Autism CaregiversBurnout, exhaustion, and isolation are common themes in the autism mom and caregiver community and Kate and Amanda know that firsthand. The desire to find support for caregivers inspired the entire More Than Project. With More Than a Caregiver, they work to provide and fund teletherapy and counseling for moms without worrying about respite care or balancing schedules. They also offer events for caregivers to make connections and find support. The More Than project is the brainchild of Kate Swenson and Amanda Deluca and comes as a great gift to autism caregivers. The various challenges faced by caregivers are often alarming and include negative impacts on psychological well-being, physical health, financial stability, and societal perceptions. Add to it depression and anxiety and you have a recipe for exhaustion and fatigue. The goal of Kate and Amanda Lynn Deluca’s project, More Than a Caregiver, is to improve the quality of life of autism caregivers. Through this program, caregivers are provided increased awareness through education, information, and discussions about autism and how to better their quality of life.
Businesses Supporting Special NeedsThe More Than Project partners with businesses to sell products with proceeds going back to caregivers, siblings, and teachers supported by the program. The nonprofit worked with The Spotlight Project, a business employing special needs workers who plan, design, sell, and ship bracelets. This was a full circle moment for the project in which special needs adults designed and sold bracelets in partnership with More Than a Teacher and funded sensory classrooms. The More Than Project is always looking to connect and partner with businesses that want to support autism families and caregivers. Kate and Amanda de Luca’s More than a Caregiver project explores multiple channels on how to interact with businesses supporting special needs families, not only with financial backing but with other resources too. One of the most optimized ways is to tap into companies that offer cutting-edge solutions for caregivers. There are several online Professional Employer Organizations that provide dedicated support to caregivers and organizations like More Than a Caregiver. In what form do businesses support these projects? It might be free medical and dental services, confidential counseling, access to daycare in their locations, and guidance on how to get through a health crisis, both physical and psychological. Most importantly, Kate and Amanda Deluca through their project extend a helping hand to caregivers, assuring them that it is okay to ask for help.
More Than Events – Autism Mom Support GroupKate and Amanda talk about a couple of events they have coming up including a retreat on April 29th and 30th in 2023 where I will be a keynote speaker. Events like these are great opportunities not only to get educated and empowered but to share and make connections with moms who understand your journey. They also talk about contests they’ve done for big giveaways to support siblings and the incredible advocates these children with special needs siblings become. You can find the More Than Project on social media as well as via Kate’s Finding Cooper’s Voice website! Get connected, get registered, and be a part of this amazing, supporting nonprofit.
Kate Swenson and Amanda DeLuca on the Turn Autism Around Podcast
Kate Swenson lives in Minnesota with her husband Jamie, and four children, Cooper, Sawyer, Harbor and Wynnie. Kate launched Finding Cooper’s Voice from her couch while her now 11-year-old son Cooper was being diagnosed with autism. Back then it was a place to write. Today it is a living, thriving community of people who want to not only advocate for autism, but also make the world a better place for individuals with disabilities and their families. Her first book, Forever Boy, was released April 5, 2022 and is a national bestseller!
Amanda DeLuca lives in Ohio with her husband Sal, and is a mom of 2 to Monroe, and Jackson. Her son is on the autism spectrum and is what inspired her to begin her journey through advocacy in the IEP process. Amanda works in educational advocacy and proudly serves families both locally and remotely to empower them to come to the IEP table with confidence while working collaboratively with their team. Amanda is a business owner and enjoys teaching at her dance studio, and writing for her blog Jackson’s Journey, Jackson’s Voice.
With both women being special needs mothers, they understood the stress, exhaustion, and struggle that comes with special needs caregiving and wanted to serve others with the support they wished they had years ago. As time went on, they recognized that supporting the caregiver was important but wanted to explore avenues to support the special needs family unit as a whole. This inspired the More Than Project as the overseeing body for More Than a Caregiver, More Than a Sibling, and More Than a Diagnosis
- What is the More Than Project?
- How the More Than Project supports caregivers, teachers, and siblings.
- What supports are available for autism moms and caregivers?
- How to register for upcoming More Than Project events.
- Managing stress and burnout in special needs families.
