Ethan wants to tell you about Playing with Autism

Ethan, recently

A while ago, Ethan wrote a lovely essay for school and I published it here: Ethan takes over my blog today (the world tomorrow).  Ethan loved that I shared his writing with you all, and I promised I'd let him take over my blog again.

Well, it's been two years, but he has once again written a beautiful essay for school (6th grade) and he is happy to have me share it with you here, today.  The assignment was to write a personal essay, and start with the words "I believe":

Playing With Autism

by Ethan

I believe that when you help someone or cheer them up, it makes you feel good. That is what I do with my twin brother Jacob, who has autism. Autism means his mind works differently, especially around words. It’s not really like having a twin. He is more like a little brother, even though he is bigger than me.

Play fighting is my brother’s favorite game. His favorite place to play fight is in my bed. To him, a play fight is actually reenacting part of his favorite tv show, Dragonball Z-Kai. In mid-fight Jacob started quoting an episode from the show. Then he started making weird motions with his body then got right back into the fight.

Jacob doesn’t know his own strength. I had to tell him to go easy, when he hit me so hard I could see the whole Milky Way spinning around my head!

It isn’t easy having a brother so strong, who acts so young. It’s like playing with Superman. He kept asking me to smack him harder, but I can’t stand striking him. I did it anyway. He’s not made of ceramic, after all.

During one of our battles, I ended up riding on his back like a cowboy busting a bronco, tearing through the entire house. I got pretty good at it. Maybe I should take riding lessons on a dude ranch.

Jacob needs me to play with him because he doesn’t really have any other friends. There is one girl from his school that plays on his special needs basketball and baseball teams, and sometimes they go to the movies on weekends, but that’s it.

Jacob says “Ethan, you’re my best friend!” and that makes me sad. I have lots of friends who come over to my house and we do all kinds of things together, but Jacob just has me. Jacob knows the names of all my friends and is always asking for them to come over. Most of the time they ignore him, but some of them will be nice and try to play with him a little, or answer some of his funny questions like “Who is your favorite engine?"

He is always asking me to play with him. “Play with me, Ethan. Play with me, now!” Sometimes I feel like it, but a lot of times I really don’t. When I say “no” he keeps talking to me. “Hi, Ethan” he will say, over and over again, even though we’re still in the same room. So I put down my book and play with him for five minutes.

When Jacob is grinning like a hyena, he looks so happy and I feel great. It is like his joy flows right into me. When I see him happy or just cute it makes me the happiest man on earth. Cheering him up cheers me up. There is only one thing better than seeing my brother, Jacob, happy, and that is making him happy.

*~*~*

Pretty heady stuff for an 11 and a 1/2 year old, no?

Also, in the name of full disclosure, I have to tell you that this is written from, shall we say, Ethan's best, most idealized self.  There are still plenty of "I wish I didn't have a brother" days, but there IS this kindness and empathy too, all mixed in.

Thank you, Ethan, my lovely son, for your wise and loving contribution to my blog today. I can't wait to see what you will come up with next!

And now for something completely different...

I know.

It's been such a long time since I last posted on my blog, something I never thought would come to pass. And yet as the days stretched on it became harder and harder to post. Once again there are a thousand half-written posts in my queue, ten thousand in my head.

But today, finally, I have pushed through the quicksand to bring you....

A recipe.

Wait... What? Have I lost my mind and suddenly turned into another person?

Nope.

I know you're thinking "What about the end of summer and Ethan's camp and Jacob's camp and the annual family vacation in the Berkshires and my mother's birthday and back-to-school haircuts and back-to-school and the whole middle school transition thing and school bus nightmares and... and... and...?"

Well, yeah. I have all those stories, too. And maybe some of them will get to spill out here. But I can't keep going backwards, I can only slog forwards right now.

And I have to start somewhere, and so that's today...

And so here's my recipe for Banana-Cranberry-Panic Muffins:

Wake up at 5:30 AM

Try to clean up as much of the kitchen as possible, unloading the dishwasher and reloading it, making a neat pile in the sink of everything that doesn't fit in, so that there's room to wash the strawberries and fill the filtered water pitcher.

Wash the strawberries and fill the pitcher.

