Monday is... Monday

I like fluffy clouds

Do you ever hit that point in your burnt-out mental and physical exhaustion where your brain goes blank and you find yourself stopping in the middle of sentences and losing your point all the time and your mate and children stand there and finally ask to please please just buy a verb or noun so they can glean some inkling of the VERY important thing you were going to tell them, before you just

stopped

in the middle for no reason, your mind gone blank or distracted by something shiny?

(No, me neither, nope, never happens to me, nuh-uh.)

Do you ever find yourself answering the simple social question of "And how are you?" with: "Hanging on to sanity by a thread, but haven't let go yet" ?

Do you post Facebook updates that read: "Ok, resolving to be less negative and count my fucking blessings. That's 1 fucking blessing... 2 fucking blessings... 3 fucking blessings..." ?

Do you find yourself getting ridiculously pissed off that Words-with-Friends doesn't recognize "scumface" as a word, because it would have given you a triple double word PLUS the all-7 bonus for a gazillion points?

Yeah.

It's been like that lately. 

And I'm not going to go into the details here because if *I'm* tired of my whining, you all are surely quite done.

And unlike in the past, the pressures are not creating beautiful lyrical late-night writing, but rather rendering me useless in my insomniac stupor, cackling away at inane things on "Damn-You-Autocorrect" when I should be sleeping.

Yet I don't want to fade away silently into stressed-out oblivion.

So here I am for the moment.

(Picture waving to you. But HELL no, I'm not turning on the computer camera because then you would see the unholy mess behind me. Plus the stain from Jacob's 1/2 eaten but "all done" chocolate Rita's Ice that plopped onto my shirt in a backsplash when I threw it into the trash on the way home tonight.)

Repeat after me... "2 weeks until they're all back in school."

My mantra of the moment.

All the other things I also need to accomplish in these same two weeks, when all I want to do is enjoy this last scrap of vacation-time with my kids and catch up on some sleep? Not going there, but just imagine a 10-ton dump-truck unloading onto me and that about sums it up.

Catch you on the upside, folks.

And between now and then? Expect some more gallows humor, it's what keeps me hanging onto that last bloody thread.

Burnout Factor

Me & my Aunt Eva, 1992

It has been days since I have written. I am not wanting to write; and I ALWAYS want to write.

I even missed my Hopeful Parents day on Monday (I will somehow write that post and put it up tomorrow, better late than never).

It's not just the busyness. I am always busy.

I am just seriously tired of what is running around on the hamster wheel of my brain right now.

I am tired of death and autism and special needs and medications and doctors and insurance companies and death and care-taking and dealing with medical establishments and death and clutter and real estate and paperwork and death and money (the lack thereof) and death.

I have had too many conversations about cemeteries and plots, about hospice protocols, about funerals.

My Aunt Eva is still with us for now, in that childlike state some people enter in the process of dying.

Annette says she has moments of playfulness and energy when she will awaken and smile beamingly at everyone gathered around her, lift her hands up by her face at wiggle her fingers, the wordless way one plays with a baby. And yet, she is the baby this time.

She speaks rarely, and sometimes in German, her first language. When Annette shared this I remembered something my husband had told me, of how his father, slowly dying in their apartment when he was a teenager, babbled away in the Yiddish of his childhood for the last few weeks of his life.

I'll be seeing Eva today. Saying hello and another possible goodbye. I'll be able to manage a long visit with my mother, too, as Ethan is off on a three-day camping trip, and thus I don't have to rush back to the city to pick him up at 4.

On Tuesday, driving out to Long Island, what is usually a fast, against the flow of traffic trip ground to a screeching grinding halt early on, in Queens. I figured there had to have been an accident, and there were, in fact, TWO on the Grand Central Parkway at the same time.

Eastbound, in my direction, it was just a minor finder bender, but a little further on, Westbound, was a major conflagration. Not just due to rubbernecking, as there was an emergency vehicle in the left lane of our direction, I passed so slowly that I looked over to the other side, just to see what the hell was going on that could snarl traffic in both directions so thoroughly.

And in that moment I saw a white sheet being lifted up, an outflopped arm - tanned, male, short sleeve blue uniform shirt - being placed back within, once again enshrouded.

I couldn't unsee it. It played over and over in my mind. A fatal accident. I tried not to take it as an omen. I was ever glad that I was alone, that the boys weren't with me, that questions did not need to be asked and answered.

Ethan is already a little over curious about car accidents, thrilled with the tale I told him of the near disastrous crash Dan and I were in on our honeymoon.

I have not yet spun for him the tale of the taxi cab fatality I witnessed, was a part of, one morning newly pregnant with him and his twin.

But it came back to mind a lot Tuesday, one tragically dead body calling up the ghost of another.

And really, could everyone just stop dying for a while. I want to write, think about something else for a change.

On Tuesday I made my mother promise to stick around until her 90th birthday in September. "We'll celebrate together!" I'd told her, as Annette, Trina, Mom and I munched on cookies from the Hungarian Pastry Shop I'd brought out with me.

"I'm planning to live to 100!" she'd reassured me.

A promise I hope she''ll keep.

SOC Sunday: reallyreallystreamofconsciousness

This one is really really stream of consciousness, folks, not those fake SOC posts that I;ve been thinking about for hours and planning in my head so only the actual monkey-typing part is real. Let's pretend it's really Sunday and not wee early in the morning Monday and I'm going to back-date this sucker, okay, just pretend with me. I am flat out flat out right now between producing Listen to Your Mother - show goes up on SUNDAY - yikes! - and then trying to actually BE a mother, and a care-taking daughter. and feeling like I'm failing miserably at BOTH right now - haven't seen my mother in a week too busy busy busy. Got a call from my aunt Marilyn's nursing home yesterday morning that she'd had another toe infection - nothing to be alarmed, just keeping me in the loop - and I'm all stabbed with guilt because I haven;t brought my Mom to see her sister in over a MONTH now but it always makes her so sad to see her sis so far gone, but then she feels guilty when she doesn't go, dilemma, dilemma.

