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Archive for October, 2011

epilogue

Strangely enough, yesterday my blog got more hits than it’s ever gotten.  And today, somebody even subscribed. Go figure.

I am grateful and humbled by those who enjoyed my writings enough to reach out to me and tell me so.  I have more writings over at writing.com, under the author name winklett, of course.  You can find me there if you want; I’ve been a member since late 2002.

I may continue my blog there and just pass-code it.  I’m not sure yet what I want to do.

All I know for sure is I am a writer and I have a story to tell.   If you want to write to me, you can always do so at winklett@hotmail.com or winklett@writing.com.  If I don’t write back right away, I apologize.  Sometimes that happens.

I also closed my twitter account…but you can always find me, because I am always winklett.

I’m winklett everywhere, and I’m still hanging on.

Thank you all.

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fin

“I close my eyes and there’s someone beside me.
Hand in hand, we can only speak in tongues.
He’s pulling me along.

Follow’n down, a trail of crumbs behind me,
My head’s in his hands,

But everything, it still feels wrong.
This isn’t what I thought,
So can I just go home?

~ On the Ocean, Guster

Am I a mother?  To what degree?  In what regard? 

I think it’s time to leave the parent-autism-blogging to the bloggers who are raising the children with autism.  I don’t even have the experience of parenting in common with parents anymore.  And I don’t have the appropriate filter with which to clean my dirty laundry and make it smell fresh before donning it & strutting around for all the cyber-world to see.

What have I done here?  Told and re-told a story, ad infinitum, and I no longer have it in me.  I’m sorry. 

…and have delicious days…

– – –

“It was too late; the shore was far behind her, and her strength was gone.  She looked into the distance, and the old terror flamed up for an instant, then sank again. She heard her father’s voice. She heard the barking of an old dog that was chained to the sycamore tree.  There was the hum of bees, and the musky odor of pinks filled the air.”

The end of The Awakening by Kate Chopin, (slightly edited)

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I gotta laugh at myself.   I’m like The Cure of the bloggers…”Pictures of You” – and the last picture, a cemetery.

Oh the drama.  Thank God I get so I can laugh at myself, and it makes me feel free, joyful.  Today M sent me an Edible Arrangements bouquet.  Delectable strawberries dipped in chocolate and pineapple carved to look like maple leaves.  I let my work peeps have some and brought the rest home.  Fruit on a stick that you don’t have to peel or deal with.  The lazy girl’s fruit, that’s for me.  (I damn near cut my hand off last time I tried to open an actual pineapple).

Seems like I can’t stay in the good place, though.  I do love seeing Boo, enjoying all Jonah’s little sayings, nuances, and innocence:

When Jonah eats a sandwich, he tap tap taps on it with his fingers, then opens it to see what’s inside, often discarding the bread altogather.  I just watch him, listening with my heart, wanting to snatch him up and hold him in my arms.

But then I have to leave.

This not being with Jonah is something I need more time to get used to.  I still start to walk into his room at night, to watch him sleep or tuck him in, and he’s not there.  I still forget.  I cry a lot.  I can’t help it.  But I never quite fall all the way down.  I ‘m just like a Weeble.  Wobbling, wobbling.

What helps is when I remember I am so incredibly lucky.  I can come home from a good job to a loving man, a loyal dog and sweet cat, and some deliciously campy Match Game ’74 or hilarious All in the Family.   I can know Jonah is safe, and in as good a place as he can be.

Andy called Jonah’s house earlier and was told Jonah was good.   I’m going to call it a fantastic day, read some, and go to wonderfully warm and soft dream-time bed.  I love sleep.  T’was a time I could stay up til’ one or two and wake for work the next day, no problem.  No more.

“Those were the dayyyyyyys!!!”  ~ Archie & Edith

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“I’m…watching all the colors and the shapes

My face against the window


My face against the window

These moments

they can never last
Like a sad old man with his photographs


wishing for the things he cannot change…

Standing tall up here

My face against the window


My face against the window

So the architects and the engineers


Build their monuments, make their souvenirs

We are occupants;
It’s a trap, this town.


