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The Cause

 The following is the new “Our Cause” page. I am putting it up here as well. I know I haven’t updated on Jani for awhile. I promise I will write a new real blog in a few days. But remember this isn’t a blog just about Jani. This is a blog about life with mental illness. And I am not going to just complain. I am going to do something about it.


Manifesto of The Jani Foundation

 

 

The purpose of the Jani Foundation is to improve the quality of life for children with mental illness and their families/caregivers. Primarily, the focus of the Jani Foundation is on aiding children with mental illness that includes some inclusion of psychosis, be it schizophrenia, psychosis NOS (not other specified), bipolar with psychotic features, or a child exhibiting symptoms such as delusional/paranoid thinking, hearing “voices,” (“commanding” or otherwise), consistent engagement with or fear of individuals only the child can see, or violence that does not appear to have an “external” trigger.

 

Education:

 

The Jani Foundation believes that all mental illness is BIOLOGICAL in origin. We reject the idea that psychotic illness can be “created” by any external forces. Although we acknowledge that psychological trauma can exacerbate psychosis, IT CAN NOT CAUSE IT. We believe this for the simple fact that if trauma caused psychosis, all humans would suffer from psychosis. Unfortunately, we all experience psychological trauma. It is part of the human condition. By the simply being alive and having to interact with the environment, a person will get psychologically hurt. The fundamental flaw with the trauma-based or “environmental” model of the development of psychosis is that if indeed the human mind was that fragile our species simply would not have survived to the present day. Such a glaring weakness in our psychological composition would have led to our extinction long ago. Our ancestors faced trauma on a daily basis and yet our social development has continued.

 

Therefore, psychological trauma, no matter how severe, does not cause psychosis. You cannot induce or create psychosis in an individual, any more than you can induce or create cancer.

 

But wait a minute, you say: many external factors cause cancer.

 

No, they don’t. Yes, smoking, exposure to asbestos or other chemical poisons, or radiation CAN increase the risk of cancer. But there are those who smoke for years and never develop lung cancer. Likewise, there are those who never smoke a cigarette in their life but still develop lung cancer.

 

This is because what ultimately decides our susceptibility to cancer is our genetics, whether or not we have a genetic “predisposition” to cancer already contained within our DNA.

 

So it is with mental illness. Just as with cancer science has not been able to establish an ironclad connection between cancer and genetics, science has yet to establish such an ironclad connection between genetics and mental illness. We have mapped the human genome, but that is only the beginning. We still do not know what many genes do. We understand only the basic function of most, and even that is mostly an educated guess.  It may be decades before we understand how the sequencing of the genetic code can produce mental illness This is further complicated by the fact current genetic research is showing that predisposition to certain illnesses is likely not the result of a single gene but is probably caused by multiple genetic combinations, perhaps number in the hundreds or thousands. However, just as having the presence of a type of cancer in one’s family background increases your risk of that type of cancer, there is sufficient evidence that having the presence of mental illness if one’s family history dramatically increases the chances of one’s child or children having a mental illness as well.

 

Then there is our limited knowledge of the brain. Neuro-science, compared to other fields of medicine, is still in its infancy, due to fact that the technology that allows us to understand how the brain functions (such as the dopamine receptors in the brain) is relatively new, and because that technology is massively expensive and insurance companies often won’t pay for a single MRI, let alone multiple MRIs taken over a period of years.

 

Purpose of advocating for the biological model of mental illness:

 

  1. To improve development of medications that can target specific areas of the brain that are not functioning properly.
  2. To provide further evidence to eliminate “behavioral treatment plans” which essentially treat mentally ill children and particularly mentally ill adolescents as “bad kids.” There is a biological reason for their anti-social behavior. Mentally ill children and adolescents are well aware of what the consequences of their actions are. Yet they persist in their behavior. Doing something that one knows will result in punishment or the loss of privileges and doing it anyway is the very definition of “insanity” (which is a legal term, not a medical one). It is not in our nature to seek pain. It is in our nature to make our lives as easy as possible. A child or adolescent who continually “acts up” despite awareness of consequences does so because he or she CANNOT control their behavior. Behavior must be “redirected,” which means getting the child to focus on something else, something positive, rather than punished. All punishment teaches mentally ill kids is that “we,” the rest of the society, cannot be trusted.
  3. To end the blaming of parents for the child’s mental illness. Parents love their children no matter what, but often find themselves the target of social services when they seek help. To often this leads to increased stress and dissolution of the family unit. We believe that the family unit is a mentally ill child’s best chance to reach his or her full potential.

