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If I Only Could, I'd Make a Deal with God (For Eri)

This is my first real blog since “Watching the Wreckage.”

 

That was interesting.

 

First, if you are expecting me to apologize for it, you will be disappointed. I have no regrets. Some things did surprise me about it, though. One, it was my highest viewed blog entry. Ever. Two, I was surprised by how personal some readers took it. And I don’t mean the attacks on me. That didn’t surprise me. I expected some of that because I always get some of that.  I long ago learned that not everyone is going to agree with me (to put it kindly), that some are always going to use what I say to push whatever agenda they have.

 

What surprised me were the reactions from long time readers who thought I was speaking directly to them. I am, after all, just a guy writing a blog and I don’t think it fully hit me until I wrote that particular blog that a relationship exists between some of you and the words I write, and since the words I write are essentially a representation of me at that given time, a relationship exists between you and me.

 

I didn’t realize that. I didn’t realize the impact this blog has, not because of what I say, but because of how some you interact with it like you are interacting with me. You argue with me, but you argue with me like you do with a family member or a close friend. Sometimes you love me. Sometimes you hate me. But you keep coming back. Perhaps it is because I acknowledge you in your comments.

 

Or maybe it is because you aren’t watching the wreckage. You are in it, too. Where-ever you are, your car has gone off the road too. You have hit a tree. You have crashed as well. And you are trapped inside, unable to get out. And you fear you will never get out. So you turn on the radio, flipping stations, looking for something that will give you comfort. And somewhere along the line you heard my voice, coming from my own car crash. And it gave you comfort to know you are not alone.

 

But I am a fraud.

 

Brief pause while my critics get all excited.

 

I am a fraud because I am a passenger, not the driver. I am in this wreckage because I refused to get out of the car, although I have thought about it many times.

 

I am reminded of how much of a fraud I am every time Jani talks about her hallucinations. Right now, as I write this, Jani is having a sleepover. One of her friends is staying with us.

 

This friend volunteers at the local animal shelter, working with the cats. On our way there today, Jani told us she would meet us there. As we headed, Jani ran up to her excitedly, saying “Hi!”

 

But I wasn’t looking.

 

“Daddy,” Jani called me, “Say hi!”

 

I looked over, hoping that Jani was pointing, hoping she would give me a fixed spot in space to look at.

 

“Say hello to 38 Hours,” Jani says to me like I am being rude.

 

“Hi, 38 Hours,” I called, trying to act like I could really see her there.

 

“She’s waving to you,” Jani says. She knows. Of course, she knows. She’s not stupid. She knows I can’t see 38 Hours. But she is still trying to communicate.

 

Why?

 

I pretend for as long as I can. I really do. I feed her hallucinations (literally). I give them their medication (because all the “humans” have various mental illnesses themselves). I go until I crack, until I can’t pretend anymore that the person Jani sees has the same care needs she does.

 

Jani reminds me of the interpreters who accompany my deaf students in class. I drone on and one, watching out of the corner of my eye as the interpreter translates what I am saying in ASL. Of course, I have no idea what the interpreter is really saying. ASL and English don’t always have exact word for word translations, and the interpreter is translating on the fly, trying to keep up with me. But what always sticks in my mind is the student’s eyes, locked on the interpreter, not me.

 

In real life, I am the deaf student. My eyes are locked on Jani because I cannot hear what the hallucinations say. I am deaf to them. But I know they are there, just like my deaf students know I am there even though they can never look at me for fear of missing something I say. I can’t look at them. So I watch Jani. Jani is my interpreter. She interprets what they say for me and in turn she translates what I say back to them.

 

American Sign Language (along with the myriad other sign languages) was developed to give the deaf a voice, to communicate their world to us. That is why we used to call them “Deaf and dumb,” dumb referring to the inability to speak rather than intelligence. Although in Deconstruction Theory, words simultaneously contain all possible meanings. I don’t know if Michel Foucult is right about this but certainly in the case of “dumb,” while the denotation is “inability to speak,” the connotation of “stupid” was also present. Clearly we recognized the offensiveness of the word or we would not have stopped using it.

 

The desire to communicate is powerful. It is a basic need. That is why I think Jani keeps translating for me even though she knows I can’t see and will never be able to see what she sees. She still needs to communicate.

 

Most of the time, I play along. Because I fear if I don’t one day she will stop trying to communicate and I will be left forever on the outside. If somebody is trying to communicate with you, you have to try and communicate back, even if you don’t know the language. It is how we acknowledge each other as human. Even if you have no clue what they are saying, you have to try and understand because they are trying to communicate with you. It is your duty as a human being. Otherwise who don’t speak our language become nothing more than pets, because we tend to ignore our pets until it is convenient for us.

 

That’s why I don’t try to tell her her hallucinations aren’t real, as has so often been asked of me. Because they are real to her. Me telling her they are not will not change her reality. And as long as she is willing to communicate to me, I have to be willing to try and understand.

 

But every so often I crack. After listening to her and talking back to them through her all day, after having to listen to their needs and desires all day, I break down and I yell. It usually happens when I also have Bodhi and am trying to meet his needs while Jani is hovering in my ear, telling me that 28 Hours or 24 Hours or 1901 or 80 needs something. When it just me, I can fake it. But when Bodhi is crying or hungry or needs a bath or wants me to read to him I can’t fucking take it anymore. I yell “Jani, 24 Hours isn’t real! Bodhi is real!”

