Tuesday, August 31, 2010

Flowers of Late Summer

It is the end of vacation, the end of summer, the end of August.  I am soaking up the colors of western Massachusetts, knowing that tomorrow I trade them back for New York City's glorious grays.

Old mountains, these Berkshires, soft, worn, folded, green, misted, rolling hills. A lazy dragonfly buzzing the pool, flashing iridescence. A sky so blue it begs for clouds. And the flowers, the lovely flowers enjoying their last sun baked glory, kisses of violet, gold, delicate pink sprinkled throughout the green.

I have always loved flowers.  I get this from my mother, who loves flowers and has taught me their many names.  We would walk the fields on vacations reveling in wildflowers exuberant abandon.  Even as my father was dying, a spectacular blossom would give her tears pause, lift up her spirits, move her with its ephemeral beauty.


There is bittersweetness here: the days shortening, the nights crisping up, even the heat bearable as we prepare to say goodbye to summer. 

And there is another goodbye shadowing our lives, looming over us as we swim and play: my mother-in-law is fading fast as the last blooms of summer.  


We have spent most of this vacation without my husband, as he was summoned back to the city to care for his mother through a hospitalization. Even back with us for a few days, he is tethered to the phone, trying to make sense of a constant stream of updates: blood oxygen levels, milkshakes consumed, waking verses sleeping states.

We rely on signs and portents to try to keep her ever more delicate health in equilibrium, but the scales are tipping and there is only so much to be done. 


Tomorrow we will jump in a lake, lap the pool a few times, and pack our bags (making sure the precious blue bear is safely tucked away.) We will eat one last meal at the much beloved, wonderfully kid friendly yet sophisticated Route 7 Grill, and return to the city to take back up the reins of our lives.

The children and I to prepare for the coming school year, my husband to prepare for what cannot be prepared for, the coming end of his mother's long life. 

Having just walked that path with my father this winter, my heart aches for him.


Tomorrow I will walk the garden, wander my mind one more time among the blossoms, carry with me these images soundtracked with the boys splashing laughter "one, two, three, cannonball!"

And hope to make it last through the coming winter, through the coming storms.

Monday, August 30, 2010

Always


Family vacation days are tough. There is always the dream of lovely and the reality of ugly and all the stuff that mostly falls in the middle.

Glorious swims.  Too much TV.  Ponies.

Breakfast for dinner.  Sharing out bites of the tenderest steak I've ever had.

Trips to the toy store "just to look around" that end in purchases (duh.)

Too much togetherness.

Waking with the sun.  Staying up way late.  Watching Jupiter rule the night sky.

Little sunburns.  Bumpy hayrides.  Sun warmed peaches heavy with juice running clear down your arm.  Mosquitoey itches.

7 am phone calls that are never good news.  Elderly parents going into the hospital. (Taking Daddy to the bus.)  Elderly parents coming out of the hospital.  (Picking Daddy up from the bus.)

Green snot.  Plans abandoned.

Beloved Aunts and Uncles.  An occasional found friend.

Lots of ice cream.  Too much candy.

Cannonballs.  Hummingbirds.

Brothers fighting.  Brothers playing.  Brothers screaming.  Brothers laughing.

Every night's whispered promise "I will always be your mom, I will always love you, we will always be family."

It is guaranteed that we will remember these days with more glory than we experienced them, but that's OK, it's just family myths in the making.

Saturday, August 28, 2010

No Sweat

My son Jacob is full of surprises. After days of torturing him all for the cause of learning to buckle his own seat belt, blogging about it yesterday, and thinking we've got more days of pain ahead, he has left me in the dust.

Today, I opened the front door and sent Jacob and Ethan out to the car, then had to pop back in for a forgotten something or other. (At a vacation house in the country, we're NOT home in NYC, don't worry.) 

When I came out again, mere moments later, Jacob was in the car, seat all buckled. Not a peep, not a murmur, job done. WOW. Happy dance!  I was so happy and proud for him, and of course I told him so. And then when we got back in the car after a lot of fun at Egremont Fun Day? The same (see picture above.)

And now, of course I feel like such a parenting fail for not doing this sooner, and vow to try to replicate this throughout his life when I find myself doing things for him that a typical eight year old boy (is there such a thing?) should be doing for himself. 

I will of course fail miserably at this vow, but at least I can remind myself of it from time to time.

OK, he still doesn't get the "straps go under the booster arm" concept, but that's the small stuff.  

And that, I'm not wasting sweat on.

