Birthdays come and birthdays go

This morning it was just me and Jacob, his brother away still, at camp; his father off at a comic convention in Chicago.  When he woke up at the ungodly hour of 6:30, I plopped down next him on the sofa. "So is there anything you want to say to me this morning, Jake?" Expecting.... I didn't know what.

"Happy birthday, Mom!" he piped up, the first of many birthday wishes from him today. Most delivered with a big hug and a kiss too.

It was odd not having Ethan around, as well. Though we had celebrated our birthdays last Sunday on camp visiting day -- his a week late, mine a week early -- it was still not quite the same as spending the actual days together.

But the biggest, oddest absence is, of course, my Mother.

This was the first birthday of my life that I didn't see or speak to her, she who has been there since the beginning, she who birthed me. It felt so odd, that sense of "something missing" hanging about me all day. That phantom limb whose faint ghost-pain keeps the bite of absence keen.

"Who else called to wish you Happy Birthday? Dan asked from Chicago when we finally connected to catch up.  "Not my mother" was my immediate reply.  "It just feels so strange to have a birthday without at least a happy birthday call from her."

"Well, it would be stranger if she DID call, wouldn't it?" He shot back, parrying with the gallows humor that those of us with dead parents use to lighten grief's load.

And yes, I laughed. And that was good.

And thus this was neither the best nor worst birthday of my life.  Fun was had. And the melancholy came and went, as it is now wont to do.

My brother-in-law and sister-in-law sent a luscious, glorious floral arrangement that took my breath away (and I then spent the day fending off the cat from devouring it).

Friday night I was taken out to dinner by a small bunch of good girlfriends.  We had a completely lovely evening, full of laughter and talk and wine and good middle-eastern food.  Conversations swirling on, we bounced from movies to kids to husbands to jobs and back around again... getting older, middle school transitions, summer reading lists... travels or lack thereof (one of us confessed to sitting on a park bench and crying whilst reading the Facebook status updates of another of us from Paris, and I could so relate).

Presents came: handmade, floral, yummy, bejeweled, and from Paris.  Many many hugs were given and taken;  my heart light as a breeze, the whole walk home.

And no, my parents never called. Not my Uncle Walter, either.

Never again.

And yes I know it's just the price of growing older, of becoming the eldest generation, as countless families before me have so evolved.

I don't like it.  I don't have to like it.

But it surely beats the alternative.

Telling stories

"Tell me a story about yourself, Mommy, tell me about you, Varda," Jacob asks at dinner the other night.

And although he only listens to the first three words of my answer before he's on to his next question, it's a start.

A big start.

He's been talking a lot about family lately.

"Mom and Dad, you're my family." He says, with an intonation halfway between statement and question.

"Yes we are!" I confirm.

"And Ethan is my brother." He ads.

"That's right, Jakey."

"We're a family!" I reinforce.

"Daddy was a boy? Now he's a man? I will be a man?" (Right on all counts.)

"Daddy and Mommy get married?" (Yes we did.)

"Get married you can kiss the bride?" (smooching sound effect included) (Yes, we did.)

"I will grow up and be a man and get married." (Dear God I hope so)

"Yes, Jakey."

And now, lately: "Mommy I'm going to marry you!"

And while I smile and explain that I'm already married to someone - Daddy - and he will have to find his own special person to marry when he grows up, I'm secretly glad he's said it while we're home. When he makes statements like this when we're out and about, I can see people doing a double take.

Unless Jake's been especially flappy or grimacey, they probably haven't expected him to be anything out of the ordinary, "passing" as it were, until the oddness of our conversation begins to become evident.

Also I'm mentally ticking off that box in my mind on the page of developmental milestones: Oedipal age - check!

In a "typically developing" boy that comes on about age four, and I seem to recall Ethan having similar romantic notions about me 'round about that time. And it also fits with where Jacob is in a lot of other ways, "socially/emotionally," as they say.

I kind of forgot how completely exhausting four year-olds can be...  the thousand questions, the need for constant attention, the wanting to do complicated things themselves, and then the tantrums when it doesn't work out as planned.

That all this four-year-oldness comes wrapped in the body of a 120 pound, 5 foot tall, near eleven year-old makes it all the more unsettling for strangers to witness. Though of course that's just normal for our family, things being other than they would appear to be at quick glance.

"Blue Bear needs his family to go to bed with him!" Jake firmly asserts at bedtime tonight. And so I round up the white, turquoise and sky blue bears that we have long ago designated to be his mother, father and brother (although sometimes it's a sister, depending on Jake's mood), tuck them in beside him, sing them all to sleep.

