The Road Less Traveled... Probably Because it's a Damn Minefield.

I should just stop telling you I'm going to post because you already know it's all a big lie. Look at it this way - the fact that I keep disappearing should actually make it a nice surprise when I do manage to post...


Annnnd I don't even know where to start with this. All of the business surrounding TPGA and the Dialogues, RRH's post about that terrible movie and the ensuing comments, blogs, articles, discussions, research, FB posts/arguments about Ricky Gervais being such an asshole... all of it, has had my head and heart reeling for weeks.

It's overwhelming.

Mostly because I'm left questioning everything I say, write, or do now, as it relates to Josh, his disability, disabilities in general, or even just basic human decency.

I find myself afraid to write or say anything because I'm sure I'll use the "wrong" words. Or I'll offend people because I'm talking about something I don't actually have first-hand knowledge of. Or I won't be as inclusive as I could be. Or people will be annoyed because they don't see the point in making something a big deal. Or maybe people just don't want to hear any of it.


Is it any wonder most of us do this alone? And when I say "us" I am referring to parents and/or other full-time care-givers of children who have disabilities... or are neuro-diverse to the point of needing extraordinary care; and by "this", I am referring to advocacy. Of any kind.

In the post I wrote about advocacy, I mentioned that being "single" was how most of us would see and engage in our advocacy. The vast majority of the battles we are faced with are very specific to our own child/children. But given what I've seen/read over the last several weeks, I think there's another reason - because there will always be someone, or even groups of people, who don't like what you're doing or how you're doing it. 

Even people you would think you should be working with.

And honestly? It's more effective to stand strong on your own than to constantly be torn-down within a group that can't come together enough to be a force.


I've written elsewhere about how powerful our words can be and that as writers, we need to take good care in their use. And I still believe that. However, they can also distract us. In much of what I have read and am still coming across regarding parent advocacy vs self-advocacy, this is the case in spades.

I can tell you that from what I've seen, even the language that I have used so far in this post would offend some people.

I did some searching recently, 'round our friend the Internet, to see what I could find about the language of disability. And I learned a great deal. But I also confirmed my suspicion. While there may be a lot of unhappiness over much of the language that is used by non-disabled people regarding those who are disabled, there is also no consensus on language that would be less offensive or simply more acceptable.

I read an interesting piece here in my travels recently - "ableist" being a word that was thrown around during the infamous Dialogues quite a lot, so I wanted to learn more. And while this piece isn't specifically about that word, it did demonstrate my point rather well, if you read through it then as always, the comments.

While it's clear that most, if not all, of the readers were also offended by the terms "special education" and "special needs", very few of them had anything to offer as alternatives with the exception of one or two, and there were those not on board with what was suggested.

I think the language issue drove itself home for me at one point a week or so ago. TPGA posted a link on FB to a picture from a meeting between parent-advocates and self-advocates. This was the same editor who was the driving force for the Dialogues and their most vehement supporter. The first comment on FB under the picture was from someone who wanted to point out that they didn't like the term "self advocate". This comment was made to the one person who has worked so hard to support that perspective all along... it was sad, really. I just had to shake my head and move on. The comment wasn't about the meeting, or anything that might have been supportive of what had happened. Nope. Language. Once again, the focus was off the story and on the words.

So where does that leave the rest of us?

It's almost enough to make you want to walk away and say fuck it.



Hi. I'm Sarah. My son Josh is autistic. Which means he also has autism. In his case, this also means he is disabled and quite significantly so. He may also be neuro-diverse, but his abilities to function on his own are severely impaired. Call that whatever you like, it doesn't matter to me, or to him. Don't believe me? ASK HIM. If you call him retarded, however, I will punch you in the face. Because that is a nasty, nasty word, don't argue with me about technical, literal definitions. We all know how and why that word is used. So don't.

He goes to school. In a self-contained Special Ed classroom. I don't know what else to call it. It's not a classroom for kids who do not have disabilities. The teachers are trained differently and teach differently. Should we call it "Different Education" ? I suspect not. It does need to be differentiated somehow. If the word "special" is offensive, then please come to some sort of agreement on something else. In the meantime, I'm probably just going to keep calling it Special Ed. I'm sorry.

I am not disabled myself. Does that make me "ableist"? Am I privileged? I don't honestly know. I know I want and need to take care of Josh to the best of my abilities. I also know that I have no desire nor intent to offend anyone else who is disabled in the process, but I suspect I will if language is going to muck us up. If you have a preference for something? Tell me. But don't insult and belittle me and my parenting skills in the process.