Friday, August 27, 2010

Cruel to be Kind

The past few days have found me alone in a big house in the Berkshires with my two eight year old boys. There is a lovely pool out back, a big TV with a thousand channels of cable in the den, and not much else in the way of entertainment. 

And I have a pair of twins who, due to the nature of Autism's intrusion in family dynamics, have tremendous trouble playing together in even the best of circumstances. The few families we know who are sometimes here are now not, and did I mention that after a thoroughly hot sunny summer here in the northeast its been rainy and/or unusually cool since we got here?  

So yes, we have more time on our hands than is usual, and while in many ways the mildest word I would use for that is "challenging", in some other ways it's good. Useful even.  Because there's a bunch of stuff that Jacob needs to learn to do on his own, that he has suckered me into doing for him for years, and to turn that stuff around we need time, something of precious little abundance in our regular life.

In our hurly burly life back home when there are schedules to keep, busses to catch, and two kids to get out the door to two different destinations every morning, I often choose expediency over fostering self reliance. 

I know it's wrong, but if making Jake put on his own shoes means missing the school bus, I'll slap them on his feet. It's not that he can't do it, it's just that it can take up to 5 minutes, when I can do it in 30 seconds.  And I have to stand next to him the whole time, doing nothing else while it's going on, which means lunch is not being packed. 

Some days I have the time, some days he's fast and amazing, and some days I grab the shoes out of his hands and do it for him (wince.)

We normally live in New York City, Manhattan even, so car culture is not our culture. But here to go anywhere, do anything, it's in the car, out of the car, in the car, out of the car. 

So I've decided this is the perfect time to stop doing Jacob's seat belt buckling, and make him learn to do it himself.  

Jake has stealth helpless down to a science.  He will beg "help me, please, I can't do it Mommy" about things he is, actually, perfectly capable of doing. 

But they take effort, they take concentration, and they take more time if he does them himself, MUCH more time, so he is quite happy to have me do them for him.  Happy to have me do, and much annoyed and hurt when I don't. And that's where the cruel part comes in.

Even though he gets mad at me, even though I know it hurts his feelings as I sit next to him and watch him struggle with his socks, even though it feels cruel to hold back and watch his frustration grow as he fails and flails at tasks, it is actually the larger kindness to do so.

When I do FOR my son, I rob him of his chance for growth, competence and maturity. And that seeming kindness is the true cruelty. The fact that he doesn't understand why I refuse to be helpful mommy, why I seem callous and indifferent to his suffering makes it so much the harder.  

And while I say he's wily about these things, that's not really all of it. I can see he feels bad when he's not being so dexterous, about how long it can take him to get things right. When he feels like he's failing, he's genuinely distressed.

His self esteem is fragile and struggling over a task of self care Ethan easily handles makes him feel bad about himself... which makes me feel even more cruel when I insist he go through it. But through is the only way to the other side, to competency and success.  

I make sure to be upbeat and encouraging throughout it all. I tell him over and over that he needs to learn to do things himself, that he CAN do them and that it doesn't matter how many tries it takes before he gets it right.  I tell him I am helping when I coach him, that I will talk him through every little step, demonstrate it; but the hands, the muscles, the physical effort have to be his.

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. That it took every fiber of resistance in my being, every time I was able to not jump in and rescue my miserable, frustrated son. 

Today I found the fortitude to squat beside him, while he sat in the car, next to him but not leaning in; to recite, to demonstrate, over and over, how to pull the belt across, remind him to tuck it under the booster arm:

"Use two hands, two hands, two hands, like this (hand over hand), look at the buckle, yes look at it, pay attention Jake, hold the catch steady, two hands, Jake, yes, you can do it, you can.

Jake look at me, look into my eyes, I believe in you Jake, I'm your Mom and I know you can do this.

OK now look back at the buckle, line it up, push, do it, push harder, push harder, no, look at what you're doing, line it up before you push, yes like that, two hands Jake, yes, listen for the snap... did it snap? 

YES, you did it, you did it, Jake, all by yourself! I'm so proud of you, my big boy." 

Tomorrow's goal: getting it under 5 minutes.

(And guess what? He DID IT!)

Thursday, August 26, 2010

Tune in again tomorrow...

...because I am about to try something new here.  I am about to become a regular blogger.

I have realized that I put way too much pressure on myself to come up with impressive and "important" posts.  Maybe it's because I started blogging as my father was dying and the words just tumbled out of me all intense and poetic as I was facing the first big death in my life, like here. Or because I have special needs kids, and have written posts that I worked on for weeks, after first mulling over and thinking about the big ideas in them for years, like here.
 
