Another Specialist Speaks

The holiday season provided us with a gift.  Owing to a cancellation, our February appointment scheduled back in August with yet another world-renowned expert was moved up to yesterday (Thursday).

Our son was in tip-top form: agitated, upset, violent, non-communicative - a full stage show complete with scratching, pinching and screaming. After he settled down a little, he did say to me "I want to go home". My wife had to take him home after about 20 minutes. My son took no comfort in being at the clinic and apparently was quite upset about the situation (maybe that specific one or his own or both).  I sat with the Doctor and gave him the background, answered his questions and described the situation.

The doctor said that my son's situation was unusual but not unheard of. He shared the following:

1. My son's brain may be in a state of flux right now. This could be somewhat natural changes or perhaps heralding a permanent regression of his capabilities
2. The medications that have specific and well-known effects on "normal" brains have different effects on "spectrum" brains and it is good to use low dosages and slowly raise them. He liked our approach.
3. If my son's brain is undergoing some sort of change then we are treating it using medications when it is in a state of flux and the effect of medications becomes even more unpredictable. If we think my son's condition has stabilized (at awful) then it might be valuable to go back and try the anti-psychotics again - low and slow. He said that in his experience, anti-psychotics of one sort or another are the ultimate solution.
4. He thinks that Neurontin is OK because it is well tolerated but noted that it is mild in it effectiveness. He thinks Depakote might be a better mood stabilizer even though it requires blood monitoring.
5. He thinks higher doses of Klonapin might be helpful (3,4 or 5mg).
6. He thinks the MRI is a good idea if only to rule things out.
7. He thinks genetic testing might be beneficial if only to identify chromosomal or genetic anomalies that might be able to point to a specific treatment regime.

Like some of the others, he was not wholly convinced that the death obsession was the root cause and may have only been the straw that broke the camel's back - meaning this was inevitable anything could have triggered it.

He was nice and thoughtful and did his best not to shrug his shoulders and say "I dunno".  He said he would be willing to confer with our psychiatrist and even see my son on an ongoing basis or every now and then if we thought it would be helpful.

Sadness

I may have never experienced quite so deep a sadness as I am today. 

Today is my son's 16th birthday.  We are coming on a year of devastatingly reduced capacity and engagement.  It has been a year punctuated by trials of tens of medications, reducing his freedoms, limiting his travels, shrinking his world and generally taking his life away little by  little.  There have been bathroom accidents, violent outbursts and unprovoked attacks, limited or no conversation, no engagement and limited hygiene.  We're having his braces removed because he stopped brushing his teeth.  We have given him a "medic alert" bracelet because he wanders and does not speak.  He's having an MRI because we don't know what else to do.

One year.

Wasted.

Lost.

I am tired of this and I want him back as he was. Now.  What has he done to deserve this torture?

Steady - That's About It

We've been at 45mg of Remeron and 300mg of Neurontin twice a day and things are pretty much the same.  A few words every few days.  Little else.  Still anxious and agitated.  No real conversation or communication.  Still perseverating.

I'm thinking about 2 things. 

1. Going back to check if very low doses of things we have already tried can help.  Specifically Prozac, Seroquel, Effexor and Geodon saw short periods of "awakening" as we either tailed off or built up.
2. Schedule an MRI.  I mean why not?  If there are structural problems in his brain there's nothing we'll be able to do but, I suppose, at least we'll know.

Nothing Much

Been on Neurontin at 200mg twice a day and Remeron 30mg once a day for a couple of weeks but still not much of anything.  The perseverations continue unabated.  It seems that we can get my son to act aggressively by trying to get him to stop perseverating or to get him to try to do things he should already be doing himself (like, say, wash his face).  My guess, is that the aggression is a manifestation of the anger at being unable to do those things.  The sedating effect is still in play so at least he sleeps.  The anxiety symptoms now include getting naked and constant changing of clothes, though.

We have just today boosted the Remeron to 45mg and will shortly boost the Neurontin to 300mg twice a day.  And then, when that doesn't make any difference, I don't know what we try.

More Aggression

We're starting to see a little more agression.  He attacked Mom at a school meeting today as he paced about the room while she explained his situation.  He grabbed a book and smacked her on the head.  I think that this might have been a response to her descriptions of his current state and how he didn't like it.  It could have been random, too, but somehow that seems unlikely.

Interestingly, he started 200mg of Neurontin the evening before.  I am wondering if he is showing more aggression as he starts thinking more clearly and being more upset about his situation.  That is what one might call an overly optimistic take on a depressing situation.

He supposed to take 100mg/200mg Neurontin (morning/evening) for 3 days and then switch to 200mg/200mg.  We are supposed to keep the Remeron at 30mg per day.

