For women who desire to raise a family, the day you find out you’re expecting can be one of the most special moments in your life. You pick out baby names and nursery colors and start planning for your little one’s future. Each year, thousands of women have their special time overshadowed by news of an unexpected complication. According to the Centers for Disease Control and Prevention, about one in every 700 infants is born with Down syndrome, and about one in every 68 children is diagnosed with an autism spectrum disorder each year.
“One of the observations that we have some data to support is that while things like autism occur at the same rate in whites as in Blacks, the African-American population is often diagnosed later in age,” said Dr. Noha Minshawi-Patterson of Riley Hospital.
She added that disparities in access to care and awareness education may be the reason for the statistic.
“Some parents just aren’t as aware as when their child development has strayed from what is considered neurotypical development,” she said.
“We always try to help parents come to the realization, maybe not in that immediate moment of diagnosis, that their child is still the same child. They’re the same little boy or little girl that they fell in love with regardless of whether or not they have a diagnostic label on them.”
For three Indianapolis women, despite the initial moments of devastation, raising children with special needs has been a rewarding experience that they wouldn’t trade for the world. For each of the women, their support system has been the glue that’s held them together.
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As newlyweds, Jonique Burton and her husband had trouble getting pregnant, but they did eventually conceive. A blood test revealed Burton had no genetic issues, and she later learned she would be having a little girl, but something was wrong. The child had a growth on her neck that, upon further inspection, was found to be caused by Down syndrome. Burton said she was devastated. “It was hard in the beginning. We kept saying why us? What did we do wrong? We questioned God.
“Our house was very silent. We questioned each other, wondering whose family it came from. That’s something we often do in the Black community is blame it on genetics. But when you have a child born with Down syndrome, it is just the luck of the draw. It has nothing to do with genetics.” Burton and her husband depended on their faith to pull them through. “We are a family of faith, so I said, regardless of whatever extra characteristics come along, I’m going to deal with it. At that moment, God equipped my husband and me with what we needed to maintain.” Burton, who is a member of New Life Worship Center, said her pastor, John Ramsey, and his wife, Alicia Ramsey, were a major resource for her, as they’d experienced similar things with their second child, Jeremiah, who has a host of special needs.
The toughest part for her, she said, was the uncertainty of what the future held. Children born with Down syndrome can experience a variety of both cognitive and physical difficulties. “It’s like having a frog in your throat constantly when you think about it, when you’re pregnant and you have to go through every day wondering what life is going to be like once this child is born.”
Today, Jillian is 7 years old, and Burton says she has progressed well despite her challenges. Burton’s experience has also taught her a lot about herself. “I wouldn’t change her for anything in the world. She has made me and my husband better people. This had made me a better educator; I’m better on my job than I’ve ever been with other people’s kids.
“She doesn’t learn at the rate of everyone else, but she can learn. So no, she didn’t start reading and learning her sight words in kindergarten, but she is in the first grade and has picked up, and that’s amazing.
“I never thought my child would recognize words, but when we’re reading she’ll point out things. That speaks volumes to me. She even learned how to spell her name in two weeks. I will tell any parent that’s going through what I’m going through to keep the faith. It’s a must that you believe your child can do anything they put their mind to.”
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Eboni Jackson, another member of the New Life congregation, shared that her 21-year-old daughter Alexis, who has a mild cognitive disorder, is also a testament to what faith and diligence can do in the life of a child with special needs. Jackson and her husband noticed when Alexis was a toddler that she was not developing at the expected rate. “With her being the oldest, a lot of times people would say, once she gets in day care or once there’s another child in the house, she’ll move along quicker. It was when our second child, Damon, was born three-and-a-half years later that we noticed they were moving at the same pace.” This pattern, Jackson stated, became more noticeable when their third child was born two years later. In elementary school, Alexis was held back twice — once in kindergarten and again in fourth grade. Homework assignments that would take another student in her class 30 minutes to complete would take her three times as long, if not longer. Jackson decided to seek out alternatives, even moving to an entirely new school district to get Alexis the help she needed.
