Wednesday, October 31, 2012

October Round-Up: What I Loved on OTHER People's Blogs

Bench, Georgia Photo Walk by Neil Kramer

Welcome to the October edition of my monthly "What I Loved on OTHER People's  Blogs" feature. The place where I share what has caught my eye (and brain, and heart) on the internet over the past month.

As usual, I hope you will find old friends here as well as wonderful new reads.  

Also, as usual, I am featuring many photos from my friend and amazing intstagram photographer  Neil Kramer - of the blog  Citizen of the Month. October was a traveling month for Neil, so besides NYC we get his wonderful and unique view of Georgia as well as LA, his other home.


Watching the World, LA by Neil Kramer

Bits and pieces by Veronica (V-Grrrl) of Compost Studios

Freedom of Speech by Spectrummy Mummy of Spectrummy Mummy

I talked to a bunch of third graders... and I liked it. by Lizbeth of Four Sea Stars

Out of Business - Queens, NYC by Neil Kramer

Are We Allowed To Talk About The Rampant Objectification And Sexualised Violence Towards Women? by Eden of Edenland

Dear Rep. Joe Walsh: I DO EXIST by Cecily of Uppercase Woman at Babble Voices

Shadow by Neil Kramer

Because "love" should be a verb and "retard" should never be a noun. by Kimberly (Grady Doctor) of Reflections of a Grady Doctor

An Open Letter to Ann Coulter by guest John Franklin Stephens at The World of Special Olympics

Wall, LA by Neil Kramer

To Friends by Jennie of Anybody Want a Peanut?

The healing quality of the dance party. by Jo-Ann of Punky Mama

Bittersweet Amazingness. (The ghost of PPD) by Jenni of Mommy Nani Booboo

Sunset, LA by Neil Kramer

Married with Children… Special Children by Jim of Just a Lil' Blog at ChildsWork's ChildsPlay Blog

bob dylan’s brain by Meredith (camerashymomma) of the~spirit~of~the~river

Three Stories by Neil of Citizen of the Month

The Valley, LA by Neil Kramer

Hope you found something new and interesting to read. Or re-discovered an old "friend" of a blog that fell of your reading list.

And if you come across anything in the course of your reading that you think "This is a fantastic thing that is just up Varda's alley, she should read this and feature it in her monthly round-up post!"? Let me know about it via Twitter - @SquashedMom.

Rockefeller Center, NYC by Neil Kramer

(And finally three more wonderful Neil photos, just because...)

Photos by Neil Kramer

Tuesday, October 30, 2012

Running before the storm

Mom, Sunday
Sunday I was torn, yet again, between my mother and my children.

Any plans I'd had for the next few days were scotched by the coming of Sandy, a "Frankenstorm" of supposedly biblical proportion.

And this meant especially that I would not be spending Monday with my Mom at her Long Island nursing home, but instead in my home, holed up with the kids, as school was being cancelled. Furthermore, if the storm proceeded as forecast (and it did, as we all know, rather exceed expectations) it would be days and days before I could get out to see her again.

The choice was clear: Sunday or not until Friday at the soonest, if that.

My practical mind told me not to go. Driving was out of the question, as the mere possibility of car trouble, accidents, etc. stranding me out on Long Island for the week was giving me palpitations. But the subway and train option was not ideal either, as New York City's entire transit system was being shut down preemptively at 7pm that evening.

And yet... and yet... my heart told me to go.

And my gut.

Because as much as Mom does not consciously remember my visits, at some deep, other level, she knows. And it affects her in all ways, physical and mental.

Things happen. The initial fall. The middle of the night sink vs. face incident. The butter knife fiasco. These all occurred after a missed visit. They all happened on the rare occasion of there being more than a week's passing since I had last seen my mother. Or, more germanely, since she had last seen me.

So I feel that while she may not remember my time with her, something in her psyche does, and she unravels a bit, if that's missing.

Now this may be all malarkey. It might be coincidence. I may be borrowing guilt for no good reason. But what if I'm not wrong?

And then there's that other thing: what if I don't go and something happens during the storm?

