Month: October 2013

Saint Peter Won’t Call My Name

It feels like 2008 all over again.


2008 doesn’t have a specific name in our family, mostly because we don’t like to think about it. It could be the year of violence, the year of darkness, the year of confusion, the year of my apathy. If you have read January First, the seeds of what I do in the climax of the book, which occurs in June 2009, actually began in early 2008.


It was a bad year.


It was also the first full year of Bodhi’s life.


It was the sixth year of Jani’s life and the onset of the worst of her symptoms, or what we would later realize were her symptoms.


It was the year of Jani’s first and second hospitalizations, with the first and second coming four days apart.


2013 is the sixth full year of Bodhi’s life and has been the year of his first, second, third, fourth, and fifth hospitalizations, with three through five ranging in distance from a few hours to six days of each other.


What it feels like right now is the period of April through June of 2008. Jani had just come through two hospitalizations and was not significantly better. There was no agreement about her diagnosis. There were symptoms, but no real consensus on what was causing them.


Just like Bodhi today.


In April of 2008 Jani was released from Loma Linda Behavioral Health Center, her medication largely unchanged, and the direction to us to simply, in essence, “deal with it.”


How I “dealt” with it then was to give no quarter. Jani just needed a “firmer hand,” a father, not a friend (an assessment some readers of January First still appear to have). In other words, she was a “brat” then, as far as Loma Linda was concerned. So for the slightest infraction, I would drag her into her room for a “timeout” and lock the door.


The signs of what Jani actually had were on the wall. Literally. She wrote the names of her “imaginary friends” on the walls of her room. We moved out of that apartment in May 2009, moving into two separate apartments to keep both children with us, but I know those names are still on that wall. I was unable to scrub them off so I know they are still there, buried under subsequent layers of paint. Whoever sleeps in that room now has no idea that behind those walls are the rantings of psychosis.


Now, I am dragging (figuratively, because that is what it feels like) Bodhi into his room for time outs. Of course, this time there is no lock and Bodhi is not left alone. Susan or myself, and usually both of us, are in there with him.


We do it because he is throwing things. He cannot stop. He cannot control his own body. He will open the door to the balcony before I can cross the room to stop him, go out and throw one of his cars over the side onto the street below. Then he will cry that he threw it and want it back. I will bring him back in, while he is screaming that he wants his car back, and lock the door. Not that that stops him. And no, child safety locks don’t work. Let me tell you something about child safety locks. They only work for kids who aren’t sufficiently motivated and therefore don’t need them in the first place. Sheer strength and willpower will defeat any child safety lock.


But I digress.


I try to get outside to get his car before it is crushed by a real car. Sometimes, I get lucky. Tonight I didn’t. His toy van from the movie Cars looked like it had been squeezed between oncoming freight trains. I threw it away before he could see it. He would be devastated.


Jani did the same thing in 2008, destroying the things she loved and then being devastated when she succeeded.


The idea behind getting him into his room is to get him into a smaller space where we can attempt to control his body. Only in there, with fewer distractions, can we try get him out of the state that he has entered.


By the way, we have no idea what sets him off, just like we had no idea what set Jani off in 2008. It is like what Bodhi (or Jani in 2008) wants and what his body will do are two different things. Like there is, in those moments, someone else pulling the strings, driving the muscles.


Once it starts, there is no stopping it. Commands do nothing. Positive reinforcement. Nothing. We try to get him to count to one hundred.


“One, two, three, four…” Bodhi races through the numbers, slurring them, “five, six, seven, eight, nine, AAAHHHHHHHHHHH!” A primal scream and he throws his head back. Luckily, he is on his bed. Or primal scream and he tries to bite his hands. We keep holding him and continue to count through it. Bodhi rejoins the count. “Forty, forty-one, forty-two, forty-three, forty-four, AAAAAHHHHHH!” I am holding his wrists so he can’t get his hands to his mouth so he bites his shoulder. If we are lucky, he mostly gets the sleeves of his shirt. I gently pull the arm being bitten in one direction while gently pulling his other arm in the opposite direction, which forces his head away from his shoulders. Then he bites my hand. Hard.


Here is a lesson should you ever be bitten by anything. Don’t pull. I know your instinct will be to recoil but if you do that only increases the damage. Jaws are pretty strong. The best thing to do is to wait until whatever that is biting you lets go. This prevents tearing of the flesh.