6:00 AM Wake up your autistic son for school, who is, thank goodness, in a very happy mood this morning, bouncing around and wanting to to talk to you about everything. Wonder if this is because you ran out of one of his medications and so he didn't get it yesterday.

Consider whether there is a viable trade off here -- he is definitely more hyper/bouncy/distractable. Yet also happier and more related, talking and pointing and wanting you involved in everything he is thinking and doing. Great eye contact.

Make note to call psychopharmacologist to discuss. Also his teachers to see if he drives them crazy today or not.

Get your son dressed, fed, packed-up and on the bus.

6:55 AM As you go over the morning schedule for you other son in your mind - early school day, as its the "Back-to-School-Meet-the-Class" breakfast in his homeroom this morning - PANIC as you realize that you are supposed to contribute baked goods to this breakfast and you forgot to buy anything.

Calculate that there is no way you can get to the store and back and still be on time today. Also understand that there is no time to pick stuff up "on the way" and that there is no great bagel & coffee place right around the corner from his new middle school like there was at his old elementary school. Silently curse change again.

Have a brilliant idea: it only takes 10 minutes to whip up muffins and they can bake while you get your son up/make his lunch/get him ready/get husband up/get yourself dressed.  And so maybe you'll be on time and with still-warm home-baked muffins in hand, and so his homeroom teacher will continue to like your son, and you will not fail the Mom-game today.

Remember you have some frozen over-ripe bananas, so banana muffins it is!  When you open up the freezer to get them, a bag of frozen cranberries falls out and misses your foot by and inch. Kismet! Banana-cranberry muffins then.

And begin.

<*> <*> <*>

As is usual with my cooking, I looked up a coupla-three recipes to see what the basic ratios were, what they had in common and any interesting variations, and then I winged it with what I had on hand.

We arrived (nearly) on time. The muffins were a big hit. Ethan said: "Mom the sourness of the cranberries goes great with the sweetness of the muffins!" And he ate two. Win!

And so here, finally, is the actual recipe:

Varda's Banana-Cranberry-Panic Muffins:
(you can skip the panic if you prefer)

2 cups whole wheat pastry flour
1 teaspoon baking powder
1 teaspoon baking soda
1/2 teaspoon salt
2 really ripe bananas, pulverized
2 eggs
1/2 cup milk - Buttermilk would be nice, too. Or almond/soy/rice milk if you want them dairy-free.
1/3 cup liquid shortening - I used coconut oil. You can use melted butter if you like.
1/2 cup sugar - white or brown or combo is fine. I used raw turbinado sugar.
2 tablespoons maple syrup
1 teaspoon real vanilla
1 cup cranberries

Mix dry ingredients together & set aside. (Most recipes say "sift" and you can if you want to. Me, I'm too lazy for that and besides, I lost my sifter two moves ago.)
Mix everything else except the cranberries together, well.
Fold the dry ingredients into the wet and stir until just combined (don't over-mix).
Stir in the cranberries.

Fill lined or greased muffin tins to just under the top.

Bake in 350 degree oven for approximately 25 minutes.
Note: I made full size muffins. You can make minis or a loaf if you want. Bake time for mini-muffins is probably10-15 minutes, for a small loaf I'm guessing 35-40. You'll figure it out.

NOTES:
When my bananas get over-ripe I just pop them in the freezer, skin and all. To use, I microwave for 30 seconds, peel off the skins, remove any yucky bits and then microwave for another minute or so in a bowl until completely thawed.

I used frozen cranberries that were a bit old and wrinkly - to restore them I just filled a bowl with hot water at the start and popped the berries in for the 5 minutes while I mixed the rest of the muffins up. When it was time to add them they were plump and thawed.

<*> <*> <*>

Hey, that was fun! Maybe more recipes with stories to follow... maybe not. No promises, but let's see what the future will hold.

(And its nice to be back.)

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.

I Listened to a Bunch of Mothers (and some non-mothers and a cool dude) on Mothers Day

So, the second annual NYC Listen to Your Mother Show has come and gone. I would say it completely dominated my life for the past month, but that wouldn't be quite true.  It had a lot of competition from my Uncle's decline and death and Jake's IEP and Ethan's... well, you get the idea.

