Monday, August 03, 2015

For Jess, 'cause she's awesome

I recently found myself in a conversation about the ethics of restricting toys, books, tv shows, and other things from autistic kids (or, really, any kids) (or, really, any people) because they are not "age appropriate."

In the heat of the conversational moment, the well-reasoned, articulate thoughts on the subject that live somewhere in the recesses of my mind had a hard time turning themselves into actual spoken words. I found it was better to end the conversation before it turned into an expletive-laden diatribe THAT COULD ONLY BE CAPTURED IF I SAID IT IN ALL CAPS.

As my cooler head prevailed, I did what I often do when words escape me, and I looked to see if the wise and articulate Jess Wilson from Diary of a Mom had already said everything I wanted to say. After surfing her blog for a while, I couldn't find what I was looking for, so I messaged her and pleaded with her asked her if she had something in the archives that I'd missed.

She didn't, she said, but she'd see if she could put something together.

And, in less than a week, she produced a thoughtful, articulate post, entirely expletive-and-diatribe-free.

Please click here to read it.

Thanks, Jess. I owe you one.

Sunday, August 02, 2015

Our Wedding Neighborhood Festival

Yesterday, as Bud and I were out for a walk together, I asked him if it would be okay for me to write a blog post that told the story of his involvement at our wedding. He quickly said that it would. I reminded him that it would be published on the internet, and that lots of people who don't really know us would read it. He said that sounded great.

Since then, he has asked me many times if my blog is done.

The truth is, it has been a busy weekend and I haven't even started.

But Bud is really excited to share this with you, so I'm hoping that this preview will be enough for him (and for you) for now. The full story will follow sometime later this week.

For now, I give you three pages from a PowerPoint Bud created, which is titled "Our Wedding Neighborhood Festival":




To be continued.

Wednesday, July 29, 2015

Step by step

Another incredible thing happened to me last month, actually on the same day that I married Brian: I became the step-parent of an extraordinary four-year-old boy, Buster.

Of course, Buster has been in my life for some time now, but even so, my marriage to his father has made me stop and think even more deeply about the role I play - and will play - in Buster's life.

Buster lives with us part-time, and we have been sharing a home for almost a year. When we made the move from play dates to real life, I found myself almost immediately confronting a bias that I didn't even know I'd been carrying around with me.  See, I knew that raising a child who doesn't have autism would be different from raising a child who does, but - and here's where the unfair bias comes in - I'd assumed it would also be easier.

It's not - or, at least, it's not for me. It makes sense, I guess. Bud is the only child I've ever lived with. Bud and I have been doing our thing together for fifteen years, and everything I know about parenting has grown up around him.

It's like you spend fifteen years raising puppies. You focus all your energy on learning about puppies, observing and interacting with puppies, taking puppy classes, talking to puppy-raising friends, until you finally get to place where you hit a puppy groove and find your puppy mojo.

And then one day, somebody drops off a baby kangaroo at your door.

Now, don't get me wrong. Baby kangaroos are AWESOME. They're fun and cute and they make you laugh and they make your heart swell, but I'll tell you what: baby kangaroos have no interest in playing with your squeaky toys and they are not motivated by your milk bone dog biscuits.

It is, very much, like starting all over again.

There is a whole lot that I have to say - and even more, I'm sure, that I will want to say in the years to come. I'm certain that the wisdom of the blogosphere would prove invaluable to me.

But here's the thing: you won't be reading much about my life with Buster here on the pages of the blog. Because, in addition to learning about the care and feeding of a kangaroo, I am simultaneously learning how to be a step-parent.

Here's what I know so far:

1. Being a step-parent is inherently different from being a parent, and

2. It is not as simple, nor as straightforward, as The Brady Bunch made it look.

As I think about how to negotiate my place in Buster's life, especially in these early years, as he's making sense of who Bud and I are and how we have come to land in the middle of his life, I'm finding that as a step-parent, I need to err more on the side of step and less on the side of parent.

