DISCLAIMER: Raw, unedited transcript from webinar. No guarantees are made for the accuracy of the content.
 
>> Hello, everyone. This is Peggy Malloy at NCDB.  It is noon so we will start. This webinar is identifying and serving students who are Dead/Blind  with formal language and - - an evolving level in our field. The presenters are Robbie Blaha,  Cathy Lyle,  and Matt Schultz.  Before I turn it over to Robbie  just a few housekeeping items. All phones are muted. If you need to mute or on mute press star six. There will be a time at the end to ask questions. You can write questions and comments at any time. The presenters will check in on those periodically. I wanted to let you know that if you scroll up to the top of the chat pod the third item there there is a handout for the webinar. It is in the pod. Also we will be recording and archiving this webinar. Keep that in mind when you post comments. I will start the recording now. 
>> I will turn it over to you, Robbin  - - Robbie.  
>> Thank you to everyone who signed up and are attending today. This is a topic that Kathy, Matt, and I have been grappling with. We look forward to sharing some things that we think we have learned and then more importantly, we look forward to partnering with other states and projects to serve these kids and fill in the gaps we have in resources for this group. 
>> Looking back, the process, we have been working on this for a number of years. Probably over five years. It made me reflect that in the past the beginning of our field as we know it today was galvanized by the rubella epidemic. Most of the children when we thought about deaf blindness we thought about emerging communicators. A lot of the strategies and resources have centered on this population. We have the opportunity and privilege from time to time to work with individuals with Usher syndrome. When we thought about the field of deaf blindness we thought about communicators and individuals with usher syndrome who were proficiently communicators. This exception - - there are exceptions but by and large it feels like this to us.. We started noticing a change about seven years ago. In Texas. The referrals we were getting for on sites started really shifting to congenital proficient communicators. This was a shock for us. We considered them - - we called them for lack of a better term, the academic kids with Deaf-Blindess who were in general education.  They were challenged by it. We noticed this is unusual we had gotten so many of this. Across two years it seemed like most of the referrals I got were this type of kid. We were going what is going on?  Why is this happening?  
>> I want to talk about the census. We noticed that the kids were changing. We went to the census which we should have done sooner. We underutilized the census. We are very fortunate in our field to have a national child count with so much data to be mine. - - Mind. We found that 32 percent of our census and speaking of this in Texas. Were kids who were not on the alternative state testing. By 2017, we still had 23 percent. It varies. Even 23 percent is one in five. That is a big change. What we noticed is that we started looking at the characteristics. What is true about each of these students we are getting referrals on?  In Texas, they had proficient language. None of the referrals had an intellectual disability. They were served in regular classrooms. 80 percent of the day. They were on regular or modified curriculum, but not alternative. They were in general educational curriculum. These were the general characteristics we noticed. We started gathering a profile  about what they had in common. How would you describe these kids?Cathy,  I think that you also noticed a change in what you were seeing and also the sheer numbers. Is that correct? 
>> Yes. The way that we got interested in this is that we started getting more referrals for the proficient communicators. Looking at our census not the most read one - - recent one but the one before. About 50 kids in Minnesota were not taking the alternative tests. They were in schools for the deaf or schools for the blind or in mainstream settings. It became more and more apparent to us that we needed to think about these kids differently. 
>> And Cathy was it congenital?   Was it acquired?  
>> I would say we have some of both. 
>> One thing we did was contact Mark at NCDB who runs the national  child can't. In 2016 he ran reports for us out of the data that were extremely useful. He showed us the different etiologies. We did notice a shift in etiology. We had many of the congenital kids were [Indiscernible] syndrome or prematurity. We had kids that were more neurologically intact hitting the school systems. This is a trend that probably will not go away. In Texas and I think Kathy you can let us know but in Texas the leading syndrome is charge and the other leading causes prematurity. We have a shift that this is not an ideology that will decrease over time. We are sitting up and noticing that we may be seeing a shift in our field in terms of providing technical assistance. And so here is what we learned. We listed the needs. Every time we went on the site we listed the needs. Across the board's these two always have occurred. Every single on-site is that access to information and pasting is a nightmare for these kids. It is speed of light instruction. It goes very rapidly. Even though we look at the technology the kids have. They did have low vision aid. They did have assistive listening devices. They did have FM systems. They had a lot of technology. The problem is trying to synthesize that during the course of a 50 minute class. All of these things, trying to find the page number with a stand magnifier. Trying to follow an interpreter with a CCTV. All of these things were actually complicating. There was so much to Drago. The pace was they could not keep up. They were behind and then they stayed behind all day. And another thing that popped up with every one of them was concept development. These were