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Archive for the ‘grandma’ Category

It’s been a great summer with Jonah – he was mostly happy, lovey, and good-natured.  Predictable in the best way, and I swear he grew 6 inches since last year — my height (5’7″) at least, when he’s not in his typical slouch.  He went swimming, enjoyed campus walks at school, and his visits with us were awesome –well, at least from my perspective.

Our summer routine:  my mom and I drive down early every Sunday morning, and as always she stays back at Andy’s apartment while Andy and I pick up Jonah at his residence.  About 80% of the time, he’s already at the door, looking through its window for daddy – because it is daddy he looks for.  Andy picks Jonah up for visits a few times a week, and Jonah adores his father.  So as soon as we enter the code and open the door, Jonah walks out immediately.  I don’t take any of this personally.  Whenever I’m not there, he asks for mama, and I know he loves me too.  It’s all just part of how he rolls.

Usually Andy takes Boo to the car while I stay back to sign him out, talk to the caregiver staff, gather his coat or other items, and grab his meds for the day.  When I return to the car Andy’s just putting Jonah in his harness and getting him settled in the back seat behind mama.

Jonah asks for radio and if the song is not what he wants he’ll say other radio – and if it’s not loud enough, he’ll say on which is his way of asking us to turn it up. On! he’ll repeat until it’s either loud enough for his satisfaction or as loud as we’ll let him have it.  Then we drive to either Dunkin’ Donuts or Stewart’s and procure a jelly or chocolate donut, based on Jonah’s caprice.   We head back to the apartment as Jonah eats his treat.  I hand him a wipe and he cleans his own hands and face, then hands the wipe back to me.  Sometimes he asks for kiss hand and gladly I oblige.

At the apartment he confirms Grandma is there and will sometimes acknowledge her, usually accepting a hug or kiss, then heading for the fridge.

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There he pulls out random things he thinks he wants and we help set him up with the burger and fries grandma always brings.  Sometimes he asks for Jungle Book or Oompa Oompa,  his attention span varying in length but always longer than it used to be.  Sometimes he asks for train on computer and wants to choose his own videos, on as loud a volume we’ll allow.  He still, on occasion, enjoys his bathtub brunch.

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Always after these activities and sometimes in lieu of them, he disappears into Andy’s bedroom to get in and under the covers.  I ask “can mama lie with you?” and he always says yes.  So I take off my shoes, make sure his are off, and get in with him.  Usually he giggles: “And the boobie,” he says softly, turning to try to reach down my shirt.  I gently move his arm and he giggles again but stays still.  And after only one redirection, lately, he keeps his hands to himself, turns away from me, and pulls both covers and pillow over his head; I curl into him and rub his shoulders or scratch his back.  Usually we both fall asleep for an hour or so like this.

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I sometimes hear my mother and Andy talking.  They argue politics or talk about Boo.  Andy got rid of TV and my mom can’t have her Fox News anymore, so she reads a newspaper or book.

Like I said, visits this summer were awesome for me.  Andy doesn’t mind if I take a nap with Boo, but poor grandma is left to her own devices.  “Lie down with us,” I tell her, and she could, but she doesn’t want to.  Stretched out on the bed, you can see just how long and lanky he’s gotten.

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Sometimes my mom gets sad about Jonah napping during visits, but I remind her it’s a hell of a lot better than the stretch of time when Jonah refused to get out of the car at all – or, worse, when he was attacking us left and right.  At least he comes in the apartment, even if it’s only to nosh and nap.  It’s more than good enough for me.  My mom is getting older, though, and she tires easily.  It’s a lot for her to drive down.  Lately I’ve been doing the driving, both ways, in her car.  And if I can’t visit for whatever the reason, she hasn’t been going either.

It’s hard on her, and on my dad too, I’m sure.  Jonah’s the only grandchild they’ve got, and they’re surrounded by friends, family –everyone, really, all talking about their grandchildren.  Photos and stories of them at the beach, in a play, on vacation, at graduation.  My parents wanted that too.  They love Jonah very much but I’m sure they grieve the grandchild(ren) they never had.

