Wednesday, October 1, 2014

AAC Awareness Month: The Introduction

October might be my favorite month of the year. I love the multicolor leaves, the edge of cool in the air, salted caramel mochas, all of it. And, as a bonus, it’s AAC Awareness Month!

AAC (Augmentative and Alternative Communication, if you’re new to this) is actually a topic that could use some increased awareness. People may be unable to speak their thoughts for a wide variety of reasons; and while some people use AAC 100% of the time, other people can use verbal speech for much of the time but need to switch to AAC when their ability to speak becomes inaccessible, which also happens for a variety of reasons. My first introduction to AAC was in learning about Stephen Hawking, but “that guy with the computer voice in a wheelchair” was kind of all I knew . . . until I had a child who couldn’t speak.

In celebration of AAC, and in the spirit of raising awareness, I’ll be doing a month of daily AAC related posts. In the spirit of maintaining the illusion of organization, each day will have a theme and there will be a lot of sharing of external resources. Here’s the breakdown of what you can expect each day:


More Resources Monday  . . . AAC articles, links, and resources from around the web
Take-a-look Tuesday . . . AAC related videos to check out
I-Wrote-something Wednesday . . . a new AAC related blog post from me (I know the title's a bit of                                                                a stretch. Alliteration is hard.)
Throw Back Thursday . . . an re-run of my most popular AAC pieces
#AACfamily Friday . . . a compilation of pictures sent in by AAC users (and supporter of AAC       
                                         users) (Please join in! More information here.)
We-have-a-life-too Weekend . . . in which nothing gets posted here, because we are too busy. (But 
                                                        there will still be AAC stuff shared on the blog's Facebook page 
                                                        over the weekend!)

An easy way to spread the word about AAC is to talk about it on social media, and here are a few FB background pictures that I saw going up yesterday, in case you’re interested in grabbing one:


from me



And a little profile pic, too:


Two announcements:

1. If you remember a great AAC article, website, or blog post that you read, one that really taught you about AAC or shaped your opinion on complex communication needs and AAC, please share it with me (here, on Facebook, or via email: uncommonfeedback@gmail.com) I’m on the hunt for the best of the best to compile and pass along!

2. If you’re on Facebook, now would be a good time to follow our blog’s Facebook page, where I will be sharing other AAC stuff that comes across my newsfeed. It gets updated a bit more frequently than the actual blog does, and there are some great conversations that happen there, too.


Happy AAC Awareness Month!




Monday, September 22, 2014

#AACfamily Friday

My daughter uses a talker to communicate. Nothing delights her more than seeing other children, or adults, who also use talkers to communicate. She doesn’t care which app they’re using, which church of AAC theysubscribe to, whether they gravitate towards low or high tech . . . she just likes seeing people who speak with things other than speech.  She sees it, recognizes it, and connects with it . . . these alternative communicators who she sees as just like her. She’s eager (sometimes too eager) to check out their systems, to hear their voices and see how their words are organized. She’s excited to see other AAC users. She doesn’t judge their systems, or remark that perhaps they should change their vocabulary layout or move onto a bigger grid, or get a different case for their iPads.

She sees another AAC user and she celebrates.

We AAC families are, well, a type of extended family. We are lumped together in the public eye: people who “use some device to talk” (or people who have a family member who uses something to talk, or therapists who are often seen using devices to talk as they model and plan).

We are bound together. An #AACfamily.

We are proud AAC users, or we are parents who have fought to provide our children with voice, or we are siblings who have learned to speak the language system that our sibling uses,  or we are clinicians who have laid awake at night thinking of what will work for their clients.

We are #AACfamily.

Speak for Yourself users, Proloquo2Go users, LAMP users, TouchChat users, PODD users . . . I’m looking at you.

PECS users, Tobii users, Dynavox users, PRC users . . . I’m looking at you.

GoTalk Now users, TechSpeak users, AutisMate users, Aacorn users, users of the apps and systems that are escaping my tired mind . . . I’m looking at you.

Therapists, huddled over your iPads and programming, ripping up binders and duct taping and laminating into the wee hours of the morning  . . . I’m looking at you.

