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“I caught a piece of the sunshine, put a little hope in me
But after the flood raged, there’s nothing really left to see
But I was not done, or beat, the violence was a source of strength:
Not everything is always just as it seems…”

~ Guster

I gave Jonah his pill right off the bat Sunday morning and warily waited to see what kind of kid the world was going to deal me this day.  Attack number one came early; we were sitting together on the couch watching Thomas the Tank Engine when he turned sideways suddenly and kicked me in the face.  I jumped up to avoid further injury and held him on the couch until he quieted, then we counted down together and he seemed okay.  (I think I’ll have a bit of a shiner though).

I guess I got a little squirrely.  I knew I wouldn’t have help until early afternoon at best and I was tired of being afraid.  I decided that even though the new 5-point harness I ordered for our car didn’t arrive yet, I would secure him in the car seat with the shoulder strap, tight, and lap belt too, and pull the driver’s seat up as far as possible.  I figured he’d be safe and I could just drive him to see the train and wherever else, anywhere else, just to eat up time.  He did get to see the train but he was cranky and seemed really light-sensitive.

He asked: car ride? …so I decided to take a familiar loop through Altamont and back around to Voorheesville.   Very suddenly and without provocation, Jonah unbelted his seat belt (which I thought was too far away for him to reach) and launched himself at me, grabbing a chunk of my hair and my glasses, which went flying.  I can’t see to drive without them, so I pulled over abruptly.  Quite automatically, without much thought or premeditation, I found my glasses, got out of the vehicle, closed the door, walked to the front of the car, pulled my cell phone out, dialed 911, and blubbered out the story of my Lifetime TV movie life to the dispatcher.  I’m afraid to drive, I said.  I’m afraid he’s going to make me go off the road and crash, I cried.

Passing motorists gaped at the sobbing lady on her cell phone.  Soon I was surrounded by three emergency vehicles (I told them no ambulance was needed, thanks anyway) all filled with people who wanted to help me but seemed confused as to where to take us exactly.  The whole time Jonah was in the car and pretty calm.  I thought maybe they’d think I was nuts, he was so calm — I wasn’t sure they’d even believe me — but I had teeth bite marks from yesterday and a brand new puffy cheek to prove I was indeed, I guess, a ‘battered mom’.  Finally they put Jonah, car seat and all, in the back of a cruiser and I followed them to the AMC/CDPC crisis center, where a doctor talked to us briefly and I called my friend M to come and meet us there.  I told the doc I thought I could handle things with M’s help; they fed Jonah another dose of clonodine, a peanut butter and jelly sandwich, chips, and a nuclear-orange colored drink while he watched Toy Story and I rested on a bench, closing my eyes, focusing on breathing.  In, out.  In, out.

“…so take a breath and step into the light….everything will be all right…”

~ Guster

He stayed incident-free once we got home, and my friends P and Mx kindly dropped me off some yummy cider, pie, and black soda.  After I put Jonah on the bus to beautiful, blessed Wildwood School, I’m going to bring the cider and pie to work, heat both of them up, sit at my desk, eat, drink, and smile from the complete respite of it all.

Sweet, wonderful work.  Marvelous Monday.

Bring it on.

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on the ocean

On the ocean
I think we’re taking on water…
the storm is on the way,
but I will hold on anyway.”
~ Guster

This is a ridiculously tough post to type, so please forgive any type-os.  I doubt I’ll be editing this one.

I’ve got enough of my mom in me to want to avoid “airing dirty laundry,” as she would put it.  But we’ve reached rock bottom here and I should at least explain why I haven’t been around to post.  Because I just put Jonah to bed and don’t have enough energy to tell the whole tale, I’ll present a Reader’s Digest version of our tumultuous time on the ocean…

This past weekend Jonah had a very rough time behaviorally.  A VERY ROUGH TIME.  On Saturday he threw a toy from the backseat and hit Andy in the head while he was driving.  Andy’s response was way over the top, without a doubt inappropriately so, and I had to take Jonah away from him.  After going back and forth with Andy over the phone – I wanted him to take a break and leave the house for a week or so; at first he refused – Andy decided to check himself in to a hospital.  This was Monday, I guess.  I am so frazzled.  I forget what happened which day.  I don’t know what order things happened in, or how we got here, or how this is became my life.

