MyBlog, MyBlog , , , , , , , , , , ,

Automatic for the People

Susan tells me Jani once spent Christmas inpatient at UCLA. She tells me that I had to take Jani back on December 23rd, which is Susan’s birthday, and she was holding Bodhi and crying.

 

I don’t remember this. That bothers me. It makes me feel like I can only focus on one child at a time, neglecting whichever one is not in crisis.

 

It’s funny those that read January First and criticize me for my constant harping on Jani’s IQ of 146 in the first half of the book. No, funny isn’t the right word. I am not sure what the right word is but suffice it to say that there has been a karmic revenge for that. Jani’s current academic skills range between third grade and her actual sixth grade level. Mathematics is the area at grade level, while reading comprehension lags. She struggles with the drawing details from a story. She struggles to hold onto a plot point that occurred on the previous page.  Some things stick in her mind and others do not. Pretty much everything I taught her in her early life, pre age five, is gone.

 

I thought about this tonight as I changed Bodhi’s diaper at UCLA, thinking perhaps a fresh diaper might help him fall asleep. Bodhi turned six years old this month. He can use the toilet but generally will not do it on his own. You have to take him and pull down his pants. Outside the hospital, this has to be done about every hour to avoid him wetting himself and of course the nursing staff are not going to do it that often. Of course, now they are treating him for diaper rash. At six years old. Jani never had diaper rash. I was religious about changing her. I never wanted her to exist with a wet or soiled diaper. No bladder infections either. Whatever my failings as a parent, I at least got that right.

 

Jani resisted potty training and Susan actually got her to do it at four years old by bribing her with a diaper, of all things. That was the only thing that would work. She was terrified to go without the diaper and that terror drove her to use the toilet in exchange for a diaper. After that, she never had an accident.

 

Bodhi never cared.

 

Over the years at UCLA, I have seen older children, severely autistic, in diapers. One, a boy who was twelve, stands out to me the most. I suppose what I am confronting now is that the body will keep growing, with or without the mind. I have a dear friend with a 15 year old daughter who has schizophrenia, among other maladies. She has to wear a diaper when she is on her period because she doesn’t react when she bleeds all over herself. Not that I expect that will happen to Jani. I don’t know how Jani will react but I suspect, given how she freaks out at a thin line of blood from a scratch, it will not be good. Jani is terrified of having loose stool and believes she is having it when she isn’t, even reaching into her pants and pulling out her hand and smelling it. This is despite the fact that her bowl movements are as large and as big as softballs, so much so that I have to get a plastic bag, the same baggies I use for the dogs, and break it into pieces so it will flush.

I have no idea why I am telling you this. Random people I don’t know on the internet criticize me for how I have “portrayed” Jani, telling me she will one day hate me for revealing such things about her to the world. I actually hope they are right because if they are then that means she will have recovered enough to care about her image on a macro scale. That would be a hell of an accomplishment. But she has to get there first. That kind of hatred, non psychotic hatred, requires a type of awareness and reflection that Jani is not yet capable of. Should she ever reach that point, then whatever judgment she renders upon me will be immaterial to what she has achieved by simply getting to that state. That would amount to essentially full recovery from schizophrenia. I guess I would trade her full functioning for her hating me. Seems like a small price to pay to me.

 

Bodhi, Bodhi, Bodhi. I still find fresh bitemarks on him. And bruises.

 

It feels like we are going around and around in circles. He has been inpatient for more than a month now, which is starting to feel an awful lot like Jani’s four month stay back in 2009. For two weeks there was no self harm, leading us to focus all our efforts on his environment outside the hospital, as he seemed to do better there. Then, in the third week, it began there, just like it did at home.

