Autism Shines On

Only a few days old, the Autism Shines Facebook page (with a website soon to come) has now touched thousands of lives. I am happy and proud to have been a part of this from the beginning.

Because my boy? He so shines. With love and joy and happiness. With the light of a thousand suns.

Is he decidedly different? You betcha. So what?

I adore every atom of his being. He owns my heart.

Come see my son amidst his people.

Come see all these beautiful autistic folks with their spirits shining through.

Share your own photos.

And let me leave you with one more image, something to remind us how silly it is to make assumptions about people merely because of a diagnosis on the autism spectrum...

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

"The Storm is Coming" by Neil Kramer

First off, before I get to the official stuff? Happy Star Wars Day! May the 4th be with you! (OK, now that I've let my SciFi geek freak flag fly a bit, back to the business at hand...)

Welcome to the April edition of "What I Loved on OTHER People's Blogs," my regular monthly round-up of what has caught my eye (and brain, and heart) on the internet.

As you certainly know, April was Autism Awareness / Acceptance month, and so there have been so many, many wonderful posts about autism to splash across the cybersphere this past month, I don't even know where to begin.

If I listed and linked up all the amazing things I've read, this post would be a mile long. So I will instead be offering a small sampling of all the fabulous that is out there; idiosyncratic and very incomplete, as always.

And then, at the end? Something completely unrelated to autism and hilariously funny, from one of my LTYM cohorts. Spit-take funny. Seriously, do not read with a mouthful of beverage or you will be wiping it off the screen.

And, as usual, a couple of my favorite photos from my friend and favorite intstagram photographer, Neil Kramer, who also blogs at Citizen of the Month.

So without further ado, a dozen or so special posts by autists and parents of folks on the spectrum from April, 2012, curated here for you...

Murder, Fear and Hope from Ariane of Emma's Hope Book

Next Steps For An Adult Child With Autism from Liane at The Huffington Post

The naked mechanisms of echolalia from Amanda of Ballastexistenz

The Respite Requirement from Hartley of Hartley’s Life With 3 Boys at The Oxygen Mask Project

thoughtful, not scrubbed from Jess of a diary of a mom

 (photo interlude, courtesy of Neil) 

“In back of truck” by Neil Kramer

Mama Be Good: To "I Wish I Didn’t Have Aspergers": #AutismPositivity2012 from Brenda of Mama Be Good

Light Up The World from Alysia of Try Defying Gravity

This is What You Get from Rachel of Journeys with Autism

Outrage for Akian: It's about dignity from Jillsmo of Yeah. Good Times.

I have to believe from Mir of Woulda Coulda Shoulda

And now enjoy the one that is so NOT about autism:

Secrets of the Traveling Va-Jay-Jay from Kate of Diary of a Return-to-Work Mom

“Tree in Cemetery” by Neil Kramer

My work here is done. See you next month!

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.

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! 

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.

My 1 in 88

Jacob, March 2012

Today is World Autism Awareness Day and April is Autism Awareness Month. A big deal in the autism parenting community.

I am, as is usual these days, a busier than busy bee, slammed to the wall with things that MUST BE DONE. And a long school vacation is looming later this week.

But I could not let today pass silently, without notice on my blog. It's just too important.

Last year I wrote a pretty cool post about my son, Jacob: Every day is Autism Awareness Day 'round these parts and everything I said in there still stands.

Jake is now one year older, evolved and evolving; his conversational skills and artistic talents just bursting forth, more and more amazingly every day.

And he is still, and will likely always be, on the autism spectrum. A unique boy with a unique brain; a singular perspective on the world, which, thankfully, usually delights him.

I love Jacob with every fiber of my being.

But I hate that he struggles so mightily with language, with expressing himself, and sometimes with just simply understanding what people are saying to him. I see the efforts in his eyes; sometimes I swear I can watch his brain attempting to process. And then I see the pain when it just doesn't compute, and he switches off.

I hate that his relationship with his twin brother, Ethan, is so difficult and fractious. I know that this too will evolve, but it has been a thorn in my side for so long now, it is hard to imagine anything other than the state of fraternal siege we live in.

I worry about his future in so many ways. I want him to have the biggest, fullest, happiest, most independent life possible. I want him to always be surrounded by love.

But I know how harsh and cruel the world can be for those who are noticeably different.

And as much as I am alarmed by the statistics that have recently come out, how autism is on the rise as a worldwide phenomenon and is just increasing and increasing annually with little end in sight?

