Posts Tagged ‘jonah’

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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Andy called yesterday to tell me Jonah had a bad tantrum/aggression in the van – not sure where they were going to (or coming from), but Jonah was being all snuggly & lovey with a caregiver one moment, then launched himself at her, grabbing a chunk of her hair.  Another caregiver tried to intervene but Jonah got a chunk of her hair too.  When it was all over, Jonah had two handfuls of hair and a small bruise.

I’d almost rather hear that some kid attacked Jonah and got a hunk of his hair than be told Jonah was the aggressor.

His caregivers are dedicated individuals who deserve to be wealthy, and though I have been assured they are paid better than at some other schools, I still don’t see why they don’t get more for what they endure, and how they love, and why they do what they do…which is essentially to be foster parents for groups of disabled children.

So many things work backwards in our world.  God forgive us all for not caring more about one another.

I know Jonah does not hurt others deliberately, or at least not with malicious intent, and I know he can’t help who he is and what goes on in his little brain…but that knowledge doesn’t fix anything or help the pain I feel when he hurts others.  In all my life I never imagined giving birth to one who harms people.  It’s almost funny.

And in a little more than two weeks he will have his big eye operation to take the Reticert implant out, in a last ditch effort to save what little sight he has remaining in his left eye.  The irreverent thought just came into my mind that if Jonah cannot see as well, perhaps he will at least start missing his targets.  Andy and I will have to be hyper-vigilant to ensure Jonah does not touch his eye shield or try to itch his eye beneath it.

Today I am going to visit my therapist and I will talk to him about my struggle with this ever-cyclic aggressive behavior I can’t accept and have no power to control.  I know better than to hold on to the wish to control it, and I know better than to place blame upon myself, or upon Jonah, or upon God, or upon anything at all.  I know better.  I just can’t help the tears that always come, the feelings that always arise, the frustration I always feel.  The fear that as he gets older and bigger it will only get worse.  Hopefully Dr. A. can help me with all that.

I know when there is a situation I cannot change, I can only change how I react to it.  And so I am making changes.  Now I exercise, eat better, meditate, pray, and take long walks in the woods.  I breathe deeply, in and out.  In and out.

I’m counting on the spring to bring new life, new hope, and new health, body-mind-spirit all working together to find the place inside where things are quiet and still.  Where music plays and my heart rejoices.  Where there is peace.

No one gives their dreams away too lightly
They hold them tightly warm against cold
One more year of traveling ’round this circuit
Then you can work it into gold

They say, “Jonah, he was swallowed by a whale”, hmm
But I say, “There’s no truth to that tale”
I know Jonah, he was swallowed by a song

Here’s to all the boys who came along
Carrying soft guitars in cardboard cases all night long
An’ do you wonder where those boys have gone?
Do you wonder where those boys have gone?

Jonah by Paul Simon

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Andy drove Jonah up to the glaucoma doc this morning and I met them there.  The good part of that is I got to sleep an extra half hour and I got to see my Boo.  The bad part was the damned operation they’ve scheduled to take the Reticert implant out of Jonah’s eye on the off chance that it’s still emitting steroids, in which case we need that to stop.  Jonah, as usual, was very good through all the exams and procedures, the eye drops and pressure gauge.  But his left eye is 20/400 (20/200 is legally blind).  And so May 14th he’ll have his 5th? 6th? eye operation.

After today’s appointment Andy brought Jonah outside and I stayed behind to talk to the doc and do the paperwork.

“Is there anything we can do to treat that eye…to improve the vision?”  I ask doc S.

“Well, if he were a normal boy…”  he starts.

That’s all I hear.  Yeah.  If he were a ‘normal’ boy he could wear glasses that he wouldn’t throw and smash, and he could have the permanent operation to redirect the drainage in his eye, but he can’t…he’d rub his eyes and crush the whole mechanism before it healed. 

Why can’t this doctor just answer the question?

He gives me a brochure about glaucoma.  It’s the brochure I read months (a year?) ago – the one that says glaucoma is an eye disease that gradually steals your vision and glaucoma usually occurs in both eyes, but extra fluid pressure often starts to build up in one eye first.

I tell him I have read the brochure.  I ask him about that first sentence – the steals your vision part.  He smiles at me, answers “if left untreated,” and is already out of the room before I can respond.

If left untreated. 

Well you just told me we can’t treat it, I want to yell after his retreating figure.

I realize I’m painting an unfairly poor picture of Dr. S. here, but what I want is the bedside manner of that rare, wonderful doctor who will sit, listen, and speak to you as though you are an intelligent human being (instead of aiming medical terms over your head then ushering you out the door).  But people rave about this guy.  He has “Best Doctor” awards all over his office.  (Today I noticed he’d re-arranged them). I’m sure he is a fantastic glaucoma specialist who’s great with the demographic of the majority of his patients:  an aging, docile population of ‘normal’ people.   He is kind to Jonah in an off-hand way but never learns that Boo does not converse and is never going to answer his questions about whether or not Santa came or what kind of Easter he had.  It isn’t like Jonah hadn’t been there 10 times or so before.

