Communication
AAC in the News
Published July 22, 2009 @ 04:00PM PT
ABC News did a little feature on the speech device I've been using a lot lately (my initial report and quick review). I feel a little awkward going on about this specific product (see Kristina's post on blogging and product placement), but I do feel that the broader themes of accessibility, bringing AAC to the mainstream, and the value of AAC that is developed with the input of the end users are all items that make P2G writings go beyond plugging a product. These broader themes may be why ABC News felt a feature was in order.
So ABC News--here is the video (also embedded, and, warning, I was only able to get the video to play from the ABC News site in IE). Here is the full transcript of the video.
For the video-lovers, there are more videos of P2G on youtube.
It's good to see AAC hitting the mainstream news more and more. The more ubiquitous AAC becomes in both the mainstream news and in the day-to-day lives of people--the more the public is exposed to AAC--the more that fear and stigma on the part of the public will erode. It'll be a great day when AAC becomes as ordinary to people's sensibilities as eyeglasses.
What Are You? The Wacky World of Funny Accents
Published July 22, 2009 @ 10:51AM PT
There's a farmer's market down the street from me. Rainier cherries were on sale for $2.47 a pound--an irresistible opportunity.
There was no get-in-get-out for me this time--before I'd even gotten a bag for collecting my cherries, I was confronted by crescents of fresh cantaloupe, "have some fresh cantaloupe, have a sample, please," a voice, connection. Say thank you-- "Yes, thank you." Good grief, that melon is good! "Melon is very good."
"Oooo, what are you?" the lady asked me. "You have such an accent! I'm Russian."
This is kind of a funny moment. Do I say, "Oh, I am apraxic!" Or "I am autistic!" Do I say, "I am Italian, but my 'accent' is just a speech problem?" What are you? Always an interesting question.
After a lot of thinking about how much educating I want to do right that moment (none, all I really wanted was to plop those ripe, juicy cherries into my mouth) I answered, "I have trouble speaking." I smiled huge, laughed a little, so that she knows I do not take offense. It's a sequence of steps I've learned, practiced, repeat a lot. I have a few versions of the script.
I met recently with a lady with ALS who is interested in one of the speech devices I use. I handed her my device with my "greetings" page open for her to play with and she pressed on "I can hear you just fine." She started laughing. She understood exactly why I have that message. When I'm at a disability-related event instead of a fruit stand, or interacting with someone who has connections to the Deaf community, I get signed at just as often as spoken to.
This is an interesting example of how context and experience plays out in people's assumptions: my "accent" is assumed as coming from growing up as a non-English speaker to some, and assumed to be because I'm deaf to others, depending on what sort of culture one is attuned to.
I long ago got over the childhood torment I'd been put through over my "funny accent." It's just a fact of my life, and I have learned how both accept it and how to help others to understand and accept it also and move past it. Learning how to effectively dispel various not-quite-right reactions to atypical communication is a very valuable life skill to me and to the people I interact with.
Speaking Musically
Published July 22, 2009 @ 12:38AM PT
(I got the idea for this post before reading this one from yesterday by Dora, for reals. Hope it is complementary.)
I've thought a lot about music in seeking to understand my son's communication, both verbal and non-verbal. Charlie has been attentive to music from when he was an infant and Jim whistled "We love you Charlie" (based on this song) and "Charlie boy" (based on this song) and I played the piano with a far smaller boy on my lap. He could sing complete phrases of songs when he was 4 or so (it's very rare that Charlie produces a phrase of more than three words on his own). He can read music on the piano and cello at a fairly basic level, but that's reading that has come more readily to Charlie than reading words. He seems to listen for pitch and tone and tune in what people say, as much as to individual words. Sometimes it's the tune Charlie sings that tells us how he is feeling.
