inspirational essay about down syndrome

An Open Letter to my Daughter with Down Syndrome

by Stephanie Mullowney | Apr 11, 2019 | Disability , Single Parenting

Dear sweet Hannah Grace,

My beautiful daughter, my life-changer, my literal gift from god..

I want you to know some things about yourself that others may not know. I want to tell you how you’ve impacted not only mine, but so many lives around this whole big world. I want to tell you about the special way your Creator knitted you together. I know you’re only 3 years old at the time I write this, but when you’re older you will understand just how amazing you really are. One day I may not be here to tell you how proud I am of you. So I’ll write it down and put it in a book for you to read when you’re older so you never forget how special you are. I want to tell you…your story.

I want to tell you how you’ve impacted not only mine, but so many lives around this whole big world.

I want to start by telling you about the day you were born. We came all the way from Maui, HI back to TN so we could be around family. The big day came and I was so excited to meet you! I had you all natural, so yeah, ouch! Nothing in this world could’ve prepared me for the moment they laid you on my chest. I knew that I loved you already, but when I saw you look at me with those almond shaped eyes… I knew.

It’s as if you said, ‘Mommy, it’s me, your baby. I hope you love me. I’m the heartbeat you heard that you were so excited about. I’m the same baby who curled up safely inside you. I’m the same one who fell asleep to your heartbeat lullaby. I heard you sing to me in my cozy darkened world. You told me you loved me so much. I will change your life if you will accept mine. I am fearfully and wonderfully made. I am different, but that’s ok Mommy, that’s how God wanted me. I will do amazing things if given the chance. I will make you smile everyday. God made me especially for you. He said you needed me, and I am all yours now.’

Yes my gorgeous girl, I knew you were an angel. You see, when Jesus made you, he gave you something very rare. It’s a gift to this world though some may not realize it. And the people who choose to see what a beautiful gift you are know for certain they have been touched by something bigger than themselves, and they will never be the same after seeing your heart.

The people who choose to see what a beautiful gift you are know for certain they have been touched by something bigger than themselves, and they will never be the same after seeing your heart.

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Empowering Down Syndrome Quotes

Our differences are what make us unique, and individuals with Down syndrome exemplify this beautifully.
Having Down syndrome may mean having an extra chromosome, but it also means having an extra dose of love and joy.
Down syndrome is not a limitation, but rather a celebration of the beauty in diversity.
In a world that often values conformity, individuals with Down syndrome inspire us to embrace our differences and celebrate diversity.
People with Down syndrome teach us that love knows no bounds and that happiness can be found in the simplest of moments.
No obstacle is too great for those with Down syndrome; they have the determination and resilience to conquer any challenge.
There is no such thing as ‘normal,’ just different. And that’s what makes life interesting and beautiful.
Individuals with Down syndrome are not defined by their diagnosis; they are defined by their strength, character, and potential.
The world may see Down syndrome as a disability, but those touched by it see it as a gift that brings endless love and joy.

World Down Syndrome Awareness

Individuals with Down syndrome have an incredible ability to see the beauty in everyday life and spread positivity wherever they go.
Those with Down syndrome remind us that life is not a race; it is a journey to be savored and cherished.
In a world that often values intelligence over kindness, individuals with Down syndrome teach us the importance of compassion and empathy.
Down syndrome is not a tragedy, but rather a chance to witness the power of love and the resilience of the human spirit.
The differences that make individuals with Down syndrome stand out are the same differences that make them shine.
No challenge is too great for those with Down syndrome; they have the ability to defy expectations and inspire us all.
Individuals with Down syndrome may have an extra chromosome, but they also have an extra dose of love to share with the world.
We may have different abilities, but we all have the ability to love and be loved.
In a world that often values perfection, individuals with Down syndrome teach us the beauty of imperfection and the power of acceptance.

Celebrate World Down Syndrome Day

People with Down syndrome see the world through a lens of love and positivity, inspiring us to do the same.
The joy that individuals with Down syndrome bring into the world is immeasurable; they are truly a gift to us all.
Those with Down syndrome may have unique needs, but they also have unique talents and abilities.
Labels do not define us; it is our actions and how we treat others that truly matter.
Having Down syndrome is not a limitation, it is an opportunity to show the world what we are capable of.
In a world that often values success in material terms, individuals with Down syndrome remind us that the greatest success is found in the love and connections we share with others.
You can’t measure a person’s worth by the number of chromosomes they have; it is the content of their character that truly matters.
The potential of individuals with Down syndrome is limitless; with love and support, they can achieve anything they set their minds to.
We may look different on the outside, but on the inside, we are all the same – deserving of love, respect, and acceptance.

Motivational Quotes about Syndrome Mom

The beauty of diversity lies in the fact that we are all unique; individuals with Down syndrome embody this diversity in the most beautiful way.
People with Down syndrome may face challenges, but they also possess incredible resilience and strength.
Having Down syndrome doesn’t make someone less capable; it simply means they navigate the world in their own unique way.
Individuals with Down syndrome light up a room with their contagious laughter and infectious smiles.
Those with Down syndrome remind us to find joy in the smallest of victories and appreciate the beauty in everyday moments.
People with Down syndrome are not defined by their diagnosis; they are defined by their dreams, aspirations, and the love they bring into the world.
In a world that often values appearance, individuals with Down syndrome teach us to look beyond the surface and appreciate the beauty within.
Those with Down syndrome have the ability to bring people together and create a sense of community through their genuine and loving spirits.

World Down Syndrome Awareness Day

The world needs more people like those with Down syndrome – individuals who spread love, kindness, and joy wherever they go.
The strength and resilience of individuals with Down syndrome are an inspiration to us all; they remind us to never give up and always keep pushing forward.
The love that individuals with Down syndrome have for others is unconditional, pure, and unwavering.
We may have different abilities, but we all have the ability to make a positive impact on the lives of others.
Those with Down syndrome remind us that it is not our differences that divide us, but rather our attitudes and actions towards one another.
Individuals with Down syndrome have an incredible ability to find joy in every moment and appreciate the simple pleasures that life has to offer.
In a world that often focuses on limitations, individuals with Down syndrome show us that possibilities are endless and dreams can be achieved.
People with Down syndrome possess a unique ability to touch the hearts of those around them and remind us of what truly matters in life.

Down Syndrome T-shirt

The love and acceptance shown by individuals with Down syndrome teach us the true meaning of compassion and empathy.
Being different doesn’t mean being less; individuals with Down syndrome have proven time and time again that they are capable of great things.
Those with Down syndrome have an incredible ability to bring out the best in those around them and inspire us to be better versions of ourselves.
The world is a brighter place because of individuals with Down syndrome; their genuine smiles and infectious laughter have the power to light up even the darkest of days.
In a world full of labels and stereotypes, individuals with Down syndrome challenge us to see one another for who we truly are – unique individuals deserving of love and acceptance.
Having Down syndrome is not a burden, it is a privilege; those touched by it are given the opportunity to witness firsthand the power of love, resilience, and determination.
People with Down syndrome teach us that life is not about what we achieve, but rather about the love we give and the connections we form along the way.

FAQ Empowering Down Syndrome Quotes

What is the significance of march 21st in relation to raising awareness about down syndrome.

March 21st is celebrated as World Down Syndrome Day (WDSD), chosen to signify the uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down syndrome. This day is dedicated to raising public awareness and advocating for the rights, inclusion, and well-being of people with Down syndrome.

Empowering Down Syndrome Quotes part 2

Can you share an inspirational quote that might resonate with a parent of a child with down syndrome during awareness month.

“My child with Down syndrome is not a diagnosis, but a person who has taught me that love needs no words.”

How does the blue and yellow ribbon function as a symbol during Down Syndrome Awareness Month?

The blue and yellow ribbon serves as an international symbol of Down syndrome awareness. It represents the solidarity of the community, spreading awareness and supporting the inclusion and rights of individuals with Down syndrome.

What is an important message to spread during Down Syndrome Awareness Month to promote inclusion?

“Awareness is not just about recognizing the abilities of someone with Down syndrome but also about creating an inclusive society where everyone is valued equally.”

How can special education (sped) teachers contribute to Disability Awareness Month, specifically regarding children with Trisomy 21?

Sped teachers can play a crucial role by educating their students about inclusion and diversity, organizing events that celebrate the achievements of individuals with Down syndrome, and advocating for policies that support their needs and rights.

What does the phrase “Let people judge, but the most important thing is to not count chromosomes, but the moments that make you feel beautiful” mean in the context of Down syndrome advocacy?

This phrase emphasizes the importance of valuing individuals with Down syndrome for who they are, rather than focusing on their genetic condition. It advocates for acceptance and appreciation of the beauty in diversity, highlighting that what truly matters is the joy and love they bring into lives.

How does the term “Peace, Love, T21” encapsulate the spirit of World Down Syndrome Day and the broader movement for awareness?

“Peace, Love, T21” is a catchy and heartfelt slogan that encapsulates the goals of World Down Syndrome Day: to foster a peaceful world filled with love and acceptance for individuals with Trisomy 21 (T21). It represents a call for unity, compassion, and understanding towards creating a more inclusive society.

With the article Empowering Down Syndrome Quotes is also read

Humility is not thinking less of yourself, but thinking of yourself less. – C.S. Lewis Humility is the foundation of

Speak your truth, even if your voice shakes. Believe in yourself, and others will too. I am enough. My worth

Trust is like glass, once broken, it’s hard to put it back together. A liar will always be a liar,

Miracles are the fingerprints of God. God’s miracles are often disguised as ordinary events. Believing in miracles is a surefire

Think outside the box The sky’s the limit No dream is too big Dare to be different Embrace the unknown

Trust in the Lord with all your heart. – Proverbs 3:5 Love your neighbor as yourself. – Mark 12:31 I

I am trying to make sense of how I can move through the world in a way that makes sense

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“Be Inspired” Stories

Sometimes hearing that there’s someone else out there who knows what you’re going through can be the most empowering support imaginable. Over the years our team has worked with and been touched by some of the most amazing individuals and families you could ever want to meet. These are people who inspire us every day. Here are some of their stories.

JUST LIKE YOU (DOWN SYNDROME)

Explores the life, hopes, challenges and dreams of three kids living with Down syndrome. Elyssa, Rachel and Sam share personal stories to help viewers better understand their condition and why they wish to be treated just like you. Each of our stars has their own talents, characteristics, strengths and challenges. Down syndrome is just one part of who they are and this film identifies how to handle and accommodate differences while celebrating the many similarities our friends with Down syndrome have with their peers.

