
Change Makers: A Podcast from APH
Change Makers: A Podcast from APH
Solutions to Eye Pressing
On this episode of Change makers, learn about solutions to Eye Pressing. Learn about what it is, how a bracelet can help subdue the need, and hear the personal story of how a similar bracelet helped with another urge.
On this Podcast (In Order of Appearance)
- Narrator
- Sara Brown, APH Public Relations Manager
- Lee Huffman, APH Low Vision Product Manager, Product Development
- Ellen Crupi, HabitAware Director of Awareness
Additional Links
<silence> Welcome to ChangeMakers, a podcast from APH. We're talking to people from around the world who are creating positive change in the lives of people who are blind or have low vision. Here's your host.
Sara Brown:Hello and welcome to Change Makers . I'm APH's Public Relations Manager, Sara Brown . And on today's episode, we are talking about solutions to eye pressing . We asked if people knew what eye pressing was on Facebook, and we learned that that was something not too many people knew about. According to the APH ConnectCenter, eye pressing is when a child or adult aggressively rubs or pokes their eyes with their fingers or knuckles or fists, and it's believed this is done in children who are blind or low vision, partly due to the brain receiving an adequate visual input. Prolonged or aggressive eye rubbing might satisfy the need for simulation, similar to scratching an itch. While controllable, the urge can be very strong. Eye pressing can feel therapeutic, providing visual feedback when little to none is received leading to satisfaction or calmness. However, eye pressing is very bad for your eyes and the surrounding areas. It's difficult to access the extent of the injury to the structure of the eyes, but it has been proven to cause retinal detachment, scratching and thinning of the cornea infections, receding of the eye socket, and further impaired vision. So after all of that, how do you help your child curb this habit? Well devise a plan for refocusing their attention when they're eye pressing. The alternate behavior should be socially appropriate and not cause any harm. It may entail exploring a toy or squeezing a stress ball, or playing with a fidget cube. And when your child is eye pressing, gently, gently help them recognize it and encourage the alternate behavior Gently is critical. Individuals should not feel ashamed or be shamed, as this will likely harm your child's self-image and cause them to continue the behavior just in private. Also, the individual should be given a lot of patience in persistence with redirection. Many individuals with blindness or low vision have succeeded in reducing or abstaining from eye pressing , which, as you can imagine, is especially difficult because it can be engaged unknowingly. And another way to help treat this behavior is with this new device called OpticAware. I have APH'S Low Vision Product Manager, Product Development, Lee Huffman here to talk about the product. Hello Lee , and welcome to ChangeMakers.
Lee Huffman:Hi, Sara, how are you? Thank you for having me today.
Sara Brown:Always great to have you on, and we're having you on today to talk about a new product. Um, but before we get to that, would you like to introduce yourself and let our listeners know what it is that you do at a APH?
Lee Huffman:Sure. Thank you. I am the Low Vision Product Manager for product development at the American Printing House for the Blind. And what that means is we have, of course, we have products that we have on our, in our catalog and on our website all the time. And those are sort of our standard products that we have available. And those are sometimes legacy products if we have them for, you know, several years. But we also are always looking at new innovative products to bring to people who are blind or who have low vision. And so I work on that side of the product line, looking to bring new products to APH to offer to people who are blind, mostly to low vision, but I also do work with orientation and mobility products and some blindness products as well. But this all is in product development, bringing new innovative products to APH.
Sara Brown:And one of those really cool, innovative products is HabitAware. Can you let our listeners know just what HabitAware is?
Lee Huffman:HabitAware, hopefully we're gonna be launching this and well , we will be launching this by the end of September of this year, 2024. And HabitAware is a band that you wear on your wrist, sort of like a Fitbit styled band, and it helps people, hopefully, the intention of the band is to reduce or eliminate the activity of eye pressing. And eye pressing is what is called a body focused repetitive behavior. You know, there are many of these different types of behaviors. In fact, one in 20 people have a body focused repetitive movement. Now, for some people that's hair pulling , which is called trichotillomania . Some people bite their fingernails, some people will pick their skin, some people will do other things. But these are all called body focused repetitive movements. And for people who are blind or low vision, some of those folks will press their eyes. And one thing that can happen when people do engage in eye pressing is that they can damage their eyeball. Uh, even if they, you know , if they , some people may have low vision, who do it, have some usable vision, they can damage the vision that they have . And even if a person has no , uh, light perception or no usable vision, they can damage the eyeball , uh, from repetitive strenuous eye pressing to the point where it may rupture actually need to be replaced or removed. So it is a very big health concern if a person does engage in eye pressing. And the band as , as I said, looks to reduce that behavior or hopefully eliminate it altogether.
