Welcome to the winter newsletter of WI AAC Network.

As I am writing this in my bedroom and listening to a book, snow is coming down and it is looking beautiful. It reminds me of a story. I was in fourth grade at my grade school the fourth grade classrooms are on the 2nd floor and a huge window at the end of the hallway. I remember looking into that window each morning and I said to myself, I wonder if anyone like me is somewhere out there. I didn’t know any adults who are using AAC and I only knew two kids that were like me. I was feeling frustrated and lonely. I thought about why I am this way and as an adult what I am going to be doing. I remember one day I was looking at the window, I saw something like a cardinal coming into the window and I believe that the cardinal was there to say that you will find your people soon. The cardinal was right, in 2007 I found my people and community. That was when I went to a camp for teenagers who use AAC and could go to college or have a job. It is crazy to think that was 21 years ago when I looked into the window at the end of the hallway. If I could talk to that boy who was feeling lonely, I would say this. Hey you yes I am talking to you. Mike, you have a great future ahead of you. Ok, you will have a hard time for a few years but your family will always be there for you. You will be getting a better communication device soon that will open up opportunities for you. It will be what you need to be successful. I know what is in store for you, I am excited about it. See you in the future!!

Maybe, your child or your students have their own window that they look out of a window and wonder what their future would be like. Please say this from me, you will have a great future and you will do phenomenal things in your life. Mike Hipple

In this issue:

• Welcome by Mike Hipple
• Our AAC Journey by Cathi & Duncan McCutchan
• Movie Review of “Out of My Mind” by India Ochs
• Lesson Plans & Resources for “Out of My Mind”
• Resources from ISAAC (AAC Book Club; Friends webinar)
• WI Project Forward (AAC Decision Tree)
• Upcoming Virtual Training – Bridge School & ATIA

Our AAC Journey

By Cathi & Duncan McCutchan

My son is very creative and expressive in communicating what he needs, wants, likes or dislikes. He also takes pleasure in pointing out his observations and sharing his passion topics. So he uses a Total Communication approach, moving seamlessly between verbal, gestural, ASL signs, and/or AAC responses.

I prefer to use the phrase “Total Communicator” instead of “Nonverbal.”

My son isn’t actually nonverbal, he can talk in short phrases; he just struggles with articulation and longer sentences. His AAC program helps him to clarify and communicate more effectively.

Our AAC journey began after he started kindergarten. We tried a few simplified systems to start but it was his trial with ProLoQuo2Go on an iPad that opened up our world. The PLQ2Go program was very easy to customize and I had created a page for him with feelings icons. Because he and his brother were fighting quite a bit while playing, I added phrases like “I’m sorry,” “I want an apology,” “You hurt my feelings,” “That makes me mad,” in addition to emotions. I had extra space so I also added “Please play a game with me.” Some time later I found myself in a frustrating situation with him and both of us were upset, but calm. I pulled over his AAC and modeled that I was frustrated and I was sorry. Then I offered the iPad to him, fully expecting him to tell me I hurt his feelings or that he was mad. He looked angry. But instead, he told me he was sad and he wanted to play a game with me. My own irritation melted away and we set up a game to reset and reconnect with each other. I was so thankful to have this communication tool instead of guessing, and missing, what he may be feeling. The whole point of AAC is to give voice to the person utilizing it and it was so validating to see such an obvious example when it works.

On the flip side, if the AAC program is not a good fit for a person or family then it adds to stress and communication missteps. And can exacerbate behavioral challenges. We had several negative experiences during elementary school when my son’s team switched him from his PLQ2Go to a motor-memory device which used an abstract system for vocabulary and required extensive training. The school tried to standardize AAC and all kids with communication disorders were pressured to use the same device. Losing his best way to communicate caused a big spike in acting out behaviors. Additionally, staff  were pressuring him to use his AAC when his emotions were still high and he couldn’t process requests, resulting in him pushing it away or throwing it. It was a frustrating experience. But don’t let missteps set back progress! I consulted with an advocate, began private speech therapy sessions, and ultimately moved my son to a different school district. We reinstated his Total Communication methods, got him back up to speed using PLQ2Go and he started making encouraging progress again.

