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Posts Tagged ‘Cranberry Guster’

My mom came to pick me up yesterday morning, just like every Saturday.

(We switch cars every week but she likes to drive either way because, she says, my driving makes her nervous.  I’ll not waste time defending my driving skills; suffice it to say I feel the same way about her driving.  I capitulate and let her drive because we argue enough as it is…it’s just one less thing).

The visit with Jonah was cute and fun, punctuated by a medium meltdown in the car, the kind where he squishes himself way down in the car harness and kicks Andy over and over with his strong, long legs, necessitating pulling the car over immediately. 

Take our coffees out of the car, Andy says, and get out.  I know he is protecting all of us, especially me, from injury.  This is now routine procedure.

I get out of the car and it is very cold and snowing – the kind of snow where it all clusters together, forming planets of snowflakes, drifting through a universe of cold.  Andy is now in the backseat with Jonah, calming him, still telling me to keep my distance.  And so I step back .

My eyes fill just a bit with tears this day, and I lift my head to the sky to stop them.  Through a blur I see the planets of snowflakes, layer upon layer upon layer falling ad infinitum, and for a moment I stay on Planet Snow with whole frozen moons landing on my face and eyelashes because I don’t want to hear or see Jonah crying, squirming, pleading all done?  all done? when in actuality he is not all done at all, not usually, not hardly ever.

He hits or kicks right after declaring he’s all done.  It takes a while to get to the real all done.

But I digress.  And dramatize.

It was a small incident, comparatively, and we returned to the apartment, listening to Cranberry Guster kinda loud (at Jonah’s demand) all the way back.

Just before we arrived at the apartment Jonah asked for Thomas? which is a rare request, but one not unexpected, seeing as how Thomas and all his friends are pieces of train.

What does one train say?  Jonah asks his dad.  Choo Choo!  Andy answers.
What do two trains say?  He asks again.  Choo Choo!  Choo Choo!  Andy says.

Jonah’s loves this.  Two trains say choo choo twice.  That’s right, Boo.

A few days ago someone on twitter asked me if I would participate in a survey-study of parents of kids with autism.  The survey questioned:  When your autistic child graduates high school, what are your expectations for his or her future?

Jonah is (nearly) twelve, and two trains says choo choo, choo choo.  Does that answer your question?

They are working with him in school now using an iPad.  It’s only been a few days but it’ll be interesting to hear how he’s doing on it.  I wouldn’t be surprised if he can read a little, even with just his right eye.

The autism spotlight always seems to shine on high-functioning kids (or kids with Aspergers), almost as though there were no other manifestation of autism….or as if any other kind were something unpleasant to think of – and eventually, maybe, something to be identified in the womb, so women can choose not to carry a baby like Boo to term – just as 50% or more of women carrying a child with Down’s Syndrome choose to terminate today. (I got that percentage from a few different articles, none of which said the figure was less than 50%).

These are just things I’ve been thinking about lately.  Me and my happy musings.  I can’t and won’t judge.

Zoom back to the apartment, at Jonah’s delight upon greeting Thomas – at distributing the items in my mother’s cooler to the cabinets and fridge, very neatly – at sitting at the table to eat and asking for what he wants, at throwing away his garbage when he’s all done.

Of course he also will take my full drink and, in his little business-like way, march over to place it on the refrigerator shelf, returning to collect grandma’s full drink as well.  And he will run shrieking and dripping from the tub to turn the volume up while Cake plays Meanwhile Rick James.  Then, laughing, he’ll run into Andy’s room, jumping around, screeching with happiness on the big blue bed until we can catch him with a towel and hand him his clothes to get dressed.

The we dance, Jonah and I, to Guster’s What You Wish For and we jump around giggling and turning in circles, my hands and his clutched and moving together, swinging our arms to the rhythm.  It’s worth everything to me to see him like this.  Collapsing, I clutch him to me and shower his face and hair with mama kisses.

My mother worried about the snow, so we left a little early.  No sooner had we gone through the tollbooth to get on the thruway (but not close enough to actually get on the thruway), her Taurus loses not its rev but any forward or backward motion.  This is where I could make this blog post very very long, but I won’t bore you with all the details.

Suffice it so say her car is now at a transmission service garage in Kingston, and M came down from Albany to pick my mom and I up and drive us home.  I just kept thinking thank God Jonah wasn’t with us.

The only other remarkable note is that M and I are becoming Healthy People, the kind who exercise (he even goes to the gym nearly every day now) and eat things like vegetables and fruit and beans and nuts and just a little free range chicken.   I even ran into my favorite doctor at Trader Joe’s.  We’ll see how long it all lasts, but at least we are doing it now.  I mostly jog in front of the TV or run up and down the stairs to the basement, and do my hand weights.  But I already feel the endorphins and the tightening in my core.  Comes a time you can’t depend on Youth anymore to forgive your bad habits.

And at least we got to see Jonah before my mom’s transition blew.

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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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