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Posts Tagged ‘Capital District Parent Pages’

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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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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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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For those of you who don’t read the Capital District Parent Pages, in which I write an article every month (even though it’s undoubtedly the “bummer” of the monthly magazine, surrounded by articles about harvest and hay rides and Halloween fun), here’s my October article.  I wrote it in early September; the deadline is the 10th of the month for the next month’s issue (which means I’m working on November’s article right now):

Normal is a Dryer Setting – October 2011

As I write this, Jonah’s been living at an educational residential facility for children with autism (what they used to call a “home”) for almost a month.  The day we dropped him off and drove away was perhaps more agonizing for us than it was for him.  At least that’s what everyone kept telling me.  At least that’s what I needed to believe.  The last glimpse of my boy’s shirt was the most difficult thing to see; the impulse to run after him was the most difficult thing to fight.

Of course we called that first night to ask how he was.  I wonder if the staff hides the worst of the news when they tell parents what happens after they drop off their child.  “He cried for a little while, but then he was fine,” they say, probably perceiving we don’t really want to know the details anyway.  We’ve played out the details in dozens of different scenarios since the day we found out he’d been admitted.

Honestly, the anticipation of Jonah’s leaving was by far the worst part for me.  The countdown.  Once he was there, I hoped he’d get more comfortable and acclimated every day.  He even talked to me on the phone the day after he’d been admitted; “I love you mommy,” he said. “I miss you.”  I could hear a care worker in the background prompting him, but it was so good to hear his sweet little voice that I just relished the words.  Jonah’s never been a phone kid and, at best, tolerates whatever you’re singing or telling him for maybe six seconds before handing off the receiver.  It’s not like he will hold a conversation anyway.  We’re just now celebrating the fact that he’s starting to say “yes” when he wants to answer in the affirmative instead of merely parroting back what you’re offering him. 

I miss him.  I remember his hugs and kisses, his scent.  I remember how his eyes lit up when he saw a train go by.  I remember chasing him down a path in the woods and letting him throw woodchips and tiny pebbles into the air. Gleeful Jonah.  Unable to bother anyone, and away from all the rules.

I have to remind myself of the bad things.  We couldn’t help him on our own.  He was going to hurt someone, or himself.  Bad.  He’d already kicked his leg through a glass window during a tantrum.  Scratched and bitten and bruised Andy and me, over and over.  Screamed in our ears.  Broke our glasses repeatedly.  Threw plates and spit soda, escaped from his car harness to attack us when either of us was driving alone with him.  Shoved my mom’s TV over, smashing it to pieces.   I have to remember.

Andy or I call every night to see how his day went, and for the first few days Jonah was unsettled, but now he seems to be getting on board with the routine of the place.  His caregivers seem like genuinely caring, invested individuals.  They say he eats very well, works puzzles, smashes clay around, and is fitting in at the house, where his room is blue and he has two windows overlooking the pretty grounds. 

 He likes to take long walks around the entire campus, they tell me, and he adores the playground.  They e-mailed me two pictures of him with big smiles.

He’s been swimming, of course, and has had only a few aggressions (and one dinner-throwing incident). 

So far I’ve been to visit him twice, and as heartbreaking as it is to leave him behind, it is wonderful to look forward to seeing him again the next time.  I trust we’ve done the best thing.  Not for us; for Jonah.  To give him the best chance for independence, growth, wellness, and learning. 

 And, most importantly, for happiness.

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For the September issue of the Capital District Parent Pages, I thanked Wildwood School.  I will never be able to repay what they have done for my son and my sanity.  Always I felt supported.  Always I knew they were doing their best with Jonah, with all the kids, treating each like an individual.  The school year has started at Wildwood and Jonah’s not there. It’s surreal.

For those of you who don’t read the magazine, here’s the article I wrote:

Normal is a Dryer Setting

September 2011

Autism: When your child is diagnosed, you’re abruptly initiated into a fraternity of parents, all asking questions for which there are no straightforward answers.  Before you have a chance to fully comprehend what’s happening, you’re hurled into a world of acronyms, specialists, and an array of treatments – most different, some opposed to one another, and none guaranteed to alleviate the symptoms of this mystifying condition.  It’s no coincidence that the autism awareness ribbon has an array of colorful puzzle pieces on it.  Like a rainbow, the spectrum of autism spreads across the population and manifests itself in a million different ways.  If you’ve met one child with autism, you’ve met one child with autism.  And yet their individual colors are beautiful and bright.

We are lucky; Jonah was diagnosed and received special education intervention services early.  Just before he turned three, I visited special education schools all over the Capital District and was especially impressed with Wildwood School.  When we enrolled him, we had no idea how lucky we were to snag an opening – oftentimes there’s a waiting list.

