Our journey through a prenatal Trisomy 21 (Down syndrome) diagnosis and beyond

I wish it were possible to recognize at the beginning of our life’s story what an incredible journey we are truly on. If so, I would have sat down years ago and begun documenting all the ordinary and extraordinary events in this amazing life I have been blessed with. Sometimes, though, it may take just one more thing to open your eyes into the beauty of the life you have led and causes you to pause and truly count the blessings that are now so many they will never be enumerated.

If you are just joining us, please go back to September 2012 to get caught up.

Tuesday, December 23, 2014

Partnership to Make a Change

The Search

Remember those moments right after you heard that your baby might have Down syndrome?

Maybe you cried. Maybe you snuggled your new baby.  Maybe you thought about every possible future for your child. Maybe you were relieved that is wasn’t more serious. Maybe you were shocked.

Maybe you couldn’t do anything.

Undoubtedly, your mind raced through all the experiences you have had with people with Down syndrome, that is, if you had ever had any.

I relied on the internet for lots and lots of photos of babies with Down syndrome.  Google, Instagram, Wikipedia, blogs, organizations….so much out there – good and bad.

In talking with other moms, I know I am not alone in my searching….

“I remember laying in the hospital searching  ‘beautiful people with Down syndrome’ all night long (after she was born).”  Sierra

“It made me worry more.  I never should have.  All I read was all negative.” Elsbeth

“I Googled for pictures of babies with Down syndrome after I took the Maternit21 test.”  Cristina

I did once and never did again, I just wanted to talk to other moms who went or was pregnant with my situation. Never did much research it created too much anxiety!” Jennifer

“I wanted to see mostly pictures of kids and babies since I had seen adults before.” Lisa

I didn’t specifically seek out pictures but, when I came across them, they did add a lot of light into a pretty dim time!”  Shana

“I buried my head in my phone for a good 3 weeks.”  Becky

“In the community and even in my job working with folks with disabilities, I rarely saw people people of color with Ds. My husband and I were curious. Even when searching the internet, it was hard to find actual photos.” Chandra

“I searched Pinterest and it actually made me feel better.” Kelly

In fact, when I posted the question to my Facebook page asking whether parents looked at pictures and information online after the diagnosis, the response was immediate and overwhelmingly clear- the internet became a lifeline of support for parents to that new baby with Down syndrome.  Now this shouldn’t be a surprise considering the access to information that exists today.  But to hear time and time again that new parents sitting in a hospital room are searching for this information at such a delicate time?  It makes us want to do better.  In fact, getting parents accurate, reliable, current information is what drove us to begin Down Syndrome Diagnosis Network.  We wanted parents to have a website to find that would help them in that diagnosis stage and be specific to those needs.


Izzy's Photo: Target
You may have seen the article about a new (adorable) face gracing the Target ad in December.  Izzy Bradley, daughter of our own DSDN President Heather, was selected as model for the ad after a request for models  was sent out via Down Syndrome Associate of Minnesota. That DSAM message led to Izzy’s casting call. Heather never envisioned a modeling career for Izzy or her other daughters, but this seemed like a way to continue to support new and expectant parents with a Down syndrome diagnosis. 

“My husband and I thought having a model with Down syndrome would set a good example for other retailers,” Bradley said. “Ads are becoming more diverse in general, but we feel people with disabilities are still left out.”

People, Huffington Post, Yahoo news and ABC are among the media embracing and sharing this story. The response has been incredible and sweet Izzy has gone viral with nearly a million views around the world via many news outlets. 

Heather believes, “A simple image can affect perceptions of what a Ds diagnosis means. These images should be commonplace in advertising.”

What if…..

What if this wasn’t such “news?”

What if people with DS and other disabilities weren’t something that we had to seek out?

What if people of all shapes, sizes and forms were a part of our mainstream media each day?

What if you opened your favorite retailer’s ad and saw someone that looked like someone you love there in the pages?

Could that impact a family at the time of diagnosis?  

We think so.

DSDN is proud to partner with Changing the Face of Beauty to support the #15in2015 campaign!

Changing the Face of Beauty’s mission is: To encourage the integration of individuals with disabilities into general advertising and the media. "Changing the Face of Beauty" was founded by Steve English and Katie Driscoll.  This campaign grew from the love that they both have for their family and for the community of children and young adults with disabilities.  They both felt it was important for everyone to be included in advertising.  They started their own campaign in the beginning of 2012 and through the help of organizations, companies and media outlets recognizing their efforts they have grown and are now speaking out for children and young adults with different abilities around the world.

“We are ready for a more integrated media here in the United States.....in the WORLD.  So it is time to speak even louder.  Let’s remind retailers where we shop by calling them out.  Let them know where that 225 Billion dollars comes from.  It comes from YOU and your family.  Show them your face.  Show them what YOUR family looks like and post a picture to social media calling them out”  says Driscoll.

Join Us!
Camden's Photo: Jones Photography
To be a part of the campaign, on social media post a pic.  Use this caption (this example includes GapKids!) 

“Hey #‎GapKids #‎IMREADY for change. We want YOU to include models with disabilities in 2015. We want YOU to be part of the #‎15in2015!”  #The Ellen DeGeneres Show #‎Changingthefaceofbeauty #DSDN

Be sure to LIKE the page of the retailer and use hashtags to link to who you are calling out to the campaign!  (Katie would love to see this reach a larger audience and is hoping to catch Ellen’s eye ;) )

Since rolling out this idea yesterday, we've had many families submit pics and tag favorite stores. One mom, Meghan Roberson, submitted this photo of her son, Camden.  She sent it because, "Camden is brilliant and beautiful. His little bit of extra gives him a bit of extra in everything. Changing the face of beauty is the perfect campaign for him to be a part of because he has changed his family for the better and we see the world in a more beautiful way."  Follow more of the Roberson's journey with Camden here.

Check out these kids!
Jude; captured by mom

Ginger, Jude's mom wanted everyone to know that "Seeing children who look like my child in advertisements is an important form of representation. We want others to see Jude as a part of our society!" 

Jadon's mom, Sheryl, also added to his caption and included, "Jadon's ready to share his charm and personality...think you can handle it..."

All of us want to see diversity represented.  Will you join us? 

Facebook, Twitter, Instagram, Pinterest, Blogs – where can you share?

Gap, Pottery Barn, Walmart, Kohls, Fisher Price, Pampers, Huggies….Who will you call out today?
Jadon; captured by his mama

Let’s use this viral story to make a BIG difference for parents and families with a new diagnosis.

Tell us below who YOU are going to call out! 

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