Friday, March 21, 2014

7 Things on 3/21 - World Down Syndrome Day

We love our neighborhood!

This is our second year celebrating 3/21, World Down Syndrome Day. Looking back at this day last year I can honestly say I didn't know much about Down syndrome. I thought it would be fun to share 7 things that I have learned in the past 14 months. We have had a crash course and some of the information is really surprising! I hope you find this information interesting too. This post is also jam packed full of photos, since it's been a while and I have a hard time picking my favorites!

Princess Ellie says... keep reading, this is some interesting stuff!

1. Bear with me, point 1 is a long one but it's very important. To commemorate World Down Syndrome Day, I am so happy to announce the launch of DSDN, the Down Syndrome Diagnosis Network.  We are a non-profit group comprised of 8 mothers from across the US who all have a child with T21. We come from varying political and religious backgrounds and we believe in a pro-information stance. Our mission is to create an unbiased family-centered discussion of Down syndrome within the medical community. 

  • We encourage parents to respectfully write letters to their medical providers whether they had a poor or positive experience in receiving the diagnosis. 
  • We help to connect families to birth-club type support groups on Facebook. These private groups have been my lifeline and I've made friendships that will last a lifetime. 
  • We help connect families with their local Ds organizations to encourage face to face support. Sometimes just hearing the words "I understand" can mean the world. 
  • We have an online book of over 80 true-life birth stories linked to our site to help parents know that they are not alone on this journey. You can find Ellie's story in the "Unique Diagnosis" section. 
  • We have compiled a links section to the most current and useful Ds related sites such as Down Syndrome PregnancyInternational Down Syndrome CoalitionDown Syndrome Blogs and more.

I'm so grateful to be a part of this community and am passionate about our message. You can also find us on Facebook and like our page

Part of my passion in getting involved in this non-profit stems back from something I learned shortly after Ellie's birth. Did you know that 90% of babies prenatally diagnosed with Down syndrome are terminated? This means only 1 out of 10 babies like Ellie get to meet their families. I researched this number a little deeper and have found that the % may not be as high as reported. The statistic is based on women who are opting to have invasive testing (like a CVS or amnio), and it does not include the women who refuse prenatal testing. So the number may not truly be 90%, but it's still high. I think I am discovering part of the reason for this staggering percentage.

Many of the moms in my online group have shared that they were pushed to terminate by their doctors when they received their diagnosis. I've also had the opportunity to talk to pregnant women who are facing life-changing decisions. One story that I can't shake from my mind was a mother I spoke with who found out her unborn baby had T21. She was 20 weeks along. The doctors informed her that her child will never walk, never talk, and will be in a group home by puberty. He pleaded with her that was unfair to her other children to bring a child with Down syndrome into their lives. He told her it was utterly selfish of her. She was heartbroken, scared, and completely defeated. Ultimately, this mother chose termination. She had complete and total trust in her medical provider. As a mother of a child with T21 I know wholeheartedly that the information she received was not true. It is crucial that the medical community is providing unbiased and up-to-date information when discussing options with their patients. The information they are providing is life altering. This is why DSDN's mission is so important to me.

2. In keeping with the numbers theme, I was also surprised when I found out that Down syndrome occurs in 1 out of 691 live births (National Down Syndrome Society). There's a misconception that more women of "advanced maternal age" have babies with Down syndrome. It's true your odds of having a baby with Trisomy 21 go up as you age, but more babies are born to younger mamas due to the amount of women having babies in their younger years (approximately 80% of babies with Ds are born to women under 35) See the below chart that shows the odds based on age from The March of Dimes.

3. Some people with Down syndrome can drive! I was excited when I heard this because it's something I have wondered about but I had no idea who to ask. Noah's Dad did a great post highlighting 7 of these drivers. He gave me permission to link the post here, Noah's Dad - Can People with Ds Get Their Drivers License? I wonder if Ellie will get her drivers license someday? Only time will tell!