 

Educating the public that mental illness in children is not a new phenomenon:

 

The diagnosing of children with severe mental illnesses like bipolar and schizophrenia is nothing new. It SEEMS new only because of “deinstitutionalization,” the process of closing state run mental hospitals that began in the late 1960s and continued through to the late 1990s. Had she been born in the 1960s, Jani would have been placed in the “Back Ward” at Camarillo State Hospital in Camarillo, Caifornia, the ward reserved for the most severe cases that could not function outside the hospital. I know this because I have met several nurses and social workers who worked there decades ago. There were children as young as twelve inside Camarillo State. When Governor Pete Wilson ordered Camarillo closed in 1997, most of the 300 remaining patients were under age 18, of whom most ended up in “group homes” scattered around Los Angeles County.

 

However, the Jani Foundation does not support “re-institutionalization.” We do advocate for the building of more inpatient hospital units for children, more beds in units that already exist, the separation of children and adolescents (as most hospital psychiatric units combine both children AND adolescents), and the development of psychiatric emergency rooms.

 

We support the continuation of the current system of hospitals serving as “acute” treatment centers only. However, insurance company “doctors” who have never seen the patient currently have the ability to deny payment for continued days. This process must end. The treating facility and the treating facility alone must be the ones who determine how long a stay is needed to stabilize a child dealing with psychosis, not insurance companies. The Jani Foundation supports the enforcement of “parity laws” which were designed to force insurers to treat mental illness the same way they treat physical illness.

 

Call to Action:

 

  1. A federal law must be passed that prevents insurance companies from overriding the input of the treating physician.
  2. Such a law must prevent insurance companies from dropping coverage on children with mental illness or reducing mental health benefits. All mental health benefits should be unlimited (unlimited inpatient days and unlimited outpatient psychiatric and therapy visits).

 

 

Generally, the Jani Foundation opposes sending mentally ill kids to “residential treatment centers” and is completely opposed to sending them to “group homes.” First, this does not help mentally ill children integrate into society. Failure to learn to function with their mental illness in society can lead from residential straight to jail.

 

First and foremost, we believe the family of the child is the best environment for the child. Therefore, it becomes our responsibility as fellow citizens to ensure the child and family have the support they need.

 

If residential becomes necessary, we will only support and recommend those residential treatment facilities that have the following:

 

  1. The staff must be psychiatric nurses, because they have experience and knowledge with the medical needs of these children and the potential side effects of the medications. Most facilities do not have a nurse available 24 hours a day, 365 days a year. This is shocking.
  2. There is a psychiatrist on call at all times.
  3. The facility can deal with medical problems. This means there must be a medical doctor on call at all times.
  4. The facility uses positive reinforcement of behavior ONLY. We oppose the use of restraints, mechanical or otherwise. We also oppose any facility that “locks” a child away, alone. If a child is psychotic, the worst thing you can ever do is leave them alone with their own mind. They are human beings. Talk to them. Play with them.
  5. The facility believes in the biological model of mental illness
  6. The facility encourages parental involvement.
  7. The facility encourages interaction between the children/adolescents and the community. These places are not meant to be prisons.

 

 

Call to Action:

 

  1. Child Protective Services needs to be checking up on the welfare of mentally ill children and adolescents inside residential facilities. Abuses must be investigated.
  2. All employees of residential treatment facilities must be trained in the nature of psychosis and how to appropriately deal with it. Outside of nursing, advanced degrees in medicine, psychology, physical and recreational therapy, and education should be required.

