Showing posts with label The gods of autism are assholes. Show all posts
Showing posts with label The gods of autism are assholes. Show all posts

Wednesday, September 5, 2012

Picures and Stories

Jake, on the boat to Fire Island
There are pictures and there are stories.

A picture is a frozen moment in time. How things looked for a fraction of a second, over there, from here. And the story that goes with the picture, well, a story is another thing altogether.

There is the story under the story. Beyond the story. On the other side of the story. There is what went on before, what happened next.

I took this picture last week, when I took a day off from dealing with the dismantling of my mother's life and apartment, the dispossessing her of her things, to spend a day at the beach with my sons.

This move couldn't possibly have come at a worse time: the dog days of summer when the kids have no school, no camp and no friends around to entertain them; when everyone who is capable of it has gotten out of dodge. But here I was, trapped, sitting in an apartment in the City, sifting through every last bit of my parents' life together, downsizing my mother into a few boxes.

But that's neither here nor there, one bit of the backstory of this photo, which has so many backstories, so many threads all woven together to create this one image.

The moment is this: I'm on the boat to Fire Island with my two sons, a friend, and her twin boys, who are friends of Ethan's and have gone to camp with him this summer.

Day-tripping, we have taken the subway to the train to the taxi to the boat. But arrived with short moments to spare before it takes off, thus the desired "top deck" outdoor seats are all occupied and we are relegated to the likewise nearly full benches below decks.

Jake's got the window seat and he's loving it. I take this photo. Instagram it, and send it out over Twitter and Facebook.

Friends chime in: "Have a lovely day at the beach!"

That was my intention, a laid-back day of sand and sun and ocean and beach town. A one day mini-vacation in the midst of so much that is sad drudgery and emotional quicksand in my life right now. And the boys were to have "Fun Mommy" back for a day.

But that's not how the gods of autism saw it.

Because about ten minutes after this photo was taken?

Jacob stuck his head just a little further out the window... and the sharp wind blew his hat sheer off his head, tumbling it in the air, plummeting into the ocean below and increasingly far behind us.

And Jacob? He howled. He screamed. He beat the bench with his fists. He threw himself down on the floor of the boat and carried on an autistic meltdown to beat all autistic meltdowns. On a packed boat.

His grandfather was a Cantor. That must be where he got the lungs.

"My hat! I want my orange hat! I want my hat back!"

I heard this, well, I can't say "non-stop," because he did, eventually, stop for short whiles before working up to full steam again, but I heard this near continuously for the next six hours. And then regularly, with slightly longer breaks, for the next six after that. (And I am still hearing the occasional "What happened to my hat?" today, five days on.)

The full-bore screaming tamped down after the first hour or so, but the sporadic sobbing continued for the rest of the day. Along with demands that we go GET. MY. HAT. BACK!

Jake doesn't melt down often, but when he does, it's a wonder to behold.

I was really not fond of the stares. But didn't have the time or energy to focus on strangers. My boy was in distress, miserable and out of control. And I had to protect him. And help him (as best I could, but good lord my best was not good enough). And oh my god yes I have another kid, too, and thank god my friend just whisked him away with her two sons, and we met up with them an hour or so later when the worst of the storm had passed.

No mini-vacation. No fun mommy.

Just barely-holding-her-shit-together-mommy, once again.

And so it goes.

But the picture is lovely.

And all that it suggests.

The day that might have been.

But that would be a different story.


Just Write
I am linking this up with my friend Heather's Just Write

Friday, June 29, 2012

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.


Sunday, January 15, 2012

SOC Sunday: MIA via ASD

It's been a long time since I have hooked up with Fadra's SOC Sunday meme. I head over to catch today's link and what do I find? A beautiful new logo!


Thank goodness for SOC Sunday. Because that's about I can manage today. And barely that.

@@@@@@@

I feel hollow, scooped out; a brittle husk surrounding a great nothingness. And not the lovely nothing of Zen but the bleak nothing of having been shaved away until there is very little left, just a concave space surrounded by little curled up, crumbling bits of me.

I have been AWOL from my blog for 3 days now, the longest gap in a long time. Three days ago I started a post called "Another Day, Another (Autistic) Meltdown" trying to find the gallows humor in what I've been going through this week. But it just didn't come. I couldn't laugh. And I was tired of crying.

Jake has not been a very tantrummy kid. Until now. He's going through something. God knows what. Hyper-emotional. Is it the ugly middle stage of some forward progress, or his medication in need of tweaking? How can I know - they often look the same from here.

