Autism isn’t easy…

I hear Barbra Streisand’s voice in my head, and Sondheim’s lyrics are altered by my personal experience (be patient with me, please)

Bit by bit, holding it together
Piece by piece, only way to make a day work
Every moment makes a contribution
Every little detail plays a parts
Having just a vision’s no solution
Everything depends on execution
Holding it together, that’s what counts!
Ounce by ounce, holding it together
Small amounts, adding up to make a day that flows
First of all you need a cup of coffee
Otherwise it’s risky from the start
Takes a little candid conversation
But without the proper preparation
Having just an idea’s no solution
Everything depends on execution
The art of dealing with Autism
Is holding it together, bit by bit…

Yes, this is what I hear in my head.  And, yes, Babs is singing it…with a group of therapists, aides and teachers interjecting comments throughout her performance.  I was sitting in bed when the phone rang, I saw it was J’s teacher and Babs took over.  She’s been playing in a loop all day…

Apparently J tried to hit his head against a wall and a cabinet this morning.  As you can imagine, the acid reflux is threatening to drown Babs’ voice.

Link by link, making the connections, yes we do!
Step by step, taking behavior clues as they come
Trying to figure out what’s going on
that wasn’t going on before 
Otherwise you’ll find your intervention
Isn’t gonna get the kid’s attention
Autism isn’t easy
Every minor detail could become a trigger
Have to use the right PECS
reinforce good decisions

The analysis of what happened on the day that J hit his head against a wall while being supervised by another teacher in another classroom is still incomplete.  Apparently, like something out of a plane crash investigation, the black box made up by staff has yet to be interviewed in its totality.  One person hasn’t yet spoken to the principal.  In the meantime, we wait, and we hear reports like we the one we got this morning.  Like the worriers that we are, we start trying to piece things together…and we realize that we have basically shards and splinters to go on.  Y-ay us!!!

Dot by dot, gathering information
bump by bump, keeping ice bags handy
Still if you remember your objective
you won’t try to bribe him with candy
A little bit of grumpy can be effective
As long as you can keep it in perspective
Even when he gives you a response
Everything you try is just a fluke

So J walks in with a new bump on his forehead this afternoon and it seems this is his new “thing.”  I ask and he deflects (NOT a new thing, but a thing nonetheless,) and I have to use my “stern” voice.  We immediately go into a repetitious loop of NOODLES and SODA.  I’m not buying it, and J knows it; I take out the iPad and ask him why he hit his head.  I DON’T FEEL WELL he says with his Proloquo2Go, but I know it’s just because that particular picture has a bag of ice in it.  So he’s basically not wanting to answer me…on the rocks.

Autism isn’t easy
Overnight you succeed
Use the right combination
Then success fizzles out
by arrested communication!

I go back to the Proloquo and ask him how he feels, taking out of the rotation the bag of ice: FEEL HAPPY.  That’s when I say HORSE SHIT! rather loudly and J announces that he’s going to change his clothes and look for his movies in his room.

All he ever says repetition
like he means “well, you already know!”
Gotta keep eye contact with this person
Gotta not give in to your frustration
While you re-assess your position

With a sigh I let him go, and I try to talk myself into believing I can figure this out.  It’s got to be at school, I tell myself.  He hasn’t done a thing like that here, I tell myself.  The stressors at home are new, yes, but I can work with those, I tell myself.  I go over all I did since the phone rang and I realize that I’ve re-arranged J’s two rooms so that they’re the same yet different.  The books are now closer to where I sit to read with him, and he can see them better.  The movies are easily reached from the spot where he sits.  The two work tables are side by side, and all his materials are at hand…
Bit by bit, keeping it together
Piece by piece, working on the vision night and day
All it takes is time and perseverance
With a little luck along the way

Oh, Babs…you and I know that this is me having a breakdown over how we’ve taken a step back that I want to desperately turn into a step sideways.  This bad lifelong habit of mine of trying to make my life a musical (a Sondheim musical, no less) is not very productive right now.  J’s sudden inscrutability, as I explained to his teacher this morning, can only be the result of several things:

a) he’s developed that annoying pubescent male habit of thinking that girls have cooties and, ergo, there is no need to listen to them, much less acquiesce to whatever they ask you to do…

b) he’s responding to the altered schedule at home because Dada is working so much that life, for J, has turned dull and colorless in comparison to those now seemingly distant weekends when we did “fun” things like go grocery shopping…

c) this is his version of PMS…

d) he got to the bus late this morning and that threw him off…

e) he’s bored…

or, and most likely,

f) he threw a tantrum a few days ago, banged his head against something and it resulted in some sort of reaction that gave him pleasure at the time, and now he wants to repeat it until he gets the same result…

