October 13, 2020 | Special Guest Speaker: Amanda Bruce, Low Incidence Consultant, OVEC & Stella Beard

Stella: Thank you so much for joining Kentucky SPIN today for our Tuesday Tips webinar, we are excited today to have Amanda Bruce with us from the Ohio Valley Educational Cooperative. And she is going to be talking a little bit about social strategies and friendship building. So we are super excited about the presentation today, but before we get started, just a couple of little housekeeping things.


Stella: Thank you so much for joining Kentucky SPIN today for our Tuesday Tips webinar, we are excited today to have Amanda Bruce with us from the Ohio Valley Educational Cooperative. And she is going to be talking a little bit about social strategies and friendship building. So we are super excited about the presentation today, but before we get started, just a couple of little housekeeping things.

[00:00:25] On your right hand side, you will see your dashboard. In that dashboard you will also see a dropdown box, that says questions. If you have any questions throughout the presentation today, please type those in the question box and we’ll be monitoring those throughout the presentation. And Amanda will be more than happy to answer any questions that she can. If by chance we don’t get to your question, we will be sure and follow up with you after the webinar.

[00:00:53] You will also see a box that says handouts, please know that there are handouts that are provided for today’s webinar. But we will also be sending out an email following the webinar today with all of the handouts, that includes the PowerPoint and all of the handouts that Amanda has provided for us. So if you don’t want to take the time to download them now, that is totally fine. We will be sending that email out later this afternoon with all of that information for you.

[00:01:25] But I want to tell you a little bit about Kentucky SPIN. my name is Stella Beard, I am the Assistant Director for Kentucky SPIN. We also have Michaela Evans on the phone with us today or on the call. She will be helping with questions throughout the presentation also.

[00:01:41] But Kentucky SPIN is the Special Parent Involvement Network, and we are the parent training and information center for the State of Kentucky. And we have been the parent training information center since 1988, and I’m happy to say we just received notification and funding for the next five years. So we are very excited that we get to continue with our work that we are doing in Kentucky.

[00:02:06] What we do is we provide training, information and support for children and youth with all types of disabilities birth through age 26. We work with families, parents and professionals and also young adults who have an intellectual developmental disability. So I’m very, also very proud of my work and honored to be a part of the staff at Kentucky SPIN.

[00:02:31] We do not act as attorneys. However, we empower families to effectively advocate for their children. And we provide that peer support to help families access needed information and resources. All of our staff here at Kentucky SPIN are either a parent of a child with an intellectual disability or an adult who has a developmental or an intellectual disability. Or our staff could have a disability themselves or be a sibling. So we like that peer support that we are able to provide to families.

[00:03:02] I myself have a 24 year old with an intellectual disability. So we have been through the school process. And now he is an adult living, of course, here with us right now, but we are in the process of working on transition for him to live in his own place. And, so that’s really wonderful. Clayton has a job and he does really great. And so I’m happy that I’m able to work with families and help them through that process of their child being, growing up and then also exiting high school.

[00:03:34] But we love this quote here and we say it a lot here at SPIN. But together we can accomplish great things for our children. None of us have all the answers, but we are all working through this pandemic and adjusting as we go.

[00:03:46] And one of the things that I’ve noticed so strongly, and it seems it’s been more now during the pandemic, is loneliness and isolation with our young adults and children with intellectual and developmental disabilities. So we’re very excited about the presentation today, because I know that this is going to be wonderful for everyone who is experiencing that right now, with their young adult. And I think this is going to be great.

[00:04:21] So I am so happy to have Amanda Bruce with us who is a Low Incident Consultant with the Ohio Valley Educational Cooperative. So, Amanda, can you hear me?

[00:04:33] Amanda: Yes, ma’am.

[00:04:35] Stella: Awesome. Well, can you just tell us a little bit about yourself and then we will get started with your presentation. Thank you so much for being with us.

[00:04:43] Amanda: Thank you, I really appreciate the opportunity to speak with Kentucky SPIN today. Kentucky SPIN is near and dear to my heart. I am the sibling of an adult with autism. He also has Tourette’s and some mental health issues. He lives with me, he is going to be 41 in December. And we have a lot of fun.

[00:05:05] I was a moderate to severe disabilities teacher here in Kentucky for a little over 10 years before I transitioned to my position at the cooperative where I work with teachers who work with our students with intellectual disabilities and developmental delays, to really keep them on the cutting edge of not only instruction, but the supports that families need.

