My dad's been sending me a lot of emails lately, updating me on how my brother's doing. Caleb's on so much medication, it's ridiculous. That's why he's going to a state school in Austin for a few weeks; it's sort of like rehab. I hope this little story can serve as a warning to parents of autistic kids to resist medication as much as possible. We tried to, but we also trusted doctors a little too much, in my opinion at least.
Caleb Update
By Cliff Jones, Sr.
I met Caleb Wednesday morning at Brenham and he was packed and ready to go to the state hospital. Brenham insisted that they drive him, so I followed in my truck, right behind. Three staff went: the psychologist and two guys.
A couple blocks down the street, Caleb turned around and saw me following and smiled real big. We stopped halfway there for a break at Whataburger.
When we arrived at the Austin State Hospital, the admissions building was downright scary. There was a barred gate and fence with security locks, as if we were checking into a prison. The intake room was also security locked with plexiglass windows and three bureaucratic women sitting behind the windows. One woman asked where the commitment papers were.
Let me back up. Caleb's psychiatrist had suggested the hospital after a year of trying to reduce his meds at Brenham, which only resulted in behavior problems and self-injury, and ER visits and stitches and staples. She said Austin was set up for this kind of problem and we could reduce him off his meds much more quickly and safely. I was hesitant about it, but agreed. The psychiatrist also gave me the understanding that no judge would need to be involved because they had an arrangement with the hospital that if Caleb stayed less than 30 days, it would not be necessary.
So we get there and the intake people had no idea what we were talking about and insisted on a judge's commitment papers. Everyone got on their phones and started calling all around. The doctor sounded like she was trying to get the commitment done quickly. I stepped up to the window and asked if there was such a thing as a 30-day stay without court papers and she said absolutely not.
I was ready to leave with Caleb right then. Finally, the admissions administrator came out and apologized profusely and explained it again as Caleb's psychiatrist had at Brenham and that their admissions staff were mistaken. At this point, I wasn't going to trust these strangers with my son, and I asked if there was anything written describing all of this because up to that point, everything had been done strictly on the basis of conversations. She went back to her office and had a hard time finding anything. After a long while, she brought out several printed items from state law that described this situation, so I was thinking about this and what to do when the bureaucrat from the intake desk came out and informed the Brenham staff that they could leave, and insinuated that I could leave as well. Brenham people were starting to go when I said, "If you all leave, you are leaving Caleb with me, because I haven't decided yet whether Caleb will stay here." The doctor asked if I'd prefer that they stay, and I said it would be nice.
The bureaucrat lady then told me that Brenham had custody and had transferred that custody to Austin hospital. Basically, that I had nothing to do with it.
Meanwhile, sheriffs with mental patients in handcuffs were coming and going. It was a very rough place.
I told that lady that I was the guardian and whatever I said was the way it was, and that I could take Caleb home with me right then if I decided to. She left the room without saying anything. Five minutes later, she came back and told me that I was the guardian and whatever I said was the way it was, and that I could take Caleb home with me right then if I decided to. In other words, she had been corrected by her boss and told to come out and apologize to me.
This whole time, Caleb is right there with me, hearing all of this going on. Then the admissions administrator came out and again apologized profusely. I told her I wanted to talk with whoever would be treating Caleb and see his room, etc. She took us both back inside the hospital, where we waited and spoke with the admissions doctor. The Brenham staff left.
Eventually, Caleb's admission was complete and I was satisfied that it would be safe to leave Caleb there.
It was time to take Caleb to the Specialty Services department, which was across campus. I followed the van that carried Caleb and hospital staff. When we got to the other building, they got out and Caleb was having problems. I decided to let the staff handle it because I was supposed to go around to the other side of the building to check in as a visitor. Caleb was looking around for me as two people dragged him into the back door. This broke my heart.
It was quite a while before the social worker came to the front to talk with me. She said Caleb had needed to be put into a restraint chair as soon as he arrived.
However, I was impressed with the social worker and Caleb's new doctor. She is all for the plan of getting Caleb off of as much medication as is possible. She said Caleb's situation is not unusual because many facilities are not able to handle behaviors like his, and over the years, more and more medications are added, then they end up at her hospital, being taken off of them. She has been successful before with this.
They also have a psycho-pharmacologist who will be studying everything about Caleb's meds and also a neurologist who will be examining him and monitoring his progress.
Next morning, there was a phone message asking that if I were still in Austin, that they could use my help in managing Caleb's clinic visits that day. I spent several hours working with Caleb and helped him get his physical and EKG. First, though, I spent a really nice hour with him in the visiting room.
I was stunned when he got up and began marching around, singing the song the guards sing in The Wizard of Oz. ("Ohhh-weee-Ohhh...") I don't ever remember him singing by himself like that, his entire life. He was getting pleasure from the singing, and bouncing his hands as he marched, keeping rhythm. Caleb had never been able to keep rhythm before and I take this as one more miracle in his development. I believe new connections are being formed in his brain, thank God!
I had to hand-feed Caleb his lunch, since his hands are still in the padded gloves.
Caleb had a one-on-one staff member, but he mostly just observed how I dealt with Caleb as we went to the clinic. It took a lot of doing but I managed to get Caleb to allow them to place the electrodes on his ankles, wrists, and chest. However, we were both down on the floor and the guy running the test had to bring his stuff to us, not the other way around, haha. They thanked me a lot for my help. They were going to give up.
The physical went fine, too, and then we went outside. The staff guy was waiting and wondering why the van had not arrived back. I felt it best for Caleb to go with him instead of my truck. However, by this time Caleb was becoming agitated at the wait and I got a very painful bite on my neck. The van arrived just in the nick of time and I said goodbye to Caleb and they left. Then I started back to Magnolia. Wheww.
I called Friday and Caleb had had no more behavioral problems. The social worker said that he had been happy and singing all day!
So it was a very scary and rough start but I feel Caleb is doing great now. Thank God!
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