Feeds:
Posts
Comments

Archive for October, 2010

red barn?

Posted in autism, behavior, Uncategorized, tagged , , , , on October 9, 2010| 3 Comments »

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

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

Time mystifies me.

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

Jonah got to see two trains.

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

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

My mom bought me a delicious turkey sandwich.

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

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

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

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

swallowed me whole…

~Guster

 

 

Read Full Post »

93.5% sugar free

Posted in autism, behavior, swimming, Uncategorized, tagged , , on October 7, 2010| 4 Comments »

It’s almost funny that my not-so-clever tag-line is “Autism, sans sugar coating,” because I actually do sift a liberal amount of sugar about.  A lot of the events and anecdotes I write about here are moments of cute, silly, Reader’s Digest-quips, between hours of struggle.  Fear. Overwhelming helplessness.  Jonah’s screaming, followed by our collective silence.  It’s been so long since I’ve experienced any life even close to normal.   But this blog is not a diary, and I didn’t come here to complain.

I don’t want to be a self-pitying person.  I try to focus on what is endearing.  But fuck it.  I can’t bring you into my world and then only show one side of it.  I don’t want this to be a happy little vapid blog that doesn’t say much of anything of any use.  I know other families are struggling like this.  They’ve got to be.

I know I am not alone in feeling like my son and I are societal pariahs, and I know other people must look forward to winter too, so they can hibernate in finished basements and empty malls.  At least I believe these things, if I can’t know them.  It makes me feel better to believe them.

Day after day, entry after entry in the dreaded school-to-home log book.. his sweet teacher trying valiantly to euphemize attacks and aggression with happy faces about the 5 minutes of the day when he was actually good.

He missed the school apple-picking field trip this week because he was so bad on the bus.  They took the rest of the class and one teacher went back to the school with him.  This is why I don’t try many outside “normal kid” activities.  Jonah’s not the nice little developmentally disabled boy on the SAFE (Sports Are For Everyone) softball team.  He can’t wait – softball is, almost by definition, waiting – and he’s not interested anyway.

He’s not the kid who will happily play at the birthday party at Jeeper’s.  He’s the kid in the very rear of the building, running up and down concrete steps leading to the emergency exit door.  He’s not even the kid who swims in an organized class, because he wants to get in the water and back out again at will.

He’s not any kid I ever dealt with
or handled
or loved
or feared
or was amazed by
or cuddled
or played with
or was depressed by
like this.

Some days we are worn down to barely functioning humans, Andy and I, trapped in this world we can’t navigate.  There is no barometer, no compass, no captain.  We don’t speak of it much because it always feels like there really isn’t anything to say.

Today Jonah attacked the bus driver, the after-school program coordinator, and Andy.  I got home before Andy and Jonah, and when they came in Andy was driving Jonah before him into his bedroom where he pinned him down on the bed.  I went to an eyeglass store so they could bend Andy’s mangled glasses back into wearable shape; Jonah had twisted the frames in the midst of his kick-hit-scratch-swat fest.  We’re tired.

Did I mention we are tired?

Pulling into the driveway after having Andy’s glasses fixed, I saw a fat rainbow:

and some floral-blooming sunset clouds:

And in the midst of my heart-pounding hand-shaking anxiety, I stopped to take pictures.  I had to.  I bring the camera everywhere.

I have to let all the beauty fill me

at every opportunity.

Read Full Post »

button

Posted in autism, language, tagged , , , on October 5, 2010| 2 Comments »

Narrator: How can he possibly resist the maddening urge to eradicate history at the mere push of a single button?
The beautiful, shiny button?  The jolly, candy-like button?
Will he hold out, folks? Can he hold out?

Stimpy: No I can’t! Yeagh! (presses button)

~ The Ren & Stimpy Show

Another fun ride in Jonah’s amusement park of life is “button.”

“Buh-ih?”  he asks, lazily mushing the consonants.  (He’s a big-time consonant musher).

What he wants, if you will believe me, is to sit on one of the two chairs in the computer room and turn the printer on and off and on again by pushing the big, candy-like button.  This is usually verboten, but once in a while I’ll allow him to press the beloved button five or six times.  I think a large part of the charm for Jonah is the racket of inner mechanisms coming to life and then shuddering to sleep, all accompanied by bright, blinking red & green lights.  I don’t want him to break the thing, of course, but he asks “button?” so sweetly that he’s hard to resist.

He also loves to sit on my lap at the computer and watch videos.  For a long time he begged for “the ocean” and I’d play short videos taken in Cape Cod of him romping in ocean waves.  When he was younger he liked Disney, Wiggles, and other kids’ websites; nowadays I like to play him YouTube music videos by They Might Be Giants and Schoolhouse Rock — but ultimately egotism prevails; his all-time favorite computer activity is to watch himself watch himself on video.  I know that’s confusing but it’s also the truth.  He wants to watch a video in which he watches himself in my dresser mirror while he sings a Guster song.  Of course he doesn’t have an ounce of modesty or self-consciousness about this self-absorption, which is funny to see.

