WASHINGTON -- Greg Masucci just wants to hear his little boy say his own name.
That's what he tells developmental specialists as he sits in an office at John Tyler Elementary School for what feels like the hundredth meeting to hash out his son's educational goals. This time, the specialists insist the school can't be expected to teach 6-year-old Maximus to say his name and his family's name upon request.
"He should be able to say his name, our name … and maybe 'Washington, D.C.,'" Greg says. "You know, just, God forbid, if he gets kidnapped."
Max has severe autism. He can't talk, sit still or express his desires. Sometimes he smears his own feces on bathroom walls and dives head first onto his bed. No one understands why.
Greg's nightmare scenario of losing Max isn't hypothetical. Schools have lost him in the past. Once, he escaped through a broken gate and into a field adjacent to a feeder street to the highway. When his father found him, Max was just feet away from oncoming traffic, walking toward a soccer goal at the field's end. Although his story ended happily, it doesn't always for others. Avonte Oquendo, a 14-year-old New York City boy with autism, is still missing more than four weeks after walking out the front doors of his public school.
Max's parents believe there is hope that their giggly, sweet child can grow up to be somewhat independent if he receives the right education. And at age 6, they believe that his window for learning how to learn is closing.
Max is one of several hundred thousand American children who have been diagnosed with autism in the last decade. Diagnosis rates have skyrocketed from one in 155 in 2002, to one in 88 in 2008. And as these boys and girls grow up, our budget-strapped country will face yet another blow: According to the Autism Society, if these children aren't taught early and effectively the skills that could eventually allow them to live on their own, they'll cost taxpayers about $3.2 million each throughout their lifetimes for services such as nurses to help them go to the bathroom and group homes where they can live after their parents can no longer care for them. In 10 years, those children will grow up and cost taxpayers anywhere between $200 billion and $400 billion annually. But with proper care and schooling, according to research and physicians, there's a roughly 60 percent chance they'll be able to support themselves.
Of course, autism spectrum disorders are complicated. Researchers have yet to identify the causes of the condition, and every child develops differently. But many physicians, such as researcher Dr. Laurie Stephens of the California-based Education Spectrum and Dr. Kathleen Atmore, Max's doctor at Children's National Medical Center, describe a "window of opportunity."
"The window of opportunity is that the brain is still developing and very malleable until age eight or nine," Stephens said. "If, at that point, you utilize some of the evidence-based best practices like behavioral intervention strategy, you really are rewiring the brain."
Different researchers have different ideas about how this works. Peter Mundy, the director of educational research at University of California, Davis' MIND Institute, says there might be a second window later on. But Mundy and Stephens agree that study after study has shown that early intervention -- targeting children during this critical period for brain development -- is key. A 2005 Research in Developmental Disabilities study found that children who received specific autism school programming called "intensive behavior analytic intervention" in small teacher-student ratios yielded "statistically significant" gains in all areas except for motor skills when compared with their peers. Studies like those have made Greg and his wife, Maya Wechsler, hopeful that if Max catches the right instruction at the critical moment, he might learn to ask questions. To read. To become an independent member of society.
Experts have seen children become self-sufficient after starting off more despondent than Max. That's what enrages Greg during the school meetings, an extreme version of the kind experienced by nearly every parent: That schools are wasting his son's precious time and, more significantly, the plasticity of his young brain.
Max plays on the trampoline with his father, Greg.
After cycling Max through four public schools in his short life, Greg and Maya have come to the conclusion that the District of Columbia Public Schools system doesn't have the capacity to educate their son. Federal law states that public school systems must foot the bill for private schooling for students like Max if the public schools can't give him a "free and appropriate public education."
How you define "appropriate," though, is where it gets blurry.
Last November, Max's family filed for private school funding. In January, a DCPS hearing officer denied their claim on the grounds that Max's lack of progress is not legal reason enough to grant him free tuition.
Washington, D.C., like other school districts throughout the country, is currently trying to reduce the number of special education students on the rolls of costly private schools. D.C. Mayor Vincent Gray has called for reducing his city's private placements by half. A document obtained by The Huffington Post shows that the district is offering incentives to public and charter school administrators who keep special education students under their roofs. But in a positive sign for special education students in D.C., the most recent results on the National Assessment of Educational Progress found that students with disabilities increased their scores by nine points in fourth grade reading and eighth grade reading and math, and by three points in fourth grade reading.