“We wanted to find a school system where she could grow. We knew that going off to college and things like that she would likely not be able to do; I wanted her to learn how to function as a teenager and as an adult.”
Her current classroom experience, at Brownsburg High School, has exposed her to life skills and occupational training, things that Jackson believes have helped boost her independence and confidence. “She has job coaches that take them out in the community and show them how to budget and treat them as if they were an adult. She’s learning how to do day-to-day things.” Through the program, Alexis has worked at neighborhood boutiques and bakeries and done assistant administrative work.
“I noticed an adjustment right off the bat with her … I think she finally felt as if she was able to be Alexis.”
Jackson said that Alexis also participates in the Guardian Angel program at New Life, which caters to younger children with special needs. “She has developed mainly because she feels important and needed, and there are so many times in life where she hears a lot of nos. She has a heart for kids; they cling to her. When she goes to church, she enjoys it because they love her for being her and don’t see her as someone with a disability. They just see Alexis.”
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Alicia Ramsey, an educator and the first lady of New Life, takes pride in the fact that her story and testimony have been a help to so many others. She often takes to Facebook to share candid videos and pictures of her and her son Jeremiah. Though he cognitively operates as a 4-year-old, Ramsey said there is little else that separates Jeremiah from other 15-year-olds. “He loves his peers. He enjoys social media, and he loves Beyonce. What 15-year-old young man doesn’t love Beyonce?” she said with a laugh.
Ramsey learned of her son’s initial diagnosis, agenesis of the corpus callosum — a rare disorder that is characterized by a partial or complete absence of an area of the brain that connects the two cerebral hemispheres — when she was 25 weeks pregnant. Soon after, her pediatrician alerted her that there were other things to be concerned about.
“I would find out things as the journey went along. That was one thing that my pediatrician told me from the beginning. She was an African-American female and God blessed me to have her. She took me to the side and said, ‘Alicia, it’s a wait and see.’” Eventually, the Ramseys learned that in addition to the agenesis distinction, Jeremiah also had epilepsy, mild cerebral palsy and autism.
“When we first found out, we didn’t tell our families, because I couldn’t deal with their questions. Once he was born, we told them a little bit at a time.”
Ramsey said the journey was rocky in the beginning, but research and preparation were two key factors in easing some of the difficulty. “Being an educator, I knew about special needs children. I worked well with emotionally disabled children; I knew all of that. But now, I was going to be on the other side of the table.”
She discovered the National Organization for Disorders of the Corpus Callosum and started attending their conferences. She learned a lot about what to expect and also what her options were. She also fought to make sure Jeremiah received the medical treatment he needed. To ease the $20,000-a-year financial burden of her son’s medication, she sought Medicaid assistance. She was initially denied through the state. “After the first time they denied me, I was hot. I thought this is so ridiculous, this is why people don’t deal with all of this, the paperwork and everything.” On her next attempt, they were approved. Beyond those challenges, establishing a home life that worked for everyone was tough, as well.
“This is where some parents get really discouraged. Medication, bath, bedtime, everything has to run like clockwork. Initially it was very hard because he didn’t sleep well. He would have really bad tantrums.” One of the low points she described happened during a spring break trip to California when Jeremiah was 6. “He melted down on the flight. He screamed the entire time. I remember I was so irate, because people were saying crazy things. I remember getting off the flight in Atlanta, and I carried him the entire way. We got our luggage, rented a car and drove home … There were years when he screamed for hours because he couldn’t communicate.” Ramsey said it’s important for her to share both the good and the bad with others.
In the end, she says, it’s about patience and understanding. “It pays off in the end; it truly pays off in the end. When you’re in it, you feel like it’s always going to be this way, but your faith gets you to say no it’s not. My faith kept telling me it was going to get better.”
