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Archive for the ‘The Anderson School for Autism’ Category

I got to see Boo twice this week, which was awesome, and he was a happy kid both times, which was even better.

On Thanksgiving Day my mom had home-made all kinds of traditional dinner dishes and then, as she has been doing for several years now, portioned it out into containers for Andy and for me.  She’s an awesome woman and grandmother and mom, and I sometimes can’t believe what she will do for the people she loves.  Her heart is big, and full, and loving.

She even makes her father’s stuffing (my “poppy,” who died in 1999)  – an amazing and difficult concoction of deliciousness I can’t even begin to describe.

Andy brought Jonah up around 11:30am – Jonah’s always begging for “grandma’s house?” and so this was indeed a grand occasion.  We even had a beautiful day, for it had snowed the day before and there were 8 inches or so on the ground, white still newly-clinging to the branches and bushes against a happy blue sky.

Because we had our dinners packed up to eat later, my mom had also made sandwiches for our lunch.  Jonah, however, likes to search every compartment, cabinet and crevice for different and unusual food choices- especially at grandma’s house.   There was bacon in the freezer, cooked pieces my mom makes a few at a time and then stores away for later.   Once he saw that, Boo knew what he wanted.   If you listen carefully at the very end, he comes over to me and says “and the boobie,” evidently intending to fish down my shirt.  Not happening, kiddo.

He even got to see a train, on a car ride a few minutes after that video was taken.  Sometimes it’s not until I watch videos of Jonah that I realize his level of functioning (both below, above, and beyond others) and can see how very different he is from other children.  I don’t spend a whole lot of time with kids in general, and when I do, they seem like mini-adults or special other creatures who act and look like strange little beings with superskills.

This video from yesterday is an example, too.  Jonah listens to and likes what he likes, without shame or any concept of cool and uncool — none of that “these songs are for toddlers and I’m going on 13.”  I love it.  It’s all very loud; Jonah likes his music cranked.  In the video he says he wants black soda, but quickly decides to try and thieve both mine & my mom’s white sodas.  Having succeeded in making off with mine, the fun begins.

Oh, he is a funny, sweet little boy when he’s happy.  Lately he has been exploring a little more music but definitely has his favorites (his current favorite song is Prince’s Sign of the Times and he asks for it over and over by announcing its track number.

In this video from yesterday he’s jammin’ to Third Base.  He looks like a little gangster, silly Boo.

He hasn’t been great in school lately – more aggressions.  The school called me last week and said they were going to have a meeting about Jonah and whether or not it might be better to transfer him to a different classroom.  The concern is that he’s bright, and bored, and needs more to keep him occupied.  You shine like the sun, my son!  We’ll work together to get you the best schooltime possible.

We have a special relationship, Boo and I, for I am also unconcerned these days with what’s cool, and we rock and sing and love together.

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(I think he knows his mama is a little nuts).

Which brings me to my great winter experiment, by which I use neither heat nor lights.  I think I should start a new blog (or maybe a heading under this one) where I discuss things not Jonah-related.  So if you see a new tab up on my main page, that’s why.  If I had all day to write I would make five or six separate blogs about all kinds of things….

So anyway, for today I’ll just keep it here.  I have turned my heat up to 55, having been warned that it’s the lowest temperature at which I can set the thermostat to keep my pipes from freezing.  To be honest, though it is growing colder, I am used to it somewhat and I think I’ll be able to stick it out through the winter.

And I have added further restrictions to my self-imposed experimental wintertime lifestyle: I unplug nearly everything before going to bed or when going out.  I limit my use of paper towels;  if it can be done with a dishcloth, I use that instead.  I take hot showers less often (2-3 times a week instead of once a day) and set my washer on cold water.  No more using the dishwasher.  I’m selling my movies, books, cds on amazon and e-bay in favor of going to the library. (My precious books are the hardest things with which to part).  I get 10 minutes of space heater time during which I get dressed in front of it.

I’ve even caught some media attention from doing this, while trying to get press for Modest Needs.  Once they find out I’m living like this, that becomes the big story – which is fine with me.  At least I get them to mention Modest Needs as an organization helping people stay self-sufficient.  If my “strange & kooky” lifestyle helps that along — by selling papers or getting people to watch TV, I care not.  It all feels quite normal to me, this austere lifestyle I’ve chosen.  It’s not for nothing that Laura Ingalls Wilder & Dick Proenneke are my heroes.  Anyway I should be in the January issue of 518 magazine and also the Bethlehem Spotlight newspaper, thus far.

