This is Jacob. This is autism.

I know I have fallen silent here again. This time it's because I have been overwhelmed by the fallout from the events of the past week. Newtown.

There has been a misguided media feeding frenzy focused on a possible autism diagnosis of the shooter, and erroneous speculation that autism was behind Adam Lanza's heinous acts.

There is much destructive misinformation spreading around the world.

Ignorant, spiteful people have created hate sites about how autism = violence, and proclaiming that autistic people are monsters who should all be rounded up and jailed or exterminated.

I can't...

I just can't...

I can't even breathe when I think about this.

I have not been able to write about it yet, finding myself just too devastated, frightened and overwhelmed to form a cohesive sentence. (Hence the radio silence.)

But many many friends of mine have been writing, voices of love and light to meet and answer the tide of fear hate.

For starters, read these, here:

A letter to Elisabeth J.A. by Jillsmo

My Son Has Autism. Please Don’t Be Afraid. by Jo Ashline

When Children Die, It’s Time to Grieve and to Reflect, Not to Scapegoat by Rachel Cohen-Rottenberg

And also a movement sprang up, a photo meme: "This is Autism" - to put a face to autism as we know it, with words describing some of the wonderful, quirky, delightful people who are on the autism spectrum. Parents are sharing their children, adult advocates are introducing themselves.

And that I could do; thus this picture, with these words.

And we're all sharing it here, on the Autism Shines facebook page.

Come, see the beautiful shining faces of so many of us and our children. Share your own images. Meet some people with autism who are not violent scary monsters, but our wonderful children and our wonderful selves.

OK, I realize if you're a reader of my blog, I'm probably preaching to the converted, but please share this page widely and maybe it will reach someone who needs to hear it.

Peace to you all. More words here soon.

Good News (AKA things that don't suck)

A lovely day for a party in Connecticut

It's been up and down all week, all month, all year, and well, let's just say for some time now we've been riding life's rollercoaster, or if you prefer your metaphors nautical: cast adrift on life's choppy seas, pitching and yawing along.

Today, this very moment, I am feeling well weary of the negative, of feeling I am one popped stitch away from coming apart completely at the seams. So I will, here in my own little bloggy fiefdom, do as the old song says and ac-cen-tu-ate the po-si-tive.

So, hereforth and forthwith are five things from the past week that DIDN'T suck, that might even qualify as good news...

1. Getting Mom out of the hospital and into a nice suburban rehabilitation center was totally the right move. We brought her out to Long Island on Thursday. She ate a hearty amount of lunch, was in good spirits, worked on one of her word puzzle books for the first time in a month.

And when the cute male admissions nurse left the room after saying he needed to come back and do a full body check on her? Her response to me: "He's cute. He can do a body check on me anytime." You go, Mom!

And the reason why we picked this particular rehab center? I have been very (what's the diplomatic word here?)... disenchanted with the rehab options in NYC. And then, it turns out that my Aunt Eva, my mother's sister-in-law is currently also a short-term rehab resident at this facility, which is a mere mile from her home. Which means my Uncle Walter, my Mother's brother, visits daily.

And now that my Mom is ensconced two doors down from my Aunt, my Uncle gets to hang out with BOTH his wife and sister at the same time. Also my doctor cousin Jessie (Walt & Eva's daughter) has declared this facility "definitely nicer than most of these type places." Win-win.

2. Jake had his annual physical on Friday and an appointment with the doctor we see for bio-medical issues on Monday. We're taking his two week hiatus between the end of the school year and the beginning of camp-school (what we call his six week school summer program to make it sound more like what Ethan is doing) to get in all our doctor visits.

Both doctors thought he was doing quite well, were pleased with his relative calm and very impressed by his art work (I showed them samples).

And then when he had to have blood drawn he was pretty good about it. A little anxious beforehand and during, but no screaming. And then he was a little fascinated by the process and talking about it a lot afterward  - "What color was my blood, Mommy?" and "What did the doctor do to my blood, Mommy?"

3. On Friday, during his daily recess basketball game, Ethan made a 3-point shot to win for his team. And the week before, at his afterschool basketball program awards dinner he had been given a special medal for "Best Defensive Player of the Year."

As basketball is his great passion these days, both of these things made him inordinately happy.

