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Archive for the ‘autism’ Category

I like to pretend I can speak Spanish, though truth be told I can speak German better, and I can’t speak that either.  So I’ll bet the title is butchered.   I do have the Rosetta Stone Spanish learning system, the whole kit and kaboodle, and so learning Spanish is on my list of stuff to do, though it seems like a terribly difficult investment of time and brain-tax.

And so, in my gringo Spanish…the day of the fathers…

There are many in my life.  M.  My dad.  Andy.  Father Noone.  My Godfather, Poppy, who was also my grandfather; he passed away before I was even engaged.  I could say a great many things about each of them, and perhaps I will, but I’m distracted today by one I almost never even think about at all…my birth father.  (My birth mother was a married woman with four children, one of whom had already died when I was conceived outside of her marriage).

They give you a bit of non-identifying information  in New York State, if you are at least 18 and you request it.  The paperwork euphemistically states my birth mother was “separated” from her husband, during which time she became pregnant with me.  There is some information on my birth mother.  A little bit.  She was in her early thirties when she gave birth to me.  She was a “collector” (at a bank).  She enjoyed watercolors.  Her father had a heart attack and died when he was 45.  Genetically, from her side I am English, Dutch, German, and Indian.  I have always wondered what kind of “Indian” they meant.

From his side, though, there is nothing.  No information.

No paternity established.  Mystery Sperm Donor.

I guess I am half John Doe along with the English, Dutch, German, and Indian.  So that makes me a Heinz 57, and Jonah — well, he must have a bit of every nationality ever known to mankind.

Jonah Boo is the only person I am related to, that I know of.  I might want to know more of you related-to-me-people.  Maybe.  Why don’t I have right to know who you people are, and talk to you — just once?  It would come in handy with a lot of Boo’s medical issues, too.  The doctors say they wish they had genealogical information on my side, and I feel I’m entitled to at least that.

I wasn’t adopted until I was 6 months old.  Foster parents had me because there was some issue with my feet (which they either did not fix or over-fixed, for I’m a pigeon-toed thing to this day).  I wonder sometimes if the foster parents maybe wanted to keep me.  Wasn’t I just a little freaked out to be whisked away to a new home with new, forever parents?  Those forever parents tell me no; I settled right in.

“You were fine,” my mom and dad both insist.

I think that means I was one weird little baby.  If someone took Jonah away from me when he was 6 months old, I don’t think he’d have been fine.  To tell the truth, I kind of wouldn’t want him to be fine.  He was my baby boo.  Mine.  Maybe when you are fostering a baby, somehow the baby knows s(he)’s not your baby.  Maybe, somehow, these little new-humans understand more than we know or can remember.

I forgot about yet another father – one I’ve never thought about at all until today.  My foster father, who raised me so briefly, from birth to 6 months.  Unless I only had a foster mother.  I’m not sure, but I’ll bet it was a couple.  My dad tells me when he and my mom drove to get me at the Department of Social Services or wherever, the “transfer the baby” lady told them there were more than a few tears when they came to my foster parents’ house to take me away.

I wonder how many other babies they’d fostered, and if they adopted any of them, or had any kids biologically.  Didn’t I miss them at first, just a little?  Their smells, their touch?  Or was it bad there and so I was happy to get the hell out?

I think about my foster/birth people on three days of the year, mostly.  My birthday, Mother’s Day, and Father’s Day.  That’s if I think of them at all.  I wonder if and when they think about me.

I was talking to M earlier about how my dad and I used to watch cartoons together when I was 6 or 7, and how much better the cartoons were than the crappy ones they slap together today with computer animation bullshit.  My dad and I watched the Bugs Bunny and Road Runner Show every Saturday at 11am.  We’d lay across the couch with our hound dog, Flower, and laugh at Foghorn Leghorn or Daffy Duck, circa mid seventies.  He even watched things like Little House on the Prairie with me, God bless him.

Today we went to church and then out to breakfast, and it was really good.  I thank God I have a forever father, and that my son does too.  Gracias, mi padres.

