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Archive for August, 2011

the push of the divine

Posted in autism, placement, The Anderson School for Autism, Uncategorized, Wildwood, tagged , , , , , on August 11, 2011| 4 Comments »

I’m at the point where I just want it to be Tuesday.  I want to go, get it over with – to do it instead of dread it.  I’m tired of being sapped of life and joy, breath and motivation.  It’s starting to feel like I’ve chosen this misery.

Today was Jonah’s last day of school at Wildwood. Thank you so much, Wildwood.  No words can express our appreciation that there is such a wonderful school; Jonah was so lucky to be there for 6 years.

I have so much to be grateful for – there are so many people who care.  Yesterday I got a package from a business networking guy I know.  Inside was a card from him and a beautiful hand-crocheted twilight-blue stole from volunteers at his church.  My hands shook as I read his card and the church’s handmade card and message.  Feeling something almost like shame, I clutched the stole and cried into it.

Then, a lady I am in contact with only by phone and e-mail sent me a long letter about how her son has autism too – something I’d never known.  The letter was full of encouraging, positive sentiments and suggestions for Bible verses for me to read.

My friend H continues to generously offer her pool, and friend K gave me hope – and e-mails me SNL skits to make me laugh.  M encourages me with loving words, and today he also e-mailed me a verse:  Jeremiah 29:11:  “For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.”  My aunt texts me messages telling me how much she loves me, to call her anytime, that she is praying for me.  New online friends and past acquaintances, family, friends, everyone envelops me in love and light.

Seems like Divinity is yelling at me from all directions:  Have faith!  Have hope!  I’ll take care of everything.  There is no denying the push of the divine – it’s all around me.  I’m grateful for it.  Every morning I wake and cry, my throat so tight I am almost gasping to breathe –and as the day progresses I become calmer.  I can smell the rose and blow out the candle, and there are long moments of peace.

The push of the divine is gentle but firm, like a tight hug.  I am hugging back, hanging on.

A few more pictures:

happy boo

chillin’ in the pool

water boy

…baby boo,

Mama loves you.

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fence posts and flowers

Posted in autism, behavior, Uncategorized, tagged , , , , on August 8, 2011| 6 Comments »

“Welcome…
You’re under control
And buried like a mole
A thousand feet below

Waiting
With all that we’ve got
Our reputation’s shot
A ninety-story fall

No one here can make a sound
We’re all ghosts in this town
We are standing in the trenches
Of the new underground

Pipe down
Stay under control
It’s getting so absurd
Soon everything will turn

It’s that time
To see the Sun
There’ll be a crack
And a day will come
Maybe then we’ll be the ones;
Never can be sure
The shot heard ’round the world…”

lyrics by Guster
—–
—–
M and I took Jonah in the afternoon on Saturday and the morning on Sunday.  I have been taking all kinds of pictures so I can return to them, and to boo, whenever I want…
——-
even when he moves to hit the car window, or a person, with a smile on his face
——
& yet stay calm as we stop to say hello to a beautiful doe
——
he can sit still with safe hands and body
——
but tick tick tick tick tick tick tick tick tick
goes the Jonah time-bomb.
——
The is always an explosion.  With shrapnel and wounds.  And yet I still, God help me, don’t want to let him go.  I want a hero to come out of nowhere, an Autism Super Nanny who’ll whisk in at the last moment to “therapize” the anger right out of him and get to work on making him a normal kid with autism.
——
It’s almost funny. I’m not asking for a ‘normal’ kid.  I just want a normal-kid-with-autism.  I know there is no such thing.  I don’t know what I mean.  I’m slipping down the slope, Buddhist practice notwithstanding.  Cherish me, cherish you.  Breathe.
——
I understand every time someone tells me I am doing the only thing there is to do – that we’ve exhausted all possibilities – that he will get better at the residential educational home.  It’s not that I can’t or don’t comprehend these things.  But I feel this way anyway.  Frantic.  Frightened.  Fucked up.
——
My great friend K and I had brunch yesterday after M and I had taken him for the morning.  I kept beginning sentences and then stopping them abruptly, swallowing hard…
——
“and the steel eye, tight jaw, say it all…” ~Cake
——
…she understood and, after a pause, would tell a funny story or take the conversation in a different direction.  She let me talk but she knew exactly when to steer the topic away from what would make me cry.  That’s a skill, and she’s got it, and I’m grateful.
——
After brunch, she brought me to her car and said she had a present for me.  I was shocked.
Inside the gift bag was this this:
——
Good thing we were inside her car because I started to cry, and hard.  I loved it.  She could not have chosen a better present for me if she had looked all over the world.  I hugged her and held her tight.
——
HOPE – made of fence posts and flowers.
——
She literally gave me HOPE.

