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Archive for January, 2014

My mom came to pick me up yesterday morning, just like every Saturday.

(We switch cars every week but she likes to drive either way because, she says, my driving makes her nervous.  I’ll not waste time defending my driving skills; suffice it to say I feel the same way about her driving.  I capitulate and let her drive because we argue enough as it is…it’s just one less thing).

The visit with Jonah was cute and fun, punctuated by a medium meltdown in the car, the kind where he squishes himself way down in the car harness and kicks Andy over and over with his strong, long legs, necessitating pulling the car over immediately. 

Take our coffees out of the car, Andy says, and get out.  I know he is protecting all of us, especially me, from injury.  This is now routine procedure.

I get out of the car and it is very cold and snowing – the kind of snow where it all clusters together, forming planets of snowflakes, drifting through a universe of cold.  Andy is now in the backseat with Jonah, calming him, still telling me to keep my distance.  And so I step back .

My eyes fill just a bit with tears this day, and I lift my head to the sky to stop them.  Through a blur I see the planets of snowflakes, layer upon layer upon layer falling ad infinitum, and for a moment I stay on Planet Snow with whole frozen moons landing on my face and eyelashes because I don’t want to hear or see Jonah crying, squirming, pleading all done?  all done? when in actuality he is not all done at all, not usually, not hardly ever.

He hits or kicks right after declaring he’s all done.  It takes a while to get to the real all done.

But I digress.  And dramatize.

It was a small incident, comparatively, and we returned to the apartment, listening to Cranberry Guster kinda loud (at Jonah’s demand) all the way back.

Just before we arrived at the apartment Jonah asked for Thomas? which is a rare request, but one not unexpected, seeing as how Thomas and all his friends are pieces of train.

What does one train say?  Jonah asks his dad.  Choo Choo!  Andy answers.
What do two trains say?  He asks again.  Choo Choo!  Choo Choo!  Andy says.

Jonah’s loves this.  Two trains say choo choo twice.  That’s right, Boo.

A few days ago someone on twitter asked me if I would participate in a survey-study of parents of kids with autism.  The survey questioned:  When your autistic child graduates high school, what are your expectations for his or her future?

Jonah is (nearly) twelve, and two trains says choo choo, choo choo.  Does that answer your question?

They are working with him in school now using an iPad.  It’s only been a few days but it’ll be interesting to hear how he’s doing on it.  I wouldn’t be surprised if he can read a little, even with just his right eye.

The autism spotlight always seems to shine on high-functioning kids (or kids with Aspergers), almost as though there were no other manifestation of autism….or as if any other kind were something unpleasant to think of – and eventually, maybe, something to be identified in the womb, so women can choose not to carry a baby like Boo to term – just as 50% or more of women carrying a child with Down’s Syndrome choose to terminate today. (I got that percentage from a few different articles, none of which said the figure was less than 50%).

These are just things I’ve been thinking about lately.  Me and my happy musings.  I can’t and won’t judge.

Zoom back to the apartment, at Jonah’s delight upon greeting Thomas – at distributing the items in my mother’s cooler to the cabinets and fridge, very neatly – at sitting at the table to eat and asking for what he wants, at throwing away his garbage when he’s all done.

Of course he also will take my full drink and, in his little business-like way, march over to place it on the refrigerator shelf, returning to collect grandma’s full drink as well.  And he will run shrieking and dripping from the tub to turn the volume up while Cake plays Meanwhile Rick James.  Then, laughing, he’ll run into Andy’s room, jumping around, screeching with happiness on the big blue bed until we can catch him with a towel and hand him his clothes to get dressed.

The we dance, Jonah and I, to Guster’s What You Wish For and we jump around giggling and turning in circles, my hands and his clutched and moving together, swinging our arms to the rhythm.  It’s worth everything to me to see him like this.  Collapsing, I clutch him to me and shower his face and hair with mama kisses.

