Jakey Vitamins

The thing is, if every life is full of ups and downs, life with special needs children is just... more so.

In every way.

There are so many aspects to it that drag me down, made me cry, bring me to my knees. So it's important to look for, focus on, and magnify the moments of light and buoyancy; the little things that lift me up, keep me afloat, allow me to just get on with it. Because I would rather laugh than cry, any day.

This morning I had one of those lightening moments. Not a big laugh-out-loud funny, more on the order of a tiny rise of the corners of my mouth and heart. But all those tiny bubbles? Aren't they what make champagne so delightful?

As I was rushing encouraging Jake through his usual get-ready-for-school routine this morning, I was reminded that my eight year-old son, my Jacob? He has a mob name.

He's Jakey Vitamins, and don't mess with him.

This came about because of the unique configuration of our small apartment: we don't have a dining room and we don't have an eat-in kitchen. The dining table is in a corner of our living room, the corner farthest away from the kitchen, which is typical NYC: a long, narrow galley.

Jacob is a "mid-high functioning" kid on the autism spectrum. What that translates into is that he is capable of being independent in his morning routine. Sort of.

Meaning: with LOTS of coaching and reminders he can do most things for himself. With LOTS of coaching, reminders and nudging to stay focused, that is. And a quick mom-check that his underwear is not on backwards. Again.

Also, in the mornings, time is of the essence. Jake gets up at 6:00, his bus comes at 6:45. No lollygagging allowed. With the kitchen and the dining table so distant, and with Jake & Ethan's lunches to be packed and Ethan's breakfast to be made while Jake is eating his breakfast, the coaching inevitably needs to happen somewhat long distance.

Translation: Me, yelling from the kitchen towards the living room: "Jakey, Pants!" "Jake - TWO shoes!" "Jacob! EAT!"  This short form is based on the theory that reminders should be kept simple: name plus one word - verb or noun - that best jogs the memory and focuses the brain.

One particular morning my husband was actually up early and at the computer in the alcove off the kitchen (aka his office) while this was going on. After about my third bellow of "Jakey! Vitamins!" he chimed in: "You know honey, I think that's his mob name."

Me (distracted by toaster oven and microwave timers going off simultaneously): "What?!?!?"

Husband: "When you said just now, I thought -- Hey that sounds like a typical mob nickname, like 'Tony Bagels' or 'Vinny Carwash.'  'Jakey Vitamins' -- it's got as nice ring to it, don't you think?"

And thus Jakey Vitamins, my son's mobbed-up alter ego was born. 

And so now when I call that out to him - "Jakey! Vitamins!" - (many, many, many times each morning) I play this back in my mind and makes me smile; helps me to not be so annoyed.

Jakey Vitamins. Don't mess with him. Or he and his gang -- Blue Bear, Curious George and SpongeBob SquarePants -- will have to come show you who's boss (of the big hugs).

@@@@@@@

Also, if you have another 3 minutes? (And even if you don't, you should *make* 3 minutes free for this.)  Click on over to Stark Raving, Mad, Mommy, and read today's post:  Top Ten Things You Should (and Shouldn't) Say to The Parent of an Autistic Child.

She hits the nail on the head in that perfect combination of laughter and "Ouch!"

Also? I'm now linking up this post to Maxabella's

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.

I've Got Stones

Gall Stones, that is.

What?  You thought I was talking about my Mom-balls again?

Yeah, I've got those, too.  Just try to take away a vital service from my autistic son, Jacob.  Mess with him and you will see my giant huevos come out, big time.

I mean, even though my *actual* eggs are kind of over-cooked at this point (see my last post), my metaphorical ones?  My "don't mess with my family" ones?

Outsize and ready for action.

But about that other thing?  Yeah, I'd really like to pretend this isn't happening.

But doubling over in slicing, cramped pain and then making a mad dash to the women's room to gag and dry heave for 10 minutes during my son's basketball practice on Saturday sorta makes that impossible.

