Homecoming, Mum and Ribbons, and “The Management of Grief”

At last, Homecoming happened.  Participants seemed happy, and most important, I got to see the hallowed MUMS and RIBBONS.  The Unicorns won their Homecoming game, the homecoming king was not only a football player but also a tuba player, the stands were packed, and all was right, or at least status quo, with the high school world (at least for those involved). 

And I got some decent, though not necessarily good, photographs.  Oh yes, and Tanya, thank you Tanya, took the first below of my daughter (Colin's evil sister), there from her middle school dance team to be a guest of the high school dance team:



Chloe to left, Old Mum to right.





Might Unicorn Band, preceded by its trio of Drum Majors (Colin among multiudes behind).





Clarinets with mums, including, somewhere, Colin minus mum.





Mum madness (the parasites of Homecoming night, mums migrate to anything or anyone nearby)





Nice ROTC Guy with real, live Sword (sans mum).  Chloe would have died were she nearby when I took this.  Even Colin might have noticed his crazy old Mum.



Homecoming court standing in front of the Unicorn Band.



Cheerleaders plus miniature guests plus mummed megaphones. 



However, of course, however, at some point not long after the sun went down, I thought Colin looked upset.  The stands were packed and the dance team had left for some reason so my view of Colin, usually gotten through the rows of dancing girls, was unimpeded.  In any case, Colin did not seem happy.  He was fidgety, frowning slightly, not smiling when he had to stand with the rest of the clarinets because the director called on them to participate more.  After a time, he worked his way to the end of the row, asked a chaperone something (presumably to go down to the bottom of the stands) where talked with another chaperone, and then left off the stands to the side (the band is always at the end of the stands). 

            Remembering an incident involving Colin during his eighth grade year, I sent Roger to check him out as discretely as possible.  The eight grade event had occurred at a pep rally when the noise had gotten to him.  He’d thrown down his backpack and accused the kids standing next to him of being mean to him for being loud, though by other accounts, they’d been yelling because it was, after all, a pep rally and were confused but not put out by his accusations:  again, their knowing him was his salvation.  Indeed, to this point, kids’ understanding that he has autism has seemed a good thing. And for the most part, I think it still is.

Roger returned after having found Colin waiting with some other band members to go the bathroom.  When I asked if Colin were okay, Rog said he’d asked and gotten a nod and a pleased enough expression from Colin.  So I thought for a while that things were all right.  But at some point further, I noticed that he was talking more and more to himself than to others.  And he was talking animatedly enough, turning his head from side to side but not making eye contact, that I was sure he was audible, though he seemed to be looking at the field too and at others a little.  But, the kids next to him weren’t listening, or they weren’t paying attention to him.  They were in fact no doubt paying even less mind to him than usual if only because of the homecoming celebration and the MUMS and RIBBONS and the celebration that infused their already energetic bodies and minds even further. 

And he wasn’t noticing.  At home, he often talks to himself, usually the loudest outside, when he’s enacting conversations between superheroes, wrestlers, or whatever else he’s been watching and not wanting feedback on from others.  It seems to be a sort of practice talking and part of his daily detox from life at school where he can’t be as expressive and get away with it. 

But I was noticing him at the game, and I was disturbed.  Again, echolalia sets him apart, reminds me not just that he’s different but that sometimes his difference doesn’t help—at least in the way his mother would like.  His behavior was more evidence of the separation between him and the neurotypical world and, implicitly, of the difficulties inherent in any sort of separation from the norm.  Watching him returned me to what fiction writer Bhahariti Mukertjee has called, in the title of one of her more widely anthologized short stories, “The Management of Grief”—which is, admittedly, better than unmanaged rending grief, the kind that shrinks you to a messy ball of weeping, snot, and teeth gnashing.  But it brought me back to that day I found him doing what is called in the autism world “perimeter walking”—but this time inside a perimeter of kids in the band hall only a week or two earlier, the Unfair Day before our game at Westgate.

This hadn’t been the first time I’d seen him perimeter walking.  In fact, Colin’s perimeter walking was one of the earliest “signs” we’d had of his autism, back when he was not yet even identified, or right around that time—that is, right as he turned three, and grew to four.  Perimeter walking is a behavior that involves repeatedly walking around the edges of a group without any sign of interest of going to the group and interacting.  I like to think of it as an autistic version of what doctors identify as parallel play in normal children.  Parallel play involves playing next to or in proximity with another child, often doing the same sort of thing, but again, not interacting with that child, and is a perfectly normal developmental stage—as long as it remain a stage and the child moves on to interactive play.  And stop it out there:  I know there are some of you, who, like me, at times think we’re still stuck in parallel play land.  If so, go see a doctor.  Try for a diagnosis.  They’re not as easy to get as you might think, and just because you have one doesn’t mean anything can be done about it (as I know from my experience, not Colin’s, too well!).

Perimeter walking was what Colin had been doing that day in the band hall after the Comal County fair parade (Unfair Day), when I’d brought him his garment back, or come in to find out if he needed one, and he’d held up that filmsy gauntlet bag.  The only variation was that since most of the kids were hanging out around their band lockers, he had to walk inside their perimeter.  But he was still going in circles, and his perimeter did not cross theirs.

Even then though, I’d known that the fact that he can walk inside the perimeter of kids at the band hall and be recognized and at least accepted and not “reviled” is in itself a victory.  But he’s also beginning to notice, as I wrote about in my last entry, that those around him are being noticed more, and more than that they are communicating and being communicated with.  And when he saw his bandmates giving high-fives to others at the contest the day after Homecoming, he’d felt left out.  And, what I’ve had to see the week since is that this is good. 

If he didn’t notice, or didn’t care, the kids in band would be nothing more than padding, the kind you find in those white rooms we see in movies in psychiatric wards.  And living in a padded room, comfy as it might be at first, should never be a goal.

But since then he has been working, and I have with him, on talking with his band “friends” and listening, and the great news is they respond, and he knows, thanks so some repeated drilling and practice, to respond in turn. And he has told me that this weekend, the weekend after homecoming and after another game and contest, that he’s had a better time in band, that it’s been “more enjoyable.” 

            But before I go into the how and why of that, here’s Colin’s version of homecoming, at last, for really and for true:

I like the fact that some of my friends were there such as Mallory, Rene’ and Chris.  I also liked that fact that the unicorns won which was good because we lost 3 games already.

I didn’t like that one of the other team members were down which took then ½ an hour to get the person up and into an ambulance.  I also didn’t like that when we got back to the NBHS band hall some wacky college woman came into the band hall and started to hug another friend of mine named gus who has orange hair, wears glasses and is shorter than I am.  In affect to that I flicked my bibbers at her in which she still said I was her friend which is more crazy!!!

I didn’t like her, and she even called gus Harry Potter!!!

If only from this interaction, I can see that we've got a lot more work than on reciprocity ahead of us in the social sphere.  But, again, it's late. So that will have to wait, like so many things, till tomorrow.