Fired for Sure

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

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

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

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

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

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

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

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

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

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

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

Picures and Stories

Jake, on the boat to Fire Island

There are pictures and there are stories.

A picture is a frozen moment in time. How things looked for a fraction of a second, over there, from here. And the story that goes with the picture, well, a story is another thing altogether.

There is the story under the story. Beyond the story. On the other side of the story. There is what went on before, what happened next.

I took this picture last week, when I took a day off from dealing with the dismantling of my mother's life and apartment, the dispossessing her of her things, to spend a day at the beach with my sons.

This move couldn't possibly have come at a worse time: the dog days of summer when the kids have no school, no camp and no friends around to entertain them; when everyone who is capable of it has gotten out of dodge. But here I was, trapped, sitting in an apartment in the City, sifting through every last bit of my parents' life together, downsizing my mother into a few boxes.

But that's neither here nor there, one bit of the backstory of this photo, which has so many backstories, so many threads all woven together to create this one image.

The moment is this: I'm on the boat to Fire Island with my two sons, a friend, and her twin boys, who are friends of Ethan's and have gone to camp with him this summer.

Day-tripping, we have taken the subway to the train to the taxi to the boat. But arrived with short moments to spare before it takes off, thus the desired "top deck" outdoor seats are all occupied and we are relegated to the likewise nearly full benches below decks.

Jake's got the window seat and he's loving it. I take this photo. Instagram it, and send it out over Twitter and Facebook.

Friends chime in: "Have a lovely day at the beach!"

That was my intention, a laid-back day of sand and sun and ocean and beach town. A one day mini-vacation in the midst of so much that is sad drudgery and emotional quicksand in my life right now. And the boys were to have "Fun Mommy" back for a day.

But that's not how the gods of autism saw it.

Because about ten minutes after this photo was taken?

Jacob stuck his head just a little further out the window... and the sharp wind blew his hat sheer off his head, tumbling it in the air, plummeting into the ocean below and increasingly far behind us.

And Jacob? He howled. He screamed. He beat the bench with his fists. He threw himself down on the floor of the boat and carried on an autistic meltdown to beat all autistic meltdowns. On a packed boat.

His grandfather was a Cantor. That must be where he got the lungs.

"My hat! I want my orange hat! I want my hat back!"

I heard this, well, I can't say "non-stop," because he did, eventually, stop for short whiles before working up to full steam again, but I heard this near continuously for the next six hours. And then regularly, with slightly longer breaks, for the next six after that. (And I am still hearing the occasional "What happened to my hat?" today, five days on.)

The full-bore screaming tamped down after the first hour or so, but the sporadic sobbing continued for the rest of the day. Along with demands that we go GET. MY. HAT. BACK!

Jake doesn't melt down often, but when he does, it's a wonder to behold.

I was really not fond of the stares. But didn't have the time or energy to focus on strangers. My boy was in distress, miserable and out of control. And I had to protect him. And help him (as best I could, but good lord my best was not good enough). And oh my god yes I have another kid, too, and thank god my friend just whisked him away with her two sons, and we met up with them an hour or so later when the worst of the storm had passed.

No mini-vacation. No fun mommy.

Just barely-holding-her-shit-together-mommy, once again.

And so it goes.

But the picture is lovely.

And all that it suggests.

The day that might have been.

But that would be a different story.

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

To Heaven and Hell in a day

Ethan & Jake in the Mist Zone

Today was the last day of Jacob's two week break between the end of school-school and the beginning of camp-school (what we call summer school around here so it can feel more like what Ethan does which is capital "C" Camp).

I had planned on having it be a very magical "Mom and me" time for him with special trips and activities, but then things with MY Mom went South and well, I have barely given my poor boy the time of day. Our "big trips" have been to go visit my Mom, first in the hospital and then in the Long Island rehab center.

Jacob doesn't mind of course, he loves to see his Grandma, and in fact, talks about her all the time right now, asks to see pictures of her from our trips. "Let me see Grandma sick" he requests, scrolling through my iPhone for all the recent images of her.

Today though, being the last of the last, I was planning something special. That is until a very loud thunderstorm woke him up irreparably at 5:05 this morning. With Jake out of school and Ethan's camp sporting a 9:30 start time, that meant that he and therefore *I* was up a whopping THREE hours before expected.

And me, seriously under-slept at this point means seriously cranky and no fun at all.

I was seriously cranky and no fun at all.

So instead of a day at a museum and playground, Jake had a day in front of the TV at his drawing table. He got to watch a whole Batman the Animated Series DVD and go though about a quarter ream of paper. He was perfectly happy.

I felt like a crappy parent, but what else is new these days.

We took an exciting trip across town to pick up some medication samples from a doctor for a drug that otherwise costs upwards of $175 a month on our crappy insurance plan, and then exciting trip back to the West Side in time to pick Ethan up from Camp.

It was HOT in New York City today, one of those real deadly summer scorchers we all dread. After pick-up there was a resounding call for lemon ices from the camp canteen so we indulged.

And right near the canteen and shaded sitting area was the "mist zone" - a misty sprinkler you can run through (or stand in) to cool down considerably. It was running full blast today.

Now, in the past, Jacob has had considerable difficulty with getting wet when not in his bathing suit and in a swimming situation (when he is then perfectly happy to spend the day submerged) but that has been changing lately (thank goodness!) and I was curious to see what would happen here.

And indeed, Jacob was seriously interested in cooling down and joining in the fun. What was most amazing was that he observed that many of the other boys had taken off their shirts and he asked if he could take his off, too.

