Thursday, April 26, 2012

Age

Age.

Yes.

As in: I am a woman of a certain...

As in: I am an older parent of older parents. A member of a stretched out sandwich generation. A hoagie, a grinder, a foot-long, as it were.  With boys still in the single-digits (for a few months longer anyway) and a mother fast approaching her 90th birthday (while fading away before my eyes), I think about age a lot.

I ask myself "What was I thinking?" having my kids at 42, when the alarm rings on a school morning at 5:45 and my Peri-menopausal insomnia has kept me up well past two.

But as my sleepy guy gives me a hug after his initial growl, intones "Good morning, Mommy" in his sing-song voice, I remember: this.

I was thinking of this, and what I would miss if I didn't jump at my last good chance. 

I don't do the math anymore.

I used to calculate: When the boys are Bar Mitsvahed at 13? I'll be 55, and my mom will be 93...

High School graduation? Boys 18, me 60, Mom 98.

College graduation: 22, 64, 102.

Their weddings? Well, that's anyone's guess. But, most certainly? Me: OLD. (And Mom? Beyond unlikely.)

You see how it became problematic in so many ways.

Jacob's trajectory is anything but straightforward. The Bar Mitzvah can probably be accomplished at 13. With tutoring and accommodations. But those others? Not even really on my radar, autism the biggest monkey wrench imaginable to be thrown into future plans.

Jake is on his own timetable, biological and mental/emotional ages matching up at some points and diverging wildly at others. He is his own constellation, and the itinerary of that firmament is still so unknown and unknowable. Jake will do things on Jake's time. Enough.

Even Ethan, without autism's schedule-skewering influences may stray from the straightforward march of life. Who knows?

And then there's my mother's age, already stretching towards the horizon.

"Why not 100?" I had asked her, just a short year ago. But I can see how unlikely that is to happen now, how much this year has taken away, diminished her.

And also unspoken here, when I began these calculations, in my sons' infancy?  My father was still living and part of the equation. He made it to their pre-school graduations. To their 7th birthday party. Not beyond.

He would have been 98 at their Bar Mitzvah. Not impossible, as initially calculated. But not to be.

And me? I am charting my own waters here. Nearly 52. A mother, easily old enough to be her children's grandmother. But not.

Looking younger (a mixed blessing, an oft-used excuse for my immaturities). Some days feeling like a kitten; others as old as those proverbial hills. (Especially on ones when my boys want me to play basketball.)

In the last year of his life, when my father could still speak, before the final downward spiral when words sifted out their meanings from him, he shared with me this wondrous thing:

At 92, looking in the morning mirror, he would still find himself, some days, astonished to see an old man looking back at him. Because inside, he said (pointing to his head, his heart) is a young man of 22.

Forever and always.

Age.

Yes.



I am participating in Momalom's 5 for 5 link-up and the prompt for today, Thursday, was “Age.” 

Wednesday, April 25, 2012

Pictures

I grew up immersed in the world of pictures. My father was a photographer, artist, sculptor.

Jim Steinhardt, Woman in Greenwich Village Cafe, 1948
I grew up in - and then a nearby suburban stone's throw from - New York City, the art center of America. Trips to the great museums a weekly, then monthly, occurrence.

At six, I would tell you how much I loved the sculpture garden in the Museum of Modern Art, the Ellsworth Kelly being my favorite. I would insist we visit my beloved Sleeping Gypsy every time we went, too.

Henri Rousseau, 1897

Our home, needless to say, was full of pictures. This guy? (well, a reproduction print):

Paul Klee, 1922
He greeted me every morning. (Klee being my mother's favorite artist.) I called him "Orange Man" and was quite fond of him. (Does it spook me a bit that the official title of this piece is "Head of Man Going Senile"? Yes, yes it does.)

My father's photos and sculptures filled our house.  (Books, too, but we're talking about pictures today.)

Jim Steinhardt, Pearl Seller, 1947
It is no surprise I became a photographer myself in high school, went on to make my living in the image and picture-full business of film / television / video.

And then I married a man who, though a writer and editor in it, is from the world of comic books, the place where the melding of picture to word became its own art form, and gave birth to the beautiful thing that is the graphic novel.