We are family, united in our need for communication modifications. We are family, united in our passion for presuming competence. We are family, united in our challenges: did you remember to plug in your child’s voice and charge it tonight? Do you spend way too much time trying to figure out appropriate amplification? Do you think to yourself “seriously, we should own stock in laminating pouches and velcro?”

Our “nonverbal” (ha) children have so much in common. So much. And, by extension, so do we. We share the challenges we face, the triumphs we share, the doubts, the IEP goals, the worries over whether this year’s classroom staff will model language enthusiastically.

We share the moment when our child first said something with their talker that they couldn’t have said without it.

We share the way we teach extended family members about the importance of modeling, the way we see the AAC siblings start to use a talker and think about meaningful peer models, the time we spend online reaching out to new users and saying “no, seriously, AAC won’t impede speech.”

We are #AAC family. We may speak different symbol languages, but we are in this together.
We may use different devices, we may have different vocabulary philosophies, we may all feel passionately about our personal preferences . . . but our differences, in a global view, aren’t so great. Compared to the general public, we certainly have more in common than not.

And so, happy almost AAC awareness month to you, my family J

October is AAC Awareness Month, and I’m declaring Friday to be #AACfamily day. Let’s come together to celebrate AAC users and raise awareness about AAC! Here’s how it works:

1. Email me an AAC related photo (uncommonfeedback@gmail.com). Here are some ideas: your AAC user using their device (or with their device), siblings or families using the device, your device charging, your PODD book resting overnight, your PEC making supplies strewn across your kitchen table, a photo of your laminator in use, (professionals: your devices charging, the gadget you might be hoarding, stacks of folders that you’re putting reports into) . . .anything AAC related. Anything. 
(If you have a label you would like me to use, eg “John climbing a mountain with his talker!” then please include it. If the photo comes with an email that says "Katie at the beach with her iPad." then I will assume that's what I should post with the picture.)

2. If you have an AAC related link that you would like to share, include it in the email. I will include links to anything AAC related: a blog, a Facebook page, a twitter account, a Pinterest page, a website (app/product related, clinic related, whatever), a youtube channel, a Facebook users’ group, your favorite AAC product’s page----if it’s related to AAC, and you want me to share it with your photo, I'll put it up!

3. If you would like to double share, please feel free to share pictures, links, anything on Fridays in October with the hashtag #AACfamily  on your twitter or Facebook pages (for FB users: you’ll need to set your post to “public” if you want it to appear when people search for #AACfamily on Facebook)

4. Spread the word. The more, the merrier. Share this with your therapists (or your clients), in users groups, on FB/Twitter, with your AAC friends. We need to stand together, to celebrate together, and to spread the word (and the love) together. I want to see users of every device, every app, every language system, represented every Friday! I want to see therapists, users, families, friends, adventures, anything! Whatever differences we have, we have more in common. Let’s come together as users of augmentative and alternative communication systems!

*There are 5 Fridays in October and each of them will be #AACfamily Friday. If you want to send me 5 pictures today and specify “this is for week 1, this is week 2, etc” that’s great!  If you want to wait and take new pictures each week, that’s great too! Photos must be received by 8:00pm (EST) Thursday night in order to post on the following day.

My kids. #AACfamily



Monday, September 8, 2014

Comparison of Volume (Intensity) in iPad Cases (and a speaker)

In forums and groups of AAC users, iPad cases are discussed a lot. Durability is a big concern for everyone, some people are focused on weight, others on handles/ease of carry, and there is an emphasis on the fact that volume is important. Volume is HUGE. As a speaking person, I can raise my voice to be heard at a windy playground, or in a crowded restaurant---and it's important that Maya can also be heard in those settings. She has the right to be loud! We've always used an iAdapter case on her talker (or mini, as she has now) because it was the only amplified case on the market---and that amplification is essential. (There is now another amplified case available, but at $395 I'm not buying it to test out.)

A lot of new users aren't able to buy an iPad, an app, an a very pricey amplified case, and I often see "we're using xyz case right now but may get an amplified one in the future." Some people use their case as-is, others use an external speaker (which plugs in to the headphone port on the iPad) or a bluetooth speaker (which works wirelessly). Recently I bought the ION Clipster bluetooth speaker to use with Will's talker, when needed, and was surprised by the sound quality and volume (in a good way). Since I have a variety of cases at my disposal, it made sense to do a quick analysis of volume, so that users who are debating different options have a bit of data.



