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Safe and Sound (All Made With Lead)

I am writing this now because whenever I get back from where I am going, I don’t know that I will be able to.

 

There are a long line of things that when I was a younger man, I never thought would happen or never thought I would do. I had a very strong idea about who I was when I was ages 18-28. I swore I would never be a man who would shake his child, like I did once to Jani when she was just an infant. I’m not going to bother with the extenuating circumstances. I never thought I would be the man who would spank his child in anger, like I did to Jani when she was constantly violent and I was at the end my rope. Sorry. Extenuating circumstance. I can’t justify that. I never thought I would be the man who hit his wife in the heat of stress and anger. I despised those men and I became one of them. I did get help. Medication and therapy. Extenuating circumstances again, I know. This is not the first time I have admitted publicly to this but it is still hard.

 

I never thought my first child would go into a psychiatric facility. I never thought I would be accused (and later cleared) of sexual abuse. I never thought my daughter would be diagnosed with child onset schizophrenia. I never thought there would be anything wrong with Bodhi. I never thought he would have autism. I never thought I would have to hospitalize him. I never thought I would have to put my children on drugs that scare the shit out of me just to keep them safe.

 

Today, another event has come that I never thought I would agree to or would happen.

 

Bodhi is in the UCLA ER in four point restraints.

Photo: Bodhi

 

I never believed in restraints of the non-human kind. I have always believed it was better for me to get hurt, to take whatever physical pain I had to, that tie either of my children down.

 

But it has been taken out of my hands now.

 

Just like with Jani, it was Susan who had the courage to do what I could not do.

 

If you couldn’t guess from the last blog, “Turn and Burn,” UCLA released Bodhi last week. Sure, he was doing great on 10mg per day of Abilify in the hospital unit, no PRNs. But the hospital unit is not the real world. Kids generally do better there because all the stressors of life are gone. It is insulated. We were willing to take him home but we wanted to make sure he could function off the unit. We wanted them to try to take him to school there (UCLA has it’s own school, just outside the unit) as well as even just onto the “deck,” an area outside on the fourth floor that is protected by ten foot bars. The reason we wanted this is that Bodhi was terrified of the deck (and no, you can’t see the drop unless you go the very edge). He never made it past the door of an area the roughly the size of a basketball court. Jani always loved it out there, playing catch with the other kids. But Bodhi was terrified and if he was going to come home, if the Abilify really worked like they swear it does for him, he should have been able to go. School was not in session when he was discharged. They told us he did go to the deck. So we took him home.

 

But based on what has happened since, I am pretty sure they got him to the deck and that was it. Straight back inside. For the month he was there, they couldn’t even get him to go to the door. This time, I think they got him to go to the door and decided that was enough “proof” that he could function in the real world and they let him go.

 

Not that I blame them. Blue Shield is breathing down their necks, wanting a release, and there are only six beds for kids. There just isn’t enough inpatient beds in full medical facilities.

 

Bodhi was exactly the same at home. He cannot function. He cannot function because the entire world terrifies him. Every moment of the day he is fighting this internal battle between wanting to go out and wanting to stay home. When he is home, he wants to go out. When he is out, he wants to go home. “Want” doesn’t quite describe it. He bites himself and thrashes around. He drops to his knees (which are badly bruised) and his back.

 

We had another IEP to set up “home hospital school” where he would go for 30 minutes with a teacher after school. He couldn’t even do five minutes. Even with me, Susan, Jani, the teacher (who was Jani’s ED teacher when she was younger), and three aides. The teacher wasn’t pushing him. She was getting out shapes, which he loves. But he was too terrified to do even that. He wants to be held by either Susan or myself 24 hours a day.

 

Our regular psychiatrist has been out of town for two weeks on vacation. Susan took Bodhi back to UCLA yesterday. He got THREE IM (intramuscular) injections of thorazine by the ER staff. But they couldn’t admit him.

 

No beds were available.