The district declined to discuss Max's case, citing privacy and pending litigation. It asserts the switch from private to public schools assuages a civil rights concern, because students with disabilities can stay in regular public schools where they can be included and not segregated. "Federal law requires that local education agencies evaluate every child at least once a year to determine whether or not they are in the least restrictive environment possible," Dr. Nathaniel Beers, a pediatrician who oversees special education for DCPS, told HuffPost. "Is there a kid in a self-contained classroom who doesn't need to be? Is this a kid who is in a more restrictive setting, like one of our self-contained school buildings?"
But many special needs advocates suspect it's an attempt to save money. For years, a court injunction compelled D.C. to place more special education students with even low or moderate disabilities in private placement. Consequently, private school tuition ate significantly into the city's school budget.
All of which scratches only the surface of the complicated questions being asked by school districts across the country: How do we educate our most vulnerable citizens, children who have disabilities ranging from dyslexia to autism? Is it better to make sure their individual needs are met, or is it better to surround them with their "neurotypical" peers? When making budgeting decisions in the face of dwindling resources, do your last dollars go to general education students or to the neediest cases?
Within the world of autism interventions, these questions only get tougher. As a civil right for students with disabilities, inclusion would have such children taught in a regular classroom among their peers. But what if the teacher isn't trained to cater to a student's specific diagnosis?
The questions demand answers. In an effort to find them, HuffPost reviewed the inner workings, documentation and correspondence between Greg and Maya and their schools -- hundreds of pages that trace their struggle for their son's future, and the future of those like them.
To those children like Max, these abstract questions mean nothing. While policies change, mistakes happen, and a school district tries to emerge from decades of expensive litigation and retrofit its classrooms for students with special needs, he waits. His parents think Max may be losing his best chance to develop the skills to lead an independent life. And he could not even say his own name.
THE ROAD TO DIAGNOSIS
Most moms have big dreams for their kids. Maya Wechsler has them, too, only hers are a little different.
Maya dreams of the day when her Max can sit through a cartoon. Maybe one day, Max could talk, instead of uttering a limited range of sounds like "swee" (swing) and "Maaaah" (Max). Maybe he'll be able to show people what he wants, instead of running around a room, shrieking, his desires anyone's guess.
When Maya really lets her imagination run wild, she pictures Max as an independent adult. Employed as a grocery bagger. Or a mail sorter. "The best scenario is that he learns how to learn," Maya says.
She struggles to reconcile her love for her son with her dismay for his situation. "I love my son so much," she says. But, she adds, "I didn't sign up to be a parent of a child who will remain a child until I die."
On a sunny Thursday in February, Max's parents sat on their couch in D.C.'s Capitol Hill neighborhood to tell Max's story. Their living room is a flurry of toys -- dolls, a mini-stroller and equipment one might expect to see at the Cirque du Soleil. Hanging down from the ceiling is a spinning red-and-white fabric enclosure that looks like a cocoon; a monkey bar with two yellow rings to hold; and a long piece of purple fabric, a swing. Max, a balletic child, is calmed by spinning, swinging and jumping, so these things are everywhere: a swing in the parents' bedroom, a small trampoline in Max's room. Every small movement in the house is picked up by an extensive intercom system. "If it's too quiet," Greg says, "we worry."
Greg, a 51-year-old realtor, and Maya, a 35-year-old photographer, met in Denver in the fall of 2004 and married about two years later. She gave birth to Max, their first child, in November 2007, under normal circumstances. Max was late to a few milestones, like walking. So at 18 months, he was examined by a doctor from Early Stages, D.C. Public Schools' diagnostic center. After that, the city sent third-party contractors -- speech, physical and occupational therapists -- to visit Greg and Maya's yellow townhouse to work with Max on his speech. They brought toys and forms to fill out. As Maya recalls, they came, sat on the living room floor, stayed for an hour and left.
By the time Max turned 2, his speech delay became more worrisome. Max attended a daycare operated by a Spanish-speaking woman, so his parents assumed that was the cause. More evaluators checked him out, but none offered a diagnosis.
