If it’s a need and it doesn’t exist, Jess Ronne is probably figuring out a way to make it happen. The blogger, Jess Plus the Mess, joins me today to talk about her books, nonprofit, advocacy journey, and her latest project, the Unseen documentary.
Jess is a mother of 8 and her 16-year-old son Lucas deals with severe special needs as well as a new diagnosis of autism. Jess shares her unique story from her pregnancy with Lucas, his birth, her late husband’s battle with cancer, and her life now as a blended family with her husband Ryan. Her story is beautifully captured in her two books, Sunlight Burning at Midnight and Blended with Grit and Grace, both available on Amazon.
The Lucas Project
Jess knew from the moment Lucas was born she would create a nonprofit in his honor, the mission behind it wasn’t always planned. As Jess’s life transformed as a caregiver to a son who will need 24/7 care for the rest of his life, and when her husband’s health began to suffer as a result of stress and burnout, she knew caregivers needed more support. Support and resources for caregivers and siblings of special needs families are severely lacking. While through COVID the nonprofit has had to shift and adjust, the main goal for The Lucas Project is to provide respite and support to caregivers. Jess’s organization sends care packages to caregivers all over, respite surprises to mothers in NICU, and even grants for others to launch caregiver respite support in other communities.
The Unseen Documentary
Available to stream this May is a documentary produced by Jess that follows her family to spread awareness on the unique struggles of a family caring for a child with severe special needs. The documentary not only follows her family over three years but interviews and includes at least 20 other families and caregivers. Our society and support systems are failing these important members of our community, and it’s Jess’s mission to shed light and create change.
Caring for Caregivers
Even if it was decades ago, I remember friends who reached out and brought a meal or came over for support care. How are you supporting caregivers in your community? How are you educating your friends to support caregivers and their families? Jess and I go over some great suggestions on how to approach offering support that maybe you can take yourself, or offer up to your friends as ideas. The important thing is to not ask “how you can help” but instead offer help in the exact way you know you can, whether that’s bringing a meal, picking up siblings, mowing the lawn, or even dropping by a gift card for take out.
There is some great advice in this podcast, as well as some important topics such as handling life as a caregiver for severe special needs children, relocating for resources, and making the decision for residential care. Be sure to check out her books, as well as check the link for information on streaming, Unseen: Caregiver Documentary Film. You can find Jess on social media as Jess Plus the Mess as well as online or by checking out her website for her nonprofit, The Lucas Project.
Jess Ronne on the Turn Autism Around Podcast
Jess Ronne is an author, speaker, podcast host, documentary producer, and caregiver advocate. She is founder and executive director of The Lucas Project—a non-profit dedicated to providing recognition and respite for special needs families. She and her husband Ryan live in Michigan with their 8 children, including their son Lucas, who has profound special needs. Her story of beauty from ashes has been shared on The Today Show, Daily Mail and Huffington Post and is detailed in her memoir Sunlight Burning at Midnight. To follow the ongoing saga, she can be found at www.jessplusthemess.com or purchase her latest book, Blended with Grit and Grace.
- What resources and support are available for caregivers of special needs families?
- How can you support special needs families?
- Jess Ronne’s of Jess Plus the Mess, caregiver story.
- How to find and stream, Unseen, a caregiver documentary.
- How to know if residential care is right for your family.
- How to balance caregiving with special needs and typical siblings.
- How The Lucas Project supports special needs families.
- Sign up for a free workshop online for parents & professionals
- No More Time Out Mini Course
- Siblings of Autism: Interview with My Son Spencer Barbera
- Severe Autism: Interview with Amy Lutz
- Jill Escher: Why Has the Rate of Autism Increased?
