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30 Minute Life (The End is Not as Fun as the Start)

Last night I watched the Frontline/Hartford Courant piece “Raising Adam Lanza” on PBS. It was slightly less than 30 minutes in length, with the other half being taken up by “Newtown Divided,” about how the citizens of Newtown have divided over the issue of gun control.

 Link to Frontline “Raising Adam Lanza”http://www.pbs.org/wgbh/pages/frontline/raising-adam-lanza/

Link to Hartford Courant article “Raising Adam Lanza” http://www.courant.com/news/connecticut/newtown-sandy-hook-school-shooting/hc-raising-adam-lanza-20130217,0,5614292,full.story

At least I think that what’s the second part was about. I didn’t watch it. Frankly, I am tired of listening to the gun control debate. Or, rather, I am tired of the voices shouting to be heard over the din. The voice I really wanted to hear is a voice so quiet you have to put your ear to the ground, straining to hear any sound from inside the earth, desperate to hear something but knowing that whatever you hear is your own imagination.

 

I wanted to hear from Nancy Lanza.

 

Of course, she is dead and the dead can’t speak.

 

The piece started off with the number 26. 26 victims. President Obama read each one of their names.

 

Except there were 27 victims. Adam Lanza’s first victim, his mother Nancy, is left out.

 

This interests me. Why?

 

In 1999 in Littleton, Colorado, the students of Columbine raised 15 crosses. 13 for the victims and 2 for the shooters, set off to the side. Columbine High School acknowledged all the dead, even the two that killed the other 13. There is something deeply humanistic about that.

 

Oh, sure, I expect the media and the President to leave out Adam. But then I wonder, have they really looked at pictures of Adam Lanza? Because how can you look at pictures of him and imagine that same face, a face that looks overwhelmed by the world around him, wearing all black and battle gear, shoot his way into Sandy Hook Elementary and coldly unload on the staff, teachers, and children. Look up Seung-Hui Cho, the Virginia Tech shooter. Look at his darkly raging face in those photos he sent to NBC News the day he killed 32 people. Look up Eric Harris and Dylan Klebold. Look at the cold smiles. “Evil,” I would say, if I believed in evil. My point is that they made themselves look like killers. There is nothing of that in Lanza’s “deer in the headlights” gaze. It’s like one day he was a shy boy and the next day he was an inhuman killer.

 

There was absolutely nothing that the Courant reporters could find that could explain that transformation.

 

But Nancy Lanza was a straight-up victim, yet she is never included in the eulogies and memorials. Frankly, I expected more from the President of the United States. He’s a father. Is there no part of him that can empathize with Nancy Lanza?

 

Or, on some level, does he blame her, even subconsciously?

 

Let’s not kid ourselves here.

 

What did you ask yourself after Columbine? I tell you what I asked. “How could the parents have not known the boys were building pipe bombs in the garage? Surely, they must have known.” Given that the Harrises and Klebolds lived in big houses in an affluent Denver suburb and I was struggling to pay the bills at the time, I confess that socio-economic jealousy clouded my thinking. “Class warfare,” as Republicans like to call it. In this pre-Jani time, I was still angry over my own perceived slights from my father and others having been raised in a similar upper middle class neighborhood. “Of course they weren’t paying attention,” I said to myself at the time. “They were too busy keeping up with the Joneses, clinging to that upper middle class existence, to notice any pain in their sons.”

 

The arrogance of these statements really bother me now. How quick I was to judge. And I hadn’t even had children yet.

 

What did you say after Virginia Tech? It was a little bit harder to blame the parents because we know that his mother recognized he was “troubled.” But she turned to church. And I will be honest here. For me, there was a little bit of racism in my thinking then. I envisioned diminutive Korean parents, wailing and wringing their hands over their son’s actions, blaming it on “America,” wondering if they never should have left South Korea. I was condescending, thinking there was no way they could have understand mental illness.

 

What I find fascinating now is that I was projecting denial onto Seung-Hui Cho’s parents at exactly the same time I was deep in my own denial about Jani’s continuing behavioral change (she was three when Virginia Tech happened). I was as dismissive of their attempts to help their son as I was of those who suggested there might be something “wrong” with Jani.

