Jonah and Fearless Fred.

This picture was taken a month or so ago, during the only snow we’ve really had.  A few inches, once or twice.  And remarkably warm.  Spring birds are singing.

I have not been here because I’ve been here, and here, and though I do love to write these things, sometimes I wish someone would pay me to write blog posts instead.  I have ideas for things I’d like to attempt.  A novel.  A memoir in blog format; basically, this blog (so as not to require any work on my part except to edit/proofread and ask an agent to read it).  But I’ll take what I can get.

Jonah was so good on Saturday.  Andy was kind enough to drive him up to grandma’s house, where I met them and we commenced to have circle pepperoni and bath and car ride (complete with perfectly-timed and very long train).  Jonah was hyper but happy.  I gave him a bath by myself (usually Andy does this), and we made a fine mess in the bathroom, splashing and laughing and getting bubbles everywhere.  He went to the bathroom like a big boy (it’s hard for me to believe I’m writing that about a boy who is going to be 10 on March 7th).  He ran, soapy and dripping, past my towel and into the front guest bedroom, where he jumped up and down on the bed and I jumped up and down on the floor, timing my jumps to his, and the both of us laughing and yelling Jump! Jump!  Errry-body jump!

I love Boo so much.

We have Fun Fridays once a month at work now, and they are fun.

I have joy in my life and I feel happiness again, though tomorrow would have been Sanx’s birthday (her 38th? I’m not positive).  And Gina’s been in the Times Union‘s big investigative report about NXIVM, and that’s all kind of crappy.

I also thought of the coolest band name ever:

His Boy Elroy

I shouldn’t have told you.  Now you can steal my coolest band name ever.
Take it!  Somebody steal it!  I should google it and see if it’s already been done.  Probably. Let’s see…

Yes!  Shit.

I think this picture was taken last weekend.  I’ll never tire of taking Jonah’s pictures and then looking at them later.  I’ve been sending more postcards and letters and little packages to him. 

I miss my boy and this is my way to be closer to him.

Mom and I drove down to see Jonah today, stopping first, as usual, at Andy’s to drop off lunch and get settled before picking up Boo at his house.  She insisted on driving, though she makes me nervous as hell.  We didn’t get off to a great start because she was asking me what I wrote about for my column in the January issue of the Capital District Parent Pages, and I asked her why she didn’t know, and she said she didn’t have it.  She didn’t have any of the issues, in fact.

There is a diner a mile from her house at best; they have the issues for free in the vestibule before you even walk into the restaurant.  Perfect place to pick up a copy, which I’ve told her before.  I pointed this out to her again.

“Well I don’t really go to the diner very much,” she said.  I bite my lip, look out the window.  I know I shouldn’t say it but I do anyway:  “I’m getting mad,” I said, “and hurt.  You can’t go pick up a copy of the monthly magazine your daughter writes a column for?”  Then I sighed.  “I’m sorry,” I said, staring at her fragile, thin legs and watching her fish for a cigarette.  “Just forget it.”

I seek affirmation and seek affirmation and seek affirmation.  From my mom, my father, my boyfriend, my friends, my boss –even my child.  Clearly I need to stop thinking of myself as the center of every scenario.  Perhaps not coincidentally, I just finished reading a fantastic book Tim Smith of Smile-Therapy sent me:  Go Givers Sell More.   The book’s co-authors talk about how the sales process isn’t about you. They suggest getting on the phone and listening to people’s stories, to find out what makes them tick, where they come from, what they dream of doing someday.  It’s got the flavor of Carnegie, only rings far less scripted, more sincere.  Be a giver.  Listen.

To listen well is as powerful a means of influence as to talk well, and is as essential to all true conversation.  ~ Chinese Proverb

Speaking of listening, my mother then decided to play a Christy Lane CD.  My apologies to her fans, but what an overproduced shmaltzy mess of songs.  She can sing, but it’s what she sings that grates.  Footprints in the Sand.  Really?  They make it into a song and present it as if it were wisdom we’d all not heard ten thousand times before?   Sigh.   Too loud, too loud, I kept thinking, until finally asking if we could turn it down just a little.  She lit another cigarette and nodded her assent.