- Autism Grandparents: How to Be Supportive
- Autism Living Facilities and Out of Home Placement | Interview with Lisa C
- Autism Action Month: Severe Autism Edition | Psychology Today
- The Lucas Project
- Sunlight Burning at Midnight
- Blended with Grit and Grace: Just Keep Livin’ When Life is Unexpected
- Unseen: Caregiver Documentary Film
Jess Ronne - Turn Autism Around Podcast Transcript
Transcript for Podcast Episode: 172
Jess Plus the Mess on Supporting Special Needs Caregivers
Hosted by: Dr. Mary Barbera
Guest: Jess Ronne
Mary: Mary: You're listening to the Turn Autism Around podcast, episode number one hundred and seventy two. Today we have a special guest, Jess Ronne, otherwise known for her blog and Facebook page called Jess Plus The Mess icon. She is an author, a speaker, podcast host, documentary producer, and we talk about her new documentary called Unseen, in this episode. And she mostly is a caregiver advocate. It's a really special interview. Jess and her husband, Ryan, live in Michigan with their eight children, including their son Lucas, who has profound special needs. She has been featured on the Today show and has two books, including her latest book Blended with Grit and Grace. Let's get to this really great interview with Jess Ronne.
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: OK. Jess, I am so excited to have you on the show today. We don't know each other very well, so I am on a ride with the listeners to get to know you better. So thanks for joining us today.
Jess: Yeah, thanks for having me, and I'm excited to get to know you better as well.
Mary: Yeah. So you have a podcast that I'm going to be on in a little while as well. So this is it's going to be aired on during autism awareness or acceptance months. But why don't you tell our listeners about your fall into the autism world?
Jess Ronne on the Turn Autism Around Podcast
Jess: Yeah, I'd love to. My story is a little bit different than the typical story. My second child, Lucas, had a stroke in utero in 2004. I went to what I thought was a routine ultrasound appointment, and it was there that we discovered the stroke and we were told to terminate the pregnancy. There was no hope. And my husband and I decided to continue with the pregnancy, put the baby in God's hands and just come what may. And Lucas was born August 12, 2004. They had to basically force him out. He was not going to let go. And you'll sort of see this tendency in his life, as I explained in detail about how Lucas ticks. But he came out screaming with life, and that was my induction into the world of special needs parenting. We didn't really have any other terms. It was just sort of this umbrella special needs. And honestly, I did most of my grieving in my pregnancy when they handed me a live baby two weeks later after he had been in NICU and said, Good luck. I was elated. I was going home with a child when I thought all along, my baby was going to die. So I didn't. I didn't grieve. I was thrilled. And we just went home and we settled into life.
Mary: What kind of problems did he have when he got out of the NICU you like? Did he have, like one sided weakness? Did he have problems swallowing?
Jess: Like, yes, swallowing nursing was very difficult. He ended up being dehydrated because we thought he was nursing, but he was not had to frantically rushed from the E.R. where they were like, Give this baby a bottle immediately. He's not sucking, low muscle tone. His head was the size of a two year old's at birth because of all the cerebral spinal fluid, so they had to cut me open from one side to the other just to even get him out so that there are a lot of delays due to his head size, you know, crawling. He was eventually crawling around one, I believe, but started dragging his head along as he would crawl and even putting him in a highchair. We had to put the boppy like around his head just to support him so that he could sit up and looking back now to like he was never interested in toys. Not very interested in people. But again, it was just sort of this special needs banner. And my story takes a turn, which also explains why we didn't get the diagnosis. My late husband had a brain tumor, and he fought brain cancer for three years. So as long as Lucas was healthy, we weren't going to all the numerous therapy appointments for Lucas. We were going to chemo and radiation to keep Lucas's dad alive, and that was about all that I could handle at that point. And then I had two more children as well. By the time Jason passed away in August 2010, I had four children, seven and under, including one with profound special needs. That's how I described it. Wow. So. You know, that's just, I think, how he sort of slipped under the radar for so long. Is it just, I mean, when you're living in trauma and trying to keep a parent alive, you're not focused on all the additional therapies and everything that your son might need. And like I said, as long as he stayed healthy, we were happy.
Mary: Yeah. So when did he get a diagnosis of autism?
