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Archive for the ‘The Anderson School for Autism’ Category

I’m at work and my cell phone rings.  (If it’s the area code where Jonah lives now, my heart goes into my throat, even though they’re usually “only” calling to notify me, as they must, that Jonah was involved in an incident.  That means he probably scratched, bit, kicked, and pulled God knows how many people’s hair.  It means they had to physically restrain him to prevent him from hurting himself or others).

It is the area code, and they are calling me to relate an incident.  When we hang up I call Andy and tell myself to just go back to work.  There isn’t anything I can do.

For years, behaviorists and teachers, psychiatrists, Andy, me – everyone – has been searching for a pattern to Jonah’s aggressions, a cause.  A reason for all this.  It isn’t who he is, the violent kid trying to scratch your eyes out.  It isn’t who he is.  It is as frustrating as anything I’ve ever known.  I don’t want to think about it today.  I want to know my son without having to fear him as well.  Thank God the world is catching on and more & more is being done for people with autism.

They say Jonah loves the new temporary house.  He can see the river and the railroad tracks, and right there you’ve got two of his favorite things:  water and train.

Jonah, at the glaucoma appointment, wearing J's sunglasses, playing it cool

I’m taking a couple days to go offline and see Guster (again) for my last concert this tour.  If I’m lucky, the dreaded area code will not appear on my cell phone until I return.  Be well, Boo.  Your mama loves you.

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Yesterday’s visit with Jonah was awesome!

We all expected him to be thrown off by his temporary move, just the night before, to a different house for 4 or 5 months while Birch House is renovated.  But the caregivers know how to prepare the kids.  Staff took the children to the new house lots and explained over and over again about the move.

But you never know what’ll set Jonah off, and this kind of change seemed likely to have made him angry.

To be honest I really didn’t want to drive down at all.  After losing Sugar and spending a couple days in an “off” place myself, I hesitated to risk another bad Saturday, another violent visit.   My mom would have gone anyway; nothing keeps her from seeing Jonah, but she’s more selfless than I.  In the end I went with her;  I missed Boo awful too.  Plus, it was such beautiful weather so I decided to spin the wheel and hope it landed on GOOD DAY.

It did.  Jonah was happy and excited.  He and I sat in the back of the car on the way to Andy’s apartment, and he sang with me, played with his hands, and looked up front at daddy and grandma.

But he didn’t ask for “daddy in backseat” like usual.  He was content with mama.

We played where is thumbkin and I taught him how to be The Fonz.

Aaaayyyy!

Jonah wanted to kiss me lots.

He’s got this little game he plays where he asks “kiss?  kiss?”  and we move our faces in slowly toward one another until, at the very last moment, he smiles and I end up kissing his teeth.

“Yuck!”  I say with an exaggerated icky-face, which sends Jonah into hysterical giggles.

“Kiss?  Kiss?”  he asks again.  “Oh—kay”, I say slowly, “but only if it’s a real kiss.”  So he arranges his face into mock-seriousness  as we prepare to move in for our kiss but he just can’t help it — the sides of his mouth twitch in suppressed laughter and he and I both start giggling.

Of course everybody gets his or her share of “huck?  huck?” and real kisses too.  Hugs and kisses, bath, park, turkey sandwiches, black soda, Hudson-River-by-the-train-station:

Then holding daddy’s hand and walking back down to see Grandma again…

In the car he wanted “more kisses?” and it made my heart fill up with something usually not present anymore.

“Kiss hand?” he asked, holding his arm out –so I took his little hand and kissed it.

“Kiss cheek?”  he wanted next, so I leaned over and soundly kissed his soft-child cheek.

“Kiss quiet?” he then said, holding out his pointer finger.  I took his finger to my lips and kissed it, tilting my head at him inquiringly. 

Kiss quiet?

He held the finger up to his lips:  “sshhhh.”

Oh!  “Yes, Boo,” I whispered, smiling, admiring the clever way his mind constructs language, the way he is a new kind of lexicographer.  “Kiss quiet.”

