5th Night of Hanukkah

Hi there, friends. It's December 24th, and while some of you will be thinking "Christmas, Eve, yo!" over here it's the 5th night of Hanukkah, which I am sucking at this year.

We are not having a small group of friends over for latkes and menorah lighting tonight; not hosting the sweet little mostly-kids Hanukkah party as we have done for a number of years running.

Ethan is disappointed, and so am I. But I just... don't have it in me this year. I don't have the energy for the hustle and bustle it takes to pull that together, not even a haimish little party, like ours are.

If our apartment were bigger... if our apartment were tidier on a regular basis... if I had a sitter and more help... if Danny weren't so busy and otherwise occupied... if Jake didn't have autism... then, maybe.

I guess though, this is one of those times I'm actually grateful for Jake's autism because he doesn't care, doesn't really have any expectations of a party.  He's just glad he doesn't have to go to school today and can spend the day with his beloved cat and his video games.

So in order to do something holiday-ish at least here on my blog, I give you the following awesomely kick-ass Hanukkah song. M'kay?

My little Happy Hanukkah to y'all.

And just to prove you don't have to be Jewish to be rocking the Hanukkah thing? I stole borrowed it from Stark.Raving.Mad.Mommy who isn't Jewish at all!  (Well, she was born in Brooklyn which pretty much makes her an honorary Jew.)


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I'm Saying Things Over There

Today? I'm not here. This is an illusion of a post, a mere wisp, designed to send you elsewhere...


Today I'm guesting over at Shell's place, Things I Can’t Say, with a post about bloggy friendship and how important the blogging community is to me.

Which is so fitting as Shell is a wonderful community-building sort of blogger.

So come read me over there, with my post:  Dear Friends I've Never Met

And if you're here for the first time, coming to visit from over there...

Welcome! Nice to meet you. Please make yourself at home, poke around, stay awhile.

Don't know where to start? Want a little Squashed Mom road map? Click the links below for a nice assortment of my posts; a Bologna smorgasbord, if you will...

I'm an older mom, with nine year-old twin boys and an 89-year old mother in my care. I recently lost my 92 year old father and 93 year-old mother-in-law. I'm the squashed meat in the middle of the sandwich.

I write about birth and death, about being a mom and being a daughter.

I write about Autism in general, and my autistic son Jacob in particular.

I write about how adding in my and Ethan's ADD makes us a very neurodiverse family.

Sometimes I try to make you laugh.

And sometimes I try to make you cry. 

Sometimes I tell stories from my childhood, and my family history.

And I once let Ethan take over my blog and tell his own story.

I also write every month for Hopeful Parents.

And sometimes I link up on Mondays with Be. Enough. Me.

Also? Ethan and Jacob do not get along well, so I started a guest post series to talk about sibling relationships in families with special needs kids, called Special Needs Sibling Saturdays.

I hope you like what you've seen, and that you'll come back to visit soon.

Finally, thanks so much to Shell for inviting me to her place today. It's an honor.

And for those of you celebrating Hanukkah, like we are: Happy Fourth Night (we're halfway there)!



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Leaps and Bounds

Wide-eyed Jake at our building's Holiday party, 2011

I am happy to report some good news, for a change: Jake's original language has been making some marvelous jumps lately. The things he says out of the blue being startlingly observant and detailed, or his conversation loops are going deeper and deeper, continuing to make sense in wonderful and wondrous ways.

Jake to our neighbor sitting in the lobby with her leashed dog the other day as I brought him inside from his school bus:

Jake: You have a dog!

Neighbor: Yes I do!

Jake: Hi, doggie! What's your name?... (then, looking up at neighbor) What's his name?

Neighbor: His name is Jack.

Jake: Hi, Jack, I'm Jake!

Neighbor: He really likes kids.

Jake: (waving) Nice to meet you Jack! (then, to me, done here) Mommy can we go in and pet Cocoa?

A very nice, little social exchange!

Also, yesterday morning, my husband stumbled into the kitchen bleary-eyed as Jake was getting ready for school.

Jake: Daddy what's wrong with your eyes?

Dan: Nothing Jake, I just woke up, I'm still sleepy.

Jake: Dad, open up your sleepy eyes! Bigger, like this! (gives demo of his ridiculously wide-eyed stare)

And? Driving home from the big family Hanukkah party this past Sunday, we took a different route than usual into the city, as we were going to the East Side first, to drop off my mother.

