MyBlog

Just Follow Me (If You're Trying to Get Out)

On Friday, I was finally able to touch base with Ari Levy, Director of Programs at the Santa Clarita Child & Family Center. This was not for lack of trying on either of our parts. We had been trading voicemails messages for more than a month since Jani’s therapist terminated Jani’s therapy and we were informed that no other therapist at Child & Family was willing to work with Jani.

 

To briefly recap preceding events:

 

In mid-August, I called Dr. Levy wanting a meeting to discuss other things the Child & Family Center could do to help Jani and other children with psychosis, as talk therapy is generally not effective with mentally ill children, at least on the surface. This is because talk therapy is designed to get the child to think about his/her actions and feelings. The problem with schizophrenia or any other mental illness where psychosis is present is that what is discussed or thought about in therapy, when the child is not in a psychotic state, will not carry over into psychosis. During psychosis, the ability to rationally think is overwhelmed by the disordered thinking, meaning that for as long as the psychosis lasts, whatever “tools or strategies” that were taught before go out the window. Second, psychosis is thought, not emotion. Anxiety can and often does trigger psychosis, but any violence or inappropriate actions that occur during psychosis are driven by thoughts, not emotions. Individuals with psychosis do not become violent or self-injurous because of an inability to process emotions. In actuality, the presence of emotions, even negative ones like anger, are a positive sign because they can’t exist during a psychotic episode. Psychosis is like a record getting stuck in a grove. The thought repeats itself and will not let the individual go until something is done to relieve the thought.

 

In a nutshell, talk therapy doesn’t work because it is focuses on the behavior rather than the cause. It also assumes that the patient with psychosis will be able to stop and think about consequences during a psychotic episode, which is impossible because someone in a psychotic state cannot internally shift from the destructive thought. Awareness of consequences requires the patient to be somewhat rational. Without rational thought, talk therapy can’t work.

 

This is why I have come to believe that for patients with psychotic illnesses, an hour or so a week of sitting in therapy talking is ineffective. This is not to say that it has no value at all. It’s value over the long term is that the psychotic child (or adult) can slowly develop a relationship with the therapist, and any relationship with a flesh and blood human helps to counteract the impact of the hallucinations. If Jani hears Calalini all the time, it is incumbent upon us, those in her life, to be louder than Calalini.

 

But developing a meaningful human relationship is not considered a sign of success in treatment. This is because it takes a very long time to achieve (often years) and because it doesn’t “fix” the problems that brought the psychotic child to therapy in the first place. This is the fundamental way in which there is no parity between physical health care and mental health care. If you have an infection, doctors will (hopefully) continue to treat you until they have eliminated the infection, no matter how long that might take. Mental illness, on the other hand, has a cut-off point, enforced by both private insurers and state mental health care agencies. Before Jani’s story became public in the LA Times, twice Blue Shield cut off Jani’s inpatient benefits on the grounds that she was showing “no marked improvement.” I used to compare this to cutting off treatment to a patient with cancer on the grounds that their cancer hadn’t responded to the first round of treatment. I have stopped using this analogy because it doesn’t quite work. First, insurance companies actually do cut off payment for cancer treatments if they, not the doctors, feel the patient has little chance of surviving the cancer. Second, cancer can be a death sentence, particularly if it is located in an area difficult to treat. Not all cancers are created equal. Schizophrenia is perceived by the public as a death sentence, but it isn’t. We cannot cure schizophrenia, but it is well within our means to treat it and manage it well enough that the patient can enjoy a fulfilling life. Every day in this country we pour millions of dollars into prolonging the life of terminally ill patients (and I’m talking about people in their 70s and 80s, even 90s, not children-it is our moral responsibility to do whatever it takes to save the life of the young), to give them a few more months, even weeks, of what has already been a very full life, yet we won’t spend even a fraction of that money to provide a happy and fulfilling life to mentally ill children. Schizophrenia and other severe mental illnesses are not terminal diseases. Instead of spending money to isolate them from society, we could spend much less to give them the support needed to function happily within our society.

 

What I was proposing to Dr. Levy was a new paradigm for psychologists and therapists to work with mentally ill children. The only way the therapist can have ANY impact upon the psychosis is if the therapist is with the child WHEN IT HAPPENS. This means that sitting in an office does no good because a therapist’s office is not the real world. Instead of sitting in the office for an hour, why not go out with the child into the world for an hour? Go to a park? Go to get something to eat? Go to the mall? Go to school? Go anywhere in the real world. First of all, this inserts the therapist into the life of the mentally ill individual in the place that they live. Second, it allows the therapist to be there to help the patient get through stressful events in the real world that can trigger a psychotic episode.

 

I am not saying that the therapist needs to spend 24 hours a day with the patient. Putting aside their need for their own lives, which doesn’t move me that much (I’m sorry, but it doesn’t), it also doesn’t help a child or adult with psychosis deal with the reality that in the real world, people are going to come and go.