So this music education program makes a lot of sense: It's "designed to help children with ASD better understand emotions and learn to recognize emotions in others" as noted in yesterday's Science Daily. Istvan Molnar-Szakacs, a researcher at the UCLA Tennenbaum Center for the Biology of Creativity and member of the of the Help Group–UCLA Autism Research Alliance, is developing what is to be a 12-week program:
Specifically, the children are using a method of music education known as the Orff-Schulwerk approach. Developed by 20th-century German composer Carl Orff ("schulwerk" is German for schooling), it is a unique approach to music learning that is supported by movement and based on things that kids intuitively like to do, such as sing, chant rhymes, clap, dance and keep a beat or play a rhythm on anything near at hand. Orff called this music and movement activity "elemental" — basic, unsophisticated and concerned with the fundamental building blocks of music.
The 12-week program uses elements from the Orff method — including games, instruments and teamwork — and combines them with musical games. The idea is to pair emotional musical excerpts with matching displays of social emotion (happy with happy, sad with sad, etc.) in a social, interactive setting.
"Music is a birthright of all children. To be able to listen and appreciate, sing or participate in music-making are as essential to development as mathematical or linguistic learning," Molnar-Szakacs said. "The purpose of this work is to provide a means for awakening the potential in every child for being 'musical' — that is, to be able to understand and use music and movement as forms of expression and, through that, to develop a recognition and understanding of emotions."
In some ways, Charlie, through no specific teaching on Jim's or my or anyone's part (save for his former, much-missed piano teacher) indeed is "able to understand and use music and movement as forms of expression." I'd even say that he has developed "recognition and understanding of emotions" though since Charlie's verbal language is limited, I can't be sure of that. Nonetheless, it's precisely because his language is limited that Charlie seems to rely on music both to express something emotional and to pick up on the emotions of others. And certainly combining music with movement (moving a finger to push down a piano key or pluck a string) has something, perhaps, to do with why Charlie has been able to read musical notes after relatively little instruction, whereas reading words has seemed an activity very challenging for him to grasp.
Lately, due to his sound sensitivity, we've had to take a hiatus from the music instrument playing. For most of his life, Charlie has enjoyed listening to CDs in the car and long ago appropriated the CD case to play the DJ (unfortunately resulting in many CDs being smeared and smudged beyond playabiity). For the past several months, he has been saying no to the music and car rides have been quiet but he recently has been interested again. His latest favorite is a "Soulsville USA" CD and, I kid you not, the biggest smile appears when the song "Starting All Over Again" comes on----almost too appropriate.
And just another way that music often does the talking.
Words Don't Always Say What You Think They Do
Published July 20, 2009 @ 12:30AM PT
I’ve written regularly that my son Charlie is “minimally verbal” and can’t talk too well. I realize this gives the impression that he is mostly silent and that our house is quiet. The reality cannot be farther from the truth and not just because Jim and I are something of “big talkers.” Sound, including the sound of his voice, fills our house. Not always English, not always full sentences (rarely, actually); words and not always full words.
The title of one of Dora’s posts, Just Because I’m Quiet Doesn’t Mean I Don’t Understand with a slight revision---”Just Because I’m Not Responding Doesn’t Mean I Don’t Understand”---comes often into my mind. Another variant would be “Just Because I Use a Word It Doesn’t Necessarily Mean What You’re Expecting.”
When he was younger and got very upset, Charlie often mentioned things he liked very much: burgers and fries, sushi, Gong Gong Po Po (my parents). This was very confusing and teachers, therapists, and Jim and I alike often responded by telling him that he could have X when he was calmer. But often he only got more upset even when he got the requested item. Teachers would ask if he were hungry and offer Charlie food that he inevitably did not want.
It might be suggested that we were giving him some item---”reinforcing” him, to speak a bit behaviorally---before he was really calm and really giving him what he wanted for having a tantrum. But it was only gradually that Jim and I realized, Charlie saying the words for those preferred items was often a sign that he was, indeed, very upset. He wasn’t hungry and, when sometimes given some food item, he often only seemed even more upset afterwards.
