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got to get in to get out

January 20, 2013 by The Never Normal

“The walls are painted in red ocher
and are marked by strange insignia,
some looking like a bulls-eye,
others of birds and boats.
Further down the corridor,
he can see some people; all kneeling.

The carpet crawlers heed their callers:
We’ve got to get in to get out
We’ve got to get in to get out
We’ve got to get in to get out.”

~ The Carpet Crawlers, Genesis

I dreamt of strange, vague, nightmarish, nondescript apocalypses, of dying people everywhere, irradiated, burning from the inside out.  Of Andy and I trying to get to Jonah.  It’s hard to breathe, see, or hear.  All food is gone, and the sun is obscured by black falling snow.  The car is on empty and finally stops, and a landslide of mud and logs is coming at us, certain death, and I’m trying to handle that but then suddenly we see Jonah in a huge pool.  A police woman tells me sternly to remove him from the pool.  “There are carpet crawlers on his raft,” she explains, and is gone.  Andy and I climb in the pool with Jonah, and Jonah reaches out to grasp one each of our hands, sliding off his raft.  He pulls us down to the bottom and we can breathe the water and see just fine and are no longer hungry — and the carpet crawlers are, after all, only on the surface.   Then, slowly, the water drains, and we drown gasping in the air.

This following the Guster show Friday night at the Capital Theater in Portchester, NY.  Maybe the significance is we had to sit next to four drunken assclowns who drank and drank and drank, laughing and talking through all the songs because dammit we were in the wayback (second to last row balcony) and they could get away with their obnoxious douchebaggery.  The girl with the Coach bag asked me to watch her coat in between drinks.  I wanted to say “You think there are coat thieves back here in the balcony of a Guster show?”  Her steroid-large boyfriend paused his constant texting after every song to hoot and holler, laughing.  Why are you HERE?  I wanted to ask them.   Sigh.  I’m getting old.

But then the music took over and I forgot about wanting to punch the moron.

It was an awesome show.  I even got a few decent pictures from my far-distant perch:

Ryan and Luke

Ryan and Luke

April, Charlene, Adam, Ryan, Luke

April, Charlene, Adam, Ryan, Luke

Brian, under spotted light effects

Brian, under spotted light effects

Dwight Yoakam? Isn't that the country singer who played Dole in Slingblade?

Dwight Yoakam?
Isn’t that the country singer who played Dole in Slingblade?

I dislike Westchester.  Lived there for a year.  But I had to get in to get out.  That night I had the carpet crawlers nightmare.

Next morning M dropped me off at Andy’s, where we met my mom and drove to pick up Boo.   Everything seemed in slow motion – even Jonah, who was more subdued than usual.  Even his lone aggression, aimed at Andy, fell short of notable.  I brought Guardian Gus the ScareMeNot for Jonah to hold, and all was right with the world.

O

Later Jonah took a bath and put his head right underwater.

Later Jonah took a bath and put his head right underwater.

It reminded me of that creepy dream, but we had a good day and Boo was, for the most part, a very good boy.  I hugged and kissed him soundly several times without suffering any consequences.

When I got home M and I took a long nap and then stayed up til almost 2am.  Today feels like it should be Monday (because we took Friday off) but then neither of us has Martin Luther King Jr. Day off.  It all balances out, but today I’m cooking homemade something and relaxing to episode after episode of All in the Family (speaking of Martin Luther King Jr. Day).

Watch my favorite part of my favorite episode.  I can watch it over and over.

‘Twas a good weekend.  I am appreciative.

Posted in singing, swimming, Uncategorized | Tagged , , , , , , , , , | 1 Comment »

bruce banner & boo

January 17, 2013 by The Never Normal

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

Posted in autism, behavior, doctor, echolalia, glaucoma, language, Uncategorized | Tagged , | 4 Comments »

so far so good

January 13, 2013 by The Never Normal

So far so good today.  I am home and took a pic to show you my progess. Much better today, no?

O

Perhaps tomorrow I will actually look presentable for work.

M is better too, and so is Jonah, so far.  Andy picked him up this morning for a visit.  I hope Jonah has fun and is non-aggressive.  I hope they can go for a walk somewhere in the warmish air.  I hope they are happy together and there are no problems gt all.  We’ll see.  I have to learn not to expect too much. 

Radical acceptance is really quite radical.

I’ll keep you posted.