 

You want to know why so many parents of mentally ill children resent the mental health care system? Because while the therapist is sitting in her office passing judgment on the parents or offering inane suggestions on how to deal with a situation they know nothing about, the parents are sitting there wondering how they are going to get through the other 23 hours of the day. A child with psychosis, particularly a young child, can never be left alone, because they are never alone in their own heads. I am not saying that if left alone they will hurt themselves, although this is a significant risk. They are not dangerous and need to be watched. What they need is attention from a flesh and blood human being who will interact with them and engage with them so the focus of the child is on the person and not on the hallucination. After medications, the biggest weapon against severe mental illness is eye contact, a soft and soothing voice, time to spend, fun activities, and respect for what they say and do along. You have to want to spend time with these children, because if you don’t, they will pick up on that.

 

What mentally ill children need, once medication has reached the limits of what it can do, is people. You. Me. Anybody who sees these kids as worthwhile. They need people, and unfortunately they need a lot of people, because we are only human and we burn out. You have to keep the mind distracted from the moment they wake up until the moment they go to sleep, every day, for the rest of their lives, and there is no one on earth that can do that alone, although every parent I know of a mentally ill child tries.

 

You got to spend some time with these kids and you have to go to them. They cannot come to you.

 

Parents resent the system because the system makes parents do it all on their own. If you can’t do it all on your own (and no one can), residential is your only other option.

 

I have developed a bit of a reputation amongst other parents of mentally ill children for being opposed to residential treatment. I am actually not. What I have a problem with is that there are two options: limited outpatient care, typically once per week, of talk therapy, or residential. This is like getting a patient with a bladder infection. The first treatment is an outpatient regimen of antibiotics. If that fails, then we go straight to surgically removing the bladder and replacing it with a colostomy bag. I don’t know about you, but I would want to try some other options before they cut a part of my body out.

 

For those of you without mentally ill children, this is the truth: there is nothing between limited talk therapy on an outpatient basis and residential, where the child is removed from the home. It is, without question, the largest gap in health care in America.

 

IDEA (Individuals with Disabilities Education Act) guarantees all students the right to “an appropriate education in the least restrictive environment.” Yet, IDEA is essentially, although not legally, violated everyday because you go straight from outpatient (least restrictive) to residential (most restrictive).

 

We can fill that gap, which is what I was hoping to get Dr. Ari Levy at the Santa Clarita Child & Family Center to sign on to. We can offer additional therapies to fill the day for mentally ill children. How hard is it to offer art therapy? Occupational therapy? Recreational therapy? Equine and other animal therapies? Cooking therapy? Music therapy?

 

All you need is someone willing to teach these classes, plus a few aides (which could easily be psychologists or therapists if they aren’t too egotistical to do it).

 

Would these services benefit Jani only? Not at all. We know many parents of mentally ill children, many of them now in residential, who would bring their kids to such a place, just in the Santa Clarita area. Every one of these parents left the Child & Family Center because they weren’t actually helping, and the Child & Family Center happily let them go because kids like ours screw with their success rates.

 

If you want to have a successful impact upon a mentally ill child, throw out the monthly or quarterly progress reports. Start thinking about a year, five years, ten years. You can make a huge difference in these kids’ lives, but you have to be patient. As a point of disclosure, the State of California Department of Mental Health is now requiring all providers of outpatient services to show evidence that a course of treatment is being effective, with a time deadline of one year. Schizophrenia and other severe mental illnesses are lifetime afflictions. They need support over their entire lifetimes, not for just year. You can’t learn to manage a serious mental illness in a year. Insurance companies are worse. They give only two weeks. Get better or get out. I’d like to see them go down to the Shriner’s Hospital and pull the plug on kids with leukemia because their cancer hasn’t gone away after one year, or two weeks.

 

What do I want from the Santa Clarita Child & Family Center?

 

  1. Get therapists out of their offices and into the community with the kids they treat. You can’t help a child learn to function in our society unless you are willing to go out there with them.
  2. Introduce additional therapies: Offer equine therapy through Carousel Ranch in Agua Dulce. Carousel Ranch provides equine therapy to kids with severe mental and physical disabilities and autism. They are struggling to stay afloat. Child & Family is flush with money, both from DMH and from their private and corporate donors. Set up a program with Gentle Barn in Canyon Country, where kids receiving services through Child & Family can go once a week and feed the horses, pigs, donkeys, and chickens, along with other caretaking duties. Offer art therapy, with an art therapist who is trained to work with mentally ill/autistic children (they could probably set this up with help from the Saugus and Newhall School districts. Offer music therapy (Resnick at UCLA has a music therapist). Find a local restaurant that would be willing to open its kitchen with a cook that would teach an hour a week of cooking class (I am sure there are dozens of local restaurants that would be willing to do this).
  3. Have therapists go along to meet the kids at these therapy sites so that the children/teens can receive therapy as they are actually functioning in the real world.

