Parent Panel: A Discussion About Advocacy Webinar

Stella: Well, thank you all so much for joining us today. I’m Stella Beard, the assistant director for Kentucky SPIN, and we have a great presentation for you all today. Before we get started, though, if you would just, somebody would just put in the chat box, that you can see us. This is the first time we’ve actually used our webcams for one of our presentations. So if one of you all could just get in there and, yes, we see you or no we can’t see you. So we will know whether or not that’s working. [00:00:38] And before we get started, I’m just going to tell you all a little bit about Kentucky SPIN. And let you know that we are Kentucky SPIN, which is the Special Parent Involvement Network. We are the parent training and information center for the state of Kentucky. [00:00:55] We are funded by the U.S. Department of Education, and we have been the parent training and information center since 1988. And that is when Kentucky first received that PTI grant. [00:01:07] So we work with families with all types of disabilities birth through age 26. And we work with families and parents and also professionals. [00:01:17]No one has chatted with me, so I’m still hoping someone will tell me if you can see us or not. And hear us. That would be good. Just to know that we’re all a go with everything. [00:01:26] At Kentucky SPIN we do not act as attorneys. [00:01:30] Oh, I see, yes, we see you. Okay, good. [00:01:33] We do not act as attorneys. However, what we do is we empower families to effectively advocate for their children and we provide peer support to help families access needed information and resources. [00:01:48] And you’ll hear today, through our parent panel, we are always wanting resources as families and that sometimes is so hard to find. And at Kentucky SPIN, we have, I believe some of the most amazing resources available for families. [00:02:04] The main thing that we do though, is we lend a listening ear. We talk to families on a daily basis and sometimes somebody just wants to know that someone is hearing them and listening to them. So that’s what we do, but I love this, together we can accomplish great things for our children. And none of us have all the answers, but we are all working through this pandemic and adjusting as we go. These have been very trying times, for us, during all of this. We’ve all had to learn new things. And so, being there for our families is what I feel like Kentucky SPIN does best. [00:02:42] Just a few little housekeeping tips that I would like to go over with everyone. Because this is a little different format than what we’ve done in the past. We want to make sure that, you know, we all stay focused on what our goal is today and what we’re trying to accomplish. [00:03:03] But we want you to speak from your own experiences. And do not share anyone else’s story. Everyone is muted, and we won’t be unmuting anyone, but you do have the option of putting questions in the questions box, and we will do that. But when you do type that question, make sure that you’re speaking from your own experiences and not sharing anyone else’s story. [00:03:26] And we know that these are ever changing times right now. We have a lots of different webinars with lots of different topics. Today our topic is advocacy. But we’d like to keep our focus on advocacy during this presentation. If you have a question, please type it in the question box. And just to let you know, we may not get to all of the questions, to answer them right away. But we will follow up with you after the webinar to answer, if we don’t answer your question today. [00:03:57] And please keep your questions positive, we do not want to do any school bashing or naming a school or an administrator. Wwe want to keep this positive and how we can affectively advocate together, collaboratively for our children. [00:04:13] And we will have a survey following the webinar today, we would ask you to complete that for us. It really helps us know what you think about it and how we can improve. Or some, maybe some things you would like for us to talk about in the future. [00:04:28] And that leads me into, there will be an opportunity for you to complete a needs assessment that Kentucky SPIN has completed. That’ll help us decide other future webinar topics, and that’ll be included following the webinar in an email that we will send to everyone. Also with additional resources from today. [00:04:50] So I am so excited about this presentation. And so I want to take a few minutes and introduce our special guest speakers to you before we turn it over to them and get started with our questions. Our first speaker that I would like to introduce you to is my dear friend, Katie Bentley. [00:05:11] Katie is a mom and a nationally recognized disability advocate. She has been working with families who have children with disabilities across Kentucky for nearly 20 years. And she is currently the public policy coordinator at the Commonwealth Council on Developmental Disabilities. And Katie and I go way back, we were really good friends and I am so excited of course to share this platform with Katie, but that we have continued our collaborative friendship, not only regarding advocacy and other family things, but just as, as personal friends also. So I’m very excited to have Katie with us today on our conversation. [00:05:51] I think she is going to bring a lot to the conversation today as we get started. [00:05:56] Our next special guest is Leroy Patterson. Leroy Patterson is a father to Kendall who is 11 years old. She is a beautiful girl that has a million and one questions every day and a heart that loves everyone. She will be entering middle school next year and is excited for the challenge. And Leroy and I have never met personally, but we share a common thing and that is that Kendall, his daughter has Williams syndrome and my son Clayton also has Williams syndrome. And we’re excited to have a father on our panel today to represent us. I think that is going to be wonderful. [00:06:37] And, our next special guest speaker is Andria Jackson, and we’re very excited to have Andria with us today. She is a proud mother of two awesome young man. Andria served in Fayette County public schools for over 14 years. She is currently the community engagement coordinator for the Prichard Committee for academic excellence. And Andria and I were at a meeting together, earlier, maybe it was earlier this year and, had never met, or didn’t think we had met. But then we found out that she knew my son Clayton from years ago when we were involved and lived in Lexington. And so that was kinda neat how all that came all back around. So we’re really, really excited to have Andria here with us today for the panel. [00:07:26] Before I turn it over to these wonderful members on our panel today. I want to