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.

Allow me to translate . . .

If you want to learn how to speak MSL (that's Maya Sign Language, a lesser known dialect of ASL) then all you have to do is watch this handy dandy translation video.  I made it for her preschool teacher (she starts on Thursday!  Only a few days left!) and thought I'd share it here, too. 





In other news, tomorrow brings us back to the geneticist to run a new test for a syndrome that's been on my radar for a while now.  I've been meaning to write about what that's like (from researching syndromes to waiting for test results) but this whole about-to-start-preschool thing is consuming right now. 

Soon.

Another little milestone

We took this video this morning, immediately after breakfast, hence the snazzy attire.




(That's how she signs "play".)

It figures that the first word she recognizes (besides her name) is play :)  Our girl is so smart!

Our day in cell phone video clips

(As always, if you see blank areas with play arrows under them, just click the play arrow and the video will pop in.)

We're experiencing a little developmental boom over here.  I've seen it before---a bunch of new skills suddenly show up.  Sometimes they stick (like signing) and sometimes they disappear again only to come back later (remember when she first pulled to stand for a few days, and then quit and didn't do it again until like 4 months later?).   But I'm soaking it all up while it lasts. 

Besides the walking-with-the-stroller development (which is huge, huge, huge and appears to be sticking around for real), she's starting to chatter away a lot more.  She spend half the day babbling to me, Parker, her toys . . . I can hear her now talking to something in her crib (no joke).  Here we are, talking in the laundry room:


0:02-0:05 She signs "more"  (her version of it, anyway.  Kids who sign modify their signs, the same way a toddler might say "lello" instead of "yellow".  They get more refined over time).  Then she just is chatting away :)


She's a champion block stacker:



At 0:34 when I say "knock it over" I initially didn't know why she turned away from the table.  Watching it again, I just realized that she turned to knock on the wooden hutch.  If you rewatch it, you can see her starting at me, possibly thinking "Knock?  I thought we were doing blocks.  But, ok, I'll knock . . ."  
She's such a clever little thing, I worry that others won't be able to see the wheels turning in her brain.  Then she goes rogue and tries to hurl all of the blocks on the floor behind the table.

She might not know shapes or colors, but she knows the important things, like farm animals:


And she loves books.  And cows.  And books that have cows in them.  And she does a big celebration when she finds the cow page in a book. (This video has a surprise ending).



Also, if you don't "like" us (that sounds weird) on Facebook, you might not be aware that "Amsterdam International" has now been shared by 493 people (or organizations) on Facebook.  If you have a FB page and you haven't shared the link yet, feel free :)

Talking and apples

Maya is trying to communicate more and more, sometimes with very frustrating results.  She is signing things that I don't understand, and does a lot of pointing (which I also sometimes don't understand).  She's developing a habit of grabbing my face and squeezing it (ouch) when she wants to tell me something.   I'm going to work today and tomorrow at trying to get picture magnets printed so that we can try using a picture system (when I printed them and laminated them, she just wanted to play with the little cards---hopefully magnets will work better.  Who knows.)

Anyway, yesterday I was feeding her a cereal bar and vacuuming.  She was on the floor, and I would give her a piece, vacuum for a minute, stop the vacuum, ask her if she wanted more, she would say "Mo, mo" and I would give her another piece.  I guess at one point I vacuumed for too long (and obviously I can't hear her little voice over the vacuum) because suddenly I felt something on my leg and when I looked down she was there.  She was holding her hands up to me and rapidly signing "More! More! More!"  She certainly knows what she wants :)  In she could talk I think she would have been saying "Hey!  Come on!  I'm starving here!"

Speaking of food, our apples are almost gone!  Most went to applesauce, a few went to apple bread. 

Here are the recipes (both of which were really easy):

Chunky Cinnamon Applesauce

Ingredients: Apples, cinnamon

Directions: Peel, core & roughly chop apples.  Put them in a crockpot with cinnamon.  Cook them until they're done enough for you.  (Low overnight or for most of a day, probably . . . high for 3-5 hours I think).  Ta-da!

