Emily Kargel met Cindy Williams-McClung on her first day of kindergarten at Lake Elmo Elementary School in the fall of 2010.
Emily loved horses and art projects and music; she had long hair. Williams-McClung, the educational paraprofessional assigned to help Emily navigate school, loved horses and art projects and music; she had long hair.
The two were destined to become best friends, as Williams-McClung tells it.
Thirteen years later, the pair are still together. On Friday, they’ll don cap and gown as Emily graduates from Stillwater Area High School.
They are believed to be the only student/paraprofessional duo who have been together for all 13 school years in the Stillwater district.
As soon as you meet them, it’s clear the two share a special bond. “We’re girlfriends, besties,” Williams-McClung said. “I’m one of her posse.”
‘Believe in them, then they believe in you’
During teacher Jason Rohde’s Clay & Pottery class on Wednesday morning, the two worked together to make a rain lantern. The task required rolling chunks of clay into coils and then forming them into the body of the lantern.
“Can you do it on your own?” Williams-McClung asked as she guided Emily’s left hand with her own. “Back and forth, that’s right. We’ll get it a little thinner. Here you go, kiddo. Roll! Roll! You can do it. Good job. … Remember, then we do our song. ‘And we’re rolling, rolling, rolling.’ That gets her every time. We have a song for everything, don’t we?”
Emily smiled as she listened to Williams-McClung’s patter and broke into a wide grin when she started singing.
“If a child knows you believe in them, then they believe in you,” Williams-McClung said. “It’s that simple. It’s all in how you treat them — and people don’t understand that. People think, ‘Oh, they can’t learn,’ but they are as smart — if not smarter, in some ways — than any person in the world. Emily is a very smart little whip, I’ll tell you.”
Emily, 18, lives in Baytown Township with her parents, Mike and Kristy, and sister, Isabelle, 15. She loves art and music and has a great sense of humor. Her favorite musical artists are ABBA, Sara Bareilles, Jason Mraz, Pink, the Chicks and Katy Perry — in that order. She loves young-adult murder mystery books with crazy plot twists, the “Mamma Mia” movie soundtrack, the occasional shopping spree and getting her hair and nails done. She’ll be wearing a lilac dress with a lace-up back and tulle skirt to prom on Saturday night.
She’s not shy about letting her opinions be known. If she doesn’t like something, she will try to push it away, Williams-McClung said. “Or you can tell by her eyes, too,” she said. “A lot of it is her facial expressions. Huh, kiddo?”
Rare genetic disorder
Emily understands everything cognitively that an 18-year-old would understand, but “she just doesn’t have that ability to spit that back without us either asking her questions or putting an (eye-gaze) communication device in front of her,” Kristy Kargel said.
Emily was born with a rare genetic disorder on her sodium channel called SCN2A, which results in intractable seizures, dystonia and dysautonomia. She is not able to speak verbally or walk or move independently.
Kristy Kargel was 38 weeks pregnant when Emily was born in 2005 at Woodwinds Hospital in Woodbury. She was born via emergency cesarean section because she was in the breech position and because of a lack of amniotic fluid in Kargel’s womb.
“Her Apgar scores were 9 and 9, and there was no indication of any illness or anything being wrong,” Kargel said. “She slept through the first night, and the nurses had to wake her and attempt for her to breastfeed on me. She never really cried or indicated anything was wrong.”
Emily was 16 hours old when she had her first “witnessed” seizure, Kristy Kargel said. Nurses were giving her her first bath when she started convulsing, she said.
Five days later, she was diagnosed with what was believed to be bacterial meningitis and transferred to the neonatal intensive-care unit at Children’s Hospital in St. Paul, where she stayed until she was 28 days old. Less than 24 hours after being released from the NICU, her seizures started getting worse, and she was admitted to the pediatric intensive-care unit at Gillette Children’s Specialty Healthcare in St. Paul.
“The seizures had spiraled out of control,” Kristy Kargel said. “At her worst, she was having upwards of 1,600 in a single day.”
After multiple diagnoses, Emily underwent whole exome sequencing in 2014 and was diagnosed with the rare mutation of the SCN2A gene.
Like Helen Keller and Anne Sullivan
Emily was enrolled in Lake Elmo Elementary, which is not her neighborhood school, because the school had full-time nurses on staff who could help care for her, Kargel said. It was pure luck that Williams-McClung was assigned to be Emily’s sole paraprofessional on her first day of kindergarten, she said.
“Cindy always believed in Emily right off the bat,” Kargel said. “She believed in her abilities from kindergarten on, and Emily picked up on that. We could tell right away that the bond between them was unique. I would ask at each IEP (Individual Education Plan) meeting to continue to have Cindy assigned to Emily.”
It is typically the philosophy of a school district to have students work with multiple paraprofessionals, “so that students do not become attached or dependent on one person,” Kargel said. “So each school year, it is very common for a student to be assigned a new paraprofessional or multiple paraprofessionals that will split the school day with that student. They want the students to get to know other people.”
But Emily decided, at a very young age, to take matters into her own hands, Kristy Kargel said.
“She would refuse to work at school for other paraprofessionals,” she said. “She just didn’t respond well to other people. She’s very opinionated and when people don’t believe in her, she knows that, and she feeds off of that. … She made it clear that she wanted to work with Cindy and not share time with others, so I began to really fight for this unique pairing.”
