Archive for July, 2013

Well I got a grip, just as I promised, and continue to face forward, move slow, forge ahead.  Those are lines from the song The Captain by the band Guster, who, incidentally, played at Tanglewood on the 23rd.  I didn’t attend, even though it was Brian-the-drummer’s birthday.  I would have loved to have gone, but it’s not like I haven’t seen them 19 or 20 times;  I can live through one season without seeing a Guster show.  I guess.  

I’m mostly learning how to live my new life.  Working from home is wonderful and surreal all at once.  I never know what day it is until it’s go-see-Boo-Saturday — and I eat, garden, read, clean, go the market, etc. at weird times.  

With Jonah I fight stagnation, against a dull acceptance of what feels like a fight I can’t win.  Andy gets the majority of Jonah’s affections, but also the majority of everything else – embarrassments, messes, attacks.   My mother laments that Jonah “just isn’t interested in anything,” though she doggedly drives down with me every Saturday to face the mysterious nature of Boo.  I did not mean to sadden my parents this way.  They have no other chance at a grandchild — and they were both so excited when I announced my pregnancy on Flag Day 2001.  It is true what they say — the best way to make God laugh is to announce your plans.

But I see glimpses of wonderful things in Jonah which I believe could grow, and be nurtured.  His sense of humor.  The funny vernacular, all his own.  He is interested in things.  I know he is.  I’m grateful his school provides activities and “field trips.”  With us he mostly just wants the car ride, and, as soon as we turn on the car, music…

For those of you who don’t speak Jonah, he is saying “want music on?”

Yes, he still requests “bath” and still he loves the lunches my mother brings down, and he seems to enjoy our presence, mostly, with smiles and whatever sense of comfort the weekly visits can give him, though it’s always a crap shoot, every time.  You gotta like gambling, or at least you gotta get used to it.  This past Saturday Boo was cute:

you can see the smile about to bloom on his face even without seeing his mouth

You can see the smile about to bloom on his face even without seeing his mouth.  his left eye looks a lot different to me than his right eye.  More doc appointments soon…

…but he was also all about daddyMore hugs, give bath, want kiss — all daddy.  No mama, bye bye mama.   Bye Bye Rainman. 

Like in the movie:

Raymond Babbitt: You were in the window. You waved to me, “Bye bye Rain Man”, “Bye bye.”

(Thanks K, for the reference, the giggles, and the better title for this post)

My mom was there but Jonah wasn’t interested in her much, either.  On days like this I remind myself the pendulum will swing and he will again love and hug and request grandma and me, but I can’t tell you it doesn’t sting when you’ve driven to visit your only child who wants nothing to do with you and actually, mama, if you could get even farther away from me, that would be grrrreat.

He had his ups and downs this week.  I think we were called three times during the week about when Jonah needed managements for aggression.  I know what the people who have to try and hold my Tazmanian devil are facing.  They’re getting physically hurt by my son, and Andy and I used to be them, and I want to thank them for saving me because I was really running on empty there for a while. When I allow myself to ponder it on any level but its surface, I am dizzy with disbelief. 

I disbelieve I have a son who is violent, even while I know he is.   I disbelieve how changed everything is for all of us from 3, 8, 12 years ago. Some of it is so ironic.  I followed the whole attachment parenting thing, for the most part, during Jonah’s babyhood.  Now I could not be much less attached physically, and we’ve only got that on-and-off attachment emotionally.

And then I think of his day school, three years ago, and how they were doing nothing BUT managing him.  All day. Every day.  I think of what living with Jonah’s aggressions did to me, and to his father.  And I realize it takes a long-sighted perspective to see where Boo stands in the grand scheme of things, and how it’s actually not all that bad.  He’s 11, and like any 11-year-old, his hormones are changing. He’s growing up.  Because he has autism and is just a little bit verbal (and not at all conversational), I tend to think of him more in terms of his cognitive ‘age,’ rather than his actual age.  Would you believe me if I told you it is difficult to remind myself he is 11?  It is.

I changed one child’s diapers for nine years.  It kept him a baby in a weird way, in the way I feel he will always be my “baby angel.”

Some days, this blog is more therapy than anything else for me, and this is one of those days.  I write about (and through) problems and perspectives as I consider, question, and allow myself to go numb, in turns.

More fun on Saturday: the rare occasion when Jonah sits nicely at the table to eat.  This is one of photography’s grand illusions:  to conjure a scene about which the perceiver then makes an untrue assumption.  The photograph does not lie, nor the photographer – but the snapshot of the moment can give a false impression, whether intended or not so at all (as in the pic below),

see how is leg is wrapped around his other leg?  that's his mama all the way.

