Mom Helps Daughter With Down Syndrome Start Gluten-Free Bakery

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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.

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

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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.

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How I Breastfed My Baby With Down Syndrome

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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.

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

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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.

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To the CNN Writer Who Referred to Down Syndrome as a 'Disease'

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Dear CNN writer Meera Senthilingam,

I understand how it might have happened. You might be busy or have a lot of deadlines. But today, a story written by you and posted on CNN.com referred to Down syndrome as a disease. Your job is to report facts. Here’s a fact: Down syndrome is not a disease.

My daughter, Willow, is not sick. We’re not in search of a cure. We aren’t looking to ease any symptoms. She simply has an extra chromosome. It’s part of who she is, not something she’s fighting.

The story you wrote actually talked about something that holds great promise for my daughter. It referred to a study involving green tea and how a compound found in it could improve memory and speech in individuals with Down syndrome. The idea behind the study is not to “cure” Down syndrome, but to help individuals with an extra chromosome to reach their fullest potential.

I admit, it was an easy mistake to make to refer to Down syndrome as a disease. That’s because the article also referenced real diseases like Alzheimer’s. I assume you just assumed Down syndrome fell under that category.

It doesn’t.

People might fear disease, but people should not fear Down syndrome. I ask you, does this look scary?

Jennifer Hines’s daughter, Willow.

I suppose I should mention I once was a journalist like you. I understand mistakes happen. I just wish this mistake didn’t hurt so much. And while your story does go on to define what Down syndrome is, your typo, whatever you want to call it, caused me to lose a bit of hope. Hope that our world is changing. Hope that the road ahead for my daughter won’t be as scary as I think.

Please know I forgive you. I’m not perfect, either. But my daughter? She is. Trust me. I wouldn’t change a single thing about her. And if you knew her, I think you’d agree.

God bless,

Willow’s Mom

Editor’s note: This story has been edited since publication.

Follow this journey on The Mighty Willow.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please 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.

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When My Daughter Learned to Advocate for Her Sister With Down Syndrome

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“Mom, why are those boys laughing at Ola?”

“Which boys?” I said, looking over my shoulder. I couldn’t see any boys.

“They’re gone already. She was just sitting there! I don’t like that!”

“OK, time to go,” I said, ushering her onto the ice and making my way to the stands.

I sat down with Ola and sent out this status update on Facebook.

“That heartbreaking moment when Poppy says, ‘Mom, why were those boys pointing and laughing at Ola? I don’t like that.’ Sigh. Of course, they were nowhere to be seen when I turned around.”

Immediately, I started getting responses from friends, some of whom have kids with special needs, saying things like, “That’s awful!” and “How horrible, sorry that happened to you guys.”

I walked back into the change room to help Poppy get her skates off, and without missing a beat, she brought it up again.

As we walked to the car, I knew I had to say something to her. I had to give her an explanation. I got the kids buckled, buckled myself in and then started the car.

“Mom, I’m just so mad. I’m mad at those boys.”

I turned off the engine and turned to face her. I had an hour to think about it, and this is what I said:

“Poppy, you know how you have Ola and friends like B and C, and J? (These are children at her school who all have special needs.) You’re lucky you have them. Having them in your life has made you and is making you a compassionate, caring, understanding and loving girl. I feel sorry for those little boys because they probably don’t have anyone in their life who has Down syndrome or another special need. They don’t know that laughing and pointing at someone because they look or sound different hurts both that person and the people who love them.”

I told her she was given a voice for a reason, and she was extra special because she is someone called an advocate. I told her advocates stand up for people who maybe can’t speak for themselves, and that advocates know people with special needs are just like everyone else and they can achieve great things.

I could see something in her face change. An advocate. I could see the wheels turning.

She went down a list of names in our family.

“Mom, are you an advocate? Is Dad? Uncle Bradley? Auntie Sarah? Nana? Grandpa?”

I replied yes. We all were, and I choked back the tears. I told her she was allowed to talk to the boys if she saw them again. She was allowed to tell them who Ola was, and if they were making fun of her again, she could tell them what they were doing was hurting her feelings and they should stop.

“Am I allowed to talk to them about it?”

“Yes, absolutely, as long as you’re kind and don’t yell,” I said.

I told her I loved her and was proud of her. She was content with her newfound title: an advocate.

Later that night, I talked to my husband, Mark, about what I said. And it dawned on me if Poppy is growing up with a sister with special needs and doesn’t know she is allowed to speak up on her behalf, then what are the chances other kids don’t know that speaking up and advocating is OK? I couldn’t believe I hadn’t mentioned it before. I didn’t even think about it. How could she not know? But why would she? Don’t they talk about this at school?

I couldn’t sleep that night. I knew I wanted to do something that could empower other kids, too.

I started scribbling down ideas and doodles. I wanted to keep it simple and gear it towards not just kids with Down syndrome but all kids. The kids with the special needs and the kids who love them. The kids who are advocating for their own needs, and the kids who are advocating and raising awareness for other kids around them. Kids with autism, kids with glasses, kids with dyslexia, kids with divorced parents, any kids, all kids.

I decided on a postcard with the message and a pin that can be given to a child who is an Awesome Advocate! A pin that makes them feel proud and special and to thank them for being an advocate.

I contacted some of my creative, crafty and awesome friends and shared the details of my idea to them in emails and text messages. That’s when the Awesome Advocates started coming to life.

The Awesome Advocates was originally shared with friends and Facebook on March 21, 2014, to celebrate World Down Syndrome Day.

What started out as a tearful conversation with my 6-year-old has turned into a movement that I hope you will share and take part in. Let’s help empower our kids! Let’s teach them and help them celebrate their differences.

The message is simple: Our differences are what make make us awesome!

For more information on The Awesome Advocates, visit their Facebook or Instagram pages and use #theawesomeadvocates.

Tell us about a stranger’s comment about your (or a loved one’s) disability, disease or mental illness that has stuck with you for one reason or another. Why has it remained significant to you? If you’d like to participate, please 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.

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