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The Blind Thousand Yard Stare (Lost)

I suppose I have to write an update on Bodhi. I have to because I am going to appear at the Jani Foundation Bowl-a-Thon fundraiser on Saturday and Bodhi won’t be there. And everyone who read my last blog “Screenwriter’s Blues” is going ask how he is doing. And I really don’t want to talk about it. I hate verbal conversations because they are either too short or too long. Either I give the short answer: “He is not doing well. He’s back in the hospital,” which will be followed either by “I’m so sorry,” or “What happened?” or both, and I will respond that he is still hurting himself. The person will wait for me to continue but I will say nothing more. Then they will tell me that they are praying he gets better soon, or that they believe he will get better, or we got Jani through this and we will get Bodhi through it too.

 

I let Susan handle the long version because she is better at talking. Susan will tell you everything that has happened in our lives in the past month. She will speculate to what Bodhi needs. That’s fine. That is her way of dealing with it.

 

The truth is I just don’t have the words. My friends keep telling me that I have been through this before. Like I said, they tell me that we got Jani through “this” and we will get Bodhi through it too. Even I tell myself that this should be easier because it is our second time “down the rabbit hole.” Alice knew what to expect the second time around.

 

But it doesn’t feel the same at all. It feels worse. Logically, I know it shouldn’t. Although distant, I can still remember feeling like I was losing Jani. Not in the beginning. In the beginning her conflict seemed more with society and I remember thinking if I could only remove her from society, she would get by. Bodhi’s conflict is not with society but completely internal. But, yes, I still remember visiting Jani inside UCLA in the spring of 2009 and seeing her lying on the floor, staring up at the lights. Then I felt like I was losing her. So if I have felt this before, been here before, why does it feel like I don’t know what I am doing again? Why do I feel as lost with Bodhi now as I did with Jani? Why does it feel different?

 

I honestly don’t know. I think seeing Bodhi, who because of his underdeveloped language skills, seems younger than he is, seeing him hurt himself, bite his hands, and when you take away his hands, he bites his arms, and when you take away his arms he bends forward and bites his thighs and legs. I think seeing that level of self-destruction is the worse thing I have ever seen. Maybe because Jani could articulate why she was hurting herself when she did, even if it didn’t make sense. Maybe it is because Jani is older now, not the little girl she was then. I find myself feeling like she was always older, always a little more in control, always a little bit able to make a choice. All that is bullshit, of course. I wrote a book stating the exact opposite. Maybe it is that Jani can make choices now because her psychosis is currently under control.  A dark secret that I hate about myself is that I resent her. I resent her health, her singing along to the radio when I am in the darkness, her planning dinner. Fucked up, I know. I now resent the fact that she can go on with her life while Bodhi is stuck. When Jani was acutely ill, I refused to move on with my life. I resisted the activities of daily living. I resisted any attempt to “live normally” while she was gone.  Along with Susan, I spent six years trying to bring her back and now I resent that she is able to move on with her life, just like I resented everyone else around me back then. Really messed up. I find myself in certain moments being shorter with her than I need to be, bordering on being mean. I am taking out my pain on her. I risk her stability by talking about drama in front of her that I should not.

 

God, I am fucked up. What the fuck is wrong with me? Take out my pain over the suffering of one child on the other child who has her own tremendous struggles and has accomplished so much. I was so wrong about Jani. She has accomplished so much more than I ever, in that spring of 2009, thought she would reach. Her efforts are heroic.

 

I have to stop. She has fought too hard to get her life back. She deserves it. I should not try to hold her back with me in my misery.

 

I am making it sound like she doesn’t care about Bodhi, which is not true. She is a wonderful big sister to him. Another thing I was wrong about. I figured his fate was to take care of her after we were gone. Now it could be the other way around. Logic tells me he will return and they will take care of each other, fulfilling what I had always hoped when I agreed to have a second child.

 

But I guess that is it. Logic. I don’t trust logic. I got lucky the first time around. The universe gave Jani back. What if it doesn’t happen again? What if I am not as lucky the second time around? What are the odds that the dice will fall the same way on the table again?

 

You would think that after Jani’s recovery, I would have faith. Jani defied the worst odds imaginable. But I actually have less. Maybe the real reason I get angry at all the Bible thumpers who write to me telling me to rely on our Lord and Savior is because I don’t entirely trust Him not to be an Asshole. No, it’s not that. It’s just that life is a numbers game. Chaos theory and all that crap.  It’s not that I think God is deliberately going to screw me this time. It is just that God is a craps stickman and he doesn’t control how the dice fall. The game isn’t fixed. It’s all mathematics and probability.

 

That has always been my struggle with faith. God isn’t calling the shots. He just tells you what the point is and it is up to you to try and hit it.

 

Faith is just wishful thinking. The dice are in your hands.

 

And that is the problem. I don’t trust my own rolls and I can’t pass the dice to the next player. I have to shoot. And I don’t know what I am doing. You would think after going through this with Jani, I would have some knowledge, I would feel more confident. And I feel like people expect that of me. They expect that I know what I am doing.

But I don’t. I don’t know what medications might help Bodhi. I feel like I am grasping in the dark because I don’t know what Bodhi has, other than autism. I can’t call it schizophrenia because I am not certain of that. I can’t call it bipolar because I am not certain of that. I don’t know if he is experiencing hallucinations. I don’t know if he hears voices. All I know is he is nervous and afraid so much.

