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Friday Five: Shaking It Up 

Sometimes I find our language modeling is getting stale. The first sign is usually that we begin noticing repetitive conversations and phrases. We aren’t branching out, and so Diva is not branching out. We might use the device a little less, and rely more on guesswork and gestures. Here are five things we do to help keep the routine from getting stale — and to keep expanding Diva’s language. 

  1. Add more words. And make them interesting ones! Add more basic core words, certainly, but also add fun words like delicious and aggravated and mime. Part of learning to talk is falling in love with the language. Give your child things that s/he can fall in love with. And if your system has no room for playful words, it might be time to explore new systems. 
  2. Add special interests. A lot of moms I know talk about how they add new TV characters when their child starts losing interest in their talker. This makes so much sense to me because our kids need to be able to talk about the things THEY love. If they can’t, they won’t use it. Add TV characters and train line stops and the titles to favorite songs. Give them a way to tell you about what they love. We just added the characters from Yo Gabba Gabba, and you can bet that was the first thing Diva wanted to talk about in the morning. 
  3. Double-check: are you ensuring access to the system all the time? Systems are so easy to get left behind. This is why we use a Gab & Go Harness. When we start seeing a drop in language use, we often find that we weren’t doing our best to re-attach her harness after a bath, or first thing in the morning. The talker HAS to be there to take advantage of opportunities as they arise. If your child cannot have constant access or easily initiate their full system, maybe consider teaching use of an “I have something to say!” wrist band (raise arm in air), Big Mack, or other way to provide a link between child and system. And make that always available. 
  4. Try a new activity. Be creative and try a new play activity that might spark ideas for words. New activities inspire us to try new words, but they also offer us a chance to let go of the “I know her like a mom does” thing. We make a lot of assumptions about what our kids think and feel. New activities force us to drop that and see what they actually SAY about this. And there are so many different things we can explore. In a FB community, a mom mentioned having her child direct her to make different things with Play-Doh. Dana wrote a blog about TV character puppets. We have used new music videos to spark conversation, since Diva is hugely into music. I think it’s really, really important for the activity to be chosen because it’s FUN, not because of its therapeutic value. FUN is what gets kids talking. 
  5. Create a new family ritual. Find a way to add a 2-3 minute family ritual to your day that relies on communication. Don’t make it hard or a burden. And don’t pick a time of day that’s already hectic. Morning rituals would be a disaster for us. Evenings work better. Dinner. Before bed. After bath. Rituals can be prayers, questions about days, telling stories, sharing a cuddle on the couch, working together on a puzzle . It’s what works for YOUR family and what causes you to model. One of our favorites is to have everyone share a highlight or funny part of their day at the beginning of dinner. It doesn’t happen every single night, but it happens often. We model things that we say, and then we give Diva her own turn. Seeing her participate on her own has been awesome. No more guessing or relying on teacher’s notes. She says herself – “markers markers markers” and “favorite show want get”. That’s worth all the time and effort in the world. 
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How We Do It: Her Words, Not Ours

Two weeks ago, we wrote about how we familiarize ourselves with Diva’s talker and get comfortable with the concept of modeling. This week, I’m focusing on how we started modeling language — what we modeled, when we modeled. A lot of families and classrooms start with a few focus core words, like the year of core words. They choose 9-12 words to model for a month, rotating throughout the year. This can also be done by choosing 2-4 words per week. More, eat, play, want, those all tend to be really good starting words. This approach works for a lot of families. I’ve even recommended this approach for families. It builds familiarity with the system. It offers lots of options. It prevents you from getting stuck on the same 5 words and never moving forward. It’s a good approach.

It doesn’t work for us.

I’ll never forget a Linda Burkhart workshop where I asked about this, and whether we should choose focus words. She responded by reminding me that part of communication autonomy means that Diva gets to decide her first words. She gets to decide which words are important to her. Toddlers aren’t limited to 12-15 words we think are most important. Some of them choose really strange words to fall into their first 10 words, based off how they sound and what reaction they create. Diva needs the same opportunity. She needs all the words, and she needs to decide what’s powerful.

