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Archive for June, 2012

the bottom of all this

Posted in Uncategorized, tagged , , , , on June 25, 2012| 2 Comments »

Those of you who can find the thread in the midst of all my tangents and ramblings may be wondering what is happening with Jonah’s eyes.

Two or three blog posts ago (the eyes have it) I said:

“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.”

Luckily, before I needed to ‘play my ace,’ the doctors decided to talk to one another.  For now we’ve all come to the conclusion that the Reticert implant is best left in place for now, even though the thing is nearing the end of its efficacy anyway. 

Plus now there is all this concern about the “activity” in his right eye.  The new drops have mitigated it so far, we’re told.

Next we’ll go back to the pediatric rheumatology doc and find out about another drug she may want to try.  I like her; she’s cool, knowledgeable, and kind with Jonah.

Still, I feel like we’ll never get to the bottom of so many things.  But maybe that’s all right.  It has to be all right.  I don’t have any choice but to learn what I can comprehend and weigh options with Jonah’s dad and all the endless scads of doctors. 

It’s like looking at my boy through the water, all refracted by light and liquid.

Boo likes to be underwater

Jonah likes deep pools best where he can swim to the bottom and ‘merboy’-himself along as if finned. 

At the bottom of all this is Boo.  It’s always been Boo.  Like Mitch Albom, Jonah tells his mama:  We’re not a wave.  We’re part of the ocean. 

But whales live in the ocean, Boo.  Ones that swallow Jonahs who’ve been insubordinate. 

“…(and) you can’t hide; standing under these stars
They know everything… they know where you are.
You’re in your head, you’re all turned around with it
And they’re shining down their light to bring you back again“

~ Careful by Guster

So soon we will know more, about both Boo’s eyes, and maybe try harder to get him to wear sunglasses for his light-sensitivity.  And I keep files and notes during doc-conversations so I don’t forget details.  If I cannot parent him I can advocate for him.  And others like him. 

I miss him so much tonight, though.  Usually I don’t let myself think about it, about him not being with me.  But sometimes because of a scent or a sound, all at once I have a punched-in-the-gut feeling, and I miss him like the day we dropped him off.  My God, it’s been almost a year. 

He has made a lot of progress.  He is toilet trained nearly completely and his language and social skills are coming along.  You can ask him a question now and usually he’ll answer it. 

“How is your sandwich, Jonah?”

“Good.”

It used to be more like:

“How is your sandwich, Jonah?”

“How is your sandwich, Jonah?”

And still he parrots, but he can make his needs met and now he will initiate conversation.  He says hello to teachers and the nurses, and his caregivers too.  Now he is so much better at communication.

shoes on please?

He’s independent, too.  His life has routine, and ritual, and he’s surrounded by people who know how to teach kids like him.  I don’t know what I’m on about.

Off I go to breathe and eat.

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slip kid spit kit

Posted in swimming, tagged , , , , , , , , , , , , , on June 23, 2012| 1 Comment »

“I’ve got my clipboard, text books
Lead me to the station
Yeah, I’m off to the civil war
I’ve got my kit bag, my heavy boots
I’m runnin’ in the rain
Gonna run till my feet are raw…

Slip kid, slip kid, second generation
And I’m a soldier at thirteen
Slip kid, slip kid, realization
There’s no easy way to be free
No easy way to be free

It’s a hard, hard world

I left my doctor’s prescription bungalow behind me
I left the door ajar
I left my vacuum flask
Full of hot tea and sugar
Left the keys right in my car

Slip kid, slip kid, second generation
Only half way up the tree
Slip kid, slip kid, I’m a relation
I’m a soldier at sixty-three
No easy way to be free

Slip kid, slip kid

Keep away old man, you won’t fool me
You and your history won’t rule me
You might have been a fighter, but admit you failed
I’m not affected by your blackmail
You won’t blackmail me

I’ve got my clipboard, text books
Lead me to the station
Yeah, I’m off to the civil war
I’ve got my kit bag, my heavy boots
I’m runnin’ in the rain
Gonna run till my feet are raw

Slip kid, slip kid, slip out of trouble
Slip over here and set me free
Slip kid, slip kid, second generation
You’re slid’ down the hill like me

No easy way to be free…”

~ Slip Kid by the Who

I have purchased a home DNA kit and I have spit into the spit kit as instructed and returned it via US Post Office to Californ-I-AY.  In two to three weeks I will know how much I am of each piece of what I am.  I will know genetic markers for predispositions to disease, and I will be able to provide Boo’s doctors with important genealogical information they all say they wish they had.  It also will be able identify blood relationships if they are 1st cousin or closer.

I’m thinking who do they have DNA on?  Then I realized:  Famous dead people and criminals, and the handful of people like me who have done this DNA test.  I seriously doubt Laura Ingalls Wilder and me, born 102 years apart, are first cousins.  But I could, sadly, be Jeffrey Dahmer’s cousin.   Or Snooki’s, which is almost as bad.

