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!

October Thoughts

Mom, on the last day of September

It's the first of October... and what will this new month bring? Certainly more visits to my mother, twice or thrice weekly, sometimes with a boy or two in tow, sometimes not. (This past Sunday, with.)

Mom & Jake on Sunday

The air took a turn for the crisp today, and I was so ready for that, as my thoughts are gliding towards the autumnal too: a little sad, the bitter mixed in with the sweet. These are the days of waning and I feel that in nearly all things right now.

None more so than when visiting Mom.

She is so diminished, I don't even know what to do with my feelings when I see her. I just try to care for her as best I can. I hold her hand and look into her eyes. We talk a little but not so much, the deafness being a barrier as well as the cognitive dimming.

I take her out into the courtyard every time I come so she can get fresh air and see the trees and flowers, birds and squirrels - what passes for nature in a paved suburban enclave. I massage her shoulders - feeling the muscle melting away, more bone and less flesh each time - and try to make sure she is being properly taken cared of.

But "Mom"? Pretty much not there any more. Just a sweet old lady with a few of her memories (and fewer by the day).

Ethan is a soccer player now

And yet there is also this: Ethan woke up earlier than usual this morning, at the same time as Jake. Unable to fall back asleep, he joined us in the living room, and instead of his usual cranky not-ready-to-be-awake self, was incredibly helpful with getting Jake ready for school.

Ethan remarked upon the still dark at that wee hour, pondered the breaking dawn. He also kept track of the time and kept himself rather on schedule to get ready for school, too. And that was just the beginning...

I had a trying day today. Literally. An Impartial Hearing is in progress with the city's DOE over Jake's schooling, and today was an in-session day. I obviously can't talk about any of the details of it, as it is... in progress, other than to say: it's about as much fun as you imagine it to be.

The hearings are in downtown Brooklyn, and we are keeping our babysitting down to a minimum these days, which meant that Dan was in charge of the boys this afternoon until I could wend my way back to the Upper West Side of Manhattan.

I came home to find quite a scene: Ethan was in the middle of patiently helping Jacob with his homework (had gotten half his own homework done already, too).

You could have knocked me down with a feather. If you are at all aware of the normally fractious relationship between my boys (just this weekend, for example) you will be stunned at the miracle this event represents.

And then? And then? And then...

Ethan made dinner for himself and Jacob. Nothing elaborate, rather basic - organic hot dogs grilled in the toaster oven, cut up fruit, baby carrots, bread / rice crackers. But still, he took the initiative,  volunteered, followed through. Incredibly proud of himself afterwards (and rightly so).

So maybe another thing this month that's autumnal and waning is a good thing: Ethan's nine year-old obnoxiousity giving way to some incoming ten year-old maturity. A mightily welcome October surprise indeed.

And I'll leave you with a little more bit of October:

A live performance from The October Project - an old friend of mine's band from the 90s. They're lovely if you've never heard them. Haunting alternative rock. Had a few albums out. Enjoy....

Surfacing

Uncle Walter stopped by to see Mom, too, today

I have been under the weather for so long I had almost forgotten how it feels to be functionally human. Today, finally, I caught a glimpse. Although I am now fully spent, having made up for lost time by filling my day to the gills:

Taking Ethan and the neighbor's kids to school (because their little sister puked just as they were getting ready to head out).

A quick coffee with school-mom-friends (need caffeine!)

Picking up the car from the repair shop (poor old thing).

Driving out to visit Mom, and all that that entailed (heart wrenched in a thousand different ways). Yet another conference with nurse manager on how to get and keep her on track, moving forward.

Driving back to pick Ethan up at school, and oh holy hell the check-engine light comes back on again (our car's resident poltergeist not fully exorcised), so back to the shop and then flagging down a cab to get to Ethan on time.

Dragging Ethan off to an appointment way East in midtown (1 bus, 1 subway, and a 4 block walk away). And if you know the U.N. is in session right now, you know this means closed streets and roadblocks and checkpoints and police everywhere.

Meanwhile, and threaded throughout: Emails and phone calls about Jacob's bussing situation. Which is bad. He's been getting to school AN HOUR late every day. Because the bus has twice as many kids on it as it should, with multiple schools to drop off at. Because the City of New York is trying to save money at the expense of Special Ed kids, the most disenfranchised citizens to start with. Don't. Get. Me. Started. (I will burn a hole in your computer screen with the white-hot lava of my wrath.)

Then back uptown and West to our 'hood for dinner at Shake Shack because it's near the...

Big meeting at Ethan's school about the middle school application process.

(If you don't live in New York City and send your kid to public school you have no idea of the hell that this means. Middle school is the bottleneck. There are many good elementary schools. There are a lot of good - and even great - high schools. There are very few decent middle schools, and NOT ENOUGH seats in them for all the kids who apply, thus making it a tough and very competitive process to get your kid into a one. Shoot. Me. Now.)

Finally HOME, a full twelve hours after having left.

(And then homework to go over with Ethan, but oh dear God he rushed through it, wanting to play his DS, so it all has to be redone, give me strength.)

