Sunday, August 6, 2017

Pool Noodle Art Robot (and free printable book)

Quick post!

In my sessions tomorrow we will be building an art robot. A few years ago, while at AAC camp, we built a similar robot using a cup---but I just couldn't get it to work at home. A quick google turned up a similar art robot with a pool noodle body, and it works perfectly. Here's what you need:

Must-have items:
-pool noodle (just slice off a chunk a few inches long)
-3 markers (those are the legs)
-vibrating toothbrush (You can find these at the drugstore. I got a 2-pack at CVS for around $9.)
-paper (for the robot to draw on)

Too add extra fun and language opportunities:
-pipe cleaners (arms)
-construction paper and/or googly eyes (eyes, nose mouth----we'll use construction paper to add in extra language choices about which color to use, whether we want big or small eyes, etc)

Assembly is easy! Put face pieces onto the pool noodle. Stick pipe cleaner arms in (we didn't even need to pre-make holes for these, they slid right in). Turn upside down and tape on markers (they should be more or less evenly spaced, and sticking out about the same length, or your robot will tip). Then stick the toothbrush into the center of the pool noodle, turn on, and watch it go!  (I removed the toothbrush head from my toothbrush---it popped off when I tugged/twisted with pliers.) We also had to add a bit of tape around the body of the toothbrush to ensure a snug fit in the noodle.

I made a book to go with this activity. It's very simple and filled with opportunities to model core words for beginning AAC users (need, make, put, on, which, look, take, off, in, turn, it, go, stop, finished). I also plan on turning the robot on/off and modeling: my turn, your turn, on, off, go, stop, more, finished. Body parts (eyes/nose/mouth/arms/legs/body), colors (of markers and construction paper), and size descriptors (big/small) will also be used when we are making choices and assembling.

Here are the screenshots from "Building A Robot":

The book is available for (free) download. It's a powerpoint file and can easily be modified to fit your kids/clients/students! Here is the link to view/download "Building a Robot"


Tuesday, June 13, 2017

AAC after school: Most success, success, least success

It's been hot in NYC for the past few days, and heat takes a real toll on Maya. After school yesterday she seemed content, but exhausted . . . and (interestingly?) her verbal speech basically evaporates when she is tired. (Evidence of the need to advocate for AAC for children who are sometimes capable of verbal speech . . . but I digress.)

She told me "No snack today" and I asked "Why didn't you eat your snack?" and she yelled "No!" and wouldn't/couldn't tell me more. So I gave her a snack, set her up with homework, and tried to ask a little bit about her day . . . but I got nothing in response. At all.

So I pulled out Mini, and sat at the table next to her. Without saying anything, I started to tap out the beginning of a sentence (in whisper mode so she couldn't hear what I was saying, because secrets are her kryptonite). And when I finished tapping out "I didn't have snack today because" I slid it over to her and she filled in the rest:

(image is a photo of Mini's screen, which reads "i didn't have snack today because I not open it mon". Maya calls me Mon instead of "mom.")

Victory! I got the information that I wanted (she's been having a bit of a snack stand-off for the past few days, so this answer makes sense to me). I decided to continue the game---I would write a sentence starter and then pass Mini over, and Maya could complete the sentence. It seemed win-win-win: good modeling, good home-use-of-AAC, and a good way to sway Maya into talking about her day.

I grabbed my phone to take a quick video clip, with the thought of sharing this story here. And I got a good one! 

And a mediocre one! 

And a lousy one! 

And while it's kind of the norm to share highlights online, I thought I should just share all three . . . because real-life-AAC-family. In the first part, the strategy works. In the second, you'll hear a distracting little brother, bathroom talk, a mom-who's-trying-to-keep-everyone-focused-and-failing. You'll see Maya get tired, get distracted, and lose interest at different parts. And in the third section, it's just not happening. (Although I should note that AAC use by me, even when rejected by Maya, is still validating AAC as communication that I enjoy and am happy to use---so it's not a failure! It's just the least successful example here.)

Real life, folks. 

Monday, June 5, 2017


She talks so much now.

It takes me by surprise, frequently.

Sometimes she speaks to acquaintances (neighbors, local friends) and I open my mouth to translate exactly as they open their mouth to respond to her, not needing my translation because they understood her just fine.

