Telling stories

"Tell me a story about yourself, Mommy, tell me about you, Varda," Jacob asks at dinner the other night.

And although he only listens to the first three words of my answer before he's on to his next question, it's a start.

A big start.

He's been talking a lot about family lately.

"Mom and Dad, you're my family." He says, with an intonation halfway between statement and question.

"Yes we are!" I confirm.

"And Ethan is my brother." He ads.

"That's right, Jakey."

"We're a family!" I reinforce.

"Daddy was a boy? Now he's a man? I will be a man?" (Right on all counts.)

"Daddy and Mommy get married?" (Yes we did.)

"Get married you can kiss the bride?" (smooching sound effect included) (Yes, we did.)

"I will grow up and be a man and get married." (Dear God I hope so)

"Yes, Jakey."

And now, lately: "Mommy I'm going to marry you!"

And while I smile and explain that I'm already married to someone - Daddy - and he will have to find his own special person to marry when he grows up, I'm secretly glad he's said it while we're home. When he makes statements like this when we're out and about, I can see people doing a double take.

Unless Jake's been especially flappy or grimacey, they probably haven't expected him to be anything out of the ordinary, "passing" as it were, until the oddness of our conversation begins to become evident.

Also I'm mentally ticking off that box in my mind on the page of developmental milestones: Oedipal age - check!

In a "typically developing" boy that comes on about age four, and I seem to recall Ethan having similar romantic notions about me 'round about that time. And it also fits with where Jacob is in a lot of other ways, "socially/emotionally," as they say.

I kind of forgot how completely exhausting four year-olds can be...  the thousand questions, the need for constant attention, the wanting to do complicated things themselves, and then the tantrums when it doesn't work out as planned.

That all this four-year-oldness comes wrapped in the body of a 120 pound, 5 foot tall, near eleven year-old makes it all the more unsettling for strangers to witness. Though of course that's just normal for our family, things being other than they would appear to be at quick glance.

"Blue Bear needs his family to go to bed with him!" Jake firmly asserts at bedtime tonight. And so I round up the white, turquoise and sky blue bears that we have long ago designated to be his mother, father and brother (although sometimes it's a sister, depending on Jake's mood), tuck them in beside him, sing them all to sleep.

"Mommy, sleep with me!" says Jake. And though I know I can't stay, that my presence will be too exciting, will keep him awake, I lie beside him for a few minutes as he recounts his day to me, telling the stories as he remembers them:

"Mommy and Jacob went to the movies and saw Turbo. We saw the credits and the music and it was 20th Century Fox."

"And Jake and mommy went to the grocery store and bought three things." (More like 20, but who's counting.)

"And then I laughed too much and said the stupid bad words and Mommy got cross. I caused confusion and delay. Mommy is going to fire me."

"No Jakey sweetie, you needed to calm down because it was bedtime, and I'm not cross, not mad, you are NOT a bad engine, just a bouncy one. And you can't be fired."

I stroke his head, drop another kiss upon it. "And even when I do get mad, Jakey? I never, ever stop loving you, not even for an instant."

"Know this: I will always be your mom, you will always be my son, and I will always love you, forever and ever. Nothing can ever change that."

And we lie quietly for a moment.

One moment's silence.

And then I kiss him again and ease my way out of the room.

"Goodnight, Mother" he lofts at my back as I slip away.

"Goodnight Jake, I'll see you in the morning."

And I will.

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:

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?"

WHAT?

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.

Wh-WHAT?

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?"