[00:05:29] I also am in the unique position of having a husband with Asperger’s syndrome. And it produces some really interesting challenges from time to time. So I’m really excited to be here today. I really want to talk about social strategies and friendship building, especially as we’re in this pandemic.

[00:05:50] It’s a challenge in general with social strategies and friendship building, for our family members that are on the spectrum or have any type of intellectual disability and the pandemic has exacerbated that. So I’m hoping today to share some ideas with you all and some strategies and give you a little bit of a start to a toolkit to help you work on your own, with your schools, and within your families to kind of find those social strategies and build some friendships that are more than just, hey, we go to club together.

[00:06:31] So, Stella I’m ready whenever you are to move to the first slide.

[00:06:37] So what is friendship? So we all experienced friendship in different ways. And  I checked this out of one of my Psychology Today magazines, and the way they define friendship is there’s three types of friendship. There’s pleasure based. Basically you stay friends as long as you have a good time with the person. We all have friends like that. We have lifelong friends that we have that with.

[00:06:59] You have utility based friends because it’s convenient to do so. So a lot of times those utility based sort of the people that we interact at work. That maybe your colleagues, it may be acquaintances, it’s people that you see on a regular basis and may or may not do things outside of work or school or whatever. But you stay friends because it’s convenient and gives you that human connection.

[00:07:25] And virtue based is what is considered out of reach for most of us. But basically the way Psychology Today describes it is it’s the best kind of friendship pursuing virtue daily together. And the way I interpret that is, is those are the friendships that are long lasting. Those are our spouses. Those are our deep friends that we’re very connected to emotional. That’s really what we want for all people.

[00:08:04] And I think that’s what’s really important is that regardless if you have an intellectual disability or not, you want that human connection and that intimacy that comes from friendship and relationship.

[00:08:21] So today, I’m going to talk a little bit about how we move from that utility based kind of friendship, to a more virtue based.

[00:08:31] Stella, whenever you’re ready. So this is a quote from Ralph Waldo Emerson, and I’m not gonna read the whole thing, I’ll let you kind of see that there, but there’s something that I want to pull out for you, about halfway through there’s three little dots and it says, the condition which high friendship demands is ability to do without it. That high office requires great and sublime parts. There must be very two before there can be very one.

[00:09:01] So this is really important. Loneliness is very real. Loneliness exists for those with disabilities on a level that most of us really can’t understand. There is often desire to connect with others. But there are many barriers that tend to get in the way. And one of that is that concept of how do we make connection with someone else before we can reflect on our own self. Instead of the other way around.

[00:09:42] So, I really liked this quote. It helps me to remember, very often, that we need to look at each other as human beings first. And at the ability rather than the disability.

[00:09:57] Stella, whenever you’re ready. So using your chat box for a moment, if you feel like it, tell me how you define friendship.

[00:10:17] Stella: And Amanda, sometimes they might need to do it in the question box.

[00:10:21] Amanda: Sure. Not a problem.

[00:10:23] Stella: I have found that sometimes that seems to pop in, quicker too.

[00:10:28] Amanda: Not a problem. Yeah. And use your question box or your chat box either way.

[00:10:39] Stella: I’m looking to see, might be a little delayed.

[00:10:42] Amanda: Not a problem.

[00:10:43] Stella: Someone that supports me emotionally. Someone who, someone you want to share all the good and bad stuff with.

[00:10:54] Amanda: Absolutely. It’s that emotional connection. I think sharing the good and the bad. You want another human being to share yourself with. This is the ultimate desire of all human beings. And I think that sometimes we get caught up and I know I’m guilty of this, I get caught up in all of the things I have to need. When I just need to get through the day.

[00:11:26] And I think, we just had one more come through as someone I could be myself without fear of judgment. That’s a big deal because I know that sometimes both my husband and my brother, they may present themselves a little differently. And they’re judged by that and that alone. And that’s really not friendship.

[00:11:50] What we really want to do is find a way for us as neuro-typical and those that are not neuro-typical to connect together to build something that can help bridge those gaps of being separated, such as a pandemic. Or those periods of time when transportation might not be available, et cetera.