Because Jonah is 15 now, we’re starting the process of transitioning him to an adult program. He can stay at Anderson until he is 21, but before that we need to identify the best, most appropriate housing for Jonah.  So I went to a required Front Door orientation about a month ago.  Mostly they talked about very basic stuff – what it means to be eligible, how to prove eligibility, how to access services – things we plugged into years ago.  Because it’s an adult service, though, some of the details will change.  Instead of an Individualized Educational Plan (IEP), for example, he’ll have an Individualized Service Plan (ISP).

And so here we go.  So far Andy and I have only decided that we will choose the best place we can, whether it’s near Albany where he once lived with us, near Rhinebeck where he lives now, or somewhere in between.  Aside from that, we’ll cross bridges and make decisions as we come to them.  It’s a 6-year transition for a reason; the system operates slowly, lists are long, and Jonah may change and grow beyond what we anticipate.  If we had to make such a decision today, it might be very different from one we’d make 6 years from now.  I guess we need to decipher the most likely trajectory and go from there.  We really are at the very beginning of the whole process.

To be honest, I don’t like thinking about it.  It would be easy to worry, to waste time imagining scenarios and outcomes, but what good would it do?  Best to educate ourselves about options and forge ahead.

But here comes Halloween time, and for the past two years this has meant Jonah’s behaviors get worse and he becomes very aggressive.  Last year he was so violent, he spent Halloween in the hospital.  And sure enough, it seems we’re in for it again.  Andy says not to worry, that Jonah continues to be good for him and on our visits, and he’s right.  But last week I got the dreaded email, on three different occasions, detailing dates and times during which Jonah needed take-down interventions.

I can’t even muster the hope that it won’t be another season of helplessness in the face of whatever’s making Jonah’s pendulum swing yet again.  I have to wonder if he has Seasonal Affective Disorder (SAD). He does have crying jags now and again that seem to have no cause.  I think I have SAD too, or maybe it’s just a reaction to Boo’s uptick in behaviors, but either way I face depression in the fall and winter.

My solution this year is to schedule more things with friends and force myself out of the house.  Almost always I end up enjoying myself, and getting out is healthier for my head.  It’s way too easy for me to “hermitize,” as I call it, staying inside virtually all the time unless I go to work or visit Boo.  Amazon.com and grocery delivery make it that much easier to stay in.  It’s no good for me to sit and dwell or go numb and listless.

As a result, I’ve spent more time recently with my sister Barbara (it still feels so strange to say my sister) or my friends.  I went to a beautiful mountain Oktoberfest with an old college roommate, drove over to friend KP’s house for food & a fire, that kind of thing.  It isn’t easy, honestly, when home feels so comfortable and the world seems full of obstacles and assholes.  This Saturday night I’m even joining a bunch of friends on an evening Halloween cruise with dinner and dancing (dear God and little baby Jason help me).  I’m going to fight this SAD if it kills me, both on my own behalf and on Jonah’s too.  I’ve been talking with his doctor and behavioral staff and they are raising his dose of Prozac a bit.  We want Boo to be happy.

I’m bracing for the storm that might blast us for a third year, but also embracing the good days, and feeling very grateful for every last one we get.

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There’s more to tell and it would be easier if I’d write here more regularly, so I’ll work on that too.  I just found more siblings – a younger half-brother and sister on my birth father’s side.  They didn’t know I existed, which is a whole lot different from finding my birth mother’s daughter, Barbara, who had been looking for me my whole life.

My new brother and sister both seem interested in at least emailing, which is more than I’d expected.   Given the situation, I won’t mention names or post pics.  I was born just days after our father married their mother, which doesn’t sound very good.  The last thing I want is to cause a rift in their parents’ long and happy marriage, so I’m going to let my new siblings decide how to handle what must be very shocking news.

