Monday, July 15, 2013

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.


C said...

Great post!

Brielle and Me: Our Journey said...

This is SO true! I find the same thing with my 17yo daughter who is fluent in sign language but also uses a communication device. Interestingly enough, it happens with BOTH modes of communication. My 17yo gets lazy and doesn't use full sentences. I let her get away with it too often and make WAY too many assumptions. Thanks for the reminder!

Three of Cups said...

I never realized how often I have done that! Thanks!

Thara said...

I agree. My child is different, she is completely non verbal. I take the time to find out what she wants- it is not easy but that doesnt matter.

Like you, I also got a iPad after Abby's ST recommended it. It made communicating with her so much easier.

P.S Does your daughter have cerebral palsy? And, I love your post, it is brilliantly written, Dana!

Run Amy Run said...

This is so spot on! I can only relate this to my experience with parents of deaf children who use sign language. If the parents limit themselves to learning just the basic signs (and don't go beyond nouns, for example), they're limiting their communication with their child as well as not enriching and expanding their communication and their child's linguistic repertoire.

Sophie's Trains said...

I love this post, I totally agree. I worry often about the very thing (too often). The thing is, my daughter is 3, we started using PECs recently and she does like to use it to request stuff. I'm still kind of fumbling on how to move past requesting and more to actual conversing...
I find your blog very helpful at this point in our journey- thanks.

Rebecca said...

What an awesome post! It definitely made me evaluate how I communicate with my 17 month old. Thanks!

Anonymous said...

I totally agree-- but I'm afraid my nonverbal 16 year old doesn't! After years of struggle we finally got her an eye gaze device with core word systems, etc, about 2 years ago. (It's her only option- she has essentially no hand use) After an initial burst of enthusiasm, she is just not interested at all in using it. I think she's quite mad at me for NOT reading her mind. I tell her constantly that I can't read her mind-- I could when she was a baby, but babies don't know about all the things she does-- I can't guess what's on a teenager's mind. But she just gives me a dirty look. And she's so stubborn that if I'm trying to play dumb, and I don't give her what I'm pretty sure she wants, but i leave her device sitting right there, hoping she will use it, she will just go to sleep rather than help me out with words! Sometimes I have to drop back to the simplest levels-- two choices, or yes/no. And even then, she often gives me "The look" and then answers yes to everything. Yes is the escape word- if she answers yes, it might be the end of the conversation! I keep trying to model, but it IS hard to drag it around everywhere-- it's quite heavy, and hard to set up and position-- so I get lazy. She doesn't miss it. I know she can do it and I won't give up, but m truly at a loss as to what to do about reluctance/lack of interest. I thought the tough part was over when I actually succeeded in getting the device-- now it seems that was the easy part. I get discouraged knowing that many kids just start in the first day, and make progress, while we go nowhere. I feel like I've got a $20,000 doorstop!

Emma said...

Good reminders and tips. Thank you!

Anonymous said...

Great post.
I also think it is important to use AAC at home because my son will eventually develop fluency, increase his vocabulary and gain confidence. Plus, I'm showing him that he can be heard when he uses his speech app.

Beth said...

It isn't only limiting not to push communication... it's dangerous. Say a child cries and plucks at her trousers. Sure, it could mean 'my label is itchy' or 'my leg hurts' or 'my nappy (diaper) needs changing'. But, and God forbid, it could also mean 'X took me away and did something inappropriate and hurt me'.

(my son was nonverbal for a while and this was my greatest fear, that something bad would happen to him and he wouldn't be able to tell me. I'm sure this is what others fear too. Sorry to be so depressing.)

Anyway, it is so, so important.

MyBlogHasNoName said...

what a great read!! My son is being evaluated for a device this week, and we are SO EXCITED to start using it!!

Unknown said...

Brilliant post, great tips and a really powerful reminder of the importance of AAC - and using it consistently. My 2yo son is now using a PODD and it's been pretty interesting realising that I'm not quite the mind reader I thought I was! Plus it's opened up a whole new set of dialogue between us beyond just what he wants to eat/play with at any given time.

Cathy Ballou Mealey said...

I wish an SLP had pointed me to a post like this earlier in life.

"The quality of my response" is EXACTLY what I should have been thinking about, as well as the expectant waiting for more...

Unknown said...

Great post and thank you for all the rest, which I am only just getting into. My wife and I are just starting the journey with our 2yo son who has... something, and is delayed at least. Your blog is (and you are) inspiring, helpful and invaluable imo. Thank you again, Don

Anonymous said...

Wonderful post!!! I will definitely be sharing it with others!!

Casey said...

I'd love the opportunity to offer some suggestions. Over simplifying can also be a roadblock to children/teens/adults having motivation to practice AAC. Yes and No are the most unreliable answers, in my experience, yet they are often our "go to" choices. Visit Optimal Rhythms on Facebook or online. Let's chat and brainstorm some things to try!

frencieoswald jennistontaxton said...
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