intelligent children who had a lot. They were introspective and they were interested. In every case we talked with the students and we wanted to hear what they had to say. We want to get a perspective on what they are missing. We will observe and see everything that was covered and speak with the student. It was amazing what they didn't realize happened. Also that they did not have underlying concepts. One student - - there was an example of slow oxidation in science which is rust. The example that they used for rust was looking out in the fields may be traveling in the country you may see old trucks or cars covered in rust. Literally I had a student that had not seen rust. Their garage was very well organized. Nothing is rusting. He didn't know what rust was. The example that would've clarified for everyone else with slow oxidation was she didn't understand the example dude to lack of incidental information. This was repeatedly true of every student we worked with. Over time Matt and I have taken this on and we have collected 12 things. They pop up for the students. And we got these by going in and watching for the problems and then writing them down and we had a list and we made #'s. Every time if I would go in an on-site I would put a hash mark. We had a list of what the problems were and we made a list of the 12 most common problems. When we go on an on site we take the list and say which of these things are true about the student?  It puts us on the same page immediately. We can circle the ones that need intervention the fastest. Over times we had these 12 things we - - that needed to be discussed. Sometimes it wasn't perceived as a problem. When we started thinking about it it started surfacing as one we did not pick up on. The next thing we did was turn and try to find resources to address these issues. Your handout is the 12 items. This is of typical needs for this population. We found that in some items like the transition, there are a lot of unique things that need to be considered. That has been really well covered. There is a lot of good stuff out there. [Indiscernible] who did the work with the southern states who did work with adolescents for so many years. Some of that it would be nice if it was in one place. Others on these there is nothing. Nothing to really assess and intervene with. It gave us some gaps to work on. We do have this checklist. We were operating on this to identify these needs quickly with teams and students and also in terms of organizing resources. Before we do the case study, I have one quick thing. Let's say what we would like to do is put a face on these kids and talk about three students. - - Originally Matt and I were calling these academic students with Deaf-Blindess  but it's not an appropriate term. It's the need to see all kids as academic students as report. Cathy calls them proficient communicators.  I felt that was a perfect term. You have emerging communicators and proficient. That became the term that we are using. One of the things we need is a definition. What do you put in that definition?  I think proficient communicator is a characteristic. Now we will talk about some kids. Cathy you have a student you will share with us? 
>>  I do. Just to take on a little bit to the introduction by Robbie. We were finding more and more kids who were proficient communicators. I agree,  we felt like we had a really good handle on the emerging communicators and had a bag of tricks. And we had a routine of what we would do when we did technical assistance. When we got more and more referrals on these proficient communicators, I started doing research and I found - - I contacted several agencies that serve this population. What we found was they had a lot of medically-based information and great information about genetics and what doctors need to know. Really new information about serving the students in an academic study wasn't there. One day I was on a call with Robbie, and we were talking about a different topic.  I brought up to Robbie,  what is Texas doing with proficient communicators?  We are finding more and more needs. I felt like we hit the jackpot because of course Texas is always ahead of the game on anything in Deaf-Blindess.  Robbie talked about this IEP checklist that her and Matt had been working on.  My involvement with the webinar today is one of support and interest. I would not say I have a lot of really great, new information to share. I do have a student that we followed this year. And things that she followed the profile that Robbie talked about a little bit. I will discuss the first student and  that will highlight a second student. I will tell you about Cameron. She lives at home with her parents. She has an older brother who has special needs. When I think about Cameron I think about pink and purple and sparkles. She is a happy, bubbly child who loves to try new things. She has a rare syndrome called OFCD, which is ocular facial cardio dental center. There's only about 20 families worldwide that have a child with the sender. It occurs in less than one and 1 million people. It applies to girls only. There are several eye anomalies. Conventional - - congenital cataract single,. These kids also have a heart component. I have a short one and a half minute, very unprofessionally prepared video of Cameron. I think you will see how cute she is and how she fits the profile. 
>> [ Video Playing ] 
>> I don't think she could be any cuter. 
>> Cameron had congenital cataracts. She wears contacts with glasses or sometimes just wears bifocals. Her corrected vision is 20/60 in her left and 20/100 in her right. She has mixed hearing loss with bilateral tubes for middle ear dysfunction. She has a mild to moderate sensorineural hearing loss. She is aided and uses an FM in school. One consideration that Robbie and Matt and I talked about was medical complexity. I suggested it may be another item for the checklist.  But Robbie doesn't want  to add another - - a number 13. So we will see how we can fit it in. 
>> It can be 14 or 12. 