We are burning up
We are fading out…


We are shooting stars…”

~Architects & Engineers by Guster

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we are shooting stars

Just typed a long blog post, complete with frequent “Save Draft” both automatic and self-saving, published it, and POOF it is gone.  Not in drafts, not anywhere.

Lots of pictures in it.

I guess it wasn’t meant to be.  It’s just as well.  It’s been a sad weekend for me and this way I can let the whole post go, the whole time just disappear; all the people – we are shooting stars…

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Yesterday Jonah required a “two-person takedown” at school. 

Whenever there is a “two-person takedown,” they are required to call a parent to explain what happened.  When my cell phone rings at work and I see their area code, my heart always jumps and then sinks, diving down into a numb place before I answer.  I don’t want to hear it.  I don’t want to know it.  I want to be ostrich-mom and I can’t, and I want to believe he doesn’t hurt anyone anymore, but he does.  Not nearly as often as before, they tell me, but I hate it just the same.  For me it is the worst aspect of his autism, by far. 

He was in music class, which I would imagine he’d love.  I don’t know what upset him but he became frenziedly violent.  He was removed from the music class and they attempted to bring him back to his regular classroom, but to no avail.  Hence “the two-person takedown.”

He breaks glasses and hits, scratches and tries to bite.  He fights dirty, no holds barred.  Then they calm him and he gets his proverbial shit together, but it is impossible to say for how long. 

The time bomb ticks.

People ask me how Jonah is doing.  A lot of people.  I appreciate it and their concern means so much to me, but more often than not I ask them to please read my blog.  I know that might sound insulting, or even mean, and I try to explain:  I can’t live this every hour of my life. 

If I tell the same story over and over again, I become depressed and anxious.  If I worry and perseverate on the craziness of it all, I can’t function.  So I set aside blocks of time to tell the tale through writing, which is easier, and better, and usually much more articulate anyway.  I apologize to the people who want to know about Jonah when I just don’t have it in me to talk about it, but I get the feeling they are hurt and insulted anyway.

I hate that I can’t hold my boo in my arms and rock him back and forth, singing to him and calming him.  But he is 9, not 2, and the whole point of the school is to increase independence and learning, so kids are not treated like babies just because their cognitive ability may be low.  I have to admit I would have continued to baby him had he not gone off to school.  I love him more than most people in my life know or understand.  But hearing about his anxiety, his meltdowns, his aggressions – it’s too much sometimes.  I don’t know what he understands and I don’t know what to do most times. 

I trust his teachers and caregivers to nurture and love him, but is that too much of an expectation?

The effect it has had on my mother, and on my relationship with my mother, is significant, to say the least.  Jonah is the only child of an only child, and to my mother he is the sun, moon, and sky.  He is her everything.  It makes me feel like I must compete with her to prove he is my world as well, but it’s so different for me.  For me, there is also deliverance from a life I couldn’t live anymore. 

I believe with my heart this is the best thing for my son. His best opportunity at independence – at freedom from whatever it is inside him causing him distress. At competency in life skills…at learning.  At life.  I assert this a lot in my blog posts, I know.  I have to.  I need it to be true.

But what if I’m wrong?

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Sometimes I joke that I’m not Darwin’s poster child.  I’m scrawny, kind of weak, hyper-sensitive, and rather meek.  I have asthma, osteoporosis and a mild case of Marfan Syndrome.  In any given room, I’m probably not the fittest.

If I’d been born in 1869 instead of 1969, I likely would not have lived through childhood.  Everyone who knows me well is aware I have a near-obsession with Laura Ingalls Wilder, who wrote the Little House on the Prairie series of books about growing up as a pioneer girl on the prairie.  Back then every family seemed to have a passel of kids and inevitably, two or three never made it past infancy.