Products: The products tested were: the Gripcase, the Otterbox Defender case, the Griffin Survivor case (with back speaker flap removed), the iAdapter mini case, the ION Clipster bluetooth speaker, and a plain (uncased) iPad.  Decibels were measured using the "Decibel 10th" app.

Method:
Set-up: The iPad being tested was positioned 25 inches from the data-recording iPad, with speaker facing towards the data recorder. The internal volume of the iPad was set at its maximum level.

Test language: Each iPad ran the same sentence set ("My name is Maya. I can do it! This is only a test.") on the same voice (Katherine-American, fast rate, very high pitch) in the same app (Speak for Yourself).  On the second night of testing I also ran the same sentence set in the app Proloquo2Go, after several users reported feeling like the P2G app runs louder than SFY.

Trials: Each iPad was run 3-5 times consecutively to ensure that the data was consistent. The decibel number recorded was the "average" intensity displayed after running those sentences. The entire experiment was conducted within a  short timespan (less than 10 minutes) on one evening (so ambient noise should be discountable) and then completely repeated the subsequent evening.

Data:


Case/Speaker
Average Intensity (dB) 9/5/14
Average Intensity (dB) 9/6/14
iAdapter mini case-HI setting
93
93
iAdapter mini case-LO setting
91
91
ION Clipster Bluetooth speaker
(at full volume)
91
91
Gripcase
76
80
iAdapter mini case-OFF setting
78
79
Otterbox Defender case
76
80
iPad without case
76
80
Griffin Survivor case (SEE NOTE #2)
76
80

Important notes:
1. I wouldn't put too much stock in the accuracy of these decibel readings. The app seemed to work consistently enough to get a main idea and notice trends, but I had no way of checking the accuracy of the actual dB readings.

2. The Griffin Survivor case typically has a flap that covers the speaker. Two weeks ago I became very frustrated that the kids could never hear me when I used that device for modeling, and I cut the flap off with a pair of kitchen scissors. I am 100% sure that the Griffin Survivor would be quieter than all other things on this list if the case was actually intact.

Interpretation:

1. The iPad without a case, the Gripcase. the Otterbox Defender, and the Griffin Survivor (with back flap removed) all tested at exactly the same level, although if the Griffin case was intact (see above note #2) I anticipate it would have been quieter than the others. The iAdapter case in the OFF setting appears to be at close to the same dB level, although the reading differed slightly from one night to the next.  Bottom Line: If you are planning on buying one of these cases the volume provided by the case shouldn't be one of your decision-making factors---they're all the same. You will definitely need an external or bluetooth speaker if you are using one of these cases in conjunction with an iPad as a communication device. This level of intensity is not enough to be reliably hear in crowded or outdoor situations.

2. The iAdapter case on LO setting tested equal in intensity to the ION Clipster speaker, when the Clipster was at full volume. When the iAdapter is turned on HI, it was the loudest of all items tested. Interestingly, the voice quality between the iAdapter and Clipster are different, even at the same intensity (volume) level. The iAdapter voice sounds a little more thin, or tinny, and the Clipster voice has more depth to it. This clip shows the sound difference:





Bottom Line: These are both good options, although they differ in a few respects that may make one preferable to the other on a case by case basis: The iAdapter offers the most volume, the Clipster doesn't get as loud but has a richer sound. The iAdapter speakers are built into the case, the Clipster has to be attached to either the case or the AAC user.


3. The ION Clipster's volume reading had a significant change (+5dB) depending on where the speaker was aimed (away from the listener/toward the listener). Bottom Line: If you use the Clipster across multiple settings, be mindful of which direction the speaker is facing. This is particularly important if you attach the speaker to the back of a case that could end up in the user's lap (circle time at school, carseat, stroller), which will aim the sound downward and possibly muffle the speaker.