>> In talking to her mom, her mom talked a lot about her medical complexity spirit she documented 122 doctors appointments in a calendar year. She averaged that out to one appointment every three days. Her mom and her dad feel a responsibility to make those appointments outside of her school day so to not interfere with education. That really causes a lot of problems in their family. She has to line up child care for her other child. They often times have to work on homework while waiting in doctors offices. This family, they require the kids to read at least 20 minutes a day. So they have to fit that in. They have hired a private tutor to work with her on her written language skills. She has a community  intervener that supports academics and social emotional skills.  Her mom explained there isn't time for play dates because they are trying to keep up academically and also with appointments. Her mom's question to me is appropriate and she says how do we fit it all in? They feel a lot of stress in their family just to be a typical family. Because of two kids with special name - - needs they balance the best they can. Sometimes they feel like a lot of other families that they fall short. I did speak with her school team. I did technical assistance there. Her teacher of the deaf and teacher of the blind is one person. She has licenses in both areas. We don't have a teacher in the Deaf/Blind program in Minnesota.  The best we can do is a licensure. Cameron recently had a three-year [Indiscernible] and it showed that most of her skills were at grade level. She had some issues with making inferences and she definitely requires more time to do things during the school day. They give her extended time for tests. She will leave the classroom with the teacher of the deaf and teacher of the blind to do pre-and post test teaching. She does take tests out of the classroom to cut down on visual and auditory noise. The basic attitude is she is doing great and she doesn't have any problems. While that sounds great, and the parents are very happy about that, her mom wonders what would happen if she pulled the support from home so they could be a regular family?  She feels like they have a hard time keeping up. They don't want Cameron to fail. They really don't have a solution for this. They can only imagine that as she gets older and progresses in the grades, she will have a harder time with more academics. They are thrilled that she is keeping up now. They tried to be purposeful with Cameron's time which I think is commendable. In looking at the checklist consideration. I tried to jot notes about places that the checklist applies to Cameron. Her mom reports issues with concept development. Especially working on homework or reading chapter books. She told a cute story about Cameron reading a book she likes the book Pinkalicious. The girl in the story wanted to become a flower pick so she sprayed herself with perfume. Her mom asked Cameron why she did it. Cameron could not make the connection. She had no clue why she would do that. Her mom thought that was interesting. As much and as well as she is doing with academic she still does have gaps in her learning. When I talked to her about the concept development checklist that Matt and Trent think - - Robbie are developing . They thought it would be a great way for her to track at home. When they spend time in academics, she thought it would be great to be able to provide Cameron to - - access to some of those that she doesn't have currently but she is excited to share with the school and also to have a way to track her progress and figure out where the gaps are. Another area was number two on the checklist. That was modify the curricular content. That was a great idea. Cameron is sensitive to this. She doesn't want to look like she's different from anyone else. She absolutely refuses to do reduced assignments. Although it is a great idea, it is not something she is comfortable with. She may have to change her mind in the future. At this point, she wants to do all the work that the other kids are doing. Item number six, is technology needs. As Cameron said, she uses a E-bot. She did not talk about her iPad but she has a SmartBoard in her classroom. They use a screen share with an iPad so Cameron can access the board and they use handheld microphones. They have an FM with two mics. One of the issues they ran into in the classroom was when the teacher was talking and the  intervener wanted to clarify something she couldn't always hear.  They have a creative dance that when the teacher is off and the  intervener is on and when the Bs four is on the teacher is off.  It takes some coordination. I think that Robbie will talk about this later with  Hunter.  The technology needs cause stress. At this point Cameron isn't totally independent with making sure all of her equipment is up and running. So the  intervener  helps her set up but once Cameron enters middle school, I would imagine all of those things will be her responsibility. She will have to post things and carry things and get set up. That is something they want to think about for the future. Another issue is number seven. Stress. The implications of stress. When I talked to the classroom teacher they don't report that Cameron seems to have any trouble in this classroom. When you observe her she looks like she is just one of the kids. She blends in very nicely. Her mom reports when she gets home she takes about an hour or 45 minutes to come down from the day. She needs to spend some time alone and regroup. Sometimes they see refusal. Sometimes she is crabby. Sometime she has crying episodes for reasons they can't explain. Cameron tends to be a nailbiter. Other times they have seen complete meltdowns and they really don't have a big explanation for it other than the pressure of school must have been a lot and she doesn't have an outlet. The impact of Deaf-Blindess, number eight,  is her mom reports when she is in a noisy environment or there is a lot of visual clutter she tends to shut down. She is not exactly sure how much the school has noticed that. Again the school reports she does a great job at school and participates in discussions. She seems to be doing a great job. How much of the impact there is they don't have 100 percent of an idea about. Number nine, social skills. Cameron doesn't always know how to join in. She uses the  intervener to be  the bridge and bridge that gap. If she wants to play with some and or break into a conversation, she is not always sure how to do it. At second grade I think it was totally logical for the  intervener to help her with that.  Again these are social skills she will need to develop as she continues to grow. Another one that goes along with self advocacy. That is a work in progress for Cameron. She will at times asked to see herself in a different place. Other times she is pretty happy to sit in the back of the room and not probably have total access to what the teacher is saying. The last one we talked about was the mom wanted to emphasize the need for formal training. Minnesota does have a formal training program that we are happy about. It continues to be very successful. For some reason the school district this year decided that Cameron's new  intervener didn't need to take basic training and they chose to informally train that  intervener on a day-to-day basis.  Which didn't really work out well for Cameron. The  intervener made great effort. I hesitate  to call the person an  intervener since they did not have formal training.  That is what the schools calling them. Since they didn't have a basic understanding of the needs of students who were Deaf/Blind. There were big  gaps in the beginning of the year. When her mom found out they chose not to be involved in the formal training she was very upset. She didn't understand the rationale. She had to do with a lot of the repercussions of the  intervener not knowing what to do. The school made great attempts at training the person  but we really saw the need and the reinforcement for formalized training. I believe after the year that they put in with the school,  the  intervener is leaving the program.  She will go back to school and get her Masters degree. They have signed up their person for next year. They understand the need for a formalized program for  intervener training.  It was very exciting for me to get this checklist from Matt and from Robbie. We are pleased to go out and used  this checklist. 
