daughter with down syndrome playing at waterpark

To the Red Haired Girl at the Splash Pad Who Asked About My Daughter With Down Syndrome

47k
47k
68

I saw you with your frizzy red pigtails, freckled face and soaking wet yellow dress. I saw you watching my daughter. I saw you sitting near her, not too close, but close enough to watch her expression as she concentrated on watching the buckets fill with water and then pour down. Most kids would be standing under that water. Mine likes to watch from a distance. I saw you smile at her. And then I saw you look up at me.

You walked to me, shivering in the air. And you smiled this beautiful, crooked smile with your front teeth missing. I smiled back. And you sat next to me and watched my daughter again. Here is where I brace myself as a mom.

My daughter has Down syndrome. She’s nonverbal and may be on the autism spectrum.  She doesn’t know how to relate to other kids, sometimes doesn’t mind just watching others. Some kids watch it and ignore it. Some kids ask questions.

What is wrong with her?

Why doesn’t she talk?

Why is she mean? (if she pushes somebody too close to her out of the way)

Why is she yelling?

As her family we are used to these behaviors. The kids she has gone to school with for the past few years know her quirks. But new children are rarely accepting of a child with special needs. Especially when she’s 9 and doesn’t speak.

So I braced myself when you looked up to me.

“Is that your daughter?” you asked. 

I said yes. 

“What is her name?” 

And with that reply you got off the bench and went back to sit by her.

“Hi!” you said brightly, plopping yourself on the cement right next to her. She looked at you, but instead of shrieking, she smiled back. You wrapped your arm around her and laughed as the water bucket poured down. She looked at your arm, and I stood up, expecting her to shriek and push you away. See, she generally doesn’t like being touched.

But my daughter like me sensed your beauty. Instead of yelling “no!” she did something amazing. She leaned in and hugged you back. And laughed as well. And I sat down again. You were too far away for me to hear your conversation. But I saw you talking to my girl. And not caring if she didn’t reply back. I saw you both laugh. I saw her touch your red hair and smile.

daughter with down syndrome playing at waterpark
My daughter at the splash pad

When your mom called you, you walked over to me wrapped up in a beautiful handmade quilt. I smiled again, as I was still speechless. Instead of me thanking you, you thanked me as your teeth chattered. “Your daughter was so much fun to play with! Have a great day!” you chimed as you started to run to your mom.

I’m sorry I couldn’t say thank you at that moment. But, you see, I rarely see friends with my daughter. You gave us the most beautiful gift that day. You gave us a day of making friends and laughing. For that I will always be grateful. And I hope I see your frizzy red pigtails again. This time I will make sure to thank you.

Follow this journey on My Life With Three.

The Mighty is asking the following: Share with us an unexpected act of kindness, big or small, that you’ve experienced or witnessed in an everyday place. Check out our Submit a Story page for more about our submission guidelines.


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.

47k
47k
68

RELATED VIDEOS

JOIN THE CONVERSATION

When We See Insults About Down Syndrome Online, What Should We Do?

223
223
2

Social media has great aspects. It allows parents like myself to find each other and connect. We can ask each other questions, brainstorm ideas and share resources. I love being able to find other parents online because I often can’t meet in person with other parents of children with special needs due to Jaycee’s care and busy schedules.

Jaycee is my sweet, 10-year-old daughter with Down syndrome. She is minimally verbal but has no trouble communicating in other methods. She has lived through several surgeries and multiple hospital admissions for a variety of health problems, some unrelated to her Down syndrome.

It is her I think of when I see the ugly side of social media. When I see an inappropriate joke about someone with Down syndrome posted, it disturbs me.

I am not naïve. I know there are people who don’t care about those with disabilities and have no remorse about joking about people like my daughter. But, I do try to shelter myself from it. I don’t seek out posts or stories to protest or rant about. I like to pretend my daughter is growing up in a world mostly supportive of her.

Recently, I came across some things on my Twitter feed that made me shake my head. I did not screenshot these tweets because I am not about publicly calling specific people out. So, I will describe what I saw. First, there’s a meme circulating of a person with Down syndrome working at a computer with the caption: Google: How to Uninstall Chromosomes.

The first time I saw the meme, I was confused. Who did this? Is this suppose to be funny? Truthfully, I didn’t see the humor in it. I didn’t like it, and I didn’t like that there was an audience for this sort of thing. I wonder where the picture of the person with Down syndrome came from and if that individual is aware of how it is being used.

