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Turn and Burn

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

 

 

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

 

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

 

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

10. Siblings

11. Managing Stress

12. Procrastination

13. Divorce

14. Impulse Control

15. Loss and Grieving

16. Feelings of Unfairness

17. Low Self Esteem

18. Peer Pressure

19. Relationship with Parents

20. Bullying

21. Depression

22. Transitions

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

24. Guilt

25. Performance and Competition

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

That, and schools.

 

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

 

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

 

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

 

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

 

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

 

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

 

ONE YEAR.

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

I’m sorry, no.

 

That’s not on the list.

24 comments on “Turn and Burn

  1. My daughter’s IEP states “emotinally disturbed” an is currently in residential. She’s been there for 3 weeks. Many of the topics on that list are subjects that I feel would benefit my daughter and myself. Perhaps the list does not apply to your childrens “mental illness” but they do apply to many other categories that qualify for an IEP under the emotionally disturbed category. My daughter is diagnosed with a mood disorder and generalized and social anxiety disorder. Almost ALL of those topics would be beneficial for her and our family since they are seeking to help kids like my daughter to develop better ways to handle stress and anxiety when she is stable.

    My experience has been a little different from yours in that I want my daughter to come home and they keep telling me she is not ready. I feel like they may be milking insurance when she could come home now and thrive in the partial day program and eventually transition back into the BMC room at school and then back to mainstream. I truly believe that S’s manic episode and suicidal ideation was brought on by effexor and latuda. Since she got off those and onto geodon and prozac she has been feeling better with the exception of a few visual non-threatening hallucinations of white cats (she consideres white cats to be good cats) and feeling like she is trapped. At this point I feel like being in-patient is no longer necessary and I plan to request her to be discharged on Monday. I know my daughter better than they do and she is ready to be home now.

    But I know that our situation is certainly less common than most. But it took us 14 years to get any help at all so I do understand.

  2. You are 100% right! My middle child was released recently 2 days after second suicide attempt in four days. They said the immediate crisis was over. Really because right now it is very hard to watch her 24/7 as her moods shift. Also our now five yr old who self harms everyday in fits of rage has yet to go inpatient. We try to ride it out because developmentally he is about 2-3 and we don’t think he could handle the 12+ hours it would take to get him in.

  3. Mental illness is *not* the only chronic illness, and it is simply not true that every other illness results in either getting better or dying. It’s ironic that you casually dismiss the reality of other chronic illnesses on a blog where you constantly write about how no one understands what having a mentally ill child is like.

    1. I completely agree with you, and I’ll provide some example for Michael.

      Michael, ESRD does not get any better. ESRD means dialysis for the rest of your life or a transplant. Transplant is NOT a cure, and you need to take immunosuppressive medications for all the time you have the transplant.
      Diabetes does not get better with age and acidoketosis can kill you. Diabetes has also its complications, namely retinopathy, arthritis, cardio-vascular disease, and nephropathy.
      An asthma flare-up can kill.
      AIDS does not heal, but can only be managed through strong anti-retroviral medication with its side-effects.
      All these illnesses are as chronic as schizophrenia and ASD, need lifelong care and can be life-threatening.

      Michael, we all hear how angry you are about the system.
      And yet, dismissing a chronic illness while complaining about not being understood/heard does make people less willing to listen what you want to say and more prone to judge you.

      I completely understand that it is not your intention. Sadly, it can have this result.

    2. As someone with diabetes and a child with schizophrenia and one with aspergers, I have an opinion on this. When I tell people I have diabetes, they are sympathetic. There is a lot of help out there for me from the medical community. It is a very supportive atmosphere where ever I turn. Now, when I tell people I have a child on the autistic spectrum, there is less support but there is support out there. BUT, when I tell people I have a child with schizophrenia, there is NO support! There is judgement and distance. There is no help from most medical communities, insurance companies, schools, community, and even most friends and family. There are fewer hospitals and fewer options. There is a lack of help or downright discrimination from many places that are supposed to “help”. I think that is what most people with mental illness and parents of kids with mental illness is most frustrated by. I am angry that there is very little “help” for my mental ill son and for the many families I have met that have mentally ill children or relatives. There needs to be a greater movement for help and understanding for the mentally ill in this country!

  4. Don’t give up, Michael, I sure won’t, I will continue to research and study and to to continue to do that in a looping manner until I can know truly what is going on in the brains of people suffering from mental illness. I will make you guys proud, I promise, I read and study all day while listening to film soundtracks, it helps to keep me focused for a long time. I will know if I get into UCLA’s psychology program in April, imagine if I do get in, I will tell you guys, and you guys will be so happy. 🙂 I will help you guys out so much, you will see.

