Patients fill all but a few chairs in the waiting room of the dentist’s office. Some thumb absentmindedly through a magazine while others stare intently at their phone screens. One weary mother tries in vain to corral a bored and rowdy toddler.
Though you’re sure they’re all decent, friendly people in their day-to-day lives, the classic waiting room body language says they’re not interested in engaging in a conversation with the stranger sitting next to them.
The idea of being embraced by one of those strangers would likely fall somewhere between awkward and appalling.
Most people don’t give this scenario a second thought. They understand social boundaries and understand that touching strangers in a crowded waiting room is a no-no. They’d never walk around the room and tightly hug every person within reach.
But an individual with Down syndrome might. That’s what can make social interaction challenging – and often stressful – for these kids and their parents.
Thankfully, organizations like The Maren Fund
, a 2016 Spirit of St. Louis Women’s Fund grantee, can help.
With a portion of the funding they received from SOS, The Maren Fund purchased the Circles Curriculum, a tool that teachers and parents use to help the kids identify levels of intimacy and relationships.
For instance, Circles says your family is in your blue circle. You can hug the people in your blue circle. The mail carrier is in your orange circle. You wave at – not hug – the people in your orange circle.
While this may sound simple, a child with Down syndrome requires repetition and small pieces of material to process, absorb and retain information, said Julie Williams, executive director of The Maren Fund.
The SOS funding also allowed the nonprofit to help the parents purchase the Circles app. Now, when the parents and their children are out in public they can use the app to identify which circle people are in.
“It could be very common for a kid to hug everyone in a waiting room – we all really struggle with social boundaries,” Williams said. “The Circles Curriculum has really helped. We can show them beforehand who’s in your orange circle and they understand. Our goal is to help get parents to those tools to make it a lot easier.”
The Maren Fund operates several programs toward their mission of ensuring children with disabilities are valued and given opportunities to pursue full and active lives.
The grassroots organization originally started when Williams began searching for ways to help her own daughter, Annie, learn to read.
“I knew she was going to need extra support at home, but I was clueless on how to do this,” Williams said. “There’s a lot of research out there on how kids with Down syndrome learn.”
In her search, Williams discovered The Learning Program
, a parent/child focused program created by a mother in California.
The Learning Program of St. Louis, which offers classes for kids ages 2 to 15+, offers highly visual materials, lots of repetition, and bite-sized pieces of information. The program empowers parents to teach their children literacy, math and other skills using evidence-based materials and methods.
It was incredible,” Williams said. “We started learning.”
That was 10 years ago. The program has been so successful that it eventually made sense to start a separate organization. The Maren Fund was founded in 2011.”We started with 12 kids and as of this year we have 100 families doing The Learning Program of St. Louis classes,” Williams said. “Kids are reading and doing some fantastic things. Obviously, if you can unlock things like reading and math for our kids, they can pursue active lives. It unlocks a lot of opportunities for them.”
Lauri Koster, who enrolled her son Cal in The Learning Program of St. Louis when it first started, said it isn’t just the academic benefits that families come for – it’s the social and emotional support the organization provides.
The original group of kids who started The Learning Program of St. Louis graduated from the classes, which only go up to the fourth or fifth grade level. Those kids, including Annie and Cal, are now in middle and high school.
“We didn’t have (additional) Learning Program materials for them, but the parents wanted more,” Williams said. “What we realized was that as the kids were aging the focus shifts away from academics to life skills and job skills.”
Initially, the “Grad Group” as they’re called, focused on activities like reading a menu then visiting a restaurant, or learning to read dice then hosting a game night.
But the parents, teachers and Williams felt something was lacking in what the kids were able to get from their curriculum at school.”We wanted to get back to ensuring that our kids were getting academics and getting some good repetition of some of the basics that need to be covered,” Williams said.
The Maren Fund leadership wanted to launch a program called the After School Academy, a weekly session to focus on shoring up academics, language, social skills and life skills.
The $15,000 grant they received from SOS allowed the nonprofit to launch the pilot program of the After School Academy.
“Our kids need a ton of repetition in what they do to learn it,” Williams said. “It takes them longer to get it in their long term memory and apply it to life.”
The After School Academy pilot program included three six-week sessions – fall, winter and spring. The entire year focused on the theme of employment – what the student needed to do to be successful when they graduated from high school.
Teachers started by showing the students the basics of first impressions, such as grooming, vocabulary, introductions and giving compliments.
“We did a pre-test and a post-test and found that most of the kids went from about 50 percent up to about 80 to 90 percent being correct in their answers,” Williams said.
The Academy students also worked on social boundaries, using the previously-mentioned Circles Curriculum.
“A lot of our kids have trouble with those social boundaries,” Williams said. “That’s been a fantastic curriculum that you supported. We’ve been able to use that in all three sessions.”
They also worked on using the calendar and telling time. They had lessons in writing the date, and each student got to maintain their own planner.Some of the students may have already learned the Academy material in their classes, while others were learning it for the first time.
“If it’s not continuously brought back into their memory they’ll forget what they’ve learned,” Koster said. “The reinforcement is really important for our kids.”
The best part is, Cal loves After School Academy.
Koster said her son is so exhausted at the end of a school day, it wouldn’t be feasible to take him to a tutor. But the Academy makes the experience feel more social.
“They make it so much fun, and they build in dinner and manners,” Koster said. “If it wasn’t set up the way the Academy sets it up I don’t think I could get him out the door to do it.”
The funding from SOS allowed The Maren Fund to lower the tuition cost for parents, which was significantly helpful to many, Williams said.
“Without SOS, we wouldn’t have been able to even try this pilot with the After School Academy kids,” Williams said. “We wouldn’t have been able to see if kids really did need more regular academic, social and language support and to see if we could help fill this gap. It’s very evident that it is necessary.”
The Maren Fund does offer a scholarship option because they never want any child to be denied services for financial reasons.
They hope to host a more intensive version of After School Academy called Maren Prep this summer.”My hope and my desire is that we can continue to increase that academic base and make it stronger and more focused,” Williams said.
Story written by Bethany Prange of 618 Creative.