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puck

Posted in Anderson School, autism, behavior, grandma, language, sensory stuff, tagged , , , on March 23, 2015| Leave a Comment »

“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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patching the pieces

Posted in behavior, grandma, language, Uncategorized, Writing, tagged , , on March 3, 2015| Leave a Comment »

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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thanksgiving bacon

Posted in Anderson School, autism, behavior, grandma, language, The Anderson School for Autism, trains, tagged , , , , , on December 1, 2014| Leave a Comment »

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…”

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50 degrees

Posted in Anderson School, autism, behavior, grandma, language, music, Uncategorized, Writing, tagged , , , , , , , , , , , , on November 2, 2014| 3 Comments »

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!

 

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days of rain, eye doctor anger, and, at last, some sunshine

Posted in autism, behavior, doctor, echolalia, glaucoma, grandma, iritis, language, Uncategorized, uveitis, tagged , , , , , on June 15, 2013| 2 Comments »

Last Saturday I brought the big-ass pillow with us (the kind that you use as a backrest, with two “arms” on either side) and we successfully got all 4 of us in the car for a ride.  The pillow served to protect the backseat occupant with its bulk and punching-bag-like sturdiness.

The way we accomplished it was to put the pillow in the backseat right from the time we picked Boo up at the residence, and then after his lunch, we told him “we’re all going to the grocery store and grandma’s coming too.”  When he started to protest we reminded him that we’re going to buy chocolate donuts but only if grandma can come.  And by gosh, it worked.  He was even good in the car — he liked the pillow and rubbed it as we drove along.

Boo with his new grey pillow

Boo with his new grey pillow

a soft barrier

a soft barrier

I taped a small conversation we had along the way, though he’s parroting through most of it:

Overall it was a good visit.  At the store Boo successfully navigated the cart politely around other shoppers to the exact location where the beloved chocolate donuts awaited his arrival.  This Saturday we switched our visit to Sunday, so I will see him tomorrow, on Father’s Day, then come home in time to take my own dad out for dinner.

Instead M and I indulged in other plans, afterward ending up driving near Thatcher Park.  What a gorgeous day.

gorgeous day for it

beautiful

the bluest sky

the bluest sky

When we got home M wanted a nap so I took a walk alone to Buckingham Park and took some more pictures, then made some “nature art.”

Always there are ducks and geese, fish and turtles.

Always there are ducks and geese, fish and turtles.

I liked this little boy and took his picture as he watched a goose

I liked this little boy and took his picture at the park

I sat in the grass and I materials that were within reach

I sat in the grass and used materials that were within reach

On Wednesday Jonah had another follow-up appointment with the eye doc/surgeon.  It wasn’t a good visit.  I’m grateful that sometimes it is easier to handle Jonah’s outbursts/aggressions/whatever-you-wanna-call-them.  Sometimes they roll off me like rain washing river-paths along my body, navigating around my heart.  I don’t know why – I wish I could tap into those “sometimes” all the time.  Maybe it had something to do with the rain falling on us all week…

…but, at first, he was good.  Two care-givers from the school brought him up, so I felt more secure knowing they were there.  Still, I came armed with fruit snacks and a yellow octopus I’d bought ahead of time.  He liked both of these gifts.

all, at first, was fine

all, at first, was fine

He even smiled as she guided his head into the eye machine

He even smiled as she guided his head into the eye machine

She told us the pressure in his eye was 18 – nice and low.  She doubted herself and took the measurement again, and got 17.  She looked in his eye and said there was a lot less blood present.  We asked if he could go without the eye shield now but she said no.  This means he’s been wearing the thing for more than a month and has to keep wearing it for we-don’t-know-how-long.  Then she asked Jonah to sit back in the chair and he suddenly freaked, arching his back and standing up, his face melting into anger and sadness.

You can see one caregiver behind him and one in front.

You can see one caregiver behind him and one in front.

And yes, in case you’re wondering, it is awkward for me to whip out a camera at these moments to take a picture (all in the name of photo-journalism).  One more pic, and then I was required to enter the fray.

??????????????????????

Moments after this picture he bit N’s wrist, hard, drawing blood.  (The dude is about to retire; I bet he feels it’s none too soon).

After this we got Jonah down on the floor, where he thrashed, kicked, hit, head-butted…the usual whole 9 yards.  In the interest of protecting the two of us at his feet, I leaned in to take off his left shoe and BAM he thrust forward at the same time and kicked the shit out of my right shoulder and, afterward, scratched me up right between the eyes. (I never wear glasses around Boo anymore).  Eventually it took me, the two caregivers, and even the doc herself to get Jonah under control.