Take it away, Barbra…

Mapping out the facts but in addition
strategizing each negotiation
Balancing the part that’s all parental
With the part that’s strictly educational
Balancing the love with the mission
Till you have the perfect combination
Even if you do have the suspicion
That it’s taking all your concentration
The minefield of Autism
Is keeping it together, bit by bit
Beat by beat, part by part
Sheet by sheet, chart by chart
Track by track, bit by bit,
Reel by reel, pout by pout
Stack by stack, snit by snit,
meal by meal, shout by shout
Deal by deal, spat by spat
Shpiel by shpiel, doubt by doubt
And that…
Is the story of my life!!!!!!!
Thanks for paying attention to my madness…here’s the actual Barbra Streisand version which, by the way, I absolutely adore…

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And merrily we arrive at Friday…

Fall is moving along at a nice pace.  The weather has been clear and sunny during the day, and the evenings are slowly becoming crisper.  The garage has been properly insulated so that we can use the Wii in there, and our pantry and freezer are -thankfully- fully stocked.  Should winter arrive prematurely, we will be ready to face the possibility of being stuck at home, and -if all goes as planned- I won’t have to brave the crowded stores when “grocery shopping season” begins in earnest.

J went to the Buckwheat Festival with his classmates today.  He left early this morning, armed with money for lunch and rides, and happy as happy can be.  Over the past few days I sent Autumn and Halloween stuff that we don’t really need anymore, and they have done up their classroom in a very festive style.  They’ve also made cakes, and they’ve had a grand old time enjoying the change of season and the upcoming celebratory mood that seems to crawl into all of us as the end of the year approaches.  This year we’ve decided to concentrate all of our enthusiasm for Thanksgiving and Christmas because we have a lot to be grateful for, and because Dada will have a bit of vacation by the end of the year, and -hopefully- by then he will be more able to relax…hopefully…fingers crossed…

This whole “getting ready for cold weather” has been left up to me.  I’ve always been the go-to person for all things household related, but now everyone else is really too busy to pitch in, so I find myself (as I’m prone to do) making lists, measuring things, counting supplies, coming up with solutions with very little input from the population I serve.  The menus are left up to me, and even though I post them everyone seems to be surprised by whatever they find served for them at mealtimes.  They have hardly noticed that the A/C has been off for days, and that the heat has yet to be turned on, but cups of tea, hot chocolate or coffee turn up in front of them with cookies or bread while they study or work at their desks.  J happily helps me when he’s in the mood, but he, too, has taken to cocooning in his room and asking for my company when he wants a book or when he feels like a cuddle.  The rest of the time I am kept busy by other things around here, and it almost would seem like we are a regular, run-of-the-mill, garden variety household if we didn’t have J’s hats and his bouncy gait as we walk home from the bus to give us away.

Tuesday is Switch to Long Pants Day, and I’m going to prepare J for it by showing him the weather forecast and taking out all the autumn-related PECS.  When they were little, the kids used to love watching Winnie the Pooh and the Blustery Day, and we still The Rain Rain Rain Came Down Down Down and A Rather Blustery Day when the weather calls for vigorous singing to stave off the sad feeling that autumn can sometimes bring.  J enjoys a rousing chorus of anything that involves a silly dance with all of us so, as you might have guessed, we do this quite often.  TGG, by the way, does a fantastic version of Zuckerman’s Famous Pig from Charlotte’s Web.  E.B. White was none too pleased with the singing in this particular version of his book, but it makes J giggle so much that I cannot fault the decision to feature Sherman Brothers’ songs in it…especially if you consider that we’ve caught J dancing around while he’s filling his snack box and that gives us a chance to sing A Veritable Smorgasbord, which makes him laugh even more.  No one, mind you, wants to be Templeton the Rat, but he is endearing when he’s going crazy at the fair…

So that’s it!  We’re ready…or quite close to it.  We’ve found a certain groove and, until things settle down at Dada’s work, we’ll be on it…and TGG is almost done with school and getting ready for his six-week externship.  He’s chosen a location close to home, and they will be observing him closely to see if he’s suitable for hiring when it’s over.  We all have our fingers crossed and are hoping that what’s left of 2013 works out nicely.  We’re looking for things to slow down a little bit…not a lot…just enough that we can catch a break.

