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Today Jonah is participating in Giving Tuesday’s coolest concept; our country as neighbors.  Modest Needs is a grassroots, BBB top rated national nonprofit existing to help those who need one-time assistance to jump a lifehurdle. People from around the USA help each other out of rough spots.

At Modest Needs, donors give what they can, and nearly 70% of recipients give back, becoming donors themselves.  This means even one moneycoin piece is exponentially impactful; the cycle of kindness turns unceasingly!

Jonah had limited moneycoin pieces, and wanted to give, and was very sad; I chipped in so he could help.  Today we’re going to join with thousands of others to make the difference in the lives of people who work hard to manage but are in danger of becoming impoverished due to an unexpected or emergency expense.

Will you please give just one moneycoin piece, for cute-even-when-he’s crying Boo’s sake?

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Jonah knows that any moneycoin is more moneycoin than before.

And please check out this awesome video they just released, featuring three families, one with a child who has autism.

Oh, and like it, if you do like it.

Thank you so much.

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Boo loves you and is happy again.

(Best of all, I get to work for the people doing this!)

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.

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(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…”

Holy cold.  The moment I announce my intent to go all winter without light or heat, I’m ready to drag out the space heater; it occurs to me I should ask a plumber just how low I can let my temperature get before I’m in danger of my pipes freezing.  The fact that this is all self-imposed hardly occurs to me.

It’s 50 degrees in my house right now and not even freezing temperatures outside yet.  My thermostat is still at 45 but I’m not sure that’s high enough.  I researched a little on the ‘Net but mostly there’s advice for people leaving their homes for the winter.  The fact that I run hot water to hand wash my dishes and take showers should count for something, right?  (That’s not a rhetorical question.  If you know, please tell me!)

I’m reading Laura Ingalls Wilder’s The Long Winter over and over, reminding myself of what she and her family survived through conditions far worse than my own.  I re-watch Alone in the Wilderness, a documentary about Dick Proenneke living alone for 30+ years in Twin Lakes Alaska, and hear his words echoing in my mind:  “It’s a toasty 40 degrees in the cabin today.”

I think to myself I can do this, I can manage.  I can “come out” of the cold to my car, or a friend’s house, or even the dreaded mall.  But it’s really hard to get out of my toasty bed in the mornings.  Manzo-kitty even has his own comfy blanket and snuggles next to me on the bed.

Yesterday my mom and I drove down to visit Boo.  On the way we listened to her new Barry Manilow “Dream Duets” CD, in which he has inserted himself into various deceased singers’ tunes – everyone from John Denver to Marilyn Monroe.  It’s kind of cool, in a slightly creepy way.  At least it wasn’t Sing Along With Mitch.

Oh, and it turns out they did find a train conductor costume for Boo to wear on Halloween, and he loved it.

Jonah, train conductor extraordinaire

Jonah, train conductor extraordinaire

One more reason to appreciate the folk at the Anderson Center for Autism.

I also found out they think his aggressions have increased in school due to some classroom staff changes; his aggressions at Birch House (where he lives) have stayed steady, which is to say mostly mitigated.

At least there is a reason, an antecedent.  It’s a huge thing for us…to be able to know why Jonah is upset.

At Andy’s apartment Jonah was overwhelmed, I think, by the variety & choices of items to eat.  Both my mother and I brought special items from Halloween with which to spoil Boo.  Usually he enjoys taking items we bring and putting them away – in the cabinet, refrigerator, or wherever else he deems they belong.  This day, though, he began to open up mini potato chip bags and chocolate cookie boxes and the silver-foil wrapped tuna fish sandwich, all before we could interfere and take most of the excess away.

Then he started scrolling through requests for things he didn’t have before him:  pot pie? pepperoni?  strawberry milk?  apple cider?

He was getting “squirrely,” as Andy and I call it, and so when I tried to calm him or help, Andy stopped me.  “Let me handle him,” he said firmly, as he often does.  Tears always spring to my eyes; while I know Andy is trying to protect me from a possible aggression, it is frustrating to have Jonah largely uninterested in me and at the same time be prevented from interacting with him – even if it is for my own safety.