>> Thank you, Cathy.  You paint a great portrait of Cameron. I want to throw out an informal survey. If you can type in the chat pod yes if you know a kid like Cameron. If something Kathy said in her description if you have identified in your technical assistance or your careers as an educator or your experience as a parent. I am just curious. We are looking at the pod and multiple attendees are saying yes. Absolutely. I am glad. That is the feedback we get in other environments. I want to keep the ball rolling and paint another picture if you will of a second student. Her name is Reese.  She is the beautiful young lady you are looking at. Reese finished her sixth grade school year. She goes to school  in a regional program for the deaf just outside of Dallas Texas. She has CHARGE  syndrome and has vision loss. She is a profound sensorineural hearing loss. She wears a cochlear on her right side. She is a fluent ASL community to. She has an  intervener in her classroom.  All of her academic classrooms are within the deaf education department in the school. Her math teacher and science teacher are deaf education but content area specialists in the core academic subjects. They are fluent signers. She goes outside of that deaf educational grouping to attend regular classrooms in music and PE. 
>> I met Reese at the beginning of the school year while doing technical assistance with her team around  our students with Deaf-Blindess pilot project.  As a part of the pilot program, we provide training and work with teams on an ongoing basis. I got to spend a lot of time with them. Boy did Reese teach me a lot about these kids.  When we first sat down to discuss Reese and how she was doing they said great. She gets As  and Bs pick she's doing  better than a lot of her peers. The further the conversation went, the more interesting information emerged. One piece I thought was interesting was that they said she memorizes facts. She doesn't generalize information well. She learns the information she needs to for the test because she is highly motivated to do well. We are seeing that personality characteristics throughout these kids. It comes up time and time again. They recognize that it is a problem. Yes she is doing well on her exams, but we are worried. Seventh grade is harder. Eighth grade is harder. The scope and pace of instruction picks up. If she keeps memorizing and not learning she will be in for - - it will cause a lot of issues for her learning. They pointed out that memorizing doesn't move well into conversation. She can't keep up with her peers when she is talking about topics that they care about or academic subjects. That the area of conversation and socialization is really impacted. They also pointed out that because of her difficulty that she has in communicating or having prolonged conversations, that she doesn't have a lot of actual friend. She is popular. People like her. Reese is in a good mood a lot. She is fun and peppy. When they asked her who her best friend was it always was Jimmy. Everyone thought it was someone from her church or her old school. It took a couple days for everyone to figure out that it was Jimmy Kimmel. Reese and her sister watch  Jimmy Kimmel every night together. So there's a concept gap. She doesn't know what it  - - a friend is pick she thinks that Jimmy Kimmel is a friend. She doesn't have the skill to make friends.  They identified these skills around academic issues but also social issues that speak to connection. They were concerned about how those problems will increase in time and impact her as an adult. The team agreed to sit down and talk with us around a tool we have in working on. It's called the requisite concept evaluation. It is the process and it starts by the team getting together and sitting down to talk about the student, and looking at - - in Texas we have the Texas essential knowledge and skills. Texas is framework for standard curriculum in each subject area and each grade. Outside of Texas it is known as the common core. We looked at the Texas version of Common Core in the area of social studies which is broken down into sub areas of citizenship and culture. Also economics, geography, government, history, science, technology, and society, and social studies. We picked that area because we thought that there is a lot of concepts within those topics that impact how Reese relates and understands the world around her. Her community, the society and culture. They thought it was an area she needed help it. We sat down as a team again the deaf Ed teacher and her  intervener who is with her side-by-side all day long and knows her very well.  She sat down and looked at the Texas essential knowledge and skill areas in social studies beginning at kindergarten and just up to fourth grade. When they looked at the framework, we would have conversations about what it means for a kindergartner. I will show you a more in-depth look at that in a minute. They also came up with a battery of questions that could extract the information from Reese to gain - - gauge what her into standing - - understanding of the concept was but also to figure out where the gaps were and the conceptual ceiling was. What they discovered was this smart kid, who had As and Bs, her conceptual ceiling was across  all of those subsets second-grade tops. The complexity of concepts from 1st to 2nd grade is huge. Then you go from 2nd to 3rd grade and it gets big fast. They would start at kindergarten and go down the list and say yes she gets that no she doesn't get that. And then it became no way does she get that. Gaps were identified in the area and the ceiling was identified as second grade. Through this process a plan came together. The evaluation of the standard curriculum along with the teams discussion, important conceptual themes began to emerge within the area. These themes were then discussed in how Reese is interest relates to them. It allow them to prioritize some instruction and make an instructional plan. I will explain what that means. The second grade peak in citizenship and culture that they felt like she wasn't getting. This was her ceiling. Was that there is a characteristic of good citizenship as exemplified by historical figures and other individuals. That was the first one. The next one was identified customs, symbols, and celebrations that represent American beliefs and principles that contribute to our national identity. So through this discussion the team had, it came out that Reese has a lot of interest in historical figures. Specifically, historical figures that have been assassinated. So people like Abraham Lincoln, John F. Kennedy, Martin Luther King, Robert Kennedy, you guys know the list. Those were the people that she was most interested in and drawn to and wanted to talk about. They said if she is interested in these guys, let's figure out a way to focus on her interests knowing the learning will be more efficient and more valuable to her. And then made a plan to accommodate that interest. Their idea was she could pick whatever she wanted if it one - - was one of those five that was fine. She picked the figure to research and the teacher and of this - - in this case it was the deaf education teacher. Take did a question template to guide the research. She thought it was very important. She wanted to control it but also help Reese get the conceptual framework of what they were looking for and where does it fit?  