My mother worried about the snow, so we left a little early.  No sooner had we gone through the tollbooth to get on the thruway (but not close enough to actually get on the thruway), her Taurus loses not its rev but any forward or backward motion.  This is where I could make this blog post very very long, but I won’t bore you with all the details.

Suffice it so say her car is now at a transmission service garage in Kingston, and M came down from Albany to pick my mom and I up and drive us home.  I just kept thinking thank God Jonah wasn’t with us.

The only other remarkable note is that M and I are becoming Healthy People, the kind who exercise (he even goes to the gym nearly every day now) and eat things like vegetables and fruit and beans and nuts and just a little free range chicken.   I even ran into my favorite doctor at Trader Joe’s.  We’ll see how long it all lasts, but at least we are doing it now.  I mostly jog in front of the TV or run up and down the stairs to the basement, and do my hand weights.  But I already feel the endorphins and the tightening in my core.  Comes a time you can’t depend on Youth anymore to forgive your bad habits.

And at least we got to see Jonah before my mom’s transition blew.

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After being separated for a little more than two years, I received final divorce papers in the mail on Saturday, complete with Judge McN’s signature dated Christmas Eve, 2013.   I have a thing with dates and would have preferred one less easy to remember… less, well, holy.  The joke’s on me, I suppose.  Oh well.  For the judge it’s just a piece of paper he has to sign.

I’m lucky that Andy and I get along and are friends, because it makes everything a whole lot easier.  As if underscoring the unimportance of our official split to him personally, Jonah ran around for a while yelling mamadaddy!  mamadaddy!  That’s right, Boo.  Mama and daddy love you so much, no matter what.

Andy called me earlier today;  school’s closed for MLK Jr. Day and so he’d picked Jonah up for a visit.   He told me Jonah wanted to talk to mama on the phone.  This is kind of a new thing because he was never much interested in the phone.  Even with his new willingness to hold the magic plastic piece while speaking and listening to invisible mama, I have to do most of the work.

Hi Boo!  (silence.)  Are you watching Oompa Oompa yes.  Can you say “I love you mama?” I love you mama.  I love you too Boo, mama loves you so much.  Be good for daddy, okay?  okay Bye bye sweetheart.  bye bye.

It’s the closest thing we get to conversation, but light-years beyond how it was years ago.  It’s part of why I keep this blog — so I can look back and measure progress, both his and my own.  Andy also said Jonah was being exceptionally good today, and I’ll talk to him later to see how long it lasted.

On Saturday I wanted to take a couple new pictures of Boo, but when I ask him to smile, he turns all silly and gives me a hammy, angelic grin:

I changed it a little in my photo editor to make it look even creepier.  :-)

I changed it a little in my photo editor to make it look creepy, for fun

I think it’s much cuter when he doesn’t know you’re taking the photo, like here at his improvised bathtub/swim-up bar:

OLYMPUS DIGITAL CAMERA

Most of what happens regularly every weekend happened again.  The endless requests for grandma’s house? and, of course & most especially, car ride?

It’s a 90 minute car ride each way to him, and then I take two car rides with him, Andy drives, my mom stays back at the apartment and either struggles with the Internet (I am trying to be more patient as I teach her the simplest moves of the mouse) or watches QVC or FOX until we return.  Always on our car ride, Jonah wants music and he wants it loud.

We know this not because he tells us turn it up, but because while the music is already playing he will say music on!?  over and over until it is at his desired level, which means that for Andy and I to have a conversation, we have to raise our voices.  We don’t want to hurt Jonah’s hearing of course,  so at about the halfway point we tell him “this is as loud as it goes” as if he understands what we are saying.  Maybe he does, but still he asks for “music on?”

This is what it is now, our strange little family, usually interrupted by Jonah’s dissolving into tears and sometimes an aggression or two.  Practice radical acceptance, they taught me in the hospitalDBT:  Dialectical Behavioral Therapy (DBT) combines cognitive and behavioral therapy, incorporating methodologies from various practices including Eastern mindfulness techniques.

It would serve me well to read through the notebook I kept there.  Eight days of wisdom-teaching does not a wise woman make.