But it DID dominate the awesome in my life. And having something major and all-consuming to do on the first Mothers Day without my mother was, frankly, a godsend. I know I have just side-stepped the pain, that it will hit at some point, but if I can put it off just a little longer, that's fine with me right now.

(I haven't even finished my "first Mothers Day without my mother" post which is sitting half-written on my computer. Every time I go to it and see the picture of the two of us last year on Mothers Day I just get too sad, and let myself get distracted by Facebook and the Twitterverse.)

The show was... well, it's hard to find words to describe it... wonderful... glorious... moving, inspiring, side-splittingly funny, heart-rending and thought provoking, all in turn and often simultaneously.

And I can say this without seeming conceited because I was just a small cog in the great works of it all. What an awesome talented bunch of folks up there on the stage and behind the scenes. It was an overflowing vat of wonderful, all around.

My co-producer & directors - Holly Rosen Fink, Amy Wilson, and Shari Simpson - were amazing to work with. They all really carried the day when I was less than my 100% capable self, due to my mother's dying in January just as the production was ramping up.

And the cast... well, you're just going to have to watch the videos when they come out on YouTube soon.

The experience on Sunday was lovely for everyone, in the cast and audience alike. And if you weren't able to be there, I hope you can come next year. And if you're not near NYC there's probably a LTYM near you - find it!

And if you're one of my many dear friends who was producing and/or directing one of the 24 LTYMs around the country this year - yay! Can't wait to see YOUR city on video, too!

But until then... here's a taste - what I read (an edited version of this post from last year):

Planets

Tonight my son Ethan and I ran a little excursion after dinner. Just the two of us. When we walked out the door it was not quite seven o'clock. These days that means a sky full of light.

Added to the ridiculously unseasonable warmth, us stepping out on a March eve in mere t-shirts, and I was hard pressed to remember it wasn't a languorous summer evening, but yet a school night, and thus we had to execute our errand quickly and hurry home.

Besides, I had promised the upstairs neighbors with whom I had parked Ethan’s twin brother Jacob that we'd be back within the hour, and I sorely did not want to abuse my favor currency with them. Friends who are comfortable taking on Jacob are few and far between, precious as diamonds.

Jake himself was delirious to be upstairs with the neighbors and their white terrier, with whom he is nearly as obsessed as he is with our cat. Jacob calls these animals 'my best friends' which, though it breaks my heart, is true.

Ethan and I were on a mission.

We absolutely HAD to go to the bookstore tonight because he had finished the last book of a particular series in our possession the day before, and thus we were now in the dreaded state of NOTHING TO READ.

Ethan is in high, silly spirits as we walk the busy Broadway blocks to our local Barnes & Noble. He skips and darts around me walking down the street, as much crazed mosquito as boy.

"Look at all the people out in the evening!" Ethan proclaims with wonderment, and I dive again into pointless regret that we are not living anything like the life I had imagined, filled with evening family strolls and nighttime explorations of the city.

Jacob does not like to leave home all that much, and to be out with Jacob and Ethan together is most often a form of torture. I must have some wealth of resilience in my bones, some stored reserve of calm and good mothering at the ready.

There are days when I can and days when I can't and today was decidedly in the impossible column.

<^>^<^>

Mission accomplished, book in hand, Ethan and I pushed through the store's glass doors into a city become night, the sky's blue glow nearly extinguished, the streets bathed in yellow-orange incandescence.

Turning west to walk the two short blocks to Riverside and home, the brightest of stars appeared in the overhead sky.

Not stars, planets: Venus and Jupiter blazing in the deep cerulean sky that slices between the high-rises, thankfully not obliterated. These two gods are in a much celebrated love fest this month, a rare conjunction.

And yet, while they appear to be quite close, kissing distance tonight, they are in fact not truly crossing at all. It's just an artifact of our perspective, the way they look from here on our own mudball.

They are in fact deeply distant from each other, Venus, sunward, drawing us in toward the heart of our solar system, while Jupiter circles round us from the outside.

I do not like that my children are distant planets, each locked into their own distinct orbits, occasionally approaching but never truly crossing paths, both merely circling 'round me, their sun.

How I wish instead they were more like a double star system, like so many of the other twins we know: circling each other, at times closer, at times more distant but always in orbit, one about the other; connected, entwined, hurtling through space as one.

But I must, as ever, resist the siren pull of the "what ifs," of that dark matter that draws me to its crushing embrace.

I must instead stay here, in the now, in the track of my actual sons.

The one who lives on planet Autism.

And the one who does not.

All the other (good) stuff

Baking cookies with Ethan

You would think from what I've written about them lately (not at all) that I didn't still have kids, so consumed has my blog been with my mother's death.

But it's perhaps because I do still have kids (two, in fact) and I so strive to be present and cheerful with them in my daily life, that I come to this space (my own) to let all the heaviness leak out.

It is nearly two months since my mother has passed and time has not stopped, not even for a second.

Ethan is now in the final months of fifth grade.  Each time I bring him to or pick him up from school, I look at the tiny kindergarteners swirling past and marvel that he was once so small and that we looked upon the "big boys" back then and found it unimaginable that our sweet little five year old munchkins would ever become THAT.

He is worried about the future, about middle school - both getting into the one he wants (a unique New York City problem, I know) and about what it will be like when he is actually there next year, with new faces and routines and a whole higher order of academic pressure.

He is sad that his Saturday basketball league is about to come to an end. And that the Knicks really suck right now. And that his grandma is dead. (And probably about in that order.)

He grew a whole inch in the last two months.
 
We bake cookies together. A lot. I used to bake with my mother all the time. (Some of the recipes we use are hers.)

Jake & Belt at The Croods screening

Jake is a wonder.

I went into his recent parent teacher conference with trepidation, knowing he'd had a hard time adjusting earlier this year, and what I heard brought tears to my eyes. Happy tears.

They said that all the trouble at the beginning of the year seems to be behind them. They haven't needed the behavioral plan. He doesn't work just to earn iPad time at the end of his day. He is calm, engaged, participating, and if he starts to get out of line (throwing the word "stupid" into every sentence, perhaps, as he is wont to do) all they have to do is threaten to separate him from the group.

"I'm sorry. I'll stop." he says. AND HE DOES.

Furthermore, they all expressed their love for him so clearly. "Some days I just want to take him home with me, I haven't had enough Jacob time!" said his assistant teacher. That she already has a one year-old at home makes this doubly miraculous.

Jacob is having a burst of language and connection that is lovely to experience.

The other day he came into the room, uttering a very conversational "Mom, can I talk to you for a sec?" He stopped when he saw our cat lying upon me, purring. "Cocoa loves you!" he said.

SO much going on in those three simple words: being interested in and observing his environment, correctly interpreting what he saw, understanding the emotions involved, and commenting on it, in original language.

If you know anything about autism, you will know how beautiful this was, indeed.

He is also actively seeking to participate in situations, after observing others doing the same. (Again, awesome!)

Watching me, my friends and family sharing our memories at my mother's memorial service, he asked to go up to the podium himself, and then spoke a few very heartfelt, very appropriate words about his Grandma (more on that soon).

This past Monday I was invited to a mom-blogger family press screening of the new animated movie "The Croods" that Jake has been excited about since the ads and trailers for it stared popping up months ago.

We had a great time - it's a very enjoyable movie - and afterward there was a Q & A session with the  writer/directors Kirk De Micco & Chris Sanders, and Catherine Keener - the voice of the cave-mom. After answering The Moms' questions, they invited kids in the audience to come down and ask some of their own.

Jake and I were sitting near the back. He watched some kids ask questions about various aspects of the script or the production, he listened to the creators answer. And then he told me he wanted to go up and ask his own.

We made our way up to the front of the theater. Catherine Keener saw us standing by, and got up herself to hold the microphone for Jake as he asked: "How did you get the idea for Belt?"

(If you want to watch Jake yourself, it's the bottom video here at exactly 10 minutes in. It may look like I'm prompting him, but it IS the question he told me he wanted to ask as we were waiting our turn. He just suddenly forgot it when the mike was in his hand, and I had to whisper it in his ear.)

I was so proud of my (autistic) boy that day.

