World Down Syndrome Day 2010

This is an encore performance of last year's World Down Syndrome Day! Here are 10 things you can do to promote awareness and understanding of Down syndrome. I originally wrote it for people who don't have a direct connection to Down syndrome. Please feel free to share it if you want. If you've already read my list, then skip down to the bottom for a little more Hannah.

World DS Day is the 21st day of the third month of the year. The date represents the 3 copies of the 21st chromosome. Kinda cute. Now someone explain how October became Down Syndrome Awareness Month??

1. Learn more about Down syndrome! Here is a link to some Myths and Facts about Ds. http://www.ndss.org/index.php?option=com_content&view=article&id=59&Itemid=76 Did you know that 80% of babies born with Down syndrome are born to women under the age of 35? I know teenagers who have had babies with Down syndrome.

2. Talk to your children about people with differences. The way I explain Down syndrome to young children who are curious is to say that when a baby is first growing inside the mother there are directions inside the baby that tell it how to grow, what color hair and eyes it will have and how tall it will be. A baby with Down syndrome has an extra set of directions, which makes it more difficult for the baby to grow and develop. A baby with Down syndrome can learn to do all the things that a typical baby can do, it just takes longer to learn because of all the extra directions. Older kids can learn about chromosomes and how individuals with Down syndrome have an extra 21st chromosome. The medical name for Down syndrome is Trisomy 21. With your children, share what you know, and admit what you don't know about cognitive disabilities.

3. See if your library has current information about Down syndrome. Do a quick online search of your library’s listings for Ds. If they have no books that have been written in the past 5-7 years, please ask them to update their books. Any non-fiction book older than 15 years should be removed from the shelves.

4. Visit Reece’s Rainbow, an international Down syndrome adoption ministry. Learn more about how children with Down syndrome are treated in other countries. It is much like the United States treated individuals with cognitive disabilities 50 years ago.http://www.reecesrainbow.com/ Consider supporting a child’s adoption with a monetary donation. I have given donations in honor of my mother for Mother’s Day.

5. Write a short note to your legislators telling them that you want them to fund the Prenatally and Postnatally Diagnosed Conditions Awareness Act (the Kennedy-Brownback bill). Currently up to 90% of all prenatally diagnosed fetuses with Down syndrome are aborted. It’s important to understand that this is not about pro-life or pro-choice, but rather about providing parents with needed data and support. Unfortunately the worst presenters of a diagnosis of Down syndrome today are medical professionals because there are no mechanisms to train them, to teach them how to deliver that diagnosis and to present the options, all of the options.

6. If you’re a woman, start a conversation with your OB/Gyn about concerns you may have about getting accurate information to families that receive a prenatal diagnosis. Prenatal testing is soon going to change, and the OBs are the first to deliver unexpected news. Bring the doctor a copy of this research: http://www.brianskotko.com/images/stories/Files/italianjournalofpediatricsfinal.pdf

7. Watch a movie featuring a person with a disability: Emma’s Gifts (I’m biased since Hannah and I have cameos in this documentary), Duo, The Other Sister (which I think is pretty funny). **NEW** watch The Specials an online documentary/reality show following young adults with disabilities in England. Each episode is only about 10 minutes long.

8. Contact your local Down syndrome parent support group (just Google Down syndrome and your geographic area) and email them to see what sorts of ways you could help. Usually volunteers to assist with childcare, programs and events are more than welcome!

9. http://www.downsyndromeinfo.org/dreamsinreality Watch this short online video for some inspiration.

10. Remove the word “retarded” from your everyday speech. It used to be a medical term (as did the words “idiot”, “imbecile” and “moron”), but has become such a derogatory word that it is on its way out. The new “R-word” is Respect.
http://www.r-word.org/

Here's my girl, still going places in the world!

Today, I heard two WONDERFUL things. Hannah's friend Shea is visiting us for the weekend. This morning Shea was talking to me and said, "I'm so glad I met Hannah when I was just born. What would I do without her?"

This evening we had a group of friends come over--homeschooling families--eight kids and 10 adults. The kids played outside for a long time, the girls taking turns jumping rope (Hannah's new skill--she can get up to 10 without tangling up). It was a long night, but everyone was in good cheer. Usually Hannah fizzles out after an hour or two of having her turf invaded. But tonight she lasted through all 4 hours of noise, food and fun. The girls were out on the deck jumping rope for hours. When it was time for our guests to leave, Hannah's friend Fran came up to me to say goodbye. With a hug, she said, "I just love your daughter."

Hannah's going places in the world, and she's not going alone.