What characteristic does Martin Luther King demonstrate and how does that characteristic relate to the national identity. She needs columns and HR to fill out to help collect - - connect the dots. Then she would report that information back to her classmates and they would report it to her. They asked the class would get together and build a timeline over that historical. So they could see when the March on Washington happened in relation to John F. Kennedy's inauguration or whatever the events were. To put the events in context. The reason for that was to teach them the concepts and help them conceptualize and put the facts in clear containers if you will. But also to allow students to have successful conversation where everyone knows the content. We are talking about historical figures. Who is yours? Tell me more about them. The kids can have exchanges and start to form friendships because the team identified that she couldn't maintain those exchanges to form a friend and she need to. They thought they could teach her that while she is learning the academic material. The third piece of the instructional plan extended to the home and family. It was to have each student go home and interview a family member to get information about what members of their family were doing in 1968. So they could report back to the class and add that information to the timeline. This connects the abstract concept to the person and family and personalize it. Again it provides an opportunity for additional conversation. Knowing a lot of the times because of the scope and pace of instruction is moving so fast these kids miss opportunities for conversations, side conversations with their peers before class or after class or in the hallways. Also they don't always go home and initiate all of these conversations about what they learned with their parents. And providing structure that gives them an opportunity to have those additional conversations around the course content, can be done through modified homework assignments. And so this next slide connects everything I just said to those items on the checklist. Item 1, was address requisite development through assessment and instruction. They use this concept, evaluation to identify gaps and ceilings and make an instructional plan. That plan allow them to modify the curricular content, item 2. They developed a standard based IEP. Item 5 is the modifications to homework assignments.  So Cathy was speaking about how homework is a problem. It is a problem that adds to their  incredibly high levels of stress. Here is a unique solution for a homework assignment that may be will not be as stressful but will be valuable. And then item 9, consider the need for direct instruction. A creative plan to allow for social skills instruction to happen during the academic time.. That would be delivered by the  intervener.  Her role maybe looks a little different with a kid like Reese than it would for some other students. Reese's   intervener role , part of her job is to help Reese connect to her peers to initiate conversations and maintain the topics of her peers and to build those social skills necessary to meet - - make lasting friends. 
>> I wanted to - - first of all, thank you, Matt for doing that. The assessment we call it the RCE is an assessment process. We developed it because we knew concept development was a problem for each student.  Where do you find the concepts they are missing?  Of all the concepts you can have, how do you prioritize? We found by using the general curriculum,  we can start in preschool and ask questions up until we hit [Indiscernible]. When that happens we call it the conceptual ceiling. When we looked at those, if you don't get those early concepts, all you can do is memorize. And what we found with these kids is if you explain it, they get it like that. A lot of times it is a pretty quick fix if you know what to hone in on. Since the core curriculum is all interrelated, if you can find some of those essential basic concepts, it will make a big difference. Part of the problem is we identified which kids were finding - - we were finding. We only have the state test to search for them. We are not catching the younger students. The kids who were second and third grade. It's amazing to me what they don't know. One student we worked with covered the tunnel. It is that underwater tunnel between the mainland and the island. The British aisle. She had been in a tunnel before so she understood the tunnel but she didn't know what her dad did for a living. She didn't know what a bank was. She was very clear on the tunnel but did not know about the banking system. This child is an ASL user. Her mother is [Indiscernible] and her father is an accountant. She knows a lot of language and has a lot of stuff pick she missed that piece. Maybe she was too short to see over the counter when they were setting up bank account. It's weird what they don't know. It's weird what they miss. You assume they know quite a few things. When you start systematically testing for it, you find important gaps. That is what the RCE processes four. We systematically test each kid.  Hunter.  We had to include him. We have formed an advisory board in Texas to help us figure out what to do to respond to the needs of these kids. Of course we had to have Penny McGowan. She was our out-of-state consult. I think Hunter does a very good job here.  It's a very short clip. I think Hunter can do a good job of explaining some of the things that he deals with.  I would like you to notice when we come to the classroom scene, what he is doing versus the other students. 
