11:42:19 .
11:42:20 >>>
11:42:28 >> They they they.
11:42:28 >>>
11:42:52 >> Test test test Texas School for the Blind  and Visually Impaired Coffee Hour on May 20th,  2021.
11:42:52 >>
11:42:56 >>> One two three four five.  ABCDEFG.
11:42:56 >>
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11:43:07 >>
11:43:15 >> Bun two -- one two three four five, test test  test this is a test, Texas School for the Blind  and Visually Impaired,.
11:43:20 >>>
11:43:20 >>>
11:43:22 >>>
11:44:24 >> Sara Kitchen, Lynne McAlister,.
11:44:25 >> Sara:,.
11:44:26 >> Lynne:,.
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11:44:28 >>>
11:44:28 >>>
11:44:30 >>> Christine Roman,.
11:44:31 >> Dr. Roman:,.
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11:57:28 >> .
11:57:28 >>>
11:59:07 >>> May 20th, 2021.
11:59:17 >> Kate Borg: Good morning, good  afternoon, everyone, we will get  started in just couple of minutes.   Glad you're with us today.
11:59:35 While we're waiting to start, if you  all want to take a look at your chat  box, there's a little drop down menu  where you type and it should say "all  panelists and attendees".  I think the  default is all panelists.  So you are  going to want to change that option to  "all panelists and attendees".
11:59:40 So that everyone can see your question  or your comment.
11:59:44 I will remind you several more times  before we get started [Laughter].
11:59:56 In the meantime, if you want to let us  no where you're joining from, we  always like to see where we've got  folk.  Hey, we were just talking about  Michigan.
12:00:06 >> We were just -- hi.  Michigan, yay!   My home state.
12:00:22 >> Kate Borg: Wow, some Canadians,  .   Lots of Texas, Delaware, hello.
12:00:34 Finally no rain!  I know Katy westover  from Utah.  Hi, everybody, we'll get  started in one more minute.  We still  got some folks coming in.
12:00:41 Please go ahead and make sure that  your chat box is set to "all panelists  and attendees".
12:00:50 So everyone can see your comment or  questions.
12:00:54 Hi Laura, good to see you, your name  anyway, huh.
12:00:58 >> Lynne: Hey, Diane.
12:01:12 >> Kate Borg: Yeah.  I love, I love  just seeing where everybody is from.   Far away places that don't seem so far  away when we get-together like this.   It's just kind of fun.
12:01:25 We will go ahead and get started, I  have some announcements and we want to  leave as much time as possible for you  to hear from Dr. Roman.  Our star of  the show today.  Let me go ahead and  give you some of those announcements.
12:01:40 Again, one more time, if you have a  question or comment during this  presentation, please post that in the  chat box.  Make sure that it says "all  panelists and attendees".  So that  everybody can see your comment or your  question.
12:01:46 Your microphones and cameras are  automatically muted.  So you don't  need to worry about those.
12:02:14 And there is no handout for today  because this is a Q&A session.   However, Dr. Roman is kind enough to  let us record this session so we will  post that in our archives.  Go to the  Coffee Hour web page, scroll down past  the list of sessions where it says  visit the new TSBVI outreach Coffee  Hour archives.  That is a link that  will
12:02:19 take you to the recordings,  handouts and chat information from all  of our Coffee Hour sessions.
12:02:43 Just a note to obtain your CEUs or  your professional development credit,  you will respond to the evaluation  that will be emailed to you from our  registration website, ESCworks and  enter the code that I will give you at  the end of the session.  No opening  close, just a closing code.  We will  stop at presentation at about five  minutes to the hour
12:02:46 so we can give you  that code and our closing  announcements.
12:02:54 Now, I'm going to turn the time over  to Dr. Roman, thank you so much for  being with us today.
12:02:59 >> Dr. Roman: My pleasure, hope  everyone's well, I thank you all for  being here.
12:03:13 I am going to start today actually,  I'm very interested in what your  questions are.  But I'm going to start  by just giving you a tiny bit of an  update about some things that I have  become aware of.
12:03:30 Some research things that I'm involved  that might help the whole field.  May  be of interest to you, maybe not.  One  of the big concerns is always having  outcomes based interventions, outcomes  based beliefs, having data behind what  we do.
12:03:54 So here are a few things that I  thought that I would share with you.   First of all, there is a replication  study being -- that's happening right  now, with Dr. Mark [indiscernible] and  some others that is really looking at  the reliability and validity of the  CVI range again, this time in a really  scientifically rigorous way.
12:04:17 Which is -- I think kind of the best  thing about this is that -- how, you  know, how rare it is for the medical  world to reach out to the educational  world and say, "We need to have -- we  need to be together on this.  You  know, my information, your  information, our information, all  important.  So let's make it as good  as it can
12:04:18 be."
12:04:20 So that's really fun.
12:04:49 There are a couple of studies that are  happening right now through the Bridge  School in California.  Those studies  are centered on eye gaze technology is  one of the sort of threads.  There  is -- there is also -- also a couple  other studies that are occurring  looking at specific things like  literacy and how they correlate with  the CVI
12:05:12 range and so forth so stay  tuned.  There's a study involved with   Cornell looking at eye gaze technology  as well hoping to identify children  with CVI, they are comparing it to the  standard of the CVI range.  So if  there's -- if they see changes in  their eye gaze, technology measures  and they correlate with the
12:05:15 CVI range  that shows the strength of both of  those responses, really.
12:05:42 So there are other things as well.   I'm not going to take your time to  talk about all of them, but it's  exciting to see that CVI has gone, in  my lifetime, from something in which I  couldn't even find another person to  talk to about it, except Dr.  Jan, to  now being a fairly hot topic with NIH  and people across all types of
12:05:44 disciplines.  So that's exciting.
12:06:02 So then I wanted to sort of pose my  own questions, actually.  One of my  questions is um -- that -- I wanted to  mention the fact that -- I'm sorry, I  was just reading something in the  chat.  I can't read and talk at the  same time.
