She wants to name names

This isn't actually a blog post (she said at the start of what is clearly, literally, a blog post) it's a request for help. SLPs/AAC people/AAC parents/Special ed folks/Smart creative people, I need input.

Maya has become very fixated on characters. Any characters. All characters. Any cartoon character that she sees, she immediately asks what it's name is, and demands that we add a button to mini (the talker) with that character's image and name. This is tricky, for a few reasons. On one hand, if she wants a button that says "Mario" (from Super Mario Brothers, which she saw in a birthday party catalog),  then she should get one and be able to say it. (This is the generally right answer, and what I feel like is correct when I think about AAC use and AAC users---if they're asking for a way to say something, they should get it.) On the flip side, what we are seeing (after weeks of this behavior, and the addition of many, many cartoon characters) is that she's kind of a name hoarder. She is combing through books and catalogs searching for minor characters in shows that she doesn't watch (eg: someone named Isa from Dora?), getting a new button for that character, and then never using it again. Like, ever. She seems to just be collecting the names.

This is a screenshot of one of the pages in her talker that contains characters.

There are a few issues here.

First, the reason that this is becoming so frustrating to me is because more than 50% of Maya's conversations at home now involve her calling our attention to a catalog or book, asking "who's that/what's that?" and then excitedly saying "Mini please!!!" (translation: make a new button for this right now!). If we make the button, she is extremely excited for about 7 seconds, then moves on to find a new character. It's exhausting. It's frustrating. I want to talk about other things. I don't even mind talking about the characters all day, honestly, if we did more than just name them. Which leads me to  . . .

Second, I have tried to think creatively, to redirect, to extend, to use these characters (which are obviously a huge motivator for her) as a jumping off point for other dialogue (spoken and via AAC) and she's not biting. I've tried saying "I don't know his name (because really, sometimes I don't) but let's talk about him! We could say that he is red, that he has a purple hat, that he looks like he feels happy, etc etc" and she just either pushes for a name (directing me to look it up online) or moves onto to someone else, in the hopes that I'll know the next character's name.

Third, and this is of substantially less importance to me, but I'll put it out there anyway as I think that it's a common concern for AAC parents: for an AAC user, vocabulary takes up physical real estate. I would rather not fill so much of her talker with minor movie and tv characters that we will likely never encounter again . . . but that's not really my choice, as I see it. Luckily, the app that we use (Speak for Yourself) has a lot of fillable space, and I imagine that if that space was ever filling it would be past the years of wanting all of Dora's friends to have buttons. I will admit to redirecting her when she's going page-by-page through a toy catalog and asking for each character, line by line, but if it comes up more than once it's hard for me to say no. (And I did attend a training once where participants were encouraged to help AAC users to think creatively to build words rather than adding large numbers of specific buttons, like "mad-gas-car" for Madagascar, but I think that's kind of disrespectful and would be really angry if, as a user, that's what I was expected to do. I won't do that to her.) I could make a low tech character board (a laminated sheet of paper---or multiple sheets) with tons of character pictures and names, but I'm fairly certain that she will just bring me the low tech board and the talker and direct me to add all of the names in, which puts me kind of back in the same spot.

So here are the two core questions:

1. How can I redirect her from spending so much time asking me to add character names? The best I can figure is to limit her access to magazines (like a certain amount of time per day) or limit her characters-per-day (like, we can add three new people tonight, but that's all).

2. How can I use this character love to drive vocabulary building? She still primarily uses her talker for communication via single words and some phrases, and I would love to use these characters to come up with some fun activities that will really get us using more core words, more verbs, more adjectives, more everything. The problem is that I'm lacking the specifics---which verbs/adjectives/question words would be best to target, how could I set up a few games or activities to target this? It's easy enough for me to make some laminated characters (printed, cut out, laminated) or character bingo sheets or  . . . anything.

I've got half-thought-out ideas for games where she has a character line-up and I model things like "She is wearing a dress. She is tall. She has green eyes." and then Maya picks the character----but then I wonder if that's too many different verb forms and whether there's something more simple and repetitive to start with, but I can't come up with it. Then I think about hiding characters around the apartment and modeling "Where is Mario? He is in the kitchen.  He is in a cabinet. Open the door!" etc and have the same questions about vocabulary

I'll make anything. But I'm overwhelmed at where to start, and rather than spend a few hours trying to sort this out on my own, I'm asking for ideas first. This is why one takes the time to build a network of amazing people, right?

I appreciate any and all input on this. Thanks from Maya, Belle, Lightning McQueen, Mike Wazowski, Dora, Spiderman, Abby Cadabby, Curious George, Maisy, Batman . . . and friends.

The Ghost of Playgrounds Past

The winter is ending, and the advent of spring has released dozens of toddler-and-caretaker pairs from their apartments and out to the playgrounds in our neighborhood. Will and I are one such duo, eager to get outside and play after a few dreary months spent indoors. Last year he was too small to really do much at the playground, and I had been looking forward to this season with him---big enough to run, steady enough to slide, mornings filled with fresh air and sunshine.

I knew that at the playground, I would be a first time mom again. Even now, Maya lacks the agility and balance, the self-protective reflexes and coordination, to explore freely at a playground.  I knew that Will’s playground abilities would develop rapidly, that his coordination and capabilities would be surprising. I knew it would be different, and I looked forward to that difference.

The playground was a loaded place for me and toddler Maya. It was bittersweet to the fullest possible extent of that word. The sweetness of doing something “normal”—not at the doctor, not at a therapy appointment, not doing exercises or assessments, just a mom and her little girl at the playground. But the bitterness (oh, the bitterness) of being different- leaving the safe bubble of home behind and seeing what other two year olds could do, could say, could eat, could . . . everything. They could everything. We sat on the equipment and watched kids race around us. She crawled, then walked with a walker, then walked with my catching hands nearby, and I was a focused assistant. She needed me so much. Will is already independent, running away, bidding me to watch and follow but shunning my help. So I watch and chase and play and smile and feel like I’m getting off so, so easy.