 

Our options were to either have him transported to another facility (which we refuse-thanks to Jani we know what the other “facilities” are like) or take him home. His heart rate is at 173 bpm at rest, which the ER doctor dismissed as being due to the thorazine and Benadryl.

 

Yes, we had the option that most parents of mentally ill kids and adult mentally ill face: stay in the ER until a bed opens up. The ER, along with prisons, is American’s other holding tank for the mentally ill. But I didn’t want to put Bodhi through any more stress. He had been through enough. I hoped he could come home and figured he would be knocked out from all the drugs he was given.

 

No. He kept amping up at home, constantly throwing himself around and throwing objects. Dr. DeAntonio insisted that the Abilify needs time to work. It’s been three weeks but okay. We gave it to him.

 

Abilify does not calm him down. It makes him happy… for a while. Then he goes back into the self harm. Around ten last night, he bit his thumb and tore the flesh. I will post a picture.

Photo: He bit his hand again! The ABILIFY is NOT working!!!!!!!

 

He also bit his thigh, drawing blood. We used PRNS of Thorazine, Benadryl, melatonin. Nothing worked. I have never seen anyone, let alone a child, resist this level of medication. I had to hold his arms while Susan held his head. He kept twisting like he does and I let go because if I don’t his arms will be pulled from their sockets. He doesn’t feel any pain in this state. Nothing.

 

Susan took him back to UCLA this morning. As of right now, he is still in the ER, in restraints, while the ER doctor fights with the psych team to get him admitted. The ER doctor actually physically went to see the psych team and said they rolled their eyes at him. He got angry, telling them how severe this situation is. Bodhi’s BPM remains high and now his blood pressure is falling. Not dangerous yet but much lower. He is on an IV drip of thorazine/Benadryl.

 

We will remain in the ER until he is admitted.  If a bed does not come available today, the next potential is Monday, unless UCLA considers Columbus Day a holiday. Maybe Tuesday.  Yesterday, there were eight kids in the ER with psych issues and it was either take another hospital or leave. As soon as I am done with this, I am going to UCLA to relieve Susan. I am prepared to stay overnight until Susan comes back the next afternoon to relieve me. And we will go on like that until they admit him.

 

The selfish part of me, the scared part of me, hopes those other parents agreed to transport to other facilities, even though in my normal state I would never recommend any psych unit in Southern California other than UCLA. But the other part of me knows what happens to kids in places like BHC Alhambra and Del Amo. They are hell-hole holding tanks with overworked and underpaid staff. You will have no idea what is happening to your child. If you ask questions or get upset at the lack of care, they just ban you from the unit. UCLA at least involves you and would never ban a parent from the unit.

 

And then there is the darkest part of me. The part that is afraid that Bodhi will die. The part of me that was there the day at the end of January First that I speeded home and overdosed on my anti-depressants, Jani with me, is back. The part that wants out. The part that wants to die because I am not strong enough.

 

I won’t, of course. My fucking sense of responsibility will not let me abandon these children. I brought them into the world. I have to keep fighting for them.

 

I fight against that darkness, amplified by a friend’s recent loss of his boy, Henry, for the same self-injurious behavior (he smashed his head open on concrete and was declared brain dead), by reminding myself how far Jani has come. Jani can do almost anything now. Two days ago, she was in the class with Bodhi, trying to help him, trying to reassure him. In the book, I express my fear that she would never be able to be a big sister to him. I have never been happier to be wrong in my life.

 

Jani, and so many other kids who fight their own minds every day, they are the ones who give me the strength. Briana, Brian, Jessica, Katelin, Andrew, Alysha, Mary (sweet Mary, who has been victimized like no other but still fights on), Kastle. Jacob, Jason, Chris, Nigel, and Adam, just to name a few. It is you children, and the children of the SDC 5 program, who have taught me what it means to persevere when your own mind betrays you and the world doesn’t get it. The world thinks you are bad kids but I know better. I know who you really are. I have talked you to all about Rush and Pink Floyd, taking care of reptiles, space, rockets, airplanes, the stock market (thanks, Jason!) Pokemon, Minecraft, California. You are the best fucking kids in the world and don’t you ever let anyone tell you different.

