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!)

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.

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.

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….

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 café. 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 ….

A Good Day to Be Born

To my twin sons on their 8th Birthday:

Eight years ago today, right now, at 5:30 in the morning, on July 29th, I was waking up after a short fitful night’s sleep more excited than I have ever been in my entire life, because this was the day I was finally going to meet you, for real, and hold you in my arms, and I just. couldn’t. wait.

It was a hot, hot summer, kind of like this one, which has been making me think a lot of that one. At 6:30 AM when your Dad eased me into the taxi as we headed out to the hospital, it was already 89 degrees and the air was thick, promising a miserable day to come.

But I was deliriously happy, and ready to burst open with my love for you, gulping in the vibrant soupy air that would soon be traded for hospital cool. 

Hospitals are strange places, white and clean and cold, and full of their own very particular ways of doing things.  There’s a lot of “hurry up and wait” and we just rode it out with infinite patience, because we knew that soon, soon, soon, you would be coming out into the world, and our lives would change forever.

We were about to cross that crevasse, the dividing line between parents-to-be and parents, never to look back, always to move forward, so a few more minutes at the threshold wasn’t going to hurt. 

Imagining it for so long, it is actually unimaginable when it finally comes: holding you in my arms, seeing your tiny faces, so perfect, so….. you!

They handed each of you to me so briefly, just to snatch you away again and do hospitally things with you -- big healthy boys, they needn’t have done that!  But in that moment, I looked into each of your eyes, and it was love at first sight.

There was recognition: yes, this is my son; and knowledge: I will love you for the rest of my life and much as I love you now; and fierce, fierce protectiveness: I will kill or die to keep you safe without a moment’s hesitation.

And it came so instantly and so fully on that it nearly took my breath away. I had waited my whole life to meet you, and there we were, finally, face to face.

And eight years later, it’s all still there. I love you each with all my heart, in spite of your constantly trying to get me to declare I love you more, Ethan. Because that’s the wonderful, amazing thing about hearts: they defy physics. We each have only one, yet their capacity for love is infinite.

I can love you, Ethan with my whole heart, with every fiber in my being, and I can love you, Jacob with my whole heart, too, with every atom in my body.

And yet there is fully room there for your father, and for grandma and grandpa, too. (Yes, we do still love people even when they have died, that is where they live on, in our hearts.)

And yet more room still, in that little organ, for all the many others I love and will come to love: dear friends and hopefully, someday, grandchildren (but not too soon, OK?)

So Happy, Happy Birthday my boys, this marvelous journey continues ……

Mourning in the Morning

This morning the sound of Ethan happily playing with his sleepover friend, Sage, would have brought me much happiness, except, except…. it made me cry. Made me cry because I almost never hear this in the morning in spite of Ethan having a twin brother. Because of Autism. 

Ethan is an 8 year old boy: they talk with their friends, play games that involve a lot of conversations, pretending and planning and even their battles are all words. “I am using water smite on you now”.  

And Jacob, he screeches like a monster and throws toys.  It’s not that he’s non-verbal, he talks a lot (actually all the time, but that’s another long post to come), but doesn’t have the ability to keep up with the rapid flow of thoughts and ideas exchanged in typical play.  He can carry on a conversation, IF it’s on his terms, his topic, and Ethan has just not signed up for that job.

Most mornings start like this… Jacob: “Ethan wake up, are you awake, Ethan? Eeeeeethan? Are you a robot? Ethan, are you a robot? Wake up, Ethan! Are you a robot?” Ethan: “SHUT UP JACOB!!!!!  Mom, Jacob is bothering me, make him stop, make him shut up, he is the stupidest most annoying meanest brother in the world!!!!!  Moooooom!”

And some days I am sanguine, take it in stride, separate them (as much as I can in a small apartment), get them (separately) busy, feed them (different breakfasts), get them ready for (their separate) schools or camp and summer school and their (separate) busy days.

And other days it’s hard.  The woulda-been, coulda-been, shoulda-beens bite me in the ass and I mourn the family we are NOT, the family time we just can’t have, the ease of two kids the same gender and age that I see taking place in the families of twins we know and hang out with.

This morning hearing Ethan so happy playing with his friend brings it all back, the dashed expectations: My sons will not be lonely they will have each other. Instead, today Ethan is happy and Jacob is lonely.  Most days they are both lonely, Ethan bothered, angry and Jacob hurt, rejected. And I can’t fix it, I just don’t know how, I feel like a failure as a mother. 

Maybe if I got up at 5 am to get everything ready so in the mornings I didn’t have to be busy, I could just facilitate and scaffold their interactions with each other. But what even then? Ethan would still want to play games whose sophistication is so beyond Jacob, and Jake would still be too loud, too physical, too repetitive for his nimble minded brother, so what then?  They could play successfully for 10 minutes, with me sculpting every moment, maybe, on the good days, and then, back to business as usual for the rest of the morning? And I got up at 5 freaking AM for that? Um, no thanks. 

I read a lot of true and fictional accounts of families with siblings both on & off the autism spectrum, trying to feel not so alone, trying to get into Ethan’s head, figure out how I can help make it easier. And you know what?  They all suck.  

Not because they are not wonderful, they are, especially this one: Rules by Cynthia Lord (who obviously has a kid on the spectrum herself). But because all those boys and girls (and for some reason it’s usually girls) while they may have difficult moments, when push comes to shove, they are unfailingly loyal to their Autistic brothers. Their parents describe them as their kid’s best therapist. And that is so far from happening in our house, I end up feeling worse rather than comforted, and no more clued in to what I can do to turn things around than before.

So, the sounds of happy morning playtime in my house are so rare. They do happen from time to time, when Ethan is feeling generous and happy and Jacob is being calm, his sweet funny self flying free, not frustrated by Ethan’s rejections.  

A few weeks back, on a lazy Sunday morning, they took all their stuffed Pokemon dolls -- I mean SOFT ACTION FIGURES (don’t want to trample boy egos here) -- and brought them up to Jacob’s top bunk, put them to bed and woke them up (Jacob’s oldest and most beloved pretend-play scenario) and had a whopping good Pokemon battle.  

I held my breath, tiptoeing, smiling, puttering quietly around the house so as not to break the magic yet.  Like an amateur juggler holding too many balls, I knew they were going to start dropping soon, but for just a moment they were all gloriously in the air, and all was right with the world.


NOTE: This was actually written 2 weeks ago on July 11th, so that’s the “today” of the post, not to confuse anyone who might have been at my boys birthday party today, actually, and be going “huh?”  I am just so overwhelmed these days, I wrote & then lost this until now, searching for something to throw up quickly to not be completely lame having gone a month without actually posting anything.