You learn early on in your autism battle that when fighting a dragon, you don't stop when you're tired. You stop when the dragon is tired. And one thing you never ever do- is give up.
I have two amazing boys with autism. Parker is 6 and Greyson is 8 years old. I immerse myself in their world and therapies daily. My empath personality lets me feel the smallest percentage of their struggle. Even that small part is unbearable at times. It's also that voice in my head that reminds me that I must do everything possible to help them navigate the world as independently as possible.
When the autism portion of this life journey began, I was paralyzed by the future and the "what ifs" I feared would never come true. The biggest- What if they never call me mom? The thought took my breath away. I couldn't bear to hear other moms at the playground complain about hearing "Mom, mom, mom, mom, mom", all day long.
Just one time...if I could just hear it once, I would pray.
We did two one hour sessions of Speech Therapy during the period of Early intervention, which stopped on their third birthday. We then continued with one hour of private practice Speech each week to supplement what's given at school.
I thought about using Augmentative and Alternative Communication the presented as "AAC" by our ABA therapy program when my oldest was about 4 years old. I wasn't ready to give up on him speaking, so we decided not to really pursue it. After several more years, I thought about it again. My oldest was now 7 and had an additional diagnosis of apraxia in addition to autism. His intelligibility by unfamiliar listeners was about 10%. And I didn't see his language sky-rocketing anytime soon, when he couldn't even try words on for size. It would be like expecting him to learn how to ride a bike- without being able to use an actual bike to teach him.
So I decided then, about a year ago- that I would give up. I would give up on my hopes and dreams of him speaking and having conversations and telling me about his day. I felt like at the very least I was compromising with hope. By this time- at least he could say "mom"- it comes out as "mah". He can request preferred items and food- at least in ways I can translate for others. "Dit mies" are fries and "hah gog" is hot dog. I knew him in ways better than a mom might know a boy who could talk. I knew every sound, every look, every need he might have...or so I thought.
After an AAC Evaluation, our District recommended we use LAMP- Language Acquisition through Motor Planning. I watched every video and tutorial I could on it. I spent hours adding in custom pictures of people and preferred food and toys. I was able to use it to have conversations. But after a month's time- I just didn't like the app, and it just didn't seem like it was going to be able to take him where he needed to go language wise.
He spends 30 hours at school a week, and about 60 waking hours outside of school, so we needed to use a program I was completely sold on, and I wasn't sold on this one. I could go into the reasons I didn't like it- but the truth is- it's a great app, and lots of kids are successfully using it. It just wasn't a good fit for us.
Based on my son's strengths, (he is great at visual scanning, generalization of pictures, and sorting categories) I wanted to trial Proloquo to Go (P2G).
P2G is a symbol-supported communication app that promotes language development and grows communication skills, from beginning to advanced communicators, according to their website. I loved the easy to recognize symbols, the fact that a picture and a word can be put on the sentence strip (head start on reading for the win!), the way they categorized their icons and the fact I could change the grid size on every single page. I went against the District's recommendation and classroom roll out which was heavily focused on fringe words. After much research, I wanted to tackle AAC using a core word approach. I hired an outside Speech Therapist who specialized in AAC to help me customize a program for Greyson. I spent hours tailoring it to be clear and easy to understand and functional for my son's needs.
I started with the largest grid size we could (A few steps above his developmental level) and hid words and concepts (ie- pronouns beyond, I, you, my) as appropriate, to reveal as his language grew. We had a beautiful home screen that encased on core language. This is what his screen looks like today. In just 10 months we've been able to reveal a lot of new language.
From the beginning, I saw how P2G could not only help him communicate his needs of today, but it could also help him develop language. He was finally going to be able to learn to ride a bike- by actually using a bike!
We focused modeling on core words. Core words make up most of what we say in typical conversation and writing. Many studies across different languages and age groups have found that about 50 words account for 40 to 50% of what we say, 100 words account for about 60%, and 200 to 400 words account for 80% of the words we use every day. (source)
Greyson already had a strong concept of highly motivating fringe words (nouns); his receptive language is great. Words like "fries", and "Lightning McQueen" and "cars" and "trains". But what was missing was an understanding of those harder to understand core words that are not associated with something tangible or "pictureable". Words like "get"," stop", "here", "watch", "can" and "come". The understanding of those types of words is what will help him develop his language.
How do we get him to understand those words?
We modeled like crazy. We modeled and encouraged elicitation of a variety of communicative functions beyond requesting (commenting, asking questions, protesting, negating greeting/goodbyes). At the beginning we also honored all requests that were reasonable/doable. Ice cream at 9pm- sure! (A pony- not so much). But we did try to honor many of his initial independent requests so that he could understand the amazing power of communication!
We focused on a small group of core words at a time. (Training and core word classroom material found HERE.) Fringe words are highly motivating, and are the glue that helps contextualize what the core words mean.
More recently, I also got my own ipad, and using an app called Dropbox, I downloaded Greyson's specific language on my device. I use it to model what I believe Greyson would say based on his behavior or the setting, ("I don't want a banana", "Can I have chips?" "My Mom looks really young.") Ok, fine- I made up the last one but with a little Botox, it's possible. I also use it to speak for myself. Typical children learn to speak by hearing others using spoken language. AAC users learn to communicate by watching others use AAC.
I created some visuals to act as adult prompts. This way it was easier to remember which core words we were focusing on. I used velcro to attach each icon so they could easily be switched out. I also made a copy for his classroom.
And we made some base conversation starters to help adults model a variety of different ways. Each sheet was location specific. We did one for the kitchen, the front door, and the playroom too. I created specific ones for school based on function as well.
We model in the natural environment, as well as in more structured ones. I'm not afraid to make mistakes or change what I was about to say on the fly. We've started using P2G with my youngest son too. He does not have apraxia, but he does have autism and the language delays that often accompany the disorder.
HERE we are making banana bread.
HERE Greyson is using it to order ice cream
Here are some tips I've come up with that have been instrumental in helping us implement AAC. MLU- is a fancy term for Mean Length of Utterance. Basically- how many words do they use in a sentence. If a child only can label items- "ball", "bird", you don't want to model 5 word sentences. You would start with sentence 2-3 words. "Yellow ball." "I see bird."
Now Greyson is beginning to use it independently. It turns out, I didn't actually always know what he wanted and needed. Now he can tell me when he is sad. He can tell me he actually wants to ride an escalator, instead of go get ice cream. He can tell me his teeth hurt. All of these are things he has expressed to me all on his own by using his device. It's remarkable to see how far he has come in such a short period of time. We still have a long way to go, but I'm confident with tons of modeling and classroom and ABA support, we can and will get there.
He even negotiated with me when he didn't want to go bowling.
When I think of language, its like a ticker tape running at the bottom of a screen. As the words come in, we process and assign meaning. If need be, we respond. But with many children with autism- they need pictures to comprehend. For them, I picture language not like a ticker tape but like bubbles, and once they pop- it's impossible to remember and put them in the right order again. AAC gives my son the visual he needs to process and understand language- making it a little more permanent in his mind.
I can't imagine how it would feel to not be able to express yourself. Words heal, they connect, the build, they express, they validate, they request, they delight, they entertain, they express disgust and disdain...I can't tell you how much I love words, and the fact that my boys struggle with them pains me completely. They need to be able to use words to do all those things too. I must teach them.
I can't forget to mention- my son's expressive (spoken) language attempts have doubled since using the device. And he's FINALLY using a handful of verbs beyond, "I want x". All the data says a child's expressive language increases by using a Speech Generating Device- but to actually see it and hear it in our home blows my mind. My only regret is that we didn't start this sooner.
Other AAC resources:
Proloquo 2 Go
ASHA Position Statement on AAC for SLPs
ASHA Technical Report for SLPs on AAC
Article: Don't Demand Prerequisites-( PECS use before AAC is NOT required).
This is the brand of case we use.