I'm the mom, but I'm not "just the mom"

This is an open response to the types of comments mentioned in the first paragraph.  If you're not involved in special needs care and therapies, these abbreviations might help you out:  AAC= Augmentative and Alternative Communication, SLP= Speech-Language Pathologist, AT= Assistive Technology, ATP= Assistive Technology Professional.



Over the past few weeks I’ve encountered an interesting divide/debate . . . an undercurrent in some comments made online by professionals (SLPs, AAC specialists or AT specialists) that either state or imply the following:  Parents should not be able to just choose iPad apps to use therapeutically or with regards to AAC (augmentative and alternative communication---using an app to communicate, the way that Maya does) without deferring to a professional. 

For obvious reasons, these comments make me bristle.  They imply (and sometimes state) that parents are naïve and uneducated about apps/devices and are just looking for a quick fix.  They also imply that parents are choosing to take matters into their own hands, rather than acknowledging the far more likely alternative: we would love--- LOVE--- an expert to arrive at our door, thoroughly assess our child, select the appropriate AAC device or app, design a plan to introduce that app, train us in how to implement it at home using best practices, and meet with us regularly to help the family progress in using the AAC.  

Please.  Send them our way.  Or tell us where to find them.

Because I looked.  And I searched.  And I wasn’t successful.*

I live in New York City, and while the city is short on therapists (like everywhere else) it generally has a solid amount of resources, if you’re willing to search for, fight for, and wait for them.  We have been fortunate enough to have extensive therapies for Maya from the time she was about 10 months old.  I’ve come to know a lot of therapists.  Maya attends an excellent preschool for children with special needs, staffed with extremely knowledgeable professionals. I am plugged into a network of special needs parents who know “all-of-the-best-xyzs” (doctors, therapists, homeopaths, etc).  I thought, surely, that when it was time for us to dive into AAC there would be a handful of “experts” at our disposal.

I was wrong.  Well, mostly.

Last fall, when I felt like it was time for Maya to move from her Word Book and commit to a legitimate, long-lasting, high tech AAC solution (as opposed to just the customization of Proloquo2Go that I had toyed with at home), I did what all parents do: I asked the professionals. Because that’s what we’re supposed to do—ask the people who work with our children for input and advice.  Certainly, they are more informed than I am about the available options in communication technology, right? 

As it turned out . . . not really.

And let me be very quick to say that this isn’t their fault.  Special educators specialize in meeting the diverse educational  needs of children with disabilities, but aren’t required to stay up to date on the changing field of assistive technology (which is a huge, rapidly shifting world, especially when iPad apps are considered).  Physical therapists and occupational therapists clearly weren’t the people to ask (except perhaps for physical access ideas).  And the SLPs?  I love our SLPs (all 3 of them).  The PROMPT therapist that we see focuses on oral motor stuff—she wasn’t going to guide our device selection.  Our home therapist loves and pushes Maya every week, and she knows a staggering amount about language development and eliciting sounds from my willful child . . . but AAC technology is not one of her areas of expertise.  Nor should it be, actually . . . or so says ASHA, the licensing body of all SLPs.

Per my friend the ATP: ASHA does not obligate SLPs to have expertise in AAC.  Most speech programs here in New York City offer future SLPs no more than one generalized class in AAC (and rarely have access to real devices or apps).  ASHA’s position is that the field of AAC is not owned by Speech, but rather based on experience:

"The SLP is expected to be able to recognize the limits of his/her expertise and issue referrals to appropriate colleagues as necessary."..."The SLP must acknowledge the need for expertise from other service providers who may include, but certainly not be limited to, physician, occupational therapist, physical therapist, vision specialist, rehabilitative engineer, teacher, psychologist, behavior consultant, and social worker. No less significant is input from parents, spouses, employers, and significant others.”**

