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revelation part one

November 17, 2013 by The Never Normal

World English Dictionary
Revelation
(ˌrɛvəˈleɪʃən)

— n
1. The act or process of disclosing something previously secret or obscure, esp. something true;

2. A fact disclosed or revealed, esp. in a dramatic or surprising way;

3. Christianity:

a. God’s disclosure of his own nature and his purpose for mankind, esp. through the words of human intermediaries.
b. something in which such a divine disclosure is contained, such as the Bible.

– 0 – 0 – 0 -<3

It has been a week or two of revelation.  Jonah, sprouting up tall and learning self-calming techniques from his teachers and caregivers, is almost a different child.  Yet Boo keeps it real always, never letting us forget he is and may always be what I half-jokingly refer to as a “punk ass.”

Consider this photo taken yesterday while on car ride:

his arm raised to hit, boo narrows his eyes and sucks his thumb like it's the bad-assest thing a kid could do

his arm raised to hit, boo narrows his eyes and sucks his thumb like it’s the bad-assest thing a kid could do

The difference is he did not hit that time.

I just turned back in my seat and ignored him, knowing my picture-taking, even sans flash, may be pissing him off.  He did not ratchet it up – no pulling my hair or Houdini-ing himself out of the harness.  No dissolving into tears or throwing reachable items from the backseat into the front.

I think he just wanted to enjoy his car ride, unfettered by attention or expectation.  We are beginning to understand one another more, in a strange way I can’t quite explain.  He is getting older, and learning independence skills.

Yesterday he cleaned up after himself like a pro, going overboard like only a child with autism can:  Upon deciding lunchtime is over, Jonah picks up his plate and any surrounding napkins or garbage, opens the garbage can lid, and carefully throws it all away.  (And instead of using the garbage can as a perch/stool…

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…like he used to, more often than not now he will sit at the table).

Then he grabs the potato chips and returns them to their rightful place – in the right-hand cabinet on the left-hand side of the second shelf up.

After that he comes back to the table, grabs up mama’s half-drunk teeny sized can of black soda, grandma’s just-opened can of white soda, and places them gently on the counter next to the sink.

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After pausing a moment to regard their placement, he rearranges the cans so that each faces exactly front and are perfectly next to one another.

“Oompa Oompa?” he asks next, and I start his now-favorite movie, Willie Wonka and the Chocolate Factory, on the DVD player.  Jonah first arranges and straightens the 3 remote controls on top of the TV, then reaches both hands out to similarly straighten the VCR and cable box.

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Andy brings him 2 plates, one with cut-up banana on it and the other with cheese and chives cracker.  Jonah happily sits on the floor next to the coffee table as the movie, at whatever point we stopped it before, starts to play.  My eyes fill with tears.  They don’t fall, but everything blurs as, for a few minutes, he is just a boy having a snack, watching a cool movie.

For a while he got up on the couch and I asked him if I could scratch his back, and he said yes in his cute small voice.  I asked if he wanted me to scratch over or under his shirt.  Under shirt? he requested, so gently I scratched his back.  Kisses? I asked him.  More kiss, he replied, which also means “yes, kisses.”  And so I kissed his head and his cheek and his foot, and we laughed together, and I thought about all the words and concepts he is learning, and how incredibly amazing it all feels.

Yes, last week when he was standing on the bed and I leaned in for a kiss, he leaned in too – and smacked me in the face.  But I’ll take it, if it means the pendulum is somehow holding itself in a mostly good space.

Some more pictures:

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Jonah and his daddy, who loves him very very much.

All good, this time of revelation.

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autism detection in babies?

November 7, 2013 by The Never Normal

So I saw this article today about the earliest signs (in the first months of life) that your child may have autism.  I never thought to write about this before because I don’t want to be one of those people who instills fear in every parent’s heart, but I figure I should share our experience, for what it’s worth.

I have told part of this in The Wayback Machine but it bears repeating, especially in light of the new study.

When Jonah was just 6 or 7 weeks old – before his first vaccination – I brought him to a well baby visit with my wonderfully compassionate and intelligent family doctor, Jacob Reider.  Within a minute of greeting us, he looked carefully at Boo and, very gently, said, “hey, buddy…there’s a human in here” – and waved his hand slowly over Boo’s face.

“What is it?” I asked, the nervous first-time mother seeing nothing at all wrong with her child.

“Infants look at faces,” he told me.  “They love to look at faces.  Jonah is staring at the lights.”

With growing anxiety I recalled that Andy and I had already nicknamed Boo “moth boy” because he loved to look at lights so much.  We were amused by this and nothing more, but Dr. Reider was frightening me, and I expressed that immediately.

