Sunday, July 31, 2011

SOC Sunday: Whew!

THANK GOODNESS it's time for a Stream of Consciousness Sunday post, because I just don't think I have a "real" post in me. And the typos in these things? Part of the charm. Wheeee, letting 'er rip.....


Hey it's August tomorrow. AUGUST!!!!  That means I'm done! Slapping this post up on my blog means I got through NaBloPoMo - a whole month of posting every day. WHEW!

Proof that  I survived my boys' 9th birthday party yesterday exists here: I lived to write this post today.  It has been an insane, whirlwind week. And I have no idea how I am going to be ready to leave on Wednesday afternoon to be away for 5 days. I've never left me kids for 5 days, not even once. but they are 9, nine, NINe! (amazing how they are getting older while I have'nt aged at all)

I will surely forget to pack underwear or something equally important, but I am going to a city after all, not the ends of the earth, so nothing is going to kill me (I hope). I am excited and also daunted. Not by the conference (totally un-anxious about that) but by all the prep.

Yes, I made amazing birthday cakes even though one of them had a slight disaster on the way to the party (note to self: round cake + travel = oops!) and picture proof will show up soon.  Today we go to a friend's place up in the Bronx where there is a pool.

I  have always had the boys parties on Sunday before, tihs is the first Saturday, so since they were 4 and in camp / summer school I was always able to say goodbye and then clean up & rest / recuperate in peace the day after. I so do NOt have the energy to entertain boys - so plopping them in a pool and me beside it and in it occasionally. a godsend *(Thakns. Lori)*

The fact that I have one bathing suit that still fits. excellent. (Note to self: next time you lose weight do NOT give away all your "fat clothes" especially the bathing suits.)

OK, guess I gotta get out of my jammies now and get the family packed up and out the door!


Well, I just got a phone call telling me the pool day may be off - my friend's elderly mother is not feeling well, and she may have to take her to the hospital.  Oh, well, so it goes in Sandwich Generation life. Now to come up with a plan B...

New to SOCS?  It’s five minutes of your time and a brain dump.  Want to try it?  Here are the rules…
  • Set a timer and write for 5 minutes only.
  • Write an intro to the post if you want but don’t edit the post. No proofreading or spell-checking. This is writing in the raw.
You can do it, too!  Click on the picture link and let's hear your 5 minutes of brilliance...

Looking for comments? To read or leave a comment, click on THIS post's title, or HERE, to bring you to the post's page view. Comments should appear below.

Saturday, July 30, 2011

SNSS: A Family Mosaic

Today's wonderful SNSS guest is Mama Apples of the blog Apples and Autobots. And she? Really has her hands full. Really. And that's an understatement. Think I'm exaggerating?

The tagline for her blog is: "The chronicles of two parents raising four children: a high energy little boy with Asperger's, his girly girl neurotypical twin sister, a quirky four-year-old daughter (who also has autism), and a nineteen month old baby boy in Early Intervention. Oh... mom also teaches middle school. Welcome to the crazy train!"

Yes. Four kids. Three on the spectrum. And a household full of love and understanding. Right now they are holding their breath to see where on the spectrum the littlest one lies, hoping that they can stave off regression.

Mama apples is a wonderful writer, a pleasure to read. Incredibly moving when she's being serious, incredibly funny when she'd being lighthearted.     

So come now, read about her unique and beautiful family here:


A Family Mosaic - by Mama Apples

My husband and I are the parents of four children.  Three of them have autism spectrum disorders and one does not.  Our children’s relationships are incredibly complicated.  I suppose they are like a mosaic — beautiful from a distance, but if you peer closely, you can see the cracks and gaps that we’ve had to fill in over the years, the places where the pieces don’t quite meet.
The individual pieces of our mosaic are, on the surface, beautiful in their simplicity.  Yet, careful inspection reveals complex patterns and even a few stress cracks born of being forced together.

‘Bot is our oldest child.  He’s nine, and he has Asperger’s Syndrome.  He’s like a gaudily painted piece of porcelain.  He’s a clown, a connoisseur of slapstick.  He tries to be a little tough guy, but his autism leaves him brittle, easily broken by too much sensory input or changes in routine.
His bright, colorful personality isn’t always enough to camouflage his chipped spots. He doesn’t socialize well, even though he desperately wants to, leading him to say embarrassing things to strangers.
At times I can see his twin sister visibly cringe at his antics.  Their relationship is strained more than non-womb mates because Princess never gets a break from him.  They spend recess at school together.  They can’t help but be compared to each other by teachers. This is true of all twins, but autism adds an entirely different dynamic to their twinship.

Chronologically they are only a minute apart.  However, ‘Bot is years behind Princess socially and emotionally.  Princess has remarked before that she wishes she’d have had a twin sister instead of a twin brother.  I can’t help but wonder if she feels twice cheated—denied the sister she wanted and forever paired with a brother so intrinsically different from her.

Princess is like a piece of highly polished quartz rock.  She is very girly and creative.  She has a sparkling smile and a keen, sharp mind.  She possesses a lovely spirit.  If you spend a significant amount of time with her, you can see that she is mature for her years.

That in itself is not a bad thing, necessarily, but her maturity is the result of nine years of having autistic siblings.  Princess has to make concessions to her siblings on a daily basis, whether it’s giving up TV time for four-year-old Tinkerbell to watch the same movies over and over, or allowing ‘Bot to push the shopping cart, even though she really wants to do it.  It’s easier not to fight him.  And it’s very unfair.

However, what worries me the most for Princess is not the number of times she has to give up a little.  Those are minor scratches on the surface of her soul.  It’s the deep gouges that worry me.  The times when her twin explodes and focuses his rage on her.  We’ve had to physically restrain him many times to keep him from hurting her, because it’s true, you know, the saying that you hurt the ones you love the most.

The scars left when even her accomplishments are a sacrifice.  You see, she’s an honor student, and ‘Bot struggles with academics.  Who do you think gets the most homework help? 

Chores are a battle in most families, but my kids take it to a whole other level.  ‘Bot and Tinkerbell have a hard time with following directions and staying on task.  Princess always ends up doing the lion’s share of the work.

We can keep glossing over these things, but eventually there will come a point that a girl’s day with mom just isn’t going to be enough to make her feel better.

And yet, she’s so strong.  She was one of ‘Bot’s first therapists, forcing him to engage and interact.  I firmly believe that the early socialization she provided him made a dramatic impact on the course of his autism.  She’s a wonderful big sis to the little ones.

