Feeds:
Posts
Comments

Archive for the ‘Uncategorized’ Category

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:

OLYMPUS DIGITAL CAMERA

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

OLYMPUS DIGITAL CAMERA

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

OLYMPUS DIGITAL CAMERA

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…

???????????????????????????????

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.

Read Full Post »

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.

Read Full Post »

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:

OLYMPUS DIGITAL CAMERA

???????????????????????????????

???????????????????????????????

OLYMPUS DIGITAL CAMERA

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.

Read Full Post »

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.

Read Full Post »

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
Undisturbed
And Boo walks in happy imitation, his mood impermanent as paper
(Covers rock, loses to the scissors)

His mood impermanent as paper.

Read Full Post »

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?

Read Full Post »

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.

Read Full Post »

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:

OLYMPUS DIGITAL CAMERA

jonah battles daddy with a purple "noodle"

the pool - his favorite place

the pool – his favorite place

OLYMPUS DIGITAL CAMERA

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

Read Full Post »

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.

Read Full Post »

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.

OLYMPUS DIGITAL CAMERA

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.

Read Full Post »

« Newer Posts - Older Posts »