See how his leg is wrapped around the other leg?  That’s his mama all the way.

The truth is Jonah is in near-constant movement.  A few seconds in one place.  Maybe a minute.  They say he sits for 15 or 20 minutes in school to do a project or activity).  Jonah prefers to get up, walk around, turn a circle or five, and return to home base. I sometimes turn with him, we twisting and whirling on the carpet like two strange birds.  

I’m looking forward to Saturday.  I will always have hope for my Boo, for the rest of his life, one day following the next beneath the sun and stars.

sweet boo

sweet boo

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Note:  This is kind of stream-of-consciousness – I am writing lazily and may or may not proofread or edit…

This morning, P, one of Jonah’s caregiver/bring-to-the-doctor folks, called me at 8:09am on my cell phone.  I was still lying in bed and answered sleepily.  Jonah had an 8am doc appointment today with his glaucoma doc and I’d forgotten to write it on my calendar.  There was no way I’d make it there, so I asked P to please call me after the appointment.

I want to emphasize my continuous daily gratitude at the mere fact that I can still be in bed at 8:09am on a weekday at all.  It’s a distressing mystery how (and how quickly) I furtively and quietly descend from undying gratitude to a place where I am taking everything for granted.  I’m doing pretty well at maintaining the self-awareness necessary to stay in appreciation mode, though.  So I am still here in Thankful Land; even though it may not sound like it, gratitude is still my foundation.

When P called me after the appointment, she told me they weren’t able to do anything there.  Jonah attacked her, J, the nurse, the doc…everyone but mama, the no-show.  My immediate reaction was guilt — he expected mama to be there.  I wasn’t there with octopus and fruit snacks and slinky and a drink.  I started to cry and I said “I’m so sorry” – everyone had gotten at least a good scratch or bite, I’m sure.  And I’m sorry because maybe if I was there he’d have been fine.  Three hours driving for nothing.  P told me it wasn’t my fault — and maybe it wasn’t — but my forgetting the appointment was my fault, and I don’t think I’ve ever done it before.  So they have to reschedule and drive back up tomorrow or the next day if possible, because the doc is going on vacation. 

Maybe it was divine intervention – I couldn’t handle seeing Jonah like that, so I was supposed to miss this appointment so I wouldn’t have to watch (or be injured by) Jonah’s out-of-the-blue attack modes.  It’s just one more thing to add to the list of everything I don’t know.  Good thing I am relatively comfortable with ignorance where it can’t be helped.

Is it normal for me to constantly want to attach Jonah’s behaviors to some shred of meaning?  I am not a ruminator but maybe I should be more of one.  Maybe if I tried harder to attach things, they would finally attach.  For some reason today I need to feel like someone understands, and the blessing is that (partially because of a core group of readers’ comments), I know people understand.

There should be a non-fiction, realistic, autism book out there to help us feel like we are not alone and to educate the world that there are plenty of us who are just making it day by day, as best we can.  I’ve read most of the well-known “autism family” non-fiction books, but they seem to offer not empathy but rather a superior attitude.  And 90% of them (or maybe even 100%) are written about children with very high-functioning autism (or kids who were low-functioning, but thanks to the Superparents’ dogged determination, have climbed their way out of the darkness of autism into the fucking light).  Evidently the rest of us can rest assured we have done everything wrong, made bad choices, and are selfishly lacking in the love-drive necessary to save our children like the people in the books.

Now I’m projecting.

I feel angry today. Can you tell?

Part of the reason I haven’t written in a while is personal, stuff that doesn’t belong here but has nonetheless messed with my head on one level or another…not all in a bad way.  I have found out where I stand in order of importance/significance/priority with a person or two, and that order was lower than I knew, and that hurts. But I do it to myself.  You teach people how to treat you, as Dr. Phil used to say back when he was still good.  I’ve taught a lot of people to treat me however they please.  Unless you have hurt me in an ongoing, vicious, or deliberately harmful way, everybody knows it’s a safe bet Amy will capitulate on the side of letting it go… or letting it be, right K?   It’s the path of least resistance.

The truth is, though, things like this usually dissipate quickly.  They exit my mind…and so they’re only really a problem if I allow them to be.

A joyful Sunday – went with my wonderful friend D and her husband to Tanglewood for the Boston Symphony Orchestra, which was fun and lovely.   The Royal Baby was born (I wanted Kate to have a girl, though).  I watched the last episode of The Sopranos last night (which, perhaps for the same reason I love Schubert’s Unfinished Symphony and Lois Lowry’s The Giver, I found appropriate, clever, and chilling).  Then all the news: George Zimmerman and Helen Thomas, and this star’s marriage and the latest viral video.  And the way I put off writing here when I feel dangerously upset or anxious, because I don’t want to come off like I’m having a pity party.  The phone calls each night between Andy and me.  Something I said to him on Saturday I wish I could take back because it laid me so bare I shivered in the heat. 