I have since learned many inappropriate memes exist regarding those with Down syndrome. If you Google “Down syndrome memes,” you will see several negative and far more offensive ones quickly.

Then, there was the tweet of a man who said, “I have drank so much that I have #Downsyndrome.”

His tweet showed up in my feed because a Down syndrome advocate I follow had mistakenly retweeted it due to the #Downsyndrome.

That tweet gave me pause. Should I respond and get into a Twitter war with someone who might possibly think Down syndrome is an acquired condition? I have never called anyone out on social media before, should I start now?

I thought about writing to him one of the following responses:

Your mother must be proud. 

Thanks for insulting people with #Downsyndrome while you are intoxicated. Smart! 

My daughter with #Downsyndrome thinks you shouldn’t drink and tweet!

I didn’t do it. I let it go. I read his tweet while I was sitting near my daughter in the hospital battling another respiratory infection. I had bigger concerns at the time than educating that guy, and emotionally I was already drained.

What is a person like myself do?

How do you respond to those who throw insults at a people who sometimes aren’t able to defend themselves?

I know there are some who believe it doesn’t matter. These jokes don’t really hurt anyone. But, I can tell you people exist in real life with little respect for those with disabilities and special needs. Ask anyone you know who has a visible disability or a child with special needs. I am sure they can easily tell you a story of complete rudeness, unbelievable language and downright intolerance.

For that reason, it does matter. I don’t want these jokes made on social media to become the norm.

I wish I had good solutions to these problems, but I don’t. I will merely suggest the following: Read posts carefully before sharing or retweeting. Show kindness and respect to others. Behave in a way to make your momma proud.

The Mighty is asking the following: Describe a meme, image or sign you’ve seen shared online that struck a chord with you, for good or for bad. Check out our Submit a Story page for more about our submission guidelines.

223
223
2
TOPICS
JOIN THE CONVERSATION

Mom Helps Daughter With Down Syndrome Start Gluten-Free Bakery

16k
16k
15

In a photo provided by Elise Sampson, Carolyn Sampson prepares Reason to Bake cookies. Carolyn Sampson has always loved to bake.

So much so, in fact, that she now runs Reason to Bake, a gluten-free cookie startup in the mountains of North Carolina, along with her mother Elise.

To the Sampsons, the fact Carolyn has Down syndrome wasn’t a deterrent.

“In our hearts, we believed she was capable of learning a profession, not just an entry-level job,” Elise Sampson told The Mighty.

They just weren’t sure what that profession would be.

That is, until Carolyn, now 21, announced she wanted to be a baker.

In a photo provided by Elise Sampson, Carolyn Sampson and a helper prepare Reason to Bake cookies.

Elise and her daughter researched gluten-free baking, knowing many individuals with Down syndrome have gluten sensitivity, and then did a little poking around.

“We couldn’t find anything on the market that met our standards for taste and freshness,” Elise said. “It was a need that wasn’t being addressed in our area.”

And after a bit of soul-searching, mother and daughter decided to take the plunge.

“I literally had a series of dreams where God spoke to me about listening to what Carolyn was saying, and that we were going to build a business that would provide not only an opportunity for Carolyn, but for many like her,” Elise said.

So they secured the use of a local coffee shop’s kitchen after hours, set up shop at a farmer’s market and contacted a business advisor. Reason to Bake's Spicy Ginger cookies.

Just like that, Reason to Bake was born. Their cookies come in three popular flavors — spicy ginger, chocolate chip and oatmeal raisin — and are now sold at 13 retail locations in western North Carolina.

Carolyn and Elise have big plans for the company’s future. After celebrating the company’s three-year anniversary in August, they’ll launch a crowdfunding campaign in September. Funding is needed for new shipping-friendly packaging (designed by Clemson University as part of a senior project partnership) and for a new commercial convection oven. They also hope to open an e-commerce store soon.

The bakery has proved a transformative experience for Carolyn — who, according to her mom, has picked up interpersonal skills, a stronger work ethic and a sense of pride in the cookies — and she and her mom hope to extend that same opportunity to other young adults with disabilities.

“I would rather challenge Carolyn to [achieve] great feats, even if she doesn’t quite make it, than tell her she can’t do something,” Elise said. “She will still be farther ahead than if she did nothing.”