4. Several users of Proloquo2Go mentioned to me that the amplification aspect of a case might not be as important to P2G users as it is to SFY users because the P2G voice is louder. Since I own P2G I ran the same sentence set and found that the P2G app actually is softer (-3dB) than Speak for Yourself. The P2G voice is a bit richer, and the pauses in speech feel more natural, so I wonder if maybe the perceived "louder"-ness is actually just an increased ability to decipher the speech from further away due to tone and speech pattern, because it actually measured as quieter. Bottom Line: Proloquo2Go tested as softer/less intense than the Speak for Yourself app, indicating that volume should be an important part of case selection regardless of app used.


Disclaimer: I have no affiliations to any of the cases, speakers, or apps mentioned in the above post. This was done independently and isn't endorsed by anyone. If you do a similar experiment and get different results, let me know---more (well done) data is always better!




Sunday, August 24, 2014

Core Vocabulary with Booklets

I don't have time to write a big post about this, so here are the main points:

I'm focusing on doing more modeling at home, because modeling is the most important thing that I can do to help Maya become a proficient, active AAC user.

I'm focusing on core words, because core words work across many environments, build many sentences, and make up 80% of what we all say everyday. (80%!)  

I'm focusing on putting phrases and sentences together, because Maya knows the location of a ton of words in her talker, but doesn't often spontaneously make the leap to string them together.

I've decided to create some little booklets, pulling the bulk of the words from core word lists that I've found and dissected online (like here and here). This book is not to teach any concepts, but rather to practice, practice, practice using core words. The more I model them, and the more we use them together, the more likely she will be to use them on her own. Tonight I made the first booklet, about Parker and things that he likes to do. Here are some sample pages:






Core words. Motivating booklet. Done quickly, without getting hung up on graphics or art or perfect margins. 

Here's the booklet file  (as a word doc, which can be totally customized)---if you print and use it, you need to draw a picture for the bugs-under-a-car page. This will print two book pages per sheet of paper (cut and staple to make the book). I put the title & ending pages first so that I could print that sheet on cardstock (for a heavier "cover") and then print the rest on paper.

(If you start making core word booklets, please come share them!)

I'm looking forward to seeing what she thinks tomorrow, and to making more of these. (And I'm selfishly hoping that you guys will create some fun ones and share them here or in the Speak for Yourself Users Group!)

VIDEO UPDATE:

Here's what she thought. So many fun things here :)



1. This is our first time exploring the plural +s.

2. This highlights the need to have interesting, appropriate vocabulary available to the AAC user. Kids like potty words. All children should be able to say whatever they want to say, whenever they want to say it :)

3. She wants to open the book, I want her to communicate something. I use a combination of waiting and prompting. We are working on phrase building (which is why I push for more after she says "open").

Tuesday, August 19, 2014

First Day of School Resources

We still have a few weeks before we return to school in NYC, but I see a lot of folks are returning already. (My apologies if this is too late to make it for your very first day!) Sending a child with complex communication needs (aka a "nonverbal" child) carries a special level of stress . . . will the teachers understand her signals? Will they view negative behaviors simply as acting out, rather than deciphering the communication behind them? Will they move her talker away if there are too many things on her desk?

Here are some of the resources that I send in with Maya (if possible I also email this to teachers/therapists prior to the first day, but I also send hard copies in the backpack), along with a few other tips to help smooth the way into a new classroom.

First, she brings in a packet of information about herself. I try to keep it brief but informative (2-3 pages, well broken up into categories and spaced out). Enough so that the teachers can get a nice synopsis, but not so much that they won't flip through it. It speaks about her personality, her talker, my personal view on speech and academic goals, and pertinent medical and behavioral information. A sample document (with some omitted information) can be viewed here. 

Next, she brings in a folder that contains resources about her talker.


In the folder is information relating to her communication device. I include two copies of each item in the folder, one to remain in the office of the SLP, and one to be available in the classroom.





The contents of the folder are:

  • An information/programming guide about her app for staff. I don't actually want the staff adding or deleting words until I know them and am sure we're on the same page, so I don't provide that information. My guide also includes links to videos of Maya using her app at home, so that they can see what she is capable of. 
  • An app map, care of the Speak for Yourself team. That file can be found in the "files" tab of the Speak for Yourself users group on Facebook. I laminate these so that they can take a beating in the classroom without getting ripped or wet.


The image and text on the front of the folder are the same as the information that I include on the back of her talker:


This is the file for the above image.

