(I asked permission to write this portion of my son FuXia’s story. We talked yet again about how discrimination affects children adopted internationally. I asked Fu if he was comfortable with people reading about him or if he wanted to keep his story private. His courage, as always, took my breath. “If it will help other children, you should tell my story.”)

Tonight, my husband helped our son FuXia with homework. When an hour’s work yielded no answers for five easy questions, they called it an evening.

Our earliest photo of Fu

We met FuXia at a medical home in 2008 while adopting our younger son YoYo. Fu stole the show — especially when he spoke English. He explained a self-portrait he painted, flung himself from his wheelchair to roll across the floor, and pulled himself upstairs on his elbows, chattering all the while. Once we mastered YoYo’s care routine, it was time to rejoin our travel group. We measured goodbyes, careful against wounding FuXia’s spirit.

“I love you…you do not come for me.” FuXia’s murmur cut our hearts. We returned for him in 2010. Fu spoke English and Mandarin but had little schooling. Like many children displaced from birth families in other countries, he appeared older than his birth certificate age of nine, making true age impossible to verify.

On returning to the States, I took FuXia to our elementary school. Within minutes of our arrival, the principal steered us toward intermediate school, refusing Fu admission because he looked “too old.” I protested that this would be too hard— Fu barely had three years of school in China. How would we possibly accommodate his learning needs and his physical challenges?

“You’re the one who signed up for this,” he replied.

To be fair, I signed up to mother this boy with a joint disorder, a wheelchair, and a history of question marks. I signed up for challenge as much as anyone who breathes. I did not sign up for discrimination.

Fu was placed in sixth grade. He took an English as a Second Language test and saw the ESL teacher occasionally, but his Mandarin proficiency was never measured. He soon stopped speaking it, leaving us unable to gauge his competence relative to other nine-year-old Mandarin speakers. Fu’s learning level ranked below second grade, so he was given remedial reading and math. He had different assignments than other sixth graders and a scribe, an aide who took notes for him in class. Fu made great gains that year despite forty medical absences. He wasn’t tested for learning disability. He just needed time to acclimate to America, I was told. That spring, Fu was given an Individualized Education Program, a blueprint to make education accessible.

Fu’s first walk into school

The joint disorder was difficult. We traveled from Nashville to Philadelphia Shriners Hospital for treatment, sometimes driving round trip every other week. Fu repeated sixth grade, surprising everyone when he walked into school the first time using a walker. He sang out “This is Why We Fight” with the Decemberists cranked loud during painful therapy and played rummy as the orthopedist twisted his feet into casts. One year after leaving his wheelchair, Fu began using crutches.

In seventh grade, the wheels came off Fu’s education. I was given no say when he was removed from remedial classes. Overwhelmed by material years above his reading level, Fu regressed. Teachers called us incredible for adopting a kid “like that.” His new principal exuded sympathy when I voiced frustration. Her young relative’s autism had similarly devastated family expectations. “Some things are as good as they’re going to get,” she counseled. A few weeks later I withdrew FuXia — he’d been locked outside during a fire drill after he couldn’t walk quickly enough to keep up. It seemed nobody would keep Fu safe, much less teach him.

I homeschooled Fu eighteen months before admitting his issues exceeded my experience. Despite ten years teaching school and tutoring Language Arts, I was confounded. Fu wasn’t progressing beyond third grade reading. We were once again at the mercy of the public school to obtain appropriate education, having exhausted our finances for Fu’s physical therapy.

Fu returned to public school as an eighth grader on his fourth anniversary in America. His team reviewed the IEP and began evaluations. I gave them research from psychologists and language specialists about the unique learning needs of international adoptees. Fu entered RTI, Tennessee’s new framework for identifying learning disabilities, after tests placed his reading at the third percentile. Now we’d get somewhere.

But we didn’t.

Evaluations dragged out for months. I was told I was stressing teachers. Fu had a teacher who scribed notes, carried materials, and managed heavy books, because his disorder severely limits hand function. He had extra time for transfers, since he walks slowly. Couldn’t I see how hard Fu’s teachers were working to accommodate his challenges? If they were also reading tests aloud, giving him easier assignments, and reducing his homework, why was I unsatisfied? He was getting lots of help!