Still, that can be overwhelming. All the words? But we’re brand new! We’ve never done this before! Where do I start? Start by knowing that you will make so many mistakes in this process. Communication is messy. You will miss opportunities. You will accidentally speak over your child and move their hand from the board. You will guess wrong. You will forget the talker on the table when you’re in the bedroom. You will forget to charge it. And none of that is going to wreck your child’s communication for life. Start by doing the best you can right now, and knowing that you will keep growing.

When did we model? We chose one or two routines to observe and focus on modeling language. We started with snacks and meals, because the positioning is really good, access is easy, and both parents are there. We made sure she had her device all day long, but we took extra time to think about and pull in communication to these meals. After a few days, we started doing more during play time with her. Then, we focused on modeling whenever we were transitioning to a new place. This isn’t perfect, but we found that as we gained fluency in these routines, we started modeling at other times of the day very naturally. Without planning, without thinking, we started modeling her system all day long. And we started modeling a lot more things than a word of the week. Our lives are busy with attention split in 20 different ways at any given time, and this is what worked for us.

What did we model? We watched HER. We wanted to guess what words would matter to HER. Not our words. Not what we think matters. But what might matter to her. What objects is she looking towards? Reaching for? What are the other people in her life touching, playing with, watching right now? Does she need a way to request or comment on those objects? What is Diva’s body telling us? Is she smiling? Frowning? Does she appear frustrated, mad, or sad? Is she spitting that food out or munching on it happily? Does she ask for this thing again and again, might it be a favorite? What choices can we offer her — not choices of requests, but choices of things she may want to say? Linda referred to this as linguistic mapping — mapping language on to what a child’s body language and expressions may be telling us. Linguistic mapping is hands-down the most powerful thing that we have done for Diva. And her first words with her talker weren’t nouns, nor were they more, want, eat, play. They were “next” like “What’s next?” and “next song”. They were “mad” and “frustrated” and words to express her disapproval of what was happening around her. They were “go away” (first two word phrase).

We do model what we are saying and doing. The slowing down of our phrases and highlighting key words has helped with understanding and providing a rich vocabulary. It also automatically gives us content to model, since we tend to speak too much anyways. But it’s never been our focus. Our focus is always about what she might want to say. If we are modeling “STOP”, 97% of the times it is modeled are because she may want the swing to stop, may want us to stop, may want to leave the activity. Her talker isn’t a way for us to dictate what she must say and do in her life. It is her voice.  Hers. It is her way to control her world, express her feelings, and be the independent and sassy tween that she is.

To close, I’ll leave you with some examples of things that we may model during a short snack, hoping to showcase the way that we make this about her words (not ours) —

  • Do you want COOKIES or PUDDING?
  • I wonder if COOKIES are your FAVORITE.
  • That looks DELICIOUS.
  • I think you might be HAPPY or EXCITED.
  • You want MORE.
  • Your brother is LOUD. You DON’T LIKE.
  • This is MESSY and STICKY.
  • Do you NEED a NAPKIN?
  • Maybe it tastes SWEET.
  • I wonder if you want to EAT or DRINK right now.
  • You are FINISHED.
  • You look like you WANT to GO.
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Mission: Independence!

I’ve written about Diva’s AAC system before, along with where we were when we started. My sweet girl has worked so hard to express herself, and come so far. She tells us when she’s frustrated, mad, tired, and happy. She asks for her favorite shows, for milkshakes (“dessert juice”), and Christmas songs. She bosses all of us around, just like any almost-tween. It is sort of hard to believe that she only started accessing a speech-generating device less than a year ago.

Since then, we’ve learned about, explored, and assessed some other systems — high-tech PODD 15+, Unity 45 One-Hit on an Accent 800, LAMP on an Accent 800, and even Compass. We’ve almost succumbed to the lure of the internet and the “this app is the best thing EVER!”, as well as the guilt of whether we are doing enough. The thing is that Diva has multiple disabilities. She doesn’t have autism, or a genetic syndrome, or apraxia. She has both visual impairments and physical disabilities. In fact, she used to be considered legally blind, though her vision has improved substantially over the past six months. When we talk about not being able to access small buttons, she both cannot see the buttons and cannot manipulate her hands to isolate each button. With an impending school move, we spent the past week making some “final” (ha!) changes to her current system — always trying to find that balance between independence and ALL-THE-WORDS! I thought I’d describe some of her system so that you can see how we worked through this, in hopes that it helps other kids who are struggling with being able to be autonomous communicators.

