Archive for August, 2013

Someone left a cutting, cruel comment on my “let there be sight” post.  I approved it for all to see.  You be the judge.

Your son is, what, 12?? And you’re bathing him and giving him “mamalove” kisses everywhere? Inappropriate much??! ? Beyond icky.

Interesting that you claim to love your Boo — yet institutionalized him. You see him once a week for a few hours. This is love, how, exactly?  Boo learns to love and live and peacefully exist in the world by… not living with mommy or daddy??

I used to judge people too, for “institutionalizing” their children.  I used to judge people for all kinds of things.  And now I am judged.  I suppose that is how it works.

I don’t know when I will be able to come back and write here.  This coincides with a serious health issue I’m dealing with; I may go to the ER tomorrow.

Oh, how words can hurt.  Hurt like fire.  Even worse than the health issue, which hurts so bad I have to knock myself out with Tylenol PM every night.  M told me “if you’re going to post all your personal shit out there for everybody to see then that’s what you’re going to get.”

Here are pictures to soften the blow to my body and my heart:


jonah battles daddy with a purple "noodle"

the pool - his favorite place

the pool – his favorite place


Goodbye for now.  I can’t handle this.  Maybe I can’t blog anymore if I can’t handle the haters.

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Um….what happened to my blog?  I don’t know what I did or how to un-do it. Help!  Someone?  Anyone?

UPDATE: Thanks to Word Press’ quick help, my blog should look better now.  YAY.

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For the first time, mama was the one who got ditched on last Saturday’s ride to transfer station.  “Want grandma?” Jonah asked pleadingly.  I was happy she got the chance to ride along, for once.  I guess during their ride Jonah had a small meltdown, but no injuries were reported.

While I waited for them I took Clan of the Cave Bear off Andy’s bookshelf, and sat on the front steps reading my favorite parts.

the sun caught Jonah's "octopus" and made it glow

On the ride from Anderson to Andy’s house, the sun caught Jonah’s “octopus” and made it glow

My mom brought down a small cake, a candle, two cards with gifts (one from her and one from my aunt T and uncle D, who always loved Andy), and some Happy Birthday balloons to celebrate daddy’s birthday.  Jonah especially loved the cake, and he carried the balloons around while he watched train-on-TV.


Boo, loving some colorful birthday balloons!

Boo, loving him some colorful birthday balloons!

Jonah has three weeks off from school now until regular school starts in September.  Andy takes him for a visit nearly every day, and I hear tell from him that Boo has been a pretty good boy.

His new favorite food request is green cracker? which are those packages of 6 crackers-n-cheese.  He calls it green cracker because his favorite kind is the one with chives in it.   Boo seems to like a lot of stuff I wouldn’t even think of eating until I was an adult:  cream cheese, sour cream, bleu cheese, salad, you name it.  Also “fie-cheese-zanya” which translates into five cheese lasagna, a frozen meal Andy sometimes prepares for him.  There are times Boo eats one food after another.  Tuna fish sandwich and chips done?  Okay, how about some donuts?  Donuts eaten?  How about some salad?  I sit and think really, kid?  Dessert does not necessarily come last, and requests for all manner of foodstuffs must finally be refused lest Jonah explode or get sick.  Good thing he has his mama’s skinny frame and fast metabolism.

The other night I was trying to sleep and an oft-buried thought came to me unbidden:  What is going to happen to my precious little Boo?  Where Jonah is concerned I live day to day, mostly by necessity.  But he will be 12 in March, and I’m too old to pretend the years do not slip past as if on an ever-speeding conveyor belt.  It has no OFF button (well I suppose it does, when we die) but continues on its relentless journey forward: gears cycling, turning, and spinning just like Boo.  It foretells a formidable future.

I need to call the school and talk to them about this.  I think they start pre-vocational training at age 12, and I know they have a mock apartment to teach independence.  I understand they guide the children from one life phase to the next with expert care.  But the aggression!  What of his behaviors?  Who wants a randomly biting, hitting, kicking, object-throwing janitor or grocery bagger?

Will he be able to live in a group home if he still has those behaviors?  What is the alternative?  Move home to his aged mama to beat her up all day?  What happens to all these people with autism who were in the first phase of the “epidemic” and are now entering adulthood?  Do we have the resources to care for these individuals?  Are we prepared for large wave after bigger wave of young autists entering society?  Do we know how to appreciate the gifts they have and not simply try to make them all just like us?

Can I get Jonah to a peaceful point before he ages out of Anderson?

My mother insists on it.  She wants me to give this gift this to her, to use all resources, do anything I can, pull out all the stops, and make it happen.  She tells me she wants to die in peace.  (She is 70 years old and to the best of my knowledge she is not dying – at least no more than any of us is dying).  Of course I want her to die in peace…but she’s giving me a tall order.

Mama the magician.  Better polish my wand.