Jake acting up a lot lately repeating "Timmy is a Stupid Kid" over & over (his own lovely take-off on the cartoon show Fairly Odd Parents theme song). I think he KNOWS it annoys me - because he's looking right at me and smiling his "I got you" smile while he does it - & is doing it because he's not getting enough positive attention from me as I am balls to the walls (yes metaphoric ones) with this LTYM show which is way more work than I had bargained for in the beginning but it feels so good to be working and being more than just mom but I know I am not being a quite good enough mom while I am so busy and mostly just DISTRACTED.

And thank GOD for wonderful neighbors who actually took Jake for 3 hours yesterday when my sitter had to leave early and my rehearsal was still going on and my husband was working at a convention and couldn't leave early because he was on a late panel. They're actually the most amazing people on the planet, kind and generous and smart and funny and fun to hang out with and I don;t know what I did to deserve them but whatever it is THANK GOODNESS. and then I feel guilty because I don;t know what i can ever do to repay them for all the slack they pick up for me other than occasionally picking their boys up at school.

ANd the LTYM rehearsal was today and so fabulous and the show the show is going to be WONDERFUL and I wish the theater were bigger because we are so sold out and so many of my procrastinator-y friends didn't think to buy tickets until it was too late even though I TOLD them it would sell out a month ago. le sigh.

And my poor neglected blog - I tried to do Momalom's 5 for 5 linky but only got to 3 for 5. even started the last post - "Listening"  - really wanted to write that one & had a lot to say there, but only got four sentences into it when had to put out another LTYM fire. lesson learned for next year - expect very little elsewhere in my life during pre-show month of April. But April April April is Autism Awareness/Acceptance month as I was supposed to be writing writing writing about autism all month long and I so didn't. I stared with a bang and then fizzled out and don;t let me get started on how that's a metaphor for so much in my life. And now I need to go try to get a little more sleep so BAM it's over, stream shut-down. goodnight.

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

• 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...

K is for Kryptonite

K is for Kryptonite.

That stuff that saps Superman’s strength.

Becoming a special needs parent is what launched my superhero career, autism supermom to the rescue.

But there is never the super without the downside. The kryptonite.

And what exactly is MY kryptonite, you ask? The source of my vulnerability?

Good question. I’m not entirely sure. It appears to be my own brain, sabotage from within.

I am tired, weak; feeling so far from any semblance of regular humanness, let alone a super-powered self.

Ever since I turned 50 and my gall bladder went rogue on me, I have been feeling the spiral story of my life headed in the wrong direction, away from the warming glow of our home star and into the gloaming. Hurtling toward night.

And because I have these wonderful children, I don’t give in to it. I still pull on my big girl pants each and every morning and get the essential jobs of mothering done. But it gets harder with each passing day. 

Everything takes longer than it should. Requires more and more of a me that feels increasingly less and less.

I know that somewhere inside me, buried deep, my powers still exist. The shiny diamonds of my joy and strength.

But dispelling the kryptonite, recognizing those green gem-like crystals of doom and sifting them out from all the other, essential minerals in my bedrock…

Well, that’s the task now isn’t it?

That’s the task ahead.

This post has been inspired by and linked up to Jenny Matlock's Alphabe-Thursday writing meme. And yes, I know it's Saturday today, not Thursday. See above mention of how everything takes too long these days. K is also for "kicking my ass" which is what life is doing right now.



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SOC Sunday: January Blues

Sunday. Yawn. Sunday. Thank goodness for SOC Sunday because coherence and my brain are not converging tonight. And this? Gives my incoherent rambling legitimacy. Yay, me!

 

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January... 2012... so far? Not off to a brilliant start. Feeling, truthfully, like crap most days. Last week I said we were finally all feeling better. And yet it's not quite true. 

 

I am no longer officially ill, but have been left exhausted. Feeling bone tired. I feel so weary, like my mitochondria have just said "Eh? I don't feel like pumping any energy into cells today." and gone off to do something else. Fishing?

I literally cannot keep my eyes open, cannot drag my ass off the sofa to do much. I rally for an hour here, an hour there. The kids are fed and shuttled about. But the weekends are killing me because there is no school to keep them occupied so it's all on me & we are not going out to do anything more than the minimum and I hate being THAT mom, the lazy-ass mom. Which i have been nearly all month.

And there is SO much to do this month. LTYM-NYC is heating up. Summer needs to be planned - camps & the like. I have my first sponsored post & giveaway (almost like a "real" mommy-blogger!) going up tomorrow or the next day. And to do that one? I am composting, folks. Yes, right here in New York City. And no my kitchen doesn't smell like rotting produce, thank goodness.

And amidst all the angst and feeling so low - How much is physical, how much is emotional/depression?  DAMNED if i know! - I have to keep reminding myself to count my blessings. And there are some.

Jake is really growing and changing again this month. It was a rough start. The first 2 weeks of the new year held nearly nightly crying jag / meltdowns. But he is talking and interacting more than ever.  He practices conversation with me, the cat and his stuffed bear. Hopefully soon there will be real friends.

 

Tonight when I sat with him in the bathroom while he took his bath, he wanted to talk and talk and talk. His usual topics: what did my ear look like, what are the shapes of my eyes and eyebrows and head. How he was once a baby and will grow to be a man, how his hair is yellow-blond but mine is red-brown.  But still, there was more expansive language. The eye contact was full on and awesome.

The light in his eyes was fully on, his delight in talking with me, in the back and forth of our conversation was clearly evident, infectious. 

 

It is so easy to despair, to see how far he has to go. The progress is so glacial, so frustratingly  incremental that i have to make myself stop and look at where he has come from... So far! I need to close my eyes and remember back to when I questioned if he would ever be able to carry on a conversation of any sort, when he seemed so lost in his own world.