I am also weirdly comforted by knowing that Jacob will not be alone. That he will be be coming of age as an adult into a world increasing filling up with others like him, and the world will HAVE to change - and will actively BE changed by the higher functioning of his brethren - to accommodate Jake and his people.

1 in 88 is a number, a statistic.

But my Jacob is not a number.

He is a person.

A boy.

My boy.

This is the face of autism.

To me.

Jacob, March 2012

Art and Autism

I think about the connection between art and autism a lot. About how outside the box, committed to their singular vision both the artist and the autist, each in their own way, are.

I've been doing this for a while (see my best known post "From Autist to Artist") but it's been circling round my brain a lot these days, as Jacob's artwork has really taken off lately. Into the stratosphere.

If you've been following my facebook or Twitter streams you may have seen some of these:

"Bruce Wayne"

"Goku" (From Dragonball Z-Kai)

"Commissioner Gordon"

"Goku" (Again)

"Superman"

Drawing makes Jacob so happy. Time to draw is his big reward at school, and it's a great carrot.  You don't want to know how fast we go through a ream of paper these days. And I'm not complaining in the least.

What I am most struck with is the emotion in the faces he draws, even more then the details of certain parts like the ears (the ears!), or the way his noses look like noses; the way he captures a mouth with one line - and it so completely is a mouth.

This flies in the face of so much common "wisdom" about autistic people paying no attention to faces, or not being able to read facial expressions for emotion.

When I mentioned this along with a photo of Jake's art I posted on Facebook, a cyber-friend, who is herself on the spectrum, responded with this really interesting reflection:

What this has to do with his autism, if it's mere coincidence or if the way he perceives the world through its filters open up the artist space in him, all this is unknown and probably unknowable. And ultimately besides the point.

I don't have any answers here. This is just me ruminating out loud, in public (blogs are so lovely for that). And also, truth be told, showing off, sharing some of my son's wonderfulness with the world.

Because Jake deserves to be celebrated.

I do know this: Jake's drawings are alive, in the way that mere renderings are not. They are art, and he IS an artist. 

Jake is who he is.

A package deal.

An artist and an autist.

But mostly, he's just Jake.

My son.

<^><^>^<^>

I haven't been writing that much about autism here lately, as much as it suffuses our lives, and bits of it weave through almost every thing I do. The other bits of life have been more dominant.

But that's about to change. Tomorrow is April 1st, the beginning of Autism Awareness month, and Monday, April 2nd is International Autism Awareness Day.  And just in time for all of this, the CDC has released new figures for Autism rates that are making big news.

I'm sure you know the new numbers, but if you've been sitting in a cave and haven't heard:

1 in 88.

(And for boys it's 1 in 54.)

And these are figures for 2008.

Four years ago.

(A limited 2011 study? 1 in 38. No I'm not kidding.)

So I'm going to be talking about Autism a lot this month, and you should too.  Because it's not going away, and even if you don't have an autistic kid (or nephew or cousin) you are and will be affected by this.

And the autistic kids of today are going to be the autistic adults of tomorrow, contributing to and (re-)shaping our world. And figuring out how best to support them, how to establish a future world that nurtures and meets the needs of us all, really needs to be on all of our minds.

It sure is constantly on mine.

To be continued people... to be continued...

Because

Because he would rather skip than walk down the street... and he's so fast that I have to run to catch up...

Because he gives the best hugs, pulls my cheek down to his lips telling me "Big kiss, big kiss for Mommy" and then plants one on me with a loud smacking sound...

Because every day when I meet his bus, he turns around once we're on the sidewalk to wave and yell "Goodbye, Deba, see you tomorrow!" and his stone-faced bus driver flashes him the brightest smile you've ever seen...

Because he draws people with "all the parts" and his drawings breathe with life:

It took Jake 3 minutes to do this sketch of "Mommy" as he was in a hurry to play

Yes, that's Timmy & his fairies from TV's "Fairly Odd Parents"

This IS our cat's expression when Jake's around: anxious

Jake didn't get to finish the body, but I love Bruce Wayne's face here

I tell you: "If you've seen one kid with autism... you've seen ONE kid with autism."

Look at my Jacob with fresh eyes, anew every day, and every day he will astound you.

As he does me,

as

he

does

me.

I'm linking up to Shell's Pour Your Heart Out & Maxabella's I'm grateful for... because I am so grateful for my wonderful autistic son Jacob.

Looking for comments? To read or leave a comment, click on THIS post's title, or HERE, to bring you to the post's page view. Comments should appear below.