In the 6+ years Jonah’s been at Wildwood, we consistently encountered teachers, social workers, and staff with an amazing dedication to the nurturing of each individual’s learning potential.  We watched as his speech teachers worked tirelessly to draw language and other communication from him.  We loved hearing about his love of rhythm, music, and performing.  To this day he can speak only in short phrases, but can sing whole songs  – usually Guster (since that’s what mama plays in the car all the time).  We laughed as he once stole the mic (and the stage) at an annual concert amid the mild chaos that’s normally the backdrop for these events.  Nobody minds.  There is solidarity there.  We all understand the shrieks, bouncing, flapping, and whatever other mayhem.

Every year Wildwood has a “moving up” ceremony for each class.  This year, Jonah’s “moving up“ ceremony was also a “moving out” ceremony; instead of returning in September, he’s moved to  residential educational placement an hour and a half away.  At first I had no intention of attending the ceremony.  For one thing, it’s painful emotionally, and I also figured he’d go all violent on someone/everyone, hurting people, screaming, caught and restrained.  But then I decided, if the people at Wildwood are determined to include him, I can’t ignore their efforts.  And so I decided to go.  Not surprisingly, they had a plan for Jonah.  Until it was his turn to walk onto stage, they wheeled him around in the hallway on his “scooter,” keeping him calm.  At the last moment they got him off the scooter, opened the auditorium door, ushered him through, and guided him onto the stage, where he was handed a rolled certificate. The MC gave him a verbal accolade, best challenge of the summer or something I don’t remember.  I was too nervous.

I’m so glad I went.  I got two decent pictures of him accepting his “diploma” with a look of confusion on his face.  In one of the pictures he’s looking right at me; I can almost hear him:  hey mama?

On the way home from the ceremony, I realized what makes Wildwood such an excellent school.  When things seem hopeless, they hope anyway.  When there is no way, they find one.  If a method doesn’t work, they try another.  Determined to nurture the children and young adults in their care, Wildwood School is a place where individuals are guided to reach their greatest potential.

I will always be grateful to Wildwood School for advancing their vision:  …”a world that embraces a fundamental respect for ALL people, their strengths, their uniqueness, their creativity and the infinite diversity that we each represent.”

Thank you, Wildwood.  May your kindnesses come back to you a thousand fold.

Love,

Jonah Krebs and his family

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I’ve been writing monthly articles in the Capital District Parent Pages for almost a year now and the August column was the hardest one I’ve had to write yet.  How do I say what’s happening?  I edited it about ten thousand times.  The issue came out today.  For those of you who don’t get the Capital District Parent Pages, here’s what I said:

Normal is a Dryer Setting

August 2011

Well, here we go.  Sometime during the week of August 15th, Andy and I will drop Jonah off at an educational residence for children with autism; he’s been accepted in both an appropriate house and classroom there. 

It’s a beautiful campus.  Really. The classrooms are cheerful, the staff is engaged, the kids look happy, and the children’s residences are real houses – immaculate duplex-like homes where Jonah will even have his own room.  There’s a recreation center and a big pool, and Jonah will be able to go out into the community, to movies and restaurants, playgrounds and museums.  He can’t do those things anymore here.  I know in my heart that Andy and I can’t provide the therapies he needs; this is Jonah’s chance to truly thrive.

I must sound like I’m trying to justify our decision, to convince you we’re not throwing our child away.  The truth is I have no idea how to do this thing.  I have to believe Jonah will be protected and happy.  I need to imagine him learning and laughing.  There is no other option if we are to drop him off and drive away.   In the meantime, I cry.  I have nightmares, nagging thoughts of negative scenarios.  My head fully understands the necessity and wisdom of moving him there, but God, my heart.  Each day is another day closer to that inevitable day, and my heart mourns.  I’m grieving for him even though he isn’t yet gone.

I’m going about it all wrong, I know.  What you focus on expands, they say, so I’m going to stay focused on the good stuff – like giggling when Jonah, apropos of nothing, invents a goofy phrase.  Or hearing him shriek with delight when his lithe body hits the surface of the swimming pool.  And chasing him around his bedroom with a towel to wipe away bath bubbles still clinging to his body.  Watching him sleeping, tranquil, his breathing slowed and deep…pressing small kisses into his cheeks…inhaling the little-boy-scent of his tousled hair. 

I‘ll concentrate on shopping for things he needs for his room.  I’m splurging on the best of everything there is – Egyptian cotton sheets and thick, luxurious bath towels in bright, primary colors.  A late-afternoon-sky colored comforter with a floor rug to match.  The softest blanket I could find.  I want him to be comfortable. 