Diving back under, not expecting much humanity tomorrow. I'll keep you posted.

The Harlem Globetrotters are coming to Brooklyn!

Ethan hanging out with the Harlem Globetrotters - how cool is THAT?

People? You know me. I don't do a lot of promoting on my blog. I am not much about the products or the events. I am a writer. Who has a blog.

But when the lovely marketing folks from the Harlem Globetrotters contacted me about being one of their social media moms and promoting their upcoming New York City game on October 7th with a ticket discount code? I jumped at the chance. I may have even done a little jig.

Because my boys? Basketball? The great LOVE of their lives. About the one thing they both agree on. And the Globetrotters? An amazing family-oriented organization that does a whole lot more than just play basketball. They go into communities and make a difference. They inspire.

Also? Super nice folks. I know because I got to meet some of them. And Ethan? He got to PLAY BALL WITH THEM!

Yes, last week there was a small media event in the city for some of us mom and dad bloggers and our kids. Five members of the team took time off from their strenuous pre-season training to come say hello, sign some autographs, and play a little one-on-one with the under-five-foot set.

Ethan got to go toe-to-toe with Buckets, TNT, Slick, Big Easy and Hammer on the lovely basketball courts at The Sports Club/LA – New York on the Upper East Side.
 
He got his jersey signed by the gang, too (now never to be washed!) and we watched a demonstration of their famed "magic circle" where the players show off their neatest tricks.

 

Ethan had a BLAST, as you can plainly see. And I have to tell you these players were as nice as they were talented and funny.

Talking with Big Easy, I mentioned that Ethan had an equally basketball-loving autistic twin brother who couldn't be there that day (due to school transportation issues) and he expressed genuine regret that he didn't get the chance to play ball with him, was happy to hear that Jake would be coming to the game in October and told me he wanted to be sure to meet him then. Just... wow!

(Seems like the Globetrotters regularly work with and have special sensitivity to Special Needs kids on top of everything else. Could they be more perfect?)

So, from everything I have read about them, and then meeting them in person and seeing how roll (and spin and bounce) I can say I am over-the-top excited about going to their game on October 7th. And if you live in (or are visiting) the New York City area and have kids, I strongly encourage you to come join us at the game. It's going to be a great show, a blast, a whole lot of fun.

And as this show also happens to be the GRAND opening of the Barclays Center in Brooklyn (new home of the Brooklyn Nets), you get bragging rights to being one of the first people to see the joint from the inside. Yet more cool.

Now the ticket specifics: The Harlem Globetrotters are coming to play at the Barclays Center in Brooklyn on Sunday October 7th and I have a discount code for tickets for you all:

Click on the graphic above, or this link: GLOBETROTTERS at BARCLAYS CENTER and then the "Buy Tickets NOW!" link on that page. At the ticketmaster site that brings you to, enter my code: SQUASHED in the "Promotions and Special Offers" ticketing option and you will get $7 off each ticket you purchase. Voila!

Note that this is Columbus Day Weekend - so even though it's Sunday, it's NOT a SCHOOL NIGHT!

I also encourage you to find out more about and connect with the Globetrotters - they're VERY accessible. You can find them on Twitter, here: https://twitter.com/Globies and on Facebook, here: http://www.facebook.com/HarlemGlobetrotters.

Hope to see you at the game! We'll be there. With bells on.
 

**Disclosure: I am being compensated for my promotion of the Globetrotters in two ways. As an associate I will be receiving a small percentage of the money for tickets sold with my discount code. I will also receive tickets to the game for my family. All opinions of the Globetrotters and my experiences with them are unbiased and wholly my own.**

First Day of Fifth Grade

Ethan on his 1st day of 5th grade

Today was Ethan's first day of his last year of Elementary School, a bittersweet moment if there ever was one. The biggest of the littles, poised on that precipice of tweendom, in that neither-here-nor-there land.

There is a whole year ahead of us, and much to do and learn, and yet there is that feeling of the beginning of an ending, that just... is.

Ethan has been at this school the whole time, entering as a just turned 5 year old so many years ago. Could he ever have been as tiny as the kindergarteners we passed today? Doubtful, but must be so.

We are seeing friends and acquaintances - both of us - that we haven't laid eyes on for nearly three long months, and the kids, they've all changed. Gotten taller, older, teen-y-er.

Ethan is about due for a big growth spurt, I can feel it coming. Mostly because his feet have just jumped a size and a half in two months, necessitating a major back-to-school shoe shopping session... Which he did not mind one bit, that fahionista son of mine.

Ethan's look saying "Enough pictures, Mom!"

I wish I had more time to enjoy all the feelings involved this back-to-school stuff, but I was deep in the detritus of my mother's life all day, getting ready to store or shed everything she and my father ever owned.

I jumped ship for an hour, left the great pack to pick Ethan up, necessary on his FIRST DAY of FIFTH GRADE.

But once I had shown up, my job was done. He really wanted to walk home ALONE with his friend, our upstairs neighbor. Not yet, my son, but I agreed to let them walk a half block ahead and make their own street crossing decisions, carefully observed, of course.