12:06:13 But I wanted to say one of the  questions that comes up most often, I  don't know if this will come up today,  but I'm going to sort of start with  this, is that there seems to be a lot  of confusion around the word bubbling.
12:06:21 So I'm going to take this opportunity  to answer a question that hasn't been  asked, except it's been asked many,  many times to me.
12:06:26 So I think it's an important one to  address.
12:06:48 So the word bubbling, if you know the  Roman word bubbling, the name of that  is really a font and it was developed  by a person who works for Google.  It  is -- the bubbling in and of itself is  almost of no use at all.  If you are  bubbling a word and think that's going  to help a child learn words or learn  to read or learn something salient  about
12:06:52 a letter or a word, you are  not -- it's not going to be  successful.
12:07:07 I've had people say, gee, this doesn't  work!  Right.  Because it isn't the  bubbling that teaches the child to  recognize a word.  It is actually the  method you use to make the bubbling  make sense.
12:07:31 So if we have a word and it is  bubbled, the word is, you know, blue.   This is how I would approach it.  I  would say so we have a word here, the  word is blue.  It's spelled b-l-u-e.   The shape of the word blue has two  tall parts at the beginning and ends  with a short part.
12:07:41 The first letter is b.  One of the  tall letters.  It has a straight line  and a round part, round like a meat  ball.  Or round like a ball.  At the  bottom of it.
12:08:03 So the idea here is that we are really  helping the child learn phonemic  awareness, learning spelling, learn  information about the word itself in  context.  It should be a word that  matters to the child.  And then we  also work on having the child look at  the actual written word and match it  to the word shape.  If you have three  word shapes and
12:08:10 one word, which one of  these word shapes, which one of these  containers holds the word blue?
12:08:24 Because even when children can learn  to read, children with CVI can learn  to read words without bubbling, some  children will do it just fine.  Other  children will do it but then they get  hung up in fluency.
12:08:51 And so if we can teach them to look at  the word shape even meta cognitively,  even just  subconsciously, think about  that word shape they will be able to  read more quickly.  The internal parts  of the word are where children with  CVI get hung up.  When they sound out  letter after letter after letter, that
12:08:56 can become so laborious, that they are  visually fatigued after two or three  words.
12:09:16 So it's not that there is less value  in the traditional way of teaching a  child to read.  It's highly valuable.   It's that we have to find a work  around for children with CVI.  So that  they can actually have enough vision  energy to read and the word shape is  the thing that will get that child  more efficiently from word to word to  word.
12:09:43 But not at the cost  phonemic  awareness, also spelling, not at the  cost of something that would be  interesting.  I also often recommend  that we don't start this process with  things that are traditional core  words, but rather create a personal  set of core words because
12:09:49 we also know  that motivation and personal  attachment to this process will really  help make it more meaningful.
12:10:13 I also want to say one other thing  about the word bubbling.  I don't  traditionally teach children 26  letters of the alphabet then say now  we will show you a word.  But rather  show you a word and teach you that  letter as it occurs as a salient  letter.  At the beginning or maybe the  middle of the -- of the word until all  26 letters have been mastered,
12:10:16 but  within the context of a word.
12:10:30 This gets children moving much faster  and it makes it more rewarding.  It's  a top down approach, so we're going to  start with the words and build around  it, versus a bottom up, you have to  learn all of the building blocks  before you get a word.
12:10:37 They have a parallel for this, by the  way in the world of visual impairment  and that's called Braille.
12:10:52 Where I got this idea from -- from  thinking about patterns, how we  taught -- how we still teach children  to read, read Braille.  We give them  the ability to be successful with  words pretty quickly.
12:11:05 So that's a concept.  The word  bubbling, in and of itself, is -- it's  just -- it's the strategy and remember  the strategy is not the method.  It is  just -- it's an external tool.  Okay?
12:11:08 So I hope you don't mind.  I wanted to  clear that up.
12:11:22 Then I also -- we'll see -- I'm going  to hold off now and take your  questions, but if anybody has a  particular question about scoring the  range, and I have couple of thoughts  about that as well.  But let's see  what your questions are.
12:11:27 So -- so Sarah, will you be reading  these to me or Lynne?
12:11:42 >> Sara: I'm going to read you a quick  one.  This is from a TVI in Los  Angeles, California.  Who would like  to participate in the study with  Dr. [indiscernible].  So she would  like to know how could she find out  more about that?
12:11:53 >> Dr. Roman: The study is one in  which the -- the -- there are -- the  only people being recruited for the  study at this point are children.
12:12:19 So Dr. Borchet or his partner,  Dr. Chang, will diagnose a child with  CVI and then those children will  receive a CVI range score and that  score will then be sent out to two  other evaluators, who have no -- that  watch the video and they will score as  well.  And then that child -- that  same child will be retested a year  later and those scores
12:12:28 will then be  sent to a different evaluator to make  sure that the scores are so and so.   So at this point we are recruiting  children.
12:12:49 The second study, the study to follow  this, will be one -- will be an  intervention study.  So that will be  really important, but Dr. Borchet  wants to make sure, if any of you know  him, you know he's a stickler for  study design.  Wants to make sure that  the CVI range is reliable and valid as  we believe it is.
12:12:52 Then the intervention, so stay tuned.
12:13:04 If I live long enough, he wants to  eventually go to congress with it.   I'll probably be, you know -- I'll  probably be -- I don't know.  I'll  have to be wheeled in at that point.   [Laughter].
12:13:15 But stay tuned, I'm very, very, very,  very pleased that we have this  collaboration.  It's time.  It's  beyond time.
12:13:20 >> Sara: I think it would definitely  be worthwhile to wheel you in.
12:13:40 There's another question that came  through the website from Susie and she  is asking what do I do when my student  no longer seems to have a color  preference?  She's now five years old  and headed for kindergarten.  Her  early intervention provider said she  she's about a 7 to 9 on the CVI range.
