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21 Things People Don’t Get About Kids With Down Syndrome

Down-syndrome-awarenessIn honor of Down Syndrome Awareness Month, I decided to ask parents of kids with Down syndrome about the stuff people just don’t get about their kids. There are so many misconceptions, misunderstandings and flat-out mistakes about children with DS, and just what having three copies of the 21st chromosome means. Things can be especially challenging when kids are little-little and in that stage where parents are constantly comparing milestones.

“One of the things people don’t get about kids with Down syndrome is that what may seem like a small milestone for other kids is a big deal to us,” says Rick Smith of Noah’s Dad, whose community also shared their thoughts. (That’s Noah at left.) “Noah has been going to speech, physical, and occupational therapy since he was 3 weeks old (he’ll be three in December) and he has worked very hard on developmental milestonestones that can come easily for typical children like rolling over, crawling, sitting up, holding and drinking from a bottle, walking and speech. We celebrate each of his milestones like he just won a gold medal in the Olympics because we’ve seen firsthand how hard he had to work to achieve it. So if you see us out at the mall cheering wildly at how well he is walking, just know we are cheering ten times as loud on the inside. We love our little boy and celebrate all of his hard work as often as we can!”

It’s a sentiment many parents of a child with special needs can relate to; my son, Max, has cerebral palsy, but he is similarly full of determination that’s worth cheering about. Check out 20 responses and stunning photos from other parents of kids with DS, all of whom couldn’t be more proud of their kids—and eager to let the world know just how much they rock.

  • Kids with Down syndrome have indie spirits 1 of 19
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    "Evie has always blown us away with her indpendent spirit. One of the first words she ever uttered was 'Self!!!' and she meant it. Lord help me, she still does. There are no limits to her achievements, I watch her determined little face and I am in awe. She has climbed more mountains in her little life than most people and I am so happy that I was chosen to see her climb many more."—Jeannie B., mom to Evie, 3

  • Kids with Down syndrome are as beautiful as any child 2 of 19
    down-syndrome-awareness-photo-2

    "I was recently stopped and asked if my little boy had Down syndrome. I said, 'Yes!' The person said, 'Well, he's still beautiful.' I answered with, 'Well, of course he is!' I think some people don't understand that God created all people and that we are all beautiful, regardless of our skin color, our facial characteristics, our personalities or our abilities."—Lindley, mom to Way, 14 months

  • Down syndrome is not a "sickness" 3 of 19
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    "I really dislike the ignorance of people who assume just because a child has Down syndrome, they think they are sick! When I tell some people that Peter has Down syndrome, they automatically say 'Oh, I am sorry. It must be hard to raise a sick child!' Number 1, having Down syndrome does not mean you are sick. Thank God, my son is a healthy 8-year-old. Number 2, I am not 'sorry' he has Down syndrome, I wouldn't change a thing about him."—Carolyn B., mom to Peter, 8

  • Kids with Down syndrome are on nobody’s timeline, except their own 4 of 19
    down-syndrome-awareness-photo-4

    "What my daughter would want people to know: 'I'll do as you do... but at my own pace.'"—LoriAnn G., mom to Adrienne, 13 months

  • Kids with Down syndrome have plenty of smarts 5 of 19
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    "People don't seem to realize how smart kids with Down syndrome are. My son is VERY intelligent, even though he can't express it as well as a typical child his age. People ask if he will talk, but they just need to listen and observe him and they will know that he 'talks.'"—Grace, mom to Seth, 20 months old

  • Kids with Down syndrome are not tragedies 6 of 19
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    "The diagnosis can be terrifying.... The actuality is THE most joyful and enriching experience. You feel honored and truly grateful and blessed to be a part of this child's life."—Tara, mom to Tiana, 3

  • Kids with Down syndrome are achievers 7 of 19
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    "I'll never forget the comment I got from a friend when I told her Ethan had Down syndrome: 'Well, you have one son who will grow up and move away and one son who will live with you forever.' My response? 'No, I have two sons who will grow up and be independent.' I never once saw Ethan as unable to do anything his brothers or anybody else could do, as long as that was what he wanted to do."—Ellen C., mom to Ethan, 5

  • Give parents a break on the Down syndrome stereotypes, part 1 8 of 19
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    "One of the funiest things I hear is that kids with Down syndrome are all stubborn. Really??? Maybe they are stubborn because their mom and dad are! All kids can be stubborn and yes, my diva Lexi has the best of her mom and dad's subbornness!"—Roxi B., mom to Alexis, 4