 

Jani just stares at me like I have slapped her. Then she turns and goes away. She goes to hide under the mattress.

 

And I feel awful.

 

She was just trying to communicate her reality, which overlaps this reality, while I can only see this reality.

 

Later, I try to apologize. I explain what she already knows. I can’t see 24 Hours or 28 Hours.

 

And I tell her I wish I could.

 

Because I do.

 

I wish I wasn’t deaf and blind to what she hears and sees.

 

There is a whole world that Jani experiences that I never can, no matter how much I pretend.

 

That is why I am a fraud.

 

To those of you in trapped in your own car crashes, I am a fake. I pretend I can relate but I really can’t. And I never will be able to. All I will know is what you and Jani tell me.

 

And that kills me.

 

I get to be alone inside my own head. I have a space where no one else can ever enter.

 

You and Jani don’t. You are never alone. You have to share even your own mind.

 

No matter what anybody in the world says to me, I will go to bed safe in my own mind. You and Jani never can.

 

People sometimes call me “a hero,” as if my commitment to Jani given her illness somehow qualifies me for that title. The commitment is a given. I am no hero. I am just a father doing his job, which, by the way, includes me having to beg my readers for money to pay the rent. Some of you don’t like it. Too bad. Deal with it. Because I am not going to stop until I don’t have to do it anymore. Hopefully that day is coming soon because as soon as my publisher accepts a final draft of my book for publication and it goes to the copyeditor, the next quarter of my advance pays off. Since the book is scheduled for release next March, it needs to go to the copyeditor by the end of July at the latest (they need a nine month lead time to publish). I just turned in my second draft and am awaiting feedback. There will be a third draft and maybe even a fourth.  Right now I am seven hundred short on rent for the second apartment for June. I will short on both in July. I will be short in August. So I am going to keep coming back here and asking for financial help until I get that next advance check.

 

Don’t want to read that? Don’t think I am “making the right decisions?” Stop reading.

 

What I need is money. What Jani needs is the chance to keep finding her way between this world and her world.

 

My hero is Jani and every other mentally ill person out there in my readership. You are my heroes because what you live with everyday is far tougher than anything I have ever done or will ever do. Somehow, you function despite the constant conflict between our reality and another reality. And both of them won’t ever leave you alone.

 

I don’t know how you do it. The rest of us “neurotypicals” would slit our throats. We are weak. You are strong, far stronger than we will ever be. You keep running up that hill, knowing that you will keep running up it for the rest of your life.

 

All I can do is promise I will run beside you, like I run beside Jani. I will never be able to know what you experience. But I will always be there next to you.

 

People have criticized me, saying I “chose this life,” referring to our constant money problems. Damn straight I chose it. And I have no regrets and I will never apologize. You don’t want to give me money? Fine. I will go on to the next person, and the next person, and the next person.

 

Maybe I am finally embracing who I am. Yes, I can be a jerk. But I will do whatever I have to do to keep my family and as many other families with mentally ill children afloat.

 

Some of you, those of you like Jani, have no choice but to keep running up that hill. It is either that or die, and I don’t want that because your lives have as much value as us neurotypicals.

 

I do have a choice.

 

And my choice is to keep running up that hill with Jani.

 

And with you.

 

 

PS: Strangely, I am having a harder time coming to terms with Bodhi’s autism than I did with Jani’s schizophrenia. Maybe it is because I knew something was wrong for years and kept searching for help while so many others refused to see what I saw until they couldn’t ignore it anymore. But I really wanted to believe Bodhi would “turn out okay.” Partially because I didn’t want him to suffer as Jani has suffered and partially to alleviate my own guilt at putting Jani first through his early years. Now I have to face it. There is no doubt he is autistic. Whatever else he has, if anything, remains to be seen, but he is definitely autistic. Jani had the language to communicate. He doesn’t, so I struggle more with him than I do with her. It is so much harder to penetrate his world. But I will run up that hill too.

 

Now I just have to learn another language.

 

His language.

 

You know, Jani understands his speech better than I do.

 

Maybe she will be his guide after all.

 

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40 comments on “If I Only Could, I'd Make a Deal with God (For Eri)

  1. thank you
    This blog entry really warmed my heart. And not only for the reasons you might expect – I relate to Jani in this post as well. You painted a beautiful/sad family portrait in just these few words.. a father’s love shining through what is a virtually impossible situation.

    I think it does make sense that the second diagnosis hit you harder – I have a dual diagnosis child (different, I know) – but the second time around I just thought, again? really? :'(

  2. Isn’t that amazing?
    Amazing that Jani understands Bodhi better than you? You’ve spent all this time and energy protecting them from each other and maybe it’s going to pay off in the end. Maybe as Jani becomes better able to deal with her halucinations she will become Bodhi’s mouthpiece and interpreter and biggest champion. Kids are outrageous and surprising.

    I love your blog posts and I will be at Barnes & Noble to buy your book the day it is released.

  3. response to blog
    Wow! Thank you for your honesty and being the voice for parents who get this! My son has been diagnosed with Bipolar Disorder, ADHD and Asperger’s Syndrome. While our struggles are not the same as yours, we go through many similar things as a family and understand the extent we go through for our children with special needs.

    Blessings to you!

  4. Yes a very heartwarming post. Obviously I dont know you, but you and your wife both appear to be wonderful parents. You are under enormous stress, meltdowns are expected. I think your approach with Jani is a good one, she is your daughter and you are going with your instinct. You cannot constantly deny something that is right in front of a child’s eyes. Mentally ill individuals do what it takes to keep going even if the battle is uphill and so do you.