Posted in autism, behavior | Tagged , | 2 Comments »

ataque del corazón y el chico

January 12, 2013 by The Never Normal

I felt like doing the title in my poor Spanish.  It’s supposed to say “attack of the heart and the boy.”  I like it better in Spanish, even if the Spanish is wrong.

I promised pictures.  

Here are birds sitting on the iron fence outside Albany Medical Center at 8am this morning, undisturbed by my close proximity. 

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I like to count birds on wires and fences, but I was too tired and too freaked to count them this time. 

M was woken up at 6:45am this morning with bad chest pains.  I urged him to go to the hospital and he only resisted briefly (he must, I suppose, as he is a man) before capitulating and letting me drive him to the ER.  He could walk but was a little short of breath and still in pain, like a hard push on his sternum, he said.  I sat with him as they gave him an EEG, which looked normal, and a blood test.  He wanted me to go see Jonah anyway and since he wasn’t in crisis, I left my car there for him and my mom picked me up to drive to Rhinebeck.  I had only had time to roll out of bed and pull on clothes, so I looked like hell and was tired and worried.  (They are discharging M as I type so he will be home soon).

So my mom drove her car down, and she waited in the car when Andy & I walked to Jonah’s cottage house.  He was happy and smiling when we arrived.  I waved to him through the window and he waved back.  He wanted my hand, my hugs.  It felt good.  We gathered his things.  Andy and I spoke briefly to a few of his careworkers and then walked out the door, Jonah grinning wide and holding my hand.  “Hug?” he asked sweetly.  I leaned down and hugged him, and the next second my face was on fire with pain. 

He’d let go of the hug and taken one hand, starfish-wide, and gone lightning-fast for my face..  He wasn’t letting go, either, and he’d managed to dig in tight.  When Andy got him off me, one nail raked a good scratch just below my eye.  I have no idea why I’m sharing this mugshot picture – I mean, I don’t know when I’ve ever looked this bad.  It actually looks like one of those “after” pictures when they show what crystal meth does to a human.  What a long, strange, stressful, hurt-y, crappy day I’d had by noon.

O

                 Mama’s Mugshot

It makes no sense.  Why do I need it to make sense?  I could understand if he was told to do something he didn’t want to do, or to go somewhere he didn’t want to go, but he wasn’t.  He was happy.  Lovey.  It just doesn’t make any sense.  Maybe when he saw me he got mad because he was simultaneously happy to see me and also thinking why the hell do you come get me once a week and then leave me here!?  I hope to God it’s not that.  Would he forgive us if he could understand what we did, and why? 

Eventually Jonah calmed down.  I still think he’s a little under the weather.  He wanted bath and had tune-fish sandwich and car ride to the transfer station and he got all of those things.  He was surprisingly uninterested in train or park or anything else especially fun.

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M is home now and his kids were supposed to come visit this weekend but now that’s out of the question.  They wanted him to stay overnight at the hospital and he wouldn’t do that.  They ran a bunch of tests and say he’s okay. 

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I’m tired and am going to take a nap.

Posted in Uncategorized | Tagged | 5 Comments »

a questionable improvement on the silence

January 11, 2013 by The Never Normal

“Before you speak, ask yourself – Is it necessary?  Is it true?  Is it kind?  Will it hurt anyone?  Will it improve on the silence?”
~ Sri Sathya Sai Baba

How hurtful we can be without meaning to be.  You’d think I’d be used to being hurt, both physically and emotionally, but I’m just not.  And ’tis a horrifying thought to know I also have spoken quickly, without thinking, without asking myself these questions.  We all do it, I imagine.  This quote is so wise, whoever Sri Sathya Sai Baba is.  I learn lots by researching the person who uttered a quote I love. 

I saw Jonah on Wednesday at Albany Medical Center for his pediatric rheumatologist appointment.  E and J are back as the team who drives Jonah to and fro, but they do so much more than that, as I’ve mentioned.  I love these people and look forward to seeing them almost as much as I look forward to seeing Boo.  He did well at the appointment, mostly, but part of that was due to the caring doc’s speed and efficiency.  No waiting.  None.  We go straight to a room and as soon as she sees him, Dr. B is on her game and handling everything.  It’s refreshing.  I don’t know how she does it, but I’m more grateful for her than she will ever know.

