Archive for June, 2011

i like

“I walk the streets of Japan till I get lost
Cause it doesn’t remind me of anything

With a graveyard tan carrying a cross
Cause it doesn’t remind me of anything

I like studying faces in a parking lot
Cause it doesn’t remind me of anything

I like driving backwards in the fog
Cause it doesn’t remind me of anything…”

Doesn’t Remind Me by Audioslave

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I was happy to hear on Saturday morning that Governor Cuomo signed the same-sex marriage bill into law.   2011 is ashamedly late for this to be happening, but at least it finally is here.  Equality and inclusion.  As one comedian said, “Gay people should have the right to be miserable, too.”

So in the afternoon, D came to help me watch Jonah for a while, and we rode him around,  meandering all over God’s creation – past ominous black cloud masses, through driving rain as amazing & short-lived as the taste of Fruit Stripe gum,  finally stopping at one of the Albany Airport’s car turn-offs where you can watch the planes take off and land.  There we saw a huge rainbow in the sky –  D took this pic with her phone and e-mailed it to me; of course it looked so much prettier and vibrant in person…

A rainbow the very first day of same-sex marriage equality in New York State!  God’s nod, I said.  D liked that and posted it on facebook.

Of course we stayed just a little too long for Jonah’s liking and so he started unbuckling all of his harness fasteners, the sound a now-familiar harbinger to his freak outs – this one ending with D and Jonah on the grass outside the car.  Safe hands and body was our mantra, D handling Jonah in the calm, seemingly unfazed manner only one with the expertise of working with these kids can pull off…me standing back, arms folded nervously, not sure what to do – a disempowered, frightened mom.   I got it together quickly enough and was grateful it was D who was with me.  She doesn’t call me on my mental state or make me feel bad about its weakness.   She’s supportive and silent, and so we all just move on down the road.  Sometimes she is my sister and sometimes she is my savior.

I should be used to Jonah’s attacking, but whether it is M or Andy or D in the car with me, when Jonah flips out I go unwillingly to a place inside my head that feels like a little girl place – scared out of my mind, horrified at my child intending to do me and others harm.  I go right into verge-of-tears helpless-mom mode.

Meanwhile Andy walks around with wrists (on both sides) slashed with scratches, making him look like he’d recently, half-halfheartedly, continually attempted suicide with a weak grasp on a plastic knife.


Daddy?  Huck?  Jonah will say, meekly and sweet, followed once with both skinny little arms wrapping around Andy’s neck, gently and loving -& minutes later those same skinny little arms shooting out to grab/bend/throw daddy’s glasses with one hand and scratch blindly with the other.  That kind of pendulum-swing can mess with a person’s head after a while.  If I feel like I’ve lost it, what must Andy feel?

Then, at times Jonah is pensive, listening, almost Buddha-like in his own little zen way.

When D and I were driving Jonah home after leaving the airport, once in a while he’d sing little snatches of Cake, or Guster, or Paul Simon songs, in tune and perfect rhythm — and D and I would look at each other and say awwww.  He is first a child-demon and next an engaging angel.

By Monday or Tuesday we should know Anderson’s answer. Andy and I are leaving at 6am Tuesday morning to take Jonah to Children’s Hospital in Boston, where he’ll see a pediatric rheumatologist.  I don’t know how in hell we’re going to make it to Boston and back safely, let alone out of the car and into the hospital itself.

As Brett on Match Game would say: Good gravy.   As I would say: shit.

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I used my lunch hour early today and met my mom and aunt T at Wildwood for Jonah’s “moving up” ceremony, which in his case takes on another meaning, as he is also “moving out.”   We sat there amid the mild noise and semi-chaos of a room full of kids with autism, me wondering if they’d get Jonah up on the stage at all.  He wasn’t in the room – they had him out in the hallway and were pulling him around on the scooter.  Three classes “moved up,” his being the last.