And so when I am getting all judgey with myself, when i feel like I have just lost all my mojo, that I am merely getting through the days, I need to hold on to this: My kids are thriving. And maybe it's in spite of me right now, but still, I'll take what I can get.

Reasonably happy kids = not sucktastic at all. And hopefully I can join them there soon.

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Sorry I'm still in the cave here, folks. Hopefully the grateful cancels out the whining.
 
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.

Friday? Really?

(This photo has nothing to do with anything in this post.)

Today is Friday? Really?

How did that happen? It was just Monday, like, 10 minutes ago.

Wasn't it?

No?

(Insert much cursing here, especially the word that is alliterative with the day of the week it actually is today.)

I have gotten nothing done. NOTHING.

I've been sick as a dog all week.

A few different things all converging.

Including - TMI WARNING: LOOK AWAY IF YOU DON'T WANT TO HEAR ABOUT GIRL-PART RELATED THINGS - my first period in 3 months that came on like gang-busters and has knocked me completely on my ass for 3 days. I know last year I told you all I thought maybe I was done with all this.

Not quite.

Instead I've been continuing on, regularly irregular, for the past year.

Fun. (Not.)

And today Ethan was home sick, too, with the same sore-throat-voice-stealing-nasty-cold I've got.

So I have had to scrape myself off the sofa to bring care and comfort to him all day. Because sick kids need their Mom. Right?

And while sometimes I find hard times inspirational? Not this week. This week I have had neither the energy nor motivation to write anything.

I feel lumpen.

Completely.

And yet my blog is staring at me, glaring at me, with a Monday date on my last post. 

(Insert more cursing here.)

I got... nothing.

And not the wonderful nothing like my friend Neil's amazing post last week.

Serious nothing.

(Although I have stolen a page from him and included an instagram photo since I figure if I've given you nothing really to read I should at least give you something semi-interesting to look at.)

My mojo is missing.

My lyricism has left the building.

But I am feeling sad in the silence.

I miss you guys.

Even if I have nothing more to say than: Hello. I'm still here. I'll pull through this all, and hopefully be back sometime soon with words wiser and worth reading.

And until then?

(Insert more cursing here.)


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SOC Sunday: MIA via ASD

It's been a long time since I have hooked up with Fadra's SOC Sunday meme. I head over to catch today's link and what do I find? A beautiful new logo!

Thank goodness for SOC Sunday. Because that's about I can manage today. And barely that.

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I feel hollow, scooped out; a brittle husk surrounding a great nothingness. And not the lovely nothing of Zen but the bleak nothing of having been shaved away until there is very little left, just a concave space surrounded by little curled up, crumbling bits of me.

I have been AWOL from my blog for 3 days now, the longest gap in a long time. Three days ago I started a post called "Another Day, Another (Autistic) Meltdown" trying to find the gallows humor in what I've been going through this week. But it just didn't come. I couldn't laugh. And I was tired of crying.

Jake has not been a very tantrummy kid. Until now. He's going through something. God knows what. Hyper-emotional. Is it the ugly middle stage of some forward progress, or his medication in need of tweaking? How can I know - they often look the same from here.

All I know is that for the last week, nearly EVERY evening (and some daytimes too) there is about an hour of crying and screaming. Because I have done something HORRIBLE like turned off the TV. And yes that's only one hour out of twenty four, but what it does is suck the life and energy out of the other 23 for me.

I;m really being unraveled by it. And i feel like a wimp, like a wussy because some families with autistic kids have been going thorough tihs for YEARS on end. And multiple hours / incidents per day, day in and day out. While I know (hope & pray, but mostly know because it has happened before) that this will pass here in our home, waiting it out is exhausting me.

Jacob WILL find his even keel, his usual sunny disposition will right himself once again. Because when he is not weeping he is still happy as a hundred proverbial clams, chatting away, demanding as usual I "Look Mommy!" at everything he is doing and listen to every thought that floats through his brain.

"Daddy is a man, Mommy"

"Why yes, yes he is, Jacob."

"He was a baby!"

"Yes, he was, Jacob. We were all babies once, that's how human beings - people - start out. Me, Daddy, you too. you and Ethan."

"I was a baby!"

"Yes, Jacob, a beautiful baby. And now you're my wonderful, big boy."

(SIGH)

And so it goes.

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Still here? You've a brave soul.  Thanks for making it through the cave with me. And there's a reward: Tomorrow's post is funny, funny I tell ya!
 
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.

SOC Sunday: Nothing

No intro, this week, this just is what it is....

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It's late on Sunday night, and I must admit, I got nothing for you. Four days of Thanksgiving "break" this week have nearly done me in. We had a very full Thursday and Friday and then a nearly empty Saturday & Sunday. Because all of Ethan's friends were away or otherwise busy, he had no playdates and was miserable. Jake spent far too much time on his DS and both kids spent far too much time watching TV. But somehow we survived.

And I would normally just have skipped posting today, but its so close to the end of NaBloPoMo I am not going to stumble and fall mere yards from the finish line. So yeah, I'm picking up that "marathon" metaphor I nearly beat to death in a post comparing special needs parenting to running a marathon at the beginning of this month, and running further with it tonight.

I was hoping I would feel more up, less beaten down by now. Ha! And this is making me realize I need to figure something out before the Winter / New Year's break is upon us, because 10 days cooped up in the apartment with the boys cranky and fighting and glued to loud screens will drive me over the edge.

I might have to take up running - the kind like in the old joke: "Doctor you told me to run 5 miles a day? Yes... well, It's been a week and I'm now 35 miles from home, what do I do?" Because right now 35 miles from home and on my own sounds like heaven.

Of course perspective will return when I've gotten the kids sent off to school and I can go home and get things for me done again... but Oh, Crap, I just remembered I have to take my mother to a doctor's appointment at 11AM tomorrow.

So much for me time.

and so it goes.....

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

• 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.

