Inclusion is everything
Parenting children with special needs
Reilly Renken, 14, donned a black and red cheerleader uniform and cheered for the Glenwood Middle School 2016 football team this fall, and her parents couldn’t be prouder. “To others, it’s a middle school cheerleading squad – no big deal,” Reilly’s mother, Leigh Renken, says. “For us, it sums up everything we hoped for her.”
The hubbub of barbecues, birthday parties and extracurricular activities, Leigh says, are what parents of typically functioning kids take for granted – the easy part of family life. But for many parents of children with special needs, just being included in run-of-the-mill kid stuff, like casual play dates, is fraught with complication.
When Reilly was born with an unbalanced translocation of her genes, Leigh says the focus was on doing as much as possible to ensure Reilly’s health and development, including three heart surgeries and countless opinions of various specialists. However, as time has gone by, Leigh aims to surpass the goal of meeting Reilly’s medical needs. On top of good health, she wants her to have all the markers of a well-rounded childhood, especially social connection with other kids her age. When she looked at the picture of Reilly with her cheerleading squad, Leigh says, “I just started crying. For one second in that picture, you can’t pick out which of the kids has special needs.”
All together now
For as many warring viewpoints as there are regarding which treatment options are best for children with special needs, there seems to be a growing consensus around the benefits of inclusion in schools and community life. “A whole community has to say, ‘We’re doing our best to have inclusion everywhere,’” Natalie Patterson, mom of Quinn, 14, and Roslyn, 3, says. “It’s good for everyone because it allows both sides to build empathy.” Exposing kids at a young age to people who aren’t like them, she hopes, will help them be more accepting of difference later in life.
For the whole family, Natalie says, living joyfully means surrounding themselves with loved ones. “Being a special needs parent is overwhelming,” Natalie says, “but if you have a support system that includes a spouse and friends, they can pick you up along the way.”
Amanda Brott, chief operating officer at the Hope Institute for Children and Families in Springfield, says successful inclusion is all about normalizing interactions between children with special needs and their typically functioning peers, as well as navigating routine stops like restaurants.
Amanda says a group of students from the Hope Institute went to Pizza Ranch, and one student had a meltdown. Instead of reacting negatively, the staff at Pizza Ranch calmly helped the group salvage the situation by boxing up all the food. “Differences are all over the place,” Amanda says. “Just because someone might act differently doesn’t mean that’s bad or scary.”
Spencer Mullen, 21, attends Hope’s vocational program, where he works on everything from job skills to dressing and conversation. Mark and Kathy, his parents, like that Hope immerses its students in the community and helps normalize “difference.”
“If you have no firsthand knowledge of something, there’s always some fear and trepidation,” Mark says. Spencer has many friends in the Mullens’ small community – which centers around Virden, Girard and North Mac High School – in part because people have gotten to know him since he was a little boy. Mark says it’s a frequent occurrence, walking down the street, for Spencer to be warmly greeted by name by people he and Kathy don’t know.
Joining the group
For many families raising children with special needs, including the Mullens, events like the Special Olympics and team sports provide a way to connect with other families experiencing some of the same challenges they are. “Through all that we’ve met a whole group of friends that we never would have had,” Mark says. “The kids go to each other’s birthday parties – that gives them a peer, someone on their level.”
The difference between Spencer’s social connections and those of the Mullens’ two typically functioning older sons is that in the case of Spencer, Mark and Kathy say, parties don’t just happen organically. Parents have to get involved to make sure relationships are nurtured.
Natalie Patterson and Leigh Renken both help their kids make and keep friendships as well, and both say that’s a central concern for them as moms. Initial interactions between Reilly and her peers, Leigh says, can be awkward. “But the more she’s around them, the less awkward it will be.”
Leigh says parents of children with special needs want their children to be included with their peers, but they’re also worried. “You’re afraid they’ll be laughed at,” Leigh says. However, holding the reins too tightly might cause kids to miss out on the good stuff, like cheerleading. “If I never let her fly, she’d never get to experience that.”
Elizabeth Watson is a freelance media consultant in Springfield. In the process of interviewing families for this article, Elizabeth gained new insight into how to better instill joy in the lives of her own three children.