February 15, 2013

Bully: I Do Not Think It Means What You Think It Means

News Flash: There's a lot of drama on the Internet.

Chances are you've seen it somewhere. Maybe you commented on a friend's Facebook page about gun control, or Planned Parenthood or healthcare, only to find yourself the subject of insults or disproportionate rage. Maybe you were called "socialist!" because you supported Obama. Or you didn't breastfeed long enough, or dared to vaccinate your kid, or let him cry it out to sleep. If you were brave, you tried to defend yourself. If you were smart, you remembered that these people don't know you, laughed it off, and moved on.

It should be no surprise, then, that similar drama happens in the autism blogging sphere. Most people are blissfully unaware of this drama and I consider that to be a Good Thing. I try to keep it out of my blog because honestly, my mom or aunt or friend from summer camp doesn't care about that crap - they just want to know how Moe is doing. When I try to explain it to my husband it sounds like we're all a bunch of junior high school kids. And I do suppose we behave that way sometimes.

But we parents of kids with special needs (creatures of behavior that we humans are) have been conditioned to fight. We get defensive. Every day, out there, we fight for our kids' education, transportation to school and basic safety. We defend them to other parents who don't understand why our children are "misbehaving." We try to educate why it isn't okay to call our kids, or anyone, "retarded." We have to speak out all the time, for our children's very lives are at stake.

And we're writers too - not traditionally known as the most emotionally stable of populations.

So when we are insulted, sometimes unfairly and sometimes quite fairly, it is understandable why we are quick to react. And when those insults come from autistic adults, sometimes referred to as self-advocates, those insults cut a little deeper.

Autistic people have also learned to fight. I cannot speak for any autistic person of any age (except my own son when I need to). But some of the people I've encountered have suffered abuse by parents, teachers or other caregivers. Others were not abused but spend their whole lives fighting against the barrage of sensory and social demands of the world around them just to go about their day. Adults especially, may feel written off, left out of the conversation by everyone. And then we parents, who should be the closest of allies but who have become so used to speaking for our own children, forget that most autistics are people who can speak for themselves, thankyouverymuch.

I'd like to put it out there that I am a really nice person. I get along with people. In my job, I was that person who could walk the line between engineers and marketing people (the internet wars have nothing on that). I give people the benefit of the doubt.

I also like a good argument, and am not one to shy away from a debate. And so, sometimes, when I've been on the internet, I've made a "helpful" comment or two. And been slammed down pretty hard. One particular incident left me in tears. But I blog. I comment on blogs. I engage in facebook dialogue. It happens.

What's that saying? You walk around the dog park long enough, you're going to step in some shit. (That's not a saying? Well it should be...copyright 2013, Anybody Want A Peanut).

But recently, there has been a lot of nastiness. I and many of my friends have been called names. They've been called bullies (and worse). And that bothers me. Because bullying is serious. And while I can't say I've always behaved perfectly when tempers are flaring, I can say that I do my best not to make it personal. And, not surprisingly, some of the worst behavior - the actual bullying - is coming from those doing the worst of the name calling.

What does it mean to be a bully?

It does not mean:

  • Engaging in conversations in public forums.
  • Disagreeing in those conversations, even several times.
  • Being "unfair," no matter how infuriating. I engaged in a heated discussion in which I used someone's words back at them. I got my hand slapped; the other person didn't. It wasn't fair, I didn't like it, but it wasn't bullying. (I told you it's like junior high. But Mooom...she said a bad word tooooo.)
  • Saying something stupid or even inappropriate. You may deserve to be told that what you said was stupid and inappropriate but sometimes the way things sound in our heads come out all wrong on virtual paper.

It does mean:

  • Continuing to say inappropriate things over and over, even though you've been told those things are inappropriate. (On someone else's page. On your page, say whatever stupid crap you want as long as you're not harassing anyone.)
  • Sending private messages or emails with words like "you and your horrible troll friends."
  • Collaborating with others to systematically call out and defame individuals simply because you don't like who they are friends with.
  • Bringing private conversations into public forums or threatening to do so.

