Ain’t nothin’ but a stim thing…

Thunder.  Lightning.  Not necessarily in that order, but all night long.  It isn’t any wonder that J woke up in a grumpy mood.  I admit to being grumpy too.  The flashes of lightning were close enough to be immediately followed by the rumble of thunder.  Even with the curtains closed we could see the sudden bursts of light…sleep wasn’t impossible, but it wasn’t easy either.

The day is wet and dreary.  The only plus to this is that the world has turned green and lush in short order, and J knows it’s coming up on shorts and sandals season.  The snow boots and jackets have found their spot in the garage next to the Xmas decorations.  The cotton sheets are back in rotation, and we will soon talk J out of putting the red fleece blanket on his bed when he does his Sunday morning sheet swap-out.

We understand that J is trying to make sense of the world through his random acts of, for want of a better term, self-aggression.  He was moody and irascible because the world (in flashes of lightning and rumble of thunder) came in through his closed windows and drawn curtains.  He is touchy because he senses change in the air (maybe it’s all the AAA maps, the Zillow home searches, the piles of things we are discarding or giving away forming in the garage.)

We would love for him to take up painting to express his concerns, but that’s not his way.  J’s way is to flick his chin, hit his head, and apologize profusely.

It will all wind down…eventually.  Right now he is wondering where all this subtle upheaval (yes, there is such a thing…you try to discreetly proceed through the waves of change while whistling and twirling your umbrella in your hand) is leading.  If I am to be honest, we are wondering, too.

In the meantime, we try to make life interesting.  We take our cues from him.  We accept that there will be stones in the road, pebbles in our shoes, and moments of doubt about how to handle them.  J, I think, trusts us.  I like to think he does, and I like to think that he will be as excited (albeit cautiously) about it as we are.

I confess that there are moments when life, people, surprise me.  Or, rather, when the way people see my life surprises me.  A neighbor stopped by today; we share a house-sitter/J sitter.  This is the lady who recommended J’s companion to us.  She is a nice lady.  She is about our age, obviously a little higher up on the socioeconomic slippery slope, and educated.  I like her.  I wouldn’t want to be stranded with her on a deserted island, but I like her.

The purpose of her visit was to drop off her keys so our mutual sitter could pick them up.  She is going away for a couple of weeks to supervise the refurbishing of an oceanfront property that her family owns.  I asked her in (I was still in lounge pants and not at all looking like a lady of any degree of leisure) and she sat to chat for a while.  The chat was, for the most part, about how difficult my life is.

I tried to explain how, in the great scheme of things, this situation sort of sucks sometimes, but it’s not at all bad.  J is a congenial (if prone to asshole-ish-ness) individual who isn’t as much work as one would suspect if one has never had a child with a disability.  The words “sacrifice” and “burden” came up, and I let them slide because the alternative would have been to be holier-than-thou.  I said that, when you boil it down to its essence, J is just a demanding roommate.

Dada was in “I’m hiding in the sitting room” mode.  A) He was in his pajamas, B) he didn’t feel like socializing because he was playing some computer game (per his version he was looking at job boards,) and C) he would have been drawn into this conversation and he would have, as often happens, said something he’d later regret.  (See, please, my reference to the time we visited a couple of our acquaintance -foodies of the highest order- and they were talking about “that guy from Dallas” in reference to a chef, and Dada chimed in with “Oh!  Larry Hagman????”)

He heard the exchange over the baby monitor.  When we were once more alone and I returned to the living room, he looked up at me and said “wow…burden!!!  I could hear your teeth gnashing through the floorboards.  I could also hear your face cracking from the “I’m a civilized human being” smile you had painted on your face.”  I shrugged and said “if it makes her feel better, who am I to explain that this is annoying, irritating, overwhelming, and absurd, but not really as much of a burden as refurbishing a coastal property???”

He laughed.  He gets it.  He knows that I have gone past the point of responding to that sort of condescension.  Like J’s flicking his chin or hitting his head, I know it serves some sort of purpose for the person saying the stupid thing.  It annoys me, and I wish it would stop, but I give it time to fizzle out.  J knows this, and he looks at me and slows down the behavior that is “off” and then it’s gone.  He apologizes.  That is because J understands that we cannot communicate properly if he is doing something that is counterproductive to the process.  When he has no control over his actions (that is: during a meltdown,) I have to accept that he needs help; when he is throwing a tantrum or being an asshole, I have to let it go.

This lady, in a nutshell, was being the most well-intentioned kind of asshole there is; she wanted me to know that she felt my life was framed in very unfair terms, and that she felt for me.  To correct her would have been unfair of me; she doesn’t -aside from the superficial sharing of a sitter- really know me.  She is not a bad person; she is just not working with all the data that she needs to properly assess our situation.

People sometimes talk for the same reason that J randomly hits himself.  It stimulates them; it gives them the impression that they are empathizing, that they can interact in a way that we will value.

It’s just another stim thing…annoying, unnecessary to the casual observer, but present nonetheless.


Let’s see some daylight under those feet!