One day down

I have come to realize, in hindsight, that life was much easier when the boys were little, when we could just toss them into the double stroller, or later. load up the big backpack and grab the park-toy-bag and head out the door to the local playground and lawn, just across the street from our apartment building.

The boys would run around, play, have a great time. Ethan would find a friend or make a new one and Jake was happy to play by himself exploring his sensory environment, digging in the sand, delighted by the sprinkler or entranced and soothed by the motion of the swings,

Sidewalk chalk, bubbles, rocket balloons, sand toys, bouncy balls of various colors and sizes, juice boxes and crunchy snacks: all we needed for happiness.

They are growing up, and there's nothing I can do to stop it.

I really knew how to parent little kids, I had it down pat, or at least was faking it well enough for us to roll along merrily, even with autism aboard.

But now? Oh, man is it complicated. Way too complicated.

Ethan is so social, is desperate to spend all his time with his friends, playing elaborate games with them, involving 10,000 characters with Japanimated names like "Flareon."

And Jake? Wants desperately to play, to interact with other kids, but has one, just ONE, who will give him the time of day. And she's the baby sister of a friend of Ethan's. And, at four, will soon grow too old to play with odd, older boys like Jake.

Managing their social time is complicated. Sometimes impossible. Like today.

Because today was another dreaded school holiday. The first day of an equally dreaded three-day-weekend. And while I had planned and managed Election Day well, filled Ethan's time, made a fun day of it, today was a total mom-fail. I miscalculated, thought I could pick up some mates for Ethan last minute. Big no-go. Everyone was away or busy (scouting friends marching in the Veteran's Day parade, even).

After a too-brief playtime with the upstairs neighbor boys in the morning before they took off early for a long weekend out of town, it was just the brothers, together. All. day. long.

With a tired Mom who had whanged her elbow badly on Wednesday evening and was icing and babying it all day, fairly miserable on strong anti-inflammatory medication and very little sleep (last night, every time I adjusted my sleeping body I hurt my elbow and woke up).

Taking them out somewhere would have been a huge endeavor, fraught with the need to ward off many incidents of near-fratricide; possible multiple swear words being invoked when one of the boys inevitably banged into my tender, throbbing left elbow.

So we spent the whole day inside, the boys attached to their various beloved screens of many colors with loud noises. Me attached to my ice pack and computer, naps snatched when I could.

And then this evening I was able to pack them off for dinner and a movie with friends (yes, Jake's one friend) at THEIR apartment, got a two hour respite. Whoo-hoo!

If I could arrange for a week to take place between today and tomorrow, a week out of time where I could sit on a beach, get a daily massage, drink pink things with tiny umbrellas, read a novel start to finish with minimal interruptions, sleep, sleep, sleep - THEN I would feel ready for the rest of the weekend.

But something tells me that's not likely to happen in this, my non-science-fiction real life.  No one is lending me their TARDIS. So I guess I'm just going to have to just suck it up and forge ahead.

One day down, two to go. 


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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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Sand Trap Weekend

This weekend I spent too much time caught in the sand trap, mourning the family I thought I should have instead of enjoying the one that I actually do.

And, truth to tell, it's pretty hard to enjoy my family right now.

Jacob is getting on Ethan's every last nerve, every minute of the day they are together. And Ethan is being mean to his brother. And there's only so much I can do.

One has Autism and the other doesn't. It is what it is.

I fled the coop for 4 hours on Sunday afternoon to attend a family event (for my husband's family, so he couldn't say no to watching the boys for the afternoon) and the boys just sat around the apartment with screens of various sorts on a beautiful day.

I tried, I tried, really I tried to get Ethan a playdate for the afternoon, but it didn't pan out, so our wonderful upstairs neighbors (who have nearly adopted the boy) having other plans, deposited him back home at 2:30, and the idea of going anywhere with his brother brought tears and moans and groans of "I HATE him, he ruins EVERYTHING mom!"

So there I was at a lovely old world, old school, top tier French restaurant in NYC eating and drinking up a storm with the female contingent of my husband's large and embracing, enveloping family (we affectionately call them the Borg Collective for a reason) but still fielding phone calls from home, pulled in two directions and fully present in neither.

My usual state.

This weekend I struggled to be a good enough mother. Struggled and failed. I didn't have the energy, the herculean energy it takes to pull on the happy face and make fun happen for our family.

We used to be able to just roll out and spend the day together. Jake was a bit odd, but often lost in his own internal little world. We had to make sure he didn't wander off, but for a spectrum kid he was pretty easy to take out into the world.

But now that he wants to interact and talk all the time, he requires a lot more energy and focus. He still loves going out, but now I have to be completely vigilant, to keep him from going up to everyone he sees and starting strange conversations.  And he so drives his brother 'round the bend.

I am sure some day Ethan will develop more distance, more compassion, but right now he is all rage and annoyance. And I don't want to be here in the middle of it. Not at all, not even for one minute of it.

And so I dread the weekends. I get a stone in the pit of my stomach as 3:45 pm on Friday rolls around, knowing  the boys are mine and more or less together until 6:45 am on Monday.

I ask too much from my friends, the mothers of Ethan's friends. I am always foisting him off on them. And if those kids want to come over, we're really limited to the ones with high tolerance for Jacob.

I am tired of whining about this, tired of complaining. Also I am worried that I am making my wonderful son Jacob sound like a burden, which he never is.  He is lively and delightful and full of light. But exhausting. Yes exhausting, always, too.

And the biggest issue is the dynamics between the two, so far from healed, so far from resolved. Maybe worse now than it's ever been, I can't really tell, I have no perspective.

So I separate and separate and separate some more, as much as I can. And still at bedtime tonight Ethan asks when we'll make enough money so we can get a bigger apartment and he can have his own room, asks if I could send Jacob away for a day "Send him on a trip to D.C., Mom." so he and I can have a day together, at home just us "because I almost never get time at home without Jacob around. "

And also the separateness feels just too separate, feels like individuals and not a family. I want a family unit, damn it, something that feels cohesive and whole. Not just this hole in my heart. Not a big one, but a small one, drippity leaking, draining the joy out drop by drop.