As a high school student, we now create pages together, especially to help him share stories of his sporting experiences or family events with friends. We even have a big folder of jokes; I use the space key generously so the AAC voice pauses before saying the punch line. He loves to add new jokes.

While my family has had positive experiences with PLQ2Go, I believe the benefit of trialing numerous devices/systems to see what works best for each individual communicator is the way to go. There are so many options. It is truly amazing how much the technology has evolved and improved through the years. And it’s worthwhile to keep up with new innovations and consider trying new approaches as needs change.

Total Communication is not just about giving people a way to communicate more effectively – it’s about recognizing and celebrating everyone’s voice.

Sometimes I Need a Push, But I Don’t Need to Be Pushed Around:

One viewer’s thoughts on Out of My Mind (the movie)  By India Ochs

Prologue: Before diving into the film, I wanted to open with a few warnings/disclaimers.

Trigger warnings:  The movie will not impact everyone in the same way, but it is important to note the following trigger warnings for those who have not watched it yet:

• Students with disabilities placed in segregated classrooms
• Discrimination/Bias/Bullying against people with disabilities, especially people who use Augmentative and Alternative Communication (AAC)
• Young child involved in a car accident (character is injured but fine)

Personal disclaimer:  I was kindly asked to write this review by a fellow AAC user.  However, just like the movie (and book) is about one young girl with a disability who cannot rely on natural speech to be heard, I am writing this review through the lens of a person born with a severe, undiagnosed, speech disability, who has not experienced much of the things we see Melody experience in the movie.  So, while I relate to things in the movie, like I relate to many characters in many movies, my perspective is just as much as an ally/advocate as it is being a person who uses (text based) AAC methods.

Friendly viewing suggestion:

• Watch it once for pure enjoyment
• Watch it twice to see what you missed the first time
• Watch it three times to see what the producers/writers/director missed

Thoughts on the Movie: I usually don’t include descriptions of movies in my reviews, but for those who might have no idea what the movie is about, here is a one sentence summary for you.  Melody Brooks is navigating life as a six grader with cerebral palsy who uses a wheelchair and cannot use natural speech to fully communicate.  The movie is based on the book by the same name by Sharon Draper.

Let’s start with the positives 😊 The easiest way to describe “Out of My Mind” is simply this: it is a nice, clean, family movie. The average parent will not have a problem with any “coarse” language in it given the language is totally appropriate for a 2002 tween and all in context.  I would recommend the film for anyone to watch, although some in their teens/early 20s might find it a bit boring, which is to be expected.

I am a strong supporter of having the book in 5^th grade general curriculum (as happened with my son’s class and many other school districts) as well as having the book as required reading for any future professional interacting with people with disabilities.  I also firmly believe the movie should be part of those lessons.  Seeing the story visually, even if truncated, is critical for people to fully process the messages – especially for those who learn better with visual references.  This movie is another step forward in raising awareness not only of the lives and potential of students with disabilities, but especially for those who use (OR SHOULD BE USING) AAC.  Regardless of any critical analysis I might mention later, this movie was long overdue, and we need sequels for the other two books to keep the spotlight on people who use AAC as full members of society.  I cannot wait for the day where we don’t just list on one hand characters who use AAC in film or TV.

The actress who plays Melody, Phoebe-Rae Taylor, did a phenomenal job.  In her first acting role on screen, I found Taylor especially masterful in her facial expressions and body movements.  You can see the worry and panic when Ollie jumps out of the bowl. You can see the frustration and anger, even if subtle, throughout the storyline when people are not taking the time to listen to her.  One of my favorite moments in the movie is when Dr. Ray is at the door of their house and Melody is on the floor with her younger sister Penny.  Melody has just enough room to see who is at the door, and you can see how she is using all her energy to stretch her body and move her head to be able to see what the adults are talking about, especially given how engaging Dr. Ray had been in a conversation with her earlier in the day.