SOC Sunday: Ambition

All I can say is... thank goodness for Stream of Consciousness Sundays during this here NaBloPoMo month. Five minutes? I can do today. Here goes:

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I live in New York City. That means, on a normal day, there is always someone doing something more interesting, fantastic, and ambitious than I am.

And today was no ordinary day, it was the New York City Marathon, when type A personalities from all over the world descend on my city and run like the wind.

By the time I prodded my bleary self out of bed and sorted out the kids? Runners were already waiting at the foot of the Verazano Bridge in Staten Island ready to make the 26.2 mile trek thought the city to end in my 'hood in Central Park.

I was going right near there this morning, needing to deposit Jacob at Hebrew School yards from the park at 10. The city was eerily both bustling and empty, the sidewalks more full than the streets, cars and cabs heeding the snarled traffic warnings and steering well clear of the marathon route.

When I got home I Tweeted and Facebooked a version of this message: 

I've gotten 1 son off to Hebrew School & fed them both, but still have yet to shower. Meanwhile? People have already won the NYC marathon. Possibly they are more ambitious than I?

And I got a lot support. I was joking. But also? A wee part of me felt bad for not being out there handing out Gatorade and waving, shouting encouragement to those crazy brave and ambitious souls.

Especially the autism awareness runners, including my friend Jess's husband Luau who came in from Boston and ran with his hair dyed BLUE for autism awareness. No not kidding - look:

Today the weather was perfect for a run. Records were broken. Ethan and I watched on TV and cheered the winners on, happy to be type B armchair athletes in our warm, sunny apartment.

And yes, I got my shower.

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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...

Looking for comments? To read or leave a comment, click on THIS post's title, or HERE, to bring you to the post's page view. Comments should appear below.

SNSS: Sisters

Our lovely guest today is a woman who needs no introduction (but, of course, I will be providing one anyway) for it is none other than Jess of a Diary of a Mom. Jess has been blogging about autism longer than many of us, and, from the very beginning, she has been an amazing connector, a community builder, generous, reaching out to all. 

In 2009 Jess wrote, Welcome to the Club, a letter to help guide and ease the fears of parents whose children have been newly diagnosed on the autism spectrum. If you know anyone in this situation, please send them to this important post.

Her most recent efforts? The "light it up blue" autism awareness campaign whose letter to President Obama got her an invite to The White House for their Autism Awareness Month community event, an extraordinary experience which she then (again, generously) shared with everyone via her blog. (You can read about this here, in parts one, two, three, four, five, six, and seven.)

On the personal front, Jess is a mother to two daughters. Her youngest, Brooke, is on the autism spectrum; Brooke's older sister, Katie, is not. Katie is incredibly loving towards and helpful with her sister, and theirs is a beautiful story.

Jess is exquisitely sensitive to the needs of her children, to a depth rarely seen. And to combine that exquisite sensitivity with such powerful, moving, beautiful writing; and add in her strength of will, her community-building character? Is the reason why Jess and her blog are beloved and read by so many.

It is also the reason that while every other SNSS post so far has been original to this series, this one is not. Jess so wanted to participate in this series, as the relationship between her daughters is very important to her, but she just had too many commitments; it was impossible to add yet another plate to the many she is keeping spinning right now. So Jess asked if it would be OK to use a previous post of hers instead, as she has written often on this topic, near and dear to her heart. 

I felt that Jess and her place in our community was too important not to include here, so I have chosen this beautiful post about the relationship between her daughters (originally published in April, as "what she needed") to share with you today for Special Needs Sibling Saturdays.

I am sure many of you reading this already know and read Jess, but for those who don't you are now in for a special treat...

 @@@@@@@ 

  
Sisters - by Jess

She showed me the picture covertly so that Brooke wouldn’t see it.

“Look, Mama, I drew Brooke as Rapunzel in the tower and that’s me, climbing up her long hair to come save her! Don’t you think she’ll love it?”

Katie had been working on the picture for nearly half an hour before she finally decided that it was done. She presented it to Brooke with a flourish.

“Look, Brooke,” she said, beaming. “I made this just for you.”

Brooke took the paper from her and without so much as a glance handed it to me. “I don’t want it,” she said. “Sorry.”

Brooke and I had a chat. Ultimately, the best we could do was a parroted, “Thank you, Katie. That was very nice of you.”

Katie was crushed.

Later that day, Katie and our sitter, Julie had a special outing to the mall. For her birthday, Julie had gotten her a gift card to her favorite shop and had promised that they would hit the mall together to do some shopping. Katie couldn’t wait.