And if you know anything about autism, you'll know how stellar this was, and that I was over the moon. My boy looking to what the other kids are doing and deciding he wants to do things the same way. And then having a great time doing so. (Autism Mom swoon.)

One happy boy

Much fun was had. Ethan was even in a generous spirit towards his brother and played in the mist with him a bit, horsed around under the shade tent.

Yes, that is Jake under that towel

And then? And then? I made the rookie mistake of counting my happiness chickens before they'd hatched. Because walking from camp back to Broadway to catch the bus home, somewhere in the middle of 111th Street, Jacob asked to watch TV when we got home and I did not say "Absolutely yes." I told he we weren't going to talk about TV right now.

Ethan had lost screen time for the rest of the day (don't ask, a third ignoring of my admonishment against doing something) and I didn't want to promise Jake TV right away until I could figure out how to wrangle keeping it away from Ethan at the same time.

And then some combination of the extreme heat and the earliness of the rising and the fickle gods of autism deciding their free pass had expired kicked in. Jake heard a "no" where I had said a "maybe" and he just lost his shit in a way he hasn't for a while.

Screaming crying wailing and shouting, much stomping and rolling around on the sidewalk. Snot pouring out of his nose and mouth and no kleenex or napkin in sight. (Autism Mom sob.)

Ethan stood about a half building away, pretending he didn't know us. He has reached the "age of much embarrassment" about his family, and having an autistic brother in full-on melt-down mode is, I would think, about as top of that list as you can get.

And it went on and on and I realized the idea of him calming down completely before we moved on was moot, so I walked a sniveling and occasionally still sobbing and shouting boy to the corner and we all caught a cab home.

And then it was of course dinnertime, but Jake didn't want me to leave him alone in his bedroom where the meltdown was continuing apace to go to the kitchen and make it (because of course by this time the idea of any TV at all tonight was completely out of the question, and he was all sad about THAT now).

Ethan was hungry and tired and wanting my attention too, and so I had two clingy, wiped-out kids and no screens to mesmerize them into relative calm while I got our meal together.

Eventually dinner was assembled, eaten; baths and showers were taken, pajamas donned. Jake was tucked into bed as early as possible (but not without one more teary mini-melt right as we were singing him to sleep).

And then, Ethan cuddled into me as I read to him from a book I'd been wanting him to try for a while - the first book of Diane Duane's "Young Wizards" series - and I got him hooked. He yelled "Noooooo!" when I put the book down, and picked it up to read himself to sleep a few short minutes later.

After trundling him off to his bed, I sat on the sofa in a deep mom-stupor.

What a day.

And I hear there's another one coming up tomorrow.

My 1 in 88

Jacob, March 2012

Today is World Autism Awareness Day and April is Autism Awareness Month. A big deal in the autism parenting community.

I am, as is usual these days, a busier than busy bee, slammed to the wall with things that MUST BE DONE. And a long school vacation is looming later this week.

But I could not let today pass silently, without notice on my blog. It's just too important.

Last year I wrote a pretty cool post about my son, Jacob: Every day is Autism Awareness Day 'round these parts and everything I said in there still stands.

Jake is now one year older, evolved and evolving; his conversational skills and artistic talents just bursting forth, more and more amazingly every day.

And he is still, and will likely always be, on the autism spectrum. A unique boy with a unique brain; a singular perspective on the world, which, thankfully, usually delights him.

I love Jacob with every fiber of my being.

But I hate that he struggles so mightily with language, with expressing himself, and sometimes with just simply understanding what people are saying to him. I see the efforts in his eyes; sometimes I swear I can watch his brain attempting to process. And then I see the pain when it just doesn't compute, and he switches off.

I hate that his relationship with his twin brother, Ethan, is so difficult and fractious. I know that this too will evolve, but it has been a thorn in my side for so long now, it is hard to imagine anything other than the state of fraternal siege we live in.

I worry about his future in so many ways. I want him to have the biggest, fullest, happiest, most independent life possible. I want him to always be surrounded by love.

But I know how harsh and cruel the world can be for those who are noticeably different.

And as much as I am alarmed by the statistics that have recently come out, how autism is on the rise as a worldwide phenomenon and is just increasing and increasing annually with little end in sight?

I am also weirdly comforted by knowing that Jacob will not be alone. That he will be be coming of age as an adult into a world increasing filling up with others like him, and the world will HAVE to change - and will actively BE changed by the higher functioning of his brethren - to accommodate Jake and his people.

1 in 88 is a number, a statistic.

But my Jacob is not a number.

He is a person.

A boy.

My boy.

This is the face of autism.

To me.

Jacob, March 2012

Magic

I don't believe in magical thinking, really I don't.

Well... not much at any rate.

But, sometimes?

I do believe in fairies, I do, I do, I do.

Blog fairies, as it were.

And the gods of Autism, who are sometimes merciful.

My last post, When Autistic kids get bored..., was about Jacob, and how I had resigned myself to patience about his morning waking habits; about how after nine long years he STILL waits for us to come to him.

And then?

The day after I posted it, I woke up to Ethan at my bedside, telling me he was going to be up for the day now. When I asked if Jacob was awake too, he said he didn't know.

I asked him to go check, and he shouted back from their bedroom (right around the corner from ours, it's a small apartment) "Yes, he's awake!"

"Well, tell him to get out of bed and come see us." I suggested, hopefully, for probably about the 100th time, knowing it was fruitless, that I would need to abandon my cozy warm bed and go retrieve him shortly.

But, wait... what was that I heard?