Reason to Bake offers a blog and email update form on its website.


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.

16k
16k
15
JOIN THE CONVERSATION

Mom of Boy With Down Syndrome Writes Note to Parent Who Didn't Invite Him to a Party

2k
2k
3

Jennifer Kiss-Engele is turning a heartbreaking moment of exclusion into a chance for education and advocacy.

When her son, who has Down syndrome, was the only child in his 22-person class to not be invited to a birthday party, Kiss-Engele wrote a now viral letter on Facebook to the parents of the birthday boy.

The letter, which has been shared nearly 2,000 times in a day, reads:

An open letter to the parent that thought it was OK to invite the entire class to their child’s birthday except for my son….sharing this because I think it’s a valuable lesson for all and I’m trying to educate & advocate more. <3

Hi there, 

I know we don’t know each other well but my son and your child are in the same class. I understand that your child recently delivered birthday invitations to the entire class except to [my son], who was not invited. I also understand that this was not an oversight on your part, that it was an intentional decision to not to include my son.

I want you to know that we don’t have an expectation of being invited to every birthday party. In fact, when [he] celebrated his birthday last year we only invited a few close friends as we wanted to keep it small, since it was over the Christmas break. But in your case, this is not the same reason. In fact, you have invited all 22 other children from the class except for my son. I know it’s not because he’s mean, you couldn’t meet a happier child. I know it’s not because he’s not fun, he has a great sense of humour and an infectious laugh. I know it’s not because your child and him don’t get along, he’s brought up your child’s name on several occasions. The only reason why you decided it was OK to not invite my son to your child’s birthday party is because he has Down Syndrome.

I am sorry that you are not informed, maybe scared, or uncertain about what it means to have Down Syndrome. I know if you knew more about Down Syndrome you wouldn’t have made this decision. I am not mad at you. Rather, I think this is an opportunity for you to get to know my son better. You see, having Down Syndrome doesn’t mean that you don’t want to have friends. It doesn’t mean that you don’t have feelings. It doesn’t mean you don’t like to go to birthday parties. People with Down Syndrome want the same things that you and I want. They want to have close relationships, they want to feel love, they want to contribute, they want to have meaningful lives, and they want to go to birthday parties. It may be more difficult at times to understand my child. But the laughter and love that you share doesn’t need interpretation.

I want you to know that I was also like you. I was scared, uncertain and misinformed about Down Syndrome before having my son. I was so worried that my other children wouldn’t be able to connect with him in the same way as other siblings do. But I was wrong. In fact, my children are closer than most other siblings are. Having a brother with Down Syndrome has helped shape them into compassionate individuals who know that just because you may be a little different that others, that it’s OK. They are not afraid to help when they see someone struggling. And they are not afraid to approach someone they might not fully understand. In return they have received so much love and joy from having their brother as their best friend.

Maybe you are struggling with the words to say to your child because your child did not want my son at their birthday party. Maybe you let your child decide that it was OK to single someone out. I know it can be difficult to teach our children about something we may not understand ourselves. I struggle with this as well. But this is a great opportunity and life lesson to have with your child. They will remember the time that their parent said to them, it’s not OK to leave someone out because of their disability, race, or gender. I know you want the same things for your child that I want for mine. As parents, we want our children to be liked, to have friends, and to not be left behind. And how we do this is by setting examples ourselves and encouraging them to make choices that they might not be old enough to fully comprehend. But they will look back one day with understanding and the knowledge that you have shared with them. I am certain, that with a little encouragement, your child can develop a true friendship with my son that will leave a permanent, positive impression on them for the rest of their life.

It’s only until this happened that I realized myself that [my son] hasn’t been invited to hardly anyone’s birthday party this past year. The kids are getting to that age where they often only invite a few children to their parties and he hasn’t made the cut. Other parents I know that have children with Down Syndrome have often started the school year by educating the class and I haven’t done that. He’s always just been [my son] to me and I haven’t felt the need to talk about Down Syndrome to his class until this moment. I realize now that I have let him down. I have let a year slip away where I could have done more to educate families. Perhaps then we wouldn’t be in this situation. I realize that it’s my obligation as his parent and advocate to educate people more about what it means to have Down Syndrome and how they are more like you than different. I now know how important it is to talk about it and it’s something I am committed to doing a better job of.