 

With Jani, I fought. I fought the whole fucking world. I was ready to take on anyone to get her what I felt, what I knew, she needed. And I turned out to be right, most of the time.

 

I don’t feel that confidence this time. I don’t feel prepared to fight because I don’t know what I am supposed to fight for. I feel lost.

 

I just want him to stop hurting himself. I just want him to not be afraid all the time. But I don’t know what he needs to get there.

 

I don’t feel like I have been here before. Maybe last time, with Jani, my anger was my shield to avoid feeling pain.

 

This time I can’t muster any anger.

 

There is only the ripping of my heart out every time I see him in the hospital.

 

There is only the pain.

BodhiandmeSep21st2013photocreditAngieLussier

Copyright Angie Lussier 2013

Note about the photo: I wasn’t aware Angie was taking this picture. This was taken on September 21st, 2013, five days after Bodhi was released from UCLA and three days before he went back. It was a brief moment of peace for him.

59 comments on “The Blind Thousand Yard Stare (Lost)

  1. OH! I’ve never seen pictures of little boy B, only baby pictures! he’s just the cutest! I’m holding you in my heart and hope that you are seeking medical attention for your OWN mental health as well as your children, both for your own well being and to be the best you can for your babies and your lovely wife. I am holding all 4 of you in my heart. Hope the Bowl a thon goes well! Wish I was there to participate!

  2. I am unsure what his other behaviors are but I can assure you that the biting himself isn’t the worst SIB I have ever seen on an Autistic child. I have a student who will bite, slap, and punch herself-hard. She throws herself on her legs, butt, and back so hard one of these days I am afraid I will have to call 911 because she broke her back. Out medical team and her doctors only have her on seizure meds, nothing to help calm her down. Nothing helps her calm. She just stops when she is exhausted and over heated. As she gets older I’m afraid we won’t be able to handle her. She has superhuman strength at times! She will end up breaking herself someday. I fear for that day for her. She has a cognitive level of maybe a 6month old. When she is happy, she is very happy though and you would never guess she beats the shit out of herself and gets so angry she can’t stop multiple times per day. He may just have autism. Funny thing autism is. We will never understand it. Sometimes no matter what you try there is nothing more you can do.

    1. That is frightening. Is there anything the Jani Foundation can do to help this girl, her family, or you?

    2. Hi Micheal,
      in 2006 My son was born with Downs syndrome. After coming to terms with his diagnonses we decided to have another child. One reason was to have a sibliing look out for him but two years after his sister was born she was diagnosed with Autism and shortly after my son was also diagnosed with ASD.
      I hire someone just to help me get my daughter out the door in the mornings and she just seems to getting worse.
      Like you I feel lost and do not want to talk about it
      Like someone already mentioned take care of your mental health and well being as I am trying to do.
      Excuse any spelling or grammer errors as I am not a writer but really enjoyed January First!

  3. I can help you fight this, Michael. I was much like bodhi afraid of the world and nervous. It seems the doctors have autism correct not the latter. It seems bodhi has an underlying mental illness alongside his autism, that being severe ocd. Please read the ocd book that I gave to Susan, it will explain everything and help you in this battle. You guys are like family to me, I love you guys, good luck at the event, I am there in spirit.:-)

    1. Most days it feels like I am on Wonkas Wonderous Boat Ride, except Wonka never stops the boat. http://www.youtube.com/watch?v=2Zail7Gdqro

      It sure does suck doesn’t it? My 14 year old daughter has been in acute care since 9/13 and is moving to residential today. Yesterday I got a call from my mom that my only sister may have thyroid cancer. I wanted to cry but I had no tears left. I had the pain that goes along with crying but no tears would flow. Then my 16 year old straight A’s son told me he got an A on his AP Algebra II test and there were only 2 kids that made A’s in the entire class. So I put it on the fridge. That’s what I’m supposed to do, right? I try my best to smile and make his success in school a huge deal but half of my brain is still with my daughter. Wondering if she is in the “blue room” (isolation room) due to a violent rage or if she is participating nicely in recreational therapy. Is she learning more than card games from her roommate who has been in and out of juvi? Why does she pick her arms until they bleed? Why is her testosterone so high? Does Metforman, Prozac, and Geodon combine into some sort of toxic cocktail? Why does she think her invisible white cats are good and black cats are evil? Our cats are grey, what does that mean? What if we took her off all of her meds and moved to a house in the middle of 100 acres of wilderness. And oh yeah, today is my husbands 42nd birthday. I guess I should probably make a cake and wrap the present. Maybe I should get balloons or something. Would they allow balloons into the hospital or would they make me cut the strings due to the fact that a child could hang themselves with it? Should we bring the cake to the hospital or should I just bring cupcakes for her to share with daddy after dinner? A cake would require a knife. So probably cupcakes. Can you make german chocolate cupcakes or would that be weird? I wonder if my sisters doctor will call her this morning to schedule a biopsy. Can I just sink into the depths of my sofa cushions? No. I can’t. I have to be the strong one. I don’t have the luxury of sinking right now. I guess I should go shower. My son needs to go to school and I have cupcakes to bake. Where are my antidepressants?

      Hugs from me to you. I know it doesn’t help, but it’s all I have to give you. I’m sorry. Don’t sink. Keep swimming. It’s what we do.

      1. Actually, it very much helps. Thank you for writing. I want to invite you to our private online support group for parents of mentally ill children. I will send you an invite from my profschofield@att.net email.