As for J: he is doing well.  He hasn’t really had any behavioral issues at home, and he’s been managing himself quite well at school once he is asked to focus on communicating his needs.  If all goes according to planned and we have no sudden and catastrophic disruptions, we should be able to lower the Risperidone’s dosage one more time before the end of the year.  I think we can pull this off (I’ve talked myself into thinking we can pull this off,) and I’m confident that we WILL pull it off (as in I’ve talked myself into being confident that we can pull this off.)

The note in the comm book is encouraging: J had a fantastic time, and even rode the carousel in spite of initial misgivings about the endeavor.  He ate pizza.  His cheeks are rosy.  He is beaming with joy.  How can I not be confident that we can deal with another med reduction????  Well, easily…I tend to overanalyze things and fret about them even when I claim to not be doing that.  But, yes, today it all seems possible in the best way, and I’m going with that because the trees are changing color, the air is crisp with the promise of another year in the books, and we’ve done a lot to move forward (and some to move sideways) in 2013…right???

And that’s where we’re at on this Friday in late September…the last Friday in September…

sigh…it’s going quite fast, isn’t it???

Watching and waiting…can be pretty boring business

Look, I am not saying I’m not prone to unnecessary panic, but you have to admit that the unexplained bump on the head, the reports that J voluntarily and angrily banged his forehead against the wall, and the history of self-injury we’ve endured would make one…well…antsy.

So far, and -believe me- we’ve been very dedicated, we have seen NOTHING to indicate to us that J might be having behavioral issues again.  He seemed tired and bored on Friday evening, but with the gloomy weather and the change in seasons, I can’t help but wonder if -perhaps?- there’s some affective symbiosis at play here.  Instead of taking the tack that J might get angry and coddling him to prevent this, we decided to go along the normal course of action: NO means NO, there are only so many snacks in one day, and chores have to be completed.  We’ve faced a normal degree of resistance and protest on all counts…nothing to indicate that we might need to run back to the psychiatrist asking for help or medication.

I still don’t have any concrete answers from the school.  I still don’t know exactly what happened.  There isn’t, after all, any equivalent of a  Zapruder film that we can dissect frame-by-frame to determine what happened.  All we have, IF we have them at all, are eyewitness accounts, and they all seem pretty subjective to us.  In essence, the only ones agonizing about this incident are the parents of the person who came home with a bump on the head…and, acid reflux notwithstanding, no one seems to be rushing to clarify the events to us.

We are, in spite of our confidence in all the effort J has made, and all the progress he has achieved, alert to any changes and shifts in his mood or demeanor.  We can’t help it…we’re parents, for crying out loud!  We are doing our best to stay calm, cool and collected so that J doesn’t notice how anxious we are about the veil of mystery and confusion surrounding this incident.  We are hoping that, at one point sooner rather than later, someone will say “oh, by the way, from all that we have heard from all sources, THIS is what happened…”

In the meantime, we sit here and wait, calmly and observantly, until we figure out if J needs something more than what he’s getting (which is always a possibility, of course,) or if this was simply an isolated incident of anxiety triggered by a passing flicker of something.  Maybe, as I’ve pondered before, it was just gas…

The weekend was, predictably, part busy, part entertaining, part exhausting, part too short…  Dada is still working quite a bit, but has realized that he needs to slow down when we ask him to because we only ask him when he seems overwhelmed.  This has worked rather well…  We’re all trying to help each other figure out where to relieve the pressure when it’s getting to be too much.  That some of the pressure comes from unfamiliar stressors (like Dada’s sudden foray into workaholic behavior) and that others come from familiar stressors (like the fear of J relapsing into major behavioral issues makes this task daunting at times.  No one wants to see the balance of hearth and home shaken to the point where it’s all unrecognizable, or recognizable for all the wrong reasons…