Jonah continues to be in “random attack mode” and since Monday I have gone into “taking care of business” mode.  I have taken many steps to mitigate the behavior and ensure our financial, emotional and safe survival, including applying for home behavioral support services, getting Jonah on a low dose of clonodine, arranging for a special harness seat on the bus, making a myriad of appointments and phone calls to schools, doctors, agencies, and coordinators to arrange for services so I can still go to work and care for Jonah as well…

…things I took for granted are now huge considerations.  How to go to the grocery store.  How to go to my therapy appointments.  How to sleep.  Eat.  Breathe.  Remain sane.

I’ll go into award-show mode now.  I’ve won nothing but nonetheless am on the podium and have just been called to give credit to those who so deserve it:  I couldn’t have gotten through this weekend without my cousins D and B, who dropped everything to stand by me & get me through this; they’ve helped with Jonah, incurred injury after injury from his attacks, and pulled me up from the waters that threatened to drown me.  My mom has offered her home, also suffered injury at the hands of my out-of-control son, and come to my aid to help even when I am stark raving bitchy.  My dear friend M has stuck by me through so much – rearranged his whole schedule to ensure my safety and ability to cope.  My dad has been very supportive.  My boss has been fantastic.  My friends are caring and there if I need them.  My cousin Brian is ready to jump to help me with whatever I need.  Even the people I supervise at work.  I am grateful.  I am grateful.  I am so incredibly grateful.

This is a trial by fire if there ever was one.  Andy and I had already decided to separate, but I hadn’t said anything just yet; now I may as well tell that too and get it all the major shit over with in one post.

Sorry if all the dirty laundry is stinking to high heaven.  I hope the meds and behavior supports and whatnot serve to bring my sweet boy back.  I hope Andy is getting the care he needs and is okay.  I hope I can keep it together.

If you’re the praying sort, I could use some of that.

We’re staying afloat…

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Today has been a very hard day for Jonah behaviorally and I don’t feel like talking much about it.

The fact that it’s the 8th anniversary of my best friend Gina’s suicide doesn’t help. She’s been gone almost as long as I knew her.  Of course I can’t wrap my mind around her being “gone” at all, let alone for that length of time.

Time mystifies me.

In spite of my drama, it is absolutely deliciously crisp & autumn-gorgeous outside. And I have a list of good things that have happened today:

Jonah got to see two trains.

We went to grandma’s house, where Jonah pooped on the potty and got some black soda.

Jonah asked for red barn (a favorite landmark he enjoys passing by on car rides) and he got red barn.

My mom bought me a delicious turkey sandwich.

Jonah and I are listening to Guster’s brand new CD, Easy Wonderful, as much as possible, over and over.

Sometimes when he whines and yells incessantly from the backseat, I drown him out:

I was down for the count
Without any real way out
In this new submarine
Like the whale of Jonah’s dreams

What if I should rise up
From several fathoms deep
A scar on my soul
And a humbling tale of the world
That swallowed me whole…

swallowed me whole…

~Guster

 

 

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It’s almost funny that my not-so-clever tag-line is “Autism, sans sugar coating,” because I actually do sift a liberal amount of sugar about.  A lot of the events and anecdotes I write about here are moments of cute, silly, Reader’s Digest-quips, between hours of struggle.  Fear. Overwhelming helplessness.  Jonah’s screaming, followed by our collective silence.  It’s been so long since I’ve experienced any life even close to normal.   But this blog is not a diary, and I didn’t come here to complain.

I don’t want to be a self-pitying person.  I try to focus on what is endearing.  But fuck it.  I can’t bring you into my world and then only show one side of it.  I don’t want this to be a happy little vapid blog that doesn’t say much of anything of any use.  I know other families are struggling like this.  They’ve got to be.

I know I am not alone in feeling like my son and I are societal pariahs, and I know other people must look forward to winter too, so they can hibernate in finished basements and empty malls.  At least I believe these things, if I can’t know them.  It makes me feel better to believe them.

Day after day, entry after entry in the dreaded school-to-home log book.. his sweet teacher trying valiantly to euphemize attacks and aggression with happy faces about the 5 minutes of the day when he was actually good.