  5. Climbing Up To The Stars
    Hello to both Susan & Michael! My name is Katie and I am a 12 year old girl who goes to this website to find inspiration. I have had Generalized Anxiety Disorder since I was 5 and have had Obsessive Compulsive Disorder since I was 10. Associated with Panic Disorder. It’s gotten so bad in my life that I’d break down crying at the most random times. I actually see things in the dark, but I know it’s triggered by my anxiety, but I remember seeing a baby cat in my bedroom when I was small. I’ve always have had (what it seems like) someone (Delusion) following me around. it was really frightning for me to know that. I could never sleep as a child, but since the hallucinations were bothering me so much, I gave them names. One of them was Cincinnati, she was a person who could be good or bad. 71 was a number that I couldn’t see but she had talked before, and she was usually very friendly. 18 was the last, she was a cat that I’d used to play with (that I mentioned earlier in the blog.)The blog that I just read brought be back to those moments throughout my life, but it was extremely heartwarming 🙂 Jani is a very special girl and Bodhi is just an angel, them both are the most beautiful children I have ever seen, nothing can change that. I blame the people out there saying “There horrible parents” or “Their just trying to kill her!” curse them for saying such things. Have they had an experience with a Schizophrenic Child? No. I highly doubt it. Those people have no hearts and are idiots. You guys keep fighting and inspire me so much to never give up. keep up the awsome work. I am a 12 year old girl who is on your side 100%, no matter what happens.
    Love,

    Katherine Grace

  6. The hill can be steep
    I’m familiar with the hill Mike… It’s a steep one and goes past the clouds. The higher you go the colder it gets. There is the top though and once it is reached you can coast downhill. Someday we’ll be coasting.

    -Will

  7. “If somebody is trying to communicate with you, you have to try and communicate back, even if you don’t know the language. It is how we acknowledge each other as human. Even if you have no clue what they are saying, you have to try and understand because they are trying to communicate with you. It is your duty as a human being. Otherwise who don’t speak our language become nothing more than pets, because we tend to ignore our pets until it is convenient for us.”

    I think this is why so many people continue reading your blog even after you piss them off :). They do it because you are a human, and so are they. I was not offended by your previous blog. I understood the vein in which it was written, and the desperation behind it, but I can see how some people were upset by it. Sometimes, your writing is rash and overly-emotional, which is a good thing, because sometimes people are rash and overly-emotional. Your writing is just uncensored. Sometimes, it makes you seem like a jackass (no offense), but what person alive has not pissed someone else off at one time or another?

    You are a human, and so am I and everyone who reads this blog. People get offended, and then they get over it and move on, because that’s what happens when imperfect people communicate with other imperfect people. If you love or hate someone 100%, then you do not know them, because the world is made from shades of gray.

  8. Re: Running up that Hill
    Love that tune. Partial to the Kate Bush version, though.

  9. Re: Yelling at Jani
    Talk about impact. This blog really did pack a punch.
    I can see why you felt bad after having yelled at Jani, but, in the end, maybe it’s just another difficult life-lesson that Jani has to learn. She just can’t monopolize your time to the detriment of her brother. So don’t feel too bad about it. And you’re not a fraud, not in any sense of that term.
    And I think I can speak for most of Jani’s friends and benefactors when I say that as she runs up that hill, we’ll all do our best to run with her and stand by to give her a helping hand if need be.

  10. BFF’s between two little girls holding hands up that hill
    I post because while at times I do struggle to read your words, I respect both you and Susan as parents and I know that our hearts break in similar ways. And I know that if I ask Pickles who her BFF’s are her list includes Jani and “Lilly” right along with her cousins and the girls in her RTC Cottage. I hope you know, and that someday Jani will know how the contact, all be it over the cyber world, means to my soon, in a couple of weeks, to be 7 year old. Who has her own gaggle of puppies, numbers, and friends, and who makes progress, only to slip backwards again and again. I wasn’t able to have her on a pass today because she is struggling and it wasn’t safe for me to take her off RTC grounds because she has been running away and as you know, I can’t in any way have any hope of chasing her. When I spoke with her she asks, as always about Jani. If she has new video to watch, if Jani’s numbers are being nice because if they aren’t she is going to “sick 100 on them”. Because Jani is her friend. Even though they have never met. I am not prepared to put our story out there like you and Susan have. That is not meant to come across as a blast against what you guys do. Our situation is different in some ways. Pickles is adopted from birth but she is a spitting image of her older bio sister who I had as a foster and so I have to be very, very careful about her image out there. Both her bio parents are MI and her bio father wasn’t listed on her birth certificate because he is not only Pschz but also a sociopath and very scary, very violent. On the off chance he saw her it wouldn’t take much to recognize the features, and toss in the MI, well, you get the idea. Also with her adoptive Dad I have to be careful were he to decide to try to play Daddy again that he would use my putting her out there as a way to say I’m exploiting her. Lastly with my health issues you know how I constantly worry about someone saying I am not capable of caring for her. So your families work going public, taking the flack you do is something that advocates for us as well.
    And I understand so much of what you said here. Especially with the ASL analogy. When my first husband and I began the adoption process we of course had to do all that mountain of paperwork, including what kids we wouldn’t consider. The only kids we said we weren’t comfy with were children who were Deaf. Not because of any discrimination but because of the inability of my own hands due to my arthritis to make those motions to communicate. I never wanted to make it more difficult for the child, or make them feel badly. That said, this post really hit home. As many of your words do .
    Pickles still tends to keep her friends somewhat quiet. Mostly because she has been teased and put down from other kids, teachers, even doctors that she is making it up for attention, or that its just normal. We are working on it and she is slowly getting better in talking about them. In that respect I can’t relate to getting frustrated. Other than what Pickles does is whisper and talk so quietly it’s more like ambient noise. You can’t make out what she is saying, but she is saying something. Which, yes, can be bloody annoying but not the same by far.
    Bottom line, not matter what our differing ideas are, we are connected because of our girls and their hills to climb. And we will be there together, giving each other encouragement to keep holding their hands, and to keep up the energy to stick with them. When you and Susan slip and fall I will be there to hold out a hand and pull you up and then give you guys a kick in the ass to keep on. And I hope that when I also stumble in my gimpy way you and Susan will do the same.
    Our connection is because of our girls, who are the most important aspect of all this.