- Finding Cooper’s Voice
- More Than Retreat
- Forever Boy by Kate Swenson
- Kate Swenson: Finding Cooper’s Voice
- How to Advocate For Your Child with Autism in an IEP Meeting with Amanda DeLuca and Kirby Morgan
- The More Than Project Facebook
- Challenges of Autism Bullying, Dating Someone with Autism and Learning to Drive with Autism
- Siblings of Autism: Interview with My Son Spencer Barbera
- Join Coop’s Troops! – Finding Cooper’s Voice | Welcome to the Secret World of Autism
- Mary Barbera
- Mary Barbera on TikTok
- Mary Barbera on Instagram
Kate Swenson and Amanda DeLuca – Turn Autism Around Podcast Transcript
Transcript for Podcast Episode: 203
Autism Mom Burnout with More Than a Caregiver Founders Kate Swenson and Amanda Deluca
Hosted by: Mary Barbera
Guest: Kate Swenson and Amanda Deluca
Mary: You're listening to the Turn Autism Around podcast episode number 203. Today, I have two guests on the show talking about caregiver support online and in-person. We have Kate Swenson back for the very third time. She is the founder of Finding Cooper's Voice, Coop's Troops and the author of Forever Boy. And we have Amanda DeLuca. This is her second time on the show. She is an IEP master coach and they formed a nonprofit called More Than a Caregiver. And we talk all about what parents need, why they created this caregiver support group and some live events, one of which I am going to be speaking at in April. So it's a great episode. Catch up with Kate Swenson and Amanda DeLuca. Let's get to it.
Narrator: Welcome to the Turn Autism Around podcast for both parents and professionals in the autism world who want to turn things around, be less stressed, and lead happier lives. And now your host, autism mom, behavior analyst and bestselling author, Dr. Mary Barbera.
Mary: Okay. I am so excited to get to speak with Kate and Amanda. Kate Swenson from Finding Cooper's Voice and Amanda DeLuca, who's an IEP expert. They both were on the podcast before. Kate, this is her third appearance. And so today we are going to talk about their nonprofit called The More Than Project. But before we get there, I know we're going to link your other podcast in the show notes at MaryBarbera.com/203. But why don't we catch our listeners up? And Kate, can you very briefly describe your fall into the autism world and kind of what you're doing now?
Kate of Finding Cooper’s Voice and Amanda Deluce, IEP Expert on The Turn Autism Around Podcast
Kate: Yeah. So my son Cooper is now 11. He is a tween. He was diagnosed with autism at three and a half, could have been diagnosed much sooner, but we were still hanging on to speech delay, developmental delay, that sort of thing. We had some rocky years. We had some learning years. I created my Facebook page, Finding Cooper's voice, wrote my book Forever Boy, to help bring people into our world and find others that were like us. And flash forward, I'm here today sitting with, well close to, Amanda, I guess, to talk about our nonprofit. So excited.
Mary: Cool. Okay. And Amanda, why don't you tell us about your fall into the autism world.
Amanda: So right around 12 months, we started seeing language regression. He wasn't responding to his name, wasn't making eye contact. So we started asking for referrals. But it wasn't till two that we got our official diagnosis waitlist and things like that that we're all aware of. And Jackson was non-verbal until the age of five, so that's really why I dove into IEP advocacy. I knew I needed to know how to get him the support that he needed. I write about our journey on a very small scale, but because we do see some aggressive behaviors and some things that are a little different than what other people are sharing sometimes. And then I do IEP advocacy work, which is how I met Kate through writing, and we now have a nonprofit.
Mary: Cool! And so, Amanda, you are in the state of Ohio.
Amanda: I am.
Mary: And Kate, you're in Minnesota?
Kate: Mm hmm.
Mary: Okay. So you guys met just online at first. Right?
Kate: And we actually met through a program called Vitals is how we met. We were connected. It's a program that connects police officers to children on the spectrum. And the founders of that came to me and they're like, We know this amazing mom. She's like a superhero. Her name is Amanda. And I popped into one of your lives, right, Amanda?
Amanda: Yes. Yes. I fangirled so hard.
Kate: It was a million years ago!
Mary: What's the program called?
Kate: I don't even know if it's up anymore, but it was called Vitals and it connected police officers to... Kind of like Project LifeSaver in a sense. Yeah. And then from there, Amanda followed me. I followed her back, and she just became such a huge part of my online world through blogging and through leadership and different parts.
Amanda: I'm pushy. I pushed my way in.
Kate: Yes, yes.
The More Than Project
Mary: Well, and I've met you both just online so far, but we will be meeting in person this spring, hopefully. But why don't we start with the beginning? When was the More Than Project founded? What is it? How does this all work? Because I really, like my listeners, I know very little about it.