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“Faithfulness to the past can be a kind of death above ground.  Writing of the past is a resurrection; the past then lives in your words and you are free.”  ~ Jessamyn West 

I know exactly what Jessamyn means, though I’d never have been able to state it so succinctly.  And so resurrection occurs for me this Easter through writing.  When you write about something, your perspective gets to control it; when it has already happened you can shift it…place it under the microscope of your perception.  You can then craft it, shaping it, painting and whittling and building.  When something inside me has died, this is its resurrection.

Several things died inside me yesterday.  I am hoping the writing of them will resurrect.

My mother wanted to drive us down to see Boo for “our Easter” with him.  On the trip I would look over at her, worry over her; she drives the car a little jerkily these days, and she has lost so much weight.  She has not smoked in almost a month, and I told her I was proud of her.  I am.  But for her to quit smoking, she must have been very close to calling-911 sick, that unable to breathe.  She doesn’t let on to things and she does not go to the doctor.  Ever.

And so my mother and Andy and I repeat this process every Saturday, spinning the wheel of Jonah-Fortune, each time getting a different result.  This time my mother and I passed a truck on the way down; on its back was painted a Bible passage about hope and trust in the Lord.  This my mother took to be a good sign.  I took it too.  If  God wants to throw us a bone, I’m a grateful pup.

Anyway, Jonah’s school had an Easter Egg hunt that morning, and Jonah loved it, they told us.  I wish there were pictures, a video.  I wish I could be Big Brother watching.  No, not really.

I just want to watch my son smile and laugh.  He laughed on the way to the apartment.  We held hands and sang Guster songs and Zip-a-Dee-Doo-Dah.  We played Where is Thumbkin…

I took 3 pictures of us.   I’m a homely thing, but I’ll post one anyway.  Jonah must have gotten the cute from his dad’s side. 

When we first got to the apartment everything started as usual — Jonah almost immediately stripping down for a bath, my mother spreading out food on the table, Andy supervising the filling of the tub, me preparing to help where I’m needed.

Downhill it all went, quick as a bunny, you might say, and there isn’t going to be much of a blow-by-blow today because I don’t have it in me.  Jonah ramped up and ramped up, splashing water, then throwing his plate of food, then turning like lightning and going for my face.  I caught his wrists, he scratching the insides of my wrists.  On time-out in the bedroom Jonah decided to use poop as a weapon and started to push.

Andy quickly picked him up and put him on the toilet, where Jonah finished pooping – but not before he got some on the white knitted throw.  Andy did restrictive holds and scolded Jonah while my mom put the bedspread in the sink, scrubbing it, and I stood in silence.  There was fighting and yelling among us all.  It was chaotic and felt dangerous and wrong.  It made me want to scream that scream inside me, the scream that keeps getting bigger, tight and thick as a brick.    All this was supposed to be our little Easter celebration.  I didn’t eat more than a few bites.  I don’t know how long it will take for this to feel like another new normal.

I think it’s time we make an appointment with Jonah’s caseworker and we can all go and talk about Jonah, ask for guidance, find out what’s working for them and what isn’t, find out something.  Find out anything.

Eventually we did get a small amount of playground time with Jonah, and we walked over to the vending machines and bought him pink lemonade. “Pool? pool?” he even asked as we passed the gated, empty, cavernous rectangle .

Yes, bunny, pool is coming…just a few more months…

Then back to the playground, where he actually scampered up the slide and on other play equipment (as opposed to swinging to the exclusion of all else).  Abruptly he asked for “Birch House?” –which is where he lives, right next to the playground.  His bedroom window overlooks it, the play area…his favorite swing… the pool beyond it.  We followed him in to say goodbye.  I know now how to put my brain and heart on NEUTRAL or I couldn’t do this thing again and again and again.

A small scratch Jonah had made just under my right eye stung every time I cried yesterday.  My wrists look mysteriously pocked, almost pecked – The Birds style.

But mostly it’s exhausting emotionally for us all.  Sometimes I don’t think Andy is doing well, I know my mother isn’t doing well, and as for me, writing is my resurrection.    Still, there is doubt in everything I do — in every motive.  Am I too self-conscious or merely self-aware?  Am I hyper-sensitive or is everyone else desensitized?

And how the heck does the Easter Bunny get from house to house?  I do not believe this has ever been explained to me.

