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Still Haven't Found What I'm Looking For…

I’m cracking up. I didn’t realize it until today. I had started dinner for Jani and us, then had to rush out to take our dog Honey around the apartment complex so she could do her business. Jani was in Bodhi’s apartment with Bodhi, Susan, and a new intern. I was rushing because every time I am away from Jani I am always afraid the world will end in my absence. Or at least Jani’s world, which would take my world with it. I am always scared. Terrified is a better word. Not for what could happen to me. When Jani is with Bodhi, there is always a perpetual state of fear. Any number of things could go wrong. Bodhi might pick up one of her toys that she brought with her. We have tried to get her not to do this but a toy, usually a small animal toy, is like a security blanket to her. If Bodhi so much as touches her toys, she reacts even before we have realized what Bodhi has picked up. She will surge across the room and hit him before we have even had time to process what is happening. She is convinced that he will teeth on her toys and that his teeth with destroy them, even though Bodhi is pretty much beyond putting things in his mouth now. But like most toddlers, he is tactile and curious about anything he hasn’t seen before, yet such curiosity is dangerous for him. This is main reason why we got the two apartments, so Bodhi could explore his world without constantly being shut down by Jani.

 

Or he could knock over a bowl of food or a cup of water (we got rid of all glass), or worse yet, Jani’s water which she leaves around, causing her to lash out at him, punish him, even though we punish neither child for such things.

 

Or she might just be trying to express affection but in hugging him she will grab him around the neck.

 

Every time Jani is in Bodhi’s apartment (Jani will not allow Bodhi in her apartment so the only way to have dinner as a family is in Bodhi’s), while one parent cooks dinner, the other must hover between the two children, ready to intervene should the voices in Jani’s head sting her into hitting Bodhi. This leads to us even having to hover while she gives him affection, never sure if she is going to hug him or hit him or a combination of the two.

 

But once dinner is cooking (back burners only-front burner plates are removed for safety), one of us has to leave the other alone to take Honey out. I used to be able to do this with Jani. Jani used to love going on walks with me and Honey. Later, she would at least come along to take out one of her “friends” to go to the bathroom. Now she won’t come at all. To force her to come is to risk her attacking Honey or melting down in the parking lot, leaving me unable to take Honey and carry Jani back at the same time. Which reminds me, every time we go out in public with Jani, there is a risk, both to her and to others. Jani’s vision is, to our best guest, like having to watch two movies playing over the top of one another, meaning that it takes Jani supreme effort to focus on either one of the movies. One move, of course, is our world. The other is hers. She does her best to pay attention to both, which shows her incredible strength, but it takes all her effort just to focus on the humans interacting with her that she literally cannot see cars in the street or people in front of her. Crossing from the car to any public place requires somebody to hang on to her in case she breaks away suddenly, in case she forgets that our world contains large objects like cars that can kill her. Once in the public space, we must hover to make sure she doesn’t hurt some innocent child who asks to play with her. She wouldn’t hurt them badly, but she can hit them. Last week at a McDonald’s, a woman said to me “I hate to tell you this, but your daughter said ‘I hate you,’ to my son.” I had heard her. I felt terrible. But what could I say? I have no power to stop her. It is not an issue of Jani not knowing how to be polite. When she is not psychotic, she is incredibly polite.

 

This, by the way, is one of the ways in which you can recognize psychosis. It alters the personality.

 

I can, and have, taught Jani to be polite all her life, and she was once, and still, on occasion, is. But my corrections to her behavior pale when compared to whatever is inside her head. She can distantly hear my voice. She knows she is wrong. But she can’t help it. Lately, I have noticed that after such an incident, Jani will ask to leave. She won’t say anything about the incident, but I wonder if she is trying to remove herself from what can trigger her psychosis. But this also has the side effect of isolating further from other children. Adults will still let her odd behavior slide, because it is pretty obvious now that she acts younger than she is. Maybe they just think she is tall for her age. She acts like a four year old but has the language ability of a teenager, except that she is starting to slur her words now. Whether this is the psychosis or the medications designed to fight it isn’t exactly clear..