As we pulled off the FDR into the city streets, Jake looked around and asked: "Are we home?"

I explained we WERE in the city but a different neighborhood, on the Upper East Side dropping off Grandma and would then be driving crosstown to the Upper West Side (where we live) through Central Park.

We were moments out of the park when Jake spotted a familiar building, and complained "That's not home, that's (name of our synagogue)!"

Boy does this all make me happy! Combined with his insights the other day (born, unfortunately, out of pain), combined with his amazing artistic spirit erupting, my son is really blossoming forth.

So as we head into this longest night tonight, having passed through the shortest day of the year today, I tell myself:

Have patience, have faith, it will be getting brighter; brighter and brighter, soon. Know it will happen, incrementally, day by day.

Believe; feel the coming sunshine, even whilst standing in the dark.

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Monday Listicles: Inside my Brain

 
Yes, I know today is Tuesday. But since I fell asleep on the sofa (upright and lightly drooling, yes) before I could finish my Sunday evening post and had to put it up on Monday, this one has had to move on down the line. Welcome to my life.

I guess that could be another YouMightBeAnAutismParentIf tweet: "#YouMightBeAnAutismParentIf you put up all your blog posts a day late so it's SOC Sundays on Monday and Monday Listicles on Tuesday" (And Wordless Wednesdays on Thursday and Alphabe-Thursdays on Friday and Special Needs Sibling Saturdays on Sunday... and yes I've been guilty of ALL of these late postings!)

Anyway, I'm posting this just after midnight, on American East Coast time, which means it's certainly still Monday somewhere... California, for example. So, on a technicality, I'm not REALLY late.

OK, enough meta-jabber. I rest my case. On to the actual post...

This week’s Listicle assignment (from Bridget of Twinisms via Stasha at The Good Life) is based on the show "Inside The Actor’s Studio With James Lipton."

You’ve seen this program, yes? Every celebrity interview ends with the same 10 questions, which I will attempt to answer, now:

1. What is your favorite word?
You're kidding right? ONE favorite word? Ain't gonna happen from wordy, word-loving me. Like I tell my kids: I don't have just one favorite. (And yeah, I'm gonna start this list being all contrary, oppositional and rule-bashing again. Wanna make something of it?) But on my short list, you'd find: smorgasbord, chartreuse, ungepatchket, and fractious.

2. What is your least favorite word?
Retard or Retarded. And if you don't know why I hate this, the "R-word," you're probably at the wrong blog, here by accident. If you want a refresher, read my friend Ellen's posts all about it. Start with this one: If you ask people not to use the word "retard" then plug in the R-word into her search box and read everything that comes up.  

3. What turns you on?
Intelligence, humor, kindness.

4. What turns you off? 
Willful ignorance and cold-heartedness. Also black socks and white sneakers with Bermuda shorts.

5. What sound do you love?
An ocean beach. Also? Truthfully? My own voice. (Hangs head.)

6. What sound do you hate?
Metal scraping on metal. If you use a metal fork to eat out of a metal bowl I will be forced to make you stop by any and all means necessary. It's like nails on a chalkboard to me. Also, not coincidentally, nails on a chalkboard.

7. What is your favorite curse word?
Really, it's a toss up between motherfucker and bullshit. I guess I like compound words. Ethan is studying them in school right now. But never fear, I'm not going to suggest THESE for his "Write 10 juicy sentences using compound words" assignment.

8. What profession other than yours would you like to attempt? 
Brain surgeon. *Kidding!* But seriously, neuroscience interests me greatly, the biology of how we think and feel. I could have gone into medicine, have a great affinity for it. In other words, my mother was right - I shoulda been a doctor!

9. What profession would you not like to do?
The thought of accountancy fills me with dread. And I like numbers. I just hate paperwork.

10. If heaven exists, what would you like to hear God say when you arrive at the pearly gates?
A variation of what my husband quipped when first we met: "Oh, sorry, I got you confused with (renowned French filmmaker) Agnès Varda... Your number's not up yet, back you go!"


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Early Hanukkah

Yesterday my husband's family gathered for their annual giant Hanukkah party extravaganza. On the car ride back from the latke and present fest, Ethan asked his Dad when it started and he calculated that it had been going on since about 1943 or so. Coming from a tiny family like I do, it's nice to be a part of a giant, sprawling, warm, inclusive clan.