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I love when Jonah’s school sends me photos:

Jonah, my little Boo, connecting his train cars carefully at school

Oh, Jonah.  Mama and daddy are trying hard to advocate for you while dueling eye docs offer equally insistent yet diametrically-opposed opinions on your Retisert implant & whether or not to take it out.

Eye doc number one strongly recommends NOT taking it out at this time and thinks doing so could be dangerous.

Eye doc number two seems anxious to remove it, and the sooner the better.

Every pediatric ophthalmologist I can find within this area is in the same practice as either doc one or doc two, so no real possibility for another opinion there, and these constant medical problems for my little boy are pissing me off today.

Stop piling all this shit on my child, damnit…. most of Jonah’s doctor visits are two-to-three hours long, odysseys of which Jonah endures with admirable spirit and patience.  The poor kid.  I do research online and pore over articles I can only half-understand even after two or three re-reads.  Today I called the nurse at Jonah’s school and am going to call his primary care doc first thing Monday morning.  We all need to advocate together.  Andy has long shifts of work now so it takes both of us to figure all this out.

There is more.  Doctor number one sees “activity” in Jonah’s right eye indicative of the same uveitis as the left eye.  Now Jonah has drops given to him in both eyes.  I’ve read articles about uveitis, claiming that it is responsible for 17% of vision loss, and I’ve read articles about how glaucoma is treatable until surgery is necessary.  After that I hate the word they say.  Blind.  I’m going to indulge in my histrionic state of mind and say if Jonah loses his vision I will go fucking stark raving angry, mad with the universe, mad crazy.  Mad.

I would never blame Divinity.  I don’t believe God works that way.  I don’t believe “God does not give you more than you can handle” and I do not believe “God only gives special children to special people.”  They are nice things to say but I do not believe them.

“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, the main character.  He has high-functioning autism.

From Elizabeth Moon’s The Speed of Dark

I agree with Lou’s assessment of what God causes and what God doesn’t.

Years ago, before he had uveitis or glaucoma,                    posing with his big brown eyes

What’s keeping me from freaking out entirely is that God has gifted me with doctor number three, brilliant and kind, who lets me cling to him….all during breakdowns, emergencies, and these kinds of what-the-hell-do-we-do-now decisions.   He’s going to help us get to the bottom of all this.  He’s my ace in the hole.

For now I’m going to just enjoy seeing Jonah tomorrow.  He’s been a good boy, they tell us.  Good in school, good at his house.  Good = no aggressions.  Good is what I will focus on.  What you focus on expands, they say.

Focus.  I really meant no pun.  But for now I’m done.

(I didn’t mean to rhyme, either).

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“They say Jonah was swallowed by a whale
But I say there’s no truth to that tale
I know Jonah
Was swallowed by a song…”

~ Jonah by Paul Simon

Jonah has a broken finger incurred sometime during this morning’s tantrum/attack/aggression, on the bus that takes the kids up to the school building.  They took him to the hospital, x-rayed his hand, splinted his finger, brought him back to the house.  Not an enormous deal but one that caused me some concern.

His regular nurse was so kind when she called to tell me.  “Jonah is fine,” they always start out by saying.  Sometimes he isn’t – not really, but at schools like this everything is relative.  And he is fine.  He is safe and he is fixed up and it is over.

But I asked her to please contact Andy first next time.  Andy lives 5 minutes away.  I live an hour and a half a way.  I have a full time job, and I can’t be at my desk crying, like I nearly always end up doing.   I’m a crybaby, they need to understand, “strong mother” or no, and you can’t make me lose it at work because then nobody wins.  I need my job.  Let Andy call me at 5:30 when I get home from work and then tell me what happened, unless it’s an “he’s not okay” emergency.  Andy’s willing to do this and we’re going to try this new “leave mom out of the loop for a few hours” plan.