Every afternoon, some time after 5 PM, a group of three or four convenes in the family room, and a lot of heavy breathing takes place in front of the TV.  Thankfully, the Wii is on at that time or we would all seem rather strange to others who walk by the sliding glass doors.  That J is happily bouncing next to us is quite comforting…that means we are on our way to improving his health through exercise.  There isn’t as much breathlessness when we walk home from school, but we have a ways to go still.

The measuring cups seem to be finding their niche.  J, of course, tries to sneak around and serve himself without anyone knowing he’s overdoing it, but our keen sense of hearing (and the fact that we know J pretty well and can anticipate some of his craftier moves) has allowed us to intervene.  Yesterday Dada bounded up the stairs as soon as the first cinnamon toast crunch hit the melamine bowl, made J put the cereal back in the box and then had him measure a cup.  There was some indignation in J’s reaction, but he went along with the process.  Suffice it to say he will now work on being noiseless…

The school routine has been happily re-established.  J is up early and not even make the slightest effort to pretend like he’s displeased with getting up, getting dressed and getting going. He now starts dancing around upstairs as soon as he realizes it’s a school day.  The bus drivers tell me he starts smiling as soon as they reach the crest of the hill that leads to our neighborhood’s driveway.  This is a very comforting thought; he has fun at school and is fine with coming home and being with me…just not for prolonged periods of time!

This weekend I expect to have J walking up and down the slope in the back of the townhouse.  I am hoping to get him into a groove of “outdoor time” even when the weather falls short of perfection.  Sometimes this takes making him realize how much he truly enjoys doing those things…because he DOES, he just likes to forget that he giggles and bounces around when he’s outdoors.  The bed, the couch, the rocking chair…yes, they’re all comfortable and one would rather be there, but I want him to realize that he likes to rest because he’s done something, not just because that’s all he likes to do.

Today is Three Kings’ Day and we have our little typical meal to celebrate.  Of course, since we are in a location that doesn’t exactly cater to this celebration, we adapt to the things that surround us.  Gone are the days of trekking outside to look for “camel food” to place in a shoe box.  Gone are the days of early morning gift-giving (humble though it was because the Three Kings had a very tight post-Santa Claus budget) and now we move it to a morning when everyone will be here at the same time, even if the timeframe is very small.  We will eat our pork and rice with pigeon peas and, since we don’t have access to the pasteles that are accustomed during the holiday season in Puerto Rico, we will substitute with tamales.  These are the moments when any approximation of “the way they do it at home” seems acceptable.

We don’t make a big to-do about Three Kings’ because we don’t want the neighbors to think we’re odd.  Yes, I typed that with a deadpan face…the lady whose kid walks around with the boxing gloves, the Slinky, the Rasta hat, etc., etc. doesn’t want to seem odd to the neighbors.  I confess to you that I am starting to feel rather normal among them.  Yesterday my neighbor had a flat tire and came over, seeking assistance.  Out I went and helped her.  It was bitter cold, I’ll have you know, but we managed to change that tire.  Three (count ’em: THREE) male neighbors drove by and not a one stopped to ask if we needed help.  My neighbor laughed when I told her “back home twenty people would’ve stopped; three would’ve changed the tire, one would’ve gone to find you a sandwich and a cup of coffee, two would’ve offered you a lift, another would’ve cleaned your windshield and the rest would’ve assessed any other work your car needed done, if the weather was going to hold for the rest of the week, if the stock market would improve.  You’d have made 20 friends over one flat tire.”  It sounds hyperbolic, but it’s true.  When my son arrived and helped us finish, we told him “three men drove or walked by and didn’t offer to help,” and he shrugged while shaking his head and muttering “there are no gentlemen left.”  My husband’s reaction, when I told him about it last night, was somewhat similar.

I always think of Mother Teresa.  She said that whole thing about: “I want you to be concerned about your next door neighbor. Do you know your next door neighbor?”  I try to do that.  When I meet my neighbor and say “if you need anything, let me know,” I actually mean it.  I think my neighbor realized this yesterday as I did my best to help her even though it was cold outside.  I was surprised when she hugged me.  I don’t know if she’ll talk to me again or how often, but I felt comforted that I managed to prove that I mean what I say (like Horton the Elephant.)

As we walked back from the bus yesterday afternoon, I carefully guided J through patches of snow and ice.  The stairs were pretty clear, but a slip would not have been surprising under the circumstances.  I was grabbing his jacket tightly while reminding him to hold the railing and to watch where he set his foot down.  We got home in one piece, with a minor slip that -thankfully- was not one of those that you feel ten hours later in your lower back because, by overcorrecting, you pulled a muscle.  We walked between the rows of townhouses and we didn’t see anyone at a window or by a door.  The cars that drove past us didn’t contain a wave or a smile or even a nod of recognition.  If J slips and falls, I thought to myself, I will be on my own helping him -all 250 scared-stiff pounds of him- get up.

We need to make him a little lighter.  We need to make him a little more sprightly.  We need to make him a little more agile and capable of breaking a fall correctly.  I only know one next-door neighbor.  There are 80 families living here, and I don’t know how many of them will consider stopping to help if we need it…

That is pretty friggin’ scary…