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Posts Tagged ‘Albany’

fail

I guess I’m one of those people
who have a difficult time this time of year,
when everything is dark
and the days fly quickly
from one night sky to the next
in a foggy blur of countdown-to-Christmas,
the December rush and push and prepare
and pressure at work to do very well
at a very hard time of year to do well at all.
None of it feels okay to me right now.
I’m panicky, quivering.

I feel beaten down.

It’s almost too difficult to get into the whole Jonah mess but then, after all, this is a blog about him.  Last Thursday the school called to tell us he fell off a chair and had a few scratches on his back — but when we picked him up on Saturday he had a huge bruise on his buttock and a smaller one on his l0wer back.  I guess the nursing department felt they didn’t need to inform us because it was all part of the same incident they’d already told us about, but nobody at his house told us anything either, so we were shocked when he wanted bath and we saw him all black-and-blue.  I would post a picture but for fear of some sick pedophile looking at it for kicks.  As it turned out, the house caregivers thought the nursing department had told us.  They were sincerely concerned and, in fact, the nurse had just checked on Jonah Saturday morning before we got there.

Earlier in the week we’d learned Jonah has been without his Humira because of a delivery problem, and that they’d called his doctor who said it was okay if he missed a dose.  Turns out the “delivery problem” was that Caremark, the pharmacy folks who deliver his meds, would not release the medication until a $2,077 copay was remitted.  After taking a half a day off on Thursday to make calls and figure this out, I managed to get the name of his new Dutchess County Medicaid worker, but had to call about 7 times before I got her.  Usually the phone is busy, and sometimes it rings and rings until a recording says, simply and harshly, “you cannot leave messages in this mailbox.”  Then I had to fax shit over to her.

Then I had to call my primary health insurance company and his school, sift through all the red tape and bullshit, and still have no answer as to why, with primary and secondary insurance, I owe a co-pay of $2,077 for every dose of Humira my disabled son receives.  So, faced with no immediately forthcoming solution, I used my credit card, called Caremark and paid them to get my son his medication the very next day.  Merry Christmas!  And all that money is just a copay, and only for whatever they consider one refill.  Supposedly there are grants you can apply for, and maybe I can see if Medicaid will reimburse me, but at this rate I can afford about one more refill before no more Humira.  I’m working on figuring it out.  Maybe he doesn’t really need it so much; there has to be some other generic medication. I should call my pharmacist cousin.

(Wait’ll I tell you about the non-refundable vacation I booked in November.  Another post).

And to top it all off, my sweet kitty Almanzo is gone.  We haven’t seen him since Monday morning.  I put posters up around our neighborhood (Beacon Avenue near Berkshire Drive, Russell Road, State Office Campus) offering a $100 reward.  Then I put an ad in the Times Union in print and online, and on the Mohawk Hudson Humane Society website.  Damn it, I miss him.   He was just getting so he’d sleep with Jack and lie in my lap so I could pet him.

O

We adopted him from the Mohawk Hudson Humane Society in (I think) July of 2011.  He was 4 then and they didn’t know what his life had been like.  I wanted to keep him an indoor cat but it was crystal clear he was an outdoor cat;  he has always longed (incessantly and loudly) to go outside.  I’d rather have a happy cat than a miserable one, even if it means he is gone from me.  He was a hunter — had such fun chasing and catching critters, mice and such (though I always hated when he got a bird).

I’m rambling, my fingers shaking over the keyboard.   I need a little blog break, maybe for a while.

Manzo, please come home.

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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.

– – –

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

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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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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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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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Jonah has an amazing sense of where he is in the world.

I don’t mean metaphorically, like knowing his place in society or within a clique of children.  I mean he literally almost always knows where he is, geographically.  From the backseat of the car, he could instruct me to get from our home in Albany all the way to Andy’s parents’ house in Valatie, 30 miles or so away, by pointing and calling out that way and this way at intersections until we’re there.  Unfortunately, Jonah doesn’t know his right from his left (but then hell, neither do I, most of the time), so I’ve got to watch which direction he’s pointing.

I’m not even sure he’s got “straight” figured out.  Sometimes I’ll ask him “which way, bunny, straight?” and he’ll agree happily: Straight!

But then I’ll go straight through the intersection and he’ll flip out, yelling  That way!  That way! A glance in the rear view mirror and I see the problem; though he said straight, he’s frantically pointing right.  He wants his favorite park and knows it’s to the right – the one he calls Number One Park, the one where he shouted penis! over and over that infamous day until I dragged him away like some hapless Gong Show loser.

Incidentally, Number One Park was the scene of another embarrassing incident just a few weeks ago.  Number One Park is at a local elementary school.  It’s one of those huge wooden structures with slides & swings & rings & ropes & tunnels all interconnected.  My favorite times are when no people come and we have the play area to ourselves, but on this day the place had its fair share of assorted kids and parents.  I sat on a bench while Jonah ran around and played.   After disappearing from view for a second, he appeared at the topmost tower.

Without warning or provocation, he suddenly cupped both hands around his face and shouted: Daddy’s gonna take you home tonight!

Then, after a second’s pause, really screaming now, he emphasized:  TONIGHT!

The park went silent for a good minute.   Nobody seemed to know how to react; some people chuckled a little.  I’m not sure why Jonah felt it necessary to announce, at top volume, that my husband would arrive that evening to bring me back to our residence, but it made me laugh till I cried.

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