Thursday, November 15, 2012

Tailspin (and 3 Deadly AAC Sins)

It's been a rough few weeks for Maya.

Her brother was born, which kind of shook up her whole little world.  Dave was home for two weeks on paternity leave, a dream come true for a daddy's girl (poor dear is still shocked and saddened every day when the school bus pulls up at home and Daddy isn't waiting for her).  Then Hurricane Sandy hit, giving Maya a week off of school (and another week off for Daddy, too).  Her bus was damaged in the hurricane, so for the next week Will & I were driving her to and from school.  Also, with no busing to rely on, only half of her class attended school that week (and the teacher said that she would walk to the cubbies of the absent kids and point and cry---how sad is that?).  It's been a very inconsistent time, and preschoolers typically do best with consistency.

When times get tough, Maya gets tough back.

And not in a go-get-'em! way, in a boy-you-know-how-to-push-our-buttons way.

Her stubbornness is unparalleled (except maybe by mine).  And truthfully, I kind of like it*---she's going to need to be strong and willful and fight for herself. 

*Except when she uses it against me, because then I want to force her into a polite-direction-following-cheerful-girl.

In the past two weeks Maya has willfully decided not to do many things that I ask her to do.  (Cleaning up toys, not opening the dvd cases, etc.)  I've tried commanding, tried bargaining, tried time-outs, tried taking things away, and finally settled into a pattern that seems to be working for us. 

But there was one problem that I couldn't solve: Maya and the talker.

She had started to refuse to use the talker.  It made me hold my breath, watching her push it away.  Her version of the silent treatment?  Maybe.  It seemed like she wanted me to do the talking for her---she would even grab my hand and try to push the buttons with my finger.  If I pulled my hand away and walked away from her, she would just stop trying.  Possibly she would throw something, if anything handy was in arms reach.

For 3.5 years I had to talk for her.  And now she has a voice, albeit one that she is still learning to use, and was rejecting it.  This was not an area that I could allow to be overrun by stubbornness.  I needed to find a way to fix it.

And so I promptly set about doing everything wrong. 

Not intentionally, mind you, but you know how sometimes when you're really in a problem you can't see solutions, even an obvious ones?  Well, add a needy infant and sleepless nights and . . . .well, I guess I just didn't have my head in the game.  So I want to share three of the mistakes I was making . . . not because I like to brag about my mistakes, but because I think these are probably the three most common mistakes that communication partners make with nonverbal children.  So, here you go, learn from my mistakes:

3 Deadly AAC Sins That I've Committed This Month:

1. Commanding her to say something. 

Example: Maya points at the refrigerator and says Sssss (juice).  I reply, You want juice?  Ok, tell me with the talker.  Maya gets mad.  I realize my mistake, but I've already told her to say it with the talker and don't know how to take that back.  Now we're in a stand-off, she is juice-less, and we spiral into an unhappy tailspin.

Why it's not a good idea: How would you feel if you went to a restaurant, pointed at the menu to order, and the waitress said You want a cheeseburger? Ok, tell me with your words.  I guarantee you that my reaction would likely not be to ask for a cheeseburger in a polite sentence.  It would probably be some sort of are-you-joking look with a raised eyebrow as I thought Listen lady, you know exactly what I want.  And I'll bet that's what Maya was thinking, too. 

What I should have done instead: As I see it, there are two courses of action that are better than this:
  • Encourage the vocalization by saying Are you asking for juice?  Juice starts with a J.  J-j-juice.  Can you say j-j-j?  (She's likely to play along with this, she's constantly encouraged to make new sounds and wouldn't see this as forcing her to ask again, just as practicing sounds)  Great job! Here's your juice. 
  • Encourage the AAC by acting like I don't understand.*  Maya, I see you want something but I don't know what you're saying.  Do you want to use the talker to tell me?  At that point she can choose to use the talker or choose to get angry, but I have told her that I don't understand, so if she doesn't use the talker she won't get the juice by default. 
*I pretend to be clueless a lot.  Pretending not to understand might be the third most important thing that I can do for my nonverbal child (number 2 and number 1 are coming below). If you feel mean doing it, like your child knows that you understand and it's mean to pretend not to, then think about this:  The rest of the world won't understand him/her nearly as well as you do.  Sometimes you'll have to make your kid angry in the name of the greater good---forcing a type of communication that other people (teachers, classmates, friends, family members, etc) will understand. 

2. Giving her words

Example: Maya walks into the kitchen and stands by the freezer.  I say Do you want a waffle for breakfast? and she replies Yeah.

Why it's not a good idea: I shouldn't be trying to read her mind, for two reasons.  First, I might be wrong.  It's kind of egotistical to assume that I know what she wants when she goes to the freezer.  Maybe she wanted to tell me about something cold.  Maybe she just was wandering in the kitchen.  Second, me talking for her isn't doing her any favors (see the * above).  The world will not be able to read her mind.  She needs to learn to speak up for herself, and to practice doing it as much as possible.

