AAC Awareness: I Am Not A Mindreader (And Neither Are You)

Are you (or your child's team) hesitating to commit to AAC because:

• "he has some words and signs and I can basically understand him most of the time"
• "he prefers to use his voice and gestures to get across what he's trying to say"
• "I spend so much time with her, I can tell what she's going to say in different situations"

Well, I've got some news that you aren't going to like, especially if you're the mom/dad of a child who can't speak . . . you are not a mindreader. No, you don't know what they're trying to say. Surely, you do some of the time, but the rest of the time . . . well, no. And, by guessing what your child wants to say you are likely assuming it's something simple (vocalizing and pointing at a toy becomes "I want that toy" instead of "I saw that toy at school today!") responding to them in a simple way that doesn't encourage higher level thinking or increased communication (giving them the toy vs. saying "Toy school? Are you telling me this toy was at school? Wow! Whose room did you see it in?") and getting stuck in a low-expectation, low-production loop. 

Plus, how annoying would it be if every time you pointed to an object to talk about it the default response was "Oh, you want that? Here you go."

This week's Throw Back Thursday post uses a concrete example about a school bus and an excited little girl and illustrates how easily (and seemingly correctly) I could predict what she was thinking/trying to say . . . . and then over a dozen ways that I could be wrong.

I Am Not A Mindreader (And Neither Are You)

   

This Shouldn't Even Be Their Choice

                                      knee scooter                         comprehensive AAC app

Imagine this: you've had an accident, and one of your legs was badly injured. You endure a period of rest and immobility, and then the time comes for you to get back on your feet---but you can’t. The weakness, the pain, the coordination issues . . . that leg is just not ready to do its job quite yet. You meet with a physical therapist and a doctor and discuss different tools that can aid your mobility, and you ask about the one-legged scooter that you have researched diligently online---it will take the weight off of your bad leg and allow you to move quickly, keeping up with everyone in many environments (let’s pretend you live in a fully ramp-accessible world for this imaginary scenario). You have been waiting for a long time to get off the sidelines and are eager to get the scooter, which can help you get around until you have your strength.

Imagine this: You are a child who has no speech, or very limited speech. You are frustrated (or rage-y, or sad, or dejected, or deflated) when you want things, or feel things, or want to comment on things, or have a question about something, or want to boss someone around, or need to get someone’s attention, or have something really funny to say . . . because no one understands. Or some people understand sometimes but then other times they are wrong and it’s not-really-even-worth-telling-them-they’re-wrong-because-you-can’t-figure-out-how-to-tell-them-the-right-thing-anyway. You meet with a speech therapist and a teacher and they sometimes are very fun but sometimes it’s all just hard work. Your mom comes to talk with them, and you hear them talking about something, some device, that will help you talk to people. You’ve been waiting for a long time to get off the sidelines and you need a way to communicate, effectively, with as little effort as possible, until you have the means to communicate with speech.

But then, something strange happens. They decide that you shouldn’t get the scooter just yet.

But then, something strange happens. They decide that you shouldn’t get a device to help you communicate just yet.

First, they aren’t sure that you can even use a scooter . . . they’ve never seen you even show an interest in scooting. They say that the scooter is so fast and effective that you may just lose interest in ever trying to walk independently. They think that you may just perseverate on the fun of wheeled scooter, spinning in circles, being totally irresponsible as you speed aimlessly around, never bothering to actually wheel yourself where you are supposed to go.  They think that the wheeled scooter is very complex, what with the moving pieces and the brakes and the features that need to be learned . . . and based on your previous interactions with them, they aren’t sure that you’re capable of managing it.

They think that first you have to prove that you’re capable of managing something without wheels, to work up the mobility hierarchy. It is determined that you will start with a cane-if you are successful you may graduate to two canes, then to crutches, then to a wheeled office chair (to be used only when you’re seated in your office, possibly to be expanded to home use if you are successful), then to the wheeled scooter. The wheeled scooter is a very good option for those who have mastered the other mobility options, but they don’t want to overwhelm you with too much speed and freedom. They’ve always given the cane first.

First, they aren’t even sure that you can use a speech generating device, or whether you would be interested. They say that an SGD is so stimulating and fun that you may just lose interest in even trying to speak with your voice. They think that you might just stim on the pictures and buttons and sounds of the device, hitting button after button and never bothering to learn how to actually communicate with it. They think that a full-bodied AAC device/app is too big: too many words, too many options, too much navigation . . . and based on what they’ve seen from you, they aren’t sure that you’re capable of managing it.

They think that first you have to prove that you’re capable of managing something no- or low-tech. It is determined that you will start with a low tech device with a field of 6 choices (to be determined by an adult who will pick the things that they want you to “say”). If you can manage a field of 6 it will increase to 12, then maybe to 32, and then (if you stay focused for a few months) possibly to something with a dynamic screen and more reasonable vocabulary size (to be used only at school during snack time initially, then also in circle time, and possibly to be expanded to home use if you are successful). The dynamic screens of AAC apps/devices are great options for those who have proven their capabilities, but they don’t want to overwhelm you with something too complicated from the start. They always give low tech first.

This doesn’t seem fair.