 

And I have to do this for Will and Harry. I cannot let their deaths be in vain. These boys gave their lives so we, us, society, could learn. We need to heed the lesson that childhood mental ill and autism can kill.

 

So now I have to go face my baby boy in restraints.

 

I am going to leave you with a few songs that are Bodhi’s favorites.

 

  1. Capital Cities “Safe and Sound.”  Bodhi loves it when I lift him above my head during the lyric, “I can lift you up…” Thank you, Ryan and Sebu. I think I love this song also because it’s all I want.
    embedded by Embedded Video

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  2. Phoenix “1901.”  Bodhi likes to be held during this song do and laughs when I tip him back upside down during the “Fallin,’ fallin,’ fallin,’” chorus. Thank you, Thomas, Deck, Christian, and Laurent.embedded by Embedded Video

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  3. Matt & Kim “Let’s Go.” For some reason, this is a very calming song for Bodhi. Thank you, Matt and Kim.embedded by Embedded Video

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31 comments on “Safe and Sound (All Made With Lead)

  1. Michael, I cannot believe that bodhi is exactly like me. Why didn’t the doctors diagnose him as severe ocd along with his autism is beyond me. Michael, please try luvox Cr that’s specifically for pediatric ocd–only med that is. I want to help, love you guys dearly, I know what is going on it happened to me like bodhi sans restraints. Don’t give up, I won’t, please try that med it won’t hurt to ask de antio about it. Great to see you and the progress you made, my dad couldn’t handle stress well due to my illness–however, he changed like you. You have a great wife, she gives you strength you thought you never had, and you are good hearted as well. Keep on fighting the good fight my friends.:)

  2. I have been on a long time watch of the progress of Jani and Bodhi, and I have to say, you are an extremely strong person for going through this, you and your wife both. Please don’t stop doing what you do, you are honest and pure and amazing and you and your children have both made a difference in many lives including my own. Please keep going.

  3. I know words will never ever be enough. I know this too because my son suffers. We live up in Canada and have been struggling with our son since he was 2. Well actually long before that. He’s a twin (sister Trinity). Gabriel was super small at birth, many complications…he suffers and will continue to suffer. We as parents are their advocates. From reading your blogs YOU give me strength. Thank you

  4. My young son was diagnosed with depression, and it tares me apart to see him just unhappy with himself. I can only imagine how horrible this must be to endure for you, your wife, and your children. No, that’s not true, because I really can’t, I can’t even imagine having to bare the trauma of watching my child rip a hole in his own flesh with his teeth. I want to ask you to please keep being strong and to keep fighting your darkness, but it seems so rediculous to say. These are the situations that really screw with my faith. Why, if there is a god out there, would he allow this to happen to an innocent child? It makes me angry for you, I can only guess at the level of anger you must carry around everyday. I just want you to know that we are forever sending positive energy your way, no matter how ineffective that may be.

  5. Michael,
    Your blog just clarifies how screwed up our mental health system is. I’ve been in and out of behavioral hospitals since 13–10 years now. How I managed to keep fighting and stay out of them for the last four years–since my grandma passed away. I have written you before and have asked about Bodhi (but I don’t expect you to remember, you have so many faithful readers). I am not sure if telling you that I am currently struggling will be comforting to you. I tell you because I am seeing a new therapist on Monday (the forms to fill out were like 20 pages but I consider that a good sign). I’ve found the more they ask about you Before you ever see the therapist’s face is good. Call me crazy but I have hope I will get something out of this person. You say you keep fighting because of Jani and Bodhi, I do the same but the fight is for my family and pets (the dogs in particular). If I didn’t have them, I believe I would have given in along time ago.

  6. My heart is heavy for you. New York State has the same issues. You go to the ER, sit for 24 or more hours to be sent home with your child on Benedryl. There are no other choices here….its that or jail. Very sad.

  7. I work at a facility in Wisconsin that has children with ASD (and other disorders) who have behavioral challenges. We have kids on meds that should put them in a coma, yet they run around like they got a whole bowl of candy!

