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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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the rowers keep on rowing

Posted in autism, behavior, swimming, The Anderson School for Autism, Uncategorized, tagged , , , , , , , , , , , on July 27, 2011| 6 Comments »

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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now & now & now & now

Posted in autism, Uncategorized, tagged , , , , , on July 27, 2011| 3 Comments »

“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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his dolphin-happiness

Posted in autism, behavior, swimming, Uncategorized, tagged , , , on July 19, 2011| 5 Comments »

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 will always be your mother

Posted in Anderson School, autism, behavior, placement, swimming, The Anderson School for Autism, Uncategorized on July 19, 2011| 3 Comments »

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.  Worthless.  You 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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the necessary path

Posted in Anderson School, autism, behavior, doctor, placement, The Anderson School for Autism, Uncategorized, tagged , , , , , on July 14, 2011| 4 Comments »

“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 the upside

Posted in autism, Uncategorized, tagged , , , , , on July 5, 2011| 2 Comments »

“…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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aftermath

Posted in Uncategorized on July 5, 2011| 6 Comments »

That same day, as I lay across the bed trying to think about nothing, I of course thought of something.  What I thought was this:  if I called the Anderson School, they might have some news for me.  Will they admit him or not?  If so, when?

So I called the admissions department, got voice mail, and left a message.  M came home a few hours later and we turned on Match Game.  When the phone rang at 5:30pm, Anderson Center came up on the caller ID.  I picked up the handset and a voice spoke and the voice told me Jonah has been admitted to the school and the residence as well. 

They are thinking mid-August for the actual move.  It is strange how I spoke calmly with the admissions counselor for about 15 minutes, asking questions, writing down classroom ratios, phone numbers – details I’d probably already learned.  Finally, a fog of shock descended, making it difficult to speak. 

I thanked her, hung up, ran to the bathroom, and threw up.

Then I lost it completely, sobbing in M’s arms, the fog-shock all around me.  I felt a strange mix of panic, guilt, incredulity, rage, and a breath-knocked-out-of-you grief.  It was what Oprah likes to call the ugly cry, with snot and drool and gasps for breath between fear-filled moments when there is no air and you drown in the sorrow. 

Eventually the drowning became a wallow
and the wallow became a silence
and the tears came quietly in uninterrupted rivulets along my cheeks.

Then I thought:  why have I gone into this ridiculous state when I knew all along this was our goal, when we’d planned for months to do this thing, to tour the residential schools, to place him in a good one, to give him the best chance at living and learning and getting better?

And now what?  Are there instructions for giving up guardianship of your nine year old non-verbal precious little boo, and living an hour and a half away from him? 

Is there a solid path to follow, a rock to hold so you don’t float away on the waves of incredulity, a way that doesn’t hurt like fire?

Am I going to make it through the next 6 weeks?  Am I going to make it at all?  I have cried buckets, rivers, oceans of melodramatic tears.  My weakness sickens me. 

And there is a lot I am leaving unsaid.  It is better that way; I want to forget so many things. 

All I want to do is sleep.

“I don’t even try, I know I have seen the best I’ll have
I don’t even try;
I will just play dumb
I won’t hear a single word that’s said
I will bite my tongue
Never sing another song again”

~ Guster, Rainy Day

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boston children’s hospital

Posted in autism, behavior, doctor, Uncategorized, tagged , , , , , on July 3, 2011| 3 Comments »

Andy and I Jonah and I left Albany at 6am last Tuesday to bring Jonah to Boston Children’s Hospital for a 9am appointment with a pediatric rheumatologist (because even though we live in the pretty little capital city of New York State, there are zero pediatric rheumatologists here).   Jonah has been limping and was clinically diagnosed with pediatric juvenile arthritis based on other health problems like synovitis in his hip and jaw, and iritis/uveitis in his left eye.

In February of 2010 little boo had an operation on that eye to replace the lens, and they implanted something called Retisert to constantly dispense small doses of steroids locally.  When we got him home and the anesthesia wore off completely, I took a picture of him in his misery.  I guess I wanted to record it while desperate to alleviate it.

I hate this picture.

This was the only time in his little life that he verbally expressed pain to us:  eye hurt, he cried – just once – as if agony could forcibly pull language out of him.

We gave him medicine and I rocked him in my arms, wishing I could fix everything.  Turns out we can’t fix his arthritis either – but it’s mild, they told us, and naproxen should be able to help him with his limping and any associated pain.  They told us neither his eye nor his arthritis would cause his aggressions.  Nobody can tell us what causes the violence exploding like mines inside him, timed to a schedule so erratic it has no business being associated with time at all.

The three hour trip to Boston was okay – we’d given him sedatives the doc had prescribed – and we managed to get him in and out of the short appointment without any major aggressions.  It is undoubtedly an amazing hospital, even aesthetically, complete with musical steps, bubbling walls, and God knows what else we didn’t see because we were in and out of there so quickly.  On the ride home we had to pull over three or four times because Jonah went bezerk.  Andy ended up in the backseat with him, holding him, getting his own arms scratched to hell.  There was virtually no conversation there or back.  We were collectively frazzled – got back into town around 3.

After I dropped Andy and Jonah at the house I went home to my apartment where sweet Jack Ingalls was waiting,

and I lay across the bed, trying to make myself think of nothing.

“The things that I’ve loved; the things that I’ve lost
The things I’ve held sacred that I’ve dropped
I won’t lie no more, you can bet
I don’t want to learn what I’ll need to forget…”

~ Audioslave again, “Doesn’t Remind Me”

I can’t write anything else right now.

I’ll come back.

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i like

Posted in Uncategorized on June 29, 2011| Leave a Comment »

“I walk the streets of Japan till I get lost
Cause it doesn’t remind me of anything

With a graveyard tan carrying a cross
Cause it doesn’t remind me of anything

I like studying faces in a parking lot
Cause it doesn’t remind me of anything

I like driving backwards in the fog
Cause it doesn’t remind me of anything…”

Doesn’t Remind Me by Audioslave

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