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...

This is Jacob. This is autism.

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

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

There is much destructive misinformation spreading around the world.

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

I can't...

I just can't...

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

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

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

For starters, read these, here:

A letter to Elisabeth J.A. by Jillsmo

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

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

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

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

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

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

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

Peace to you all. More words here soon.

Dear Ann Coulter: This is who you insult with your words

A friend has pointed out that during the Presidential debate last night, the conservative pundit Ann Coulter had tweeted this little gem of an insult to our President:

And she started a link-up on her blog, invited us, who have special needs children to tell her: "Dear @AnnCoulter: This is who you insult with your words" and share a picture of our child(ren) who may some day be (or already have been) called out with the term "retard."

Ann, here is my son Jacob, a beautiful 10 year-old boy with autism:

Spend five minutes with him and you'll know he is different. He is likely to ask you, over and over again, who Patrick Ewing is, or who the coach of the 1984 Celtics was. He is likely to get really excited and jump up and down and flap his hands as the feelings so move him. He is just as likely to carry on a conversation with your pet poodle as he is with you, should you be walking your dog down our street.

He would never call you or anyone else a "retard." He does not know what that word means, nor would he cruelly insult anyone on purpose. But you know better. And still, you do this.

I know you don't care. You have shown time and time again your willingness to use the meanest language you can just for the shock value, and because yours is the party of the top dogs, of the survival of the fittest, of only the wealthy 1 percent who counts and the rest of us can drop dead for all you really care.

You know that language matters, that language can hurt, diminish, dehumanize. It is not news when I tell you this. And I know, you still don't care. But still I must say it, must say that your use of the "R-word" as an insult is dead wrong and downright evil, and call on you to stop.

And, furthermore I must point out that it was completely inappropriate to so childishly name call a standing President of the United States. It has amazed me how many conservative Tea Party type Republicans, the kind who keep demonizing modern morality and call for a return to "old fashioned values" see nothing wrong with shredding the dignity of the Office of the President.

Even if they disrespect the man holding that office (and oh, they do) - he *IS* the elected leader of our nation, and thus even if they find fault with him, there should be a level of respect in the way he is discussed. They do not seem to care that they are reducing the status of the OFFICE of the President when they engage in their wholesale dismissal of the man. Getting in their licks seems more important than retaining the high regard of all the other nations on our planet.

And I cannot help but believe, deep into my bones, that this is racism, through and through. The dismissiveness with which he is spoken, the insulting, demeaning, diminishing and disrespectful language used toward President Obama, over and over, is the belittling kind of language used by people toward those they think of as "lesser" and the President's brown skin and African American heritage put him in that category in their minds, and thus free their vitriol to find a new low.

As nasty as the Right was toward Clinton, a different sort of language was used for their insults of him. Because he was white. No dancing around it. And I am sure if the President was a woman there would be an equal lack of respect in the tone used to cut her down to size.

I don't talk about politics much here in my blog, I am mostly a personal storyteller. But some things are too big and wrong to let stand, and thus I'm up on my soapbox today, concluding with this:

Ann Coulter, and the rest of you: stop being so racist in the way you speak of our President, and stop using language that hurts MY child, a boy with autism whose brain works differently than yours.

He is not a "retard," he is not less valuable than your neuro-typical kid.

And he is also something of great value that you are not: nonjudgmental. Kind.


Oh, and this is a blog-hop, so if you've written a post on this subject yourself, please add it on below!

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!