A sensitive time for parents

Knowing how it feels, woman celebrates Mother’s Day for those raising kids with disabilities
Norma Stanley helps her daughter, Sierra, as she walks to their kitchen in Decatur. Mother’s Day has always been a bit of a sensitive time for Norma Stanley. Her daughter, Sierra, who is now 30 and has a developmental disability, has no idea what Mother’s Day is. HYOSUB SHIN / HSHIN@AJC.COM

Norma Stanley helps her daughter, Sierra, as she walks to their kitchen in Decatur. Mother’s Day has always been a bit of a sensitive time for Norma Stanley. Her daughter, Sierra, who is now 30 and has a developmental disability, has no idea what Mother’s Day is. HYOSUB SHIN / HSHIN@AJC.COM

About 40 parents and children recently met at the AEI StartUp Factory in Stonecrest, where they were feted to a few hours of food, gifts, inspirational speeches and music.

Those few hours were a welcome respite for many of them — an early Mother’s Day celebration.

They are parents of children with moderate to severe developmental disabilities. Some have never heard the words “Happy Mother’s Day” from their children or gotten a bouquet of flowers or a box of candy.

Billed as “The Exceptional Parents Celebration,” the idea is the brainchild of DeKalb County resident and public relations consultant Norma Stanley, whose daughter, Sierra, 30, was diagnosed with cerebral palsy and microcephaly when she was 9 months old. Most birth defects are found during the first year.

Microcephaly is a birth defect in which a person’s head is smaller when compared to standardized charts. It can cause developmental delays and vision and mobility issues.

Stanley, 60, launched the event, formerly known as “The Exceptional Mothers Celebration,” five years ago to uplift and encourage mothers of children with special needs. This year, she also invited dads, who are raising children.

When Sierra was in school, her special education classes would send home cards they made, but Stanley knew that her daughter didn’t have an understanding of what that day meant.

“I want to keep them (parents) in a good space,” said Stanley. “This time of year is sensitive for me. There’s Mother’s Day and graduation. There are all these special times, but our experiences are not the same as other parents. We have to create them.”

Alfancena Barrett-Davis of Snellville has attended nearly every Exceptional Parents Celebration event. Barrett-Davis adopted her nephew, Villair Barrett, who has Down syndrome and moderate intellectual development.

“He doesn’t understand what Mother’s Day is about, but he will say it if he hears other people say it,” said Barrett-Davis, who adopted Villair at 11. He’s 23 now.

“It’s not something he could do on his own.”

Stanley’s event lifts her spirits.

“I’m happy that I can be recognized for Mother’s Day,” she said. “Norma lets us know that we are not alone.”

Parents of children with special needs or abilities may not feel there is much help, said Fiyah Oates, a psychologist and facilitator and case manager at University for Parents, founded by Essence magazine editor-in-chief emeritus Susan L. Taylor. The organization is a community collaborative designed to empower parents though education, inspiration and support.

Experiences vary.

“A lot of parents feel alone,” Oates said. “In some cases, they feel trapped. So even their circle of friends may start distancing themselves. If the child has behavioral issues, they may not want the child over to the house. It can be very isolating, and a lot of parents feel stressed out.”

Stanley’s event brings together parents and resources.

Every 4½ minutes, a baby is born with a birth defect in the United States, according to the Centers for Disease Control and Prevention. That means nearly 120,000 babies are affected by birth defects each year.

Stanley was looking forward to becoming a mom. She wanted her daughter to have a good life.

“I was determined she was going to have everything she needed to become a success,” Stanley said. “It didn’t work out that way.”

Sierra is her only biological child. A stepson alternated between living with Stanley and her husband, who died 10 years ago from a heart attack, and his mother, who lived in another state.

“I used to cry every Mother’s Day,” said Stanley, who had to quit her full-time job to care for Sierra. “My husband didn’t know what to do. Friends and relatives didn’t know what to say. It’s like they didn’t think about it. I don’t think they meant anything. Family and friends don’t know to rally around to provide extra support to help (mothers) stay positive that day. We may not say anything, but we feel it.”

Stanley was in labor for 17 hours. Doctors told her Sierra didn’t get enough oxygen during delivery. “They probably should have done a C-section,” said Stanley as she watched Sierra slide down from a chair and crawl into the dining room on her hands and knees.

When the new parents noticed Sierra didn’t reach certain developmental milestones, they talked to their pediatrician, who told them that children develop at their own pace. “I would hear from other parents what their children were doing and Sierra wasn’t,” she said.

Stanley has to take care of all Sierra’s hygiene needs. Lift her in and out of the bathtub and help her balance herself. When it’s time for bed, Sierra has learned to crawl up the steps on her hands and knees. She can take her clothes off, but not put them back on.

Stanley has three friends who help care for Sierra, but most of the responsibility falls on her.

Doctors say Sierra, who is mostly nonverbal, has the brain development of a 3- or 4-year-old. Stanley thinks it’s more like 12 years old, but “not your typical 12.”

Sierra seems happiest when listening to music.

She and her mom sit on the sofa and sing “Happy Birthday” or “Jesus Loves Me” as Sierra becomes animated, jumping up and down and grunting out sounds trying to sing along.

“She can sing those songs a million times a day,” said Stanley, smiling as she sang.

Today, Stanley still wants Sierra to have the best life she can, “whatever that might be.” Stanley also knows, though, that that means she has to take care of herself as well.

Added Stanley, “You have to understand the journey we’ve been on.”