But I’m facing forward, moving slow…forging ahead…

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How’s it going to be
When there’s no one there to talk to
Between you and me?

~ Third Eye Blind

I haven’t been writing much, except for work.  I am a hermit in my house like a winter bear.  It feels cozy-nice.  Plus I do truly good things for my job, and from home where it is easy to hermitize. However, I realize I need to move my limbs and go out and be somewhat social.  Yesterday I went for a mile walk, which is only 20% of what my pedometer app recommends.  But I figure a mile in my own moccasins is better than no miles on the couch.

I shall emerge groundhog-esque tomorrow for a doctor appointment, to have breakfast with my dad, and to visit my Uncle J in the hospital.  Saturday there is always Boo, which forces me out and away from home to see my sweet son.  Last week I played him Meanwhile, Rick James (Jonah calls it “the clapping song” and can do all that clapping in time) — Boo and I danced all around the living room, of course mostly in circles, singing and laughing…I hadn’t played it for him in years but something clicked in his head, and he remembered and requested it.  He requests teachers and babysitters from years ago, too.

He remembers things, my Boo.

He is also clever, and has a fantastic invented communication system to navigate the maze around which his verbal skills cannot puzzle out just yet.  Let’s say he wants a car ride, but he also wants to make sure that it’s not the car ride back to his residence.  What he will say to communicate this is “Wanna take a bath?” which makes no sense to anyone but Andy, me, and my mother.  What he is really saying is can we go for a car ride now and then come back here again after that so I can take a bath or at least not have to go back to the residence just yet?

Andy decoded all this.  I take no credit.

Not an hour after the happy dancing clapping song,  Jonah is screaming in Andy’s bedroom on the Big Blue Bed because he’d hit Andy and is trying his damnedest to attack him.  Hard.  I stay close, ready to help, watching as Jonah’s kicks hit Andy’s kidneys, his face, his torso, wanting to jump in and help but Andy told me not to, he always tells me not to, my mother in the kitchen nervous nervous nervous all the happy dancing energy lost in this new development.

And then it is over, and Boo is requesting Cranberry Guster? (What he calls their Easy Wonderful CD) because I am trying to re-expand his musical choices beyond Prince (sorry, Andy).  Boo remembers the Guster days of course and loved when we put it on.  My mother would like him to listen to The Sound of Music but I’ll settle for Cake or Guster or even Snoop Dog (or it is Wolf now)?  Less Lady Gaga and more They Might Be Giants.  I just want him to listen to and love lots of different music.

These days I feel so much like half a mother, and it’s too hard to explain to people who try to reassure me I am of course a whole mother and blah blah blah.   Facebook doesn’t help.  Everyone has stories, accomplishments, outings to share.  There’s too much silence in my house.  I turn on TV just to hear the noise (instead of embracing the silence as I should) and I feel bad for those who live alone.  I have two pets with me during the day and a partner at night but I do not have my child and I know now he will likely never live with me again.

For a while I think I assumed his placement would be temporary, that he would get better like in a hospital and then come home.  No.  That’s not right.  I don’t think I assumed anything, actually.  I was in a place of desperation and there was no extra time for anything but panic and aggression, emergency and breakdown.

I spoke with his case worker at school and deteriorated into tears.  I am Queen of the Endless Questions.  My prayers are please and thank you.  And it’s so hard for me to talk about Jonah.  Thank God I write.

Has this post deteriorated into rambling?  Ramble on

I do want to communicate with someone who also has placed an only child in residential care.   I can talk to Andy but we almost never talk about that.  I feel like such a tiny demographic.

“I am an island…..”     ~ Paul Simon

No, that won’t work.  In that song an island never cries.

Here’s a picture or two instead of a stereotypical quote:

nothing beats a little daddy love

nothing beats a little daddy love

Jonah invented a new suck-your-thumb-while-giving-a-gang-signal, supercool move

Jonah invented a new suck-your-thumb-while-giving-a-gang-signal

Love you, sweetheart.

Mama see you soon.

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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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