Next month, my son Jonah and 300 of his classmates will proudly march up the steps to a stage set up in Trenton’s Sun Bank Arena, in central New Jersey. There will be valedictory speeches and class gifts, beach balls and air horns, sentimental tears and unrestrained glee. In other words, this will be a typical high school graduation. But Jonah won’t receive a diploma or head off, like almost all of his peers, to college, a career or the military. His future is uncertain; his chances for complete independence are grim. Nonetheless, his family, friends, and teachers will erupt with cheers when he, in cap and gown, will likely dance across that stage and high-five anyone within range. Let me explain. Jonah has multiple disabilities stemming from a genetic mutation called Fragile X syndrome, the most common inherited cause of intellectual disabilities. Fragile X syndrome affects one in 4,000 males, who are typically more impaired because they have only one X chromosome, and one in 6,000 females. One in 259 females, like me, is a Fragile X carrier. Our other three children lucked out in this genetic roll of the dice and we never knew their good fortune until Jonah received his diagnosis. Jonah was lucky, too, because this hiccup in the tail end of the X chromosome can result in profound disabilities. He’s relatively high functioning, although still afflicted with ADHD, sensory integration disorder, developmental delays, social anxiety and autistic-like behavior.
Making a ChoiceWe’re grateful for Jonah’s successes—actually, most of the time we’re just grateful for Jonah—and as graduation rolls around, we’re especially aware of how much school choice has enhanced Jonah’s academic and social growth. There’s a double irony here: one general and one personal. First, we’re beneficiaries of school choice because a genetic glitch—bad luck, as it were—rendered our child incapable of learning like typical children and his disabilities qualify him for special education services guaranteed by law and paid for by local, state and federal funding. Second, I write regularly about the urgency of school choice for families who lack the financial means to avail themselves of its most common form in New Jersey, moving to a better district. Yet my family is entitled to exercise a different form of school choice, unimpeded by the politics that stymie choice for non-disabled children. Making choices for Jonah started back when he was 3 years old and automatically placed in a countywide preschool for handicapped children. His teacher there told us he’d never talk. With the support of the case manager assigned by our local school district, we found a privately run school for children with communication disorders and comorbid conditions. By age 4, Jonah was talking. By age 5, he was identifying letters, numbers and sight words. By age 7, he was reading and doing rudimentary math. Without that right to school choice, Jonah might have been relegated to a system that placed an unwarranted ceiling on his potential or, to use a loaded phrase, stifled his growth through the “soft bigotry of low expectations.” When Jonah turned 13, we worked with our Child Study Team—teachers, therapists, case manager, us—to make a different choice because we decided that he would benefit from a less restrictive environment. After considering many options, we chose a self-contained class in our local middle school, once we negotiated a series of modifications, conditions and opportunities for inclusion.
The Right ChoiceI don’t want to sugarcoat this: the past six years were rewarding, but tough. We spent many hours meeting with school personnel (and, once, a lawyer), writing letters, challenging district procedures, monitoring adherence to his Individualized Education Plan. Nothing was perfect. Everyone made concessions. But it was the right choice for Jonah. Now, at age 19, our young man spends half his day in our local high school, primarily in reading and financial literacy classes, and the other half of the day in a job-training program run by a nonprofit organization. He’ll do this, or some variation of this, for another two years, at district expense, until he ages out of New Jersey’s special education program and receives his diploma. Jonah’s ramp to that stage at the Sun Bank Arena has been paved by wonderful teachers, creative case managers, and data-junkie parents. And, most important, the freedom embodied in school choice. Our son’s story isn’t typical, but there’s a lesson here about the potential academic and social gains realized when children, disabled or not, have choices about where they go to school.
Laura Waters writes about New Jersey education politics and policy for WHYY’s Newsworks and NJ Spotlight, as well as on her own blog NJ Left Behind. She is a mother of four and has been a school board member in Lawrence Township, New Jersey, for 10 years.
Laura Waters is the founder and managing editor of New Jersey Education Report, formerly a senior writer/editor with brightbeam. Laura writes about New Jersey and New York education policy and politics. As the daughter of New York City educators and parent of a son with special needs, she writes frequently about the need to listen to families and ensure access to good public school options for ...