He missed the school apple-picking field trip this week because he was so bad on the bus.  They took the rest of the class and one teacher went back to the school with him.  This is why I don’t try many outside “normal kid” activities.  Jonah’s not the nice little developmentally disabled boy on the SAFE (Sports Are For Everyone) softball team.  He can’t wait – softball is, almost by definition, waiting – and he’s not interested anyway.

He’s not the kid who will happily play at the birthday party at Jeeper’s.  He’s the kid in the very rear of the building, running up and down concrete steps leading to the emergency exit door.  He’s not even the kid who swims in an organized class, because he wants to get in the water and back out again at will.

He’s not any kid I ever dealt with
or handled
or loved
or feared
or was amazed by
or cuddled
or played with
or was depressed by
like this.

Some days we are worn down to barely functioning humans, Andy and I, trapped in this world we can’t navigate.  There is no barometer, no compass, no captain.  We don’t speak of it much because it always feels like there really isn’t anything to say.

Today Jonah attacked the bus driver, the after-school program coordinator, and Andy.  I got home before Andy and Jonah, and when they came in Andy was driving Jonah before him into his bedroom where he pinned him down on the bed.  I went to an eyeglass store so they could bend Andy’s mangled glasses back into wearable shape; Jonah had twisted the frames in the midst of his kick-hit-scratch-swat fest.  We’re tired.

Did I mention we are tired?

Pulling into the driveway after having Andy’s glasses fixed, I saw a fat rainbow:

and some floral-blooming sunset clouds:

And in the midst of my heart-pounding hand-shaking anxiety, I stopped to take pictures.  I had to.  I bring the camera everywhere.

I have to let all the beauty fill me

at every opportunity.

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“Knock knock knock”?  Jonah asks me.

This is not the beginning of a joke, but a request.  He is asking me to knock on his head.  I knock three or four times on spots all over his noggin; he giggles and says “fast!”  So I knock faster, using both hands to create light little rhythms.  Jonah loves to be knocked on the head – what can I say?  Knick knack paddywack.

He also loves other kinds of sensory pressure.   Some folk on the autism spectrum are really sensitive to touch and can’t tolerate certain textures or pressures, but Jonah craves them all.  He wants to cuddle so close that he melts into the shape of you.  He wants tight squeezes and massaging pressure on his shoulders, neck, and back.  He wants to reach out from the backseat of the car and gently place his fingertips on my shoulders, sometimes pulling as if to gather me closer.  Sometimes if he is freaking out in the car, I calm him by pressing my hand on his knee.  (This technique got us from Cape Cod all the way back to Albany when Jonah had such a hard time keeping it together after vacation).

“Huck?  Huck?” he asks every time he’s done something wrong and wants to get back in your good graces.  It’s his unspoken apology, overused and often insincere.  You’re not sorry, you little shit, I think sometimes. You just want  a hug.

Worse is “up up up?” –  meaning he wants me to pick him up and carry him, usually from the car (where he has just flipped out) to the house (which is where he’ll end up, specifically in his room).  But this is where I draw the line.  The kid is eight and a half, for the love of God, and though he’s thin and lanky like his mama, he’s still at least a good 50 pounds and liable to break my back.

So I walk heavily, practically limping, Jonah hanging and clutching onto me; I’ve grown a massive, screaming tumor from my midsection and my mission is to deliver it inside.  It’s like we’re playing that three legged race game at the elementary school Olympics.   So, mushed together in a human blob, we walk as one up the stairs and into the house.

Where he’ll likely ask for a hug – and later, once he’s calmed down, “knock knock knock?”

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Jonah’s got your usual assortment of ride-on toys:  bikes, scooters, wagons.  My mom even bought him this newfangled thing called a PlasmaCar.  You put your feet up on the toy and it’s propelled along, somehow, by steering and body movements alone.  As described on its website:  “It’s like magic, but you don’t need to be a magician to get it to work. The PlasmaCar is a mechanical marvel that makes use of that most inexhaustible of energy sources, kid-power, by harnessing the natural forces of inertia, centrifugal force, gravity, and friction. It’s so easy to operate; all it needs is a driver and a smooth, flat surface.” The PlasmaCar may be magic, but Jonah doesn’t know that and no amount of demonstration has helped him.  He just puts his feet down on the ground and scoots along on the thing.