 

 

Current Failures of Mental Health Care as We See It:

 

There is a six-prong failure of the current mental health care system in the United States. They are:

 

  1. Lack of government funding:

 

This lack of funding predates the current economic problems in the United States. Taxpayers seem perfectly to let their money be used by state governments to hire private companies to build more prisons, but they don’t want to spend the money on services which would eliminate the need for increased numbers of prisons, as well as being less expensive in the long run. Currently, the California Department of Corrections is the largest provider of mental health services in the WORLD. Because of failures to fund local preventative services, many mentally ill individuals do not receive mental health care until they commit a crime.

 

The Jani Foundation does not support either Republicans or Democrats. This has nothing to do with 501c3 rules against political support of candidates because we are not, as yet, a 501c3. Rather, it is because neither party gives a damn about mental health, either for children or adults. Pushing for increased funding for mental health services is not politically popular. It is easier to generate a sound bite about being “tough on crime” than push for local and state mental health care services. Even though a mentally ill young man very nearly killed one of their own (US Representative Gabrielle Giffords), Congress still doesn’t seem to care, perhaps because it doesn’t affect their children. The other issues is that there is no “quick fix” for mental illness. These illnesses are lifetime illness and the truth is we must support these children and their families FOR LIFE.

 

  1. This lack of funding for existing services like California’s “AB3632” law that requires school districts to provide mental health services to students means that state and local agencies participate in what we call “the politics of exclusion.” Rather than the goal being to provide services to as many people as possible, the goal of these state agencies (like the Department of Mental Health, Regional Centers, and contracted private non-profit agencies like the Santa Clarita Child & Family Center) is find any excuse they can to DENY services in order to preserve their meager budget.
  2. What money does trickle down to these agencies is wasted by a bloated and uneducated bureaucracy. For example, absolutely no one at the Los Angeles County Department of Mental Health has any experience with severe psychosis, either in children or adults. These workers are bureaucrats who push papers and list rules, not provide real help. What these agencies need are not Masters’ of Public Administration. They need psychiatrists and psychologists trained in dealing with psychosis.
  3. The “services” that exist are designed for the short-term, not long term support. Services like “WrapAround,” are designed to “teach” parents how to “handle” their children, ironic considering that we have yet to meet a Wraparound worker with any experience in dealing with psychosis. Wraparound is a short-term, behavior modification based program designed to teach parents how to be parents. What parents of mentally ill children need is respite care (which state workers experienced with psychosis), financial support (as gradually taking care of a mentally ill child erodes one’s ability to work, unless the child is sent to residential care), and access to therapies that will help their mentally ill child, such as animal therapy, equine therapy, art therapy, recreational (play) therapy, occupational therapy, and social/peer groups (as mentally ill kids feel more secure when they are with others who “get” them). Mental illness is a life-long affliction and the Federal, State, and Local governments must realize that a “band-aid” solution of sending out a recent college graduate in psychology to judge your parenting will not prevent the alienation of mentally ill children in our society.
  4. The reintegration of psychiatry and psychology: Ironically, psychology was born from medicine. Freud was an MD. Yet as the 20th Century progressed, psychology moved further and further away from the science that gave birth to it. Modern psychology has become a joke, based more on “pop-culture” psychology than real clinical research. This leads to such ridiculous things as social workers and psychologists accusing a parent of a mentally ill child of “Munchausen By Proxy,” or the manufacture of a mental illness in their child to get attention. If psychologists had more medical knowledge or were actually required to do real clinical research for their degrees, they would know that has NEVER BEEN a confirmed case of a parent “causing” a mental illness. Munchausen By Proxy is a term used by forensic psychologists to describe parents who caused a PHYSICAL ILLNESS in their child during a criminal trial for murder, attempted murder, or child abuse. This is an example of “pop psychology” being applied in situations where it is not appropriate and since CPS social workers can remove a child from a parent without needing to show “just cause” (the only aspect of the criminal justice system that can do this), families get broken up.

 

The Jani Foundation advocates the termination of the “Marriage and Family Therapist” degree and the elimination of psychology as a separate area of study from medicine. We propose that psychologists and psychiatrists be educated together, leading to the eventual end of psychology as a separate field from psychiatry and the reintegration of the two sciences back together.. Honestly, the best therapist we know is our psychiatrist. She works more like a therapist, talking to Jani and to us, getting to know us, and not just prescribing medication in 15 minute sessions.

