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Saint Peter Won’t Call My Name

It feels like 2008 all over again.

 

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

 

It was a bad year.

 

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

 

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

 

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

 

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

 

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

 

Just like Bodhi today.

 

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

 

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

 

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

 

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

 

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

 

But I digress.

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

Do I scream?

 

You bet.

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

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

 

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

 

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

 

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

 

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

 

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

 

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

 

Yes, Susan is my conscious.

 

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

 

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

 

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

 

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

 

Because I have already been there.

 

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

 

So that is what I am waiting for now.

 

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

 

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

 

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

 

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

 

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

 

I look forward to hitting it.

 

Because then we can start coming up.

 

And life can begin again.

 

Post-script: The Jani Foundation still has a responsibility to provide free social events for the ED “emotionally disturbed” children of the Santa Clarita Valley. We have done three events so far and next Wednesday is our biggest event this year, our “Halloween Rocks!” costume/dance party with live DJ at the Sunset Pointe Room between the Residence and Fairfield Inns in Valencia. The Jani Foundation desperately needs your help to continue to offer these events. We are offering Jani Foundation “Socialization over Isolation” t-shirts for sale here on eBay. We have only a limited number made and will not be making more. Get yours today and the cost, minus postage, goes to pay for our social events. http://www.ebay.com/itm/121186195435?var=&ssPageName=STRK:MESELX:IT&_trksid=p3984.m1555.l2649

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

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28 comments on “Saint Peter Won’t Call My Name

  1. GREAT POST! STAY STRONG. STAY HOPEFUL. KEEP FIGHTING. KEEP FIGHTING. KEEP FIGHTING. THE BOTTOM IS COMING.

  2. You truly amaze me. I have your book January first and it was awesome. Pray pray pray! Also , for some reason I can’t get the link to work to buy the isolation t shirt to work. Would love some help. I ordered the 24 hours t shirt,but I want this one too.
    Thanks
    Fran

  3. My son is 6 and still does the throwing…annoying. once he threw his shoes into a zoo enclosure . It was an ostrich enclosure so my husband climbed over and got them. Love the blog, and trying to start our own organization going for our son in PA.

    1. Just want to say ostriches are VERY dangerous, a kick from one could break your spine like a twig, or disembowel you if the claws caught your stomach. Next time be sure to tell staff, even if you think the animals are harmless, and they will retrieve them.

    2. Where in pa? I live in the Lehigh valley. We have two children with
      Severe MI and behaviors . They rival jani and bodhi .. I’d like to collaborate
      On events here for our kids like in Ca…

  4. It so weride how Bohdi kind of reminds me of me. I thankfully and not so thankfully i have “strong” verbal skills, but not always the words to explain whats going on. For me the pain was the only things that stopped the noise, this kind of screaming in my head, i would bit, hit throw and as i got older cut and burn anything to get the screaming to stop, to be able to “come back” for where it was. Im so sorry he has to go through this. But there is hope with instense therpy, medications (we have to go every month at least) i am learning to do better. Dual dignosis is maybe the hardest because you have to get people to see both sides and how they effect each other. Good luck although i don’t know what that really means.
    Ps. if you push your hand in towards his month it will make him let go and its not painful for him, also you may want to see if you can an order for arm gaurds or get the ones that you see kinds in karate wear, it will protect him some

    1. or an ice hockey helmet. someone else suggested that. it seems like the perfect solution because he can’t bite or hurt his head

  5. I just don’t know what to say. I am truly praying for you guys. There is a reason you are going through this. It’s hard, and everyone knows that, but Jani and Bohdi couldn’t have better parents to guide them through this. I have so much respect for the Schofield family. God bless you all.

  6. Just ordered my shirt. You are a wonderful father and a strong person. Keep your head up. Praying for you and sending you my love across the internet.

    1. Hi Justine,

      Yes, I received your order. I just want to confirm that you want the child large (youth large) size. That is what you ordered.

