21 Things To Know About Raising a Child with Down Syndrome


Happy World Down Syndrome Day! Four years ago, this day meant nothing to me and I didn’t even understand what Down syndrome really was, but today, I celebrate!

World Down Syndrome Day


Life with Down syndrome is nothing like what most people think. It’s actually surprisingly ordinary. After 3 ½ years of raising an amazing human being who is rocking an extra chromosome, we consider ourselves to be seasoned pros!


World Down Syndrome Day


There are 21  important things that I, along with many others in this army of devoted parents, want you to know:

  1. We’re not sorry. PLEASE don’t say “I’m sorry.” We understand it’s a common reaction, but we adore our children and don’t regret having them!
  2. We can do it, and if you were in our shoes, you could, too. People often say, “I couldn’t do it!” but yes, you could. If you were in our shoes, you would quickly adjust and do anything for your child.
  3. Our lives aren’t much different than yours. People often picture life with Down syndrome as being depressing, but in reality, our lives are a lot alike, and not as difficult as you might think. We do the same things that you and your families do!
  4. Down syndrome isn’t “one size fits all.” People with Down syndrome are every bit as unique as any other. They have strengths and weaknesses, and their own physical features. Most don’t have every characteristic or health issue associated with Ds, and many are 100% healthy and only have a few characteristics. It’s very likely you walked by someone with Down syndrome before and never realized it!
  5. We’re not “supermoms” and “superdads.” We’re just good parents doing our best. Parents who have children with special needs are often put on a pedestal. We’re not exceptional parents because we have a child with special needs. We’re exceptional parents because we love and support each of our children.
  6. We love our children every bit as much as any other. Kids are kids and we adore them no matter what. Some people like to tell parents who have younger children with Down syndrome that they won’t love them as much when they’re older, but most of us are lucky enough to know that the love for a child never ends!
  7. Down syndrome isn’t an illness. Down syndrome is the most common genetic condition and it occurs at conception. It cannot be “caught” and it will NEVER go away.
  8. We’re not irresponsible or uneducated. We’re often accused of being irresponsible for bringing our children into the world, but genetic screening is a choice and isn’t fail-proof. Many children (like Liam), slip by with normal tests and ultrasounds, and the condition isn’t discovered until after birth.
  9. We are happy, but life isn’t always rainbows and unicorns. We ARE happy. We feel blessed and thankful, and we adore our children and love our lives. We’re often told we need a reality check because life isn’t all rainbows and unicorns, and that we have a false sense of happiness. It’s as if we’re not allowed to be happy. Sometimes life just plain sucks, but the majority of the time, it’s actually quite beautiful.
  10. We don’t receive money just because we have a child with Down syndrome. Kids don’t receive disability, but they could receive SSI, which is income based and extremely difficult to qualify for. Most parents don’t receive any money and are working hard to support their child with Down syndrome, just like any other parent.
  11. Raising a child with Down syndrome doesn’t cost much more than raising a typical child. It’s a myth that raising a child with Down syndrome is astronomically high. It only costs a little bit more than raising a typical child.
  12. Our marriages are strong and our kids don’t resent their siblings. Down syndrome can often be falsely perceived as ripping apart families. Just like any other family, there are parents who walk away. But studies show that most marriages become stronger after they welcome a child with Down syndrome into the family and that people who have a sibling with Down syndrome love them! Our families are strong!
  13. We have hopes and expectations for their future. We want ALL of our children to live long, happy, fulfilling, healthy lives and we have high expectations!
  14. Our biggest struggle is YOU. Our struggles aren’t within the home. The struggles are within the world around us. Our fight for our children is with YOU.
  15. There isn’t any way to prevent Down syndrome. No prevention technique will stop Down syndrome from occurring and nobody is exempt. It happens at conception, and in most cases, it happens by chance. It happens to every race and economic status, and it can happen at any age.
  16. Our kids are more alike than different and all we want is for our children to be accepted. Our kids are human beings. They eat, sleep, communicate, love, grow, learn and change. It’s 2017 and it’s time to progress. Please treat them like your fellow human beings.
  17. There’s a reason why we use the term “The Lucky Few.” Sometimes the things we don’t want turn out to be the most beautiful. Those who are lucky enough to be “blessed by Down syndrome” understand exactly what it means to be The Lucky Few.
  18. Please use people-first language and don’t use the “r” word. It’s not “Down syndrome baby” or “Downs child.” Use their names or say “person with Down syndrome.” The term “retarded” is outdated and offensive. The majority of health providers no longer use it, and saying that something is “retarded” isn’t okay. There are thousands of other words to describe what you’re trying to say.
  19. We want you to ask questions! Please don’t act uncomfortable or avoid us, because we want you to ask questions and we want to talk about it! That’s how people learn about something they may not understand.
  20. Sometimes we do know more than the experts. We’re living it and we have experience. Our minds are filled with information, thanks to countless hours of research, therapy sessions, medical appointments and IEP meetings. Medical professionals have the knowledge, but rarely have the real life experience, so we are the pros!
  21. Our kids amaze us every single day. Our kids are strong and capable. They CAN.


Today, on World Down Syndrome Day, we hope you’ll join us in celebrating those who are rocking an extra chromosome. We’re wearing our blue and yellow and our crazy socks in honor of the little boy who changed our lives! I hope this inspires you to see the ABILITY instead of the disability, and just give Down syndrome a chance!


You can keep up with Liam and his rockin’ family on Lexie Loo, Lily, Liam & Dylan Too and follow his daily adventures on Instagram!

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Stefanie is a wife and SAHM to 4 children, living in Mars. Stefanie and her husband refer to their children as Phase One (Dylan-Age 13 and Alexandria-Age 10) and Phase Two (Liliana-Age 6 and Liam-Age 4). Phase Three is out of the question! Stefanie’s family became a family blessed with Down syndrome when her youngest child had a surprise diagnosis after his birth. Although the family’s initial reaction was shock and fear, they quickly learned to embrace this beautiful journey and they now realize what the term “The Lucky Few” really means. Stefanie spends her days wrangling chaos. In addition to four kids, her family has 4 large pet rabbits...the more the merrier! In her spare time she loves to embarrass her children by singing show tunes from her musical theater days, come up with messy projects to keep her children busy, chase her children around with her camera, read, volunteer for the Down Syndrome Diagnosis Network, blog at http://www.lexieloolilyliamdylantoo.com and post daily on Instagram (www.instagram.com/lexieloolilyliamdylantoo). Sleep is just a distant memory!


  1. I love this, except with number 8- my son didn’t “slip through the cracks” of screening. We knew before birth he would have Down syndrome. With screening becoming more available, I’m hoping the image of being “irresponsible and uneducated” goes away. I don’t want people assuming we didn’t know before birth, and would have “done something” if we did.

  2. Thanks so much for this article. I have a sibling with downs syndrome. It is a rewarding challenge. Yes people think families are superhuman but its not the case. It is an amazing life 🙂

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