March 21 is World Down Syndrome Day. The numbers are significant: the 3-21 is meant to signify the triplication of the 21st chromosome which causes Down Syndrome. For parents and caregivers of children with Down Syndrome, it’s a day to honor the ways in which their child makes the world special. Extra Lucky Moms is a North Jersey-based support and advocacy group for parents and caregivers of children with special needs. Founders Taryn Lagonigro and Jess Quarello designed Extra Lucky Moms to give parents and caregivers a community of support. The Hoboken Girl spoke with Taryn and Jess to learn more about Extra Lucky Moms.
Taryn Lagonigro and Jess Quarrello were connected via a Whats App group set up by other moms of children with special needs. Both women gave birth in 2020 to daughters who were diagnosed with Down Syndrome (DS).
Jess, who lives in Hoboken with her husband and two daughters, said that the time following her daughter’s birth was incredibly lonely and scary. In addition to it being the pandemic, she was learning about DS, figuring out how to support her daughter, continuing to parent her other child, and healing from giving birth. “I didn’t even know where to start, I was totally overwhelmed,” Jess said. “It took me a few months to wrap my head around what we were going through and I reached out to a local non-profit called Rock the 21. The connection I felt with the other mom I spoke to made me feel more comfortable to reach out even more.”
^ Jess + Adeline
Taryn lives in Caldwell with her husband and four children. The women were in each a virtual support group for parents of children with Down Syndrome diagnoses set up by Stepping Stones, a school in Roseland NJ that is designed specifically for children diagnosed with Down Syndrome. They were ‘pen pals’ for a while and finally met in person in spring 2021. Jess says that the support and empathy she received from the other women was a huge part of her feeling more confident as a parent of a child with special needs.
Jess and Taryn talk about parenting children with special needs as the opposite of a one-size-fits-all experience. They felt it was necessary to create a place for people sharing that experience of trying to get a diagnosis for their child, how to feel after getting the diagnosis, or how to handle seeking the extra support needed for a particular diagnosis.
^ Taryn + Rhea
Taryn said that while her fourth child, Rhea, has Down Syndrome, she wishes that she had her current perspective on parenting the whole time “We celebrate so much more, even the small everyday moments, not just what society tells us to celebrate,” she says. “There is so much joy that [Rhea] has brought, it’s re-calibrated my views on motherhood and whats’ important.” Jess echoes the sentiment, saying that parenting her daughter Addie has made her a better friend and person. “I am living on a different wavelength then I was before Addie,” she says.
Read More: Disability Resources in New Jersey
About Extra Lucky Moms
While both Taryn and Jess are moms to children with Down Syndrome diagnoses, the group is meant to support anyone whose child has a life-changing diagnosis. “We found that there were so many disease-specific support groups, but everyone was going through the same or similar experiences, with medical appointments, different therapies, etc,” said Taryn. “The same ups-and-downs, extra worries, extra stress, but also the successes.”
The two women founded Extra Lucky Moms with the goal of providing community and support to parents of children with life-changing diagnoses. With Extra Lucky Moms, they want to offer a space for parents to connect over their shared experiences, learn from each other, and get resources and ideas. They also want to remind moms and caregivers that they are more than just that – being a whole, healthy person requires breaks and diversions from parenting. Despite the name, fathers, caregivers, loved ones, therapists, and others are welcome. “We love having people other than moms, it really adds to the perspectives shared,” Taryn said. “Everyone is welcome.”
Even the name ‘Extra Lucky’ is deliberate. Jess says that she hopes that someday, it’s something people all around use. “It’s just extra needs, no negative connotation, just the facts.”
Something that Taryn and Jess kept referencing was the group’s advocacy work. To them, advocacy happens any time a person learns more about a child with special needs or does something on behalf of a child with special needs. It can look like a neighbor asking the parent what’s the best way to interact with the child, or a parent asking for more speech therapy resources from the county. “We want people to know that everyone can be an advocate,” Jess said.
The group sells merchandise that is both a fundraiser and a conversation starter: the ultimate advocacy tool. Ten percent of the proceeds are donated to organizations that support parents of children with life-changing diagnoses. “Even wearing a bracelet that says ‘Extra Lucky’ can spark so many conversations,” Jess says. “In that one conversation where someone asks, what does that bracelet mean?’ we are raising awareness about rare disease diagnoses.”
As the organization grows, the women want to start conversations with people who can effectively make change. For example, Taryn shared that many children in the disability community have heart conditions in addition to their diagnoses. Many states can pass over someone with a disability for a heart transplant in favor of a patient who, on paper, looks healthier. “For us, some of that big stuff is not being afraid to have those conversations and call out where those injustices are.” Taryn anticipates that as their children grow there will be more engagement with the school systems. They’ve also been contacted by other parents facing challenges, and use the organization’s blog as a place to amplify their experiences.
Jess says the conversations are really the starting point for addressing many of these issues. “Sharing experiences and spreading awareness is how people get informed and involved.” Jess also recognizes that people have different levels of comfortability sharing their stories publicly, which is why it’s important to cast a wide net of support, even outside of the disability community. “Everyone advocates differently. One person might be comfortable sharing their own story on our blog, but someone else might prefer sharing tips on how to engage with the school board or ask for services. Both are important parts of the conversation.”
Taryn pointed out that when they call out a problem, they want to pair it with a call to action or offer a solution. “Sometimes advocacy doesn’t even leave the home,” she said. “Maybe it’s sending a template email to a lawmaker on a specific issue.”
^ Taryn + her daughters
Taryn said that to celebrate World Down Syndrome Day, she will be speaking to her other daughter’s Girl Scout Troop and another daughter’s daycare classroom. “All politics is local, which means that all change is local,” she said. “If we can talk to a few people, they can talk to a few more, and that’s how things happen.” Several women in ELM are doing the same or similar thing, so by the end of the day, several dozen new people and families will be informed about Down Syndrome. Jess said, “it’s such a micro thing, but so many kids will learn about Down Syndrome. We want them to know more about disabilities in the world. It’s ok to ask questions.”
Extra Lucky Moms will celebrate its first-year anniversary as an organization in April 2022. The women say how exciting it has been to watch the organization grow and realize its mission of providing parents of children with special needs with a supportive community. Despite launching during the pandemic, the group has hosted online events for parents and caregivers and provided a platform for parents to connect.
The group hosted its first in-person event in late February, and Taryn and Jess look forward to building on the success of that to hold more. The ‘Mom’s Night Out’ was held at Ethan and The Bean, 501(c)(3) nonprofit organization in Little Falls that employs people with intellectual and developmental disabilities in its coffee shop and art gallery.
^ At the event
The group regularly offers virtual get-togethers, which have included workouts and nutrition sessions. The goal of the virtual gatherings is to offer parents an easy, affordable way to get a break and seek community. They are excited about the prospect of more in-person gatherings.