"Mommy, sleep with me!" says Jake. And though I know I can't stay, that my presence will be too exciting, will keep him awake, I lie beside him for a few minutes as he recounts his day to me, telling the stories as he remembers them:

"Mommy and Jacob went to the movies and saw Turbo. We saw the credits and the music and it was 20th Century Fox."

"And Jake and mommy went to the grocery store and bought three things." (More like 20, but who's counting.)

"And then I laughed too much and said the stupid bad words and Mommy got cross. I caused confusion and delay. Mommy is going to fire me."

"No Jakey sweetie, you needed to calm down because it was bedtime, and I'm not cross, not mad, you are NOT a bad engine, just a bouncy one. And you can't be fired."

I stroke his head, drop another kiss upon it. "And even when I do get mad, Jakey? I never, ever stop loving you, not even for an instant."

"Know this: I will always be your mom, you will always be my son, and I will always love you, forever and ever. Nothing can ever change that."

And we lie quietly for a moment.

One moment's silence.

And then I kiss him again and ease my way out of the room.

"Goodnight, Mother" he lofts at my back as I slip away.

"Goodnight Jake, I'll see you in the morning."

And I will.

Fired for Sure

"I. Need. To. Sleep!" growl-shouts Jacob when I go to wake him up this morning at O-dark-hundred. It's hard to get back on track after three day weekends, after school vacations - scheduled or unintentional like the week he just had off for Hurricane Sandy. But he's never been like this.

The whole morning, getting ready for school is filled with Jacob growling and sobbing and angry-crying and clenching his jaw, grit-grinding his teeth, overwhelmed by waves of frustration.

Besides this, his begging for more sleep, he is also demanding "My. Skittles!" a holdover from our struggles yesterday to curb the upwards spiraling trend of candy consumption in our house, engendered by the one-two punch of Halloween and hurricane.

"I'll get fired for sure!" he wails, his latest script - culled from Sponge-Bob - in response to any admonition I make, no matter how gentle.

Me: "Jake, please keep it down, everyone else is still sleeping. I know you're unhappy but you can't scream at 6 AM."

Jake: "Oh, no, I'll get fired for sure!" (cue sobbing)

And I am also pretty sure he doesn't know what "fired" means, afraid he has conflated it with the idea of things catching on literal fire - a frequent of occurrence on Sponge-Bob - and is somehow terrified of becoming actually torched, set aflame for his wrongdoings.

I repeat over and over that "being fired" means losing your job, and he doesn't have a job; that his only job is being my kid and he can never get fired from that. But I can see in his eyes it's just words washing over him, none of it sinking in. A conflagration of misunderstanding sweeping over all.

It breaks my heart when he is this unhappy. Shattered into a million glittery pieces. It breaks my heart that I get angry and frustrated with him, too, at these moments, watching the clock tick away knowing I have only so many minutes to get him dressed and fed, medicated and jacketed and downstairs, ready for the bus. Legally, they are allowed to wait for 3 minutes, and then they are required to speed off.

So I alternately scold and cajole, hug and hustle and DO get the kid on. the. damn. bus. 

And then after waving goodbye to my boy, still alternately crying and grimace-grinding, I come back inside to pick up the heart shards. And they cut deep, so deeply; yet another set of guilt lines, criss-crossing my invisibly battle-scarred arms.

Asking Why

Jake in the pool, Summer 2012

No, this is NOT a "Why Autism?" post.

Because that's just a tail-chasing exercise in speculation and futility. (My usual answer if pushed to spit one out is: just the right combination of genetic predisposition and environmental triggers, a complex process that is different in every individual on the spectrum. Epigenetics, dude.)

What this is, instead, is a post about hope. And awesomeness. And Jacob.

It's also long overdue, because what I'm about to share took place this summer, right at the end of our usual Berkshires vacation. Something I'm so excited about, been dying to share. But if you've been reading here for a while, you will recall that we returned home from vacation on a Friday evening at dinnertime in mid August, only to have the phone ring at 2 AM with the news that my mother had fallen in the nursing home, and was headed to the hospital.

So things got a little out of hand in my life at that point, and this post sat, languishing and half-written in my "zombie files" of unfinished posts that I really mean to complete and send out into the world someday.

And so this is that day...

There is something new afoot... a wonderful blossoming in Jacob's development...

At the boys' Aunt Patty and Uncle Jimmy's house in Great Barrington there is a wonderful pool. And Jake, given his druthers would spend nearly all day there. He is OK in it alone - with me right at poolside watching OF COURSE - but prefers the company of others for his frolicking.