Yes, she gets frustrated, especially with Tinkerbell, but she’s so good with both little ones.  She does speech a lot with Tugboat, and she did floortime with Tinkerbell.  She endures with a smile and adheres to her siblings with loyalty and love.  However, inside of her is a little girl who has always had to be so much more than just a little girl.

Tinkerbell, our daughter with autism is like a fine piece of china.  She is wafer thin, most likely from hours and hours of pacing and walking in circles.  She inspires protectiveness and gentleness in everyone she meets — well, almost.

On one hand she and ‘Bot are perfect playmates. ‘Bot’s social age and abilities are closer to age five or six, so he and Tink are on the same level in many ways.  Also, ‘Bot likes to be in control of play situations, scripting what should happen to everyone involved.
This works out brilliantly with Tinkerbell, because like many girls with Asperger’s/HFA, she is a born imitator, and she loves being told exactly what to do!  They generally play well, but we have to watch them carefully because ‘Bot tends to get too rough without meaning to hurt her, and when he does get mad at her, he’ll push her down or hit because he doesn’t make allowances for her age.
She also picks up his bad habits. A few weeks ago she embarrassed my poor husband by talking about her “nuts” in the OT waiting room!

Tinkerbell loves to follow Princess around.  Out of all of our kids, I think that their relationship is the most “normal.”  Tink is the typical annoying little sister, and Princess loves her to bits.  I get so much joy out of watching Princess paint Tink’s fingernails (after Tink has spent hours begging), and I can’t help but laugh at Princess’s incredulous expression when Tinkerbell immediately washes the polish off.

Tugboat is my beautiful, colorful piece of glass, the sharp edges of autism clearly present, but there’s time yet for Early Intervention to dull the edges.  His place in our mosaic, however, is already clearly established.  He is the baby of the family. 

Tinkerbell calls him “Baby Wild.”  She has a point. He manages to wreak havoc everywhere he goes.  He plucks blocks out of Tinkerbell’s line of toys.  He lines up bottles of Princess’s nail polish.  He loves roughhousing with ‘Bot, to the point that they aren’t allowed to play unsupervised. 

He is loved by all of his siblings, though it was a little rough between him and Tinkerbell in the beginning.  His wet fingers and toy grabbing didn’t exactly endear him to her.  Tugboat has communication delays, but the love he has for his older siblings shines through his eyes.

My husband and I practice the art of parenting day by day, carefully shaping and arranging our mosaic.  I have no idea if we’re doing it right.  Nothing is set just yet.  Sometimes one piece of our special puzzle needs to be mended, so we place it in the center and do the best that we can to hold it together.
Does that make any of the other pieces less important?  Of course not.  If one piece were removed, our beautiful creation would be left with a gaping hole, and we’d never find another piece that could perfectly fill that space.
What frightens me is the delicacy of the entire thing.  The idea that the pieces could be so easily broken, even our strong little chunk of granite.  I just pray that the glue we’re using, our love for each other and each of them, is strong enough to weather any storm.


I am so impressed by Mama Apples, how she takes her family's very complicated situation in stride. I struggle to balance the needs of my two. I can barely imagine doing it with such a disparate four.

And now that you have read her here you MUST go back and read her on her blog, Apples and Autobots. This is not optional, you really must.

Start with this post about a TOUGH day in sibling-land. Then go to this lovely one, about those moments of seeing how different children are in comparison to others, and coming to terms with acceptance.

Read this one, but not when you are already sad or depressed, it might make things worse at first. It's the tale of an awful meltdown, last winter and Mama Apples most painful experience, as a parent. And then this post is a call to arms for how folks can help a family when they see a meltdown in progress.

In this post, she has a line that I just found so wonderful for both its imagery and how it resonated, that I just have to share it: "I wish I could pry off the top of his little head and look around for a while at what's going on in there."  Anyone who has a child with a communication disorder, or whose kid thinks in a unique and normally opaque manner is nodding their head right now (and hopefully not looking for the can-opener).

Finally, you should follow Mama Apples on Twitter, and go "like" her on her Facebook page, where she is just as outspoken, lovely, lyrical and intimate  as she is on her blog.

Thank you so much, Mama Apples for gracing my blog with your beautiful words about your amazing family. (And for saving my butt. You know why.)

Looking for comments? To read or leave a comment, click on THIS post's title, or HERE, to bring you to the post's page view. Comments should appear below.

Friday, July 29, 2011

Nine Years and Counting

Nine years ago today my life changed...




(At exactly 10:12 - and then again at 10:13 - AM)

In ways I could not possibly presage, did not thoroughly fathom until, suddenly, there were two hearts, beating furiously in the world, that had moments ago echoed solely, safely, inside the cavern of my body.

Their cries piercing the hushed hum of the operating theater, the chill but joyous room where I first met my sons, and then cried out, myself, as they whisked them away, too soon. Too soon!

I squawked, demanded. (As much as a half-bodied woman, pinned to a table, being re-viscerated can be said to demand.) My obstetrician, a mother herself was supportive. I really loved her.

She was whip smart and had a wicked, dry sense of humor. She actually came in on her day off (also, coincidentally her own mother’s birthday) to deliver my boys, as at 39 weeks it was time for them to come OUT.

Hospitals are full of rules, and C-sections are very medical ways to birth babies. It’s really, truly surgery. They take a baby out, hold it up in the air in front of you for the briefest of moments, say “See, here’s your baby?” and then they whisk him away to do hospitally things to him.

As I was making noises about wanting to actually HOLD my babies, there was resistance from the nurses, they had their jobs to do. But my wonderful OB had my back. “You’ve got two, hand one over to her!” she commanded, and thus I found my son Jacob thrust into my arms, wrapped up like a little burrito in one of those ubiquitous striped hospital blankets.

I held him close to my face, peered into his.

The moment my son and I locked eyes has forever been seared into my brain. I had never experienced love at first sight before, never known that singular moment when everything turns betwixt one breath and the next; a shift of axis wobbling proportion.

And here, now, was that for me. Because here was the face of my son, unknown until the moment before, and now emblazoned on my very soul; and I knew with unwavering certainty that it was the beginning of our story, a lifetime of love.

And I knew that here was someone, one of two someones, whom I would die for. Someone for whom pacifist me would fight, tooth and claw, for; whom I would throw myself in front of a bus for.