Of course, this means you have to fight your instincts and take the pain.


Do I scream?


You bet.


Human teeth biting down at full pressure hurt like hell. Of course I scream.


However, once he has successfully bitten down on flesh, either his own or someone else, the biting seems to abate. It is like the compulsion has been relieved. The itch has been scratched.


The sad thing, though, is feeling physical pain from being bitten by Bodhi is the only time I feel fully alive.


Just like in 2008 when Jani used to hit or kick me.


The sharp sensation, the stinging wound after, reminds me that blood still rushes through my veins, that my heart still beats.


The only thing that comes close to that is during a Jani Foundation social event when I see mentally ill kids, many with the kind of weak diagnosis Bodhi has, playing together and having a blast. That’s more healthy, I know.


What makes this like 2008 is that the rest of the time, I feel numb. Dead inside. This is because my entire life is survival again. Get Bodhi through the day to the night and then do it all over again and all over again and all over again until he becomes so bad he has to go back to the hospital.


That is what I felt in 2008. Survive. Get Jani to the end of the day. A few hours down. Then do it all over again. And I believed it would be that way forever.


And when you think that is going to be your life for the foreseeable future, you start to die inside. You stop talking to people because you are too damn tired to explain everything you are going through. You stop sharing your feelings because you have no feelings to share. Life becomes all about functioning. What do you need to function, not just for you but for everybody you are responsible for? What does it take to get from one moment to next, hour to hour? That is as far as you can let yourself think ahead. You have to be safe to plan for the future. Maslow’s Hierarchy of Basic Needs stuff. The future has no meaning because you can only think about surviving.

The psychological toll of that is great. Dullness is my most common emotion. Dullness. The gray depression, not the black depression.


Eventually, you have no idea what would make you happy anymore.


Of course, this is my second time through this so I know more than I did last time. Last time I was in this place, I went looking outside my family for happiness. This time, I already know the grass isn’t any greener on the other side.


Not that I would want to go. I don’t have the energy to climb the fence anyway.


But that’s not really why I don’t want to go. I don’t want to go because as much as I hate this period, the period between the beginning of treatment and the final diagnosis, the period of uncertainty, of not allowing myself to fully believe that Bodhi is experiencing exactly what his older sister went through, there is a difference between 2008 and 2013.


Part of it is Bodhi still doesn’t really talk. His is not conversational so they can’t pin the “brat” tag on him like they did with Jani. This time, he has an older sibling with a severe mental illness. He’s had the early intervention of therapists and behaviorists that Jani never got because she never got an autism diagnosis. He has only ever been hospitalized at UCLA, with doctors and nurses who already knew him because they knew Jani and knew our family, unlike Jani who had to suffer through BHC Alhambra and Loma Linda.


He has an older sister who taught his parents a lot. She taught us how to fight for her, how to advocate for her. In 2008, I was acting against my better instincts, doing what others told me to do. Not this time. This time I am trusting my wife, who is the physical embodiment of my conscious. Or I am trying to.


Yes, Susan is my conscious.


Why do you think I portray her the way I do in the book? Why do you think I got so angry with her?


Don’t you ever get angry at the part of yourself that tells you the truth even though you don’t want to hear it?


Yes, Bodhi, and us, are on the same journey again. But at least this time we know the landmarks.


And what gets me out of the gray depression this time is that I know there will be a future.


Because I have already been there.


I already know what will happen. I already know this set of hospitalizations is just the beginning for Bodhi, that more will come. I already know that the doctors will beat around the bush on a diagnosis until a true crisis happens. Yes, that scares the shit out of me. But to cross that final threshold, there has to be a trigger, the end of the end, or at the beginning of the end so that the end can come. It is the starting of the process of hitting the rock bottom. From December 2007, when I was forced to accept that there was something wrong with Jani, to January 2009, when Jani ran out of her first grade classroom and tried to throw herself through doors and windows, we were falling, as a family, falling, with no bottom in sight. In January 2009, the bottom came into sight. It would take another three months to actually see the bottom and to get out it? That’s a whole other book.


So that is what I am waiting for now.


The bottom to come into sight. I have to have faith that the bottom will not kill Bodhi. I don’t think so because he is young and he got help even earlier and younger than Jani did. He started treatment earlier. He is already in special ed. He is already doing home hospital with the same teacher Jani had. He has supports now she would not get for years.


