What comes to your mind when I say lowered teenagers? How about let's add in teenagers with low vision? That population can be more difficult than any other population. There's just so much going on that we need to be aware of. Today, we luckily have Erin Buckley on the podcast and she's going to share some insights that she has gained, working with teenagers with low vision.

In this podcast episode:

• Background introduction

• Get to know Erin Buckley

• Relationship between O and M Specialists and the parents

• Erin’s survey

• Low-vision teenagers

• What Erin would like to share

Transcript of the Episode:

Welcome back to the podcast. Today's episode is one of my absolute favorites thus far this year, because I just so feel for what Erin has gone through. Our stories are really similar, but she actually went and did something positive about it, like real positive, and I sat and wallowed in my pity. You'll get to hear that story in a little bit. But first, let me tell you a little bit about Erin.

Background introduction

Erin attended Boston College for orientation and mobility and rehabilitation teaching. She's covered all ages. She's worked with nearly blinded adults at the Carroll Center for the Blind with veterans as the blind rehabilitation outreach specialist for the VA in Boston, and as a private contracting with school age students. And now she's the Vision Services supervisor and Comms at the North Shore Education Consortium in Beverly, Massachusetts. She's married with three adult children and a yellow lab named Woody.

Now, we're not gonna take up too much more of your time, I really want to just get into this, and see the reason behind why she wanted to get information about teenagers, and how we can work with them better, but how she went about it. So whether you're coming to the symposium, and you're gonna go to her presentation, and you're gonna get the strategies, from the information that she's going to share there, or you're just a teacher, or an autism specialist or parent who really wants to help, and whether you want to help by filling out the survey that she has, or you want to help in your own way. I hope this conversation sparked some ideas for you. All right, let's go to the show. 

Get to know Erin Buckley

Kassy:
Welcome to the podcast. Erin, I'm so glad that you are here. We have a lot to dive into. We have a lot to talk about today. And I want everybody in our community to get to know you and to learn a little bit about what we're going to be talking about at the symposium. But also really like… I have a lot of questions for you. And I'm really curious about you. So would you like to introduce yourself and share a little bit about who you are?

Erin:
Of course and thank you so much for having me this is… it's really exciting to be able to try and get some word out there. As you know, and I think you've mentioned before it can feel sort of isolating in this field at times. So it's nice to feel like I'm actually going to be able to have contact with people and further my area that I'm reaching beyond just the Northeast, and particularly in North of Boston.

So yes, I'm Erin Buckley, and I've been a Comms for 31 years, I had to sit down, do a lot of math to figure that out. I was in the Boston College program before it became the UMass Boston program. And I went through for the orientation mobility and also rehab teaching specialists. I started off working right out of school, I went to the Carroll Center where I worked with people who had had vision and had lost it for the most part. In the summers we did have programs with school aged kids. But I feel like that was a really good introduction and an interesting dynamic working with people who had had vision at one point and then lost it. Then I went on to work at the Veterans Administration and I was part of their initial program that’s called BROSE.

I'm not sure if you're familiar with that, but blind… we have outpatient specialist. So it's people that are coming from their blind, we have training centers and going home. And then trying to apply all that they learned in their home setting. So we have local people that would go to veterans homes and try to, you know, help them to use all that they learned while they were there. And then I started working in the schools once I had my kids. And that's one thing I love about this field is that you can kind of adjust to what your life needs are. So my kids were younger, and I started working in the schools. And I've never stopped doing that ever since. So I love it. And I don't know if you want me to go right now into the work history from schools…

Kassy:
Sure, whatever you want to go into. Whatever you want to share, this beginning part is totally fine.

Erin:
Okay. So I started working in the schools with kids. And I love the fact that you can see them and in their school settings and get to know all the team members and any of you know, it can be overwhelming. The teacher, the paraprofessionals in the classrooms, the secretaries PTS, OT speech, all the different people that are working with these students, and of course, the TVIs. Those were actually the easiest for me, because we have, you know, a lot of overlap, or try to get together but working with these big teams, and then you go to another school, and you start all over again, with their teams there. And everyone does things differently. And so it's a big adjustment.

