Article: What's It Like To Have Down Syndrome?

Check out this beautiful article from National Geographic Kids by Melissa Riggio.  I just had to share it with everyone.  Thanks to Sammi's mom for posting it.
 
 I Have Down Syndrome--Know Me Before You Judge Me

http://kids.nationalgeographic.com/kids/stories/peopleplaces/downsyndrome/

When I first started to work on this story, I thought maybe I shouldn’t do it. I thought you might see that I have Down syndrome, and that you wouldn’t like me.

My mom thinks that’s silly. “Have you ever met anyone who didn’t like you because you have Down syndrome?” she asks me. She’s right, of course. (She usually is!)

When people ask me what Down syndrome is, I tell them it’s an extra chromosome. A doctor would tell you the extra chromosome causes an intellectual disability that makes it harder for me to learn things. (For instance, some of my classes are in a “resource room,” where kids with many kinds of learning disabilities are taught at a different pace.)

When my mom first told me I had Down syndrome, I worried that people might think I wasn’t as smart as they were, or that I talked or looked different.

I just want to be like everyone else, so sometimes I wish I could give back the extra chromosome. But having Down syndrome is what makes me “me.” And I’m proud of who I am. I’m a hard worker, a good person, and I care about my friends.

A Lot Like You

Even though I have Down syndrome, my life is a lot like yours. I read books and watch TV. I listen to music with my friends. I’m on the swim team and in chorus at school. I think about the future, like who I’ll marry. And I get along with my sisters—except when they take my CDs without asking!

Some of my classes are with typical kids, and some are with kids with learning disabilities. I have an aide who goes with me to my harder classes, like math and biology. She helps me take notes and gives me tips on how I should study for tests. It really helps, but I also challenge myself to do well. For instance, my goal was to be in a typical English class by 12th grade. That’s exactly what happened this year!

But sometimes it’s hard being with typical kids. For instance, I don’t drive, but a lot of kids in my school do. I don’t know if I’ll ever be able to, and that’s hard to accept.

Dream Job: Singer

I try not to let things like that upset me and just think of all the good things in my life. Like that I’ve published two songs. One of my favorite things to do is write poetry, and this singer my dad knows recorded some of my poems as singles.

Right now someone else is singing my songs, but someday, I want to be the one singing. I know it’s going to happen, because I’ve seen it. One day I looked in the mirror, and I saw someone in my head, a famous person or someone who was somebody, and I just knew: I will be a singer.

It’s true that I don’t learn some things as fast as other people. But that won’t stop me from trying. I just know that if I work really hard and be myself, I can do almost anything.

See Me

But I still have to remind myself all the time that it really is OK to just be myself. Sometimes all I see—all I think other people see—is the outside of me, not the inside. And I really want people to go in there and see what I’m all about.

Maybe that’s why I write poetry—so people can find out who I really am. My poems are all about my feelings: when I hope, when I hurt. I’m not sure where the ideas come from—I just look them up in my head. It’s like I have this gut feeling that comes out of me and onto the paper.

I can’t change that I have Down syndrome, but one thing I would change is how people think of me. I’d tell them: Judge me as a whole person, not just the person you see. Treat me with respect, and accept me for who I am. Most important, just be my friend.

After all, I would do the same for you.

What Is Down Syndrome?

Down syndrome is an intellectual disability that about 5,000 babies in the United States are born with each year. A person with Down syndrome has 47 chromosomes, microscopic structures that carry genetic information to determine almost everything about a person. Most people have only 46 chromosomes. It’s the extra chromosome that can cause certain physical characteristics (such as short stature and an upward slant to the eyes) and speech and developmental delays. Still, people with Down syndrome are a lot like you: They are unique people with strengths and talents.

31 for 21, Day 29: the great story campaign

i love the idea of a place where people can inspire others. at the national down syndrome society there is a place to do just that. it's the "my great story" campaign. on this site you can submit a "great story" about yourself or someone you love who has down syndrome. what a great way to show off all the wonderful things that people with DS do!

ndss also produced a couple of videos showcasing two incredible self advocates, sujeet desai and sara wolff.

i might have mentioned sujeet desai in a previous post. i have seen him perform and speak live. at the time i was very new to the down syndrome world, maya was only 2 months old. i have to tell you the first moment i was in sujeet's presence he took me by surprise. it was my first DS event and i didn't know what to expect honestly. as my husband and i walked through the door of the lecture hall, sujeet was standing there, greeting everyone. i couldn't help but watch him while he was being introduced. here was this man, dressed in black slacks and a dress shirt, his cellphone was clipped to his belt. there was so much confidence in his stance. he was so calm and professional during his part of the lecture. sujeet and his mother were very uplifting speakers and gave great information on how to help our children excel. i will never forget that experience. it gave me hope when i needed it most.

inspiring swimmer and advocate

check out this video from the today show on msnbc.com, it features Karen Gaffney and her inspiring story of swimming across lake tahoe.

she is also president of the karen gaffney foundation dedicated to full inclusion in schools, communities and the workplace for people with Down syndrome.

http://www.karengaffneyfoundation.com/

Vote for Brad!

Only five days left to help self advocate Brad Hennefer attend the All Star Game and earn a feature in People Magazine. Vote as many times as you like, voting ends on June 24th.

To vote for Brad, go to www.peopleallstars.com and click on the Philadelphia Phillies logo. Then click on Brad's picture.


this guy is an inspiration! not only does he play basketball but also golf. see more about the golf for life foundation.

The Brad Hennefer Golf for Life Foundation

self advocacy

here's another site that i'm sure i've told most of my friends about. it's the national down syndrome congress site. my favorite part of this site is the self advocacy section. i love the idea that maya is a self advocate. because she is interacting with so many people she is making a big difference.

a while ago many people with down syndrome were stuffed away in institutions. now they are immersed in the society. it just makes me so happy when i see people out and about. of course now i probably notice it more and more because of maya.

the other day i went to the bagel shop to grab us some breakfast. it's well known that this place, on the weekends, is the stopping point for cyclist. on any given sunday you can see groups of cyclist eating their bagels and drinking some coffee, before they get back on their cycles to continue. i've seen many there with their spandex outfits and bandanna hats. one sunday a couple of weekends ago, i was walking out the door when i saw a young man with down syndrome with a group of cyclists. he was dressed as everyone else was, in his spandex outfit, sunglasses on his head. he looked like he was just one of the guys. i can't tell you how this made me so happy. it really touched my heart. a friend of mine went there a few weeks later and saw the same fellow. he said he saw him getting on a tandem bike with another man. they rode away from the bagel place just as my friend was exiting. now my friend also notices these events and shares the same excitement and joy.

the below page has little snippets of the self advocate council. the people listed here are super inspiring.

self advocate council