Remeron & Neurontin

An eventful week.  On Wednesday my son hit his teacher and was expelled from school.  This, of course, is the special special ed. school that is supposed to be able to deal with him in his basically non-functional state.  So he's stuck at home until Monday. The psychiatrist suggested we start the Neurontin and keep up with the Remeron.

So he's still taking the 30mg or Remeron (once a day) and the 100mg of Neurontin (Gabapentin) twice a day. He seems marginally more at ease but he still paces, wanders and talks to himself ceaselessly. He hasn't been aggressive to us but that is not really predictable. It could happen anytime. He has started to do things like look at workbooks (math, reading, etc), try to sit down and color and wear old clothes that don't fit him. He has no ability to focus on any of these attempted activities but I think he's using them to try to get back in touch with "his old self".

The most obvious effect we see from the medication (the Remeron, I guess) is that he sleeps at night. It is not clear to us we are seeing anything else as a direct effect. It might be the case that his attempt at activities is a hopeful sign and a result of the medications but it's hard to tell.

Six Days of Remeron

We've seen sleepy but that's about it from Remeron so far at 15mg.  We'll be upping the dosage and seeing what happens.  So far my son has been pretty much the same.  On the positive side, he has made some efforts at self-care, trying to microwave some soup for himself, taking a little more care in toileting.  On the negative side, he was extremely aggressive today, doing a lot of attacking and squealing, throwing and banging.  Still completely non-communicative, pacing and perseverating although still responding to verbal commands that require no verbal response.

Next Up: Remeron

We decided that Effexor was not being helpful so we switched to Remeron a couple of days ago.  It was hoped that its sedating effect would be beneficial and allow my son to sleep at night.  So we start - 15mg - once at night while tailing off on the Effexor.

Day 1 (37.5mg Effexor in the AM) My son slept relatively well a couple of hours after having his Remeron dosage. He woke up around 6am.

Day 2 (0mg Effexor in the AM) My son slept relatively well a couple of hours after having his Remeron dosage. He was awoken by me at 7am to go to school.

Day 3 (0mg Effexor in the AM) My son is still awake 3 hours after his Remeron dosage and seems pretty alert.  Seems like its going to be a long night for him.

His behavior all days has been pretty much the same. Constant talking to himself (the usual phrases repeated - now in a short form "I know...it's been like that...relax...I'm scared..." and steady pacing. He seems to have a need for removing his clothes when he's at home. He eats well and still quite messily. There is still no conversation but he still responds to verbal commands.

Two Weeks

My son has been on Effexor (2x37.5mg) for about 2 weeks. There is some difference in his behavior but it is slight at best. He sleeps more consistently at night (perhaps too much on weekends) but still not quite all through the night. This is the most most noticeable change. He is still withdrawn and mostly disinterested in anything beyond perseverating. He still has no interest in personal hygiene. He is calmer and attacked only once this week - today in fact and perhaps this was related to sleeping until about 2pm and so missing his morning dose. He is disengaged at school and at home paces and perseverates ceaselessly. He said a handful of words not related to his perseverations in the past week. He spoke to my mother on the phone, said he loved her and told her something else we couldn't decipher (we think it was about death).

Besides somewhat better sleep habits and a calmer disposition, I do not see that Effexor is bringing back my son as he was. It seems to simply be sedating the one we have.

Meeting with a Specialist

My son was in a state (as he has been for the past several days) in which he paced and perseverated endlessly.  The perfect to meet up with a specialist. Full on detached mode, as it were.  At the appointment, attempts were made to converse with my son but with no success.  So we spoke about the situation and I shared my observations.  He pondered my son and was puzzled.  He has seen this sort of behavior before - it's just that he never has seen it develop suddenly. Rather, kids who behave like this have always behaved like this.  The most significant takeaway was that my son was in a state of high anxiety and that was, in his mind, the prevailing and overarching issue.  He said the approach taken thus far was reasonable and what he would have suggested but now is the time to "fish in a different pond" - pharmacologically.  He thinks the SNRI medication is a good place to be although he seemed to prefer Cymbalta to Effexor and was bemused at the pharmacist's reaction to it. 

Although he said he needs to think about the sequence and priority, he suggested the following:

1. Increasing Effexor to at least 150mg/day before abandoning it

2. Trying Remeron

Three Pretty Good Days and then Back to Crap

We experienced three pretty good days Wed, Thu and Fri in which my son was lucid and conversational and engaged.  He woke up Saturday muttering, pacing and non-responsive.  Same today. This certainly sucks.  We have a couple of aggressive and violent outburst but mostly he sleeps when he's not pacing and muttering.

