Friday, July 25, 2014

No One Knows The Words A Child Cannot Say

The disability world has its fair share of inspirational quotes. Some are actually inspiring, some are trite, and  a few are downright dangerous. The quote below (popular among some mothers of nonverbal children) falls solidly into the dangerous category.

"A mother knows the words her child cannot say."

First, this is inaccurate. While I wish that I knew the words my children could not say, that's just impossible. Come over any day this week and watch my almost-two-year-old rage against my ignorance by tantrumming loudly on the floor when I hand him the not-the-one-he-was-thinking-of toy from the too-tall-to-reach shelf. He'll be happy to point out that parents are not always accurate mindreaders. And he's only two. If I can't even predict which toy he wants when he's pointing and whining, how could I possibly predict the complex (and sometimes random) thoughts of my 6 year old, who has very limited speech? 

But more than inaccurate, there is a danger in quotes like this. This says "Mom, you've got this. Be secure in knowing that your connection to your child is stronger than language. You know what s/he can't say. Don't worry." But, well, that's clearly not true. I'm not a mindreader, and neither are you. And by sharing and promoting images like this one, we are (unintentionally, of course) spreading the idea that a) the child's thoughts are simple enough to be consistently accurately predicted and b) we shouldn't be (doggedly, enthusiastically, urgently) pursuing some sort of AAC that can provide them with a way to say exactly what they want to say, all of the time, to anyone.

So if this isn't an ideal image to share, what would be? I have a few ideas:

This is a bit more accurate:

Because it's not just about moms:

Because 80s rap enhances any meme:

In case you're not familiar with 80s rap:

This is certainly true for me:

And to include dads, too: 

And here's one if you're a really big fan of details:

For the dads, too:

And guess what, SLPs? While researching this post, I also stumbled across this dangerous saying, targeted at you and yours:

Don't worry---I made a new one for you, too:

Because the bottom line is this:

There. Much better.

Edited to add: The Facebook album of these memes also contains several others: for friends, teachers, therapists, SLPs, caregivers, ones that say "mum", and few others. 

These will be up in an album on our Facebook page, and also have their own board on Pinterest.

Thursday, July 24, 2014

They Said She Wasn't Ready (four times)

This post tells of the obstacles that we faced when we decided to pursue high tech AAC for Maya, and the ways that it has shaped her academic path. Some of it is kind of a review, but there's a great new video at the bottom, too. This relates directly to the (amazing) "Myth of AAC Pre-Requisite Skills" blog post that circulated earlier this week.

Maya and mini

My introduction to AAC came in a support group meeting (for parents of kids with special needs). I was talking about how I really didn’t know what Maya knew, or understood, and how I wish I could find a way for her to communicate. One of the moderators said “You should go see Mark, he does assistive tech” and the other nodded and agreed, and that night I went home and started researching and was blown away by the different systems and devices (and a very small number of apps) that were out there: a whole world that I didn’t know about.  

That was a kind of pre-obstacle in our path to obtaining AAC: no one told us about it. Too many parents are left on their own, with a passing suggestion or random message board encounter being their best chance at learning about AAC in the years-before-elementary school.

The first real obstacle, for us, was Maya’s age. She was 2 when we started pursuing AAC at home, 3 when we pushed for a DOE evaluation (useless) at her special needs preschool, and still 3 when the first app with truly accessible, long term language possibilities (that could work for a preschooler and grow with her through adulthood) burst onto the market.  We believed that she could handle a big system, despite the DOE evaluator’s insistence that that was the wrong choice.  Her teacher sided with us, and we decided that it was best to ignore the DOE (who had recommended a boring, static, cumbersome, only-able-to-hold-32-words device) entirely.