 

Four weeks in, after originally discarding the idea, the doctors wanted to try Adderal, a stimulant used in the treatment of ADHD. Given Jani’s reaction to stimulants, there was no way in hell I was going to try that outpatient. For Jani, Adderal and Ritalin, the first dose was like L-Dopa for Oliver Sacks’ encephalitis lethargica patients. It was a miracle drug. All of her aggression disappeared and she was actively engaged with other children, including carrying for younger ones. She was also happy, happier than I’d seen her since she was a toddler. I didn’t realize at the time being high makes you extremely happy, and stimulants make you high if you are not ADHD. Once the high wore off, she crashed with a ferocious bout of violence, with follow up doses having no effect. So, after two of these crashes and a heart racing so fast I was terrified she would go into cardiac arrest, ADHD was abandoned as a potential diagnosis.

 

Bodhi hasn’t had that reaction. It has wound him up, which is then followed by what the nurses call a “temper tantrum,” followed by nakedly autistic behavior where he doesn’t engage at all. Doesn’t even acknowledge our presence. Just lines up his cars. When I visit him later in the evening for his bedtime routine, he is back to being alert and engaged.

 

Some nurses will confess that they can identify no “antecedent” for Bodhi’s “tantrums,” that “most of the time they seem to come out of nowhere.” It has been described to me exactly like this: “One minute he is fine and then the next he is throwing a fit and then the next he is fine again.” Bodhi rarely gets a PRN because he comes out of these “tantrums” as quickly as he went in and there is no remnant that they ever happened except for the imprints of his own teeth on his skin.

 

Yet they are so confused.

 

If you replace the self-injurious behavior with aggression toward others, you have Jani. Bodhi’s self harm is lessened by Seroquel, an anti-psychotic that also worked to some extent with Jani from her first hospitalization at BHC Alhambra in March 2008 to December 2008, when she became acutely psychotic again and tried to jump out of her second story bedroom window. Head first. Like she could fly.

 

Have you ever read Oliver Sacks’ book Awakenings? No, neither have I, although I’ve seen the Robin Williams movie that it is based on. In fact, it was on TV tonight while I was trying to fall asleep in my home with one child missing. I never forgot it the first time I saw it. L-Dopa brought those men and women back to life. But then it stopped working. Catatonic behaviors returned, no matter how much the dose was increased. Anti-psychotics can do the same thing, work for a while and then stop working. Symptoms return and even to this day, doctors still keep increasing the dose in vain, hoping to slow the return of the symptoms. And then you are left changing your son’s diaper and kissing his head and telling him you love him and praying to God that passes for some semblance of a human life.

 

By the way, anti-psychotics also work on dopamine receptors, although what that has to do with psychotic behavior no one could tell you.

 

I write sentences like that to try and get away from the pain. What I wrote in the last sentence of the previous paragraph is the true crux of the issue. As a parent of a child with any sort of disability, what eats away at you is the guilt of not knowing whether you are doing enough to offset what the disability takes away. In essence, you want to feel, I want to feel, like Bodhi has some moments of happiness. I want him to feel like there are enough good moments in life that make up for the hell of the rest of it. Bodhi has no suicidal ideation, unlike Jani at that age. Which, by the way, is why I agreed to have Bodhi. Long before there was violence, there was depression. Yes, Jani was starting to act out in public but she wasn’t violent yet. What she seemed was depressed. Try as I might, nothing seemed to wake her up at life. She enjoyed nothing. I don’t know if I can describe what that feels like to see your five year old depressed. You shouldn’t feel like life has nothing left to offer at five years old. I gave her a sibling because it was the only thing that excited her. I did it out of a desperate hope that having a newborn sibling would give her a reason for living.

 

I am aware that that sounds fucked up now. Maybe you’ve never done anything fucked up for the happiness of your child. I don’t know. All I know is I have.

 

And I don’t regret it, because I love Bodhi and so does Jani. Now. Now she can be a big sister to him. But that lack of regret is still largely based on my selfish feelings of love for my son. Is he happy? Is he happy being alive? That’s what I want to know and that is what he can’t tell me.