It's 4 am and I have not gone to bed yet. Sitting here ruminating and writing. Because if you don't go to bed, tomorrow never comes, right?

Damn, got that wrong too.

And I'm linking this up with Heather's "Just Write" Tuesdays meme at The Extraordinary Ordinary, even though it's not the lovely little slice of life I wanted to write tonight. Oh, well.


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Not my best

I am having a really hard time this week. A really, really hard time.

It's a limbo week, and that's where I am. Feeling stuck and rudderless in every way imaginable. This is the last full week of "summer vacation" and we have no plans and I have no spontaneity left in me. I was going to try to find somewhere for us to go this week, last minute and depending how we all felt.

We had some options: Vermont to my cousins, a few mid-week days at the beach. But I hadn't counted on Irene and her aftermath. Or on how much my boys after their first week away at sleep-away camp would want to just go home so much. To be, in fact, desperate for HOME.

So here we are.

I have mountains of laundry and unpacking to do, which I am way too slowly working my way through, thoroughly unmotivated but tired of looking at the suitcases in my living room.

And I am so not doing my best mothering right now, finding my boys on these beautiful last summer days mostly inside: one on the Wii, the other on the computer. We live in New York City. I can't just toss them out into the backyard. There IS no backyard.

And I'm on the computer, too. But I'm not writing as I need to, just aimlessly surfing and noting how many more comments and readers other bloggers have. Those by now completely irrelevant BlogHer recap posts that are almost but not quite done? Still undone. I just don't have it in me to finish them.

Until the upstairs neighbors came home late yesterday all of Ethan's friends were out of town. Jake still has no friends. (And I feel sad and guilty beyond guilt that I haven't been able to do anything about that yet.) So playdates aren't happening.

And the two of them together are just awful right now. Awful. Jake in Ethan's face, talking non-stop. Ethan screaming at his brother to shut up and leave him alone. So separate screens is the best I can do right now. Sigh. Biggest sigh ever.

And I am feeling how much this is not how I wanted to parent. I always pictured us as a minimal TV home. Envisioned myself to be the mother leading her kids on nature hikes, visits to the zoo, days at the beach, rainy afternoons spent painting and sculpting, reading books, exploring the city's museums together. Hanging out with other families, frolicking.

But then again I didn't count on autism, and boys who fight all the time, and my utter exhaustion.

When friends write about how they wish they had another week of summer and how much they are enjoying this relaxed time with their kids it just hammers at my heart. Because that is how I want to feel, it's how I expected I would feel. I DO love my time with my kids but individually, because going out or doing anything with them together is. just. awful.

And we are all together 24/7 until school starts right now. And I don't know how I'm going to make it another week and a day.

So I am one of THOSE moms, desperately waiting for school to start (Thursday the 8th for Ethan, Monday the 12th for Jake). And I hate that. I hate feeling this way.

And it's so my instinct is to hide when I feel like this, to disappear. And that's what I was planning to do. But then in my surfing this morning I saw all the tweets about folks who had linked up their posts with (this week's SNSS guest) Shell's "Pour Your Heart Out" linky.

And then I remembered that amazing fact that Aunt Becky had recently written about in a post, how writing actually helps us heal.

And then I thought "I'm a blogger, Damn it! I'm not going to curl up inside myself and hide away, I'm going to write about it."

So here's my ugly, all splayed out on the page... screen... whatever. It's not my best post. But it's all I've got today. So it will have to do.

(P.S. Updated this afternoon: It worked! Feeling much better now, about to drag the kids out to the park. )

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


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SOC Monday (oops): Going Nowhere

Well, I'm a day late with this thing, but it's Memorial Day Weekend and so Monday feels like Sunday, no? That's my story and I'm sticking to it. It couldn't be that I'm just having such damn trouble getting anything done these days, no that's not it at all....

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We went nowhere this Memorial Day weekend. We being the kids and I. My husband went somewhere. he is in Milan. MILAN, people, as in Italy.

But he is working his ass off there, teaching an intensive class. So i can't really resent that he is in ITALY while i am alone in New york City in a beastly heat wave ALONE with the boys and nothing to do, nowhere to go, now can I, much?

I used to go places. I used to travel the country and the world on shoots, with plays, for film festivals. sometimes even just for fun.

I miss it, people.

My passport has expired. Ten years. Ten years since I've left the country. I don't do that work anymore. We don;t have the money to travel for fun.

And the kids? Are an odd combination of tough and easy travelers. They were real troopers on our recent sojourn to Lowell, Mass. for their cousin Greta's Bat Mitzvah (post on that in process, coming soon). but its still a hell of a lot of work for me to haul them anywhere.

I wrote a post about the physical (and emotional) baggage that comes along with taking Jake out. And i know that he's actually a fairly "easy" kid on the spectrum ,that there art people who literally CAN NOT go anywhere as a family. I am grateful that we are not on that sort of plane of existence.

But still, the big problem is.. we have nowhere to go. I can't just go somewhere, me and the boys - the two of them don't get along well enough to be alone together in tight quarters for days on end. In our home its bad enough, but without our computers and thousand toys  yikes! Plus Ethan has playdates here.

But going away with others? well, let's just say the invitations to stay with friends with country homes? Just don;t roll in. My close friends love Jake, always tell me how amazing he is, but Jake for the whole weekend? would give anybody pause. Means it will not be quiet and restful for anyone in that house. even my friends who love Jake to death? They have husbands who have not signed on for autism. 

I don't know any families with autistic kids who get invited away for weekends. (And Ethan is a handful in his own way, too.) And also many of my closest friends? don't have summer houses anyway, are trolling for their own invites.

