Worser

From moments of quiet conversation to sudden violent or near violent outbursts featuring screaming, tantrums, throwing objects and - if people are present - grabbing.  That has been the cycle of the day.  The outbursts are directed at a teaching aide (whom he no longer has) who told him (9 months ago) that all people die eventually.  Her declaration of human mortality was and is too much for him to handle.  He "hates her", he want to "hit her" and "flip her off".  He has threatened to send her "an email telling her she's stupid".  I tell him he already did all these things (although he did not) and he says, "I did?"  I assure him that he did and he calms down some until the next time.

It seems that the lower dose of Prozac that remains in his bloodstream has allowed him to reflect openly on the root cause of his distress.  That he has eaten from the Tree of Wisdom and was turned mortal.

Second Opinion, Third Opinion...

Motivated by desperation, we sought out additional opinions.  First let me just say that doctors are quite similar to building contractors or software engineers.  Show them someone else's work and they'll say, "Well, I suppose that's one way to do it...but I would do it this other way..."

We visited another psychiatrist.  That's pretty much what we got from him.  I would have used this other anti-depressant; I would have used this other anti-psychotic.  He seemed to want to emphasize the use of an anti-psychotic.  Further he suggested that the dosages used thus far were not high enough.  He suggested that we switch from Abilify to Seroquel.  The choice was driven mostly because of the sedating effect of Seroquel as my son wasn't sleeping all that well.  He suggested starting at 50mg and ramping up by 50mg every 3-5 days and reporting progress.  It all seemed reasonable seeing as the Abilify seemed to produce little except alarming muscle spasms.  So we started off on the Seroquel path.  The sedating effect was a helpful respite certainly to us and, I believe, to my son, as well.  He slept a few consecutive hours a night rather than in fits and starts.  I wasn't yet sure if there was any behavioral differences.

During the Seroquel ramp-up, we also visited a pediatric neurologist.  This was driven by a well-meaning remark by a psychologist that our son may have "brain lesions".  Certainly a frightening sounding possibility.  It turns out to mean very little and suggest nothing in terms of treatment.  The neurologist listened to our story and watched my son and mostly suggested that he could prescribe medication - like a psychiatrist.  He said any of the three tests he could perform would likely yield little useful information.  We got the same message regarding the medication as we did from the second psychiatrist -  I would have used this other anti-depressant; I would have used this other anti-psychotic.  But he also believed the dosages used thus far were not high enough.

So we kept along the Seroquel path.  Apparently, it is usual to reach a level where the sedating effect is overwhelming and that's how you know to back off.  In our case, after a couple of weeks, long before seeing our son sleep away his days, we reached a level where my son started behaving psychotically - much as he did with Risperdal.  So we backed off.  It took a few weeks to get back to where my son was not behaving psychotically.  This seems to go back to the slow metabolism where my son's system seems to extend all drugs' half-lives to the maximum.

Three anti-psychotics and three psychotic reactions.  We decided to drop anti-psychotics.  I began to wonder if this meant that my son wasn't actually psychotic.  Our first psychiatrist suggested that this might be the case.  In the meantime, we added a new collection of bottles of drugs to ever increasing cache of pysho-pharmacology.

His thesis, which I stated once before, was that my son's obsessive tendencies had been amplified by the shock and finality of death and also focused the obsession on death itself.  He thought we ought to treat this more as a problem of OCD than a psychosis.

Manifestations

One of the interesting things about my son's obsession is the manner in which it is manifested in his behavior. 

As I previously indicated, his gym teacher died of a heart attack.  My son has decided that he, too, is a candidate for this sort of cardiac incident.  He will ask anyone and everyone if they think he will have a heart attack.  The absurdity of this lies in the fact that he is about 5 foot seven and weighs just over 100 pounds.  He could be a Super Model.  Beyond that, he eats like a healthy adult in that if given the choice between a large chocolate chip cookie and a handful of strawberries, or even a tomato, he will choose the fruit every time.

In addition, because he has heard that heart attacks can be caused by stress, he has decided that he leads a stressful existence.  He believes that his stress is carried in his belly and spends much time showing people (again, all people - any people) his belly and asking "Do you think I have stress?" or "Can you make my stress go away?"  This unusual behavior leaves most people puzzled.  Adults tend to be puzzled yet understanding - peers tend to be puzzled and frightened.

Someone, at some time in his obsessive period told him that "Every one is made to die.  There's nothing you can do about it, honey.  It's been like that for billions of years."  These three phrases are often repeated without stop when he goes through psychotic episodes. (More on those later).  Otherwise the phrase comes up when he believes he is not getting answers from those to whom he is speaking or when he is feeling otherwise frustrated.