I cannot say enough about how happy I am to have the good fortune to have actual medical professionals in my family, both natal and the machatunim.  (That's Yiddish for the whole {damned} family you marry into - you know, the in-laws.)

I had already self diagnosed via the friendly internet on Saturday night.  When I was finally able to stop moaning and sit upright, that is.

But you know?  The internet?  Scary place to do medical research.  Reminds me of that old Nicole Hollander cartoon, the one where Sylvia is reading a book called "Infectious Diseases."  As her daughter warns her to put the book down, she yells out "Oh my god, I've got anthrax!"

In spite of the chance to just completely terrify myself, I kept a mostly level head.

But the problem with hot-knife style searing pain of mind bending proportions in the area of one's major organs?  Hard to believe it's no biggie, not connected to a serious condition requiring immediate medical attention.

But a nice chat with my lovely ER doc cousin, Jessie, in Vermont reassured me that had I come into her ER, she would have been all "Crap! Why is this person in my ER?  It's just a gall bladder attack, nothing dangerous. I had to wake up from my nap for THIS?" (She often works the overnight shift.)

She told me to see my doctor on Monday, went over the warning signs that should send me rushing to the ER for real, and gave me advice for how to get myself comfortable in the meantime (antacid, Tylenol, rest, duh).

And the next day I felt mostly better, which was a mighty good thing, it being the Sunday of my husband's family's annual Big Chanukkah Party.  (I know, not technically Chanukkah anymore.  But?  Shhhhhhh.  It was so early this year.)

What?  You want to see pictures of that?  OK here's a few:

Lighting Grandma Blanche's menorah

Presents Galore!

Grandma Sylvia got a zhu zhu pet

And at this bash?  Yes, indeed, I sidled up to Danny's cousin who happens to be a G.I. with that "you are about to be cornered by a relative with a medical question" look on my face, and he did not back off and disappear, which I took to be the go-ahead sign.  (If you're confused here?  Folks, we're Jewish.  To us "G.I." is short for Gastro-Intestinal as in a doctor's specialist degree, NOT Government Issue as in "G.I. Joe".  Please!)

So I asked cousin David, "Do you do Gall Bladder?"  And he gestured for me to continue.

I described my symptoms, and when I got to the part about the pain finally localizing in the upper right quadrant of my abdomen and then radiating to my back under my shoulder blade, he nodded.  Then he poked at a spot and I yelped and he said to call his office at 8:30 the next morning and they'd get me in right away.

Oh yes, I married into the right family!

So all this is how, yesterday, I came to have my first complete and thorough physical exam in... maybe 10 years?

The problem with being essentially healthy and taking care of multiple elderly parents and young kids with all sorts of issues is that you can neglect your own health big time.  (I *might* have done that.)

Until there's a big wake-up call.  Like, oh, feeling like you're being sliced in half by a ninja out of the clear blue at 2:45 on a Saturday afternoon while your autistic son is attempting to play basketball.

What?  You want to know how the basketball is going?

Yes, I did share my excitement about it, and planned to report back right away.   But life got... busy, you know?

Briefly: it's going well-ish.  (A full post account is coming up soon, I sort-of promise.)  Here, look at some cute pictures (sorry about the odd color, there's weird yellow lights in that gym):

One excited boy

Playing basketball, sort of

So, back to my foray into all things medical yesterday... having been a basically healthy person for 50 years (and believe me, I know how blessedly lucky I am about this, am grateful & do not take it for granted) my experience with medical procedures has been mostly on the sidelines.

Let me tell you, there was a more than slightly surreal quality to be personally undergoing the same diagnostic procedures that I had sat through countless times as the support person for a parent or friend.

Like deja-vu with a side-step.  Like in those dreams when your point of view flashes back and forth between a first and third person perspective, leaving you wondering if you are watching or experiencing the events at hand.

To be the one in the ugly, ill-fitting gown on the table myself?  Very, very weird.