This doesn’t seem fair.

There are clear counterpoints to each point raised by the treatment team. First, it’s ludicrous to assume that you would prefer to scoot perpetually—managing the equipment, not being able to move with your peers as they cross uneven terrain, having to haul the scooter everywhere you go---the scooter is more work, and less ideal, than natural locomotion.  Next, you may spin some wheelies or race around as you get a feel for the scooter, but this is part of the process of learning how to navigate on wheels. Third, while the mechanics and maintenance of the scooter will take some getting used to, there’s no way of knowing if you can do it without trying (but you’re pretty sure you can do it). Lastly . . .  a mobility hierarchy? Really? Why in the world should you waste your time and energy painfully proving yourself on things-that-really-won’t-work-long-term, when you could already have the long term solution in hand? (or, in this case, under leg)

There are clear counterpoints to each point raised by the treatment team. First, it’s ludicrous to assume that you would prefer using a talker to speaking**-managing the talker, not being heard easily in crowded places, having to carry it everywhere you go---the device is more work, so much slower,  and less ideal than natural speech.  Next, you may press a lot of buttons to learn where words are located, but this is part of the process of learning how to navigate a speech generating device. (And even “stimming” on one word over and over is often a way of self-teaching that word and the melody of it.)  Third, while the navigation, transporting, and usage of the talker will take some getting used to, there’s no way of knowing if you can do it without trying (but you probably can do it, with the right modeling and support in your corner).  Lastly . . .  an AAC hierarchy? Really? Why in the world should you waste your time and energy painfully proving yourself on things-that-really-won’t-work-long-term, when you could already have the long term solution in hand?

Being able to navigate in your world seems like a basic human right. You are entitled to the tool you need to make this happen.

Being able to communicate is, indeed, a basic human right. You are entitled to the tool you need to make this happen. 


You tell the therapy team that their proposed course of action is invalid, for the reasons outlined above. You advocate for yourself and insist on getting the tool that you need. This shouldn’t even be their decision. You are the one who is dealing with this limitation, and your vote counts the most.

You don’t say anything. Because you can’t.

This shouldn’t even be their decision. You are the one who is dealing with this limitation, and your vote counts the most.

Except you don’t get a vote.

Every child who can’t speak deserves access to a full, robust, comprehensive communication system. If you have one of these children in your life*, you’re either on the team that is presuming competence and fighting for a big system (immediately), or you’re on the team that is standing in the way. 

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*Please note that I included the parent in the treatment team of the nonspeaking child. This isn't accidental. Sometimes the roadblock to a great device is a professional-but sometimes it's the parent who is hesitating.

**PS: And honestly, so what if an AAC user prefers using their device to speaking? There are reasons that AAC use is a better option for some verbal users sometimes (particularly in times of stress or exhaustion). Why should it matter how they choose to communicate, as long as they have the ability to do so?

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Related post:  The Gatekeepers, in which I discuss the AT evaluator that tried, twice to underserve Maya---the first time providing her with a low tech 32 button system, the second time trying to take her communication app away and replace it with something "simpler."

  

The Merits of AAC Exploration

In recent months, AAC has not been my focus.

If you're gasping dramatically, chances are that you're one of our SLP/AAC friends, and if you're thinking "Oh thank goodness I'm not the only one who drops the ball," then chances are that you're living in an AAC family.

We haven't been focused on AAC because . . . well, because life. I've taken two (accelerated summer) classes in the past two months, Maya has started at a new school with a new staff, Dave has been on vacation, and the priority list just shifted all around. The talkers are always around, always accessible, and used a good amount, but I haven't really been teaching or modeling with any real level of commitment.

I've got grand plans (actually, really vague ones that mostly involve just a lot of modeling and some targeted vocabulary selection) at doing some AAC immersion for the next few weeks. Maya's summer school session ended today, Dave went back to work on Friday, and I'm going to be home with both kids until September. Add in the fact that I've got an injured foot (with a boot) and I'll have plenty of parked-at-home time, perfect for aided language input (aka "modeling", or pushing buttons on a device to show the AAC user how to use it conversationally, where to find words you're targeting, etc).

But this post isn't actually about modeling. Or teaching. Or aiding language development. It's about leaving kids alone and letting them explore their devices.

Will, now 22 months old, hasn't gotten a ton of modeling on his talker (for the reasons mentioned above). What he has gotten is (mostly) unlimited access to it. He insists on having it in his crib when he goes to bed for the night, and every morning I know he's awake when I hear the talker through the monitor. I have no idea what he's talking about most days, and a cynic would undoubtedly hear the disjointed words or repetitive again-again-again-again-no-no-no-no and say "he's stimming! he's just hitting random things!" . . . but they would be wrong.

By having unstructured time to explore his talker, without scrutiny or stress or goals, Will has the ability to play with it in whatever way he chooses. He can push the buttons at the top to learn about fucntions of the app. He can linger on favorite screens and study the little pictures. He can pop in and out of secondary pages and learn the location of words. He can find words that he loves the sound of (he really loves again) and "say" them over and over and over again. And his connection to his device grows, because he's enjoying it on his own terms---it's not a tool that he's being forced into using, it's a really interesting and powerful (and FUN) thing that he gets to use however he wants.

