A few weeks ago, at Special Olympics State Games for Massachusetts, Nat’s team began their relay. At either side of the pool stood teammates waiting to jump in for their turn.
Nat was third. As the second swimmer approached, he stood alert, waiting. When it was time, his body curved into an arch, ready to dive.
He stood their, poised over the lip of the pool, not moving.
“Nat, go!” I yelled.
I yelled again. And again. I tried to walk closer to where he was standing, but I was blocked by a lot of people and a wall. Ned joined in, shouting at Nat, trying to get his attention. We screamed ourselves hoarse. “He has a different coach over there,” said Ned. “She doesn’t know to tell him to get in the water.” My anger shot way up. Why would they do that? What’s with that, a different coach!?
“NAT! GET IN!” I willed him to get the f*** in that pool. This was SOMA State Games, Nat’s favorite day of the year. Why wouldn’t he move?
Finally, after what seemed like hours, and after the race was long over, Nat went in. He swam great. Everyone in the stadium clapped. This is Special Olympics after all, and every single person there knew this could have been their kid. And every single one of them was thinking, Great! He finished!
But this was not over. No, because this kind of thing had been happening since perhaps November. Nat would come home as if in a daze. No smiles, not stimming, no pacing. No self-talk. Just standing or sitting very still, hands slightly out in front of him, his lips drawn tightly over his teeth as if someone had said, “Nat! Close your mouth!”
So for months I had been worrying that someone somewhere was being mean to him, abusive, and his spirit was being crushed. I kept asking him, “Is someone being bad to Nat? Are you hurt? Do you like your job?” Peppering him with all sorts of useless questions, just indulging my panic. Nat can’t usually answer those sort of questions accurately. I don’t know where the sentences I shoot at him go, I imagine lances falling impotently as they hit his Kryptonite skull. Except Nat is the good guy.
I’ve been a mess. Never consistent as a mom, never the kind of mom recommended by 4 out of 5 autism specialists. I’ve been doing everything: coddling him, prodding him, prompting him, leaving him alone, giving him space, nagging him, and just worrying out of my mind about Quiet Nat. Everyone has been noticing. His caregiver (of course). The Day Program. My parents, my sister. He was this way even with them, his favorite people. And at the ice cream store. Quickly and stolidly eating his ice cream, but no joy. No one could get a smile out of him, ever. He just kept standing there, so still, so frozen.
And intermittently, he would be extremely giddy, giggly, almost out of control to the point where when laughed, spit would fly out of his mouth. “There’s no middle ground,” a job coach wrote in his notebook to us.
What was it? Seizures? Depression? Bipolar? Abuse? But if abuse, why would he be able to laugh at other times? And willingly go back to his routines of living with his caregiver and going to his day program? And anyway, there was really no way I could actually believe that he was being abused by any of these caring people in his life. Even though I explored this as best as I could.
Off to the doctors. Several different specialists later, we went to our neurologist of 22 years. She watched a brief video Ned had taken of Quiet Nat, and she said, “this is not seizures. This is not depression. This looks like catatonia to me.”
What was that? “Catatonia. This is a small subtype of autism. It means he freezes up. He can’t move forward. Can’t do the simplest things at the moment he’s experiencing it.”
“What do we do?”
Unfortunately, she did not know much about it, but there were two specialists in the country who did. One was in New York.
That night I wrote to and talked to various expert parents I know, who gave me an idea of the treatment: an Ativan-type of drug. One friend even told me two tablets of Curcumin, from the Turmeric family. Curcumin has been thought to prevent Altzheimer’s, though I don’t know if there are actually peer-reviewed, double-blind studies. But Ativan is a drug a lot of people know about, so I am not afraid of it.
We have an appointment with the New York specialist on July 2. Stay tuned for more.