More from Jacob's Batman files

As you may well imagine, Jacob is nearly beside himself with anticipation over this weekend's opening of the Batman movie: The Dark Knight Rises. Batman has been an on-and-off obsession of his for years.

Two-Face, one of Jacob's favorite Batman villains

As far as autistic obsessions go, I find Jacob's fascinations with superheros (& their counterparts, super villains) to be, well, fascinating. He is particularly intrigued with the notion of the double / secret identity.

He is always talking (in his way, which means asking closed-loop questions) about this.

"Who is Bruce Wayne, Mom?" (Only acceptable answer = "Batman")

"Who is Batman?" (Answer: "Bruce Wayne")

Occasionally he will get deeper into the matter of the transformation itself and ask "What happens when Batman puts on his cape, Mom?" (Answer: "He becomes Batman.")

That it's an obsession with people - albeit fictional people - makes me happier than if it were, say, train schedules for (an overused) example. Especially since he also likes to talk about what they are thinking and feeling.

According to Jake this is "Bane" the main bad guy of the new movie

We are going to a 9 AM screening on Saturday (remember, Dan is in "the business" and the producer is a friend of his) and Jake can't stop asking "What are we doing on Saturday, Mom?" even though he knows full well the answer.

I am very glad Jake has an activity to keep him happily occupied on these dreadful heat-wave weekend days. He will go though a half ream of paper over the course of a week.

And have you noticed how his style is evolving?  He is drawing fewer giant heads and starting to include more bodies, slowly figuring out how to do that (whereas before, his bodies were mostly vaguely rectangular shaped lumps).

His faces are becoming a little less interesting in the process, but I'm sure the details will come back once he gets this body stuff figured out.

And the rest of these guys aren't necessarily Batman related, but just some of the recent crop that I found particularly intiguing or endearing.

Enjoy.

I think of this one as "Introspective Superman" - less chiseled, more thoughtful

(For more Jacob art posts, click HERE.)

What remains possible

Some days are more possible than others, more seeming infinite in nature. Others shrink down into a nubbin, a hard, mean little kernel that sticks in my throat.

It doesn't help to have a raging headache. It doesn't help to be worn down so thin from autism that I am surprised I can't be seen through, more apparition than person. (My spirit, that is, my waist is thickening like pudding.)

I love my son to pieces but some days can barely stand to be with him; and by bedtime it has been one of those somedays. And it's no one thing, just every little thing. From the moment I greet his bus, on - late today, so I am granted a fifteen minute reprieve, fifteen minutes of sitting in my lobby watching neighbor children arriving home, chatting brightly with their moms or nannies, willing myself to not let envy poison me down to the bones.

I know what Jake-off-the-bus will ask: "Can I pet Cocoa? Where's Cocoa? Can I pet Cocoa? Where's Cocoa, Mommy? Let's go see Cocoa, Mommy!" over and over, and over and over. The same every day these days, his obsession wearing a groove in my soul.

It's nearly all he will talk about, day and night: the cat. The cat, the cat, the cat, thecatcatcatcatcatcatcatcatcatcat; the bloody cat.

I love the cat but I would toss her out the fucking window if that would make Jake stop talking about her. And chasing her around the apartment. And dragging her into his lap to pet her. And petting her sometimes gently and sometimes too roughly, so I never know which it's going to be.

I never know if it's safe to leave her alone with him, and so I have to hover and watch and all the YEARS I've gained of being able to trust that he's pretty much safe in the house so I can watch him loosely and go about my business have to be heaved aside.

I can't leave him alone for a minute or the cat may get inadvertently strangled. Strangled by love and Jake's hands that do not understand you can't carry a REAL cat by the head like you can a stuffed animal.

And Jake? He really is a good, compliant child. Jake doesn't want to, but he does his homework. I work hard to maintain a cheery exterior, to praise and smile when inside I am weeping that it is pretty much the same homework he has been doing for the past four years. That he needs a number line to add and subtract, while his twin has moved on to geometry and equations.