Two morning ago I sat with Will (who still looks a little sleepy in his pajamas, is sporting a few good bug bites on his head, and is clutching my cell phone in one hand and intermittently gnawing on the other because he's cutting teeth) and turned on the video camera. My goal was just to see what he would choose to do or say if we were both focused on the talker (the fancy speech therapy term for that is joint attention), but I didn't direct any sort of activity. I wanted him to take the lead, and I just wanted some baseline video . . . but I was actually surprised by what I saw. In his free exploration time, it turns out that Will has taught himself a lot of things about how to work the features of his app (Speak for Yourself). I've highlighted things as they happen in the video, but here's a list of what he does: uses the home key to return to the previous page, opens and closes the keyboard, clears the sentence strip, opens the search feature, types and activates the search feature, scrolls through a list terms. 

I didn't teach him any of this. And that's not to say that he's a baby genius, it's to say that he's a kid who has had a wealth of unstructured time (that's a nice way of saying that he's a second child and sometimes left to his own devices) with a talker . . . which has a lot of merits.

I wanted to share this because I think it really highlights the type of learning (and ownership of a device) that can only happen when kids have time to explore. ( And without sounding too salespitch-y, the babble and search features of Speak for Yourself make this type of learning really easily accessible to users, even users who are really young.) 

PS: For families out there who might be watching this and hoping to get ideas for modeling, this is not the video for that. I'm not doing a good job of modeling, because my goal was to get a baseline video of his AAC use before I really start active modeling over the next few weeks. I join in a few times (because I can't resist, and because it renews his focus when he sees me interact with the talker) but I'm not really focused on anything specific.

PPS: At the end when he says "Oh no See" he's pointing out that I paused his show, "Sid the Science Kid."

No One Knows The Words A Child Cannot Say

The disability world has its fair share of inspirational quotes. Some are actually inspiring, some are trite, and  a few are downright dangerous. The quote below (popular among some mothers of nonverbal children) falls solidly into the dangerous category.

"A mother knows the words her child cannot say."

First, this is inaccurate. While I wish that I knew the words my children could not say, that's just impossible. Come over any day this week and watch my almost-two-year-old rage against my ignorance by tantrumming loudly on the floor when I hand him the not-the-one-he-was-thinking-of toy from the too-tall-to-reach shelf. He'll be happy to point out that parents are not always accurate mindreaders. And he's only two. If I can't even predict which toy he wants when he's pointing and whining, how could I possibly predict the complex (and sometimes random) thoughts of my 6 year old, who has very limited speech? 

But more than inaccurate, there is a danger in quotes like this. This says "Mom, you've got this. Be secure in knowing that your connection to your child is stronger than language. You know what s/he can't say. Don't worry." But, well, that's clearly not true. I'm not a mindreader, and neither are you. And by sharing and promoting images like this one, we are (unintentionally, of course) spreading the idea that a) the child's thoughts are simple enough to be consistently accurately predicted and b) we shouldn't be (doggedly, enthusiastically, urgently) pursuing some sort of AAC that can provide them with a way to say exactly what they want to say, all of the time, to anyone.

So if this isn't an ideal image to share, what would be? I have a few ideas:

This is a bit more accurate:

Because it's not just about moms:

Because 80s rap enhances any meme:

In case you're not familiar with 80s rap:

This is certainly true for me:

And to include dads, too: 

And here's one if you're a really big fan of details:

For the dads, too:

And guess what, SLPs? While researching this post, I also stumbled across this dangerous saying, targeted at you and yours:

Don't worry---I made a new one for you, too:

Because the bottom line is this:

There. Much better.

Edited to add: The Facebook album of these memes also contains several others: for friends, teachers, therapists, SLPs, caregivers, ones that say "mum", and few others. 

These will be up in an album on our Facebook page, and also have their own board on Pinterest.

An iPad case that's toddler-proof

Disclaimer(ish): The folks at Gripcase emailed me to see if I was interested in trying out their case and writing a review. Their timing couldn't have been better, as Will was starting to use our full-sized iPad and I didn't love our current case. This was the first time I've ever accepted a "would you like to try and review" offer, because I don't want to be advertise-y, and I'm not interested in trying a lot of things anyway. (Who has the time to try a lot of things?) But I had been intrigued by the GripCase since I saw Ellen's review (over at Love That Max) last year, so I thought, well why not. Turns out, I really like this case. I wasn't compensated for this review or my opinion, but I was provided with the case, their stand, and their carrying strap. 

NOTE: This case was to be trialed on our iPad2 . . . formerly known as our "play iPad", now turned into Will's talker. Maya's talker remains housed in the amplified mini iAdapter, as I believe that dedicated AAC devices must have amplification (and the iAdapter is currently the only solidly amplified case). 

When the Gripcase arrived, I was skeptical.

front

back

I couldn't find the instructions on how to install the iPad into the case, and then I realized that, quite simply, you just slide it in. So I did. And I thought "I never should have agreed to review this thing, because it feels like it is made of air and my iPad will surely be destroyed within the first hour of putting it on."  Remember now, this is an iPad2, our "play" iPad that had become Will's talker iPad. So the primary user of this device is an 18 month old boy. He literally does not understand the meaning of the word gentle.