On our car ride to get apple cider, I snapped one picture of him smiling and one of him imitating a strange skill I possess (of touching my tongue to the tip of my nose):

happy boo

happy boo

he's not as skilled as his mama but he tried

He’s not as skilled as his mama, but he tried…

And then a video of Jonah’s requested song:  Live for Love, by Prince…you can see his daddy handing him some lip balm for optimal comfort during Boo’s listening, rocking joy:

He’s got a new method and skill for selecting desired music.  He’ll say to daddy Wan take a picture? which actually means May I please have the case of CDs?

Then he announces the name (actual or self-invented) CD he wants, and selects it from the sleeves within the case.  Once he hands it up to daddy, he announces the number of the track he wishes to hear.  Sometimes it’s one simple request: number seven?  and other times Andy has to start at the CD’s beginning and Jonah will say number one? number two? etc. until he’s found (and will eventually memorize) the track number he really wants.

Although this new skill is impressive, it gets old when he wants one song from each CD, after having zipped up and handed the case back to Andy, requiring Andy to take it out and hand it over again – and eventually, inevitably, Andy simply suggests radio.  Usually this is cool with Jonah but once in a while he’ll confuse us with his rapid-fire requests:  Diamonds and Pearls?  – followed by  No Diamonds and Pearls?

And so once Andy suggests radio Jonah is usually resigned to his pop tunes by whomever-the-hell is cranking them out these days.  I’m a geezer with Top 40 and know barely any of the artists.   My tastes tend toward alternative (ex. The Pixies or The Elizabeth Kill), or classic (ex. The Beatles or Pink Floyd), or classical (ex. Mozart et al).  And of course, Guster, best of them all.

Suddenly I’m in a writing zone again.  Maybe November will be blog-heavy.  Who knows?  It keeps me warm, oddly enough – or at least is a distraction from the cold!

I did not end up going to see Boo today.  I am sneezing and stuffy, and yesterday I took my very first Boniva pill to stave off my osteoporosis.  I think I’m suffering a nasty-ass side effect of it with which I won’t gross you out.  At least I only have to take it once a month!

Hopefully the side effect goes away before the Jethro Tull show tonight my cousin B is treating me to experience.

Time to drink a hot beverage, do some jumping jacks, put in a movie and run in place, hold my hands over a candle, bake some cinnamon rolls (and open that beautiful oven door all the way afterward to release the heat), take a short drive with the heat blasted.  Anything besides sit still and f-f-f-f-freeze.

Hello from the hibernating hippie!

Hello from the hibernating hippie!

 

If I don’t write something today it will be the first blank month since I’ve started this blog.  I’ve got plenty to say but I don’t want to say it.  It’s that fantasy-land thinking – If I don’t put it down on record, it isn’t happening. 

Which is not to say that I am not incredibly grateful, somehow simultaneously with the strong compulsion to smash something and scream.  I am grateful for every day in this new life since I have decided to live on my own ~ and somehow found the truest love I’ve ever known within that solitude.

I am grateful for everything I have, all my family and friends, my dumb American material possessions, my shelter and my food…grateful for everything for which Jonah has been gifted – an incredible education, a safe place to live, teachers, caregivers, awesome staff, a safe and loving environment.  I am grateful.

In order to guard against complacency, I have made unusual life choices.  At first it was a game, just to see if I could make it to October 1st without turning my heat on.  Then I decided (in honor of Laura Ingalls Wilder and Dick Proenneke) to stop using lights as well.  I bought some soy-based candles and I bundle up, typing with fingerless gloves and pushing the idea of heat into November now.  I stopped using the dishwasher and I turned in my cable box.

Last night I turned on the TV to watch It’s the Great Pumpkin, Charlie Brown (on one of my three channels) ~ I’d forgotten how maddening commercials are.  And so I watch movies instead.  I still do laundry and shower in hot water, which is more than either Dick or Laura had, but I’m trying to eat by going to the store only once a month or so for fruit, vegetables, half and half, coffee, butter, and milk.  I’m eating out of my ridiculously full cabinets.

Now I’m thinking seriously of going all winter this way.  I live alone, so there is no one to hurt or annoy.  I wonder how long I can last; I’m a skinny, cold little thing so I won’t be arrogant enough to say I can do it for certain.  I’ve got my heat set at 45 so my pipes won’t freeze and neither will I.  It will be interesting to see what I’ll owe on my next National Grid bill.

I know I’m a weirdo.  One of my relative’s favorite mantras to me is Why can’t you just be normal?