 

I am trying very hard to live with Jani’s illness, to make my peace with it, but the fear never goes away. Until Jani is in her bed and asleep, I am never free of the fear.

 

Not that I don’t fantasize about running away from it. I teach two days a week, meaning two days a week I go to CSUN. At the end of my classes, when I reach my car, it takes everything I have to turn the ignition. I don’t want to go home. I don’t want to be responsible anymore. But I have to. Jani is without me and she needs me.

 

What the hell does that do to a person, to reach the point where you dread going home to your own child?

 

So tonight I rushed out with Honey, unable to let her take her time and enjoy her walk, feeling guilty that she doesn’t get the trips to the dogpark that she used to get, or the two mile walks I used to take her on, at the same time, hating that I couldn’t just enjoy the evening, feeling like the minutes that I took to walk Honey around the complex was the equivalent of stepping out of the room while a dying person begged you for help.

 

I had to recharge, but to take time to recharge, even a moment, is to risk that one or both of my children will be hurt while I am gone. We have approximately 10 interns now, and a few days a week there is more than one intern on shift at a time. It is like a party for Jani, two, three, or even four people all focused on keeping her engaged. This is the first time we’ve ever had somebody to spell us for awhile. The only time I ever see Jani happy is when she is with her interns. But to relax for even a moment, to breathe, is dangerous because my reaction time slows. I feel a creeping apathy, a desire to lie down in the road and never get up, while at the same time feeling guilty because I can feel myself beginning not to care.

 

Next comes the paranoia, the feeling that close friends have failed Jani, failed us, that people I thought I could trust I can’t. I pingpong back and forth between the emotional extremes of apathy and paranoia.

 

Minor issues become significant. Instead of focusing on all the people I have brought together in the online support group for parents of mentally ill/spectrum kids I created, instead of focusing on the emails and people I personally know commending me, I focus on the ones who leave the utopia for mentally ill kids I am trying to create or the ones who criticize what I feel I have to do (hence, my bad reaction to the 20/20 episode). Soon I start to alienate people, blowing insignificant things up into personal slights. On a related note, I am pretty sure at this point that everybody related to the 20/20 episode from the other families to the producers are angry with me. The producers spent huge chunks of their lives over the past eight months working on this and really tried to do justice to the story and I privately pissed all over it.

 

When Jani does come home from being with the interns, or I come back from teaching, my reaction times are slow. I can see Jani moving to Bodhi, see what is going to happen, but be unable to respond in time. I stand there dumbly while Susan or an intern jumps in.

 

Next, I become indecisive. I spent three years making the decisions on Jani’s care. I fought all the fights to get her what she needed. Then suddenly I can’t muster the energy to continue. It all feels so pointless. If she goes back into the hospital, what can they do? They have tried all the meds. If she is not doing well in her hour a day of school, what can I do about? I have brought up ideas but nothing seems to work. The interns who sometimes go to school with Jani tell me that her teacher is disengaging, making minimal effort to teach Jani. I can understand this. Jani is practically unteachable now, and this teacher has already been teaching special ed severely emotionally disturbed kids for six hours. You can say you are going to keep going all you want but there is only so long hitting your head against a wall before you are knocked unconscious. I don’t blame her at all. Nor do I blame Jani. How can she learn when hallucinations swirl around her head? I don’t blame anyone anymore (much to Susan’s frustration, I think). She complains about the school and I am not sure what she wants me to do. I am not sure what to do anymore. I have no sense of certainty anymore. I used to, and the irony is I will still bitterly defend my methods for keeping Jani going (like interacting with her hallucinations), as well as believing, rather arrogantly that I am right and that if everybody would just listen to me I could save all these kids, and my daughter would have others like her and she would re-engage with the world.

Not that any of that is true. Jani doesn’t exactly react any differently when she meets a child with schizophrenia than she does to meeting a neuro-typical kid. Unless they have her sense of humor, and only me and some of the interns do, she will not engage.