(And every day.)

Jacob, me & Catherine Keener at The Croods

So just in case you were worried that I had lost myself in grieving... I haven't.

I try to leave it here.

And in occasional tears on my pillow.

I haven't forgotten that I have two wonderful, alive, full of life boys.

And oh yes, a husband, too.

(Hi, honey.)

So expect me to be bouncing back and forth here between mourning my mother and telling tales from all the other myriad facets of my life.

I'll try to remember to throw in the good stuff as often as I can.

And ask you to forgive if the tears outweigh the laughs for just a little while longer.

February '13 Round-Up: What I Loved on OTHER People's Blogs

Birds by Neil Kramer

Welcome to the February, 2013 edition of my monthly "What I Loved on OTHER People's Blogs" feature. The place where I share what has caught my eye (and brain, and heart) on the internet over the past month.

Also, as usual, I am featuring photos from my friend and amazing intstagram photographer Neil Kramer - of the blog Citizen of the Month - who for some reason decided to leave sunny LA to visit cold, gray NYC this month.

I have been so busy mourning and dealing with the aftermath of losing my mother last month, I barely posted in February. But thankfully, so many other folks wrote wonderful things, and I am happy to now share these with you...

Wall, New York City streets by Neil Kramer

Early Spring by Deb of Deb on the Rocks

On Feeling Lonely by (The Empress) Alexandra of Good Day Regular People 

We Are More Than the Stories of Our Fears by Elan/Schmutzie of Schmutzie

Mailboxes, Queens by Neil Kramer

fierce and weak – on fighting like a girl by Heather of The Extraordinary Ordinary

Drinking From the Well of Confidence by Ciaran of Momfluential

Girl on Fire by Alysia of Try Defying Gravity

Red Ball on Fire Escape #2, Queens  by Neil Kramer

Bully: I Do Not Think It Means What You Think It Means by Jennifer of Anybody Want a Peanut?

Autistic People Should Be Free to Flap by Jo of A Sweet Dose of Truth

Winter Coat by Neil Kramer

I'm not much of a planner by Maxabella of Maxabella Loves 

Life is beautiful by Stacey of Is There Any Mommy Out There?

This Old House by Lisa of Smacksy

 Recycle, Queens by Neil Kramer

What you don’t know about me by Jessica of Four plus an angel

How We Do It: Part XXIII in a series by Elizabeth of a moon, worn as if it had been a shell

LAX by Neil Kramer

Be well, and let's hope for an early spring.

The view from here

In the dark of a too early morning, I crack open the door of the boys' bedroom to wake Jacob, still deeply under, in the top bunk.

I entreat him to rise with whispers, remind him to stay quiet himself, so as not to awaken his brother, asleep below, as he sits up uttering his usual first word of the day “Stupid.”

“Jacob…” I whisper-scold.

“Don’t say the bad word” he repeats in a singsong voice.

“Shhhhhhh.” I remind, again. And in a louder, more urgent whisper “Come down now, Baby, the bus will be here in a half hour and it won’t wait, you have to get ready for school.”

“Stupid” says Jacob, one more time, as he lumbers down the ladder, his ancient blue bear firmly clutched in one hand.

Then, at the bottom: “Can I have a hug, Mommy?”

And thus begins our day.

By the time Ethan is up - after three visits to his bedroom, progressing from a cheerful “good morning” through a gentle shoulder shake, the flashing on and off of lights, the radio blasting an obnoxious rock station and the (idle) threat of a cold water dousing – Jacob is long gone, sent off with a kiss onto his long bus ride to his wonderful Special-Ed school on the far, other (lower, East) side of town.

(I try not to think about it too much, because it makes me sad when I do, but, yes, my boys, my twins - due to luck, genetics, a whim of the gods of autism & neurodiversity, and probably something I ate or didn’t eat when I was seventeen - lead very separate lives.)

Ethan and I talk, always; words his currency, as they are mine.

We talk a lot or a little, depending in the day. Did the Knicks win last night? How about the Nets? Chatting away through breakfast eaten, lunch made, bags packed.

Some days I take Ethan to school, yet others I send him walking with the neighbors, two boisterous boys whose testosterone-filled company he favors lately.

