Fragments

Door, Upper West Side

I have a new friend and I'm not telling her name but she is delightful and I am happy. This is a detail from her door. 

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My walk through the city tonight feels like a stroll through a movie set. Here, a cafe where every single person seated at the outdoor tables is wearing a blue shirt, hues ranging from sky to azure to midnight. There, a blonde family of five - impossibly attractive and dressed to the nines for a festive occasion - pose for a photo as a man who can best be described as an African-American Gabby Hayes crosses the frame, fur lumberjack hat squashed down onto his head, pushing his squeaky wheeled shopping cart filled with dingy stuffed animals and dented soda cans.

Yes, this is my city. We all come out of central casting.

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Sunday, for the first time in ages, I stopped at Zabar's to pick up some lox, and had forgotten the artistry of the slicers there. While the stuff we usually get from our local bagel place is serviceable, this was a revelation: fresh, delicious and so thin you could nearly, as the saying goes, read the newspaper through it.

While I was watching the counter man slice, before I could stop it, the thought popped into my head that I should bring Walter some Zabar's lox next time I go see him, as it always delighted him so when I would arrive bearing real New York City appetizing. And then the sadness rushed in, a now constant tide.

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Jacob has now woken up at 5:30 AM for more than a week.

This usually means that he is about to undergo a big leap in growth and understanding, his brain too excited to slumber past dawn.

It could however, just be an attempt to get uninterrupted screen time on his own terms, no brother to share and negotiate with.

Only time will tell.

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Today I sat in the "big yard" with Ethan after school, eating our ice creams in a shady spot and watching the kids swirl around us, playing their hearts out. We are both still easily tired, the legacy of the stomach bug that swept through our household earlier this week, taking us down like bowling pins, Ethan the first to go on Monday afternoon.

So instead of jumping up to join the fracas, he sits beside me, in the quiet watching, rests his head on my shoulder, waves back at his friend's younger siblings when they spot us and yell hello.

I look at the Kindergarteners among them, and then down at my nearly eleven year-old son, sifting through the years that brought him from that to this. I can't quite believe that he was ever that little. Or that his time here is soon to come to a close.

Six years spent in these red brick walls. Now less than two weeks until goodbye.

Tonight is the 5th grade dance. The girls will dress in taffeta and heels. The boys will need to be persuaded to wash their faces and put on clean t-shirts. They'll arrive in groups, still separate; the boys here, the girls there.

Growing up. But not quite grown. Ethan's heart is mine for yet a little bit longer.

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I need to change the name of my blog. My sandwich is open faced now. Open to the heavens. 

Although, needless to say, most days I am still quite squashed.

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I thought we were finally done with Thomas forever... until Jake stared obsessing over him again about three months ago.  Only now we have to discuss which season and which episode number and who the narrator is and what year it came out and is it a "classic" episode or a new one and does the narrator talk "Americanish" or "Englanish" and...  (I say bomb Sodor back to the stone ages & be done with it!)

Well, we did get a break from it for a while. Over the years, we have cycled through obsessions with Teletubbies, Batman, Bakugan, Blues Clues, Ben 10, Power Rangers, Sponge Bob, Dragonball Z Kai, Pingu, and - do NOT ask me why - old basketball games/teams. Specifically the 1974 Celtics for some reason - and we're New Yorkers! Some of these were a relief, while others made me long for the fat controller.

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It has been a month since my last post.

A month.

I never thought I would lose my voice for so long.

But the other losses have been adding up, cumulative, weighing me down. The words swirl in my head, coalesce into nothing more than little jagged fragments. A sentence here, a thought there, an amusing facebook update at most.

I write them down, thinking I will flesh them out into posts soon, but there they remain, dry bones waiting for life.

I am tired of waiting. Of silence.

So I scoop my shards up, spread open my hands just a bit, so that they may waft out between my fingers, sprinkle down onto this page, and leave them there, where they fall, willy-nilly.

Not quite a post, but not quite NOT one, either.

A start.

Clearing my throat.

More to follow.

Bits and Pieces

Folks? I just don't have a coherent post in me.

Preparing for the launch of Special Needs Sibling Saturdays, writing yet another memorial post for my late father's upcoming 94th Birthday, and having another fictional voice pop into my head and demand to be heard and written about for this week's Red Writing Hood prompt have left me written out.

Add to that real life, with two (SN) kids, an elderly mother, a husband and a cat to care for, and I'm just plain wrung out, too.

And yet here sits my blog with nothing happening on it since last Saturday. I'm watching the tumbleweeds rolling down main street, and none too pleased about it.

Nothing majorly newsworthy going on in my life, but I have little bitty somethings jotted down here and there, bits and pieces that I would love to just throw up here... wait, that's not *quite* the image I wanted to project. Let's just say that while it's not Friday, I'm doing a "Fragments" post today, anyway.

So herewith follow some little snippets I've written that don't quite have enough gravy or gravits on their own to expand into a full blown post, but are too convoluted or substantial to wrap up in 140 characters to tweet out on Twitter...
 

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The other night, apropos of nothing, but everything, Ethan blurted out: "I really miss Grandpa Jim, I wish he were still alive, he was a lefty like me." He then asked for a big lap hug.

While curled up together on the sofa, Ethan proceeded to tell me that he knew how much Grandpa loved him and how unfair it was that he had died while he (Ethan) was still so young. He even cried a little. Way to break my heart, kid.

I hugged him close and confirmed how very much his Grandpa had loved him, was proud of him, and ever so grateful to have another southpaw in the family.

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Jacob... Jacob... Jacob.  Jacob is going through... something... right now.

We're tinkering with his medications and supplements. Not found the magic formula yet. A new medication that we had thought might really be wonderful for him, help him to focus? Instead induced some mild mania. Damn. He started being difficult to put to bed, woke up before 6 AM. Every day.

And did I mention he was on this over the February "break."  Yeah.  *That* was fun.

He was just getting over that when we hit... The Time Change. Which I am beginning to think is an evil conspiracy against people with autism & their parents, not just an unfortunate twice yearly event.

Jake laughed maniacally in his bed for 1/2 hour each night and was impossible to wake up in the AM. Things have nearly settled back to "normal" which is a good thing as I am getting *really* tired of this.

The mania has tamped down, but is not 100% gone.  Jake is currently rather obsessed with a MAD TV bit: "The Fast & The Curious, starring Vin Diesel & Curious George." Yup.  He keeps thinking about it and cracking himself up. Loudly. In school, too. At least he has a sense of humor.

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I am a night writer.  My best writing... any writing that I do that is at all powerful, lyrical, evocative, my strongest pieces? Were inevitably written around 1 to 3 AM. Something just comes out from me then, in the quiet time when everyone and everything else is asleep. (Well, it *is* NYC, so not exactly *everyone* but the noise is considerably tamped down, here in my sleepy family neighborhood, the UWS.)

It's just my natural circadian rhythm, has been that way since I was a kid. The problem with being a parent and this? I can't really sleep in now, can I?  Jake's bus is coming for him at 6:45 whether I have slept or not. He needs to be up by 6 to be ready for that bus, so I have to be up at 5:45 to be ready for him.

And people? 5:45 AM? Not my natural waking time. Off by about... oh, four, five hours. Sigh. About 10 more years of this ahead of me. Minimum. Sigh. More coffee ice cream anyone?

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Ethan has a new obsession: Disney's Club Penguin, an online open ended cyber-community for the seven to ten crowd. And it's free!

Riiight. Unless you want to save stuff or acquire things that are that really cool. Then you must buy a membership. At a monthly fee that's small enough to feel insignificant but large enough to make your kid balk at spending his own hard earned allowance on it..

But your kid can play at the free level for quite a while. Until they are totally hooked and have invested time and care creating their special character.  Gotcha!
 

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Reading a friend of mine's blog about her life with her daughter with Aspergers recently, I felt an odd and uncomfortable envy. It made me think again about how hard it is for me, for my husband, for our family that the biggest manifestation of Jacob's autism is in the realm of language processing. Because the rest of our family? We are talkers.

Conversation is how we relate. We think and talk and talk and think. And talk. About everything. And Jacob is just completely left out of that. So much of my time with him is spent in silence, or listening to his relentless, repetitive questioning about whatever his currently obsessive pet subject is.  Right now it's movies and movie opening dates, or the cat.

Much of the time I try to re-direct him, work hard to steer our conversations toward any other subject.  But it's rather like steering a car with a blown tire, always pulling hard and fast to one disastrous side.

And I know that at age 4, 5, 6, when not yet capable of even this, I would have been deliriously happy to be having these "conversations" with him. But still, it's exhausting, and not very rewarding.

Especially because I am so aware of how else it might be, how a delightful conversation with an eight year old can just blossom forth.

And I know there are parents of more severe, non-verbal kids on the spectrum who would give their right arm to be having these type of annoying and inane conversations with their children.

But still, I sometimes feel I was MADE to be the mother of a precocious, ever-curious, quirky, mildly Aspergers kid because I am the repository of a thousand bits of odd and arcane knowledge.  Nothing would delight me more than spending our time together looking up all the questions that stump me. But that is just so not to be.

Also? I know there's a "grass is always greener" syndrome here, I know how much those friends and their kids also struggle, suffer; would never mean to imply they have it easier, a better life; I do not play the ranking game.  It's just that I was, myself, more like an Aspie as a kid than a PDD kid like Jake, and it seems to be just a bit more comfortable to parent kids who are more "like us." Although, of course, sometimes, so NOT.

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So it's a limbo sort of time, this late-winter, this not-quite-spring.  It has been some hard winter, and everything seems to be in retreat, just waiting for the warming. Including, it seems, my brain.

We are in a holding pattern, all of us. I have no big, brilliant thoughts coming my way; just the day to day plodding, trodding of the same earth. I just keeping on putting one foot in front of the other, and l make it through each day, one at a time. Sometimes that just has to be enough.

Spring will come. Warmth and sunshine will return to the earth. The cherry trees will blossom.

Riverside Park, April 1998

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And, because I want to leave things on a more upbeat note... the other day Ethan, trying to cheer me up, told me: "Mom, you know I hate Jacob LESS than I hate broccoli, right?"

Well, that's something, isn't it? Because he REALLY hates broccoli.



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