The sounds of a 100 pound nine year-old climbing down his bunk-bed ladder?

YES!

"I'm coming to YOU!" Jakey announced, very proudly, as he bounded into my room. I gave him a hug and kiss, directed him to take care of morning bathroom business, told him I'd meet him in the living room in 15 minutes.

And the next morning?

He got out of bed BY HIMSELF while Ethan was still sleeping, and came to me. Still a little hesitant with the newness of it all, still unsure it was the right thing to do.  "I'm coming to you, Mommy?" he asked, as he walked into the room..

"Yes!" I said. "Oh, my big boy, I'm so proud of you for getting out of bed by yourself and coming to me without waking Ethan!"

And then he climbed into our bed for a big happy cuddle, and then I took him out to the living room and we started our day.

And, yes, it has happened every morning of vacation, ever since: Jake comes to us, Ethan gets to sleep in. Win!

So you see, it seems there's some magic to writing words like these in my blog: "I have found that change does happen eventually, if glacially. Though much fortitude and patience is required."

Because then? It comes suddenly and immediately.

And the reason I believe it's more than just a fluke? This isn't the first time that this has happened.

Two summers ago, I wrote a post, Cruel to be Kind, about trying to teach Jake to successfully buckle himself into the car during summer vacation. I thought vacation time, with no pressing schedule, was the perfect time for a full court press.

In that post I said this: "And even though he doesn't get it today, still looks at me like a scolded puppy when I make him bumble through, I hope in the future he will look back on these times and know that it was as painful for me as for him."

And then, the next day? I got to write THIS post, No Sweat, about how he did it perfectly, all by himself, without prompting, the very next day!

See, Blogging magic! Write about how a process he's in the middle of learning is going to take forever? And Jake successfully masters the thing we've been working on for months or years... overnight.

It doesn't seem to work with Ethan, though. Because I have written that he will eat vegetables "someday, in the distant future" many a time. And he still treats all things green as if they were poison.

Damn!



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When Autistic kids get bored...

... there will be blood.

This morning I woke up at 8 AM to a quiet house. Too quiet.

Though a school vacation day, and the kids had been up late the night before, Jacob is usually incapable of sleeping past a rather early point. 7:30 at the outside.

If I'm lucky, I hear him stirring and calling out to me softly, make it into the boys' room to hustle him out of his top bunk and into the living room before Ethan is disturbed.

Otherwise? If I have been sleeping too deeply? I am awakened to the dulcet tones of Ethan stomping into my bedroom wailing "Jakey woke me up TOO EARLYYYYYYYYY, he won't shut up!"

But this morning? Nothing.

Wondering: could it, might it be? I tiptoed into the boys tiny bedroom, very quietly, just in case Jake was actually, truly still asleep.

And was greeted by a very happy boy, extending his hand out to me with something carefully cupped in it. And a bloody grin. And whispering in a loud sotto voce:

"I lost my tooth, Mommy! The tooth fairy is coming. She will give me coins!"

But lo, in his outstretched hand was not just one tooth, but two. I was very confused.

a nice pair of deciduous first molars

Jake had been mentioning a loose tooth for a little while now, as had the dentist at his last, fairly recent visit. But this usually translates into a very wiggly tooth with a lot of complaining a few months down the road, followed by it falling out within a few days.

This was rather unprecedented.

When I'd last given what I thought was the tooth in question a good wiggle (never thinking it might be teeth - plural and bilateral!) it had seemed to be loosening a bit, but nowhere near ready to pop.

But enter a bored kid with an hour to kill quietly in his darkened bedroom and... instant self-dentistry.

Now after I got him into the bathroom, took a good look at where the teeth came from (one from each side, definitely baby teeth, the upper first molars) and got the streaky blood cleaned off his lips, chin and hands, I rushed him into the living room, plopped him in front of the TV, and made a beeline to Mr. Google.

Turns out he was right on time. I knew that after the first, central eight baby teeth come out around age 6-7, there was a bit of a latency period with no loss before the bigger, back baby teeth start to shed. And everywhere I looked that timetable said "9 to 11" for when the next tooth falls. And it is usually these first baby molars, before the canines. Whew!

And examining the teeth, the treasures he had offered up to me with such pride, I saw they they indeed were just the tops of the teeth, the roots clearly eroded by Jake's permanent teeth pushing their way out through the jaw.

Their time may have come too soon, but only by a bit, their last toeholds in Jacob's jaw being no match for his strong, insistent fingers.

Oh, and in case you were wondering why Jacob had to lay, bored, in his bed for about an hour waiting for me to come to him, instead of just getting up and either starting his day or coming to ME?

Autism. A certain intractability and rigidity to lessons learned early in his life.

When Jake was a toddler, and finally capable of getting out of his bed by himself? We told him to wait, and with a monitor on in the room, I always came to him the moment he called out to us, sometimes even before, as I was quite sensitive to the initial sounds of stirring. There was no reason for him to get out, when what he wanted (me!) would come to him.

And for years, I was so glad Jake waited for us. I never had to worry about my autistic boy wandering around the apartment by himself with us asleep. Not that there was much trouble to be gotten into in our place, and Jacob has never (THANK GOD) been an escape artist or bolter.

Even as Jake got a bit older, and I could choose to go back to bed once I'd gotten him set up with breakfast and TV/Computer/DS, steal an extra hour of sleep on the Sunday mornings when Jake arose at 6, it was comforting to know he was not attempting these things on his own.

But now, when Ethan would sleep until 10 AM if he could, when a monitor on in a 9 year-old boys room would be too intrusive, when it would make so much sense for Jake to quietly get himself out of bed and come into my room to get me?