Anyway, back to the SLPs:  The SLP at Maya’s preschool did exactly the right thing-she called in the assistive technology (AT) experts by writing a referral to get Maya an evaluation with the AT team that serves the NYC DOE.  At the time of the evaluation Maya had been working with the Word Book for 1-2 weeks and I could see how quickly she was soaking it up.  She had some experience navigating through screens on Proloquo2Go (an iPad app), although I was disenchanted with its organization.  I had already hosted representatives from Dynavox and Prentke Romich in my home, unbeknownst to the AT evaluation team, to evaluate their devices and determine whether one would fit Maya.  I eagerly waited to meet with the team, let Maya (then almost 3.5 yrs old) show off her emerging skills, and get matched with a dynamic device that would grow with her.

But they said she wasn’t ready. 

She was ready.

They said “We know, mom, that you want her to be ready, but a dynamic device would be too much for her right now.”

Even though she already had experience using a dynamic device. 

They said “Don’t worry, she can use this instead, and we’ll come back to reevaluate her in a year.”

Don’t worry, little girl, we will come back next year and maybe then we will grant you a device with more words.  Until then you can manage with 32 carefully chosen words at a time, we are sure.  You don’t need more words than that.  You may think that you do, but we know better.

I heard “Of course you think she could do more, because you’re the mom.  Trust us about this, though . . . we’re the experts.  We did, after all, spend 3 hours with her in this small, crowded office.  We know what she needs, and what she’s capable of, more than you do.   We are qualified to make this assessment.  You are not.”

And I hung my head and signed their papers, just to get any AT on her IEP, and when I left the building and lifted my head silent tears slid down my cheeks and I resolved, again, to figure this out on my own.  Because although I was “just the mom,” and while I wasn’t technically qualified to determine and implement AAC, I was clearly going to be the best shot that Maya had.

Again: I’m in a large city.  I’m an outspoken advocate.  My daughter is in an excellent special needs preschool.  I was willing to ask for help and consulted with a private ATP prior to the DOE AT evaluation.  And despite all of this, I still couldn’t locate an AAC specialist who would be able to match us with a product, design an implementation plan, and work with us.  Which makes me wonder how many people across the country (and worldwide, for that matter) have no choice but to try to go it alone . . . not because they feel like they are the best qualified person to make these AAC decisions, but because they’re the only candidate who’s shown up for the job.

And lest you think that I’m advocating for parents to write off professionals and just do it themselves----this is where I clearly state that I think that some parents go about do-it-yourself AAC (and do-it-yourself many other things, for that matter) the wrong way.  Picking a communication app because you saw it on 60 Minutes, or your neighbor’s friend’s kid used this app to communicate, or it-was-one-of-the-cheapest-ones-in-the-iTunes-store-so-why-not-just-try-it-out-because-we’ve-got-nothing-to-lose-anyway . . . these are the wrong ways.  You’re not trying out a new couch, you’re choosing an entire communication system that you hope your child will be interested in and become attached to.  And, if you’re looking for something long-term with growth potential, you’re not just picking a cheap app that will say a few words, you’re attempting to pick a system that has been developed by intelligent people who know about language, designed to make good linguistic sense.  I was all too aware that the device/app that I chose for Maya would affect the way that she learns to process language, the way that she begins to form phrases and sentences, the actual mapping of her brain.

It’s a lot of freaking pressure.

If you’re doing it right, you don’t just pop open the app store and download something.  Because even if you bought the best app around---here’s the key: the app doesn’t magically unlock language (not for most people, anyway).  Researching, buying, and downloading an app is the easy part (although it sure didn’t feel easy at the time).  Per my ATP friend, “Apps have very little to do with the effectiveness of AAC, it’s the configuration and implementation of the AAC approach that is far more important.  The app doesn’t elicit speech/communication from a person, the treatment approach does.” 

You need to not only research the devices or apps, but how to implement them. When the app is downloaded, and you sit down with your child and open it up . . . well, then what?  There’s a lot of homework to be done before sitting down at that table.

