With ALL children, strength and joy is found in community. When you have a special needs child, reaching out is even more vital.
The birth of a child should be a joyous occasion. But for parents of babies born with developmental and intellectual disabilities, the moment of joy quickly becomes one of uncertainty, grief and fear. Suddenly, the many hopes, dreams and expectations that parents had for their child are gone. Instead, such parents can be left feeling helpless and alone.
But as mothers Sheila Moore and Alecia Talbott learned, sometimes it just takes one parent reaching out to another to tap into a whole new community of friends and support.
While a child can be diagnosed with a developmental or intellectual disability at any stage, many children show signs or are diagnosed at birth. That’s exactly what happened when Sheila Moore gave birth to her son and received the diagnosis that changed her world forever. Her son, Matt, was born with signs of Down syndrome, and when tests confirmed the genetic disorder, Moore and her husband were faced with a difficult new reality.
“Along with feeling grief, you feel guilty for having the grief,” Moore says. “You feel guilty for feeling sad for him not being the child you thought he would be.”
These complex emotions, Moore explains, were just the beginning of her uncertainty. As she wrestled with her desire to love her son unconditionally, Moore also found herself burdened with questions about what her family’s new life would be like.
“We had so many questions: What’s this going to do to our lives? How will it affect our family? What will the future look like?” Moore says. Like many parents of children born with Down syndrome, Moore feared a loss of normalcy — not only for her young son, but for herself and her family as well. Everything was suddenly unrecognizable. She felt at a complete loss, as if she had no one.
Creating a Community
Moore wanted to find a way to reach out to other parents as they dealt with the initial blow of a similar diagnosis. “Having experienced all that myself, I know what it’s like,” Moore says. “I feel like it’s important for families to have someone who’s walked a mile in their shoes.”
So in 1995, Moore helped found the Down Syndrome Association of Middle Tennessee (DSAMT). Its goal has been “to provide accurate information about Down syndrome and peer support to families in the Middle Tennessee area.” Today, the association runs support groups and programs for children with Down syndrome as well as for mom, dads and even grandparents. To this day, Moore finds that the initial interactions with parents who reach out to the organization were among the most meaningful.
She let them know that their emotions are common. She assured them “that it’s OK to kind of feel sad, but to still enjoy the baby as a baby, like any other child.”
Like Any Other Child
These words from a fellow parent can be the first glimpse of hope amidst an atmosphere of uncertainty and sadness. For Alecia Talbott, whose son, Ron, was also diagnosed with Down syndrome shortly after birth five years ago, Moore’s visit was the first ray of light in an otherwise bleak experience.
“After Ron was born, the nursing staff and doctors were acting funny,” Talbott recalls. “They seemed to just all feel sorry for me, to the point where I didn’t know if he was going to live or die.” Then, as part of DSAMT’s First Call Program, Moore came to the hospital. She came to tell Talbott exactly what any mother who has recently given birth needs to hear. “She came into the room, looked at Ron and said, ‘He’s absolutely beautiful. Congratulations.’”
A New Normal
After Talbott and her husband brought Ron home, they began to read testimonies of other parents of children with Down syndrome. They read stories of parents who said such things as: “Even if I could, I wouldn’t take it away. I’d never change anything,’” Talbott recalls. Back then, she admits to feeling this positive attitude seemed strange.
Then Talbott found out about Buddy Walk, a public awareness and fundraising event for Down syndrome families, happening in her area. She saw it as a perfect way for her family to start making its way into a new community. “I just felt like this would be a good thing, it felt like fate had led me to this,” Talbott says.
In just three days, the Talbotts raised $500. “It was just so overwhelming, the support we were getting,” Talbott recalls. “Being there and seeing all the people, learning about people I worked with who had kids with Down syndrome. All of a sudden, there was this whole new family.”
Ron was only 5 weeks old when Talbott and her family participated in that first Buddy Walk. After that, Talbott began volunteering regularly with DSAMT. Sure enough, her family began to settle into a new routine. “You don’t realize it at the time, but life happens, and all of a sudden you have a new normal,” she says. “I attribute the biggest part of our adjustment to getting involved with the community.”
A Network of Support
In the case of Moore and Talbott, one mother reaching out to another was the first step toward helping Talbott discover a community of support. Moore refers to their community as a “network,” in which there’s always someone to talk to, someone who has been there and will listen, and will try to help. When one family recently contacted her with concerns about a surgery their child was set to have at Vanderbilt, Moore was able to connect them to another family that had been through the same experience. These sorts of connections, she notes, make all the difference and strengthen special-needs communities.
Especially as a child grows up, that network is always there to address each new concern or uncertainty. “There are different milestones that we all cross when raising kids with special needs,” Moore says. “When you get to that point when the next crisis comes up, you need someone who listens and supports, someone who’s just a year or so ahead of you.”
Indeed, every member of the family has something to gain. Talbott’s daughter, Jovie, 7, looks forward to seeing her friends at community gatherings, many of them also siblings of children with Down syndrome. Talbott’s stepson, Ed, 18, has participated in DSAMT’s “I Can Shine” program, in which volunteers work one-on-one to teach children with Down syndrome how to ride bicycles without training wheels. “When it was over he said, ‘Wow, can I do this again?’” Talbott recalls. “It was a really great experience for him.”
A Family of Friends
“I don’t remember what day it was when I said I wouldn’t take it away,” Talbott says, now that Ron has recently turned 5. “But that day came.”
Moore’s son, Matt, is now 24. Moore is quick to note that even as her son grows into adulthood, there are still new challenges every day. The community continues to be a resource and a foundation for her family’s life.
In January 2013, Moore left her position as Executive Director of DSAMT to work as the Chief Executive Officer at The Arc of Davidson County, an organization that advocates for people with intellectual and developmental disabilities. When Talbott learned that Moore’s position was opening up, she knew she had to step forward.
Now, it’s Talbott who approaches and talks with new mothers as they embark on their uncertain and unexpected new futures.
“I recently talked to a woman who was pregnant,” Talbott says. “I said, ‘I don’t know what it’s going to be like for you, but Ron is in school, learning to swim, he climbs the fence in our yard.’” Armed with her memories of how difficult it was when she first learned Ron’s diagnosis, Talbott tries to assure new parents that they will find a sense of normalcy down the road.
“None of us know,” Talbott says. “We expect that’s part of being a parent and part of life.” Talbott can look back upon a time when her family’s future looked like an “empty hole.” Today, Talbott says she just wants to be able to keep giving new parents the guidance they need to believe in their futures. Her aim is to encourage them to seek out a community of fellow parents, where they are sure to find a true family of friends.
Ways to Reach Out
For families and friends of children and adults with Down syndrome:
The Down Syndrome Association of Middle Tennessee (DSAMT)
somethingextra.org • 386-9002
For families of friends of children and adults with developmental and intellectual disabilities:
The Arc of Davidson Country
arcdc.org • 321-5699
To find out about a Buddy Walk happening near you:
National Down Syndrome Association Buddy Walks