ATU301 – Rett University with Susan Norwell & Roger Brooks

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Your weekly dose of information that keeps you up to date on the latest developments in the field of technology designed to assist people with disabilities and special needs.

Susan Norwell, Co-Founder of Rett University & Roger Brooks, Director of Rett U | www.rettuniversity.orghttp://rettuniversity.org/one-page-communication-sheet/
App: News-o-matic | www.BridgingApps.org
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ROGER BROOKS:  Hi, this is Roger Brooks, and I’m the COO of girl power to cure and a director of Rett University.

SUSAN NORWELL:  My name is Susan Norwell and I am the cofounder of Rett University, and this is your Assistance Technology Update.

WADE WINGLER:  Hi, this is Wade Wingler with the INDATA Project at Easter Seals crossroads in Indiana with your Assistive Technology Update, a weekly dose of information that keeps you up-to-date on the latest developments in the field of technology designed to assist people with disabilities and special needs.

Welcome to episode number 301 of Assistive Technology Update. It’s scheduled to be released on March 3, 2017.

Today we have an app for the folks at BridgingApps called News-O-Matic, and then I spend an extended amount of time with Susan Norwell and Roger Brooks. Susan is the well-known founder of Rett University and Roger is the director of Rett University, where they are focusing on alternative and augmentative communication for mostly young girls who have Rett syndrome. Fascinating conversation, really opened my eyes about a lot of the things going on with assistive technology in the world of kids who have Rett syndrome.

We hope you’ll check out our website at www.eastersealstech.com, send us a note on Twitter at INDATA Project, or call our listener line. We love to hear feedback, questions, and ideas. That number is 317-721-7124.

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Like this show?  To try our other weekly program, Accessibility Minute, at AccessibilityMinute.com or wherever you get your podcast.

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Each week, one of our partners tells us what’s happening in the everyday world of apps, so here’s an app worth mentioning.

AMY BARRY:  This is Amy Barry with BridgingApps, and this is an app worth mentioning. Today I am sharing an app called News-O-Matic. Great for typically developing learners, early readers, struggling readers, and ELL students, News-O-Matic is a fun, engaging, and accurate digital news source designed for kids. The magazine-like app contains a interactive activities and videos. Each day, News-O-Matic features five dynamic news articles available at three reading levels; rich and detailed images, videos, and illustrations; informative maps relating the user to every story; it also features a newsroom for drawing or asking questions about the news. There are puzzles, games, fun facts, and many other elements for discovery. We also like the audio support for challenging vocabulary and full stories to read. News-O-Matic are written by staff of journalists including educational experts to ensure age-appropriate content. Recommended by teachers and loved by kids, News-O-Matic is a great way to explore and connect with the world. News-O-Matic is free to download at the iTunes Store and the Google Play Store and is compatible with both iOS and android devices. For more information on this app announces like it, visit BridgingApps.org.

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WADE WINGLER:  Not long ago, I was talking with one of the students I’m teaching in a graduate course about assistive technology. That student said to me, “My daughter has Rett Syndrome and had an amazing experience when it came to augmentative and alternative communication. You know about Susan Norwell and Rett University, right?” I said, “I don’t know about that.” My student said, “Well, she changed our lives and you need to talk to her.” With that kind of an introduction to Susan Norwell, I thought I need to reach out to these folks and see what’s going on at Rett University. The more I dug around about it, the more I was fascinated with what’s going on. I wanted to bring the folks from Rett University to you guys so that you can be fascinated and learn a little bit about was going on. I am so excited to be joined by Susan Norwell, who is a cofounder of Rett University, and also Roger Brooks who serves as the director of Rett University. You still on the line?

SUSAN NORWELL:  Yes we are.

ROGER BROOKS:  I’m here.

WADE WINGLER:  Thank you so much for taking time out of your busy day. I know we’ve been in meetings and took time to talk with me today. I am flattered and thrilled that you did that. Susan, I want to start with you, Roger I’ll have the same question. Tell me a little bit about how and why you became interested in Rett Syndrome and how that became so important to with how you are working.