The first class was seated on the stage, each child waiting for his or her turn – a miracle, in my estimation.  The teacher handed each child a certificate honoring some particular accomplishment or progress achieved over the course of the year, and announced the gains each child had made.

The next two classes needed aides to guide the kids onto the stage, the crowd chuckling as some kids hurdled the stage instead of walking up the steps.  One cute boy I know bowed deep and got some laughs.  Jonah was the second in his class to be announced.  At first it was like that scene in “The Sound of Music” where they announce the Von Trapp family and everyone applauds, but the Von Trapp family has fled and never appears.  Then they evidently halted his scooter just outside the door and he was escorted in by two or three assistant teachers, who ushered him up the stairs and then snuck him off backstage.

I don’t even recall what they recognized him for.  Best biter?  Champion shit-smearer?

At least he was wearing the Guster shirt I bought him.

Later, back at work, I was melancholy and silent about the whole thing, but then my co-worker, K, came in to ask me how the graduation went.  “It’s more of a moving up ceremony,” I explained.  K’s in a band and I knew what would happen next:  we broke into a spontaneous rendition of the theme song to The Jeffersons:

Well we’re movin on up,
To the east side.
To a deeee-luxe apartment in the sky.
Movin on up,
To the east side.
We finally got a piece of the pie!

Fish don’t fry in the kitchen;
Beans don’t burn on the grill.
Took a whole lotta tryin’,
Just to get up that hill.

Now we’re up in the big leagues,
Gettin’ our turn at bat.
As long as we live, it’s you and me baby,
There ain’t nothin wrong with that…

No, there ain’t nothin’ wrong with that.

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Jonah calls my father “Pa.”  My dad called his grandfather pa, so it’s a tradition passed on.

For Father’s Day, my dad and I went to 9am Mass at the church I used to work for, then out to breakfast and to place silk flowers on his dad’s, his grandfather’s, my grandfather’s, and some other family member’s graves.  My dad wants to tell me their stories, share the history of the Wink family.  I’d like to compile it all into a book with pictures and anecdotes and all the tales he’d love to tell – if only to have it all in writing, to pass down to the younger generations.

I know it freaks him out to see his name and birth date next to his mother’s, but he said he didn’t want her to be alone, and his dad is buried in a different place:

I put small red flowers on my other grandfather’s grave, because they reminded me of how I always called him “poppy:”

I’m not a big ‘cemetery frequenter’ but they are good for reminding me to remember, to keep people alive in my memory.

The next day my dad e-mailed me to tell me what a good Father’s Day he’d had, and how much it meant to him.  It meant a lot to me, too – but my day wasn’t over yet.  M did not get to have his children with him for Father’s Day, so he helped me watch Jonah to give Andy a few hours’ break.  We mostly drove him around.  He was pretty good for us, we saw a train or two, let him direct our path – and request different music:  clapping song?  he asks, meaning Cake’s album, Comfort Eagle, 

  • although he’ll listen to the whole CD, what he really means by clapping song is song #2, a song called Meanwhile Rick James which, without printing up the lyrics, appears to be a song about chicks doing lines of coke in the bathroom at a party while Rick James “takes her nude, and there’s nothing I can do.”   It’s not Sesame Street we’re jamming out to, but all Jonah knows is it has lots of these clapping sounds throughout, and he loves that.

Then we go to see red barn in Guilderland, go up up up to Berne, all around Thatcher Park and Warner Lake, and finally go home, back to daddy and take bath.

It has been another difficult few days since then, mentally, for me.  The fact that in less than a week I will know if and when he will be accepted into the Anderson Center for Autism, the fact that if they can take him it will likely be very soon, and the question marks of how the direct care staff, at any facility, will treat him.  I fully intend to somehow augment their undoubtedly meager salaries, because they do the really hard stuff – they get kicked, beat, hit, scratched, puked on.  They clean shit off the walls.  There isn’t much of a break from it.  I am so grateful for dedicated people who work in this capacity with these disabled individuals.  If I were rich I would donate a few million dollars and demand that it be allocated to staff salaries.