We wait, then.  One eye is focused on the thing we are doing while the other eye is focused on what goes on around us.  In an effort to keep J occupied, yesterday I had him and TGG help assemble our lasagna for dinner.  One thing can be said for J (and this made him the future go-to guy for lasagna nights): he is generous with cheese.  There was artistry in how he layered the provolone, sprinkled the mozzarella and dispersed the ricotta-parmesan mix.  The general consensus is that I am no longer in charge of cheese-layering for anything.  J was very proud of this, especially since we made some lasagna rolls stuffed with cheese and without the meat sauce for him to have for dinner.  (Ground beef has become something he’d only eat if forced, and then he’ll spit it out forcefully…which tells me he really, REALLY doesn’t like it.)

Every afternoon we’re running together, doing chores; in the evenings we read books, look at picture books, and hang out.  Dada and TGG have promised that they are going to work on doing more of this when their schedules allow.  For the time being, I’m the main provider of entertainment and projects for J to get engaged in, and I find that I have to get very creative sometimes.  I have to make sure, in doing this, that I don’t go overboard and overcompensate because of whatever concerns I might have about J at any given time.  I don’t want to be so chirpy that he actually starts to wonder if there IS something wrong.

So, it’s a waiting game.  We wait for news from the school about the incident that is looming over us like the sword of Damocles; we wait for a sign from J that tells us if it’s an isolated incident or if we need to address changes in his behavior; we wait like the silly, overanxious people that we obviously are…

An answer from the school would go a long way to help us get over the part where we don’t know what to think…

I’m sure Jane Goodall’s observations result in more data than what we’re getting here, but…that’s the way it goes, isn’t it?

 

Still more questions than answers…

Well, the My Kid Got Hurt And Nobody Called Me Manifesto landed firmly on an administrator’s desk and I got a call yesterday afternoon.  Shocked!  Shocked and appalled, they tell me…and rightly so, I told them.  THIS had never been the way we do things with the school and now, NOW, when J is going through a reduction in his med and it is IMPERATIVE that we know about things like this…

I’ll be candid with you, as I was with them: the thought that J might have had a meltdown, and in the process of hurting himself he could have hurt another person horrifies me.  I don’t want J to hit his head (with his hands, against the wall, in any way,) but I don’t want him to hurt anyone else, whether intentionally or not.

That is what I told the principal and vice-principal: of course I worry about J, but this is for their own good, too.  What if J’s not doing so well with the reduced medication?  What if there’s something in that particular classroom that upset him beyond what is manageable?  What if…what if…what if…  I can’t do anything if I don’t know anything.

All the worries I had intentionally set aside so they wouldn’t interfere with the Here and Now, rather than with the Back Then When Things Were Pretty Horrible, have come tumbling back into my mind, sort of like The Three Stooges slapping and poking at each other.  I’d like to send my concerns packing, but I’ve been witness to J’s blindness during a fit of anger before.

J seems calm enough at home, but -then again- at home he isn’t competing for attention with a dozen other kids.  At home we don’t take crap from him, but we also know how to tell him why, and our attention isn’t being -justifiably- pulled in every other direction.  We also understand, at home, that J is very much in tune with our interactions…if we are angry at each other, if someone is worried or anxious, J picks up on it and reacts accordingly.  We make sure he is aware that, while we are upset or worried, we’re fine, and we care that he cares.  It’s not that we don’t argue or disagree, but when we do and J hears it, we immediately make sure that he understands this is a passing thing, that we’ll all be fine but simply need to hash something out.  (One advantage that comes from this is that, in explaining it to J, we often end up explaining it to each other, and it sort of diffuses the whole thing, making it easier to not be upset about things anymore.)