 

  1. The failure of current non-profit organizations focused on mental illness.

When NAMI was formed in 1979, the landscape of mental health care in America was very different. State hospitals still existed and long term care was available. Services existed then that do not exist now. Therefore, NAMI’s focus became education about mental illness and the fighting of stigma. But what good is educating parents about mental illness IF THERE ARE NO SERVICES AVAILABLE TO HELP THEM. It is like being told you are going to die but not how to save your life. The Jani Foundation opposes donations to NAMI, The Child & Adolescent Bipolar Foundation, Autism Speaks, and any other organization that does not provide DIRECT SUPPORT to families dealing with mental illness. Families with mentally ill children need real services like respite care and financial support to keep a roof over their heads and food on the table. Our children require full time care. They must be watched all the time. That makes it difficult to work a full time job. I understand that the need is greater than what any non-profit can provide, but as long as the government fails to provide real help, the non-profits must. And if they don’t, they shouldn’t be begging for money to survive. Susan and I pay out of our own pocket every month now to help out other families with mentally ill children and we don’t have the pharmaceutical industry funding us or a $250,000 Pepsi Refresh Grant or a portion of sales at Toys ‘R Us (NAMI, CABF, and Autism Speaks, respectively).  If these organizations feel all they can do is “educate,” fine, but they don’t need a ton of money to do that. The money is needed for providing real tangible help to mentally ill children and their families in need.

 

Soon, we will be setting up a financial co-operative between parents of mentally ill children. Everybody pays in when they can and if you need the money to pay bills all you need to do is ask.

 

If you want to donate, make sure your money is really going to a family who needs it, not to pay the overhead of a bloated non-profit so they can make a “video” or write up a pamphlet. You can visit www.facebook.com/janifoundation to see the families in need. Even if you can’t give money, come visit. Come see what families with mentally ill children are really dealing with.

 

And ask yourself why they come to two parents instead of to an organization like NAMI.

 

 

This is who we are. This is who we will always be. We will always be parents of a mentally ill child (or children). If you are ready to fight, if you are ready to commit to a war that will never end, come join us.

 

I can guarantee you, when you see a mentally ill child smile, it makes it all worth it.

19 comments on “The Cause

  1. Agree completely with everything you’ve written. Btw, i think you missed out a word in this sentence: ” Taxpayers seem perfectly to let their money be used by state governments…”

    I’m assuming you meant to write “perfectly willing” or something along those lines. 🙂

    Note from Michael: Thanks. That is what I get for not editing. I will fix that.

  2. psychosis
    I know you said that we cannot cause psychois, and I originally thought that, but what about prisoners who live in solitary confinement. Not all, but most who have been there for 5 years or more develop some form of psychois, even those who know history of any mental illnesses
    I know some may still say it is biological, but that would mean saying that being a criminal is biological and those with psychosis are more likely to be a criminal, which I do not think this is the case.
    I just thought i’d share this. I found it interesting. I’m not saying in any way shape or form that the environment caused Jani’s illness, beacuse i do also beleive it to be genetic. But it just goes to show how complicated this matter really is.

    Note from Michael: Interesting point, but I don’t think that what develops in solitary confinement is truly psychosis in the medical sense. First, bring in the “hole” as they call it “breaks” them, while someone who was truly psychotic would not necessarily have that reaction (as they would not be “alone” if you will). But even if long term isolation led to psychosis (and there is no evidence to suggest that it does-in cases where it does it appears to be isolated), that psychosis is temporary and will wear off once the prisoner is released from solitary while true psychosis remains indefinitely.

    And yes, I do think that being a criminal is biological, although there are often environmental factors that contribute. How else do you explain two kids who grow up in the same environment. One studies hard and makes it to college while the other ends up with a gang and in prison?

  3. Psychosis/The Cause
    The biological model of psychosis does not exclude the possibility that anyone can experience a state of legitimate psychosis at some point in their life. Mental health is a vast spectrum and while individuals with certain identifiable mental illnesses may be always psychotic, else triggered to psychosis by everyday phenomena, during periods of extreme stress or seemingly at random, the observation that environment can to varying degrees exacerbate a given individual’s condition allows for the possibility that we are all, at varying extremes, susceptible.

    What a mouthful… In the same vein as the argument that a sufficiently high or prolonged dose of radiation will almost certainly cause cancer in just about any person, extreme and prolonged psychological trauma could understandably trigger a state of psychosis in an otherwise stable mind. It’s just not the sort of thing you can set up a clinical trial to demonstrate.

    I’ve experienced two periods of psychosis in my life. One was following a pregnancy that did not end well. I was depressed and severely traumatized, but it went much deeper than that. In retrospect, I was not sane, but the dark, horrible thoughts in my head at that time were so completely logical to me at the time that I freely expressed them.

    The second time was some 5 years later when I was put on a certain medication to treat the symptoms of the neuropathy (off label use). Interesting side effects of this medication (for me, not according to any warnings) included auditory hallucinations, tactile hallucinations, and intense euphoria ~3 hours following my 4x daily dose. I knew this feeling, but it didn’t click that anything was wrong until I decided to cut one of my fingers off because I ought to be able to count to six on one hand – on the one with a missing finger.

    I know, I know. But it made perfect sense at the time.

    (It wasn’t the least bit funny, but I’d rather poke fun at it than relive it seriously.)

    Mental illness (everything from depression to Tourette’s) runs deep in my family. I am no exception (bipolar, officially, with the above “isolated episodes” duly noted). As the mother of a child whose mind is like a minefield with everything from confetti poppers to nuclear bombs beneath the surface, and another who is neurotypical by all accounts, I’ve witnessed both the hit-and-miss hereditary and environmental factors at play time and time again.

    If one of them ought to be “messed up” for growing up in a traumatic environment, it’s the one who’s normal – the one who’s borne witness to his brother’s self-injurious meltdowns countless times and whose parents have had to too often devote a decidedly unfair amount of attention to his sibling when he is just as deserving.

    I love my children dearly and wouldn’t trade them for the world (the meltdowns can go – just not my boy), but I look back sometimes and wonder if I would have had rolled the dice at all, so to speak, had I had an idea what was in me to be passed on before I’d had them. When it became apparent, I stopped despite wanting another child, but I couldn’t imagine life without children. They are my life. They keep me going, even when they’re the reason I’m sometimes so worn out and beat down that I have no idea how to do that anymore.

    My oldest son’s condition is officially diagnosed as PDD-NOS, and there are definite autistic traits in there, but subtract the self-injury (keep the raging, scream-till-your-voice-is-gone tantrums) and he is very much like I was as a child. He’s surprisingly happy most of the time, but my husband and I traded off on suicide watch for most of the 7th year of his life, and for what happiness he has or will missed out on in life, it’s unquestionably my lousy genes that did this to him.

    I was considered an inexplicably rotten brat and my mother’s family still rides me about it, if they talk to me at all. The general consensus seems to be that I’m a horrible parent with a child ten times as bad as I was. There’s just “no reason” for how he can be “so normal” most of the time and then “suddenly snap.” If I didn’t give him the attention he was seeking, he’d stop.

    Because he’d eventually knock himself unconscious or kill himself.

    The world has a long way to go before these attitudes will be a thing of the past. Unfortunately, it’s exceedingly difficult to reason a person out of beliefs they didn’t reason themselves into to begin with.

  4. Psychosis in C-PTSD as a direct result of trauma?
    Schizophrenia, no. That’s a genetic illness. But CPTSD can cause psychosis, and CPTSD is caused only be excessive, long term trauma.

  5. Criminal being biological
    Two kids growing up in the same environment still have many variables. Favoratism, abuse outside or inside the family which one child is subjected to but not the other. Different temperaments (yes, that part may be biological), different parenting styles with different kids, the list goes on.
    Certainly I think *some* criminals are born, but I’d be extremely surprised if all were.
    Following on from my previous statement, a psychiatric injury such as CPTSD, or even PTSD, will not disappear upon removal of the external trigger which is causing psychosis. That is to say, people will likely still suffer periodic psychosis, depression, anxiety, losing touch with reality, and social impairment, often for the remainder of their lives. And once someone has a psychosis of any description, they will forever be susceptible to further psychosis.
    CPTSD psychosis presents in exactly the same way as any psychosis. That’s why people with this illness are misdiagnosed so frequently. (Most often with bipolar).

    Note from Michael: I see your point, and why you would differentiate between schizophrenia and some other occurrences of psychosis.

  6. I should add…
    I never actually got around to harming myself, thank God. It became apparent to me after a few minutes that 5-1=4, not 6, and that was not helpful. As the peak high of the medication (gabapentin) wore off, I had a very sober moment (of complete horror and panic). I stopped taking the meds and called my doctor. He sent me to the ER. Long story short, all is back to “normal,” as we define it here.

  7. Your child is not Schizophrenic
    Your child looks more like she has autism or asperger’s to me.

    Note from Michael: And you are? Clearly, you must be important because “Your child is not schizophrenic” sounds like a pronouncement, something that God might say. Are you God?

    No?

    Psychic then?

    No.

    Then you don’t know, do you?

  8. Anonymous
    Do any of you people think for a single second, that the Shofield’s have heard exactly what you just said, a million times?

    For God’s Sake. If a child is diagnosed by professionals as having an illness (however rare), why is it so damn hard for people to just ACCEPT that. It baffles me.

    You people need our health care system. (Australia). I can’t believe what people go through in the U.S. A guy on FB told me he had concussion but no money to go to ER? WTF? How can that be possible?

    I vote we all write to Oprah and ask for help. And if not help, a damn good explanation as to why she can’t help. Personally I think she fails to see the bigger picture, opting for her own self gratification here and now.

  9. Is it just Biological?
    I agree with you partially on that. Although I do believe that it can be purely biological with no external triggers, such as with Jani, who apparently was born with it, I believe that certain traumatic experiences in one’s life can trigger the mind to “fracture,” if you will. Yes, there are those who have gone through extensive trauma and never develop a psychosis but others will- I think in some individuals, perhaps the mind is weaker and unable to adequately cope with the trauma and so it ‘breaks’ and psychosis develops.

    I also believe we’re more than just flesh & bones- I think your spirit can also break.

    And what about veterans who have fought in war and ‘develop’ PTSD, depression, psychosis, or some other form of mental illness- that’s proof right there that it’s not just biological. I think that emotional or external trauma can perhaps affect the biology of the brain and make it go haywire. But it will not affect everyone the same because everyone is different- some people are perhaps biologically stronger than others, etc. Just like your example about cancer, some people get it for no apparent reason, other’s do- it could be weak DNA, a virus we don’t know about, or a combination of factors.

    There are other factors that need to be considered, such as family history, environmental and spiritual or crossing dimensions. I don’t necessarily believe the last two are the case but I’m open to the possibility- just because WE don’t see something doesn’t mean it’s not there. I mean, as humans we generally only have 5 senses but it doesn’t mean there aren’t more because we’re limited as humans. Do you know what I mean? There’s just so many things we don’t know.

    On another note, I believe there’s a cure for every disease, be it physical or mental, but we’ve only found cures for some. Just because we haven’t found a cure for a disease doesn’t mean it isn’t out there.

    I think you’re absolutely doing the right thing by just trying to give Jani a good life. That’s what I’m trying to do with my mom who hears voices pretty much all the time- just trying to do things to make her happy, even if she’s negative and upset a lot of times but I don’t blame her- who wouldn’t be. I just love her and she knows I’m there for her. It’s just harder because she will not accept meds or even see a Psych. At least with Jani, she’s a child and you can make her take her meds.

    Note from Michael: I do think in some ways caring for an adult with psychosis is more difficult. All of us parents live in fear of the day when our children turn 18 and have the legal right to stop taking their meds if they want to. I do think biology is the primary driving force, but I think you are right. If there a biological propensity to it then an external force can trigger it. And I also agree that they could indeed be seeing something that is “real” but their minds can’t process it. If “it” didn’t try to kill them then I would be okay with it. It’s about keeping mentally ill safe and giving them every opportunity that the rest of us have. We have to as a society stop thinking that we need to get through life alone. We need each other. Humans are social. We are pack animals. We need each other.

