endever*: Welcome to AAC Town! Just because we don’t speak doesn’t mean we have nothing to say.
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Bekah: Hello, this is just a listener note. My name is Bekah and I work with Sam and I have been helping Sam and endever* with this podcast over the last few years and today for the first time you will hear my voice on the podcast. And I just wanted listeners to be aware who it was and that you would be hearing me!
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Sam: My mom is one of my favorite people in the whole world. She is an active person and loves tennis, hiking, and skiing. She is an amazing cook, and loves her family and friends. She has always been, and continues to be, a powerful advocate and ally for me. She was my advocate when I needed help to get a new speech therapist so I could get my first device. She has helped with all the things that I needed to allow me to live independently. I really need my mom and I am amazed at all she has done for me! I am excited for you all to hear more about my story from my mom’s perspective.
Lori: That was really sweet, Sam!
Sam: Tell us a little about yourself.
Lori: Well my name’s Lori Vranizan, and I am the mother of Sam Vranizan – and two other children, Nick and Annie, who are older than him. So he’s the third in the family. I was a flight attendant for a career before Sam was born, but when it was my year leave of absence was up after Sam was born, I decided that I should stay home and help with his care. I’m also a ski instructor. And as Sam mentioned, I play a lot of tennis too. I think that’s about it!
endever*: When did you realize Sam was not going to use spoken language to communicate?
Lori: Well, I would say that was, something that took years to really fully understand. Sam was born with cerebral palsy from a birth injury, and you don’t really know how how somebody is going to develop, until they get to a point where they’re not gaining the skills that you normally gain – like sitting, standing, crawling, walking, and communicating. So although we knew he had cerebral palsy, we didn’t really know how severe it would be. But he he did start having early intervention in his first year, which was visits from an early intervention specialist. then he started physical therapy, speech and OT, all before he was one year old.
endever*: How did you communicate with Sam when he was little?
Lori: We started with teaching him yes and no response. That was with a head nod or shake. But also in the early days we used looking up and looking down, but he figured out how to shake his head. And then he progressed to eye gaze to symbols, he had a a tray on his chair that had different symbols – basically yes, no, more, and… more and enough or stop or something like that, right Sam? And then he progressed to a communication board and communication book with which he used his eyes to look at symbols.
Bekah: Sorry just to follow up to that, I’m curious if you… do you remember, kind of, ages when those kinds of things? Like a little, like, when did he start using some those things?
Lori: It’s hard to remember ages, and it was… I think it was hard to know for sure how much Sam was comprehending early on. But I think around three, we got a pretty clear yes and no.
Sam: How did you handle it when you realized how bored I was at school?
Lori: Well, there were different times in your life when you were bored at school! But I think we should start with when you were at Holladay Center. Sam went to preschool at Holladay Center, which was a school that was special for for kids with developmental disabilities. And they kept telling me over and over again that Sam didn’t know his shapes and colors and numbers. And we practiced those a lot at home; and I was certain, Sam, that you knew them! And that they would just keep trying to teach you the same things over and over again if you stayed there. So we pushed hard for you to move to the local school for kindergarten. And by pushing hard I meant when we went to your IEP meeting (have to go from ISP to IEP), we were asking that you could go to, to school at Irvington, where your sister and brother went to school. And there was a lot of… a lot of people in the room that didn’t think you were ready for that. But the regional director, whoever was the head person, she actually came around and said, “I think it would be a good idea”. So that, that was… my feeling was that if you stayed there, they would just continue to try and teach you the same things over and over. If you were in school with typical children, even if you weren’t learning everything that they taught, you would be getting a lot more taught to you. And you would be learning a lot more. So that was, that’s the first time.
Bekah: Lori, can you share with people that maybe don’t know what was the Holladay Center, is the Holladay Center, where Sam first was going to school?
