Self Advocacy for Teens and Young Adults: a Webinar

[Julie] Welcome again, everybody. This is our webinars series from Exceptional Lives. It’s called Real Talk About Disabilities: Issues Faced by Families of Color. And this is… Of course, anybody can benefit from these webinars, but we’re focusing on families of color. And this one is about self-advocacy for young adults with disabilities.

We will introduce Jaleesa in just a minute, but I just wanna go over a few quick housekeeping rules. First of all, I’m Julie McKinney. I’m the Director of Product Content at Exceptional Lives, and we have other team members here helping out. So welcome to the webinar. I’m sure you’re all familiar with Zoom pretty much, but just wanna let you know we’re gonna have live captions on the webinar. If you go to the bottom of your screen, you’ll see this Live Transcript icon. Oops, sorry, let me… There we go. And if you want, you can toggle back and forth between seeing the live transcript come up or not. Sorry. Chat feature is at the bottom also. We’d love it if you could introduce yourself, tell us where you’re from, and you can just make sure to put that onto everyone instead of hosts and panelists so that everyone can see it. But of course, if you have any questions for us or any tech difficulties, use the Host and Panelists chat to let us know. Jaleesa will be taking questions at the end, and for that, if you have questions, we’re hoping that you can use the Q and A function, which is on the bottom to the right instead of the chat function ’cause that makes it easier for us to track the questions and find them easily. If you want to send them anonymously, you can click that box. That’s fine too. And then what else do we have here?

Okay, so I’m just gonna tell you really quickly about Exceptional Lives and then we’ll get on to Jaleesa. So Exceptional Lives is a free platform of resources and support for parents and caregivers of people with disabilities. You’ll notice the poll just came up. This is just sort of a practice poll. So if you can answer that, then we will have a couple other polls happening during the webinar. So this is just to sort of get used to the poll feature. So “time machine or magic wand” is the question. You can interpret that anyway you like.

While you’re doing that, just again quickly about Exceptional Lives. We support parents and providers who care for kids and adults with disabilities. We have on our site, a bunch of different things. You can learn more about services for your child. We have a number of guides that walk you through step by step how to apply for services and government benefits, special education, EarlySteps, SSI benefits, Medicaid Waivers, things like that. We’ll walk you through the process. You will also have a resource directory where you can put in your zip code and find local providers and services… that relate to disabilities. And then we have a blog, Perspective 4 Parents, which is written by parents of kids with disabilities and goes over some, you know, some topics of interest that we know are out there. Most of us on staff have a child with a disability too. So we get it from that lens also. So we really understand what parents are going through.

Here is the results of the poll. It seems like magic wand is the preferred magic thing that you all chose. So that’s great. So just going over our other things. We also have ways for you to connect with other families on social media. We have a Facebook page and Instagram. So we’re trying to get information out to families as much as possible. Another poll came up. Now, if you could just fill this out, just telling who you are, what your role is in regards to your interest in this webinar. You can choose as many as apply. So if you could fill that out.

The next thing. I just wanna tell you we have some new projects at Exceptional Lives. We have a Families and Stories project going on where we interview a family, parent, and a child, if the child is willing, to just talk about some parts of their experience caring for children with disabilities. So we actually are recruiting for families now. So if any of you out there want to, just put your email in the chat, let us know if you’re interested, and we’ll contact you. You can look on our website under Families and Stories, and you can see what we’ve done in the past and what that looks like. But we’d love to have you if you’re willing to do an interview with us.

We also have started a podcast which is very new and we’re very excited about that. We have four very short podcasts. They’re only about five minutes. So please let us know about that. Let’s see. Okay, good. So we have parents and caregivers, we have educators, we have community providers. So this is great. And we have something else listed here. If you wanna put that in the poll, what other role you play, we’d love to hear that. So let’s see. Okay. So if you have any questions, just let us know and just put that in the chat and we will help you with any tech difficulties you have.

But for now, I wanna welcome Jaleesa Alexander. She has a master’s in special education, and she is currently an instructor at the Program for Successful Employment, PSE, at Baton Rouge Community College. She’s been there for four years and teaches a self-advocacy course directly to students every semester. By the way, the program is for high school graduates with intellectual or developmental disabilities, and they have this amazing college program for them. Jaleesa, oh, was someone trying to say something? Oh, okay. Jaleesa has been teaching students with intellectual disabilities, autism, and learning disabilities for eight years, and she is also researching, she’s working on a dissertation for a Ph.D. She’s researching barriers and solutions to work-based learning experiences for students with intellectual disabilities in Louisiana. And she’s also a mom, wife, and lifelong learner. So I’m sure that she can relate to us all in her various roles. So we’re very excited to have you, Jaleesa, and to hear what you have to say. So I will turn it over to you now and welcome.

