The Painful Parallel Universe of Special Ed Parenting
By Bob Sipchen
Emotions best described as fatherly push at Alfredo Reyes’ face.
He is among two dozen or so parents gathered in a hotel conference room for an L.A. Unified School District-sponsored “Training for Parents of Students With Disabilities.” Most, including Reyes, have children who have just entered or are about to enter public schools, and these anxious moms and dads have reason to think their child is somehow different from other students.
They want to know what’s wrong. They want to know what can be done.
Reyes, 28, is still trying to sort out where his 3-year-old son, Lenny, fits on the spectrum of human behavior. He’s also struggling to understand where he, himself, fits into the parallel universe of special education parenting. The fact that he came out on this rainy Saturday morning offers a pretty good clue.
He and his wife, Miriam Covarrubias, 29, noticed early on that Lenny was not like his cousins. The boy loves Thomas the Tank Engine. But whenever Thomas toppled off his tracks on TV, Lenny would topple onto the floor. The sound of a passing motorcycle or television static terrified him. He was slow to speak. He learned some things then quickly forgot them. Covarrubias, who packages frozen foods, speaks no English. Reyes, a metal cutter, has been working hard on his, in part because it’s the language of so many of the people who hold keys to his son’s future, he says.
About a year ago, Reyes had district specialists assess his son. The boy began receiving weekly speech therapy at his preschool, but the father still has lots of questions. As he asks the district representatives about options and the inconsistencies in his son’s diagnosis, I can almost see Reyes envisioning his enthusiastic, difficult son in classrooms two, five, 10 years from now.
He looks worried. A bit puzzled. That’s understandable.
Until about 50 years ago, schools tended to exclude students who were too far out of step with their peers. Today, laws require public schools to educate kids with disabilities while treating them, as much as possible, like any other student.
L.A. Unified was slow to embrace such reforms, and for a decade the federal courts have exerted pressure on the district to do a better job of complying with the myriad rules concerning disabled students. For once, I have a measure of sympathy for what the bureaucrats are up against.
About 84,000 L.A. Unified students receive some type of special-ed intervention. About three-quarters of them have relatively minor problems processing what they see or hear, says Donnalyn Jaque-AntÃ³n, the district’s associate superintendent for special education. The rest have more severe disabilities, such as Down syndrome or total blindness.
All are entitled to some services, ranging from, say, a few visits with a speech therapist to full-time enrollment in specialized nonpublic schools at district expense – including, in some cases, specialized residential programs in other states.
Tensions arise when parents and the district have different ideas about a child’s abilities or how much help a school should offer. Given the fuzziness of diagnoses, the range of professional opinion concerning how to educate these students, and the fact that there’s not really a magic ATM with an infinite supply of cash atop the district’s Beaudry Street headquarters, full agreement isn’t all that common.
A couple of weeks after that Saturday morning, I stop by Reyes’ neat two-bedroom home in South Los Angeles.
With Lenny and his younger sister, Melanie, alternatively climbing onto Reyes’ shoulders and playing with a box of blue Thomas the Tank Engine tracks, the father opens an accordion file and pulls out his son’s 24-page Individualized Education Program.
An IEP is the document that determines how a child will progress through the system, and Reyes has clearly spent many hours going over this one.
Although no one can seem to fully agree on a diagnosis, the current consensus is mild autism, he says.
As it happens, one of my Times colleagues has a son with a similar diagnosis. For years she has struggled on two fronts: to raise a boy whose behavior problems seem all too obvious and to persuade the district that the child has problems and is entitled to additional help.
Those all-important IEPs are done annually, and she now has a small stack of the intricate forms. Thumbing through, she points to a page listing all the people – therapists, an attorney, a psychologist, etc. – who attended one meeting on her son’s behalf. This one cost $300, this one $150, this one $50, she says, running down the list. So far, she figures her head-butting with the district has cost her well over $20,000, not counting the days of missed work.
My colleague’s a journalist, adept at sorting through complex information. Her ex-husband is a Harvard-educated attorney. They find the process daunting, frustrating, infuriating, befuddling.
Reyes, who came to the U.S. from Mexico 11 years ago, remains determined. He has been researching autism, along with all the other possibilities of what could be wrong (schizophrenia causes the greatest concern, he says, gazing again at the grinning boy). He has joined a support group down the street. Eager to share what he has learned, he talks to every parent of a special needs child he can find. He stays in touch with his son’s doctor and preschool teachers. A while back he quit his second job to spend more time trying to understand how to get the help Lenny will need to live the best possible life.
I watch him try to stoically suppress the intensity of emotion on his face, and believe him when he says: “I will never give up.”