Walking home with a friend

Jake goes in on Monday: a new teacher, a new classroom, a new school building. Exciting and scary all at the same time.

Beginnings and ending, it seems like my life is all about that right now, as ever.

How did your back to school go?

Wordless Wednesday: Ethan has fun

Ethan in Mets stadium, on the field

This past weekend Ethan was back from camp, but Jacob was not home yet, so he had a little taste of only-childhood. He got a haircut, new shoes for school (his feet grown a size and a half over the summer!) and went to a Mets game with just us, his parents. Wanna see?

The "Back-to-School" Haircut:

Ethan's Haircut: before (looking Dylanesque again)

Ethan's Haircut: after (and yes, that's gel in there, he's STYLIN' now)

New Shoes:

new shoes - with laces

Mets Ball Game (they won!):

Up in the cheap seats, but still having fun

It just so happened that on Sunday there was a special "kids run the bases" event after the game, so Ethan got to break in his new sneakers in the red clay dirt of the Mets ball field. Awesome!

And then Jake came home and the fighting began again. Oh well, brothers, ya know.

My Mother, today (with Jacob)

Mom & Jake

I know the other day I promised a short post and then rambled on and on. But this time I really mean it!

Neither wordless nor quite yet Wednesday, though, so think of it as Pithy Tuesday or some such. (Nods to Elissa Freeman, she knows why.)

Today Jake and I went out to see my mother, while my upstairs neighbors rescued Ethan from a day of video-game-and-TV-watching boredom.

He has such a terror of spending a day alone (not ALONE alone, mind you, but alone as in NOT played with, being pretty much ignored by busy working parents) and is rather vocal in his displeasure with such arrangements. Especially when they involve proximity to his autistic twin brother.

Ethan does not believe me that no one has ever died of such a thing as boredom, and claims he will be the first. I have tried the "bored children get chores" gambit, but there is no yard work here in our tiny urban apartment, and all other housekeeping tasks would require MORE of my time and energy to teach and supervise him in than to do them myself.

So he empties the dishwasher and then it's pretty much back to entertaining himself with expensive electronics. (The horror, the horror...)

But today, my neighbor (whose praises I cannot sing enough) knowing all too well herself the eldercare-and-kids sandwich squash, took Ethan on for the afternoon.

Leaving Jake free to train out to Long Island with me, to spend some quality time with my mother. (Taking the train because the morning had been spent bringing the sadly falling apart old car to our lovely mechanic* to get a new tire, among other things.)

And we did. just. that.

And I didn't cry because Jake was there and I didn't want to scare him, but I held my mother while she cried about how reduced and sad her life is now, about how much she misses my father. Each and every day.

"He was my best friend," she tells me yet again, tears welling up in the good eye, and the bad.

A pair, they were. Bonded in love and friendship. Fifty one years.

I hated to leave her, when it came certainly time to say goodbye. "This is what I look forward to now," she said, apologetically, gesturing to the bingo game they were starting to set up in the dining room.

"Your mother is a good player, she wins!" piped up one of the other residents, declaring my mother a youngster, she a sprightly 96.

Yes she is.

Yes she does.

90 on Sunday.

We'll be back.


*If you're a New Yorker with a car, I love, and am happy to recommend our mechanic. Talk to Ralphie of NY Prestige Auto Repair, and tell him Varda with the ancient green Camry sent you. He'll treat you right. (No guarantees, of course, but that been my experience so far.)

I am linking this up with my friend Heather's Just Write

If it's not one thing, it's a flat tire and 103 fever

This is going to be a fairly short one, if not a particularly sweet one...

When I went to pick Ethan up from camp on Friday morning, I was so happy. It was a beautiful day and I'd had the wonderful company of my friend Deb on the 2 hour drive hour out, as I was giving her boys a ride home, too. We have a lot in common, had a lot to talk about, and the drive-time just flew by.

I arrived to find Ethan looking tired and miserable, sitting on his duffel bag. I was expecting a happy-dance reunion, and I got a nine-mile stare instead. A mumble and a tearful hug.

I was more than a little miffed to find out that the message I had specifically asked to be delivered to him, that I would be doing the LATE pick-up time, as I wanted to take the camp tour, and thus to NOT worry that he was one of the last campers being picked up? Had NOT been communicated to him at all.

I assumed that an hour of anxiety was the source of his listlessness and clinginess, his resistance to going on the walking tour of the camp. That and the fact that he had slept poorly the night before. As he reported to me, he had woken up in the wee hours to pee, and had had trouble falling back asleep.

I really should know better. When Ethan is THAT out of sorts, something is up. My friend Amy even wrote a blog post about this phenomenon recently (called: those who cannot remember strep throat are doomed to repeat it) that I had read, and actually shaken my head thinking *I* certainly knew better. The more fool, I.

Because it wasn't until after the tour (which I dragged him on) and after lunch in town (which he only ate half of) while in the local penny candy store (that he was being surprisingly less than enthusiastic about) that I heard him complain of feeling cold. And it was actually rather warm in this store.

That's when the bells and whistles FINALLY went off in my head and I put my hand on the back of his neck... to find it burning up.

Feverish Ethan, with friends

A short trip to the local drug store for a thermometer revealed a temperature of nearly 103.

Yikes! No wonder he'd been feeling so punk. I had also picked up some tylenol (pretty sure he would need it) so boy properly dosed, we cut short our poke-about town walk and got into the car to head home.

The medicine kicked in and the ride home was going swimmingly. That is until a large chunk of debris - it looked like a piece of bumper, maybe - flew off a car diagonally in front of us and landed in the road: hard plastic, light blue and deadly to our right rear tire.

After the bump of rolling over it, I felt the sickeningly familiar chunkity-chunkity-chunk and pulled over fast, on a section of I-80 that fortunately had a decently wide breakdown lane. The boys were all thrilled, they had never been in a car that had sprouted a flat tire, let alone one on a major highway - quel excitement!

After some time on the phone with AAA and being told we'd have a long wait for a tow truck to come to our aid, we were pleasantly surprised by fast efficient service.

Of course the spare was in a well in the trunk, which had to be emptied of camp duffels, and of course it was completely flat. But I had warned the operator of this probability and the truck driver actually had a tank of air with him, and the spare, once inflated, thankfully, held.

I was nervous as a cat the whole long, long final hour of our ride home; every bump or slight shimmy making me fear my cranky old spare had given up the ghost. But it held true and got us back home to the city with narry but a good tale for the boys to tell their friends.

I might have kissed the sidewalk in relief when we finally stepped out of the car, home safe, but I know how many dogs have peed there. So I settled for a friendly pat of the old girl's roof, telling her "Good car, good car."

And I thanked the parking fairies for delivering us a spot nearly right in front of our house. Not quite rock-star, but proof they weren't pissed at us, either.

Hopefully Jake's return home tomorrow will involve less highway adventure, and no need for thermometers.

Good News (AKA things that don't suck)

A lovely day for a party in Connecticut

It's been up and down all week, all month, all year, and well, let's just say for some time now we've been riding life's rollercoaster, or if you prefer your metaphors nautical: cast adrift on life's choppy seas, pitching and yawing along.

Today, this very moment, I am feeling well weary of the negative, of feeling I am one popped stitch away from coming apart completely at the seams. So I will, here in my own little bloggy fiefdom, do as the old song says and ac-cen-tu-ate the po-si-tive.

So, hereforth and forthwith are five things from the past week that DIDN'T suck, that might even qualify as good news...

1. Getting Mom out of the hospital and into a nice suburban rehabilitation center was totally the right move. We brought her out to Long Island on Thursday. She ate a hearty amount of lunch, was in good spirits, worked on one of her word puzzle books for the first time in a month.

And when the cute male admissions nurse left the room after saying he needed to come back and do a full body check on her? Her response to me: "He's cute. He can do a body check on me anytime." You go, Mom!

And the reason why we picked this particular rehab center? I have been very (what's the diplomatic word here?)... disenchanted with the rehab options in NYC. And then, it turns out that my Aunt Eva, my mother's sister-in-law is currently also a short-term rehab resident at this facility, which is a mere mile from her home. Which means my Uncle Walter, my Mother's brother, visits daily.

And now that my Mom is ensconced two doors down from my Aunt, my Uncle gets to hang out with BOTH his wife and sister at the same time. Also my doctor cousin Jessie (Walt & Eva's daughter) has declared this facility "definitely nicer than most of these type places." Win-win.

2. Jake had his annual physical on Friday and an appointment with the doctor we see for bio-medical issues on Monday. We're taking his two week hiatus between the end of the school year and the beginning of camp-school (what we call his six week school summer program to make it sound more like what Ethan is doing) to get in all our doctor visits.

Both doctors thought he was doing quite well, were pleased with his relative calm and very impressed by his art work (I showed them samples).

And then when he had to have blood drawn he was pretty good about it. A little anxious beforehand and during, but no screaming. And then he was a little fascinated by the process and talking about it a lot afterward  - "What color was my blood, Mommy?" and "What did the doctor do to my blood, Mommy?"

3. On Friday, during his daily recess basketball game, Ethan made a 3-point shot to win for his team. And the week before, at his afterschool basketball program awards dinner he had been given a special medal for "Best Defensive Player of the Year."

As basketball is his great passion these days, both of these things made him inordinately happy.

4. Jacob is clearly missing school. Three days into his vacation he decided to have Blue Bear and all his other stuffed animals get on the bus and go to school. Once they arrived, he recited the daily schedule to them and then he led them in a bit of "guided reading." They ate lunch and played ball and then went back home to their mommies and daddies. But he told me they would be going back to school the next day! (And they did.)

Part of preparing Blue Bear to "get ready for school" was to get her dressed in some doll clothes I had bought for her last year, when Jake had insisted she get dressed when he did. So the second day of this game, after getting BB on the bus (Jake's pillow), the monkey bus driver drove on to the next pick-up point.