[Jaleesa] Thank you, Julie, and thank you guys for having me today. We can get right started and jump into it.

[Julie] Okay, I will…

[Jaleesa] So today we’re exploring What is Self-Advocacy? The key and most important point for you guys to understand is that self-advocacy is a component of self-determination.

Self-determination is the idea of a person with disabilities taking control of his or her own life. They begin to make very important decisions for themselves, about themselves, and regarding the direction in which they want their lives to lead. With self-advocacy comes that responsibility that comes with making those decisions and being accountable for those actions. When they begin the self-advocacy process, they can soon begin to see themselves, representing themselves, their views, and their interests. When they begin wanting to make choices and deciding to do things for themselves, it’s very important that we understand and know what it is that we have to do as the guardians, the parents, the instructors, is almost as we have to remove ourselves from the equation and give them enough space to do just that.

With self-advocacy, there’s a level of empowerment that comes to the students that comes to them, whether they’re teens or young adults. With the empowerment, they begin to see that self-advocacy is not just about being independent, but knowing that independence does not mean being alone in the process. Instead, independence means that I can do this, but I also know and recognize that I can have help in doing this journey that I’m going through. So with independence comes responsibility and with that responsibility comes the need and the requirement to use those self-advocacy skills.

Three major skills that I have listed here is speaking up, asking for needs and wants, and negotiating. With speaking up, we address the need for disability disclosure, overcoming discomfort, and seeking self-help, and actually initiating and engaging in all three. So disability disclosure can be challenging. This requires the student and young adult to be able to talk about and speak to their disability in which they live with. With those things, they have to learn, know that there’s gonna be moments in time in which their discomfort, they’re uncomfortable, and there’s others in which they engage with that are not as comfortable with their situation. So speaking up requires them to have a level of comfort and self-confidence that allows them to speak and talk about the things that affect them.

That leads us to the asking for needs and wants. Needs and wants are very, very important, but mostly, we have to prioritize the needs that they have. One of the major needs that all students with disabilities and young adults with disabilities have is accommodations that’s necessary for them to be successful in the various settings in which they journey through, including home, work, community, school settings. In the school settings, they are familiar with getting those accommodations because they have us, they have those parents, they have guardians, administration. We’re gonna make sure that we follow those things and follow the obligations of IDEA to make sure that they get the necessary accommodations. But that looks different as they transition to the work settings. It looks different at home and it looks different in the community when we go to the grocery store, when you go to the movie theatre, or we’re visiting the parks that we have around home. What does asking for needs and wants look like?

And so with self-advocacy, we are pushing them to know and understand that when we disclose our disability, you have to acknowledge and know what it is that you need to go along with that disability. For example, if I have a student that experiences communication barriers, then how do I teach them how to speak up and how do I teach them how to ask for the things that they need? Is there a system that we use at home that could possibly transition over to them in the school setting or transition over to the community settings? Then we train them and we teach them the same things we do at home, we apply them to those settings in which you exist. The other example may be a student that may have a speech impediment. How do I ask for someone to take, and have patience with me as I try to explain myself and engage in it? Practice is very important in the self-advocacy process because it’s not something that we wake up today and say, Oh, I’m gonna be a self advocate. It takes time, just like it takes time to do everything else that we do. We have to take the time to engage in these activities and engage in the opportunities that’s available to self-advocate.

And negotiating is another key skill is being able to recognize that I’m asking for what I need and want, but also that I know how to compromise with those in which I’m engaging with. Self-advocacy is very important because it, one, establishes independence and it also establishes respect. When we speak to the independence that self-advocacy brings about, we have to explore the idea that this student is now learning themselves, knowing themselves, knowing what they need and how they’re gonna get to what it is that they need. But they also explore the things that they need on their own, but also seek again that help that they need to get those things. We don’t just go to sleep and wake up and say, Hey, tomorrow I’m gonna be the best person at asking or requesting these things, but instead it’s, Today I know that I dislike this, or, Today I know that I really wanna do this, and it’s going to the person or the resources to say, This is what I’ve thought about, and this is how I wanna go about doing it, and allowing them to engage in the conversation that they need in order to get to where they wanna go.

With self-advocacy and independence, there’s self-confidence and self-reliance that comes. In my experience with my students from elementary school all the way to the community college, I can see in them when they’re excited about a decision that they made. I can tell when they did something on their own with little to no help. It’s a different kind of self-confidence that builds for the students. Another key important point is understanding the experience that comes with consequences or decisions. For us as adults in their lives, we know what it’s like to have a consequence. When we do something, whether it’s right or wrong, we reap the benefits or we reap the rewards or we have to learn from the punishment or we have to engage in redoing something, and then we have to learn and relearn. And so the same thing needs to happen for them. When they’re making these decisions, when they’re taking these actions, when they are going through the process, we need to allow them to experience those consequences. And we wanna protect them, it’s built in us to say, we’re gonna protect them from whatever it is that they have to go through, whether they made a decision that they shouldn’t have, or if it’s something we know may not work out for them the way we think, we want it to, we still have to let them experience that so they can say, Oh, that didn’t turn out how I wanted it.

With self-advocacy, a level of problem-solving and conflict resolution abilities are opened up, and they start to explore those and experiencing them in a way that we do, and that makes them better for the next decision or the next thing that they have to endure and go through. When students go through the self-advocacy process, they value themselves more. There’s a level of pride that comes through, that shines through, and it rubs off on other people around them. We are excited, we feel the joy and the pride that they have, and we respect them more for being those individuals and reaching for the goals that they have. Next slide, please.

[Julie] Is that the right one? [Jaleesa] I think it was one before. [Julie] Oh, sorry. Sorry about that.

[Jaleesa] So this is where we play a major role as the family members, guardians, community helpers, and workers. We should always be encouraging and supporting self-advocacy. We are responsible for providing those opportunities for the students to get this skill built and leveled up. If we are not providing the opportunities, then they will always be in a position to be dependent on us rather than working toward that independence. Opportunities look different in a different environment. What is it at home that I can give them an opportunity to do? Is it something at school, work, or in the community to give them a chance to speak their piece, to voice their opinions, to let me know their preference? Do they have an opinion that they wanna share with us or amongst the group? Let them do that. And when we do that, they feel good. And in the beginning, trust me, it’s not gonna be very pretty. You’re gonna be like, What are you talking about? But it allows us to ask them questions and to open their brains up to speak to what it is that they’re trying to get out. What is a way that I can help them, whether it’s through visuals, whether it’s through graphics, Do they like technology? What are some ways that I can help them explore these things? One of the examples that I do in class with my students, I always ask them, How do you wanna put this in your binder? Do you want any page protectors or do you just wanna punch some holes in it? And then sometimes, it’s something as simple as that that makes them go Oh, she’s asking me how I wanna do this and it’s like, Oh I really like the page protectors. And some of them kind of like, No, I want holes in my paper. So it’s small little things like that that provides them the opportunity to give their preference and to speak to something that they like and know and feel good about it.

One of the very, very important things that I do challenge in the transition level when students begin to start their transition plans, involve them in the IEP meetings, in the IEP process. Through their process, although it seems a bit scary or challenging that they’re not gonna understand the language, bring it down a notch. When they’re present in the meetings, give them a chance and ask them that question. So what do you think about this? Or what kind of jobs do you think you would like doing? Show them some pictures if there is a communication barrier. Hey, here are some different jobs. Which one do you think you would prefer to do? And it gives them a chance to have their voice in that IEP, because at the end of the day, the IEP is for them. The transition plan is for them to get out there and do the thing that it is that they would enjoy and wanna do the most. But it’s also very important that during that time that you address and talk to them about the skills that they can do or the skills that they currently have, and then it benefits them in the meeting to know, You’re gonna need this skill. I see you pointed to this job or you mentioned this job, and it begins to get them to explore more and take a responsibility for what they want to do. When there is an opportunity and a choice has to be made, give them first dibs. I know sometimes it’s easier for us to say, Oh, today we just cooking. We’re gonna have some barbecue and some rice dressing and some other sides, and that’s just it for dinner. If you feel like you wanna ask them, Hey, do you have an opinion about dinner? Give them a chance and let them explore. Well sure, barbecue is fine, but I was thinking we should go for maybe some baked chicken. Have those conversations. Any time that you can give them an opportunity, give them that opportunity.

And this is the part that I love telling parents, we have to let go. I love telling some of the old instructors when they’re letting their kids go from high school. When they come to me, I’m like, let them go. You gotta let them go and overcome their fear, not only for your sake, but for their sake also, because we have to realize, and the scary part is, as a mom, I know we’re not gonna always be around. And so when we let them go, we wanna know that we did a great job at helping them to navigate and engage and be able to talk about themselves. The scary part is I have students that come to my program and I may say, So what’s your disability? Because I want them to be able to talk about it and they’re like, I don’t know what you’re talking about, or some of them may say, they don’t realize they even have a disability because what we do as parents and guardians and family, we try to protect them from the world around us. And then I’m the bad person, ’cause I’m having the conversation like, Oh well, let’s see. Let’s look at your paperwork and let’s talk about this. Let’s do some research point, and it’s not too late, but we still would do better if we exposed them to what they have to go through and face moving forward. When you get to the level that I’m at in transition, there are things out there like the office of disability services that’s there to help our students but they can’t help them if our students don’t even know what it is that they endure. All right? They have to be able to believe in themselves to successfully self-advocate but it starts with us. It starts with us providing those opportunities, letting go, and helping them overcome the challenges and fears of self-advocating. Next slide, please.

Self-advocacy can happen at any time. There’s no age limit, whatsoever. I have a 5- and 8-year-old, and when I tell you, they trump me at self-advocacy, especially my 5-year-old daughter. She will come through real quick and let me know, Mama, I don’t like this, I’m not wearing this, I don’t want this, and I’m like, hold up, wait. You know, we gotta draw the line somewhere, but I love it. I love that she’s able to speak up, and I love that she’s able to express her expressions and her feelings. And so I encourage you, even if you’re, you know, you don’t have a teen or a young adult and you do have a student that’s in elementary level, early as possible, get them going. Let them know what’s going on. Allow them to express themselves. There’s no age limit. You don’t have to wait to say, oh, it’s 16, you know, they’re gonna be in transition, no. Right now is the perfect time. Allow them small little choices, whether it is, Hey, you wanna pack lunch today or you wanna eat lunch at school? I have a son, he’s eight, he’s nothing like my daughter, but there will be times when he will step out and say, “Look mom, this is what I wanted to do today.” One day I was like, Hey, let’s go outside and play. And he was like, “Well, “I was thinking I wanted to play with my Legos instead.” And I’m like, Oh, okay, well, that’s fine. And he’s like, “Oh, okay.” It makes them wanna make choices and express themselves. So again, you know, it’s no age limit on it and it’s definitely never too late.

Again, I have students that come and we talk and they may not know or they don’t know the extent of their disability, but we get them going in the process of talking about it, being able to disclose, understand, and know the advantages and disadvantages that comes with the disability so they can become comfortable with it. One of the things about self-advocacy is it’s not for everyone, and that is okay. It’s okay that it’s not for everyone, but we have to be patient and go through the process. We’re gonna know if it’s for our student or our teenager or our young adult, and then we’ll know if it isn’t. And when it isn’t for them, what ways can I support them and help them and still allow them some room to be able to do things for themselves? Next slide.

Self-advocacy should take place everywhere from home, work, school, and community. It starts with us. It starts at home first, again, allowing them to express needs, wants, preferences, opinions, expressing themselves in a way that’s respectable and knowing how to engage with their family as well as the other students that they come into contact with at school, knowing how to deal with adults that they have to deal with, and then as they transition and go into work-based learning experiences, community-based learning, they start to meet other people outside of the school, whether they go to parks and movie theaters. Do they know how to ask for accommodations and things like that? So the more we practice at home, it builds up our skills and make us better in our work, school, and community environments. Now, it’s not to say that everyone in these other environments are gonna understand. And that’s the biggest part, that sometimes these places are gonna be more challenging because we don’t know that the world knows. We don’t… Some disabilities are visible, some are invisible. Those invisible disabilities, people may not know and assume we don’t walk around that says, Hey, I have a hearing impairment. Hey I have autism, on our foreheads or on our t-shirts. So sometimes it will be a backslide for our students because in some of these environments, especially the work and the community environment, everyone isn’t trained and everyone isn’t aware and everyone isn’t patient as us to go through the process with them. So when they are transitioning and going into the community, allow them the help and the aid they need to understand the other people that they are dealing with and interacting with.

Again, self-advocacy is challenging. It’s not something we just wake up and say, Okay, today you’re gonna be on your way. You’re gonna be the best self-advocate you can be. It’s not gonna always be like that. So it takes time, it takes patience, it takes resilience. We have to work at it. It’s not just a skill that I can put it on paper and I learn how to be it. I think I may, 30-something years, 31 years old and some days I still struggle with self-advocacy because I’m juggling on, What is it that I want someone to know? What is it that I need someone to know? And I have to ask myself that question, you know, You know, do you wanna put it out there? And it’s a process. So we have to allow them to go through that process of understanding themselves, knowing themselves, knowing what they need, and knowing how they gonna get there. Next slide.

Self-advocacy matters. There’s benefits to self-advocacy. When they practice self-advocacy, it helps them determine their level and ability to live and work on their own. Even if it just mean moving from the bedroom and maybe building a little piece of room outside of my parents, at least it’s my own space and they don’t have to go far or they might want an apartment down the street from, you know, just to have something different and to call their own. The more self-advocacy they do, the better they’re gonna become, and it’s likely that they will be like, Look, it’s time for me to move out. Like, they’re gonna feel good. They’re gonna be strong and confident in themselves. Self-advocacy, let others know. As a parent, we get comfortable knowing that we know that they’re doing what they supposed to do and that they can handle themselves and handle their own. That doesn’t mean that we’re out of the picture. It just means that we did our job and that we are there when they need us to be. Self-advocacy gets us achieving those goals, and it’s a constant, active process of them participating in their own lives. What’s better than having control over the things that you desire to do and wanna do, and then having a team to root you on and be with you along the way? Self-advocacy is, I love this picture, it’s just the umbrella of everything from jobs to living on own, relationships and education. The better I become at self-advocacy, the more I understand myself and the more I can help others understand. And then I can do it in any environment in which I exist. Next slide, please.

The last slide is some resources that are very good and helpful. When I started my transition process in learning about self-advocacy and self-determination, it was the Office of Disability Employment Policy, ODEP, and the National Collaborative on Workforce and Disability for Youth. They have some very useful and resourceful information on their websites. The 411 on Disability Disclosure Workbook, it’s a PDF that you can download from their website, and it has very good and helpful information on talking about disability disclosure, as well as getting students to understand the advantages and disadvantages of disclosing and being a natural self-advocate that comes with… It comes with time. I also wanna mention going and signing up for the newsletter for the Governor’s Office of Disability Affairs. They also have a monthly newsletter that has many resources and of course, Exceptional Lives. Make sure you log onto their page and check out their different resources.

It’s been a pleasure. I hope I was very helpful to you guys. Again, if you have any questions, please feel free to reach out to us and let us know. Thank you.

[Jackie] Julie, you’re on mute. Sorry, folks, just give us a second. [Julie] Can you hear me now? No? [Jackie] Yes. Thank you. [Julie] Okay. Sorry, everyone. I had a little trouble unmuting. [laughs] Thank you so much, Jaleesa. That was really comprehensive, and I really like the, you know, just sort of easy, compassionate way you talk about self-advocacy and give us just some nice ways to start getting our kids able to advocate for themselves. So thank you so much for that.

We do have a few questions and we have four. So we’ll try to get these in and I will tell you the first one. “My son’s boss does not like it when he self-advocates. “How do I help him deal with his boss?”

[Jaleesa] That’s a good question. So the first thing I would suggest, it seems like the boss doesn’t understand, and I would ask what disability it is that your son has and does the boss understand and know? And then I know your son wouldn’t want you to, but the first thing I would suggest is possibly going to his boss when you have an opportunity to ask what is it that you can help your son do to help him communicate, or is there… What is the barrier that that the son’s boss dislike? But at the end of the day, some bosses may not talk to the parents at all. Like, I hired you and you’re who I’m gonna deal with. And so, it’s just telling him to remove any personal feelings. Sometimes we just have to remove the idea that it’s perfect, and then just help him. What is it that I need to tell my boss today? We tell my students, Practice what you’re going to say. What is it that you have to communicate and get through? Timing matters, are you arriving to work at a timely manner to talk to your boss? Are you just throwing in something on him, or throwing something on him? You kind of have to know the boss too. Are they an email boss? Are they a in-person boss? Is this a busy boss? “Oh, I got, I don’t have time, “I don’t have time, I don’t have time.” So, like, they don’t wanna engage in conversation. So it’s kind of like you wanna rehearse what you have to say and figure out the best timing to give that to your boss. Will your boss feel more engaged in the morning? Maybe you don’t have to work that morning shift, but you work later in the evening, but you know your boss is better to communicate with in the morning. So it’s kind of like knowing the other person too. And it may not be your son. It just seems like it’s the boss who doesn’t understand. So for example, I had a student who had cerebral palsy, and sometimes his speech could be slurred and the boss wasn’t the best temperament. And we learned that the boss was better, easy to talk to at the morning, in the morning when things haven’t picked up. And so that’s when we encouraged our student to talk and go talk to them at this time or make an appointment time depending on what the matter is. I hope that answered your question. I’m gonna try, if Julie or someone can, I can screenshot the questions and I can kind of answer them better.

[Julie] Oh, well, yeah. We’ll have them for you, yeah. [Jaleesa] Okay, okay. [Julie] Yeah, no that’s fine. Yeah, if we don’t get to people’s questions, we can get the answers to you later, but… [Jaleesa] Okay, great. [Julie] I think we have time for another few, if we can go through. [Jaleesa] Okay, go… yeah, sure.

[Julie] Yeah. So one is, How do you help a high school graduate transition their advocacy skills to a college or work setting? We know that in high school, a lot of stuff is done for them but it changes in higher ed. So maybe you can speak to that. [Jaleesa] Yeah, sure. So the first thing is figuring out what’s gonna be next. So right now in high school, I encourage talking about what’s next. And if they wanna continue education, let’s talk about what college looks like and what the steps that you have to go through. So one of the things I can tell you is leaving high school and transitioning to college, if it is a regular program and they’re enrolling in a trade or they’re enrolling just in a few credit hours, the office of disability is gonna be their best friend. The office of disability will allow you to be there with them but they wanna hear from the student. And there is some paperwork that is required in order for them to get accommodations. There’s no IEP meetings, but it’s very important that they have their paperwork with them. The first step is definitely reaching out to that office of disability services before even getting to that college and knowing who is gonna be a possible counselor. Who is gonna be some administration people in those positions, and then it works the same. The office of disability services do their best to try and make sure that the staff and the agents are trained and well-versed, but to be honest, I have colleagues in the college that’s not. They don’t know. They may have been working there for years and years and years and they’re not used… and understand accommodations. So sometimes it takes the student to step in and make it vocal or provide the instructor with some things that they need and how they learn best. Most instructors are generally open-minded and receptive, but the student has to make the first attempt. So college numbers are much bigger than being in high school. So you have to make the first step and attempt. In the work setting, the only thing that’s slightly different is, you’re working with people from all different kinds of backgrounds, and you’re also working with people that may have never worked or been around someone with a disability on that level. So it makes it easier to learn the people that you’re working with. One of the things that I tell my students is not everyone is your friend and not everyone is patient and not everyone wants to know. And that’s fair. But if this is gonna affect you in your work, then you have to speak up and voice those things. Not everyone deserves their trust. That’s another key point. Not everyone deserves their trust. Trust has to be gained. And is this person someone that I can trust with what it is that I’m going through? Another key thing in a work setting is, Is this person.. Does this person matter to me getting paid, to me getting a promotion, or to me getting the accommodations that I need? If these people matter, and I say yes to each of those questions, then I need to find a way that I’m most comfortable with speaking or talking to them. Again, my favorite thing is rehearsing. Rehearse those things prior to getting to those environments.

[Julie] Thank you so much, Jaleesa. This is great. Just quickly. We’re gonna take one more quick question. We have some really good questions in here that I don’t wanna lose. So what I’m gonna say is we’re gonna put up the poll in just a moment. We would really love everyone’s feedback on how this webinar went. So if you could please answer the poll. But we are gonna ask Jaleesa one more question, and then I’m just gonna give you a sort of close-out, but then after that, we can stay on. So if those of you whose questions we didn’t get to, we can stay on and keep going for a little bit after the 12:45 mark, if you can. If not, we’ll get the answers to you.

So the next question, Jaleesa, the last one for now is a really good one. How would a self-advocating IEP look like, a self-advocating IEP goal? [Jaleesa] Okay. I would suggest a goal would be, for example, allowing the student to make, or observe the student showing a preference or selecting a preference, given 5 out of 10 opportunities. So if you give them five chances to make a decision on their own, then observe that and see that they’re making those decisions. One of the things that we observe is when they are given an opportunity to make a decision on their own, when they’re given an opportunity to ask questions or to voice their opinions and they don’t, then we can say that they haven’t achieved the self-advocacy goal that we want them to. So if I even say today, the student will make, for the 9 weeks the student needs to make at least 10 choices on their own, can I observe the student doing that? Even when, or I may make the goal, the student needs to be able to tell the instructor something that they would like to do every three weeks regarding something that deals with their work. If it’s at home or it’s tell them that they dislike something, that they like something, that they prefer to do something over something else, giving them choices and observing whether or not they are being able to express their desire to do something else, their want or need for something else. You can have the IEP goal as, allowing the student to ask for an accommodation that they need, that you may purposely forget that this student needs read-aloud services. Will the student be able to say, Hey Ms. Alexander, you forgot to give me or I need you to read aloud for me.

[Julie] Great, thank you. Thank you, Jaleesa. So we have another couple of questions that we can stay on and answer if you like. But for now, I just wanna let you know about the rest of our webinars in this series. This is our first one. We have 12 altogether over the next three months, four months, and these are some of the topics, and I have another slide here with some more of the topics. Oh, there we go. So you can find it all at our webinars page. The link is there. We’ll put it in the chat also. But just wanna let you know that those webinars are coming up and we hope that you will join them and tell your friends about them. Some of them relate to younger kids with disabilities. This one was sort of more for the teenage set, but we have some for all age groups. So please take a look, and if you could share with people you know who might be interested, that would be great. We’d love to see as many parents as possible who will be helped by these webinars. We also just wanna thank the Wilson Foundation. They supported this webinar series. They’ve done lots of great work in the Baton Rouge Capital Area, and so we thank them for this opportunity to get these amazing speakers together for you. So yeah, the chat has our webinars page, and just wanna give a big thank you to Jaleesa for this. Jaleesa herself is actually doing another webinar later in the series. So you have a chance to hear her again, if you want to, and she’s gonna be talking about work and life skills for after high school.

So I guess, so I just wanna thank everyone for coming. Our 45 minutes is up. So thank you so much. I hope we see you again. But for those of you who want to stay on just for another few minutes, we can answer these other two questions. So we’ll just continue. And then if people wanna say more stuff or comment, we have a 15-minute window where Jaleesa has agreed to stay on in case there’s still stuff that we wanna pass on.

So Jaleesa, I’m just gonna ask you, This is a great question. I’m sure that you can answer it well with your experience with your daughter. So, “When kids are younger, “how do you teach them the difference between self-advocacy “and having to follow the rules teachers set down?” [Jaleesa] Excellent question. It can be challenging for them. Like okay, well I know I can express the things that I want, and it’s okay. One of the things I tell my daughter is, well, there’s your opinion or there’s your feelings, and you’re entitled to them, but this is how this is going to go. This specifically has to go like this. So getting them to understand that the teacher is the authority and letting them know what authority is. We have to respect. The key word is respect and understanding what our role is when it comes to self-advocacy. It’s okay. If they’re younger and the teacher says, Hey look, we’re gonna start, we’re gonna take out our books, and they may say, well, I’d rather this, and that is perfectly okay. And we have to say, Well we can get to that later. The teacher also has to understand the type of student that they’re dealing with, because it comes with… You have to draw the line between whether it’s a behavior thing or if they’re just a strong self-advocate. And teachers have to be aware that if this is just a strong self-advocate, then I can address it and say, Oh, thank you for expressing yourself. Thank you for telling me what you would like to do. That’s not the time right now. How about, you know, we do it this way, and then maybe if we have time later, then we can get to something that you like or would wanna do instead, or we can figure out a time for that. So it’s just making sure that they know limits and boundaries and when they should. Again, it’s okay for them to express feelings and opinions, because again, the more practice they have at expressing it, the better they are. Now, if it’s done aggressively and they just don’t wanna do what the teachers says, then we have to figure out, is that a behavior issue that needs to be addressed versus them not discerning between self-advocacy and following rules. [Julie] Thank you. Thank you. Great question. Great answer.

This is a question, Jaleesa, that came in on another channel and here it is. “One of my children has an invisible disability, “which I know you covered a little bit before. “How do I support his wish to maintain his privacy, “but also help him advocate for what he needs?” So it’s that disclosure thing, isn’t it, yeah. [Jaleesa] Okay, good question. So there is a level, again, it goes back to that trust, knowing when to and be able to express, Is this something I want known or unknown? For example, I’ll use, I have a student who started off, he was taking other classes at BRCC, and he never went to the office of disability services, and it was kind of because there is some things, some disadvantages that come with disclosing. You don’t wanna be the object of curiosity. You don’t want people feeling like they have to go the extra mile or do more. And so we had to wind back and say, well, what is more important? You being successful or you feeling like a few people are gonna have some extra questions? And so it was, Well I really wanna be successful, and like, okay, so we have to go this route. And does that mean that anything or things are gonna go wrong in that case? It’s possible that people will have more questions than we want them to have, but we have to be able to say, you don’t need to know that. And it’s okay for them to say no, because we practice in my class. One of the things that we practice is we go through different scenarios, and there’s some scenarios where I’m like, would you say yes or no? And they like, No, they don’t need to know or they shouldn’t know. And so sometimes people are gonna ask questions, for example, they may say, Well I see here on your paperwork, you have epilepsy. Did you have a seizure lately? You may not wanna disclose that and it’s perfectly okay. It’s none of your business. And so it’s a way to say no, and it’s a way to say, I don’t feel comfortable, or I don’t feel that’s something I need to address or answer because that’s not gonna help me get what I need. So it’s very important that he focuses on what it is that he needs and how to ask for what he need, and if they have more questions, figuring out the underlying reason for the questions. But I think if he knows how to steer the conversation and focus on his abilities and what he needs to be successful, then it leaves them no room to ask the additional or unnecessary questions. [Julie] Okay, great. Thank you. That was really helpful, Jaleesa. One more question. And we have still a little bit of time. So after this, we’re gonna open up your mic. So you can unmute in a minute and just, you know, we can talk, have a little discussion, share your comments. We’d like to make this participatory and interactive for this last bit for those who are still here. So the last one is, “How would you start preparing a younger teen, “like a middle-schooler, to self-advocate?” So I guess while they still have the supports of high school and middle school, like how do they… What can you start them with? [Jaleesa] Younger teens, middle-schoolers, are a little more complicated. I noticed in my experience, going to different middle schools, or being around middle-schoolers, they go through a age of, I don’t know, and they go through the age of, I don’t wanna go. I’m just gonna stay home. And so the biggest thing is putting them in position where sometimes we just have to push and say, Hey look, today we’re doing this, and when we get to the store it’s like, Hey, so what are some things that you wanna pick up? What are some things that you would like to do, or making it a day of ‘x’, like, for example, with my niece, she’s, you know, she’s going through the middle school thing and so one of the things that I tell her mom to do is be like, pretty much, Hey, these are the things we’re gonna do. We’re either gonna go to the movies, we’re gonna go to the spa, or we’re gonna go to the mall. Which you wanna do? So it’s you having to provide the opportunity, but still giving them the room to make the choice. Middle schoolers, you can kind of pick up on, are they willing to make the choice? Are they willing to do these things for themselves? It makes it a little easier, but sometimes some middle-schoolers need more of the push to do it. So sometimes with middle-schoolers, I also suggest making the questions, asking the questions. So one of the things is you have to change your questions around a little bit. So versus a, How was your day?, giving them the time, you give them the options. Like, so was your day joyful? Was your day entertaining? Was your day… And then they’re gonna say, Hmm, Well I guess it was entertaining. What was entertaining about it? Tell me about it. And so you’re engaging them in conversation, and then you’re putting them in position to speak, and then sometimes you have to say, Well, do you feel like talking about it? And then you say, and then you give them a time. Well, hey, I’m gonna be available to talk about it Monday at this time and then Wednesday at this time. Pick which one and we’re gonna talk about it. And so, you know, you’re giving them the opportunities, and then it may feel like they’re making the choice, and it’s on them. Like, Oh, I’m in control of this. And in the beginning, it’s really you kind of setting things up, but then they become more comfortable like, Well hey Mom, I got to talk to you about this, or, Hey Dad, I got to talk to you about this or, Am I going to, well, I need to talk to Ms. Alexander about this, and I know I can go talk to her because I feel comfortable now. So sometimes it’s just us making those opportunities for them, but projecting the options that they have and making them realize that although they’re making the choice for that option, it’s really us setting them up to be comfortable to continue the process. So by the time they make it to high school, it’s easier. I hope that helps.

[Julie] That’s great, thanks. So it sounds like sort of helping your child feel comfortable talking about themselves and their needs is like the big early piece to this from what you’re saying.

[Jaleesa] And it’s very important, like I mentioned, the invisible disabilities are the hardest one, because again, they don’t know. They’re not walking around with signs and things across their t-shirts saying, Hey, this is what I have and this is what I am, because at the end of the day, our disability does not define us. And I think in my process, I have a hearing impairment, whatever, in one of my ears. So you know a lot of times I have the words on the TV, and it’s my 8-year-old, that’s like, “Mom, those words are distracting.” And I have to go, hey look, I need the word. Even though he’s eight, I have to explain, like, I need the closed captioning, you know? And some days I gave in and go, okay, we can watch without the words. Let’s just turn the TV up and we’ll go from there. And so sometimes even the smallest people who don’t understand, we have to open up and be able to give a piece of ourselves, so that they can understand, and at the end of the day, be okay with knowing that everyone will not understand, and that is A-okay. But you did your part and you just taught them to be able to speak to themselves about themselves, and again, keep pushing, even though it gets challenging and frustrating, we still have to keep pushing them to be the best self-advocates that they can be.

[Julie] Great, great, thanks. And that sort of flows right into our webinar next week will be about helping teens and young adults tell their stories as a vehicle for self-advocacy. So that’ll sort of flow right into what you’re saying. But I wanna tell people that you can unmute now and just comment, talk, ask a question. This will be, you know, we have a few minutes for discussion, if anybody wants to comment or say anything.

Real Talk About Disabilities:
Issues faced by families of color

These free webinars are for parents and providers caring for children with disabilities. Hear from professionals in the Greater Baton Rouge Area addressing topics that concern their community, such as mental health, racial disparities, life skills, and youth services.