A school is like any other workplace; frictions can arise between people who work together constantly.  I have no way of knowing if, perhaps, two people in that room were having a verbal disagreement (sotto voce, of course,) and J picked it up with his hypersensitive hearing.  By the way, I remember the days of The Bionic Woman and how I thought it would be so cool to be able to hear things as clearly as she did with her bionic ear.  As with Harry Potter’s invisibility cloak, I now think this is an overrated advantage.  If people were speaking to each other in a tone that was tense, J might have reacted to that.  Rumor has it he was “working in a group.”  If this is something he didn’t want to do and his way of expressing discontent was to hit his head against a wall, that’s unacceptable and we need to deal with it.  But, again, I go back to the last time J intentionally aimed for a wall with his forehead and what comes to mind is desperation, helplessness, utter and complete frustration.  J will wail and slap his hands, bump his head with his fists, but going for a wall is an extreme move that -to my mind- indicates extreme conditions…

Is it because of the med?  Are we, once more, treading into psychotic episode territory?  This is eating me up inside.  I am worried to the point where I am ready to call the psychiatrist for an evaluation if I don’t get a straight answer about what transpired the other day.  I explained quite clearly, I hope, to the people I spoke to yesterday that this is not about blame, but rather about why they didn’t report to me an incident that might have other implications of great importance.  Does that make sense?  Does it make sense that I need to know, and that if it was that they were bickering, or they were impatient, or he had gas he couldn’t pass, or he wanted something they rightfully said NO to, I still need to know???

So I write this while my brain is dancing around frantically, trying to figure out WHY they wouldn’t call me.  My stomach is in knots.  If J’s having a slide back into some sort of darkness, well, we’ll hopefully have the backbone to deal with it…there’s no alternative because we’re in and we’re committed.

Hopefully it was just gas…

Is that a bump on your forehead, or are you just happy to see me???

The bus’s horn was honking as it pulled up.  Not a good sign.  I walked towards it as quickly as I dare walk in slopes.  The bus aide was emerging with her hand extended to guide J.  “Did you get a call about him hitting his head?  (I shook my head as I bounced the last few steps between us.)  He hit his head!  So-and-so said he hit his head….coming out of the bathroom? (The question mark floating at the end of this made me nervous.)  He’s been holding it all the way home.   (As if on cue, J stepped out and, while one hand covered the forehead, the other grabbed mine and led it to the bump.  The words Oh, holy crap! formed in my brain.)  There might be a note???  (Again with the question mark.)”  I took J by the arm and steered him to the side of the driveway so I could look at the goose-egg that protruded from his forehead.

Walking and searching his backpack was the next course of action, all while calmly hyperventilating (yes, there IS such a thing, thank you.) Nothing.  Not a note, not a scrap of paper, not a “call me maybe.”  While imbuing J with a sense of calm I was not feeling, I steered our steps towards home and handed him the keys so he could, as he usually does, open the door and follow the daily routine.

Once inside, I simultaneously took out his iPad, turned it on, texted his teacher, grabbed a ziploc bag, filled it with ice, handed it to J, checked for phone messages and inspected the large, soft, angry red lump in the middle of his forehead.  IN THE MIDDLE OF HIS FOREHEAD!  J usually hits himself one the sides, where his fists naturally fall…  I ran to the phone, found the number for one of his aides, and dialed…

She answered, and I said “hi, Mindy (that’s not really her name, but it’s the first thing I thought to type.)  This is J’s mom!”  Oh, yes, she said…I’m at the salon. I just sat down.  I’m having my hair done.  I can’t talk right now.  (You’re kidding, right?  I don’t care!  I sound distressed.  Can’t you hear that I sound distressed????)  “Um, were you at school today?”  She sounded so blasé about it that I figured maybe she’d taken a day off.  I mean, really, a parent of a child who was sent home with a lump and no note calls and you react like that so it has to be that you know nothing about it.  Now I felt like an idiot…  Yes.  I’m at the salon.  I just sat down.  I’m having my hair done.  The next thing that came to mind was really you’re fucking kidding me, aren’t you, but instead I said “all I need to know is how this bump happened?  Did he fall?  Did he trip?  Did he have a seizure?  Did he faint?  Did he hit himself?  Oh, he hit himself.  I have to go.  I really just sat down and I’m having my hair done.  I’ll try to call you later.

Click.