Who’d have thought this only child would end up with so many sisters and brothers?  I wonder if there could be more even I don’t know.  Life throws curve balls.  I’m as ready for them as I could be, I reckon.

Here’s to a happy Halloween for Boo, and all of you!  I’ll keep you posted on that storm, if it lands…

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amazing grace

How sweet the sound of Jonah’s laughter!  What a gift to us this Thanksgiving Day.

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Against all odds Andy was able to drive him up with just a minor incident of aggression – and once at grandma’s house, Jonah was gleeful and good.  I stood behind him and snapped selfies of us…photo after photo because he was allowing it, because he was so happy:

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In this one he's drinking a swallow of black soda right from the 2-liter bottle. We were so thrilled we gave him whatever he wanted this day.

In this one he’s drinking a swallow of black soda right from the 2-liter bottle. We were so thrilled we gave him whatever he wanted to eat and drink this day…

...which included hot dogs, a breakfast sandwich, and cheese cake

…which included hot dogs, a breakfast sandwich, and cheese cake.

Andy and I took him to the railroad crossing in Voorheesville, his favorite place aside from grandma’s house.  Just after we parked, one train came roaring by, speeding fast, while another crossed it going in the other direction on the next track.  The two trains briefly shared the two track space and then the second train continued on, slowly, burdoned by a double stack of cars.  Jonah opened his window halfway and stared, slack-jawed with wonder.

Everything fell into place on Thanksgiving 2015.  We found the day’s missing puzzle piece and placed it, with time to admire the completed picture and be thankful for its beauty.

Whatever lies ahead, I will always be thankful for its beauty.

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I want to start a whole new blog, but life gets in the way.  Then again that’s not true either – we have time for what we prioritize, whether we admit it or not.

To be sure, my life has gotten busier.  I’m working a couple different PT gigs now and I just accepted a big writing project from Pearson, which will throw the rest of August into deadline mode.  But that doesn’t excuse me from disappearing; one does hate a dead blog.

So I’ll be writing more here, with all the other work going on, even if the new blog(s) of mine must wait.  Boo does take top priority, after all.

Sigh.  It’s been a summer of disinterest for Jonah.  Against all reason, he seems to have lost his love for the pool, although I’d bet money he’d jump in the new swimming hole/waterfall area I found.

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I mourn the loss of my little boo-fish and hope he’s not gone for good.  I wish I could take Jonah to the ocean again.  He was in his element there, and at places like the waterfall at Hyuck Preserve.  Maybe he just wants a natural water source.

Nowadays, when my mom and I drive down to visit with him at Andy’s apartment, he mostly asks for car ride.  Even wanna take a bath has fallen to the dominant desire for car ride.  I understand; he doesn’t get a lot of car ride at his residential school, unless they’re taking the kids bowling or something – and then he has to share the backseat.  Hell, he won’t even share the backseat of the car with grandma unless we’re on the short ride from his residence to the apartment.  He wants mama in the front and no one in back.  Sometimes when he wants car ride he’ll simply say mama in the front?

We’ve learned his language well.  We know what he wants.

Car ride is a specific loop Andy invented which passes through and around some of Rhinebeck’s historical sites.  Usually at some point during the ride we stop at a gas station where we let Jonah out of the car, walk with him to the mini-mart inside, and allow him to choose a treat (like a bear claw or a donut).  The lady in there knows us now – she’s friendly, and nice to Boo.  He nearly always agonizes between two or more treats before deciding on something.  Then, once in a while, he’ll ask to go back to the apartment.  Most of the time he just wants another loop.

Andy gets Boo out to go for a walk, at least.  We like to take him to the park where daddy pushes him on his favorite swing for a while.  After that we walk down the path to a school’s athletic track, where I try in vain to get him to race me.  He walks and cavorts at his own pace.  Yet all of it is dependent on Boo’s caprice, which he makes perfectly clear each time.  No park!  No park!  he’ll say, and then we don’t even try.  It wouldn’t be worth it to force the issue.