Because here's something I know from being Bud's mother: the mom role is singular. Buster has a mom, and I am not her. I can be a friend, a mentor, and a role model. I can love him, celebrate him, console him, encourage him, redirect him, support him, and challenge him. But I can never try to be his mom. He already has all the mom he needs.

I also need to remember the place I hold as a non-decision-maker in his life. His parents need to collaborate on the big-picture decisions about what he needs and how to provide it. If I have opinions, I can share them with Brian, but only if I understand that, ultimately, I don't get a vote. And I'm okay with that. It's part of the package deal that I signed on to, and, frankly, I got a really good deal.

So, I'll write sparingly about Buster here, but it won't be because he's a minor player in my life. On the contrary, he is central to it. But if I have concerns about overstepping my rights in sharing Bud's story (and you know that I do), I have twice the concern about doing so with Buster. And if Buster's mom ever stumbles on to my writing, I hope that all she will see in it is respect, both for him and for her.

Now if you'll excuse me, I have to run. I have a kangaroo to chase.

Monday, July 27, 2015

Face the Face(book)

When I started blogging, I was part of a little group of like-minded bloggers who made the rounds of each others'  blogs every couple of days to catch up and have conversation. Once our corner of the blogosphere exploded, many of us started to rely on RSS feeds to tell us when our favorite bloggers had new posts.

It seems that things have changed since then, and to a great degree, Facebook has become the primary source for information and updates. My blog stats tells me that the vast majority of people who read my last two posts came to me via Facebook.

Another interesting change since I was last blogging on a regular basis: people seem to be a lot more comfortable commenting on the Facebook link, instead of on the post itself. That makes sense. If you're a Facebook user, chances are good that you're already in the habit of "liking" and commenting there. And the Blogger interface can be cumbersome at best. In fact, several people have told me that they have not been able to get their comments to post there at all.

So it seems like Facebook is a great platform.  But it's trickier than it seems.

Let's look at RSS feeds. RSS feeds work this way: I tell RSS that I like a blogger. That blogger posts something. RSS tells me a new post is up.

Simple. Clean. Reliable.

In contrast, if I understand it correctly, this is the way Facebook works: I tell Facebook that I like a blogger. Facebook files away that information for future reference (their own). That blogger posts a link to a new blog entry.

Facebook smiles.

Facebook adds the blogger's link to the news feeds of a small number of their followers. I may be one of those people, but there's a good chance that I will never see the link in my news feed.

Facebook tells the blogger that they would be happy to share the link with more people who would like to see it.

For a fee.

Right. As a blogger, if I want people who have "liked" my page to see the things I have posted there, I need to give Facebook a kickback. Only, my blog doesn't generate income. I don't have ads. I don't get paid. So I'm certainly not going to start paying to get readers.

From what I hear from people who know more about this sort of thing than I do, Facebook also uses some complicated algorithm to increase or limit traffic based on the popularity of a post.  So, if Facebook shares my link with 200 people, and many of those 200 people like it or comment on it, Facebook will plop it into the news feed of more people who have "liked" my page. If, however, those initial 200 people just kind of yawn, my link will die a quick death. (Which seems counter-intuitive to me, but, then, what do I know?)

So, anyway, what is my point here?

1) If you're on Facebook and you haven't "liked" my page yet, you may want to, because, as I've said before, one of the best parts of blogging is what happens in the comments, and a huge portion of the commentary is happening on Facebook. You can find the page here.

2) Even if you "like" my page, Facebook may never let you know when I've posted to it. I'm sorry about that. I don't have any idea what to do about it.

3) If you know a clever work-around to get Facebook to show you the stuff you really want to see, or if you have any greater understanding of The Ways of the Facebook (What, for instance, is the difference between "liking" and "following"? And why would anyone want to "like" me, but "hide all posts" from me? Can't they just avoid all posts by not "liking" me?), please share your wisdom with the rest of us.

And if you're reading this post because Facebook plopped it into your news feed, you can rest assured that I did not pay them to put it there.

Friday, July 24, 2015

Like the ceiling can't hold us

Me again.

How about that? In two days, I've matched my output for all of 2014. Not a bad re-start, eh?