So I fought with myself a bit; crowd-sourced my decision by posting my dilemma to FaceBook, but ended up, of course, taking only the advice that fit in with my gut feeling, unshakable, that this trip needed to be done.

And so it was.

I would have to time it very well. No chance to linger. I would have to catch my train home well before the last subway was leaving Penn Station.

(Such an odd concept to a native New Yorker: the "last subway" being normally non-existent in this, the city that never sleeps. I remember being shocked when I lived in Boston for a college summer to discover the T stopped at midnight, and equally appalled by Paris's dernier métro.)

Going out, I was lucky with the subway, a number two train pulling in moments after I'd arrived in the station, so I made my train with time for Starbucks (there just may be a god).

I arrived to find Mom playing bingo, a new-found pleasure she finds as embarrassing as it is enjoyable (she likes to win, my mother does).

And then, too, a brief visit from Uncle Walter - Mom's 85 year-old "baby brother" - who came bearing flowers, fruit and chocolates, as always.

Mom and Walter at the BINGO table

Owing her a manicure for many weeks running now, I managed to get Mom's nails done as she played, no mean feat.

"I love it when you do my nails" Mom always tells me. But getting her to remember they're wet and hold her hands still long enough for them to dry unmarred is quite another story. (I've figured out to do them one at a time. It takes twice as long, but is the only way it works without tears.)

Still, it's a tangible reminder that I've come, and this is a very good thing. "Your nails are lovely" everyone tells her, and she answers "My daughter did them!"

And then she remembers, she knows (at least for the next few minutes) that I was there.

Just Write

Sunday, October 28, 2012

There but for fortune

My Jake
"I love you, Mommy."

He says it quietly these days. Sometimes loudly. Spontaneously. At the dinner table last night, as I sat down. Often enough to almost take it for granted. Almost. But also never. Because my boy is autistic.

Because once I did not know if Jacob would ever say "Mommy" let alone "I love you."

Once I did not know if ever there would be conversation, a back and forth, a flow. And now, of course, I find myself begging for a break from Jake's constant need for engagement.

The conversations are odd, of course, bringing smiles or bewilderment to the faces of the folks waiting at the bus stop with us (for the dreadful will-it-ever-come M104) as we repeat topics over and over, revisiting them cyclically as the waiting goes on and on, and Jake walks in circles, tighter or wider, to relieve the anxiety of the when-will-the-bus-come unknown.

There had been good news from the ophthalmologist: Jake no longer needs glasses. Another thing we had thought might never come to pass. But of course my son being a creature of habit greets this news with none of the joy his twin brother Ethan had three years ago, upon the same pronouncement.

"I. Want. My. GLASSES!" he bellows as I explain patiently (for I knew this would involve much patience, greeted this "good" news with trepidation, fearing just such a reaction) that "the eye doctor says you don't need them any more, the glasses did their job, they're finished."

Jacob's school's half-day Friday had seemed the perfect opportunity for his annual eye exam. And it turned out fortuitous in so many other ways, as I had a real need of my son that day. A need to see him, to hold him tight.

My community was hit by tragedy Thursday: a family lost two children to unfathomable, senseless violence. And when I say my community, I mean more than just we live in the same neighborhood, I mean we have a connection to this family (although I do not know them personally). 

There was a bit of the same feeling around the Upper West Side right afterwards as there was on 9/11: a sense of shell shockedness, a sense of there-but-for-fortune-ness. Not as universal, more of an echo; but still, more than a bit spooky.

"Why? why? why?" drummed over and over in my head as I walked about the streets. Taking Ethan to school Friday, morning the parents were out in full force. Those of us who often send our kids in with "the neighbors" could not seem to do it, needing to kiss their heads personally at the last possible moment and watch their backs recede into red brick buildings.

So many of us appeared with eyes dark circled, earned from 3 am checks of our slumbering children. How long had it been since I had stood in a doorway, watched two small rib cages rise and fall in the near darkness?

My mind kept curling back, all day long, to the mother, the family. The mother (like so many of us) employing others to watch her children, in spite of being an at-home hands-on mom, because when you have more than one child, having help is... very helpful.