Laura’s baby brother, Charles Frederick, died when he was 9 months old.  Laura’s only son, never named, was only a few weeks old when he died.  And Laura’s daughter, Rose, lost her own only son when he was just a baby.  Laura’s sisters had no children of their own.

The Ingalls ancestry ended.

Back then, if you made it past infancy, you faced a myriad of other killers like Scarlet Fever, blizzards blocking trains (fuel/food) for months at a time, grasshoppers and crows destroying crops – starvation and illness and accident.  From all directions death came at you, all the time – and your “job,” essentially, was to survive.

As medicine advanced, people lived who otherwise wouldn’t have before.  Simultaneously, the Industrial Revolution started long paths of both invention and innovation, but also of contamination and pollution.  The weak ones survived, Darwin be damned.

Maybe things like autism are the result of the “weak ones” not only surviving, but also being exposed to God-knows-what in the air, food, and water.  I don’t know if I’m talking nonsense or not, but I’ve been thinking about it all.

Seems to me we enjoy looking back arrogantly and laughingly at things we used to believe.  Can you believe we once thought the earth was the center of the universe?  That leeches could cure illness?  That cigarettes are good for you?  But now, we know better.  Right?  Probably not.  In 150 years they’ll be looking back just as disparagingly and laughingly at things we “know to be true” today.  We’re in the infancy of understanding autism, I’m afraid.  In some ways I’m as much a pioneer, like it or don’t, as Laura Ingalls Wilder.  Maybe that’s why I’ve always felt drawn to her.

Thus ends the preface of the story of Jonah this weekend.  His school had a “Harvest Festival” on Saturday, so my mom, my aunt, my cousin D and me headed down to visit.  What we didn’t know is that the last 20 minutes of the ride would take an hour and 20 minutes to journey.  There was a wool and sheep festival at the local fairgrounds, and everybody was headed for the herd.  It was interminable, the cars crawling like ants, people on foot passing us just like in the very beginning of Office Space.   At times I actually put the car in PARK.

Eventually we called Andy and decided to go separately and meet in Jonah’s classroom.  There we saw Jonah’s cool teacher, who told us Jonah was very bright; she gave us big piles of his art and worksheets.  He gets all the math correct, evidently, and can even write (with all the skill and care of your average physician).

Part of the harvest festival schedule was an invitation to view the brand new recreation center… which I guess we’ll have to check out some other time, because we were so late Jonah had already eaten lunch at the recreation center and was headed back to his house with T, one of his caregivers.  When we saw him, we overwhelmed him, I’m sure.

Daddy and mommy and grandma and Aunt T and D…all come to visit, all wanting hugs and kisses.

D hung back, smart and patient, knowing we ought not to be crowding in on him.  But damnit, I’m his mommy and I wanted to hug and kiss my boy.  At any rate he survived the converging mass and almost immediately asked for apartment (Andy’s place), so we walked to our separate cars and drove to the apartment, me riding with Andy and sitting next to Jonah.  We sang Barrel of a Gun and Keep it Together on the way, me reaching for his hand, he singing loud and right in tune, staring at me and grinning.  So far, so good.

At Andy’s apartment, Jonah stripped all his clothes off almost the instant he passed the threshold. 

Bath time!

Happily he gobbled yummy light green grapes, a sandwich, Lindt chocolates (only the best for grandma’s boy), and caffeine-free black soda.  Then he got all hyper and ran into the bedroom, jumping on Andy’s bed and shrieking as we tried to dry him off.  He put on his big-boy underwear and dressed himself almost completely, then requested car ride?

So we planned to take him to duck park, which I should add to the glossary, since he goes there a lot these days.  It’s a local park not far from Andy’s place. My mom and Aunt T and D followed Andy, Jonah, and me to the park.  But when we got there Jonah suddenly acted all panicky.  No duck park! he cried.  More car ride?

I recognized the ridiculousness of the other car following us around as we gave him a car ride and I came to the frustrating conclusion that this visit was over – without nearly enough time spent with Jonah.

