I stumbled across an online store that sells printer toner and ink and then donates 5% of every sale to organizations that support research and issues related to autism. It goes by the straightforward name Toner for Autism.

There’s been some confusion in the autistiblogosphere (I made that up) about where their money goes, but by the accounts I’ve read, this store seems legit and the prices are certainly competitive. Given the personal stake one of the founders has in this since his daughter is autistic, there’s great promise here, and I appreciate their goal of raising at least $1 million.

With most anything like this, people are right to wonder what charities they might be supporting with their shopping. Their site didn’t seem particularly forthcoming with that information. So I thought I’d put this out there and see if anyone else knew.

I’ve taken a couple of days off (off by my standards at least) from the computer for mental health reasons. Once I get caught up, I’ll contact them and see. In the meantime, if anyone knows more about them or has bought from them, I’d love to hear your experience. I’d like to be able to recommend them, but always want to make sure and vet these things first.

Also, if you know of other businesses who donate percentages of sales to autism charities, we’d love to hear about them.

If you live in North Carolina (like we do), there’s a fantastic resource called Generations-Tadpole that a few people and a couple of therapists mentioned to me. We haven’t used it yet, but I’m sure we will.

The best way I can think of to describe them is like Netflix for assistive and augmentative technology. If you live in North Carolina, you can borrow something out of the ‘library’ for a couple of weeks, try it out, and then return it. The best news - unless I’m missing something (and I asked around and looked on their site) - is that for NC residents it doesn’t cost you a thing, not even for shipping. Of course, you actually have to return things on time.

Obviously, one of the main issues with assistive technology in general is that there’s no easy way to try it out without spending tons of money on something and likely being stuck with it if it doesn’t work for your child. This stuff is way expensive (makes me think I’m in the wrong line of work) and not something you try out on a whim usually. Our local Early Intervention office has a lending library of their own, which we’re going to try to use before our time in EI runs out soon. From what I gather, it gets a lot harder to get loaners from the preschool system just because their inventory is always checked out. At least that’s apparently the case in our county.

Our primary interest is in ‘augmentative communication’, or ways to help J-Man better communicate with us and others. They also have a bunch of other resources such as learning and literacy aids, devices to assist with daily living, loads of educational CDs and DVDs, computer software for kids, and more learning toys than you can shake a stick at. There’s a bunch of other stuff too.

After reviewing Tadpole’s inventory, I noticed one issue that our developmental therapist gave us a heads-up on - augmentative communication devices often talk for the child through pre-recorded phrases assigned to the buttons, so partially-verbal kids whose verbal skills are improving (even if very slowly) may derive little or no real benefit from these devices.

If an older child with a very limited spoken vocabulary needed to ask certain kinds of questions that they couldn’t sign or communicate non-verbally, provide certain responses to questions also not easily communicated non-verbally, or generally needed to interact in some fashion independently of someone who could ‘translate’, I could see the real value in this. If a child got lost and needed to say “My Mommy’s name is Jane. Her phone number is 555-3333,” then a programmable device like this could really help. Since some of them can also be reprogrammed or significantly customized, they are quite adaptable to different situations.

But that brings us back to the original problem. J-Man can point to a picture for a handful of things (mostly food), and often say something that approximates the name of that item while he’s touching the picture. This really helps clarify what he wants. The pictures are a stepping stone to expanded speech. They do stand in for the speech itself sometimes, but it feels like the available technology is largely on a different path right now from where we are. While it would be entertaining to get more complex things from him than ‘cup’ (just waiting for a recorded version of “Daddy, you smell like a baboon’s butt.”), it seems like digitized phrases aren’t yet a part of the path we’re on at the moment.

That said, the yes/no switches might be worth playing around with. I’m willing to play 20 Questions with him if it helps better narrow down what he wants (and assuming he gets the point of it), but I’m uncertain about how well that fits into our current plan. It’s free for us to try, so we’ll play around with their inventory to see what we see.

I think a gap in the range of these devices comes on the lower-tech end. A more portable, configurable, extensible picture system - without all the programmable recordings - would be a real benefit to us. I know a simple, small photo album works for some kids, but J-Man doesn’t seem ready to flip through something. He needs to see all of his choices at once. Given what I’ve seen, I may have to sit down and actually design one that works for him. It’ll give me an excuse to go to Lowe’s if nothing else.

If anyone knows of other lending resources, feel free to comment or e-mail us!

