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Remind Me (Failing to Recall)

It’s been almost two months since my last blog and it would have been longer had somebody not posted a comment to my old blog, worrying that my long silence was due to Jani falling backwards.

 

No.

 

Right now Jani is sleeping in her bedroom in her apartment. Susan is with her tonight. Bodhi is asleep in the bedroom in his apartment, where I am writing this.

 

We are still here.

 

In the eight weeks since I wrote my last blog, Jani has not been back to the hospital. She has not been back to the hospital since November.

 

The stretches of time in between hospitalizations are getting longer and longer. Maybe that is why I don’t get so many emails anymore saying, “The drugs are clearly not working. You need to do____________.” In Jani’s case at least, they are. They have been. Clozaril, lithium, and Thorazine.

 

Not that I don’t think about their effects. We have two aquariums in her apartment now, for our ever-growing family of adopted turtles. We have three Sliders and a Mississippi Mud. Basically, every turtle that comes into the Castaic Shelter we adopt. The filters in the tanks are loud. And in one of the tanks we have to keep the day lamp on for heat because the red night lamp burned out and I can’t afford a new one right now. So between the noise of running water and the light, I can’t sleep on the couch anymore like I used to. The only place silent enough and dark enough is Jani’s bedroom. So I sleep next to her now. Susan has always done this but I have avoided it unless Jani specifically asks me to. I am still haunted from having been accused of sexual abuse nearly three years ago when Jani was hospitalized at BHC Alhambra. I have blogged about it before and it had no merit, but something like that never entirely goes away. I suppose because it makes me realize just how powerless I am. When it happened, I knew I hadn’t done anything but I also knew I couldn’t prove that. I was totally and completely at the mercy of LA County Department of Child & Family Services. They were actually very decent about the whole thing so its not fear of them. It’s the knowledge that there will come times when you have absolutely no control whatsoever. We probably don’t have control anyway, but there is the illusion of it. There have been many times in my life where I was at the mercy of other people but didn’t realize it. That time there was no way to deny it. I was powerless. Whatever would happen to me, would happen.

 

But now I have to sleep next to Jani again. And sometimes I will come into the bedroom after writing or working and lay down. And feel the cold of wet against my skin.

 

And realize that once again Jani is sleeping in her own urine.

 

I used to smell it before I felt it. Now I guess it happens so often, the bed is so soaked with it, that I don’t smell it anymore. It probably permeates the room but I wouldn’t know.

 

Jani never wet the bed. Even as a small child. Never.

 

It is the drugs, of course. I am not sure if it is the lithium or the thorazine. Maybe both. Whichever it is, it not only weakens Jani’s bladder but leaves her totally unaware that she has done it.

 

I used to wake her up. She would freak out and fall back into psychosis if she knew what happened so I would tell her it was just sweat. She is smart enough to know it isn’t but she seemed to want to believe it. She took comfort in it. I would change her pajamas and lay a towel down across the sheet. And I would lay down next to her to show her it was okay.

 

Now I don’t wake her up anymore. I just let her sleep. She’ll take a shower or bath in the morning.

 

I lie in my daughter’s urine and all the things that anonymous people who have written to me to warn of the evils of long term use of anti-psychotics comes back to me and tortures me. Despite the impression I might give, I retain every criticism of me I’ve ever gotten. The ones that tell me I am killing her are the ones that stay with me the most.

 

Of course, those people always ignore the reality that the other option is the schizophrenia will kill her. But they don’t believe that.

 

I worry about her bladder. I worry about her kidneys. I worry about her liver. I worry about her heart. Even after her biweekly blood chem panel comes back normal (Jani’s white blood cells are not only incredibly stable but are slightly elevated), I still worry because I know no one really knows the long term risks of these meds. People don’t need to tell me that. I am well aware.

 

I try to tell myself that it is just like getting chemotherapy for cancer. This has become my standard reply to the anti-drug crowd. You wouldn’t tell somebody with cancer not to undergo chemotherapy so why would you tell someone with schizophrenia not to take medications? Chemotherapy can save the body, but at a cost. Psychotropic meds are the same. They can save the mind, but at a cost to the body that carries that mind. Just like cancer plays the body off against itself, schizophrenia and mental illness in general plays the mind off against the rest of the body.

 

I don’t regret the medications. Compared to where Jani was two years ago, medications have given her her life back. A life. A quality life. Not quite the same life she would have had without schizophrenia, but she seems happy. She walks up to other children at parks and asks them their names. This is something I have just started to see again after not seeing it since she was two. It is amazing. She can actually reach out to the world now, without prompting. She is no longer entirely locked within her world. She is reaching out to our world.

 

I see her play with real flesh and blood kids.

 

And that’s the medications. If we took them away, all that Jani has rebuilt since schizophrenia shattered her would be lost.

 

Are the drugs damaging her body? Maybe. Possibly. But what would you do? Would you take away your child’s life now on the off-chance of what might happen in the future? Hell, there was a time when I didn’t think Jani even had a future. Now I know she does. I don’t know what it is, but I know she has one.

 

She has more than a fighting chance now.

 

But that doesn’t mean that I don’t check on her every so often to make sure she is still breathing.

 

I still do that.

 

Even though she has never stopped.

 

Sometimes I actually have to touch her to make sure, though, because she is in a deep sleep and her breathing is silent. I have to feel the rise of her chest just to make sure.

 

The fear never entirely goes away.

 

That is my life. That is her life.

 

I’ve been silent lately for a couple of reasons. I taught all through the winter, teaching an online class for extra money (which won’t get to me until February because the State of California only pays once a month in general and payments for summer or winter sessions are “special pay” that come at the end of the semester-in the CSU, you are always paid for what you have already done, long after you’ve done it, not what you will do). The deadline for my book is fast approaching which has forced me to write that every night, making the blog fall by the wayside. Another reason is I am sick of writing blogs that are essentially me begging for donations to maintain the two apartments, although not doing that has had its consequences. The internet and TV no longer work in Jani’s apartment. I made a payment but it wasn’t enough. Bills are piling up and in this “new economy” they don’t give you very long now before they cut you off. I haven’t paid the electricity in both apartments for awhile. I am not sure the cars are still insured. An envelope arrived from Mercury Insurance a while ago but I haven’t opened it. There is no point because I don’t have the money. One car will sit for days, even weeks, because we don’t have the money to fill the tank. I haven’t paid the co-payment for Jani’s psychiatrist in I don’t know how long. It’s only fifteen dollars a visit but we have to eat. Our pharmacist actually bought my last supply of Lexapro because there is no generic equivalent yet (patent doesn’t expire until 2014) and my insurance charges $85 for a thirty day supply of a brand name drug.

 

The other day I took Jani to the grocery store. I got only essentials, but the total cost was $80. I had forty cash and gave that to the checker, then used my bank card. I had forty dollars in my account, or so I thought. But my card kept getting declined. Bank of America used to allow you to overdraw on your account and then just charge a $35 fee. But because of the constant complaints about those fees, they changed their policy. Now if there isn’t enough money to cover the purchase in the account, the charge will be rejected. So when it got rejected the first time, I figured that I must be a bit lower than I thought. I had bought gas for both cars that morning after running on empty for several days. Usually, when you buy gas with a bank card (used as a credit card), the gas station only charges one dollar. This is called an “authorization charge,” the machine’s way of making sure the credit card is good. It is like when you pay for a meal at a restaurant with a credit card. You are charged for the meal and then presented with the charge slip where you fill in the tip. For a day or two, the charge shows up without the tip, with a notice beside it that says “Waiting for final amount from merchant.” Once you fill in the tip, the restaurant cancels the authorization for the initial amount and re-enters the new amount with the tip.

 

So I figured since I had bought gas I actually had $38, not $40. So I started returning items to come down under $38. Then I ran the card again. Still declined. Okay, I must be a bit lower. So a return a few more items to get down to $32 and run the card again. Still declined.

 

Jani is standing next to me the whole time, holding a box of Kraft Easy Mac n’Cheese.