I didn’t anticipate that returning to the playground with a new toddler would trigger a visceral response---that type of physical memory that gets stored somewhere so deep that it’s beyond thought and ingrained on some sort of deeper, fundamental level. The way that revisiting the empty halls of your high school as an adult calls forward anxiety or wistfulness or nausea, or driving down the street that you grew up on kicks up the emotions of childhood. It’s not remembering, it’s re-feeling.

The moment I open the gate to the playground and push the stroller in the re-feelings start to rise, a familiar swirly tide of anxiety, determination, self-awareness, pride, sadness, protectiveness, bitterness, all pulling at my ankles. And then I look down at Will in the stroller, already trying to free himself from the straps and yelling “Uppy! Uppy! Uppy!” and I remember that I don’t need any of those feelings this morning. My feet are solidly on dry land, but the phantom tide feels strong enough to bring me to my knees.

I watch him play.  I’m on my knees.

I watch him climb and run. I wonder what the balance is between promoting independence and being neglectful, since Maya always needed me at her side, less than an arm’s length away. I side-eye the other parents, gauging the appropriate hovering distance.

I talk about typical kid things with typical kid parents. I’m an impostor, surely they can see that I don’t fit in.

I am amazed by his abilities, the way he moves and interacts. I narrowly resist the urge to look around and call to the other parents “Did you see that?! He did the slide like it was nothing! And look at your kid, climbing the stairs without your help! This is amazing! Are you soaking it in? Are you noticing? Are you waiting for the other shoe to drop?”

Because doesn’t this feel too good to last? Too easy?

Is this really how life is for most parents?

Do you people know how easy this is?

How lucky you are?

I mean, how lucky we are.

Where is the self-consciousness of having a toddler who doesn’t toddle? It’s over there by the swings, I think, where we would swing and swing and then sit in the shady patch with chalk and then . . . well, I guess we’ll just swing again. Where is the anxiety over rushing home and making it to the next therapy appointment? It’s right here, in the perpetual checking of my watch, in the way that I keep stopping myself from saying “2 more minutes” when I remember that really, we have the whole morning. Where is the awkwardness of avoiding small talk with other parents, talk of ages and milestones, favorite toys and favorite games, all seeming other-worldly? It’s there, by the park benches, where I used to feed her jars of baby food and try, so hard, not to overhear the conversations of the other caregivers. And it’s here, in the way that, without thinking, I avoid eye contact so as to not accidentally stumble into a conversation. Where is the angst, the sadness or frustration or this-isn’t-fair-ness that I would push down but remember later, in the dark, when I couldn’t fall asleep and couldn’t block it out any longer? It’s here, right here.

Oh, it’s here.

And I don’t know what to do with it.

Oddly, it hurts more now than it did then. Back then I was sincerely happy to take Maya out to the playground, and I was good at focusing on the positives and enjoying our time together. But now I see what it is like to be the mom I would have been, and I’m realizing that the playground experience that I had a few years ago was a shadow of the experience that I’m having now. And it hurts. I have pity for my mom-of-toddler-Maya self, and I have hatred for having self-pity. I have sadness that our experiences together were more difficult, more lonely, more stressful than my time with Will is going to be, and I have guilt over that sadness. I have happiness that I get to be the mom that I would have been, and I have sadness that Maya doesn’t get a re-do, that her one shot through those years is done, that she had her toddlerhood and it will be very different than her brother’s.

I thought this restart would be refreshing. It would be a chance to do motherhood in the normal way, to blend in, to not be set apart. But now, given the opportunity to blend, it feels like fraud. I find myself wishing that I had battle scars, visible and raw, something that would let people know that the my parenting path has not been theirs, it’s been thorny and rocky. A scar that is jagged, and fresh, but only occasionally slightly visible, peeking out from the neckline of my shirt when I move in certain ways. A scar that makes my outside match my inside, that relieves the feelings of fraud by giving a heads-up to the other playground patrons that though I am here having fun, not talking about my scar, I am nursing a wound. That I am sore, that it’s still a little raw, and that I’ve gone through something.

I’m going through something.

This is going to be painful, this business of reliving motherhood.

But I think that it’s also going to heal me, in some small dark places that I didn’t realize were in need of healing.

If you related to this, you might also relate to this (which is my favorite blog post, ever) and this (other playground reflections). 



    

Speak for Yourself is 50% off TODAY ONLY

The Speak for Yourself communication app is 50% off today only, in honor of Undiagnosed Children's Day. This app can start small enough to be used by babies, and grows large enough to be used by adults. On sale today for $99.99.

This link will take you to a page with a link to a blog post that explains why this app tops the other big name apps: The Best Communication/AAC app.

 And this link will take you to their iTunes page:  Speak for Yourself in iTunes.

An iPad case that's toddler-proof

Disclaimer(ish): The folks at Gripcase emailed me to see if I was interested in trying out their case and writing a review. Their timing couldn't have been better, as Will was starting to use our full-sized iPad and I didn't love our current case. This was the first time I've ever accepted a "would you like to try and review" offer, because I don't want to be advertise-y, and I'm not interested in trying a lot of things anyway. (Who has the time to try a lot of things?) But I had been intrigued by the GripCase since I saw Ellen's review (over at Love That Max) last year, so I thought, well why not. Turns out, I really like this case. I wasn't compensated for this review or my opinion, but I was provided with the case, their stand, and their carrying strap. 

NOTE: This case was to be trialed on our iPad2 . . . formerly known as our "play iPad", now turned into Will's talker. Maya's talker remains housed in the amplified mini iAdapter, as I believe that dedicated AAC devices must have amplification (and the iAdapter is currently the only solidly amplified case). 

When the Gripcase arrived, I was skeptical.

front

back

I couldn't find the instructions on how to install the iPad into the case, and then I realized that, quite simply, you just slide it in. So I did. And I thought "I never should have agreed to review this thing, because it feels like it is made of air and my iPad will surely be destroyed within the first hour of putting it on."  Remember now, this is an iPad2, our "play" iPad that had become Will's talker iPad. So the primary user of this device is an 18 month old boy. He literally does not understand the meaning of the word gentle.

But he couldn't wait to get his hands on it. 

Or, rather, one hand, as the other was used for clutching of his little monkey.

And then he realized that it was light enough to run around with, and the handles made the running-and-carrying easy.