He just won't do it.

He is too entrenched in his habits, his brain telling him: "this is the way it is" in spite of my having said to him EVERY Friday and Saturday night at bedtime, for A YEAR now: "Jakey, when you wake up tomorrow morning, don't lie in bed and call to me, climb down and come GET me, it's OK!"

Nope.

Or rather: not yet. Because I have found that change does happen eventually, if glacially. Though much fortitude and patience is required.

And someday (soon?) he will surprise me by appearing at my bedside of a Sunday morning at 7 AM, ready to start his day.

Hopefully without more teeth in hand.

UPDATE: Looked in his mouth the next morning (upon his proud  reminder announcement: "Mom, I lost my teeth!") to check how the gums were healing and saw the bright white point of a permanent tooth already poking through on one side - so they WERE ready to pop, indeed.


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Tough Night in Autismville

As any of you who tapped into my Twitter stream last night would know, Jacob had a really rough time of it at bedtime (as did I). I am still trying to figure out exactly what happened, to fill in the gaps, figure out the whys and wherefores, but how it manifested was this:

A one hour non-stop crying and screaming fest from 9 to 10 pm, followed by another hour of cycling through whimpering, tears, giggles, and more tears until about 11 when he finally fell asleep, exhausted. Poor guy.

And Ethan, of course, could not go to bed until Jake went down. He lay on the sofa, escaped - as much as he could in our small apartment - into his book.

Jake does not melt down often, is generally pretty damn happy. For a kid on the autism spectrum this is awesome, and I am grateful for it every day. 

But when he does?

Oh, my.

He is the unhappiest boy on the planet.

It starts slowly. His eyes well up, his lip trembles. I can see it coming, but an seemingly powerless to stop it.

Sometimes it's a brief shower, a quick downpour, and then it moves on.

But, more likely than not, he just has to go all the way through the maelstrom until the happy boy I know can emerge out the other side.

I am alone with the kids this weekend - Dan is still in Seattle - and so don't have the time or energy to write out the full long story of this and still get enough sleep, but I can copy and paste in my tweets from Friday night, so you can see a bit of what I was up against (in 140 character snippets):

And then, of course, today, Jacob woke up asking "What happened to me last night?" and "What happened on Friday, Mom?" and wanted to TALK all day long about his crying and screaming AND about swinging at school, when I just wanted to forget it and move on. Sigh.

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Step by Step

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

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

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

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

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

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

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

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

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

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

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

WHAT?

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

Monumental.

Unprecedented.

An incredible thing that I feared I would never see.

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

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

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

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

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

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

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

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

But suddenly it was OK again.

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

And so off we went.

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

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

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

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

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

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

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

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

Let him be.

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

Embracing what will come.

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

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Shoot Me Now (singing the health insurance idiocy blues)

Me? I am not by nature a brawler, a fight-picker; someone fond of my own angry self. I'm a conciliator, a peacekeeper. I really dislike confrontation, have been accused of avoiding it by sidling away, like a smiling crab doing the side-step.

But somehow, as I sit down to write a lovely "just write" post tonight? I can't do it. I have no lyrical in me. I find myself steaming and gunning the throttle. Again.

Maybe I need to start a theme day...  Cranky Rant Tuesdays.

My tag line? "Come visit my blog on Tuesdays when you want to feel better about YOUR life by reading about all that's gone pear shaped in MINE!"

Think it will catch on? Hmmm.

So, you may be asking yourself (those who aren't backing away slowly, that is)... What has my knickers all in a bunch? My panties in a twist? My... well, you get the picture....

Health Insurance idiocy. Also Big Pharma greed. And Chain Pharmacy stupidity and incompetence.

OK, now it's time for my Canadian/English/Irish/Australian/Norwegian/etc.etc. friends and readers to snicker and gloat. Yes, all of you who live in those godforsakencommunist countries that have - GASP! - socialized medicine.... go ahead, I'll wait.

OK, done now? Good, let's get on with it.

First the set up: My son Jacob takes a number of psychoactive medications. He's on a "cocktail."  Sounds fancy, but it's not. He's just... complicated in his neuro-biological differences. And so the help needs to be complex, too. Really.

And with a very intelligent intelligence at the wheel, prescribing and tinkering. We (very luckily) have that.

And the 3 different medications he's currently on (very low doses, all, don't worry)? Are keeping him rolling along beautifully right now. Calm, happy; NOT riddled with anxiety and gnashing his teeth; NOT crumpling into a sodden weepy heap over a dropped pencil. And also WITH increased concentration and attention; able to really listen and learn better than ever. (Spitting over left shoulder 3 times and warding off the evil eye.)

So, we recently needed to change health insurance policies (due to an expiring COBRA situation). My husband and I are both freelance / self-employed. We pay for our insurance ourselves. You can see where I'm going here, yes? There really are only lousy overpriced policies available for people like us. And we picked the best of that bad bunch. But still...

We are now in the situation where the medicines that Jacob has been prescribed and HAS BEEN TAKING, the ones that are demonstrably working for him, are needing to be "pre-approved" by the insurance company.

Yeah, that's as much fun as that sounds.

And the approval process? So NOT what was described to me by the pharmacist: "Have your doctor call this number and explain why it needs to be, and they'll approve the medication." As if.

When the doctor called me back after my frantic message, I could hear the stress, the weariness in his voice. He told me that it's not just "a phone call" that's required, but rather it's TEN phone calls. And being transferred from department to department, and being put on hold, and hung up on. And then calling back, and being transferred again.