    Stay strong!

  8. I will be praying for you, your wife and your precious children. Have you tried reaching out to other mental health organizations like Bringchange2mind.org. My heart goes out to you…because I have a daughter who was diagnosed with general anxiety disorder, panic attacks and OCD. I know how stressful it can be as a parent with a child with a mental disorder. No one understands unless you’ve been through it. On top of it all, her dad just died of Stage IV Melanoma. He was her best friend. There are not a lot of care options for children and adults with mental illness…but we’ve all got to work to change that. We all need to demand change. God Bless you and Keep you and give you strength….
    Jess Morse

  9. wow, I don’t even know what else to say. my heart is with you all tonight, so incredibly sad, please know there are a lot of us out here who care and care deeply.

  10. Wow, Michael. Beautifully spoken as always. I can feel your pain and it hurts. I see you and Susan fighting for your babies with every breath in your bodies. We will will this fight, I promise you!

  11. Michael, I have been following your family’s story since I learned of you. It was when I was passing through a website a few years back. I’ll admit I’m a total bookwork, always have been, and when I saw the story I felt something strange, because even though I, myself, am not mentally ill, my little sister is and I’ve been taking care of her since our parents died (my aunt has custody, but I take care of her – she doesn’t know how to. Our parents, they died in a car accident when I was 16 and she was, about three years ago). Anyways, I was reading the story and saw the name of Jani’s world, and it felt creepily familiar to me. I’d heard the name before. It took me a while but I finally remembered where. It’s the name of a song. I’m not sure if you’re aware of this or not, but the artificial celebrity “robot” singers called Vocaloids had a song written specifically for her and to inform people of her struggles, and that’s where I’d heard it, as they are my favourite musicians, it struck me as odd I didn’t immediately remember where I heard the word “Calalini” before. Anyways, I just wanted you to know that even all the way across the pond in Ontario, Canada, people have heard your voices. It gave me hope that I can get help for Mira (my baby sis). I mean, Canada’s health care is “great”, unlike in the US, if you’re seriously injured you can bleed out in a hospital ER without charge….. that was sarcasm, since I can’t figure out how to use the italics here. I’ve tried to message you before, unfortunately I couldn’t figure out how to make an account here – if it was possible. Hopefully if this works, I can leave you comments on your other posts I’ve read but never gotten to talk to you about – you’ll find that I’m a very jaded and cynical girl for my age. Oh well, I’m running out of time, my laptop’s dying. I just wanted to make sure you guys knew reading your blog has given me some sense of peace inside.

    – Kisara

  12. Thoughts and prayers are with you all. Glad Jani is doing so well and hope it continues with few set backs. Also, hoping the doctors can find the right mix of what Bodhi needs to move forward in life sooner than later.

  13. poor baby it seem like your soon having severe angizty along with autism i have this to are there any good autism school in ca were you live he can go to .i on meds it took along time to get the right ones .im having a hard time myself right now it life on asd .but some therhiys i had has help alot like sencorey therhy an stuff .have you try having him were sun glass an headphone when he gose out that block out extra sencory wotld stuff i use those things /also social storey book might help him for his daliy rution .i dont no how verbl he is but as my language got better my angizy got some what better till puburty hit then it was helkl all over agin .hope he can get some happy days soon

  14. Hello Mr. Schofield! You and your family are so inspirational! I’m praying for you. Thank you for all you do! I have letters that my class and I wrote for you and your children. I was wondering if there was an address that I could send the letters to. If you want to, you can send the information to my email instead of posting it here. Or you can decline to tell me at all – that’s also perfectly fine! Thank you for all you are! Never lose hope 🙂

    1. That is very kind of them. They can be mailed to our office address at Jani Foundation, 24270 Turnberry Lane, Suite 200, Valencia, CA 91355.

