Earlier this school year, 11-year-old Maddie Fragner stood before her elementary school class and bravely told her personal story.
Maddie, who lives in California, has cerebral palsy (CP) and uses a reverse walker—the support structure is behind the person using the walker, which also has a seat; the handles are at the person's side like a regular walker—to get around. She had felt left out and bullied the previous year, so her new teacher suggested she talk to her classmates about herself and her disease. Despite her fears, Maddie accepted the challenge—and the results were immediate and positive.
“At recess, a steady stream of children Maddie didn't know wanted to engage with her and befriend her,” says Debbie Fragner, Maddie's mother and the founder of Children's Cerebral Palsy Movement. “That was incredibly encouraging and uplifting for her. She came home on cloud nine, knowing she'd done the right thing.”
PUSHING FOR INCLUSION
Decades ago, a child with Maddie's physical challenges might be sent to a special school, a place where she would see other children like her—all with physical, emotional, and intellectual disabilities. Nowadays, many children with special needs, including neurologic disorders, are “mainstreamed,” sent to schools where most students have no such challenges. In fact, more than 90 percent of students with disabilities are being educated in “mainstream” schools, with more than half of those students being included in general education classrooms for at least 80 percent of the day, according to a 2016 report by the National Center for Education Statistics.
Still, challenges persist for students and families, especially since each student's experience is different and one formula does not fit all. But Sara Jo Soldovieri, manager of inclusive education policy and programming at the National Down Syndrome Society, encourages families to persevere. “Sometimes it takes a while to get it right, but I push for every student I work with to be in an inclusive setting,” she says. “You may have to try a lot of things before it clicks, but when it does the results are absolutely phenomenal.”
The promise of phenomenal results is what motivates Sarah Watts to prep her 4-year-old son Henry for learning in a mainstream classroom. Henry has spina bifida, which has resulted in partial paralysis, low muscle tone, incontinence, and hydrocephalus. He does not have any speech or developmental delays and is on track intellectually, if not a bit ahead, Watts says.
“He happens to have this diagnosis, but he's also functioning appropriately for his age. If he were low functioning and needed a lot of intervention, a mainstream class probably wouldn't work,” says Watts, who lives with her family in Illinois.
The other students in Henry's pre-school class are accepting of his leg braces and his wheelchair. “We haven't had to prep them. Kids this age are curious, but they're also very matter-of-fact. Their attitude is, ‘This is just how it is. Henry uses a wheelchair,’” Watts says. “It's nothing abnormal to them or us.”
Henry will start kindergarten next year in a mainstream classroom. The only question is whether he'll attend a half or whole day. Through his Individualized Education Program (IEP), he has an aide and other services. And at age 4, he's not worried about his differences.
“We talk to him about his disability, but he's not that interested in it and we don't have long conversations about it,” Watts says. “He's still trying to understand what it is. The other day, he said, ‘When I'm 15, I'm going to be really hard to carry.’ And I said, ‘We're not going to carry you at 15. You'll use a wheelchair or a walker.’ He said, ‘Did you need a wheelchair when you were 15?’
“We treat it as though it's a normal, non-issue,” says Watts, adding that she hopes her son's peers will be just as accepting of his differences as they get older. “We hope they'll think, ‘Here's another way for someone to live his life.’”
Thanks to early intervention, supportive one-on-one aides, and an inclusive environment, Olivia Ames, now 21, enjoyed her elementary school years in a mainstream environment. Olivia has Sjögren-Larsson syndrome, a rare genetic disorder that can cause leukoencephalopathy, a white matter disease that results in spasticity in the legs and intellectual and developmental disabilities.
“The school district was very accommodating. I feel we lucked out in that respect,” says Olivia's mother, Stephanie Sawyer-Ames. “Another reason I believe they were supportive was because of the physical aspect of my daughter's condition. They couldn't deny any part of it, unlike people with more hidden disabilities.”
High school was more challenging, Sawyer-Ames says, because “as kids get older, they can be less inclusive. As a parent, there are a lot of things you can control. You can help with schoolwork. You can get tutors. But you can't force people to be friends.”
But parents can facilitate friendships. In high school, Ames joined Social Butterflies, an activity group that paired typical students with students with disabilities. The family also got involved with the Boston-based nonprofit group Partners for Youth with Disabilities. Founded in 1985 with the goal of matching young people with adult mentors, the program has grown to include a theater program as part of a high quality arts education. In 2005, the group also established a national center to extend its reach across the country.
“It's through this group that Olivia made some really good friends,” Sawyer-Ames says. “Kids in school were good about helping, and she was never bullied, but she wasn't asked out on weekends, either. All throughout school and then in college, she was always the only one with a physical disability. When she attends Partners for Youth with Disabilities events, she loves the fact that she is among other people with disabilities.”
Debbie Fragner says she and her husband hesitated before sending Maddie to a mainstream school. She spent her first three school years in specialized programming and thrived. What pushed them was the desire to put her on a diploma path. Although the mainstream path has been a bit rocky, both socially and academically, Maddie's biggest challenges began when she was in fourth grade.
“At a certain grade level kids, especially girls, go from being sweet to being kind of mean and cliquey,” Fragner says. “Maddie's differences, including her inability to stand, walk, and climb, led to her being excluded by many of her classmates at recess. It was hard on her and she often came home crying. Throughout the entire school year, she had only one friend.”
This year, Maddie's fifth grade teacher, the father of a special needs student, suggested she speak to her classmates about her disability, something his own son has done many times with great success. She was scared. Her parents were worried. But they decided to give it a try.
