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 :)

"I need a new word"

To know that your child can not say the things that she wants to say is nearly indescribably painful. To watch your child develop more or less silently, watching and listening instead of jumping into conversation and interactions, (as you search frantically for solutions that-aren't-coming-fast-enough-I-mean-come-on-she-can't-say-anything-at-all) is a type of heartbreak that is sharp and and slow and steady . . .  not like having your heart smashed with a mallet, but more like having it dissected by a toothpick, one tiny scrape at a time. One tiny, tiny scrape at a time.

If I could give my voice to Maya, I would, in an instant. I'm sure any parent of a child with complex communication needs would do the same. Instead, we figure out systems and signs and devices. Maya's got her talker, along with a variety of nonverbal ways to get her point across and a spoken vocabulary of words and approximations that has undergone an impressive proliferation since the fall.

When we're home together, Maya uses her voice and the talker and gestures in a multimodal, nearly constant, communicative way, and we chat back (and model on the talker) . . . and while our communication isn't "typical" it is comfortable. It can almost feel like, when she draws on all of her various communication resources, she's not limited---like she has a wide enough menu of communication options that when she thinks of something she surely has at least one method that she could use to get her point across.

I would like to believe this is true. 

I tell myself that this is true.

This is not true.

She is limited, still. She thinks things that she can't communicate. We play guessing games and I think that we often are able to figure out what she is trying to say, but not always. 

A month ago I wrote on Facebook about an exchange in which Maya was trying to tell Dave & I something and we had no way of figuring out what she was trying to tell us. She couldn't show us, couldn't sign it, couldn't say it clearly enough that we understood, and then she pulled her talker close and turned it on she hit the button that said "I need a new word" . . . and yet we were powerless to add the word she wanted, since we had no clue what it was. 

(scrape . . . scrape . . . scrape)

This afternoon it happened again. Maya had just finished having a snack, and she turned to me and carefully said "Too wah." 

Me: "Too wah? What's 'too wah'?"

Maya: "Too wah. Too wah. TOO WAH."

Me: I don't understand. Can you tell me with your talker?

Maya: (pulls the talker over, turns it on, opens the keyboard and types "S")

Me: S? 

Maya: "Too wah." (typed "S" again)

Me: Does it start with an "S"? 

Maya: "Yeah."

At this point, I grab the video camera. Dave wasn't home and I was hoping that if I played this back for him later he might have an idea about "Too wah" that I was missing. 

This is what I recorded. This is what it is like.

She quit. She put her head down and she quit, because she could not will me to understand Too Wah. Children with complex communication needs (more commonly-but inaccurately-referred to as nonverbal children) often become passive communicators---they quit. Or, alternately, they rage and breakdown and tantrum. It's the third option---stick to it, don't get upset, stay determined---that is both difficult and essential to foster. I don't really know how to encourage it. I don't know what I would do in Maya's shoes. I think I would want to quit, too.

She gave up.

And then she changed her mind.

The first time we couldn't figure out her mystery word, she gave up. This time she gave up, but only for a few seconds and then she came back. And this time she tried to spell, too! The fact that she thought enough to figure out the first letter of Super Why, and gave it to me as a hint---well, that's pretty big. (That's also indicative of why I'm so obsessed with finding an academic placement for her that will have high expectations, like literacy now-not later.)

We added the button, to the cell that she pointed to initially. (When I opened the screen to add the button she pointed to that cell again, clearly telling me where she wanted the word to be.)

And then we watched Super Why, which everyone loved. Even Will. (The music in this one is pretty loud, so be careful of your volume before you play it)

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.  

This Is What A Great Dog Looks Like

For 3 reasons:

1. It's mindless fun for a Friday night (and a Friday night during a heat wave, at that).
2. Maya's laugh is sure to make you smile.
3. Parker is the best dog ever.


 

I Am Not A Mind Reader (And Neither Are You)

In discussing AAC (augmentative and alternative communication, in which a child uses something other than speech to aid their communication---signs, boards, picture cards, apps, devices) with parents, I am sometimes surprised by their lack of interest in using it at home with their children who have complex communication needs.  Obviously all parents want to communicate with their children, so their resistance often comes from a well-intentioned place . . . they feel like they understand their kids, and so inserting a device (which can feel cumbersome and disconnecting) isn’t necessary.  It might feel more personal to engage with a child directly, through their speech and gestures, and parents feel like they don’t need a device because they understand what their child is thinking.

