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Friday, December 28, 2012

The More Things Change...

Through codeine cough syrup fueled haze I'm writing this intro to my post at Childworks today.  I wrote it before Christmas, so I'll give you the benefit of "looking into the future" here on my blog.

How'd Christmas go this year?  We had such high hopes...

And it went well, but...

I posted this in a group on Facebook and it should give you some context:

"Croup, flu, pink eye, and ear infection are:
A) rejected reindeer names in the poem "A Visit from St. Nicholas"
B) members of the boy band "One Direction"
C) common childhood ailments
D) what the doctor says Lily is currently suffering from
E) Both C and D

Pick the answer that best fits our Family Christmas scenario."

Poor Lily was not herself.  I think we were afforded a glimpse into a "be careful what you wish for scenario".  Lily is usually so happy and spins and dances and babbles and smiles and you just wish she'd slow down for a minute and hop up on your lap and snuggle with you...until she's so sick and so sad and so lethargic that she finally does and even while you're holding her close and stroking her hair and whispering comforting words to her whimpered replies all you can think of is, "get better, little girl, I want you jumping and spinning and babbling again.  I want you off my lap and out of my arms and happy and healthy."

So much of any of the posts I write seems to return to perspective, and learning to appreciate it, and this Christmas certainly offered a glimpse of that.

Lily's still not herself.  She looks like a prize fighter, her left eye swollen by the pink eye, but she had more energy today, and slept better last night, but she's still got a ways to go.  Now, as Leslie and I slowly succumb to whatever germ cocktail she sneezed/coughed into our faces hourly over the past week, we just hope to get everyone healed before we all run out of vacation time!

It was still a very merry Christmas!


Emma acts as Lily's designated unwrapper

Thursday, December 20, 2012

Getting Into The Act - #26acts

#26acts
#26actsofkindness
Alright, so by now you've probably heard that in response to the Sandy Hook violence some folks in social media have started this "thing" called 26 Acts of Kindness.  In a nutshell, to mourn/pay tribute/honor the victims in Newtown, you're to dedicate a more or less random act of kindness or generosity to each.  I'm horrible with this kind stuff.  I've been meaning to "Pay it Forward" for decades now.  

Social media people do all kinds of "list" type stuff.  30 days of pictures on Instagram.  I know I'll never do that.  30 days of blogs.  I just write when the spirit moves me.  And so I typically don't participate in that kind of stuff because I know I'm too scattered or apathetic.  Most of the time I simply forget about it.  

Newtown is hard to forget.  Really hard.  Especially for someone with two kids, one of whom is about the same age as the children who were murdered.  Especially for someone who is doing his best to communicate to anyone who will listen that NO, autistic people do not plan violence.  Because my daughter, who is the same age as those children IS autistic.  And seeing the ignorance displayed in writing in public directed at people like my daughter makes it hard for me to turn away.

And so lately when I've been out and about, I've been "scouting" for someone to whom I might show a "random" act of kindness.  I get that by "scouting" it's possible I'm in some way losing the concept of "random", but I've made my peace with that.  

And every time there's some reason why I don't do a little something, and the reason is never better than "I forget at the last second" or "it's more money than I have" or I lack the imagination to turn something mundane into an act of generosity at that given moment or whatever.  

Today I went to get my haircut.  I'm off for the rest of the week until the holidays, so I'm doing "random acts of Christmas preparation", but this blog post is testament to the fact that I can't even stay on task for that.  In Supercuts (because I only get top notch Salon hair styling for myself) a woman waited her turn with her son.  I gave the woman at the register my name and she told me it would be about 10 minutes.  I remembered I had a Supercuts haircut punch card.  I retrieved it from my car and returned to the store, hanging my coat from a hook and getting out my cellphone.  I sat down and checked Facebook.  Yes, Leslie, I probably am addicted.

As I sat I read blog posts and remembered.  I glanced surreptitiously at the woman and her child.  He was Indian, or appeared to be Indian.  He had a thick head of straight black hair and looked to be about 4 or 5.  I rounded up and assigned him the age of one of the victims and immediately knew I wanted to do something "kind" for the little boy and/or his mother.  