  7. Dear Schofield Family ,

    I am very touched by the story! And am very very happy to see that Bodhi and Jani have such amazing parents!
    No matter how hard times are you always fight for your children to give them a happy life ! The world needs more people like you guys! I only found out about your family earlier today and i am truly amazed how strong your family really is! And i find it absolutely great that you want to make a change ! You have my support and that of many many others! If there is anything we can do to help please just give a shout out! Sending lots of Love from Belgium!

    Maarten Breuls

  8. Have you tried using a ice hockey helmet on Bodhi when he’s raging? It would prevent him from biting and keep his head safe if he throws himself. It’s probably not very comfortable but it’s probably better than the pain from the bites for both you and him. It’s just a thought. I wish there was something I could do to help poor Bodhi. It must be hell to be so miserable all the time.
    I’m just curious, you mention that he couldn’t be sedated. Can they not use benzodiazepines on children? I don’t see how Xanax could not work but maybe it’s not safe for a 6-year old.

    1. Benzos can excite, not sedate…but I have been following this story and bodhi is taking thorazine which has been one of the few meds that actually work. My son takes 200 mg a day, along with other sedatives and he still gets agitated and aggressive. My son was given ativan in an ER and went wild.

    2. I’m schizoaffective bipolar type and I’ve taken both xanax and valium in an attempt to find a sedative so I can get bloodwork done. The last time I got any was at 16 and I hurt the nurses who held me down. I’m 24 now and it’s getting really bad to not know what’s going on. But anyhow. Xanax did -nothing- at all. And now I take Valium twice a day for FOCUS. Sedatives don’t always work as sedatives.

  9. The more I read the story of this family, the more I see it as a screaming example of an ongoing ignorant child abuse. Not that the parents don’t mean well and don’t love their children! No, not at all! It is an abuse due to utter ignorance prevailing in our society. I have tried to knock through this ignorance by posting some educational videos on Facebook in Jani Foundation page just a few days ago, but it seems that nobody so far has watched them, nobody cares.

    In this last blog post the key words are “Like there is, in those moments, someone else pulling the strings, driving the muscles.” YESSSS, that’s exactly the case – SOMEONE ELSE is pulling the strings. But people whose world view is based on materialism just plainly ignore the fact that beyond the physical world there are myriads of subtle worlds that so many children can see, and that have been seen by millions of people down the ages as long as humanity exists. Jani has been seeing some parts of these subtle worlds since early childhood, but there was no one spiritually intelligent enough around her to realize that. Instead, she was labeled early onset schizophrenic and therefore heavily drugged to get rid of her “hallucinations”. She has been put on public display…

    Nobody was there to tell the parents that the Universe is conscious, that every living being, animals included, have consciousness and that consciousness is eternal – it survives the death of the physical body. After death the surviving consciousness continues it’s journey – sometimes to what is called the Light, but sometimes it gets “stuck” around humans here on Earth, even getting tightly attached to them. Attachments happen, when the consciousness of the physically dead wants something from the living – attention, energy, support, or many other things (I will not list all of them here). Little children, who see these subtle dimensions and their inhabitants, are vulnerable to such attachments. The spirits of the dead oftentimes are unaware of the fact that their bodies are dead (read the book by Gary Leon Hill “People Who Don’t Know The’re Dead”), and therefore are frustrated that they can’t interact with physical world, living people mostly don’t see them. Therefore the spirits of the “dead” are happy that at least someone sees them, pays attention to them, talks with them and even plays with them, as Jani did and still does. Such spirits can attach to children, because these children are so loving… especially, if it is the case of spirits of the animals…

    But the subtle worlds are not inhabited just by the spirits of nice and friendly cats, dogs, rats and little children that become the invisible friends of so great many living children in the world (but parents discount children’s abilities to see them, and eventually children “grow out” of their abilities). The subtle dimensions are full of lost and confused spirits and other entities beyond the comprehension of the big part of Western society. The problem begins, when some malevolent, angry entity from the subtle worlds, or someone like the spirit of somebody who has committed suicide – like the girl “in Jani’s head” (as parents and psychiatrists interpret it) who is telling Jani to jump out the window, gets attached to a living human being… It (the spirit, the entity) drives the human being to destructive behavior, crimes, even suicide…

    Seeing the subtle worlds is a marvelous gift, that allows to comprehend this Universe that we live in in a much deeper, broader way, and to make much more loving and harmonious decisions about how we treat the living beings, including ourselves, and the planet we live on. Attachments from subtle worlds are not quite healthy for both sides involved (the attachment and the host), and this situation can be remedied by appropriate, loving means.