 

If my children are not happy, and I don’t mean in the moment to moment but happy to be alive, that is the only thing I cannot deal with. It is the only failure that matters and their happiness, their desire to live, is the only success I care about. It’s the only thing I will ever care about. It is why I do everything I do, including the Jani Foundation. I am trying to create enough happy moments to keep pace with the moments of hell that their brains force upon them. Because I want them to keep fighting. Because I can’t ever free them from what they have. As long as they want to live, that is all that matters.

 

While I was holding Bodhi tonight, rocking him, trying to get him to sleep so I could go home only to come back and do it all over again tomorrow night, I tried to cry. I desperately want to cry. I can feel it but it just won’t come. I sob, but they are dry. It reaches the edge and then dies away, like the memories I have lost.

 

I know it is a defense mechanism. I want to feel the agony of loss and regret and fear of the future but I can’t because I still have to get Jani and Bodhi to that future. This is what it means, I guess, to advocate for your children. You have to suppress the natural emotions that come with seeing your child in this state so you can argue with the doctors or the school district for what you know they need. You can’t be an emotional wreck. You have to be a fighter because your child isn’t their child. They are never going to fight like you will. They will give up. You won’t.

 

But I think what bothers me the most, and what I am realizing as I go through this process again, is that it isn’t just the negative emotions that get suppressed. Love gets pushed down there as well, along with the pain and fear. I suppose this is because love causes pain and fear. The root emotion gets pushed down and I become automatic.

 

I don’t want to be automatic. I want to feel that pain because I want to feel that love, even if it rips me apart for a little while. Should I ever lose either of my children, I want to know that I loved them with every ounce of my being.

 

And I can’t do that without feeling the pain.

embedded by Embedded Video

YouTube Direkt

20 comments on “Automatic for the People

  1. You have a wonderful blog. When I read it I see a parent who pours his heart out. It’s good for all the parents who feel silent. I have two kids with autism. And my oldest is a little like Bodhi. She turns on a dime and becomes violent. She’s on rispriadone but it’s effect is waining. Although she is mainstreamed into 1st grade, which is no small victory, I worry everyday that she’ll slip back into the hostile rage we just got her out of. I think you speak for a lot of parents. Especially when they can’t speak for themselves. Thanks 🙂

  2. Merry Christmas, Michael. I too have seen the film, Awakenings, it was so sad, however, I had an epiphany, I realized that this is the rest of my life; that is, my mental illness changed the course of my life so that I can devote my whole life towards helping people who also suffer on a day to day basis. I am reminded of the scene where De Niro is saying, “I have been fighting this for years, what do you know, what do you know about how I deal with this. You know nothing….” That scene still haunts me because I watched it during my healthy days and I didn’t know that I would have to face regressive autism and severe ocd then. I wonder what my life would be like if… However I am glad that I am fighting like Leonard, in a different way, because if accepted to UCLA, my life is gone, safety zone, and replaced with a life-long dedication towards helping people like jani, bodhi, and Leonard types. I think that’s more noble than living a life without this pain of knowing you will fight this for the rest of your life, “why me” is replaced by “why them”. Suffering can be transcended into a life long dedication of love towards people who suffer and need help– I will be there in that battle to help ease it for families and patients.

  3. I know that feeling of numbness. And I realized that this Christmas I am only happy that my daughter is happy right now. I don’t feel like I have any feelings of my own anymore. Funny thing is, I don’t even care about this anymore. At my house you have to be prepared for anything, every day. So I am trying to learn how to live in the moment more, to keep myself from going crazy, worrying about my daughters future and all the things she will never be able to do, worry how long this latest med combination will work before the psychosis overwhelms the drugs again, and on and on. But today is a peaceful day for us, and I am going to enjoy for all its worth because Tomorrow could be back to the drawing board, full of fear and pain againZZZZf