She’s been begging for a trip to the mall alone with a friend. (Not quite there yet, kiddo.) So the half-step toward independence meant the world to her. She had packed up her gift card and tucked her very own money into the wallet in her very grown-up purse.

They’d spent hours at the mall.

She came home carrying a shopping bag, flush with excitement. She pulled me in close for a secret. “Mama,” she said. “I got Brooke the best present EVER! She’s going to LOVE it! You know how she keeps saying she wants earrings just like me but we know that wouldn’t really work cause she’d try to pull them out cause they’d hurt? Well, I got her MAGNETIC earrings! Isn’t that the BEST? I’m sooooo excited!!! OK, shhhhh! Don’t tell her. I can’t wait to see how happy she is when she sees them.”

She reached into her shopping bag and pulled out a small, hot pink gift bag. She’d even thought to get a gift bag in her sister’s favorite color. “Brooke!” she yelled. “I got you a present at the mall!”

Her sister looked up from her drawing.

“You did?”

“I did. Want to see what I got you?”

Katie was beside herself. She couldn’t wait to see her sister’s reaction.

Brooke pulled the earrings out of the bag, set them on the table and went back to her drawing. “I don’t want them,” she said. “Sorry.”

Katie tried to explain. Perhaps she didn’t know what they were. Maybe she just didn’t understand. “Brooke, you can be just like Katie. See, they’re earrings, like mine. Look, Brooke, this is what you do with them ..”

Brooke let out a sharp shriek, then yelled, “I DON’T WANT THEM. SORRY!”

The dam broke. Katie couldn’t take it anymore. I talked to Brooke briefly. Said the same things I’d said earlier. Told her we’d talk about it again later.

Katie and I walked together into the kitchen, carrying the cast-off bag. I peeked inside. There were two other pairs of earrings in the bag that Brooke hadn’t even seen. I turned them over – $5.95 each. On her big trip to the mall, my girl had spent eighteen dollars of her OWN money on something she thought her sister would love. To no avail. Eighteen dollars.

I held my girl as she let it all out, the words tumbling over each other as she sobbed. “I just wish that there was a shot or a pill or something, Mama. Something, anything that Brooke could take that would make her autism just go away. I’m just so tired of it. I just wish I had a typical sister. I’ve just been trying so hard. I just want to show her that I love her but nothing’s working. Nothing.”

I said the right things. I did. I told her that she is the best sister that I ever could have imagined. I told her that she doesn’t always have to be, I told her that Brooke knows how much she loves her – that it would be impossible for her not to. I told her that she doesn’t always have the ability to show that. And above all, I told her that I know how much that hurts.

I told her that I understood. That from the bottom of my heart, I understood. I told her that Brooke might very likely come back to the earrings later. It had been a long day and she just might not be able to handle something new. But I knew that wasn’t the point anymore. When there was nothing more to say, I held her and let her cry.

Last night, after presenting the Autism Awareness mural to the mayor, we went out to dinner at a local mall. During dinner, Brooke needed a walk. “Ooh, Mama. May I take her, please?” Katie begged, just like she always does. “I promise I’ll be responsible!”

We’d never agreed before, but the mall was quiet and it seemed like a good opportunity for a first run. Brooke resisted. “No, Mama would.”

With some cajoling, she agreed to walk with her sister.

We gave them strict parameters and then watched them walk away. Two minutes in, Luau said, “You going or me?” I got up and headed in the same direction.

By the time I reached them, they were headed back toward me, walking arm in arm. Periodically, Brooke would spin out, then come back and re-attach herself to her sister. Each and every time she came back, Katie’s arms were open.

Brooke stopped walking in front of the entrance to a shop. I wondered if she was going to go in. Instead, she leaned into her sister and hugged Katie for all she was worth. Katie hugged her back, grinning from ear to ear. I felt like a voyeur as I feverishly snapped a picture with my phone.

They began to walk again, slowly, lazily. Katie kissed her sister’s head and said, “Thanks, Brooke, I needed that.”

And her Mama thought, “Me too, baby. Me too.”

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As you can see from what have just read, Jess is an "Autism Mom" extraordinaire.  I do not say this lightly: I have never yet met a parent more aware of exactly who each of her children are, and what they specifically need as Jess. She is an inspiration and a role model for me, truly. 

