Taking it on the Road

The view from the Great Barrington house

Today I packed up the family into our old kit bags and we took the show on the road.

Not very far. To Great Barrington again, the Berkshires; these old, soft, rolling hills a verdant background to what passes for our family vacation these days.

There is always work going on in the background; laptops and tablets never far from reach.

There are always elderly parents to be worried about.

Two year ago, the morning after we'd arrived we got a seven a.m. phone call. And that turned out as well as you may have guessed. We passed most of our vacation with my husband absent, back in the city dealing with yet another hospitalization for his elderly mother. That one, actually, the beginning of the ending.

I am hoping and praying we will pass five days without an urgent call from my mother's home. That said I know that while my children cavort in the idyllic pool I will be watching them with one eye whilst spending hours on the phone, straightening things out around my mother's situation.

Such is life these days; my heart divided, always, rarely fully present with anyone (least of all myself).

There will be squabbles aplenty, as the boys alone together without any outside, third parties is powder keg territory. To say that Jacob so easily gets on Ethan's very last nerve is an understatement of  epic proportion.

To borrow one more cliche: they are oil and water.

Yet also somehow every time we come here a little magic happens in their relationship.  They have moments of fun together; cooperation, collaboration, bonds renewed. (And I quietly weep for joy over this when they are not looking.)

I would say it's Jacob getting his sensory needs deeply fulfilled by all that time in the water (he can and will spend all day in the pool) but it has even happened when we come in the winter too.

Already there has been a completely friction-free frisbee game at our favorite watering hole - the Route 7 Grill - where we dined tonight, pulling in road-weary at the end of our travels. (Just 3 hours, but we're NYC folks, not car people, to us this is a big trip!)

We love to eat there because of the fields out back behind the restaurant - an upscale, locavore, roadhouse of a place - where many a game of catch has been played while waiting for the food to arrive. The chef-owners also have a young son, so there are many yellow toy construction vehicles available to work the gravel pit, too.

Pulling up to the house, even in the dark, my spirits lifted. It is so large and beautiful, sitting atop a hill with a majestic view of distant hills behind. My in-laws generosity knows no bounds, inviting us to return year after year, in spite of the chaos our brood inevitably brings to their ordered peace here.

We had been planning to meet them for a late lunch before they returned to the city, but it just took too long to get ourselves ready and out the door with this and that and the other thing needing to be done (taking our show on the road requiring so much more than just tossing some clothes in a bag and hitting go).

The boys disappointment when they realized that in spite of being in their house we would not actually be seeing their beloved Aunt Patty & Uncle Jimmy was palpable. I felt bad, scoured my mind for what I could have done to get us up here sooner, mother-guilt never being far from reach.

But I need to let that go, let myself glide into vacation mode when the long days are filled with sunshine and pool splashes, and hopefully the boys' internecine tendencies will be once again blunted.

Wish us luck.

To Heaven and Hell in a day

Ethan & Jake in the Mist Zone

Today was the last day of Jacob's two week break between the end of school-school and the beginning of camp-school (what we call summer school around here so it can feel more like what Ethan does which is capital "C" Camp).

I had planned on having it be a very magical "Mom and me" time for him with special trips and activities, but then things with MY Mom went South and well, I have barely given my poor boy the time of day. Our "big trips" have been to go visit my Mom, first in the hospital and then in the Long Island rehab center.

Jacob doesn't mind of course, he loves to see his Grandma, and in fact, talks about her all the time right now, asks to see pictures of her from our trips. "Let me see Grandma sick" he requests, scrolling through my iPhone for all the recent images of her.

Today though, being the last of the last, I was planning something special. That is until a very loud thunderstorm woke him up irreparably at 5:05 this morning. With Jake out of school and Ethan's camp sporting a 9:30 start time, that meant that he and therefore *I* was up a whopping THREE hours before expected.

And me, seriously under-slept at this point means seriously cranky and no fun at all.

I was seriously cranky and no fun at all.

So instead of a day at a museum and playground, Jake had a day in front of the TV at his drawing table. He got to watch a whole Batman the Animated Series DVD and go though about a quarter ream of paper. He was perfectly happy.

I felt like a crappy parent, but what else is new these days.

We took an exciting trip across town to pick up some medication samples from a doctor for a drug that otherwise costs upwards of $175 a month on our crappy insurance plan, and then exciting trip back to the West Side in time to pick Ethan up from Camp.

It was HOT in New York City today, one of those real deadly summer scorchers we all dread. After pick-up there was a resounding call for lemon ices from the camp canteen so we indulged.

And right near the canteen and shaded sitting area was the "mist zone" - a misty sprinkler you can run through (or stand in) to cool down considerably. It was running full blast today.

Now, in the past, Jacob has had considerable difficulty with getting wet when not in his bathing suit and in a swimming situation (when he is then perfectly happy to spend the day submerged) but that has been changing lately (thank goodness!) and I was curious to see what would happen here.

And indeed, Jacob was seriously interested in cooling down and joining in the fun. What was most amazing was that he observed that many of the other boys had taken off their shirts and he asked if he could take his off, too.

And if you know anything about autism, you'll know how stellar this was, and that I was over the moon. My boy looking to what the other kids are doing and deciding he wants to do things the same way. And then having a great time doing so. (Autism Mom swoon.)

One happy boy

Much fun was had. Ethan was even in a generous spirit towards his brother and played in the mist with him a bit, horsed around under the shade tent.

Yes, that is Jake under that towel

And then? And then? I made the rookie mistake of counting my happiness chickens before they'd hatched. Because walking from camp back to Broadway to catch the bus home, somewhere in the middle of 111th Street, Jacob asked to watch TV when we got home and I did not say "Absolutely yes." I told he we weren't going to talk about TV right now.

Ethan had lost screen time for the rest of the day (don't ask, a third ignoring of my admonishment against doing something) and I didn't want to promise Jake TV right away until I could figure out how to wrangle keeping it away from Ethan at the same time.

And then some combination of the extreme heat and the earliness of the rising and the fickle gods of autism deciding their free pass had expired kicked in. Jake heard a "no" where I had said a "maybe" and he just lost his shit in a way he hasn't for a while.

Screaming crying wailing and shouting, much stomping and rolling around on the sidewalk. Snot pouring out of his nose and mouth and no kleenex or napkin in sight. (Autism Mom sob.)

Ethan stood about a half building away, pretending he didn't know us. He has reached the "age of much embarrassment" about his family, and having an autistic brother in full-on melt-down mode is, I would think, about as top of that list as you can get.

And it went on and on and I realized the idea of him calming down completely before we moved on was moot, so I walked a sniveling and occasionally still sobbing and shouting boy to the corner and we all caught a cab home.

And then it was of course dinnertime, but Jake didn't want me to leave him alone in his bedroom where the meltdown was continuing apace to go to the kitchen and make it (because of course by this time the idea of any TV at all tonight was completely out of the question, and he was all sad about THAT now).

Ethan was hungry and tired and wanting my attention too, and so I had two clingy, wiped-out kids and no screens to mesmerize them into relative calm while I got our meal together.

Eventually dinner was assembled, eaten; baths and showers were taken, pajamas donned. Jake was tucked into bed as early as possible (but not without one more teary mini-melt right as we were singing him to sleep).

And then, Ethan cuddled into me as I read to him from a book I'd been wanting him to try for a while - the first book of Diane Duane's "Young Wizards" series - and I got him hooked. He yelled "Noooooo!" when I put the book down, and picked it up to read himself to sleep a few short minutes later.