So we left.  I drove us all home in the rain, crying for the first 15 minutes or so, quietly, my tears rolling unchecked to drip on my jacket and jeans.  After a while I stopped crying, it stopped raining, and we stopped at Love Apple Farm to buy home-made peach-apple pie and fudge.

Andy gave him his car ride and brought him back to the apartment and, eventually, back to his house at school.  It is always Andy who has to hear Jonah crying – sometimes asking for home – when he leaves his son behind.  Andy has a certain quiet strength and presence that belies the pain I’m afraid he struggles with a lot.

On Sunday at Andy’s, Jonah was very aggressive and really hard to handle.  Andy and I are both wondering what’s the right thing to do here.  Are we visiting too often?  Do we have to leave him be for a while so he can acclimate, even if  “a while” means a month?  I will call his behavior specialist tomorrow, and we’ve got a meeting coming up at the school about Jonah, but in the meantime I’m left to wonder if he’ll ever get better, happier, more self-regulated… more able to keep it together.

Funny how I wonder the same things about myself.

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“I want to be where I’ve never been before; I want to be there and then I’d understand…know I’m right, and do it right – could I get to be like that?  I don’t know and I don’t know; it’s harder every day.”

~ Two Points For Honesty, Guster

I just typed for an hour about an unkind co-worker and how much it hurts, and my psychologist’s cool “time-release therapy”… about my shifting perceptions of Andy and my parents…about experiences with them, trying to put it all into perspective and be at peace with everything my life is now.

Then I deleted every word I’d written.

I know who reads my blog and I’m not here to hurt people or throw them under proverbial busses.  I don’t want to be subversive or accusing here – especially when none of it had a thing to do with Jonah, who is doing very well at school and in his house, they tell me, by the way.  I’ll see him Saturday and I should focus on that.  Plus my dad gave M and me tickets to see a show Saturday night, and I’m supposed to meet M’s sister on Sunday, so that will be cool.  Focus on the good.  Accentuate the positive. 

Be grateful, you whining little crybaby.

I should start an anonymous blog and vent there about anything I want.  But this sure ain’t that place, so here’s a recent picture of a smiling Jonah Russell instead.

That’s right, Boo.  Smile away.  Smile for us both.

I’m going to bed.

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I didn’t go to see Jonah this weekend.  Friday I took the day off work and caught a ride with some other folk to a friend’s son’s wedding in Brooklyn.  It was a beautiful day, & the wedding and reception went off without a hitch.

Strange timing, though.  Andy and I signed our legal separation papers on Monday.

Four days later I found myself sitting on a pew, in a big cavernous church, watching two people get married until death do them part.  I tried not to let it  make me all sad, or envious, or bitter, or any other dumbass emotion I’d have the tendency to entertain.

I forgot my camera, too, but I’ll share a cell phone picture of the reception table – lovely!

Anyway.

I miss Boo.  It feels too long for me to go two weeks without seeing him at all.  And when I call at night to see how he’s doing, he’s almost always already asleep.  It’s not like he’ll talk on the phone, and I don’t want the sound of my voice to upset him or start him pining for “home.”  Then again, I don’t want him to miss mommy and wonder where she is.  Of all the things I’ve had to kind of guess at with autism, this is one of the hardest.

Luckily Andy lives so close he can take Jonah to his apartment at least once a week, after the playground, then give him one or two much-enjoyed baths and feed him the “yummy-light-green-grapes” my mother brings along when she drives down every Saturday.

I think Andy actually visited Jonah three times this weekend, if you count tomorrow, because I think both he and Boo have the day off for Columbus Day.

Thank God and little baby Jason he’s down there, and has a bathtub and a big daddy heart as well to hold him close-by his only son.  I wrote Andy a Father’s Day poem a few months after Jonah’s autism diagnosis.  It applies to this day, for Jonah has been blessed with a fantastic dad:

Just Like Any Other Boy

You take your shirt off, hold me, newborn, to your chest,
your heartbeat drumming fa-ther, fa-ther, fa-ther –
and father arms, and unbelieving eyes, and warmth
so rocking, softly rocking, in your father arms I sleep.