And then he sculpts this incredibly interesting "cat-dragon" out of thera-putty on his five minute break between math and reading.

And then he reads so beautifully but it is so clear in his cluelessness at answering the questions that he retains so little. And I am now getting envious of all my autism mom friends with "little professor" aspie kids who have no social skills, but boy are they academically advanced.

And then I feel guilty for wanting my son the be someone other than who he is, and stupid for feeling envy which is the world's most useless emotion and dangerous, too.

And then it's time for dinner which I have to make in the kitchen while listening hard for signs of cat torture coming from the living room, but Jake can't find the cat tonight which is somehow worse.

"Kitty? Kitty where ARE you?" comes his frustrated cry. "I can't find Cocoa! The kitty is missing! HELP! HELP!" he yells, running through our tiny apartment. But Cocoa? She has her hidey-holes for when she simply must get away from Jacob's obsessive love. Lucky cat.

A bit later, Ethan has been picked up from Hebrew school, dinner been wolfed down by hungry growing boys, and Jake is in the bath while Ethan tackles 4th grade math.

Jake is having a loud, growly day and I don't know how much more animal-boy I can take. Every answer I give that he doesn't like is met with a loud snarl and hands made claws, his face a grimace. "I'm a scary monster" he says "I'm a vampire." Halloween can not fade fast enough.

"Can I watch TV?"

"No Jake, it's bed-time; after your bath is BED."

SNARL

"Can I watch TV?"

"No. Bedtime."

SNARL

"Can I watch TV?"

"I am not going to answer that, Jake, you have asked me TEN times in the last two minutes and you know the answer. What's the answer?"

SNARL

"Can I watch TV?"  

And tonight in bed, for maybe the first time in nine years I do not sing to him, I tuck him in and flee. Because he is growling and giggling alternately with every step up the ladder to his top bunk and I know how it's going to go: I will start to sing and he will giggle and growl and I will tell him I can't sing to him if he is isn't quiet and he will stop for a moment and sound so contrite, only to start again a beat later and it will go on and on and on.

So tonight I don't even begin.

My head is pounding and I can't. I just. can't. do it.

I call out that I love him on the way down the ladder. I tell him I don't sing to animals and monsters and I leave. And cry. And paste a better face on before entering the living room to snuggle with  Ethan and Harry Potter on the sofa.

This I can do. Tonight.
 

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A little time with Ethan

Jake’s been taking center stage in the blog for a while now (what with the autism and all), and Ethan wants me to remind you folks that he exists, too.

So here are a few more snippets of life with Ethan. Enjoy him. (I do.)

Ethan, Summer 2011

The other night Ethan complained to me "My life is boring right now."

"What? Why?" I asked, slightly stunned, what with the fun camp and many friends and all.

"Well, there's nothing going on in my life. I kind of like Gogos, but not THAT much... There’s nothing I'm REALLY into right now”

Ahhhh, I see, life without an overriding obsession feels… different... lesser.

I suggested to him that maybe it was time to take up a real life hobby that could grow with him - like a musical instrument, instead of him outgrowing - like all his Japanimation toy obsessions: Power Rangers, Bakugan, Pokemon, Beyblades… and now Gogos Crazy Bones…

"No, Mom, I just need a new THING to be into."

Well, at least it's not girls. Yet.

(Also, just so you know, this conversation took place, of course, while he was on the toilet, just before bedtime. Once a bathroom conversationalist, always a bathroom conversationalist.)

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At bedtime the other night Ethan got the giggles -- this is, unfortunately, a not uncommon occurrence. He gets these funny ideas, and well, they make him laugh. Not the most conducive to sleep, now, is that? 

Ethan. My budding insomniac night owl child.  (Sigh.)

So, this time the “funny thought” ran along the lines of “wouldn’t it be soooo funny to have a boy and name him Muriel? Or Betsy, or Isabel.” Somehow naming of the inappropriate variety is a big theme for Ethan, and a frequent source of mirth.  (As all gender reversals are, too, come to think of it.)

He was going on and on, suggesting girlier and girlier names as possible candidates for “Worst. Boy. Name. Ever.” I was trying to put the kibosh on this, to shush him up, both to help him calm down enough to sleep and so as not to wake Jacob with his chortling.

But then I couldn’t help myself.

“Well, you know there’s that famous song about A Boy Named Sue…”

Ethan didn’t. He wanted to know all about it.

I told him a tiny bit about Johnny Cash and the song; just a tease, really, enough to intrigue him. And then I told him I would find it on You Tube for him the next day and play it for him ONLY if he quieted down and went to sleep right away.

It worked.

The next day, when he came home from camp, I had it all cued up, waiting for him, keeping my word. I played it; we got to the end.

And his reaction?

"That’s just WEIRD, mom."

And then the thousand questions, about the song... "Why did he leave his family... and why does he want his son to be a fighter... and why did he want to kill his Dad... and why would ANYBODY name a boy Sue and... ?"

And the singer... "Why is he the man in black... and why is he playing in a prison... and why is his voice so low and... ?"

And a part of me wanted to say "It's just a song, Ethan."

Except it isn't. It's a part of our heritage now, our mythic landscape.

And Johnny is one of the Great Beings who have walked among us (although of course he was also just a man; someone's son, father, husband, brother, grandfather).

And you know who wrote it, right?

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Last night I attempted to explain the mechanics of humor to Ethan. All about how to tell a joke and what makes a joke funny or not. Not easy stuff to quantify.

It started with a discussion of swimming at camp, he talked about learning the backstroke, which led to my telling him that old chestnut of a joke from the classic lexicon:

"Waiter what’s this fly doing in my soup?"

“The backstroke, sir.”

(cue rimshot)

He then wanted to hear more waiter jokes – so I told him the “Who wanted the clean glass?” joke and then started in on other “classic” jokes, like the “... walks into a bar" formulation.

Silly me, after much pleading I finally told him my favorite walks-into-a-bar joke. Which, unfortunately involves a certain knowledge of existential philosophy. It begins "Descartes walks into a bar..."*

Have you ever tried explaining existentialism to a nearly 9 year old?  (Yeah, me neither.)

And then we ended up talking about how certain variations on the chicken-crossing-the-road are funny and some are not.  And why.

When I said “and then, when you deliver the punch line, you have to drop it in just right”? He thought that was hysterical.

He had never heard the term and got very distracted and entertained by the idea of ACTUALLY punching someone while telling a joke.

Sigh.

I guess he is still a not-yet-quite-nine year-old boy after all.

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And those are all the tales of Ethan I have to tell... today.

You know there will be more soon.

Because Ethan keeps being Ethan.

And that?

Is entertainment.


*Oh, you want to hear the Descartes joke? Really? OK. It's short, sweet, a little absurd, definitely goofy (and I love it):

Descartes walks into a bar.

Pulls up a stool, sits down.

He starts chatting with the other folks at the bar.

The bartender is getting impatient, asks him: "So, buddy, are you going to order a drink?"

Descartes answers: "I think not."

And promptly disappears.

(cue rimshot)


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And so it goes

I thought it would all get easier as Jacob got older and matured, grew into himself; as his language developed, engagement with the world expanded.

Time to think again.

Right now it is getting harder and harder to go out with Jacob. Along with expanding interest he is becoming less easygoing. He now wants what he wants when he wants it. And also? He will not be easily denied, distracted, redirected.

And Jacob? Loves babies. If I am anywhere near a baby or young toddler  (= pretty much anywhere out of our house) I can't take my eyes off him for a minute, so great is his love of and desire to interact with babies.

With babies we know personally? Usually a tolerable situation will emerge (with close supervision) and can actually be a great source of delight for all concerned. Because Jacob will talk to a baby for hours, asking him questions, shaking a rattle in front of her, taking a just walking toddler for a cruise around the room.

