Archive for July, 2011

There’s no earthly way of knowing… which direction we are going…” ~ Willie Wonka

Not only don’t I know which direction we are going, but I don’t even know now where I am.  I sleep as early and as much as possible – greedily falling into the cushion-y darkness where everything turns OFF for long, glorious hours.  I wake confused, then teary, and I gulp down the pills that help me through the day.  I’m just not hungry lately either.  It’s as if I got to an anxiety/fear point so high I smashed through its glass roof (Willie Wonka style, speaking of the great confectioner) and now I’m flying around grasping at different ideas, completely ungrounded, definitely dazed, and evidently, flaking out as well.

All these thoughts.  I decided I ‘m going to learn Spanish.  I want to visit Mansfield, MO, home of my beloved heroine, Laura Ingalls Wilder.  I’m going to read books even as an English major I’d never dared attempt:  Les Miserable and War and Peace.  I’ll learn to play guitar.  Write a novel, maybe even out of this blog.  Visit my relatives, send them all care packages.  Volunteer to read to kids at the library.  Walk dogs at the humane society.  Do yoga.  Learn to paint.  Anything, everything.  Something so I’m not nobody doing nothing.

Sometimes I have these grandiose plans to change the world, at least my world and the people in and around it, making positive deposits in the great big bank of karma.

But still I play out scenarios of the day we drop off our son, over and over, with different circumstances and outcomes each time…except he is always gone at the end.  In the scenarios we always have to go, we always drive away.  He is always, always gone, and he will be gone, and he will be gone soon.  No wonder I am meditating on impermanence.  I can’t really comprehend any of it.

Andy and I met with a mediator and we have workbooks to fill in, just like we did at the church when we were planning to marry.  Everything is cyclic.  We will wait until Jonah is at his new school and then we will re-convene, workbooks completed, bringing yet another thing to its conclusion.

My friend H (bless her) invited M and me and Jonah to her pool again tomorrow, thank you thank you thank you little H.  To her it may not be much but to us it is everything.  Yesterday M and I had to drive Jonah around the entire time we had him; there was simply nowhere we could go.  It poured rain and Jonah didn’t want music.  I got him singing at one point but then he started his repetitive requesting-phase:

Wannatakeabath?  Wannatakeabath?  Wannatakeabath? Bye Bye M.  Wannatakeabath?  Daddy?  Wannatakeabath? Bye Bye M.  Daddy?  Daddy?  Grandma?  Swim-pool? Swim-pool? Wannatakeabath? Wannatakeabath? Wannatakeabath? Wannatakeabath? (Insert BLOOD-CURDLING SCREAM instantly followed by giggling laughter).  WannaseeJack?  WannaseeJack?

And I curse myself for gritting my teeth and wanting to shout SHUT UP because soon enough I’ll wish I could hear his little voice, no matter what it was saying or shouting or screaming.

Oh, what a weird place in time & space this is.

“For the rowers keep on rowing,
And they’re certainly not showing
Any signs that they are slowing…

~Willie Wonka

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“Every thought you produce, anything you say, any action you do, it bears your signature.”
Our signatures, then, over all the world,
with every moment we exist,
like fingerprints – your hand on my bare shoulder; its mark of love…
Our footsteps on the ground;
the way we meet the earth, walk & mark the earth.
~ Lie still & breathe ~
or rise, enraged, to rave & blame, mark & judge,
to find an other & lay upon it all the pain, the wrong
There is no other. 
Lie still & breathe.  Be still.  Breathe.
Stream-of-consciousness poem there.  Sorry to flake out on you all.
I am reduced to – or, quite possibly, fortified by – breathing. 
Smell the rose, blow out the candle.  Smell the rose, blow out the candle.
Again.  Again.  Again.  Again.  Again.  Now and now and now and now.

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“The seed of suffering in you may be strong, but don’t wait until you have no more suffering before allowing yourself to be happy.”
Thich Nhat Hanh (The Heart of the Buddha’s Teaching)
I am losing a lot, like it or don’t, as P would say.  But I’m tired of myself, tired of carrying on in my grief, so I’m turning (as you may have noticed) to Thich Nhat Hanh, one of my favorite Buddhist monks, for guidance and peace.  I’m turning to the Buddhist view of impermanence – that which says nothing has permanence, that permanence is an illusion we cling to.
Well I’m a Buddhist by circumstance, then. Yet I am also many more things: raised Catholic, I still go to Mass on occasion and cling to my roots, finding solace in the ritual of the Mass.  I may be other things I haven’t even discovered yet.  So it goes, to throw in some Vonnegut.  This is my favorite little story about Kurt Vonnegut, taken from Wikipedia:
In the mid 1950s, Vonnegut worked very briefly for Sports Illustrated magazine, where he was assigned to write a piece on a racehorse that had jumped a fence and attempted to run away. After staring at the blank piece of paper on his typewriter all morning, he typed, “The horse jumped over the fucking fence,” and left.[17] On the verge of abandoning writing, Vonnegut was offered a teaching job at the University of Iowa Writers’ Workshop. While he was there, Cat’s Cradle became a best-seller, and he began Slaughterhouse-Five, now considered one of the best American novels of the 20th century, appearing on the 100 best lists of Time magazine[18] and the Modern Library.[19]