What I should have done instead: Say nothing, act clueless.  Possibly put the talker on the floor in front of her, acknowledging that I think she might want to say something and so I'm going to make her talker available if she needs it.  Wait and wait and wait . . . and wait.**  If she decides to ask for a waffle, great.  If not, life moves on---even if on the inside I'm thinking oh man, I know she wants a waffle and she must be getting hungry and maybe I should help her out.  The world will not "help her out."  She needs to speak for herself.

**Waiting might just be the number two most important thing for the parent of a nonverbal child to do.  We're all used to conversation moving fast, fast, fast, but AAC takes time.  And for someone just learning to use AAC, it takes even longer.  Time to decide to use the device, to move towards it, to turn it on, to remember what you want to say, to remember where to find the word, to navigate to it, etc.

3. Not modeling
Example: Maya uses the talker to say Molly and I reply (verbally) Molly is your friend or Is Molly your friend? or Molly is so funny or some other sentence about Molly.

Why it's not a good idea: So many reasons.  1. I'm supplying most of the conversation. 2. I have no idea what she wants to say about Molly, I'm just saying random things. 3. If I'm not using Maya's talker to model what I'm saying, there's no way that she's going to learn to say any of it. 

What I should have done instead:  Two choices:
  • After Maya says Molly I could reply What do you want to say about Molly? and then just wait.  (If, after waiting a long time, you get no response, I would move on to the next option)
  • If I choose to reply after Maya says Molly I must model what I am hoping she will learn.  Modeling is, without a doubt, the most important thing that a communication partner can do with an AAC learner.  Think of it like this:  If you were learning a second language, but you didn't know anyone who speaks that language, the learning would be very slow . . . you might try to use the new language, but no one practicing with you.  On the other hand, if you go to a foreign country and surround yourself with speakers of the new language, you will learn in a much faster, more meaningful way.  I have to speak Maya's language as much as possible.  So I should have said Molly (push button for Molly) is (push button for is) funny (push button for funny).
How could I possibly expect her to learn to speak in sentences*** if I'm not showing her how to?

***If you're child isn't trying out sentence yet, just model one step above what they are currently doing.  If they are only tapping one word on their system, you can model two-word combinations, etc.

For the record, I am usually a good modeler.  I kind of fell off the wagon because I was spending so much time nursing Will and couldn't get to the talker.  Last week as Maya and I were butting heads over communication, I re-realized that the best way to get results from her isn't confrontation---it's enticement.  I decided to quit trying to make her use the talker, and just stuck to playing dumb (I have no idea what you're saying . . . do you want to try using the talker to tell me?) and modeling (in a very casual way, like I couldn't care less that she wasn't using it, but I would just keep using it because it was so fun. Even though on the inside I was fuming a little.).

Sure enough, after a few days (a few days that felt kind of long and painful), we had this exchange:

Maya (via talker): Molly

Me (verbally): What do you want to tell me about Molly?

Maya (via talker): My friend.  Jake.

Me: What do you want to tell me about Jake?

Maya (via talker): My friend.

"Molly my friend. Jake my friend."
This was after a day in which I had modeled several "Sally is my friend" type sentences. I truly didn't realize that she was even paying close attention when I modeled them the day before.
Stubborn or not, I know that Maya wants to communicate, and learns new things so quickly if I can entice her into paying attention, rather than end up butting heads.  So I'll save the stand-offs for other battles, like picking up toys, and try to just stick with acting clueless and modeling.  (Even if at times I am screaming Just use the talker!  I know that you want juice and if you would just say it with the stupid talker instead of crying stubbornly we would all be much happier! in my head.)
Disclaimer: I am, as always, not a speech therapist or AAC professional.  The stuff above is my non-professional-but-pretty-well-researched opinion.  If you are an SLP or ATP and would like to share insight, tips, or opinions (even if you're going to tell me I'm doing it all wrong) please leave a comment below! 
Other information: Maya uses an iPad and the Speak for Yourself app to communicate.  You can read more about our communication journey here.


Anonymous said...

Maya and Raegan seem to have the same personality. She doesn't like her world to be upset either- it stresses her out and causes her to turn into what we call the "grouchy ladybug". Poor Maya had a lot of change dumped in her lap all at once :( But anyway, just thought I would share/commiserate with you on the mommy end. Even though Raegan is verbal, so many of our frustrations are the same- which is one reason I love reading your blog, it shows I am not alone! :)


Anonymous said...

Harmony is not close to Maya's skill with communicating (yet, I hope), but I still have much I can learn from your insights here. I do so much "handing it to her on a platter", I really need to push her just a bit to communicate back to me. And my biggest takeaway here is the point that I need to be patient with her. For Harmony especially there is a big delay in processing, and you are right that adult conversations happen in a flash. This is a good reminder for me to slow down and give her a chance to communicate back with me as she is able. Thanks, as always!

Anonymous said...

This has so much helpful information and I constantly need to be reminded to model because I'm just lazy sometimes. So, thanks for that. And go Maya for being stubborn, except not when mommy is tired and nursing!

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