"They make it hard on us doctors on PURPOSE, to discourage us from prescribing certain medications -- the newer, still patented ones. They think we'll give up and pick something older and cheaper -- even if it's inappropriate for the patient -- just to avoid the hassle and time drain. It's harassment and coercion, pure and simple."

And then this time it wasn't just a conversation, but FIVE full pages of paperwork he had to fill out - questionnaires and ESSAYS to write to justify giving this medication over others which are in the same CATEGORY as the one the doctor had prescribed but are truly DIFFERENT medicines.

Because a bunch of accountants' opinions about what medicines my autistic son needs to be taking count SO MUCH more than those of his highly regarded pediatric psycho-pharmacologist who has been practicing for a bazillion years and regularly lunches with and picks the brains of the guys who literally WROTE THE BOOKS on most childhood psychiatric & developmental issues and are at the forefront of all the cutting edge research.

(Sorry, I shout a lot in ALL CAPS when I'm truly peeved. And I'm truly peeved, in case you hadn't noticed.)

This was all today.

Yesterday it was me showing up the local D-R pharmacy counter at 6:15 to pick up a medication we had run out of, that Jake needed THAT NIGHT to find a long line of unhappy people, EVERY ONE having trouble with their prescriptions being filled properly.

And I was only AT the motherfucking D-R because they (and other big chains like them) had effectively closed down all the small family run pharmacies in the nearby neighborhood where the pharmacist KNOWS you and gives a rat's ass about your family.

Now, being all sensible-like, I had called at 5 PM and spoken with the pharmacist there to make SURE they had gotten the script called in and that I could pick it up right away. I was told yes, definitely in. He had me hold on while he checked to make sure it was in stock (it was), told me they were busy and to come for it after 6. Took Jake's birth date info.

But when  I get to the front of the line? No filled bottle waiting for me, no prescription sitting in the in-box waiting to be filled. Seemingly no record of it being called in at all. Questions of my sanity ensued... am I CERTAIN it was THIS D-R and not the one up the road? YES!

And not only had they no record of my doctor calling in the prescription, but they had no record of my son Jacob in their computer. Which is quite odd since we've been having prescriptions filled there since the boys were BORN, 9 years ago.

Oh, what was that? Since they merged with another Pharmacy Giant and put in a new computer system a few weeks ago it WIPED OUT all their patient and medication data and now EVERY patient is considered a new patient and they have no history on anyone. Nice going, guys. Well done!

Would I please step aside and wait while they try to find Jimmy Hoffa my son's prescription.

Finally the pharmacist that had taken my call and gone off shift at 5:30 returned the page and straightened it out... the prescription (unfilled) was sitting on the back counter, face DOWN. Because it couldn't be entered into the computer, because they didn't have Jake's info in the computer, because he's a "new patient."  Riiiight.

So it's going to take ANOTHER HALF HOUR to get him into the computer and get the prescription filled. And can I stand over there with the growing crowd of fuming customers to wait, please.

And then? After that fun-filled 1/2 hour?

THAT'S when I find out that it's not automatically covered on our new, stinky plan. That it needs to be "pre-approved" with a call from my now-closed doctor's office to the insurance company's bean counting gate-keepers. 

Or? I can pay retail... $266.

Motherfuckers.

And do you know? It's really not a new medication at all. It's a new formulation of an OLD one that has been around for years. But someone figured out how to make a really good time release delivery method for it. So THAT'S the part that's patented. That's why it's so much $$.

And if my son is going to take this medication, he really needs a steady supply in his blood stream, I really can't give him 6 pills a day at four hour intervals, waking him up in the middle of the night for meds now, can I?

So, yes, he NEEDS this expensive time release formulation. Which is THIS expensive because... they think can get away with it.

AND THEY DO.

My son needs his evening and morning dose.

I get them to break up the prescription and sell me 2 pills at retail.

I go home, crisis averted.

And yes, I may have exploded a few times in the drug store. Especially when they pretty much accused me of hallucinating the 5 pm conversation with their other pharmacist.

And, yes, some of this is my own damn fault for waiting until the very last minute to get the refill, turning something that should have been an annoyance into a crisis. That's ADD's calling card there, folks.

And did I mention that during all of this the kids were being watched by the upstairs neighbors, because Jake was still finishing his dinner and they really didn't want to come out to the store with me, and I was only going to be gone 15 minutes?

Yeah. I owe them. Big time.

OK, rant essentially over. Jets cooling now....

And that concludes today's edition of Cranky Rant Tuesdays at The Squashed Bologna.

Tune in next week folks, to hear all about the "check engine light" in our 1997 Toyota that just won't stay off.

(Don't you just wish you were me, now?)


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When Pigs Fly

It's that time of year again.

Counting down, getting close to my boys' birthday in late July.

Plans must be laid, preparations made.

Not the least of which is the cakes.

I make awesome birthday cakes, my one claim to domestic fame.

Think I'm exaggerating (as I have often proclaimed my complete disinterest and ineptitude at most things housewiverly)?

Nope:

Jake's "Very Hungry Caterpillar" cake, 2009

Ethan's "Lapras" Pokemon cake, 2010

(Want to see them all? See this post HERE)

In years past, I have pretty much known what Jacob's current favorite characters were, his obsessions up front and obvious. I have asked the rhetorical question: "Jake do you want a (insert favorite character here) cake this year?" And he has said "Yes." And that's it. Case closed.

Ethan's choice has been obvious and easy some years. Others have required research and negotiation, a delicate balancing between his desire for elaborateness and my ability to make 2 cakes in one day & evening while managing to still get enough sleep to function at the party.

