Down syndrome parent support group offers solidarity in LA
Between 1979 and 2003, the number of babies born with Down syndrome jumped 30 percent.
By Vivian Lopez –
Several years ago, Mireya Romero set out to find a community of people just like her: Spanish-speaking parents of children with Down syndrome in the L.A. area.
It’s a very niche community, so when she couldn’t find what she was looking for, Romero took matters unto herself. She approached the Down Syndrome Association of Los Angeles and started the Amor y Fortaleza (Love and Strength) Down Syndrome Support Group.
Currently made up of 25 families, the group meets monthly at The Salvation Army Los Angeles Red Shield Community Center, led by Executive Director Irene Lewis. The group includes three components: education, social support and recreation.
“The purpose of the support group is to provide parent-to-parent support for our families, in addition to creating awareness of the fact that our children have Down syndrome and that they are part of the community,” Romero said. “For me, as a mom, it’s been a blessing because these families really understand where I’m coming from.”
At the meetings, the kids do arts and crafts while their parents check in with each other. They have time to share positive highlights of the month for their family and receive tips and resources—usually through a guest speaker—about system navigation and child development. Topics include accessing in-home support services, regional center information and self-care for parents.
“They learn, ‘OK, yes, my child has Down syndrome, so let’s learn about it and how it can impact their lives,’” she said. “My hope is that through the educational piece they learn how to advocate for their children or loved ones, and that they are able to access services.”
As part of the social component, the group hosts events throughout the year, celebrating holidays and special occasions together.
“We’re more than a support group—we’re a family,” Romero said. “We attend each other’s birthday parties. We participate in important dates of our loved ones. We help each other; we take care of each other.”
The third component, recreation, is all about getting the parents involved in their communities by going to the park together, as well as participating in the Down Syndrome Buddy Walk and other events. Romero hopes that through all of this, the stigma of Down syndrome will be eliminated.
“I want them to learn to see their child as an individual, and not as a person with Down syndrome,” Romero said. “To me, Down syndrome is secondary, so my hope…is always for them to know they have a child…Our loved ones with Down syndrome are vital to our community, and they are part of a bigger society.”
Cecilia Granados, who joined the group in 2013, said the parents in the group are always there for her and her family.
“I love the solidarity we have in helping one another, and giving each other unconditional support,” Granados said. “It’s a simple diagnosis, but our kids will be able to live their lives like any other children.”
Leticia Osorio started attending the group eight years ago, when her son was just six months old.
“It’s one of the best opportunities to learn from other parents who know more,” Osorio said. “No one will understand us better than other parents of kids with Down syndrome. That’s the best part of this group—to feel like we’re not alone in the journey.”