  11. [quote]. I yell “Jani, 24 Hours isn’t real! Bodhi is real!”

    Jani just stares at me like I have slapped her. Then she turns and goes away. She goes to hide under the mattress.

    [/quote]
    Maybe if you spoke the words instead of “yelled” the words she wouldn’t be in quite so much pain. She’s reacting to tone of voice. Would you like to be yelled at?

  12. Keep doing your best. Your children appreciate everything you do and I’m glad they are YOUR children. I say this because a lot of people could never handle the amount of pressure you deal with everyday and wouldn’t even attempt to try. They’d ship their kids off somewhere and just live without them. I’m sorry to say that I have seen this happen. Just do the best you can do. Thats the only thing I know to say and I know you don’t need me to say it. Be proud of what you have done and continue to do for those kids. They are worth everything.

  13. I gave $100 to Michael (with no recognition I’m aware of) but I have to say that this tone is off-putting. Now, I fully agree with a father doing what he has to do to support his child, I just don’t particularly care for the tone in which he does it and don’t think it’s a very effective fundraising approach. I gave in spite of, not because of, the tone and am not inclined to respond favorably to it again.

    Note from Michael: Not sure how this particular blog was “off-putting” as you say but okay. Thank you for your donation.

  14. Just another beautifully written blog. keep them up. i love reading yur writings, cant wait for the book, and wish i had you as a professor when I went to college. I will keep praying that you find the funds you need (and the strength) and will send you some myself next time i get paid.

  15. keep going- one second at a time.
    another beautifully written blog. keep it up. I love reading your writings, cant wait for the book, and wish I had you as my professor when i was in college (mine were so boring!). I will keep praying you find the funds you need (and the strength) and will send you some the next time i get paid. keep yur chin up.

    Note from Michael: That’s because teachers are more “student focused” now than they used to be. We actually get training in pedagogy, which previous generations didn’t.

  16. Michael,

    This blog has had me in tears. By far one of the most beautiful, honest and touching ones you have written.

    You may only be a passenger; but you, and all the others sitting in that seat, are the reason that we survive the wreck. You alert us to danger before it happens, guide us away from it when possible and, when crash is inevitable, you are the ones who check for vital signs, call for help and ensure that help is received. You make sure that we aren’t left at that seat, out of control, wounded and screaming for help that never seems to come. Just as we help you understand our world, you help us understand yours. Help us navigate it, survive it and, when it becomes too painful, protect us from it. You become our voice when we are mute, our ears when we are deaf, and our eyes when we are blind. More importantly, you don’t leave us, no matter how far away we may be. And that, Micheal, means more than any language is prepared to express.

    We do this together, driver and passenger. We drive into the night without stars, the fire that cannot be put out, the chaos without anyone willing to restore order; we approach that crash, hands clasped, breath held, and prayers sent. We do this knowing that the wreckage can be rebuilt: it may not look quite the same again; but it is not impossible. There is hope, there is restoration, there is future; facts too often forgotten, denied or pushed away in times where it is too painful to remember. More important than fixing the wreckage, however, is surviving, and being, in the current moment. That is how you get through. You can hire people to help with the car; for everything else, the passenger, who is really the partner, becomes the lifeline.

    Having someone be your lifeline is a hard debt to repay. Thus, if I can offer anything to you, and all the other parents and caregivers who live this life, who sit in that passenger seat, then that is all I can ask for. Hopefully, I will be able to pay it back in a bigger way.

    Let this promise be heard now: I am recovering – slowly; but it is surely happening. No matter how well I get, or what I do, I will not forget any of you. I will not leave you. I will not run. This is my life until the day of my death, and dedicating my life to it is the only thing that makes sense. Reform is hard to come by, and I am not blindly idealistic nor naive; but I will never stop advocating, speaking up, loving for all the children and adults still caught in those labyrinths and storms. If things continue as is, I will have that MD one day. It will be used to help you: all of you. Hear this now. I promise this. This is my manifesto.

    And, Micheal? This road is indeed long, and my mind and all those similar to it quite tortured at times. Some days it feels like I can do this, and I have no doubts; others, most days, I question myself. I get tired. I keep pushing this rock up that hill, and it never gets lighter. But it is not all bad. Some of the most beautiful experiences have come from this life. Love has come from this life, especially in the amount I have received. Thank you for being one of the people willing to support us as we struggle to continue walking. It is an amazing gift.

    Erika

    Note from Michael: You’re welcome.

