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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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postcards to jonah

Posted in Uncategorized, tagged , on January 6, 2012| 5 Comments »

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.

 I LOVE YOU

 Mommy

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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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2011 in review

Posted in Uncategorized on January 1, 2012| Leave a Comment »

The WordPress.com stats helper monkeys prepared a 2011 annual report for this blog.

Here’s an excerpt:

The concert hall at the Syndey Opera House holds 2,700 people. This blog was viewed about 48,000 times in 2011. If it were a concert at Sydney Opera House, it would take about 18 sold-out performances for that many people to see it.

Click here to see the complete report.

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residential educational facility

Posted in Anderson School, autism, behavior, doctor, placement, The Anderson School for Autism, Uncategorized, tagged on December 30, 2011| 4 Comments »

“Jonah lives at a residential educational facility for kids with autism” is how I say it.

Innocent conversation-starter questions at networking events or out in this bad, bad world*:  So Jonah is 9?  Is he in 3rd or4th grade?

I almost always tell the truth, and it sounds like a carefully phrased script constructed to confuse with alliterative, technical-sounding words that hopefully distract the listener while I try to usher the conversation elsewhere. 

Jonah’s at a residential educational facility for kids with autism. 

I’m not trying to be politically correct here, though of course it must seem it.  It’s just that any alternative phrasing feels awful. “Jonah lives an hour and a half away from me, cared for by strangers I have no choice but to trust because his kind of autism comes with behaviors so severe it was unsafe for everybody to keep him at home.”

What else could I say?  “My son’s at a school for kids with autism,” I guess would be okay, but it lacks that alliterative technical-sounding distraction technique and, instead, seems to always invite more questions.

Luckily most folks then let me take us on to “so you went to school for marketing?”

And then, later, I allow myself to wonder what Jonah would be like if he were in 3rd or 4th grade, just a regular kid at a regular school.  Would he still love the water, and celery, and tight hugs and car rides?  Would he be good at different things?  Would we go places and do things together?  Bake and hike and play games?  I get the feeling I’m over-romanticizing regular kids.  You get what you get.  And everybody gets their share of shit.  It’s just sometimes I feel like mine’s smeared all over me.

There are times I don’t talk about because I’m ashamed of them, the times when I forget.  It used to be for a minute, then an hour, then a day.  What I forget is how bad it was, how scared I was all the time, what despair and dread we lived with day after day after God-awful day.   I forget, and then I feel relief, and I tell myself that Jonah is well taken care of and in the best possible place, with his father just 5 minutes away.

I forget, and I am relieved, and I am ashamed.

If I were a born-to-be-a-mother-mother, one of those special people some folks say I am, I’d have found a way to keep him home with me, protected and loved.  No matter what I had to do, no matter how expensive.  No matter if I had to get a second job to pay for a 24-hour personal aide, an autism service dog, a kick-ass nutritionist.  A behavior analyst – Harvard valedictorian, class of 1988.  Some Superdoc who will fix all his violent behavior.

Not everyone should have kids.  It shouldn’t be an expected order of things:  High school.  Then college.  Job.  Engagement.  Marriage.  Buy house.  Have 2.5 kids.  Work until you retire.  Wish you had something to do, wish you still felt important to the world.  I may not understand it fully but I feel it coming, all this being pushed off the planet by the next generation and the generation after that and the generation after that.  Everything starts to confuse you and technology feels exponentially rapid now.

So maybe I shouldn’t have had kids.  The truth is I just really, really wanted some unborn child to have Andy for his/her father.  Unfortunately I was also selfish enough not to realize it probably shouldn’t have been with someone like me.

I don’t mean to sound whiny or crazy.  UGH.  Should I post this mess?

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zoom focus: the book barn

Posted in Uncategorized, tagged , , , on December 29, 2011| 1 Comment »

Zoom Focus: a Kids-Eye View of the Capital Region

That’s what I’m calling my new column in the Capital District Parent Pages.  My idea is to highlight smaller, not often noticed/branded companies or people or services offering something cool, family-related, and preferrably philanthropic, here in New York’s lovely (but currently cold) Capital District Region.

