These past six or seven months have probably been the most challenging since we began biomedical recovery eight years ago. Martin has tanked beforebut never so dramatically, or for so long. Thats not why I havent been posting to...
These past six or seven months have probably been the most challenging since we began biomedical recovery eight years ago. Martin has tanked beforebut never so dramatically, or for so long.
Thats not why I havent been posting to my blog. I promised honesty about the disasters as well as the pinnacles, and Ive followed through on that promise. No, I havent been posting because I started a new position in August (if youre keeping track, now I have two jobs, both part-time), and that combined with meeting Martins needs (the cooking! all that cooking!) has kept me awfully busy.
Yes, Im doing too much. Yes, thats part of who I am. But I love both of the positions in which Im working. My only worry is whether I have time to meet Martins needs. On that point, I must be scrupulous.
The troubles began last summer, in Costa Rica. Martin started feeling like he had to pee constantly. He might finish going to the bathroom, wash his hands, and return five minutes later. He sometimes required three trips to the bathroom before we could leave the house for camp. When I asked whether he really needed to go, he might reply that he thought he needed to, or that he wanted to adjust his privates. Clearly, some irritation was plaguing Martin.
Next came the physical tics. The first tic was thrusting his index fingers into his nose and then his mouth. Not picking or fiddling, thank heavens, but thrusting. Often. By the time we returned to the States and Martin started fourth grade, he had added eye rubbing. He pushed his knuckles roughly into eyes, then moved his palms in circles on his eye lids. His eyes looked red and sore.
The nose-mouth tic faded, only to be replaced by a need to touch his genitals and then his backside, almost ritually. You can imagine what this did to all those fledgling friendships Martin had been assembling toward the end of third grade.
Desperate, I allowed Martins New York doctor to put him on antibiotics. I had to hit desperation before we tried antibiotics, because antibiotics are destructive to gut health, and poor gut health has been one of Martins toughest health issues. Long-term antibiotic use, however, is known as an effective treatment for PANS. We believe Martin is suffering a PANS flare, and when you see your 10-year-old constantly frustrated because he feels compelled to touch his private parts, even in front of other kidslets just say youll try almost anything.
The self-touching did fade, thank heavens, only to be replaced by a verbal tic. Beginning in December, Martin lost control of his mouth and, in response to the slightest frustration, blurted inappropriate phrases. I mean really inappropriate. Its no longer limited to, I hate you, or, Stupid! Hes called his teacher, and me, bitch. He told his classroom aide, Die, scumbag! His classmates are idiots, whom he informs, I have a girlfriend in second grade. Were having sex. (Please believe me that these are not phrases that are used in our home, I begged his teacher one day, unable to account for the behavior.) Often, after Martin says such things, he becomes upset and apologizes: I dont know why I said that! I knew it was coming out, but I couldnt stop it in time!
As is characteristic, Martins skin has been a mess since this ordeal started. He claws at his arms and legs, which are marked with bloody spots and recent scars. Mornings and evenings we massage him with CBD oil. The CBD oil helps but doesnt resolve the irritation, which originates from within.
Martins school teamhis teacher, his classroom aide (shared with another student), and his behavioristare terrific. They understand that the behaviors are out of Martins control, so he is not punished, not even for the most egregious name calling and acting out. (If I were a teacher, being called the b-word in front of other pupils, I might not have had the same self-control.) Theyve come up with a incentive-based rating system: Every day we receive a sheet rating Martins behavior from one-to-five stars, with a number of categories (Did I keep my hands to myself in the hallways? Did I use kind words during recess?) and a space for comments. Evenings, Adrian and I discuss the report with Martin in the least threatening way possible, and strategize for how he might do better.
Last week, Thursday and Friday, Martin finally had two five-star school days, with no inappropriate language. Saturday, my brother Eddie took Martin to the City for one of their big adventures and reported excellent behavior. Saturday evening Martin vomited his dinner and went to bed early. Throughout Saturday night and Sunday morning, he vomited. Sunday he voluntarily spent the day in bed, without complaining. By Sunday evening he felt better enough to start eating again, and he asked me not to cancel a pre-planned playdate Monday morningit was the Martin Luther King, Jr. holiday, so the kids were off from schoolwith Ryan, a boy from last-years social skills playgroup.
The playdate went really well. Ryan is a year younger than Martin, with corresponding developmental delays. The two conversed fluidly, albeit about unusual topics. They were, for example, both incensed with the school districts decision to have classes the day before Thanksgiving 2018, when that day was off in 2017; this gave them 10 minutes conversation or more. After a while, Martin wanted to fall back onto his standby, screen time. He asked whether Ryan wanted to play Fortnite. Im not allowed to play Fortnite, Ryan replied. To my relief (I was eavesdropping from the kitchen), Martin said okay and suggested LEGO instead. They played LEGO.
Could we finally have turned a corner? I asked myself. Two five-star days at school, taking care of himself while sick, and now a successful playdate?
Hope is a train I shouldnt always board. It sets me up for deflation.
Tuesday, Wednesday, and Thursday this week were three-star days, or worse. On several occasions Martin tried to hit other kids. To hit other kids.Hes never been a hitter. And he was throwing the word idiot around.
Heres the summary of right now: Martin has been on antibiotics eight weeks. The constant bathroom-going and most of the physical tics have ceased, though not soon enough; he has lost virtually all the friends he gained last year, when he had such a tremendous spring semester. His state of being cycles from anxiety to meltdown to uncontrolled silliness. He loses control over what comes out of his mouth.
Im trying to focus on whats happening on a deeper level. Martin is conversant, much more than he used to be. He is self-aware, and sorry for the consequences of his behaviors. His inference skill has improved, and with it, his reading comprehension. He had such a good weekend that Im starting to believe we might be getting close to leaving the PANS, or whatever it is, behind.
And hes trying.
But today he told his teacher hes going to blow up the school.
Here we are.