 

By Tuscon (Jared Loughner), Aurora (James Holmes), and Newtown, I had seen what psychosis could do. I had seen how it could completely alter the personality of its victim in a matter of seconds, turning sweet into violent. By then, I had experienced my child being a threat to other children.

 

I guess that is what the President hasn’t experienced yet. I remember how protective I was of Jani when she was a baby, almost a bully in my defense of her from innocent but older children who were, like most four or five year olds, not yet in full control of their bodies. I remember glaring at mothers who wouldn’t call their punk five year old away from my precious little angel.

 

Come on, admit it, you parents of neuro-typical kids. How many of you have yelled at a kid that wasn’t your own?

 

And then, suddenly, you are on the other side of it. Other parents glare at you. They yell at your child. You hover over your child in social situations, ready at any second to swoop in AND PROTECT OTHER CHILDREN FROM YOUR CHILD.

 

And you feel those looks, those looks of “What kind of a parent are you? I wouldn’t let my child behave like that.”

 

I feel it because I never look them in the eye. I can’t. It’s not shame. I just can’t bear to see what I must have looked like at one time. So judgmental.

 

I guess President Obama has never had to protect other children from Malia and Sasha. He is lucky.

 

That is why I believe Nancy is left out of the death count. On some level, maybe not even consciously, people, even the President, blame her for what Adam did. On some level, you believe it is her fault. She took him target shooting at a gun range. She exposed him to firearms. She kept the weapons he used to kill the innocent children.

 

She, quite literally, put the guns in his hands.

 

I don’t own any firearms. I never would. I would not trust myself with them, let alone have them in a house with two mentally ill children. I keep the sharp knives high up on top of the kitchen cabinets that only I can reach. We have absolutely no glasses or glass cookware. All of our plates and cups are plastic. Even our butter knives are plastic (the good kind from Ikea). I keep the screwdrivers up high, beyond the reach of Jani and Bodhi. I even keep the fucking cleaning supplies on top of the refrigerator rather than under the sink.

 

So I wanted to understand Nancy Lanza. I wanted to understand the forgotten victim of the Sandy Hook Massacre. It wasn’t that I was looking to blame her. I expected to see clear evidence of mental instability that she willfully ignored, like I had done many years ago.

 

Except that is not what I saw.

 

What I saw shocked me, but not because of any mistakes.

 

What shocked me is that I understood everything she did. Because I have done everything she did.

 

Right from the beginning, she knew Adam was “different.” She brought a toddler Adam to his older brother Ryan’s Cub Scout activities. She would warn people not to touch Adam. No, not the “good touch, bad touch.” Literal touch. Adam hated being touched. He didn’t interact with other kids. He was lost in his own world.

 

Other than the touch thing, I might as well be describing Jani at that age.

 

By the time Adam was in kindergarten, he had an IEP (individualized education plan). IEPs are for kids who have issues that make it difficult to function in general education. Adam was diagnosed with “sensory integration disorder,” a diagnosis not completely accepted within the medical community (then again, neither is child-onset schizophrenia, although that is rapidly changing). I don’t know why he wasn’t diagnosed as autistic then. This was the mid-Nineties and we have to remember that autism wasn’t QUITE as widely known as it would become a decade later. Also, at that time the diagnostic criteria for autism was stricter than it is now. The prevalence of diagnosis today has a lot to with autism being classified as a “spectrum disorder,” eliminating the need for a child to have all the symptoms of classic autism (non-verbal, no eye contact, etc). Since Jani was diagnosed, schizophrenia has also moved toward a “spectrum,” as increasingly psychiatrists feel the determining factor of diagnosis is not the symptoms but how much those symptoms impair functioning. The DSM-V will reflect this new understanding of schizophrenia, eliminating the classic “sub-types” like “paranoid schizophrenia” in favor of a spectrum.

 

When the family moved to Newtown in 1999 and Adam was enrolled in a special ed class at Sandy Hook Elementary, Nancy sent an email to a friend back in New Hampshire, “I can’t write much tonight…I have to work on party invitations.

Ryan’s and Adam’s birthdays are coming up. It makes a very busy month! Ryan is having an “Old Friend” party and a “New Friend” party…Adam is having only a “New Friend” party…but he has 26 new friends!!! “

 

Of course those “26 new friends” were his new classmates at Sandy Hook Elementary.