Please know that I am here to talk if you would like. I may be a mama bear but I am not a scary person. I recognize that we all make mistakes and at the end of the day, I think we both could have done better.

Thank you,

Jennifer

More than 600 people commented on the note, mostly in support of Kiss-Engele, some inviting her and her son over for a playdate.

One commenter wrote:

It is hard to understand how people can treat such wonderful kids this way. You are setting an amazing example, hold your head up high!! It is that other mother that loses out in the end, look at what she is missing!!

Another said:

You go girl! I’m sure the family did not intend to hurt you, they just need to be informed. They will come around and I’m sure will regret their decision to not include your beautiful son.

Last June, a Mighty contributor’s article went viral for the opposite reason. Tricia Klein, whose son is on the autism spectrum, wrote a thank you letter to a parent who included a special note in an invite to her son’s birthday party. The note reiterated that her son wanted Klein’s to attend, and if it would be too overwhelming, he could come a bit earlier.

“You wrote exactly what I needed to see that day and didn’t even know it,” Klein concluded.

What has your experience with inclusion in and out of the classroom been? Let us know in the comments below.


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.

2k
2k
3
JOIN THE CONVERSATION

How I Breastfed My Baby With Down Syndrome

2k
2k
24

The first thing I Googled after learning prenatally our daughter had screened positive for Down syndrome was whether or not she would be able to breastfeed. I scoured the internet for any hopeful stories I could find. Instead, I was met with article after article that listed the many challenges babies with Down syndrome face. Overall, the outlook for breastfeeding seemed bleak.

Still, even in the absence of great assurance, the desire to breastfeed remained strong in my heart.

My daughter Alisa’s birth story would be considered, to some, a rather unremarkable birth. Due to complications with the placenta, I had been hospitalized for the last eight weeks of my pregnancy. When it was time to deliver, my obstetrician induced me in hopes of a vaginal delivery. In the end, though, Alisa’s heart didn’t tolerate my contractions, and a C-section was needed. Upon delivery, we met a beautiful baby girl who was all wrapped up in her umbilical cord, which explained the dips in her heart rate during contractions.

In the recovery room, my family and I marveled at Alisa. This child we had long anticipated and prayed over was now in our arms, and she was beautiful. In my groggy postpartum state, the question now pounded in my mind with fresh intensity: Will she breastfeed? The nurse came to help me, and though we tried tirelessly, Alisa just would not latch well.

“Let’s take a break and try again later,” the nurse assured me. And as kind as that nurse was, I heard for the first time in her words a tone I would hear frequently in the coming days and weeks: doubt.

The first week of Alisa’s life was very intense. Alisa was whisked away to the NICU due to fluid retention in her lungs, which was a complication from the C-section. During our stay in the NICU, I became increasingly irritated with the phrase, “Well, with Down syndrome babies…” whenever medical staff would answer my questions.

Slowly but surely, I realized they were treating Alisa for her diagnosis of Down syndrome, even though that wasn’t the reason she had been admitted to the NICU. I also realized the greatest challenge Alisa would face in life was not her own limitations, but simply the low expectations of others.

So I advocated for my daughter. In the absence of any true medical reason that would prevent her from breastfeeding safely, I stubbornly insisted on breastfeeding her. I worked with a compassionate lactation consultant who encouraged me greatly, even as I wept.

I spoke with the head neonatologist, who in the end recognized their biases and apologized for the low expectations they had placed on my daughter. He confessed they had only been treating her through the lens of Down syndrome, and he then gave us the time and opportunities we needed to learn to breastfeed.

We left the hospital six days after Alisa was born, and together, Alisa and I were exclusively breastfeeding. She had no NG tube; she had no need for bottles. We worked closely with her pediatrician, who monitored her weight and gave me the encouragement I needed. “Keep doing what you’re doing,” he would say, and with the support of family and friends, we did just that.

Eight months later, Alisa is still exclusively breastfed and gaining weight like a champ. And Alisa Jane, my little overcomer, has showed me that perhaps we, meaning the outside world possessing many prejudices and doubts, are possibly the greatest obstacle children with Down syndrome will ever face.

To the internet, which is often filled with such bleak and disheartening news for parents, I would like to offer this story of hope. Babies with Down syndrome can breastfeed. I have met many other mothers who also breastfeed their babies with Down syndrome. Like us, some were able to do so right away, while others had to first address medical complications such as heart defects before they went on to successfully breastfeed their babies.