“Have you ever had the wind knocked out of you becauseyour life’s path had changed so drastically that it didn’t feel like you were able to enjoy it? This happened to me and Mike when we got the prenatal diagnosis that Beau had Down syndrome. There are a lot of different emotions that go along with a prenatal diagnosis and it’s easy to feel like you’re alone. That’s where the Rocky Mountain Down Syndrome Association (RMDSA) came in. They called me up and congratulated me on the news of our baby boy. That’s right – they CONGRATULATED us! And then they sent an awesome care package filled with literature for us and gifts for Beau. They connected me with a local mom’s group, and that’s where I was able to regain the joy in my pregnancy and in the anticipation of our little boy’s arrival.”

“When we got our prenatal diagnosis, it felt scary at first. There were so many unknowns. RMDSA helped us so much by introducing us to a parent volunteer who introduced us to her family. It helped so much to meet them and see their family interact. We learned that life would feel normal again, no matter how many chromosomes our baby had! Now I know that having a child with Down syndrome is just like having a life with any child. There are joys and challenges. Some days things feel a little more challenging, but it just makes us enjoy the celebrations even more. Life is so much better with our daughter and she is the light of our lives!”

“We found out that our son was diagnosed with Down syndrome at the end of the first trimester of pregnancy. Prior to our first meeting with RMDSA I didn’t even know what Down syndrome was. RMDSA has been an absolute guiding light for not just the development of our son but also the development of our entire family. We are eternally grateful for the work of RMDSA. Without their help, our lives would be very different.”

“We were scared and confused when we first received the news of our child’s Down Syndrome diagnosis. We reached out to RMDSA for some information, and received a gift even greater: an understanding and joy that changed our fear and confusion into excitement and joy at having been blessed with a child with Down Syndrome. We are forever grateful to RMDSA for their care and passion of families and their willingness to be so accommodating and supportive of our needs. Thank you!”

101 Inspirational Quotes for Down Syndrome: Celebrating Uniqueness

Embracing the beauty of uniqueness and celebrating the extraordinary spirit of individuals with Down Syndrome, we present 101 unique and original inspirational quotes. In this heartfelt collection, we shine a light on the strength, love, and boundless potential that these remarkable individuals bring into the world, reminding us all to cherish diversity and foster a society that values every precious life.

101 Inspirational Quotes for Down Syndrome

1. “In the tapestry of life, individuals with Down syndrome weave threads of unique beauty.”

2. “Every step taken by someone with Down syndrome is a testament to courage and determination.”

3. “Diversity blooms brightly in the garden of humanity, and Down syndrome is a unique and cherished flower.”

4. “The potential of individuals with Down syndrome knows no bounds; they are stars in a limitless sky.”

5. “Embrace the extra chromosome, for it brings an abundance of love and joy.”

6. “In the dance of life, those with Down syndrome twirl with grace and leave an indelible mark on our hearts.”

7. “Let the world see the beauty within, as individuals with Down syndrome radiate love and kindness.”

8. “Different abilities, same dreams – individuals with Down syndrome inspire us to strive for greatness.”

9. “Like a kaleidoscope, individuals with Down syndrome paint our world with vibrant colors of hope and possibility.”

10. “In the book of life, those with Down syndrome write chapters of resilience and perseverance.”

11. “Each individual with Down syndrome is a masterpiece, painted with strokes of love and tenderness.”

12. “A heart filled with compassion is the true treasure of an individual with Down syndrome.”

13. “A smile from someone with Down syndrome is a glimpse of the purest and most genuine happiness.”

14. “United we stand, celebrating the uniqueness of individuals with Down syndrome and cherishing their gifts.”

15. “In the symphony of life, those with Down syndrome play instruments of harmony and unity.”

16. “Embracing differences paves the way for a world where everyone with Down syndrome is valued and loved.”

17. “The strength of character displayed by individuals with Down syndrome is an inspiration to us all.”

18. “Shine bright like the stars, for that’s how individuals with Down syndrome illuminate our lives.”

19. “Through challenges and triumphs, individuals with Down syndrome teach us the true meaning of love.”

20. “In the tapestry of humanity, individuals with Down syndrome are a unique and vital thread.”

21. “In the classroom of life, individuals with Down syndrome are extraordinary teachers of empathy and kindness.”

22. “Dreams take flight on the wings of hope, and individuals with Down syndrome soar to new heights.”

23. “A world filled with acceptance and inclusion is a world where individuals with Down syndrome flourish.”

24. “Just as a butterfly emerges from its cocoon, individuals with Down syndrome reveal the beauty within.”

25. “The resilience of individuals with Down syndrome is like a lighthouse guiding us through stormy seas.”

26. “See the ability, not the disability – individuals with Down syndrome are champions of possibility.”

27. “With unwavering determination, individuals with Down syndrome overcome obstacles and inspire us to do the same.”

28. “Every step forward is a testament to strength and courage – individuals with Down syndrome keep marching on.”

29. “The rhythm of life beats in harmony with the spirit of individuals with Down syndrome.”

30. “Embrace differences like a bouquet of diverse flowers, with individuals with Down syndrome as the most beautiful bloom.”

31. “Like a masterpiece painted on canvas, individuals with Down syndrome create a lasting impact on our world.”

32. “In the grand symphony of life, individuals with Down syndrome play a unique and irreplaceable melody.”

33. “Every milestone achieved by someone with Down syndrome is a triumph celebrated by humanity.”

34. “The laughter of individuals with Down syndrome is the sweetest melody that fills our hearts with joy.”

35. “In the dance of life, individuals with Down syndrome have moves that inspire us to dance along.”

36. “The world becomes a better place when we embrace the differences that individuals with Down syndrome bring.”

37. “Each person with Down syndrome is a precious gem, shining brightly in the crown of diversity.”

38. “With love as their guiding star, individuals with Down syndrome navigate the seas of life.”

39. “The warmth of an embrace from someone with Down syndrome melts away barriers and prejudices.”

40. “Like a compass, individuals with Down syndrome show us the true direction of acceptance and love.”

41. “The boundless love of individuals with Down syndrome ignites a flame of compassion in all of us.”

42. “In the gallery of life, individuals with Down syndrome display paintings of inspiration and hope.”

43. “Each day is a canvas, and individuals with Down syndrome paint it with colors of joy and laughter.”

44. “With hearts full of love, individuals with Down syndrome remind us to cherish the simple pleasures of life.”

45. “In the tapestry of humanity, individuals with Down syndrome are the brightest threads of love and unity.”

46. “Every word spoken by someone with Down syndrome has the power to touch the depths of our souls.”

47. “When we celebrate diversity, we celebrate the unique brilliance of individuals with Down syndrome.”

48. “Life’s challenges are like stepping stones, and individuals with Down syndrome traverse them with grace.”

49. “A smile from someone with Down syndrome is a beacon of happiness that lights up the world.”

50. “In the mosaic of life, individuals with Down syndrome create a masterpiece of inclusion and love.”

51. “The dreams of individuals with Down syndrome reach for the stars, guiding us towards a brighter tomorrow.”

52. “With open hearts, we embrace the joy and love that individuals with Down syndrome bring into our lives.”

53. “The spirit of individuals with Down syndrome shines like a lighthouse, guiding us towards acceptance and understanding.”

54. “Just as a phoenix rises from the ashes, individuals with Down syndrome emerge with strength and resilience.”

55. “In the garden of life, individuals with Down syndrome bloom with the most vibrant and beautiful flowers.”

56. “The laughter of individuals with Down syndrome is the sweetest melody that fills our hearts with joy.”

57. “With every step they take, individuals with Down syndrome inspire us to keep moving forward with love and kindness.”

58. “In the grand tapestry of life, individuals with Down syndrome are threads that weave a message of acceptance and love.”

59. “The world becomes a better place when we embrace the unique gifts and talents of individuals with Down syndrome.”

60. “With hearts full of love, individuals with Down syndrome paint our lives with colors of happiness and hope.”

61. “Each word spoken by someone with Down syndrome has the power to touch hearts and change lives.”

62. “The strength and resilience of individuals with Down syndrome is an inspiration to us all.”

63. “Just like a diamond, individuals with Down syndrome are precious and shine brightly in our lives.”

64. “In the journey of life, individuals with Down syndrome light the way with their boundless love and joy.”

65. “With unwavering determination, individuals with Down syndrome overcome obstacles and inspire us to do the same.”

66. “The compassion and empathy shown by individuals with Down syndrome remind us of the true essence of humanity.”

67. “In the symphony of life, individuals with Down syndrome play a unique and irreplaceable melody.”

68. “Like a butterfly emerging from its cocoon, individuals with Down syndrome show the beauty of transformation and growth.”

69. “Embrace differences like a bouquet of diverse flowers, with individuals with Down syndrome as the most beautiful bloom.”

70. “The dreams and aspirations of individuals with Down syndrome are like stars guiding us towards a better future.”

71. “In the classroom of life, individuals with Down syndrome teach us invaluable lessons about love, acceptance, and resilience.”

72. “Every accomplishment of someone with Down syndrome is a triumph for the whole world to celebrate.”

73. “The love and joy shared by individuals with Down syndrome light up the darkest corners of our hearts.”

74. “Like a breathtaking sunset, the presence of individuals with Down syndrome fills our lives with awe and wonder.”

75. “With boundless love and joy, individuals with Down syndrome color our world in the most beautiful hues.”

76. “Every day spent with individuals with Down syndrome is a reminder of the preciousness of life and the importance of love.”

77. “In the gallery of life, individuals with Down syndrome showcase artwork that touches the souls of all who witness it.”

78. “The smiles of individuals with Down syndrome are the keys that unlock the doors to our hearts.”

79. “Just as a rainbow brings hope after the rain, individuals with Down syndrome bring hope and joy to our lives.”

80. “In the grand symphony of life, individuals with Down syndrome play the most soulful and heartwarming melodies.”

81. “With hearts full of love and acceptance, we can build a world where individuals with Down syndrome thrive and succeed.”

82. “Every person with Down syndrome is a beacon of light, guiding us towards a more inclusive and compassionate society.”

83. “The journey of individuals with Down syndrome is an inspiration to us all, showing us the power of perseverance and determination.”

84. “Like the stars in the night sky, individuals with Down syndrome bring a radiant and captivating presence into our lives.”

85. “In the tapestry of humanity, individuals with Down syndrome are threads of love that hold us together in unity.”

86. “The boundless love and compassion of individuals with Down syndrome enrich our lives and touch our hearts in profound ways.”

87. “With love and acceptance as our guiding principles, we can create a world where individuals with Down syndrome are celebrated for their uniqueness.”

88. “Every challenge faced by someone with Down syndrome is an opportunity for growth and a reminder of the strength within.”

89. “The laughter and joy shared by individuals with Down syndrome are the most beautiful and contagious melodies.”

90. “In the classroom of life, individuals with Down syndrome teach us about the true meaning of kindness and empathy.”

91. “With open hearts and minds, we can learn invaluable lessons from individuals with Down syndrome about love, resilience, and acceptance.”

92. “Just like the first rays of dawn, the presence of individuals with Down syndrome brings a sense of hope and renewal.”