I return again and again to the screaming everyone says was bloodcurdling, primal, knowing that such sounds would be erupting from me were I ever to come upon my children, likewise undone.

I cancelled my Friday evening plans (an old friend's play). We sat together for a family dinner, dusting off the Shabbat candlesticks and lighting them, finding comfort in familiar, in ritual, in ancient things that continue.

Finding more than comfort in my son's words as I sat at the table; "I love you mommy" taken for granted never, appreciated now more than ever. And now I attempt to embrace sleep, to resist the siren call of watching my children slumber, reassuring myself of their continued existence on this planet.

If will alone could protect them, keep them safe all their lives, then all our children would live forever.

And so I hug my sons a little tighter now.

Please hug your children every day.

Finally, I can never say or think the words "there but for fortune" without hearing Phil Ochs sing them. So here he is, now doing just that:

Thursday, October 25, 2012

Mom. Today.

Another day, another drive, another visit with my mother.

I arrive with a paltry cache today: no cookies for the staff no cake for my mother, no new clothes, no taking her out to lunch, no manicure, no courtyard nap in the sun.

Just myself, briefly, too briefly, but all that is possible today, and a wide toothed shower comb (two for three dollars at K-mart, the one I had bought for myself, as mom's had been pinched by her klepto roommate).

As ever she is surprised and relieved to see me, no idea of how long it's been since my last visit. It could have been just an hour earlier this same morning but that would be too long ago for her to recall, making it too long, so lonely long since my last visit; to her.

The tears stream down her face when I arrive, and when I leave, as always.

She has no memory of this week's visits, of last week's visit when I took her out for a drive, and to lunch in town at a Japanese restaurant. 

I show her picture proof and she is astonished: "Is that me?' she asks, barely recognizing her own image, the thinner, paler, diminished ghost version of any self she knew.

We have taken over the north-west lounge, my mother removed from the wheelchair, relieved to be ensconced on a vaguely comfortable sofa.

She wants to see more pictures and I oblige, scrounging around the iPad's spotty collection of photos I'd uploaded intermixed with images from the videos Jake watches incessantly on the thing. A thousand educational apps and all he wants is YouTubed basketball games from the 1980s. Knicks and Celtics, preferably.

Its always risky showing Mom pictures of Dad, of the two of them, together, looking so happy, robust and young, even if they are only from three years ago. The change is startling, terrifying. and she gets so wistful, so sad: "He wasn't just my husband," she tells me, who knows this better than anyone else in the world would, for perhaps the hundredth time, "He was my best friend."

Me, Mom & Dad, September, 2009

"Oh, Varda, I miss him so much!" and the floodgates open again. (But how much worse would it be if she started to forget him?)

Lunch arrives and I am once again facing off against a recalcitrant toddler. "I'm just not hungry" says my former food-loving mother, as she pushes the broccoli florets around on the plate.

But the mere act of my sitting with her pushes her appetite forward, if just a little bit.  And I resort to blatant bribery and outright bullying. Just like with my kids. "Come on, Mom, one more bite of chicken and you can eat your (rapidly melting) ice cream."

After a quick stuffing I take my leave. There are children to be picked up and dropped off, ferried about, and homework supervised and checked.

I know I'll be back on Sunday and Monday, but to her, just like my boys the first time I left them in someone else's care, it's the end of the world, abandonment forever.

I hope on Sunday I'll have at least one boy in tow. I pray that the phone calls I get from the home continue to begin with "Your mother is fine, I just called to discuss..." and never get darker.

Pop music floods my brain as I drop into the driver's seat, pushing out my tears, my sorrow, making the drive home possible, as Shakira serenades me and my car, like an old horse, seems to know the way home.

Tuesday, October 23, 2012

Dear Ann Coulter: This is who you insult with your words

A friend has pointed out that during the Presidential debate last night, the conservative pundit Ann Coulter had tweeted this little gem of an insult to our President:

And she started a link-up on her blog, invited us, who have special needs children to tell her: "Dear @AnnCoulter: This is who you insult with your words" and share a picture of our child(ren) who may some day be (or already have been) called out with the term "retard."

Ann, here is my son Jacob, a beautiful 10 year-old boy with autism:

Spend five minutes with him and you'll know he is different. He is likely to ask you, over and over again, who Patrick Ewing is, or who the coach of the 1984 Celtics was. He is likely to get really excited and jump up and down and flap his hands as the feelings so move him. He is just as likely to carry on a conversation with your pet poodle as he is with you, should you be walking your dog down our street.

He would never call you or anyone else a "retard." He does not know what that word means, nor would he cruelly insult anyone on purpose. But you know better. And still, you do this.

I know you don't care. You have shown time and time again your willingness to use the meanest language you can just for the shock value, and because yours is the party of the top dogs, of the survival of the fittest, of only the wealthy 1 percent who counts and the rest of us can drop dead for all you really care.

You know that language matters, that language can hurt, diminish, dehumanize. It is not news when I tell you this. And I know, you still don't care. But still I must say it, must say that your use of the "R-word" as an insult is dead wrong and downright evil, and call on you to stop.

And, furthermore I must point out that it was completely inappropriate to so childishly name call a standing President of the United States. It has amazed me how many conservative Tea Party type Republicans, the kind who keep demonizing modern morality and call for a return to "old fashioned values" see nothing wrong with shredding the dignity of the Office of the President.

Even if they disrespect the man holding that office (and oh, they do) - he *IS* the elected leader of our nation, and thus even if they find fault with him, there should be a level of respect in the way he is discussed. They do not seem to care that they are reducing the status of the OFFICE of the President when they engage in their wholesale dismissal of the man. Getting in their licks seems more important than retaining the high regard of all the other nations on our planet.

And I cannot help but believe, deep into my bones, that this is racism, through and through. The dismissiveness with which he is spoken, the insulting, demeaning, diminishing and disrespectful language used toward President Obama, over and over, is the belittling kind of language used by people toward those they think of as "lesser" and the President's brown skin and African American heritage put him in that category in their minds, and thus free their vitriol to find a new low.

As nasty as the Right was toward Clinton, a different sort of language was used for their insults of him. Because he was white. No dancing around it. And I am sure if the President was a woman there would be an equal lack of respect in the tone used to cut her down to size.

I don't talk about politics much here in my blog, I am mostly a personal storyteller. But some things are too big and wrong to let stand, and thus I'm up on my soapbox today, concluding with this:

Ann Coulter, and the rest of you: stop being so racist in the way you speak of our President, and stop using language that hurts MY child, a boy with autism whose brain works differently than yours.

He is not a "retard," he is not less valuable than your neuro-typical kid.

And he is also something of great value that you are not: nonjudgmental. Kind.

Oh, and this is a blog-hop, so if you've written a post on this subject yourself, please add it on below!

Monday, October 22, 2012

Taking Mom for a Drive

Mom, in the car
On Thursday, when I drove out to see my mother, it was a beautiful day, I thought possibly one of the last unseasonably warm days of October. While the trees in the city are barely registering autumn's existence, I spotted some orange and gold amidst the greens as I wound my way through the island, and the idea dropped into my brain: why not take Mom out for a drive?

Since her fall in May, the only time she's been outside has been when she's being transferred between facilities or for brief wheels around the courtyards of the nursing home.

At first Mom was in too much pain to contemplate transferring her into the car, and then there was the next fall in August. But it's been a while since then, and I'd been mulling over what I could do to lift her spirits mightily and there was nothing I could think of that would do that better than a foray into the world.

Upon arrival at the home, I proposed it to the unit charge nurse and she saw nothing to stop us, so she dug out the paperwork and plans were set in motion. There were a few kinks to work out, so by the time we left it was approaching lunchtime.

Then I got really ambitious. While I'd initially been thinking: half hour drive and right back home, I decided to try taking her out to lunch as well.

Mom has been losing weight, her appetite diminished down to near nothing. Mostly it's depression, but some of it has to be the monotony of the food; hospital or nursing home it's all the same bland stuff.

So into the car Mom went. (The car that used to be hers.) A few minutes into the drive I realized two things: that her hearing aid battery was absolutely dead, and her morning Tylenol dose had worn off, so the bumps and bobbles of the road were causing her enough discomfort to be distracting.

A stop at the local Rite Aid remedied these issues and the drive continued. I also handed her a lovely mini blueberry scone (from Alice's Teacup) that I'd snagged at the PA meeting I had attended that morning before trekking out to the island.

We toured the roads of Port Washington and Sands Point. I drove her by the big fancy houses nested along the shore. We caught a few glimpses of beach and the Sound, where it opened up to the most expansive vista she's enjoyed in months.

Every turning tree, every still blossoming garden elicited her enthusiastic appreciation: "Oh, how beautiful." or "Just look at those leaves!"

After about a half hour I was getting hungry and so steered us into town. Port Washington is a really special place to me. Not the town I grew up in, but the town of my cousins. It's a place with a personality, a center; not a suburban-nowhere. And I've been spending time there for nearly half a century.

I knew we could get a good meal in the lovely little downtown and in a fit of inspiration I chose Japanese. My parents had loved Japanese food, especially my father who thought a good bowl of nabeyaki udon was something approaching perfection. Wherever they lived, they had a local Japanese restaurant they frequented on a weekly basis, befriended the owners, became "the regulars."

And now it had literally been years since Mom had eaten Japanese. I remedied that on Thursday.

The place was near empty, which worked for us. I ordered the salmon teriyaki lunch special for my mother. And she ate with gusto. She ate the Whole. Damn. Thing.

Mom, slurping up her miso soup

So much for the lack of appetite.

It was a lovely lunch. I had set Mom up with a view of the large tank of koi goldfish, living things always pleasing her so.

It was good for her to be out in the world, good for me to be with her, in the world.

There was a part of me, of course, that didn't want to turn into the home as we approached; that wanted to keep going, to drive and drive, kidnap mom, ride off into the sunset with her, feed her all kinds of interesting foods, show her as much of the world as we can see for as long as she can keep going, a Thelma and Louise style road trip (minus the violence and the cliff and all, though).

But of course I didn't. There were some little people who would be very hurt and disappointed if their mom didn't come home at the end of the day.

A breeze was picking up as I pulled into the circular drive, the leaves all waving goodbye as I wheeled Mom back inside. There was a bit more sparkle in her eye as I kissed her goodbye, squeezed her hand, promising, as always, to return within a few days.

What shall we eat next, when I do?

Indian or middle eastern?

(Let the adventure continue...)

Friday, October 19, 2012

Amy Grant talks (and sings) about Caring for Aging Parents on Katie Couric, and I was there...

What do Katie Couric, Amy Grant and I all have in common?

We have all gone through - and are still in the middle of - caring for aging parents through their physical and mental declines.

And how do I know this?

Katie and me
I was invited to the taping of Katie's show on Taking Care of Aging Parents, which airs today (at 3 pm here in NYC, check local listing for elsewhere), as a special audience blogger/tweeter. It's a lovely way Katie and her show are actively engaging bloggers and the social-media-connected generation.

I was also asked to contribute a post for the Katie show blog, and you can find it here: Caring For My Aging Parents

I highly recommend you watch this show if you have any interest in this topic, or even if you don't but you have still living parents or other older people in your life you may end up caring for some day. And even though it may SEEM years away still, you never know what fresh disaster is just around the corner (ever the eternal optimist, I know) to make that hazy "someday" instantly morph into today.

It is intense, exhausting, deeply rewarding, filled with love and sorrow, and something nobody thinks about - or wants to think about - until it is thrust upon them. It's better to be prepared. Don't turn away just because it's unpleasant to think about. Watch and start to plan now!

Also Amy Grant gifted us with a live performance - the world premiere of a new song that she wrote for her parents, her mother now passed on, her father deep in the throws of a grave dementia.

Amy Grant performing on Katie

Blogging the show was a great experience. I got to hang out in the green room beforehand, watch the show from the front row, and comment on it throughout via my twitter stream. Katie sat next to us bloggers during Amy's moving song.

Me at Katie

It was also fun to be back on a soundstage, reminding me of my former life in film & TV production. Sigh. And then it was back to "real life" (taking care of kids and mom).

Wednesday, October 17, 2012

Wordless Wednesday: NY Comic Con!

Jake and some Power Rangers at NY Comic Con

This past weekend was NY Comic Con, an annual event for our family, as Dan is "in the biz" and I've been bringing the boys for the last few years.

The boys love hanging out at their Dad's booth
Ethan as Link, at the Javitz entrance

Ethan went costumed as Link from The Legend of Zelda (video game) again, a bit disappointed that only a handful of people asked to take his picture, versus a multitude last year.

Jake, as always, was thrilled to see and "meet" his favorite characters, especially the Japanimation kind. Thank goodness he is more of a sensory-seeking than sensory-overload kind of autistic kid, or he would have been undone by the throngs and noise.

Jake saying hello to the Captain
Fascinated by a Dragonball Z tableau
Holy Lego Batman, Robin!
This year was more crowded than ever, but we still managed to have a lot of fun while eating only a minimum of overpriced chazerai.

(Yes I collapsed when we got home Sunday night.)

Saturday, October 13, 2012

This Week, Cliff Notes version

The perfect visual metaphor for my week, courtesy of NY Comic-Con
There is so much going on, and I truly have no time to post, no mojo for writing but I didn't want to leave you all hanging. Thus follows the briefest of updates: a skim of the surface, a telling detail here or there and then, I'm off...

First and MOST IMPORTANTLY: Mom is home!  They wisely figured out that keeping her in a depressing place was not going to help lift her mood, and so sent her back to her nursing home Friday around mid-day, and I was able to arrive near simultaneously to settle her back in.

Of course with her short-circuited short-term memory, this may not have been strictly necessary, as within fifteen minutes of her return she was replying to warm greetings of the "Good to see you're back!" variety with: "What? Back from where? Was I somewhere else?" Groundhog Day all over again, as ever.

But still, I know part of the constellation of keeping her from spiraling into the pits of depression is frequent visits from me (and other family and friends). She may not consciously remember my having been there, but some part of her psyche knows, and it lifts her.

Unfortunately, if was yet another gray, chill day, so I couldn't wheel her outside into the sunshine she so craves. So it goes.

Those two visits to the mental hospital, further out on the Island, took about a year off my life. I hope never to see the inside of a locked psych ward again. (And this was a rather "nice" place.)

Gray Day, from LIRR train window
New York Comic-Con has begun, and thus with a husband "in the biz" I am a single parent for four days, Thursday through Sunday.  These days I usually only show up on "Kids Day" Sunday with the boys in tow, but Dan needed me to escort some nonagenarian participants to his panel this Thursday.

So I got to have a little preview of the show and stopped by the Aliens video game booth to get my picture taken (see top of post).

What else happened this week? (all a blur)

Oh yeah, last Sunday, the day I got the call about my mother's butter knife incident, we went to... The Harlem Globetrotters Game!!!!!!! It was awesome and fun and also annoying as hell because the Barclays Center has just opened and really, really didn't have their shit together yet.

Also my husband is more of a baseball than basketball guy - he is really, really not a noise and crowds person and baseball stadiums are OUTDOORS so the noise dissipates verses indoor arenas that amplify.

Which translates into it's going to be just me and the boys going to the Globetrotters when they return in February. (I think the quote from him was "Once in a lifetime is enough.")

OK, that's all. Getting ready to brave Comic-Con tomorrow with the boys. I believe Ethan wants to be Link again. Wish us luck!

Thursday, October 11, 2012

Hopeful, Kindred Parents

Families with autism (and other "invisible" special needs) are all around us, everywhere, everyday. I never used to notice them, specifically, pointedly, until we became them. And now I can't not see, not try to connect whenever possible. 