Here is December 2010’s column: it’s not my best writing but I gave it a shot; reporter-type writing isn’t my forte…

Zoom Focus: a Kids-Eye View of the Capital Region

By Amy Wink Krebs

 The Book Barn Celebrates 20 Years as Local

Treasure Trove of Children’s Books – and More

If you’ve never been to the Book Barn and you like books, I implore you to put down this paper and get yourself to Latham.  From the Traffic Circle, travel east two miles or so on Route 2 toward Watervliet, and turn into the plaza across from Stewart’s, just past the traffic light.   There you’ll find the biggest, most organized, well-stocked, best-priced, highest-quality used book store I’ve ever seen; with its ever-changing inventory of mystery, romance, classics, history, cookbooks, self-help, memoirs, photography (the list goes on and on) and –of course – children’s books, this place is bibliophile heaven.  Add to that the knowledge, intellect, and courtesy of Dan Driggs (co-owner, with wife Cheryl) and we’ve got ourselves a local gem.

To keep a used bookstore alive and thriving for 20 years in a world of big box bookstores and e-readers is no small feat.  Dan does it simply, by offering an ever-changing inventory of excellent condition (or better), gently-read books at incredibly low prices.  He’s old fashioned.  He won’t be offering you a frappacino and he doesn’t host a book club.  You can’t buy a gourmet candy bar or an oversized mug at the counter… but you can have a free lollipop and, if you’re lucky, a story or joke.  This is a man who sells books, and well; he loves what he does and it shows.  Without any inventory system, he can almost always tell you whether he has any particular book in stock. 

Some of my favorite authors are young adult authors – Paterson and Cormier, Paulsen and Lowry – so when I visit the store, I usually walk straight back to the Kids Korner, where at any given time there are literally ten thousand children’s books, all in awesome condition.  Board books, chapter books, series books, young adult novels, and others line the shelves – children’s books priced at $1.75, $1.45 – even 95 cents.  There are two big bins where I’ve found like-new copies of Little Golden, Maisy, and other great pre-schooler and early reader books.  Dan’s even got an impressive collection of comics, all priced at just 75 cents each.  “I just want a kid to own and read a comic if he wants,” he diffidently admitted.

Dan’s placed a few vintage wooden school chairs, table, and a little desk in the Kids Korner, creating a comfortable, child-sized place for youngsters to browse and sample.  I met eight-year old Briana Benson from Stillwater there this day.   “What do you like to read?” I asked her.  She smiled and shyly showed me “In Search of the Saveopotomas.” 

One great thing, of course, is that there are between 500 and 1,000 books shelved in the Kids Korner every month.  Dan is constantly updating his inventory, so The Book Barn is quite literally never the same store twice.  And every  year, Dan stocks up on Shaker High School’s required summer reading so he’ll have a nice inventory of what’s on the list. 

Most days when I visit, I pile books high in my arms, unable to stop myself despite my best intention to get “just one book.”  In a big box bookstore I’d easily be well into the hundreds of dollars, but at The Book Barn I can buy a dozen or more paperbacks for a fraction of that.  Some of the books I’ve bought have spines unbroken and are in gift-giving condition.  And the holidays are coming!  The care Dan takes with handling, cleaning, and shelving his books is remarkable, and the prices unbeatable.  If you haven’t been there, you’re missing out.

 Congratulations, Dan and Cheryl, for 20 years of independent ownership success at the Book Barn! 

 The Book Barn, 786-1368, is open weekdays from 10-8, Saturday from 10-6, and Sunday from 11-5.

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july 30th

Posted in autism, grandma, singing, singing, Uncategorized, tagged , , , , , , , , , , , , , , on December 26, 2011| 3 Comments »

On Christmas Eve I went with M to return a fixed computer to a man’s apartment; the guy had autism and softhearted M had done the work for free.  The man had all these vinyl albums hung on the walls, and each album had a painting or design on it.  In another room he’d constructed 3-D sculptures from popsicle sticks and fuzzy dots and crafty pieces of all kinds of things.

It was all very cool.  He had so many books and so much music.  Joseph Heller and J. R. R. Tolkien, Mario Puzo and Thomas Hardy.  His music was eclectic:  Eric Clapton, The Beach Boys, Gordon Lightfoot, the Soundtrack to Grease.   And he was very happy to have his computer back in time for Christmas.

He would ask random questions of us, and he could make good conversation.  I asked him if he had brothers and sisters, and then he asked me.  M and he were both the youngest, they discovered.  I  asked him about his music and books, and the artwork all over.  “Oh, yeah,” he said enthusiastically.

“Were you born on July 30th?” he asked me.  “1969,” he added:  statement, not question.