Already he has begin to resist my goodbye kisses when others are present. "Mooooooom" he protests as I hand him over in the lobby, though I know tonight he will still curl up into my lap as we watch the game together, after homework has been done (please God, let the homework get done without torture tonight).

<*> <*> <*>

And then I am alone, with too much to do, but no heart for any of it.

I am supposed to be writing my mother's eulogy right now. With the snow delaying her memorial service, I have had a long time to accomplish this seeming simple task, even longer to contemplate it, as I knew, bone deep, that the end was coming soon.

And yet I just... cannot. Words are failing me.

I wrote a beautiful eulogy for my father. Poured all my love and crystal knowledge of who he was into it.

But my mother... my mother.. my mother...

All I want to do is keen and cry.

In spite of so many words spilling out of me immediately after her death, I am now experiencing my grief in a visceral, animal way.

I am angry, bereft, pained; and in no space to make pretty words of it. For even at the very end, drifting away from her memories, from the shaped, sharpened form of herself, my mother was still filled with light and love.

And when we held hands the bond between us thrummed, strong as the day that I was born and we became mother and daughter.

My mother was unwavering in her love, and the space it took up in me is now dark, hollow, memory's embers being a paltry substitute for the heat of a living presence.

And there has been, yet, barely time to mourn, so filled are my days with the minutia of things that must be done; mountains of laundry and paperwork; all the threads that I dropped when constantly dashing off to my mother's bedside must now be gathered and stitched back in, the fabric of my life holey, like tattered lace.

<*> <*> <*>

The boys mourn my mother, each in their own way.

"I see Grandma, in my brain" says Jake. And I am never sure if that means to him what it does to me. He still asks to go see her sometimes, the concept of death as a permanent state being perhaps too abstract for him to fully grasp.

Ethan and I bake blueberry muffins, Mom's perennial favorite. No matter how low her spirits or appetite, I could always entice her to eat a blueberry muffin and a cup of hot cocoa.

Come to think of it, we're drinking a lot of cocoa, too.

Mom...

I raise my mug to you.

Mom, enjoying cocoa & a muffin with me, December, 2011

Autism Shines On

Only a few days old, the Autism Shines Facebook page (with a website soon to come) has now touched thousands of lives. I am happy and proud to have been a part of this from the beginning.

Because my boy? He so shines. With love and joy and happiness. With the light of a thousand suns.

Is he decidedly different? You betcha. So what?

I adore every atom of his being. He owns my heart.

Come see my son amidst his people.

Come see all these beautiful autistic folks with their spirits shining through.

Share your own photos.

And let me leave you with one more image, something to remind us how silly it is to make assumptions about people merely because of a diagnosis on the autism spectrum...

This is Jacob. This is autism.

I know I have fallen silent here again. This time it's because I have been overwhelmed by the fallout from the events of the past week. Newtown.

There has been a misguided media feeding frenzy focused on a possible autism diagnosis of the shooter, and erroneous speculation that autism was behind Adam Lanza's heinous acts.

There is much destructive misinformation spreading around the world.

Ignorant, spiteful people have created hate sites about how autism = violence, and proclaiming that autistic people are monsters who should all be rounded up and jailed or exterminated.

I can't...

I just can't...

I can't even breathe when I think about this.

I have not been able to write about it yet, finding myself just too devastated, frightened and overwhelmed to form a cohesive sentence. (Hence the radio silence.)

But many many friends of mine have been writing, voices of love and light to meet and answer the tide of fear hate.

For starters, read these, here:

A letter to Elisabeth J.A. by Jillsmo

My Son Has Autism. Please Don’t Be Afraid. by Jo Ashline

When Children Die, It’s Time to Grieve and to Reflect, Not to Scapegoat by Rachel Cohen-Rottenberg

And also a movement sprang up, a photo meme: "This is Autism" - to put a face to autism as we know it, with words describing some of the wonderful, quirky, delightful people who are on the autism spectrum. Parents are sharing their children, adult advocates are introducing themselves.

And that I could do; thus this picture, with these words.

And we're all sharing it here, on the Autism Shines facebook page.

