CVI Experts: Dr. Sarah Blackstone and Dr. Christine Roman-Lantzy

Transcript: 

[MUSIC PLAYING]

Hey, this is Valerie. Welcome to Perkins eLearning to Go. We have an exciting podcast today. Last week, we had two leaders in the field of speech pathology and cortical visual impairment with us for a webinar. After the webinar with Perkins eLearning, they were kind enough to stick around and answer some questions and chat with us. In this podcast, you will hear from Dr. Sarah Blackstone and Dr. Christine Roman-Lantzy as they discuss how they came together to work at The Bridge School.

But first, let me tell you a little bit about our guests. Dr. Sarah Blackstone is a past president and Fellow of the International Society for Argumentative and Alternative Communication, otherwise known as ISAAC, and a founder and board member of its US Chapter. Dr. Blackstone is a contributing author to the Cortical Visual Impairment-- Advanced Principles, where she addresses the AAC needs of children with cortical visual impairment.

Dr. Christine Roman-Lantzy is the director of the Pediatric View Program at the Western Pennsylvania Hospital in Pittsburgh. She's also a former project leader of the CVI project at the American Printing House for the Blind in Louisville. She's the author of the Cortical Visual Impairment-- an Approach to Assessment and Intervention as well as the recently released Cortical Visual Impairment-- Advanced Principles. So without further delay, here is our discussion.

The first question is, how did the two of you come together around this area of communication in vision for your students with CVI?

I'll start, I guess, Sarah. So we, Sarah Blackstone and I, had kind of an accidental meeting, at least in my mind, that there was an opportunity for me to do a co-presentation with a speech therapist in Pittsburgh. And I honestly didn't take the presentation terribly seriously, because it was a speech conference-- it was a conference for people who work in speech and AAC maybe? See how much I know? And these are not my people, so I didn't really get too worked up about it.

And so I went and co-presented. And I was told that there was a very important person in the audience. And I had the opportunity to meet this very important person afterwards. And that was Sarah Blackstone, who turned out to be such a gift. Because she completely changed my point of view about the concept of working in isolation of others. She opened up a world to me of knowledge that I didn't even know I needed and has improved my ability to serve families and children with CVI tremendously.

Wow.

So we met at a conference. I think maybe Sarah would tell this story a little bit differently.

I would.

[LAUGHTER]

I do agree we met at a conference. I was aware, because I'm old, and I've been around a long time, that there are a lot of kids who rely on AAC, a lot of people who rely on AAC, who have visual difficulties. That was in our literature. And certainly, my clinical experience taught me that. And every once in a while, I'd hear the term cerebral or cortical visual impairment.

And it was very-- and I worked very closely with a great vision specialist in Berkeley at that time. But none of us understood-- and the recommendations were very ocular related that came from the evaluation center. And being on The Bridge School, I was aware of children there that-- about 60% of the kids there, 60% to 70%, have CVI.

Wow.

So whatever was happening at The Bridge School, wasn't working. It just wasn't working. And it didn't reflect what-- the recommendations didn't reflect what the staff saw, observed, and they didn't work. And then the other part of this was my connection with Gabby in Mexico City. And that was a fairly new program. And she really didn't know what to do. And of course, I didn't either.

So Dr. Roman's willingness to talk with me and willingness to consult with both of those programs has changed, profoundly changed, the way I think we can approach children. And it has made a-- I know we're going to show in our research study, we're going to document the outcomes that we see and know are there. And it's her leadership that has allowed that to happen, her willingness, her passion.

Sarah, I think the two of us are really-- we're kind of like two-- we're parallel people who came from two different approaches. But actually, we're tripping all over each other our whole lives. You lived in Pittsburgh for a while. And I mean, we have so many near misses. And finally, the stars aligned, and we collided.

And I think it was meant to be. Because I think we both share a passion for children with complex needs, we share a deep respect for their families, we care about learning, we're hands on people. And it was just the right-- it was just meant to happen. I think it's a really special collaboration.

And how long ago was that, that you guys met?

Well, I was trying to figure out when that conference was. I think it was 2010 maybe. What do you think, Christine?

That could be right. I have no idea.

It's been almost a decade.

Oh, 2010, you're right. OK. So you certainly can tell you guys have a good relationship just by the way you guys joke around and speak with each other. And it sounds like you've inspired each other along the way.

No question.

Yeah, there's no question. I like her OK.

Yeah, that's right.

[LAUGHTER]

She'll do.

I adore this woman. I want to be--

I know, I know.

--this woman.

This is my favorite-- just about--

I just want to be her.

--my favorite person.

It certainly makes the webinar fun, too, because it shines through during the webinar.

Does it? That's good. I'm glad.

So what are the primary challenges for educators when looking at communication vision for students with CVI?

Well, Christine, you take that from a different perspective. I'm going to take that from a perspective of a school or a school that serves children who have severe speech and visual impairments and CVI that are enrolled in an educational program. And this is a transition program. It is not a forever program.

So the goal is to bring children in at the age of about three and to provide them with the kinds of support and accommodations they need to be able to communicate effectively, participate in an academic curriculum of one sort or another, and develop language, learning literacy skills. So they enter, and they exit, and they go back to their school districts.

So what is the challenge in education is that, in California, there's a curriculum that has to be followed. So it's all about assessing and interventions that require accommodations, modifications to materials, modifications for methods and strategies that provide access to that child, to language, to communication, to participation, to self-determination, to mobility, to vision. And that was a huge missing piece. And it's made all the difference.

So, Valerie, the question was what-- ask me the question again.

What are the primary challenges for educators in looking at communication and vision for students with CVI?

I think it's that they don't talk. They don't talk to each other. It's the thing that we showed in the webinar. I mean, I'm a great example. I always sort of fancied myself as a really devoted educator. And I just totally deferred all things about speech, language, communication to that specialist. And that was a very wrong thing to do. And I assume it happens regularly.

And so I think the real challenge is understanding that we have a major role in each other's worlds and in the roles of educating the child. So, like I said, I didn't even know what CCN meant. I thought it was some kind of community college. I didn't know.

[LAUGHS]

And it just shows the fundamental gap between specialists. And I think that's also reflected in our training programs, that we really don't have time in training programs, nor do we make the effort, I think, to talk about the importance of team-- we're supposed to just be a team when we land there, but we're not.

So more knowledge sharing would help.

For sure. More knowledge sharing, and I think just an awareness of the critical nature of what Sarah just said. Having one piece left out, like vision, resulted in the child not learning at the level they should. For me, not knowing how important selecting the right kind of language is.

As I mentioned before, salient feature language, I talk about this all the time now. It's such a huge part of my work now. And I never even thought about the fact that kids with CVI weren't able to really recognize or interpret novel information, in large part because I wasn't mindful enough about the words I was using. Boy, go figure. That was just critical.

In hindsight, it's almost a small thing but a huge impact once you knew.

Oh, it's everything.

There's a paradigm that I think is really important, which is you don't know what you don't know. And I think that that's where too many-- people who are working with children who have multiple needs and challenges, they don't know what they don't know about the whole child. And then you know what you don't know. And that's a little testy, because it's not a comfortable position to be in.

On the other hand, I think we have a lot of people who are now knowing what they don't know. And they're trying to leap over a gap. But it's hard to talk with one another, because they have ways of seeing things that are through observational windows that the person they're talking to doesn't share. So it's trying to fit a square peg in a round hole instead of just opening up and trying to understand this child, not come up with the answers before you have some notion about who this child is.

So I had this big aha moment when I first started working with Sarah. And it was first through this project in Mexico City with CATIC. The next thing-- before I was invited to actually come into The Bridge School proper, the invitation was come to the conference, come to AAC by the Bay, and just sit and listen. And I thought, well, that seems like a waste of time. Shouldn't I just get in there and do stuff?

Boy, was that important, because it just set me so far back. I remember taking pages and pages and pages of notes thinking I don't know this, I don't know that. Who knows that? How did they know that? Who are these players? Shouldn't I know them? And it changed-- it was that moment, Sarah, when I began to know what I didn't know. It was critical.

I think our retreat was an effort to get to the third stage, which is to know what we know.

Yes, yes. So then that next step was Sarah and I decided to get together-- when she said to me, we don't know this, we don't know this, meaning the people in her field don't know this CVI stuff, this vision stuff from my perspective, and so Sarah thought it would be a good idea for us to get together and start talking about what we should do. So she called me and said, let's get together in February. And I can either come to Pittsburgh, Sarah said, or you can come to Big Sur. Click. I was on the phone calling the airline right then.

That's a hard decision in the winner.

Very hard.

[LAUGHTER]

Very hard. And so this was sort of our famous launchpad where we spent three days-- it was like our Woodstock. We spent three days together. And we drank a little bit of wine, and we had these moments of brilliance. And we walked-- Sarah took me to some just breathtakingly beautiful places along the ocean. And we did a lot of hard work.

And it was really special, I mean, the fact that we could just really get these thoughts out. We literally would have these big posters. And we wrote on those giant Post-It notes and put the concepts that we were both thinking together, trying to fuse what we both knew into something that would help bridge a gap, really.

So it's like a knowledge boot camp with wine.

That's right.

It was definitely a boot camp. It was. We worked very hard.

We did. We did work hard.

[LAUGHTER]

You brought up The Bridge School. And for people who don't know what The Bridge School is, could you elaborate on their mission and some history about The Bridge School?

OK.

[LAUGHS]

Vicki's going to kill me, because I'm probably going to get it wrong. But The Bridge School was founded in 1987 by Pegi Young and another parent. And it has been supported since that time by Bridge School Concerts that have been led by Neil Young until very recently. And the mission of The Bridge School is to address the needs of children who have severe speech and physical impairments and to prepare them to become active learners, communicators, develop language, and participate.

And over the years, Pegi Young has served as chair of the board. And I've been on the board for a long time. The students that are served are now between the ages of three and 12. They come for a period of time, and then they transition back to their home school districts with support from a transition program. And there's also an outreach program.

So there's a school and an outreach program and a transition program. There's also a Teacher-in-Residence program as part of the outreach program. And I think there's been teachers from all continents, except for that cold one, in Antarctica, so far. And they've formed another part of the community. So it's an internationally-- it has international reach.

The children who attend are unable to produce intelligible speech. They have physical impairments. So most of them-- very few of them walk, and very few of them have complete use of their upper extremities. Although, each one is different, their etiologies are different. The purpose of the school, early on, was because-- and I just learned this actually. Pegi and Neil were thinking they were going to get their son, their preschooler Ben, into a program. And she learned that the program was no longer going to operate or accept children.

So she comes back to the parking lot, and she's in tears. And another member of the board is sitting there, happens to be Neil's agent. And she's crying because, what are we going to do with Ben, who has severe speech and physical impairments? And how are we going to educate him so that he has a good life? And Elliot said to her, well Pegi, you can start your own school. So that's how it began.

Wow.

And now it's-- the AAC by the Bay, I think we have 35 external sites that we'll be attending. Vicki's on her way to Beijing. There's a Teacher-in-Residence that they'll be working with soon and again in Poland and Romania. So it has a broad reach. And there's a real effort to share that information on their website.

And I had an opportunity to go to Chennai in Calcutta with Vicki and her entourage to do some follow up with one of the Teachers-in-Residence-- several Teachers-in-Residence to see what they were doing, how they were implementing what they had learned at Bridge. So that was fun. I also want to say that when you go into the school, where in other schools, there are pictures on the walls of alphabet's and children's images and maybe lovely landscapes, in The Bridge School, there were pictures of rock and roll performances. It just makes it great.

[LAUGHTER]

There are pictures from--

Sounds like you're a fan of Neil Young.

Well, it's their pictures from The Bridge School Concerts from throughout the years. So there's some of Neil and Pegi. There's some of other bands. So it's just a real Hall of Fame when you go in. And it's a great-- it gives you pause. It just makes you smile, think, well that's a fun thing.

Yeah.

And one thing I want to say about The Bridge School is that the excellence of the staff just underlies the program. And there's ongoing support from experts like Christine. And the uptake from the staff of what information they're provided is really excellent. And they're very creative. So there's a lot of support for doing it right from the top, not just telling, but support to make sure that the staff has what they need to make a difference for each child.

Right.

It sounds like you have a lot of people interested to make sure it's successful.

Yeah. And there's no kidding around about that. I mean, there's no like, OK, well fine, it didn't work, maybe that child shouldn't be here. No, that's not the way it is. These are really tough kids. And if it doesn't work, they'll figure it out.

Yes.

Good.

They try. And that was why what they were so frustrated about was the lack of progress in kids who had CVI.

So my last question is how has The Bridge School incorporated CVI communication methodologies into the education program?

[LAUGHTER]

Doctor's out of question. [LAUGHS]

Well, I mean, that's just an impossible question. I mean, there are a lot of ways, a lot of ways, that that happens on a daily basis. And it's not the same way for each child. But there is thought in terms of what the environment is, where-- so it's leadership. I would say it's particularly Christine Roman-Lantzy's ongoing support. I think it has a whole lot to do with the leadership from Vicki Casella--

Without a doubt.

--and the support that the staff gets and the strong expectations that are for progress and participation. And then the staff uptake, they're excited.

It's a real gem of a place, because it's where-- I think leadership is key. And I think that Vicki, who is the director, is very, very special. And she is very demanding and very supportive and very involved. And it's a head and heart thing for her. She's really smart, and she really wants it to be right. But her heart is just in the exact same place. So it's a confluence of all the right things coming together. And it's been certainly my honor to play any small role in that process.

But I think the truth is, honestly, Valerie, that there's no place where I've seen progress for children without strong leadership. And I think it's one of the things that I would like to really highlight as just critical, that when you ask about obstacles, when you ask about progress, it always works back to that same thing, leadership. And without that, that's where the buck stops. And when I think of all the places where I think the greatest success has occurred for children, I can always work it back to a strong leader.

I think that's a case in a lot of things. You need someone who is passionate about what they're doing. Because there's the trickle down method. And if the person who's leading everybody isn't passionate to see the change, nobody else is going to take it seriously either.

Well, it's passionate but also accountable.

Yep.

Because it wasn't acceptable to the people at The Bridge School that these children were not progressing. How many classrooms around this country do we know of where it's OK if children don't change? There's always that this child so complex, or this child has seizures, or this child is out a lot because of surgery or this. And I see that even in the course that I teach for Perkins. There's a theme sometimes where people will suggest that there are these reasons-- or when I go into a new school or when I encounter a new team.

And the truth is we need to not accept those reasons. We need to say, well, that may be true, but we're still need to talk about how we can help this child be successful. So I think resources help, having the right information, being able to have the right tools, being able to get the right content, but then having a leader who says, now we're really going to do this. And there's no option. We're doing this.

And I think that the issue of success in a program has got to be front and center of the outcomes of the people who are being served. And so don't claim success if you don't have the documentation that what you're doing isn't making a big difference.

Right. So that works back to the research that's underway right now, to be able to not just self reflect but actually scrutinize your progress. We hope certain outcomes are discovered. But you don't know until you really do the work. And one of the great things about Bridge, and probably some other places as well, is that they keep incredible documentation. So we have that opportunity to now really study what happened and to do it in a very rigorous way. So it's very exciting. It's a little nerve wracking, but very exciting.

It's fantastic, though. It's really exciting for the future and to find out what you guys come up with from your project.

It is. It really is.

Well, I want to thank you both. The webinar was fantastic and our highest attended webinar we have ever had. So hopefully, we'll be able to have you guys back soon. But I do appreciate you taking the time to talk with me for a few minutes.

Thank you, Valerie, for all your help and patience.

Sure. [LAUGHS]

Thank you. It was fun. It was fun.

Yeah.

[MUSIC PLAYING]

The webinar that was referred to during this podcast is Vision Language Learning Communication, which can be viewed on perkinselearning.org. Thank you so much for listening. And we will see you next time.