ask a question and so under your dashboard, you will see a little box that says poll. I’m going to launch that poll and we want to know who is here today, with us? So if you can go to the poll section on the dashboard and answer the question who is represented here today? And I’m going to open that now, I think it’s launched. [00:07:58] Okay. Okay. And let’s see, poll must be closed, okay. So. Once you answer, that, oh, I see it coming in now. It works! This is the first time we’ve done a poll. So I love, love, love this. So go ahead. I’ll give you maybe just a couple of more minutes to answer that question, and then I’ll give you all the results from the poll. [00:08:24] So who is represented here today? We kind of want to know who we’re talking to. Okay. Just a couple more seconds. [00:08:34] All right, well it looks like we’ve got, almost the majority of people here are professionals who work with a disability. We have 9 percent that are parents. So I think we’ve got a good group represented here today you all, as we get our conversations going, knowing that we have parents here. We have professionals here. We have people with disabilities here. So I think that is great. [00:09:01] So without further ado, I wanted to go ahead and get some conversations started with our panel members today. Can everyone hear me on the panel? [00:09:12] Leroy: Yes. [00:09:13] Katie: Yes. [00:09:13] Andria: Yes. [00:09:14] Stella: Awesome. Awesome. Okay. Well, our first question, when it comes to you all, and then we’ll kind of go round robin. Andria, we’ll start with you on this one. And then we’ll kind of all jump in and give your answer. [00:09:28] But what have you found that has helped you handle difficult situations in your advocacy journey? [00:09:36] Andria: Thank you, Stella. One thing that I’ve found to be useful is relationships and partnerships. My son was first diagnosed in the third grade and it was, you know, new territory for us all. But it was really important that we establish relationships with members of school. And also, you know, we started with a pediatrician, but we found it would be better to, seek treatment from a behavioral health specialist. And we’ve had the same one for a very long time. So just keeping some really strong, positive relationships around him has been helpful. [00:10:14] Stella: That’s great. That’s a wonderful answer. I love it. Leroy, how about you? What has helped you handle difficult situations as you have dealt with things with Kendall? [00:10:24] Leroy: Thanks Stella, and thanks for having me here this morning. [00:10:28] I worked all night and tried to get a little sleep this morning. So this is all new to me. The biggest thing I’ve found is, you know, I’ve joined a couple of sites on Facebook and a couple of other media sources that, it’s a close knit family that you develop, within those groups and just talking and listening to other parents. [00:10:50] And, you know, there’s no question too big for my friends and family on these groups. And, you just can’t, you know, there’s nothing out there that you can’t talk about. And you have to talk about it because, you know, you’re trying to raise a daughter or son that has special needs, and somebody’s got to be the voice for them. [00:11:12] And that’s, what’s helped me so much is just the community surrounding me, that’s just blessed me and my family so far, so. [00:11:21] Stella: That’s greatly, Leroy. Thank you so much. I’m hearing a little feedback from you again. So if you don’t mind maybe checking your connection to your earplugs, earbuds, that may help with that. [00:11:34]Katie, how about you? What, I mean, I probably could answer this for you too, my dear, but what has helped? What have you found that has helped you handle difficult situations? [00:11:44] Katie: So I think for me, it’s been really important that I knew who I could talk to. That I had friends that I could trust that I could bounce ideas off. That I really could say, just ground me. [00:11:55] Am I, am I really overthinking? This is it, is it really as bad as I’m looking at it? And so I think sometimes the places that I have thought were the worst places in my life, it has been other parents who have kind of helped pull me through that. And helped me realize that you’re going to get through this. [00:12:13] This is, this is okay. You’re going to get through it, because it’s so difficult when you’re told no a lot. You know, it’s a challenge and it’s just hard. It’s a word that I think when we’re asking for things, especially for our kids and it’s like, maybe people don’t have that open mind. What do you do with that. It hurts. So having good friends that kind of help you bounce back up and remind you that you keep advocating. Keep advocating, don’t give up we’re in this together and we have to stick together and support each other. [00:12:44] Stella: I love that. That’s great, Katie. Thank you so much. Anyone else have anything else they want to add to this question? That has really helped them during those difficult situations. I know we talk with families a lot that are really struggling, you know, and just needing that. [00:12:59] I loved your all’s answers to that, I think that it’s so important that we build collaborative relationships throughout our journey. [00:13:07] Katie: Stella I’d like to add one thing. [00:13:09] Stella: Sure. [00:13:09] Katie: I think it’s really, really important to not go to places where you hear the angry voices. Because sometimes when you’re doing advocacy and it can be a difficult situation and there’s people that will, that really don’t agree and are angry and they’re upset. And sometimes their feelings too can be projected on you and it makes your situation worse. [00:13:31] So remember whose voice you’re listening to. And pick people that you really trust and who are going to be honest with you, because I think that’s really important, but making sure that you are trying to be as positive as you can, without falling into those pitfalls where you will be angry. And you cannot get anywhere being angry. There’s no solution there. [00:13:54] And that’s easy because you can, you can find a lot of people who will be mad with you. So I just wanna throw that out there. [00:14:03] Stella: That’s great. Anybody else have anything else to share on this? As I said, guys, I want this to be a real good conversation that we, you know, have with each other. [00:14:13] And, you know, some of the questions, you know, you may have an answer and then you may not. And that’s totally okay. It’s this is just something that I know these are questions that we know families have or have concerns about. And we just want to be sure that, you know, they are, people are hearing those answers, to the best of our ability, at least. [00:14:35] Well, if no one else does, we’ll move on to the next question. [00:14:45] Make