Then he took a break because he had important things to talk about.

And the next morning we tried out using it with the stand:

That's also when he realized that if Mommy is trying to take the iPad away, say, to take a picture of it, the handles are really great for tug-of-war:

In the past we have used the following cases: the Otterbox Defender, the Griffin Survivor, the Gumdrop, the iAdapter and the iAdapter mini. As mentioned above, if you're using an iPad (or iPad mini) as a dedicated communication device, I recommend the iAdapter line. If you're using an iPad with kids for other reasons (or you're saving up for an iAdapter) then I think the Gripcase beats the other three mentioned above, easily. (We had used the Griffin Survivor on our iPad for the past 2 years, but we're sticking with the Gripcase now.) Here's why:

Pros:

Weight: The Otterbox and Griffin are super-protective, but super heavy. Like, really heavy. The Gripcase is amazingly light. It's made of some foamy/rubbery material that feels like nothing. I was tempted to throw it like a frisbee (it would have gone far, but I am an awful frisbee thrower).

hang-on-the-plastic-stroller-clip light

Handles: Those three other cases do not have handles. I didn't think about it before I saw it in action, but handle really (really) decreases the drop-ability of an iPad. Will can (and does) run around here at full speed while carrying the iPad behind him with one hand, and he rarely drops it . . . 

Durability: . . . except when he drops it. Most famously, he will tuck the iPad between his car seat and the car door so that when I open the door to take him out . . . bam. Right to the ground, from SUV car seat height. It's happened an embarrassing number of times, along with a few falls from the couch, a few angry throws, and some general clumsiness. Also, he likes to stand on it. And, amazingly, not a scratch. When the iPad lands vertically (as in, the handles hit the floor) it bounces (really). And when it hits horizontally, it tends to land face down (which sounds bad, but it's got a concave shape so that the screen is held up off of the floor). 

The Stand: It's sold separately, but it's really good. The Griffin stand snapped from us pushing the buttons on the communication app. This one is lightweight and really good. The only issue is that it doesn't fold or anything, so it might be a little bulky for travel. Small price to pay if you've gone through multiple flimsy stands, though.

It's difficult to see, but the screen is actually lifted up off of the table here.

Cons:

Screen protection: I bought a adhesive screen protector and put it on the iPad, because there's no component that covers the screen with this case. The Griffin Survivor has a hard plastic covering over the screen, but is lacking in the "pros" mentioned above. 

Size?: I mention this because I was initially startled at how much bigger it seemed than the other cases. However, it still fits in a (standard size LL Bean) backpack and doesn't seem big anymore, but there was definitely a moment of surprise.

Amplification: I mentioned it above. For a dedicated device, you really need amplification. That being said, this case is definitely louder than the Otterbox, Griffin, or Gumdrop cases because they have a little cut-out so that the speaker isn't covered. 

That's about it.

They sent us a carrying strap, which connects to the case in a really interesting novel way. This is what it looks like when attached. We generally keep the strap off, as Will is very short. 

Also of interest: they have a "Buy One Give One" program in which they will donate a Gripcase to a school of your choice for every case that you buy. If you're buying for a school district, this would come in particularly handy.

Of all the cases we have on hand, our iPad is going to stay in the Gripcase, which is basically the biggest endorsement I can give it. I really didn't expect to like it as much as I do!

The Best Communication/AAC App*

When it was time to pick an AAC (augmentative and alternative communication) system for Maya, I kind of didn't know where to begin. It was 2010, she was somewhere in the neighborhood of 2.5 years old, and I was already a little (ok, a lot) bitter that no one had suggested looking into AAC before I discovered it on my own. (We had been receiving therapies by the bucketload since she was around 10 months old.)

The iPad had been released several months earlier, and Maya was fortunate enough to receive one from relatives who knew that it could open communication doors for her. We quickly bought "the best communication app" around, downloaded it, and then thought "ok, now what?" (AAC experts are quick to point out that having a communication app doesn't make you a good communicator any more than having a piano makes you a good pianist . . . it's all about modeling, teaching, and practicing.) I fumbled around, making page-based digital boards (like, I made a folder for "food" and then a folder for "breakfast" and then a page with breakfast words). I didn't know what I was doing, but it worked . . . until it didn't. Maya could easily select what she wanted to eat for breakfast, but she couldn't talk about her day. She couldn't tell me what she was thinking. She wouldn't learn to use verbs or construct sentences (other than a very few simple ones). The system fell apart.

We moved on to plan B. I wanted her to have a dedicated communication device, or an SGD (speech generating device). The speech people that I consulted with (typically over the internet) who knew apps and knew SGDs clearly favored the SGDs, and I did too. They were designed linguistically, by SLPs or language experts (or both), and they were set up in ways that made sense . . . ways that lent themselves to appropriate, meaningful language growth. Everything had been considered---grammar, verb tenses, the things that I couldn't even think to anticipate because I have no linguistic background. I even wrote about how Maya wasn't going to be a long-term app user, that as soon as she was ready she would move to a dedicated SGD.

Until I had the representatives from the big communication companies come to my home, to show me their product lines (now we're in fall of 2011, a year past our initial app acquisition). As it turned out, the devices were (crushingly) not what I had hoped for. One company's entire line didn't make good linguistic sense to me (oddly enough, this is the company that seemed to provide most devices through the preschool assistive tech evaluations in NYC). There were pop-ups, there were (a bazillion) folders, sometimes when you wanted to exit a page you had to tap in one corner, other times that button was somewhere totally different. No good.

The other company had potential, and the wise words of a fellow AAC parent had led me to suspect that I would favor their devices . . . and I did . . . but they still weren't good enough. Their simpler device (geared toward younger users) was too simple, and Maya would have outgrown it too quickly. Their more advanced device (which serves people into adulthood) was too advanced for a 3 year old. There were still too many layers. Without drowning in specifics, there was a shifty top row that would have been initially tricky, and there were often times still too many screens to navigate through to find the desired word. The language system was brilliant and the consultant was lovely, but it wasn't a fit. And, at upwards of $8000.00, we couldn't gamble on the fact that she "would probably" grow into it.

