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…

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s