  17. omygoodness!!!!!
    MICHAEL!!!!!… I was online the other day watching 1 of ur videos.. and someone was saying that the medicine jani is taking to make her hallucinations go away.. also Shrinks her brain…. I know that people on Youtube lie all the time and try to bully people.. so.. I wanted 2 ask u if this is true.. Is this true!?!?! :-0…

    Note from Michael: No, there is no shrinkage of the brain. It is true that these medications are very powerful and the positives must be weighed against the side effects but Jani seems to have a fairly high resistance. A lot of other people do have high side effects but so far not Jani. But we keep a close eye on her. But what those people on YouTube say has no scientific support. They are just anti-medication so they will say things like that.

  18. Sending hugs from the other side of the world…
    I am in Jakarta Indonesia, and just sent you$25 thru my husband’s paypal acct. Your story moves me, I am a mother of two little ones myself. Jani is about the same age as my daughter. I can’t imagine the stress you must endure with Jani’s condition, plus Bodhi too. Hoping this little gesture will help you bring more smiles in Jani’s day, because I know how precious those little moments are.

    Love,
    M. Yu

  19. two in one family
    “If somebody is trying to communicate with you, you have to try and communicate back, even if you don’t know the language. It is how we acknowledge each other as human. Even if you have no clue what they are saying, you have to try and understand because they are trying to communicate with you.”

    You have to do that with babies too. You have to tune in to their preverbal language and respond to their signals. Otherwise they can end up autistic. 🙁

    Note from Michael: Wow. The “Refrigerator Mother” theory of autism. I’m sorry. I didn’t realize Elvis was still alive and Richard Nixon was president. What did you think of that moon landing?!

  20. brain shrinkage
    Michael, we are anti-medication for a REASON. Antipsychotic drugs do shrink the brain. It is a scientifically proven FACT. You’ve admitted in previous blogs that Jani did have serious side-effects in the early days, and, even if she is not having noticeable side-effects now, her brain will undoubtedly be getting damaged by these drugs. You say the positives must be weighed against the side-effects. But what positives? She still has her imaginary friends after several years on massive doses. So the medications are obviously not working in the way you’d like them to. So why continue with this drug-inflicted brain damage? And are you going to do the same to Bodhi?

    Note from Michael: Show me the evidence of “brain shrinkage.” There is no legitimate medical research to support that claim. You believe what you believe because that is what you want to believe, not because it is the truth. I might be doing the same thing as well, but at least I can admit that.

    Also, the goal was never to “get rid” of the imaginary friends. The goal was to stop them from interfering in her life to the point that she couldn’t have a life. That has been achieved.

  21. .
    I cannot wait to buy your book when it is released, and I’m so glad to hear that all is going well in that department. And I really I hope you will get a good portion of the money from book sales..

    In the meantime, I’m going to donate a little bit and hope it will help with your rent this month. 🙂

    Note from Michael: Thank you, Nicole.

  22. Your Book – Next March
    If your book is anything like this post. It should be a best seller.

  23. Antipsychotics and brain shrinkage
    [url]http://archpsyc.ama-assn.org/cgi/content/abstract/68/2/128[/url]

    In this study, a decrease in brain matter volume was correlated with antipsychotic use. That doesn’t mean the antipsychotic use caused the brain shrinkage, and one study doesn’t mean something is true, anyway. And even if it is true, you still have to weigh the pros and cons.

    But there is some evidence for a relationship between the two. That doesn’t mean that the benefits don’t outweigh the risks for Jani, but it’s probably best to stay informed on these types of studies rather than rejecting the claims out of hand.

    Note from Michael: But it has not been established whether other factors, including the natural progression of the disease, are at work. First, whether there is brain shrinkage at all is still up for debate. Second, what causes it is also unknown. Correlation, as you point out, doesn’t mean we can draw conclusions. Nonetheless, I appreciate your level headed approach and the presentation of actual research.

  24. no refrigerator mother
    Michael, you are just being silly with your reply to me. Where have I ever said anything about refrigerator mothers? It’s not a theory I believe in. But problems can arise if the mother isn’t attuned to her baby’s needs and doesn’t engage in the two-way preverbal exchanges and facial copying that are so essential for the child’s development.

    As for the brain shrinkage caused by antipsychotic drugs, you have only to google it to find ample legitimate evidence. Experiments on monkeys have shown widespread atrophy following a two-year period on these drugs. More recently, an experiment on human volunteers showed shrinking of the striatum just TWO HOURS after a single dose. In that instance the shrinking was reversible and the brain was back to normal the following day, but when a child is kept on these drugs for years it can cause permanent structural damage.

    If you want to stop Jani’s imaginary friends from interfering with her life, you can do that by psycho-behavioural means. You do not need to damage her brain to achieve that result.

    Note from Michael: My response was silly by intention. First, you get your “research” from Google? Who exactly has been giving psychotropic medications to monkeys? (I am not familiar with any such studies). What monkeys? What were the controls for the experiments? Who funded them? Did you check for bias? I doubt it. Here’s the thing: whatever you believe, you are going to find someone who will tell you it is the “truth.” Medications, carefully controlled and observed, save lives of those with mental illness and give them freedoms they could not have had otherwise. “Psycho-behavioral” models do nothing for psychosis and have never been shown to do anything for psychosis. After the psychosis is under control? Sure. But you have to get the psychosis under control medically before you can begin any other therapies. For me personally, the medications that Jani is on have saved her life (because I have seen the change-I have seen joy come back to her) and you nor anyone else will ever convince me differently. Ever. Period. End of story.