93. “The beauty and uniqueness of individuals with Down syndrome are like rare flowers, cherished and admired by all who encounter them.”

94. “In the grand tapestry of life, individuals with Down syndrome are the brightest and most vibrant threads that weave a story of love and inclusion.”

95. “The world becomes a better place when we embrace the gifts and talents that individuals with Down syndrome bring, enriching our lives with their presence.”

96. “With hearts full of love and acceptance, we can create a world where individuals with Down syndrome are empowered to reach for the stars and achieve their dreams.”

97. “Every achievement and milestone of someone with Down syndrome is a testament to the power of determination and a reminder that nothing is impossible with love and support.”

98. “The kindness and compassion shown by individuals with Down syndrome are like rays of sunshine, warming our hearts and brightening our days.”

99. “In the gallery of humanity, individuals with Down syndrome display artwork that speaks to the depths of our souls, reminding us of the beauty of diversity.”

100. “The dreams and aspirations of individuals with Down syndrome are like stars guiding us towards a future filled with acceptance, love, and inclusion.”

101. “With open hearts and minds, we can build a world where individuals with Down syndrome are celebrated and embraced for the unique and beautiful souls they are.”

Tara Shekede

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10 inspirational quotes about living with Down Syndrome

March the 21st is International Down Syndrome Day, a day to educate people about those with Down Syndrome, and the challenges they face. We want to help spread awareness about Down Syndrome and all of the great things people living with Down Syndrome do all year round!

Here are some of our favourite quotes about Down syndrome.

‘No disability or dictionary out there is capable of clearly defining who we are as a person.’

– Robert M Hensel, Guinness World Record holder, Poet and advocate

“It’s not about celebrating disabilities, it’s about celebrating abilities.”

– Chris Burke, American Actor & NDSS Goodwill Ambassador

“Aren’t we all human? Don’t we all deserve to be respected and treated equally?”

– Madeline Stuart, Australian Catwalk Model

– Manager of Advocacy at the National Down Syndrome Society

“A long time ago when I was very little, I dreamed about being on stage. Some people told me I would never be able to do it, so I only paid attention to those who told me that I could.”

– Lauren Potter, Actress

“I have one chromosome more than you… So what?”

– Karen Gaffney, Speaker and Advocate for People with Disabilities

– Jamie Brewer, Actress

“If you take one thing away from today, I want you to know that I am a man with Down syndrome and my life is worth living.”

– John Franklin “Frank” Stephens, Athlete

“When you have a disability, knowing that you are not defined by it is the sweetest feeling.”

-Anne Wafula Strike, Paralympic wheelchair racer

“I have Down’s Syndrome but that is not all I am.”

– Sarah Gordy, Actor

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60 Down Syndrome Quotes For Awareness And Acceptance

Inspirational Quotes

Naperville Sun | Daughter with Down syndrome an inspiration for…

Naperville Sun

Naperville sun | daughter with down syndrome an inspiration for essay, writing career.

Her essay, “My Answered Prayer,” is just one example. The Naperville author’s story is among those included in the new “Chicken Soup for the Soul: The Power of Gratitude.” The collection of 101 real-life stories, released Tuesday, aims to help readers experience the benefits of gratitude and realize the impact thankfulness can have on their lives.

Her essay, which had previously been published in a National Association for Down Syndrome newsletter, tells the story of how she and her husband responded when they learned their soon-to-arrive daughter would have Down syndrome.

“When I saw the (topic of) gratitude, I was like, ‘Oh I have the perfect one for that,’ ” Goodfellow said. “So I was really glad that I could kind of dig that up because it has been an article that I’ve had close to my heart, that I feel strongly about, and I was thrilled to get it out there to a much wider audience.”

In her essay, she recounts how they dealt with news they received during an ultrasound 20 weeks into her pregnancy. They were told their daughter likely had a chromosomal defect that was “incompatible with life.” The best-case scenario, the doctors said, would be Down syndrome.

“We spent the next three days praying our baby would be OK. … We prayed for Down syndrome,” Goodfellow wrote. “Our prayers were answered, and we received the most precious gift we could have ever hoped for — we were having a daughter, with Down syndrome.”

While they encountered more health concerns throughout the remainder of the pregnancy, they focused on the positive. Goodfellow wrote she would forever be grateful for the circumstances surrounding her prenatal diagnosis.

“I was given the opportunity to see my daughter as a blessing, a child who not only survived, but also thrived in spite of her challenges,” she wrote.

The essay is her second to appear in the “Chicken Soup for the Soul” series of books. Last fall, her essay “Perspective” was published in the volume “Think Possible.” That piece is also about her daughter Lily, now an eighth-grader at Madison Junior High School in Naperville.

“I was all about putting things into perspective and more about when we got Lily’s diagnosis, the fact we didn’t think she was going to survive,” Goodfellow said. “And so then when you end up holding this baby with Down syndrome in your arms, and she’s pink and yelling and crying, and you get to actually hold her when everybody said you wouldn’t get to hold her and she’d be air-lifted to a different hospital. So it was just all those things about keeping it in perspective.”

Having stories published in two “Chicken Soup” books in one year is exciting, she said. Goodfellow, who is starting a new career as a children’s book writer, submitted the essays after a teacher in one of her classes mentioned the series as a place where writers could get publishing credits.

Prior to having children, she was an editor and worked as a rare and used-book dealer. At the University of Iowa, she majored in English and journalism.

“I always loved books and always wanted to be a writer,” said the mother of three. “Once we had kids, I slowed down a bit with all of the work aspirations. Now that the kids are a little bit older, I’m trying to get back into writing again, and I’m working on some different projects — all featuring characters with disabilities and trying to just encourage friendship and inclusion.”

Among those is a story about Sherman the sheep, who is mostly bald due to alopecia. Earlier this year Goodfellow was able to share the story with her youngest daughter Holly’s class. An illustrator friend of Goodfellow’s created drawings to go with the story.

“(The teacher) let me go in and read the story to the kids and see the way they reacted and get some conversation going to see if I was really conveying the message that I was hoping to convey,” Goodfellow said.

The story was a hit with the students.

“Now it’s just trying to find a publishing house that will love it, too,” she said.

Goodfellow is no stranger to speaking to classrooms full of students. Ever since Lily was born, she has been very active with the National Association for Down Syndrome.

“I’m a public speaker for them. It used to be that I would go out and just speak to doctors and nurses and talk at the hospitals about how to deliver a diagnosis to parents when they find out their child has Down syndrome or is going to have Down syndrome,” she said. “Over the years it’s kind of morphed into where I just really love talking to the kids and going in and doing these disability awareness presentations. Over the past year we’ve tweaked it a bit so we’re not just going in and talking about Down syndrome. We go in and we talk about all disabilities.”

She often speaks with Michelle Anderson, a 21-year-old woman with Down syndrome, who is a self-advocate.

“She talks to the kids about what it’s like growing up with Down syndrome and what it’s like having it. And she shows them all the photographs of her doing all the same things they did growing up and that they’re doing now,” Goodfellow said. “And depending on the age group, we’ll show a video about autism, or I’ll read a story to the younger kids.

“But then we just have a really open discussion on how you treat other people. It opens up a really good opportunity for kids to ask questions they were maybe afraid to ask before or share things they were afraid to share before.”

She wrote about making school presentations in the most recent issue of Chicago Special Parent magazine. In the article, she talks about the time her son, Luke, first heard someone call his sister “retarded.” So when she speaks to students, she calls upon another book series to ask them a question: What word in the “Harry Potter” stories is so offensive, it should not be spoken?

“Kids start to realize this is really, really disrespectful,” Goodfellow said. “Like ‘mudblood,’ it’s not something you can control. You were born that way.

“It’s cool to see the kids realize just how hurtful the word can be.”

Kathy Cichon is a freelance reporter for the Naperville Sun.

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93 Down Syndrome Essay Topic Ideas & Examples

🏆 best down syndrome topic ideas & essay examples, ⭐ good research topics about down syndrome, 📃 simple & easy down syndrome essay titles, ❓ research questions about down syndrome.