Grandma?  Jonah answers when the doc asks him one of these questions – and where can the doctor go from there?  I smirk, turn my head.  Way to shut him down, Boo.

And so after the doc appointment Andy brought Jonah to see grandma.  They all drove to the train in grey car and my mom told me later that Boo was good; they saw a very long train which pleased him very much.

Easter was kind of a blur.  Andy drove Jonah up and I met them at grandma’s.

Easter Boo
                        Easter Boo

My mom made delicious food but now it is always pre-packaged up, one for Andy, one for M and me.   There is no pretense of sitting down to eat and there hasn’t been for some time.  It’s better this way.  I love my mom for making the delicious food anyway and for getting Boo a beautiful Easter basket anyway, but I also fight to stay grateful – especially, for some reason, on Easter.  I see little kids all dressed up and going to church after their Easter Egg hunts…I am jealous of that whole piece.

I didn’t even go to church on Easter myself.  My favorite priest is retired and gone, and I wanted his Easter homily only.  I am a one-priest-Catholic, I guess. And now, I love Pope Francis.  His humility and simplicity – his gentle ways, his appeal for peace, for the poor, for the helpless.  It’s not as if I am a good Catholic – or a good anything, for that matter.  But this pope makes me want to identify myself with Catholicism more than any pope before him that I can remember.  I like to keep abreast of what he’s doing and I’m so happy that, whether people are Catholic or not, what he says and does will be a big influence on the world.  We could all use a leader with a little humility, if you ask me.

Anyway.  I don’t really like holidays anymore.  My favorite holiday is sleep.

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“They say Jonah was swallowed by a whale
But I say there’s no truth to that tale
I know Jonah
Was swallowed by a song…”

~ Jonah by Paul Simon

Jonah has a broken finger incurred sometime during this morning’s tantrum/attack/aggression, on the bus that takes the kids up to the school building.  They took him to the hospital, x-rayed his hand, splinted his finger, brought him back to the house.  Not an enormous deal but one that caused me some concern.

His regular nurse was so kind when she called to tell me.  “Jonah is fine,” they always start out by saying.  Sometimes he isn’t – not really, but at schools like this everything is relative.  And he is fine.  He is safe and he is fixed up and it is over.

But I asked her to please contact Andy first next time.  Andy lives 5 minutes away.  I live an hour and a half a way.  I have a full time job, and I can’t be at my desk crying, like I nearly always end up doing.   I’m a crybaby, they need to understand, “strong mother” or no, and you can’t make me lose it at work because then nobody wins.  I need my job.  Let Andy call me at 5:30 when I get home from work and then tell me what happened, unless it’s an “he’s not okay” emergency.  Andy’s willing to do this and we’re going to try this new “leave mom out of the loop for a few hours” plan.

I’m tired of the merry go round.  I want off.  After a while it makes you sick to your stomach.  Your horse or your ostrich or your donkey goes up and it goes down, over and over, while the merry go round itself circles round and round, all with the bad-stereo strains of carousel music playing too loud and endlessly, no way off, no one to stop it all.

I just don’t have the fortitude.


[fawr-ti-tood, -tyood] Show IPA


mental and emotional strength in facing difficulty, adversity, danger, or temptation courageously: Never once did her fortitude waver during that long illness.
They ain’t talking about me, folks.
Ah, but wouldn’t you rather see some new pictures instead?

Our dog Jack has the United States of America on his nose.  Look closely.

Jonah loving Guardian Gus

Beautiful rosebushes

Thus ends a long Thursday.  Across the miles I am holding my son in my arms, so close, smelling his hair, breathing him in, and he is calm, and we have snuggle time, and we are both swallowed by a song…a lullaby…

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Today has been a very hard day for Jonah behaviorally and I don’t feel like talking much about it.

The fact that it’s the 8th anniversary of my best friend Gina’s suicide doesn’t help. She’s been gone almost as long as I knew her.  Of course I can’t wrap my mind around her being “gone” at all, let alone for that length of time.

Time mystifies me.

In spite of my drama, it is absolutely deliciously crisp & autumn-gorgeous outside. And I have a list of good things that have happened today:

Jonah got to see two trains.

We went to grandma’s house, where Jonah pooped on the potty and got some black soda.

Jonah asked for red barn (a favorite landmark he enjoys passing by on car rides) and he got red barn.

My mom bought me a delicious turkey sandwich.

Jonah and I are listening to Guster’s brand new CD, Easy Wonderful, as much as possible, over and over.

Sometimes when he whines and yells incessantly from the backseat, I drown him out:

I was down for the count
Without any real way out
In this new submarine
Like the whale of Jonah’s dreams

What if I should rise up
From several fathoms deep
A scar on my soul
And a humbling tale of the world
That swallowed me whole…

swallowed me whole…




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