The lesson I take away from all of this is I can’t abandon life by sitting in my soiled self in the sorrowful, shallow end of the pool.  I have to keep writing because it saves me.  I can come out the other side of this, make myself into someone good, be Jonah’s mother as best I can, be the change I want to see in this world (thanks, Gandhi) instead of complaining about the changes that aren’t happening.  I may moan and rave, cry and bitch, but I’m not going down without a fight.  I am recharged with people all around me, some who don’t even know me.  They care and they tell me so and it helps like they will never know.  I am not alone, I tell myself, mantra-like.  I am not alone.

Mary helps me too.  Yes, that Mary.  The mother of God Mary.  She sure had a difficult child, an only child (it seems) and she lost him too, in many ways, before she really lost him.  She understands. 

  • St. Josemaria Escriva: “Love our Lady. And she will obtain abundant grace to help you conquer in your daily struggle.”  “When you see the storm coming, if you seek safety in that firm refuge which is Mary, there will be no danger of your wavering or going down.”

How can I believe all these things simultaneously? 

“Do I contradict myself?  Very well, then; I contradict myself.  I am large – I contain multitudes.” ~Walt Whitman

(I’m actually quite scrawny, but I think Walt was being metaphorical). 

I am going over to see Jonah-boo tonight, to take him on the “Groundhog Day” tour of his favorite things:  the train, car ride, maybe grandma or a peanut butter roll.  If it is warm enough, swimming and splashing. 

I am looking forward to it, whatever it brings.  I love him so much.

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“For things to reveal themselves to us, we need to be ready to abandon our views about them.”
Thich Nhat Hanh (Being Peace)

Thank you for everyone who voted for me – I seem to be see-sawing back and forth between #20 and #19, and I don’t expect to stay this far up on the list, but I cracked the top 25.  I appreciate your votes, all of you. It’s funny – Elizabeth Moon has a blog on the list (I haven’t looked at it yet) – but she wrote a fantastic book about autism, The Speed of Dark, set slightly in the future, which gave me the idea for the name of my blog; one of her characters said it in the course of a conversation.

So I am relentlessly counting.  Twenty two days – three weeks from tomorrow – we pack up Jonah and all the things they’ve asked us to bring for him, and we drive him away to live at an educational residence for kids with autism.  It’s like a movie I am watching, or a book I forgot what chapter I’m on…a dream I am consciously trying to end.  Sometimes I literally can’t even breathe… I can feel the pressure in my lungs, my heart, my bones, my center.

Tomorrow Andy and I go for our free consultation for divorce mediation.  M is tired of me being miserable and often “snippy” as he calls it.  He helps me watch Jonah 4 times a week and it is wearing on him – he has his own children and he wants time to relax.  My sadness wears on him too; he says I am not the same person I was.  That it true – I am not and never will be again.  It is not his fault that I am a mess.  I wear this like a cloak and I shed the cloak sometimes but then I wrap it around me again.  How many metaphors can I use to describe this kind of helplessness, this form of pain?

Maybe I should be alone.  Maybe I should be done.  The counting won’t stop, this ticking ringing in my ears (I go next Friday for a hearing exam but it won’t stop the clock).  I hold my breath and hold my breath and pray I don’t burst out crying at the gas station or the grocery store.

I try to hold my son tight and he says bye-bye mama, bye-bye mama

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Someone nominated me for Babble’s Top 25 • 2011 autism spectrum blogs, which is cool and kind of humbling.  Even though the title says it lists the ‘top 25′ it actually has the top 100 or so, based on readers’ votes.  If you read my blog and like it, will you please click on the link above, find Normal is a Dryer Setting (I think I’m number 33 or something right now) and then click on “I like this?” 

My goal is to make it into the actual top 25. 

Thanks.  🙂

It’s supposed to be 95 degrees or so today, and we’re planning to go back to my savior-friend H’s house after work so fish-boy can swim some more. 