So we puttered around the city, went to movies, swam in a ridiculously overcrowded city pool (boys loved it anyway) ate too much junkfood, spent too much time on videogames/computers, had a bunch of playdates.

It was a pleasant, not dreadful, weekend. I am now completely exhausted, and have a week ahead of me I do NOT look forward to - dealing with my mother's 19 year old about to die cat who has become incontinent and will likely need to be put to sleep.

But still, it would have been nice to be able to go away somewhere. I miss vacations, travel, excitement.  I would like to be in Milan.

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Oh, I am so sorry. Was not intending this one to be a whiny rant, but that's where it went anyway. I'm tired of being tired, folks. I'm feeling mighty short on wit these days, sorry. I will try to return to witty or lyrical or something else soon. 

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 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.

SOC Sunday: Cumulative Stress

Been Sunday for many hours now and I've been trying to drum up two brain cells to rub together to write my SOC Sunday post. Finally: one boy is asleep and the other is enthralled by the Basketball game. There is food in my stomach and I *think* I may be able to locate my brain if I try really, really hard. Here goes.... 

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Sorry folks, I know this is not going to be the world's most pleasant stream of consciousness post when the phrase that pops right into my head as soon as I sit down to write is:

"Cumulative stress"

Because that's my theme song these days. As in: when asked how I am and I give a lukewarm "OK, I guess" and then am pressed for details and there's no one thing I can name, no BAD EVENT, it's just..."cumulative stress."

As in: I just tweeted "Cumulative stress has just worn me down to a nubbin."

As in: 8 years of living with autism = 8 years of cumulative stress.

And yes, I got away last weekend and it was lovely but it was 2 and a half days. and even though I was away? I was still the one in charge of my kids - I got 10 calls a day, had to track down a playdate connection, had to keep popping out of my seminar to make sure that my babysitter  and my friend's babysitter had figured out how to hook up.

Had to plan all the meals and spend hours before I left doing Jake's vitamin pours, so while my body had a break, my brain was still at least a little bit hooked in to the family the whole time.

And so there is no such thing as a 100% break for me, because at eight and a half years old, Jacob is still, essentially, a 3 year old. He must be watched and cared for; cannot yet explain what he wants and doesn't want clearly enough, cannot advocate for himself effectively in any meaningful way.

Ethan? I could walk away from for a whole weekend and beside two or three "I love you" phone calls, i know he'll be fine. I had set up playdates, including a sleepover. I knew he would inform his Dad  or whoever else was looking out for him at that moment what and when he eats, etc. etc.

But Jacob? Still needs the tending and THINKING FOR a young child needs. and 8 and a half years of that has... worn me down to a nubbin.

I feel i can;t think clearly, I know my mind is running more circularly than it should. I need a REAL break, a complete vacation.

I want my old brain back, the sharp one I had before I had children, before I turned 50 and stopped sleeping.

sorry for my umpteenth whiny rant. But that's the consciousness that streams forth from me right now.

Hope your weekend was sunnier.

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I originally wanted to call this post "Attempting to pull my head out of my own ass" but figured the good-taste police would come get me. And then I was going to call it "Have you Seen My Brain?" but that was just too cute. So then I just said "screw it" to the witty title search, went with the basics.

Also I have a FUNNY POST all set to go up tomorrow. Really. I promise it won't be all whiny rants, so come back tomorrow, don't give up on me, OK?

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 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.

Stream of Consciousness Sunday: Mayday! Mayday!

Sunday, bloody Sunday. It's May Day. But for me? Mayday!

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I don't want to talk about it. 

But I'm a blogger, a committed over-sharer. It's my "job" to lay my guts all out here: the good, the bad and the fugly. And I?  Am not doing well these days. 

I thought March would be my crap month and as the calendar page flipped into April the fog would lift, that I would just walk away from the doom and gloom of the "Month of Death" and the sun would break through the clouds and the birds would chirp and I'd be back to my old chipper self, the one my friends say to, admiringly: "I don't know how you do it, how you have such a positive attitude in spite of allthe crap in your life, how you're just so up for adventure, how you just pack those boys up and head out into the world, willy, nilly."

But lately, I can't find her. I am not myself. the intersection of ADD and depresion is somehting ugly and I am finding myself there. It's been a long time. And I have to pull out of it fast, becasue it's not just me who suffers this time, 

I have kids. (um, yeah, you know that) And when I can't get myself dressed until 4 PM, can't get us out of the house on a beautiful spring day, THEY suffer. Because they can't/don't play together (because of the stupid fucking autism). and we live in the city, I can't just toss them out into the backyard, tell them to play with the neighbors.

SO they are in separate rooms, watching TV and on the computer and playing their DSes and waiting for Mom to take them out or make a thousand phone calls to set up a playdate for ethan and I am just spinning my wheels and digging deeper and deeper in my rut, feeling overwhelmed by everything, and feeling like the worst mother in the world.  (which I know I am not, I am feeding and caring for them and talking to them -- just not providing much adventure and excitement right now)

And I kept thinking: tomorrow I'll wake up feeling better, be back to my old self. But its just not happening. I have to deal with this. Get help. the ship is sinking and it's time I figured out how to man the life boats.

And I don't want you to know about it, want you to keep thinking I'm amazing, perfect (ahem).  But I've written this now, haven't I... so the jig is up. Damn!

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Oh, this ain't an easy one to hit the "publish" button on, is it? So I better do it, quick...  (And yeah, that was probably a little over 5 minutes again today. Sorry.)

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 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.

Stream of Consciousness Sunday: Newsflash: Jacob is Still Autistic

Still Sunday. Barely. No intro. Here it is:

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Jacob is clearly still on my mind these days (see last week's SOCS). And I am really bumping up hard against the wall of sadness right now.

Today he went to a birthday party for one of his classmates, and it was way the hell out in the middle of no where in Staten Island and we got thoroughly lost on the way there, but eventually did arrive. and it was just Jake & me because Ethan wouldn't be caught dead with his brother today.