 

That’s it. That’s all I want from them. I don’t think it is too difficult. I would do it myself but I don’t have Child & Family’s deep pockets. Child & Family Center could establish itself as the foremost outpatient treatment facility for childhood mental illness in America. By following my suggestions, they could create a model that could replicated all across the country.

 

All it takes is the will.

 

All of this is what I wanted from Dr. Levy back in August when I first called him. Unfortunately, I obviously didn’t articulate my desires as well as I should, because he came into Jani’s IEP wanting to cut her therapy from three days a week to one. In the same IEP, Jani’s therapist told us that she felt Jani wasn’t getting any better, which contradicted everything she had been telling us in our sessions. Dr. Levy later admitted that Jani’s therapist had been afraid to be honest with us. Afraid? Why? Okay, yes on occasion she would bring up residential, which we always refused. So was that it, then? Was that what she always believed Jani needed? Is it really that she afraid to be honest with us or that she simply couldn’t get us to accept residential?

 

Who knows?

 

I was hurt. I felt betrayed by this woman. So I blogged about it. In my blog I do sometimes name names. I do this because I am hoping if I drag you into the public eye, you will rise to the challenge and do a better job. This is what happened with the Newhall School District. No matter how many times the director of pupil services may have felt hurt by my statements, he never gave up on Jani and never stopped working with us. He came back each time determined to do better, even though he felt that my criticisms were not founded. He understood that I was coming at this as a parent and that if I was criticizing the district it meant they needed to show me and Susan what they were trying to do. I respect that. I respect those who can take a licking, even if they perceive it as unfair, and rise above it to make it right.

 

Jani’s therapist didn’t do that, however. She cut Jani off because she didn’t want to work with us. On her part, this was a short-sighted decision because it led to me mentioning her more in my blogs. At this point, it might be advisable for her to stay with Child & Family because I don’t know how she would do in private practice. Of course, not everybody reads my blog and it is, after all, just my opinion. But I wouldn’t want my child working with a therapist who cut another child off. But that’s just me. I just think that cutting off a therapeutic relationship with a child is pretty despicable.

 

Dr. Levy mentioned that he had asked other therapists if they would take on Jani’s case. They all said no. Dr. Levy, to his credit, actually did try to force the issue, reminding said therapists that they do in fact work for a state contracted agency and are obligated under law to provide therapy to Jani. One apparently asked him for a pen to sign his/her letter of resignation. Dr. Levy backed down.

 

I honestly can’t say what I would have done in his position. Part of me, the father in me, would have taken that resignation. Even more, I would have fired any therapist not willing to work with Jani just because her parents might mention them in a blog or on Bipolar Nation Radio. I have never attacked any one in this blog personally and I have only discussed their actions relative to their professional conduct, which is not protected under privacy laws. Have I been wrong sometimes? You bet. I do not position this blog as the truth. The disclaimer above says it is based on my emotional response. This is my truth. And when I have been wrong, I have always and will continue to apologize, as I did to Dr. Fine and the Newhall School District.

 

My feeling, and this is just my feeling, is that if you are afraid that your work with Jani might become public, then you have something to hide. If you don’t have anything to hide, if you are confident and understanding, then you have nothing to worry about. But if I have to keep my mouth shut or else Jani won’t receive treatment, then I have no way to protect Jani, do I? I have no other way to alert other parents of mentally ill and autistic spectrum kids to what can and might be happening to their children. Your private life is private and off-limits to me but your public life is public. Hell, you can go to ratemyprofessor.com and read all about my professional life. Is it all accurate? No, of course not. Some students are going to give me a bad review simply because of the grade they earned in my class. But I still have to take it because I have no expectation of privacy as a teacher. Anything I say in my classes can go anywhere. Hell, everything I’ve ever written in this blog or my old blog has been dissected and picked apart. Criticism comes with the territory.

 

So part of me thinks that if you are not willing to work with a mentally ill child simply because your name might get mentioned in a public forum, then you are a coward and you don’t care enough about the children you work with to put your reputation on the line.

 

But I also understand that Dr. Levy can’t exactly fire and replace all fifty of his therapists, if for no other reason than it would interfere with the treatment of other children. I have yet to hear from anyone who is happy with the service they got from Child & Family but that doesn’t mean they aren’t out there. Maybe I am only hearing from the ones who had severely mentally ill kids like mine.

 

But like it or not, the paradigm is shifting. The days where therapists can sit in their offices and talk at their patients for an hour is coming to an end, for the simple fact it doesn’t work. Of course, this will probably cause the State to cut off all outpatient funding, which would be a mistake. Outpatient therapy works. It just needs to be expanded into the lives of those the therapist claims to want to help.

 

Jani has been out of the hospital now for four months, her longest stretch out of inpatient care since she first went to UCLA in January 2009. When I mentioned this to Dr. Levy, he asked me what I attributed this to. I think he was surprised that Jani didn’t nosedive back into the hospital after her therapy was cut off. However, no one is more surprised by that than me. But I sensed he wanted to know if I was trying to bend the facts a bit to make it look like Jani really didn’t need residential.