First, thank you so much for the warm welcome back. It's been staggering, actually. I didn't expect to be met with where-the-hell-have-you-been hostility or anything, but - well, I'm not really sure what I expected. Crickets, I guess. But your messages and your "likes" and your kindness have meant so much to me.

Okay, I'll stop before I go all Sally Field on you. ("You like me! You really like me!")

I've decided that I'm not going to try to recap everything that's happened in my life over the past whatever months and years. I'll just let the narrative unfold from here, and when there's some back-story that's critical to understanding the big picture, I'll give it to you. The rest of the story can remain in the shadows, comfortably gathering dust.

There is one piece of information that I want to give you up front, though, because it's big and it's awesome and it's actually still new enough that it gives me chills every time I say it out loud.

I got married last month.

I know, right?

HUGE.

Last night, I was talking to my husband (my HUSBAND!) about this tentative foray back into writing, and I told him I'd need to come up with a blog name for him.

"Uh," he said, tentatively, "how about Brian?"

Brian. Which is interesting, since "Brian" is, you know, his actual name.

I hadn't really considered using his actual name. I was coming up with names like Terrapin and Wonderdude, but "Brian"?  Never occurred to me.

Even when my own real name became linked to the blog, I continued to refer to Bud as "Bud," with the hope that in the future, it would be difficult for people to Google him and land here. My reasoning was that it would give grown-up Bud the option to disavow all connection to blogger me in the future, if he chose to do so. (Though, frankly, if Bud ever has concerns of that magnitude, this blog will be gone before you can say "toaster brain.")

So, for Brian to opt to be Brian here in blogland?  Well, suffice it to say that I take it as a good sign that my husband is not reserving the right to disavow all connection to me at some point in the future.

Anyway, back to the point of the story: Brian and I got married in June. I'll skip the back-story of our relationship, except to say this: with him, I have exhaled for the first time in a very, very long time.

Our wedding was perfect - a small gathering in the backyard of our good friends. During the ceremony, Brian's brother did a reading that we'd chosen because it resonated so completely for both of us. It's called "A Marriage" and it was written by Michael Blumenthal.  It goes like this:
You are holding up a ceiling
with both arms. It is very heavy,
but you must hold it up, or else
it will fall down on you. Your arms
are tired, terribly tired,
and, as the day goes on, it feels
as if either your arms or the ceiling
will soon collapse.

But then,
unexpectedly,
something wonderful happens:
Someone,
a man or a woman,
walks into the room
and holds their arms up
to the ceiling beside you.

So you finally get
to take down your arms.
You feel the relief of respite,
the blood flowing back
to your fingers and arms.
And when your partner's arms tire,
you hold up your own
to relieve him again.

And it can go on like this
for many years
without the house falling.
My eyes are filling up right now just typing the words on the screen. The ceiling had gotten really heavy, friends. And my arms had gotten tired and were starting to feel weak.

And then I met Brian.

I keep replaying a moment in my mind - Bud and me dancing on the lawn during the wedding reception, singing along with the Pharrell Williams song, "Happy" - "Clap along if you feel like a room without a roof..."

Our lives are still as challenging now as they were before we were together. Things are still messy and complicated and hard to negotiate. The ceiling is still there and it still needs to stay up, but it's no longer pushing us down. And some days, we barely notice it.

Clap along, indeed.

I'll share one other thing before I end. It's one of our wedding pictures, courtesy of Bud.


I'm the one on the right.

Wednesday, July 22, 2015

You own everything that happened to you

Back in April, two days shy of her 61st birthday, Anne Lamott wrote a kickass Facebook post that patched together her accumulated wisdom from the past six decades. The whole piece is fantastic, but one paragraph climbed inside my brain and has been roosting there for the past three months. She wrote,
Writing: shitty first drafts. Butt in chair. Just do it. You own everything that happened to you. You are going to feel like hell if you never write the stuff that is tugging on the sleeves in your heart--your stories, visions, memories, songs: your truth, your version of things, in your voice. That is really all you have to offer us, and it's why you were born.
This morning, I woke up to an email from someone called "morning dew" (Hello, morning dew. Thanks for the email.) She wrote, "Hi! I was hoping you could fill me in, or link me to, what you're currently writing. Your blog, though currently an archive, has meant a lot to me." 