Leaving my first ever of these, when Dan and I had been dating for about six months and I was still his "new girlfriend," I told him, "I've never been hugged and kissed by so many people I just met in my life."

In my husband's family, if you love one of them, they love you. It's nice. Exhausting, but nice. (Not a year passes without at least one - and often more - Bar Mitzvah, wedding, landmark birthday or anniversary, and, unfortunately funeral or unveiling. Lots of opportunity for togetherness.)

This year the Sunday that is also Hanukkah just happens to fall on Christmas, and the one after that on New Year's Day, so the party was held a week early.

We brought my mother, of course, who, because of her poor short term memory recognizes nearly no one, but is happy to be out in the swirl of family, with her own grandsons and lots of random (to her) toddlers and babies to boot.

Jacob actually yelled "Happy Hanukkah!" to everyone this year instead of "Merry Christmas!" which he used to be wont to do, as there is so much more of that in the world around him to catch his echolalic attention.

Ethan again asked to be the one to light our family menorah, and this year I finally said yes.

Saying prayers

Jake and my Mom watching

Ethan, lighting the candles

"Real" Hanukkah begins this Tuesday at sundown. But Sunday we got a little sneak preview; an all too rare family outing; a lot of hugs and kisses. A happy togetherness.

Wishing you all Happy Holidays and good times with your families (or without them if they're on the torturesome side)!


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Morning Rites

The boys are sleepy this morning, waving me off like an annoying gnat when I come to rouse them, Jacob quietly at six and Ethan more noisily at seven. In this, too, they are separate and unequal, and it saddens me, one more drop in the bucket of disconnection that sits on my chest, heavy.

Jacob is still growling at everything that displeases him and there is much that displeases him about mornings. I want him to get undressed and he wants to pet the cat. I want him to get dressed and he wants to pet the cat. I want him to eat breakfast and he wants to pet the cat.

Jake is mad about his underwear again, having outgrown the brand he has worn since he was four and toilet trained. "I want puppies, I want basketballs, I want orange!" he yells, hitting his body in protest as I pull the boring solid grey underpants up over his sizable hips. And so I make a mental note of something to add to today's already overflowing "to do" list: find boys size XXL or mens size small briefs in bright colors with fun pictures on them.

I wish we had the luxury of time in the mornings, to take a long snuggle on the sofa and pet the cat to Jake's hearts content. But he is up too early already. I can't set the clock back any further and his bus is now coming ten minutes sooner for no reason other than DOE regulations suddenly being enforced.

So the mornings are a non-stop nudge fest from me, nearly every interaction an iteration of "Hurry, Jake" or "NOW, Jake!" All the fun and sweetness poured out of it.

I resist the urge to growl at the bus myself, as I see it pulling round the corner, lights already flashing. A quick kiss on his cheek, with the matron impatiently waiting to whisk him away, must sustain me for the rest of the day.

Entering the apartment again, divesting myself of the down coat thrown on over pajamas, I survey the kitchen carnage, prepare for round two. Another breakfast, another lunch, another tired boy to shake loose from his dreams.

"Hug me, Mama!" Ethan demands as I lean over him pulling the warm blanket away, hoping the shock of cold will do what my hand lightly tousling his hair and my voice sing songing "Wakey, wakey, school time, babe..." could not.

He's in a good mood, dancing around the apartment peeling off his PJs, putting on his clothes. Which means, of course, that they are strewn throughout.

Checking his homework once more as I place it in the folder, put together his backpack (intone for the thousandth time that this really is HIS job) I notice a question skipped, so a pencil is hastily procured, math dipped into briefly and then his nose is back in his book.

Ethan is at the very, very, very end of the last book of the Harry Potter series and he just can't get done soon enough. Mysteries are being revealed; all those secrets he'd attempted to wheedle out of me for the past two months, and I'd blithely answered "Read the books you'll find out at the end" are finally within his grasp.

Watching him read and eat, curled up in the armchair as I bustle about packing up his lunch, picking up Jake's pajamas, I am struck again by how much he looks like me at that same age.

I take a mind's snapshot of him ("Zen photos" we used to call those in my family) knowing that soon he will lengthen, the angles of his face sharpen and a man will emerge from this boy-child.

But not quite yet.