sure it’s popped up so you all can see. Okay. There we go. [00:14:48] If you don’t agree with someone during a difficult time, how do you respond and what has helped you deal with these situations? And Katie, I’ll start with you on this one. [00:14:57] Katie: Okay. So for me, I get a lot of practice at this because I work in public policy now. And so now I’m, I’m talking to legislators about bills and they often don’t agree with me. But one thing that I can say about this is stay true to your, to who you are. Stay true to what you believe. I don’t change my ideas. And so I’m very consistent with that. And I still believe that everybody should have opportunity. [00:15:24] And they know that I’m consistent. So it may look like they don’t appreciate your answer sometimes. But that’s okay. Cause you, at least, if they’re being honest with you about how they feel, it kind of gives you some insight. Because if I know that you don’t agree with me on something and I need you to make changes to impact that, then I can go back and talk to my friends, talk to my resources, start thinking about how I can show you how important this is to me. [00:15:52] And then the being consistent, it goes a long way. If people know that you’re in this for people, then it makes the big difference. You know, you’re here and you’re not going to change. And, I work a lot with people and help them with their testimonies or a statement that they might want to put out there about an issue that’s important to them, and try not to get too political. [00:16:12] But one of the things that I always say is stay true and I’ve had people say, should I shake up my next response at the next meeting? I’m like, no, they need to hear the same thing from you every time. If it’s important to you be consistent. They don’t have to agree with you. Eventually they’re going to say, I’ve heard a thousand times, I’ve heard Katie Bentley say that. So I’m going to call her and talk to her about it because she’s my resource because she’s given me that information. [00:16:37] So there’s going to be people who aren’t going to agree with you because they haven’t been walking in your shoes. So just remember that, but there’s people out there that can relate to you and want to help you. [00:16:47] So you, you’re not alone. [00:16:51] Stella: That’s great, Katie. I love that. And you know, you taught me a long time ago about sharing your story and how important that is, and keeping consistent with that. [00:17:01] Katie: It’s my favorite, storytelling. [00:17:04] Stella: We like those stories. Don’t we though? [00:17:05] Katie: It’s powerful. [00:17:06] Stella: That’s right. [00:17:07] Katie: And Leroy, how [00:17:08] Stella: about you? Have yo, had to deal with some difficult times and how did you deal with those situations? [00:17:18] Leroy: Yeah, I’ve learned that, you know, listen to other people’s experiences and beliefs and just apply it to my own situation. And it’s just like Katie said, I want those people, those professionals, you know, to be honest with me. Don’t just say something to pacify me, like sitting in an IEP meeting or something like that. [00:17:39] It’s not like I’m out here buying a car. You know, don’t rush me into something that I don’t agree with. And sometimes, you know, you have to take that stand and say, listen, this is for my daughter. It’s not about me. And that’s the biggest thing that I’ve, you know, come to realize that you just have to be that voice and except everybody’s thoughts and their beliefs, but also don’t back down just like Katie said on your own. [00:18:14] Stella: That’s right. That’s that’s great advice. Great advice, Andria, what do you think about this question? [00:18:22] Andria: So Katie and Leroy both have great answers to this. I found that it’s so easy to become frustrated with systems and processes. And, for me, in difficult situations I’ve learned to kind of take a brain break. If it’s, you know, in person interaction or if it’s email interaction, sometimes I just need to step away. [00:18:44] To give myself a clear thought process so that my response, in a difficult situation, is effective. Like Katie mentioned, you know, being angry, doesn’t get very far. So I just always want to make sure that while keeping my son at the forefront, that my response comes through very clear and effective. And doesn’t, you know, transpire any feelings beyond what is necessary to correct whatever the difficult situation may be. [00:19:12] Stella: That’s great. I know one of the books that I read years ago is called, From Emotions to Advocacy. And I think that, that is the key because we are all parents here and we have an extra addition to just being a parent is we have, you know, children who have, extraordinary needs too. [00:19:32] And so sometimes our emotions can easily take over. And so I would always do self-talk. I have to, I mean, if anyone would see me, they would think that I’d lost my mind because I talk, I have to talk to myself through those difficult times because I can tend to be a hothead. And so that is really helped me, you know, like you said, keep that focus. So I love everything you all said. That’s wonderful. And I think families need to hear that because immediately we, you know, we get on the defensive. [00:20:10] You can mess with me all you want. [inaudible] [00:20:18] So let’s move on to the next question. What is your biggest regret regarding advocacy? And how would you handle things differently now? Let’s start with Leroy on this one. [00:20:40] Can you hear me Leory? [00:20:43] Leroy: Can you all hear me? [00:20:46] Stella: Yeah. Sorry. My phone rang of course, never rings normally any other time, hardly, but it’s going to ring right in the middle of this. [00:20:53] Leroy: I don’t have hardly any regrets about my habits, you see for Kendall. And, we’ve taken what’s dealt to us and we keep running with it. [00:21:04] You can’t slow down. I think that, what Kendall has shown me is what she can do for herself. Sometimes I catch myself being a hovering parent. But as she grows older, I want her to have that individualism, that, you know, she can do this by herself. In other words, I think Kendall, Kendall has shown me my own disabilities. [00:21:34] You understand what I’m saying? It’s that, it’s a reflection. So I’m looking at her constantly, I’m trying to do this for her and do that. And the reciprocation she’s done the same thing for me. And she’s made me a better parent. There’s nothing I wouldn’t change about Kendall whatsoever. [00:21:56] Stella: Absolutely not. I love that. That’s great. Andria, how about you? Do you have an answer for this one? Or a statement? [00:22:05] Andria: I do. I wish that I had known early on, how much parent involvement and true parent advocacy it takes to gain changes for our children, the changes that they need at the