Archive for January, 2012

I’m writing like the wind to meet some deadlines, so until I can get back I’ll post favorite quotes:

“Never, never be afraid to do what’s right, especially if the well-being of a person or animal is at stake.  Society’s punishments are small compared to the wounds we inflict on our soul when we look the other way.”

~ Dr. Martin Luther King, Jr.

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Three things in human life are important. The first is to be kind. The second is to be kind. And the third is to be kind. 

~ Henry James

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“The great thing, if one can, is to stop regarding all the unpleasant things as interruptions of one’s ‘own,’ or ‘real’ life. The truth is of course that what one calls the interruptions are precisely one’s real life — the life God is sending one day by day.”

~ C. S. Lewis

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“Twenty years from now you will be more disappointed by the things that you didn’t do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover.”

~ Mark Twain

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 “Adults are just obsolete children and the hell with them.”

~ Dr. Seuss

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not possible

“It is not easy to find happiness in ourselves, and it is not possible to find it elsewhere.”

~ Agnes Repplier

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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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I just returned from some standardized-test writing training in San Antonio, TX.  I brought a small Guardian Gus to give away, but first we had a photo shoot (and yes, people were staring at the full-grown woman taking pictures of her stuffed animal friend)…

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!

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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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Well, it has come.  The avalanche of work and more work, broken up by becoming the Scare-Me-Not mommy (I adopted so many the scaries have absolutely no chance here).

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.

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I’m officially the Scare-Me-Not mommy, with several of them now in my care.

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.

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Zoom Focus: A Kids-Eye View of the Capital District

January, 2012 – By Amy Wink Krebs

 Scare-Me-Nots Save the Day! (and Night)

Are you afraid of the dark?  Do you feel in your pounding heart that monsters are under the bed?  Carl Restivo understands.  When both of his kids had night-time fears of ‘creepies’ in the dark, he decided to “fight monster with monster” – and Scare-Me-Nots, stuffed heroes equipped with extraordinary fear-squashing skills, were born.  The Scare-Me-Nots, whose collective mission is to help children with any fear, have long velcro-tabbed tails so they can hang down to keep watch under mattresses, clear monsters from closets, or pull all-night guard duty on doorknobs.

Carl’s website, www.scaremenots.com, details his story and the inception of these award-winning “monsters” far better than I could.  Plus the site is really fun.  You get to find out how each Scare-Me-Not serves a precise purpose, only after having graduated from the prestigious Scare Me Not Academy.  These are no ordinary toys, you understand.  Watchdog Wally is a master detective, for example, while Valiant Valerie specializes in opponent territory infiltration.

Carl lives just outside Clifton Park, which makes the Capital Region home to a great innovator.  His Scare-Me-Not monsters are available for sale on his website and also at Wit’s End Giftique on Route 9 in Clifton Park.  But Carl’s not just a creative entrepreneur; he’s a quiet philanthropist as well – an unassuming man who doesn’t sing his own praises.  I had no idea that he’d developed a special Scare-Me-Not, Deep Breath Dudley, especially for kids with apnea and other sleep disorders, offering proceeds back to the Infant and Child Sleep Apnea Awareness Foundation.

And Carl also offers a Scare-Me-Not to every child entering new homeless shelters in California through a program called Project Night Night .  Perhaps most impressively, through the Northeast Parent and Child Society (and with the help of The Capital Team of RealtyUSA and 1st Priority Mortgage Company), he presents a Scare-Me-Not to every child placed in a foster home.

When I met Carl he decided to give again.  We were out for coffee and a chat, and he’d brought two of his Scare-Me-Nots, simply as nice-to-meet-you gifts.  Those of you who’ve read my column “Normal is a Dryer Setting” may remember that my 9-year-old son Jonah has severe behavioral problems and is now in residential educational care.  I told Carl that I’d like to give the Scare-Me-Nots to Jonah’s school for their silent auction. He smiled and said that would be just fine.

I dropped the two Scare-Me-Nots  off at Jonah’s house and told a staff member they were donations for the auction.  Next time I came to visit Jonah, the gala was over but the Scare-Me-Nots were still there.  In fact, one of Jonah’s house-mates was clutching one tightly as he rocked back and forth on the couch.  “The kids loved them so much we couldn’t take them away,” explained one of the caregivers.  When Carl heard that, he donated enough Scare-Me-Nots to the school so every incoming residential child in 2012 could have one for free.

There were a few extra Scare-Me-Nots left over, and I gave them to places I thought Carl would approve of:  a local childhood cancer center, an autism classroom, and a rescue mission.  I admit, though, I kept one for myself:  Defender Dave, who has eyes all around his head so monsters can’t sneak up on him.  I hung him by his velcro-ed tail from the curtain rod close to my bed.

I don’t care if it sounds silly:  I love my Scare-Me-Not.

Even grown-ups have monsters to fear, and Defender Dave helps keeps mine at bay.  More importantly, he restores my faith in humanity.  Every time I see him, I’m proud that our own little corner of the world has such imaginative, generous people like his creator in it.

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Amy Wink Krebs lives in Albany, NY, what she likes to call “our pretty little city.”  She loves discovering cool things for kids in the Capital District and then telling you about them.  Please write to Amy at winklett@hotmail.com.

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Please go to the Scare-Me-Not facebook page and “like” them!

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postcards to jonah

I decided to start sending postcards and letters to my boy.  I’ve asked the caregivers to read them to him.  I know he can’t understand a whole lot but perhaps he will know they are from me, and he will know I am thinking of him and missing him.  Today’s is a postcard with a red train on the front.  On the card I wrote:

Hi, sweet Boo

Mama loves you!  Look at the other side of this card.  What is it?  What color is it?

I will be there to see you soon, lovey.



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circle pepperoni

I wanted to post pictures tonight but I can’t find my connector wire between the camera and the laptop.  I hope it’s at work.  Jonah was cute last weekend when my mom and I went down to visit him.  She brought a little package of pre-sliced pepperoni, which she told me was organic pepperoni.  (Sounds like an oxymoron to me).

Jonah asked for some by saying “circle pepperoni?” –which I loved.  There’s nothing cooler to me than when Jonah adds to his unique nomenclature.  Moneycoin.  Black soda.  Yummy green grapes.  Circle Pepperoni.

I don’t mind if Jonah gets treats once a week.  They keep the kids at the school on a special healthy dietician’s plan which definitely does not include circle pepperoni.  Jonah eats the healthy food, and vegetables, and salad, thank God and little baby Jason.  I’m looking forward to seeing him again Saturday morning.

I’m tired.  And pretty soon I’ll be up to my eyeballs in work.  The kind where you come home from regular work and sit down to work some more until you fall into bed, all tight and tired.  But I’m not complaining.  I might want a special needs trust for Jonah, and I hear tell it costs a lot just to pay a good lawyer to set one up.

I need to jump around a bit, go for a brisk winter walk, cook and read and visit more, and not just sit and write all the time.  But everything I’m doing right now in my life is something I want to be doing, and there’s something to be said for that.

It’s growing colder.  We’ve been spoiled so far this winter with wimpy, cool days with no snow and little wind.  Now things are starting to ramp up a little in the winter department.  Cold goes through me and gets into my bones…and yet I’m stuck to this area like glue.  Albany is my pretty little city and I love it here.

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