Jonathan and his friend Leonard planking.

By October of 2016, the evidence became apparent that our family faced a problem. We had been seeing the psychologist who originally diagnosed Avner’s ADHD and Autism Spectrum Disorder (Asperger’s Syndrome). His insight and guidance had helped us find our way during those crisis points. We hoped that he could point us in a helpful direction with Avner’s high school trouble. What Dr Schmidt saw in Avner, clearly caused some level of concern. 

Affability and approachability serve the psychologist’s trade well. Casey Schmidt possesses both qualities to the extent that his office always seems inviting and safe, regardless of the chaos otherwise filling our life. His grey hair, rimless glasses and genuine smile give him a professorial appearance. I’ve always been very comfortable with him and his approach to Avner’s behavioral problems. 

These sessions were different. If we made Avner attend sessions, he would not participate. Behavior at school continued to degrade. He would fall asleep in class. Ms Goad, who helped with Avner’s transition from middle school, could not wake him at one point and nearly called emergency services. The chemistry instructor was beside himself, feeling personally affronted by the student sleeping in the front row, who if awake would become belligerent and argumentative.

When discussing Avner’s attraction to adult internet content, Dr Schmidt expressed serious concerns and shared the name of a police officer working local internet crimes. He suggested that the officer might be able to encourage caution on Avner’s part. “Not quite scared straight” was the description, as I recall. 

When I did reach out to the officer, the visit was characterized by Avner clutching a pillow and declaring that he didn’t know anything about the adult content.

As the officer left, he told me that Avner didn’t fit the profile of kids getting caught up with internet porn. He presented himself very childlike and frightened. If we needed him again, we could reach out. 

Mornings were the worst. Avner would roll violently striking out blindly if we tried to wake him with any physical contact, like rubbing an arm or shaking a shoulder or leg. If we touched his legs before he woke, he would kick violently. I learned to move quickly and avoid any injury, but Barbara caught a kick to the arm that raised a significant bruise.  

Dr Schmidt changed the tone and direction of our sessions about that time. He made two important suggestions near the end of October 2016. He suggested that Avner should see a psychiatrist who worked out of the same practice once a week. He also strongly suggested that we consider a residential behavioral program. He felt that Avner’s apparent turn towards violent behavior warranted such a drastic move. He suggested a couple programs that we could look into as possibilities. We were frightened and worried. 

I spoke to my mother and confided with her about our concerns. She reached out to her friends that I now call the Jewish grandmother’s network and reported back to me that she heard a few good things about some of the programs.

Barbara and I had difficulty maintaining a healthy relationship. Everything we tried seemed to fail. If the expert advice was being followed with little success, it was easier to suspect the other of undermining our efforts to make the program work. Barbara started to become fearful of Avner and his strange outbursts. 

Avner would become mute and disconnected from everything else around him. On one occasion, he left the Scout House to sit on a bench outside. When our Scoutmaster, Crill and I tried to speak to him, he refused to acknowledge us. I tried to get him into my car at the end of the meeting. Instead, he got up and started walking towards home, only a mile away. I called Barbara from the Scout House to let her know that Avner was walking home. He walked past her which worried us both, but eventually turned around and came inside. 

Avner had random outbursts of frustration and would go to his bedroom or to the spare room he used as a playroom when he was small. He would start pulling everything out of the drawers and tossing items across the room. He wouldn’t speak, but after one such episode, he broke down in tears. 

This was also the period when accessed adult content from Barbara’s computer. Avner became openly belligerent and very rude. It wasn’t the child we knew. It violated everything we worked towards as Scouts.

Oddly enough, and unrelated to anything else, Avner would set the air conditioning thermostat as low as it could go. We would frequently find ourselves turning the temperature back up. Along with never closing doors behind him, he had picked up a collection of behaviors that didn’t seem malicious but collectively caused frustrations for Barbara and me.

We finally met Dr “A” as she was introduced to us. Dr Melody Agbunag took our curious case. She’s a dark haired Asian woman who acquired a taste for Jewish cuisine from a colleague in medical school. At the time, she was one of only two pediatric psychiatrists in Tallahassee. Neither of which was seeking new patients. We felt extremely fortunate to have Avner seen. 

We had taken Avner to the other psychiatrist for insomnia related to the use of stimulants. Ironically, it may have been under the care of Dr Speer that Avner experienced his first hypersomnia episode. We were not comfortable with her cool businesslike manner. She impressed us as entirely focused on the dispensing of medication with little interest in the patient. 

Dr Agbunag listened to us and started Avner on a course of Zoloft. She considered it relatively benign and might address possible depression and it would function as a baseline mood stabilizer. Avner’s mood seemed to improve for a while. Soon after, it declined again. 

We continued to see Dr Schmidt as well. We believed that we saw some improvement with the medication, maybe Avner needed a higher dose. Maybe the daytime sleepiness could be addressed by increasing his stimulant medication. Maybe he needed to stop snacking late at night, a habit common to some ADHD kids whose appetite is suppressed during the day. The only other option seemed to be sending our child away to live with other disturbed children supervised by strangers, so we followed the advice. 

Meanwhile new behaviors started to emerge. Avner would obsessively dismantle objects. Mostly, he was attracted to objects with magnets and electronics. However, almost anything with moving parts might be found dismantled. 

disassembled items in Avner's room
The chaos which was Avner’s room in November and December of 2016. Many of his own belongings have been taken apart and parts scattered around the room.
  • He managed to destroy the rivet on a pocket knife allowing him to pull the blades out. 
  • He destroyed a treasured Dr Who pocketwatch he received for his bar mitzvah.
  • He dismantled two VCRs we had in a closet.
  • When the VCRs were gone, he found a disused TiVo and took it apart as well. 

It’s worth noting that the destruction wasn’t as simple as smashing and breaking. Avner methodically dismantled those objects. He unscrewed every screw. He unwound and pulled off the wrapped wire around the armatures of motors. He carefully disassembled hard drives, removing each magnetic platter, taking out magnets and read/write heads. He pulled out each component, one at a time with skill and care, without making a sound, without a word. He claimed to have no memory of these incidents, even though I caught him doing it once. It made no sense. 

The other thing Avner didn’t remember was drinking a bottle of maple syrup. He adamantly denied any involvement. We explained that neither Barbara, I or the dog drank it, so it only seemed logical to conclude that he had. Regardless, he refused the logic.

We were frustrated and worried. Dr Agbunag hypothesized that maybe this was some kind of Obsessive Compulsive Disorder, or a strange expression of bipolar disorder, but Barbara and I had no family history of bipolar disorder. Dr Agbunag added Abilify to the chemical mix. We didn’t know what else to do. I searched for short term residential programs, maybe something that could help work to stabilize Avner’s increasingly bizarre behavior.

Around this time. I made a fateful observation when meeting with Dr Schmidt. I said, “I’m about one class shy of a minor in psychology, which qualifies me for absolutely nothing, but I did learn that sleep can cause some very strange behavior.” Dr Schmidt concurred with the observation. He said that if I really suspected a medical problem, then we had to eliminate that first. I started researching sleep disorders for an explanation.

An uncomfortable Thanksgiving holiday came and went. Avner mostly isolated himself and only briefly made appearances as required by the family. At one point, before we left my family in Miami to come home again, Avner sang something he had been working on in chorus. Everyone was transfixed. His mood abruptly changed and everyone backed away. 

Eventually, I would call his mood “the monster.” We never knew when it would come and go, but it was always unpleasant. 

Avner stewed in the back seat of Barbara’s car. He collapsed asleep for a nap. When he awoke, he was friendly and pleasant. He also had no memory of the visit with my brother’s family. 

***

When we returned to Tallahassee, it was time for the scout troop Christmas tree Sales again. Somehow, early December seemed almost pleasant. We probably attributed it to the latest tweak that Dr Agbunag made to Avner’s medications. 

By this time the cataracts that had developed as a consequence of the vitrectomies earlier in 2016 had advanced. I no longer drove at night, and may have stopped driving altogether. I scheduled an appointment to see a local cataract specialist. 

Avner and I liked the Sunday afternoon shift at the Christmas tree lot. Among other things, it allowed me to attend Shabbat morning services at the synagogue. 

Knowing that our shift would be over after dark, I suggested that we ride our bicycles down the road to the Scout House. It seemed like a good idea. It was an easy ride to start our shift. 

At the end of our shift, I asked Avner to lead the way home. I followed the flashing red tail light as we rode on the sidewalk. I was moving slowly, and felt most comfortable out of the road at the time. 

We made it past the big  crosswalk at E Bradford Rd. I couldn’t see the sidewalk. I couldn’t see the curb, or the margin of the grass between the sidewalk in some places where the sidewalk didn’t just drop off the curb to the moderately busy road. I stopped in abject fear. I called for Avner, but he didn’t hear me above the road noise. 

As far as I was concerned, I was in a dark place beside a road. I knew roughly which way to my home and which way back, but I didn’t know if I was next to the busy street or a couple feet safely away. I dismounted from the bike. I used the bike frame to steady myself. It’s amazing how many basic balance cues come from visual feedback. 

I inched the bicycle forward. I was standing on the left side of the bike. I swept around the ground with my left foot, brought my right foot forward and repeated the process. I watched Avner’s tail light get dimmer with distance. He was completely unaware of my absence behind him. I continued to feel the ground for clues about my location relative to the road. The intersections were well lit but the spaces between were just sensory voids. The couple small residential side roads near my house were especially dark without any crosswalk. Eventually I made it home, mentally exhausted.

About that time, Barbara took me to see the cataract doctor. With two other eye surgeries earlier in the year, I had maxed out my out of pocket medical expenses for the year. I could barely see my computer screen to work. I was trying to take care of Avner while Barbara took care of me and our business. I was determined to get the most from our insurance that year that we could. We scheduled the cataract procedures a week apart in December of 2016. 

Photo above used with permission. Jonathan (left) and his friend Leonard Nash (right) planking on Thanksgiving weekend, around the same time that “The Monster” came and went Avner.

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