  10. Go Simone!
    I actually did that very thing when I first began reading this blog. I wrote to Oprah’s show stating how irreprehensible it was for her to use these people for her own ratings & gain yet not offer financial help of which she is vastly, unfathomly more capable of doing…… no response….of course not….. but maybe if more people wrote—
    Anonymous = ignorant

  11. The Pack
    I agree with you, we need each other but unfortunately that’s not the society we live in. People avoid other people for a variety of reasons and in turn you become isolated.

    And if you’re a nice person, people either think you’re being fake or they take it as a weakness and try to bring you down, or perhaps they’re just hateful.

    I’m glad you’ve created this vlog because some of us have lost touch with society and just by communicating through a vlog, we can exchange some degree of support- just knowing there are others out there in somewhat similar circumstances.

    I don’t have children but I felt a connection to your situation with Jani because I deal with mental illness with my loved one (and I’ve developed a serious mood disorder & GAD) and as caregivers we share the same kind of emotional pain & frustration that others just don’t understand. It completely disrupts your life.

    It’s funny I had transferred to CSUN years ago as a junior from my junior college with good grades & I barely got through the first semester with passing grades at CSUN. But I don’t regret dropping out because my mind just wasn’t in it anymore- I listened to my gut that there was something seriously wrong with my family member and I just couldn’t focus anymore.

    Therefore, I also think you’re doing the right thing by cutting your hours at work to take care of your daughter because that’s where your heart is and you know you’re doing the right thing by being there for her- that’s being a good dad and human being and I strongly believe that for those of us who care, it will pay off in the end.

    I understand your frustration in having to pretend to communicate with 24 hours & then reaching your boiling point & yelling “it’s not real!” I deal with the same thing when mine talks about her conversations/experiences with certain spirits (and sometimes it gets scary) & I abruptly cut her off because to be quite frank it’s affected me quite significantly- I have nightmares, insomnia, extreme fatigue, panic attacks. I have to take benzos in order to function in public whenever I have to go out. I’ve basically become low-functionning (except for 2 days a week that I go help her) and very sui****l to the point where I’ve become quite transfixed with the prospect of ‘passing,’ if you know what I mean- I won’t elaborate further (But that’s just me and I don’t encourage others in that sense)- It’s okay if you don’t want to post this part, I understand.

    Note from Michael: Your feelings aren’t that unusual. I think all of us who are caregivers have death fantasies, only because we are so tired and that is the ultimate sleep. We know we will never really be able to rest until we are dead. That is what people don’t understand. And therefore death is something that doesn’t scare us and we get into moments where we are counting the years or hoping some disease takes us.

  12. Day Treatment
    Day treatment programs. My God, we need day school/treatment program.

    Note from Michael: Yes, we do. Very badly. With caring and compassionate staff trained in psychosis who don’t punish mentally ill kids.

  13. I can understand how all of your beliefs and your ideas have come from a lifetime (jani’s lifetime) of frustration and brick walls. two things I wonder…
    1. Training psychologists and psychiatrists together…if this happened, what would differentiate the two? Much of med school seems irrelevant to one who works with mental health/the brain only…why waste time and money so they can learn about the kidneys and pancreas? I give much credit to your psychiatrists. As a patient and a health professional I have met only one or two psychiatrists who are able to effectively provide any sort of therapy or even to make a connection with people.

    2. I do see your point on behavior management. Punishing someone for something that is not a choice is harmful and ineffective. I am curious though about your statement that these programs should provide positive reinforcement for good behavior…if the person truly cannot control their behavior then why emphasize it at all? It seems a bit contradictory. As a sidenote I must say that after working with children with severe illness, both medical (as in throughout the body) and mental, for years I do believe that ANY illness has a profound effect on the child’s worldview and the way they are treated and the experiences they have because of that illness absolutely effects their behavior. This does not mean behavior management will cure the illness, only that these children not only have organically caused issues that rob their behavioral control but they also have very confusing input as to what appropriate behavior really is. I wonder if “behavior management” could be provided in conjunction with medical therapy to basically provide a model for the child of how to behave/function in society.

    I understand your busy schedule but if you have time I am truly interested in your responses…I am reading this blog and your site out of interest but also as a professional in the health care and pediatric field who is looking for insight that may help me be more effective, competent and compassionate with those I care for.

