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?"

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

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.

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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.

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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

Vacation plus Reality, with Pictures

A beautiful morning in Great Barrington

We are here on vacation, in a setting so idyllic it makes my heart zing every time I open my eyes and look around. My in-laws' beautiful Great Barrington house.

Boys actually playing together in pool = big win

And yet it is impossible to just relax and let myself be transported, for I am tethered to so much (phone calls, phone calls, phone calls about my mom). I didn't even make it into the pool yesterday. Though the boys did (all three).

3 guys in the pool

Coming back here, year after year, we have developed some traditions.  I spend as much time barefoot as possible - and take a picture of my feet in the grass, to remember this time by. Check!

I took some lovely portraits of the boys:

There was the 3rd annual watering of the car, an anticipated event now. This year Ethan did not fully join in, but he helped Jake fill the can. Cooperation at its finest. And the old beast is (marginally) cleaner, so there is that.

We had our walkabout in town, replete with a foraging session at the candy shop and a tour of Toms Toys, the lovely independent toy store on Main Street. I remember buying them Thomas trains there. (How fast they grow up. Sigh.)

Spinning the pinwheel outside Toms Toys

We found a local ball field and the guys had a game of catch. Thank goodness there was a basketball court there too.

Indoor diversions? Screens screens screens. Plus a 500 piece World Map puzzle Ethan and I worked on for 3 days. The Indonesian islands nearly killed us, but we got it done!

And then there is the new...

A this Greek restaurant, Ethan ordered the grilled SALMON off the kids menu and proceeded to eat it and ENJOY it. Anyone who knows what a picky and stalwart "kid food only" eater Ethan has been over the years is now probably thinking I was hallucinating at last night's dinner.

But no, it was real and he was thrilled that we were thrilled. As Jacob likes salmon, too, this means there is now something I can actually cook for a family meal that is healthy and everyone will eat. Not having regular family meals, the way I did growing up, the way I assumed I would in the family I created is a never-ending source of guilt and sadness for me.

This will make it easier to achieve, at least once a week. Salmon. Whew!

Ethan awaiting incoming ball

Underlying and overlaying all this classic vacation stuff, however, is my mother. All that I have to do for her in the next few weeks is a weight on my shoulders. How lonely she is in this week without my visit, a stone in my heart.

Compound that with feeling so sad and guilty that we never brought her here on vacation with us. Last year would have been the perfect year, after my frail and unmovable father had passed, yet when she was still hale enough herself to travel, to swim. Now is too late, she is so diminished.

I spot a hummingbird flitting amidst the morning glories outside the kitchen window and think "Oh, Mom would have loved to see this!" I would cry and cry about it, if I didn't need to make breakfast and put on my happy face for the boys.

Watching the kids cavort in the pool whilst in my PJs? Priceless.

So this is us on vacation. Just trying to have a little fun. To not think too much. And I'm determined to rest up a little bit before the shitstorm of caretaking that's going to hit upon our reentry on Friday.

Wish us luck, once again. Thanks. 

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.

Wordless Wednesday: What I Did on My Summer Vacation

For those of you who were reading me last year? This is going to look awfully familiar, because we were back at the in-laws' Great Barrington house again this year.

Which means a lot of swimming in the pool, Jake in love with the car, and me obsessed with the magnificent flowers in Patty's lovely garden. Wanna see?

Jake the fish

By the time I pulled out the camera, Ethan was already done, warming up in the sun

For those who doubt - see my husband does exist!

Flowers!

Big, beautiful flowers!

Ethan contemplating his new lefty mitt

Once again, Jacob delighted in watering the car

He takes his job very seriously

He even got Ethan to put down his glove and help out this year

Dude can get a little bossy

Jake supervising, Ethan pouring

Inspecting his work

Jake showing me where the hose is, to fill his watering can: "Go over THERE, Mommy."  If you know anything about autism, you know how important this photo is.

In a few years, Dude, in a few years. (Yikes!)

Brothers

Also? It was a really short trip this year. Rain, rain, rain, rain. But two glorious sunny days.

I could sit in this back yard forever

And then we headed home to pack up the boys for their week of camp. And for me to then drive back UP to the Berkshires 2 days later. This will definitely be known as the summer of the car. (And no, I'm not ever really wordless. Deal with it.)

And I’m linking up to Wordless / Wordful Wednesdays all OVER the place... at Angry Julie Monday... at 5 Minutes for Mom... at live and love...out loud... at Dagmar*s momsense... at Parenting by Dummies.


Looking for comments? To read or leave a comment, click on THIS post's title, or HERE, to bring you to the post's page view. Comments should appear below.

Missing my Father

Mom and Dad, summer vacation 1973

It comes up at odd times, this missing my Dad, now dead almost a year and a half. We're on vacation this week (hence the quiet blog) back at the in-laws house in the Berkshires (thanks, Jim and Pat!) and so there's that back-again-in-a-place-we've-been-year-after-year quality to everything here.

