Still Aware and Still Accepting

Today is the last day of April, now the official month of Autism Awareness and Autism Acceptance.

But of course, for those of us either with, or in intimate relationships with someone on the autism spectrum? It's not a month. It's a life.

A good life. But different.

I am still, more than ever, swamped by my duties as producer of the Listen to Your Mother Show, which is happening THIS upcoming Sunday. So I barely have time to type even another sentence about anything else, let alone the meaningful post about autism I should be writing today.

So even though yesterday's post was stream of consciousness (to the max) and I usually try to follow that with something well thought out and structured. Not possible to happen today. It's just another brain-dump people, with apologies.

Jacob has spring fever or spring mania or something and is bouncy and happy but also bouncy and LOUD, with his all-the-time talking at a new high. It's probably time for a visit to the psycho-pharmacologist for adjustments, and that is time and money I don't have. (Putting that call on my already floor-length to-do list for tomorrow.)

Listen to Your Mother is going to be amazing and our rehearsal yesterday truly inspiring. But it has definitely taken a toll on my family, with Ethan once again declaring that "You love your computer more than your kids, your computer is more important than ME." Sigh. I hope some day he'll understand.

Yesterday I actually said to him "I am more than just your mother, you know." And I kinda, sorta meant it.

I have to assume some of Jacob's over-the-top-ness is his needing more from me than I have been giving lately. He wants to play, to talk, to show me everything he is doing, which is truly, truly wonderful, but the timing couldn't have been worse.

So I am juggling three full time jobs - LTYM, Special Needs Mom, Elder Caregiver - and well, it ain't pretty.

There is an important conversation going on right now, that you should be reading if you care about autism. It's over here:

It's an answer to someone finding their blog using the search words "I wish I didn't have Asperger's." They want everyone typing those words into a search engine to find THIS site - and hear words of positivity and encouragement.

How utterly awesome. I wish I could have participated, but Asperger's is not the flavor of autism I have any real intimacy with, Jacob being of a different stripe altogether. 

But it's wonderful stuff, a lot of great posts by a lot of my autism-mom friends written and linked up there. You should go and read!

And that's really all I have time for today. Almost not a post, but better than nothing. (At least I'm sending you somewhere full of the wonderful.)

Now I have to go do another hour or three worth of work on Listen to your mother, and then plan the kids' weekend.  Do some paperwork for my mother.

And sleep, oh, yeah that "sleep" stuff. I think I vaguely remember what that feels like.

SOC Sunday: reallyreallystreamofconsciousness

This one is really really stream of consciousness, folks, not those fake SOC posts that I;ve been thinking about for hours and planning in my head so only the actual monkey-typing part is real. Let's pretend it's really Sunday and not wee early in the morning Monday and I'm going to back-date this sucker, okay, just pretend with me. I am flat out flat out right now between producing Listen to Your Mother - show goes up on SUNDAY - yikes! - and then trying to actually BE a mother, and a care-taking daughter. and feeling like I'm failing miserably at BOTH right now - haven't seen my mother in a week too busy busy busy. Got a call from my aunt Marilyn's nursing home yesterday morning that she'd had another toe infection - nothing to be alarmed, just keeping me in the loop - and I'm all stabbed with guilt because I haven;t brought my Mom to see her sister in over a MONTH now but it always makes her so sad to see her sis so far gone, but then she feels guilty when she doesn't go, dilemma, dilemma.

Jake acting up a lot lately repeating "Timmy is a Stupid Kid" over & over (his own lovely take-off on the cartoon show Fairly Odd Parents theme song). I think he KNOWS it annoys me - because he's looking right at me and smiling his "I got you" smile while he does it - & is doing it because he's not getting enough positive attention from me as I am balls to the walls (yes metaphoric ones) with this LTYM show which is way more work than I had bargained for in the beginning but it feels so good to be working and being more than just mom but I know I am not being a quite good enough mom while I am so busy and mostly just DISTRACTED.

And thank GOD for wonderful neighbors who actually took Jake for 3 hours yesterday when my sitter had to leave early and my rehearsal was still going on and my husband was working at a convention and couldn't leave early because he was on a late panel. They're actually the most amazing people on the planet, kind and generous and smart and funny and fun to hang out with and I don;t know what I did to deserve them but whatever it is THANK GOODNESS. and then I feel guilty because I don;t know what i can ever do to repay them for all the slack they pick up for me other than occasionally picking their boys up at school.

ANd the LTYM rehearsal was today and so fabulous and the show the show is going to be WONDERFUL and I wish the theater were bigger because we are so sold out and so many of my procrastinator-y friends didn't think to buy tickets until it was too late even though I TOLD them it would sell out a month ago. le sigh.

