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Posts Tagged ‘The Curious Incident of the Dog in the Night-time’

My article for the next Capital District Parent Pages is due on the 10th and I haven’t written it yet.  Puts you right back in a school mind frame, with deadlines for essays.  Since I love to write it’s actually cool.  In college I used to amaze my fellow English majors by completing my essays the night they were assigned, though the professor had given us 2 weeks.  I never told anyone, but the thing is I wanted to write the essays.   (Plus there was the added benefit of getting it done when everyone else waited until the last minute).

Then I think further back, to high school, and I remember about Mr. Fleischer, and can’t stop thinking of Mr. Fleischer, and I say to myself he is gone, he is gone. 

After 4 years of chorus in high school, I sang in college chorus all 4 years as well.  And yet, God help me, I don’t even remember our college choral director’s name.  Of course that was 20 years ago, but still it underscores the impact of Mr. Fleischer on my life.  Every online moniker I’ve had has been winklett because it is the name he gave to me.  That choral director in college….he was pretty good, but that’s it.   Funny how I expected him to be more.   Mr. Fleischer set that bar very, very high.

Now that I am thinking of Mr. Fleischer, all these memories wash over me.  Like how I loved being in the chorus room and spent as much of my day in there as possible.  I even ate my lunch there; Mr. Fleischer never minded (unless we left a mess behind).

In the chorus room I could avoid people who made fun of me for being skinny.   The kids who hung out there were fun – even the cool ones.   There were these boys who formed a comedy routine/band:  The Four Neat Guys.  They were awesome.  I remember they did George of the Jungle….there’s more, on the tip of my memory.  I remember a kid who could recite the entire movie Monty Python & The Holy Grail.   But there weren’t any bullies.  It was a sanctuary.  I want to crawl back in.  I haven’t seen Mr. Fleischer in years, and yet I’m mad that he’s been taken away from me.

I’m mad about Jonah, too.   Mad at my helplessness.  Mad that I couldn’t raise him anymore.  Mad that I can’t smother him with kisses.  I think of the kid in that book The Curious Incident of the Dog in the Night-time and how he would only touch the tips of his fingers to his father’s – it was the only physical contact he could stand.  Andy gets frustrated with me when I get too close to Jonah right away – and I know he is right – but  I want to hold him, hug him, squeeze him tight.  I want to put out wings and cover him.

He’s an only child, now one of 8 kids in a family of rotating caregivers.  I want them to love him,  unconditionally, and that’s an unreasonable thing.  I can’t help wanting it.  I don’t care.  Some days I think this has all gone on too long now.  Some days it is all I can do not to drive there and snatch him away.  But I know I can’t take care of him either, and it would be doing him a terrible disservice.  I need this to be the case and I hate that it’s the case.

Most Saturdays he and I will sit in the back of his dad’s SUV and sing “Cranberry Guster” songs, and always after a while his eyes silently ask why, mama?  Then a few moments later, he begs me in his little-boy voice:  “home?”

Sometimes he asks it two or three times.

I think he is beginning to ask it out of habit and not so much as something he can actually hope to expect.

Here are some pictures I took of him this past Saturday:

my face against the window

beloved bath-time

swinging with his silly hat

gazing into the mirror:  jonah is closer than he appears…

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It’s always interesting and enlightening to me to review the old posts here; I feel like I should chart them – become scientist and statistician, calculating probable provocations and correlating causes.   Everything was going in the right direction, wasn’t it?  With minor setbacks, we’d come to a place where he was only (and I use that word with irony) aggressing one to three times a day.

Here I’ve just got to pause and mention (not for the first time, I realize, but it bears repeating) that I get the feeling when I tell someone my son had seven “aggressions” at school today, they are envisioning tantrums.  What’s the big fucking deal? I can almost hear them think.  It may be paranoia on my part, and I know I shouldn’t care either way, but sometimes I want to install a video camera and film the whole kicking, biting, thrashing, hitting, enraged scene sometime to play it back for the world. I actually felt vindicated when it took 4 grown men (3 of them cops) to hold Jonah down on the way into the CDPC crisis center that God-awful day, if only to prove I wasn’t such a pussy after all.

But why am I seeking validation in the midst of this mess?  Maybe because I am beginning to feel slightly unhinged.  I need something to count on, and everything that was solid has liquefied.  Every slope is slippery; every day a question mark.  There’s no consistency to his behaviors.  No reason for them happening today and not yesterday.  Or is there consistency and reason and I simply don’t, or won’t, or can’t see it?

I puzzle it out and puzzle it out but I have no idea.  I want a magic wand, not to wave the autism away but to make him happy again.

I should pitch this life to reality TV producers.  Come look at our crazy-ass household for one day. They’ll jump all over our three-ring-circus existence like white on rice.  CDPC and Four Winds, child protective services and separation.  Violent kid with autism.  Shitty diapers.  Meltdowns.  Mom sobbing.  Dad yelling.  And autism’s such a hot topic right now; it’ll sweep the nation.  I’ll be the new Kate Gosselin.  Ugh.  Somebody shoot me.

This morning Jonah seemed a little, well…squirrely, I guess you’d say.  He had a certain look in his eye I’ve come to recognize and almost fear; that boy communicates more with his eyes than anyone I’ve ever met before.  But I managed to get him fed and dressed and off to school, and I drove happily to work (will I never learn to keep my guard up, to expect a day of difficulty?), then missed a call on my cell from the social worker at Wildwood; she left a voice mail telling me Jonah’d had seven aggressions thus far (by 12:55pm) and did I maybe have some insight or did I know anything about him not feeling well?

I tell you my heart sank.  Seven aggressions?  Seven? So, what, do the meds just suddenly stop working?  Is he feeling sick and he can’t tell me?  (That thought horrifies me).  Is he scared?  Confused?  Does he want something he can’t communicate to us neurotypical folk?  All of the above?  WHAT?!

So I spoke with the social worker (no, I had no insight and no, I had no idea if he wasn’t feeling well), and Andy made a plan to meet Jonah at the Center for the Disabled right when the bus arrived to drop him off, and then take him straight to our house.  My boss allowed me to leave early enough so I could meet them there and Andy could still go to his night job.

When I walked in at 4:30pm, they were in the midst of an after-attack, which is visually similar to a town hit by a tornado, right down to the injured and shaken survivors.  We finally got Jonah quieted down and to bed, so Andy was able to shower and leave for work (late).

Our sitter, a great guy who teaches at Wildwood, came at 5:30pm; I paid him good moneycoin essentially to be an adult sane person to talk to for an hour.  Oh, and I also paid him in literature, compensating his company with a copy of The Curious Incident of the Dog in the Night-time.   Jonah had just fallen asleep when the sitter arrived, and I needed his protection to make sure the kid was going to stay asleep.

Even Andy said he never wants me alone with Jonah again.

That he never wants to be alone with him again.

So much for fine.

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