Everybody Wants to Rule the World (But I Need to)

If I could control the universe, Jani would be fine.


Why would I want to control the universe? Come on. Everybody wishes they could control the universe. We all want to control the universe because if we controlled the universe and its variables we could prevent ourselves and those we love from getting hurt.


If we could control the universe, we would have nothing to fear.


Calalini is back again. Our world, my world, Susan’s world, is at the mercy of the variables of our universe. Calilini, though, safe inside Jani’s head, is a constant.


For those of us who don’t know what psychosis is like, we imagine that having reoccurring hallucinations would make it impossible to have any sense of constancy, and therefore safety. But that is because we assume our world is constant, which is really just a trick of perspective. Our world isn’t constant at all. It is dynamic and constantly changing. In order to get anything or anywhere in life requires a constant process of negotiation with our environment, namely other humans around us with their own thoughts, fears, wants, and desires.


When I want something from you, I can’t guarantee that you will agree to give to me. If I want to do something, I can’t guarantee that you will let me. I have to state my case and hope for the best. Since I think we are basically good people, we will generally grant the wish of another person as long as it doesn’t come into conflict with our own.


So, even though you don’t realize it, from the moment you wake up until the moment you go to bed, you are praying that the people around you are going to help you do what you need to do and therefore get you through your day.


Now consider hallucinations. Even if they are scary, even if they come and go without warning, they are still more constant than anything in our world because their needs never change. I dislike the residents of Calalini because they won’t share Jani with our world, but they have a distinct advantage. They are constant. They never change.


The only way to keep Jani’s psychosis at bay, even with the medications, is to try and make our world as constant as possible, which brings me back to my first line: If I could control the universe, Jani would be fine.


Or would she? After all, I am a variable myself. Some of you read my last blog where I talked openly and honestly about me and Susan’s marital struggles over the years and feared we were on the edge of getting a divorce. We’re not. Even if I didn’t love Susan anymore (although I do now more than ever), Susan and I cannot divorce because we, like Hebrew National Hot Dogs, “answer to a higher authority,” in this case Jani’s psychosis. Divorce is a variable Susan and I can control and can shield Jani from, so it will never, ever happen, I can assure you of that.


Once again, we are reaching the financial limits of our ability to pay for two apartments. It is August 2nd right now. The deadline to pay rent is tomorrow, Tuesday. I don’t even have enough to pay the rent on one apartment, let alone two. Despite having earned a Master’s Degree and become a college instructor, I feel like I am practically indigent. Thank God this was my career prior to Jani’s illness become acute, because at least I can still (I hope) teach a class here and there and make some money, enough to put food on the table. If I’d had a traditional nine to five job prior to Jani’s psychosis taking off, we would literally be starving. Or Jani would be in residential in Texas and we would only have one apartment. Neither is particular appealing.


The other day, I had two people at different times come up to me and ask me if I worked for North Hollywood Ice Company. They asked because I was wearing one of their t-shirts. I said no, I got it from a friend. You think with everything else I have shared on this blog I could tell them the truth that I was wearing a shirt I had picked out from a bag of clothes donated to Jani’s therapist’s office, but I just said I got the shirt from a friend.


Fear starts to grip me every time we approach the end of the month and I get frustrated with Susan because she seems oblivious to our predicament. She isn’t. She just knows that saying something in front of Jani will shake her sense of constancy, which is the mistake I made. Part of Jani’s constancy is needing to eat out every day for lunch, which is getting more and more difficult to do. I mentioned as much, trying to force my reality on Jani, which was a huge mistake. Jani responded by refusing to eat that day, even when I suggested we go to one of her favorite places. “I thought you were hungry?”


“I’m not hungry,” she answered.


“Jani, it’s okay. I have enough money for Wendy’s.”


“No, you don’t.” She didn’t state it accusingly, just as fact.


Oh dear, what have I done? “Look, Jani,” I opened my wallet and pulled out a twenty dollar bill, my last twenty dollar bill. “See? I have money.”


Only then did she agree to go eat.


It was a painful lesson. I cannot force my reality on Jani. Her reality may conflict with mine but I have to find a way to make the two fit together. I suppose that sometimes I resent the fact that the reason I am so broke is because of trying to maintain two apartments just for her.


Another variable I can control. Eviction notices take awhile to work through the system in LA County so I can shield Jani from our money problems and I am sure something will come along before then. Remember, life is a series of good and bad things.


But not all variables I can control.


The strange thing about this blog is that I was going to write about how well things had been going lately. Through the month of July, Jani had been doing better than she ever had. The school district was providing her an hour of occupational therapy three days a week, which Jani loved, more than any traditional schooling she has ever had. In May, we couldn’t get her to work even her hour in school as part of her home-hospital care, but occupational therapy she was focused and happy and had no problems doing her hour.


And then on July 23rd, the summer session ended. No big deal. School starts again on August 11th.  She will only be without her occupational therapist for three weeks. Granted, when school starts she will only have once a week again until her IEP on August 25th when we can try to get the district to restore the three times a week (assuming her occupational therapist is even available three times a week once the school year starts and he has to work with a much larger student body again.


But it hasn’t been a big deal. In just a week, Jani has started to spiral. The first signs are innocuous enough. She starts talking about missing UCLA and wanting to call the staff there, which we allow her to do.


However, the other night, when we came over to Bodhi’s apartment, he ran up to her, wanting to wrestle and play, as they have been doing all July. Jani has been really great with Bodhi lately, affectionate and loving. But the other night, she pushed him away and said “Go away, Bodhi.” Of course, he just kept trying to climb up into her lap. “Go away, Bodhi.”


It was better than hitting him, but this is his apartment. The whole reason we have two apartments is so he can have his own space to do what he wants without fear of Jani. I had actually started to wonder if we could all move in together again but this was a strong reminder that she is still not able to live with him and he is not yet old enough to defend himself.


I told her “No, this is Bodhi’s apartment and you can’t control what happens here. If you can’t deal with Bodhi then we will have to go back to your apartment.”


But she wouldn’t move. She just kept pushing at him. It was like the last six months of progress had just been erased. I ended up having to pull her into the bedroom to keep her away from Bodhi. We couldn’t leave because I was still making dinner, Jani hadn’t eaten yet, and I couldn’t afford to take us out. Also I wanted the family dinner together. Bodhi is old enough to open doors and kept trying to go in because he wanted to play with Jani. He isn’t afraid of her and we want to keep it that way. But for that brief moment, it was like we were back living in one apartment, living in fear.


The other good thing is that Jani and I have been going to the local animal shelter. We have become unofficial volunteers, cleaning litter boxes, feeding the cats and giving them water. When Jani has a task of taking care of animals, she can work for hours. She has worked nonstop at the shelter for four hours on several occasions, with no mention of her hallucinations or any sign of a thought disorder. Officially, Jani can’t volunteer there until she is sixteen. Some of the officers and staff let her though, because they know her, know her story, know how hard she works, and are willing and able to bend the rules because it makes her happy to help.


Unfortunately, the officers and staff on duty this past Saturday weren’t those officers and staff. They were the ones afraid of being sued should Jani be bitten or scratched. They were afraid of losing their jobs. Or maybe they just didn’t want to make the effort.


Either way, I can’t control who is working at the shelter and whether they will allow Jani to help.


And not being able to help with the animals was followed that night by her pushing Bodhi and telling him to go away.


Today Jani was rapidly “decompensating,” even though a week ago she was doing great. Is not seeing the occupational therapist and not getting to help with the animals contributing to this? Almost certainly. Is there anything I can do about it? No. There are limits to how much I can control the constancy of Jani’s experience in this world. Things that are mild disappointments to us for her open the door to her psychosis returning. She can’t understand the temporal nature of not getting her way on a particular day, can’t understand that even if today wasn’t a great day, that doesn’t mean tomorrow won’t be, that even if this week wasn’t great, next week could be.


It is hard to get her accept the ups and downs of our world when Calalini never goes up and down. Calalini never changes.


In my old blogs, I used to rail against those who I felt stood in the way of Jani’s stability. Now I understand that it isn’t that they are standing in her way. It’s just that the rest of world doesn’t revolve around Jani’s psychosis.


And we do.




14 comments on “Everybody Wants to Rule the World (But I Need to)

  1. I’m probably missing something elemental here, but is there any way for you and Susan to do with Jani what the occupational therapist does? I have no idea what that would be – drawing, writing, working on puzzles – whatever it is that they do, could you do it with Jani instead, or is the whole point that it’s someone else, somewhere else, doing it… or is it that you have to know how to do it, have to be trained?

    THe working with animals is trickier – you obviously cant keep a house full of animals for her to take care of. I love the idea of the Jani Foundation, mentally ill kids and homeless animals living together, helping eachother… hopefully one day that’ll come true.

    One thing that struck me – some might call Jani not wanting to eat “petulant” but I actually thought it showed empathy – she knew you didnt have a lot of money and didn’t want you to spend it on her. Or maybe she was just being stubborn, who knows.. but I like to think it was because she had empathy for you and your situation.

    Keep your head up. xx

    Note from Michael: The occupational therapy is more physical stuff, tumbling, swinging, etc. There is specialized equipment. I suppose we could try with a playground but I don’t know if she would go through exercises for us. It is the person who does the OT, not so much the exercises themselves, not that I know what those are. So, yes, you do need training. I am rambling here but I think it is the person, not the OT itself.

  2. Jani
    Distressing. But I hope things get better for you, Michael. Despite what you say, it seems Jani is improving a little. Better, I think, than what you used to write about six months or a year ago.

    Anyway, based on your older blogs, it looks like it’s pretty close to Jani’s birthday.

    So I’m wishing Jani a happy birthday and I’m sure all Jani’s supporters are doing the same.

  3. Fear of ruling the world; terror of an unpredictable world
    Unlike you, the idea of ruling the universe makes me dizzy and panicked. Suddenly, everything and everybody would be under my control. What I said or did had the possibility of changing who they are, and the things they did. It would all be my responsibility. Essentially, the fate and blood of the world wound be in my paws. The strain and stress it must take to keep up with it and control everything, everyone constantly would wear me out. I would obsess over myself doing the wrong thing, and I couldn’t demand that I never do the wrong thing, because right and wrong are subjective. Making it so I always had complete confidence in what I did would be narcissistic, and forcing others to agree would take away what I could consider most important: independent thought. The choices and decisions would throw me into an anxiety spiral or psychotic break before I could even wish myself well (and I’m not even sure I would). Ruling the world seems like the worst possible thing for mine, or anyone’s health. Importantly noted, it is far easier – for me, at least – to accept and cope with the fact some greater force is responsible for the tragedy and mistakes of people, then to take it upon yourself to accept and deal with that everything that went wrong, and all the pain that has been suffered, was solely because you weren’t a good enough universe ruler: you were human.

    When it comes to constants, however, you could not be more right. Even though I am not near severe as Jani, there have been many – times infinity – times that change in something has sent me running into Marie’s (sadistic ghost that haunts and controls me) in-between life and death world. What goes on with that layer of existence is far from appealing. Marie is trying to drag me into her world completely (which entails that I die. Guess who she wants to make that happen), ghosts circling me, demons terrorizing me, spies (everywhere), messages in the form of everything from a radio to a rock found on the ground to what you’re saying, magical powers, a paranoia so intense I refuse to be alone for even a minute, and one nurturing spirit. I’m constantly on alert, and things that seem everyday and normal for you are interpreted as something much more sinister. She is always taking over me, where my affect will go flat, my voice monotone, and she whispers for me to hurt someone, and those ways are become more graphic (strangulating, stabbing, drowning). To fight her off, I lash out against everything but that person. Punching and kicking things, bashing my skull, making myself hurt, screaming at everyone, being mean to the targeted person, and sometimes lashing out in a less severe way at another person. It feels like I am fighting for my life; yet, my voice stays flat and you find no emotion on my face. If she is commanding or not, I have no impulse control, and will – because of impulse or command – punch something, bite myself, start running, or whatever else. I have spent times, thankfully short, that I have been mildly catatonic. The world is turned into a nightmare. Still, in times when the world shits more than I can bear, everything there stays the same. They do and feel the same things. It may seem random and sudden to others; however, it is all normal for that world, makes sense in my delusional thinking, and is expected. As terrible as it may be, I know what I am facing, and it is all familiar to me.

    To most, none of that makes sense. I am not, nor do I feel, safe when I am psychotic. Of course, from an outside view what is most obvious is that I do not cope better. My behavior and thoughts are unstable. I am not doing well, isn’t that black and white enough? What they miss is that all those behaviors and symptoms are everyday occurrences to them. They don’t criticize me or argue me out of my beliefs, and they don’t say I’m not making any sense. Everyday, they do the same things and I react the same. Those who wanted to hurt me still do; those that were angry still are; those that acted nurturing and calm still are; I had all the same powers and abilities day to day; and those I played with (their pets) and liked me still liked me and wanted to play. Real people and things are unpredictable, and that terrifies me. Even if psychosis is the thing that brings me closest to death, it is always the same.

  4. What I wish people understood; what I know they can’t; what I hope for Jani; and a Birthday Message

    Ironically, those around us experience it as scary, unpredictable and always shifting. It is horrifying, yes; but it is only random to the “nuerotypical” person. I wish people would understand that. That if they argue with me about my delusions, especially if they went along with them or made no comment yesterday, I will only anger and retreat further. To a place where I am always believed. That socializing is so hard when acutely psychotic everyone else is unpredictable, and that moment I cannot handle that, so the easy alternative is to go to those that always hate me, even though I am more unpredictable to you than any kid at school. And that taking away my delusions and hallucinations scares me. Yes, I am relieved to see most all of them go; but is a grieving process and reentry into a constantly changing world. I want to be stable; but don’t look at me as if I have eight heads if I sometimes yearn for them, even if they are Hellish. There’s a chance you’d feel the same.

    Then, however, truly emphasizing with that is impossible, and that is nobody’s fault. With mood and anxiety symptoms you can kind of imagine, as they are everyday emotions amplified to the point of disorder. When it comes to psychosis, though? It is a complete contradiction what this world is like, and you have no past experience to began imagining upon. I’m OK with that now and, to repeat something I’ve said earlier, not sure I would take those experiences away. Maybe make sure that I was stable from that point forward; but my mind works in a much more abstract way now, as I have experienced what it is like to believe and see the bizarre. Of course, I say that as someone who was lucky not to be treatment resistant, and I do not take for granted. Never.

    For Jani, I hope that the unpredictable terror this world must seem like right now shifts to something a little less scary soon. Even if the world has little constants, that she at least find some days that seem somewhat secure. If only for a short while, I hope she can find something in this world appealing, so that she’ll enjoy it present for a little bit. Of course, I hope that if her world has to be there and she has to go there, that offers some glimmer of what people like about this one: a friend, play, and some joy. Hallucinations or not, they are real to her, and the bond she has with them is just as strong as flesh and blood ones are. Even if we wish she had more of the human kind, I hope the ones in her world bring her some happiness and security. That something, in this, her’s, or in between realms makes all that fear and unpredictability worth being here, alive, and with us for at least today.

    Tell her a girl with psychosis from New York wishes her a happy Birthday, and that she totally gets not liking it when things change a lot. Hopefully, we’ll meet someday.

    With Love;

  5. Occupatioanl therapy!
    Hi Michael and family!
    I wrote to you, in response to a previous blog. I told you about there being people like myself, who love working with kids like Jani, as well as love the kids themselves! I don’t remember if I told you then, or not, but I am an OT. I think I have a good idea of some of the many things your OT is providing Jani. Ask her to give you an exercise program, and see if she will lend you a therapy ball. There are many ways to meet Jani’s sensory needs (all kinds of needs). It would be a good idea to incorporate the activities into a daily routine, which is a constant. It sounds like you have a great OT! Any questions just email me!

  6. Interesting article
    I found this online the other day, thought you might find it interesting. It’s an article about a recent finding between cats and schizophrenia…


    – T

  7. Unfortunately you’ll probably never be able to compete with the hospital (not to say you shouldn’t try). I know for me it’s almost as if the hospital exists in another reality I know several people who after being released from inpatient have walked right back into the hospital because the stress of just being in the outside world was overwhelming. The hospital shelters you from everything they deem too stressful for you. You can try and shelter Jani from everything but unfortunately life doesn’t work that way all you can really do is give her all the love and support you can.

    I marvel at what you and Susan do for your children, a lot of parents could learn from you.

  8. Being as impulsive as I am, I very rarely consistently and methodically check things, but yet I find myself checking Jani’s website every week, looking for a new window into Jani’s life. I find myself connected to Jani, I don’t know her, and I’ve never met her, but I don’t think that matters. Jani and I have something in common, something that only special people can relate too. We both live in our own worlds, and we live at the mercy of our minds. I’m not schizophrenic, but I fight against my ADHD, depression, and anxiety every single day. At times, I fear that I’m on the edge of a cliff, dangling between the real world, and the world I live in. The world inside my mind. I don’t have a Calilini, but I do have my own hell. I have my own “creatures” who steal me away from my family, from the people that love me the most. What makes me put a knife in my hand and threaten my mom that I will kill myself, I will never know. What makes me cry for hours on end? What makes me withdraw myself from the world until I have no friends? What makes my thoughts race at a manic speed? My own world of mental illness makes me do this. Most times I can’t think rationally. I’ve been on medicine for a year, which has turned me around 100%, but my mental illness is still here, and sometimes the medicine isn’t strong enough to fight it. I know I’m not strong enough to fight it, I can’t fight it. If I try to fight it, I’ll only weaken myself, I’ll only weaken the rational side of myself, until there isn’t anything rational left in me. I can’t fight my mental illness, but I can survive it. I can survive it because I find hope in strong souls like Jani. If you and your wife can find the strength to fight Jani’s Calilini, then I can find the strength to fight my own. I have happy days, and I have my better days just like Jani, but my bad days strongly overpower the good ones. My bad days help me to remember that I’m still at the mercy of my mind. I tried to stop therapy and find the strength to live on my own, but I’m going back this month. I just can’t do it. I wouldn’t dare quit my medicine, I tried that once, and within hours I was feeling suicidal. Before I keep talking anymore about myself, let me write I need to say. I don’t sympathize with Jani. I’m fighting with her. Jani and I, were fighting againist the one thing thats keeping us alive and the one thing that’s killing us, our brain. Fortunately, God gave us people who won’t give up regardless of finances, stress, our divorce. Parents who won’t let us become just another statistic. Parents who won’t give up hope, because they know we need hope. We don’t need tears, or sympathy, we need help, we need hope. Thank you for giving Jani and I that.

    Note from Michael: Wow. I think that is the best thank you I have ever gotten.

  9. hello
    I just wanted to post a quick thought on your lunchtimes. Would Jani be opposed to brunch? If not, could you start adding brunch to your day, at home? Once brunch is a normal thing…get rid of lunch. Next, start shifting brunch’s time up to lunch’s time. What I envision is that you would be a family that eats breakfast, brunch, and dinner.

    I get that the point of this post was about a much bigger concept, but this jumped out at me.

    In regards to the bigger concept here…I don’t think that I have much to say other than, “I continue to pray for your family.” If she had autism – I could give you a handful of good, sound ideas on dealing with providing constancy, yet still shaping things up so that she’d fit the world & not vice-versa…but this is not the case. I wish that I had more to offer. I wish that anyone had something more to offer.

  10. Fellow Schizophrenic has helpful tips for Jani, from an insider’s view.
    Hi Michael, the Youtube channel is up where readers can find all the videos and articles on Jani in one place if they want to learn more: [url][/url]

    Since I’m a fellow schizophrenic with a lot of the same symptoms as Jani I can really relate to what she is going through, and help explain what it’s like. I was in a psychiatric ward for a year and a half and I was in a psychiatric hospital for 11 days once, so I have a good idea of the “issues” as Becca says.

    I’ve been fighting the Voices for 20 years and I’ve learned some coping skills for schizophrenia that Jani might find interesting. Do you think she would find it interesting to hear about how someone else like her copes with the symptoms? I also wonder if it would help you and Susan to hear an “insider’s view” of what’s going on inside for perspective.

    I watch many of Jani’s videos and I can detect many of the symptoms I have too. I have taught myself Three Tips for coping better, which I would like to pass on to Jani and Becca, if you approve.

    You speak to controlling the world. What I did was order my “issues” from worst to least harmful and started at the top of the list looking for coping skills. The list seems the same for all schizophrenics:

    1. Violence against others
    2. Violence against self
    3. Being irritated by the Voices until the pressure builds and I stop negotiating/appeasing them, and start getting short tempered and ‘pissy’ with them. This causes me to first talk out loud “Shut up!” “Go away!”, then if I don’t stop being ‘pissy’ with it, the twitches and jerks start, then it descends to punching my head to get it out and getting nauseated, and then at rock bottom, The Voice energy makes me start biting my arm and lashing out at those around me. And all because I stopped just trying to get along with the Voices via debate, negotiation and appeasment, and started getting ‘pissy’ with it. I wonder if Jani has ever noticed this effect.

    The thing about the sudden violent outbursts is that because it’s a thought disorder, behavioral therapy won’t work, and even knowledge that it’s wrong which she has won’t work. Also external yelling at the Voices or threatening them, etc also won’t work. You have to approach this violence issue directly, meaning Jani, and directly talk about the violence issue with the Voices. What I personally learned at the outset was to realize that the Voices didn’t actually want me to hurt anyone.