Pandora’s Box, I know.  I know.

Going to see Boo this morning at my mom’s house; Andy is driving him up.  My mom’s next door neighbor said we could use their pool so it should be awesome.  Beautiful day.  I’m drinking coffee and playing records on my new little turntable M bought me the other day as a surprise.

I listened to Rachmaninoff’s Piano Concerto #2  (I always liked the “Rach 3” better, but #2 was Gina’s favorite and so I listen to it a lot).  I can be with her when I listen to it.  It’s been almost ten years since she killed herself and I have yet to find anyone who looks so forward to the Philadelphia Orchestra coming to SPAC as me.  Maybe my friend Dimma is close.

Under the stars with wine and cheese on a soft lawn with quiet folks and a gentle breeze to the warmed-up evening.  A half-circle half-outdoor amphitheater.  Inside is great too.  Gina and I once finagled front row seats to an Itzhak Perlman (the famous Israeli violinist)  performance.  He has polio and must sit for his performances, which brought him even closer to us.  My God I tell you it was like being wrapped up in something so wonderful we could hardly breathe.

Oh Gina.  Maybe I’m related to YOU!  Do they have your DNA?  Do they take some when you die?   I tried to watch a layman’s cartoon lesson on DNA strands and chromosomes etc. but I don’t even have the foundation of basic knowledge on which to build any understanding of it all.  Obviously I skipped chemistry and physics in favor of a creative writing class.

10 HOURS WENT BY

…and it is late evening.  Oh how Boo loved swimming in the pool today!  He was a happy, playful, lovey boy and we had a wonderful visit.  I will leave you with some pictures:

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el dio de los padres

Posted in autism, Uncategorized, tagged , , on June 17, 2012| 4 Comments »

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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the eyes have it

Posted in Anderson School, autism, behavior, doctor, Uncategorized, uveitis, tagged , on June 15, 2012| 1 Comment »

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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swallowed by a song

Posted in Anderson School, autism, doctor, hospital, The Anderson School for Autism, Uncategorized, tagged , , , , , on June 7, 2012| 5 Comments »

“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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there will come soft rains

Posted in Uncategorized, tagged , , on June 6, 2012| 3 Comments »

There Will Come Soft Rains

There will come soft rains and the smell of the ground,
And swallows circling with their shimmering sound;

And frogs in the pool singing at night,
And wild plum trees in tremulous white;

Robins will wear their feathery fire,
Whistling their whims on a low fence-wire;

And not one will know of the war, not one
Will care at last when it is done.

Not one would mind, neither bird nor tree,
If mankind perished utterly;

And Spring herself when she woke at dawn
Would scarcely know that we were gone.

~ poem by Sara Teasdale – featured in Ray Bradbury’s short story of the same name.

Here comes the book snob in me but it is amazing how many people I approached today with this conversation, or some similar variation:

Me:  Ray Bradbury died today.

Them:  Who’s that?

Am I wrong to be incredulous?  Didn’t people have to read Fahrenheit 451 in high school?  He wrote it in 1953, for God’s sake. I thought he was far more iconic.  He was for me, and I mourn him, anyway, though he was plenty old. 

I don’t try to describe the future. I try to prevent it.
Ray Bradbury
 
As for Jonah, he got into some sort of trouble yesterday with another kid or two, a tangle of aggression.  He also tantrumed in his room and hit his head on the windowsill, and has some bruises and a black eye.  His nurse M called me today to tell me.  Thank you, I said to her, because it is what we say to people when they have provided us with information.  Sometimes I say I’m sorry but then that’s dumb too.  This is exactly why he is living there, away from home.
 
If I wanted to, I could worry and wonder about his bruises.  I could be paranoid or over-cautious and secretly install a camera in his room or something.  Anyone can use surveillance nowadays.  It’s 1984, to name another iconic work of literature.   Here we are.  Everyone everywhere is watching, not just Big Brother. 
 
But then there is the trust that is absolutely essential to do what we are doing and remain sane.  Without it I would be a stark-raving paranoid mother, surely using secret surveillance devices to ensure the satisfactory care of my son and showing up randomly once a week to make sure he’s okay.  I’d be up nights imagining terrible scenarios, worrying about every minutia of Jonah’s care and life.  Sometimes I feel like a bad mother because I’m not stark-raving paranoid.
 
 
 
Just as Ray Bradbury tried to prevent the future (as he said in his quote), so I wish my mind’s manufacture of the future would grind its gears and stop.  It’s not even a matter of imagining a better future. 
 
There is only now, say the fortune cookie.  Now and now and now.
 
All covered in soft rains.
 

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why did the venus cross the sun?

Posted in autism, behavior, The Anderson School for Autism, Uncategorized, tagged , on June 5, 2012| 1 Comment »

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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