While Down syndrome may not often be talked about, “There are more than 1,500 individuals with Down syndrome living in the Mid-South,” says Martine Hobson, executive director of the Down Syndrome Association of Memphis and the Mid-South.
The Centers for Disease Control and Prevention (CDC) define Down syndrome as a condition in which a person has an extra chromosome, and the extra copy changes how the baby’s body and brain develop, causing physical and mental challenges.
“Many but not all people with Down syndrome share common features like almond-shaped eyes and short stature,” Hobson says. “However, like typical people who share similar features, they look more like their families than each other.” The CDC also named some other common physical features like a flattened face, short neck, small ears, a tongue that sticks out of the mouth, small pinky fingers that sometimes curve toward the thumb, and poor muscle tone.
There are some challenges kids with Down syndrome may face. “Ten to 15 percent of babies with Down syndrome have a severe heart defect that requires surgical intervention in the first month of life, and additionally, Down syndrome is one of the most common causes of intellectual disability,” says Hobson.
The cognitive delays can be mild to severe. Despite these hurdles, services like speech, occupational, and physical therapy can be a big help and allow the kids to excel. A pediatrician can be a great ally in working through any medical or behavioral issues that arise. “The most common thing I hear from new parents is the fear of the unknown and uncertainty, but once they start to get educated, their whole outlook changes,” Hobson says.
There is no known cause, and Down syndrome can happen to anyone. It is a misconception that it can occur if you are pregnant at an older age. “About 80 percent of children who have Down syndrome are born to women younger than 35,” Hobson says. There are other false beliefs as well, she adds. “It is a misconception that they cannot read and write, as the majority can.”
It’s important to know the resources that are available to you and use them. “Teaching reading is most effective when teachers are well-trained and have high expectations of students and their progress,” Hobson says. “It is advisable that kids with Down syndrome attend their public school, and it is required by law that the schools accept and provide appropriate education through inclusion with their typical peers.”
One of the largest messages that educators, advocates, and doctors alike want to deliver is that individuals with Down syndrome are people like anyone else. “We want people to speak of the person first and not about the disability; emphasize the person’s abilities and not limitations; treat the person with the same respect as everyone else; and let the person speak for himself,” says Hobson.
A great way for all people to unite around the cause is to support the 22nd annual Step UP For Down Syndrome 1-mile walk on October 6, 2019, from noon until 4 p.m. at Christian Brothers University. There will be entertainment, activities, and prizes. Funds raised at the walk go toward getting information and support to families affected by Down syndrome and assisting programs like New Parent Brunch, Reading is Key, adult self-advocacy, job placement, Pathways, inclusive summer camp, and tutoring.
It is important that Memphis parents teach their children to love and accept all people, regardless of their abilities. “People who have Down syndrome are always happy and more like typical people than they are different, as they have the same feelings, moods, and memory as everybody else.
“There are kids with Down syndrome working all over the city, and they do great,” Hobson says. “Early intervention, good health care, and therapies help your loved one with Down syndrome be the best they can be, which is what we want for our kids.”
Jamie Lober, author of Pink Power (getpinkpower.com), is dedicated to providing information on women’s and pediatric health topics.