Last year my husband had to leave us on our own for most of the vacation to go attend to his ill, soon-to-die mother. Last year I was still raw and newly grieving my father, still recovering from the harrowing end. This year we carry two newish ghosts with us.

A year and a half is a long enough time that I no longer think of my father daily. He is fading from the front of my consciousness much the way he faded from his own life in his last few years. But some times, some places bring him back into sharp focus for me, the tang of missing sharp and immediate again.

At the end, though he was still alive, the ill, dying father was so present, dominating my life completely for the last five or so months of his, that the other man, my wonderful, wonderfully alive father was eclipsed, all but lost to me. I called him up to write my eulogy, but still, for a long time spontaneous thoughts of father brought up a husk of a man, lost inside his own mind, howling in senseless pain, needing to move on but still somehow stuck in his near useless body.

Now that the memories of those last, dreadful months are thankfully fading, I am finding myself bombarded at moments with visions of the father I knew and loved for my many years. It's a new phase of grieving I suppose, and also, I believe I am feeling my way into the relationship I will have with my father - my memory-father - for the rest of my life.

The Berkshires are a place I had been with my parents a few times in our lives. Also, most notably, they hold an important place in my family mythos: my parents met at The Music Inn in Stockbridge one summer, 53 years ago.

Also, summer vacations were important times for my family, full of happy memories for me, of time enjoyably spent with my hard working parents, having tremendous fun together.

Whatever the reason, my father is very present with me on this trip. We pass a sign on a building, nearly daily as we drive about Great Barrington: "Caligari & Sons Construction" and every time I hear my father's voice in my head making a joke about what strange kind of cabinets they would build.

We drive up the road to my old childhood camp (where I went only one summer, but was wonderful and transformative for me nonetheless) to deliver paperwork for Jacob's upcoming week away, and I am flooded with memories of my parents coming to visit on Visitors Day.

We go to dinner at a local tavern (burgers and fries for the kids, what a surprise) and there is an old man sitting with his family at a booth across the room. I keep looking up, seeing him, and for a moment thinking it's my father, and the next moment feeling the sharp tap just above my heart that reminds me it can't be, not ever again.

Hello, Dad. It's nice to have you with me again, if only in memory. Mom misses you something fierce, every day. I carry your sense of humor, your delight in the absurd and unusual, about with me every day of my life.

Becoming a parent has taught me much about how apples don't fall far from trees. I'm glad you were my tree, Dad. Very glad, indeed.

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


Looking for comments? To read or leave a comment, click on THIS post's title, or HERE, to bring you to the post's page view. Comments should appear below.

SOC Sunday: Happy Beachy Feeling

No preface tonight, just jumping into it...

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Home late after a wonderful day at the beach. Kids are gonna be tired at camp & summer school tomorrow. But? Not my problem (yay!) Though I better send an e-mail to warn Jake's teachers, because tired and Autism usually = behavior that can look like regression.

But, back to the matter at hand - the beach, the beach, we finally made it to the beach!!!! Just me and the boys and a friend and her son. a moms & kids day.

I am too tired to be eloquent tonight, to write the post that is starting to swirl through my head, will coalesce into something lyrical at some future date.

I have just enough energy to babble on about the wonders of a lovely day at the beach with my progeny who were not 100% annoying, and in fact part of more then a few magic moments.

We went to the beach today, and not just any beach - FIRE ISLAND. we were day trippers. (we will be forgiven). There were trains and taxis and ferries, and then...

We went into the ocean... oh yes! The waves were big but not too rough and so we faced them & got out with our dignities intact (no total trashes)

Lots of "swimming" and then sand time.

Any doubt Jake is a sensory seeker? Quashed when I found him basically swimming in the sand, pouring it on ihs own head for good measure (can you say needed 3x shampoo, yes.) This while Ethan & a friend helped some other kids defend their sea fort from the encroaching tide. (note to Ethan - nature always wins, sorry kid!)

Fun was had. fun, fun, fun.

And watching the kids walk back to town to change with bathing suits full of sand, like three little Groucho Marxes? Funny. Priceless.

There was ice cream. and potato chips. Also hummus (see, not all junk).

Of course the ferry ride back was packed. 7 pm on a perfect summer day, everyone was at the beach and weekenders were headed home, too. so we couldn't ride up top and Jake was disappointed, but lo, who should sit next to us but a good looking young couple with a... (wait for it) BABY!

Given Jake's current baby obsession was a total win. He was even happy to just watch her sleep after the rocking motion of the waves sent her down for the count.

And then a jam packed train and Penn station on a sunday night full of the happy sunburnt many and then HOME.

@@@@@@@

And now the children have been de-sanded and are sleeping soundly in their beds. And so, soon, shall I, too.

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I'm a Hopeful Parent again today

It's the 10th of the month, so my second post for Hopeful Parents is up today:

"New school, New year, New hope, New fear"

That wonderful new school I wrote about in June? Jake starts there in three short days after a long, long month of all-Mom-all-the-time vacation. We survived it. Barely.

