>> Robbie Blaha: Good afternoon. We're here at TSBVI. We're doing a training today on sexuality education for children with deafblindness. Today's topic is Issues in Sexuality and Deafblindness. I'm Robbie Blaha. I work on the Texas Deafblind Project at Texas School for the Blind and Visually Impaired in Austin, Texas. Today, we're going to be focusing on... students with deafblindness who are having emerging communication and who need extensive support to have social interactions. Currently, a third of the deafblind population in Texas is now very academically tracked and taking STAAR M. And still, we have two-thirds of our population that have emerging communication and need more support. So this is the group we're talking about today.  We have a couple of resources we want to show you. These primary resources can be found at the National Coalition of Deafblindness. I think most of us know it as DB link. And DB link has their information organized by topics.  And the first link will take you to the NCDB Library, and if you scroll down, you'll see a series of folders, and all of these folders have different types of information on sexuality education in individuals with deafblindness. Some of the articles, we have now come from SENSE, which is a network in the United Kingdom that does a tremendous amount of work with individuals with deafblindness, including adults. So we were really happy to pull their articles in, as well. At the top of the link -- at the top folder, if you click on that link... that will take you to a book called Introduction on  Sexuality Education for Individuals who are Deaf-Blind and have Developmental Delays . And if you click on Print... the book will download. This book was -- the development of this book was paid for by OSEP, and it was peer-reviewed, and it does have the IDEA's stamp from the Department of Education in Washington. I wanted to let you know that just because sometimes when you bring books on sexuality... to parents or to school districts, it might make them feel more comfortable knowing that this is supported by OSEP. Okay. The book has about seven topics that are covered, but today we're going to talk about three topics. One is Modesty. One is Appropriate Touch, and the third one is Menstruation. I am happy to answer questions on other topics... today, but due to time I just picked these three, because typically these are the three we get most questions on. And... when you think about sexuality education... a lot of typical programming focuses on birth control and dating and social skills. And... that's not what we're going to cover today. So a lot of people were acting like, 'Well, where's the sex in this?' And actually, when we say sexuality, what we're talking about [inaudible] that from the public perspective, can be perceived as a sexual incident. So... we're going to be talking about those types of issues today. So what we're going to do is, on each of the three topics, we're going to watch some video clips. And the PowerPoint will come up along with the video clip. The clips are fairly short, five or six minutes. So we're going to go over some information and stop and open for questions or comments. >> Modesty. Society's perspective. Strict unwritten rules about appropriate dress and behavior.  Typical kids receive instruction in modesty as a part of growing up and children with deafblindness deserve and need the same.  Honor the problem.  Communicate. >> One important area of sexuality education for children with deafblindness and significant disabilities is modesty. In today's culture, there is a really interesting spin going on I think, in America, in terms of modesty. On one side, we really advertise, use sexuality and scantily -- scant clothing to sell cars and mustard and diet cola, and I think that we are selling clothes now in malls for preteen girls that 20 years ago no one would have thought of putting on a child to send them to middle school. So that's going on. And yet on the other side, society actually has some very rigidly enforced, high standardized rules about modesty, that everybody pays attention to. When you leave the house, every morning, there are certain parts of your body that are covered. And if these aren't covered, you're going to get arrested, people are going to be scared of you, you're going to be asked to leave the restaurant, you're going to be sent home from work, you're going to have trouble with making friends. You're going to be perceived as slightly dangerous. And I think that... even though... people in general have always been very accepting and very supportive of children with deafblindness when you go out in public -- you know, people help you with doors, they... if they know some signs, they come up and visit with some of the children. I think they are very accepting and kind. But all this goes away -- and what it is not forgiven, is if you are in an elevator, one of the students starts shucking their britches. That's not okay! That scares people! And I think that they are not going to forgive and forget that experience.  Our kids, I think, have very innocent reasons if they disrobe in public or pull their shirt off in a parking lot. I think they're hot from the weather. I think maybe their clothing is chafing them. I think they have very innocent reasons initially when it starts. But... they are not perceived as innocent in the eyes of the public. They are held guilty for their actions. And so I think that it is very important that we teach rules of modesty to these children, and I think that we should have every right to assume that they will learn these. You know, we teach this on an ongoing basis to typical kids. We will say, you know, 'Your shirt is a little too tight,' or 'If you are going to go get the mail, you need to put something else on. You cannot run down to the mailbox in your swim suit. That's fine for sunbathing in the back yard, but if you're going to talk to the UPS guy, you really need to cover up.' Or we tell kids, 'Oh, close the door when you go to the bathroom, sweetie.' And we give instruction all the time to typical kids. And our students have the right to the same information and guidance. I think that we just have to think about how to make it understandable for them. 
>> Blaha: We picked modesty to begin with, because I think... unintentionally a lot of the students with deafblindness -- if they're uncomfortable in their clothes, they want to take them off, or they want to stand on the sidewalk and adjust their -- you know, bra for 10 minutes and things. And it looks funny in public. And I think it puts people off. And so we picked that to start with, just because it's such a common problem. Starts out kind of innocent when they're young, but 10 years later it's... offensive. And I think it makes it really hard for staff and families to take their kids out in public if they're behaving this way. 
>> Children with deafblindness learn concepts based on how they are treated. 
>> Blaha: So I think that's one way people do learn about modesty. They learn from how they are treated as they grow up. They are guided by people around them who give them information about modesty and expectations. And the other way they learn about it is by watching. We're very imitative and we're very curious about the way other people act. And this country really copies -- has certain things that everybody does. The way they sit, the way they walk into a room, there's just so many things that people typically do that are highly standardized. And... what goes on for children with deafblindness, however, is that a couple of things affect the way they learn about modesty. They can't pick up information at a distance. Typically if it's more than two feet away, for many of our kids, it just isn't happening. It's not on their radar. So they don't see how other people dress and move and sit. They don't notice that people go to the bathroom and close the door. They're not aware of these things. And... it's serious that this kind of avenue of information is blocked from them. And another problem that these kids have is that sometimes the way we treat them doesn't really convey the information very well either. Sometimes we treat these kids as if they had different rules.  When a child is going to the restroom, a child with deafblindness, sometimes staff members will just stand in the bathroom and chat with the door open and not really thinking of this student's rights. If they notice that their blouse is buttoned and maybe the buttons are crooked or misaligned, they will just come fix it, even though they're in the hallway at school. They'll just quickly re-button. And we would never do this to a typical student. So the deafblind child is getting either information omitted because they cannot see what's going on, and sometimes they pick up information by the way we treat them that gives them a mixed message on what's important in terms of being covered up. 