Do I advocate for Josh? Yes. Why? Because he's a child and his disability prevents him from having an effective, cognisant voice of his own. Can he self-advocate? Sure, but only to the extent that he can tell you what he wants to eat, which episode of Blue's Clues he wants to watch, or that he will not, under any circumstances, put on a new pair of shoes. He cannot and will not tell you why the cuts you want to make to the district's Special Education budget are dangerous and misguided. He is not going to stand up at a school board meeting where you were only given 2 minutes to talk - and speak for 9, against those cuts, where the Gen Ed parents all hated you because then money would have to be cut from THEIR kids' programs. He cannot and will not tell you that you had better get the staff you need in place in his classroom to make sure that he doesn't keep getting bitten...




or you're going to have a serious problem.



He cannot explain why you should not have kicked him out of the IMAX theater on his school field trip just because he needed his iPad on. He can't write you the letter that got you to examine your policies and make some changes so that doesn't happen to anyone else. 

So I do it.

Do I know what it's like to be Josh? Can I really speak from his perspective? No. I don't think I've ever thought of myself of speaking from his perspective, actually, I speak on his behalf and in support of what I know is important for him. Does that mean I can't really advocate for him? Should I not be speaking for him since I can't possibly understand exactly how Josh feels and thinks about things? Should I not be offended by the dehumanization of disabled people be it in the movies or a comedian's "jokes" because I myself am not disabled? You're kidding, right? Honestly, the fact that these even come up as arguments astounds me.

If it makes you (and by "you" I am referring to those that make these arguments, none of whom are likely reading my blog... ) feel better, as someone who has been sexually assaulted twice in my life, I do know what it's like to be dehumanized. Might not be in the same way, but dehumanized nonetheless. So can I be offended now? Am I part of the club? Can I speak out against stupid-ass movie makers and comedians without getting told to shut-up because I'm not actually disabled? Do I get a pass on that one?

Think I'm being ridiculous and extreme? I'm making a point in response to what seems to be a prevailing attitude.

Honestly, I don't care. Like I said, I'm not trying to offend anyone. But I will do what is right and in my son's best interests.

It would be great to be able to do it en masse. But if I have to go it alone because you have a problem with my not being disabled and you don't like the language I use? if you're too focused on those things to figure out how to move forward with me? I will.


I have friends on FB who don't understand why I would make a big deal about the Ricky Gervais business. They say, he's going to keep doing what he wants no matter what you do or say, so why bother calling attention to it? I'll tell you why. It's exactly that attitude I'm trying to change. Someone in the business of entertainment will ONLY continue doing something as long as he's still making money and selling tickets to shows, getting gigs, and good press. If that person starts to lose jobs, money, interviews, starts getting bad press because of something he or she is doing? I promise you that behavior will stop. The only way to make those things happen is to get the word out about why his "jokes" are unacceptable and dangerous. The more of us writing about it, talking about it, making a big damn deal out of it, the more likely it is that the press will get in on it and then the ball is rolling. Complacency gets you nowhere. Nobody making an issue out of it tells Ricky Gervais that his constant jokes about "mongs" (short for "mongoloids" or people with Down Syndrome) are ok. Am I just one small voice? Yup. But I'll keep speaking out about things like this because it's the right thing to do and, it's important for Josh. Notice I said for Josh, not to Josh. He doesn't understand enough to care. But he is still vulnerable.


So, I am going to put on my big-girl panties in my own non-disabled, parent-centric, offended by shit that's offensive, fuck-with-my-son-and-I'll-rip-your-face-off way, and I will keep it up.

Because I'm Toad's mom. That's my job.


And I'm ok with that. I don't need anyone else to be.

Oh Hey Blog, What's Up?

So, sorry for disappearing there, I didn't really mean to run away from the blog.

Real life is kind-of eating my face off right now so, sadly, writing is taking a back seat to preventing the vultures from plucking out my eyeballs. It's hard to concentrate. They're rather persistent.

ANYWAY, I do have some posts rolling around in my head so hopefully I'll be able to shoo the angry birds away for a bit this weekend to throw something up here. Not actually throw up, because that would be gross. Also, hard to edit.

I do have a little present for you, though.

Just got these back yesterday:





 Hi there, smiley Toad :)


His aide told me that the photographer was really great about taking a million shots to get a good one - it's exceptionally difficult to capture him smiling in pictures, even though he does smile a lot. Usually the school pics people will only take a couple of shots of each kid, but they made an exception for him and I am very glad they did.




Also? Zach just turned 15. Which can't be right. But I made enormous cupcakes anyway, in case this whole "I'm only 3 years away from 18" thing wasn't just a terrible, terrible hoax.







Sorry little man, you're not allowed to be 15 already.



That should work, right?






Thank You, Mr Jobs

Yes, this is just one more out of literally thousands of such posts, but I think that's really the bigger picture. The outpouring of genuine emotion at the passing of Steve Jobs, a man most of those saddened by the news of his death never even knew, is the testament to his legacy. At least, he touched many lives, at most, he changed them. Either way, his innovation, intuition and drive made the world a very different place for a great many people.