The second obstacle was Maya’s fine motor skills. Namely, that she had very little fine motor skills. At 6 years old, she still can’t hold a pencil correctly and write letters, or use scissors. She doesn’t have the hand strength to open a clothespin or to re-cap a marker. The idea that we wanted to put her on a dynamic screen of any type didn’t compute with the evaluators (“But how will she use this? You can see that she would have a lot of trouble hitting those buttons, or not hitting others accidentally.”). I mentioned a keyguard, which was acknowledged as possible, but the team seemed much more comfortable with the idea of starting with a few big buttons and working up to more and more (and shifting the vocabulary entirely around at each step). Apparently motor planning is a foreign concept in some circles. I was sure that if we could get our hands on the right system, we could think creatively and come up with ways to improve our direct access. (Spoiler: That’s exactly what we did, first with a glove and then a keyguard and then another keyguard.)

The third obstacle was Maya’s cognitive level. While her cognitive evaluation (which placed her in the bottom 0.04th percentile of her same-age peers) seemed laughable to us, and to her teacher, it was a clear data point for an evaluation team. And if 99.96% of three year olds are smarter than Maya, and they’ve never given a large AAC device to any three year old, then you can go ahead and bet that my kid won’t be the one breaking that streak.

Next, and perhaps most significantly (and frustratingly) came the biggest obstacle: negative behaviors. Maya is stubborn. She is willful. She is interested in doing only the things that she is really interested in doing, and it’s very difficult to coerce any sort of obedience or compliance if you are new to her (and “new to her” can mean that you starting working with her less than 6 months ago, more or less). She would not “perform” during the AAC evaluations. She would not show them what she could do (and, in a mindboggling twist, the team declined to view the extensive videos that I have of her independently using a communication book and apps). That led them to decide she wasn’t eligible for a big device with the reasoning that either she didn’t understand what they were saying enough to make sense of the device, or she wasn’t interested in it anyway.

Four big “reasons” that she wasn’t ready for high tech AAC. 

Four excuses that we ignored.

Instead of figuring out ways to clear the hurdles that they had laid before us, we walked away from their obstacle course and did it on our own.  (Not because we were heroic, but because hurdles are exhausting.)

We pursued AAC early and doggedly, because Maya had a right to say whatever was on her mind, whenever she wanted. No low tech system could provide her with that, so high tech was the only option, as I saw it. We were excited as she became able to request favorite objects, to make little jokes, to talk about the weather. We were delighted when she was able to come home from school and tell us who she played with, or what therapy she had, or what songs they sang that day.  But it wasn’t until a few months later, as we went through the “Turning 5 Process”, that we realized how fundamentally Maya’s early access to AAC was going to change her life.

“Turning 5” is the process in NYC through which children with special needs are re-evaluated and then matched with a school, and classroom, that fits the child. I am certain that without her talker, Maya would have been sent to a classroom that had very low academic expectations, and I witnessed this near-miss happen five or six times. This story, from a former blog post, describes those encounters:

During this process we were sent (by the DOE) to tour many schools, some of which requested that Maya also attend the tour.  We toured the facilities, heard about class sizes, and visited potential classrooms. The school personnel looked over her case, watched Maya boldly step into the classrooms, and smiled in a satisfied way that said yes-this-will-be-a-good-fit.  But when we returned to their offices, I put the talker in front of Maya, then ignored her and spoke with the other adults. It only takes a minute or two of ignoring before she starts speaking up (although if you try to interrogate her she can hold onto a stubborn silence .   As she tapped out a full sentence to request a snack or a drink, I could see a flicker---“oh, wait a second . . . “---and as I gently led her into more creative territory (what do you want to do today, who should go with us, what do you think we’ll see there, hold on---what day is tomorrow, again?) the flicker grew, and they were wide-eyed, surprised by this quiet girl who had tricked them.  And maybe (hopefully), surprised by their misassessment.
And, in a mere minute, a huge perception shift. In the following minutes, the comments that Maya “was too advanced” and “wouldn’t be a good cognitive fit here” and “clearly needs to be somewhere where she will be challenged” and “is full of potential, wow!”
In the space of only three minutes Maya’s achievement with AAC reshaped their perception of her as a learner which raised their expectations for her academic potential and offered her the opportunity to not be relegated to an ill-fitting, limiting classroom