One Pokemon of his choosing: yes! An elaborate battle scene with multiple Pokemon and trainers? Not in this lifetime, kid.

But Ethan will communicate with me, we'll hash it out together, sometime over the next week or so. If Wilton has ever made a cake pan shaped even vaguely like what he wants, I'll head to E-bay to acquire. If not, I'll hit up the internet coloring pages to create a pattern.

For Jacob, on the other hand, this year is a bit of a mystery; his cake, a puzzle that needs to be solved.

You see, this year, he is paying attention. He has been talking about "Birthday Cake" for about a week now. Constantly. He REALLY wants to help me make it, and is very specific that it MUST be round.

For some years now, I have been a bit smugly pleased that my son is "less rigid" than most other kids on the spectrum. I figured he was just innately more easygoing, thanked my lucky starts about it, thought it was his inborn "happy-go-lucky" personality shining through. (Can you see the smack-down coming?)

Turns out? It was because he was mostly just oblivious! As he has "woken up" into the world, is processing so much more, really understanding what is going on around him in a much more profound way... he is getting REALLY OPINIONATED, and well, rigid about things.

Le sigh.

So I can't just make a reasonable suggestion, have him go: "yes" and just carry on with whatever I make his cake to be. He wants it HIS WAY.

Now, if he were better at communicating what he wants, this would not be be MUCH easier. But he's not. Autism is a communication disorder, see. I know this seems like such a little thing, barely a blip in the big scheme of things,

But I know if I don't get it right he will be miserable. If his cake is "just right" what he really wants? Happiness will ensue.

No pressure here folks, really.

Well last night at bedtime I got him in an expansive, expressive mood. When he started up with the "I want my birthday cake, Mom!" routine,  I actually got him to answer some questions about it.

What he appears to be telling me is that he wants: a ROUND cake with layers "a tall cake, Mom."

Also? Chocolate. "Brown, darker brown chocolate cake!" No doubts about that. Damn!

As I make two cakes every year for the party (Twins!) and not everyone likes or can eat chocolate, I have always made one chocolate and one vanilla or flavored vanilla (lemon/orange/strawberry).

Since Ethan is a chocolate fiend and believes that non-chocolate cakes are a disgrace to desert-hood and have no reason to exist, well, you can see that Ethan's cake has always been the chocolate one.

So now? I am going to have to make two chocolate cakes (one gluten free for Jake) AND some lemon-vanilla cupcakes for the non chocolate crowd.

But all that aside, back to Jacob's elaborate plans. If I've got this straight (and this is for sure what he told me tonight, whether it changes tomorrow remains to be seen), he wants this cake to have:

"Yellow frosting, mom. Yellow AND orange frosting."

"OK. And what kind of picture do you want on it, Jake?"

"A pig!" No hesitation there.

Really? A pig?

"Jake, you want... a... pig?"

"Yes, Mommy! A white pig, Mommy! With green eyes, Mommy!"

"OK, a white pig with green eyes.  Jake, you got it." 

I kiss him a final goodnight, climb down the ladder from his top bunk, and then hear a little voice in the dark:

"With wings, Mommy, a white pig with wings."

So this year, in late July, be prepared to see a white pig with green eyes, flying across a TALL birthday cake. (And then coming to a blog post near you, soon.)

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What He Needs

Today was the last official day of public school here in NYC. Ridiculously late by any standards.

Ethan was already gone, his camp having started yesterday. I gave him a free pass to miss the final day and a half of what is essentially babysitting, because, as he put it: "Everybody makes friends the first day at camp, Mom, I don't want to miss that." Socially astute, this son of mine.

So today I was at his school even though he wasn't. I dropped Ethan off at camp then u-turned and headed back down, passed my street and kept going. Rebounding many blocks in the opposite direction to take care of some final paperwork and say some goodbye-for-summers.

New York City is a landscape of micro-neighborhoods, and so I was also saying goodbye to this comfortable one around Ethan's school. It's close enough to home and filled with useful stores and services, so that we will probably be by there at times this summer; but it will no longer be part of my daily mind-space.

I therefore have my summer & school-year routines, each different, each looked forward to and/or missed when in the opposite mode.

Ethan's camp is in the same uptown neighborhood as his preschool had been, so there is a lovely quality of familiarity and return each summer. I catch nostalgic glimpses of 3 and 4 year old Ethan around every bend.

Sweet memories wafting up, helping to ease the pain of Ethan's new-found "Just leave me at the entrance and don't let the gate hit your ass too hard on the way out, Mom." attitude he has suddenly adopted at drop-off this summer.

Where once there was clinging & kisses, there is now quick dismissal. I knew this was coming, was even looking forward to it in some ways, but it's hard to reconcile with the boy who still climbs into my lap each evening at bedtime, fiercely demanding his talk & cuddle time.

Outside Ethan's school this morning, I ran into my friend Sandra. She is all excited about (and exhausted preparing for) a big European vacation she has coming up.

Alone with her husband.

Unfathomable to me.

Though we have kids the same age, she is more than ten years younger than me. Her daughters will be having a blast at their Grandparents home, her parents being more than 20 years younger than mine, making all this possible.

But I also realize that it's not all of the unfathom. Even were we all so much younger, even had we the financial resources to pull such a trip off, it would not be on the table for us, just not in the cards.

Jacob needs me just too damn much.

He could not tolerate that large a block of separation. And frankly, truth be told, neither could I.