school level. [00:22:21]I believe when my son was first diagnosed that we weren’t really given the next steps of what to do next. It was just kinda like he has a diagnosis of ADHD and, you know, send you out the door you’re on your way. And it takes so much more than that. And I wish that I had, you know, I don’t want to say that we shouldn’t depend on our schools we absolutely should. But in that partnership that I spoke of, it takes a little bit of the school and a lot of it of the parents to make this work. And, if I had started a little more research early on and, read up on IDEA, section 504, ADA his earlier years may have been a little more successful. [00:23:04]But I, you know, became a little more skilled after attending a Kentucky SPIN breakout session. And, you know, even had some documentation and packets to really support my learning. So if I had that, when he was first diagnosed in third grade, he may have had a better situation in his elementary years. [00:23:23] But I’m very grateful that I have learned what, you know, have the knowledge that I’ve gained as he was in middle and now in high school, because he has made progress. He’s a 4.0 student and he’s grown so much as a, as a student and an individual with this diagnosis. But I wish I would have done a little more research in the beginning and just stuck my toe out there to, you know, grab everything on the front end instead of just hoping things would fall into place. [00:23:55] Stella: That’s exactly, perfect. Perfect example of, that’s why we do what we do now. We’re empowering families now, too, so they don’t have to go through those times of not knowing. And I think that’s real important. And I know when my son was first diagnosed, And, you know, I was reaching out for information from people and it was almost like they were, you know, how, when you’ve got something you don’t want anybody to know about, you know, it’s like, I don’t want to tell you because you might take it. That’s kind of what I felt. [00:24:27] And so I made it my goal and I know Katie has to, hey, whatever I have is yours. Whatever I know is yours, I want to share that out. And so I think that’s really good. And, you know, I wish that, you know, it, it would have been a little more easier to find that information. [00:24:45] So now I think we all can agree that we want to provide that information to families as best as we can now, so. Katie, do you want to add anything to that? [00:24:54] Katie: So I’m not really sure that I have any regrets because I really feel like I did my best. I did the best I could in the times. My son was extremely sick. [00:25:04]One year he had 21 providers taking care of him. So I feel like for us juggling 19 appointments in one week was huge. But I think back and I think about what I wish I had someone had given me. And I wish someone had told me about some of the really important groups, like Kentucky SPIN. Would have been really important for me to have found out in the very beginning. Like what the council is that I work for, what it does, how it promotes systems change for people with disabilities and their families. [00:25:37] So there’s organizations that are mandated under federal law and then all these great resources here in our state. And nobody tells you about those. You find out about them, if you can make time to go to a conference. You find out about them by someone who’s willing to share resources, which we know how that goes. [00:25:55] That takes a, it’s difficult sometimes. And you’re right. And my resources are your resources. Anyone can contact me if they’re looking for something. But I think now that I’ve worked with other families, I really, I beat myself up over a lot of things. But now that I’ve worked with other families, I realized that we can only do one day at a time. And don’t be so hard on yourself whenever it’s not perfect or you didn’t get what you were hoping to accomplish. You didn’t get it yet. It doesn’t mean it won’t happen. It doesn’t mean you didn’t try. [00:26:25] So I think sometimes we’re hard on ourselves. You know, we look back and I can tell you, I had a list of regrets. I felt terrible about some of the things that happened with my son. And, but looking back now, I know that I was just doing everything I could to keep him well and alive and, you know, and it was just my best. But I wish that I had had that I did have those early resources that I know would have helped drive some of the work, maybe a little quicker and made me feel a little bit more confident so that when I was getting that knowledge. [00:26:58] I think that’s really important because you’re, you’re thrown into disability and you don’t necessarily know all the language or all the resources or how Medicaid works or how schools work. And you don’t even, and there’s people who want to change those things, but if you don’t know how they came into play, like why is that a federal? Is that from the federal and the state has to do it? So there’s a lot to learn. And I wish I had known that it would have probably changed some of my routes of advocacy, but I feel like I just did my best and it was a beautiful mess, but we, we made it through it and he’s 16. So I’m doing great now. So. [00:27:35] Stella: And every time I hear you say you’re 16, that just makes me feel extremely old. So, you know, we’ll just move right past that one. So I do have someone, I have someone that’s asked a specific question that I think kind of flows right into this. [00:27:49] So, and it’s for Andria and it says, how did you figure out what your child needed at school to be successful? And where did you find those resources and ways to advocate for him? Could you talk a little bit about that process? [00:28:04] Andria: Sure. So, my son was, and I may have already said this, so forgive me for being redundant, but he has ADHD. That was his official diagnosis at first. And, it has changed as he has grown. It’s now attention deficit disorder and inattentive, primarily inattentive. He doesn’t have any hyperactivity. So, while that label, you know, kind of sounds the same for all children with ADHD, the diagnosis and symptoms can look very different in all kids. So just learning him very well and how he behaved in school, which again goes back to that partnership of just a lot of communication. [00:28:44]I have some really great relationships with teachers at school who notice when he has an off day and. My door is always open, so to speak email, phone calls. I want to know how he’s doing even at almost 16 years old, because that gauges how his 504 plan needs to look that gauges, what conversations we need to have when he comes home at the end of the day. And what tomorrow might look like. [00:29:09] Stella, will you repeat the second part of that question for me? [00:29:13] Stella: Sure. She just said, where did you find those