Autism Unexpected: Social Media and Autism: A Life Line

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Social media is all the rage these days. Twitter, Facebook, Foursquare, Digg, StumbleUpon, Kirtsy, blogs, and the myriad of other ways that individuals around the world connect online these days have changed the face of the world.

It’s easy to make fun of social media. How many ways do you need to broadcast what you are doing right this second? For parents of children with autism and people with autism themselves, however, social media can be a lifesaving conduit to a social world that is too difficult to interact with IRL—in real life. For people like us, social media is real life.

Having a child with autism can be extremely isolating. Friends who don’t understand what you’re going through or who don’t want to be around a difficult child may fall away. It gets harder to take an unpredictable child into public. It can be hard to plan playdates ahead of time if you don’t know how your child will be feeling at a specific time in the future.

Activities that typical kids enjoy may be too overstimulating for a child on the spectrum. Sometimes even when your child wants to and is capable of participating in the social sphere, the invites just don’t come. Some days it’s just too hard to face the stares and judgments of onlookers, so parents end up staying home.

This is where the beauty of social media lies. When there is no one in your life to turn to in the middle of the day (or the middle of the night), Twitter is there. When you have a question about a treatment and you want to know others’ experiences, blogs are there. When you just need some adult contact to take your mind off of all that is so difficult, Facebook steps up.

For people on the spectrum themselves, online communication eliminates the pressure to respond immediately in conversation and lets an individual choose what conversations they want to take part in. Web conversation is also more black and white, reducing the need to understand all the non-verbal parts of communication that can be so difficult for those with autism.

I started blogging coincidentally at almost the same time I started to suspect that my son Jack was autistic. I know for a fact that my and Jack’s paths would have been radically different without the social media to which my blogging introduced me. Social media helped me get to the accepting, knowledgeable place I am far more quickly than I could have gotten there myself.

There is a lot of division in the autism community—and the autism social media community is no different. Much of what I initially found online terrified me. But more than that, I found people like me. I found women going through exactly what I was going through. Even more importantly, I found women who were a few steps ahead of me in the autism journey. Not only will you find support for yourself if you put yourself out there, you will often find that you are offering comfort to those who follow you.

There are a tremendous number of autism bloggers who offer comfort, ideas, and practical advice. While I would not recommend taking as gospel anything that you read online in terms of treatment or medical advice, I will say that with a little bit of work you can find a supportive group of parents who can help hold you up.

There have been times that I haven’t felt confident in my knowledge about developmental disabilities and have had my tribe of online friends reassure me—and offer me practical advice. There have been times I have felt destroyed by something that happened at my son’s school and have had that same community help me hold it together. Some days that happens on my blog, some days it happens on twitter, but regardless, I know that if I need someone who gets—really gets—what I am going through, they are there almost immediately. This is something that is very hard to find in real life.

There are, of course, dangers with publishing so much information online. You have to be careful about your own privacy and that of your child. Many people write anonymously for this very reason. Needless to say, you should assume that anything you write online, even without your name attached, will be found and attributed to you. Just as the best things about social media are its sense of community and interconnectedness, those very things can turn into negatives if you write things you wouldn’t say to someone in person.

I try to write as if the person I am writing about is standing behind me, reading over my shoulder. This includes teachers, administrators, and a potential court of law. Understand that if you do take advantage of this incredible online resource, your words are permanently available should you have need to sue the school district or even go through a divorce.

The down sides are strongly outweighed by the benefits if you use these social media tools carefully. In a very real way, social media matters. Blogging, Twitter, Facebook, and the others can be a very real lifeline that is inaccessible in your concrete life. Online friends are real friends. Sometimes the fact that you spend time and effort invested in these social media arenas without tangible paybacks obscures the fact that you are getting something far more valuable: community and support.

Originally posted at Autism Unexpected on May 30, 2010.

DCMM: Code Red: School Isn’t Like It Used To Be

When I was a kid in elementary school, we had semi-frequent fire drills. The alarm would go off and we would all line up and file outside. We’d patiently wait until the principal told us we could go back inside and once we were back in our classrooms, she would let us know how fast (or slow) the school got outside safely. Because I grew up in an earthquake area, we’d also have earthquake drills when we would crouch under our desks until we got the all clear to come back up.

