Sins of the Mother

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Morning Zen guest blog post ~ Liza Long

Why Blaming Nancy Lanza for Adam’s Illness Is Easy (and Why We Need to Stop)

lizason“Mom, I don’t want to be anymore.” My son, four years old, his eyes swollen and red from sobbing, burrowed his white duck-fuzz head against my chest.

I froze. “What do you mean?” I asked gently. “Everything is okay now. The nightmare is over.”

He looked up at me. “I want to be a zero,” he replied. “I don’t want to be anymore. I want to be a zero.”

Nothing in the parenting books or classes about preschool behavior prepares you for this: your young child’s desire to end his own life. True, “Michael’s” nightmares were getting worse, and he sometimes sleepwalked. Days could be even tougher: Michael would throw tantrums that lasted for hours and left us both exhausted. I didn’t know what to do.

As he grew older, his suicidal thoughts became more frequent and more detailed. He threatened to kill himself several times a week. Though I normalized many things about my son’s unpredictable and sometimes violent behavior, I never got over the suicide threats. They still haunt me.

For this reason, I followed Brittney Maynard’s tragic life-ending choice with a different perspective than many people. While I respect her struggle and her wish to end it (I too have lost a loved one to cancer), I know many other young people who are diagnosed with a serious, life-threatening illness who repeatedly express a desire to end their own lives. My son was one of them.

So was Adam Lanza.

Now a new report from Connecticut’s Office of the Child Advocate details the many ways the system failed Adam, and the children he killed at Newtown in December 2012. One significant finding: Adam was “completely untreated in the years before the shooting and did not receive sustained, effective services during critical periods of his life.”

In fact, if you read the summary of Adam’s early life, it looks like my son’s (and many other children’s) path. Adam had developmental challenges in early childhood. I’m sure at least one person told Nancy, “He’s just a boy,” or “He’ll grow out of it.” School personnel identified social/emotional challenges that became more apparent after fourth grade. I’m sure that’s when they started suggesting that Nancy home school her son, ostensibly for his own good, but actually to prevent disruptions in the learning environment. He was initially evaluated by a costly outside expert (Yale), with a recommendation for a comprehensive treatment plan of the type, no doubt, that bankrupts even moderately wealthy families like the Lanzas. In this respect, my son differs from Adam: we never had access to that kind of resource until my blog about Newtown went viral.

Where my son’s path diverged from Adam’s is at age 13, when my son was finally diagnosed with bipolar disorder. Since that diagnosis and treatment began, my son has not had any violent behavioral outbursts or suicidal thoughts. He is back in a mainstream high school, doing well in all his classes, writing a sequel to his first novel (tentatively entitled The Demigods from Outer Space), and starting a chess club.

But here’s the thing: I don’t attribute my son’s remarkable progress to anything special about my parenting. I was lucky, period. I got a diagnosis for him, and medications that work. And most importantly, I was able to intervene before my son turned 18, despite the many wrong turns we took in the baffling and fragmented mental health care maze early on.

When I tell people—including media professionals—that parents cannot help their sick children after the age of 18, many of them are surprised. After all, if your 20-year old son was in a car accident and suffered a traumatic brain injury, you would be right there by his side, communicating with his healthcare team, and likely even making decisions about his care if he lacked the capacity to do so.

When your child has a serious mental illness and is over the age of 18, it doesn’t work like that. Serious mental illness is classified as “behavioral health,” and in most cases, people who have behavioral health problems have the right to refuse treatment. The very public spectacle of Amanda Bynes’s breakdown has introduced many people to this terrible parental conundrum for the first time.

Unlike me, Nancy Lanza was incredibly unlucky. Yet the Child Advocate report, in the time-honored tradition as old as Eve of blaming the mother, concludes that Nancy “enabled” her son and was perhaps in denial of the seriousness of his illness.

