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Hanging By a Moment (There is Nothing Else)

Since Jani was first hospitalized at UCLA’s Resnick Neuropsychiatric Hospital in January of 2009, and once the diagnosis of child-onset schizophrenia was made in March 2009, there have been three options. These are essentially the same two options presented to any parents of a child with a psychotic illness (assuming that they live in an area where these two options are available).

 

The first is a residential treatment center. Jani needed what is called a “Level 14” facility. A level 14 is a locked facility where a child is monitored and supervised (theoretically) 24 hours a day. UCLA and all other acute inpatient hospitals are level 14, not just because the facility is locked but because the child can have, if necessary, a 1:1 at all times. Level 12 facilities do not provide one to one engagement and supervision. All use a behavior modification system, where bad “behavior” is punished and good “behavior” is rewarded. They claim to teach behavior cognition, but even if they do, such a system does not work for children suffering from psychosis because psychosis is a thought disorder, not an inability to regulate emotions. The primary symptom of psychosis is irrational thinking, when the brain gets stuck in a “though loop,” a paranoid or destructive thought that repeats over and over like a record stuck in a groove. Since behavior modification asks the patient to “think” about the consequences of his/her actions, and the psychotic child cannot think rationally, the child ends up being punished over and over again for things they cannot control. You cannot “punish” a child out of psychosis, even though that is often our natural instinct. Psychotic children know the difference between right and wrong. That isn’t their problem. Their problem is that when psychosis comes it the “consequences” established by us, their caretakers, pale in comparison to the consequences of not following through on the thought compulsion. Whatever is in their mind is worse than any consequence we could inflict.

 

Residential treatment centers were designed to deal with external triggers for “bad behavior,” be it drugs and alcohol (still what most RTCs focus on) or a family environment that for whatever reason, perhaps abuse, failed to inculcate the child with traditional social values. This is probably why RTCs believe that removing the child from the home is beneficial. Either the home is the source of the behavior or the home is “enabling” the behavior.

 

When deinstitutionalizion happened and the state-run mental health hospitals were closed, the responsibility of providing mental health care services fell back to local communities. Unfortunately, beyond a lack of funding, the other thing that we all forgot was to design a model for treating people with psychotic mental illnesses. In fact, such a model never existed. In the past, psychotic children and adults were institutionalized, and the original model (certainly prior to development of Thorazine) was not to treat but to isolate the patient from society. So when the hospitals closed and care was shifted back to communities, they had no model for care. So they defaulted to the closest thing they had: 12-step programs.

 

Don’t believe me?

In any “behavioral health” program, it sounds an awful lot like Alcoholics Anonymous: Admit the problems you have, make amends to those you have “injured,” and develop a plan for not doing it again. Of course I am vastly simplifying the 12-step process, but that’s essentially what it is. “Parental support groups” or “parental training” sounds an awful lot like Al-Anon. Al-Anon, for loved ones of addicts, is all about getting the parents to set limits, draw lines, stop enabling, and get tougher. The only difference is that Al-Anon preaches that parents are not at fault for their child’s drug addiction while “parental support” for parents of mentally ill is still quite happy to blame the parents.

 

So the upshot is that residential facilities treat psychotic kids the same way they treat drug addiction. They push and punish the child through use of consequences to accept the rule system, ignoring the fact that psychotic children already know the damn rules. They know what they are doing is wrong. Why do you think so many of them commit suicide?

 

A psychotic child is not a drug addict. They didn’t decide to “try” psychosis one day at a party. They weren’t pressured into it by peers. They were born with it. For whatever reason, their brains “misfire” from time to time.

 

The irony is that I feel drug addiction is a symptom of underlying mental illness, a form of self-medicating.

 

The reason 12-step programs work, the only reason that they work, is because of the sponsor and the sense of community. As an alcoholic, you are surrounded by others who will not judge you because they have been there. And you have a sponsor who will be there for you no matter what..

 

Psychotic kids need sponsors, too. Unfortunately, they can’t call their sponsor, so their sponsor has to be there 24 hours day, something no single person can do.

 

The more friendly cousin of the RTC is the Therapeutic Boarding School or TBS (very funny), although the terms are used interchangeably and most mentally ill kids whose parents tell me they are in an RTC are actually in a TBS. RTCs can’t do anything for a mentally ill child as their focus is on “correcting” a behavior. A TBS’s focus is on emotional and academic “recovery” using long-term psychological, emotional, behavioral, and familial development. Their model is the major theories of cognitive and emotional development, using things like Maslow’s Hierarchy of Needs and Erikson’s Stages of Development.

 

Or so they say. It really all comes down to the day to day staff and how much they give a damn.

 

Nonetheless, there is still a fatal flaw in the TBS system: You can’t “recover” from mental illness. You can learn to manage it and indeed have quite a fulfilling life, but it ain’t never gonna go away. It’s like having a congenital heart defect. You can manage it but you can never cure it, not unless you get a new heart… and we can’t transplant a brain. Not that I would want to. To do so would be destroy all the wonderful qualities each of these kids has, no matter how violent they might be.  My online support group is not a group of parents complaining about their children. They never do that. They complain about the system that leaves them with no help, but I have never once heard any of them complain about their child or children. Sometimes there will be a rant about what they are going through and all of a sudden they will say something funny that their child does, something that makes them laugh. What setting up my support group has taught me is not just the problems that parents of mentally ill children face. More than anything, it has taught me how incredible these children are: their intelligence, their sense of humor, their compassion. Every single one of them who is in residential is there either to save their life or to save the life of a sibling. I have seen parents cry and laugh at the same time, thinking of a happy memory. They do have them. Raising a mentally ill child is not an endless nightmare. Maybe we experience more pain than those of you with  neurotypical children. Maybe we have to make choices you couldn’t make. But I believe we also get to experience moments of joy you may never know. Every parent of a mentally ill child knows what it is like when your child looks at you and smiles, their eyes shining, or you see them laugh with joy. In that moment, you know your child, at least for that moment, is free.