“What happened, J???  Why did you hit yourself?  In the middle of your forehead????”  J looked at me, ziploc bag firmly pressed against the bump, and said THANK YOU.  “No, THANK YOU will not do!”  I got the iPad and went to the Proloquo2Go.  GOOD MORNING.   “No, GOOD MORNING’s not going to cut it either.”  I DON’T FEEL WELL.  “Ok, that’s more like it…let’s check you.”  His temp was running a little high, his throat looked a little irritated, he looked tired, but otherwise he was fine so, no, no excuse for hitting himself in the middle of the forehead.  I took a picture of his bump (his huge, red, angry-looking bump) and sent his teacher another text message explaining that I needed to know what had happened or I wouldn’t be able to address this properly.  I also said “there are better ways of responding to a concerned parent than blowing them off because you’re at the salon.”

Within ten minutes she called me, and was tremendously apologetic for not calling sooner.  Another parent, apparently, had got to her first.

J had been in the classroom next door, as scheduled, and she couldn’t get a straight story on how the bump came to be.  The way she heard it was “two aides, one walked away, then the other, then he hit himself, then the teacher in charge said, but I don’t have a copy of the BIP so I didn’t know what to do…”

I lost it.  I admit I lost it.  I prefaced losing it with “this is not about you so I apologize for the rant,” and then I lost it.   When I was done (and some of it, sadly, was a little profane) she agreed with me and suggested that I write a note and send it to the administration.  And I did…

It was four pages long.

I felt like Helen Hunt in As Good As It Gets when she’s writing her rambling letter of gratitude to Jack Nicholson.

This was it, in a nutshell:

There is no excuse for not letting me know what happened.  The argument that you didn’t have a piece of paper with the BIP on it is not acceptable.  I need a clarification of events so that I can help J work through whatever caused this, whether its behavioral, medical or happenstance.  That I have been left trying to extract information from an individual whose ability to communicate is severely impaired by his disability is atrocious and disappointing.  I expect an explanation.

Imagine, please, the Tolstoy-like curlicues that took up four pages to say that nutshell.  It was epic.  I’m sure I’m going from “nice Mrs. J’s mom who is so cool” to “that horrible bitch” in one fell swoop.  I don’t care.

I care even less since, while talking to J’s teacher this morning…she was telling me it has now come out that J banged his head against the wall during a tantrum.  BANGED HIS HEAD AGAINST A WALL!  He hadn’t really done that in years; he hasn’t really done that since he’s been on the Risperidone!  This gets worse and worse, doesn’t it???  How can you NOT know how to intervene with that????  Luckily he was wearing his hats when it happened.  I was beside myself, wondering how you can not know that this is HUGE!!!!

And then… I overheard her having a brief conversation with the so-and-so (a name that I couldn’t remember yesterday, but that wasn’t any of the names of staff that I know,) and told her “THAT is the person who told the bus aide that he’d been hurt!!!!”

It was, you see, a STUDENT who told the bus aide who then told me…

Do you now see where I’m coming from with this?????

 

And the word of the day is…

This post, ladies and gentlemen, is brought to you by COFFEE…reportedly assisting in making parents seem alert since circa the 15th century.

One of the things we love about the layout in the top floor of our new home is that there is a switch for the hallway light by the master bedroom’s entrance.  That is: we LOVED this until this morning when (shortly before 5) our doorway was simultaneously lit and darkened by the shape of J jolting us out of sleep with light and a lustily, loudly and beautifully enunciated COFFEE???

Whenever I fear that my reflexes are not what they used to be, J finds the need to test them in this way.  I bolted upright on the bed with a “holy crap!” that melded nicely with Dada’s “what the heck????”  In unison, and with the same perfection of the Vienna Boys’ Choir, we said “GO BACK TO BED!”  No sooner had we slumped back to bed in the blessed darkness that, once more, the rather loud voice of our youngest called out (from the darkened doorway because, of course, the one thing that was wrong about the previous approach was the light, right????) COFFEE???

If we were as synced in movement as we are in saying NO, we could be Olympic contenders in Figure Skating.  J backed away, and Dada (who had been doing a rather impressive job of actually sleeping and relaxing until then) went to take his shower.  I rolled over and decided to wait five minutes until I climbed out of bed.  As I was about to sink into sleep once more COFFEE??? rang through the room, jolting me out of bed and propelling me, in the wake of a clearly suddenly-aware-of-how-much-he’d-startled-me J.  We sat on his bed, and I explained that we don’t get up until the alarm goes off, and that it is courteous to wait until said time to come looking for us unless it’s an emergency.