SUSAN NORWELL:  About 41 years ago, I went into special education. After about 10 years, I went into private practice and all the kids I was working with were severe kids with autism. I had a young lady named Marissa who I was working with, and she was a little bit different than my kids with autism, a little more social, but I didn’t think anything of it. I started working with her on communication, beginning literacy, and she was really picking things up. She used her eyes more than her hands which was a lot like my kids with autism. But what happened to her is at five—so I started with her at three—she got the chickenpox, and at that point she totally regressed. When she came out of the chickenpox episode, she was wringing her hands in a classic Rett syndrome fashion. I realized that she did not have autism and was diagnosed with Rett syndrome. But the interesting piece for me is even though the prevailing sentiment at that time was that Rett was a cognitive disorder, severely impacted by cognition, this little girl remembered everything I had taught her, remembered all of her literacy. She is 30 years old right now who still reads, who still can write – not with a principal with assistive technology, and is still learning and growing. That was my “Aha!” moment that said never put on any kinds of lenses that block or confine or dictate what you do with a child or adult, that you keep an open mind, you presume competence, and you always look for what they can do in figure out how they can do more. That was a changing, pivotal moment in my career working with her.

WADE WINGLER:  Roger, same question for you.

ROGER BROOKS:  In 2008, we received a diagnosis of Rett syndrome for our daughter Juliana. After we went to the Internet and saw all horrible stuff associated with Rett syndrome, my wife and I made a decision – I remember it vividly – that we were going to fight on her behalf and really work hard to make sure that she lived a quality life. It wasn’t until she started school when we thought that we would be able to turn her over to the school and life would be great, and they would understand how to do what they needed to do for her to have a good education. We started to realize that wasn’t necessarily the case. That really was the beginning of us seeing the opportunity to help other people understand what Juliana was capable of doing. She had communicated to us through blinking and was very encouraged about what the possibilities were for her if she’s given the appropriate access to technology and to tools and resources that help her to communicate. Lo and behold, she’s 10 years old today. She’s in fourth grade in a general Ed class. She is reading, writing, communicating using an eye gaze to the DynaVox device. We still have battles that Rett syndrome throws our way, but she is a happy, healthy, 10-year-old girl. That’s really how it all began.

WADE WINGLER:  That’s great. Roger, you hit on it just a little bit – and I think I have some understanding about what Rett syndrome is and what it does and the challenges that are faced by people, and mostly girls as I understand. For those in the audience who might not be as familiar, can we talk a little bit about what kind of challenges Rett syndrome brings about you that we will better understand?

SUSAN NORWELL:  If you want to put it into categories people understand, it would be as if you took autism, CP, Tourette’s, muscular dystrophy, and high anxiety disorder, respiratory distress, seizure disorder. You throw all that and one kid. There is unfortunately a huge sense both in the therapy community and education system that if a person cannot show you on command what they know, it means they don’t know it. I think the girls’ key issue is their apraxia. They have thoughts; they have things they want to do; but they cannot communicate from the brain to their body. There is a broken link in terms of being able to tell their bodies what their brain is thinking. When you look at the complexity of these girls, and you look at the motor issue that is just so pervasive, and you look at this apraxia quality, a lot of people give up, don’t find a way in, and because of that the girls close in on themselves and must feel badly about themselves. It’s harder people don’t believe in you to then work so hard to try and get something out.

That is our mission at Rett University. When I tell my grad students, assistive technology is anything at all that helps a person do something they can’t ordinarily do. Assistive technology is huge. It’s not just Juliana’s device. As the index cards we space out on her desk when a teacher is doing an instructional lesson so that she can I gaze to the part where she can contribute to the class discussion. It’s as widespread as that. Rett demanded of me and demands of everybody working with the girls to be the best teacher, best speech therapist, best OT, best PT, best parent that you can possibly be, because they are in there and it is up to us to get them out.

WADE WINGLER:  It sounds like, as we think about assistive technology, that it might fit in a lot of different ways when we’re talking about a child with Rett syndrome or a person with Rett syndrome. Talk to me about that. Augmentative communication comes to my right away. Tell me about the different ways AT fits in.

SUSAN NORWELL:  Personally I think the first thing is communication. I think that once that door gets open up for the girls – now I’ve seen over 450 girls at this point in my career, and three boys. When I go around the world and I see 47-year-olds, 53-year-olds, and 18-month-olds and 2-year-olds, that big of spread in terms of the ages be able to communicate to their parents, I love you, be able to ask for something to be turned down because it’s too loud. Be able to make a joke. Be able to make a snarky comment, to tattle on their brother. It is this phenomenal turn of events where now the child knows or adult knows I’ve just impacted you. But I will tell you the number of times I see parents’ jaws drop, educators’ jaws drop, because once that person, little person or big person, communicate something meaningful, people can no longer say they don’t know what’s going on.

To me, we don’t start soon enough. My goal would be on diagnosis they get an eye gaze device. But before that, anytime – we have a one page language guidelines that you can have a neurologist have in his office, and when he is first talking with a parent about the fact that a child is not talking, somebody needs to be reading their eyes, understanding what they’re trying to say, mapping language onto symbols, setting things up around the house so this child says I may not be able to talk with my mouse like you, but I’m going to have a way to communicate. That’s our mission at Rett U, and if it weren’t for Roger, that one page would’ve never gotten done. We have a one page now that will go into doctors offices that can be translated and go all around the world to help families and help educators and help therapist say, this kid may not be able to communicate, but here’s a place I can start.

