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.

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.

Tales from the LTYM Rehearsal

On Sunday, March 11th, waaaaay too early in the morning (especially considering Daylight Savings Time had JUST sprung us forward an hour!) we gathered the tribe and held our first rehearsal in a small theater on Manhattan’s Upper West Side.

While Amy, Holly and I had met and spoken with each member of the cast, for everyone else it was their first time laying eyeballs on each other, a first date, as it were. And in spite of it being rather much of a blind date for most, it couldn’t possibly have gone better.

Except for the part about standing in front of the building, waiting in the cold for the theater owner to realize it WAS Daylight Savings Time and he had to be there to let us in an hour earlier than he’d THOUGHT he had to.

However, it seems that shivering together helped to create an instant connection (the bonding powers of shared adversity?) as when we repaired to a local coffee joint to wait in relative comfort, a cohesive unit was already forming.

After taking care of introductions and practical business at the coffee shop, we were able to enter the theater and begin to read our works aloud. And then, there was magic.

Even though we were our own audience, reading just to each other, the power of our words shone through.

We were all different, our stories were all unique, our own. And yet in the telling and the listening I could see, could feel the glistening thread bonding and binding each to the other. The quilt of our show was being stitched together, each story a square of specific beauty, creating a wondrous whole that is much more than the sum of the parts.

I’m not going to tell you what our stories were. That’s the wonderful surprise, folks. You’ll hear them on May 6th, if you can come in person, or soon thereafter on the ‘net.

But I can share this: we laughed, we cried, we were moved in all the ways storytellers can move us. And when it was over we left so impressed by the company we were keeping, by the power of our words, and the brave people who are willing to share them.

I was beyond proud to be a member of this troupe, and I know for certain that everyone else in that room felt the same way.

<^>^<^>

And if you want to hear specifically how others felt about the first rehearsal?
Read our director Amy’s blog post: how do you stop the whole world?
Read Kir’s blog post: Just Be Enough: The Circle

(And yes, this is the SAME post here and on the LTYM-NYC site. Call it being efficient, not lazy, please.)


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March is the Cruelest Month

I am so very, very happy to be incredibly busy this month. So busy in fact, that I don't have time to ponder and wallow.

Because March, the last two years running?

Has nearly done me in.

This time last year, even though my body was officially "healed" from my first ever surgery (goodbye, gall bladder!) my spirit was still struggling. I was not yet nearly "myself" again.

And suffusing that whole winter, laying over it entirely, were ghostly tendrils of the previous winter when my father had been busy dying, and I had been completely consumed by caring for him and supporting my now widowed mother.

So last March was the final crushing end of Year One Without a Father. That year of sad first anniversaries, of remembering and reliving so much awful.

As I was grinding through it, trying to keep my head above water, everyone told me I would be astonished at how much better it gets, with time; that year two would be nothing like year one.

And they were right. Thank all the powers that be, they were right.

Two years ago, today, was four days out from Dad's passing. I was witness to his emaciated, worn out body, fiercely clinging to the last shredded remnants of life.

His incredible strength that I had admired throughout his life now a liability, he was really ready to go, longing for release. But his stubborn, fighting, never-say-die spirit won out. Over and over.

Until it didn't.

March to me is my parents' anniversary on the 1st. My father's death on the 13th. And my father's birthday on the 25th.

Two years ago, he nearly made it to 93. This year, it would have been my parents 53rd anniversary. He would have been 95.

And yet thoughts of him, of my Annus Horribilis, bubble up momentarily to the surface, then sink back below.

I am busy.

Busy with life.

Rising with my children. The thousand tasks involved in their care and feeding and shepherding throughout the day.

Laughing at their jokes. Supervising 4th grade homework. Cheering at their basketball games.

Busy preparing for Jacob's annual IEP meeting, for which "the letter" came in the mail yesterday. Always giving the shortest notice legally allowed, it's in two weeks. Scramble. Scramble.

Busy producing the New York City Listen to Your Mother Show. an amazing endeavor that is heating up white hot in my life, now that we are cast and less than two months out from showtime. (May 6th - mark your calendars!)

Busy doing everything that needs to be done for my nearly 90 year-old mother.

It's good to be busy. I am grateful. I complain (it's my nature). But I'm not REALLY complaining, you know?

Two years ago, I was in the thick of death. There is such a surreal quality when I look back to that time, the awful and beautiful of it, all wrapped up together.

And while "beautiful" seems a strange word to be found here, describing death; now, two years out, I can see that part, too.

It was a gift to be able to be there with my father, and for my mother. To lie beside him and gently, so gently, stroke his back so he could continue to sleep, comforted by the last simple human connection of touch.

At the end, at the very, very, very end, there is no future. The past is a distantly receding dream. There is only the bright white light of NOW. And then it goes dark.

Sitting in my father's light, at the end of the end, was a gift, with its own beauty. And now, two years out, I am beginning to see that, beginning to treasure it.

And so I run about these busy March days, grateful for the life that flows through them. 

Starting year three.

And waiting for April, and true spring to come.

I'm linking up to Maxabella's I'm grateful for... because I so am.

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LTYM-NYC has made a busy bee out of me.

Noticed it was a fairly quiet month on my blog this February? Yeah, me too. Sorry. I’ve actually been very busy, just not HERE.