All I know is that for the last week, nearly EVERY evening (and some daytimes too) there is about an hour of crying and screaming. Because I have done something HORRIBLE like turned off the TV. And yes that's only one hour out of twenty four, but what it does is suck the life and energy out of the other 23 for me.

I;m really being unraveled by it. And i feel like a wimp, like a wussy because some families with autistic kids have been going thorough tihs for YEARS on end. And multiple hours / incidents per day, day in and day out. While I know (hope & pray, but mostly know because it has happened before) that this will pass here in our home, waiting it out is exhausting me.

Jacob WILL find his even keel, his usual sunny disposition will right himself once again. Because when he is not weeping he is still happy as a hundred proverbial clams, chatting away, demanding as usual I "Look Mommy!" at everything he is doing and listen to every thought that floats through his brain.

"Daddy is a man, Mommy"

"Why yes, yes he is, Jacob."

"He was a baby!"

"Yes, he was, Jacob. We were all babies once, that's how human beings - people - start out. Me, Daddy, you too. you and Ethan."

"I was a baby!"

"Yes, Jacob, a beautiful baby. And now you're my wonderful, big boy."

(SIGH)

And so it goes.

@@@@@@@

Still here? You've a brave soul.  Thanks for making it through the cave with me. And there's a reward: Tomorrow's post is funny, funny I tell ya!
 
New to SOCS?  It’s five minutes of your time and a brain dump.  Want to try it?  Here are the rules…

  • 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 picture link and let's hear your 5 minutes of brilliance...



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Saturday, January 7, 2012

Tough Night in Autismville

As any of you who tapped into my Twitter stream last night would know, Jacob had a really rough time of it at bedtime (as did I). I am still trying to figure out exactly what happened, to fill in the gaps, figure out the whys and wherefores, but how it manifested was this:

A one hour non-stop crying and screaming fest from 9 to 10 pm, followed by another hour of cycling through whimpering, tears, giggles, and more tears until about 11 when he finally fell asleep, exhausted. Poor guy.

And Ethan, of course, could not go to bed until Jake went down. He lay on the sofa, escaped - as much as he could in our small apartment - into his book.

Jake does not melt down often, is generally pretty damn happy. For a kid on the autism spectrum this is awesome, and I am grateful for it every day. 

But when he does?

Oh, my.

He is the unhappiest boy on the planet.

It starts slowly. His eyes well up, his lip trembles. I can see it coming, but an seemingly powerless to stop it.

Sometimes it's a brief shower, a quick downpour, and then it moves on.

But, more likely than not, he just has to go all the way through the maelstrom until the happy boy I know can emerge out the other side.

I am alone with the kids this weekend - Dan is still in Seattle - and so don't have the time or energy to write out the full long story of this and still get enough sleep, but I can copy and paste in my tweets from Friday night, so you can see a bit of what I was up against (in 140 character snippets):



And then, of course, today, Jacob woke up asking "What happened to me last night?" and "What happened on Friday, Mom?" and wanted to TALK all day long about his crying and screaming AND about swinging at school, when I just wanted to forget it and move on. Sigh.

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Tuesday, November 1, 2011

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.
 

Just Write


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Monday, June 6, 2011

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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Monday, April 25, 2011

When Autism Sucks (and then doesn't)

Autism doesn't suck every day. Sometimes it lets me in to see the unique beauty and vision of my son. But then there are days when it causes him real pain. And then I want to kick autism's ass to the curb.

Like two Saturdays past. Yeah, it was one of those days.

It started out with such promise. I had actually gone out on a date Friday night with my husband. We saw a movie (Source Code) in a real movie theater and it didn't suck, and we'd had dinner in a restaurant that didn't serve burgers & fries (because that's what the kids eat in restaurants).

I'd gotten some sleep. Sure, Jake woke up at 6:05 (really? on a Saturday? really?) but he happily entertained himself on the computer until 7:30.

OK, he watched the Mad TV episode "The Fast and the Curious" for the ten thousandth time. (Yes, starring Vin Diesel and Curious George, and yes, this is what's fueling the current renaissance of his obsession with Curious George.)

But I got to sleep until 7:30. Win.

Totally worth hearing Jake repeat "The Fast and the Curious" like a TV spot announcer all day long. I think.

