Dear Ms. Miller

Depending on whom you ask, there were twenty-six, twenty-seven, or twenty-eight victims in Newtown. It’s twenty-six if you count only those who were murdered at Sandy Hook Elementary School; twenty-seven if you include Nancy Lanza; twenty-eight if you judge Adam’s suicide a loss. There are twenty-six stars on the local firehouse roof. On the anniversary of the shootings, President Obama referred to “six dedicated school workers and twenty beautiful children” who had been killed, and the governor of Connecticut asked churches to ring their bells twenty-six times. Some churches in Newtown had previously commemorated the victims by ringing twenty-eight times, but a popular narrative had taken hold in which Nancy—a gun enthusiast who had taught Adam to shoot—was an accessory to the crime, rather than its victim. Emily Miller, an editor at the Washington Times, wrote, “We can’t blame lax gun-control laws, access to mental health treatment, prescription drugs or video games for Lanza’s terrible killing spree. We can point to a mother who should have been more aware of how sick her son had become and forced treatment.” (The New Yorker)

I want to address what Emily Miller wrote about Adam Lanza’s mother not necessarily because I’m a mother to a 13 year-old with a schizophrenia spectrum disorder as well as to a 10 year-old with an autism spectrum disorder but because I’m interested in the truth.  I’m not here to defend Adam Lanza.  What he did was indefensible.  I’m not necessarily trying to defend his mother either.  It is a little too convenient, however, for someone to point the finger at a woman who isn’t here to defend herself or her choices, isn’t it? What can be reasonably asserted based upon what is known?

Adam Lanza was raised in a pro-gun culture with immediate access to weapons and ammunition.  Going to the range was recreational and shooting in the yard for sport as well as handling guns was completely normal.  I’ve just described “Duck Dynasty”.  I’ve also described a good portion of North America yet most of these people grow up within the bell curve.  They don’t wake up one morning and slaughter 27 people and then commit suicide.  As much as my bleeding liberal heart would like to blame guns, I really can’t.  The majority of people who own guns do not go on shooting rampages.  Something was clearly wrong with Adam Lanza.  Emily Miller accuses Nancy Lanza by saying that she should have known and forced him to seek treatment.

I would like to ask Ms. Miller this: How?

It’s so easy to look at the news, feel the shock, imagine if it were you, and then blame someone.  We desperately need to understand so that we can organize our emotional experiences.  Adam Lanza killed himself so we can’t very well drag him into the public forum, can we? Who’s left? His dead mother? What about his father? He admits to not having seen him for two years.  So, let’s talk about what is known.  Let’s talk about the reality of dealing with a mental health crisis.  How easy is it to “force treatment”?

Can you force treatment on a legal adult if you are not their legal guardian? No.  Just because you’re a parent, it doesn’t make you their legal guardian.  You can’t make a legal adult do anything particularly if they aren’t doing anything illegal.  Adam lived with his mother, but it doesn’t appear that Nancy was his legal guardian.  Filing for guardianship is tricky, and one has to be able to prove that an adult is not fit to be without the guardianship of another adult.  How would Nancy Lanza ever have been able to file for legal guardianship or even make a case without a history of prior treatment in something like a day treatment program? Adam Lanza, according to what has been released, had no prior treatment with even a psychiatrist! No judge would grant her guardianship unless there was documented history of mental illness which there was not, aside from sensory integration disorder and an ASD.  So, based upon what has been presented, how would Nancy Lanza ever be able to force any kind of treatment upon her son?

It appears that Adam Lanza was diagnosed with Asperger’s Syndrome as a child.  One must ask this question: Was his diagnosis an educational autism diagnosis or a medical autism diagnosis? There is a difference.  This is a big problem for parents and children faced with an autism diagnosis.  A child can be diagnosed with an autism spectrum disorder (ASD) by a developmental pediatrician or clinical psychologist, but if a school observes a child and finds that their diagnosis does not interfere significantly with their ability to learn, then an ASD IEP will not be granted–even if a child does have an ASD.  This is simply how it works.  On the other hand, if a school sees that a child is not learning well and decides to do an IEP evaluation resulting in a child meeting that state’s criteria for an autism diagnosis, then that child will be diagnosed as autistic by the school–even if they are not diagnosed as autistic by a doctor.  In fact, the child may not be autistic at all according to a psychologist or developmental pediatrician.  Something different may be going on with the child, but, within the educational environment only, the child is viewed and treated as if they have autism.  This is the reality of autism today.  The children with true ASD diagnoses are often overlooked in schools, and the children with educational ASD diagnoses are given accomodations even if they do not have an ASD.  The problem here is that if a child does not have an ASD diagnosis but does, in fact, meet the educational criteria for it, then what is really going on with him? Will the parent know to seek further evaluation? Will the school encourage that the parents do that? Not likely.  The school has just given the kid an ASD diagnosis, but it’s an educational diagnosis.  Not medical.  If Adam Lanza was given an educational ASD diagnosis, then it’s possible that he was, in fact, not medically autistic.  He may have actually had something else going on, but because schools do not generally encourage parents to seek out additional services nor are parents regularly told that an educational diagnosis is not the same as a medical diagnosis, parents are often ill-informed and ill-advised.