[00:12:14] So great job. Great thought. Those very feelings that we have for ourselves is what we do for our friends with disabilities. So this how research shows us that persons with disabilities typically experience friendship. In school it’s usually through clubs or peer tutors or peer mentors.

[00:12:39] Often in middle school and high school, you will see groups that joined together and it’s very inclusive. And that lasts usually through about the year after they get out of school. Then what happens when our adults leave the school system? Well, what you find is that you have a lot of doctors or therapists, you have some paid staff, you might have Special Olympics. If you’re really lucky, you have some work colleagues.

[00:13:16] But again, these are those concepts that go into that utility friendship. Your friends because, well, that’s the only human connection you have. And I think what’s really important about that is that those aren’t friendships, those aren’t the emotional connections that we need to figure out how to sustain beyond the school walls. Stella, I’m good.

[00:13:46] So how do we shift from paid staff to authentic relationships? We’ve got to take a step back. I’ve really liked King of Queens and Kevin James, he cracks me up. We, as the caregiver, we as the teacher, we as the parent, the sibling, whatever. We have to take a step back from the relationship.

[00:14:16] I think one of the hardest things, for me, to practice what I preach is that if I step back, what bad things are going to happen? Will David be bullied? Will he be misjudged and have negative interactions with people in the community? Or will he have a meltdown? How will that be handled? The same for my husband is he going to say something that gets him in trouble at work?

[00:14:54] He and I just recently had some medical testing done and he looked at me in the appointment and said, can you take a step back? I can handle these questions, you don’t have to be a caregiver all the time. That was very eye opening to me. And I was so thankful, Stella actually reached out on the same day that, that conversation occurred and it made me really reflect on we gotta take a step back sometimes.

[00:15:27] Now we want to make sure that our family members, our students have the supports that they need. But we also have to give a little space. If we don’t provide some of those more natural interactions. If we’re always there to kind of support, be present, we really can’t ever allow peers to begin some of those authentic relationships that can carry them, that are peer directed, and that’s what creates the sustainability.

[00:16:03] So what prevents us from stepping back? Well, for me, it’s fear. My brother has had some very, very negative experiences with bullying, being misunderstood and having some law enforcement interaction. My husband has had some really, really negative experiences, taken advantage of and given alcohol when he was a minor, because he didn’t know better. He didn’t have the skills to interact with his peers.

[00:16:39] So what we’re going to do, and I really think, Stella, we had a little bit of technical issues that she really did a great job, making sure that we could see this, it’s about five minutes long. It is a Pixar short. If you have not seen this, it’s very powerful because it gives us a look at the power of peers. And that if we just take a moment to step back, we can create something for our children, for our siblings, for our spouses, that isn’t dependent on us.

[00:17:17] So Stella, whenever you’re ready, if you don’t mind to play that little video, it’s called Luke. And again it’s by Disney Pixar. And then we’ll just take a couple minutes to watch it here.

[00:17:31] External Video: All campers eyes and ears open and work with your partners to make a good loop.

[00:17:37] Why don’t you turn around? I’m putting you with someone new. Marcus, you’re late.

[00:17:47] I know, I know, my phone died. Oh, I can catch up with them, no problem just let me —.

[00:17:52] Hey, hey you’re with Renee today. 

[00:17:53] That girl who doesn’t talk?

[00:17:56] Yeah, she loves canoeing too.

[00:17:58] Doesn’t she always go with you?

[00:18:00] Just say hi.

[00:18:03] Hey, I’m Marcus.

[00:18:06] Why’s she’s sitting like that?

[00:18:12] So she can talk to me.

[00:18:14] I thought she didn’t —.

[00:18:14] Renee you’ve got this.

[00:18:29] So what’s up Renee?

[00:18:36] No, no.

[00:18:39] Renee, what do you want to do?

[00:18:51] [moans]

[00:18:54] All right, how about we do a quick paddle demo and get you back to camp?

[00:19:08] Ever seen the Canadian? It’s really just a modified J-stroke, not that cool.

[00:19:28] Maybe I should just take you back.

[00:19:30] Okay okay, I hear you.

[00:19:37] Renee, if you want to do something like specific, you gotta help me out!

[00:19:56] [whimpers softly]

[00:20:15] Oh, okay.

[00:20:19] Um, wanna hop out here and do your thing?

