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Posts Tagged ‘NY’

got to get in to get out

Posted in singing, swimming, Uncategorized, tagged , , , , , , , , , on January 20, 2013| 1 Comment »

“The walls are painted in red ocher
and are marked by strange insignia,
some looking like a bulls-eye,
others of birds and boats.
Further down the corridor,
he can see some people; all kneeling.

The carpet crawlers heed their callers:
We’ve got to get in to get out
We’ve got to get in to get out
We’ve got to get in to get out.”

~ The Carpet Crawlers, Genesis

I dreamt of strange, vague, nightmarish, nondescript apocalypses, of dying people everywhere, irradiated, burning from the inside out.  Of Andy and I trying to get to Jonah.  It’s hard to breathe, see, or hear.  All food is gone, and the sun is obscured by black falling snow.  The car is on empty and finally stops, and a landslide of mud and logs is coming at us, certain death, and I’m trying to handle that but then suddenly we see Jonah in a huge pool.  A police woman tells me sternly to remove him from the pool.  “There are carpet crawlers on his raft,” she explains, and is gone.  Andy and I climb in the pool with Jonah, and Jonah reaches out to grasp one each of our hands, sliding off his raft.  He pulls us down to the bottom and we can breathe the water and see just fine and are no longer hungry — and the carpet crawlers are, after all, only on the surface.   Then, slowly, the water drains, and we drown gasping in the air.

This following the Guster show Friday night at the Capital Theater in Portchester, NY.  Maybe the significance is we had to sit next to four drunken assclowns who drank and drank and drank, laughing and talking through all the songs because dammit we were in the wayback (second to last row balcony) and they could get away with their obnoxious douchebaggery.  The girl with the Coach bag asked me to watch her coat in between drinks.  I wanted to say “You think there are coat thieves back here in the balcony of a Guster show?”  Her steroid-large boyfriend paused his constant texting after every song to hoot and holler, laughing.  Why are you HERE?  I wanted to ask them.   Sigh.  I’m getting old.

But then the music took over and I forgot about wanting to punch the moron.

It was an awesome show.  I even got a few decent pictures from my far-distant perch:

Ryan and Luke

Ryan and Luke

April, Charlene, Adam, Ryan, Luke

April, Charlene, Adam, Ryan, Luke

Brian, under spotted light effects

Brian, under spotted light effects

Dwight Yoakam? Isn't that the country singer who played Dole in Slingblade?

Dwight Yoakam?
Isn’t that the country singer who played Dole in Slingblade?

I dislike Westchester.  Lived there for a year.  But I had to get in to get out.  That night I had the carpet crawlers nightmare.

Next morning M dropped me off at Andy’s, where we met my mom and drove to pick up Boo.   Everything seemed in slow motion – even Jonah, who was more subdued than usual.  Even his lone aggression, aimed at Andy, fell short of notable.  I brought Guardian Gus the ScareMeNot for Jonah to hold, and all was right with the world.

O

Later Jonah took a bath and put his head right underwater.

Later Jonah took a bath and put his head right underwater.

It reminded me of that creepy dream, but we had a good day and Boo was, for the most part, a very good boy.  I hugged and kissed him soundly several times without suffering any consequences.

When I got home M and I took a long nap and then stayed up til almost 2am.  Today feels like it should be Monday (because we took Friday off) but then neither of us has Martin Luther King Jr. Day off.  It all balances out, but today I’m cooking homemade something and relaxing to episode after episode of All in the Family (speaking of Martin Luther King Jr. Day).

Watch my favorite part of my favorite episode.  I can watch it over and over.

‘Twas a good weekend.  I am appreciative.

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the fool on the hill

Posted in Anderson School, autism, The Anderson School for Autism, trains, tagged , , , , , on April 1, 2012| Leave a Comment »

“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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zoom focus: the scare-me-nots

Posted in Uncategorized, tagged , , , , , , on January 7, 2012| 2 Comments »

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.

– – –

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.

– – –

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

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circle pepperoni

Posted in Uncategorized, tagged , , , on January 5, 2012| 2 Comments »

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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we survived the 8-23-11 5.9 earthquake

Posted in Anderson School, autism, swimming, The Anderson School for Autism, Uncategorized, tagged , , , , , , , , , , on August 24, 2011| 5 Comments »

Everyone in my office felt it, even way up here in Albany, NY.   I thought of Jonah and wondered if he was feeling it too –  the wavy, hula-hoop, on-a-boat feeling I’d never felt so strongly before, not ever having been a California girl.  They’re already selling t-shirts about it.  One picture I saw depicted the D.C. “earthquake devastation” – that one made me laugh out loud.