The media indicated that Adam Lanza had a problem with empathy in accordance with his Asperger’s Syndrome diagnosis.  It is a fallacy that people with ASDs have problems with empathy.  Cognitive empathy and emotional empathy are two different things.  This is where the term ‘theory of mind’ becomes useful.  A deficit in cognitive empathy, or theory of mind, is often what people associate with autism spectrum disorders, but emotional empathy is certainly not an issue at all.  Autists have emotional empathy.  If Adam Lanza had a true lack of empathy and fantasized about murdering his peers, as is indicated in news reports, then autism was not the only issue at play. (USAToday)  The media is describing someone with antisocial tendencies, not an Aspie.  I can deduce that from reading this article, but, if Lanza wouldn’t even allow his mother in his room, and ill-informed people were telling his mother that his observed lack of empathy was a manifestation of his autism, then what would she have been able to do? What would she have known to do? His behavior simply lined up with what she had been told to expect from him from people viewed by her to be experts.

She believed that her son had autism, a high-functioning form of autism at that.  So, from what is being reported, it appears that she was trying to connect with him using the one thing that seemed to make him happy–guns.  As a parent, this sort of sickens me, but this was the family culture.  Even his father took him out shooting, but his father has not been vilified in the media.  Adam liked his guns.  So did Nancy.  Apparently, his father did as well.  This was how they experienced a connection.  If you believe what you’ve been told by the people who tell you that they know–“Your son has autism”–then Nancy Lanza would have been trying to develop Adam’s joint attention by entering into something he liked to do.  From all the reports, he was not violent.  No one knew what he was really thinking because he didn’t share.  That’s not necessarily autistic behavior.  That’s also antisocial behavior.  I have an autistic daughter.  She talks my ear off.  I know other autistic children as well.  When relationships are formed through attachment, high-functioning autistic children are very relational. Autistic children do seek out relationship.  They just do it differently.  Adam Lanza’s rigidity and unwillingness to let anyone into his world of bloody fantasies don’t necessarily point to an autistic mind.  I know an antisocial personality–unfortunately.  They can appear autistic in many ways, but their ability to plan and even manipulate betray the antisocial personality beneath the flat, quiet affect.

For the sake of argument, what if Adam Lanza had been more open with his mother? What if there was an indication that he had a desire to act out his violent fantasies? What if, as Ms. Miller so bluntly points out, Nancy Lanza could have forced treatment? How would she have done that? Where would she have gone? Do you know where to go if someone you love is having a psychotic episode? Here’s the skinny on how that goes:

  • You can go to the ER.  If they have room, then a shrink might come down for a visit.  If a person isn’t ideating at that exact moment, then they’ll be bounced.  Insurance will not cover a stay at a hospital unless someone is experiencing suicidal ideation at the moment the shrink sees them.
  • You can see your primary care physician whom you will also wait to see.  You’ll freak them out, but then they’ll refer you to a psychiatrist.  You will wait for a long time to see said psychiatrist.  Good psychiatrists always have a waiting list.  Some don’t take new patients at all.
  • There might be an inpatient treatment facility around.  They won’t have room because they never have room.  You won’t get in without a psychiatrist.  Push hard though.  They might let you come in for an intake just to see where you might land on their spectrum of “crazy”.  They will wait list you regardless because there is always a waiting list for residential treatment facilities as well as partial programs and day treatment programs.

Every place you try for help is only interested in basic stability.  This is psychiatric triage here.  Nothing is long-term.  This is entirely up to you to try to establish.  You have to build the care team, and a good care team is made up of a primary care doctor, a psychiatrist, oftentimes a neurologist, and a well-trained therapist.  It can take as long as two years or more to get this team together.  Getting the right medications on board can take a year or longer.  It depends on the illness.  If someone is in the prodromal phases of an illness, then it can take a few years to see the directionality of a disease.  Grace was hospitalized four times in six months.  Her medications were changed each time.  It took two months just to see a psychiatrist, and she was actively psychotic the entire time.  There was nothing that could be done to help her.  All that we could do was wait.  Did it matter that she was suicidal and self-harming? No.  There were other ill people on the list ahead of her that were just as ill.  Let’s not forget this: Grace was compliant.  She wanted help.  What do you do with a non-compliant adult?