I’ve spent a lot of time THERE, working on the NYC Listen to Your Mother Show, gearing up for its first annual appearance this upcoming May. (The 6th at 2pm at the JCC. Go HERE for details. Tickets on sale soon – but not yet.)

This week? Three glorious, wonderful, exhausting, grueling, uplifting, wrenching days of auditions. Sitting in a little room with my wonderful partners - the director, Amy of When Did I Get Like This and associate producer Holly, The Culture Mom - being amazed and humbled by the outpouring of stories brought to us.

And, of course, this being New York City where space is at a premium, we held our auditions in a big professional casting and rehearsal studio. Which was… interesting, as big Broadway shows were being cast and / or rehearsed all around us. Which meant that big Broadway voices were belting out showtunes accompanied by boisterous piano plating throughout the audition process.

You’d think a place like that would have better soundproofing wouldn’t you? Well, think again.  But we got really good at tuning out all the distractions and tuning in to our people.

And I do think for some of the folks who were not performers (maybe especially those who had traveled in from distant ‘burbs and beyond) it was a thrill to be waiting for their auditions in the same halls as professional actors and dancers with Broadway credits to their names.

And now? Auditions are DONE!

And now, the very, very painful choices need to be made. 

We saw over 50 writer/readers. (What were we thinking?!) Wonderful stories flooded our ears and eyes. Woman after woman - and two men - came in and laid their hearts and kishkas on the table (that’s “guts” for you non-Yiddish speakers).

We could probably just drop all of the auditioners names in a hat and pull out a dozen or so and have a great show. But you know we’re not going to do that, right? We’re going to think and talk and agonize; and think and talk and agonize some more.

And sweat blood, as we move names from yes to maybe and back again, our hearts breaking a little each time, as we sacrifice an individual piece we love in order to make the show stronger, as a whole.

Creating flow, creating a beautiful quilt in the pattern of motherhood, one lovely square at a time. (Full credit to Amy for this metaphor. It has been very useful as we work together to choose the big and little stories that we’ll stitch together to create our show.)

Thank you so much to everyone who bravely came forth to share your stories with us. We appreciated each and every one of you. We loved hearing your stories. You truly were ALL stars.

And if you were thinking about coming to audition and didn't; if you thought "Why would anyone want to hear MY unimportant story?" -- please think again.

Come see our show on May 6th. If you live in another city or area of the country where there is a LTYM sister show, by all means go see that one! If you can't come in person, watch the videos when they come out shortly thereafter.

And next year?

Grab your story.

The one that scares you because it is so honest, because you are so "out there" when you tell it.  The one about which you think "Can I really say this?"

The one that makes you laugh or cry, yourself, when you read it.

Bring it to us.

Stand up and read it out loud.

We're giving motherhood a microphone.

The good, the bad, the beautiful and the ugly.

We want your laughter and your tears. We want your unvarnished truth.

Yes, YOU.

Bring it on!



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Magic

I don't believe in magical thinking, really I don't.

Well... not much at any rate.

But, sometimes?

I do believe in fairies, I do, I do, I do.

Blog fairies, as it were.

And the gods of Autism, who are sometimes merciful.

My last post, When Autistic kids get bored..., was about Jacob, and how I had resigned myself to patience about his morning waking habits; about how after nine long years he STILL waits for us to come to him.

And then?

The day after I posted it, I woke up to Ethan at my bedside, telling me he was going to be up for the day now. When I asked if Jacob was awake too, he said he didn't know.

I asked him to go check, and he shouted back from their bedroom (right around the corner from ours, it's a small apartment) "Yes, he's awake!"

"Well, tell him to get out of bed and come see us." I suggested, hopefully, for probably about the 100th time, knowing it was fruitless, that I would need to abandon my cozy warm bed and go retrieve him shortly.

But, wait... what was that I heard?

The sounds of a 100 pound nine year-old climbing down his bunk-bed ladder?

YES!

"I'm coming to YOU!" Jakey announced, very proudly, as he bounded into my room. I gave him a hug and kiss, directed him to take care of morning bathroom business, told him I'd meet him in the living room in 15 minutes.

And the next morning?

He got out of bed BY HIMSELF while Ethan was still sleeping, and came to me. Still a little hesitant with the newness of it all, still unsure it was the right thing to do.  "I'm coming to you, Mommy?" he asked, as he walked into the room..

"Yes!" I said. "Oh, my big boy, I'm so proud of you for getting out of bed by yourself and coming to me without waking Ethan!"

And then he climbed into our bed for a big happy cuddle, and then I took him out to the living room and we started our day.

And, yes, it has happened every morning of vacation, ever since: Jake comes to us, Ethan gets to sleep in. Win!

So you see, it seems there's some magic to writing words like these in my blog: "I have found that change does happen eventually, if glacially. Though much fortitude and patience is required."

Because then? It comes suddenly and immediately.

And the reason I believe it's more than just a fluke? This isn't the first time that this has happened.

Two summers ago, I wrote a post, Cruel to be Kind, about trying to teach Jake to successfully buckle himself into the car during summer vacation. I thought vacation time, with no pressing schedule, was the perfect time for a full court press.

In that post I said this: "And even though he doesn't get it today, still looks at me like a scolded puppy when I make him bumble through, I hope in the future he will look back on these times and know that it was as painful for me as for him."