So we had nothing. I begged online, hoping that somehow, somewhere, I was missing an app that would be a perfect fit---designed with linguistic development in mind, simple enough for a pre-literate 3 year old but designed in a way that would allow it to easily grow with her into and through adulthood (if she continued to need AAC support). Seven weeks later, that app (Speak for Yourself) came onto the market and changed everything for us.

These are the reasons that Speak for Yourself (SFY) is, in my (only sometimes) humble opinion, is the best communication app on the market:

1. Only Two Taps: In SFY it only takes two taps to say any word. ANY WORD. Eat? One or two taps, (depending on how you customize). Waffle? Two taps. (None of this "eat"-"food"-"breakfast"-"waffle" folder organization). Tyrannosaurus rex? Two taps. (Seriously.) There is no other app or device that allows you to program EVERY word as a two-tap word. This alone would have sold me, really. It lets the AAC user speak more quickly, it makes things easier to remember and find, it's fantastic. Two taps, any word. Awesome.

2. Motor Planning: One of the biggest frustrations with other apps (and some SGDs) is the fact that they don't take motor planning into account. Example: If your child is using a screen with four words, those four words fill the whole screen. If you want to change to six words, everything moves, and the child is left thinking "wait, yesterday "eat" was in the upper right corner . . . where the heck did it go?" I wrote an entire post on motor planning and why it's amazing, including a video clip of Maya unknowingly showing the power of motor planning. There are only two apps that incorporate motor planning (SFY and LAMP:Words for Life). Some other big communication apps can be creatively programmed in a way to try to mimic this principles, I think, but that level of programming is out of my realm of experience and seems kind of mind boggling.

Combine these first two reasons, and it's already a clear stand-out. (As mentioned, the LAMP app does the motor planning, which puts it in second place, but it takes more than two taps to say some words, and it doesn't do some of the stuff that I'm about to list, so it remains a firm second.)

3. Simple to complex, easily. When Maya started using the app she only had a handful of words open. Now she has hundreds (thousands? I really don't know). Opening new words is easy, and the programming is something that anyone can learn to do after a few minutes on youtube. My son started using this app at 17 months. You can start young (and should). (Video of opening/closing words)

4. The Search Feature: A little magnifying glass on the home page allows you to type in the word your looking for. The feature has text prediction, so if I am looking for "ball" when I type "b-a" words like baaah, baboom, baby, baby wipes are all popping up---along with the picture that accompanies them in the app (so a pre-literate child could scroll through and find the ball picture, even if all they know is that it starts with the letter B). When you tap the word, the boxes actually light up to walk you through the app to the word you're looking for. No other app has a search feature that is nearly as user-friendly and clear as this one, and I haven't seen any app that has a search feature that a pre-literate child could use. (Video of search feature)

4. Babble: I didn't understand the power of the babble feature right away, but Maya showed me quickly how important it is, and my 18 month old son is now a fan of it as well. The babble button allows the user to turn on all of the words in the app with one touch, and then have a grand old time exploring on their own and finding all sorts of fun words---without messing up your programming. Trust me, it's important. We would have had no idea how much Maya likes the weather (because I didn't have all of those words open) until she found "rainy" on her own and kept going back to it, over and over. (Video of Maya using Babble)

5. History Tracker: I don't even fully know how to analyze all of the data that you can collect with the history tracker (like rate of communication and number of words used) but what I do know is this: when I send Maya to school I cross my fingers that she's using her device. With the history tracker, I can actually see how long the app was active for, what was said, and what time those words were said. That's important to me. (Video of history feature)

6. The Basics: I guess I should mention that all of the basic things that I was hoping for are met with this app. Text-to-speech, a QWERTY keyboard, the ability to change the pictures that are in the tiles, the ability to use photos or internet pictures or whatever, the ability to change the pronunciation of a word if it sounds weird.

7. Bells and whistles: Maya is only 5, so we don't use the app to it's fullest potential. I like knowing that eventually she can send text messages from the app (if we make the switch to iPhones). The "Hold That Thought" feature is a unique way that a user can write a sentence (or paragraph) and "hold" it until they are ready to say it---great for answering questions aloud in class or giving a speech or even just talking with people and being able to say your whole thought at once instead of tapping it out slowly.

8. Support and community: The developers of SFY answer emails, respond to Facebook comments, and are tireless in supporting people with complex communication needs and their families. There is also a Speak for Yourself Users Group on Facebook, where ideas, questions, screenshots, video clips, and photos are shared and discussed.


Why am I writing all of this?

First, because I get a lot of "I'm starting to look at apps and I'm not really even sure what I'm looking for" emails. This is an easy way for me to lay out my thought process and why we chose SFY.

Second, because Speak For Yourself is half price on April 2, 2014 (sorry if you're reading this after April 2nd!). It's an amazing deal. I would hate to wake up to an email on April 3rd that says "can you tell me why you picked SFY?" . . . I'd be kicking myself for not laying it out for everyone to read.

Third, because I remember what it was like to spend all of my free time researching AAC, apps, devices, communication boards, PECs, etc. I was desperate for answers, hints, people to brainstorm with, anything. I hope this helps.


(in case you haven't seen it, this video shows Maya's AAC progression, from 2-4.5 years old, through signs, communication boards, PECs, and 2 apps)


*for most people, as far as I can figure out. While it is switch accessible it doesn't yet work with eye gaze, so there's that. 

Disclaimer 1: I am not affiliated with, nor do I represent, Speak for Yourself. I do not have a financial relationship with them and have nothing to gain by writing this. They were unaware that I was posting this until after it went up.

Disclaimer 2: If your child/client/parent/friend successfully uses a device or app that I seem to not be a fan of, then I am truly happy that they have a working system. This is not an attempt to badmouth other systems, but rather an attempt to reach families who want "something" but can't even figure out what features to compare and contrast while looking at a surprisingly crowded field of communication apps and devices.

Disclaimer 3: I'm not a professional, just a really educated mom. I'm going back to school to become a professional, but it's pretty early in that game.

AAC by 18 months

I have taken part in a lot of conversations about using AAC (in online forums, in real life, and via email) and one of the most popular reasons that I hear about waiting to try AAC with a child is age. Here are some samples:

"C is only 4, no one in the preschool knows anything about AAC so we're going to wait until she can be evaluated in kindergarten." 

