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.
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.
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.
- 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.
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- 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
- 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