Max would walk around the house carrying random objects like plastic knives, hammers or drumsticks. "We thought he was just a quirky kid," Maya recalls. And besides, a speech delay had an unexpected benefit: D.C. would provide him with free preschool earlier.
At 2 years old, Maya and Greg took Max to Walker-Jones Elementary School to be formally evaluated. Six professionals worked with Max, who started climbing bookshelves and screaming and crying. Then a therapist started hitting Max on the back rhythmically. She squeezed him from behind and picked him up, then dropped him to the floor so that his feet hit the ground hard. He calmed down. "I was just blown away that someone knew what to do to make my child shut down," Maya says, "in a good way."
For the next few months, Maya and Greg waited, checking the mail for the letter from the district that would explain Max's speech problems. Instead, on Oct. 28, 2010, they got an email. Maya burst into tears. Greg did not believe the diagnosis. Max had severe autism and ADHD. "It's like being told you have AIDS in an email," he says.
For a few weeks, they mourned the death of the son they thought they would have.
What makes the episode so tough to comprehend was that, compared with his present state, Max was talking then.
In video footage compiled by Greg to argue that while with DCPS, Max "has regressed to the point where he can barely speak," Max was developing language skills when he was younger. In a scene shot in 2010, Max is in pajamas next to his little sister, Delilah, then an infant. From off-camera, Maya says, "Say, 'I love you, baby.'" After a few tries Max says, "Ayaya beebee." A later clip shows him speaking more clearly, yelling, "Mommy's shoes!" while dancing in them. But a few years later, he could not repeat any of those phrases. When asked to name a hammer, he jumped up and down and put the hammer in his mouth.
In some cases of autism, regression can be normal, researchers say. But as Mundy put it, it's hard to know whether the cause is biological or because new behaviors are demanded as part of an intervention.
In another scene, Delilah is rocking back and forth in her bassinet. Max says, "Deyayah, Deyayah." When prompted, he runs over to kiss her. Then he says, "I hug the beebee," and puts his arms around her. Now, when Delilah, age 3, tries to engage Max, she gets nothing. Max can also be seen saying things like, "I miss you, Mommy." But he can't say that anymore.
Maya says she can't watch the video without crying. The memory haunts her.
The last time Max showed sustained interest in something, Maya says, was that Christmas in 2010. The family was home, and Maya sat with her laptop looking for activities. Max grabbed his toy laptop, sauntered over and sat next to her. "Mommy's 'puter! Mommy's 'puter!" he yelled.
"Then," she says, "it went into freefall."
Max's mother, Maya, spins her son on one of their indoor swings.
GETTING SCHOOLED IN SPECIAL ED
Once upon a time, students like Max had no schools to attend. In 1970, only 1 in 5 children with disabilities attended any school.
But after the race riots of 1968, the winds of the civil rights movement swept up parents who believed their children deserved more. These parents were part of a burgeoning movement, a patchwork of active families. In the early 1970s, two major lawsuits in Pennsylvania and Washington, D.C., shone a light on schools' exclusionary practices. In 1971, four mothers in Washington state wrote the nation's first law to guarantee equal rights for children with disabilities. This law became the model for the 1975 federal Education For All Handicapped Children Act. The law relied on the nondiscrimination clause of the 14th Amendment to require that states guarantee all students with disabilities "a free appropriate public education" through the implementation of an individualized education plan, or IEP -- the document distributed to special education parents across the country to track and map their goals for their children.
Some still saw room for improvement. In 1989, Sen. Tom Harkin (D-Iowa), whose own brother was deaf, introduced several updates to EHA, transforming the law into what would become known as the Individuals With Disabilities Education Act (IDEA). Harkin's updates prescribed that students with disabilities be educated in the "least restrictive environment" possible. Overall, the federal government is supposed to provide 40 percent of total IDEA costs, but in 2012, the measure was underfunded by about $17 billion. President Barack Obama's 2014 budget, released in April, does not include an increase to IDEA, but Harkin has said he plans to reintroduce legislation that would fully fund the law through a tobacco tax.
Under IDEA, a school district is responsible for meeting a student's IEP goals. If the school district in which the student is enrolled cannot provide an educational program that delivers "free and appropriate public education," they are required to find a program elsewhere -- whether in another public school district or in nearby private schools -- and pay for the student to participate.
