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.

If you want a job partially done, I'm your girl

A realization hit me like a lightening bolt this morning, as I thought about my massive "To Do" list while I ate my breakfast:  I'm great at project preparation, or even project progression, but I suck at project completion.

I read this week's lecture for my writing class, took notes, looked at the homework assignment and thought about it (but didn't actually do the homework).

Then, I thought about my first big writing assignment (due in a week-ish), picked a topic, sketched a rough outline and took down some notes (but didn't actually start writing the paper yet). 

Then, I decided that it was time to make some communication boards for Maya.  I have BoardMaker, but had decided not to make boards until I saw the format that they were going to use at school (so that I could learn from them and stay somewhat consistent).  They sent home a sample board last week, so I thought I should make some. I was ready to go!  Except I had to find the cd first . . . sigh. 

I'll admit it---the misplaced cd was nearly enough to make me give up on this project. 

Why?  I don't know.  Sometimes I feel like there's always so-much-more-that-could-be-done . . . so much that it's easier to just say "Oh well, I can't do this all, so I may as well just take a break".  Like I spend so much mental strength thinking about the steps to do projects that I'm left without enough energy to actually get up and do them.  But today I was determined, and I set off searching for the dvd, while pondering my all-to-often readiness to (temporarily) abandon a project that a takes a turn for the difficult ("temporary" abandonment can last for hours, days, or weeks, by the way).

I started searching in the back of my desk and found this . . .

This is a small notebook that I bought when Maya started therapy.  The therapists would come and work with her, and I would sit on the floor and take furious notes so that I could replicate the exercises when they were gone.  The first 20 pages are full, and then empty.  Again, I'm a great project starter, but my follow through?  It's just 'eh'. 

The notebook itself is a perfect example of my project preparation---I got the ideal notebook to take notes in, but stopped after a few weeks.  I got the BoardMaker cd, but haven't made boards yet.  I set up my awesome computer writing station, but haven't done the real writing yet.

I got canvases and paint to make art for the kitchen, and . . . well, take a look:

A solid start (one completed painting), fizzling effort (a 3/4 complete painting), and a blank canvas.  Sigh.

After a brief pause to take the pictures you just saw and clear out a drawer in the coffee table, I found the cd!  Installed it on my computer, opened it up . . . and realized that I had no idea how the heck to use BoardMaker.  Oh brother.  On another day, I would have given up (again)---but today is a day of detemination!  I found some tutorials and watched them (for 57 minutes, I might add).  I learned the basics.

And, finally, after three different restarts, I made a board.

Maya's special instructor is coming by today, and I'm going to go over it with her (she's a BoardMaker pro) and see what I need to modify.  I'm going to send the board to school with her tomorrow to get feedback from the teachers.  I'm sure I'll have to redo it, but at least I did it.

I think sometimes it's the subconscious fear of not doing things perfectly that keeps me paralyzed from making progress.  It's hard to put the paint on the canvas (or the words on the paper, or the buttons on the communication boards) because, odds are, I'll look at it later and think "Argh.  I could have done that better".  But I'm starting to learn that sometimes any painting, flaws and all, is better than a blank canvas.