Friday, October 14, 2011

How we talk with our (mostly) nonverbal girl

This is an unedited, not-at-all-set-up photo of what my coffee table looked like this morning. 


That's why there hasn't been a post in a few days . . . I'm nearly totally consumed with Project Communication.  (And the little part of me that wasn't consumed with communicating was actually doing a bit of consulting work, so no free time at all.)  So, it's fitting that I'm here writing another communication-centric post.

Last week I was talking on the phone to a friend, retelling events from the day.  I mentioned Maya's Word Book, and said something like " . . .and then all day she kept saying "library! library!"  My friend replied "Oh my gosh, that's so amazing!!!", which left me puzzled.  It was, after all, more amusing than amazing. Then I realized that she thought Maya was literally saying "library".  I explained that I meant she was "saying" it with the picture card, and then I thought a lot about how Maya "talks" to us.

If you have a child that talks, you probably take a lot of communication stuff for granted.  For us, communication is something we're always working on.  I'm envious of a mom who can call "What do you want for lunch?" over her shoulder and listens for her child to shout an answer from the other room.  For us, talking is deliberate, requiring proximity and props.  Thankfully, most of the time it's pretty easy to understand Maya--she knows what she wants, what cracks her up, and what she likes, and she'll keep trying to "tell" you until you guess correctly (or she gets frustrated and cries,  which is the the saddest part about a kid who can't talk).

To that end, here are some of the ways that we communicate with our (mostly) nonverbal girl.  (Did you see on Facebook that her vocabulary has doubled?  Now she's got "bye" "done" "mama" and "dada"!)  A lot of it is common sensical, but may illuminate things a little bit for readers with "typical" kids who wonder how parents communicate with nonverbal kids.

Note: Maya's receptive language is, without a doubt, one of her biggest strengths.  Because she's able to understand everything with say, I do not need to sign or present picture cards for her to understand what I'm saying.  Also, she has high communicative intent (she wants to tell us what's on her mind), which is also very helpful as we work together to help her express her thoughts.

1. The most basic, oh-so-simple stuff 
  • First of all, we ask a lot of yes or no questions.  She can nod or shake her head, and make small yes ("eh") and no ("nnn") sounds. 
  • We present her with choices (foods, for example) and she can pick one.
  • We ask her questions and show her how to show us her answer Ex. "Maya, do you want to play in the living room (pointing towards living room) or your bedroom (pointing towards bedroom)?"  Then, she'll point to show us.
  • We still use signing.  The problem with signing is that we understand her signs, but they are kind of garbled . . . which is why we made the MSL (Maya Sign Language) translation video for her teachers.
  • We understand her sounds.   "mmm" means, like, 17 different things, depending on context.  Sometimes we have to guess a few times, but she's (mostly) patient.

2. Low tech stuff
  • Paper & pencil (or wipe board & dry erase marker):  This is great for choices on-the-fly, and works on word recognition as well.  Maya isn't currently reading, but if I tell her the words that I've written down, she will remember and choose.  (It's tricky to explain, see the video below)
  • Hands: Even lower tech the paper & pencil, I use this when I want her to make a choice and I don't have any pictures or paper with me.  Check this out in the video, as well:


  • Picture cards (first made with photos, now with BoardMaker symbols) are really helpful.  When presented with a large field of choices, Maya will work to search for something that she wants, or something that she wants to say, and will give it to us.  We started with just a few cards to make choices with, and now are moving our way up to a full communication book (which explains that picture of my coffee table.  I've been staying up late to make more and more words for her). 
3, High tech stuff
  • iPad & Proloquo2Go:  As mentioned a few months ago, Maya has an iPad and an app called Proloquo2Go.  P2G is great, but the iPad is cumbersome.  To truly use P2G effectively, Maya will need to learn to navigate through folders with the touchscreen, tapping and sliding her finger to do so.  Right now, those motor skills are challenging and distracting enough to discourage its use (although we do have a stylus that sometimes helps with tapping buttons).  This week Maya will start using the iPad at school during mealtimes only (so she won't have to navigate through screens) and use the Word Book the rest of the time.  Hopefully she'll slowly adapt to the iPad and we'll use it more and more.  The biggest benefit is that it literally has a voice---she lights up when she hears it say what she's thinking :)
  • Other devices:  We have submitted paperwork that will give Maya an assistive tech evaluation, so we can see if any other devices would be a good fit for her right now.

So, that about sums it up.  Even though she doesn't talk, she actually communicates very clearly (to us, anyway). 

It's very exciting to see her eagerness to communicate, and I'm anxious to see how far she's come in a few months.  Trying to launch the Word Book and iPad simultaneously is nearly drowning me (especially after 1.5 hrs at the Apple store yesterday, and then a 2.5 hour upgrade/redownload/restore process last night), but it will be good.  Maya will show us what works best, it's just a matter of being patient and determined and teaching her both systems, so that we can follow her lead.

In totally unrelated news, here is the cutest art project ever (she brought it home today):

Those jungle animals are made from her handprints!  This could not be cuter.

6 comments:

Joanne said...

That is some cute art project! I am glad to hear it's going so well and I am mad jealous of your progress.

I've got the lemons said...

While P is verbal now after 10 months of ST (I know this is nothing compared to what you & Mya have been through) I so remember the days where she would scream bloody murder when I couldn't figure out what she wanted/needed.

Her receptive was always great, but her expressive was, for lack of a better word null. She was on a 9 month level and had virtually no real words, or babble.

I didn't really even realize how far behind she was, at first.

I love how you've set up her board & literally put your heart and soul into it.

Speech aside, that is THE absolute cutest art project, EVER!!!

The more I hear about the ipads for SN kids the more inclined I get to look into them

Jenny said...

Thank you for this post! My 2 1/2 year old son has cerebral palsy and is currently non-verbal. It is my hope that he will be able to speak one day. I do some of the things that you mentioned in your post like offering him choices (for food and books). He will now crawl to the book shelf all by himself and pick out a book (he picks Pajama Time by Sandra Boynton every time :-) ) Anyway I really love your other ideas such as using pen and paper and your hands. Thanks so much for the ideas!! PS. I love your blog and your daughter is brilliant!

Cheryl (in Buffalo) said...

I LOVE the handprint zoo!!! I just emailed myself the idea at work so I can do it with my students!! And, I know Mya will be appropriate and eligible for a communication device. She is so bright and eager. She is a perfect candidate for augmentative communication...and, while you are doing a great job of providing things for her, she needs to have the most high tech stuff she can to allow her to blossom!! I'll be anxious to see what the evaluators recommend!

By the way...Did you see all the different games and programs you can try free for a week on the boardmaker sight? I LOVE a lot of them! If you need details, feel free to email me :)

mamacarlson09 said...

That is awesome! It really makes me think about creating a word book for my son. He has tons of word approximations, but it is so hard to understand what he's saying unless he's pointing at what he wants. It's hard playing 20 questions every time he says something. I know he gets frustrated too. Where did you get the BoardMaker program?

Dana said...

I haven't checked out the free boardmaker stuff---is it just on Boardmaker.com?

You can buy BoardMaker online, it's kind of pricy, but I lucked out getting it from a friend who bought it and never opened it.