After trundling him off to his bed, I sat on the sofa in a deep mom-stupor.

What a day.

And I hear there's another one coming up tomorrow.

Planets

Venus & Jupiter in the sky - so NOT in New York City

Tonight Ethan and I ran a little excursion after dinner. Just the two of us. When we walked out the door it was not quite seven o'clock. These days that means a sky full of light.

Added to the ridiculously unseasonable warmth, us stepping out of a March eve in mere t-shirts, and I was hard pressed to remember it wasn't a languorous summer evening, but yet a school night, and thus we had to execute our errand quickly and hurry home.

Besides, I had promised the upstairs neighbors with whom I had parked Jake that we'd be back within the hour, and I sorely did not want to abuse my favor currency with them, would surely be needing to spend it again soon.

Jake himself was delirious to be upstairs with his "best friends" -- the four year-old sister of a pair of brothers who are Ethan's good school friends, and their white terrier, Mac, with whom Jake is nearly as obsessed as he is with our cat.

Ethan and I were on a mission, because I had failed in my mom-duties today: I was to have picked up a particular book for Ethan, another in the once-seeming-endless Warriors series that we are now close to outflanking.

The latest installment comes out in April, and the one before that will appear in paperback the same day, when we will finally snatch it up. I adamantly refuse to purchase these throwaway books in hardcover, so Ethan is going to have to get over his aversion to the library if he wants to read that last one anytime soon.

We absolutely HAD to go to the bookstore because he had finished the last Warriors book in our possession the day before, and thus we were now in the dreaded state of NOTHING TO READ.

I will not mention again the hundred wonderful books, sitting uncracked in our apartment; forlorn, unbeloved, rejected out of hand. Ethan is a picky reader. But for that he is now these past two years an avid reader, I am eternally grateful. I will forgive the undeserved scorn he heaps upon those poor maligned tomes, for the joy suffusing his being as he greedily devours the chosen volumes.

Ethan is in high, silly spirits as we walk the busy Broadway blocks to our local Barnes & Noble, and I am grumpy, nursing a throbbing elbow that may be a cracked bone or terribly distressed tendon. No way to tell until I visit the doctor, which I have such a deep aversion to doing.

I don't mind doctors and their offices, really I don't, feeling quite at home there from the countless hours spent looking after my elderly parents' health. And I kind of like peering inside my body, the few times I have myself merited scans or x-rays, mysteries revealed in dramatic, if ghostly, black and white.

But it's the time I dread; the time, the time, the time I do not have.

And so Ethan skips and darts around me walking down the street, as much crazed mosquito as boy, as I protectively cradle my elbow and brood.

"Look at all the people out in the evening!" Ethan proclaims with wonderment, and I dive again into pointless regret that we are not living anything like the life I had imagined, filled with evening family strolls and nighttime explorations of the city.

Jacob does not like to leave home all that much, and to be out with Jacob and Ethan together is most often a form of torture. I must steel myself for it. I must have some wealth of resilience in my bones, some stored reserve of calm and good mothering at the ready. There are days when I can and days when I can't and today was decidedly in the inconceivable column, my tanks in the red zone, surely running on fumes.

<^>^<^>

Mission accomplished, book in hand, Ethan and I pushed through the store's glass doors into a city become near night, the sky's blue glow nearly extinguished, the streets bathed in yellow-orange incandescence. 

Turning west to walk the two short blocks to Riverside and home, the brightest of stars appeared in the overhead sky. Not stars, planets: Venus and Jupiter blazing, blindingly bright in the deep cerulean sky that slices between the highrises, thankfully not obliterated. These two gods are in a much celebrated love fest this March, a conjunction the likes of which will not manifest again until next May.

And yet, while they appear to be quite close, kissing distance on the Ides, they are in fact not truly crossing at all. It's just an artifact of our perspective, the way they look from here on our own dear mudball.

They are in fact deeply distant from each other, Venus lying sunward from us, drawing us in toward the heart of our solar system, while Jupiter circles round us from the outside. To gaze upon Jupiter is to reach out toward the distant galaxies and the universe's noisy edges at the jagged beginning of time.

I do not like that my children are distant planets, each locked into their own distinct orbits, occasionally approaching but never truly crossing paths, both merely circling 'round me, their sun.

How I wish instead they were more like a double star system, like so many of the other twins we know: circling each other, at times closer, at times more distant but always in orbit, one about the other; connected, entwined, hurtling through space as one.

But I must, as ever, resist the siren pull of the "what ifs," of the dark matter that draws me to its crushing embrace.

I must instead stay here, in the now, in the track of my actual sons.

The one who lives on planet Autism.

And the one who does not.

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Ethan takes over my blog today (the world tomorrow)

Ethan

For a little while now, my nine year-old son Ethan has been wanting some time on my blog to call his own. We have been discussing the possibilities of a guest post; it's been simmering away in the back of my brain.

And then today there was a "publishing party" in his fourth grade classroom. All of the children had written personal narratives and this morning we proud parents got to read them amidst festive food and much excitement.

As I have mentioned from time to time here, Ethan has had issues with writing. Some deadly conflagration of perfectionism, ADD, having writer parents, compliance issues, left handedness, and who all knows what else has created a snarled mess that led to horrible homework wars for the past 2 years; led to a huge differential between his Math and English scores on standardized tests. (He can do math in his sleep.)

And this is not a child who has trouble expressing himself. He is full of ideas, has a huge vocabulary, reads up a storm. He will TALK on any subject until the cows come home, but ask him to write it down and he clams up, freaks out. The translation of thoughts and ideas from brain to page has been a minefield for him.
 
In an attempt to head things off at the pass, knowing that much writing would be required of him this year, we brought in some outside help: Ethan has a writing tutor. And we have not yet had a homework fiasco, though the beginning of his work with the tutor was rocky going,  

Also, it seems, he has a great classroom teacher. Because when we sat down to read his essay, we were blown away, and I knew I had to share it with you here (with Ethan's permission of course).

It is a very PERSONAL personal narrative. While many other students wrote about big moments in their lives, Ethan chose a small one, and not really a happy one, in spite of the (ironic) title. I don't necessarily come out smelling like roses in it, either. 

Read now and hear my son Ethan, in his own words:

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The Sunny Feeling of My Room By Ethan

I was coming home with my mom and Ellen (my tutor). My mom was in a rush to pick up my brother Jacob from his bus. I wasn’t in a hurry to pick him up. My brother has autism. It’s something that makes his brain work differently.

When we got to my house we waited in the lobby for my brother’s bus.

“Do not yell at Ellen,” Mom told me.
“Okay,” I replied.

Jacob’s bus came about one minute later. The four of us got into the elevator. I pressed five. We got to my apartment and went in.

Jacob kept annoying me.

“Mr. Ethan,” he kept saying to me.
“Stop it!” I yelled.

Mom tried to get him to go on the computer. But he said he wanted to watch television. She got him to watch television in my parents room.

We started working. Ellen told me to write two pages of something. I thought it was too much so I started to yell at her, “That’s too much!”

“No, it isn’t,” she told me. That went on for a while.

Then Mom yelled “Ethan, go to your room!”

I was in my room punching pillows. My teeth were clenching, my rage hissed inside of me like fire. I knocked a pillow across the room. I felt like no one really cared about me. I kicked the wood keeping up my brother’s part of the bunk bed. I somehow felt a little sad inside, like I was going to cry.