My mom always brings delicious sandwiches on croissants.  Jonah will eat one, after a fashion, by pulling it apart, re-arranging the pieces, and putting it all back together Frankensandwich-style.  Yesterday he wanted a frozen dinner as well – chicken parm.  We indulged him.  He doesn’t eat anywhere near the whole thing, and his choice of “dipping sauce” might gross you out, but I did catch the experience on video.

The story of this day has a really shitty ending, so maybe I’ll just skip right to that part now and make it the middle.

When my mom and I left to go home, Andy and Jonah were having quiet time on the big blue bed.  It was a great image with which to leave them:  Jonah and his daddy lying together… Boo snuggling in for a hug.  Mama leans over for soft kisses, inhaling the top of his head.  Goodbye, precious boy.

Off my mom and I go to our innocent oblivion, arriving back in Albany, continuing on with our days, a warm feeling nestled inside us because Boo was so very happy and good.

Later Andy called me and filled me in on the rest of the afternoon.  When it was time to bring Jonah back to his residence, Andy promised him 2 car ride loops.  Evidently Jonah wasn’t counting because when Andy announced loop 2 was done, Boo insisted this was not the case.  And the manner in which he insisted involved a quick Houdini-esque harness escape followed by climbing toward the front of the car, grabbing Andy’s hair, and yanking it — hard.  I didn’t ask whether Andy at least had time to pull over first.

And I didn’t have to ask what happened next — I’ve seen it go down so many times I can watch it like a film inside my head.  Jonah pulls hair with Herculean strength.  A wrestling bout inevitably ensues – Andy trying to keep Jonah managed and safe while protecting himself.  Andy is still the undefeated champion in these matches, but he comes away bruised, sore, and likely disheartened.  We know Jonah doesn’t always love going back to his residence, and sometimes he cries, but there also have been times when he asks to go back.  It’s a crap shoot what you’re going to get on any given day.

When Andy tells me the story on the phone it’s with a calm voice, relating the facts in a tone that seems almost rehearsed.  Not fake or phony.  Just repeated too often, maybe.  Perhaps a little hardened by the time of it.  Frequency x the passing days/weeks/months = A dull and radical acceptance of a fact.

Like at the airport:  The moving sidewalk is coming to an end. 

On August 16th, Jonah will have been at the Anderson Center for Autism 4 years.  It’s still the best place for him to learn and grow and become as independent as possible.  We still know we did the right thing.

It’s just….well, not speaking for anyone but me, I discern a cognitive plateau in Boo.  I find it hard to stay encouraged that he’s gaining any ground.  His learning happens at a snail’s pace.  But maybe I’m off the mark.  I can write or call his teachers and behavioral management specialists, but I know the answer they’ll provide:  a gently euphemized, politically correct assessment of his progress and its intended path, however slowly, toward gaining skills and learning things sans aggression.  I should contact them anyway, and I will.  But not now.  Not today.

So here’s the middle of my story, now the end.  As you can tell I’m always photojournalizing our visits, with a lot of snapping pictures of Boo from the front seat of the car.  In this 3-photo sequence you get to see:

A.  The light bulb of a “naughty idea” come upon his face, igniting a smile

B.  His delight at this idea and the beginning of its execution:  snatch camera from mama

C.  The resulting photo he took of himself shortly thereafter

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I adore his laughter, his happy, the moments during which he is bright and eager and fun – hatching ideas, trying to pull one over on us.

We’ve learned to accept whatever comes because we love him.  Do I wish there were a “cure” tomorrow, a magic pill we could give Jonah to make him neurotypical?  I don’t know.  Should I wish that?

I’d prefer an à la carte menu.  Leave out the aggressions & add more interests (in anything besides car ride).  A steady, if slow, improvement in skills and cognitive abilities.  Some Calm.  If I want to get greedy (and since this is an imaginary scenario, what the hell), I also want him to be verbal. Conversational verbal.