Do you call the police? I know a woman with a violent son who has had to call the police often.  He has mental health issues.  There isn’t much they can do for her because, while he’s violent, he rarely acts out towards her.  He is destructive.  He destroys her things in fits of rage.  He threatens to hurt her.  The police know that he suffers from mental health problems.  They usually wait at her house until he calms down.  The jails are not supposed to be treatment centers.  Would a police officer arrest a demented individual with Alzheimer’s Disease screaming at someone in a grocery store? Obviously not.  Their behavior is a manifestation of an illness.  This is the same thing in the case of mental illness particularly where my friend’s son is concerned.  He is also still a minor so she can try to force treatment although he can resist it.  Any child can resist treatment.

Let’s take this accusation made by Ms. Miller and apply it to something else more familiar: “She should have been more aware of how sick her son had become and forced treatment.”  Did you know that every year, 1 in 3 women who is a victim of homicide is murdered by her current or former partner? (online source)  Have you ever tried to help a woman involved in domestic violence? Have you ever tried to get the police involved? Do you know how impossible it is? Everyone involved can know that a man has intent to harm his partner.  There can even be evidence that he has hurt her, but if she won’t file charges, then what can be done? An order of protection can be gotten, but how does one enforce that in a truly meaningful way? A mother can know that her son is ill.  A mother can know that her son likes to hurt women, but how does she force him to seek treatment for that? He’s an adult.  The people in her son’s life might even know that he abuses women.  What can they do? Ask him to go to counseling? Will a man who enjoys hurting others seriously consider doing that? An adult man bent on murder will kill if that’s what drives him.  Treatment will not fix that.  The sociopathic brain is simply wired differently.  Not all batterers are sociopaths, but men who murder women are most likely struggling with antisocial tendencies mixed with some kind of personality disorder.  And it’s not an autism spectrum disorder to be sure.  What do law enforcement officials often tell a woman who is being stalked? We can’t help you until he does something.  Intent is known, but action is needed until law enforcement officials can do anything.

Considering the state of mental health care in this country, the poor access to resources, and the federal government’s decision to dump so much of the responsibility for mental health care onto schools and local communities not to mention the issue of personal accountability given to legal adults, I’d like to ask Ms. Miller again: How was Nancy Lanza supposed to just know that her son was ill and then force treatment upon him?  I haven’t even mentioned health insurance! It is absolutely vital to note that if you don’t have the right coverage, then a lot of programs that might do you some good fly out the window.  It matters what your insurance coverage is, and if you don’t have it? You’re screwed.  Many people have to drive out-of-state to find help.  Ms. Miller would say, in light of what is known now, that you do what is necessary.  Sure! I agree, but what if you can’t? What do you do with a non-compliant adult who refuses to talk to you, only communicates with you via email, won’t let you into their room, and only seems to be exhibiting the symptoms of a diagnosis given to him in elementary school possibly by a school social worker? What if you believe that he’s just a difficult personality that likes to keep to himself because, really, that’s what he appears to be? A difficult young adult that doesn’t seem to like you very much.  He likes violent video games, and he won’t talk to his mother.  Oh, and he won’t see his father.

How many young, male adults does that describe? We only know what we know now about Adam Lanza because officials have been combing through his entire life for a year.  I would like Ms. Miller to tell me exactly how you force treatment on a legal adult who gave no indication of a true mental illness outside of a very old diagnosis which isn’t even a mental illness.  Autism is a neurodevelopmental disorder.  What Adam Lanza’s behavior described was a personality disorder or possibly the prodromal stages of a serious mental illness, but Nancy Lanza would have needed experience in identifying abnormal behaviors and psychology.  We know that she lacked that as do most parents.

Why bother even saying anything? Well, on some level, I do want to hold Nancy Lanza responsible, but where did Peter Lanza, Adam’s father, go?

Peter Lanza said he thought his son was “a normal, weird little kid” but by the time he reached middle school “it was crystal clear something was wrong.”

“The social awkwardness, the uncomfortable anxiety, unable to sleep, stress, unable to concentrate, having a hard time learning, the awkward walk, reduced eye contact,” he said. “You could see the changes occurring.”

He said he thinks about his son and the massacre every waking hour. (CNN)

Autism doesn’t suddenly come on during adolescence, but other illnesses do.  Bipolar disorder often manifests during adolescence as the brain is bathed in hormones.  While schizophrenia usually manifests around the age of 20, early-onset schizophrenia can occur at puberty.  Major depressive disorders are another form of mental illness that can manifest at puberty.  If Peter Lanza saw that his son was struggling, then why did he not intervene? Why has the media crucified Nancy Lanza to the point that she is now being called an accessory to the Newtown shootings in the national narrative even though she died by multiple gunshot wounds to the head? Why has no one vilified Peter Lanza? Clearly, he knew that his son was ill.  He is not reporting that he did a thing about it.  Consequently, his guilt is eating him alive.