So the day before our final packing and leaving day, we had all been in the pool together, having fun, playing our version of something like pool volleyball.  This involved Ethan and I playing against Danny, with no net and semi-contentious guesstimating of the center line and outer boundaries and which were actually point scoring shots. Meanwhile Jacob was parallel playing a game of catch with all 3 of us with a separate ball, right in the middle of it all.

I had begged a moment to myself to just float off to the deep end which was still bathed in sunshine. Dan had gotten out of the pool for a moment and was getting back in the water when Jacob looked up at him.

I heard Jacob asking his daddy one of his thousand incessant questions and I had piped in to help answer it when I suddenly realized -- hey! This wasn't yet another usual Jacob question, rhetorical and answer-already-known; his idea of conversation.

I stopped dead in my tracks.

What had I heard? I replayed it in my head.

Jacob: "Why are you not wearing a shirt Daddy?"

WHAT?

It was a genuine, spontaneous, curious and wanting-to-know-the-answer WHY question.

A why question!!!!!!

And, because it came out so naturally, I answered just as naturally and didn't even realize what had happened until a full beat afterward: "Because boys and men have the option of not wearing a shirt when swimming and Daddy makes that choice, like Ethan does." (Jake prefers a swim shirt.)

And then I had the biggest cognitive double-take I'd ever taken.

Wh-WHAT?

I suppose Dan's shirtlessness had just registered with Jake, and as my husband is not the type to wander around our home without at least a t-shirt on, Jake rarely sees his Dad bare chested.

And he wanted to know why. And he asked.

(Simple really. But momentous if you know autism.)

I honestly did not know, up until that exact moment, if I would ever hear this from him, if he really understood the meaning of "why" - an abstract concept if ever there was one; certainly compared to who, what, and even when.

And maybe it makes sense that it happened in the pool where Jake is so happy from getting its sensory input needs met, water giving up so much more information and pressure than air against his every millimeter of skin. So brain firing on all cylinders, chugging along, he made a new connection, a leap.

It hasn't happened since, but I have no doubt that it will.

And on darker days, stormy and difficult, I consciously choose to turn around, look back to this bright shiny moment and remind myself: patience. He will get this; get there, in his own way, according to his own internal timetables. Remember: it's all inside, waiting to burst forth, someday. When he's ready.

And until then?

Patience. Love. Support. Set the bar high. Never give up hope.

And be prepared to hear to a thousand basketball statistics, while listening for the next "why?"

Hopeful about the New School Year

There was a lot of change for Jacob to manage on this, on his first day of school this year. He is in a new classroom, with a new teacher, moving up a level, now in his last year of "elementary."

And even more significant, his school has undergone a transformation, now housed in a new, singular building instead of being spread out; no longer being special needs guests in a series of larger, typical, Catholic Schools....

Yes! it IS the 10th of the month. So to read the rest, come over to Hopeful Parents for my monthly post:  

First Day of School Highs and Lows

So go there now. Enjoy!

And come back here tomorrow for more.... whatever (I have no idea which of the 5,000 things squashing me right now I will be writing about, or maybe I'll try to lighten up the joint with some comic relief, you never know.)

And thanks for all the support that's been flowing out to me lately. It is heard, felt,  and much appreciated.

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.

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

My Mother, today (with Jacob)

Mom & Jake

I know the other day I promised a short post and then rambled on and on. But this time I really mean it!

Neither wordless nor quite yet Wednesday, though, so think of it as Pithy Tuesday or some such. (Nods to Elissa Freeman, she knows why.)

Today Jake and I went out to see my mother, while my upstairs neighbors rescued Ethan from a day of video-game-and-TV-watching boredom.

He has such a terror of spending a day alone (not ALONE alone, mind you, but alone as in NOT played with, being pretty much ignored by busy working parents) and is rather vocal in his displeasure with such arrangements. Especially when they involve proximity to his autistic twin brother.

Ethan does not believe me that no one has ever died of such a thing as boredom, and claims he will be the first. I have tried the "bored children get chores" gambit, but there is no yard work here in our tiny urban apartment, and all other housekeeping tasks would require MORE of my time and energy to teach and supervise him in than to do them myself.

So he empties the dishwasher and then it's pretty much back to entertaining himself with expensive electronics. (The horror, the horror...)

But today, my neighbor (whose praises I cannot sing enough) knowing all too well herself the eldercare-and-kids sandwich squash, took Ethan on for the afternoon.

Leaving Jake free to train out to Long Island with me, to spend some quality time with my mother. (Taking the train because the morning had been spent bringing the sadly falling apart old car to our lovely mechanic* to get a new tire, among other things.)

And we did. just. that.