Jess: Well, story continues. After Jason passed away, I met and married a widower with three young children. He moved to Michigan. He adopted Lucas and all of his siblings. I adopted his kids. And a year after living in Michigan, we decided to go stake out a life in rural Tennessee, middle of nowhere bought a big old house in need of total repair on 30 acres of land. And we were just going to go live the simple life. So we packed up our seven kids and went to this house. Ryan totally renovated the whole thing. We raised chickens and gardens and, you know, children and everything. But again, living out in rural Tennessee, we didn't even have those options for specialists. And Lucas was enrolled in the local rural school, which had one little special ed classroom with a couple of students and nobody said anything. He again, was just special needs, and I didn't even know people who had autism or who had autistic children like it just did not cross our radar. And then in two thousand eighteen, we moved towards Nashville to pursue better resources and support for Lucas. Because living out in rural Tennessee, there just wasn't anything, and we were recognizing that we needed something we couldn't be so isolated anymore. Lucas was going through puberty. The aggression, the behaviors were all intensifying. So we moved towards Nashville, and that's when his teacher just made sort of a sideways comment about his autistic tendencies. And I said, Lucas doesn't have autism. And she was like, Yeah, he does. And I said, No, he doesn't. I went home and googled it. I was like, Oh, Lord, Lucas is like, flaming. He is Right up there like every single thing that you could possibly check. Was was there. So we met with his neurologist. His neurologist gave us sort of an unofficial diagnosis of, yes, he does have autism. And then we got on the waiting list and actually got the diagnosis about a year later.
Mary: And by this point, he was a teenager.
Jess: Yeah, he was 16. So how old is he now? 17. So just last year, we we received the first official diagnosis, and we're in the process of looking at starting ABA and what that will entail. So we're considering that at this point.
Mary: Wow. So now you have eight kids. Yes, in total. So you added another child to the mix?
Jess: We did.
Mary: And so Lucas is the second oldest and none of your other children have autism or special needs or no, no.
Jess: We've had people comment on how interesting it was that his dad had a brain tumor. The people at Duke University wondered kind of about a connection there between Lucas having a stroke in utero and then his father having brain cancer, but nothing ever officially came of that.
Mary: Yeah, yeah. So how does that? Lucas' autism and severe, you know, delays and special needs. How does that affect your family of eight kids and you wrote about it in your you have two books. So your first book is called Sunlight Burning at midnight. Do you want to tell us a little bit about that and when that was published?
Jess: Yeah, that was published in. I got to get my ears straight here. I believe 2015. And that's the beginning of the story. That's me finding out that Lucas had a stroke in utero. And then it goes to my late husband's cancer journey and ends with me marrying Ryan and the adoption of all of our children. And then the next book, Blended with Grit and Grace, dives into basically that rural life in Tennessee and what that looked like with eight kids and living off the land, and autism's a big part of that book as well. And then our eventual move towards Nashville to seek more resources and support and the kids, the kids adore him, but it's just always been their life to have him as their brother. I say as a mom, I can't imagine doing Lucas without his siblings because they are so helpful and they're so eager to help teach him so many things. And the funny thing is about Lucas people have commented on. How he's the most adaptable autistic person they've ever met. And I think that's because he has so many siblings and we've moved so many times where he's just had to sort of figure out how to be adaptable. And he is he's extremely adaptable. Like it always shocks us how willing he is to even try something new or go to a new house or try a new bed. Or he's like, OK, I guess, I guess this is my new. That's a blessing, for sure.
Mary: Yeah. So we can link this in the show notes it's going to be podcast 172. So we're going to link both of Jess's books. And also you are the executive director of the Lucas Project, and it's a nonprofit. When did you start that and what's all that about?
The Lucas Project
Jess: I started that in Twenty Seventeen when my current husband Ryan began having panic attacks that resembled heart attacks was rushed to the ER a couple of times only to be told you're having panic attacks. And it was basically due to the isolation of our life, having no resources or support. Lucas was part of that equation, but I think the isolation and the other kids and just everything fell on us. And so I thought, if we're desperate for a break, other special needs families also have to be feeling this desperation for a break. And when Lucas was born, I promise to start a nonprofit in his name someday, but I always thought that that nonprofit would be serving the children until we went through this together. And as Ryan's health deteriorated, I began to have massive anxiety and PTSD thinking, Am I going to lose another husband? Living out here in the middle of nowhere with eight children? And so I knew that I needed to shift my focus a little bit and focus on the caregivers because honestly, a child is only as healthy as their caregiver. And if we didn't start to support these caregivers in some way, these children weren't going to be supported as well. So just on a whim, filled out all the paperwork, got a legal zoom like mailed it off. And amazingly, they like sent me back by my nonprofit status. I was like, All right, let's do it. Opened up a respite center at the local school where we offered once a month respite to special needs families that included the child with special needs and the siblings for five hours, completely free of cost. And we did that until we moved and then COVID struck, and we had to sort of revamp our mission and what respite was going to look like. So now we offer recognition and respite for special needs families. The recognition portion is the documentary and the podcast, and I'll get into that in a minute. And then we've had to sort of shift our respite focus. We now ship out care packages to special needs caregivers all over the country, just a little package of goodies that says, We see you, we acknowledge you. We know this is hard. Keep going, you know some encouragement. And then we bring gift bags to mamas in ICU with their children as well, just like a gift bag of respite books and spa items. And, you know, just little things to brighten their day. And then we offer respite grants to communities that want to start their own respite chapter where they are. So we try to help launch them off the ground so that they can offer that to the families within their community.
Mary: Neat, Neat. So where can we send listeners to learn more about the Lucas project or how to get grants for respite and those sorts of things? Do you have a website?
Jess: Yeah, TheLucasProject.org
Mary: The Lucas Project dot org. We're going to link all of this in the show notes here. OK, so your bio says you've been on the Today show like been featured in different things. You've also been blogging I. That's how I found you. I actually found you through Kate Swenson, who is on podcast 170 with her new book Forever Boy, which I am almost finished with. I'm on her launch team and it is just an amazing book, and I'm so excited to support that. So like, how did you get traction to get on the Today show? Was that through one of your books or through the Lucas project?
Jess: When I was pregnant with our eighth child, I wrapped up my master's degree and it took me like 10 or 11 years to finally get that master's degree. And the newspaper, the local newspaper in Grand Rapids picked up the story and it was big old pregnant me. I'm seven months pregnant with my eighth child, walking down the stage to get my diploma, and they picked up the story. And then the Today Show picked up the story from there, and that was kind of my big break. That's sort of what launched me into writing and advocating and, you know, doing all the things that I do.
Mary: Yeah, that's awesome. OK, so you go by Jess plus the mess as your social media. Is that also a web site or is that more of your social media handles?
Jess: Just plus the mess dot com Yeah, that's where I used to blog. That's right. You can find all things just list, as I say, you know, books have sort of taken over blogging and even social media posts have sort of edged out blogging a little bit, but I still occasionally will blog there, maybe once a month or so.
The Unseen Documentary
Mary: Yeah, yeah. OK, so let's talk about the documentary, because that's really what I think. I mean, it's coming out just in about a week after this airs on April 24th, it will be out. So the documentary is called Unseen. Can you tell our listeners and me about it?
Jess: Yeah. Basically, it started with a Facebook post in twenty eighteen. I was kind of racking my brain and considering the mission statement of the Lucas project, which is to bring awareness and recognition and just thought, how can we let society kind of have a peek into our lives because I do believe society wants to help, but they don't necessarily know how to help because we do live such isolated lives because this world often isn't made for families like ours. And just thought, you know, if we could somehow create a documentary and just peel back that curtain a little bit and show what a day in the life looks like with a child who will require total care for the rest of his life and just pitched it on Facebook, and a filmmaker and a producer from Nashville saw the post and reached out and the rest is history. They followed our family around for three years, and we created Unseen with a tagline of how we're failing parent caregivers and why it matters. And it's from a caregivers perspective. It was done extremely respectfully, maintaining the dignity of everybody involved. But it is the caregiver story and just showing what the day to day life looks like for a caregiver in this situation. And the end result is always to get more support to make the general population aware of what our lives look like. So even if you're just an individual and you're like, Hey, I know that family down the street, they have a special needs son or special needs daughter. It's to hopefully encourage them to say, Hey, I'd like to step in and help you in some way. Could we bring you a meal? Could I offer you some respite? Could I mow your lawn? You know, just recognizing that special needs families to do lists are never there, never finish like they. There's so much longer than the typical families to do list because we are also micromanaging all of those additional additional needs. So it's just bringing awareness to that. And I'm hoping, you know, individuals throughout society step in and fill in some of those gaps in some of those areas.