And then, when they took Jacob from me and handed me Ethan, my heart doubled up, while remaining the same. An unexplained phenomena that just is: how a heart can be full to the brim and then fill again without ever emptying, expanding infinitely but remaining intact. 

My heart was still firmly encased in the cage of my body, and yet now also walking around the world beating away inside these two tiny beings at the same time. How can that be? Shhh, that’s one of the secrets of motherhood.

Finally they were done putting me back together and I was sent to the recovery room next door, my boys to the maternity ward upstairs.

I sent my husband with the babies, to join the grandparents, aunts, uncles and cousins who were gathering to meet the newest family members. I went to recovery alone. And thus began the longest two hours of my life.


This is another piece of the long story of my boys' beginnings.

Earlier this summer, I showed the world how I "rocked my bump" in a post I wrote to link up over at Shell's place.

Last year, I wrote a letter to my sons on their eighth birthday, recounting my joy at their coming into the world.

I thought I would have told my whole conception, pregnancy and birth story by now. I thought I would have had the time, that my life might be less of a whirlwind this year (foolish me). And yet it seems to spin, if possible, even faster still.

But no matter how quick the dance, I must pause each July 29th to give thanks, to marvel again at the miracle (modern, medical) that is the existence of my two beautiful boys.

Hello, my loved ones.

Happy Birthday, Ethan and Jacob.

Jacob and Ethan.

Today, nine years ago you graced the world with your presence.

Today, nine years ago you made me a mom.

My world has never been the same.

Thank you, from the top to the bottom of my heart.

I'm linking this post up to Maxabella's I'm grateful for... and this week I don't have to tell you why.

Looking for comments? To read or leave a comment, click on THIS post's title, or HERE, to bring you to the post's page view. Comments should appear below.

Thursday, July 28, 2011

Nearly There

It's official.

I've run out of things to blather on about today.

But I'm doing NaBloPoMo, committed to posting every day this month, so blather I must.

I *AM* going to finish this thing, and I am so nearly there. Four more days to go.

Actually that's not true at all, the running out of ideas thing. I have a million ideas, but what I have run out of, of course, is time. I have a dozen half-written posts, some of which I am truly excited about and am looking forward to finishing, but just don't have the time to do them justice right now.
Time, time, time. What I need, and have so very precious little of... time.

Between the boys' upcoming birthday (tomorrow! nearly there for that, too), the upcoming trip to BlogHer with all the childcare planning and other attendant preparation that goes into that  -- vitamin pours for Jake, playdates set up for Ethan, emergency contact lists to write, new babysitters to train, and oh, yeah, packing *my* stuff for the trip -- I am swamped.

I have really enjoyed writing every day, feel it's kicked my writing mojo up a notch into high gear, even. In fact, what I seem to want to do, most all the time right now, is to write. (And yes, I have a post about *that* half-written, sitting in the hopper.)

But also? I am looking forward to being able to take a break, a day off if I feel like it, or if my kids' birthday is the next day and there are cakes to make, presents to wrap, "To-Do" lists to write, check, curse at.

So why are there not enough hours in the day? Well, I am possibly not the most efficient person on the planet. Something's got to give, and lately it's been sleep. And that is never, not EVER, a good thing.

But I can't help myself. I have blog posts to write... birthdays to plan... blog conferences to pack for... friends to tweet with... playdates to schedule... a husband to (occasionally) talk to... blog posts to read and comment on... social stories to write for Jacob... an elderly mother to visit with, shepherd to doctor appointments... vitamins, supplements and medicines to inventory, buy and pour for Jacob... an elderly Aunt's care to oversee... breakfasts and dinners to serve, lunches to pack... autism research to keep up on... zombies to kill... bathroom conversations to have with Ethan...

And getting enough sleep, taking care of myself? Too often just falls to the bottom of the list. Forgotten.

Next month I am going to think about, write, focus on that: taking care of me, figuring out how to put my own oxygen mask on first (as the eloquent Stark. Raving. Mad. Mommy puts it).

But tonight I am going to wrap up this post, finish icing the GF/CF cupcakes for Jacob's in-class birthday celebration tomorrow, go over the next week's crazy calendar with my husband, and sink into bed exhausted, to catch what few hours of sleep I can before the alarm goes off at 5:45 and I get up and do it all over again.

G'night all.

Looking for comments? To read or leave a comment, click on THIS post's title, or HERE, to bring you to the post's page view. Comments should appear below.

Wednesday, July 27, 2011

Wordless Wednesday: Counting up to 9

Well, seeing how Jacob and Ethan's 9th birthday is on Friday, I thought I would use this week's Wordless Wednesday to share some pictures of the boys growing up, getting ready to make their mark of NINE full years upon this planet. 

First Ethan (for he *IS* one minute older, after all):

Ethan newborn (1week)
Ethan at 1
Ethan at 2
Ethan at 3
Ethan at 4
Ethan at 5
Ethan at 6
 Ethan at 7
Ethan at 8
Ethan nearly 9
And then came Jacob (one minute later):

Jake newborn (2 days)
Jake at 1
Jake at 2
Jake at 3
Jake at 4
Jake at 5
Jake at 6
Jake at 7
Jake at 8
Jake nearly 9
Happy Nearly Birthday, Boys!

I’m linking up to Wordless / Wordful Wednesdays all OVER the place... at Angry Julie Monday... at 5 Minutes for Mom... at live and love...out loud... at Dagmar*s momsense... at Parenting by Dummies.

Looking for comments? To read or leave a comment, click on THIS post's title, or HERE, to bring you to the post's page view. Comments should appear below.

Tuesday, July 26, 2011

Coming Along

Jacob’s speech is shifting again, he’s moving ahead, coming along… swimmingly.  The pace is fairly glacial, and so like the encroaching ice it moves so slowly you don’t notice it has crossed the line, carried on to elsewhere until, suddenly seeming, it is there!

Jake used to ask everyone questions that he already knew the answers to: "Is that a baby?" while staring at a baby. Contrary to the standard “book” on autistic people, Jake actually found it easier to ask a (straightforward, factual) question than to make a declarative statement.

Well, that seems to be shifting now, and Jake is just declaring away to any and all around him. Thankfully most of the people he talks to are willing to play along, not delve too deep into why a big kid is sounding so much like a little kid.

There is no meanness. Yet. But, then again, he hasn't tried talking to too many teenagers. Yet.