I smiled.  “No, but close.  September 2nd.  The 1969 part is right.”  Then I asked, “When is your birthday?”

As if thinking weren’t you listening? – he said “July 30th, 1969!”

I liked him.

While we were there his mother called.  Then he said his counselor was due to come over soon, so I asked him directly, “are we all done or do you need any more help?”

“Oh, yeah,” he said in the same enthusiastic voice.  “We’re all done.”

Good thing I’ve read The Speed of Dark by Elizabeth Moon, because I don’t have a lot of experience with adults who have autism, and that book helped me see things through his eyes.  You have to be pretty direct; subtleties and metaphors get lost.

That sounds like a Paul Simon song:  Subtleties and Metaphors.

Andy brought Jonah up to my mom’s house on Christmas Day and then kept him for a long time after that.  Jonah was very good at my mom’s, even though he paced a lot and wanted sandwich and bath and car ride in rapid succession, caring nothing for the presents.  He is indifferent to everything related to Christmas except perhaps the lights and songs.

Definitely the lights and songs.

I am kind of okay, but for a while I couldn’t write because I was re-visiting the necessity, safety and camaraderie of last year mid-December, when everything changed forever.   I love those peeps, even if I did only know them (in person) for 8 days.

Thank you to everyone who has written.  I just don’t get to my e-mail as much as I want to.  I read them but then I can’t reply.  I hate bitching about shit, and I’m always bitching about shit.  Today my mom and I spent hours sorting through like 15 bags of clothing into donation and keep piles for Jonah.  I was agitated and tired.

I wanted to clean today.  I cleaned and cleaned and organized and cleaned.  There is still too much.  I keep thinking of the man who was born on July 30, 1969.

It occurs to me that we are equidistant from Woodstock.

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closer

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

My article for the next Capital District Parent Pages is due on the 10th and I haven’t written it yet.  Puts you right back in a school mind frame, with deadlines for essays.  Since I love to write it’s actually cool.  In college I used to amaze my fellow English majors by completing my essays the night they were assigned, though the professor had given us 2 weeks.  I never told anyone, but the thing is I wanted to write the essays.   (Plus there was the added benefit of getting it done when everyone else waited until the last minute).

Then I think further back, to high school, and I remember about Mr. Fleischer, and can’t stop thinking of Mr. Fleischer, and I say to myself he is gone, he is gone. 

After 4 years of chorus in high school, I sang in college chorus all 4 years as well.  And yet, God help me, I don’t even remember our college choral director’s name.  Of course that was 20 years ago, but still it underscores the impact of Mr. Fleischer on my life.  Every online moniker I’ve had has been winklett because it is the name he gave to me.  That choral director in college….he was pretty good, but that’s it.   Funny how I expected him to be more.   Mr. Fleischer set that bar very, very high.

Now that I am thinking of Mr. Fleischer, all these memories wash over me.  Like how I loved being in the chorus room and spent as much of my day in there as possible.  I even ate my lunch there; Mr. Fleischer never minded (unless we left a mess behind).

In the chorus room I could avoid people who made fun of me for being skinny.   The kids who hung out there were fun – even the cool ones.   There were these boys who formed a comedy routine/band:  The Four Neat Guys.  They were awesome.  I remember they did George of the Jungle….there’s more, on the tip of my memory.  I remember a kid who could recite the entire movie Monty Python & The Holy Grail.   But there weren’t any bullies.  It was a sanctuary.  I want to crawl back in.  I haven’t seen Mr. Fleischer in years, and yet I’m mad that he’s been taken away from me.

I’m mad about Jonah, too.   Mad at my helplessness.  Mad that I couldn’t raise him anymore.  Mad that I can’t smother him with kisses.  I think of the kid in that book The Curious Incident of the Dog in the Night-time and how he would only touch the tips of his fingers to his father’s – it was the only physical contact he could stand.  Andy gets frustrated with me when I get too close to Jonah right away – and I know he is right – but  I want to hold him, hug him, squeeze him tight.  I want to put out wings and cover him.

He’s an only child, now one of 8 kids in a family of rotating caregivers.  I want them to love him,  unconditionally, and that’s an unreasonable thing.  I can’t help wanting it.  I don’t care.  Some days I think this has all gone on too long now.  Some days it is all I can do not to drive there and snatch him away.  But I know I can’t take care of him either, and it would be doing him a terrible disservice.  I need this to be the case and I hate that it’s the case.