And then, the next day? I got to write THIS post, No Sweat, about how he did it perfectly, all by himself, without prompting, the very next day!

See, Blogging magic! Write about how a process he's in the middle of learning is going to take forever? And Jake successfully masters the thing we've been working on for months or years... overnight.

It doesn't seem to work with Ethan, though. Because I have written that he will eat vegetables "someday, in the distant future" many a time. And he still treats all things green as if they were poison.

Damn!



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Just a Friday Scatterfield

Well, it's not Sunday, but I'm feeling all stream-of-consciousness-y anyway; it's not Monday, but I am happily, simply being me; it's not Tuesday, but I want to just. write.

So I'm going to go for it. You'll bear with me, right? OK, then, spinning the brain cells and seeing where they land...

What a week it has been. Not the week I planned to have, for sure.

Nobody plans on getting a letter sent home in their kid's school backpack telling them that a teacher's aide in the school has been arrested for abusing a child there last week. (No, NOT my son, thank goodness.)

Nobody plans on being sick as dog and dizzy as a dervish for three straight days running.

Nobody plans on spending most of their one non-ill day at a Social Security office, trying to straighten out their elderly mother's paperwork, only to find out that everything the people on the phone had told them they needed was wrong, and they have to go home and get a whole OTHER set of documents and come back to try again next week.  

But, as we used to tell the kids, sometimes, you just get what you get, so why get upset?

And hanging out in the Social Security office wasn't a total loss. We got to be entertained by a very cheesy video about filing for retirement, starring Patty Duke and George Takei. Don't believe me? Here's a bit of print support material:

Boldly going out to pasture, and looking just so damn happy about it.

And you know? Right now at this very moment (wait, hold your breath, it may not last long) I miraculously feel happier than I have felt in a long time. And for absolutely no justifiable reason.

Maybe it's the lift that comes from finally feeling physically a bit better, near human-like, even, after days of dregs-living, ass-dragging, simian-reductive misery. One of those viruses that get into your middle ear and knock your gyroscope all wobbly, so any motion sets off the dizzies and horizontal is the only way to go.

Maybe it was the lasting glow from attending Ethan's "Colonial Stories" class publishing party this morning. Ethan's essay on colonial entertainments was fun and lovely, and I learned what the Scrabble word "Quoits" means, again. The way too delicious homemade pumpkin bread may have helped, too.

Maybe it was the wind scouring the sky clear of clouds so the golden light of day's end washed over the city, turning cold stone buildings into fiery fairy castles.

They say a strong wind will blow the aura right off your body, so maybe I was scrubbed clean too, maybe it blew the negativity clear off me along with the shredded plastic bags that danced before us as Jake and I walked along Riverside Drive, holding onto our hats.

"The wind! The wind, Mommy!" he exclaimed, still, in his glorious innocence, excited and surprised by nature.

Me? I'm excited and surprised by this serendipitous happiness; hoping to waft on these upward breezes, as long as they blow.

Long may they blow.

I'm linking up to Maxabella's I'm grateful for... because, well, I am feeling grateful.

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SOC Sunday: January Blues

Sunday. Yawn. Sunday. Thank goodness for SOC Sunday because coherence and my brain are not converging tonight. And this? Gives my incoherent rambling legitimacy. Yay, me!

 

@@@@@@@

 

January... 2012... so far? Not off to a brilliant start. Feeling, truthfully, like crap most days. Last week I said we were finally all feeling better. And yet it's not quite true. 

 

I am no longer officially ill, but have been left exhausted. Feeling bone tired. I feel so weary, like my mitochondria have just said "Eh? I don't feel like pumping any energy into cells today." and gone off to do something else. Fishing?

I literally cannot keep my eyes open, cannot drag my ass off the sofa to do much. I rally for an hour here, an hour there. The kids are fed and shuttled about. But the weekends are killing me because there is no school to keep them occupied so it's all on me & we are not going out to do anything more than the minimum and I hate being THAT mom, the lazy-ass mom. Which i have been nearly all month.

And there is SO much to do this month. LTYM-NYC is heating up. Summer needs to be planned - camps & the like. I have my first sponsored post & giveaway (almost like a "real" mommy-blogger!) going up tomorrow or the next day. And to do that one? I am composting, folks. Yes, right here in New York City. And no my kitchen doesn't smell like rotting produce, thank goodness.

And amidst all the angst and feeling so low - How much is physical, how much is emotional/depression?  DAMNED if i know! - I have to keep reminding myself to count my blessings. And there are some.

Jake is really growing and changing again this month. It was a rough start. The first 2 weeks of the new year held nearly nightly crying jag / meltdowns. But he is talking and interacting more than ever.  He practices conversation with me, the cat and his stuffed bear. Hopefully soon there will be real friends.

 

Tonight when I sat with him in the bathroom while he took his bath, he wanted to talk and talk and talk. His usual topics: what did my ear look like, what are the shapes of my eyes and eyebrows and head. How he was once a baby and will grow to be a man, how his hair is yellow-blond but mine is red-brown.  But still, there was more expansive language. The eye contact was full on and awesome.

The light in his eyes was fully on, his delight in talking with me, in the back and forth of our conversation was clearly evident, infectious. 