Jake to a man walking a dog the other day on the street: “Excuse me, Man? You’re walking your dog!” Luckily the man smiled quizzically then kindly, and agreed that yes indeed, he WAS walking his dog.

When we took a train ride recently, on the return trip home the train was very crowded and it took a long time for the conductor to make her way through the car. Jake was leaning out into the aisle watching her, clearly impatient to talk to her.

He started to shout out to her, but I made him wait until she was close. When she was two rows away from us, he just couldn't contain himself any longer...

Jacob: "Mrs. Conductor!"

Conductor: "Yes?"

(I couldn't wait to hear what in the world he was dying to say to her; really had no clue.)

Jacob: "I have a ticket!"

Conductor: "And I'm going to come punch the heck out of your ticket in just one moment. Wait and I'll be right there."

When she comes to take his ticket, Jake is beaming, then makes a request: "Make a happy face, please." (The conductor on the outgoing train had done that, pleasing Jake no end.)

Conductor: "Okay..."

And then? Jake kicks it up a notch: "With teeth, a happy face with pointy teeth!" (I'm thinking: no more vampire movies for you, my son.)

The conductor, bless her soul, is game: "Well, I'll try..."

And she did. And Jake was pleased. It doesn't look much like a vampire happy face, but she get's an A for effort and kindness, for sure.

The other day I was listening to Jacob tell me something when it hit me like a ton of bricks: He was using complete sentences without prompting.

A year ago, while he was certainly capable of using complete sentences, we mostly got single words and short phrases (if it wasn't a completely scripted phrase) unless we pushed for more. And so we had to push, push, push him. And deny him, pretend to not understand. If he could get what he wanted with two or three words, that's all we'd get.

Instead of "I want to want to wear the red shirt today, Mom, can I have it please?" (now) he would say "Red one." We had to pull expansiveness out of him, and it was exhausting.

So when did that change? I couldn't tell you. When did this full-sentence-talking-boy emerge? Dunno.

That night I asked my husband: "Have you noticed Jake almost always talks in full sentences these days?" And he had to stop and think about it, and then agreed with me that yes, he does, and no, he too has no idea exactly when that shifted.

And that's the maddening thing. There is no exactly. It's minutely incremental, like how sand dunes "walk" across a desert, a few inches a day. And you never notice the day-to-day movement until suddenly it's clear the landscape has altered irrevocably.

That's Jake.

He is also asserting himself in new and interesting ways...

When Ethan grabs the TV clicker as he sits down in the living room where Jake is in the middle of watching a show, Jake will now pipe up with: "Ethan, don't change the channel... I'm watching something!" 

When I spoke to him the other day and addressed him, as I often do, as "sweetheart" I got this response:  “Don’t call me sweetheart. My name is Jacob.” (This is probably an adaptation of a script from a TV show, book or movie that I just don't recognize, but it's so damn appropriate that I'm going to count it as amazing anyway.)

I don't know where all this is going, but I know it's a long way from where we've been. And for this next year,  I'm vowing to pay more attention on the way,

But I'll probably still be taken by surprise by Jake's changes. He's a sneaky one, that boy, growing and growing up, changing and evolving while I'm distracted and focused elsewhere for a moment.

I look at him and he's standing in place, admiring the flowers. I turn around and there he is, a whole square further down the path, smiling and waving.

And as long as he's forging ahead, I wouldn't have it any other way. Keep going Jake, keep going... leave me in the dust, please.

I'm also linking this post up to Shell's Pour Your Heart Out linky at Things I Can't Say

Looking for comments? To read or leave a comment, click on THIS post's title, or HERE, to bring you to the post's page view. Comments should appear below.

Monday, July 25, 2011

One Sip

My son Ethan?

Loves coffee. Yes. Coffee.

And he's 9. (OK, not even, but he'll be 9 in a few days, so I have to start thinking of him that way so I don't cry all over him and his twin brother Jake on their birthday, being SO not my babies anymore and all.)

I'm not a bad mother, don't turn me in. It's not like he's really drinking it, I don't pour him a big ol' steaming cup of Joe every morning. 

It's just... you know how whatever you're having, if it looks like you're really enjoying it, if it seems important to you? Your kids want it too. (Well at least the ones typical enough to notice such things.) They can become real pests about it.

Yeah, Ethan is like that. I give the lecture about some things being just for grownups, not good for kids, etc. but still, the lure of the "semi-forbidden-grown-up" thing is strongly at work here, too.

And the whole thing is my own damn fault.

It started out with me, like a fool, letting him have ONE sip, once...  I was thinking: stinking picky eater that he is, he'll hate the taste and that will be the end of it.


He LOVED it. (face palm)

Probably because I take mine light and sweet.

So now every time he is around when I'm drinking coffee - especially iced coffee? He wants a sip.

He begs, whines, wheedles and pleads for a sip.


And every now and then, for a special treat? I let him have one.

One sip.

And you know how nicely the other mommies at Starbucks look at me when I let him have one there, right? (Yes. Like there was a skull and crossbones on the cup I was offering to him.)

But the thing is, I can't over-emphasize how terrible coffee is for you, because he's likely to want to drink it some day. And also because Ethan has a logical mind, and will want to know why *I* am drinking poison on a daily basis. And he will try to get me to stop.

And that will never do.

Must. Have. Coffee.

So, really, how harmful is one occasional sip of milky coffee, considering the massive unknown load of environmental toxins our bodies are being bombarded with every day? (See, I can justify anything, it's one of my true talents.)

And anyway, he already drinks tea with me regularly. (Sit back in your seats, his is decaf.)

And like Jean-Luc Picard, we prefer Earl Grey, hot.

Note: This post was inspired by a post on "Is There Any Mommy Out There": Sip locusts. It is essentially an expansion of a comment I made on that wonderful post. Thanks, Stacey for being such a moving and inspiring writer. 

Looking for comments? To read or leave a comment, click on THIS post's title, or HERE, to bring you to the post's page view. Comments should appear below.

Sunday, July 24, 2011

Blog Gems has a Summer Home!

My lovely friend Jen who created the Blog Gems - Air Your Archives link-up is taking a break from blogging for the rest of the summer to focus her time and energy on her family. 

So I am taking over and babysitting her baby until Jen gets her blogging mojo back and jumps back into the game again (hopefully in the fall when the kids are back in school). While *I* may not have a summer home, at least Blog Gems does.

