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chip by crack by piece

October 21, 2010 by The Never Normal

I have been exhausted; too tired to think or type down any thoughts that may have sifted through the sleepiness.

On Tuesday Jonah’s school had a half day, so I had to pick him up at 11:30am.  I dreaded it.  When I arrived he’d already had attack incidents at school but I’d just bought that kick-ass harness contraption so I knew he’d be safe in the car.  It is a sickening, saddening, surreal feeling to be afraid to let your child out of his safety harness for fear he will attack you.  But I was too chicken to have Jonah in the house with me alone.  So I literally drove him around until M met me at 3pm to take him to a doctor appointment I’d made for him (almost all the respite/services/ placements/ programs I’m applying for require a current physical).

After I picked him up from school, at Jonah’s request, we headed to Voorheesville to see the trains.  Here we had the first real test of Jonah’s new safety harness, when for no reason he flipped out and tried to launch himself at me.

It is a weird thing to reach for your camera at a time like this, but I feel so journalistic now that it’s a natural instinct.  You can see that although the harness kept his torso back, his legs were free to kick.  Of course I’d thought to remove his shoes, but bare bony ankles hurt too.  After I took the picture I got the hell out of the car and watched, shaking, as he BAM BAM BAM-ed his foot against the console armrest.  I quit smoking almost 10 years ago but it was a smoke-a-cigarette-and-get-your-shit-together moment if there ever was one.

I’ll be looking into a leg/foot restraint next.  After he kicked himself out of energy, by some miracle of miracles, we saw four trains – two at the same time – and Jonah was once again happy.

Then we visited a drive-thru and went up for a ride through Thatcher Park.  Jonah was calm but I knew it could change at any time, for any reason, and the whole time I’m thinking this is ridiculous.  I can’t live like this, afraid to let my child out of the car until I have help.

Finally M and I took Jonah to the doctor and he was pretty good, though I was kind of a wreck.  After the physical and the shot Jonah needed (which didn’t elicit a freak-out attack, like you’d think it would), M took Jonah to the car and I stayed behind to talk to the doc.  Doc came in, pulled a stool up to me, and said “I’m going to say something that’s going to sound horrible, and I’m sorry. But I think it’s time to investigate respite placement for Jonah.”  He explained that I am not going to be able to handle this, emotionally or physically, and that it wasn’t safe for Jonah or for me, or for my mental health.  So I nodded numbly and got some information from him about who I’d need to talk to, and then I left.  Within hours I had a second opinion from my favorite doctor on the planet, and he told me the same thing.

So I considered it.  I thought about it and I cried over it and I had nightmares of it.  On Wednesday, when M could not be with me, my cousin Brian came down to stay with me and Jonah (and he got to witness a mid-level attack on me, too fast for him to stop, which mangled my glasses yet again and gave me that bonus good ol’ “nose smashed into the brain” sensation) until M could come back to help.  I just have to keep someone with me, all the time.  All the time.

I  keep someone with me

and I remind myself to breathe

and I have crying jags that won’t stop

and I have moments of power and strength

and I keep hoping, and feeling the hope crushed, and hoping again.

and it’s breaking me down, all of this, and chip by crack by piece I have come to the place I am today, where I am investigating temporary overnight respite homes for Jonah….to keep him safe, to keep me safe, to keep me from losing my mind altogether and being of no use to either of us.

I do not have help this weekend.  I had to drive Jonah to school this morning (because I’d forgotten his harness at after-school program the day before and they won’t let him ride the bus without it) and then I realized halfway there I’d also forgotten his book bag with his lunch in it – and then on the way he launched another few attacks at me — kicking, screaming, thrashing — and by the time I got to the school, my nerves were so frazzled that I actually called the school on my cell from the front driveway and cried to them to please send someone out for my son and a social worker out for me.

They came and collected Jonah, and in the social worker’s office I asked her tearfully to please help me find some kind of respite care before the weekend.  Please.  As unimaginable as it is going to be to walk away from a home where my son will be for however long he needs to be there, I need this.  Now.  Please.  So she started leaving messages, and so did I.  My father helped me a lot today; we picked Jonah up from school and took him back to the doc for the results of his tine test and my dad stayed with me until M could come back.  I heard back from the social worker and someone from CPS but only to say they were trying.