 

I remember the “old friends” drifting away as Jani’s behavior got more unpredictable. There are still some “old friends” that get invited to Jani’s birthday parties but they are really our “old friends.” Since this academic year is Jani’s first back in a class since she became acutely psychotic in 1st grade (she’s in 5th now), for her 10th birthday we invited her entire class. All seven of them. The “new friends.”

 

But Adam continued to struggle, not with violence. Actually, there is no evidence he displayed ANY violent behavior prior to December 14th, 2012, the day he killed his mother and 26 people at Sandy Hook Elementary. The struggles seem to be with his lack of socialization and dealing with a large class (26 is huge for a special needs class).

 

Nancy considered pulling him out and placing him in a parochial school for the smaller class sizes. Instead, he remained in the Newtown District, but being given work to do at home and only coming to school to work with a teacher after the other children had gone.

 

God, that is familiar. That’s what we did with Jani for four years. Just her, a teacher, and an aide, one to two hours a day, in a classroom after the other kids had gone.

 

It is unclear how long that lasted but Adam was at Sandy Hook in the fifth grade to sign a class t-shirt.

 

Then came junior high.

 

I don’t mind telling you that junior high scares the shit out of me. First, it is a different school district where we live (numerous independent elementary districts and then one massive high school district). Jani’s current school district has for years bent over backwards to create a unique program for Jani. We have already been warned that the high school district will probably “not be able to offer the same level of individual care.” Right now, Jani is a big fish in a small pond, in a class of seven, in a school of 400, in a district of 7,000. In one more year, she will be a small fish in a giant ocean of 21,000 students. I already know that it will be like starting all over again. We will have to fight (again) with a new district to get Jani what she needs.

 

Everything that Jani has known for the last six years will end and she will start over new. And starting over new is traumatic for kids like Jani. It can send them sliding back.

 

It did for Adam. Nancy pulled him and put him into a parochial school but that didn’t work out so it was back to Newtown High School.

 

Nancy would get called to the school several times a week.

 

Yep. Been there, done that. I still feel my blood vessels constricting every time my cell phone rings and I see it is the school district’s main line. Like Susan and I with Jani and Bodhi, Nancy would sometimes go a month or more without a call. And sometimes it was several times a week.

 

We get called for violence or self-harm. Nancy was called because Adam would “shut down,” as it has been described by the former advisor to Newtown High’s technology club. He never completely came out of his shell but he seemed to make some progress, even if it was in fits and starts.

 

Then Nancy pulled him in his sophomore year.

 

We don’t know why. I know that anytime Susan and I have felt that Jani was getting too “overwhelmed,” we’ve pulled her or immediately called another IEP to change her educational environment. We know that stress makes her psychosis worse and every time Jani is doing well and the school starts to (innocently) push her to do more, she regresses. And even though logically I know they are trying to improve her functioning in the world, which requires slow exposure to stress to get used to it and learn how to work through it, our response to take away even the most minor stressors out of fear Jani will fall all the way back to the psychiatric hospital.

 

That combination of fear of regression and not wanting to see your child suffer is powerful. Was it the right thing to do? The former head of the technology club says no, because Adam lost the supports he had at Newtown High. It might have sped up what appeared to be almost total social isolation except for Nancy.

 

But then it becomes a matter of how much suffering are you willing to put your child through? Do you trust the “professionals?”

 

The New Hampshire friend told the Courant reporters, “There’s a lot of counseling help available and not all of it’s good… She was very particular about who she would bring him to….She often didn’t trust … the intentions of some counselors, maybe [thought] they didn’t really … know what they were doing, or they didn’t understand the situation enough to help.”

 

How many times did I write in January First or in my blogs about some professional seeing Jani who I felt didn’t understand psychosis, didn’t understand how to work with Jani, or they just “don’t get it?” I think this comes from the fact that as a parent you live with your child. You see everything. And them some outsider, even one with letters after their name, starts telling you how to parent? But they aren’t there. They don’t live it like you do. And so it becomes very easy to dismiss what they are saying, particularly if they seem fixed on a particular idea that you (the parent) should be doing or you don’t feel they are listening to you. This creates something that all parents of special needs kids deal with, especially those whose “special need” is completely understood: the “bunker mentality.” Everyone not with you, not living the life you live, is a potential enemy for the simple fact that they “don’t get it.” Even while you accept their help, you see them as obstructions, people to be tolerated so you can get some help.