I now will be hosting this linky fortnightly (I LOVE that word! It means every other week, for you non-anglophiles.) starting with today.

Come! link up! Tell all your friends! I promised Jen it would be alive and well when she brings it back home to her blog The King and Eye. So don't make a liar out of me.

This is what Jen says about Blog Gems:
How many posts do you have languishing in your archives? Great posts that will never be dusted off and brought out to breathe again! Maybe you created fabulous content before you had lots of followers, or maybe you have been blogging for years and your current followers haven't seen your older material.

Blog Gems - Air Your Archives is a fortnightly linky list where we will give a prompt and you select a post from your archives that fits the prompt. You do not have to create content for the prompt, unless you want to. All you have to do is copy and paste the url of the post into the linky list. Voila, an old post gets a second shot!

To take part:

1. Follow MY blog for now (and Jen's blog once I hand her back the reins) to get future Blog Gem posting information and linkys.

2. Grab the Blog Gem button and place it on your sidebar (html code here). Putting the button on your blog is not a deal-breaker, some people just don't like doing it and I have no problem with that at all. What I will say is that something like this can't be successful without 'word of mouth' so I would appreciate if you could find another way to let people know that this is available and they are welcome to join in.

3. Enter your link.

4. Read and comment on the submissions of the two blogs posted before you on the linky list. (Please!)

5. Help spread the word by telling your blogging friends, either by tweeting this or blogging about your entry.

And here's what I have to add:

It's a wonderful chance to get fresh eyeballs on your great posts from the past.

The rule is that you're supposed to select a post from your archives that fits the prompt... but, being the generous, kind-hearted person that Jen is, it's a lenient rule. She states: "Broad interpretations of the prompt are encouraged so this could be a good chance to be creative!"

And, as we're in the middle of a horrific heat wave, this week's prompt is: Cool

Cool... take that literally or figuratively; temperature or attitude. Root around in your archives and find an old post that connects to the concept of "cool."

Ready? Good. Ladies and gentlemen, start your engines, aaaaaand link up!

Looking for comments? To read or leave a comment, click on THIS post's title, or HERE, to bring you to the post's page view. Comments should appear below.

Saturday, July 23, 2011

SNSS: Happy to Be in the Middle

Every week I tell you that *today's* SNSS guest is particularly wonderful or special. And I really mean it, because they all are (they're all special needs bloggers, after all). But TODAY? Wow!

Today I bring you Jen of The King and Eye (her personal blog) and Irish Autism Action, a community blog that Jen runs along with their other social media. 

Jen is the mother of three children, the middle of whom is on the autism spectrum. And, to quote her tag line, she writes about "family life with a dash of autism." Jen is also my second international SNSS guest, as she lives (and is involved in the autism community) in Ireland.

But also? Jen is my friend. I met her (and her mother) when she came to New York for a special trip last winter. I was a guest host of her Blog Gems link-up feature, and will be taking it over for her while she takes a break this summer.  

But enough of MY words about Jen, come read about her wonderful family in her own words, here:


Happy to Be in the Middle – by Jen

My name is Jen and I have three, fabulous, children. Firstborn is 9 years old, HRH (His Royal Highness) is 3 years old - with autism, and Her Cuteness is 2 years old. Having a special needs child in the family has never really been an issue for us because we don't know any different.

For my neurotypical children HRH 'just is who he is' and they have adjusted well. I blog often about HRH, the issues he faces and how he overcomes them. I don't often blog about my other children and how brilliant they are so I am delighted to have this opportunity to specifically write a post about my neurotypical children, the ‘special needs siblings.’

Firstborn, at 9, understands that HRH has difficulties and likes to be involved in any way he can. When HRH started a new school last January Firstborn visited the school to see where HRH sat, works and to meet the teachers. The school were very accommodating with this and it meant a lot to Firstborn.

We also occasionally, at Firstborns request, bring him to therapy appointments so that he can know the therapists and see what happens during therapy sessions. He likes to do 'work' with HRH so we tend to assign him his own personal task to work on with HRH (a small task).

This is all at his own request, so if he has a difficult day or wants some alone time then either myself or my husband will just pick it up. He worries about his little brother but also celebrates all of his achievements with gusto.

Her Cuteness, at 2, has no idea what autism is or that HRH has it. To her it is perfectly normal that he uses a PECS book and when she started using PECS at 12 months old we just went with it. It actually came in very handy because she could show us the pictures of what she wanted when she didn't have the words to express it and I think we avoided a lot of frustration tantrums because of PECS.

She is a bossy little girl. Luckily HRH loves her bossing him around and they have great fun together. Although there is a 16 month age gap between the two of them, developmentally they are very similar and I can see them encouraging each other.

Recently HRH showed an interest in being able to sing his alphabet and Her Cuteness followed. While she was doing this she discovered other nursery rhymes and HRH followed her with that interest.

Often I see Her Cuteness looking after HRH, particularly in the case of him not understanding a verbal instruction. She takes him by the hand and shows him. They do argue, mostly about turn taking and who gets to play with which toy. Not much different to any set of siblings!

The interesting thing is that Firstborn and Her Cuteness have a much different relationship. While both of them are very gentle and considerate (mostly) of HRH, when they get together the pair of them cause fireworks.

Her Cuteness regularly goes out of her way to annoy her eldest brother and said brother does 'big brother' things like saying 'oh, look, a spider' and laughing while she runs away screaming. There is a pair of them in it, I can't say which of them starts the fireworks, I just know how often I have to put an end to it! (Too often!)

It amazes me that each of my children has such a good grasp on where their siblings are and what they can handle. Their intuition leads them, they trust it and, mostly, get it right.

It may not always be like this. Things may change as they get older, I realize that, but I choose to enjoy what we have now rather than worry about things that haven't happened yet.

I would like to think, in 10 years time, I will still be able to say how close my children are to each other…… and that maybe the eldest and youngest will have put out their fireworks!


Jen, can I just say, for the record, how much I love your family? And I also love how your love for and deep knowledge of your children shines through in every word you write. I am honored to have had you here as my guest today.

OK, people, now that you've gotten to know them a little bit here today? Jump across the big pond and follow Jen home to her blog, The King and Eye.

Try this, her very first post, about the light-bulb moment when she realized her son was autistic, or this post listing 10 things she thinks HRH wants you to know about himself.  And do read this really, really funny one about a particular, um, kink in HRH's earliest language development. 