 

It is so easy to despair, to see how far he has to go. The progress is so glacial, so frustratingly  incremental that i have to make myself stop and look at where he has come from... So far! I need to close my eyes and remember back to when I questioned if he would ever be able to carry on a conversation of any sort, when he seemed so lost in his own world.

And so when I am getting all judgey with myself, when i feel like I have just lost all my mojo, that I am merely getting through the days, I need to hold on to this: My kids are thriving. And maybe it's in spite of me right now, but still, I'll take what I can get.

Reasonably happy kids = not sucktastic at all. And hopefully I can join them there soon.

@@@@@@@

Sorry I'm still in the cave here, folks. Hopefully the grateful cancels out the whining.
 
New to SOCS?  It’s five minutes of your time and a brain dump.  Want to try it?  Here are the rules…

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

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

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The Squashed Best of 2011

It's the end of the year, and, as I said in last year's "Squashed Best" post "a traditional time to both reflect back and look forward." I stand by that.

Although I will say that looking backward is so much easier than looking forward. Especially when you're old, like me. (Now is when you're supposed to protest that I'm not that old, or at least that I don't LOOK it.)

As I'm now approaching my 2nd blogaversary, it is fun to be revisiting things I've done from last year, creating bloggy "traditions," as it were. So obviously I had to do this, the SECOND annual Year in Blog wrap-up for The Squashed Bologna, 2011 edition.

This year there seem to be a gazillion people doing wrap-up linkys on their blogs, and I'm probably going to link this up with about half of them. So if you've come over from one and you're new here: Hello, nice to meet you! Pull up a chair and stay a while, have a nice meander through my blog. I'd love to offer you a cup of tea, but that would fry your motherboard.

And if you're an old blog-friend (I mean long-time, I'm not calling you old, really) maybe you missed one of these. If not, go visit an old favorite, or just say "Hi and Happy New Year." Whatever!

So, without further ado, some posts I'm fond of from 2011:

January: O is for Oxygen {All about my sons' early language development, or lack thereof.}

February: In my Grandmother's House  {My first memoir post - and it's a doozy - about some strange goings-on at Grandma Dunia's.}

March: The Last Room {Standing in the room my father spent the very end of his life in, remembering.}

April: B is for Best Friend {About Jacob's lack of, and desire for a real friend, and one day in the playground when a kind boy played with him.}

May:  Thoughts on my son's getting older and getting stranger  {What it is: Jacob is still autistic.}

June: H is for Holding Hands {A small, quiet, tender moment with my elderly, widowed mother.}

July: Breakers {At the beach with my sons, remembering summers past, reveling in the ocean.}

August: Missing my Father {His absence as a presence in my life that comes and goes, sometimes more acutely than others.}

September: Choosing kindness {Choosing kindness when it would be so easy to be harsh; both with my children and with myself.}

October: Blink {Watching a baby while sitting with my sons, remembering, and observing how quickly the time goes, trying to be mindful and appreciative.}

November: What remains possible {Another dispatch from the trenches of a hard day of special needs parenting.}

December: Skipping Maybe not my objective "best" but a fun and funny little post, because I am getting tired of the heavy, and I reveal my sci-fi geek self therein. Enjoy!}

and on to 2012 we go....

So, as to the "looking forward" part? I really have no idea what 2012 will bring. More challenges, for sure. But also, hopefully, opportunities. Growth and bounding forward for my sons. Maybe even a bit of maturity (for me, I mean; my sons will certainly be doing some maturing).

I know one thing I am certain of in 2012 is that it will bring new connections and strengthen old. What I never imagined when I began this little blog nearly two years ago was how it would expand my life. I never foresaw the amazing community of (mostly women, mostly mom) bloggers that I would become a part of, and who would become such a vital part of my life in such a short expanse of time.

If 2011 has taught me anything it's how vital community is, both local IRL, and virtual on the interwebs. And I am grateful, grateful, grateful for the overflowing support and friendship therein.

And so I wish you all the happiest of New Years, and a 2012 that is wonderful and bountiful, exceeding your wildest dreams.

Linking this post up at:

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Leaps and Bounds

Wide-eyed Jake at our building's Holiday party, 2011

I am happy to report some good news, for a change: Jake's original language has been making some marvelous jumps lately. The things he says out of the blue being startlingly observant and detailed, or his conversation loops are going deeper and deeper, continuing to make sense in wonderful and wondrous ways.

Jake to our neighbor sitting in the lobby with her leashed dog the other day as I brought him inside from his school bus:

Jake: You have a dog!

Neighbor: Yes I do!

Jake: Hi, doggie! What's your name?... (then, looking up at neighbor) What's his name?

Neighbor: His name is Jack.

Jake: Hi, Jack, I'm Jake!

Neighbor: He really likes kids.

Jake: (waving) Nice to meet you Jack! (then, to me, done here) Mommy can we go in and pet Cocoa?

A very nice, little social exchange!

Also, yesterday morning, my husband stumbled into the kitchen bleary-eyed as Jake was getting ready for school.

Jake: Daddy what's wrong with your eyes?

Dan: Nothing Jake, I just woke up, I'm still sleepy.

Jake: Dad, open up your sleepy eyes! Bigger, like this! (gives demo of his ridiculously wide-eyed stare)

And? Driving home from the big family Hanukkah party this past Sunday, we took a different route than usual into the city, as we were going to the East Side first, to drop off my mother.