There was nothing to do in my room.  My room has yellow walls, a clothing drawer, a shelf with old toys, three old pictures from when I was five, somewhere around fifty stuffed animals, a window, and my bunk bed.

My stomach barked.  I hadn’t ate since lunch at school about three hours ago.  But I couldn’t get out of my room.  I waited but I was too hungry.

“Mom, can I please have a snack?’ I yelled from across the house.

“What?” she replied. (Probably yelling.)

“Can I have a snack?” I said, a little louder. She was coming into my room.

“Sorry, I didn’t hear you,” she said.

“Mom, can I have a snack?” I told her.  She offered me Scooby Snacks. I answered yes. I didn’t really want want them but I didn’t want to starve.

I head butted my bed while I was waiting.  She came back with a large green bowl of Scooby Snacks. They smelled like the sweetest thing on earth. But they tasted even better.

Just as Mom was leaving I thought I would ask her if I could play with some toys.

“Mom, come in here.” I called. She came in.
“What,” she replied
“Can I play with the toys in my room?” I asked.
“No, read your book,” she said, mad. I couldn’t. I can’t eat while I read, I knew.

So I replied, “I can’t eat and read at the same time. But I can eat and play.”

She came back with my book Young Samurai: Way of the Dragon. “Read this when you’re done eating,” she told me.

I did not listen to my mom.  I played with balls called Bakugan. I has just beaten myself for the third time when I heard Mom and Ellen talking.  I didn’t hear what they said but I knew they were talking.

I was half way through my Scooby Snacks, Jacob was watching television. I felt bad, I wanted to do something. I called my mom from across the house. She came in.

“Mom, can I please get out of my room?” I asked.
“If you don’t do what you did again,” she replied.  I felt fire in my heart, I squeaked out a yes.

Ellen was happy to see me back. We had about twenty minutes left.  Soon Ellen left and I started watching television.

When I look back to that day I know not to judge something before you do it. Also don’t get mad because you don’t want to do something. I chose this because I had never been in my room so long before.

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As I was reading this I kept thinking it read like the kind of blog posts I love: raw, honest, real. It is very revealing.

Other parents who read his story kept coming up to me and marveling at the emotion in it, the awareness of and ability to express his feelings.

It seems my little apple hasn't fallen far from the tree, after all.


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SNSS: Snapshot of Our Life

I am sorry to say, I don't have a SNSS guest for you here, today. There was a schedule mix-up. And then my crazy life...

My mother having been in the hospital for a week, and now in a rehab facility, ended up requiring hours and hours of my time each day, and has left me functioning on bare minimum efficiency (if even that) in the rest of my life.

And then there was the BlogHer Writers conference yesterday, which was wonderful and inspirational, but I didn't really have the time to attend. Even though I did.

All this leads to the matter at hand: I have neither a guest post nor time and brain cells left to write a new one myself. So what I thought I would do is to recycle a post of mine from this past spring that I believe not that many folks got to see... A snapshot of a day in my life with the boys together.

It's not pretty. The post's original title was "Fight Club." Read on:

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I hear the volume increasing, and my stomach tenses. Still, I ignore, stay turned to the task at hand, dinner in the making: skins thinly peeled from slices of ripe-bursting peach, rice steamed to softness.

And then the pitch rises again. And the thuds. And the keening. And the wail. The wail that cannot be ignored: Mooooooooooommmmaaay!

In their bedroom is a tangled mess of snot and confusion. Jacob with glasses awry. Ethan with hands on temples, shrieking “He head butted me, he head butted me!”

Jacob, alternately growling like a caged lion and laughing theatrically, a perfect rendition of a cartoon villain's world-destruction-anticipating cackle. Ethan now lurching at his brother with clenched fists and a growl of his own, “I’m going to kill him!”

And me? I’m in the middle again; sorting, soothing, trying to make sense of the senseless. I don’t even bother asking what or who started it, for these things just start.

Ethan is maddened by this idea, full of indignation and bluster, dead sure of his own absolute blamelessness in the matter. “He’s the worst, the meanest brother in the world! He took my Pikachu, he laughed at me when I tried to take him back!”

I could explain, for the hundred thousand and second time, that there is not the same purposefulness behind Jacob's actions as there would have been had Ethan been the perpetrator, that the motivator is not cruelty.

But why?

Ethan knows his brother has autism. He's never going to be happy about it.

Once again, the physical damage is minimal. The psychic, massive.

Ethan’s anger is a wildfire, burns blue-hot, consumes all in its path. He spits words at Jake through gritted teeth “Do. Not. Laugh. At. Me. Ever. Again!” Which Jacob, of course, cocooned in his autistic obliviousness to much that is normal human discourse, finds hysterical.

Jake love, love, loves his brother brimming full like this, is getting his lasered attention, for once. And just to ratchet up the annoyance factor? Begins to repeat his usual mispronunciation of his brother’s name in his most grating sing-song voice: “Oh, Eeee-fan” giggle “Eeeeee-fan” giggle.

If glares could kill, Ethan would be the only man standing.

Thoughts of dinner temporarily abandoned, separate them I must. Jake to remain in their room, Ethan to come with me into my bedroom; to float in the middle of my big bed, try to find his calm, regain his rudder.

Sponge Bob on the TV providing perfect distraction, I return to the scene of the crime, find Jacob rubbing the spot on his shin that will surely sprout a game-token sized plum splotch by bath time.

Mystery bruises his usual specialty, at least this time I know the culprit: bed-frame.

"Are you Okay, Jake?" I ask.

"Efan was MAD!" he says with glee.

"Yes." I agree, breathe deep, dive into an explanation made as simple as can be, but still fitting the bill. "When you took his toy he got mad. And when you laughed about it he got madder. It's mean to laugh at people when they are mad or sad, Jake. Do you want to be mean?"

And then he's got his contrite face on. The one he pulls up when he knows he's done something wrong, but can't understand for beans precisely what. "No" he answers, fairly sure that this is the right answer, the one that will grant him hugs and cuddles, absolve him of all transgressions.

And it does.

"Come here, honey," I say as he climbs into my lap, my eight year-old, eighty pound toddler.  I put some music on the radio and we sway together for a minute, but stomachs are grumbling and dinner sits, bereft, barely halfway complete.

Ethan's laughter trickles through my bedroom doorway, mood lifted by the magic of television, as I make my way back to the kitchen, to settle once again into the rhythms of cooking.

Then, to pick up the scattered fragments, to shake the jangly shards of our family back into a familiar shape.

Dinnertime.

Let's eat.

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That's all folks. A real guest next week, I promise!

Also? Last week's WONDERFUL SNSS guest post, The Bucket and the Mandrake, inexplicably didn't get any comments. Please remedy that by clicking over, reading and commenting. Thanks! 



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Sand Trap Weekend

This weekend I spent too much time caught in the sand trap, mourning the family I thought I should have instead of enjoying the one that I actually do.

And, truth to tell, it's pretty hard to enjoy my family right now.

Jacob is getting on Ethan's every last nerve, every minute of the day they are together. And Ethan is being mean to his brother. And there's only so much I can do.

One has Autism and the other doesn't. It is what it is.

I fled the coop for 4 hours on Sunday afternoon to attend a family event (for my husband's family, so he couldn't say no to watching the boys for the afternoon) and the boys just sat around the apartment with screens of various sorts on a beautiful day.