I also didn't mention, I did some private contracting in the schools as well, for what it's worth. But what I started to notice along the way, is that you don't have a lot of contact with families, when you're seeing the kids in schools. And even if they have, you know, parent teacher conferences, we’re not invited to those. And so you have to really make that happen. Sometimes in the schools, they also tend to have a unwritten or unspoken, I think, thoughts about contacting parents.

You know, oftentimes here will know that usually the teacher will do the contacting, you can tell the teacher what you want the notice to be sent home, and they can try to get the information. And I understand they're trying to make it less overwhelming. And they're not having everybody contact them, phone calls and loads of emails and whatnot. But it's so personal, the aspect of blindness. And I know that's our field. So that's the only thing I'm thinking of, and there are other disabilities that I'm sure are equally personal.

But I find that it's a big emotional issue, having to put a cane in somebody's hand and have them go out in front of the kids in their school or in front of their neighborhoods, and actually hold this cane out. It's something that they're not accustomed to, and maybe don't even really ever want to do, because they didn't… Maybe they thought people didn't know that they had a visual impairment. Maybe they could hide that. And the more I was in the field, the more I said, this is something… it's a big issue. It's… if people don't know, how can they help you? How can they understand? And then how can our students get where they need to go in terms of having the confidence if you're trying to hide something big? Does that make sense? 

Relationship between O and M Specialist and the parents

Kassy:
Oh, my gosh, it makes complete sense. And I actually have like a little bit of a deeper question for you, you mentioned that you worked at the Carroll Center, and you worked at centers where people would come, they would live there with the bro… with the bros… I'm gonna mess that up a lot. But I already did. But you know, with that organization, and then they would go home. I worked at a residential school and I remember seeing the parents like three times a year. At drop off, parent weekend, and then pick up. And my friends who are itinerant with texts with parents and they had a great rapport relationship.

Now, I will say I'm extremely introverted. And as I've gotten older, become more extroverted. But at the time, this was also a friend who was very extroverted, and I was very introverted, and I couldn't delineate the difference between… is it just that I work at this place? And I don't see the parents very often because they don't come and pick them up? Or is it because you're… you're extroverted, and I'm introverted, and it would be the same.

But I find now even working in as contract, I do have more communication with parents. But I kind of would like to hear from you. Since you've also worked, you know, both kinds of settings. Do you feel like the parental relationship between O and M and the parents was better or worse, just in general, within the school system, or within the centers?

Erin:
Oh, that's an interesting question I hadn't really thought of. So… I mean, I would say definitely what you said that the parents aren't there when you're in a centre, right? And actually, the centers that I worked at were typically for adults, and in the summertime it was kids, but again, it was a six week program. So they would get dropped off one week, and then six weeks later get picked up. And there really wasn't any chance to be interactive. So actually zero interaction, I would say. And this was years ago, but I don't think we would have ever reached out to parents, which is a shame.

And now, in the schools, maybe there is more. We do have their emails, and we do have phone numbers, and we can reach out at times. And it just depends also on the school, I think some schools are more open. And you know, the smaller, maybe school where there's a really tight knit team, it could be one or the other, it could be that they allow and think it's great to call, or they might say, hey, let's just keep it professional. And that's another thing. Cell phone, numbers, texting, all that stuff. We are now in a time when everyone's nervous about, you know, having boundaries, the right boundaries. And sometimes a close connection is difficult to have if you're really worried about boundaries. 

Kassy:
I find that too. And we can talk about boundaries right now, because I'm very big on boundaries. I have a separate phone number for my students and parents. That is a Google phone number that I just bought with a Google email address. Now, I can't go until legality about that. I'm just sharing what I do. Because my Google email address is my personal one. But they don't have my personal email address. They just use it as a Google Voice number, but that I really liked because I could do it on the computer.

Erin:
I found out about that only recently. Does that work well for you?

Kassy:
Yeah! It works so great for me. For me, because I'm contract, so my office is at home. I need physical boundaries of some sort. Also, my work is also social media, where a lot of people there off time social media, so I have I really have to have boundaries that other people don't have to have. However, the Google Voice I really liked, because I can call on my computer. It does sound like I'm on a speakerphone. Okay, whatever. But I can have Google Translate right there next to me.