Of course, this may mean that it will take longer for Bodhi to hit the bottom.


But I still feel it is out there and will be until Bodhi is on the right medications. What is on right now is just slowing the fall, not stopping it.


But we did it once, we can do it again. We turned the tide once. I am not telling you this for your benefit. I’m saying it for me. Remember, I am not really talking to people right now. I have pulled back from my friends. I am withdrawn. This whole blog is my peptalk to me. I know that giving up is not an option. I brought these children into the world. Their happiness is ultimately my responsibility. But the apathy. That is what I have to fight against. The gray depression.


The bottom is coming. I don’t know when we will hit it but I know it is down there somewhere.


I look forward to hitting it.


Because then we can start coming up.


And life can begin again.


Post-script: The Jani Foundation still has a responsibility to provide free social events for the ED “emotionally disturbed” children of the Santa Clarita Valley. We have done three events so far and next Wednesday is our biggest event this year, our “Halloween Rocks!” costume/dance party with live DJ at the Sunset Pointe Room between the Residence and Fairfield Inns in Valencia. The Jani Foundation desperately needs your help to continue to offer these events. We are offering Jani Foundation “Socialization over Isolation” t-shirts for sale here on eBay. We have only a limited number made and will not be making more. Get yours today and the cost, minus postage, goes to pay for our social events.

Also, the Holiday Season is coming up. Please consider the Jani Foundation for your Holiday Giving. Thank you.

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Safe and Sound (All Made With Lead)

I am writing this now because whenever I get back from where I am going, I don’t know that I will be able to.


There are a long line of things that when I was a younger man, I never thought would happen or never thought I would do. I had a very strong idea about who I was when I was ages 18-28. I swore I would never be a man who would shake his child, like I did once to Jani when she was just an infant. I’m not going to bother with the extenuating circumstances. I never thought I would be the man who would spank his child in anger, like I did to Jani when she was constantly violent and I was at the end my rope. Sorry. Extenuating circumstance. I can’t justify that. I never thought I would be the man who hit his wife in the heat of stress and anger. I despised those men and I became one of them. I did get help. Medication and therapy. Extenuating circumstances again, I know. This is not the first time I have admitted publicly to this but it is still hard.


I never thought my first child would go into a psychiatric facility. I never thought I would be accused (and later cleared) of sexual abuse. I never thought my daughter would be diagnosed with child onset schizophrenia. I never thought there would be anything wrong with Bodhi. I never thought he would have autism. I never thought I would have to hospitalize him. I never thought I would have to put my children on drugs that scare the shit out of me just to keep them safe.


Today, another event has come that I never thought I would agree to or would happen.


Bodhi is in the UCLA ER in four point restraints.

Photo: Bodhi


I never believed in restraints of the non-human kind. I have always believed it was better for me to get hurt, to take whatever physical pain I had to, that tie either of my children down.


But it has been taken out of my hands now.


Just like with Jani, it was Susan who had the courage to do what I could not do.


If you couldn’t guess from the last blog, “Turn and Burn,” UCLA released Bodhi last week. Sure, he was doing great on 10mg per day of Abilify in the hospital unit, no PRNs. But the hospital unit is not the real world. Kids generally do better there because all the stressors of life are gone. It is insulated. We were willing to take him home but we wanted to make sure he could function off the unit. We wanted them to try to take him to school there (UCLA has it’s own school, just outside the unit) as well as even just onto the “deck,” an area outside on the fourth floor that is protected by ten foot bars. The reason we wanted this is that Bodhi was terrified of the deck (and no, you can’t see the drop unless you go the very edge). He never made it past the door of an area the roughly the size of a basketball court. Jani always loved it out there, playing catch with the other kids. But Bodhi was terrified and if he was going to come home, if the Abilify really worked like they swear it does for him, he should have been able to go. School was not in session when he was discharged. They told us he did go to the deck. So we took him home.


But based on what has happened since, I am pretty sure they got him to the deck and that was it. Straight back inside. For the month he was there, they couldn’t even get him to go to the door. This time, I think they got him to go to the door and decided that was enough “proof” that he could function in the real world and they let him go.


Not that I blame them. Blue Shield is breathing down their necks, wanting a release, and there are only six beds for kids. There just isn’t enough inpatient beds in full medical facilities.