 

No. I don’t lie. Even when it gets me into trouble.

 

I told him that I feel part of it is that Jani is getting older. She is maturing and with that maturity she is learning to better manage her illness. Jani will tell us when the hallucinations are bothering us. She will even tell us when she needs an extra Thorazine. I think she is coming to a comfortable balance between her world and ours.

 

The second factor, I told him, is that we spend every day trying to get Jani the stimulation that will help distract her. She has horse therapy twice a week and afterward we both work scooping manure and cleaning out water troughs. She cooks with me (cooking class), where we make cakes, pies, homemade bread, and Jani’s completely homemade spaghetti sauce (we even mash up fresh tomatoes). I am teaching her the major scales on the piano. Basically, Jani is back to what she was like as a infant: needing constant stimulation.

 

It is exhausting, but we are doing it.

 

The only times we start to lose her is when I have to go teach.

 

So the answer, Mr. Levy, is two-fold: One, Jani is getting stronger and more mature.

 

And two….

 

We, her parents, are working our asses off.

 

 

[video:

100×100]

23 comments on “Just Follow Me (If You're Trying to Get Out)

  1. I am so glad you have connected with the Dr! I pray something positive will come out of this, especially as this is so public.

    You stated that schizophrenia cannot be cured. To this I would like to respond-
    Yet.
    Just as better and earlier observation has changed our knowledge of the facts of the child in the womb, so will our knowledge of this disease. The scientific community must stop thinking of psychiatry as some ethereal entity and viewing it as a physical anomaly as it truly is.
    Keep up the good work. The squeaky wheel gets the grease….

    Note from Michael: True. I just don’t like to talk about cures because at least with mental illness it encourages people to think that solving the problem is just a “quick fix” when it is a long term struggle.

  2. LOVE IT
    Michael, I don’t think I can even put into words how this blog made me feel. And then to see the song at the end, “Not Afraid,” was just incredible. I think the “real world” therapy sessions is an amazing idea!! And all the other forms of therapy, cooking, animal, art, etc., couldn’t agree more. I wish someone with REAL power would team up w/you and Susan b/c I’m certain you could make the world for the mentally ill a better and much more functional place.

    Note from Michael: That’s the hope.

  3. Re: Jani
    Happy to hear Jani is still improving. I’ve always suspected her intellectual powers would ultimately overcome the debilitating effects of her visions. Not completely, of course, but enough to allow her to function reasonably well in the real world.

  4. Congrats!
    Glad to hear that Jani has had some improvement managing her psychosis and has had such a long stretch without inpatient care.

    Keep up the great work, your obviously doing a fantastic job!

    Best wishes.

  5. “Parents resent the system because the system makes parents do it all on their own.”

    So fucking true, it makes my eyes bleed and my bones melt.

    Some of the people in our society are disposable. People who do not know the mental health system jump my ass for exaggerating about that at least a few times a week, but we who deal with it everyday know that it’s true.

    My kid is weird and confusing and unpredictable, and he is not disposable. Not for one instant of his life has he been disposable and when people cry about how day treatment and all the other things we need are expensive, I can only conclude that they think Carter isn’t worth it.

    What a terrible, terrible thing, to believe that some people are actually worth LESS than others.

    I’m very glad to hear that Jani is learning some new skills and doing better.

  6. Thank you for being a Voice
    I’m glad you’re not giving up because it’s people that are determined, like you, that end up making a difference. The Department of Mental Health & Dept. of Social Services is a joke (for lack of a better word). I’ve tried to get my mom some help through these public services & they don’t want to help or “discourage” continuing treatment and what you said is true, “people with mental illness can sense when other people don’t want to help them,” and that just isolates them even more.

    Frankly, it’s disturbing to me that these “professionals” are being paid (through our tax dollars) to help people with mental illness and they either don’t take their job seriously or just don’t care about helping their patients.

    Not to mention when you take your loved one to the hospital with a physical illness like a long-lasting flu or cough and they don’t take the mentally ill patient seriously because they look in their chart that they have a mental illness and give them less than adequate (or no) treatment! I mean, other illnesses like cancer & diabetes get taken seriously, mental illness is an illness too and it needs just as much respect as any other. The problem is that people associate mental illness with ‘behavior’ and I think that creates the stigma. By putting your story out there, you’ve made many more people aware and ‘educated’ them about what psychosis is. Thank you for being a voice.

    I understand your frustration and anyone that says you’re being too sensitive or critical, they obviously don’t have a mentally ill loved one in their family!

    Well, at least you have Susan to help you with Jani- I’m on my own trying to help my loved one with her psychosis because other family members simply ‘don’t care to help.’

    Note from Lulu: I know it is your mother and not your child, but you deal with the same system so I would like to invite you to our online support group for families with mentally ill children ( we do have some members with other family members who are mentally ill).