  25. joyful monkeys
    So you’re not familiar with the studies on brain damage caused by antipsychotic drugs? That’s why I’m suggesting you google it. The monkey study was conducted by Dorph-Petersen KA, Pierri JN, et al. from University of Pittsburgh, and reported in Neuropsychopharmacology 9 March 2005.

    You’ve seen Jani’s joy but have you seen her brain scans? Have you checked to see what damage you may be doing to her brain?

    And talking about joy, your videos show that Jani was a joyful child before any medications. So how can you talk about bringing the joy back to her? Yes, I’ve also seen the videos of Jani in great distress. But wasn’t that AFTER she was started on medications?

    Note from Michael: There is a gap that has never been shown by any of the media shows. There are videos that show Jani in decline long before the medications (between 3 and 5 years old) but they have never made it into any of the cuts.

    But why exactly do you think we agreed to put her on these medications in the first place? Because everything was perfect?!

    As I have said to you before, in the United Kingdom you can probably get a brain scan (MRI) just for asking. Here unfortunately, you can’t. Insurance companies will only pay for MRIs if they deem it medically necessary. They will never approve one just “to check and see how things are going.” So unless you would like to donate 10 grand for an MRI I doubt she will be getting one soon. Should she? Absolutely. She does get biweekly bloodwork to monitor the impact of the medications on her organs (chem panel) and endocrine system, but we pay for that out of pocket. This is America. Insurance companies dictate all care in this country. Two things I like about the UK? Single payer health care system and Dr. Who (big fan-grew up with Tom Baker’s Doctor in Australia). From the British families in my support group I know that British doctors are still behind the US in terms of facing childhood mental illness but I will give you that I respect any country that gives its citizens cradle to grave health care coverage.

  26. 10K brain scans?
    I had to laugh about your rose-coloured view of the British healthcare system! Brain scans are not available just for the asking, and I was obliged to pay for my own MRIs despite having MS and no money. I used my credit card, then stinted myself till I’d paid it all back. They’re expensive but they don’t cost anything like the ten grand you’re quoting. If they’re really that dear in the US, you’d do better taking a trip to England and paying for one over here.

    I think it’s terrible that you have to pay out of pocket for the bloodwork to check the impact of Jani’s medications. It’s an abomination that the doctors can prescribe these poisons and not even check on the damage they’re doing.

    There were some brief glimpses of Jani before the medications, and I agree that things were not right. But honestly, Michael, it doesn’t mean that she had an illness (in terms of a disease process going on in her brain). Her mind (i.e. her way of thinking) had obviously developed in an odd kind of way, but the right approach would have been to seek behavioural therapy, not drugs.

    I know you’re going to slam me down, because you’re so set against behavioural therapy, but the right kind of therapy really can work wonders with children like this. Jani is obviously very intelligent and able to learn quite easily when information is presented in a way that makes sense to her. I’m sure she would benefit from something like ABA (Applied Behaviour Analysis), which has been shown to be very effective in treating children on the autistic spectrum and works on changing behaviour through reinforcement (not punishment). 🙂

    Note from Michael: They do check. That is why the bloodwork is done. Weekly bloodtests are required for anyone on clozaril. I’m sorry if I gave the impression that we have her blood drawn without doctor’s orders. It is under the orders of her psychiatrist who watches the results very carefully but we still have to pay.

    As for affording more MRI, I cannot. And getting Jani eight hours to the UK is just impossible, not just because I can’t afford it but because Jani could not handle such a trip. We haven’t flown anywhere with her since 2006. Too risky. Not because of her but because I am afraid of other passenger’s actions (in this paranoid post 9/11 world) should she act out.

    And I didn’t say I didn’t believe in behavioral therapy. What I said was that in cases of psychosis stablization through medication must occur first for any behavioral modification therapy to work. Jani is able to work on things now that she could not have two years ago when she was biting the back of a chair until her mouth bled because “it makes my teeth feel good.”

  27. I have a ?
    I know this is probable an impossible question to answer, but.. 10 years from now as Jani grows older, Where do you see her abilities at. She is so smart and she can reason, and as she puts childish things behind her, will she choose one world or continue to combine them both. Watching the doc. she is such a cute kid, she is funny on purpose and she likes to tease. I belive we will gain a lot of knowledge through Jani for years to come, because she is good at heart and very smart. I’ll keep sending people your way.

    Note from Michael: I think her world will always be with her. It will never go away. But she will continue to learn to balance her world and ours. I anticipate her getting stronger and better.

  28. fits the spectrum
    No, I wasn’t seriously suggesting you should take her to the UK. Just making the point that you’re feeding her all these drugs without knowing what it’s actually doing to her brain.

    So much of what you’re saying about Jani fits in with her being autistic. Autistic children do stuff like biting things and self-stimming. Picky with their food. Not liking changes in routine….

    Why are you so adamant that it’s psychosis and not autism?

    Note from Michael: I would prefer autism because she would get services that she doesn’t currently get. However, autistic kids don’t hear voices that tell them to jump off third story buildings. Nor do they see things that aren’t there. But what makes you think you know more, having never lived with Jani, than us, or that you know more than the legions of doctors, including experts in autism, who have seen her at UCLA and determined that there is no autism? Go to med school, get your MD, do a psychiatric internship, and then get back to me.