Ms. Miller’s accusation represents a terrible truth faced by many parents.  When people see a child misbehave in public, they immediately look at the parents as if the parents have control over their children’s choices.  The fallacy here is that I am my child and my child is me.  I can raise my child to the best of my abilities, but my child is, in fact, a separate entity from me.  Any two-year old makes that fact quite plain.  I can offer my child every resource available, and my child could choose to comply or not.  Nancy Lanza could have made herself available to Adam in every way, and, if you read through all the media reports, you’ll find a mother who was actually quite involved in her son’s life to the point that he would allow it.  Was she in denial? Quite possibly.  It does look like she was present and trying.  Was his father around? No, but Adam seems to have cut off that relationship.  All this is to say that parents are often blamed for the behaviors of their children even though their children are the ones that should be held responsible.

When a child is diagnosed with a mental illness, parents are often blamed all the more.  An autism diagnosis used to be blamed on “refrigerator mothers”.  People judge parents all the time for mental illness in their children.  Ask any parent who has an ill child if they’ve been judged by others.  It’s all too common.  Eric Harris and Dylan Klebold, the shooters at Columbine High School, have been the subject of research, books, and endless media attention and speculation.  Their parents were sued, but were their parents called accessories to the spree killing? The legal definition of an accessory to a crime is:

The accomplice to a felony or misdemeanor is the person who, by aiding or abetting, facilitates its preparation or commission. Any person who, by means of a gift, promise, threat, order or an abuse of authority or powers, provokes the commission of an offence or gives instructions to commit it, is also an accomplice.

How is Nancy Lanza an accessory to the Newtown shootings outside of the fact that she raised her son in a household with access to guns? Even his father taught him to shoot.  Does that make Peter Lanza an accessory as well? His father admitted to knowing that something was wrong with his son, and he did nothing about it.  Is he guilty of aiding and abetting because he did nothing? He didn’t try harder? He didn’t push the envelope with his ex-wife and look around for treatment? What do you do when you have a feeling that something isn’t right with your kid when we live in a country that can’t even protect battered women from known felons?

Come on now! Let’s stop all this rhetoric that sensationalizes these horrible tragedies to boost our readership.  Blame is poisonous.  What Ms. Miller said about Nancy Lanza is, at a minimum, irresponsible and, in my opinion, myopic and ignorant.  Where has she been living? Under a rock? Is she a tsarina in her world, able to give orders to everyone, and all the underlings comply immediately? Does she just point her finger at the adults that she feels need treatment and they bow and agree? Even if she had this omnipotence, access to mental health treatment can be nearly impossible to get.  In a survey given to primary care physicians in Austin, Texas, it was reported:

Fifty-two percent of respondents wrote that they and their staff spend 30 minutes or more per patient when referring for mental health services, with nearly 12 percent saying they typically spend more than an hour. Among those who spend less time, several wrote that they had been forced to turn the responsibility of accessing care over to the patient.  “I am forced to put the burden of accessing mental health services on the patient,” one doctor wrote. “Unless the patient is a danger to self or others, she is the one spending hours trying to find mental health access. I had one patient last week say she made 40 phone calls without finding a psychiatrist to see her.” (PSR)

This is accurate.  After Grace left her second hospital setting, I spent nine hours on the phone trying to find a psychiatrist to treat her.  The hospital released her in a manic state and in desperate need of further treatment.  This is quite normal in the world of mental health care.  The survey also reported:

More than half of the survey respondents reported that the average wait time to see a psychiatrist for patients needing an urgent mental health assessment was four weeks or more.  A large majority of physicians also reported that they are occasionally (43 percent) or frequently (35 percent) “managing psychiatric issues beyond my comfort level.”  Over 95 percent reported at least occasionally seeing negative outcomes in patients unable to access care. (PSR)

I would say that access to mental health care often plays a huge role in the lives of families like the Lanzas.  Even if they knew to seek help, how would they have gotten it? Adam wasn’t compliant, and, if he was, the cost is prohibitive.  Nancy was a single parent.

Several doctors expressed their concern that many private practice psychiatrists have stopped accepting insurance plans and are fee-for-service only, which limits access for low income patients. “This issue is getting worse all the time!” one physician wrote. “We have plenty of cash-only/no insurance psychiatrists but few or none who will see patients on insurance who cannot afford $500-$1000 payments.”