I am still waiting.  I have one more day until the weekend; I have to believe they will help me tomorrow.

I’ll call and badger and beg if I have to…

Or I don’t know if I am going to make it.

Posted in autism, behavior, trains, Uncategorized | Tagged , , , | 4 Comments »

we’re all in this together

October 18, 2010 by The Never Normal

Today Jonah had a ‘3-incident’ day but it’s still less than usual and it was at school, thank God and thank Wildwood and thank his teachers, who are equipped with safe rooms and hold techniques and lots of trained, caring folk to cope with my boy.  (I’d be such a poor special ed teacher, crying like a little girl pushed by a bully every time some kid bit me).

And I never thought I’d love a Monday so much.

Today Jonah was very good at after-school program — and hallelujah the 5-point car harness thing I’d ordered for him came in, so I picked it up at lunchtime.  It looked like kind of a complicated contraption; when I got back to the office, I handed it to co-worker/handyman/mechanically inclined S and asked him to put it together for me.  “Did you even try to do it yourself?”  he asked me.  “Well, no,” I responded sheepishly.  “Then go try first, like a big person!” he half-mocked.

So I did.  I installed that hundred-and-fifty-dollar contraption in the car my own self, and walked upstairs all proud, and S asked me “now don’t you feel empowered?”  and yeah, I had to admit, I did feel empowered.  As if some kind of Superwoman emerged from the ashes of a broken, busted-up, scared little girl.  (If you count installing a car harness to be a superpower).

And Jonah acquiesced nicely to being secured in the thing, so we proceeded to go see his beloved train.  He laughed and giggled the whole way — I kept catching my breath and holding it, forgetting to breathe, almost, thinking:  really?  he’s really happy? and it made me so glad to have my boy back – my sweet, humor-filled, loving, fun, precious little kid.

When the train came he clapped and shouted with joy:

…and then we were rewarded with another train, and when we got home Andy’s mom had dropped off a yummy casserole and m m m for Jonah, and my lovely friend K delivered me a delicious apple sage pork chop dinner with mashed potatoes and stuffing, with amazing desert and candy treats besides – even golden chocolate moneycoin (especially for Jonah).  Sometimes I can see how life works, once I decide I am determined to love it again, come hell or high water…how, as Sara Crewe said in A Little Princess, “The worst never quite comes…”

Jonah was good all night.   Another co-worker, B, had kindly given me a little moneycoin bank for Jonah, and the kid played happily on the floor with it, letting out big shrieks of joy (that maybe would have annoyed the crap out of me two months ago but today sounded perfectly awesome).  Then he ate some of his grandma’s casserole, and took a bath, let me help him brush his teeth, and went to bed, all like a very good little angel of a boy.  Whew.  Hooray!  I am grinning ear to ear, almost crying from the amazing wonder of it all.

I ask for help and am getting it.  I push through and am rewarded with days like today.  Thank you, thank you, thank you I tell God in the same mantra of the help me help me help me from the other day.  I appreciate this day.  I appreciate it even if it is only one day of respite.  I appreciate that others are also dealing with awful things and hellish days and long, empty nights.  That I am not alone.

That we are all in this together.

Posted in autism, behavior, trains, Uncategorized | Tagged , , , | 3 Comments »

the cops and the crisis center

October 18, 2010 by The Never Normal

“I caught a piece of the sunshine, put a little hope in me
But after the flood raged, there’s nothing really left to see
But I was not done, or beat, the violence was a source of strength:
Not everything is always just as it seems…”

~ Guster

I gave Jonah his pill right off the bat Sunday morning and warily waited to see what kind of kid the world was going to deal me this day.  Attack number one came early; we were sitting together on the couch watching Thomas the Tank Engine when he turned sideways suddenly and kicked me in the face.  I jumped up to avoid further injury and held him on the couch until he quieted, then we counted down together and he seemed okay.  (I think I’ll have a bit of a shiner though).

I guess I got a little squirrely.  I knew I wouldn’t have help until early afternoon at best and I was tired of being afraid.  I decided that even though the new 5-point harness I ordered for our car didn’t arrive yet, I would secure him in the car seat with the shoulder strap, tight, and lap belt too, and pull the driver’s seat up as far as possible.  I figured he’d be safe and I could just drive him to see the train and wherever else, anywhere else, just to eat up time.  He did get to see the train but he was cranky and seemed really light-sensitive.

