I thought I should finally do this

When you’re writing blog posts as you go to sleep, you should probably get a blog…

” why didn’t we think of that? That’s exactly the right next step ” – a medical team after I spent like 10 minutes thinking about communication options for my cousin

Hi! I’m Lily. I’m autistic. I’m a part time AAC user. I’m gay. I’m engaged! I have invisible physical disabilities. And I’m a professional. I did some undergrad work in speech pathology and might still pursue that — but after a few months as an educational assistant I’m daydreaming about how much I would love my own classroom.

I’m pretty special interested in creating communication solutions and curriculum right now. It’s so worrying to me hanging out in education circles and seeing the way curriculum is right now. The team I mentioned at the beginning is working with a kid with CP and had never heard of partner-assisted scanning. She’s 7! She loves expressing her emotions! She hates grabbing things and has trouble pointing! They’ve been essentially doing PECS with requesting for 4 years and wondering why she doesn’t seem interested!

I see SLPs choosing Proloquo2Go for every kid who needs AAC because that’s the only app they ever saw. I see SLPs saying they loved their AAC class in grad school because all the device vendors came and showed off. (Not that it’s not good that they got exposure to different options, but they never got exposure to material about modeling or literacy or core language and they thought it was a good class).

Past AAC, I spend way too much time on pinterest, and I see a million social stories about quiet hands, and curriculum where you look at a cartoon of a person and practice whether to call them “he” or “she” based on appearance. Oof. I want values-aligned curriculum to be available to everyone, not just kids you think are “smart” enough to understand it.

I had to leave my work as an EA because my joints started dislocating at the drop of a hat. I’m bored now (I work part time at the most relaxed DD foster home to ever exist). Suddenly I’m spending all my free time making communication boards and books because I love it, and I’m going to sleep drafting posts about my experiences, and I’m drawing pictures of my dream classroom. It seems like a time to share that.

my dream for when a child first gets AAC

As we approach the end of AAC Awareness Month, I think about what I’m sad I didn’t see this month, and what I’m sad about all year. There are opportunities I want kids to have, ideas that I want to be commonplace. I feel powerless to spread them. I know I don’t do well working in a classroom, and some of my ideas are so radically different from the way things are done now that I can’t imagine myself convincing anyone higher up than me.

But I have a lovely dream in my head. It looks like this.

The child: children get exposed to AAC as soon as there’s a glimmer of possibility they might need it. Not when we first start seeing a speech delay–even sooner. ALL kids with developmental disabilities. ALL kids who qualify for early intervention. The way we expose AAC is built into the everyday. No expectations. No data collection on the kid’s actions. Just using AAC, building it into the world. 

The evaluation: Children see many types of AAC systems: dedicated devices and ipads, icons and pictures and text, low tech and high tech, phrase based and word based. They see all types of system organization, from pragmatic (PODD), to semantic (LAMP, Speak for Yourself), to syntactic (Proloquo2Go, TouchChat), to phrase based (parts of Snap Core). They try different access methods–even if there seems to be no access challenge. They get to take favorites home. Their sensory needs and personalities are built into the evaluation, not an afterthought or a last step.

The system: All the words are always available. Masking means dimming icons or having both a simplified pageset and a full one at all times, not ever removing the chance to use more words. It follows the child, because it’s easy to carry, or all over the house, or attached to parents and caregivers. 

The teaching: Operative skills are ‘taught’, like volume adjustment and charging. Language is immersive, and the child doesn’t get “taught” so much as “submerged”. /Never/ “use your words”, “show me on your talker”. Never testing.

The speech therapy: More than half is parent and team coaching. If someone walked in randomly, no one could say who was the SLP and who was a different team member, because everyone honored the communication modalities of the child. Pull-out services are an exception–speech therapy happens in authentic situations in the home, community, and classroom. The speech room is there for kids who need an oasis of calm and quiet in their day, or who need an opportunity to meet with other AAC users. It’s not there to make things easier for teachers or because all the material are kept there.

The school: All preschools and schools are full of AAC. High tech devices are there for even typical kids to use when they’re distressed, when they want to look up the spelling of a word, when they want to type a word and hear it played out loud to check their spelling or see how their sentence sounds. Core boards are used as the default tool to teach sight words. The AAC user’s system is solely theirs, because there’s always an extra to model on. Teachers have professional development time dedicated before the school year starts to learn things that will help their students–full days to learn a new AAC system, to learn new teaching tools, to form a 1:1 connection with a disabled student coming into their classroom. This doesn’t take away from their planning time, because they have support for classroom organization and decoration and materials.

The family: Feels comfortable starting slow and taking time to learn the system because they started early enough to not be catching up. When the family confesses to not modeling enough or forgetting the device places, the support from the SLP isn’t just “it’s ok, don’t be too hard on yourself”, it’s “here are some videos modelling alongside your kids’ favorite books and songs” “I’m going to connect you with DD services who has a list of support workers who know your child’s system and will model” “This group for parents of AAC users will bring you meals and babysit and clean so that you don’t feel so frantic that you don’t have time or energy to do good by your kid”.

