I’m sorry. I left you hanging. I wrote a post titled “Everything Is Wrong” and then stopped posting. I’ve received so many emails over these last many months, expressing concern and wondering what happened.
I’m here to say that everything is no longer wrong. We have struggled through one of the most difficult years of Martin’s recovery from autism, and we are not back to baseline yet. The kid we had in June 2018—the one who made a handful of friends on his own and was “totally part of his class”—that kid is showing up a lot of the time, but he still hasn’t returned entirely.
Here’s the history, in brief: Last summer, in Costa Rica, Martin tanked. In order, fluidly, with overlap, the following sequence manifested:
– Martin started asking to go to the bathroom constantly, sometimes only a minute or two after the last time he’d gone to the bathroom.
– Martin’s genitalia started to bother him, and he wanted to touch/adjust, all the time, everywhere.
– Martin developed physical tics, including putting his fingers ritually into his nose and mouth, and eventually adding his backside to the mix, then his elbows, prompting my brother Eddie, a Red Sox fan, to declare that Martin was learning baseball batting signs.
– Once Martin got back to school, the physical tics were replaced by a kind of verbal tic, which made him blurt inappropriate words and statements.
– Martin became obsessed with Nicole, a girl in another grade, singling her out whenever he saw her, even asking to visit the restroom so that he could bang on her classroom door.
These actions frightened little Nicole, who’s about half the size of Martin. That’s about when, on the advice of Martin’s New York doctor, we put him on antibiotics, the last resort. (Antibiotics may bring a PANS flare under control, but they also decimate gut bacteria.) Eight weeks after we started antibiotics, I told you everything was wrong.
Take a deep breath.
I don’t know whether the antibiotics helped. Based on timing, I don’t think they did. At the end of January we traveled to California to see Martin’s MAPS doctor, who created a plan for phasing out the antibiotics after three full months of use. She changed a number of antimicrobials, strengthened a few others, added detox helpers, encouraged us to hang in there.
We hung in there. So did Martin’s school team, I’m happy to say. They called a CSE meeting to switch Martin from a two-on-one aide to a one-on-one aide. Though the change felt like a step backward, Adrian and I didn’t object. There’s no point in denying reality. Then the behaviorist created a non-punitive behavior modification plan to help Martin stay away from Nicole. His aide, now responsible solely for Martin, started taking him into the hallway at the first sign of trouble, before his classmates could hear his inappropriate statements.
Slowly, far too slowly, the situation improved. Once Martin started to get control of his mouth in school, we went through a funny period: When my brother or I picked Martin up at the end of the day, he would smile and trot quickly to the car and, once inside with the doors closed, swear a blue streak. Random profanity. Utterly inappropriate comments not directed at any stimulus in that moment. Apparently Martin kept a steaming pot of threats and swear words inside himself throughout the school day and needed an outlet when he felt safe. So we let him pour them out. Day after day, Martin spent car rides between school and evening activities cursing like a sailor.
That behavior, too, faded, down to an occasional “s—t” or “f—k,” sometimes under his breath, sometimes aimed directly at me to test the waters. He got control of himself around Nicole, mostly. The tics disappeared except for times of high stress.
In April came a major turning point. During the Easter/Passover break, Adrian and Martin took a weeklong trip to Spain. Just the two of them. I spent hours separating Martin’s supplements and other pills into baggies labeled “Monday wake-up,” “Monday breakfast,” “Monday afternoon,” and I created an abbreviated schedule for only the drops Martin needs most, mainly antimicrobials, so that Adrian would carry only one small container of bottles. Then I dropped them at JFK, and off they went to Madrid, Sevilla, La Alhambra, and Cordoba. I was terrified about how the trip would go. Martin was improved but still not himself. His anxiety was high, especially about food and food allergies, and for the first time they’d be without my services in finding and preparing meals. (Martin’s epi-pen went with them too, of course, in a sleek new carrying case.) So—fingers crossed.
What happened? I don’t know, exactly. They had a great time, and Martin came back a different kid. His behavior improved, his anxiety dropped, and he became more focused. When he returned to school, he had his first week of five days without a behavioral infraction. (Again, his behavior-modification plan is non-punitive, so he’s not being punished for actions out of his control. His school team has been fantastic on that point.) The teacher and aide were so excited that on Friday they made a “Certificate of Achievement: Phenomenal Week” to send home. The next week, five more clean days. And the next week too. In all, Martin went three weeks and three days without a major infraction. When he finally did slip up, the behavior ended more quickly, and Martin responded well to correction.
Right now (school hasn’t ended for the summer yet, up here in the Northeast) Martin is having about one behavior infraction a week. In most cases, he makes some hurtful and provocative remark, like telling kids that he lives in a mansion and they live in a neighborhood with robbers. This is horrible, and for the record, we are privileged to occupy a lovely single-family home, but hardly a mansion, and there is no neighborhood beset by robbers in our safe little suburb. The comments seem to be a matter of impulse control: An awful statement comes to his mind, he blurts it out, and (immediately or later) he feels sorry. At bedtime he might say, “I’m a bad kid. No one can like me. Why can’t I stop saying these things?” or “Why am I obsessed with Nicole? Are kids scared of me?”
Also, he remains anxious. He’s anxious about whether he’s allowed to eat Frito-Lay products if they contain genetically modified ingredients. He’s anxious about how many kids can or cannot come to his birthday party. He’s anxious about school. And home. And the park. And his bed.
Yet he’s so much closer to baseline. I think we may even be beginning the slow process of fixing the damage—that is, the damage to his fledgling friendships. He made so much progress last year. It’s tough to keep friends when you’re telling them that you are rich and they are poor. This will take time.
About that trip to Spain: Adrian, whose country of origin is Hispanic, is something of an Iberophile. He has longed to share that with his son, especially to take him to La Alhambra. Their trip was a risk that delivered, in more ways than we could have anticipated.