[00:20:29] [grunting]

[00:20:30] But we’re…

[00:20:30] Oh man, you didn’t even need to…

[00:20:39] Amanda: And Stella, if you want to stop the video here, we kind of get the point of the video. What I found most powerful about this video was that Marcus is often, like many peers we may encounter, that are a little uncomfortable encountering someone with an intellectual disability that doesn’t communicate the same way we do.

[00:21:11] And I think what as the video goes on and I encourage it you to get on YouTube. YouTube does have a documentary on the making of this short. It is based on a true story and a real peer friendship. I wish we had all the time in the day today, I would sit here and talk about this forever. Because this is what it really looks like.

[00:21:37] So in this picture, my husband is on the left, with the Star Wars shirt, and my brother David is on the right with his Tweety Bird shirt, and this is 4th of July. If you, you may not be able to tell in the picture, but I know neither of them were looking at the camera and these are the best smiles we had gotten all day. But the reality is neither of them have real friendships.

[00:22:05] My husband and I obviously we’re married, we do have friendship there. We’re spouses, and we’ve been married almost 27 years. But there are challenges there. He has very little connection with adults outside of the nuclear family. So my brother lives with us and my mom. And when I transitioned from the school where we both worked to the position at the coop, he imploded a little bit.

[00:22:40] He had a really difficult time with communication. He had a difficult time managing supervisor requests, et cetera. And so we actually had to go and work with a therapist to help us find ways for him to cope and to figure out how to interact with peers. That’s a really weird thing when you’re in your forties, I’ll be honest.

[00:23:07] But from that he has made connection with one person. And again, it’s really just a work person, but it was the start for him to make connection outside of just me and the family. And it’s not safe. He gets very anxious, very worried about what he says, how he interacts because he wants to stay safe based on his negative experiences.

[00:23:36] Now, the other teacher that he’s very close with knows he has autism, does a great job really communicating with him and making sure to reach out, to include him in things. It’s different. It’s very different. I fall into that role of, I want him to expand his wings, but I also want to keep him safe. Because I don’t want people to misinterpret who he is. David is hilarious. He is a big Elvis fan. He is a lot of fun, and he has a unique sense of style.

[00:24:23] Every year we go to the Tim Tebow foundation, Shine Dance in February, and he plans his outfits all years. It’s usually silver or gold Lemay paints, a jacket that has lots of rhinestones, etc. But if you met David on the street, because he does dress flamboyantly and we allow him to express himself, people will take a step back from him.

[00:24:53] He was bullied unmercifully in school and my mom actually pulled him out and homeschooled him the last part of high school because of that. He’s had friendships through his works over the years, but in doing that, he has encountered, he’s been taken advantage of, he’s lost money. People planted drugs on him, I mean, it goes on and on.

[00:25:22] But what we found is with some supervision and some instruction, he was able to connect with some people online. And he has a pen pal, and a very deep friend, they share their intimate thoughts together. She lives in the Netherlands. And we said, someday, when this pandemic is over, we’re gonna get him a passport and get on a plane with him and we’re going to go and meet her. But they send each other gifts, et cetera. And that works for him.

[00:25:53] He’s still lonely. He wants to get married. We encourage that. Trying to find ways to connect in the way that he wants to is hard. And I will say the older he gets and the older my husband gets, the harder it is. But what we’ve done is we still work at this every day. And what we are utilizing are some of the tools that I’m going to show you in our little toolkit today. So Stella, if you’ll advance to the next slide.

[00:26:35] So, where do we start? So one of the things that has been really powerful for us is the Special Olympics of Kentucky, now we are involved in our community program. David goes through spells where he likes doing some things and dislikes doing some things. But what we have done with that, is he has helped give me voice, to help special Olympics of Kentucky with their unified champions program.

[00:27:08] Stella, if you will click on that special Olympics symbol, that will take us to the unified champions page. So unified champions is separate from the community program. This is a school based program that involves three components. There is a peer based club that is peer run. There are adults there to kind of be on hand if situations arrive, but it’s all peer based.

[00:27:41] So the peers are part of that youth leadership, both disabled and non-disabled peers working together to spread disability awareness within the school and engage the whole school in the conversation about inclusion and what that means. It also has a sports component like traditional Special Olympics, but the biggest thing is your schools do not have to do all three parts.

[00:28:13] You can actually start with the youth leadership and start an inclusion club or a unified champions club where you begin building those relationships between your abled and disabled peers so that, excuse me, disabled and non-disabled peers, so that you can build those peer relationships naturally and be able to step back in a safe manner.

[00:28:41] What’s really important, this is not a special education thing. The way the leadership works with this is we really encourage the special education teachers, not to be the ones in charge of starting this inclusion club. We really look to parents or other teachers, coaches, et cetera, to build this program first with your non-disabled peers, so that we can really build relationships that are gonna last a long time.

[00:29:13] I’m very passionate about this program. In the Ohio Valley educational cooperative region, which is the 14 districts surrounding Jefferson County, I’m actually working with a lot of districts on this program because I’m that passionate about it. If your district has not heard about it, reach out to me. This is a great way for you as a parent or a parent volunteer, to really be able to get that message of inclusion and find a way to build friendships naturally within the school. Stella, if we’re able and we’ll go back and look at a couple of these other components.

[00:29:57] The other two items, that I will briefly mention before we look at KentuckyWorks is the Kentucky Peer Buddies Education Center and the Kentucky Peer Support Network. I encourage you as parents to familiarize yourself with these items. These were actually training programs that schools can be a part of to train non-disabled peers to work with their peers who may have a disability.

[00:30:26] What’s really cool about it, it again, allows for a very safe way for you as the adult to take a step back. What I particularly like about this program is working in a resource classroom, where my students had some of their academics taught with me, but they also had the opportunity to go to their classes with peers. We could, as a teacher, train our peers to understand inclusion, communication, really understanding what it means to be a friend to all people.

[00:31:10] There’s also a module on here. You’ll see, on the right hand side in the blue column, preparation for adulthood, what’s really important about that is that gives you as a family, some resources to build your toolkit, to help your children and your adults with disabilities continue to build those friendships.

[00:31:35] Stella if you’ll go back I’d like to hit KentuckyWorks. KentuckyWorks is probably my favorite resource and the reason it is my favorite resource is it is run through the University of Kentucky’s Human Development Institute and they are really working with families and with adults with disabilities on a variety of things.

[00:32:07] It includes employment, supports, but more importantly, they are providing connections to building friendships. And one of the things that they have on here are the programs I’ve talked about, they have the Kentucky Peer Network. They have the Peer Buddies, but the one thing that they have on here that I have found to be incredibly helpful is the I Belong. Now, it is a Canadian website, but what it does is it actually shows real family and some of the steps they have taken to help grow friendships.

[00:32:52] It’s got some great resources as a family member. It does make you have to take a step back, and allow the person with disabilities to make the decisions and be an independent person. That is hard and I will say, honestly, my brother needs a lot of supports. We have multiple therapists, doctors, the whole nine yards, but there are times where I can give guidance, but he has to make the decision. And I have to respect him as a human and an adult to make those decisions, whether I agree with them or not.

[00:33:35] So I really encourage you to take some time and check out that I Belong website. The other one that’s really neat is The Bright Futures. I really liked The Bright Futures, they have some really neat checklists that help you, as parents and youth, to be able to work with that.

[00:33:57] The Kentucky Peer Support Network I love. That is a school based program, it’s not just a high school thing. It really encourages that the moment a child with a disability hits the school system, whether it be preschool or kindergarten, we start building those peer interactions that can be lifelong. I really find them to be incredibly helpful and it’s just, it’s important. It’s important that we spend time looking at these things and educating ourselves to make sure that we have all the tools that we can at our disposal.

[00:34:40] And Stella we’ll head back for just a moment. I did forget to mention one thing with the Special Olympics of Kentucky’s unified champions program. What is really cool, is that this is not just a K through 12 program. Currently the Special Olympics of Kentucky is working with local universities, University of Louisville, University of Kentucky, Eastern EKU is getting ready to start this program, Murray State’s getting ready to start this program. Northern Kentucky University most likely we’ll be starting it in the late Spring.

[00:35:25] But they provide intermurals through the unified champions program so that your students, your children, can go to college with their peers, and participate in the social activities with their peers at the college level.

[00:35:42] The University of Louisville program is absolutely incredible. I have been blessed to actually watch a unified payer, a non-disabled and disabled pair, from Bullitt East high school. They graduated last year and they are at the university of Louisville right now, participating in the intermurals programming. And it’s just a neat thing to see. They do things that they set up. They go and do their thing and, it’s a beautiful thing.