Erin:
That's great!

Kassy:
Yes, and that has allowed me to be able to talk to parents, who I wouldn't normally have been able to talk to with the language barrier.

Erin:
And then they hear the translation coming through?

Kassy:
No, I can like look it up while I'm talking to them. Or I can text them and have it all right there on the same screen.

Erin:
Oh, wow. Okay.

Kassy:
Yeah. And then, of course, there's just sharing your boundaries upfront. Like I tell parents, I won't respond after dinner time. And then if I can, I will, but sometimes I don't. But I get what you're saying. Because it can be very tricky, especially if the parents are very litigious, or the school district is scared of due process. 

Erin’s survey

Erin:
Yes. Yes. That's always… that's becoming a bigger and bigger issue. I think, as we go along, it was not so much an issue or worry, years ago. But so basically, I'll tell you, where the idea of the survey came in, if that's okay?

Kassy:
Yeah, why don't you explain what the survey is, how it came about, and all of that.

Erin:
Okay, so what I've noticed in working with these kids, there was a particular bunch of kids that were troubling me. High school kids, a handful, but… meaning a small number, but they were also handful. They were just angry and resistant and never wanted a cane and when you knew they actually need it, and they… they're going to need in their future. And you know that in the school setting is the time when our services are available. And I know that services are available after graduation, but they're not as… as easily available. And you're going to learn the majority of what you need at school. Tell me if you agree with that. But that's my understanding.

Kassy:
Yeah, especially in O and M. 100%. Unfortunately, though, unfortunately. But currently, yes.

Erin:
Yeah. So it was a constant topic of conversation at meetings and how do we reach them? What do we do and you know, this one just will not carry a cane, will not talk about a cane. And you also have to recognize it's a really touchy issue. And, and we're the ones who have to do it's, it's difficult, you know, to be the one at a meeting, say with a younger student, and you know, it's coming down the line and I like to just try to float the idea at one meeting and let it sit for until the next year and then bring it up again, and, and try to get the parents used to the idea. And sometimes you wonder is the approach of just ripping off the band aid better, but I'm not sure about that. It's an issue. It's an emotional time. It's an emotional topic.

So and then a particular student that I had that, several of them, I'll be honest, it… they already had some kind of like mental health issues going on. And so that's going to add to it. And one in particular recently, that actually is the reason why I started having a survey. And it was because it's a student who has… the acuities are bad, or like 2400. And they believe, because she's been an elementary school and the mother has worked in schools believe that she just doesn't need that cane. And we could say, knowing what she can see that she's gonna need this. And she's educated this mother, and she's trying to do everything that she can, that's the right thing for her child. And I really wanted to reach her. And I felt like maybe something like this, where she could hear about what has been successful for other kids, kids who are like her own daughter, maybe this could be true.

So this is where I came up with, it was really kind of like a last minute thing. And I said, I have now in contact with a lot of people that I used to teach. And now they have a lot of friends that have gone through programs, and I thought maybe I can get the word out, can I just kind of pull some information from you, one particular student to who I also knew was going to need a cane and he, you know, sometimes you have a kid that you say, it's gonna happen, that something bad is gonna happen for him to say, Oh, now I'll use the cane. And so it did happen. And thankfully, it wasn't getting hit by a car. And I was so worried about that. It was bumping into a couple of goals, and spilling coffee all over him. And you know, having a bloody nose, that type of thing.

So anyways, these are the people that I reached out to. They have answered my survey trying to get the word out further and further. I am putting it out there still because I would love to have the more responses, the better. But basically, the survey is about what did you take advantage of when you're in school? And I started with basic things about what's your eye condition? And what age that you started with the eye condition? and… but then I went into what services did you get in school? And starting? When did you get mobility? Was it Elementary, Middle, High School, TVI services? elementary, middle or high school? And then going on to… Were you resistant? And what were you feeling at the time? How were you? What did you think about the services? Did your parents… what do they think about it? How was their response to it? And the open response part of it is the part that I feel I got the most information from because many people said, you know, I don't really have anything but the ones that did answer II got a good view into what was going on with them. And I feel like it was really helpful.