Yet psychiatrists and other mental health care providers are faced with inconsistent reimbursement from insurances and overly burdensome requirements to get visits approved. Many find it best to avoid the insurance companies altogether.  Austin PSR Board member and psychiatrist, Dr. Laurie Seremetis, explains, “The shortage of psychiatrists and the unfair burden placed on psychiatric practitioners as insurance benefits have been ‘carved out’ have made many psychiatrists opt out of the insurance business. It often requires extensive time and the sharing of very private patient information in order to eke out approval for just a few sessions at a time, and even then there are unrealistic and arbitrary limitations placed on psychiatric benefits and diagnoses covered.” (PSR)

This trend is true for most major American cities and even smaller suburbs.  It’s true in my area.  This is why so many therapists and psychologists don’t go through insurance anymore.  Insurance companies do not view mental health problems as a true illness which only perpetuates the stigma attached to it.  Many insurance companies are still trying to get away with not covering autism spectrum disorders as well citing it as an educational problem.  It’s a nasty business.  Ms. Miller’s assertion that we can’t hold access to mental health treatment accountable for what happened in Newtown is actually a contradiction.  She can’t very well accuse Nancy Lanza of being a bad mother for not forcing her son to get treatment while at the same time claim that poor or limited access to sound mental health care is not to be considered as part of the problem.  We don’t get to have it both ways, do we?

So, what’s the truth then because there must be someone we can blame, right?

The United States spends $113 billion on mental health treatment, but most of the money is spent on prescription drugs and outpatient treatment.  The Community Mental Health Centers Act of 1963 pushed for more treatment in community settings rather than in state-run, psychiatric institutions.  According to Jeneen Interlandi in her New York Times article:

By treating the rest in the least-restrictive settings possible, the thinking went, we would protect the civil liberties of the mentally ill and hasten their recoveries. Surely community life was better for mental health than a cold, unfeeling institution.

But in the decades since, the sickest patients have begun turning up in jails and homeless shelters with a frequency that mirrors that of the late 1800s. “We’re protecting civil liberties at the expense of health and safety,” says Doris A. Fuller, the executive director of the Treatment Advocacy Center, a nonprofit group that lobbies for broader involuntary commitment standards. “Deinstitutionalization has gone way too far.”

Access to mental health care is worse than other types of medical services. The Bureau of Labor Statistics estimated in 2010 that the country had 156,300 mental health counselors. Access to mental health professionals is worse than for other types of doctors: 89.3 million Americans live in federally-designated Mental Health Professional Shortage Areas, compared to 55.3 million Americans living in similarly-designated primary-care shortage areas and 44.6 million in dental health shortage areas.  Mental health care is pricey, with 45 percent of the untreated citing cost as a barrier. A quarter of the 15.7 million Americans who received mental health care listed themselves as the main payer for the services, according to one survey that looked at those services from 2005 to 2009. The majority of those who did seek outpatient treatment had out-of-pocket costs between $100 and $5,000.  “These findings suggest that even though the majority of adults have some form of health insurance coverage, there are significant limitations on coverage for mental health services,” federal researchers wrote in a July 2011 brief.  Attitudes about mental health services are another big barrier to care. A 2007 study in the journal Psychiatric Services looked at 303 mental health patients who had, in the past year, thought about going to the doctor but decided against it. The researchers asked them why.  The most frequent response, from 66 percent of the patients, had to do with attitude: They thought the problem would get better on its own. Seventy-one percent agreed with the statement: “I wanted to solve the problem on my own.”  States cut $1.8 billion from their mental health budgets during the recession. That figure comes from the National Alliance on Mental Illness, which notes that states tend to play a larger role in providing mental health services than they do with physical health.  That means that much of the treatment of the mentally ill shifts toward other places in the health-care system. The NAMI report looks at Rhode Island, which has seen a “a 65 percent increase in the number of children living with mental illness boarding in public emergency rooms” after a series of budget cuts.

Recent federal legislation requires more expansive insurance coverage for mental health services. The Mental Health Parity and Addiction Act of 2008 applies to large, employer-sponsored insurance plans. It bars insurers from putting up financial barriers to mental health care that are greater than those created for physical treatments. While there was some concern that the new requirements would lead employers to drop mental health coverage altogether, a poll by the Kaiser Family Foundation found only 2 percent did so.

The Affordable Care Act creates more mental health mandates, by requiring all insurers who sell on the exchanges to include such treatments in their benefit packages.  (taken from Seven Facts About American’s Mental Health-Care System)

It’s not so black-and-white, is it? Suddenly, there are concrete reasons to explain some of Nancy Lanza’s actions.  I get it.  Ignorance sells.  It sells because ignorance stokes fear, and the media loves fear.  That’s ultimately what sells papers and boosts ratings.  Keep people stupid and scared and you’ll be rolling in the dough forever.  I am, however, not interested in fear or ignorance.  I want people to understand.  When you are dealing with a developmental disorder, a neurodevelopmental disorder, a mental health issue, a neuropsychiatric condition, or the like, nothing is fast.  Nothing is easy.  Treatment isn’t easy to come by.  Medications can be exorbitant in cost.  The cost of one of Grace’s medications without insurance would be around $1000 for 30 pills.  Grace takes four medications.  Do you see why people are often not medication-compliant? If you’re under-insured, you often can’t pay for your medications let alone the cost of necessary therapies.  It is simply irresponsible journalism to boil down a situation as complex as Adam Lanza’s to a case of blaming his mother.  He was 20 years-old and showed other behavioral indicators more consistent with something like sociopathy that an uneducated parent would have easily confused with an autism spectrum disorder.