Jen is also (unlike me) a techno-gal. She does her own coding and even posted a tutorial about how to make your own custom favicon. That's how I learned to make mine. (Thanks, Jen!) 

You should know that Jen is taking a little break from blogging for the rest of the summer. This spring her family went through a crisis when HRH became extremely ill with a mystery disease that required a lengthy hospitalization. So Jen really needs to recharge and focus on her family right now. 

This means things will be very quiet on her blog for a bit. But that's OK, because her archives are a lovely place to root around in until she's ready to post again.

Also? You will certainly want to follow Jen on Twitter as her charming self @jencull, and also as @Irishautism, for news on that front.

And finally? Thank you, thank you, thank you, Jen, for being such a wonderful member of the blogging community, and most importantly, for being my friend.

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Friday, July 22, 2011


My errands this morning found me at the local drug/toy/stationary store, shopping for goodie-bag items for Ethan and Jacob's upcoming 9th birthday party.

Captain America Pez dispensers and Gogos Crazy Bones. (Because I know you want to know.)

I suppose I was feeling the weight of their near full nine years upon this earth when I climbed up the stairs to the toy floor, and right into the sight of a three year old boy entranced by the play area's Thomas train tables.

And I have to catch my breath. It all comes tumbling back. Here, now becomes here, then...

How many hours had I spent, mom-sized butt wedged into toddler-size seats, beside those magic rectangular islands of Sodor?

If I squint I can almost see my boys here again, their curls golden brown and blond, squabbling over possession of the best freight cars, the one James the Red Engine whose face has not been loved into oblivion. "Mine" yells Ethan, while Jake howls and growls like a wolf.

Sometimes the boys would even pull their own precious trains out of their pockets, carried forth out of our home on promise of safekeeping, unable to resist the allure of watching them travel over bridge, through tunnel, into the shed and back out again. Maybe take a wild spin on the turntable.

What? Has a train plummeted off the highest bridge, into the river? Oh, well, accidents happen. The greatest entertainment. And they provide Jacob with the opportunity to appropriately script: "He tried to apply the brakes, but it was too late!"

My boys are so big now, Ethan's train days many years behind him. It's like opening a forgotten door to watch this sweet little boy squealing in delight as Edward, once more, rounds the bend.

Jacob still revisits the Island of Sodor from time to time, as he spirals back again - with greater understanding - through old delights. Yet he, too, is marching (though, through the gift of autism, infinitely more slowly) away from the simple, little boy pleasures of trains and train tables.

And stories that always end fortunately, with no one getting hurt.

Mama's Losin' It
I am linking up this post to Mama Kat's writers workshop.  It was inspired by the prompt "The simple things..."

I'm also linking this post up to Maxabella's I'm grateful for... because I am infinitely grateful for my boys that were, and my boys that are.

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Thursday, July 21, 2011

NOT a BlogHer primer - or - Don't take advice from ME!

OK, so this IS kind of a BlogHer primer, but I'm warning you: don't be relying on me for practical advice!*  

My good bloggy friend Alexandra (The Empress) is going to be one of my roomies at BlogHer. (Yay!) As it's her very first conference, she's feeling a bit nervous and anxious (though, of course in a very funny way on her blog).

Since she knows I was at BlogHer last year, she has asked me for advice & reassurance. Ruh, roh.

Now, while I rarely lecture here on my blog, if you know me at all in "real life," you'll know I'm a big old know-it-all. I love, love, LOVE to give advice, often unasked for, and whether I have actual expertise in the matter or not.

Yes, I really have to bite my tongue to make myself stop when I sense my generously shared wisdom is unwelcome. (You should see me around an autistic kid whose parents are clearly clueless and clearly do NOT want to know. I actually twitch from the effort to keep my big mouth shut.)

And this time I have been ASKED for advice, whoopeeee! Permission to blather on granted! And so instead of just sending my wonderful friend an e-mail (which I also have, since it seemed impolite to make her wait) I have decide to share my garnered wisdom with all of lucky you.

I mean, everyone who is anyone in the bloggosphere is offering their take on how to prepare for BlogHer to the nervous newbie, and so I figure I'd better follow suit. It's pretty much REQUIRED, at this point. And I always do as I'm told. (snort)

The problem here is: I don't really know how to properly advise a BlogHer newbie, having never *quite* been in those shoes myself.

For you see, even though last year was my first BlogHer ever, and even though I'd only been blogging 6 short months when I went? I wasn't actually a nervous newbie. Not at all, not by a long shot. (In fact I wrote a post about THAT last year & you can read it here: Look, Ma, I'm going to BlogHer)

In a nutshell, I am so un-nervous about these things because in my prior-to-parenting, prior-to-blogging life? I was in the media business (film/tv/video/music publishing) and went to and also worked at a lot of conferences.

So my advice is probably useless to you if you are quaking in your boots about being at a conference with 2,950 really nice women who want to meet and connect with you. (And, yes, about 50 competitive, nasty, narcissistic jerks.)

My best advice: ignore the 50 jerks. That's really all you have to do, and you'll have a great time.

My other main advice to you, even if you've never been to conference before in your life is: Don't Panic.

Also (get ready for it): Be friendly. Make plans, but be receptive to serendipity.

That last bit is the big one. (And kind of covers everything.)

I showed up at the Toronto film festival not knowing a soul, and ended up at a wild party with a bunch of Icelandic filmmakers, at dinner with Agnes Varda, at an amazing event at the Shoe Museum...  all because I talked to the people who stood next to me on lines, and said "yes" to everyone who asked if I wanted to come with them to do something.

And THAT was at a snooty film festival filled with narcissistic posers.

And THIS? Is BlogHer we're talking about... basically just a big ol' family reunion! These people are OUR TRIBE, remember?

Actually it's even better than a family reunion because no one has generations-old grudges they are holding, and hidden agendas, and they don't care who mother always favored or who was seated at a "bad table" at your cousin Susie's wedding.

No one has come to judge you or make fun of your shoes. Everyone wants to connect, to revel in being with others who understand why we feel compelled to turn our lives into prose and blast it out into the bloggosphere. We are family! (And how many more cliche catch phrases from books, songs & TV can I slip into this one post?  Let me work on it.)

Also? I know some of you are nervous about the travel itself, having never flown alone into a city you don't know.

OK, you may not have done THAT, but you have been in an airport and flown before with your family, right? OK, same thing, but this time there's no one else's nose you need to wipe - a win!