I hear Iris Holland screaming in the movie Mr. Holland’s Opus, stamping her feet and slamming the table for emphasis:  I want to talk to my son!

But it’s a dumb game, even in pretend land.  I cannot pick and choose my child’s traits, and to do so would be morally questionable at best.  I just want him to be happy.  How many times have I repeated that sentence throughout this blog, I wonder?  How many times have I repeated myself about other things as well?

If I have, I suppose I should apologize — but it fits in well with the whole repetition theme, after all.

Here are extra pics of Boo to make up for lost time.

I’ll be back soon.

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^^^ With Grandma in the waiting room of the JRA doc.  She brings him a breakfast sandwich and a lem-a-made.

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^^^ Daddy helping him out of his harness.  Buzz cut!

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^^^ He loves grandma.  Grandma adores him!

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^^^

“Childhood is measured out by sounds and smells and sights, before the dark hour of reason grows.”

~ John Betjeman

Perhaps Jonah shall never know the dark hour of reason. I think that might be okay.

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Mama in the front.

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“Up & down, up & down,
I will lead them up & down…”

~ Puck
Shakespeare’s Midsummer Night’s Dream

Would that it were a midsummer’s night!  Oh, how we upstate New Yorkers suffer when Spring officially arrives, because in reality She is always late here, and it all feels like some cruel joke.

Late March teases us with a day or two at 48 or 55 degrees; once in a while we’ll even get a 70 degree day (though not so this year).   Winter always manages to beat Spring back, dragging the season’s whole inevitable death scene out in a maudlin, uncouth fashion of day after day in the windy teens, the grey-skied twenties, the only-tolerable thirties.  I remember three damn different April Fool’s Day snowstorms in the last decade or so.

Enough is enough.  I want to go outside and feel warmth, see some green pushing its way up through sun-softened soil.

Jonah doesn’t care much.  He’s uncomplaining about cold or hot, except when it comes to his bath; like his mama, he wants the water at a temperature most people would consider near-scalding.  Mom and I visited Sunday this week, and Jonah was cute and good and funny.  We’re trying to teach him that he’s a different age now.

“How old are you, Jonah?” one of us will ask.

Using the language only people used to him can understand, he answers:  Um-twelll-yee-ol.

He never just says the number.  Always he adds “years old” to the end.

“No, silly,” I say.  “You had a birthday!  How old are you now?”

Evidently 13 is much easier for him to say because plain as day he answers, “thirteen.”  And without adding the “years old” part.

So much for always and never.

Jonah is Puck, leading us up and down through his challenging, “changeling” behaviours.  He has been attacking at school.  He has been fine at school.  He has been aggressing at his residence.  He has been good at the residence.   Tick, tock.  Yin, yang.  Up & down.

Is it puberty?

Regular teenager outbursts, “on steroids” because of his autism?

Questions.

How many angels can dance on the head of a pin?

Why does no one realize that the Alphabet Song, Baa Baa Black Sheep, and Twinkle, Twinkle Little Star have the same tune?

Can you be a closet claustrophobic?

How many licks does it take to get to the middle of a Tootsie Pop?
(The world may never know.)

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Digging his car ride.  I watched with pride as he dressed himself after bath time and deftly pulled on his coat, put on his hood, and zipped up.  Then I thought about how very strange it is to be so happy my 13-year-old boy can do something most 5-year-olds can do.  This strangeness will always be inside me, watching Jonah’s progress at its terrapin pace.

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He asks for “train on computer” and needs help getting the computer on and surfing over to You Tube, but once he’s there he’s getting better at selecting different videos on his own.  And when he can’t figure something out he’s super-excellent at asking for help:  I want help please? in his cute little voice.

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My handsome, capricious teenager.

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I started working on a new blog.  Here’s a first glimpse.  I’ll be adding actual content, soonish, and I’ll continue to blog here as well.

