A Look Into the Life of an Adult Living with Autism [IEP 007]
For the first half of this episode, we’re joined by Vickie’s cousin, Kenneth Rubi. Ken is an adult living with Autism and he joins us to share a little bit of his experience as a child and then as an adult living with a disability. After the interview, Vickie and I chat about the importance of student involvement in IEP planning meetings and explore situations where they shouldn’t be there. We also dive into who else can be present at IEP meetings and why they belong there.
Full transcript of the show available at the bottom of this post.
What We Cover in this Episode:
- What school was like for Ken when he was growing up, before political correctness became a thing
- How teachers responded to having Ken in their classrooms
- What it was like for Ken to be part of the IEP team when he was a student
- Getting passed over for a promotion and how that felt for Ken
- Why person-first language is the appropriate language to use
- Why it’s important for the student to be involved in the IEP planning meeting (and when they shouldn’t be there!)
- Who else should be present at IEP meetings?
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Thank you for listening!
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Full Show Transcript
Vickie Brett: Welcome to The Inclusive Education Project. I’m Vickie Brett.
Amanda Selogie: I’m Amanda Selogie.
Vickie Brett: We’re two civil rights lawyers on a mission to change the conversation about education, civil rights and modern activism. Each week we’re going to explore new topics, which are going to educate and empower others.
Amanda Selogie: And give them a platform to enact change in education and level the playing field. Hey guys. Thanks of coming back this week. We really appreciate all the feedback, and everyone that’s subscribing. If you haven’t subscribed yet, please remember to go ahead and subscribe. We’re always taking feedback, there’s topics that you want to listen to, we really appreciate it.
So, this is Amanda Selogie.
Vickie Brett: This is Vickie Brett.
Amanda Selogie: So, today we have a very exciting episode for you. We have our first guest ever. We’re actually going to have Vickie’s cousin, who’s an individual living with autism.
Vickie Brett: I mentioned him of couple times, and he’s actually became a subscriber, and started listening, and will text me. It’s been fun, and exciting, that we get to talk to him a little bit. And you and I will talk to him about what he talked about.
Amanda Selogie: Yeah, yeah. So, in just a minute, you’ll hear our interview with Ken, and then we’ll go into a little bit more detail about AIP meetings. So, enjoy!
Hey guys, thanks for coming back this week, we hope you had a great week last week. Today we have a very special episode: we have our very first guest, and it’s his birthday today. So Vickie’s going to go ahead and introduce our guest.
Vickie Brett: I’m really excited today, because I’ve mentioned my cousin Ken. I know he’s already a subscriber to the podcast, and it is his birthday today. Ken, happy birthday! Thanks for being our first guest!
Ken: Well, thank you. It’s a pleasure being here.
Vickie Brett: So, Ken, you are 24 today.
Ken: Yes, I’m getting pretty old up there in the age.
Vickie Brett: You’re getting pretty… You’re still young, you’re okay. So, Ken, I know that you text messaged me. You said that you have listened to the episodes, and you said that you like what you hear, and so I asked you to be a guest and you were totally into it. Tell me why you wanted to come on our podcast?
Ken: Well, I mean the tempting of being the first guest was also very good. And I think that being a part of this could make a difference in a lot of people’s lives in some form, and that’s why I really like this.
Vickie Brett: Well, I think it’s amazing that you’re taking the time as an adult living with autism to come on and talk to Amanda and I about your experiences with the being with autism. So, where do you think you want to start? Do you want to go back back, or do you want to talk about… You’re not in California anymore, so you’re in a different state. So do you want to talk about what it was like in school for you? When you were here in California?
Ken: Sure. School… and when I was growing up, things were a lot different than they are now. Less PC, kids; they were real bullies. They would pick on me all the time. They point and laugh, they tried to pull tricks and pranks on me because they thought I’d fall for it, and I did. But I learned.
Vickie Brett: What-
Vickie Brett: Yeah, I know, that’s hard stuff to talk about. Why do you think… do you feel like you thought they were your friends at a certain point, and then you learned-
Ken: I only assumed that they were just being friendly to me, but later on I figured out now they were not being friendly to me. They were just picking on me.
Vickie Brett: Why do you think that happened? Do you think it was because you weren’t able to express yourself in saying like, “Hey, stop doing that!” Or you feel like you didn’t understand? What do you think you’ve learned?
Ken: Some of the things that I’ve learned that I think were really good, that I learned, was that you better read people’s facial expressions to try to figure out how people are trying to talk to you. And that’s how I learned.
Vickie Brett: And that was hard, right? You didn’t know, really, sometimes?
Ken: No, I still sometimes don’t understand people’s facial expressions, and I always worry that I get something wrong.
Amanda Selogie: How was it in school with your teachers? Did you feel like you had a good relationship with your teachers? Or did you have a hard time expressing what you needed help with?
Ken: It varied teacher to teacher. Some teachers really liked me, because they really tried to understand me. And other teachers, they just didn’t enjoy me being in their classroom at all.
Amanda Selogie: What? Did you have an IEP in school?
Ken: Ah, yes! I had many IEPs in my school, as Vickie knows, she was there for a lot of them.
Vickie Brett: Do you remember the first one that you go invited to?
Ken: That’s way back.
Vickie Brett: Probably in eight grade?
Ken: Yeah, it was about eighth grade. In the middle of getting my IEPs, and they started early monitoring and stuff. Making sure I stayed on track.
Vickie Brett: How did that feel walking into that room, and seeing all your teachers, your mom, and everybody talking about you?
Ken: Well, it wasn’t all of my teachers. When I had my IEPs; I guess they’re not like they are now, but; sometimes I wouldn’t have any of my teachers show up, and it would just be… the councilor would be there, and my mom, and maybe you, and that’d be it.
Vickie Brett: Yeah, no one else when there probably should have been your teachers there, [crosstalk 00:05:40] so that they can-
Ken: I agree, they could have been there. They could have learnt something, but I feel like maybe they just didn’t want to.
Amanda Selogie: Did you feel like the IEP helped you at all? Or do you think there was more that they could have done to help you?
Ken: I think there was plenty of things that they could have helped me with. It was a hard time for me in school, and things like learning repetition… I wasn’t one that learnt from repetition. I learn from other things like traditional effects, things that I could relate to. That’s how I learned, and I guess they didn’t really understand that too much.
Amanda Selogie: So tell us a little bit about life after school, what have you been up to since you graduated from high school?
Ken: I’ve had two jobs. Those didn’t go as well as I was hoping. The first one did, a little bit.
Vickie Brett: Well, yeah, that was when you were still here in California, and then the regional center had helped you get that first job. And, I think you were there for quite a bit?
Ken: I was there for two years, yeah.
Vickie Brett: Yeah, you were there for a long time. Did you like working? What do you think made it hard?
Ken: For me? Working was different in a lot of ways. I kept trying to get a promotion, it didn’t really happen. When I was up for the promotion, my boss that was on vacation came back conveniently in time to just say, “No, we’re not going to put through the promotion training. It’s too expensive, it wouldn’t be worth it.” All this stuff, and at this point, I felt it was just at a dead end.
Vickie Brett: Yeah, was it hard for you to even get the courage to ask for the promotion? And then when you got shut down, it hard to take?
Ken: It was a little hard to ask at first. I thought I would just earn it over time, and they’d just bring it up themselves. I guess that I was supposed to bring it up, and I did eventually bring it up. I’d have liked to go up at places? So I was trying to become a cashier, and that didn’t go as well as I had planned. So my friend, who was a cashier, was training me on the register and all that. Cause she felt bad for me.
Vickie Brett: Ken, I’m sure our listeners are listening to you and are like, “Oh! This guy, he’s like super normal, he’s super articulate.” What do you tell people when they find out that you have autism? Or when you’re trying to explain, “Oh, I don’t really understand this,” or you ask them to repeat stuff. Are people surprised when you let them know that you have autism? Or do you even let people know?
Ken: I always let them know. I know that, cause it’s something personal that they get to learn about me, and I like to share that. And, yeah.
Vickie Brett: Are they sometimes surprised when they find out you have autism?
Ken: They are always surprised, at first. But then after a while, after they get to talk to me over time, they start to see it, and they’re like, “Oh, yeah, this guy.”
Amanda Selogie: He’s been listening to us, and we appreciate that so much. And; I know you probably hear Vickie and I say this all the time; that we’re really trying to promote the next civil rights frontier, that the person first language, and that it’s so important to have a social acceptance and more inclusion in our world. When you hear us; who are not living with a disability; say things like that, how does that make feel? Is that something that you appreciate? Is there something that you would want us to speak about in a different light? What are your thoughts?