>> [ Video Playing ] 
>> Thank you. Quickly we want to save some time at the end to talk as a group. I am going to move through this pretty quickly. One of the things we found we have to assess the gaps and concepts as they relate to the general curriculum.  We evaluated and develop ways to fill them in. With these very bright kids. These kids learn by analogy very well. They are good researchers. If they know where to focus. Rather than try to do a fill in the blank worksheet at night to find the gaps and let them build that important information. The other problem with this is when do you do it?  There is no time. In class, you are seeing they are writing down the things you think they can get. When do you have the discussion about them?  It has been our experience these students need at least's one - - at least one sometimes too. Today. To keep up. To actually understand the assignment and start to them. In some districts we created an elective. You can do a district based elective. We called it skills in deaf blindness. We needed that our a day for our staff to work with these could to get them up to speed. These were a couple problems. The first and second item is when do you do this during the day?  This is a big sticking point for these kids. The other one we wanted to talk about was stress. 
>> Fortunately we work in a field where people like Dr. van Dyck have taught us so much about the impact that stress has on every student with Deaf-Blindess. Kathy Nelson has done a lot of work in that area too. Certainly these kids are no exception.  Maybe their educational needs are met in a different environment but they are also strongly impacted by stress. The tales are different. Kathy's description of Cameron is different. As opposed to getting upset and hitting objects. It expresses itself differently but it is there. And what we are finding is that it is there in alarming levels. We are concerned about the impact it is having on the kids. As they internalize the stress and also the impact it has on the challenges they are presented with every day. Let me describe that. The type of stress these kids experience can be described as early and prolonged. When you experience stress in the early age of development in prolonged periods it's called toxic stress. Toxic stress has a profound impact on the development and functioning of the prefrontal cortex. That is where the executive functioning capabilities are housed and where they take place. Executive functioning you think of a team of air traffic controllers that oversee all the functions of the brain. They help you deal with confusing things and unpredictable situations and unpredictable information. It is where the cognitive processes are navigated through things like attention control. Impulse control, working memory, cognitive flexibility, the ability to reason and problem solve and plan. All of those very cognitive functions are tasks we ask these kids to do constantly. In every moment of their instructional day when they are in these settings. And we have teams that say those things aren't an issue for my kid. They do really well. It's hard for them to concentrate and sit still for this long. It's hard for them to follow directions. It's hard for them to rebound from disappointed. They get a C on a test and that throws them off for three days. Some of that could be personality based. A lot of it can be the result of this toxic stress that is impacting their executive functioning. It is important for us to recognize that stress can be impacting the ability to learn. The reason why it is a number seven and we want to gather information from our partners across the country and families and from these kids is how can teams better plan to monitor their stress levels and to find ways during the school day to get them the support they need to not feel so stressed. The good news about toxic stress is there is a lot of good information out there on things that can be done in the environment to help these kids feel less stressful. It really directs us a lot to how important strong relationships are during their school day. There is a good reason why a really good  intervener like those  ones for the other 80 percent but why these kids would benefit from an  intervener. Some  one that would have a strong bond and could be a trusted person that would guide them and navigate them through the complex learning environments. 
>> When we talk to the families and kids, this came out. Every kid we have seen so far has been described as a perfectionist by their family. To - - they are working so much harder than any other kid. When all those other kids were strolling in and visiting. Hunter has to get all of his technology and get to class and set up and boot up and get ready to try to gather information which he described can be very difficult. No other kid is going through that pressure. None. We don't go through that kind of pressure as adults. We have a third grader that every Thursday she threw up because there was a spelling test. No third-grader should be that stressed out. When they hit middle school it gets more and more complicated. They are socially aware enough to have a sense of shame. They are embarrassed by not being able to keep up or find relief visiting someone at lunch. This is a big thing. It's one of the ones on the list. I already mentioned that build time in the day. That is a logistical challenge. Another thing and Cathy brought this up about training. When we looked at  related service staff you are looking at additional interpreters or the  intervener. Let's take the interpreter first.  Many of them have interpreters in the classroom but they are in there with other students in the class that utilize the interpreter. They need the interpreter to be within 350 they can't be within that three feet and serve the other student. This begins the conversation of access. You may need another interpreter in there. This is a tough conversation. If you don't go there the student doesn't have access in the primary mode for instruction. That is a special factor. Beyond that it is ethically not okay. The  intervener.  The role of the  intervener is so different with the students . It is interesting but valuable. They need training. For example, one of the students we had who was an academic student had the same issue that Hunter did with transporting all of his equipment. They had to put it on a rolling cart  that he pushed down the hall. So his instructor wanted him to learn travel and rows he had to move all of his equipment and get near a plug and plug everything in and get everything ready to go for each class. If you have an Bs for doing this and helping with the transportation,  it is a huge help. The  intervener took on the technology responsibility because in real time,  the student couldn't get a magnifier out to look at the page number. So let the  intervener assist.  It's in terms of real-time, you cannot use all of those devices fast enough. And you need someone in there to make sure that the student has access to instruction. That alone is pretty difficult. The current activities right now - - right now Cathy, Matt and I are working on this  list of IEP consideration. We would like to see if other people are finding the same things.  We started developing some strategies and resources and assessing concept development. There are others that we have gaps in. If we could find a way to address this as a field it would be awesome. We need to have a definition for this group. May be based on common characteristics that we can use them to search the census to identify them. Also some of these kids don't make it to the census. I have had a number of people say this is not what I would consider a Deaf/Blind kid because they are locked in on an emerging committee cater.  What we found is they do share the characteristics of kids that we've been used to. They do have problems with access to information. There is a pacing issue, real-time is speed of light. There is gaps in learning. We know this is part of the Deaf/Blind learning style. What we are finding is  Deaf-Blindess is kicking in  and they do need support to overcome it. This is a new group. We have had the privilege of working with Usher syndrome kids in the past. Certainly they faced these issues. These congenital kids coming up, who are hitting kindergarten, we need to find a way to locate them and start some of these interventions earlier. What we are doing now is reaching out to our colleagues in the field. We would like to build the collaboration with everyone for two things. One is to identify. Let's find a way to identify these kids through characteristics. Let's consolidate the resources so we have one stop shopping that we can maybe organize them around these needs. And find out where the gaps are so as a field we can start collaborating on filling in the strategies and resources. I had an opportunity to talk with Linda McDowell and Sam Morgan about is there a way through NCDB we could continue as a workgroup?  And kind of see who is interested and maybe work together as we move forward. We are writing a new grant. Maybe there is something in there that we can divorce resources to. And so, also no one has the size of information like NCDB.  Is there a way we can find one spot for resources to help us go further?  I think that is our list. Now we will open it up to discussion. I don't know how to do it. 
>> This is Peggy. I would say if you can press star six star 62 un-mute. - - * - - Star six, to un-mute. Then Robbie, Cathy, and Matt  we have a couple people on the phone so you might want to read any comments anyone posted. You - - 
>> Would you consider a listserv just for this population?  
>> That's an NCDB question.  
>> This is Peggy. What we were thinking of instead of a listserv would be we would do a group. At I will share my screen quickly. I think that a lot of you have been involved in groups on the website. If you go to the homepage, in order to be in a group you have to have a profile and you can see this screen in the upper right-hand corner where it says hi, Peggy. If you don't have a profile, it would say make a profile. It's easy to get one. Then there are number of groups to be involved in. I created one this morning. It doesn't have anything in here. It is called proficient communicators. You would see that in your list. You would get in here. We would have information on the homepage that would talk about how to contribute thanks. And then also there is a forum where you can have discussions about definitions and things like that. I think what we were thinking before was that Matt you would have people say if they were interested to contact you. 
>> That would be great. 
>> This is Kathy Miller. I am participating by telephone. I just wanted to register that I am here. I am very grateful to be able to participate within the next [Indiscernible]. I am Deaf/Blind myself.  I anticipate acquiring some computer skills training within the next six months or so. I am going to try again to check in on my profile and participate more in groups. I do definitely want to be part of this group. Thank you. 
>> I'm sorry your name is - -?  
>> That was Kathy. 
>> Thank you, Kathy. I see project reach. This is Michelle Klein's bag of tricks. That is wonderful. And also I see Molly. She is our Helen Keller national Center rep in Texas. It's wonderful to have her involved. Thank you, Molly. 
>> And Robbie can I ask you to read the comments as you look down the list. At first we had  - - Stacy are you there?  Also rows Debbie Sander said she would love to be involved in further collaboration. [Indiscernible] from Virginia we had a few kids who are similar to the students you described. We had the same struggles trying to convince the team. I know NCDB has stories of parents  and children who share the experience. Maybe it can be done for this group of students. Just a thought. It's a great thought. Molly says I would love to be part of this group. Linda McDowell points out we are getting some willing and eager group members. Then the project says can you tell us how we can request to join the group?  Can we answer that?  
>> Sure. 
>> You are saying that people could reach out to you. You can have them email you. 
>> That I can add them to the group page. 
>> You have to have a profile on the site. Please remember that. 
>> Is this a closed group?  
>> It is. 
>> Once you have a profile on the site and you reach out and let him know. Although people who are here I can add I know many of you are on there. But - - it was something just to let you know once you have a profile, Matt or I can send you an invitation which you will get to join the group. 
>> Cindy Robinson says great presentation thank you for sharing the discussion. I would be interested in the workgroup. 
>> Patty in Pennsylvania says I would like to be part of the group and would love to share how we built instructions for our son. That would be great. Robbie mentioned Patty work with us around some stakeholders and  her and Hunter's information is so helpful for other families to hear and schools to hear that great solutions can be done. They have been done. 
>> I think this is hard for parents who have these children because they go to the Deaf/Blind gatherings and meetings of people say  it's almost like your child isn't really Deaf/Blind or you're lucky.  They are grateful. But their child is still struggling. I think sometimes it's hard for the parents to find a community. These kids ride. There is so much that we are finding common across these kids that it would be a relief for parents to be able to talk to each other. Also I think for the kids to talk to each other. This is a group that could get together. 
>> We mentioned there is a lot of great information about what helps toxic stress. Having a friend helps it. Finding ways we can connect kids to each other would be incredible. 
>> Sam Morgan says great info. What a logical first step to be - - to be developing a concept such as development?  
>> I totally agree. 
>> I think we can figure out a way to help guide those priorities with that IEP checklist.  And so maybe we can explore ways with Peggy to get that list in their and figure out a way to add information. 