But he couldn't wait to get his hands on it. 

Or, rather, one hand, as the other was used for clutching of his little monkey.

And then he realized that it was light enough to run around with, and the handles made the running-and-carrying easy.

Then he took a break because he had important things to talk about.

And the next morning we tried out using it with the stand:

That's also when he realized that if Mommy is trying to take the iPad away, say, to take a picture of it, the handles are really great for tug-of-war:

In the past we have used the following cases: the Otterbox Defender, the Griffin Survivor, the Gumdrop, the iAdapter and the iAdapter mini. As mentioned above, if you're using an iPad (or iPad mini) as a dedicated communication device, I recommend the iAdapter line. If you're using an iPad with kids for other reasons (or you're saving up for an iAdapter) then I think the Gripcase beats the other three mentioned above, easily. (We had used the Griffin Survivor on our iPad for the past 2 years, but we're sticking with the Gripcase now.) Here's why:

Pros:

Weight: The Otterbox and Griffin are super-protective, but super heavy. Like, really heavy. The Gripcase is amazingly light. It's made of some foamy/rubbery material that feels like nothing. I was tempted to throw it like a frisbee (it would have gone far, but I am an awful frisbee thrower).

hang-on-the-plastic-stroller-clip light

Handles: Those three other cases do not have handles. I didn't think about it before I saw it in action, but handle really (really) decreases the drop-ability of an iPad. Will can (and does) run around here at full speed while carrying the iPad behind him with one hand, and he rarely drops it . . . 

Durability: . . . except when he drops it. Most famously, he will tuck the iPad between his car seat and the car door so that when I open the door to take him out . . . bam. Right to the ground, from SUV car seat height. It's happened an embarrassing number of times, along with a few falls from the couch, a few angry throws, and some general clumsiness. Also, he likes to stand on it. And, amazingly, not a scratch. When the iPad lands vertically (as in, the handles hit the floor) it bounces (really). And when it hits horizontally, it tends to land face down (which sounds bad, but it's got a concave shape so that the screen is held up off of the floor). 

The Stand: It's sold separately, but it's really good. The Griffin stand snapped from us pushing the buttons on the communication app. This one is lightweight and really good. The only issue is that it doesn't fold or anything, so it might be a little bulky for travel. Small price to pay if you've gone through multiple flimsy stands, though.

It's difficult to see, but the screen is actually lifted up off of the table here.

Cons:

Screen protection: I bought a adhesive screen protector and put it on the iPad, because there's no component that covers the screen with this case. The Griffin Survivor has a hard plastic covering over the screen, but is lacking in the "pros" mentioned above. 

Size?: I mention this because I was initially startled at how much bigger it seemed than the other cases. However, it still fits in a (standard size LL Bean) backpack and doesn't seem big anymore, but there was definitely a moment of surprise.

Amplification: I mentioned it above. For a dedicated device, you really need amplification. That being said, this case is definitely louder than the Otterbox, Griffin, or Gumdrop cases because they have a little cut-out so that the speaker isn't covered. 

That's about it.

They sent us a carrying strap, which connects to the case in a really interesting novel way. This is what it looks like when attached. We generally keep the strap off, as Will is very short. 

Also of interest: they have a "Buy One Give One" program in which they will donate a Gripcase to a school of your choice for every case that you buy. If you're buying for a school district, this would come in particularly handy.

Of all the cases we have on hand, our iPad is going to stay in the Gripcase, which is basically the biggest endorsement I can give it. I really didn't expect to like it as much as I do!

AAC by 18 months

I have taken part in a lot of conversations about using AAC (in online forums, in real life, and via email) and one of the most popular reasons that I hear about waiting to try AAC with a child is age. Here are some samples:

"C is only 4, no one in the preschool knows anything about AAC so we're going to wait until she can be evaluated in kindergarten." 

"He just started kindergarten and the teachers are getting to know him. They plan to submit a request for an assistive tech eval at the end of the month." 

 "He's three and a half and I wonder if he might be able to use some AAC but the speech pathologist says that he's making steady progress so we should hold off until he's a little older." 

When people ask when we started using AAC with Maya, I'm as honest as I can be (because really, it's hard to remember). I know we were doing some picture card stuff (and signing) before we got an iPad. I know we got the iPad when she was 2.5 years old (only 5 or 6 months after its release, so we couldn't have moved much faster on that), and we started using a communication app immediately. Over the course of the following year (2.5-3.5 years old) we did a mish-mash of that app (which had turned out to be less than ideal), the Word Book, a trial of another device, and probably some things that I'm forgetting. Finally, at 3.5 years old, we found the Speak for Yourself app and ran (fast) with it. (This video shows our communication highlights from 2 yrs old to 5 years old. )

So, at 2.5 years old we were experimenting and practicing and encouraging and trying to figure out a system that could work . . . and at 3.5 years old we found the system that could work (and we literally couldn't have found it sooner---I think we downloaded the app only two weeks after it was put on the market). 

We should have started sooner.