Curious Event ending in Heartbreak

Yesterday my son woke up and was basically lucid.  He was a little low energy but was conversational and engaged.  He went to the orthodontist, had a 50 minute procedure and was cooperative and even happy.  He spent the day doing some chores that he would usually do like feeding the cat, cleaning up after himself, going to the grocery store.  He was on facebook for a while.  He cleaned up his room and put things back in order that he had thrown or discarded in anger over the past few months.  There used to be a lego phone in his room that I had to remove because he smashed it during a tantrum in which he said he was going to call the "notorious teaching aide" and tell her that she's stupid.  While cleaning up his room yesterday, he asked me where the phone was.  I said that I put it away because he was smashing it up.  He said that had no memory of doing that.  He asked that I put it back.  He went to sleep by himself yesterday evening and slept most of the night

 

When he got up this morning, he told me it was too early.  Then he switched over to  talking to himself, pacing and being non-communicative.  One good day.  That's all we have.  I put the lego phone back into hiding.

 

He's been getting the 37.5 mg of Effexor morning and evening.

Restless, Violence then Calm then Babbling

Last night was another night of irritability, aggression and anger.  A frantic call to the doctor led to the conclusion to skip ahead to Effexor twice a day (37.5mg) (usually it is once a day for a week, first).  There was squealing, banging, nakedness and grabbing most of the evening and parts of the night. Literature indicates that Effexor takes about a month to reveal itself as helpful or unhelpful.

He got to sleep in this morning because of an orthodontist appointment.  When he woke up he was communicative and engaged.  He spoke to a neighbor, fed the cat and had a little breakfast even cleaning up after himself.  His orthodontist appointment was quite normal.  He spoke and asked questions.

When we got home, he was OK but began to start muttering and gesticulating after about an hour.  He then tried to take a nap.  I had to go to work but suspect that the degradation has continued.

We see the childhood psychiatric medication specialist on Tuesday.  The likelihood of a miracle is quite small.

Heading to a Dead End?

My son had a sort of rough weekend.  He was mostly non-communicative and often aggressive as we tailed off the Fluvoxamine.  He slept little Saturday night and eventually really fell asleep around 6am.  He awoke at about 2pm on Sunday and was quite lucid and conversational.  He helped himself to food and cleaned up after himself and went on facebook for a while.  This lucidity lasted for a few hours and towards evening, he then regressed to being non-conversational.  He had a few moments of lucidity during the evening and one moment of serious aggression.  He slept OK. 

 

When he woke up, (well, when I woke him up), he was again mostly non-communicative.

 

Because of his late start yesterday, I didn't start him on the Effexor until this morning.  I read on the web that this drug is the chemical equivalent of electroshock therapy and that it is a drug of last resort.  That last bit has me worried.   

Out with Fluvoxamine

We've been tailing off Fluvoxamine and instead we will switch to Effexor.  Looks like the "black box" warning on Cymbalta has led to this reconsideration.  My understanding is that Effexor is like the electro-shock therapy drug.  The last great hope, as it were.  If this does nothing, I don't know what we do.  As usual, whilst tailing off Fluvoxamine, we saw a little bit of lucidity. My son slept restlessly all last night and then at 6am fell asleep for real and woke up around 3pm.  When he arose, we got some conversation and interaction from him. He did a few normal independent person things (ate, made some Quik, colored a bit) but after a couple of hours headed back to muttering and incoherence including screaming and aggressiveness. By my calculations he has between 33% and 10% of the dosage level of Fluvoxamine in his bloodstream.  We'll start the Effexor tomorrow.  37.5mg.

Back to Awful

Well, the Fluvoxamine has done nothing.  OK, it's done nothing good.  My son is back to muttering, gesturing and not responding.  Occasionally, he gets aggressive and attacks.  He is mostly living in his own head.  We are dumping the fluvoxamine, letting is clear out of his system and now we are going to try Cymbalta.  Should I be without hope?  He's so gone, it's hard to remember he was lucid just 10 days ago.  In his special school they are transferring him to a more restrictive environment where most of the kids are basically non-verbal and incapable of learning.  This is the depths to which we have fallen.

When do we give up?  When do we drop him off at a hospital and say "Good Luck!"?

Ridiculous?

I was up for a few hours sitting in the dark in my son's room waiting for him to go to sleep.  He won't stay in bed unless I sit there.  He'll otherwise wake up and turn on the light and mutter to himself and pace.

While I was there I was pondering his situation.  He's been regressing these past few days with no dosage change of the Fluvoxamine (25mg).  He back to being basically non-communicative and perseverating.  I was thinking about upping the dose when it occurred to me that the proper course of action might actually be to reduce the dose.  There is clearly a cumulative effect of the drug as it reaches a steady state in his bloodstream.  We have seen this with other SSRIs and the anti-psychotics.  At the start, there is some basic improvement and then after a couple of weeks - back to crazy.