While IDEA expanded schooling for a few hundred thousand students, it also set up a system that, by its nature, can quickly become litigious and contentious for parents and school districts. "Conflict is inherent in this scenario," said Candace Cortiella, a disabilities rights advocate at the D.C.-area Advocacy Institute, which aims to help people with disabilities.
Parents might believe their child needs certain services to accomplish his or her IEP, but special needs advocates say school districts often push for less. Under IDEA, districts are not allowed to make decisions based on costs, but the law allows them to take cost into consideration when assessing different "configurations" of the same services. With IDEA so severely underfunded, this process has long strained parents' relationships with school districts. And over the past few years, as schools have had to cut their budgets during the recession, some say the situation has worsened. With the fate of sequestration cuts still uncertain, IDEA is losing $600 million this year, paving the way for greater tension in future negotiations.
It is these factors that lead parents like Maya to conclude that "the deck is stacked against us."
For decades, Washington, D.C., was particularly negligent. In 1995, parents of students with disabilities filed two class-action lawsuits against DCPS, claiming that the district endangered their children's right to schooling under IDEA by not paying their private school tuition on time. The resulting federal court injunction, the Petties decision, required that D.C. implement hearing decisions in a "timely manner," and gave a federal court supervision over D.C.'s special education transportation program. (A judge dismissed the case in December 2012.)
"A lot of parents started bringing due process cases against them," Cortiella recalls. "Parents were just winning these private placements on procedural grounds, simply because the district was failing to evaluate them on time." So D.C. became a national outlier for the number of children it placed in private schools, with 2,204, or about 4 percent of students, in the 2011-12 school year, compared to a national average of about 1,300 in each state, according to federal data.
All those private placements put a strain on D.C.'s budget. One estimate found the district pays as much as $200 million annually between private school tuition and transportation; in a recent budget, private school tuition cost the district $109 million. In 2006, another court decree, known as Blackman Jones, required the district to eliminate its backlog of over 1,000 placement decisions from hearing officers. That settlement mandated that D.C. introduce $6 million in special education programming as part of an effort to better equip public schools to educate students with disabilities so some could be pulled back in from the private schools.
While D.C.'s situation might be extreme, parents nationwide have seen little progress on the special education policies that dictate their children's schooling. As the word "accountability" has gripped education policy, students have been left behind by special education. Movies like "Waiting for Superman," the advent of "no excuses" schools, states that tie teacher evaluations to students' standardized test scores -- these have defined the current trajectory of the nation's public education system. A slew of so-called reformers insist that opportunities don't matter as much as student progress. With DCPS Chancellor Michelle Rhee at the helm from 2007 to 2010, Washington, D.C., drove this renaissance.
But for students with disabilities, little changed. Schools have few incentives to improve education for them, because for the most part, schools aren't judged on these students' test scores. In fact, some advocates think that recent policy changes leave students in special education programs worse off. Even the Obama administration's post-No Child Left Behind school tracking system has allowed states -- as well as D.C. -- to set significantly lower performance goals for students in special education.
"It's pathetic," says Margaret Spellings, who served as U.S. Secretary of Education under George W. Bush. "We're witnessing a gut job on accountability for special education kids."
While IDEA might soon come up for reauthorization, current law makes it possible for D.C. to argue that a boy like Max has been properly educated, and that he's making progress.
His parents think it's a joke.
THE NEW KID, OVER AND OVER
As D.C.'s cases unraveled, Greg and Maya were diving into uncharted waters. Once they accepted the diagnosis, they had to hunt down resources. They had to learn a new language, an alphabet soup of acronyms that are common parlance in the world of special education services. They asked friends for referrals to therapists. They criss-crossed the city trying to find help and doctors and school advice. They tried everything, from wonky behavioral approaches to diets rumored to help students progress, before arriving at an approach called verbal behavior. Early on, they stumbled upon a meeting of parents of students with autism. Amid a sea of complaints, one constructive but vague comment stood out: One man said that Walker-Jones Elementary School had served his son well, but didn't go into specifics. But when Greg and Maya inquired there, it had no spots left for Max.
