TIME Education

Don’t Segregate My Special Needs Child

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But by not integrating children with mental illness into the general school population, we contribute to the ongoing stigma

This week, all my friends are posting Facebook and Instagram pictures of their adorable children, whose forced grins and too-neat clothes suggest that the kids aren’t quite as thrilled as their mothers about the inevitable return to school. But for parents of children who have a mental illness or a developmental disability like autism, back-to-school preparation feels more like manning a war room, complete with strategies, maps and complex diagrams. The enemy? Unfortunately, it’s likely to be the very people tasked with helping your child to succeed: his teachers and administrators.

If your child has behavioral symptoms associated with his or her diagnosis, it’s likely that you’ve experienced that painful phone call—probably right in the middle of an important work presentation–unleashing an arsenal of assessments and tests and meetings with teachers, counselors and administrators. The end product is likely either a Section 504 plan, named for that section of the Rehabilitation Act of 1973, or the dreaded Individualized Education Program (IEP), which is essentially a contract with your child’s school to ensure that he or she receives a free and appropriate public education (FAPE) under The Individuals with Disabilities Education Act (IDEA).

Have I lost you with the acronyms yet? Even if you earned your Ph.D. in astrophysics, you may soon discover that getting an appropriate education for your special needs child is harder than rocket science. Parents are forced to become instant experts, not only in the complexities of their child’s condition, but also in disability rights. I hate to break this to you, but the school district is not your ally in this fight for your child’s education. Neither are the parents of so-called neurotypical children, who don’t understand why their children’s learning environment should be disrupted by your “weird kid” (yes, I have heard that phrase more than once about my bright, funny, sensitive boy).

Combine that already adversarial relationship between parents and schools with well-intentioned but misguided zero-tolerance policies, and you find school districts creating IEP solutions like the one they used for my child: pull-out programs for all children on behavioral IEPs, complete with padded isolation rooms. At first glance, this might seem like an ideal solution: the neurotypical kids get to learn without disruptions, and the students with mental illness and/or developmental disabilities have a safe environment with additional dedicated support from teaching assistants. And since it’s a contained program, it saves the district money in the short term—and we all know how thin most school districts are stretched.

But I would suggest there is an uglier word for this approach to education: segregation.

What is the logical consequence of taking 100 students with behavioral and emotional symptoms between the ages of 12 to 21, 95% of whom are male, and putting them together in a program that will not allow them to earn a high school diploma or to learn to interact with neurotypical peers?

In our society, too often the consequence is prison.

Zero-tolerance policies were developed in the wake of the 1999 Columbine shootings as a way to reassure parents that their children were safe in public school. Statistically speaking, they are safe, and they were safe before zero-tolerance policies too. Just like your chances of dying in an airplane crash are far less than the chances of dying in a car accident, we ascribe far more risk to the school environment than actually exists because of the media ever-presence of statistically rare mass shootings like Columbine or Newtown.

But by not integrating children with mental illness, which admittedly sometimes manifests through challenging behavioral symptoms like unpredictable rage, into the general school population, we are contributing to the ongoing stigma of mental illness. Worse, more often than not, we are condemning these children to prison.

Children like my son are not “bad” kids; in fact, with the right support and treatment plan, they can survive and thrive in public school, and beyond. As a society, we should be investing our resources in educating all of our kids. Early prevention and treatment can change the entire course of a child’s life. Instead of a life on the streets or in jail, a child with mental illness can graduate from college and have a successful career. This school year, I hope that parents, teachers, administrators and legislators will do the math. By complying with IDEA and providing appropriate education to all children, we can save money—and lives—down the road.

Liza Long is a mother, educator and author of The Price of Silence: A Mom’s Perspective on Mental Illness, from Hudson Street Press.

TIME mental health

A Different Ending to My ‘Adam Lanza’ Story

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Long wrote the op-ed "I am Adam Lanza’s mother" two days after the massacre at Sandy Hook Elementary School, to allow herself to get help for her son. Now that Peter Lanza, the father of the shooter, has spoken out, she says she's so glad she did

In November 2012, I happened to hear author Andrew Solomon on NPR, talking about Far from the Tree, his book on children who are different from their parents in profound and life-changing ways. “Must get this book now!” I texted to my fiancé, who sent me a nearly identical message.