Did Nancy Lanza screw up? We are all gods with the gift of 20/20 vision in hindsight.  It’s all too easy to admit that she did, but it’s not wrong either.  She may have nurtured her son’s mental illness and enabled him, but we know something that she didn’t.  He may not have had autism at all.  Did anyone look into that?  She was guilty of something of which all parents are: Nancy Lanza saw her son through rose-colored lenses.  She simply didn’t see what was right in front of her, and I think that’s why the media is so cruel to her.  She enabled her son and taught him the very skills that he used to take 27 lives including hers.  She did it because she was trying to make him happy.  She did it to meet her own needs, too.  Parents do this all the time.  Seeing our kids smile makes us smile.  If you have a child that is emotionally remote, alienated from you, and hard to reach, you’ll go to almost any length to nurture that connection.  Shooting guns with his mom did it for Adam.  I don’t think Nancy thought for one moment that Adam would eventually turn that gun on her.  Or anyone else for that matter.

But Peter did.  “With hindsight, I know Adam would have killed me in a heartbeat, if he’d had the chance,”  Peter said. (New Yorker)  It seems that Peter Lanza knew that something was wrong with his son, and he left anyway.

I wonder why Emily Miller says nothing about him.  He took Adam to the shooting range, too, you know.


15 thoughts on “Dear Ms. Miller

  1. Very well said. Great Post.
    Yes, the father also mentioned that Adam didn’t want to see him anymore so he had not seen his son for two years. That was the illness speaking…not Adam…and any INVOLVED parent who participated in his/her child’s recovery would understand that. A parent shows up…period.
    My heart hurts for this father…but if any lesson is learned here…it’s to toss the ego aside and show up.

    • The whole thing is tragic. All of it. I am beyond frustrated at how the media is going after the mother. She isn’t here to speak for herself. It’s so easy to go through her life with a fine-tooth comb and the hang her out to dry. We know the whole story. She didn’t. I look at the families from Columbine who sued the shooters’ parents! As if that’s going to being their children back? They lost their children, too, AND they have to live with the fact that their children were murderers as well. I don’t understand people. The litigious and mean nature of people seems to trump doing what is integrous.

      • I agree…one of the most hurtful things a close relative said to me (when I shared our younger daughter’s diagnosis) was, “I’m going to talk to your husband first to see if this is really true. I think you are just creating a problem so you can avoid facing an empty nest in a few years.” I’ve forgiven but not forgotten that comment. My husband was hurt as well as I carry the bulk of the caregiving responsibilities (he works while I stay at home and provide caregiving…but he is in caregiver mode when he is home).
        People put a lot more on me than my husband…they come to me with advice, suggestions, blame, etc…he gets a lot of support…very frustrating to both of us.
        One of the questions I am asked most often is, “How is your poor husband handling this?” Then they proceed to tell my how I need to nurture him and make him a priority. He has shared that rarely has he been asked this same question (and rarely has he been advised to nurture and support me).
        I told my husband once, “If she does not survive this illness, you will be flooded with support (especially from women) and I will most likely be shunned by a majority of people we know.”

      • Oh, you have my undying empathy on this. You are speaking my language here. This is probably one of the bigger reasons I have avoided certain environments. A couple we know came to our house last summer, wanting to visit, and I told my husband to prepare for the empathy onslaught from them while I was relegated to maid. They both sat as his feet and asked him all sorts of questions about his work, life, and personal interests. When I came into the room with their coffee, I was scolded immediately, “MJ! You should be so thankful for this man right here. He is so supportive of your staying home and caring for your children. Look at him! I mean, he just works so hard to provide for your family! I hope you know what a gem you have here,” she finished, patting his knee while her husband looked on with masculine admiration. I had to work very hard not to say something sarcastic. I just stared at my husband who was shifting VERY uncomfortably underneath my stare. “Boy, do i!” I replied enthusiastically. He smirked at me knowingly. I told him that would happen. I was then told that God had ordained Grace’s illness by the husband and I ought to be an obedient wife. Then, the wife told me that my kids were overdiagnosed and trying to fulfill the criteria of their diagnoses by manifesting the symptoms of the illnesses given to them. They weren’t really ill at all. I just lacked faith. It was implied that my relationship with my mother fractured and this might be why my children were ill. Some kind of punishment. So, yes, my husband is a treasure of all treasures, and i’m some sort of harpy who brought damnation on my children. Or…something. Yeah, I told my husband that if I died, women would line up to marry him because he’s cute, a successful professional, and women have this thing for needing to fix things for lonely men. If he died? I would be viewed as the equivalent of the Bubonic plague among women. Also, you know, I’m a harpy…or something…who will bring hellfire and damnation upon her entire family. Oh wait, I better go be a good helpmeet and make more coffee lest my oldest daughter catch something like an Axis I disorder! Ooooh, I do have issues with all that nonsense. I’m not bitter. Not at all.

