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Archive for the ‘language’ Category

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.

OLYMPUS DIGITAL CAMERA

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

OLYMPUS DIGITAL CAMERA

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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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,

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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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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* 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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“I do not think God makes bad things happen just so that people can grow spiritually.  Bad parents do that, my mother said.  Bad parents make things hard and painful for their children and then say it was to help them grow.  Growing and living are hard enough already; children do not need things to be harder.  I think this is true even for normal children.  I have watched little children learning to walk; they all struggle and fall down many times.  Their faces show that it is not easy.  It would be stupid to tie bricks on them to make it harder.  If that is true for learning to walk, then I think it is true for other growing and learning as well.

God is supposed to be the good parent, the Father.  So I think God would not make things harder than they are.  I do not think I am autistic because God thought my parents needed a challenge or I needed a challenge.  I think it is like if I were a baby and a rock fell on me and broke my leg.  Whatever caused it was an accident.  God did not prevent the accident, but He did not cause it, either…. I think my autism is an accident, but what I do with it is me.”

~ Lou Arrendale in The Speed of Dark by Elizabeth Moon

The Speed of Dark is the only book I can think of that, when I got to the end, I was so disappointed there was no more to read that I just turned back to the beginning and started reading it again.  I’ve re-read it a bunch of times since; it takes place in 2030 or so and its protagonist is Lou, a man with high-functioning autism who must decide whether or not to undergo a new procedure which can make him “normal.”  I got the title of this blog from that book.  I’ve thought a lot about what it is to be “normal,” and what that choice must have been like for Lou.

Sometimes I wonder what Andy and I would do if there was a procedure like that available right now – something that could make Jonah “normal.”  I suppose most people would be surprised that I really don’t know…that it would not be an easy choice…that although I can’t answer for Andy, I actually might not be able to choose to make him “normal.”  And I don’t really even know why.   Maybe it’s because I’ve never had a “normal” child and don’t quite know what kind of mother I’d be to one.

Jonah — the way he is and all that he is –  is all I know.  I suppose if I could have every bit of him except the violence and aggression, that’s what I’d choose.  I don’t know if I want to eliminate the part of him that has autism.  There is something magic in that.  Something pure.  Unassuming.  Uninhibited, nonjudgmental, and innocent.  I’d want to keep all that.

This weekend M has his kids, one boy (N, age 11) and one girl (J, age 6), Jonah aged right in the middle of the two.  I get along fine with both kids but am continually amazed at what they know- how they act – what they say and think and do.   I try to imagine what it would be like if Jonah could be here too…if he were like the other kids.  Would he play with N, since they’re close in age?

What kinds of things would Jonah like to do?  Would he still want to swim and sled and sing?  Would he still like the same things to eat?  What would he be able to say to me?  What subjects would he be best at in school?

I’d have a million questions and no answers.  Nothing new about that…


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“Stuck without a captain or a chart,
No one seems to know just who to follow anymore;
Hang on…hang on…there’s a twilight, a night-time and a dawn.
Who knows how long? So hang on…hang on.”

Hang On – Guster, from Ganging Up on the Sun

So I hang on and I hang on and I hang on.  Now I’ve thrown myself back over to the safe side of the cliff.  Is it dawn?  There’s light here.  Solid ground.  And I’m still standing (raking, even, today) in the autumn-chilled sun of mid-November.  Andy is helping with Jonah again and it is near bliss to be able to go into the woods and sit or make pictures

…consciously dropping my shoulders, breathing deep the clean forest air.  I’d almost forgotten I’d have help again.

Jonah attacked once so far today when he was with Andy, in my car.  That safety harness I bought has proven worth its weight in gold.  Now Andy’s off to his new job and Jonah’s napping on the big chair in our family room with a Mother Goose book clutched in his hands; I’m stealing a minute here before we go to my mom’s for spaghetti dinner.

Yesterday when I got home I found a reusable green grocery bag on my porch with a card, chicken dinner, black soda, and some other goodies in it…from friends J & Mi (I’ve got a whole periodic table of the elements going on here with my ‘identity protection system’).  It is a blessed thing to not have to prepare food, and it is humbling to know that people care.   I’m grateful – even as I bitch about our Lifetime TV existence I am grateful.

Andy took Jonah to see Albany’s Veteran’s Day parade on Thursday, and as they were walking from where he’d parked to a decent vantage point, they had to step between two bushes on either side of the path.  Andy tells me that a big crow cawed, practically right in Jonah’s ear, and Jonah stopped short in surprise.  Then the crow cawed again, and some other birds in the other bush answered, and Jonah just stood there, half-fear and half-fascination on his face.  Andy says finally he had to drag Jonah away – that the birds themselves were probably enough of a parade for him.