Come, see the beautiful shining faces of so many of us and our children. Share your own images. Meet some people with autism who are not violent scary monsters, but our wonderful children and our wonderful selves.

OK, I realize if you're a reader of my blog, I'm probably preaching to the converted, but please share this page widely and maybe it will reach someone who needs to hear it.

Peace to you all. More words here soon.

Fired for Sure

"I. Need. To. Sleep!" growl-shouts Jacob when I go to wake him up this morning at O-dark-hundred. It's hard to get back on track after three day weekends, after school vacations - scheduled or unintentional like the week he just had off for Hurricane Sandy. But he's never been like this.

The whole morning, getting ready for school is filled with Jacob growling and sobbing and angry-crying and clenching his jaw, grit-grinding his teeth, overwhelmed by waves of frustration.

Besides this, his begging for more sleep, he is also demanding "My. Skittles!" a holdover from our struggles yesterday to curb the upwards spiraling trend of candy consumption in our house, engendered by the one-two punch of Halloween and hurricane.

"I'll get fired for sure!" he wails, his latest script - culled from Sponge-Bob - in response to any admonition I make, no matter how gentle.

Me: "Jake, please keep it down, everyone else is still sleeping. I know you're unhappy but you can't scream at 6 AM."

Jake: "Oh, no, I'll get fired for sure!" (cue sobbing)

And I am also pretty sure he doesn't know what "fired" means, afraid he has conflated it with the idea of things catching on literal fire - a frequent of occurrence on Sponge-Bob - and is somehow terrified of becoming actually torched, set aflame for his wrongdoings.

I repeat over and over that "being fired" means losing your job, and he doesn't have a job; that his only job is being my kid and he can never get fired from that. But I can see in his eyes it's just words washing over him, none of it sinking in. A conflagration of misunderstanding sweeping over all.

It breaks my heart when he is this unhappy. Shattered into a million glittery pieces. It breaks my heart that I get angry and frustrated with him, too, at these moments, watching the clock tick away knowing I have only so many minutes to get him dressed and fed, medicated and jacketed and downstairs, ready for the bus. Legally, they are allowed to wait for 3 minutes, and then they are required to speed off.

So I alternately scold and cajole, hug and hustle and DO get the kid on. the. damn. bus. 

And then after waving goodbye to my boy, still alternately crying and grimace-grinding, I come back inside to pick up the heart shards. And they cut deep, so deeply; yet another set of guilt lines, criss-crossing my invisibly battle-scarred arms.

Halloween in the blink of an eye

This year: Batman & a ninja

It was Halloween yesterday, a holiday that is usually a high point of our year. Jake starts talking about it over the summer. By September it comes up nearly every day. Jake loves pumpkins and Jack O' Lanterns and all things Halloween in that passionate and obsessive way that autistic kids can love things.

For Ethan it's about the costume and the candy (the CANDY!!!!!) and the fun with friends. But for Jake it's so much more. It's something really recognizable that helps him figure out the passage of time. Halloween time comes around every year, and every year it is more or less the same.

He loves seeing his superhero friends come to life and walk all around town. He loves ghosts and witches and black cats. "Oooooh scary!" he'll say, not the least bit scared.

Jacob IS Batman

Jake loves the decorated buildings, the Halloween pop-ups that sprout in empty storefronts; is disappointed when they disappear in a sudden poof come November 1st.

But this year? I must admit that Halloween 2012 was a bit of a wash. Between the tragedy last week and then the storm, with the fear and preparations; and then the destruction all around us, I admit I was in a bit of a daze, hardly entering the holiday spirit at all.

Jake & me, in my annual "throw on a hat & call myself a witch" costume

For years now I have been obsessively making Ethan's costumes by hand (I would have done so for Jake too, but he dearly loves the store-bought ones) but this year I just knew I didn't have it in me.

Between the pressures of caring for my mother in Long Island, being in the thick of the intense middle school application process for Ethan, it having taken a month to get Jake's schoolbus straightened out and being in the midst of our legal process to get his school paid for, plus about a dozen other things I'm not even going to go into, I am worn quite thin right now, stretched to near breaking point.

Something had to give, and that was the handmade costume. So be it.