Kids these days have a whole different set of dangers to prepare for. Yes, they learn how to evacuate the school, but they also learn to prepare for the possibility of school invasion and dangers from people, not just nature.

I was in my second-grader’s classroom this morning, reading a book to my son and his classmates when the assistant principal’s voice came over the intercom telling us that we were in Code Blue. The teacher snapped into action, taping a black piece of paper over the window in the door and going through the instructions for what we should do during the Code Blue and what to do should it turn into a Code Red.

Having been to PTA meetings where these codes were discussed, I knew that a Code Blue means that there is something going on in the neighborhood that doesn’t directly affect the school or maybe the problem is that a teacher can’t find a student. A Code Red is called when there is a direct danger to the school.

When the Code Blue was called, my biggest concern was that I’d be trapped at the school past the time I was supposed to leave to pick up my preschooler.
I finished reading the book and then the assistant principal’s voice came back. Code Red. Hunker down.

The teacher and I closed all the blinds, turned out the lights, made sure the door was locked, and then sat in the dark with the kids lined up against the wall. No one spoke or moved, even when someone in the hall rattled the doorknob and pulled on the door.

I’m going to ease your tension right here by telling you that the Code Red was a drill. They were testing us. But, jeez, it was a little scary. The teacher did a good job of keeping the kids mellow and explaining the whole process before and after, but you could tell that they felt the tension. I have never seen a group of kids be so quiet so fast and so well.

The whole thing made me a little sad for this generation. Never once as a child did I have to prepare for a school invasion by locking doors, closing the blinds, turning out the lights and hiding against the wall.

Turns out that fires and earthquakes aren’t the scariest things after all.

Jean writes about her life at her personal blog, Stimeyland; runs an autism events website for Montgomery County, Maryland, at AutMont; and writes Autism Unexpected, a column in the Washington Times Communities. You can also find her as @Stimey on Twitter, where she would no doubt have been if the Code Red had been real.

I Don’t Get Anything Done Anymore

All I do is stare at the cute all day. The mice have settled in and are busy, busy, busy.

C’mon. Really. How does work compete with this?

I really should move them to my desk so I could at least pretend to do something while I’m watching them. These little rodents might just ruin my professional life. And drive all of my non-mouse loving blog readers away.

I know you’re all dying to see the fifth mouse, you know the one who refused to pose for me when I went on my first flurry of mouse photography the day we brought them home.

Meet Sam’s mouse, Poseidon:

She kinda looks like she’s been caught in and trying to avoid a spotlight, huh?

Sam did claim that he was going to change Poseidon’s name today to something that sounded a lot like “Fight—AY YAH WHIPWHOPKAPOW!!” But that’s not cool with me. She remains Poseidon. Although Poseidon may be too dignified a name for this particular mouse.

Poseidon had a piece of food on her head for THREE days!
And it wasn’t small either! It was a chicken wing!

Here’s something about mice—other than the cute—they kinda poop a lot and smell like mice. We got them Sunday and they already drove me to clean out their home today (Wednesday). And this is me we’re talking about here. I don’t clean anything. Honestly, the mouse house is cleaner than my house at this point.

Quinn was very eager to help me. The mice were less excited. And by “less excited,” I mean “freaked the fuck out.”

I stopped this immediately, of course.
After I took the picture.

After we cleaned out the mouse house, we spent probably an hour watching the mice. Quinn even ate his lunch there. See what I mean about getting nothing done?

See Scabbers up there in the green wheel? She had some problems getting down.
We had to rearrange the mouse house for her.

Here’s another thing. You know how all dogs are boys and all cats are girls? Well, evidently all mice are boys too. So even though we (hopefully, dear God, hopefully) have all girl mice, I will probably refer to them as “he” many, many times.