I should have taken pictures but I keep forgetting my camera, or forgetting to charge my camera, so I’ll end the post with some more random pictures.  I like putting pictures in my blog post.  Tomorrow I’ll remember the camera when I go visit Boo, I promise.  I wish I had it at his doc appointment.  He was parroting in classic echolalia form.  “Jonah, sit on the table.”  Over and over.  He’d had enough at the exact moment she finished gently pulling and prodding his joints.

There are so many things I wonder about my boy.  I know the other kids like to cuddle with the caregivers on the couches and watch TV or play Wii, but Jonah doesn’t like it.  I know that much.  He wants to stay in his room a lot.  They coax him out when they can, it seems.   I hate thinking about him alone in his room.  If that’s what makes him happy, should I be more okay with it? 

I wish I knew more about what he likes to play with, and who he wants to be with, and things he says/does/sings.  They don’t tell you a whole lot beyond basic information but I want anecdotal stories.  I want to hear about it when he does good things, or funny things…not just whether or not he had “behaviors” that day, or how many, or what he had for dinner and whether or not he threw his plate.  I want to know more about my son. 

I know he is sick right now and I want to hold him close and let him lie on me and suck his thumb while we watch Barney or the Wiggles.  Of course I just described a fantasy.  Even if he were here in my home that scenario is highly unlikely, unless he were really, really sick.  He’d hit at me, pull my hair, scratch my face.  Is he angry at the world?  Is he angry at us all because we just don’t get it, whatever it is?

Some weeks it’s easier to have gratitude than others.  Sometimes I don’t sit down to add a blog post until I’m motivated by a hurt, worry, depression, shame, anger, or some other emotion that drives me to write.   I guess it means every blog post is skewed by its catalyst emotion.  I can’t do much about that, but today’s emotion, even though it’s Friday, is soul-tired.

I’m praying for a lot of people.  A lot.  They all have serious needs, problems, grief.  I don’t know what good the prayers do but I like to send them up anyway.  I’m a little unconventional with that, but I do pray from my heart and my heart always answers back you are not alone in your hurt.  You are not alone.  And that’s the gift you get back when you pray for others; it’s all mirrored back at you, offering perspective and empathy and, if you dig deep enough, peace.

Blah blah blah.  Some pictures:

Me and an unidentified large bear, outside the Bass Pro Shop in Springfield, Missouri.

Me and an unidentified large bear, outside the Bass Pro Shop in Springfield, Missouri.

his mama's bony body and his daddy's tan

Mama’s lean body, daddy’s tan skin

old days, exploring in the forest near home

old days, exploring in the forest near home

the waterboy

Waterboy

daddy holds Jonah's hand and grandma walks beside them - away from his residence and across the campus to the car.

daddy holds Jonah’s hand and grandma walks beside them – away from his residence and across the campus to the car.

Mama will see you tomorrow, Boo.  Sleep tight.

Posted in Anderson School, autism, behavior, doctor, grandma, hospital, placement, The Anderson School for Autism, Uncategorized | Tagged , | 2 Comments »

the amazing things

January 6, 2013 by The Never Normal

I’ve been kind of sick for too long a while.  I’d rather be sicker and have it over more quickly.  There is simultaneously optimism and fear inside me – and a disheartened kind of grief.  A good, gracious man I know died on New Year’s Eve; he was only 61.  I’m not sure what’s going on inside my head but I need to watch videos like this and seek out information like you get here in order to continue to have faith in humanity. 

I have to remind myself there are so many amazing things. 

I forgot to bring my camera on my trip to see Jonah yesterday, so I’ll have to share older pics.  Jonah was a good boy.  He didn’t want me to sing, though, even though he was in a parroting mood.  Andy had on the radio and Jonah was humming snippets of the top 40 music and saying things to himself… then suddenly he’s quiet, moving his thumb easily and naturally into his mouth as he turns to look out the window.  It was a warm day – maybe even 40.  My mother and I were quiet on the ride home as she tolerated my music:  things like Kula Shaker, Paul Simon, Radiohead, and Death Cab for Cutie, this day.  I won’t subject her to Greenday or the Grateful Dead; I know where to draw the line.   It was a good visit tinged with the usual feeling that comes inside when you are driving farther and farther away from your innocent ten year old son. 