So yeah, thinking how do I reach the parents? How do I reach other students? How do I best provide a service for them? So, you know, I just wanted to reach out to the people who had actually lived this life and done these things. And, and I asked one of my questions is, how could your mobility specialists do things differently? Or better? And what do you remember specifically, is there a particularly good experience a particularly bad experience and mobility? And I'm just curious what people think. And I said, I told the ones that I did know, I'm not going to have to know who said it. And if it's something that was me, I don't care. I'm not going to be bothered by anything that if… If I did anything that they felt wasn't quite the right thing I can… I can handle that.

Kassy:
Yeah, so I love the fact that you put out this survey and you asked people for their… their input. Can I ask you a couple questions about the survey? And I know at the symposium, we've already talked how, you know, survey numbers are super great for our people, however, you know, getting the information like how can we put this into action? What are those tangible steps, we'll talk about that, all of that at the symposium itself. And I know you give some really great strategies that you've learned along the way from interviewing, you know, all of these people. So the survey itself is that given to the teacher or the person with a visual impairment, like, who fills it out?

Erin:
The person with the visual impairment fills it out. And it's actually, I made it for people who have already graduated high school, because I want to hear about their experience when they were in high school, and how they've done since then, hoping to make a correlation between the services that they got and the, you know, the potential of what they were able to do afterwards. And so it's done online. And I think I did notice that I could print it out. And you could fill it in checkboxes and all that, but I really only have it as something that you fill out online. And then it's just automatically submitted to me. I use Google Forms, which is very easy actually.

Kassy:
Yep. And very accessible. So is this something we can put it out to the symposium? But we can also put it out right now. So would you like it to be on the show notes page like we can list it? 

Erin:
Yes, please. 

Low-vision teenagers

Kassy:
Okay, great. So send me that link. And you guys, we will have this available. If you are a Comms, GDMI or NOMC, make sure that it goes out to your adult clients or your former students who have already graduated so they can fill out. Because the more that we can get this information into the hands of our O and M specialists, the better. And yeah, we are happy to do that.

I remember a few years ago, not a few years ago, many years ago, at this point, time just magically flies. I think it's five years. And then I'm like, Oh, those… that date is not five years ago. I told you before we started recording that this presentation, when I saw the application comes through, I was really, really hoping for it. And I get like a little bit of a say in what actually transpires but I don't get as big of a say, as people might think. The community chooses and our planning committee, they choose. Planning committee gets 50% vote and our community gets 50% vote.

But I was like secretly, like, really hoping that this would go through because there were many years where I had, like younger adolescence and into the teenage years. That was basically my caseload. And I found that, you know, a lot of people think that students with multiple impairments are the hardest population. That was not the case for me whatsoever. My most difficult population were low vision, teenage students, because they had the biggest uphill battle. And they knew that I had never lived that life. And I had never had those battles. And so it was really hard for me to say like, I know what you're going through, because I didn't know what they were going through. 

Being a teenager is hard enough as it is. Going through those grief cycles plus all the hormones plus the fact that a lot of them are degenerative eye conditions, they deteriorate rapidly during the teenage years because of puberty. Right? So you have all of those things going on. And actually, for a few years, on my professional development, you know, you sit down with your boss at the end of the year, and you say you tell your boss what you want to learn about the next year, it was that specifically. And yeah, because I just couldn't figure it out. And I was… I worked at Cinderella's castle, everybody used to cane. There are like 150, students with visual impairments, you are included, you know, like, these are your people. And I still could not get them to use a cane.

Erin:
So I'm going to add to that, too, is that I totally agree with you on the fact that the low vision kid, those are the hardest, because they can sneak by without having to be seen with a cane and they don't want… You know how it is middle school, high school, you do not want to stand out, you just want to blend in with everybody else. And the aspect of a lot of kids are getting their licenses in they're not. And that's… that's another big grief process. So there's a lot going on. And it makes perfect sense to me. But it just… it has really been on my mind for some time. And how can we do this better? You know, I'm not… I hope that the results of the survey will, will be able to help in some way, I'm not even sure. But still, I'm going to seek that our ways of reaching that population, because they're really needing it.