 

It is, I admit, very dehumanizing. You divide the world into those who “understand” (meaning they live it) and those who don’t. You start making up excuses as to why a person can’t possibly understand. Eventually, you even draw distinctions between yourself and other parents of mentally ill kids. Anyone who is different, anyone who would not make the same decisions you would just doesn’t “get it.”

 

Unlike me, Nancy continued to socially interact on her own as Adam grew to maturity. She seems to have really fought against the “bunker mentality” in her own life but not with Adam.

 

We will never know if Nancy’s decision to turn her back on whatever services Newtown High offered was a mistake. Maybe from the perspective of the technology club advisor, they looked like great services but from Nancy’s perspective they didn’t. Maybe Adam regressed again and she blamed the environment of Newtown High. When the technology club advisor, feeling that Adam could be a target of bullying, called Nancy to find out how she gets him to interact, she told him he had been diagnosed with Asperger’s. She also told him that she felt his attempts to reach Adam wouldn’t work.

 

I know that feeling. I know the pessimism. You start to believe. Then you child regresses and you are bitterly disappointed. You can’t be disappointed in your child because you know he or she cannot help it. So your disappointment transfers to those who were trying to help.

 

And then people leave.

 

I can only imagine what she must have felt seeing Adam improve with the efforts of the technology club adviser only to discover he was retiring. I have felt that emotion when a doctor or therapist that Jani loved moves on. In fact, in the fall of 2010 I wrote several bitter blogs directed at a local agency for what I felt was them abandoning Jani (in their case, they were, because they suddenly didn’t feel she was getting any better even though we saw improvement).

 

It shatters what little trust you have left that anyone other than you is going to stand by your child until the end. You lose your faith in humanity. You stand by your child no matter what and you, perhaps unreasonably, expect everyone else to do the same.

 

And so all the groundwork had been laid for Adam to continue to withdraw. Nancy appears to have tried to live two lives, pretending to be happy and upbeat in public while worrying deeply about what would become of Adam.

 

The guns. Why in God’s name would she take him to a gun range?

 

I’ll answer that with another question that I have often read: Why in God’s name did you decide to have a second child when you knew Jani had schizophrenia?

 

Well, first, we didn’t know she had schizophrenia. We knew she had issues, but we assumed she would grow out of them. She wasn’t yet violent. But the main reason was Jani was depressed and withdrawing. She was losing her enjoyment of activities she once loved. It seemed like she felt the world had nothing left to offer her. At five years old.

 

I was desperate to give her a connection to this world. I wanted to see her smile again. I wanted to see the light in her eyes again. Nothing I tried worked. So I agreed to have another child (which Susan had wanted for awhile). In my internal fantasies, I thought a baby sibling would wake up her zest for life. I thought that what she needed was someone to teach as I had taught her everything I knew. I thought she would find joy from guiding her sibling as I had guided her.

 

Yes, I was wrong. But I can completely understand Nancy. She was desperate to bring Adam out of his shell. She was desperate to give him some joy in life. She was desperate to connect with him. And shooting could possibly do that, you can’t tell me you wouldn’t have done the same thing.

 

In the end, it might have been a mistake, but her heart was in the right place. Everything she did, she did for Adam.

 

As it turned out, Adam apparently lost interest in the gun range. ATF reports no record of them going to the range in the six months prior to the massacre.

 

Reports have been tossed around that she was looking into institutionalizing him.

 

Those reports are wrong (as is much of my first blog on the Sandy Hook shooting, “The Cycle Repeated”).

 

There is no evidence she was frightened of Adam. There is no evidence she was seeking to get him inpatient.

 

Perhaps where this confusion comes from is that she was preparing to move.

 

With Adam.

 

Where-ever he was going to go. She was still hoping he would finish college and was looking a different schools where he could study history.

 

It appears she had settled on Washington State. She sold her season passes to the Boston Red Sox (not a minor thing for a life-long Red Sox fan).

 

 

To friends and family, Nancy was again looking for the right educational fit for her now adult son — even if it meant leaving New England, where she had lived her entire life.

 

One family member believes Nancy would not have planned such a move without

Adam behind it.