I tried, I tried, really I tried to get Ethan a playdate for the afternoon, but it didn't pan out, so our wonderful upstairs neighbors (who have nearly adopted the boy) having other plans, deposited him back home at 2:30, and the idea of going anywhere with his brother brought tears and moans and groans of "I HATE him, he ruins EVERYTHING mom!"

So there I was at a lovely old world, old school, top tier French restaurant in NYC eating and drinking up a storm with the female contingent of my husband's large and embracing, enveloping family (we affectionately call them the Borg Collective for a reason) but still fielding phone calls from home, pulled in two directions and fully present in neither.

My usual state.

This weekend I struggled to be a good enough mother. Struggled and failed. I didn't have the energy, the herculean energy it takes to pull on the happy face and make fun happen for our family.

We used to be able to just roll out and spend the day together. Jake was a bit odd, but often lost in his own internal little world. We had to make sure he didn't wander off, but for a spectrum kid he was pretty easy to take out into the world.

But now that he wants to interact and talk all the time, he requires a lot more energy and focus. He still loves going out, but now I have to be completely vigilant, to keep him from going up to everyone he sees and starting strange conversations.  And he so drives his brother 'round the bend.

I am sure some day Ethan will develop more distance, more compassion, but right now he is all rage and annoyance. And I don't want to be here in the middle of it. Not at all, not even for one minute of it.

And so I dread the weekends. I get a stone in the pit of my stomach as 3:45 pm on Friday rolls around, knowing  the boys are mine and more or less together until 6:45 am on Monday.

I ask too much from my friends, the mothers of Ethan's friends. I am always foisting him off on them. And if those kids want to come over, we're really limited to the ones with high tolerance for Jacob.

I am tired of whining about this, tired of complaining. Also I am worried that I am making my wonderful son Jacob sound like a burden, which he never is.  He is lively and delightful and full of light. But exhausting. Yes exhausting, always, too.

And the biggest issue is the dynamics between the two, so far from healed, so far from resolved. Maybe worse now than it's ever been, I can't really tell, I have no perspective.

So I separate and separate and separate some more, as much as I can. And still at bedtime tonight Ethan asks when we'll make enough money so we can get a bigger apartment and he can have his own room, asks if I could send Jacob away for a day "Send him on a trip to D.C., Mom." so he and I can have a day together, at home just us "because I almost never get time at home without Jacob around. "

And also the separateness feels just too separate, feels like individuals and not a family. I want a family unit, damn it, something that feels cohesive and whole. Not just this hole in my heart. Not a big one, but a small one, drippity leaking, draining the joy out drop by drop.

It's 4 am and I have not gone to bed yet. Sitting here ruminating and writing. Because if you don't go to bed, tomorrow never comes, right?

Damn, got that wrong too.

And I'm linking this up with Heather's "Just Write" Tuesdays meme at The Extraordinary Ordinary, even though it's not the lovely little slice of life I wanted to write tonight. Oh, well.


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Not my best

I am having a really hard time this week. A really, really hard time.

It's a limbo week, and that's where I am. Feeling stuck and rudderless in every way imaginable. This is the last full week of "summer vacation" and we have no plans and I have no spontaneity left in me. I was going to try to find somewhere for us to go this week, last minute and depending how we all felt.

We had some options: Vermont to my cousins, a few mid-week days at the beach. But I hadn't counted on Irene and her aftermath. Or on how much my boys after their first week away at sleep-away camp would want to just go home so much. To be, in fact, desperate for HOME.

So here we are.

I have mountains of laundry and unpacking to do, which I am way too slowly working my way through, thoroughly unmotivated but tired of looking at the suitcases in my living room.

And I am so not doing my best mothering right now, finding my boys on these beautiful last summer days mostly inside: one on the Wii, the other on the computer. We live in New York City. I can't just toss them out into the backyard. There IS no backyard.

And I'm on the computer, too. But I'm not writing as I need to, just aimlessly surfing and noting how many more comments and readers other bloggers have. Those by now completely irrelevant BlogHer recap posts that are almost but not quite done? Still undone. I just don't have it in me to finish them.

Until the upstairs neighbors came home late yesterday all of Ethan's friends were out of town. Jake still has no friends. (And I feel sad and guilty beyond guilt that I haven't been able to do anything about that yet.) So playdates aren't happening.

And the two of them together are just awful right now. Awful. Jake in Ethan's face, talking non-stop. Ethan screaming at his brother to shut up and leave him alone. So separate screens is the best I can do right now. Sigh. Biggest sigh ever.

And I am feeling how much this is not how I wanted to parent. I always pictured us as a minimal TV home. Envisioned myself to be the mother leading her kids on nature hikes, visits to the zoo, days at the beach, rainy afternoons spent painting and sculpting, reading books, exploring the city's museums together. Hanging out with other families, frolicking.

But then again I didn't count on autism, and boys who fight all the time, and my utter exhaustion.

When friends write about how they wish they had another week of summer and how much they are enjoying this relaxed time with their kids it just hammers at my heart. Because that is how I want to feel, it's how I expected I would feel. I DO love my time with my kids but individually, because going out or doing anything with them together is. just. awful.

And we are all together 24/7 until school starts right now. And I don't know how I'm going to make it another week and a day.

So I am one of THOSE moms, desperately waiting for school to start (Thursday the 8th for Ethan, Monday the 12th for Jake). And I hate that. I hate feeling this way.

And it's so my instinct is to hide when I feel like this, to disappear. And that's what I was planning to do. But then in my surfing this morning I saw all the tweets about folks who had linked up their posts with (this week's SNSS guest) Shell's "Pour Your Heart Out" linky.

And then I remembered that amazing fact that Aunt Becky had recently written about in a post, how writing actually helps us heal.

And then I thought "I'm a blogger, Damn it! I'm not going to curl up inside myself and hide away, I'm going to write about it."

So here's my ugly, all splayed out on the page... screen... whatever. It's not my best post. But it's all I've got today. So it will have to do.

(P.S. Updated this afternoon: It worked! Feeling much better now, about to drag the kids out to the park. )

I'm linking this post up to Shell's Pour Your Heart Out linky at Things I Can't Say (Thanks, Shell)


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Wordless Wednesday: Basketball Boys

 

If you're a regular reader of my blog, you will know that saying "My boys don't always get along." is an understatement on par of calling the sun a little bigger than a basketball.

There may be some basic personality differences and generic sibling rivalry going on, but really?  It's mostly about the autism.

One thing they actually agree upon (besides the fact the Sponge Bob is hysterically funny) is a love of all things basketball.

Today was a perfect June day. So when Jake and I picked Ethan up from his afterschool class at 5:45 (basketball, of course) there was still plenty of daylight. As we walked down the sidewalk and the boys were squabbling over possession of our one basketball I had a brilliant brainstorm: buy a 2nd basketball!

Conveniently, there's a sporting goods store a block from Ethan's school, and a decent-for-kids quality ball on 1/2 price sale - score!  The guy behind the counter even pumped up our old ball along with the new one. (Thanks, excellent Modell's cashier!)

And then, when you've just gotten a new basketball, you've got to go try it out, don't you? So back to the schoolyard we went.

Normally, I carry my good camera with me all the time, but today it was home, the battery charging in anticipation of Jake's special end-of-year school event tomorrow. So I whipped out my cell phone and shot away. Not, however, the best tool for fast moving action shots.