Mary: So the Unseen documentary, is it just highlighting your family or other families as well?
Jess: Primarily our family. But they interview about 20 additional caregivers as well. So they're portrayed throughout the documentary. But the the main story is our family, and it's kind of this storyline of continuously moving to search for this unicorn idea of resources and support. Now we're back in Michigan. We moved from Nashville last year. We're building an accessible home that we're moving into and two weeks, God willing, it's been a journey. And we landed on Michigan because that's where I'm from. We have friends and family here and kids go to school till they're twenty six here. It's the only state in the country, right? Yeah. And that's a huge.
Mary: All other states are Twenty one.
Jess: Yes, that's a huge perk. And year round school. So knowing like we have that in place until he's 26 and then I don't know, but at least you know, it buys us another 10 years.
Mary: Yeah. One thing I'm very interested in the in watching Unseen. I'm sure my listeners are as well. So how do people watch it or do they purchase it or where's it going to be?
Jess: We're going to stream it live from May 20th to May twenty six. And the best way to stay updated on all of that would be to subscribe to our newsletter at CaregiverDoc.com and then all of those opportunities will become available at some point in May.
Mary: Yeah, great. So we will link that in the show notes, and we will definitely be watching and I'll be watching. Maybe I'll even, you know, write about it or do another show about it. Two episodes I want to link in your show notes as well. Well, actually a few, I did an interview with my typically developing son Spencer on the role of the sibling and just some of that the nuances. I think that might be good for listeners. When you're talking about your siblings being so supportive to Lucas, you're Lucas, right? Because I have my Lucas and then to individuals that are leaders within the National Severe Autism Council or I probably have that wrong. Amy Lutz who did that, who is a great writer. She just published something today. Actually, at the time of this recording in Psychology Today, we can link that in the show notes. We can link her episode and one of the things she said in preparation for autism awareness or acceptance month. She likes to call it Autism Action Month, and she likes to remind people that, you know, the spectrum is very wide and that she wants to really highlight some of the needs of parents like you and I, who have kids that need lifelong 24-7 supervision, which is really tough. And one of the things in the article I'm not quite finished it yet is like, don't just say, is there anything I can do for you as a friend? But like, be specific, like and I'm running to get my child at soccer. Can I bring home one of your kids who's playing soccer? Can I take them to the new movie? You know, the siblings kind of need a break? Or can I bring you, you know, I'm making pot roast. Can I bring you a meal or? And I cut your lawn like you said or snow blow or whatever. Be specific in what you can do to support the caregiver and the siblings. And if you have the skills or the ability to also support your special needs child as well. So I thought those were like kind of good tips.
Jess: Yeah, definitely.
Mary: Yeah. Do you have any other? I remember, like when Lucas was diagnosed, when my Lucas was diagnosed. One of my friends asked another mom of an older child, like, what could she do for me? And. And she's like, just offered to make her meal. Like, just then. I remember that one of my other friends who was a nurse who had, you know, some training. She said, You know, could I come over like on the consultant day, the first consultant? Like, if there's a time frame when I could take Lucas so you could pay attention, you know, for a three hour block or whatever she's like, I want to, you know, be there for that. And it came, you know, any other kind of I mean, you spent your whole life on supporting caregivers mean anything else that people can do to support each other?