And I didn't cry because Jake was there and I didn't want to scare him, but I held my mother while she cried about how reduced and sad her life is now, about how much she misses my father. Each and every day.

"He was my best friend," she tells me yet again, tears welling up in the good eye, and the bad.

A pair, they were. Bonded in love and friendship. Fifty one years.

I hated to leave her, when it came certainly time to say goodbye. "This is what I look forward to now," she said, apologetically, gesturing to the bingo game they were starting to set up in the dining room.

"Your mother is a good player, she wins!" piped up one of the other residents, declaring my mother a youngster, she a sprightly 96.

Yes she is.

Yes she does.

90 on Sunday.

We'll be back.


*If you're a New Yorker with a car, I love, and am happy to recommend our mechanic. Talk to Ralphie of NY Prestige Auto Repair, and tell him Varda with the ancient green Camry sent you. He'll treat you right. (No guarantees, of course, but that been my experience so far.)

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

Last year's fledgling, this year's eagle

My two empty nest days are over.

Tomorrow I am up early once again, driving out to Pennsylvania to pick Ethan up from camp.

So, with no time to write, and also Jacob much on my mind, as he spends his week at special needs sleep-away camp for the SECOND year in a row, I thought I would re-post my report from his first year there.

Last year I called him a "fledgling" as he was leaving the nest for the very first time. This year he has shown himself to be a veritable eagle, soaring high on his own wings, so easily.

Here is that post (written for the Hopeful Parents site) from last summer:

Jake & me at camp welcoming ceremony 2011

Fledgling

This summer, an amazing thing happened in our lives: our 9 year-old autistic son Jacob went to (ASD) sleep-away camp for a whole week in late August. And we didn't get that dreaded phone call to come get him because he was falling apart, unable to hack it. He had a great time.

This is the child who clung to me and sobbed when I left him at pre-school...

Who had to have a photo of me taped up in his cubby at Kindergarten, so the teachers could bring him over and point to it when he got sad and called out for me, reminding him that he would be going home to me on the bus in just a few scant hours...

The boy who every time we are out and about in the world doing anything, even something he truly loves, will ask, after a few hours, to go home please, telling me that he misses Coco (the cat) and his blue bear.

So knowing all this, why did we dare send him in the first place?

Well, we did it for him and we did it for us. For him because he is too dependent about things he actually has the ability to be independent with, but not the inclination; thinking that a week without us would kick-start some self-reliance, push him to take more responsibility for himself, where others are having expectations for him with the bar held high.

We also wanted him to have the confidence that comes with knowing he could spend a week apart from us and survive, and maybe even thrive.  We were hoping he would make friends, would try new things, that the experience would open up his life.

And also? I was terrified. Because while Jake may live in the body of a rather large nine year-old, emotionally and socially he is a LOT more like a four year-old. And you don't send four year-olds off to camp alone.

Also, the camp was a pilot program, being run out of a regular (Jewish) camp, at the end of their regular season. So this was an experiment on all sides. It was set up for "high functioning kids on the autism spectrum" ages 9 to 13, and I was afraid that Jake would have less language and be youngest both physically and emotionally.

We were teetering on the fence about this for a long time: was this the right thing to do, or should we wait another summer.  But I didn't want to underestimate my son, and I wanted to give him this opportunity to grow.

So, with trepidation, a few Sundays ago I loaded up the car with Jacob and a giant black duffle trunk containing a huge portion of his worldly belongings, a full set of medicine & vitamin packs and a detailed description of his GF/CF diet.

We had written social stories aplenty, made a special calendar that he could check off each day until it was the next Sunday and he was to come home. Blue bear came with, and he held him the whole ride up.

It was just Jake and I traveling North to the Berkshires together because his twin brother Ethan was traveling West to another state this same Sunday with their Dad, on his way to an introductory week of sleep-away camp, himself, along with a bunch of his friends. (Remember when I said this was for US, too?)

The whole ride up I chatted away to an unusually quiet Jake in the back seat, talking about camp and how today was Sunday and I was going to leave him there and come back the NEXT Sunday and pick him up. It was impossible to know how much was sinking in or not.

We arrived to be warmly greeted by a lovely staff. There were around a dozen kids in the program, and surprisingly about half were girls. There was a family welcoming ceremony with songs and prayers and introductions.

You know you're at Autism Spectrum camp when someone steps up to introduce themselves to a group and says "Hi, I'm Dan" and a voice from the peanut gallery calls out: "You're short!" (He was.)

Toward the end of the ceremony, Jake turned to me and asked, calmly, "Are you going now, Mom?" So I guess he understood, after all. I told him I was not leaving quite yet, that all the mommies and daddies would be kissing their kids goodbye at once and then he would go off with his counselors to settle into his bunk and begin the fun.