That got me thinking...maybe he's just really sensitive to these SSRIs and his paradoxical reaction is because of this sensitivity. Maybe the right course of action is to reduce the dosage lower and lower and test the reaction and behavior at these lower bloodstream equilibrium levels.  I think I'm going to try 12.5mg tomorrow...

Circles

A few days of progress and then a few days of regress.   It's positively maddening.  He's off the Geodon.  It must be completely gone.  He was quite communicative all week although quite focused on death. He got a little oppositional at school but there was some learning going on. Not a lot but some.

He's still on 25mg of Fluvoxamine.  On Friday he started getting quiet and muttering.  When he spoke he said some insightful things like "I have been wasting my life".  I tried to build on that and explain how to move on from that and not waste his life anymore.  He's not ready to receive that yet.

There was at least one evening filled with anger toward the dreaded aide. This resulted in the destruction of an old portable keyboard device (He had this to help him compose before he had a laptop). It also resulted in many scuffs and scratches in his door.

He attacked me once but not with the vigor of days gone by and without any resulting bruises or scratches.  He was also consolable.

Last night he was awake all night talking to himself about "the aide".  He slept briefly in the morning.  He ate a bit and is now sleeping soundly.

So...what now?  What happens the rest of the week?

And guess what, I think our other cat is sick.

More Words

Yesterday there were 4 violent outbursts.  Blind rage and anger at the now infamous teaching aide.  I got in his way and was clawed, scratched, kicked, hit and almost bitten.  Each time I wrestled him to his room where his tantrum continued, highlighted by door kicking and shrieks and tearing of paper and notebooks.  I was convinced the Geodon was to blame and wanted to drop it to 0mg (from 20mg).  The Psychiatrist suggested that the withdrawal side effects, even from that low dosage could be problematic.  I agreed to cut it to 10mg (by cutting the capsule in half, tossing the powder from one half and giving the other half to my son).

This morning when he awoke, my son was still muttering and pacing.  He followed instructions as usual to come and eat breakfast.  I sat and watched him in silence.  He looked at me and said "Daddy, your eye is red."  And indeed it was from my rubbing it to disperse some minor irritation.  Never have 5 words excited me so.  The he got up and walked around some more.

He then approached our house guest (who perhaps is owed a blog of her own) and said "I love you" and had a short conversation with her about death.

I looked in his room and saw that he attempted a floor puzzle.  In addition, he seems to be trying to color a little - and keeping in the lines, too.

He's still pacing and muttering (the usual phrases) but there are 4 faint glimmers of hope in a single morning.  Yet the day is long and just now started....

Two Weeks of Low Levels of Geodon

I have requested behavioral logs from the school where they are tracking my son's activities.  This week he had a short period where he did math but otherwise, paced in class, slept in class, muttered endlessly and lashed out aggressively about 4 times. At home, I saw very short glimmers of real interaction but mostly pacing, muttering and a couple of meltdowns.  Yesterday evening was particularly bad and included two situations in which he needed to be confined to his room and when inside he banged on the door and tore up paper, screamed and squealed.  The subject of the anger was the now notorious teacher's aide.

 

WARNING: Amateur Pharmacological Assessment follows

 

He's been on the Geodon for about 2 weeks now.  I worry that although the sedating effect is helpful if the aggressive outbreaks are a result of it reaching some sort of steady state in his bloodstream.  His behaviors are similar to what happened with other anti-psychotics. I also wonder if the glimmers of interaction are a result of the Fluvoxamine.  This is all "gut" feeling-based.  In light of this, though, I wonder if we ought to drop the Geodon and increase the Fluvoxamine to the next dosage level (50mg?)

Fluvoxamine

Third day on Fluvoxamine.  It's too soon to say anything. 

Yesterday was an awful day at school, a lot of acting out and aggressive behavior.  His mother, who is out of town, coaxed a few words out of him on the phone.  They were "I'm sad" and when asked why, he responded that "I'm afraid to die."  The bright side is that is was the closest to a conversation he's had in the last 5 days.

Otherwise, I'm still hearing the words of the infamous teaching aide emanating from my son's mouth.  Yesterday I started telling him that I don't need to hear any more of the words of the aide.  I need to hear his words.  I said that I knew what she said made him angry and that he thought she was wrong and stupid.  I reiterated that I need to hear from him now.  Not her.  I spent about 15 minutes on that bender.  Every time he said one of her phrases I said those were her words not his and that I needed to hear his words.  I said that he was my was son and not she.  He eventually fell asleep.

When he awoke in the morning he was drowsy, although as far as I could tell he slept all night.  He was mostly quiet but soon started in on the "aide phrases".  I reminded him that I didn't need to hear those anymore - I needed to hear his words.  Then he just said them in a lower voice.