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a week and a day

Posted in Anderson School, autism, behavior, placement, Uncategorized, tagged , , , , on August 8, 2011| 2 Comments »

I’ve gone through a time bending worm-hole.  It was six weeks away, and now it is a week and a day.  I will pour myself into work, twice as much as usual, for I’m taking next week off to do this thing and then process it best I can without having to think too much. 

I keep calling it this thing like it doesn’t deserve recognition in any other terms.  My God, I’m going nuts.  Off the charts.  Just mailed the direct care workers at Jonah’s residence letters and pictures and my blog address, cell phone number – as much information as I could muster about my precious, barely-verbal boo. 

Also I sent thank yous – expressions of gratitude for what they do and deal with every day, for choosing to help these children and face injury and shit smears and God knows what else – all for less money than they deserve, undoubtedly – for what they do is priceless.

I hope this week and next week fly by.  I hope I can go far inside my head, into a Novocain-place, into numbness and ennui, even when I must be awake to work & think.  As oxymoronic as it sounds, I want the foundation of my days to be a state of sleep from which I can wake later, later.  Some other time.  Some other place.

I don’t want to live through this.

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baby chick head

Posted in autism, behavior, haircut, swimming, Uncategorized, tagged , , , , , , , , , on August 5, 2011| 1 Comment »

Jonah had a relatively good day in school yesterday, which was very cool to read in his log book – he’d gone roller skating and loved it.  He loves yoga too, and his scooter they pull him around on with a weighted-vest.  My sensory-craver boy…

Then D came over and Andy and she and I brought Jonah and the clippers outside, to the outlet halfway down the driveway – and between the three of us, we buzz-cut his hair.  D did the actual buzzing while Andy held Jonah and I sat on the driveway holding Jonah’s legs between Andy’s legs so he couldn’t kick or thrash.  He was hopping mad, of course.  It looked like a circus act, with hair flying everywhere and Jonah twisting around.  Good thing the neighbors weren’t out.  Afterward we had a near-bald boy who immediately ran inside to look at himself in his bedroom door mirror and run his little hand through its baby-chick-head softness.  I went outside to the driveway where all boo’s hair was scattered and picked up a lock.  Maybe it is silly, but I want it to hold when he is gone and I can’t be with him.

Of course he gave D and I plenty of trouble on the way to H’s house and pool.  Safe hands? he’d ask D, wanting her to hold both his hands.  She’d turn and hold his hands, then he’d try to pick his nose or swipe stray hairs from his face, so she’d let go, only to have him beg for safe hands again.  Over and over.  He kicked the back of D’s seat and head-rest, hit the windows HARD, flat-palmed, and screamed his loudest, his someone-is-murdering-me screams, laughing and giggling afterward.

What?  D and I would ask each other, unable to talk above the noise.  No wonder I am going for a hearing test this afternoon.  Between Jonah, my concussion, and all those loud 70s/80s/90s concerts I saw (like KISS, Rush, Def Leppard, Jane’s Addiction, and every other band where I’ve sat too close to the speakers on purpose), my ears are suffering.  I always did like my music loud.

Then Jonah started to beg for hot dog.  Hotdogwithmustard?  he asked repeatedly.  Hotdogwithmustard?  My plan was to stop at Stewart’s on the way to H’s, but then I called H and she said she still had some from the last time I brought some over, so she prepared one in her microwave, God bless her, so it would be ready upon King Jonah’s’ arrival.

