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Archive for December, 2011

“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?

*I love the lady in the tutu who hands out the carnations. That would SO be me.  I want to find her and be her friend.

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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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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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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 then I remember about Mr. Fleischer and can’t stop thinking of Mr. Fleischer and saying to myself he is gone, he is gone. 

After 4 years of chorus in high school, I sang in chorus all 4 years of college.  And yet, God help me, I don’t even remember our 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.  That choral director in college….he was a very good choral director, but it’s all he was to me.   Funny how I expected him to be more.   I had only an amazing high school chorus teacher to compare him to – one who set the bar very, very high.

Funny how now that I am thinking of Mr. Fleischer lots there are all these things coming back to 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 almost every day; Mr. Fleischer never minded (unless we left a mess behind).

In the chorus room I could avoid people who made fun of me all day.   The kids who hung out there – even the cool ones – were fun.   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.  There was a kid who could recite the entire movie Monty Python & The Holy Grail.   But there weren’t any bullies.  It was a sanctuary of sorts.  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 cover him with kisses.  I need to try harder to allow Boo to come to me.

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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