 

When the family member asked Nancy why, she responded, “You never turn your back on your children,” the family member recounted.

 

She told Tambascio that she planned to continue living with Adam “for a very long time.”

 

“You never turn your back on your children….”

 

Sounds like a hell of a mother to me.

 

And she never did. She was sleeping in the early morning of the 14th when Adam Lanza went down to the guns, bypassing the weapons he would use a few hours later at Sandy Hook Elementary, choosing instead a .22 caliber rifle. She was sleeping as he shot her four times in the head at close range.

 

This was totally at odds with the carnage he would unleash on Sandy Hook Elementary. Four quick head shots. I confess I want to believe that he didn’t want her to suffer. That is my explanation for the four quick “taps” to the head. I have no proof of this but I just can’t bring myself to believe that he wanted her to feel pain. In her emails, she alludes to a life threatening auto-immune illness she had. Perhaps this was as close to an act of love as Adam Lanza could feel. Quick and painless.

 

From then on, we know nothing. Nothing about his motivation. Do I still believe Adam Lanza was psychotic? On that day, yes. I believe a switch flipped in him. Something in his thought process went terribly, terribly wrong because there is no logical reason for what he did, nor is there anything that we know in his history to indicate that he would.

 

And I suppose that is where I come to after four blogs on this topic. In the beginning, I was absolutely convinced that Sandy Hook was a clear case of the “system” failing to identify the warning signs of a psychotic break.

 

Except there weren’t any warning signs. There was no denial on the part of Nancy Lanza. There was no failure on the part of the system. Adam didn’t fall through the cracks.

 

Or if he did, we don’t know how we could have prevented it.

 

At the end, all we have is that something when horribly wrong with Adam Lanza’s thought process. And any hope of being able to understand it, and therefore prevent it from happening again, was destroyed when Adam put a bullet through his brain, ending all thought processes.

 

Adam Lanza’s father and brother? They’re not talking. I wish they would. There is nobody left to blame here, people. We just need to try and understand.

 

Was Adam Lanza under the care of a doctor or psychiatrist? We don’t know. Were Lanza’s “incidents” at school more severe than the technology club teacher knew or let on? We don’t know. Reporters only know what people tell them. Sandy Hook Elementary, which would still have Adam’s records, Newtown High, and any doctors he saw, even a pediatrician, aren’t talking. It’s not a HIPAA issue. HIPAA protection ends with your death. But whatever else there might be in Adam Lanza’s history, we will never know unless those who knew him come forward.

 

I hope they do.

 

Based on what I know, I cannot see where Nancy or the world failed Adam. And that terrifies me. Because Nancy tried everything and was willing to keep trying.

 

Only she never got the chance.

 

If she can fail, any of us can fail. If Adam can become a killer, any of our children can become a killer.

 

So what is the answer?

 

The only thing I know for sure is that Adam was isolated. Self-imposed isolation, but that is what mental illness does.

 

Jani still interacts with the world, even if the things she says are a bit “off.” And that, I think, I hope, will make all the difference.

 

I don’t know that we will ever be able to stop every massacre like Newtown (unless we ban semi-automatic weapons like they have in the UK). After all, Eric Harris and Dylan Klebold went to prom three days before Columbine.

 

But if we focus on socialization over isolation, we might save some lives.

 

And if nothing else, at least we might need more than 30 minutes to tell the story of a life.

 

Link to “Nancy Lanza: In Her Own Words” http://www.pbs.org/wgbh/pages/frontline/social-issues/raising-adam-lanza/nancy-lanza-in-her-own-words/

 

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18 comments on “30 Minute Life (The End is Not as Fun as the Start)

  1. Sandy Hook
    Wonderful blog. You should submit this to the NY Times or some similar newspaper. Your analysis of Adam Lanza and childhood mental illness is the best I’ve read so far, because it relates to your concrete experience with Jani.

  2. I think you did a fantastic job breaking this down. I have felt similar regarding these events. I also understand all the things you were saying about people who don’t and people who won’t understand unless they have a mentally ill child or person in their lives. I really felt connected to this blog post on many levels. Thank you for showing me that I am not alone and there are other people who understand. A lot of the times we feel so isolated from the world because so many people think they can fix things for you with there parenting advice and discipline strategies when they “don’t get it”. Our circle gets smaller and smaller and now it’s mostly just is and a few family members who know what’s going on at home. I will continue the race to get help for my son as I feel time gets shorter and shorter to be able to help him before pueberty. I hope for a doctor that listens and can help. Sorry for rambling…. Thank you for your blog, it helps me.