 

That laugh. That smile. For a few minutes or an hour, they wipe away all the hell that came before and all the hell that is still to come. Those are the moments we live for.

 

My last blog was about what I believe needs to exist between outpatient and residential, because if you don’t go residential, you have only one other option.

 

Go it alone.

 

That is the choice. Send your child to residential, often out of state, or deal with your mentally ill child entirely on your own.

 

Once UCLA realized and accepted that we would not place Jani in residential, the doctors knew what they had to do. They had to prepare us to go it alone. This is what Dr. DeAntonio told me:

 

“You can’t read too much into anything. When Jani has a good day, just look at it as a good day. When she has a bad day, just look at it as a bad day. Don’t have expectations for how she will act tomorrow based on how she acted today.”

 

He told me that when I was in the pits of despair, when Jani was lying at our feet in the hallway of the hospital, screaming and kicking out because she thought she had missed going to the deck. I remember being stunned by his demeanor. How could he not react to a screaming, psychotic child literally at his feet? Was he made of ice?

 

No, he isn’t. At the time, Jani had just started clozapine, and I was looking for any sign whether it was working or not working. It took me nearly another year to get what he was really trying to tell me: If you don’t live in the moment, this will kill you.

 

He wasn’t reacting not because he didn’t care. He wasn’t reacting because he knew that five minutes earlier Jani had been fine and in five minutes she would be fine again. And she was.

 

The biggest lesson the UCLA doctors tried to teach me is: Don’t be scared. If you are going to keep her with her, you have to get over the fear.

 

In my last blog, I wrote about how Jani has been out of the hospital for four months, her longest stretch since she first went to UCLA in January of 2009. She has been doing well, through the collective efforts of the Newhall School District, us, and a few other incredible people who get her and us through the day.  I know that the nature of psychosis is that it can return at any time, and it can return with a vengeance, with no warning. Yet it still always takes me by surprise when it happens. I knew Jani’s psychosis could return. In fact, I knew it would return. But after such a long period of relative stability, I had started to forget what was most important. I had started to worry about the little things again, like not having any money. As I write this, I have six dollars in my wallet. That is all the money I have. My checking account and savings account are empty. I did buy food before I ran out of money so we are not going to starve, but I won’t be able to pay rent (again) for both apartments. I am teaching three classes at CSUN, but that gives me only enough to pay for one apartment. Last month I cashed out my 504 retirement account, three grand after taxes. It’s all gone, used to pay rent, car insurance, cell phone (which was a couple months overdue), electric bill for two apartments, gas bill for two apartments, Bodhi’s preschool, food, gas, shampoo, soap, laundry detergent, etc. I have no accounts left to mine. I can’t access my CALPERS retirement unless I quit CSUN, which I can’t do because then I will lose our health insurance (not to mention the little bit of money I get).

 

So I started talking off-handedly about working more, since Jani seemed to be doing well. I figured maybe I could go back to doing some of things I used to do, like writing test scoring at CSUN on Saturdays which pays a few hundred. Maybe I could pick up extra classes at College of the Canyons.

 

Maybe Jani didn’t need me as much. We had reached the point where Susan could take both Bodhi and Jani without worrying about her hurting him.

 

I even started talking about us moving back into one apartment again, a three bedroom, reuniting the family under one roof. Originally I was going to give it another year until Bodhi was four, but I was starting think maybe we didn’t need the two apartments any more (which primarily what kills us financially).

 

Jani didn’t say anything while I was mentioning this.

Sunday morning was a struggle right from the start. She was very impulsive, running out of her apartment, running into the street, running (literally) into people like they weren’t there.

 

A couple of days ago Susan’s mother gave her a couple of hundred bucks. After gas in the car, Jani’s meds, and food, it was gone. All through Sunday I was panicking over money, but I was doing my best to keep it inside. It isn’t just the bills. I need money for Jani’s equine therapies. I need money to take Jani places that keep her stimulated and engaged. She cannot just sit home. She needs to be out and doing things all the time to keep her hallucinations at bay. This requires money. I started asking the two different groups that provide her horse therapy if I could barter labor for Jani’s therapy. On Sunday, when Jani kept coming up to me and wanting me to play with her, I kept putting her off, talking to a friend’s fiancé about things I could do for him to make some money.  I was so focused on the need to get money for Jani and our bills that I was ignoring the very person I needed the money for.

 

By late Sunday afternoon, I was starting to get a bit irrational. I’d eaten breakfast that morning but suddenly I felt like I was starving. Instead of going through a drive-thru, I pushed it because I wanted to save what little money I had left. I went to the store to buy things for dinner. My debit card got declined (Bank of America no longer lets you go over your balance) in the check-out line, forcing me to return several items while a line formed behind me so I could get the total down under what was left in my account. I was mortified, even though this has happened to me before since we had the two apartments and B of A changed their overdraft policies. By the time I got back to the car with Susan, Jani, and Bodhi, I couldn’t keep my panic in anymore. I started talking about how we are going to starve, how we will get evicted because I can’t pay November rent, how the TV and internet will soon be shut off because I haven’t paid AT&T. I knew everything I was saying was affecting Jani. I knew I should stop. I desperately wanted to be like Susan, who seems to be able to deal better with having no money. But I was losing control of myself in my fear, even though there was a time, not that long ago, when all I cared about was Jani being okay. If Jani was okay, not having money was the least of my concerns. There was a time when I thought Jani was going to die and I wanted for her to be with us. Somehow, I forgot that. I forgot that once all I wanted was to hold Jani in my arms and for her to stay alive so I could keep holding her. I forgot that God and everybody who He works through have helped to give me my daughter back from a disease that one year ago I truly thought would kill her before she reached adulthood.