Finally Jonah got both his naked swim and his hot dog and all was right with the world for a few moments, though the entirety of our visit was maybe 15 minutes, tops.  ADHD?  D and I were half-jokingly recalling the blessed days (which we used to complain about, believe it or not) when he would perseverate on just one thing at a time.  Let’s ride the escalator 75 times!  Let’s stare into the street sewer for a half an hour!  Let’s go on the merry-go-round 8 times in a row!

Going on the assumption that most folk prefer pictures over poetry, I’ll make sure to come back later and post some.  I might even upgrade my account so I can post video.  I’m taking pictures and video of Jonah with ever-increasing frequency, as if I can capture and visit him whenever I want.

“The candlelight flickers
The falcon calls
A lime-green lizard scuttles down the cabin wall
And all of these spirit voices
Sing rainwater, seawater
River water, holy water
Wrap this child in mercy…”

~ Spirit Voices by Paul Simon

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a month, a week, another day.

Posted in Uncategorized on August 4, 2011| Leave a Comment »

I am human,
keen with need.

From birth I discern an infant ability,
a higher order of helplessness:
my just-hatched hands redden & reach
for milk, warmth, a return to the womb

The open palm of desire,
it wants everything…

trucks & blocks, the training wheels gone;
park place, boardwalk – mine – with two hotels on each;
a year’s supply of bomb pops & bazooka joe.

wants everything

golden fairground frying dough, silver stapled stars,
the complete collected works of Everywriter;
watered gardens gifting greens, a son, albeit silent…

It wants soil soft as summer

tenderness.
a yielding bouquet, the feeling in my center
up against another
up against the wall
the kind of time that gets
away
so at the last I want
the strength to let you go
a month, a week, another day.

~ Italicized lines are lyrics from the song Further to Fly by Paul Simon

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sgt. jonah’s broken hopeful hearts club

Posted in autism, behavior, The Anderson School for Autism, Uncategorized, Wildwood, tagged , , , , , , , on August 4, 2011| 5 Comments »

In preparation for Jonah’s new chapter in life we are (hopefully successfully) going to give him a buzz cut tonight.  Sitter/cousin D is coming over to help Andy and me- and with the 3 of us we should be able to get ‘er done.  Then, if it clears up and is nice later, D and I will take him to friend H’s to swim. 

I am starting to think ahead, beyond the time when Jonah goes away.  Before this I was simply thinking of it as a doomsday clock – that everything would come to an end on August 16th – that there was no point in thinking beyond this day or its inevitable heartbreak (and relief?).

My fantastic therapist, Dr. Alex, mentioned that I maybe should make a (real or metaphorical) social story for ME.  I’ve made one for Jonah and something like one to send to his care workers, but one for ME might help me prepare emotionally – to help me not block out, ignore, or go numb about all of this, which are the defense mechanisms I have been using.

Jonah has been awful at school.  Where usually he would be at camp during summer school, this year he has been disallowed (and, unfortunately, rightfully so) because of his behaviors.  I’m so happy the Anderson School has such a big, nice pool so he can swim.  At Wildwood he has been what they euphemistically call “smearing” almost every day.  YUCK.  Then they have to shower him and clean all the shit off him, the walls, themselves – and probably endure scratches, bites, and kicks in the process.  The dedication of these direct-care workers amazes me. 

It would be one thing if they were making the money they deserve, but the money just isn’t there.  I wish they could have a capital campaign earmarked specifically to raise salaries of these incredible individuals.  I am so grateful for them I want to fall at their feet and sob out my thanks, in my usual over-the-top style.  Instead I will make them gift bags and pray they’ll know, somewhere in their hearts, how much they (and Wildwood) have meant to us and to all the children who need them.  What a wonderful school. 

Here’s Jonah learning emotions, a year or two ago, with his speech teacher, L.  In an earlier post I put up a picture of “excited face.”  Here is “mad face” :

If Anderson is anything like Wildwood I will be so relieved. 

