Archive for September, 2013

boo riddle-y

Not writing here feels like holding my breath.

Jonah has been largely aggression-free for a while now.  I say “a while” because I don’t think of time in terms of hours days and years anymore….at least not in the way I used to.  Boo’s every moment is a possibility; his focus flits and alights in bat-like erratic patterns of flight.  He soars and crashes.  Sometimes, when he is soaring, I feel a superstition of sorts – as if not writing about him will protect him from the pendulum’s swing.

Boo ridlle-y.  On Saturday he laughed and spun, ate well, sang a little, watched train-on-TV, and rode happily in the car, rocking to his tunes (he enjoys Emancipation, daddy’s double album CD by Prince right now) and making funny, silly, happy faces:





All I want is his happiness.  That’s really ,when you get right down to it, all I want.

I am grateful for it.  I take pictures of his happiness, over and over, to remind me it is there even when I cannot see it.  I am grateful today for so very many things.  Boo’s school & caregivers.  His daddy.

For the fact that I woke up free of pain and able to breathe and see and walk and write.  For the incredible freedom of working from home – to be able to write and make a good living of it.

And I am grateful for Boo’s right eye, for we were all wrong about the left.  He’s nearly blind in it — maybe he can see shapes but that’s about it.  He had cheated on the other test.  In almost every picture of him now you can tell his left eye isn’t quite right.  The amazing thing is Jonah seems not to mind so much.  I think maybe this is yet another blessing for those on the more severe side of autism:  Maybe these individuals have no expectations from life.  They just live it and react accordingly to stimuli, perhaps even instinctually, in whatever way they can in order to move through what must seem a very foreign world.  There is joy for them here, and there is sorrow, but it is not the same as ours and never will be.  Theirs is a pure innocence and a soul unsullied by envy, shame, jealousy, guilt, bitterness… so many wonderful things to be without.

I think maybe I need to try harder look at things from Boo’s perspective – to watch and listen and tune-in to him more, instead of being so reactive (something I’m almost body-trained to be from his aggressions).

I am looking forward to Saturday.  My hope is relentless, week after week, in the face of any possibility imaginable.  If that is the definition of crazy then there it is.  I can be that kind of crazy.  I can be anything I need to.  I am pliable, lithe.

Thank you is my prayer today.

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I’m sorry I haven’t been around, writing of Boo and his adventures.  As I slowly recovered from one illness, writing work came in and I had to play catch-up.  Then I got sick again.  Today I can at least sit here for a few minutes and type.

I’m kind of a sickly chick.  I am not Darwin’s poster child, and I guess when one of Darwin’s weak ones has a baby, that baby is bound to be a weak one too.  I’ve been thinking too much about this, too much about the suffering world.  When I am so sick it is easy for me to be a baby, to cry, to let the floodgates open and allow ugly, frightening, depressing emotions pour in…to allow my body-pain the company of emotion-pain.

Jonah has turned his two days from last entry’s poem into a long strecth of good boy.  The truth is he thrives at his residence and school. Although he loves to visit with daddy and still protests going back to school when the visit is over, it is the best place for him to grow and learn.  We are resigned to that now.  We are grateful for it.  But still we hate it.

I haven’t stopped searching for a way to mitigate Boo’s aggressions, and I haven’t stopped wanting to fill up my “help” page with resources for others in my situation (or a similar situation).  I even want to start two new blogs – a Guster blog and a Laura Ingalls Wilder blog.  God knows when I’ll get around to making it all happen, but I plug along.

I will be back soon.  I found my camera battery, so pictures are coming too.  🙂

I could type on and on today, but I don’t want to. I’m not in a good head-space and I need to sleep a little more.

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watchful tree

An eye-like impression on Boo’s birch bark
Keeps innocent watch where he sleeps

Or sits alone.

White.  Shingled, peeling, always in the midst of it.
The shedding is a constant shaping.  Summer is closed.

School begins, winds blow & bend.  Boo attends.
There are no photographs to share.  People ask us nothing.

He would be starting sixth grade but for this:
Branching cells inside, neuron dances gone awry,
Whipping leaves that lash & cut, pull & fall…

And yet for two days now the birch has stood
And Boo walks in happy imitation, his mood impermanent as paper
(Covers rock, loses to the scissors)

His mood impermanent as paper.

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I’m in the grocery store a few weeks ago with my 89-year-old Chinese neighbor, Chung Wen (who said I could use his name).  His wife of more than 60 years died in a car accident in January; I have befriended him.  At first he cried a lot and I would mostly hug him and try to comfort him.  Now he likes to go grocery shopping and come along on errands with me. I try to teach him how to say things in English, and we drink tea together nearly every morning.

So we’re looking at different seltzers because I’m trying to give up soda and, little by little, all processed foods.  I want to take them out of Jonah’s diet altogether too, but that’s a whole different story.

I’m trying to decide on the flavor I want when this random dude comes up to me, points to my shirt, and says “who’s that?”