4. Jacob is clearly missing school. Three days into his vacation he decided to have Blue Bear and all his other stuffed animals get on the bus and go to school. Once they arrived, he recited the daily schedule to them and then he led them in a bit of "guided reading." They ate lunch and played ball and then went back home to their mommies and daddies. But he told me they would be going back to school the next day! (And they did.)

Part of preparing Blue Bear to "get ready for school" was to get her dressed in some doll clothes I had bought for her last year, when Jake had insisted she get dressed when he did. So the second day of this game, after getting BB on the bus (Jake's pillow), the monkey bus driver drove on to the next pick-up point.

But once there, Jake declared of the penguin and cheetah who were waiting for the bus: "They can't go to school, they're NAKED!" Yes! Social rule understood: No naked school days!

5. We were finally invited to an annual birthday pool party I have been hearing about for years, the social event of the 4th grade boys world at Ethan's school. And today was the absolute perfect day for a drive to Connecticut and a pool barbecue bounce castle trampoline party. (And it was easy to bring Jake along to this, as the hosting family has a SN kid of their own as well, and is particularly lovely and understanding.)

We returned slightly sun kissed, tired and happy. Perfect.

<*>*<*>

I am not going to mention my worries about Mom's blood pressure being consistently low.

I am not going to talk about how despite it being cute, my mother's level of disinhibition is troubling, indicative of more cognitive changes afoot.

I am not going to share my disheartening realization late last night that last year's bathing suit was not going to fit, necessitating a last minute, early morning run to the full-priced neighborhood swim and lingerie shop where I got to beg them to help me find a suit that hid the fact that I do not have a bathing-suit-worthy body.

I am not going to fret over Ethan's being positive he is going to win a basketball scholarship to Harvard, and therefore doesn't have to put too much effort into his actual schoolwork.

I am not going to bring up my thousand fears and anxieties about Jacob and his future.

Ac-cen-tu-ate the po-si-tive.

Back to kvetching and bemoaning tomorrow.

Words

Words count.

They do.

I have always loved words. Been a reader. A person with a big vocabulary. Occasionally accused of snobbery for my use of ten-dollar words, for my correction of others' misuse of them.

It has never been clearer how important words are, as the mother of one son who, like me, delights in words, and yet another who struggles mightily with them.

Word have power.

To name.

To define. Or not.

I was never afraid of the word: Autism.

It did not crush me - as I am aware it has others - when first I heard it used to name my son, these many years ago (October 6th, 2004, but who's counting?)

But other words? They do bear the power to harm. To diminish. To "other" a person.

The "R-word" is one of THOSE words: Retard.

Call my son that? Make a joke about it? And I will hurt you.

My friend Ellen has written many a time, and most eloquently, about the harm that word does, and is deeply involved in the campaign to end it. (Read her on this: Would you call my child a retard?)

Right now there is a video making the rounds in the special needs parent blogging community, and beyond, thanks to Joslyn (the Stark Raving Mad Mommy) at Babble. Watch it in her post there: “It’s About Dignity”

Or here, on my friend Jill's blog Yeah. Good Times.

In it the father of a less communicative son on the autism spectrum (I refuse to use the term "low functioning" - believe it leads to viewing people - wrongly - as lesser, and to discounting their intelligence) comes public with the story of his son's suffering humiliation, bullying, cruelty and betrayal at the hands of his teachers and aides.

Yes. His teachers. Not other students. His teachers.

And it was hidden. A secret. His son's sudden deterioration a mystery until the father wired him for sound one day after six months of getting nowhere, going through the proper channels at the school.

The teachers and aides berate him. Tell him to "Shut up!" Make him cry by cruelly telling him "No, that's not going to happen." when he asks, anxiously, if he is going to see his father later. Then call him a "Bastard" for crying.

And it goes on. Gets worse. Their complete disregard for the humanity of the children in their charge apparent in everything they say and do.

(And they didn't all get fired. All but one? Just reassigned within the district. Still "teaching.")

They did not hit this boy, did not abuse him with their hands. But they systematically destroyed him. With words.

Because they could.

Because they knew he could. not. tell. anyone.

He didn't have enough words to do so.

I rejoice in my autistic son's growing facility with words. All the new ways he tells me what he is thinking and feeling. The jokes he makes, even when they involve substituting "stupid" for every other descriptive word in a song.

But still, I know there are whole realms of things he cannot tell me; thoughts and ideas still locked in his head, the language key not yet found that would release them.