We were both thinking about my son, whom I call Michael. In the later months of 2012, Michael’s behavior was increasingly erratic and violent. Because he was so disruptive, he was asked to leave a prestigious math and science academy and was transferred to a restrictive program for students with behavior problems. One morning, a simple request that he return overdue library books quickly escalated into my son making death threats against me. In December 2012, when Adam Lanza killed his mother, my then 13-year-old son was in an acute care psychiatric hospital. I was physically bruised from restraining him as he tried to run into traffic and emotionally exhausted as I realized I had few options to help my son. After more than eight years of searching for answers, we still didn’t know what was wrong with Michael.

As I read Peter Lanza’s honest and heartbreaking assessment of his lost son Adam, I was again struck by the similarities between the Lanzas’ painful story and my own. In the immediate aftermath of the Sandy Hook shooting, when I wrote the blog post that was republished as “I Am Adam Lanza’s Mother,” most of us knew very little about Adam or Nancy. But I knew, because in many respects, I was living a parallel life.

I wrote the words, “I am Adam Lanza’s mother,” not to the world, but to myself. Before I could get help for my son, I had to admit how desperately I needed it. That first step—acknowledging to myself the gravity of my family’s situation, our tenuous and faltering grip on the external trappings of normalcy that I so desperately craved—is what ultimately allowed my son to get the help he needs.

More than a year later, Michael finally has a diagnosis, bipolar disorder, and he is finally on a medication that works. In the eight months since that diagnosis, Michael has not threatened himself or others; he will return to a mainstream school next fall. I wish that Adam Lanza could have followed my son’s path. The child Peter Lanza loved was bright, funny, a “normal weird kid.” What happened? Not even Peter Lanza knows.

Philosopher Claire Creffield, in analyzing the luck factor that separates an Adam Lanza from a similarly challenged child who does not commit mass murder, notes that “a host of chance events come together to make one imperfectly-parented child a killer and another imperfectly-parented child a well-adjusted adult.” Peter Lanza has come to the same conclusion: He told Andrew Solomon, “I want people to be afraid of the fact that this could happen to them.”

I want the same thing. While none of us are perfect parents, I personally do not blame either Peter or Nancy Lanza for what happened to their son. Both parents loved Adam. Neither parent imagined or wanted their child’s horrific end.

This is why what Peter Lanza did by sharing his story with Andrew Solomon is so important. Lanza’s story fills important gaps in our understanding of how a beloved child became a killer—and reminds us as a society that we have an obligation to help families and children before they find themselves on irreversible paths of violence. People have blamed Peter for being a distant father. I received the same type of criticism because I have raised my son for the past several years as a single mother. Yet I do not blame Michael’s father for his illness any more than I blame Peter Lanza for his son. Compassion, not judgment, is what we deserve.

In Lanza’s description of his son’s journey into isolation, I see too many similarities, not only to my own experiences, but to the experiences of millions of children and families. I am a mother, not a medical professional, and yet as I scroll down a list of symptoms that mirror my son’s, I can’t help but wonder why Adam Lanza was never diagnosed with a serious mental illness like schizophrenia or bipolar disorder. Still, I view my son’s very real mental illness as an explanation, but never as an excuse.

As we look at the changes we need to make in our mental healthcare delivery system, our goal should not be reactive—to prevent another Sandy Hook or Tucson or Aurora. Instead, our goal should be proactive—to provide early interventions, appropriate diagnoses, and medical treatment to children and families well before a crisis like Sandy Hook occurs. I am grateful to Peter Lanza for adding his important voice to the chorus of parents who are seeking solutions and change. Peter Lanza’s story is also a tragedy, a little boy lost, a society that turned away, at terrible cost.

Liza Long is a writer, educator, and mother of four children, one of whom has mental illness.

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