Inside me today lives an unrest that may last for a day but has the potential to go on and on unless I get a grip, which I undoubtedly will, given the fact that I’m not sitting at a desk in an office selling advertising and trying not to feel all this.

I will post some picture-stores of what’s been happening since last I wrote.

On Sunday the 15th I went to Delmar for brunch to hear my lovely friend Chrys play with the Jim Sande Ensemble (they were awesome)

On Sunday the 15th I went to Delmar for brunch to hear my lovely friend Chrys play with the Jim Sande Ensemble (they were awesome)

Jonah, last week at the same glaucoma doc he flipped out on today.  Here they are testing his left eye.  He can't see out of the eye and is about to give some bullshit answer.

Jonah, last week at the same glaucoma doc he flipped out on today. Here they are testing his left eye. He can’t see out of the eye and is about to give some bullshit answer.

Boo playing nicely with the slinky I'd brought him...sitting in the waiting room patiently for doctor number two, this time planned.  He was a good boy the whole time.

Boo playing nicely with the slinky I’d brought him…sitting in the waiting room patiently for doctor number two, this time planned that way. He was a very good boy the whole time.

Chillin' while he waits for doctor number two, who told us everything looks great and the cloudy blood cells are beginning to dissipate).

Chillin’ while he waits for doctor number two, who told us everything looks great and the cloudy blood cells are beginning to dissipate.  He got to leave without the eye shield, too!  He’s had it on for two whole months.  Poor kid.

This past Saturday:  Daddy helping Jonah put his shoes on -- and no more eye shield, finally!

This past Saturday: Daddy helping Jonah put his shoes on — and no more eye shield, finally!

Here’s a cute little video of us in the car:  me handing Jonah some lip balm and showing him how to press his lips together afterward.

Me, at Tanglewood Sunday afternoon, about to enjoy Tchaikovsky, Bach, and Tellmann (all contemporaries; Beethoven and Mozart came next)

Me, at Tanglewood Sunday afternoon, about to enjoy Tchaikovsky, Bach, and Tellmann (all contemporaries; Beethoven and Mozart came next)

When the music's over...

When the music’s over…

Lots of writing work today.  I can tune my TV to 1270 and go back to the music…

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On Tuesday morning, I set out with something like hope to meet Jonah and the two caregivers who’d driven him up for his glaucoma doctor appointment.  Jonah hadn’t seen one of the caregivers, J, in a long time.  J and Jonah have a special bond, and I’m sure Jonah was thrilled when he first saw him.  I love watching them together: a big brother and his little pal.

Jonah was so good while we waited in the hall.  He amused himself, turning circles, humming, making random noises, occasionally approaching J or P or me to touch us lightly or lean in for a hug.   Of course I’d come prepared with bubbles, octopus, peanut butter crackers, strawberry seltzer, and peppermint tic-tacs.  He was as quiet as an NT kid.  Probably quieter, for a few minutes anyway.

He even sat down nicely in the waiting room chair (for a few minutes)   :-)

He even sat down nicely in the waiting room chair for a while

…shortly thereafter deciding to chillax into “punk ass” pose:

I love the punk-ass pose...almost always accompanied by the thumb-suck, making it even funnier

I love the punk-ass pose…almost always accompanied by the thumb-suck, making it even funnier

Jonah was great for the eye test too, but the glaucoma doctor seemed to underestimate and overestimate my son’s cognitive abilities.  What I mean by that is:

Doc wants to assess Jonah’s left eye only so he covers the right eye and puts the Big-Ass-E up on the screen.  Boo probably can’t see a thing but he’s also no dummy.  He’s been to dozens of eye appointments, and he knows damn well the first letter they ask him to read is always E.  Sure enough, when the doc puts that giant E on the screen and asks Jonah what letter he sees, “E,” Jonah announces confidently.  I tell the doc that Jonah knows the first letter is always E.  So the doc shows him the second line:  A  L  O.

Not missing a beat, Jonah tells him “E F G.”  He has no idea, but has E F G is the standard answer he uses at such times.

The doc sighs and shuffles through some drawers; he finds a card with the letter E on it, and I wonder how this will help since we’ve already determined Jonah will answer “E” to just about anything asked of him.  Jonah watches as the doc holds the card up and then turns it to the right, so now it looks like a boxy M.

boxy m

“Jonah, which way is the E pointing?”   Jonah says nothing, so the doc’s next idea is to ask the same question using more difficult terminology.