But once there, Jake declared of the penguin and cheetah who were waiting for the bus: "They can't go to school, they're NAKED!" Yes! Social rule understood: No naked school days!

5. We were finally invited to an annual birthday pool party I have been hearing about for years, the social event of the 4th grade boys world at Ethan's school. And today was the absolute perfect day for a drive to Connecticut and a pool barbecue bounce castle trampoline party. (And it was easy to bring Jake along to this, as the hosting family has a SN kid of their own as well, and is particularly lovely and understanding.)

We returned slightly sun kissed, tired and happy. Perfect.

<*>*<*>

I am not going to mention my worries about Mom's blood pressure being consistently low.

I am not going to talk about how despite it being cute, my mother's level of disinhibition is troubling, indicative of more cognitive changes afoot.

I am not going to share my disheartening realization late last night that last year's bathing suit was not going to fit, necessitating a last minute, early morning run to the full-priced neighborhood swim and lingerie shop where I got to beg them to help me find a suit that hid the fact that I do not have a bathing-suit-worthy body.

I am not going to fret over Ethan's being positive he is going to win a basketball scholarship to Harvard, and therefore doesn't have to put too much effort into his actual schoolwork.

I am not going to bring up my thousand fears and anxieties about Jacob and his future.

Ac-cen-tu-ate the po-si-tive.

Back to kvetching and bemoaning tomorrow.

ishes

A yellowish android

Today, I'm taking a break from reporting from my mother's bedside. Not that it's any different, any better there. I just can't keep talking about it day in and day out. My guts are too wrenched, they need a break.

So tonight, a little bit lighter fare; a few moments with the kids. Remember them? Yep, still got 'em.

Jacob tonight was showing me the pictures he'd drawn today, while he was home after school with Daddy. As is usual, he engaged me in conversation the best way he knows how: asking questions he already knows the answers to.

"Mom, what color is Vegeta's* hair?" I had to look to see if he had been drawn as a regular Sayan or a Super-Sayan this time. "Black honey, it's blackish."

"What is 'black-ish' Mom?"

Oy!

-ish is such an abstract concept, I think he's never going to get it, but I try...  "You add '-ish' to the end of a word to show how it is kind of, almost, but not quite all of something. You say 'whitish' about something that is not quite pure white, but on its way there, in the white family."  And left it at that.

And five minutes later...

Jake: "Mom, what color is Freeza's skin?"

I look over. "It's pink honey."

"Nooooo, it's pink-ISH, Mommy!"

And so it was.

(Never underestimate an autistic person's ability to learn.)

And then Ethan, on the loooooong way home from an East side doctor's appointment (Obama in New York = traffic from hell) decides to invent a word. Or rather, a new meaning for an old word, create some slang, as it were.

"Mom, let's make up a new meaning for the word 'Bagel' - OK?"

"OK." I say, game for any sort of game that does not involve a screen.

"How about... a special way you stab something with a sword?" He suggests.

"How about something non-violent?" I counter.

"It's a hug. A special, special hug where you wrap your arms around someone and give them a squeeze like you're the bagel and they're in the hole in the middle."

"THAT I like!"

"Give me a bagel, Mom!"

And I do.

I so do.


*If you have anything like a nine year old boy, you probably know who all these characters are. If not, you are without a clue. They're from the Japanese anime cartoon world of Dragonball Z - one of Jake's current obsessions.

I am linking this up with Just Write, because I just wrote it.

SOC Sunday: Feverish

I am struggling a bit right now. I wrote a really tough post about depression yesterday, the absolutely most beautiful day of the year when I stayed inside in my PJs. But it is just too raw, and I am not ready to publish it yet. So for now, this from today: 

@@@@@@@

I lift Ethan's sweat-soaked body from my bed to carry him back to his.  Although his shirt is drenched through, his back feels cooler now. The fever's broken. Finally.

I silently wish him sweet dreams and an easy rest of the night's sleep. I start to make plans to scotch all my plans for tomorrow. I'll have a sick kid home with me to attend to, and he'll need lots of attention as well as chicken soup and saltines. I am deeply praying it's just a random 24-hour viral fever thing, and not the flu. Please. not. the. flu!

We have been, HE has been, lucky. So far in his nearly ten years on the planet he has had one flu, two strep throats, a few handfuls of colds, three maybe four stomach bugs. (Yes I *AM* knocking on wood and spitting over my left shoulder as I write this.)

We have had no stitches, no broken bones, no trips to the emergency room. And not for his brother Jacob either, and for a sensory seeking kid with autism that;s quite a miracle, I am well aware.  (Rest assured: more knocking and spitting.)

But the downside of tihs is feeling ill hits Ethan really hard, feels very abnormal to him, deeply frightening. He came to me in the bathroom this afternoon as I was FINALLY going to get to take my shower. He burst in crying "Mom, somethings wrong! My teeth are chattering and I feel hot one minute and cold the next and then both at the same time! What's wrong with me?!?"