Now Maya is 6 years old. She is starting a new year, in a new classroom, in a new school.  She is still stubborn, and the new team is slowly teasing apart what she knows and what she doesn’t know---which is, to varying degrees, a mystery to us all. Again, AAC is the game changer here, the light that helps illuminate some of her more surprising strengths. She is reading, although it’s hard to discern how much she reads, because her speech is still so amorphous. If a skeptic listened to Maya read, they could easily say “Well, that might not really be reading. I mean, I hear the starting sound, but who knows if she’s really saying the correct word? She might be saying ‘fish’ instead of ‘first.’” But when she uses her talker, it’s clear.  In this video she reads two sentences with her voice, and then I prompt her to read it with her talker, to check that she was actually reading the correct words.

She’s reading. The DOE said she was in the 0.04th cognitive percentile, and I'm sure that they would not have placed a kid in the 0.04th percentile on a track to be reading when she is five.They might not think that a kid who will lay on the floor instead of following directions is actually listening and learning, and no one would know that without the data that the talker provides.

AAC has given Maya a way to request and comment and give directions to those around her, and a way to tell me about things she sees and hears when I’m not around. And, in an unexpected (and surprisingly essential way) it’s given her the power to prove to the doubters, the nonbelievers, the skeptics and cynics and those who forget to presume competence, that a child who in unique and complicated and doesn’t always look like she’s learning may actually be quite clever, and capable of learning whatever you throw her way.

If you are new here and interested in learning more about AAC, please head over to this page, which is a great jumping off point.

Friday, May 16, 2014

The Limitations of Sign Language for Children With Speech Delays

Once upon a time, when Maya was little (a few months old) we started signing with her. Not because she had special needs, but because many people use sign language with little kids, who are often able to produce expressive signs before they can produce the same words verbally. We waited months for her to start signing back, which she eventually did---much to our delight! She learned many signs in the months (all the way up until she was 2.5, I think) that followed, we used baby sign language dvds, I even made a "Maya Sign Language" video dictionary that I sent to her preschool teachers so that they would understand her. Signing was great, because without it we would have had no way for her to communicate with us and her teachers. 

I look at that paragraph now and all of the shortcomings of sign language jump out at me (it took months for her expressive signs to come, she only learned dozens-not hundreds-of signs, despite having expressive signs I still had to make a translation video for her school staff to understand her). And before I start discussing the limitations of sign language for kids with speech delays, I need to be clear about a few things. Here are my disclaimers: First, ASL (American Sign Language) is an absolutely beautiful, complete language. For families who are a part of the Deaf community, ASL makes complete sense. This article is completely irrelevant to that experience. Second, I think it is valid for children to learn sign language, and I think sign language can be a great component of communication. I'll get to where it fits in below. 

But children who are slow to develop language, who have "speech delays", who have "complex communication needs", who are "nonverbal", who have apraxia/dyspraxia/oral motor planning difficulties, who have CP or autism or genetic syndromes, children who will NOT be attending a school for the deaf or supported in the Deaf community----these children should not rely on sign language as an alternative method of communication. 

Here's why:

1. Most people don't understand sign language. Children need to be able to speak to EVERYONE they meet (well, if they want to). Grandparents, cousins, the guy who works at the deli that you go to on Thursdays, their bus driver, the secretary at their school, the kid that he just met at the playground who has Spider-Man on his shirt, the nurse in the doctor's office, the doctor, the grandparents of a friend at a birthday party, the lady in front of you in the Starbucks line who is asking about whether she likes the movie Frozen, the teacher, the substitute teacher, the gym teacher. These people do not all understand sign language. Which leads to . . . 

