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Posts Tagged ‘The Anderson School for autism’

So I allowed myself a break from telling the story of Jonah and our ups and downs…the roller coaster twisting racing in turns of joy and aggression, stopping at the station for deep breaths of still, of peace, but the safety bar won’t raise – it never lets us out – and then after a day a week a month the announcement to keep hands and feet inside the vehicle, and we’re off again and climbing that hill from which comes the fall the fright the feelings, stop the ride I want to get off please.

It’s the same shit I always spout and am tired of spouting.  How about this year I turn my metaphor around, into a river…not round and round but journeying somewhere, rocks and rapids notwithstanding?  Not so much dizziness but the radical acceptance of a fluid situation.  Change not as an event but as a constancy.  Journeying not with a destination but as the destination.

Yeah, like I’m gonna turn all Zen.  Well I can give it a shot, anyway.

First the third wake:  my friend K’s father passed away from the lung cancer that killed him on Friday the 13th of December.  Her bravery and strength, the way she carries this burden like a strong woman of faith with a will of iron and a heart of truth and beauty…she is the only child, like me.  Now she slams the door shut on 2013 and perhaps is still in shock that her father will not be there in this new year.  How strange is grief, and the different ways it works its necessary, surgical-like job inside each one of us when we mourn.  I have tried to be a good friend but still feel helpless.  Through it all she managed to make batches of Christmas cookies and gift them to me along with a Willie Wonka shirt for Jonah with Oompa Loompas on it.  I am proud to call her one of my closest friends.

My real-life-friends have whittled down to a few, but they are gems who have stuck with me no matter what – without judgement or competitive bullshit or cattiness.  That feels right.   In 2013 I have given and forgiven; I have risen to the occasion and I have fallen apart.  I’ve slipped and stayed lying on the ground for a while.  I’ve crawled and danced and risked everything and lost my shit it felt so good to smash that glass all for a better way to get through this life, for better things to do, for more important goals, more impactful work.   I’ve soared higher than ever on the warmest winds of change and beauty.  I’ve cried my eyes out both in sorrow and laughter.  I’ve lived. 

During the month of December I also allowed myself to feel the angry, awful pull in my heart every time I saw kids waiting for Santa, counting days, getting excited, dressed for photos, new babies joining bigger siblings by the fireside as mom bakes cookies, the whole Christmas scene and winter family fun I envy.

Then I take the time to realize half of what we see is illusion anyway, and the other half probably would envy my ability to give my boy bubbles, tangle toys, and a Willie Wonka & The Chocolate Factory DVD for Christmas while they are faced with kids who want iPads and gaming systems – the right sneakers and the cool outfits, hundreds and maybe thousands of dollars of presents.  Of course this is all conjecture and generalization, but you get the idea.

There are no right outfits for Jonah, unless you count the fact that comfort is king.  In fact, Andy drove Jonah up to my mother and me on Christmas in jammie bottoms and an unmatched shirt, because that’s what Boo wanted to wear.

Jonah Boo, playing on my mom's floor with a flashing turnabout radio-controlled car

Jonah Boo, playing for a few minutes on my mom’s floor with a flashing turnabout radio-controlled car

My mother had cooked a ham & pre-prepared it all into containers for us and, just like Thanksgiving, we spent Christmas on car ride seeking a train that once again refused to come because it was a holiday.

I caught the little bugger for a Christmas pic with mama

I caught the little bugger for a Christmas pic with his mama

My mama and me

And one of MY mama and me

When Jonah loves a particular scene in a movie or show, he'll run up to the TV with a happy screech

When Jonah loves a scene on TV or in a movie he will run to the screen with a happy screech.  Here’s another example, taken a few days later:

Still Willie Wonka on the screen

Still Willie Wonka on the screen

And the coolest pic of all, methinks, because Jonah is watching on one side and a kid IN the movie is watching on another:

I love this pic

Here comes the falling somersault

So I may not have a lot of details to share, some because I chose to forget and some because I am too lazy to type out a month’s worth of details….but there are many moments of Jonah being his repititious-yet-never-boring self.