He was genuinely perplexed and panicked, it had been that long since he'd had a spiky fever. When I went to feel him he was massively hot clear to halfway down his belly. That's between 101 and 102 in my mom guestimation book.

I calmed him down by reassuring him it was "just a fever" and started the alternating motrin & tylenol train rolling. Within an hour he was slurping ginger ale and playing a calm Wii game. But by bedtime he was pretty punk. And I was wiped out too.

And, on top of this?  Jacob was in massive meltdown mode all day because he lost TV for the WHOLE day due to some early bad behavior. Because I, like an idiot, had said - "If you do that ONE more time you will lose TV for the whole day!" - and then I had to follow through. And tihs was before Ethan got sick. We survived. But that's a whole other story for another day.

I never did get my shower.

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Not Really Wordless Wednesday: Mugging

No, not THAT kind of mugging (thank goodness)... This kind:

Last Sunday was one of those unseasonably warm days. It was the very end of Spring Break. Ethan had a birthday party to attend on the East side, very near my Mother's place, so we went to see her for a short visit afterward.

After dropping her off in the dining room, then stepping out into the late afternoon sunshine, I had a brainstorm: Ethan and I should go out to dinner; just Mother and Son, enjoying a rare balmy April evening.

I called Dan who was home with Jake and told them they were on their own for dinner, and he was OK with that.

He knew Ethan had been complaining that "Jake got all this time alone with you Mom while I was in basketball camp, and I didn't get any." So we needed this time together.

The Barking Dog Diner, one of my favorite casual local joints, was just two blocks away, and had a slew of outdoor tables.

After we put in our order (I had my usual grilled salmon sandwich on 7-grain bread - the one I had craved constantly during my pregnancy) we had time to kill together sitting around the table.

Ethan was itching to get his hands on my iPhone and play games, but I didn't want to lose him to the screens. I suggested we take advantage of the sunshine and his cuteness and take some photos. Hence the mugging.

Ethan LOVES to pose dramatically, though he often cracks himself up doing it. He has a hard time keeping the "brooding" face on. Goofy is much easier for him.

Altogether? A perfect evening.

Planets

Venus & Jupiter in the sky - so NOT in New York City

Tonight 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 of 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 Jake that we'd be back within the hour, and I sorely did not want to abuse my favor currency with them, would surely be needing to spend it again soon.

Jake himself was delirious to be upstairs with his "best friends" -- the four year-old sister of a pair of brothers who are Ethan's good school friends, and their white terrier, Mac, with whom Jake is nearly as obsessed as he is with our cat.

Ethan and I were on a mission, because I had failed in my mom-duties today: I was to have picked up a particular book for Ethan, another in the once-seeming-endless Warriors series that we are now close to outflanking.

The latest installment comes out in April, and the one before that will appear in paperback the same day, when we will finally snatch it up. I adamantly refuse to purchase these throwaway books in hardcover, so Ethan is going to have to get over his aversion to the library if he wants to read that last one anytime soon.

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

I will not mention again the hundred wonderful books, sitting uncracked in our apartment; forlorn, unbeloved, rejected out of hand. Ethan is a picky reader. But for that he is now these past two years an avid reader, I am eternally grateful. I will forgive the undeserved scorn he heaps upon those poor maligned tomes, for the joy suffusing his being as he greedily devours the chosen volumes.

Ethan is in high, silly spirits as we walk the busy Broadway blocks to our local Barnes & Noble, and I am grumpy, nursing a throbbing elbow that may be a cracked bone or terribly distressed tendon. No way to tell until I visit the doctor, which I have such a deep aversion to doing.

I don't mind doctors and their offices, really I don't, feeling quite at home there from the countless hours spent looking after my elderly parents' health. And I kind of like peering inside my body, the few times I have myself merited scans or x-rays, mysteries revealed in dramatic, if ghostly, black and white.

But it's the time I dread; the time, the time, the time I do not have.

And so Ethan skips and darts around me walking down the street, as much crazed mosquito as boy, as I protectively cradle my elbow and brood.

"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 steel myself for it. 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 inconceivable column, my tanks in the red zone, surely running on fumes.

<^>^<^>

Mission accomplished, book in hand, Ethan and I pushed through the store's glass doors into a city become near 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, blindingly bright in the deep cerulean sky that slices between the highrises, thankfully not obliterated. These two gods are in a much celebrated love fest this March, a conjunction the likes of which will not manifest again until next May.

And yet, while they appear to be quite close, kissing distance on the Ides, 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 dear mudball.

They are in fact deeply distant from each other, Venus lying sunward from us, drawing us in toward the heart of our solar system, while Jupiter circles round us from the outside. To gaze upon Jupiter is to reach out toward the distant galaxies and the universe's noisy edges at the jagged beginning of time.

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 the 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.

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First Love, Lost

"I feel so empty" Ethan wails, sobs racking his lithe body. "I will never, EVER be happy again."

"Oh, babe, I know. Loss hurts. But there will be others, really, you have to believe that." I try to soothe with my feeble, old, mom-wisdom.