 

I popped two Klonapin and managed to calm down. I stuffed my face with White Castle hamburgers, eating a whole box in two minutes. I started making dinner for Jani (mac n’cheese) and Susan’s dinner (pasta with olive oil, red bell peppers, and onions). Susan thought that Bodhi had a poopy coming so she put him on the potty. Then she walked out to get his pajamas.

 

Jani was next to me in the kitchen as I was cooking. I heard her say “I need to go to the potty.” I told her Bodhi was on the potty (we were in Bodhi’s apartment-only one bathroom). Jani started heading for the bathroom. I registered this and knew Susan wasn’t there, but I didn’t move. I was still hungry, still stuffing my face.

 

I hear a crash and Bodhi starts crying. I register this but I still don’t move. Bodhi cries whenever he doesn’t get what he wants and I assume Jani pulled him off and he is unhappy about it. And I figured the crash was just Jani dropping his potty seat on the bathroom floor. But my mind isn’t working right. Something was wrong. I knew it was wrong but I couldn’t seem to make myself move. I see Susan go rushing into the bathroom. She screams, “Oh, God! What did you do!” Still I don’t react. It is like I am in some kind of fog. I can’t move. I hear Susan scream at Jani “Get out!” Something is very wrong. Why aren’t I moving? I don’t want to go. I don’t want to run in. I used to be spring-loaded and react like a gun going off, but I suddenly I can’t make myself. I don’t want to deal with it.

 

Jani comes out, holding Bodhi’s potty seat. She has her psychotic grin on her face. Suddenly, I realize what happened. Jani didn’t just push Bodhi off the toilet. She pulled him off, pulling his potty seat out from underneath him. That means he fell backwards, into the tank, or sideways into either the hard bathtub or the edge of the bathroom counter. Oh, my God! Is he bleeding? Is his skull fractured? Is there a hole punched in the side of his head?

 

I am finally released. I run into the bathroom, terrified that I am going to see blood, or worse, brain matter. Susan is picking Bodhi up off the bathmat where he fell. I see no blood. I see no bits of flesh on the counter or the bathtub. He is scared, but seems to be okay. But how do I know?

 

Guilt erupts from me. I wasn’t paying attention. I failed my son. I run back out and grab Jani by the arm and scream at her, “What did you do?!”

 

How many times in this blog have I written about the need to not get angry when a psychotic child does something wrong? Yelling at a child who is psychotic is the worst thing you can do, but all of that went out the window. Everything I tell you to do, I didn’t do. I grabbed her and I raged at her, screaming at her, enraged at her, treating her like her she was an evil child. But it was me. I was guilty. She can’t control her actions. I can. I should have been there to protect Bodhi and Jani. I failed. I was raging out of my own guilt.

 

She admitted she had pushed him off the toilet. She said it so matter of factly, without any sense of guilt, that I got even angrier, forgetting everything I just wrote above in this very blog about not punishing a psychotic child, and what I have written before that when in a psychotic state the person doesn’t feel any emotion (the “flat affect.”) I forgot all of that. I was treating her like she was just evil, when I have written blogs before about not believing in evil.

 

I screamed at her to get out. For a split second, I was about to throw her out: my eight year old daughter. Sense got a hold of me again and I remembered everything I have said to you in my blogs. Feeling like a hypocrite, I started trying to calm down.

 

“Why did you do that?” I asked her.

 

“I had to go,” she answered. Now she looked confused.

 

“But he was on there.”

 

“I had to go,” she repeated.

 

“Why didn’t you tell him to get off? Why didn’t you ask me or Mommy to get him off? Do you think pulling him off was a good idea?”

 

“No.”

 

“So why did you do it?”

 

“I needed to go.”

 

“If you knew pulling him off was a bad idea, why did you do it?”

 

“I needed to go.” Jani is looking away, to the right and left of me, while I am interrogating her. Her logic is circular. She is looking around, but for what I don’t know. An answer?  I think I see tears in the edges of her eyes. She knows she did something wrong, but has no answer other than the thought she had when she first went to the bathroom.

 

‘Do you understand you could have killed Bodhi?”

 

“I had to go.” Her eyes are moving everywhere except across me. I realize I am bullying her, bullying her out of my own sense of guilt.

 

She runs into the bathroom and throws her arms around Susan, begging not to go back to the hospital.

 

 

 

She was going to stay with Susan and Bodhi while I took our dog Honey out to do her business, but that is no longer an option. She still wants to stay, but she can’t. We won’t let her. She has to come with me. We go up to the local elementary school playing field to let Honey run.

 

Jani is stuttering. She keeps trying to tell me what “Thirty,” one of her hallucinations, is doing, but repeats “thir… thir…. thir…” over and over again.

 

Is this EPS from the Thorazine? I give a her a Benadryl but she is still stuttering.

 

Is this psychosis?

 

I stand there, wondering if I should take her back to UCLA. The only thing that stops me is my own guilt. I destabilized her. I panicked about money. I talked about moving back under one roof. This is my fault. She is struggling now because of me.

 

“Jani, where are we?”

 

“Oak Hills.”

 

“What day is it?”

 

“Sunday.”

 

I am running through the questions psychiatrists ask ER psych consults to determine their sense of reality.

 

“What did we do today?’