She went on to say lovely things, but I got stuck back there on those three words - "currently an archive."

Yikes.

She's not wrong, of course. I've written just one post in the past year. That's hardly prolific. But still. Archive.

It's not that I don't have anything to say. I have composed full posts in my head that I've never put in writing. I've put posts in writing, but let them linger in draft form. I've written and deleted more than I would have thought possible.

The thing is, I can't reconcile my inside voice with Anne Lamott's shared wisdom: "You own everything that ever happened to you."

Except that I don't feel like I do.

I'm not just talking about Bud's privacy here.  Every parent who blogs has grappled with the line between the appropriate sharing of a parent's story and the violation of a child's right to privacy. I started writing about that line when Bud was seven, and I feel like I've developed really good instincts since then. If I've ever felt a hint of "I wonder if that crosses the line," I've edited it out. As Bud gets older and the issues become more complex, the area on the privacy side of the line has gotten a whole lot wider than the area on the sharing side of the line, but still, the line remains clear to me.

But Bud is not the only person who has been in my life. Anne Lamott tells me that I own everything that happened to me. But virtually all of those things that happened to me involved things that happened to other people, too. 

Things were a whole lot easier when I started blogging back in 2005 and was completely pseudonymous. Nobody who knew me in real life even knew I had a blog. Slowly, over time, I started to tell people about it, but even then, I had some control over who knew about the blog and who didn't. Then, in 2010, a number of things happened in rapid succession - the Hairdryer Kid series took on a life of its own, I got a bit of recognition, and suddenly, I was out there on the internet as a real person with a real name. Google the blog and you find me. Google me and you find the blog.

At first, it wasn't really a problem. I'd written carefully, so there wasn't much on the blog that I was reluctant to share with the general population. The few things that made me go hmm got deleted. But I quickly found that writing new pieces became a lot more challenging, and the more complicated the things I experienced (and believe me, the past five years have been nothing if not complicated), the more difficult it was to find a comfortable way to write about them. So the posts became less frequent until they finally petered out completely.

And yet, that Anne Lamott paragraph has been haunting me since April. I own everything that ever happened to me. I am going to feel like hell if I never write the stuff that is tugging on the sleeves in my heart - my stories, visions, memories, songs: my truth, my version of things, in my voice. But writing it and tucking it away in a drawer - that just doesn't do it for me. I have never been a diary-keeper. What kept me writing when I was writing was the dynamic element of blogging - the sharing of stories, the comparing of perspectives, the crowdsourcing and the collective creative problem-solving. Without someone to write to, it hardly seems worth the energy to write at all.

I'm getting to that point in the post that I've gotten to many times over the past year - the point at which I've said what I've come to say and it's time to publish (and go public) or perish (and hit delete). Here I am at the end of the post, and I'm still not sure which I'll do.

But I'll feel like hell if I never write the stuff that is tugging on the sleeves in my heart. I'll feel like hell if here, smack in the center of midlife, I decide to be an archive.

Here goes nothing.

Tuesday, August 26, 2014

I see the picture you're not posting

Hey, you guys?

I just want you to know, I get it. I get how hard it is at this time of year when your Facebook feed is full of the shining, happy faces of your friends' kids on the first day of school. I know how much it stings.  I know the pain, and then the guilt you feel that someone else's joy should cause you pain, and then the loneliness you feel because, it seems, nobody else really seems to get that this is a really hard time of year for you. Because it should be happy, right? Look! Shiny, happy faces everywhere! This is a Very Happy Time.

But it's okay to feel the way you do. It's normal to look at pictures of shiny faces and feel sad for your child, whose anxiety about a new transition kept him up for most of the night. It's okay to look at pictures of crisp new outfits and feel the pang of hurt for your child who was so bothered by the texture of the treasured new outfit she'd chosen that she cried and cried all morning until you convinced her that it really was okay to wear her old, soft t-shirt on the first day. I understand how hard it is to see the photo of the happy kindergarten student as he boards the bus for the very first time, as you prepare to drive your high schooler across town to school, because he just isn't ready to ride the bus on his own yet.