Call my crazy.  I don’t mind.  This kind of crazy doesn’t hurt anyone and helps me prioritize, to stay mindful of what really matters.

3 of us

My precious boy and me, with grandma watching o’er in the background.  (I’d include more pictures of Andy but he doesn’t like it).

Over and out for now, peeps.  Time to work. And on Friday, courtesy of Tim, I am flying out to Indiana to see him and the Quarryland Men’s Chorus perform an off-book (memorized) intense holiday concert.  My Tim has a solo and one of the best voices in the choir.

How proud am I?

happy couple locks of love

“They love each other…”

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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:

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jonah battles daddy with a purple "noodle"

the pool - his favorite place

the pool – his favorite place

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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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On Tuesday morning, I set out with something like hope to meet Jonah and the two caregivers who’d driven him up for his glaucoma doctor appointment.  Jonah hadn’t seen one of the caregivers, J, in a long time.  J and Jonah have a special bond, and I’m sure Jonah was thrilled when he first saw him.  I love watching them together: a big brother and his little pal.

Jonah was so good while we waited in the hall.  He amused himself, turning circles, humming, making random noises, occasionally approaching J or P or me to touch us lightly or lean in for a hug.   Of course I’d come prepared with bubbles, octopus, peanut butter crackers, strawberry seltzer, and peppermint tic-tacs.  He was as quiet as an NT kid.  Probably quieter, for a few minutes anyway.

He even sat down nicely in the waiting room chair (for a few minutes)   :-)

He even sat down nicely in the waiting room chair for a while

…shortly thereafter deciding to chillax into “punk ass” pose:

I love the punk-ass pose...almost always accompanied by the thumb-suck, making it even funnier

I love the punk-ass pose…almost always accompanied by the thumb-suck, making it even funnier

Jonah was great for the eye test too, but the glaucoma doctor seemed to underestimate and overestimate my son’s cognitive abilities.  What I mean by that is:

Doc wants to assess Jonah’s left eye only so he covers the right eye and puts the Big-Ass-E up on the screen.  Boo probably can’t see a thing but he’s also no dummy.  He’s been to dozens of eye appointments, and he knows damn well the first letter they ask him to read is always E.  Sure enough, when the doc puts that giant E on the screen and asks Jonah what letter he sees, “E,” Jonah announces confidently.  I tell the doc that Jonah knows the first letter is always E.  So the doc shows him the second line:  A  L  O.

Not missing a beat, Jonah tells him “E F G.”  He has no idea, but has E F G is the standard answer he uses at such times.

The doc sighs and shuffles through some drawers; he finds a card with the letter E on it, and I wonder how this will help since we’ve already determined Jonah will answer “E” to just about anything asked of him.  Jonah watches as the doc holds the card up and then turns it to the right, so now it looks like a boxy M.

boxy m

“Jonah, which way is the E pointing?”   Jonah says nothing, so the doc’s next idea is to ask the same question using more difficult terminology.

“Jonah, which way are the E’s tines pointing – up, down, right, or left?’

E F G,” says Jonah.

“The tines,” the doc tries again.  He may ask well ask Jonah for the square root of 3,481*.

“I wish I had my alphabet cards,” I say.  This is a good glaucoma doctor, awards all over his wall, but he never seems to remember (or doesn’t understand) Boo — and by now he’s seen him in the office probably a dozen times.  Maybe it’s just that I’m too close to it all, and to Jonah — whose language, largely unspoken, I understand.

Finally, the doc holds up five fingers and asks Jonah how many.  When Jonah answers “two,” I think we all know there isn’t much sight in the left eye. 

The good news, though, is that the doc told us Jonah could have some of his sight restored after the blood cell clouding dissipates.  It just remains to be seen (no pun intended).  He was concerned, though, about a surprisingly low pressure read in the left eye.   He wanted Jonah to get an ultrasound at the other (retina) doc next door, right away.  He called to tell them we were coming — and we braced ourselves for the dire possibilities inherent in this plan.

But Jonah surprised us, happily amenable to “doctor number two.”

He actually sat patiently through two eye exams with two different doctors within 40 minutes of one another:

doctor number one

doctor number one
doctor number two

doctor number two

After the ultrasound, doctor number two said he liked what he saw of Jonah’s eye, and that his right eye looks just fine.

It was a wonderful day.  I suppose it’s a little strange that some of my best and happiest interactions with my son are at doctor appointments, but then both the good and bad can happen anywhere – so perhaps it isn’t strange at all.

Yesterday (in the ongoing heat and humidity that will surely mark this summer of 2013) my mom and I drove down to another wonderful day with Boo.

Good day, sir!

Good day, sir!

While Jonah took his beloved bath, we (meaning mostly me) recited his favorite scene near the tail-end of the 1971 film “Willy Wonka and the Chocolate Factory,” eliciting great smiles and giggling  from Boo.  GOOD DAY, SIR!   I love to hear him laugh.

There was only one incident during car ride to transfer station and I managed to capture it in photos from beginning to end.  No one was harmed during this incident, which was mighty nice.

Still relatively happy

Still relatively happy

We think he didn't like the volume of the song (probably not loud enough for his taste) or the commercial break, or his dislike of the song itself, though it remained a mystery why it made him so desperately upset and sad.

We think he didn’t like the volume of the song (probably not loud enough for his taste) or the commercial break, or his dislike of the song itself, though it remained a mystery why it made him so desperately upset and sad.

Andy's pulling over now.  Jonah is almost on the floor, kicking his legs up the front and beginning to cry.

Andy’s pulling over now. Jonah is almost on the floor, kicking his legs up into the front seat and beginning to cry.

After being bear-hugged and comforted by daddy, Jonah resumes his punk-ass pose.

After being bear-hugged and comforted by daddy, Jonah resumes a punk-ass pose.

This time when mom and I drove back to Albany it was with a light heart, and to my lovely musical selection: Guster Live Acoustic.

He has had a good many days in a row, sweet Boo.  And he gifted me with many hugs and kisses on Saturday, to last me ’til I see him next, on Wednesday, at the same two doctors in a row (this time planned that way).

I am grateful indeed.  Thanks especially to J and P, who as always were a huge help and support.

How I do love my amazing little boy.

* 59

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Andy told me Jonah has a new aversion – to strands of hair.  If a stray hair is on his shirt, he will pluck it off carefully, drop it (or hand it to you) and say “bye bye hair.”  I love these little utterances, how he weaves what language he possesses, making bridges to the concepts he wants to express.

It usually becomes quickly apparent to us what he’s trying to get across.  Sometimes I wonder if his whole aggression is frustration-based.  He’s probably much smarter than his limited language might lead one to believe.  So does this mean there is a short in one of the language-learning wires in his brain?  That he’d like to tell us that what he loves and what he would like to do is something which has never even been offered to him?  I have no idea, of course.

If Andy hadn’t informed me of this new Jonah tidbit, I have to admit I’d have been very confused when, on Saturday, Jonah handed me the drink I’d just poured him, announcing “bye bye hair.”   Even with the knowledge I now own regarding Jonah’s newfound antipathy, the scene left me confused.  Juice.  Hair.  No connection.

Helpless, I turned to Andy.  “There’s probably a hair on the cup,” he said, and sure enough there was.  Andy managed to slide the hair off where condensation had glued it to the side, and he handed the drink back to Boo.

I guess Jonah has been happy enough, swimming on the campus with surprising tolerance at having to wear a life vest (which prevents him from diving or swimming underwater – two of his favorite pool activities).  He starts a 6-week summer school program on Tuesday, and then he’ll have a few weeks more of summer vacation before school starts again.

My mom chose to stay behind as Andy and Jonah and I drove to the “transfer station.”  It is tiring to drive around more after you’ve just driven an hour and a half and you know you’ve got another hour and a half to travel home.  Plus she wanted me to sign her into my Facebook account so she could see baby pictures of the newest member of our extended family.  The computer is a foreign concept to her, and admittedly I have less patience with her than I should.  “Just scroll down!  Point and click on the name, ma.  The name.”  Of course she doesn’t know what scroll down means, let alone point and click, nor can she execute these pre-school level Internet commands.  I left her after a very basic tutorial.

And what a God-awful hot day.  Neither heat nor cold seems to bother Andy all that much (and bothers Jonah, seemingly, not at all).  Andy didn’t even have his air conditioning window unit installed in the apartment; I have no idea how he sleeps in the humid, cicada-ridden, sticky air.  And so the three of us got in the car and drove away with Andy’s boxes of recyclables, Jonah happy and calm, requesting “music on?” and rocking his body back and forth to the likes of Jay Z and Rhianna.

he likes the big pillow I got for the back of the car

He likes the big pillow I got for the back of the car.