Home page of Diva's talker.

What she’s using: Proloquo2Go on an iPad Mini, attached to her via the Gab N Go Harness. We chose the smaller screen of a mini for its portability. We wanted to be sure Diva could carry her own talker everywhere she goes. P2G is probably the most customizable system that I’ve had my hands on, which is why it keeps working for her. I think the danger of P2G is that people end up with a series of words or pages, instead of a language system. We’ve worked really, really hard to make sure that Diva has a language system.

Access: Diva uses direct access via hand. We tried step-scanning and automatic scanning, but she has literally thrown the devices at us each time we have done this. She has no desire for any of that. She wants to do it herself. She is able to isolate her pointer for short amounts of time or with light adult support, but adult support is interpreted by presume-incompetence people as proof these aren’t her words. They are her words. They are 100% her words. So a huge reason we made changes was to increase her ability to independently access the words, no adult support, and speak her mind.

Visual design: Diva has been using high contrast icons since January very successfully. The high contrast PCS decrease visual clutter and extra details, as well as use color to help differentiate pictures that would often look very similar (e.g., all the faces with emotions). With CVI, the more she sees pictures, the more she can visually understand them. We recently noticed that she had switched from relying on auditory feedback (push button, hear it speak, decide if that’s what she wants) to visual scanning the images. We switched the button backgrounds to black. We deleted one row, moving her from a 5×5 array to a 6×4 array. On P2G, this means that her buttons became squares and the images became bigger. We also increased the space between buttons to decrease mishits (hitting the button to the side or above accidentally). At first, we had everything in yellow borders. After talking with a dear friend, we realized that adding the color borders would help communication partners to identify words more quickly when modeling. I already think it’s helping Diva as well.

Language organization: Diva’s language system has been designed from scratch, with a focus on core words. The customizable features of P2G means that we have been able to keep features from different apps that work for her. The first page consists of all folders, each of which open to a second page of 24 vocabulary buttons. We don’t repeat any words, one path per word. Our original hope was for her words to be within 2 hits, such as with apps like Speak for Yourself. Except we presumed competence, she kept growing, and we realized that we need something that will be able to grow and grow and grow. So we incorporated a couple of other features we love — the categories page and list features from PODD. Both of these features allow us to collect and add fringe words in easily accessible ways, without substantially increasing the amount of hits. The absolute most number of hits to access any word in her system is 4, with most words being between 2 and 3. I am not someone who thinks “number of hits” is the be-all, end-all feature of AAC. I do think that the more we can keep visual scanning needs down, the more independent Diva will be. It’s taken a lot of time and feedback to come to these decisions, but we’e tried to think through everything — where words will go, what color, where “clear message” and “turn the page” are located (same place on every single page). We have a “cheat sheet” that shows where and how words are placed. Nothing is added without thinking through the whole system. Nothing is added because it will make things easier right now without thinking about what Diva needs long-term.

The second page (under "look") of her talker. Notice "TV shows" in the far right column, which leads to a  list. This will be a pop-up when P2G 4.0 comes out.

The second page (under “look”) of her talker. Notice “TV shows” in the far right column, which leads to a list. This will be a pop-up when P2G 4.0 comes out.

This is Diva's categories page with her current unmasked categories. The left column shows one of my favorite things in PODD -- a way for kids to quickly help us know what they are telling or asking even if they are not yet using tenses.

This is Diva’s categories page with her current unmasked categories. The left column shows one of my favorite things in PODD — a way for kids to quickly help us know what they are telling or asking even if they are not yet using tenses.

Vocabulary selection: We used the UNC Center for Literacy & Disability Studies’ forty word core word list to decide the core words that needed to be most easily accessed. We then used a bunch of high frequency core word lists to select vocabulary. Her personal core consists of family names, television shows, most frequently used toys, and therapists/teachers in her life. We collect lists of fringe words and add them in the evenings. The vast majority of her current vocabulary is unmasked, which means they are visible to her. She’s learned so many new words through modeling and babbling — hiding the words seems to be a bad decision. If we weren’t sure about this, I hid some words and walked in to her pressing blank spaces repeatedly, looking for where her words had gone. The exception to this is that we do not have all categories unmasked yet, since these are new.