Lori: Holladay Center was a school that was built specially for people especially with physical disabilities. It was a very cool school that’s kind of a round shape with a hallway and classrooms off the side. But even the windows in the the building were at wheelchair height. And it, it served kids from three up until like 3rd or 4th grade I believe. And it was believed that having them in a school of their own would help them progress better. Turns out that it closed a couple years after Sam left… that they they finally determined that kids with disabilities were actually better off in, in their neighborhood schools, around typical children. So it’s no longer there. I think it might be a preschool or something now.
Sam: I have been using assistive technology since I was a kid. I had some bad teachers who didn’t believe in me. When I was 14 there was a speech therapist who gave me a chance and taught me to use my first device. I still smile when I think about her because she helped me be able to speak to the general public. It makes me want to cry when I think about the fact that I had to wait till I was 14 to have a communication device. I think the latest student should get a devices is seven years old. I think the younger the better! Can you talk about some of the difficulties of my experience with speech therapists, and then how it changed with Mira?
Lori: Boy, that’s a whole conversation in itself right there! Let me try and break it apart. Sam had a lot of very good speech pathologists that worked with him with learning icons, and symbols, and eye gaze. In grade school you started to try and access a computer. I think there were two things that went on. One is, your your hands weren’t able to access a computer, so you tried many different switches, and it was really really difficult. And the other thing is that you didn’t have a communication device, and the thought was, “we don’t need to give you a communication device because you have a computer, and until you can master the computer, you wouldn’t need a device”. It wasn’t until much later when it felt… I think this goes back to when you said, you talked about getting bored – you got bored, frustrated, and uncooperative in participating in all your, your language stuff or working with speech pathologists. And, and so I think there were years where you really didn’t move forward much, because you you didn’t see any use in it, or you didn’t think it was worth it. So that’s when you just happened to be up at Shriners Hospital working with… I think her name was Christy, on a on using a power chair. And she introduced you to Mira, a speech pathologist up there. And you two hit it off! And she challenged you and said that she would work with you if you were interested. And when you started to see her, you still you still had a little bit of resistance, but she she thought that you could improve a lot, and you should be rewarded if you worked really hard. And so she offered that if you worked really hard, you should go to camp the next summer, and that she would go with you. I think, I think what made things work so well with her was that she really believed you understood what you needed to, to do. And she was she was very eager to encourage you. One of the big problems that you had was that you didn’t like to be wrong, so you resisted if you weren’t absolutely sure that you knew the answers or you knew what to do. And I think she saw through that.
Sam: Were you excited for me to go to Bridge Camp? What was it like when I came back?
Lori: Sam, I was very excited for you to go to Bridge Camp! I had heard about communication camps, one particularly in Colorado, that I had always thought would be great for you to go to, but we never had done it. And so when Mira encouraged you, I was very excited. Bridge Camp is, is a carryover from the Bridge School down in California where kids attend school for AAC users, or who need more technology than they would get in normal school. And they do a Bridge, a camp in the summer for the kids that that do go to Bridge School, but also for older kids. And they’ll allow people outside the district to come. So you went to that! You were required to rent a communication device. And you were, I believe, 16 – and you never had gotten a communication device! You rented one, went to camp, had a lovely time, and came home very very excited about having your own communication device, and wanted to get one right away. When we communicated that to the speech pathologist that worked with you in the school, she was pretty pessimistic, and wanted to… wanted you to try other devices, and didn’t think you were ready, et cetera. So we just went ahead and and went through with the purchase through insurance. But then when you got to school in the fall, she wasn’t… she wasn’t supporting you very well. In other words, finding ways to integrate your communication device into your classroom activities, and and help the teachers know how to work with you with the communication device. So at that point we had to go to the supervisor, and make a complaint that this wasn’t working and that the teachers and staff at school needed training, and that we needed something in your IEP that said that that it would be used in school. And we were successful, and that was the beginning of when you started using it all the time.
