I sit in the elementary school conference room with my cornucopia of snacks and a throbbing headache. I recognize faces. I know their names and their role in our lives. But I don’t know what they believe a child with Down syndrome — like my son Charlie — is worth.
I want to trust them, but I am forever wary. The initiation mantra for every mother of a child with a disability rings in my ears: “No one will advocate for your child like you will. No one.”
The team assembled must make decisions that will forever affect the trajectory of my son’s life. In several months, in another Individualized Education Plan (IEP) meeting like this, we must decide if Charlie will have the opportunity to earn a high school diploma.
This is ridiculous, I think. He’s four years old.
The day before was unseasonably warm for Charlotte, North Carolina, so we went to the playground: Charlie; our daughter, Emma, who is 3; and our littlest, Liam, just 15 months. Each ran, fell, climbed, and fell again. Playground equipment doesn’t discriminate — it’s up to you to decide how you conquer it.
Other children arrived. They also ran, fell, and climbed. Side by side, all of them. No big conversations about, “Hey, you’re different. Why is she wearing glasses? Why does he have a hearing aid? Why can’t that one talk even though he’s so big? Why does she get to go on the swings just like me?” Kids don’t care. Get out of the way. Give me my turn. This is my playground. This is my shot at fun.
Shouldn’t every child be able to embrace and conquer education the same way?
The itinerant resource teacher for my son’s Exceptional Children’s program (the name for our school system’s special education program) says she is “torn” about whether Charlie should be in a self-contained or general classroom. A self-contained room includes only children with special needs and no chance of a diploma, while a general classroom includes typically developing children. She worries he won’t get the most out of the classroom experience because the other kids will distract him. Take him off task. He won’t thrive academically.
I’m not worried about his academics. That will come. Right now, it’s critical he learns how to focus on a task even when distractions exist. He needs to learn to share and play and interact with “typically developing” kids, as he does in his inclusive class this year.
“Oh, he interacts with them,” the teacher assured me. I understand what she means; yes, the kids play together. But I want more, because I know their existing interactions are limited and challenged by Charlie’s speech delay. Charlie wants more. When he stands in front of another little boy and screeches to get his attention, that is Charlie saying, “I want to play with you but I don’t know how to say those words, so I’m yelling because hopefully you’ll get it!” Sometimes they do. Sometimes they don’t.
“IInclusion isn’t something you do,” explained Lisa Dieker, referring to the practice in which children with special needs are included in general education classes. “It’s something you believe.”
Dieker has a college-aged son with Tourette syndrome and a learning disability. She has worked with elementary and high schools nationwide to adopt inclusive practices and laughed when I asked her for research on its effectiveness. “It’s fascinating that people want data to show [inclusion] works,” she said. “Did we do research studies to prove Brown vs. Board of Education?” To her, and many other inclusion advocates, it is a basic civil right.
And for people with intellectual disabilities, the stakes are very real.
According to a national study commissioned by the Special Olympics, only 34 percent of people with intellectual disabilities are employed. What’s more, the survey showed that most people with intellectual disabilities work part-time and often earn less than the minimum wage.
Inclusion could, if done well, improve these odds. “Students with disabilities in inclusive classrooms show academic gains in a number of areas, including improved performance on standardized tests, mastery of IEP goals, grades, on-task behavior, and motivation to learn,” reported Wrightslaw, citing a 1995 report from the National Center for Educational Restructuring and Inclusion. Two years later, researchers Gary Owen Bunch and Angela Valeo wrote, “Special education placement for students with disabilities has failed to demonstrate substantive advantages over regular classes, despite lower teacher-pupil ratio and specialized teaching.”
Though these observations were made in the 1990s, they have yet to be implemented widely in United States classrooms. Though a majority of students with disabilities today spend at least part of their school day in general education classrooms, many of these students are sequestered in a corner, not fully participating in the class.
“A child who is not included in general education classes is missing out on the full-range of educational and social experiences that prepare other students to be as successful as possible in their adult lives,” said Ricki Sabia, who creates national resources on inclusion for teachers and parents and is senior education policy adviser at the National Down Syndrome Congress. “As hard as inclusion can be, it is even harder to transition a student into a full life in the community and an integrated workplace if he/she has not been interacting and working with ‘typical’ peers most of the day from ages 3 to 21.”
Inclusion teaches everyone in the classroom to accept students with disabilities and value their contributions, to adapt to challenges and celebrate strengths.
For my son, learning alongside his peers will keep Charlie’s expectations of himself high — and research shows if expectations are high, performances will follow. In addition, learning alongside his peers gives him the opportunity to live alongside his peers, as independently as he is able and chooses.