He asked: car ride? …so I decided to take a familiar loop through Altamont and back around to Voorheesville.   Very suddenly and without provocation, Jonah unbelted his seat belt (which I thought was too far away for him to reach) and launched himself at me, grabbing a chunk of my hair and my glasses, which went flying.  I can’t see to drive without them, so I pulled over abruptly.  Quite automatically, without much thought or premeditation, I found my glasses, got out of the vehicle, closed the door, walked to the front of the car, pulled my cell phone out, dialed 911, and blubbered out the story of my Lifetime TV movie life to the dispatcher.  I’m afraid to drive, I said.  I’m afraid he’s going to make me go off the road and crash, I cried.

Passing motorists gaped at the sobbing lady on her cell phone.  Soon I was surrounded by three emergency vehicles (I told them no ambulance was needed, thanks anyway) all filled with people who wanted to help me but seemed confused as to where to take us exactly.  The whole time Jonah was in the car and pretty calm.  I thought maybe they’d think I was nuts, he was so calm — I wasn’t sure they’d even believe me — but I had teeth bite marks from yesterday and a brand new puffy cheek to prove I was indeed, I guess, a ‘battered mom’.  Finally they put Jonah, car seat and all, in the back of a cruiser and I followed them to the AMC/CDPC crisis center, where a doctor talked to us briefly and I called my friend M to come and meet us there.  I told the doc I thought I could handle things with M’s help; they fed Jonah another dose of clonodine, a peanut butter and jelly sandwich, chips, and a nuclear-orange colored drink while he watched Toy Story and I rested on a bench, closing my eyes, focusing on breathing.  In, out.  In, out.

“…so take a breath and step into the light….everything will be all right…”

~ Guster

He stayed incident-free once we got home, and my friends P and Mx kindly dropped me off some yummy cider, pie, and black soda.  After I put Jonah on the bus to beautiful, blessed Wildwood School, I’m going to bring the cider and pie to work, heat both of them up, sit at my desk, eat, drink, and smile from the complete respite of it all.

Sweet, wonderful work.  Marvelous Monday.

Bring it on.

Posted in autism, behavior, trains, Uncategorized | Tagged , , , , , , | 6 Comments »

the thing is

October 17, 2010 by The Never Normal

The Thing Is…

by Ellen Bass

…to love life, to love it even
when you have no stomach for it
and everything you’ve held dear
crumbles like burnt paper in your hands,
your throat filled with the silt of it.
When grief sits with you, its tropical heat
thickening the air, heavy as water
more fit for gills than lungs;
when grief weights you like your own flesh
only more of it, an obesity of grief,
you think, How can a body withstand this?
Then you hold life like a face
between your palms, a plain face,
no charming smile, no violet eyes,
and you say, yes, I will take you
I will love you, again.

The thing is how can a body withstand this, indeed?  Can I learn to love this life?  Mary, where did you go?  Why did you impart strength one day only to sap me of it the next?  Is there a God who hears me pleading help me, help me, help me, over and over in the middle of the night like something broken?

The thing is I now don’t care how many people hear me scream and moan and cry.  I don’t care how ugly it all looks to everyone.  I’m sorry, mom.

The thing is I am sapped of energy, of hope.  I can’t do it anymore, I think, and then I do it some more.  I live for the hours between and around and instead of Jonah attacking.  I have bite marks, bruises, hair ripped out, my nose feeling like it’s been smashed into my brain, sore spots all over my body.  Only three times yesterday, he attacked.  Only.  Smashed glass and overturned chairs, cranberry juice dripping from walls.   My tears.  Sobbing.  Shaking.  Trapped.

The thing is it is 6:02am and Jonah is making noise from his room and we are alone and I am afraid of my eight year old son.  I am typing quietly, pressing the keys slowly so he does not hear and stays in bed.