      • I’ve seen this same thing you’re mentioning with the different father/mother dynamics playing out a bit online lately too…. people posting photos of fathers doing very everyday things like taking care of a baby, or sleeping with a baby, or just HOLDING a baby, and people flock to it and coo over what a great dad the guy obviously is when all he’s doing in the photo is like… the bare minimum of being present. I personally don’t ever plan to have kids and am sort of terrified of the whole idea, so I have tremendous admiration for anybody who can manage even *babysitting* kids, much less caring for children full-time, much less trying to cope with any additional challenges like what you’ve described in this article. But people treat fathers being engaged in fatherhood like they’re doing some massive noble thing, and mothers being engaged in motherhood get constant criticism about how they’re doing it “wrong.”

      • Thanks for commenting and reading, Mac. You know, I want to be sure I’m not misunderstood. I value men and their role in families. I couldn’t do what I do within my family without my husband. I’d be a big mushpile on the floor without him. That being said, I just don’t understand, as you’ve reiterated, why women are the targets of such harsh criticism while men are given such a wide berth. It’s weird. Is it woman on woman? Women are very hard on other women, and there is a well-known resentment between stay-at-home moms and working mothers. Is it fear? Is it Freudian influence? That guy still has a tremendous influence on modern perceptions of mothers and their influence on their offspring. In any case, I relate to what you’re saying here. I see it often, too, and the inequality is notable although I wonder what the male caregivers would bring to the conversation. What is their perception? Clearly, Peter Lanza is tormented, and it’s tragic. And, speculation aside, I don’t blame him any more than I blame his ex-wife. In the end, I don’t think the Newtown shootings can be explained, and I don’t think one can blame the parents. The fault lies with the shooter.

  2. As the adult child of a now-deceased mentally ill mother, I cannot tell you the countless ways this spoke to me.

    People in my hometown community often clucked about how my siblings and I should have done more for our mom. For them, there were binary options: help or don’t help. They saw none of the obstacles to obtaining treatment, obstacles you address eloquently here. The core of them, in our case, was: Is she an immediate threat to self or others?

    If “no,” do not pass go. My siblings and I are educated, articulate people versed in seeking and obtaining resolutions, but there was not a thing we could do to force my mom to obtain treatment without proving harm was imminent.

    It was easy for others to stand on the outside and say “tut, tut,” but to anyone who has been on the inside of such a situation, that is a terrible triad of shamefully judgmental, ill informed . . . and useless. No good was worked from it. My mom’s life wasn’t made better. My siblings’ lives weren’t made better. The cluckers didn’t see an improvement in their lives. So what was the point?

    I applaud your thoughtful address of this complex situation. It would be nice if we had easy answers, but the truth is, we don’t. And even when we do have the knowledge? That’s not enough for resolution in the light of the U.S. approach to mental health as it actually exists now.

    • Thank you, Deborah, for commenting. I feel like saying ‘sorry’ for what you’ve experienced is a flaccid attempt or a platitude. I, too, have a mentally ill mother, and I’ve had so many people “should” on me over the years. It’s alienating to say the least. “Go to the hospital if it’s so bad.” “Just go see someone for goodness’ sake!” “Well, isn’t there a drug for that?” I wish I could say that I was always enlightened even after every thing I experienced with my mother, but it all fell into place when my daughter became ill. Sometimes I think that it takes many people speaking up, not with anger, but with persistence and tenacity. Eventually, it has to make a dent in the dome of ignorance. I hope…I wish you all the best.

  3. Deborah sent me a link to this article and I’m really glad she did… it was a difficult but terrific read that had me nodding my head at my computer the whole time I was reading. I think the stigma against mental illness is such in this country that it takes a lot for a person to even acknowledge that they need care, and that’s assuming that they’re in a fit mental state for that kind of self-examination in the first place. I have severe anxiety and depression, and I think maybe ADD, and those things have always felt like just such a part of my existence that it took a long time for me to think that maybe I could improve the situation if I actually sought help. Then of course when I went looking to figure out how I might GET help, I learned that I just can’t. I’m unemployed, in part because of the worsening symptoms I’m suffering, I fall into the ACA’s Medicare gap, and nevermind spending 9 hours on the phone, I’d be having a panic attack if I even tried. There’s a free mental health clinic in my area but they’re understandably so swamped that it’s impossible to get an appointment. I doubt they’d even have time to do much more than work on prescriptions, nevermind the cognitive behavioral therapy I probably need.