Recently we have been laminating fools over here in the Flashlight household. The J-man has really been into his alphabet flashcards, so we decided to laminate them before he completely shredded them. While we were at it, we (OK, Tim) laminated eleventy-seven pictures of things for the J-man to do. Some were therapy related (the desk, etc), and some were fun/reward kind of things (the swing, the computer game). Tim posted them on a piece of posterboard using velcro dots, just like we did with the food pictures. That posterboard is now hanging in the kitchen, right at the door to the classroom. We haven’t introduced it at all, though. We haven’t even pointed it out.

I was bustling around the kitchen cleaning up and making dinner, and the J-man was running around doing his thing, when he came up to me with the picture of the computer game in his hand. I’m not sure if he had been pointing at it before, but he made SURE I knew he wanted to play with it. What could I do but set him up to play? Besides, it let me cook dinner without worrying about him being near the stove. SCORE!

Estee over at The Joy of Autism blogged today about knowing her son knows much more than he can verbalize. Seeing the J-man carry over his knowledge about how the food board works to the actions board reinforced our belief that he knows SO MUCH MORE than he can say. If he’s anything like his daddy, he’s going to be crazy smart, and it looks like he’s heading in that direction.

Also… we cut his hair again tonight. It was not NEARLY as easy as the last time. Sigh. Poor monkey. He didn’t even want to be near me afterward. Talk about your Mama Guilt!

Given J-Man’s sudden proliferation of letter recognition and continued progress with picture communication, it looks like he may be a prime candidate for some sort of assistive technology device to help him communicate. While I’m a self-professed geek, I don’t know the first thing about what the technological possibilities are for him. I know a lot about designing web sites for people who use screen readers and otherwise creating accessible web sites, but I don’t know jack about what devices an almost-three-year-old could use to communicate.

Since his speech therapist seems to believe it’s likely he’ll have a hard time being understood for a long while even if he starts getting more words out, this is a path we need to consider.

So, this is where you come in. We’re looking for anything anyone knows about assistive technology for helping autistic toddlers communicate, or kids in general. Please leave a comment in this post or e-mail us privately and let us know your experience. We’d really appreciate it.

Here are some questions we have now. Obviously there’s stuff we haven’t thought of, so please feel free to stray from the questions and tell us everything you know.

• Have any of you used any sort of assistive technology devices to help your kids communicate? If so, what devices and how well did they work?
• Do you know of any good web sites that provide helpful and accurate info about this? (I looked up some stuff on Google real quick and the sites were either marginally informative or just broken links.)
• I have heard that it’s a requirement that assistive technology be discussed during the IEP process and a determination made about whether it’s appropriate for your child. If that’s correct, has anyone gotten their schools to cover this? If so, how hard was it? Did they approve something that was the equivalent of a 20-year-old laptop and you have to pay out of pocket for something that worked well?
• What’s a good way to get ‘loaners’ and try this stuff out before money gets shelled out for it?

Really, just tell us anything you know. We’d be most grateful. Thanks!

As we develop this hybrid of therapy work for us to do at home in between J-Man’s work with his therapists and his time at school, we have been drawing a big blank on one critically important piece of the puzzle. I call it ‘reward pellets’.

The concept comes basically from how they train animals. They do something right, they get some sort of reward. Often, it’s a food pellet.

This may sound completely silly in a conversation about autistic kids, but it’s an important part of the structure and motivational processes needed to keep moving forward. The more you talk about this stuff, the more it sounds like training a schnauzer. But, it is what it is, and you get over it eventually.

If you have an autistic child, this probably isn’t news to you. In certain instances, if your child completes a new task, responds to your question, names an object for the first time, or something along those lines, you’ll give them a special treat or reward of some kind. We tend not to do this quite as often as some therapies lean toward, but we do have “you’ve worked hard, you’ve earned X” as part of the equation.

As part of the home classroom work we’re devising, we’re coming up with a system of ‘picture scheduling’, a way of using visual cues of some sort to illustrate how we’re going to sequence something, whether it be daily activities or the classroom tasks we’ll be doing for that ’session’.

For example, on his desk, we now have three (or four for lengthier sessions) colored shapes (red heart, green square, blue circle, plus yellow star for the fourth) in a row across the top of the desk. Next to him (on his left) is a bookshelf with three (or four) open-top plastic bins with those same shapes in the same order.

Our goal will be to get him to remove the first shape from his desk (red heart) and match it with (stick it on) the red heart on the bin (it’ll stick on with the velcro), do the activity in the bin, put it back in the bin, put the whole thing in the ‘done basket’ (a large clothes basket on the floor), then move on to the next shape and activity, and so on until we’re done.