 

“I need this,” she says, as I go through the already packed bags looking for more items to return. I apologize to the line that has formed behind me.

 

I get down to $30 and run the card again. Again it declines. Something is wrong. I use the internet on my phone to check my bank account, trying very hard not to pay attention to the looks of frustration from shoppers behind me. It takes forever to get into mobile banking.

 

I am overdrawn. By forty dollars.

 

The gas station where we bought gas that morning, because it was the closest one and we were so out of gas we were afraid to drive any further (because my AAA membership has lapsed), didn’t authorize just a dollar like our usual gas station. They authorized the full amount, forty dollars for each car.

 

I wanted to cry. I would have to return another $30 worth of food to get down what I had in cash. How would I do that? What could I return? The milk? The butter? Fighting back tears, I start to go through the bags.

 

“Let’s go,” Jani says to me.

 

“Hold on, Jani. I have to return more items.”

 

“But I need this,” she says again, clutching the mac n’ cheese to her like a stuffed animal. The mac n’ cheese also needs milk and butter.

 

“I know, Jani.” I am embarrassed and there is an edge to my voice. Jani calls it “You’re getting mean.” I am getting mean.

 

The woman behind me in line steps up. “I am willing…”

 

I cut her off. “Yes, I’m sorry. She can go first,” I tell the checker.

 

“No. I’m willing to pay for you.”

 

At first I think I misheard her. She sounds irritated and annoyed, which doesn’t fit with what she just offered.

 

“No, that’s okay. You can go first.”

 

“I’m willing to pay,” she says again, in a voice one would use with a small child who just broke a lamp in the living room and is trying to lie and say he didn’t do it.

 

But I am desperate.

 

“Are you sure?”

 

“I can do it.” She still seems so annoyed.

 

“Thank you.”

 

I watch her swipe her card. The receipt prints out and the checker hands it to me.

 

I feel humiliated. It’s one thing to accept help from people when they want to give it to you. It’s another to accept when they feel compelled to do it because you obviously can’t do it yourself.

 

And I can’t. And I was grateful she did it, which made me feel even worse.

 

I am burning inside as we drive home.

 

“Jani, are you ready to move back in with Bodhi?”

 

“No.”

 

“Why not?”

 

“He touches my feet.” This is Bodhi’s latest thing. He is obsessed with Jani’s feet. Every time he sees her he goes to the ground and tries to nibble on her feet. This also coincides with the lost of his intensive early intervention therapies, because he turned three years old and the local Regional Center hands kids over to the school district at three.

 

This seems so illogical to me. It is like I have forgotten what forced us to move apart in the first place, her screaming at him and trying to hit him when he cried. I have forgotten because things have been good lately. Susan and I have actually relaxed our rule of never taking both kids at the same time. Things are good. Jani got through the winter break without going back to the hospital, and the shaky period for a few weeks after when the effects of no structure of school for three weeks come home to roost.

 

“Jani, I can’t do this anymore. I just can’t. I can’t afford two apartments.”

 

She stares me.

 

“He touches my feet.”

 

“So what?” Inside I am shouting but the words coming out are quiet. Just angry.

 

“He touches my feet.”

 

“I can’t do it anymore, Jani. I can’t live like this.”

 

“I can’t live with him.”

 

I look at her and see her looking at me. Her eyes aren’t blank. She is afraid. She isn’t resisting because the psychosis has her mind. She is afraid. She is a frozen CD, skipping over the same line over and over again because she can’t articulate what she really feels.

 

“What about in March? Will you be ready in March?” March is when our lease is up. We have been late so many times I have no idea if the apartment complex will even offer to renew our lease.

 

“I can do it in March.”

 

But she can’t. I can see her, looking down, walking across the parking lot, not looking up to check for cars, tightly holding her mac n’ cheese box.

 

“March” has no meaning to her. It might has well be forty years. All she knows is it is the future. She does the same thing with her bi-weekly blood draws to check her labs. She starts to scream and cry every time we tell her we have to go. She will beg for this afternoon. We’ll agree. Then when afternoon comes, she will beg for tomorrow. And when tomorrow comes, she will beg for the next day, every time promising that she will be fine when the later time comes.

 

All Jani has the immediate moment. If you ask her if she can accept something in the future, she will always say yes. Because it isn’t right now.

 

Usually, when Bodhi grabs her feet, she gently pushes him away. Sometimes she will even put up with it for a while, like a mother animal patiently allowing a baby to gnaw, before she will say, “My feet!” as if it just started or he suddenly hurt her, which he didn’t. It was the same tonight. She let him go for a while, then suddenly shouted “My feet!” and kicked him off the edge of the bed. He fell head over heels to the floor and erupted in tears. She hadn’t hurt him in so long. Seeing him sitting on the floor, bawling, brought back all the awful memories of when she used to terrify him, to scare him to the point that he clutched at us long after she was gone.

 

Earlier, I had gone on Facebook and wrote what had happened with the woman at the store. “I can’t live like this anymore!” I statused, all in capital letters. A friend commented, “I know it’s hard but you have to remember why you are doing this. For the kids.”

 

She was right. I could see it in Bodhi, crying on the floor, gathered up by Susan who was trying to comfort him. I could see it in Jani, stone-faced, answering “He was touching my feet” to my demands as to why she had done what she had done, as if I didn’t know. Of course I knew. I had pushed her closer to the edge and she was reacting like a cornered animal.

 

Yes, she was right. I had forgotten why I got the two apartments in the first place. Not the violence. The kids. Their lives are stable. I got them the two apartments to give them each a place to be safe and to grow. It was a place for Jani to go and a place for Bodhi to live without fear. It was a middle ground where the mental illness couldn’t destroy their lives or their relationship with each other.

 

That is why I did it. And that is why I had to accept that woman’s charity, even if she didn’t particularly want to give it.

 

There is something more important than my pride. There are things worse than humiliation. There are things worse than having to beg strangers who read your blog for money.

 

There is something better than the opposite of all those things. There is something better than being in control of my own life.

 

Jani’s control of hers.

[video: 100×100]

 

 

 

 

 

 

 

 

46 comments on “Remind Me (Failing to Recall)

  1. As always, I admire your strength to get through such a rough time (financially) in your life, but it does sound as though Jani is doing worlds better! That’s wonderful that she interacts with other kids, and that she was able to weather the holiday break! As rough as things seem, you are absolutely taking care of the most important things first =).

  2. Aww, things will get better! I saw Jani’s story on TLC and i was so intrigued. I searched up schitzophrenia and spent quite some time getting information. It’s a interesting subject, but I can understand how hard sometimes it is to actually deal with.

    Nevertheless, I applaud you. Just remember that you have a one-in-a-million child, one that is seperated from the rest of the children on planet Earth. Can you believe that? Like I say, it is always better to have a wild, interesting child than a sweet, boring one.

    Also, if you don’t mind: a question about Jani? How old is she currently, and does she like to watch comedies and dance? Or play soccer? Playing a sport could really ease a lot of energy down… I’m not totally sure about Jani’s ability socially or mentally so I’m not sure.

    Note from Michael: Jani is almost eight and a half now. She is not much into sports. She can’t handle losing and doesn’t have the focus to stay in the game. Dancing is not much of an interest to her although she will do her own dancing sometimes at random moments. Comedies? Not really. I rarely see her laugh at anything in this world.

  3. Michael,
    I know that with all the stress in your life my words of admiration will simply seem hollow. I am so glad to hear that Jani is doing well, and that you family seems to have weathered the worst of the winter. There is a great, quite strength in you and Susan; you both personify sacrificial love. Mental illness runs in my family, and I like you, take Lexapro vitamins. Since I have been exposed to Jani’s story (originally on TV and now as a member of her extended support group online) I am no longer afraid to have children of my own. I used to fear them being mentally ill and myself not being able to cope with it, but now I truly know the extents it is possible to go to for your child. Try and keep your chins up Schofields and know there are many of us out here keeping your entire family in our hearts. Both Bodhi and Jani seems to be very happy children, and that alone is a success. Bless you.