I hate that we didn't start sooner. I'm not one to hold a grudge, but on this I do . . . one of Maya's therapists (we had a bunch of them) or doctors (boy, we had a bunch of them) should have told me, at her first birthday or shortly thereafter, when she clearly wasn't near ready to speak (no motor planning, minimal sounds, etc) "Hey there are some other ways of communication out there---some stuff with technology---and you might want to look into some of it. Or at least put it in the back of your mind."

Why didn't anyone tell us that we should have started so young? Well, for one, iPads didn't exist when Maya was 1, and maybe doctors weren't familiar with the stand-alone devices (many of which wouldn't have worked for a 1 year old anyway, with their non-toddler-friendly organization). The therapists should have known though---high tech or low tech or photo cards or something. Something.

Someone should have told us to start younger. Someone should have been aware of the communication options out there. Someone should have known that the research says to start young. Someone should have told us that there was a way that we could be providing our silent child with a voice, a way to tell us all of the things that she wanted to say.

And so here I am, years later. I am aware of the options out there, and I am aware of the research, and I am telling you to start young.

Start now. 

The title of the blog post came from the recommendation of a highly respected AAC expert, when she was asked about the appropriate age to introduce AAC to a young user. And that's not start around 18 months, that's you should really be on it by 18 months. 

Sound crazy? Think it's too young? Let me introduce you to Will.

Will is the (almost) 17 month old little brother of Maya (a 5 year old AAC user). He has been tangentially exposed to her talker since birth, although most of his hands-on interaction with it consists of "Hey! Will!! Do not take Maya's talker, it belongs to her!" and then I take it away, and then he cries. Yesterday morning, after several of these encounters in a row, I got our "play" iPad out and locked him into the communication app (using guided access). I configured the screen appropriately for a very young user, with mostly 1-hit core words (yes, no, mine, more, help, eat, drink, please) and one highly motivating category (family, which has pictures and names of many family members). After less than 3 minutes, he was using the app purposefully, and I grabbed my video camera and started recording.

(almost) 17 months old. (almost) 7 minutes. 

Is this typical? Who knows. (How could we define "typical" for an AAC user anyway, as that population is basically complex by definition). Will has the benefit of understanding (from birth) that this device is a voice, it's used to talk, etc, so we didn't have to help him connect those dots. Also, Maya's fine motor skills were no where near his at this age, so she would have been a much slower user . . . but how quickly would she have had the excitement of at least understanding the idea---that she can boss us around, say what she wants, ask for something that isn't close enough to point to? It's amazing!

In the next two videos, taken about 10 minutes after that first video, he is already moving past exploring the words and using a combination of AAC, word approximations, sounds, and gestures to tell me that he wants to call Grandma on the phone---something that he wouldn't have been able to communicate without AAC, as he doesn't have a vocal approximation for "Grandma" that I would understand. (He's starting to get it in the "part 2" video and really nails it in "part 3.")

He used the talker all day yesterday. When he woke up this morning, it was the first thing he was looking for---to tell us that he wanted to eat and then to have a drink, to ask again to call Grandma on the phone. He has a voice today that he didn't have yesterday, and he knows it. I think about the parents out there who have kids who are 3, 4, 5 years old . . . or 8, or 12, or 18. The parents who are waiting because they don't have anyone telling them to start young.

I'm telling you to start young.

This was my favorite video, which takes you through the complete learning of a new word. I hadn't used "drink" with him at all before the start of this video. We kept things light and fun and silly and boy, did he learn "drink" quickly :)  Enjoy the giggles.

If you are thinking "well, easy for you to say, he's a "typical" kid without delays" . . . well, you're right. But I was told that Maya's cognitive functioning was in the 0.4th percentile, and I believed that she could do it, too. You may have to model for a while before your child responds---but we speak to kids from the moment they are born and don't expect them to talk back for nearly a year. I modeled sign language to Maya for months before she signed back. This is even easier than that---you don't have to learn signs, you just tap a button now and again as you talk.

AAC by 18 months. If your child is older than 18 months, and you're wondering when to start, the answer is now. If your child is younger than 18 months, but old enough to know that you are dealing with a significant speech issue, and you're wondering when to start, the answer is now.

(And if now you're ready to start but don't know what to do next, check out this and also this.)

Creating a Keyguard for an iProduct/Tablet (learn from my mistakes)

I am an overplanner. It's a characteristic which has generally served me well . . . I overpack (but am rarely unprepared), I'm an excellent troubleshooter (bring me a lesson plan and I'll show you the areas where things may unravel), and I'm a solidly good editor (just don't check this blog too carefully, since I often just think "eh, good enough" and run with it).  So when we decided to try to help Maya switch from a full-sized iPad to a mini iPad and realized that she would need a keyguard (which doesn't exist), I was fairly sure that if I sat and thought about it for long enough, I would be able to create one. And not just create an eh, good enough one, but bang it out of the park on the first swing.

(cue the laughter)

Yeah, it didn't work . . . not initially, anyway. But I did learn a few things, create something decent on the second try, and figure out some tips and tricks that I think would be helpful to any parents/professionals who decide to do something similar on a tablet/phone/iPod.