We keep all these ride-on toys in our enclosed back porch, where Jonah’s play usually involves carefully arranging the placement of each toy.  Sometimes the construction of a village (in and of itself) is his play:  wagon over here, bike right beside it — angled just so — and the PlasmaCar tucked behind them both.  Even when he drags one out to actually ride on, the ride is always systematic and ritualized:

He’ll arrange the ride-on toys, select one, propel down off the step from the porch to the ground, and travel along our long, straight driveway next to the brick side of the house.  Make a sharp left turn at the walkway and stop at the steps to our front door.  Stand up and turn the toy around. Get back on.  Make sharp left turn and continue down to the edge of the driveway.  Pause.  Turn and travel along the side of the house to the porch area again.  Walk the toy up the step and back onto porch.  Close porch door.  Open porch door.  Steer toy toward the step.  Propel down off the step from the porch to the ground, and travel along our long, straight driveway next to the brick side of the house, etc.  Repeat.  Repeat.  Repeat.  Repeat.

Some of Jonah’s ride-on toys are outgrown Big Wheel type things that we keep around because Andy babysits a toddler once a week.  We’ve even got a baby stroller in there, and yesterday, for some reason, this was my 8 1/2 year old’s ride-on toy of choice.  He’d never ride in the damn thing when he was stroller age, which gave me a little flare-up of annoyance at such belated interest, but I was generally game.  I  figured he’d let me push him up and down the driveway; I could push him fast, make quick turns, and we’d have fun with it.  But Jonah insisted on going solo, propelling the stroller with his long big-kid legs.

Here he is at the end of our driveway, preparing for the Flintstones-style foot walk-ride back down the driveway.  I’ve ceased to be embarrassed by his many public eccentricities, so this didn’t really phase me; I figure we might even be entertainment for our normal neighbors.  But when he parked the stroller back on the porch, tucked both feet up on its footrest, stuck his thumb in his mouth, and gazed squarely over at me, I had to laugh at the unspoken challenge:

Yeah, I like the stroller.  Whaddaya gonna do about it?

He’s such a punk.

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I bought a small package of M&Ms yesterday at the grocery store – one of those impulse buys you make in line while reading front covers of rag-mags featuring things like Snooki’s latest antics and Kate Gosselin’s hot new bikini body.   I never take Jonah with me to the grocery store…haven’t done it since he was a baby.  Andy brings him along on occasion, but since he claims he does not physically tie Jonah to the grocery cart, I can only deem this a minor miracle of the same magnitude as my dad taking Jonah along (not once, but twice) to Catholic Mass while the child sat quietly through the whole hour.

I barely believe these stories, but there they are.

At any rate, the stupid little bag of M&Ms has been the bane of our existence ever since.  When I got home from the store I put the bag on the counter, not thinking much of it.  Jonah’s superior candy radar scoped it out almost immediately, though:

“Skittles?”  he asks me, mistaking my bag of M&Ms for the similarly shaped multicolored treats.

“No, these are M&Ms.” I tell him. “And they’re mama’s,” I add rather meanly.

“m m m?”  he pleads.  He has not been a very good boy this day.  He was screaming at school and he hit a teacher, then was a mess at the after school program too.  I am barely in the mood to feed him dinner, let alone candy.

Finally I get him to eat something dinner-like (he has been really good lately about eating raw veggies dipped in some kind of dressing) and then I stingily offer him two M&Ms.

“What color are they?” I ask.  “s’orange,” he replies as he gobbles them down.  Then:  “m m m?”

I give him two more, again playing the color game.  Then, to avoid any further dilemma about M&M distribution, I tip the small bag and pour the rest into my mouth and down the hatch.

“m m m?”  he asks me again.  “No more,” I say.  “Sorry, boo.”  After a while he allows himself to be tempted away with the promise of playing with moneycoin downstairs.

He obviously hadn’t forgotten about it, though.  This morning when Jonah woke, he came in our room, climbed into bed, and loudly announced:  “m m m!?!”

Next time I buy chocolate I’m hiding that shit.

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Doctor: Ray, do you want to stay and live with your brother Charlie?

Raymond: Yeah.

Doctor: Or do you want to go back to Walbrook?

Raymond: Yeah.

Doctor: Which is it? Go back to Walbrook or stay with Charlie Babbitt?

Raymond: Go back to Walbrook, stay with Charlie Babbitt.  Stay with Charlie Babbitt, go back to Walbrook.