This morning when I got to work, I was unloading the dishwasher.  We have these very tall, heavy glasses and I held one in my hand for a second and really, really wanted to throw it at a hard surface, just to watch it smash…to see the shards fly…to destroy something.

But I didn’t.

“Suffering is not enough. Life is both dreadful and wonderful. How can I smile when I am filled with so much sorrow?  It is natural–you need to smile to your sorrow because you are more than your sorrow.” — Thich Nhat Hanh

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My good friend H, bless her, invited me and M and Jonah over to her house tonight and Thursday night to swim.  It’s all for Jonah, of course, and I soak up every moment of his dolphin-happiness;  at his request, swimming sans swimsuit again.

At one point he came climbing, seemingly happily, up the stairs of the pool and onto the deck, where he ran past me and went to dig his little fingers into H’s son D’s face.  We managed to avoid any injury, but only by a hair.  We re-directed Jonah back to the pool, and brave little D spent just a moment hiding behind his mom before smiling again and throwing balls into the water for Jonah to play with.  He’s a sweet little boy, almost 4.  I marvel at his words – his brain and how it works so differently from Jonah’s.

It’s always a swim-and-run, as Jonah decides abruptly when it is time to leave and simply starts heading toward the car – but this time Jonah scored himself a hot dog and some black soda as well, the little scamp.

When M and I got home, he surprised me by having DVR’ed old-school Bugs Bunny cartoons, and one of them was my absolute favorite – with Marvin-the-Martian:

Now Lewis Black is on TV; M and I saw him at the Palace Theater last year.  He just said:  “The Republican party has bad ideas, and the Democrats have no ideas.”

I think he’s right.

Anyway, I feel better tonight.  I feel grateful.

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I don’t consider myself much of a poet, but I wrote some poems for Jonah when he was a baby, when I expected something far different than what my life has become…when I saw a path clearly before me and walked it with something like confidence… 

…when I expected to be sitting in the bleachers now, cheering him on at his little league game.  When I expected to be friends with other mothers whose kids played with and shared activites with Jonah.  When I expected to be able to bring my son to a child’s birthday party and watch him scream with joy as all the candy came pouring out of the piñata, instead of hovering over him as he opened and closed the host’s sliding glass door incessantly. 

Instead of taking him to the park by myself, pretending other parents and kids weren’t staring, wondering, maybe judging, but never approaching us except when some child would ask with curiousity, “Is he a baby?” or “why can’t he talk?” – and me choking on my tears as I tried to explain.

…instead of losing touch with most of my friends because I became a hermit and uncomfortable around (and often unfairly resented) NT families.  And all this before any aggression and violence.   And all that before checking myself into a mental health facility.  And all that before making the decision to take him to live at a residential school.  And all that before ending my marriage. 

Do I sound like I feel sorry for myself?   Sometimes I do.  My therapist even gave me permission last night, so long as I don’t martyr myself or wallow.   In 4 weeks my son will be gone and my legal separation will be taking place.  Doc tells me I have osteoporosis with a lower vertebrae fracture.  I’m waiting on results from two biopsies, can’t keep weight on, have this strange ringing in both my ears, and sleep as much as I possibly can.  (I”m definitely not Darwin’s poster child).  I’m so tired of crying and feeling anxious, missing parties and weddings and picnics I am invited to because I can’t bring myself to go; if anyone asked me anything at all about Jonah, I feel like I’d lose it and ruin all the fun. Plus for me right now there is nothing to celebrate except “I am doing the right thing” with Jonah, so people tell me. 

Some people insist they couldn’t do it, “put their child away.”  You can when you have to.  You can do anything when you have to, I guess.  I know this is just a hill I have to run up and over, but my legs are cramping and I have no breath.  I don’t know what’s on the other side of the hill, and that scares me too.  Weakling, a voice inside me whispers.  WorthlessYou are superflous now.

I’ve revisited my poems from Jonah’s babyhood, and I thought this one strangely prophetic:

I am your mother.

I may hold you clumsily close, my
sharp angles & skinny arms awkward,
but I hold you close anyway.

You find a comfort in my bones
as walls of a former residence;
as familiar pillars echoing womb whispers…
as fetal backdrop for acrobatic feats.

I may sing you nonsense, silly snippets
of all kinds of songs, lazily off-key
but I sing them to you anyway.

You find a diamond in my song
as the voice you heard awash, internal;
as divinity, a speaker in the sky…
as soundtrack to gestation’s miracle.

I may love you with a racing heartbeat
composed of odd & syncopated rhythms,
but I love you with every heartbeat anyway.