>> They may not be concerned with social skills.  
>> Blaha: Another piece of that deafblindness, I think, that affects their ability to develop concepts of modesty is this is not a population that's overly concerned about people's opinion. They -- a number of these kids, are not aware that people have opinions of them or they don't care. It's kind of like people are optional. So given that... modesty is important, given that... it is difficult to learn if you are deafblind with significant developmental delays -- it's difficult to learn this incidentally or accidentally the way the rest of society picks up that information. So I think that it's just very important to make a concerted effort to teach these rules on a day-to-day basis to these students.  
>> Build habits for a lifetime by building modesty into routines.  
>> Blaha: So what are some ways we can teach lessons of modesty to students with deafblindness? One thing I've learned is teach lessons that are good for a lifetime... because once these children learn something, it's very hard to change it. Sometimes you can't get it out with a crowbar. It is in them. It is the way they relate to the world. For example, if... you have a toddler who's just finished with their bath, it's not unusual for a toddler to run around the living room nude. They're so cute and everybody thinks they're adorable. And it's just, they feel fabulous, and then nine years later, it's just not the same for the student or the kid, because people no longer find it acceptable. And all of a sudden it goes from, ‘Oh, he's so cute,’ to ‘Get back in that bathroom!’ And he doesn't understand what changed, why the rules changed. So I think it's important from the get-go that we not... undress kids unless, for example, if they're going to the toilet that their leg is touching the toilet, that's when you start to undress them. I had a mom tell me that, with her daughter, her jeans had -- she liked jeans that had buttons. And so she would have to unbutton her before she could go on the potty. And as soon as her daughter saw the potty, she was ready to go. So the mom started unbuttoning her clothes in the hall or, you know, five, ten feet away before she got to the bathroom. And as this little girl, whose name was -- as -- dressing skills got better -- started unbuttoning her pants and she unbuttoned them way in advance, the way she'd always been treated. And they were at Dairy Queen and her mom said by the time -- got to the bathroom, she was pretty much disrobed. And so just thinking about, ‘What will this look like when my son or daughter is 16?’ It's important at that point to start building in modesty in your grooming routines.  Only disrobe by the potty.  When you're through with your bath, put a robe on.  If you build these into the caregiving routines, this is what they learn. And I think it takes a lot of extra time to do this, especially when a child is little. But investing the time at the beginning will save you so much, so many problems and meetings and concerns with staff and other family members as the child matures. And they will mature.  
>> Hold each other to high standards. Watch out for mixed messages.  
>> Blaha: I think in addition to teaching lessons that last a lifetime, another thing to consider is that you are modeling for other people. When you treat your child this way or when you treat your student this way, you're setting a standard for other people to respect them and go the extra mile to preserve their modesty. I had a student who got an allergy shot every Wednesday afternoon and I walked her down to the clinic, and there was a nurse there that typically -- I hadn't worked with. And... the student got her allergy shot in her arm, and so the nurse pulled her blouse up and took her arm out -- right there in the clinic! And there were people there. There were other students and there was staff. And the door to the clinic was open. And I said, ‘Shouldn't we go to the bathroom to do this?’ And she said, ‘That's okay, she can't tell, you know, anybody's here.’ But I was thinking, ‘Well, everybody else can tell she's here.’ And having -- making a point to the nurse to -- ‘No, let's cover her up and move to the bathroom,’ I think that's important to do. Because the less aware these students are of modesty and their rights as a human being to have their modesty respected, the less aware they are, the more aware we need to be. We're more responsible for that... for honoring that modesty. And I think if you don't, I think that you're sending a message to people that these kids have different rights or a different status, and I think that can't lead to anything good._ >> Blaha: Just when we're thinking about habits that last a lifetime; I had a few things come back on me. When I was a house parent at the Deafblind Program at School for the Blind in the 70's. In the summer we would put out little swimming pools -- those plastic swimming pools -- under the trees and fill them up, and let the kids play in the water in their underwear. And... we did that quite frequently in the summer. And then... years later I was a classroom teacher there. I had worked in Dallas for a while and came back and worked with the deafblind at the School for the Blind, and I had taken three of my students -- we were near UT campus where Little Field Fountain is -- and one of the original kids -- a little girl -- was still in the Deafblind Program, and she sat down by the fountain and took off her shoes and socks and just started disrobing and putting her legs in the fountain. And I thought that's my karma! Because I taught her, if you're in water -- you know -- it's OK to swim in your underwear! And she had not forgotten. And so... I kind of -- I paid my dues that day trying to get her dressed and back on the bus with that great fountain there. Another thing that I think is part of an issue with the way we treat the kids in modesty -- is I think it sends messages that make the kids more vulnerable to abuse. If they seem to have different rules than other people, I think that... people who have that mentality of exploiting children are more likely to feel safer in exploiting a child... who seems to be unaware of modesty or that people seem indifferent to the students. I think you have to show that you value them. You protect them! And that you do see they're as important as anyone else, and not kind of second class citizens. Because I do think that that makes them more vulnerable, if they live under different rules than other children.  
>> Avoid triggers that lead to disrobing: tags on the back of shirt, being too dressed up, et cetera.  
>> Blaha: A fourth thing you can try is to be proactive before you go out in public. I think... most of the time I've seen problems with modesty in public. It copes because the kids are not comfortable in their clothing, and this might be sometimes because we're going somewhere special, and we dress them up in something really cute and they -- all they know is that they're in something new and maybe not comfortable, and they spend quite a bit of time adjusting it or trying to get out of the clothes or take the shoes off, and once the shoes have come off, and the socks come off -- and everybody starts getting uncomfortable. And I think if you're going out in public in a new outfit or in a costume like for Halloween, it's a really good idea to wear it around the house for a while so they get used to it. So you won't have the problem that, you know -- your cousin's wedding of your... child taking their clothes off for being miserable and twisting around.   
>> Provide modesty vocabulary in concepts.  Teach the sign for private.  Make a list of private places for an individual child; his room, the bathroom, et cetera.    