Sara Brown:Now, how does the, the band know I pressing is underway?
Lee Huffman:Okay, you can wear the band on, some people press with a left hand, some with the right, and some people can press with both hands. And so what you would do is you would wear one of the bands on your dominant hand that you, I press with sometimes. If you use both, you could have one on both hands. And what happens is, when you reach up to press your eye , there is a module on this watch style wearable band, sort of like an eye fit or a , or an Apple Watch styled device that you would wear. And when you reach up, there's an algorithm. And so just like with your smartphone, it knows when the phone is moving left or right, or up or down, or where it may be. This does the same thing. And when you reach up to press your eye, what happens is there's a silent vibration that occurs to remind the person of where their hands are. And so the idea of the band is to, number one, make people more aware of their eye pressing. Because usually when that occurs, they don't realize that they're doing it. And it's done as sort of a stress reduction for somebody. If they get really stressed in their day, they'll just start pressing their eyes. And in the moment they don't know it's even happening. And so the idea behind the band is to provide a vibration on the wrist to , uh, notify the person, Hey, I'm pressing my eyes. This is not good for me and I need to, you know, put my hands down and choose a different behavior so I don't damage my eyes. And that's basically how it works. What happens is you use this band in conjunction with a smartphone, your Apple , uh, iPhone or iPad, and you download the OpticAware Band from the app store. And what this does, the app helps you track or helps the user track their eye pressing behavior, for example, you're looking for trends, is what the, the app helps you to determine. So if this is a student who's 12 or 13 years old and they're going to school on a regular day and maybe around, you know , second period algebra class or third period English class where they're trying to decide is this a verb, a predicate, or the object of the preposition? And they get stressed with that, and because of that stress that particular day, every day , that's when they're eye pressing the most . So this will help the wearer and the teacher of the wearer or the parent , uh, notice trends in that behavior. So they know it's that time every day. They can have the student possibly think more about eye pressing at that time or realize, Hey, when it happens that time every day , I need to really be more engaged. I need to, you know, try other ways of distressing myself and really be more conscious, maybe at the end of the day where they're tired from the day and they're, they're really ready to get home, whether they be from work or from school. And they may press then, but at least they would have number one, the awareness of it because it would vibrate. And also they can look at that on their iPhone app to see when they're doing it the most, to become more cognizant and find ways of, you know, changing their behavior at certain times of the day.
Sara Brown:Now, why is a product like this important? Can you talk about some of the, the side effects eye pressing can cause?
Lee Huffman:Absolutely. So APH you know, we want people to understand that the reason that we're doing this is to help preserve eye health in mostly children. 'cause a lot of children engage in this, where they start early. But this can absolutely be an adult who develops it later in life, or it could be a senior if they lose vision later in life or something happens. It can be a person of any age at any time. But we want to be able to help them preserve as much life , health, health as possible. Because if a student or anyone presses their eyes hard enough, those eyeballs can rupture. They can lead to decreasing. If you have some usable vision, you could actually damage your eye to the point to lose the vision that you may have. You could bruise the orbital bone around the eye socket and really cause other problems for your eyeball that , uh, are unrelated to even to vision, just other , um, medical issues. And we don't want that to happen. And that's why we're wanting to bring this product to APH to bring it to people that , uh, can eliminate or hope , hopefully eliminate, but at least reduce the amount of eye pressing and the opportunity for damage to the eyeball.
Sara Brown:Now, is there an age range? I'm gonna assume, you know, for those who are able to wear a , a ba a bracelet and may possibly be able to look at an iPhone or have access to one. But is there an age range for something like this?
Lee Huffman:Well, with, with anything you have to have certain criteria in place. And the optic aware band may not be for everyone. For example , uh, you would want a student to be number one old enough to feel comfortable wearing a watch. 'cause if you're, you know, four, five or six, you're not gonna maybe feel comfortable wearing a watch at all. And that may be a distraction for you. But there are three criteria that we would really want a person for who this would work best. Number one, someone who knows that they do eye press . Uh, someone who also understands at least a , an entry level how damaging eye pressing can be to your eyeball. And third, someone who wants to stop. So even for a person who maybe is a smoker and they want to stop, you have to want to stop. And this is a person who has those three traits in place old enough to know they're doing it. They understand that eye pressing can cause damage to their eyeball. And number three, they want to stop. That's who it's gonna work best for. So we believe somewhere around, you know, late elementary school, eight or nine years old, those three things can be in place and also up and through adulthood into a senior , uh, senior citizen.