I lost it so ridiculously this morning about the impending surrender of our son, and a whole lot more I don’t want to write about – intense anger directed at me by more than one person, a surreal feeling of floating above this whole situation, the terror of the very real possibility of my inability to come out the other side…that it was very hard to “keep it together” at work.

I bounce back every time, though.  Seeing the graves reminded me to embrace the good, even if I have to draw it from my past for a while – my sweet, cuddle-boo…

…for soon enough it will all be gone — for all of us — all the fear, the worry, the joy and pain, all of it gone.

Unlike Trix, death is for everyone!

– – –

“Live in the now!’  ~Garth, Wayne’s World

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speech leaper

I have Father’s Day things to say but they’re too fresh in my mind and the writer in me can’t string them all together just yet.  So I’ll go back to yesterday, when D and I took Jonah to the falls and he got to walk around in the water for the first time this year.  He’d said “bye bye D” a few times on the ride there, but we’d thought nothing of it because he’s always saying bye-bye to the passenger…bye-bye daddybye-bye-M

But on the ride home he said, and I quote:  “bye-bye mamaand D, too!”

It was the first time I’d ever heard him use the word “too” like that – or complete a sentence with any kind of qualifier.  D and I looked at each other in shock, laughing and exclaiming over this new speech-leap.  It was pretty cool.  Joy prevailed!

All this over your 9 year old boy speaking something that’s not just a piece of a phrase.  He used the word “too” in a sentence.  He’s learning, my precious little boo — slowly, and in spite of whatever it is that’s making him violent, but he’s learning, damnit.

You never dream this could ever be your life, and then it is, and then you can’t dream it not being your life.

You don’t know what to dream.  Every day is a circle of hope and exhaustion, anxiety and happy surprises…laughter and sudden lapses back to despair.  There is only now, to celebrate or suffer.

Yesterday D and I celebrated together, and Jonah chimed in grinning ear-to-ear from the back seat: Is so funny!  is so funny!

Yes, my boo, it sure is.

Right now, anyway.

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Today’s the day the Anderson Center for Autism is coming to Wildwood to evaluate and observe Jonah.  In a few days or so we should know (a) whether they’ll take him and (b) when they’ll take him.  Then, maybe, we’ll have three residential schools from which to choose. 

Today is also “fun day” at Wildwood, but Andy has to pick him up as soon as the Anderson people leave because Jonah’s not allowed to participate in the fun day activites; he’s too violent.

While I understand their decision, it upsets me that my little boo can’t enjoy whatever the other kids get to participate in…plus it makes Andy’s unpredictable day with Jonah that much longer.  The irony is that Jonah had a very good day yesterday at school, with barely an aggression to speak of.

No fun day for you!

The blessing is that Jonah likely won’t care.  A car ride, a bath, grandma, and some peanut butter roll will, perhaps, suit him just fine.  I hope.

But it makes me sad all the same.

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“Sometimes I’ll be walking down the street and I’ll be thinking:
Am I crazy, or is this some morbid little lie?
Further to fly…

A recent loss of memory; a shadow in the family…
The baby waves bye-bye

I’m trying
I’m flying

There may come a time when I will lose you; lose you as I lose my sight
Days falling backward into velvet night

The open palm of desire
The Rose of Jericho
Soil as soft as summer
The strength to let you go…”

~ Paul Simon, Further to Fly

– – –

I am getting sick.  I sound like Peter Brady with his changing voice.

It’s a good day to post some pictures, before M & I go take Jonah Russ for a while.

On a business trip to Long Island this past Wednesday and Thursday:

Long Island is pretty, and I liked the people I met there…but it was also very hot…

And it is always good to return home.  Today I hope Jonah is a happy boy.  Whatever happens, I know we all have further to fly.  Like Paul Simon says:  I’m trying; I’m flying…

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So it’s Thursday June 9th and I’m on a next-day deadline to submit my monthly column in the Capital District Parent Pages (though I’ve had a whole month to write it).