12:13:48 >> Dr. Roman: Perfect.  This is going  to address the question that I was  going to ask myself, which I wanted to  address about scoring.
12:14:07 So first of all, the biggest error  that people make scoring the CVI range  is they overscore.  They overscore.   So let me share with you that I think  that I could count on one hand the  number of children that I have ever  scored as a nine in either rating one  or rating two of the CVI range.
12:14:14 So that just -- that indicates to me  that it's -- this overscoring is  certainly a problem.
12:14:39 Part of the reason that I think we  overscore is that any of us who are  working with children who have complex  needs often don't have a real strong  perception of what is typical.   Because we don't -- we don't spend as  much time watching that, learning  that, being in -- you know, in groups  of children who are typically  developing.
12:14:48 So let me talk about the  characteristic of color as a metaphor  for all of the characteristics.
12:15:17 In 2007 I published a book that has  been, you know, updated in 2018.  One  of the biggest issued there is that  the word "Resolved" no longer exists  attached to the CVI range.  What most  of us have learned is there's no  resolving, there is improvement,  improvement, improvement.  So the  characteristics over time sort of  morph and change but don't
12:15:29 go away.   In fact they almost get a little bit  insidious.  You think this child can  look at something that's not red or  yellow, in fact there's no red or  yellow even around it.  So color must  be resolved.
12:15:38 The question that you ask yourself is:   To what extent is color important to  this child compared to children with  without CVI?
12:16:00 So in rating 2, you have each  characteristic, color would be one of  them, and you have the option to score  is 0, .25, .5, .75 or 1.  I always  suggest you start at the two ends and  say, well, this is what I'm doing with  the people that I'm training for one  of the studies right now.  I say, you  know, don't use the scoring guide all  of the
12:16:03 time.  Read it, be familiar  with it, close the book.
12:16:27 Now I want you to think about this as  color is zero if it's a full blown   characteristic and the child looks at  red, only red, if it's not red they  don't look, that's zero.  One is color  is no more important to this child  than any child their age.  They are  five years old, they can perceive most  colors, don't matter, I can pick
12:16:31 anything off the shelf.  If you think  neither of those are true you start  moving in.
12:16:53 You start moving in -- let me just say  if you come in from the .1 and go  lower to .75, the question that you  ask yourself is when is color  important for this child?  If it's  only important on occasion, like I'm  trying to show you on this new math  paper you keep mixing up the addition  sign with the division sign, I need to  color highlight that
12:16:55 so you can really  see the difference.
12:17:15 Color is not resolved.  Right?  If  it's about half of the materials, half  the time or the environment.  Let's  say you are doing O and M and you  think this child is really still not  oriented in space, but there is a red  exit sign at the end of this hall.   That red is going to anchor this  child.
12:17:18 Then the color is not resolved.
12:17:32 So we have to ask, if you or I were  going out and we don't have CVI, even  if just the word exit were there and  it was black and white, we would still  be fine, we would know that was the  exit.  But if the child with CVI would  not, then color is more important.
12:17:51 So it becomes more subtle.  And often  our scores are inflated not because  the child has resolved that  characteristic or CVI, but more  because we have not really thought  deeply enough about how those  characteristics change over time.
12:18:02 So know that if you are scoring a one  in rating two, like meaning that  characteristic is all better, it's  just like other children their age, I  would ask you to think about it.
12:18:10 Because I -- it is so rare that I  score a one.  For -- in any  characteristic for any student.
12:18:33 The other thing that people confuse,  they think when they have a child who  is bright and academic or really  clever, that that cleverness, almost  sometimes con founds your ability to  think about their CVI.  That means  that you have to bring in materials  that challenge that child that you  might not use with the child who had  more complex needs
12:18:37 in order to get at  the root of them, right?
12:18:58 So it becomes -- that's why Phase III  is its own special world.  Because  there is so much to learn about  children whose vision exists in Phase  III that we are likely to make errors  that leave the child without support.
12:19:22 So that's my big preach about that,  that overscoring is the number one  thing.  And if you are scoring either  rating one or rating two as a nine, I  would say anybody who scores a nine,  even an eight, I would say that you  need to really find another person to  assess with you to look at that child  with you and say, are you seeing what  I'm seeing?
12:19:23 Because it can happen.
12:19:25 But it's pretty rare.
12:19:45 Pretty rare.  So that's why again you  have the Phase III extension chart  because we know that once you get into  Phase III, the scores change very  slowly, but the skills improve.  The  skills continue to improve.  So we  start to break Phase III apart.  I  hope that was helpful.
12:19:51 >> Lynne: Dr. Roman, we have a couple  of questions and comments about going  back to that literacy.
12:20:03 Have you ever used the handwriting  without tiers formation of letters,  word shapes, to identify with the big  lines, little line, big curves, little  curves?
12:20:24 >> Dr. Roman: Yes.  That handwriting  without tiers is pretty popular.  I  think it can be helpful for some  children.  But when we think about the  fact that children with CVI have  difficulty interpreting what they see,  not seeing so much but interpreting  what they see, then we know what we  have to do is recruit comparative  thought.  Comparative
12:20:26 language.
12:20:45 So that's why there sort of can't be  one big list of salient features  because we have to -- we have a -- we  have to call things, we have to name  things and describe things based on  something that we know the child knows  or is likely to know.  So curved lines  may work, but they may not.
12:21:02 So that's why I called the circle at  the bottom of the letter B a meat ball  because there's a boy who learned his  letters knowing that every circle part  was like a meat ball, that immediately  formed an image in his mind to help  him know that.
12:21:06 So it's usually not one side fits all  kids.
12:21:28 But it is -- it's about helping them  know.  So sometimes -- sometimes I  will even ask a child, take the letter  out of the shape, if I'm teaching  them, you know, a word or let's say  I'm teaching them a letter because I'm  trying to emphasize the difference  between D and B, I will say what does  that look like to you.  They can tell  me using
12:21:37 AAC or talker or whatever we  they communicate they can let me know  what they think it looks like.  It can  match.  That's what I want to use.