Other times (like in the video below) people (including me) think they understand, and respond as if they understand, and the conversation turns away from her message, and she often doesn't fight back to correct it. 

Sometimes she is so tired in the afternoon, or when she isn't feeling well, or when she gets too hot or too cold or is somehow off-kilter, and she is silent again. She'll use Mini then, if I bring it to her and sit quietly with her and we take turns tapping things . . . but the quiet, the almost total lack of speech . . . it surprises me, too. Just as much as the talkative times do.

Once upon a time, we fit so clearly into the second A of AAC (augmentative and alternative communication)---her talker was an alternative form of communication, since speech wasn't accessible. Now we straddle the augmentative and alternative worlds---sometimes our device augments speech, sometimes it's an alternate method of communication, and sometimes we have to go and search for it because we haven't used it in hours (whoops).

The video below, in which Maya describes some drama from her bus ride home, is a snapshot of Maya's speech right now. The fact that it includes me responding incorrectly to something she says also shows how important AAC is for people who don't have reliably intelligible speech---she needs a way of clarifying what she says and she also needs a reliable communication method to use with people who won't understand her speech (or when her speech is difficult to access, like when she's tired). Because of this need for AAC, it's important that we keep modeling, so that she keeps her skills up to par, learns where new words are, doesn't forget the locations of other words, etc. It's much easier to drop the modeling ball when Maya herself is favoring speech---but we can't let ourselves off the hook, not if we want her AAC vocabulary to stay solid (and expand!). 

Thursday, June 1, 2017


So, here it is. The update 8.5 years in the making. 

Back in December, I received a message from a blog reader inquiring about a particular syndrome, and whether Maya might have it (this happens from time to time). She was very nice and explained that Maya looks a lot like a relative of hers, who was recently diagnosed with a rare syndrome. (You may remember that our first exome sequencing was conducted in 2012 as part of a research project. At that time they identified a gene mutation as a possible causative issue for Maya, but we just filed that information away since there was no associated syndrome----yet. And then I intentionally pushed it to the way back of my mind and grew to mostly really enjoy being undiagnosed-ish.) After receiving this email, I dug back in my paperwork from our exome sequencing and found that this reader was naming the same gene that our research team had highlighted as probably-noteworthy-but-too-new-to-really-know (MED13L). 

Fast forward to March, when we met with a new geneticist who happens to be connected to a group conducting research on this gene (actually on a whole group of genes, including this one). She re-ran our genetic sequencing (since the first sequence was done as part of research it wasn't in Maya's clinical file) and last week we found out that this round of testing confirmed the earlier result. Maya has a genetic mutation on the MED13L gene. The test also confirmed that this mutation (one little t nucleotide that should have been a c) was de novo, meaning that it was a chance occurrence (Dave and I were also tested and neither of us carries that mutation).

And so, Maya now has an official medical diagnosis. She has a rare genetic syndrome called MED13L syndrome. The information about this syndrome is pretty limited. There seem to be around 100 people (maybe? maybe less?) worldwide that currently carry this diagnosis, and it's rare enough that it's not even included yet on this list of rare diseases (interestingly, the criteria here for "rare" is 200,000 diagnoses or less, so 100 people is like . . . wow). As whole exome sequencing becomes a more common practice for children with unknown genetic conditions, we expect that the number of people diagnosed with MED13L syndrome will increase. 

Right now, the disorder is only characterized by people who have been identified with the condition. While some of the characteristics that currently define the disorder are a match for Maya (for example, speech problems and ataxia--lack of balance) others are clearly not (for example, she does not exhibit short stature or have a cleft palate, and she has recently revisited a cardiologist and had bloodwork done to confirm that we have no concerns regarding cardiac malformations or leukemia). 

If you think about the people most likely to pursue non-routine comprehensive genetic testing, many of them fall into a few categories: a) those with younger undiagnosed children, who may have access to this newer testing in a more routine manner (when Maya was tested, microarrays were a common last genetic step---now, it seems that exome sequencing is routinely offered to some), b) those who have older children who have continued to pursue non-routine genetic testing or follow up regularly with genetics, and c) those who get an email from a blog reader suggesting it. (I think that third category is pretty small). To that end, we don't expect to gain a lot of information about prognosis----because many of the children are young, and the older diagnosed individuals could disproportionately represent the characteristics of the condition. Basically, the data set is small, and small data sets are shaky.  