In terms of content, the film does a good job at highlighting the top line issues someone like Melody would deal with on a regular basis.  We see the angst of being 12 years old and all that is throws at kids at that age as they just want to fit in, dress cool, have fun, make friends, get crushes etc.  Who cares about how your body is in cars or bathrooms …as long as you dress like your friend! Rose is one of the most accurate characters in the movie, yet I wish we saw as much of her development as a friend that we see in the book.  But still – the movie portrays Rose enough to see a fellow peer who is caring and fun yet completely different when around other friend groups. Although different from the book, Rose lashing out at Melody when she became an alternate in Whiz Kids may be hurtful to see, but totally human for Rose.  The neighbor also is not fully developed like in the book, but for those who have read the book,  we can still see glimpses of Ms. V being someone who takes time to treat people like human beings faults and all…and how if you do let people communicate (in whatever method they want/can), you will hear what they have to say and see them for who they are.

Even though there is much frustration when watching school staff and other professionals interacting with Melody, the audience very well should be furious at how Melody is treated!  The film puts a spotlight on how students with disabilities are treated on a daily basis, especially if segregated from general education classes and/or if they cannot fully communicate by natural voice.  The scene with the IEP meeting was spot on, with the administration not listening to the parents at all and where is Melody!  She has every right to be at the meeting!  When I heard one staff member tell the dad that it is hard to be objective of his own daughter’s limitations, my first reaction was “Hello! IEPs are supposed to put in all support needed for achievements, not focus on limitations!”  The assessment for the AAC device was another frustratingly absurd moment, representing not only how wrong it is to make people “qualify” to communicate, but also reinforcing how Melody’s intellect does not fit assessment criteria.  I say this later in more detail, but as much as the movie makes it look normal using low tech AAC such as communication boards or head movements, the film fails in putting it at the same level of communication as the high tech AAC device.  High tech devices should not be the only way to have a voice.  And yes, I wanted to slap the principal when scolding Dr. Ray after calling out the social studies teacher for excluding Melody from Whiz Kids. It did reflect every biased school administrator who doesn’t want to “deal” with students with disabilities because of the “burden” or cost, totally violating both the law and humanity.  The reality is, as frustrating as that scene was, it justly showed the bad guys among us.  Nothing fictional about it.

Critical analysis:  Whether it was blatant ableism or just something that annoyed me, I did want to make note of a few things that could be – or should have been – different in the movie.

The opening narrative has one of the most frustrating lines in my view, where Melody is saying “I can’t talk. I don’t have a voice.” And then tells the audience to just listen.   I understand the writers are trying to set the tone for the core of Melody’s struggles, but to me, the “I don’t have a voice”, especially coming right from Melody, is one of the most ableist parts of the movie.   Just because someone can’t talk doesn’t mean they don’t have a voice, and we see from the very beginning that Melody has a voice – people just don’t listen to her!  By including that line in the opening monologue, it also sets the framework for how much the movie minimalizes communicating through low tech methods like communication boards.  Again, from the very beginning we see Melody having access to a communication board at all times – whether in her chair or in the bathtub, etc.  She is always able to communicate with anyone around her, she always has a “voice”, but the barrier is all the people who don’t take the time to let her speak through the communication board.  If the writers had just said “I can’t talk” and then urge the audience to just listen, that would have been totally acceptable in shaping the arc of the storyline.  But no, they had to have Melody be the one to say she doesn’t have a voice.  So not ok.

Along those same lines, although common for adults to not listen to people with speech disabilities, how the father reacted when Ollie jumped out of the bowl is also reflective of how ableist it is to not take the time to listen to people that YOU KNOW can say something.  I totally get the “I am not listening to you” line that the dad said out of frustration – that is something any parent can say to any kid at any time.  What got me was when they went in the car, and the dad apologized for yelling.  And then got mad that Melody wasn’t accepting his apology. Classic non-apology apology. In my view, what the dad should have done after calming down was ask Melody what she was trying to say before.  That would have been the right thing to do.  But he didn’t and we had to wait until Melody gets her AAC device before she says what she was trying to say in that moment.  I get that level of patience to still want to say what you couldn’t say in the moment, but it should never have to come to that.

Our household has routinely had closed captioning on since my son was very young, but it was only when helping to review the award-winning short film Listen! that I took particular notice of how films are edited.  And so, that is why the very first thing I noticed, as I was watching this much needed production with multiple consultants involved with AAC, was the very apparent ableism in the closed captioning when Melody is talking.  Right away I noticed how when Jennifer Aniston was narrating for Melody, the closed captioning would start each line with “Melody:” but when Melody used her new AAC device to talk, the closed captioning would start each line with “Medi-talker:” (the name of the AAC device).  Didn’t the producers ask anyone involve with AAC to verify the closed captioning?  Is it that difficult to understand that no matter how Melody is communicating, it’s her talking!  Not the device.  A friend commented they could have said “Melody’s device” or something similar, but no matter what the label, it should be referring to the character, not manufacturer, when reading dialogue in the closed captions.  When watching it a third time, I also noticed they say “Melody coos” when making a sound.  Maybe it’s just an American thing, but coos usually are associated with babies.  Way to unintentionally infantilize a 12-year-old with a disability that makes noises to communicate or express emotion – none of which were actually cooing.  One more quick thought circling back to the narration by Jennifer Anniston. I am sure there are many reasons to have Aniston as narrator (star marketing, Aniston involved with the film, Phoebe-Rae Taylor actually named after the character in Friends)yet why couldn’t we have an actual inner “12-year-old voice” through Taylor’s own voice.  She has cerebral palsy but can talk.  Wouldn’t that be more authentic to the character?

The movie does not come close to the book but that often happens when books are adapted for film.  I wish viewers were aware of just how smart we see Melody at the beginning of the book, so there is no question about why she could learn to navigate the new AAC device so quickly.  I totally get many people of all ages take much longer to learn a new AAC system.  Yet that is not the case for all AAC Users, and I totally see Melody having that quick learning curve, especially with a photographic memory.  The movie also switches the mom’s perspective of Melody.  In the movie she doesn’t want Melody moved out of the special education classroom.  This is a very common fear/feeling by parents.  However, it goes against the mom’s full belief in Melody’s competence from an early age in the book: in the book the mom reads a doctor the riot act when he suggests Melody should be institutionalized or placed in a nursing home at age 5, and the mom immediately enrolls her at the school after leaving the doctor. 

I can’t fully place this in the critique section, but I think this is the first movie I ever questioned the music on.  The score for the film is fine, but the songs picked for background music had me scratching my head in bewilderment.  Specifically, the scene where they play Dreams by The Cranberries frustrated me to no end.  I am someone that reads a lot into how music is integrated into films (or TV shows), but it took extensive research to figure out the song and its purpose.   Once I saw the lyrics for Dreams, I could justify why it was included in what is meant to be an inspiration themed movie, yet why was the music so faint and just a bit “off” that I had to rewind that scene five times, look up the song, and watch the scene another three times? And it is a song most people my age recognize- it just did NOT “resonate” with the film to me – even if the lyrics were appropriate.  I felt a similar empty feeling with These Are Days by 10,000 Maniacs during the end credits.  Another acceptable song with appropriate uplifting lyrics, but surely there could be more, better, current songs to rile up the excitement in seeing Melody finally being seen and heard?

For those who found nothing but love for the movie, you can ignore any and all that I said above.  After all, as Melody said in the book, “Delete, delete, delete. No way am I letting their negativity mess me up. I have enough to worry about.” 

Lesson plans to go with Out Of My Mind

Did your class watch or are you going to watch Out Of My Mind? A website called Young Mind Inspired has lessons, activities, and letters that you can send home. They are awesome to use. Please let us know what you like and will use in your class. Remember that Mike is available to Zoom with your class or regular education classes to talk about the book and movie. https://ymiclassroom.com/lesson-plans/outofmymind/?fbclid=IwY2xjawGuFeJleHRuA2FlbQIxMAABHda-R14UCMdm78DRzpVj7o2HrJBaHst6Hd4onzkMN-yopznUoJQV7BTBCQ_aem_uD47dp4qolS7wnXzbh1Xnw