But the biggest part of my dream? Connection between adult AAC users and kids. The kids deserve to see someone like them, who doesn’t model one or two words per sentence, but speaks with it. SLPs who don’t know adult AAC users shouldn’t be providing AAC. Families who can’t envision their child’s future are being failed. And adult AAC users shouldn’t feel like me, banging on the door to be let in, feeling ignored by the people claiming to amplify the voices of the kids that are just like us.

Sweet dreams, everyone.

What I learned in my first week of using my AAC device in public

I have been an AAC user for much longer than I’ve had a dedicated device. I use verbal speech about 50% of the time, and before AAC, it would just not go out or socialize during that 50%. After learning ASL and downloading some apps on my iPad, I communicated a lot more freely with the people close to me using AAC. Yet, in the several years I had AAC on my iPad, I used it only once or twice with strangers. I order online for food when I need to, I gesture, or I force words out (knowing that I’ll shut down much harder later. Starbucks mobile order is a godsend.

One of my reasons for getting a dedicated device though, was that the volume amplification allows me to actually be heard in public. So when I got it, I wanted to make an effort to use it in public, so that I didn’t become more afraid of it. With COVID-19, I don’t go out much to begin with, but I learned a lot in just a couple experiences.

First, I went to IKEA. IKEA is a hellish maze of furniture showrooms, plus a section near the end where boxed furniture is warehoused for you to grab for yourself. I had never been in an IKEA before, but my fiance(e) wanted a chest of drawers that would have cost more to ship than the item costs itself, and driving the hour and a half sounded doable in order to do something nice for my sweetheart.

 My first obstacle was figuring out where to go. The online listing gave me an “aisele” and “bin” number. I was confused though, because the aisle was 29, and the map of the store showed only 28 areas. I went to ask the sales person in the dressers section. It would be awkward to hold my device while holding my phone and cart. Here I learned:

The device isn’t always the right tool.

I showed the salesperson the listing on my phone, and they told me to look downstairs in the warehouse area. Apparently the sections of the store are numbers for shits and giggles, and the “aisles” are in the warehouse. At checkout, I tried to get my device ready for the question I heard being asked of everyone in front of me “cash or card” but it turns out that

having my hands full is more frequent of a state than I thought.

I flashed my card at cashier and got out with no words. Then, I went to buy lunch at the cafe area. I wanted meatballs. I successful used my device to say “Can I please have meatballs?”. The cashier leaned in with a quizzical expression. I turned up the volume. “Can I please have meatballs?”. The cashier laughs, “uh-oh, I can’t hear you”. I turn the volume louder. “Can I please have meatballs?”. There we go. I got my meatballs and I made a mental note:

Louder! No, really, louder!

A week or so later, I went to the laundromat. The laundromat is a loud, bright, smelly sensory mess. I had also never been to this laundromat, as we usually do laundry in our apartment building. I went to the laundromat because it didn’t require quarters, which are in short supply. At the laundromat, 

getting someone’s attention is the most difficult part.

I hopelessly try to intercept the person leaving the bathroom to get the bathroom key. My “excuse me” goes unheard, but she notices me moving and hands the key over. When I want to ask someone how long it takes for the dryers to dry, I physically walk around the counter to get in her line of sight before I ask “how long do the dryers take?”. She is confused and tells me they are 25 cents for 11 minutes, and you can do however long you want. That’s not what I meant–I meant ‘how powerful are the dryers?’, but that was my social confidence used up, so I just put a short dry time and figured I could add on as needed.

I stop at starbucks. I have ordered my drink ahead, but I don’t know if their bathrooms are open. They ask for my name at the counter, and as I fumble for the device, they say, “oh, no, I bet I have it here”, and read off the names for me.

People accommodate you faster than you can speak, it seems.

After I indicate my drink, I use the device to ask if the bathrooms are open. They say they’ll watch my drink for me, and I shoot off a “thank you” as I pick it up and leave. Success!

Why offer multiple AAC choices?

I can’t pretend I have academic studies, or know what advice to give you.  But I see all the time that people discourage introducing more than one system to a child.  Most kids are going to choose just one anyway, and you might see that two (or twenty!) do more for a specific person than one.  Most autistic adults I know that chose their own system change AAC based on the situation.

I use LAMP Words for Life (and very soon my device will arrive with, Unity!!).

Oh wait no–I use touchchat.

Hold up, I’m a proloquo2go kind of person.

Nevermind, I’m a typer.

Look at me! I’m signing to you.

Holy cow…I’m tracing letters on the palm of your hand.  I’m gesturing.  I’m using a core board plus letterboard.  A partner assisted scanning book comes out of nowhere.

Let’s talk about how all these systems help me.