When you are reading a facebook page or a blog, and someone call out someone else, don't just jump on the bandwagon. It is fine to support your friends, but remember that you are only hearing one side of the story. Important pieces may be missing, since the owner of a blog or FB page can remove comments at will. (Also, don't like how someone is behaving on your page? Block and move on.) We all want to make ourselves look our best and have our delicate egos stroked. But don't engage in name calling just because your friends do. (Ugh. I can't believe I'm almost 40 and had to write that.)

And finally, a note to myself: if there is a facebook thread that is pissing you off, or a blog post that you disagree with, you don't have to respond. Sometimes, it is best to close the computer and walk away. Or make some pumpkin muffins, which is what I'm going to do now.

As always, respectful disagreement and helpful additions are welcome in the comments, but I will moderate comments I deem are inappropriate.

February 9, 2013

Choosing an AAC Device: Part 1

Note: I am a not an AAC expert, though we have worked with one along the way. If you think AAC will be useful for you, your child or someone you work with, find a Speech and Language Pathologist (SLP) who is experienced and knowledgeable about AAC.

Augmentative and Alternative Communication (AAC) is basically a catch-all term for any number of ways that people with speech or communication difficulties can use to communicate. This ranges from sign language, to picture exchange systems like PECS, to specialty talking devices.

Using AAC doesn't necessarily mean choosing only one thing. Like all of us, people with communication challenges may use a variety of ways to communicate. Moe, for example, uses a combination of ASL signs, gestures like pointing and nodding or shaking his head, and some word approximations.

But they key here is that Moe wants to communicate. Until now, we had never done any formal AAC programs with Moe because he never seemed to catch on. Maybe we didn't stick with it enough, or maybe we were still unsure how to proceed. But Moe is getting frustrated a lot lately. He is getting older and his needs are more complex. He needs a way to communicate with us consistently.

We decided we wanted to take a look at a "talker," a device that would allow Moe to have a voice to communicate with those of us who know Moe well, as well as others in the community who might not understand his signs or sounds.

Talkers come in two basic varieties: stand-alone devices and apps.


Several companies, including Saltillo and PRC make stand alone devices, although the state of this business is changing. In fact many devices, like the Springboard and Vantage, that were once staples in the AAC world just a year ago, have been discontinued. I suspect this is because it is much cheaper and easier to for a company to make an app for a tablet device than to manufacture and support custom hardware.

Example of a "stand-alone" device.
NOVA Chat 10 from Saltillo.
Today, most of these "stand alone devices" are modified Android tablets that have the communication app loaded onto them and are outfitted with a strong integrated case. Although the Saltillo rep claimed there is more to it than that - that the hardware itself has been altered as well - I suspect most of the hardware work is on the case.

There are several benefits to this kind of device. They tend to come with more support and training from the device company, and often are available in several form factors. Most are made by companies that have been in the AAC business for a long time, and the new devices are their next generation solutions. Companies will often allow 30 or 60 day trials with loaner devices as well.

These stand alone devices are very expensive, costing $3,000-$5,000 or more. However, it tends to be easier to get insurance coverage for the stand-alone devices.


There are many apps that can be purchased and loaded on iPads or Android devices. This approach seems to be where most of the action is these days. Custom hardware is complicated to make and expensive to support. By creating an app for sale in the Apple or Google store, AAC companies can reach many more customers and lose the overhead of device manufacturing.

For a user, there are several benefits to getting an app instead of a stand alone device. There are lots of apps to choose from, since the barrier to entry is much lower. Because of this competition, as well as the cheaper production cycle, the apps are less expensive than the stand alone devices, and bugs can be fixed and turned around relatively quickly. In fact, if all you need is a simple app, you may be able to find something inexpensive or even free. Many of the apps also have free "lite" versions that will allow you to see what the app is about before purchasing.

iPad loaded with LAMP Words for Life
The downsides are significant, however. Because there are many to choose from, it is harder to know which ones are from reputable companies that will be around to support their app, make updates or fix bugs. It is also harder to know how the apps really work as the lite versions are often not fully featured. App creators don't support the hardware, of course, and may not provide customer care beyond an email address or web form. And although cheaper than a device, the more robust apps still cost between $200-300. Add the cost of an iPad and high quality case (like the iAdapter), you could be approaching $1,000, and it is harder - though not impossible - to get insurance coverage for iPads used as communication devices.

Stay tuned for Part 2: An overview of the devices and apps we saw during Moe's AAC evaluation and what we selected.


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