Between the 3-second delay between button push and shot, the long wait for upload onto the chip, the late afternoon brilliant sunlight and deep shadows, I never really got the fabulous "Basketball!" shot I wanted.

But the most important thing, that they were getting along, enjoying shooting hoops together? Happened, whether I captured it or not. So these will have to do:

Jacob, airborne

Ethan sinks one.

My boys, they love basketball.


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Fight Club

I hear the volume increasing, and my stomach tenses. Still, I ignore, stay turned to the task at hand, dinner in the making: skins thinly peeled from slices of ripe-bursting peach, rice steamed to softness.

And then the pitch rises again. And the thuds. And the keening. And the wail. The wail that cannot be ignored: Mooooooooooommmmaaay!

In their bedroom is a tangled mess of snot and confusion. Jacob with glasses awry. Ethan with hands on temples, shrieking “He head butted me, he head butted me!”

Jacob, alternately growling like a caged lion and laughing theatrically, a perfect rendition of a cartoon villain's world-destruction-anticipating cackle. Ethan now lurching at his brother with clenched fists and a growl of his own, “I’m going to kill him!”

And me? I’m in the middle again; sorting, soothing, trying to make sense of the senseless. I don’t even bother asking what or who started it, for these things just start.

Ethan is maddened by this idea, full of indignation and bluster, dead sure of his own absolute blamelessness in the matter. “He’s the worst, the meanest brother in the world! He took my Pikachu, he laughed at me when I tried to take him back!”

I could explain, for the hundred thousand and second time, that there is not the same purposefulness behind Jacob's actions as there would have been had Ethan been the perpetrator, that the motivator is not cruelty.

But why?

Ethan knows his brother has autism. He's never going to be happy about it.

Once again, the physical damage is minimal. The psychic, massive.

Ethan’s anger is a wildfire, burns blue-hot, consumes all in its path. He spits words at Jake through gritted teeth “Do. Not. Laugh. At. Me. Ever. Again!” Which Jacob, of course, cocooned in his autistic obliviousness to much that is normal human discourse, finds hysterical.

Jake love, love, loves his brother brimming full like this, is getting his lasered attention, for once. And just to ratchet up the annoyance factor? Begins to repeat his usual mispronunciation of his brother’s name in his most grating sing-song voice: “Oh, Eeee-fan” giggle “Eeeeee-fan” giggle.

If glares could kill, Ethan would be the only man standing.

Thoughts of dinner temporarily abandoned, separate them I must. Jake to remain in their room, Ethan to come with me into my bedroom; to float in the middle of my big bed, try to find his calm, regain his rudder.

Sponge Bob on the TV providing perfect distraction, I return to the scene of the crime, find Jacob rubbing the spot on his shin that will surely sprout a game-token sized plum splotch by bath time.

Mystery bruises his usual specialty, at least this time I know the culprit: bedframe.

"Are you Okay, Jake?" I ask.

"Efan was MAD!" he says with glee.

"Yes." I agree, breathe deep, dive into an explanation made as simple as can be, but still fitting the bill. "When you took his toy he got mad. And when you laughed about it he got madder. It's mean to laugh at people when they are mad or sad, Jake. Do you want to be mean?"

And then he's got his contrite face on. The one he pulls up when he knows he's done something wrong, but can't understand for beans precisely what. "No" he answers, fairly sure that this is the right answer, the one that will grant him hugs and cuddles, absolve him of all transgressions.

And it does.

"Come here, honey," I say as he climbs into my lap, my eight year-old, eighty pound toddler.  I put some music on the radio and we sway together for a minute, but stomachs are grumbling and dinner sits, bereft, barely halfway complete.

Ethan's laughter trickles through my bedroom doorway, mood lifted by the magic of television, as I make my way back to the kitchen, to settle once again into the rhythms of cooking.

Then, to pick up the scattered fragments, to shake the jangly shards of our family back into a familiar shape.

Dinnertime.

Let's eat.

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This post was written for The Red Dress Club's Red Writing Hood prompt: "Write a piece about a fight. What happened? Why? Who 'won'? What were the repercussions?" Can be fiction or non-fiction. 

And this story? Unfortunately, FACT. My life most days. 

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Sibling Day for Me at Hopeful Parents

 

Yes, why it IS the 10th of the month, so that means I'm over at Hopeful Parents today.

And, as it is weighing so heavily on my mind, I'm talking about sibling relations again, in my post: Not His Brother's Keeper.

I talk about the usual dreadful state of things between Ethan and Jacob, and also talk up my new guest post series, Special Needs Sibling Saturdays.  Not surprisingly, quite a lot of my guest bloggers also post monthly at Hopeful Parents.

I know you're used to me blathering on and on even when I'm just here to throw to my post over there. But today I'm going to surprise you all and shut up.

So go read me at Hopeful Parents, then come back tomorrow (well, maybe the next day) for more of my "brilliance."

Coming Soon: Special Needs Sibling Saturdays

Something new is coming to The Squashed Bologna...

Starting next Saturday, I will be hosting a series of Guest Posts on a theme that I have called: Special Needs Sibling Saturdays

"Why?" you ask.

Good question.

I have never had guest posts here before.  My blog has always felt so personal, so "me," it seemed strange to have other voices here.

And yet... and yet... I have loved guest posting at others' blogs. I have loved the feeling of community engendered on others' sites where there are regular guest posts, especially those with a specific focus, a series on a theme.

I have been especially inspired by these guest post series I have had the honor of writing for: "Small Moments Mondays" at in these small moments, and "Mommypants Moments" at Mommypants.

(It is no coincidence that Nichole and Cheryl are two of the three hosts of The Red Dress Club, the wonderful virtual group that is such a lovely and supportive community for writers, whose prompts have sparked some of my favorite posts lately.)

So I thought and thought about what would fit in here, and about what would be meaningful to me.

And I realized that I wanted to do something kind of new and different. (Because I can't just take an easy, tried and true path can I? Don't even bother to answer that one.)

I thought: "What is my biggest, consistently hardest parenting issue? What do I struggle the most with, what do I truly NEED a community for?"

And it came to me quickly... the sibling stuff.

Because Special Needs kids and sibling issues? An explosive combination.

Nothing makes me cry more. Not the death of my father. Not autism in and of itself. But this: the extremely difficult relationship between my twin sons, one on the Autism Spectrum, one not.

I don't have a handle on it. I have NOT figured out how to make it work in our house. There is yelling, there are tears. There are often two unhappy, lonely, angry boys and a mother who is at the end of her rope in our house. I am not proud of this. I am saddened, deeply troubled.

That my children mostly do not get along, that it is so hard for us to function as a cohesive family unit?  Is probably the single most consistent source of pain in my life.

So that's what I'm hosting a guest series about. Not what I do best, but what I do worst. Because that's what I need to hear other voices about.

I want to know how others do it, and how others don't do it.

I know there are families where the typical children are their special needs siblings best friends, function as mini-therapists.  I know there are families where they have had to make the heart wrenching decision to send a child with special needs off to a residential unit, so dangerous were they to their other siblings.

I know most families stories lie somewhere in between. And I want to hear all the stories.

Because in every family where there is more than one child, and at least one of these children has special needs? It deeply affects the family dynamic, the balance, the rules of the house. What a family can and cannot do together. If, how and where they spend family vacations. Every fiber of the day to day fabric of their lives.

I have written about this myself, here. And I realize that while I mention it in passing all the time, with phrases like "...dreading a four day weekend alone with my boys who get along as well as Tom & Jerry..." I have only ever written a full post about it that one time. I guess it's just too painful.