  4. Hi Michael,

    I am new to your blog, but I learned about Jani and your family from the special you were on. First of all, I am inspired by all you for Jani and Bodhi, and it must be incredibly comforting to know that Jani is doing as well as she is doing right now. I have some random thoughts, but I also realize that I am not living your life, and I can only guess at what you are really going through right now. First, please don’t assume that the woman’s abrupt behavior was really about you. Her attitude is hers to own, so please don’t let it get to you.

    As far as Jani’s behavior at Bodhi, even with the Schizophrenia (and not to downplay the dangers), some of it is still normal for a girl her age. I have 3 children who fight at times, and we’ve had a few experiences where one child hurt another in such a manner that I was truly horrified as a parent. Such behavior is never okay or acceptable, but it happens.

    I don’t think it is possible to avoid some level of stress and reactive behavior/psychosis returning if you all moved back together, but sometimes the best time for change is when things are going well. It seems that it is really the only option with Jani, since you can’t do it when she’s struggling with psychosis. I wonder if it would help to frequently discuss the many positive aspects of it with Jani to get her used to the idea again? Would she prefer having both of her parents with her all the time? Could you create a smaller version of each of their apartments in their individual rooms (if you lived in a 2 bedroom apt)? Maybe 2 or 3 of you could live/sleep in one room and the other 1 or 2 in the other one? And have the central living room be the “together” area, but their individual rooms become the sanctuary from each other. (At least, that is how things are at our house!) When Jani is at the hospital, isn’t that how she lives?

    My son (9 y/o) deals with anxiety, and he struggles with going to birthday parties, etc. because of his fear of the unknown. It takes him a while to relax until he gets used to the environment. I also notice that his general behavior is worse during any transition, such as the beginning and end of the school year. But, eventually he gets used to things and he settles down. I wonder (hope) if that couldn’t be your life back with Jani in one apartment?

    I know, you’ve thought it through a million times over yourself. None of my comments are meant to criticize, but come from a wish that there was a way to bring your family back together as you work through it all. I do wish you all well, and I am moved and inspired by the work you and Susan are doing to shake up the medical community that has abandoned you. I am slowly working on a degree in clinical psychology (I won’t go into practice until my own kids are older), and I want to work with children like yours. Your blog is helping me understand the perspective of parents in your situation, which I hope will make me better as a parent and future psychologist. Know that what you see as begging, I see as teaching.

    Take care,

    Michelle

  5. Sibling fights
    I totally commend your desire to protect your kids from each other. However, I wonder if it is truly necessary – sometimes kids need to learn how to manage sibling conflict (with appropriate parental intervention). My brothers and I rough-housed frequently. Sometimes things got out of hand and we got hurt. Once I accidentally broke my brother’s wrist. Did he hate me forever? No. Was it the end of the world? No. Did both of us learn a lesson about playing safely? Sort of – we later spend many hours “sledding” down the staircase in a sleeping bag. Between the ongoing financial difficulties and Jani’s remarkable progress (and that the two kids have been able to spend more time together), perhaps now IS the time to consolidate back to one apartment. Jani is understandably afraid, but fear shouldn’t be a reason not to act. You have never let your fears interfere with your ability to be a good parent. Maybe now would be an ideal time for Jani to start learning that her fears don’t need to interfere with her ability to be a good sibling (occasional kicks and bruises aside).

    Note from Michael: Maybe. But Bodhi is still just three years old and developmentally behind. He’s no weakling but this isn’t just about what is good for Jani. It is also about what is good for Bodhi. Yes, you and your brother rough-housed and got hurt sometimes, but there also wasn’t the yawning gulf of psychosis on the other side either. Too much stress too fast could send Jani spiraling and could put Bodhi in real danger. No, I don’t think so. Not yet. It is still too soon.

  6. Ugh. Yeah, but bullshit about medicine.

    I had to take Carter to urgent care last night, and we had him in the ER about 3 weeks ago. Cold/flu season is a bitch for asthmatic kids. Both times, when they saw Carter’s list of medications, gave me the stink eye and made idiot comments. I’m going to print some 3×5 cards to hand to doctors, and a different kind to hand to “helpful” bystanders.

    And yeah, I was an inch away from asking the doctor last night, “Would you look at me so suspiciously if those were chemo drugs?”

    Emailing you about an idea my husband and I are tossing around to help with some of our financial problems caused by Carter’s illness.

  7. The Whispering Child
    Michael,
    I know how I tend to glaze over when people give me “their sympathies” for Pickles being mentally ill. I give the memorized speech about what it means to be schizoaffective and then try to put that into the perspective of what that is like for a 6 year old, so I won’t even try to go there, you and Susan hear it enough I’m sure. What I want to say, and hope to say here tonight is from a different perspective, from the perspective of a kid who needed to take some hefty meds starting at age 2 in order to physically function.
    You’re right in comparing the meds our kids take to the need of cancer patients to take meds, and the possible side effects of those. Yesterday morning as I was trying to get Pickles ready for day treatment, she became frustrated and tried to strangle herself after ripping a bow, which I thought was decorative, off a stuffed animal. Without her current med cocktail…obviously we need an adjustment, but if she wasn’t on what she is, who knows what would have happened.
    But that’s not what I wanted to share. When I was 2 I was dx with a chronic illness that can, and in my case has, resulted in significant physical limitations. My parents were presented with choices in medication regimens to put me on. The choices was, the meds, or I could become completely immobile and since I also had organ involvement, eventually my the sac around my heart would have swollen enough I would have died, or the cartilage around my lungs. But the meds carried similar side effects to the meds our kids take. Kidney failure, liver failure, white count issues, you name it. My folks got the calls, the letters in the mail from all those well minded people who thought they were the ones who knew what was best for me, for my family. They chose the meds, because they couldn’t stand to see me scream in pain when the nurse pulled up a bed-sheet to cover me to go to sleep, or the come into my bedroom to find I too had wet the bed. Not because I didn’t know, but because I couldn’t get up to walk to the bathroom and was too ashamed to call for help. So I took meds. Meds originally made to treat malaria, and meds to treat cancer even, and meds that weren’t meant for children so no one knew what the effect would be as I grew up. But they made a choice because they knew, and felt it was the choice that would provide me with the highest quality of life.
    As an adult, I am ever grateful to them for that choice. Others I know whose parents didn’t make that same choice have a greater degree of disability and a much more difficult time of things as adults. So, with that long story I guess I want to say that I truly believe, with all my heart that Jani will be as grateful to you and Susan…and someday even Bodhi, for the sacrifices and choices you have made to improve her quality of life. Quantity means jack….you know what….if it is miserable, lonely, painful…either mentally or physically…and for our kids…scary.

    As for the financial thing. I too understand that. We are living in a home purchased by my bio dad, with the title held by my younger brother, because our medical costs have put me so far in debt I couldn’t get financed to buy shoe laces at this point. I get checks in the mail from other family members who know how much I spend each month on medications, doctor appointments, and gas to get to all the appointments. And I also teach adjunct online for a couple of universities and it doesn’t matter when the checks show up, they aren’t even close to paying the bills. And I just have Pickles and I. I can only begin to imagine the stress it puts on your shoulders to keep the two apartments. But like you made a decision and a move that you knew in your heart and soul was the best for both Jani and Bodhi, I left everything behind to move to be closer to what I hope(d) to be better resources and what I thought was best for Pickles.

    This road we are on sucks. No other way around it. It sucks. It’s full of fear for our kids for the torments they live with, fear for the effects of meds, or the effects if we don’t give them the meds, and fear for how we will make it through tonight, tomorrow, next week, month, year, decade.

    I hope to leave you with some peace, small as it may be, that you are doing the best thing for both your kids, and they will thank you for it. Trust me on this, they will. So go curl up next to your little girl, listen to her breathe, watch her eyes move under her eyelids and ponder that because of those meds, she is maybe dreaming of the things 8 year old little girls should be dreaming of. And the next time she breaks into random dancing, take her hands and dance with her. Nothing a little girl loves more than to dance with her Daddy. 🙂

    And one last thing before I shut the heck up… 🙂 and I know it won’t make the bad memories go away….but curl up next to your little girl to keep her safe from the monster in the closet and CPS can go to hell.

