CARDCast Episode 2: Interview with Trish and Nick Thoburn April, 2020 Ann-Marie Orlando: Hello and welcome to the CARDcast, a podcast at the University of Florida’s Center for Autism Related Disabilities. I am your host Ann-Marie Orlando. The mission of the UF CARDCast is to share with our listeners relevant information about who we are, what we do, and what we can do to help you. Over the course of our podcast series we will be talking to members of our own staff as well as our constituents and their families, service providers, and researchers who were doing groundbreaking work in the field of autism. We also have to give you a fuller picture in a better understanding of autism spectrum disorder and related disabilities. Thank you for joining us. Today, our guests are Trish and Nick Thoburn. Trish is a member of our UF CARD Constituency Board and Nick is her son. Welcome to you both. I have asked Trish and Nick to join us today, so they can talk about CARD services, specifically individual assistance to our constituents and their families. Trisha and Nick have first hand experience with CARD in our services, so we thought they would be great guests to talk about the constituent side of things So, Trish tell us the little something about yourself. Trish Thoburn: Sure. Hi, Ann-Marie. As you said, I’m Trish Thoburn and my husband Eric and I have lived in Gainesville for almost 26 years. And we have two sons. And our oldest son Nick on the podcast today with me today. And his younger brother, our younger son Matthew just turned 24 yesterday and he lives in Richmond, Virginia. Ann-Marie Orlando: That’s great! Thank you So, Nick. Tell us something about yourself. Nick Thoburn: Um, there’s way too many things to tell. I’ll put it politely like that. Okay, well maybe you can just pick one thing you want to say about yourself Nick Thoburn: Um, the only thing that really comes to mind is I like video games. That’s really I think all there is to it, if I could just pick on thing to say about myself. Ann-Marie Orlando: Okay, I like it. When I think about you, I think about video games, so that makes sense You guys have been longtime constituents a CARD I thought we would we talk a little bit about how how you have utilized the CARD services. Trish Thoburn: OK I’ll start this is Trish. Um, We first were introduced to CARD when Nick was about three years old. Nick didn’t have a formal autism diagnosis at that time. Nick had been born prematurely and had had a lot of medical issues early on. And still playing catch-up with the developmental milestones. So, we were a little surprised when one of the professionals we were seeing first mentioned on the word autism and that it might be a diagnosis that might fit for Nick. So, we were introduced to CARD at that time. And I guess the biggest thing we were really looking as most parents when you first hear the diagnosis of autism is you’re scrabbling for information. You might be not know a lot. Nick is 25 years old, so you know, 22 years ago there wasn’t as much information available about autism like there is on the Internet today. And so, CARD was probably our go to resource for the best and most accurate information. And they helped us make sure that we were getting the best early intervention services that we could for him at that time. And so, I would say the first, you know, introduction to CARD was really about support and information. And maybe reassurance because I think that is a very scary time for parents. Then as Nick got older, I think one of the biggest challenges for a lot of families who have a family member with autism is the schools and education. And, um again, because of Nick’s age a lot of things were really just quickly changing in the schools in terms of inclusion and what not. And CARD was a great resource in terms of helping us figure out what Nick needed in school in terms of supports, and what kind of setting might be most appropriate. And while CARD, you know, can’t make that choice for you, they were very helpful in giving us resources and giving us advice. I did call on them a lot during that time if I needed help preparing for an IEP meeting or I needed somebody perhaps attend an IEP meeting with me. And on occasion, CARD staff would go to the schools and do observations and give suggestions to not only my husband and I, but also perhaps just teachers about how to best support Nick. We also utilize CARD a lot during that time. I think one of the most important things they do is provide training and resources for families, teachers, other professionals. Started attending the statewide conference every year and attending any kind of local trainings that they had. It was really anxious for information and I found the training resources very helpful. One of the other things that was a nice side benefit of being associated with CARD was getting to meet other families. Certainly, we have, you know, other friends through school, in our neighborhood, in our church, and things like that. But it that was really nice to connect to other families from me, other moms that were experiencing some of the same things that we were. And Nick was able to make a few friends through CARD that he had some things in common with and