Kate: I have always had, well not always, but since Cooper was little, I had an online presence that has grown fast. And when you live in the world of social media, there can be a lot of negativity, there can be a lot of just unkind things that happen. And I really wanted to build a community of moms, and I really wanted to find a safe space, and then I wanted to fill my cup up. I'm going to be honest that it's great to, like, talk about different products and what helps us, but it's not where my passion lies. My passion is with moms and moms who are struggling. So during COVID, I really did a big push online through my supporter page to reach moms where they were at. So lots of live videos every day bringing on guests like Amanda and other people. And one thing started to rise to the top. You take an isolated group of women of caregivers, and you make them even more isolated, right? So you're taking away their children's therapies. You're taking away that one trip they go to respite for the week, and suddenly you have moms that are not getting the mental support that they need anymore. And they were coming to Amanda and I. Kate was rising up through comments and messages saying things like, I can't do this anymore. I'm heartbroken, I'm alone. There's no help. And, you know, what are you doing? I'm in Minnesota. She's in Ohio. What do you do? You launch a nonprofit.
Amanda: So our first focus was the caregiver, like Kate said. And we came with this idea of more than a caregiver. And we wanted to provide caregivers who were struggling with free telehealth, counseling services, free of charge in their home. They could do it after their kids went to bed. They could do it while their kids were napping. They didn't have to worry about respite, we wanted to bring all the barriers away and just bring counseling services to them. As we started to see this evolve, we're like amd the siblings are struggling and the teachers are still showing up. How do we support everyone? So what started as more than a caregiver umbrella into The More Than Projects so that we can serve all of the people who support the special needs family, especially the caregiver.
Mary: So do you financially support telehealth counseling? Is that one of the things that the nonprofit does?
Kate: Yep. So we started out super grassroots. One thing about Amanda and I is we're big doers. So we're like, here's what we want to do. Let's find some money. So we started out just really simply raising money through t-shirt sales and online donations and, you know, rallying people with the stories of these female caregivers who are struggling and raising the money. And what was nice was during COVID, there was not a moratorium on areas that counselors could serve. So counselors in Minnesota could counsel anybody because things were done via telehealth. So it was very easy in the beginning. And we found counselors that understood the special needs family dynamic, which is something I've had a hard time finding. I went to multiple counselors and I'm, you know, explaining some of our situations and they're like, Oh, I don't understand what you're going through. Mary's nodding. It's very common. So Amanda found a, you know, wonderful agency that was able to partner with us and offer counseling to all the states. Then wonderfully, COVID was lifted or some of the restrictions were lifted, and suddenly we had to find individual counselors in each state. So now we're doing things a little bit differently, but hope to be back up to speed nationally soon.
Mary: Okay. So I know we're going to give the, you know, website and things at the end, but for those of you, those are listeners that are at their computer right now. Where's the website or where can they go to find out more and also to make a donation? Or if the caregiver does... Is interested in some telehealth or counseling, what's the website or what's the area they can go to?
Kate: So it's still under my website, which is FindingCoopersVoice.Com. And then there's a button for foundation, but a really great way to get a hold of us too is Instagram the more than project or Facebook same, The More Than Project. And there's, you know, different ways to donate or support us, even by buying products that we have partnerships with or just as just a straight up donation.
Mary: Okay. Yeah, I think I saw that you were partnering with organizations where adults like Lucas, who's 26 years of age now, like he might work somewhere and make things that you end up selling and proceeds. Some proceeds go to The More Than Project. Do you have a lot of these organizations or like, what do you sell? And is this all on the foundation part of Finding Cooper's Voice?
Amanda: So the bracelets are what you saw, and that is through the Spotlight project. And it was a school therapist who reached out to us and said, I employ adults with varying disabilities and they come into work. They do the planning, they do the making, they do the photos, they ship the orders. So it's this full circle life skills moment. And what we did in the beginning of that project was all of that money went to our More Than a Teacher initiative, where all of the money raised from these bracelets, $5 from each bracelet, went to buy sensory equipment, and we were able to give away three fully equipped sensory rooms through a partnership with fun and function. So if you go to the website link, the More Than Project bracelets are still there under The Spotlight Project.
Kate: Okay. It was a full circle moment because it was employing kids like ours, right? They're being paid livable wages. They're doing all the work, they're learning, they're growing. And then we're giving back the money to the teachers who are helping the kids become, you know, it was so fun and people just loved the project, which really, you know, made us realize what we were doing matters.