Kassy:
They are. And the fact that you went to that population themselves, makes the information that much more rich and impactful because we can learn from our collective past mistakes. Because the things that you're doing, I'm probably doing but we don't know each other. And even though we went to different colleges and programs, we're all kind of along the same lineage. And even if you weren't making the same mistakes I was or vice versa, we could still learn from one another so that we don't make those mistakes.

Erin:
Right. As you said to where you had never been there and been through it. It's hard to be a person who is sighted and to say, well, you know, I know this or that. But this might be a way to say, I do know this or that, not to say that I am I know better than you do. But here's what some information that I have from other people and here's how they felt and do you feel like that too? And did that… You know, does that hit a note for you? Just to be able to reach them a little bit better?

Kassy:
Yeah, like a heart centered approach rather than like a dictator approach. Because ultimately, we as the O and M specialists, we have our independence already, and that's what they're striving for, but our independence is going to look different than theirs. And you hit some something really, really important and that this is the time where their lives start to diverge from their friends, or even if their academic students, they may not be college ready, they might fall into that loophole where they might be staying at home, or now they have to go to a post secondary program and not college. And a lot of schools are funded based on how many students go to college. So college is the rhetoric that they hear. And if they fall within that simply because of funding, but they don't get that. It is really hard. So I appreciate the work that you've done. And I cannot wait to learn from you, Erin, I'm going to soak this in. I'm gonna watch it during it, but I'm gonna sit down later, and really take notes. And I cannot wait to hear what you have to say at the symposium. I think everything that you've done is really remarkable. And to be able to bring your you have such different diverse backgrounds and perspectives. And you've worked with such a variety of levels of learners, it's really going to help, and I really appreciate you.

Erin:

Good! I do hope so. And like I said, I'm glad that you're taking the link and hopefully we can disperse it because the more the merrier in terms of the responses. So and I also will say too, is… this is not like any kind of formal study. It's not an academic journal, it's not a scholarly or a scientific study. It's really just a gathering of information that

Kassy:
I want to share. Yeah. And that in and of itself is worthwhile.

Erin:
Good. Yeah. It's… somebody had said to me, is this for, you know, any kind of a graduate program? And I said, Oh, God, no. It may be, it could be at some point. But it's not what I had in mind. I just really wanted to learn.

What Erin would like to share

Kassy:
Yeah, I have my own thoughts about that we can talk about after the vertigo. But were there any other things that you wanted to share with our audience today, any other ways that they can take a step forward into becoming better on him specialist,

Erin:
I guess something that I've had to become more comfortable with overtime is to have the difficult conversations. We're putting up a position with families who maybe want to believe and to see that maybe their child isn't going to need as much help as they seem like they could, maybe they don't need a cane because then they won't have to be as different. Maybe they will be able to do all these things. And we want them to be able to do these things. But it can be very hard to have the conversation to say that we aim for them to have the independence and to have the skills but that the cane is going to be a necessary part of that.

And there are times I'm sure you've seen it, where that is just what the parents do not want to hear. So I encourage people to continue having the difficult conversations and in a thoughtful way and in a way that is understanding and empathetic to what the families are going through. But that we still have to hold our ground a little bit. Gently.

Kassy:
Yeah, catch more flies with honey than vinegar.

Erin:
That's my theory, too.

Kassy:
That's my theory and I've seen it work. In the long run. It works better in the short run the vinegar works better sometimes, but like, you're not there 99% of the time. You're only with your learner for 1% of their waking life. 

Erin:
Right. Right. It has to be impactful.

Kassy:
Yeah, you have to. Well, thank you so much for coming on. Aaron. It has been an absolute joy and pleasure to have you with us and I can't wait, it's just such a joy. Thank you.

Erin:
I'm looking forward to the symposium as well.

Kassy:
I hope you liked that episode. It was such a pleasure to sit down with Erin and learn how she's gone about things to gather the information that she has, if you'd like to take part in the study. It is linked in the show notes below this episode. And of course shall be presenting at the 2023 symposium and I hope to see you there.