And yet another thing: I could drag this out over the next few posts, but I thought I would just get it all out of my system now and throw out some cute photos so I don’t feel the need to do it every day for the next month. There’s no need for y’all to lose the ability to work too. (You know, while you’re waiting for the photos to go up.)

Awwwwww….

Wait. Wait just a damn second. No, never mind. I just thought of and then dismissed the idea of a live mouse cam. No need to make you think I’m even crazier than I really am.

Look! They color coordinated themselves!

All of a sudden Poseidon is all comfortable and ready for her closeup.

Aren’t mice supposed to chew these up? ‘Cause mine don’t.

They love to climb the tiki hut. I fully expect to come into the room one day and find it entirely chewed to a nub.

That can’t be comfortable.

Run, Gerbil, run!

Gerbil is the only one who seems to like this wheel.

I got that blue wheel in addition to the solid-bottom one because the Petco mice do all kinds of funny stuff and tricks with each other on their wheels. Evidently independent pet store mice don’t.

I love this next one. Count the noses.

Yep, that’s all five of ‘em (and a fluff of paper) poking their faces out of there.

Well, that’s it for now. You’ll excuse me because I have to go do some work now. But first I just need to check on the mice to make sure they’re okay.

Okay. Good thing I did. I just wandered into the kitchen to find Alex doing something very irresponsible with a mouse, a cereal bowl, and a guilty look on his face. I’ll leave the rest up to your imagination.

My Poor Sick Child

Dear Sam’s teachers,

Sam was sick today, terribly sick, so he couldn’t come to school. He dearly wanted to, but just couldn’t lift his poor, achy head far enough off the pillow to make it in. Please send homework.

Love,
Stimey

p.s. You should go now. Let Sam rest.

******

Are they gone?

Really? Look behind you. Is that one of them crouching in the back? They’re really all gone?

******

So, Sam was “sick” today. He claimed he had a headache and that his stomach hurt. I could tell by looking at him that he really wasn’t all that ill, but the kid has had maybe one sick day so far this year and he is such a great student that I decided to let it slide and keep him home.

He came with Quinn and me when I dropped Quinn off at school. I had parent-teacher conferences with Quinn’s teacher, so Sam went out onto the playground with Quinn’s class first thing.

I showed up after they’d been outside for ten minutes and found my poor sickly boy doing this:

Big kids are fun!

and this:

Tell us what to do, Sam!

Of course, this brief respite didn’t stop him after we got home from actually saying to me, “Will you fetch me some water please?”

At least he said please.

He’ll be back at school tomorrow.

DCMM: Jumping the Computer Gap

I’m always hearing stories these days about how connected we all are online and how we spend too much time sitting at our computers. Stories like that first make me defensive (but my online community has done so much good!) and then they make me nod my head in recognition (yes, I suppose I do spend too much time on the computer), and finally make me think about how far computers and I have come in the past 20 or so years.

I got my first computer about two months before I headed off to grad school in 1996. (That is, if you don’t count the Atari 400 my family had as a child, and I’m not sure I do.) I had managed to get all the way through high school with a typewriter and all the way through college with a Brother word processor—which was often borrowed because it was so high tech and useful.

For a long time I was a Luddite when it came to computers. I thought they were lame and unnecessary. After all, my Brother could do anything I needed it to. So what if it took all night to “print” out long research papers with its typing mechanism? In my Berkeley college-age idealism I disliked computers, not just because I didn’t understand them (and I didn’t), but also because of the “computer gap”—meaning that computers and all their privileges were only available to the wealthy.

Then came my birthday before I headed off to grad school. My then-boyfriend/now-husband bought me a used Mac laptop. I was a changed person. I still felt bad about the computer gap, but now my glorified word processor let me play solitaire too. Not to mention that I had discovered the internet earlier that year, and while my new computer didn’t have Internet access, the boyfriend’s did.

I still remember the first time I searched for information online, for my grad school applications. I wanted to print it out and was amazed when the printer spit out what was on the screen, pictures and all. After all, I was the person who had to be reminded over and over again how to turn a computer on and off.

Within two years I had purchased another, better Mac—with color monitor!!—had learned how to code HTML, and had my own online presence with a hand-coded website all about ME! For better or for worse, I had jumped over that computer gap.