I’m tired of the merry go round.  I want off.  After a while it makes you sick to your stomach.  Your horse or your ostrich or your donkey goes up and it goes down, over and over, while the merry go round itself circles round and round, all with the bad-stereo strains of carousel music playing too loud and endlessly, no way off, no one to stop it all.

I just don’t have the fortitude.

for·ti·tude

[fawr-ti-tood, -tyood] Show IPA

noun

mental and emotional strength in facing difficulty, adversity, danger, or temptation courageously: Never once did her fortitude waver during that long illness.
They ain’t talking about me, folks.
Ah, but wouldn’t you rather see some new pictures instead?

Our dog Jack has the United States of America on his nose.  Look closely.

Jonah loving Guardian Gus

Beautiful rosebushes

Thus ends a long Thursday.  Across the miles I am holding my son in my arms, so close, smelling his hair, breathing him in, and he is calm, and we have snuggle time, and we are both swallowed by a song…a lullaby…

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Did you hear they recently linked autism to obesity during pregnancy?   I was a hundred pounds and 5 foot six when I got pregnant, so I guess I’m blowing that theory.  I love the endless links.  It’s almost like they are required by law to link something to autism at least once a week.  It’ll be interesting to hear how Jonah did today because Venus is crossing the sun and won’t do it again until 2117;  it’s been a weird day for me and a bunch of my co-workers too.

Tomorrow I’ll give you my doctoral dissertation about Venus’ crossing the sun, and how that, too, is now linked to autism.

     

But I don’t mean to make fun of autism research.  I’m afraid we’re in the infancy of figuring it all out, though.

Or maybe tomorrow in the newspaper I’ll read they’ve been testing some new non-drug behavioral therapy on children and guess what? it has led each and every one of them out of anxiety and confusion into a place where they feel more comfortable in our fucked up neurotypical world.  Is that the right thing to hope for?

I just want Boo to be at peace with his environment and the people in it.  That’s about it.  I want him to be happy.  I’m not asking for him to take a pill and turn into a “normal” kid.  I just want his demons exorcised, the violence gone, the aggression vanished.  There really isn’t a way to describe how I feel, except very small and very helpless.  It makes me want to gather up every brain cell I’ve got and go get a Masters degree in Autism Spectrum Disorders or Applied Behavioral Analysis, and take all this shit on my own self.  Yeah.  That’s gonna happen.

Jonah’s been good some days and then suddenly bad, throwing his plate,  screeching, and shouting.  I wish I could see at least some of his day, as if on TV.  I want to know what he does and what he says, what he makes in art class and whether or not he manages the cafeteria.  Does he run ahead of the other kids or stay with the pack?  Does he laugh hysterically while throwing puzzle pieces all over the room?  Do they hug him?  Does he run happily to people and want to snuggle?  Does he hurt people, and how bad is it when he does?  Does he get lonely?  Does he think about his mama the way I think about him?

I don’t want him to miss me.

And I don’t like this “transit of Venus” day.  It feels weird.  I’m even writing weird.

  Jonah and his daddy

Jonah loves his daddy so much.  I never doubted Andy would be a uniquely amazing dad to some lucky kid.

Jonah’s that lucky kid.

Now I’m going all stream-of-consciousness and I don’t want to… sorry for the drift-off.

“I know of nobody who is purely autistic or purely neurotypical. Even God had some autistic moments, which is why the planets all spin.”   ~ Jerry Newport

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“We must be willing to get rid of the life we’ve planned,
so as to have the life that is waiting for us.
The old skin has to be shed before the new one can come.”

~ Joseph Campbell

Me & Boo

Window

by Guster

A gaping wound tells the story of it all
A man lost only to find
What was left of his mind
With no hope of a scar at all
You say, “Go slow”
But something’s right behind me
I can run away for only so long
It will not stop
I will come down
Oh no
Let me find my way
I’ll take you to the edge
Go across that window
And I’ll carry you there
Oh when nothing goes right
Oh when days don’t come tonight
Oh when all I see is the error of my own enemy
A man alone and cut and torn for it
His whole life friend after friend
They’re all a flash in the pan
With no hope of rejoice at all
Let me find my way
(Don’t be scared of what you might be thinking)
I’ll take you to the edge
Go across that window
And I’ll carry you….

