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.

A Little Respect

The other day a miraculous thing came in the mail: a letter addressed to my son Jacob, the one on the Autism Spectrum who has no real friends of his own yet, and never gets mail. The letter came from the Admissions Director of the new school Jake will be attending in the fall. 

Those who have been aware of my struggles to find a school for my son for next year will read these words and know the tonnage of the weight that has now been lifted from my heart.  

Jacob has not been an easy child to find a school for.  Too related for the Autism schools and too Autistic for the LD (Learning Disabled) schools - and also with too large a language disorder for the wonderful Aspergers program that shockingly does exist in our NYC public schools (the ASD Nest program) - he is a classic “falls though the cracks” kind of kid.  Not that we would let that happen to him, but still, this has not been a fun year. 

Let me say that again, because I like the saying of it: my son Jacob now has a school to attend next fall. And not just any school, a wonderful one that felt so right from the moment I walked in the door, and stayed that way through every interaction I have had with every staff member of the school.  

I have felt there to be an overriding (and sadly rare) combination of warmth, caring, intelligence and respect that I did not know was exactly what I was looking for until I encountered it, and then it left nearly every other school sadly wanting.  This school, though private, is neither fancy or shmantzy, but it is perfect for Jake right now, and so I sigh the deepest sigh of relief a parent has ever exhaled.

But I am digressing again (I do that, I have ADD, remember?) and I want to come back to this letter.  A few simple paragraphs. Nothing fancy, or shmantzy, but it made me cry.  Read it here (with a few specifying details fudged) and you will know why: 

Dear Mr. Jacob F.

Congratulations!  We are pleased to inform you that you have been accepted to the Level II class at the XYZ School at (address) for the 2010-2011 school year.

Within the next week, your family should expect to receive an envelope with enrollment materials.  They will also receive a phone call from our main office, asking to set up an appointment for an enrollment meeting.

I am delighted to welcome you and your family to the XYZ School.  We look forward to a successful year and a long partnership.

Sincerely,
B.E.
Director of Admissions 

If you haven’t figured out why this made me cry, here it is: the Director of Admissions sent this letter directly to my Autistic almost 8 year old son. To HIM, not to me.  What that simple act communicates is a world of import, summed up in a simple/not simple word: RESPECT.  

Jacob is being treated like a person, a person to be talked to, not just talked about.  He is not “being placed”, he is being welcomed into a community.  And this makes all the difference in the universe.   

I sent an email to the Admissions Director, telling him his letter had made me cry, and also telling him:

“I want you to know that your short, simple, warm letter so elegantly communicated a level of respect for your students as people and members of a community.  I have not experienced this anywhere else in his education to date, and now that I know it is possible, from this point on I will expect no less for him, ever.  Thank you.”

And this is what I want to pass on, to say to all of us, parents of children with special and with ordinary needs (no, calm down, I’m not calling your kids ordinary, yes, they are all special) of children with and without IEPs (although to quote a friend “isn’t every child an individual, and shouldn’t all Individuals have their own Education Plan?”)….

I say this:  R-E-S-P-E-C-T (nods to Aretha)  Expect and demand no less for our children, ever!

Fathers Day Without a Father

 Me, Mom & Dad . 1962

It is Fathers Day, and all the posts I started to write about my (mostly) beloved, recently departed father have dissolved into dust, sputtered out, words tumbling over themselves into the void that used to be filled by a man: my father, the photographer Jim Steinhardt. I have yet no distance.  It's too soon, I'm too raw and the tasks of cleaning up his life are still upon me.  

I've spent days in the empty rooms he and my mother so recently occupied sorting though his many thousand photographs.  Lobbing thin notebooks full of his words, thoughts, wild ideas, and great plans into boxes, I am not able to throw them out, but completely unhinged by cracking them open, watching his familiar looping hand growing increasingly wobbly as time took its toll.

I need to pay tribute to him, to our loving, complex, father/daughter relationship, but can say no more today, a day spent with my husband and sons, the menfolk of my family now.

So, if you don't mind, I will point you back to some old words I've already written about him:

Here, the eulogy I delivered at his memorial service, three months ago.

And here, about his last clear days.

And here, a post written very close to the end, about letting him go.

I will always have a father, here with me in my heart.

Victorian Gardens Magic

NOTE: This post originally appeared on the sadly closed NYC Moms Blog.