 

I need to see if she can remember. Loss of memory is a sign of psychosis.

 

“I could have killed him,” she answers.

 

I feel like shit. I don’t want her carrying around the guilt that she could have killed Bodhi.

 

“Jani….” I don’t know what to say.

 

“You want to play number surgery with me? A five and six are having an eleven.”

 

“Sure.” I would do anything for you, Jani. I am sorry. I am so sorry. This is my fault.

 

Suddenly, she smiles. “You want to play garbage shoot?”

 

Garbage shoot. We haven’t played that in years. It is wear I sit lean down a slide, pretending to fix a garbage shoot, and she comes up behind me and pushes me down. She laughs hysterically.

 

She was going, but she came back.

 

She smiled, her real smile, and she laughed.

 

It was just a moment.

 

But I need to start being grateful for those moments again.

 

[video:

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33 comments on “Hanging By a Moment (There is Nothing Else)

  1. Keep on hanging on…
    I know how tough this has to be for you. My sister has to deal with a schizophrenic family member on a daily basis – it is so hard sometimes to not want to scream at him when he says and does inappropriate things. Sometimes, it takes all her power not to push him out the door and tell him to never come back. But like you said, they can’t help what they do. And all you can do is keep hanging on to hope and any glimmer of normalcy and happiness. It is rough. But you and Susan do a terrific job with Jani. Kudos.

  2. Dear Michael,
    First, thank you for sharing such personal moments. I just read your latest post, and this particular one really hit close to home. Our family, too, is struggling and I have been following your story throughout the process. For all of 2010 we have been wrestling with our 9 year old’s mental illness. Her current diagnosis is bipolar disorder with psychotic features, although it seems we/they are now leaning towards schizophrenia or schizoaffective disorder. We’ve been through a hospitalization, medication changes, and endless stressful, utterly exhausting days. She, like Jani, is the oldest child (siblings are 8 and 4) and we are constantly trying to keep everyone safe. We are converting our family room (of our already tiny house) into a bedroom because the kids’ bedrooms had to be separated to ensure safety. Life, in general, has been totally turned upside down and a constant struggle for all of us.

    Please don’t be too hard on yourself about this one day you just described (we’ve all been there). Remember you are also a parent to Bodhi, and his advocate too, and someone hurt him. It was a natural reaction that will inevitably slip out on occasion, despite the even the very best attempts to prevent it. I applaud your determination to do the best for Jani. Truly, you and Susan are amazing people, and I wish all of you the very best.

    Karen (from greater Philadelphia)

  3. I’m fighting back tears after reading this. You had a truly human reaction to the incredible stress of raising a mentally ill child on your own and are very brave to write honestly about it. Thank you for sharing. Ann (KY)

  4. forgiven
    my parents have done that loads of times to me.. so have my siblings.. ive forgiven them.. im sure jani has forgiven you too.. im too afraid that my parents will put me back in to hospital if they cant handle my behaviour

    Note from Michael: Thank you, Jack. I appreciate that. But what makes you think your parents will put you back in the hospital if the can’t handle your behavior? Are we talking short-term acute here or long term residential?

  5. Thank you for this – I know how hard it was for you to write about losing your temper. I am raising my granddaughter who is mentally ill and have had really hard time realizing that it is the mental illness, not her trying to hurt her brother, that she forgets things, that she truly doesn’t understand what is going on sometimes. But, she is the most beautiful girl, with a great sense of humor and truly learning to be empathic and how to have friends. I am so thankful for her courage and that she will perservere in spite of me! You are a hero and and your child’s first, best advocate. Question about insurance – doesn’t she qualify for SSI/Medical due to her disability?

    Note from Michael: She does get SSI but it isn’t much (200$). It helps though.

  6. She remembered
    I know you feel bad about your reaction. I think it was understandable, so try not to beat yourself up. I noticed though, that she remembered. In a lot of your other blogs, you have stated she has no memory of violent acts. Not to belittle it because I’m sure it was a horrible event, but is this a step forward,in a way? Is it possible she wasn’t psychotic, just upset over what she felt were upcoming changes? Maybe I’m obtuse. You and Susan can probably differentiate by a lot of different things. I hope you finish your book because I will buy it, and I know a lot of people who will.

    Note fro Michael: Not at all (being obtuse). I hadn’t thought about it like that but you could be right: the fact that she remembered could be a positive sign. Let’s hope so.

  7. I think this is the most honest blog I’ve read from you. Please believe me, EVERY parent on earth makes mistakes, no matter how hard they try not to and no matter how much they love their children. Jani is a VERY smart kid. I have no doubt she and Bodhi both know how much you love them. I’ve never even met your family in person, but I don’t think I’ve ever encountered a father more devoted to his kids. To be honest, I don’t know for sure that, had I been psychotic as a child, my parents would fight as hard for me as you’re fighting for Jani. It’s sad, but the truth. Part of the reason I like reading your blog so much is because I am amazed at the passion you throw into your children. Even after reading this blog, I still stand by that.

    Note from Michael: Thank you, Cassie.

  8. reply
    my parents keep saying they will.. also theyve have had me sectioned many times before.. but they now just use it mostly as a threat.. as do the drs.. only short term till the psychiatrists say im well enough to be at home.. id refuse to go long term

    Note from Michael: Do you feel you need go the hospital during these times?

  9. Ideas & Emotional Support
    Your family is an inspiration to me- especially your dedication to Jani. I know financially, it’s hard. I quit my main job at the beginning of this year- now I only work 2 days per week & I don’t know how much longer I can handle it.