When my kids were little still, my eyes would always be drawn to the boy apart, walking the perimeter of the playground, hand bumping along each link of the chain link fence, on his toes, eyes cast down; to the girl tearing her dress off, rolling in and eating sand, screeching one octave higher and louder than any other kid in the playground but seeming deaf to her mothers words.... (continued)

Well, YESTERDAY was the 10th of the month again (and considering how much is going down right now in our lives, it's surprising that I'm only a single day late) so click on over to Hopeful Parents to read the rest of my post:

Kindred Spirits


And come back here tomorrow for an update on my mother or some pictures of my cute kids or more talk about autism or... look a squirrel... oooh, something shiny... what was I saying? Oh, yea, maybe some chatter about my ADD... or whatever.

And thanks for all the support. It is heard, felt, and very, very much appreciated, even if I am not up to the task of replying personally to each and every comment.

Tuesday, October 9, 2012

Her way home

"I just want to go home!" she barks, frustrated, angry, bone weary tired. Then with a whimper and a catch of breaking tears: "Varda, why won't they take me home, now?"

Home. A shifting and shifted concept for my mother.

Home now is a nursing home; half a room; one dresser, one wardrobe, one nightstand and one small bookcase hold the sum of her worldly possessions, whittled down to a nubbin.

"I'm so sorry, Mom. You can't go home today, Mom." Holding her hand, leaning close, I try to break the news to her as gently as I can, for yet again the tenth time within the past three hours that we have been sitting in this, the intake office for the geriatric ward of a psych hospital.

"Why not?" she wails, distraught. "I just want to go home!"

"Mom, your home sent you here to get help; to make sure you're safe. Do you remember what you did?"

She stares at me blankly, searching her near non-existent short-term memory.

"You held a butter knife up to your throat at the lunch table and declared your willingness to end it all."

"Really?" She asks. "I don't remember doing that."

Of course not.

"Mom, you have to stop saying things like that. Then they'll send you home."

In spite of it all, as always, the sense of humor remains intact: on being told she had to stay at the psych hospital until she stops making suicide threats: "Motherfuckers, don't they know a butter knife won't kill you?"

(Yes, I'm a chip off the old block.)

Neither I nor the Psych ER team who evaluated her think she's actually a threat to herself or anyone else. But yes, she is deeply depressed (as her situation IS deeply depressing, with no end in sight) and she does need help to lift up out of it.

And so the nursing home, deeply concerned, has insisted that she ship out until she shapes up.

I understand it is their job to keep her safe. They felt they could not adequately do that, were afraid of the consequences of failure.  But still, I think there has to be a better way, one that will not disorient and frighten her so, on the path to saving her.

Hollow speculation, however, as this is our way now, her way.

No way around it.

Have to go through it.

Mom's going on a bear hunt.

To find her way home.

Just Write

Saturday, October 6, 2012

It's October 6th again, isn't it?

I was having another rollercoaster day yesterday. Actually they are all pretty much rollercoaster days, these days. Just the nature of the beast right now. But yesterday I was really feeling it.

It started a few minutes before six in the am, when Ethan padded in to tell me he had gotten up to pee and just couldn't get back to sleep. Nearly an hour and a half before he truly needed to awaken.

When I went in to their room to get Jake shortly thereafter, he woke up crying and yelling, exactly the same way he'd gone to sleep the night before.

Getting both kids out the door to school?  Took everything out of me, and it was only eight am.

The sky was crackling blue. It was a beautiful, seriously beautiful day.

But my heart just wasn't in it. I felt off. Going through the motions, but not fully inhabiting my body.

My ten-thousand item to-do list shortened only slightly, in spite of much doing all day long.

And Ethan was a cranky tired beast when I picked him up from his playdate, on our way to synagogue for our Hebrew School's annual Sukkot celebration.

In synagogue, however, there were moments of grace, of beauty. Standing one arm around each boy, my husband just to the other side of Ethan, swaying and singing ancient melodies my ancestors had chanted unto hundreds of generations back, I felt my heart opening, softening. I felt connected to something vastly larger than myself, a thing braided of community and spirit; a rooting that was much needed, deeply felt and vastly appreciated.

Jake looked over to me at one point and offered up a rare spontaneous "I love you Mommy." Ethan leaned against me and snuggled into my shoulder (he may have taken a little nap).

And then Ethan melted down over the lack of soda or pizza at the potluck supper. Declaring lasagna and other delicious food "disgusting." Sigh. He had Challah bread for dinner. And water. (But how come I'm the one who feels like a prisoner?)

And today? I was even offer (I know that's not an actual word - but do you really want to pick a fight with me today? No, didn't think so.)

And then I noticed the date.

It's October 6th.

A really crappy date for our family. (In spite of it being a dear friend of mine's birthday - Hello Elizabeth, this has nothing to do with you darling, YOUR October 6th is a lovely date.)

Two years ago today, we buried my 93 year-old mother-in-law who had passed on the 4th.

And eight years ago today?

Jake got his first autism diagnosis.

Some dates you just don't forget, even if on the surface you appear to. The sit subconsciously in the back of your skull coloring everything around them until the light bulb goes off and the connection is made.

Sad, bad, mad anniversaries.

I hate 'em.

Nothing to do but forge ahead, get through it.

And be glad that, to quote Scarlett and Jacob, "Tomorrow's another day."

Wednesday, October 3, 2012

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?"


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.


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?"

Monday, October 1, 2012

October Thoughts

Mom, on the last day of September
It's the first of October... and what will this new month bring? Certainly more visits to my mother, twice or thrice weekly, sometimes with a boy or two in tow, sometimes not. (This past Sunday, with.)

Mom & Jake on Sunday
The air took a turn for the crisp today, and I was so ready for that, as my thoughts are gliding towards the autumnal too: a little sad, the bitter mixed in with the sweet. These are the days of waning and I feel that in nearly all things right now.

None more so than when visiting Mom.

She is so diminished, I don't even know what to do with my feelings when I see her. I just try to care for her as best I can. I hold her hand and look into her eyes. We talk a little but not so much, the deafness being a barrier as well as the cognitive dimming.

I take her out into the courtyard every time I come so she can get fresh air and see the trees and flowers, birds and squirrels - what passes for nature in a paved suburban enclave. I massage her shoulders - feeling the muscle melting away, more bone and less flesh each time - and try to make sure she is being properly taken cared of.

But "Mom"? Pretty much not there any more. Just a sweet old lady with a few of her memories (and fewer by the day).

Ethan is a soccer player now

And yet there is also this: Ethan woke up earlier than usual this morning, at the same time as Jake. Unable to fall back asleep, he joined us in the living room, and instead of his usual cranky not-ready-to-be-awake self, was incredibly helpful with getting Jake ready for school.

Ethan remarked upon the still dark at that wee hour, pondered the breaking dawn. He also kept track of the time and kept himself rather on schedule to get ready for school, too. And that was just the beginning...

I had a trying day today. Literally. An Impartial Hearing is in progress with the city's DOE over Jake's schooling, and today was an in-session day. I obviously can't talk about any of the details of it, as it is... in progress, other than to say: it's about as much fun as you imagine it to be.

The hearings are in downtown Brooklyn, and we are keeping our babysitting down to a minimum these days, which meant that Dan was in charge of the boys this afternoon until I could wend my way back to the Upper West Side of Manhattan.

I came home to find quite a scene: Ethan was in the middle of patiently helping Jacob with his homework (had gotten half his own homework done already, too).

You could have knocked me down with a feather. If you are at all aware of the normally fractious relationship between my boys (just this weekend, for example) you will be stunned at the miracle this event represents.

And then? And then? And then...

Ethan made dinner for himself and Jacob. Nothing elaborate, rather basic - organic hot dogs grilled in the toaster oven, cut up fruit, baby carrots, bread / rice crackers. But still, he took the initiative,  volunteered, followed through. Incredibly proud of himself afterwards (and rightly so).

So maybe another thing this month that's autumnal and waning is a good thing: Ethan's nine year-old obnoxiousity giving way to some incoming ten year-old maturity. A mightily welcome October surprise indeed.

And I'll leave you with a little more bit of October:

A live performance from The October Project - an old friend of mine's band from the 90s. They're lovely if you've never heard them. Haunting alternative rock. Had a few albums out. Enjoy....