So, Saturday. The day we'd long been awaiting had at last arrived... "Rio" had finally opened in the theaters.  I've only been hearing about it for six months now, and Jake was near giddy with anticipation.

We headed out to the movies, just the boys & me, since 3-D gives my husband a big headache and he successfully begged off (lucky bastard).

It was all running so smoothly, a little too smoothly, and so the gods of autism had to reach down and screw it up for us again.

End of movie. Ethan starts bouncing up and down, tells me he drank his whole water (why did I bring water?) and really needed to pee. If it were just he and I - no problem, if he had a friend with him -  no problem, if all four of us had gone to the movies - no problem.

Just the three of us - BIG problem.

The bathroom in this theater is not just outside the door, but downstairs on a whole other floor. Ethan, understandably, didn't want to go alone. I couldn't leave Jacob alone in theater.

And Jacob? Loves the music at the end of movies, lives for movie credits - maybe his favorite part of a movie. I knew it was going to be trouble, BIG trouble, to extract him before the last note of the last song had faded and the lights went up.

So picture us: Ethan doing the pee-pee dance as if life depended on it, Jake jumping up and down, dancing to the credit music. It has to be getting near the end of credits, so I move us closer to the door.

They're playing a big loud song, they're deep into the list of background animators, this MUST be close to ending, I know the final song is coming up, so I tell him Jake that Ethan HAS to go pee, that we HAVE to go to bathroom and we're going to wait until the end of this THIS song and then go.

Now we're halfway out the door. In fact, we're in the middle of the open doorway, like a large river rock, making everyone flow around us, and I just don't fucking care. I'm trying to get away fast after the penultimate song, to be on the escalator before first notes of the next, last song start up.

I'm praying to the gods of autism that this will work, but know deep down how cruel they are, that I'm surely fooling myself big time if I think I'm going to get away with this.

And indeed, three steps from the theater doorway the waterworks start.  And then comes the keening, the great big hiccuping sobs, as if he'd just lost the love of his life. Jake is sodden and sobbing and repeating over and over: "Now we're NEVER gonna finish this thing!" which is a script from somewhere, I don't really care.

And so focused am I on comforting my boy, I don't see or notice the stares, although I know Ethan does, shrinking from all the eyes upon us, from his brother and the scene we're causing as we noisily race down the escalator to the floor below, the one with the bathrooms.

"I'm sorry, I'm sorry" he apologizes profusely, and this, too, breaks my heart, that Ethan has to feel bad about needing to pee. I tell him it's not his fault, that he's done nothing wrong, but know that my words just float on the surface, won't sink below the sheen of his guilt.

I make sure that Ethan hears me as I tell Jacob: "I know you badly want to stay to hear the last song, see the end of the credits, but it is hurting Ethan's body to not pee right now, and his physical need to not be in pain has to come before your feelings and desires."

I know full well that to Jacob, even if he were not so gone into misery, this would not mean much: a jumble of words, abstract mumbo-jumbo. But Ethan needs to hear it, to know it is okay to come first, even if it makes his brother this sad.

We stay in the theater building a long time. And still Jacob, limp, spent, is crying as we walk out into the gray drizzle; crying as we get into the cab; crying as we walk into our building; crying as we settle back into our apartment; crying because, to him, he has not seen the movie because he has not seen every last little bit, until the last note of the last song has faded and the lights have gone up.

The gods of autism are assholes.

But then Sunday, the very next day, it's a whole different story.

Another day, another autism.

We're out on Long Island at my Aunt and Uncle's house at the end of a dead-end block with the fields out back. And my cousins are their with all their kids, too, so we are a wondrous gang of cousins.

Jake is in and out of connectedness, but with the space to do so, sliding the glass door open to run in and out of the yard at will. Delighted to go along with the gang on our shambling walk through the woods.

And then after the seder and the dinner, when guitars and ukuleles are brought out and folk songs are being sung, I pull a pair of pots out of the cupboard at Ethan's brilliant suggestion.

And suddenly Jacob is in the thick of things, drumming away, calling out to his cousins, gleefully a part of the music making, a member of the band.

(Sorry about the bad Droid shot, but my camera battery had died)
And so Sunday, autism doesn't suck, is just a part of who Jacob is, not getting in his way, may likely even be a part of his innate rhythmic abilities.

And I watch Jake, my awesome drummer boy, light up the room with his smile, light up my heart, always.

And the gods of autism are smiling, too, mercurial jerks though they may be; merciful, for one day.


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


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