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Posts Tagged ‘Bloomington’

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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Jonah’s doing really well, aside from his word perseveration (cycling through nonsensical requests and phrases with conflicting messages).  Sometimes I think we should wean him off his meds and see what happens.  And that’s just what it feels like it would be – a roll of the dice, the spin of a roulette wheel.  Jonah’s not a chip in a poker game.  We’ve got to be as sure as possible that we’re doing the right things with his meds, and there’s no surety in it whatsoever.

It just seems to me that the meds might be causing the perseveration.  I keep thinking someone somewhere has got to be close to developing some kind of brain surgery to repair or regrow affected parts of the brain.   Like in Elizabeth Moon’s The Speed of Dark:  Lou, the high functioning protagonist, must decide whether or not to undergo a procedure to make him “normal.”  Lou’s decision surprised me, and the whole book opened my eyes to the struggles that people with high functioning autism face.

Autism can bite me.

Andy and I got Jonah’s 4th quarter report card today.  He’s working on things like taking an object and following directions to bring it to a named individual (maybe down the hall and around a corner), first stopping to knock and say “here,” probably — that’s likely the most they’re going to get out of Jonah — and then return to the classroom, having delivered the item.  I guess this kind of thing is where Jonah shines.

He remembers building layouts, street patterns, directions, etc. very quickly with a seemingly innate sense of where he is in the world.  And he also learns and recalls names, so he’ll get an A in Interoffice Communications 101.  (Actually, there are no letter grades.  Just 1-4, indicating how far along the student has come to reaching his/her goal in all kinds of specific things).  So this is Jonah’s forte.

I see mail delivery of some sort in his future.  Probably not the U.S. mail, but maybe he’ll be some interoffice Übermensch mail sorter at Microsoft.

Who knows what skills and talents will emerge from our amazing boy?

Who knows what skills & talents are inside Boo?

I forgot my camera last Saturday, so no new pics to share.  Last week the guy who seal-coated my driveway came back to clean out rubble, wood, & junk from when this other dude built my porch and left me with all the scrap.  I hired him because he gave me a great deal on the driveway, didn’t charge a lot, and was cool besides.  So the guy arrives and I give him leave to go through my garage.

He comes to the door a little bit later and he’s got this strange look on his face.  “All set?” I ask him. Uhmmm…Welllll….he mutters, obviously not wanting to say.

Then he’s out with it:  “Do you, um, collect squirrels?  Or bones?”

I look at him like he’s crazy.  “Wait.  What?”

“There’s a pile of squirrels in your garage,” he tells me.

“Auuggghhhhh!” I yell like a Peanuts character, my whole body shuddering.  And then:  “You jerk!  You thought I was a squirrel collector?”  I start laughing, and so does he, and I explain that it’s my damned serial-killer cat, Almanzo.  My garage door is manual-only and since Manzo’s a nocturnal critter, I let him out at night and keep about a foot of the garage door open so he can take refuge as needed.  He must have been ~gag~ stockpiling squirrels,  for the love of God.

“How come I didn’t smell them?” I ask.

“Oh, these are waaaaay past smelling,” he says with confidence.

Finally I request he show me, feeling like I was going in close to look at a car wreck or a deer shot dead.  So he pushes aside a few lawn & leaf bags and sure enough I notice two, uh, pelts right away.  That’s all I needed to see.  They’re gone now so good riddance to my pile ‘o’ squirrels.

I’ve had killer cats before but not serial killer cats.  I named the damn cat after an incredibly innocuous historical figure, for God’s sake; Laura Ingalls Wilder’s husband, Almanzo.

this innocent looking kitty

this innocent looking kitty

I’m missing Boo a lot but I get to see him tomorrow and I’ll be sure to bring the camera.  In my pictures folder I found all these videos of Jonah.  Here’s one I don’t think I’ve ever shared:

I should mention my new boyfriend, T, who lives in Bloomington, Indiana – a city so cool I never thought it could possibly exist in the Midwest.   We went to high school together, were in a few musicals and in chorus together (though he was also in the elite “select chorus” of the most stellar voices), and had been chatting on Facebook for some time.  I decided to drive out, kind of on impulse, to see if what we were feeling would translate to reality, though I really had no doubt.

The week was amazing.  The city felt like home.  We fell even more in love.  So now I live alone with my long-distance man.  He’s coming to visit me in three weeks, and then I’ll fly out to him in early December.  In the meantime I swell with pride, as if I manifested him – for he is, among other things, a night shift direct care giver to adults with autism, those just like my Boo but older.  On more than one occasion T has had to hold a resident in his arms all night during seizure after seizure, keeping his composure and offering compassionate care, no matter how tired he is — and he’s often very tired, as he puts everything he’s got into everything he does.

He’s also a geography professor, a bass in the men’s choir (though he’s got more than a 4-octave range) and the lead singer in a (mostly 80s) cover band, Don’t Call Me Betty.

I was trying to describe T to someone the other day, and I wrote:

I feel as though every tiny decision I have ever made in my life has led me to this sweet, loving, poetic, vulnerable, forgiving, brilliant, dedicated, sacrificing, fun, kind, honorable, humble, handsome, trusting, tactile, silly, singing, strong, self-aware, magical rock star king of a man. I’m grateful beyond words to have found him.

I kept going back and adding adjectives until it turned into the overly effusive paragraph you see above.  I am of the ridiculous and I am in love!

– – –

“All great deeds and all great thoughts have a ridiculous beginning. Great works are often born on a street corner or in a restaurant’s revolving door.
~ Albert Camus
Mama's Indiana Love

Mama’s Indiana Love

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