If no to that one... well, you've seen airports in the movies and TV, right?  And unlike in those shows, no one is trying to hunt you down and shoot you, honest.

Also? Airplanes?  Just buses with staler air; buses that fly in the sky. And airports? Train stations with tighter security, more expensive food, and MUCH better shopping. Really. Mostly, they are BORING and you will spend much time sitting around in them, so bring a good book or two.

And sit right by your gate from an hour before departure on. Really.

Because I *might* have once been so engrossed by a book I was reading in a quiet little spot a bit far away from that pesky, noisy gate that I nearly missed my fight, had to beg them to NOT shut the gangway door in my face.

And finally, because SOMEONE should learn from my past mistakes (and it's certainly not going to be me):

DO remember to pack underwear.

And? Good Luck!

* If your really want some wonderful, practical help-you-plan-for-your-first-BlogHer advice? Or even just someone else's take on the whole thing? Go read these great posts from these wonderful bloggers:

Try BlogHer Bound: San Diego, Here We Come from Mo of One Ping Only or this funny one, How to Prepare for BlogHer from Sherri of Old Tweener. Gigi from Kludgy Mom offers this advice for quelling your anxiety: Get Over It (and have fun).

And if you're stressing over whether or not private party invites have been arriving in your inbox? Read this: The Private Party Predicament at BlogHer at 5 Minutes for Mom.

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Wednesday, July 20, 2011

Wordless Wednesday: Beach Day

Really I've been talking about it for days, did you expect pictures of anything else?

I think I may ACTUALLY go wordless here today, let the pictures do the talking. But, um, they're allowed to have CAPTIONS, right? Goooood:

A boat! On a boat to the beach!
Nearly there...
Ocean: spotted!
Yes, it was one of those *perfect* beach days.
After our big swim, Jake spent a lot of time in the sand.
Jake loves him some sand. (SPD)
Ethan, on the other hand, was quite happy in the foamy shallows,
hanging out with his friend,
and helping some kids build a sea wall.
Anyone ever doubt me when I tell them Jake is a sensory seeker? Didn't think so.
 Jake made it his business to get as sandy as possible.
Very sandy.
Very, very, very sandy.
Sandy but happy. Win.

I’m linking up to Wordless / Wordful Wednesdays all OVER the place... at Angry Julie Monday... at 5 Minutes for Mom... at live and love...out loud... at Dagmar*s momsense... at Parenting by Dummies.

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Tuesday, July 19, 2011


We have gone to the beach, my children and I, finally this summer, in mid July.

Our toes slide past the shoreline’s tickling foam fingers with hours and hours of traveled anticipation at our backs pushing us further and further into the crashing waves.

The first slap of ocean upon sun warmed flesh a shock delicious and bracing, and as familiar as breathing to me, thrown suddenly way back to my beach-washed childhood.

They want to go deep, my sons. Beyond the breakers, with me.

"Swim, mommy! I want to swim!" Jacob has been chanting over and over, impatient through the processes of establishing our beachhead; of blankets unfurled and corner weighted, towels piled at the ready, glasses securely stowed away.

He will not be denied.

We stand thigh deep in the churning foam as I test the ocean’s resolve to push us under, pull us out. The waves are dramatic but not demonic, the undertow manageable. It’s a go.

This first time I must take them out together, as neither will countenance being left behind, shore-locked and waiting.

When I was their age I was out in the deep on my own, body surfing the breaking waves as my father had taught me.  But these are city boys, our forays to ocean beaches few and far between. Once or twice a summer season. (Last year not at all, to my heart's sorrow.)

And I, after an urban beginning, was raised an Island girl, the south shore beaches my constant summer's terrain.

It was a casual thing for our family. Once a week, sometimes more, we'd toss our towels and a couple of peanut butter & jelly sandwiches into a bag and we’d be off to the beach. And then as a teenager, I would venture alone with friends on the Jones Beach bus.

With my sons, however, it's an outing, a sojourn, planned, scheduled, only attempted when the stars align and circumstances are just right. Like last Sunday.

They want to run headlong into the surf but I hold them back, an old hand at this game.

“Do you want to get trashed by the waves?” I ask them.

“Noooo!” they howl, seeking to be spared this indignity.

“Then wait for my signal, move when I move, and fast!” I instruct.

I stand looking seaward, study the waves as they collapse upon the many small sandbars that carpet the ocean floor here, engendering a complex pattern, difficult to properly time our approach.

I watch the ebb and the flow, making sense of what looks like chaos, and slowly the patterns emerge. There are occasional rogue waves coming in from the right, but basically these big waves come on: one, two, three, and then a little lull, one, two, three and then the lull, the outgoing wave canceling out the incoming one, creating calm, the appearance of stasis on the surface when below there is a swirling pas de deux.

“Now!” I yell, hoping I‘ve got it, that the wave I see beginning to swell out beyond the red ball buoy is going to be small, shallow, cresting once we are well beyond it. And indeed it is.

“Jump” I shout as the wave passes, rising us up with it, nowhere near ready to crash and crush.

(Yes, I’ve called it right.)

We bob and sway with the tide. Our faces split open in joy. You wouldn’t know which twin is autistic out here in the deep, both boys happily treading water, calmly following my instructions.

“Over, over!” I yell, and we rise up together, laughing into the spray. With Ethan tightly gripping my right hand and Jake my left, I am sincerely hoping my nose does not start to itch.

Occasionally a wave rises up and up, curls over us ominously, and our strategy changes. “Under!” I command and we dive below, surfacing to the screams of those being crashed upon, further ashore.

A double wave catches us by surprise, causing me to drop right into its crest, expecting a lull. As I snort some ocean water, I feel my feet starting to cramp and realize I have hit the point where my body is tiring of this constantly alert state. Time to head in.

The boys howl in protest, would stay out here all day, rising and falling in the swells with Mom. But I am the grown-up here, know when I am reaching my limits.

“It’s not safe anymore,” I tell them, “I'm getting too tired to keep you safe.”

“Nooooo!” they wail. But I am the Mom.

I turn my body toward the shore, but my head and gaze swivel back to watch once again the patterning of the waves. I want us to travel with them, to use the waves’ energy to bolster our flagging reserves, riding them shoreward.

I am trying to describe my process to Ethan, trying to teach, to pass on my knowledge; but this is hard, making explicit what is inside me mostly a feeling.

