Rockin'versary

I know, totally not a word, but it is now :)

Today I am watching moms celebrate on the original rockin' mom group page about how much the love, support and friendship has meant to them over the past two years.  It is truly humbling and tear-inducing.

To hear from so many women about the power of our little groups is unbelievable at times. Mostly because I started the group because I so desperately wanted to find a place to "fit."  Owen was a few weeks old.  I wasn't a new mom, by any definition, but so many slight nuances just weren't in my parenting experiences yet.  I had quit my job the year before to stay home when Colton was born and was still finding my place in new friendship circles that weren't centered around my career. I found so much support online through BabyCenter and reached out to start a group with other new moms. And that, as they say, is how it all began.  Within a few weeks, we had over 100 moms with babies born with Down syndrome in 2012/2013.  We kept it small and began sharing our lives, tears, smiles, fears, celebrations.  Instant connections made around the world and friendships forged across miles. Incredible.

The whole concept is simple, really.  A place for moms to come and share life. The only catch, you have to have a baby with Down syndrome.  The problem....When we stopped adding moms, I started getting more requests and some were not too happy that we wouldn't include them.  You know how those negative things stick with you, even through all the wonderful ones? When I told a mom that I would help her start a new board for the next set of moms, she replied, "That sounds really inclusive. How ironic."  UGH.  After some time, I decided there really wasn't anything (besides sleep, of course) stopping me from creating a new group. I enlisted some moms to help run it, got it set up and started adding new moms there.  Within a few months, that group filled up too, so you can imagine where that led...Now, two years later, we have 15 rockin' mom related groups including almost 1400 moms from around the world.

While this all may sound wonderful, it also comes at a cost.  The cost of caring for and investing in hundreds of people and their families.  I feel like an auntie to hundreds of children and a sister to their mothers.  We have celebrated weddings and new siblings, we have mourned the loss of rockin' babies and their loved ones.  We have cheered at each milestone reached, no matter how seemingly insignificant; we have comforted the anxieties, worries and stresses that we also feel.

The real gift: Each other.  Knowing we are not alone in any of this. 

I didn't have a strong local experience. But I did have a wealth of support available 24/7 from moms in my shoes. Having moms from a variety of backgrounds with wonderfully diverse life experiences has benefited us all and I can never say thank you enough to them for sharing their lives with us. 

Two years has quickly passed and I cannot wait to see our anniversary celebration in the years to come <3

When Down syndrome trends...

Down syndrome was trending in social media this week.  It made me a bit nervous to open the first article;  I wasn’t sure what to expect. Typically when I see DS in the media, it is a feel good story that is intended to show us all how “not different” people with DS are (Driving a car, going to college, prom king/queen, playing with a dog) but often miss the mark, in my opinion.  But this story was different, and I could tell right away that it wouldn’t be leaving the headlines soon.

In case you missed it, the story centered around baby Leo and his recent birth diagnosis.  In the mother’s native, Armenia, common practice was to give parents the choice to leave their child behind at the hospital, where it might go on to an orphanage.  The father explained in his story that his wife decided not to keep the baby and he, instead, was going to take baby Leo home with him to his native New Zealand.  He reported that his wife asked for a divorce later that week and the two were no separated.   As I read the story, it seemed sad and wonderful all at the same time.  But something also didn’t sit right with me.  I am not sure why, but having the gofundme fundraiser immediately linked to the dad’s story just seemed…off.  I understand that he would have expenses and I surely know how much having a child (or four!) costs, but it just seemed off…

Today the mom’s side of the story was released to the public.  And in reading it, sadness is all that I felt.  It seemed genuine and honest and real.  In knowing what I know about how parents with a new diagnosis are treated, I really wasn’t that surprised at all.  But her story doesn't fully ring true, either.

Truthfully, I am terribly sorry for this family. And I hope that medical professionals across the world see how THEY play a great role in this story. Do I believe there may have been underlying issues with that couple to begin with? No doubt in my mind. Do I believe that if they had had a much better diagnosis conversation, we would never have heard their story? Absolutely.

