Friday, March 21, 2014

World Down Syndrome Day - Practical Advocacy

March 21. 3/21.

As in 3, 21s. 

As in 3 copies of the 21st chromosome.

Trisomy 21. Also known as Down Syndrome

In the past year I have been introduced to a world I never thought I would be a part of. The world of Down Syndrome advocacy. I love this cause and am so happy to be a part of this world. However, when Addison was first born, I will admit, I was a bit overwhelmed. I loved my brother, all 47 chromosomes. Through loving him I came to love Down Syndrome.  But I wasn't sure what I could do to support this cause. Maybe you are where I was. Wanting to help but clueless where to begin. In honor of World Down Syndrome Day, I would like to share with you practical ways to make a positive change for Down Syndrome.
Educate Yourself
Ignorance is the #1 enemy of Down Syndrome. Outdated and inaccurate information is everywhere. So few people realize the potential of people with Down Syndrome. Ever fewer people know the amazing things people with Down Syndrome are doing. And rarely is anyone made aware of the shocking number of babies prenatally diagnosed with Down Syndrome aborted...95%. Knowledge is power. Read mementos written by people with Down Syndrome and their families (I strongly recommend Raising Henry, Expecting AdamGifts and A Special Kind of Hero). I have a Pinterest board full of resources, stories, photos and quotes about Down Syndrome and there are many other boards like it on Pinterest.  Around the web there are many blogs written by parents of children with Down Syndrome (two favorites: Noah's Dad and My Name is Sarah). Groups such as NDSS, Global Down Syndrome Foundation and IDSC have great websites packed with articles and information. 

Educate Others
When talking to people I have noticed a hesitance to say "Down Syndrome" in conversation. I believe it is because people are so afraid of saying the wrong thing and offending someone. To break the ice, I try to say the Down Syndrome for makes it less awkward. When I'm open about it they follow suit and you can see their mental sigh of relief. The important thing is: we're talking about Down Syndrome. They are learning, I'm learning. We're swapping stories and facts. We're educating each other and, hopefully, they walk away feeling more positive and comfortable with Down Syndrome. As you share with others what you are learning about Down Syndrome their view is changing and those stereotypes are fading away as they learn the reality. If you feel uncomfortable talking about Down Syndrome I would recommended check out this guide put out by the Canadian Down Syndrome Society. It contains brief, simple guidelines for proper terminology when talking about Down Syndrome. NOTE: At the same time, please don't take offence if someone uses a word or term you don't consider kind. Hear them out and listen to their heart before you judge their speech.

Therapy is so vital to the development of a child with Down Syndrome. Addison spends three hours a day in intense therapy. Fortunately, there are enough of us to help him that it is manageable. However, that is not the case for all families. In most families the mother is doing everything by herself. That's a big strain, especially if there are other children at home. Why not volunteer to assist with therapy every so often? Or babysit siblings so mom can work one on one with the child? Or babysit all the kids and give the mom a brake? You are helping a child to reach their full potential and therefore helping write another success story for the world to read.

March 30th I will be running my very first 5k race and my first race for Down Syndrome awareness. As I have been training over the past several months (in the cold) "Why am I doing this?" has crossed my mind more than once. The short answer is, for Henry. But how will this run help Henry or Down Syndrome? That answer is a little longer. The funds raised from entry fees will be given to several wonderful Down Syndrome Advocacy groups in the area. More importantly, as hundreds of people are running down Pennsylvania Avenue people will notice. And their curiosity and interest will be sparked. We will be making people aware of Down Syndrome and showing the world people care and are willing to stand up for the rights of people with Down Syndrome. And that is advocacy at it's best. If you are a runner and interested in using your hobby for a good cause, and other similar websites have search engines for finding races for various causes in your area.

This past month a very important bill was presented before the Maryland senate. A Down Syndrome pro-information bill requiring healthcare providers who diagnose children, pre and postnatal, to give parents accurate and up-to-date information. This is HUGE! Do you know how many lives could be saved by this bill? How many lives could be changed? How many parents would be able to celebrate their child's birth instead of being depressed and bogged down by harmful, outdated, stereotypical information doctors are giving them? If you live in the U.S. you, like me, have the privilege of being able to be actively involved with the law making process. You can help positive laws be passed by contacting your representative and expressing your opinion, lobbying and sharing testimonies and stories.  Pay attention and when bills (such as the DS pro-information bill) are presented do whatever you possibly can to make them law. Keep in mind any bill encompassing special needs and disabilities will effect people with Down Syndrome. Websites such as are great for find and keeping up with federal bills. Many state governments have similar websites such as the Maryland General Assembly website.

It doesn't seem like much but simply wearing clothing or jewelry supporting Down Syndrome raises awareness. People will ask you questions thus giving you an "in" for sharing the realities of Down Syndrome (see point two). I have a blue and yellow Down Syndrome awareness bracelet my mom gave me for Christmas I wear almost every time I leave the house. Even my dad wears a bracelet with the DS awareness ribbon and was quite distressed when he couldn't find it last week. Again, it doesn't seem like much but it gives you a chance to talk about Down Syndrome and show you care. And that is big.

I am privileged to be a part of F.R.I.E.N.D.S. an amazing, active Down Syndrome advocacy group based in my county. They are a group of awesome people who care so much and are doing great things for the Down Syndrome community. Each year they host a Buddy Walk, a conference for sharing with educators how to teach children with Down Syndrome and many other events. They are actively involved with legislation, fundraising and providing support for people with Down Syndrome and their families. There are such groups all throughout the country. Find one near you and get involved. If nothing else, it's a great chance to meet people with Down Syndrome and see who they really are...people. People with amazing more potential than you or I can comprehend.

These are only a few of the many, many idea out there. I would love to hear your idea and how you have been involved with advocacy...for Down Syndrome or any cause!

On that note, happy World Down Syndrome Day! Please remember today isn't just about's about CELEBRATING Down Syndrome and the wonderful GIFT it is.


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