that was a very nice side benefit of being associated with CARD. And then last but not least because Nick is now 25 we are in that post-school adult transition phase of our family life and so CARD continues to be a good resource and a good sounding board for how to help Nick be as independent at possible and what type of thinks we need to put in place to help Nick throughout his adult life as well. Ann-Marie Orlando: So, you sort of talked about from initial diagnosis to now in terms of how you’ve accessed the services along the way. You know sometimes are you I hope that all of our constituents know that, that you can sort of float in and out of services depending upon you know sort of when you need them because certainly the intensity of need and direction ebbs and flows with families. Do you agree? Trish Thoburn: Yeah, definitely and there was probably, you know, in the past 20 something years there were you know long periods of time. Months and maybe a year or two at a time when we didn’t have a lot of direct contact with CARD. It was not like I have a doctor’s appointment for a speech therapy appointment where you’re going on regular sequence for check-ups and things like that. I mean CARD is something that you can access when you need it. And that might say a high frequency during a time when we found the middle school transition pretty challenging. And so we were in touch with CARD a good bit during certain times of that transition. But then it might be a lot of other time where we aren’t in contact at all. So I think the way you described it. It kind of ebbs and flows and you can kind of come in and come out is pretty accurate for our experience. Ann-Marie Orlando: So, Nick let me ask you since you know you’ve sort of ebbed and flowed from CARD services along the way. What has been maybe your favorite thing about being part of CARD? Nick Thoburn: Hmmm.. that’s a tough question to answer. Ann-Marie Orlando: Yeah? Trish Thoburn: One thing I might ask Nick. Nick, do you realize that my friends was started by CARD, Ann-Marie and some other friends of CARD? Nick Thoburn: Um hm Trish Thoburn: Would you like to talk a little bit about your involvement in MyFriends and what it’s meant to you? Nick Thoburn: Oh yeah. Um. I made a I made a best friend there in MyFriends. Ann-Marie Orlando: That’s great. How do you want meet? Nick Thoburn: Well, there was this um, I can’t member what it’s called there’s this like retired horse place that we went to one time. So I’m going around and I see this kid playing a Nintendo DS. And so, I go up to him and I’m like whatcha playin. And it turns out, he’s playing Pokémon. Who doesn’t? His name is Ben and we quickly found out we had a lot of interests in common and we’ve been best friends ever since. We did kinda our friendship did kind of falter at one point in a pretty bad way, but we patched up and now we’re still friends. Ann-Marie Orlando: That’s great. Nick Thoburn: All be it since this coronavirus in going around, we can’t hang out until it goes away, which is. When that coronavirus goes away,is anybody’s guess. It’s really annoying me. Ann-Marie Orlando: Hopefully that will happen soon. So, did you have a birthday party and invite somebody from, invite your friend from MyFriends Nick Thoburn: Um whenever I have a birthday, I just trying to keep them just low-key you know. No big party just it happens and that’s it. Trish Thoburn: One of the things that, you know. Some of the services for CARD and something that you know I might access them and then somethings like Nick has gone to has been MyFriends and that’s that’s nice that that’s really been just for him. Although I have enjoyed getting to know other parents through that. But, somethings we do together and one of the things that CARD has annually unfortunately it was canceled this year due to the virus but is Stomp the Swamp and that’s something that Nick and I sometimes his Dad have always enjoyed going to together is Stomp the Swamp. Would you agree with that Nick? Nick Thoburn: Yep, I just hate it that I got canceled because Ben often comes along for the ride with us. But we managed to get together on that day so it wasn’t a total bust. Ann-Marie Orlando: Well that’s good. Yeah, our Stomp the Swamp event, we were sad that it had to be um cancel cancel this year but we’re optimistic for next year. So this is a question for both of you, Nick and Trish, what advice would you give people about CARD services? Trish Thoburn: Hmm… that’s a good question, Ann-Marie. I think the advice that I would give it to people is, you know, to really be persistent and take advantage of what CARD has to offer. As I said earlier CARD it’s not like, it’s not like the school where you go and you then they put you through certain tests or grades or activities. It’s not like a doctor’s office when you go in at certain intervals for check-up. It is a service that’s there. We wish that CARD had all the funding in the world and all the staff members that um that they could probably use to take care of all constituents. But they don’t, so you have to be you have to make sure that you stay on top of what trainings they’re offering. That when you call in and you need help, sometimes somebody I will get the able