12:21:50 If they tell me this looks like a golf  club, how they would know that I don't  know.  But I had a child with CVI ask  me the other day if I was fully  vaccinated and which vaccine did I  have.  I thought how do you know that?
12:21:54 But so we don't know what children  know, right?  We don't know all the  time.
12:22:10 So let's say he says that looks like a  golf club to me.  Then I'm going to  say, this is like a b, like a golf  club, it has that part at the bottom  that is way at the bottom and sticks  off to the right or, you know, is  positioned to the right.
12:22:20 So don't ever forget those personal  references.  Because those are -- the  things that are going to help create  that visual imagine that's going to  make more sense to that child.
12:22:23 But I do like their concept, the  concept.
12:22:46 You can also help children learn  salient features of letters by having  them sort them.  Sorting and matching,  not sorting and matching like show me  one like this, but putting on an array  of letters and saying show me all of  the letters that have a straight part.   Show me all of the letters that --  separate activity, that have a hook  underneath.
12:22:58 Show me all of the  letters that have something that  crosses a line.  That will also help  reinforce the internal parts of  salient features of those letters.   You can do it with word shapes as  well.
12:23:20 If you think there's only three  letters in this word, let's put it in  this pile.  If you think there are  five letters in this word, put it in  this pile to help them to again to  start visualizing and creating t imagery  in their mind.  This is why the moth  set is so helpful for kids with CVI  because it helps launch
12:23:26 a visual  representation of a numeric concept.
12:23:34 >> Lynne: Thank you.  There's another  one, let me find it.  Is it better to  teach upper case and lower case at the  same time?  If not, which is first?
12:23:40 Is the bubbling only to be used with  the lower case?
12:23:52 >> Dr. Roman: It can be used in the  way that is most natural.  In the most  natural to that child.  To what they  are going to be -- what they are going  to be presented with.
12:24:04 [Dinging].  Can you hear that?  I'm  sorry, I need to turn that off.   What's most natural for them.  Let's  say that you are learning somebody's  first name.  It's natural to put a  capital letter there, right?
12:24:27 So I would do that.  Now, depending  upon the literacy path that child is  on, so maybe you know this child, the  parent has decided in their Learning  Media Assessment perhaps sensory  balance that the goal is to have this  child learn sort of survival words  versus read for pleasure.  If they are  going to read for pleasure we have to  definitely
12:24:40 teach capital letters I  would teach them naturally as they  occur.  I wouldn't teach all of the  capital and then all of the lower case  letters that match it.  I would do it  naturally as they occur until you have  kind of worked your way through all of  them.
12:25:04 The exception to that would be if the  child is in a fully, in a classroom  where -- in an integrated classroom  where they are following along the  same lessons that other children are  doing and the teacher has chosen, they  teach a capital and lower case  together or teach all capitals and all  lower, that's what I would do, also.   So the child is
12:25:05 getting that as well.
12:25:20 So in other words there's no one  answer.  There's no one answer.  But I  don't think that I would teach them  all capitals and then all lower case.   I think that I would start to  introduce capital letters as they  occur naturally.
12:25:36 >> Sara: Thank you.  We have a  question from Laurie who is asking,  she says she knows how to do the  [indiscernible] range but gets stuck  on how to choose and/or create lessons  and wonders if there's a resource with  ideas.
12:25:41 >> Dr. Roman: Right.  So if only, huh?
12:26:01 So here's the thing.  I think that's a  great idea.  I struggle with that  myself.  I struggle with it for this  reason:  Because I am so afraid of a  cook book.  A cook book would be  deadly for a child with CVI.
12:26:14 What I prefer to do is to -- to really  think what is this child trying to  learn, what is the teacher trying to  teach this child, what is the child  interested in?  And then take it from  there.
12:26:41 But if you want to know how to  actually start that process, what --  you know, how to take the information  from the CVI range and apply it to  actual learning, if that is a better  way of thinking about it, what I --  what I really -- I don't know if this  is inductive or deductive, what I  really do is think again about  starting with what the
12:26:46 child cares  about.
12:27:05 Let's say they care about Muana.  This  child scores about five on the range,  I can make a set of slide images and  use a few bubbled word to parallel the  story that they are listening to.
12:27:27 And I would present it that way.  On  the other hand, so -- in other words,  it's all starting with that score and  the score is like the corrective  lenses that you are putting on a  child.  It becomes their access.  Then  you just teach and you teach what that  child needs to know.  So let's say we  are trying to do AAC, you know?
12:27:36 Because there aren't CVI lessons.   There are CVI approaches to everything  that the child is trying to learn.
12:27:53 And so -- so again I will say because  of the sensory balance framework, we  know sometimes vision is going to take  the lead, sometimes auditory is going  to take the lead, sometimes tactual is  going to the lead, when one takes the  lead the other two support.
12:28:06 Let's say I know this child scores six  on the range.  If they score two on  the range.  I know if they score two  on the range the visuals are going to  be very, very limited to what I need  to do.
12:28:23 But if you are looking for actual  goals that you want to teach the  child, I'm talking about the things  that you would look at in the  accommodations part of the IEP, where  you think this child needs color,  right, movement, low complexity, not  very noisy, those are accommodations.
12:28:43 Let's say that you are thinking about  the goals that you need to teach and I  don't know if that's what you are  asking.  That's when we look at things  like novelty and complexity and so  forth and we think I need to help you  learn salient features.  I need to  help you learn the key, the code for  interpreting information that's new.
12:29:08 So how do I go about -- how do I write  a goal for you in your IEP about  learning salient visual features, how  do I write a goal for you about  learning your position in space  relative to your CVI.  That would be  an O&M one.  How do I write a goal for  you for how you are going to engage in  a social situation?  Like how do I  write a goal for you
12:29:12 for self  advocacy, for self-determination?