Freezing: Since we all like the applesauce, I didn't freeze it in cubes (my usual MO for sauces/soups/liquidy things).  I just cooled it in the fridge, put it in a ziploc quart size freezer bag, and froze flat.


Apple Bread--makes 2 loaves!!!! (courtesy of my sister, with a little tweaking from me)

Ingredients:
1/2 cup applesauce
1/2 cup vegetable oil
3 eggs
2 cups sugar
1 tsp vanilla extract
3 cups diced apples (2-4 apples, depending on size)
3 cups flour (I used bread flour, it was the only thing I had on hand, and it worked fine)
1 tsp baking soda
1 tsp cinnamon
1 tsp salt

Directions: In one bowl, combine the first 6 ingredients (up to and including the apples).  In a second bowl, combine the last 4 ingredients.  Next, combine the two bowls together.  Grease two loaf pans well and bake a 300 for 90 mins. (Warning: The pans will only be half full or so when you fill them--don't worry, it will puff up)

This recipe is good, but it you want to make it fantastic, add a crumbly top (kind of like a coffee cake top):
Combine 1/4 cup brown sugar with 3 tbl flour, then use your fingers to mash in 2 tbl of butter until it forms coarse crumbs.  Sprinkle across the top of the loaf before baking----yum!!!  (I did this for each loaf and it was really good.) (Thanks, HCM, for the crumbly top help!)

Freezing: We ate one loaf and froze the other.  Cut it into slices, freeze flat, then put the slices in a gallon size ziploc freezer bag.

Why can't we just pick some apples like normal people?

Seriously.  We are not fruit hoarders . . . how did we end up with this many apples?

I'm going to plead ignorance.  I had no idea how many apples would fit into a bag.  Plus, last year we went to a different orchard---where you paid for a (much smaller) bag, and then got to fill it.  This place (Bishop's Orchards, which was great) weighed the bags, but we still overfilled them.  This is slightly over 2 bags of apples.  Very poor planning.   I'm hoping that applesauce freezes well, because Maya likes it.  Any other apple ideas?  Feel free to add them as a comment!

Anyway, we met my mom, sister, brother-in-law, nephew & niece at the orchard and had such a fun day!  Here are a few pictures:

                                          Emmie: Maya, I will set you free.

                                         Maya: You know how to work the straps?  I've been trying to figure it out
                                                    for months!

Cousin love (and tickles)

Complete pictures from the day are up on the blog's Facebook page (where photo memory is unlimited!).  Remember, you don't need to be a Facebook user to see our fanpage, it's public---just click on the picture at the top of this page, or google " 'Uncommon Sense Blog' Facebook".

Sudden Progress!

Right before we left my sister's house, Maya did 2 amazing things!  First, she signed "milk"---she's never done it before, and it's always amazing to see her sign something new.  I've been signing milk daily for months and months, and never even seen any indication that she cares when I sign it---then suddenly, boom!  She does it!

Annnddddd, then we decided to hand her her bottle (she gets one before naptime and one at bedtime) in the car to see if she could try to drink it on her own---and she did!  She needed a little help as the milk level dropped (we may need to switch back to smaller bottles that would be easier to tilt up), but she was able to hold her own bottle in the car.  I was a little bit giddy :)

Very slow progress:

On the opposite end of the progress spectrum, physical therapy type progress is slow going.  The great news is that Maya stands a lot more---she pulls up quickly and cruises well.  You guys get to see a lot of pictures where she looks like a stable, standing rockstar.  Like this:

However, in reality, she often looks like this:

(I like to think of this move as the "teapot" from the line "tip me over and pour me out" in the teapot song)

That's Miss Maya mid-fall, while cousin Collin thinks "What happened?  You were just standing so normally!".  She stands (and moves) with her knees locked---so the smallest wobble can send her tumbling.  She also tends to fall over when she gets excited (which is pretty darn cute, actually).  She'll be sitting on the floor and I'll say "Do you want to watch Signing Times?"---and she'll get all excited, start to laugh and wave her arms around, and topple right over :)     We're working on it. 

I'm trying to tell you something

It's fun to watch Maya try to communicate with us more and more, through signing, sounds, and temper tantrums.  Well, the last one isn't super fun.  