Done with Geodon

A short experiment that yielded no tangible results except drowsiness.  Valuable in itself but no relief from the constant hum of the dreaded words of the aide.  We have decided to return to the track of treating this like OCD and head down a path paved with fluvoxamine.  Once again, starting with a low dosage (25mg) the first one applied late this afternoon.  We won't know much for 7 days or so, maybe longer.

We do now definitively know, I guess, that anti-psychotics are not helpful.

While out for a walk with my son after dinner, a short 'round the block sort of walk, we ambled while my son muttered the usual secret spell. On the way through the park at the end of our street, my son reached out to me and held my hand.  He did so deliberately and held on, not to steady his gait but just, I believe, to touch me. 

Maybe to let me know he's still here.

Maybe to let me know that he is coming back.

I can always hope, right?

Geodon - Day 5

My son's every waking moment is spent repeating the familiar phrases to himself and pacing. He responds to commands ("Sit at the table.", "Change your clothes.") as long as such commands do not require a verbal response. As best I can tell, the Geodon - like the Seroquel before it - is most useful as a sedative and has done little to break his viciously compact thought-cycle. He slept well the past 2 nights but when he wakes - the very moment he is conscious, in fact - he starts repeating the phrases. He lives out his days locked in his own world where his aide's now infamous words rule and nothing else is allowed in.

This is not materially different from the days when the Prozac level was waning except that now he sleeps.

Why?

As I type this out, my son is in a rage about the words of his teaching aide.  He is marching around his room screaming, grabbing things, jumping and sometimes crying.  Her words, once the rhythm of his perseverations, are now just sounds, distorted by his anger.  "Yoo",  "Choo", "Yoo"....

He got out of his room when I gave him his Geodon (now raised to 30mg) and he marched down to his computer, tried to log on to facebook, to, I believe, rage at his former aide online.  He was unable to focus enough to do that and instead grabbed the laptop and proceeded to bite it in frustration.  "She's not the computer" I said.  "She's not here".  "She's not me!" I said when he grabbed me  "Yoo!"..."Choo!" he continued screaming.  I was able to direct him by pulling him and pushing him back into his room

What has he done in his 15 years on this planet to deserve this torture?

Details - Where the Devil Lives

About a week ago, as we were tailing off the Prozac, my son became obsessed with bathing.  Or maybe just running the water in the bathtub.  While pacing and perseverating, he would march into the bathroom and turn on the water in the tub.  Sometimes, it appears he would forget it was on.  Once, when my wife was here alone and engrossed in some other work, the water ran for what appeared to be several hours until she realized what was going on.  It overflowed the tub and filled the bathroom.  The water seeped below the floor and into the bathroom below it on the lower level.  This resulted in about $2000 in damage which required structure drying and ceiling replacement in the lower level bathroom.

Since then we have been locking him out of his bathroom and either checking frequently to let him use it (under supervision) or asking that he call us. Of course, he has been unable to call for assistance since he only perseverates.  Twice now he was stuck in his room without bathroom access and "pooed".  It appears that he pooed into his hand and then placed the poo on his desk.  He continued to perseverate and pace afterwards leaving smears of poo all over his room and belongings.

The clean up was straightforward but deeply saddening - this is where we have come.

The Geodon has not reduced the perseveration nor the pacing.  Nor has it enabled him to speak except that one time two nights ago.

Yesterday I took him out for a short walk in the neighborhood.  He perseverated the entire time and did not speak otherwise.  What was upsetting to me is that as we walked, about six people stopped and said "Hi" to him.  These are people that I do not know yet they know him.  He was a sort of neighborhood celebrity, it appears - now reduced to the mindless and endless repetition of phrases a teaching aide told him 8 months ago in an effort to comfort him.

Geodon - More Nothing?

I know it takes time and he's only been on it for 2 days but here's what we're seeing. He gets the Geodon with a meal (as directed). About 3 hours later he falls asleep for about 4 hours. He then gets up again and stays up. When he's awake he perseverates and usually paces non-stop. He responds to commands but does not converse. Briefly, this morning, at about 3am, he was lucid and conversant. It lasted about 30 minutes. He could say who I was (Daddy) and his age (15) with a rapid response. (These are questions he does not respond to when in perseveration mode) We talked about the importance of sleep and a little about his new school. He had some milk in glass which he poured himself. He took a bath and dried himself off. These last 2 items were things he was incapable of doing when perseverating but, of course, quite capable of doing before all this started 9 months ago. He also talked about death. He's now back to perseverating and pacing.

Now with...Geodon!

The Prozac is gone and my son is now walking around talking to himself with no interaction with the outside world.  He responds to some barked commands but his brain function is concentrated on repeating the phrases of the now notorious teaching aide.  He is no longer upset or angry about thiose words or at least he is not acting out upon any such thoughts that might persist.