“Should we be concerned?” I asked.  He did not panic me — he told me not to worry, that we would keep an eye on Jonah…and we did.  When he did not speak (or seem to understand or communicate) by 18 months we had his hearing tested (no problems there) and then we were immediately placed in the early intervention system, where speech, occupational, and special education teachers came to our home twice a week or so to work with our son.

I was lucky enough to be a stay-at-home mother, so I was there with them as they brought toys and tools to help Jonah.  I believe if it weren’t for our careful, observant doctor, we would never have gotten such early intervention.

By the time Jonah was 22 months old, he was diagnosed with autism by a cold, flat-voiced female developmental pediatrician.  It was a day I will never forget;  I sobbed in my car for a long while before I could drive us home.  I got a second opinion from another developmental pediatrician and, in a much more caring manner, he confirmed the diagnosis.

I  believe that, if presented with 50 one-year-olds, I would have a decent degree of accuracy in picking out the ones who are on the spectrum, just by spending a few minutes with each.  Why?  Because hindsight is 20/20, and now I remember all kinds of signs.  And although I don’t believe all of these things about Jonah indicate autism, they are all things that stood him apart from other babies, almost from the very beginning of his life.

Jonah was vastly different from other babies.  He grunted a lot (we called it growling) almost since the day he was born.  He appeared to be trying to say “mama” as the months went on, but he only could call me “em.”  At ten months old, he was still not talking, and my mother chastised me:  “Why aren’t you teaching him his words?” she demanded.

I was left feeling scared, inadequate as a mother, and desperate to figure this out.  I read to my son.  I cuddled him, loved him with all my heart, tried to teach him.  I felt a phenomenal failure, I had baby blues, and my best friend suicided by shotgun when Jonah was 5 months old.  In short, I was a mess.

Jonah did not play with his toys correctly.  He turned all his Matchbox cars upside down and spun them on the table.  He spun anything he could, including himself, once he could walk on his own (very early, at 8 1/2 months old).  He enjoyed destructing block towers but not building them.

He wanted music, lights, adults, nursing (I nursed him until he was 15 months old) and water — pools, the ocean, his bath — but he ignored other kids as if they were mere obstacles.

And once, when I wanted to try to teach him the word “plane” and there was an airplane overhead, I held him in my arms and pointed to it.  “Look, Jonah, there’s a plane in the sky.”

He stared at my finger, not to where my finger was pointing.  I felt a chill run up my spine.

At one friend’s child’s first birthday party, he refused to leave the entrance, obsessed with opening and closing the screen door.  When we left early, a friend’s 9-month-old son waved and told us “bye bye” — and I deemed the kid a genius.

Of course after enough of these eccentricities in our son became apparent, we knew something was wrong.  The interesting part is I dismissed autism as a possibility together.  I mean, “those kids” crouched in the corner rocking.  They were non-responsive and un-affectionate.  They banged their heads on the wall.  Ignorance.

Our son was engaged, cuddly, and never acted in any way I would have called “autistic.”  He was born so perfect looking and seeming.  We’d won the risky lottery of baby making, avoiding Down’s Syndrome, birth defects, preemie problems, and any other life-threatening or frightening newborn realities.

And so his ultimate diagnosis was a knife in my heart.

Anyway, I do think early detection in infants may be possible.

You need an observant, caring, special doctor, but you can also look for signs on your own.  Don’t be paranoid, but don’t go into denial either.  Never underestimate the power of denial, to quote the Ricky character in the movie American Beauty.

Remember your child is always your child, and the diagnosis will never change that or define him (or her).

Of course if you have met one child with autism, you have met one child with autism.  All these things may or may not apply to other kids.

I just wanted to share our experience, in light of this new study.

If you feel alone, unsure, or just want to e-mail/chat please don’t hesitate to reach out to me.

More about Boo soon.  There are still “winter card” boxes with his card design included, and you can buy them here.  They make great non-denominational holiday cards.

Thank you!

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boo thanks you

October 28, 2013 by The Never Normal

Yay!  Jonah’s school updated their website.  If you click here, you can buy a set of 8 winter-themed cards (2 will be Jonah’s elf) for $10 each.

Boo thanks you!

Jonah made a perfect cave-boy (Halloween of 2003; he was 19 months old)

Jonah made a perfect cave-boy for Halloween of 2003; he was 19 months old

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the now-famous elf card

October 25, 2013 by The Never Normal

I have received a strangely overwhelming number of requests for boxes of the winter cards I mentioned in my last post, so I called Jonah’s school and of course there are extra — plenty to go around.

For the mere price of ten dollars, you too can own one of these “Boo Boxes”!