LAMP: I’m the fastest here, and I have to type the fewest things.  Unity is even better for me, as I usea big variety of vocabulary.  

TouchChat: To be honest, I only pull this out for our Alexa, but the built in vocab for that is awesome.

Proloquo2go: Most of my kids I’ve taught have proloquo, so I’m pretty familiar.  My speed tanks here and I get frustrated looking for nouns, but I use it because it’s on my phone and apple watch! It’s great when I suddenly need to communicate something and my tablet is far away

Typing: Gets me the most respect in public.  Is faster than LAMP WFL if I haven’t used it in a while.  I can use flipwriter to communicate across the table in a restaurant when it’s loud.

Sign language: Easily the language that I have the easiest time expressing myself in, even though I’m barely intermediate and it’s my third language.  I don’t need to bring anything with me.  However, I know exactly one person who signs right now, and they are terrible about forgetting vocab and getting confused by my weird grammar, which frustrates me.

Tracing and morse: I do it in bed in the dark and that’s about it, but communicating at night when it’s dark is an interesting thing to think about for an AAC communicator.  Lots of people plug in devices at night, so they’re not available.

Gesture: Fast, universal, don’t have to explain AAC, still there when language vacates my head completely.  Kind of sucks tbh, but I do see people discouraging gesture (“say it on your talker”), which is super weird to me.

PODD: great when executive function is going haywire and I need to think really concretely (I’m telling you something–it’s about now–etc).  Soooo expensive though.  I really need to find someone who already has the CD’s.

Core boards: Can be stashed around the house.  I can make personalized ones easily.

So that’s that.  Idk.  Think about it.  Obviously if you’re an individual or parent you probably don’t want to shell out the money for all of these, but see if your SLP can offer a few at once and see what happens.  Sign and core boards are free!

**honorable mention to CoughDrop, where it’s easy to make really specific boards, and you can populate a board by making a list of words instead of entering each one individually.  There’s also some great premade robust core sets.  The keyboard has been essentially unusable to me though, so it’s out of the running right now.  You can hook up a bluetooth keyboard, but it still is slow in recognizing my keystrokes.  It has a super long free trial, so check it out if you have a non-speller or slow speller.**

Symbols are not babyish

Let’s start a rant.  Symbols are gotten rid of for middle and high school classrooms (especially “high-functioning” rooms).  People stare at all the symbols I put in my home. Using symbol based AAC as an adult gets a drastically different response than text based.  Parents say that their children type to communicate because their child is “smart”, and “I won’t baby my child”. *

Somehow “visual learners” disappear once they hit puberty, I guess.  Or people say that the written material is visual support. Not that it isn’t, but often not the best.  Most text looks the same, except for sight words. Lots of text is visually busy, and lots of people don’t process language well during sensory overload, shutdown, or meltdown.  Since “behavior” classrooms often have kids without significant intellectual disability, they can be some of the worst offenders for this one. If your only symbols are on star charts for rewards, seriously consider what you’re doing, please.

My fiance(e)** and I are in our twenties.  We have both completed bachelor’s degrees and plan to attend or are already accepted to graduate programs.  Symbols are our saviors. My ADHD partner needs everything in our house to be in sight, or “out of sight, out of mind” kicks in hard.  We both need a visually calm environment. It is not possible to have all the stuff visually available and not get overwhelmed.  Instead we cover bookshelves with curtains (it’s awesome; you should try it) and put symbols on them to tell us the contents.  It’s three years into living together and we’ve finally learned that labelling EVERYTHING is not just a great outlet for my organizing obsession, but legitimately helpful as long as it’s not text based.  Guess what? Text based is basically useless for us.

-unfortunately useless stuff in our house-

-useful stuff in our house-

I like PCS/boardmaker symbols because they are often more visually distinct from one another, but try symbolstix if boardmaker is too colorful.  Real pictures can help if someone already has the idea that symbols are babyish, or if there’s really specific stuff in a cabinet or something (a favorite plate or cup comes to mind, as does preferred food items).  Also if your older students are going to get teased by typical peers 😦

My beloved label maker has sat unused for months, and the laminator and color printer barely get a chance to cool down.

-ironically laminated symbol-

We’re moving next month, but I have big plans for showing off our visually clean and ridiculously labeled new apartment, once I get there.

For a classroom, consider connecting with non-special-ed teachers and looping them into using more symbols for their visual learns as well.  No better way to keep things from seeming babyish than to get everyone involved.

*typing and non-symbol based AAC can be a great choice, but if you call symbols babyish or for less smart people, I’m highly suspicious that your kid prefers it because of you.  Unless you’re already a fast typer, learning a symbol or button based system with 1-3 hits for each word is going to be faster in the end than learning to type, because most words are longer than 3 letters.

Also, don’t you dare not teach literacy just because I’m saying symbols are good.

**feel free to let me know if you have a better way of spelling this with a nonbinary partner 

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