And I worry, I worry every day that bad things could happen to him; bad people cross his path, do him harm. And I would never know.

Yes.

Words have power.

This I know.

this

i

know

I am linking this up with Just Write, even though it is not a typical JW small-moment-free-writing piece, because Heather's link-up with Momalom's 5 for 5 link-up inspired this piece. (And I did kind of just let it free-associatively flow.) 



The Momalom prompt for today, Tuesday, was “Words.” 

A is for Autism

A is for Autism.

For April is Autism Awareness Month.

A is also for awesome, like my son Jacob, a nearly nine year-old boy, with autism.

Jake is also astonishing, admirable and amazing. And that's just the "A"s.

He is, in fact, a whole alphabet soup of cool...

beautiful, charming, dynamic, engaging, fabulous, giggly, huggable, impressive, joyful, kissable, loving, marvelous, notable, outstanding, peachy, quick, remarkable, smart, terrific, unique, vivacious, wondrous, exuberant, yummy, and zestful.

And then he is also, at times...  

anxious, bouncy, confused, disconsolate, exhausting, fearful, growling, hellacious, impulsive, jarring, klutzy, loud, maniacal, nervous, overwhelming, puzzling, quixotic, relentless, self-directed, tangled, unhappy, vociferous, wretched, excessive, yawing, and zoned-out.

This is his autism. Our autism. Autism as we know it.

Different for everyone, this is Jacob's particular flavor.

Some days it's the sauce on the side and some days it's the whole meal.  Some days tangy, others bitter.

But it is always a part of who Jake is.

I always see the beauty and value of my son.

Some days I can see how his autism is a part of that beauty, giving him his unique vision; what some have called the gifts of autism.

Other days he is so unhappy, actively in distress, and all I can see is how it causes him pain, confusion, unwanted isolation.

And then I am mad at autism, which is fruitless, like being mad at the wind. But still, I am.

I am aware of autism every day.

It is our life.

And now, so are you, maybe, a little bit more.

This post has been inspired by and linked up to Jenny Matlock's Alphabe-Thursday writing meme. And choosing an "A" word, for me? Now, THAT was a no-brainer if ever there was one.

I'm also linking this post up to Shell's Pour Your Heart Out linky at Things I Can't Say


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N is for Neurotypical

N is for Neurotypical.

(Our word for what a lot of the world calls "normal")

Something highly over-rated.

Something that we are not.

The squashed family is mostly Neurodiverse.

Jake has Autism.

(OK, technically he carries a PDD-NOS diagnosis, sometimes called "autism light" as opposed to full-blown-hits-all-the-points-in-the-DSM autism.  He is clearly on the Autism Spectrum, has an Autism Spectrum Disorder; there are just so many different ways to say this and they all boil down to the same thing.  I am not one for mincing words or finely parsing exactly where on the spectrum his particular snowflake variation falls. I keep it simple, say he has Autism, leave it at that. Autism is not a word I am afraid of.) 

Ethan has some ADD. Also?  Probably a higher than average propensity towards anxiety.

Me?  ADD, baby.  I'm all ADD-rific.  Also?  I'm more than a wee bit neurotic.  (But you knew that, already, no?)

My husband, the boys' father?  I don't talk about him that much here.  He is my polar opposite, as much a private man as I am a compulsive over-sharer.  And I try to respect that.  His stories are his to tell.  Or not. 

And did I ever mention that my mother has ADD, too, finally diagnosed when she was in her 70s?

Apples don't fall far from trees, do they?  No indeed.

Neurotypical? 

Not in my basket.

We think differently.  Sometimes making lightning leaps to land in an instant where others' plodding steps might take them months to get to.

Other times we find truly intolerable a circumstance you find merely mildly annoying.  Or pleasurable.

Our brains are different.

To quote Temple Grandin's mother for the thousandth time: Different, not less.

I'm thinking of printing up a t-shirt, our slogan:
"Say it loud: Neurodiverse and Proud"

It should have rainbows and snowflakes on it, but also be manly enough for boys to wear.

Could you, would you wear one, too? 

Join us here in the neurodiverse zoo?

(And no, I have no idea why I just channeled Dr. Seuss there.  But I find that so amusing, I'm going to stop myself from editing it out & let it stand, in all its goofy glory.)

This post has been inspired by and linked up to Jenny Matlock's Alphabe-Thursday writing meme. We're obviously up to the letter "N" this week.


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