Also, we don't know if any of these individuals have had access to the communication and writing technology that Maya has been immersed in from toddler-hood (clearly, we would never have known how clever she is without her ability to write and talk with her device . . . and that lack of knowledge would have impacted her educational opportunities and general life path). What we do hope to find out from other families is possible medical information---what medications work well in our children, which don't, whether there are any complications to look out for, etc. And maybe to makes connections with a new community, too. 

It's interesting to have a diagnosis after almost 9 years of not having one. In the beginning the diagnosis seemed desperately important, but at some point I really grew into being "undiagnosed"---I liked the absence of labels, the fact that no one could google a disorder and somehow think that they knew Maya, or what she might be capable of, based on an online blurb. I'm truly grateful for those undiagnosed years. So . . . bittersweet, I think. Or maybe not even all that meaningful. I'm not sure yet. I've got a lot to learn about, and a lot to process---and I'm sure that I'll share more about all of it as it unfolds, in time. But for right now this transition---this end-of-the-undiagnosed-ness--- it feels like the end of a chapter, and there's something to be said for finishing a chapter and turning the page to start the next one.

(Image is a montage of photos from Tuesday, Maya's 9th birthday, including: Maya and Will blowing out the candles on her cake, Maya and Will in her classroom for a special lunch party, Maya and Will sharing a hug, Maya smiling at a present, and Maya gazing happily at her new nutcracker)

(Image is the typed word "Undiagnosed", a blue marker has crossed out the "Un" and added a the date of our official diagnosis underneath, 5/25/17.)

Sunday, May 28, 2017

Barnes & Noble Summer Reading Program (FREE book for kids!) (visual menu)

I recently found out that Barnes & Noble has a summer reading program for kids (grades 1-6), through which each child can earn 1 free book! 

(image is logo on the front of the B&N Summer Reading journal)

Here's how it works:
1. Read 8 books.
2. Fill out reading journal for these books (title, author, favorite part).
3. Bring completed reading journal to participating B&N store and claim your free book!

(image is the back page of the B&N Summer Reading Journal, listing the free book choices)

There are 24 books to choose from when selecting a free book: eight for grades 1-2, eight for grades 3-4, and eight for grades 5-6. These books are listed (title/author) in the back of the reading journal, but I wasn't able to find a visual menu anywhere online, so I made one. A visual menu of books increases accessibility for those who can't independently read/remember the titles and provides an easier means of selection for those who can demonstrate choice more easily by pointing to an image----and also, who doesn't appreciate seeing the cover when you're choosing a book?  If your child would benefit from a visual menu of the books, this menu can be downloaded (for free) here. 

(Image is the visual book menu. It contains pictures of the 24 available book covers, broken into the 3 grade level categories)

Here's the link to more information about the Barnes & Noble Summer Reading Program (kind of tricky, scroll about halfway down the page to see the information, including the journal download):

Happy reading!

Thursday, February 23, 2017

The Leap: AAC by 18 months, 3 years later

This post is a 3-years-later follow up to my blog post AAC by 18 Months.

Yesterday morning I received a message reminding me that (exactly) three years ago, I shared this status on Facebook. 

Three years ago yesterday was when I decided to lock our modeling/play iPad into guided access and give it to Will, so that he could have his own talker.

He was 17 months old. His speech at the time was on track as a 17 month old---he had a bunch of word approximations (I have them written down somewhere), he would label and request objects, and he wasn’t combining words yet (again, typical for 17 months).

On 2/22/2014 I gave him a talker because he really wanted one. Because it was hard to keep him away from Maya’s talker, and because I thought that introducing him to AAC would deepen their relationship and communication . . . and because AAC is an important part of our family culture.

I also gave it to him because, at that point, I had been running my big mouth online for a few years. I had been shouting into the void that people needed to “provide robust AAC early!” I had argued with parents and professionals in online groups, and confidently declared that “AAC will NOT impede speech development!” and that “When speech becomes easier to access, it will be used!”

And now I had Will, 17 months old, in the adorable early stages of developing his speech, and I was about to put a screen in front of him (a screen! the horror!) and let him use that to communicate.

Guys . . . I was really scared. Like, pit-of-my-stomach, what-if-I’m-about-to-really-mess-up-as-a-mom, it’s-all-well-and-good-to-insist-this-won’t-cause-problems-but-this-is-my-kid’s-future-speech-we’re-talking-about scared. I-can-already-hear-friends-and-family-judging-me-for-giving-my-toddler-a-talking-device scared.

I wish that all professionals could try on this type of fear. With Maya, who had no speech, I ran into the world of AAC with open arms, thirsty to learn and buy and implement and immerse.  Deciding to give AAC to Will, and struggling with the emotions that were a part of that decision, allowed me to understand what the process is like for parents of children who have some speech and are being told that they should add AAC into the communication mix. The fear of losing speech, or slowing speech development, is huge. Parents agonize over all sorts of parenting decisions (If I hide vegetables in brownies will my kids ever learn to eat non-hidden vegetables? Will TV time stifle creativity? Will tricking my children into thinking it’s bedtime 30 minutes earlier tonight lead to trust issues?) . . . and those ones don’t carry potential consequences that feel so big.

I am an AAC parent-advocate. I have read a ton of AAC research. I’m heavily involved in AAC networks.

I struggled.

But I gave it to him.

And 3 years later, I can tell you what has happened as a result of that decision.
  • We were able to avoid many toddler tantrums related to not understanding our child’s early speech, because he could use AAC as a back-up, or as a way to give clues as to what he was thinking.
  • Will’s speech milestones (2 word combinations, sentences, questions, etc.) all occurred either on time or early.
  • He began speaking new word approximations after using those words on a talker (e.g., he may have found “blueberries” on the talker and used that button a lot for a few days, and then I’d hear him verbally producing a form of “blueberries”).
  • Will and Maya connected in new, deep, amazing ways. For her, Will reinforced that using a talker is just something that people do. For himself, he got to be like his big sister, whom he adores. They giggled together. She taught him how to find new things. He showed her things he wanted to talk about. They still, to this day, make up games about finding words or saying silly sentences.
  • As Will spoke more and words became more clear, he used those words on the talker less . . . just as I had said online (when speech is more easily accessible, it will be used).
  • Will became an expert in communication repair. He is the most multi-modal 4 year old communicator I’ve ever seen. If he’s saying a word unclearly or can’t remember a word, he will act it out, give amazing clues, tell us words that it sounds like, etc. When he was 2-3 (and so much speech is somewhat unintelligible) he used the talker for communication repair in clever, fantastic ways.
  • Will began reading at an age earlier than expected, which I believe is partially due to text exposure and keyboard use.
  • He uses the talker now the way that a child might use a dictionary for spelling---he’ll ask me how to spell a word to write down, but if I’m not quick he’ll grab a talker. Or he’ll start typing in the search feature and then check out spellings of multiple words.
  • His receptive and expressive language and vocabulary are very high (above 90th percentile at last measurement).

It is unlikely, therefore, that early introduction of AAC had any negative impact on his speech or language development.

It’s been good. Enlightening. Endearing and surprising. Stunning, sometimes. Silly and fun and inspiring, in ways. Amazing.

But that leap . . . it’s tough.

Parents, if you are considering AAC for a nonverbal or minimally verbal little one, but holding back because you’re scared, take the leap. Your child deserves the words, in whatever way they can access them right now. The research says that AAC will not impede speech or language development---it will actually support speech and language development as it provides your child with a voice.

Professionals, the fear is real. Parents may not be holding back because AAC is tough to learn, or difficult to logistically manage, or cumbersome, or unfamiliar. They might be really scared of making the “wrong” choice for their child---they might worry that providing AAC to a little one may seem like an easier way to access words right now, at the cost of risking long term speech development. It’s your job to create a supportive, open environment in which these discussions can be had, to acknowledge these (very real) fears, to provide information and support, and to help these families connect with other AAC families (online or in person).

The struggle is real.
The risk feels real.
The leap is big.
The rewards are kind of limitless.