Twelve years later, I have two laptops and a desktop computer that is dying a slow death. I have an iPhone and my husband carries a Blackberry. I write five blogs and contribute to two more. We have multiple gaming systems, both console and hand-held. Even the picture frame that sits on my desk has a hard drive.

Yeah. My 22-year-old pre-computer self would hate me.

Looking past the embarrassment of riches that my family is lucky enough to have, I see how far my philosophy on computers has come. I still believe there is a computer gap and that it is more devastating than ever. But I am firmly entrenched on the privileged side of the chasm. The other day, the video card (or something) on my main laptop went kaput and I was destroyed. Before I took it into the computer store and got the good news that it was an easy fix, I was heartbroken.

All the things I used to do on paper—my job, my photographs, my to-do list, even quick notes to myself—I now do on my computer and they were suddenly inaccessible and I was at a complete loss. And this is with two one-and-a-half computers still available to me.

It is amazing to me the world that my children are growing up in. They will never know a world without computers. When they go to college, I wonder if they will learn how to comb through the stacks at different campus libraries to find the chapter of the book they need. I know that I need to be better at teaching my kids that all the answers don’t come from the magic box that lives on the desk.

I come from a family that didn’t have a microwave until I was in ninth grade and didn’t have an answering machine until even later, and yet three days without one of my computers threw me for such a loop that it kind of shook me. This world of technology, this world where utter dependence on computers and technology is so wide-spread and personal, well, some days it makes me marvel.

This is an original DC Metro Moms Blog post. Jean is fully aware of how ridiculously addicted to computers she is. Some examples of her intense interconnectivity are her main blog, Stimeyland; her autism events website for Montgomery County, AutMont; and her column about autism, Autism Unexpected.

Penguins + 20 Preschoolers = Tornado

Whew. Birthday party season is over at my house for a while. I repeat: whew.

Quinn, mid-sugar overload

I’m happy to say that even though it was too dreary and wet for the gajillion kids that were over to play outside much during Quinn’s party, they all had a good time anyway. I do have to say that I got a little panicky when I woke up this morning to a filthy house, an unplanned party, and a thunderstorm forecast.

See, Quinn wanted to invite his entire preschool class to his birthday party. That’s a lot of kids. The sheer number of children in his class precluded me from inviting some of my other birthday party staple kids, which was a little sad, but Quinn had a blast, which is the whole point anyway.

I threw pretty much the same party that I threw for Jack last week, but it had a whole different feel to it. While Jack’s party was kind of calm and slower paced, Quinn’s party was a whirling dervish of kids streaking through my house, consuming a lot of orange and brown junk food, and a lot of happy screeching.

Quinn’s official party theme was “penguins,” but I think the unofficial theme was, “AAAAAAAAAAHHHHHHH!!!!!!!!” I kind of still don’t know what happened. I just recall snippets of chaos.

We did manage to get in our traditional game of pin the something on the something. In this case it was fish onto a penguin beak. I’m pretty proud of the penguin I made. I modeled him off of a stuffed animal we gave Quinn for his birthday.

If you look closely, you can see remnants of last week’s piñata still on our deck outside.
I think Quinn might have cheated.

With all the crazy running around, I never thought that I would get all 20 or so kids lined up nicely to wait their turn to tape a piece of paper onto a wall in exchange for a plastic medal. But they all happily lined up and waited their turn. Kids are easy. And a total trip.

Because we were doing the piñata inside, we decided to use the ribbon pulls instead of a bat. I also liked the idea of the ribbons because it seemed sorta cruel and wrong to beat the crap out of this cute little guy:

I especially didn’t want to watch them beat it to death once it was already on the ground.

The only problem was that none of the strings seemed to be attached to the trap door that lets the candy out. So Alex took the thing, turned him on his side and broke him over his knee. It was a little gruesome.

This was before he took extra candy and started throwing it directly AT the children.

Poor Pablo the Penguin. Some of the kids took home pieces of limbs. One kid wandered out holding the head, still dangling from a string.