Living with Down Syndrome: A Case Study from the UAE Healthy influence of these mammals is proved and the UAE tries to create the best conditions for people who suffer from Down Syndrome.
Child with Down’s Syndrome – Life Story After playing for a while, he followed us to the living room, and I was moved to tears when he took my hand into his and asked my name.
Down’s Syndrome Recurrence Discussion A 30-year-old mother has a 1 in 1000 chance of giving birth to a child with Down’s syndrome. When reducing the risk of 1 in 1000 by three, it is possible to calculate an increasing […]
Prenatal Testing for Down Syndrome The key points of contention in the discussion are the justification of the risks, the ethical choice on the principle of health, and the responsibility for stigmatization.
The Down Syndrome Impacts on the Body Face morphology and upper nasal mucosa infections are the primary causes of chronic ear problems in newborns with Down syndrome. Developmental delays and behavioral issues in youngsters with Down syndrome are common.
Challenges of Families with Down Syndrome Children The first challenge that the White family encountered was the decision of what to do with the fetus. It was only after the birth that Herzenbergs knew that the child had Down syndrome, while Whites […]
Down Syndrome Genetics and Behaviors Using current research literature on behavioral issues and novel treatments for Down syndrome, this paper explores and discusses behavioral inflexibility, restrictive and repetitive behaviors, and Down syndrome’s neurogenetic nature.
Down Syndrome: Congenital Heart Disease and Prenatal Testing Its purpose is to “test the validity and reliability of a scale that measures pregnant women’s attitudes and decision-making concerning prenatal Down syndrome screening and diagnosis in urban areas of Taiwan”.
Comprehensive Care Plan for Patients with Down Syndrome It may also be highly beneficial to evaluate significant events that may influence the physical and mental health of the patient.
Maternal Serum and Down Syndrome The main purpose of the research is to identify the authors who considered the problem of Down’s syndrome causes and analyze the results of the research conducted by those scholars.
Down Syndrome: Implications for Learning and Development At the same time, the woman’s age of 35 and older is considered a risk factor that increases the chance of Down syndrome in the baby.
Down Syndrome, Symptoms, Prevention and Treatment This extra copy of chromosome affects the development of the body and brain of the children born with this condition. Down syndrome is a genetic disorder and the probability of having a child with this […]
The Great Down-Aging Syndrome: Why 40 Is the New 20 It has also been observed that the middle-aged people are fervent consumers of those products that are mainly used by the young. Not all middle-aged consumers are attracted to products that are meant for the […]
Blunt Abdominal Trauma in Down Syndrome Patient Delving into the case, we could also admit the fact that the usage of the given examination procedure helped to determine the signs of Systemic inflammatory response syndrome, which could be extremely dangerous for the […]
Down Syndrome: Coping and Supporting Individuals with DS DS is one of the foremost causes of cognitive impairment in children; however, with early interventions and medical advances, the potential for individuals with DS is expanding by the day.
Pregnancy Termination in Down’s Syndrome Case One of the reasons why women of different ages decide to terminate their pregnancy is any genetic disease of the fetus and the risk of having an unhealthy child.
Down Syndrome as the Most Common Genetic Condition in the US Firstly, to describe Down syndrome and the life of people with this disorder, it is necessary to give a scientific definition to this condition and underline the causes. People with Down syndrome are also people, […]
Down Syndrome and Dementia: Theories and Treatment The genetic material in the chromosome 21 is responsible for the development of the disorder, and its symptoms appear at the infantry stage of development.
Down Syndrome: How to Lead Normal Lives with This Condition Mental development in children with Down syndrome varies greatly and at birth, it is not possible to predict the extent to which the child will be affected in terms of physical symptoms and cognitive development.
Learners with Down Syndrome: A Handbook for Teaching Professionals The research premises on a set of research studies to provide experimental evaluation of current programs that address education of children with disabilities.
Types of Tests Identifying Down Syndrome The major cause of the syndrome is associated with the existence of extra copy of the 21st chromosome. The triple screen test serves to identify Down syndrome in cases the level of AFP is low […]
Living With the Down Syndrome: Causes and Symptoms
Corrigendum: Pioglitazone Improves Mitochondrial Organization and Bioenergetics in Down Syndrome Cells
Microstate Changes Associated With Alzheimer’s Disease in Persons With Down Syndrome
Low-Resolution Place and Response Learning Capacities in Down Syndrome
Genetics and Evolution: Cystic Fibrosis and Down Syndrome
The Speech and Language Deficits of Children With Down Syndrome
Inclusive Classrooms With Down Syndrome Students
Autism, Down Syndrome and Equal Rights: A Look at the Past and Present of Diverse Populations and Sport
Down Syndrome and Spina Bifida – Cause, Effects and Treatment
Down Syndrome and the Value of Inclusive Education
Response Inhibition and Interference Suppression in Individuals With Down Syndrome Compared to Typically Developing Children
Semantic Verbal Fluency Pattern, Dementia Rating Scores and Adaptive Behavior Correlate With Plasma A 42 Concentrations in Down Syndrome Young Adults
Music Therapy and Down Syndrome
Between ‘Desperation’ and Disability Rights: Analysis of Alternative Medicine for Children With Down Syndrome
Chromosomal Abnormalities: Down Syndrome
Health Issues, Diabetes and Down Syndrome
Problems Associated With Children With Down Syndrome
Psychological and Physical Characteristics of Down Syndrome
Most Successful People Who Have Down Syndrome
Down Syndrome Affects Physical Growth, Facial Characteristics
Cognitive Skills, Behavior and Learning Potential of Preschool Children With Down Syndrome
The Causes, Symptoms, Diagnosis and Management of Down Syndrome
Children With Down Syndrome: A Developmental Disorder
Down Syndrome and the Formation of Reproductive Cells
Down Syndrome Children Interaction With Family and Peers
Causation and Developmental Course of Down Syndrome
Dance Therapy for Down Syndrome Effects and Improvements
Classroom Behaviour, Language Competence, and the Acceptance of Children With Down Syndrome by Their Mainstream Peers
Learning Styles for Children With Down Syndrome
The Negative and Positive Influence of the Media on People With Down Syndrome
Parents and Children With Birth Defects: Down Syndrome
Children With Intellectual Disabilities: Down Syndrome
Down Syndrome: Causes, Symptoms, Diagnosis, & Treatment
Development and Learning for People With Down Syndrome
The Physical and Mental Characteristics of Children With Down Syndrome, Increased Risk Factors, and the Need for Medical Care and Stimulating Environments
Maternal Line-1 DNA Methylation and Congenital Heart Defects in Down Syndrome
Health Case History: Down Syndrome and Moderate Intellectual Disability
Blood Beta-Amyloid and Tau in Down Syndrome: A Comparison With Alzheimers Disease
Improving Working Memory Abilities in Individuals With Down Syndrome: A Treatment Case Study
Allocentric Spatial Learning and Memory Deficits in Down Syndrome
What Causes Down Syndrome?
Why the Family Physician Patient Patients With Down Syndrome?
How Does Down Syndrome Affect the One Who Has It?
How Can Individuals With Down Syndrome Prosper in Life?
How Do Individuals With Down Syndrome Process Faces and Words Conveying Emotions?
Which Gender Is More Likely to Get Down Syndrome?
What Is Down’s Syndrome Caused By?
Can a Down Syndrome Girl Have a Baby?
What Are the Five Characteristics of Down Syndrome?
What Is the Life Expectancy of a Down Syndrome Person?
Can Down Syndrome Be Cured?
What Are the Three Types of Down Syndrome?
How Can You Prevent Down Syndrome During Pregnancy?
Can People With Down Syndrome Be Smart?
What Happens if the Down Syndrome Test Is Positive?
Does Down Syndrome Run in the Family?
Is Autism a Form of Down Syndrome?
Can Stress Cause Down Syndrome?
Can Two Down Syndromes Have a Normal Baby?
Is Down Syndrome a Disability?
Which Organ Is Most Often Affected by Down Syndrome?
Does a Mother’s Age Affect Down Syndrome?
Can You Tell if a Baby Has Down Syndrome in an Ultrasound?
What Is the Most Common Cause of Death in Down Syndrome?
Can a Person With Down Syndrome Drive?
Who Is the Oldest Person With Down Syndrome?
What Are the Symptoms of Down Syndrome in Pregnancy?
Can Down Syndrome Be Cured During Pregnancy?
What Race Is Down Syndrome Most Common In?
What Week of Pregnancy Does Down Syndrome Occur?
Abnormal Psychology Paper Topics
BPD Research Ideas
Epigenetics Essay Titles
Dyslexia Topics
Bipolar Disorder Research Ideas
Genetic Engineering Topics
Nervous System Research Topics
Parenting Research Topics
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Motivational And Inspirational Quotes

60 Down Syndrome Quotes For Awareness And Acceptance

March 20, 2024
Inspirational Quotes

Looking for quotes about down syndrome? We have rounded up the best collection of down syndrome quotes, sayings, liners, captions, (with images and pictures) to inspire you to recognize how unique those with this condition are.

On 21st March, is the World Down Syndrome Day. This day helps people all over the world to show their love, care, and respect for people having down syndrome. These inspirational quotes will encourage family and friends to have a positive outlook for people who are suffering from down syndrome.

Also See: Kindness Quotes

As we all know Down syndrome is among the most common abnormalities. The cause of Down Syndrome is the presence of an extra chromosome which leads to abnormal mental and physical growth. Let us have a look at world down syndrome awareness quotes and inspirational messages.

Down Syndrome Quotes

“Kids with down syndrome are the most loving souls.”

“I’m Chris Martin with down syndrome.” ― Thom Yorke
“Friends, Down syndrome is only ever a pro.” ― Heather Avis

“Down syndrome is just a part of me, not a definition of Who I m.”
“I am Lyra, a girl with down syndrome, not a ”Down’s kid”. Got it?”
“I may have down syndrome but down syndrome does not have me.”
“Sometimes the things we can’t change, end up changing us instead.”
“It’s not my extra chromosome that makes me happy, it’s because I’m loved.”
“My best friend got a tattoo to support his little sister with down’s syndrome.”
“Down syndrome happens randomly, like flipping a coin or winning the lottery.”
“We don’t change him for the world but we would like to change the world for him.”
“A negative society will affect my quality of life more than down’s syndrome ever will.”
“I’m not telling you it’s going to be easy. I’m telling you it’s going to be worth it.” ― Art Willams
“People with Down syndrome can do anything—really, really, really anything!” ― Brittany Schiavone
“I don’t know what I did to deserve a child with down syndrome, but what ever it was.. I am sure glad I did it!”
“The first step towards change is awareness. The second step is acceptance. I have down syndrome. Accept it.”
“When you have a disability, knowing that you are not defined by it is the sweetest feeling.” ― Anne Wafula Strike
“No disability or dictionary out there, is capable of clearly defining who we are as a person.” ― Robert M Hensel
“When you judge someone based on a diagnosis you miss out on their abilities beauty and uniqueness.” ― Sevenly
“We can complain because rose bushes have thorns, or rejoice because thorn bushes have roses.” ― Abraham Lincoln
“Disability is a matter of perception. If you can do just one thing well, you’re needed by someone.” ― Martina Navratilova
“I have two children. I have a Down syndrome child whom I love very much, and my wife that I love.” ― Sebastiao Salgado
“Yes, I am unique and very special as Almighty gifted me with an extra chromosome, which you don’t possess.” ― Sophia Moirang
“Disability is not a brave struggle or ‘courage in the face of adversity.’ Disability is an art. It’s an ingenious way to live.” ― Neil Marcus
“I’m not a down syndrome child. I’m a child who just happened to have down syndrome, I’m a person first. We’re more alike than different.”
“My teacher told my mom that I would never be able to follow directions or follow a routine. My mommy got me a new teacher. That fixed that.”
“Dad they think she has Down Syndrome.” He smiled genuinely as his eyes welled up with tears. “That’s okay. We love her.” ― Kelle Hampton
“I’m not an advocate for disability issues. Human issues are what interest me. You can’t possibly speak for a diverse group of people.” ― Aimee Mullins
“Each handicap is like a hurdle in a steeplechase, and when you ride up to it, if you throw your heart over, the horse will go along, too.” ― Lawrence Bixby
“I believe it is my responsibility to do what I can for children and people with Down syndrome as well as in my native Dominican Republic.” ― Albert Pujols
“My faith has strengthen. God has shown me through my son with Down syndrome to not take anything for granted. I’m more grateful.” ― Yvonne Pierre
“I have a daughter who moves mountains, breaks down stigmas and gives hope to the unnecessarily negative down syndrome diagnosis.” ― Tara McCallan
“Having a child with down syndrome is like taking the scenic route. You still get where you are going. It may take a little longer, but it will be well worth the trip.”
“I have an amazing eyes, an infectious laugh, and I always know when you need a hug.I also have down syndrome. It’s a part of me, not a definition of who I am.”
“God doesn’t give special kids to special parents. He takes ordinary, imperfect people, and gifts them with his greatest treasures. And therein, he creates special parents.”
“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 why I can describe it. I have a normal life.”
“Turns out, Down syndrome is the most common genetic disorder, occurring once in every 800 births, and no one really knows why it happens. It just does.” ― John C. McGinley
“Society’s accumulated myths and fears about disability and disease are as handicapping as are the physical limitations that flow from actual impairment.” ― William J. Brennan, Jr.
“Concentrate on things your disability doesn’t prevent you doing well, and don’t regret the things it interferes with. Don’t be disabled in spirit as well as physically.” ― Stephen Hawking
“She represents a step toward creating a world where you can have Down syndrome and still dream big. Where you can have Down syndrome and still be seen as beautiful and worthy.” ― Ashley Asti
“Lots of people with little kids or babies with Down syndrome tell me they aren’t afraid of the future for their child because of what I am doing to help people understand it better.” ― Lauren Potter
“Down syndrome: It doesn’t mean I’m down. It means I help people who are feeling down. My smiles are contagious. My laugh is medicine for the heart. My hugs are heavenly. My heart itself is pure gold.”
“I love working on ‘Glee,’ and I hope that there are more and more parts for me and other actors with Down syndrome in television and in movies so I can keep working for a long, long time.” ― Lauren Potter
“Let’s stop “tolerating” or “accepting” difference, as if we’re so much better for not being different in the first place. Instead, let’s celebrate difference, because in this world it takes a lot of guts to be different.” ― Kate Bornstein
“Kids with down syndrome are, by and large, quite affectionate and relatively guileless, and frequent, the attachments to them grow and deepen. And the meaning that parents find in it grows and deepens.” ― Andrew Solomon
“Having down syndrome means nothing to me, I’m special like everyone else. I do not let people judge me for having down syndrome. The important thing is how I feel about myself. On the inside, I feel beautiful.” ― Edward Barbanell
“Often people ask, “How can you say you’re blessed to have a son with Down syndrome?” My outlook on life has forever changed. I see my own challenges differently. He’s always showing me that life is so much bigger than self.” ― Yvonne Pierre
“When I first learned my child had down syndrome I was advised by my doctor to terminate the pregnancy. We almost did. Thank God we met the perinatal cardiologist who gave us more positive scope on Brooke’s future. At least once a week I cry thinking what I almost did. I can’t imagine my life or my family without our Brooke.”
“People with down syndrome have particular susceptibilities for some diseases like leukemias and auto-immune disorders… We believe this new technology will help us work out why this is, and what to do about it. It is not going to lead to a cure, but we hope it will help us to improve therapies for the heath issues that result.”
“The America I know and love is not one in which my parents or my baby with Down syndrome will have to stand in front of Obama’s ‘death panel’ so his bureaucrats can decide, based on a subjective judgment of their ‘level of productivity in society,’ whether they are worthy of health care. Such a system is downright evil.” ― Sarah Palin
“My youngest sister, Cindy, has Down syndrome, and I remember my mother spending hours and hours with her, teaching her to tie her shoelaces on her own, drilling multiplication tables with Cindy, practicing piano every day with her. No one expected Cindy to get a Ph.D.! But my mom wanted her to be the best she could be, within her limits.” ― Amy Chua
“My mom’s younger sister was born with Down syndrome. I was close to my grandmother when I was growing up. I remember talking to my grandmother about politics, and she told me that she regularly voted for the Democrats because she knew that they were going to look out for people like her daughter. That made an impression on me, too.” ― Josh Earnest
“When children are brought into the world with an extra chromosome—with Down syndrome, that is—the first words parents often hear are, ‘I’m sorry,’ as if Down syndrome itself is something to be down about. It’s not. I want to say, ‘Congratulations.’ I want to say, ‘What a beautiful gift you’ve brought into the world, one more being here for a reason, here with purpose.’ I want to say, ‘Oh, mama,’ or ‘Oh, dad—this new little being is going to lift you up.” ― Ashley Asti