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Jonah has a new favorite song – “Topaz” by the B-52s, on the album Cosmic Thing.

“Our hearts are traveling faster,
Faster than the speed of love
Straight through a tear in the clouds
Up to the heavens above…”

I think it sounds like the Tom Tom Club, who used to play with the Talking Heads.

On Saturday I wasn’t feeling well and suddenly, neither was Jonah – as if he could catch something from me immediately.  My mom and I brought lunch as usual, and we’ve also brought water to Andy in jugs each week, since he has hard water (sounds like an oxymoron to me).  Jonah ate well, then requested more food, and more food, and more food.  More, even, than usual; we had to cut him off. 

During both rides he requested “Topaz?”  – a song I didn’t remember.  Andy put the album in and Jonah nodded along to it in the backseat on the ride to the transfer station.

he's starting to feel a little icky here but still has a smile for mama

He’s starting to feel a little icky but still has a small smile

When we returned to the apartment I curled up on the couch.  I watched Andy pull a chair nearby and take Jonah in his arms.  Boo listened, and occasionally watched, “Train on TV.”  He melted into Andy’s arms and sucked his thumb.  We both lay, sickening with every moment, he and I.  It was a weird “E.T. and Elliott” feeling.

For a moment I indulge in the E.T. fantasy.  Like E.T. I languish while Boo rises up, and out, of how sick he felt.  My organs fall sleep as his brain begins awakening, rearranging itself into the neurotypical  — just like any other boy…communication at the cost of utter innocence.  My heart pulses weakly and stops.  A very fair trade.  But like E.T., I come to life again and some UFO peeps take me back to my home planet.

I found so much comfort in the incredible love he has for his daddy – for how inviting and strong daddy’s arms are for our little Boo.


In truth, though, there was no E.T. outcome.  We both stayed sick, Jonah later throwing up and me returning home, escaping to sleepy bye land.

But we both recovered quickly, and Jonah has had good days since, swinging high on the playground right outside his window, then jumping off and running free – faster, even, than the speed of love.

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This morning I met Jonah, J, and P (his transporter/caregivers) for Boo’s retina doctor appointment.

It was raining out as I walked over to the van to greet them, and people going into the building either had umbrellas or were running to get to a dry place.  But I love being out in warm rain (and even pouring rain, if I’m at my house so I can go inside and change).  Jonah’s like me.  He stepped down from the van to the pavement and we danced around in the rain for a minute before going inside.  I greeted him with kiss and blue octopus and fruit snacks, and he was in a happy mood.  He sat nicely in the waiting room, too.

fruit snacks + blue octopus = happy jonah

fruit snacks + blue octopus = happy jonah

As we waited in the exam room for the doc, he sat on his legs, facing the back of the chair.  Then he lowered his torso and let me scratch his back and give him a little massage.  More here, he’d say, moving my hand to the spot he wanted scratched.  He even stuck his butt in the air.  “You scratch your own butt,” I told him, and he giggled.  He does have a sense of humor, my Boo.  He asked for kisses on his elbow, shoulder, head, and belly.  I tickled him and got more laughs.

He never lets me do this and it is wonderful.  Rare like a jewel.

He lifts his shirt so I can scratch and rub and kiss his back.  Kiss neck? he asks, and I happily oblige, pouring a weeks’ worth of love and affection into every touch and every kiss, whispering to him how much I love him, how he is my angel.

Boo was great for the doctor, too, tipping his head back like a pro for the eye drops.  The pressure in both eyes was 12 (very good) and the doc said she could see the back of the left eye some, finally.  When she tested that eye, he pulled his usual bullshitting: “A…X…J…G” – no matter what the letters really were…as if he thought he could outsmart us by declaring the letters with confident, rapid clarity.  So I’m in the corner laughing with P and then the doc tries holding her fingers up instead, and he could tell her how many fingers correctly from about a foot away.  This is super-encouraging because it means there is still sight in Jonah’s left eye.  And maybe it’ll even improve.   Best news of the day, hands down.

My boy has had a good week behaviorally, following a crappy week.  I’m starting to accept the uncertain cycle of this, for the time being anyway.

I’m writing so much that these newly-August weeks are filled with work; I took on a temporary assignment for standardized test passages in addition to my other job with Modest Needs.  I have two deadlines swiftly approaching.  That’s just fine with me. When you love to do something, they say, it ceases to be work – and I agree.  I love my job(s).  At the tender age of 43, I’ve been set free of the rat cage.  It almost feels like retirement, sans boredom.  I have nothing to complain about.  No matter what happens, I have been blessed.  Nothing can take that away.

Tomorrow my mom and I will drive down to Rhinebeck as usual, hoping Boo will be like he was today – but even if he’s aggressive and impossible to handle, he can see out of both eyes, and that’s what I’ll be most thankful for, no matter which Jonah the world hands us.

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