Little girl with Down syndrome blowing dandelion seeds to the wind.

23 Quotes for Parents of Children With Down Syndrome

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We believe we do not travel through these lives of ours alone. We believe that community is an essential part of our journey and that, as parents, friends, and supporters of individuals with Down syndrome, when we’re traveling through tough or uncertain times, we need to lean on each other for hope, uplift, love, and a little laughter.

So we reached out to our community for some help, asking parents what quotes inspire them or support them through challenging times. In the spirit of generosity and togetherness, they pitched in. Here are the quotes that cheer them on when they most need it:

1. “Some days are better. Some are worse. Look for the blessing instead of the curse. Be positive, stay strong, and get enough rest. You can’t do it all, but you can do your best.” — Doe Zantamata (via Karen Prewitt)

2. “Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, “I will try again tomorrow.” — Mary Anne Radmacher (via Alexa)

3. “I’d choose you in a hundred lifetimes; in a hundred worlds, in any version of reality, I’d find you and I’d choose you.” — Kiersten White (via Kelly Josh Caskey)

4. “I wouldn’t change you for the world, but I would change the world for you.” — Unknown (via Micky Pecchia)

5. “We teach our children courage simply by showing up as we are, trusting our voices, and advocating for what we and those we love need. Don’t be afraid to stand in your power.” — Brittany’s Baskets of Hope

6. “One of the secrets in life is to make stepping stones out of stumbling blocks.” — Jack Penn (via Ryan Lucas)

7. “Remember: you are a wonderful mom!” — anonymous friend (via Laurie Hinson Noyes)

8. “In the end, I am the only one who can give my children a happy mother who loves life.” — Janene Wolsey Baadsgaard (via JD)

9. “You cannot swim for new horizons until you have courage to lose sight of the shore.”
— William Faulkner (via Jesse)

10. “One of the great things that any community can do is not teach tolerance, but live tolerance, not talk respect, but live inclusivity.” — Michael Pritchard (via Deepa)

11. “But listen to me; for one moment, quit being sad. Hear blessings dropping their blossoms around you.” — Rumi (via Ashley)

12. The most compassionate people set boundaries: listen to your gut — trust yourself — and remember that the most powerful words we can say are “yes” and “no.” — Brittany’s Baskets of Hope

13. “Believe in yourself as a parent. No one knows your child better than you. You have been there since their first breath. There is no better advocate for their needs.” — Unknown (via Liz)

14. “Somewhere along the line we stopped trying to fix the child that we had expected and started to enjoy the child that was.” — Meg Blomfield (via Brittany’s Baskets of Hope)

15. “Turn your fears into excitement and imagine: what’s possible?” — Brittany’s Baskets of Hope

16. “Remember that we need to expect and accept. I try to keep that in mind with Henry as much as I can. I accept him and the struggles he (or any child, really) may face along the way, but I also expect things from him. I expect him to do many wonderful things, but I accept that it will be at his own pace.” — The Wells Family

17. “You don’t know how strong you are until being strong is the only choice you have.” — Bob Marley (via BerkLee’s mom)

18. “Friends, Down syndrome is only ever a pro.” — Heather Avis (via Amy)

19. “We are more alike, my friends, than we are unalike.” — Maya Angelou (via Marianick)

20. “Remember, always, that you are enough. You are exactly the parent you need to be, the one whose destiny matched perfectly with your child’s. Be patient with yourself. Be compassionate. In fact, it’s when you’re trying your hardest and you’ve gone all in but you’re face down on the floor that you most deserve your own compassion.” — Brittany’s Baskets of Hope

21. From Chris Burke, who happens to have Down syndrome: “Having Down syndrome is like being born normal. I am just like you and you are just like me. We are all born in different ways, that is the way I can describe it. I have a normal life.” (via Karen Prewitt)

22. “Do not forget: this is a collective journey. Don’t be afraid to ask for help and to show your children that strong people support others and accept support. We don’t have to do it alone.” — Brittany’s Baskets of Hope

23. “I want everyone to know that people with Down syndrome can do anything — really, really anything.” — Brittany Schiavone, founder of Brittany’s Baskets of Hope

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How My Daughter With Down Syndrome Crushes 'That Look'

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Today I’m thankful my daughter, Pip, teaches me to always be kind to others, even if I’m in a right-snarly-mood and want to teach someone a lesson. Yesterday, we had one of Pip’s (what feels like bazillionth) specialist’s appointments.

In a waiting room, no matter what, Pip always seems to draw attention. Mostly, people smile or engage in small talk which lights her up. But every once in awhile, I get “that look,” when people realize Pip has Down syndrome.