And yes, he still has to wear the eye shield.  By now he may be almost resigned to its presence.  He’s got an appointment with the glaucoma doctor on Tuesday, so hopefully we’ll know more then about how much sight, if any, he’s got remaining in his left eye.

Seeming happy kid...

Seemingly happy kid…

…but deceptively so, because on our return ride back to the apartment, we are just riding along when I am suddenly in pain, slammed against the back of the seat like some Mafia move where the backseat passenger quickly throws a cord over his victim’s head and pulls back hard: execution by strangulation.  But I’m not being strangled; Jonah has grabbed a chunk of my hair and is yanking it hard.  “Ah!  Ah!” I yell.  Andy always tells me to say “pull over” if something like this happens but I almost never do/can.  It’s all spontaneous and uncontrollable, whether I shout “Ow!” or simply “Andy!!!!!”

I press into the back of the seat, my head firmly against the rest (he’s gotten me from the space between the headrest and the seat). I manage to work my arm above my head to press the hair against my scalp, since there are a few inches between his grasp on the hair and my head.  It takes the usual 2-3 minutes (though it feels much longer) for Andy to disengage Jonah’s tightly grasped fists from the chunk of my hair, and I immediately get out of the car, my hand still pressed against my head and half expecting it to come away with a whole long lock of my hair.  Instead I got a bunch of tangled strands, and more strands were all over the car (and likely all over Jonah).

Bye-bye hair indeed.

When I got back in the car I pulled the seat as far forward as possible, leaning right on the dash.  We made it to the apartment without further incident, though shortly thereafter mom and I decided to leave because he came after me again.  This time I recoiled back quickly, told my son “bye, sweetheart,” and walked out the door.

My mother played one of her favorite CDs on the way back:  John Williams conducts the Boston Pops with rousing renditions of such patriotic gems as “America the Beautiful” and  “The Battle Hymn of the Republic,” made surreal by the events of the scant time we’d just spent in Rhinebeck.

“I have seen Him in the watch-fires of a hundred circling camps,
They have builded Him an altar in the evening dews and damps;
I can read His righteous sentence by the dim and flaring lamps:
His day is marching on.”
~ Julia Ward Howe

Last night I called to see how Jonah’s day had been after Andy had brought him back to his residence.  Usually Andy calls, but I took a turn.  One of his caregivers told me he was calm and happy for the remainder of the day, having requested (and eaten) a grilled cheese sandwich and then showered and gone to sleep earlier than usual.

For some reason, after I hung up the phone I went deep into my head, calling forth these realities as though they were fresh and razor-sharp instead of the dulled, standard emotions they have come to elicit.  For a few minutes, I was in anxiety-attack mode, feeling as though I’d just dropped him off at the school to live, unreal realizations hitting me in waves of panic and nausea.  Someone else is telling me how my child was today.  Someone else has prepared his food, guided his daily activities, put him to bed.  Someone else.  Other people, far away.

How did this come to be?  How did I come to be okay with it?  Is it just that I had no choice, lest I go mad?

I am glad the floodgates of my angst were dammed again soon, that my mind-storm did not last.  I breathed my way slowly back to the commonplace lethargy of acceptance of our reality, and then I slipped further away – into the cushion of sleep.

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“The “D” is silent.”  ~ Django, in the 2012 movie Django Unchained.

So I just saw Django Unchained, finally, and enjoyed it so much I watched it twice.  I can’t believe it lost to Argo for the Oscar, which I also saw but thought was a good (but lesser) movie.  I’m not a huge Tarantino fan and am glad I went into it without the knowledge that he had written and directed it, because I would have been somewhat prejudiced against it from the start, though it should have been obvious he directed it: the violence, the structure, and all that ignoring of plot holes and logic.  It didn’t matter.  I didn’t even mind the violence…it served a purpose, and as far as folks criticizing the word “nigger” being overused, it was set, after all, in the antebellum era before the Civil War.  It was true to its time, for the most part.  I loved it.  Perfectly cast, too.

Djonah has also acted in an unchained manner of late – he even “eloped” (which is the autism world’s word for running away) on Saturday when my mom and I visited and we were eating lunch at Andy’s apartment.  With no warning he ran at the screen door, flung it open, and ran full speed down the short-ish street right toward the 55-mile-per hour road it meets.  Andy acted lightning fast, and thank God he’s been working out for months now because he caught him easily.  I would hope that with my new exercise regimen and super-power momma instinct, I also could have caught him, but luckily I didn’t have to try.  Left unchecked, Djonah would certainly fly, headlong into the street, I’m sure, powered by an inner need to escape something inside him which would ignore all danger of speeding cars on the road.  This eloping is new; he has only done it once before, and on the school grounds, where he is trapped on all sides by fencing.

There are other new things amiss with Djonah.  He is having multiple aggressions every day (which has always been cyclic) but he has had zero aggressions for something like 2-3 weeks prior to this – and also, now he is exhibiting signs of OCD (obsessive-compulsive disorder) we’ve never seen before, touching doorknobs 100 times and spinning ever-increasingly in circles, round and round.  This is all different. His nurse and his behavioral specialist are both really concerned.  There is also some blood in his left ear; it isn’t pouring out of him but when we gently clean it there is blood on the swab.  I have to call today and see if I can drive down to meet with Djonah’s doc and talk to her about what to do about all these things.  After talking to other moms in similar situations, I think I want to take him off all his anxiety/aggression meds and then put him back on them, one at a time, to see what is working and what isn’t.  Right now he is on such a cocktail of meds that adding and subtracting meds at this point is just a guessing game.

On top of all this his eye operation is a week from tomorrow.  I can’t see that helping any of these behaviors.  Things will almost certainly get worse before they get better.

Also on Saturday, he attacked Andy twice in the apartment.  Andy managed to get him onto blue bed and hold him, and I came in to lay across his legs so he wouldn’t back-kick Andy in the kidneys.  Djonah wept and wept…in frustration, anger, I don’t know what, drool and snot and tears all mixing together in a pool of desperation on the bedspread.  It took a long time to calm him down.  I tried singing softly, shifting my body so my face was near his, and he’d jut his neck out toward me as far as he could and open his mouth, gnashing to bite me.  I recoiled as if facing a cobra.  I kept kissing him, on his legs and feet and back, wherever I could reach safely, telling him softly, over and over, “I love you, Boo.  God loves you.”

Eventually he was able to calm down, breathe normally, and relax his lithe body.   He ate his lunch and took his bath and wanted his car ride.

settled down somewhat

settled down somewhat

People sometimes ask me how he is doing and I never want to talk about it.  I direct them to my blog sometimes, because I can’t live it and talk about it all the time too.  A defense mechanism in my mind kicks in so I can live a life without a constancy of terror and anguish, helplessness and envy.  And yet I have to balance this with the necessity of advocating for our son and ensuring he is getting the care and medication that will help him.

A friend called me last night to vent because her teenage son is being very rebellious.  All I could do was listen.  I know nothing of teenagers but for memories of my own teenage years.  I wish I could have helped her more.  I sent her a list of books he may enjoy, and she may enjoy them too, for they are both readers and in my literature-loving mind, a good book is damn near a cure for anything that ails you.  If nothing else it provides escape.  Here is what I recommended (most of which I have read but some I have not and recommended based on reviews):

Fiction:

Looking for Alaska by John Green

Divergent by Veronica Roth (inspired by The Giver, I’d say)

Matched by Allie Condie

Every Day by David Levithan

I am the Messenger by Markus Zusak

Boy21 by Matthew Quick

Don’t Care High by Gordon Korman

The Chocolate War (and its sequel) by Robert Cormier (all his books are great)

The Curious Incident of the Dog in the Night-time by Mark Haddon

Brave New World by Aldous Huxley

Non-fiction:

Me Talk Pretty One Day by David Sedaris (really funny)

Life Without Limits by Nick Vujicic

One Man’s Wilderness: An Alaskan Odyssey by Dick Proenneke and Sam Keith

Black Like Me by John Howard Griffin

The Wave by Todd Strasser

A Heartbreaking Work of Staggering Genius by Dave Eggers

Books always help me.  Writing always helps me.  Both are ways to immerse myself so completely that I’m in a zone from which I cannot be awoken easily.  They are meditations. 

I pray and hope and will Djonah to get better, for all of this to subside, for the wheel to turn so he is not squashed at the bottom but rather riding on top – happy in the warm weather – and soon, swimming again.

But there are good things on the horizon as well.  My mind is feeling calmer, and happier –and the changes I’ve made in diet, behavior, exercise, and what I put into my body in general have given me more energy and a better perspective on everything I see and all I encounter.

In the midst of the Djonah turmoil, somehow, I am feeling very, very blessed and grateful.

Auf Wiedersehen…

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Andy and I are talking, making decisions, struggling to do what is best and right for Boo.  I know everything will be okay.