It’s a (philosophically) dangerous assumption.  One that all parents make at some point, and all parents should abandon at some point.

Picture this:

 

(this picture is from the internet somewhere)

Maya, my 5 year old daughter who has severe speaking challenges, and I are playing outside after school. A yellow school bus drives by and she jumps up, points at the bus, looks from the bus to me and yells “Bus!” (She’s a big bus lover, and “bus” is a very clear word for her.) She has wide, excited eyes and a smile. I know she’s thinking Wow, I love that bus! and so I reply “Yes, a bus! I know you’re excited to see the bus!”

Except here’s the problem---I don’t actually know what she’s thinking. I get the gist (something enthusiastic about a bus) and I assume the details (I love that bus).  This is a big problem, a common trap that parents (and other adults) fall into with communicationally complicated children.  The I-know-what-she’s-thinking mindset solidifies slowly, out of necessity, and initially develops for all parents with their babies/toddlers.  When children start to communicate, they do it through whining, crying, pointing, crawling/walking to objects (often times dragging a parent behind them), making sounds, signing, etc. We caregivers become adept at interpreting this intent-filled mash-up. Eventually, speech comes and the child can more clearly express their thoughts . . . except when speech doesn’t come . . . and then parents get additional practice at translating sounds and approximations, or gestures, or even sometimes just a child’s eyegaze---a glance that lingers on a cabinet, then flicks to their parent’s eyes, then returns to the cabinet.

We predict what our children are “saying”, and, with the youngest of children, we probably get it right pretty often. (After all, if a toddler points to the cookie cabinet and says “ti-ti” they probably want to eat a cookie, not to discuss cookie theory or bake a batch of cookies or conduct a brand comparison or analyze cookie shapes. Probably.)

But as a child with limited speech gets older, a somewhat loaded situation develops when we continue to make assumptions about their speech.  If we assume that in a particular situation (eg. Maya sees a bus driving by) a certain sound/word/sign/gesture (“Bus!” said with excitement) always means more or less the same thing (I like the bus! I love buses!) then we begin to pigeonhole our child’s communication, and to (inadvertently, unintentionally) sell them short.  If my reply to Maya in the bus situation is always something along the lines of “You love buses!” or “I saw that bus!” then I am a) making a simplistic assumption about what she was thinking, and b) replying in a predictable, kind of boring way that doesn’t expose her to any new ideas.  Both of these points---the assumption about her thoughts and the reply that I chose---have unfortunate consequences.

First, the assumption of her thoughts stinks, because I am assuming that she is thinking more or less the simplest thing that I can glean from her communication (one word (bus) +  excitement = I like that bus).  Whether this is accurate or not, I am selling her short by not stretching my mind to allow for the fact that she could be trying to say other (more interesting, novel, creative) things about the bus.

Second, my reply stinks, because my low expectations of what she was trying to say have now lowered the quality of my response. What if she was trying to say “That bus is so yellow!” and I replied “Yes, you like buses.” Ugh. My intentions are nothing but good, but my underestimation of what she is attempting to say has now led to a low level, simple reply. Even if she was saying “I love buses!”, I could offer validation with “Wow, a bus! You love buses! That bus was bright yellow like the sun, and it had so many wheels! I wonder if we’ll see another bus today.” A response along those lines acknowledges her enthusiasm and then models other ways that we can communicate about buses, other things that we can think about when we see a bus.

The simple truth is that “Bus!” could mean a lot of things from a 5 year old. A lot of things. To name a few:

-that bus is yellow                        -that bus is big                             -that bus looks like my bus 

-that bus is not my school bus      -is that my school bus?                  -I like that bus

-I see a bus                                 -do you see that bus                      -I liked riding the bus to school today

-something happened to me when I was on the bus today         -I have a toy bus just like that one, 

-I want to play with my toy bus                                                       -I want to get on that bus               

-look at the wheels (or insert other part) on that bus 

-that looks like the bus from (insert book/movie/tv show)             . . . etc.