I’m sitting there thinking how strange it is that I write a column about a boy with autism who has become so violent we are planning to take him to live in a residential facility, and how the column is smack dab in the middle of a magazine featuring witty anecdotal tales of family life, articles about events, pages filled with fun places to take the kids, seasonal recipes, ideas for birthdays, and other parenting goings-on.  Sometimes I wonder why they even let me write the column.  I’m the bummer of the issue.  Hands-down.

And I’m thinking I don’t want to be the bummer of the issue this time (for the July issue).  So I sit there, and I sit there, but I don’t know what to write.

I haven’t even written here for a week.  How many times, after all, can you say the same thing with only the slightest of variations before you start to sound like a broken record?

It hits me that I could look backward, and so I write about times when he was a baby.

The words come quickly – it doesn’t take me long to finish.  They’re easier words because they are about the short span of time in which I had the same parenting experience everyone else had, more or less.

It’s not that Jonah has autism.   It would be fine, really, if only he didn’t get so enraged so quickly – become so unimaginably angry, so inexplicably aggressive.  Sometimes I feel as if I have done nothing for 41 years except bring a child into the world who is hell-bent on hurting others.  I almost can’t stand it.  I don’t want to stand it.  I want to stamp my feet like a small child and scream.

When I lean in to kiss him, more often then not I get scratched or grabbed by his whole hand on my face.

Einstein supposedly said that one definition of insanity is doing the same thing over and over and expecting different results.   Some think he himself had some form of autism, but whatever the case, I still will lean in for the kiss.  It’s not that I’m expecting a different result.  It’s that I need a different result – and if I can get his sweet little kiss one time out of five, it is worth the other times.  I just want to be his mommy.

I don’t know my son anymore at all.  I don’t know why he hurts me (or Andy, or his teachers, or anyone).  I don’t know how Andy is staying afloat.  I don’t know how one or both of us is not back in Four Winds.  I’m no good at this.  I’m weak, depressed, and always, always afraid.  And there we go, folks, the record’s skipping – – you’ve heard it all – heard it all – heard it all before.

And so you see there is very little I can say these days.  I apologize if you have tried to reach me and I don’t write/call back, or you invite me somewhere and I say I can’t go.  It’s not like I have a great excuse except I just don’t want to talk about anything to anyone right now.  And I’m sorry for it.

I am not strong enough to leave it all behind me whenever life calls for socially acceptable behavior.  I know so many strong, determined, one-day-at-a-time parents in worse situations who operate on such a higher wavelength than me – who don’t bitch, or complain, or let on to anyone that there is anything amiss at all.

That’s not me.  I never was the sturdy one.  I’m the cry-baby.  I’m the one who crumbles.

And thus concludes today’s whimpering.

“Dorothy moves to click her ruby shoes
Right in tune with the dark side of the moon.
Someone, someone could tell me where I belong;
Be calm, be brave, it’ll be okay…”

~Guster, Come Downstairs & Say Hello

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My cousin D, her manpiece R, and I all took Jonah for a while late this afternoon – and Jonah was 90% fine.  I mean to tell you he was play-on-the-playground, leave-the-other-children-alone, sing-and-smile, cute-chattery fine.

Jonah’s made a liar out of me, especially since R’s seen Jonah only three or four times now and Jonah’s been pretty calm every time, directly contradicting almost everything I write here.  I’m more than happy to be this kind of liar.

I love happy Jonah.  I adore when he is gleeful and silly and playful, even though it’s rare and impossible to predict.  I’m grateful for today’s glimpse of the boy I know is in there – our sweet, beautiful boy.

Thanks, D & R.  You brought out the best in my day – and Jonah’s too.

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This is the part of the story where Jonah falls overboard and is swallowed by the whale.

There isn’t much to say except that it has gotten worse, and worse again, and worse some more – today sucked blah blah blah and I’m so sad blah blah blah.  I don’t know how anyone can stand to read this blog anymore at all.