As we pulled off the FDR into the city streets, Jake looked around and asked: "Are we home?"

I explained we WERE in the city but a different neighborhood, on the Upper East Side dropping off Grandma and would then be driving crosstown to the Upper West Side (where we live) through Central Park.

We were moments out of the park when Jake spotted a familiar building, and complained "That's not home, that's (name of our synagogue)!"

Boy does this all make me happy! Combined with his insights the other day (born, unfortunately, out of pain), combined with his amazing artistic spirit erupting, my son is really blossoming forth.

So as we head into this longest night tonight, having passed through the shortest day of the year today, I tell myself:

Have patience, have faith, it will be getting brighter; brighter and brighter, soon. Know it will happen, incrementally, day by day.

Believe; feel the coming sunshine, even whilst standing in the dark.

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Because

Because he would rather skip than walk down the street... and he's so fast that I have to run to catch up...

Because he gives the best hugs, pulls my cheek down to his lips telling me "Big kiss, big kiss for Mommy" and then plants one on me with a loud smacking sound...

Because every day when I meet his bus, he turns around once we're on the sidewalk to wave and yell "Goodbye, Deba, see you tomorrow!" and his stone-faced bus driver flashes him the brightest smile you've ever seen...

Because he draws people with "all the parts" and his drawings breathe with life:

It took Jake 3 minutes to do this sketch of "Mommy" as he was in a hurry to play

Yes, that's Timmy & his fairies from TV's "Fairly Odd Parents"

This IS our cat's expression when Jake's around: anxious

Jake didn't get to finish the body, but I love Bruce Wayne's face here

I tell you: "If you've seen one kid with autism... you've seen ONE kid with autism."

Look at my Jacob with fresh eyes, anew every day, and every day he will astound you.

As he does me,

as

he

does

me.

I'm linking up to Shell's Pour Your Heart Out & Maxabella's I'm grateful for... because I am so grateful for my wonderful autistic son Jacob.

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Autism's Little Gifts at Hopeful Parents

Yep, it's the 10th of the month again, so I'm over at:

where I'm being positive, not negative, and talking about the little gifts my son's autism brings along with it.

So come read me over at Hopeful Parents today as I contemplate Autism's Little Gifts.

Because I just can't do another cranky rant, even though I have plenty of material for that, believe me.

And now? Time to ice my elbow again (don't ask).

(But if you want details, read my Hopeful Parents post.)

Slogging Towards Grateful

If asked what words come first to mind about my state these days?

Grateful would not be at the top of the list. Probably not even on the first page.

I'm feeling mostly cranky and overwhelmed again; stress-eating everything in sight and barely sleeping. In a word: swamped. In the muck, stuck.

But also, the tedium of hashing and rehashing that all out again here, serving up a steaming plate of my refried misery for you? Done. Overdone.

I want to be moving on.

Aren't I always yammering on to Ethan about how happiness hangs upon the scales of gratitude not possession?

Time to practice what I preach.

So I will count my blessings instead of listing off my grievances today. (Even though they are many -- chief among them the story of how the hospital tried hard to kill off my mother, the full tale of which will be told when I can do so without being overcome by blind rage.)

Things I am Grateful for:

This week a number of my sons' friends have had step throat -- I am so glad we don't have that here (yet).

@@@

Last week a dear friend's father died quite suddenly, out of the clear blue, while she was traveling with him in India. He was young, vibrant, vital still - 70 - and it was quite a shock to her.

I am so glad that I got to say goodbye to my father, that I got to see him live out the full spate of his years. Even though those last months were so dreadful, we had completed our leave-taking with each other. We had no unfinished business. I am deeply grateful for this.

@@@

For the past two and a half weeks my mother has been in hospital and rehab unit beds, not her own. Unmoored and unhappy, isolated, alone and often confused when I could not be there (and I could not be there every minute, my children needed me, too.)

I am overwhelmingly grateful that she is finally back home, reconnecting with her life.

The whole staff of her assisted living community sought me out to tell me how glad they were to have her back, how much they had missed her. Her friends have brought her flowers, come to visit. 

The three musketeers will ride again!

I am so grateful that her home is a HOME - full of love and comfort.

@@@

I spent most of the day at my mother's trying to sort out the support services for her continued recovery and reintegration and the tangle of medications added & adjusted during her hospital stay.

But tonight? Thanks to a friend for lending a babysitter, my husband and I got to go out on a much needed date, the first in a long time (family and work events don't count).

I am grateful for the simple joys of sharing a movie and some sushi with the man I love.

@@@

Finally: in the past two years Ethan has chosen to be an obscure Pokemon for Halloween. This required MAJOR costume creation efforts from me with MUCH sewing involved. We're talking ears and tails here, people.

This year's costume, while equally elaborate has mostly involved acquisition and ASSEMBLY and not much in the way of sewing.

So I am very, very grateful for the lack of a TAIL in this year's Halloween costume. (And that elf ears can be BOUGHT ready-made on the internet.)

2009 - Lucario - TAIL

2010 - Electabuzz - TAIL

2011 - Link - NO TAIL!

Feeling righteously full of my Grateful now, it's off to bed... busy weekend coming up, so g'night all! (I still have a shield to paint before Monday.)