The thing is I am angry.  I am irrationally angry at so many people.  I am angry at everyone who gets to live their lives in peace and calm.  On Monday I will arrive at work and there will be conversation of weekends spent “not doing much” or maybe going to a party, or just watching whatever sports game people deem important and fun right now.  Of dinners and friends, of haunted hay rides and leaf-peeping and apple pie.  Of blessed normalcy.  I am angry because there is no chance of that for me now, not a snowball’s chance in hell of any of it, and I am envious, and sometimes bitter, and I walk among all these people everywhere and even if I share with them some piece of my story nobody who hasn’t lived it has any fucking clue and most don’t care anyway.

The thing is I am resentful.  I am resentful that my husband has left me to pick up the pieces.  I am resentful that Child Protective Services has come to my home and that they took pictures of my son’s bruises and interrogated me about what Andy did, and for how long, and did I know about it, and then lectured me about how it could’ve been just like Jonathan Carey, that he could have killed our son.  Lectured me.  Go up to fucking Saratoga and lecture him, I want to say.  Go away.  I need Adult Protective Services.  Where the fuck are they?

The thing is I know Andy is not violent.  I know CPS is painting a picture of him that is inaccurate, and ugly, and anything I say to the contrary makes it sound like we were in some sort of secret pact to silently abuse our son, and that pisses me off too.  Andy is a good father. When we had decided to separate a few weeks ago I had no compunction at all about leaving him to be the stay-at-home parent in the house with Jonah and me getting an apartment somewhere.  Of course now that is impossible; I am left to work full time and care for Jonah, and it isn’t fair, and I want to scream and throw a tantrum.  I have a whole new appreciation for single parents everywhere, disabled kids or no.

The thing is Andy calls me 2 or 3 times a day and I try not to let him in on how hard it is here because I know he feels guilty and awful and I know he is trapped too, in this depression and in a program where they have to let him out for him to go — and even when they do let him out, they probably won’t let him help me with Jonah, at least not for a while.  But yesterday when he called at 8:30pm I was lying in bed exhausted and empty and I told him about the day.  Just hang in there, he told me.  I’m so sorry.

The thing is I want help and yesterday there was no one to help me.  My parents tried but they saw the attacks — my dad for the first time — and I think it shocked the holy living shit out of him.  It’s one thing to hear me tell of an “attack” and it is something else entirely to witness it.  At least they cleaned up the aftermath for me while I held Jonah.  Other friends and family want to help but I really can’t have people here – it agitates Jonah – I even had to ask my parents to leave yesterday – and I don’t know what help to ask for.   Please leave some deliciously prepared food on my porch?  Please whisk me away from all of this?  Please trade your life for mine, even for just one day?  Please just don’t leave me, even though I am so incredibly bitchy and raving and messy and weeping?   Please care.  Please pray.  Please please please.

My cousin D came over after I texted her in desperation; she was my savior, speaking to my parents, teaching them how to do holds, telling me that if I need it I can and should call a crisis center who can come and help.  She saved (salvaged?) my day.  The thing is even she cannot fix this.

To top it all off my sink is clogged and there is water and food gunk in there and the Drano didn’t work and there is laundry to do and dried spills to clean and another day to get through before I can escape back to the office and the people with their normal lives for me to watch, like I am an child pressing her face against a glass wall looking in at a party I’m not invited to….that I’ll never be invited to…

The thing is I am tired.

I don’t mean in the I want a long nap way, but in a soul-tired torpor fog way that feels like there’s horror mixed in.

The thing is I don’t care anymore how self-pitying or awful this sounds.  I just don’t care anymore.

The thing is I have to believe that I can hold life like a face
between my palms, a plain face,
no charming smile, no violet eyes,
and I can say, yes, I will take you:

I will love you, again.

Posted in autism, behavior, trains | Tagged | 4 Comments »

mother Mary comes to me

October 15, 2010 by The Never Normal

“and in my hour of darkness, she is standing right in front of me…”

~ The Beatles

I feel stronger right now than I have in weeks.  Months.  Maybe even years.  In this ‘hour of darkness’ I am getting things done for myself and for my son, and I am standing upright, and I find I am capable.   Reverting to my Catholic upbringing, I pray to Mary:

Help me, Mary.  You had a difficult son too.  You understand.  Help me please. I feel she has. (I always did like Mary).  Now I know a humility that has given me an unexpected strength,  if that’s not too much of a paradox.