Sara Brown:Now, something like this, I feel it could be used for other conditions. Do you know if Habit Aware, if this band, if this bracelet can be used for other other scenarios?
Lee Huffman:It absolutely is. And in fact, it has been used in other scenarios , uh, before being developed for , uh, eye pressing. So HabitAware has , uh, their own website and they have products already for trichotillomania, which is Hair Pressing, Skin Picking , which I had mentioned before. Nail Biting. The difference is the module that's in the band. The algorithms that are in the band are different for someone who might be picking their skin, biting their fingernails, pressing their eyes, or pulling their hair, the movement is different and the band picks up the different algorithm , or the algorithm picks up the different movements and understands what that is. So HabitAware does have bands for other conditions and we are just now developing the , uh, i pressing algorithm that will be launched later this year.
Sara Brown:I swear technology is something else.
Lee Huffman:<laugh>, you know, it's pretty cool. It's, it's great that we can do this.
Sara Brown:I'm going through the motions of biting my nails versus picking skin and they are two different motions. And the fact that it can pick up on what's the difference is amazing. Absolutely. Um , is there anything else you would like to share or discuss about Habit Aware or anything else in your, in your world?
Lee Huffman:Well, you know what really , uh, I just wanted people to know that this is not a , uh, this is a band to bring awareness to what you're doing and to hopefully curb your behavior. It is not a, you put the band on it and it's fixed. You have to , uh, work with the band and time will be the teller of how successful you are. 'cause even when you first put it on and you begin using it, and it's, it's vibrating, you will have to get used to wearing the band a little bit because you're not used to having something like that to , to remind you that you're eye pressing. So change happens with this device over a period of time. So, you know, 30 to 60 days, something like that, you will most likely begin for the person who it's well suited for. Begin noticing a decrease in your eye, pressing and developing trends. And you will develop a plan for yourself or a pattern of , uh, ways of thinking or other things to do to help relieve some stress. Then besides the eye pressing motion itself. So it'll hopefully be something that you can use over time to curb behavior and hopefully eliminate it, like I said before, so that you will not be damaging your eyes in the future.
Sara Brown:All right , Lee , thank you so much for coming on and talking to me today on ChangeMakers.
Lee Huffman:Thanks, Sara.
Sara Brown:I've put a link in the show notes to OpticAware for those interested in learning more about the bracelet. Up next I have HabitAware's Director of Awareness, Ellen Crupi, here to talk more about the brand HabitAware and the bracelet OpticAware and her own personal story with these products. Hello Ellen and welcome to ChangeMakers.
Ellen Crupi:Hi Sara. I am so happy to be here.
Sara Brown:Great. Well, we're happy to have you on here and up first, like I always ask, would you just like to introduce yourself to our listeners and let let them know what it is that you do at HabitAware?
Ellen Crupi:Sure thing. So my name is Ellen Crupi. I am the Director of Awareness at HabitAware. And it'll be easier for me to tell you what I do once I tell you once I answer your second question. Haha, <laugh> .
Sara Brown:Alright , well onto that second question. Talk about how HabitAware originated?
Ellen Crupi:Okay, this is one of my most favorite things. So HabitAware is a company that was born out of pain and turned into purpose. So the founder, her name is Anila , has a , uh, condition called Trichotillomania , which is hair pulling disorder where you wanna stop, you've tried to stop, but you find stopping impossible. She had this condition pulling her eyelashes and eyebrows for over 20 years, hid it from the world, including her husband of three years. And one day after pulling just a little too much, she realized I gotta get in the bathroom and cover up my damage before my husband sees. And then he literally bumped into her on the way to the bathroom and he looked at her and said, Anela , where are your eyebrows? And she was caught deer in the headlights and confessed her hair pulling secret. Now, fast forward as they researched this and she was touching her eyebrows without realizing it, he gently grabbed her hand and she said, oh my gosh, if I had something other than you to alert me, that would be amazing. And that's how the company was born. HabitAware trichotillomania , which is similar to eye pressing, which we'll talk about, and also skin picking and nail biting. They're not just bad habits, they're a chronic medical condition that starts with awareness. So what do I do? I also have the same disorder as Anila . And I came to the company as a customer and the bracelet worked so well for me that I reached out and said, I need to help others the way you help me. So that's why my title is Director of Awareness, because I wanna spread awareness of these disorders, but it goes deeper than that. It becoming aware of what you're doing so that you can then make healthier choices.