I'm linking this post up to Maxabella's I'm grateful for... FINALLY.


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...and that's why I'm a Twit

(as in some fool who likes to tweet on Twitter, not an upper-crust British nitwit a la Monty Python.)

Hello, my name is Varda and I am a Twitter addict.

OK, I've been cutting down some lately, as I have recognized that it can get in the way of, well, that (highly over-rated) "real life" stuff. When your son complains that you "Love your computer more than you love us!" you know it's time to scale back a wee bit.

A year and a half ago I didn't know even know what Twitter was. Well, I mean I'd heard of it, but hadn't given it much thought other than as that "wacky thing" some folks do.

Now I can't imagine how I wasted my time before Twitter. It's so efficient, so effective at sucking all the "spare time" out of my day.

But also, truth to tell, useful.

Sometimes I just want to shout into the cave and hear a voice back that is other than my own, echoing. Sometimes I have important things to say to the universe (well, to the approximately 1800 souls in it who follow me, that is), while other times I just want to share my momentary thoughts with at least the illusion that someone is listening.

Like today.

I was sitting in the car waiting for the clock to strike 11 so I could leave (following the arcane rules of the NYC Alternate Side Shuffle... if you live here -- and especially if you own and street-park a car - you understand; and if you don't, be glad you don't have to) my brain just bouncing around in the void.

So I sent out this tweet:

And got this back:

And that's it. Just what I needed. To know I'm not alone.

And then when I got home (car legal, good 'til Monday at 9:30), just checking in, I read this:

and decided to click on over to read her post. It was about aggravation vs. thankfulness and contained this poster:

A timely reminder if ever there was one, as I have been uber-cranky lately. Forgetting to feel grateful. Forgetting all that I am always hammering home to Ethan the complainer, reminding him how lucky he is.

I can hear my own voice yakking away at him, telling him: "The key to happiness is not how MUCH you have but how GRATEFUL you are for whatever you do have" in response to his whining for this or that toy he has seen advertised on TV and MUST HAVE or he will be miserable forever.

I remember when he was little, maybe four, and was being all fussy about his clothes, wanting to wear a very specific something that was dirty in the hamper, declaring every other possible item terrible, I just lost it with him. I was yelling about how spoiled he is, about how in so much of the world kids have only one or two sets of clothing that they own and THAT IS IT. And if they want them clean they have to wash them by hand, every day, maybe even in a river miles from home.

And he got a quivering lip and I thought "OK, maybe I'm laying it on a little thick" but he then said to me with so much compassion: "Oh, Mommy, that is just SO sad. Can I send them some of my clothes?"

And we hugged for a bit, and talked about what we could do to help those less fortunate than ourselves.

And that sweet memory of my son, and remembering to be grateful for all that I have in my life? Thanks to Twitter and the random moment I popped on to read.

That's one of the things I love about it, how it increases the serendipity quotient in my life.

Other things I love: That it is teaching me brevity, how to be more concise, I, who am so in love with words, who easily earns my reputation as "Queen of the run on sentence (with parenthetic clauses)". But Twitter? 140 characters, baby, or you're toast.

Also, I am by nature an eavesdropper, and Twitter was MADE for that, I can listen in on other people's conversations all day to my heart's content, no one the wiser.

I would like to call myself the Queen of Twitter, but really I'm not. I go through phases, I'm in and out. Sometimes I just read and lurk a lot. Mostly that's fun (see above paragraph) but other days I'm feeling down, vulnerable. And then I feel all left out, wonder why no one is @ing me. (Duh, dorkus, you have to jump into the conversation and @ others to be included, REMEMBER?)

The real Queen of Twitter right now (in my humble opinion) is, quite fittingly, my friend Alexandra aka The Empress who tweets as @GDRPempress and writes the blog Good Day, Regular People. She was on of my two wonderful BlogHer11 roommates, and it would be hard to find a lovelier, more gracious woman on all the planet, let alone the interwebs.

Any delightful or vital conversation going on - there she is! She re-tweets like crazy, offers tweets of support and encouragement constantly. Her stream looks like this, all day long: 

Also Alexandra is first on the spot with important messages and alerts. (And yes, it was she who clued me in to Anna See's tragic loss of her son last week.)

So if you're looking to pick up ONE new follow on Twitter - make it Alexandra. (After ME, of course. Do follow me, please! @Squashedmom, of course.)

So yes, when it's not leading me to fritter away my time, I can truly say that Twitter has embiggened my life (is TOO a word, coined on the Simpsons).

So that, ladies and gentlemen, is why I'm (proud to be) a Twit.

(And you can Tweet me, and we can talk all about it, or anything else you want to, in 140 character bursts.)


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Goodnight Irene

Photo source: NASA Goddard Photo

I figure having shared my neurotic fixation on the coming hurricane with you (you’re welcome) I have to write about the actual event, right?

Well, here in my neighborhood, New York City's Upper West Side (UWS)? A nearly non-event.

We live on high ground with solid bedrock underneath, in a brick apartment building built nearly 100 years ago when things were made to last, well, centuries. We’re on a single digit floor, high enough to look at thrashing tree tops, but well below the strong shearing winds. Safe.