My mom and I have been switching the days we drive down to visit Boo from Saturday to Sunday, based on Andy’s work schedule, which is fine except it sure doesn’t help me remember what day it is.

This past Saturday we’d planned to celebrate Jonah’s 13th birthday.  I bought him a few little things (flash cards and small fidget toys) and my mom got him big helium balloons and a chocolate cupcake-cake with a singing candle.  We left the cupcakes in the car so Boo wouldn’t go straight for them without eating his lunch.

I was tummysick but pushed through (bad choice of words, Amy) and we arrived unscathed.  We opened the door to see Jonah coming in the room on daddy’s shoulders, piggyback, all smiles in his pajamas.  He’d slept at Andy’s the night before.  I don’t know how Andy accomplishes overnights with Jonah, but he does – and I have to give him a whole ton of credit for it.

Pretty early on in our visit Jonah attacked me, snatching and mangling my glasses, yanking a fistful of hair, clawing at my face — with no warning, for no reason.   It’s been a while since he came at me like that.  Andy managed him in the bedroom while I wrangled my pliable glasses and tangled hair back into shape.

I’m remembering it in shards.  Hard to articulate how it felt, what with me being sick on top of it, and Andy so tired, and my mom trying her best to thread us all together – to patch the pieces.

I remember helping Jonah with his bath, playing our kiss eye? & kiss lips? game gently, even though he had attacked me less than an hour ago.  He’d eaten a cupcake on the side of the tub and there were crumbs in the bath.  He allowed me to hang out while he splashed around in the almost-too-hot-but-that’s-the-way-he-loves-it water.

And when he was all done, I remember he wanted a piggy back ride out of the bathroom, wrapped in a towel.  Sorry, kiddo.  Mama’s not Wonder Woman.

I remember Jonah wanted my mother on his car ride, no mama, which was okay with me because then I could lie down.  And when they returned my mom went back out to the car to get Boo’s cupcake-cake and candle, and she brought it in to fix it for him, but Andy was keeping him quiet in his room after more aggressions.

Mom stood ready to light the candle, uncertain.  I watched, sick and disappointed — almost disinterested — from the couch.

All done?  All done?  Jonah cried, craning his neck around daddy to see his treats.

After a few minutes Andy let him leave his room, and my mother lit the candle, but she was the only one with heart enough to sing Happy Birthday to 13-year-old Jonah Russell Krebs.  Andy and I just kind of mumbled it.

But my mother always has heart enough to sing for Jonah.

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Where Jonah is concerned, the best place to be — the most dreamed of, sought-after, wondrous, asked-for place — is Grandma’s House.

For a variety of reasons, it has remained thus since he was a baby.  (Of course the best part of Grandma’s House is grandma herself).

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Jonah’s sitting on grandma’s counter in this picture, taken Christmas Day. I was sick and kind of weak; I tried to get a good picture of them standing side by side, but to no avail.  I wanted to show how Boo’s only a few inches shorter than my mom now, which would make him about 5′ or 5’1″ at not-yet-thirteen.  His growth seems to be happening, somehow, more quickly than before, as if I’d looked away for months and finally turned around to see him.

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I’m kind of wan in this pic, but Jonah’s all smiles.

Here are a few great pics we took in December:

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I love the way that last one came out, with all things notJonah softened.  It’s almost as if I knew what I were doing when I took the picture; ’twas luck, alas, and nothing more.  (For kickass-quality photography you can visit my sistercousin DiAnna’s website).

Then a few weeks ago Jonah started in a new classroom.  He was aggressing regularly in the other one, even on days when all seemed fine at his house.  His teachers and therapists thought maybe he was bored or unchallenged.  So far he hasn’t had a major aggression in the new room, so they were probably right.  I know Jonah’s bright, but it’s hard to know how much of that light we’re going to be able to coax from behind the clouds.  So far so good.

He’s been a happy kid, mostly, at any rate.  He adores his daddy and got to spend two overnights in a row at his apartment recently, which is right up there with Grandma’s House on Jonah’s list of preferred places to visit.