There are so many variables, chaos theory in action. There is my mind, calculating, looking at the swells: how high will they go, how fast are they traveling, how long it has been since the wave before, how fast it is being chased by the next, when and where and how large is the wave returning from shore to meet it?

But what is happening in the ocean at any moment is more than the sum of these parts. There is a gestalt to it, a knowing of the ocean, a sensing of her mood.

I can’t even say how I know what I know, but I know it. I feel it.

I have spent hours, days, years in the ocean and been trashed maybe thrice. Not in years.

And so when I yell to the boys “NOW! Move with THIS wave, let it carry you in!” I know it HAS to be this one; that hesitation will bring disaster, our timing off, the pattern all wrong and a wave will crash at our backs before we are far enough in, possibly throw us down, pull us under into a total sand-face-mash-up.

Not the end of the world, these waves too gentle for real damage; but still, a scary incident, a glimpse into the dark side of the ocean’s magic that I am not ready to invite yet into their sweet lives.

But lo, the boys listen, they move with me and the waves, let themselves be carried in.

And as our feet hit the sand we run, slogging fast towards shore. So the waves catch up with us too low to pull us under, a sandy tickling caress only.

We splash around in the shallows for a while, not quite ready to leave the salty sea. And as we drop onto the sand happily spent, let the receding tide tickle our feet, we look out at the noisy ocean and laugh. How we laugh.

They like to go deep, my sons.

This post was inspired by a prompt at The Red Dress Club. This week's RemembeRED assignment was to write about a time that rhythm, or a lack thereof, played a role in your life. And don’t use the word “rhythm.”
Please click on the button above, go to the link-up and read the other wonderful posts you'll find there.

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Monday, July 18, 2011

A little time with Ethan

Jake’s been taking center stage in the blog for a while now (what with the autism and all), and Ethan wants me to remind you folks that he exists, too.

So here are a few more snippets of life with Ethan. Enjoy him. (I do.)

Ethan, Summer 2011
The other night Ethan complained to me "My life is boring right now."

"What? Why?" I asked, slightly stunned, what with the fun camp and many friends and all.

"Well, there's nothing going on in my life. I kind of like Gogos, but not THAT much... There’s nothing I'm REALLY into right now”

Ahhhh, I see, life without an overriding obsession feels… different... lesser.

I suggested to him that maybe it was time to take up a real life hobby that could grow with him - like a musical instrument, instead of him outgrowing - like all his Japanimation toy obsessions: Power Rangers, Bakugan, Pokemon, Beyblades… and now Gogos Crazy Bones…

"No, Mom, I just need a new THING to be into."

Well, at least it's not girls. Yet.

(Also, just so you know, this conversation took place, of course, while he was on the toilet, just before bedtime. Once a bathroom conversationalist, always a bathroom conversationalist.)


At bedtime the other night Ethan got the giggles -- this is, unfortunately, a not uncommon occurrence. He gets these funny ideas, and well, they make him laugh. Not the most conducive to sleep, now, is that? 

Ethan. My budding insomniac night owl child.  (Sigh.)

So, this time the “funny thought” ran along the lines of “wouldn’t it be soooo funny to have a boy and name him Muriel? Or Betsy, or Isabel.” Somehow naming of the inappropriate variety is a big theme for Ethan, and a frequent source of mirth.  (As all gender reversals are, too, come to think of it.)

He was going on and on, suggesting girlier and girlier names as possible candidates for “Worst. Boy. Name. Ever.” I was trying to put the kibosh on this, to shush him up, both to help him calm down enough to sleep and so as not to wake Jacob with his chortling.

But then I couldn’t help myself.

“Well, you know there’s that famous song about A Boy Named Sue…”

Ethan didn’t. He wanted to know all about it.

I told him a tiny bit about Johnny Cash and the song; just a tease, really, enough to intrigue him. And then I told him I would find it on You Tube for him the next day and play it for him ONLY if he quieted down and went to sleep right away.

It worked.

The next day, when he came home from camp, I had it all cued up, waiting for him, keeping my word. I played it; we got to the end.

And his reaction?

"That’s just WEIRD, mom."

And then the thousand questions, about the song... "Why did he leave his family... and why does he want his son to be a fighter... and why did he want to kill his Dad... and why would ANYBODY name a boy Sue and... ?"

And the singer... "Why is he the man in black... and why is he playing in a prison... and why is his voice so low and... ?"

And a part of me wanted to say "It's just a song, Ethan."

Except it isn't. It's a part of our heritage now, our mythic landscape.

And Johnny is one of the Great Beings who have walked among us (although of course he was also just a man; someone's son, father, husband, brother, grandfather).

And you know who wrote it, right?


Last night I attempted to explain the mechanics of humor to Ethan. All about how to tell a joke and what makes a joke funny or not. Not easy stuff to quantify.

It started with a discussion of swimming at camp, he talked about learning the backstroke, which led to my telling him that old chestnut of a joke from the classic lexicon:

"Waiter what’s this fly doing in my soup?"

“The backstroke, sir.”

(cue rimshot)

He then wanted to hear more waiter jokes – so I told him the “Who wanted the clean glass?” joke and then started in on other “classic” jokes, like the “... walks into a bar" formulation.

Silly me, after much pleading I finally told him my favorite walks-into-a-bar joke. Which, unfortunately involves a certain knowledge of existential philosophy. It begins "Descartes walks into a bar..."*

Have you ever tried explaining existentialism to a nearly 9 year old?  (Yeah, me neither.)

And then we ended up talking about how certain variations on the chicken-crossing-the-road are funny and some are not.  And why.

When I said “and then, when you deliver the punch line, you have to drop it in just right”? He thought that was hysterical.

He had never heard the term and got very distracted and entertained by the idea of ACTUALLY punching someone while telling a joke.


I guess he is still a not-yet-quite-nine year-old boy after all.


And those are all the tales of Ethan I have to tell... today.

You know there will be more soon.

Because Ethan keeps being Ethan.

And that?

Is entertainment.

*Oh, you want to hear the Descartes joke? Really? OK. It's short, sweet, a little absurd, definitely goofy (and I love it):

Descartes walks into a bar.

Pulls up a stool, sits down.

He starts chatting with the other folks at the bar.

The bartender is getting impatient, asks him: "So, buddy, are you going to order a drink?"

Descartes answers: "I think not."

And promptly disappears.

(cue rimshot)

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