12:29:23 Those would be direct instruction  areas.  So the -- there really are  those things where we have the direct  instruction and the accommodations and  they both have to be there.
12:29:47 Because -- because, you know,  anyplace, any time that the child can  potentially be using their vision, we  should be thinking about  accommodations.  But that's not  enough.  We also have to think about  what is -- what are the specific  skills that I need to teach you that  aren't going to happen in math and  reading and phys-ed.  Because
12:30:04 I have  the responsibility to teach you those  salient features, I have the  responsibility to help you learn  comparative thought, those kinds of  things, okay.  So it's really about  two big streams.  The accommodations  that apply to everything, to the  greatest extent possible.
12:30:12 Obviously if the child is getting  fatigued we have to have a Plan B,  plan C.  We're not going to have  everything be visual all of the time.
12:30:23 The other part is what is my  responsibility for direct instruction  for you.  As a teacher of the visually  impaired, as an O&M specialist, I hope  that helped.
12:30:44 >> Sara: Thanks, Christine, we have  one from Hannah.  That I will type  into the chat since she asked just the  panelists accidentally.  One of the  kids that I work with does not have  control of his eye movements due to  brain damage, birth to three age  range.  It's difficult to know what he  is noticing and I'm not sure what his  fixation
12:30:50 potential is.  How can I know  what's working or not working with the  interventions being introduced?
12:30:59 >> Dr. Roman: Okay.  So this is a  person you said we have an approximate  phase for that child or anything?
12:31:02 >> Sara: Not that I can see here.
12:31:06 >> Dr. Roman: The child has difficulty  with their eye movement.
12:31:09 >> Sara: Sorry, Phase I.
12:31:34 >> Dr. Roman: All right.  In Phase I,  what we're looking for, okay, so the  child in Phase I is going to have  pretty much operating fully with   dorsal stream, peripheral, where  system, that doesn't tell us the  detail but helps us orient to it,  right, light, color, movement, form.   Those are all dorsal stream things.
12:31:49 So the expectation that that child  would have controlled eye movements at  that time isn't probably realistic.   The expectation that that child would  show, eye to object contact, is not  realistic.
12:32:09 But what you will see is that child  know that it's their dorsally and  begin to turn in the direction of it  like I am, okay?  So I introduce  something, the child is not looking,  not looking, I introduce something  with light and color and movement, not  noisy, the child sort of ceases for a  moment and begins to turn in that  direction.
12:32:37 That's what you can expect.  Okay?  So  make sure that your  expectations are  doable, what you are looking for is  actually doable.  If you are looking  for eye to object contact in Phase I,  you will only see it towards the end  of Phase I, it will be fleeting.  The  ventral stream vision was probably  just activated.  But the
12:32:43 real hallmark  of Phase I is not ventral stream  vision, it's dorsal.
12:32:51 Like [indiscernible] report, I don't  know if she's seeing it at all.  I  don't think she's noticing anything.
12:32:56 And that's also when parents will say  like they are looking through me,  right?
12:33:11 When I can show them when I introduce  a stimulus, I introduce something  that's like the lighted colored  slinky, there it is, there it is, I  see the child turn in that direction,  I know they do see it.  That's how you  know.
12:33:37 What you are hoping for is enough  opportunity, it's hard in Phase I,  that you get ample opportunity that  that dorsal stream becomes rich and  reliable and all of a sudden you again  to see some ventral stream function.   You begin to think I don't remember  seeing you lock on like that before.   You know?  That's when you kind of  re-evaluate the
12:33:58 child because it's  likely their score has improved.  It's  not until Phase II that our  expectation of eye to object contact  is something that's reasonable and  should be built to be more and more.   That becomes the job really for the  rest of the CVI range to build more  and more ventral stream vision.  That  often has us feeling
12:34:12 a little bit -- a  little bit unskilled because --  because we're not getting that kind of  visual response that's confirming.   Right?  It doesn't feel very  confirming until the child does this.
12:34:32 But in -- but you can see it change,  so you know how -- let me use a  parallel here.  You know in partner  assisted auditory scanning, that we --  that you don't need a device or  anything, you can just use a  differentiated response, right?  So  you say to the child, you can show  them things or you can just say do you  want -- do you want the --
12:34:52 humpty   bumpty books, Elmo book, three bears  book or something else.  When you see  the child stop and show some different  response on their person, that's when  you shape that and say, oh, I think  that you were feeling telling me that  you want the three bears.
12:35:06 That is like a parallel for what you  are going to see visually in Phase I.   You are going to see a body based  response that's going to let you know  that child knows there's something  going on and it's over here.
12:35:29 That's why pictures, photographs, you  know, your face, those are all too  hard in Phase I.  The most you can get  is attention to the target that is  light and color and movement.  Does  that help?  Is that what you were sort  of asking?
12:35:50 >> Lynne: Yrks he thank you, Hannah  says.  Yes.  Thank you Hannah says.   The next question Christine is what  would you hope that new orientation  and mobility specialists entering the  field would know about CVI and working  with children with CVI to help them  develop purposeful movement and  greater levels of independent travel?
12:35:51 >> Dr. Roman: Uh-huh.  Okay.
12:36:19 So I'm an O&M specialist, among other  things.  I'm pretty passionate about  this.  I believe all -- all human  beings have a right to be oriented in  space.  I don't think any of us should  feel as though we are falling through  a tunnel, we don't know where we are,  the beginning or the middle, we don't  know what's up, we don't know.
12:36:35 I want to say first, I don't know if  it's out yet, there will be a  reference the new foundations of O&M  textbooks.  I just finished a chapter  on CVI that's I think pretty thorough  and really addresses kids with complex  needs.
12:36:51 But aside from all of that, what I  would like you to emphasize, what does  an O&M person need to know, they need  to know that the characteristics of  CVI are very much in play and  critically important in O&M.