He dons sneakers and jacket right on time, with nary a nag. Book stowed in backpack for reading at school, basketball retrieved and tucked under his arm, we set off.

Walking together down our quiet morning street, he gleefully dribbles the ball a bit, showing off his latest moves; then stops, slips his hand into mine.

"You're the best mother, ever." I try not to beam too much. "Well, for me that is. You wouldn't be a good mother for him." he adds, pointing to a dog being walked in our direction.

"And you're the son for me" I tell him, "You're the son for me."

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Step by Step

Saturdays, these days, my husband and I divide and conquer to bring the boys to their simultaneous basketball practices, and it was my turn for Jake.

Jacob truly loves basketball and the "Challenger" Special Needs division we finally found for him to play in last year, but was having a hard time sharing the ball after all those months of getting his own when we went to shoot baskets in the schoolyards.

Jake shoots wonderfully well, but the rules of the game, remembering to dribble, the need to pass, to pay attention to what other people on the court are doing... all these things continue to elude him. Autism, you know.

Jake kept chasing after the kids with the balls and yelling "STOP! That's mine!" Cringe.

I try not to interfere, to intervene too much when we're at basketball, try to give him his independence, to not be "that mom" kid-coaching from the sidelines. Yet the actual coaches seemed too busy to deal with this really-not-OK behavior and I couldn't let him terrorize the other kids, who were mostly younger and / or smaller than my giant son.

I kept popping out of my seat, running up to Jake to remind him that game is played with ONE ball and everybody shares it. Or yelling something to that effect when he was within earshot of my seat on the parent bench.

A couple of times he came over to me looking sad, and I kept sending him back into the game after a quick hug or a deep drink of water, reminding him to stay with the other kids wearing red vests and to keep his eyes on the ball.

Jake held it together during practice, drifting in and out of connection with the drills and game. But afterward as we were getting our coats on I saw the eyes blinking, the lip trembling, the sadness welling up; and on it came.

So I sat with my son, sobbing and wailing. I held my son, lost and losing it, his words coming out in a jumbled salad I could not make sense of.

And then in the middle of it all, he looked me in the eyes and asked the most amazing thing:

"What's happening to my brain, Mom?"

WHAT?

This level of self-awareness, recognizing that something in his brain is going haywire?

Monumental.

Unprecedented.

An incredible thing that I feared I would never see.

And then Jake was telling me that he was going to go home and cry at Cocoa the cat, and that then she would be mad at him, and he started to caterwaul anew.

I was trying to piece it together, realizing he might be thinking I was mad at him for having had a hard time in the game, and maybe even mad at him for crying, now.

I kept telling him to look in my eyes and see that I wasn't mad, that no one was mad at him, that I was proud of him for how hard he had tried playing basketball today, that it's fine to cry if he's sad, but that maybe his brain was stuck, and if he wanted to stop crying I would help him.

"Remember to breathe Jacob; slow breaths; in, out; one, two."

He gained his composure, only to lose it again. Again and again. We were going to be late for the movies.

And then one of the coaches came over and praised his shooting abilities, promised he would get more ball time next week.

And maybe my murmured words of love, of soothing, had washed over him enough that they were sinking in.

Or maybe his brain finally stopped misbehaving, let him move on

But suddenly it was OK again.

My boy smiled. Said: "I want to eat popcorn at the movies, Mom."

And so off we went.

And loved the movie as Jake loves all movies, although this movie, Hugo, was particularly lovable. (Paris in the 30's, a history of cinema, what's not to love?)

And when we stopped for a quick grocery shopping before coming home, Jake was remarkably present, helpful. He reminded me that we needed bananas, picked out a nice ripe-but-not-over-ripe bunch himself without any prompting at all.

Hungry for dinner, we hopped a cab home, and as we pulled up in front of our building he said: "Thank you driver, for taking us home!" to the cabbie, more polite by far than his twin ever is.

And so deep into the evening I pondered my son and his question.

A sign that more self-awareness will one day come.

That one day I may actually know my son Jacob's innermost thoughts, a cypher no longer.

Patience is now needed. For this can not be pulled from him, but rather, I must wait for it to blossom.

Wait for his next step, in this dance that he alone knows.

Let him be.

Enough as he is, and embracing what he will become.

Embracing what will come.

I am linking this post up to Be Enough Me Mondays at Just. Be. Enough.

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