2. A child should not need to rely on a translator. (Even if that translator is you, and you are awesome.) Here's why: it forces them into the backseat of their own conversations. Imagine if you went out with your spouse (or best friend) and every time someone spoke to you, you signed and your partner had to speak back for you. You're one-step-removed. Kids who are struggling with language issues, who are learning the ebb and flow of conversation, need to be empowered with a way to speak up, to step in to conversation, to join. (Passivity is a big personality trait that develops among kids who have speech delays---they're used to other people speaking for them. As a side note, the other big trait is anger/tantrums because they have no other ways to get their points across, and behavior becomes their method of communicating.) On top of that, our kids (who often have multiple challenges) are already shadowed by their parents enough. I didn't want to have to be all up in every conversation that Maya ever has.

3. Fine motor issues lead to garbled signs. Maya does not have the dexterity to move her fingers in ways that would allow for the clean, clear formation of the vast majority of signs (hence the "Maya Sign Language" translation video---even people who speak fluent ASL wouldn't understand her signs). Teaching sign language to nonverbal children with fine motor issues as their primary means of communication is basically spending hours helping them learn a language that effectively no one (besides you and your child) speaks. It doesn't make sense.

4. I think that AAC is faster to learn than sign. (Please note the "I think", as this one is totally anecdotal.) I learned ASL alongside of Maya, and then I learned to be an AAC user alongside of Maya. AAC is, in our experience, much faster. I wondered if this was because Maya's motor challenges make it difficult for her to execute new movements, but then I realized that I'm able to learn words via AAC more quickly as well. Her app can hold over 13,000 words. I don't think I would be able to remember that many signs. 

Will (19 months) is learning to speak. He is also learning sign language. He is also learning AAC. This type of multimodal whole-language approach is, I believe, where ASL fits appropriately for children who have complex communication needs. It's great to have a child who has multiple ways of communicating, and there's no downside to teaching ASL in conjunction with using a more-universally-understood AAC device/app.  But, in my mind, the AAC is not optional. 

See for yourself:

The criticism: Here are the most common complaints that I hear from people when I share my thoughts on the limitations of signing:

1. Signing is better because kids always have their hands with them, you don't need a cumbersome binder of cards or an iPad. And what about places like the bathtub where a kid can't have an iPad anyway? Maya's iPad mini isn't cumbersome, and there are several option now (like a waterproof electronics camping bag) that would make it fully submersible in a bathtub. But that's totally beside the point, because signing is great for you to use with your kid----as long as you're also providing them with a way to communicate with the non-signing population.

2. My child loves sign language and has learned over 200 signs! That's so great! But most 3 year olds already speak over 200 words, and by age 4 we're well into the thousands. That's a lot more than 200. Keep signing but make sure there is another way for her to express the thousands of words that she likely understands but does not know how to sign.

3. It's his choice to use sign language. I'm certainly not going to argue with the choice of a child who has communication challenges. Obviously, how he communicates will be his choice. But (in my humble opinion) he needs consistent exposure to multiple modes of communication. My kid is going through a cartoon phase and has gained buttons in her device for nearly 100 characters in the past few weeks----it's all that she talks about, to anyone who listens. She would never be able to learn and imitate this many signs this quickly, and no one that she spoke to would know the obscure signs for "Jiminy Cricket" or "Handy Manny" or whatever. I think that multiple modes should be taught and encouraged, and the child can use a combination of them to get their points across to a diverse field of communication partners.

Our kids with complex communication needs need the same early access to AAC that many of them have to sign language. Sign language is a great component of multimodal communication, but without an AAC option that can be universally understood we are limiting their ability to independently interact with peers, family, friends, and professionals.

Wednesday, May 7, 2014

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.

Thursday, May 1, 2014

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)


Friday, April 25, 2014

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.

Thursday, April 10, 2014

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.



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:


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.


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!

Sunday, March 30, 2014

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.

Sunday, February 23, 2014

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.)

Monday, February 10, 2014

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: