The way things are…

J is a stubborn individual.  This can work for or against us.  On a day when he is inclined to collaborate with us, we can make great strides.  On a day when he is unwilling to negotiate even the smallest thing, we can all end up frustrated.  Autism is, obviously, one of the issues we’re dealing with here, but Adolescence (capitalized because even in its garden-variety form it is a force to be reckoned with) is also very much front-and-center.  The developmental delays that come with this territory we’ve claimed, colonized and have yet to (fully) understand give us an 18 year-old body with a sliding-scale of maturity that is hard to predict.  The kid who somewhat maturely accepts today that Slinky cannot be held while he’s eating could possibly throw a nuclear-meltdown tantrum tomorrow when the same thing is brought to his attention.

Less than two weeks from today we’ll be going back to the doctor to give him an update on how J’s doing.  Looking back, we know we’re on a see-saw…one day we’re up, another day we’re down, then up and possibly in the air…flying off the thing and landing on our heads on the floor.  That is the nature of this process, but we can’t seem to find a way to be completely negative about it.  Let’s say we’re “guarded” and “optimistic,” shall we?

I firmly believe (and J’s teacher seems to agree) that J is very much acting like a teenager.  Aside from the one ridiculously harmful instance which we’ve yet to get a full report on (don’t worry, I’m sending a note tomorrow so that I can get a proper answer before I go to the psych with J on the 4th,) J seems to be doing OK, but he is…most definitely…MOODY.  That’s the word that comes to mind.  Even when I try to think of it in a dispassionate, clinical, “this could be really bad” way: J is moody.  J is impatient with us.  J feels about us the way we often felt about our parents and other grownups when we  were in a similar developmental stage in life.

I will be honest with you: J’s occasional outburst of SIB would worry me more if they took place in private, if we weren’t there to witness them.  When something like this happens in front of adults who care and want to help, J is -to my mind- seeking attention and asking for something he cannot quite express otherwise.  If, after putting him to bed and going to sleep, I came into his room to find that he has hurt himself when no one was around, I’d freak out…I’d take it as a very, very, very, very bad sign.  This has never happened.

Mind you, J does gnaw at his cuticles, and has been known to chew his fingernails.  If something itches, he will scratch almost obsessively, but these are things that I can work with.  Once a week I spend time checking his nails, making sure that nothing will snag on anything when he uses his hands.  I also check for patches of dry skin that might bother him, and for any spots where clothes might be rubbing the wrong way (I am a firm believer that taking labels off of clothes as been the greatest improvement in the garment industry.)  I check his ears and nose.  I check his scalp.  I make sure that if something might bother him in those departments, we can catch it as soon as possible.  Why?  Because J can be as obsessive about things as any other autistic individual, and because his threshold for pain is one of the most confounding things about him.  The kid who could be bleeding and won’t so much as peep will scream his head off if the plastic thread that used to hold a price tag on a piece of clothing jabs him slightly.

These are things that only “we” understand.  The people who directly deal with autistic individuals on a day to day basis…”we.”  Unlike Fred and Barney, we don’t get the funny hat, but we do seem to have a handless secret-handshake, a lingo all our own.  UnknownWhen J’s teacher calls me, I know we’re going to synchronize our watches, hop on the same frequency, insert the matching keys and enter the matching codes, use the decoder ring we found in the box of Cracker Jacks that is J.  This week, through phone calls and text messages, notes and cryptic communications, we’ve figured out a few things, and we’ve set up a two-front battle plan.  J is, as it were, surrounded by strategy and our battle plan is so well-coordinated that he has decided to go along with it for the time being.

Or, maybe, he is going along because he finds that our synchronized routine fits into his needs.  Whatever it is that J thinks about this, it’s working for the best at this time.  There are now four “Slinky parks here” wood blocks in different areas of the house; when J is working or eating or showering, Slinky sits on one of the blocks.  The same thing is happening at school.  Before we would just let him put Slinky on the table or the countertop, but now we’ve realized that -because his boxing gloves are gone and Slinky has been his beloved constant companion since February- J gets anxious when he loses sight of it.  So Slinky has a resting place…like the cat and the basket.  J feels comfortable with Zelda because he knows Zelda will be parked in the red plastic basket she has in front of every set of sliding glass doors.  From all this we’ve learned that J can now pronounce the word Slinky so clearly as to make us think someone else has been saying it for him…yes, his enunciation is THAT perfect.  That letter S comes out so crystal clear that I almost cry when I hear it…it’s a beautiful sound.

We’re back to timing No-Hats Time, and encouraging Hatlessness.  Perhaps it is another one of those adolescent things, or perhaps it’s a result of ESY not having removed the hats promptly enough, but J has been trying to keep his hats on at school and surrendering them only grudgingly when reminded of the No Hats Rule.

With Slinky he is a four year-old who misses his blanky; with the hats, he’s a ten year-old complaining about not being able to his favorite ratty t-shirt to church on Sunday.

Are we ganging up on J?  Maybe.  Maybe that’s what it is, but we’d rather think of it as collaboration, as helpful-to-J collaboration.  As long as he reacts where we can see him, and we can intervene  as gently as possible to help him through whatever frustration he’s feeling, I think we’re all doing fine.  I like things the way they are…the openness of it.  I worry that someday J might not want to share with us the things that bother him, and -while I confess that it’s heart-wrenching to see him upset when it escalates- I wouldn’t trade being there and aware for anything.  You see so many kids who, in hindsight, were suffering and didn’t get the attention they needed, whose parents voices were not louder than the voices of their fears and frustrations, of their detractors that I’d really rather deal with KNOWING that there’s something to address than not…

Funny hat is optional, but communication is essential.





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