Background:
Maya is using a full communication app called Speak for Yourself. Her talker is an original iPad in an iAdapter case, outfitted with a durable keyguard. The keyguard is a gamechanger for her----preventing a large number of mishits, allowing her to communicate rapidly and accurately.  Here's the problem: the iPad + iAdapter are big. She's a little girl. It's challenging for her to carry the device, to set it up on a table, etc. As soon as I saw the mini iPad and mini iAdapter I knew they would be a much better fit for her----but there was a big problem. Due to the large number (120) of cells in the SFY app, there is just no way for any company to make a plastic keyguard for it---the strips of plastic would be slivers, bound to splinter off.  We waited for a different keyguard to hit the market (sure that someone would design one) . . . but no luck (yet).  Finally, I decided to see what I could figure out on my own, and this is the best that I've been able to do (so far).

mini iPad/case (left), full sized iPad/case (right)

What I used:  screen protector (any old screen protector is just fine), Viva Decor Glass Effect Gel Pen (transparent color), pointy q-tips
This glass effects pen was undoubtedly the perfect choice---it goes on slightly opaque, which allows you to see what you're doing. It dries clear, hard, and without heat . . . so you don't have to be concerned about heating the iPad screen, as you would if you were to use hot glue. It comes in a squeeze bottle and it's not challenging to make lines that vary from fairly thin to pretty thick. It's also very forgiving---easy to wipe up with a fingernail or pointy q-tip if you happen to make a mistake. (Or many mistakes. Not that I would know anything about that.)

Important tip: If you're going to create a keyguard on a screen protector, you must do it after the screen protector has been applied, otherwise you won't be able to smooth out the air bubbles. First apply the screen protector, then you make the keyguard on top of the already applied screen protector.

about to start

This shows how the gel goes on opaque but dries clear. I had applied a second (wet) coat to the half on the left, while the right shows the first (clear, dry) coat.

My Really-Well-Planned-First-Draft-In-Which-I-Made-3-Crucial-Mistakes
Even thought this draft has a few key design flaws, I think the pictures do a good job of illustrating what the keyguard looks and feels like:

The Stuff That I Messed Up

Crucial Mistake #1: Think about every screen configuration, and account for it as best as you can. I tried to do this, but didn't fully succeed. Have a look:

1. If applicable, make sure to leave space open for the slide-to-unlock bar! (I remembered to do that!)

2. If your app contains a scroll-able pop-up screen that always pops up in a fixed location, leave a space open to make scrolling easier. (This is the word finder box in SFY, which always pops up in the upper left hand corner of the app and is scrollable). 

3. Don't forget the keyboard! If your app has an in-app keyboard, take it into consideration. This is where things started to fall apart for us---with one layer of gel, the keyboard looked fine, so I stopped thinking about it. By my fourth (ever widening) layer, many of the keys were obstructed----you could still press them, but you couldn't see what letter you were pressing. Considering that literacy is so essential to AAC users (and, well, everyone) it's not very nice to obstruct the key labels.

Here was the first draft. Oops:

Good luck finding the P, the Y, the . . . well, about half the letters, actually.

 To correct this I had to get a little bit crazy. I ended up building something that slightly resembles a maze, with small openings to account for the letter labels. There was much squinting and muttering during this process.

I did the easy, non-keyboard-involved part first:

And then switched back and forth between the screens to figure out the gaps. I also took a screen shot of the keyguard screen and had it open on my laptop when I was working on the main screen, to make things a bit easier.

*if you've got an eagle eye you may notice that the horizontal lines are slightly higher in this picture that in the original keyboard shot---the reason for that is coming up

4. Think outside the app---what about the main settings page for the iPad? Luckily since the gel is directly on the screen, if you accidentally cover a button that you need to push, you can just push on the gel and it will activate the button (that worked in the first draft picture below). However, if anyone else will need to do any programming or work controls on the device, you might want to keep things as clear, readable, and accessible as possible.

First draft, not very accessible:

Second try, with the "Enable Programming" row cleaned up:

Crucial Mistake #2: If you need to obscure something, obscure pictures---not text. Literacy is the big goal---don't take the words away. In my first draft I tried to follow the lines between the buttons perfectly, but as I added (more aggressive) layers and the lines thickened, some of the text was obscured:

(sigh)

In the second draft I made the horizontal gel lines just slightly above the divide between the buttons. It's hardly noticeable that small amounts of the picture bottoms are missing.

Crucial Mistake #3: Leave space for extra layers. And apply extra layers carefully. Don't get all the-first-one-went-on-so-thin-and-easy-that-I-can-put-this-next-one-on-more-thickly-and-save-time. The time you save in layer application won't seem so sweet when you've accidentally obscured text or buttons and realize you need to start over.


What We've Ended Up With:
I've corrected the mistakes above. It's helpful, but not amazing---Maya would still benefit from something that would prevent more mishits. (She hits buttons with her knuckles while she's reaching for something else with her pointer finger.)  That being said, it's only been a week, and we're going to sit tight and see how much she's able to refine her movements and increase her accuracy. And I'm probably going to add a few more layers.