It’s a look I’ve come to recognize and if I let it, it has the power to make me want to cry, yell, shake and scream. It’s a look that feels as sheer pity with a sympathy smile added on top. It’s a look that truly makes me cringe and want to get on a soap box to preach my daughter’s worth. In the waiting room, a lady gave my daughter “that look.”

But this time, instead of saying anything, I let my daughter lead the way.

The lady watched as Pip and I giggled up a storm. She watched as Pip said, “hi” to everyone who entered the room. She watched as Pip helped a baby when he fell and held the hand of a nurse she adores. She watched as Pip asked for music and then danced in her chair, making everyone instantly smile. And she watched as my daughter signed and said, “Love you Mom” over and over. And then when they called our name to be finally seen, I took off the imaginary sign I felt I was wearing around my neck that read, “Do not pity my life.” I turned to the lady with the biggest smile, showing my upper gum, and proudly grabbed my daughter’s hand as walked away.

#DownsyndromePROUD

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Mikayla Holmgren, Woman With Down Syndrome, to Compete for Miss Minnesota

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Mikayla Holmgren, 22, is the first person with Down syndrome to compete for the title of Miss Minnesota and Miss USA.

Read the full version of Mikayla Holmgren, Woman With Down Syndrome, to Compete for Miss Minnesota.

Read the full transcript:

This 22-Year-Old With Down Syndrome Wants to Be the Next Miss USA.

Mikayla Holmgren is a dancer and student at Bethel University.

Holmgren has educated Minnesota’s House and Senate about Down Syndrome.

Now she’s competing to be the next Miss Minnesota!

“I applied to the Miss Minnesota USA Pageant not knowing if I would be accepted. And, that is all I want…to be accepted,” -Holmgren

Holmgren set up a GoFundMe to help her raise the $4,000 she needs for the competition.

Holmgreen will be the first person with Down syndrome to compete for the title of Miss Minnesota and Miss USA. (Source: KARE)

The Miss Minnesota competition, the prequel to Miss USA, isn’t Holmgren’s first pageant.

In 2015, Holmgren won Minnesota’s Junior Miss Amazing pageant.

“I want to do this. My mom is so freaked out but I want to do this.” Holmgreen, via KARE

Holmgren is currently preparing for the November competition, which features three segments – evening wear, swimsuit, and an interview.

“I want the world to know that Down syndrome does not define me. With your help, I can help break through walls.”

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To the T-Ball League That Didn't Let My Son With Down Syndrome Play

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I emailed our local Little League organization back in the winter to inquire about both of my older kiddos enrolling in their T-ball program. I did mention in the email my oldest son, Jake, who is 5, has a diagnosis of Down syndrome. I mentioned it not as a question to his eligibility to attend the program, but to open a discussion on how best to help him thrive in the program. They responded by telling me they have not had great experiences in the past with children with disabilities, and I should pursue another program for him — a response which completely took me by surprise.

I wrote them back explaining my position and identifying why I was disappointed in their decision. They have not contacted me. I am sharing the letter with the hope that as a society we can start holding organizations accountable to more. To equal opportunity. To pursuing inclusive environments. To the ideology that every child is valuable and important. This, dear friends, is a battle I’m willing to pick, this is a hill I’m willing to die on.

To the organizers of Centennial Little League,

As I sit here and write this, even a month after receiving your email regarding my son’s participation in your T-ball program, I continue to be profoundly disappointed in your interaction with me. I will not be registering any of my four children in Centennial Little League, but I felt it important to share with you my thoughts on this experience. Perhaps your life has not been touched by disability in the same way that ours has, and so I do not want to assume you would think through things in the same manner as we do.

First, I wanted to share with you our vision for our son, and the lens through which we try and make the best decisions possible for him.

You should know as parents of a child with a disability growing up in this generation, we are seeking to provide our child with the most inclusive lifestyle possible. Jake is a vivacious, fun-loving, energetic 5-year-old with an amazing personality and the ability to draw people to himself. He is fully included, with supports, in a mainstream Kindergarten class in our local school. He plays soccer in our community soccer club, and they have been phenomenal at adjusting to suit his level when needed, but have also understood the importance of community sports and relationships. In the past, he has been enrolled in gymnastics, swimming, summer camps and the list goes on. All of these activities listed have been in the community, alongside his brothers or friends, and in the context of other typical children his age.

We firmly believe — and research would back up our stance — that the inclusion of children with disabilities in community settings not only benefits the child with the disability, but also provides numerous benefits for all children with whom the child interacts. Lessons on acceptance, respect, diversity, kindness, friendship, and celebrating differences are crucial. Promoting these life lessons in everyday encounters is vital to the health and wellness of every child, typical or not. I am trying to raise my children to understand and recognize we treat all people as equal, regardless of race, gender, or disability; and to do otherwise is discrimination. Not acceptable in any way, shape, or form.