  • Kids with Down syndrome spread a whole lot of joy 9 of 19
    down-syndrome-awareness-photo-9

    "I'll never forget one particular day I took my son to the grocery store. As usual, he was smiling and waving at the other shoppers as we passed them by. In aisle 5: a mean, gruff, unpproachable-looking man. Silently, I hoped my son would pick up on these vibes and take a temporary hiatus from his usual greetings. As our cart rolled past, Kyden began waving extra-enthusiastically and even shouting 'Hi!' Not immediately, but after several of Kyden's acknowledgments, the man looked up and smiled warmly. His eyes even seemed to be a bit watery as he greeted Kyden in return. Suddenly, I felt compelled to offer a kind 'Hello' to this man as well. I couldn't help but wonder if Kyden's greeting had been the only one which that man had received in quite some time. I realized that I was placing limits on my kindness, limits which Kyden didn't seem to possess. My son had taught me an invaluable lesson about widening my perspectives, which is exactly what I advocate for on a regular basis for Kyden. Having an open mind and a heart of acceptance must go both ways."—Holly H., mom to Kyden, 6

  • Kids with Down syndrome are kids first 10 of 19
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    "Mae does absolutely everything her peers do, and is by far my best child. (Don't tell her siblings I said that!)"—Julie K., mom to Mae, 18 months old

  • Kids with Down syndrome are not all alike 11 of 19
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    "People with Down syndrome have their own personalities."—Guillermina, mom to Agostina, 10 months old

  • Kids with Down syndrome don’t need your pity 12 of 19
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    "People don't get how proud I am of my little guy. How he makes every day of my life so much brighter. Occasionally, when we will be walking down the street, I will feel people's eyes on us. And they give us looks filled with pity. I want to shout at them, 'Don't pity me, he is my child, he is my joy, and I love him like any mother would love their child.' I wish people would take time to get to know him, and not be frightened by his differences."—Jenny R., mom to James, 4

  • Parents don’t need your pity, either 13 of 19
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    "People have often said to me, 'I don't know how you do it!' I find that a little weird; parenting is difficult regardless of a child's ability. Would you say that ot me about my son without D.S.? Being a parent to a child with Down syndrome has been the most rewarding and awe-inspiring part of my life! I feel priviliged, not burdened."—Theresa D., mom to Grace, 3

  • Parents of kids with Down syndrome take pride in their genetics 14 of 19
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    "People don't know that when they tell you 'Oh, he looks just like you!' it's the best feeling in the world. I've never once wished John did not have Down syndrome, I kind of wish everyone else did have Down syndrome."—Phaedra D., mom to John, 2

  • Kids with Down syndrome are superhero material 15 of 19
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    "People don't get that having Down syndrome does not steal your individuality. We DO all want to be superheroes, rights?"—Renee P., mom to Grayson, 6

  • Give parents a break on the Down syndrome stereotypes, part 2 16 of 19
    down-syndrome-awareness-photo-15

    "My son and others with Down syndrome are not just flat-happy people. In fact, as a new parent that thought horrified me. People with Down syndrome are as complex and socially aware as any one of us. I have now had the privilege to meet individuals with Down syndrome who embody such a variety of personalities: the grumpy old man, the defiant teen, the shy tween, the mischievous sister...and with everyone I meet I'm not disappointed to find they are just like you and me."—Mel A., mom to Samuel, 2

  • Kids with Down syndrome are full of potential 17 of 19
    down-syndrome-awareness-photo-17

    "All children are limitless, if we encourage them to achieve their true potential. We found out several months before Lila was born that she had a heart defect and that lead to a prediagnosis of Downs. She has undergone five surgeries, including open heart surgery, but she is beating every odd and expectation—and she does it with a smile and a zest for life that we all should have.... Her purpose in life is large."—Padgett M., mom to Lila, 2

  • Parents of kids with Down syndrome give as much love as any parents 18 of 19
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    "She is the gift you never thought you wanted, but then realize you could never live without."—Julie B., mom to Phoebe, 8 

  • Kids with Down syndrome are not defined by DS 19 of 19
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    "The triplication of the 21st chromosome contains less than 1 percent of Mack's genetic instructions. It should not determine 99 percent of his life, and doesn't drive his capabilities. That extra chromosome absolutely does not mean a lifetime of misery and disappointment. To the contrary! Mack is changing lives and minds on a daily basis. Oh, and his hair? Truly epic."—Michelle S., mom to Mack, 7 months old

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