I completely understand how that can happen to a parent who has tried, many times, to get services, and failed. I completely understand how that can happen to a mother who is raising a potentially violent son on her own, without support. And I can completely understand how that can happen to a parent in a society that stigmatizes mental illness and medication, that insists on treating mental illness as a “choice” rather than as a disorder.

Through the years, bit by bit, Nancy normalized Adam’s extremely abnormal behavior. In fact, what seems very bizarre to outsiders becomes “normal” for many families who are struggling with mental illness. This concept is difficult to understand unless you have actually lived it. But if you are living it, I know you’re nodding your head in agreement right now.

High profile murder-suicides like Columbine or Newtown bring attention to the problem of mental illness. Yet two years after Newtown, we still don’t have solutions for children and families. And two years later, both this most recent report and the media are still blaming the mother.

What will it take? How many more families will suffer from tragedies because we lack effective treatments?

Mental health professionals tell us that suicide is preventable. But if numbers are not decreasing, it’s clear we need better solutions, beginning with earlier diagnosis and intervention for children who suffer. That’s one area where I agree completely with the Connecticut Child Advocate report.  A child’s death by suicide is every mother’s worst nightmare. Though Nancy Lanza paid the ultimate price when she couldn’t get help for her son, at least she was spared this: she didn’t live to see her child kill— or die by suicide. 

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lizaLiza Long, aka the Anarchist Soccer Mom, is a writer, educator, mental health advocate, and mother of four children. She loves her Steinway, her kids,and her day job, not necessarily in that order. Her book "The Price of Silence: A Mom's Perspective on Mental Illness" is now available in bookstores. 

Comments

  1. George Patrin, MD/MHA, San Antonio, TX's avatar
    George Patrin, MD/MHA, San Antonio, TX
    | Permalink
    This morning zen topic is so important. We must listen to the survivors of these tragedies, the parents. Behind every preventable tragedy is a child, a person who wasn't cared for by our society, our community. As a Pediatrician sensitive to developmental and behavioral disorders it seemed I was constantly cautioning my contemporaries in medicine and education to consider the behavior(s) of the child are understandable and reasonable responses to a world that didn't seem to care about what they were feeling and going through. And yes, many a parent told me "the other doctor said he was just being a boy, he'll grow out of it," when it was obvious to me we were missing a potentially serious disorder that must be corrected before the window of opportunity was gone. I feel I must apologize to all who commented here and to no doubt dozens more reading the blog saying "Happened to me too." Help is available if we can only find it and then access it. This goes for you, too, Gail. You have wonderful insight into your past history and current condition. Sounds as though your current medical team isn't as patient-focused as they need to be. The one person who comes to mind with a story like yours is Dr. Kay Jamison at Johns-Hopkins University. She was able to survive her diagnosis and life situation by keeping a caring safety net around her and plan for life. You have a good reason to do the same, that wonderful grandson of yours. I encourage you to contact Dr. Jamison's folks and ask how you might get better support in your local community.
  2. Gail's avatar
    Gail
    | Permalink
    i encountered depression in 1990. After a few years of medications and therapy I seemed to stabilize. What I did was hit mania and had no clue but thought I was recovered from depression. In 2007 I hit an all time low. I cried almost constantly. I was about to loose my job so I went back to work. After a few months I could no longer function. I stayed in bed all the time, did not answer my phone, and only ate or drank when my husband brought something. I lost 50 lb and looked like a skelton. I was on disability by then. Since 2008 I have been on any medications available. I have been suicidemore times than I can count. I had ECT in 2012 and it worked for about a year. So I had more ECT in 2013. Again some relief from the hell I resided in most of the time. Here are the holidays 2014. I hate holidays. My anxiety is peak high. Since my memory is so poor my husband has taken over my Xanax or klonapin whichever I am on. I resent the hell out of that. He " rations" these anxiety meds even when he sees me in a non-functional state. I understand waiting to die to get out of this disease. People say get a grip. You're just having a bad day. You are strong. Yeah about as strong as the type 1 diabetes and cancer I "manage". I want to die more often than not so why don't I end it? I was raised in a strong Baptist home and am scared of going to hell if I suicide plus I don't want to harm or cause a stigma on my wonderful grandson. He is all that keeps me alive. I know a lot of bipolar people who have committed suicide and I know it's only time until I join them if things don't change. Can anybody help me??
  3. KathY's avatar
    KathY
    | Permalink
    I had a very difficult time getting help for my daughter. In the state of Washington, my hands were tied because, at 14, she was able to refuse treatment and/or sign herself out of a treatment facility when she was placed after a suicide attempt. My mentally ill, 14 year old daughter, got to make the decision, not her parents! Yet we were responsible for any damages or chaos she caused. It is a nightmare to have a mentally ill child in this state! Fast forward 15 years, I'm raising my 9 year old granddaughter and guess who her mother is?
  4. Tammie Coelho's avatar
    Tammie Coelho
    | Permalink
    Look into this: http://www.nimh.nih.gov/about/director/2014/ketamine.shtml…

