March 21, 2009

World Down Syndrome Day 3-21

When word of World DS Day started to make the rounds on Facebook, I had some friends who wanted to know what they could do themselves to make a difference. So I made this list. I realize most of the Hannigans' readership already has a personal interest in Down syndrome, but for those of you new to the journey, you might want to read through these, and perhaps share them with family members and friends. (And to explain the choice of date for World DS Day--the 21st day of the third month of the year 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. Visit my blog (or other blogs about disabilities) with your children, so they have a connection with someone with Ds. (warning: you might want to pre-read some of my posts…I cannot guarantee I’m not a raving lunatic at times. It can be frustrating having a child with a disability, and I try to give an accurate representation of life with Hannah). http://hannigans.blogspot.com/

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).

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/

My Girl

She's going places in the world.

6 comments:

Beverly said...

Happy World Down Syndrome Day!!!

Kelly said...

Excellent suggestions Beth! I linked to your blog on mine. I wasn't able to be as creative as you. You are a tremendous advocate for you daughter and everyone with disabilities. Thank you!

Chrystal said...

FANtastic info! Thank you so, so much for sharing.

Dawn said...

Thank you very much for sharing your journey. I wish I had started blogging about my journey when it started 19 years ago, but better late than never...right?

My daughter also has an extra chromosome, though not a common one. I think it's that extra chromosome that makes my daughter, she is my youngest as well, the sweetheart that she is.

Beth said...

Dawn, thanks for stopping by (and everyone else too!)! I went to your blog, and tried to leave a comment, but it won't let me. Perhaps you need to tweak your settings? I don't know! I just sort of pretend I know what I'm doing with blogger!

Dawn said...

Thank you Beth. I totally forgot to tweak my comments settings. I guess I got carried away trying to take care of the important things...like finding the cutest background.