Lately Jonah’s developed a keen interest in his wardrobe and, more recently, in others’ as well.  He’s got two pair of sneakers at daddy’s place – one blue, one green – and he’ll tell you in no uncertain terms which he wants.

The other night Andy put him on the phone with me.  Jonah’s definitely not one to dominate a conversation, so I asked him a lot of questions he could answer with “yes” or “no.”

Eventually I said bye bye, Boo; mama loves you.  Jonah answered byebyemama and handed the phone back to Andy.  I heard Jonah ask twice: mama comin’ in? to which Andy automatically replied: 13 hours.

It seems to satisfy Jonah to have a number – any number – I think so he feels like what he wants is comin’…and when.

Then, in the background, I heard Jonah say:  Light green shirt? Andy answered no, buddy, This shirt is good.  I guess Boo’s new thing is to decide upon not only his own clothes but his father’s as well.  Sometimes Andy capitulates, allowing Jonah a glimpse into one possible career path toward fashion or wardrobe design.

I can just see him in Hollywood, pulling at a “wrong-colored” costume donned by Jennifer Lawrence, insisting no! no!

A few weeks ago I traveled to Bloomington to see Tim perform in a holiday concert with the Quarryland Men’s Chorus, which was as awesome as it could be.  Tim had a short solo in one song, and after both performances, audience members sought him out to compliment him.  I stood at his side, grinning proudly as if I were the one responsible for Tim’s mellifluous bass.

Tim's in the middle of the back row, with the long blonde hair & awesomely full beard

Tim’s in the middle of the back row, with the long blonde hair & awesomely full beard

Tim also gifted me with the best Christmas present I’ve likely ever received – but for now it’s just between us (and, due to my uncontainable excitement, two friends whom I swore to secrecy).

* 12-29-14 * NOTE:  Now lots of folk are guessing Tim gave me an engagement ring, and I’ll put that rumor to rest.  We’ve been in a long distance relationship for just 5 months.  And this gift is better, presently, than the prospect of marriage — to anyone!

We are happy.

We are happy.

And so life is good.

I am getting used to being cold, bundling up with resignation and maybe even complacency against my chosen 55 degree home temperature.  The no lights thing is actually more difficult – I go through candles like boxes of Tagalongs at Girl Scout cookie time, and I now have an oil lamp.  Since the days are so short, I want to go to bed at around 6 or 7, like an old lady.

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I get out every day, when I can motivate, and I fight winter blues/being alone/stagnation, reminding myself that every day now, the days are lengthening. There is much to do and plenty to look forward to with the excitement of this new year coming – 2015 rising like a glorious dawn.

I know the journey truly is the destination, and this one feels really right.

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I got to see Boo twice this week, which was awesome, and he was a happy kid both times, which was even better.

On Thanksgiving Day my mom had home-made all kinds of traditional dinner dishes and then, as she has been doing for several years now, portioned it out into containers for Andy and for me.  She’s an awesome woman and grandmother and mom, and I sometimes can’t believe what she will do for the people she loves.  Her heart is big, and full, and loving.

She even makes her father’s stuffing (my “poppy,” who died in 1999)  – an amazing and difficult concoction of deliciousness I can’t even begin to describe.

Andy brought Jonah up around 11:30am – Jonah’s always begging for “grandma’s house?” and so this was indeed a grand occasion.  We even had a beautiful day, for it had snowed the day before and there were 8 inches or so on the ground, white still newly-clinging to the branches and bushes against a happy blue sky.

Because we had our dinners packed up to eat later, my mom had also made sandwiches for our lunch.  Jonah, however, likes to search every compartment, cabinet and crevice for different and unusual food choices- especially at grandma’s house.   There was bacon in the freezer, cooked pieces my mom makes a few at a time and then stores away for later.   Once he saw that, Boo knew what he wanted.   If you listen carefully at the very end, he comes over to me and says “and the boobie,” evidently intending to fish down my shirt.  Not happening, kiddo.