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AN OPEN LETTER TO ALL PARENTS OF A BEING WITH DOWN SYNDROME

That is because his/her intelligence is of a different kind than you possess, and at times it will be superior to yours. You will learn at your child’s feet, as your child will learn at yours.

When your child entered this planet, a doorway opened to an unfiltered Love like you had not experienced before.

The “normal” barriers to love, those egocentric barbed walls we throw around ourselves, are missing in your child.

Love is communicated unobstructed. When your child hugs you, you know this.

At the same time, difficult behavior, cognitive blocks, and more will test you. Stretch you. Dare you to become more than you ever dreamed you could become.

When the difficulties seem greater than the love, step back. Remember the far deeper, broader vision that your child came in with in the first place.

This is all a sweet plot to stretch your heart and your patience, your understanding and your character.

Our own love and understanding eventually opens vast vistas within and without. We are blessed.

-Natalie Hale

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What I wish I'd known about raising a son with Down syndrome

The author during a beach trip with her 8-year-old son, Will.

When I look out the window and see my son Will playing in our backyard, I’m struck for the millionth time since his birth by how much he’s just like every other little boy I know. At present, he’s riding his ATV in circles around our house — I see him pass by the window every minute or so.

In a few months, as I do each summer, I’ll look out this same window and see him swimming in the pool or riding his bike in the driveway. I’ll take him to the beach and sit in the sand while he takes his surfing lessons and then join him in the waves once it’s over. I’ll drop him off at camp. We’ll visit every waterpark within driving distance of our house because that’s his happy place — the higher the better when it comes to waterslides and roller coasters.

But I’m not writing this because of the many ways Will is like every other boy. I’m writing it because he’s not. Will has Down syndrome and March 21 is World Down Syndrome Day . The date is significant because every person with Down syndrome has three copies of chromosome 21, instead of the typical two copies. So, March 21 it is.

Some moms of kids with Down syndrome have big feelings surrounding this day. I don’t. This is unusual because when it comes to Will, pretty much the only word I can come up with to describe my feelings is big.

Big, big love. Big joy. Big amazement. Big pride.

Big anxiety. Sometimes, big anger.

We agonize over every therapy, seek out every expert, spend most nights awake, torn between overwhelming love and crippling fear about the future.

Not at Down syndrome . Certainly not at Will. Not even at the things he struggles with that most people take for granted. No, the big feelings that aren’t the happy ones are about the way our society continues to devalue people with Down syndrome. The way it continues to exclude — in school, especially, but also in sports and in communities. The way parents of these incredible children are forced to fight for their most basic rights. How we agonize over every therapy, seek out every expert, spend most nights awake, torn between overwhelming love and crippling fear about the future.

I guess when I say I don’t have any big feelings about this day I mean to say that my feelings aren’t any more or less than they are any other day. Parenting a child with special needs is, at least for me, parenting at a constant 11 on a scale of 1 to 10. While I certainly love Will’s brother and sister just as much as I love him, I can say it’s a kind of love that’s freer. For the most part, I can trust they are being treated fairly, will make friends, will learn by whatever method the classroom teacher uses to teach the masses.

I can trust that they won’t be singled out or put under a microscope every day of their lives because they look or talk or act differently.

The author with her husband and three children.

When you can’t expect these same basic things for your child with a disability, you are forced to become not only their advocate, but a detective, legal expert, therapist and a hundred more roles you could never have possibly anticipated playing in your life because hey — that’s what someone else is paid to do, right? No one else gets paid to do my job. If I don't do these things, no one will.

When I say I don’t have big feelings about this day because every day is full of big feelings, the positive side of that is also true.

Every day, I’m amazed by Will. He’s the most empathetic person I’ve ever known. There’s a homeless man we often see when returning home from a nearby park. I’ve watched hundreds, maybe thousands, of people pass him by without a glance in his direction. Not Will. Every time we see the man, Will stops to sit on the sidewalk next to him. Once in a while, I like to think if Will senses the man has had a particularly hard day, Will holds his hand and tells him, “I love you.”

There’s a homeless man we often see when returning home from a nearby park. I’ve watched hundreds, maybe thousands, of people pass him by without a glance in his direction. Not Will.

This is what we need more of in our broken world. We need more Will.

The “I love you"s are plentiful. I am, by far, the recipient of the most reminders of Will’s love each day, but there are plenty left for his dad and siblings, too. No matter how many times I hear it, it’s never enough. His capacity to give love freely is like no one else I’ve ever met.

"He's the most empathetic person I've ever known," Genevieve Brown writes of her son Will.

I wish I could tell the parents just starting this journey that it gets easier. In some ways it does — Will is far more independent than I ever thought he might be. Long gone are the days I thought I’d have to watch him every moment. I don’t. But as far as the intensity that those new parents may be feeling — so far, eight years in, it’s still there. It’s that intensity though, that fierce love, the parenting at an 11 each and every day, that gives me gratitude, makes me proud and fuels the determination that he will be treated with respect and dignity and fairness.

Coincidentally, the day I was told Will would be born with Down syndrome was exactly ten years ago: March 21. I was 11 weeks and 5 days pregnant. I still remember the shoes I was wearing, the weather that day and the terror I felt.

If I could go back and speak to that very scared woman, I would tell her she will love her son every day like her heart is on fire. That Down syndrome will absolutely be a big part of their lives, but in many ways, it will be their family’s greatest gift. And that life's greatest blessings are often the things you never saw coming — even when that means parenting at an 11.

Genevieve Shaw Brown is an Emmy award-winning lifestyle journalist and the author of the parenting book, “ The Happiest Mommy You Know .” She is an avid traveler and was named the Lowell Thomas Silver Grand Award Travel Journalist of the Year. She has appeared as a parenting, travel and lifestyle expert on every network in the country. You can follow her on Instagram .

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Unfortunately, the school systems are set up to view her as "less than" — and I'm here as her mom to put up a fight.

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I was the last one to sit down at the large round table. While I am a strong, confident woman, intimidation was welling up inside me as I looked around the room. There was an occupational therapist, a speech therapist, an adaptive physical education teacher, a special education teacher, a general education teacher, a school psychologist and the school principal. While everyone's faces were friendly, I knew why we were gathered: to discuss the IEP, or Individual Educational Plan, of my 8-year-old daughter, who has Down syndrome.

I am not her biological mother. When she was born, she was diagnosed with Down syndrome shortly afterward, and her biological parents decided they did not want to be Mom and Dad to a little girl with special needs. So, she was placed in the care of an adoption agency and three months later, she became ours.

People often praise us for choosing to adopt a child with Down syndrome. The truth is, when I learned about this baby, I was no better than her birthmother. I grew up in the same world that she did, a world that tells us a child with a different skill-level is a terrible thing and something to be avoided at all costs. Yet by God's grace my heart shifted and my perspective changed, allowing me to say "yes" to adopting my baby girl.

When our daughter, whom we named Macyn Hope, came home, we found ourselves catapulted into a world we knew little about and quickly did all we could to figure it out. We discovered this "Down syndrome" thing is pretty incredible. Macyn had to work harder than most babies to achieve each milestone, and she did it with grace and tenacity As it wove itself into the normalcy of our day-to-day lives, I would often catch myself looking around trying to figure out how I got so lucky. It was as though there was this secret club of people who get to do life with Down syndrome, and somehow, I was let in.

But the world of Down syndrome is not all lazy rivers. Over the past 8 years, I've spent more time in raging rapids, clinging onto a rock for dear life as my daughter has undergone lifesaving surgeries and spent way too many hours in doctor's offices. And as we have entered the world of public schools, the taste in my mouth has been anything but sweet.