You can order them from the school’s website, but you’ll notice the “winter” cards look different from those in my last blog post.  (They’re from last year).  So if you want a Boo Box containing Jonah’s design, just wait until I post a blog entry (once the web order site is good to go with this year’s cards).

You can also post a comment saying you want one and I’ll get it for you, and mail it to you too, at no extra charge!

There are eight cards in each box, two each of four designs, so every  Boo Box gets you not one, but two of Jonah’s elf cards!

The now-famous elf card

The now-famous elf card

All for the low, low price of ten dollars!

Be a part of “Normal is a Dryer Setting” history and own one of Jonah’s truly unique brainchildren.  Or just send some cards out, and another person will find one years from now in a dusty flea-market bin when it’s out of print and worth millions.  Do you really want to take that chance?

All proceeds benefit the Anderson School for Autism.

Jonah ponders his next masterpiece

Jonah ponders his next masterpiece

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hopeland art auction

October 20, 2013 by The Never Normal

Every year at Jonah’s school they have Harvest Day with food and fun, games for the kids, school tours for the parents/grandparents, etc.  Harvest Day 2013 was this past Saturday; my mom and I went together to visit Jonah’s classroom.  Andy had taken him for an overnight the night before, so we visited there first, then drove the 5 miles to the school, and back to the apartment afterward.

So we saw Boo’s classroom and spoke with his teacher and an assistant teacher.  We snacked on apple cider & apple cider donuts, looked through piles of worksheets and construction paper creations (plus one bottle of blue water with “fish” and “sand” in it).  I loved at it all and brought everything home with me, even unrecognizable scribbles or coloring books he’d made out of pages and a piece of string to tie it all together, the pages crayoned heavily, each in one color only and with no attempt at staying in the lines.  It was almost as if he didn’t see the picture at all and instead just filled the page with color.

They also told us Jonah has been mostly very happy and good in school for a few weeks now (and his residence peeps say the same thing), and my mother and I were both thinking:  It’s when the doctor lowered the steroid eyedrop dosage from every two hours to just twice a day.  Maybe that’s it, and now his aggression will dissipate.  Please God…

One doctor told me when you are given steroids through eyedrops, it doesn’t really have very much effect on mood or behavior.  But I was once a Deadhead, doc, and have seen people use an eyedropper to take acid because it was the fastest way to get the drug into the system –better absorption, quicker effect.  So I find it hard to believe that steroids, no matter how they’re given, don’t have any bearing on Jonah’s behaviors.  In fact if I piece it all together (which this blog helps me do), his behaviors began the summer after we started him on steroid eyedrops, back before we knew he had iritis or uveitis.  Andy noticed his eye was red so we took him to an eye doc, and the first eyedrops didn’t work, and the whole saga began.  Nearly four years ago? 

So now Jonah has no vision (or hardly any) in his left eye, but his behaviors are more easily avoided with positive reinforcement and by reminding him it’s okay if he needs to take a break.  All he has to do is ask for one and he gets it.  I think it’s even in his IEP.  These people who teach and care for Jonah have good ideas and incredible dedication.  They are happy, optimistic, hard-working.  They are amazing.  And God help me but I don’t so much mind the trade:  sight in one of Jonah’s eyes for his overall happiness and well-being – for no more aggression, or way less of it.  Maybe the steroids caused the aggression the whole time…

…and yes we both know correlation does not necessarily imply causation, but then again sometimes it does, dammit. Sometimes it does.  We are in hopeland, holding tight to the pendulum lest it swing back, as if we had the strength to keep it from doing anything but what it does.  But Jonah has been happy, lovey, laughing and giggling – at the doctor, at Andy’s apartment, during our car rides:

happy boo

happy boo in andy’a apartment.  needs a napkin!

happy boo

happy boo at the pediatric rheumatologist, rocking the wrinkled collar

happy boo

happy boo, laughing on a car ride

Of course I could be wrong about it all but hopeland feels good and is so filled with joy – there really is no reason to leave.

But I digress.

Only one couple was there when we were talking with Jonah’s teachers, and they left the room after a bit, so my mom and I could ask more questions about Boo.  Seems his favorite day is Friday, when he can declare/ask no school tomorrow?!  I suppose in this sense he’s like a lot of other 11-year-olds.

So on the way out, we stopped at a table where two ladies were selling cards.  A set of 10 is $10, and you get two cards each of four designs, themed for summer/flowers, wintertime, etc…and every design is created by a student at the school.  Last year I bought two packages, and I was planning to buy two more.  I chose two ‘summers’ and was about to pay when I first introduced myself.  “I’m Jonah’s mother,” I told them, figuring they’ll know who he is — he’s the only Jonah in the school.  “Oh!” one of the ladies said.  “Jonah has a design this year.”  And she pulled out the “winter” package. 