It is with this ideology in mind you can imagine my discouragement when I received your email and realized you would not be willing to register my child for your program. We are disappointed in your decision, and in your organization’s position on my son, and by proxy, other children with disabilities.

Whatever the reasoning was behind your decision, you need to know it is very disconcerting. I am quite certain, especially after reading the by-laws of your organization, that you would not discourage entrance into your program based on gender or race. It confuses me, then, why you would deny my child the opportunity to play in your organization based on disability. On top of that, you made the decision without having ever met, talked to, or interacted with my child.

I also wanted to point out some key phrases from your very own Centennial Little League by-laws for your consideration.

Under the description of the T-ball program, it states the following as goals, “Young players are introduced to the game of baseball. They learn, develop and practice fundamental baseball skills at an early age to receive maximum enjoyment from the experience. Emphasis is placed on participation and enjoying their first baseball experience.”  Your Vision Statement states, “Centennial Little League is devoted to providing opportunities for boys and girls alike by establishing an ongoing foundation of support for all athletes to reach their full potential.”  Your eligibility section states that, “Any person sincerely interested in active participation in the league may apply to become a member.”

All of these statements from your own by-laws make it seem like Centennial Little League would be an organization committed to providing a great experience for my children. If my ultimate goal had been to provide an experience for my son where he was playing alongside other peers with disabilities, I would have looked into a different program to begin with. But to my husband and I, the ultimate goal was participation and enjoyment of sport, and the ability to do this in the context of being able to play alongside his siblings and friends.

I end this letter not as an angry parent, but rather as one who is trying to be the best advocate possible. I sincerely hope this letter gives you pause, calls you to re-evaluate your decision as it pertains to many families hoping to foster a love for the game of baseball in their children, and causes you to rethink your stance regarding similar situations in the future.

Sincerely,
Karyn

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My Son With Down Syndrome Does Not Fit Your Stereotype

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I have a son with Down syndrome, and I have a confession to make: the kindness of strangers really annoys me sometimes.

Don’t get me wrong, I’ve heard horror stories from parents who’ve endured intolerance, rudeness, even downright cruelty directed at their children. I’m grateful I haven’t had to deal with that so far. What I have encountered, more times than I can count, are well-meaning strangers who stare at Cooper with sympathetic eyes, then turn to me and say things like:

“My neighbor has a little Down’s boy. They’re such angels, aren’t they?”

“People with special needs are special gifts from God.”

“I love children with Down Syndrome. They’re like gentle lambs.”

Of course, I’ll smile and nod and thank them. But it takes all my will to keep my eyes from rolling and my mouth from spitting out exactly what I’m thinking. Which is usually something like this:

“Angel? Ha! Hell raiser would be more like it.”

“Aren’t we all ‘special gifts from God’ if you believe that sort of thing?”

“My son is not a gentle lamb. He is a warrior. You should see him body slam his big brother during a crib match.”

I know these people have good intentions. But their words remind me of a very painful reality — for the rest of his life, many people who meet Cooper might size him up in an instant, filing him neatly under the “special” label and not bothering to look much further. Which is a big loss for both sides. Raising a kid like Cooper feels like walking an eternal tightrope. I want to believe he’s just like any other kid — except he’s not. I say he doesn’t have “special needs,” but let’s face it, my older son didn’t require occupational, physical and speech therapy from the moment he was 6 weeks old. I don’t want Down syndrome to define him — except it does, in many ways. And why should that be a bad thing?

I just want people to understand there are many other things that make Cooper special besides having a disability. He can pick up a break-dancing routine in seconds. He loves learning new tricks to make people laugh. His favorite book is “Dinosaur Roar” and he knows when to roar, squeak and curl his hands into little claws when we’re reading it. He plays the bongos ferociously, ending every song by throwing his hands up in the air with a dramatic flourish. He worships his big brother, adores his Daddy, but reserves his biggest hugs, kisses and cuddles for Mommy. And like all 2-year-olds, he can be a real jerk sometimes.

In other words, Cooper has his own personality, with his own unique strengths, weaknesses and flaws, just like the rest of us.

So, well meaning strangers, please stop making assumptions about the kind of person he is based on other people you know with Down syndrome. It’s inaccurate and lazy to reduce this entire population to one mild-mannered, happy-go-lucky, halo-wearing mass. And if you go this route, you could be missing out on getting to know some really great (or not so great) people.

So the next time you meet a child with a disability — or an adult for that matter — treat them like anyone else. Get to know them. Engage. Learn a little bit about them before forming your conclusion about what kind of person they are. You might be surprised at what you find.