And my poor neglected blog - I tried to do Momalom's 5 for 5 linky but only got to 3 for 5. even started the last post - "Listening"  - really wanted to write that one & had a lot to say there, but only got four sentences into it when had to put out another LTYM fire. lesson learned for next year - expect very little elsewhere in my life during pre-show month of April. But April April April is Autism Awareness/Acceptance month as I was supposed to be writing writing writing about autism all month long and I so didn't. I stared with a bang and then fizzled out and don;t let me get started on how that's a metaphor for so much in my life. And now I need to go try to get a little more sleep so BAM it's over, stream shut-down. goodnight.

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New to SOCS?  It’s five minutes of your time and a brain dump.  Want to try it?  Here are the rules…

• Set a timer and write for 5 minutes only.
• Write an intro to the post if you want but don’t edit the post. No proofreading or spell-checking. This is writing in the raw.

You can do it, too!  Click on the picture link and let's hear your 5 minutes of brilliance...

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.” 

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.” 

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.” 

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  C.J. Cherryh 

Science Fiction. I love it. And C.J. Cherryh is an amazing writer, one of my favorites. I can't even begin to describe this book, a strange one. But it makes you think and think and think; and that's what science fiction does, at its best. And I just found out that she's a blogger and calls her blog 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?

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.

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.

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 (@manyhatsmommyMI) and Elise (@RaisingASDKids), 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.

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

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

@jillsmo:  #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:

@diaryofamom:  #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.

SOC Sunday: Spelling Lessons

Thank goodness for SOC Sundays, because just when I was about to get things done yesterday, I had a wee stomach bug that sidelined me for the day.  And once again, between school vacation full-time momming and LTYM (which I adore, but is a bigger job than I had bargained for) taking over my life, my poor blog is suffering. But with SOC Sunday I can take a snippet out of my brain and call it a post. Wheeeee!

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Jacob is getting really crafty. He's always got something going on... some phrase or word or sound that he repeats over and over.  When he was little it was word-for-word scripting from his favorite TV shows. But he's become much more creative now.

His language is growing by leaps and bounds, and I'm not complaining about that in the least.  OK, I;m lying, I DO complain about it sometimes when he talks all the time. We are a family of talkers, and often there is precious little peace in the house.

There is a lot that is frustrating for Jacob in life, and he needs to vent his frustration like we all do.  And these days, his favorite word to do that with? Is "Stupid" - which happens to be one of my least favorite words in the English language (of course).

The first time he used it, I was thrilled with his being "age-appropriate" (I even wrote a post about it!) but now I'm getting really tired of it.

Because, of course, once he realized it annoys me? Its value has risen sky high. So it's not just being used to express his feelings ("Stupid Batman!" when he can't get the guy to fit in the Batmobile in a way that lets the top close) but instead, it's become his beloved catchphrase.

He inserts it into EVERYTHING... asking to watch "Sponge Bob Stupid Pants," asking for his "stupid" dinner and singing "Twinkle Twinkle Stupid Star" along with me at night.

And then, when I have had enough and start threatening loss of privileges - like his beloved TV - if he says it again? He is changes over to... spelling it out: S - T - U - P - I - D.  And I have to laugh, as he is being so clever.

I still don't like it, but as he is being so S-M-A-R-T about it, I let it slide when he spells it.

The other thing Jake's taken up lately is mewoing like Gary the pet snail in Sponge Bob. This isn't a frustration release, he just enjoys the sound, in a delightful stimmy sort of way. And I know that stimming calms autists and makes them happy, so I'm not trying to completely squash him when he makes the sounds that bring him such joy.

But I really don't want them being bellowed 3 inches from my face, either.  So I am asking him at times to stop meowing. And you know what he's doing, then?

Yup.

M - E - O - W.

Smart-ass kid.

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New to SOCS?  It’s five minutes of your time and a brain dump.  Want to try it?  Here are the rules…

• Set a timer and write for 5 minutes only.
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Looking Down the Road

Note: In Honor of Autism Awareness/Acceptance Month I am 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.

A few things in my life have been tapping me on the shoulder lately, asking me to please pay attention to the long view; looking down the road toward what my son Jacob may need in about a dozen years when he will ostensibly be an adult, or something like one.

We can’t know what life has in store for us, what twists and turns may lie ahead, with anything near certainty, but with each passing year that my son Jacob remains clearly on the autism spectrum, the prospect of him moving into "the mainstream" fades further and further from my radar.

And it hurts. It hurts my head and my heart to stand in the middle of the path Jake is currently on and calculate, clear-eyed, his trajectory, seeing it landing him square in the realm of needing some sort of minding or looking after... for the rest of his life.