So I want to create a safe place here for people to talk about this. All of it. The good and the bad. The beautiful moments and the ugly truths.

To spark their thoughts on this, I sent my guest posters a set of questions:

How you handle issues that come up between your kids?  How do the NT (neuro--typical) kids rise to the occasion - or not - of helping out their special sib?  How you juggle vastly differing needs of kids, does someone usually get the short end of the stick?  

What you do when the fighting gets bad?  What you do to help your kids support each other? Does it work? Really? How you scaffold your SN kids interactions w/ their NT sibs? How do you talk to your NT kids about how the SN kid's needs affect or limit your family's experiences and activities.  How do they feel about this?

What you do when the typical sibs friends come over – what you say to them about the SN kid and what you do if/when meanness comes up? What you do when YOUR NT kid is leading the meanness towards their sib (yes this has happened here)?  What have your NT kids said to you about their SN sibs - the positive and the negative.

If all of your kids are SN, how do you balance the needs of the most affected one against the needs of the others and vice versa?

And most importantly of all: how do you FEEL about all of this?

But this is just a starting point. I know this series will evolve, that my guests will write about things I have not yet even imagined. And that's one of the reasons I'm so excited about it all, a chance to learn something, myself, on my own blog. I am near giddy with delightful anticipation.

So that's what's coming:

Special Needs Sibling Saturdays: a Guest Post series.

It's starting up next Saturday, March 26th, which is, not coincidentally, the day after my father's birthday. I know I will be looking deeply backward that day. I needed to turn around the next day and plant a foot firmly toward the future, and what better way than to start this series?

I hope you're looking forward to it, I know I am. The first posts are rolling in and they're wonderful. So stay tuned. It all starts next Saturday...


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Stream of Consciousness Sunday: Bloggy Blues

Sunday, how did you come around so fast?  WTF?  A week, really?  OK, if you say so... (I must be getting old, this time speeding up thing is getting really out of hand.)

OK, I'm going to stop promising "no more whining" like I did here last week.  Because you know it's going to happen again.  Like today.  Sorry I feel like crap.  I can't WAIT to be off the antibiotics, they really do mess with my head.

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I've been suffering bouts of blog envy lately, and I really don't like feeling that way. You know the "why does she have 1500 followers and get 100 comments on every post when I only have 170 and usually only get a handful of comments and she's been blogging for less time than I have" thing. Sigh. Resisting the urge to try to change my blog or my voice to become more "popular." time to shake my head clear and get over THAT.

And the funny thing is that while I've been running all over the internet reading other people's blogs and comparing myself to them? I haven't been doing what I love best, which is writing. My own stuff. DUH.

So I’m unhappy. That I’m not writing. So what do I do? Do I write? DUH, that would make sense, so no… Read more other peoples stuff. Go on Twitter and listen in on other peoples scintillating conversations and not join in but feel bad I’m not included. Check my sitemeter every 5 minutes and feel bad no one new came. Oh, someone came, but they stayed for less than a minute. Why do I do this to myself?

And thank goodness I got my period Friday night (sorry for the TMI, guy readers of which I have maybe 10) because that helped explain some of my blues.  I call the down day or 2 before the event my “seeing the world through shit-colored glasses” time.

And when I feel like this? Five minutes with the kids exhausts me. And don’t you know it’s school vacation week! And I would be looking forward to spending time with the kids, if we all could do the same fun things, if my kids actually enjoyed being with each other.

Actually that’s not the problem. Jacob loves being with Ethan, wants to play together all the time.  Ethan would prefer for his twin brother to be swallowed by a black hole never to reappear again. And I have a week of this to look forward to: Jacob pleading and pining and Ethan yelling and rejecting, unless I separate them, but there are two of them and only one me.

So I guess maybe this is also why I have been tiptoeing a little too much through the tulips of other people’s bloggy lives, and obsessing about truly meaningless trivial things like my blog stats lately: Escape baby, escape from the crap that is my life. Sigh.

Time to catch an hour of sleep before Sunday with the kids is upon me. I love them, I do, I just wish family time existed in any sort of easy way right now. And can I add?? Autism sucks!

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That's all, folks! 

New to Stream of Consciousness Sundays?  Here's the skinny:

• Set a timer and write for 5 minutes only.
• Write an intro to the post if you want but don’t edit the post. No proofreading or spell-checking. This is writing in the raw.

You can do it, too!  Click on the link and let's hear your 5 (or so) minutes of brilliance...

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Mom is not allowed to be sick

Sorry, to be whining again.  It's just a cold, a basic stupid rotten head cold.  I feel like crap, but can scrape myself off the floor to function when I have to; the children are fed and looked after.

But I've got laryngitis, barely any voice, and what there is is so raspy that no one can hear me on cell phones.  How much I call out to the boys from one room to another?  I have no idea until I can no longer do it.

I need to traipse into the living/dining room from the kitchen to communicate anything and everything, including such bits of wisdom as: "take your feet off your brother" during dinner.  (Because, being in NYC, we cannot actually eat in our narrow cooking-only kitchen, and so the 10,000 times I need to get up during dinner to get something or other?  Means walking a long room away and back.)

And now, Ethan?  Came into the living room this afternoon telling me he felt oh, so cold when the room was rather warm.  Hand to forehead brought suspicions, thermometer checked, and yes indeed: 101.6. Damn.

And wouldn't you know it?  This afternoon was to have brought to fruition a plan months in the making: a play-date with a classmate, long discussed, finally scheduled.  Oh, well.

And I'm actually hoping Ethan has my head cold, and not the horrible stomach virus that is going around these parts.

Evidence is pointing towards the positive: Motrin taken, he's dropped down into the 90's and not shot back up yet; he still has somewhat of an appetite, downing a mere five instead of his usual ten chicken nuggets for dinner.

Jacob may or may not succumb.  The ridiculous amount of vitamins and supplements he takes appears to have been successful in giving him an iron clad immune system.  Nine-tenths of the time, when the rest of us are wheezing and sneezing?  Jacob sails through with nary a sniffle.

Which is all for the best, as Jacob ill is not a pleasant sight to behold.  He is the picture of misery, not understanding why he feels the way he feels, and cranky and much frustrated to boot.

But healthy when we are ill?  Jacob is annoyingly cheerful; chatting away, asking to have his turn with the thermometer, asking for medicine when Ethan gets his, clearly not wanting to be left out of anything.

OK, the children have been fed dinner, and are now happily being mesmerized by evil but oh, so addictive Japanimation on the television.  I am going to climb under the covers for an hour or until the fighting starts, whichever comes sooner.

Tomorrow it will be one year since I started this blog, my "blogaversary" as it were, and I hope to have a more philosophical post up then.  Until then?  To quote my friend Stimey: urgle, burgle, blech...

Not Today

I had a deep, thoughtful post half-written for today.

I had a plan: I was going to finish it up, polish it up and send it out into the world mid-day while my husband took the boys off to see the supposedly execrable but male-bonding worthy "Green Hornet" movie (I hear many things blow up for absolutely no reason).

But this is not to be.

At 5:55 this morning Ethan tiptoed into my room.  His stomach was hurting him, and he was feeling really crappy again.  He didn't quite throw up, but almost.

And?  As as added bonus?  All the commotion woke up his brother, Jacob, too.

And you know how well they get along.