The only way to know what Maya wants to say about the bus is to provide her with a way (or multiple ways*) to say as many things as possible. This is why I can’t help but cringe when parents (or others) say “We don’t really need to use AAC (communication boards, PECs, devices, apps, whatever) at home because I know what he’s thinking” (or “I know what he’s trying to say”). Maybe you do, or maybe you get the main idea, or maybe you get it wrong but your kid doesn’t try to correct you (children with limited communication abilities typically become passive communicators). Or maybe your answer is distracting and “good enough” even if it isn’t correct (eg: If your child comes home from school, points to the cabinet, and says “cookie”---thinking about how the girl who sits next to him at school today had the exact cookies that are in that cabinet---and you assume he wants a cookie and give him some on a plate, what’s the obvious reply from your kid? To sit and eat the cookies. You then are positive that he was requesting a cookie and you fulfilled his request, and he is now eating cookies and has moved on from what he was thinking about before.).

Guessing/assuming/inferring what a child is trying to say is not a good long term solution. A vehicle needs to be provided that will allow them to say diverse, novel things in multiple environments. We (the adults) need to learn to ask “What about the __________?” and then wait.  And wait. And wait.  And then, if nothing comes, model different statements that would all be appropriate.  Here’s an example:

Maya: Bus!

Me: What about the bus?

Maya: (silence, watching the bus drive down the street)

Maya: (silence)

Maya: (silence, looking at me)

Me: What do you want to say about the bus?

(more waiting)

Me (speaking and tapping emphasized words on her talker): We could say that the bus was yellow and big, that it was going fast, that you like that bus!

This shows her that there are many things to say about buses, and that using the word “bus” isn’t enough to let me know what she’s thinking. She needs to say more, and I expect that she can do it (even if she can’t do it yet). It shows her other words that would be useful in another situation like this. And it lets me insert my guess of what she was thinking (“I like that bus”) but doesn’t limit her to just that one sentence. It opens both of our minds, a little bit.

 *We have tried many methods of communicating with Maya before settling in with her communication app, Speak for Yourself. Many of those methods are outlined here. This is definitely not a comprehensive list of AAC options, it's just the stuff that we've tried.

It Takes More Than A Village

It might take a village to raise a child, but to raise a child with special needs, it takes a team. A specialized team. One team member to address feeding and speech, one to manage gross motor development, one for smaller fine motor movements, and one for special instruction. One such team became a part of our lives back in 2009.

I don’t remember exactly how old Maya was when she started receiving therapies through Early Intervention, but I would guess it was right around 10-11 months old. She was little and adorable and we knew that she had some delays, but really had no idea how significant her challenges were or for how long she would need therapy.  I had mixed feelings about the therapies, some of which I’ve already shared. We had a very full schedule and it was difficult not to have some resentment over being tied to so many appointments per week, especially when I saw other women with babies in the neighborhood meeting for coffee, having playdates in the park, or meeting up at the playground. I would have fleeting interactions with them as I whisked tired Maya out for 30 minutes between commitments, determined to get some “normal” time into her life.

While the therapies were sometimes a source of frustration for me, the therapists (by and large) were not. Earlier this week I randomly ran into one of them in the city, and as I hugged her I couldn’t help but think that bystanders who witnessed the vigor of my attack/embrace must think that she was a long lost best friend . . . not my child’s former speech therapist.

It got me thinking about Maya’s team of EI therapists. We lost a few (that’s a nice way of saying we gave a few the boot) before finally settling with the team that would carry us through until preschool, the team who would teach Maya and help her to grow stronger and smarter, the team who became my friends and sounding boards.  Each one of these women brought something to the table, and each played a formative role in the way that I interacted with my child.

Our EI therapists didn’t just teach me about exercises and development and milestones . . . they taught me how to be Maya’s mom, how to be the confident, capable mom of a complicated child.  Certainly, I would have been her mom (and a good one at that) with or without them---but they gave me practical guidance, tangible ways to aid in her progress, and (of equal importance) the camaraderie and support that I so needed as I found my footing over those early years.

The therapists had the perspective and knowledge that no one else did---certainly not me, or our family, or friends with typical kids, or even our pediatrician. When I asked “have you worked with other kids who xyz?” I would get a straight, honest answer---and if the answer was yes, we knew what to try . . . and when it was no, I got my first glimpses into just how outside-the-box Maya would turn out to be.  They could draw from their experiences with other kids who followed similar paths to a certain skill, they knew which toys or household items offered the most bang for the buck, and they could see when we were working hard, even if progress wasn’t coming as fast as we had hoped.