Read my thoughts about this transition here, at the Hopeful Parents site:

Reading over my post, I realize it is way light on the "fears" part, other than my struggles to get Jacob with the program over uniforms (ugh, don't ask.) I guess that's because for once in my life I'm trying to not "borrow trouble."

I figure something's going to screw up, probably royally, but since I can't anticipate exactly what it will be, worrying about it isn't going to prevent anything. It's only going to put more gray in my hair, and wake me up with momsomnia, and who needs that?

So, I'm going with cautious optimism here. And I'll keep you posted on how that's working for me.

Hold the Cheese

This photograph of my son Jacob on summer vacation is the first lovely, natural photo of him smiling that has been taken in some time. I treasure it, and it will surely grace my computer screen and wallet for some time to come.  

For you see, Jacob is on the autism spectrum, and his interpretation of what to do when a camera is pointed at him, like so much about him, is aimed at, but quite clearly missing the mark for normal, like this:

He tries too hard. Waaaay too hard. So he ends up with a strange wide eyed or squinty grimace, yelling "Cheeeese!" at the top of his lungs, to boot. 

Jake used to have a warm, natural smile,

 then he started getting spacey in photos, 

 

and now this,

the balls-to-the-walls all out attempt at normalcy that looks like lunacy in it's current manifestation.  And I am glad I know (on most days, when I am having perspective) that's what this is, just the current station stop on the long haul from here to there. 

Right now Jake is so much better nearly every day in every way, and I feel awful, an ungrateful wretch for complaining about him. I feel guilty, very guilty at not feeling grateful every minute of every day for what a gift Jacob is, and how far he has come. But on that path from here to there, where Jacob is right NOW makes him so much harder to be around than back in the bad old days, when he was spacey and happy to live in his own little world.  

Because right now, Jacob, unlike so many other of his autistic brethren wants to interact ALL THE TIME. But he is still so inept at it, is still deep into the steep uphill climb on his learning curve, that an hour with Jake is more work than an hour at the gym, with the volume turned up to eleven. Because to have a meaningful conversation with Jake, you still have to carry 90% of the load. 

Jacob’s thoughts and intentions, his imagination and his humor are so much more sophisticated, so ahead of his language capabilities, there is constant correcting and interpreting to do. And then there is the answering over and over and over again of the thousand questions.

Remember three year-olds? That's Jake right now.  But he's a 75 pound, 4 foot 6 inch three year-old who will reach up to your face and try to make your mouth talk to him if you dare try ignoring him for a moment. And Ethan, Jacob's twin brother?  Really hates and resents having a three year-old for a twin.

There are parents with non-verbal kids who would give their right arms to have the problems we are having right now, I know that.  Believe me, I know that and try to remind myself of it every day when he is truly driving me around the bend. 

Because this year, due to the vagaries of the calendar and NYS in its infinite wisdom interpreting a 12 month program to equal a mere 6 weeks of summer school, Jacob has had a month, a full month of no school, no camp, no schedule, all-mom-all-the-time.  For a month, August 13th to September 13th, he has been, is, will continue to be mine, all mine.  And Jacob?  Right now?  WILL. NOT. SHUT. UP.  Really.

And that old mainstay of lazy parenting, television?  No go, there. Watching TV is not a quiet, passive activity for Jake, it is an invitation to engage in non-stop commentary and inquiry about what he sees on the screen: 

"Is that a baby?… it's a baby!.. What's his name?... What's the baby doing, Mommy?... is he sleeping?... the baby is sleeping...  SNOOOOORE (loud snorting snoring sounds here)... the baby is sleeping, mommy, he's sleeping... (laughing hysterically now)… WAKE UP, BABY!" (shouted loud enough to wake the upstairs neighbors probably sleeping-no-longer baby.)

I love my son, love him to pieces.  He is full of joy and light and love. He is the happiest autistic person I know.  He will skip down the sidewalk, because really, why walk when you can skip?  He slips his hand into mine, gazes into my eyes and kisses me ten times in a row, just because he can. He melts my heart on an hourly basis. 

But he also asks me every five minutes, all day long, every day, if we can ride the subway train to McDonalds and ToysRUs today.  Because we did it once, at the start of break, and he so loves Times Square.

Like a toddler, he doesn't know how to take no for an answer.  Actually, Jake doesn't even know how to take yes for an answer, so impatient is he in his anticipations that he will keep asking if he can do something I have agreed to, until he is in the middle of doing it. And then three minutes after it is over, he will ask to do it again.

He will grow, he will learn, he will be able to hold a thought in his head without giving it (loud) voice.  But right now this is where we are, neither here nor there, visiting station after station on our ride together.   

Next week Jacob will go back to school.  Next week my home will be much quieter, cleaner, and I will be able to get things done. Next week I will miss him all day long.  Because, you know, I do love cheese.