Finally, Maya and I make a booklet together that she can bring to share with staff and classmates. Here are a few sample pages from this summer's booklet:




One thing that I can not overemphasize is VIDEO. If you have a child with complex communication needs, get video at home---video of using their device, talking, reading, showing off skills. It's much easier for staff to embrace high expectations and presume competence when they get a glimpse up front of the awesome things that our kids are capable of.





Monday, August 11, 2014

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."




Tuesday, August 5, 2014

A small heavy box

Maya got new splints yesterday. Splints? Braces? Orthotics? It doesn't much matter what you call them, they are shiny and new and Maya is Christmas-morning excited about them. They must feel good, the way they stabilize her unsteady ankles, because she is eager to put them on and proud to show them off.

Yesterday was a rush of a day . . . I picked her up early at school (which is where the splints had been delivered) to take her over to her first day of AAC camp (where I stayed and observed). After camp I rushed her home, where my pit crew (Dave and Will) were waiting on the sidewalk to make a trade: I released Maya to them, they gave me a sandwich and new vat of iced coffee, and then I hopped back in the car to drive to my night class. I didn't get to really look at the new splints until I arrived home after class, and as I opened the door and came into the apartment they were waiting to greet me on the countertop.


I picked them up and admired the straps, clean and white and new, though likely not for long. Soon the threads on the sides of the velcro will start to fray. The little white cushiony thing that prevents the strap from overtightening on her skin will become more progressively dull, then it will loosen, and then it will be lost (spoiler alert: they always get lost). The suede-y soft inner white cushion pads will stay soft, but lose some of the supple squishiness that they have this week. Newness aside, what struck me the most was the length: cut to extend a bit past her toes in the front, these seem huge! Are her feet really this big? Do these really fit Maya?

Maya's feet had been abnormally small for years, which we were told was a typical side effect of not being able to bear weight and stand and walk (which typically causes feet to spread and grow more rapidly). The sheer size of these splints seemed to say "look how far my feet have come, look how far I've come."

This morning I crept into Will's room, to the high shelf in his closet, and pulled down a small shoebox. If I could hand it to you, the shoebox would feel light enough that you would wonder if there was actually a pair of shoes in there . . . but in my hands, it is a heavy box. Small enough to hold with one hand, big enough to hold years of progress. Light enough to balance on a loaf of bread, heavy with the weight of our worries and wonders and yes-my-baby-wears-splints and she's-almost-three-and-no-not-walking-yet.

Made of light cardboard, strong enough to hold our past.



I remember every pair of splints in that box.



I remember the first pair. She was fitted for the first pair in a clinic, wiggling and unhappy and not at all interested . . . and I was hopeful and eager and thinking "maybe this will be the magic ticket!" Picking the bold pink straps . . . trying them on her at home, watching anxiously to notice a change. Not noticing a change. Keeping the faith. When she outgrew them, we took a little break, because it didn't seem like they mattered much anyway.

I remember the second pair. She was fitted at home and we poured over the choices in patterns. For my cow-obsessed girl, finding a pattern with barns and farm animals was perfect. These were a different type of splint, and I recognized cautious hope as it bubbled up in me . . . these might be the ones, after all. I popped most of those bubbles, but a few remained. They popped themselves as weeks turned to months.

I remember the third pair, which we were fitted for at her preschool. The orthotists were so friendly and her physical therapist was excited about a new pair. I was happy that Maya was happy. Again, we searched through pattern swatches and she squealed upon seeing a green rainforest pattern that had alligators (a big love at the time). I remember how quickly she learned to take these off in the car, and I remember countless white pads being lost during those undressings. I remember her love of the splints, the way she wanted them on in the morning, how I knew that they must actually feel good . . . maybe like the way my knee brace eases the pull and pain on my weak knee when I walk? I'm not sure. I wish I knew what it felt like to have her feet, what the splints feel like around her ankles. I wish she could tell me.

And now, again, we begin with the fourth pair. She is blissfully excited about the blue butterfly pattern and didn't want to take them off yesterday. Part of getting new splints is evaluating the fit, and I'm supposed to check if any parts of her feet look raw or red, but she wouldn't let me take them off to check. "Maya, how do they feel? Are they good or tight?" I asked. "Doh" (good) she replied, with wrinkled brow, the subtext being don't-try-to-take-them-off-I-said-they're-good. I love them because she loves them, and I hope that they make her more comfortable. She is delighted, and I am happy for her.