And now? You really must go back to Jess's blog, a Diary of a Mom, and read more. She doesn't have a "best of" page, but that's OK because you can click on any month of her archives and just start reading and you will be astounded. But let me point you to a few specific posts, anyway: 

For more about the relationship between her girls, these posts, from last October's "Spotlight on Siblings" week are wonderful: this pair about another sibling reaching out to Katie, big sister as little sister and little sister becomes big sister, are extraordinary. Also this one, and this one are truly touching.

And then, because telling her own family's story is not enough, here is a great post about how to help YOUR children: what siblings would like parents and service providers to know.

Whatever she is writing about, Jess so honestly and beautifully shares her love, her fears, her joys and her heartbreaks. Go, read! (And have a box of Kleenex handy, you'll need it.)

And of course, Jess is yet another SNSS guest who can also be found posting at Hopeful Parents. Her day is the 17th of every month.   

Finally, you can find and follow her on Twitter and "like" her on her Facebook page, where she is, of course, building yet another support community. 


Looking for comments? To read or leave a comment, click on THIS post's title, or HERE, to bring you to the post's page view. Comments should appear below.

A serving of shameless self-promotion with a little guilt on the side.

Hello there, friends.

I'm really not good at this.

The business side of bloggy things. The razzle and the dazzle. The self-promotion machine that I am supposed to be.

I'd really just rather be writing. Writing about autism, my mom, my kids, my dead father; pretty much anything else. But I've been told this needs to be done. I need to "promote" myself and my blog.

But you know? I'd really just rather be writing.

But also, the bald truth? I like readers.

I know I'm supposed to say I'm an artist, that I would write even if I had one reader, that I write for myself. And to some extent that's true.

But also? Pure balderdash.

This is a blog, not a journal. It's called "Social Media" after all. I want people to read me. For what is an over-sharer with no one to share with?

So, one cup of shameless self-promotion coming up......

OK, I'm Jewish, I'm a mom. Jewish moms are notoriously famous for successfully employing guilt as a motivating factor, so let me try that one out on you folks here:

Darlings, I don't ask for much do I? I don't. No, nothing at all, not ever.

And me? All I do is give to you. Give, give, give.

So, could you please, just this once, do a little favor for me? Just this one little, two little things?

After all, I carried you around inside my body for nine long months, fed you from my very own breasts... no wait, I think I'm getting confused here...

Let's try that again... attitude change...

Yo, peeps, let's DO this thing, OK?

Takes like about two seconds, maybe 10... OK, a minute, tops. EASY stuff: no signing up, no signing in, just clickety, click, click. Done!

FIRST, Facebook: Find my Box...

(Take your mind out of the gutter. Yes, YOU, I heard that thought.) 

Look over on the sidebar on the right (no, your other right) yes, THERE.  The box that says "Find us on Facebook" on the top. It looks like this:

Now, here comes the tricky part:  Click the "like" button.

(Unless you don't like my blog. And then, um, why are you here?) 

Yes, that's it! Done! Voila! Yay, you!

Next?

Babble.

Babble, babble, babble. They seem not to know I exist. This irks me.

Recently, in honor of Autism Awareness Month, they came up with a list of "Top 25 Autism Spectrum Blogs."

I like this. I commend this. I would like it better if I were ON that list.

Now, don't get me wrong, 25 wonderful bloggers were on that list.  They are fabulous, many are my friends. I don't begrudge them their seat at the table, not for even one instant.

But the list needs to be longer. At least 26. (But probably more like 50, since off the top of my head I can easily name at least 20 others who are wonderful and should be noted, too.)

And here's where you come in... you can help correct this! Let Babble know I exist! Tell them I'm an autism blogger to be reckoned with!  (I know, I don't have autism in the title of my blog. Did I mention I'm really bad at marketing and self promotion?)

Here's how: Go HERE.  Find ME.

(I'm sorry I can't tell you exactly where I will be, am currently #13 on the nomination list, but you should be able to move me up. It shouldn't be hard to find me -- "The Squashed Bologna," remember?)

Next... wait for it...  Click the "I Like This" button (yes, the one with the thumbs-up icon below it).

Once again: Ta-da! You are done! Sheer simplicity!

That's all folks. About a minute of your time, and you have helped a blogger out. Feel good about yourself, you've been a good friend today.

And? A great big THANK YOU. From me to you. You rock! You're the best! (No, really, YOU are.)

(And Tomorrow? Back to our regularly scheduled program.) 

Finally... just an observation: I think I have used more parenthetic clauses in this post than any other yet.

Yay Me! Earning my title: "Queen of the Run-On Sentence (with parenthetic clauses)" honestly.



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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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Every day is Autism Awareness Day 'round these parts

Here is my beautiful son, Jacob. He has Autism:

There, so now you are aware.