It feels like another life, the one in which I traveled for work and pleasure, hopped on and off of planes, packed with precision and ease for days, weeks, or months, and just set off.

It WAS another life, and I was another me.

A not-mother me. A not-yet-autism-mom me, for certain.
 
This summer we are looking into the possibility of sending Jacob to a special needs sleepaway camp for one week. It will be in a town near where my in-laws have their vacation home. A place comfortable & familiar to Jake.

I / we could really use the break. And yet I'm filled with trepidation.

We have never been separated for this long before. One night twice, two nights once. That's pretty much all.

I am his ambassador to the world, his interpreter. I know his thoughts, needs, moods like none other. I am what he wants, needs; always.

And yet... and yet... he is nearly 9. He does go to school every day and they seem to have figured him out just fine. He is getting older, and he needs to grow more independent, not just stranger.

Jacob is awesome these days. He is expanding his repertoire, telling stories, constantly, that begin with "Once upon a time..."

And even though they are all variations on a few basic themes? They are VARIATIONS, not rote repetitions. Yes, he is making things up, combining elements in novel ways, inventing characters. AWESOME!

But the talking all the time is getting exhausting. His week off school (that comes to an end TOMORROW, YES!) has been quite a challenge for me.

(Yes, I've seen every kids movie out now. Cars 2? Twice.)

And his full month off, after summer school ends, will likely be likewise challenging. This camp could really be a godsend. For all of us.

We are probably going to try it, if they'll have him (application is in and we are awaiting) and if we can scrounge up the cash to cover it.

But still, I am afraid. I fear he will be too sad, too lonely, too alone without anyone who understands what he is thinking/feeling/needing.

And I know, even though I desperately need the break, I will spend much of our time apart thinking about him, worrying about him, wondering how he is doing.

The camp number on speed-dial, my fingers hovering, constantly, inches from the phone.

He needs me.



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And so it goes

I thought it would all get easier as Jacob got older and matured, grew into himself; as his language developed, engagement with the world expanded.

Time to think again.

Right now it is getting harder and harder to go out with Jacob. Along with expanding interest he is becoming less easygoing. He now wants what he wants when he wants it. And also? He will not be easily denied, distracted, redirected.

And Jacob? Loves babies. If I am anywhere near a baby or young toddler  (= pretty much anywhere out of our house) I can't take my eyes off him for a minute, so great is his love of and desire to interact with babies.

With babies we know personally? Usually a tolerable situation will emerge (with close supervision) and can actually be a great source of delight for all concerned. Because Jacob will talk to a baby for hours, asking him questions, shaking a rattle in front of her, taking a just walking toddler for a cruise around the room.

And the babies? They love Jake. Because he talks to them like they are people, equals, doesn't talk down to them in baby-talk; will pay them endless attention. And what baby doesn't want endless attention from a big kid?

Jake with baby friend at Greta's Bat Mitzvah this May

With complete strangers, however, who see this giant, 80-pound, 10-year-old-looking, yet 3-year-old-acting boy about to pounce upon their tiny baby? A frightening situation at best.

I look away for a minute, like to check on my other son, make sure he is still in sight. When I look up there is Jake making a bee-line for a stranger and her... oh, no, sleeping baby. So I have to drop everything and run an interception move, shouting at the top of my lungs: "Jacob, no! Come back, we don't know that baby!"

Sigh.

Today was Ethan's 3rd grade end-of-year picnic. I had no sitter, my husband was both working this evening and so jet lagged (having just returned from his week working his ass off teaching in Milan) as to be a useless zombie this afternoon... in other words, I was (once again) alone with both kids.

So I had to bring Jacob along. It won't be so bad, I thought, even though Jake goes to a different, specialized school, he has been coming to his brothers events for years, no biggie.

Jake used to be easy at these things, happy to sit near me and play with toys I'd brought along.  But now, runs off to the far reaches, often in search of babies. Fortunately, relatively scarce at this big kid gathering.

But the other thing he does? Try to talk to and interact with the other big kids? It doesn't go well.

Because he's strange.

He's either talking about movies, reciting when they will open and what they are rated, or he's asking strange questions. The kind that might get him beaten up, like: "Are you a baby?"

Or? He's walking right through the middle of heated ballgames, not noticing there's a game going on. Or even worse, noticing and grabbing the ball and running with it, because he thinks that's playing with the big boys.

Great. Something else that will be getting him in trouble. (That happened, badly, yesterday. I started to write about it, just couldn't finish that post "And so it begins" yet, even though it should have preceded this one. It's still too raw, will be coming soon.)

Today? He'd brought a large toy train with him, and proceeded to find the one patch of dirt in the entire lush green lawn to sit in and roll his train around. He basically swam in the dirt.

Some younger kids came along to help him dig a hole with a stick and bury his train. I am sure their parents did not appreciate the lure of the dirt, but frankly as long as he was staying out of trouble I was happy.

Until he started throwing some dirt. And a little girl didn't appreciate that; retaliated by shoving his face into it, before I had completed my charge up to him to stop him.  

And these days? Jacob, once upset, gets stuck. Really stuck. And so I have a hysterical, crying, screaming autistic kid on my hands now, too covered (head to toe) in dusty dirt to make a fast escape.

So there I sit, surrounded by the other families trying not to stare at the spectacle on my blanket as I clean Jake off, pack up all our stuff. I make arrangements with our next door neighbors to bring Ethan back with them so he doesn't have to cut short his thrilling dodge-ball game to slink home with his autistic brother.