Yesterday night he started Geodon.  It's a low dose (20mg).  The lowest - which is probably the way to go with these drugs.  As usual, I did a large number of internet searches to learn more about this medication.  As usual, the postings were wide-ranging (miracle drug to amplified all the negatives) and mostly unhelpful.  A lot of doctors start their patients with huge doses of this drug.  From my experience that always seems like a bad idea.  Makes me wonder about the wisdom of these doctors. As best I can tell, though,  Geodon is a powerful anti-psychotic.  It seems to have a mile long list of caveats.  Take with food...a lot of food.  Take one hour before bed.  Watch for any changes in the patient.  While most often used for bipolar disorders, there is a wide variety of off label uses - depression, anxiety, OCD.  It looks like it's another adventure waiting to happen for us, though.  The immediate effect of the drug was to knock my son out after about 3 hours.  He slept most of the night.  It appears that he woke up at some point, tried to do some sort of activity (word searches, I think) and then went back to bed.

This morning he was pretty much the same as yesterday - except that he slept.  When he woke, he immediately started talking to himself again.  While waiting for the bus, he stopped perseverating a couple of times to watch some of the neighborhood kids ride by on their bikes.  When they passed, he got back to work.

While I have always found watching my son in his variety of awful states painful and upsetting, today I started feeling sorry for myself, too. 

Stable at Awful

We kept our son home from school on Monday because he was aggressive and non-functional. He was having tantrums and screaming and hitting.  I sustained some bruising and scratches in one of his blinded-by-rage attacks.  His anger was towards that teaching aide who told him of mortality.  The teaching aide spoke to him about this several months ago but in his drug-free state it became a target of obsession.

In an effort to relax him (Sunday at 4am), I gave him a very low dosage (25mg) of Seroquel (an anti-psychotic we had in our substantial collection of pharmacological paraphernalia) mostly to get its side effect (sleepiness). It helped him sleep. I told our psychiatrist what I did, expecting a stern rebuke.  He said it was the right thing to do and said to continue (I'm putting up my "Doctor" shingle, right now)

My son is now very passive and not having tantrums or acting aggressively towards others or his things or himself. He is back at school but not engaged.  The Seroquel is no longer assisting in his sleep as far as I can tell. He is mostly awake all night, pacing and talking to himself. No screaming, no hitting. During the day he talks to himself. His talk consists of repeating the phrases his aide told him over and over again but without the angry outbursts.  So the Seroquel has taken the anger out of his obsessive perseveration but has not broken that habit. He responds to commands but will not engage in conversation. He hasn't broken his obsessive patter for several days to initiate any conversation.

We are in a bad place.  The good news is that things are not getting worse.

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.

Meltdown

It's been about 8 days with no Prozac.  While generally things have seemed pretty good, tonight was as near a nightmare as I have experienced.  During the day, my son was lethargic and uninterested.  He slept pretty much the whole day.  Ate a lot when he was up.  Asked a lot of questions about death.  I got him to leave the house with me for some errand running for a couple of hours but that was as engaged as I could get him.

It seems though that there's something about nighttime that emphasizes the awful.  He started having tantrums.  Loud, near violent ones.  He was throwing pillows and hitting the walls. He broke a lampshade.  When I got near he would grab me and grip my arms or legs and squeeze. I was able to shake him off (but not calm him). I couldn't get him to answer why he was so upset.  I couldn't even get him to acknowledge that I had asked a question.  He was going on about how he was mad at some teacher who told him that everyone was mortal and going to die (about 8 months ago).

I had to lock him in his room.  He is calm right now but I feel like he could explode at any moment.  At some point, he will fall asleep.  I hope.

On The Downside

We are now working our way down to near trace amounts of Prozac in my son's bloodstream.  I have noticed something that is emerging as a pattern of sorts.  When we ramped down the Seroquel and, now, that we are ramping down the Prozac, as we approach very low levels - very very low levels,, my son seems a little brighter.  Still obsessing, but brighter.  He can converse, sometimes, even about new and different topics.  He behaves more predictably.  He carries himself a little bit better.  He can focus a little more.  He's not back to the old way.  But the fog has lifted a wee tiny bit.

The odd thing is that this happens "on the way down", as the drug is eliminated, but not "on the way up" as the drug is introduced.  I also recall seeing it with Seroquel and now Prozac but not the others. I wonder if this means that we don't (or didn't) give these drugs enough time as we ramped up or if we started too high a dosage or if there is some other pharmacological mechanism at play.

I do recall, though, that in my frustration at my son's sleepless nights, at one point, I gave him 25mg of Seroquel (half the dose he started on - when he was on it).  All that did for him was make him sleepy but seemingly had no other effect.  Maybe that was too high?