Making these changes meant that her absolute max vocabulary grew from 400-800 maximum slots to 1200 – 1500 maximum slots. I realize that 1500 is still so much less than something like Speak for Yourself or P2G with a much larger array or more categories. But she can access these words! All by herself! She can tell me from across the room that  she’s thirsty and wants juice. She can tell me to watch her! It’s not helpful to have 3,000 words if you cannot get to them — she can get to her words. It’s not helpful to have an awesome pragmatic system like PODD if half the people in your life aren’t using it. Maybe by the time that we get to hitting 2000 words, Diva will have the visual & motor skills to access larger arrays. Maybe completely different technology will exist. I don’t know. I do know that I cannot let mama-guilt and mama-fear take me over. I’ve got too much real work to do.

This is the first in a series on AAC that I hope to do this week, covering her design, the way we use it, the way we support others to use it, and so on. If you have questions, leave them in the comments!

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How we talk about growth

I read lots of comments online about how children are doing making progress or doing better because they no longer need some form of assistive technology that they used to use — a wheelchair, a gait trainer, a speech-generating device, a picture schedule, and so on. And I wonder — isn’t there a different way to talk about this? Do we understand what our language is saying?

At first glance, it doesn’t seem harmful. It seems pretty factual: my child used to do this and now they do this. Listen again. It’s in the implications that we bring to our conversation. We celebrate every step closer to “normal”, that what “typical people do” becomes our yardstick for measurement. What are we saying about the children who still use AAC? Who still need picture schedules, lists, gait trainers, and AFOs? Is there some sliding scale where the less technology needed is better?

I’ve been thinking a lot about the many ways that we reinforce the culture of ABILITY! We prize neurotypical friends over friends with disabilities. We value pretending to play house over parking our cars in (beautiful) patterns and lines. We value breadth of knowledge over depth, and block our kids from special interests and passions. We demand that they conform to the way we teach, the way we live, the way we interact. We mourn their inability to engage on the playground in the ways that we did when we were growing up. We use the word progress, which almost always infers that what we left behind is less-than. Technology progress. Human rights progress. Always moving forward, always looking down on what we left. Do we want to look down on our children? Who they were, who they are, and their unique journey?

I don’t want to measure my daughter against the mainstream. Can’t we value friendship and joy and presence, all on their own, regardless of external measurements? Can’t we ask this child — or use their behaviors to understand — about their happiness, their dreams, their vision? Could they be alone on the playground and happy? Don’t some of us recharge best when we have time by ourselves? Could they learn creativity and problem-solving and engagement in those striking grids of trains and animals? Does it have to be the way we’ve always done things? And aren’t there many ways to achieve those outcomes, some involving technology and some not?

We are playing with different ways of talking. We haven’t perfected it. I am constantly becoming more aware of the ways my language insidiously supports everything I stand against. So I wonder — who is that needs to make progress? Is it our kids? Do they need to leave themselves behind? Or is it us?

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The Things We’ve Tried.

Sign Language

  • We started with “more” and then added “eat” and “again”. Diva learned “more” in a a week or so.
  • What worked: It gave her a way to say “I want something” quickly and could be used across all environments and activities.
  • What didn’t work: Diva has fine motor difficulties and her signs were approximations. Only immediate family and her teacher understood her signs. Because she only had 3 words, she would use them for EVERYTHING. It was clear that she did not have enough words to express herself.
  • What we learned: She needed a way to communicate that everyone would understand. She needed more words. She needed something that would not rely on super dexterity. We just didn’t know what, since vision is always a question mark.

Big Mack Switch

  • At the same time as introducing a few signs, we set-up a Big Mack switch near the TV to say “I want to watch a show!” because that was a huge source of frustration for her.
  • What worked: Giving her a way to communicate and giving her continuous access. Even though sometimes she would hit the button repeatedly, we never took the button away from her. Her frustration in the form of screaming and yelling dropped. She had a high amount of interest in the SOUND.
  • What didn’t work: It was only doing one thing. We could have re-programmed it all day, but that didn’t feel meaningful or different from sign language. She wouldn’t have HER voice. She would be saying what we guessed she wanted to say.
  • What we learned: We needed to know more about how to support her to communicate with her vision impairment. The “prerequisite” or “basic” stuff wasn’t decreasing her frustration enough, because she had more to say. But we didn’t know what we could do, since she could not see to choose from pictures.