      1. Hi , there are very simple treatments and doesn’t cost much which can heal at least 30 % of autism and some cases it cures it 100 % depending on each case. It is 100 % natural with no side effects. It is much more better than chemical medicines which can harm children in the long term. It was tried for many kids and proved to have very good results. I can cooperate fully to help anyone without paying money. All what is needed is cooperation and patience from parents.

  15. Hi , I have by chance watched the video of Jani . I know a treatment for her and for her little brother. If her father can contact me please ask him to do so.

  16. The way Your being treated is disgusting but I also know You and Susan are the bravest most hard working parents trying to do right for Your kids, I’m so happy to hear Jani is doing so much better now I just hope that Bodhi gets the help and treatments he sorely needs and I pray for You all that soon everything will work out and happy days will be Yours for the taking.

  17. Hi Michael. I hope Bodhi is doing better (and things are easier for the rest of the family, too). As always, you and Susan have my greatest respect. My son has commented that he has never known of a person that’s closer to a saint than you, and we are not religious.

    My family and I have sent you a couple of emails to mschofield@janifoundation.org, to which you had referred me in a Reddit response. It’s been a few weeks and we haven’t heard anything, so I wondered if it’s just that you’re so busy (which we understand – no pressure to respond), or if maybe you hadn’t gotten the emails. Please let me know.

    Thank you again for everything you are doing.

    1. Yes, I got them. Thank you. Due to the sheer volume, I can only respond to emails requesting help. But I appreciate you writing.

  18. Your story has reached New Zealand when you were featured on Oprah I would think of your struggle from time to time and then you were featured on Dr Phil. I was hoping that Dr Phil would be able to help you but he gave no indication from the episode that was featured here. It was only today 23 October 2013 that I decided to google you to find out what ever happened to ….. due to my own mental health issues I too have found the public health system incredibly frustrating. My deepest best wishes and prayers are extended to your family. Never give up its because of families like yours that law changes are made for the better.
    with kind regards

  19. I hope by now Bodhi is inpatient and doing better. I have been following your blog for a while. I empathize, I know how hard it is -I think I cried the entire time my daughter had to be in 4 points with a sitter and myself holding her hands to keep her n ourselves safe- I resisted and refused any physical restraints on her until the day last August when my psychotic (she has a combo of severe PTSD and schizophrenia since age 8) 13 yr old very nearly succeeded in her 7th suicide attempt. Once she finally came out of the coma, she fought like a wild animal and would re-injured herself if she could have. it took about 6 large adults to keep her from harming herself, and the ER staff. (Yes we were still in the ER-for 2 days-no peds ICU beds). Once I shook off the numbness and shock of how close i came to losing her forever (I will never not feel that fear I felt waiting for the ambulance and trying to keep her breathing), I finally realized they couldn’t possibly make her worse, but they might help us keep her safe from herself, until she could get calmed down by the haldol. I felt horrible, but the restraints did keep her safer, and that’s what I reminded myself. Please put aside any guilt. Sometimes holding on in this one moment is all you can do, so hold on. If we don’t keep them safe, who will?

  20. My heart just aches for the children that suffer from these issues. I have a 16 year old daughter who at this moment is telling me the voices are commanding her to kill herself. we are waiting for the paramedics. The long hours waiting for beds is brutal. Something has to be done in this country to help us with our children. Insurance is dictating what she “NEEDS”…unbelievable. I am doing an appeal for residential treatment for her and hopefully she will be accepted and kept long enough to stablilize her. So far shes only been able to stay home one week at a time.
    Prayers for everyone!

    1. Dear Ang,

      We have wonderful private online support group for parents of mentally ill children of any age, going through exactly what you are. If you are interested, please email me at mschofield@janifoundation.org. We also might be able to find another family local to where you are.

  21. I have been following your family for a while and am extremely moved by your spirit and how the family has worked together to overcome such tremendous issues. I understand why you have responded with anger towards your family and hope you can forgive yourself. I hope your family finds peace and I hope you and Susan catch a break in all of this madness. Thanks for sharing your life with us. I’m a clinical psych masters student and hope to make a difference, even a small one, in our tremendously broken system.

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