You find a living element in my love
as the cycling pulse of ocean tides;
as habitat for emotion magic, undefined…
as something inside you that can never die.

I will always be your mother.

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“I been talkin’ to Jesus, but he’s not talkin’ to me…”  ~Guster

Wednesday morning I met Andy and Jonah at the Retina Care Center at 7:30am for Jonah’s eye exam.  The last couple times Andy tried to drive him, they never even made it to the building because Jonah was violent, so we hadn’t been there for a while.  And even though we always ask for the first appointment of the day and it is the crack of dawn, there are always about 9 other patients waiting; I don’t think Jonah’s ever been the first patient actually seen by the doctor.

The staff knows Jonah falls apart quickly – they’ve certainly seen it many times before.  And when I say “falls apart,” I mean falls the fuck apart, aggressing so that Andy has to get him out – biting, scratching, kicking and thrashing – and screaming so piercingly, frighteningly loud you could sell the sound as a special-effects scream for a horror movie.

But Jonah did well this time.  He only needed to be re-directed about 40 times during the course of our 15-20 minute wait.  He begged repeatedly for “ride brown car-ah,” dumped the container of glaucoma brochures, nestled his little face against his daddy’s, asking for hug?, yelling MEOW, walking over toward the exam room and back to mama, announcing boobie!, flopping and flailing on the carpet at least twice.  All this on medication to calm him.

(My friend K just e-mailed to tell me it looks like Thing from The Addams Family is crawling on Jonah’s head, and I laughed my head off.  It totally does.  Creepy!)

It’s funny how you go from being embarrassed by your child’s behavior to not really giving a damn if people think you’re bad parents or your kid is an unruly retard.  It took me a good while to get to the place where you don’t give a damn.  It feels better here.

When they finally gave Jonah his eye exam, though, I was impressed at his cooperation to deal with the dilating drops, more waiting in another waiting room, sitting in a strange chair in a small exam room in the near-dark, holding the black plastic thingee over one eye, reciting his letters.  (How do they get this information from non-verbal patients?)  He tolerated the different slides of  smaller and smaller letters – with both eyes, even.  The doc told me later that his eyes were about 20/25.  After she examined his eyes in another exam room (with fancier equipment he also tolerated admirably), Andy and Jonah went bye bye doctor and I stayed behind to talk with her.

She’s kind, sharp and smart; she was the one who operated on Jonah’s left eye.  I trust her.  I made an appointment for October and left, holding the card in my hand, thinking the next time we bring him, it will be after picking him up where he’ll be living, an hour and a half away, at the Anderson School for Autism.  Halfway down the hallway stairs I stopped walking and turned the card over and over in my hand.  “…where he’ll be living, at the Anderson School for Autism…”

I revisited the thought from a place of detachment, kind of the way you do when you first hear about the death of someone close. There isn’t a right way to react to all that has happened during this past year.  I’ve gone into a mode where I’ve ceased to be surprised by anything at all, where every part of me knows that anything can happen, at any time, to anyone.  Everything comes at us so quickly now, and there is a sense of unshakable urgency.

Yesterday after work Andy and I took Jonah for a car ride, and on the way home there was a beautiful rainbow.  (Whenever I see a rainbow, I stop whatever it is I’m doing to take a picture – even if it means running out into the parking lot at work and getting all wet to do it).   I pulled the car over and took as many pictures as I could before I started to feel like that double-rainbow dude on Tosh.O.

I need to continue to notice things, be grateful for things, believe things.
There is no other way right now.  This is my necessary path.

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On Friday I reached out to a LinkedIn contact whose description said she was an ASD (Autism Spectrum Disorder) specialist.  She was incredibly kind and has made a social story for me to read to Jonah as he gets closer to transitioning out of Wildwood and into Anderson.

Also on Friday my mom and I drove to Anderson for a tour (her first, my second).  She was very brave about the whole thing and only cried a few times.  We got to see his room, and the bathroom (with a bath tub) is right across the hall from him.  Today I’m going to work on his social story and make a list of all the things I still need to do (get doctors to sign things, give us prescriptions and permissions…buy things on the list I haven’t yet gotten him.  I’m even sending him to school with my beloved GUSTER book bag).  These last 5 weeks are going to go fast; but then again, summer always seems to fly after the 4th of July has passed.

Emotionally I have good days and bad days, just like boo.  It is worst when I approach the cash register with a pile of his towels and bedding or whatever.  One cashier even asked me if I was going off to college – which was flattering, considering I graduated from college 20 years ago, but her question also required some sort of response.  I smiled that just-smile-Amy look I have on my face a lot these days and told her, simply, “no.”