And we had a son who, though he struggles with words, speaks most eloquently through his pictures.

Jake, December 2011, "Mom"

Although no longer working in the world of pictures that is film and television, thanks to modern technology I am never without my camera; iPhone and instagram being my tools of visual creativity these days.

Hydrangeas on 6th Avenue, April 2012

Even though I have now chosen words as my medium and am immersed in a world of reading and writing, I will never discount the power of pictures in my life.



I am participating in Momalom's 5 for 5 link-up and the prompt for today, Wednesday, was “Pictures.” 

Tuesday, April 24, 2012

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


Just Write
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.” 

Monday, April 23, 2012

Monday Listicles: Books! Books! Books!


I haven't participated in Stasha’s Monday Listicles in a loooong loooong time. But this week's topic is near and dear to my heart, so I had to jump in. This week, Stasha herself asked us to write a list about... books.  

That's it: Books! Anything about books.  So... Easy - I love books!

Also? Not so easy - I love books - so I can think of 10,000 things to say about them, how can I narrow that down to ten.

And is this a list of MY favorite books? My kids' favorite books? Books I've really enjoyed, even if they're trashy? Or books I think are IMPORTANT?  Or... or... (Yes, I AM capable of over-complicating anything, thank you.)

In the end? I decided to go with, simply: 10 books that I love. (Even though it is guaranteed that as soon as I hit the publish button on this post I will hit myself upside the head with a "Oy! How could I have left THAT book off the list!) So without further ado:

Varda's List of Ten Books That I Love (or are important to me in some way) in no particular order:

1.  Just Above My Head, by James Baldwin

This last novel of his is, in my opinion, vastly underrated, and one of my favorite novels. It's gloriously shaggy. And it has one of my favorite 1st lines: "The damn'd blood burst..."



 2.  No Place On Earth by Christa Wolf

One that I can guarantee 99.9% of you have never heard of. The first line: "The wicked spoor left in time’s wake as it flees us."

3.  An American Childhood by Annie Dillard

I love Annie Dillard. She is one of my very favorite writers on the planet. I once found hardcover copies of this book on cheap remainder somewhere and bought 5 so I could give them away to friends.



4.  A Wizard of Earthsea by Ursula K. Le Guin.
These were favorite books of mine as a child (then a trilogy, now a longer series) and still are wondrous tales. Ursula Le Guin is an amazing writer.


5.  White Noise by Don Delillo

No description really necessary. Much lauded. A wonderful novel. Unfortunately the first Delillo I ever read, and nothing else ever measured up.


6.  Wave Without a Shore by 

Wave Without A Shore, so this must be one of her favorites too.

And now, some important books written by writers who are all on the autism spectrum. How important these are to me is hard to explain, except to say I read them all when Jacob was young and much less expressive of his thoughts and feelings than he is now, when once I feared I would never catch even a glimpse into his inner life.

Now, he is nowhere near as articulate as these folks - all adults with aspergers and thus not with Jake's specific language processing issues - but still, every day I am moving closer and closer to him. It is wonderful, and deeply appreciated.

But when I read these books, Jake was still so much a cypher to me. Hearing these authors talk about their experiences as autistic children in the confusing and cacophonous world has been invaluable to my early burgeoning understandings of my son: 

7.  Songs of the Gorilla Nation by Dawn Prince-Hughes

This is a beautiful and important book about autism, written by an autist who became a primatologist and began to understand people though gorillas. Incredible writing.

8.  Look Me in the Eye: My Life with Asperger's by John Elder Robison

Wonderful and richly detailed memoir of John Elder Robison's life both before and after his diagnosis of Asperger's. And much of his life takes places in Amherst, my old college town!

9.  Born on a Blue Day by Daniel Tammet

Another wonderful memoir by an autistic author. Daniel is a math savant with major synesthesia who has memorized Pi to an amazing length.

  

10. Thinking in Pictures by Temple Grandin

The mother of all autism memoirs. Temple is probably the most well known autists on the planet, and she is an amazing woman.  I met her once, and remember her asking the person standing next to me if he preferred her to look at or listen to him because she was having trouble doing both.