In January 2011, Max began preschool at Patterson Elementary School. Greg and Maya say his teacher was stellar, but records show that the school was not providing the services required by Max's IEP. Once, instead of taking him to his required occupational therapy, Maya says the school sent him to a Martin Luther King Day assembly.
After a few months, the school made it clear that it didn't have proper staffing to meet Max's IEP. So he transferred into Bridges Public Charter School, a school a few miles from his house that specializes in integrating children with disabilities. Once again, the teacher was beloved.
Then, a few months later, a slot opened at Walker-Jones, the public school Greg and Maya had heard was outstanding. And besides, the charter school went only through first grade. They had mixed feelings about leaving Bridges, because they felt they were treated well there, that the staff truly cared about their desires and concerns. But by fall 2011, Max transferred to Walker-Jones. The move filled his parents with hope.
There were early signs of trouble. During the parents' first meeting with the school, it became clear that Walker-Jones didn't even know Max had autism. The school ultimately placed him in a classroom with Stephanie Aduso, another teacher whom the family loved.
What they didn't know, though, was that the class was intended for high-functioning children with autism, who could keep up with the general curriculum. Nobody examined Max and told his parents that he would not be a good fit for this classroom. Aduso, the teacher, figured this out immediately.
According to internal emails provided to HuffPost, early in the school year, on Oct. 24, Aduso wrote to her school's special education team expressing her concerns. "The way our program is set up, I can't meet those hours," she wrote, referring to Max's IEP. "So I think this will lead to a placement discussion." The school's special education coordinator, wrote back later that day saying that "this may not be an easy conversation with his parents." At around the same time, Maya wrote to Aduso: "We have NO IDEA why he's regressing all of a sudden."
Over the next few months, Aduso continued to send daily notes home with Max. There were the exciting days when Max sang for the first time, filling in "E I E I O" in "Old McDonald." Then there was the day when Aduso wrote that "Max has been a little off ... not as smile-ly or as giggly as usual."
By March 7, 2012, Max's misplacement in Aduso's class had become so painfully obvious that she brought it up to his parents. "[H]is needs would be better met in a classroom with a lower student-teacher ratio," she wrote to them. Greg responded, saying he was "shocked" by the news.
"That's when we decided DCPS had formally failed our child," Maya recalls.
At that point, Maya and Greg were more than $40,000 in debt. They were working Max hard after school with behavioral therapists and speech help. But the news that Max needed more led them to worry his education would tip them over the financial edge. On March 11, Maya wrote to Aduso that they’d "taken on a dangerous amount of debt ... We can't afford private school."
PUBLIC TO PRIVATE AND BACK AGAIN
When Mayor Gray took office in Washington, D.C., on Jan. 2, 2011, there were 2,204 special education students enrolled in private placements. By last school year, that number decreased to about 1,200. Seventy-five students, DCPS said in response to a data request, returned from private school placement to DCPS between the 2011-12 school year and 2012-13. (DCPS is also reducing private placements through graduation: As explained by Beers, the head of special education for the district, many students in private schools are in higher grades. Last year, 160 students graduated from private placement, and DCPS expects 200 more to graduate this year.) In 2014, according to the DC Fiscal Policy Institute, DC's budget included $32 million it had saved from a reduction in private placements for special education students. The district maintains that its new programs have improved its special education offerings, making public schools a better fit for students with all types of disabilities.
Beers says the district is currently building up capacity so that its classrooms are equipped to teach children who were previously shunted into private schools. And he cautions that these decisions are nuanced. "The mayor wants to continue to see reductions in our nonpublic population. I have agreed ... that this is a goal that we need to continue to pursue," Beers said. "We won't pursue it if we can't ensure that kids aren't getting the services they need. ... There's no one who comes to me when I make a recommendation ... and says, 'Oh no, you can't do that because we don't have the money.'"
Meanwhile, in August 2012, DCPS transferred Max to Tyler Elementary School. Once again, school administrators didn't realize Max had autism. Greg and Maya had requested Emily Schneider, the only teacher in D.C. certified in a special behavioral method called Applied Behavior Analysis. Instead, Max was placed in a class taught by a woman who was a Spanish immersion teacher and had no special education certification.
