How a Mom Became an Advocate ... And You Can, Too

When her daughter, Darcy, was born nine years ago with Down syndrome, West Towson mother Alana McFall says she “dealt with every stereotype.” McFall was told Down syndrome babies “are so nice,” and since McFall was a special educator she’d be able to “handle” all of Darcy’s “lifelong challenges.”

“The way they were describing her, I thought: ‘No,’” McFall remembers. “I don’t want a kid who’s a puppy. I want a whole person. This kid is going to [grow up and] get a job.”

From that moment, McFall says, she made a choice to see her daughter as a capable person with unlimited potential. “It was a hard choice and it was a conscious choice” that was perhaps counter-intuitive, McFall says. “We want to protect our children, especially the ones we think are more vulnerable.

“But,” McFall insists. “That’s the worst thing you can do.”

McFall, who now consults professionally and teaches future special educators at Towson University, says parents and educators can set the bar higher by focusing on potential. But this must start before school starts. “So much depends on what [parents] choose to do — or not do — very early on,” McFall says.

As Darcy grew up, McFall met other families whose children had Down syndrome, and by the time Darcy reached preschool, McFall says friends frequently called her to “help advocate [at school.] I’d go to meetings with friends, I’d work with the school and families.”

At these meetings, McFall says she recognized an “overarching theme” to parents’ frustration. “I saw the same story repeating itself over, and over, and over again. Parents were calling me in moments of desperation, when the situation had already become overwhelmingly complicated.”

Often, McFall says, parents call her to help “when the school is pushing for an IQ test.” Schools often administer this test when children are in third grade as part of a process to help parents decide whether their child should pursue a “certificate” or a diploma.

“Third grade is nine years old,” McFall says. And for some kids, eight. She says both ages are far too young for anyone to determine how successful a child will be in school. “This seems desperately wrong to me,” she says. “If a child takes the diploma track, they’re not guaranteed a diploma, but if they don’t do the diploma track they’re 100 percent guaranteed to not get a diploma. People live up to the expectations we give them.”

The frequency of Down syndrome is one in 691 live births, according to the Centers for Disease Control. People with Down syndrome are born with 47 chromosomes instead of the usual 46. According to The Arc, a national advocacy group for people with developmental disabilities: “the majority of children with Down syndrome have mild to moderate intellectual disability. However, while some show no sign of having an intellectual disability, others may have severe intellectual disability.”

Now, McFall is sharing the lessons she’s learned about early advocacy in a class, which will be held this spring at The Arc in Towson. McFall’s topics are wide-ranging and include: “The Pain-Free IEP;” “Marketing 101: presenting your child in the best light;” and “Rights and Responsibilities: holding yourself, your child and others accountable.”

“People need more information,” McFall says. “The decisions parents are making about their child’s educational trajectory are made from a place of love, but not from a place of knowledge.” To help their child succeed, McFall contends, parents need both.

McFall shared her best advice for getting the most out of your child’s preschool years.

  • “Personality before diagnosis.”

Parents can begin to reject stereotypes by using “people-first language,” McFall says. “Personality before diagnosis. At the end of the day a medical diagnosis is just that: a diagnosis. We don’t [always] need to announce it. You know your child. If it’s not vitally important [to share a diagnosis,] like when you’re signing them up for gymnastics, you don’t have to. If it is, like if you’re signing them up for summer camp, and you know your child will need extra assistance, tell people. Talk about our kids as people, from before they’re born even: from the moment of discovery.”

  • “Ask for speech services right away.”

Most children diagnosed with Down syndrome will be offered physical and occupational therapy, McFall says. But she adds, “Speech and language services are the most important. Generally you’ll hear, ‘oh, she doesn’t need them till age two.’ No. It’s too late. Babies learn speech in utero. If you wait until two, you have already lost years of opportunity.” Although parents will need to “pick and choose their battles,” McFall says: “this is the one to fight for.”

  • Increase your chances for school inclusion by focusing on toilet training and behavior before school starts.

“All the research shows that having a child fully and meaningfully included in school is better for kids with Down syndrome — and all the other children in the classroom,” McFall says. “There is zero evidence that a separate environment is good for kids. All the research supports inclusion. All of it.”

But kids can get taken out of an inclusive school environment, McFall says, for reasons that may surprise parents.

“What tends to get our kids noticed,” says McFall, “is not necessarily the academic issue. Teachers are great, but when there are 25 to 30 other kids in a class, the things that are attention grabbing are toilet training and behavior.”

Behavioral expectations at home, McFall says, “should be easily translatable to the classroom.” When Darcy started kindergarten she told Darcy’s teacher, ‘this is what we’ve been doing, and this is what she responds to.’”

McFall says these two areas will help parents “keep kids in a regular classroom.” There, she says, “kids have a better shot at having a better education, and being more widely accepted.”

Alana McFall can be contacted at alana@alanamcfall.com. Parents of kids age 0-5 with Down syndrome can join her Facebook group “Starting Strong” for more information about her class.

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