    From Michael: If Susan and I can help, let us know. My new mschofield@janifoundation.org email is up. As for the circle getting smaller and smaller, I get it but I have also learned that we have to fight that. We have to keep trying to bring people into our circle. Nobody has lost more faith in me but we must keep trying to make them understand.

  3. Socialization and therapy at the same time
    Hi Michael, I am so glad I found your organization, and your blog. I just wanted to mention something that wil help people with schizophrenia both in cognative functioning and social skills. Please look into Cognitive Enhanceent Therapy. I attended a lecture this summer by a Harvard professor who is studying how to rebuild neural pathways in schizophrenia patients, since schizophrenia is a developmental cognitive brain disorder, really…it should be reclassified as a neurological disorder, not mental illness..but that is a different subject…

    Anyway, CET is performed in pairs…which brings in the social interaction aspects. They work on problems on the computer that are designed to rebuild the neural pathways they think are affected by schizophrenia. It has also show to improve insight. Two people with schizophrenia spoke afterwards and told of a change in life from sitting around doing nothing, to having a job and getting married. it has helped them to cope with the positive symptoms, hallucinations and delusions better as well. CET does not affect the postitive symptoms, except that with some other cognitive functions improved, and some that means getting their insight back, managing their treatment overall has improved.

    CET is very new, I wonder if it would help Jani. I don’t think they have worked with kids yet, so maybe that Harvard doc would want to give it a try. I think he would be interesting to talk to anyway because he claims that there is a problem during puberty, when there is a pruning process…some neural pathwys are pruned too much, hence the cognitive deficits and some aren’t pruned enough, hence the hallucinations and delusions. I wonder how he would explain early onset schizophrenia. Is it that the neural pathways growing in the brain just aren’t growing correctly fro the beginning? Then what will happen during puberty? I’ll have to look up the NAMI conference agenda to get his name.

    But here is the website of the CET foundation that is promoting it. http://cetcleveland.org/default.aspx

    Note from Michael: It sounds interesting. But you bring up an excellent reminder of the “forgotten” symptoms of schizophrenia, the “negative” symptoms that are so much harder to treat. And I too favor reclassifying schizophrenia as a neurological disorder. I’ve been talking to some psychiatrist friends about that. It would take neurology accepting that which cannot be “seen” in the same way a tumor can be.

  4. Another wonderful blog, Michael. I just want to say that I am proud of you and Susan for speaking out on tough issues, most people want to side-step these issues due to fear of their image being tarnished. When I look into Adam Lanza’s eyes, I do not see evil, I see somebody who desperately needed help–this does not excuse his actions, however, he was under the throes of something that is invisible and down right scary for people to acknowledge: that mental illness can strike just about anybody–anywhere, anytime–the difference is treatment. I hope we can make a difference, Michael, mental health has too long been ignored, and we have to create real change. I am with you guys, you guys taught me what it means to be brave and to speak out on the injustices of our broken mental health system. For that, I thank you. I hope to see you guys in March or April, I got you guys a gift, it is a film that I bought–it is a family film–and it is so funny, I thought Jani and Bodhi might enjoy it, it is an adventure film. Have a wonderful day, Michael, and please keep on advocating; real change is possible if we speak out on these matters without fear and stigma.

    Note from Michael: Thank you, Ruben. I have learned so much from you as well. I am eager to have you be a part of the Jani Foundation as it gets off the ground. You have much to offer.

  5. Adam Lanza
    Great blog!

    I am a new reader of your blog. I finished reading your book a couple of days ago.
    It was beautiful and heartbreaking!

    Your analysis of Lanza’s actions is very thought provoking! As the mother of a child with Asperger’s, the response of the world to this tragedy made me sick. The ease with which many people used Asperger’s as a cause for his actions was astonishing.

    Lanza was very ill at the time of this tragedy. His psychoses obviously took over his body, and he was not in control of his actions. My hope and prayer is that he and his mother are finally at peace. They certainly deserve it!