OK, I'm done - let's call it a night!  What are some of YOUR favorite books?

Saturday, April 21, 2012

Autism’s Little Gifts

Note: In Honor of Autism Awareness/Acceptance Month I have been bringing some of my posts from the group Hopeful Parents site (where I post monthly on the 10th) back home to my blog. This post originally appeared there, in November 2011, and I am very happy to report that I am in a much better space with Jake now. Although elbow still a big problem = tendonosis!

Jacob, April 2012
For some time now, I have been in a fairly negative space about my son Jacob’s autism. I am feeling worn down by the unending nature of it all, the intensity of my nine year old son’s needs, especially in comparison with his typical(-ish) becoming vastly more independent twin brother.

But as this community is called “Hopeful Parents” and not “Cranky Whiny Parents” I don’t want to bring that negativity here.

So I thought I would take a moment to share 3 positive things that my son Jacob’s autism brings to the table. These may be small, even trivial things (and some seeming contradictory, the positive side of a presumed negative trait) but small gifts are still gifts, nonetheless.

And I would rather focus on being grateful than serve you another round of complaints today; tip the scales up instead of down.

So here is a short list of some of the gifts Jacob’s particular flavor of autism has bestowed upon him and us, his family:

1. Jake’s obliviousness has some decidedly useful aspects. Last night I banged my elbow, HARD, holding open the bus door as Jake disembarked (I have definitely done some damage as it still hurts badly today).

As I stepped off the bus and literally jumped up and down and then leaned on the bus stop wall as my knees buckles with the pain, I DEFINITELY let loose a stream of words Jacob should not have been hearing.

If it were Ethan with me last night? He would have been cackling with delight. I would now be hearing no end of his having caught Mom cursing, and furthermore he would likely be telling everyone all about it, outing me to the other moms in the schoolyard this morning. 

But Jacob? He didn’t notice the salty language one bit, offered me nothing but sympathy: “Mommy, do you have an owie? Are you OK? You need a band-aid, Mommy!” and patted my back, kindly. (And anyone who says autistic kids have no empathy can suck it.)

2. Jacob loves the movies so much he will see ANYTHING. Ethan, on the other hand, has a very short list of what he will watch and it has to fit into his idea of “male” and “Big Kid / Teenage-ish” and that is that.

But Jacob? While there are some (heavily advertised) kid movies he begs to see - and we do - he is perfectly happy to sit through pretty much anything in a movie theater, as long as there is popcorn and he can stay through the very last end credit. 

This means if I have dropped Ethan off on a playdate and there’s a vaguely-appropriate-for-kids movie I want to see (rated PG13 or below), I can bring Jake with me and we will both be very happy.

3. Jacob doesn’t judge people. He has no notion of race, of class, of “cool” and “uncool.” He notices that people are different from each other, but it is interesting to him the way the difference between two flowers would be interesting: the facts, no values attached.

The other day he asked a boy with a port wine stain birthmark what was on his face, and thank goodness that boy understood that there was no meanness in the question for Jake, just curiosity. So the boy answered in a very straightforward manner that it was a birthmark and had been there since he was born, just a part of him.

And that was it for Jake. Question answered. Let's play.

And that’s it for me tonight. Three little things I am grateful for. I’m sure there’s more. But I have to go ice my elbow now.

Wednesday, April 18, 2012

Not Really Wordless Wednesday: Mugging

No, not THAT kind of mugging (thank goodness)... This kind:


Last Sunday was one of those unseasonably warm days. It was the very end of Spring Break. Ethan had a birthday party to attend on the East side, very near my Mother's place, so we went to see her for a short visit afterward.


After dropping her off in the dining room, then stepping out into the late afternoon sunshine, I had a brainstorm: Ethan and I should go out to dinner; just Mother and Son, enjoying a rare balmy April evening.


I called Dan who was home with Jake and told them they were on their own for dinner, and he was OK with that.


He knew Ethan had been complaining that "Jake got all this time alone with you Mom while I was in basketball camp, and I didn't get any." So we needed this time together.


The Barking Dog Diner, one of my favorite casual local joints, was just two blocks away, and had a slew of outdoor tables.