I was unsatisfied because a public school’s delivery of education can’t be modified without an identified disability to justify it. A child has the right to learn in the Least Restrictive Environment — with the same content, assignments, and grading rubric — as his peers, unless there’s a darn good evidence-based reason for specialized instruction. Instead of identifying a learning disability, the school was pushing FuXia forward without addressing the root of his deficits: he can’t read!

Fu & Yo

I pored over my new bible, the Individuals with Disabilities Education Act, until I found gold — Senate Report 108–185, from the Health, Education, Labor, & Pensions Committee. SR 108–185 was drafted to update IDEA and align it with everyone’s favorite scapegoat, No Child Left Behind. IDEA 2004 is a human rights milestone, affirming the right of children with disabilities to free appropriate public education. Combined with IDEA, NCLB offers one tremendous gift. IDEA ensures children’s right to learn reading, and NCLB legally defines reading to avoid confusion.

You’d be surprised confusion exists. For example, even with RTI, the most intensive support outside special education, Fu’s reading remained in the third percentile. His IEP team said it’s because he’s an ESL student. Then they said it was due to cultural differences and limited English proficiency. Then they said it was because of his medical absences four years ago. They insisted his reading was within normal parameters, refusing to consider any of the reading curricula recommended for international adoptees. They described his progress as “aggressive,” even when his scores fell. Strangely, the language pathologist offered to evaluate him in Cantonese, a language he had never learned because it’s spoken in a completely different region of China. “I get that he spoke Mandarin or whatever,” she quipped.

IDEA seeks to limit over-identification of minorities as learning disabled by imposing exclusions so children aren’t classified as disabled if learning issues stem from cultural differences, limited English proficiency, or lack of instruction. Basically, cultural tradition, ethnic dialect, or lack of privilege do not connote learning disability.

Ironically, HELP found those exclusionary factors discriminate against international adoptees, whose learning deficits are typically shaped by institutional deprivation. SR 108–185 cautions States about this, noting adoptees quickly lose birth language post-adoption and aren’t benefited by typical ESL/ELL programs. The Report insists students shouldn’t be tested in languages they no longer use. It even explains how evaluation timelines protect international adoptees from long waits before being screened for learning disabilities.

Senate Report 108–185 was everything FuXia needed, five years too late.

The IEP team rejected SR 108–185. “I don’t know what you think you have there,” sneered one member. The next words galvanized my resolve. “Anna, he’s Chinese. Look at him. He looks Chinese. Listen to him. He sounds Chinese. He doesn’t have a learning disability!”

Deep breath. Can I ever help my children survive not being white? I signed up for this, but Fu didn’t. He didn’t sign up for disability, losing birth family and heritage, or institutionalization.

My son didn’t sign up for discrimination.

The nine point drop Fu’s IQ took last year — half of his eighteen point decline from 2011 to 2015 — indicates public school has damaged my child more than no education at all. How on earth does a kid’s IQ drop from exactly average to the ninth percentile in four years?

Note to our district: please do not call me ungrateful for insisting Fu’s right to read is as important as his right to physical accessibility. Do not take screenshots again of my Facebook posts about SR 108–185 and send them to colleagues to intimidate sympathetic parents who comment. Do not ignore my requests to inspect my child’s educational records.

Please. For God’s sake, just teach my kid to read.

Fu, building his desk

Fu’s bedroom is full of circuit boards and scale drawings. He has a knack for LEGO robots, and he believes 3D printing could help him develop an exoskeletal device to improve hand function. He loves Doctor Who, NASA, and poker. His favorite quote is Churchill’s cry, “We will never give up! We will never surrender!”

As long as I work to secure my son’s education, I’ll raise a ruckus about SR 108–185 for every internationally adopted child who struggles to learn. I began that ruckus with letters to several HELP Committee members in July. Then I visited Washington during our annual summer drive to Philadelphia Shriners Hospital. One staffer in particular encouraged my notion that HELP’s recommendations for international adoptees should be included in IDEA regulations. The HELP Committee has already done the work of explaining the right of internationally adopted children to learn. Who will help children exercise that right?

Folks in DC challenged me to start a conversation about education for international adoptees. I must find stories from other parents in this struggle and people willing to write their elected officials if I want the forward-thinking work in SR 108–185 to protect children like FuXia from discrimination in public school. I need help to back my claim that protecting the rights of even a few children is worthy of the big IDEA.

Meanwhile, I have to help my child learn to read.