Today I made chicken cacciatore and M and I are watching Dick Proenneke’s Alone in the Wilderness.   It’s such an amazing documentary that tears come to my eyes as I watch it.  This man built a cabin in the middle of Twin Lakes, Alaska (where he was the only human) and lived there for thirty years, 1968-1998, until he was 81 years old.  He carved spoons and bowls out of wood in a matter of hours.  He could chop down 40 trees and shape them into useable logs to build the cabin, all before noon.  Amazing things.  He built carriers for food and moss.  Caught fish and avoided bear.  Somehow didn’t go insane even while so literally alone.

The things he accomplishes – the way he thinks, the way he moves through the world — it’s so mind-blowing sometimes I have no reaction but to laugh out loud in astonishment.

He builds tools, tables, chairs;  intricate, near-perfect hinges; neat, even boards for shelves and working surfaces.  He narrates most of the movie, sets the camera on a tripod and films himself measuring, building, climbing, chopping, carving, cooking, gardening.  Everything handmade.  A plane would come only, I think, twice a year to bring him very basic supplies.  Are there still people like him, people who know civilization but choose to leave it, with talent and skill and that true harmony with nature?  I am in such awe of it.  No wonder I love Laura Ingalls Wilder.

For me these people speak of possibility, and resilience, and determination.  

It’s good for me today.  So here are some random things while I make my exit to watch some more about Mr. Proenneke:

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O

Silly Me

Silly Me

O

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ScareMeNots recycle!

The Hudson River in March 2002Rhinebeck NY

Baby Jonah...Looking right at me.

Baby Jonah…
Looking right at me.

Gustav Klimt'sThe Kiss

Gustav Klimt’s
The Kiss

O

my child of the water

Posted in autism, placement, swimming, The Anderson School for Autism, Uncategorized | Tagged , , , , , , , , , , | Leave a Comment »

a patient disentangling

December 30, 2012 by The Never Normal

“You are always saying something
You swear you’d never say again…”

~ Fa Fa by Guster

Awareness is everything.  I too often play the ostrich, burying my head in the sand.  Not a good plan if you intend to see, or move, or live.  I have turned a corner, maybe, pushed gently but firmly into the light by my amazing friend R.  In part, he wrote to me:

You know damned well it’s the Key to the Garden 
To say, “yes”
To be silent to it, 
And by ‘it’ I mean everything. 
To witness preconceived…
To be the recipient of true mercy,
 
To repent to the beautiful,
 
To witness your own suffering from God’s embrace, 
Rather than punishing that very suffering, 
Locking it in the closet like some kind of monster.
And:
So too do we tend the garden of ourselves, 
We become the fountain
from which beauty becomes.
Open your mouth and pour forth.
The graying thorns push forth new roses.
So seemingly impossible it seems 
To disentangle from their clutch,
Without losing of the flesh, 
When it is merely a step backward,
A patient disentangling,
 
But Jesus H Christ it hurts.
And:
I could write inspiring and encouraging words, a pep talk Chicken Soup For The Soul, 
but I already fell into that trap.
 
I don’t have a fucking clue what it feels like to be you. 
 
Not a clue.
 
What the fuck do you know, R? 
You don’t know shit. 
That is so, that IS so.
 
I DO know that walking towards life is at once the brave path, 
And yet the only one that brings relief.
 
I do know that fucking much.
That much I do know. 

And so I answered “yes,” and something inside me woke up, and I am walking toward life, toward embracing life – all of it, even the suffering and pain – the helplessness and disorder.  At Four Winds they call it “radical acceptance.”
Because one of the things I never say here is how close I have been at any given moment to turning away from life completely.  How my bones feel like bars of a cage… how often I want to crawl out of my skin… how I feel utterly uncomfortable inside my body.  How close I come to running away in a literal sense – to driving until the gas is on empty and then curling up in a ball in a forest somewhere.

Yes, I know how ridiculous I sound.

I can change all of these things.  What you focus on expands.
It shall be an amazing, healthy, happy 2013.

And as if to drive this all home, Jonah was wonderful yesterday.  My mom and I risked the snow we knew was coming and drove down to Rhinebeck, luckily before any weather had started at all.
Jonah wanted grandma in the backseat and he proceeded to steal her gloves and wear them quite happily (which is funny because he won’t wear his own. Maybe we’ll get him a similar pair as these, which he loved and laughed about having “stolen” from grandma):
The satisfaction of a heist well executied: pulling them on...

The satisfaction of a heist well executed: pulling them on..

Looking over to see her reaction...

Then glancing over to see grandma’s reaction…

I love how he looks like a little guru here, or as if in prayer...