I have to give a shout-out to Jonah’s dad, Andy, who as usual has come through in his amazing father way.  Since he lives so close to Jonah he sees him more than I do — but that doesn’t mean he has to pick him up for visits as much as he does, or withstand the aggressions, the emotional strain, and the exhaustion which nearly almost follows a visit — he has picked Jonah up for a visit whenever he can, whenever he is not working.  Always he is patient and takes Jonah on all the car rides our boy so loves, playing Prince CDs for Jonah (which is kind of like me playing Guster CDs for him, because Andy loves Prince like I love Guster).

Always he is a wonderful father.  The best parent with the strongest constitution and all the love in the world for his precious son, his only child.

Here is Jonah crying because we forgot to bring his favorite Prince CD on the car ride.  Luckily we were not far away and were able to return to the apartment to retrieve the longed-for CD.

"Diamonds and Pearls?!"

“Diamonds and Pearls?!”

This is not a boy with autism having an aggression.  This is a kid who wants his Prince and ain’t afraid to cry about it.

Oh the humanity

Oh the humanity

Poor Boo.  The aggressions I thought might be gone for good have returned.  I have no idea how many times the pendulum has to swing before I get it through my head:  pendulums swing – it’s what they do.  Perhaps I can incorporate this into my head as well this year. Or, better yet, find a way to blow up the pendulum.  Smash it all to hell.

I’m gonna learn play my new acoustic guitar (thank you Richie, who came to visit from Japan, for teaching me the 1-4-5 progression, which means I can play about 10,000 songs very poorly so far)…and maybe try a song or two for Jonah…

yes I asked for this specific one because I am a DUMMY with an acoustic guitar

Yes I asked for this specific one because I am a DUMMY with an acoustic guitar

So here is a 2013 pictorial to usher in what I pray will be a better year – for everyone!

The Year of The Eye: January 2013

The Year of The Eye:
January 2013

March:  more eye doctor

March: more eye doctor

April:  thumb-sucking contemplative Boo

April: thumb-sucking contemplative Boo

May:  waking up from the eye operation to try & save the sight in his left eye

May: waking up from the eye operation to try & save the sight in his left eye

June: The endless wearing of the eye shield

June: The endless wearing of the eye shield

July:  a smile through the eye shield

July: a smile through the eye shield

More daddy-love in August

More daddy-love in August

No more eye shield.  The operation didn't save his sight.  Thank God for Boo's healthy right eye!

September:  Happy Boo, rocking back and forth to a tune in the car. The operation didn’t save his left eye’s sight, though. Thank God for Boo’s healthy right eye!

October:  visit to the juvenile arthritis doc - everything looks great!

October: visit to the juvenile arthritis doc – everything looks great!

November:  Boo asks if the nonexistent "Thanksgiving train" is coming, and points to where he thinks it'll come from.

November: Boo asks if the nonexistent “Thanksgiving train” is coming & points to where he thinks it’ll come from.  He looks hopeful.  Sorry Boo!

Rockin' his Almanzo Wilder Homestead shirt & eating some chips and dip...

December: Rockin’ his Almanzo Wilder Homestead shirt & eating some chips and dip…

Boo’s ready for 2014.  We’re three days in already and “Snowstorm Hercules” (I guess they’re naming all the snowstorms now) has dropped maybe 7 or 8 inches here in Albany.  Hercules my ass.  They should have named it Deep Freeze — it’s about negative 4 outside and even opening a curtain feels like I’m subjecting myself to snow-blindness from all the white-bright.

P.S.  My biological family does not want anything to do with me.  Surprise surprise.  It was a bee sting, really – for a short while it hurt, burned, stank of rejection and things not right or fair.  I cried.  Then I got up off my ass and put some calamine lotion on the whole mess and flicked the bee off my arm.  That bee died stinging me, just as this biological-relative bullshit is dead to me now.  I am blood-related to Boo, and that’s all I need.  That, and the family I already have and love – including those outside my adoptive family whom I have chosen to adopt as sisters or brothers or cousins, DNA be damned.