>> I would love to hear what other people think. Is there stuff missing?  Like the medical appointments are full of chaos. How many a week did she say?  One every three days. That is unbelievable. Having the workgroup look at these and can they be consolidated or reordered would be great. 
>> Rows wants to be added. Maurice says I'm interested in exploring the concept of proficient as a spectrum and where is the line between emerging and proficient communicators. I think it's a fascinating and challenging issue. We agree. In fact Kathy brought that up.. 
>> Kathy told us the characteristics we found in Texas where that none of the kids we had referrals on had an intellectual disability. Well Cathy says I have students that have that label and are proficient  communicators. Is that a good characteristic to put in their?  
>> Kim asked to be added. Tracy Evans says I'm interested. I thought a place to start to look at the key etiologies where these issues may be more prevalent. Usher, CHARGE,  NF, brain cancers. Debbie says all of the information I'm looking at how to more appropriately serve these kids. Patty says the Deaf/Blind strategies are the same just individualized.  Molly McLaughlin says please include me thank you. 
>> Cathy did you want to respond to anything? 
>>  I think it's exciting. It's work that needs to be done. 
>> Project reach shared some emails. Thank you for doing that. Linda says the works fits well in the proposed initiative area of assessment, planning, and instruction. We look at what we know and what we need to know for all Deaf/Blind students. 
>>  Well said. 
>> While they are typing, do you think that the - - using the Common Core, do you think this is a way to look at where the gaps are?  This is just a path we took. I would be curious if we are going down a rabbit hole on this. 
>> If there are people that are interested in talking about using that curriculum framework, to identify gaps and feelings I would be happy to be part of that conversation. 
>> This is Cathy. I will make one quick comment.  Matt and I and Robbie had a discussion about that my career started in the field of deafness. One of the tests we used to find out where kids were deaf was in the [Indiscernible] general information section.  And when I compared your Common Core Standards to the Woodcock-Johnson general information part of the test they are similar.  I think it's a great correlation. 
>> You don't want to teach to a test. If you are teaching social studies and science and all the areas that are sometimes incidental learning it is a great fit. 
>> Matt and I talked about maybe people would want to look at their own Common Core Standards. Whether we could do a comparison of how does Minnesota compared to Texas compared to someone else?  To see if we can standardize it a little bit. 
>> That would be welcome. Right now the RCE is being used with the pilot for a teacher of  Deaf/Blind. We are using it with different teams.  It's helpful to have real people and a real kid around a tool. It will be tricky. We know concept development is a huge issue. It is not really - - for the emerging kids, [Indiscernible] did a wonderful assessment. And we had these kids. They are missing important facts. I will look at the Woodcock-Johnson. Thank you, Kathy. That is a great idea. 
>> Maurice comments he thinks we can learn from VI and how they integrate the expanded core into the instructional day. I was saying to Matt on the last call, this is like the ECC for deaf blind kids. I totally agree. 
>> Even expanded core. VI has an expanded core. Although compensatory skills are critical. When did these kids get a shot at that with their day?  When you fit it in?  They need it. 
>> 
>> Cathy can you read Linda's ?  
>> She says in spite of what I said earlier, seeing the connection of the suggested work being linked to the work in the API initiative, like all initiative work, there is overlap with initiative work for early identification, family engagement, qualified personnel, and transition. Attending to all the needs of these students and their families. 
>> Yes. 
>> Krista asked if NCDB could start a closed group discussion for these kids?  That is a great idea. 
>> This is Peggy. I think it's something we have to think about. We haven't had a group for kids before. We would have to think about the ramifications of that. I think it might be since a lot of kids might be on Facebook already it could be easier to have it there. 
>> Linda says in spite of what I - - 
>> Exactly. Maybe it is the new ECC. 
>> Stacy is helping me with my email. I don't email myself enough. I thought that was the one I typed first. Either of those should work. 
>> Patty wrote that may be a group for the kids could be something they could do on Facebook. That's a great idea. 
>> Hello. I just wanted to jump on as we have just a few minutes left. I want to thank you all for attending. Also for Cathy, Robbie, and Matt for the presentation.  The conversation afterward was great as well. I am excited to see where we go from here. I think this is exciting work. I am thrilled we could have you join us. And that you came to the webinar. We do have a few minutes left. However you want to use that is fine. Before we sign off, I wanted to remind everyone that next month we will have another webinar I think falls in line with the students. I will put the information for that in the chat part - - pod so it is there. There you go. It will be on Wednesday, July 18. The same time. It is about individualized instruction in the expanded core curriculum. An introduction to student portfolios and project taste learning. Rachel who is a TBI and scholar goes to the University of Pittsburgh will present. If you would like to join we will have it in this same Adobe room. We would love to have you join us. I will hand it back to the three of you. Thank you so much. 
>> That sounds great. 
>> Cathy any final parting words? 
>>  On just busy here trying to keep the light on in my room. 
>> The light. It keeps going dark. 
>> We appreciate very much everyone who signed in. Thank you very much. We look forward to working on behalf of these kids. 
>> I feel like it's an exciting start to some new work across country collaboration and it sounds fun. For kids that need it. 
>> Over and out. 
>> Thank you. 
>> [ Event Concluded ]