>> Blaha: Another technique that would be -- that's really useful for these students is teaching the word 'private' and concept 'private.' Because these students -- the ones -- the students with severe developmental delay sometimes... have trouble with abstract concepts; you to need to make it very precise for that student. For example, say you have a student Catherine and you want her to -- and she has a tendency when she gets out in public if she -- just adjusting her underwear at great length -- or one student I had had an issue about pulling their underwear; they liked their underwear up, and on the outside of their clothing. And what we would talk to Catherine about is we're going to fix your clothes in private, and we had made a chart that had her picture of you know... her face, and then a picture of private places in her home. She had two private places at home; the bathroom and her bedroom. We had a private place at school, and so we started... working with her on this, before it got to be a problem. So she had the concept of what this meant, and so if she was doing something that was inappropriate in terms of her clothing we could come up and go, 'That's private. Come on I'll help you.' And it was non confrontational, I was an ally, we were just getting her to a good place to fix her problem, she's just trying to get comfortable. And having this as an intervention made it calm, and she immediately understood where she was supposed to go.  Another thing that helps with this type of child when you're working on the word privacy and the concept is, do a little reconnaissance before you go to a restaurant, or to the mall, or to the post office, or wherever you're headed that day. And take some pictures so they can know in public where is their private place. 'We're going to eat Mexican food, and... we're going to get a Coke. We're going to get a taco. And we're going to go to the restroom while we're there and here's a picture of the restroom. This is a private place.' Just making that a package, so they're more inclined, when you're there -- if something comes up to go with you so you can get fixed. So I think teaching that concept within the context of their routine and their world, I think it's very likely that they can understand this and the vocabulary that goes with it.    
>> Wait means yes.    
>> Blaha: Another important thing to teach is the word 'wait,' and the concept 'wait.' Wait means yes! And if you teach this concept throughout the day, a thousand ways, it's going to really be your best friend. If you get into public and they start disrobing... you can go up and say wait, and to them that will mean something. The way you teach this, is throughout the day you're -- maybe there's your student there and another student, and so we're going to have something to drink. And 'I'm going to give it to Beth first. You're going to wait.' And then pour it, so that they learn that the word wait means yes. It's not going to be very long, especially for this population, they can't wait very long, but you can just start teaching that word. Something's going to happen and then you get what you want. And if you had put this throughout the day and -- for example, on their calendars. If they have an activity they really like -- if you tell them, 'We're going to do this first, and then we're going to wait, and then we're going to do yours.' So that they know that wait means yes and that's it's going to come. I found this to be a very effective intervention in public. To go up to a child who's starting to disrobe and say, 'Wait. We're going to go to someplace private. You're hot! I'm going to help you. Let's go.' And using that word has really -- it buys you time, and that's important because once the momentum of stripping takes -- gets going it's very difficult to be positive and help reengage that student without vocabulary and concepts that they understand.  
>> Blaha: The reason we first got interested in working on sexuality education and deafblindness is that, you know -- we were not proactive. We were reactive. And we did have... kids stripping in public. And once that happened, it was really difficult to back up and fix it. So, hopefully by doing these things, by teaching wait, by thinking about the clothing you're wearing, by putting modesty in routines, you're being proactive so we're not raising another generation of strippers.  
>> Don't create a stripper! Stay calm if they start to remove clothing in public.  Chronic stripping needs a behavior plan.  Complicated clothing is difficult to remove.  Communication rather than confrontation.  
>> Blaha: If you teach 'wait,' 'private,' as you go, and in routine -- this is something that they can learn and it will be very useful to them in terms of intervention. I think using vocabulary keeps you calm and keeps them calm. The less confrontational you can be the better.  The person who taught me this was a student I had about 20 years ago. We were riding in a school vehicle and she was in the back seat. And she had on a cowgirl shirt with pearl snaps. And she liked to take the shirt and just -- she just loved the feeling of pulling the snaps apart. And... she pulled the snaps apart and started waving at the cars who were going by, because she liked to wave at people. And they pulled up by the driver's seat and were telling us there's a problem in the back seat. And I looked and she was -- you know, in her bra -- unsnapped! So we pulled over and we were kind of strict with her about that. And she had done it innocently, and the way we intervened... was so charged, I think, that she began thinking, 'This is interesting!' And began to see it as a behavior that has power. And it did morph into a situation when she would just start stripping in public because she knows it works anywhere. 'I can make people stop!, I can get attention!,' or 'I can get out of things!' And she would do it if she didn't want to do something. She would just begin to strip -- which completely refocused everybody. And we were the cause of this because of the way we overreacted. So I think the most important thing -- even though you're worried about them being exposed in public -- you've got to be calm.  You have to think ahead. Write a behavior intervention plan for the student. I think that the staff is going to have to know how to respond... if the stripping starts. You know, one person work with her, everybody else keep going. And... one of the things I like about thi s -- behavior intervention plans -- is that they have a proactive and reactive section. So proactively you can make sure she's dressed well, she's got enough coverage, that she's engaged in the activity. And... reactively, if she starts... taking her clothes off, you're prepared because you're calm, you know who's going to be with her. We also started dressing her in more complicated clothing when we went out. She had this really cute little leotard -- ballet leotard -- with little overalls she wore with it, and a vest. And it helped, because there were layers that she had to work with... that gave us a little time in terms of getting her to a private place. One thing that we really realized that was important for her is that she did not have a way in some situations to say, 'No.' And I think if she -- we realized that if she had a way to go, 'I don't want to do this,' or 'Can I do less of it?' or 'Can someone do it with me?' or 'Can I do that, instead of this?' we had fewer confrontations with her. She didn't know another way to get out of things. That was her only strategy. And everybody uses the information that they get in this world to help themselves, and she used the information that, 'Stripping gets me out of stuff', rather than negotiating. And so going back as part of the BIP, we really worked on helping her negotiate. And, again, with symbols that can -- if we had a symbol for something we wanted her to do, she could say, 'Wait,' and negotiate and put another symbol in -- that she would like to do this than this. And it made such a huge difference to her.  And dealing with this as an issue about information -- and that they need more information. And we need to just give them more supports. Having that kind of mindset rather than something that's oppositional, really helps it de-escalate the situation. Otherwise this can become a lifelong problem for a student. And it really then... makes it difficult for staff and families to go in public with them.   
>> Modesty, a quick summary.   