"He just started kindergarten and the teachers are getting to know him. They plan to submit a request for an assistive tech eval at the end of the month." 

 "He's three and a half and I wonder if he might be able to use some AAC but the speech pathologist says that he's making steady progress so we should hold off until he's a little older." 

When people ask when we started using AAC with Maya, I'm as honest as I can be (because really, it's hard to remember). I know we were doing some picture card stuff (and signing) before we got an iPad. I know we got the iPad when she was 2.5 years old (only 5 or 6 months after its release, so we couldn't have moved much faster on that), and we started using a communication app immediately. Over the course of the following year (2.5-3.5 years old) we did a mish-mash of that app (which had turned out to be less than ideal), the Word Book, a trial of another device, and probably some things that I'm forgetting. Finally, at 3.5 years old, we found the Speak for Yourself app and ran (fast) with it. (This video shows our communication highlights from 2 yrs old to 5 years old. )

So, at 2.5 years old we were experimenting and practicing and encouraging and trying to figure out a system that could work . . . and at 3.5 years old we found the system that could work (and we literally couldn't have found it sooner---I think we downloaded the app only two weeks after it was put on the market). 

We should have started sooner.

I hate that we didn't start sooner. I'm not one to hold a grudge, but on this I do . . . one of Maya's therapists (we had a bunch of them) or doctors (boy, we had a bunch of them) should have told me, at her first birthday or shortly thereafter, when she clearly wasn't near ready to speak (no motor planning, minimal sounds, etc) "Hey there are some other ways of communication out there---some stuff with technology---and you might want to look into some of it. Or at least put it in the back of your mind."

Why didn't anyone tell us that we should have started so young? Well, for one, iPads didn't exist when Maya was 1, and maybe doctors weren't familiar with the stand-alone devices (many of which wouldn't have worked for a 1 year old anyway, with their non-toddler-friendly organization). The therapists should have known though---high tech or low tech or photo cards or something. Something.

Someone should have told us to start younger. Someone should have been aware of the communication options out there. Someone should have known that the research says to start young. Someone should have told us that there was a way that we could be providing our silent child with a voice, a way to tell us all of the things that she wanted to say.

And so here I am, years later. I am aware of the options out there, and I am aware of the research, and I am telling you to start young.

Start now. 

The title of the blog post came from the recommendation of a highly respected AAC expert, when she was asked about the appropriate age to introduce AAC to a young user. And that's not start around 18 months, that's you should really be on it by 18 months. 

Sound crazy? Think it's too young? Let me introduce you to Will.

Will is the (almost) 17 month old little brother of Maya (a 5 year old AAC user). He has been tangentially exposed to her talker since birth, although most of his hands-on interaction with it consists of "Hey! Will!! Do not take Maya's talker, it belongs to her!" and then I take it away, and then he cries. Yesterday morning, after several of these encounters in a row, I got our "play" iPad out and locked him into the communication app (using guided access). I configured the screen appropriately for a very young user, with mostly 1-hit core words (yes, no, mine, more, help, eat, drink, please) and one highly motivating category (family, which has pictures and names of many family members). After less than 3 minutes, he was using the app purposefully, and I grabbed my video camera and started recording.

(almost) 17 months old. (almost) 7 minutes. 

Is this typical? Who knows. (How could we define "typical" for an AAC user anyway, as that population is basically complex by definition). Will has the benefit of understanding (from birth) that this device is a voice, it's used to talk, etc, so we didn't have to help him connect those dots. Also, Maya's fine motor skills were no where near his at this age, so she would have been a much slower user . . . but how quickly would she have had the excitement of at least understanding the idea---that she can boss us around, say what she wants, ask for something that isn't close enough to point to? It's amazing!

In the next two videos, taken about 10 minutes after that first video, he is already moving past exploring the words and using a combination of AAC, word approximations, sounds, and gestures to tell me that he wants to call Grandma on the phone---something that he wouldn't have been able to communicate without AAC, as he doesn't have a vocal approximation for "Grandma" that I would understand. (He's starting to get it in the "part 2" video and really nails it in "part 3.")

He used the talker all day yesterday. When he woke up this morning, it was the first thing he was looking for---to tell us that he wanted to eat and then to have a drink, to ask again to call Grandma on the phone. He has a voice today that he didn't have yesterday, and he knows it. I think about the parents out there who have kids who are 3, 4, 5 years old . . . or 8, or 12, or 18. The parents who are waiting because they don't have anyone telling them to start young.

I'm telling you to start young.

This was my favorite video, which takes you through the complete learning of a new word. I hadn't used "drink" with him at all before the start of this video. We kept things light and fun and silly and boy, did he learn "drink" quickly :)  Enjoy the giggles.

If you are thinking "well, easy for you to say, he's a "typical" kid without delays" . . . well, you're right. But I was told that Maya's cognitive functioning was in the 0.4th percentile, and I believed that she could do it, too. You may have to model for a while before your child responds---but we speak to kids from the moment they are born and don't expect them to talk back for nearly a year. I modeled sign language to Maya for months before she signed back. This is even easier than that---you don't have to learn signs, you just tap a button now and again as you talk.

AAC by 18 months. If your child is older than 18 months, and you're wondering when to start, the answer is now. If your child is younger than 18 months, but old enough to know that you are dealing with a significant speech issue, and you're wondering when to start, the answer is now.

(And if now you're ready to start but don't know what to do next, check out this and also this.)

Communication Before Speech

Yesterday I wrote something new, an all-star compilation of my favorite thing to argue about promote discuss. I liked it so much that I made it a stand-alone page at the top of the blog . . . but that means that if you subscribe to me or read me through an aggregator, it probably didn't register that I had put up something new (since it wasn't a new "post").

So here's the hyperlink, check it out:
http://niederfamily.blogspot.com/p/hi-if-youre-here-i-likely-crossed-paths.html

Top 3 of 2013

Since I've only mustered the energy (physically, emotionally, cognitively) to put together 23 posts this year, doing a Top 10 list felt . . . cheap.  Here instead are the 3 top posts from this year, as determined by reader comments:

#3: "An Open Letter to the Parent of a Child with Speech Delays": In which I say the time for AAC is now. Do not wait for the experts, you can do this.