Bodhi was exactly the same at home. He cannot function. He cannot function because the entire world terrifies him. Every moment of the day he is fighting this internal battle between wanting to go out and wanting to stay home. When he is home, he wants to go out. When he is out, he wants to go home. “Want” doesn’t quite describe it. He bites himself and thrashes around. He drops to his knees (which are badly bruised) and his back.


We had another IEP to set up “home hospital school” where he would go for 30 minutes with a teacher after school. He couldn’t even do five minutes. Even with me, Susan, Jani, the teacher (who was Jani’s ED teacher when she was younger), and three aides. The teacher wasn’t pushing him. She was getting out shapes, which he loves. But he was too terrified to do even that. He wants to be held by either Susan or myself 24 hours a day.


Our regular psychiatrist has been out of town for two weeks on vacation. Susan took Bodhi back to UCLA yesterday. He got THREE IM (intramuscular) injections of thorazine by the ER staff. But they couldn’t admit him.


No beds were available.


Our options were to either have him transported to another facility (which we refuse-thanks to Jani we know what the other “facilities” are like) or take him home. His heart rate is at 173 bpm at rest, which the ER doctor dismissed as being due to the thorazine and Benadryl.


Yes, we had the option that most parents of mentally ill kids and adult mentally ill face: stay in the ER until a bed opens up. The ER, along with prisons, is American’s other holding tank for the mentally ill. But I didn’t want to put Bodhi through any more stress. He had been through enough. I hoped he could come home and figured he would be knocked out from all the drugs he was given.


No. He kept amping up at home, constantly throwing himself around and throwing objects. Dr. DeAntonio insisted that the Abilify needs time to work. It’s been three weeks but okay. We gave it to him.


Abilify does not calm him down. It makes him happy… for a while. Then he goes back into the self harm. Around ten last night, he bit his thumb and tore the flesh. I will post a picture.

Photo: He bit his hand again! The ABILIFY is NOT working!!!!!!!


He also bit his thigh, drawing blood. We used PRNS of Thorazine, Benadryl, melatonin. Nothing worked. I have never seen anyone, let alone a child, resist this level of medication. I had to hold his arms while Susan held his head. He kept twisting like he does and I let go because if I don’t his arms will be pulled from their sockets. He doesn’t feel any pain in this state. Nothing.


Susan took him back to UCLA this morning. As of right now, he is still in the ER, in restraints, while the ER doctor fights with the psych team to get him admitted. The ER doctor actually physically went to see the psych team and said they rolled their eyes at him. He got angry, telling them how severe this situation is. Bodhi’s BPM remains high and now his blood pressure is falling. Not dangerous yet but much lower. He is on an IV drip of thorazine/Benadryl.


We will remain in the ER until he is admitted.  If a bed does not come available today, the next potential is Monday, unless UCLA considers Columbus Day a holiday. Maybe Tuesday.  Yesterday, there were eight kids in the ER with psych issues and it was either take another hospital or leave. As soon as I am done with this, I am going to UCLA to relieve Susan. I am prepared to stay overnight until Susan comes back the next afternoon to relieve me. And we will go on like that until they admit him.


The selfish part of me, the scared part of me, hopes those other parents agreed to transport to other facilities, even though in my normal state I would never recommend any psych unit in Southern California other than UCLA. But the other part of me knows what happens to kids in places like BHC Alhambra and Del Amo. They are hell-hole holding tanks with overworked and underpaid staff. You will have no idea what is happening to your child. If you ask questions or get upset at the lack of care, they just ban you from the unit. UCLA at least involves you and would never ban a parent from the unit.


And then there is the darkest part of me. The part that is afraid that Bodhi will die. The part of me that was there the day at the end of January First that I speeded home and overdosed on my anti-depressants, Jani with me, is back. The part that wants out. The part that wants to die because I am not strong enough.


I won’t, of course. My fucking sense of responsibility will not let me abandon these children. I brought them into the world. I have to keep fighting for them.


I fight against that darkness, amplified by a friend’s recent loss of his boy, Henry, for the same self-injurious behavior (he smashed his head open on concrete and was declared brain dead), by reminding myself how far Jani has come. Jani can do almost anything now. Two days ago, she was in the class with Bodhi, trying to help him, trying to reassure him. In the book, I express my fear that she would never be able to be a big sister to him. I have never been happier to be wrong in my life.