Together, the therapists and I learned when it was appropriate to push Maya, and when to back off.  We worked as a team, each provided the other with new bits of information about what she was able to do, or secret motivation tips. Every time that they confirmed my suspicions (It seems like she might drool more than other kids her age---have you noticed that? I’m not sure if that should be slowing down now.) or agreed with my assessment of progress (Did you see her reach across midline? Was she able to do that last week?) I became more confident in my ability to collect data, the sharpness of my observations, and the accuracy with which I would be able to discuss my daughter with the countless doctors that we were frequently visiting.  I can only see it now, in hindsight, but I needed the validation that they provided when they saw me working with and interacting with Maya—their approval helped me rest ever so slightly easier, knowing that we were doing the absolute best that we could.

Well, most of the time.

Other times we weren't doing the best that we could. I was frustrated or Maya was having a week of temper tantrums. I was at the end of my rope with appointments and reports and bad news and lack of progress, and the therapists became my sounding board. They were the only adults that I was interacting with, they were in my home, and they knew everything about Maya---it made sense that they were often my news-guinea-pigs . . . the first people that I would tell about a genetic test we were running, or an evaluation that had yielded surprising results.  Their thoughtful (as in full-of-thought, not as in kind) reactions, follow-up questions, and words of wisdom helped me to process things more deeply and figure out exactly how I would relay the information to our family and friends (and readers).

The therapists balanced out the well-meaning-but-not-very-informed input from those not privy to the reality of raising a child with special needs. Those who weren’t in my living room, on our gym mats, watching me stretch and position and move Maya’s limbs, who would say “Well, my doctor said that they’ll basically learn everything themselves with enough tummy time . . . maybe if she spent more time on her belly it would help?”  Those who weren’t in my kitchen, as I sat across from Maya with chewy tubes and used one hand to steady her head and open the side of her mouth while she cried and I tried not to clench up, who said “My friend’s daughter did the same thing---she was a really picky eater but they just kept offering the same foods and eventually she realized that she had to eat what they gave her.” 

Collectively, the therapists saw my eyes fill with tears more than anyone, ever. (I am generally not a crier.) And they did a great job continuing with rational conversation and pretending that it wasn’t happening, which was the exact thing that I was hoping that they would do.

The therapists loved Maya, despite the fact that they weren’t obligated to do so, and that expression of love gave me the hope and belief that others would see how amazing she is and love her, too.  They treated her with tenderness, but also didn’t let her use her extra challenges as an excuse (No, you are not too tired to clean up, get your little head off of that table, sit up, and help put these markers away.).  They appreciated her sass and jokes, but forced her to get down to business and do her work.  They treated her like family, and (I believe) they looked forward to the time that they spent with her.  The honesty of their feelings for Maya—the fact that they knew all of her challenges and struggles, all of her stubbornness and sass, the great stuff and the not-so-glamorous stuff--- and they welcomed her with open arms and loved her without conditions---it touched one of my first, deepest, unspoken fears about having a child with special needs: what if people don’t love her the way that they would have if she was “typical”? What if she doesn’t have friends?  The EI therapists were her first friends.

For the therapists reading this, the ones who go above and beyond, the ones who love their little patients and listen to their (sometimes fragile) parents, the ones who go home at night and think about the families that they work with . . . thank you.  I’m thanking you on behalf of the parents who are tired, or angry, or stretched too thin, or emotional, or shy, or introverted . . .the parents who aren’t remembering (or aren’t able) to thank you themselves (I have been all of those parents, by the way).  We know that it’s not in your job description to love our kids, or to be our friends, but you are in a unique position---kicked into the inner circle of a family in crisis---and the ways that you offer support are making a critical difference in our lives . . . even if we can only see it in retrospect.  Keep up the good work. You are changing lives. Thank you.

Especially for KN, NB, VC and CT. Thank you.

What To Say To The Parent Of A Child With Special Needs

In my time blogging about raising a child with special needs, I’ve received a good number of emails. There are several recurring themes to these emails: some about assistive technology, some about looking for specific resources or online communities, and several from friends and family members whose loved ones have recently had a child diagnosed with special needs. In this last group of emails, people often express their love and concern for the parents of the newly diagnosed child and ask me “What should I say to them?”

Another writer answers that question this week in her article “5 Things That You Can Say To The Parent Of A Child With Special Needs.” Disconcerting, though, is the fact that although I am indeed “the parent of a child with special needs” I would not be jazzed about receiving some of these suggested comments. Let me explain why, and then I’ll offer my own thoughts on what to say.