A Faint Glimmer

This morning was similar to most others.  My son was still asleep at 7AM.  His room lights were on suggesting he was up part of the night.  When I went into his room to rouse him, I tickled him to get him moving as has been our custom for all these years.  This time rather than get annoyed (as has been his most recent custom, these past few months) he laughed.  He laughed.  But then he got annoyed but at least he laughed.

The rest of the morning followed the usual trajectory as he remained lethargic and uninterested.  I coached him into dressing.  I marched him into the kitchen to eat.  He asked me about death.  I told him that I only talk about matters to do with living.  He ate a little.  Tried to go back to sleep.  I let him sleep for a bit and then marched him outside to wait for his bus to school - hoping the chill of the morning air might rouse him.

It had little effect but I kept him by the door as we waited.  The bus was late and I began to worry.  Then I realized that I didn't have the contact information for the new transportation company.  I left him by the front door as I searched hopefully for some sort of memo or note about the new transport arrangement.  He was slumped in the doorway, sort of sleeping, occasionally muttering about not enjoying life or fearing death.

Then I heard "Bye, Daddy".  I ran to the front door, the bus was there, my son was marching to it, the driver was apologizing for being late. 

"Bye, Daddy"

I haven't heard that for weeks.  He used to wait by himself for the bus or ride his bike.  He would take off and say "Bye, Daddy" while I was busy tending to other menial chores.

"Bye, Daddy"

Is it wrong to be hopeful?  Is it wrong to see that as a step in the right direction?  Am I setting myself up for some grand disappointment?

Probably.

Upping Prozac

The new strategy was to raise the dosage of Prozac to a level that has shown success in dealing with obsessive compulsive tendencies.  Seemed like a good strategy.  So we started off down that new path.  We knew that the effect of any new dosage level would take about 10 days to reveal itself.  As always, we remained hopeful.

Sure enough within 10 days - pretty much as expected - we saw the new outcome.  And it wasn't pretty.  The behavior showed distinct similarities to those of my son's reactions while on the anti-psychotics.  The total self-involvement, the persiverating, the sleeplessness.  So we brought the level back down.  While the behaviors subsided somewhat they did not return to even the manageable level of madness previously experienced.

New and exciting obsessions started, constant bathing, for instance.  Constant clothes changing. 

It was therefore decided to get off the Prozac entirely.  And so another set of bottles of various dosages of a drugs goes into storage.

That basically brings us to now.  We are letting the Prozac go, waiting for it to subside in the bloodstream.  The plan is to switch to Fluvoxamine - a drug more typically associated with treatment of OCD and depression but specifically OCD.

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.

Anti Psychotic...Pro Psychotic?

The issue seemed to be non responsive to anti-depressants.  It was decided that amplifying the effect of the anti-depressants using a small dosage of anti-psychotics was worth a shot.  Since my son was often viewed as being "on the autistic spectrum", the anti-psychotic of choice was something known as Risperdal.  Nothing to lose...let's give it a shot.  We already have learned that my son is a slow metabolizer of drugs so we would have to wait a while to check the effectiveness of the treatment.  Or so we thought.

He took the first dose.  It was low.  And within a couple of hours, he was squatting in front of the mirror in his room, staring at himself, muttering quietly.  He would not move.  He would not respond to questions or attempts at conversation. He just stared and muttered.  We tried it for two more days.  But clearly it was making my son psychotic in a manner heretofore unseen. I arbitrarily decided that he wasn't going to take it anymore.  It took about 3 days to work its way out of his system.  Then he returned to "normal".  Not the old normal, of course.  The new "obsessed-with-death" normal but at least he was back.

After that disaster, we decided to try Abilify.  Again, we started with a low dose.  It seemed pretty much uneventful and then after about 5 days, my son started having involuntary muscle spasms.  His head kept drifting to the left and then getting "stuck".  He couldn't straighten it.  Or when he did, it would slowly drift back.  He would also stick out his tongue - also, seemingly involuntarily - in a sort of snake/Michael Jordan manner.  A frantic call to the psychiatrist, resulted in an over-the-phone diagnosis of a drug side effect called tardive dyskinesia that could be treated with a shot of Benadryl.  This side-effect was not unheard of but not so usual. 

Once we got to the emergency room, they confirmed the diagnosis.  We were there for about 6 hours while they waited for the Benadryl to take effect and make certain that everything was OK.  My son took advantage of this situation to ask every medical person who assisted him whether they thought he was a candidate for a heart attack.  He also let them know he was unhappy with his current depressed state and wanted to get better.  He solicited their recommendations which were similar to those he had heard before (eat well, exercise, do good work - or a subtle variant thereof).  He was charming and sweet, as he usually is when he is not obsessing, and even hugged the ER doctor as a gesture of thanks for resolving the spasms.  I was hopeful that the advice would be taken to heart but I knew it would likely soon be forgotten. (and, of course, it was).