And Jacob this morning is in a wonderful, joyous bouncy mood.  Which means he literally will not stop talking.

Not even for 15 seconds.

About the same things: Batman and the upcoming movie schedule.

Since 6 AM.

And when Ethan yells at Jacob to "just. shut. up!" I scold him.

But in my head?  I'm yelling it, too.  And then feeling guilty.

Sigh.

And?  Yesterday was my first day really back in the world.  I took Ethan to school in the morning.  I went to the doctor for my post-surgical check-up appointment.

(He removed the wound dressing, I got to see the stitches in my belly button. Yes I still have one. Allayed my fears that had sprung up when I read an account of a laproscopy gone terribly wrong with the poor woman ending up with a navel-less belly like a classic Barbie.)

I even actually went on a date with my husband for the first time in a month.  We kept it short and simple.  I figured sitting in a movie theater was pretty much the same as sitting on my sofa.  So we saw True Grit.  Really enjoyed it.

But by the end?  I was really hurting.  I'd conveniently forgotten that I don't actually SIT on the sofa, I LIE on it.  And sitting up engages the abdominal muscles.  Two hours of that?  Too long for me right now.  Damn.

Once again I'd let my ambitions get the better of me.  Feeling a little better didn't mean all better.  And today I'm paying the price for over-doing it yesterday.

And yes, I have a sense of perspective.  I know these are small bumps in the road, minor disturbances.

My husband will take Jake to the movies.

And Ethan may perk up later today, feel better and go off to his scheduled play-date with his best friend while my husband takes Jake off to his beloved basketball program.

But I also know that what I will be doing if I get a moment to myself is sleeping, being horizontal, non-abdominal-muscle-engagingly prone.

Healing my body.  Not writing.

Another day.

Not this one. 

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With Heavy Heart

As I talk with my friends about their winter vacation plans and travel about the blogosphere reading people's holiday posts, it is with a heavy heart.  I am looking down the barrel of these next ten days with dread, not the warmth and anticipated snuggly joy that abounds elsewhere.

Life with Ethan and Jacob is not easy these days.  They have no relationship with each other, we do not function as a cohesive family unit much.  A moment here, a moment there, is all.  Otherwise everyone is in their own individual bubble with me running back and forth between everyone like a crazy person trying to mold some cohesion where none naturally flows.  And then the fighting, the constant fighting.

Two eight year-old boys, both lonely, under one roof together.  One unable and one unwilling to play together.  And me weeping because of this.

So these long days need to be planned and filled and turned into something other than easy and relaxed, which is what I so need right now as my body continues to twinge and whinge at me and I wait anxiously for my immanent surgery.

I need to farm Ethan out to any of his friend's families who will have him, so he can have time with friends and away from his autistic brother.  And Jacob?  Needs to be played with, entertained, challenged, have as much structure as possible imposed on these odd, structureless days.

And my heart so isn't into it.  I love my son Jacob to pieces, but it is very hard to be his mother right now.  All he wants is all my attention all the time.  And an hour playing with him leaves me drained, limp, spent and turning on the TV with deep guilt.  I know it is bad for his brain, but it makes him so happy and I need the break.

Autism is really hard on the holidays.  On vacations.  Any time that families normally come together with any sort of flow and ease, anticipating relaxed unstructured time, is, instead a time of struggle for us.  I am tense and unhappy, feel put upon and resentful.  And then I have to purge all this and put on the happy face, because my kids deserve my kinder, better self.

Every happy family I glimpse out in the world or on my computer, laughing, playing, just being together drives home to me how much we are not that family.

And this year especially, it weighs so heavily on me.  This first year without my father, my husband's mother.

And with all my gall bladder troubles and the attendant days spent in medical mishegas these past two weeks, I have had neither time nor energy to properly plan this break.  And we cannot go away, I can't risk another attack far from home.

We are set through Sunday, and then?  I will be scrambling to keep my boys anywhere near happy and entertained.

Ethan needs play-dates, Jacob needs someone to engage with him and structure to his days.  My husband needs to finish the sad task of clearing out his mother's apartment, the one she had lived in for his entire life.

And me?  I need some time for me, to rest and to build up my reserves to be ready for my coming surgery.  I also need some happy, relaxing family time.  And I will be getting neither.

There will be a moment here.  A moment there.

And that will have to do.  It will do.


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Tomorrow's Another Day

I am a blogger who has, in the recent past, tagged a blog post "having a craptastic day" and who warned people at the beginning of said post that there would be whining and ranting involved.

Well, today I'm having another bloody one.  But I don't want to share that with you, don't want to bring my crappiness here, to my blog today.  I'd like to leave it behind, for just a little bit.

Yesterday I was light as air and posted a fun, funny post.  Today, that seems a thousand miles away.  Today I have had a blinding headache all day, and children who do not get along.  But that is all I will speak of this. No whining today.

Some days?   They suckity suck suck, and I just have to keep my head down and barrel through.  And remind myself: tomorrow will be better.

My son Jake, the one on the autism spectrum, tends to use scripts, stock phrases he picks up (from books, TV, other people) a lot.  In fact, a speech therapist once described him as "learning English as a second language, when he doesn't have a first one."  And that seemed apt.

You know how when you're in a foreign country and don't really know the language and you have something to say, a need that must be met, a thought or feeling you want to convey?  You go to your little handy dandy guide book and try to find the most appropriate phrase, one that most closely fits the situation, even if it's not... quite... 100%... all... there.   That 's Jake.  Completely so at the beginning.  Less so now, but still, quite often, the scripts are handy.

For a while every night at bedtime, after I have given Jacob my final kiss and said my final goodnights, as I am closing his bedroom door I would hear him call out to me: "Goodnight, Mom, tomorrow's another day" in a lilting voice.  I have absolutely no idea where he picked that up.  To my knowledge, he has never seen Gone with the Wind.

He has since moved on.  I still do get that particular goodnight, but only every now and then.  And I miss that dose of sweet, innocent optimism on a nightly basis.

So, having nothing positive to say tonight that is original, shiny and new, I will instead pass on these words of wisdom and hope from my son Jacob.  I will borrow from his phrase book for tonight.

So I say this now to you:

Goodnight, Dear Readers. Tomorrow's another day.

(consider yourselves tucked in and kissed)

Mourning in the Morning

This morning the sound of Ethan happily playing with his sleepover friend, Sage, would have brought me much happiness, except, except…. it made me cry. Made me cry because I almost never hear this in the morning in spite of Ethan having a twin brother. Because of Autism. 

Ethan is an 8 year old boy: they talk with their friends, play games that involve a lot of conversations, pretending and planning and even their battles are all words. “I am using water smite on you now”.  

And Jacob, he screeches like a monster and throws toys.  It’s not that he’s non-verbal, he talks a lot (actually all the time, but that’s another long post to come), but doesn’t have the ability to keep up with the rapid flow of thoughts and ideas exchanged in typical play.  He can carry on a conversation, IF it’s on his terms, his topic, and Ethan has just not signed up for that job.

Most mornings start like this… Jacob: “Ethan wake up, are you awake, Ethan? Eeeeeethan? Are you a robot? Ethan, are you a robot? Wake up, Ethan! Are you a robot?” Ethan: “SHUT UP JACOB!!!!!  Mom, Jacob is bothering me, make him stop, make him shut up, he is the stupidest most annoying meanest brother in the world!!!!!  Moooooom!”