  29. hearing voices
    No, I haven’t lived with Jani, but I’ve seen YOUR videos and read YOUR descriptions of her, and I could see straightway that she’s autistic, long before you revealed that Bodhi is also autistic.

    Autistic kids do hear voices, just as we all hear voices. We all have our inner soundtracks telling us good and bad thoughts and things from our imaginations. Contrary to popular belief, autistic kids have imaginations too, and some create their own imaginary worlds with complex special rules. Jani is unusual in that she shares hers with you instead of keeping it to herself.

    Yes, it’s a problem if she’s imagining that the characters she’s invented are telling her to jump off buildings. But it’s not hallucinations, and it’s not schizophrenia.

    People are trying to put you wise, Michael, but you reject all the sensible advice you’re given. For goodness sake, get your head out of the sand! Take Jani to a different health centre (even if you have to raise donations to pay for it) and get her correctly diagnosed, so that you can get the services she needs and not have to live like this anymore.

    Note from Michael: She didn’t invent them. That is the difference between imagination and psychosis: imagination you can control, psychosis controls you. Not having this argument with you anymore. She is schizophrenic and the medications help her, doing far more good than bad. Also seeing videos and even reading this blog does not qualify you to make an armchair diagnosis, which is what you are doing, which you are only doing because you are so anti-medication. But you know what? Many autistic kids require medication, too. You are not an expert and you need to accept that your opinions are just that, your opinions.

  30. UK Health Care
    I would not be so quick to envy the UK’s health care system. I talk with UK citizens daily, and most of them purchase private insurance because of the lack of services offered by the national coverage. (For example, the wife of one of my coworkers was not able to have an epidural when delivering her daughter – an option that most of us in the US would take for granted.)

    The UK government doesn’t “give” healthcare to anyone. Citizens pay for it in the form of taxes, which of course is how any government “service” is funded.

    At any rate, it all comes down to the fact that it is fundamentally wrong for the government (any government) to steal money from other citizens to finance your healthcare (or any other aspect of your life).

    Note from Michael: Then the government serves no purpose and should not exist. Any government that does not serve the needs of its people will always fall.

  31. Hey Michael,

    Keep this quote in mind when all of these people on here are making you want to pull your hair out with their misguided, misinformed rants:

    “Those who think they know it all have no way of finding out that they don’t”
    —Leo Buscaglia

    Hang in there! We are on a “break” from my children’s father (he is back to abusing klonapin and in a severe manic phase with his bipolar). Still, the kids and I keep going. My son at age 6 has more class than most of your blog readers, guaranteed. He says to me the other day, “Mommy, I do not need any new shoes today, you do not have to buy me any until you get paid again.” Even though he really does need new shoes. That one moment with him was worth six months of struggles with their father. Why? Because I could see that I am doing something right that I am raising a boy with such a beautiful, empathetic soul. I know if you close your eyes and take a deep breath you have a recent moment like that from Jani and/or Bodhi. Grab hold of it and hang on. You are doing a great job, just in case no one told you that today!

    Note from Michael: Quite a boy you got there. Thank you for your words and the quote. I am also quite partial to what my father always says: “Never argue with an idiot. They will just drag you down to their level and then beat you with experience.” 🙂

  32. I don’t understand why people try to make you feel worse about the choices you’ve had to make in treating Jani. She obviously needs medication and can’t function well without it, so why do they insist on coming on here and suggesting that you’re poisoning/killing/harming her by medicating her? I hate when people who have no experience with something and have never even met the affected person taking meds tries to tell you that you’re making all the wrong choices and making things worse. It’s one thing to be anti-medication, but use some tact for God’s sake. If someone else chooses to use it, there’s no excuse for trying to ‘scare’ them about it, or suggest that they’re doing more harm than good. My son has pretty severe ADHD, and after exhausting all other treatment options, we had to opt for medication, which was a hard decision and one thing we didn’t want to have to do. I get so damn tired of people suggesting that we’re doing everything from turning him into a drooling idiot to killing him slowly. I lay awake nights enough as it is, agonizing over the decision, worrying about the unknown, without having holier-than-thou anti med Nazis making me feel even worse. Sorry to go on a rant, but I know how bad it makes me feel to hear people say those things, so I got angry and I really feel for you on that one!

    Note from Michael: Here, here, Melissa! Well said!!!!

  33. I am helping myself in this
    Michael,
    I read your updates with varying degrees of identification and annoyance. And, yes, I’m in a wreck of my own. My marriage is falling apart. I’m praying to find the strength to not to go back. I’m so fucking terrified I won’t have the strength to see this through. It gives me a small sense of empowerment to reach out my hand and try to help you in the only way I really can. I hope you’ll use this contribution to do something for your family and not give it away to someone you perceive as being in more need. I hope you’ll order a pizza or get Susan soem flowers or something. However, a gift is a gift, and I recognize your right to do with it as you see fit. You said Jani is better at communicating with Bodhi than you are. Maybe his need will be a path into the light for Jani. I dont’ know. I don’t know anything. But it gives me a lot of comfort to know I’m not treading water alone, as sad as that is. Please dont’ display my email. And, please confirm my Paypal worked. My bank shows the debit, but my Paypal acted funny.

    Best, Jen

    Note from Michael: Yes, your donation went through. Thank you. Is there something we can do for you? Feel free to email us directly at michaeljohnschofield@me.com or susandschofield@me.com.