My tears were brief, and all for Jonah this time, whose face crumpled, desperately upset — innocent even in the midst of the aggressions.  The doc hadn’t yet done the ultrasound, which is an important part of the whole exam, but she made the wise choice to put this off, scheduling another appointment for a week away, making this coming Wednesday another anticipated & exciting attempt at examining his eye properly.

Then we somehow convinced Jonah that it was all over, that there would be no more doctor, that we were all done.  N was able to stand him up and guide him out of the office, holding both his arms.  I stayed behind to check out and make the next appointment.  Of course I could feel all  eyes on me, all the seated, (mostly) senior citizens who’d heard the screaming and carrying on, but I’m used to that.  What I’m not used to is what happened next with the elderly lady in line behind me.  I glanced at her and smiled, but she narrowed her eyes at me, the corners of her mouth turning sour-down in disapproval, shaking her head as if to say “what a shame you can’t raise a child who isn’t such a brat.”  Instead of shoving her over like I wanted to, I turned back to the receptionist, got our paperwork and appointment card, and quickly walked away.

Andy just called and said Jonah was good today, both with him and at the residence.  May tomorrow be a happy day too.

Happy Father’s Day to all the fathers out there, all the step-fathers, foster fathers, grandfathers, and people who act as fathers to others….to all the fathers no longer with us, to all the brand new fathers, and to fathers who are sick or alone, and to all the men who decided not to be fathers because they were mature enough to know they didn’t want to do it.

When it is Mother’s Day I usually also give a shout-out to all birth mothers who selflessly made adoption plans for their babies, but I don’t feel the same way about birth fathers.  Perhaps I should, but I just don’t.  At least not about the ones who don’t stick around long enough to see the whole thing through, and I haven’t heard about too many of those.   I couldn’t give a crap about my birth father…who he is, or where he is, or why.  At least my birth mother carried me in her womb and then had whatever it takes to watch as they took me away.

I miss my mom’s dad, who I called “Poppy.”  Jonah’s middle name is Poppy’s first name — Russell.   He died just after I’d gotten engaged to Andy.  I wish I could have known my other grandfather, my dad’s dad, but he died when I was a year old or so.  He was a deputy fire chief in Albany, and was just 57 when he passed away.

I honor Andy as our son’s father, and I’m looking forward to honoring my own father too, by spending some time with him and taking him out to dinner later in the day.

It has been good.  I feel like I can handle things.  And I’m grateful for that.

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bruce banner & boo

Posted in autism, behavior, doctor, echolalia, glaucoma, language, Uncategorized, tagged , on January 17, 2013| 4 Comments »

Andy called me this morning to remind me about Jonah’s glaucoma appointment with Dr. S.  

I’d totally forgotten about it so it’s a good thing he did call.  E and J brought Jonah up and I met them all at the office.  We always wait in the hallway because the waiting room is full of mostly 60-90 year olds, and Jonah could take every one of them down if we didn’t stop him.  Bruce Banner turned into the Hulk; Jonah turns into the Tasmanian Devil.

Wikipedia describes Taz as a dim-witted omnivore with a notoriously short temper and little patience. He will eat anything and everything, with an appetite that seems to know no bounds. He is best known for his speech consisting mostly of grunts, growls and rasps, and his ability to spin and bite through just about anything.

Yeah, that sounds a little like Boo.

He was all ramped up today when I first got there, and I’d already stashed my new glasses in the car, so I was literally going in blind.  Luckily he was lovey, and though he answered “no” when I asked if he wanted to sing a song, eventually he capitulated and took turns singing lines of Fa Fa and Keep it Together with me.

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He wanted to touch and knock at the pictures hanging on the wall.  Quiet hands, Jonah, we told him.

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He sat patiently, for the most part.  Then he’d get up, walk in a circle, and sit down again,

J is holding both of Jonah’s hands and rocking back and forth with him, telling Jonah silliness that Jonah loves to repeat…we had to wait for a little while and Jonah was getting impatient.

When the nurse tested his vision, he held up the little black plastic thingee that covers one eye and read what he could.  He’s fine when he can use his right eye, but his left seems much harder for him.  He gets frustrated and tries to cheat.  When redirected he becomes angry, maybe throwing the plastic thingee or hitting the nearest person.  But today he just gave a half-hearted swat into the air and allowed the doc to examine him.