    With regard to CSUN, I dropped out years ago and I don’t have the drive or the energy to go back. I also just felt like the environment there was kind of unfriendly and that made my decision much easier, I guess- but that’s just my experience. But you sound like a caring person that would also make a class more interesting.

    I feel your pain because we understand what it’s like to care for someone who’s very mentally ill- it takes a toll. I wish I could help financially but at least I can offer some ideas and exchange emotional support.

    So these are just some ideas for your financial situation: First, since you have no money in the bank, I’m pretty sure your family qualifies for food stamps- You can’t have more than like $4,000 in the bank. Another thought is subsidized housing where the gov’t can help you pay for your rent or they can provide low-cost housing. Or have you thought about trading in your two 1-bedroom apartments for 2 studio apartments (or a duplex apartment) instead? Also, if you have a YouTube account and post videos of what psychosis is and how your family copes, it will educate many people and you can even make money on YouTube if you become a partner. I feel bad that you’re all struggling not only with Jani’s psychosis but on top of that, the financial issue.

    I also wanted to say be careful with the Klonopin- Benzos are addictive and withdrawal is absolute torture. I had horrible withdrawal symptoms FOR SEVERAL WEEKS when I tried to quit and now I try to be more careful. My doc has me on Xanax and Klonopin and I tend to do the same thing you’ve done (I sometimes take enough to just pass out when things become unbearable).

    Note from Michael: I don’t take Klonapin on a regular basis. Only when I need it.

  10. She remembered…
    Ditto the other comments Michael. Don’t beat yourself up over this. It’s one incident on one day and honestly, I would guess the majority of the parents on here have been exactly where you were in this moment–I know I sure have with my 10 y.o. daughter. While she is not schizophrenic, she is dx’d as BP along with severe ADHD and Dyslexia, a “borderline” IQ of 70 and on top of all that she was sexually abused in her foster home as an INFANT before we adopted her. Sometimes I think the difference between Jani and our daughter is that my daughter DOES know the difference between right & wrong but is so angry at the world that she just doesn’t care who or what gets hurt. There are days that I want to run out of the house screaming–back to my former life…the one with friends, fun, travel, and just being “normal.” But for whatever reason, God graced us with this child and though the struggles are beyond comprehension for most average families, we keep on keeping on and we live for those rare and shining moments that we see/feel her actually connecting with us, showing that she can love and be gentle, have a moment of guilt (yes, we even are happy when she feels guilt for something!) or interacting well with another child.

    I take Jani’s recall of the incident as a VERY positive sign. Whether it was just the undercurrent of fear she was sensing in you, or whether she truly was on the precipice of another psychotic state, she did express a normal emotion with the tear and her asking you to “play” was her way of apologizing, whether consciously or not–she wanted to see the happy you again and even if she couldn’t verbalize it, she associates that game with Dad, Jani, and fun.

    Jo

    Note from Michael: Thanks, Jo. Do you know about about private online support group for parents with mentally ill children? Here is the link:http://health.groups.yahoo.com/group/parental-support/

  11. Sorry to hear about Jani getting into trouble, but I’m sure it’s just a bump in the road out of Calilani. Anyway, despite all that happened, it’s nice to see Jani smiling through her difficulties, like she always does. I have a lot of faith in both you and Jani.

    Note from Michael: Thank you, Carl, as always, for everything.

  12. Hi Michael I have a question. When is the book coming out? If it’s out I can tell everybody to buy a copy and that might relieve things financially for your family. Perhaps Oprah will let you on her book list or promote it for you. That would be good for people to know it’s available for purchase.
    And if Jani is doing better now like I red in your last blogs, is there any chance you might return to one appartment? That would really help your finances.

    Take Care and believe in yourself.
    Bye Tom

    Note from Michael: Hi Tom. The book won’t be out until spring 2012 at the earliest. I am still writing it and it takes about a year at minimum to prepare a book for publication. And I was planning on returning to one apartment but then the most recent incident happened where Jani hurt Bodhi, so I don’t think it is a good idea at this time. Bodhi needs to get older before we can move back in together.

  13. I now only take Xanax or Klonopin on an as-needed basis too but two years ago, I didn’t know any better. My Dr. had prescribed them to me to take every day and I took them every day for like 6 months until I started having some side effects and I decided I didn’t want to take them anymore. I never knew what ‘withdrawal’ was until I stopped taking them. So anyway, I’m definitely more careful now and I’m my own advocate when it comes to meds and don’t just take anything a Dr. prescribes me without being better informed. I don’t like taking meds unless I really have to. So I take several when I feel too overwhelmed.

    Anyway, with regard to your recent blog I’m gonna tell you the same thing- don’t feel so guilty about making mistakes. Jani knows you love her and want what’s best for her- I guess that’s why she didn’t hold it against you when you yelled at her for pushing Bodhi. She knew she did something wrong but couldn’t control it. And your not being able to move when you heard your son cry sounds like severe stress.

    As Jani grows older, she will most likely learn to control her impulses to hurt others. But now she’s still a child. Meanwhile, until your son is old enough to protect himself, you and Susan are doing the right thing by keeping them separated.

  14. reply
    no not really, most of the time i feel i dont.. eg if im not eating for days.. it doesnt mean i need hospital.. i would eat if my parents stopped putting things in my food.. the psychiatrists and social worker always over rule me saying im not thinking clear enough to choose etc.. so i dont really get a choice..

    Note from Michael: What are they putting in your food? Meds? Or something else?

  15. I know you’re against it. I respect that. But your description of RTC / TBS isn’t our experience, at all. There is no reward and punishment system. No trying to get him to “recover”. Getting him to learn coping skills? Yes. There are some good programs out there.