    2. Ruben,
      I think that may be a very accurate guess, maybe that is not the right word, I don’t say it to offend. I never considered ocd with Bodhi’s behaviors but now as I look back at people I’ve met, it makes sense.

      1. I am glad you considered my observation. I was and still like Bodhi, except for the self-biting behaviors. My heart rate was around the 150’s at the worst, and I was afraid of just about anything. Please read the OCD book that I gave to Susan, it will help you to understand this mystery known as: Severe OCD. I know you are busy, but try to find a time to read at least a page a day. Good luck at the Bowl-A-Thon, and I wish Bodhi a speedy recovery. I will, hopefully, see you guys in October.

        Rubne Rafayelyan

  4. Maybe you think you are fucked up but it doesn’t mean that you really are. It’s up to you. You are upset, obviously, but it’s nothing wrong about it. This is such part of life that people can’t imagine that it really exist! But let me tell you what should make you stronger, faith and hope, that your kids would really be ok someday, in opposite to that parents who just realized that their kid is gonna die in a very short time and there is nothing that they can do about it. It’s your story, Mr. Michale – January First, “A child descent into madness and her father’s struggle to save her”. You should read once again your own epilogue. So you have to be strong no matter what because despite all of this situation there is for sure something you can do for Bodhi, like giving him love and beautiful day, like you did with Jani.

  5. I have personally been praying for your family since I saw the updates on Jani on you tube…I got your book and read it cover to cover in one morning. I admire your openness with the horrible emotions that you are experiencing. I know you said you don’t believe God has a plan, but that belief is the only hope we have in this world. He does love us and He does know what is best for us even when it doesn’t feel that way. Not what you care to hear, I know, probably sounds something like ‘blah blah blah’. Its okay. I just wanted you to know that someone is praying for you and your family. …even if you don’t believe. but can i just say…just like with your initial denial of Jani’s diagnosis, just because you don’t believe it, doesn’t mean it isn’t true. 🙂 thanks again for being brave enough to share your pain.

    Mixaleena

  6. I completely get your preference to write versus talk, the talking is exhausting. And your writing is sufficient, tragic, and beautiful…even the f-bombs because they are authentic and necessary. No platitudes from me this morning, because I know they wont help right now…only that my heart feels ripped open and raw for you guys.

  7. I think all your feeling are very “normal” considering all your family has been through. I am confident Bodhi will get better. MI, as you know, is like figuring out a very difficult puzzle. I hope the bowl-a-thon is a huge success!
    Peace to you and your family. always.

  8. I have no words. No 2 journeys are the same. You have not traveled this one before. Jani’s is different from Bodhi’s…as they are both different than my Brittany. No matter how much I love my daughter and you love your kids each path is it’s own journey through Hell itself. Each path comes equipped with it’s own unique set of torture and pain. You have not traveled this one before. I wouldn’t want your pain … and you wouldn’t mine. But know that there are others lost in this Hell with you. Your willingness and candor in your writings are like beacons of light for others like me lost in this Darkness. We read your words we remember that there ARE others lost out here in Hell…lost and in pain like ourselves…and that in an odd way we are NOT ALONE as we wander in the darkness.

    Thank you … I needed to see that light today.

  9. Michael…

    It doesn’t help, but all I can say is I have been there…twice with one child…one child who got lost into ‘autism’ at 18 months, and it took me 7 years to recover him. Then he fell out of a tree onto his head and suffered a huge regression (much like a TBI but docs say it isn’t). I feel your pain. I was never suicidal until I lived through the pain we have to watch our children suffer. It just isn’t fucking fair.

    Pax Vobiscum and love to Jani and Bodhi

    Kersten Rojas
    http://www.notautism.org

  10. There is not much anyone can say to comfort you. Hopefully, just knowing there are people out in this world holding you, YOU in our thoughts. You are an amazing warrior.

  11. you look so worn down in the picture. your raw honesty in your words is touching. I too live with a mental illness. All I can say is that I feel your pain and please, please keep up your fight. I’m sending love and thoughts of strength to you and your family. You are not alone. You are an amazing parent and care giver. Your children are lucky to have you.

  12. Michael,
    I often think if my parents were to keep a blog, they would say thing similar to what you have said. Like they didn’t expect their smart, first born to grow up and struggle with mental illness. Like Jani, I began talking early–I think around nine months. However, my….other skills were slower to develop. For example, I am 23 but still do not drive, mostly because I am so scared. But Bodhi is different from Jani, not just in age or the obvious things but maybe because you are walking new ground with him, that is causing you to feel such misery and uncertainty? Just a thought. I am just going on what your blog states.
    I know parents–especially fathers–put kids and wife first but, could you take sometime for yourself? I know that probably is a great deal and very difficult to do but I think you need it. I don’t have kids yet but I feel a need to put others first, like family, and I often feel worn down when I don’t take time for myself. Even if that time is just to blog or visit a counselor. I don’t say anything to be mean or harsh, just something to think about.
    Take care xxx

  13. You know why you are feeling so lost this time around. Bodhi is not Jani. As you said, you don’t know what he has, and he can’t tell you. There is nothing to stand on. There is no set path or steps you know need to be taken. Jani had labels and communication to help you help her, but you have none of that with Bodhi. It’s OK to feel lost. I personally think people who think they are in control of their lives have a lot to learn. You are doing it right. Whatever it is, even if it feels wrong, or you feel lost, it’s OK. You don’t need to know all the answers right now. You don’t need to be in control.