    Kirsten and Pickles

    Note from Michael: Thank you, Kristen 🙂

  8. Tried to submit a comment and it went dedz, let’s see if it works…
    I’ve been following your blog for a while, Mr. Schofield, and I’m finally gonna tell you: I think you’re an amazing person, and that you and Mrs. Schofield are some of the strongest people in the world. Looking over some of your other blogs, it seems like people like to tell you what’s best for your family – and sometimes not very nicely – but I think that whatever you do, it’s the best decision, because you made it. And of all people, YOU know best, and nobody can EVER say otherwise.

    What I really, really wanted to tell you: you’ve been yelling, and we’re starting to listen.

    (Also, I remember thinking ages ago that if you and Mrs. Schofield can smile extra just even for a minute or two, maybe that’d help even just a bit, so here – I hope this makes you laugh. http://www.youtube.com/watch?v=v6iHCFiSqIw&feature=related )

    Hang in there, Mr. Schofield!

  9. Submitting my comment again, I think Firefox is eating it. How rude!
    I’ve been following your blog for a while, Mr. Schofield, and I’m finally gonna tell you: I think you’re an amazing person, and that you and Mrs. Schofield are some of the strongest people in the world. Looking over some of your other blogs, it seems like people like to tell you what’s best for your family – and sometimes not very nicely – but I think that whatever you do, it’s the best decision, because you made it. And of all people, YOU know best, and nobody can EVER say otherwise.

    What I really, really wanted to tell you: you’ve been yelling, and we’re starting to listen.

    (Also, I remember thinking ages ago that if you and Mrs. Schofield can smile extra just even for a minute or two, maybe that’d help even just a bit, so here – I hope this makes you laugh. http://www.youtube.com/watch?v=v6iHCFiSqIw&feature=related )

    Hang in there, Mr. Schofield!

  10. You’re in my heart
    Thank you for checking in. I’m so so glad to hear that Jani is stable, and sad to hear that you are still struggling so much w/money. I just want you to know that I am holding your entire family in my heart. I check the blog often, and I hope that soon, somehow, the pressure will ease up.

  11. thank you
    Thank you for writing this entry Michael, I know your time must be VERY limited. I think you have many people (like myself) who worry when there is a lag between posts, we fear the worst and I’m happy to see things are stable. Everything you say is right because you are the “expert” on Jani, I hope you know that everyone (with half a brain and an open heart) realizes that.

    I’m SO glad to hear that she’s making gains, the increased socialization is HUGE. I know you’re in California but I had a few suggestions from the perspective of a social worker who lives in Ohio (so take it for what it’s worth, just throwing out thoughts/ideas). I have a caseload of 33 families of children/teens who have an ASD so I’m coming from that perspective. Most of their children/teens are on the low-functioning end of the spectrum (also with mental retardation) and I think you would feel a kinship with so many of them. Many of the kids have episodes of aggressive behavior and/or self-injury. In extreme cases this happens several times a day and I work with many single mothers.

    -Your 100% correct about the meds and the “cost/benefit” analysis, fwiw my 33 year old best friend (and former adult clients at a community mental health center, many of whom were in their 50’s and 60’s) do fine on the meds as long as regular blood and liver tests are done. Yes, we don’t know the long term effects but I would argue that many people who smoke/drink/have a poor diet/are regularly exposed to environmental toxins are more at risk.
    -I’m assuming you receive SSDI for Jani, I hope so.
    -Would she qualify for Medicaid in your state? Even with your income she should because of the disability. If not, does your insurance company have a mail order prescription plan? Most of the time this cuts your co-pay down to 1/3 of the regular cost b/c you get a 3 month supply. Also, in my part of Ohio many psychiatrists have a Lexapro discount card available and/or are willing to offer samples to low income clients.
    -Can you get food stamps from your local job and family services? What about emergency funds (in our state it’s called ‘PRC”) Do you utilize local food pantries?
    -In our state there are special schools for kids like Bodhi who are over age 3, his school district would pay that school or “academy” through the Autism Scholarship Program. I work at such a place and we serve children/teens ages 2 1/2-22. He could keep receiving that critical early intervention and then of course transition back to a traditional school whenever you and Susan feel it’s appropriate. I don’t know where he is on the spectrum, it could be just for a year or several. Can he get SSDI too and are you linked to your County Board for Developmental Disabilities (formerly known as MRDD). That would give you a service coordinator for Bodhi at least.
    -Are you receiving any case management/social work services? This could help alleviate some of your stress.
    -Could you get a local film student to do a documentary on Jani? This would be a source of income and help educate the public.
    -I can’t wait for your book to be published, I’ll of course buy a copy and tell everyone I know to do the same.
    -Lastly, this is just my 2 cents. I think sometimes the fear of the unknown is worse than what the actual reality would be. Could you try and transition to just 1 apartment on a short term lease, see how it works and go from there? Jani is going to have to deal with many changes in her life and as hard as it is for her (and you) this might not only be necessary but good for her in the long run.

    p.s. I can never know exactly what you’re going through so please just take this advice for what it’s worth and I don’t mean to come across as a know it all. Just trying to help.

    Note from Michael: Jani’s SSI is $200 a month but is constantly under threat because she actually only qualified when she was in the hospital. Of course, I made more money back then.

    Bodhi is in the school district’s early intervention preschool. Unfortunately, lately it seems like he is getting worse. Mostly we fear he may be like Jani. With Jani having schizophrenia, he has a 50/50 chance of having it, too. We know he is mildly autistic or Asperger’s; mental illness we don’t know. I am not familiar with any of the other services you mentioned. We don’t have a case worker/social worker and never have unless Jani is in the hospital. And just by our experience the social workers we have had have not been terribly helpful (and that is being kind).

  12. thank you
    Thank you for writing this entry Michael, I know your time must be VERY limited. I think you have many people (like myself) who worry when there is a lag between posts, we fear the worst and I’m happy to see things are stable. Everything you say is right because you are the “expert” on Jani, I hope you know that everyone (with half a brain and an open heart) realizes that.

    I’m SO glad to hear that she’s making gains, the increased socialization is HUGE. I know you’re in California but I had a few suggestions from the perspective of a social worker who lives in Ohio (so take it for what it’s worth, just throwing out thoughts/ideas). I have a caseload of 33 families of children/teens who have an ASD so I’m coming from that perspective. Most of their children/teens are on the low-functioning end of the spectrum (also with mental retardation) and I think you would feel a kinship with so many of them. Many of the kids have episodes of aggressive behavior and/or self-injury. In extreme cases this happens several times a day and I work with many single mothers.

    -Your 100% correct about the meds and the “cost/benefit” analysis, fwiw my 33 year old best friend (and former adult clients at a community mental health center, many of whom were in their 50’s and 60’s) do fine on the meds as long as regular blood and liver tests are done. Yes, we don’t know the long term effects but I would argue that many people who smoke/drink/have a poor diet/are regularly exposed to environmental toxins are more at risk.
    -I’m assuming you receive SSDI for Jani, I hope so.
    -Would she qualify for Medicaid in your state? Even with your income she should because of the disability. If not, does your insurance company have a mail order prescription plan? Most of the time this cuts your co-pay down to 1/3 of the regular cost b/c you get a 3 month supply. Also, in my part of Ohio many psychiatrists have a Lexapro discount card available and/or are willing to offer samples to low income clients.
    -Can you get food stamps from your local job and family services? What about emergency funds (in our state it’s called ‘PRC”) Do you utilize local food pantries?
    -In our state there are special schools for kids like Bodhi who are over age 3, his school district would pay that school or “academy” through the Autism Scholarship Program. I work at such a place and we serve children/teens ages 2 1/2-22. He could keep receiving that critical early intervention and then of course transition back to a traditional school whenever you and Susan feel it’s appropriate. I don’t know where he is on the spectrum, it could be just for a year or several. Can he get SSDI too and are you linked to your County Board for Developmental Disabilities (formerly known as MRDD). That would give you a service coordinator for Bodhi at least.
    -Are you receiving any case management/social work services? This could help alleviate some of your stress.
    -Could you get a local film student to do a documentary on Jani? This would be a source of income and help educate the public.
    -I can’t wait for your book to be published, I’ll of course buy a copy and tell everyone I know to do the same.
    -Lastly, this is just my 2 cents. I think sometimes the fear of the unknown is worse than what the actual reality would be. Could you try and transition to just 1 apartment on a short term lease, see how it works and go from there? Jani is going to have to deal with many changes in her life and as hard as it is for her (and you) this might not only be necessary but good for her in the long run.

    p.s. I can never know exactly what you’re going through so please just take this advice for what it’s worth and I don’t mean to come across as a know it all. Just trying to help.