First, don’t tell me “I’m sorry.” Like, ever.  “I’m sorry” leaves a disturbing amount to interpretation. Are you sorry that my kid is lying on the ground and throwing a fit? Ok, but maybe “we’ve all been there” would be more clear. Are you sorry that I’ve spent so much time in therapy this week, or that we had 2 doctor’s appointments yesterday, or that I’m stretched so thin that we can’t get together? Maybe “I’m sorry that things are so hectic for you right now” would fit.  Are you sorry that my kid has special needs? Well, you can keep that to yourself.  To me, “I’m sorry” comes across as “I’m sorry that your kid is the way that she is.” or “I’m sorry that you are burdened by your child.”  As I hear it, it’s an insult to my child (and a pretty bad one at that). I don’t want your sympathy, and Maya is not a circumstance to feel bad for, she is a lovely little girl. 

Second, please don’t ask for her diagnosis. It’s not appropriate to ask about other people’s medical information. Asking for a diagnosis is not making small talk, or breaking the ice----it’s asking about her private medical business. If you want to make conversation that acknowledges her challenges or “break the ice” you could ask about something specific, I guess, like “Is it hard for her to climb those stairs?” or “How long has she been using her communication device?”  If I want to share information about her diagnosis, I will----if not, asking makes things a little awkward. (PS-If you’re new here, Maya doesn’t have a diagnosis, which is particularly fun to explain to bold strangers. One time, in response to hearing that Maya didn’t have a diagnosis (after she asked), a woman asked me if I had ever taken her to a doctor. A woman I had never met asked me this. While I was eating in a diner. With my family. Seriously.)

Now, possibly disregard everything that I just said . . . because while all of the above rings true for me, it might not for others.

Undoubtedly, there are some SN parents who would appreciate “I’m sorry” and would enjoy being asked about a diagnosis. (If you’re in doubt, see the little conversation on our Facebook page last night.) I would hate those comments, but some would love those comments, while some just want to be left alone (ok, that’s often me as well, given my anti-social tendencies. I’m working on it.) and others are so happy to be out talking to other adults that they don’t care what the conversation is even about. So . . . I guess we’re all different? Who would have thought!

The bottom line is that there are no universal things to say . . . parents of kids with SN are as diverse as any other group of adults (parents of kids with brown hair, parents of kids who wear shoes, etc). Our commonality (and, to be fair, it’s not one to be underestimated) is that we have a lot on our plates . . . we are short on time and long on stress, we struggle with more than our fair share of emotional turmoil, we are usually fighting several battles at once, and we are worried for our children and their futures. But everyone responds to these stressors, and to fear of the unknown, very differently. Some people want reassurance (this will all be ok), some want sympathy (this is terrible, isn’t it?). Some people want to talk about the issues (tell me about the diagnosis), and some want to ignore them (isn’t the weather lovely today?).  

For those of you who have come here through a search engine because you’re actually trying to find the right thing to say, I offer this: just love the kids. Nothing meant more to me (and continues to mean more) than friends, family, and coworkers doting on my kid. All parents enjoy seeing others care about their kids, but for me (and, I imagine, for many other SN parents) the ideas of acceptance, inclusion, respect, and love are especially loaded.

For those of you who are just wondering what to say to the random SN parent that you might bump into at the playground, I would go with something simple. You know, like “Hi”. 

The Gatekeepers

Children with complex communication needs (CCN) need various devices, tools, and supports in order to communicate effectively and to access the curriculum in their schools. This is a simple, solid, well-researched principle and it is the legal right of a child with CCN to have a device and the support services necessary to implement the device (staff training, family training, etc.).

Between the children and the devices stand The Gatekeepers . . . the professionals (generally SLPs) employed by the DOE who have the responsibility of evaluating children (of various ages), assessing their strengths and weaknesses (despite having just met them) and formally recommending an exact communication device/app that will serve them for at least the next year (after only working with them for an hour or two).  It’s a big job. A huge job. The correct recommendation can allow a child to suddenly answer questions in class, make small talk with her teacher, ask questions, and make connections. A faulty recommendation could be too complicated, left to become an expensive paperweight as it is abandoned by the staff or the user . . . or it could be too simple, quickly rejected by a child who tires of saying “Today is Tuesday.” “Today is cloudy.” “I want juice.”

These gatekeepers . . . I don’t trust them. And you out there---parents, classroom teachers, therapists---you shouldn’t (blindly) trust them either.