J was unimpressed with my speech.  He didn’t particularly care that I told him it was rude to turn on the light, speak very loudly, and not check if the time was appropriate to come asking if we wanted coffee.  He took his iPad and, deftly moving his fingers, got to the page where he says I WANT TO PREPARE MY SNACK BOX.  By this time, I was ready for coffee, and Dada was making his way to us down the hallway.  He looked slightly refreshed but still tired, and clean.  I, on the other hand, looked like I’d just been jarred out of sleep by a kid who, in another lifetime, could have been heard over the booming of cannons during a sea battle.

This is what happened last night: J fell asleep on his bean bag immediately after he took his shower.  He snuggled up under his blanket and was out like a light.  We could still hear Adele plaintively asking if she should just keep Chasing Pavements, so we assumed he was awake…by the time we realized that we had moved on from Adele all the way to Mumford and Sons, J had been asleep long enough to make persuading him to go to his actual bed a tricky proposition.  By then it was 10:15 so J had been asleep for about 45 minutes, and his official “strike the tent down, I’m going to bed” time was still fifteen minutes away.  Hence the “up before 5 a.m. and rarin’ to go” sunny disposition.

That J went to bed early, and that I said “relax DAMMIT!” with enough conviction to persuade Dada to just go to sleep as early as possible meant that he was finally relaxed and, also, out like a light.  Jarred out of deep sleep by a light and J’s booming voice didn’t really damper his spirits; he left early to take the car back to the shop (where it had the good manners of making the loud squeak as it was driven in by a mechanic) and then heading back to work.

Fueled by caffeine (did I mention I’d had coffee early?,) I’ve cleaned the kitchen level, started on the bathrooms, cleaned the litter box, washed my hands thoroughly even though I always wear disposable nitrile gloves for this task, started some bread that is currently rising, and so forth.  My big project for today is finding a way (PECS, Velcro, a mousetrap come to mind) to keep J from leaving his room before it’s civil to do so )except in an emergency, of course.)

It has been suggested in the past that we lock our bedroom door.  That’s an awesome idea, but J is like Raffles, the gentleman thief…the one who can open any door if what he wants is on the other side.  Also, J can knock on the door, I’ve been told…by those who haven’t J knocking on a door.  (TGG says he should hire out to police, he sounds THAT ominous!  TGG’s argument is that J can knock, and someone else can say “THIS IS THE POLICE!  WE HAVE YOU SURROUNDED!!!”)  I am going for a more subtle approach, something that shows J the right time to (in non-emergencies) approach his parents in the early morning hours (with a difference clearly delineated between weekday and weekend/holiday hours,) when to ask to go to the store, and so forth.  In other words: I am going to further delve into teaching J some of the social finesse that Autism robs from him.

Hey, on the plus side, Dada was willing to chill out last night, and some of the tension on his shoulders started going away as we puttered around the kitchen getting a salad and pizza ready for dinner.  By the time he sat down to work, at around 7:30, he was visibly calm, and didn’t seem like the fate of the Free World was riding on his shoulders (because it isn’t, as he whispered to me when he started typing in username and password for the database.)

That’s the status…that’s the haps…now I need more COFFEE???? or I won’t make it to noon without walking into a wall…

 

On the plus-side, we are not any of the people in Breaking Bad…

In the nearly-fourteen years we’ve been married, Dada has been the guy who gets home from work and is home.  He will tell you how his day went, what he’s got on tap for the next day, mention whatever project looms in the near future, and let it go…

I will now switch to the past tense: that’s the way he WAS.  Now, suddenly (and justifiably,) at the age of 51 he is the guy who is ALWAYS working.  Mind you, I say justifiably because the project they’re working on is pretty friggin’ important, and I understand this, and I’ve been trying to do my darned best to be an asset and not a liability.

This is the way the week is going lately: leave for work, work, work, work, call at lunchtime (IF he takes lunch) sounding overwhelmed, come home (later than usual,) walk in looking overwhelmed, eat overwhelmed, walk around overwhelmed, sit down to work at my desk being overwhelmed, sleep fitfully, wake up, do it again.  The weekend is pretty much the same, except he’s not leaving the house, just working from here and not really coming down from the ARGH level his project provokes.