And so, I’ve done my homework (and continue to, daily).  I’ve read myself in circles-speech websites, scientific journal articles (with a highlighter, a notepad, and a window open on the computer in which I can google diagnoses, protocols, and best practice techniques to get a clearer understanding of the information in the paper that might initially go over my head). I read the LAMP manual, and a handful of speech, apraxia, and late-talker books. I follow speech and AAC people on Twitter, and I devour the links and information floating through their online communities.  I attend workshops: on apps for kids with special needs, on early literacy for children with special needs, on the Kaufman Protocol for children with apraxia, and I’m heading to the ISAAC conference in Pittsburgh this summer. 

I’m learning as much as I can, but it sometimes still feels like not enough.  Not when the reality of the situation is that the decisions that I make when I sit down with Maya and the talker are teaching her language.  I am showing her how to form sentences.  She uses the app at school, but most of the teaching is occurring at home with me.  The payoff is gigantic, but the pressure is great.  And I don’t want to mess it up.

I am not an expert.  Maya is the first preschooler that I’ve ever worked with, on AAC or otherwise (I used to teach middle school science, which, as I’m sure you can imagine, is very different than preschool linguistics).  I recognize my limitations as “just the mom” . . . and, rather than naively or ignorantly plowing ahead, assuming that I know best, I attempt to do what any intelligent person would do when they are unsure of how to best proceed.  I find someone who knows more than me, and I ask them.

To that end, I’m eternally grateful to the SLPs and ATPs that I’ve connected with online and off, who answer tweets and emails when I get stuck on how to move ahead following best practices, rather than just haphazardly.  A small group has been willing to reach out without judgment---without telling me that I “should really find a specialist to work with”, since I’m “just the mom” (because believe me, I’ve gotten responses along those lines, too).  And answering my questions is no small feat, since with every bit of progress that Maya makes I find myself facing another wait-how-can-I-do-this-best moment.  Here are some recent examples:  When using the device, should I model “I am hungry” or “I’m hungry”? What phrases should be considered as stand-alone buttons? Can you share some ideas for highlighting core vocabulary across many different settings? When do I start prompting her for more words, or building phrases like “I want milk” instead of just “milk”, and when do I back off, not wanting to frustrate her if she’s clearly telling me something with her one word choice?  What about the “I want” debate---I’ve heard some people speak out against the overuse of “I want”s, so when is it appropriate and when should they be avoided?

I know that I’m not an expert, and I make no claim to be one.  I also know that I’m the best option that Maya has right now, and that I will guide her towards more fluent communication with the best of my ability, consulting as many professionals as I can along the way.  And I will say, with certainty, that at this point I know a solid amount about apps, devices, and best practices in implementing AAC.  None of the therapists that we’ve worked with have ever expressed concern or displeasure that I am the leader of our push into AAC.  Even ASHA seems to support the I’m-driving-this-bus-myself position that I’ve found myself in, stating "It is strongly recommended that the AAC team be driven by the client and his/her family to the greatest extent possible. Part of the AAC program should be dedicated to finding and implementing ways in which the client can have maximal input regarding the disposition of the program."**

So, I may be the mom, but I am not “just the mom.”

I resent the assumption made by some professionals that parents who take matters into their own hands are taking the easy way out by just buying any app instead of working with a specialist.  My hand was forced.  This wasn’t my plan.  If there had been experts available I would have gladly passed this job to them, but there weren’t and so here we are.  I also resent the assumption made by some professionals that parents who take matters into their own hands are uninformed by default.  I’ve done everything- every thing- that I can think of to educate myself about AAC.  I looked before I leapt.  And while I can’t speak for them personally, I’m sure that there are many, many other parents who have done the same.

I hope that our story brings to light the personal aspect of what has happened when a family becomes the driving force behind the decision to implement AAC.  My goal here is to show that many, many parents feel obligated to push for AAC, whether they are trying to buy devices privately or to set up a plan with an iPad app, not because they feel like they know it all or they’re trying to take the easy way out . . . but because they have a child that they desperately want to give a voice to, and they don’t know who else to ask for help.  In addition, many of us are devoting huge amounts of time, energy, and money into educating ourselves (and, in turn, educating our family members, friends, and professionals who work with our children) about how to implement AAC and teach our children.  We are not naïve.  We are trying our best.

I’ve met parents who think they know everything (when they clearly don’t) and professionals who think that they know everything (when they clearly don’t).  I’ve also met individuals in each of those groups who are amazingly well versed and knowledgeable.  A little humility, combined with the fact that we’re all working towards the same goal, goes a long way in each direction.  Parents or professionals, we’re all just people who are sincerely doing the best that we can to help children find their voices. 

  

 

*I was able to find one extremely highly regarded AAC specialist in the city, but her waiting list for an evaluation was months long. I couldn’t make Maya wait months when I could see that she was ready.  She didn’t deserve that.  There must be others out there, but I couldn’t find them when I needed them.  I imagine many other parents, worldwide, face the same challenge.

**ASHA quotes come from this article: Roles and Responsibilities of Speech-Language Pathologists With Respect to Augmentative and Alternative Communication: Technical Report and can be found in the "Roles of the Speech-Language Pathologist" section

Notes from school, and video from the library

Today's blog update is brought to you not by me, but by Maya's preschool teacher (ok, I'll chime in, too, because I can't help myself).  These are notes from Maya's communication notebook (a book that travels to and from school and contains notes from me-to-the-teacher and vice versa.

From Tuesday:

"I think the app is great & she is doing well.  I def(initely) think you don't need to send in the book anymore.  She doesn't look for it really."

The app is great! She's doing well! I should stop sending the Word Book into school, and she's not looking for it anyway!  Woo hoo!  We had been wondering how to phase out the Word Book, since now that we've found Speak for Yourself (aka the perfect app) we want to focus on using solely that for communication.  As it turns out, Maya's not that attached to using the Word Book to communicate.  It's fantastic . . . and a little sad.  Our feeding therapist looked slightly horrified when I told her today, "Don't mention the w-o-r-d b-o-o-k, it's at home, we're phasing it out."  She was all, "Omg, you put so much work into that thing, and now it's done?!"  Well, yeah.  But we're moving on to something better. (And Maya still sleeps with the Word Book and will play with it at home, it's just becoming relegated to the status of security blanket, not communication tool.)

Today:

This one needs a little background. Maya's boyfriend just moved to the other side of the globe.
She had a major crush on a former classmate, and the feeling was mutual.  They gravitated towards each other, and it was seriously adorable.  Unfortunately, his family just moved clear across the planet . . . and we were all worried that she would take it hard.  She's been asking about him in the morning . . . I talk about who she'll see at school and she says, "Ah?  Ah!!!" (that's what she calls him).  She pulls his picture out of the Word Book.  It's a little sad. 

But then I got this note:

"Maya had a GREAT day.  Did such good listening & following directions.  Her & (blue tape blocks a boy's name) now hold hands while walking down (the hall)."

My girl apparently knows how to work a room.  Her former BFF has been gone for all of three days and she's already found a new partner in crime (well, for this week, at least).  I guess she'll never be lonely :)

And just for fun, here's a video from this afternoon.  After therapy we went to the library (a book of mine had come in).  It was a surprise---she didn't know we were going there.  And wow, was she excited:



You might remember that she's library-crazy, although we didn't know that until she got her hands on the Word Book and had words at her disposal for the first time (in the video at the bottom of this post, about 1 min in). All that she wanted to tell us was library-library-library.

 

Using the communication book to, you know, communicate

Thanksgiving break brought opportunities to see lots of people--my former (Dave's current) co-workers, my family, Dave's family, neighbors.  Each visit was different, but contained one similar exchange:  people are intrigued by Maya's Word Book.  They want to check it out.  Other kids love to pull the words and hear the velcro crinkle and crackle.  Adults want to know who made it, how we use it, what Maya does with it.  It's certainly a conversation piece.