Come on dad, give me the keys already! She looks so grown up here.

4. The life expectancy for a person with Down syndrome has gone from 25 back in 1983 to 60 years old today (National Down Syndrome Society) By the time Ellie is older I am curious what this statistic will be! It's amazing the advances that have happened just in the past 30 years and I have a feeling we will look back in amazement in the next 30 years.

5. College opportunities! Did you know that there are over 250 college programs nationwide that are tailored for kids just like Ellie? How awesome is that? In the weeks after I had Ellie I reached out to the Down syndrome support group on Babycenter, and met Margaret "Gary" Bender. Her daughter Alex is AMAZING. Alex is now 20 and last year she won the bronze medal for downhill skiing in the Special Olympics in S. Korea. Today she is a freshman at the University of Cincinnati in the TAP Program. I read Gary's book From Grief to Celebration in the first month of Ellie's life and it was so encouraging and uplifting for me. It was just what I needed at the time to realize Ellie's future is so bright. Alex is such an amazing role model and I'm grateful for mothers like Gary who have paved the way for new moms like me. What a community of support! 
There's a great site to find college programs for special needs in your area called Think College. I'm thinking Oregon State needs a program like this.... who knows what'll be available in 17 years ;) (GO BEAVS!)
Yay for college!!
6. "Is she walking yet?" I have this photo of Ellie as my screensaver at work:

I've been asked this question at least 10 times because age 1 is the average age that most kids learn to walk. Well kids with Down syndrome have their own development chart and tend to do things a little later than typical kiddos. The average age for a child with Down syndrome to walk is actually 2. I had no idea until we had Ellie! Here's a chart that helps put the range in perspective: (from
And as I like to say, Ellie does everything on "Ellie time", and she is crawling around now and surprising us daily with the things she is learning.

7. "God only gives special kids to special parents"...Well duh, Jess and I are awesome, right? We heard this sentiment A LOT after Ellie was born. To be honest, it's not true. Surprise! We are just like any other mom and dad, and it's not a stretch to say we are actually pretty dang boring. But I do believe God knew what he was doing when he gave us Ellie- special or not! Just like he knew what he was doing when we were given Will and Luke. In other words, we are just like any other family of five and I truly believe our kids were hand picked for us. And I feel very lucky that they are ours.

Our three. And no, Luke isn't wearing hair clips it's his backwards sunglasses!
Before I end this post I also have to share this amazingly beautiful and inspirational video that the IDSC (International Down Syndrome Coalition) made for World Down Syndrome Day. It is sure to make you smile! I am honored this year to have Ellie's photo picked to be in the video! See if you can find her!! (hint: she's about midway through, 2:17 to be exact) You can watch it here:

IDSC 2014 World Down Syndrome Day Video

And lastly (I promise) I woke up this morning, on 3/21 and saw that Ellie and our story made the news. My heart is full and I am feeling so grateful. You can check out the article in the Oregonian here:

The Down Syndrome Diagnosis Network Sprouts from Moms Looking for Support

My song choice came to me during my 11 hour flight to Asia last week. I was watching the movie The Delivery Man with Vince Vaughn when I heard it. I was rummy and tired and missing my babies, and it totally made me cry (what song doesn't these days?) I had never heard it before and it really made me think of my kids, I thought it was a good fit for today's post. :)

Little hands
The world is yours
Hold it close with open arms

Little feet
With miles ahead
Take it slow, see it all, take it in

Little Hands - Inland Sky 
High fives with neighbor Dani!
So? Who is the fairest??
Having fun with big brother and Eric.
Will, Luke and Ellie with Eric and FAMOUS IRIS, and Dani! xoxo
Giving big squeezes to her friend Kate.
Having fun with Kate!
It's World Down Syndrome Day!
Hangin' with my favorite guy (I'm not kidding, this girl is smitten with her daddy!)
Thanks for reading my mom's blog, I hope you learned something new today!!