“Okay, buddy, sit on your knees,” says the doctor.  Jonah just sits there.  J and E try to help explain it to Jonah, who then rises until he’s standing on the chair.  Finally J and E have to help Jonah into a kneeling sit so Jonah can scootch himself up and into the eye machine, miraculously cooperative of bright pins of light, strange machinery, a doctor telling you to look this-way-then-that-way, eye drops, and a gadget that touches your eyeball and take its pressure.

Amazing.

M & I took tomorrow off work to travel downstate and see another Guster show; we’re staying overnight, then M will drop me off at Andy’s on the way back.  After our visit with Boo I’ll hitch a ride back to Albany with my mom.

Sounds like a sweet plan.  I think the amount of times I’ve seen the Grateful Dead and the amount of times I’ve seen Guster must be about the same now.  Something like 18 each, maybe.  I wonder if I’m the only person who was first a Deadhead and then a Gusterrhoid.

The thing is, every show is different – every show a re-energizing.  I’m excited to see them.  And Boo.

(He’s kind of re-energizing too).

O

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97X. Bam!

Posted in behavior, echolalia, grandma, language, Uncategorized, tagged , , on November 23, 2012| 2 Comments »

Raymond:  97X. Bam!  The future of rock ‘n’ roll.   
97X. Bam!  The future of rock ‘n’ roll.  
97X, Bam!  The future of rock ‘n’ roll.

~ Raymond Babbitt in Rainman

Oh, my sweet, precious little boy.  What a wonder you are!

This is the third Thanksgiving I’ve described in this blog.  Hard to believe..  The first was awful – so awful, in fact, that just days later I would check myself into a mental health facility, the second was fun (and was paired with two Guster shows, so how could one go wrong?), and yesterday, Thanksgiving 2012, which was easy-wonderful.

Andy was nice enough to drive Jonah up to Grandma’s house, and I met them there.  My boo came crashing through the front door, shrieking with happiness.  We ate turkey sandwiches; Jonah ate one and a hot dog as well, and chips, and bacon, and “white ice cream.”  He asked for train and we drove him there even though we knew Thanksgiving trains are few and far between.  All the way there my mom sat in the backseat with Jonah, but he kept asking mama in the backseat?  And my mother told him, “yes, sweetheart, as soon as we stop for the train.”  It made me feel good; usually he wants grandma in the backseat.

He also wanted music, and daddy turned up this station that he and Jonah enjoy: 92.3 FLY.  After one of the songs they announced the call station with snazzy-jingle-music and the deep voice and all.  Jonah immediately parroted it, really well, too, if I don’t say so myself.  92.3 – WFLY!  92.3 – WFLY!  92.3 – WFLY!  None of us could help laughing, which only encouraged him.  Giggling, he kept at it for a while, just like Rainman.

So there was no train, but I got to sit in the backseat with my Boo – and instead of telling me move (which means get as far away from me as possible and do not even look at me), he asked for hugs.  Over and over again he wanted hugs.  Bear hugs, he even said.  And so I reveled in this, moved close to him, wrapped my arms around him, and hugged tight, raining kisses on his Beatle-length hair.  More bear hug?  he pleaded, looking up at me sweetly.  Yes, Boo, I replied, hugging him closer, tighter, until it felt like we were one.  Oh thank you, I said silently.  Thank you.

And this week I get to see him again – tomorrow, which I hope will be as beautiful as today – and Jonah as lovey.

daddy-hugs

Before Andy and Jonah left, they came inside to get their share of a Thanksgiving dinner my mom had made just for the few of us.  So she had a bag with all their food in it, and Jonah and Andy were saying goodbye, when Jonah opened the freezer, snagged the rest of the bacon, put it into the bag of food, then looked up at us all as if to say “k, let’s go.”  Of course grandma let him take the bacon.

Mom and I had coffee afterwards and laughed at Boo’s adorable little ways.  We both had tears behind our laughter, but they were mostly good, happy, thankful tears.

We’ve plenty to give thanks for, that’s for sure.

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dear boo

Posted in autism, behavior, doctor, hospital, iritis, language, placement, The Anderson School for Autism, uveitis, tagged , on November 8, 2012| 3 Comments »

Dear Boo,

Mama is so sorry, sweet angel, but it looks like you are going to need another eye surgery, and soon.  See, the one they would normally do requires the patient to avoid touching the eye for two weeks, and we know you can’t do that, and we can’t explain it to you, so we have to try something else, and these laser eye surgeries are the something else.