As I mentioned at the beginning, my first question when I learned of her diagnosis was whether or not my baby could breastfeed. They can do it; Alisa has taught me that.

The real question, though, is this: Will we let them?

Follow this journey on Chasing Genuine.

Imagine someone Googling how to help you cope with your (or a loved one’s) diagnosis. Write the article you’d want them to find. If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

2k
2k
24
JOIN THE CONVERSATION

To the Mom in the Waiting Room Who Apologized About My Son's Special Needs

9k
9k
7

To the other mom in the waiting room,

Our conversation started out naturally enough. We were both sitting in the waiting room at the pediatrician’s office for the Saturday morning clinic for children who are sick. You were there with your beautiful 20-month-old daughter who had a rash. I was there with my precious 10-month-old son who had a yucky-sounding cough. I’m sure both of us had things we would have rather been doing on a Saturday morning, but we were making the best of it.

Waiting rooms can often be eerily silent places as people are buried in their smartphones and magazines, or as they simply stare straight ahead, avoiding eye contact with another stranger. I was pleased that you responded well to my initiative to strike up a friendly conversation. We chatted back and forth about our children and made some general small talk as we each waited for our child’s name to be called…

But then a few simple phrases seemed to change everything.

I mentioned that our family was looking forward to celebrating my oldest child’s 7th birthday that weekend. You smiled and said, “Seven? Oh, I bet he loves to help with the baby!”

Now at this point, I had a choice to make. I could smile and move on, or I could be real about the different dynamics our family experiences in this area. I love to talk about my kids, and I love opportunities to help create awareness about Down syndrome, so I decided to be real.

Smiling back at you, I started to share, “Well, actually, my son has special needs…”

Before I could go further, you quickly interjected, “Oh! I’m sorry!”

I’m always a bit taken aback when people apologize to me concerning my child, but I continued on.

“It’s fine. He has Down syndrome, and…”

Once again, you cut me off with another sympathetic, “I’m sorry!”

This time I was a little more direct. “It’s nothing to be sorry about. We love him so much, and he has taught us so much! He’s just not at a place yet to be able to help with the baby.”

In response you smiled uncomfortably and busied yourself with your daughter. A moment later you picked up a pamphlet from the side table and started to flip through the pages. It was becoming increasingly clear our friendly conversation had come to an end.

Let me first say — I am not angry with you. I believe you had no ill-intentions, and you were not trying to offend in any way. I am not angry with you, but I am saddened by your response. As I told you, the fact that my son has Down syndrome is nothing to be sorry about. If only you would have allowed me to continue, I could have told you why.

The author's son wearing a plaid button-down shirt

I could have told you my little boy’s life is such a precious gift, especially considering that the doctors and nurses in the NICU didn’t expect him to survive. I cannot imagine my life without him today.

I could have told you what a little overcomer he is after facing numerous health complications, including open-heart surgery, and the fact that he is healthy and thriving today.

I could have told you what a champion he is — working so hard to reach various developmental milestones, and I could have shared with you the incredible celebration that has accompanied each one. I am so proud of him!

I could have told you about his contagious smile, his delightful laughter and his wholehearted affection. My son carries such joy.

I could have told you about his unique personality, and some of his favorite things that include Elmo, “The Wheels on the Bus” and stuffed animal monkeys.

And yes, I could have told you about the challenges we have faced, but I also could have told you that each one has carried with it an opportunity to learn, grow and discover what I believe is the heart of God in brand new ways.

I could have told you our journey may look different than some (then again, whose life journey ever looks the same?), and that it carries its own unique beauty. I would not be the person I am today if I had not had the privilege of walking this road.

I could have told you so much…

And hopefully your discomfort would have dissolved, and you would have been able to see that my son is not something to apologize for… he is someone of immense value — a good gift I will always treasure!

So, today, as I remember our short encounter, I bless you, and I pray you will have opportunities in the future to truly see and know the person behind the disability. I promise you, your life will be enriched!

Follow this journey on Reflections From Holland.

The Mighty is asking the following: What’s one phrase you wish people wouldn’t say about your (or a loved one’s) disability, disease or mental illness? Why? What should they say instead? Check out our Submit a Story page for more about our submission guidelines.


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.

9k
9k
7
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.