I love how he looks like a little guru here, or as if in prayer…

Jonah sang and laughed and ate tune-fish-sandwich and chips and cranbewwy soda.  He took his bath and we went for car ride to transfer station (where you recycle).

My mother and I breathed a collective sigh of relief when we started home in the snow…we thanked God, almost in tears, for another good day, for a happy boy.

And later, having arrived safely home, I took a few pictures of the beautiful snow falling on my house and lawn.  I put Knockout Ned out there for the ScareMeNot Facebook page, so you’ll see him hanging from our lamp post:

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

“And what you wished for could come true;
You aren’t surprised, love, are you?”

~What you Wish For, Guster 

Posted in autism, grandma, Uncategorized | Tagged , , , , | 2 Comments »

everything i never say

December 27, 2012 by The Never Normal

It’s interesting when some people worry about/disapprove of/mock my disclosing so much of my life here. 

In fact it’s almost funny.  The truth is I only” type & tell” about thirty-fifty percent of what is relevant in any given post, and that’s not a time crunch problem – it’s a matter of what to say and how to say it.   Or if I even have it in me to do so. 

And so tonight I’ll post two quotes and a bunch of pictures and leave it at that, before I start saying a whole bunch of crazy shit.  I promised not to sugar-coat, but I never promised to reveal all.

I cry out for order and find it only in art.
~ Helen Hayes

Everything has its wonders, even darkness and silence, and I learn, whatever state I may be in, therein to be content.
~ Helen Keller

God knows how Helen Keller had that superpower.  I sure don’t, though I love the quote.

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O

O

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Posted in autism, behavior, Uncategorized | Tagged , | 3 Comments »

whales

December 25, 2012 by The Never Normal

comic relief:

jonah and the whales…

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not a merry christmas post

December 25, 2012 by The Never Normal

“oh ho, alas alas” ~ john berryman

my first ever no-capitalization post, i think.  i am playing e.e. cummings for a few paragraphs and oscar is dead.  i write only because i need to release a few things tied up inside me…

andy picked jonah up at anserson this morning and the other children in his house had been picked up the night before (we have yet to even attempt an overnight visit), and the ride up was okay.   quickly things went south, though, once they got to albany, and jonah spent the majority of his time weeping uncontrollably, despite presents from santa and bath and turkey sandwich.  he wanted a car ride to the train (which never came) and at some point during the ride, inexplicably, his face froze and melted into sadness, anguish, pain.  he wept and wept, then threw his coat, shoes, and socks at andy – most of which i was able to deflect.

O

Eventually there was nothing to throw.  So Jonah kicked the back of the seat, hit hard at his window.

Andy pulled over so he could hug Boo, but Boo pleaded mama? so I got out of the car and I opened Jonah’s door and leaned in and hugged him tight.  Then tighter, giving him sensory pressure, loving him loving him loving him, until finally he un-tensed, collapsed into me, and wept harder – crying and sobbing.  We cried together, the back door open on the side of the road.  Then we’d calm him down and we’d get 500 more feet down the road and it would happen again.  No go back to Anderson?  Hot dog?  Bath?  Pa comin’? — confusedly, desperately.

Andy drove, and I cried, and Jonah alternately calmed down (and even giggled once) before again becoming angry and then falling backward into something like despair.

Inside my mother’s house, after the car ride, he punched me hard in the face and and kicked me in the ribs.  He head-butted Andy, trying to bite, enraged and frustrated.  We had to just lie with him on the carpet for a good long while

and whatever it is I’d pay a million dollars to fix it.  He breaks my mother into a thousand pieces, every time.

There is too much to say and who the hell wants to read about this anyway on Christmas Day?

I will post something better, later. Funnier.  I’ll be David Sedaris.  Just not on this particular December 25th.  Lo siento.  And I cannot forget Connecticut; I pick at its horrific entirely like a scab, imagining the families, those familes and their unthinkable Christmas pain.

We sometimes mourn for what we do not or cannot have any longer, or at all — for things and concepts; dreams, wishes, and people – we mourn for what is irrevocably gone.  But also we mourn for what will go on and on and on and on, painfully and unceasingly beyond our capacity to fix.

O

I’m so sorry, Boo.  Mama loves you.

God please help him.

Help all in despair this day.

Posted in Anderson School, autism, behavior, The Anderson School for Autism, Uncategorized | Tagged , , , , , , , | 3 Comments »

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