>> Blaha: So I think overall we just need to remember that society is -- for all outward appearances -- society is fairly strict about modesty.  They don't forgive!  They will be afraid of the children.  That these kids have trouble learning information the way that typical kids do, because it's too far away to get on their radar, due to the deafblindness. They may not be invested socially enough to care about pleasing people. And sometimes the way we treat them doesn't give them good information about the way they act.  We need to really know that these kids can learn about modesty, that we need to put it in their routines, we need to teach for a lifetime and be proactive about the clothing they have. We need to give them supports and information, like 'private' and 'wait.' And... I think that... we have every reason to hope that with this... conscious effort that these kids can learn some skills that will really help them fit in.  
>> Blaha: One thing I didn't put in the summary, I do think it makes the kids safer. I also know in terms of long‑term placement in facilities -- this kind of behavior is really going to put them at risk in some placements in the future. So it is not a small problem. Life long. So at this juncture, I wanted to check in with the audience. When people come to... this particular topic, it's usually -- or it's been my experience when we do these trainings -- that people have a fairly specific reason that they selected the topic of sexuality and deafblindness. Usually there's something going on with one of their students or situations in a school and they are consulting with the school and trying to help them. And so, if there are other topics or specific questions you have, I'm really happy to talk about them. I really don't think at this point -- I used to be afraid to ask that. You know But I've learned that ‑‑ that we'll all live through any questions. I think a lot of it -- I don't know I think it's hard for us to do this because... talk about sexuality and disability -- it wasn't anything that was ever covered in any courses that I took... in training. And I didn't really even consider it an issue. I started out with elementary school kids. And I didn't really think about sexuality. I was concerned about language development and all of the things with deafblindness, you know, increasing their signing and this. Then I switched to middle school students, I moved to Dallas and worked with middle school students. I'm telling you that's all we dealt with. We had a pregnancy, we had kids that were very vulnerable... kids. We had -- they hit puberty! And I don't know why I didn't think that was going to happen -- I don't know why I thought they would be eternally children, but they aren't! And we had even a number of kids that truly didn't know male or female. They really didn't have a gender identity. And it seems that once we got to middle school I look back on all of the times I could have done a better job with elementary kids and not taken so many shortcuts -- maybe with modesty -- when we were trying to get everybody through the bathroom before we went out to recess and stuff. And I... look back, and I thought -- you know -- I get it now! I get that they were always male or female. And that they always needed a gender identity, and needed social rules that help them fit in. By the time... after I taught three years in middle school -- I came out a believer that this is something that should be an IEP. Kind of...  'If I ignore it, you endorse it.'  And I think it's kind of difficult! I know you -- we're really busy all day. You know -- practically -- you hardly have time to go to the bathroom yourself all day! You never -- the days are just really fast and full of stuff. And it's hard to think about how to put this in a... an IEP. But I think it's... part of... definitely Expanded Core Curriculum. And for kids with deafblindness -- they are so at risk for missing all of this essential information that's so subtle -- from their perspective. And I used to kind of worry about parents. I think what are they going to think if I bring this up. Let me tell ya, they are relieved. They are relieved to have someone to talk about it because they are worried about their kids. And some of them... the families can't even go out together. One person stays home with the child, the stripper, and the other family goes out. And it really divides the family. And I think it's something that we should put on the table... to start talking about. And so real quickly... I'm kind of curious -- was there a particular reason any of you picked this topic today? Is there some issue that you would like us to address? This is your time. I'd like to make good use of it. If that's the case, you can either unmute, ask, it's fine or you can type it in ‑‑ I will give it to you again. Go to todaysmeet. Some of you are already on it I see. Todaysmeet dot com TSBVI TETN. And... type the question. And that will be great.. [silence] next topic we're talking about is appropriate touch. This is a real biggy... with children with deafblindness. Who are -- you know -- they're space invaders and they are very tactile. And you put these things together and it can make... a really tough trip to the grocery store with a couple of 17 year old deafblind -- kids with deafblindness. So that's the next thing we're going to talk about, Appropriate Touch.  
>> Appropriate Touch  We're a non-contact society.  Gathering information as a deathblind person involves touch or close viewing. 
  >> Blaha: Another topic that's going to be really important to cover in sexuality education is the topic of appropriate touch. There's sort of a conflict going on between our rules about touch in society, and what is an effective way of gathering information for children with deafblindness. Our society has a lot of very strict rules about touch, especially in America. We're considered a non-contact culture. This means that the ritual of touching another person is highly, highly standardized and obeyed. For example if... you are passing someone in a store and you accidentally bump them, even though you barely -- you didn't hurt them -- you just accidentally bump them with your elbow on their arm, you immediately- - immediately say, 'Excuse me. I am so sorry!' Or both people turn to each other and go, 'Excuse me.' That's considered enough of an offense that both people apologize to each other. We're extremely, extremely conscious of space. There's... actual spaces that -- and you can measure in inches -- where someone you don't know typically stands, versus someone you know very well can stand. And our kids can be sort of space invaders, because they're trying to gather information, and the only way they can do that is get as close as possible to what they want to see. And they use their hands as eyes to verify and gather information -- verify what they think they're seeing, they verify it through touch, and maybe pickup additional details. So you have a society that really wishes you wouldn't touch them, and a group of wonderful human beings who gather their information through touch!   
>> So has this ever -- have you all ever had any... or worked with students who had problems along these lines? Or have you been in the position of going in after the fact, after it's become a problem -- as a service center person and trying to help deal with this? [silence]  
>> You're going to make me do all of the work, aren't you? I know that, I know where you all live. Okay, going on to the next clip now.  
>> Strategy  Remember that the way you touch them is how they will touch others.  
>> Blaha: Another thing that can happen... sometimes we give misinformation to our students with deafblindness by the way we touch them. I think that... sometimes we -- because we're familiar with them that we take liberties that we would not take with a typical child. For example if you hear a hearing aid squealing, rather than asking... to touch the hearing aid, or asking... and showing that where you're going to touch before you touch. It's very simple to go as a teacher to go, 'Is that your hearing aid?' And fix it. So a child with deafblindness what they experience they may not see your face kind of zero in on them and look concerned and that you're looking toward their ear. They don't get this information to anticipate a touch. And all they know is suddenly, someone has touched their ear -- with no warning. It's kind of like, 'Incoming!' And... we tend to do that. We also... I think, without meaning to... give random affectionate -- or pay attention tactfully to them in a way that's confusing. For example we might walk by and say, 'Oh her mother just dresses her so cute! Look at that sweater!'  And what they have is a series of unexplained and un... unpredictable touch going on.  So how are they to learn about boundaries and asking... first, if we don't treat them that way? 