I was wearing the one on the left

(I was wearing the shirt on the left)

So I tell the guy I don’t know who the woman is – but that it is a Guster shirt, and they are my favorite band.

Without further conversation or introduction, the guy announces Guster’s next concert date, co-bands, venue, city & state.  I also know Guster’s next concert date, co-bands, venue, city & state, so of course I am intrigued.  Have I found another *Gusterrhoid?  I ask him if he likes the band Guster too, because let’s face it, they’re not a household name like Beyonce or the Rolling Stones – and he replies with undisguised lack of interest: “they’re okay,” he tells me, immediately extracting one of Guster’s co-bands, the Barenaked Ladies, from this equation, and announcing their next concert date, opening band, venue, city & state.

I am more than slightly taken aback.

But I also immediately recognize that this man has autism – and more so – that I have most probably stumbled, in fact, upon a savant.  Chung Wen is watching all this with patience and a small smile of confusion.

Unfortunately, I don’t get the chance to engage the man any further; he needs to finish his shopping, he tells me abruptly, cutting himself off before listing a beautiful geometric chain of bands, their next concert’s dates, opening bands, venues, cities, & states.  We say goodbye to each other, and Chung Wen asks me if the man wanted to date me or see me again.  Some things are hard to explain to Chung Wen, so I just grin and say “no.”

I seem to run into adults with autism a lot.  I am instantly protective of them, interested in them – I have a reverse sort of prejudice toward them, you might say.

When we get home Chung Wen insists on helping me unload all the groceries.  Though he is 89 he is strong as a bull and sweet as pie.  I used to see him walking down the street with his wife, but I never introduced myself to him until after she died.  Almost every time I see him, he tells me before he met me he was drowning, and I have pulled him out of the ocean.  Out of the ocean.  I am humbled by his persistent insistence; I look into his eyes and see he means it from his heart.  He tells me his wife will help my son.  Whether or not this is possible is secondary to the fact that he believes it to be so, and therefore it is a great gift.

I think of how we’ve started to listen to one another’s music – I’ve played Guster’s songs in the car, of course, including “On the Ocean” and “Jonah,” and he sings along with made-up syllables.   I’ve am blessed to know Chung Wen, for he is a good friend, way more grateful to me than is deserved.

Jonah’s first day of school was this week, and he got through it well enough — at least well enough so Andy did not get a call from C, the lady who notifies one of us when there has been a “behavior,” to tell us of its extent and cause, if they can identify one, and the outcome.  On the second day, however, when his caregiver met Jonah to walk him back to the residence, Boo went after him, trying to attack.  The quick-thinking caregiver began to run toward the house, Jonah chasing him down and wearing himself out in the process, ultimately fizzling his aggression-yelling down to a disgruntled hum.  I would consider this sprint/escape method as a possible permanent solution to Jonah’s aggressions, but for the fact that Boo can outrun me and probably half the staff on campus as well.

I continue to feel better, though excruciatingly slowly, day after day.  Today was my first day out of the house, when I drove down to visit Boo with my mom.  I was weak but it was a beautiful day and I held close an optimism and hope that Jonah would be good.  I didn’t get to see him last week but neither, really, did my mom, who drove down by herself only to have Jonah flip out on campus before they could even drive to Andy’s apartment.  The visit was over before it began.  Andy’s glasses were mangled in the melee and he had to tape them up and drive to a nearby city to get them repaired.  My mom left him the food she’d brought, and I guess Andy was able to visit Boo for a while later in the day.

Today was only slightly more successful.  We got him off campus, but barely.  Before we drove out of the gates Jonah grabbed a huge handful of my hair, right on top of my head, even though I tried to use the big grey pillow as shield against his sudden anger.  Andy quickly pulled over and disengaged Jonah, but only after lots of hair was pulled and mangled.  Andy asked if I wanted to just bring him back to his residence but I said no, let’s try — and we did try, and for a while Boo was okay.  He gave me two sweet little kisses and we had some fun listening to the radio on the rest of the ride to the apartment, though my mom insisted she get in the backseat this time.

The backseat’s like the lion cage.  Who dareth enter?  Grandma!

My mother made it all the way to the apartment without incident.  Luckily Andy’s apartment is close by and Jonah enjoyed his turkey sandwich and chips and bath, all while watching Train on TV.  The trip to the transfer station, however, was fraught with much distress, Andy having to pull over three or so times to disentangle Jonah from his Houdini-like attempt to free himself from the seat harness.  Jonah had his feet pushed into the front, kicking, all stretched out and crying in a pissed-off kind of way, one moment weeping sadly and the next ready to kick ass.  We calmed Boo down, put his selection of techno music back on, and drove him just one more mile or so against his instruction demand:  That way!  THAT way! until we got back to Andy’s street.

And I forgot my camera today.  It’s just as well.

My mom and I did not stay much longer after that.  Jonah remained in the back seat, waiting for more car ride, sucking his thumb with something like urgency as I kissed my hand and held it to the car window.  He touched his hand to the window too.  Andy and me and my mom all said our goodbyes, and off they went.  I have no idea how Jonah did after that, but at least I got to visit for a short while and interact with Boo in between meltdowns.  I hope he was good for Andy the rest of the day, though I sure wouldn’t bet on it.  When I got home I took pain medication and collapsed into a long nap.