And when the time came, that's exactly what happened. A big kiss and hug, a wave, and goodbye, Jake. Wow. Someone had tears in their eyes, and it wasn't the boy.

I got a call the next day, and nearly had a heart attack because I got to my phone just as it rolled into voicemail. But it turned out to be a courtesy call, wanting to reassure us that all was fine, share that Jake had settled in well and was happily having fun.

Like all modern camps these days, photos posted daily to their website and we were able to see our boy swimming, dancing, sculpting, playing games, playing drums. Sometimes smiling and laughing sometimes looking a little lost inside himself, but never scowling, unhappy.

How strange it felt to not have him home, how many extra hours I had in my day to get things done, how unstructured my evenings became -- which was both exhilarating and vaguely un-mooring; that's another story for another day.

And then, when it was time to pick him up, he ran to Ethan and I beaming, happy to see us, but turning and waving goodbye to his new friends, too. A happy, tired boy, my little fledgling, one step closer to becoming the young man he will someday be.

NOTE: This post originally appeared on the group Hopeful Parents site on September 10th, 2011. Click HERE to read the original there.

Full Circles

"Tree of Life"

It's four am and I should be asleep.

I have a long day of driving ahead of me, up to the Berkshires in Western Massachusetts and then back home again.

I am taking Jacob up to camp.

It's the same special needs program at the sweet, wonderful Jewish sleep-away camp he went to and loved last year.

But still, sleep is not coming.

On top of everything else that is making me anxious these days, there is this:

Even though he went last year, even though he is a year older and his communication skills have jumped leaps and bounds over where he was a year ago?

My son Jacob is still quite autistic; still unable to reliably report on his activities; still as likely to answer "yes" to any and all questions asked of him, because he knows that answer makes us questioners happy, as opposed to trying to represent some sort of truth.

"Did you do math is in school today, Jake?"

"Yes!"

"Did you play basketball today?"

"Yes!" 

"Did you go to the moon today, Jake?"

"Yes!" 

(So my son is still an astronaut.)

And also, though he can say "I want..." this or that, will tell you "No, I don't like that!" if he hates something you've given him to eat or wear... still, he doesn't really know how to thoroughly advocate for himself yet.

I worry.

And I'm struck once again by how different my feelings were two nights ago, preparing to send his twin brother Ethan off to HIS one week sleep-away camp; the excitement, the certainty that he would be having a good time, easily able to let the folks there know what he needs, to take care of himself.

Twins. But so different.

<> = <> = <>

On road, in the early morning of what is sure to be a beautiful day, Jake is in the back seat and we are listening to pop music on the radio.

Driving up to New England, the highway passes through the Riverdale area of The Bronx; means I pass right by the exit I took to go see and take care of my parents for two years, in this, their old car, now mine. Today the exit sign for 254th street brings my heart into my throat, tears burning my eyes.

My mother so diminished and frail now, hurting and in the hospital. I am contrasting that with visions of my parents when they first moved here, back from Florida together, the two of them. So much younger, so full of life in 2005.

Seven years.

And he is now gone and she is in the endgame. And my children are now ten, double digits; on the precipice of launching into teendom. Life flowing in two directions all around me.

<> = <> = <>

It has indeed turned out to be a beautiful day, the finest of this whole hot miserable summer. I am sitting on a bench in the outdoor sanctuary at Jacob's camp. In the place where, as 14 year old, I had lain a mosaic; now long gone, replaced by a lovely tree of life ark.

This camp has changed over years since 1974, yet also so much remains the same. Walking past the old red barn, chills ran down my spine, memories shuffling past. Last year the special needs camp was held at this camp's sister location nearby. But this year: here.

Last year the opening ceremony was lovely, but did not evoke the past.

This year I sit in this exact same spot as my fourteen year-old self, and past and present swirled together like the light and dark sections of a mixed pumpernickel bread. As we sing the the words of the prayers, my arm around Jacob who is leaning deep, snuggled into my side, I am crying.

Growing up in non-religious household, going away to this camp at fourteen was the first time I was really exposed to Hebrew and prayer. That one summer, four and a half weeks, really, have remained a deep & meaningful time, are a part of shaping who I am.

Not particularly observant now, there is still, somewhere in my core, a rooted sense of Jewish self, an unshakable identity. And I know my one month here at Jewish sleep-away camp instilled that.

People have asked me why my near fervently non-religious parents had sent me here, of all places. And there was the official, and I'm sure true reason: I had always wanted to go away to camp, they wanted to give me what I wanted before it was too late, and this was the cheapest camp they could find.

