Nearly There

It's official.

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

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

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

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

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

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

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

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

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

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

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

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

G'night all.


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Bits and Pieces

Folks? I just don't have a coherent post in me.

Preparing for the launch of Special Needs Sibling Saturdays, writing yet another memorial post for my late father's upcoming 94th Birthday, and having another fictional voice pop into my head and demand to be heard and written about for this week's Red Writing Hood prompt have left me written out.

Add to that real life, with two (SN) kids, an elderly mother, a husband and a cat to care for, and I'm just plain wrung out, too.

And yet here sits my blog with nothing happening on it since last Saturday. I'm watching the tumbleweeds rolling down main street, and none too pleased about it.

Nothing majorly newsworthy going on in my life, but I have little bitty somethings jotted down here and there, bits and pieces that I would love to just throw up here... wait, that's not *quite* the image I wanted to project. Let's just say that while it's not Friday, I'm doing a "Fragments" post today, anyway.

So herewith follow some little snippets I've written that don't quite have enough gravy or gravits on their own to expand into a full blown post, but are too convoluted or substantial to wrap up in 140 characters to tweet out on Twitter...
 

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The other night, apropos of nothing, but everything, Ethan blurted out: "I really miss Grandpa Jim, I wish he were still alive, he was a lefty like me." He then asked for a big lap hug.

While curled up together on the sofa, Ethan proceeded to tell me that he knew how much Grandpa loved him and how unfair it was that he had died while he (Ethan) was still so young. He even cried a little. Way to break my heart, kid.

I hugged him close and confirmed how very much his Grandpa had loved him, was proud of him, and ever so grateful to have another southpaw in the family.

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Jacob... Jacob... Jacob.  Jacob is going through... something... right now.

We're tinkering with his medications and supplements. Not found the magic formula yet. A new medication that we had thought might really be wonderful for him, help him to focus? Instead induced some mild mania. Damn. He started being difficult to put to bed, woke up before 6 AM. Every day.

And did I mention he was on this over the February "break."  Yeah.  *That* was fun.

He was just getting over that when we hit... The Time Change. Which I am beginning to think is an evil conspiracy against people with autism & their parents, not just an unfortunate twice yearly event.

Jake laughed maniacally in his bed for 1/2 hour each night and was impossible to wake up in the AM. Things have nearly settled back to "normal" which is a good thing as I am getting *really* tired of this.

The mania has tamped down, but is not 100% gone.  Jake is currently rather obsessed with a MAD TV bit: "The Fast & The Curious, starring Vin Diesel & Curious George." Yup.  He keeps thinking about it and cracking himself up. Loudly. In school, too. At least he has a sense of humor.

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I am a night writer.  My best writing... any writing that I do that is at all powerful, lyrical, evocative, my strongest pieces? Were inevitably written around 1 to 3 AM. Something just comes out from me then, in the quiet time when everyone and everything else is asleep. (Well, it *is* NYC, so not exactly *everyone* but the noise is considerably tamped down, here in my sleepy family neighborhood, the UWS.)

It's just my natural circadian rhythm, has been that way since I was a kid. The problem with being a parent and this? I can't really sleep in now, can I?  Jake's bus is coming for him at 6:45 whether I have slept or not. He needs to be up by 6 to be ready for that bus, so I have to be up at 5:45 to be ready for him.

And people? 5:45 AM? Not my natural waking time. Off by about... oh, four, five hours. Sigh. About 10 more years of this ahead of me. Minimum. Sigh. More coffee ice cream anyone?

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Ethan has a new obsession: Disney's Club Penguin, an online open ended cyber-community for the seven to ten crowd. And it's free!

Riiight. Unless you want to save stuff or acquire things that are that really cool. Then you must buy a membership. At a monthly fee that's small enough to feel insignificant but large enough to make your kid balk at spending his own hard earned allowance on it..

But your kid can play at the free level for quite a while. Until they are totally hooked and have invested time and care creating their special character.  Gotcha!
 

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Reading a friend of mine's blog about her life with her daughter with Aspergers recently, I felt an odd and uncomfortable envy. It made me think again about how hard it is for me, for my husband, for our family that the biggest manifestation of Jacob's autism is in the realm of language processing. Because the rest of our family? We are talkers.