  7. An Insider’s View from a fellow SZ
    “This is why I have come to believe that for patients with psychotic illnesses, an hour or so a week of sitting in therapy talking is ineffective. This is not to say that it has no value at all. It’s value over the long term is that the psychotic child (or adult) can slowly develop a relationship with the therapist, and any relationship with a flesh and blood human helps to counteract the impact of the hallucinations.”

    Hi Michael, that’s great about Jani! Those therapy activities sound perfect for childhood SZ. Having dealt with having schizophrenia for 20 years I’ve learned some things about it. I would caution against making generalizations from Jani to adult SZ. The reason is her young age is naturally having an effect and causing problems that older SZs don’t have as much.

    I just spent an hour with my counselor. It’s incumbent for the adult SZ to make a list of problems or issues he has when he gets to the therapist. Then they can be aired out and analyzed. Maybe Jani can’t do this yet due to her young age. For adult SZs this should be sufficient to help them work through their current issues. In the end, we have to do as much as possible on our own and when we are alone. That’s the goal. So the adult SZ needs to be proactive in session and say what’s on his mind or what’s bothering him. The therapist can’t possibly follow me around enough to figure that out. That’s up to the SZ to speak up and say where he’s having problems. Also I should say that, from what I’ve seen, psychiatry doesn’t really have a systematic Talk Method for treating SZ. There is simply no such technique that’s been developed yet. So at best they try to help you work through your current problem and offer alternatives. But they don’t have a treatment agenda beyond that. So it’s imperative that Jani ultimately speaks up, and says how it’s bothering her, so they can help. But please understand, the professionals are flying by the seat of their pants and have very little understanding of what SZ is actually like and helped.

    Also I should add that many adult SZs I’ve met (like me) prefer and like being alone. It’s easier to cope when you can keep focused on the inside and don’t need to be talking to anyone. It’s just easier. So don’t be surprised if as she gets older she prefers more alone time.

    Anyway, it sounds like a solid plan. Good luck! GO JANI!!!

    ***For the legions of Jani Fans, click on my name above to go to her Youtube fan page***

    Note from Michael: We are different experiences. Even the adult SZ’s I know shouldn’t be alone. I would also caution you not to do what I often do and project your experience onto everybody else. Schizophrenia is different for everybody who has it. We both need to remember that. I don’t think it is a simple issue of maturity. I don’t think anyone should be left alone.


  8. Sorry if I offended you; I’m on your side. Just standard blog comment discussion. I wasn’t generalizing to the class of adult SZs who want company, of course it would be great if they had company. My subject was adult SZs who want, like, need, prefer, and are most happy being alone some or even a lot of the time. Their needs and coping wishes should be respected.

    My point was that advocating for adult SZs is completely different from advocating for early onset SZ. They are minors under the care and direction of a guardian who is in the decision making process, and the ideal is to keep them with their family.

    This is not true when advocating for adult SZs. For them being able to do as much as possible on their own and when they are alone. They are making their own decisions and the ideal is what we in New York call independent housing. But their are also group and residential options. That’s what’s best for the adult SZ and what their family wants as well for them (as opposed to living at home, they should have as much of a normal life as possible).

    So adult SZ advocacy is a completely different set of propositions and aims. For this an hour long session once/twice a month (unless they need residential) at the office is sufficient, and the main reason isn’t to make friends with the therapist but to get help with the problems they are having coping with SZ.

    Your plan sounds right for early onset SZ in minors, but when you then generalized to the adult population I saw a valid problem.

    Really dude, I just thought as a writer you were wanting to bounce your ideas off your readers, and I was just trying to help. Sorry if you took offense to my feedback.

    Note from Michael: No offense taken, Ken.

  9. Psychosis Description
    Your understanding and description of psychosis is remarkable. I wish that I could describe it in such terms on my own blog. I wish it reached a greater audience. Too many people believe that when an actively psychotic person self-harms or is violent…it is because they are angry or depressed or hateful. But it isn’t. It is because an irrational thought overrides all other thoughts. And not all psychotic people are dangerous. Refusing to get out of bed because you think that if you do then someone will come kill you is just as psychotic as harming others in an irrational attempt to protect yourself.

    I also really like your idea for improved therapy. I get talk-therapy once a week. Sometimes twice if its a really bad week. It has taken two years for me to learn enough mechanisms to manage the symptoms such as hallucinations and delusions. To learn how to ignore most hallucinations. To learn how to argue with myself until I recognize the illogical aspects of a delusion. It probably wouldn’t have taken that long if I had someone with me some of the times that I am paranoid or delusional or hallucinating to talk me through the process. Wow, that just really would be something amazing…amazing therapy.

    Note from Michael: Yep. If nothing else, what a person going through psychosis needs is understanding, the knowledge that no matter what you say or do, I am still going to be here for you.

    By the way, would you like me to add your blog to my “Ring of blogs” on my resources page?