Here is Quinn using Pablo’s torso as a hat.

Much like with Jack’s party, it was difficult to find a suitable cake for Quinn. Even though there are Madagascar cakes, they are not penguin-centric, and Quinn did not want it. And unlike Jack’s cake, I imagine it’s a lot harder to fashion a penguin to stick on top of the thing.

So we got a soccer game cake. Obvious solution, right?

Needless to say, the mice took cover in their little house shortly after everyone began to arrive and didn’t come out until after everyone left. I imagine that they were all, “What the FUCK just happened here?” I also imagine that they have fond memories of their quiet little pet store.

Also needless to say, Quinn had such a great birthday weekend. He is one happy little kid.


And he’s five years old, if you can believe it. I can’t.

Operation: Mouse

You may all be aware that I kinda like little rodents. Turns out that the small, blond apple doesn’t fall far from the tree. Quinn loves them too. Every once in a while we’ll go to Petco and visit all the little animals. It’s like a trip to the zoo without all the walking.

Much as I always try to get Quinn to love the gerbils, he loves the mice more than anything. He will stand in front of their cage for as long as I will let him and he will giggle, giggle, giggle for the entire time.

I’d lost all hope of ever having rodents because Alex is a great big buzz kill. But somehow, Quinn’s enthusiasm got to him and he agreed that we could get some mice. Now, I know there is a segment of you that will be all, “MICE??!! What about the gerbils? For the love of God, they’re in your tagline!”

To you, I will simply ask that you revisit paragraph two above.

Well, today was Quinn’s birthday, which brings us to Operation: Mouse. We revealed to the children that we were going to buy them mice, but before we could go pick them up, we had to go to Jack’s social skills group, which was held at a park today. It went great until after group, when our kids hightailed it down to the little nearby creek. Jack waded in, sneakers and all, while Sam jumped in and promptly lost one flip flop. Afraid that we couldn’t take two barefoot children to the pet store, we searched and searched for the flip flop.

Alex was pissed. Also? We never found it.

I think you know Team Stimey well enough by now though to know that we don’t give up that easy. Jack wore wet shoes and Alex lent Sam his socks so it looked like he was wearing something on his feet. Then we headed on into the pet store.

We were greeted by an employee who looked like he was ten years old and who told us that he couldn’t tell the difference between boy mice and girl mice, which was a problem, because we do not want to be the eventual owners of 86 mice. Fortunately, we were rescued by another employee who could tell the difference, or at least could pretend to tell the difference.

Each of us picked out a mouse, including Alex, previously known as Mr. I Hate Anything Small, Cute, and Snuggly.

Meet the five newest members of Team Stimey.

When we got home, we spent, oh, I’d say about an hour watching the wee little ones explore their new home. Even Alex watched for a while.

It was his first glimpse of the tiki hut that convinced Alex that he wanted a mouse.

I don’t have an individual photo of Sam’s black curly-haired mouse. (When they first showed it to us, I was all, “Uh oh, this one has the mange,” and the lady said, “No, she just has curly fur.” I sure know how to make a good impression.) See, Poseidon, as she is named, is the scaredy-mouse of the group. I spent a long time today worried that she was dead because I hadn’t seen her for a long time. Turns out she was just hiding in the house under a whole lot of paper shavings.

Here is Jack’s mouse, Scabbers:

She has curly fur too.

Quinn’s mouse is the shiny, black one. Her name is Squeaky. Alex has the black and white one and named her Whiskers.

Squeaky seems to be the most energetic of the group thus far.

My mouse is gray and white. I named her Gerbil. For y’all.

Alex hates the name. I like it.

Gerbil is the piggiest of the group. Every time I see her, she’s rooting around in the food bowl. I think she’ll be happy here.

Prepare yourselves for some extensive mouse photography. Especially once I deem them settled in enough to to let my kids handle them. Then you can prepare yourselves for extensive photography of the ensuing mouse hunt after one of them gets away.

Also, please cross your fingers for me that these guys don’t go the way of the ants and the frogs. I really love them already.