Jim and I being the language-dependent individuals people that we are, it was at first quite a mystery to figure out what was going on. Gradually we could see patterns. We know that Charlie adores my parents, but why did he he cry when he first saw them at the airport? We slowly realized that this was a sign of a deeply emotional response on his part, with Charlie in part anticipating how he would feel after my parents left again and he missed them. This whole situation was a bit difficult on my parents, but they’re ultra-accommodating (actually, they’re generally just fabulous, not to get too gushy) and made it clear, they were ok with Charlie crying when they first showed up, as they knew he loved them. Often, within an hour of their arrival, Charlie would be all smiles.
Of course we try to teach Charlie as many words as we can. Speech therapists have gone back and forth about him having “problems with word retrieval.” I’ve come to suspect that he often does: He may well know all the words directed to him, and have many more in his head to say, but connecting what he wants to say with the motor activities involved in saying the word can be a lot to process. I suspect that, at such times, Charlie does what I’ve done when speaking (trying to, that is) in a foreign language: He uses the word that’s the closest equivalent he can think of, or that he’s most used to saying, or that first comes to mind.
These are some of the reasons that I’m not always sure what Charlie means when he says “no.” Sometimes he really means “no” as in “no.” But other times (based on what Charlie’s done afterwards), “no” is more of a “no not yet” or “no I’m still thinking about it” or “maybe.” Or something else entirely. Often we try to suggest other things that Charlie could say, but when Charlie is stressed and not sure what to do or what he wants, having him talk more is placing yet one more demand on him.
We want to take Charlie at his word and not assume that he has no idea what he’s saying. What I’ve tried to suggest here is that there’s a bit more of gray area to understanding Charlie’s speech. After all, many words for many of us mean much more than they might commonly denote, and certain words may have special associations that are part of highly personal, deeply meaningful memories that get lost in the translation.
Image from hemmy.net.
On Miscommunication
Published July 12, 2009 @ 02:53PM PT
There's been a stream of posts on communication (and an action for accessible communications---please sign if you have not yet!). Communication is one of my favorite topics, whether considering an augmentative device for Charlie or just trying to understand what he's telling us, with words and without.
Charlie communicates plenty, but one thing that's he's not yet able to do is to explain what happened to him. Most of the time, he's either with us or at school, and getting a detailed-enough, honest report about his day has been a long-term effort. We've tried forms with boxes to check off, communication books, and the current system---email. Charlie's teacher (he has the same teacher for Extended School Year as he did during the regular school year) writes to me every day; on the days that she is not in the classroom, she usually gives us a report about what went on the day before. There's usually a comment about "behavior"---something or other usually happens (though I'm happy to report that nothing major did the first week of ESY).
I'd like these emails to be more about what Charlie does or learns, but the reality is that the "behavior business" needs to be documented and anything major written up in an incident report, which we are supposed to receive a copy of. The many things that Charlie is learning and accomplishing often get snowed under. But then I remember some of the notes I used to receive from Charlie's teachers, which were generally positive but really didn't give me any idea of what was going on in the classroom:
Charlie had a great day!!!!!!
He's such a good boy.
Charlie did well.
Have a nice weekend.
Teachers are pressed for time and I doubt any parent expects a literary production! Especially when a child is young and still learning to talk and communicate or if a child is (like Charlie) not very verbal, teacher's notes often feel like my lifeline to Charlie's day.
There are only four students in Charlie's class and as many aides, so his teacher has the time to focus on each child sufficiently. And of course, having a good, open, trusting relationship with one's child's teacher is essential, but that is a topic for a whole other post (and one I'm going to refrain from saying more about at the moment, as we have a district-requested IEP meeting this Tuesday morning.)
It's not only Charlie who has trouble getting his message across---helping him to do so has made me more than aware of my own miscommunications.
Communication (is More Important than Speech)
Published July 11, 2009 @ 11:38AM PT
Great to see an article from Lincon (NB) about the awesomeness of AAC (Alternative and Augmentative Communication). (Not so great is some of the horrific language the reporter used, but that's a topic for a different post.) This article addresses some key topics in AAC-intersect-autism.
--Fears that using AAC will prevent someone from speaking / communicating are unfounded; AAC is intended to facilitate communication and has at times been a bridge to speech.
--Communication is not speech!