 

Finally, I sink into despair, unable to muster the energy to even get out of bed, and I don’t until Jani hits me hard enough that I wake up.

 

I am not sure what caused this. It started long before the 20/20 episode aired, although that was a trigger. I hated seeing Susan and I fight all the time on camera. I hated seeing the other families pass judgment on what I have had to do to keep Jani alive, which they have done a few times before the show even aired. Both Cinnamon and Jennifer attacked me a few months back when I was so desperate for money that I was asking friends on Facebook (although not them) for any financial help they could give. I never understood why both of them jumped at me on that. It had nothing to do with them. I don’t know why I became to kicking boy for the other two families profiled in the 20/20 episode (especially since it was Susan and me who brought 20/20 to THEM).

 

You would think I would be focusing on all the other families who share my vision of mentally ill kids and families together.  You would think I would be focusing on the incredible things the ABC News producers said about me. I can’t even remember them. All I can remember is that I got criticized by a nine year old on camera, which is ridiculous I know, except that I saw this girl as another daughter. I comforted her when she knocked one of Jani’s baby teeth out in the hospital. You would think I would be focusing on the mother of a schizophrenic girl who called me a hero. No, I am focusing on the ones who attack me, which is in and of itself a sign that my mental state is breaking down.

 

I think it started when I started writing the book. Having to go back and recall Jani’s sudden decline ripped me open more than I expected. And that was just the basic events of the last three years of our lives. I had a series of events but no story. It took me a while to realize that the story was basically my relationship with Jani, which then required me to go back and remember the happy times before her illness came, when she was my little girl.

 

And that was even harder. I think that started to break me because it reminded me, painfully, of what I lost and what I will probably never get back. I know my daughter is still in there somewhere. She comes out every so often. But she has been so changed by the schizophrenia. I want the innocent little girl back that I had. I had to remember all the things I was able to teach her from 18 months-4 years, when she was a sponge, and to realize, painfully, when I ask her what she did during her one hour of school, that everything she “learned” was things I taught her years ago. It is like Jani’s mind is full now and has no ability to take any more knowledge, or the illness won’t let her learn, won’t let her practice, won’t let her fail or succeed. Everything that is left of Jani I taught her and she is still running on that now in the second grade where she refuses to learn anymore or do any of her work. I wonder how much of her IQ has been destroyed.

 

It is like watching Rome burn. Jani was my empire. Not this. Not the LA Times, Oprah, 20/20, the book deal. All that is just the chronicle of the destruction of what I built up, what I loved, and now I must watch her struggle to express any emotion at all.

 

If you are angry at me, I am sorry. If you think I am not the person you thought I was, I am sorry. I was only trying to save my daughter. I am still trying to save my daughter. But with each passing day it gets harder to see my little girl inside the schizophrenia.

 

Sometimes it is even hard to love her, on the surface level. Not on the deep level. On the deep level, I have been more than willing to trade my life for hers numerous times. I have tried bargaining with God on several occasions but God wouldn’t accept.

 

I love her overall, but minute to minute, second to second, it gets hard because she is black hole that sucks up everything I have to offer. At times like this, when Jani is slipping, there is nothing I can do to make her happy. And it makes me despair.

 

Today, I spoke to my father. He didn’t see the 20/20 episode, so I explained to him much as I did in the last blog: one girl got better, one got worse, and one stayed the same, which Jani being the latter. I told him it was depressing to see her end the show, which took eight months to film, the same way she started it. I felt that was a negative.

 

But my father disagreed. “Mike, if she hasn’t gotten any worse, that’s not a negative, that’s a positive.”

 

It took several hours for the old man’s words to sink in: She hasn’t dramatically improved like Becca, but she also hasn’t gotten worse. She is still better than she was a year ago.

 

Was my father trying to tell me that Susan and I had actually managed to hold the line? Was he trying to tell me that maybe I am further up this mountain with Jani than I realize?