PODD Book

  • And then we met her current private SLP, who is amazing and awesome and all about presuming competence. She introduced us to the concept of a PODD book, which is a system for communication that can be adapted to fit pretty much any child with any type/level of need.
  • What worked: Someone believing that she had more to say than just, “Juice!” It was organized in a really user-friendly way and was super accessible. She could use partner-assisted scanning and play to her auditory strengths. She didn’t have to have any motor control. She didn’t have to have any “prerequisite” skills either. Even if a child has very little conventional communication skills, they can begin to learn to use a PODD book as the people around them co-construct messages and make meaning with their actions.
  • What didn’t work: School was clueless. We sent videos. We sent worksheets. We sent handouts. School was clueless about how to implement it, and also did not seem to believe that pragmatic functions other than requesting should even be on the menu, so to speak. Diva also got frustrated by scanning at times.
  • What we learned: Our daughter had a lot to say, and she needed people who believed in her. We learned so much about the functions of language, the importance of robust communication systems, of having options, of how to model language, of how to ascribe meaning, of how to support our daughter to be a better communicator. Linda Burkhart’s stuff is still my go-to for thinking about goals and true communication, communication that is more than just “I want cookie.”

PODD Book on iPad

  • We didn’t want Diva’s PODD book to get destroyed when on a water vacation, so we put it on the iPad using Proloquo2Go just so that we would have something. We were planning on using partner-assisted scanning, but she started touching and banging on the screen enthusiastically so we let her have lots of time to play and explore, during which we talked with her.
  • What worked: She LOVED, I mean, LOVED having a “voice”. She loved being able to push the buttons herself. She laughed and danced and laughed again. She was so joyful. She wouldn’t let other people touch it, pulled it back from them, and claimed it as her own. Electronic made it really easy to adapt and change things as we needed.
  • What didn’t work: Not enough buttons! We expanded her PODD 2x during this process. Every time we raised the bar, she followed. We also had concerns about her using the iPad as her device, because she was used to watching her videos, listening to stories, talking about the alphabet, and playing games.
  • What we learned: Mostly, keep raising the bar. Stop letting other people dictate her limitations.

Tango

  • We really wanted to try a device that had been designed for children who had significant disabilities and used a lot of social language. The Tango has a raised grid, buttons similar to the iPad (rather than a touch screen), and auditory scanning features.
  • What worked: There were new options for talking available for her.
  • What didn’t work: Everything else. The pictures were too small. There was little contrast. The editing and ability to design phrases and words was pretty impossible. And Diva HATED the auditory scanning. I mean, every time I turned on the auditory scanning, she threw the Tango across the room. Hard.
  • What we learned: Diva wants to direct select. She wants to speak for herself. And she needs all the words, as one of my favorite blog moms says. Also, we learned that high-tech dynamic display devices help bring you into community. This is the first time that other people started talking to Diva, including her brother. Her brother LOVES that she can talk to him now (even though sometimes now he wishes she would stop, I’m sure! As brothers and sisters do).

Speak for Yourself

  • I read about Speak for Yourself via online searches, and fell in love with the idea of planning an AAC app so that the words NEVER MOVE. The blog is phenomenal and teaches a lot about AAC in general. We used the trial version successfully, so we bought the app to use with her.
  • What worked: All the words! There were all the words! And high contrast! And all the words! And they never moved! And only 2 hits! She was able to hit “want” in the trial app pretty quickly.
  • What didn’t work: It was really, really hard for Diva to access the buttons. We felt like, yes, she has all the words, but we can’t open very many because they would be too close together and too small. She started banging on the iPad a lot and showing more frustration than she had in a while. It was a really hard decision to go in a different direction, because we love this app so incredibly much. We also worried about the voices, which weren’t always clear.
  • What we learned: Even the best of the best apps or devices (and I think SFU is probably close to the top, if not the top) may not work for everyone. Sadly. But we learned so much about AAC design, core words, modeling language, believing in the importance of a large vocabulary from that app, the blog, and the amazing designer.