    Trust yourself and your instincts, because your heart is in the right place. You have more strength than I think you give yourself credit. No one has done what you and Susan have done and are currently doing. You are the frontiers of this fucked up, twisted, mental health roller coaster. So, give yourself a break. Remember that there is no manual for this bullshit. You ARE making it up as you go, and that’s alright. As long as you remember what you want for Bodhi, which is for him not to hurt and feel afraid anymore, someday, you will get there. But it will not feel like it did with Jani. It’s going to get a lot worse before it gets better, but I have been following your story for years and I know, whatever happens, that you are a good father, and Susan is a good mother, and though you don’t always feel it, you are helping them.

  14. There are so many parents who aren’t even able to muster up enough to be there, let alone to try to do more. My father is only able to “tolerate” my bipolar. That’s our “win.” I’m thankful you have a lot more “win” in you. Bodhi can see you and knows what you’re doing, even if he can’t process it fully. Sending love.

  15. Wow! You are so vivid in your feelings. And rightfully so. Frustration sets forth, I feel yours. I used to be so negative until my son went into the US ARMY. When he was home last christmas, he lost his dog tags, I found them after he left, and asked if he needed them back, I could mail them to him, but he didn’t. He said I could keep them, and I where them everyday, for the hidden message in his blood type..B POS. I know it might sound corny or ridicoulous but it does get me through each day.
    Having a mother who was mentally ill your whole life, and then the daughter, it is overwhelming and frustrating, that I feel they need to put me on mood stabilizers to keep up with her. The mind is so complex I don’t think anybody has the answers, and for me personally, I am so sick of their guesses. I need to move on and do the best I can for my daughter. And you do to. Your kids were a gift to you, no matter what, and they biggest thing you can give them is love and guidence and acceptence.
    Please don’t beat your self up over this, you need to remain strong, and one day there may be a purpose, it’s just that the answers may not be there yet. I used to get so mad because my mom was never and never will be able to be my mom, I mean she did nothing for me, besides give birth, but sometimes I look at a much bigger picture, that maybe her purpose was to teach me about my daughter and understand her.
    Besides it is never the situation that changes, its all how you look at things.
    I know you don’t feel you have much faith, and thats okay. Nor do I want to preach to you, but I will tell you I have faith and I will keep your family in my prayers. When my daughter runs away, (she left us in Washington DC was critically missing for 4 1/2 hours, I thought my life was over, Washington DC district 2 police are forever in my thoughts, they worked hard that day. None the less a mightmare for me, and I am sure my daughter (we are from wisconsin and never been to DC in our lives.) Then I get a call this past friday, my daughter walked out of day treatment, not once but twice, cops found her, brought her back, then she runs again. All I had left to do was give it to the Lord, and she ended up calling me from a police station far away from where she ran from, and each time I have to let go little by little. As hard as it seems, she has had more then two suicide attempts, and one day I don’t know if she will be successfull. This haunts me, but I need to be prepared either way.
    Too make my long story short, I still am going to pray for your family no matter what. And it is true, you only need faith as big as a mustard seed. I am not mad at God, and I don’t blame him, I can’t in my heart. For me he does takes things off my already burrdened shoulders…
    I hope you hang in there, and I loved your post, just felt the need to respond, I hope you don’t mind.
    Paula

  16. My thoughts on Jani’s ability to move forward while Bodhi struggles can be summed up as such: 1. She’s a child (duh, as if you hadn’t been told!). Her wisdom on this topic is beyond what other children have, but still, kids gonna be kids. 🙂
    2. Her deeper understanding of his struggles allow her to normalize his experience (maybe?). She sees what he’s going through and on some level intuitively knows that you and Susan will fight the good fight until he is as healed as she is. She gets his pain…but she also gets that this too will pass–level off–become a more distant memory once you get to the level of stability that you you found with her.
    And you know what? Every parent who rides this roller coaster has their pitiful moments. We all want to believe we’re ‘over it’, somehow numbed, impervious to the tragedy…but we aren’t. We never will be.
    Hang in there my friend. You and Susan are doing it all right. One day the Bodhi will be the one humming along to the radio while he makes dinner; hopefully you’ll still have a shred of your own sanity left and will be able to join him.
    XOXO

  17. Fuck life. If there is a “God,” like you said, he’s an asshole You got a shit deal. I don’t mean to sound crass, but these are facts, and i really just wanted to say them aloud. I’m with ya, buddy.

  18. let me first say that you are amazing.. you are a father to two amazing extrodianary kids who have problems and right now one child is fighting just like Jani did.
    I understand the anger and the resentment.. my child doesn’t have schizophrenia but she has a neurological condition that requires brain surgery and she has debilitating headaches.
    For the longest time I heard its all in my head that shes fine.. these issues shes having is just growing up and potty training shes just being lazy you have to push harder.. take her to a psychologist, take her to another doctor, take her to urologists, take her nuerologist who don’t give me answers but look at me funny and tell me its all in my head.
    We finally got a diagnosis about 6 months ago, that diagnosis has been a blessing and a curse.. I now know what is wrong.. we know how to treat it and we have carried out treatment for it but its hard.
    Ive cried, screamed, ive felt resentful at my other 2 kids for being normal, ive felt anger at my daughter for dragging me through this but never have a lost any love or understanding for my children.
    Your going through normal emotions.. believe me watching my 5 yr old go through brain surgery 2 short weeks ago and having to watch her in agony during recovery I just cried and cried.
    God doesn’t give you more than you can handle.. we must be the heavy hitters.
    You are right everything is life isn’t decided by God or Jesus.
    I just hope Bohdi can make a come back like Jani.. I hope Bohdi can stop hurting himself and live a normal life.. I hope you find comfort in Jani that even though Bohdi is not Jani that Jani has been at a point where you didn’t know what was going on..that answer will come on day for Bohdi just like it did for Jani.. once that answer comes fight it like your the knight in shining armor saving Bohdi from the dragon.
    Don’t lose hope.