However, seeing as many of these lovely people also read this blog (thanks, guys!) it also made me realize that I haven't really gotten around to explaining how Maya is currently using the Word Book.  This is probably because using the Woed Book, much like using any communication system, is a work in progress. It evolves, slowly but concretely, when I add new words or change the format.  But let me show-and-tell you what we've got going on right now.

In the beginning:  If you're new around here and thinking "Word Book? What's a Word Book?" go check this out: Introducing the Word Book.

Where we are now:
1.  Maya loves the book.  LOVES.  She wants it with her the moment she wakes up.  She won't go to sleep if it's not in the crib with her.  She holds it in the car, on the bus, etc.  (This means that the only way I can replace/add words is to steal it after she's fallen asleep and then replace it before I go to bed.  Kind of silly, but adorable.)

2.  She will tap out "I want"-"item"-"please" sentences.  (Although recently she's been getting confused and just tapping "I want"-"please" and then I have to say "You want what, Maya?" and she'll tap "alligator" or whatever and smile at me.  It's like her hands want to get through the sentence ASAP, and she's skipping the most important part.  We're working on it.)

This video shows a tired Maya, just home from school.  I know that she wants milk, but I'm trying to wait her out and make her ask for it . . . and then she does.  You can see how she "asks for" the book and then uses it to make a full sentence request.



3.  When we're going somewhere or doing an activity, I try to pull the words that we'll need and put them on the front of the binder.  (Ex--if we're going to play with play-doh I would put the colors on the front of the book)  By now, Maya knows where most of the words are in her book, and I can ask her to find them and put them on the cover herself.

This video shows her flip through the book to find "alligator", her favorite animal.  She then points to some animals to answer my questions.  Stay tuned to the end, when you see the type of ridiculous mistake that I make when I work on the book too late at night.



You might have also noticed that she put the leopard back in the appropriate spot---she's remembering more and more where the tiles are supposed to go.  This reinforces why it's beneficial to try to keep words in the same format (like a Prentke Romich device does, for example)---I'm not able to do that with the word book.  When we take words out, they just go anywhere on the cover (aside from the tiles along the side and the bottom that are stationary).

Regarding PECS
I sometimes call this a PECs book, because when I say "Word Book" no one knows what I mean, but if I say PECs book people can visualize what I'm talking about.  PECS stands for "Picture Exchange Communication System" and is a whole system (with 6 phases) of communication.  We started trying PECS with Maya about a year ago, and saw that it wasn't really a fit for us. For those familiar with PECS & curious why I'm not working the system, here's why:

• PECS fundamental idea is teaching kids to pick up a PEC (one of the picture tiles) and hand it over to a waiting person.  It's meant to teach kids to initiate communication.  Maya is constantly trying to initiate communication (she has high communicative intent), so I wasn't concerned about motivating her to want to engage with us.
• Having her pick up the PECs a year ago was a bad idea---once she had one in her hand, she was distracted by it and would play with it like a toy.  She also lacked the hand strength to easily pull them off the velcro strips.
• We're moving towards a touch screen.  This is a big one for me.  In this digital age of iPad screens and touch-screen communication devices, I want her to learn that she taps the tile, she gets auditory feedback (I say the word she taps) and that's that.  She's been exposed to this on the iPad already, and clearly understands the idea (as you saw in the first video).  I don't want to teach her to start giving me word tiles when she's already learned to tap out thoughts.

So that's that.  I'm not saying that PECS is a bad system, I just can't see a reason why I should try to use it.  It doesn't make good sense to me in our situation.  If you're interested in learning more about PECS and its phases, check out this link.

Where we're going:

I have no idea.

Just kidding.  Kind of.