  13. Sending love
    Dear Michael,

    I just wanted to write to show support and let you know I have read and been following your blog. Michael, I check in often to see if you have posted an update and the last few weeks have been hoping the silence has meant good news.

    I wish I were in a financial position to help you and your family at this time. It takes a community to raise a child my friend and sometimes it means the community helps financially. When I am in the position, I will give and I will give proudly and with no regret.

    Please know there are more people who see what you and Susan are doing who support you 100%. If these drugs are helping your beautiful daughter live a life of happiness and contentment, THAT is what matters.

    Positive vibes and love to you and your family. I wish I could send more than that.

    Andra

  14. Jani’s Castle
    Just a few thoughts.

    Fellow Jani Boosters:

    Jani really needs her castle. I call it that because if you look at her apartment on the Discovery film, it looks fortress-like. Which is fine. Jani needs something solid.

    Anyway, I’m thinking that if, perchance, only 50 or so of us could pledge maybe $30/month, for apartment expenses, it would cover most of the rental cost of Jani’s apartment. And perhaps a little more could be donated for food.

    Jani may be able to live with Bodhi, but how soon is anybody’s guess.

    Anyway, just a suggestion for the readers. I know times are ruff.

    Note from Michael: Thank you, Carl, as always, for everything. I agree. One day Jani will be able to live with Bodhi but if we push too fast she may go over the edge again. Psychosis is not linear. It is recursive. Just because she is overall getting better does not mean that there won’t be setbacks along the way. That is the nature of the illness.


  15. It’s really no wonder that your youngest is developmentally behind when you look at all that he has to deal with. He is living in the shadow of his sister – he is forever being sacrificed for Jani’s good. His needs, his childhood, his happiness and his safety all come last to the people that are most responsible for him. And yet their hope is that he will grow to feel responsible for his sister and take over caring for her when his parents are no longer able to. What a disgusting reason to bring a child into such a sad life. What a horrible life you have offered him.

    What will you do if he grows to hate you? Hate Jani? What will you do if he refuses to give in to your whims of providing and caring for her? What if he decides that *gasp* he would like to live his own life? Do you not see what an awful position you will be putting him in?

    In the mean time, what will you do if you find that you truly cannot go any further? If the donations run dry from readers no longer willing to support not only the needs of your family but your own selfish wants. Cigarettes and cell phones with Internet and cable television, etc. You can justify these things any which way that you want, but they are not needs – every dollar spent on something that you want is a dollar not being spent on something that is very desperately needed. Why aren’t you cutting down on luxuries? Why aren’t you applying for food stamps? Why aren’t you visiting food banks? Why do you insist on keeping up the charade of everything being just fine?

    What will you do when your lease runs out and there is no option to renew? What will you do when you find yourself homeless and unable to find shelter for your family? I assure you, there is always the very real possibility of a landlord doing a Google search for your name and finding this very blog and being, understandably, cautious of renting to you and your family.

    What will you do as Jani grows older and harder to control, when puberty hits?

    You are not a child and you are not a schizophrenic – Jani may be able to ignore the future and pretend that everything will be okay, but you cannot. You simply cannot afford to any longer.

    Note from Michael: Axe to grind, do we? Wow. Don’t know where all this hostility and gloom and doom comes from.

  16. medication ‘choices’
    I, too, get the questions about how I could possibly give my son such ‘awful’ or ‘strong’ medications as a child and now teen. It is true that we do not know what would happen long-term if he takes them, but I know how he’s be short-term if he did not. Life is a crapshoot sometimes. You just have to do your best and make the best decision you can at the time.

    I’m so pleased to read of Jani’s connection with others and her medication stability.

    My best to you, Susan, Jani, and Bodhi.

    Merril

    Note from Michael: Merril, great to hear from you again. How are you doing? You can send me a message on Facebook.

  17. hey
    I’ve been reading your blog for a while now, and I gotta tell you, this last entry really got me. What comes through for me is not that you’re beggong for donations or even that you’re crusading for kids with mental illness. I see a guy who is completely and utterly in love with his children and would make any sacrifice for them. I get that the situation is desperate. I also get that you personally are on the ragged edge. I’m not going to tell you to “hang in there” or that I know what you’re going through.

    I have mental illness in my own family. My youngest brother has Asperberger’s and my ex-husband has schizophrenia and bipolar disorder which is further exacerbated by a childhood head ijury which gives him very poor insight into his own mental illness. We have a son together who is 10.

    WHen I divorced, people said all kinds of things. How could I leave someone so ill? What kind of person was I to abandon someone who obviously needed me? They didn’t need to tell me these things. I said them all and more to myself. I suffered crushing amounts of guilt about it. But I did what I thought was best for my son. I found myself explaining myself to him when I tucked him in at night. And one night he looked at me with his big expressive hazel eyes, his father’s eyes ironically, and said: “Mom, you don’t need to tell me. You’re a good mom and I love you.” And he smiled at me. He released me with that smile. It was like the sun breaking through the clouds after days of rain. I believe your children will do the same for you someday if you stay the course. After all, you have made the decisions that seemed best to you in an impossible situation. That is all any of us can do. All these people who tell you you need to put your daughter in residential or stop her meds and put her on a wheat grass and purified water diet don’t know the future anymore than you or me. If I could tell the future, I’d be a Hell of a lot richer, and you would be getting 30 grand instead of the 30 bucks I sent. So give yourself a break. Spend it on lamps for the turtles or Easy Mac. Go buy yourself a carton of cigarettes. Buy a fifth of cheap scotch and get shitfaced. Whatever gets you through the night. I give it to you with a free heart. No strings. 🙂

    Note from Michael: Well, thanks but no drinking for me. I don’t trust myself with that. I appreciate what you said but I don’t need them to thank me. I am not even sure they will or can. I don’t care about that. I just want them to be happy. That is all I need.

  18. From the possible future
    Michael,

    I have commented a few times and I have read every post on both of your blogs. I obviously do not really know you but I feel a great kinship with your family and your daughter whose story reminds me so much of much of my own except I didn’t have the addition of the support you have provided her. I want to stress to you that you are right to believe that what you are doing for Jani (and the rest of your family in the long run, for that matter) is critical and possibly an advantage significant enough to help her overcome her illness in time. Unconditional love is paramount if someone is going to heal from severe mental illness.

    The only thing I can suggest that helped me is being reminded every single day to fight against my illness and to not allow it to tell me what to do/think. At first that is impossible to do because one isn’t even aware of the line between clarity and psychosis. But slowly, over time, it comes. I was able to wean myself off most medication by the time I was 24 or so (not that I don’t still track my symptoms and intend to go right back on if necessary.) I really think Jani can do the same, and maybe sooner, if you continue to handle her with care. I realize that might sound ridiculous to you now (it probably would’ve to my parents) but you’d be surprised what an intellectual mind, disordered as it may be, can achieve if challenged in the right way.

    I also just wanted to encourage you to think seriously about turning to creative non-fiction writing as a means of making a living. After the first book you can surely come up with more ideas. You are a lucid, engaging writer and a very passionate man, and you have some notoriety. People will buy your books and talk about them. Good things will happen in mental health awareness. You won’t have to beg anymore. You’ll be able to work from home and be with Jani (almost) all the time.