resources and ways to advocate for him? [00:29:19] Andria: Okay. Awesome. So I’m going to have to plug Kentucky SPIN again. I did do a lot of reading in the beginning and just internet searches and having conversations with other parents, with kids with ADHD. [00:29:29] But the breakout session that I attended from Kentucky SPIN, Kellie had this beautifully prepared folder that I know that you all can make available. But it just had all of these pamphlets and resources inside that mapped out how to walk through, a 504 meeting, how to effectively advocate for your child. What you can ask for, there are many asks that I didn’t know that as a parent, I had the right to ask for. So, just really seeking out the resources and doing a lot of research on what is available. And then knowing the laws, I really, really studied the laws just to make sure that everything that was available for my son was being offered to him. [00:30:14] Stella: That’s great. That’s wonderful. And I know that answered that question. I think that’s great. Hey, you can plug Kentucky SPIN all you want, you know. But that, that’s exactly with me too. It was, you know, I think I still think Kentucky SPIN is the best kept secret in the state because we do provide so many wonderful resources for families. [00:30:32] We’ve just got to get it out to them. So, okay. Our next question. If you were talking to a new parent whose child was just diagnosed with a disability, what would you tell them? And let’s start with Leroy on this. [00:30:56] Leroy: Wow. That is a big question right there. I would tell them, get a group. You have to have a group of friends, group of parents, school teachers, to help you through this journey. When Kendall was first diagnosed with her disability of course the first thing you’re going to do is run to Google. And burn it up and there’s all this scary stuff out there about everything. [00:31:24] And that was, that was a big mistake right there. You know, we just found out that we were going to have, you know, a little girl and you’d throw in the next 10 minutes where we’ve got a heart problem. So we’re rushed to UK. And, you know, they’re going over with us what’s wrong with her heart and all of this. [00:31:45] And, I don’t know if Stella, if you went through kind of situation or not, but it could change your life. [00:31:53] When Kendall was born, one of the doctors, in the cardiology department came to us and told us that he felt something was wrong. Other than just, you know, heart problems. And he says, I think she has Williams syndrome, but we don’t know yet. We have to run a test and she can’t have that test for about six months because she’s got donor blood in her. [00:32:18] So we had to wait six months to have that test. And when it came back positive that she did have Williams syndrome, it’s like I said, you’ve got to have those people. You’ve got to have that, your immediate family for one and your church members, your neighbors, whoever that you know will listen to you. [00:32:37] And that’s the big thing, right there is having somebody to listen to you. You know, to be that sound box that, you know, to help you through the days ahead. That’s for sure. But, you can’t do it alone. Not at all. I’ve tried. That’s, that’s hard. It’s one of the worst things you could ever try to do is do it alone. [00:33:00] So I thank the good Lord for my wife. When we met, she knew all about Williams syndrome. Because she had a 54 year old cousin and he’s still living. He lives in Ohio. Rick has Williams syndrome also. So Diana’s very familiar with Williams syndrome and her whole family and that was just the bond between us. [00:33:21] And, she’s been such a wonderful stepmother mother to Kendall. So, that’s my journey. [00:33:27] Stella: Yes she has, I think that’s pretty awesome. How all that connection came about. I think that was meant to be. [00:33:34] Leroy: Yes it is. [00:33:34] Stella: Katie. How about you? What, what do you think? What would you tell that new parent just getting that diagnosis. [00:33:42] Katie: So there’s lots of great organizations that are supporting new parents. And so I think that you definitely should reach out. And in most of the hospitals or doctor’s office, pediatricians, they like to loop you into some family support. [00:33:59] Cause you, you do need someone else who’s out there. Who’s been there who knows about the resources. I do think that it needs to be credible. Because I think there’s just, anybody can start a support group. So I think you do have to be careful because they, they may not have all the correct information. [00:34:17] And so I think that that’s really important to talk with your doctors who are helping you. Because they know who’s, where you can find those resources. Most, every one of them do. But I think that’s where your network start. It starts that whenever you have a child with disability, all the people that fall into place that help you figure things out, they start becoming part of your network. [00:34:39] And that network, I think, is just, it’s like our safety net, you know, it’s kind of what helps get us through it until we can figure out what we need. And it’s just, cause you’re not just thinking about your child’s needs, but you’re also thinking about your family’s needs too. Because there’s lots of adjusting and you want to make sure that everyone’s treating your child appropriately. [00:34:59] They’re part of the family and they should be treated like part of the family. And then you also want to remember that. But for me as the mom, I had to have therapy into play so much that I needed to also remember to take some time where I didn’t think about the disability. And all I thought about was my child. [00:35:17] You know, just, and I tried to do that, I’ve tried to make sure that I took a break from worrying about meeting those First Steps goals, or later meeting those therapy goals., because it’s, it’s hard, it’s hard to get wrapped up in it because you’re trying to make a difference, but you’re making a difference just spending time. [00:35:34] My, the first time that I really realized that after Will was diagnosed, we knew something was going on. He didn’t have his full diagnosis, but, I was, we had been teaching him sign language because he couldn’t talk. He had seizures in the part of his brain that controlled his speech. And, that was the first time that Will was laying in the floor signing I love you to me. And so that was our family time. [00:35:55] We weren’t doing therapy and it was so exciting. Just to have him initiate that conversation with me. But, I think it’s hard sometimes because we’re so busy juggling all those parts and pieces because when you not only a parent, you’re a nurse, you’re a doctor. You’re, you know, you’re an organizer you’re trying to keep track of appointments. It is overwhelming. [00:36:14] Keep good friends close and remember to give yourself a break. Cause it’s hard. [00:36:20] Stella: I love that. That’s awesome, Katie. That’s just great. Andria, do you have anything to add to this? [00:36:27] Andria: Sure. I think that upon initial diagnosis, sometimes there’s a stigma, a heavy feeling that comes with it. [00:36:36]I remember a lot of self-blame and just feeling like, what did I do wrong or where did I go wrong? But we have to get over that quickly, right? Because our kids need us and studying, doing lots of research. I remember just looking up different ways to make sure that all I’s were dotted and T’s were crossed because I wanted to make sure that he was going to get the full benefit. [00:37:00]And we spent a lot of time not medicating, you know, back to that stigma. I, wanted to try to do all that I could for my child naturally, without medicating, until I figured out that, you know, I was working harder than he was, to modify that lifestyle. So just doing research and looking into different alternatives. You know, if, if some people are very scared of medication, I did a lot of research and relied on our behavioral health specialists to make sure that he had the right medication, right dose for his disability, age, weight, and so forth. [00:37:38] And his first medication was the right medication for several years. We didn’t even have to adjust the dosing. So, you know, when this is brand new and it feels very scary. You know, relying on other people has been brought up. That’s that’s great. I love to talk and get opinions, but again, each of our children have very unique needs. [00:37:57] I don’t think that any two are alike. I can remember hearing a school personnel say, Oh, I’ve worked with a student with ADHD before. But that student may not look or have the same behavioral symptoms is my student. So just to let you know, a lot of research, lots of knowledge in your back pocket. [00:38:15] Stella: I love that. Very good. Very good. [00:38:18] Okay. Let’s move on to the next question. It says, what do you wish you would’ve known when you first started your advocacy journey that you know now? So Katie take us on this journey right here. [00:38:33] Katie: So I think for me, people tried to convince me that maybe they knew what was best for my son. [00:38:41] And I’m not saying that I’m not open to ideas and I’m not open to suggestions, but I think I’m pretty much, you know, the expert on Will. I could, I could spout out facts about Will’s medical that doctors just thought was amazing. Cause I could tell you dates of the last 30 seizure days or whatever, but I knew a lot about him and I think some people empowered me to feel like I was really a part of his team. Even on the medical side and the school side. And then, you know, even other parents, like Andria said, other parents, sometimes they want to tell you how to fix your kid. Well, I wish that I had said something to the first person who told me they were going to help me fix Will. [00:39:27] Because he was never broken. And so, he often has asked me did I love his seizures? And I love everything about Will. I didn’t like what the seizures did to him, but I loved everything about him. And I know that having him, him having seizures was just the part of him. [00:39:46] But I knew a lot about him. I knew how to take care of him. I knew what made him happy. I knew what made him afraid. And I wish that I had really looked at myself as more of an authority, more of a person who really understood my child’s needs instead of letting someone else manipulate me to think and lose my confidence. I think I lost some confidence and didn’t feel as empowered. [00:40:09] Now I’m not like that. I can just tell you how it is, but in those early years I questioned because his diagnosis was new to me. I was learning. We were constantly adding new diagnosis. And Will was very, very sick. So I relied heavily on medical professionals. But when it came down to advocating for him in school, one of the things that I had to advocate for, for Will was having a seizure plan in place. [00:40:32] I needed to know that they knew what to do when he had a seizure. And then advocating and making sure that that’s covered on the school bus. Nobody tells you, you need to do that. So, and that wasn’t, that wasn’t something that I needed that I knew I needed to do. And the school nurse and I were talking about it. [00:40:49] So there’s lots of parts of advocacy. So when, even when you’re thinking about medical medical sometimes carries over to the school platform. And you need a plan in school, it could be all kinds of different diagnosis, but for Will he had to take seizure medicine to school with him. So it was really important that I knew that the people who were going to give him medication knew what to do, and that we had a plan. And we had a great plan because the emergency team that came to our house to take care of him, we’re just around the corner from the school. So it was amazing. They knew Will, so it ended up working out great. But at first I think I didn’t feel as confident because I wasn’t a medical professional. [00:41:25] And I was just a mom, but really I have learned a lot even at that point. So, I think it’s just keep that confidence. You know, your child, you know them, and if you don’t know, work with the people that you trust and your medical professionals and your school team. [00:41:41] Stella: That’s good. That’s great information, Leroy or Andria, do you all want to add anything to this? [00:41:51] Leroy: I think when we first started out that, you know, Kendall, she went through a lot of developmental delays. You know, she didn’t walk until she was almost two years old. And one of the biggest things that we finally heard about was, you know, the help that’s out there. The biggest thing that we saw then was the First Steps program. [00:42:14] And I think the First Steps program helped Kendall so much in those first, I think three and a half years, somewhere in that area. But the ladies and men that would come to the house and help us with Kendall and help her reach these goals. You know, you may think three hours a week, for 45 minutes, three times a week won’t don’t do much good, but it does. And it was outstanding. [00:42:40] I still have that printed sheet with all those therapists today and to help with Kendall resource goes, and that’s a continuing thing. She still goes through therapies and, you know, all those people out there that just to help her every day and to grow in those areas. To get passed over developmental delays. That’s been a blessing to us. [00:43:01] And, you know, just learning about this Kentucky SPIN program, what might be out there to help me with Kendall, you know, that’s another, a thing that I’m looking forward to. And, you’re going get a lot of questions from me. I’d like