Jess: Yeah, a few thoughts. Just piggybacking off of that, I'll often say tacos or lasagna, like don't even like leave it, what's which one do you want me to bring? And just having been a caregiver, even for my late husband for three years, I find it so interesting how I literally did not make a meal for probably two years. My freezer was overflowing. Every single need that I could have possibly had outside of caring for him and my children was taken care of. On the flip side, I have a child who is supposed to die in utero. But he lived and he will require care for the rest of his life. Intense care. And you don't see that same action when there is a child who will require total care for the rest of his life, as I did with my late husband going through cancer treatments. I think we kind of need to flip that narrative a little bit because these parents who are raising these children for the rest of their lives also need to have that continued support offered through individuals, through churches, through nonprofits, through society. And I just remember, even when Jason was going through cancer, I had somebody cut hair and she said, Can I show up in your house and cut all of your kid's hair before they start a new school year? Just so I didn't have to leave? I mean, that was such a blessing. Another woman said, I want to take all of your kids shoe shopping before school starts. She took them all shoe shopping, dropped a couple hundred dollars on shoes, but just like, OK, thank you. Somebody else donated school supplies for all the kids, somebody weeded at our gardens. Just like time and time again, things would come up. And I think what I would just say to anybody is just offer whatever skill set you have. Maybe you're not comfortable sitting with the child with special needs because you're not familiar with what that looks like. That's OK. Offer whatever other skills that you have. If you're a maseusse of, you know, how to change oil on cars like anything that can just take one little thing off of our To-Do list is such a huge blessing for families like mine.
Mary: Yeah. And if you're not much of a cook, like, I don't cook like that. Yeah, you can get Uber Eats or gift card to a restaurant that the family can order out and can get a fruit basket or, you know, and those sorts of things. Like I vividly remember, I remember who made me food. I remember the offer to watch Lucas and that consulting. And it's like, that's over two decades ago, and I still remember those acts of kindness. We also have a a podcast interview with Grandma Diane. We have a lot of grandmothers in my autism online courses. And in that episode, we talk about what grandparents could do, what relatives can do. And even if you're a mom saying, Well, that's great, but I'm the one with the problem the caregiving needs and the financial needs. And you know, you might need to kind of plant the seed to your mother or father or sister or neighbors like to kind of plant the seed like it would really be helpful for me to get this kind of support. And you know, I know there's all kinds of families, even churches are, you know, you can find church volunteers who can, you know, if you have a child, say, with nursing or with OT and PT. And you know, a lot of those services will be there with your child, but you still need somebody there with them to be guardian. And I remember my father coming over, you know, four multiple times my parents would come over and to like, watch Spencer while Lucas was doing therapy or when I took Spencer or somewhere or whatever, and he had one point, he's like, It's like, you're on house arrest.
Jess: Pretty much right.
Mary: So I think, you know, I'm sure the documentary, Unseen, is going to be just great in terms of highlighting, you know, the trials and tribulations I know. Last night I read something you wrote called the theme was Tell me, don't hurt me. Mm hmm. Do you want to talk a little bit about that?
Older Children with Autism and Special Needs, The Effects on Caregivers
Jess: Yeah. Luke recently had a half day and half days throw his world into a tailspin. And I've even considered like, should we just not even send them to school on these half days? But then the other part of me is as a working mother, that's three or four hours that I can get some stuff done interrupted, so I do typically send him, but by the time he arrives home. He is just in a tailspin because his routine was disrupted. This happened a few days ago and there was just looping and pacing, and he could not get settled and just constant grabbing me and yanking me and dragging me and pulling my hair and scratching me. And I kept reiterating, Tell me, Use your words. Don't hurt, mom. And he would. He does have quite a few words. His preferred method of speaking is speech, and he's constantly adding to his vocabulary. But still, when he gets in that mind frame where his day has been interrupted and he's dysregulated and it's it takes hours till I get back to this place of peace. So pretty much everything I write isn't to like, shame him or, you know, try to reduce the dignity in his life or anything. It's to bring awareness to what we go through as caregivers, with the end result always being to obtain more resources and support for families like ours. And it all goes back constantly to this theme of the child is only as healthy as the caregiver. So we need to start focusing on these caregivers in these families. And sometimes it's just a few simple supports that we need so desperately. And the whole family unit operates in such a better manner if we can just get society to recognize us and provide the funding for it. We always shouldn't have to sit on wait lists for years and years, or we shouldn't have to reach a point of desperation before we get the help that we need either. I think if we would do a better job of implementing those simple supports, we wouldn't see the levels of desperation quite as frequently as we're seeing them.