Because normal is a dryer setting.

It’s the best answer I’ve got.  So why the hollow day?  Sigh…

Jonah has been aggressing more and more often.  Three incidents requiring two people take-downs just this week.  There is hope in that the incidents, which before came with no rhyme or reason, are now reactive to things like fire drills or too-crowded rooms with over-input of sensory activity (lights and sounds and noise and chaos, like last night’s Halloween party).

I don’t even know if I’ll get a photo of him in his costume (which was a aqua-man looking thing I found in WalMart; I hate going there).  I guess he wore it okay.  They told me he’d like to be a train conductor (believe you me he did not ask to be a train conductor, because he can’t make those kind of cognitive leaps).  It makes sense, though, the way my Boo loves trains.  But train conductor costumes top out at size 8-10, and Jonah is a 10-12 now.  Almost everything he’d wear, understand, or want to be comes in toddler sizes only.  I wish I had the know-how to put together a Halloween store for kids with autism and other disabilities.

And now it’s Halloween.  I have always loved Halloween and dressed up in costume (even with nowhere to go) right up until this year, when being alone seems to have taken the wind out of my sails.  I compare it to the first day of school or the school picture-sharing day, when parents show off photos and memories and happy shit about their adorable kid in his or her outfit/ Halloween costume, having more fun maybe than any other day of the year.

I hate it, and I hate that I hate it.

But I am not an angel and I am not a saint and I have these stupid, useless feelings of envy for these everyday joys denied Jonah, Andy, and me.  Andy is waaaaay better than me at not caring.

Yes, there are advantages.  I don’t have to go out in the cold with my Boo and bring him from house to house, trying to explain to people why he won’t wear his costume or say “trick or treat” — though, thanks to the Anderson School for Autism, he does now wear a costume, and they do take him trick or treating, and he does manage a discernible “trick or treat.”  Irony.

Then there are our visits.  When Grandma and Andy and I show up at Jonah’s house on his campus to pick him up, he is always waiting at the front door.

jonahinthewindow

He flies into his daddy’s arms for a long hug, then tells grandma what he knows she’s brought for lunch, and with nary a glance at me he runs off to the car.  Then he’ll say mama in the backseat? while shoving me as far away from him as possible.

I understand Jonah is daddy’s boy and I am glad of it.  And I do get hugs and kisses, sometimes, once we are at Andy’s apartment (another thing I am grateful for, that Andy and I get along well enough to share Jonah visits).  But he clearly is unattached to mama now, and there isn’t anything I can do but sell my home and move closer to him, to a small apartment, to spend more time with my Boo.  It is something I am considering – but I can’t spend time with him alone and would need to find someone to help me.

My boyfriend Tim could do it.  He is a direct care worker for individuals with autism and can do everything from restraining to administering meds when someone under his care is having a seizure, gently holding them and keeping them safe and as comfortable as possible.  Tim is a gentle, loving, caring soul ~ he has met Jonah once, got along well with Andy, and was unfazed when Jonah had an aggression…standing at the ready to help but at the same time unobtrusive and friendly.

But he lives in Bloomington, Indiana…and has his own three children.  I am here, and have Jonah.  We do our level best to see one another once a month and are so far successful, for we do yearn for the home of being together.  Next weekend we are meeting in Pittsburgh; it is a halfway point for us — and we’ve found a nice B&B and an aviary museum and science museum we’re interested in visiting, as well as nature trails near a lake and a river.   This weekend I will go see Boo both weekend days to make up for the missed visit the following week.

At any rate that’s what happening.  I am overjoyed and frustrated and ecstatic and sad in turns, but will meditate today and throw myself into work with redoubled effort, for after November 1 comes our fundraising push and media-story garnering at Modest Needs, where I work.  I have sought a second, part-time job, wuth no luck so far.

If you are interested in Modest Needs, a BBB top-rated nonprofit, please consider stopping by our website and donating even a dollar or two to help those living on the edge of poverty (but who make barely too much for public assistance) to give them a hand-UP through a hard month, or to provide their kids with holiday gifts when their families meet with unexpected expenses, or to help veterans return home and re-acclimate to society with rent help or assistance to pay a medical bill, etc. while they wait for VA benefits.

I’m so proud and happy to work for these guys.  I was a donor for 8 years or so before I started working for them in May of 2013.