Now, my son Jake is in a funny category. I don't love the labels, the ranking and quantifying. Because it leads to a certain reductivism, a tendency to see the traits, the diagnoses, and not the whole person - my wonderful son - who is so much more than the sum of his parts. But sometimes it helps when talking about these things to say: my son is considered "mid-high functioning."

"High-functioning" in the ways he has spoken language, reads, constantly attempts to communicate, actively engages with others and has a tremendous amount of social desire.

"Look, Mommy," he'll say, “I’m petting the kitty!” wanting to share his world with me.

But still, he is "mid-functioning" in how much of his language is still often scripted and repetitive, in how much of what he is hearing he is not comprehending; his language processing deficit rearing its ugly head time & time again.

And while he understands much about his immediate, concrete world, as soon as abstractions are introduced he is quickly lost. Language based as they all are.

Ask him a why question and you get a tautology:

"Why are you crying Jake?"

"Because I am sad."

"Why are you sad Jake?"

"Because I'm crying."

But the biggest concern of all is how little he understands of how the world works, and thus how undeveloped his ability to safely navigate in it.

Jake’s twin, at 9, doesn't always exhibit complete safety awareness when crossing a busy city street, but he's working on it. And he knows the elements involved, can rattle off what he should be doing -- waiting for the walk signal, looking both ways, watching out for turning cars, etc. etc.

Jake on the other hand, still seems to not know the difference between the sidewalk and the road, has no awareness as to there being a threshold crossed from one to the other. I must have pointed out the red stop hand and the white walking man of the crosswalk signs a hundred, a thousand, a hundred thousand times, and still he cannot for the life of him remember what they are supposed to communicate, why they should matter to him.

I could give a hundred other examples, but let's just say that while I expect Jake to grow and change, develop significantly, and blossom forth, unless there is a whole order of transformation about him - let's say future nanobots that can hook up the disconnected neural pathways or whatnot - we're looking at some sort of lifelong support system for him.

And this is where I quake in my boots.

Because the infrastructure to support that, for the MASS of kids who are going to need it, from the autism explosion that has manifested in Jake's generation?

Is simply. not. there.

I have a friend whose brother is autistic and in her charge, as her parents are both now gone. Her brother is living in a wonderful place, a small group home run by a dedicated staff. It is stable and intimate, and they function like a family. The residents venture out daily to jobs or day programs; there are outings: nature hikes, bicycle rides, movie nights, ice cream runs.

Wonderful.

But not wonderful.

Because my friend's brother had to wait 10 years on a waiting list to get in. And he's 42. Of the 5 in 10,000 generation.

There are a few handfuls of wonderful, appropriate settings for mid-functioning autistic adults; allowing them to live in supportive communities, nearly, but not fully independently. And, most importantly, where the residents have significant SAY in how things are run and their lives are ordered.

And now, it is our job as the parents of young autistic children to see that those grow a hundredfold, a thousand-fold, so they will be there for our kids who will likely need them.

And if you help to build a network of terrific group homes and your child ends up being one of the lucky ones, able to function fully independently in the world without support? You have done a wonderful thing for your community.

And if you don't act NOW? Your child may end up homeless on the street, in jail, or worse. Because while you think they can live with you forever... are you really going to live forever?

So yes, this started as a personal meditation on my son's future and ended with a call to arms.

Because in about ten year's time a whole generation of autistic adults is going to be aging out of their educational programs and therapeutic services. Many of them will be bright and personable enough to get jobs, but perhaps not be able to manage finances, or keep up with the many maintenance tasks of daily life without some degree of support.

And where will they go? Where will they go?

Feeling Very Hopeful, Indeed

It's the 10th of the month (shhh play along with me here) so I'm over at Hopeful Parents again today.

And while I thought, what with it being April and all, you know, Autism Awareness Month or Autism Acceptance Month (depending on which camp you fall into) and with my son Jacob on the spectrum, I would write another one of my “big thoughts” posts about A.U.T.I.S.M over there at Hopeful Parents.

Yeah. Not so much so. I have been too busy being his mother right now. Which is OK.

Spring Break and LTYM you know. Keeping me hopping.

So go on over to the New! Improved! Hopeful Parents site and read my post: My Turn

Cheerio! 

Missing my Father, Passover Edition

Batman & Joker at the Seder table, 2012

Food is the great memory-soup-pot stirrer. And so moments with my father often rise up to slap me in the face when I am in the midst of fixing food. (I would have said "cooking" but anyone who knows me would have done a spit-take, as I don't really cook these days, mostly assemble.)