I’m making him photo albums he can’t rip and filling them with pictures of all his relatives, the people and animals he knows, and the places he’s been.  I want him to remember his loves.  I want to be able to explain to him what is happening: mom and dad will be back, and this is a new and exciting place to grow, play, and learn.  I’ll write a social story – something often utilized to explain a concept to kids with autism using short sentences accompanied by pictures. 

Everything changes.  This is a new chapter in a new book.  Maybe even a whole new library.  I’m grateful to everyone who has made places like this available – and so much better than they once were.  I’m grateful to those families who’ve endured tragedies and had the courage to turn them into advocacy for things like access-to-information laws and changing the system for the better, to protect my son and others like him.  I’m grateful I live in a country where services are provided for people with disabilities, and a state in which lawmakers now recognize the importance of ensuring safe educational residences for people who need them.  I’ll never complain about taxes in New York again.

Still, though, it’s all so surreal and unthinkable.  I want to be a parent advocate for other people going through this process.  If I can be a comfort to just one other family, it will help.  The knowledge that you are not alone in something is invaluable; I know I’m buoyed by the parents I’m in contact with who’ve had to do this too.  

As Jonah goes away, I will be visiting him as much as possible, ensuring he is happy and safe, and loving him with more strength than I ever have before.  So goodbye for now, little boo.  Once you are in the hands of a round-the-clock team of specialists, you will bloom into the best boy you can be.  Your mama knows you are bright and silly, fun and eager to learn.  You show ‘em, sweetheart.  They’re going to love you.  I just know it.

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So it’s Thursday June 9th and I’m on a next-day deadline to submit my monthly column in the Capital District Parent Pages (though I’ve had a whole month to write it).

I’m sitting there thinking how strange it is that I write a column about a boy with autism who has become so violent we are planning to take him to live in a residential facility, and how the column is smack dab in the middle of a magazine featuring witty anecdotal tales of family life, articles about events, pages filled with fun places to take the kids, seasonal recipes, ideas for birthdays, and other parenting goings-on.  Sometimes I wonder why they even let me write the column.  I’m the bummer of the issue.  Hands-down.

And I’m thinking I don’t want to be the bummer of the issue this time (for the July issue).  So I sit there, and I sit there, but I don’t know what to write.

I haven’t even written here for a week.  How many times, after all, can you say the same thing with only the slightest of variations before you start to sound like a broken record?

It hits me that I could look backward, and so I write about times when he was a baby.

The words come quickly – it doesn’t take me long to finish.  They’re easier words because they are about the short span of time in which I had the same parenting experience everyone else had, more or less.

It’s not that Jonah has autism.   It would be fine, really, if only he didn’t get so enraged so quickly – become so unimaginably angry, so inexplicably aggressive.  Sometimes I feel as if I have done nothing for 41 years except bring a child into the world who is hell-bent on hurting others.  I almost can’t stand it.  I don’t want to stand it.  I want to stamp my feet like a small child and scream.

When I lean in to kiss him, more often then not I get scratched or grabbed by his whole hand on my face.

Einstein supposedly said that one definition of insanity is doing the same thing over and over and expecting different results.   Some think he himself had some form of autism, but whatever the case, I still will lean in for the kiss.  It’s not that I’m expecting a different result.  It’s that I need a different result – and if I can get his sweet little kiss one time out of five, it is worth the other times.  I just want to be his mommy.

I don’t know my son anymore at all.  I don’t know why he hurts me (or Andy, or his teachers, or anyone).  I don’t know how Andy is staying afloat.  I don’t know how one or both of us is not back in Four Winds.  I’m no good at this.  I’m weak, depressed, and always, always afraid.  And there we go, folks, the record’s skipping – – you’ve heard it all – heard it all – heard it all before.

And so you see there is very little I can say these days.  I apologize if you have tried to reach me and I don’t write/call back, or you invite me somewhere and I say I can’t go.  It’s not like I have a great excuse except I just don’t want to talk about anything to anyone right now.  And I’m sorry for it.

I am not strong enough to leave it all behind me whenever life calls for socially acceptable behavior.  I know so many strong, determined, one-day-at-a-time parents in worse situations who operate on such a higher wavelength than me – who don’t bitch, or complain, or let on to anyone that there is anything amiss at all.

That’s not me.  I never was the sturdy one.  I’m the cry-baby.  I’m the one who crumbles.

And thus concludes today’s whimpering.

“Dorothy moves to click her ruby shoes
Right in tune with the dark side of the moon.
Someone, someone could tell me where I belong;
Be calm, be brave, it’ll be okay…”

~Guster, Come Downstairs & Say Hello

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