to get back to you right away and sometimes you you may have to wait a little while because they’re helping other constituents. So, I think the best advice I think CARD has a lot of resources. They have some very well-trained staff members. Um, they have some great programs to take advantage of. But you need to go onto their website and pay attention to the calendar. And you need to sign up for any newsletters and things like that. You need to be I guess a proactive constituent of CARD, if that’s a good way to put it. Ann-Marie Orlando: I think that’s a great way to put that, Trish. You know, we tell people all the time there are 12 of us and there are 5000 of you. So, yeah, it’s difficult for us to get to everybody. But we want to. Iit is our goal to meet everybody in our our catchment area with autism. It is our goal to connect with everybody no matter where they live. And so having people reach out to us first is usually the best best way to make that happen. It is just sort of getting the word out that they will need to do that. What advice would you give to parents who are new to ASD and have recently been diagnosed? What advice would you give them about CARD services? Trish Thoburn: I think a CARD services can be a very important tool in the tool kit for a family who is new to ASD. Obviously even since Nick was first diagnosed and autism was first mentioned to us 22 years ago, there are a lot of resources on the Internet and parent groups and books and things like that. And certainly, you want to take full advantage of that. I feel like I look to CARD a lot because I know that the things that they recommend are, you know, evidence based and that’s important to me. And you realize that, you know, CARD is not gonna be your only resource. You’re going to have to might have, most of us have many professionals that might be involved in our child’s life. Of course you have the education system. But I think that CARD is a great additional service and it is an important too in the tool kit for families. And I also say take advantage of the training because that’s been very helpful to me. And I like the fact that now with technology so much of that, even just like this podcast is something that you know, we wouldn’t of done five years ago. So a lot of the training now is done on webinars and it can be recorded so if you can’t so get to something live it’s something that you might be able to watch at night after your kids are in bed. So, taking advantage of the training, I think, is really important. Ann-Marie Orlando: Yeah that’s it that’s a great tip too. I think that it is important for everybody to know that we do have trainings and training available on the online both synchronous and asynchronous sessions. For educators and parents and anybody who wants to gain additional knowledge about autism and support for autism. And I’m also glad that you mentioned our support group. So we have our are my friends group, which is for young adults with autism. And then we also have a parent support group. We have a support group that’s just for women on the spectrum. And then we have another adult support group that meets once a month. We have one in Ocala. We have one in Lake City and we even have a support group for them for dads. And so we try to address all of the different populations that might be interested and need some support. Trish Thoburn: Yeah, and one final thing I think that I would mention that I think CARD helps families and individual constituents with ASD. I think it’s empowering for for us and for them. And you know, yesterday, I guess this World Autism Day. And so I’m just curious to ask Nick I think. Nick, what do you think is something that’s special about you that is really a maybe a good feature of your autism? Nick Thoburn: Well, I think this applies to a lot of autistic people. But often times autistic people will have specific interests and certain topics and they become like walking knowledge bases of those topics because they know so much. Ann-Marie Orlando: That’s that’s so true, Nick. And you have a variety of topics on which you are very knowledgeable. Video games being one of course. Nick Thoburn: Yeah and many many others but way too long to go to every one of them. Trish Thoburn: Agreed Ann-Marie Orlando: Yes, agreed, agreed. And so, Nick what advice would you give other people other young people like yourself? Nick Thoburn: Um, autistic or not autistic? Ann-Marie Orlando: Either one. Nick Thoburn: Well, this might sound like a really weird piece of advice, but for any of you out there who’ve seen the live-action remake of the Lion King. When Simba says, “Sometimes bad things happen to you and there’s nothing you can do about them so why worry,” just take that advice completely to heart. That’s all that matters. Ann-Marie Orlando: I think all of us can use that advice, Nick. Nick Thoburn: Yeah, especially with that virus ruining everything. Ann-Marie Orlando: Absolutely. Well Nick I can’t think of a better way to end this podcast than with that piece of advice. So, thank you, thank you both, Trish and Nick, for joining us today. I hope you have enjoyed listening to this podcast. I’m Ann-Marie Orlando with the UF CARDCast. Hope to see you next time.