The day he died, someone I know on Facebook posted that they didn't understand what the big deal was, everybody dies, the world will go on, and, he wasn't even that great of a guy, so everybody should just get over it already.

Of course in the days since, there has been a lot of "Steve Jobs was a terrible person! Stop making him look like some sort of saint!"  "His accomplishments are not worth talking about because he was a jerk!" "I don't care how good he was at what he did, he didn't agree to give away half his money like these other guys, stop saying nice things about him!" and on and on, you get the idea.

Let me just speak to this a little, because apparently it's Rant Month here on Planet Josh, then I'll get on with my own story.

First, it IS a big deal that he is gone. Regardless of what you thought about him personally, his contributions to the world of publicly useable technology are undeniable. And many. Even if you don't actually use any Apple products, chances are whatever you're using instead was created in order to compete with the Apple item that came first. PC users stand-down - you do understand that the only reason you're not still forced to suffer with MS DOS is because Windows was created to make PC's more like, oh that's right, Macs... don't you?? If you didn't know that before, you do now. You're welcome.

And if you have no idea what MS DOS is? That means you're either too young or too new to personal computing to remember what it was like back in the dark days before Apple changed everything.

I'll explain that in a minute.

Basically, Apple's innovations have revolutionized the industry, not only with their own products, but the subsequent results of their competitors' efforts to keep-up with, or even improve upon them.

As for Steve Jobs the man? How easy it is for people to sit back and accuse and insult and pretend to have some sort of real knowledge or understanding when they can't possibly.

I initially had several more paragraphs of rant here, but I think I'd rather just let it be.

I will, however, leave you with this before I move on:

"Recognizing that his death marked the end of an era in the progress of civilization, countless individuals, communities, and corporations throughout the world dimmed their lights and, or, briefly turned off their electric power in his honor on the evening of the day he was laid to rest at his beautiful estate at Glenmont, New Jersey.  Most realized that, even though he was far from being a flawless human being and may not have really had the avuncular personality that was so often ascribed to him by myth makers, he was an essentially good man with a powerful mission....  Driven by a superhuman desire to fulfill the promise of research and invent things to serve mankind"

That is from a biography of Thomas Edison. Who by most accounts, was a douche-canoe* of a person. Yet I don't think anyone is really going to argue that that should negate the impact or significance of his work on our world.

It shouldn't be any different in this case. You cannot choose to ignore or diminish Steve Jobs' contributions, simply because you don't think he was a "nice guy".

 (*no, I don't personally think of SJ like this. But there seem to be many people out there who do. That's my point.)

OK. Now that I've got that out of the way...


My story.

 When I found out, sitting at my desk using my i-Mac, that Steve Jobs had passed away, I started to cry. And I cried for quite a while. This was a bit confusing and it kind of threw me - I didn't really understand why I was so sad. But I really was.

As I read all the tweets and Facebook statuses that started to flood the internet, it was clear I was not alone in this feeling I had.

That's because Steve Jobs either directly or indirectly, has had an impact on all of our lives. Like I said, even if you don't own an Apple product, you're using competitive products that wouldn't exist if Apple hadn't started down the path first.

 When I went to college back in the early-mid '80's, nobody had their own computer. Not even most of the engineering students I hung out with. Because at that time, they were still big, expensive, and not exactly user-friendly. And by that I mean, unless you were a Computer Science major, it sucked. They weren't really being made for mass use by the general public, though they were starting to show up in schools more and more. Yes, I did an entire 4 year degree without a computer. Suck-it, wimps. 

In January 1984, during the Super Bowl, this happened:

It only aired once on tv, during that Super Bowl, then it was shown in theaters with movie previews.

It gave me chills then and still does. It left a pretty significant impression (and, by the way, was the first iconic Super Bowl ad, the one that started it all. Steve Jobs' innovation wasn't limited to tech gadgetry... ). At the time I was still a freshman and a computer of my own wasn't something I wanted/needed.

Seven years later when I started grad school, it was.

Well, yes and no. I knew I needed one. But I didn't really want one. As in, I'd rather have put on my bathing suit and stood in a bed of fire-ants. I had been trying to use my dad's IBM and discovered quickly how insanely annoying MS DOS was. MS DOS = Microsoft Disk Operating System. This was before Windows was created. Essentially, it was an OS that required you type "commands" to do anything and everything. And by commands, I mean this kind of nightmare:





I don't know about you, but this makes me want to go after someone with a cheese grater.






So even though I knew I needed one, I truly hated computers. If I was going to do this, I needed something that was not going to make me stabby.

Then I remembered the ad. Never underestimate the power of a really. good. ad. SEVEN YEARS later, I remembered it and got myself to Ye Olde Giant Computer Store. Wherein I requested a Mac.