Proloquo2Go (Self-designed)

  • And then I decided to take everything that we had learned about what works and doesn’t work for Diva and design our own, using Proloquo2Go. P2G is powerful for this because they have a HUGE symbol vocabulary and you can start from a completely blank template.
  • What worked: I customized everything. I customized the size of the buttons, the spacing between the buttons, and the colors of the buttons. I chose a 5×5 array. I kept the top left button clear because it would be easier for her to hit the home key. I used core words on the main page. I kept it to two hits, like Speak for Yourself.
  • What didn’t work: It’s working really well, except that space is still a premium. This design can hold, at most, 600 words. She needs more words. There are words like counting words and shape words and things that I would love to add for her but always feel nervous since space is a premium.
  • What we learned: Raise the bar, guys. Raise the bar. Diva started creating her own 2 word phrases to express things. And she speaks all the time about things I could never have guessed about. She speaks about way more than requesting. She tells me how she feels. She talks about her day. It’s changed all of our lives.

What did we veto?

  • PECS. PECS is a great tool, but it’s not a communication system. It’s requesting. It’s formulaic. It is limiting. Diva’s first conversations with her iPad were about her feelings — something that PECS would never have accounted for. Plus, Diva can’t see. School kept insisting on working on picture identification and PECS (or picture boards, I’m not really sure… People seem to forget that PECS and picture boards are not the same). And we kept saying, best practices in AAC say the “prerequisite skill” thing is out-of-date. Plus, she can’t see. Me repeating that to Diva’s many doctors and therapists is a common theme that will emerge in this blog, I think!
  • NovaChat/Touch Chat HD. We really don’t want any kind of app that relies on any sort of predictive framework. It could be something formulaic like NovaChat where there are boards sort of pre-designed. I would rather Diva only have single words for the next 20 years, but they be HER single words. Plus, she’s putting words together herself already and I love the way she does it. It teaches us about her thinking and her way of viewing the world far more than making “good sentences” would. She’ll get to the good sentences — but communication is more important than syntax, to us.

What’s next for Diva?

  • We are working on a 9×5 design of her board, which would open up her vocabulary to 1,000 words and maybe more. We are considering whether to stick 100% to the 2-hit rule, or whether we should consider 3-hits for a very few amount of things (e.g., months, pop music artists). We are still mulling over whether we can just move towards modeling Speak for Yourself now that she has some pointing ability (that gets stronger every day). I don’t want her to keep “outgrowing” her devices. At the same time, I don’t want her frustration level to be so high that she stops communicating. I’m really conflicted. Really, really. The major drawback is that I can almost certainly guarantee that some therapists/staff would not believe in or follow through with the use of SFU.
  • We are starting to use GoTalk Now for her to help us make experience books with photographs so that she can talk to people about her weekend, her trips, and special things. It would fill a conversational gap that may exist between her same-age friends and where she is with her device.

Accessories

  • Harness. Diva wears a Gab-N-Go harness. I learned about this online and I LOVE IT. I love, love, love it. It leaves her hands free to use her gait trainer, to scoot, to feed herself, to play ball — and yet her device is still RIGHT THERE on her. No one can take it away from her (my biggest fear). It’s hers, forever, always. She loves it too. I love it. It’s just amazing.
  • Keyguards. We haven’t made up our mind yet on key guards. We’ve tried one designed for her current P2G design and one for SFU. Diva gets super frustrated and tries to rip it off. After it won’t come off, she starts throwing her iPad and refusing to speak. We don’t know what the deal is. I don’t know if it’s because the fine motor is harder, if it interferes with her vision, or if it interferes with her tactile searching (which helps her remember where what she wants to say is located). Either way, we temporarily removed it and have been thinking about ways to alter it and see if that helps or not.
  • Stylus. We’ve considered getting Diva a stylus, because she sometimes uses her spoon or fork to try to touch the button. We’ve also considered adding something that she could hold because she likes to hold our index finger or pinkies to help her hold pointer. We haven’t yet added anything, but I’m sure we will do one of these two things in the coming weeks.
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Where We Were

AAC and presuming competence works for everyone. Everyone. My daughter right now has about 100-150 words open on her device. She consistently uses the following words independently: want, go, car, show, happy, mad, bored, feel, wet, more, eat, drink, potty, music, next, like, don’t like, cookie, help, please, play, yes, no, and ball. She has been using her device in this design for about 6 weeks.