Conversation is how we relate. We think and talk and talk and think. And talk. About everything. And Jacob is just completely left out of that. So much of my time with him is spent in silence, or listening to his relentless, repetitive questioning about whatever his currently obsessive pet subject is.  Right now it's movies and movie opening dates, or the cat.

Much of the time I try to re-direct him, work hard to steer our conversations toward any other subject.  But it's rather like steering a car with a blown tire, always pulling hard and fast to one disastrous side.

And I know that at age 4, 5, 6, when not yet capable of even this, I would have been deliriously happy to be having these "conversations" with him. But still, it's exhausting, and not very rewarding.

Especially because I am so aware of how else it might be, how a delightful conversation with an eight year old can just blossom forth.

And I know there are parents of more severe, non-verbal kids on the spectrum who would give their right arm to be having these type of annoying and inane conversations with their children.

But still, I sometimes feel I was MADE to be the mother of a precocious, ever-curious, quirky, mildly Aspergers kid because I am the repository of a thousand bits of odd and arcane knowledge.  Nothing would delight me more than spending our time together looking up all the questions that stump me. But that is just so not to be.

Also? I know there's a "grass is always greener" syndrome here, I know how much those friends and their kids also struggle, suffer; would never mean to imply they have it easier, a better life; I do not play the ranking game.  It's just that I was, myself, more like an Aspie as a kid than a PDD kid like Jake, and it seems to be just a bit more comfortable to parent kids who are more "like us." Although, of course, sometimes, so NOT.

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So it's a limbo sort of time, this late-winter, this not-quite-spring.  It has been some hard winter, and everything seems to be in retreat, just waiting for the warming. Including, it seems, my brain.

We are in a holding pattern, all of us. I have no big, brilliant thoughts coming my way; just the day to day plodding, trodding of the same earth. I just keeping on putting one foot in front of the other, and l make it through each day, one at a time. Sometimes that just has to be enough.

Spring will come. Warmth and sunshine will return to the earth. The cherry trees will blossom.

Riverside Park, April 1998

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And, because I want to leave things on a more upbeat note... the other day Ethan, trying to cheer me up, told me: "Mom, you know I hate Jacob LESS than I hate broccoli, right?"

Well, that's something, isn't it? Because he REALLY hates broccoli.



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Hanging Ten

Yesterday I was a bit of a hot mess.  I wanted to write a new blog post, because, as you may have noticed, I have written nearly every day this month. Way more than I ever have.

Maybe I'm feeling inspired by all my friends doing the NaNoWriMo or the NaBloPoMo challenges (apologies to my civilian readers, that's real insider bloggity-bloggish stuff).  Or maybe I just have bucketloads of stuff to say and am giving up unimportant things this month, like sleep.

But yesterday?  I was just all unfocused and fuzzy, like my slippers, which I almost walked out the door in that morning.

And writing?  Takes focus.  Even if it's a dreamy focus like when I'm deep in the grief and go into a fugue-ish state and the words just flood out of me like water from a cracked jug.

But tweeting?  Reading (and commenting on) OTHER people's blogs?  Perfect for ADD-rific me some days.  Like yesterday, when all my writing mojo spilled out across the internet, splashed onto other people's blogs.  I was a commenting dervish.

And then there's Twitter.  If you tweet, you understand the appeal of the fairy dust.  And if you don't?  You (probably) think I'm a twit.  Well, you're both right.  Probably.

So (focus, please, here!), yesterday, when I sat down to write, I just didn't have it in me.  I thought: "Damn, I have no words left today, I dropped them all off at other people's houses."

But you know?  Maybe I can visit them tonight, and take a picture and show you (because I am a technical genius and know how to make my Mac do screen shots) and impress you with how smart/funny/cute/ranty and... commenty I was yesterday.

And at the sheer wonderfulness of this approach?  Besides not having to write anything really coherent tonight?  I get to introduce you to some more terrific blogs and bloggers.

And also?  I'm kind of new-ish to this blogging thing, haven't even had my "bloggaversary" yet. So I don't really know what the rules of this world are, and if I'm breaking any of them by doing this bit here.