Well, she's got the I want-item-please thing down. She answers questions.  I need more verbs, and other sentence builders.  You might be able to help me, actually!  If you are a speech person, or have an older child who uses a communication device, I've got some questions:

-What comes next?  What's the clear next step after "I want" sentences?
-What are the most powerful sight words (2-3) that I could add to the book to facilitate longer sentences?  (And? To? Something else?)

As always, I'll take any advice you've got (and I'll share the good stuff, too)

I'm exhausted, the universe is out to get me, and it may all be worth it, anyway

This week is just a little crazy. 

• Mon: I had a job interview
• Tues-Maya had a doctor's appointment in the morning. I had a support group meeting in the evening. 
• Weds--I met at school with Maya's teacher, then took her to feeding therapy. 
• Today-I worked at a consulting gig. 
• Tomorrow-Maya has an assistive technology evaluation at school (I'll be going, too) -This happened much faster than expected, and I had an emergency phone consultation with an awesome AT guy last night to help me prep for the meeting. 
• Saturday-I'm working at a different job
• Sunday-Frantically clean up the house before Monday
• Monday-A reporter (&camera man-shudder) are coming to meet with us about a possible story

Each of the 2 jobs required prep work and the trading of dozens of emails, as did the AT evaluation tomorrow.  Add to this the continued communication book making, iPad screen developing, writing, and general life responsibilities, and I am frazzled.  Maybe beyond frazzled, actually.  I'm kind of catatonic.  In the mornings, I am focused and multitasking.  When Maya comes home, I am animated and doting.  Once she's in bed, my eyes glaze over as I work on the computer, answer emails, etc.  I'm staying up too late, I'm getting up too early, and I'm willing myself to just make it through to next Tuesday. 

As is typically the case when too much is on my plate, I'm rushing and cutting corners, which inevitably makes more work for myself.  I entered my online banking code incorrectly 3 times today, got locked out of the account, and had to spend 20 minutes on the phone convincing them that I really am myself.  I'm wiped out.

Now that you understand my mental state, you'll see the humor in this story.

The job that I helped with today was grading standardized-style tests.  Last week I did some work from home to help develop rubrics for part of the test, and it was really enjoyable to work on something that was not special-needs related.  Suddenly I remembered that I used to have a career in academics, and I used to enjoy it.  I was really looking forward to sitting in a room full of adults today, coffee cup on my desk, #2 pencil in hand, and grading whatever chunk of the test I was assigned.

I opened the book to my section of the test and started grading my 3 short answer questions.  My brow furrowed as I skimmed the first answer, and I flipped back to take a look at the passage . . .

 . . . which was all about a boy who wished he could play in the NBA, but he couldn't, because he was in a wheelchair.

Seriously?

Seriously.

Screw you, universe.  All I wanted was a few hours off.  Just a little mental break. 

The last question asked "Why was Justin sad when he went to the NBA game?" and I had to read over 300 answers of "He knew he could never fulfill his dream of playing in the NBA because of his disability."

(sigh)

On a happier note, Maya went on her first class trip today!  Her class went to the zoo (which she loves).  Last night I made her a zoo communication board that she could bring with her today (just one laminated sheet because I knew the book would be too heavy to bring).  Her (fabulous) teacher emailed the parents some pictures, and my eyes teared up when I saw this one:

She used the board, and the teacher said she loved it.  She got to talk at the zoo.  And after she came home, she kept telling us "zoo! zoo!" (by pointing) and showing us all of the animals that she saw.  (If you ask her if she saw the penguins, she smiles and holds her nose---that penguin house is so stinky!)

 it's blurry because it's heavily cropped

This was cropped out of the group photo of all of the kids + all of their partners for the day.  Look at her clutching her words.  She's really getting attached to the word book, she knows it's how she can make herself heard.

Totally makes the late nights working on that stuff worth it, I think.

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.