12:37:02 And so often I will see in my courses  or somewhere in life that people will  say, yeah, but this is -- O&M is  different, we don't have to know, do  the CVI range or any of that.
12:37:16 Well, I would hope you would.  Because  the characteristics don't turn off  when you are trying to move through  space.  They become pretty -- pretty  interfering, pretty impactful.
12:37:36 So most children with CVI, this is  one  of the basic things that I would ask  people to know.  Any child with CVI  who is ambulatory should be given the  opportunity to use a cane, almost all  children with CVI have difficulty  seeing in their extreme lower field.   We know they are very much at risk.   People will say they have depth  perception
12:37:46 problems.  It's probably  that lower field or the visual mode of  characteristic.  Not a classic depth  perception problem.  So keep that cane  in mind.
12:38:11 But even beyond the mobility part of  it, the orientation part is critical.   I really like to help kids know where  they are in space by using  photographic images, video on the  iPad, previewing an environment,  we're going to go -- we're going to go  to the cafeteria.  And today instead  of having Ms. Sally push you the whole  way there, I want
12:38:30 you to tell her when  it's time to turn and then she will do  what you say.  You show the childlike  this is -- beginning place this is  where we start.  And remember when  we're about halfway through, there's a  corner here.  This corner has a piece  of red tape on it right now, but you  will also notice the clock is up  there.  We turn right
12:38:30 up there.
12:38:42 How do we know that we're at the  cafeteria and you come up with a  visual there, you show the child this,  then you can even take a video of  someone moving through that space,  right, then reversing the route.
12:38:45 Previewing it is really helpful.
12:39:04 Also, you can use the photographs to  sequence them, show me which one of  these pictures is first.  Which one do  we see first?  Which one do we see  when we know we're there?  We're  helping that child become intentional.   In reaching out into their environment  and making sense of it.
12:39:22 The problem is so many kids with CVI  can move through space without bumping  into anything, even though they might  fall on a drop off or an obstacle  because of their dorsal stream being  so strong.  There doesn't mean they  know where they are.
12:39:35 One of the things that I do at the  hospital here all of the time is ask  people, I ask them, well, we go out in  the hallway and do a little activity.   I will say show me the way back to my  office.  It's literally two turns.
12:39:47 And I -- I tell ya, I can count on  less than 10 fingers how many children  can do that.  It's kind of  fascinating.  Because they are not  gathering information incidentally as  they move through space.
12:40:09 One of the other big principles that I  would ask you to think about, making  maps, whether they are photographic,  video previewing, whether create being  a visual and tactual map for older  kid, representational maps, not even  older, but for kids who are at that  place where they can begin to look at  representational maps.  But even those  maps
12:40:15 must be adjusted for their CVI  needs, using color, light, movement.
12:40:30 And let me also say that one of the  biggest mistakes that I see in O&M  makes me not real comfortable is that  most children when they are evaluated  for O&M services are only evaluated in  their familiar environment.
12:40:46 And you -- you will not see what you  need to see.  Because so many children  with CVI memorize their space based on  some wash of information that's not  really -- they can't even tell you  what it is.  It's just I go this way.
12:41:06 But take them into a new environment  and this is one of the questions that  I ask parents, what does your child do  when you are in a new environment?   Cling to me, cry.  I would never let  them very far out of my sight.  They  have to be right here with me.   Because they don't -- they know this  child inherently is not really using  visual information
12:41:09 to orient  themselves in space.
12:41:32 So it's a very big deal and one of my  hopes and dreams is that more children  with CVI will receive CVI appropriate  O&M in which we look at the impact of  color and movement, movement is so  impactful.  Sensory complexity.  It's  noisy.  You know, you can move down  the hall where it's quiet, you put a  bunch of kids in there making noise  and foot
12:41:45 footsteps, slamming of lockers,  they are completely disoriented.  You  have to know CVI if you are going to  teach children O&M appropriately.
12:41:59 >> Thank you, Dr. Roman.  The next  question, they are pouring in now.  Is  it best practice for salient features  to be decided on -- by the parents if  the child cannot communicate the  information?
12:42:12 >> Dr. Roman: So a parent can give you  information about what the child might  know.  You know, my child's favorite  things are a ball and a brush.  So  which -- how do you use that to  compare other things, right?
12:42:35 But also what I want to say is that if  a child is non-verbal, it doesn't  mean they don't have receptive  language, right?  That's where we want  to -- if the parent lets you know, you  can get that information in the parent  interview.  It's a great point because  maybe this child loves, loves, loves  to watch, you know, what's one that I  have heard
12:42:58 recently like police  emergency PD or some such thing.  What  they love in that show is they love  the movement of the cars, they love  the cars and they love I don't know  what else.  So that would give you an  idea to talk about things as being,  you know -- you know, compared to  those shapes.  Using that as a spring  board, right?
12:43:23 So this -- this is round, round like  the wheels on the police cruiser.   Really, without getting that  information I don't know how you would  know how to begin.  Because remember  CVI is a condition in which the child  can see but cannot interpret what is  seen.  We want to start with what has  already been loaded into their visual  memory, I have
12:43:35 an image for this, it's  reliable, we're going to build from  that.  Absolutely find out from the  parent what the child knows and is  interested in.
12:44:03 >> Sara: Thank you.  A bit of a long  one now, several different questions  in it.  Here we go.  When parents  bring their child to come see you, how  can an authentic CVI score be given  when you only see the child for  approximately one and a half to two  hours.  Next part, do you only the  take parent input.  I've had parents  exaggerate on
12:44:08 what their child can do,  do you get staff input on their child?
12:44:28 >> Dr. Roman: Great questions.  When  the family comes to see me at  pediatric view, I have a huge  challenge.  The challenge is first of  all the CVI, interview, observation,  direct assessment.  I have to be the  best observer I can possibly be  because I don't get to see this child  in school, I don't get to see them at  home.