But also?  I don't really care.  I'm following one of the operational rules of my old career in TV/film production: it is often easier to ask forgiveness than permission. 

So here is me yesterday, flying in from elsewhere, inspired by the wonderful funny, smart or heartbreaking words of others to add a few of my own.  Or in my case, more than a few.  Because, as you may have noticed, I tend to be "long-form" (that's not baggage, that's just the size of my suitcase)...

First off, lets mosey on over and take a look at my early morning Twitterstream:

And then, after joking about it, I nearly did just that by accident.  Clairvoyance?

Um, I was a bit tired yesterday morning.  But also?  Somehow giggly instead of grumpy.  Thank goodness, because I really hate having a three dwarf morning.

Yeah, I'm going to win a Pulitzer with my tweets.

Well, no.  But it does help to blow off steam and let me be kind and nice mom instead of bearish snappy mom.  And THAT is most definitely a good thing.

So after dropping off the offspring and spending a few hours in Jacob-life-management mode (wherein  I inventoried and re-ordered all my son's 10,000 medicines, vitamins and nutritional supplements from 5,000 different sources, and then poured out a week's worth of his 6 different types of a daily packets of them -- don't you just wish you had my life, now?) I allowed myself a little time to surf the interwebs, visiting old friends, discovering new wonders and dropping bits of myself off, my commenty calling cards, along the way.

Yes, I know, if that sentence were any longer it would need its own zip code.  I am working hard to earn my title "Queen of the Run-on-Sentence (with parenthetical clauses)".  How am I doing?

So, back to the matter at hand.   Picture me tiptoeing through the tulips in the garden of web... looking kind of like this:

That is an illustration from the amazing Allie Brosh's blog Hyperbole and a Half.  If you ever really NEED to laugh?  Like, if your life depended on it?   Go there.

OK, so on Kris's blog Pretty All True my response to her funny/painful/honest post "Call Me" was this:

One of the (many) amazing things about Kris is that she always replies to each and every comment, often inciting layers of dialogue.  She is the most interactive blogger I know. And sometimes the comments are ALMOST more wonderful than her wonderful posts.  And best of all?  She likes me, she really likes me.  Cyber-me that is. Which is just fine.

Then I went to visit Jess's blog, a diary of a mom, and read her moving post "The Donut Shop."  Jess is an Autism Mom blogger, and this post was about how hard it is to go out to eat with her family.  But really, it was about so much more, about all the dreams you have for your family and what happens when you add Autism into the blender and hit pulverize.  Her post brought up all kinds of feelings for me, and I left this mini-rant of a comment:

And yes, I need to work on my proof-reading. That should have been "struck" not "truck."

And finally?  Yesterday was Stimey's monthly day over on the Hopeful Parents site (where I post every 10th of the month).  Stimey (real name Jean) is my web-friend and yet another Autism Mom Blogger.  She was a DC Metro area member of the defunct (and just now resurrected) Silicon Valley Moms Group blog,  a sister site to the NYC Moms Blog site I wrote for last spring.  We actually met (yes, in the real world, with our meat puppet bodies) at the BlogHer10 conference in NYC this past summer, and in fact kept bumping into each other every 5 minutes to the point where it became a running joke: "Oh, you again! Am I stalking you or are you stalking me?"

Her home blog is Stimeyland (although you can find her words all OVER the inter-webs) and she is in every way terrific (smart/funny/really real).  Her post at Hopeful Parents, called My Son Knows He Has Autism, was about how she talks with her son Jack (and whole family) openly and positively about his different brain. I read her post (and you should, too) and then left my 2 cents:

Yes, I know there's a proofreading fail in this one too. Thanks for pointing that out.

And that, my friends, is that.  Retiring my surfboard for the night before I reach too far and wipe-out.  Gonna grab a yogurt smoothie.  Take off my web-suit and excavate the sand out of my...

Ahem

Good night all, good night.

How I Survived Halloween...

Halloween 2010

I love this post title, but I have a confession to make: I don't have much at all in the way of an exciting, dramatic story to back it up.  Because the conclusion of that sentence is the very boring "...by laying low."

And I feel really disappointed in Halloween this year, mostly in myself.  We didn't go out into the world this year, not even for 10 minutes.  We stayed home.