Mary: Yeah, because just like your kids were displaced and therapy started to stop during COVID, adult services also stopped during COVID and were very disrupted. Lucas used to go to a pre vocational program, in the past these have been called sheltered workshops. But it was a mile from my house and he was happy to go there Monday through Friday from 830 to 3 or something like that. And it was working for our family and then it abruptly stopped. And so he's doing well. He's the only person I know that lost significant amounts of weight during COVID. He lost like 50 pounds and kept 40 of them off. People are like, how did he lose weight during COVID? But he used to eat a lot there and he was very sedentary. And so it wasn't ideal. It was kind of going downhill for him and his needs before COVID. But it was something that I probably wouldn't have stopped because, you know, he was going somewhere. He was safe. He was relatively happy there, you know what I mean? But when it did stop and then he could go back part time, but he never wore a mask and all this hoopla, I was like, you know what? He's now I have services coming to the home and he's volunteering at the food bank almost every day. And we kind of found another path. And so for him, it doesn't have to be like, this is it? And when something gets displaced, it doesn't mean that you have to go back and you know, you might find different ways. But I know for Lucas and so many adults, like making things is a strength and putting things together. And, you know, it's great that your More Than Project actually partners with people and really brings a full circle to bring meaningful work to these adults and then to benefit caregivers.
Kate: We're always looking for businesses. So one of our ideas for I'll do a little sneak peek, one of our ideas for Christmas this year is maybe in November as people are shopping to highlight maybe five, six, seven different businesses, just like The Spotlight Project, because, you know, people want to, you know, give to good causes and it's fun to have a gift to give as a result. So that's one of our hopes for we're seeking out businesses now.
Mary: Yeah, that reminds me of a podcast that I did with Suzy Carpenter, she’s a mom and her daughter Kelly, who grew up around us, and she's Lucas's age. But Kelly drives and she takes beautiful pictures, and I think she has an Etsy store so we can link her show in the show notes here. And also, she might be one of those organizations that, you know, you can get a pack of four cards and they're nice, thank you cards. And it really does support somebody on the spectrum, which is awesome.
Amanda: So we were able to connect with Suzy. She sent boxes and boxes of delicious pretzels for our retreat that we just had in September. She's amazing. She's a wonderful mom.
Mary: Yeah. Yeah, she is. And she's a good friend of mine, so that's awesome. So you're already connected and we can definitely link that in the show notes, it's a great, great episode. Okay, so you also did something with siblings, the more than sibling project, so can you talk about that?
Kate: So I have a huge passion for siblings. I think Sawyer was two years apart, two years younger than Cooper. Still to this day, I have healed from so many things that have happened. I have grown so much, but I still have really big feelings around sibling guilt and I speak very openly about that. My book Forever Boy, I talked about it publicly and we wanted to recognize it. And how did we word it? The tiny ones born into advocacy, the tiny humans born into it. And, you know, that's what Sawyer was. Sawyer was born into this. And he suddenly is advocating at school and for his peers and during his conferences they're saying, you know, he may be behind here, but he is a nice kid. And that to me is because of Cooper and because of the way we raised him. So we held a, i'll call it a contest, but like we just asked for nominations of siblings and they didn't all come in from mom. Some came in from aunts or friends or different people and put together a little video, a little compilation, real, and picked three winners. And we wanted to give them some sort of scholarship to bring them something that they wouldn't normally get, like something that would never happen, like a trip to Disney World or, you know, something out of the norm. And it was really fun. I think we should do that again. I mean, we'll probably do that again every year.
Mary: Yeah, that's awesome. Well, as most listeners know and you two know, I have a son who was 18 months younger than Lucas, and his name is Spencer, and he is actually on the biggest fan favorite podcast ever is my interview with Spencer, who's in med school now, and we did that in my video studio live when he was home during COVID, before he started medical school and flew back to New Orleans. So we will link that in the show notes. And in a lot of ways, like, I don't know your son and you have a daughter, right? Amanda. You know, in a lot of ways that the Cooper and Sawyer connection and the younger brother being the advocate is just so, so it reminds me of Lucas and Spencer in so many ways. So we'll link that in the show notes. But yeah, we talk, we don't just talk about Spencer and his experience, but we talk about siblings in general. He didn't want to see any of the questions ahead of time. I did some research for the siblings and asked him some questions and he's quite an advocate. And even when he was, you know, going through high school, Lucas went to the same public high school when he was in special education. And some of the higher language kids were in Spencer's class in the musicals with him. And of course, I remember a choral trip where, you know, there was a boy that was, you know, fully conversational, but he was definitely on the spectrum. And Spencer knew that. And like somebody came up in New York City, it was like, hey, can I borrow, you know, some money? And it was kind of targeting this kid, a stranger. And like Spencer told me, like, he went over, he told the kid to put his wallet away and told the guy to get lost. And, you know, like I, I think our kids just have that radar of like, hey, here's somebody that needs more help. And I think they'll all be really amazing advocates and very resilient in the end. But it is tough when you do. You're like, man, you know, so much focus on autism, so much focus on splitting up as a family. And we can't really do that because how's that going to be? And it's hard to kind of include the whole family unit for a lot of things. We just went to a family wedding, though, and, you know, like it is special when for my family at least we're getting to the point where it's just not a struggle. It's just, okay, Lucas can do this. Lucas will be happy there. And Lucas danced. He loved it and he had a great time. So.
Kate: Yeah, I just did a book signing in Arizona and it was a great turnout. It was so fun. And this little girl, I heard, this little voice, she raised her hand. She had been like six or seven. And she goes, Does Cooper ever hit you or Sawyer? She said, Because my brother, he hurts me sometimes and he hurts my mom and the mom sobbing next to her. Right. I mean, and trying to hold it back. And it's like these kids, there are so many blessings to having a sibling with a disability. I firmly believe that. But there are hard parts and sometimes we brush over them. So, you know, Amanda and I were like, let's recognize some of these kids. Let's just tell them that we're thankful for them.
Amanda: And we had a retreat in September where we were able to bring caregivers together in person, which is a whole thing in itself, the power of that. But one of the speakers, her message was doing what's best for your whole family, because like you said, for so long, we're focused just on autism or just on whatever the disability diagnosis is. And that's a real mind shift. I think for us with two littles is we have to start looking at the whole family because there is a life to live and there are experiences that my daughter also has to have. So I think the permission to think that way is important.
Mary: Yeah. And you did just do a camp like weekend camp. It looked so much fun. I didn't know anything about it. I was like, That looks amazing. So is that part of the More Than Project too where you hold in-person events?
Amanda: Yes. And it was a surprise because I am the planner, Kate. Yes. So we were on a zoom planning to discuss the opportunity. And the woman who organizes the camp was like, well, you should come. Kate's like, Yes, we will be there. So I panicked, but it was amazing. It was like we sent 90 moms away to summer camp for three days. We were worried that we wouldn't even have 15. That was the minimum to hold it. We ended up with about 90 to 95 and we were worried about icebreakers and games and getting to know you activities. And from the minute they checked in, the lake front view was full of moms sitting in chairs and the fire was full of women sitting around the fire, sharing their stories, talking about their children, talking about themselves finally, because I think we forget how to do that a little bit. And we were able to bring some tears, some laughter, some amazing giveaways and just really build bonds. Kate, I think you shared about it. One of the moms said, I received more support in the 48 hours I've been here than I've ever received before with a child with autism.
Kate: Wow. She actually had skipped her. I mean, everyone has a story. Mary can relate this to the size of her platform. But like everyone has a story and everyone tells their story and they're all powerful and they're all important. And what we did was we gave 90 women the opportunity to share their stories and they could share it, you know, privately or they could stand up and tell their story. But, you know, one of the women that the quote that Amanda said, she skipped her sister's baby shower or wedding shower or something because she needed this. She's like, I need this. Another mom told me that the same day her son was diagnosed with autism, her nephew, the same age little boy, was diagnosed with cancer. Very tragic. And he and he's fine. He's in remission. But she's like, I got no support for my son with autism for two years because we were so focused on and all these stories rise up to the top and it's like we just gave these women an opportunity to just share. And that's all they're looking for is to share it for someone to understand.
Mary: And I don't talk about this much, but when Lucas was diagnosed, it was 1999. So as before really any what was before any Facebook groups or before any online platforms? I mean, online AOL and, you know, the very primitive Internet was kind of available in some households. So I was just like he was diagnosed and I was looking for a support group and the support group that was just hobbling along like closed. And I was like, well, this is nuts I mean, people need support. So we found me and my five friends I met just right away on the journey. We founded the Autism Society in my county and it was a lot of work. I mean, you guys, you're kind of like, Oh yeah, we started a nonprofit and we're raising money and we're partnering like that all takes for those of you listening hours and hours and hours and hours. And these two women are already up to their eyeballs in work and opportunities and dedication to their families. And it's amazing that you guys would even bite off any of that. So I applaud you for that. But some of my dearest friends are still my autism mom, friends that I met at the very beginning. And because I have such a wide, you know, over two decades here, and as both a parent and as a professional, I've worked with many of the kids in the county through a statewide grant that I was in schools working as a behavior analyst, helping teachers and speech therapists. And I got to see kids like I go to the gym, you know, a couple times a week and work out with a trainer and the kid that comes after me. I worked with him when he was in fifth or sixth grade. I had no idea that he'd be able to drive, to have a job and to go to the trainer. It's amazing to see where some kids have been and where they have come full circle. And I see families. Getting through tough times and also getting support. I mean, but the online community, like, I have a community with my courses and you can get very, very close to people and never meet them online. I will never meet them in person, you know, like, in fact, we just Kelsey, who works with me, she does a podcast with me. She by community matters, she lives in British Columbia, Canada, and we never met. And she's been with me since 2016 in some capacity. And we just met in August of 2022 when I went on a cruise and we stopped in British Columbia, Canada, and she and her boys came and met me. But it's so special, like, to have that physical connection, but at the same time, it's really not necessary. You can get very, very close to people and get a lot of support online. And I know with Coop's troops, which Amanda and I are both a part of, that's Kate's paid Facebook group. It's a very minimal charge every month. But I mean, that is a lot of support and. I'm sure people meet there all the time and meet offline as well.
Kate: In every presentation I do my message that, you know, always rises up is to find one person. So whether you're finding them online, you're finding them in person, wherever. Just find one person that you can exchange a number with and text and message and send funny photos to, whatever it may be. It's life changing to have that one person. And one thing I want to add about the event that we just had. So I've been hosting events now for a couple of years, and I always think it's going to be Minnesota people, right? I mean, it's going to be 100% Minnesota people, maybe some Wisconsin trickling in. My event that I had last April for a couple hundred moms, 75% of the people flew in this event that we just had because we didn't do the registration, the camp did the registration for us and people were checking in. We have Massachusetts, we have California, we have Ohio, Indiana, Georgia, Montana. And we're like what? You know, you flew in and then you rented a car, drove four hours, and someone came alone. They needed the support so badly. So, you know, people are always like, I wish this was close to me. Well, if you can financially make it work, if you can get a grant or if you can use your waiver money or whatever, you can come and you can be part of this experience.
More Than Project Events
Mary: Yeah. Yeah, that's awesome. So I know you were planning a big event. April, is it April 30th?
Kate: 29th and 30th.
Mary: 29th and 30th. April 29th and 30th. It's over a weekend. And there is an excellent chance, 95% chance that I will be presenting there as a keynote and maybe some breakouts and stuff like that. So let us know what that event is going to be. Where is it going to be like vicinity wise and what you're hoping this is all through the More Than Project too?
Kate: Yeah. So this will be the second annual event that we're throwing in Minnesota and it's a two day event this year. Last year was one day. Last year there was a beautiful brunch on a Sunday. My keynotes were Carrie Yellow and Jackie Moore of Jordan's Summer Shirt project. So proud of those two ladies. I call them my friends. They're just inspiring. And we just pampered women for a day. That's what we did. We had about 155/60 women that just kind of went for it. Right now this year we got the feedback that it was too short, there was not enough time with me, which I understand. People do come in a sense to say hi and to give me a hug and tell their story. And so this year we're going to have it as a two day event. So Saturday will be a typical education type style day with hopefully Mary and other speakers and breakout sessions and then time with me. And then Sunday will be that beautiful brunch with, you know, champagne and mimosas. And Adrienne Wood or Tales on Educated Debutante is going to be the keynote for that day. I'm sure she's going to bring in a lot of people with her, as she typically does. And, you know, the focus, again, is just I always keep going back to the care for the caregiver. It's like, let's just bring these women together, let's connect them. And I'll tell you, a lot of the fun that happens isn't at the actual event. It's at the hotel that everyone stays at. They have so much fun. Women break off and have dinner and get to know each other. And so even if you, you know, you don't know anyone will come. It's so wonderful.
Mary: Yeah, it sounds amazing. So how can people kind of start looking for that information and registration? Because I'm sure it's going to sell out. You're you're planning on like.
Kate: It will.
Mary: 250ish people, but it's going to sell out. So how can people kind of get in on the waiting list to find out more?