They called the little boy back for his hair cut.  A few minutes later they called me back.  As the woman cutting my hair made small talk, I tried to think of how to make this happen logistically.  I really am uncomfortable being thanked for stuff.  I don't know why.  It just makes me feel weird.  So I had resolved that the only way I was going to go through with it, was if I finished my haircut first.  This would allow me to quietly arrange to pay for the boy's haircut and tip without getting into one of those weird, "I insist"/"No I couldn't possibly accept" sorts of situations.  I just wanted to pay the bill and slink away unnoticed.

And although it was a kid's haircut.  And although it started before my haircut started, I did finish first.  I got nervous.  I was actually feeling a little jittery now that the moment had presented itself.  I hurried to the counter to pay.  

My stylist began punching numbers.  I attempted to get her attention sotto voce, but apparently I was so sotto, that she didn't hear my voce, and she continued to ring me up without glancing up from the register.  More loudly I said, "Oh, I have a haircut card, let me get it out, so you can punch the card."  

I placed the card on the counter and then said in a slightly more audible whisper, "I'd like to get the boy's haircut too."  The stylist looked up at me confused before her brow furrowed slightly and she responded too loudly (though apparently unnoticed) "I can't do that, they may have a card too."

I was immediately disappointed I couldn't pay for his haircut before realizing that the woman thought I was trying to get extra punches on my card for the kid's haircut too.  I shook my head and tried again.  I'm aware that whispers seem sometimes to carry louder than spoken words, but I did my best to stay quiet as I told her, "No, I'd like to pay for his haircut on my bill."  

She softened immediately and said (again too loudly, and again, hopefully unnoticed), "That's very nice of you."  I ignored that, hoping she'd hurry.  "That'll be $29.90."

I wanted to make sure she didn't have to pay anything.  I added $6.00 for the tip and signed the receipt.

Here's where I'm hopeless/useless at choreographed do-gooding.  I could not think of a name to dedicate the act TO.  In my defense I've watched VERY little media coverage of this.  It makes me too sad.  Also, we don't watch the news when the kids are around, and so the names typically on the tip of MY tongue are Teddy, Bob, PJ, Charlie, Tori, Jade, Beck, Robby, Andre, Cat etc. 

Also, despite the "26 Acts of Kindness" name or the hashtag #26actsofkindness, I couldn't think how to "dedicate" this.  I really didn't want to dramatically announce, "I dedicate this act to one of the victims of the Sandy Hook tragedy!"  And I didn't have a piece of paper or anything prepared (as I've seen a few folks do on Facebook or blogs).  And so I was sort of stuck.  I couldn't "dedicate" it in a way that would let the recipient know what had inspired me...so the idea that this woman might be inspired to do something nice for someone else (had she the means) is left to the Fates.  So I said loudly, conscious that if the boy was Indian, he might not celebrate Christmas, "Happy Holidays".  

"Happy Holidays," replied the woman behind the counter (who went ahead and punched my card a couple extra times), and I hurried from the store to my car.  

Inside the car I felt a little jittery but buoyed in spirit.  I know it's such a tiny gesture.  And I know it won't make any lasting difference in this woman or this boy's life.  But I also know that I wouldn't ordinarily have done it.  I wouldn't ordinarily have looked past myself or my own in buying/gesturing/supporting.  And I know too that having done it once, it will be easier to do it again.  Practice makes perfect after all.  And so maybe in the future I'll printout some little slips of paper to leave behind like receipts.  Their recipients will perhaps be reminded by the slip that someone once did for them, and so perhaps they can do for someone too.  

I don't know.  I know that it made me feel good in my heart even as I reflect on the hugeness of Sandy Hook and how bad that makes my heart feel.  

I started the car and backed out of my parking spot.  As I drove by the front of the Supercuts, the woman came out the door and I thought momentarily that she was going to chase me down and force me to take back the money I'd paid for her son's haircut.  But I'm so glad she didn't.  She simply stood there with a big smile on her face and waved to me, mouthing the words, "Thank you."  And I waved back to her with a smile that mirrored her own and said, "You're welcome."

Get into the act.  Whether for the children who died:

Charlotte Bacon, Daniel Barden, Olivia Engel, Josephine Gay, Ana M. Marquez-Greene, Dylan Hockley, Madeleine F. Hsu, Catherine V. Hubbard, Chase Kowalski, Jesse Lewis, James Mattioli , Grace McDonnell, Emilie Parker, Jack Pinto, Noah Pozner, Caroline Previdi, Jessica Rekos, Avielle Richman, Benjamin Wheeler, or Allison N. Wyatt,

Or for the adult staff who were killed: Rachel Davino, Anne Marie Murphy, Lauren Rousseau, Dawn Hochsprung, Mary Sherlach, or Victoria Soto.

Or just for your own heart and peace.  


And then encourage others to do the same.

Wednesday, December 19, 2012

Appreciating Gifts

Today over at Childswork (linked...try it and see!) I'm posting about the gifts we receive from our kids.  I don't mean the hand prints or crafts they make in school and then send home with your child for the holidays, and I don't mean the gifts you give your child money for and send them shopping with Grandparents to buy...I mean the whole "blessings" of having children kind of gifts.  It's the kind of sappy shit I don't really like talking about all that much, which means it'll probably be a big hit.  

And by "appreciating" I don't mean the whole, "Oh my god, THANK YOU, this is exactly what I was looking for!" speech people give upon unwrapping each and every apparently perfect and timely gift of socks or a sweater or whatever.  My mother taught my sister to do that growing up I think.  It never seemed to matter what I would come up with around birthdays and holidays, it was always "EXACTLY what I wanted!" and "How did you know??"  etc.  It probably fooled me for the first 15 years of my life until I got all jaded, and then it was just part of the gift opening script I knew was coming at every occasion for even the stuff that was sized wrong, or the wrong color, or whatever. 

And then when I got older and was actually working off a list complete with colors and sizes, it was less about fooling me and more about fooling my kids or something, and I'm so literal about those things that it's hard for me not to answer the whole "How did you know?" thing without saying, "Because it was on your list.  Because you told me exactly what you wanted," every time.  Actually, now that I think about it, I probably do say that every time.  This year maybe I'll change it up.  "I just totally guessed!"  Or "It came to me in a vision!"  Probably I'll catch hell about this because my sister and mother both read this blog, and it'll be before Christmas, so they'll probably change up the script proactively just to fuck with me and say something like, "What is this?  I hate this."  And then I'll have to scramble to come up with some suitable reply like, "Emma told me she thought you'd look beautiful in it.  See, Emma, I told you Gramma thought your taste sucked."  Just to make her feel guilty for playing a trick on me.  Maybe none of that will actually happen.  You have to be careful how much of what I say you actually believe.

Reacting properly to the surprise and gush of gratitude is especially hard when they buy it and wrap it themselves and then just give me the present to give to them.  Sometimes my wife does that.  She'll buy boots, because you just can't buy the right boots for a woman, unless she's a stripper, I suppose (then you just buy the tackiest boots you can find and they're perfect..."Oh Cheetah print thigh high boots that lace up the back with hot pink ribbon?  AND the 6" heels have goldfish swimming in the 4" platforms???  I LOVE them!!!"), so she picks out the boots herself.  She'll wrap them because I'm hopeless at wrapping, and then she'll act surprised for the sake of the kids when she unwraps them.  It's perfect for the lazy husband in me, because I only am required to write "To Leslie, From Jim" on the tag. 

Wow...I really strayed off topic there.  The POINT is, not that sort of appreciation.  The post is a little bit about perspective, which is a recurring theme, and a little bit about just honest to goodness surprise and bewilderment at an unexpected side effect of the whole child rearing process...special needs or otherwise.

I probably should have posted the link above, because some of you will only breeze through this anyway.  And it should link to the post so Childswork sees the traffic.  I'll go back and change that.