What?  You want pictures of that, too?  Well, here's me waiting for someone to come into the room and do something to me:  

Beige is so NOT my color

So I've now had my first echocardiogram, folks.  And you young people with healthy hearts who have never had to care for someone with cardiac troubles will not get what a big deal this is.  But if you're on my side of the fence, you will understand the thrill, and why I'm bragging:

My ejection fraction?  Was terrific.  (The "ejection fraction" is a measurement of the heart's efficiency at pumping blood, and is severely compromised in Aortic Stenosis, the condition that did my father in.)

I jumped with joy.  (Well, I would have if I weren't laying on a table covered in yucky ultrasound goop.) 

Considering that I am essentially allergic to exercise?   I have no right to have a heart as healthy as mine appears to be.  And I am NOT going to take this for granted.  I am going to thank my lucky stars and work from here on outward to not let this good start turn sour through inactivity and complacency.

I am a 50 year old with young children. I need to do all I can to ensure I am here to care for them through their formative years, to do all that is within my power to not abandon them too young.  (Please hold me to this.  Yell at me if I don't start to take better care of myself in the future.)

I am guessing I have my love of dancing to thank for the positive state of things.  Those years of my late teens through mid-twenties when I went out dancing with wild abandon two or three nights a week.

And the way I danced?  Way aerobic.  I would work up quite a sweat.  Hell, I would often sweat completely through and thoroughly soak my clothes.   Looking back it's a wonder anyone ever dared go home with me afterward, sweatball that I was.

Although it must have helped that, as an old boyfriend put it, I "danced like a girl who likes to fuck."  Ahem.  Guess I wasn't afraid to move my hips.

Sigh.  It's nice thinking about a time when my body was more about pleasure than pain.

But getting back to the icky medical stuff.  I ended my day at the imaging center I had taken my father to many a time before.  Once again, the odd disconnect of shifted perspective.

"You've been a patient here before?"  The receptionist asked the question as a not-question, rhetorical. Clearly I looked familiar.  She thought I was a returner, a repeat customer.

"No" I answer.  Then, because she has raised her eyebrow sceptically I start to question it myself.  "I don't think so..." I stammeringly add, "I've been here so many times, but I'm pretty sure that it was always to bring my father in."

"Well, let's check, then" she says, inputting my statistics into the computer, which spits back... nothing. First timer.  Fill out the thousand forms and bring back the clipboard.

The technician is friendly, chatty, and I don't mind.  Gowned and gelled yet again, I am lying on the table when she swings the monitor around to show me: a solid white almond shaped nugget in the black hole that is my ultrasound gall bladder.  "Stone" she says.

Well, at least I wasn't imagining things.

"Is it a big one?" I ask, watching this thing taking up a good quarter of my gall bladder float around like an jumbo olive in a small martini glass.

"Oh, yeah, I would say that. The good thing is, it's too big to pass through the duct."

"That's a good thing?"

"Yeah, better than the granules, they really hurt going through."

OK, I'm happy to just take her word on that.

So now we wait on the blood-work, schedule another test in a few days (they're going to make my blood a teensy bit radioactive), and then?   Review the findings and evaluate my options.

Apparently, wave a magic wand and make it all go away?  Not among them.  Damn!

I may have a date with a laproscopic surgeon in my near future.  We may wait and see.

And if I do end up having my Gall Bladder removed?  Here's to hoping the guy doing it looks just like Weird Al Yankovic in his classic "Like a Surgeon" video.

Because I want to go under the knife laughing.

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Laughing beats the alternative

This morning I had coffee with a friend after we dropped our kids off at school.  I should have gone right home and done the 10,000 things on my un-done to-do list, but this had been one of those mornings.

Up too late followed by up too early.  My morning Twitter stream reflected this:

 

So, clearly, I needed the coffee and the friendship to get my morning turned around.