.css-107b7z2{font-family:MajestiBanner,MajestiBanner-weightbold-roboto,MajestiBanner-weightbold-local,Georgia,Times,Serif;font-size:1.625rem;font-weight:bold;letter-spacing:0.03rem;line-height:1.2;margin:0rem;}@media(max-width: 64rem){.css-107b7z2{font-size:2.5rem;line-height:1;}}@media(min-width: 48rem){.css-107b7z2{font-size:2.8125rem;line-height:1;}}@media(min-width: 64rem){.css-107b7z2{font-size:3.125rem;line-height:1;}}.css-107b7z2 b,.css-107b7z2 strong{font-family:inherit;font-weight:bold;}.css-107b7z2 em,.css-107b7z2 i{font-style:italic;font-family:inherit;} I work twice as hard for my daughter to be viewed as half as much.

It didn't take long for me to discover that I must work twice as hard for my daughter with Down syndrome to be viewed as half as much. It's simply a fact.

When Macyn steps out of our front door, she is stepping into a world where she's seen as "less than" because she does not look, talk, learn or respond to things like most people.

This has been most evident as she's started school, which brings me back to the IEP meeting. I asked for the meeting because I believe my daughter, like all daughters and sons, should get to participate in school with her peers. However, most schools still have separate classes and programs for people with different abilities, shoving them into the corners of their campuses and stamping it with, "This is what's best for the student." I realized I was going to have to fight for my daughter to be in a general education classroom. It would be me vs. eight educational professionals and a lifetime of broken systems.

I'm not saying people in education have lower expectations of people with different abilities. I have seen first-hand the love and fight of so many educators on the front lines, making sure students with different abilities are valued and esteemed. Often, it's these very people who have fought for and created the same legislation that give my daughter, and others like her, the right to attend school at all.

Here's what I am trying to say: The problem with the school systems is that the legislation in place — and even the legislation in the works — springs from the systemic idea that people with different abilities are less than. This idea has been pounded into the very fabric of humanity. Those of us in the West think we may have risen above or moved forward with programs and services such as IDEA (Individuals with Disabilities Education Act) or ADA (American with Disabilities Act), both of which are federal legislation put into place to protect the rights of people with different abilities and ensure they have full access to their communities with everything from handicap-accessible sidewalks to serving the educational needs of students with different abilities. And yes, while we have moved away from separate schools, we need to recognize that many still carry with them a perception that a person who is differently-abled is less valuable. And the stain of this reality cannot be easily scrubbed away.

If people knew my Macyn — I mean really knew her, or anyone with Down syndrome — they too would understand how truly amazing Down syndrome is and I imagine would be quick to include her in any general education classroom. They would know she genuinely desires to be friends with everyone she meets. She'll walk up to any stranger and ask, "What's your name?" Her love for life and the people who live it is immeasurable. Her desire to dance is uninhibited and disarming and I dare you to simply sit and watch. She has a way of getting others to their feet as she challenges them to a "booty shake." She is brave and kind and smart and this world is a better place because she is in it. Every day, as I hold my daughter's hand and step into a world where I must fight for her to be viewed as worthy, I pray for eyes to be opened and minds to change. We need ears to listen to those with different abilities, to hear their voices and learn from them. We need voices to speak up and shout the worth of people with different abilities. And we need hands and feet to step into this world and do the work needed for all people of all kinds of abilities to be seen as the worthy creations they are.

Heather Avis is the author of The Lucky Few .

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Friday essay: on telling the stories of characters with Down syndrome

Lecturer in Creative Writing, University of the Sunshine Coast

Disclosure statement

Sarah Kanake received funding from the Australian Post-graduate Awards to research representations of Down syndrome in fiction.

University of the Sunshine Coast provides funding as a member of The Conversation AU.

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In 2014 I was asked, by my then university, to present in a jovial end of year debate. My partner, brother and a few of my close friends came to watch. The auditorium was packed. There were university bigwigs on both teams. I was pretty nervous. It went well, although many of the debaters thought they were presenting in a real debate and the rest (myself included) had only prepared jokes.

At the end there was a question and answer section. Some members of the audience asked jokey questions relating to our topic. The university bigwigs answered them. Everyone laughed.

Then my brother stood up and asked why there were no intellectually disabled people on the panel, or as students, or as lecturers. He asked why there were hardly any people with Down syndrome in books, or songs, or plays, or movies. All the art forms we taught and sought to understand at the university.

The auditorium fell silent. Maybe because of the question, but probably because my brother has Down syndrome.

One of the university bigwigs stood up, cleared his throat, and gave as sensitive a response as he could. “Integration and representation are important issues but this is a forum for levity,” he said, “and your question is not one to be laughed at.”

My brother sat down. His question went unanswered.

When the debate was over my brother and I had the first real fight we’d ever had. I said he was a grandstander and an attention hog and that these were the people who could give me a job (or not) when I finished my PhD. Why did he have to ask that question, I asked. Why couldn’t he just shut up. Why couldn’t he just fit in? I said all the stuff I had never said before and had never even allowed myself to think.

Afterwards, I felt terrible and apologised. My brother said it was okay and that he was sorry too. We got over it.

But his question remained unanswered.

If integration and representation were important issues, like the university bigwig had said, why had no one tried to answer my brother’s question?

Maybe because as Leonard Davis wrote in his 2002 book Bending Over Backwards there’s,

a strange and really unaccountable silence when the issue of disability is raised (or, more to the point, never raised)… the concept of disability has been relegated to a sideshow, a freak show at that, far away from the academic midway of progressive ideas and concerns.

The thing is, I still can’t answer all the questions my brother asked that day.

I don’t know why there is such a culture of low expectation towards people with Down syndrome specifically. I don’t know why those expectations feed into our cultural understanding of what people with Down syndrome achieve, especially when so many of us have lived experience that says otherwise.

I don’t know why there were no students, or lecturers with Down syndrome at my university that day. But, after five years of research and study, I can answer why there are very few representations of Down syndrome in narrative fiction.

So, my brother Charlie, pretend I didn’t yell at you that day after the debate. Pretend I said this instead…

In 2012, the Global Down Syndrome Foundation stated that 38% of the population knew someone with Down syndrome .

In 2013, the National Dissemination Centre for Children with Disabilities said that :

Nearly 5,000 babies are born with Down syndrome in the United States each year. This means that 1 in every 733 babies is born with this condition.

But, despite this lived experience, there is still a crisis of representation around Down syndrome, particularly in narrative fiction.

Characters with Down syndrome are extremely uncommon, narrators with diagnosed Down syndrome are few, and sole narrators with Down syndrome are basically non-existent.

Why? After all, readers don’t just respond to novels with characters who have Down syndrome, they devour them. Novels like The Memory Keeper’s Daughter (2005) by Kim Edwards and Jewel (1991) by Brett Lott have sold millions of copies. Having said that, only a certain type of adult novel about Down syndrome is popular.

The Down ‘S’yndrome Novel.

The Down Syndrome Novel refers to a novel that builds the scaffolding of plot and story around the inclusion of a character with Down syndrome, making this character necessary for the plot. If you remove the character with Down syndrome (or their disability) from the narrative, the plot caves in.

I coined the term Down Syndrome Novel in my PhD thesis in order to discuss the style of narrative where Down syndrome is included. I refer to these narratives as Down Syndrome Novels in order to reflect importance of the syndrome within the narrative structure.

Thus, I also chose to eschew the contemporary lower case ‘s’ for the more traditional (and now almost obsolete) upper case ’S’ in order to immediately identify the otherness central to these novels. This is not to criticise the Down Syndrome Novel, but rather to present a line of difference between depictions of Down syndrome and those novels where Down syndrome is indispensable to the plot.

Building the syndrome into the plot is the most important element in the Down Syndrome Novel, and also the most limiting aspect for the character with Down syndrome.

Why? Because the Down Syndrome Novel is rarely (if ever) told through the perspective of a person with a disability: they are largely told by parents.

In telling the novel through the parent’s point of view the novel often presents the disabled character as an unexpected, and often unwanted, presence.

Whether this is as a child in the parental narrative, the forced friendship/sibling relationship, or a persistent (often sexual) threat, these narratives rely on archetypes of Down syndrome to form the spine of the narrative and these archetypes almost always exist somewhere on the polarised spectrum between monstrous and angelic.

The Down Syndrome Novel centres around disability and almost universally presents the character with Down syndrome as a problem within the narrative that the narrator must learn to overcome. This movement towards acceptance is the character arc, narrative problem and eventually, the plot. In creating, and thus remaining, within these character definitions the author builds clear and impenetrable boundaries around the disabled character, and the novel including a character with Down syndrome becomes a novel almost exclusively about Down syndrome.

Having said that, the Down Syndrome Novel tries. It tries really hard to create an environment of social diversity and change.

In fact, in seeking to become a dynamic force in social change, the Down Syndrome Novel often traps its hero beneath an avalanche of narrative expectation. Often the only way to remove this expectation is for the character to become incidental to the plot. Just a character in a story, not necessarily about Down syndrome, disability or social stigma and inclusion.

However, being “incidental” to the plot carries its own difficulties and silences. The incidental character with Down syndrome may be freer within the narrative, but this character will never be free to tell their own story.

Mitchell and Snyder discuss this gap in their book Narrative Prosthesis (2000):

The marginality of disabled people has occurred in the midst of the perpetual circulation of images of disability.

The marginalisation of the character with Down syndrome in narrative fiction is not about appearing in a novel, but having a voice and agency within the narrative. When writing about the intellectually disabled, few authors have situated themselves comfortably between the content of a character’s experience and the style necessary to accommodate difference.

Angel or monster

Representations of characters with Down syndrome have historically fallen into two polarised categories – angel and monster – with few transcending the boundaries to become fully realised characters with their own autonomous voice.

This lack of freedom in voice is generally connected to the fear of the character with Down syndrome and their inclusion into the world, even an imagined world.

Fear, of the body growing into adulthood while the mind stays behind in childhood [sic]. Fear, of how the first-person voice of a character with Down syndrome might change the landscape of the modern narrative, and perhaps even fear that the character with Down syndrome will transgress all normative boundaries.

These fears, felt and expressed by the writer, narrator and reader, are all ingrained in this lack of voice. These elements, when combined, create a culture of low expectation of the character with Down syndrome within the narrative.

The disabled character is often used to illustrate and embody a theme that exists outside their interior world. In her paper Depictions of Intellectual Disability in Fiction (2007) Anupama Iyer, consultant psychiatrist in adolescent developmental disabilities for St Andrew’s Healthcare, discussed this connection.

“A character with an intellectual disability [is] a silent Rorschach ink blot onto which society projects its devices and desires.”

In an interview regarding his particular interest in intellectual disability auhtor Mark Haddon supported this statement when he said:

“For me, disability is a way of getting some extremity, some kind of very difficult situation, that throws an interesting light on people”.