This mistrust---it is not paranoia. It is based on countless emails (from around the world), an unfortunate number of personal conversations, and two startling encounters that I have personally had with the gatekeeper who would be in charge of Maya’s AAC (I said “would be” because this person would actually have the power to determine what Maya is allowed to use, if I hadn’t decided to reject her recommendation and go rogue). Seriously, the most recent exchange---in which she deemed Maya’s AAC device inappropriate and attempted to replace it with something else---will blow your mind. But I’ll get to that in a minute.

I want to be clear on this: I do not believe that the gatekeepers are intentionally trying to foil children with CCN, to withhold resources from them, to impede their ability to communicate and to make progress. I believe that they want to help, and I believe that they think they are helping. But the people who rise to the position of gatekeeper have typically been working “in the system” for a while, and they are frequently set in their ways. They often have a handful of go-to items that they recommend (you get a TechSpeak, and you get a TechSpeak, and you get . . .um . . . a TechSpeak). They can be overconfident---sometimes brazenly so---and are often unreceptive to concerns/push back from parents (and sometimes even from school staff) who they view as either uninformed or misinformed about AAC. Since the iPad boom, many gatekeepers are now borderline paranoid that families “just want an iPad” (that was basically the opening line of our assessment last year---“we’re not going to just give you an iPad”---despite the fact that I hadn’t requested, or even mentioned an iPad.)

A professional who is overconfident, who tenaciously adheres to her recommendations without accepting  input from others, who assumes that others are misinformed, who becomes defensive when families express a difference of opinion, and who enters a new situation with the predisposed assumption that she’s going to offer one of three standby items . . . well, that’s not a great professional. Now if that same professional is in charge of speaking for children who have no voices of their own . . . well, that’s downright dangerous.

My daughter, Maya, is a 5 year old with complex communication needs. She had a (terrible) assistive technology evaluation from the DOE last year, in which I fought for a dynamic device that she would be able to grow into, and the SLP in charge insisted that a static 32-button device was all that she needed, and all that she would be capable of using for the upcoming year. (The above paragraph is a fairly accurate description of L, our evaluator from the DOE.) I have since learned that preschoolers are notoriously underserved with regards to AAC. Assumptions about starting slowly, not overwhelming the learner, proving competency on low tech/no tech systems before progressing to dynamic displays are so ingrained that many old-school evaluators don’t even think of these things as biases, they think of them as facts. (sigh)  After this disheartening evaluation I realized that the only people who would presume competency and have audaciously high expectations of Maya were my husband and I.  I logged a ridiculous number of hours researching AAC and got Maya set up on a communication app that has proved to be wildly successful for her.  The video below, presented at an AT conference on April 27^th, shows how she became an independent communicator (and it’s pretty inspirational, too). After our presentation we were approached by several DOE employees who commended us as a shining example of how AAC can be successful with early learners.

If you don't want to watch the whole thing, you should just fast forward to something in the last 2-3 minutes and watch for 30 seconds. It will give you a frame of reference for the madness below.

So imagine my surprise when,10 days later, I received a call from L, informing me that she had just finished Maya’s AT re-evaluation. (I had requested the evaluation months earlier as a formality, a part of the Turning 5 process, but was not notified ahead of time that the evaluation would occur that day—otherwise, I would have been there.)  When I requested the evaluation, I had assumed that the evaluator would make note of the fact that she was using a dynamic display device with a communication app functionally and independently and that should be protected on her IEP. I had assumed incorrectly.

L stated that based on her observations and reports from the staff, Maya was “unable to navigate her system independently”. She said that “the display was overwhelming” and that Maya “didn't have the motor skills to access the buttons or the keyboard”. She said "when I saw it, even I was overwhelmed by it." She told me that when Maya wanted to request a drink it took her “several minutes” to find the correct button.  (At which point I could not prevent myself from interrupting “Hold on. That is simply not true. There is no possible way that it took her several minutes to find the button for drinks. You are a lying liar who is falsifying evidence to make your case stronger, but I am smarter than you realize.” Ok, I may not have said that last sentence aloud, but I thought it.)

