WBUR

‘I Am Adam Lanza’s Mother’ Blogger Reveals Regrets, Hopes For Mental Health Care

The essay “I Am Adam Lanza’s Mother” went viral after Adam Lanza went on a shooting rampage in Newtown, Connecticut, in 2012. In that essay, writer Liza Long, who’s based in Idaho, revealed that she was fearful of her then-13-year-old son, who she said sometimes became violent and threatened to kill her. Since then, Long has become an advocate for families dealing with mental illness. She was in Massachusetts Friday addressing the Parent/Professional Advocacy League. WBUR’s Deborah Becker met with Long and asked her what, if anything, has changed in her family since she wrote that very personal post.

"I Am Adam Lanza's Mother" blogger Liza Long addressed parents and other advocates of children with mental illness Friday. (Deborah Becker/WBUR)

“I Am Adam Lanza’s Mother” blogger Liza Long (Deborah Becker/WBUR)

Liza Long: I’m in a very different place. By speaking out, by my sharing my story, I was able to consult with a doctor. We got a diagnosis for my son. He was re-hospitalized again a month ago, in May, where he was diagnosed with bipolar disorder. And that diagnosis, after more than eight years of struggle, of pain, of frustration and even fear, I have my son. His moods have been stable on Lithium. He has not threatened harm to self or others in more than a year. He plays soccer now, and he’s headed to a mainstream high school next year. And for me to say those words, that in my family is a miracle. A year ago, I didn’t know what our future held. But whatever it was, I didn’t think it was good.

Deborah Becker: You got a lot of criticism for that—mainly going public. I know you didn’t use his real name, but folks said you were compromising his privacy and that can follow him around. He’s young now, but what do you say to those folks who say you may have compromised his privacy here, and should you have done that?

I think, first and foremost, that privacy is an important concern. I took those concerns very seriously. The real challenge here, though, is when we talk about privacy with mental illness, what we’re actually talking about is stigma—because if I had written about my son having cancer, I don’t think I would have had those criticisms. What both my son and I feel we have to do is shift the conversation to a place where it’s OK for everyone to talk about mental illness in the same way that they could talk about cancer.

Do you have any regrets?

If you had asked me that question six months ago, I would have had to honestly say yes. And I don’t talk very much about why I would have had to say yes, but it involves that a judge in Idaho determined that my two younger children were unsafe because of my son who had mental illness, and I lost my two younger children for a period of time. I hugely regretted what I had done. I can’t get that time back with them. As we look at the wide number of families who are able to talk, who are able to share their stories, we have moved beyond regret to the feeling that maybe we said something important. I think if people don’t criticize or challenge you, you probably didn’t say something that needed to be heard. I touched a nerve.

Liza, you’re here in Massachusetts today to speak with the Parent/Professional Advocacy League, which advocates for children with mental health needs. And your visit comes after we’ve had another mass shooting—this one at the University of California at Santa Barbara, or near it, anyway. And so I wonder what you’re going to be telling the group here today and how it might have changed because of that recent tragedy.

That’s the real tragedy of this situation, is the message hasn’t changed at all. The message is the same. It’s that our mental health care system is broken. It’s not helping families. It’s not helping communities. Elliot Rodger’s family tried to get help for him. They knew there were problems with their son. And still, they couldn’t get him in treatment. If a rich Hollywood family can’t get their son the treatment he needs, who can?

What is most important in this process right now, would you say, in terms of trying to address this problem from the legislative level in Congress?

There’s a bill, HR3717, and I have blogged in support of this bill. People are opposed to it for a variety of reasons. Opposition groups say that it requires forced treatment. And what they’re referring to is the assisted outpatient treatment provision that’s in the bill. What assisted outpatient treatment does is it gives us a last stop, a safety net, so that we can treat people in the community instead of having to treat them in jail. And people have said, “Well, but they don’t have choice about that treatment.” But we have to look at the illness and say, “Do they have choice at all?”

But it is difficult to draw that line as to where somebody’s civil rights are, and whose interpretation of their illness is correct. So that’s very, very tough. And I believe the standard now is someone has to present a danger to themselves or others to have to go into treatment. And this would essentially remove that standard?

You could not put a person into treatment if there had not been numerous attempts to already get treatment for the person. But you really identified one of the challenges with mental illness by talking about the difficulty in diagnosing. That exists today. So really when we look at this problem, sure, we’ve got the legislative component of it, where we could do a much better job of making sure that people—children, families—get the care that they need. But on the other hand, we also have to do a better job of diagnosing these disorders in the first place. There’s a lot of promising research out there.

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  • Lawrence

    Please don’t try to distort the truth about forced institutionalisations.

    Just watch this innocent women forced against her will into a mental hospital for over a month. She screams at the judge, her family and the court at the end. Chilling! And it can happen to you.

    http://www.usatoday.com/story/news/nation/2014/01/31/woman-held-in-psych-ward-testifies/5089405/

    Take the 3 minutes to watch this and you will change your mind.