 

I think Dad snapped through the paranoia. I know he hates me talking about him on my blogs (he had the misfortune to hear about my suicide attempt for the first time on the Oprah Winfrey Show), but he is also one of the few people I trust because he has no agenda (ironic, considering I do). Other than Jani and Bodhi, my father is the only person on earth that I am truly afraid of disappointing. What he feels about me means a lot.

 

I think perhaps my father, in his own way, was trying to tell me to remember what I have won, not what I have lost.

 

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15 comments on “Still Haven't Found What I'm Looking For…

  1. Wow…
    Amazing how you and I had similar blog posts – about grief and loss – right after 20/20. Maybe that just reinforces it – how hard it is. So glad your Dad was able to help you see things in a different light, as hard as that is.

    The exhaustion is real. The grief is real. The anger is real. It’s not good or bad. It just is. It simply exists, like all the other things that simply exist in our wild lives.

    What alarms me, reading your post, is how little you and Susan have the chance to take care of yourselves. Even with the interns and your living set up, taking some time for your own psyche is so important. As you’ve said, many times before, you are Jani’s best chance to stay in THIS world – if you don’t have the energy to keep going, neither will she.

    I’m super irritated at your insurance company waiting for her to hurt herself or someone else before they will ok and admission. I want to know who to call and badger, because that, to me, seems like a violation of the Mental Health Parity Act if ever I heard one.

    Hang in there. I know it’s rough. I’m thinking of all of you.

    — Chrisa

    Note from Michael: Exactly, Chrisa. Unless Jani goes back in the hospital or goes to residential, we have no chance to take care of ourselves. A hell of a choice, and one you know all to well.

  2. I saw the show and it affected me too. When the lights on your blog go down (even though I know this was due to tech issues), I know it might mean rocky times for yoru family. I have responded to your blogs a few times and am struck by how a child with neurological issues isolates you as much as it joins you with others. Your situation is not mine and mine is not yours but we have far more in common than we do with John and Jane Doe. I see them elsewhere on the internet talking about discussions they have with their children and plans they have for their children. My son didn’t talk when he was two; he doesn’t talk now as a teenager. He still idolizes early childhood heros like Barney etc. I held the fort alone last week when DH went to a work course; my son had some good moments, many tolerable moments and moments when he hits or throws things. I am teaching him here because there is nothing out there that I could be sure wouldn’t be more injurious to him than productive. If I were a more social person, I would have had stress cracks long before, but it is still so emotionally taxing to be me. But, I tell myself there is virtue in persistence; I am “Churchillian” (Ha! Ha!). I think you did the news show to let us know that we aren’t alone and that good things can happen with publicity. Perhaps, with time, there will be programs that can help our kids live rather than just contain them. I was also paradoxically glad that your program didn’t tout total recovery with this food or that vitamin or non-stop back-breaking therapy. Those reports don’t tell it as it is ; they are chimeras and mirages. If our child is above five, they probably won’t become a miracle. But- they are still valuable and still human beings. Thanks for being a voice. I hope that the spring brings better times.

    Note from Michael: Wow. Thank you. That meant a lot to me, although I too expect that I will end up teaching Jani. That is why one of the goals of the Village Project (see “resources”) is the creation of day school programs that specifically to spectrum and/or mentally ill children, where we fit the curriculum to their interests and not the other way around.

  3. Talking to the hallucinations
    FWIW, I think that engaging with Jani’s hallucinations is an inventive and creative way to keep her in tune with “our” world. If there is one thing I have learned with my own daughter, it is that no one has the answers here. There is no treatment, no therapy, no process that will work. Nothing. Parents are it. So even if the idea goes against everything you have been told, when other things aren’t working you have to do what it takes. Just like you can’t sit back and be a regular parent, you also can’t sit back and listen only to the established protocols for treating schizophrenia in a child because there aren’t any.
    However, the idea of going into the world of the child in order to try to pull them out actually sounds similar to Stanley Greenspan’s Floor Time technique, and using circles of communication. So if folks are saying you are going off in an unhealthy direction, there is a precedent.
    Hoping for the best!

