Augstell is an example of what we want for all people with Down syndrome — the opportunity to live a life he chooses with the appropriate support — including real employment on a meaningful job with a chance to achieve the American dream,” Goodman told The Mighty.

And as a now successful business owner, Augstell had a few words of wisdom for others with Down syndrome.

“Be yourself and to not be afraid of failure or anything else,” Augstell told The Mighty. “Also do not be afraid to pursue your dreams and never give up. I think it’s important in life to have a good job that you love.”

At that, Augstell has succeeded.


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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When a Woman Said ‘At Least You Can’t Tell’ My Son Has Down Syndrome

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We’ve all experienced the awkward silence that occurs when somebody injects something ridiculously inappropriate into the conversation. But when you have a child with Down syndrome, “word vomit” takes on a whole new meaning. It puts people on the spot. Nobody has ever rehearsed their response to finding out a baby or child has Down syndrome. Some people don’t even know what Down syndrome is! They might think they do. They might be able to pick someone with Down syndrome out of a crowd. But more often than not, they know just enough to have the confidence to blurt out something totally inappropriate — and leave feeling proud of it. Words of comfort coming from well-intended individuals can leave you speechless, among several other things, but comforted usually doesn’t make the list.

I feel as though I’ve heard it all, but I would be naive to believe that. After all, my son Gavin is only 18 months; we have a lifetime of foot-in-the-mouth incidents to experience. “I’m so sorry.” “That must suck!” “At least he will always be ‘young.’” … That’s just to name a few.

There was a comment made months back that has always stayed with me for a reason I can’t explain. “Oh, I never would have guessed. At least you can’t tell.” At least you can’t tell… I was left repeating that to myself several times. Now, let me start off by saying that, no, I cannot tell. When I look at Gavin, all I see is Gavin. I see my son, and that’s it. Does that mean I think he doesn’t possess any physical traits of Down syndrome? No. In fact, I know he does. It’s why the doctor became suspicious of it in the hospital, and why strangers are able to know his diagnosis without me saying a word.

The author's son and daughter at the park

But why do I not want people to be able to tell? Why is that my saving grace? It is like she said to me, “Oh, never mind all the things he has overcome. Never mind all the things he has accomplished. Never mind all the hearts he has touched. That would be a horrible thing to be identified by, so thank God you can’t tell.” Or did she mean, “Oh, people with Down syndrome do not meet mine, nor the world’s, beauty standards. Their value is therefore decreased. These are things that make someone socially acceptable. I do not want him to be robbed of those things, therefore, thank God you can’t tell.” Do I think this is how she intended her remark to be taken? Of course it isn’t! But it’s how I heard it nonetheless.

Gavin will grow into a man. He will grow into a man with Down syndrome — a man who looks like he has Down syndrome. And when that day comes, will I jump out of bed and exclaim, “Oh no! Now you can tell!”? Definitely not. I don’t exactly know why she said this or what her point was. I love my child with Down syndrome. I do not love him despite his Down syndrome. If your child was born with blonde hair, but you were really expecting a child with brown hair, would you walk around hoping nobody could tell? Would you think, “Maybe if I don’t discuss it, nobody will know.” No, you wouldn’t. Because that is silly. You thought your child would have brown hair, but they don’t. They have blonde hair, and that is perfectly, beautifully, blissfully OK. I thought my child would have 46 chromosomes, but he doesn’t. He has 47, and that is OK.

The author's son wearing a blue shirt

My child is so much more than his extra chromosome, whether you can “tell” or not. He is a fighter, a survivor of cancer, a hard worker. He has more determination than many adults I have met. He has a beautiful smile, an infectious giggle, and his hugs alone can mend a broken heart. And I hope you can tell.

Follow this journey on Mothering When Life Happens.


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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