I love how you can see his reflection in the car window here

What a beautiful weekend this is.  What a happy boy was Boo yesterday.  He is the dawn after my darkest.   Jonah is such a joy…clever and curious…a mischievous boy with a sometimes silly, sometimes subtle, sense of humor.

And this time when we visited the river/train he really wanted to dip his feet in the water.    (The whole thing was my fault because I took off my sandals and dipped my feet in, and then he wanted to also, so we both did).

We splashed around together and giggled and got pretty wet – the kind of wet you don”t worry that much about because it’s sunny and warm enough to dry you pretty quickly.

Jonah, splashing around with Knockout Ned

Captain Jonah surveying the land

for Boo there’s nothing better than water

A patriotic Jonah sports a shirt from “Pa”

Jonah, watching them take a boat out of the water near the dock where he usually sits

After my mom and I left, Jonah stayed with his dad and they likely played some more, hit some of Jonah’s favorite hot-spots.   Again today Andy went to pick up Boo, bring him back to his apartment, give him lunch, a bath,  and spend time with him.

Maybe he will be able to take him overnight some day.  It is enough to have small steps.  It is enough.  Seeds, sprouting slowly, but sprouting nonetheless.

Jonah meditates under his daddy’s careful watch

Today I gardened and gardened and gardened.  I found all the little pots I could and filled them with soil and impatiens, and I dug in the earth and planted some.  Things are about as pretty as they’ve ever been in both my front and back yards.  I weeded as much as I could, and M mowed the front and back, and then we were hot and tired, so we came in and I decided to sit in front of my fan and blog.

My lovely flowers…the key to flowers is perennials, I think.  More perennials.  I am so not a gardener, but when I garden I feel joy.  I don’t use gloves…I need to feel the soil and let the earth move through my fingers.  (You get very, very under-the-fingernails dirty and usually a whole lot of scratches this way, but still it is the only way I can do it).

I’m going outside to take pictures of the friendly flowers and prickly plants and prickly flowers and friendly plants I played with today.

somehow the focus is on that bud off to the right…

I think Emily was correct:

“Hope is the thing with feathers, that perches in the soul, and sings the tune without words, and never stops at all.” ~ Emily Dickinson

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Today, a poem I wrote some years ago, about Jonah’s birth:

When finally the doctors sigh,
speaking masked amongst themselves,
and cut you
howling
out of me, I am but a writhing animal,
drugged and brazen-blind by dazzling alien lights.

Then there are pillows, and silence,
and you are sleeping on my chest

and suddenly I have a star, and the moon,
and everything else unceasingly celestial…
my view so clear I memorize the shape
of every constellation.

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There is a fine line between telling my story “sans sugar” and telling too much, or, worse, lacing it with saccharine.  The truth is, the narrator is still not exactly sure where she belongs in this world, if she belongs in it at all – but also that this doesn’t matter.  It’s all about Jonah.

For an only child like me it’s a tough pill to swallow sometimes.  It isn’t at all about me.  And yet, can I be relieved of my role in all of this?  Of course not.  Jonah needs his mama.

Still I sometimes think:  I can’t live this life anymore

And:   What a nice hot day to park the car at the top of the Rhinebeck Bridge — so perfectly inviting for suicidals – no barriers to your leap, yet reminding you every few hundred feet or so that LIFE IS WORTH LIVING.  I know I have mentioned this bridge before.  I’ve always wanted to fly, and that view is so spectacular, and if I ever did come to that fine line and cross it, I think that would be my place to fly-bye

And:  I wonder if other people have places in their minds, like I do.   My place is like the cyanide pill they ostensibly give you when you go up in the space shuttle.  It is a choice you may never have to make but one that’s comfortingly there nonetheless

I still, though, think:  I have to do whatever it takes to ensure Jonah’s health, education, happiness, and nurturing.  I must ensure everything.  Some of that everything is making sure things can stay the way the are, and it looks like things are going to need my help for that to happen

And I berate myself:  You ain’t going nowhere, fool

And I can dance around things that were said this weekend, and all the millions of ways, as usual, in which I was spectacularly weak.  But I’ll post pictures too, for Jonah was mostly good, albeit scattered and frenetic.