This story should be something that every medical professional reads carefully.  In our world, in 2015, it is appalling to think that this is a common practice or standard of care anywhere.  I realize that in other countries, there are various beliefs held about disability, but it doesn't make it any less heart-wrenching. And it wasn't that long ago that here in the US, there was a common practice not unlike that in Armenia.  We do, however, know from our own history that allowing parents to parent children born with Down syndrome has made an incredible impact.  People with DS are making great gains and the life expectancy for someone with DS has increased dramatically in the past 20 years.  

And while this is something that many medical professionals will brush off and claim disconnected to the way things happen in their practice, their town or their state.  It is just UNTRUE.  And is exactly a key reason why we began DSDN.  Read some of the diagnosis stories in our book Unexpected and you will see what it was like for these families, in the US and around the world, to receive a new DS diagnosis in the past few years.  I think you will notice some haunting similarities to the headlining story. Sad, but true.

In meeting over 1000 moms with children with DS under 3, I have heard time and time again how common this diagnosis experience is.  In fact, we recently surveyed mom and found that of the 133 that replied, 58 had a prenatal diagnosis. Moms were presented a variety of options concerning the pregnancy. 70% of medical providers discussed continuing the pregnancy with the patient. Termination was as option in 59% of the conversations, while adoption was presented only 22% of the time. Nearly a quarter of moms (26%) reported that there were no options presented to them. And THAT is reality. 

Personal beliefs aside, this is a much bigger issue.  Parents need information and support.  They need resources and connections.  They need to know that someone wants them to understand what is going on and that someone is going to provide them information and tools to move forward.

For as many awful diagnosis stories as I’ve read, I’ve also heard stories about wonderful medical professionals that followed the guidelines for presenting a diagnosis.  Responding to  their patient’s needs and desires.  Responding with resources, information and connections. Those are the stories that I hope become the standard practice. Those are the medical professionals that practice with compassion and understanding.

What will it take for medical professionals to see just how much their approach in these situations impacts a family?  

If you have had a diagnosis (birth or prenatal) consider taking part in our Physician Feedback Program or talking with your doctor about how that conversation impacted you and your family.

They Get It

Two years ago I needed support.  I was in the darkness and on a new path.  I just needed a bit of light to see the way and give me a boost of confidence to know that even on this new journey, I would find my way.

I needed to hear the words, “me too,” “YES!” and “Finally, someone really understands.”

I slung a net of hope out into the world and brought back in it some of the most amazing people I have ever (and never) met.  

Through the wonderful world of technology I have been able to connect, literally, with hundreds of moms from the other side of the city to the other side of the world. They have a great sense of what that new path holds, where it has been and what might be over the next hill or mountain. They get it.

Nearly 24 hours a day, 7 days a week, I can log on and know I am not alone in this journey of motherhood.  I can celebrate or whine.  I can talk about nothing just as easily as I can talk about everything important in my life. Nothing is too large or small. Someone will listen.

I am granted grace on the days my deeper thoughts are less than desirable. I am gifted with daily laughs and encouragement.  I am allowed to be me, warts and all. And this has made a difference.

The greatest gift in all this hasn’t just been fully selfish connections I’ve made.  In looking back, I’ve begun to realize the pure power in these connections.  The enormous strength in numbers, especially in times of need. The vast knowledge learned and shared by those not afraid to help out.  The incredible friendships built across miles that are deeply rooted in love and understanding.

Too often women are given a bad rap that drama will ensue when numbers in a crowd escalate.  This community, for me, is proof positive that when everyone checks themselves at the door and fully engages in community, wonderful, meaningful connections will bloom.   

Women need to stick together and for moms, that is even more true. There is too much to be learned from one another for the betterment of ourselves and our families to not do life together.

My life, today, is not really that different than I imagined it would be 10 years ago- a house full of crazy kids keeping me busy and a husband that loves me and supports my ambitions….But it is drastically different than the new life that I imagined just 2 short years ago.  And I believe my online family and the new moms I have the pleasure of meeting each day have made that difference for me. There is much to be said for friendships that transcend thousands of miles of space and even more for those friendships that are grounded in a life-altering experience of the most personal magnitude. Thank you, doesn't even seem enough.

I am more grateful than I can ever express how appreciative I can be for the women who open themselves up to be real and kind and caring.  It started with a bond of our children having Down syndrome, but has become so much more. 

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.

THE Ad

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! 

  Looking to make an end of the year contribution?  Click here to donate today!