12:44:50 Now with virtual stuff, I am now  seeing children at home.  So I get a  great sample that way.  I can  supplement observational things with  parents' videos.  They show me videos.   I will say can you show me anything  about that, well, yes, I have a visual  of this birthday party, watch how they  puts her head down the whole time,  thank you.  There
12:45:01 are ways to do it.   Not as good.  Not as good.  I don't  think anything in a clinic setting is  as good as in the natural setting,  right?
12:45:13 Then when you do the interview, I  really have to again listen with  every -- with every fiber of my being.   I do take notes.  You could record if  a parent allows you to do that, you  could record.
12:45:25 But I want to get -- capturing this  information.  And then the direct  assessment part, you know, I mean all  that I can say is that, you know, I  can do it.  I can -- I can do it in a  two hour period.
12:45:29 Partly because I've done thousands of  them.
12:45:34 But I want to -- I also want to say  something about parent interview.
12:46:03 That -- that parents don't always  report accurately.  They almost always  do, but not always.  They may not even  quite understand what you are saying  or they may have -- this child with  CVI may be their only child so their  idea of eye contact is really  different than your idea might be of  eye-to-eye contact.  With you that's  okay.  Also observation
12:46:25 and direct  assessment.  I have three data points  that I'm using.  Three.  They don't  all have to agree but I'm going to use  the two that are in agreement.  I'm  going to use what the greatest  evidence is to score it.  That's why  in the OID columns sometimes I'll  score -- I'll check under their  observation and direct and not put a  check or not
12:46:34 address -- I will make a  point of saying it's not interview,  the interview doesn't agree with this.   That's okay.
12:46:45 Okay.  It just tells me that all three  date points weren't in agreement, but  two out of three were.  So I really  have to try to capture the information  best I can.
12:47:06 So -- so I -- you know, I don't -- I  don't -- I also -- I guess that I can  also share with you that there have  been enough reliability checks, you  know, when kids go back to their  district and they have a CVI range  score at home.  I find that mostly the  scores agree with what I have found.
12:47:21 Okay?  Mostly.  Not  always, but  mostly.  So it is a challenge.  It  would be so -- honestly, those of you  who work in the schools, you have a  much greater advantage of being able  to do this more efficiently.
12:47:25 I don't interview other people.  It's  a parent interview.
12:47:41 So I watch somebody do an interview  the other day at a place that shall  not be mentioned and they had a team  of people on virtually in the room  with them and they were asking the  interview questions to the parent, the  grandparent and like four team  members.
12:47:43 Why don't you do that?
12:48:04 You don't do that because first you  never do a written inventory.  It has  to be verbal.  It can be on the phone,  it can be with Zoom, it can be  face-to-face.  We know from research  that people answer questions  differently when they are asked  face-to-face versus asked to write it  down.  It's not a written inventory.   Do not ask a parent
12:48:05 to write it.
12:48:14 When you have people that are thought  of as professionals in the room,  parents will also answer questions  differently.
12:48:20 And they -- they often take their  lead.  So -- so, again, this is an  example.
12:48:37 For an interview, even if there's no  one else in the room and I ask a  parent so -- so -- so have you ever --  do you have concerns about the way  your child sees.  They will say well  the eye doctor says, I will listen, I  will say but what do I think, I would  like to know what you think.
12:48:41 Because that parent holds information  nobody else has.
12:48:50 And if I -- if I somehow suppress  their information, by bringing in  other voices, I'm not going to get  their genuine responses.
12:48:55 Then it's up to me to decide if I  think those are actually accurate.
12:49:12 But I -- I only use a teacher for the  interview or a nurse or somebody who  is with the child a lot if I  absolutely can't get a parent.  A  foster parent is better than a teacher  if the child has been in -- with that  foster parent for a long time.
12:49:21 The questions are designed for  parents.  They are not designed for  teachers to answer.
12:49:33 Do you want to expand more on that?   Are there things that you want to say  beyond that.  There must be something  on your mind, like how on earth do I  pull this off in two hours?
12:49:40 >> Sara: Well, it would be in the chat  somewhere, but I'm stuck on this one  question, I don't know if I can find  it.
12:49:44 But if we come across it I will come  back to you.
12:49:55 >> Dr. Roman: Great.  You know, once  COVID is all good, anybody who wants  to come and observe, you are welcome  to come and, you know, hang out with  me if that would ever be helpful to  anyone.
12:49:57 >> Sara: That would be great.
12:50:21 So we have a question, if you would --  asking if you would ask the sensory  balance and how to approach breaking  down tasks and activities throughout  the student's day.
12:50:43 >> Dr. Roman: Breaking down in terms  of what would be visual -- I will be  brief about sensory balance.  Sensory  balance is a pamphlet type of book,  that I think that I have one here  somewhere, that is a Learning Media  Assessment for children with CVI.  It  addresses the unique needs of children  with CVI in that it is -- there is  this expectation
12:51:00 of improving vision  and it's not used to determine a  primary and secondary learning medium.   It is meant to be a way to think about  all senses in balance.  So in Phase I  vision is way out of balance, right?   Tactual and auditory probably way up.
12:51:24 The goal is to try to get that out of  balance vision and help it to come up  to balance with the other sensory  functions.  So it's a -- it's -- an  assessment that should be done on a  fairly regular basis around the same  time that you would repeat a CVI  range, I would think, and it's a way  to also identify what kinds of media  the child currently
12:51:30 is able to  visually attend -- look at and  interpret.
12:51:39 So there's an inventory for that.   What kinds of environments can the  child be in and still visually attend  and interpret.
12:51:42 Like what -- what's okay and what's  too much.
12:52:02 And finally what kind of equipment.   And then in that you write a plan for  how you're going to help improve  visual function, how tactual with  support, auditory will support and  what's the long-term literacy goal,  what's the long-term literacy goal.   That's determined by a family member.