  • Thinkfreeer

    “after we’ve had another mass shooting” No, we’ve had a mass killing, using the FBI’s definition of four or more deaths during the event. But only three of the murders were by shooting (the other three were by knife). That does not qualify as a mass shooting. So reporting it that way is misleading. As was reported by USA Today on 12/3/2012, “Concentrating on just one type of mass killing — or only on those that get a lot of attention — may be worse than just using the FBI data, because it can skew public understanding and lead to ineffective policies, says Grant Duwe, a senior researcher with the Minnesota Department of Corrections, who has written a book on mass killings based on a data set he built covering the 1900s.

    “Accurately accounting for mass killings — having a definition, sticking to the definition, trying to find all the incidents — that may seem somewhat pedantic but it’s actually very important.”

  • Ellen Chambers

    There is another culprit in our society’s long-standing failure to address the needs of individuals with mental health disabilities (and other disabilities that can sprout mental health implications when not properly supported): our public schools.

    Like it or not, schoolchildren with special needs have a legal right to educational services that will prepare them for further education beyond high school, employment, and independent living. Like it or not, these services must be delivered in a manner that allows them to make progress at a rate commensurate with their innate cognitive ability. Like it or not that means school districts must address a student’s mental health issues that impact on that mandate. That’s the law. If you don’t like it, it’s a free country, you can lobby Congress to change it. Until then, that’s the law.

    The reality, though, is very different, and therein lies the problem (actually, therein lies the ticking time bomb.) Public school districts in Massachusetts (and nationally) violate students’ special education rights at an alarming rate. According to the Massachusetts Department of Elementary and Secondary Education (MDESE) between July 1, 2011 and June 30, 2012 there were 715 such violations recorded in the Commonwealth. Those are the violations that were discovered… the actual number is hundreds of times higher.

    We’re not talking about pesky little paperwork violations. These are substantive violations that have an immediate and negative effect on the lives of students with special needs and their families. Some of these students present with primary mental health disabilities, others develop secondary psychiatric issues due to years of preventable academic struggle and failure and the the emotional battering that goes along with that. Tens of thousand of Massachusetts students with disabilities are failing at rates far out of proportion to their innate abilities. Anyone wanting the numbers to prove this can contact me privately at emchambers@charter.net

    I am working a Massachusetts case right now involving a 15 year old boy with primary diagnoses of autism and obsessive compulsive disorder. This young man has great potential, he is not cognitively impaired. However, his autism makes it very difficult for him to control his behavior. Over the past year his behaviors have escalated alarmingly, despite the best efforts of his family to work with their local school district to address them. He has had two psychiatric hospitalizations in this year alone because he presents “a risk of harm to others” according to the hospital. His psychiatrist, who has treated him for over two years, states he “has had a significant increase in sexualized and assaultive behaviors, self-injurious behaviors, and verbal threats towards others.” His pediatrician who has treated him for 13 years has written to the school stating his “autistic symptoms present significant and imminent danger of serious bodily harm to both himself and those around him.” The school district has received similar letters from many others involved in his care, and all have recommended he be placed immediately in a residential school equipped to work with him.

    This wonderful young man, through no fault of his own, is a ticking time bomb. Why? Because his school district has turned a deaf ear to the warnings of multiple clinicians, and has ignored it’s legal obligation to properly educate him. Meanwhile he, his family, and his community are, today, in “significant and imminent danger of serious harm.” The school committee, school superintendent, school special education director, and the local police have all been notified. Despite all of this, his family’s only recourse is to hire a lawyer at many thousands of dollars (which they don’t have) to take their school district to a hearing to force them to comply with the law.

    I spoke with the school district last week and pointed out that this case is not at all unlike those of John Odgren, Adam Lanza, Phillip Chism, and Elliott Rodger. Still, they refused to place him in a residential school. They gave no cogent reason for their position.

    A tragedy could very well be in the making here, everyone knows about it, and NO ONE is doing anything to prevent it. And, God forbid, if something tragic does happen, I can assure you the school district will not be held to account. We have a broken, dangerous, mental health system. That’s well known. We also have a broken, dangerous, public education system that has flown under the radar for decades, inflicting damage every day.

    Ellen M. Chambers, MBA
    Special Education Activist
    Massachusetts
    (978) 433-5983
    emchambers@charter.net

    • velvinette

      Go Ellen! Seriously, well said and overdue. This kind of thing is a money issue. The schools are probably thinking they are not supposed to be mental health providers. But most kids who go to residential schools do so due to behavior issues. (Think about all the kids that need the services provided by these places but do not have behavior issues, want to live at home, or can, and there are no programs for them or the will to provide those.) and then there are kids who do have one violent attack, say, get what they have done and realize they need to address this, but to be taken from their families at that point would be traumatic. They would be medicated, whether their families want it or not, probably, and if they are teens their families, and by extension society, would lose them, because they would never become the independent functioning members of so eith they could be. What I think schools and other institutions need to do is listen to the people involved, and trust them to know what is needed. This is so often not the case. They think parents are the last ones to listen to, often, because they are so close to the person they are not objective. While they may not be, that doesn’t mean they don’t know what is best. Judgement is what’s needed, based on knowledge, which few, as far as I can see, people have about many of the issues they are given power over people for. And the experts go by tests which don’t show the real life situation. Like the cops who deemed Rodgers not a threat. Too many people, too little understanding.