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Sometimes hope is the feeling that the feeling you have isn’t permanent.”  ~ Jean Kerr

Tuesday was a series of weird, strange, amazing events, most of which occurred after we’d left Jonah behind at the school.  And everything has been surreal since.

Jonah Russell “Boo” Krebs was admitted into the Anderson Center for Autism 34 years to the day after Elvis Presley died.  There’s a reason I noted the Elvis connection but I don’t want you to think I’m creating associations where they don’t exist, so I’ll let that fact just sit there for now.

It was harder on me emotionally the day before, Monday.  Andy and I had sorted through all his clothes, and I’d gone back to my apartment for the day, and my awesome friend Richie called.  Richie lives in Japan and I get to see him maybe once every 3 or 4 years and talk to him twice a year or so.  Incredibly, he was calling from New York City, and when I told him we were taking Jonah to Anderson the next day, immediately he offered his help – with whatever we needed.

I thought only a few seconds before I asked him:  Can you drive me back to Albany from Anderson once we’re all done?   He assured me that would be fine, even though I predicted I’d be a basket case.  He’s one of the few people in the world I’d want to drive me to Albany after having placed my son in a residence school, and he materializes exactly on the day I need him.

Amazing.

Armed with the knowledge that my dear friend would be there to get me, we set out – Andy dressed nicely to job/apartment hunt (He will be living near enough to Jonah to visit him a lot, something I am both grateful for and happy about).

During the car ride to Anderson, I’m pretty sure Jonah picked up on our whole vibe; the strong visual clue of a pile of bags and bins in the car probably confirmed his theory:  something’s up.

“Home?”  he asked, growing concerned.  A tear escaped my eye, and then another and another; clenching my jaw, I set my bones into cement-hard tightness, held my breath, and sat in silence.  The second time he asked I think Andy might have said “later, buddy.”  It probably took all he had to say it.  These were the worst moments – the height and weight and breadth of everything we’d dreaded.  No more going home for Jonah.

Upon arrival things moved swiftly.  We all met in a conference room – me, Jonah, Andy, one of the nurses, the admissions specialist, & Jonah’s caseworker, teacher, and behavior specialist.  A nurse sitting next to me reviewed Jonah’s meds and gave me a big, encouraging hug.  Everything was surreal, happening impossibly fast.  They took their time in explaining details, but I only half-listened as my heart pounded, pounded, pounded.  Thank God it’s all written down, the numbers and information we need.

It was explained to us that Jonah would go with the teacher and behavioral specialist to the classroom, and we would continue on to his house to set up his room, ask any questions, and then leave.  Everyone left the room so we three could say our goodbyes.  I knelt down to Jonah first and inhaled deep, right at the top of his little head, memorizing his scent.  I hugged and kissed him, whispered mama loves you, and watched as Andy said goodbye as well.  Almost before we or he knew what had happened, he was disappearing down a hall, one little hand in each of the two teachers.  I’d fabric painted Jonah a shirt the day before that said “Hi! My name is Jonah!” – you can see it if you look at the last blog post, which was taken Tuesday morning just before we’d left.

The last glimpse of my boo’s shirt was the most difficult thing to see; the impulse to run after him was the most difficult thing to fight.

We didn’t cry.  My jaw was tight and my eyes fixed, shoulders stiffened anxiety-high.  Andy is harder to read but I think he handled it as best he could, too.

We were escorted down to Jonah’s residence to unpack all of this things.  In silence we worked to fill his drawers and set up his towels, his bed, a small wall hanging, his little photo albums I’d made for him, and the few toys I’d brought along.  When we were done, Andy dropped me off near the entrance of Anderson (after assuring me that he’d be in town for a few hours if I needed help or a ride) and I sat on a little bench to wait for Richie.