And he was a little disoriented because it was and wasn't like the  Chuck E. Cheese in our neighborhood that we go to regularly.  And even though we were at a party of Special Ed, kids Jake was still way more out of it than the others, less connected, less THERE.

And it hit me in the chest today, that at almost 9, my son is looking more, rather than less autistic.  And his development veers further off form Ethan's. And the shit that you can wave off because he's little and little kids do goofy stuff, well... Not so much anymore.

Now wherever we go, if he is in his "quiet mode" (which despite my complaining that he talks all the time does happen)  when people hear me talk to my son, they look at me like "why are you talking to that big kid as if he's still a little kid" but then when he starts to talk and is clearly too loud, too repetitive, too sing-song-y, too simple in his speech for a kid his age they get it.

And then there's "the look". which I just can't take anymore. Sometimes its sympathy and sometimes its pity and sometimes its "Oh, no this is one of those kids, I hope they get off the damn bus soon"

I really am thinking of getting him a t-shirt... maybe one of those "I am autistic. What's YOUR excuse." or "Please be nice to my mom, I have autism" ones?

Because I was getting way too much of "the look" in the women's room at CEC today. And I almost said out loud into the room where nobody said anything to me but I could feel the ice daggers coming out of people's brains "Because he's too autistic to send into the men's room by himself, OK?"

And because I am just so tired of being grim here... here's a bit of levity form my other son:

Ethan tonight was being giddy in the bathroom at bedtime, getting silly and I just didn’t have the energy for it.

Me: ”Ethan, I really hope you’re not going to be a pain in the butt to put to bed tonight.” Ethan: “Well, Mom you know we can’t get everything we wish for, right?”

Smart ass.

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Yeah, that was probably a little over 5 minutes again today. So sue me.

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 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.

Every day is Autism Awareness Day 'round these parts

Here is my beautiful son, Jacob. He has Autism:

There, so now you are aware.

OK, as you (hopefully) know, today, April 1st is the kick-off of the very official (and alliterative) sounding: Autism Awareness Month, with tomorrow, April 2nd being World Autism Awareness Day. Well now, that's starting to be a mouthful.

Rumor has it they were originally going set the big "Day" for April 1st, to coincide with the month's kick-off, but then some wise person realized it might be a tad um, cruel? ironic? to have that fall on April Fool's Day. Ya Think?

But around here? Well every day is really about Autism Awareness now, isn't it?

There isn't a day that goes by that I'm not acutely, astoundingly, profoundly and matter-of-factly aware of my son Jacob's autism.

You would think that by now it would seem to be old hat, taken for granted, a given. And in some ways it is;  just Jakey being Jakey.

But this, too: as the boys get older and as the ways that I parent, talk to and interact with Jacob and his (mostly) neuro-typical (NT) twin brother, Ethan, grow more and more disparate?  I am strangely growing more aware of Jake's autism day-to-day, rather than less. Go figure.

The fact that it really isn't going to go away, he really isn't growing out of it, and that this Autism Mom thing is rather surely a lifetime gig? Starting to settle into my consciousness about now, now that he is eight and a half and perched on the edge of little boy becoming big boy, soon to morph into teendom.

I might remember to wear blue today, I might not. I am not in a place to make big promises.

Why is blue now the official color of autism, anyway? (I thought it was "Rainbow Puzzle.") Well... I know some people think it's because that's the color of Autism Speaks logo, but I like to think it's blue from autistic author Daniel Tammet's lovely book "Born on a Blue Day."  Because I really like what Autistic folks have to say, themselves, about themselves and how they experience their neurodiverse brains.

Well, there is a lot of wonderful going on right now...

Buildings are being lit up blue for WAAD. (I'm just not typing the whole thing out each time, OK, you all know what I'm talking about, yes?) The amazing Jess of diary of a mom has been one of those spearheading a campaign to light the White House blue.

Alysia of Try Defying Gravity got Parents Magazine to post autism family stories on their blog all month long starting with hers, today!

Just about every autism blogger I know -- and we are many, a veritable small (and feisty) army -- is posting about it, embracing the blue or explaining why they're not.

I felt I should do one of two things... write another "important, big thoughts" post about autism like this one: From Autist to Artist  or this one: The Beauty of Each, Our Every Child.
 
Or, on the other hand, I thought I might write a moving tribute to my beautiful son Jacob, celebrate his specialness, the gift that he is in our lives, a balanced view of the joy and the struggles....

But, ahhhhhh, crap, that was just not to be. I've had sick kids home from school (one or both) for three days now. My heart is just not into it. I want to burrow inward, not expand outward.

I am sleeping neither well nor enough. In short: I am really worn out, worn thin. (My soul that is, my body... due to stress eating... thin not the operative word here.)

I feel light-years away from brilliance, from inspiring anyone, least of all myself.

I am so glad that I started the Special Needs Sibling Saturdays guest post series, and have some amazing posts queued up in the hopper, so that at least something useful and wonderful will appear here every Saturday for the next month, and beyond.

And yet, I feel like I have no good excuse for this. There is no one thing, nothing particularly, specifically going wrong in my life.

It's just the cumulative stress; the day in day out, never a day off, never turning the reins over to someone else, never catching my breath before running off to the next mini-crisis, never just turning my responsible brain off even if I have handed a few tasks over to someone else.

I am feeling crushed, not by a boulder but under the million pebbles, the aggregated weight of being a special needs parent, of autism, today.

And I so didn't want this to be the story I told today.  I want to tell you all about the beauty of my son Jacob, who is on the autism spectrum... or has autism... or is autistic or... I don't know what's the "correct" way to phrase it anymore.

My friend Peter, who is himself on the spectrum with NVLD has a son who is likewise "on the spectrum" somewhere but without a clear diagnostic label.  What he says about his son is: "G" has a 100% diagnosis... of being "G."  And some days that's what I want to say about Jake.