I visited Andy in the hospital today and it was good.  There was no poison or animosity – only sorrow, and shared pain, and real love.  We will always love one another.  There is much yet to get through but I can do this thing.  I can do this.

Jonah did very well yesterday at after school program, so I took him to see the train and we saw one right away, which he (of course) loved.

He behaved at home last evening too, and he was a good little boy this morning.

He even woke up laughing. 

Hey mama!  Hey mama! he called — and echoing his laughter, I went to him and covered him in kisses.

Posted in autism, behavior | Tagged , , , , , | 2 Comments »

on the ocean

October 13, 2010 by The Never Normal

“On the ocean…
I think we’re taking on water…
the storm is on the way,
but I will hold on anyway.”
~ Guster

This is a ridiculously tough post to type, so please forgive any type-os.  I doubt I’ll be editing this one.

I’ve got enough of my mom in me to want to avoid “airing dirty laundry,” as she would put it.  But we’ve reached rock bottom here and I should at least explain why I haven’t been around to post.  Because I just put Jonah to bed and don’t have enough energy to tell the whole tale, I’ll present a Reader’s Digest version of our tumultuous time on the ocean…

This past weekend Jonah had a very rough time behaviorally.  A VERY ROUGH TIME.  On Saturday he threw a toy from the backseat and hit Andy in the head while he was driving.  Andy’s response was way over the top, without a doubt inappropriately so, and I had to take Jonah away from him.  After going back and forth with Andy over the phone – I wanted him to take a break and leave the house for a week or so; at first he refused – Andy decided to check himself in to a hospital.  This was Monday, I guess.  I am so frazzled.  I forget what happened which day.  I don’t know what order things happened in, or how we got here, or how this is became my life.

Jonah continues to be in “random attack mode” and since Monday I have gone into “taking care of business” mode.  I have taken many steps to mitigate the behavior and ensure our financial, emotional and safe survival, including applying for home behavioral support services, getting Jonah on a low dose of clonodine, arranging for a special harness seat on the bus, making a myriad of appointments and phone calls to schools, doctors, agencies, and coordinators to arrange for services so I can still go to work and care for Jonah as well…

…things I took for granted are now huge considerations.  How to go to the grocery store.  How to go to my therapy appointments.  How to sleep.  Eat.  Breathe.  Remain sane.

I’ll go into award-show mode now.  I’ve won nothing but nonetheless am on the podium and have just been called to give credit to those who so deserve it:  I couldn’t have gotten through this weekend without my cousins D and B, who dropped everything to stand by me & get me through this; they’ve helped with Jonah, incurred injury after injury from his attacks, and pulled me up from the waters that threatened to drown me.  My mom has offered her home, also suffered injury at the hands of my out-of-control son, and come to my aid to help even when I am stark raving bitchy.  My dear friend M has stuck by me through so much – rearranged his whole schedule to ensure my safety and ability to cope.  My dad has been very supportive.  My boss has been fantastic.  My friends are caring and there if I need them.  My cousin Brian is ready to jump to help me with whatever I need.  Even the people I supervise at work.  I am grateful.  I am grateful.  I am so incredibly grateful.

This is a trial by fire if there ever was one.  Andy and I had already decided to separate, but I hadn’t said anything just yet; now I may as well tell that too and get it all the major shit over with in one post.

Sorry if all the dirty laundry is stinking to high heaven.  I hope the meds and behavior supports and whatnot serve to bring my sweet boy back.  I hope Andy is getting the care he needs and is okay.  I hope I can keep it together.

If you’re the praying sort, I could use some of that.

We’re staying afloat…

Posted in autism, behavior, Uncategorized | Tagged | 7 Comments »

red barn?

October 9, 2010 by The Never Normal

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

 

 

Posted in autism, behavior, Uncategorized | Tagged , , , , | 3 Comments »

93.5% sugar free

October 7, 2010 by The Never Normal

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.

Posted in autism, behavior, swimming, Uncategorized | Tagged , , | 4 Comments »

button

October 5, 2010 by The Never Normal

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.

Posted in autism, language | Tagged , , , | 2 Comments »

knock knock knock?

October 3, 2010 by The Never Normal

“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?”

Posted in autism, behavior, sensory stuff, Uncategorized | 1 Comment »

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