Because of this, I know that some people will think that she is “higher” (don’t even get me started on how much I hate the terms high and low and everything in between) than their kids, and that their child is not capable of these things. I know that some of my suggestions and my story will be discounted. People will say that their child is different, or that their child has this other disability, or that their child is… And it’s true that out children are different. It’s absolutely true that they will need different things and will express themselves differently.

It’s also true that AAC can work for everyone.

When my daughter was young, before I even knew her, she was not doing much at all in her classes. She is diagnosed with cerebral palsy, apraxia, low vision (legally blind), post-traumatic stress disorder, and moderate intellectual disability. She was not yet able to sit independently. She had a few vocalizations, and the word “ball” by the time she was 5. She was using very little of this communication to interact with anyone. From everyone that I know, she spent most of her day crying or screaming. She was not playing, or laughing, or singing with the class. She was difficult to soothe or redirect. She spent a lot of time sitting in her room by herself, sitting in a wheelchair being hand-over-hand prompted for everything, and being disengaged from the world around her. She did not have the ability to cross the midline, to make a pointer finger, to isolate one button on a screen, or to even hit a screen successfully. The assumption was that she would be incapable of doing much at all, I am sure. People probably assumed that “there’s not much going on up there” or that she had little skills. People probably assumed a lot of things that would turn out to be very incorrect.

Fast forward to now, the two years that she has been with us, and she has outgrown each and every communication system that we have set-up for her within months. She can hit a button on an iPad screen easily with the proper back-lighting and color design. She is beginning to prefer her left hand, and she can hold her pointer finger on her own for 3-5 seconds. She is engaged in reading electronic non-fiction books online with me. I’m teaching her how to hit the button to turn the page. She likes to say some of the letter sounds, or talk about words that start with “bah”. (B is definitely one of her favorites). She can verbally count to 20 on her own.

I share this because we are going to talk about our journey to where we are with her AAC system, and to where she’s going. I need you to know that you can get there too, that this is an attainable success story. This is not some Lifetime movie drama that we cry about and go back to our daily routines. This is real life. Your results won’t be the same. You aren’t the same. Your child isn’t the same. Our lives aren’t the same. Your results will be remarkable, though. I can guarantee that introducing and using AAC systems will change your life. I guarantee it will grant you and your child surprises that you could never have imagined. I guarantee you it will bust down doors and break glass ceilings, whether it’s through the accumulation of one word or paragraphs of words. I guarantee you it will be worth it.

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What is AAC?

I write about AAC a lot, and my daughter’s “talker”. I figure I should probably explain what AAC is (and is not), before I get too far into this whole month of AAC awareness.

  • AAC stands for augmentative and alternative communication. That means that it supplements or replaces speech as communication.
  • AAC can be the use of your body to support communication. All of us do this every day — facial expressions, gestures, and so on…
  • AAC can be sign language.
  • AAC can be “low-tech”. This is often pictures or picture boards, but it can be objects or tactile cards or alphabet boards or anything like that.
  • AAC can be “high-tech”. These are the speech devices, the computers, the iPads, and so on.
  • People can access AAC devices and systems in all sorts of ways — touching a button with their pointer, looking at a screen or object, hitting a switch with their foot, using a pointer attached to their head… It’s pretty amazing.
  • AAC can serve all the same functions as speech — greeting people, taking turns, talking about your day, asking for things, sharing your feelings, and so on.
  • AAC does not delay speech.
  • AAC is not inferior to speech.
  • Some people use AAC systems and speech. Most people use a communication system that relies on several different ways of sharing what they want to say.
  • AAC can be used when you are 12 months old or 100 years old.
  • AAC is a rapidly expanding field, and few therapists have the ability to stay up on it all.
  • AAC is used by people who are deaf, who are apraxic, who have disabilities, who have medical diseases — anyone who is not able to fully express themselves via speech.
  • AAC is life-changing.