But I also have to think that they somehow knew, maybe even subconsciously, that I needed this, needed to belong to something larger than just myself and my tiny nuclear family.  

And now I sit, my son at my side, my mother in a hospital bed, physically distant but ever on my mind. And in front of me, in this sanctuary, is a beautiful, sculptural Tree of Life.

A visceral image of what I sit in the middle of every day, these days, caring for the young and the old. Looking backwards and forwards.

But today, trying to be just here. In and of this moment.

And then my son hops up, heeds the call for campers to make their departure. He plants one more kiss on my chin, runs up the hill to the awaiting counselors. Just when I think he's off with nary a glance back, he turns, offers me a big smile and wave and happy "Goodbye, Mom!" shouted at the top of his lungs.

And he's gone.

Jake waving goodbye

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

More from Jacob's Batman files

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Enjoy.

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

(For more Jacob art posts, click HERE.)

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.

Setting Things Free

It has been mostly heavy here in my little corner of the bloggopshere, so I thought today I would lighten the load with a little picture essay of Jacob doing one of the things he loves best: setting balloons free...

Okay, so it's a white balloon in a white clouded blue sky, but if you look real hard you can spot the distinct little round sphere of balloony white in the photos.

I'm sure this whole thing is also a metaphor for something in my life. But I'm too tired to think of exactly what.

Good night, friends.

More heaviness tomorrow, but today?

Helium balloon light.

Enjoy.

An Autist and an Artist

Jake: "A Bad Guy from Iron Man"

I have been posting images of my son Jake's artwork from time to time here on my blog since he started doing really extraordinary work this past fall.

As I am way too tired to write anything of import today (first day of camp for Ethan - Jake in his 2nd week of no school/no camp vacation - trip out to L.I. with Jake in tow to both see my Mom & meet with her rehab team - there's nothing to eat in the house, so food shopping too) I thought I would fill in the unseemly blank space here and share some of the recent crop.

With all this free time on his hands, he's been busy!

"Bad Guy"

All Jake would tell me about him is that he's a "Bad Guy" and I have no idea which TV show or Movie he's from.

Personally I LOVE all the personality that comes out in the little lines around his mouth. And the sparkle of mischief in those eyes.

It never ceases to amaze me how Jacob manages to capture so much expression and emotion and character in the faces he draws. This would be impressive for ANY not-yet-ten year old boy, but for someone on the autism spectrum?  Truly, mind bogglingly extraordinary.

I love how it goes against the grain of all the common "wisdom" about autistic folks - how they are more interested in objects than people, don't pick up emotions, etc. etc. Because Jacob? Fascinated with other people, and clearly VERY tuned into facial expressions and what they convey.

Like I always say "You meet one person with autism... and you've met ONE person with autism." And Jake is SOME person with autism.  My favorite (but I am clearly prejudiced.)

"Peter Parker"

Jacob says this is Peter Parker - see the bit of spider on his arm that is cut off in this photo - but I think he looks quite a bit more like John Lennon, no?

"Two Face"

"Batman Bad-Guys"

Jacob is so clearly enamored of larger than life characters and stories. He loves drawing both superheros and their nemesises - the "Bad Guys."

"Harry Potter"

We've been having a bit of a Harry Potter film festival in the house this past week, as that's what Jake's been asking for, and I don't mind a bit as I have loved the books and enjoyed the films. This is definitely Harry from Book Seven, roughed up a bit and covered in either mud or blood - Jake was not quite clear on which - or both.

We haven't been watching in chronological order, but rather jumping around as Jake requests one or another specific film with a logic his own that I am not questioning, but rather letting dictate our viewing habits.  He has been commenting on Harry's maturation over the course of the series, going from asking "Is Harry a boy or a man?" to stating "Harry is a boy AND a man!" as he understands the films encompass some years of his life as he grows from one to another.

I think Jake is also thinking in about himself and how he will grow from a boy to a man someday. He's been talking about his impending birthday a lot, when he will turn TEN!

And with that thought I leave you. More tomorrow on... something. (Whatever my brain can muster.)

Good News (AKA things that don't suck)

A lovely day for a party in Connecticut

It's been up and down all week, all month, all year, and well, let's just say for some time now we've been riding life's rollercoaster, or if you prefer your metaphors nautical: cast adrift on life's choppy seas, pitching and yawing along.

Today, this very moment, I am feeling well weary of the negative, of feeling I am one popped stitch away from coming apart completely at the seams. So I will, here in my own little bloggy fiefdom, do as the old song says and ac-cen-tu-ate the po-si-tive.