    I’m really lucky to have a supportive mother, but I feel like she’s constantly let down by me not somehow seeking out treatment, when from where I’m standing it’s literally impossible, and every time I try it just throws me into yet another endless depressive spiral. I meanwhile feel like my problems are all a personal failing because I don’t even have a real diagnosis, maybe I’m just a hypochondriac, etc etc etc. It’s a pain that feeds on itself, and our system does nothing to help while illness just devours people whole.

    It doesn’t surprise me at all that people blame Nancy Lanza, particularly since she’s a woman and she’s not here to defend herself. We like having pat answers, just being able to point to somebody and go, yep, it’s their fault. I think people get their ideas of what mental health care is available from movies where either everybody seems to be able to afford a regular appointment with a psychiatrist if they need one and everybody can consult their trusty therapist for every minor problem in life, or people who are a danger are committed and get treatment (or just waste away in Arkham Asylum like they deserved it).

    • WordPress has a nasty habit of eating my comments! I was just in the middle of writing out a comment! Mac, thank you so much for your willingness to share and be open. I was so moved by what you shared, and I want so desperately to lift your burden in some way. What you wrote about your reality is exactly why I wrote this post. It is representative of the shared experience. So many people are in a similar situation, and, like you, they don’t know where to go because the options are so limited. It takes a tremendous amount of drive and tenacity to face the behemoth of the mental healthcare system, but, for many people suffering, part of their illness is, in fact, a loss of drive. People are accused of being indolent and lazy when really it is a manifestation of their illness. They need a proper diagnosis, treatment, and continuing care, and they cannot be expected to do this alone.

      If you are unemployed because of your illness, then you need treatment. What I’m going to say I say with tremendous empathy and respect. Firstly, you are not a failure or a let down. A person cannot BE a failure because failure is an event. Not an identity. Secondly, getting treatment for something as mundane as the common cold is a process. If you apply that paradigm to dealing with the bureaucracy of seeking treatment for mental illness, then it might begin to look more doable.

      When I was getting Grace’s care team together, it was difficult to say the least, but I broke it all down into steps. Sometimes I had one goal a week. I have three other daughters and a life. Grace was in crisis, but I didn’t want her crisis to cause another crisis. I had to contain it. So, one week it was about finding a psychiatrist. In my search for that, I was led to an in-home crisis stabilization program which ended up being a life saver. That program connected me with a county case manager and a psychiatrist as well, and the case manager connected us with services and grants that are still in place now. Sometimes it just takes picking one thing. Make a list of the things that need to be done. For you, you need a diagnosis because a proper diagnosis will get you proper treatment and may open up doors for services. Unemployment due to illness often gets services. So, enlist your supportive mother. As a mother, I can tell you that your mother loves you. Have her go with you to the Free Mental Health Clinic. Have her speak for you when you cannot. Have her distract you when you panic. And make that your first goal. Make that THE goal. And, if you don’t make it on your first try, then keep at it. That’s what tomorrow is for. You just keep at it until you succeed. That is how you take on this behemoth. One bite at a time. One day at a time. I hope that I don’t sound pedantic. I’m not trying to be. I have suffered from anxiety in the past as well. I know how paralyzing it can be. My “one goal at a time” may not be helpful to you. It’s what worked for me when trying to make a way through the labyrinth known as the mental healthcare system in America.

      In the meantime, you might find this book helpful. I have the original DBT Workbook, and it’s just excellent. This one is the DBT Workbook for Anxiety:

  4. Pingback: Six Hands for Lifting: On my mom, mental illness, fear and hope | The Monster in Your Closet

  5. I wish everyone would read your blog. You describe so much of my thoughts and even a lot of what I have faced. It is nice to see someone who actually “gets it.” I only wish other people would take the time to “get it.”

    • Before my daughter was diagnosed with COS, I was probably one of those people who didn’t get it. I knew that something wasn’t quite right because I have another child with an autism spectrum disorder and that journey has been all sorts of interesting. But, I had NO idea how truly messed up the entire treatment approach, mental healthcare system, and even view of people with mental health issues WITHIN the medical community is. It is broken. And since everything within America seems to follow a medical model and even the sneeze has been pathologized, if the medical community can’t get its act together around mental illness AND if the medical community is arguing about the very nature of “mental illness”, then Joe Average American–who expects Joe Average Doctor to tell him what’s true about most things related to the body–will still live in the dark ages of beliefs when it comes to mental illness because that’s what seems to be trickling down from the top of the current medical model. In reality, that’s not what’s really happening, but that’s what it LOOKS like.

      So, as I’ve discovered, it’s up to the caregivers to come to the table armed with the latest research because there are some good doctors and therapists out there who don’t know what they don’t. And, it’s also up to us to educate other people in order to eradicate the stigma. As you pointed out, I get it. But, you know, I didn’t get it once upon a time. And if I get it now, then it’s possible to teach others to get it, too. And isn’t that amazing?!

      Thanks for reading. And thanks observing that I get it. That is the biggest compliment that you could give me.

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