“Jonah, which way are the E’s tines pointing – up, down, right, or left?’

E F G,” says Jonah.

“The tines,” the doc tries again.  He may ask well ask Jonah for the square root of 3,481*.

“I wish I had my alphabet cards,” I say.  This is a good glaucoma doctor, awards all over his wall, but he never seems to remember (or doesn’t understand) Boo — and by now he’s seen him in the office probably a dozen times.  Maybe it’s just that I’m too close to it all, and to Jonah — whose language, largely unspoken, I understand.

Finally, the doc holds up five fingers and asks Jonah how many.  When Jonah answers “two,” I think we all know there isn’t much sight in the left eye. 

The good news, though, is that the doc told us Jonah could have some of his sight restored after the blood cell clouding dissipates.  It just remains to be seen (no pun intended).  He was concerned, though, about a surprisingly low pressure read in the left eye.   He wanted Jonah to get an ultrasound at the other (retina) doc next door, right away.  He called to tell them we were coming — and we braced ourselves for the dire possibilities inherent in this plan.

But Jonah surprised us, happily amenable to “doctor number two.”

He actually sat patiently through two eye exams with two different doctors within 40 minutes of one another:

doctor number one

doctor number one
doctor number two

doctor number two

After the ultrasound, doctor number two said he liked what he saw of Jonah’s eye, and that his right eye looks just fine.

It was a wonderful day.  I suppose it’s a little strange that some of my best and happiest interactions with my son are at doctor appointments, but then both the good and bad can happen anywhere – so perhaps it isn’t strange at all.

Yesterday (in the ongoing heat and humidity that will surely mark this summer of 2013) my mom and I drove down to another wonderful day with Boo.

Good day, sir!

Good day, sir!

While Jonah took his beloved bath, we (meaning mostly me) recited his favorite scene near the tail-end of the 1971 film “Willy Wonka and the Chocolate Factory,” eliciting great smiles and giggling  from Boo.  GOOD DAY, SIR!   I love to hear him laugh.

There was only one incident during car ride to transfer station and I managed to capture it in photos from beginning to end.  No one was harmed during this incident, which was mighty nice.

Still relatively happy

Still relatively happy

We think he didn't like the volume of the song (probably not loud enough for his taste) or the commercial break, or his dislike of the song itself, though it remained a mystery why it made him so desperately upset and sad.

We think he didn’t like the volume of the song (probably not loud enough for his taste) or the commercial break, or his dislike of the song itself, though it remained a mystery why it made him so desperately upset and sad.

Andy's pulling over now.  Jonah is almost on the floor, kicking his legs up the front and beginning to cry.

Andy’s pulling over now. Jonah is almost on the floor, kicking his legs up into the front seat and beginning to cry.

After being bear-hugged and comforted by daddy, Jonah resumes his punk-ass pose.

After being bear-hugged and comforted by daddy, Jonah resumes a punk-ass pose.

This time when mom and I drove back to Albany it was with a light heart, and to my lovely musical selection: Guster Live Acoustic.

He has had a good many days in a row, sweet Boo.  And he gifted me with many hugs and kisses on Saturday, to last me ’til I see him next, on Wednesday, at the same two doctors in a row (this time planned that way).

I am grateful indeed.  Thanks especially to J and P, who as always were a huge help and support.

How I do love my amazing little boy.

* 59

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Andy told me Jonah has a new aversion – to strands of hair.  If a stray hair is on his shirt, he will pluck it off carefully, drop it (or hand it to you) and say “bye bye hair.”  I love these little utterances, how he weaves what language he possesses, making bridges to the concepts he wants to express.

It usually becomes quickly apparent to us what he’s trying to get across.  Sometimes I wonder if his whole aggression is frustration-based.  He’s probably much smarter than his limited language might lead one to believe.  So does this mean there is a short in one of the language-learning wires in his brain?  That he’d like to tell us that what he loves and what he would like to do is something which has never even been offered to him?  I have no idea, of course.

If Andy hadn’t informed me of this new Jonah tidbit, I have to admit I’d have been very confused when, on Saturday, Jonah handed me the drink I’d just poured him, announcing “bye bye hair.”   Even with the knowledge I now own regarding Jonah’s newfound antipathy, the scene left me confused.  Juice.  Hair.  No connection.

Helpless, I turned to Andy.  “There’s probably a hair on the cup,” he said, and sure enough there was.  Andy managed to slide the hair off where condensation had glued it to the side, and he handed the drink back to Boo.