Happy keyguarding :)

Perceptions Drives . . . Everything

from the smart people at www.praacticalAAC.org

Perception

Maya loses her balance and falls regularly. She walks the way a bowling ball rolls down a lane with bumpers---diagonally, occasionally veering into a wall and bouncing back to continue crookedly the other way. She seems unaware that her mouth often hangs open, which leads to drooling issues. She often has a hand or fingers in her mouth. When you speak to her, she may or may not look at you, or in your direction. If you talk to her when she is involved with something else it’s quite possible that she won’t even look up, and you’ll wonder if she’s hearing, or able to process, anything that you’re saying.  She may or may not answer yes/no questions reliably (favoring “yeah”) and so when you speak to her you wonder if she’s able to understand what you’re saying or just answering automatically.  You may know her (alleged, per her mom) favorite topics, and try to engage her in conversation, only to be met with blank, open-mouthed silence.  You may have heard that she can (allegedly, per her mom) use a fancy communication device, and you turn it on (thinking “this is way too complicated, with far too many buttons”) and put it in front of her and she looks away, and you say “tell me something with your talker” and she stares at you or slumps in her chair and smiles, teetering too close to the edge and looking sure to fall.

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When Maya is excited, she can move with speed that I never would have imagined a few years ago. I hold my breath when she runs, each unsteady step seeming sure to lead to a vicious fall, but I am impressed with the way that she usually manages to steady herself. The surge in speaking that has happened over the past 10 months tells me that she’s starting to coordinate her mouth muscles in new, wonderful ways. Maya is clever and surprisingly funny. She likes to laugh and to make people laugh and will tell “jokes” that are only funny to preschoolers (like telling us that it’s rainy on a sunny day, or telling us that she wants an alligator for dinner---each followed by a cackle). She is creative, pretending that she’s taking her dolls for a walk not to the grocery store or the doctors, but to the amusement park where they all ride roller coasters. She has a memory that consistently surprises me (if I tell her before school that she can have a cookie after school, you better believe that her first words off the bus in the afternoon are “cookie, please”). I wish I knew how her brain processes things----all too often I see her focused on something so intently that I’m nearly sure she can’t hear me at all, only to have her suddenly turn and answer my question a minute or two later  . . .  as if I were rudely interrupting earlier and now that I’ve given her some space she’ll comply and answer my question.  She has reminded me about numerous appointments that I would have forgotten (“Monday! Speech therapy!”).  She is a master manipulator, and has learned to avoid questions and demands by creating a situation that requires the adult to abandon their request and responded to her instead----like threatening to drop something important, or dangling off furniture so that she needs to be repositioned, or putting her head down and acting as if she’s so tired that she couldn’t possibly continue. She keeps us on our toes. 

Perception drives expectation

When Maya was two and a half she was evaluated by the preschool section of the DOE (among other things, these evaluations determine whether children have impairments significant enough to qualify for a center-based preschool, where all therapies would be provided on site).  Her scores qualified her for services across all domains (speech, physical therapy, etc) but one number stood out: her cognitive functioning was in the 0.04^th percentile for her age. This meant that out of all 2.5 year olds, Maya was in the lowest half of a percent, cognitively speaking. Based on the data from these evaluations, it seemed that Maya was severely, severely impaired . . . a reader of these reports could expect a child that was close to vegetative. Unable to walk, unable to speak, with almost no receptive language (about 2 words), leaving her unable to understand anything said to her. The lowest of the low. She needed a therapeutic preschool, where they will hopefully be able to make some kind, any kind, of progress.

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When Maya was two and a half she was evaluated by the preschool section of the DOE, strangers who arrived with a flourish, loudly asked many questions, and then disappeared. She was shy, and her responses ranged from nervous to puzzled to noncompliant. The woman who would go on to determine her “cognitive functioning” was late, unengaging, and, well, not very good. The results come in the mail a month later, and while it’s never fun to get crappy test results, we see them for what they are (biased, ridiculous, a means to an end and nothing more).  Maya is signing, making animal sounds, playing in an imaginative way (little animals go in the barn, little people sit in chairs for a pretend birthday party, etc), and shows clear understanding of a million little things all day long. She’s got preferences and opinions, and she is determined.  She needs to go to a therapeutic preschool, where they will hopefully be able to recognize her amazing potential, and have the skills to work with a child with a sharp brain but an uncooperative body, to help her gain movement, knowledge, and the ability to communicate what’s going on in her head.

Expectation drives opportunity

Before Maya met her preschool teacher, the teacher had already met Maya. Although we didn’t have the concise, powerful sound bite that “expectation drives opportunity,” we had that understanding (Dave and I were both teachers, and we watched students rise to high expectations year after year) and we were certain to help Maya’s staff set the bar high for her. Prior to the first day of school, they received a packet of information about her, and video clips that showed some of her skills and translated her signs. We had already exchanged emails about her, and the main messages were “don’t let her trick you into thinking she doesn’t understand you---she always does” and “push her---she will keep impressing you if you keep pushing her.”  Maya had been assigned to the smallest class, the class of kids who are, by and large, the neediest of the school (that’s where those evaluations put her, and it turned out to be fortuitous, because the staff in that room was fantastic). Her teacher saw the strengths in all of the kids, and pushed. When she showed me ideas for a communication board, we ran with it at home, and turned it into a word book. The teacher embraced the word book and then supported our quest for assistive tech, despite never before having used a full, dynamic communication system in the classroom.