He even got to see a train, on a car ride a few minutes after that video was taken.  Sometimes it’s not until I watch videos of Jonah that I realize his level of functioning (both below, above, and beyond others) and can see how very different he is from other children.  I don’t spend a whole lot of time with kids in general, and when I do, they seem like mini-adults or special other creatures who act and look like strange little beings with superskills.

This video from yesterday is an example, too.  Jonah listens to and likes what he likes, without shame or any concept of cool and uncool — none of that “these songs are for toddlers and I’m going on 13.”  I love it.  It’s all very loud; Jonah likes his music cranked.  In the video he says he wants black soda, but quickly decides to try and thieve both mine & my mom’s white sodas.  Having succeeded in making off with mine, the fun begins.

Oh, he is a funny, sweet little boy when he’s happy.  Lately he has been exploring a little more music but definitely has his favorites (his current favorite song is Prince’s Sign of the Times and he asks for it over and over by announcing its track number.

In this video from yesterday he’s jammin’ to Third Base.  He looks like a little gangster, silly Boo.

He hasn’t been great in school lately – more aggressions.  The school called me last week and said they were going to have a meeting about Jonah and whether or not it might be better to transfer him to a different classroom.  The concern is that he’s bright, and bored, and needs more to keep him occupied.  You shine like the sun, my son!  We’ll work together to get you the best schooltime possible.

We have a special relationship, Boo and I, for I am also unconcerned these days with what’s cool, and we rock and sing and love together.

OLYMPUS DIGITAL CAMERA

(I think he knows his mama is a little nuts).

Which brings me to my great winter experiment, by which I use neither heat nor lights.  I think I should start a new blog (or maybe a heading under this one) where I discuss things not Jonah-related.  So if you see a new tab up on my main page, that’s why.  If I had all day to write I would make five or six separate blogs about all kinds of things….

So anyway, for today I’ll just keep it here.  I have turned my heat up to 55, having been warned that it’s the lowest temperature at which I can set the thermostat to keep my pipes from freezing.  To be honest, though it is growing colder, I am used to it somewhat and I think I’ll be able to stick it out through the winter.

And I have added further restrictions to my self-imposed experimental wintertime lifestyle: I unplug nearly everything before going to bed or when going out.  I limit my use of paper towels;  if it can be done with a dishcloth, I use that instead.  I take hot showers less often (2-3 times a week instead of once a day) and set my washer on cold water.  No more using the dishwasher.  I’m selling my movies, books, cds on amazon and e-bay in favor of going to the library. (My precious books are the hardest things with which to part).  I get 10 minutes of space heater time during which I get dressed in front of it.

I’ve even caught some media attention from doing this, while trying to get press for Modest Needs.  Once they find out I’m living like this, that becomes the big story – which is fine with me.  At least I get them to mention Modest Needs as an organization helping people stay self-sufficient.  If my “strange & kooky” lifestyle helps that along — by selling papers or getting people to watch TV, I care not.  It all feels quite normal to me, this austere lifestyle I’ve chosen.  It’s not for nothing that Laura Ingalls Wilder & Dick Proenneke are my heroes.  Anyway I should be in the January issue of 518 magazine and also the Bethlehem Spotlight newspaper, thus far.

Call my crazy.  I don’t mind.  This kind of crazy doesn’t hurt anyone and helps me prioritize, to stay mindful of what really matters.

3 of us

My precious boy and me, with grandma watching o’er in the background.  (I’d include more pictures of Andy but he doesn’t like it).

Over and out for now, peeps.  Time to work. And on Friday, courtesy of Tim, I am flying out to Indiana to see him and the Quarryland Men’s Chorus perform an off-book (memorized) intense holiday concert.  My Tim has a solo and one of the best voices in the choir.

How proud am I?

happy couple locks of love

“They love each other…”

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