Jani, and so many other kids who fight their own minds every day, they are the ones who give me the strength. Briana, Brian, Jessica, Katelin, Andrew, Alysha, Mary (sweet Mary, who has been victimized like no other but still fights on), Kastle. Jacob, Jason, Chris, Nigel, and Adam, just to name a few. It is you children, and the children of the SDC 5 program, who have taught me what it means to persevere when your own mind betrays you and the world doesn’t get it. The world thinks you are bad kids but I know better. I know who you really are. I have talked you to all about Rush and Pink Floyd, taking care of reptiles, space, rockets, airplanes, the stock market (thanks, Jason!) Pokemon, Minecraft, California. You are the best fucking kids in the world and don’t you ever let anyone tell you different.


And I have to do this for Will and Harry. I cannot let their deaths be in vain. These boys gave their lives so we, us, society, could learn. We need to heed the lesson that childhood mental ill and autism can kill.


So now I have to go face my baby boy in restraints.


I am going to leave you with a few songs that are Bodhi’s favorites.


  1. Capital Cities “Safe and Sound.”  Bodhi loves it when I lift him above my head during the lyric, “I can lift you up…” Thank you, Ryan and Sebu. I think I love this song also because it’s all I want.
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  2. Phoenix “1901.”  Bodhi likes to be held during this song do and laughs when I tip him back upside down during the “Fallin,’ fallin,’ fallin,’” chorus. Thank you, Thomas, Deck, Christian, and Laurent.embedded by Embedded Video

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  3. Matt & Kim “Let’s Go.” For some reason, this is a very calming song for Bodhi. Thank you, Matt and Kim.embedded by Embedded Video

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Turn and Burn

An interesting letter came home in Jani’s backpack the other day, addressed to the parents of the SDC 5 Program (the Newhall School District’s code number for the special day classes that constitute the “ED” or “emotionally disturbed” K-6 student population in the Santa Clarita Valley, the same student population that the Jani Foundation provides free social events for). It was from two Marriage and Family Therapist Interns (MFTI), introducing themselves to the parents of the SDC 5, offering a non-specific “variety of complimentary speaking engagements and educational materials.” They say that although they spend many hours in private practice, they would also like to give back to the community through “our” local schools.



In reaching out to the Newhall School District office, we have been asked to focus our energy towards the SDC 5 Program at Old Orchard Elementary. We understand that your families (notice the shift from “our” public schools above to “your” families in this sentence) have a multitude of needs and we are very excited about the opportunity to help out in the best way we can. Our services focus on mental health and wellness for families with students in the SDC 5 Program, and are offered as an adjunct to existing mental health services within Old Orchard Elementary. Attached to this letter is a list of topics of interest. We are asking families to mark off 5-7 topics that would be of most interest to learn more about…


First, let me say I think these individuals’ hearts are in the right place. I am in no way disparaging their offer. ED students need all the attention they can get. Since they claim to specialized in “mental health and wellness” (I hate that term but will get to that later), I eagerly flipped the page to see what the topics would be. They are as follows:


  1. Behavior Management without punishment
  2. Relations (not sure what they mean by that)
  3. Anger
  4. Anxiety
  5. Fears
  6. Belonging-Rejection
  7. Balancing your needs as a parents vs your child’s needs
  8. Strengthening your Marriage
  9. Strengthening Boundaries

10. Siblings

11. Managing Stress

12. Procrastination

13. Divorce

14. Impulse Control

15. Loss and Grieving

16. Feelings of Unfairness

17. Low Self Esteem

18. Peer Pressure

19. Relationship with Parents

20. Bullying

21. Depression

22. Transitions

23. Self Downing (not sure what that means, either. Being down on yourself, maybe?)

24. Guilt

25. Performance and Competition

26. Feelings of Unfairness (again. I assume that was a mistake).


With all due respect to these future MFTs, this list of issues aren’t mental illness, with the exception of “impulse control” and “depression.”


That’s just life. Normal “sometimes things can be a little shitty” life. Things that happen to all of us.


Is that what MFTs are being trained that mental illness is? Emotional problems caused by the general environmental stress that comes from being human?