    They are jokesters, Tricksters, and it is merely a test or trick to see what I would do. I still had to go through a mental negotiation/debate with the Voices but I never came close to crossing any lines. I was now conscious of the trick, and that power was gone. I’m hoping this this could help Jani too. If she does this then her first sub-conscious impulse won’t be to hit like the Voices told her to do, but to think this is a hitting trick form the Trickster / Jokester who doesn’t really want me to hit, but is just testing or tricking me.

    It’s the violence against others that has me really worried about Jani right now. She seems to be only sub-consciously aware of what the Voices are telling her to do, and before she can consciously, properly process it, she is already in the middle of the hitting behavior.

    Do you think this could help Jani? I didn’t explain it very well, but could in a simple, little essay for her. Do you think it might help Jani to know that a fellow schizophrenic totally understands her, and has the exact same problems, and has worked out some tricks that help him, and wants to be her friend?

    I’ve been around the block, seen it all from the inside, and have learned a few tricks along the way. A crazy ‘big brother’ for Jani – maybe she would really like that! Do you think we could try something like this?


    Note from Michael: Actually, Ken, I thought you explained it very well. I really appreciate this.

  11. Hi Michael, Ken again from above. I thought you should know that I have an IQ of 135 and have been keeping a diary about the Voices, what they were doing, what I did to stop them, and the results. The diary is just called Hearing Voices: My Battle between Madness and Logic. I write it for therapeutic purposes. My main coping skill was to convert all thoughts to logic formulas, and I became a bit of a logic expert. But since schizophrenia is a thought disorder, it seemed reasonable to study “ordered thought” or logic, and it has taught me some tricks and helped a lot.

    Someone on Youtube asked me what it’s like for me to have schizophrenia and here’s what I wrote:

    “Threw every med known at it, didn’t stop. Very rare for full stop once started. I hear Voices. Don’t want to. They ruined my beautiful life in Hawaii. Crashed. Into room in father’s house in PA. 11 days in psych.hosp.11/2 years in psych ward. Did I want that?? NO. If I could control it I would have, and stay in beaut. Hawaii! You see? No choice. Very real. Always watching and talking Judging my thoughts, my judgments.Trying to trick me. Paranoid its trying to kill me. Fear. No Peace.”

    And he then asked me for more info, and I wrote:

    “1st time it happened I was 10, living idyllic life on 3 acre 5 bedroom country house w/ both parents. Rode my honda 50cc motorbike for hours on end every day. It was great. 2nd time I had moved and had a great life in Hawaii, 21 and buff and tan, a cool job on the beach, surfin Waikiki every day – an awesome life, no persecutors. Then the Voices came back and got nasty and it ruined me as I explained before.”

    Maybe that helps give you an insider’s view that might help you understand it better. I have been diagnosed with severe and persistent schizophrenia, see a psychiatrist every 6 weeks, and have the medical paperwork to prove it. So I’m the real deal, and really think I could help Jani as her in-the-know “schizoic big brother”.


    And, a Big Happy Birthday to Jani!! YOU GO GIRL!!

    Note from Michael: Thanks, Ken. You are a good guy and your insights are very much appreciated.

  12. Hi Michael and family/ My first comment, although I faithfully read your blog and keep up with your news and musings. I’m an adulttormented by multiple mental/neurological disorder. Oh well, whatever, nevermind.

    What I signed on to say is: Happy Birthday to Jani and I’m wishing y’all the best of days. I’ll light candles in the morning – that’s as close to prayer as I ever get, but it seems to help in some uncanny way.

    Note from Michael: Thank you, Elisabeth.

  13. Special Education Teacher
    I just wanted to let you know that Jani has the righ tto receive all the related services she needs from the school. It doesn’t matter how big their case load is. The school district has to meet her educational needs based on IDEA and ADA. Many times school districts try to opt out, saying therapist have other kids and what not. Indeed they may, but if Jani’s iep goals require OT services and it helps her, the school has to provide it, bottom line. You need to contant protection and advocacy normally a phone call from them will straighten things right. The school should be sending supports to you if Jani is unable to tolerate school. That is her right and I think it would be worth your time to fight for all the OT you need. My love for advocacy is what got me into education to begin with.

    Note from Michael: Thank you, Nicole. I will remember that. We have another IEP coming up in a week.

  14. I used to be in occupational threapy. It was fun they had a swing and a trampoline in my school and they made me play and I was 15. Does jani like it. I was required to take it all though I was the only student in the class.

    Note from Michael: She loves it. She needs things that engage both her mind and her body.