What Parents of Children With Down Syndrome Want You to Know on World Down Syndrome Day
March 21 is a day of celebration in the Down syndrome community: it’s World Down Syndrome Day.
There are three types of Down syndrome:
1. Trisomy 21 (or non-disjunction) is the most common. All cells have three copies of the 21st chromosome (which is why we celebrate on 3/21).
2. Translocation Down syndrome happens when part of chromosome 21 becomes attached (translocated) onto another chromosome. People with translocation Down syndrome have the usual two copies of chromosome 21, but they also have additional material from chromosome 21 attached to the translocated chromosome.
3. Mosaic Down syndrome happens when only some cells have an extra chromosome but other cells in the body are typical.
Down syndrome is the most common chromosomal condition. While there are certain health and developmental issues as a result of the extra chromosome, that is not what defines a person with Down syndrome.
I have a daughter with Down syndrome who is 10 years old. She is the light of my life. There was a time I thought her diagnosis was “scary,” but I have learned our life is brighter and filled with more joy and love because of her.
We reached out to other parents who have children with Down syndrome and asked them what they wish people knew about Down syndrome on this World Down Syndrome Day.
These were their beautiful responses:
1. “I was afraid, too. Afraid a Down syndrome diagnoses meant a lower quality of life for my son. Like most fear, my fear was based on ignorance. The more I learned and the more I experienced, the more that fear was replaced by excitement. There is no reason to think his future will be any less amazing than his first three years have been! Love my little mischief maker to pieces!” — Deena C.
2. “To new parents: It is OK to be scared when you find out. It is OK to grieve what you had thought would be. It’s OK. You are not less of a parent for being sad at finding out this diagnosis. Grieve, and let those feelings go. Make room in your heart for the child you do have and all of the wonderful things that will happen because of them.
To the rest of the world: She has Down syndrome. She is not a ‘Down syndrome child.’ It is a part of her, but it does not define her. Do not define her by it. Let her show you who she is. Right now, she is an adorable, 4-month-old, happy, smiling baby girl with a big brother who adores her.” — Lisa R.
3. “Please do not pity me. Don’t worry about me. My son has made me the most enlightened , kind, empathic and patient version of myself. The only thing we should be doing with people who have Down syndrome is thanking them!” — Beth A.
4. “Down syndrome is not all that scary! People with Down syndrome want the same things as everyone else: the chance to live, to love, to succeed, to be treated as an equal.” — Jon K.
5. “Too much information that prospective parents receive about Down syndrome is either out-of-date, heavily biased or deeply embedded in the medical model of disability. When it comes to Down syndrome, the social model is far more applicable to reality. Much of that information is based upon old studies which used very small samples or were done when it was more common to find people with Down syndrome living in institutions [rather than] thriving in their lives. More importantly, if you want to know what Down syndrome is actually like, ask people who have Down syndrome. Talk to their siblings, their parents. Read about the many achievements of people who have Down syndrome.” — Maxine N.
6. “[Down syndrome] is not at all what I had imagined life to be. Our daughter fills our days with joy and laughter. But she also has all the same emotions her sister without Down syndrome has. She’s capable of anything and everything; she just needs people to believe in her and help her, and she’s succeeded. She’s 4 years old and learning to read. She’s very loved and we’re very blessed!” — Maria M.
7. “It gets better and more rewarding each year. My son with Down syndrome will be turning 40 this year and has helped me know a world that has more to offer than I ever imagined.” — Judy D.
8. “The unknown is always scary. We never know what we are capable of until we are put into a certain situation. The first thing people think of when they hear Down syndrome is disability, struggle and burden. When I look at my daughter I think happiness, strength and independence because that’s what she is. Her milestones may be slightly delayed, which just means it will take a little longer to get there, but she will. She will go to school, graduate and get a job. People with Down syndrome are capable of anything. Never limit them, and never assume anything. You’ll never know what you’re capable of or what they will be capable of if we let fear drive us.” — Marissa H.
9. “[Kids with Down syndrome] are like any other kid, with the same interests! They make you realize what strength you didn’t know you had! And they make you appreciate the little milestones that most parents don’t even think about.” — Esperanza H.
10. “My 4-year-old daughter has the same desires as most of her peers. She longs for friendship, craves sweets and looks for the fun in everything.” — Jennifer H.
11. “Down syndrome is not something to be afraid of. Most likely, your life will be more complete than ever before. My son with Down syndrome is my life teacher, he has taught me to live more in the moment. The joy he gives me is inexplicable. He is my magic little boy. There is magic in that extra chromosome!” — Ana-Luisa G.
12. “Everyone has something to contribute to this world. There is value in all diversity and all abilities.” — Elena B.
13. “This is life with Down Syndrome for us: giggle-filled chases around the house, rainy-day dance parties and the most awesome harmonica playing you’ve ever heard from a 3-year-old!” — Terina R.
14. “You probably don’t know anything about Down syndrome because I didn’t before I was blessed with my awesome baby boy 14 months ago. Many of the things you think you know probably are untrue or outdated. Just please take the time to educate yourself. Please don’t feel sorry for me or my son because I would not have him any other way. Our family is much better with him in it!” — Dan L.
15. “Down syndrome doesn’t equal death sentence! It’s a little scary and it’s a learning curve, but it’s also a beautiful life and so rewarding!” — Jennifer M.
16. “We aren’t suffering. I would be suffering without my son, I know that.” — Erin S.
17. “Every child and adult with Down Syndrome is worthy and able.” — Shannon D.
18. “People with Down syndrome are more alike than different.” — Kelly J.
19. “Stop asking me how my other sons ‘deal with’ having a brother who has Down syndrome. He’s their brother! That’s it! They throw stuff at each other, and wrestle, and fight, and fight people who mess with them, and laugh together, and do crafts together, and plot against Mom together. They’re just brothers. They are not Xavier, Logan, and their ‘Down syndrome brother’ Anthony. They are just brothers. We are just a family.” — Britt S.
20. “All my boys (both with Down syndrome) want is to be like their ‘typical’ peers. To me, inclusion is huge!” — Suzanne M.
21. “Love abounds within the families [of individuals with Down syndrome].” — Lucinda B.
What is one thing you would want people to know about Down syndrome? Let us know in the comments.
Getty image by DGLimages