Education Desk: Sometimes Special Kids Want Regular Treatment

Mar 8, 2016

School systems label children with disabilities as "special education" students. But sometimes, what those special children want more than anything is to feel normal.

Leigh and Josh Renken with their children (left to right) Miles, Oliver, Lorelai and Reilly
Credit Courtesy of the Renken Family

When you're in 6th grade, lunch is a lot more than a time for dining; it's a time for socializing with your friends -- even if you can't take the same math and science classes they do. Or maybe especially if you can't see them in math and science. But it doesn't always work that way.


"The hardest thing, as a parent, was last year coming to the school and coming in to visit my daughter during lunch, and seeing this whole table of children separated on the edge of the cafeteria, all of whom have varying disabilities. And to me, it was stark and outrageous," says Josh Renken.

 

He's the father of Reilly Renken, whose life has been a physical struggle from the start.

 

"Reilly's our oldest daughter. She's 13 years old, and she was diagnosed as failure to thrive when she was 6 weeks old. We found out she had some heart issues, and then from there found out she had a rare genetic abnormality," says Leigh Renken, Reilly's mom.

 

"It's common for children with genetic abnormalities to have delays, it's common for them to be smaller. She's had three open-heart surgeries, she's had four corrective eye surgeries, she has a rare form of epilepsy called ESES, where she has seizures around 80-90% of her sleep, while she's sleeping."

But her parents say Reilly has a spirit that shines through those disabilities.

"She's an extremely social, outgoing kid," Josh says. "She's cognitively been measured around age 3 or age 4 from an academic standpoint, but she's very much 13 in every other way. Loves Justin Bieber, especially his second album, or his latest album."

"I mean, she has special needs," Leigh says, "but all of my children would argue that they are just as special as she is. And that's kind of the goal, right? That's kind of what we're asking for for Reilly is that equal chance to fail or succeed and to be treated just as equally as any other student."

Students with disabilities have individualized education plans, known as IEPs, that specify what classes they'll take and what assistance they'll receive. Some, like Reilly, have an aide who stays with them throughout the school day. Josh Renken says these students -- the kids with 1-to-1 aides -- were clustered around a table far from the mainstream students on the day he went to have lunch with Reilly.

"All of our children have a choice of where they sit," says Jen Farnsworth, director of Special Education services at the Ball Chatham school district, where Reilly is a student. "We have made inclusion of all our students a priority, everywhere, every single component of their education is a learning opportunity for us. We do not, in any way, segregate our students, and we don't ever plan to segregate our students. Because that's not in our students' best interest."

Farnsworth is telling the truth, but so are the Renkens. Sure, they say, the kids have a choice. But some aren't verbal; some use wheelchairs. So how much of a choice do they really have? And with separate classes, even a separate area for special ed lockers -- it's hard to stay in touch with friends from 4th grade, where the lines weren't drawn so brightly.

Leigh Renken's Facebook post has been shared more than 260 times.

Last Friday, after this problem cropped up again, Leigh vented her frustrations on Facebook. "These children have had to fight and struggle just to grow up. Please don't make them have to fight for simple human contact," she wrote. Her post has been shared more than 250 times.

Reilly is back to having lunch with her peers, but her parents want all the kids to get that same chance.

"We're lucky that Reilly is naturally social, despite all the challenges that she faces," Josh says. "Most kids with developmental differences can't come home and tell you what is wrong or what they want. It's up to us parents, the community, peers...I think everyone has to play some sort of a role in representing their voice. And I would be remiss if we just let it go and just went with the path of least resistance, because that's what it is."