Becoming a parent (especially if it’s for the first time) can be an overwhelming and unsteadying experience, and new moms and dads need support, wisdom and empathy. And that’s even truer when your child is born with special needs. Parents of kids born with Down syndrome might panic, wondering how best to nurture and support their new little one from birth forward.
Kim Gilmore, mother of 4-year-old Sophie, joined the Down Syndrome Guild of Southeastern Michigan (DSGSEMI) when her only child was born in 2012. The organization is a 501(c)(3) nonprofit organization serving a community of hundreds of families affected by Down syndrome in the area. It is funded solely by donations and sponsorships.
DSGSEMI sponsors the annual Step UP for Down Syndrome Walk. This year, it will take place on September 23 at the Detroit Zoo. This is a family-friendly event and the fund pledges will go toward making and distributing New Parent Packets, parent support networks, informational resources and social events for people with Down syndrome. The walk raises not just funds but community awareness as well. That in turn helps promote acceptance in the community and visibility of people with Down syndrome when it comes to public policy, according to the event website.
“We are a group whose main goal is to spread awareness to local businesses, the medical field, schools and more,” Gilmore says. “We aren’t just for moms and dads. We’re also trying to get the public to see that it’s okay to have a disability. You are not alone. We serve everyone from before birth to old age who are affected by Down syndrome and all family members are included in what we do.”
After Sophie’s birth, Gilmore contacted Paulette Duggins, executive director of the organization, who visited Gilmore and provided a list of resources and an information packet. “As Sophie has grown I’ve become more involved as a volunteer,” Gilmore says. “Now I reach out whenever I can to new parents sharing my experiences, and letting them know it’s okay to be scared and worried but they are not alone.” She says this is one of the most fulfilling things she does as a volunteer.
“We aren’t just for moms and dads. We’re also trying to get the public to see that it’s okay to have a disability.” — Kim Gilmore
“A Down syndrome diagnosis is scary because no one knows what to expect with things like the health and education of their child,” she says. “I take Sophie with me when I meet new parents and let them see how she is thriving.”
“Sophie was in a special education preschool, but wasn’t really getting anything out of it,” she says. “Now she’s in a regular classroom and she has learned the alphabet, can spell her name and can count to 10 on her own. She can do pretty much anything if she is given time.”
Down syndrome was named after the doctor who discovered it, 19th-century British physician John Langdon Down, and is also known as trisomy 21. According to the National Down Syndrome Society website (ndss.org), it occurs when someone is born with an extra copy of the 21st chromosome. This is what leads to the short stature and almond-shaped eyes characteristic of most people with the syndrome, as well as a spectrum of generally mild to moderate developmental differences. It is the most common of the chromosomal syndromes, with about one in 800 babies per year affected.
“It’s just random, not from anything the parents did or didn’t do,” Gilmore says. “And our kids can do anything. The guild has such great organization for resources because if you look online for information, you’re going to find a lot of negative and scary things. You must set those aside and go with the positive.”