Now, when I say "stayed home" I mean we went to the fabulous party our big kid-filled apartment building throws in the lobby every year.  

Halloween Party, 2010

And the kids trick-or-treated inside the building in full regalia, and a friend with her twins joined us.  Ethan went to the upstairs neighbors apartment in the afternoon to help them decorate their back door landing (where the trick-or-treaters come for candy).

And we did step outside.

We stood right in front of our building for two minutes so I could take pictures.  But Ethan was, shall we say, less than thrilled as he was anxious to get back inside; champing at the bit to get the trick-or-treating candy acquisition process started.

Ethan as Electabuzz (Pokemon) and Jake as Ironman

Jake on the other hand?  Really getting into character.  Maybe a little bit TOO into character.

Talk to the Iron Hand

But really, THIS year?  This was kind of lame.  Because this year Halloween fell on a Sunday.  That meant the city in general, and our kid-filled, kid-oriented, kid-friendly Upper West Side neighborhood in particular was Halloween-crazy and it would have been a blast to go out with the kids up to Broadway where all the stores were giving out candy and the sidewalks looked like a chaotically organized Halloween parade.

If you want to get a sense of how fabulous Halloween on the Upper West Side in NYC can be?  Read my friend Sandra's post about it here.  She and her family did it up righteous proper this year, her first in New York City.

In past years we have always joined in the Halloween party at Riverside Park's Hippo Playground.  It begins with a procession down the hill from the Soldiers and Sailors Monument into the park, lead by bagpipes. Then inside the playground there is more bagpiping and free donuts and cider.

Ethan the White Rhino Power Ranger and bagpiper, Halloween 2008

Jacob the Red Power Ranger comparing notes with fellow super heroes, Halloween, 2008

But that lovely mini-parade and party?  Is for little kids.  We squeezed in one final hurrah last year.  But this year, the kids are too big and that event is now deemed "for babies. "  Sigh.  Growing up they are.  (Yes, I'm channeling my inner Yoda in the syntax department. Wanna make something of it?)

We had planned to go out and about in the city as a family; trick-or-treat on Broadway, visit some or those fabulous, famous, blocked-off Halloween Block Party blocks, maybe meet up with some friends.  But my husband wasn't feeling well, and is not a crowd person on his best days.  And I just couldn't face managing an over-excited  Jacob and the Ethan/Jacob dynamic in a crazy crowded scene alone.  Other times I might have been game, but this year, right now?  I am just managing to stay afloat on ordinary days, so no, I took a pass on that one.

Also?  Ethan's home made costume was MUCH more time consuming to make than I had counted on, and I was still finishing and finishing, and finishing, and finishing until rather late in the day (and I never did get to the last finishing touch, sewing the little round antenna things on). But he was very pleased with the results, so I think it was well worth the effort.

Electabuzz Pokemon

Electabuzz Ethan

At least our building does host a lovely party.

Jake loved this tree

It helps that it is full of family-size apartments and actual families with lots and lots of kids of all ages.  I remember when our kids were the youngest, newest members of the gang, and now they're firmly in the middle of the pack.

Then:

My little carrot and pea-pod, First Halloween, 2002

And now:

Candy-mouthed Electabuzz Ethan in conversation with a butterfly, Halloween 2010

 There is food: pizza and yummy sweets, ghoulish goodies aplenty

gives new meaning to the term "finger food"

And did I mention what they do with the elevators?  I forgot to photograph the elevators this year (doh!) but here's what they looked like in years past:

Vampire elevator operator, Halloween 2008

E & J hanging out in the haunted elevator with friends, Halloween 2006

Now imagine without the flash, with only a spooky black light on in the elevator...  Like I said, our building?  Halloweenly Awesome. 

So I kept thinking: "We'll do the big hullabaloo next year."  But then, only after it was all over, I realized that next year Halloween will fall on a Monday,  a regular work day.  And while there will be merriment, it won't be an all day affair, it won't be that magic Halloween weekend thing.  Not for another five years.  And in 2015?  The boys will be 13.  They will have been (god willing) Bar Mitzvahed already.  Too old to be swept up in the kiddie magic of Halloween.