This Saturday I ignored dire predictions of afternoon thunderstorms and took the boys off to that tiny jewel of an amusement park that wings in to perch in Central Park’s Wollman Rink for the summer  (Memorial Day through mid September): Victorian Gardens.  We’ve been taking the boys there a few times a summer since they were three, and though they are nearly too old, too big for the pint sized thrills therein to be found, we’re squeezing one, maybe two more summers out of the place, because there’s some sort of magic there for the boys and I’m not ready to let it go yet.

I remember the first time we went, it was the whole family, all four of us: me, my husband, and the boys.  They were still tiny, not yet quite three, and we rode all the rides with them, grown ups with our bent knees approaching our ears. They loved being on the really little kiddie rides, which were just right sized droplets of thrill for them.  By the next summer, at four, our services were only required for some, not all rides (just the "really scary" ones), and my husband and I stood by in trepidation as Ethan took charge of his twin brother Jacob, making sure he stayed safety belted and didn’t try to climb out mid-ride.  For you see, Jacob is on the Autism Spectrum, and at four was still very un-awake to the rules of the world, needed a minder at all times.

This was my husband’s last foray with us there, however, because while they may be named “Gardens”, it’s mostly a misnomer.  But really, who would come to “Victorian Hottest-shadeless-circular-patch-of-sun-blasted-cement-in-the-city”?  Oh, yeah, it’s surrounded by Central Park lush, but inside: bake-a-rama.  And my husband, well, he melts in the heat. Hates heat. His idea of perfect weather: Seattle. In winter.  So we no longer torture him by making him come drip with us. Because no matter what the forecast, and this Saturday it was “cloudy and cooler with a strong chance of thunderstorms”, it’s ALWAYS hot and humid when we go.  The kids don’t care and I just sweat and bear it because they always have such a wonderful time.  But the whirling fun, while terrific, isn’t the magic, it’s the co-operation. Because you see, my boys don’t always get along, and lately it’s been like oil and water.  And that’s on the calm days.  On the bloody ones, it’s more like oil and flame thrower.  The full history is too long and complicated to go into here, but let’s just say that having a twin on the autism spectrum is really hard.  And being the autistic twin of a brother you love, who currently wants very little to do with you is really hard, too.  Yet somehow, at Victorian Gardens magic things happen.  The boys don’t fight.  They ride rides together, laughing.  Every year Jacob needs less and less help, by now just little bits, here and there, and here, at Victorian Gardens, Ethan is willing to provide it, patiently.  It’s actually something approaching a miracle.  

Thinking about writing this post in praise of our little magic patch of amusement, I stumbled upon something I had written last summer about this very phenomenon. Here it is: 

I am absurdly happy watching my sons be happy today on the flying swings.  Ethan does not hate his brother today.  When I go in to help Jacob onto the apparatus, Ethan shoos me away saying “I can help him, I want to help him, I can do it” so I back off, let him be the big, helpful brother to his twin.  Something I never envisioned 7 years ago when, large as an overripe fruit, I lay about waiting to bust open and birth the twins.  An only child’s fervent fantasy: my children will never know loneliness, they will always have each other.  They will not spend countless childhood hours in front of the mirror practicing funny faces, creating a playmate, an other, out of the reflected self.  I never counted on Autism, on this: that Ethan and Jacob are and are not twins.  Womb shared, room sharing they are.  But partners and age mates not now, not yet, questionably ever, though I’ll never say never.

I still tell the story, though it would horrify him now, of Ethan and I in the car when he was 4.  We had dropped off Jake and I was driving the 10 blocks to Ethan’s pre-school.  He was in the back seat, when he said “Mom, I wish that Jake and I both had had Autism or we both didn’t have Autism.” Tears jump out of my eyes “Why honey?” “So we could be the same and go to the same school.”  Glad he’s facing the back of my head so he doesn’t catch the tears streaming down my face now.  So understanding and compassionate at 4.  Jump ahead 3 years to the fighting, hitting, screaming “I hate you” – where is that sweet boy?  Buried under years of longing and disappointment turned bitter and angry.  Bitter and angry at 7 – how did it come to this?  Too big a burden to be a twin but older brother, yet I ask him to shoulder that load every day.  


And so it continues this year: we have a day of (mostly) peace and fun, stay out till late, watch the first fireflies come out in Central Park as the boys scramble up and down rock "mountains" on the long walk home. And I quietly hold my breath, waiting for what tomorrow will bring.