There was a very small hill to climb to get to the bench, and I noticed a sign:

It turns out my bench was a part of this whole “sensory garden” that different kids had made over the years – benches with hand prints…a trestle-threshold to walk through, mosaic tiles pressed into the ground…a statue girl of stone, perpetually watering her garden.

Here’s where Elvis comes back into the story.  I’ve spoken of my best friend Gina in this blog, who I lost to suicide in October of 2002.  Well she and I loved hawks, and every time I see one, I think of her.  Hawks often appear when I need her, to give me a smile or some hope.  Plus, she was born on Elvis’ birthday – exactly 34 years after Elvis.  So I’m bringing Jonah exactly 34 years after his death, and she was born exactly 34 years after his birth, and I don’t know what it all means but there isn’t a hawk in sight and still it feels very coincidental – not sure about the number 34, but Gina never made it past 33, so there’s that…I’m beginning to lose it a little, thinking, and I stare off into space, seeking a void so I don’t have to feel anything.

I was very still on the bench. Breathing.  Breathing.  Breathing.   If I live to be 100 I will never forget the weather that day- the feeling in my middle – and everything that happened next.

Behind the sensory garden was an open field with woods.  The cicadas were August-loud.  Rain came and went in teeny sputters swept on breezes; it was muggy, then cooler.  Here I have to pause again to tell you Richie and I had a very good friend, my second-best-friend-after-Gina best friend, who died last year.  She too was young, only 38 or so – my Sanx-sister, J.  We’d gone to college together, Richie and Sanx and I, and had managed to reunite at Sanx’s parents house every few years whenever we could until she died in the spring of 2010.

Back in our college days Sanx and I adored deer, which were aplenty on our country college campus.  To get close to them we often went so far as to lie near-flat in the pre-dawn dewy grass, still as the statue girl of stone – just to watch the beautiful lithe creatures emerge from their forest paths, often with fawn, silently eat the grass and step about like gentle, graceful spirits.  When I see deer, I think of Sanx the same way hawks bring Gina to mind when I see them.

So here I am on the bench, all still, zoned out and waiting for Richie, and I hear what sounds like a cross between a goose honk and a dog bark, right over my left shoulder.  Were I a more mindful or meditative person I might’ve been able to turn my head ever-so-slowly, or even remain still, but I’m neither mindful nor meditative enough, and so I turned quickly and scared away a deer that had been sneaking up on me from out of the forest and across the field.  She bounded, flashes of her white tail all I could really see until she stopped at the edge of the forest.  We regarded one another, she and I, now 50 yards or so away from one another:

But she’d been almost right behind me.

Immediately after taking the picture, I got a strange shiver, something telling me to look up, and, circling directly over my head, was a red-tailed hawk, sailing, a sudden shaft of sun brightening its wings.  My Gina.  And my Sanx.  And then, just as suddenly, round the corner in his little rented Ford, comes Richie, arriving to hug me tight in his arms and take me home.

There is more of course, but from my perspective it was a day of miracles.

I called Anderson twice that day, two the next, and then again today.  He’s acclimated quickly and did very well on Tuesday, playing and eating okay, helping set the table and clean up the garbage, going to the playground and in the pool.  Then he pushed the envelope a little more on Wednesday.

But I just called his teacher today, and she said he had 20-25 aggressions today.  It seems like they’re getting a taste of the real Jonah, and I’m grateful they’re handling him okay.  His teacher was kind enough to e-mail me after we’d spoken:

Hi Amy,

I just wanted to e-mail you after our conversation today because I sensed your worry and I wanted to put your mind at ease. The whole team has a lot of hope for Jonah…we’ve seen many children with similar behaviors and we wouldn’t work at Anderson if we didn’t want to help them! I know it’s only the third day but  think he’s going to be very successful here…it’s just a matter of finding what works for him! I hope you have a great day! 
Best,
S

What great communicators.  I am grateful that they really care, and show it.