    BECAUSE ALL THESE BEINGS ARE REAL (JUST IN THE SUBTLE DIMENSIONS OF REALITY), THEY WILL NEVER GO AWAY THROUGH THE MEANS OF PSYCHIATRIC DRUGS. Just on the contrary – drugs make the situation much worse, because they dull the consciousness of the user (via damaging the nervous system), therefore opening it to more and more opportunistic intruders – and therefore Jani’s and now also her brother’s (for the very same reasons) symptoms get worse and WILL get worse, unless their parents will finally start listening to what I am trying to convey here, start educating themselves, and find a REAL help – some professional in Spirit Releasement Therapy (google for it, for your children’s sake!!!!). If that will not be done, these two wonderful children will just turn (actually, they are already there!) into psychotic vegetables, whose aggressive behavior will be controllable only by poisonous psychiatric drugs, instead of having a wonderful and healthy life that they could have, if the adults would not be so brainwashed by psychiatrists that their children have an incurable brain disease that they have to live with all their lives.

    There are many books written about the children’s spiritual world and psychic abilities (the ones that get totally ignored in Jani’s and Bodhi’s case). The gem on this list is the book “The Secret Spiritual World of Children: The breakthrough discovery that profoundly alters our conventional view of children’s mystical experiences” by Tobin Hart, Ph.D., who is a psychologist and associate professor of psychology at the State University of West Georgia. He is an internationally known expert on the nexus of spirituality, psychology, and education.

    There is a whole library of books on spirit attachments and spirit release, written by psychiatrists, psychotherapists and researchers. I will just mention here some of them: “Healing Lost Souls: Releasing Unwanted Spirits from your Energy Body” by William J.Baldwin, Ph.D., “Freeing the Captives: The Emerging Therapy of Treating Spirit Attachment” by Louise Ireland- Frey, M.D., “The Unquiet Dead: A Psychologist Treats Spirit Possession” by Dr. Edith Fiore, “Remarkable Healings: A Psychiatrist Discovers Unsuspected Roots of Mental and Physical Illness” by Shakuntala Modi, M.D., “Entity Possession: Freeing the Energy Body of Negative Influences” by Samuel Sagan, M.D. … and the list goes on…

    PAY ATTENTION: the authors of those books are not some strange people from the street with some spooky ideas, or religious fanatics suggesting violent and strange exorcisms! THE AUTHORS ARE RESPECTED AND INTERNATIONALLY WELL-KNOWN MEDICAL DOCTORS with decades long clinical experience in hospitals (including psychiatric ones) and with thousands of successful cases of people getting well INSTANTLY or almost instantly after spirit releasement sessions, full of love and care for the patient as well as the spirits to be released into Light. If you choose to ignore all this wealth of information, experience and the availability of professional help, I doubt your kids will ever say thank you to you for that.

    1. I have often thought there must be something malevolent at work when these hallucinations are “telling” their victims to commit violent acts or suicide. notice the wording schizophrenic patients use… “telling me” to… that’s not just a hallucination, that implies actual communication with a 2nd party in their brain, maybe their spirit. can a disease of the brain be EVIL? why not? we cannot possibly know. I think they should at least try what you are suggesting. what could it hurt? as a last resort? they wouldn’t even have to tell anybody…

      1. The parents seem to be totally brainwashed into the idea that it is a brain disease and that a child HAS to live with it all life long. Having a permanent, healthy and final solution does not seem to them as an option: they are deaf to the very idea of such possibility. They are happy with medicating both children to death. It seems that having problem children serves some hidden purpose to them, and therefore they are not much interested in trying the REAL solution, because that will take the whole fame and public exposure away. Healthy children don’t make a sensation!

