Wednesday, March 21, 2012

Guess what day it is today?

It is World Down syndrome day!
To celebrate, Nichole actually posed for a picture.

It was a busy, fun, and exciting morning. Let me tell you a little bit about what Nichole and I were up to today. Especially since, you know, she is the reason why we celebrate this day.

Nichole, my friend Robin and I went to Nichole's school to talk to all the kids K-5 about Down syndrome. There are about 300 students, so I wasn't sure how it would work to talk to such large groups (3-5 graders first, then K-2) The kids were amazing!

We talked a little bit about Down syndrome, and how the extra chromosomes makes the information in our body get a little bit confused so it results in some things being a little bit harder for kids with Down syndrome. In order to explain some of the challenges better, I invited some volunteers to come up front.

We put a large marshmallow in our mouth and we tried to answer some questions. It was hard!
We put socks on our hands and tried to pick up beans, one at a time, and put them in a bowl. It was hard!
With the socks still on, we had to pick up a card from a deck of cards and flip them over. It was hard!
Finally, we did some jumping jacks, but then we held weights on our hands and tried to do jumping jacks again. It was a lot harder with the weights!

You can click here and see where I got these wonderful ideas!

Although there are some differences, we then talked about all the things we love and like to do. Kids with Down syndrome love and like the same things kids their age like to do. We realized then that we are more alike than different!

To finish our time, we watched a short video called: My Friend Isabelle. It was originally a book and was adapted to be presented to larger groups of kids. You can click here and watch the video.

I made a display for the school so that kids can stop by and look at all the things that kids with Down syndrome can do and like to do. All the kids thought it was great! 

All kids will take a letter home to show their parents. This is what it says:

Dear  Parents:

Today I had the privilege to come to (Our Elementary School) and talk to your child about Down syndrome. March 21st is World Down syndrome day (3/21) because people with Down syndrome have 3 copies of the 21st chromosome.

What did we do?

We watched a short video about Charlie and his good friend Isabelle. Isabelle has Down syndrome. We then got to do some fun activities involving weights, socks, and marshmallows so that we could better understand what are some of the challenges that people with Down syndrome have. Finally, we talked about all the ways in which people with Down syndrome are more alike us than they are different. 

But what was most exciting, is that they got to meet Nichole, my daughter.

Nichole is 4 years old and she attends the EC program at school. She loves princesses, Barbies, Strawberry Shortcake and Curious George. She loves to play pretend and dress-up. She is also a little performer, and likes to make people laugh. Sometimes, when other people are sad, she gives hugs and pats their backs to make them feel better. She adores her big sisters (they are in Kindergarten). 

Nichole’s favorite snacks are Doritos and M&Ms. She is a dancer, a trampoline jumper, and a rascal. Although she has some trouble with her words, Nichole is more alike other 4-year-old little girls than she is different.

Although it was hard to deal with Nichole’s diagnosis at the beginning, there is nothing about her that our family would change. She has brought more joy to our lives than we ever imagined. She is absolutely perfect!

I hope your child shares with you what they learned today about Down syndrome. If you have any questions, don’t hesitate to contact me. I always love to talk to other parents about Down syndrome and other special needs.

On the back of this page, you will find some quick facts about Down syndrome.
Ellen Stumbo
Facts taken from the National Down Syndrome Society
• Down syndrome occurs when some or all of a person’s cells have an extra full or partial copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.
• Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies in the United States is born with Down syndrome. About 6,000 babies are born with Down syndrome every year.
• There are more than 400,000 people living with Down syndrome in the United States.
• Down syndrome occurs in people of all races and economic levels.
• The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age.
• People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.
• A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.
• Life expectancy for people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to 60 today.
• People with Down syndrome attend school, work, participate in decisions that affect them, and contribute to society in many wonderful ways.

Most people with Down syndrome have cognitive delays that are mild to moderate. Children with Down syndrome fully participate in public and private educational programs. Educators and researchers are still discovering the full educational potential of people with Down syndrome.
• Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.

People with Down syndrome have feelings just like everyone else in the population. They experience the full range of emotions. They respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior.

People with Down syndrome have meaningful friendships, date, socialize, form ongoing relationships and marry.

***Also, for Down Syndrome Day I have a guest post on "Different Dream for my child" site. Click here and check out my post where I highlight the beautiful relationship between my daughters and how Down syndrome affects siblings.***

 Last, I want to share with you the letter I wrote to Nichole last year on this day.

Dear Nichole,

When you came into my life, your diagnosis of Down syndrome threatened to crush my heart. That tiny extra 21st chromosome seemed too powerful for me to stand up against. I cried constantly, and I feared our lives would be covered with limitations. I wanted to wake up and find that you were a "normal" baby, that Down syndrome was only a part of a bad dream. But it wasn't a dream. You almond shaped eyes looked straight at me. Then one day, I thought you were looking not just at me, but straight into me.

I don't know how to describe this to you, so I will do the best I can. It was as if I had been dreaming for most of my life, and then you came in and you woke me up. Love, joy, and peace became almost tangible. I felt as if my eyes had been opened to the real things that matter in this world. Maybe I simply had a "weak heart" and then you showed up ready to fix it.

Not only did you awaken something inside of me; you changed me. God, using you, a little baby girl with Down syndrome, to touch the places of my life that needed to allow Him in.

I look at you now, and  Down syndrome, although it does not define you, is something in you that I cherish. It is something that I celebrate. I would not change a thing about you. Every single chromosome you have is absolutely perfect! You are exactly how God intended you to be, He created your inmost being.

Today is World Down syndrome day. Thanks to you, I realize the significance of this day because I know that Down syndrome is something to be celebrated, something that we could all use a little bit more of. I wish I loved more like you, and that I gave my hugs as freely as you do. I wish I celebrated others with the same excitement you show. I am blessed to have you my sweet girl.

Happy day to you my little rascal, and thank you for making ours happy because you are you!

 I love you my little rascal Nichole. I love you more than you will ever know!


  1. Wow, tons of information and tons of work, but I love that you did that for your school and I hope it educated a bunch of people. I know I learned a thing or two!

    1. I hope I get to do it in other schools too!

  2. Ellen,

    This is so wonderful! I am proud of you! I'm glad the presentation went well. I'm sure it was a great learning experience for the kids (and fun, too!) How did Nichole do meeting all the kids? Was she on stage with you?


  3. So brilliantly researched. I do talks to SEN teachers and older kids as well as mediacl professionals, but this was great. Keep up the good work!


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