My daughter’s life, like many children’s, was full in early March, before everything was put on hold. She was invited to a birthday party at the local gymnastics center. She was preparing for her upcoming dance recital. At school, she loved her teacher and her classmates, and at recess, she was learning how to cross the monkey bars, with her best friend’s help.
All families experienced the cancellation of regular childhood events in the spring, yet for my daughter, this retraction of social life seemed particularly threatening. My 8-year-old has Down syndrome, and as part of an inclusive education plan, she has been in a regular classroom setting since kindergarten. The rewards of her inclusion have been extraordinary, including true friendships and valued contributions to her school community. But as remote learning and our relative isolation go on, I fear that the gap between my child and her peers is expanding and threatening our long-term goals for her development.
Before my daughter taught me otherwise, I assumed that the life of someone with Down syndrome was sheltered and lonely. When I was her age, kids with intellectual disabilities were hidden away in separate classrooms. I never saw them or learned how to be their friend. But I remember staring at them when they entered the gym during school assemblies. My daughter’s inclusive school experience has mostly eclipsed those memories in my mind.
My daughter has had success in school because of her individualized education plan (IEP), a legal document that guarantees each child with a disability a free and appropriate public education in the least restrictive environment. IEPs ensure different kinds of support depending on a student’s needs, and for my daughter, it means that she has an in-class aide who helps her stay focused and guides her through instructions and assignments. Because she needs more time to complete her work, some of her assignments are shorter than her peers’. The IEP specifies that tools are available to help her visualize math problems and complete reading assignments. In all, the IEP allows my daughter to do her best work and keep up with the quick pace of a third-grade classroom.
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My husband and I have an annual meeting with her school to discuss her IEP and make any necessary adjustments. When we met in the spring, we assumed that the school day would be back to normal by the fall, which, of course, is not the case. Although my third grader attends daily Zoom meetings with a teacher who addresses her specific learning goals, other parts of the IEP have been more difficult to fulfill. Classroom aides, for example, are furloughed in our school district. With flexible jobs, my husband and I are able to shift our work schedules to help her with remote schooling, a privilege not all parents have. We do our best to keep her on task and remind her to pay attention to her Zoom meetings, but we are struggling to figure out how to provide the support and environment she needs to show what she knows.
If online education serves anyone at all, it’s kids who are good at multiple-choice questions and standardized tests. The order of tasks that might be intuitive for other children—reading instructions, considering the problem, then thinking through possible answers—is not for my daughter. Whether she understands the concept being tested or not, she gets lost in the satisfaction of random clicking. She is also having a hard time with the independence that online learning demands. Last week my daughter took a math test online. We worked on math all summer, yet she was getting most answers on the test wrong: Watching her type 2 plus 5 equals 5 without intervening was excruciating.
The Zoom meetings are particularly frustrating. The background noise of unmuted meeting participants makes it difficult for my daughter to concentrate. She also can’t contribute to discussions fast enough. Her teacher makes an effort to engage students in conversation, because every child on the call wants to be heard. But before my daughter is able to get her teacher’s attention, the relevant conversation has often passed her by. When she is called on, my child, like many kids with Down syndrome, must work through some significant speech challenges to be understood. She recently shared with her class, “I have Down syndrome!” “You have what?” her teacher asked. “Down syndrome!” Not understanding what she was saying, her teacher offered a generic “Okay! Great!” and moved on. My daughter, thrilled to have shared something about herself, moved on too, yet the opportunity for my daughter’s peers to know the term Down syndrome, to discuss how people with disabilities are a unique and respected part of their community, was lost.
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An inclusive education doesn’t just give my daughter important social interactions with others; it also gives students meaningful time with her. When people with disabilities are tucked away in separate classrooms, or later in group homes and care facilities, society can easily ignore their value as citizens, neighbors, and friends. Some of the most inhumane responses to the pandemic have shown what can happen when people lose their connection to those with disabilities. In the spring, disaster plans for a number of states said that people with intellectual disabilities were a lower priority for lifesaving equipment, should that equipment become scarce.
I recently ran into a friend of mine whose child is in my daughter’s class, which now means that they attend the same Zoom meetings. We chatted about the challenges of parenting in this particular moment, and he joked about how in 10 years we are bound to see a sudden drop in college-admission scores among 18-year-olds, thanks to the disruption in education that this global pandemic has caused. I laughed, but his comment was a reminder that the future I need to imagine for my child is a radical departure from the one he envisions for his kids. When I think of my daughter falling behind, test scores and other routine measures of success matter much less to me than the lost experiences of learning together. Then again, I think that’s probably true for students everywhere right now.
Every IEP includes a space for parents to share their long-term goals for their child. It is a strangely personal part of a legal document that is otherwise shaped by the language of standardized assessment and measurable outcomes. On my daughter’s IEP, I stated that I wanted her to be as independent as possible, to find a fulfilling job, and to be an active and valued member of her community. This is still true, but the pandemic has taught me to also cherish her dependence—on me, her father, her teachers, her friends. By prioritizing human connection over achievement, I acknowledge who she is and help her navigate through the world in her own way. However, she can’t build those relationships until she can return to the classroom. Until then, the divide between her and her classmates will continue to grow.
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