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When the assistive tech evaluator (L) met Maya, she didn’t expect much at all. L assigned her a low tech device, despite our insistence (and Maya’s demonstration) that she needed so much more. L said “I only give these devices to students who can show me during the course of the evaluation that they are able to use it to make sentences.” This boggled my mind, as I couldn’t imagine preschoolers picking a system up so quickly---yet I was sure that Maya could do it eventually. “How old are the kids you typically give it to?” I asked, and she replied “9 or 10, usually.  Some are a little younger.” 

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We were not willing to let L’s expectations control Maya’s opportunities, and fortunately, Maya’s teacher agreed. She kept her expectations high (and we hoisted the bar up a giant notch when we came into school with a new, huge AAC app, set the iPad on the table, and said “Yeah, we’re sure she can do this.”) . . . and because of this, we laid resources in front of Maya and let her try it all.  She had opportunities, particularly the opportunity to be pushed and supported into a large AAC system, that the majority of 3 year olds simply do not have (although I’d like to change that).   

Opportunity drives achievement

L, the assistive tech evaluator who determined that Maya should only use a simple device, had a plan for Maya. She explained that we shouldn’t overwhelm her with a system that would be too big, or too complicated . . . it would only lead to frustration for Maya, who then might reject the system and cease trying to communicate with it at all. We should start small. Maya would have a device that gave her access to 32 words at a time, a number that was small and manageable. Because the teacher could create 8 sets of 32 words, she could have a set for art, a set for lunch, etc. It might take time, but over the next year Maya would learn how to access the words, possibly even achieving some success with creating simple phrases and sentences.

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We downloaded the big, full AAC app, and we had a plan for Maya. We would present words slowly, but (because of the very smart design of the app) she would always be able to touch a button that made every single word available to her. We would model as much as we could. We wouldn’t force anything, but we would become AAC users ourselves, immersing her in it, and we would leave the door open for her to follow us through (and maybe we would nudge her along a bit, too).  Grammar, mistakes, times when she pushed the talker away, a favorite word pressed ad nauseam . . . none of it mattered if she would be able to say things that were on her mind. We so wanted to know what was on her mind. If we were painting, we wanted her to be able to say “grandpa” if she wanted to paint grandpa---not to be limited to a predetermined set of 32-words-that-someone-else-thinks-Maya-might-want-to-say-when-she’s-painting. We wanted her to have all of the words, to be able to choose her words at any moment, the same way that any other 3/4/5 year old speaking child can . . . and she did.

She told us about the weather, she counted, she spelled her name. She told us her ideas about what we should do on a given afternoon, what we should eat for dinner, what song we should sing. She told us that she loved us, and who she played with at school, and that her ear hurt (it was an ear infection), and who she wanted to Skype with.  She showed creativity, the ability to analyze information, the ability to make connections, (kind of impressive) memory, wittiness, kindness, and sarcasm.  She could communicate, truly.

Achievement drives perception

In the fall, Maya will start kindergarten and leave the security of preschool behind. To find the classroom that will be the best possible fit for her next year (the most perceptive leading to the highest expectations and granting the greatest opportunities, so to speak) we have been assessed, evaluated, and interviewed within an inch of our lives.  In recent months we were asked (by the DOE) to tour certain schools, and several requested that I bring Maya for the tour/interview.  We toured the facilities, heard about class sizes, visited potential classrooms (with Maya wandering right into the middle of the action, of course).  The school personnel had looked over her case, watched Maya boldly step into the classrooms, and smiled in a satisfied way that said yes-this-will-be-a-good-fit.  Until we returned to their offices, and I put the talker in front of Maya, then ignored her and spoke with the other adults. It only takes a minute or two of ignoring before she starts speaking up (although if you try to interrogate her she can hold onto a stubborn silence for.ev.er.) . As she tapped out a full sentence to request a snack or a drink, I could see a flicker---“oh, wait a second . . . “---and as I gently led her into more creative territory (what do you want to do today, who should go with us, what do you think we’ll see there, hold on---what day is tomorrow, again?) the flicker grew, and they were wide-eyed, surprised by this quiet girl who had tricked them.  And maybe (hopefully), surprised by their misassessment.

And, in a mere minute, a huge perception shift. In the following minutes, the comments that Maya “was too advanced” and “wouldn’t be a good cognitive fit here” and “clearly needs to be somewhere where she will be challenged” and “is full of potential, wow!”

In the space of only three minutes Maya’s achievement with AAC reshaped their perception of her as a learner which raised their expectations for her academic potential and offered her the opportunity to not be relegated to an ill-fitting, limiting classroom . . .

In a month-ish, she’ll start in a new school, with a new staff and new classmates and not a single person that she knows. And so the cycle starts again . . . and I’ll be sending over a new packet . . . because I know that my girl isn’t easy to read, and I’m going to try to shape their perception, to show them Maya that I see---manipulative, sassy, stubborn, clever, and full of potential.