#2 : "I need a new word": In which Maya tells me that she needs me to add a new word to her talker, and I struggle to interpret her clues as to what the mystery word is. (Hint: There is a triumphant ending.)

#1: "Adding (bureaucratic) insult to (permanent) injury": In which I lay out the outrageous (truly, truly outrageous) process that we had to go through to renew Maya's NYC parking permit for people with disabilities.

See you all in 2014 :)

(Also, if you're not already following the Facebook page, I manage to get on there and chat much more frequently than I manage to put together new posts.)

Life hasn't been easy, and I am thankful

Recently, life hasn't been easy. It’s made me so thankful.

(That is not as disjointed as it may seem.)

I wish that I was generally grateful by default, but I’m not . . . which, I think, is pretty common. Maybe the resting state of not-perpetually-grateful is necessary for function, akin to the way that nerve endings become desensitized to a stimuli. In case you're not a science nerd, here's an example: when you put on a new sweater you may think Wow! This sweater is so soft! A few minutes later, the softness of your sweater is a thought of the past, and this is a necessary reduction. If you were constantly appreciative of your sweater’s softness, you wouldn't be able to finish a thought . . . “Ok team, in our meeting today---wow! Guys, my sweater is unbelievably soft!” Similarly, if you were perpetually thankful, your gratitude would be literally overwhelming . . . marveling at the wiring in your home that makes electricity possible, the drinkable water that comes out of your faucet, the strength and functionality of your non-broken legs, the fact that none of your fingers currently has a paper cut, etc.  

In this way, I've come to believe that the times that I am most thankful, most appreciative, are the times when I am existing in the neighborhood of a crisis . . . not really in a crisis, but close enough that I can see it, smell it, feel it in the hairs on the back of my neck. To use a mild example, it’s like when you are feverish and sick and can’t breathe through your nose and then suddenly you realize that your advil wore off a while ago , but your fever isn't back yet . . .and did you just manage to take a breath with your mouth closed?  That’s a moment in which you are thankful for the possible return of the health that, three short days ago, wasn't a blip on your gratitude radar. It’s like having that soft sweater pulled off, and you’re chilled and exposed, but only for a few seconds before you get it back and put it on and re-savor the softness and warmth, which seems even better than you remember.

Recently, life hasn't been easy. It’s made me so thankful. 

* 

My five year old daughter can’t speak, but can communicate a great deal of her thoughts with her communication device. She often, however, shuns the device around new people and places, and she started kindergarten (in a new school) this fall. Sure enough, on many days I've heard that she was disinterested in using it in the classroom----but her teachers are annoyed by this (as opposed to indifferent). They know that she is capable and are quietly frustrated that she won’t demonstrate her abilities, and won’t communicate with them. I am thankful for their frustration, as it speaks to their investment in her, and their belief that she-can-do-more.

*

Maya meets with a reading specialist once a week. She brings home a folder of homework, new word families each week. We sit together to work on the worksheets, and while her focus is hit-or-miss, her knowledge surprises me every time. She will be a reader. She will be able to spell, to write. For a child who can’t speak, the ability to spell and type is invaluable . . . and I can see that she is on her way. I am thankful.

*

“Laundry mountain,” as I unaffectionately call the monstrous pile of clean-but-not-folded-or-put-away laundry on our couch, has grown to a size that leaves it often oozing off the couch. The kids help by running over, holding up pieces, and declaring their rightful owner (that’s Maya, holding up a sock and yelling “Will!”) . . . or by grabbing armfuls of clothes and toddling across the floor, leaving a trail as pieces drip from his grip (that’s Will). I re-gather and re-build the mountain, pulling out pieces as we need them. I’m thankful that at least most of our stuff is clean, and that dragging laundry around the living room has kept everyone distracted for long enough for me to slip away to the kitchen and get another cup of coffee.

*

Will has been growing, progressing, meeting milestones, and just being a “typical” one year old. It doesn't escape me, this typical-ness. I watch him toddle across the floor and find it amazing that anyone so small can walk upright. I see him use his tiny fingertips to pry open containers that I thought would keep him out, and I am blown away by how he enjoys the fine motor work that didn't (and still doesn't) come easily for his sister. I hear him, already, mimicking the words that I say to him, and using his voice to demand “more!” (or, more accurately,  “MORE! MORE! MORE!”) and I am thankful, for the challenges that he won’t have to face, for the way that his road has been paved and smoothed for easier traveling.

*

Maya has seen 3 new specialists this fall. Each appointment raises the anxiety of meeting someone new, a doctor who may or may not listen patiently as I try to summarize my child’s mile-long medical history in three-minutes-or-less. Each appointment forces me to square my shoulders and act strong enough to face new fears, as I lay down some piece-of-information-that-has-scared-me-enough-to-make-it-necessary-to-brave-a-new-doctor.  Each appointment is accompanied by various medical tests, with varying degrees of invasiveness, and so each has raised that am-I-doing-the-right-thing-guilt, the guilt that all parents face but somehow special needs parents seem to face more frequently, and with more on the line. But, so far, none of the issues that we've faced are life threatening, and I am thankful, so thankful.

*

The adrenaline crash after each new appointment leaves me in a tired-to-the-core, dazed-and-disoriented type of way. I am thankful for the days that Will naps and I get to doze, or for the espresso-and-sugar concoctions that warm my hands and wake me up (in theory, anyway) on the no-nap days.

*

Maya had a seizure today, a first, unexpected, with no warning signs or cause or hint that anything was coming. For 10 seconds, I was all-response-and-no-thinking. For 40 minutes of recovery, I held her and spoke calmly to her and didn't let her know that that everything had changed, that the ground beneath our feet no longer felt solid and strong, and that my seemingly irrational fears of the potentially-serious-health-complications-that-could-come-with-being-undiagnosed were now legitimate. I held her and I thought that I could have lost her just then. And for the rest of the day, I was thankful in a way that no parent-who-hasn't-thought-that-they-might-lose-their-child-before-their-very-eyes can possibly understand.