    • Tricia

      Excellent post, Ellen and right on point!

  • MarionKing

    Ellen, Thank you for such a clear and compelling discussion of this issue. I have experienced the failure of my public school to address the needs of my children, one of whom has mental health needs secondary to his autism diagnosis, and the other of whom has a primary diagnosis of mental illness and a rare, complicated physical disorder.

    I also heard Liza Long speak yesterday in Marlboro about stigma, and speaking out, and about how her state’s Child and Family protection services provided her with a horrific ultimatum.

    My advocacy on behalf of my children and as a the Vice President of the Board of Directors of SPEDWatch have been used against me by my school district and the legal system, as if advocating for all children, my own included, was somehow indicative of some parenting flaw.

    The world has gone mad.

    The sooner that parents, educators, first responders, elected officials, social workers, medical and mental health providers, aunt and uncles, grandparents and siblings, friends and neighbors, in short, all of us, shout from the rooftops that schools and mental health systems must collaborate and actually MEET the needs of our children, the sooner we will have an end to the stories of Adam Lanza, Elliot Rodgers, Ellen’s young autistic client, my children, and many more.

    Marion King, Foxboro MA
    http://www.spedwatch.org

    • Lawrence

      Meeting the needs of our children does not, or rather should not mean putting kids on drugs needlessly.

      • informedLI

        When mental illness has so impaired your ability to lead a normal life- how is taking a drug that improves your function a “needless” therapy? Manic patients often do not sleep for weeks at a time- they engage in wildly risky behavior that threatens their life, depressed patients contemplate suicide and many actually do it. These are life threatening illnesses- just like heart disease and diabetes. Would you consider insulin a “needless” drug?

        • Lawrence

          You don’t seem to be living up to your screen name. You are misinformed. Indeed I said that kids should not be put on drugs needlessly.

          Let me rephrase it: A needless drug given to a child is not meeting the needs of our kids.

          Let me rephrase it again: When a kid that is better off with a drug free approach, then the drugs that child are receiving are needless.

          Again:? A child receiving a needless drug, that is, one that is not clinically needed, then his needs are not being met.

  • Nvadvocate

    I completely understand your concerns as parents. I have a daughter labeled schizophrenic. She was raped at 12, on a trip by an extended family member, then ran away, and was sexually exploited on the streets, finally marrying an abuser and enduring unbelievable violence. But, I am also a member of the patient’s rights movement, and have seen the vast extent of abuses family members perpetuate on vulnerable members. Wives refusing to have sex, locked up on a husband’s word, adult children locked up for their parents peace of mind, when they were just not living up to parental expectations. Gay children locked up for claiming who they are… The list goes on. Mental health is on the right track with Trauma Informed Care, switching the question from “what’s wrong with you?” To “What happened to you?”

  • Nvadvocate

    Part II: we do not need improved ability to lock people up, we need a less brutal more positive mental health approach. We do not need to eliminate people’s rights. We need a system more responsive to its patients needs and school systems that can recognize aggression as a potential outcome of depression, anxiety, and harassment. That is what we really need. We’ve attempted for years now to stop the use of seclusion in schools, and limit restraint to emergencies. Good luck getting an end to abuses, but where private psychiatric facilities stand to make big bucks you may have a chance. Money controls politics. But when the locking up begins, prepare for a carnage you never could have imagined. Hanging a label on a person who has suffered abuse of some kind is so easy. Hitler did it quite effectively. Do we really want to go there?

  • Lawrence

    Everything you need to know about her proposal in just a 3-min. video.

    http://www.usatoday.com/story/news/nation/2014/01/31/woman-held-in-psych-ward-testifies/5089405/

  • Ellen Chambers

    The young man about whom I wrote was admitted to a psychiatric hospital, again, today. That makes 3 such hospitalizations in 5 months.

    That is all (as they say)

  • Pamela Valemont

    I have just seen a picture on the Internet of Adam Lanza at one year of age or possibly younger, playing with a live gun, surrounded by an arsenal of weapons. His
    Dad now says he wishes he had never been born. I am sure Adam also wishes
    this now, in retrospect, that he had never been born, certainly not into
    that family. They, the crazy gun culture of America to which they ascribed
    and contributed, combined with the absence of tight gun laws in the USA
    are entirely responsible for this incredibly cruel tragedy. There is no
    test that can safeguard the community against such a crazed gunman, and no
    way of knowing when they will strike, where, or at whom.

    Adam Lanza and the Newtown Massacre ebook

    http://www.lulu.com/shop/pamela-lillian-valemont/adam-lanza-and-the-newtown-massacre/ebook/product-21281329.html

  • Guest

    Below, left: My book on Adam Lanza from the point of view of a forensic numerological criminal profiler. Right: Adam Lanza playing with guns amidst an arsenal as a mere baby.

  • Guest

    Adam Lanza as a baby

  • J__o__h__n

    Unlike Adam Lanza’s mother, she hasn’t given her son easy access to firearms.

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