    Note from Michael: I probably am painting with broad strokes. I do think that in some cases they work. I think in some cases (like yours), they are necessary. I am not going to say “We would never…” because absolutes are useless in our lives and someday we may be faced with that terrible choice. My issue remains the lack of choice: either substandard outpatient care or residential. Parents shouldn’t be forced into sending their kids to residential because there are no other options, unless there truly are no other options. In your case, there truly were no other options.

  16. Michael, I saw the documentary last night and learned so much, most helpfully for dealing with mental illness in my own family. The persistence and dedication that you have shown was more than inspirational. In particular, your closing remarks about the rightness of the presence of the family member in the world rang true to me right away – but it was also helpful to hear someone else articulate it from the depths of struggle. Maybe this is not the world we envisioned, but it is the world we find. And we can deal with that. Thanks and my best wishes to you and Jani.

  17. You guys are truly inspiring. As for me, I have a puny little suggestion/question: could Jani keep something like Cogentin on hand for EPS? I carry a little bottle with me in my bag, just in case. You’d know better, of course; I was just wondering.

    Note from Michael: She takes Benadryl on a daily basis. Cogentin didn’t work as well for her.

  18. Living in the moment, planning for the future
    Hi Michael,

    I just started following Jani’s story recently and I applaud the tremendous love and dedication you and your wife have shown for your children.

    I have a son who is diagnosed with Asperger’s syndrome, but he struggles with something much more complex and dangerous than communication, emotional and social issues. Some AS kids obsess over movies, but my son, since the age of six, has suffered with a relentless obsession with self-harm/suicide, and frequent and sometimes powerful compulsions to hurt or kill himself.

    No firm diagnosis on that yet. I was told possible PDD-NOS rather than AS with psychotic tendencies, but I don’t think he experiences any sort of psychosis. He’s all too “there” and terrified.

    Regardless, there’s something more than a typical AS obsession going on with him, but as a result, I can relate to your living situation, in a way. I’m sure you’ve considered all of the options within your financial means, but I thought perhaps I’d describe our set-up to you, as it may be something that is a realistic option, should you find the right place at the right price.

    We live in a three bedroom bungalow with a basement apartment. The upstairs (ground floor) is safe in the sense that it’s thoroughly hazard-proofed, and yet it has all of the amenities of a regular home. Unfortunately, it looks and feels much like a psychiatric institution, but the alternative would be trips to the real hospital or worse.

    A (locking) door from the kitchen leads to the front hall/entry and subsequently the basement where through another (locking) door we essentially have a full apartment without the extensive proofing and padding. There is a second kitchen, a second full bathroom, and also our home office and a second TV/rec room.

    The initial idea with taking on the basement apartment was to have a place for my husband and myself to feel human for a few hours at the end of the day, but it has since served to be a place where we can ALL feel that way, and a place where our younger son can be safely away when his older brother is not in control of himself.

    The ground floor is where my husband and I can take some comfort in knowing that our oldest son is safe on bad days. He’s free to seek privacy in his room (which he now desires at his age) or hang out in the living room or help in the kitchen. The basement is open to him with supervision on good days. He likes computers and board games, which we have there. The downstairs rec room feels like a family room and not a psychiatric ward common room, which is more or less what the main floor living room resembles.

    I know that you’ve probably looked at such options in your area already, but the hard truth is that it could go either way in the future and a three bedroom single apartment might not be the safest option. I’m sure you’ve considered that too, but I thought I’d throw this out there.

    God knows, I know what it’s like to live in daily fear for your child’s life with no end in sight. It slowly drives you mad, but as parents, we stand a better chance of helping our kids if we tend to our own mental health as well as theirs, and it’s amazing how finding ways to sneak some normality into an atypical home and life can go a long way in keeping you sane.

    Note from Michael: Thanks. For the time being we are staying with two separate one bedroom apartments, for as long as we can continue to pay for them (which is always a question). But we have no other option so we press ahead.

  19. single mom of 2
    Michael,
    I always get so much out of your writings. I just have such limited time to much of anything but to take care of my 2 children. I want to comment on a couple of points.
    First, I firmly agree with drug addiction being a form of self-medicating. My father was an alcoholic and died due to complications at age 48. His history suggests underlying bipolar illness.
    Second, your explanation regarding residential facilities and centers is brilliant. You have given me so much more to think about and challenge the system with. For the reader, my son is 7 and has been diagnosed with ADHD, ODD, Reactive Attachment, Mood disorder with possible Pervasive developmental disorder and Post traumatic stress. He has been hospitalized 3 times and today I am asking for a referral again! I can’t accept this is the best “they” can do.
    Third and lastly, your personal telling of the recent family problem. I thank you and Susan, as always, to have the courage to speak out and tell it like it is!!! Your family gives me more comfort than you’ll ever know. It is only myself taking care of a complex little guy and I have lost my composure way too many times to the outsider’s point of view. They do not know my reality. They do not know my choices. they do not know the cruel indifference, incompetency and superior stance of the mental health system of care. Children need and deserve to live with their families AND receive care. Regardless of my flaws and weaknesses and limitations I know I have given my son the best life possible. It goes without saying that you and Susan are doing the same for Jani and Bohdi.
    I hope I haven’t written too much! Your writings help so much to keep my advocacy spirit alive and passionate. Thank you!!

    Note from Michael: Thank you, Karen! Hang in there. We are with you.

  20. Michael,
    I can’t even comprehend the struggle you’re going through, and I think the dedication and commitment you have for your family is absolutely incredible. I’m 20 years old and have no children, but the way your story moved me and how much I’ve been pondering this has made me feel, in a way, like Jani is my own daughter, someone precious who I have to protect. I have a tremendous amount of respect for what you’re doing and how far you’ve come. Hope your family reaches that happy place you’re striving for.