--Removing frustration that comes from speech, language, or movement difficulties improves both quality of life and behavior (because 1. one is not frustrated all the time, and 2. one does not need to resort to unpleasant behavior to get the message across).
--Enabling communication, no matter what the form, radically changes how people will percieve an individual (so some care needs to be taken about assumptions).
--Once the idea of speech is let go of, some far more exciting things may emerge,
...[AAC] also allows him to have meaningful exchanges with people. Family pictures have been downloaded to the device. Ask Kyle about his family, and he will pull up pictures of him with his mom, dad and sister. He will show you his home in Henderson. He will show you pictures of things he likes to do.
Through the DynaVox, Kyle's personality has emerged.
"He's more animated," Merrihew said. "He likes to be silly."
"He's really funny," Bailey added.
"Every day we learn something we didn't know he knew," Bailey said. "We're just trying to get it out."
--Even for those of us who have some speech, we may not always be able to use it to communicate; further, some of us may need AAC in order to initiate conversation or "find" words. This is OK, because not only is commuincation not speech but
--Communication is more important than speech!
This are all key points I hit in every presentation I give on AAC, whether it's for educators, support staff, or scientists and policy makers. But what makes the Nebraska story so much cooler than my usual writing is that it doesn't state these points in a general, bulleted list or with the dryness of a formal presentation, but with vibrant personal stories. DynaVox device provides a voice for area boys with autism has made bookmark -and-share-repeatedly status.
(though don't forget, there's more to the success of something like this than just a device)
Behavior = Communication (It Just Makes Sense)
Published July 11, 2009 @ 06:04AM PT
Sensory overload and difficulties with communication: These are the two main sources of major anxiety in individuals on the spectrum that I've heard mention of again and again from many people I've been in touch with. And they are the two things that Jim and I keep returning to when Charlie's gotten upset.
It's only been in the past year plus that we've really noted Charlie's extreme sound sensitivity. It's not only loud sounds that bother him, but high-pitched ones, no matter how soft. (He even puts his hands over his ears when he's sleeping if there's a noise.) When he was younger, there was a time when he'd sniff his food before eating it, and when he licked the salt of the potato chips before eating them. (I only figured out what he was doing with the latter because one of his ABA therapists said she used to do the same thing.) He definitely is alert to textures and likes his clothes to be light and loose and soft and not too bulky. (Wool sweaters? fuhgeddaboudit)
I have to shake my head when I find myself making a big deal about Charlie's sensory sensitivities as unusual responses to sensory stimuli were the one thing that Jim and I were quite sure that Charlie, when newly diagnosed, did not have. In those days, as now, Charlie's communication disability was a major concern; Charlie's initial diagnosis from the St Paul Public School District was, indeed, that he had a "communication disability" (I think they gave him that in part because I was so distressed about the whole situation; as you can see, things have been changed quite a bit).
I've been reading (thanks very much to Bonnie) a book called Autism Life Skills: From Communication to Safety to Self-Esteem and More---10 Essential Abilities Every Child Needs and Deserves to Learn by parent and professional Chantal Sicile-Kira. It's sensory processing, communication, and safety that Sicile-Kira notes are "the top three areas people [on the autism spectrum who are now adults] wished they'd received help with as children" in the book's introduction (p. xxii). The first chapter, "Sensory Processing: Making Sense of the World," encourages parents to keep their child's sensory issues in mind when addressing behavior problems and even when undertaking a Functional Behavior Analysis (p. 12). And Sicile-Kira also notes:
...behavior is communication, but we [non-autistic individuals] are not always so good on picking up what the message is. (p. 5)
Yet more reasons why life with Charlie means thinking differently, and taking things at a different, often slower pace and learning to pull carefully rather than push. As I've noted, Jim and I are quite the big talkers and a lot of being Charlie's parents and advocates has meant learning that what he does---his behavior---can tell us quite a bit about what he's thinking and trying to communicate to us. It also suggests why words aren't all they're cracked up to be, and why we've learned to use our other senses, in the hope of making better sense of things for Charlie.
Lavender image from Spicelines.