  10. you keep mentioning about blue shield not working as they should and refusing people care.. apparently thats most insurance companys in the usa.. have you watched sicko? its on youtube thought it might be something youd be interested in watching

    Note from Michael: Yes, I have seen it and I agree. Insurance companies dictate care in America, not doctors.

  11. Parallel Dimensions?
    Thanks again for the invite. I really think that people like my mom and Jani are very special people. I like to maintain an open mind and I’ve thought of a number of things as to the cause of what we know as “psychosis.” I’ve thought perhaps a scientific explanation, genetics, your own biology, environmental factors, trauma, spiritual experiences/beings & other dimensions (or a combination of some or all of these factors).

    I believe and have faith in God. I’m not superstitious but I believe in possibilities that extend beyond what we know and see. I thought about Jani “seeing” numbers and hearing & seeing other things and I wonder about other dimensions existing that sometimes perhaps we (or they) cross into our dimension and only special people like my mom & Jani can see them.

    At any rate, I am constantly guilt-ridden because my mom lives in a 1 bedroom condo and I want her to live with me but it’s not easy because I live in a 1 bedroom apmt with my bf & currently can’t afford a 2 bedroom. It’s important to be there for our loved ones in these situations because they can become suicidal because they’re overwhelmed.

    Anyway, just some thoughts I wanted to share.

    Note from Michael: For me, what causes schizophrenia or psychosis is not as important as helping those who have it live happy lives. That is why I focus on the need for services rather than cures or what might be causing it. Who knows? It doesn’t really matter to me. What matters is we try to do the best we can to help those who have it live the lives they want to live.

    Also, don’t feel guilty. How do I put this… parents have a responsibility to their children, so those of us with mentally ill children must do whatever we can. When it is a parent that is mentally ill, there is only so much you as the child can do. I believe (and this is only my opinion) that parents should follow their children into the abyss, but children should not follow their parents into the abyss. I hope that makes some sort of sense.

  12. Jani
    Dear Michael, I saw the T.V. show about Jani and your family several months ago and have thought about Jani frequently ever since. I have a great deal of respect for you and your wife. I have two children of my own and one grandchild and I can not imagine what your go thru to provide your children with a healthy environment every second of every day. It’s too much. God bless all of you. I’m glad that Jani is doing better. She is an amazing little girl. I know that you love her very much…you are an outstanding father. Best of luck to you. Keep fighting.

    Ann

  13. It’s nice to see a post 🙂 Sometimes “no news is goods news” but one never knows.

    I love your idea of getting out of the office and into the real world. In the world of Autism, there is a program called “skills streaming” and you would start in a clinical type setting, but you start generalizing skills into the real world almost right away. What’s the point of having a skill in an office? Also, what a person does to handle a situation in an office is very different than how they might deal with it in the community…so…I agree; how can professionals help to guide you and Susan if they aren’t aware of what really happens?

    Now, I realize that it’s a bit different with a child who is hallucinating/doesn’t have a ton (if any) of control at that point…but I also think that another few programs could be mingled in with that.

    A SUDS Scale…the link gives a basic idea of what it is…
    http://en.wikipedia.org/wiki/Subjective_units_of_distress_scale

    So…the child/adult could help with the ratings…and then learn to recognize early stages perhaps? I don’t know. Is that possible? If so, once the person identifies that he or she is entering into psychosis – he or she could have a few strategies…if I am following you correctly, keeping Jani focused on other things helps keep her in reality…at least for a little bit? If that is the case, then there should be strategies that Jani could learn that might make her more self-sufficient at some point…and indeed, she would need those skills at the store, the park, and wherever. BRT (Behavioral Relation Training) is one of those strategies…and I bet there would be others too. Even if she would never be self-sufficient, you might end up with a strategy that more people could use…instead of having to rely on a select few people. You could train someone to intervene using a strategy as opposed to having people panic and back away from the situation because they feel helpless.

    Sometimes, when I am working with a difficult child whom staff are a bit scared of or just unsure of how to handle…training is half the battle. If I have a plan to follow, others feel better. They feel prepared. A therapist or psychologist, at the very least, should be able to help provide that for the child.

    I “googled” Behavioral Relaxation Training and psychosis and found only a few hits. This next link sort of makes me think that this is really an uncharted area (the second paragraph in “research summary” is what I am referring to), but there are professionals out there who want to dig into it.

    http://www.kennedykrieger.org/kki_staff.jsp?pid=2106

    I think you’re onto something.

  14. The Abyss
    Sorry I keep posting, but I want to say thank you for ‘asking’ me not to feel so guilty- I guess I need to hear that because I basically live with it and I’m terrified of losing her- she’s the only family member I’m close to and I don’t know how to “unattach” myself from her while continuing to help her, without being as affected as I am by all this.

    It’s interesting how you put it, “falling into the abyss” because that’s how it feels, like I’m falling with her and I don’t know how to get out. I feel like I’m losing the battle for her and now for me. I’ve had major depressive episodes, have constant bad dreams and have lost the desire (and trust) to be around people (I also have social anxiety).