    – Ross B.

    Note from Michael: Thank you, Ross. I hope you transfer that feeling to other mentally ill children. They all need our help.

  21. I’m not sure how related to this post this is, but I’m going to share anyway. I’ve commented once before, awhile ago. I’m a case manager who works with severely and persistently mentally ill adults (mostly schizophrenics). This has been my job since I graduated from college. At any rate… I wholeheartedly believe that you’re doing the right thing by not putting Jani in residential treatment. I just don’t believe that it would be good for her mental health in the end. However, with that said, I do know people who live in group homes as adults. Personally… I’m not against this. One reason I’m not against this (one of many…) is that, someday, they will be on their own. Parents (or any other caregiver), eventually, pass on. I think these can be a great way to have some independence from the home, but without some of the risks. I guess I’m just curious as to your thoughts on the subject.

    Notes from Michael: I wholeheartedly agree with you, Christine. You bring up an excellent point that caregivers will not be around forever. Residential settings, as long as they have a high quality of care, can be excellent for teenage mentally ill children to help prepare them for social interaction, as long as the residential facility has lots of community interaction with the local community. After all, the purpose is to help kids function in society and that can’t happen if they are isolated. I am opposed to residentials only when they are forced upon a parent because of a lack of in-home and community support. I also like you don’t think they are a good idea for very young children. You wouldn’t send an eight year old to live on their own anyway if they were not mentally ill. Sixteen? Different story.

  22. Michael
    I have a question about finding a therapist for Jani. After all these many months following Jani’s story and the battles your famlily has fought to find her the best care, are you and Susan now the best option for Jani’s progress? The video of Jani at the animal shelter, the trips to the horse farm, things like this seem to be the very best thing for her. You once said that if you can keep her occupied, then you can hold those in Calalini at bay.
    Do you think at this time she would benefit from regular visits to a therapist? Can they offer her things that I am not aware of in my small knowledge of this disease? It seems that she is getting the best of what she needs at home.
    I hope this doesn’t sound strange, but I find it amazing what the human mind can do. Jani has another “real” world, as real sometimes at this world. Susan asked Jani on one of her videos kind of as a joke if her imaginary world really did exist it was just that we couldn’t see it.
    I’ve thought about that a lot.
    Do you have any plans on a new video of Jani? I know lots of us out here would love to see her again.
    The prayers from our small community here in Michigan are always with you and your family.
    Joe

    Note from Michael: No, Jani doesn’t have a therapist right now. I haven’t found one whom I think would be helpful for her. In my previous blog I talked about the kind of therapists kids with psychosis need, and it isn’t ones who just sit in an office for an hour once a week.

  23. questions
    First of all, i just wanted to say that that song, goes with that story so well. You really have a gift to pick a great song! I listen to same music you do!!! (except little lion man witch you turned me on to, and now i can’t stop listening to it!!! )… so what is Jani going to be for Halloween?… will she trick or treat?…

    i have question about Bhodi… what are you going to tell Bhodi when he is older and asks about his sister?… lets say he is… 5, or 6.The reason i ask is because i know a similar situation (older sibling is disabled) and the younger sibling be-littles the older one and is very rude. I don’t think the younger one knows about the older ones struggles.
    Also, i know this is a lot to ask but, i watched your YouTube video… was that you?… and if so… can you make more videos?… not necessarily about psychosis… but just about her life… like a little clip every few weeks… If its too much on your plate, don’t worry about it ok?… i know you have the book,and of course Jani.
    thank you!!!!!!
    -tye

    Note from Michael: Jani went as Supergirl for Halloween and Bodhi was Buzz Lightyear. We went trick or treating at our local mall, which is what we do every year. As for what I will tell Bodhi, I will tell him the truth: that his sister has a disease of the mind that sometimes makes her do hurtful things. I think it is always best to tell the truth.

  24. hello
    what is EPS?… and what does Benadryl do for it?
    thank you!!!

    Note from Michael: EPS stands for extrapyramidal symptoms. These are symptoms that can occur when taking anti-psychotics. Tardive dyskenesia is an extreme version of this, but EPS would be shaking, constant movements, or rolling the eyes, etc. Benadryl treats these symptoms because anti-histimines are also muscle relaxants.

  25. DON’T FEEL BAD!!!
    Michael, You guys are amazing!!! i can’t imagine the stress you guys are under all the time! It not that bad, what happened. Not only is she schizophrenic, but she is just 8 years old!… I babysit children that are Jani’s age and whenever i reprimand them for doing something, they get over it and forget that i got upset the very next day. She won’t remember that her entire life.
    I don’t know much about schizophrenia, I don’t know how their mind works… all i know is that she is young and even if she has schizophrenia… she is still a little kid… I know that sometimes when she is going through psychosis, she can’t control her actions but lets face it, sometimes she can and sometimes she misbehaves like all other 8 year olds
    questions:
    – Does jani sleep more now since she had major insomnia when she was a baby?
    -This is a very large question,
    Ok… you know how when kids are young they have no idea about anything?… well… When jani was younger… how did she even get the ideas of suicide?…
    – Also, when she blanks out and stares into space… what is she doing?… is she looking at a hallucination or something els?

    Note from Michael: Yes, she sleeps through the night now. As for how she got the idea of suicide, I have no idea. Clearly, it was something internal, an internal command. Just because kids don’t understand the concept of suicide doesn’t mean they can’t do it. And, yes, when she looks up she is seeing something swirling above her head.

  26. You are doing the best you can!!
    Michael,

    I am so sorry you are having such a hard time.