    This is the only know medicine to stop suicidal thoughts and it work in just a few hours. Share this with anyone you know who suffers from depression!!! This could save the life of someone you love! It is not yet approved for this use but if you insist they use it they probably will. All emergency room have it for other uses so it is available.

    By now, everyone knows that medication development for mental disorders has hit a wall, pharmaceutical companies have abandoned the search for new medications, and there are no promising new medications on the horizon.1 So it is important to take a moment to consider ketamine, an anesthetic that has been around for decades. Intravenous ketamine was the anesthetic of choice for outpatient procedures in children when I was in medical training nearly 40 years ago. Twenty years ago ketamine achieved notoriety as a recreational drug under the moniker “Special K.” But in the past decade, ketamine has emerged as a potential antidepressant.

    Recent data suggest that ketamine, given intravenously, might be the most important breakthrough in antidepressant treatment in decades. Three findings are worth noting. First and most important, several studies demonstrate that ketamine reduces depression within six hours, with effects that are equal to or greater than the effects of six weeks of treatment with other antidepressant medications.2 The shift from six weeks to six hours has already transformed what we could and should expect of antidepressant treatments.

    Second, ketamine’s effects have been noted in people with treatment-resistant depression.3 Most of the studies to date have tested ketamine in people for whom other treatments were not effective, including both medications and psychotherapy. This promises a new option for people with some of the most disabling and chronic forms of depression, whether classified as major depressive disorder or bipolar depression.

    Third, it appears that one of the earliest effects of the drug is a profound reduction in suicidal thoughts.4 Although lithium and clozapine have been reported to reduce suicide risk, we have not had medications that were specifically anti-suicidal. It is too early to label ketamine as an anti-suicide medication, but the reduction in suicidal thoughts even prior to the antidepressant effect is promising, especially given the risk of suicide in people with severe, treatment-resistant depression.

    There are still a number of questions to resolve about the best dose, the mechanism, and the long-term efficacy and safety of ketamine. Dose-response studies are underway to determine if sub-anesthetic doses may be anti-depressant. While the antidepressant mechanism was assumed to be blockade of the brain’s NMDA receptor, other medications that block NMDA receptors are not antidepressants. And how ketamine would be used clinically is not yet clear. In most people, the antidepressant effects wear off within a week. We don’t know yet if repeated injections will be safe and effective.

    But there is enough potential here that several universities and companies have launched research and development efforts. Reports of efficacy for both obsessive-compulsive disorder and post-traumatic stress disorder have surfaced in the past year 5, 6 Recently the Food and Drug Administration awarded breakthrough therapy designation for the development of intranasal ketamine for treating depression. This is the first time this special designation, usually reserved for drugs targeting an epidemic or a deadly form of cancer, has been awarded for the development of a medication for a mental disorder. This speaks not only to the scientific opportunity but the public health need for having a rapid antidepressant.