    I had transferred to Cal State Northridge years ago and I dropped out because I started dealing with depression and I started realizing something was going on with my mom.

    At any rate, reading about and seeing videos of your family gives me some comfort because it reminds me I’m not so alone in this. I will continue to follow Jani’s (and your family’s) journey.

    God be with us in these difficult times and give us insight into how to help our loved ones and maintain our own strength.

    Note from Michael: Post as often as you like. This website is here for you as well. And you if you ever decide to come back to CSUN, look me up. I’m still there.

  15. Role of nurses?
    Not only am I a parent with a mentally ill son (aspberger’s, OCD, and bi-polar) I am also a nurse working in the mental health field. I was in the position 2 years after my husband (children’s father) died of having to chose to place my daughter with my parents or hospitalizing my son for violence. I am very interested in the changes in the health care system that you are proposing. My question is if you are envisioning a change in the services that nurses provide in providing care for mentally ill children or how you think nursing might help to fill the gap?

    Note from Michael: Hi, Misty. My primary focus has been on outpatient care, but I appreciate you wanting to know if there is anything more nurses can do. Nurses are the frontline of inpatient care and are probably the most critical aspect of inpatient care, because they have such a complex role as both the eyes and ears of doctors and the primary persons engaging with mentally ill kids and adolescents on the unit. I have seen really great nurses and not so great nurses. What separates them is first and foremost a real enjoyment of their time with the mentally ill kids/adolescents. There is so much a nurse has to do but what makes the nurses at UCLA Resnick generally so good is that they don’t spend their time in the nursing station, filling out paperwork. They are out on the unit, interacting with the kids, playing with them, talking with them, playing games, etc. This is very reassuring to me as a parent because I need to feel like you care about my child and that my child is safe in your hands. Bed checks and vitals are not enough. The nurses have to interact with the kids and generally (at least at UCLA) they do. My second suggestion would be to keep meticulous nursing notes of patient behavior and especially “incidents” on the unit. In December I will be speaking to the California Hospital Association and one of my recommendations will be to speed up the process of digitizing notes. I see nurses have to deal with cumbersome binders. No wonder things get left out. It must be a pain to have to search through for meds given, med reactions, patient behavior, etc. If all psych notes are digitized it would be much easier to enter information and I believe more information would be entered so the doctors would have a more realistic idea of what the patient is doing.

    Also, Misty, if you are interested in joining our private online support group for parents of mentally ill kids, here is the link: http://health.groups.yahoo.com/group/parental-support/

  16. A New Paradigm
    Hi Michael,

    I’ve been reading your blog for a long time. Jani is just the most beautiful and intelligent and creative and brave child, and you and Susan’s courage in keeping her out of an RTC is amazing.

    I was diagnosed with a psychotic illness at age 17 after having psychosis since at least age 13. My parents hospitalized me in the crisis part of the Cleo Wallace in Westminster, CO. While some good people did work there, and while I got better there, I also experienced and witnessed abusive and manipulative behavior from the staff toward the clients. Can you please, please tell me what sort of human being gets a kick out of lording their “power” over a psychotic child? And of course, as you pointed out the focus was on behavior “therapy” (i.e. punishing people for having a mental illness) with staff not seeming to realize that we were “acting out” not out of a desire to irritate them but out of terrors that they were too naiive to comprehend.

    Point being, RTCs are needed sometimes, but I doubt that is the place for a child as young, ill, and sensitive as Jani.

    I am 24 now. I am in a program called Colorado Recovery that focuses on keeping young adults with psychotic disorders out of the hospital and returned to the highest level of functioning possible. It consistes of groups, therapy, medication managment, a house for people in the program to stay when needed as an alternative to hospitalization. So what I do right now is I live at my own house, but come there for meals, activities, groups, or just to hang out. There are always several volunteers/trained staff around, homecooked meals twice a day (the residents help with cooking) and outings to the rec center, restraunts, movies, etc. It is run by a psychiatrist called Dr. Richard Warner who is a well-known schizophrenia expert. People come from all over the US to be part of the program. I am telling you about Colorado Recovery (google it, it has a website) because it sounds like something that would be helpful to start, if funding can be obtained, for kids like Jani–a cross between drop-in center, halfway house (as needed) and second home full of children/adolecents who are going through the same thing.

    Be Well

  17. do you use volunteers?
    hello, my heart goes out to jani (i ditto the person who called her ‘beautiful, brilliant, creative’) and to your family, for all you go through. i have read most of your blog and really admire the difficult decisions that you make. i know that jani’s illness is best managed by you, really…your style of stimulation for her, and your connection with her…but i do wonder if you have ever had people come to your home to provide some respite stimulation for her. i imagine that there are people who have an interest in the mental health field, and/or just feel for your family, who would be happy to be of SOME assistance to you. there really are alot of volunteer’s hearts out there. if i were in california, i would offer to just come wash your dishes, for example. i don’t know how jani would respond to other folks in your home/in the park with you…but i just liked the idea of you getting some support, (even if you still are having to be in the next room.), especially with the high-energy stimulation that seems to be mostly up to you. i have thoughts about how you could have a volunteer group to help you… is this anything you are already doing?