WADE WINGLER:  As people are working on increasing reading and writing and communication skills with somebody who has Rett, what are some of the things that are primary to keep in mind in the process?

ROGER BROOKS:  I can only speak frankly about Juliana’s experience. I remember the first time she used her device to tell us that she had a headache. I think really understanding that our girls love literacy, and weaving reading, all that you do, everywhere you go, taking the opportunity to point those things out. It is, in my opinion—and I’m not a speech therapist or educator – they are learning a new language, and so are the families, so are the teachers, so are the speech therapist. When you can dial in to how they are communicating, we’ve personally seen Juliana’s personal affect improve because she is able to indicate what she needs, what she wants, what she feels.

The other important thing is acknowledging that our girls are learning receptively all the time. The more that we can put them into situations they are hearing age-appropriate language, communication, and frankly instruction, the better they’re going to be. It’s really impacted her life dramatically.

SUSAN NORWELL:  You were talking about writing it, Wade. I use that as an example. What does a neurotypical 12- to 18-month-old do?  They pick up a crayon and the scribble on everything. What do our girls do?  They look at the crayon. They can’t pick it up and can’t scribble. So what we’ve developed at Rett University is an ABC flipbook. It’s a book that’s got the ABCs in order, ABCD, next page, EFGH, IJKLM, next page, you get it. From very early on we are working with these 18-month-old to 2-year-old, we’re just playing with the flipbook. Do you want an A?  Yes or no. Do you want a B?  Yes or no. They say yes, we just write it down. They are scribbling. They may write a millions A’s. They don’t even know it’s an A. neurotypical kids don’t know it’s an A. they are just trying to do what we are doing.

We’ve developed with a big think tank including someone with Rett syndrome. I had her look at it. She’s fully literate so she can type and tell me what the problems were with it. Like we had the space bar next to the clear all and she’s like, really, Susan, that was stupid because I’ve been clearing things all day I didn’t want to clear. I’m not an eye gaze user, so to me it’s just one over. When you’re using your eyes, it’s a whole different story. We have this keyboard that can go on a Tobii. Now kids are scribbling away. Yesterday one of our four years old – this is unbelievable. I just love her. One of our four years olds that I consulted on her case, somebody bent down and talk to her at preschool and said, how are you doing?  What are you going to do later?  She took her keyboard, and with word prediction spelled — the teacher asked what she is doing for lunch. She spelled “Go out”. Go out for lunch. Do you think her mom took her out for lunch?  I bet she did. Now we’ve got a four-year-old who has scribbled, played with letters and sounds, then all the things that neurotypical kids do, adapted, to her being able to write out “go out”. That isn’t going to happen unless we are really purposeful about how we take everything other kids are doing and figure out how our kids are going to do it. That’s what I love about AT.

My dad was an engineer. I’m so grateful that he had that kind of brain because for me it’s like how do I jury rigged this thing to make it work for my kid? Isn’t that AT?  You have to be a jury rigger. You’re always trying to figure out what’s the thing I can do that’s going to make it easier for them to do this. I’ve got kids doing decoding programs. I love making words. Juliana is a great writer. She already has the title of the book she’s going to write. These are kids that you first see them, people are going wait a minute, they can’t do this stuff. I think what’s exciting about Rett University is we are leading the way. Rett University has become more than just about Rett syndrome. We have families who are breaking their CP kids to our workshop and kids with autism. They are looking at what we are doing and saying this will work. Yes it will. Adapt the heck out of it and go.

WADE WINGLER:  That makes total sense. We fainted around about this a little bit and are running a bit short on time with the interview. Give me the rundown of some of the services that are available at Rett University. What is Rett University and what kind of services are there and available and how are they delivered?

SUSAN NORWELL:  Go ahead, Roger. You’re good at this.