I have received ever-increasing support from everywhere – people e-mailing me, leaving comments here – people who don’t even know me, or who knew me from my childhood.  People I’ve met both virtually and personally who’ve been through this or are going through it…we’re like Sgt. Jonah’s broken hopeful hearts club band.  I am not alone.  I am not alone.  It is my mantra and I cling to it like a proverbial rope you climb to get up and back over the cliff.

I yearn for Gina, for she was my sister-in-spirit.  I yearn for siblings, for I have none.  But I don’t want to yearn.   I don’t want to worry.  When I don’t want to worry I think of this Bible verse:

“Look at the birds of the air; your heavenly father feeds them. Are you not much more valuable than they? Matthew 6:26

Stay focused, Amy.  Have faith.  Stay busy, stay optimistic, stay positive. 

And don’t forget to breathe.  When I want to remember to breathe I think of HH the Dalai Lama:

Practice for the New Millennium by the Dalai Lama

1. Spend 5 minutes at the beginning of each day remembering we all want the same things (to be happy and be loved) and we are all connected to one another.

2. Spend 5 minutes breathing in, cherishing yourself; and, breathing out cherishing others. If you think about people you have difficulty cherishing, extend your cherishing to them anyway.

3. During the day, extend that attitude to everyone you meet. Practice cherishing the “simplest” person (clerks, attendants, etc) or people you dislike.

4. Continue this practice no matter what happens or what anyone does to you.

These thoughts are very simple, inspiring and helpful. The practice of cherishing can be taken very deeply if done wordlessly, allowing yourself to feel the love and appreciation that already exists in your heart.

I’m trying; I’m learning.  I’m grateful. 

I just hurt.

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womb magic

Posted in Anderson School, autism, tagged , , , , , , , on August 3, 2011| 6 Comments »

When Jonah was a baby, I wrote him some poetry.  My best friend Gina shot and killed herself when boo was just 7 months old, and in my grief I went on a writing frenzy.  They say the writing saves the writer and I know they’re right.

I need to write my Capital District Parent Pages article for September; it is due soon.  What to say?  I will submit it before he is gone, and it will be published and distributed after he is there.  I may go back in time, like I did for my July article, where I spoke mostly about his natural swimming ability.

I have been re-visiting his past – my pregnancy, his babyhood, everything that led to now.

There is a poem I called Womb Magic – and parts of it again ring true; eerily similar to now.  After wanting a waterbirth, I had to have a c-section; it was the opposite of what I’d wanted, just like this.

I need more magic, more faith.  More freeing of my mind from worry.  God help me but as the days draw to their inevitable beginnings and ends I feel rising panic in my throat, my gut, my heart.  Please, God, help me.  Help Andy, help Boo.  Please help me.  Please and thank you.

I am so grateful for everyone who reads, who reaches out, who understands, or tries to, who reassures and cyber-hugs me.  I am grateful I have this place where I can come and bitch or ponder, express the pain or the wonder or the anxiety.  Shaking, I continue because there is no choice but to continue.

In the mornings I listen to beautiful music that carries me away – Mozart, Vivaldi, Beethoven, Rachmaninoff.  I let it enter me and soothe like balm.  On the way to and from work I play Guster, LOUD, singing songs I know so well they are a part of me now.

Anyway, I thought I’d share the poem, for ‘cooking a baby’ isn’t easy – and may well be compared to magic – just like letting go of one (who seems like my baby, even though he’s 9) isn’t at all easy.

Womb Magic

Two rehearsals went awry.

First I stumbled, dropped the wand
I heard the heckling audience’s hiss

and then onstage I felt
I froze
I felt
unsympathetic ruby spotlights
stealing all the magic words
I ever knew.

Of course there is a trick to it.

I was under the illusion
I was under
it
would be effortless, the show’d go on
without me after all it was
a commonplace performance for the man
behind the curtain, for all the men
behind every curtain

and I said
if I was not the world’s best
well I could always adopt another occupation
I could take on an apprentice I could
quietly retire

but then
in time
at last
suspending
disbelief

I conjured you from soul and cell and bone
with nothing up my sleeve
in one swift sleight of
hand

and pulled,
to rave reviews,
a living breathing rabbit
from an enchanted empty hat.