His total obsession with death has left him non-functional in ways that he formerly excelled.  He was tidy and near fastidious.  He cared about his clothing and hygiene.  He also did many chores around the house including cleaning and taking out the garbage. In fact, once a neighbor noticed that the garbage bins were out early and asked if I was home.  He told them that he did it and went on to say that he "does everything in that house." All that has fallen by wayside as he became consumed with death and dying. 

He also often aimlessly wanders out of the house without notice or warning and twice became so lost that he didn't know where he was even though he was 2 blocks from the house.  This, again, from a boy who often rode his bike up to 8 miles away on a whim and made his way back without the aid of a map.

So that's where we're at.  His world has been closed down to a tiny speck that is entirely consumed with death with no room for any other thoughts.  Interestingly, though, the death concept neither includes thoughts of suicide nor any other manner of embracing death.  Rather it is pure fear based.  He doesn't want to die...he wants to live forever. 

Of course, the contradiction of leading an awful, pitiful life consumed by death yet wanting to live forever is entirely lost on him.

Zoloft

My son had been on a low dosage of Zoloft for several years.  The intent was to help assuage feelings of anxiety and mild obsessive tendencies.  He was anxious about change, in general.  Any disruption of of his life was always upsetting. Any new experience was greeted with an immediate dislike - even if he did really enjoy it.  The Zoloft seemed to help mitigate that.  In addition, he had a habit of asking the same questions over and over again.  Even the most patient eventually came to get annoyed by this behavior."I already answered that question!" and, of course, he would then ask it again.  The Zoloft, again, appeared to make this behavior a little more controllable.

With the advent of the "death spiral", our psychiatrist chose to start upping the dosage of Zoloft.  The strategy was to slowly increase the dosage of Zoloft staying at each new level for several days to check the outcome.  This strategy took us through about 4 weeks.  What we learned was that higher levels of Zoloft did nothing.  Also, because we filled prescriptions for a variety of dosage amounts, I can now make Zoloft change for friends ("I'll give you a 40 for a 20, a 10 and two fives.") and thus began our collection of popular psychiatric prescription drugs.

During this period (and still to this day), my son, completely aware that he was "not normal" began to speak openly about wanting to return to the "old me".  The visits to the psychiatrist appeared to lead him to believe that there would be some magical medication that could facilitate the return.  He really wanted each new dosage level to work and would briefly convince himself that it did.  That placebo effect would be effective for anywhere from 10 minutes to 2 hours.  He would then land with a thud understanding that there was no magic in "that" medication.  He desires for relief and healing were complicated by impatience. "I want to get back to the old me - now" he would say.  Even the understanding that it took many weeks to get away from the old me did not lead to a more patient approach.

We, of course, did not rely on pharmacology alone (and still do not) but more on this later...

Straw...Camel...Crack...

It was shocking news. Shocking for everyone. Shocking in the suddenness of it. Shocking in the timing. Shocking in the location. Shocking in general.

At school, at an event, the gym teacher had a heart attack and died. In the gym. Right there. The same gym teacher who taught my son. My son. The one who was already having trouble parsing death. My son wasn't really close with this teacher. And, it turns out, that like many gym teachers, fitness was not really part of his lifestyle. But it also turns out that my son's homeroom teacher was very close with the gym teacher. And, it turns out, that the entire school went into "tragedy mode" to provide comfort for all students and staff who felt they needed support.

My son, who was skeptical of such things, did not elect to participate. Instead, he lived with his thoughts and let them fester and grow unabated.

The public mourning at the school persisted for several weeks and was capped off by a memorial service. If there was any single event that broke my son, it would be that one.

Cat, relatives, gym teacher. All in about 5 weeks.

Now, you and I know that death stinks. It's a raw deal. You're born. You live. You die. That sucks. But we have the capacity to rationalize. We make it make sense by saying, we'll "live a good life", we'll "do good deeds", we'll "leave a legacy and be remembered forever". We may not believe it but we say and think those things, file the whole death thing in the back of our minds and return to our mundane day-to-day existence.

My son doesn't have the capacity to rationalize death away. Or, if he does, he's stuck on the "death stinks" thought. He can't get over that. And that's where our journey begins.

Nine Months Ago

We had two cats. Sisters. We liberated them from the Humane Society. I wanted one. But there were two in the cage and they were sisters and my wife insisted that we not "break up the family." Two cats came home with us.

They lived with us since 1992. As kittens and adolescents, they hung out together, washed each other, played with each other and slept together. As they got older, they grew apart. They got to be like a couple of old women sniping at each other and always maximizing the space and distance between one another. But they were both always very sweet to people. Quick to purr, craving and loving attention and sometimes, even, acting like a cat chasing nothing and getting all excited about thread or a housefly. But, easily, for the last 5 years, their primary activity was sleeping. Then eating. And, due to the advancing age, I believe, peeing on the carpet.