After we put in our order (I had my usual grilled salmon sandwich on 7-grain bread - the one I had craved constantly during my pregnancy) we had time to kill together sitting around the table.


Ethan was itching to get his hands on my iPhone and play games, but I didn't want to lose him to the screens. I suggested we take advantage of the sunshine and his cuteness and take some photos. Hence the mugging.


Ethan LOVES to pose dramatically, though he often cracks himself up doing it. He has a hard time keeping the "brooding" face on. Goofy is much easier for him.


Altogether? A perfect evening.

Tuesday, April 17, 2012

Building Community One Tweet at a Time

Note: In Honor of Autism Awareness/Acceptance Month I have been bringing some of my posts from the group Hopeful Parents site (where I post monthly on the 10th) back home to my blog. This post originally appeared there, in December 2011, and I am happy to report that the hashtag community phenomenon is still going strong.

If you’re on Twitter, and maybe even if you’re not (say, if you read Stimey's wonderful article) you may have heard of a hashtag topic marker that has been making the rounds for the past few weeks, even spending some time trending (on days when celebrity gossip yields few juicy items I presume).

It is this one: #YouMightBeAnAutismParentIf…  and it has been garnering some amazing responses.

It started as a private joke between two autism-mom bloggers who are also twitter friends: Jenny () and Elise (@), a take off on Jeff Foxworthy's "You might be a redneck if..." humor.

And then, as brilliant ideas often do, it spread like wildfire. People in the autism community noticed, chimed in (what Twitter was made for) because if there’s one thing we autism parents need on a daily basis, it’s a good laugh.

And while some of the tweets were funny in a side splitting way, others were funny with a wince; some were heart touching, yet others a call for help and support.

Here is a small sampling below:

@Stimey: #youmightbeanautismparentif you consider your kid's epic spinning session in a fast food restaurant to be an exercise in autism awareness.

@diaryofamom: #YouMightBeAnAutismParentIf you've discovered that 'family' need not be defined by blood.

: #YouMightBeAnAutismParentIf you are filling out forms and your 7 year old points out the mistakes you're making. And she's right!

: #YouMightBeAnAutismParentIf you carry fidgets, gum & pec cards instead of lipstick and nail files in your purse.

:  #YouMightBeAnAutismParentIf trying to get any information out of your child is practically your full time job.

@myautisticson: #youmightbeanautismparentif you have learned to love your child for who they are, rather than who they should be. Best lesson ever!

I caught wind of all this about a week after it had started, when I saw a #youmightbeanautismparentif tweet from a friend and thought YES! And looked in to see what this hashtag was all about.

I added this to the conversation:
@squashedmom: #youmightbeanautismparentif you think that neurotypicality is HIGHLY overrated.

What I found was a community gathering itself again, in a marvelous way. Some people were even joining Twitter just to be a part of the conversation. Jess from a diary of a mom tweeted:

  #YouMightBeAnAutismParentIf you barely glance at Twitter outside this hash tag cause a) you're out of time and b) all the cool kids are here. 

It made me think about how important community and support are when you’re a special needs parent. I am well aware that we are the lucky ones, we who became parents in this age of awareness and internet connectivity; how even if you live in an isolated rural area, you can now easily find others who really “get it,” who can answer questions, laugh and cry with you.

I think about how hard it was to be a special needs parent in the age when we were told our kids were hopeless, to just shut them away and forget about them, or even worse, that it was OUR fault they were that way.

I can only imagine how hard it must have been when it was considered a shameful secret to have children that weren’t "perfect," and to support and believe in your special needs child was a radical act; and you were unlikely to know anyone at all in the same boat.

I am grateful to those brave pioneers who have come before me, and so thankful to be in the midst of the many amazing, supportive communities I have found both in my city and in the world via the internet.

So every day I check out what’s new in the twitter stream gathered at #YouMightBeAnAutismParentIf, grateful that every day brings me new friends who have found yet another place to share the joys and pains of special needs parenthood.

Come join the conversation on Twitter. You can find me at @Squashedmom. Usually adding my two cents daily, even if it’s just...

@squashedmom: #YouMightBeAnAutismParentIf you are just too damn tired to think of anything witty tonight, but still need to connect to this community.