“At its best, inclusion is about relationships, high expectations, and perseverance,” said Cindi May, a psychology professor at the College of Charleston. These words resonate with me. I’ve watched how each teacher or therapist approaches Charlie, his strengths and his challenges. Success happens when the adult seeks to bond with Charlie, refuses to give in to his delay tactics and manipulations, demands high performance, and sticks it out when Charlie shuts down, whether from stubbornness or lack of confidence. It’s not easy. The most trained educators have moments of exasperation. I’m Charlie’s mother, and I know exasperation well.
But one of the reasons elementary education inclusion is effective is because of the dynamics between children that occur naturally, when given a chance. Truly inclusive schools keep students with and without disabilities on equal footing. Together, they take part in academic classes, extracurricular activities, and even sports teams. They learn to work side by side, helping each other. Their contributions are valued equally.
Make no mistake: Inclusion may benefit both students with disabilities and those students who are developing “typically” — academically and also socially. This benefit is something I already witness at home, with Charlie and his siblings. Emma is 17 months younger and has surpassed Charlie’s development physically and intellectually. She’s watched me work with Charlie, practicing patience and repetition. She has learned when Charlie asks for help, that doesn’t mean she should just give him whatever he wants (even if that might be easier). She knows to help him help himself, whether that’s by offering a hand so he still can climb on a chair himself, or by waiting patiently for Charlie to use a word or sign he knows but is disregarding or forgetting.
I’m determined to teach my children empathy. Emma has already demonstrated compassion and an instinct to help her brother. My dream is that she will grow up accepting other people’s differences and valuing diversity.
“The biggest risk of not including a child with disabilities is that we limit everyone’s potential as human beings,” said Nicole Eredics, an inclusion advocate. “The decision to keep children with disabilities from fully engaging, socializing, learning and teaching the world around them, is a disservice to all.”
Let’s be clear: Inclusion is not about the student with an intellectual disability being able to solve the same algebra problem as the class valedictorian. Successful inclusion incorporates curriculum modifications to allow children to learn side-by-side.
Federal legislation says children with disabilities should have access to a free and appropriate education in the least restrictive environment (LRE). In fact, full inclusion may be impossible or simply not the best approach for every child. It’s up to a student’s Individualized Education Plan (IEP) team to determine the level of supports that child needs to succeed in the LRE.
However, parents too often find themselves defending their child’s right to work for a diploma. Our default should be a general education classroom, not a self-contained classroom. Aim for as much inclusion as possible — not as much containment as possible.
SSo, what does effective inclusion look like?
Several years ago, Cindi May helped Bishop England High School (BEHS), the largest 4-year Catholic high school in South Carolina, become fully inclusive. “With true inclusion, all students face high expectations and academic standards,” she explained. “Everyone is given a chance to reach his or her intellectual potential, and everyone has the opportunity to fail.”
“After all,” she added, “if there is no risk of failure, there is no real sense of accomplishment.”
Dieker cited two themes in an inclusive school: consistency and flexibility. Every class adheres to the same rules and consequences, regardless of the students sitting in it. All students have technology access. All students follow the same homework procedure. However, while some students write their names in the top right corner of the document, others may need to use a stamp. How the child’s signature arrives at the top right corner of a paper isn’t as important as each child being held to the same outcome.
Dieker said she needs only 15 minutes in a school to know if it’s inclusive. Visuals speak volumes. Some classrooms sequester a student with disabilities in the back, huddled with an aide. A truly inclusive classroom is modified so every student is part of the instruction. Other physical signs point to inclusion, such as whether students have recess together and attend assemblies together. Are they integrated, or do “special needs kids” sit off on their own?
Beyond the physical, effectively inclusive schools are dedicated to collaboration and communication, constantly discussing and evaluating each student’s progress and how curriculum can be modified to suit how each child learns. The secret to success seems to be a constant yearning for even more success. Are general education and special education teachers working as teams? Can a general education teacher answer a parent’s questions about a student’s progress, or does that teacher defer to the special education teacher?
Of course, teachers need appropriate training and support to effectively teach a class of diverse learners. Learning the needs and unique abilities of special needs students can take time. “Research shows it takes administrative leadership, a multi-tiered system of support, family and community partnerships, an integrated educational framework, and inclusive policies and practices to effectively meet the needs of ALL students, including students with disabilities and those with the most extensive needs,” said a website called SWIFT, which offers support to promote the learning of all students.
Dieker said the schools “doing it right” have long-term plans — stretching to 13 years out — that focus on ensuring inclusion is “considered, celebrated, and supported in all activities.”