Maybe not. After all, they didn’t say “mental illness.” And I don’t blame them. Those words have stigma and not every family in SDC 5 has accepted that their child has a mental illness so if you are trying to reach them, maybe those words aren’t good ones to use. “Mental health and wellness” is more palatable if you are in denial. As I said before, though, I hate the term “mental health” and/or “mental health and wellness.” First of all, it makes mental illness sound like a Kaiser Permanente commercial: “We believe in fruits, vegetables, taking the stairs, and mental health and wellness. Be well and thrive.” But the main reason I hate the term is that it, perhaps inadvertently, minimizes mental illness. Instead of being the potentially life threatening and certainly life-destroying disease that it is, “mental health” makes it sound as harmless as being a few pounds overweight.


I realize that this is part of a larger turn in American medicine to “preventative medicine,” essentially trying to prevent later illness by encouraging healthy “habits” but they don’t say this crap about cancer. No, it’s “StandUp2Cancer” plastered behind the batters during the Major League playoffs. Cancer is apparently something that you fight while mental illness is about making healthy choices, having a salad for lunch instead of schizophrenia.


The upshot is that “mental health” ignores the worst cases of mental illness, the worst of the worst, those who have little to no ability to function so long as their mental illness is untreated.


But treatment, you see, is the crux of the issue. “Mental health” has been pushed by the “consumer movement” for twenty plus years now and has become the primary influence on public policy regarding mental illness. Community based, non-medical, options that do nothing for those most likely to take a bullet from a cop because, while in a psychotic state, the words, “Police! Stop the car!” mean nothing.


Do you “consumer movement,” encourage the mentally ill to resist medication and teach them to how to fight involuntary holds, get them out of the hospital and back on the street, making them think homelessness or jail is a viable “life choice” people think the politicians listen to you because you are right? Because your methods are actually good for those with mental illness? Because you really help people?


No. They don’t care whether your methods are sound or not (except for the NIMH-they are starting to push back).


They listen to you because your methods fit are an inexpensive “fix.” Your agenda fits quite nicely into their need to save taxpayer money.


Same with the insurance companies. They would rather pay for ABA over inpatient treatment because the ABA is going to be done by someone making nine bucks an hour over a full medical staff that costs about three grand a day, and that is just for room and board.


It’s all about the money in America. This is why I find the fears of the functionally mentally ill that they will be locked up due to hysteria over mental illness and violence somewhat funny. Who is going to pay to lock you up? Seriously. It would cost a fortune to keep you strapped down and doped up on Thorazine. It’s much, much, much cheaper just to send you to prison when your lack of impulse control because you are off your meds causes you to commit a crime.  We don’t lock up the mentally ill in America until they commit a crime. Prisons are the new American psychiatric institutions.


That, and schools.


I can’t speak for the rest of the world but America has made so many cuts since the early 1970s that there is no chronic mental health system left here now. Most states, like California, have no state psychiatric hospitals left. The few states that do are badly underfunded and facing the budgetary axe.


Because mental illness is the most expensive chronic illness that exists. With every other illness, either you will get better or you will die. Either way, the insurance companies and Medicaid get off the hook. But not with mental illness. They know they will paying for treatment for the rest of your life, which, with the proper treatment can be a long and happy one. Except that long and happy lives for the mentally ill are massively expensive to maintain, largely because they require fairly frequent inpatient hospitalizations.


So the solution is to limit the number of inpatient beds and, should you be lucky enough to get your child in, limit the time as much as possible. I call this “turn and burn” psychiatry, after the business model of low-fare airlines like Southwest, for whom the key to profitability is to keep the planes in the air as much as possible. Hence, when a Southwest flight arrives, the ground crew “turn and burn” to get it unloaded and reloaded and out again in less than 20 minutes, allowing every Southwest aircraft to fly 12-15 legs per day. The phrase itself has two origins: one coming from the restaurant industry,  referencing the need to get a large table of people who aren’t spending any money out; and from military fighter pilots, who after expending all their ordinance, “turn” for home and “burn,” lighting the afterburner. Both are appropriate to the treatment of severe mental illness in inpatient hospitals, except they call it “stabilization.” Take the patient only if the patient meets strict criteria for admission (is an immediate threat to themselves or others and even then only if a bed is available), start a medication regimen, and at the first sign of reduction of acute symptoms, release back into outpatient care before insurance or Medicaid pulls the plug on authorizing payment for further inpatient days.