Jonah’s almost guaranteed to attempt to seriously hurt his father, me, anyone around him – not once, but several times a day, wreaking a path of destruction behind him – lampshades crumbled, Andy’s now duct-taped fan knocked over, eyeglasses scratched, coffeemaker smashed & broken, dinner swept off the table to spray-bomb the kitchen in one swipe:


On the pictured occasion Andy had called me for help.  “I can’t leave him for two seconds,” he told me.

So I came over and cleaned the kitchen (after taking this picture).  I picked up the obviously just-delivered rice, chicken, sauces, and dumplings, wet-swiffered the floor, and vacuumed the landing rug/steps… my heart pounding, my mind processing the scene, adding all these details to the new normal, a new ramped-up constancy of Jonah’s violent aggressing.

After I had cleaned, we sat together on Jonah’s floor for a few minutes while Jonah sat on his bed, having been banished there after the kitchen scene.  I asked Andy if he wanted me to go get him more food.  “No,” he replied flatly. “I ate.”  (which I knew was likely a lie).

“They’ll help him at whatever place he goes to,” I told Andy quietly.  “He’s going to get better.”

“You think so?” he asked wearily.  “I think he’s just broken,” he mumbled, lowering his head into his scratched-up hands, running his scratched-up hands through his rumpled hair.  Andy sits with his head in his hands a lot.   I’m usually in tears.

During some car rides the three of us have taken since then, Jonah’s managed to escape his harness in seconds, throwing himself up into the front seat to grab a handful of hair, scratching, hitting, and kicking whatever body part of ours he can reach.  Luckily we are usually already pulled over waiting for train, or I have been able to pull over quickly so Andy (or M, when he and I are the ones driving him) can climb in the back and hold down a fiercely struggling Jonah who is head-butting hard, kicking hard, hitting hard.  Scratching to wound, to make you bleed.  No holds barred.  No empathy.

It is more frightening than anything I’ve ever encountered because I have no idea how to fix it, how to help him, how to pull us all up and out of this.  No wonder I watch Match Game and bead necklaces when I am not watching Jonah.  I need mindless 70s television, ritualistic bead-stringing, care-package construction, and Guster-blasting.  Andy is writing, which is good.  At least there is a fantastical creative outlet for him too, though I’m sure he squeezes it in in two-minute intervals if Jonah is home.

At school there are days when Jonah aggresses and then, as encore, smears his poop on the safe room wall – and he often aggresses 9-10 a day (each of which consists of an episode of a dozen or so of clustered individual attacks, they tell us).

I’ve said this before but it bears repeating that we are really, really grateful for Wildwood, whose teachers, social workers, and other staff have continued without fail to support our family and somehow manage Jonah day after day, week after month.  I am grateful for Andy, who is somehow handling this thing.  The title of my blog may be normal is a dryer setting, but our dryer’s in serious fucking disrepair. 

We want Jonah to get the help he needs, and as soon as possible.  Later this month we’re taking him to Child’s Hospital in Boston (somehow), and we’re going to once again ask his psychiatrist for a new med to try.  The psychiatrist is retiring this month, so maybe we’ll get a new one who’s fresh out of school and fired up to help usIf not, I’m going doctor-shopping.

I’m refocusing my thoughts and actions in an unusual but positive way, because it’s all I can do to keep it together.  But most of time I’m tired and bitchy.  I haven’t felt much like writing, or talking to anyone, or going anywhere, or doing anything at all.

I guess these are our days inside the whale.

“Then I said, I am cast out of thy sight, yet I will look again toward thy holy table.”
~ Jonah 2:4

That sounds to me like I know I’m completely in the dark, but I’m going to hope anyway.

“Love and blessings
Simple kindness
Fell like rain on thirsty land
Fields and gardens
Long abandoned
Came to life in dust and sand”

~Paul Simon, Love & Blessings from So Beautiful or So What

Okay, then.   Hope anyway.

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