Interviews with Cast of Out of My Mind movie

Cherry Picks

@CherryPicksTV’s Meg McCarthy discusses the new feature film OUT OF MY MIND with stars Rosemarie DeWitt & Phoebe Rae-Taylor and director Amber Sealey in our CherryPicks x @Herflix Sundance Studio. https://www.youtube.com/watch?v=gaH7OjAWxag  (6:52 minutes)

World Screen

In this video interview, Sealey and the cast talk about tapping into the vulnerability needed to tell the story in an authentic way and what they hope viewers (and other filmmakers) take away from seeing this story told on screen. https://www.youtube.com/watch?v=dW6wEP4SvrU (15:26 minutes)

J-14 Magazine

Interview with actress, Phoebe-Rae Taylor on ‘Out of My Mind’: ‘I’ve Never Seen a Character Like Me Before’ https://www.youtube.com/watch?v=uuyiyXXsAjM (4:22 minutes)

3 Books by Sharon Draper – Out of My Mind, Out of My Heart, Out of My Dreams

New York Times bestselling Out of My Mind series follows a girl with cerebral palsy who fights to be heard- Eleven-year-old Melody is not like most people. She can’t walk. She can’t talk. She can’t write. All because she has cerebral palsy. But she also has a photographic memory; she can remember every detail of everything she has ever experienced. She’s the smartest kid in her whole school, but NO ONE knows it. Most people–her teachers, her doctors, her classmates–dismiss her as mentally challenged because she can’t tell them otherwise. But Melody refuses to be defined by her disability. And she’s determined to let everyone know it…somehow.

About the Author – Sharon M. Draper is the New York Times bestselling author of Out of My Mind, Blended, and Out of My Heart. She’s won Coretta Scott King Awards for Copper Sun and Forged by Fire and multiple honors. She’s also the recipient of the Margaret A. Edwards Award honoring her significant and lasting contribution to writing for teens. Sharon taught high school English for twenty-five years and was named National Teacher of the Year. She lives in Florida. Visit her at SharonDraper.com.

RESOURCES FROM ISAAC – International Society for Augmentative & Alternative Communication

ISAAC’s AAC Four Seasons Book Club NEW

Please read about this phenomenal new opportunity and watch our Facebook for more information. https://isaac-online.org/english/news/aac-four-seasons-book-club/

USSAAC webinar on the importance of AAC Friends Groups on January 22nd at 6:00

This webinar will kick off the webinar series for USSAAC and it’s going to be amazing! Join three friends who have known each other for years to talk about their friendship and why it is so important to have friends who also use AAC. ASHA CEU will be available. https://isaac-online.org/english/webinars/

UPCOMING OPPORTUNITIES

Wisconsin Forward Project

The following webinars are upcoming by the Forward team in the next four months. February webinar is AAC Decision Tree: How to do an AAC assessment, you don’t want to miss that one!

https://zoom.us/meeting/register/tJ0ucOupqz8iHdVMVmVyM9qqca0oeRUGQPlE#/registration Al chatbox tutors to help build background knowledge and scaffold learning

https://zoom.us/meeting/register/tJUlf-qtrTkpHN3NgHAxUgNy1c972d7qdc42#/registration AAC decision making process

https://zoom.us/meeting/register/tJ0lfuGgqTgpHtKBGKK7NLnAuoC6OfH9mF9o#/registration Assistive technology Myths and Facts

A six months class on CVI

Check out this phenomenal opportunity for you to learn about CVI over the next six months. Learn more here. https://www.bridgeschool.org/bridge-to-life/conversation-series-on-cvi-and-aac/

ATIA In-Person and Virtual Conference – January 29 – February 1st

Some of the Wisconsin AT Network leadership team will be attending and presenting in Orlando (yeah warm weather!).

Luckily, ATIA also has a virtual option. Here are the details:

• Register for the InPerson Conference – https://www.atia.org/conference/
• The Exhibit Hall is free to explore. You do not need to register to come and see all the new products from assistive technology vendors  https://s3.goeshow.com/atia/orlando/2025/exhibitor_list.cfm
• Register for the Full Virtual Event (over 90 sessions are recorded, 30 sessions are live streamed so that you can ask questions of the presenters) – https://www.atia.org/virtualevent/