I am blessed.  Writing this all out allows me to feel it strongly, palpably, fully.

Finally,  here are some recent pictures:

mama and her j

Mama and Jonah

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Introspective Boo

Jonah, chugging his "app-oo ci-dah"

Jonah, chugging his “app-oo ci-dah”

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And one of my Tim and me, sharing time during a recent visit when he flew to see me.  I am a lucky woman indeed to have found such a love.

May all of you enjoy a very Happy Halloween and blessed Samhain!

 

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 and 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

Sometimes blogging feels like tightrope-walking.  What to say, how to say it, what details to include.  There’s so much history here now.  Do I just tell a story, or maybe fill an entry with pictures?  What’s appropriate to put out there?  I usually just say what I’ve got to say, but sometimes it’s tricky.

If I’ve got an 8-second video of an 11-year-old Jonah with his wide, adorable smile, looking right at me and speaking clear-as-day:  fuck!  followed by my immediate response of laughter, is it cool for me to post that without seeming like I’m proud of it?  Hell, I laughed.  Sometimes you just gotta laugh.

The thing is I know (some of) who reads this blog, and I know if I say such-and-such it’ll get back to so-and-so, and then I have to decide how to tell my story or, sometimes, whether or not to tell it at all.

Andy and I have some unspoken tales of sadness and ennui that will likely never be told.  Macht nichts, I suppose.  Discretion, diplomacy.  I never was good with filters, so I err on the “sin of omission” side when necessary.  If I decide to tell a story I’m gonna tell the whole damn mess of it; I ain’t gonna sugarcoat it, so I better decide what I say with care.

Anyway.

On Saturday, somehow, Jonah managed to open (and set next to him) no fewer than three cans of white soda.  All this with three adults present.  Never underestimate Jonah’s quiet little conniving magic mind & abilities.

he's a quick little bugger

he’s a quick little bugger

It was Andy’s birthday, and my mom brought cupcakes.  Boo wasted no time in descending upon them.

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Skittles and Chuckles too.  Somewhere in there is some actual food – a tune-fish sandwich – which he ate with near-equal fervor.

I was happy to get a few cool pictures with Jonah, which has become kind of rare:

Me & Boo

Me & Boo

Me & Boo, Number Two

Me & Boo, Number Two

When he is calm and affectionate, our son is a beacon of the purest lovejoy.

In one short video, though, you can actually see Jonah’s agitation ramping up…he shows it using his hands and then finally with a swatting motion.  You’ll hear his dad reassure him:  It’s all right, buddy. 

The triumph is that he did not swat at anything but the air, just that one time.  We were all talking, and he was being told no, and he had so many foods from which to choose.  The videos sometimes make it easier to discern what’s happening and why.  Hell, the videos could very well be part of the problem, even.  That’s why I take them without him seeing me, if I can help it.  Sometimes I take the time to watch them carefully, try to learn from them.

This one’s just fun – lighting the candles on the cupcakes and Jonah gets to blow them out after we all sing to Andy (shaky harmony compliments of mama).

It was a good visit.  I hope Andy had a wonderful birthday; he deserves it.  Jonah’s had this whole week off from school and I think Andy’s picked him up for a visit every other day.  I always knew he’d be a wonderful father, before his child was even a notion.  He and Jonah share such a special bond.

Also, endeavoring to remain self-aware and true to myself, I have broken off my new relationship with Jim.  The reasons are many but none of them call into question his goodness, strength of character, or warm heart.  Some part of me wishes he could have met Jonah, for I think Jonah would have loved him – and I know Jim loves children.

I also am examining what I say in general – and how, and to whom.   These things can have a lifelong impact for good or ill.  I’d like to encounter everyone I see with a smile, to behave in a positive manner, to think before I speak – and when I do speak of others, to always find the good to say.  It’s so easy to say you believe in something and then never bring it into reality.  What you think doesn’t mean anything at all unless your actions match your intentions.

“If wisdom’s ways you wisely seek, five things observe with care…to whom you speak, of whom you speak, and  how, and why, and where.”  ~ Caroline Ingalls

Got to see my Boo twice last week – on Friday for his JRA doc appointment, and the next day, down in Rhinebeck with my mom.

