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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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