Kate: Yep. So registration almost like we open up in November. We want to give people enough time to plan the fee for the whole entire weekend, not including lodging, but for the events and that sort of thing will probably be around $200. And we know that that's a substantial amount of money for some people. So we want to make sure people can plan for that. So the website will be live soon. Mary it might be live before we even go live. So we'll have that for you to share in your show notes. And the other thing that we're looking for is we always want sponsors. We want businesses that care about these families, that care about these moms to donate, whether it's products or cash or time or whatever it may be. We want to recognize those vendors by giving them logos on t-shirts and logos and pamphlets and whatever it may be, and recognition. Not many brands understand how important this group of Caregivers is, so when we find ones that do, we shout their praises from the rooftops.
Mary: Yeah. So just keep watching Finding Cooper's Voice. If, by chance, registration comes out before this episode airs, I can certainly put it on social media. And, you know, we're just finalizing me doing the keynote. But I mean, I'm super excited to meet both Amanda and Kate and a lot of the moms. And there's many moms that are big fans of your work as well as my listeners, my course participants. There's a lot of overlap because I think you guys I mean, Amanda is like a key with IEPs and those sorts of things, which is so critical. Kate you're, you know, so supportive and caregiver support and I'm more of educating yourself to become the captain of the ship, be the coordinator and make it work. But I think we have three different lenses for the same audience that were there to support them and in all of these areas. So I think it's a great connection. And I'm sure our listeners will really want to know more. And if they can't make it this year, you know, this seems to be going to be an annual thing. And yeah, it'll be super fun too, to get out there. It will be my first event, probably in person since before COVID. So.
Kate: Are you in California?
Mary: No, I'm in Pennsylvania.
Kate: Okay. And I'm coming to Pittsburgh.
Mary: Are you? When is that?
Kate: Have you heard of the Autism Caring Center?
Kate: Have you, Amanda?
Amanda: I have, I would say it's only about 45 minutes from where I am.
Kate: I'm going to be the keynote for their presentation in April.
Mary: Oh, okay.
Mary: So you'll have to send information on that. We can put that in the show notes, too, even just the general website so people can attend. I'm about 5 hours from Pittsburgh, but only about an hour from Philadelphia. So I'm more on the eastern side of Pennsylvania.
Amanda: And if people can't make it in April, we have the caregiver respite retreat in September, September/October.
Mary: Are you going to do more of a casual camp thing again in September, or you're going to vary it. You're thinking, yeah.
Amanda: The cabins were the best part of the whole thing that we didn't anticipate being there. Like Kate said, you know, a lot of the connection comes in the hotel after one parents break off. And that's exactly what we saw here in the cabin setting. It was a lot of fun. It was so interesting. And like Kate said, the further they drove towards the camp, the more they unplugged, the more they relaxed, the more their worries faded away from what they were leaving at home so that they could truly rest and reset. It was amazing. We had tears, we had laughter and one of our trips. Oh, absolutely. One of the speakers, Charlotte, said her message was, everyone in this room has problems and everyone in this room is the answer to someone else's problem. And I thought that was so powerful because like Kate has said, like you said, Mary, we all have a story to tell that is the answer to someone's problem. Just sharing your story and getting the support from other moms I think is just so important. So if they can't make it in April. We have another event.
Mary: Alright, cool. Well, I like to wrap up the same way, and maybe we can kind of do an extended version. But part of my podcast goals is not to just help the kids, but help the parents and professionals listening be less stressed and lead happier lives. So all of your years of experience and even just the last couple of years, where with the More Than Project, like, what are your top tips for stress relief and stress management being happier self-care skills? We'll start with you, Amanda. What would you tell a caregiver? And does it depend on what level of functioning the child is or the age of the child like. So can you talk if you want to give kind of tips for different situations or if it's all the same from your mind?
Stress Relief and Stress Management for Autism Families
Amanda: So as my husband and I have worked through the struggles and the changes that come with autism, one thing that we have learned is we are saying one thing, but we mean something else. So our communication is broken down there. Functional communication has really helped us both say when we need a break, when we can't do it anymore, and when the other person needs to walk away. So for a long time I would snap or say something that was maybe a bit sarcastic and that wasn't doing anyone any good because I wasn't telling him what I truly needed. I need to walk away. I need a break. I need to reset. So now what I'll do is say what I need to say and then say. But what I meant to say was and clarify, because neither one of us can be all in all the time. We have to be able to walk away so that we can stay calm, stay at de-escalation. So giving the other person permission to say, I've got this and you can walk away, or the flip of that has been really helpful for us to preserve ourselves when things are very escalated and chaotic. So functional communication is really hard for adults. It's really hard for adults, but we've really worked on that and it's helped us feel better about ourselves and be able to stay more grounded in this journey.