“Maddie was very clear that she wanted to do it in her words and on her terms,” Fragner says. “The only thing I injected was a brief child-friendly description of CP.”
A video of Maddie addressing her classmates can be found on the Children's Cerebral Palsy Movement's Facebook page at http://bit.ly/Maddie-CP. It shows a slim girl with a straight, light brown bob facing rows of seated students.
“Hi! My name is Maddie,” she begins. “You may notice I need help walking …”
In the two minutes that follow, Maddie defines CP as a disorder that affects how the brain communicates with muscles, meaning those with CP often have problems with balance or walking. She assures her classmates that her condition is not contagious. She then turns from her limitations to her interests: riding horses, swimming, learning ballet, drawing, and writing stories.
“Now you can see that I am just like other kids and want to be included and have friends like everyone else, even though I may not be able to do things like go on the jungle gym or walk superfast in my walker,” she says. “I hope you all will want to be my friend this year. I really want to be yours.”
Since that September speech, Maddie has had seven invites to join classmates for activities after schools. In the four years before, she received two.
She was also, for the first time, given a sizable part in her grade's annual play. She played Belle, Scrooge's first love, in A Christmas Carol. She shone on stage, her mother says.
“Before, teachers thought her diagnosis would get in the way of her taking on dramatic roles. But this teacher, who has believed in her since the beginning, gave her a meaty role. Within three days, she had memorized her lines and was over the moon,” Fragner says. “If you ask Maddie, she'll tell you this is the best teacher and the best year ever.”
8 Steps to Mainstream Success
The more proactive you can be on your child's behalf, the more likely your child is to thrive in a mainstream setting. These strategies can help.
1. Create a village. That's the advice of Pat Furlong, president of Parent Project Muscular Dystrophy, a nonprofit group in Hackensack, NJ, devoted to finding a cure for Duchenne muscular dystrophy. Furlong's two sons both died from the disease in their teens. She urges parents to find services that can provide physical and cognitive therapies, connect with organizations associated with the disease, and use social media to find families with similar challenges.
2. Start early. Many people fail to reach out to social services and support groups right after a child's diagnosis because they're overwhelmed and going through a grieving process, says Furlong. “It's not that you don't want to say the name of the disease out loud. It's that you can't. Once you get through that and you're able to see a world ahead, you will find others.”
3. Become an expert. Learn everything you can about your child's diagnosis, including its unique presentation and effects on learning. Familiarize yourself with your child's rights as defined by the Free Appropriate Public Education (FAPE) act, says Debbie Fragner, executive director and founder of Children's Cerebral Palsy Movement. “Too often, uninformed parents with special needs children simply accept the services and support offered to them by their school or school district without standing up for what they know their child needs,” she says. “If you effectively position yourself as an expert on your child and his or her needs, you will be more likely to get the appropriate services and support.” Piper Paul, a child's rights attorney in Norwalk, CT, recommends that parents learn more about legal rights under Section 504 of the Individuals with Disabilities Education Act and through the Americans with Disabilities Act. For a general introduction, she suggests visiting WrightsLaw, a special education law and advocacy site, at http://wrightslaw.com.
4. Find the right school district. Not all school districts can accommodate every child's needs. “I had one principal say, ‘I know what the law is, but I don't have enough money to pay my teachers to do what we need to do. Our school district is broke.’ He was very honest,” says Bruce H. Cohen, MD, FAAN, professor of pediatrics at Northeast Ohio Medical University and director of the NeuroDevelopmental Science Center at Children's Hospital Medical Center of Akron. “I've had patients sell their homes to move to a different school district in order to obtain excellent inclusion services or specialized non-inclusion services,” he says. “It sounds extreme, but when you consider that some outstanding autism programs are valued at $70,000 a year, the educational and financial benefit to the family is profound. If you live in a $150,000 home and are able to move to a $200,000 home in a district that can accommodate your child, it may be cheaper—and a better education—in the long run.”
5. Develop allies. Make nice with school officials and teachers, suggests Ann Henderson Tilton, MD, FAAN, professor of clinical neurology and chief of the section of child neurology at Louisiana State University Health Sciences Center in New Orleans. “When I sit down with a family, I emphasize that you gain more with honey than vinegar,” she says. “It's critical not to be adversarial.” Child's rights attorney Paul agrees. “Be sure to share information regarding the specifics of your child's disability as well as what works at home to reinforce and motivate learning,” she says. “Keeping the lines of communication open is instrumental to effective collaboration.” Paul also says you'll be a more effective advocate if you can take the emotion out of the process.
6. Encourage play. Do what you can at home to make the school day easier. For example, children on the autism spectrum, especially those under age 6, benefit from simply playing with their parents, says Yolanda Holler-Managan, MD, FAAN, a pediatric neurologist at Children's Hospital of Chicago and assistant professor at Northwestern University Feinberg School of Medicine in Chicago. “You would be surprised how many parents have never played with their children,” she says. “Play is how younger children learn social and cognitive skills.” She suggests board games like Chutes and Ladders, which require taking turns and learning rules; coloring books to improve fine motor skills; and slime or Play-Doh to help with tactile sensitivities.
7. Learn to say thank you. Not once, but over and over again, says Furlong, who advises parents to thank everyone in sight. “The more you thank people, the more willing they are to give, and you're going to need a lot of giving.” Any small gesture—a note, cupcakes for the class if allowed—can make a difference, she says.
8. Invest adequate time. “Caring for a child with significant challenges is a full-time job, and it's often frustrating and difficult,” says Furlong. “Identifying a team of individuals who are capable and willing to help you navigate the challenges requires bidirectional communication and respect—and the shared goal of an optimal educational experience.”