I fell in love with my computer within hours of getting it home. That was 20 years ago. I've owned nothing but Macs ever since.

So the girl who hated computers and just wanted something she could use to get through grad school without becoming homicidal with kitchen implements, became a complete and utter computer fanatic. You need to understand I'm not exaggerating - you know that old "if your house was on fire and you could only go in to save one thing, what would it be?" question? Well, assuming that the boys and the pets were safe, my answer would be and always has been "my computer". Period. No hesitation.

That first one I had was an LCii, which, according to those who are more qualified to judge than I, was a terrible Mac. But that's just it - even a bad Mac was 8 million times better than the alternative.

I taught myself to type on that first Mac. See, despite my being a bit of a girly-girl back in high school, that really only held true for my appearance what with the wearing of much pink and things that involved bows or ruffles (it's ok, I might have to go throw up too). While most of my friends were taking sewing (yes, they offered this as an elective in the old days) and typing, I took Mechanical Drawing. I even had my own T-square. But despite the awesomeness of that, I made it all the way to grad school without knowing how to type. Like, at all. But my thesis needed writing and I had this great computer that I wasn't afraid to use.

I got my thesis done in a year. On that first Mac.

Steve Jobs' vision was me. I was the person who needed/wanted a personal computer but found the IBM PC and everything like it, cumbersome and aneurysm-inducing.

I really don't believe that I would have had such an affinity for the internet if it hadn't been for the Mac. And the internet has been a pretty significant part of my life for almost 20 years now.

When I was pregnant with Zach and on bed-rest for 10 weeks? It was a welcome reprieve from Jerry Springer and MTV's Road Rules. Don't ask. When Josh was showing signs of autism before we had him diagnosed? I was on it. It gave me somewhere to go, to read, learn, question, answer. There was support. And that has continued throughout the years with him.

It's kept me in touch with people I otherwise would have lost track of. I've found old friends, and made new ones.

These wonderful machines and the 'net helped inspire me to write.

These days, it's how I keep track of the world - I read all my news online, I rarely watch tv at this point. I read, explore, learn, laugh, connect, write, investigate, give/receive support, all from my beloved Mac. Currently, it's an i-Mac. Actually, has been various incarnations of the i-Mac since Apple first introduced them.


Macs I have known...    












                                                               Yes, I owned a purple iMac.  :)












                                                                                   ... and I currently own one of these.




Of course there's the iPod, which has seen me through countless hours and thousands of miles on the treadmill. I'd probably weigh 750 lbs otherwise. You think I'm joking.

But the thing that makes me saddest, is that I will never be able to tell Steve Jobs personally, what a difference the iPad has made with Josh, and our family. I should have done so before he passed. So this is my regret. And I know that Toad isn't one of those kids who've made huge communication break-throughs with it, so you might be thinking, what's the big deal? You're right, he hasn't. Yet. There is always the possibility that with some more time and work, especially now that they are using one at school, that that will come. His language is progressing. It's very very slow, and most might not even see it. But it is.

So there is always the hope that the iPad will become more of an avenue for communicating some day. But that's not why it's so important or why I wish I'd written to Mr Jobs.

It's given Toadie some independence. An independence he's never had before. He's so reliant on others to do things for him and help him, that even entertainment or things to keep him focused or occupied always required someone else's involvement. Not any more. He can make what he wants to happen, happen, on the iPad, all by himself. He doesn't need me to do it for him. And because he can keep himself happy with it, we have so much more freedom to do things now that we never had before - he would have sat through an IMAX movie if the Science Center people hadn't kicked us out and now we know we can try it again if we want to. I would NEVER have attempted something like that before. He loves it, it has become an integral part of his world, and I love that he has at least some independence and the ability to keep himself happy. All I've ever wanted was for Toad to be, happy

My little boy does not go to sleep with a toy, or a blanket, or a stuffed animal. He goes to sleep every night with his iPad held close.

Something that has that much meaning to Josh, means everything to me.

The sadness, apart from the regret at not writing to him before he passed, is because for so long, his work has been there. Part of our lives, changing the way we do things, pushing the limits of innovation - we've happily bought iPhones, iPods, iPads, Macs, or their competitors, and never really thought about a future without the constant gifts we were being given.

Suddenly, that future is now.



Thank you, Mr Jobs. Our lives are better because of you. Wherever you are, I hope you know that.





RIP Steve Jobs

"Your time is limited, so don't waste it living someone else's life. Don't be trapped by dogma — which is living with the results of other people's thinking. Don't let the noise of others' opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary."



I am more sad than I can explain right now about his passing. But I do feel like I've lost a friend, which is really strange, considering I didn't know him personally. But if Twitter and Facebook are any indication, I am not alone in feeling this way. Says something about the man we just lost. 

Posted, very sadly but respectfully, from my iMac.