I listened.

Jonah was about how we’ve come to expect.  Hyped-up, begging for tuna and bath, black soda and car ride, daddy in backseat.  I brought Protector Patty with us and Jonah played with her a little.

dad offers a grape

Good thing Patty has multiple eyes!

She even came with us on a walk in the woods.

Like ScareMeNots before her, she insisted on hanging around in the trees…

Patty, loving life.  I swear these ScareMeNots actually show emotion.

I’m tired and I’m inundated with work, writing and re-writing.  I asked for it but it’s difficult and I’d rather write here or more for the Capital District Parent Pages…but neither of those pay me a dime.  For the test writing I get moneycoin.

It is also a nice distraction from the anxiety that seems to invade, uninvited and inevitable, when I have less to do.

Mama loves you, little Boo.

Everything is okay in the end.  If it’s not okay, then it’s not the end. ~ Unknown

I just heard now that Whitney Houston died, of unknown causes, at the age of 48.  How sad.  What a waste.  I guess if everything’s okay in the end, everything’s okay for her.  How weird that I had just typed that quote…

~ Agnes Repplier

I didn’t get in until midnight, which is waaaaayyyy past my freakishly early bedtime.

Andy drove Jonah up to see me and “gwandma” at my mom’s house around 11am the next day, thank you Andy, so I didn’t have to get up early and drive down.  But the visit was short, and Jonah wanted daddy or grandma, not me.  I’m jealous, and it hurts, and I know intellectually I should not take this personally, but I long for Jonah to run into my arms and squeeze me tight, the way he does with his daddy.  I want him to ask for me the way he asks gwandma? gwandma?

And then of course I don’t.  Why would I want my child to hurt more by missing yet another person?  I love him with all my heart and that’s what matters.  His daddy is down there with him – takes him to the grocery store despite Jonah’s screeches and screams,  bearing stares and glares and God only knows what, then drives him to the park or the train station…in the cold, on windy days, without complaining, just so Jonah can get fresh air, fun, and exercise.  There is no denying Andy is a fantastic father.  No wonder Jonah goes flying into his arms.

But the last time I drove down with my mom to visit Jonah, I walked in the door first and there he was, my sweet little boo, sitting in the chair nearest the door.  He looked up, saw me, and immediately looked around me for his father.  And it felt like shit.

I need to remind myself this blog is subtitled “autism: sans sugar-coating.” 

I’ve been sugar-coating-by-omission, trying to sound optimistic and cheerful and fine.  This visit wasn’t fine.  They were gone before we knew it because Jonah started flipping out, getting all ramped up and squirrely, rapidly cycling through requests, growing more and more frenetic.  All red flags for meltdown/violent behavior.  Tune Fish Samwich?  Car ride?  Bath?  Bath?  Bentley (the neighbor’s dog)?  Hot dog?  Bath?  Want Cookie?  Then, always, and worst of all:

Home?  Home?  Home?

After their visit I lay down, my head aching, thinking about the Ned Fleischer Life Celebration that night.  Luckily I got to sleep for a few hours, then I picked up an old high school friend (who also has a child on the autism spectrum) and we drove there together.  

It all scared me the death.  In high school I mostly stood in the background and admired people.  And was jealous.   (There we go, cycling back to the jealousy).  Here’s where I could learn a lesson or two from my son; I bet Jonah’s never been jealous a day in his life.

But I was not jealous, not even one little bit, when Anne Empie Ryan stood up to sing.  With that incredible voice, that voice I hadn’t heard in 25 years and would have paid money to hear, she sang two soft, heart-wringingly tender songs.  Clear and strong, she bravely swallowed down everything – her grief, her self-doubt – and sang her heart out.  I put my hand to my face to try to catch the tears rolling freely at all this beauty and pain….a standing-room-only of young and old who loved a man dearly because he was, without doubt, one-of-a-kind – and her perfect tribute to him, from all of us, delivered by the voice of an angel.