You may be wondering how anyone, even an overconfident biased gatekeeper, could spend time with the girl in the above video and come away thinking that her app is anything less than the perfect system for her . . . but, to be fair and honest, it’s not as simple as that. It is important to note here that Maya often chooses not to use her talker at school. I am reasonably sure that this is because the classroom staff models on many different devices (as opposed to home, where our modeling all occurs through her talker). As professionals know, aided language input is basically the most powerful tool that communication partners have----and since Maya is able to code switch with ease, she will gladly hop on to a TechSpeak, a communication board, a PECS book, or whatever the teacher is modeling with in front of the small group. She is also using word approximations with her speaking voice more and more.

However, Maya’s choice to use multi-modal communication is not in any way indicative that her current AAC device is ill-fitting or inappropriate, or that she is not able to access it independently. To the contrary, L was informed that I had “extensive video footage” of Maya using the device independently at home, but that they did not often see the same level of usage at school. (Interestingly, L acknowledged that she was told that such video existed but expressed no interest in actually seeing any of it. A weird decision,I think--- to intentionally choose not to view evidence of a child independently using her system before declaring “This child cannot independently use her system!”)

This conversation was heated, as you may imagine. When I was able to get a word in edgewise I pushed back, specifically asking "did the staff say that she is unable to use her device or that she often chooses not to in favor of using the other systems that are being used in the classroom" she relented that yes, they said she was able but refused. However, as our conversation progressed, she often returned to a language of disability. 

The gatekeepers might think that this is semantics, but it’s not. A child like Maya, stubborn and willfull but flexible and clever, may jump around to different systems. Or she may entirely reject her system from time to time—and she’s allowed to do that. Sometimes I don’t feel like talking either. And there are certain people who I’d prefer not to talk to at all, ever. But there is choice and there is ability . . . and if she has proved, repeatedly, that she is able to use a complicated, full AAC system that can grow well with her and carry her into adulthood . . . then to take that away is worse than a bad idea. It is a tragedy. It should be criminal. How dare L call me and tell me that she wants to take Maya’s system away and replace it with---

Oh yeah. I didn’t tell you what she wanted to replace it with.

L’s  recommendation was to switch to a New App. She wanted Maya on a 15 word display (despite the fact that she currently uses a 120-word display to independently produce novel spontaneous utterances). She thinks that because New App uses word prediction (shifting screens that prompt next word choices) Maya will have greater ease at participating during certain parts of the school day, like morning meeting. I was concerned that New App doesn't operate according to LAMP principles, and that Maya already has learned a large vocabulary using an app that works via motor planning. L said that since Maya was able to quickly make sentences on New App during the trial, this wasn't a concern. (Maya could make sentences on anything quickly, she’s a sponge like that.)  I was concerned that New App will allow for fast sentence production, but robotically (“Today is Tuesday, Today is sunny. I want the blue marker.”) but will take away her spontaneous, true communication (“Rainy. Tornado! Scary.” ---which might not be grammatically correct, but it’s creative and spontaneous and way more valuable to me than “I want the blue marker”). L told me that her only concern was ensuring that Maya was able to access the curriculum, and that pragmatics and social language were not her priority.

So basically, we should take away Maya’s only way to communicate her thoughts and replace it with a system that would that would decimate both her vocabulary and her ability to speak in a novel, creative manner. Also, the meager vocabulary that would remain would be reorganized in a system of folders . . . so a word that she could currently say with 2 taps could take 3 or 5 or 6 taps, and she would need to remember first tap this folder, then tap this other one, then scroll down and tap another folder and then there it is!  We should take away her language and give her something “simpler” because you don’t think she is smart enough to handle her system. Because you underestimate her, and your goals are consequently minimal.  Because she is stubborn and won’t comply with requests to use her talker, you want to take it away and give her a system so beneath her long-term (and really, short-term) capabilities that it is disgusting.

It’s akin to telling Picasso “Show me how you paint. Come on, show me!” and then when he fails to perform for you demonstrate his ability, you ignore his body of work, declare his paints too complicated, and leave him with a pat on the hand and a box of crayons instead.

(Yeah, that’s right, I just compared my kid to Picasso.)

If there are gatekeepers reading this, know that you are potentially dangerous. Make note of Maya. Make note of her, see how wrong one of your professional brethren was, and carry her with you as you move through your day’s multiple evaluations. L did not presume competence. L did not believe that Maya’s code-switching, multi-modal communication abilities, combined with her stubborn sass, could make her a child who is oh-so-able but also not-so-compliant. She assumed that my child wasn’t capable and she assumed that I was a mom who was overestimating her kid, who had bought an app without doing my research.

And she almost took Maya’s voice away.