It was a sunny day, almost too hot.  A beautiful Saturday, and a good portion of Jonah’s day and mood mirrored that.

Andy was kind enough to drive Jonah up to visit us at my mother’s house.

my mom’s next door neighbors kindly let jonah use their play-set and pool, once it’s opened. jonah asked for “Pool?” a dozen or so times.

At home way at the top, my climber-boo

hey mama!!! hey mama!!!

Eventually he wanted to go see train so we piled in the car, Jonah singing along to the Top-40 Andy’s got on the radio.   We were relieved to see the green light down the tracks meaning a train is coming, so we pulled into a parking lot to wait and watch for it, like we’ve done hundreds and hundreds of times before.

This time, though, he got scared of the train after a few seconds.

This was the last of the pictures for the day.

Out of nowhere he grabbed for my hair.  I know what to do when someone pulls your hair (grab their fist and pull it in toward your head) so it wasn’t a big deal.  Andy got out of the car to let me out of the car, and then Jonah burst into tears, sobbing and upset.  Within minutes, though, he was okay and we were able to say bye bye to the train (thank God it wasn’t a long one) and go back to Grandma’s for another shower.  His beloved train reminded him of how much he misses home?  No.  Don’t invent things inside Jonah’s head, I tell myself.  You’ve got enough troubles inside your own. 

Today M and I went on a long Sunday ride, just like in the olden days when it was deemed neither wrong nor unusual to do so.  When we got home I planted flowers in the God-awful hot for about 13 minutes until I felt I would die.  I thought about Andy, and how unless I am mistaken he is working for somebody today doing some mulching under this same heat, and how under that same sun too my boy probably asked for pool ad infinitum.

Tomorrow I have to go back to producing numbers; here I can produce words.  It’s a fine line, my tightrope.  Sundays are difficult.  And I only took 3rd place in a “query letter” contest I was hoping to win.   And I’m not schooled in query letters.  Looks like I have some work to do.  First place was the opportunity and $500 to self-publish.  

I don’t really want to self-publish anyway.  Isn’t that, after all, what I’m already doing?

Anyway.  Jonah has his daddy close-by.  Today, after all that hot work in the sun, Andy came and got Jonah and kept him for another part of the day.

“He was fine,” Andy told me on the phone. “He had a fun day.”

For me, for now, it is enough.  As usual it is still only early evening and I am bone tired.  I imagine Jonah settling in to sleep.  I miss watching him sleep but imagining it is sweet — I can use memories and visions and dreams.  It is good.

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“And this is why my eyes are closed
It’s just as well for all I’ve seen
And so it goes, and so it goes
And you’re the only one who knows

“So I would choose to be with you
That’s if the choice were mine to make
But you can make decisions too
And you can have this heart to break

And so it goes, and so it goes
And you’re the only one who knows…”

And So it Goes, Billy Joel

The phrase “and so it goes” appears 106 times in Kurt Vonnegut Jr’s book Slaughterhouse Five.   The story continually employs the refrain “so it goes” when death, dying, and mortality occur, as a narrative transition to another subject, and to explain the unexplained. (from wikipedia)

This morning was the first of 5 doctor visits for Boo up here in Albany…and each time he’ll be escorted by his peeps, E & J.  Today we saw Dr. S, the glaucoma doc who is borderline strange but quite efficient, matter of fact, businesslike,  and nonplussed * unaffected by Jonah’s colorful personality. 

The nurses and staff all know us by now and are very kind to Jonah.  When we go there we wait in the hallway outside so Jonah can pace around, and they come out to get us when doc is ready.  In the meantime Jonah frolics in the hallway, crouching and running and shouting happily.  He loves E & J.   I love them too.