Mary: That's great. How about you, Kate? Do you have any stress management tips for us or self-care skills?
Kate: I do. I have a few things. I'm a mom of four, so I feel like I just live in constant chaos and mess and noise. And it is what it is. It's not an autism thing. It's a kid thing. My number one piece of advice I always give families is make your home a safe space, make your home a fun space. And in our case, we can't really go to many places. Autism makes that more challenging. We can't really do restaurants or travel or so. We work really hard to make our home a fun space, whether that's a theater room or a swimming pool or whatever outdoor movies we do, all of those things. We also make our home safe. So when we're here, we're not walking on eggshells. That means door alarms and fences and locks and cameras. It's life changing to be able to sit in one space and know that your child is safe in another space. Well, I always say once you've reached out, you've reached the second half of life, ask for help. I know this sounds so silly, but for ten, maybe nine, ten years, I was too proud to ask for help. No one could help me. No one could help me. No one could care for Cooper like I could. I didn't want to bring them into our weird world. I didn't want to burden them. People really do want to help. I have friends that I've met on this autism journey that really do want to help. Maybe it's not your mom or dad, but maybe it's a friend from high school or a friend that you've met in groups, trips, or whatever it may be. Ask for help. Another one is to share your story with the people that can make a difference in your life. So be open and honest, whether that's a social worker or a teacher or a therapist. I sugarcoated everything. I was that dog and the burning fire drinking the coffee, the meme saying, It's fine, it's fine, it's fine. It wasn't fine, it wasn't. And I was able to make it out of it. But some parents can't. Some parents get stuck there. And the last thing that I want to say is that this has been the most life changing thing for our family, is to find something that you can do as a family. Find one activity. We didn't have one thing that we could do together outside of our home for ten years. Now, that puts a lot of stress on siblings, that puts a lot of animosity, splits your family in two, and it means one's going and one staying. And there's anger there and there's frustration. Our thing is boating. So we found out that Cooper loves to go on the boat. He will spend time on the boat. So do our other kids. But it took us ten years to figure that out. So if you're a mom listening to right now and you're like, there's nothing. There's nothing, there's something, keep pushing and keep digging to find it.
Mary: Yeah, that's awesome. And for us, it's restaurants. Lucas always loves to eat out. He would eat out every single meal. So for us, it's restaurants. It is always a given that we can do that as a family. But, you know, there's been so many things that we can't do and it's just not fair. You know, it's not fair, you know, to a sibling to have to deal with that on top of a birthday party at an ice skating rink or whatever that, you know, if it's the child with autism isn't going to end, is it's not just the sibling, but like if that child we didn't bring Lucas on a family cruise, my whole extended family, I actually won a cruise on an online marketing competition and 15 of us went and we left Lucas home with caregivers because it wasn't just like he's going to like he's not going to impede on our fun. He's just not going to have as much fun and peace as he would in his own environment without all the changes and without disrupting his routine. So I think those are all great points. It's like, look for things you can do and for boating. That's amazing. Lucas actually does like to boat, but we don't. We don't go boating that much. But, yeah, I think that's great. Alright. Well, I am thrilled to know more about the More than project. I think you guys, my hat is off to you for taking this on, creating this. I really see it expanding and being much more than two live events, which is huge a year. I mean, our local Autism Society is still going strong. There are support groups that are still in your local area if you want to try to find them, you know, search for local autism support groups in your city and state. See if you can connect with people locally because they also know kind of where the services are or who's the good occupational therapy or if there's waiting lists here or there. So connect with people locally if you can also connect on Finding Cooper's Voice and Coop's Troops. There's lots of ways to connect. And I think all these ways we need it. We need a lot of support. So I'm so looking forward to attending and speaking at the More Than event on April 29th and 30th. Mark it on your calendars, find out all the information and register early because I am positive it will sell out. You guys are amazing. Thank you so much for your time.
Kate: Thanks for having us!
Amanda: Thank you.
Mary: If you're a parent or an autism professional and enjoy listening to this podcast, you have to come check out my online course and community where we take all of this material and we apply it. You'll learn life changing strategies to get your child or clients to reach their fullest potential. Join me for a free online workshop at MaryBarbera.com/workshop, where you can learn how to avoid common mistakes. You can see videos of me working with kids with and without autism, and you can learn more about joining my online course and community at a very special discount. Once again, go to MaryBarbera.com/workshop for all the details. I hope to see you there.
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