    Ruben Rafayelyan

  5. I think you may have misunderstood what it is these interns are offering as well as what “mental health” really means. First, “mental health” has nothing to do with mental illness. It’s simply about the health of your mind. Everyone has mental health just like everyone has physical health, not only those who are sick. Everyone has to take care of both, not to prevent future physical or mental illness but to remain healthy. Parents of special needs kids, regardless of what those needs are, are of course going to have a lot of stress in their lives that will lead to other problems. It may lead to anger, anxiety, conflict, guilt, divorce, etc. It sounds to me like these interns are wanting to help the parents of the kids in the ED program with these things, not that they are treating mental illness or claiming that the things on the list has anything to do with mental illness. They are reaching out to the families, not the mentally ill kids. Like you said, the things on the list have to do with problems in life and problems in life is what mental health deals with. I have no idea how much “speaking engagements” or “educational materials” actually would help these very problematic issues but that’s a different issue.

    Mental health is about taking better care of yourself, making better choices, eating better, etc. But since you have been under the impression that mental health refers to mental illness it sounds to you like the messages that one should eat salad and make different choices are saying that these things should prevent schizophrenia. I don’t think that’s the intended message at all. I don’t think these messages has anything at all to do with mental illness and does not target that population. It targets the general public who are dealing with life stressors and minor psychological problems. Maybe that’s why you feel that those talking about mental health are ignoring the sickest mentally ill – because they are not targeting the mentally ill just like health clubs don’t target cancer or MS. It’s not because health clubs ignore seriously physically ill. It’s simply not their target group because yoga and diets isn’t going to help them much, just like mental health practitioners won’t help those who are mentally ill. But maybe those mental health practitioners can help people like you and Susan who are going through life stressors and may need to work on your mental health to be able to handle those stressors better.

    (ETA: I realize that mental illness is a form of physical illness but I differentiate between the two terms to keep it simple.)

  6. I understand all the pain and frustration. I am telling you, Wisconsin has this stupid law that a 14 yr old has to be a voluntary patient? (Yes of course, unless I have to chapter 51 her) But really?? Where in the hell does a 14 year old who does not have mental issues, know what is best with them, then take one, like my daughter who is in desperate need of help. I think these laws were made by a bunch of 14 year old imbicils. I want to fight these laws, but by that time my daughter will be older. I feel sorry for the parents, and all you want to do is get your child (in my case my daughter help). She was in the hospital and they released her after 3 days and is still so very unstable. She walks out of school, twice this week, fri and today. She has no destination, but running from the voices, I guess. And no diagnosis until your 18. This infuriates me. I am not big on knowing a diagnosis, but would you give someone pepto bismal if they had a headache. I took my daughter off the adderall and she appears to be doing better, and when her mind is focused, she gets A’s on her tests without the adderall. Give her something to speed her brain up and then give her high doses of seraquel to speed in down. I am getting frustrated at doctors and the such. I have to me an advocate for my daughter and teach people a few things. I guess I am a PIT BULL when it comes to her, but I am tired of the no help from anywhere is seems….

  7. Dear, Eve:

    I couldn’t read all your comments through my email, however, I read the beginning and I would like to say that UCLA absolutely accepts on the basis of GPA and performance of the completion of “pre-requisite classes”. So, you are wrong. My GPA is 3.70 and I took really hard courses along with honors science courses. So, I have a chance at getting in. I also revised my transer essay for about 20 times, so it’s as polished as can be. I guess you are trying to put your sour mood onto others. I am commited and that’s all it matters–you try handling severe OCD and Aspergers while trying to keep your GPA up–it will be so surpising at how you will fail at this due to your sour mood and attitude. That is if you had mental illness and knew what was like. Michael, can I send you my final draft of my UC essay to you for review, I polished it a lot and revised it to make it into something you will be proud of. What email address should I send it through to?

    1. I banned Eve. People can say what they want about me but they are not free to attack my readers and try to tear them down.

      1. Thanks, Michael. I am glad she is banned. I wanted to reply to show her that I am not afraid of her and that I am commited to UCLA and that I have a chance at getting in.