And I thank my stars that Ethan is in a wonderful (NYC public) school, that this is not a much judgmental crowd. My friend Sandra's daughter, kind and sympathetic, is offering Jake her treats to try to cheer him up.

Another mother whose children have issues, who is on the PA's Support for Special Needs Committee with me, comes by as we are nearly ready to go and marvels at my patience. I can't really take credit for it; it's the patience of the weary, of the worn down to a nubbin Mom that I am these days.

The tears are winding down, finally, as we board the bus up Riverside, only a few stops but far too far to walk my exhausted son. I am grateful for a nearly empty bus, as he sits down in the front "elderly & disabled" priority seats.

And you know, he IS disabled, even if it's invisible. We can rightfully claim those seats, but still, I'm glad that we're not making some old lady walk to the back, not engendering the stink-eye from the other passengers.

Because I just couldn't take that today.

Soon we will be home; he will be bathed, pajamaed and happy again.  Soon he will have moved on into ready-for-bed mode. But me?

I have left a part of me on that lawn where the other parents are playing ball with their kids or chatting with their friends. Where I am wiping the dirt from my sobbing, screaming son's limbs and wondering what is next.

What, my God, is next?


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A is for Autism

A is for Autism.

For April is Autism Awareness Month.

A is also for awesome, like my son Jacob, a nearly nine year-old boy, with autism.

Jake is also astonishing, admirable and amazing. And that's just the "A"s.

He is, in fact, a whole alphabet soup of cool...

beautiful, charming, dynamic, engaging, fabulous, giggly, huggable, impressive, joyful, kissable, loving, marvelous, notable, outstanding, peachy, quick, remarkable, smart, terrific, unique, vivacious, wondrous, exuberant, yummy, and zestful.

And then he is also, at times...  

anxious, bouncy, confused, disconsolate, exhausting, fearful, growling, hellacious, impulsive, jarring, klutzy, loud, maniacal, nervous, overwhelming, puzzling, quixotic, relentless, self-directed, tangled, unhappy, vociferous, wretched, excessive, yawing, and zoned-out.

This is his autism. Our autism. Autism as we know it.

Different for everyone, this is Jacob's particular flavor.

Some days it's the sauce on the side and some days it's the whole meal.  Some days tangy, others bitter.

But it is always a part of who Jake is.

I always see the beauty and value of my son.

Some days I can see how his autism is a part of that beauty, giving him his unique vision; what some have called the gifts of autism.

Other days he is so unhappy, actively in distress, and all I can see is how it causes him pain, confusion, unwanted isolation.

And then I am mad at autism, which is fruitless, like being mad at the wind. But still, I am.

I am aware of autism every day.

It is our life.

And now, so are you, maybe, a little bit more.

This post has been inspired by and linked up to Jenny Matlock's Alphabe-Thursday writing meme. And choosing an "A" word, for me? Now, THAT was a no-brainer if ever there was one.

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


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Stream of Consciousness Sunday on Monday: Jacob on my Mind

I know I'm a day late (hence the ridiculously long post title). When I didn't get to this on Sunday, I figured: OK, maybe next week.

But then Fadra wondered on Twitter where I was and reminded me the linky stays live all week. And then today I found there's some stuff stirring around in my brain that I wanted OUT, but I've got neither the time nor patience to craft a thoughtful and careful post.

I just wanted to spew it out in something more like... stream of consciousness. Perfect. Here goes:

@@@@@@@@@ 

Jacob, my son on the autism spectrum is weighing heavily on my mind these days. He's just... off, lately. If you don't know him it's hard to explain. He goes through these phases, these cycles. He's rolling along, moving ahead, feeling like we're on a nice even keel, and then Whammo. Not.

I mean, he's always autistic, clearly still on the spectrum, but when he's "up"?  When things are clicking, when his brain is humming, when he's "on," on a roll, on his game... whatever you want to call it, he is brighter, happier, cheerful, eager to engage, eager to learn, very much related.

Not necessarily easy to be around, since in his cheer and enthusiasm he is often still too loud, close, insistent and repetitive. But still, happiness makes up for a lot.

But when he's "off'? It's not that he doesn't still have these peppy days, hours, minutes. It's just that he is terribly and unpredictably variable. That the the "up" Jake interleaves with the "off" Jake, who is at times: cranky, Irascible, louder, withdrawn, sad, angry, tired, growling, manic, pale, wild, lethargic but generally, globally much LESS related. 

So even in his offness? Very variable. There are "cranked up" and "down & out" flavors to the off. He says "Get out of my way" and "Go away" much more than the "Mommy come here" boy of his happy, shiny days.

And when he's going through one of these variable times? On any given day, hour or minute, you never know which Jake you're going to get: amazing-Jake or not-here-Jake. Flip the coin, your guess is as good as mine.

And the not knowing who I'm getting and the not knowing why he is like this again? Is killing me slowly.

@@@@@@@@@

Yes, I'm probably being a little dramatic there. I have to say the last line surprised me. I didn't know I was going there until the words just popped out. But so they did.  So it's obviously something I'm feeling, however deeply buried it usually is.

Also, people? Not only did I write this in a real 5 minutes (I've been known to fudge a bit) I wrote it in a real New York five minutes... while riding on the #1 subway train, on my way to the midtown DMV to renew my street-parked-car's expired registration... at lunchtime... on a Monday... at the end of the month.

Glutton for punishment? Perhaps. But it needed to be done, and the ADD of me just could. not. do. it. until it was overdue. Sigh.


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. (BOY, that part is hard for me!) This is writing in the raw.

You can do it, too!  Click on the link and let's hear your 5 minutes of brilliance...

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