  19. You’re exhausted is what you are. Who can blame you? A person can only take so much and you’re past your limit. Of course you are. On a technical note, you are a brilliant writer. Not that you need me to tell you that. But you write passionately and with raw emotion and with great effectiveness. If anything, just keep writing.

  20. I would agree with Ruben. I have felt like you feel right now for the past four years. My 8 year old right now is in short term residential care again. We have went through all the testing. ..all of the trying to find the specific problem so we can treat it. First they said Autism and they thought maybe seizures because she would just stop and stare. Her speech was mixed up and she was uncoordinated. Then the destructive behavior began. Her body was prone to infection due to all the sores. Then, when she started knocking her teeth out, the doctors started throwing in mental illness. First it was Mood disorder and then psychosis.. and then anxiety. Everyone started dropping different therapies because they were not working. All the doctors started saying that it was a mental illness coupled with PDD, and that the mental illness had just not pronounced itself yet. There was hoarding and paranoia that appeared last year. She has been hospitalized over 15 times.

    I say all this because, although she is in the hospital, she has a diagnosis. She is PDD, Severe Bipolar II with psychosis, and OCD. I am confident in her current diagnosis. We don’t have to guess anymore. I had spoken with Susan before online and when I described my daughter to her, she said it sounded a lot like Bodhi. The answers will come, even though it is exhausting for us. My daughter is the most complicated case that her psychiatrist has ever seen, and we have a long road ahead of us. I have three other kids in the home. Sometimes I just want to lock myself in a room and scream! It is almost like being an elephant in a circus. We have to be part of the show. We have to continue to keep performing to make it work. BUT we have that feeling sometimes that we are just going to run through the crowd and crush everyone. It is just a feeling though. We have been blessed with these special children because we have the ability to keep working despite our feelings.. the guilt.. the hate.. the frustration.. all of it! We hold on to the small moments like in the picture above. That doesn’t mean we can’t vent though. I do it often.

    1. Crystal, are you in our private online support group for parents of mentally ill children? I am going to send you an invite from my profschofield@att.net email. Also, would you like me to post your other comment with the video or not? I want to respect your wishes so I wasn’t sure.

  21. Maybe you knew what Jani needed because you relate better. She’s more like you personality-wise. You understand her better than you do Bodhi. Your personality doesn’t mesh as well with Bodhi’s. Maybe you resent Jani and get angry at her because you are projecting the dissatisfaction you have in yourself on her. Jani is an extension of you. You “fixed” Jani because you understood her. You don’t understand Bodhi. I suggest these things because when my son was growing up, our personalities were very similar. If he was having trouble at school or with an emotional situation, I understood what it would take to fix it because I knew what I would need and he is very similar. My husband on the other hand cannot relate to our son as well at all. He doesn’t understand why he does the things he does, why he thinks the way he does or even his sense of humor. Anyway, I’m rambling, but I’m just trying to help… It won’t be the same rabbit hole again. It could never be. Everyone’s brain is so different. Even if Bodhi had been Jani’s twin, the rabbit hole would still be different. Don’t worry about the what-ifs. Just take it one day at a time. You do not and cannot know what the future holds. Make the best decisions you can for today and deal with tomorrow when tomorrow comes.

  22. You don not have to post this as it is mostly for you guys, but am including a video of my daughter just a few weeks ago. One my name their is earlier video, but this is the most recent. I am having to hold her because she keeps trying to climb to get away. She tries to go out windows or whatever she can to escape. If you notice she doesn’t even recognize me when she is like this. She says I stole her. Sometime in the store, she does this and I get so many stares when she is trying to get away and screaming that I stole her and she doesn’t know me. She self injury mostly because she cannot feel pain and” it feel good to her”.She seeks out pressure things. She flips and jumps a lot. I feel it is hand and hand with the self injury. It is a sensory relief for her. We have found some things that help. Earmuffs help a lot! They calm things down around her. She wears them all the time. We have other things if you ever want to talk, you can email me.

  23. I don’t know if this will provide any comfort, but when I was Bodhi’s age, and for a few years more, I was self-harming. I bit myself, I ran into walls, and in my kindergarten class photo, I had a HUGE black eye from running head-first into a playmate. He was a little shorter than me, so he headbutted me by accident. I would bite other people, especially my sister. Sometimes, I would punch myself in the face hard enough to leave bruises or bleeding lips and gums and broken capillaries (I think I spelled that wrong..) in my eyes. One time, at school, I tripped over a rubber mat and gave myself a nosebleed.. blood everywhere…

    But within a few years of cognitive therapy and physical therapy, I sort of grew out of it. Even to this day, I still self-harm a bit.. never anything truly dangerous.. and I’m a lot less violent than I was then. I hope Bodhi can grow out of it like I did. I don’t know what else to tell you. I love you guys very much. (By the way, do you or your family ever Skype? I would LOVE to talk to all of you sometime.)