  8. I truly understand where you are coming from here as much as one can in my position since I don’t have any children. What I do have is a younger brother that was diagnosed with schizoaffective disorder when he was 10 and I was 12. We spent many years going from one hospitalization to the next I remember once when I was 18 and he had just turned 17 he was discharged from the hospital only to be readmitted 3 days later. Another incident that occurred just this past year was that he was discharged 12 hours after making suicide threats. We have been officially battling mental illness for nearly 12 years now though he was in and out of psychiatrists offices starting at about 4 years old for hyperactivity and mood swings and it is through these records that we have been able to determine that he was hallucinating at the time. I remember thinking as a teenager that he needed long term treatment in order to stand a chance at being able to live independently, which is still our goal, though we weren’t able to get a psychiatrist to agree that this is what he needed.

    Jes

  9. I have come to a realization, that I am going to come at my daughter and try being a friend. ( I know you shouldn’t be friends with your children parent first) However, what kind of choice do I have left? I am also going to step up and councell her everyday! I need to get her in touch with her feelngs and express mine as well, so I am going to try and step up. I am sorry that I am using your blog Micheal to rant, but dealing with this is sometimes unbearable! I feel your pain, but most of all feel all the pain that our children are going thru and a lot of times it is so overwhelming, because it is not you or I that suffer, they are suffering and we have to help, and hard as it is sometimes take a back seat…. My daughter called her teacher a fucking liar today and threw a labtop computer on the floor, her hopes are to go to jail, but why? Are the voices she hears telling her she is bad? That is what I am starting to think, but unlerlining she is a beautiful, intelligent, funny, creative little girl, until the evil comes out of her. Heart breaking seems to be an understatement! Prayers prayers prayers, God made me strong, to be able to handle my mother, sister, and daughter, I feel sometimes super human with all the, sorry to say this, but shit, I have no choice but to experience. So today on my walk, I came up with my three step plan, Accept, Let go, and Deal….. Hope this might help some of your readers!! And when I mean let go, it is not giving up, but this avenue with my daughter has consumed my entire life, in that essence I have to learn to let go…With my heart, but maintain my strength. As you do too. I mean if they don’t try to stabalize her soon, I think I may need mood stabilizers, and that isn’t a joke. I have been experiencing panic attacks, and it revolves around my daughter. Sad, but reality. And a parent that doesn’t have to go thru what we do, are completely blind to our heartaches and sorrows, in which there are numberous. I hope Jani and Bodhi are getting the help they need, and my heart goes to you and your family. I also pray the same for my daughter. Do you know what is the difference between childhood schizophrenia and when one has it as an adult? Can these kids outgrow it eventually? My mom was diagnosed at 27 had 7 shock treatments at that time and episodes along the way, but know she is going to be 63, and hasn’t had a break down since the early 80’s, I want to say 84. But she still takes her medicine but can be just as coniving and manipulative. But when a child developes this, will they have the same prognosis, that one day they can be completely stable? I guess it probably will be truely up to God? I don’t know but frustrating none the less, as I keep seeing a dull future for my daughter, I want HOPE, and keep praying for that, and sometimes I wonder if that is too much to ask for? Until then… wishing you joy and comfort when you need it. The biggest thing we have in common, is to continue to stay “STRONG” I was told by a teacher that I am “Paula Strong” Makes me laugh, when my son is “Army Strong”. And to anybody who might feel this is the parents fault, shame on you! It is biological, and I am only saying this, because I have raised a son, and I have a 7 year old daughter (who gets tormented by her sister on a daily basis) and they are okay, I have guilt I am sure human nature, but in the much bigger picture of things, it is not, never have been my parenting or her dads (in which I used to blame- my heart bleeds for that) It is the way she is wired, or not wired….. Micheal, take care and again sorry for filling up your blog, but it does make me feel somewhat better!!! To know I am not alone and somewhere, I hope you feel that way too. You are not alone…..

  10. Pingback: Safe and Sound (All Made With Lead) | Jani Foundation

  11. My 13 year old son is now in the hospital. He has been dx with Schizoaffective Disorder, Aspergers, OCD, PTSD from bullying at school, and ADHD. This is his first hospitalization. His doctors have wanted him impatient for 3 plus years. We have tried to do this on our own. But, have failed. Wow! Mental hospitals are definitely run totally different than “regular hospitals”. We have been told that parents are not even allowed to see the psychiatrist, let alone talk to him/her. All communication is done through a social worker, nurses and/or psychologist. I guess us parents are so lowly we cannot speak to the high and mighty doctor.

    He starts his third week in the hospital today. Our insurance denied any charges the first day because they said being suicidal was not cause enough to be hospitalized. Since then, after many, many hours of phone calls (while we should have had the decency to focus on our ill child, but no we had to spend our energy on stupid insurance) they may pay. But, every few days, they start fussing and threatening.