    That need is leading to ketamine clinics using this drug “off-label” to treat depression. While the science is promising, ketamine is not ready for broad use in the clinic. We just don’t know enough about either efficacy or safety. But with the excitement generated by early results, we will have more information soon. The doom and gloom surrounding medication development, at least for depression, seems to be rapidly resolving.

    References

    1 Insel T. Treatment Development: The Past 50 Years.

    2 Aan Het Rot M et al. Ketamine for depression: where do we go from here? Biol. Psychiatry. 2012 Oct 1;72(7):537-47.

    3 Aan Het Rot 2012.

    4 DiazGranados N et al. Rapid resolution of suicidal ideation after a single infusion of an N-methyl-D-aspartate antagonist in patients with treatment-resistant major depressive disorder. J. Clin. Psychiatry. 2010 Dec;71(12):1605-11.

    5 Rodriguez CI et al. Randomized controlled crossover trial of ketamine in obsessive-compulsive disorder: proof-of-concept. Neuropsychopharmacology. 2013 Nov;38(12):2475-83.

    6 Feder A et al. Efficacy of intravenous ketamine for treatment of chronic posttraumatic stress disorder: a randomized clinical trial. JAMA Psychiatry. 2014 Jun;71(6):681-8.

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    Publications by the Director

    Selected publications by NIMH Director Thomas Insel

    Science News

    • Groundbreaking Suicide Study
    • Medical Risks Rise Early in Psychosis
  5. Tammie Coelho's avatar
    Tammie Coelho
    | Permalink
    It is sad how many people view mental illness as a choice. I have been treated that way even by some relative and the anti-medication thing is terrible too! I am so thankful for my treatment team prescribing Abilify it has been a lifesaver!!! And finally I am not embarrass to say I depend on my medication to have a stable life...

    Here is an article you may find very interesting:

    http://www.nimh.nih.gov/about/director/2014/ketamine.shtml?utm_source=govdelivery&utm_medium=email&utm_campaign=govdelivery
  6. Joy's avatar
    Joy
    | Permalink
    I suffered with severe depression when I was a child, had multiple suicide attempts in my teen years, but it wasn't until I was in my 30's that I was diagnosed with Bipolar 2 disorder. After that it took years to finally get me where I am today, feeling better and doing more than just surviving life. It's still a struggle, but...I am better. Our mental health system is broken.
  7. Katie's avatar
    Katie
    | Permalink
    I was diagnosed with depression at 14, after being told for two years that my self harm was just a cry for attention and I was "faking it." Itv wasn't until after multiple suicide attempts did someone listen. I was 16 when I was finally diagnosed with bipolar. I was lucky. I am now 22, a mom to a beautiful one year old, I can keep a job, I am married and I am blessed!
  8. Glenda Lantis's avatar
    Glenda Lantis
    | Permalink
    I so agree with you, Liza. I just had a conversation with someone last night about my daughter's bipolar disorder diagnosis and journey. We were fortunate to finally receive diagnosis and begin treatment when she was 7 years old (she's now 18), but she had struggled since birth. The person said, "why didn't you get a diagnosis when she was an infant?" I replied... "it is so unusual to receive a diagnosis at 7, we were fortunate, many times the diagnosis and treatment doesn't come until much later, if at all..." she was appalled - welcome to my world, I thought. I completely agree that we need much better solutions and services for young people. I think many parents try to seek help, but health care practitioners (pediatricians, primarily) and teachers/principals/counselors have so little practical and empirical help to give. Once help is initiated, the shortage of psychiatric professionals specializing in early-onset mental illness is daunting. One step that we can take is to keep an open dialogue to try to help others understand. I am so glad that you and your son were able to get the help that you and he needed and I, too, am empathetic to Nancy Lanza's situation. From another who has been blamed....
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