Anyway, here's the link:  "The Gifts We Receive"


Monday, December 17, 2012

It's NOT Autism

Recently an article was written by a mother claiming to have a child similar to the Newtown shooter.  The article doesn't flat out claim a formal diagnosis for her son, but instead "throws out some terms", one of which is "autism", and then describes behavior that, because of the reference, essentially implies that autistics are violent and disturbed.  The post went viral.  So of course every idiot with access to the internet now has at least SOME inkling in his head that autism is bad and leads to mass murder.  A blogging friend of mine, Jillsmo, had the idea of writing to her school district and just sort of laying it on the line to clarify or do damage control.  Much of this has been borrowed from Jillsmo's "template" and modified to better reflect my voice.  I sent this to the administrators and teachers of my daughter's school district.  It's more important than my usual schlock, you're free to use it or share it if you wish.
-------------------------------------------

To Whom it May Concern,

There has been much discussion online and in the news about the connection between the Connecticut school shooting and early reports that the shooter may have been diagnosed with autism. As our families and our community discuss this issue and try to find a reason for this heartbreaking tragedy, it is important to remember the following: There is no connection between planned, violent behavior and an autism spectrum diagnosis of any kind.

Autism is not a mental illness; it is a developmental disability. Autistic people may sometimes have emotional regulation problems, which are impulsive expressions of frustration and anger that are immediate and disorganized. They may lash out with threatening statements or behaviors, but these behaviors are impulsive reactions, they are not deliberate or organized plans. Once the situation has been defused, the behaviors cease. What happened in Connecticut suggests methodical planning of a deliberate and violent nature; this is not behavior associated with an autistic person.

As we grapple with the unknowable ‘whys’ of this tragedy we can speculate about the mental state of the shooter, gun control laws, the current state of our country’s mental health system, God in schools or whatever else might lend context to something so horrifyingly far outside the scope of our reason, but please know, and please share with the community and the children in your care, that even if the shooter was autistic, autism is not the explanation for this tragedy.  Autism is not a violent mental illness.  Autism is not a mental illness at all.

The stigma of autism’s association with this act does the special needs community a huge injustice and forces our community's children on the spectrum to pay the price for media misinformation in the form of fear, isolation, and bullying.  Please help our community get a clear message to the people of (Redacted).

Thank you very much for your time,

Jim,
Father of a daughter on the autism spectrum

What Are Kids READING These Days?

Lily was watching Hannah Montana.  Hannah was having her weekly "I'm conflicted about revealing the Hannah secret" issue because although her alter-ego Miley had good grades, her constant touring as Hannah meant that her transcript and application to Standford showed no extra-curricular activities.  Hilarity (or so one would assume) ensued. 

I found this episode to be particularly irritating because Miley, exhausted from travel, asks the woman at admissions if she can eat her sandwich because she hasn't eaten all day.  This just seemed so...stupid...and then she jams the whole thing in her mouth and attempts to answer questions as bits of half chewed sandwich cascade out of her mouth.  Ultimately she spits it into napkin.  Awful.  But I digress.

Emma, watching this for perhaps the hundredth time, said, "So stupid...how can they not see she's Hannah Montana?  Same voice, same face, just a wig!" 

And I heartily agreed, "I know, it's as bad as Superman!"

And Emma replied...

"Who's Superman?"

Leslie cackled out loud at the look on my face.  I say cackled because she was unable to contain mere laughter at the expression on my face.  It was...like...VIOLENT laughter.  Hurtful violent laughter.  For my part I just stared numbly at my daughter thinking about all the ways in which I've failed in her education.  (She has no interest in seeing Star Wars despite my protests that she will almost certainly not be accepted to Yale if she can't pick up Star Wars references...(oh...Yale because she asked at what school Des Durant from The Voice played football, and I replied Yale, and she said, "Yale Law School" and I said, "I don't know if it was the Law School, but Yale is a great school.")).

And so this morning I told her in my own words the origins of Superman (she knew who he was at least but I guess the sticking point was that she did NOT know who Clark Kent was...or that he even HAD a secret identity).  I told her there would be a quiz, and I'm almost certainly going to buy her a Superman comic book to read.  We covered Jor-El, Kal-El, The Kents, Louis Lane, Jimmy Olson, The Daily Planet, Kryptonite, red and yellow suns, etc.  Tonight we'll discuss Metropolis, Lana Lang, The Forbidden Zone, and as many of the major super villains as possible, even if we have to turn her book report in a few days late.