There’s a fable fit for Aesop in there somewhere:  Jonah and the crow.

I guess the actual parade didn’t do much for him, with all its too-loud brass-filled bands and assorted military vehicles & marching veterans.  He put his hands over his ears for a lot of it so when there was a break in the action, Andy led him away and back to the car.

Moral of the story:  A parade in two bushes is worth one marching down the street.

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Narrator: How can he possibly resist the maddening urge to eradicate history at the mere push of a single button?
The beautiful, shiny button?  The jolly, candy-like button?
Will he hold out, folks? Can he hold out?

Stimpy: No I can’t! Yeagh! (presses button)

~ The Ren & Stimpy Show

Another fun ride in Jonah’s amusement park of life is “button.”

“Buh-ih?”  he asks, lazily mushing the consonants.  (He’s a big-time consonant musher).

What he wants, if you will believe me, is to sit on one of the two chairs in the computer room and turn the printer on and off and on again by pushing the big, candy-like button.  This is usually verboten, but once in a while I’ll allow him to press the beloved button five or six times.  I think a large part of the charm for Jonah is the racket of inner mechanisms coming to life and then shuddering to sleep, all accompanied by bright, blinking red & green lights.  I don’t want him to break the thing, of course, but he asks “button?” so sweetly that he’s hard to resist.

He also loves to sit on my lap at the computer and watch videos.  For a long time he begged for “the ocean” and I’d play short videos taken in Cape Cod of him romping in ocean waves.  When he was younger he liked Disney, Wiggles, and other kids’ websites; nowadays I like to play him YouTube music videos by They Might Be Giants and Schoolhouse Rock — but ultimately egotism prevails; his all-time favorite computer activity is to watch himself watch himself on video.  I know that’s confusing but it’s also the truth.  He wants to watch a video in which he watches himself in my dresser mirror while he sings a Guster song.  Of course he doesn’t have an ounce of modesty or self-consciousness about this self-absorption, which is funny to see.

Do I have a young Narcissus on my hands?  He really dug the pool too.  He fell in love with his own reflection in a pool, right?  Maybe I’m onto something.

In 20th century pop culture, I just read on Wikipedia, Bob Dylan’s song “License to Kill” refers indirectly to Narcissus:  Now he worships at an altar of a stagnant pool /And when he sees his reflection, he’s fulfilled. I’ll have to play that one for Jonah.  Maybe he can learn it, watch himself sing it in my dresser mirror as I tape him, then later watch it on video.  Then I could videotape him sitting there, watching that on video.  And then videotape him again as he watches that on video.

Ow.  No.  That hurt my brain.

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bye bye

When Jonah was a baby and toddler, he didn’t wave bye-bye the way other little kids do.  I remember watching these other kids, usually children of Andy’s old friends (a lot of them clustered around Jonah’s age), wondering why Jonah couldn’t do what these kids could.   At one particular birthday party, when a nine-month old waved and said bye-bye to me, I damn near fainted in amazement.  They can do that?

On the other hand, Jonah had his share of unique accomplishments.  He sat wide-eyed with his head up almost immediately after birth and was walking unaided at 8 months old…so it’s not as if, for a short while there, I didn’t have that parental pride of “my kid did something early.”  In fact, Jonah continues to surprise me with new feats every day.  He takes more naturally to water than any kid I’ve ever seen.  He runs like the wind.  And he can hold a tune – pitch and rhythm both very nearly on target.

Still, for the longest time, no bye-bye.  Certainly never spoken, and not gestured either.  It seemed to mean nothing to him.

I don’t recall when he first started with bye bye, but now it’s one of his go-to phrases.  However, instead of embracing its traditional use – to bade someone farewell upon parting – Jonah prefers a less common meaning: please leave now (the please, of course, being optional).

There are many occasions where Jonah will employ the bye bye method of disengaging himself from an annoyance.  The annoyance is usually a person:  me, wanting to five him a bath.  No!  Bye Bye!

His father, asking him if he’s got a poop in his diaper:  Bye Bye!  No!

Children on the playground who, curious about my pebble-hoarding son, stray too close.  Bye Bye!

His teachers undoubtedly hear a lot of bye bye.  And the counter people at McDonald’s.  His babysitters.  The lady who cuts his hair.

Bye-Bye, mama!

I guess he’s making up for all those years he didn’t feel like wrapping his quirky little mind around the concept.

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