"Walker-Jones had just wasted a year of our lives," Greg says. "At Tyler he's being taught by a Spanish teacher!"
What's more, they weren't receiving regular reports from Tyler. And the school's supplemental services were no better. Once, Greg walked into the school to pick up Max, only to find him sweaty from humping a beanbag chair. A teacher's aide sat four feet away, reading a book, as if everything were normal.
Another time, when Maya picked up Max, she thought his classroom smelled but made nothing of it. But the smell followed Max to the car: He had defecated in his pants, and no one had cleaned it up. No one even mentioned it. So she walked him back and did it herself.
After parents learned that Max's teacher had been absent for about 25 of 99 school days, the school decided to combine Max's class with another. Max was finally placed in Schneider's class, but now she had double the students.
On Nov. 5, 2012, Greg and Maya filed for private placement. Greg had visited one called Trellis, in Hunt Valley, Md. Trellis used the tactile equipment his parents believe Max needs to focus. For the first time, Greg said, Max seemed at home and engaged. One teacher showed him images on an iPad as he jumped on a small moon bounce. It was heaven. It was also $400 a day.
In late January, Maya and Greg learned that the district had denied them private placement, on the grounds that Max doesn't have to be making progress for D.C. to be in compliance with IDEA. Quoting an earlier case, hearing officer Bruce Ryan wrote, "While the District of Columbia is required to provide [disabled] students with a[n appropriate] public education, it does not guarantee any particular outcome or any particular level of education."
Now furious and frustrated, Greg and Maya they felt the district had wasted months of Max's precious early, "plastic" years.
But what bothers Greg and Maya, along with a slew of advocates, is that Ryan isn't wrong. Technically, schools aren't judged on special education outcomes. "I don't think he's making any progress, but that's not how the school system judges their work," said Amy Dunn, a special education teacher who is friends with Max's parents.
In some ways, the path of Dunn's son Oliver mirrors Max's: He has attended five schools, one that didn't continue past age 5, another that couldn't meet his needs. Dunn calls the changing DCPS leadership "a political football game," from which she says she's benefited.
During Rhee's tenure as chancellor a few years ago, Dunn met with the district's then-special education chief Dr. Ryan Nyankori. Together, they concluded that, despite concerns about "least restrictive environments," Oliver needed to be in a school that serves only children with special education needs. Since that decision, the district has paid for her son to attend Ivymount, a private school in Maryland, where he's been doing better.
But she's worried. Along with other parents, she received a notice from the mayor's office saying that the district would move students from private to public school. "It's scary," she says. "But this is federal law, so DCPS can't have the final word. They can't."
NOWHERE TO TURN
At Max's February IEP meeting, Greg continued to push for more ambitious goals for his son. He refused to accept anything less.
A few minutes earlier, Daniel McCall, one of the district's eight attorneys for the special education division, had kicked this reporter out of the room, then out of the school building entirely. After arguing for the meeting's privacy on legal grounds, he and the special education coordinator simply refused to have the meeting in the presence of a reporter. (The following account of that meeting is based on an audio recording supplied by the family. Both Greg and the school district had digital recorders on and visible during the meeting.)
Greg was livid as the meeting began. He hadn't been told the district would bring an attorney. At one point, McCall intervenes as Greg, the specialists and Max's teacher, Emily Schneider, appear ready to write more ambitious goals for Max's IEP. "Any goal that you put ... the team has to say, 'Do we reasonably feel or believe that we can achieve a mastery?'" the attorney says. "Just be mindful of that, that's what you're agreeing to. If you don't think you have a reasonable belief that he can do that, don't put it down."
"Are you just here to help him craft an IEP that they'll go to court with?" Greg shoots back. "Why are you here?"
"We want to focus on the child's goals, not personal goals," the special education coordinator says.
"It's hard to do that when the gentleman is interrupting and stating how they should write it so, legally, they can defend it in court," Greg responds. The district winds up offering Max $1,500 in therapy, Greg says, or enough to cover Max's therapy for about a week and a half.
That afternoon, Max spends three hours running around his house, jumping on a trampoline, grabbing people's hands and dragging them to do things he can't describe. He wears big headphones attached to nothing, probably because he likes the way they make his ears feel. He tends to stay close to Maya, the center of his universe.