As I’ve repeated ad nauseum, trying to figure out what is upsetting Jonah is too often akin to tackling some equation in an astrophysics class (says the astrophysicist).  His routine has of course been disrupted from school beginning, so there’s that to consider.   Poor Boo.  I want him to have fun and enjoy our visits.

I feel like the tide should be turning again, that he will be cycling into another period of calm and happy.  I hope so.  I sure wish we could figure out the times of the tide.

I sure wish someone could lift him out of the ocean.

*Guster’s loving nickname for their fans

Oh, and by the way – we’re not going back to that eye doctor again (the one Jonah has attacked the last two times we tried to go) and nobody is upset about it – not Andy, not me, and most certainly not Boo.  His next appointment is with the retina doc we all like, and perhaps she can recommend a different glaucoma doc for him.  This next appointment is on Friday the 13th. 

Never a dull day.

Jonah’d be a top candidate for a reality show, if I were to take up the notion to exploit our situation.  Here Comes Jonah Boo Boo?

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In the present world, this technological, psychotic, politicized, nonsensical world, you have to believe that the good guys are going to win.

~ Rufus Wainwright

The meek shall inherit the earth.

~ Matthew 5:5

Jonah is unashamed of who he is, and he harbors no hatred to anyone.

I read an article today about a stranger in North Carolina who paid for dinner at a restaurant for a family with an epileptic son.  The mother’s name is Ashley England and her son, Riley, is 8 years old.

“I’ll try to do this without crying,” the waitress told the family, according to WBTV.com. “But another customer has paid for your bill tonight and wanted me to give you this note.”

England said Riley, who is nonverbal, gets frustrated because he can’t speak, and he had been especially rowdy during the meal.

“He threw the phone and started screaming,” England told WBTV. “The past few weeks have been very hard and trying for us, especially with public outings. Riley was getting loud and hitting the table, and I know it was aggravating to some people.”

Ashley said the mystery diner’s random act of kindness brought her to tears.

“To have someone do that small act towards us shows that some people absolutely understand what we are going through and how hard it is to face the public sometimes,” she said. “They made me cry, blessed me more than they know. I felt like out of all the rude negative comments we are faced with, these outweigh them. The people who care. Little did he know what struggles we had been facing lately, and this was surely needed at that moment.”

I needed to read that.  And she’s so right: out of all the rude negative comments we are faced with, these outweigh them. The people who care.  I’ve been in such pain – nearly constant physical pain, the worst of my life (though it’s going away now)…and perhaps that’s why I reacted so emotionally to the icky troll comment.  Thanks for all of you who rose to my defense or left a comforting comment.  On a better day I’d have approved it, ignored it, and moved on.

I’ve been told by a few to just delete rude/mean comments from trolls or whomever, but I want them to have their say.  Maybe just so they can hear how idiotic they sound, or to remind myself of exactly how good the “good guys” are in comparison.  It’s like the physical pain I went through….which, incidentally, was worst on my birthday.  Pain reminds us how awesome it is to feel no pain.  Cruelty reminds us of how awesome kindness feels.   Balance and all that.

So not to worry, my goodfolk…I am neither crushed nor angered anymore at the comment.   Ignorance is simply lack of knowledge, and judgement is just an easy way to elevate oneself to a false level of confidence or ego.  The minute we start pointing fingers at one another we have lost the truth — that, really, we all could use a good long walk in a million pair of moccasins, each representing a different path, a different perspective.

I found this commentary about the meek inheriting the earth:

“The meek are those who can bear insult; are silent, or return a soft answer; who, in their patience, keep possession of their own souls, when they can scarcely keep possession of anything else.”

I like that.  I sometimes feel I’m the epitome of meek.  I’m not one for ‘soft answers’ but perhaps it’s something to strive for…and I’m not sure if I have learned patience so much as had it thrust upon me until I had to adapt to a patient mindset or go insane….but I’ve certainly got possession of my own soul, even when I can scarcely keep possession of anything else.

Boo has scarcely been on my radar screen through all this sickness, if the truth be told.  I missed my visit last Saturday.  I invite you to call me a bad mother, because frankly, Ms. Ickerson, I don’t give a damn.  I was in such pain all I could do was cry and pray.  Jonah’s father has picked him up for visits all week and through the fog of pain meds, I hear tell of a boy who is acting his usual self — unabashedly joyful, sad, hungry or angry…but always my sweet, precious Boo.

I’m hoping to move from the bed and the couch soon back to the outside, where my morning glory vines, stubbornly massive in their green reach, have finally bloomed into sky-blue streaked white flowers.  I’m hoping to feel better enough to see my boy on Saturday and hug him tight.  And I’m grateful I have told the un-sugarcoated truth for years now and have heard resounding cries of love and support in return.

Thanks so much.

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