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There is something almost routine, now, about kissing my son goodbye after a visit or a doctor appointment.  But sometimes I step back unwittingly from that routine and kissing my son goodbye comes with a horror that feels like the day we said goodbye for that first awful time at the school. 

My mind is pretty good at erasing or dumping some memories and then it refuses to get rid of others;  I will never be able to escape the memory of kissing my son goodbye that day.  I don’t think I’ve ever held my breath for longer than when they led him away, out the door, down the hall.  Gone. 

When Andy and Jonah left today it felt like that.  I had a difficult time listening to what the doctor was saying and absorbing it all.  I gave her the direct number of Jonah’s nurse at school and I wrote down a lot of information before I left, though.  The conversation helped to snap me out of longing to run after Jonah and snatch him up into my arms.

For a while I have needed to go out in an empty field somewhere and scream my head off.  Really scream. 

It sits inside me, that scream.

World Autism Day.  Light it up Blue.  Good.  Make them aware.  Research, figure this out.  Please and thank you.

Today the doctor was a pediatric rheumatologist who is only in Albany two times a week.

Remember when we had to drive all the way to Boston Children’s Hospital?

There was a rumor that she had a practice in Red Hook, close to Boo, but no one could confirm this.   So E took matters into her own hands and found out this doctor lives in Rhinebeck (which also is near where Jonah lives).  E tracked her down and called her home phone to ask her does she have a practice in Red Hook or not?  

(E is badass.  I told you so.  She gets shit done).  But the doc’s got no practice in Red Hook.  

So today Jonah, in honor of World Autism Day, got his official diagnosis of JRA (Juvenile Rheumatoid Arthritis).   Now I am becoming acquainted with yet another disorder/disease.  There are several kinds of JRA, and Jonah’s is called Pauciarticular Onset JRA – the most common form of JRA.  Of the three JRA subtypes, (reads the brochure) children with pauciarticular have the highest risk for getting chronic eye inflammation called uveitis.   So it is piecing together, albeit slowly.  Next Tuesday we’re going back to Dr. Simmons again to see what now.  I’m researching Methotrexate, the drug they’re thinking of recommending.

As I typed this CNN e-mailed and asked me if I’d like to write some more, so I said yes of course, in honor of World Autism Month.  My favorite pressure, the pressure to write.  I guess because it doesn’t feel like pressure at all, the writing.  But as before I have no given theme or direction — they’re entrusting that to me — so I’ll kind of be winging it.  I am honored just to be asked.

Here are some pics of Jonah from the doctor’s office today – I love taking pics of Boo!

First he was happy.  “What color are the flowers, Boo?  Let’s count them!  1…2…3…4…”

Then he got antsy and needed to walk the hallways.  Black kitty he said, pointing. (I think it was actually an owl.)

Luckily we were at the end of a hallway with a big window.  He visited here quite a few times.  It makes you wish you had one of those passes you get if you take your kid w/autism to Disney.  They go first.  No waiting.  Seems like implementing this at the doctor’s would be a really good idea.

I have to say though, she was very cool, this doc.  We’ve been fortunate to have caring doctors for Boo.  A doctor even took the time to help me find where to go when I’d gotten lost.  Thank you, Dr. D.

“Grab a hold
Take these melodies with your hands
Write a song to sing
Isn’t such a bad, bad world

And I say these times are strange
I can feel it in the night
I’m standing in the dark
Holding up for the light

And here I’ll remain
‘Til the great sun shines
Standing in the dark
Waiting up for the light…”

~ Guster, Bad Bad World

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“Well on the way, head in a cloud,
the (boy) of a thousand voices talking perfectly loud
But nobody ever hears him or the sound he appears to make,
and he never seems to notice…but the fool on the hill sees the sun going down,
and the eyes in his head see the world spinning ’round.”

~Fool on the Hill;  The Beatles.  (I changed man to boy, for Boo).

Fool on the Hill is Andy’s mother’s favorite Beatles song.   I remember little details and forget big ones.