Ken: I feel that people with disabilities get a bad rep at some times. Some people just assume they are incapable of handling something themselves, but if you explain it in a way that they will truly understand; that relates to them on their level and not just something that you think was supposed to relate to them; that would really help them. That’s how I like to see things.
Vickie Brett: Well said, Kenneth. Well said. That, and you know, that’s what we try to do, and we just appreciate you taking the time, and sharing your experiences. I’m sure we’ll get some questions from people, and we’ll let you know if any are directed towards you, but we’re so excited that you are our first guest!
Ken: Well, yeah.
Amanda Selogie: Is there anything else that you would like to tell our listeners, or anything that you would just like to say to the world?
Ken: I feel that I shouldn’t do this, but just for… I’d like to say a lot of things. One: I’m all for saving net neutrality. That’s my personal vendetta on some things.
Vickie Brett: That’s very… you’re trying to keep up with politics, I understand that.
Amanda Selogie: I just want to ask you about something, that’s [crosstalk 00:10:02]-
Ken: Yeah, one of my favorite things that really helped me get through life is: I brought up a hobby. I enjoy technology, I love working on it, I love playing with it, I love learning about it. That’s my thing. That’s my… yeah.
Vickie Brett: That’s awesome.
Ken: And a lot of people… Once you get to know people with disabilities, you might learn that they’re pretty cool, and that they really can be a good friend and all that.
Vickie Brett: Yeah, or they could be your favorite cousin. Uh-oh, I said it! I’m going to get in trouble now. All my other cousins are going to be so jealous, Ken.
Ken: Oh, well, they’ll have to fight me.
Vickie Brett: Well, Ken, thank you so much for being our first guest. We are very honored to have you on, and we hope that you enjoy the rest of your birthday.
Ken: I’m going to love to enjoy my birthday. It was really fun being the first person on your podcast, it’s a real honor and I really thank you for it.
Vickie Brett: Love you Ken. Thanks so much.
Amanda Selogie: We’ll talk to you later!
Vickie Brett: We’ll talk to you later.
Vickie Brett: Bye.
Amanda Selogie: Bye.
Vickie Brett: You got to love Ken.
Amanda Selogie: Oh yeah.
Vickie Brett: I’m so happy that he wanted to do this, and it was nice that we were able to discuss a couple different things. So, one of the things we discussed was how he felt in school. So, a lot of our clients are dealing with bullying issues, which he touched upon. And then, what is it like to become part of the IEP team?
Amanda Selogie: Yeah, we talk a lot about what parents can do, or should do, to help their kids with their IEP meetings.
Vickie Brett: And, also, disclaimer: Amanda and I are special education attorneys. We’re not necessarily your special education attorneys. So, the purpose of our podcast is to educate and empower those parents that have children with special needs, and to just really give the community a form of knowledge that they may not have had?
Amanda Selogie: Yeah.
Vickie Brett: So, if you do have questions pertaining specifically to your child, please reach out to a legal professional. Because what we’ll do in this second part is break down some of the things that Ken had said. Sorry, I didn’t mean to interrupt, we just wanted to get that little disclaimer.
Amanda Selogie: Right. Yeah, little disclaimer. Yeah, so we talk a lot about strategies for parents. And one thing that we want to touch on is what Ken touched on, the fact that when the student turns 16, they can become members of their IEP team. And some IEP teams, even as early as 13 or 12. Sometimes middle schools start inviting the student. And, it’s a topic that we always have a discussion with our clients about, we get asked all the time: do you think that we should have our child in the IEP meeting? And there’s pros and cons, obviously, with everything.
We always talk about this person first language and abilities first, right? So, IEP meetings can be a lot of the deficits of the child, and we’re coming up with goals, and it can be; to a parent and a child; it can be perceived as very negative.
Vickie Brett: It’s an individualized education program, right? It’s funny that the individual; who is a minor; isn’t part of that process.
Amanda Selogie: Right.
Vickie Brett: But, it’s because the focus is on their weaknesses. What services, what support, what accommodations, modifications, is the team thinking up to help the child? And so, we get lost on the whole: well, what are the strengths, and how build on those strengths?