    So big hugs, big wishes, and a warm heart is all I have to offer. I wish I had more.

  24. With all due respect… grow up. You sound like a five year old being resentful and expecting these two kids will ever be able to take care of each other when they are adults. If that’s your plan get a new one but in the mean time being resentful is your problem. Knock it off.

    1. Hang in there the Schofields!!! Keep doing what you are doing. Remember that for every harsh and negative comment online, there are 1000 x more people who think you guys are great and would never say something to hurt you. You’ve been through enough.

      You wrote a long time ago, that despite getting lots of supportive comments online, its easy to focus on the negative ones. I think we are all like that. Negative comments are the reason that I don’t go on online forums much anymore and I expect a personal blog comes with its own pain, like that.

  25. @sam stone, I don’t think anyone can judge another human being until you’ve been in their shoes. Being a mother to a “normal” child has had it’s moments that have caused me to question my sanity, I cannot imagine going through these stresses daily. Patience is certainly not my virtue. To Michael, Though it may be of little consolation, I will keep you in my prayers. I appreciate your honest approach to this blog and to your feelings. Thank you for sharing them with us.

  26. I have felt your feelings. Many parents feel or have felt your feelings. We are our own worst enemies. I too wonder where God is. And I don’t believe in the saying ” God will never give you more than you can bear. ” As a registered nurse who has worked in the mental health field for years I have seen so many marriages and families torn apart. It is heart breaking. You have identified and shared your feelings, very cathartic in itself. You are not fucked up; you are human. BUT please know you and your wife AND children have helped so many people. To open up your lives and allowed people to see the struggles ya’ll (yes, I live in the south) have been through and are going through. Their feelings are validated. They don’t feel so alone. They can more easily handle criticism received from “well meaning friends and family” . The affirmations received are life saving. You and your family have given such special gifts.You are strong and will get through this. Do not give into guilty feelings. Cut yourself some slack. Please take comfort as I know you have helped so many people and you don’t realize the magnitude of your actions. I send strength, love, comfort, joy and peace. That is what helps heal the soul, the heart, and mind.

  27. I appreciate that you guys are so willing to share your journey through this maze of mental illness. I love your honesty and admire how you two are fighting to change how the mentally ill are treated. I have fought my own battle and continue to struggle with depression and anxiety and have been hospitalized for being suicidal. Now I am going through a journey with my son who will soon be 8. He was diagnosed with high functioning autism at 2 1/2 yrs old and ADHD at 4. He has severe anxiety and has sensory issues. Now we are entering into a new journey with him. He has become very agressive and angry. He will yell for hours on end when he doesn’t get his way or there is a change in routine. So he hits, pushes, kicks and spits. He gets to the point that he destroys things. We never know from one moment to the next what he is going to do. All the while trying to keep his 6 1/2 yr old sister safe since he goes after me and her and not dad. He will hit himself in his head. I often wonder if he will end up hurting himself or somebody else when he is in his rage state. He had been able to hold things together at school with some extra help and ADHD medication. But, this year is different last week he yelled at his teacher twice, slammed doors and knocked over a desk and chair then hid under the desk and refused to come out. It feels like we are living in a battle zone because we never know when he will erupt or when we will see the sweet little boy he can be. I don’t know where this journey will lead us or what is ahead and what other diagnosis he will receive. It’s like Dr Jekyl and Mr Hyde. We are meeting with yet another psychiatrist on Friday. We hope for some help and some relief. Besides suffering mentally he also suffers sever GI issues that we are trying to work on and see what the problem is. Now our daughter is showing signs of ADHD. So we are heading down the journey with her as we have an appt in 2 weeks to get evaluated. Most days are very isolating and the stress is enormous. But, I can’t give up or allow myself to break down or who will fight to get treatment and services needed for them. Thank you for all that you do and that you are willing to share your story. Mental illness can be very isolating. I pray that Bodhi will come to a good point like you have Jani at now.

  28. I am a high functioning autistic person that had a psychotic onset in his teens, so I am familiar with both child’s difficulties.

    Bodhi may have a great life. It is too early to tell because many autistic people are capable of making great progress. I couldn’t speak until I was five and was in speech therapy when I was seven.

    Firstly, Bodhi needs helpful services at a young age. Services will teach him how to communicate and substitute good behaviors for dysfunctional ones. However, you will have to fight the system to get Bodhi the services he needs. Delays in services can badly harm his progress.

    Secondly, please try to find out why Bodhi is biting himself. Many autistic people have sensory issues. Bodhi may be overwhelmed by irritating lights, sounds, touch or temperatures. If so, you will need to remove the stimulation. Many autistic people also engage in calming repetitive behaviors, called *stimming.* If this is the case, you may need to substitute other motions, such as tapping his foot.

    Thirdly, autism can be very brutal. Many autistic people, including me, suffer from Alexithymia. We have difficulty verbalizing our feelings, locking us in painful emotional reactions. This becomes most apparent in the teen years. You may need to use cognitive therapy to address this.

    Schizophrenics need to focus on concrete activities to stop the rumination and ground themselves in reality, but autistics need to spend years verbalizing their feelings to stop painful emotional responses.

  29. Your posting actually makes a lot of sense. It isn’t contradictory.

    Even though autism doesn’t have schizophrenia’s scary reputation, autism can be much harder to deal with because the child can’t initially communicate what is wrong. As a result, you feel in the dark.