Sara Brown:Wow. Such an interesting story and you're part of it.
Ellen Crupi:Yeah.
Sara Brown:And you know what this product is and how much, how it , how important it is. So how did you come , how did you come to adapt the Keen bracelet for OpticAware?
Ellen Crupi:That is , uh, another one of my favorite questions. So the Keen bracelet from HabitAware is the company Keen , uh, is the, is our device. And what it does, it's a bracelet that you wear that vibrates when your hands are up by your eyes or your head or your mouth. So this is a great story. So years ago, this lovely woman who was blind named Caitlyn purchased our bracelet and she wrote into support and said, I didn't buy it for what it was meant for, but I could really use your help in training this bracelet so that it could work for me. So I hopped on a training Zoom call with her and her sighted partner to see how she was physically using her hands , um, to , uh, to press into her eyes. And we were able to get the bracelet to work good enough for her. The bracelet itself has sensors in it, which we'll talk about in just a second. It worked so well for her that she then said to me, Ellen, I have to introduce you to Greg Stilson at APH and we need to see if we can get this bracelet adapted to work for people like me who are blind. I'd like to add that , um, Greg and his team did a survey at APH asking teachers and parents, do you find there's a need for something to help you with eye pressing? What have you used in the past? Is this a problem? If you could have something that was , uh, discreet where the student or the person could be empowered to, to know where their hands are, when their eye pressing, would this be a value? Typically there might be 25 or so that answer the survey. And they had, I wanna say nearly 300 or maybe more. And that's how we began this process.
Sara Brown:Wow. So when you get feedback on that level, you know, you've kind of struck gold and are onto something. My goodness. Now how does that bracelet know eye pressing is happening?
Ellen Crupi:That's a really great question. So the bracelet itself, it doesn't learn. Um , but it , it has, we have these really smart engineers and programmers and luckily years ago these sensors didn't exist, but now they do. So there's sensors inside the optical wear bracelet. And what we did is we literally watched kids perform eye pressing with permission from their parents. And we saw the common ways that they eye pressed and how their , uh, their wrist and their forearm and their fingers and their hands did this. Unlike people with hair pulling who tend to scan. So right now I am taking my fingers and I'm brushing them up against my eyelashes. And normally someone would scan a little bit to find the one they want and then pull it out. So for Keen , our sensors are scanning the movement, but for eye pressing, what we've learned is people, kids and adults will put their fingers or hands right into their eyes and leave them there, but there's certain body positions. So I know that gets into a little bit of detail, but the bracelet is hand to raise. It knows that the person is raising their, their hand up towards their eyes. And then we have some ways you can adapt the bracelet so that it's either a short hold by the eye or a longer hold by the eye and then it'll vibrate and the vibration feels like your phone. Just a gentle little vibration. And what we say with Keen, and I wanna say with Optic aware , it's a hug on your wrist, not a slap in the face. It's a hug on your wrist telling you, Hey, my hands are not where I want them to be. I'm awesome. Maybe I should pause for a second and realize, am I tired? Am I hungry? Am I concentrating? Do I need a break? And what's so lovely about this is you don't have the parent or the teacher going, Sarah, Sarah, Sarah, get your hands on your eyes, Sarah ,
Sara Brown:Which I'm sure everybody is happy about, that nobody's yelling at you and nagging at you and getting on you. It's just you said a gentle hug on your wrist. Yeah . Oh, to snap you out of that process.
Ellen Crupi:You got it. Sometimes we need to be snapped out of the trance. Yeah.
Sara Brown:Wow. Now talk about why this is so important to have a product like this.
Ellen Crupi:Oh, well, there's two, there's many reasons, but there's two key reason . There's three key reasons. The first is the physical damage that someone can do to their eyes. Someone might not realize that doesn't understand the science or the, not the science, but the medical, how the eye about the eye. But you could do some real damage. You can cause cornea disruption. You can cause deformity, it hurts. And you might even need an eye replacement, a prosthetic. So from the physical, from the, from the met , from the social, it's not socially acceptable to be pressing into your eyes. I know. You know. So this is a way of helping blind students who are doing this behavior, just be aware, again, aware optic aware, aware of where their hands are. If they wanna press, maybe it's safer to press your eyebrow than it is to press your orbital eye. So that's one. And then the third one is empowerment. Again, set of Sara, stop this empowers the person who's wearing it to know , to be aware. And then what do they wanna do? Because this isn't parents out there, and I'm a parent too. We just want our kids to stop. And it really is the per and the adult, it's the person who has the condition, let's just call it condition. They have to be the one that wants to stop. We can't just make somebody stop. But this empowers the person to be able to be independent and to do it on their own.