        As a psychotherapist I work with spirit releasement therapy almost every day, and I have seen miracles right in front of my eyes. But there are people who prefer to suffer and to make their children suffer too. It is their choice! Just reading Jani’s and Bodhi’s stories (how they are being senselessly medicated) churns my stomach and makes me cry. Both kids are USED as an advertising campaign for psychiatric drugs, but the parents are totally blind to it; seems as if they are victims of a mind control.

    2. The things you’re suggesting that people with severally mentally ill children do are incredibly irresponsible and unhelpful. It makes me sad that the Schofields have to deal with things like this on top of everything else. Jani is evidently doing very well on her current medications, and Michael has said many times that the drugs don’t make her dulled or zombie-like, but help her be herself by releasing her from the grip of psychosis. Schizophrenia is a physical disorder of the brain – it’s astounding to me how many people believe otherwise in the 21st century.

  10. after reading your blog, I can literally feel the pain and emptiness you must go through. maybe because I have had some experience with mental health issues myself. I have sent you messages on different sites including facebook and I was wondering if you took any of my suggestions for Jani (I know this post was about Bodhi, but my idea is about jani) first, I suggested making her entire wall a whiteboard for her to scribble on. jani has an exceptionally high IQ, and she identifies with numbers. why not give her some difficult math problems to solve? expose her to algebra, trig, geometry, etc etc. I see a mathematician in her.

    as for bohdi, It’s so difficult to assess his problems without him verbalizing any of them. I pray for you and your family in times of trial. know that somebody out there has an answer! It seems that mainstream medicine has failed you, please don’t lose faith, there is an answer.

    1. Jani is doing quite well. Actually, difficult math problems would cause her stress and we don’t want to do that. With both children it is important to keep their stress levels as low as possible.

      And no, mainstream medicine hasn’t failed us at all. It is a process. Jani’s recovery has been exceptional but it has taken her five years. Learning to live with severe mental illness takes time. It takes a long time to find the right medications, and certainly medications alone are not enough, but if you find the right combination it can be life-changing. For Jani, it has been. Bodhi is still early in the process.

  11. I’m really curious to know how Jani reacts to Bohdi’s episodes? When Bohdi was a baby (and before Jani was properly diagnosed), his crying would send her into a pretty good conundrum. Since Jani has been treated and her episodes decreased significantly, has Bohdi’s episodes sent her into her own rage? Does she understand what he’s going through and try to help? Or does she just go about her business and ignore it?

    1. Bodhi’s episodes do not set Jani off. She expresses sympathy and tries to help calm him down. So, no, she does not react at all like how she used to react before medications.

  12. Hi: I haven’t written for awhile because I felt that you had little connection to my situation when I left the mail group. However, I hate to hear that you are in a very stressful place with your son now. I certainly hope that you find some relief and forward motion for you. I have a teenager with severe autism, so I certainly can relate to stress and limited options and med worries. If you need to vent, please feel free to write me. As you said, Jani has made such wonderful progress; I hope that Bodhi will also get there and the clouds will clear soon.

  13. I would like to thank you.
    Since 2009/2010 I have followed your story. Although it admit it has been a while back then read your blogs and tried to keep updated on what is was like for you and Susan. I will soon be a freshman in college, starting my schooling to become a neuroscientist and psychologist. I want to help children with mental illnesses, and have since I discovered Jani’s story. Years ago, many probably, I commented on your blog and asked what I could do to help. I promised one of these days I will help some of the kids. I hope so. Thank you for being an inspiration. You are amazing people.

  14. reading your blog gives me hope for me. I’m bipolar 2 with severe anxiety. it feels like there is nothing left that’s good in the world and like life is not work living and then I read your posts. Thanks for being a voice in the wilderness. The work you are doing is amazing and beautiful. I’m just trying to make it and to see people on a journey like you guys gives me hope that I can continue the journey too. Thanks.

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