Mary: Yeah. And as you said, like Michigan goes to 26 to school, I didn't know that, but it's like every state is different. Every county is different. Every school district is different. And I mean, literally, when Lucas was in school till twenty one, I literally had people like, hold their kids back to be in the same grade as Lucas to get better services like because I knew I would advocate, but it's like you couldn't move somewhere to where, you know, Lucas. Barbera was getting great, you know, education. He could be at the same functioning level, the same, you know what it's like. But then the teacher goes out on maternity leave, the school board changes. And it's just so in my first book, the verbal behavior approach I, I actually tell families, don't move unless you're moving. You have the move anyway, or you're moving because of other circumstances. Because if you're just like all, go to Michigan, you know where they have school till twenty six, that that could change.
Jess: Oh yeah, especially
Mary: If you have a ten year old like, don't bank anything,
Mary: The other episodes that we will link is Joel Asher, who is the president of the National Council for Severe Autism. I think I got that right this time. And she does an episode where, you know, the rate of autism. Now, instead of being where my Lucs was diagnosed, one in five hundred is now one in Forty four eight year olds have autism. And the quote unquote tsunami of of kids aging out of public school and the care requirements, and especially if they have any level of aggression. So it's really hard. Even if you have the funding, it's hard to get people. It's hard to get placements. You know, the placements for adults have been set up for kids with intellectual disabilities, kids with Down's syndrome. We did an episode on Down Syndrome recently. You know, like they're not set up for 200 pound Adults who are aggressive. Right. And that's for I know, you know, look at your Lucas. Lucas's is pretty tall and..
Jess: He's really skinny. But yeah, he'll be a big kid at some point. The one thing that kind of holds him back is the low muscle tone and the limited vision. So I think that almost like saves us in terms of some aggression because he can't see very well and he can't walk very well. So he we don't see the elopement issues or the aggression because he's not as confident in his physical abilities as maybe another child might be.
Mary: Mm hmm. Yeah, yeah. So I know at one point in your writing you were considering out of home. You know, going home or out of home placement, are you still considering that as a long term?
Jess: Yeah, yeah. Yes. We have our ideal location near our new house. That would be our if we could pick, it would absolutely be what we would go with. It's a residential community. It's absolutely beautiful on 40 acres and lots of purpose there. Day program animals, gardens, accessible playground, brand new homes. Absolutely beautiful. We'll see within the next five years we're going to have a plan or I'm going to create it. It is basically where we're going to land. But yeah, I would say we kind of have a five year plan and we'll just have to see, you know, where doors open and where that leads. But at some point, absolutely. I want to be Lucas's mom and not his full time caregiver. And I recognize as well that a yes to Lucas's care for the rest of his life is probably a no to other aspects of my life, including my other children, grandchildren, my marriage, and I just don't think that's fair for the rest of my family. But we'll I mean, we're we're not like shoving doors open. We'll take it step by step. And when we feel peace about it, that's when it will occur.
Mary: Yeah, I did do an episode with Lisa C. About her decision to place her, her son, who was around the same age as your Lucas in a residential placement we can link on the show notes it's it's heart wrenching to, you know, but at the same time, it's you only have one life too and your siblings only have one life. And there's a lot of thought about is it better to place them now while I'm able? Right? And can advocate and can be a part of transitioning him. And then, you know, depending on where you are and we have listeners from all over the world, we have people that have purchased my online courses from over 90 countries. So I mean, in other countries, it is very hard to get care and services of any sort. So, you know, I don't want to get too deep into, well, that covers that in it. I mean, what advice do you have for people in Idaho like? Like in terms of. It's a crapshoot what you could get or what you want for it.