*

It’s been 2 days since my daughter’s seizure, and yesterday I found myself constantly watching her, searching for reassurance that everything is fine, that she is safe, that she is alert, that she is with me.  This morning my heart sped up when I saw her step unsteadily and stumble and tense, but she caught herself and kept walking and I saw that it was her “typical” unsteady gait and not a spasm or seizure.  I am thankful.

*

It’s been 4 days since Maya’s seizure and this morning I didn't think about it, or picture it, or have a little re-living it flashback for several consecutive hours . . . and I realize that time has started to work its magic (its healing-magic or its you’re-too-old-and-stressed-to-remember-everything magic , whichever one, they both work the same) . . . and I am thankful.

*

We spent four hours commuting today, because we still don’t have a bus. We hit a long stretch of heavy traffic, but when I said “Oh, look at this traffic!” Maya piped up from the backseat “Oh no!” and we laughed, and then Will laughed because we were laughing. We made it on time and no one cried.  In the afternoon, on the way home, we saw some Christmas decorations in a store window and Maya shrieked excitedly, and I was grateful that today there was no bus, and  that I got to share the time with her, to hear her first exclamation of holiday delight.

*

Tomorrow we return to the scariest of specialists, the neurologist, whom we haven’t had cause to visit in 3 years, 364 days. When I made the appointment it seemed the perfect distance away:  four weeks. Far enough away to let it fall to the back burner of my mind, but close enough that I wouldn't worry that we were waiting too long to be seen. I have been thankful for every day pre-appointment, for every day that I didn't have to agonize over potential future tests, that I didn't have to know what the doctor thinks about her seizure, that I can try to pretend this was something small that we can just ignore. I loved every one of these days.  I’m also thankful that whatever the news is, we have an amazing doctor, one who is smart and worth trusting. (And because I’m the type of girl who needs to have a back-up plan, I’m also thankful that we live in a big city full of smart second opinions, if need be.)

*

Having a child with an unknown medical situation means that life is lived in equal parts don’t-overreact-things-are-probably-fine and holy-crap-things-might-be-the-complete-opposite-of-fine. I am thankful for the other parents who share their stories, who remind us to celebrate the good stuff. I'm doubly grateful for those whose stories remind me to shut-up-and-be-thankful-for-every-freaking-second-because-it’s-easy-to-forget-that-the-seconds-are-numbered**. Earlier this year my friend Kate suddenly lost her son Gavin, a little boy who was the same age as Maya, also nonverbal, also full of spunk and life and love, and it spun my whole world around---I am so thankful for that (thankful for the reality check, obviously, not in any way thankful for the loss of Gavin). Because having a child like Maya can be a lot of hard work, a lot of heavy lifting (literally and metaphorically), and it could be easy to think “it’s not fair that things are so hard for us” instead of “we have no idea what tomorrow brings, so I will just be happy that today things are (our) normal, normal enough to feel exhausted by and tempted to complain about.”  

**As an important note, Kate is far too encouraging and lovely to think that anyone should “shut up and be thankful” . . . I am not that encouraging and lovely, and I tell myself to shut up and be thankful all the time J That sentence (and sentiment) belongs to me, not her. 

Recently, life hasn't been easy.  It’s made me so thankful. 

Happy (early) Thanksgiving. For those who are in the crisis zone, may this pass quickly. If you're in the neighborhood of a crisis, may your travels lead you in the other direction, without having to get an inch closer to the bad stuff. And if you're lucky enough to be in crisis free territory right now, soak it up. Don't lose sight of how soft your sweater is. 

Running to stand still

I am overwhelmed.

This fall has been . . . hard.

I am on the treadmill of life, running  to stand still . . . and I’m not really even managing to do that. Every time I find my footing and start to gain ground, the speed picks up, and I am flailing.

It started with the busing. 

(The treadmill starts, a brisk walking speed.)

At the start of the school year, we had no usable busing. We were commuting for 4 hours a day (which includes diaper change time, parking time, traffic allowance time, and talk-to-the-teachers time). It felt unsustainable . . . Will would cry in the car, I slipped into driving with the assertiveness of an NYC taxi driver, and I thought about all of the work I could be doing instead of driving.  (I haven’t managed to bill a single hour since August, by the way.) I studied for exams by flipping through flashcards while I waited at stoplights. We play a lot of I Spy. My car became a great site for an archeological dig, with layers of toys (thrown over my shoulder at Will), snacks (thrown at everyone), and other random detritus (Maya’s a big fan of picking of leaves and then shredding them, so that’s fun). 

Two months later, we still have no busing, through a combination of DOE ineptitude (one (temperamental) person is in charge of all of this? And she doesn’t know what to do? And she doesn’t return phone calls or answer her phone? Really?) and the fact that a few weeks ago I stopped calling to follow up. Kindly save your “call a lawyer!”s or “I would just go to the office and sit there until they fixed it!”s . . . because I have and I did, and it hasn’t worked. I understand and appreciate your sentiments, and I would likely be very “Well-I-just-wouldn’t-stand-for-that-if-I-were-in-your-shoes” too, if I wasn’t all too familiar with the belly of the beast. Huffing and puffing and lawyers and noise sometimes works, and it sometimes doesn’t, and  . . . well, and then everything else happened.  And suddenly the fact that I’m in the car for a few hours a day was at the bottom of my problem list.

Maya’s transition to a new school has been rough. (Kick that treadmill speed up a few notches)

She is funny and silly and social. And defiant and strong-willed and anxious. She is a lot of work. While many parents have kids who are well behaved at school and then raise hell at home, we have (mostly) the opposite. (Don’t get me wrong, she can be a handful at home as well, but she works with me much better than anyone else.)  This has resulted in a large amount of communication with the school---chats at drop-off and pick-up, notes in the communication notebook, troubleshooting emails with teachers and therapists and the school director and the behaviorist, meetings (spontaneous and planned), and observations (her classroom has an observation booth—cool, right? I have spent a lot of time in that booth.). 