And then there was Sandy.

We live in uptown Manhattan in New York City, which means on high, high ground, well above the surge and North of the dark zone, the blackout line. We live in the land of heat and light and screens and open stores and restaurants. But all around us are those in cold and darkness.

 

So our building held its annual Halloween party, for who could deny our children their fun, their pizza and candy, their rides in the spookily decorated elevators run by the Hulk and Blackbeard.

 

But it felt strange to be celebrating amidst so much destruction and tragedy.

 

And now it's over. Jake was so sad to come to the lobby today and find the decorations all taken down. "Where did Halloween go?" he asked. Where, indeed?

Hope your Halloweens were full of less mitigated fun and joy. (And now I'm going to steel another mini Heath Bar from Ethan's stash and call it a night)

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:

Hopeful, Kindred Parents

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

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


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

Kindred Spirits

Enjoy!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And then I noticed the date.

It's October 6th.

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

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

And eight years ago today?

Jake got his first autism diagnosis.

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

Sad, bad, mad anniversaries.

I hate 'em.

Nothing to do but forge ahead, get through it.

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

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?"

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

Long Shadow, Queens by Neil Kramer

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

Also, as usual, I am featuring many photos from my friend and amazing intstagram photographer  Neil Kramer - of the blog Citizen of the Month - who was still in New York this month, beautifully capturing the spirit of our wondrous city.

It's a lot of posts this month. I've been a fair bit insomniac, which leads to lots of reading. Also there's a lot of autism related posts. (Maybe to make up for my not writing that much about autism myself lately?)

Whatevs. Without further ado...  Enjoy!

7 Train Now by Neil Kramer

 
Parenting (Autistic) Kids is Hard from Jean (Stimey) of Stimeyland 

How We Do It, Part XVI in a series by Elizabeth of a moon, worn as if it had been a shell

Sex by "Murphy Brown" at Autism Underground

Face in the Limo by Neil Kramer

Meditation For An Autism Mom by Whac-A-Mole Mom of My Whac-A-Mole Life at The Oxygen Mask Project

Falling down the rabbit hole of 'why?' by Louise of BLOOM - Parenting Kids With Disabilities 

the noise of life by Jessica of Four plus an angel at mamalode

This month Neil added a little twist to some of his photos - captions that transform them into perfect mini-dramas. Here are two of my favorites:

"I'm not in love with you anymore," she told him the next morning. "I'm also sleeping with your brother." (Photo: Neil Kramer)

"Look at this schmuck, walking around with his phone out like he's married to it. You know he's not getting laid." (Photo: Neil Kramer)

Just A Little Something by Anna of An Inch of Gray

The Waiting is the Hardest Part by Kristin of Running to be Still

Every Time I Talk About Depression – Being Brave by Chris of Chris Brogan

The Summer Officially Ends, NYC by Neil Kramer

Seeing Someone as Limited Means Seeing Them as Less by Kim of Countering

Actually, Motherhood Is the Toughest Job I’ve Ever Loved by Joslyn of stark. raving. mad. mommy. at Babble's Strollerderby

Here Comes The Sun by Alysia of Try Defying Gravity

Working at Starbucks, NYC by Neil Kramer

hurt is not betrayal by Jess of a diary of a mom

It's about the sanity  by Patty of Pancakes Gone Awry

Tell It Like It Is – On Being Asked What It Is Like to Have an Autistic Child
by Leigh of Flappiness Is...

We're Dead and Sleeping With Ghosts by AV Flox of Sex and the 405 at BlogHer

Tour bus by Neil Kramer

And as September contains both the anniversary of 9/11, and Rosh Hashanah / Yom Kippur (The Jewish New Year / High Holy Days) I feel this round-up wouldn't be complete without posts on these matters.

So here is a (beautifully written) 9/11 memory for you:

The Formative Days by Sarah of Sarah Piazza

NYPD, NYFD, NYC by Neil Kramer

And a Rosh Hashanah / Yom Kippur post (with vlog component - a Round-up first!):

Shosh Hashanah: As The New Year Begins by Shoshana of Shoshuga

Shoes by Neil Kramer

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

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

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

Photos of NYC by Neil Kramer