Jess: I don't know, I don't think I'm very good with advice because if something doesn't exist, I just make it. So I'm like, if it's not there, I will knock down whatever doors I need to knock down to make it. But I think people need to start a worldwide speaking more honestly about some of these struggles, because if people don't know, you know, we're not going to get the help, we're not going to get the funding and and you don't have to hop on social media and pour out your sob story or whatever, but speak openly and honestly to the people in your life, to your friends, to people who love you, to the people at church who are like, How can we help you? Maybe start with a place like a church and say, Hey, we'd love to attend your church, but you don't have a special needs ministry. Could we maybe talk about getting this incorporated? Or I think as long as we stay holed up in our homes, isolated and fighting these battles on our own, we're never going to see change. And the more voices we can get to join this dialog, the louder our voices are going to become. And at some point, the policymakers aren't going to be able to ignore us anymore.
Mary: Yeah. Great advice and speaking of policymakers. Make an appointment and visit your legislators or visit your congressmen and your state senators and bring your child if approved. Bring a picture. Tell your story. Write emails. Write letters. Make an appointment. If you're willing and able to share your story like Jess is with her Unseen Documentary, I mean, that's going to also do a lot in terms of awareness that the spectrum is very wide. And, you know, if we just keep saying, you know, the doctors show, and atypical and the high end of the spectrum, which we definitely need to see, right? Well, we also need to see and understand that for 25 percent, 40 percent, I don't know even know, yeah, people are really struggling with what the needs of their more significant needy children, right? Whether it's autism, whether is autism and something else like in Jess's case, it doesn't matter. We need to support families. I think we're all we're both saying this. Yeah, yeah. And I like to also what you said about it, if it doesn't exist, you're going to have to create it. And I've always been a part of trying to create things that are out of the box because if you just go looking for what's available, it's probably not going to be a good fit, right?
Mary: All right. Well, I think we gave a lot of good advice for everyone out there in terms of, you know, really thinking about the role of the caregiver and how we can support caregivers more. But I always like to end the show. Wewill be linking all of this and we need to be watching the documentary Unsee starting in May, you said.
Jess: Yes, May 20th. So you'll purchase a link. We're not sure what that ticket price will be, but it will be low. And then you'll have from May 20th to May 26th to watch it. OK.
Mary: All right, great. So we will probably just link your website to get on the list and be following it. And then when once the documentary comes out and I see it and I'll be sharing on social media as well. Awesome. So before I let you go just hard on my podcast, goals in this whole episode is one big answer to this, but we'll hopefully have you sum it up. Part of my podcast goals are not to just help the kids, but help the parents and professionals listening reduce their stress and lead happier lives. So do you have any stress reduction strategies or self-care tips that you could recommend?
Self-Care from Jess Plus the Mess
Jess: Just tell you what I do every day. I recognize that I need to, like, literally shake off my stress every single day. So regardless of what the weather looks like here in Michigan and I can tell you, I've gone out in some pretty nasty weather. I take my two mile loop every single morning, no cell phone. Just shake it out. Get any of that out of me after Lucas gets on the bus and all the other kids get off to school. So the first thing I do often put my headphones in and just blare my music from my little shuffle from like two thousand.
Mary: A shuffle, I had a shuffle for years after they were a thing, but I haven't heard that forever. So you listen to your shuffle and then what do you do?
Jess: And just blare the same songs that I've been listening to for years. It's like my screen free zone, no cell phone, no nothing. And then my husband and I do try to go on a date once a week, and I know that maybe that works for us because we do have our older siblings who can watch Lucas for a couple of hours. There's still a ton of planning like we have to feed Lucas, bathe Lucas, put Lucas in his jammies, put him in his chair with his iPad, and then the kids can keep their eyeballs on him for two or three hours. And then we have to rush home to put Lucas to bed, you know, give him his meds. But at least it's a few hours where we can decompress and just be adults and catch up with our lives. And I don't know, it's something that we just both really look forward to.
Mary: Nice. Nice. All right, Jess, I really love this interview. Love getting to know you better. You are an amazing writer. I will continue to follow Jess Plus the Mess on Facebook, and I'm definitely going to be watching the Unseen documentary. So thank you so much for joining us.
Jess: Yeah, thanks for having me.
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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