Thursday, February 16, 2017

Why We Didn't Use AAC At All Yesterday

(a (hypothetical) letter from a parent to a therapist)*

Dear SLP,

We didn't use the talker at all yesterday. Not one little bit. I had plans to use it---no really, I did! I had a whole activity in mind! What happened, you ask? Life, homework, and life again.

To start with, things are busy here. I was only home with Maya for 90 minutes, and you might as well call that 45, once you subtract the home-from-school 20 mins (that's for putting coats and shoes away, reviewing items in backpack, fixing a snack, etc.) and the Mom's-about-to-leave 25 mins (that's for making and serving dinner, packing my bags for school, finding the papers that I've misplaced since the morning, etc). So 45 mins. During that time, today, we had to make Maya's "100 Days" poster for school.

Maya had already said she wanted to show 100 cotton balls, and I had cut out "jars" for the cotton balls. I thought about all of the ways that we could use the talker for that project. We could talk about how the glue feels, or counting. Grouping cotton balls, putting them in jars, moving them around, a top row of jars and a bottom row. We could talk about how the cotton balls feel, where cotton comes from, what things in our home are made of cotton. We could make piles of extra cotton balls, or little snowmen, or pretend that they are marshmallows that we could gobble up.

I was ready. I was invested. I was energized!

But Maya was tired. Turns out the Valentine's Day dance had wiped her out. There was much staring into space, and much resting her head on the table. Every group of ten that we counted took several re-starts, since she was kind of just moving her hands without looking and staring into the distance (and I wasn't going to do it for her, so we kept starting over). Modeling + helping to stay focused on counting cotton balls = challenging (maybe pointless?). And the counting was more important than the modeling.

And the glue. My word, the glue. Do you know what happens if you get a little glue on your fingers and then try to count cotton balls? They all stick to you. And to each other. And it's really hard to peel them off, because now they have glue on them and they just stick to your non-glued fingers (by the way, now your non-glued fingers have become glued fingers). There's no way to use a talker with gluey, cotton-ball covered fingers.

The poster was made. The talker wasn't used. But I sure invested a lot of thought ahead of time into all of the great stuff I would model while making the poster. Maybe next time.

An AAC mom who's doing her best

*this is a true story, but not a true letter, because we don't have an SLP who assigns AAC homework or checks up on our home use (kind of wish we did!). It's provided to serve a little window into how sometimes a family "who didn't even use the talker at all after school yesterday" may have really tried their best, despite having nothing to show for it in the data log. AAC professionals, the best way for you to foster AAC carryover at home is to create an open dialogue in which families feel comfortable (and not judged) sharing their barriers to home use. Then you can help supply short, simple-to-implement ideas to help increase AAC use at home!

(image is Maya and Will sitting together before Maya's bus came this morning. She is holding her completed 100 days poster. Will is making a silly face because he was saying "look at this poster!"---but he liked this picture and told me to use this one)

Wednesday, February 8, 2017


As NYC looks ahead to a likely storm tonight (woohoo! snow!) I'm thinking about driving on ice. I didn't know the fun of driving on ice until college, when a friend had me drive to a (large, totally empty) parking lot and purposefully induce a slide. It was fun, and freeing, and there wasn't really anything for the driver (me) to do. We just slid.

In my AAC family, we've just been sliding.

Not doing anything.

Don't get me wrong, the talkers are here. We use them for writing, or for homework. We always bring at least one with us when we go out. When Maya tells me that we need to add a word, we add the word. And . . . that's about it.



But sliding forever . . . it won't really get you where you're trying to go. It's fun. And maybe when it's snowing and icy you just need to take a break and let the slide take over for a bit. Eventually, though, if you don't lean forward and start driving again, you'll never get out of the parking lot.

And while I won't continue the analogy through the specifics of wheel turning and brake usage, I will offer this: to get out of a slide, you really need one thing: traction.

To get out of a metaphorical slide you need traction, too.

And so yesterday afternoon, in the space between getting the kids home from school and leaving for my night class, I made the first move toward gaining traction. I decided that I was going to model (which Maya has been somewhat resistant to) and that I needed a motivating, simple activity---one quick enough that I would still have time to make dinner and pack for school, yet motivating enough that the kids would have to attend to the talker, because how-could-they-not. Something that would give me the feeling that I had been successful---actively modeled, engaged the kids---while still being totally manageable (because there's only so much time between getting Maya off the bus and running out the door for my class). Just one activity. And a few purposeful minutes of modeling. A little traction.