12:52:27 So it's a way -- it's a two sheet.   Just two pages and it's a way to  really look at how this breaks down  differently for kids with CVI  versus -- so one of the big fears, for  example, was that one of the big  concerns was if a child in Phase I  participates in a traditional Learning  Media Assessment, it looks like they  are a tactual learner
12:52:41 between, you  know, visual and tactual in a way.   Tactual would be more common.  Then  the -- the -- the following piece  would be, well, they might be on a  Braille or pre-Braille path.
12:52:49 But that's not considering the -- the  overarching goal of improving vision.
12:53:02 So -- so we don't necessarily want to  start with Braille when we believe  that this child is going to be in  Phase II and hopefully Phase III and  in which they probably are not going  to find Braille as efficient.
12:53:11 So it's a way to keep checking in with  the child and looking at what  materials, what they should look like  and that kind of thing.
12:53:16 So that -- so that we are achieving  sensory balance.
12:53:32 Another example of this, I will share  with you, so the other side of this is  that -- is that I've known some  children who have been provided  Braille instruction who have CVI  because of the way the Learning Media  Assessment sort of drove them to do  this.
12:53:47 I mean, it was very clear.  This is a  tactual learner.  What I have also  found is that among those children  that I know that use Braille that are  not very many, but a few, not a single  one of them scores above four and a  half on the range.
12:53:57 So what the concern is that if we make  your world tactual, will we be giving  you enough opportunities to get your  vision into balance.
12:54:02 That's the concern.
12:54:24 >> Lynne: Thank you Christine, we only  have a few minutes left.  We have time  for one question that might be a  biggy, so you if can hit the high  points.  13-year-old student with CVI  range [indiscernible] the TVI does not  support the salient features teaching  because she is not certain of the  child's cognition.  Will you explain  the role
12:54:32 of salient features in  developing language and  [indiscernible] visual library  functional use and vision?   [indiscernible]
12:54:55 >> Dr. Roman: CVI is a condition of  visual deprivation.  Deprives the  child of access to their world.  It  deprives them of access incidentally  and directly.  Therefore we don't have  a clue of what the child's cognitive  ability truly is, we don't know.  One  of the better ways to find out is to  look at receptive language.
12:55:22 Just, you know, if we -- if we only  taught babies words they know, dot,  dot, dot, so we have to -- we have to  assume that the child will benefit  from building their receptive language  by giving intentionally, using things  that they are in direct contact with  so you love this ball, ball is round,   round, round, ball is round.
12:55:32 This is  your cup, you use a cup with a little  spout on the top.  It's sort of like a  duck's bill, two little flat parts  that come together.  Okay.
12:55:47 The point is we're assuming that you  will benefit from this.  If we do it  consistently enough, I believe we will  help that child develop the receptive  language that helps begin to fill in  the gaps.
12:56:04 If -- one of the things that I have  learned from Sarah Blackstone the AAC  expert that she is, I honestly say  this now, it may be a bit of an  exaggeration, but I believe that if  you don't have language, you can't  see.
12:56:17 There's such a close relationship  between vision, language and learning  that if I don't give you specific  language, how are you going to learn  that this is a ball, right?
12:56:32 But, you know, it's round.  But -- but   a doughnut is not a ball, right?  They  both have essential round parts.  It's  language that's going to help you  differentiate that.
12:56:43 Supported by me showing you the  salient features of well, see a  doughnut is round, also a round part  in the middle that it's cut out, for  example.
12:57:07 So language is essential to cognition.   And children with CVI are deprived of  this because they don't have joint  attention easily, they don't look at  it, we don't talk about it.  We make  the assumption that they are not  capable when really they may not have  had the opportunity.  I see that I'm  getting a signal here that I think  we're
12:57:11 at the five or three minute  mark.  I'll stop there.  Thank you so  much everyone for your time.
12:57:18 >> Kate Borg: Thank you so much,  Dr. Roman.  My very subtle turning my  camera on signal.
12:57:21 >> Dr. Roman: I got it.
12:57:35 >> Kate Borg: Thank you, there's so  many questions and so many things we  didn't get to.  Next year we are  continuing Coffee Hour.  So maybe we  will be able to rope Dr. Roman into  more sessions.  But we really  appreciate your time, Dr. Roman, thank  you so much.
12:58:01 Just a reminder this session has been  recorded, so we will post it.  Feel  free to come back and view it and  share with colleagues and families.   There's great information here.  Thank  you so much.  I'm going to go ahead  and give you the closing code.  You  will need this to enter into the  evaluation that will be sent to
12:58:03 you.   052021.
12:58:06 I will put that in the chat as well.
12:58:10 One more time, 052021.
12:58:17 And that is the code for today.  Just  a reminder there is no opening code.   That's the only code.
12:58:45 Just by way of announcements, next  Monday on May 24th, we will have an  OT review, a sensory processing with  Lisa Rickett one of our staff here at  TSBVI.  Literacy considerations with  Judy Endicott.  No session on  May 31st, since it's Memorial Day.   Our final session of the school year  on June 3rd, it's one of our  collaborations with
12:58:51 the western  regional early intervention  conference, which means that it will  start an hour earlily.
12:58:56 This one is entitled unilateral  hearing loss in children, what do we  know and where do we go?
12:59:18 So this will help with -- as we teach  students who are deaf and deafblind.   Please make sure to check our Coffee  Hour website at tsbvi.edu/coffeehour.   One more time, that code 052021.  And  I do just want to end by saying that  we have officially decided that we are  continuing Coffee Hour next year.
12:59:22 And that will be Mondays at 3:00 p.m.  Central Time.
12:59:33 Is when we will do Coffee Hour.  So  just one time a week, but Mondays at  3:00 p.m. Central Time.  So I know as  you start planning for next year, make  sure that you mark that into your  schedules.
12:59:46 All right.  Thank you, everyone!   Thanks so much for joining us.  Thank  you, again, Dr. Roman, we really  appreciate you and your time and Sarah  and Lynne for wrangling our questions,  that was a big job today.  Thank you  so much.
12:59:51 Everybody have a great almost weekend!   We're almost there!