This is stressful, obviously. I worry about her lasting at this (very good) school. I worry about where she would end up if she wasn’t there. I worry about her long term education plan, as I would like to see her in a larger, inclusive classroom in the future, and her choices right now make it difficult for me to envision that happening. I worry that her staff won’t like her (not that they would treat her poorly, but that she would be that kid---you know, like if she’s absent the teachers would be like “Yes! A day off!”). I want them to see what I see---so much cleverness and silliness and possibility locked in a body that doesn’t work quite right and anxiety that makes her freeze up. I need them to believe in her, to enjoy her, to push her. I worry.

And she won’t use her talker. (Go ahead and increase the speed again.)

This isn’t a big surprise, but it’s frustrating nonetheless. As she speaks more and more, she pulls away from the talker. Whenever she is in a group setting (school, relative’s house, etc) she pulls away from the talker. She’s a sponge, a watcher . . you can see her wheels turning, but she doesn’t jump in easily. (That’s the way that I’ve always been, too---so I get it.)  Couple that with the fact that if someone new prompts her to use the talker, she may very well refuse on principle, or because she’s anxious (see above) and now it becomes a potential power struggle.

And then the medical stuff started. (The speed increases. I’m barely hanging on.)

The medical issues were all new (or new-ish, existing in lesser forms in the past but now coming to a head). We added two new doctors to our list last week (a GI and an endocrinologist) and tomorrow will gain a third (urologist). Every issue falls into the grey zone of could-be-no-big-deal-but-in-rare-cases-could-mean   . . . and that means a lot of tests and following things closely, because Maya likes to be a rare case.  She missed a few days of school while we dealt with one issue, missed another few days for appointments and illness, and I feel like we can’t catch a break.

I forgot about the panicked fear that accompanies new medical concerns. We’ve been at a medical cruising altitude for a while, autopilot on, just cruising along. I forgot about the way that a new medical situation shakes your whole world. I forgot about the exhaustion of introducing Maya to new doctors, the mind boggle that happens when they say “So, tell me about Maya” and I freeze, because where do I start? And what do I tell them? I can’t spend 2 hours listing every little thing---what if I forget to include some weird detail that turns out to be critically important? I forgot about the google dance---the way that I refuse to google symptoms and syndromes, because I don’t want to worry and I want to let the doctor handle it . . . but then the way that I feel a responsibility to google and research because I know Maya’s laundry list of signs and symptoms in a way that no doctor will be able to figure out during a consultation. 

I forgot about the anxiety that slowly builds as an appointment gets closer, the adrenaline rush of appointment day, and the no-amount-of-coffee-will-possibly-help crash that happens after you leave the appointment, regardless of whether the results were good or bad (or, most likely, ambiguous, with a follow-up to be scheduled in a few weeks).

Last week, we met with the new GI. Good appointment, thorough, and at the end we had created an action plan for moving forward. As the doctor and I pulled our chairs together to review the papers, Maya tensed up next to me and started to lower to the ground. I thought that she had started to lose her balance and decided to sit on the floor, but I looked at the way she was moving and something didn’t seem right.

And then I realized that she was having a seizure. 

(And the speed hits the max, and I fly off the back, and I fall to my knees, and I am done. Done.)

Maya is not a seizure kid. Prior to last week (a week ago today, actually) she had never had a seizure.  This was not on my radar.

In a former life, I was an EMT. I have emergency training, and (academically) I know seizures. I know to clear the space, not to put anything in the patient’s mouth, to let them lie in a safe position until it is done.

I was down on the floor in an instant and pulled her onto my lap. I spoke to her quietly but with an edge of panic in my voice.

I know that the vast majority of seizures are self-limiting, they end on their own. I have heard that the seconds feel long.

So, so long.

It was done quickly, but I can still see her curled, propped in the space between my chair and the examining table in the room, her hand shaking, her eyes staring ahead. And when it ended (quickly, maybe 10 seconds) she was disoriented, she didn’t turn to look at me, she was sweating and pale and nervous. She started to cry, and the doctor and I looked at each other in disbelief, neither fully sure what had just happened, both in slight shock. That minute of initial panic gave way to forty minutes or so of recovery, then hours of phone calls to the pediatrician (multiple times), the neurologist, Maya’s school, family (it was really fun to call Dave at work and break the news).

The seizure was the thing that stopped the treadmill. The straw that broke the camel’s back. The thing that brought me to my knees.

I surrender. I have been beaten.

But there’s an odd relief to surrender.

With every issue, the one that preceded it seemed smaller. Driving to and from school seems like a silly problem when your child starts behaving in ways that exhaust everyone, to the point that you worry whether she will alienate the people that (desperately) need to be in her corner. Bad school behavior seems small when you have concerns about your child’s health, are starting supplements, running tests, and googling potential new issues.  And the stress of running tests and meeting new doctors for potential health problems that will be manageable with supplements or medicines or surgery or whatever suddenly seems very small when your little, ponytailed five year old has sunken to the floor and is seizing in front of you.

Very small. So very small.

The problems are still there (and more, bonus run-of-the-mill problems: piles of laundry, an apartment that devolves around me much faster than I can attempt to clean it up, bills that aren’t paid on time, etc), but they seem so much less important. (And I also know that the past year or two of medical cruise control were a luxury that some families don’t get.)  Now I have the biggest problem, the fear of medical unknown. I haven’t been nervous about Maya, medically, in years----but this is the reality of an unknown genetic syndrome. It’s the gift that keeps giving. Will she have more seizures? I don’t know. Are seizures typical of her genetic syndrome? I don’t know. Could they increase in number? In severity? I don’t know.

I know that tomorrow we will meet a new doctor and possible run some tests, and that at the end of the month we will see the neurologist and possibly run some tests. More importantly, I know that tonight, we are all home and safe. I know that Maya had a good-ish day at school, and that Will didn’t cry at all during our commuting time.  Maya was silly after school  and Will is toddling everywhere with his little Frankenstein-ish waddle. The kids are tucked in and dinner is done and right now, things are quiet.  Tomorrow life will go on, and I’ll jog to stand still, but I’ll probably fall a little further behind and that doesn’t seem like a big deal anymore. I remember now that I can’t take anything for granted, even the crappy-too-fast-treadmill-times, and I’ll will my feet to keep moving and hum a little tune to myself and remember that nothing is forever, in more ways than one.