Amanda Selogie: Right. And so, sometimes, it can be damaging to a student’s self-esteem if they’re in a meeting where all the people in their lives; their parents, their teachers, their councilors; are sitting there talking about deficits. It can be very, very hard for these students especially if, cognitively, they’re not understanding all the little nuances that are there.
So, there’s definitely some hard times, but there are a lot of higher functioning kiddos that want to be part of that team. Because maybe some of the difficulties that they’re experiencing, it’s better said out of their mouths, right? They can explain better the challenges that they’re facing. For instance, if we’re trying to work on self-advocacy and they say, “I want to be in this IEP meeting to share what challenges I’m having.” It’s important. We’re talking about the class that they’re going to take, of course they should be part of that conversation.
So, one thing I generally say to parents is: sometimes what we like to do with our high school kiddos is have the first part of the meeting be about the goal areas, and the areas of deficit. And then the second part of the meeting where we’re planning out the accommodations, and the classes the students can take-
Vickie Brett: The support.
Amanda Selogie: Exactly. That’s a good time for those students to come in, to express any concerns they have, and then for everyone to talk about: well, these are the things that we thought might help you, what do you think about that?
Vickie Brett: Take it with a grain of salt, right? Because, at times, we have kids that are high functioning. And, kids will be kids, and sometimes they’re manipulative; sometimes just like adults are manipulative; and they want to take advantage of a situation.
Amanda Selogie: Right.
Vickie Brett: So, sometimes I’ll have a situation. With one of my clients just this last year; where because of bullying incidences in the past; he was a sophomore, high functioning, and he had a one-to-one aide. And she was more so a shadow, and he was being really self-cognizant of the fact that there was this one-to-one. But it was really like an extra classroom aide. But he got it in his head that this person was there for him, and he was like, “I don’t need it, I don’t need it.” And, the district actually had to put the kid in conflict with his mom, because they started putting the aide on him for breaks, he was in wrestling. And they were like, “Well, if you don’t want to see her, then your mom has to sign the IEP where the aide is taken away.”
And, so then that’s one instance where it was just like… yes, we did want to hear what the kid was saying, but there was real issues with bullying, and him being pushed, and punched, and thrown down a hill were prevented because there was this adult that was kind of in the shadows. But, per his IEP, they were only supposed to be in the shadows. So then, when the district upped the anty, and basically had this eight on him, it… Before that, she did not go to his wrestling practices. She was on a Saturday morning at 7:00 AM. Districts don’t pay aides to do that.
So this was a very isolated incident in a particular school and district, but you got to take it with a grain of salt, because you need to know what are the issues that this young adult is facing? And how can we better support whatever it is they need, or want?
Amanda Selogie: Sometimes we have kiddos that have trouble expressing things, that maybe they’re having difficulties with certain things. But when they’re asked, “Oh, well, is this difficult for you?” or, “Do you need help?” They say, “I don’t know,” or, “No.” And, so you get that child in the IEP meeting, then the team might say, “Oh, we don’t need to provide anything.” But, maybe the child is confiding in their parents, or they’re confiding in up here, or they’re confiding in one teacher. And they can better communicate that, rather than…
Look, we have parents that come into IEP meetings where they have 20 people at once at the table, and they’re the only one on the other side. It’s intimidating enough for a parent. So can you imagine a child, a teenager, that’s already facing challenges sitting in that room? Sometimes it can be hard. So, I guess we take it on a case-by-case basis on whether or not that child should be in that IEP meeting.
You heard it from Kenneth that he thinks that more could have been done, and more people should have been there to maybe listen and hear to what he had to say. And I think he was disappointed about that.
Vickie Brett: Yeah, we didn’t get too much into it, but Ken; as he likes to call it; was a super senior. So he did graduate with a diploma, and he was held back for his senior year. That was already hard enough. We don’t retain children. Some school districts say, “We don’t retain past second grade!” But here, we have a situation where that particular district, I believe, didn’t want to provide appropriate transitional services for Ken, and just decided when he was 18; and I use this example all the time; where he turned 18, and the district was just like, “Hey, don’t you want to graduate? You’ll have to stay an extra year, but you’re in charge of your rights now, so don’t you want to graduate with your friends? Sign here.” And, essentially, what ended up happening is he signed himself out of having an IEP. And for me being still in law school at the time, and trying to do whatever I could as an advocate, unfortunately was too little, too late. And I’m able to connect with those parents that are in those similar situations, and that’s why we push that early intervention.
We try to get out there and coordinate with parents that have newborns, or two year-olds, or three year-olds, that just recently been diagnosed, because it’s all about early intervention. And, Ken is very articulate, he will look you in the eyes when you speak to him. And that’s a testament to my aunt and my uncle. Who, my uncle, every day, “Ken, you look at me when you say hi. Or when you walk into a room and see…” Just the A-B-A type training that they did? And sometimes, there are help-per-sever rate, unlike a topic, but he’s very smart. “Ken, I thought you were going to talk about your IQ?” But no, he has above average IQ that was affected because of his communication skills. And it’s disappointing, because he was very articulate, and he does have thoughts, and he does have feelings. And sometimes that’s hard for him to articulate it, but when you take the time to peel that layer back… obviously, he’s really comfortable with me and he knows Amanda so, “Ken, I know you said you were a little nervous but you did great.”
But yeah, we just wanted to touch upon a couple of things. Obviously when you’re at an IEP meeting; we’ve said this before; typically at those IEP meetings, there needs to be an administrator who can make decisions on behalf of the district. Sometimes that’s a vice principal, sometimes it’s a district [inaudible 00:20:25] program coordinator-
Amanda Selogie: Usually we say it should be someone from the district, and not just a principal. Oftentimes it is someone that’s considered an administrative in the school, but a lot of times it’s important to have someone from the district. So there are some school districts that are very consistent with having what they call, ‘program administrators’, or ‘program specialists’, that are assigned to the cases. And they are at every IEP meeting.
And the thing about having someone like that, and the reason it’s so important, is because they’re able to make decisions that maybe the school can’t. They’re specialized in the types of programs the district has. Well, yeah. Vickie’s giving me the quotes on specialized because they’re supposed to be, and the idea is that they should know what are all the plethora of options for a student in the district?
Vickie Brett: Or service, [crosstalk 00:21:20], or accommodations, modifications.
Amanda Selogie: Or services. Right. Because a student might be at a school where there’s a resource specialist teacher and there’s not an SAC class. And so, the principal, or vice principal, may be knowledgeable about the programs that school has. But if a parent were to ask about other programs; because maybe they’re not happy about the program, or they don’t think it’s working in the way it should; if that principal doesn’t have knowledge about other programs in the school, then it’s, “Well, we have to get back to you about that.” And then we’re setting another meeting, and we’re having more delays, right? We’re always talking about delays because that’s oftentimes what happens.
So, we like to recommend. We like it when the districts have these program specialists that are knowledgeable about the different programs. And, also, for instance, let’s say we ask for recreational therapy, or assistive technology? If those team members don’t know about whether or not it’s a possibility? It should be. So, that’s where it’s really important.
Vickie Brett: And, another person that Ken had touched on that most people don’t necessarily know can be at an IEP meeting, is any person that actually knows the child. So, the examples that Amanda and I give are: maybe they’re in karate after school, and the kid can follow the karate instructor’s three step directions but, for some reason, when they’re in class they don’t and they’ve had the same goal. So you’d want to invite that karate instructor, and maybe they’re doing something different. Maybe they write the instructions on a little board, or something, and then the kid follows it.
Amanda Selogie: I can give a very clear example; as I think I’ve mentioned this, that I’m a soccer coach; and so almost every single kid that’s on my team has an IEP. And the parents could invite me because, maybe, they have adaptive physical condition APE, or they have physical therapy at school. And the physical therapist; and I’ve seen this actually before, because I have had the situations happen; where I have a team member, maybe a physical therapist or an APE teacher, who says, “Well, this student has had a goal about kicking the ball.” And, if I’m the soccer coach, and I know for a fact that this child is not only able to kick the ball, but they participate in a mainstream soccer game? Then the fact that the student is not making progress on a goal to just simply kick the ball at school… something’s going on. Why are they not able to do it, right? Because we have the idea all the time, parents will say, “Well, my kid can do that at home.” Or, “I don’t see that at home.” Right? We see that different. The schools will often say, “Well, we’re talking about two different kids it sounds like.”
And so, having the perspective of someone that’s outside of the school… because we talk about a soccer team, or a karate team, the kid is learning. It is a learning environment, so it’s not so different. Maybe it’s unstructured learning, but it’s still a learning environment.
Vickie Brett: Right. And I was part of some of Ken’s IEP meetings as an advocate, but mostly as a niece to my aunt, that knew Ken and knew what his challenges were when he was a freshman, and sophomore. And it was too little, too late. I was at the end of law school, and he’d already been in his second year of being a senior. And, it is what it is, but thankfully regional center had taken over post-graduation. But I think that that’s something. And we’ll get into more of the components of an IEP team, and who should be there. But I think that the district coordinator, and anybody that knows the child, is a good place to leave it? Just because Ken had brought it up, and for us to talk about it.
But we really enjoyed this episode and having Ken on as our first guest. Hopefully you guys enjoyed it too? Like Amanda said, please keep on subscribing, and letting us know the different topics. We’ve gotten a lot of feedback, and we’re just really excited that we have the opportunity to do this, and that you guys, hopefully, are gaining some information that you’re using in your lives every day.
Amanda Selogie: Oh, before we go, I know that we wanted to try to have a sign off or sendoff.
Vickie Brett: Oh yeah, right, right, right.
Amanda Selogie: And I thought about something that may be corny, but… I was listening to another podcast. Our friend, Nicole Abboud, has a lawyer’s love company, and one of her episodes was talking about mission statements.
Vickie Brett: Oh, I love that one.
Amanda Selogie: Oh, me too. So shout-out to Nicole, everyone go listen if you’re not already listening. Anyway, I was talking about something, thinking about something that we always say, that we love to educate and empower families. Well, I was running with words and said, “Well, another word that we always say is: equal opportunities.” So, I just want to maybe throw out that our motto should be, “Go out there and educate, empower for equal opportunities.” Or, the three Es.
Vickie Brett: The three Es? That’s how you want to sign it off? I like it, I want to work with it.
Amanda Selogie: We don’t have to say the three Es. But I always think back to one of my idols, Ellen DeGeneres. She always says… she signs off her show with, “Be kind to one another.” And I think that’s so empowering, right? When you hear that. We empower you as listeners, that’s what we try to do and educate you. So, if we can tell you one thing to go and do after you listen to our episodes… If you can go and educate, and empower, more people to fight for equal opportunities, we’ll be happy.
Vickie Brett: I like that. I think we could work with it, because my mind is running. Cause one of our hashtags, as slogan [inaudible 00:27:04], is #opportunitymakers. Because we’re about… and I know at times we’ll say, “Level the playing field.” Amanda has touched on this in prior episodes. It’s more so we’re not trying to say it’s this communistic way that some people see that saying? But it’s more so like, “We,” and this is the JFK quote that we quote all the time, “Not all of us have equal talents, but we should have an equal opportunity to develop those talents.”
And so, we use that a lot in that hashtag, #opportunitymakers, is that our job as special education attorneys is to create that opportunity. Because that child may rise to that level, and may supersede our greatest expectations? And sometimes because of their disabilities, they may hit their ceiling, and that’s just as far as they’ll go. But, if they never have the opportunity to even try? Then we’re not producing citizens like that stronger link in the chain that we’ve always been saying.
So, I love where we’re starting with it.
Amanda Selogie: So maybe, as listeners, if you have… this is a work in progress, as the whole podcast is.
Vickie Brett: My life is a work in progress.
Amanda Selogie: So, if you think; we use a lot of hashtags as well, and we use a lot of slogans; if there’s one that pops out to you that you think sounds good? Maybe we’ll do a poll on Facebook.
Vickie Brett: Ooh.
Amanda Selogie: And you can let us know what you think. So, again, thank you very so much for listening in this week. Like we always say, go ahead and find us on social media, Facebook, or Instagram, at IEP California. We realize we’ve been tweeting and didn’t know it? So now we’re going to actively be start tweeting a little bit more. We’re going to try. And then, of course, our website, www.iepcalifornia.org/blog, is where our episodes can be found. And, of course, Stitcher Radio, Google Play, and iTunes.
So, yeah. Thank you so much for listening.
Vickie Brett: Thanks for listening projectors. Are we going to do that? No? I’m going to play around with it.
Amanda Selogie: You can do that.
Vickie Brett: I’m going to keep doing it. Alright, take care.
Amanda Selogie: Bye.