Jacob is... Jacob. Unique and beautiful.  My autistic snowflake.

OK, I know I'm rambling now. Some days I like to ramble, to explore my brain, where my tangled thoughts take me. Today I just feel lost, unfocused.  But today, this will just have to do.

This is me, this is my (ADD-rific) brain, this is my family, with autism. Messy, but hanging in there.

Here is my beautiful son, Jacob. His favorite color is yellow. He has Autism:

There, so now you are aware.



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Stream of Consciousness Sunday: Bloggy Blues

Sunday, how did you come around so fast?  WTF?  A week, really?  OK, if you say so... (I must be getting old, this time speeding up thing is getting really out of hand.)

OK, I'm going to stop promising "no more whining" like I did here last week.  Because you know it's going to happen again.  Like today.  Sorry I feel like crap.  I can't WAIT to be off the antibiotics, they really do mess with my head.

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I've been suffering bouts of blog envy lately, and I really don't like feeling that way. You know the "why does she have 1500 followers and get 100 comments on every post when I only have 170 and usually only get a handful of comments and she's been blogging for less time than I have" thing. Sigh. Resisting the urge to try to change my blog or my voice to become more "popular." time to shake my head clear and get over THAT.

And the funny thing is that while I've been running all over the internet reading other people's blogs and comparing myself to them? I haven't been doing what I love best, which is writing. My own stuff. DUH.

So I’m unhappy. That I’m not writing. So what do I do? Do I write? DUH, that would make sense, so no… Read more other peoples stuff. Go on Twitter and listen in on other peoples scintillating conversations and not join in but feel bad I’m not included. Check my sitemeter every 5 minutes and feel bad no one new came. Oh, someone came, but they stayed for less than a minute. Why do I do this to myself?

And thank goodness I got my period Friday night (sorry for the TMI, guy readers of which I have maybe 10) because that helped explain some of my blues.  I call the down day or 2 before the event my “seeing the world through shit-colored glasses” time.

And when I feel like this? Five minutes with the kids exhausts me. And don’t you know it’s school vacation week! And I would be looking forward to spending time with the kids, if we all could do the same fun things, if my kids actually enjoyed being with each other.

Actually that’s not the problem. Jacob loves being with Ethan, wants to play together all the time.  Ethan would prefer for his twin brother to be swallowed by a black hole never to reappear again. And I have a week of this to look forward to: Jacob pleading and pining and Ethan yelling and rejecting, unless I separate them, but there are two of them and only one me.

So I guess maybe this is also why I have been tiptoeing a little too much through the tulips of other people’s bloggy lives, and obsessing about truly meaningless trivial things like my blog stats lately: Escape baby, escape from the crap that is my life. Sigh.

Time to catch an hour of sleep before Sunday with the kids is upon me. I love them, I do, I just wish family time existed in any sort of easy way right now. And can I add?? Autism sucks!

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That's all, folks! 

New to Stream of Consciousness Sundays?  Here's the skinny:

• 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 link and let's hear your 5 (or so) 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.

Stream of Consciousness Sunday: Anti-life

Sunday!  Again!  Time for the wonderful:

OK, sorry for this one, folks.  Please forgive just one more whiny rant. Then I am DONE!

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"Antibiotics" means anti-life. and I don't take them often (less than once a year) and I hate talking them, but when they're necessary they make all the difference in the world.

How much do I hate how much I have been whining and whingeing on my blog lately, going on & on about how awful I feel? a LOT. I apologize. I don;t like being a whiney whiner. It is just the convergence of so much crap.

Just as I was FINALLy feeling about 90% recovered from my January's gall bladder surgery? I came down with a stupid head cold. It seemed like nothing much at first, annoying, but then instead of getting better it lingered, got worse, and I started feeling just generally awful, deeply fatigued.

I kept carrying on, and stupidly, of course, on a day I felt a little better I went out and got everything done that I had not been able to do on the down days preceding it, causing me to completely fall apart the next day. I have kids, one with autism, I have a mother who needs to go to doctors. Mom's not allowed to be sick, remember?

This past friday I FINALY hauled myself off to doctor who diagnosed me with a really nasty sinus infection PLUS bronchitis.  He was even saying things like "Wow, that's really inflamed in there!" Um, not what you really want to hear from a man with a scope up your nose. And can I say OW! that's the first time anyone ever did that to me. and? It fucking HURTS! Especially when you're infected and inflamed (Duh!)

Anyway, I'm on this really nasty heavy duty antibiotic (Levaquin if you must know). I HATE this antibiotic passionately. It is anti-life. And the crazy thing? I ASKED for it. I said to the doctor: let's pretend you gave me a Z-pack and I took it and then started feeling better but as soon as it was two days past my last dose I strted feeling worse again and came back to you and then you prescribed the evil but effective Levaquin.  Let's just skip that whole first part and cut to the chase, give me the bad shit.

(OK I didn't say "shit" to the Doctor, just thought it loudly) Because Levaquin, for me?  It completely knocks me on my ass with intense fatigue, constant low-grade nausea and  dizziness / wooziness. And did I mention how expensive it is? $13 dollars a PILL is my CO-PAY.  But also?  It fucking works. (It also, apparently, causes me to curse much more frequently in my blog than usual, sorry!)

SO this is my LAST whiny rant about feeling like shit.  Even if I keel over tomorrow, I won't blog about it - promise!

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OK, I went a little over 5 minutes. So sue me. 

Also?  Did I mention that it's 6 AM and I have not really been to bed. Because besides knocking me on my ass?  This antibiotic also makes me wired and jittery.

So the 2 hours of sleep I got sitting up on the sofa is all I'm getting tonight.  So it's going to be FUN being me (or married to me) today.

Cheers, folks! 

New to Stream of Consciousness Sundays?  Here's the beef:

• 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 link and let's hear your 5 (or so) minutes of brilliance...