Max is happiest on the swing, spinning like a dancer. Apparently, this regulates his brain. But he's trying to work on his social behavior, and his parents are trying to encourage him. He walks into the kitchen and immediately reaches for the Teddy Grahams. Before he can have them, Maya tries to get him to say cracker. "Ah ah" comes out.
Maya and Greg fear for the future. While they believe a school like Trellis could potentially help Max, they're loath to consider the alternative: Max languishing in lesser schools and winding up later in a group home.
So in March, they filed another claim for private education against the district, hoping for a different outcome. Between the hearing and its resolution, however, the situation worsened.
One afternoon in May, a day after the second hearing, Max came home from school with a hand-shaped bruise. Doctors confirmed it was a handprint. "Bruising on left forearm is very consistent with fingers gripping too tightly," pediatrician Kathleen Lundgren wrote in an evaluation. "It is very reasonable to suspect aggressive and inappropriate care." For Greg, this was the final straw.
"You have once again failed miserably in both capacities," he wrote in a May 16 email to Henderson, Beers, Schneider and a superintendent in DCPS. The paraprofessional who was eventually fired for the incident had been reported for previous misconduct.
Greg and Maya asked that the district reopen the case to include pictures of the bruises -- but their request was declined.
A few days later, they heard back: They won their case, but just barely. The hearing officer sided with DCPS in most areas, saying that Greg and Maya had failed to prove that Max had regressed since starting school. Max, the decision stated, "has been able to progress on some goals." The officer did, however, fault DCPS for the absence of Max's teacher. Max had missed six months of "free and appropriate public education" under IDEA, and on that basis, was awarded with one year of private school funding sufficient for Ivymount. It wasn't quite Trellis, but at the very least it was a school where qualified teachers could provide Max with the individual attention doctor after doctor had said he needed.
Greg and Maya were relieved. They were surprised by some aspects of the ruling, but pleased to have the funding. "We still felt like it was a bad decision," Greg recalls. "Since we were getting private placement, we didn't question it."
But their relief was short lived. After nine days, "our bubble burst," Greg says. DCPS filed an appeal, which prevented Max from starting at his new school. DCPS maintained that Max's school had indeed offered the family the services they needed.
Greg and Maya have been vocal about their plight, bringing attention to what they call their "invisible boy" through a Facebook page and a local news segment. They argue the district is being retributive. "This is part of their strategy," Maya says. "Make us broke and tired, and perhaps leave us with no private school choices in the end that would meet his needs, when this whole evil, endless legal process finally comes to an end."
The family faced a crossroads: Greg and Maya did not feel that they could send Max back to a DCPS school, where he had been lost, ignored and manhandled. And if he started off the year in public school, he would lose his slot at Ivymount. So the couple took a second mortgage on their home, which has provided them enough to pay for a year's tuition there at a whopping $70,000.
"I've already lost three of Max's years," Greg says. "What does it take? We're losing our little boy, and this process is a joke. They keep saying he's progressing, but how come he has no vocabulary left? How come he has poop in his pants?"
So, Greg and Maya filed a counter-appeal and their own injunction in federal court this summer. At first, the judge's response seemed favorable: DCPS, the judge wrote, must implement the hearing officer's decision. But on the 15th page, the judge wrote that the district will have 20 days to stay the initial decision, which allowed the bureaucratic process to continue to unspool.
The ruling is "ridiculous," Greg wrote in an email. "What incentive does DC have to implement these decisions when there are almost no consequences to them for NOT doing so?" he wrote. "DCPS knows all too well that the average family will give up the fight. The emotional cost is staggering."
Now the family is tied up in mountains of legal paperwork. Greg and Maya have filed an appeal in the original case and a counter-appeal in the second. Then there's the injunction they filed to enforce the most recent decision to send Max to Ivymount.
Until they hear back, Max waits. So far, he's made great strides during his first months at Ivymount. He's mostly back to being potty trained. Greg and Maya say he's trying to speak again. He's even sitting still long enough to play games with two people. If no change results from all the filings, he'll have the one year in a decent school.
After that, nothing is guaranteed.
This story appears in Issue 83 of our weekly iPad magazine, Huffington, available Friday, Jan. 10 in the iTunes App store.