So, hereforth and forthwith are five things from the past week that DIDN'T suck, that might even qualify as good news...

1. Getting Mom out of the hospital and into a nice suburban rehabilitation center was totally the right move. We brought her out to Long Island on Thursday. She ate a hearty amount of lunch, was in good spirits, worked on one of her word puzzle books for the first time in a month.

And when the cute male admissions nurse left the room after saying he needed to come back and do a full body check on her? Her response to me: "He's cute. He can do a body check on me anytime." You go, Mom!

And the reason why we picked this particular rehab center? I have been very (what's the diplomatic word here?)... disenchanted with the rehab options in NYC. And then, it turns out that my Aunt Eva, my mother's sister-in-law is currently also a short-term rehab resident at this facility, which is a mere mile from her home. Which means my Uncle Walter, my Mother's brother, visits daily.

And now that my Mom is ensconced two doors down from my Aunt, my Uncle gets to hang out with BOTH his wife and sister at the same time. Also my doctor cousin Jessie (Walt & Eva's daughter) has declared this facility "definitely nicer than most of these type places." Win-win.

2. Jake had his annual physical on Friday and an appointment with the doctor we see for bio-medical issues on Monday. We're taking his two week hiatus between the end of the school year and the beginning of camp-school (what we call his six week school summer program to make it sound more like what Ethan is doing) to get in all our doctor visits.

Both doctors thought he was doing quite well, were pleased with his relative calm and very impressed by his art work (I showed them samples).

And then when he had to have blood drawn he was pretty good about it. A little anxious beforehand and during, but no screaming. And then he was a little fascinated by the process and talking about it a lot afterward  - "What color was my blood, Mommy?" and "What did the doctor do to my blood, Mommy?"

3. On Friday, during his daily recess basketball game, Ethan made a 3-point shot to win for his team. And the week before, at his afterschool basketball program awards dinner he had been given a special medal for "Best Defensive Player of the Year."

As basketball is his great passion these days, both of these things made him inordinately happy.

4. Jacob is clearly missing school. Three days into his vacation he decided to have Blue Bear and all his other stuffed animals get on the bus and go to school. Once they arrived, he recited the daily schedule to them and then he led them in a bit of "guided reading." They ate lunch and played ball and then went back home to their mommies and daddies. But he told me they would be going back to school the next day! (And they did.)

Part of preparing Blue Bear to "get ready for school" was to get her dressed in some doll clothes I had bought for her last year, when Jake had insisted she get dressed when he did. So the second day of this game, after getting BB on the bus (Jake's pillow), the monkey bus driver drove on to the next pick-up point.

But once there, Jake declared of the penguin and cheetah who were waiting for the bus: "They can't go to school, they're NAKED!" Yes! Social rule understood: No naked school days!

5. We were finally invited to an annual birthday pool party I have been hearing about for years, the social event of the 4th grade boys world at Ethan's school. And today was the absolute perfect day for a drive to Connecticut and a pool barbecue bounce castle trampoline party. (And it was easy to bring Jake along to this, as the hosting family has a SN kid of their own as well, and is particularly lovely and understanding.)

We returned slightly sun kissed, tired and happy. Perfect.

<*>*<*>

I am not going to mention my worries about Mom's blood pressure being consistently low.

I am not going to talk about how despite it being cute, my mother's level of disinhibition is troubling, indicative of more cognitive changes afoot.

I am not going to share my disheartening realization late last night that last year's bathing suit was not going to fit, necessitating a last minute, early morning run to the full-priced neighborhood swim and lingerie shop where I got to beg them to help me find a suit that hid the fact that I do not have a bathing-suit-worthy body.

I am not going to fret over Ethan's being positive he is going to win a basketball scholarship to Harvard, and therefore doesn't have to put too much effort into his actual schoolwork.

I am not going to bring up my thousand fears and anxieties about Jacob and his future.

Ac-cen-tu-ate the po-si-tive.

Back to kvetching and bemoaning tomorrow.

ishes

A yellowish android

Today, I'm taking a break from reporting from my mother's bedside. Not that it's any different, any better there. I just can't keep talking about it day in and day out. My guts are too wrenched, they need a break.

So tonight, a little bit lighter fare; a few moments with the kids. Remember them? Yep, still got 'em.

Jacob tonight was showing me the pictures he'd drawn today, while he was home after school with Daddy. As is usual, he engaged me in conversation the best way he knows how: asking questions he already knows the answers to.

"Mom, what color is Vegeta's* hair?" I had to look to see if he had been drawn as a regular Sayan or a Super-Sayan this time. "Black honey, it's blackish."