    There are more of us with you than you may realize.

    My 4th child was the one who basically changed my life forever. I KNOW you are telling the truth about the lack of sleep as an infant. No one believed me until they saw it for themselves; my baby would sleep for FIFTEEN minute intervals, then wake and start the whole cycle again. He really had difficulty nursing, and would nurse for a few seconds, pull away then nurse again. There was NOTHING that I could do, except pray and pull some supernatural human strength and just get through each day. I was so exhausted, AND recovering from a c-section that I could feel the fatigue in the marrow of my bones. One of my eyes started drooping all the time. The strange and tragic thing is, when a child comes into the world, and is very different, or has some severe difficulty, people don’t rush toward you to help. They run away. My little one cried for just about six months. I tried everything. I would call the pediatrician and his nurse in desperation. His nurse actually said, “Nervous mothers have nervous babies.” (I was NOT a nervous mother. I was in my 30’s, and had older children. I was an experienced mother; I KNEW something wasn’t right.) As he grew older there was a period of a few months of strange calm before the storm. Then came toddlerhood. I remember my mother complaining to a friend of hers that I had a baby that would have to be seen to be believed. My other children were completely ‘on hold.’ It was ALL I could do to keep everyone fed, and alive. How many times have you said you just want to keep Jani “alive.” People who haven’t lived it couldn’t possibly even comprehend what you mean when you say you just want to “keep her alive.” As time passed on the judgement from others began. One relative said, “I really think your problem would be solved with a spanking. You’re causing the problem.” Relatives were obvious with their preference toward my “normal” children, and their rejection of my “spoiled” child. My thought was “When Hell freezes over I’ll spank my child, who is ill, and was born that way, just to please you.” People judged us if we took him out. People in restaurants would say the rudest things imaginable to us. Thus, we started staying home a whole lot more. Then people accused me, relatives too, of “isolating” him. One relative told me to just immerse him with other kids; his problem would just go away. Yeah, right. The same relative told me I would have a 30 year old man living at home with me, afraid of the world. Duh–I ALREADY KNOW that he will always live with me.

    There came a day where he tried to jump off a balcony, but my teenage son, thank God, SOMEHOW caught him by the back of his clothing as he was literally already falling down. Afterward my teenage son collapsed and couldn’t breath well for about an hour. I remember he was so traumatized he couldn’t speak.

    Michael, I know how you feel!! I am highly educated, but the chance for a career is gone to me forever. One relative told me how sorry she feels for me that we don’t travel to Europe. “Travel to Europe?” LOL. I told her I couldn’t give a whit about traveling to Europe. My only thought is that I MUST STAY ALIVE to care for my child and what will happen when I pass away? I don’t want to burden my children, but they have promised me they will see him through.

    Remember the song “He aint heavy–he’s my brother?” My children have basically lived that song the day I brought their baby brother home.

    I don’t grieve for what I may have lost. I only want what you want, Michael. I want my son to be as happy as he can be. I know he will never marry, never have children. And it HURTS when he says someday he will be a father.

    My goals are small. I just want to STAY ALIVE AND TAKE CARE OF MY SON AND KEEP HIM SAFE. KEEP HIM SAFE; KEEP HIM AS HAPPY AS HE CAN BE.

    God bless you Michael, Susan, Jani and Bodhi. We may not know each other; but we are together somehow.

    Here is to another day.

    Note from Michael: Robin, if you are not already a member, please consider joining our private support group of other parents with children who are mentally ill/on the autistic spectrum. We always try to gather together as many of us as we can to show the world Jani is not an isolated case. Here is the link: http://health.groups.yahoo.com/group/parental-support/

  27. re: Robin
    Robin, your story is one of the most powerful things I’ve ever read. My best friend (who inspired me to become a social worker) has paranoid schizophrenia. She uses every resource and coping mechanism available. She is also happily married to a wonderful man (they are both 33). They have their struggles but are very much in love. There are no plans for children but they still have a very full life. In fact, they’re a lot happier than most couples I know! Please don’t give up hope that your son might find the same kind of happines someday. My friend’s own mother was shocked, happy and then (on a certain level) sad when her daughter found love and moved away.

  28. I’m fascinated with your blog and your struggle. And I admire your honesty but I really wish you weren’t so selfish. I really want to be in your corner (I’ve read the negative press) but it’s hard when you project this illness onto yourself and start acting like you’re the hurt sick child. I can’t pretend to imagine how hard it is for you but my heart breaks for Jani, she’s tiny and innocent.

    Note from Michael: Okay. Not sure how I come off that way but I suppose if I do it is natural since she is my daughter, my child, and it is hard not to feel hurt. I have to tell her story through my eyes because that’s all I have. One day hopefully she will tell her own story.

  29. Hardly scary
    I wonder if “undecided” (post above) is a parent? Parents go to the darkest, scariest place imaginable when their child is hurt/sick/afraid. Only another parent can begin to understand this pain.

    Selfish? Hardly.

    Michael, Everyone cracks under pressure sometimes. I can’t imagine the stress you and Susan must endure on a daily basis in order to give Jani the best life possible considering her illness. I’m inspired by your strength and determination.

  30. Thank you Mia!
    Thank you for your kind words. It is great to read that good folks like yourself are into social work. We have a terrible shortage of GOOD social workers.

    I know there is always hope. I am happy to read about your friends. Sending you a huge hug across the miles. 🙂

    Note from Michael: I second Robin that we need good social workers who really understand what families with a mentally ill child go through!!

  31. I can’t stop crying… I read your posts and I know. I know and you know, and all of a sudden I don’t feel so alone. At the same time none of it matters because our options are still so limited.. God Bless you and your family.

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