Now, Jacob, due to the naivete and innocence that is one of the gifts of autism, will probably still be into the costume and candy excitement.  He really loves his Halloween:

Jake dancing with one of our building's resident Halloween Ghosts

But Ethan? 

Ethan showing off his massive 'tude

Likely to be too cool to play the fool.  But you never know.  It could happen.

Since a good time was had by all, I'm probably being too hard on myself.  I should just chillax.  A Twix Bar stolen from Ethan's candy bucket should do the trick... now where did I hide that thing?

Sometimes it's the little things

There are days when the little things either lift me up or drag me under.

There are days when the few, small, good moments keep me afloat.

These are those days.

Life right now is big in the overwhelming department.  The decline and death of Danny's mother following so close on the heels of my father's passing has bogged down our family in the mourning department.  It has been a year since my father began his big slide.  A year we have been dealing with the deterioration and dying of the old people we love.

Hopefully, this ends here.  Hopefully my mother is in the relative good health she appears to be and will grace us with her presence for at least a few more years.  At 88 she is going strong.  But she is so sad and lonely still.  I want to do more for her, but there are not enough hours in the day.  She needs a companion, and I cannot be that.  I have young children that need me more.  But I am tugged.  And whatever I do, there is guilt over what I am not doing.

Our family is intact, we have taken the hits and absorbed the pain, but we're not sparkly this year. We just don't have much energy for the usual fall razzmatazz.  We haven't been apple picking, haven't taken a hike in the woods, not a leaf has been peeped.  It's a small miracle I got the boys to our upstate friends annual Halloween Party, although we arrived late and Jake's pumpkin never got carved.

Seems I am half-assed right now about... just about everything. Except of course, my actual ass. I've been stress eating, so that's now an ass and a half.

Today I was just bone weary, and did NOT want to get out of bed.  But with kids there's no choice, they need a mom.  I have to get up, shower, make food, make plans, get us out the door to do... something.  Even if that something is just going up the street to someone else's apartment to play with someone else's toys and watch someone else's TV.

It's "out".

It's doing "something".

And most importantly, it's connecting with other people.

I need to keep reminding myself of all the recent small good moments.  String them together like little gems to glisten amid the dung balls that seem to rain down so often in our lives right now.

The other day Jacob had a dentist appointment, and it went wonderfully.  Jacob was able to follow my instructions even though I was behind the protective wall, and we got bite wing x-rays from him for the first time.

The hygienist had asked me "Do you brush his teeth for him?" and I thought she was going to criticize me for them not being clean enough, but instead she praised what a good job we've been doing.

I have had mixed feelings about doing most of his brushing - typically I "start" (do the job) and he "finishes up" (usually a few big swipes and then off to rinse) - because we are really trying to foster more independence in our 8 year old boy.   But dental hygiene is too important to sacrifice to his huge learning curve.  He just likes the feeling of biting on the brush too much to do a good job himself right now, no matter how much we coach him.  And when we tried an electric?  Bite-o-rama. 

But the up side: good dental visits.  And for a kid on the autism spectrum?  That is a godsend.  We have a great pediatric dental practice that knows how to be patient with special needs kids.  But this visit?  He was so close to "typical," really no harder to manage than Ethan, who - no surprise - tends to talk too much, even while they are trying to clean his teeth.

It was extraordinary.  It was a big shiny pearl of a moment. 

Jim Steinhardt - The Pearl Seller, NYC, 1947

Finally, I am brought much joy by my new toy: the scanner.  Coupled with the copious old photos that have recently resurfaced while moving my mother to her smaller apartment, I am in nostalgia heaven.

Cousins, February 1973

That's me at not quite 13, in the middle of my beloved cousins, attempting glamor.  If I recall correctly we were putting on a vampy show for our parents, dancing awkwardly and singing "We are Juvenile Delinquents"* rather off key.

So the garland wrapped around my life currently looks like this: turd, pearl, turd, pearl, turd, turd, turd, ruby, turd, pearl... hoping tomorrow is more pearls than turds (but keeping the rubber gloves on, just in case).


*We called the song "We are Juvenile Delinquents," but you might know it as "Swinging on the Outhouse Door."  It's an old semi-naughty camp song of unknown provenance and variable lyrics.  This is one version of it (ours was quite different, but I haven't found it on the web yet).