ROGER BROOKS:  We initially started off with launching an educational online platform and said, could we create coursework that could be consumed by people all over the world. We have 12 online courses that focus on a number of different topics including communication, literacy, what you do when you first get an eye gaze device. Where does it go and how do I implement it into life. That has since transformed. We had such an overwhelming trance fonts, we started hosting workshops, what we call Rett University live sessions where we are recording with a group or organization and are breaking folks together from all different disciplines. I think this is what makes us a little bit different. There definitely is a need for professional training, but what we’ve seen is when we mix that audience up and have SLP, special ed educators, spedaids (phonetic) and parent all in the same room. The conversation, experience, and discussion is somewhat richer because everyone is having and learning and understanding of each other’s perspective. We have training and workshops. Last summer we offered our Rett University coaches. These are folks that we’ve identified from all over the globe that are doing great work in their own communities. What we’ve done is provided under the layer of support through one-on-one coaching. They can remote dial into devices and help provide recommendations for page sets and give context and reasons why we make those recommendations. It’s all anchored into this belief system where we believe if we give the tools and training to empower all these people that are supporting our girls what they need, our goals will be successful. There is no doubt in our mind that that will happen.

SUSAN NORWELL:  We had this amazing workshop experience that Roger and I put our heads together. When we put our heads together, things explode. We did this workshop that was very hands-on oriented. I taught a concept, I modeled the concept, gave them a task, sent them off to do it. We had our coaches all there behind people, coaching them, kind of like the Apple way of doing things. Don’t touch the device, don’t touch the flipbook, just coach from behind. What we found after these workshops is that people didn’t just post what they learned. They posted videos of what they are doing with their kids. That was huge. Parents writing with their kids using the flipbooks. Parents sitting down doing a cooking activity, just to chatting. Just reading a book and using our four grid book that we created so they have something on the fly they can use really fast. Just these unbelievable applications of what we were teaching. That’s the piece I think that AT has always suffered with, particularly AAC, is people get devices, get stuff. Sometimes that stuff ends up on the shelf because the application of, well, how do I do it?  When do I do it?  How do I use it?  Has not been funded well, people haven’t figured out how to do that part well. That’s something that we are taking the bull by the horns and saying it’s not just the device. Is really what you do with the device. Rogers big phrase is we have to teach them less about editing and designing. We have to teach them how to use the thing from the get go. Which is true. It’s what birthed those workshops.

WADE WINGLER:  That makes a ton of sense. We don’t have time to get into all the details about what’s available with Rett University, but give me a quick idea about what kind of costs are associated with some of the programs.

SUSAN NORWELL:  Our address is www.Rett-U.org. the courses run anywhere from $25-$145. Basically $25 an hour for instruction. If you have a four hour course like my guided reading course, it might be $100. I don’t think it’s an extremely cost when you start to look at online training. I’ve taken online training for one hour and spent $100. One of my goals early on when I was conceiving this as I felt badly that only people who had money or the wherewithal could have become and help them with their child. What I really wanted to do – me and Bernie Sanders could be really good friends. What I wanted to do was be able to say to parents, I may not be able to come, you may not be able to afford that piece, but you can listen to me for four hours. In fact, you can own that course for a year and listen to it over and over again until you understand it. This way schools have been using our courses for professional development. Parents can use it to help their professionals. They can give them to the schools. We’ve had a lot of success. I just found out this morning we are in 18 countries. People in 18 countries have taken our courses. If we think in America things are tough for our AAC users and AT users, you just have to go to other places where I am walking in and they say our girls don’t even go to schools. They are in daycare’s all day. We are changing that. We are rattling cages. We were just in the Netherlands and girls are starting to go to school. They are going to be educated, not just cared for because of our Rett Live. That’s why I do what I do. I want to make change. I don’t want to make little change. I want to make big change worldwide for kids and adults who are the ones that are typically forgotten.

WADE WINGLER:  I know that people listening to that are going to want to learn more about what you’re doing and perhaps take a course. Give me that web address and contact information again.

SUSAN NORWELL: It’s www.Rett-U.org. My email is susannorwell@rettu.org. I answer emails. I’d love to hear from people.

WADE WINGLER:  Excellent. Susan Norwell is the cofounder of Rett University, and Roger Brooks serves as the director of Rett University. Thank you so much for being with us today.

SUSAN NORWELL:  You are so welcome.

ROGER BROOKS:  Thanks so much, Wade.

SUSAN NORWELL:  Thanks for having us.

WADE WINGLER:  Do you have a question about assistive technology? Do you have a suggestion for someone we should interview on Assistive Technology Update? Call our listener line at 317-721-7124, shoot us a note on Twitter @INDATAProject, or check us out on Facebook. Looking for a transcript or show notes from today’s show? Head on over to www.EasterSealstech.com. Assistive Technology Update is a proud member of the Accessibility Channel. Find more shows like this plus much more over at AccessibilityChannel.com. That was your Assistance Technology Update. I’m Wade Wingler with the INDATA Project at Easter Seals Crossroads in Indiana.

***Transcript provided by TJ Cortopassi.  For transcription requests and inquiries, contact tjcortopassi@gmail.com***