Model schools also have a decentralized sense of inclusion’s importance. “Ownership of the inclusive process belongs to everyone at the school, not just the ‘resource teacher’ or a particular program or individual,” said May. “Students, faculty, staff — all are invested in an intentional effort to create a sense of belonging for every student.”
NNationwide, efforts to improve inclusion exist — but many inclusion experts struggle to name more than a handful. In 2008, 40 percent of students with disabilities in Virginia’s Alexandria City Public Schools (ACPS) were included in a general education classroom. Today, that percentage has risen to 72 percent. The school district’s new goal is to have 80 percent of special needs students included in a general education classroom for 80 percent or more of their day.
To reach its goal, ACPS created “School Expectations Rubric,” which requires its schools to collect data twice a year on varying measures of inclusion success. Dr. Jane Quenneville, who directs ACPS’s special education activities, said that in the first year, it meant measuring instances of celebrating children with disabilities. They made schools note the instances when they included all children in school events and bulletin board displays. They also measured school-wide understanding of special education.
Some private schools are able to go even further than ACPS. Rachel Adams’s 7-year-old son has Down syndrome and a desk at the IDEAL School in Manhattan, hailed by inclusion experts for its dedication to and curriculum supporting inclusion education.
“Our public schools are far too underfunded to do anything other than pay lip service to inclusion of students with more significant disabilities like Down syndrome,” said Adams. “It doesn’t matter if everyone believes in inclusion if there is no money and resources to make it happen.”
Adams particularly appreciates IDEAL’s flexible curriculum (which is built on Universal Design for Learning principles), technology that allows for a multimodal curriculum, small class size, and teachers trained in inclusive pedagogy. Teachers meet weekly to improve their craft.
Indeed, the most successful formula for an inclusive school seems to include a dedication to success, melded with rigorous academic standards and measurable progress.
Of course, such specialized services don’t come cheap. Tuition at IDEAL begins at $36,800 per student this year — or in Adams’ words, “obscenely expensive.”
Angie Bergeson, who heads IDEAL, said its faculty and administration made the “financial and moral commitment to provide the necessary staff and professional training needed” to meet every student’s needs.
“Our schedule is created in such a way that we do not pull students out of academic periods for therapy, but rather provide elective periods where all students, regardless of ability, are offered enrichment or support classes,” said Bergeson. “During these blocks of time, students may go to chess, dance, yoga, Tae Kwon Do, [occupational therapy], speech, or physical therapy.”
IDEAL also provides one-on-one teacher support throughout the day if a student needs it. “This also helps the classroom teachers maintain the appropriate ratio necessary to meet the needs for all the students in the class,” Bergeson said.
But few parents can afford to send their children to a private inclusion mecca like IDEAL. While immersing a child in an inclusive educational environment may be, in fact, ideal, a child’s success does not depend on school alone. “Families must provide the support at home and the consistency so that behavioral and academic plans can succeed,” said May, who helped create the inclusive school in South Carolina.
Visibility is key for parents. Be present, from volunteering at school to attending events and meetings. As Eredics explained — and as my family has learned firsthand — familiarity fosters respect, acceptance, and empathy. Charlie’s pre-K teacher has told us that even the second-graders in his school know his name and greet him with excitement. From the school pickup line, I’ve watched students high-five Charlie as he waits for me to arrive. Witnessing these interactions can make for a blurry, teary-eyed drive home. Most days, I just beam.
TThe truth is, effective inclusion requires that an entire community embrace the philosophy and collaborate. Charlie’s seamless integration among his peers cannot end on the school’s front stoop.
Recently, I brought Charlie and his sister to their first gymnastics class. Every child reacts differently to a new environment. My daughter joined the class with trepidation, listening carefully for instructions and lining up with the other children on cue. Charlie excitedly took in his surroundings, wandering from the line to inspect the equipment, jockeying for position with the instructor, not fully understanding the flow of the class and expectations. While I cringed and wanted to call out to him a few times, I bit my tongue and let the instructor manage the class of six.
When the session ended, the instructor wasted no time in telling me Charlie would not be welcomed back to the general class. She cited his lack of attention and wandering as distractions to the other kids and to her. “If I have to take time to work with him one-on-one, that’s not fair to the other kids,” she told me.
Our strides toward successful inclusion stopped short on the stoop of the gymnasium that day.
While it’s easy to find another gym, it’s not so simple to choose a school for Charlie and then transfer if things go awry. For now, we’ve decided to stay in the public school system and are advocating for full inclusion in a general education classroom for kindergarten in the fall. We will be engaged. We will volunteer. We will be present.
And we will have plenty of inclusion resources on hand, just in case.