It would be like getting someone who is having a heart attack, getting them out of immediate cardiac arrest, and sending them back out the door to monitored in the community by organizations and individuals who don’t have an EKG machine and wouldn’t know an irregular heartbeat from a hole in the ground.


That is how the mentally ill are treated in America, if they are treated at all.


The first social worker we ever had at UCLA, who is now retired, told us that in 1980 the average inpatient stay at UCLA was one year.




Now the average is 3-5 days, with UCLA being toward the high end of that average.


The “decision” to put either Jani or Bodhi inpatient is never easy, even when Bodhi is hurting himself. Hell, he drove his head into the wall so powerfully once that Susan called 911. They came, took one look at Bodhi, who was still conscious, and then left. The point is that as a parent of a severely mentally ill child, you stall and stall and stall before heading out to the ER while you rush to the doctor at the first sign of a fever. You seek medical attention immediately for the normal aches, pains, and snivels of childhood yet have an internal battle with yourself when your child is trying to bite his own fingers off or, in the case of another girl I know with child onset schizophrenia, attempting to gouge her eye out with a pencil.


Let me explain. It’s not that you are stupid. Quite the opposite. You know how the “system” works and that is why you are stalling. First, you know you are headed for the ER, assuming you actually live in an area that has an ER and a psych ward in the same building like UCLA. And it ain’t like they will rush your child up to the unit. No. You are looking at 12 hours in a tiny room, if you are lucky. If you are not, it will be the hallway or even longer (I’ve known parents who rolled over a full 24 hour period in an ER). And it will just be you trying to keep your child safe in a place with hard floors and walls. It’s not like the nurses or the security guards are going to help you. It is just going to be you, trying to save your child’s life, for hours and hours and hours. And this is before you even get a psych consult. Sometimes, in good hospitals like UCLA, the ER doctor comes in and gives your child whatever cursory examination your child will allow. Your child is physically fine. They never seem to make a big deal out of the bruises and scratches on them. But, I suppose, internally they are fine. Heart and respiration is normal. Nothing to get excited about. And then the ER doc leaves and usually never returns (to their credit, at UCLA, whenever there is a shift change the new ER doctor always checks in).


While you are trying to keep your child from killing themselves, you are also wondering, in the back of your mind, whether your child will even get admitted. Psychosis goes in and out like the tide and your child might just happen to be calm right around the time the on call psychiatrist shows up. Not to mention you are so exhausted by this time you are barely articulate. Honestly, by that point you just want it to end. Either admit my child or let us go home. Even if your child is still in the grip of psychosis, will there be a bed available?


In America, there is a massive shortage of inpatient psychiatric beds. It is bad for adults and even worse for children as many psych units won’t accept anybody under the age of 12. If the child needs to be hospitalized, the psych doctor is supposed to order a hold until a bed opens up but this often doesn’t happen. In fact, there are even organizations pushing states to do away with the mandatory ER psych hold, even though this hold can be the last thing between a person in a psychotic state and something very, very bad happening.


And then there is this: even though your child is banging his head and biting himself, do you really want to put him or her through 12 plus hours in a tiny room in an ER? Especially knowing that he or she might not get admitted? Especially knowing that even if he or she is admitted, he or she will be released back home even though they still have no ability to function in the real world (because they tend to do better in an inpatient setting where there is medical staff that rotate in and out every 8-12 hours?) The hospital, even the best ones like UCLA, do not and cannot match the stressors of the real world. So your son or daughter does a little bit better and before you can even analyze if the medication might be working you get the call that your child is being released that afternoon.


If your child was having what paramedics call a “major medical issue” (ie, heart problems, appendix, whatever), you would never delay. You would never have to decide whether or not to try and get your child inpatient. You would just do it. Yet even though you know your child is in crisis and needs inpatient, you will go back and forth with yourself, trying to decide if you really need to take them this time or whether you think you can tough it out and get them trough it.


Is it really necessary? This is the question you will ask yourself over and over again when you have a mentally ill child. And you always know the answer. You wouldn’t be asking if you didn’t. You are asking because you know what the system will put you and your child through. And it they will probably come out no better than they went in, no more functional, no more safe.


The MFTis talk about a “multitude of needs,” but there is really only one. Can you help me when my child is psychotic and harming themselves or others? Can you help me get them inpatient?


I’m sorry, no.


That’s not on the list.