Do I have a young Narcissus on my hands?  He really dug the pool too.  He fell in love with his own reflection in a pool, right?  Maybe I’m onto something.

In 20th century pop culture, I just read on Wikipedia, Bob Dylan’s song “License to Kill” refers indirectly to Narcissus:  Now he worships at an altar of a stagnant pool /And when he sees his reflection, he’s fulfilled. I’ll have to play that one for Jonah.  Maybe he can learn it, watch himself sing it in my dresser mirror as I tape him, then later watch it on video.  Then I could videotape him sitting there, watching that on video.  And then videotape him again as he watches that on video.

Ow.  No.  That hurt my brain.

Read Full Post »

knock knock knock?

Posted in autism, behavior, sensory stuff, Uncategorized on October 3, 2010| 1 Comment »

“Knock knock knock”?  Jonah asks me.

This is not the beginning of a joke, but a request.  He is asking me to knock on his head.  I knock three or four times on spots all over his noggin; he giggles and says “fast!”  So I knock faster, using both hands to create light little rhythms.  Jonah loves to be knocked on the head – what can I say?  Knick knack paddywack.

He also loves other kinds of sensory pressure.   Some folk on the autism spectrum are really sensitive to touch and can’t tolerate certain textures or pressures, but Jonah craves them all.  He wants to cuddle so close that he melts into the shape of you.  He wants tight squeezes and massaging pressure on his shoulders, neck, and back.  He wants to reach out from the backseat of the car and gently place his fingertips on my shoulders, sometimes pulling as if to gather me closer.  Sometimes if he is freaking out in the car, I calm him by pressing my hand on his knee.  (This technique got us from Cape Cod all the way back to Albany when Jonah had such a hard time keeping it together after vacation).

“Huck?  Huck?” he asks every time he’s done something wrong and wants to get back in your good graces.  It’s his unspoken apology, overused and often insincere.  You’re not sorry, you little shit, I think sometimes. You just want  a hug.

Worse is “up up up?” –  meaning he wants me to pick him up and carry him, usually from the car (where he has just flipped out) to the house (which is where he’ll end up, specifically in his room).  But this is where I draw the line.  The kid is eight and a half, for the love of God, and though he’s thin and lanky like his mama, he’s still at least a good 50 pounds and liable to break my back.

So I walk heavily, practically limping, Jonah hanging and clutching onto me; I’ve grown a massive, screaming tumor from my midsection and my mission is to deliver it inside.  It’s like we’re playing that three legged race game at the elementary school Olympics.   So, mushed together in a human blob, we walk as one up the stairs and into the house.

Where he’ll likely ask for a hug – and later, once he’s calmed down, “knock knock knock?”

Read Full Post »

bye bye

Posted in autism, language, tagged , , on October 2, 2010| Leave a Comment »

When Jonah was a baby and toddler, he didn’t wave bye-bye the way other little kids do.  I remember watching these other kids, usually children of Andy’s old friends (a lot of them clustered around Jonah’s age), wondering why Jonah couldn’t do what these kids could.   At one particular birthday party, when a nine-month old waved and said bye-bye to me, I damn near fainted in amazement.  They can do that?

On the other hand, Jonah had his share of unique accomplishments.  He sat wide-eyed with his head up almost immediately after birth and was walking unaided at 8 months old…so it’s not as if, for a short while there, I didn’t have that parental pride of “my kid did something early.”  In fact, Jonah continues to surprise me with new feats every day.  He takes more naturally to water than any kid I’ve ever seen.  He runs like the wind.  And he can hold a tune – pitch and rhythm both very nearly on target.

Still, for the longest time, no bye-bye.  Certainly never spoken, and not gestured either.  It seemed to mean nothing to him.

I don’t recall when he first started with bye bye, but now it’s one of his go-to phrases.  However, instead of embracing its traditional use – to bade someone farewell upon parting – Jonah prefers a less common meaning: please leave now (the please, of course, being optional).

There are many occasions where Jonah will employ the bye bye method of disengaging himself from an annoyance.  The annoyance is usually a person:  me, wanting to five him a bath.  No!  Bye Bye!

His father, asking him if he’s got a poop in his diaper:  Bye Bye!  No!

Children on the playground who, curious about my pebble-hoarding son, stray too close.  Bye Bye!

His teachers undoubtedly hear a lot of bye bye.  And the counter people at McDonald’s.  His babysitters.  The lady who cuts his hair.

Bye-Bye, mama!

I guess he’s making up for all those years he didn’t feel like wrapping his quirky little mind around the concept.

Read Full Post »

« Newer Posts