  4. I think that it is amazingly brave of you to venture into Jani’s world in order to keep her safe. All of those other people can talk about what is right for their children, but YOU know what is right for yours. It is amazing that you have been able to keep Jani at the same place for 8 months. That is a major positive. SHE DID NOT GET WORSE!!

    Remember that you are an amazing father!!
    Wishing for the best

  5. I know it probably won’t mean much to you right now, Michael, but you are a hero. You and Susan and Jani and Bodhi. Your unflinching honesty about how you feel helps others understand a little bit about childhood mental illness and how incredibly taxing it is to take care of a child with special needs. Just reading about everything you need to do to try to keep Jani in our world exhausts me and you guys do it every single day. All day. I imagine you and Susan feel very alone sometimes but please remember that there is an online community of I don’t know how many reading about Jani and your family and many of us praying for you and your family. I hope that while Jani is in the hospital you guys can have a good rest and rejuvenate. Hugs to all of you.

  6. im so glad that the website is back. its hard to read that youre struggling (as always), but there are things youve written that i see as positive. its a positive thing that you have this outlet again, and positive feedback and support and positive energy sent your way. im glad to hear youre back to teaching, i know its hard for you to be away from your family, but i assume its good financially. im glad to hear the intern thing is working out so well, i remember reading from the start how much work it was to train these interns, so im so happy to hear that you have found 10 that you are confident enuf in to include them as some of the few things that keep jani in our world. im glad your dad was able to say something that brought you back to “our” world as well, i cant imagine how difficult it is to struggle with your child’s mental illness, while at the same time dealing with your own issues that stem from the work it takes to engage her, but also that i think were already there before you even had children.

    so kudos to you, for holding it together another 2 months.

    much love, positivity, and compassion to you, jani, susan, and bodhi

  7. Wow!!! You put it so well into words!! I have felt the way you are feeling many times but could never have stated it so well. I thought 20/20 was fantastic, amazing, and really truly captured the essence of parenting severely ill children. I look at your current state of mind as the irritability that comes before any major developmental growth in your life. You truly have to get to rock bottom before ideas begin to come in your head of what to do with the situation. When I feel like you describe, I realize something has to change as I can no longer go on, but usually it takes some Zoloft for myself as well to get out of the depression and get the energy to make the major changes. Jani needs functioning parents. You WILL find a way to keep on going and support Jani and the rest of your family as best as you can. You are at the low point, simmering and festering in it, soon, the developmental spurt will come in your mind and you will decide how to improve the situation in some way that makes it tolerable that you can keep going on in life. Then some joy will come back into your day as you sense some tiny bit of control of the situation. It helps to step back and remember the waxing and waning of tolerance/mood/sanity in yourself and to remember being in this state of mind before and how your ability to cope and function did improve. The dumbest things can make such a huge difference. I found that having one hour to grocery shop on Fridays alone in quiet made a huge difference in my ability to tolerate a week of constant onslaught. It isn’t much, but a guaranteed break for just you for an hour. And, with no guilt, as it is a chore that has to be done. We have a 4 hour break about once every 2 to 3 months as well with a highly paid intern. 4 hours to sit and eat at a restaurant as a couple, take a walk, and pretend we are normal. We try to go outside if at all possible during this time.
    Hang in there. You are not alone. You will soon begin to come up with little solutions to make little improvements in your life. You need to be mentally intact to help Jani so it is OK to do things to help Jani’s father. She needs a father, so please take care of him too.