And some days I am sanguine, take it in stride, separate them (as much as I can in a small apartment), get them (separately) busy, feed them (different breakfasts), get them ready for (their separate) schools or camp and summer school and their (separate) busy days.

And other days it’s hard.  The woulda-been, coulda-been, shoulda-beens bite me in the ass and I mourn the family we are NOT, the family time we just can’t have, the ease of two kids the same gender and age that I see taking place in the families of twins we know and hang out with.

This morning hearing Ethan so happy playing with his friend brings it all back, the dashed expectations: My sons will not be lonely they will have each other. Instead, today Ethan is happy and Jacob is lonely.  Most days they are both lonely, Ethan bothered, angry and Jacob hurt, rejected. And I can’t fix it, I just don’t know how, I feel like a failure as a mother. 

Maybe if I got up at 5 am to get everything ready so in the mornings I didn’t have to be busy, I could just facilitate and scaffold their interactions with each other. But what even then? Ethan would still want to play games whose sophistication is so beyond Jacob, and Jake would still be too loud, too physical, too repetitive for his nimble minded brother, so what then?  They could play successfully for 10 minutes, with me sculpting every moment, maybe, on the good days, and then, back to business as usual for the rest of the morning? And I got up at 5 freaking AM for that? Um, no thanks. 

I read a lot of true and fictional accounts of families with siblings both on & off the autism spectrum, trying to feel not so alone, trying to get into Ethan’s head, figure out how I can help make it easier. And you know what?  They all suck.  

Not because they are not wonderful, they are, especially this one: Rules by Cynthia Lord (who obviously has a kid on the spectrum herself). But because all those boys and girls (and for some reason it’s usually girls) while they may have difficult moments, when push comes to shove, they are unfailingly loyal to their Autistic brothers. Their parents describe them as their kid’s best therapist. And that is so far from happening in our house, I end up feeling worse rather than comforted, and no more clued in to what I can do to turn things around than before.

So, the sounds of happy morning playtime in my house are so rare. They do happen from time to time, when Ethan is feeling generous and happy and Jacob is being calm, his sweet funny self flying free, not frustrated by Ethan’s rejections.  

A few weeks back, on a lazy Sunday morning, they took all their stuffed Pokemon dolls -- I mean SOFT ACTION FIGURES (don’t want to trample boy egos here) -- and brought them up to Jacob’s top bunk, put them to bed and woke them up (Jacob’s oldest and most beloved pretend-play scenario) and had a whopping good Pokemon battle.  

I held my breath, tiptoeing, smiling, puttering quietly around the house so as not to break the magic yet.  Like an amateur juggler holding too many balls, I knew they were going to start dropping soon, but for just a moment they were all gloriously in the air, and all was right with the world.


NOTE: This was actually written 2 weeks ago on July 11th, so that’s the “today” of the post, not to confuse anyone who might have been at my boys birthday party today, actually, and be going “huh?”  I am just so overwhelmed these days, I wrote & then lost this until now, searching for something to throw up quickly to not be completely lame having gone a month without actually posting anything.

Victorian Gardens Magic

NOTE: This post originally appeared on the sadly closed NYC Moms Blog.

This Saturday I ignored dire predictions of afternoon thunderstorms and took the boys off to that tiny jewel of an amusement park that wings in to perch in Central Park’s Wollman Rink for the summer  (Memorial Day through mid September): Victorian Gardens.  We’ve been taking the boys there a few times a summer since they were three, and though they are nearly too old, too big for the pint sized thrills therein to be found, we’re squeezing one, maybe two more summers out of the place, because there’s some sort of magic there for the boys and I’m not ready to let it go yet.

I remember the first time we went, it was the whole family, all four of us: me, my husband, and the boys.  They were still tiny, not yet quite three, and we rode all the rides with them, grown ups with our bent knees approaching our ears. They loved being on the really little kiddie rides, which were just right sized droplets of thrill for them.  By the next summer, at four, our services were only required for some, not all rides (just the "really scary" ones), and my husband and I stood by in trepidation as Ethan took charge of his twin brother Jacob, making sure he stayed safety belted and didn’t try to climb out mid-ride.  For you see, Jacob is on the Autism Spectrum, and at four was still very un-awake to the rules of the world, needed a minder at all times.

This was my husband’s last foray with us there, however, because while they may be named “Gardens”, it’s mostly a misnomer.  But really, who would come to “Victorian Hottest-shadeless-circular-patch-of-sun-blasted-cement-in-the-city”?  Oh, yeah, it’s surrounded by Central Park lush, but inside: bake-a-rama.  And my husband, well, he melts in the heat. Hates heat. His idea of perfect weather: Seattle. In winter.  So we no longer torture him by making him come drip with us. Because no matter what the forecast, and this Saturday it was “cloudy and cooler with a strong chance of thunderstorms”, it’s ALWAYS hot and humid when we go.  The kids don’t care and I just sweat and bear it because they always have such a wonderful time.  But the whirling fun, while terrific, isn’t the magic, it’s the co-operation. Because you see, my boys don’t always get along, and lately it’s been like oil and water.  And that’s on the calm days.  On the bloody ones, it’s more like oil and flame thrower.  The full history is too long and complicated to go into here, but let’s just say that having a twin on the autism spectrum is really hard.  And being the autistic twin of a brother you love, who currently wants very little to do with you is really hard, too.  Yet somehow, at Victorian Gardens magic things happen.  The boys don’t fight.  They ride rides together, laughing.  Every year Jacob needs less and less help, by now just little bits, here and there, and here, at Victorian Gardens, Ethan is willing to provide it, patiently.  It’s actually something approaching a miracle.  

Thinking about writing this post in praise of our little magic patch of amusement, I stumbled upon something I had written last summer about this very phenomenon. Here it is: 

I am absurdly happy watching my sons be happy today on the flying swings.  Ethan does not hate his brother today.  When I go in to help Jacob onto the apparatus, Ethan shoos me away saying “I can help him, I want to help him, I can do it” so I back off, let him be the big, helpful brother to his twin.  Something I never envisioned 7 years ago when, large as an overripe fruit, I lay about waiting to bust open and birth the twins.  An only child’s fervent fantasy: my children will never know loneliness, they will always have each other.  They will not spend countless childhood hours in front of the mirror practicing funny faces, creating a playmate, an other, out of the reflected self.  I never counted on Autism, on this: that Ethan and Jacob are and are not twins.  Womb shared, room sharing they are.  But partners and age mates not now, not yet, questionably ever, though I’ll never say never.

I still tell the story, though it would horrify him now, of Ethan and I in the car when he was 4.  We had dropped off Jake and I was driving the 10 blocks to Ethan’s pre-school.  He was in the back seat, when he said “Mom, I wish that Jake and I both had had Autism or we both didn’t have Autism.” Tears jump out of my eyes “Why honey?” “So we could be the same and go to the same school.”  Glad he’s facing the back of my head so he doesn’t catch the tears streaming down my face now.  So understanding and compassionate at 4.  Jump ahead 3 years to the fighting, hitting, screaming “I hate you” – where is that sweet boy?  Buried under years of longing and disappointment turned bitter and angry.  Bitter and angry at 7 – how did it come to this?  Too big a burden to be a twin but older brother, yet I ask him to shoulder that load every day.  


And so it continues this year: we have a day of (mostly) peace and fun, stay out till late, watch the first fireflies come out in Central Park as the boys scramble up and down rock "mountains" on the long walk home. And I quietly hold my breath, waiting for what tomorrow will bring.