And the babies? They love Jake. Because he talks to them like they are people, equals, doesn't talk down to them in baby-talk; will pay them endless attention. And what baby doesn't want endless attention from a big kid?

Jake with baby friend at Greta's Bat Mitzvah this May

With complete strangers, however, who see this giant, 80-pound, 10-year-old-looking, yet 3-year-old-acting boy about to pounce upon their tiny baby? A frightening situation at best.

I look away for a minute, like to check on my other son, make sure he is still in sight. When I look up there is Jake making a bee-line for a stranger and her... oh, no, sleeping baby. So I have to drop everything and run an interception move, shouting at the top of my lungs: "Jacob, no! Come back, we don't know that baby!"

Sigh.

Today was Ethan's 3rd grade end-of-year picnic. I had no sitter, my husband was both working this evening and so jet lagged (having just returned from his week working his ass off teaching in Milan) as to be a useless zombie this afternoon... in other words, I was (once again) alone with both kids.

So I had to bring Jacob along. It won't be so bad, I thought, even though Jake goes to a different, specialized school, he has been coming to his brothers events for years, no biggie.

Jake used to be easy at these things, happy to sit near me and play with toys I'd brought along.  But now, runs off to the far reaches, often in search of babies. Fortunately, relatively scarce at this big kid gathering.

But the other thing he does? Try to talk to and interact with the other big kids? It doesn't go well.

Because he's strange.

He's either talking about movies, reciting when they will open and what they are rated, or he's asking strange questions. The kind that might get him beaten up, like: "Are you a baby?"

Or? He's walking right through the middle of heated ballgames, not noticing there's a game going on. Or even worse, noticing and grabbing the ball and running with it, because he thinks that's playing with the big boys.

Great. Something else that will be getting him in trouble. (That happened, badly, yesterday. I started to write about it, just couldn't finish that post "And so it begins" yet, even though it should have preceded this one. It's still too raw, will be coming soon.)

Today? He'd brought a large toy train with him, and proceeded to find the one patch of dirt in the entire lush green lawn to sit in and roll his train around. He basically swam in the dirt.

Some younger kids came along to help him dig a hole with a stick and bury his train. I am sure their parents did not appreciate the lure of the dirt, but frankly as long as he was staying out of trouble I was happy.

Until he started throwing some dirt. And a little girl didn't appreciate that; retaliated by shoving his face into it, before I had completed my charge up to him to stop him.  

And these days? Jacob, once upset, gets stuck. Really stuck. And so I have a hysterical, crying, screaming autistic kid on my hands now, too covered (head to toe) in dusty dirt to make a fast escape.

So there I sit, surrounded by the other families trying not to stare at the spectacle on my blanket as I clean Jake off, pack up all our stuff. I make arrangements with our next door neighbors to bring Ethan back with them so he doesn't have to cut short his thrilling dodge-ball game to slink home with his autistic brother.

And I thank my stars that Ethan is in a wonderful (NYC public) school, that this is not a much judgmental crowd. My friend Sandra's daughter, kind and sympathetic, is offering Jake her treats to try to cheer him up.

Another mother whose children have issues, who is on the PA's Support for Special Needs Committee with me, comes by as we are nearly ready to go and marvels at my patience. I can't really take credit for it; it's the patience of the weary, of the worn down to a nubbin Mom that I am these days.

The tears are winding down, finally, as we board the bus up Riverside, only a few stops but far too far to walk my exhausted son. I am grateful for a nearly empty bus, as he sits down in the front "elderly & disabled" priority seats.

And you know, he IS disabled, even if it's invisible. We can rightfully claim those seats, but still, I'm glad that we're not making some old lady walk to the back, not engendering the stink-eye from the other passengers.

Because I just couldn't take that today.

Soon we will be home; he will be bathed, pajamaed and happy again.  Soon he will have moved on into ready-for-bed mode. But me?

I have left a part of me on that lawn where the other parents are playing ball with their kids or chatting with their friends. Where I am wiping the dirt from my sobbing, screaming son's limbs and wondering what is next.

What, my God, is next?


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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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