We're working on encouraging her to make sounds instead of only signing.  She's pretty consistently saying "Mmmm"  or "Ma" for "More" and making some open-mouthed sounds for "Open".  She loves saying open----open food, open doors, open bags of toys.  Good things happen when you open stuff.

Here she is, first signing for me to open, and then trying to talk---note the big rounded mouth trying to make an O, and the fact that she does more than one syllable :)   Progress!

Talking (well, kind of) & talking (well, kind of)

Two talking stories:

1.  The other night I went to check on Maya on my way to bed, and could quickly smell that she needed a diaper change.  Ugh.  I didn't want to wake her up, so I tried to carefully lift her, lay her on the changing pad, and change her.  I was gingerly moving her around and her eyes were closed, but she kept shaking her head from side to side.  Then I saw her hands moving, and when I looked to see what she was doing, she was signing "More, more, more!"   I could barely suppress my laughing as I went to tell Dave:  "She was just talking in her sleep!!!"  Priceless :)

2.  As far as actual babbling goes, if you ignore Maya long enough she may start talking.  I know that a lot of folks have never actually heard her, since she's kind of a quiet watcher around a lot of activity, so here's a video from dinner today: (By the way, no need to adjust your volume---it takes her a while to warm up, be patient.  And I have no idea what she was trying to tell me, but it may have been about the crumbs on her tray.)



Also, to prepare Maya's dinner I had to leave her unattended for about 2 minutes.  When I peeked into the living room this is what I saw:

(I can almost hear Parker thinking "Oh, she's coming!  You're going to be in troub-ble!")

(Dave pointed out that this whole episode is very "Calvin & Hobbes")

Two days in pictures, with no transitions between stories, and the worst and longest title ever

So, folks asked about the flier that I mentioned hanging around the neighborhood. I'd love to share it because I got so many responses! The title was "Young neighborhood mom seeks companionship" and no sooner did I hang it up than the emails started pouring in.

:)

Ok, for real, here it is (at Starbucks):

("Attention Parents of Kids with special needs" is the title)

Speaking of Starbucks, you may have noticed that you can see a giant Starbucks cup in almost all of my stroller pictures. That's a reusable iced coffee cup, and we make the coffee at home. I'm not buying coffee (and disposing of plastic cups) everyday. Here's Maya, and my cup, at the dog run:

Playing with the new camera has taught me about angles. Here she looks like she's at a park in the middle of a big city:

While here she could be swinging in a much smaller town

But really, there's just one big skinny building, and the shots were a few seconds apart.

Around 7:25 every night, we say "Maya, do you want to watch "Baby Signing Time?" And she does this:

Everyday I wear 3 rings. Last night I made pizza, and before I started kneading the dough I threw the rings in an empty baby food container. This morning when I went to put them on, I found a fourth. One of these things is not like the other . . . (Dave made it pre-work)

Maya tried to feed it a veggie stick.

We're working on veggie sticks in feeding therapy. She wants to do it all by herself (which has varying degrees of success).

While I made her breakfast, she went to work unfolding the laundry:

And she subtly tells me to put the camera away.

(An aside: A few posts back, I mentioned my "throw yourself into the universe" theory (henceforth TYITU), but I haven't had time to extrapolate at all. Way back when I wrote about the not knowing, a few interesting things happened. 1. I was forwarded an article from the Wall Street Journal about a family dealing with a lack of diagnosis for their son, and it brought to light how many people in the country struggle in that limbo situation. 2. In line with TYITU, I emailed the author of the article 3. She responded and pointed me towards an actual organization solely for families of kids who don't have diagnoses (SWAN . . . "syndromes without a name"). That's what the "swan" tag on some of my posts stands for.)

I need to take pictures of our Christmas decorations, this is the best time of year :)
For now:

Too cold to swing?! It's never too cold to swing!

She watches a Signing Time video (which is supposed to help teach/reinforce sign language) once a day. Yesterday her gate was open and I think she was worried that I would trap her if she wandered into the gated area. So she watched her video from wayyyy across the living room.



Maya loves her new chair, passed on from cousins Collin & Emerson. She climbs right up, but needs to practice getting down gracefully: