A Year Later

I am reminded of the value of keeping track. Even though I do not want to I believe this will have value later. Our son has spent four days in the ICU, three days on 5150 hold, and is now on a two-week 5250 hold. That ends tomorrow and the clinicians would like him to continue treatment. I had called him the day after his admission to acute care and I had told him and his case worker I wanted to be present for the 5250 conversation, just to bear witness. He did not seem to remember that I had been at his first 5250 meeting, last year. It feels important to have someone who cares for you present at such a moment, when you are vulnerable, when important decisions are being made about your care, when you could be committed to a course of interventions that may feel very intrusive. I told him he could call me if he had questions or wanted to talk. I went to the facility and sat for hours, waiting to be part of the conversation. I was not allowed in. He hasn't called.

Months After

Our son has been in out-patient treatment for two months. At first daily, all day, then stepping down to half a day, daily. He has been living at his mother's house, and is drug therapy compliant. The treatment center would like to continue lessening his service plan, but they do not want to release him until he has a therapeutic relationship set up with a psychiatrist. We send him and his mother a list of doctors near them and when I see them next the progress is not encouraging. They have not been able to find a doctor who will see him before August of this year. Our son asks me if I think the diagnosis is correct and I have to tell him yes. He wants to know when he can stop taking the medication and I have to tell him it could be a long time or never and that the treatment may change over time. He may have side effects that are uncomfortable and he will have to decide if the discomfort is worth risking another set of incidents like what we have experienced. I take the next day off work, take the list of doctors provided by our insurance, and make calls until I find three that will take him before August. I send him and his mother the list.

Weeks After

After our son has been in out-patient treatment for two weeks, the facility asks us in for a meeting. We believe that it will involve our son, his treatment team, and all four parents. When we arrive, our son is not in the room. We are handed sheets of paper with "helpful information" on it and a conversation begins before we can review them, led by the person most closely connected with our son's treatment. It is not at all a direct conversation, it seems to start very far back and move slowly closer, probing us all the way for reaction. It feels like we are being tested for our levels of awareness, ability to understand, and willingness to help. At several times during the conversation, I hear phrases that are new to me, so I write them down. My notes say: internal preoccupation; jumbled thoughts; blunted or constricted affect; spontaneous relating; functionality and peace of mind. When our son is finally brought into the room, well over an hour has passed and he does not meet our eyes, barely greets us and the remaining conversation is strained and unsatisfying. After I get home, I read the papers, see the diagnosis, and feel enraged that they did not simply tell us the words to our faces.

Days After

In the days after our son begins his two-drug therapy, he seems to do better every day. More organized thinking, better memory. He will leave the in-patient treatment facility two weeks after he first needed medical treatment. He starts an out-patient treatment program and that's an opaque box for me. I don't know what his daily treatment or regimen is until all the parents are asked to have a meeting with our son and the people who have been treating him. I'm both excited and scared for the conversation, but I'll leave that for more later.

Day 7: March 25

The doctor is recommending an additional drug therapy and our son asks me if I think he should agree to it. I say yes, as where he is seems like a good place to safely try all avenues for the best outcome. There is more to our conversation for the day, but this seems like the most important item.

Day 6: March 24

I am trying to keep up a pattern in our daily talks: ask him about the medication; ask him about something interesting in his day; remind him that his father will visit when he comes back; then circle back to something we talked about the prior day. I tell our son I had tried to find a commercial for mind drones and had not found one. he says it sounds like he completely hallucinated that and he seems surprised and worried. He tells me he is disappointed because his doctor does not know about the bi-camaral mind. When I call the doctor a psychiatrist, he seems upset. I ask him if he has had a chance to draw or write in books I brought he says the desk lost the box of pencils, so, no. He tells me he thought when people would invite him to eat with them they wanted to consume him. I ask him to clarify, if it's cannibalism or a spiritual consumption, and he says it's more like spiritual. That's all the time we have.

Day 5: March 23

I bring our son a notebook, colored pencils, zen coloring books and encourage him to keep a journal or make drawings to try to chart his thoughts and bring them to order. I ask him how the medication is making him feel and he just says "gassy". I remind him that I will come every day to see how he is feeling and if he is feeling more centered or his thoughts are getting better organized. He tells me another patient had a seizure right in front of him. He thinks he caused it because of some kind of negative symbiosis or synergy between the two of them. He asks me again if I know that autism was once called childhood schizophrenia. I tell him that autism was briefly called childhood egocentricism. That gets little response. He tells me that when he was about 10 years old a close friend caused him great damage by calling him a child molester. Another kid had said it was not possible for a kid to be a child molester, but he said it not to defend our son but merely to be disputative. And then our time is up.