    Furthermore, autistic people like me struggle with social nuance. We can learn about social interaction, but it takes time and structured feedback. We need to develop rules and guiding concepts to fit in. As a result, you are now becoming acutely aware of Janie’s understanding of social nuance.

    Please realize you may need to fight even HARDER now. Autism is widespread and well known, but it is badly neglected by a system that wants to save money. Special education neglects badly needed services and then ignores the children after pushing them into normal schooling. Parents aren’t provided the information they need. As a result, many autistic people fall through the cracks, especially as adults.

  30. Michael,
    I hope you remember me. You once helped me when my brother was in total chaos of aggressieness. Now that I read all about this fear bodhi feels, I can honestly somehow relate to him in fear, I suffer from panic attacks a lot and have learned to control though, and it certainly could be that he is hallucinating yet…Have you thought of the fact that he could be suffering panic attacks or a panic disorder mixed with paranoid schizophrenia? Maybe he hallucinates, gets scared and the rest come from the panic disorder.
    I’d suggest asking a doctor about panic disorders and the odds of bodhi haing this. I’m not sure it could be that, yet if he fears and totally loses control , I can only relate that to panic disorder.

    I understand your deep despair and how you feel, to me it is understandable that you can’t trust yourself now, Jani and bodhi are totally different, so you fear he may not get through this the way Jani did.

  31. It started when I was about Bodhi’s age. I was literally terrified of everything. I was afraid of being alive. So I tried to kill myself. Repeatedly. The feeling of sheer terror was so bad. Choking. Suffocating. It was so bad I wanted to die just to get away from it. I was 7+ then. It’s been with me all my life since. Everybody only laughed at me. I was ridiculed and mocked. Nobody helped me. They only made fun of me. My “family” and all the adults in my life found the sight of a young child trying to kill herself funny.

    I’m scared. I worry about the future. I can’t take care of myself, I need someone to take care of me. I don’t know what I’ll do without my caregiver. If she’s not here I’ll be forced to kill myself. What else can I do? Other “family members” don’t care, don’t want to help. What “family” then? No family. We are all alone. No help. I don’t want to die, I want to live. But all I can see is my future suicide. What else can I do?

    1. If you are on Facebook we do have a great private support group for adults with mental illness. The important thing is to not feel like you are alone. You are not. You can email me for more information at mschofield@janifoundation.org.

  32. To Michael:
    The way you write. It’s raw. It’s intentionally improper.

    It’s the perspective from a real parent, struggling with their kid’s real problems. Not over-dramatized. There is nothing unnecessary about it. It’s truthful and you do not minimize your struggle in any effort to sound stronger than you are. I find it refreshing. Saddening, but oddly comforting.

    I’m not a parent, but I am a patient. A young adult still struggling with my illnesses. But after following Jani’s story and reading a few of your blogs, I have to tell you, that your writing has helped me realize a lot about myself and my caretakers struggle with me. From an insider’s opinion, I think you’re doing a damn good job.

    More than a damn good job with your kids. You’re doing better than my parents did, by miles, just for the simple fact that you and Susan have accepted your child’s illness, and thus your child, as a person. Something I felt would have helped my progress tremendously growing up, if my parents would have. And that’s just a start. My parents put a fraction of the effort you have into helping your children, that they have into helping me, and I am doing reasonably well at this age, so I know that your kids will do exponentially better in the long run.

    And I think all this despair about Bodhi is because you’re exhausted.

    Just plain and simple.

    Caring for Jani took everything you had (and more) out of you, and now your son – the one who you, as his father, probably have so many things you want to teach him – is having a hard time, and you’re dreading what you’re afraid you might have to face, again. You’re going to get through it, just like last time. Even if you don’t want to or think you can. Keep it up man. We don’t expect as much out of you as you probably think. After all, it’s everyone’s first time living.

  33. My wife just gave me your book January First and it is fascinating. I have 4 step children with various diagnoses; pdd nos, reactive attachment disorder, bi polar, borderline personality disorder, depression, Aspergers and several other symptoms. We are dealing with mental illness with the middle two children who were neglected by their birth mother. After reading about your dealings with the hospital in Alhambra I sat back and thought, been there and done that. We have fought the various institutions tooth and nail to get our children help, only to be met with maximum resistance. The system is overrun, understaffed and underfunded. The amount of judgement out there is yet another obstacle we have had to overcome, that is something I am sure you good people have had to deal with a lot. Only the people who go through this themselves know what truly goes on in their mentally ill children. You guys are heroes in my book, good luck and god bless.

  34. I find it frustrating (and how unimaginably so it must be for you) how many people feel the need to say things like “please find out why Bodhi bites himself” as if you haven’t bothered to look into it, or the need to explain things like stimming, things you have so obviously encountered with Jani when autism was still hovering as a possible diagnosis. Do they think you’ve thrust him into the care of UCLA and forgotten all about it?