Solution = secrets and cookies.

First, I told them verbally that I had a secret. (That's all it takes to get their rapt attention.)

Then, I got a talker. And I stopped speaking and started exclusively using a talker for communication. I said things like this:
  • I got you something.
  • It's hiding.
  • You can't find it.
  • I thought that maybe we could . . . (then I paused for dramatic effect, as they hopped and wiggled and said "what?! what?!")
  • Go to sleep. Repeat whole sentence: I thought that maybe we could go to sleep. (giggles, shouts of "no!")
  • I thought that maybe we could slice and bake. (long pause, they started to ask for more info)
  • What could we slice and bake? (they are unsure)
  • Could we bake a shoe? (No!)
  • Could we bake a banana? (No!)
  • What could we bake? (Maya said "cake")
  • What else? ("Cookies")
  • Yes!
  • Maybe we could bake cookies (And there was much rejoicing)
(for the record: between each of my utterances I sat back away from the talker, so that if a child wanted to jump in and say something they could. No one did.)

And then, the talker was ignored as we washed hands, grabbed a bar of refrigerated cookie dough and child knives, and got to slicing.

Traction. Just a little bit.

Enough to start the pull out of the slide.

And cookies.

(image is a photo of the talker's screen, taken yesterday afternoon. The screen reads: Maybe we could bake cookies)

Sunday, September 11, 2016

I may not live to see our (AAC) glory, but I will gladly join the fight.

(Originally posted on our Facebook page on 6/9/16. That post, and comments, can be seen here.)

The AAC times, they are a-changing.

I believe this.

I believe that one day SLP students will sit in (a mandatory) AAC class and learn about the history of AAC.

They will learn about prerequisite skills for AAC . . .cognition that is not too low, being attentive and 'motivated to communicate', ability to match symbols to words, solid fine motor skills, minimal to no 'negative behaviors', not too young and not too old.

They will be appropriately shocked by the notion that there were once considered to be prerequisite skills for use of a robust AAC system.

They will learn about the AAC hierarchy . . . first a child must recognize and match photos with labels, then more abstract pictures. First a child must select from a field of 2, then 4, then 6, and so on up the even-numbered-marching ladder. First a child must be able to understand categories and which items belong in each category, because how else will they find breakfast foods? First a child must successfully use no tech, then low tech, then, if mastery is demonstrated, high tech.

They will be appropriately horrified.

They will wring their hands over the children who were victims of this outdated, dangerous approach to AAC. They will somberly reflect upon the children who lived and died and understood and sat in basement classrooms with no way to say anything meaningful, the way that we currently somberly reflect upon the children with disabilities who used to be placed in institutions at birth.

They will have trouble understanding.

They will say "But we know that typical kids learn to speak by saying words and having people respond---of course nonspeakers would learn AAC the same way."

They will say "We immerse typically developing babies in speech, because they can access and produce speech . . . of course we should immerse children with language difficulties in robust AAC, because they can access and produce that type of 'speech.'"

They will be grateful for the tools at their disposal, many of which I probably can't imagine.

They will introduce and implement AAC early and often as part of a first-level treatment approach for nonspeakers. And those nonspeakers will have more rapid increases in their development of communicative intent, their ability to share their thoughts, and their rate of speech development.

I believe this.

I believe that the voices we lend to this fight accelerate the process. I believe that every time we speak publicly about presuming competence, giving all the words, using robust systems early and often, and throwing away the ridiculous hierarchy, we reach new people. And while some of these new people will brush us off as idealistic, some will join the movement. Others will think twice the next time they sit down and pull out a small set of picture cards.

There's a line in the musical Hamilton that says, "I may not live to see our glory, but I will gladly join the fight." I believe that this lines directly up with our place in AAC history.

Presuming competence.

No effing prerequisite skills for robust AAC.

AAC immersion that isn't contingent upon rapid successful participation from the potential AAC user.

I may not live to see our glory, but I will gladly join the fight.

Fight with us.