Introducing the Word Book! (Or, how to make your own communication book)

Recently, I've had communication on the brain.    The time has come to implement a system of communication that will let Maya "speak" more easily to those around her.  We've tried picture cards, picture boards, and the iPad, but nothing has really stuck.  All of the systems become cumbersome, or are used inconsistently.  Finally, it seems like we're making solid progress . . . Maya has been a virtual chatterbox this weekend, thanks to a communcation book that anyone make at home, with minimal supplies.

Last week I visited Maya's school twice.  Both times, I was focused on communication (and I also got to spy on a PT session, which was fun).  On Wednesday, I visited her teacher and speech therapist, taking photos of the communication boards that they have been using with her at school.  Here's a picture of a board that she uses while playing with dolls at school:

Pretty basic.  She points to things, the teacher will say them and encourage her to make the starting sounds of the words.

The problem that I had been having at home with the boards is that it's really hard to get the right words on the board.  The pressure of selecting the words was enough to make me come undone.  I mean, when I make a board I'm literally chosing every single thing that she can say.  Imagine if you sat down to play a game and were only allowed to use 20 words, which had all been predetermined by someone else.  I hated that my word choices would limit her.  But that changed on Thursday.

Thursday I returned to the school to attend a workshop on increasing communication at home.  The workshop was mostly useless, except for 1 key point.  Velcro.  At one point the presenter held up a little communication board that had velcro squares on it---and I had a memory flashback to seeing a communication book lined with velcro months ago, so that the board itself is dynamic.  This was what I needed---a board that could easily shift and move, with many words at her fingertips.  So I got to work. 

Note: I'm not inventing the idea of velcro and communication books---many commercial ones exist.  But you can make this at home, and it will be cheap and easy. When I googled how to make your own communication book I found nothing useful.  So this is what I did:

Step 1: Start with the basics.  I made my picture cards in BoardMaker (which makes life easier---but you don't need it.  You can do this with photographs or clipart, too) and put velcro on the back of the squares.  For the book, I'm using a 1" binder with velcro strips.  I figured that there are certain basic words that she would almost always need, so those remain on the cover of the binder:

Step 2: Make the word tiles and put them in the binder.  I'm not going to lie, making the tiles is a bit labor intensive, but it's the type of mindless work you can do while you watch TV.  The tiles are stored inside the binder on old pages from a photo album (they are more sturdy than sheets of paper).  They have velcro running across the page, like the cover. 

 We went to a hay ride/pumpkin patch on Sunday, which explains why we're talking about skeletons.

Step 3: Organize.  Clearly, the words above aren't organized.  I'm working on that now (or will be working on it after I finish this blog post).  I'm going to make pages for "art", "people", "food & drinks", etc.

I've also learned (in the past 3 days) that these littles tiles will get lost--everywhere.  Initially this wasn't a problem, but as the number of tiles increases I won't be able to figure out what words she's lost.  And losing a tile renders her incapable of saying that word.  So it's a big deal. 

To that end, I'm going to use a permanent marker to label the place under the tile, so that when the book comes home from school all jumbled up I can reorganize and see if any words need to be reprinted.

The space under the "Maya" tile is labeled.

Step 4: Using it.  Maya caught on right away, and seemed to grasp the magnitude of the system---I have words!  She had a massive breakdown when I had to take the binder to buckle her into the stroller, and loves to pick up the words and show them to me.  She quickly started pointing to 2-tile "sentences", which was great to see. 

Notes:
-Maya learns the cartoon pictures pretty easily.  If your child is a more concrete thinker, photo tiles might be better.
-I like this because she has all of the words!  She flipped through the pages today several times, to remind me that she went on a "pony ride" and tell me "Grandpa".  I don't know why she was thinking about Grandpa, but if she only had a "playground" board in front of her at that moment, she wouldn't have been able to share that thought with me at all.
-We're working towards the higher tech versions of this---the iPad and AAC devices.  But this is a solid start, for now.

Enough of my talking . . . let Maya show you how it's been working for us:



*I would greatly appreciate any and all tips, tricks, feedback, etc.  If you have ideas on how to use/improve the Word Book, please share them!