  4. I am no stranger to the numbness. I realized about a month or so that I seem to have no emotions of my own anymore. As my daughter goes, so do I. When shes down we are all down-with the pressure and pain of keeping her in touch with this world and keeping her wanting to live and keep fighting this horrible disease. And when she’s feeling good we are all feeling good, because the pressure has eased enough for us to take a breath and do some “normal” things as a family. It doesn’t matter to me anymore though, I am learning , as you said at the end of your book, to take each day as it comes – to survive the bad ones with us both intact, hopefully with her out of the hospital, and to savor the good moments as they come. Being numb is ok if helps you to survive and love your kids, and do what you need to do for your kids – how else are we supposed to survive the unique and special hell of raising our kids while trying to keep the beast at bay.

  5. Michael,
    Merry Christmas to you and your family! Sometimes I think we are our own worst critics. My wish for you and your wife this year is that you can find moments of peace for yourselves. You are NOT bad parents! If supporting, advocating and loving your children, which means making difficult decisions, you are doing the best job you can do for both of your children, you are doing it!. I have taught in the low incidence program and emotional/behavioral, autistic rooms in our school district for a while and I see so many parents that I just want to shake and wake up and say hey, this is your child…he/she has gifts and talents you don’t know about! The children also have so many needs their parents don’t know about. You see these needs when you go to see Bodhi and spend time with Jani. As a parent, you are the BEST advocate for your children! You may not be right 100% of the time, but don’t be so harsh on yourself! You are doing what you know how to do and what comes from the heart! It may sound like I’m not doing anything much here, but I will keep you and your family in prayer. You and your wife are on duty 24/7 7 days per week and that is more than intense. PLEASE take of you and your wife so that Jani and Bodhi have a family to be with :).

    Wishing you Christmas peace and blessings

  6. Hi Michael and his family,
    I just wanted to say, Merry Christmas and Happy Holidays- I believe that through pain light will shine, breaking the darkness. I will continue to pray for your family, and I hope that everything will be okay! I will keep your family in my thoughts and I just wanted to say that Jani and Bodhi are very beautiful, and they are very amazing and brave, and I believe that they can do anything that they dream of. As a student, I was told very negative things of my performance in school, but I believe that each one of us have great potential in our hearts, which shines like stars. Keep swimming through the rough sea and stay strong. Lots of prayers and love from Calgary. 🙂

  7. I don’t know if you’re aware of it but it’s possible to stop periods for special needs kids who may not be able to handle it. It’s pretty common with autistic girls. It’s just a shot given every few months and it’s not harmful. There is no reason for parents and the girl to deal with the stress if it’s not needed. Jani’s pediatrician should be able to help you with it if it comes down to it.

  8. “You shouldn’t feel like life has nothing left to offer at five years old. I gave her a sibling because it was the only thing that excited her. I did it out of a desperate hope that having a newborn sibling would give her a reason for living. I am aware that that sounds fucked up now. Maybe you’ve never done anything fucked up for the happiness of your child.” oh dear..youre making me cry. No. No that is not fucked up at all. and if bohdi was completely healthy, you know you wouldnt feel that way.

  9. Yes, Pain and love cannot be seperated. They are two sides of the same coin. After spending months reading about Jani and gaining my first understanding of those who suffer mental illness, a friend of mine’s daughter has just been hospitalised for a severe illness a few weeks ago. She is still in hospital, but is slowly recovering from NMDA encephalitis. The next book on my reading list is going to be which is written by a survivor of the condition, which can induce severe psychiatric conditions such as Schizophrenia. Apparently until recently the main problem is that sufferers have been sent to psych-wards, instead of hospitals, until recent awareness by the medical community. The body’s immune system basically gets tricked and attacks the brain. Thought all those who follow this blog might be interested.

    Mental problems really highlight just how fragile the human body is. When I was little I had a very high fever for a few days, 100+ Fahrenheit (104F if the thermometer was right I seem to recall). I will never forget the terrifying hallucinations I had. Recently I looked up fever online and was shocked to see how even a small increase in body temperature can result in major problems – brain damage etc.. I had no idea then how dangerous fevers can be.