    To imagine my child ever slipping that far away scares me. He is ten, with the maturity of a four year old, and the mind of someone at least twice his age. As I type this he is embracing his stuffed dog and watching Mysteries at the Museum. He is discussing the TV show one minute, and the next minute he is telling me about what his dog likes to eat and how old he is. Occasionally he speaks in dog so his stuffed friend does not feel left out.

    Please know that you and your family are in my thoughts and prayers! May you, Susan, Jani, and Bodhi have a blessed and peaceful day!

    Elise

    Note from Michael: Elisa, we have a wonderful private online support group on Facebook and in Yahoo for parents of special needs kids. If you are interested, you can email me at mschofield@janifoundation.org.

  6. I wish they saw the love…
    I too just finished watching the episode last night. I was left angry. There has been so much hatred and misinformation thrown at Adam’s mother. As a mother of two mentally ill children, I feel so much pain for all that she endured. I don’t see a mother that put guns in a killer’s hands. Instead I believe she without a doubt never thought her son was capable of harming others. I know we don’t know many details about her life with Adam, but I can see the love. It’s not easy helping our kids, but she was active in trying to do whatever she could to help him, thus all the school changes. She was doing her best.

    I recall one story told by Nancy’s friend how once when Adam was sick she slept outside his bedroom door so that Adam, who didn’t want her closer, could still feel her love at a distance. Throughout the night Adam would call out to see if his mom was still there, of course she was. This single act tells me everything I need to know about Nancy. She was a loving mom, who did everything in her power to help her son. She was a mom whose love was so big that it was big enough for the two of them. Unlike other moms, she probably didn’t get a lot of hugs or words of love from her son, but that didn’t stop her from loving him best she knew how. I wish people would see that.

    Note from Michael: That is why there were 28 victims that day, not 26. I get your anger. It is sad that a mother who dedicated her life to her son should now be at best forgotten or at worst vilified. She deserves better. We should celebrate the life of Nancy Lanza.

  7. Thank you, Michael, for writing this. As the mom of a son w/ MI, the fact that Nancy was not counted stops me in my tracks. The intricacies of keeping our children alive while advocating for them, protecting them from the system, protecting ourselves from their negative symptoms… the sheer exhaustion of thinking about it, let alone living it. It is infuriating and demoralizing that the mom was not counted.

    You are correct, 28 victims, not 26.

    Anyway, thank you.

  8. IMPORTANT INFORMATION
    My dears It is so hard to be in the place your family is. I saw the special on tv in Venezuela and inmediatly I new that your daugther is having some spiritual problems. She can be here and interact with spirits. With all my respect, I sugest you to look for a priest of any religion and ask him to see her. There is no reason to live like this if you have an option. My best wishes for all of you and my blessing for the kids.

  9. I just finished reading your book and indeed couldn’t put it down. I agree that throughout the time frame of your book you didn’t always think clearly and didn’t always make the right decisions. Sometimes I actually yelled at you. HOWEVER, NO ONE has the right to judge you. There is hardly a person on this planet that can relate to what your family went through and there was no guide book either. You clearly loved your daughter so much and did everything you thought was right. I’m glad you hung in there and that you and your family are doing better. Best wishes!!

  10. Gluten free diet 🙂
    Aloha,
    Just saw a repeat of when you guys were on Oprah.
    I just finished a book called wheat belly, which states they
    did a study long ago, before you had to tell folks
    they were being experimented on where they took
    away the gluten in diets of schizophrenic paitents
    and their symptoms of hallucination and voices
    disappeared, then when gluten was reintroduced
    symptoms came back. The fact that they know this
    Should bother all of us, but was hoping it could help
    your family. Worth a try 🙂

  11. As the mother of three adult children diagnosed as bipolar, one with psychotic episodes, I very much appreciated reading January First. Just finished it today. We have seen so much heartbreak in the children of these family members who have a difficult time staying on a job (if they can work at all) and facing other life issues. The ups and downs are so difficult to live with and understand. Our son tried to commit suicide the day before Mother’s Day last year. One of our daughters have psychotic episodes every couple of years requiring hospitalization.

    It was 18 years ago when we first were brought into this world, unknowing and totally uninformed. I understand others not understanding mental illness. We certainly didn’t then and have had a long, hard road to travel in gaining the information with which to assist our children. It is good to have as much information available as possible so that perhaps a few more people may gain some understanding. It is impossible, I’m sure, to really “get it” unless you live with it, but every little bit will help.