Passover began on Friday at sunset, so our house was awash in matzo. Making Ethan his lunch, I asked if he would like some, or if he thought he’d be sick of it by the time these next 8 days were over, but he responded with an enthusiastic “Yes!” (Or as enthusiastic as a kid who is down for the count with a sore throat and bad cold can sound.)

And so I head to the kitchen to fix Ethan some (whole wheat) matzo the way he likes it… the way I liked it as a kid, schooled by my father because it was the way HE liked it: slathered with a thin, even sheen of butter and then salted.

He LOVED to eat matzo like that, and for years I did too. There is an art to it, making sure the butter is soft enough to spread, and spreading with a light enough touch so as not to pulverize the matzo as you spread. Then shaking on just enough salt. A delicate operation all around.

So standing in my kitchen, making my son his matzo I have invoked my father, tickled that such an un-religious man is so heavily associated with this very observant foodstuff.

He was a dedicated atheist/agnostic. He disliked organized religion. But we always did Passover and Hanukkah. I think because these were holidays in the home, about food and family.  And food and family were really important to him.

So every Passover of my childhood, we would head off to my Aunt & Uncle's (my mother's brother's family) where my wonderful cousins would be waiting for me.  We would go through the haggadah - a liberal, modern one, light on the "chosen people" & Hebrew and heavy on the social justice and unity of all peoples stuff - as quickly as possible. Then linger over the wonderful meal, finish up fast and roll home very late, very happy.

My husband's family is much more traditional and religious than mine, and in the years when my father was still alive and it was the year for us to Passover with Dan's side, my father would gamely sit through the long Seder, eat his matzo without butter, it being a Kosher meat meal.

As the years went on, his post-dinner sofa nap became longer and longer, eventually involving a pre-dinner one as well, encompassing most of the Seder itself. But still, it was good to have him with us.

He and my Mother-in-law passed in the same year, so my mother is the sole representative of their generation at Passover now. This year she appeared markedly more fragile than last, fading rapidly.

I feel her slipping away before my eyes, a pleasant smile always on her face, but less and less going on behind it with each passing day.  Caring for my father grounded her, kept her present, focused.  She is starting to forget people.  I do not know if she will still be with us next Passover.

This year my father is now two years gone; this our third Passover without him. But buttering and salting a square of matzo for my son, I feel him standing by my side, peering over my shoulder, reaching out for its crisp, crumbly goodness; reassuring me I've salted it perfectly, just right.
 

March Round-Up: What I Loved on OTHER People's Blogs

"Cloudy Afternoon" by Neil Kramer

Welcome to the March edition of "What I Loved on OTHER People's Blogs."

Yes, I know its April 5th, so I'm a little late... are you surprised? Really? You must be new around here. Anyway, to recap: it's a regular monthly round-up of what has caught my eye (and brain, and heart) on the internet.

And this month I'm going heavy on the newest feature, favorite instagram photos from other blogging photographer's instagram feeds. And this month these are, as I predicted last month, all by my friend Neil Kramer, the AMAZING intstagram photographer who also blogs at Citizen of the Month. And if you love his photos as I do, you can follow his feed though his twitter handle @Neilochka.

So without further ado, a double handful of wonderful posts and a mess o' instagram photos from March, 2012, presented for your edification and enjoyment...

Not even a little bit from Kris of Pretty All True

So, I'm Going To Be Okay  from (The Empress) Alexandra of Good Day Regular People 

"Cash Register" by Neil Kramer

Your Baby is My Baby from Jean / Stimey of Stimeyland

We're afraid to die from Amanda of Last Mom on Earth

"Pacific" by Neil Kramer

The best of school, the worst of school from Alice of Finslippy

 Little soldiers from Heather of The Extraordinary Ordinary

"Pier, Manhattan Beach" Neil Kramer

Not Quite Closure from Dragon Slayer Mama of tenaciouscee

A Uterus Is Not a Machine, My Daughter Is Not a Farm Animal, and I Am Not Happy from Adrienne of No Points For Style

"Bicycles" by Neil Kramer

Dick Cheney's First Heart from Deb of Deb on the Rocks

How Do You? from Stacy of Filling in the Blanks

"Surfer" by Neil Kramer

And, as always this is an idiosyncratic, and very incomplete list. There is always more wonderful out there, but these are the particular ones I have chosen this month. You're welcome.

Wordless Wednesday: One Face of Autism

I'm in the middle of writing and writing away, but in the meantime, a little visual interlude. Pictures of my son Jacob from this past year, in his many moods and phases: happy, sad, connected, spacey, silly, sweet.

Usually happy, but sometimes not; somewhat mercurial, consistently delightful, but always Jake.

 

I love you, Jake, my son with Autism.