OK, as you (hopefully) know, today, April 1st is the kick-off of the very official (and alliterative) sounding: Autism Awareness Month, with tomorrow, April 2nd being World Autism Awareness Day. Well now, that's starting to be a mouthful.

Rumor has it they were originally going set the big "Day" for April 1st, to coincide with the month's kick-off, but then some wise person realized it might be a tad um, cruel? ironic? to have that fall on April Fool's Day. Ya Think?

But around here? Well every day is really about Autism Awareness now, isn't it?

There isn't a day that goes by that I'm not acutely, astoundingly, profoundly and matter-of-factly aware of my son Jacob's autism.

You would think that by now it would seem to be old hat, taken for granted, a given. And in some ways it is;  just Jakey being Jakey.

But this, too: as the boys get older and as the ways that I parent, talk to and interact with Jacob and his (mostly) neuro-typical (NT) twin brother, Ethan, grow more and more disparate?  I am strangely growing more aware of Jake's autism day-to-day, rather than less. Go figure.

The fact that it really isn't going to go away, he really isn't growing out of it, and that this Autism Mom thing is rather surely a lifetime gig? Starting to settle into my consciousness about now, now that he is eight and a half and perched on the edge of little boy becoming big boy, soon to morph into teendom.

I might remember to wear blue today, I might not. I am not in a place to make big promises.

Why is blue now the official color of autism, anyway? (I thought it was "Rainbow Puzzle.") Well... I know some people think it's because that's the color of Autism Speaks logo, but I like to think it's blue from autistic author Daniel Tammet's lovely book "Born on a Blue Day."  Because I really like what Autistic folks have to say, themselves, about themselves and how they experience their neurodiverse brains.

Well, there is a lot of wonderful going on right now...

Buildings are being lit up blue for WAAD. (I'm just not typing the whole thing out each time, OK, you all know what I'm talking about, yes?) The amazing Jess of diary of a mom has been one of those spearheading a campaign to light the White House blue.

Alysia of Try Defying Gravity got Parents Magazine to post autism family stories on their blog all month long starting with hers, today!

Just about every autism blogger I know -- and we are many, a veritable small (and feisty) army -- is posting about it, embracing the blue or explaining why they're not.

I felt I should do one of two things... write another "important, big thoughts" post about autism like this one: From Autist to Artist  or this one: The Beauty of Each, Our Every Child.
 
Or, on the other hand, I thought I might write a moving tribute to my beautiful son Jacob, celebrate his specialness, the gift that he is in our lives, a balanced view of the joy and the struggles....

But, ahhhhhh, crap, that was just not to be. I've had sick kids home from school (one or both) for three days now. My heart is just not into it. I want to burrow inward, not expand outward.

I am sleeping neither well nor enough. In short: I am really worn out, worn thin. (My soul that is, my body... due to stress eating... thin not the operative word here.)

I feel light-years away from brilliance, from inspiring anyone, least of all myself.

I am so glad that I started the Special Needs Sibling Saturdays guest post series, and have some amazing posts queued up in the hopper, so that at least something useful and wonderful will appear here every Saturday for the next month, and beyond.

And yet, I feel like I have no good excuse for this. There is no one thing, nothing particularly, specifically going wrong in my life.

It's just the cumulative stress; the day in day out, never a day off, never turning the reins over to someone else, never catching my breath before running off to the next mini-crisis, never just turning my responsible brain off even if I have handed a few tasks over to someone else.

I am feeling crushed, not by a boulder but under the million pebbles, the aggregated weight of being a special needs parent, of autism, today.

And I so didn't want this to be the story I told today.  I want to tell you all about the beauty of my son Jacob, who is on the autism spectrum... or has autism... or is autistic or... I don't know what's the "correct" way to phrase it anymore.

My friend Peter, who is himself on the spectrum with NVLD has a son who is likewise "on the spectrum" somewhere but without a clear diagnostic label.  What he says about his son is: "G" has a 100% diagnosis... of being "G."  And some days that's what I want to say about Jake.

Jacob is... Jacob. Unique and beautiful.  My autistic snowflake.

OK, I know I'm rambling now. Some days I like to ramble, to explore my brain, where my tangled thoughts take me. Today I just feel lost, unfocused.  But today, this will just have to do.

This is me, this is my (ADD-rific) brain, this is my family, with autism. Messy, but hanging in there.

Here is my beautiful son, Jacob. His favorite color is yellow. He has Autism:

There, so now you are aware.



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