We need to pick up a bigger pair of sneakers, and then she'll be in them more or less full time until they become too small, at which time they'll go to the small heavy shoebox. And I wonder, years from now, when I pull out pair #4 with the butterflies, what memories they'll bring with them.



Friday, July 25, 2014

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.




Thursday, July 24, 2014

They Said She Wasn't Ready (four times)

This post tells of the obstacles that we faced when we decided to pursue high tech AAC for Maya, and the ways that it has shaped her academic path. Some of it is kind of a review, but there's a great new video at the bottom, too. This relates directly to the (amazing) "Myth of AAC Pre-Requisite Skills" blog post that circulated earlier this week.



Maya and mini

My introduction to AAC came in a support group meeting (for parents of kids with special needs). I was talking about how I really didn’t know what Maya knew, or understood, and how I wish I could find a way for her to communicate. One of the moderators said “You should go see Mark, he does assistive tech” and the other nodded and agreed, and that night I went home and started researching and was blown away by the different systems and devices (and a very small number of apps) that were out there: a whole world that I didn’t know about.  

That was a kind of pre-obstacle in our path to obtaining AAC: no one told us about it. Too many parents are left on their own, with a passing suggestion or random message board encounter being their best chance at learning about AAC in the years-before-elementary school.

The first real obstacle, for us, was Maya’s age. She was 2 when we started pursuing AAC at home, 3 when we pushed for a DOE evaluation (useless) at her special needs preschool, and still 3 when the first app with truly accessible, long term language possibilities (that could work for a preschooler and grow with her through adulthood) burst onto the market.  We believed that she could handle a big system, despite the DOE evaluator’s insistence that that was the wrong choice.  Her teacher sided with us, and we decided that it was best to ignore the DOE (who had recommended a boring, static, cumbersome, only-able-to-hold-32-words device) entirely.

The second obstacle was Maya’s fine motor skills. Namely, that she had very little fine motor skills. At 6 years old, she still can’t hold a pencil correctly and write letters, or use scissors. She doesn’t have the hand strength to open a clothespin or to re-cap a marker. The idea that we wanted to put her on a dynamic screen of any type didn’t compute with the evaluators (“But how will she use this? You can see that she would have a lot of trouble hitting those buttons, or not hitting others accidentally.”). I mentioned a keyguard, which was acknowledged as possible, but the team seemed much more comfortable with the idea of starting with a few big buttons and working up to more and more (and shifting the vocabulary entirely around at each step). Apparently motor planning is a foreign concept in some circles. I was sure that if we could get our hands on the right system, we could think creatively and come up with ways to improve our direct access. (Spoiler: That’s exactly what we did, first with a glove and then a keyguard and then another keyguard.)

The third obstacle was Maya’s cognitive level. While her cognitive evaluation (which placed her in the bottom 0.04th percentile of her same-age peers) seemed laughable to us, and to her teacher, it was a clear data point for an evaluation team. And if 99.96% of three year olds are smarter than Maya, and they’ve never given a large AAC device to any three year old, then you can go ahead and bet that my kid won’t be the one breaking that streak.

Next, and perhaps most significantly (and frustratingly) came the biggest obstacle: negative behaviors. Maya is stubborn. She is willful. She is interested in doing only the things that she is really interested in doing, and it’s very difficult to coerce any sort of obedience or compliance if you are new to her (and “new to her” can mean that you starting working with her less than 6 months ago, more or less). She would not “perform” during the AAC evaluations. She would not show them what she could do (and, in a mindboggling twist, the team declined to view the extensive videos that I have of her independently using a communication book and apps). That led them to decide she wasn’t eligible for a big device with the reasoning that either she didn’t understand what they were saying enough to make sense of the device, or she wasn’t interested in it anyway.

Four big “reasons” that she wasn’t ready for high tech AAC. 

Four excuses that we ignored.

