After I discovered my son, Wyatt, had Down syndrome when I was around 15 weeks pregnant, I knew I needed a community. I joined a secret group on Facebook, “Moms with Kids Rockin’ the Extra Chromosome.” We called ourselves “Rockin’ Moms,” and as the groups on Facebook grew, we became the ORMs — the “Original Rockin’ Moms.” Our children were born in 2012 or 2013, and these women, Down syndrome moms from all over the world, became more than just women also raising kids with Down syndrome. They became my family. We are there for each other through everything, and we are all fueled by a drive to make the world a better place for our loved ones. We love our kids, and we love each other. And it is from that love that the Down Syndrome Diagnosis Network (DSDN) was born.
The mission of Down Syndrome Diagnosis Network (DSDN) is to connect, support and provide accurate information to families with a Down syndrome diagnosis. Their goal is to create a world where all families would have unbiased, family-centered diagnosis experiences with up-to-date information and access to support and connections. Unfortunately, this is not always the case; in fact, it’s not even often the case. Research has found that only 11% of women who receive a prenatal diagnosis of Down syndrome report having a positive experience. Doctors are, themselves, often uninformed and undertrained; a study found that 40 percent of junior fellows found their training for a prenatal Down syndrome diagnosis to be “barely adequate or nonexistent.” In an anonymous survey, only 63 percent of doctors said they tried to be unbiased, whereas 13 percent of doctors admitted to emphasizing the negative aspects of Down syndrome so parents would elect for termination.
Mothers who receive a birth diagnosis don’t fare much better; instead of being told the news in a positive or neutral way, they are often greeted first and foremost with an “I’m sorry” and are not given resources and information to help get them on a good start to their journey with their little one with Down syndrome.
Eight of the “Original Rockin’ Moms” joined together to form DSDN in an effort to change this in 2013, and on May 21, 2014 — World Down Syndrome Day — DSDN was officially formed. In just two short years, we have been able to accomplish more than we could have ever imagined.
DSDN still connects families online through support groups, and in person through local Down syndrome organizations. When DSDN families have a challenging situation or are fighting a medical condition, DSDN is there to help. There are annual retreats for Rockin’ Moms, a physician feedback program to help parents give anonymous feedback to the doctor who delivered their diagnosis. DSDN also works with medical providers to ensure they have the most up-to-date information on Down syndrome, and are trained on how to properly deliver a diagnosis.
There is also the Rockin’ Family Fund, which focuses on four areas of support. New families receive a welcome gift, which includes a congratulation card and a welcome onesie for the baby. Families whose children are in the hospital receive care packages. Parents whose babies with Down syndrome have passed away receive memorial wind chimes in their child’s honor. And finally, the Rockin’ Family Fund offers scholarships for families to attend a Rockin’ Mom Retreat or a Down syndrome educational conference of their choice.
Multiple First Coast families are members of the DSDN family. Sheryl Lorentzen’s son Easton will be four in December, and has turned to the group for support; as her background is in Early Childhood Education, she has also frequently been there to answer questions for other Rockin’ Moms. Her older daughter, though, has begun to ask her what Down syndrome is. “She is beginning to wonder about Down Syndrome. I can’t recall exactly how she asked the question, but she wanted to know why he doesn’t talk so good yet,” Sheryl recalled. “I was explaining, albeit briefly, how it plays a part in that.” Her daughter’s response was to wish that she could have Down syndrome, too! “I was so suprised!” Sheryl said. “I tried the best I could to explain that it doesn’t go away and she can’t ‘have’ it. While I have not posted in the group just yet, I’m still just trying to wrap my head around how I can say to her, ‘well, Easton has Down syndrome, that’s why he… ‘. I will for sure be turning to the group.”
Rosa Texidor is another First Coast Rockin’ Mom. “I was lucky enough to join the Rockin’ Moms group shortly after its inception in 2013,” Rosa said. “Alvaro was only three days old when I connected with the group.” Afraid and desperate for support, the solidarity and compassion she received from the other moms made her journey smoother and easier, because they were invested in her journey with her son, Alvaro. “We are indeed a true online family and community of support,” she continued. “They understand my unique set of views and circumstances like no one else can, and they are walking the same journey with me. To see them grow and reach out to so many other families and connect them with our tribe has been pretty amazing as well. I am not sure I’d be the mom I am today if not for the input and wisdom of my Rockin’ Moms and the DSDN.
If you or a loved one has a child with Down syndrome ages 3 years old and younger, please visit the DSDN website at www.dsdiagnosisnetwork.org. Currently they are seeking donations to support their Rockin’ Family Fund, with the goal of raising $15,000 by the end of this year. You can donate to the fund here. You can also make a general donation here, to help fund their work with medical professionals.
You’ve got this, and we’ve got you.