Most Saturdays he and I will sit in the back of his dad’s SUV and sing “Cranberry Guster” songs, and always after a while his eyes silently ask why, mama?  Then a few moments later, he begs me in his little-boy voice:  “home?”

Sometimes he asks it two or three times.

I think he is beginning to ask it out of habit and not so much as something he can actually hope to expect.

Here are some pictures I took of him this past Saturday:

my face against the window

beloved bath-time

swinging with his silly hat

gazing into the mirror:  jonah is closer than he appears…

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geek rock paradise

Posted in Anderson School, autism, grandma, singing, Uncategorized, tagged , , , , , , , , , on November 30, 2011| Leave a Comment »

I love Guster in the same inexplicably passionate way I love very few other things.  Laura Ingalls Wilder.  Elfquest.  My beloved books, some that I’ve read dozens of times.

I’ll never forget the winter of 2002-2003, the first time I heard Guster – in the car, rounding the bend of Buckingham Pond, on EQX: the song was Barrel of a Gun.  I forgot about wherever it was that I was headed and went straight to the closest music shop.  I didn’t know the name of the band or the song, so I sang it to the guy behind the counter.  “I have to have this,” I demanded.  He nodded in an okay, just please don’t hurt me way and, luckily, knew just what I was singing, so was able to provide my first Guster CD:  Lost and Gone Forever.  I’ve been hooked ever since and have, quite unapologetically, seen 9 or 10 shows now.

My ability to expound on Guster in an uncool fashion really warrants its very own blog, so I won’t torture you too much about it here.  Suffice it to say that I was incredibly excited to be able to see them 2 nights in a row, on Black Friday and Whatever They Call The Saturday After That, in Montclair, NJ at the Wellmont Theatre.

First, though, was Thanksgiving.  My mom, God bless her, made a whole dinner – some for M and me and some for Andy.  We drove down together to see Boo and bring him to Andy’s apartment, where we all had turkey sandwiches and black soda for lunch.  Jonah took his usual two baths while we were there…

Jonah, of the water

…and then we took Boo for his regularly requested car ride? and came back to the apartment.  My mom and I left after Jonah’s second bath and another request for car ride.  During car ride I asked Andy to put Guster’s Easy Wonderful in the CD player, and Jonah and I sang songs in the backseat, moving our clasped safe hands up and down to the rhythm, singing the oooo-oooo-oooo-oooo-oooo part of Architects and Engineers like two little grinning goofballs… Jonah bursting out in a laugh every so often.  He loves Guster too now.  Score.

I like to joke that I have a bachelor’s degree in Guster and am working on my Master’s.  I know to bring canned food and ping pong balls to their shows, and I know better than to try to win the “meet and greet the band” prize after the show.  One time when I set out to win (and did win, by bringing box after box of food) the opportunity to meet and greet the band, I brought them a gift bag full of cookies and goodies, a mix-CD, and a letter that undoubtedly said something very very geeky.  Brian-the-drummer came out first after the show, and tears came to my eyes.  I was barely able to choke out “Your music makes me so happy” before I abandoned all hope of appearing normal, shoved the gift bag at him, began to cry, and ran away.  Fail.

But the shows were both fantastic, each featuring a different song off their first album, Parachute.  They almost never play songs off Parachute live, and they said it had been something like 18 years since they’d played either song.  To those of you who may be reading and knew me in high school:  nothing’s changed.  I’m still the geeky girl.

So here are some pictures of the shows.  At one point Ryan put a disco ball on his head; all the lights hitting it made the whole place a big disco – always the whole band and crowd laughing, dancing, joyful, energized by some cool twist on every song.

Adam on the horn

Ryan singing and jamming

All the Gusters

…and Ryan with his disco ball head.

I want to bring Jonah to a show.  I hope someday I can.  If not we’ll just keep on singing Guster songs.

While I was in New Jersey I was contacted by A.H., another beautiful singer from Shaker High School.  She said that a group was getting together that night (Saturday) to reminisce about Mr. Fleischer – but I was a state away.  Shit.  I would’ve loved to see everyone (and beg two or three people to sing).  I am so touched by the comments my old peeps, and Ned’s old peeps,  have left me.

Lives intertwined.  It’s all so amazing, this world and how it works.

P.S.  Jack and Almanzo are buddies now.

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that is all

Posted in Uncategorized on November 28, 2011| Leave a Comment »

Give what you have. To someone, it may be better than you dare to think.

— Henry Wadsworth Longfellow

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