"What is 'black-ish' Mom?"

Oy!

-ish is such an abstract concept, I think he's never going to get it, but I try...  "You add '-ish' to the end of a word to show how it is kind of, almost, but not quite all of something. You say 'whitish' about something that is not quite pure white, but on its way there, in the white family."  And left it at that.

And five minutes later...

Jake: "Mom, what color is Freeza's skin?"

I look over. "It's pink honey."

"Nooooo, it's pink-ISH, Mommy!"

And so it was.

(Never underestimate an autistic person's ability to learn.)

And then Ethan, on the loooooong way home from an East side doctor's appointment (Obama in New York = traffic from hell) decides to invent a word. Or rather, a new meaning for an old word, create some slang, as it were.

"Mom, let's make up a new meaning for the word 'Bagel' - OK?"

"OK." I say, game for any sort of game that does not involve a screen.

"How about... a special way you stab something with a sword?" He suggests.

"How about something non-violent?" I counter.

"It's a hug. A special, special hug where you wrap your arms around someone and give them a squeeze like you're the bagel and they're in the hole in the middle."

"THAT I like!"

"Give me a bagel, Mom!"

And I do.

I so do.


*If you have anything like a nine year old boy, you probably know who all these characters are. If not, you are without a clue. They're from the Japanese anime cartoon world of Dragonball Z - one of Jake's current obsessions.

I am linking this up with Just Write, because I just wrote it.

Autism’s Little Gifts

Note: In Honor of Autism Awareness/Acceptance Month I have been bringing some of my posts from the group Hopeful Parents site (where I post monthly on the 10th) back home to my blog. This post originally appeared there, in November 2011, and I am very happy to report that I am in a much better space with Jake now. Although elbow still a big problem = tendonosis!

Jacob, April 2012

For some time now, I have been in a fairly negative space about my son Jacob’s autism. I am feeling worn down by the unending nature of it all, the intensity of my nine year old son’s needs, especially in comparison with his typical(-ish) becoming vastly more independent twin brother.

But as this community is called “Hopeful Parents” and not “Cranky Whiny Parents” I don’t want to bring that negativity here.

So I thought I would take a moment to share 3 positive things that my son Jacob’s autism brings to the table. These may be small, even trivial things (and some seeming contradictory, the positive side of a presumed negative trait) but small gifts are still gifts, nonetheless.

And I would rather focus on being grateful than serve you another round of complaints today; tip the scales up instead of down.

So here is a short list of some of the gifts Jacob’s particular flavor of autism has bestowed upon him and us, his family:

1. Jake’s obliviousness has some decidedly useful aspects. Last night I banged my elbow, HARD, holding open the bus door as Jake disembarked (I have definitely done some damage as it still hurts badly today).

As I stepped off the bus and literally jumped up and down and then leaned on the bus stop wall as my knees buckles with the pain, I DEFINITELY let loose a stream of words Jacob should not have been hearing.

If it were Ethan with me last night? He would have been cackling with delight. I would now be hearing no end of his having caught Mom cursing, and furthermore he would likely be telling everyone all about it, outing me to the other moms in the schoolyard this morning. 

But Jacob? He didn’t notice the salty language one bit, offered me nothing but sympathy: “Mommy, do you have an owie? Are you OK? You need a band-aid, Mommy!” and patted my back, kindly. (And anyone who says autistic kids have no empathy can suck it.)

2. Jacob loves the movies so much he will see ANYTHING. Ethan, on the other hand, has a very short list of what he will watch and it has to fit into his idea of “male” and “Big Kid / Teenage-ish” and that is that.

But Jacob? While there are some (heavily advertised) kid movies he begs to see - and we do - he is perfectly happy to sit through pretty much anything in a movie theater, as long as there is popcorn and he can stay through the very last end credit. 

This means if I have dropped Ethan off on a playdate and there’s a vaguely-appropriate-for-kids movie I want to see (rated PG13 or below), I can bring Jake with me and we will both be very happy.

3. Jacob doesn’t judge people. He has no notion of race, of class, of “cool” and “uncool.” He notices that people are different from each other, but it is interesting to him the way the difference between two flowers would be interesting: the facts, no values attached.

The other day he asked a boy with a port wine stain birthmark what was on his face, and thank goodness that boy understood that there was no meanness in the question for Jake, just curiosity. So the boy answered in a very straightforward manner that it was a birthmark and had been there since he was born, just a part of him.

And that was it for Jake. Question answered. Let's play.

And that’s it for me tonight. Three little things I am grateful for. I’m sure there’s more. But I have to go ice my elbow now.