I immediately dropped the two others and bought two “winters” without even seeing Jonah’s design.  I was so eager to look through them, and amazed that Jonah’s artwork has been chosen for a card!  I mean, the designs are always pretty good – and some are really good.  But Jonah just isn’t interested in art or drawing.

Therefore, I found all this hard to believe.

The cards come in see-through plastic packages, and the card you can see through the front panel of the “winter” package is this:

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Cool, right?   I thought so.  Here’s the next one:

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Downright amazing, yes?  I was secretly hoping this one was Jonah’s – but no.  The third card out of four was next:

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Nice use of cotton for the snow, right?   Another goodie.

So last comes Jonah’s masterpiece, entitled, simply, “Elf” — of course I loved that he did an elf…

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It was all I could do not to crack up laughing right at the table.

I’m thinking to myself, this is the card in the box that people don’t even send.  I love it with all my heart, even as I laugh.  I’m so proud of my Boo.  You see how he signs his name?  He starts off on the right, with JON — then moves over to the left side to add AH.

HOPELAND ART AUCTION:  We’ll start the bidding at a hundred dollars.

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i don’t want to know

October 6, 2013 by The Never Normal

What’s amazing is how long it sometimes takes me to tell a tale of Jonah, or research something about a drug he’s taking, or read his progress report after I’ve opened and discarded the envelope.

There is one such progress report, in fact, sitting on the coffee table in front of me, right now – just an arm’s length & reach away from being read – but I don’t read it.  I don’t want to read it.  I don’t want to read about his goals to “independently identify six sight words,” with staff notes speaking of his wonderful progress to “read 5 sight words with 20% accuracy.”  I don’t want to call his residence at night to ask how he was and what he did that day, and I don’t want to know there’s a class-action lawsuit commercial on TV now against one of his med companies.

I approached a renowned autism doc (his cousin is my mom’s neighbor) about different meds but he wouldn’t touch my question with a 10-foot-pole, answering in his e-mail back to me that he could not comment.  I e-mailed my neighbor Chung Wen’s son, who is a doctor, and more specifically his field of study is pharmacokinetics, (how drugs get in and out or metabolized), and he has offered to help me, so I finally sent him the list of meds.  I wanted to wait until Jonah’s meds stabilized post-eye-op, so it wasn’t until this morning that I sent the e-mail.

If he replies, I guess I won’t want to read his e-mail either.  I want to know there is away out of this for my boy and I have a sinking feeling there isn’t.  I am afraid to mess with his meds.  I guess I’ll have to see if any of the questions I’ve thrown around get answers.

The wonderful thing about everything, however, is how Jonah has been happy lately, a silly boy laughing with his mischievous sense of humor (splashing water out of the tub, running & jumping around and trying to avoid a capture to dry off)…on Saturday I heard my favorite words, “more kiss,” many times.

Of course more kiss! 

When Boo is in a lovey mood it melts my heart.  I love when he’ll pause in all his joyful silliness to lay on the big blue bed with me and have quiet time, lying facing each other and giggling.  This lasts a minute long at best but carries me through many a night.

I took a bunch of pictures on my new LG Spectrum 2 phone (whatever that means) and have yet to figure out how to download things onto my computer.  I hate reading manuals and so my knowledge consists of much trial and error, and a lot of “I’ll figure that out later.”

I don’t understand how I can download an app that turns my phone into a flashlight, for instance, but I haven’t the ambition to wonder why.  Perhaps as you enter middle age (is that where I am at 44?) your mind can’t wrap itself around some of what is coming up behind and all around you, particularly in the realm of technology.  I hear tell they’ve invented an actual invisibility cloak and light saber. The mind reels.

One thing I dislike is waiting to be divorced.  It’s just a slow process.  The mediator wanted to know my new health insurance company, and then they have to mail edited shit to Andy, and then I have to bring it all into the office (I guess by coinflip I am the plaintiff here) and then I hope it’s over soon.  It is much harder emotionally than I thought it would be, even after the years of separation.

I have to not think too much about how it was when Andy and I first dated, and married, and how it used to be until Jonah-Boo, the “baby-est angel,” was 7 months old and my best friend Gina suicided, shotgun to the head.

Maybe that was the beginning of the end in a lot of ways.  I don’t know.

I guess I don’t want to know.

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boo riddle-y

September 26, 2013 by The Never Normal

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:

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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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darwin’s poster children

September 19, 2013 by The Never Normal

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

September 11, 2013 by The Never Normal

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
Undisturbed
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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out of the ocean

September 7, 2013 by The Never Normal

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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