    Meanwhile, my son is still depressed, seeing and hearing things, and keeps changing personality with the different meds they are trying out on him.

    My husband told me I have to accept the fact that my ‘real’ son is gone. He will never have his ‘true self and personality’ back. I refuse to accept this. What do you all think? Is he gone forever? He has been gone for years.

  12. Also, thank you Mr. Schofield for your book about Jani. I have felt so alone in this, and recently discovered your book. I wish you and your family did not have to go through all of this. I wish my family didn’t either. Thank you for telling your experiences. I could relate to so much of it. I have prayed for your family since reading the book. I wish I could be hopeful and say hang in there and it will get better for our families but I don’t feel that way. For me, with one that has schizoaffecive and aspergers and another one with aspergers, I just hope I have enough strength to get through tomorrow.

    1. Yes, when I ran across your book, it was like reading the struggles I have gone through, and am going through, with my daughter. I felt like I was reading mine n my daughters journey. I’m so sorry your family, because I am there also, and it really really really sucks.
      We live in So Cal also, and are familiar with several children’s psych facilities in riverside county-I was glad to know to stear clear of Alhambra. Each moment of each day is unpredictable. We always have to be alert for sudden worsening of her psychosis, or complete psychotic breaks (my just turned 14 year old has been battling severe PTSD along with schizophrenia since age 8-her drs tell me she hallucinates for 90-100% of the time. “The voices” and “friends other people can’t see”, along with tactile, and smell hallucinations) We are still waiting for a referral to a new child psychiatrist-her current one is clearly in over her head with my daughter, and I have had to be very “pushy” to get her to actively treat the psychosis. Keeping her alive and others around her safe is first priority. It is such along and lonely struggle. I felt completely alone, an beyond exhaustion, with no clue where to try n turn next for my daughter. I read your book in one day as my child, so bright (who used to speak three languages before the disease started to grab her away) sat catatonic, completely removed from reality, unable to function in the ” real world” most of the day in the room with me. Taking breaks of coarse to lead her for bathroom trips, and try to get her to eat.
      There may be no “my child was magically healed ending” to your book. Just like we are, you were still trying med after med and therapies and constant stimulation, to reduce her psychosis and depression and it seems like revolving door inpatient stays. Now at jr. High age she understands how different she is and gets depressed because of that. But your book was real. I feel and have felt and said and thought those things. I would not wish this struggle on any family. But Somehow it was a comfort just to know she and I aren’t alone in our struggle against this terrible disease.

  13. I wish u guys could move to Mn. We have amazingly wonderful mental health care. One psycho visit for me and the state put such a long hold on me I was there for 2 months the state paid for the whole thing than put me in a getting better facility for another 3 months. I get in immediately when I’m having a problem. Mn is one of the better States for that I think.