This might not even be the last surgery.  The surgeries aren’t helping so far, and what we’re trying to do is make sure you can continue to see.

People with autism are usually visual learners, and you seem to be one as well.  Thinking in Pictures by Temple Grandin explains this somewhat, and if you could read it I would give it to you and see if you agree.  I don’t really even know if you can read.  They talk about the sight words you know, but even illiterate people know what the STOP sign says.  I don’t know if it matters that you can read, even.  Sometimes I wish you understood more and sometimes I am grateful for your ignorance and innocence.

Have the eye appointments and surgeries become part of your normal?  I guess they must be, by now.  You tip your head back for the eye drops like an expert and read the eye chart like a brave little man.  You are as patient and tolerant of the neurotypical people around you as you can be.  I have no idea how difficult it is, to be surrounded by people who do not understand you.

I’m so sorry, sweetheart.  Mama and daddy are doing their best to make sure you are not in pain, that you have eyes that are healthy, a strong little body, and a calm, peaceful, happy mind.  I’m sorry you don’t have many of those things and I’m sorry there isn’t anything I can do but trust and pray and hope.  I can research, and listen to my instincts.  Hold you close for as long as you’ll let me.  Breathe you in.

You amaze me, Jonah Russell.  Daddy and I will do the best we can for you, for as long as we live.

Mama promises.

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haiti & the harvest festival

Posted in Anderson School, autism, doctor, grandma, iritis, language, placement, Uncategorized, tagged , on October 21, 2012| 1 Comment »

Yesterday was Harvest Fest at Jonah’s school.

I did something very similar to my dorm room door, junior in college – only we glued real leaves to the wall…

We visited his classroom and spoke to his teacher, who gave us a folder full of Jonah’s work sheets and art, then told us Jonah has good days and bad days, which is teacher-euphemism-talk for he’s really difficult, randomly, and it’s frustrating. He is one of the most verbal kids in the class, so they don’t use PECS with him anymore.  I guess Jonah has a vocabulary of sight words and he really loves occupational therapy.  His teacher is young, pretty, and interested, with a sharp mind for noticing important things and a kind heart to care about the children.

There are teacher’s aides as well in the class, and occupational/behavioral therapists, and art/music teachers, and they all work together to educate these mysterious children like my Boo.  Amazing.

What a beautiful day, too, sunny and warm and autumn-pretty – after visiting the school, we walked to Jonah’s house and then to the recreation center, where they had bouncy bounces set up, grills cooking up yummy food, and activities for the kids.  We waded through the groups of kids and teachers until we found Boo.

They’d actually managed to get him to wear this headband with two curled black pipe cleaners and red leaves on the end of each one.  He used to hate stuff on his head — hats, hoods, Halloween costume accessories.  When or why or how this changed, I have no idea.  In some ways Jonah is very malleable; he morphs almost magically into a different kid, one little corner of his brain making seemingly arbitrary decisions in matters of head coverings and food preferences, who he requests to be with him in the backseat, what he wants to drink:  appoo ci-der?  milk?  cranbewwy soda?

When we caught sight of him, he was standing next to one of the picnic tables and seemed to be doing okay, but as soon as he saw us, he wanted out.  And so he got a bear hug from Pa (my dad) and then my mom and Andy and I brought him to Andy’s apartment.

Jonah’s newly renovated house – Jonah’s window overlooks the playground behind it, and the pool behind that.

Jonah leads the way to the car.

Jonah being silly as his dad helps him with the car harness

When we’d completed our usual tour of bath, lunch, and car ride, Jonah requested the “grow-shee-store?” At the self-checkout lane Jonah started screaming in what I can only describe as “obnoxious joy.”  I told Andy to go ahead and take him out while I weathered the stares (usually Andy’s privilege) and paid for the food.

And after we’d been back at the apartment for a while, my mom and I left.  My car drove us home okay, but when I tried to run to the grocery store later in the day, the steering wheel was shaking and the car pulled heavily to the right.  I guess tomorrow I’ll have to drive it (gingerly) to the shop by my work and leave them a note with the keys.  Sigh.

I was just thinking:  It has been a long time since I cried over leaving Jonah behind each week.  I don’t know what that means, if it means anything at all.

I will also tell you this little not-about-Jonah story:

With my favorite pastor ever (the recently retired Father Noone) I’m joining a committee to support a school being built in Fontaine, Haiti.  Father went to Haiti and helped cut the ribbon on the opening of the first three grades.  The money needed to build the school (and, before that, a well) was in large part funded by special collections at the church from which Father Noone retired.  And now, that same church has explained to Father that, due to financial challenges, they will be unable to continue to support the Haiti project except for a second collection twice a year (or something equally lame).