Now I know that I’m just a lowly parent, likely misinformed or uninformed about this newfangled assistive technology wizardry. But before you cast this essay aside as the ramblings of a biased, over-estimating mother, allow me to introduce a piece of evidence that supports my case. As it turns out, L’s DOE evaluation was so late in coming that I had a private assistive tech evaluation done at a hospital in the city (rushing to have something on paper for our IEP meeting) two months earlier. This team met with Maya 3 separate times, realizing that she is slow to warm up and unlikely to perform on demand. When I told them, at the end of a frustrating first session, that I had video of Maya using the talker independently at home, they were eager to see it, to understand the full picture of Maya as a communicator. This team wrote a formal report that basically was an exact negation of L’s recommendations.  Here is one paragraph from that report:

During the initial evaluation and when getting to know Maya, it took Maya some time to feel comfortable using the device on command from therapist. Rather, Maya appeared to engage in conversation using the device when her mother and therapists were speaking. Once feeling comfortable with the therapists, Maya demonstrated ability to find icons in various folders demonstrating the potential for functional ability to communicate using this device. With practice at home and in the assistive technology occupational therapy clinic, Maya has demonstrated with ability to sequence selections. Additionally, Maya has demonstrated ability to search for icons by typing the beginning of the word on the on-screen keyboard.  It is evident that after searching for one item, she is able to locate the icon later on in the session suggesting sufficient carry-over when using the device.

I am an informed parent, and I speak SLP with surprising fluency. I understand and can debate best practices with regards to device selection and implementation. I am open-minded enough to carefully consider suggestions (I even called other AAC specialists to discuss the merit of possibly switching apps, just to make sure that I wasn’t overlooking something in my commitment to our current system) . . . but I am also confident enough to stand my ground.

I am not the typical parent who walks into an AAC evaluation. And that’s what scares me the most about these gatekeepers. Their recommendations are often unquestioned . . . or questioned gently. A timid “You don’t think he could handle more than a TechSpeak?” gets railroaded with “We can always re-evaluate him next year and maybe by then he’ll be ready for more. Right now we don’t want to overwhelm him with too many words---you know, he’s never seen anything like this before. He can practice at school during snack time for a few weeks, then they can make some activity-specific boards, and then he could even start using it at home! That’s a lot of things to work on!” 

(That’s not a year’s worth of stuff to work on.)

Fight hard, parents. This is your child’s ability to communicate that you’re fighting for. Children who learn to take conversational turns are able to become more assertive and independent as they are empowered to speak up, instead of sitting passively and waiting for someone else to (possibly) speak for them. Children who learn to combine words and phrases and form expressive sentences are actually mapping the language parts of their brains.  This is not just about answering simple questions or requesting a snack, this is about language development, cognitive development, independence and empowerment.

This should not be blindly left to a gatekeeper. A child’s communication system should be determined through careful collaboration of the parents, professionals who regularly work with the child, and the gatekeeper . . . not to mention the user, if he or she is old enough to reliably indicate a preference for a particular system.

Educate yourself. If your child has enthusiastic teachers or therapists, educate them about AAC as well. (Not to be biased, but this post isa decent compilation of resources to get started with.) Go into these evaluations with some loose ideas of what you think might work. Listen with an open mind, and if the gatekeeper has a different opinion ask questions like “In which ways do you think (their suggestion) would be more appropriate than (your preference)?” Do not be afraid to push back. Do not get railroaded, do not let them rush things. This is not just the gatekeeper’s first appointment of the day, this is your child’s voice.

Do not be afraid to have audaciously high expectations of your child.  Do not let a gatekeeper make you question your child’s ability or competence.

Finally, to the gatekeepers. I am sorry if you read this and became infuriated with my misrepresentation or lack of understanding as to your intentions and responsibilities. I am sorry if you feel like I painted an unfair picture of what must be a taxing job. But we had 2 evaluations with our gatekeeper, 16 months apart, and her underestimation of my child (both times) would have had the potential to destroy a great deal of progress and lower the expectations of Maya’s educators if not for the fact that I was informed enough to get mad and fight back. And so, quite honestly, I don’t mind offending hundreds of you if this blog post empowers even one family to presume competence, dream big, and fight back.

An important addendum (6/4/13): In hindsight I realize that this post could read as if I am anti-low tech (or no tech) AAC, which I am not. What I am against is the underestimation of kids with complex communication needs.