Yesterday M and I took Jonah to swim at my friend H’s house.  Her 3-year-old was there but he was floating around in a pool toy so whenever Jonah told him “bye bye,” H could navigate her boy away from King Jonah of the Pool.  Meanwhile Jonah cavorted, swam around, went underwater, and jumped in about 80 times.  When he was done, though, he was done.

“All ny-yah,” he said (rhymes with pie-yah) which is his invented, alternative way to say “all done,”  and he climbed out, ran down the pool stairs, and started to make for the car.  “whoa, whoa, little boo,” I said as I caught him up in my arms.  After chasing him around the pool deck for 10 minutes or so, I got him dried off and dressed, and we quite literally swam-and-ran.  Five minutes later we’d thanked H, said goodbye to the other people there, and were back in the car, where Jonah promptly smacked my face when I put him in his car seat.  I’d already taken off my glasses, so it wasn’t too bad, as Jonah’s smacks-in-the-face go.  All in all I’d say he did really well there.

M is working on his car today, using instructions from online and the knowledge he learned from his dad, working on cars growing up in the ‘sticks’.  He’s doing stuff 90% of non-mechanics wouldn’t attempt, I think, but what do I know?

M is very supportive to me through all of this, helping care for Jonah whenever he can and holding me when I need to cry about what is happening.

But I’ve found an outlet – a way to turn the negativity into positivity – a method through which I can focus on something good, something that makes me feel like I’m not rapidly approaching the unimaginable age of 42 without having done anything of any real significance.  Now I am changing what I can, where I am, within my means and ability.  Whether this sudden need to do something good is inspired by chance, middle age, or Jonah’s leaving, I don’t care to analyze.

I have always loved this story:

Adapted from The Star Thrower by Loren Eiseley (1907-1977):

Once upon a time, there was a wise man who used to go to the ocean to do his writing. He had a habit of walking on the beach before he began his work.

One day, as he was walking along the shore, he looked down the beach and saw a human figure moving like a dancer. He smiled to himself at the thought of someone who would dance to the day, and so, he walked faster to catch up.

As he got closer, he noticed that the figure was that of a young man, and that what he was doing was not dancing at all. The young man was reaching down to the shore, picking up small objects, and throwing them into the ocean.

He came closer still and called out “Good morning! May I ask what it is that you are doing?”

The young man paused, looked up, and replied “Throwing starfish into the ocean.”

“I must ask, then, why are you throwing starfish into the ocean?” asked the somewhat startled wise man.

To this, the young man replied, “The sun is up and the tide is going out. If I don’t throw them in, they’ll die.”

Upon hearing this, the wise man commented, “But, young man, do you not realize that there are miles and miles of beach and there are starfish all along every mile? You can’t possibly make a difference!”

At this, the young man bent down, picked up yet another starfish, and threw it into the ocean. As it met the water, he said, “It made a difference for that one.”

This story has appeared all over the web in various forms, usually with no credit given to Mr. Eiseley. Loren Eiseley was a anthropologist who wrote extensively. He was the ‘wise man’ in the story, and he was walking along a beach after a storm and encountered the fellow throwing the starfish back.  Sometimes it is a little girl throwing the starfish into the ocean, sometimes a young man, once even an elder.

I want to be a star(fish)-thrower.  Like that lady I found was for me.

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“…there is love, there is peace in this world…”

~ Guster

Jonah had lots of fun swimming the other day in a pool whose owners had kindly offered us its use while they went away for the weekend.  He wanted to swim sans suit, so we let him.  It was wonderful; he laughed and played.  What should be common is rare and precious.  Here are some pics, and more I took recently, capturing beauty…breathing it…internalizing the warmth of the sun, the smiles of my son… 

I love to take photos and wish I was 1/100th as good as my cousin D.

he loves to swim along the bottom of the pool

~~~ he is a creature of water ~~~

…which was fun to take pictures of too…

I loved these flowers M delivered to my work, surprising me because I have been so sad – they are even more beautiful now that all the lilies have opened their eyes…

I love this plaque my sweet friend D gave me – my favorite thing to see each day when I wake up.

And I love how many of the trains we see have gorgeous graffiti:

And of course I adore Match Game & Richard Dawson, my campy 70s escape-love.

(Here he’s even promoting my profession).

Every time I get knocked down, I get back up again, damnit.  So far I’m doing it, whatever this is that I’m doing. 

Thank you all for your collective conscious loving energies, prayers, and encouragement.
I am literally powered by it all.  I keep going because you push me gently along…so thank you.

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