    Oh and to Adrienne…absolutely agreed! How ridiculous for a system with so much money funneled into residential/inpatient care to have so few day treatment programs that cost less, allow the family to stay together but still provide intense treatment, a real education, not to mention allow the parents to work!

    Note from Michael: All good questions. I think the merging of the two areas is necessary because as you correctly pointed out, the beside manner of many psychiatrists leaves a lot to be desired. I think anyone who is charged with treating an illness, physical or otherwise, needs to have as much insight into their patients’ thoughts and feelings as possible. Psychiatry without psychology seems like focusing on the illness to the exclusion of the person. Likewise, psychologists do need more medical training so that they don’t automatically assume that every presentation is external. Again, in order for therapy to be successful the psychologist must have an understanding of the body and how biology comes into play.

    As for reinforcement of positive behavior, the reason I believe in it is because although there is limited control (and during psychotic episodes none at all), positive behavior reinforcement is still worthwhile because the goal is integration and happiness within the larger society. In my own experience I have found that it is possible to reinforce positive behaviors, although it takes a VERY long time, far longer than traditional ABA therapy. This is because those who suffer from psychotic episodes may not be, especially in the early going, be in touch with emotions. In Jani’s case this was because the schizophrenia interrupted Jani’s normal emotional development. Now that her illness has been pushed back a bit, she is now starting to have to deal with emotions that are totally new to her. So unless how most of us learn social behavior through trial and error, Jani must be taught it. She cannot (yet) connect her feelings to how others feel. But what she can do is think. Just has how psychosis is a “thought loop” that goes around and around and no logic can break it, so it can be used positively. If you repeat the positive behavior over and over again with no anger or frustration, you start what I call a “positive thought loop.” In other words, Jani’s brain gets stuck on doing something positive instead of something destructive to her or others.

  14. Born schizophrenic now on DVD
    Hi susan and micheal did you know that born schizophrenic is now on dvd At discovery education Born Schizophrenic DVD
    Less than one in every 50,000 children is diagnosed with schizophrenia. January was diagnosed at the age of six
    $59.95

    http://store.discoveryeducation.com/product/show/105172
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    Note from Michael: No, I didn’t know that. Thanks. I will put up the link.

    New note from Michael: The link is now under the “Media” tab at the top of the page.

  15. seen you across a clouded room , in the sky across the street on the ceiling at 5000 feet faraenheit that is… Someone at church said that is schizophrenic I think really disturbed individual and says bizarre things. But other people just think he is acting.

    Note from Michael: Hard to act psychotic. In fact, I don’t believe it can be done.

  16. Me either I don’t think one would pretend to be mentally ill just for attention, That would be creul and be making fun of mentally ill people, Really I don’t think people understand his illness so they just say that plus he is going camping with the church he is 11 ADHD gets psychotic when he dosen’t take his medicine he has behavior problems and at youth gropu he sparayed choclate syrup on everbody and the youth pastor tried to disciple him but he got really violent.

    Note from Michael: I am no MD but it may not be ADHD or that alone. ADHD people don’t generally get psychotic when they don’t take their ADHD medication. I hope this young man has access to a good psychiatrist and therapist. There may be nothing you can do except stand by this young man and help him as best you can. If his parents are looking for help they can contact me. But don’t suggest it unless they seem open to it.

  17. Hi I was Just curious what it would mean if someone said they were having schiophrenic dreams I wonder do they mean hallucinations. Cause my friend told me that… and I not sure if she is schizophrenic

    Note from Michael: Are they asleep or awake? If asleep they might just mean that their dreams are weird.

  18. Im not sure I think she was awake… a big black cat standing over her bed and a shawdow man.

    Note from Michael: Hard to say. We all have moments where we experience hallucinations. For example, when you think somebody came into the room but they didn’t or you thought you heard something. The real issue is whether these “schizophrenic dreams” are bothering her. Unless they are interfering in her life, like scaring her so much she can’t function, I don’t see them as being any big deal. But again remember I am no doctor and have no specific training. If you are concerned about your friend, what resources are available for her, in terms of people she can trust to talk to?