My son slides under the daybed, flattening his sprawling limbs in all directions across the dusty floor, then retracting them with a jerk. “I’m making myself invisible!” he declares. He knows our news is unwelcome.
Don’t let him think it’s because of him, his doctor had coached.
Crouching, I reach my hand to stroke his arm — a gesture I realize is not enough to comfort a boy whose body short circuits with uncertainty. My husband and I tell him:
You can’t start second grade tomorrow.
We’re leaving Singapore. We’re moving to America.
We don’t know when. It will be soon.
We don’t know where. We’ll figure it out.
We don’t have jobs. We’ll get them.
But until then, you can’t go to school.
What we don’t tell him is that the school he’s attended since prekindergarten, the one he visited just two days ago to meet his new teacher and see his classroom, no longer will accommodate him in any meaningful way now that he’s been diagnosed with special needs. And so we are moving halfway around the world to a country where he will be guaranteed an education.
President Trump’s education secretary nominee, Betsy DeVos, doesn’t seem to have much appreciation for that guarantee.
In her Senate confirmation hearing, she responded to a question about compliance with the federal Individuals with Disabilities Education Act (IDEA) by saying, “I think that is a matter that’s best left to the states.” Sen. Tim Kaine (D-Va.) pressed her: “So some states might be good to kids with disabilities and other states might not be so good, and then what? People can just move around the country if they don’t like how their kids are being treated?” DeVos repeated: “I think that’s an issue that’s best left to the states.”
In a follow-up letter, she wrote — after no doubt doing some homework — that she is “committed to enforcing all federal laws and protecting the hard-won rights to students with disabilities.” And yet she went on to praise a voucher program that incidentally requires families to give up special education due-process rights they are given under the IDEA law.
As we learned while living as American expats in Asia, when decisions about special education are unregulated or left to “choice,” students and their families can end up with few viable options.
My son was diagnosed with attention deficit hyperactivity disorder (ADHD) and autism spectrum disorder in July, during a trip to the United States that included ice cream with cousins, hiking a mountain and four days of neuropsychological testing. In the parlance of American educators and psychologists, he is “twice exceptional” — intellectually gifted but impaired by developmental, social and behavioral disabilities. The diagnosis was no surprise; we knew this long before professionals provided a label for his idiosyncratic behaviors. His toddler vocabulary included words like “momentum.” At 7, he concluded that time travel is possible by extrapolating the speed of light. He “takes pictures” with his mind and solves math problems by “seeing numbers.” And yet the commotion and noise of public places can destabilize him. His brain, body and nervous system are in perpetual overdrive, flooding his system with the stress of “fight or flight” impulses.
The neuropsychologist asked us how soon we could move back to the States.
But we hadn’t planned to move back, at least not yet. My husband and I had lived abroad for more than a decade, building a shared history as we moved from Afghanistan to Vietnam to Singapore. Our son and daughter had spent more time exploring countries across Southeast Asia than the country of their citizenship. They celebrated Eid, Chinese New Year and Diwali with family friends they called “auntie” and “uncle,” who treated them to egg tarts and dumplings. Our global lifestyle reflected values my husband and I held deeply — about tolerance, cross-cultural understanding and our place in the world.
Besides, our son’s school was well aware of his wildly asymmetrical strengths and weaknesses, and, after countless meetings, we had worked out a plan for grade 2. Yes, his outbursts had challenged his most compassionate teachers. I dreaded waving goodbye at the bus, not knowing if I would receive a call from school later that day. But the school’s administrator had promised: I am here to assure you that, in no uncertain terms, your son will go to second grade.
The diagnosis changed the certainty of terms.
On orientation day, as I watched my son build a tower of Legos on the classroom carpet, the learning support coordinator pulled me aside to inform me of a new “evolving plan.” My son’s start date was postponed, he could attend school for only two hours a day and that attendance was subject to doctor approval. We proceeded on a tour of the school, reacquainting my son with the cafeteria, the library. The learning support coordinator leaned in again: Oh, by the way, if there are any “behavioral incidents,” they’d plan to evacuate his class.
Much like the United States until the mid-1970s, in Singapore, formal schooling of children with special needs is currently optional, unprotected by law. All local children must attend school starting at age 6, but children with “moderate to severe special needs” (e.g. autism, hearing and visual impairments, and multiple disabilities) are exempt. Thus, policies on inclusion of children with special needs — whether to admit them, how to integrate them, and what services to provide and at what cost — are at the discretion of each school. It is their choice. (In November, Singapore amended its compulsory education law, so that special needs children, too, will be required to attend mainstream or specialized schools starting in 2019. But expatriates and private international schools like ours fall outside the law’s jurisdiction.)
In the 1974 report “Children Out of School in America,” the Children’s Defense Fund found that schools rejected children with special needs “on the grounds that these children are different, might hurt others, would not benefit from regular school, and would tax the already stretched resources and patience of teachers and administrators.” That left parents with limited choices: expensive professional care, state-run institutions or home schooling.
In Singapore, inclusion is theoretically possible for children with “mild disabilities;” local schools are staffed with some specialists, the government supports assessments, and the special needs ecosystem has begun to grow. But in the face of rigorous academic standards that rank Singapore as a global leader in public education, families of special needs children frequently opt out. They send their children to specialized schools or they home-school.
For us, since a two-hour school day was untenable, we had no choice but to withdraw our son. While our Facebook feeds filled with first-day-of-school photos, we frantically scheduled appointments with alternative programs. But most served young children with acute learning needs: nonverbal, lower IQs and less developed life skills. When learning could be tailored to our son’s level, we were priced out: A program individualizing U.S.-curriculum quoted the equivalent of $3,500 per month. My husband and I agreed: We needed to move home.
And so, in a span of months, our family’s future was catapulted 12 time zones away.
Last month, our son started at a public school in Newton, Mass., one of the first towns to integrate full-inclusion for children with special needs. His individual education plan, hand-delivered to our house by his school’s inclusion facilitator, is a binding legal contract. The full suite of services he receives — occupational therapy, full-time aide, social behavior groups and counseling — would cost us at least $5,000 a month in Singapore. For more than a decade, we paid U.S. taxes without living on U.S. soil. Now we are forever grateful for public services.
Culture shock is part of our new life. But we also feel more American. We fundamentally believe in the values that this country stands for, in a way that we didn’t fully appreciate before.
It’s not surprising that marginalizing students with special needs impacts how people who are different are integrated into broader society. In Singapore, I rarely encountered children with visible special needs. Instinctively, I scanned restaurants, shopping malls and crowds for children in wheelchairs or covering their ears to block out the cacophonous sounds of the city. It wasn’t until we lived around the corner from a religious school for children with autism that I saw them regularly: a stream of meandering children in cobalt-hued uniforms passed my house at 3 p.m. each day, hands held by nannies who escorted them home, where they once again disappeared from public view.
In many ways, we shielded our son, too. To minimize meltdowns, we avoided restaurants, limited after-school activities and timed park visits when there wouldn’t be many people there. We whispered euphemisms to a few friends about our son’s “Asperger-like” traits, struggling to talk openly about how the world could overwhelm him — and us.
Our son does not know the real reason we moved. I hope, that with time — when making a first friend is a distant memory and American milk no longer tastes to him like broccoli — we can tell him. We moved to America so he could thrive in a community of peers, who embrace and accept him as much for his struggles as his creative moments of brilliance. We moved because he, like any child, deserves a right to education. We moved so he never again feels invisible. We moved to America so he no longer needs to hide.