>> Strategy.  Teach signs and concepts of asking permission.  Give proactive information.  And be an ambassador for the child. 
>> Blaha: I had the opportunity to work in Thailand for a brief period of time, and I noticed how... a form of politeness and greeting that the Thais do is this... this gesture. And it really made me start thinking that if I would 'ask,' before I touch a child, two things could happen.  You're modeling this for them -- that you -- before you touch something you have to stop, slow down and ask. And by modeling this -- and teaching them to do this to people before they check their -- maybe they're someone has a neat pair of sunglasses and they're just dying to see them. Or maybe they really like the side of sunglasses and want to see if there's some kind of design there. If they' will just stop and ask... the general public -- that gives you a moment as an ambassador to go, 'She loves your sunglasses and she's asking if she could look at them.' When people are asked -- when these kids ask people are usually very, very nice about it. They'll take the glasses off and say, 'Tell her I got them on sale," -- you know, and they'll point out details. It's amazing the difference that the response between being asked or having a child just lunge at and grab the glasses. What these kids learn is sometimes -- if we just jump on them and say, 'No, don't do that!' They get this very confused message.  Let's think about that scenario. They're curious about the sunglasses. They reach up and take them because they want to see them, and we overreact at that point and say, 'No!' And... really get kind of upset and embarrassed, and try to get the sunglasses back. Well that kind of heightens the tension -- there could be a little bit of a struggle. One thing that could happen is the child learns, 'If I want to see something, I've got 5 seconds. I've got to get in there and get it, because they're going to try and stop me!' So you can kind of get that kind of negative behavior going on. We had one student who was very curious about sandals, especially thongs -- those rubber thongs. This child was very interested in them, and wanted to know what people were wearing. And because we didn't take the time... to teach her to ask about the shoe... she... we just said, 'No, don't do that. Don't bother them. We're going. We're busy. Don't bother. Don't bother.!' ... She learned just to -- if someone came up -- she would drop to the floor and grab their foot. And we taught that behavior. And having people grab necklaces, belt buckles, shoes -- these are issues that get into body parts that the general public don't want people lunging at them, and grabbing in these areas. And you can cause this to happen, if you have a child who's curious about some things... and doesn't know how to ask.  For a child who's really motivated to check out sunglasses or check out shoes, a good technique is to get a story about it. To set time to discuss it. To say you love glasses, to have several pair of glasses there to really discuss it with them. Tell them, 'We're going to go out today. You might see a person who's wearing sunglasses and you feel curious. You feel curious about the sunglasses.' And talk about how you 'ask' to see them. It's important when we get children with deaf blindness out into our typical culture to remember our role as an ambassador -- to explain their approach to life to people. And I think that... one thing you gain by teaching the ritual of asking is a few minutes to step in and do that explanation for people. I think, as long as individuals know that you know what's going on and you can convey the child's intention, they just need to know someone's in control and this isn't going to like spiral into some kind of -- you know -- ordeal for them.  
>> Strategy.  How to get other's attention.  
>> Blaha: Another area that's very important to teach is a lifelong skill is, 'How to get other people's attention.' Sometimes these kids don't know... how to get someone's attention or touch them. There are parts of our bodies that are considered very neutral, like the back of the hand, maybe the elbow of the shoulder. This is a part of the body that's acceptable to touch when you want to get someone's attention. And by treating the kids this way, that's one way they're going to learn it, because you model it consistently. Another aspect of it though -- this is again once again one of those concepts you have to specifically teach to help them do. To help them reach out to touch someone. How they gain people's attention. Let them have an opportunity to this again and again. Practice with staff. Practice with families and peers. This is something that's well worth putting in the IEP, as well. 
>> Blaha: I think that I heard a term one time called ‘touch clutter,’ C-L-U-T-T-E-R, clutter. And I think that these kids suffer from it. And that is... they can't see us coming in to touch, and we don't ask. And so we're always adjusting their clothes, fixing their hair, checking things out. And they get all these random touches that they're not -- they don't know not to do that to others, because of that. It takes more time, but I really think this idea of asking... before you check a hearing aid -- tell them, ‘I want to look at your ear, your ear’ and asking them -- [inaudible] asking. And I was really guilty about this, so I feel like... that this idea of modeling the behavior is just very powerful. I think as an intervention, to teach them how to touch others. The other thing I learned is that when I go out in public -- and I really think these kids need to go everywhere -- I really had to run connaissance [phonetic] -- is that the word? Reconnaissance? Reconnaissance. I had to watch out for situations where I thought they were -- you know -- really going to move in on something, like a shiny hair clip, you know. So on some kids -- I know -- ‘Okay, she sees that clip, and it's all... it's all going to start happening right now, because she's got to have that clip.’ And so being -- if I stop and tell her, ‘No. Stop. No!’ then that kind of escalates stuff. So I've learned to -- when I'm in the heat of the moment -- be an ambassador and tell someone that "She loves your clip; that it's so cute! Can she see it? She can't see it. Can she get close?" The people are very accepting of that, because there's just some situations I know that that kid is going to look at that clip as long as they want, no matter what anybody does. And we could do this the easy way, or we could do this the hard way. And I think being an ambassador and knowing that we can, in classrooms, encourage kids to touch, bring stuff up, look at it -- we're always encouraging them to explore stuff. When they go out in public, they can't switch that off. And... if suddenly, you know, we're all over them one time for doing it and then encouraging it the next -- they can't deal with that kind of mixed message. It's really going to build some animosity. And I have seen kids learn, that they've just got a very short amount of time, and they've got to make a break for it and get a hold of that object that they want to look at. So I think it's kind of like an ambassador between two cultures. You're troubleshooting. You're explaining. You're kind of setting up these real quick treaties -- ‘Can we agree that you're going to look at this clip? And then we're going to say thank you and give it back?’ And I think that that's part of... giving real-time information to these students. Any questions? Or comments? 
