Middle schooler with Down Syndrome speaks out during Neurodiversity Month

With her red-hair thrown back in enthusiasm, a fifth grader made her way to the podium at the Milan City Council meeting.

Winni Russeau can’t vocalize many words, but she’s constantly communicating. When she’s at home her mother says they know what she wants without sign language or her speech generating device, since they know her so well. She often throws her head back to say yes, like she did when her mom asked if she wanted to speak to the council during Neurodiversity Week. 

Days later, on World Down Syndrome Day, Winni, her fifth grade teacher, and her mom talked with her classmates at Milan Middle School. 

“My message to them was basically that they don’t realize how much personal power they have to support their peers in reaching their goals,” Winni’s mom, Laura Russeau, said. “I’ve noticed in the musical – people are so in their own world. I just don’t think that they’re aware of their own potential, their power, the things that they can accomplish or do to support other people. Once they do know that, they are so eager and enthusiastic and it makes them feel good, too.”

Then to support Winni, who had been sick and missed some rehearsals, some of Winni’s classmates taught Ms. Allison Jordet’s class the choreography for Winni’s part in the Munchkin Chorus in the upcoming school play The Wizard of Oz.

Inclusion & Independence

Winni is a swimmer, a snowboarder, an actress, and she likes to be in the middle of everything.

Her former paraprofessional Jorge Penzien says she has a confidence about her that he credits to Winni’s mother who has invested in helping Winni try new things and explore ways to be independent – and the small close-knit community at Milan where she has grown up with the same group of kids, in an inclusion school where she attends classes with her peers.

Laura likes to call herself an inclusion advocate, and says her aim is to support her daughter, but says the side benefit is that it benefits everyone around Winni, too.

“She loves [acting],” said Laura, admitting that they have tried many activities as a family and not all of them were well-received by her tweenager. “She’s trying so hard to carve out a space in the musical.”

But, Laura said, she knows her daughter can’t do it alone and she longs for peers to take initiative to help her come on stage or leave the stage so Winni can have the independence of not having an adult always by her side.

“Then she’s able to do something she’s really excited about without adult supervision – something without an adult and para pro,” Laura said. “It supports her independence.”

Neurodiversity Month

Several months ago, Laura reached out to Milan Middle School asking the school to do something to recognize neurodiversity week from March 17 to 23.

“I suggested a week and they turned it into a month or more, celebrating all types of neurodiversity,” Laura said.

Milan Middle School Principal Jennifer Bookout understands middle school can be a challenging time as students struggle to discover who they are and to feel accepted. So, she decided to create Neurodiversity Month starting the first week of March and extending through the first week of April.

“We wanted to create more opportunities for students to understand and appreciate how different types of brains work—and to celebrate the unique strengths and abilities that each person brings,” Bookout said.

Student leaders

National Junior Honor Society President Franklin Barker said the 26 student members were tasked with the legwork behind Neurodiversity Month. With support from their advisor – and his mother, Math Interventionist Jennifer Barker – they created a series of PowerPoint presentations about neurodiversity, Down Syndrome, ADHD and autism, along with videos to teach students over four weeks. 

“I loved this experience,” Franklin Barker said. “I feel we’re helping raise awareness. I’ve even learned more about these different neurodivergences, too, and when you learn more you do better because you might be able to see more.”

National Junior Honor Society leader Jennifer Barker said she vetted a bunch of videos and compiled resources and then let students go to work.

“We decided that the first week we would explain the term neurodiversity – basically everyone’s brain is different,” Jennifer Barker said.

The week they focused on Down Syndrome, the video included interviews with several students who then played corn hole together. In the movie, Winni used her speech generating device to let her classmates know she loves Sprite, swimming and the movie Moana. Her friend Nathan Bennink, who also has Down Syndrome, helped her find some of the buttons.

“We’re all more alike than we’re different,” Franklin Barker said.

Jennifer Barker and Franklin Barker, along with Milan Middle School Principal Jen Bookout, also attended the city council meeting to show support for Winni and to provide information about what Milan Middle School was doing.

“We work really hard to create a space where all students—Winni included—can find connections and success and feel like they belong,” Bookout said.

Communication

Like other students at Milan Middle School, Winni is working to improve her self-advocacy and communication skills. She works with Katy West, a speech language pathologist, to improve her ability to use her speech generating device with an app called touch chat. West said right now they are working on accessing the first 100 core words when beginning to use language and learning to put them together in sentences.

First Communion:

When Winni was in second grade, Laura said another Milan Area Schools speech language pathologist Annie Babcock suggested a sign school app. Through signing, Winni was able to learn words to help her understand big ideas like forgiveness so that she was able to take the classes to complete her First Communion at Immaculate Conception Catholic Church. 

Laura felt that at first members of the church didn’t understand how much Winni could comprehend, but through sign language Winni was able to help people see who she was.

“You don’t know until you have a common language of sorts,” Laura said.

Sign language helped Winni’s parents communicate abstract ideas to her when their dog died. Laura signed, “He’s with the Lord.” Later when a friend’s cat died, Winni signed to her mom, “She’s with the Lord,” which made her mother excited because she felt like Winni had understood the concept they were trying to teach.

Community

Penzien was Winni’s para earlier this school year. Penzien, who grew up with deaf parents and a deaf brother, said he learned early to sign. While he sometimes signs with Winni, he said a big focus of their work is helping Winni use her speech generating device, an iPad with buttons she can press for different words.

“That’s truly her voice,” he said. “That’s the most important thing – who else will know signs if they don’t know sign language?”

Winni’s current para, Hannah Salazar, said like most students Winni strives to have peers and connection – and she finds that.

“She cannot walk down the hallway without getting her name called at least three times,” Salazar said. “She has a very kind heart and that’s what people love about her.”

Sometimes, Salazar said, Winni makes the middle school a kinder place. 

Winni waves and smiles at peers. Students slow down a little when she’s around and smile back. They look for ways to help her, give her five, cheer when she makes a goal in soccer. However, Salazar said like other middle schoolers Winni also has her struggles. She looks for a friend to sit by, gets frustrated with assignments, shows excitement when school ends.

“Everyone has their moments,” Salazar says.

Winni’s worth

“Even though you don’t speak, does your voice matter?” her mother asked Winni, at the Milan City Council meeting. 

Winni made sounds and signs and turned to wave at her principal in the audience.

“That means yes,” interpreted her mom.

“‘Cause you know your worth?” her mom added, “and that’s what we’re here doing this year; is shouting their worth. Sometimes they don’t have the words. It’s a challenge for a lot of kids with Down Syndrome to speak, but it doesn’t mean they don’t have opinions and they have unique minds and perspectives and it’s really important to learn what those are.”

“Over the last few months we were trying to get to the heart of: ‘What do you want the city council to build in Milan?’” Laura said.

“She wants a water park. It may be unrealistic, but it’s what she wants,” Laura said, as Winni signed — her hand swooping down to show a slide and spinning in circles to show a lazy river. Then Winni’s fingers bounced across her hand to show jumping on lily pads and finally she spread her arms wide to communicate she wants a flowrider so she can shoot the curl. 

“We appreciate the time and whether those things transpire, we wanted to make sure you guys know what’s in her heart,” Laura said.

Reporter Karen Lambert has previously worked with Winni at Milan Middle School and at Milan Children’s Preschool.