Kristy Kargel compares the relationship between Emily and Williams-McClung to that of deaf-blind writer and activist Helen Keller and her teacher, Anne Sullivan. Keller “turned out to be an amazing person and did great things for the world, but she had one person who helped her along the way,” Kargel said. “I feel that Cindy has been the way to get Emily’s voice out. They do a lot of art together, so art is kind of their medium to express themselves.”
When it came time for Emily to attend Oak-Land Middle School in Lake Elmo, Emily and Williams-McClung decided to move up together. The same thing happened three years later when they made the move to Stillwater Area High School. “Here we are now, Emily is a senior, and Cindy is still by her side,” Kristy Kargel said.
Graduation day
When it came time to take Emily’s senior photos, Williams-McClung was invited to join in the photo shoot. The two went to prom together last year and plan to go together again on Saturday night.
“We went last year and we had fun, didn’t we?” Williams-McClung said. “We danced, didn’t we, Em? And boy did we dance! Are you getting excited for prom? We’re only taking one week at a time here. There’s so much stuff going on.”
Williams-McClung, of Downing, Wis., drives about an hour each way to get to and from the high school in Oak Park Heights. During COVID and when Emily was recovering from a recent leg surgery, Williams-McClung would drive to Baytown Township and work with Emily at her house.
She’s been working as a paraprofessional in the district for 30 years and also coaches the high school’s adaptive soccer team.
“I’ve always liked working with special-education kids,” she said. “It’s a challenge, but it’s a very rewarding challenge in the end, especially when you’ve gained their trust. After you’ve been with them so long, they know they can’t get away with anything. Once they trust you, you can do almost anything together.”
It’s been 50 years since Williams-McClung graduated from Park High School in Cottage Grove, and she’s looking forward to doing it again. “Thirteen years,” she said, shaking her head. “I made it through again. I can’t believe it.”
On Friday, she’ll receive an honorary diploma from Principal Rob Bach during the special-education graduation ceremony in the high school’s auditorium. It promises to be a poignant event, he said.
“You need people who are really prepared to just love kids unconditionally,” Bach said. “That comes through pretty clearly with Cindy and her approach. Knowing that Cindy wanted to stay with Emily and wanted to continue to foster that relationship is a pretty special thing, too. It speaks to why that exception was made.”
Nonverbal communication
The district has benefited from Williams-McClung’s long tenure and commitment to Emily, said Caitlyn Willis, the school district’s assistant director of student support services.
“Many individuals move on and they do other jobs, or they have other things that happen in life,” she said. “To have a relationship where they are together all through her time in school, kindergarten through 12th grade, is pretty unusual. We cannot provide that level of support and care and inclusion to students without people like Cindy.”
Through the years, Williams-McClung and Emily have been able to develop a nonverbal communication system “that is unlike anything I’ve ever seen,” Willis said. “They just intuitively understand what each other is saying and doing.”
The other benefit of having that long-standing relationship? Williams-McClung can walk into a classroom and immediately understand how to make it more accessible for Emily, Willis said. “That is a wonderful thing that comes with working with just one individual over time and really learning what it is they need,” she said.
The district has to perform a “balancing act” when it comes to pairing students with paraprofessionals, she said.
“We always, always want to support students with the paraprofessionals who know them and have a relationship with them — that’s always ideal,” she said. “When really beautiful partnerships and relationships come out of these student/para support models, we always try to encourage and sustain those relationships for students whenever possible.”
But at the same time, she said, district officials must try to build the capacity of other paraprofessionals to work with all students “so that, God forbid, if something should happen, in this instance to Cindy, or she went on to a different job, or just had a life incident, you have more than one person who knows and has a relationship with the child.”
Emily’s Epic Graduation Party
The Kargels are planning to host an open house next month to celebrate Emily’s graduation. They’ve rented the mobile ice cream freezer from Nelson’s Ice Cream, hired a cotton-candy vendor and have booked Fab Tap’s mobile “mocktail” bar. There also will be live music.
“We’re calling it ‘Emily’s Epic Graduation Party,’” Kristy Kargel said. “This is Emily’s big party. One day, Isabelle will have a big party, most likely at a wedding or some other special occasion.”
Williams-McClung and Emily are working hard to put the finishing touches on Emily’s artwork that will be displayed on the tables at the open house, Williams-McClung said.
Also displayed at the open house will be a poem that Emily wrote with the help of Williams-McClung during her freshman English class in May 2019.
“I wish someone knew what I was thinking,” Emily wrote in the poem. “How hard it is to let someone know what I need. I wish someone knew how I felt, whether it was feelings, happiness or pain. I wish someone knew I’m just an ordinary kid. I hear, I see, I feel like everyone else does.”
Next year, Emily will be a student in the school district’s Bridge Transition Program, a school-to-work transition program for students, ages 18 to 21, who have physical or intellectual disabilities.
Williams-McClung plans to go next year, too — “just to get her going.”
“I’m undecided what I’ll do after next year,” Williams-McClung said. “I’m just not ready to retire, truthfully.”
“I just love working with complex kids,” she said. “It all comes down to trust. If they trust you, they’ll feel comfortable working with you. Once you’ve gained their trust, they learn a lot better, a lot easier. It’s been so much fun.”
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