Yesterday was also Andy’s birthday.  I  made him a photo frame set with a bunch of pictures of he and Jonah.  He’s moved down to an apartment in Rhinebeck already; yesterday I called a bank and locked in a 3.5% interest refinance on a mortgage so I can keep the house and give Andy his share.  I am glad, and a little jealous, that he is so close to Boo. 

My mom and I and Andy are all going to go to Jonah’s school on Saturday and visit him for the first time since he was admitted on the 16th.  I hope it goes okay and he doesn’t want to come home with us.  Either Andy or I call every day to ask questions about how he’s doing.  If he’s crying for daddy or mama they do not tell me, and I don’t ask.  They generally tell me about aggressions, if there were any (yesterday he had none at all) and what he ate, and how he ate, and what he did.

Most of the direct care workers sound almost nonchalant when they tell me about his day, which is both comforting and unsettling.  I guess he is blending in well and yesterday I even asked “do you guys like him?”  They say yes, we do – he’s a great little boy.  I want so much for them to like him, hug him, teach him, nurture him.  I want warmer weather so he can swim, diving deep to undulate along at the bottom of the pool like he does so expertly.  I want them to cover his face in kisses, chase him on the playground, play music for him, and put lots of bubbles in his bath.  I want them to grow to love him.

There are no new pictures today so I’ll dig into his babyhood to post two cute ones:

Pissed off Boo

Charmer Boo

Everything remains surreal.  I am, for all intents and purposes, abruptly unmarried and childless.  I know I am still Jonah’s mother but no longer am I involved in his daily care at all.  It takes an enormous amount of trust to remain calm and collected about the placement of his little body, mind, and soul to a group of strangers, albeit professionals in the field of autism.  I trust and hope and believe this is right, this is the right thing, he will get better there, he will thrive.

There are no atheists in foxholes, and this is mine.  Not that I was an atheist before, but I’m sure praying more and calling on my peeps gone before me – all those hawks and deer, my grandparents, God, Mary, “and all the angels and saints,” as we Catholics say, to watch over Boo and keep him safe and happy.

Please.

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boston children’s hospital

Posted in autism, behavior, doctor, Uncategorized, tagged , , , , , on July 3, 2011| 3 Comments »

Andy and I Jonah and I left Albany at 6am last Tuesday to bring Jonah to Boston Children’s Hospital for a 9am appointment with a pediatric rheumatologist (because even though we live in the pretty little capital city of New York State, there are zero pediatric rheumatologists here).   Jonah has been limping and was clinically diagnosed with pediatric juvenile arthritis based on other health problems like synovitis in his hip and jaw, and iritis/uveitis in his left eye.

In February of 2010 little boo had an operation on that eye to replace the lens, and they implanted something called Retisert to constantly dispense small doses of steroids locally.  When we got him home and the anesthesia wore off completely, I took a picture of him in his misery.  I guess I wanted to record it while desperate to alleviate it.

I hate this picture.

This was the only time in his little life that he verbally expressed pain to us:  eye hurt, he cried – just once – as if agony could forcibly pull language out of him.

We gave him medicine and I rocked him in my arms, wishing I could fix everything.  Turns out we can’t fix his arthritis either – but it’s mild, they told us, and naproxen should be able to help him with his limping and any associated pain.  They told us neither his eye nor his arthritis would cause his aggressions.  Nobody can tell us what causes the violence exploding like mines inside him, timed to a schedule so erratic it has no business being associated with time at all.

The three hour trip to Boston was okay – we’d given him sedatives the doc had prescribed – and we managed to get him in and out of the short appointment without any major aggressions.  It is undoubtedly an amazing hospital, even aesthetically, complete with musical steps, bubbling walls, and God knows what else we didn’t see because we were in and out of there so quickly.  On the ride home we had to pull over three or four times because Jonah went bezerk.  Andy ended up in the backseat with him, holding him, getting his own arms scratched to hell.  There was virtually no conversation there or back.  We were collectively frazzled – got back into town around 3.

After I dropped Andy and Jonah at the house I went home to my apartment where sweet Jack Ingalls was waiting,

and I lay across the bed, trying to make myself think of nothing.

“The things that I’ve loved; the things that I’ve lost
The things I’ve held sacred that I’ve dropped
I won’t lie no more, you can bet
I don’t want to learn what I’ll need to forget…”

~ Audioslave again, “Doesn’t Remind Me”

I can’t write anything else right now.

I’ll come back.

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