    Lastly, although it is unfortunate that Lexapro has no exact generic equivalent yet, if I recall correctly my own regimen, Celexa contains nearly identical active ingredients with slightly different filler materials. It effected me very much the same as the more expensive formulary brand with the only difference being I had started to feel slightly more aggressive after being on Lexapro for about 9 months, whereas Celexa never produced that symptom and was a solid backbone for me for years after I came off my mood stabilizers and anti-psychotics. Worth a try if you haven’t; it’s part of the Wal-Mart $4/month program here.

    Note from Michael: No, it doesn’t sound ridiculous at all. Anything is possible. If I have learned anything through this, it is that anything is possible.

  19. THANKS FOR READING MY COMMENT!!!
    Thanks so much for reading my comment!.. it feels good to know that you take in what we comment. (except the negative comments)… and it feels REALLY good to know that jani has NOT had a slip up… I’m so sorry for complaining… I know you have a lot on your plate… I just get worried… I know it sounds strange… but i care a LOT about you and Jani and Bhodi and Susan… And i want to give u money… I want to help!!!… but I can’t… I don’t have a credit card yet… or a paypal.. or ANYTHING! (i’m too young)… I feel guilty… I feel like if i’m writing to you and bothering you and asking you questions… I should be contributing to the problem … u noe?… I’m sorry… You don’t need to hear my petty excuses… but i’m glad ur still writing your book…

    I can’t wait to read the book.. what is it about?.. is it about Jani… or bhodi… or your life.. or you thoughts.,. or all of it? haha!!! regardless of what it’s about.. I will be buying it!!… maybe thats a way that i can get you money?!?!?!?… thanks!!

    -Anonymous

    Note from Michael: I read all my comments, although I don’t always have time to respond to all of them, although I wish I did. It is just me here on this website. Nobody else. There is no barrier between the audience and me. To answer you question about what the book is about, the answer is all of it.

  20. Most people who criticize medication have never been in a situation where its life or death. When I first started getting sick my mom was adamant that I wasn’t going to start taking medication she had been with my dad for 5 years and he had been medicated for bipolar and because he cheated on her she equated medication as being bad. As I kept getting worse though she had no idea what to do. I remember her sitting up with me at 2 in the morning while I screamed saying that I had to hit my head off the wall I had to hurt someone I didn’t have a choice. I was being taken to the hospital by my schools councilors constantly for stitches because I wouldn’t stop hurting myself. My mom finally accepted the fact that I needed medication after a councilor called her and told her she was taking me to a doctor because I hadn’t stopped crying all day and barely wanted to move. She also had to accept the fact when I was hospitalized once when I was 17 and then another three times after I turned 18. She watched me scream and rage then cry and try to kill myself.

    Anyone who says that you medicate your daughter for attention or that you’re going to kill her don’t fully understand what you have to go through. Those who say she needs psychotherapy don’t understand that in people with severe mental illness psychotherapy with not work on its own (if someone is unstable their not going to sit long enough to listen and talk to a person). My mom was in your position before and I thank her now for helping me get through my hard times (and all the hard times that are to come for me). There is no manual for parents of mentally ill children they just have to make it up as they go along.

    Note from Michael: Thank you, Samantha.

  21. why?
    OMG!!! you know what!?!??… I’m going to ask you a question… so does bhodi have aspergers?… and GOD FORBID.. if he does get sz… will it be as bad as Jani’s?… and… did u get him tested for each?…

    my heart goes out to you!!

    Note from Michael: We don’t know. There is no way to test for SZ and no way to know if he sees things because he is not very verbal due to the speech delay. He is in the mild autistic preschool program in the school district.

  22. Control
    I don’t know if the need for control is common with schizophrenia. I know that Jani appears to sway close to it in her need for consistency. I know that I greatly need to feel in control of my own life. When I don’t and instead feel that life is getting chaotic and out of my control, the psychosis sets in, physical responses to stress appear, I lose control of myself which is the one thing I want to control the most. It is a terrible feeling, rocking back and forth or pacing and trying to wrap my brain around the idea that I still control somethings…trying to fight away the demons in the commanding voices I experience and convince myself that I can handle it because I am in control. But it might just be a facade because are we ever really in control? I’m not sure.

    Your efforts at keeping a semblance of control in Jani’s life are admirable. Through my first hand knowledge, I know that such a task can feel like climbing Mt. Everest.

    Note from Michael: I think I am the one feeling increasingly out of control, not Jani. This winter has been hard because now Bodhi is showing traits and we don’t know if it is autism or something else, but it is awful because he seems to be terrified of things we can’t see. He screams and cries out and we don’t know why. Jani was never terrified. Anyway, just one day at a time. That is all we can do. Bodhi may be fine. I don’t know.

  23. when does your book come out is it nex year in 2012? Also how has jani and bodh been doing lately?

    Note from Michael: Sometime next spring I think. Bodhi is not doing well. See comment below.

  24. I hope bodi dosen’t have autsim or schizophrenia and I hope that jani won’t have schizophrenia any more. Maybe it will go away

    Note from Michael: Jani is doing fine. It is Bodhi who is showing disturbing behavior. He will scream “no!” at the air and he looks up all the time, too. The difference is he if he is seeing things then he is terrified of them. Jani never was. I don’t know. Too early to tell but I am definitely worried. He has been inconsolable lately. If it turns out he does have it as well then all the people who told us to send Jani to a residential program to save Bodhi and give him a “normal” life can go fuck themselves sideways.

  25. okay
    We are on very different sides of the “debate” but I really don’t doubt you are doing what you see as best for your kid. The ones who tell you that you are killing her, believe it or not, actually care about her too… although obviously, not in the trenches like you. I’ve hesitating judging you as much as possible because I have a child around the same age, who is generally very easy, and I really don’t know what I would do. I just want the best for Jani, I think she’s amazing and wonderful and brilliant, and I hated the drugs myself, so that’s where I’m coming from. I really wish there were alternatives, places to support your family and Jani and keep her alive and well. That’s all.

  26. new developments in SZ research
    Well, as you know, my hypothesis is there should be a psychotherapy for kids with SZ IN ADDITION to the medications. This means they learn techniques to cope and get along with the hallucinations so that they can function somewhat normally and be more happy.

    Interesting NEW development shows we are on the right track here …

    01/18/11 — FROM THE ANNUAL PITTSBURGH SCHIZOPHRENIA CONFERENCE

    “Progression to Psychosis Increasingly Seen as Preventable”

    “The emergence of cognitive control and emotion regulation during adolescence are related to expansion of connectivity and fine-tuning of both excitatory and inhibitory neurotransmitter systems. At the same time, abstract thinking and executive function arise from increased efficiency at the expense of brain plasticity, or the ability of the brain to rewire itself in response to change. These processes might go haywire in those at risk for schizophrenia,

    For individuals identified as being at high risk for progression to psychosis, studies are suggesting that use of a variety of pharmacologic and nonpharmacologic preventive interventions during the prodrome might be of benefit.

    Cognitive therapy (CT) is another potential approach. A randomized controlled trial compared CT over 6 months with monthly monitoring in 58 patients who met criteria for ultrahigh risk of developing a first episode of psychosis. Those receiving CT were less likely to be prescribed an antipsychotic medication over the subsequent 3 years. While CT did not affect transition to psychosis using two different measures, it did significantly reduce the likelihood of progression to psychosis after controlling for baseline cognitive factors (Schizophr. Bull. 2007;33:682-7).”

    http://www.internalmedicinenews.com/news/mental-health/single-article/progression-to-psychosis-increasingly-seen-as-preventable/8c72a6764a.html

    Unfortunately, this is a brand new idea – psychotherapy for kids with SZ – but it is very promising. I think it could greatly help Jani, and I’m researching it. I found one called MCT for adults with SZ and I’m writing a free book to help parents teach it to their kids with SZ.