~ Rainman, 1988

– – –

“Jonah, do you want a donut?”  I ask him this morning on the way to the train.

“Donut?”  he repeats.  “Okay, boo, mama’ll get you a donut,” I tell him.

I come out of Stewart’s with a donut and hand it to him.  Before he’s even taken the first bite, he’s on to the next request.  “Grandma?”

“Grandma’s closed,” I answer.  I know my mom’s working today so that means she won’t be open for business until at least 3:30 this afternoon.  We continue on to the train tracks just as a train is going by, so it’s an instant-gratification experience for Jonah.

“Eddie?”  comes the next request.  Eddie is our office cat where I work, and sometimes I’ll take Jonah over on rainy days to feed Eddie a treat or throw a jingle-ball down the stairs to him a few dozen times.  The last place I want to be on a lovely weekend morning, however, is my workplace, so I shoot down this request as well.  “Eddie’s closed,” I say in what I hope passes for a mournful tone.  “Let’s go for a little car ride.”

“Window?”  he asks.  I give him the go-ahead and he rolls his window down all the way.  It’s kind of cold, being a mid-September morning — maybe 55 degrees.  But Jonah is impervious to cold in a way I neither share nor understand, so I turn on my heated seat and crank up the blower heat too.

My best friend Gina loved rolling her window all the way down, in any weather, and I find myself thinking of her…remembering our road trips, all the car’s vents directed toward me, blowing hot as she enjoyed the chilly wind.  She died 8 years ago but I can almost hear her laughing at me, riding around Voorheesville early Sunday morning to watch a train go by, for God’s sake…blasting heat and begrudgingly allowing Jonah to roll his window down.  I like the wind too, I imagine her whispering in his ear.

Then:  “This way?!”  Jonah half-requests and half-insists.  He has not pointed in any direction so I don’t know which way he wants to go.  I glance backward and ask him again.  “Straight?”  I guess.  Straight will take us along our normal loop up through Altamont and back to the train tracks in Voorheesville. “Straight,” he repeats (while pointing to the left).  But I’m not looking at him, so I drive forward, operating under the foolish assumption that Jonah knows what straight means.  “This way!”  he shouts, agitated now.  “This way!”

I pull the car over so I can see where he’s pointing, and then turn the car around to pass back over near the train tracks.

“Train?”  he asks.  “That way?!”

“You want to stay here and wait for another train?”  I ask.  I am very nearly ready to endure whatever tantrum is brewing rather than attempt to further unravel his fickle directional desires.  “Stay he-ah?”  Jonah echoes.  So we stay.

I lean back in my seat.

I close my eyes.

After a minute or two, from the backseat:  “That way?!”

I can’t help but laugh.  “Jonah,” I ask him, quoting Rainman, “do you want to stay with your brother Charlie or go back to Walbrook?”

“Stay he-ah,” he answers definitively.   Not five minutes later another train comes by, and Jonah is delighted.

Sometimes I think he’s got it all figured out and just likes to mess with my head.

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It’s just 9:30am and Jonah’s already on a long stretch of quiet time, earned by throwing a heavy laptop toy (and his juice) at me as we were getting in the car to go see train.  And yesterday he launched himself, kicking and scratching, at our awesome babysitter; luckily she had been taught a “hold” to keep them both safe.  Andy knows these holds too, having worked for more than a decade as a teacher at a small school for emotionally disturbed kids.  I don’t know the holds and need to learn them.

It is Monday, the first day of my week-long vacation from work; tomorrow morning we leave for Cape Cod, back on Friday.  I am frightened and tired and numb – oh myand feeling like the only good thing is Jonah’s in his room safely and I can write a little bit to ease myself out of this state of mind where nothing about this feels like vacation.

But I don’t want to talk about these things – not here, not today.  I believe what you focus on expands and so I will focus on something else; I will tell you about Jonah’s adventures yesterday, pre-flip-out-on-the-babysitter.

He asked for Russro Park, which has trails and woods behind it.  I knew he wanted to run into the woods and toward a big mound of dirt where he likes to play.  Andy and I both took him, which is kind of rare – usually only one of us takes him out, so the other one can have a break.  As I predicted, Jonah wanted the forest.  While he played on and around his dirt mound, Andy and I fashioned spears from small branches and played javelin-throw into a sandy area.  We goofed off, Andy channeling Thundarr the Barbarian, shaking two branch-spears and grunting cave-man style.  Me teach you, woman, how to kill bear. My wussily-thrown spears clunked horizontally to the ground, killing only my ego and maybe an ant or two.