>> Strategy.  Stay calm or you will teach groping.  Provide information so they don't have to steal it. >> Blaha: Often times the inappropriate touching... is about gathering information. And we had one young lady we worked with who was about nine years old, went home for the summer, came back and she had already physically developed and was wearing a bra, and she was very confused about this. And so, she spent quite a bit of time looking down her blouse and then she started patting people's chests, to see if they had the same thing going on with their body. And so if she would pat women on the breasts, they would turn and avoid it and tell her, 'No.' And if she patted men on their chest, they would just Pat her back or something, but it didn't bother the staff. So she was getting very inconsistent messages about this. And all she was doing was trying to figure out , 'Who has these besides me?' And it got to the point that she would stand by a water fountain -- if she saw a water fountain, she would stop and stand there for a minute, hoping somebody would bend over to get water so she could poke them -- because she was kind of a short kid. And It became... to the point... no one wanted to get a drink of water around her. And she became more aggressive. And when she got upset she began to grab people's breasts and chests, to get out of stuff. And then it became sort of like she was sexually aggressive. It had all begun she was just trying to get information. So this is an example of the importance of taking time to explain... explain things. Let them know how to get information without stealing it from people. And rushing and grabbing people. What worked for her -- was helpful for her is everybody backed up and started just discussing bras. They got a catalog that had underwear in it. And they discussed slips and panties and bras with her. And talked about when you do laundry, it's better not to dry your bra, it's better to hang it up. She started getting more information about the bras and things and... in a way that was natural and calm and she calmed down about it. And we also sorted pictures for her about who wears what and who doesn't. Who has breasts? Who doesn't? Again, this is a piece of gender identity she's really entitled to. And once that happened, she became so much calmer... about it and very matter of fact. She didn't have to steal the information anymore. 
>> Robbie Blaha: Ok, I have a video clip that I'd like to show you, and I think that -- you know, I had said that we were going to focus on kids today that had emerging language and needed a lot of support negotiating life and social interactions. But I do want to show a video clip that shows how universally this is a problem. Gathering information is a problem...for deafblindness. As a result, this 'stealing information' kind of concept -- more than one student I've worked with with deafblindness, when they become interested in -- some of the kids that are more social and more academic get interested in clothing and wearing the right thing. And I think, in general, they're more concerned with doing the right thing. And um... I see this with the kids who are more academic. And a number of kids are pretty... apprehensive about their clothing. They knew that if they were in a math group, and there's three kids in a math group, and two of them have one answer, your answer is different. Chances are, if you're different, you're wrong! And I think they kind of think this 'different is wrong' kind of mindset. And so, with the clothing... they wanted to -- they thought they had to wear the same thing other people were wearing. Like, if their teacher is in a skirt, then they're all going to be angst because they're not in a skirt, that they -- that they wear slacks. That this idea that 'different is bad.' Also, because they're curious about what other people are wearing. I mean, they're as curious as we are! You know how we go somewhere, we kind of look around to see what everyone is wearing. We kind of sneak peeks to see, you know, how people's hair looks and what kind of shoes they have on. We kind of gather this information, because I think people are naturally curious, and they are, too. So, this one young lady -- who is a very fluent signer -- there was some discussion and concern on the team, because when someone sat down next to her, she would put her hand down and touch kind of -- furtively just touch their leg -- and um... or when she went by them, reach out and touch, and just kind of feel things about them, like their earrings. And she didn't ask! She just would do it. And people were kind of ignoring it. And I think when you ignore something, you are endorsing it! And... this is a behavior that is not going to be comfortable for people. It's going to put her at risk for offending people, and it's going to make her more vulnerable for people to touch her inappropriately. And so, this idea of getting information, so that they don't have to steal it, we decided that we need to actually teach her, literally, that it's okay to wear different clothing, and also to be dressed slightly different -- you know, different variations within a setting is fine. And also, the names of clothing -- particular things -- so that we can tell her, later. If she knew what these were, you could say, well, 'The teacher has on a blouse with ruffles.' She doesn't know the word ruffles. This is a student who asks me, 'How do you spell 'necessary? I can never remember how to spell necessary.' And you know, it was not like she wasn't -- she didn't have horrible language, but she didn't know what the word 'ruffle' was. And what she found out, whenever she got a piece of new information [ Inaudible and distorted ] And I think information was really important. [ Inaudible and distorted ] There's stuff they don't know! And the stuff they care about... it's pretty amazing! Anyway, so this is a video clip of a lesson about clothing.  
>>Blaha: These are called -- they stop here. Wait, wait, wait, we're not doing my legs yet. Goes down and stops here. The name is 'three quarter,' three quarter. Yes. It goes and then it stops! Does not go down here, it stops here, okay. And my pants -- I'm going to stand up to show you. You can sit. [ background sounds ] The name is... [ pause ] Capri, Capri pants.  Love it! Oh, she liked that! Okay. They go down... and stop. So they hit you about right here. On that, yeah. Yep, that's right where they hit you.  [off camera] 
>> Where is that? 
>> Blaha: Kind of mid-calf. 
>> Okay. >> Blaha: She was kind of reaching down to show, yeah. They're not short like... oh, they go on. They're not long. All the way down my leg. No. They go down and stop here. [ pause ] Can you spell it yourself? 'I'm independent, I can spell!' Okay. C A P R I, yes, Capris, yes. So now let's compare Mimi and Ms. Blaha. Stand up Mimi. Stand up! Okay, check it out.
>> Mimi: I have, have what? [ pause ] They stop here. Means what? 
>> Blaha: What's the name of it? Yeah. 
>> Mimi: S H O R T. 
>> Blaha: Short. 
>> Mimi: Short. 
>> Blaha: Yes. Okay, so... So Mimi has on short pants and Blaha has on... Capris. Natalie! What do you have on? Well I know but what's the name of them? Blue jeans.
>> Mimi: Blue jeans. 
>> Blaha: Long, long blue jeans. I have long blue jeans on. Yep you do. All right. You do. Yes. That's right, I see, they go all the way down to your ankles. I see that. Yeah, that's right! So it's different, different, different. Blaha, Capri... and Natalie... long and Mimi short. Different, different, different, different, different, yeah! 