    I started a discussion thread about MCT for kids at the Jani Foundation on Facebook if anyone wants to see what it is:

    http://www.facebook.com/topic.­php?uid=120671644613521&topic=­357

    (* Click on my name to visit the Jani Youtube Fan Club. *)

  27. Your amazing!
    My thoughts are with you on this. Jani takes meds that may damage her body but also make her live how she wants too. How she needs too. That’s all everyone here needs. We are all on planet earth here nothing will be perfect. If Jani is happy then you have to face whatever setbacks that may happen from the drugs she’s taking. Even is you have to sleep her urine. Your her father and good one. Your doing what it takes to make it work. I know its hard to have bad days and depressing thoughts but that’s life. Its just the way it is. Trust your lives and I say continue what you are doing. Maybe it won’t be perfect in the future but you can do whatever it takes to try. Live for today, I’m sure you do. I think your doing the best you can. You should be proud. Try not to be so upset, things do get better. The grocery line thing also happened to me the other day and I was also embarrassed. I left the store with no groceries. Your not the only one. I believe you will all be happy living together and you will have money again and lots of helping loving people around. I wish I can also help and I will when the time comes. Til then you are surviving right! Take care. 😉 lots of love.

    C.C

  28. If BOTH kids are having hallucinations I would think this would suddenly open up tremendous interest at UCLA in further testing, such as lumbar puncture with studies on spinal fluid, blood testing for rare metabolic disorders, repeat MRI scans, etc. There is a one in a million chance you might get an “answer” that allows you to provide a specific treatment to both kids. There is a “undiagnosed disorders program” at the NIH and I would think they would be interested in TWO kids with hallucinations in the same family. Please consider pursuing this further, especially through the NIH. Some answers people have had include mitochondrial disorders that are treated with carnitine, coenzymes, etc. PKU – treated with specific diet therapy, certain abnormalities seen in spinal fluid, treated with folinic acid supplements, etc. The NIH would probably be your best bet, but UCLA second best bet. You really are in a rare situation that should have further testing for a specific “organic” cause.

    Note from Michael: Hi Debra. Well, first of all we have no conclusive evidence yet that Bodhi is experiencing hallucinations. His verbal skills are far behind where Jani was. It take longer to know for sure so there is no interest at this time, nor should there be until we know more. I wouldn’t want to subject either child to a lumbar puncture, either. That would scare the hell out of me. MRI is fine although the only way I got Jani through the MRI at UCLA was to almost crawl into the tube with her. I was half in and half out, holding her hand and singing to her her favorite songs over the roar of the machine. It would terrify Bodhi, who is much more sensitive.

    No, we just have to wait and see.

  29. There was a guy at the store the other day and dared me to dink a whole bottle of bleach and said if I drank the whole thing he would give me 10 dollers and then he keep pushing the cart into things and he was acting psychotic I wonder if he has schizophernia

    Note from Michael: Could be. Maybe he wasn’t sure if you were real or not. Remember in some cases (and unfortunately the homeless get no treatment) they reach the point where they can’t tell our reality from their own.

  30. does it bother her?
    I take ADHD meds and that has REALLY big effects on me.. but ADHD meds have been known to cause depression… (i think.. at least that is what youtube told me ) Does it bother Jani to have to take so many meds?.. and does it make her FEEL different?.. i know YOU can SEE a difference. But does it make HER feel different?.. DON’T THINK I’M TELLING YOU MEDS R THE WRONG DIRECTION.. CLEARLY THEY ARE THE RIGHT DIRECTION!!!!

    Michael… I’m sooooooooooooooooooooooooooo terribly worried about bhodi… .. pray… all we can do is pray that he is normal.. but what is normal?… If you have (GOD FORBID) 2 kids with sz then sz is normal… right? How old does he have to be to get tested for sz? I am praying for you.

    Note from Michael: I think she has gotten used to taking the meds. I wouldn’t say she loves them but she also knows when she needs them. She will sometimes ask for a dose when she feels she needs one. I wouldn’t say she hates them. Occasionally they make her feel tired but other than that it doesn’t make her feel different. But in her case she was completely non-functional and not able to enjoy life at all before so I think whatever she feels now is a small price to pay to have some happiness and peace.

    Thank you about Bodhi. Unfortunately, there is no “test” for schizophrenia. The anti-psychiatry crowd is actually right about that one. Diagnosis is made with extensive observation. Bodhi would need to be observed for years before anybody could even consider making any sort of diagnosis. We just have to wait.

  31. I have a friend that is a teacher and he has a student that is acting very disturbing he is in 4th grade and he is drawing pictures of people killing people and he says if he has a gun he will shoot people and he has violent outbursts.

    Note from Michael: Has he been sent for evaluation by the school psychologist? What about the parents? What do they say? Feel free to have your friend email me at michaeljohnschofield@me.com or come to http://www.facebook.com/janifoundation. He doesn’t have to use the student’s name so no privacy rights will be violated. I need to know as much about the situation as I can. I want to help.

  32. Quick question have either of your children undergone genetic screening? I’ve read recently about people who have a deletion in chromosome 17. Apparently all people with this deletion have some form of autism or schizophrenia (but not all autistic and schizophrenic people have this). Although this doesn’t offer any treatment options at the moment you could possibly use it to see if your son will develop any form of these disorders and then start with early intervention programs.

    (I commented about a week ago but I was reading new comments and thought I’d add another).

    Note from Michael: Jani’s DNA, plus mine and Susan’s, are currently being mapped by geneticists at Duke looking for any differences between our DNA and Jani’s. We have no results yet (in fact I am not even sure it’s done-it takes months to map the human genome) and I am not sure we will because it is a single-blind research. We would only get the results if they felt there was something to report and then they would forward that info to a clinician. As for for genetic screening on our own dime, it is too expensive.

  33. Hello, I am watching this show about January on OWN channel. I have had similar problems as a child that January did, in fact my whole life. I was FINALLY diagnosed in 2003 with Temporal Lobe Epilepsy. I want to make you aware of this diagnosis as it saved my life. If I may ask, has January ever had a been scan such as a SPECT? I am a patient of DR Peter Mueller, a neuro-psychiatrist in Princeton, NJ. I will gladly provide you with his contact information. I want to you to know that I have experienced a lot of what January has and want to see her get the help to prevent her having the life long painful experiences I have had. Sincerely
    Jeanine DeNitto

    Note from Michael: No, not a SPECT. In fact, I am not sure what that is. She has had an EEG and MRI done, but that is it. Neither showed any evidence of seizures. Her temporal lobe appears fine although the MRI revealed an ischemic area of the thalamus from a stroke event, probably in utero. She has since been evaluated by UCLA’s stroke team and they don’t feel she has increased risk of stroke. I am sure there are a whole bunch of tests that can be done but we are limited to what insurance will pay for (and they wouldn’t even pay for the MRI-UCLA ate the cost of that). We don’t have the money to pay for testing on our own.

  34. i watched your story when it first aired, and i just want to say that you guys are my heroes. you guys have been through so much more than anyone else ever goes through, and i admire how strong you all have been. please know that i am praying very hard for all of you, and that you are loved by so many people. just keep going and you’ll do fine. remember that this rough patch will end eventually, and all will be well again. i will pray for a miracle as often as i can, for you and especially for Jani.

    i also thought that maybe this would help you guys. she is the patron saint of those with mental disorders.

    Novena to Saint Dymphna (for the mentally afflicted)
    O God, we humbly beseech You
    through Your servant, St. Dymphna,
    who sealed with her blood
    the love she bore You,
    to grant relief to those
    who suffer from mental afflictions
    and nervous disorders, especially…

    (Mention the person’s name here.)

    St. Dymphna,
    helper of the mentally afflicted,
    pray for us.

    Glory be to the Father, and to the Son, and to the Holy Spirit; as it was in the beginning, is now, and ever shall be, world without end.
    Amen.

    hope this helps, and i’ll pray tonight that you have some peace of mind, at least for tonight, just to let you breathe a little bit.
    God bless you guys!!