But I have decided to cut myself a break, and let myself be a "regular" blogger. Regular in both senses of the word.  First off: frequent, hopefully daily (you all know what regular I'm referring to here, right? don't make me spell it out for you.)  Secondly, regular as in "what is regularly done"; what so many others do, and what blogging is so gloriously good for: sending little postcards from my inner and outer life, sharing snapshots of the moment. I want to write "today" in a post and have it actually BE the today I'm writing about, not over ruminated and 2 weeks later. 

The "big" posts will come occasionally, there may even be important ones from time to time.  In the meantime, I can let out all those thoughts, feelings, observations, rants and shouts that I have been jotting down, trying to mold into something "more" before it felt OK to send them out into the world. Screw that. This is my soapbox and I'm going to have fun with it.

So stay tuned tomorrow for a short snippet of random fluff from my brain. That is all.

Saturday, August 21, 2010

The BlogHer10 reflections of a very. slow. newbie. blogger.

OK, I’ve done it again. Let a post I “have” to write sit and simmer inside me, getting written and re-written over and over in my head and not feeling like I can move on and write anything else until it comes out.

And I have so many other short, sweet posts jammed up behind it that would have been timely “this happened today” moments but by the time they can flow, the “today” is no longer today and then it all feels weird turning the present into the past, losing the immediacy. See, this is how I tie myself up in unnecessary knots.

This is why I am such a damn slow blogger. I haven’t gotten the hang of it: letting the magic just be. This is the supposed beauty of blogging, letting what bubbles up, bubble up; shape it a bit and then let it go float out into the world: here it is, look at its beauty…pop…move on.

Maybe I am too old, old school, too tied to the idea that my words will live forever in the inter-ether. Maybe I’m too linear. I really felt like I had to get my BlogHer wrap-up post out (2 weeks ago!!!) before anything else can come. Kind of like… well… if you’ve ever had kids, and they’ve ever eaten too many bananas…. I don’t need to elucidate the analogy, but let’s just say it will feel good to get this out and move along.

So, unfinished, raw, barely still relevant: Here is my BlogHer10 Post-mortem-wrap-up post. For those of you with no interest in this world, I once again beg your forgiveness for this navel-gazing blog post about bloggers and blogging and my experience at the weird, wild, wonderful thing that is the BlogHer Conference.

It’s over, and after this post I will seal my lips, never to speak of it again… until next summer that is (but that’s a really long time away, honest) and it will be safe to come back and read me after this, really.

Let’s start off saying that the reason it has taken so long to get this thing off the ground is that I had an odd, strange, mixed bag of an experience at BlogHer. I had some amazing moments. I didn't mope. I had a generally great time. I don’t really know what more I was expecting, magic, maybe? And it didn’t quite happen for me. And I know for a fact that it wasn’t the conference, it was me.

I managed to be in the right place at the right time, much of the time, like here, in the women’s room outside the People’s Party on Thursday night.

I walked in, introduced myself to Jenny, The Bloggess (helps that I am no longer shy) hugged her, and hung out while Annissa and a few dozen others slowly filled the room. It was awesome, and yet…


I met up with some amazing women that I had only known online before, like Sandie, aka UrbanMama (who also blogs about grief, although we mostly gossiped about movies) and many, many more…

I met some amazing women I had no idea existed until I met them at the conference, like Christine Moers who became fast friends with my new friend Sandra, the kind of connection I have always made at conferences, but not this time…

The beyond lovely and talented Karen of Chookooloonks wrote on my arm: “Evolving” because I was definitely a verb, not a noun, in a thorough state of flux …

The special needs parenting community was fierce, starting with the “Blogging Autism” panel, the first morning. Meeting and connecting with BlogHer special needs parenting editor Shannon Des Roches Rosa of Squidalicious, and Stimey, and Ellen, and Julia, and... (too many amazing women to name here, see Shannon’s post) was a definite higher than high point…
 
Suddenly, Neil was there, and I was shocked, knowing that he had gotten the call that his father-in-law had died just as he was about to board his plane from LA a few days earlier. He looked a little shell-shocked himself, and has written his own “there and not there” post about the conference. Reading it, I realized that even though it’s been almost six months since my father has passed, maybe I had still not been quite ready for the big noisy happy...


I went to a lot of parties. I had fun. I danced. But not with wild abandon, not like I meant it…





I was standing next to Jory, 4 feet away from Greyson Chance as he charmingly sang his heart out….




It was an AMAZING conference, and I am so glad I went. But I was not completely inhabiting myself. I have never felt so present and remote at the same time. It was like this photo:


There, but with something between me and what’s right in front of me, and a bit out of focus, to boot.


I have been worrying at this tangled mess ever since, picking at threads, trying to figure out why. Part of it was that going home to my own bed and family every night left me out of that “being out of place and time” magic, kept me too tethered to my real life: lunches to pack, children to kiss and cling to me, husband anticipating me home at a certain hour.

And the Sunday after, when the city was everyone’s playground: my kids owned me lock, stock, & cranky mommy barrel.

But that can’t be the whole answer.

I don’t know if I bring all of myself to anything these days. Part of me is still in that little room holding my father’s hand, watching him die a little more each day.

Part of me is still sitting in the little room where they first tested Jacob six years ago, where the psychologist asked if I noticed that he climbed on me like I was furniture, that he didn’t seen to care when we called his name, that in spite of the obvious joy that suffused him, that’s not the same thing as relatedness; the room where I was told that my happy, loving boy was not just speech delayed, not just “dreamy” as a rather useless speech therapist had reassured me, but was actually Autistic.

I leave parts of me behind in so many places, and silly me, I forgot to pick them back up again, finding myself rather less than my full self for some time now. And it took BlogHer to make me see it.

And I could blame it on the ADD, but that’s too easy. And I know, now, I need to gather those pieces up and stitch myself back together. I’ll need a few patches.

There’s going to be some hot glue involved. Maybe even a little wholesale reinvention. But that’s what they made the internet for, now, isn’t it.

Tuesday, August 10, 2010

I am a Hopeful Parent, officially!


I have always been hopeful about my children and their future, in spite the many challenges our family faces. This is also in spite of the fact that by nature I am a glass-half-empty person who has consciously and willfully chosen to work hard to see the half-full glass before me. 

So I am happy and proud that it is official: today I am a Hopeful Parent, with my first monthly post up on their wonderful site about parenting special needs kids. Go read it here: “Happy Birthday to Me.”  And look for more posts from me there on the 10th of every month.

Oh, yeah it’s also my (50th) birthday today. So start singing….

Wednesday, August 4, 2010

Look, Ma, I'm going to BlogHer

Here it is, finally, my (obligatory) BlogHer Conference post. (It seems like everyone is doing one and I hate to be left out.) 

If you’re not a blogger and are just reading me because you’re my friend, or you really care about Autism or you are caring for old/dying people, you might want to skip the rest of this as it will probably bore you to tears. (Then again I might tell the tale of nearly puking in James Caan’s lap, so maybe you'll skim through looking for the juicy parts instead.)

If you want my best post about Autism go here, saying goodbye to my dying father go here. If you’re up for a ramble through my mind as I ponder the upcoming BlogHer 10 conference, being held right here in my hometown (NYC), then stay on board.

First let me say that this is not a “how to” for BlogHer. This is my first BlogHer conference, and while I’m a terrible know it all, capable of spouting off expertise like an expert when I’ve barely scratched the surface, that would be even too much hubris for me. 

Hell, I’ve only been Blogging for 6 months making me a complete newbie about this in every sense of the word except, well, except that I have been writing my whole life, even if sometimes just in my head, like my friend Kirsten from Nilsen Life has been recently. 

And that other type of BlogHer post about anticipatory anxiety, well I’m not there, either. Much. I’ve been thinking about why I’m so calm when others quake and realize it’s for a number of reasons.

First is that this has been such a crap year with my father dying and all, (and my mother such a wreck, and needing to find a new special ed school for Jacob) that I just can’t take the small stuff seriously right now.  And while I’m not downplaying social anxiety, know it can be horribly debilitating for some (and perhaps for a disproportional percentage of bloggers, who have been known to spend more time with their computers than with their friends), Death is a big wake up call, as it were, sorting the wheat from the chaff in my life in so many ways. 

Also, while this may be my first BlogHer, I am not new to conferences, having spent years attending them or working them behind the scenes. Once you’ve been on the other side and hung out with the man behind the curtain, when you’re the puppetmaster putting on the big head and flames show, there’s not much there to angst about. 

It’s going to be a bunch of people, mostly, but not all, women. Some I will know for real, others I know via their words. Some I have such an intense connection to from our reading each other’s blogs, tweets, emails and back and forth, comments on each others posts that I consider them my friends and feel it is astonishing that I will be seeing them in real life, hearing the timbre of their voices, finding out they are taller shorter, rounder, scrawnier than I had pictured, for the first time, this week.

I am so sad, devastated really, that Kirsten won’t be able to be there (you can read about her fatal scheduling fail here) because her words and spirit move me so.

I’m sure there will be “famous” bloggers I sit next to and talk with and fail to recognize, gabbing away at them, possible even name dropping in a completely embarrassing manner (because that is one of my glaring flaws, in fact I can promise that I will shamelessly name drop at least once in this post, just keep reading) only to afterward look them up and realize I should have known who they were, should have listened more and talked less (another personality flaw.)

And yes this has already happened at a pre-BlogHer meet up. Should have paid attention to clues like, oh, that she’s speaking at the conference even though she’s not primarily a blogger (just a media uber-professional, a verbose & funny social satirist tweeter, and oh, called a “well connected” member of NYC’s cultural elite in this week’s New York Magazine.) Doh!

My years of painful gaffes at Sundance, SXSW, The Toronto Film Festival, and the Edinburgh Theater Festival should have either cured or inured me to these embarrassing moments, but I am sure they will come again and again. Like the time I nearly puked in James Caan’s lap. But more on that later (will I stop at nothing to tease my readers and keep them reading? No, it seems, not at all.)

I am also remembering the magic that can happen at conferences when you meet strangers and become instant compadres, tumbling together into all sorts of adventures and misadventures because, well, why not? 

All this from my pre-children glory days of course, when I was up until dawn many nights, something I just don’t do anymore, unless it’s momsomnia or I am up at dawn with an early waking child. And my tales have a long ago and far away feel to them, even to me who was there (was I really? It barely seems possible now that my world has contracted so.)

My last conference before this was Sundance in 2002, and I gotta tell you, 3 months pregnant with twins at 7,000 feet was perhaps not my most brilliant decision. 

I went with my husband for the very first time because I thought I might need a caretaker. Um, that would be yes. He held my hair back as I puked into a garbage can at JFK airport, mouthing “pregnant” to the security guards so they wouldn’t think “drunk and disorderly” in their immediately post 9/11 jitteryness. 

I mostly kept it together in Park City, moving slowly, forgoing late, late nights, but there was one evening at a fancy restaurant when my delicious scallops suddenly decided they were on a round trip trajectory.

James Caan was seated at a table directly between me and the rather distant ladies room. He looked up and smiled at me as I lurched by, will never know how close his lap came to being the repository for my violently rejected dinner.  

Also at this last Sundance I finally had the good fortune to have a personal connection at one of those “guest list” only sponsored  chalets: a restauranteur friend of mine was the private chef at “Reebok House.”  I could really have cared less about the prime swag or the shoulder rubbing with medium size celebrities, it had all a pregnant woman in her second trimester needed: a peaceful atmosphere and abundant healthy food that didn’t nauseate me.

I did however, have one encounter that tickled my fancy: Julie Benz (who I knew as Darla, the pregnant vampire on the TV series Angel) chatting me up about babies and rubbing my pregnant belly for good luck. And yes, she was very polite and asked first.

If I can squeeze in one more name dropping story, before I hit the bitter end here: one night at the Toronto Film Festival I somehow got myself invited to one of the tonier sunset cocktail parties at a lovely outdoor cafĂ©. I found myself plopped down next to legendary French film director Agnes Varda, whose film “The Gleaners and I” was premiering there. 

I speak no French, and she not much English but a friend at the table was happy to translate so we could carry on a delightful conversation about how my first name was the same as her last name, a situation neither of us had ever encountered before. I told her that the evening I had met my husband, upon being introduced to me he had quipped “Not the filmmaker Agnes Varda?” 

This probably sealed my fate: witty and knowledgeable of French independent film – perfect for each other (little did I know he was semi serious; he knew her name vaguely, but not her work, had no idea she was a French woman of some years.)

But I digress… Agnes told me her father was a Jew from Greece, and I told her my name meant “wild rose” in Hebrew. We talked a while about this and that, and I am sure I was swept from her mind five minutes after she passed on to another conversation. For me however, our time together is a sparkly trinket in my memory cache.

But this has now gone on and on, way past the length a proper post aught to be. But perhaps that’s all for the good, as it will properly prepare you to meet me at BlogHer, where I am likely to go on and on too, way past the point where I should stop, and start to listen. You can step on my foot, gently, to remind me to shut up, if need be. It’s alright, I give you permission. 

And in spite of all this “been there done that” talk, I’m really, excitedly, looking forward to this conference: to finally meet up with women I have read and admired; to those serendipitous moments when the magic happens, and I find myself engrossed in life changing conversations with people I have never met or imagined before; and to finding new ways to embarrass myself in public.

Maybe I’ll even get to spill a glass of wine on Jenny, The Bloggess’s red dress, you never know ….