  35. I am sorry to hear you are going down the rabbit hole again. I myself am still wandering around wonderland trying to find my daughter, who lives in two worlds. One I see and one I don’t. This is such a lonely journey we take with and for our kids. My 14 year has PTSD with Schizophrenia. She has been fighting this since the age of 8. I felt so lost for so long, the doctors kept telling me the hallucinations, voices, and increased withdrawal were from the PTSD. I never really believed them, but I wanted them to be right because they said PT SD could be cured. At first it was in 6 months, then in 1year, and so on. Meanwhile she fell further n further into her own world and refused most personal interaction. All her friends gradually moved on. Our family grew more distant, I didn’t know how to make them understand what was wrong. 7 hospital stays n 5 suicide attempts weren’t enough to make the drs listen to me. It took her getting suspended from school for hitting her friend because the hallucination told her to, for them to finally admit her psychosis isn’t PTSD, she also has schizophrenia. They are saying residential care, I say NO! Isolation would be the worst thing for her, and she needs her family. Medicine has little faith in these kids ability to be the master of their illness. But It amazes me what she has been able to accomplish with support from me and her godparents. She is back in regular school-She has an IEP but has been able to maintain in mainstream classes and as long as the one on one at home is there, she is doing what I consider great. But it is exhausting. She is very bright and knows she is different, and it frustrates her. She longs for a place to fit in. I long for time to myself, as a single parent there is none, because of the unpredictability of the psychosis she can never be alone. So I work while she’s at school and she has a very special person who makes it possible for her to attend boys n girls club locally. This is just junior high though, and she is moderately psychotic even on her meds now, so we are trying something different again. These last few years have been like living in hell. The relative calms aren’t really peaceful because the storm can come crashing down at any moment. Here’s to hoping the new meds do something. I still hope for a great and productive life for her, but the odds are no longer in her favor, and I grieve for that. I don’t really know what my initial thought was in responding to this blog. But as I sit here typing, my daughter is still sleeping, she looks peaceful, but she will wake soon, and then it’s back to battle again against this beast trying to steal my daughter from me. And we are lonely. She needs a place where she can be herself without anyone judging her because she lives in two worlds, instead of our single one, and I wish for someone who actually has a clue what it’s like raising a child like mine. Who sees not only her illness, but her genius and is and sees the value battle to help her be able to function in our world. It’s nice to read of other families like ours-it would be nice to meet some, and for my girl to meet other kids like her -to make her feel less alone

  36. I spent my life wondering what the fuck was wrong with me. Diagnosis was a.d.d. When I was young but no one could figure why I pulled all of my eyelashes and some of my hair out. I’m not even sure I know, to be honest. In my adult life I’ve tried to find a reason for… The crazy. It’s always been “the crazy”. I don’t hear voices but I’m incredibly bad at life (not sure i could elaborate if i wanted to right now). I finally reached a diagnosis I can work with: bipolar 2. It seems to fit but I’m having trouble with the meds, they don’t really work. I’ve got one hell of a tolerance to psych meds. So I try new things every couple of months but I’ve been on seroquel for awhile and it’s working-ish. My point is that mental illness fucking sucks, it will always suck but there’s hope for Bhodi. He will be able to articulate what’s going on someday and he’s got two parents that never give up.. And I don’t believe for a second that you’d ever let him fade away for good.

  37. I have high funcationing austism/ mental illness, NOS (they know that something is chemically wrong but I don’t really fit any one diagnosis). I have always had a very hard time with self-injury, even with medication, intense therpy and family support its still a battle i have to fight with. One of the things that I do know is that sensory issues do make it worst. Also pain, even though I speak well, im not always able to communicate what i feel, so i created “pain” you could see to try and “explain” what i was feeling. I have both miragines almost constenly, as well as very bad intestonal issues.
    As for you feeling like this is diffrent about this time from Jani is that it is. Bohdi has Austism, and he is his own person with his own personailty. Even if they did have the same dignosis they are still two diffrent people and will always react diffrent to things.
    I know you are probley tried of getting advise but one things that does help me is weight and heat, i have these rice packs that you can put the mircowave and they weigh about 5lb someless some more. You can also get weighted blankets that weigh anything from 5 to 25lbs. so maybe it could help sooth him, also I know you said he wants to be help all the time, pressure vest may also be helpful or even a sleeping bag, that also helps me to sleep better.
    I am so amazed at what you are doing not only for your kids but all the kids in your community. Isolation is almost inharent in austism but also in mental illness, allowing them to feel “normal” even if just for a little while is a huge deal. Keep fighting, keep working, keep moving, you are changing the world
    Ps. Bohdi is a cuttie

  38. I had symptoms similar to what you’re describing Bodhi having here, when I was young. I would scream and thrash and punch myself and bite myself. It does get better, but there are things you have to do, and they have nothing to do with taking pharmaceuticals and being admitted to hospitals. Thr flat fact is, that when the body fights so hard as to do the things Bodhi is doing, it is actually a form of self-defense. The body is in an extreme state of fight-or-flight. It seems strange that the person commits aggression against themself, but that is actually incidental – their body is telling them to fight IN GENERAL, as if stimulated to fight against an external enemy, but they will often harm themselves as a fall-back position when the outside enemy is either too strong to confront, or can’t be identified because there actually is no outside enemy/ threat, just the body telling itself there is a threat present. That means the adrenal glands are producing too much fight-or-flight hormones like adrenaline. Cortisol is a huge culprit. Once my cortisol levels were lowered, I went back to normal. The important thing to remember, is that when cortisol is high, then the way he is acting is the way HE IS SUPPOSED TO BE ACTING. It’s the body doing exactly when it’s hormones are telling it to do. You should have him checked for an adrenal tumor that produces too much cortisol, which is what I had. or, alos, Cushings syndrome, which is something that makes too much cortisol.

  39. Pingback: [RANT] Michael Schofield – Worse Than Abuse | Tired n Wired

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