Here, Haddon identifies that disability is the key he uses to create conflict, and he isn’t the only one. In fact, most Down Syndrome novels use disability to create the central narrative conflict and, while these novels have clearly good intentions, this conflict only serves to distance the character even further from the reader. It makes Down syndrome “other”.

Most characters with Down syndrome, particularly within the Down Syndrome novel, are heterosexuals from white, middle-class (although often the families fall on hard times) multiple-children families. They are heavily normalised by the author and a narrative voice outside their intellectual disability but, as an intellectually disabled “Other”, characters with Down syndrome are sometimes capable of stretching their own limits using the vehicle of their disability.

In William Faulkner’s The Sound and the Fury (1929) Benjamin’s behaviour is heavily normalised by his family, particularly his sister Caddy. Benjamin - who has an unidentified severe intellectual disability - is admonished and condemned but any strangeness or disturbance in his behaviour is expected. He can use his disability for attention, and affection, and this is why, when he forces his hand through the fence, he unable to understand the terror and disgust he finds there.

While Benjamin is not capable of moving beyond the property borders unpunished, it is still possible for a character with Down syndrome to find freedom in traversing the boundaries of normative behaviour.

Dissolving boundaries

In my Gothic Tasmanian novel Sing Fox to Me (2016) I was extremely conscious of representing and dissolving boundaries around my protagonist with Down syndrome, Samson Fox, in order to create a narrative where Samson was free to move, evolve and change.

Because, just as a person with an intellectual disability has the right to be a “significant member of society”, so does a character with Down syndrome have a right to a belonging within the story that does not build them into the scaffolding of the narrative.

In her book Greater Expectations (2010) disability researcher Jan Gothard writes:

Inclusion means more than simply having people with disabilities in mainstream classrooms and workplaces. It’s about the state of mind which sees people with disabilities accepted as valued, significant and worthwhile members of society: people who have every right to belong.

When I started writing Sing Fox to Me, I wanted to understand why characters with Down syndrome didn’t seem to match up with the lived experiences expressed in books like Jan Gothard’s Greater Expectations or my own lived experience.

What I discovered is that the world both within and outside the novel is still struggling to understand the limits and expectations of Down syndrome.

Down syndrome is still something of a mystery because it is largely represented through archetypes, and images folded down through literature. There is in fiction, as there is in life, a culture of low expectation.

Ultimately, I do not expect to fill the gap in representations of Down syndrome within narrative fiction – no single author could – and my novel was certainly never intended to be the final word on how characters with Down syndrome could function within the novel.

After all, the novel is forever changing, and my hope is that characters with Down syndrome will diversify and change with it. My character with DS, Samson Fox, can be part of this change but he can’t carry the full weight of his disability. Samson can only tell one fictional story. He is only one voice in a symphony of what could be thousands, maybe even 1 in every 733.

I started questioning depictions of Down syndrome in fiction and writing Sing Fox to Me with the express purpose of changing something.

I wanted to change the world inside my library. I wanted to open a book and see a character with Down syndrome. I wanted to hear his voice and see inside his head. I wanted to know what he thought.

However, once the novel was finished and printed, I realised that what I really wanted to change was me. I wanted to be able to write about something I had yet to see in fiction, but I also wanted to show other authors that they could have higher expectations of characters with Down syndrome.

I wanted, as Foucault once said , to write a “book so that other books are possible, not necessarily written by me”.

My brother, Charlie, what do you think? Does this answer (at least part of) the question you asked that day at my university debate?

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Home — Essay Samples — Nursing & Health — Other Diseases & Conditions — Down Syndrome

Essay Examples on Down Syndrome

Down syndrome essay topics and outline examples, essay title 1: embracing diversity: understanding down syndrome, its causes, and challenges.

Thesis Statement: This essay aims to provide a comprehensive understanding of Down syndrome, including its genetic causes, associated health challenges, and the importance of inclusion and support for individuals with Down syndrome.

Introduction
Defining Down Syndrome: An Overview of Trisomy 21
Genetic Causes: Understanding the Extra Chromosome 21
Health Challenges: Physical and Intellectual Characteristics of Down Syndrome
Early Intervention and Education: Strategies for Optimal Development
Inclusive Society: The Importance of Acceptance and Equal Opportunities
Supportive Networks: Families, Advocacy Groups, and Healthcare
Conclusion: Celebrating the Abilities and Contributions of Individuals with Down Syndrome

Essay Title 2: Breaking Stereotypes: Achievements, Success Stories, and Opportunities for People with Down Syndrome

Thesis Statement: This essay explores the accomplishments and potential of individuals with Down syndrome, highlighting success stories, educational achievements, and the broader societal impact of challenging stereotypes.

Historical Perspectives: Changing Attitudes Towards Down Syndrome
Education and Employment: Navigating Opportunities and Challenges
Success Stories: Remarkable Achievements of Individuals with Down Syndrome
Fostering Independence: Life Skills and Empowerment Programs
Family Perspectives: The Role of Supportive Parents and Siblings
Changing Perceptions: The Impact of Advocacy and Awareness Campaigns
Conclusion: Redefining What's Possible for People with Down Syndrome

Essay Title 3: Advances in Down Syndrome Research: Genetics, Therapies, and Future Prospects

Thesis Statement: This essay delves into the realm of Down syndrome research, highlighting recent developments in genetics, therapeutic approaches, and the potential future directions that hold promise for improving the quality of life for individuals with Down syndrome.

Genetic Insights: Discoveries in Trisomy 21 Research
Therapeutic Strategies: Speech, Occupational, and Physical Therapies
Cognitive Development: Enhancing Learning and Communication
Early Intervention: The Importance of Early Diagnosis and Support
Future Directions: Emerging Technologies and Innovative Research Areas
Global Collaboration: International Efforts to Improve Down Syndrome Care
Conclusion: The Promising Path Towards Enhanced Quality of Life for Individuals with Down Syndrome

The Causes and Physical and Mental Effects of Down Syndrome

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Choosing Life With Down Syndrome

After prenatal testing shows a fetus is at risk, families are faced with a profound decision. the national abortion debate is making it even harder on them..

Celeste Blau’s first pregnancy was smooth from the beginning. She stayed active and kept working at the gelato shop she owns with her family outside of Cleveland. She wasn’t ignoring the pregnancy, exactly—it was planned—but she didn’t think of herself as a very maternal person, and pregnancy seemed like something to endure rather than to enjoy. At her first ultrasound, she was mostly excited to find out whether she was having a boy or a girl. She was 31, relatively young, and it didn’t occur to her that anything could be wrong.

The ultrasound appointment at the Cleveland Clinic took three hours. She only realized that was unusual a few years later, when she was pregnant again and the same process took 30 minutes. Lying on the table, her belly smeared with gel, she started to feel a niggling fear when the technicians weren’t laughing at her and her husband’s jokes. (“And we’re funny!” she said.) Afterward, the doctor asked to speak to them in his office. He was concerned because the baby’s brain ventricles looked enlarged, Blau recalls, and he scheduled her right away for an MRI, a chromosomal blood test, and meetings with a pediatric neurologist and a geneticist.

Initially, the results were reassuring. The MRI looked good, and the geneticist saw no cause for concern. To celebrate, Blau and her husband drove to an Italian restaurant nearby for lunch, an old family spot where her grandparents and parents had gathered countless times over the years. They were in the parking lot when the geneticist called back. In fact, she said, there was an issue: The baby was likely to have Down syndrome. Now they just had to decide what to do.

Down syndrome is the most common chromosomal disorder in America, affecting about 1 in 800 births in recent years. People with the syndrome, also known as trisomy 21, have a range of intellectual disabilities, a higher likelihood of heart problems, and physical markers including small stature, upwardly slanted eyelids, and a distinctive crease across the palm of the hand. Prenatal screening for Down syndrome has been available since the 1970s, but until recently, the only methods were invasive procedures like amniocentesis that carry a risk of spontaneous abortion. All this changed with the advent of a simple blood test—the kind Blau took—that became available in the early 2010s. “Cell-free” DNA screenings analyze traces of fetal DNA that circulate in the mother’s own bloodstream. The test is relatively painless and can be performed weeks earlier in the pregnancy than amniocentesis. And these developments in prenatal testing have already had profound consequences for the debate over abortion.

In many parts of Europe, including the United Kingdom, the termination rate after a prenatal Down syndrome diagnosis is now more than 90 percent. In Iceland, where testing is widespread, “we have basically eradicated, almost, Down syndrome from our society,” one geneticist told CBS last year . In Denmark, where all pregnant women have been offered screening scans since 2004, the disorder is heading for “ extinction .” In Ireland, one of the few Western European countries where it is still commonplace to encounter people with disabilities like Down syndrome, citizens voted overwhelmingly on Friday to reverse the country’s strict constitutional restrictions on abortion. Down syndrome had become a contentious element in the public debate. A billboard from the “Save the 8th” campaign , which favored maintaining restrictions, featured a boy with Down syndrome and the tagline, “Abortion discriminates.” One mother of a 10-year-old with Down syndrome told a reporter that she worries her son’s community is “being wiped off the face of the Earth with abortion.” The stakes of this debate are clear: It’s a conversation not just about prenatal testing but about personhood, about whether Down syndrome should be considered a condition or a disease.

In the United States, screening is not as widespread, but about three-quarters of women who do receive a prenatal diagnosis of Down syndrome terminate the pregnancy, according to a survey of recent studies published in 2012. Data suggest that the number of Down syndrome births in the U.S. would be about one-third times higher today if it weren’t for prenatal testing. Though not widely discussed in public, the default assumption in certain milieus is that aborting after a Down syndrome diagnosis is now the natural and obvious thing to do. Introduction to this option is, after all, a primary purpose of prenatal testing. In several recent op-ed s in the Washington Post, Ruth Marcus articulated the view of the “ silenced majority ” of women who would have aborted a fetus with Down syndrome if prenatal tests had come back positive: “That was not the child I wanted. That was not the choice I would have made,” she wrote. “You can call me selfish, or worse, but I am in good company. The evidence is clear that most women confronted with the same unhappy alternative would make the same decision.”

It feels inevitable that Down syndrome would have become a flashpoint in the national abortion debate. And, given the recent inroads made by anti-abortion activists, most of the legal battles are taking place at the state level. Over the past several years, Republican legislators have introduced a series of state laws that would restrict access to abortion in cases of Down syndrome. North Dakota’s legislation went into effect in 2013, and the Pennsylvania House passed a bill in April . Legislators in Illinois , Kentucky, and Utah have debated similar bills this year. In January, a Utah state representative called her bill “Utah’s message to the world that we will not tolerate discrimination.” In Ohio, where Blau lives, governor and 2020 presidential hopeful John Kasich signed a law in December that would criminalize the procedure in cases where the doctor knows that the patient believes the fetus has Down syndrome.

