And the most accurate assumption that can be made is that the likelihood of 2 given people with mobility impairments having identical weaknesses & strengths is extremely low, so assume that person X is NOT at all like your friend Y in what is easy and what is hard.

Anything else will make the one assuming look extremely ignorant (maybe even willfully so) sooner or later.

re, forward/backwards thing

I think doctors can fall into that trap also. A while ago, I had a temporary problem with my foot (entirely unrelated to an entirely separate chronic problem I have with the same foot, though most people have trouble processing that) called planchar fascia (sp?) — basically a heel inflamation problem that made it very painful to walk. We already had a pair of crutches on hand from some years back when my partner had a temporary injury of her own, so I started using the crutches for a while. Sure I *could* walk without them. The doctor even SAID so, and said I didn’t need the crutches. No, he didn’t insist that I give them up or anything, just said they weren’t necessary.

But using the crutches freed me enormously to go much further than I could bear to go without them. For someone like me who depends entirely on a combination of public transportation and my own two feet (with or without crutches or cane) to get around, that means a great deal. I couldn’t understand (and still don’t really get) why the foot doctor felt he had to say, “Oh, you don’t need to use crutches.” Planchar fascia is PAINFUL. I would think pretty much anyone with that problem (if severe enough) would want to consider crutches just for the flexibility it gives them. Though I suppose it’s different for people who drive and therefore have more built-in flexibility.

Re, the need to remind people that using augmented communication (or whatever) doesn’t mean that other skills (speaking, or whatever) will detoriate: absolutely agreed. Some parents prohibit deaf kids from learning to sign because of the same mistaken assumptions. And even some deaf people grow into adulthood refusing to learn sign, or at least refusing to use it for their own communication needs, for similar reasons: they think they’ll lose their speech and become “lazy”. But I sign (since age 3) and still speak and lipread well enough to use those in most one-on-one communication situations with most hearing people. So it makes perfect sense to ME that a hearing autistic person (or whoever) could continue to speak well part of the time even if they started to use augmented communication from time to time.

There may actually BE cases where someone stops (or mostly stops) speaking when they start alternate communication approaches. But if so, I would take that as a sign that speaking was putting MUCH more of a strain on them than others may have realized. If speaking is not only POSSIBLE for them but ALSO moderately easy at least some of the time, then they wouldn’t feel nearly so much temptation to stop just because other options start to open up too.

I generally find speaking easy enough that I don’t feel many temptations to stop (though I do drop it and pick up a pen instead in certain situations where I feel precision matters more, because I know my speech isn’t perfect). But it DOES take a constant, low-level effort of CONSCIOUS ATTENTION to how I move my jaw, my tongue, my lips etc, and constantly applying everything I learned in speech therapy from age 3 to age 18. And of course for many people it’s even more energy and effort. (Lipreading certainly takes more effort for me than speaking.) Why shouldn’t they stop if that energy could be better reserved for other things?

However, for someone with a different disability, it’s quite possible that the time and effort it takes to get to the back of the building and find the elevator is a lot less than to just head straight up the stairs. Or that going around to the ramped interest is easier than dealing with steps. It really depends on the physical capabilities, and the important thing is to remember that the guy who can barely use crutches isn’t going to turn into me if someone takes away his wheelchair, I’m not going to start walking normally if someone steals my crutches, someone who can accomplish a functional minimum of speech isn’t going to completely lose all capacity to speak, ever, if given an augmented communication device, and someone who types or writes or uses a communication board or whatever method is not going to develop functional speech if you take away methods of communication that work. It sounds obvious, but there are a lot of people who seems sincerely convinced that assistive devices destroy abilities.

Oh, and on the step forward-step backwards thing; I recently found out that a lot of people assume just by looking at me that day to day actions are constantly painful and exhausting (because my legs move oddly). This is not true. This is not remotely true. However, I did have a stretch a couple years back where I had to do without my crutches for a month. I could manage (work and back, shopping, some social activity) but every day I was tired and sore from walking unassisted all day. Not agony, but I went through more asprin that month than I usually do in a year. So when my crutches turned up, I was thrilled. But a great many people I knew were utterly dismayed that I was back to using the crutches. Apparently, they’d all assumed I’d experienced some radical improvement in my condition that enabled me to manage without them (where I’m actually just not inclined to live under a strain I can barely manage when there are better alternatives), and that those lovely bits of metal which meant I could go farther, do more, and have more energy were bad news.

There are some links for free symbols and photos. Check chilrenwithspecialneeds.com. Click the downloads section and follow the links. Files are in .pdf format, so should be printable from anything. There are a ton. See also http://trainland.tripod.com/pecs.htm. Scroll toward bottom of page for PECs files.

One thing you may look at with the comm device is trying switch access. There are switches now from Ablenet that are wireless. Switches are pretty study. You could set up a computer where he couldn’t get at it but could still see, and have access from the switches to scan and select. There are some really great software out there to teach people how to use switches. Again, see lburkhart.com for ideas, especially 2 switches for success.

Intellikeyboards are also pretty study, and come wireless now (see intellitools.com). You can make overlays for the keyboard to have symbols, pictures or letters on an overlay.

Dynavox (and I’m sure other voice output devices) also come with keyguarrds. The tango (ablenet) is also supposed to be pretty sturdy.