This past December, one of them slowed down considerably (if you can imagine that). She stopped eating, then stopped drinking, then grew weaker and weaker. We noticed that her mouth was bleeding and that she was losing weight. A trip to the veterinarian was in order.

As is usual for these events, the vet took a careful sympathetic look at the animal and then a careful sympathetic look at the owner and then did a quick estimate of our net worth, and divided by two to determine the cost of treatment. The cat, he said, was severely dehydrated and had a gaping wound in her mouth that might be infected, may have cancer and is lucky to be alive. He suggested a panel of tests, an overnight stay with re-hydration therapy and a batch of antibiotics. And then, he said, sympathetically, we'll determine the next steps.

After a few days, she seemed brighter and he let us take her home with a bag filled with the equivalent of several gold doubloons. Antibiotics, pain killers, prescription food, energy supplements...the works.

She lasted but a few more days at home. She again weakened, would not eat or drink, no matter how clearly I explained the price of the food. With a trip back to the vet, it was determined that she had gone blind and that the cancer had likely spread. She was in pain, she was likely quite scared and didn't have much longer left. We were left with a painful decision.

My son, who had known this animal his whole life was suddenly thrown in to a situation in which he was facing dealing with death in a very real and very personal way. He had heard of loved ones who had died. He experienced it all abstractly but here it was in a very real and concrete way. This animal was going to die and he was not going to be able to see her any more. What's worse is that we were deciding to put her life to an end.

This shocked him. And frightened him. He spoke up and offered opinions that I never knew he had or, quite frankly, I never knew he had the capacity to formulate. "It's wrong to put a cat down!" "You need to die naturally!"

We thought that maybe we could explain the situation. The pain. The suffering. The quality of life. After a slow patient explanation and some discussion with the vet, he seemed to achieve some level of resolution. He didn't like it. But he seemed to be OK with it.

Two weeks later, news arrived at our home of the death of two elderly relatives who my son knew and met. My mother was quite upset with the news and my son absorbed that grief, as well. He began to worry about other aging friends and relatives. He would speak to elderly neighbors about death and call others who lived far away. He would speak to them about whether and how they were able to make peace with death. This led to many calls and discussions with people from near and far. "Are you aware that you son is asking about death?"

Of course, we knew. And we thanked them for their patience. Most feared that he was suicidal but, in fact, that was the furthest thing from his mind. He really wanted to live forever. "I have to much to do to die", was a usual statement.

It was annoying but manageable until one more thing happened...

Every Story has "A Beginning"

My Dad died when I was 14.

That was a long time ago. Almost 40 years ago. To say he died is perhaps incorrect. He killed himself. But not in any sudden and abrupt manner. He did himself in slowly. Drop by drop...quite literally. He was an alcoholic having discovered the solace of the bottle mid-way through his life when he felt his life was not working out as he planned. I have now lived longer than my father.  When he first became depressed, he worked less and drank more. He wasn't much of a drinker prior to that.  I don't even remember alcohol being in our house.  He turned out to be a sleepy, kind drunk who would secrete his bottle in his attache case, take it with him to the bedroom, close the door, lay down, read bad pornographic magazines and drink himself to sleep midday.

I know about the pornography because I happened upon the magazines once when I was skulking around, looking for his secret booze stash in order to toss it out. We all knew about the drinking problem and I had visions of somehow saving him.  Then I found the magazines. It was a really disappointing find for a teenager entering puberty. The magazines were filled with stories.  There were one or two grainy black and white photos and lots of text. And stories. Stories so dull, I didn't even bother to read them. Apparently my Dad did. I guess he found them quite thrilling. Apparently my Dad was either a strict intellectual or so embarassed by the whole thing that he could only bring himself to go but so low.

After about two years of this, that included psychiatric treatment, pharmacological prescriptions, time with AA and an attempt at treatment in an addiction facility - he gave it up. At least, that's how I see it. His liver gave out and he stopped fighting feeling that he had nothing more to live for.

But this story isn't about me. Well, not directly. This story is about my son. Now 15, he has all manner of learning disabilities and delays, social issues and cognitive ones. He has a low IQ, poor impulse control and a short attention span. He is not autistic or maybe he is. He is not mentally retarded or maybe he is. There is no agreement in "the professional community" about him except that he is "special needs". He has commanded our attention all of his life. Colicky at birth, speech delays at age 2, motor delays and on and on. He has a file about 8 inches thick that follows him from school to school growing by about 3/4 of an inch per year.

The latest and most difficult period started about 9 months ago and is the reason for this. I am trying to make sense of it all and hope that by committing it to print, it will all somehow become clear.