  8. I just want to say that anyone who thinks one answer is the only answer is incredibly naive. Your family is the only ones I believe could ever know what is best for Jani. If you and Susan are the only ones she really responds to, is that not proof enough that choosing to enter her world was the right choice? I have Asperger’s Syndrome, which I would never EVER claim as being anything near what schizophrenia is, but I do know that the only way I ever responded is when people made and effort to enter my world. Why should I try to understand the people around me if no one was willing to try and understand me? That’s how I see it. So I hope you don’t lose any sleep over what other parents (and sometimes children) may think of your methods. They know what works for their kid and you know what works for yours to get the best possible result. It is foolish of anyone to say they are right and someone else is wrong. It’s as absurd as arguing science over religion. There is no correct answer, there is only what feels right for you.

    Note from Michael: Thanks for the support, but this has been a lesson to me because I do the same thing. I can be very arrogant and believe that my methods will work for every mentally ill child and that is not necessarily true either. I need to be more accepting of other parents’ decisions as well.

  9. Debra,
    Very nicely stated. I too have found that in the depths of despair you think you will never come out of it. Then that little glimmer of,what, light, hope, faith, something and I find the strength to go on. I always have to remind myself that “this too shall pass”. Michael and Susan hang in there.
    Marcie

  10. Watching 20/20 made me feel almost relieved. While I was not one of the four featured children/adolescents, their struggles reminded me so much of my own. The suicide attempts, wanting to jump in front of cars just to make all the demons in my head go away, the meltdowns – everything the episode showed those kids going through, has at one point happened to me. Having a show prove to me I was not alone brought such relief, especially since I was in the hospital when I watched it (those with good behavior can move to a room with TV).

    As for your methods of helping keep Jani at least partially engaged in our world, all I can say is that you know what works for your child. You’re the one that spends time with her, cares for her, and sees how she responds to different treatments and methods. I know for me personally, people acting as if my hallucinations were real would be extremely harmful. Almost all of my hallucinations are morbid, haunting and disturbing. They blame me for my parents’ divorce, call me worthless, and tell me to bash my skull into walls, commit suicide and homicide, cut myself, and other destructive things. I need everyone’s help – even on medication – to help convince me that the demons are not true, that what they say is false.

    That is, of course, the difference between Jani and I’s hallucinations. It is what makes me more like Becca. The world your daughter lives in, while it does have many fatal dangers, is not morbid or disturbing. She considers them friends, and nobody wants anybody to say their buddies are fake and unreal. As you have discovered, it would just push her away. So, to conclude this, keep doing what you know is right for your daughter. Yet also remember that just because it works for her, doesn’t mean it will work for me, Becca, Brenna or anybody else.

    Eri

  11. I’m at a loss for what to say, but feel the need to respond. Something in this last post finally hit home. Your exhaustion, both mental and physical, is pronounced. I could sense your crumbling defense.

    Your post brings up such bigger questions that we all must face. What is your job here? Is it only to take care of Jani? Is it to live your own life despite Jani? I don’t necessarily believe that we all have a ‘purpose’ for living. I feel that we can decide to have a purpose if we desire it. In your case, however, I feel that your purpose has to be defined in order for survival. Otherwise, it all becomes absurd and pointless.

    If you are going to be brought into a life full of doubt, struggle, fear, and challenges, then what can you do to make it worth it? You, even with your previously mentioned mental breakdowns, are relatively healthy and able to function. But your life has been narrowed down to one job: Jani. I keep thinking that something good must come from that. Or at least I’d hope for that.

    Because otherwise, what are we doing here? What can we do to make Jani’s life not only long but VALUABLE? What bigger thing can you accomplish with the hand you’ve been dealt? I want to see the reason for this. I want to see a reason for your life being the way it is. I would hate to think that it’s just bad luck and nothing will come of it. And I think you would hate that, too. Something could and should come from it. But what?? Is it your idea for the day schools? Is it raising awareness so researchers can find a cure? Is it something more personal? Maybe it’s so you can fully understand your own strengths and grow into an incredible human being…but that discounts Jani entirely.

    See why I’m confused? Who’s life is at stake here? Your life or Jani’s? I honestly don’t know.

    You mentioned not wanting to sacrifice one to save the other, but you already have. You’ve sacrificed your own life. When will you get it back?