Neither the kids nor I are used to this.  We’ve been, up until now, a family that works to live, and not the other way around.  Coming home is a time to leave work behind, and now the darned thing is stuck to Dada’s shoes, hair, clothes, nostrils, and we can’t seem to get it off him.  His focus is stuck.  We understand it’s necessary to be focused, but we’re worried about the part where he can’t be shaken back to normalcy.

I know what you’re thinking: “is he really WORKING or is he preoccupied with something (someone) else????  Hmmmm.”  He’s really working.  If this is the way he would have an affair, I pity the woman who would get involved with him.  He eats with a pained expression on his face, and we can all tell that he’s thinking of the long list of things he has to do when the meal is over.  I’ve caught him scribbling notes about what needs to be addressed once this project is launched and fully operational; not even Grand Moff Tarkin looked as focused during construction of the Death Star.  In fact, there are moments when Dada reminds us more of Admiral Motti in the midst of being choked by Darth Vader’s command of The Force.

So…last night I had to do a reality check, and we both went to bed angry.  This is something we never do.  We might go to bed miffed, but we do our best to hash it out before going to sleep.  This morning we woke up miffed.  It seems, or so I’ve been told, that I’m not “getting” how hard Dada is trying to not be so focused.  I had to explain, as calmly as a woman having a hot flash can manage, that when you get home and don’t even kiss your wife hello, march upstairs to change and come back to have dinner still talking about how much you have to do is not, in fact, “trying.”  And then I got the word again: “I’m trying to help you as much as I can!!!”  That’s when I said, quite simply, that I DON’T need his HELP with the house or the kids or the trash or anything else.  I can DO the housework and then some (I AM, after all, a WOMAN and highly-trained to do all this) by myself.

Men will very likely take Dada’s side on this, and women might say “oh, but the poor guy is trying!”  I know that, but I’m going to tell you the same thing I told him so, please, bear with me.

A database is an ethereal space in which concrete information is stored and manipulated.  Ultimately, we are ALL expendable and replaceable in a work environment.  We might be easy to replace, or it might take a little longer to replace us, but…we ALL are replaceable.  No one should do their job in such a way that their job security is so iron-clad that time off is out of the question, that illness is more of catastrophe because of our absence from a work obligation.  You know where you’re not expendable or replaceable??? In the Real World.  Do you know where the Real World is?  Where the people who love you and live with you are.  Yes, yes, you do what you do for your family, to give them what they deserve…what good is a house, nice furniture, a car, vacations,  nice Christmases if the person you want to share them with is not there?

We’re poor.  That is: we have enough money to live on, and we -from time to time- gasp for air with a lot more desperation than we would like.  However…I’ve never really felt like this is what defines us as a family.  It used to be that was defined us as a family was that outside that door (of B-88, or 52, or 145, or 517, or 1207) work stopped.  We talked about it, but we came home to be at home.  We were here; we were present; we didn’t dwell.  I understand this project is HUGE for Dada, but…I don’t want Dada to be over before the project is done.  Does that make sense????

I explained to Dada this morning that, ultimately, if something happens to him because of this relentless whirlwind of work- AND self-imposed stress, he will have achieved nothing.  “I can’t be in love with your insurance for the rest of my life.  Your co-workers will initially offer their support, but they’ll have to go back to their lives.  And I’m going to be REALLY pissed off that you didn’t listen when I told you that you need to disconnect for at least half an hour a day, and allow us to help you be yourself, and not just Work Dada.”

We can do this. I am 100% behind getting the work done and doing it efficiently, but I’d like my family to be fine when it’s over.  I’ve put my foot down, and perhaps I’ve also put it in my mouth, but I am sort of madly in love with the man, and I’d like to see him get very old over a long period of time, and not just get very old because he’s stressed himself out over THIS.  And the kids (who are no longer “kids”) miss him, and wish he would be his usual self long enough that they could get a little bit of what he usually brings to the dynamic of our family.

I guess this is what I get for living in the La-la Land of “we don’t live to work, we work to live,” huh?  I’ve taught my family one philosophy, and now another one is being pushed down our craws.  Yoda said “there is no try; there is only do,” and now I am expected to try to unplug this wonderful man from his “work brain” long enough to enjoy a meal…  I guess it would be a lot easier if we didn’t LIKE him so much…