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the august article

Posted in Anderson School, placement, tagged , , on August 1, 2011| 8 Comments »

I’ve been writing monthly articles in the Capital District Parent Pages for almost a year now and the August column was the hardest one I’ve had to write yet.  How do I say what’s happening?  I edited it about ten thousand times.  The issue came out today.  For those of you who don’t get the Capital District Parent Pages, here’s what I said:

Normal is a Dryer Setting

August 2011

Well, here we go.  Sometime during the week of August 15th, Andy and I will drop Jonah off at an educational residence for children with autism; he’s been accepted in both an appropriate house and classroom there. 

It’s a beautiful campus.  Really. The classrooms are cheerful, the staff is engaged, the kids look happy, and the children’s residences are real houses – immaculate duplex-like homes where Jonah will even have his own room.  There’s a recreation center and a big pool, and Jonah will be able to go out into the community, to movies and restaurants, playgrounds and museums.  He can’t do those things anymore here.  I know in my heart that Andy and I can’t provide the therapies he needs; this is Jonah’s chance to truly thrive.

I must sound like I’m trying to justify our decision, to convince you we’re not throwing our child away.  The truth is I have no idea how to do this thing.  I have to believe Jonah will be protected and happy.  I need to imagine him learning and laughing.  There is no other option if we are to drop him off and drive away.   In the meantime, I cry.  I have nightmares, nagging thoughts of negative scenarios.  My head fully understands the necessity and wisdom of moving him there, but God, my heart.  Each day is another day closer to that inevitable day, and my heart mourns.  I’m grieving for him even though he isn’t yet gone.

I’m going about it all wrong, I know.  What you focus on expands, they say, so I’m going to stay focused on the good stuff – like giggling when Jonah, apropos of nothing, invents a goofy phrase.  Or hearing him shriek with delight when his lithe body hits the surface of the swimming pool.  And chasing him around his bedroom with a towel to wipe away bath bubbles still clinging to his body.  Watching him sleeping, tranquil, his breathing slowed and deep…pressing small kisses into his cheeks…inhaling the little-boy-scent of his tousled hair. 

I‘ll concentrate on shopping for things he needs for his room.  I’m splurging on the best of everything there is – Egyptian cotton sheets and thick, luxurious bath towels in bright, primary colors.  A late-afternoon-sky colored comforter with a floor rug to match.  The softest blanket I could find.  I want him to be comfortable. 

I’m making him photo albums he can’t rip and filling them with pictures of all his relatives, the people and animals he knows, and the places he’s been.  I want him to remember his loves.  I want to be able to explain to him what is happening: mom and dad will be back, and this is a new and exciting place to grow, play, and learn.  I’ll write a social story – something often utilized to explain a concept to kids with autism using short sentences accompanied by pictures. 

Everything changes.  This is a new chapter in a new book.  Maybe even a whole new library.  I’m grateful to everyone who has made places like this available – and so much better than they once were.  I’m grateful to those families who’ve endured tragedies and had the courage to turn them into advocacy for things like access-to-information laws and changing the system for the better, to protect my son and others like him.  I’m grateful I live in a country where services are provided for people with disabilities, and a state in which lawmakers now recognize the importance of ensuring safe educational residences for people who need them.  I’ll never complain about taxes in New York again.

Still, though, it’s all so surreal and unthinkable.  I want to be a parent advocate for other people going through this process.  If I can be a comfort to just one other family, it will help.  The knowledge that you are not alone in something is invaluable; I know I’m buoyed by the parents I’m in contact with who’ve had to do this too.  

As Jonah goes away, I will be visiting him as much as possible, ensuring he is happy and safe, and loving him with more strength than I ever have before.  So goodbye for now, little boo.  Once you are in the hands of a round-the-clock team of specialists, you will bloom into the best boy you can be.  Your mama knows you are bright and silly, fun and eager to learn.  You show ‘em, sweetheart.  They’re going to love you.  I just know it.

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