J put gloves on Jonah, and they played high five and gimme the pound, bumping fists.  Jonah’s getting to be such a good boy at his doctor appointments.  He is brave and sweet and funny.  Even if I’m under some sort of mother-spell skewing my perception completely, it feels good to have seen him, all lovey and silly.  Precious Boo.

He’ll need another eye operation; they want to take the Reticert implant out.  It’s been there 2 1/2 years now and Dr. S wants it out soon, so Jonah will have another appointment with Dr. S, but first an appointment at the pediatric rheumatologist, a pre-op appointment at the eye surgeons, then the surgery itself, then follow up appointments, etc.  Can you imagine if I didn’t have E & J?  Andy or I would have to pick him up and drop him back off every time.  The transportation to and from doctor appointments, paired with two individuals like J & E, is an invaluable service and responsibility.  I have no idea how they do it.  Thank God they do.

You probably can’t tell, but he’s laughing his head off here, wearing his exam gloves and knocking on the door three times, shouting “knock knock knock!” each time.  Little peanut butter, E calls him. He wanted me to give him noogie and knock knock knock lightly on his noggin, silly with giggles and ready for mischief.  Wan go van? he’d ask J on occasion, and J would distract him with lists of delicious things to eat:  french fries!  pizza!  bleu cheese! circle pepperoni

When it was time to go I kissed Jonah soundly as he settled into his cushion-y nest they’d made for him in the back of the van.  I entrust him to others. 

I have to, but with E & J, I am actually glad to. 

* I believe that most people misuse the word “nonplussed” – including me.  I always thought it meant “unfazed.”  Turns out it means exactly the opposite.  

So it goes.



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Today Jonah was a little lover, if a bit screechy and semi-hysterical.  I guess the usual.  Only one small glasses-snatching hair-pulling incident, but Andy pulled over and got him off me.  “Daddy in backseat?” asks Jonah incessantly, but neither my mom nor I can drive Andy’s stick-shift car so Jonah’s gotta choose between grandma or momma to have in the backseat with him.  “Momma in backseat?”  he decides in the form of a question.

He requested “Noogie?” right away.  I guess that’s how you spell it – when you rub your fist into someone’s head.  He loves playing knock knock knock on his head too, and though it had fallen out of fashion, his new gimme-the-pound (where you bump your fists together) has brought back the memory of his sensory-input fiesta.

Speaking of Fiestas, it is Cinco de mayo.  “Say cinco de mayo,” I told Jonah.

“Cinco tomorrow,” he answered with his big grin, shaking the maracas I’d brought him.  The pictures tell the story, a good one today, thank God:

(Watchdog Wally’s holding the maraca)

He’s shaking the maracas so fast that the one is blurry…

My big Boo, watching his beloved water…

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To the best of my knowledge Jonah has been a very good, happy boy for the past 5 days or so.  Why?  Nice spring days again.  Playing outside, swinging high in the sunshine.  The right dosage of meds finally.  Divine intervention.  Right now I don’t care.

Yesterday when we sent to see Jonah he was a very good, happy boy – and we did the usual things but he was having so much fun, laughing and singing, giggling and lovey.  I took a few great pictures that capture his joy, and the feel of the day…

My mom drops me off after the visit and we look at one another:  my long, bony hand holds her long, bony hand — and we say, sometimes in tandem, “Thank God.”  I remind myself not to hope.  Wait, that’s not quite right.  Always there is hope inside me.

It’s more like the expectation of permanence I need to dissolve.  I am so grateful.  Now.  Now.  I am grateful now.  Stay in this place, Amy.  It’s the only place to be, really.  Anything else is an illusion, the voice inside tells me.

“You must live in the present, launch yourself on every wave, find your eternity in each moment. Fools stand on their island opportunities and look toward another land. There is no other land, there is no other life but this.”

~ Henry David Thoreau

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