  34. treading water
    I dont’ know what happend to my last message. One of those gut wrenching notes that takes all your guts to send and then it fucking disappears. Suffice it to say that, like you, I’m treading water. My marriage is falling apart. I’m praying I have the courage not to go back. I’m so afraid. But, it gives me a small bit of agency and comfort to reach out to you and offer the small support that I can. I hope you’ll do something for YOUR family…I really do. Order a pizza, or get some smokes, or get Susan flowers, or get some Kraft Mac & Cheese fixings for Jani & Bodhi. Obviously, I recognize your right to do with your money what you will. But it would make me happy to know you guys had Mac & Cheese for a few meals. My bank is showing a Paypal debit, but my Paypal is acting wierd. Please let me know if you don’t recive a small contribution from me in the next day or so. Keep fighting the good fight. What other choice is there? Please dont’ display my email. Best, Jen

    Note from Michael: Your comment went through. All comments get held until I can approve them.

  35. “That’s why I don’t try to tell her her hallucinations aren’t real, as has so often been asked of me. Because they are real to her. Me telling her they are not will not change her reality. And as long as she is willing to communicate to me, I have to be willing to try and understand.”

    This is not one of those “questions” that is really a passive-aggressive criticism and I am not trying to “make you see the light!” with this, I am truly curious about your thoughts…

    When you decided to take this approach, how did you justify it in light of the eventual goal of Jani functioning in society as well as possible? In previous posts you have talked about mentally ill people being jailed due to halluncinations and such (tragic). It seems that you want to help Jani be as happy as possible but also adjusted enough to live a good life within this society.

    These things are absolutely real as day to her…I guess my question is which do you see as worse: telling her the truth in the hopes of helping her learn which voices to give more credence to and helping her know how others see so she can connect better, or diving into the world she sees in the hopes of forming a better connection with her yourself, making her feel accepted and loved in the home she has with you?

    And about yelling at her about Bodhi being real…I agree with the others…certainly yelling isn’t isn’t positive for her (but understandable) but the fact is her brother IS real and perhaps reinforcing this for her will help strengthen her ability to look for him and his reactions/needs/safety more vigorously and try her best to ignore or disobey the hallucinations?

    I do not hallucinate and have no idea what she goes through. In my imagination, I would think that hearing others tell me what is real and what is not might, if I was able to trust them and believe them just a little, help me fight the harmful things they said.

    Again, not a criticism. I have no right to do so or to say what you should do as I am not you. Just looking for your thoughts if you are so inclined.

    Note from Michael: Well, first we must understand that a hallucination is as real to someone who suffers from them as this computer is to us. Imagine having someone screaming at you, attacking you, scratching you, all day long. That is not something you could ignore even if you logically know they are not real. But as to your question, I believe that the most important thing for anyone with psychosis is to form as many trusting relationships with flesh and blood people as possible. Denying the existence of the hallucinations, when they are so clearly real to her, will only drive her further into their grasp. My goal is to make our world seem as friendly and as inviting as possible.

  36. From someone who lives in a family riddled with Mental illness, I find your sentiment and openness eye opening. I’m really touched by your commitment and resolve, it’s something I can’t claim to have.
    Mine is the reverse of yours Michael, my father is the one with the mental illness and while he’s highly intelligent and to some degree functional, he’s unable to recognise his illness nor the effects it has on those around him.
    I’ve chosen not to follow him up that hill.
    Because he doesn’t recognise his illness and how his actions affect me and the rest of our family I can’t be of any help to him. This has taken me all my life to come to grips with (25 years so far)
    It seems likely my sister suffers from the same illness (most likely Cyclothymia, a form of Bipolar) and I can only hope if she does spiral downhill I will have the same commitment and resolve as you.

    We could all learn a lot from you Michael, we should all aspire to be more like you.

  37. In regards to the argument you were having with BB you can’t argue with those types of people you can throw as much research, facts and life experience at them and they still won’t believe you. I lump anti-psychiatry in with the people who believe autism is caused by the MMR vaccine no matter how many studies are done they still won’t accept it. Both schools of belief are harmful to society, before medications the mentally ill were confined to institutions in fact the discovery of Thorazine is credited as being responsible for the de-institutionalization movement.

    Everything that BB points out as signs that Jani is autistic have been twisted to fit his/her ideas not to mention everything she points out can easily fit another diagnosis. Stimming is not unique to autism another word for stimming is tourettisms which are movements that mimic tourettes syndrome but aren’t caused by it schizophrenia is one of the conditions that tourettisms are a symptom. Then again I do not know Jani so maybe her movements are caused by something else I’m just speculating and mean no offense.

    Note from Michael: None taken. Who knows? It might all be on a spectrum. The difference between me and BB is I can admit what I do know and he/she cannot. I ended up blocking him/her not because I was offended by what they were saying (although I was getting tired of the argument) but because he/she criticized another reader and her son. For me that is an automatic ban. He/she probably doesn’t even think what he/she said is offensive but telling a mother who has been through hell with her mentally ill son that she is “choosing” to drug him… well, not cool. I can take it. I have a thick skin. But nobody takes a shot at my readers. Unless it is me 🙂

  38. Running up hill…
    I am smiling and crying all at once.. as a now adult women who was diagnosed at 12 i have felt like i am running up hill all my life. And every time i think i am finally close to the top i stumble and fall and have to start all over again.. new meds, etc.. thank you for understanding.. you are not a fake, you just paving your own way for you and your family in the world and reality in which you live, i wish i had been that lucky.

    P.S. I think my sister posted on here once using my email…