Then Spiderman...cause she didn't know Peter Parker's name, or WOULDn't have if my wife hadn't muttered "Peter" under her breath...neither could come up with the last name.

Some outtakes: 
"And he'd duck into a phone booth and take off his glasses and fly away."  .
"What's a phone booth?"  (okay, she didn't really say that, but it would have been funny as shit if she had, because let's face it...where's a phone booth these days?  She DID say, "Wouldn't people just have been able to see him through the glass?"  and I replied, "These were phone booths with privacy."

"And Peter Parker works at a photographer for the Daily Bugle."
"Do all superheroes work for the newspaper?"
"No."
"Sure seems like it."

"Then there's Aquaman," Leslie added.
"What was his secret identity?"
"He didn't have one."
"Why not"
"He was always underwater."

What the hell are they teaching kids these days?

Ridiculous.

Tuesday, December 11, 2012

Going to See the Fat Man

So...somehow a post I wrote last week about going to see Santa at an Autism Connection of PA event, posted without my knowledge.  Well, to be fair, it posted when it was supposed to post over at Childswork.com...it just sort of slipped from my mind.  So yesterday, slaving away for the man, I didn't even glance at it, or twitter, and it just sort of sat there and gathered dust and wondered forlornly whether it's daddy was going to visit it.

I feel so bad.  I'm sorry, post...daddy's going to visit you today, I swear.

Going to see Santa; going ANYWHERE really, requires some planning for us.  It's more than just hopping in a car and standing in line, and it is for most of the people that read this blog too.

Here's how WE do it:

"A Visit to St. Nicholas"

As a special preview of one of the tips...I'll give you a spoiler.  "Take lots of pictures".

















Wednesday, December 5, 2012

Finding the Right Gift!

Today I'm posting about giving over at Childswork.  More specifically, I'm posting about 1)  How to decide what to get a child with special needs (although I only really can speak for my kiddo.  I know others are different) and 2)  How sometimes gifts are more of a reflection of a giver than of the recipient.

Also, they've asked me to write weekly for them now instead of twice a month.  So that's fun.  And also they pay me for it.  So it's fun, and baby needs a new pair of shoes.  So ...you know...there's that.




"I did not make this mess."

Monday, December 3, 2012

In Roman Times...

We had finished our breakfast.  Lily busied herself in the family room with "Chipmunk" books while Emma sat backwards (of course) in the chair and faced me.

"Mommy should wrap this clock," she said.

Leslie had wrapped a few of our smaller wall-mounted pieces of "art" the previous night and they looked very festive and Christmasy.  When she finished we had mock-criticized her that she hadn't wrapped the enormous print over the couch.  Apparently Emma felt our Christmasiness could still use a boost.

"Why would she wrap the clock," I replied?

"Well, it doesn't work anyway."

"It does too!  It just runs a little slow when the battery wears down.  Look at the time on it!"

The clock read 7:24.  For the next thirty seconds or so I listened as Emma (straight A's this past quarter) struggled to get the correct time, giggling to herself at her inability to read a 'real' clock.  She kept a running dialogue going as she attempted to work it out.

"six...twenty...., wait, it's five, ten, fifteen..."

"Em," I said, "It's past six, it's actually after seven..."

"Oh!" She laughed, continuing to work...

"REALLY??" I asked, raising my eyebrows, "How can you not tell what time it is?"  I feel like telling time on a traditional clock must be one of those things that is slowly phasing out like VCR's and CD's and GPS's and courtesy.  The only time it's ever really relevant is when a...DVD/Cable box/microwave/cordless phone/cell phone/laptop/computer/iTouch/coffee maker/whatever...isn't available.  In our family room/kitchen alone we have the time echoed on no fewer than seven appliances/devices...none of which are 'analog' time.

She looked at me in mock scorn and replied with a frustrated gesture at the clock face, "Well, I can't help it!  I can't read old people numbers!"

Old people numbers. Or, as old people like to call them:  "Roman Numerals"