    Yes the human body is a very fragile and complex machine…. We abuse it daily, without a second thought to the millions of chemical and brain related processes going on within us, all of the time. Your family is always in my prayers Michael and Susan.

  10. Sorry Michael, seems the book title got deleted.
    Brain on Fire: My Month of Madness
    Thought you might be interested as it is Schizophrenia related.

  11. Im trying to get a hold of tge parents i just saw the document on tlc . Did you ever look into like a religious explination? I dont want you to get offended or anything but i think you need to seek out a Catholic priest. I seriously think your child is possesed. Im sorry, but it wouldnt hurt for you to go to a church and talk to a priest. Your child has characteristics of a possesed person.

    1. hahahahaha, posessed? what are we, the 1800s? drs have proof of what is wrong with her, scientific, medical proof.

      1. Why can’t both be true. Hell I’ll try anything for my little girl. What harm in going through a priest blessing. I’d do it. Of course I don’t know what it entails. Maybe the ritual itself is traumatic?

        1. It can be traumatic. People have died from non scientific “treatments” for mental illness. Nothing should be done that is not under the care of a physician. Also, when trying to establish mental illness as being as severe as cancer, explorations of radical unscientific “cures” is not helpful.

  12. Hello Michael,
    You do everything you can do for both of your children.

    While reading “January first”, I noticed that most of what Jani learnt pre-five years old related to maths and sciences.
    So, what you say about her struggles in reading does make sense, at least to me.

    I still have faith that all what she learnt pre-five is still there. But Jani cannot use it because she is impaired by her struggles in reading.

    Such a difference between her abilities in maths and reading does not question her IQ 146.
    I am by no mean a doctor, but someone diagnosed with ADHD, LDs, Sensory Processing Disorder and hearing loss caused by brain damage.

    Also, high IQ does not always translate in high academic abilities. You may already know it, but I’ll repeat that it’s obvious that Jani is a very intelligent girl. Even if she does not fold into the school mold.

    Have you checked for learning disabilities ? More often than not, they go hand in hand with mental illness/neurological disorders.
    It can help you to know how to help her progress in reading.

    I know that Jani is followed at UCLA, but such a difference between her maths abilities and her reading abilities, while her IQ 146, makes me strongly think of an underlying learning disability.
    More often than not, LDs go hand in hand with mental illness/neurological disorders.

    If she does not have LDs, that’s good.
    But if she does have LDs, it points out to the direction on how to help her with reading.

    Take care

  13. dear michel,

    i ve been following your blog for a little while. from germany. discovered it on one sleeplees night last year when i was worried about my little brother who had a very acute phase of schizophrenia at that time. actually he is not that little anymore but like your jani with a very high iq. we grew up without our mother who died of cancer when we were very young. i fought cancer a few years back, too. both illnesses run in our family… so i sometimes wonder if i ever should have children. and put them at risk of going trough what we had to go trough/ are going trough. strangely it never occurred to me to think about if our parents made the right choice. because despite of all the s** I’m quite happy to be alive and to have my little brother….

    why im writing? i just saw your halloween video and it made my incredibly happy to see the fun you four were having. keep up that spirit and continue to be the awesome little family you are. lots of love from oversees

  14. Hello,

    I came across your blog through one of the usual routes, and was curious about whether EST has ever been considered as a treatment for Bodhi? I would be the first to admit that I have limited knowledge around the subject, however I believe the treatment suffers from an unfounded negative reputation and I have read that it can bring many cognitive benefits, including the reduction of self harming behaviour, .

    Best wishes to you and your family.

    1. Do you mean ECT, ectroconvulsive therapy? No, it has not been considered, either by us or by his doctors. Generally, ECT is reserved for severe depression that has proven unresponsive to medication. That is what it seems to be the most effective against. It is also not used on children.