  12. I hear you.
    I did not see the 20/20 episode, but I follow your blog regularly. I understand the wanting to go back, give up. My son, Keith (now 16) has autism. Every day, keeping him focused, centered, “in our world”, is a huge effort. It’s exhausting for me, and probably for him, too. There are times I’m sure his neurotypical brother (12) feels the burden too. We are making progress (Keith functions at a higher level than anyone ever thought he would, and makes more progress every year), but it’s slow going. I can only try to imagine how I’d feel if eventually my definition of progress had to become “not getting worse”. You mention a support group for parents of mentally ill/spectrum kids. Where can I find this?

    Note from Michael: It is a group I set up. Go to “resources” section of the site and click on “Online Parental Support Group.”

  13. Mental Illness
    Hi, I saw Jani’s story on Oprah and then again the other night on a news show. I really admire your courgae (of you and your wife). I have dissociative identity disorder and have struggled for a very long time to gain some control over life. It hurts me to see Jani having to go through the mental health system almost from day one. Soooo hard. 🙁 I will continue to follow your story.

  14. Throwing Stones
    Hi Michael,

    I’ve been following you and Jani since I heard about you on Oprah’s show. I have not commented before, because, quite frankly, I don’t think I have anything to offer you. I have two boys – 8 and almost 5 – who are healthy. What can I offer you but another contact with someone who has no idea what your life is like and who’s biggest problem with their kids is trying to get them to work to their potential in school and share their legos? But I do want to comment, I guess in the hope that you will find that maybe people are the same everywhere, no matter what the situation, and comfort that you are doing the right thing.

    First, I want to say something about how you have been affected by what people in the 20/20 episode said, especially Cinnamon’s daughter, about you interacting with Jani’s hallucinations. When I gave birth to my second son it seemed it was everyone else’s business to ask me if I was going to nurse him or give him formula, “wear” him in a sling constantly or just pick him up whenever. And the fact that we chose to let him have a pacifier when he was just hours old – you’d think we should be shot, if it were up to some. Now we send our kids to school when most around us homeschool. I had a good friend tell me I was crazy for doing that. If that’s how people react to a typical family with such common issues, it’s no surprise that you’re getting the reactions you are. You need to do what is right for your family. You aren’t accountable to any of them. Only to you and your wife and what is right by Jani and Bodhi. Everyone on this planet thinks they have have a right to comment on the lives of others (especially since the explosion of the internet, and now I feel even sillier for writing this).

    Also, to comment on your next post, about the boulder and everyone telling you that you need to take a break, a vacation, go on a date with your wife, etc. For a child, their parent needs to be their biggest advocate, and you are undoubtedly that for Jani. I have a cousin in his late 40s that can read and write at an almost normal level, but it’s not because of the state (his public school teachers that he had when he was young) but because of his mother. When he was 6 or 7 or so the school told her he would never even be able to read the word STOP on a stop sign. She sent him to school every day and every afternoon worked and worked and worked with him. For hours. It was her second job. It’s because of her that he can function. To the state, he was a hopeless case. You do what you need to for your daughter (and son). Only you know what that is. All those other people telling you those things sound like people who have “chosen to work in this field” but have no idea what it is like to live 24/7 with a child with this illness (I may be wrong about that, tho). As for those vacations, they are often a curse as much as a blessing, because they make it that much harder to return to life as you know it – not to mention you’d never have the peace of mind to leave your kids.

    So, let them throw stones. You just keep on keeping on. Jani can’t help but listen to the voices in her head, but you do have a choice to ignore those voices who think they know what is right for your family.

    On a last note, I want you to know I’m praying for all of you. I don’t know what your belief system is, and I don’t even know that my prayers will change anything. I just wanted you know.

  15. There is help
    Watching Jani’s story. While not as severe, my son was similar. He is 16 and now well thanks to Energy Healing. I can’t explain it but it worked miracles. If you are interested in finding out more, please feel free to contact me.
    Heartfelt.
    Chris