It was not a good weekend for Boo, or so I hear.  I didn’t get to see him.  This weekend was our annual Spring Convention at NYPA, where we represent nearly 800 community newspapers and gather them all for a weekend full of training, fun, and elegance, this past Friday and Saturday at the Gideon Putnam in Saratoga.  As it involves months of preparation and hard work, it is particularly difficult on some people in my office, and they pull it off, year after year, with smiling, professional aplomb.  I don’t have that kind of whatever-it-takes to do it.  I tried, years ago, and couldn’t pull it off.   “The weak get crushed like insects,” young David’s father told him in the fabulous move Shine.

So mostly I attended a lot of classes, all taught by awesome speakers giving great advice.  Our keynote speaker at Friday’s lunch was Alex Jones, and I thought he was awesome.  I even bought one of his books when I got home:  “Losing the News: The Future of the News that Feeds Democracy (Institutions of American Democracy).”

Friday night there was a Gala, and I wore a slinky blue dress, flowing and sparkling.  I loved it when I saw it and bought it without concern for whether or not I could pull it off.  “Keep your shoulders back,” co-worker L kindly reminded me, for I tend to hunch in on myself, as if in an attempt to disappear completely.  If you’re going to sport a dress like the one I wore, you have to have something I just don’t have.  I felt shockingly thin and overly self-conscious.  When will I learn to find a fashionista friend to shop with me and be my Simon Cowell?  I don’t drink, so I didn’t gain “liquid courage.”  (In fact, one of the reasons I don’t drink is that at one gala I did get tipsy, and overbearingly begged for one publisher’s reminiscence of the Grateful Dead for way too long.  I’m still embarrassed every time I see him; I think he’s really cool.  When I am drunk I am a train wreck.  Best to avoid that.

Dr. Phil (who is not my personal guru or anything, believe me) says “You wouldn’t be so worried about what people thought of you if you knew how little they did.”  In this case I know he’s right. In spite of my stupid self-absorption I  had a great time and met lots of incredibly awesome people.  ‘Twas a success, methinks.  A big one.  The whole thing was made all the richer by the presence of a new bunch of people representing ethnic papers.  They were gracious and cool to meet and talk to, learn from.

At the end of the conference I gave one publisher’s daughter, little J, my ID card lanyard.  She wore it proudly.

But

I am sorry for my mom and for Andy most of all.  I guess on Saturday Andy drove Jonah up to visit my mom, and everything was okay for a while, until car ride.   They went to see train and caught a long one, but Jonah quickly became agitated afterward.  My mom said he took off his pants, grabbed handfuls of his poop and smeared it on the back window.

God knows what else he did that neither she nor Andy told me about.  The cleanup, the tantrums, the shit quite literally all over the place, the ride home.  Dropping Jonah off.   Thinking about it and trying not to try not to think about it.

I was spared from it by convention, thank God.  Were I there it would have almost certainly been worse for everyone and maybe me the most.  The weak get crushed like insects.  Thank you to my mother and to Andy.

Tomorrow Andy and I have to take Jonah to a semi-emergency appointment to see the pediatric rheumatologist.  (The earliest appointment she had was in June and she squeezed us in now because we have to be quick about all this).  So far we’ve gotten lucky with Jonah’s doctors but we’re due for a shitty one.  Either way, it looks like there is eye surgery of some kind in Jonah’s future.  His right eye, blessedly, is fine. The doc appointments just  kind of just go on and on, but I guess that’s just being a parent.  We will save the sight in his left eye; I’m going to do my damndest to see that we do.

Next Tuesday is another appointment with Dr. Simmonds again, the glaucoma doc, and E and J will be able to bring Jonah up to that one.  I love those guys.  I know I keep saying it, but I can’t help feeling so grateful for them.  By then the glaucoma doc and the juvenile arthritis doc will have conferred and will have a good recommendation for what we can do.

Your mama misses you, Boo, and loves you very, very much.  But I’m not going to lie to the people this weekend – I’m glad I wasn’t there when you flipped out this Saturday.  I’m glad – even if that exposes me as a selfish little girl.

I am so tired today, I don’t have it in me to do much of anything at all.