You wear me in a baby sling, faced out so I can see.
You bend close to kiss my thistledown fine hair
and you are smiling, and jouncing me in jest, and singing
unashamedly off-key: the bear went over the mountain…

You see me spinning; hear me humming, seek a diagnosis,
your heartbeat drumming fa-ther, fa-ther, fa-ther –
now you hold me extra-special close, you whisper precious son
and place me before everything there was or ever will be.

You chase me on the playground past the toddlers who can talk
You bend close to kiss my thistledown fine hair
And I’m caught and tickled, giggling, just like any other boy
And you are smiling, and jouncing me in jest, and singing

You take your shirt off, hold me, two now, to your chest,
so rocking, softly rocking, in your father arms I sleep.
Your heartbeat drumming fa-ther, fa-ther, fa-ther –
You place me before everything there was or ever will be.

– – –

I, on the other hand, am maybe not so great a mom.  I don’t know.  I’m definitely not one of those born-to-be-a-mother moms who wanted three or four kids, special needs or not.  And mid-life has not increased my self-confidence in any arena.

I question my motives at every turn.  I require two different types of medication just to operate like a functionally employed human being, am falling far short of goal at what I’m paid to do despite my most earnest efforts, and wish only, really, to play the role of professional philanthropist.  I like people.  I trust them.  I’m a bleeding heart & want to help every cause that comes along.  Then when I’m inevitably betrayed in some small way I lose faith in humanity entirely…including faith in myself – as a mother, a partner, a daughter, an employee, a friend.

(I have a wonderful therapist and it’s obviously been too long since I’ve seen him).

It doesn’t help that it’s October ninth, my least favorite day of the year.  Ten/nine/eleven.  Nine years ago on this day my best friend Gina killed herself with a gunshot to the head.  I wrote ten billion poems afterward, like this one.  I guess I needed to, or I was going to go crazy.  Hell, I guess I went crazy anyway.

Every October 9th I buy a balloon, usually purple or blue, from the Party Warehouse, and I drive to Memory’s Garden, a park-like cemetery where Gina and I used to visit often to sit on a bench by a pond and talk.  Every year I go to the pond near the bench, I tell her I love her, and I let the balloon go.  Always she takes it quickly, removing it from my sight faster than seems possible.  This year the Party Warehouse gave me my dark blue balloon for free.  My God it was a beautiful day – 80 degrees, probably.

As usual, I released the balloon, managed to snap a picture of it with my phone (I forgot the camera again), put the camera down, and visually followed the balloon just above the tree tops until  POOF I couldn’t see it anymore, anywhere.

I’m sure the blue balloon on blue sky didn’t help me follow it up in the air, but I feel just as sure she got it.

Nine years.  Now she’s been gone just about as long as I knew her.  I hope all the memories don’t fade.

I can honestly say I’ve never been as close to another human being (except perhaps my son, but that’s a different kind of close) and I don’t anticipate I ever will be.  I’m blessed to have had that friendship at all.  Jonah was just 5 months old when she died, but I’m glad she got to see and hold him.

I ask her all the time to look after him.  Be his angel.  Keep him safe.  I wonder if this is delusion on my part, or if she hears me.  I’m pretty convinced she hears me.  I hope she comes for me when I die, and we can both look after Boo.

This concludes my stream-of-consciousness blog post for today.  I love bedtime, and am looking forward to waking up to a different day than this one.

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Another poem today:

Snozzberry Tulips

Willy Wonka dreams
tulips
in five fruit flavours
(mostly snozzberry)
grown on mint grass hillsides beside fizzydrink fountains.
Awakening, he plants a zillion bulbs.

PI poem – 3,1,4,2,8, & 6 words per line.

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