    Note from Michael: Thank you, although believe me we are have not gone through worse than anybody else. There are many other families out there who have contacted us and that we know personally dealing with childhood mental illness and many of them have situations much worse than what we have.

  35. Mr. Schofield –

    ignore the crazy haters. ignore the people who think January shouldn’t be on medication. you’re doing a good job, you’re doing the best you can. i bet Jani has a bright future ahead of her. . .with parents as dedicated as you and your wife i’m sure she knows shes loved, and that helps her.

    my thoughts and prayers are with you and your family.

    Note from Michael: Thank you.

  36. seriously?
    It is absolutely unbelievable to me that people actually come to your blog, read it and then…how to put this nicely…there isn’t a way-talk shit about how you take care of YOUR family. Absolutely infuriating and illustrates perfectly why so many have lost faith in humanity. If people don’t like it, look the other damn way. It’s amazing how “big” being behind a computer monitor makes people feel, pathetic.

    Not that you need “reassurance”-we all (aside from the morons) know that you are doing your absolute best. Every parent second guesses choices they have made at some point and there is no shame in doing so. Hindsight is always 20/20 but Jani loves you and Susan, she loves Bodhi and she is coherent and playing with other children-if that isn’t proof of moving forward, I don’t know what is. So if morons want to talk shit and hate-the only person they are proving is an asshole is themselves.

    And on the donation front, “luxuries” have different meanings to everyone. Cable TV with two children who need stimulation (more so with Bodhi) well, that sounds more like a necessity. The internet is obviously necessary to you- you are a college professor for chrissakes. Students can’t wait long enough for answers to questions to wait until the next time they see you. And cigarettes? Well, coming from a smoker, they ain’t no luxury either. You are one person- you can’t work, take care of your family and Jani ect. ec.t and quit smoking at the time. What the hell are these people thinking?

    Like a previous commenter said- we CHOOSE to donate to you because it’s the least we can do. What the idiots who talk shit don’t realize is all the work you are doing for OTHER families as well, IEP work, ect. Those of us who donate do so without strings attatched. Whatever you need it for-whatever it is-it doesn’t matter. We want to help you, to show compassion and in some small way pay it forward to those who have a hell of a lot harder life than we do.

    So,once again, thank you for the work you do. You are doing the BEST you can for your family and those of us with brains clearly see that. What you are doing is bigger than what most of us would be willing to do for others. Please try and keep your head up. Ignore the bullshit.

    Note from Michael: Thank you, Synthia. That means a lot. Usually those comments roll of my back now because part of being in the public eye is there will always be people who attack me. But “Concerned” comments have had more of an impact because I am scared shitless of how much longer I can keep going. This month we missed rent on both apartments because we needed to buy food and diapers and gas. But what I don’t understand about “Concerned” is what he/she expects me to do? Give up? Send Jani to residential? I don’t get what his/her purpose is.

  37. I was reading an earlier response to a comment (on Feb. 3rd) about Bodhi screaming into the air and seeming to look at things that are not there.
    I am not a psychiatrist, but my brother is autistic and definitely not schizophrenic and he has done things like that all his life. It seems that he does most of his thinking out loud. He’ll have full blown conversations with people that aren’t there but he knows they aren’t there, he’s just practicing something he would like to say to them or wishes he had. It’s kind of funny, if you have an argument with him, the minute you leave the room you can hear him reliving the conversation with you but testing out a bunch of different responses that he could have fired at you! To be honest, I do the same thing, I just do it in my head! I bet when he gets more verbal, you will notice that these seemingly random vocalizations are actually rooted in reality, rather than hallucinations.
    Good Luck, my thoughts are with you.

  38. To all you
    I challenge you to put your money where your mouths are: If you don’t think the Schofield’s are using donations “properly” then don’t use PayPal – send them gift certificates from a grocery store, pharmacy or restaurant. Or go out and buy what YOU think is necessary for this family and give it to them. If the tables were turned would YOU like other people to decide FOR YOU what’s right FOR YOU??? Of course not-if you can’t say anything nice, don’t say ANYTHING AT ALL – didn’t your mother ever teach you that???
    What I see here is a family at their wits end dealing with situations most of us will never experience. These are human beings simply asking for help. They are NOT looking for “handouts”-these are educated, hard working people who simply have no choice but to put their children’s needs before their own. When the time comes, as it surely will, they will be in a position to be able to provide for themselves, but until that time, if you truly are “concerned” then show it appropriately to provide compassion and help only. If you can’t do that, then go away. Go back under your rocks where you came from..

    Dear Michael,
    I’m making a small donation this time but with NO JUDGEMENT on how you choose to use it – buy lottery tickets, cigarettes, McDonald’s
    My thoughts are with you, keep as strong as you can,
    Rhea

    Note from Michael: Thanks, Rhea, but no lottery tickets. That would be a waste of money! And you are right. We would love grocery store gift certificates: Albertson’s (Supervalu) and Savon pharmacy. McDonald’s. Denny’s. Anything. You can can mail anything to us care of Steve Truitt at Westwood One, 8965 Lindblade St, Culver City, CA 90232 (that is his work address). We can’t afford a PO Box and I am not giving out our address. Hell, if people want I will post the account numbers for our electric and gas bills. Our electric bill for the two apartments hasn’t been paid in three months.Electric account is Southern California Edison account # 2273205369. Probably insane putting this up but getting kind of desperate here. It is hard not to listen to “Concerned” predicting such gloom and doom for my family. Homelessness, wow. That hurts. It hurts because I don’t like living like this. I have a Master’s Degree. I am a college lecturer. I just have to pay for two homes to protect my children.

  39. How come you don’t put ads on your blog? You clearly have enough readers to get a lil’ somethin’ from it.

    Note from Michael: Good question. It is because I didn’t want to on principle. I don’t want people to think I am endorsing something that I am not. I also don’t want to sully the sight with advertisements and cheapen our mission.

  40. Correction
    Dear Michael,
    I just saw my post and the title was cut off – I wrote “To All You “Concerned” people, (And for those of you “concerned” people – I DON”T smoke, drink or only buy lottery tickets infrequently but I don’t begrudge Michael for smoking)
    I apologize for the rambling but when I read posts like “concerned”‘s it makes my blood boil. I wish I could do more. I sincerely hope donations start coming in to really help. It’s a cliche but if everyone who reads this blog just donates $10 or whatever, what a help that would be….
    Rhea

  41. I suffer also..
    from Depression and Anxiety Disorder. I have been in hospitals like Jani and I KNOW medication is ABSOLUTELY necessary. Effexor Xr has saved my life when I was so depressed I was in pain, couldn’t eat, weighing 80lbs. You are not killing or hurting your daughter, you are providing her with the best life you possibly can and that is the best a parent can do! I saw a few people in the hospital that also suffered from Schizophrenia so I know how umpredictible their behavior can be. Also, medication that works for someone may not work for another. Just keep your head up and know that you and Susan were chosen as the parents of Jani because you CAN handle it. God only gives us what we can handle although sometimes it seems too much to bear. Your family is in my thoughts and prayers!

    Note from Michael: Thank you, Jessica. Always nice to hear from adults with mental illness who are functional and doing well. Gives me a lot of hope.

  42. I dream of winning the lottery so I can take away all your worries. For right now $50 is what I can afford to give and can only hope it will help a at least a little.

  43. DEFINITELY utilize the food bank. They have mac & cheese, alfredo sauce, bread, eggs, etc & it’s free. No shame in using that resource as the food would go to waste if people didn’t use it. Glad to hear about Jani stabilizing a bit. 🙂

  44. Michael, you have mentioned many times that you don’t have the time or energy after dealing with Jani to invest in Bohdi, surely this is why he’s so far behind Jani when she was his age? I really hope that if he does have has SZ that you are able to do the same for him as you have done for Jani.

    Note from Michael: He has autism. I don’t see any evidence he has schizophrenia. But remember what you read is more my perceptions and feelings than reality. Bodhi gets plenty of attention from both us and he also (because of his autism diagnosis) gets services Jani never got.