[I'll get around to posting a picture of this soon.]

Here’s the missing link. At the end of the row of shapes is (or should be in our case) a picture of the ‘reward’ (also known as a ‘reinforcer’ or ‘reinforcing object’ I think). For some kids it might be a picture of an M&M or a favorite toy or something. The idea is that it should be something special and not otherwise part of the classroom routine.

Our main problem? J-Man isn’t really attached to any toy, food, or anything else for that matter. He’s really attached to us, but it’s not like we’re going to reserve hugs for rewards or something.

Our partial solution is to use pictures of his favorite TV shows. When he completes all the tasks, he gets five minutes of a show. This means we have to cue up the DVR to the right place beforehand so that it will just show five minutes and not abruptly end mid-show. Easy enough, though. The hope is that this whole cycle will take about 15 minutes - 10 for the activities and 5 for the ‘reward’ - with the goal of completing four cycles in a row (or an hour total, however that works out). I’m not real jazzed about using TV for this purpose, but we’ve been low on options.

If the end of those activities mean the end of the classroom time for a while (i.e., we’re off for a couple of hours), the picture could be of his swing set, which is NOT something we could do for five minutes without inciting a riot. Plus it’s getting so hot that our ability to use it will get limited soon.

That brings us to our latest discovery, which may very well be the reward we were looking for.

Going on the “keyboards are the best things since cheese toast” revelation, we discovered the LeapFrog ClickStart My First Computer. It’s a regular QWERTY keyboard like ours (he would have noticed if it wasn’t) and the games included on the console can be simplified enough that all he really has to do is sit there and type. Letters appear, it names letters out loud, and generally fun things happen. We think it’s cute.

He thinks it’s so great he’s almost beside himself.

Yay!

To make sure he doesn’t just use it to zone out, we sit there and ask him to type a particular letter (he may or may not), encourage him to try various parts of the keyboard (he’s pretty fixated on ‘K’ because he recognizes it and he can say it), and generally be there to be interactive. He also was getting very excited, which results in lots of hand flapping and general overload, so we’re there to do the normal stuff we do to help him stay centered (deep pressure, massage, singing, etc.)

The obvious question is, if it makes him do that and you have to center him, why do it? Mostly because his best learning takes place in a certain zone (we call it the ’sweet spot’) where he’s not too over or under-stimulated. Under-stimulation is just as stifling to his ability to do anything as the overload is. He can zone out or get overloaded in just about any activity. The ones he’s really excited about do make it hard for him to settle down, but that’s part of the process of things he needs to learn. By being there and being interactive (and not letting him drop out or go into his own world with it), we turn it into a quality activity.

Anyway, looks like Leap Frog has provided our ‘reward pellet’ for now.

Question for the masses, particularly those whose kids are attached to very few things - how do you handle the reward thing?

OK, I’ve heard a lot recently about non or barely verbal autistic children being able to type and communicate like gangbusters. Typically this is for older children, though.

When you start seeing your own speech-struggling, not-terribly-receptive-to-word-games toddler identifying letters on a computer keyboard, that’ll freak you out, in a good way of course.

J-Man LOVES computer keyboards. He doesn’t bang on them at all, just thoughtfully presses keys here and there. I occasionally hand him one from our pile of surplus keyboards, but it doesn’t interest him as much unless it’s attached to a computer he can ‘accidentally’ reboot or delete files from…

In any case, he stood in front of Mary’s laptop and started playing around with the keyboard. Here’s the I’m-not-making-this-up summary.

M: Where’s the ‘K’?
J: (after a few seconds, presses the ‘K’ several times)
M: That’s right! ‘K’!
J: Kay-kay.

M: Where’s the ‘U’?
J: (hunts thoughtfully for about 15 seconds, then presses the ‘U’ many times)
M: That’s right! ‘U’!
J: (something like) uh-ooo!

[Daddy is currently scraping his jaw off the floor.]

[Crowd thinks, surely not another?!]

M: Where’s the ‘Y’?
J: (hunts thoughtfully for a few seconds, then presses the ‘Y’ a few times)
M: That’s right! ‘Y’!
J: (tries to say something like ‘Y’)

We repeat this for ‘M’ too, and after that he says ‘muh-muh’, at which time I’m simultaneously freaked out and dumbfounded and especially proud.

Maybe we should go get him one of those toddler computer-y things that talks back when you press a letter.

Dude. I don’t know what to do with this one yet. Well, except say “Yay!”