I guess Jonah has been happy enough, swimming on the campus with surprising tolerance at having to wear a life vest (which prevents him from diving or swimming underwater – two of his favorite pool activities).  He starts a 6-week summer school program on Tuesday, and then he’ll have a few weeks more of summer vacation before school starts again.

My mom chose to stay behind as Andy and Jonah and I drove to the “transfer station.”  It is tiring to drive around more after you’ve just driven an hour and a half and you know you’ve got another hour and a half to travel home.  Plus she wanted me to sign her into my Facebook account so she could see baby pictures of the newest member of our extended family.  The computer is a foreign concept to her, and admittedly I have less patience with her than I should.  “Just scroll down!  Point and click on the name, ma.  The name.”  Of course she doesn’t know what scroll down means, let alone point and click, nor can she execute these pre-school level Internet commands.  I left her after a very basic tutorial.

And what a God-awful hot day.  Neither heat nor cold seems to bother Andy all that much (and bothers Jonah, seemingly, not at all).  Andy didn’t even have his air conditioning window unit installed in the apartment; I have no idea how he sleeps in the humid, cicada-ridden, sticky air.  And so the three of us got in the car and drove away with Andy’s boxes of recyclables, Jonah happy and calm, requesting “music on?” and rocking his body back and forth to the likes of Jay Z and Rhianna.

he likes the big pillow I got for the back of the car

He likes the big pillow I got for the back of the car.

And yes, he still has to wear the eye shield.  By now he may be almost resigned to its presence.  He’s got an appointment with the glaucoma doctor on Tuesday, so hopefully we’ll know more then about how much sight, if any, he’s got remaining in his left eye.

Seeming happy kid...

Seemingly happy kid…

…but deceptively so, because on our return ride back to the apartment, we are just riding along when I am suddenly in pain, slammed against the back of the seat like some Mafia move where the backseat passenger quickly throws a cord over his victim’s head and pulls back hard: execution by strangulation.  But I’m not being strangled; Jonah has grabbed a chunk of my hair and is yanking it hard.  “Ah!  Ah!” I yell.  Andy always tells me to say “pull over” if something like this happens but I almost never do/can.  It’s all spontaneous and uncontrollable, whether I shout “Ow!” or simply “Andy!!!!!”

I press into the back of the seat, my head firmly against the rest (he’s gotten me from the space between the headrest and the seat). I manage to work my arm above my head to press the hair against my scalp, since there are a few inches between his grasp on the hair and my head.  It takes the usual 2-3 minutes (though it feels much longer) for Andy to disengage Jonah’s tightly grasped fists from the chunk of my hair, and I immediately get out of the car, my hand still pressed against my head and half expecting it to come away with a whole long lock of my hair.  Instead I got a bunch of tangled strands, and more strands were all over the car (and likely all over Jonah).

Bye-bye hair indeed.

When I got back in the car I pulled the seat as far forward as possible, leaning right on the dash.  We made it to the apartment without further incident, though shortly thereafter mom and I decided to leave because he came after me again.  This time I recoiled back quickly, told my son “bye, sweetheart,” and walked out the door.

My mother played one of her favorite CDs on the way back:  John Williams conducts the Boston Pops with rousing renditions of such patriotic gems as “America the Beautiful” and  “The Battle Hymn of the Republic,” made surreal by the events of the scant time we’d just spent in Rhinebeck.

“I have seen Him in the watch-fires of a hundred circling camps,
They have builded Him an altar in the evening dews and damps;
I can read His righteous sentence by the dim and flaring lamps:
His day is marching on.”
~ Julia Ward Howe

Last night I called to see how Jonah’s day had been after Andy had brought him back to his residence.  Usually Andy calls, but I took a turn.  One of his caregivers told me he was calm and happy for the remainder of the day, having requested (and eaten) a grilled cheese sandwich and then showered and gone to sleep earlier than usual.

For some reason, after I hung up the phone I went deep into my head, calling forth these realities as though they were fresh and razor-sharp instead of the dulled, standard emotions they have come to elicit.  For a few minutes, I was in anxiety-attack mode, feeling as though I’d just dropped him off at the school to live, unreal realizations hitting me in waves of panic and nausea.  Someone else is telling me how my child was today.  Someone else has prepared his food, guided his daily activities, put him to bed.  Someone else.  Other people, far away.

How did this come to be?  How did I come to be okay with it?  Is it just that I had no choice, lest I go mad?

I am glad the floodgates of my angst were dammed again soon, that my mind-storm did not last.  I breathed my way slowly back to the commonplace lethargy of acceptance of our reality, and then I slipped further away – into the cushion of sleep.

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