Sara Brown:Now is there an age range for this product?
Ellen Crupi:Yeah, that's a , that's another good question. That actually feeds into your first one. We, you know, I would probably say 10 and up only because it is a behavior change device. So the, the, the person, the child using it needs to be developmentally there to want to do the process of behavior change. So you might have a really mature 8-year-old who is cognitively like, oh my gosh, I don't wanna do this. I really wanna make some changes, walk on and use it. You also might have somebody who is 10, 11 or 12 who isn't really cognitively wanting to make this change. And then the bracelet wouldn't be for them. So our, our average is saying 10 and up.
Sara Brown:So this product can actually benefit individuals that have any sort of hair pulling, eye pressing, nail biting. This can help make those individuals a little bit more aware of their , um, conditions. Is that about right with this, with this bracelet?
Ellen Crupi:Uh, yes. I would say that. So because of the technology which is hand to raise anything up by the face, it would be helpful for. So if there's, it has to be hand to raise. So if a child, and some do, they might suck on their shirt. We've seen that with kids , uh, picking their nose, biting their nails, picking at their face , uh, patting their head , uh, any or pulling at their hair, anything that's up, it would be, it, it would work for, it has to, this particular technology is hand to raise. Mm-Hmm, <affirmative> ,
Sara Brown:Because it has to activate those sensors I'm taking it.
Ellen Crupi:That's correct. That's correct. Gotcha . So if somebody like my hand, let's say I'm raising my hand , so now it's up by my eyes and now I just move it away. But I don't put it down, but it's up, it's perpendicular. If I then put it back towards my eyes, it won't vibrate because it hasn't been put back down. So there are some nuances with this bracelet. Uh, the other thing is , um, it's best to go into it with the mindset of it's a hug on my wrist versus a slap in the face. It is my self-care alarm. It's my, maybe for young kids. It's my fairy. It's my superhero. It's my hug on the wrist.
Sara Brown:Now, before I let you go, is there anything else you would like to discuss?
Ellen Crupi:Oh , hmm . That is a great question. Is there anything else I would like to discuss? Well , anybody who's listening to this, I would encourage you to , uh, before you run out and buy this product, you wanna check in with the person who's using it. Do they want it? As we've seen in our world with hair pulling, skin picking and nail biting, parents just buying the keen bracelet and handing it to the child and the child's like, whoa, I don't want this. So you want to teachers out there, you wanna , you want to , uh, make sure that the child is on board and that they're interested in doing this. And same thing with teachers, I mean with parents.
Sara Brown:Very good advice . And that's very true. I guess if the person doesn't want it, you're gonna have a fight on your hands to make them wear it and use it. And they'll use it when they're ready and
Ellen Crupi:They'll use it when they're ready.
Sara Brown:It's like you said earlier, they gotta , the person has to wanna help themselves.
Ellen Crupi:The person has to want to help themselves. That's right. And parents and teachers, if , you know, we just want the kids to stop and believe me, they wanna stop too. Uh, that's, you know, stopping can be impossible. And it's all about managing. And I, I like to say, and this really resonates with parents, I speak with teachers. If a mom or a dad says, "I'm never yelling at my kid ever again. Never, never, never. That's impossible." But parents can learn to manage their yelling. I'm never gonna get mad when my , I'm never gonna be late anymore for carpool ever again. That's probably not gonna happen. But you can learn to, alright , what can I do so I'm not late for carpool mostly. And that's the same thing with this too.
Sara Brown:Okay, Ellen, thank you so much for coming on ChangeMakers and talking to me.
Ellen Crupi:Oh, Sara, it was a pleasure. If you ever want me to come back, you just let me know.
Sara Brown:You're always welcome on ChangeMakers. So thank you.
Ellen Crupi:Thank you.
Sara Brown:I've put links in the show notes to the ConnectCenter, OpticAware and HabitAware Websites. For anyone looking for additional information regarding eye pressing, do you have a podcast idea, send it my way by sending an email to changemakers@aph.org. And as always, be sure to look for ways you can be a change maker this week.