    Thank you Michael and Jani for sharing your experience to help the rest of us along the way.

  12. Thank you for your outstanding compassion. It is truly inspiring. As a general education teacher who has mainstreamed many “special Ed” students I have seen the dismissive attitude of many professionals and para professionals. So many times I have heard “if that was my child…” Thank you for shedding light on what it’s really like to be that parent. How easy it is to judge! We currently have a schizophrenic 5 th grader at our site and I have heard the instructional aides refer to her as demonic and scary. Unfortunately, low pay and lack of training is the norm resulting in misunderstanding and zero compassion. While I am well aware that these students are not the easiest to work with we desperately need more training and widespread education ( for the educators) as it seems more and more of these children are coming into our classroom. Thank you for being a strong advocate for your child and all children with mental( neurological ) health needs. This post will definitely be on our staff room table tomorrow.

    Note from Michael: Thank you. The Jani Foundation plans to provide free training for educators and para educators in working with kids with severe mental illness. I would love to hear your ideas for such a program. Could you email me at mschofield@janifoundation.org?

  13. Great post. I never thought about how we seemed to “count” the columbine shooters more than we count adam’s mother. So sad.

    But, just in case, HIPPA protection definitely does not end with a patient’s death. Only people with legal authority over a deceased person’s estate can access those records.

    Note from Michael: Interesting. HiPPa has gone WAY WAY too far beyond what it was intended to do. We can’t find anything out because of it and the fear of coming forward.

  14. I, like many others, am so impressed with your commitment to your children!

    Please, please , please consider looking into the physical aspect of both of your children’s brains and bodies. Here is some recommended reading geared toward more mild mental health issues, but helpful nonetheless:

    The Ultramind Solution by Dr.Mark Hymen

    The Mood Cure by Julia Ross

    GAPS by Natasha Campbell

    There is likely to be a functional cause for these mental disturbances. Even if you can not fix that, it is possible you can bypass it by supplementing with a bi-product that your brain should produce and doesn’t. If you do some experimenting with amino acids and neuro transmitters you might find a nourishing way to help your children and address the root cause of the mental illness instead of just the symptoms. If you do not give your body everything it needs to function properly, the result can be devastating. Over time it has become more and more unlikely that we can get what we need out of the food that is provided for us and people with mental or physical imbalances can greatly benefit from supplementing their diet with high quality vitamins,minerals and fats. It is also important to do elimination diets and check for possible food allergies. Stressed digestion does not allow you to absorb what you do eat properly, therefore hindering your capability to get everything your brain needs to function properly. The neurons in your brain cannot communicate effectively without the proper nutrients to fuel them.

    It could take years of experimenting to find out what works best for you and your children, but I implore you to address the physical side of your mental illnesses.

    If you want any help finding more information on this topic, feel free to contact me. I have have found much relief myself from bipolar disorder by addressing my digestion, lifestyle, food allergies(I am now gluten and mostly dairy free), and experimenting with supplements.

    Note from Michael: Thank you, but like you said “milder mental illness” is probably the key phrase. I don’t put much stock in diet as a cause of psychosis and I don’t believe in torturing kids whose lives are hard enough by radically restricting their diet. But that is just me.

  15. Diet isn’t necessarily the cause(unless you were born with a food intolerance and eating it causes malabsorption in your digestion- if you don’t absorb certain nutrients effectively you absolutely will not function effectively. Every cell in your body is dependent on receiving the right set of supplies to function. )

    Even if diet isn’t the cause of psychosis, a therapeutic diet and supplementation can improve psychosis.

  16. Hi Michael-

    How can I get involved in the Jani Foundation? I’m 21 years old and have moderate-severe schizophrenia. I would love to help out in any way I can.

    Note from Michael: You can go to http://www.janifoundation.org and sign up. Honestly, we are not sure yet what we will need from volunteers (we are still getting set up) but we certainly appreciate the offer to help and we will be in touch.

  17. Thankyou!
    I’ve read your book, im a student and i’m doing a research presentation on schizophrenia is there anyway I could ask you some questions about your book?? It would help me out a lot! thanks-Jenna