The drive to pick up Jake from camp and bring him back to NYC was a bit hairy, with bands of drenching rain coming out of nowhere and then disappearing completely. But it was mostly the tension of having to make it back before the bridges and tunnels closed (most never did) combined with everyone's anxiety, as well as my own, that made it intense.

Really, I've driven through worse thunderstorms. Two so far this summer, in fact.

And while I had called and e-mailed like the crazy woman I was on Thursday campaigning to get Jake's camp to close a day early (it did), I was sad to have to miss the closing ceremony planned for Sunday, which was to have been a lovely family event.

I had been hoping to connect with other local autism families and possibly even make connections with the parents of kids Jake had been particularly drawn to during his week, ever seeking to help him have a true friendship spark.

Also? I love any chance to hang out with special needs / autism parents. We're a big-hearted, tempered-tough breed, usually with a good sense of gallows humor (at least the folks I like to hang with have one).

And I missed that. It was more of a "grab your kid and run before the storm" situation. Packing had clearly been done in a hurry. And since 3 of the 12 kids at camp were named Jacob? Yeah, we have some other kids' T-shirts and I'm sure they've got some of my guy's stuff.

I still haven't completely inventoried what has gone missing yet. But the most important thing - the irreplaceable blue bear? Safe and sound with us.

Others have not been so lucky. My heart goes out to them

I have spoken with friends in the suburbs and the country without power, those whose children were deeply frightened by crashing trees and rising waters.

A blogger you may know - Kelcey of the Mama Bird Diaries - has been flooded out of her home, and for God knows how long. She has young children, it's going to be rough, so go show her some support, here. (And, amazingly, she's kept her sense of humor intact.)

Vermont is in bad shape, having never dreamed, landlocked and deeply northern, that a tropical storm could impact, devastate them so.

Here there are a few trees down, but the sun was shining today and all the world seemed back to business as usual. We were out and about, too. The boys and I treated ourselves to Shake Shack for dinner tonight, and the joint was hopping.

I was pissy about folks complaining, whining about the "big deal about nothing" and feeling that the city shouldn't have shut down.

"I'd rather be over-prepared than under-prepared, wouldn't you?" I asked them, reminding them that there were people who lost lives, places where it wasn't "nothing" at all. (Yeah, I was a bit of a bitch today.)

And now we're back to trying to find ways to fill these last days of summer before back-to-school-ness takes over our lives. We will be getting busy, soon.

There are still mountains of musty smelling camp laundry to be done, bags to be unpacked from all our journeys (including my BlogHer swag bag - what the hell is IN there, anyway?) And summer's curls to be shorn, and school supplies to be hunted and gathered.

We are moving on.

Goodnight, Irene, now fizzling out over the deep blue Northern sea.

Your winds whipped down our street, you rains lashed our windows; and soon you will be a story we tell... where and how we danced with Irene.


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Nine Years and Counting

Nine years ago today my life changed...

Undeniably...

Irrevocably...

Completely...

(At exactly 10:12 - and then again at 10:13 - AM)

In ways I could not possibly presage, did not thoroughly fathom until, suddenly, there were two hearts, beating furiously in the world, that had moments ago echoed solely, safely, inside the cavern of my body.

Their cries piercing the hushed hum of the operating theater, the chill but joyous room where I first met my sons, and then cried out, myself, as they whisked them away, too soon. Too soon!

I squawked, demanded. (As much as a half-bodied woman, pinned to a table, being re-viscerated can be said to demand.) My obstetrician, a mother herself was supportive. I really loved her.

She was whip smart and had a wicked, dry sense of humor. She actually came in on her day off (also, coincidentally her own mother’s birthday) to deliver my boys, as at 39 weeks it was time for them to come OUT.

Hospitals are full of rules, and C-sections are very medical ways to birth babies. It’s really, truly surgery. They take a baby out, hold it up in the air in front of you for the briefest of moments, say “See, here’s your baby?” and then they whisk him away to do hospitally things to him.

As I was making noises about wanting to actually HOLD my babies, there was resistance from the nurses, they had their jobs to do. But my wonderful OB had my back. “You’ve got two, hand one over to her!” she commanded, and thus I found my son Jacob thrust into my arms, wrapped up like a little burrito in one of those ubiquitous striped hospital blankets.

I held him close to my face, peered into his.

The moment my son and I locked eyes has forever been seared into my brain. I had never experienced love at first sight before, never known that singular moment when everything turns betwixt one breath and the next; a shift of axis wobbling proportion.

And here, now, was that for me. Because here was the face of my son, unknown until the moment before, and now emblazoned on my very soul; and I knew with unwavering certainty that it was the beginning of our story, a lifetime of love.

And I knew that here was someone, one of two someones, whom I would die for. Someone for whom pacifist me would fight, tooth and claw, for; whom I would throw myself in front of a bus for.

And then, when they took Jacob from me and handed me Ethan, my heart doubled up, while remaining the same. An unexplained phenomena that just is: how a heart can be full to the brim and then fill again without ever emptying, expanding infinitely but remaining intact. 

My heart was still firmly encased in the cage of my body, and yet now also walking around the world beating away inside these two tiny beings at the same time. How can that be? Shhh, that’s one of the secrets of motherhood.

Finally they were done putting me back together and I was sent to the recovery room next door, my boys to the maternity ward upstairs.