    Note from Michael: Yes, we have two people who help us out when they can. One watches Jani and the other watches Bodhi so Susan and I can do our weekly radio show, but that is really it. We used to have college interns but the professor terminated the program due to safety concerns (because Jani can be violent). Since then we have been reluctant to let new people in because we don’t want to destabilize Jani by encouraging her relationships with people who are going to leave.

  18. therapy
    Dear Michael,

    I saw a rerun of Jani’s story tonight on cable. I found your website and find it very interesting. I have not read it all, by far, but one thing caught my attention. You commented how talk therapy has little benefit for someone with a psychotic disorder. I agree, in part. Many models of talk therapy would be limited by definition. I have been both a patient for much of my life (off and on, with some helpful, and not helpful, therapists), and am now a therapist. Currently, I work with one whom is trained psychoanalytically. I would not dare imply that this holds true in every situation, nor would I imply that all diagnoses would have the same benefit. I DO believe that, at least the way my current therapist works, that there is much more room for dealing with the process, and not the behavioral focus, although I see how, even within any given struggle, there are choices we face daily. Over the years, I have had many people refer me on, give up, hospitalize me, refuse to work with me, etc., all based upon the idea that my condition was too difficult. Bill (my current therapist) has focused upon my strengths from day one. He has always held a high regard for my ability to struggle through, and now, come out stronger in the broken places. In the two years I have worked with him, I have gone from being in and out of the hospital and on (at one time) 5 different medications, to now- only using medication to help me sleep (although it has limited benefit), returning to work, getting involved in Tae Kwon Do (after a 2 year self-imposed separation from most of society-only interacting when I had to) where I am preparing to test for my 4th level (green) belt. I can be in a large group of people and feel they truly want me there and see me as capable, after having so many people tell me I have to make plans for WHEN I have to go back to the hospital. I only reached that point with a therapist whose “talk therapy” enables me to say whatever I need to describe what I am feeling and thinking, and not pathologize it, rather hear the meaning of my words.
    I also volunteer on a crisis line now. I recently spoke to a woman who described her talking to me as meaningless because in reality, she is dead. I pursued that thought, and ultimately, she described feeling the person she was is no longer alive, and she takes medication that leaves her feeling dead, and that she can never be her “true” self again. In taking time to listen, I was able to bypass the “thought disorder” of “I am actually dead and you just think you are talking to me,” to hearing the pain of her deeper experience. Did I make her less schizophrenic? No, but she was able to have someone hear her message and feel more meaningful, at least in that moment. That is an example of how I think “talk therapy” can benefit anyone.
    I hope this finds you well, and hope that you continue to find ways to hope and believe as you and your family continue on this difficult, yet ultimately, worthwhile journey.

    Be well.

    Note from Michael: You are absolutely right and bring up something I missed in my own criticism of talk therapy. Too many therapists pathologize and focus on negative behaviors rather than on strengths. Talk therapy works if you give the patient/child confidence. Most therapists look for problems, though, not solutions.

  19. Your Book about Jani
    Hi,

    I came upon your book “January First…” only this year on my Kindle and once I started reading it, I could not stop. It is an amazingly honest account from a father who is trying to save his beloved child. It is also a lot more; it gives an insight into the difficulties experienced by the entire family when a child’s mental health deteriorates so drastically. I had honestly never heard before of a child of five being diagnosed with Schitzophrenia and it shocked me. Since reading it, I have recommended it to the families on my email list (I run a support organiszation for families of children with ADHD, ASC, Dyslexia and other learning disorders). From time to time, I hear about children who are terribly aggressive from a very young age, far beyond what one would expect from children with the afore mentiioned conditions and my thoughts go to Early Onset Bipolar; now, I realise that we cannot rule out Schitzophrenia either. We try to give parents the support, resources, training and evidenced-based information about the various conditions, but are always aware that we do not know everything about what can affect children at a young age. In other words, we are always learning.

    What you have done in writing about Jani’s illness is spread awareness about the condition because of course there are other children out there whose parents have no diagnosis yet who are probably not receiving the help and support that they need for their children in a very difficult time. If they read your book, they will realise that they are not alone, and it might motivate them to be more aggressive in finding medical solutions. Your book will also give encouragement and hope to these families who are very often living in isolation .

    I logged onto your website today and was interested to see some of your blogs since the book was published. I was glad to have the opportunity to leave this message.

    Keep strong and do not stop believing that Jani will one day be in a better state of mind. She has wonderful parents and that counts for a lot .

    Joanne

Leave a Reply

Your email address will not be published. Required fields are marked *