Nearly everything I’ve said is from my own little micro-perspective, where there is an all-around foundation of strange.

My car even turned to 77777:

and when I went to the mall yesterday to do a little retail therapy, I happened to walk into a store I rarely visit because they’re pricey – but I noticed they had $10 t-shirts so I looked at them.  One faded v-neck purple one said, in barely-readable letters against a pattern of black wing-and-orchid shapes:

there was a rainstorm
that while we walked through
woke every flower
in the field.
that day the echo of
warm rain and the
melancholy breeze
became our
favorite
song.

Of course I bought it.

Now my days are free, and weird.  I’m still only half-awake, only half-aware that this has happened.  I believe Jonah will do well at his new school.  I listen to the signs, silly as they may seem, because to me they spell and shout HOPE, and I am embracing that hope and turning my sweet boo over to Mother Mary’s warm embrace, to sit on Jesus’ knee.  I’m letting go and letting God, to paraphrase it in a Christian context.  I’m bowing to the divine inside his caregivers and teachers.   I’m trusting, trusting, trusting.

Here’s a picture they sent me.  He looks so happy!

I love you, boo!

Thank you thank you thank you.  That is my prayer.  Thank you.

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Today’s the day the Anderson Center for Autism is coming to Wildwood to evaluate and observe Jonah.  In a few days or so we should know (a) whether they’ll take him and (b) when they’ll take him.  Then, maybe, we’ll have three residential schools from which to choose. 

Today is also “fun day” at Wildwood, but Andy has to pick him up as soon as the Anderson people leave because Jonah’s not allowed to participate in the fun day activites; he’s too violent.

While I understand their decision, it upsets me that my little boo can’t enjoy whatever the other kids get to participate in…plus it makes Andy’s unpredictable day with Jonah that much longer.  The irony is that Jonah had a very good day yesterday at school, with barely an aggression to speak of.

No fun day for you!

The blessing is that Jonah likely won’t care.  A car ride, a bath, grandma, and some peanut butter roll will, perhaps, suit him just fine.  I hope.

But it makes me sad all the same.

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Springbrook called the day after we toured The Anderson Center for Autism and told me they were going to accept Jonah, in one of their brand new residences, most likely in November.  We took the placement; you can’t just stay on all the lists until the first placement comes up, so I had to call Tradewinds and The Anderson School and tell them to take Jonah off their lists.

Now it’s real, and I am a wreck.  I have researched and taken notes and gone into a state of mind where it is all objective – it was simply a project – albeit a difficult project – on which to work very hard.

Now the project is over and I am back in the subjective and it is real.

It is real and I have a countdown; it feels like the doomsday clock is ticking and I feel very very dangerously, frighteningly, frustratingly, ridiculously close to the day I admitted myself into Four Winds.

Somehow I have been shocked back into reality, where all this is really happening.  I really did fuck up my marriage and I really will give my son away soon and I really do feel like I do not belong in this world.

I have taken extra meds and I’ve got to be able to keep my shit together and get a lot done today.  I am thankful it is Friday so I can crawl home and cry when this day is over.  Jonah had 8 hard-core aggressions at school yesterday; it is not a matter of whether we are doing the right thing but rather how to actually do it.  My father has not seen Jonah since the day before Thanksgiving and it is because he is afraid of his grandson.

And now, suddenly, I have this near-constant tinny ringing in my ears and vertigo.  When I reach for something I miss it by an inch.  When I try to pour something I spill it.  I am spelling all my words wrong and have to go back and edit this over and over.  

I have a strange sense of not even being in my body. 

“We’ve colored in the lines and followed all the signs;
Fought a war till the war was over…
Said you’d never be the kind with an ordinary life –
Now this how it feels to have a broken heart

Look at the mess we made
Now we stopped and we say what we always say
And then you make the great escape

With every year you’ll come to regret it…

~Guster

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