to have one of those brochures or folders that you all were talking about a while ago. [00:43:23] Stella: [chuckles] We can take care of you Leroy, that’s for sure. [00:43:29] Leroy: [inaudible] [00:43:30] We’ll take care of you. Andria, do you have anything to add to this? [00:43:34] Andria: Sure. I will echo Katie. We know our children best, right before they ever even make it into the school system, we know these babies from the day that they’re born. And, I always say, I’m not an ADHD expert, but I’m an ADHD manager. Right. [00:43:49] I manage it every single day alongside of my son. So when your child, you know, makes it into school and you’re having these meetings and stuff, and you’re doing this active advocacy, ask questions. I wish I would have, you know, asked or made suggestions or just really opened up my heart to what our needs were, instead of just hearing the, what we call, you know, alphabet soup from educators and stuff. And, you know, just trying to absorb all of that information. [00:44:21] There are no bad or wrong questions to ask for your child. And even making suggestions, you know, we can have these asks for the school and sometimes they may be shot down, but sometimes there’s an ask that can be accommodated that just hasn’t been brought to the table. So you have to use your voice. [00:44:40] Stella: I love that. That’s exactly. That’s great. Wonderful, wonderful information guys. Well, we’re at the point in our presentation where we have three questions, we want to pose each of you. And we’re going to have to do these as speed questions because we have had such wonderful conversation that we’ve used almost all of our time already. [00:45:00] So, and we wanna, we want to stay true to our time, so that we have everyone off in an hour. So the next three questions I’m going to read them. And then if you all would just give us, you know, as quick of an answer as you can on these. We would really appreciate it because this information is so vital. [00:45:18] So, Andria, your question is. First and it’s in what ways do you include your children to ensure they find their voice and work towards independence and self advocacy? [00:45:30] Andria: Okay. So my speed answer is this, although he was diagnosed in the third grade, when it was age appropriate, I made sure that he was a part of his annual 504 meeting every year. [00:45:41] I want him to listen and really hear how these conversations go so that when he goes to college, in just two years, he will have these self-advocacy skills and know how to locate the disability office on campus to have these same conversations. So when I invite him to a 504 meeting, I am literally modeling for him what they look like, and then he is also included to give his input and have his own asks at those meetings. [00:46:09] So it’s just important to me, that he be able to do this when he is an adult. [00:46:15] Stella: So Andria doing everything for him is not the best way, is it? [00:46:21] Andria: It’s not. And I had to learn that the hard way, because we really want to, I mean, that’s just the natural mama bear, papa bear. [00:46:27] I think that we want to smooth them over, but not… [00:46:33] Stella: Always the best answer, that is so true. That’s true. Okay. I love that. All right, Katie, are you ready for your speed answer? [00:46:43] Katie: Yes, I am. All right. [00:46:46] Stella: What are the most critical changes that we must make to face the future effectively? [00:46:54] Katie: We really need to be supporting each other. We need to strongly support each other and share resources and work together. Just because I don’t know your issues don’t mean they don’t matter to me. So I think we just need to stick together, stick together in every aspect. [00:47:11] Stella: I love that. Oh, you were fast girl. [00:47:15] Katie: Yeah! [00:47:16] Stella: [chuckles] [00:47:17] Okay. Leroy, this is your question. And I will be happy to say that this is probably my question too, and my concern right now at where my son is in life. But regarding transition to adulthood and living independently, what are some do’s and don’ts to avoid being that hovering parent? [00:47:43] Leroy: Yeah, that was the big question for me is, you know, Kendall she is just now leaving elementary school. She is going into middle school and now I’ve got more work worries piled on top of them. I want Kendall to have that independence, but at the same time, I want to make sure that she’s protected. [00:48:02] And I understand your situation with Clayton. You know, he’s got his girlfriend in Florida and, you know, there’s a bright future there. There’s such a beautiful couple. And I know that you’ve got all these hopes and joys for them. And I know that you’ll still be that hovering parent, but you’ll have to be on the back lines. [00:48:24] You see what I’m saying? [00:48:25] Stella: Absolutely. [00:48:26] Leroy: And that’s where I want to be. I want to stand back and I want to watch Kendall do her own thing. But at the same time, I don’t want to lose that protection area for Kendall. So. [00:48:38] That’s [00:48:39] Stella: perfect. That’s exactly right. And, I will tell you this, even though he’s 24 now, it’s hard still. I still want to still want to hover every now and then, you know, and he puts me in my place very quickly. But the one thing I’ll add to that before we move on is, we all are where we are today because of our mistakes that we’ve made in our life. Right. We all did. We all are not perfect. We did not get to where we are by doing everything right. [00:49:04] So we have to allow our child, children with disabilities and without to make those mistakes, and quit and not fix everything for them. So that they’re able to learn and grow just as we did. And I think that has been the hardest thing for me is to not, I’m a fixer, so to not fix everything and make it look beautiful and perfect is accept the beautiful disaster along the way, because that’s where we’ve all been ourselves. [00:49:37] So that’s, what’s helped me. And it’s not always easy, though. I will tell you that. [00:49:45] So, I love this, this, this little picture right here on this next screen. As soon as you all get it is beautiful because I want you all just to take a few minutes and tell us what your why is? I think. We’ve heard it through the whole panel today, but I want you all to get personal for just a minute. [00:50:08] And again, this will be our speed personalization answer. Tell us your why, and why you choose to advocate. And Andria, we’ll start with you and I’m telling you, your children they’re, they’re like beautiful. I mean, I think I even commented that on your Facebook posts, when I saw this, I’m like, your whole family is just beautiful. [00:50:31] Andria: Thank you, Stella. My why is absolutely the two pictured, Anthony and Aubrey. And I’ve, you know, learned advocacy through the education trust in Washington, D.C, national parent training and here locally through the Commonwealth Institute for parent leadership. So, you know, I have my advocacy lessons and learning polished. But when you start to advocate and it really becomes a thing, you don’t only advocate for your kids, but you advocate for other kids. [00:51:03]When you get really good at this and it feels natural to you, you start to, you know, we talked about having other parents to lean on, other parents are going to lean on us as well. So my why is not only those two boys, but for every kid that I may ever come in contact with, or any parent that needs help. [00:51:21] It’s not just a, you know, exclusive to my family. It’s any kids that we ever come across because they don’t have a voice for themselves yet. So we have to advocate on their behalf. [00:51:36] Stella: I love that. Thank you so much. Katie, how about you? What is your why? Even though that sweet face right there, I know what it is, Mr. Will. He’s my favorite. [00:51:45] Katie: So Will is definitely my why. He, I just wanted his life to be different. And when he was diagnosed, we were told he wouldn’t ride. He wouldn’t walk all these things that he wouldn’t be able to do. [00:51:58] And he has really defined the odds. I mean, he is amazing. But Will, is my original why, but as I watched him grow up, I realized that I wasn’t going to be around forever and I want the world to change. I want the world to be a better place. So whenever Will needs something, I don’t want him to need a guardian. [00:52:18] I want him to have friends and people in our communities that will support him in things that he needs or questions that he has. So he can keep moving forward. I want him to have his own life. And I know that that doesn’t start because I’m just advocating for Will’s life. It starts because we’re advocating for big change. [00:52:36] And that’s what I want, Will as the center of that. I’m a little selfish. I want it for him, but I want it for all of us. [00:52:45] Stella: That’s awesome, Katie and we are so glad that we have you out there doing that for us too, because I know when I have any questions about policy or anything, Katie is your go to girl for that. That’s for sure. [00:52:58] Katie: You can count me in. [00:52:59] Stella: Leroy, how about you? That’s right. How about you? When I look at this picture of Kendall, of course, I see my Clayton too. [00:53:05] So tell us a little bit about your, why. [00:53:13] Leroy: Kendall is my life. And, she was my only life. I’ve raised two young men. And when they were 16, 18 years old, bam, we had Kendall. My boys, I come from a military family. I served in the military. I was in the Navy. My sons, Justin was in the army. Jamie was in the Marines. And, you know, they were trained warriors and they fought for our freedom overseas. [00:53:40] Kendall is my little warrior also. I’ll call any little heart patient a warrior, because that’s what they are. They’re fighting for the life. And they’ll continue to fight for their life, you never know what’s going on with her health. And, she is my little warrior in a princess way, you know, as you see there in the picture, she’s dressed as Bell the princess. [00:54:06] And, that’s one of my favorite pictures of her. Raising boys, raising girls it’s a total different thing and it’s a new journey for me. And I appreciate all the input that I can get. So she is my why for what I do for her. [00:54:22] Stella: That’s awesome. That’s awesome. Thank you so much. I just love this picture of all of your all’s children up on the screen, because that is exactly why we do what we do. [00:54:35] We’ve got one more poll question. We are almost out of time, but on this question, I’m going to open up the poll here and let’s see if I can do this. [00:54:45]I’m going to launch it right now. And it just simply says, I still want more information about advocacy. And if you will put that in there, that would be great. Just give us your response. And then what we do is we will follow up with you and get some more information out to you about that. [00:55:07] And there were a few more questions, that came through and I’ve tried to answer a couple of them, but there were some that were very specific to each of you all, and I’m going to send those to you all. And let you know, we’ve got, you know, the majority of people saying, yes, they want to know more about advocacy. [00:55:24]So I think that is, an answer right there, that how important that advocacy is to our families. 91% people said, yes, they still want more information. So we know that that is going to be so important that we get that information back out to families so that they’re able to find the resources that they need to advocate for their child and others. [00:55:51] So guys, you all have been wonderful. And I just thank you so much. I think this was wonderful. I think we need to do it again. I do. I think we need to bring you all back again and do it again because I think we could talk for hours. I know I could. [00:56:09] And so, just, just real quick, any final thoughts, any of you all want to say that maybe it’s just burning inside of you that you want to get out before we let everyone go. [00:56:22] Andria: Well, thank you to Kentucky SPIN. Cause I cannot say enough how, I feel like I advanced in my knowledge as a parent from participating with you all. So thank you. [00:56:32] Stella: Well, thank you. We really appreciate all of your work there that you’re doing too at Prichard Committee. And we’re so glad that you’re representing families with disabilities. [00:56:41] I think, I think that’s a key thing, that we all want to have that representation. So anybody else? [00:56:48] But I just, I’m so grateful for you all for being here and just a couple of little housekeeping things. And when everyone exits today, you will get a survey. If you could please fill that out for us. [00:57:01]And I will follow up with an email. And, I will, be sure and get some resources out to everyone. And I will send you guys those questions that you can follow up with those family members on too, if they’re, since they’re individualized to each of you. And, thank you all so much. Thank you so much for doing this for Kentucky SPIN today. [00:57:22] And I hope this has helped some families that have been online. I will let you know, we will have this available on our YouTube channel. And you can go to Kentuckyspin.com and find our YouTube channel. And it’ll be a couple of days before we get it uploaded, but it will be available. And we’ll share that out on our Facebook page also, for you all to share with families too. [00:57:43] Cause I think this is great information. [00:57:49] Thank you all again. [00:57:50] Leroy: I think so too. [00:57:50] Stella: And everyone have a wonderful day. Bye.