>> You know it's an interesting thing when you're teaching tactile learners. You have to get tactile with them. And I kind of want to talk about why we didn't just bring in a pair of shorts, a pair of Capri's, and a pair of long pants and put them on the table and talk about... talk about them individually. One of the goals was that she start getting names for clothing, so we could describe the clothing to her so she would know what people are wearing without touching it. But I think it's hard to really conceptualize clothing unless they're on a body -- about really how long they are and where they go. I think it's important. So we set up a lesson, and we told her we are going to have a lesson about clothing. And we set up a time for it, and it was a private lesson, and it was with females. We also cleared it with her family. I think you should not do any instruction in sexuality education without having it in the IEP and approved by the family. I don't go off as the Lone Ranger on anything. This is something that you need to -- it needs to be open, above board, and in the IEP. It is appropriate instruction! And so we set the lesson up, and we told her we are going to show you what we're wearing today and learn the names. The second part of the lesson was, 'If you meet someone, that you ask. That you ask to touch or ask what they are wearing.' And I think teaching both the names of the clothing and the idea of asking -- if the student like this, who's -- you know she... uses contracted Braille, she's a good signer -- this is about deafblindness. It's the information they want and they can't get another way! And so we have to see this not as 'groping,' but as a need for information. And that you solve it by calmly giving information so they don't have to steal it, and also that people are comfortable with them... and things. I think this resolved itself very quickly with her. 
>> Strategy:  Teach greeting rituals.  Provide additional characteristics.   
>> Blaha: A third area to really focus on when teaching appropriate touch are greetings. I think that everyone who works with a student with deafblindness needs their own personal greeting to do with this child as they approach them. Greetings do a number of things. They kind of set the tone for how an interaction is going to go. If you, no...  Greetings do several things. A greeting... gives the child time to shift gears from -- probably, possibly being introspective and kind of inward, and then trying to shift outward -- it gives them time to kind of orient and come to attending. A greeting -- a familiar greeting is reassuring to the child that you're one of their people; that you understand them and things are going to proceed in a predictable and positive way. It gives them information about who you are, because even if they work with you and they're used to you; they haven't seen you for three or four days, they may mistake you for someone else, just because you're both wearing the same color shirt. They need additional time to recognize who is addressing them. You also can give them information about your characteristics that are important for kids. They need to learn about other people's bodies in a really appropriate way. They need to learn that some people have long hair, that some people have glasses on, some people may have a mustache... and as you greet the child, if you guide their hand -- hand-under-hand as Barbara Myles will tell us -- to check the hair and the glasses, and just a moment -- or lack of -- just a moment to kind of give them some information about who you are. And then it's nice to have a little ritual greeting -- like on some kids, I do a thing like a little clapping pattern that I do with them. It's a game saying -- it kind of lightens them up, and makes them more interested in coming with me -- if I can get them engaged with me, then they're more likely to come with me. And... I think the whole idea of doing a greeting, providing information, providing support to them... is important. That way they're not stealing information trying to figure out who you are. And if we get into the habit of having everybody greet the child -- and I think this is an important accommodation to include in the IEP -- is that staff will have a personal greeting that they do with the child -- and not just the first thing in the morning. You may have to reengage them several times during the day, because so many people may be interacting with them. They need that time and that information to remember who you are.  
>> Strategy:  Meeting strangers.   
>> Blaha: There's a procedure for introducing a kid to a stranger that I think is very useful. If I know ahead of time a visitor is coming or we're going to go somewhere specifically, maybe for an appointment to meet someone -- I tell them about the person ahead of time.  That this is a male or female.  That they are very tall!  Or that they're bald. We give them information as much as we can ahead of time about this person. And then when we introduce them, we show -- kind of model for the other person, and also allow the child... to gather some appropriate information about -- saying, 'Remember we talked about that there was no hair on the head? This is what it feels like. This is called bald.' And giving them this information -- that they get these concepts -- then in the future if you tell someone that they're bald, then they know what that means... They don't have to... they know what that means. And so they're beginning to gather characteristics and information ahead of time for their concept base, and they don't have to grope people to get information.    
>> Strategy:  If you have a groper, develop a Behavior Intervention Plan.    
>> Blaha: We teach by modeling.  They learn the way they're treated.  These things are important to put in an IEP, both the subjectives for the child, accommodations and directives for the staff, and also, if problems escalate and the child begins poking or grabbing people, or snatching hair ribbons and things from other people, because they think this is the only way they can... get this information, or make it happen -- or if they've just simply learned that this kind of behavior is powerful. Do a behavior intervention plan. Get a plan. You need to be consistent in your response. And you need to treat this proactively... before you go out in public -- let them know things that might be happening with their little rule books and discussion. And reactively, know what you're going to do if the child does grab something or poke somebody -- that you know what the plan is, and that you can proceed consistently... and calmly... to help the child learn a better way.     
>> Hugs:  Start early with a variety of interactions, and make a list of who the child can hug.     
>> Blaha: Another issue that comes up quite a bit is the hugging. You know, we hug them when they're little... and as they get older, they want to lunge and hug people. And at that point, we try to switch them to shaking hands, and it's a little late, because it's just not the same! Especially, you know, if you like proprioceptive pressure, it's just not the same! They want to feel squeezed. It very calming for them. It's very centering, and there are many kids that really like joint compression and bodily pressure. And, they love backpacks. They love a big telephone on their lap. They like things on them, and these kids really love hugs, and to shift this type of kid off of a wonderful bear hug into a handshake is a real tough thing to pull off. So, teaching a variety of greetings to kids; like high five handshakes and hugs... are all ways to kind of give them a package as they grow up. So they don't feel so deprived... when no one is allowed to hug them anymore. I think the hugging is confusing to them, because -- maybe they don't see their grandmother for a whole year. And she comes, and they say, 'Hug her, hug her!' And then they see this wonderful guy at the grocery store they love, because he's got a red apron on, and he's by the fruit and produce, and he squirts water on it -- and they love the water and the red apron -- and they see him all the time -- he's not a stranger -- but he can't hug that person!  And it's very difficult for them to understand where hugs come in relationships in our society. One thing that might help is a hug list. Is to have a picture hugging and put who's under -- you know, who you hug and who you don't! Help build some categories, so they're not trying to guess what they're supposed to do. And holding staff and... friends and family responsible for giving them the right information on who to hug, and when.  So, when you're trying to shift them from a hug to a handshake, please be aware that they need to -- they have an ongoing need to meet their proprioceptive needs, and that you're going to need to nourish and satisfy this need in them, in other ways. If they're been using hugs, you have to look at alternative ways. And maybe it is a good idea to go out in public with a backpack or a weighted vest. This is something your occupational therapist -- your therapist can work with you on. It's important to honor this. They need it! And so, if you want to change the way they greet people, you have to be sure that they have... the ability to meet this need for pressure in other ways.  If you're interested in some additional information about this important topic, David Brown has really put a lot of emphasis on this. Your OT's and PT's are also good resources.  