Memories landed on memoies, filtering, slowly, and I was unsure at first of names, though I recognized so many people.  I put on the bravest face I could and approached many folks I knew (and a few I didn’t), trying to appear normal and fine.  Luckily, crying didn’t seem out of place here.  When I walked over to Anne after she sang, we hugged tight, sobbing and holding one another like best friends.  

Everyone was so kind to me.   I didn’t have an anxiety attack (which felt more like an accomplishment than it should have)  and I was grateful for the smiles and gracious greetings.  I had fun and met or re-acquainted myself with a dozen or two really awesome people.

That’s something to be said for Mr. Fleischer; after all, every one of them was there to celebrate him.  He attracted good people. 

It was a beautiful tribute – and though, yeah,  he may have been pissed at all the attention given to his “life and times,” I think he also, deep down, would have been proud. 

Is proud.  Smiling.

And still perpetually tanned.

Hanging out in the palm trees & basking in the 70 degree sunshine

Checking out the jacuzzi

Gus, defying gravity!

Gus, Willy Wonka style, in the great glass elevator

Hanging at the cabana

I ended up kissing Guardian Gus goodbye and handing him to a sweet lady from Arizona who has 5 kids.  Gus is so excited to be a part of a big family…

Guardian Gus promises sweet dreams!

Nothing can stop her from visiting her grandson.  Nothing.

I believe she’d trudge through a blizzard in boots all 90 miles if she had to.  I was laughing to M about how this would be my death day, walking around the house singing “and when I die…and when I’m gone, there’ll be one child gone in this world, to carry on, to carry on…”

“Stop that,” said M.

But we survived the small storm and got our visit with Jonah.  I brought Fearless Fred, one of my Scare-Me-Nots, down with me.  He wanted to serve and protect us on our slippery way – I imagine because he’s not afraid of anything;  he really is aptly named.

Here are some pictures from our adventures today:

First Jonah got his boots and coat off, and jumped on daddy’s bed.  When he’d calmed down enough to sit, I brought in Fearless Fred.

I handed him to Jonah.  Jonah pulled Fearless Fred’s face in to his own and gave him kisses!

Jonah and Fearless Fred, making friends…

Then it was — you guessed it –bath time!

…and more fun with Fearless Fred

Then lunchtime.  (Fearless Fred tries hard to look busy while stealing a wedge of orange with his tail).

Jonah wanted to take Fearless Fred on our snowy walk.

Then Jonah and Daddy started to run ahead, but Fearless Fred didn’t mind so much.  He wanted to play in the snow,

and hang from branches…

and climb twisty vine-embraced trees.

Show off!

I love my boy so much.  I just want to turn the heated blanket up and crawl into bed.  I have all my adopted Scare-Me-Not “kids” to tend to (only someone as kooky as I could pretend to believe that I mother plush monsters).

No, there is work to do.  And I’m fighting the urge to completely abandon reason, geek out, and send a care package to Guster.

Then again, there’s always tomorrow.

So anyway once again I ask you to make Fearless Fred and his friends go viral by LIKING the Scare-Me-Nots’ facebook page.  I am the cartoon Mommy cyclops monster with dual-lensed glasses, who administers the page and occasionally holds contests with cool prizes.

Should I organize a Scare-Me-Not flash mob?

There are two Scare-Me-Nots at Jonah’s house, and they’re never in the toy-box.  They know their duty and understand they must be vigilant at all times.  One of Jonah’s housemates adores Fearless Fred (the red one, saluting) and is clutching it every time I visit.  So I adopted nine good little monsters and had to send my not-so-good ‘little monster’ boo away.

Life is so incredibly strange.

I’m not sure when I’ll be back.  Deadlines are real now, and trainings, and lots and lots to write.   It feels good, and challenging… but it’s time to begin, and I want one more night not to.

This is fun…please visit me on facebook and LIKE the page.  Thank you!

Last weekend wasn’t fun for anyone.  Jonah was aggressive and Andy was sick.  My mom was tired and I was weepy.

But Saturday night M and I got to see Jim Gaffigan, who was so funny I cried laughing the whole time and my stomach hurt afterwards.  I went through a whole pack of mini tissues what with gasping for air and wiping my eyes.  It was awesome.  I needed it.  Thanks, Jim.