My friend, in turn, really needed to talk to someone about another friendship of hers which was hitting a rough patch. And, somehow, of all the people in her life, I am the one who has a direct yet separate connection to this other person, will understand where her frustrations are coming from, and also why she values this friend so deeply.  So we talked for a while, and strategized, and sighed big sighs.  Because this friendship stuff?  While wonderful?  Can also be really hard.

And then, this morning, I started to talk about Jacob and how he's doing.  And for some reason, this morning, something gathered momentum and came together in my brain that I had never let coalesce before, and I was crying and blurting out my fears for Jacob's future.

At this point, although things are far from certain, there is growing in me the gnawing fear that Jake will never be able to live completely independently, will always need some sort of care, a custodian to watch out for him for the rest of his life.  And that shit just tears me apart.

Because at ages 4, 5, 6?  The future is wide open.  We were still thinking we might find the magic hat trick that would rapidly pull Jacob together.   Not a "cure", not a miracle; we were under no illusions that Jake will suddenly fall off the autism spectrum and become "normal" (whatever THAT is).  But some kids I had known since Jake was little, who seemed much more messed up than he was then, have had these rapid turnarounds where they are now merely quirky and odd.  They are now kids who are socially "off" but still in the realm of regular.

They can go into regular classrooms with a bit of help, they are now like the kids we called "nerds" back in my day.  But they will clearly be able to navigate some sort of life for themselves as adults, with jobs (likely in the computer industry).  They will be part of the growing high-functioning Autism/Aspergers community; they will have their own place to fit in.

Jacob on the other hand?  At eight?  Is a lovely, loving boy, making slow, gradual, steady progress.  He is a boy who can talk, but not yet carry on a real conversation.   A boy who still prefers to meow, and growl; who struggles to find the right words.

Jacob is still so often and easily baffled by the world and the expectations of others in it.   And to learn and stay focused?  He needs a lot of support.  Someone right at his elbow keeping his attention on where it needs to be.  And that's not changing much.  And I don't know if it ever will.   I hope so, but I just don't know.

And I think in how few years he will be be a big boy, a teenager, an adult.  Blink, blink.  And I am afraid.  And I cried.

And then, because we so needed to, we laughed until we snorted our lattes out our noses.

I had pulled out my Droid and showed my friend the website I had found last night, that one that had my husband calling out from the other room wondering if I were all right or having an attack of some sort.

The website is called Damn You Auto Correct!  and it's a "reality" humor site, like Sh*t My Kids Ruined and Cake Wrecks.  In this case, people copy and send in texted conversations that have gone horribly wrong because the typing auto-correct feature on iPhones (and other devices like them) has made a baaad, baaad guess and changed an intended word or phrase into something... more interesting.

And often?  Rather obscene.  Or disgusting, or humiliating, or disturbing.

But always?  Utterly hilarious.

Latte snorting hilarious.  Hyena laugh hilarious.  Give yourself the hiccups hilarious.  OK, you get my point.

The funniest are (of course) the filthiest, and I'm not going to share those with you here, keeping some small semblance of decorum on this blog.  But I'm notifying you they are there, don't go there if you don't want to see that.  But if you do?  Please go and snort away.

Also?  Do not be drinking anything when you go to this site.  You have been warned.  I will NOT be held responsible for your messed up computer/smartphone/iPad/husband if you spit-take all over it/him.

Here are a few choice examples that had my friend and I sprawled across the table trying to compose ourselves and happily ignoring the questioning stares of the other coffee shop patrons as we brayed away and used up all our napkins wiping off the laughter tears:

Or this one:

I like the twist in this one:

OK, this is truly 8 year-old boy humor.  But also?  Funny.

And I thought it was bad when my phone turns "Ethan" into "Ethanol":

Here's one that's actually completely clean, yet surprisingly still funny:

But, finally, I think this one is truly my favorite:

See?  So the next time you are getting all scowly at life?  Go there and gleefully waste a few minutes. It will cheer you right up.  Especially if you're also having coffee with a good friend.