Most of the companies like dynavox will send someone out to do a training or help do an assessment.

PACER center, in MN, has a link for people selling used aug comm and other AT equipment. http://www.pacer.org/stc/super/

Check your state, there are some lending libraries where you can go in and try stuff out.

Also, with devices like dynavox or vanguard, you can use them to operate any device that has a remote control.

Have you tried a plexiglass like cover over the TV vcr area? Local sign shops probably have some thinner then plexiglass yet still thick enough not to allow access plastic. They’d probably give you a sheet, and help you cut it to size specifications.

Is there any way you can experiment with methods on your own at low cost? For example, if you wanted to experiment with pictoral cards or communication boards, could you print some appropriate off the web (if such are available somewhere) and try them out? Or if you wanted to find out if he can type, try sitting him down at your own computer? I know this wouldn’t be ideal, but I’m wondering if a little creativity and resourcefulness would help any.

Have you looked into facilitated communication at all? I’m not pushing for it (or against it). Some people swear by it, some say it’s a complete sham. From the very little I’ve read, I suspect it might be a mix of the two — ie, that it can be done correctly with someone who is appropriately trained, so that the autistic person really is able to express him/herself accurately by that approach at least some of the time; but that there are also times (or individual facilitators) when it’s not done correctly so that the “facilitator” is subconsciously influencing what the person types. And even apart from these issues, facilitation isn’t for everyone, in part simply because some are already able to type or otherwise communicate independently.

So if you did pursue this, I would suggest first looking carefully into what the “best practices” are in facilitated communication so you can at least steer away from the bad kind. Amanda has written a bit about facilitated communication in this blog (though she doesn’t normally use it herself … except, apparently, sometimes her cat will be her facilitator) — if you look at the categories at the left hand side of this page for “facilitated communication” maybe you can track down a few links to get you started. If that’s something you think you want to pursue.

Also, to what extent have you been networking with other parents, eg. via email discussion groups and so forth? In case other parents have needed to face similar obstacles, found ways to overcome them, and might have ideas?

Similar to how a given communication method may seem more cumbersome or less useful to an NT or a hearing person, but actually increases communication. Actually, to extend it further, it’s not that outsiders get the spectrum of “usefulness” wrong. It’s that the spectrum doesn’t exist. So while I prefer my wheelchair to using crutches, and use the crutches as a fall back, some people prefer their crutches and use a wheelchair as a fall back. To tie this to the communication analogy, I’m deaf; I prefer to speak, but I will finger spell or sign with my brother (or whoever can understand it!) when that’s not working. Similarly, there are people whose primary mode is sign (of whatever form) who will fall back to speech when all else fails. Presumably there’s an ASD equivalent here, but I’m not clued in enough to extend the comparison that far.

Re, communication devices — my thought had been that by starting with strangers and working out from there would give people a chance to decide on a case by case basis whether they have the nerve to try it with a particular individual or circle of people. I was kind of thinking along the lines of a gay person deciding whether to come out of the closet. “Coming out” for many, I think most gay people is on a continuum, where some people in their lives know, and some people in their lives never will, and the exact balance of who knows and who doesn’t, and how many are in each “camp” can shift over time, especially as they leave old acquantices and co-workers behind and meet new ones. And coming out also usually happens one person at a time, with the “safest” people first and the less “safe” people either last or not at all.

I think most commonly gay people either save the work place until the very last, after they have a strong support system in place (so if they run into problems, at least they know who they can count on for help). Or else they never come out at work at all. Probably precisely because it does tend to be the most “threatening” environment for being “different,” even if there supposedly are legal protections in place (such as the Americans with Disabilities Act).

So my thought was, not NECESSARILY that one eventually brings the communication device to the office (at least, not to an office where people already think you are a full-time speaker), but that “coming out of the closet” as a part-time augmented communication user SLOWLY, one person or circle of people at a time, would allow for time to develop, rehearse and keep revising a “script” for explaining the rationale for using the device to a person who hasn’t seen you use it before, and also for refining an overall strategy for the process. And it also allows for time for maybe the few closest friends or family members to see over repeated exposure how much benefit you get from the device. Then they could be a supportive “ally” if you move on to use the device with a few more people (especially if with mutual friends or relatives). It also allows for time to continually assess and re-assess how many people in your life you want to know, or not know.

Then, even if one never does bring it to the work place, one could at least move gradually toward a situation where they use the device with a certain circle of people, but continue speaking in other contexts. Then they could get at least some of the benefits, even if it’s not the ideal communication situation overall.

From my experience in coming out as bisexual, the first year or so tends to be the most intimidating (because you don’t really know yet how people will respond, so it’s harder to decide where to draw the boundaries, or whether you have the right strategy and script for “coming out” And at the very start you might have no, or a very small, support system in place for the coming out process).

(Though if you eventually found a job at a totally new workplace where no one ever knew you as a full time speaking person … ?)

I don’t know if this makes any more sense (or if it is any more helpful) than what I said before. Sorry if it isn’t :-(

But I do understand about being hesitant, perhaps ESPECIALLY at the office. I haven’t told ANYone at my office that I have attention deficit disorder, and I’ve been there for three years. Ditto (mostly) about me being bisexual.