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“Thanks to Shakespeare’s indelible dramatization, March 15—also called the Ides of March—is forever linked with the 44 B.C. assassination of Julius Caesar, and with prophecies of doom.” ~ Brian Handwerk

I have to admit I don’t particularly like Shakespeare, unless I get to see it as intended, as an audience member watching very good actors on a stage.  Reading Shakespeare for me is like trying to translate something you’ll never quite understand.  And we won’t even talk about Chaucer and his bullshit middle English.

But I love to hear my boo talk, no matter how hard to understand or decipher.  When he is happy he fairly chirps – sometimes screams and screeches – and laughs until his tummy hurts.  My God that child can laugh.

Sometimes he’s just giggling but other times he just cracks himself up, or something strikes him as hilarious, or he just is filled with joy.

Tomorrow please God let it be E and J who come to meet me at Jonah’s appointment with the rheumatologist.  I am excited to see Jonah.  I hope he wants hugs and kisses.  I’ll bring bubbles.  Everything will be fine.

There was a beautiful rainbow this morning, and I went in and dragged M outside to see it.  He came out and we stood at the end of the driveway at 7:20am and looked and looked.

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“The wheel is turning and you can’t slow down,
You can’t let go and you can’t hold on,
You can’t go back and you can’t stand still,
If the thunder don’t get you then the lightning will.”

~ The Wheel by the Grateful Dead

I’ve probably quoted that before in this blog.  A funny fact is that I’ve never read my blog straight through from beginning to end.  I could be repeating quotes, stories, ideas…hell, all kinds of shit.

Well it appears our 15 minutes of fame are over.  Jonah’s been swept off the top ten stories of HLNtv.com by famous people and real news. And here I’d dreamed of some publisher happening upon our story and offering me an advance of $25,000 to edit the blog into a book…but not a one has materialized, thus far.  Heh.  I did, however, connect with all lots of amazing new people. People just like me. And supportive souls. And adults on the spectrum.  We’re all in a magical, leaky, strangely expanding ship – the S.S. Autism.

The whole experience, though, was a jolt of affirmation I really needed.  (I thrive on affirmation; it’s damn near Pavlovian).

The thing is someone gave me a chance to tell my story, and I’m grateful for that chance. Thank you, KC.

But the wheel turns, and comes a time for things I don’t want to think about.  Jonah’s first visit to a rheumatologist in this area on Friday, and, on Monday, exploratory eye surgery. I pray to God those same two awesome people who drove him up last time, E and J, will be there.  With them everything will be okay.  It will be okay if Jonah kicks and it will be okay if I burst out sobbing and I don’t have to worry about keeping it together because they will help, they will know what to do and what to say and how to navigate the whole mess.  They have compassion and knowledge and heart, these people.  They love.  Thank God, they love.

Because without them I’d fall apart again. I can’t stand the thought of Jonah scared. In pain.

I remember holding him in my arms  for his first eye surgery, when they implanted the Retisert – how he looked at me with this deep, intense fear in his eyes as I placed him on the operating table…how I watched him go limp-that-looks-like-dead as the anesthesia took effect.  I kept it together long enough to look the surgeon in the eye and whisper “please help my son.”  She held my gaze and promised me, silently, nodding.

I remember closing the door and flattening myself out against the coolness of the wall on the other side.  Telling myself to breathe.  To trust.

Throughout these last ten years I have entrusted my child to so many people.  I am so lucky, so grateful.  I trust and I trust.  To do anything else is to deliberately envision (create?) a worse reality. At least with trust there is hope.

“You must trust and believe in people or life becomes impossible.” ~ Anton Chekhov

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Not a shred of evidence exists in favor of the idea that life is serious. ~ Brendan Gill

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 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

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…

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Well I almost missed my connecting plane in the ridiculously gigantic Atlanta airport but thank god and little baby jason, my next flight was just one gate away, maybe a 60 foot walk.  And it was so wonderful to step off the plane and back to my pretty little city, even though it was about 35 degrees colder than San Antonio.

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.

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It was crappy, very cold, fine-snowy weather when my mom and I left early this morning to meet Andy at his apartment and then collect Jonah.  The kind of weather where if you just avoid the first few hours of driving in it, you’ll be fine.  Well we were the ones on the road during the slippery beginning of the storm.  My mother wanted to drive us down in her car so that’s what we did.

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?

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