He drove Jonah up this afternoon to visit my mom and me at her house.  Jonah’s got the week off from school, and they’re coming up to grandma’s house for Easter Sunday too, so I get to see Boo twice this week.

When I first arrived, Jonah and Andy were already there.  At one point Jonah opened the fridge, peered inside, and reached for a bottle of soda.  Root beer? he said, placing the bottle on the counter.  It was indeed a bottle of root beer.  Andy asked how Jonah knew it was root beer.  My mom replied that Jonah knew the look of the bottle.

Then I piped up.  “He can read,” I told them.  (Now I know as well as anyone that he only can read some sight words, but I wanted to see which ones he knew).

I picked up a milk carton and, showing it to Jonah, pointed to the word MILK.  “What does this say, Jonah?”  I asked him.

“Jonah,” he replied with indifference.  Enough people have asked me to look at letters and tell them what I see, I almost hear him say.  Not you, too, mama.  Cut that shit out.

It has been a weird and wonderful day. I was treated to lunch by my lovely cousin-sister D.  She is inspiring and is a genuinely good, positive person, which is rare enough to be precious to me.  She listens as well as talks.  This is a skill, requiring awareness.  She’s better at it than I am.  She’s good at it like few other people I know.  Her spirit is bright and ready for a smart, engaging, adventurous future.  Go D!

Also I was able to talk to a lot of interesting people over the phone at work.  When your job is to be on the phone a lot, you may as well find out about people.  You can brighten their day, maybe, or be the person who listens to their story of how they built a business up from scratch 16 years ago.  You can’t just bullshit your way through caring how somebody’s day is going…that’s transparent, unless you’re genuine.  After all, who can’t see through that pitch when it’s thrown at them?

Now I am home, and comfortable with Jack, Almanzo, M, and Seinfeld.  It’s all I need right now.

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“Learn from yesterday, live for today, hope for tomorrow. The important thing is not to stop questioning.”
~ Albert Einstein

Okay so I promise to not quote any more Nietzsche in rash moments of angst.

I’ve just come to the conclusion that if I want to get to the bottom of my son’s aggressions I’m going to have to do it myself.  Should that have been exceedingly obvious to me a long time ago?  Here I am waiting for the professionals to put all the pieces together.

For years, the schools have tried to chart his behaviors, to associate actions with causes, to figure out why he acts out and when – sometimes, even, he aggresses right after he has just been given a reinforcer (reward) or is in the midst of a preferred activity.  And he’s gotten worse.  And he’s getting older – he’ll be 11 on Thursday.  Now he’s figured out that he has an arsenal of weaponry at hand 24/7: a built-in play-doh factory of crap to sling and smear.  All of this everything that makes no sense HAS to make sense to somebody.  I just have to find this person, these people, the neurologist somewhere who will discover a medical, fix-able reason for all of it.  Or do I?

There has to be a reason. Or does there?  I know autism itself doesn’t really make a lot of sense, but there is usually consistency within its world.  Or is there?  I’m questioning everything I think I know.   I need to figure out where to start, to really start helping my son.  If I can help.

Always I secretly judged the autism parents who flew their kids to doctors all over the country, searching for an answer.  I assumed they wanted to “fix” their child or “cure” them of autism.  Maybe they are just like me.

When Jonah was at a day school for kids with autism, I secretly judged the parents who “shipped their kids off” to residential facilities because they “didn’t feel like” taking care of the child anymore.  Now Jonah is at a residential facility.  And of course before I had a child, I had a million notions of parenting that were better than yours. 

God does hath a sense of humor.

Now I have to do something or go crazy with the merry go round of hope and despair.  I want to help my son.

This past Saturday, Jonah was pretty good:  he only slapped me in the face once with a soapy backhand and, minutes later, got out of the tub and ran dripping to grab at my mother, who was sitting in the kitchen.  No real harm done in either case, and neither incident lasted very long.  Of course, we couldn’t figure out a reason for any of it.  We rarely can.

Here are some pictures from Saturday.  And a video.  I welcome all comments.  Suggestions.  Judgement.  I’m evidently working off some karma.

Jonah and his birthday present Scare-Me-Not, Fearless Fred

Jonah and an early birthday present Scare-Me-Not, Fearless Fred.  Boo will be 11 on March 7th.

I love the top of his hair in this picture!

I love the top of his hair in this picture!

Jonah’s wisdom at the end:  More brownie?

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