Disappointment at this decision aside, I am helping Father Noone raise the money needed to keep the 105 students there for another year.  It’s just $300 per child.  That’s $25 a month for a year.  Or, as the commercials like say, “for just pennies a day” — but it really is true.  Hell, you could spend $300 just buying school clothes and supplies here in the states.

These are children who would otherwise have to walk 4 miles a day round-trip to school in another town – in a country whose villages have no electricity nearly three years after the 2010 earthquake.  Unimaginable.  Try to picture that happening here, how enraged we would all be.  Hell, I remember an ice storm some years ago and being frustrated at its four day interruption of my normalcy.

Anyway, if you can help (in any amount), please click on the link and donate from there.  If not, I’ll never know.  I wouldn’t judge even if I did.  Every cause wants money.  I just want to help Father and this school he believes in as much as I can.  This quote by a wonderful author (who had to write under a male pen name to get published) describes Father Noone perfectly —

“In spite of his mildness and timidity in reproving, every one about him knew that on the exceptional occasions when he chose, he was absolute. He never, indeed, chose to be absolute except on someone else’s behalf.”
― George Eliot, Middlemarch: A Study of Provincial Life

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video killed the blogger mom star *

Posted in Anderson School, grandma, language, swimming, The Anderson School for Autism, Uncategorized, tagged , , , , on August 2, 2012| 7 Comments »

* I’m not trying to call myself a blog star (did I coin a new phrase there?), but rather to give a small nod to the first video ever played on MTV.  Almost-twelve-year-old me was there to watch it all go down, and damn it was cool.  August 1, 1981 – we just passed MTV’s 31st birthday.  Video changed everything.

It still does.  I don’t know what it is about watching the video of Jonah in the last post, but I watch it & watch it & watch it again.   It’s as if the video allows (forces?) me to step outside myself, seeing Boo through a stranger’s eyes.  I can describe him until I’ve written a doctoral dissertation –but only the video can really show you his abilities, both excellent (swimming & his sense of humor) and not-so-excellent (lack of communication, and inappropriate noise levels).  Watching the video is different than the living of it.  Different scary.  Different real.  Or surreal.

How do I explain what I mean?

He’s ten years old.  He’s my baby.  Too soon to be an adult and, watching that video, I became afraid of all that means and how soon it is coming.  In fact it’s speeding up, as time does when we age somehow, and if I’m not careful I will worry in a million ways which will only waste time.

Operating under the assumption that I’m not involved, would I whip out my camera to film him aggressing and post it here?  I want to say yes – but I don’t know.

Anyhow, I found older snippet-videos, most of him swimming last year.  Here are two:

In this first video we see I am trying to take a photo of Jonah (who very accommodatingly smiled wide for the camera) and then realizing – duh – I have the setting on video.

In this second one you can hear him say “all ny-uh” – which used to be his way to say “all done.”   Now he just says “all done.”  He has come a long way at Anderson.  It happens so quickly, all of this everything.  Sometimes I feel as if I’m in slow motion, watching it speed past me.

For once this writer doesn’t know what to say or how to say it.

(Like that hard as hell Spanish course I’m doing on Rosetta Stone.  They make you say words when you don’t even know what they mean or how to use them.  I say the words over and over and over sometimes before they let me go on.  Never do you know the meaning of a word.  It’s all pictures, and repetition, letting you in on the secret of Spanish 0h so frustratingly slowly. 

Then you have to spell words correctly, accents and all with this keyboard tool they give you.  Then you have to hear the differences between ridiculously similar ways to pronounce two completely different words, like the words for baby and drink.   I have to admit, in English there are single words that mean different things.  Rose.  Lash.  Stream. 

Those are just off the top of my head.  Does Spanish also have this?  Am I even capable of learning it?  I forget all the words.  I don’t understand why it is “Tengo frio” (sorry, I don’t have my accents handy) and yet “Estoy hambre.”  If I’m even remembering that right.  One means I am cold and one means I am hungry, right?  Or no?  When do you use tengo and when do you use estoy?  And why?) 

End of rant about learning Spanish.  But if you know the answers feel free to chime in.  Por favor!

In exactly one month I will no longer be the answer to the universe.  (Unless I die before that, in which case I will always be the answer to the universe).

We’re coming up on the first anniversary of Jonah’s going to Anderson.

I miss him a lot tonight.

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