"No, not like this one, it will never be the same, it was PERFECT. My first!" Ethan is the picture of abject misery, poster child for a broken heart. So deeply teenagerish, how could he only be nine?

"I know honey, you are sad and disappointed. this hurts, this sucks." I am doing this by the book: first the empathy and mirroring, then the (as yet futile) attempt to incite perspective. 

"I hate her, I hate her, she was so wrong to do this, she needs to pay!"

I want to join him in his wrath, want to rain down fire upon the person responsible for my son's pain and loss, his inconsolable sadness. But I know it is my job to steer him clear of these dark waters, to be the cooler head at the table.

"Nothing lasts forever, honey."

"But this was my first, it was PERFECT."

"Yes, babe, it seems that way now, but you WILL be able to love another, I'm sure."

"Nooooooo! No basketball will ever be the same, that one was THE ONE!"

Yes.

We're talking about my son's first, dearly beloved full size basketball, a Wilson; the one he got this past spring, almost a year ago now, carried around with him nearly every day of his life, ever since.

His one true love.

What, did you really think we were talking about a girl?

Please. He's only nine.

And yet, the feelings, the words? A lost first love, for sure.

Startling in their intensity, but then my son is, ever, intense.

And now, you may be wondering how did his life-love, his perfect first ball disappear?  

What happened was this:

In the schoolyard that morning, waiting for the teachers to emerge and ferry their charges to classrooms, A Rule was broken. While balls may be played with in the yard at pick-up time, morning line-up time needs to be more orderly, less chaotic, so balls must be stowed or held, quiescent in still hands. Otherwise, temporary confiscation is the penalty.

But 9 year-olds are 9 year-olds and the sight of an unoccupied ball drives them to frenzy. They often get played with. Even if Ethan is trying to be obedient, a friend of his will come up, knock the ball out of his hands, and start to toss it about. Cries of protest will go unheeded. Fun will ensue.

But, it must be said, regular reminder letters sent from the Assistant Principal to the contrary. enforcement of such rule is lax, haphazard and spotty. And in all the years of ball-carrying, Ethan had never suffered a confiscation until now.

And thus he wasn't quite sure of the way of it: who actually held the ball, and how and when could he ask for it back.

When I arrived that evening to pick Ethan up from afterschool (with Jacob in tow this day, of course, just to complicate matters), I found a wide eyed Ethan with trembling lip, telling me that no one could find his ball, nor had any idea where it was.

Sure I could quickly resolve this, we began to investigate. We chased a lot of wild geese, up and down the stairs of the school, Ethan growing ever and ever more despondent with each dead end.

Finally, we spoke to the principal, who was still in the main office, and she suggested it was best to throw in the towel for the night, resume investigations during school hours the next day, when the confiscating aide (the "She" of Ethan's vowed vengeance) would be present.

But then, on our way out the door, someone confided in us that it's not the first time a ball has gone missing and that we shouldn't get our hopes up, it was likely gone.

And thus started the full on breaking of Ethan's heart.

And it did not help, in any way shape or form, that Jacob was with us that night, as Ethan howled out his pain on the sidewalk. Because Jake was being Jake: excited and engaged by Ethan's sadness and upsetness, alternating between empathy and laughing delight. Both reactions exceedingly annoying to his brother.

Not only was Jacob enjoying Ethan's big emotions, he was also narrating them. Loudly.

Nothing a nine year-old boy wants to hear when he is trying to keep it together, in his autistic brother's piercing voice: "Ethan is CRYING, Mom! (big giggle) Ethan is SAD!"

And Jake's attempts at "help" even worse: "Take a DEEP breath Ethan! Calm down, Ethan! It's OK Ethan!" Yikes!

Eventually, there was calmness. Bargains were made. In spite of the late hour and still as yet unfed children, we trudged to the nearby Models to see if we could purchase a replacement ball only to find nary a Wilson in a sea of Spaldings and Nikes.

Then we found out that, well, yeah, Ethan's true love WAS a super special, only rarely available model, and it had been a special purchase at the time we'd gotten it.

A different ball was finally deemed acceptable and purchased. Back home Ethan's equilibrium returned, with only occasional declarations of "I still feel empty" interspersed with evening business as usual.

And it all blew over in a few days. (Especially as the original ball was eventually located at the school.)

But I have to say the reaction, the extreme over-reaction? Did give me pause. Not one to let things roll off his back, he feels deeply, this boy of mine.

And I know this is just a slim preview of what is coming, the first actual girl to break his heart. The earth will quake, a lake of tears will be shed, I have not the slightest doubt. And I will be sorely pressed to control my urge to clock her one.

And then, this, really gave me pause:

When I had tried to console him with the idea that it could be worse, that his ball could have rolled into the street and been squashed dead, absolutely gone forever? He countered that THAT would actually have been better, a clean break.

And added that a big part of his pain was in the knowing that: "My ball is out there, but someone else is playing with it. It still exists, my perfect ball, but NOT for me. Someone else gets its perfect bounce, gets to shoot hoops with it. I just HATE thinking of MY ball in someone else's hands."

Hmmm... just change "it" to "her" and... well, it gets kinds creepy.

Time for a little talk about what makes healthy relationships.

I want to make sure he really understands that the "better dead than in someone else's hands" concept is NOT okay when applied to human beings. Capiche? 

So, on that romantic note: Happy Valentine's Day folks!

(Yes, this is my Valentine's post. I know it's a day late. I have a bad cold & feel like crap. At least it's about love. Unlike last year, when I wrote Not a Valentine's Day Post)


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SOC Sunday: Boys Being Boys

It's a cold, windy Sunday, here in New York. Time to curl up with a warm computer, open up my brain, and spew forth.

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Walking down the street yesterday with the full family plus a friend of Ethan's. we fell into a fairly usual configuration: Dan and I side by side talking, Jake holding my hand on the other side, (occasionally kissing my arm), and Ethan and his friend Pete whirling like dervishes up and down the sidewalk.

They were pouncing and springing, sprinting up the steps of brownstones and leaping down, jumping onto each others backs like clumsy ninja, wrestling and brandishing invisible swords - although today, as we had just emerged from the 3D re-release of Star Wars: The Phantom Menace, it was light sabers.

I'd like to say it was the combined influence of the movie and the chocolate milk boost from the lunch we had just eaten, but actually, no, this was par for the course. This is how Ethan "walks" down the street with his friends. 

And then I usually become "that mom" the one yelling at her kid from half a block away "Look out! Pay attention to the other people! Don't bump into that baby/old lady/man in a wheelchair!" And apologizing profusely to my fellow sidewalk users.

Yesterday we wisely removed ourselves from Broadway's Saturday swelled crowds immmediately and were headed west to Riverside so the boys could "get their ya-yas out" on the park side of the street, cavorting unimpeded by intersections all the way home.

When we were not quite there, while standing at the street corner to cross West End avenue, I heard my husband yell out, seemingly to the air "They're boys, this is what they do."

When I questioned him what THAT was about, he told me that we had been passed by a nicely dressed woman walking with her one perfectly behaved little girl, who'd had a look of abject horror on her face. He really doesn't like to be judged by strangers.

Me? I'm out with the kids a lot more. I've kind of gotten used to it.

Nevertheless, I started running a fantasy in my head of things I might have added to what my husband yelled out, just to taunt the lady - like: "And one of them will be dating your perfect daughter some day!"  or, even darker: "And just think, your daughter will be losing her virginity to one of them someday in the less-diastant-than-you-like-to-think future."

Yes, there are days I'm so glad to have just boys.

Ethan & friend at Riverside Park cannonballs

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New to SOCS?  It’s five minutes of your time and a brain dump.  Want to try it?  Here are the rules…

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Go (the F) to sleep, Ethan.

Ethan was talky, talky, talky tonight at bedtime.

Again.

Sigh.

The gems:

E: You know what, Mom?

Me: Ethan, it's very late, you're going to be tired and cranky in the morning. Go to sleep now.

E: Know what I love the most? Life! Being alive!

Me: That's great! I'm glad you feel that way.

E: Know what the best thing in the world is?

Me: Go to sleep, Ethan.

E: Getting to be alive.

Me: OK, Ethan that's a great feeling, now stop talking and go to sleep.

E: Want to hear a great tongue tickler word?

Me: No, I want...

E: Zucchini! Isn't that a great word? I love tongue ticklers.

Me: Ethan, talking is keeping you awake. Stop talking, lie still and you will fall asleep.

E: But what would happen if someone tried to REALLY tickle your tongue, like stick their hand in your mouth and...

Me: Tongues aren't actually ticklish, Ethan they're... STOP we are not having a discussion, you are going to sleep.

E: But what about...

Me: No but. Stop. Go to sleep.

E: So is Tigerclaw really all bad or is there still some good in him?

(Yes, he's just started reading the Warriors series. Months of confusing, similar sounding cat-character names lie in my future.)

Me: You'll find out yourself, as you read. You're not roping me into book talk. Shhh. Sleep.

E: But do you think...

Me: Shhhhh.

E: Mooooom, I was in the middle of saying something!

Me: Yes, and that's the problem. You cannot talk and sleep at the same time.

E: But I'm not sleepy, and I WANT to talk!

(lightbulb going on over the mother's head)

Me: You miss Dad, don't you? 

E: Yes, I do, I really do! (big sniffle) I just feel so sad that he's not here and it's going to be days and days before he comes back home. I wish we could just instantaneously transport ourselves to Seattle so he could kiss me goodnight.

Me: Me too, honey, me too. I keep thinking he's about to walk in the door at any minute, then I remember he's on a trip. We'll call him tomorrow, OK?

E: OK, Mom.

(forehead kiss)

Me: Sleep now, babe.

E: I love you, you're the best mom in the whole world. For me that is. I'm sure everyone else thinks their mom is the best, too.

Me: I love you, too, kid. Now, no more words, REALLY. Time. For. Sleep.

(2 minutes later, cue light snoring)


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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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