[00:36:22] It’s what we all want for our children, for our siblings, to have that independent, fulfilled life with friends, and the possibility of their own families. Stella, we can go on to the next slide.

[00:36:43] So, this is actually a picture from the unified champions program at Bullitt East. They were awarded a national banner through the Special Olympics of Kentucky, excuse me, Special Olympics programming unified champions worldwide. Only five banners, national banners are awarded each year through ESPN and Bullitt East was chosen as one of those recipients.

[00:37:12] And what you see in this picture is an entire stand full of peers, adults cheering everyone on. It was just a really beautiful thing to see. And, we were really lucky to be part of that. Stella, if you’ll go to the next slide, I do have a couple of things I want to show you all.

[00:37:36] This was just my email address, if you have any questions or you want to reach out for more information, please don’t hesitate to email me at abruce@ovec.org. I have one more resource that I want to go over before I turn it over to question.

[00:37:53] Stella if you will click the next slide. And click on that first link for me, if you would, please. So this is actually a toolkit that is from the University of New Hampshire. They have an entire program in New Hampshire, that is built on disability. They call it the Institute on disability and it’s actually a college program for disabled and non-disabled peers and they are able to go there, and earn a certificate in disability studies and become certified advocates in the State of New Hampshire.

[00:38:37] If you haven’t had a chance to learn more about them, you can go to Amazon prime video right now and search the film Intelligent Lives. it is a documentary that follows four families and their work with their disabled family member, to talk about friendships, social relationships, and what the future holds. It’s absolutely phenomenal. I recommend everyone see it. It’s just a great, great thing.

[00:39:14] But what’s really great on this site, if you scroll down just a little bit, Stella, they give you all of these different books, that you can learn more about social skills. They actually, that I’ve included for you all, is the making friends with and without disabilities in school toolkit. It is phenomenal.

[00:39:38] I recommend you share it in your IEP meetings. Talk about ways to include your students. We all have to work together as a team. It’s very much worth looking at and seeing what’s there. They gave you some research articles as well, from around the country that talk about friendships and the need for lifelong friendships.

[00:40:01] So I really recommend you check that out in the toolkit. It’s a great starting point for conversations to really find a way, at the school level, to start building on this concept of inclusion and lifelong friendships.

[00:40:17] So Stella, I’m about five minutes ahead, but I didn’t know if there were any questions, that had come through or if anyone has any questions, I’ll be happy to answer them.

[00:40:31] Stella: I don’t see any right now, but I know people have some, so let’s give them just a minute. Tell me a little bit about your brother now and what is he doing? Does he work? Does he get out in the community? What are like, what’s his day look like? I think sometimes that helps folks just to kind of see what’s going on, in someone else’s life.

[00:40:55] Amanda: Yeah. So, the way our daily schedule looks right now, in the pandemic, due to some of his medical concerns, he is not able to work. But what he does do is he does artwork, that we enter in contests periodically. So he has pictures, photography that he does, paintings that he does. We are in the process right now of taking his poetry and we are going to self-publish his poetry. With my husband and I, if we are not telecommuting from home, but are in the office or my husband’s school, he has a schedule of chores that he helps with my mom around the house.

[00:41:40] My mom is also disabled. She has lupus, and isn’t able to get around so he will help make small meals for himself, and for her. And then he works on his books and such. And when we’re home, right now he and my husband are on day two of a poker tournament. They have chips and they have quarters from his coin collection. Right now my husband has all the quarters, and they are knee deep in it, and I can hear them in the background. It’s pretty heated.

[00:42:20] But that’s kinda what he does during the day. He does a little bit of chores, he works on some things, poetry wise. He does get on his phone. We do have a schedule of electronics, due to his mental health needs, we often have to be cautious in certain activities to make sure that it keeps him on schedule and doesn’t cause any additional behavioral issues, from time to time. But we have a good time.

[00:42:58] He is learning to bake. David and I on the weekends, or when I’m home, like for lunch break today, we’re going to make a cherry pie. My husband and I are working really hard with him to learn some more independent skills. David, has attempted to live independently, due again to his medical concerns that’s not the best support for him right now. But we’re working with him on several of those things. So, Stella any more information I can give on that? I’m very open.

[00:43:40] Stella: That was great. That was great. Someone did have a comment that just said they love the toolkit and thank you for listing the resources and sites so clearly. The information was just wonderful and, and you know what Amanda, I love that you share totally from your heart because, you know, that’s what I think a lot of times families want to hear. They want to hear the real stories. I know I’ve always been very open like that about my son Clayton and, you know, those stories are what people need to hear.

[00:44:12] So that is just wonderful that you know, you are you’re there and you’re more than willing to help. And, we just really appreciate that.

[00:44:21] Amanda: That’s no problem. I really believe in being open and I’m always willing to share more stories. husband and I are very open about that. My husband did not get a diagnosis of Asperger’s until he was an adult. I was 19 when we got married and we did not find out he had Asperger’s until we’d been married almost 20 years. And again, it was due to some communication issues we were having because our kids were getting older. Kids were getting older,. it just created some really interesting things.

[00:45:06] What’s really cool now is it’s really made him more of an advocate within the school setting for the students with disabilities and he can relate more openly. We share openly about him in areas like this. His supervisor knows he is on the spectrum. And, we’re working, right now, David and Phillip, my husband, and I and a friend of ours, we are actually working on a book, to kinda talk about our future. And what it  means to, we joke, please, this is not disrespectful, meant in any way, it just makes us less,  we’re the Tism family. We openly embrace it.

[00:45:58] I have a grandson who has speech delays, probably has Aspergers. He’s a nut, and absolutely hilarious. But, I just, I talk openly about our struggles as well as our successes. Because we have to do this together, we can’t do this alone. We have to work together. And the more we work together, the more we can change our country, we can change the world for everyone.

[00:46:34] And my husband is a nut and a half.

[00:46:36] Stella: Yes, absolutely.

[00:46:41] Amanda: He’s a mess. He was homeschooled most of his life, so that was why we did not know. His family had a very different view of medical involvement, which is fine, you got to do what you gotta do. But that was one of the reasons he didn’t get a diagnosis until much later. And, it’s really funny when you’re sitting in the therapist office and he’s going over the test and I sat there and went, oh, that’s the such and such for autism. And the psychologist looked at me and goes, are you familiar with this? I’m like, yeah, just a little bit, just a little bit. But we have a great time. We have good times and I’m always willing to share. Anything else Stella?

[00:47:29] Stella: Someone just commented and said that they loved hearing your husband’s stories. So –

[00:47:33] Amanda: Yeah.

[00:47:33] Stella: That’s great.

[00:47:36] Amanda: He’s, pretty funny. And, and I will tell you that, more than likely, you know, someone with a disability, you probably know more people with a disability than you do people without a disability. And that’s really important to remember that if we look at people just as being human beings, the disability just makes it a little different how we have to communicate. That’s all it is.

[00:47:59] Stella: I love that. Yes. That is so true. That is so true. Well, thank you so much. And I think, I’m just going to go over just a little bit about, we do every Tuesday, we do our Tuesday Tips and they’re at 11 o’clock and we’ve just decided, especially we started these in March and having webinars on Tuesdays and Thursdays and we have just continued and we plan on continuing with it. I think the information has been wonderful.

[00:48:30] And then every Thursday we have an additional webinar. So we are trying to cover as much as we can and help families, with some much needed information.  And we have a great resource on our webpage on COVID-19 with all of the information that we received from Kentucky Department of Education, the U.S. Department of Education, it’s just a great way to do a one stop shop where you can get all the resources and info right there on one page.

[00:49:00] And then we also have, what’s called our Kentucky SPIN enews. It goes out about every other week. And so we have links to our webinars and things like that. This webinar will be on our YouTube channel within the next week or so. So watch for that.

[00:49:17] And, if you’re interested in signing up for our e-news just go to our web page and you can do that. Also, at the end you will be prompted to complete one of our evaluations. We would appreciate it if you would take just a minute and fill out that evaluation,. It’s not long, just a few questions, but it lets us know some things that we need to know that maybe you have some suggestions for upcoming webinars. We would really appreciate your input.

[00:49:47] So again, thank you Amanda, for being with us. We so appreciate your openness, your honesty, and your real life experiences. And I know our families and folks that are on the webinar today appreciate that too.

[00:50:00] Amanda: Thank you very much Stella, I really enjoyed it.

[00:50:04] Stella: Absolutely. And thank you all so much and please complete our evaluation and everyone have a great day.

[00:50:09] Thank you.