I get it. It's really, really hard.

But you know what? I posted a happy picture of Bud on Facebook this morning, too. It was a real, genuine, happy moment and he had a good first day of school. But I haven't exhaled yet. I won't exhale for weeks - if I exhale at all.

I keep thinking about something Jess from Diary of a Mom posted last December, as the holidays approached.  I think it's a good thing to remember now, too.


So, really. It's okay. I get it. I see the picture you're not posting.

And I'm not posting one just like it.

Wednesday, April 02, 2014

1 in 68

Depending on whom you ask, today is World Autism Awareness Day, World Autism Acceptance Day,  or Everyone Matters Day.  From my perspective, awareness, acceptance, and mattering are all vitally important, so I say bring 'em on.

Last week, in the lead-up to these events and to the month of April, which is Autism Awareness Month, the CDC released the latest autism prevalence rates - now 1 in 68 children and 1 in 42 boys in the U.S.

I have a new post up at The Huffington Post with my thoughts about what it all means.

Click here to read it.

And happy awareness and acceptance day.  Remember:  you matter.

Saturday, December 21, 2013

Christmas, present

I have a new piece up at The Huffington Post, called Zen and the Art of Alzheimer's.  As I said when I posted the link on the MOM-NOS Facebook page, I rarely know what to get my father for Christmas, but this year I hope I can give him the perfect present.

Happy holidays, friends, from Bud and me.

Monday, November 18, 2013

This is autism

There's a flashblog going on today on blogs across the autism blogosphere in response to the most recent press release from Autism Speaks' co-founder Suzanne Wright, in which she writes,
"These families are not living. They are existing. Breathing – yes.  Eating – yes. Sleeping- maybe.  Working- most definitely - 24/7. This is autism.  Life is lived moment-to-moment.  In anticipation of the child’s next move.  In despair.  In fear of the future.  This is autism." - Autism Speaks "A Call For Action," 11/11/13
As you might imagine, this fear-inducing, desperation-drenched approach to "autism awareness" has been received with anger and offense from a large portion of the autism community, who believe that, in fact, they really are living - and quite well, thank you.  
In response, the "This is Autism" flashblog was born - a single day on which bloggers from all areas of the autism blogosphere, autistic and neurotypical alike, would write about what autism is to them.
There is plenty I could say I could say about my life as the parent of a child with autism.  It is hard, exhausting, beautiful, inspiring, challenging, exciting, messy, ugly, rewarding, confusing, and wonderful.  In other words, as Emily Willingham says, it is just plain PARENTING.
But instead of waxing on about my own experience, I decided to call on the resident expert in my household - the one who experiences autism from the inside out - to talk a little about what it really is to him.  Here's what I got:

This is Autism
By Bud
It’s good for your brain.
Autism is good at thinking.
I’m good at thinking about things way back when.
I’m also good at eating sandwiches.
Isn’t it great?
And you know what?
My autism is good at things like:
I’m good at eating bananas.
And I like making PowerPoints, I do.
And I love music.
And I like watching Fetch on PBS Kids.
And you know what?
I’ve got a computer I can play on.
I can read.
And write.
I like watching Teletubbies. It begins with a capital T.
I like dancing.
Autism is, like, your brain.

And there you have it.  Suzanne Wright had it partially correct:  We are breathing - yes. Eating - sandwiches. Sleeping - when we're not dancing. And working - on PowerPoints.

This is our autism.

And our autism is, like, good for your brain.


For some compelling responses to Suzanne Wright's statement - and for an explanation of why we'll be retiring our blue light for the awareness campaign sponsored by Autism Speaks and channeling our donations elsewhere, please read any of the following:

I Resign My Role at Autism Speaks by John Elder Robison

Why Autism Speaks Doesn't Speak For Me by Emily Willingham

ASAN - AAC Statement on Autism Speaks' DC "Policy Summit"

No More - A Letter To Suzanne Wright by Jess Wilson