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A Future Without Down Syndrome?

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A few months ago, I corresponded with the father of a young woman who has Down syndrome. His daughter is the co-owner of a successful small business. In his message to me, he made the statement that the future is looking bright for his daughter, and it will only be brighter for my son who also has Down syndrome. Indeed, great strides have been made. I was very encouraged. But since then, I have begun to wonder if he was right about that.

Did you now it is becoming easier for things like Down syndrome to be detected (with near certainty) through non-invasive prenatal testing? Did you know the majority of children who are diagnosed with Down syndrome will be aborted (internationally speaking)? Did you know that this type of selective abortion has virtually eliminated babies born with Down syndrome in some countries?

Did you know it may be possible to genetically edit babies who are diagnosed with Down syndrome in the future? That it may one day (soon) be possible to change a baby’s DNA so they won’t actually be born with Down syndrome? If it sounds like science fiction, that’s because it feels so far reached. Nonetheless, it may not be out of the realm of possibility.

One of the publications I follow on Facebook recently shared an article about that very possibility and posed a question, “Suppose you are pregnant. A genetic test reveals your child has Down syndrome, and you are offered the option to undo the genetic mutation. Would you?”

What do you think? Would you edit your child? Regardless of how close science is to allowing us to alter DNA, do you think the world would be a better place if people with Down syndrome no longer existed?

I went to the comments section of that post hopeful. Surely, everyone knows how outlandish it sounds. Indeed, how horrible the thought. But once again, hope in humanity was misplaced. The people spoke, and many of them responded with a resounding, “Yes, I would absolutely edit my child!”

But I wasn’t ready to give up on the people just yet. Perhaps they just hadn’t thought it all through. So I engaged with some of them (perhaps a bit passionately). I explained my beloved son has Down syndrome and we happen to like it. I explained one of them was wrong to compare Down syndrome to cancer. I tried sharing stats about the positive impact people with Down syndrome tend to have on their families. Ultimately, it seems I got nowhere with the people who decided to respond to me. In fact, one guy told me my son was a “genetic and familial dead end.” He also called him “defective.”

Obviously, I think the guy was wrong. But whether people were nice or mean about it, they came from a perspective I fear far too many people share. It’s a perspective I have even heard from people who share my Christian worldview. It goes something like this, “Down syndrome is a flaw that would not exist in a perfect world.”

Now, if that’s true, then sure, edit that DNA.

But I think that perspective is mistaken. It assumes Down syndrome is a problem to be solved. A defect to be fixed. I don’t believe that is true.

Now, genetically speaking, I see why people are tempted to call it a flaw. People don’t typically have 3 copies of the 21st chromosome. People with Down syndrome are truly unique. But the fact it occurs because someone has that extra chromosome is an important thing to consider. They have that chromosome from the very beginning of their development. It is literally always part of them. To remove it would be to destroy part of their body. A fundamental part of them would be lost.

We love our son. And it’s not as if we love him even though he has Down syndrome. No, we would miss the extra chromosome if he were to wake up tomorrow without it. It’s part of what makes him who he is. The idea that so many in our world seem to view people like him negatively saddens me. And as I think about the bright future that father told me about, I fear it may not come to pass. After all, it’s clear a lot of people seem to think the world is better off without people who have Down syndrome. It’s also clear that many well-intentioned people see those with Down syndrome as in need of fixing. Perhaps the great strides we’ve made won’t last.

Something I was told more than once as I interacted with people in the comments section was that it would be best for the child to not be born with Down syndrome. They would have a better “quality of life” without it. That assertion seems to have little basis, though. While people with Down syndrome often do require some extra help with things like learning and physical milestones, how does one presume to quantify the quality of someone else’s life? Especially considering the people living those lives are pretty happy with how things are going.

Although there is that obnoxiously overstated stereotype that people with Down syndrome are always “so happy,” there is a very interesting statistic I recently read. It turns out that  97 percent of people with Down syndrome are indeed happy with their lives.[6]

That’s higher than any other demographic. And, statistically speaking, the families of people with Down syndrome are usually pretty healthy as well.[7]

By the numbers, life is perhaps arguably better when someone has Down syndrome. And that better life extends beyond the individual. Families are better off. Schools are better off. Communities are better off. The world is better off with people who have Down syndrome. To jettison that community from our world would not be progress. Trisomy 21 is not a disease to be eradicated. It’s a gift that, as of now, occurs in approximately 1 in every 700 births in America. Please join me in advocating for a future where people with Down syndrome continue to make our world a better place. Just as I believe God intended.

Follow this journey at Adam’s Notepad

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