Bekah: All right Laurie, I actually don’t know the answer to this – you know I’ve known Sam for five years, he’s always been very skilled in the way that he uses his communication device to be able to communicate his needs. But at 14, when he did not have access to a device and then suddenly got it, I’m curious how long it took for you and Sam to be able to start seeing Sam be able to use the device in a way that he was able to communicate with it.
Lori: So Sam had had learned a lot about icons… He hadn’t learned a lot of the Minspeak or, or icons that are specific to, to PRC device. But he picked that up pretty quickly. I think I think what always was in Sam’s way was that he could learn things, it’s just his access or his ability to tell people what he knew kind of slowed down the process. So actually getting switches that worked properly and getting his head control… those things were the the hard things. I had… I would say, that year that he got his device, he was in gospel choir. And he came home one day it was in December and he told me there was something going on at school that night. And I said I don’t know about anything, but he persisted. And I can’t remember how he was telling me that, but I went on to the school website, and sure enough there was a choir performance that night. And I asked him what if it that’s what it was, and he said yes. And I go, well, I we I can take you to the performance… And then he said, with his talker, he said “red shirt”. And that blew me away. So that was when it was like, oh wow, he – you know – he can totally use this! And, you know… I of all people know him well, and I didn’t always know how much he could, he took in at school. But I took him to the performance. They had never thought of having him on stage with the choir, so we sat and watched it – and all the kids in gospel choir were in red shirts. Remember that?
Bekah: Sam, do you remember that? Oh Sam is nodding his head “yes” that he does remember that.
endever*: That’s so great that you were able to do that kind of school advocacy around this speech therapist who wasn’t presuming Sam’s competence. I’m curious, would you say you always knew Sam was trying to communicate with you? Or did you have some other “aha” moments?
Lori: There, there are so many things that come to my mind when you say that… Yes. Sam was always trying to communicate, and I have a few stories. I think one of the the earlier ones was when his cousin was babysitting him, and she, she had him in the kitchen, and she was looking for a bowl in one of the cupboards. And she opened all the cupboards in the kitchen, and, because she couldn’t find the bowl. And she turned around and looked at Sam, and she realized that he had been looking at the cabinet that had the bowl in it the whole time, and was laughing at her for not being able to find it. The other one, that was… we went down to, I think it’s called Six Flags, amusement park down in California. And Sam, you were like three or four years old, and we took you on the lager ride. And I was holding you in my arms, you right in front of me on the log, when we went over the waterfall. I thought you had a heart attack, cause you jumped so much! And I, I felt really terrible that I had taken you on the ride. And we we got off and we were walking away, and Nick and Annie were asking you, “did you like it? Did you like it?!” And all of a sudden you had that big “yes!” And they asked you if you wanted to go again, and you said yes. I’m like, wow! And then in, in addition to that, that question was always on my mind, is you know, how do I know how much Sam understands? And we went to an educational specialist up at OHSU when you were about six years old. And I was asking him, “what should I expect?” or “how do I know that Sam’s understanding?”… especially because I feel like in education, a lot of teachers didn’t have high expectations. And he told me that one way to have an idea is to watch Sam to see if he understands jokes – see if he reacts to jokes. And another one is to see if he can engage in like, watching sports, and scoring, and all that. And I’m like, oh wow he’s already doing all that! So that, that was real helpful.
endever*: What is the most surprising thing Sam has told you?
Lori: Well, I’ve already mentioned a couple other things, previously. But there was, there was a time when, he called, he’s actually, he called one of his teachers a witch. Or he, he called her a witch to me. And I mean remember there was somebody else, Sam, you called ghost – and I like, I think he was offended, but I understood what you were talking about – kind of, he slipped in and out of the classroom. And you know, he’d just show up. Those, those things kind of blow me away. You actually, you said something last… two months ago?… that surprised me. I didn’t know he knew the phrase or the context or anything, and he said “last straw”. So, so I’m always being amazed with what Sam comes up.
Sam: What is your coolest story related to AAC?
Lori: When Sam was in middle school, the school he was at wasn’t working very well, nor was the aide that had been assigned to him. And so after Christmas break, he was going to switch to a new school and get a new classroom aide. And I thought it would be really nice for him to get to know the aide a little bit during Christmas break. So we hired him to work with Sam a little bit over the break. And Sam needed to do some Christmas shopping. He had just met Sam and gotten a little, you know, introduction, et cetera. And I said, “why didn’t you take him to Lloyd Center, and take, and help Sam get some Christmas presents for his siblings, his sister and brother?” And they came home with a large bag of charcoal! From the grocery store, of all things, not Lloyd Center! And it was for his brother, because he thought that his brother should get a bag of coal for Christmas. And I was just astounded that that message got conveyed to the aide, and he was able to execute what Sam wanted to do. There was other things that I found really interesting. A lot of times people forget how much Sam understands, and they would talk – teachers, aides, whatever – they would talk to each other around Sam, without thinking that he was understanding. And he would come home and tell me things, or be very upset about things that he had heard, mostly personal things about them. And one, one of those stories I think had to do with Todd. He had gotten a parking ticket, and he had to go to the courthouse. But Sam didn’t understand the whole bit about it, and he thought that Todd was going to be arrested. And all, you know, all sorts of things that went through Sam’s mind, that he came home and told me. And it was it was a reminder – I was able then to remind them at school that, hey you guys, you shouldn’t be talking about personal life – I mean, if you start talking about a fight with your spouse or whatever, he takes it in and and gets pretty upset about those things. So that was interesting.
endever*: You’ve spoken to this a bit, but how have you seen options for AAC grown shift over time?
Lori: Yeah, it’s changed a lot since Sam started! Before he had a device I, you know, I really felt strongly that PRC was the right choice for him. But at the time they did not have a dynamic display device. So everything had to do with hitting buttons, and combinations of buttons, that there were just pictures of icons. But because it wasn’t dynamic, you had to learn combinations, and it was very complicated. When they came out with a device that was dynamic is about the time that Sam started. But now – not even now – like, how many years long how long ago did iPad come out – all of a sudden when iPads came out, there was, they were able to supply small children in school with iPads! And let them use fingers for icons and communication. So I mean, to me it just exploded at that point in time. The day will come when there’ll be implants in the brain, so Sam can, could actually control a device without having to worry about how to access it. So it’s come a long way, and I’m sure there’s lots more to come.
endever*: My friend is actually researching that kind of brain computer interface, it’s super cool.
Lori: Yeah, it is cool! Sam actually was part of the brain computer – is that what it was called? – study like 10 years ago? They came out and they put a brain, a pad on it with electrodes. But he – all of his movement prevented him from from continuing. They said that he’s the person that they want it to work for, but they had to figure out how to, to keep all that extra brain wave movement from… from getting in the way.
Sam: Do you have any advice for other parents?
Lori: Advice for parents would be to learn a lot about what… what a child needs. And do a lot of research, and push hard for their needs to be met. You’re the best advocate for your child. And to trust your child! I think that’s the most important thing.
endever*: What would you say is the biggest lesson you would have learned from AAC users?
Lori: I think the most important thing that I’ve learned is to listen carefully. Not just to what people say, but what they mean. And I think that carries over into communication with everybody, not just AAC users. Often we just kind of gloss over, and think we hear what people are saying.
Sam: Do you have anything else you would like to share with us or add to the conversation?
Lori: You guys did an amazing job of putting together these questions! I can tell it took a lot of a lot of work, because you really had a good idea of, Sam, what what you wanted to get out of the interview. You two are amazing! And it’s really been a pleasure working with you and answering the questions. Thank you.
endever*: Lori, thank you very much for talking to us today! It’s been so fun to hear your memories of Sam. And listeners, thank you so much for tuning in. If you have any feedback or suggestions for us, you can always e-mail us at AACTownPodcast@gmail.com. We’ll see you next time on AAC Town!
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