  14. I REALLY WOULD LIKE TO MEET YOU GUYS ONE DAY!! I LIVE IN UP STATE NEW YORK AND THE MENTAL HEATH PROGRAM IS REALLY GOOD UP HERE! I HAD SOME ISSUES DEALING WITH STRESS BACK WHEN I WAS 14. LETS JUST SAY MY MOTHER HIT ME FOR 10 YEARS AND THROW ME DOWN THE STAIRS WHEN I WAS 7. I WAS ALSO RAPED WHEN I WAS 7 UNTIL I WAS 10. I HAVE WAS DEALING WITH A LOT WHEN I WAS YOUNGER WITH MY MOTHERS ABUSE AND MORE. ONE DAY I TRIED TO END MY LIFE BECAUSE OF IT. I WAS UNDER WEIGHT FOR MY AGE AT 14. I WAS 88 POUNDS. MY MOTHER WAS NOT FEEDING ME AND WOULD LOCK UP THE FOOD ALL THE TIME.. I WAS SO STRESSED OUT THAT I TRIED TO KILL MY SELF. MY MOTHER SAID THAT SHE WOULD HELP ME END MY LIFE WITH A KNIFE AT THE POINT I RAN AWAY ON A VERY COLD JAN NIGHT.. I HAD NO SHOES OR COAT. THE COPS FOUND ME 4 HOURS LATER AND BROUGHT ME TO THE ER FOR PSYCH CONSULT AND WITH IN 4 HOURS I WAS UP ON THE 4TH FLOOR. THEY HAD ME ON 1:1 FOR 4 DAYS. WELL I WOULD NOT TALK TO ANYONE THERE FOR 4 DAYS ABOUT WHAT WAS GOING ON AT HOME.. BUT WHEN I DID I STARTED TO WRITE NOTES TO THE NURSES AND THEY TALKED TO ME. WELL THE HOSPITAL WAS DOING A GREAT JOB. THEY DID NOT LET ME DO BACK HOME UNTIL THEY DO A FULL INVESTIGATION. I ENDED UP STAYING THE THE CVPH HOSPITAL FOR 1 MONTH SO THEY COULD TALK AND MORE. I WAS NOT SLEEPING AT NIGHT. I WAS ALWAYS SICK AND I DID NOT WANT TO TALK TO ANYONE.. I JUST THOUGHT AT THE TIME I WANT A MOTHER WHO LOVES ME SO I WOULD SEEK ATTENTION FOR FEMALES STAFF OR TEACHER. I JUST DID NOT WANT TO GO HOME TO THAT KIND OF ABUSE EVERY NIGHT.. MY MOTHER WAS FOUND GUILTY FOR CHILD ABUSE. I PUT MY SELF INTO FOSTER CARE WHEN I WAS 14. IT WAS GREAT FOR A WHILE BUT I STILL DID NOT FEEL SAFE BECAUSE MY MOTHER STILL LIVED 10 MILES AWAY FROM ME.. I WAS IN AND OUT OF THE HOSPITAL FOR 3 MONTHS AND THEN I DECIDE THAT FOSTER CARE WAS NOT HELPING ME. SO I WENT INTO A GROUP HOME. WELL I LIVED THERE UNTIL I WAS 18. I WAS THERE FOR 4 YEARS. WHEN THEY TOOK ME IN THEY DID NOT EXPECT TO HAVE ME THERE THAT LONG.. THE PROGRAM WAS ONLY UP TO A YEAR.. SO I WAS A SPECIAL CASE.. MY MOTHER WAS STILL ABUSED ME NOT PHYSICAL BUT MENTAL. I WAS ON A TON OF MEDS TO HELP WITH MY STRESS AND OTHER PROBLEMS SO I GAIN A LOT OF WEIGHT WITHIN 5 MONTHS I GAIN 65 POUNDS.. AND SHE WAS CALLING ME FAT AND MORE.. ANYWAY IT WAS XMAS TIME AND I WANTED TO GO HOME FOR XMAS AND MY MOTHER LOOKED AT ME AND SAID NO!!! BECAUSE I DO NOT LOVE YOU AND YOU ARE NOT MY DAUGHTER!! I GOT SO SAD AND SAID WHY ME!! BUT THE PEOPLE AT THE GROUP HOME WAS SO NICE TO ME THEY LET ME GO HOME WITH THEM FOR XMAS AND ALL THE OTHER HOLIDAYS.. THEY WERE NOT ALLOWED TO DO THAT BUT THEY DID BECAUSE THEY CARED ABOUT ME..I WAS THE ONLY ONE THERE FOR EVERY HOLIDAY. ALL THE OTHER KIDS WENT HOME BUT ME..LET ME TELL YOU WHAT THAT GROUP HOME SAVED ME LIFE.. MOST PEOPLE THINK THAT GROUP HOME FOR FOR BAD KIDS BUT THEY ARE NOT. ANYWAYS TODAY I AM 22 AND I AM DOING GREAT… I DO HAVE SOME MENTAL DISORDERS LIKE ATTACHMENT DISORDER, BORDERLINE PERSONALITY. THE MEDS I WAS ON IN THE PAST WAS CELEXA 20 MG IN AM, CONCERTA 72 MG AM, GEODON 80 MG AM AND PM,TRILPTA 600 MGS AT NOON AND BED,,SEROQUEL100 MGS AM AND PM. I AM ON NO MEDS AS OF TODAY. I AM A NANNY AS I WORK WITH KIDS WITH DISABLES AND KIDS FROM NEWBORNS TO 12. I WANT TO GIVE THE KIDS THE LIFE I NEVER HAD. I NO LONGER TALK TO MY MOTHER. BUT ALL IS WELL WITH ME.. WELL THANKS MIKE FOR READING THIS. I REALLY THINK YOU AND SUE ARE THE BEST PARENTS EVER AND I MEAN THAT.. I PRAY EVERY DAY. I ALSO READ YOUR BOOK AND I LOVED IT. I READ IT OVER AND OVER..

  15. It’ should be criminal, this turn n burn . I’d like to think they realize we only take our kids to the psych ER as a last resort. For us it is only an option when we see my daughter is in imminent danger of hurting herself or someone else. Or in two cases when we waited one day too long. I weather all other storms with her at home and at school myself. But somehow they always assume we just run to them every time our kid crosses their eyes funny. It’s maddening!

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