Jonah, in the meantime, had discovered a small embankment where he could slide down the dirt to a level of forest maybe 5 feet lower.  This dirt-slide became his own personal woodland playground for the next half hour or so.  He tossed great handfuls of sappy pine cones and moss-covered sticks about, laughing the whole time.  He rolled in the dirt; bathed in the dirt; became one with the dirt – until he was completely layered in it, brown flour coating the baking-sheet of his body.  “Okay, boo, 5 minutes!” I called over to him.

“More stay here!”  he shouted back, panic in his voice.  Andy shrugged.  We stayed a while longer.  Jonah came over to where I was playing with sticks and stones in the dirt and asked for my bottle of water, which I let him take to his play-spot.  Minutes later I realized my mistake.  He’d taken the top off and poured the water over himself and the ground, making a big, fat, muddy mess of himself.  Now it was really time to leave…do not pass go…directly to the bathtub.  “More stay here!” he protested again…but even he must have known it was time to get cleaned up, for he capitulated nicely and we returned home for a marathon bath session.

When he was dry he came to me, asking “camwa?  camwa?”  I thought he wanted to see this train video I’d taken – so I set it up, started the video, and handed the camera to him.  But he handed it back to me and said “say cheese!”  Maybe he wants to take a picture or two.

I grossly underestimated his interest.  He took probably 200 pictures, in rapid succession, giggling “say cheese!” to me, to the dresser, to the mirror, to the bed, to the ceiling.  Here are my favorites:

Jonah took this picture himself

Jonah's new hobby

So maybe his new thing is photography.  I’ll be damned if I’ll let him break my camera, though, so I’ll set him up with the Fisher-Price digital camera my mom gave him a year or two ago.

I am continually frustrated by my inability to photograph anything with success, but I like taking pictures too.   If you really want to see some kick-ass photography, just check out my cousin’s photo blog.  (She’s got some pics of Jonah there too).

So maybe we’ll have lots of beach pictures taken by Jonah when I post next, probably on Friday.  And maybe I’ll have good news to report – maybe we had fun, maybe the weather was perfect, maybe the beaches were open for business — and maybe Jonah got through it all without attacking anybody or screaming penis! to the sunbathing beauties and leather-tanned fishermen and screeching seagulls.

Maybe.

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Jonah is the lord of self-admonishment.  By this I mean he will do things like shout “NO SHOUTING!”(particularly fun in crowds), repeat recently-declared edicts: “no hitting mama,” or even dole out such specific pretend punishments as “two minutes in your room!”

…but he is also the prince of self-permission.  Gazing longingly at my black soda, he’ll widen smiling eyes and say: “go ‘head!” — as if he’s simultaneously both the one who wants the soda and the one who may bequeath it.  He knows that in the real world he can only have black soda when he does poopy on the potty (which he is getting better at, though he still squats with both his hands and feet on the toilet seat, knees doubled up to his chin, skinny little butt poised over the water – and more often than not he’ll still just poop whenever and wherever he wants, black soda temptation notwithstanding)…

…but when you don’t give him what he has just given himself permission to have/or say/or do, he follows up with the most annoying sound in the world – this screechy, whiny, bitch-boy noise that grates on you in milliseconds, usually resulting in a time-out in his room where he’ll retreat to admonish himself once more:  “Time OUT!  Be QUIET!” — and, as Kurt Vonnegut liked to say, so it goes.

Therefore, it’s especially nice when what Jonah wants is what he’s about to get anyway.

“Go see Barkley?” he asked this morning; it just so happens we go see Barkley, Andy’s parents’ dog, most Sundays.

We are next to one another on the couch and I look up at him.  Before I can even answer, Jonah is nodding and smiling, eyes big with anticipation of Barkley-fun.  “Go ‘head!”  he says brightly. “Uh-huh!”

“Yay!  That’s right!  We’re going to see Barkley!” I answer with all the cheerfulness I can muster for 8am Sunday morning.

“Yup!”  he agrees, grinning around the thumb in his mouth.

Punk-ass.

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