Ohio’s law would make it a felony for a doctor to perform an abortion if he has reason to believe that the woman is seeking the procedure “in whole or in part” because the woman believes the fetus has Down syndrome. It “would be the most extreme abortion ban in the country,” said Gabriel Mann, communications manager for NARAL Pro-Choice Ohio, “because it could be applied in every single case just based on the thoughts of the patient.” Theoretically, he said, a patient could be issued a subpoena to testify in court about her reasons for seeking the procedure. In Blau’s case, such legislation would have made it essentially impossible to get an abortion after getting the results from the geneticist—simply because of what she now knew.

From the perspective of the Down syndrome community, a diagnosis should be the start, not the end, of a family’s understanding of what life is like with trisomy 21—whether termination is being considered or not. The community is diverse, with the usual spectrum of political and religious views on abortion. Many Down syndrome parent groups have gone out of their way to avoid taking a stance on anti-abortion legislation like Ohio’s because the bills are so divisive. Other parents are alarmed at the prospect of not being able to decide the fate of a pregnancy for themselves. It’s understandable that a parent of a child with Down syndrome might feel that the opportunity to abort makes it more likely that people would miss out on an experience they have found deeply rewarding. It’s also easy to be firmly pro-choice, and also unsettled by the termination numbers and the language of eradication. And then there are parents who didn’t receive a Down syndrome diagnosis until their children were born and must quietly grapple with the question of what they would have done had they known earlier.

Sitting in the car outside the Italian restaurant in Cleveland, Blau felt as though the wind had been knocked out of her. Eventually, she and her husband went inside, where they ate almost in silence and then drove home. She remembers her initial fears, which she feels guilty about now: Would they ever travel again? Was she “wasting” a good name on this baby? Would the little girl be cute? Another thought flickered at the edge of her mind: “You don’t have to go through with this.”

Blau’s screening came relatively late, around 20 weeks. She hardly received any concrete information from the hospital about Down syndrome, she recalls. But she read a guidebook about parenting a baby with the disorder, and that helped. A teenage family friend had Down syndrome, so she was vaguely aware of what her daughter might be capable of. It surprised her husband, who she says never wanted to consider abortion, to find out that their daughter would likely be able to read, for example. (“I don’t know that they’re reading the Iliad or Anna Karenina , but I’m not either,” she said.) The hospital assigned the couple a support person to help them navigate the system, and she gave them a printout of a short inspirational essay written in 1987 by the mother of a child with Down syndrome. The popular essay compares preparing for a baby to preparing for a trip to Italy. After months of anticipation, you land, and the flight attendant announces: “ Welcome to Holland .” It’s not worse, the essay concludes. It’s just different.

For many people in the Down syndrome community, the problem is not that abortion is available. Rather, it’s that prospective parents are given such paltry, dour, and often inaccurate information at the point of diagnosis, whether that happens prenatally or at birth—information that should be available to anyone regardless of their abortion views. “We’ve found that families who have a really traumatic diagnosis experience, it takes them longer to come to a place of acceptance,” said Heather Bradley, the president of the board of the Down Syndrome Diagnosis Network, a nonprofit that provides support and information to parents. She counseled one family in 2011 who received an informational booklet from the 1980s using the outdated slur mongoloid , and another shaken recently when a nurse attending the birth cried and said, “Your baby has ‘the Down’s,’ ” also an outdated and offensive term.

More frequently, parents who get a diagnosis of Down syndrome receive no information about local support groups and social services, and hear no voices of parents who can share experiences of life with a disabled child. Many parents report feeling badgered into getting an abortion and judged if they decline to do so. Yami Johnson, a Brooklyn mother grappling with a prenatal diagnosis last year, said one doctor sat down with her and her husband and asked them how many children they already had. “Is this the legacy you want to leave them?” Johnson recalled the doctor asking. “You’re not going to live forever.” (She gave birth to her son, Noah, in January.)

Even in the best of circumstances, the conversation is a high-wire act for doctors, especially with early tests that indicate a likelihood but no certainty. “Calling someone is really complicated because I don’t have a diagnosis, I have a tiny grenade in my hand and we have to decide what do next,” said Chavi Eve Karkowsky, a maternal-fetal medicine specialist (and occasional Slate contributor ). As the diagnosis unfolds, the doctor may have to address complex medical prognoses, cultural values, family dynamics, further testing, and sometimes even the mathematics of probability with a woman who may still be in shock or denial. Early blood tests are nondiagnostic and reveal only a fetus’s probability of various disorders; the results can be confusing for almost anyone. “It becomes hard to give people useful information,” Karkowsky said. “It often becomes a conversation about, ‘How worried should I be? What would you do?’ ” The doctor must also make clear that decisions about termination must happen within a specific, often narrow, window of time in order to be legal—and attempt to do so without pressuring the woman into choosing that course.

Some disability activists have promoted another kind of legislation that could affect women’s decisions in the wake of a prenatal diagnosis: “Pro-information” laws require doctors and genetic counselors to provide what advocates call a more “balanced” portrait of the disability at the point of diagnosis. Some pro-information advocates believe that if they could just give prospective parents a true picture of life with a Down syndrome child, more women would choose to go forward with their pregnancies. In many ways, they argue, there has never been a better time in history to have Down syndrome, or to have a child with the condition. The life expectancy of a baby born with Down syndrome is almost 60 today, compared with 12 in 1949, and children are regularly incorporated into mainstream classrooms. Cultural visibility is now high, too, between the 2018 Gerber baby , the A&E reality show Born This Way , and American Idol .

Since 2012, about 20 states have passed laws that require or encourage medical providers to supply patients with approved fact sheets and contact information for local support services. The legislation has historically garnered unified support from pro-life, pro-choice, and disability-rights groups. But the rise of anti-abortion bills like Ohio’s has slowed the progress of the pro-information movement over the past few years.

The Ohio law, needless to say, would not have helped Blau get the guidance and context she missed out on. She knows many parents who got information from their doctors that was far more blatantly inaccurate than what she received, and she supports measures that would correct that. “You shouldn’t be hearing from your doctors that your kid’s not going to walk and talk,” she said. She wonders if some activists who favor anti-choice legislation over pro-information laws aren’t very familiar with Down syndrome themselves. “They’re worried that if the doctor shares facts, it would push [the woman] to abortion,” she said. “But I feel like if people had facts, they would realize it’s not that big of a deal.”

Pro-information federal legislation passed in 2008 , but many advocates have found that law disappointingly toothless, since it provided no funding for new materials. And the new state laws have splintered the fragile alliance between the disability-rights and pro-life communities, as the latter have focused their energy on prohibition rather than persuasion.

In other words, today’s pro-life legislators and activists are now bent on effectively removing choice after a prenatal diagnosis, rather than on influencing that choice. “We were making strides on the pro-information movement on a bipartisan basis, and the anti-choice movement decided to make it partisan,” said David Perry, a progressive writer and the father of an 11-year-old with the condition. “The pro-information movement, as near as I can tell, is dead.”

The shift from pro-information to anti-abortion has happened partly because disability-rights activists have less political power than the pro-life movement. They also have the more complicated argument to make: that bodily autonomy and justice for the disabled are inextricably intertwined—even if the right to choose abortion might appear on the surface to be at cross-purposes with disability advocacy. “We don’t have a good pro-choice, anti-eugenic rhetoric in this country,” Perry said. “People like me … have to find a way of talking about this.”

Of course, mandating “information” would not be a magic fix for an extremely knotty issue. Arthur Caplan, a bioethicist who has been tracking the impact of prenatal genetic testing since the early 2010s, doesn’t believe that the information delivered along with a prenatal diagnosis can really reverse the obvious trend line toward earlier and easier identification of an ever-widening spectrum of conditions, from cleft palates and cystic fibrosis to, perhaps someday, autism . Pro-information legislation wouldn’t “get far in knocking down the high termination rate,” he said. “And more tests are coming.”

Some also say the pro-information approach violates the core norm of neutrality in the field of genetic counseling. “It’s hard to describe how big the burden of history is for genetics,” Caplan said. This is science, after all, that has been used to promote involuntary sterilizations, bans on interracial marriages, and Nazi eugenics. “People in the [Down syndrome parent] community like to say geneticists are not our friends,” said Holly Christensen, a parenting columnist for the Akron Beacon Journal and the mother of a 5-year-old girl with Down syndrome. She herself opted for a second-trimester screening method that came back with inconclusive results; her daughter was diagnosed after birth. While she has written critically about the Ohio abortion ban, she also remains wary of what might happen the more we’re able to find out about a baby’s characteristics before it comes to term. “As a society,” she said, “we’re starting to really have a conversation about what it means to be human.”

But for many in the disability community, it’s also hard not to feel troubled by the direction in which legislators are pushing this debate. Banning selective abortion would do nothing to ease the bias that leads to the selective abortion—and could even reinforce it. Because many of the anti-abortion state laws punish doctors who can be proven to know their patient’s mindset, it’s not farfetched to imagine that these laws could actively discourage doctors from sharing information—effectively letting women believe that the outcome for children with Down syndrome is even more dire than it is. With the strict anti-abortion bills, “the underlying assumption is that unless people are legally prohibited from aborting fetuses [with] disabilities, they will inevitably do so,” said Shain Neumeier, an autistic activist and attorney in Massachusetts who has argued that the disability-rights community must be pro-choice . “Unstated is the idea that people will always have these biases, and there’s nothing you can do about it short of legal force.”

Celeste Blau gave birth to her daughter, Clementine, on May 22, 2016. The end of the pregnancy was as smooth as the beginning, though Blau couldn’t wait for it to end: “Let’s meet her and get started on this,” she recalls thinking. Clementine is a little behind her peers developmentally, but she has none of the major health problems often associated with Down syndrome, and at 2 years of age, she seems to be on the verge of walking. Blau’s mother retired when Blau was pregnant, and these days she watches the toddler and her infant brother, Finneas, at the gelato shop where Blau works. Blau also has support from a center for Down syndrome families that recently opened near her home and a tightknit online group she met through the Down Syndrome Diagnosis Network.

Blau believes abortion is a personal choice. But she says she wants to “puke” when she thinks about how abortion crossed her mind after the diagnosis. She knows mothers who admit they would have terminated if they had received a diagnosis in time, and now they say they’re glad they didn’t. She thought about getting tested with her second pregnancy just out of curiosity, but when she found out it wasn’t covered by her insurance, she moved on.

Recently, Blau and her husband made plans to go back to the Italian restaurant where they first got the news about Clementine’s screening results. The whole family is coming, she said, this time to celebrate the birth of her son. “We’re happy,” she said. “Our life is really good.”

Correction, May 31, 2018: Due to a production error, a photo caption misidentified Celeste Blau’s son, Finneas, as Noah.

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The Impact Of Down Syndrome On The Individual And Their Family

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