We decided to continue the Abilify but now included a drug to counter the muscle spasms.  Our psychiatrist urged us to solicit additional opinions so we did.

Fears & Thoughts About Death - Clarified

In a recent moment of clarify, my son was able to enunciate and itemize his fears and thoughts in a very specific manner:

1. He is afraid of dying and does not want to die.  He wants to live forever.
2. He is afraid of dying because he does not want to go to Heaven.  He doesn't like Heaven and doesn't think it's a good place.
3. He is afraid of dying because he doesn't want to be alone.  Specifically, he does not want to be buried and left all by himself in a cemetery.

Because of the concrete nature of his thought process, the specifics of the concerns cannot be addressed philosphically.  Answers must be black or white and irrefutable.  I have tried these answers with limited or no success:

1. You can live as long as you want - you just have to take care of yourself.  That's what the Ray Kurzweil book is all about.
2. If you live as long as you want, you don't need to worry about heaven.
3. If you live as long as you want, you'll never be alone.

Prozac, Not Really Listening

When we learned that Zoloft was not having any helpful effect, it was decided to switch over to Prozac.  Prozac is well documented in the literature in its use on teenagers.  It also has more "headroom' than Zoloft on that larger doses can be given.
The switch involved tapering off of Zoloft while increasing the dosage of Prozac over the course of a couple of weeks.  This also meant that there would be a time where the amount of anti-depressant in my son's bloodstream was minimal.

It was also during this time that we decided to cease giving my son his daily Concerta which he had been taking for his fleeting attention span and somewhat impulsive behavior.  Since Concerta is an amphetamine and my son was already quite "amped up", it was felt that it served no useful purpose and perhaps masked the effectiveness of the anti-depressant.  What I did notice though is that his behavior since the cessation has been more impulsive and his attention more fleeting.

Back to Prozac.  The tapering partially occurred while we were away at a family weekend.  Perhaps owing to the wider audience but perhaps owing to the change of medication, my son put on quite a show.  He was oppositional and had frequent tantrums.  He would tell others that we didn't care about him and wanted him to die.  He would say that we weren't willing to help him.  He did, however, get it together enough to participate in a few activities but, for the most part he was in pretty bad shape.  What's odd, is that when we got back home, he told our neighbors that he had a great time.

As we slowly ramped up the Prozac, we again saw very little if any difference in his behavior.  This led to an attempt to use a class of drugs known as anti-psychotics.  These drugs are used in tandem with anti-depressants because they are thought to have an amplifying effect on them.  Apparently, this amplification is selective and amplifies "the good things" and not "the bad things" of the anti-depressants.

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.

The Things You Do

While attempting combat on the pharmacological front, we also attempted a variety of techniques to shift behavior and thought processes away from the "Harold and Maude"-ish.  Understanding my son's limited intellectual capacity, we would try to keep the advice simple and concrete.  A strong "do this one thing" instruction with the reason being "I know because I read it in a book".

We used three rules for a time.  The rules were simple:

1. Eat Well.
2. Exercise.
3. Do Good Work.

That last rule covered everything.  We used it for "being kind to animals" and "listening in class" and just about any other thing we could think would fit.  While easy to remember and remarkably easy to explain, we hit the wall quickly. The problem was that when he exercised, he felt great while he exercised.  But when he stopped, he started to feel bad again.  In his mind, this meant the therapy did not work since it had no lasting effect.  There was, therefore, no sense in continuing.  No amount of reasoning would help.  In his mind, the results were obvious and irrefutable.  I did it and now I feel bad so it doesn't work.

A neighbor introduced my son to the "teachings" of noted inventor, futurist and (now) high-end vitamin vendor Ray Kurzweil.  Mr. Kurzweil's thesis in his book, Fantastic Voyage, is that we are at the point in technological development that if you take good care of yourself (buy my vitamins) and live healthily (buy my vitamins) then within the next 50 years bioengineering, medicine and associated technologies will have advanced to the point that you will be able to live forever.

My son carefully wrote down the book title and insisted on purchasing it.  I thought that anything that encouraged him to read would be fine.  The book is written for an adult reader and includes long explanations of science and chemistry.  I agreed to read the book aloud to my son and re-interpret it to simpler terms on the fly.  The book quickly became uninteresting to my son because it was not really an instruction manual (save for the vitamin pushing).  My son was looking for the 10 simple things to do to live forever (emphasis on simple).  I even tried to explain that our three rules were embodied in the text but my son remained skeptical of that.  He never asked me to read the book to him anymore but I would sometimes catch him flipping through it seemingly looking for that magic incantation.

Exercise often helped, if but briefly.  A strenuous bike ride or some challenging martial arts made him feel tired and happy but always, the loss of endorphins afterward left him denying the benefits.

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.