Instead of figuring out ways to clear the hurdles that they had laid before us, we walked away from their obstacle course and did it on our own.  (Not because we were heroic, but because hurdles are exhausting.)

We pursued AAC early and doggedly, because Maya had a right to say whatever was on her mind, whenever she wanted. No low tech system could provide her with that, so high tech was the only option, as I saw it. We were excited as she became able to request favorite objects, to make little jokes, to talk about the weather. We were delighted when she was able to come home from school and tell us who she played with, or what therapy she had, or what songs they sang that day.  But it wasn’t until a few months later, as we went through the “Turning 5 Process”, that we realized how fundamentally Maya’s early access to AAC was going to change her life.

“Turning 5” is the process in NYC through which children with special needs are re-evaluated and then matched with a school, and classroom, that fits the child. I am certain that without her talker, Maya would have been sent to a classroom that had very low academic expectations, and I witnessed this near-miss happen five or six times. This story, from a former blog post, describes those encounters:

During this process we were sent (by the DOE) to tour many schools, some of which requested that Maya also attend the tour.  We toured the facilities, heard about class sizes, and visited potential classrooms. The school personnel 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.  But when we returned to their offices, 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

Now Maya is 6 years old. She is starting a new year, in a new classroom, in a new school.  She is still stubborn, and the new team is slowly teasing apart what she knows and what she doesn’t know---which is, to varying degrees, a mystery to us all. Again, AAC is the game changer here, the light that helps illuminate some of her more surprising strengths. She is reading, although it’s hard to discern how much she reads, because her speech is still so amorphous. If a skeptic listened to Maya read, they could easily say “Well, that might not really be reading. I mean, I hear the starting sound, but who knows if she’s really saying the correct word? She might be saying ‘fish’ instead of ‘first.’” But when she uses her talker, it’s clear.  In this video she reads two sentences with her voice, and then I prompt her to read it with her talker, to check that she was actually reading the correct words.



She’s reading. The DOE said she was in the 0.04th cognitive percentile, and I'm sure that they would not have placed a kid in the 0.04th percentile on a track to be reading when she is five.They might not think that a kid who will lay on the floor instead of following directions is actually listening and learning, and no one would know that without the data that the talker provides.

AAC has given Maya a way to request and comment and give directions to those around her, and a way to tell me about things she sees and hears when I’m not around. And, in an unexpected (and surprisingly essential way) it’s given her the power to prove to the doubters, the nonbelievers, the skeptics and cynics and those who forget to presume competence, that a child who in unique and complicated and doesn’t always look like she’s learning may actually be quite clever, and capable of learning whatever you throw her way.


If you are new here and interested in learning more about AAC, please head over to this page, which is a great jumping off point.



Friday, May 16, 2014

The Limitations of Sign Language for Children With Speech Delays

Once upon a time, when Maya was little (a few months old) we started signing with her. Not because she had special needs, but because many people use sign language with little kids, who are often able to produce expressive signs before they can produce the same words verbally. We waited months for her to start signing back, which she eventually did---much to our delight! She learned many signs in the months (all the way up until she was 2.5, I think) that followed, we used baby sign language dvds, I even made a "Maya Sign Language" video dictionary that I sent to her preschool teachers so that they would understand her. Signing was great, because without it we would have had no way for her to communicate with us and her teachers. 

I look at that paragraph now and all of the shortcomings of sign language jump out at me (it took months for her expressive signs to come, she only learned dozens-not hundreds-of signs, despite having expressive signs I still had to make a translation video for her school staff to understand her). And before I start discussing the limitations of sign language for kids with speech delays, I need to be clear about a few things. Here are my disclaimers: First, ASL (American Sign Language) is an absolutely beautiful, complete language. For families who are a part of the Deaf community, ASL makes complete sense. This article is completely irrelevant to that experience. Second, I think it is valid for children to learn sign language, and I think sign language can be a great component of communication. I'll get to where it fits in below. 

But children who are slow to develop language, who have "speech delays", who have "complex communication needs", who are "nonverbal", who have apraxia/dyspraxia/oral motor planning difficulties, who have CP or autism or genetic syndromes, children who will NOT be attending a school for the deaf or supported in the Deaf community----these children should not rely on sign language as an alternative method of communication. 

Here's why:

1. Most people don't understand sign language. Children need to be able to speak to EVERYONE they meet (well, if they want to). Grandparents, cousins, the guy who works at the deli that you go to on Thursdays, their bus driver, the secretary at their school, the kid that he just met at the playground who has Spider-Man on his shirt, the nurse in the doctor's office, the doctor, the grandparents of a friend at a birthday party, the lady in front of you in the Starbucks line who is asking about whether she likes the movie Frozen, the teacher, the substitute teacher, the gym teacher. These people do not all understand sign language. Which leads to . . . 

2. A child should not need to rely on a translator. (Even if that translator is you, and you are awesome.) Here's why: it forces them into the backseat of their own conversations. Imagine if you went out with your spouse (or best friend) and every time someone spoke to you, you signed and your partner had to speak back for you. You're one-step-removed. Kids who are struggling with language issues, who are learning the ebb and flow of conversation, need to be empowered with a way to speak up, to step in to conversation, to join. (Passivity is a big personality trait that develops among kids who have speech delays---they're used to other people speaking for them. As a side note, the other big trait is anger/tantrums because they have no other ways to get their points across, and behavior becomes their method of communicating.) On top of that, our kids (who often have multiple challenges) are already shadowed by their parents enough. I didn't want to have to be all up in every conversation that Maya ever has.

3. Fine motor issues lead to garbled signs. Maya does not have the dexterity to move her fingers in ways that would allow for the clean, clear formation of the vast majority of signs (hence the "Maya Sign Language" translation video---even people who speak fluent ASL wouldn't understand her signs). Teaching sign language to nonverbal children with fine motor issues as their primary means of communication is basically spending hours helping them learn a language that effectively no one (besides you and your child) speaks. It doesn't make sense.

4. I think that AAC is faster to learn than sign. (Please note the "I think", as this one is totally anecdotal.) I learned ASL alongside of Maya, and then I learned to be an AAC user alongside of Maya. AAC is, in our experience, much faster. I wondered if this was because Maya's motor challenges make it difficult for her to execute new movements, but then I realized that I'm able to learn words via AAC more quickly as well. Her app can hold over 13,000 words. I don't think I would be able to remember that many signs. 

Will (19 months) is learning to speak. He is also learning sign language. He is also learning AAC. This type of multimodal whole-language approach is, I believe, where ASL fits appropriately for children who have complex communication needs. It's great to have a child who has multiple ways of communicating, and there's no downside to teaching ASL in conjunction with using a more-universally-understood AAC device/app.  But, in my mind, the AAC is not optional. 

See for yourself:




The criticism: Here are the most common complaints that I hear from people when I share my thoughts on the limitations of signing:

1. Signing is better because kids always have their hands with them, you don't need a cumbersome binder of cards or an iPad. And what about places like the bathtub where a kid can't have an iPad anyway? Maya's iPad mini isn't cumbersome, and there are several option now (like a waterproof electronics camping bag) that would make it fully submersible in a bathtub. But that's totally beside the point, because signing is great for you to use with your kid----as long as you're also providing them with a way to communicate with the non-signing population.

2. My child loves sign language and has learned over 200 signs! That's so great! But most 3 year olds already speak over 200 words, and by age 4 we're well into the thousands. That's a lot more than 200. Keep signing but make sure there is another way for her to express the thousands of words that she likely understands but does not know how to sign.

3. It's his choice to use sign language. I'm certainly not going to argue with the choice of a child who has communication challenges. Obviously, how he communicates will be his choice. But (in my humble opinion) he needs consistent exposure to multiple modes of communication. My kid is going through a cartoon phase and has gained buttons in her device for nearly 100 characters in the past few weeks----it's all that she talks about, to anyone who listens. She would never be able to learn and imitate this many signs this quickly, and no one that she spoke to would know the obscure signs for "Jiminy Cricket" or "Handy Manny" or whatever. I think that multiple modes should be taught and encouraged, and the child can use a combination of them to get their points across to a diverse field of communication partners.

Our kids with complex communication needs need the same early access to AAC that many of them have to sign language. Sign language is a great component of multimodal communication, but without an AAC option that can be universally understood we are limiting their ability to independently interact with peers, family, friends, and professionals.