He was a pisser at his appointment —  but also a weird thing happened both then and again today.  When they first called Jonah in for height and weight, he got on the scale and stood pretty still.  The nurse said “84 pounds,” and I was shocked at how heavy he was.  I mean, he looks skinny and lithe like his mama.  “Wow,” I said.  “When I was 84 pounds, I was in junior high.  And I was skinny!”

Not thinking. 

Not remembering, were Jonah a “normal” boy, he would be in junior high.  He would be  entering 7th grade this year.  To me he is my very little boy, my baby-est angel.   It is so easy to regard him as such.  Like when we lie down together on Andy’s bed, one near each side, sometimes holding hands, and we stare into one another’s eyes – he often sucking his thumb, for “quiet time.”  I think I will always have quiet time with my Boo.  In so many ways he will stay very little.  Can I listen as the watch unwinds?

This is where I suppose I am blessed, for other parents must lament the speed with which their children learn and grow, whereas I may yearn for Jonah to stay small physically, but the learning part is comparatively like molasses, and the rest of him is a poorly engineered roller coaster ride.

No lamentations from us about too-speedy entry into higher schools, middle to junior high to high school, high school to college – all the kids’ birthday parties, little league games, soccer mom hoopla (some of which I’m not sorry I missed out on, truth be told).  All the PlayStation (?) games at $100 each, the must have clothes, proms and clubs and nightmares, worries lies anxiety want-to-fit-in rebellion wisdom questioning making friends.  Jonah won’t have any of that, and usually I feel like that’s okay.  Maybe it means I was supposed to be his mama.

Is autism really just an internal trade, pure innocence for societal functionality?

Today I picked up my new migraine meds at the pharmacy, and the all-time awesome-est pharmacist was there.  She has seen me through all kinds of drama and tears, and we’ve talked lots about Boo.  She asked about him today, and I said,  “He’s good.  He’s loving music.  His two current favorite bands are Prince and Public Enemy.  As loud as it will go,” I added, laughing.

“Well he sounds just like a teenager, that’s for sure,” she replied.

Yeah.  Teenagers like to play their music loud, don’t they?

Earth to Amy:  Jonah’s autism does not define him.  He is also (nearly) a teenager.

Breaking it down and taking it back to the doc appointment.   Took a while for the doc to come in, so Boo’s two caregivers (J and P) and I occupied him through his mischievous, shriek-y, giggling wait time.

OLYMPUS DIGITAL CAMERA

I brought a package of tic tacs and immediately Jonah held out his hand.  “I hold it?” he asks, when you’re trying to give him just a little bit of something, or dole it out.

Yo yo yo, big pimpin', spendin' G's

Yo yo yo, big pimpin’, spendin’ the G’s. He cares little for paper money, though they’ve been teaching the abstraction of it all at his school and he is learning.

For the doc appointments I comply and hand him the container.  “I want help please?” he asks, trying to open the small box.  I open it and hand it back.  Immediately he shakes it up and down and back and forth, scattering every last tic tac around the room and on the floor.

Now he lazily seeks out approximately 1/3 of the tic tacs he has just scattered and places them back into the box or lines them up in front of him.  Doc says he is fine and we may want to talk to his retina doc to see if it’s time to titrate him off the methotrexate, and eventually, hopefully, the Humira as well.  Both docs are women and I stand in awe of them, so grateful to all they have done for Boo, for their kindness, their intelligence — even strangely, their beauty — as I believe it rises in those full of love and doing good in this world.

Saturday was a forgot-my-camera day, which is sometimes okay.  I don’t always have to play photojournalist.  Jonah wanted to watch train on the computer, loud as all hell.  He asked for freight train and since pretty much any railfanner video out of Voorheesville is of freight train after freight train, I just gave him a 45 minute video of that.  It was a typical-good Jonah visit, complete with swim-up lunch bar and car ride to transfer station. 

When I gave him his bath I even got him to sing some Guster.  He knows Keep it Together best, so I’ll usually begin “When we all….” and then fade out and let him take over.  It’s pretty cool how well he sings, both (mostly) in tune and rhythmically.  Here’s the “famous” video of him singing it when he was 7, on a rare occasion when he allowed me to film him at all.

I’m tired.  Almost no sleep last night.  It felt as though time were traveling backward.

“Listen as the watch unwinds….”

(from Come Downstairs and Say Hello)

by Guster

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