I sent my husband with the babies, to join the grandparents, aunts, uncles and cousins who were gathering to meet the newest family members. I went to recovery alone. And thus began the longest two hours of my life.

@@@@@@@

This is another piece of the long story of my boys' beginnings.

Earlier this summer, I showed the world how I "rocked my bump" in a post I wrote to link up over at Shell's place.

Last year, I wrote a letter to my sons on their eighth birthday, recounting my joy at their coming into the world.

I thought I would have told my whole conception, pregnancy and birth story by now. I thought I would have had the time, that my life might be less of a whirlwind this year (foolish me). And yet it seems to spin, if possible, even faster still.

But no matter how quick the dance, I must pause each July 29th to give thanks, to marvel again at the miracle (modern, medical) that is the existence of my two beautiful boys.

Hello, my loved ones.

Happy Birthday, Ethan and Jacob.

Jacob and Ethan.

Today, nine years ago you graced the world with your presence.

Today, nine years ago you made me a mom.

My world has never been the same.

Thank you, from the top to the bottom of my heart.

I'm linking this post up to Maxabella's I'm grateful for... and this week I don't have to tell you why.


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Coming Along

Jacob’s speech is shifting again, he’s moving ahead, coming along… swimmingly.  The pace is fairly glacial, and so like the encroaching ice it moves so slowly you don’t notice it has crossed the line, carried on to elsewhere until, suddenly seeming, it is there!

Jake used to ask everyone questions that he already knew the answers to: "Is that a baby?" while staring at a baby. Contrary to the standard “book” on autistic people, Jake actually found it easier to ask a (straightforward, factual) question than to make a declarative statement.

Well, that seems to be shifting now, and Jake is just declaring away to any and all around him. Thankfully most of the people he talks to are willing to play along, not delve too deep into why a big kid is sounding so much like a little kid.

There is no meanness. Yet. But, then again, he hasn't tried talking to too many teenagers. Yet.

Jake to a man walking a dog the other day on the street: “Excuse me, Man? You’re walking your dog!” Luckily the man smiled quizzically then kindly, and agreed that yes indeed, he WAS walking his dog.

When we took a train ride recently, on the return trip home the train was very crowded and it took a long time for the conductor to make her way through the car. Jake was leaning out into the aisle watching her, clearly impatient to talk to her.

He started to shout out to her, but I made him wait until she was close. When she was two rows away from us, he just couldn't contain himself any longer...

Jacob: "Mrs. Conductor!"

Conductor: "Yes?"

(I couldn't wait to hear what in the world he was dying to say to her; really had no clue.)

Jacob: "I have a ticket!"

Conductor: "And I'm going to come punch the heck out of your ticket in just one moment. Wait and I'll be right there."

When she comes to take his ticket, Jake is beaming, then makes a request: "Make a happy face, please." (The conductor on the outgoing train had done that, pleasing Jake no end.)

Conductor: "Okay..."

And then? Jake kicks it up a notch: "With teeth, a happy face with pointy teeth!" (I'm thinking: no more vampire movies for you, my son.)

The conductor, bless her soul, is game: "Well, I'll try..."

And she did. And Jake was pleased. It doesn't look much like a vampire happy face, but she get's an A for effort and kindness, for sure.

The other day I was listening to Jacob tell me something when it hit me like a ton of bricks: He was using complete sentences without prompting.

A year ago, while he was certainly capable of using complete sentences, we mostly got single words and short phrases (if it wasn't a completely scripted phrase) unless we pushed for more. And so we had to push, push, push him. And deny him, pretend to not understand. If he could get what he wanted with two or three words, that's all we'd get.

Instead of "I want to want to wear the red shirt today, Mom, can I have it please?" (now) he would say "Red one." We had to pull expansiveness out of him, and it was exhausting.

So when did that change? I couldn't tell you. When did this full-sentence-talking-boy emerge? Dunno.

That night I asked my husband: "Have you noticed Jake almost always talks in full sentences these days?" And he had to stop and think about it, and then agreed with me that yes, he does, and no, he too has no idea exactly when that shifted.

And that's the maddening thing. There is no exactly. It's minutely incremental, like how sand dunes "walk" across a desert, a few inches a day. And you never notice the day-to-day movement until suddenly it's clear the landscape has altered irrevocably.

That's Jake.

He is also asserting himself in new and interesting ways...

When Ethan grabs the TV clicker as he sits down in the living room where Jake is in the middle of watching a show, Jake will now pipe up with: "Ethan, don't change the channel... I'm watching something!" 

When I spoke to him the other day and addressed him, as I often do, as "sweetheart" I got this response:  “Don’t call me sweetheart. My name is Jacob.” (This is probably an adaptation of a script from a TV show, book or movie that I just don't recognize, but it's so damn appropriate that I'm going to count it as amazing anyway.)

I don't know where all this is going, but I know it's a long way from where we've been. And for this next year,  I'm vowing to pay more attention on the way,

But I'll probably still be taken by surprise by Jake's changes. He's a sneaky one, that boy, growing and growing up, changing and evolving while I'm distracted and focused elsewhere for a moment.

I look at him and he's standing in place, admiring the flowers. I turn around and there he is, a whole square further down the path, smiling and waving.

And as long as he's forging ahead, I wouldn't have it any other way. Keep going Jake, keep going... leave me in the dust, please.

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



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