>> Blaha: And we want to make sure that you have the -- we want to make sure that you have the code as we go into the last section which is ‘Working with Menstruation.’ I want to remind you that the book is download-able -- the book also covers masturbation, health care and sexual abuse… as well as these topics today.  
Menstruation.  Take the child's etiology into consideration.  For example, CHARGE Syndrome. Prematurity.  
>> Blaha: Today we're going to talk about menstruation. This is another topic of sexuality education that's going to be very important to cover for young girls with deafblindness. About 30 years ago the issues were somewhat different in terms of the child's body. At that point in time we weren't really aware of the impact etiology could have on when a girl started her period. We typically just checked with the mom and found out when other females in the family had started their periods. And that way we sort of had an idea of when it might occur. But now things are very different because the etiologies that drive deafblindness have really changed. CHARGE syndrome, Prematurity, both of these conditions bring changes with puberty. And so, one thing that we know now is important to do -- for each young lady with deafblindness -- is really be aware of what caused the deafblindness and check to see if this is going to have any impact on the onset of puberty and possibly the start of her period.   
>> Medications can determine cycles.   
>> Blaha: Another variable that's new is there's medication now for young ladies to take that would reduce the number of periods that occur throughout the year from 12 sometimes to 4. Another variable -- another variable in this issue is that medications are now available which alter the number of periods a young lady might experience during the year. You need to talk to the doctor about what's best for your daughter. And also be very aware of the impact that different etiologies may have. This medical piece is very important to understand and... clear with the doctor.   
>> The child may need more practice, so introduce a pad before they begin to menstruate, so they can get used to the pad.  Practice gives additional opportunities to learn how to dispose of pads.   
>> Blaha: One thing that we've learned about these young ladies with deafblindness is that before they begin their periods, it's important to get them used to the pad. We learned this the hard way, because we had a number of girls that when they would start their period -- we'd introduce the pad and they would have nothing to do with it. They'd peel it off! They'd throw it! They'd refuse it! And it was... a bad timing for this battle. So we began in advance with those very small pads... and just introduce them ahead of time so they can get used to wearing them, that it's just part of dressing in the morning -- just give them some time ahead to get used to them.  By introducing them in advance, it gives the young lady time to acclimate to them. It gives you additional time to teach the skill of throwing the pad away, and not flushing it. This can be a point of really confusion, for some little girls, because they're used to being potty trained, and they've been taught again, and again, and again to put the toilet paper in the toilet and flush it. And suddenly, you're having them take another piece of paper and put it in a small dispenser near the toilet. And sometimes this is confusing for them, and they... refuse to do it. They want to flush it. So, it's good to practice this ahead of time when everybody's calm, and you're not already dealing with a girl trying to understand her period. Get some skills in place, get them acclimated, prior to the time they start their periods.  It also gives them additional time to practice. If we only teach them skills about handling the pads during their period, they don't get enough practice, and it comes once a month, they get some practice, and then it goes away. And I think that, this gives them continuity to the practice, so it is a technique or -- that you may want to consider.    
>>Am I doing something wrong?     
>> Blaha: Another thing that can happen is -- when little girls start their period, they think that they're going to -- they're potting in their pants. And so they become upset, and they don't want to get off the potty. So it is -- it takes time to show them that it is okay to wear the pad, and not be on the potty. And if they're used to the pad, then this will help.  
>> Use the calendar to do advance planning with the child.    
>> Blaha: I think it's also important if the child has a calendar, whether it's a daily calendar, weekly, monthly -- that you schedule the period. If it's a daily calendar box, and maybe every other slot or every third slot, depending on what you think the timetable should be, put the pad in there as part of the day. It will make you take time, and it will let them know that it's coming up. If you... if you say, 'Oh, you know, we're so busy today, why did this happen today?' and you just rush through it, the girls don't get a chance to practice, they don't get a chance to work on the concepts. And that is the most important thing you're teaching that day. One of the mistakes we made early on is that we would go too long because we were busy doing activities, and we would wait too long, and the girls would get uncomfortable in their pads, and we would need to change them, and we were not mindful of that. And some of our girls started pulling them off and throwing them, even in public. So plan to keep them comfortable, to make it part of the routine. Take the time to do it frequently, and save yourself a lot of trauma with that.  When going out in public, be prepared. It's a good idea to have a backpack with enough pads, and a change of clothing, so that you have no problems... on the field trip or community outing. It's also important -- part of planning ahead, and that's another reason to use the calendar. You could have the girl's periods scheduled on a calendar, and 1 or 2 days ahead, you could talk with her about, 'How many sanitary napkins do you have? Do we need to go to the store?' That way it's part of being responsible, and kind of owning the process, which I think is an important part of being independent.  
>> Language and concept development.  Teach the correct word and sign.  Sort people by gender identity.  Who has periods and who doesn't?  Who can help you?  Menstruating is normal. 
 
>> Blaha: Another thing to consider is give it a name. Give it the sign. You always need to give the name or the sign to the event for these children -- they need the language. Another thing to do is take a sanitary napkin, and under it just sort pictures of who would wear one, and who doesn't, because I think it's very difficult for -- these days for girls to understand the difference between girls and boys. And I think this is important affirmation. And I think it would be terrible for the kids to grow up and not know if they're male or female. It is one of the first things we notice about any individual, is if they're male or female. And this is gender specific information -- that your mother wears one, your aunt has worn one, you wear one, your girlfriend wears one, but your brother does not. That this is a girl thing. It also -- if they need help, it indicates who they go for help... to. If they need help with their sanitary napkin or something. So, having this activity where you kind of sort a pool of people who have -- who would know about it and could help you -- and who are female -- I think this is an important category for the -- and one way to teach gender identity. And also that it's normal -- they're not the only ones that this is happening to. 
>> Blaha: I'm sorry we ran a little bit over. Thank you for your attention. Please feel free to email me or call me if you have any questions or need more information. And fill out the evaluations. Have a great afternoon. Thanks so much. Bye.