Navigating Adulthood: Parenting Beyond Diagnosis

Today's guest is Jessica VanHart.  Her son wasn't diagnosed until he was 11 years old and she talks about what the early years looked like as well as life now that he is 25.

She shares about an amazing program, called Family Initiative  her that focuses on each individual child as well as the family.  This program is in place so that every child and every family has a chance to thrive.
Check out Family Initiative at https://www.fi-florida.org/

Are you someone who loves someone on the spectrum? You can find 5 key strategies for parents of kids on the autism spectrum at https://www.championsofautism.com/5-strategies

We would love to have you as a member of The Champions of Autism Community. This is a community for anyone who loves someone on the spectrum. Our stories are different, yet familiar.
https://www.championsofautism.com/community

Are you someone who loves someone on the spectrum? You can find 5 key strategies for parents of kids on the autism spectrum at https://www.championsofautism.com/5-strategies

We would love to have you as a member of The Champions of Autism Community. This is a community for anyone who loves someone on the spectrum. Our stories are different, yet familiar.
https://www.championsofautism.com/community

Transcript

hey everyone. Welcome back to the Champions of Autism podcast. We are Joe and Stacy Bako, and we are super excited today because today we get to talk to a dear friend of ours and she is gonna share her story about her journey with autism, as well as what she's been doing lately to make an impact in the autism community.

So, Jessica Van Hart, welcome. How are you today? I am good. Thank you for having me. Really good. So Jessica and I have, and you're gonna have to help me here, Jess. We've known each other. For like 20 years. Right? A Yes. At least how that's possible. Cause we're so young still. We're just in our like what, late twenties, but I think about that.

Yeah. Yeah. But I was trying to like, think about when we first met, it was when our kids were  at the sitter's house. Mm-hmm. And I was trying to really think back about like, I know you and I connected because your son is on the spectrum and our son Jack is on the spectrum. But I was trying to think like, was it before then?

Was it with Peyton and Joey? Yeah, so we actually did meet before you had Jack. Ok, that's what I thought. Yeah, because I remember you being pregnant and Kind of, I still was in the, not really sure exactly what was going on with Colby's stage. But I think it was through the sitter that we had met with the kids all in the same daycare setting.

And I don't know, we just, I guess we hit it off. Wait, we must have, cuz I was trying to think back. I'm like, she's, we've just kind of always been friends, it seems so.  So  we've developed a closer friendship kind of through the boys in, in our journeys kind of together. So just tell us a little bit about Colby and his diagnosis, if you would.

So Colby is my third child, and so I quickly started noticing some differences in his development from the other two that are older. Started asking questions, you know, to the pediatrician and everyone because he really wasn't talking. Kind of got brushed off a little and told me he was, everybody was kind of catering to Colby, but so he would talk when he felt like it.

But then I started to notice different behaviors that just didn't really fall in line with other behaviors of other kids or even his siblings. And so I started searching. But back then he was born in 97, so. People really, autism wasn't as prevalent and people really didn't know about it. And I, I have to say that I don't even think doctors really knew much about it or had a diagnosis or what typical signs would be to even start to explore that.

So I. Time went on and I started searching some more for some answers and saw several doctors who diagnosed him with all kinds of different things and nothing really fit. So as Colby went into school and went through therapy and everything I just kept thinking all these different things, a D H D, and all these other diagnosis that he had just really didn't fit.

So then I started doing a little research and searching out some other doctors and started leaning towards, maybe it was autism, but I myself didn't know much about it. So, fast tracking into school, Colby was actually. 11 before he really got diagnosed with autism. Okay. I don't think I ever knew that. Yep.

So I tried a lot of traditional medications and things for behaviors and a lot of therapy and things never really seem to work really well. Every medication had a side effect, which as a mom was quite upsetting. So my friend Stacy and I decided to look outside the box because we wanted to help our boys have a more prosperous life and just see if we couldn't, you know, find some help with some of their behaviors and different health issues that they were both having and.

We just kind of got to work and found a doctor in Miami Beach who has made the life changing for Colby. And I know that was life changing for you and Jack too. I feel like owe him a lot cause Colby has come so far since then. And he's verbal now, where before he really was considered non-verbal for a lot of years.

His, a lot of his health issues have basically disappeared. A lot of behaviors have disappeared. He's more social and outgoing. He's made a lot of games. It's, it's been a lot of work, but it's definitely been worth it. Yeah. Jessica, quick question for you. I mean, share with us the big, what you feel, the big difference of the doctors that you were seeing versus the doctors that, that doctor that made a difference.

So, I feel like in the medical world when I was seeing them, they were kind of treating Colby like everyone else, so, I think they treated Colby in a category instead of Dr. Levinson that I see in Miami Beach treated Colby for Colby. He took as much time as it needed to listen to what I had to say.

He did the research from day. Colby was born all the way through n never made a diagnosis or never handed out a medication without really doing all the tests to figure out. How Colby worked. And then when I say how Colby works, I mean like blood work, urine anything like that. Like exam, talking to me, asking me about different behaviors, asking questions that I never would've thought were relevant.

I feel like the medical industry has more like, 15 minutes for you and your diagnosis is the same as everybody else. So you're all in one category and you're written a prescription and do a follow up and hope it works. So as a mom when something's wrong with your child, whether it be Colby or one of my other kids, I want answers.

I want an answer that's not gonna come along with a bad side effect that I'm gonna have to deal with. Later, like a medication that might help, this is gonna cause another problem. I just feel like the work to find somebody who listened to me, who does things a little bit outside the box, who treats the kids a little more naturally is the best option for me.

And I wish it was available for all parents to see the difference it makes. Colby has made the most gains and is just a healthy, happy, thriving young adult now, and I firmly believe it's because we decided to think outside the box. Yeah. Yeah. What you said, I, I know that's how this, how I've explained it to other people is when Jack was treated by Dr.

Levinson and then we've since found a new a physician similar to him up here in Tennessee is Yeah. They look at, they looked at Jack as an individual and looked at what he might have had too much of in his system, what he didn't have enough of, you know, looked at all of the things instead of trying to just put a bandaid.

On it. And that was very beneficial for Jack as well. Not, not putting him in a box. And I mean, I remember us, you know, when we would, we'd get in the car and we'd haul across the state, you know, and spend the entire day over there doing tests and. There were tears and there was laughter and there was questions, but I always felt like I was listened to two that I was heard, whereas I've shared before that there was other offices that I was in where any time I started asking any questions, I was shut down and I was kicked out of, I think two of them.

I think I was asked not to come back cause yeah. Questions so, I, I've been asked not to come back, call, so several times might have been told I was a little bit crazy. Yeah, I, my, my parenting was questioned and I was told I should not compare him to his siblings when they're comparing him to the nation's average, like, how does that make any sense?

That I wouldn't compare him to his biological siblings? Right. For, for our listeners, if they are interested in finding a doctor, like a doctor that helped Kobe and a doctor that helped Jack, what would, what would you advise our listeners on where to start looking? I. So I guess back in the day they used to be called Dan Doctors, but I don't think that that's necessarily what you call 'em now.

But I think what I would do if I had to start over is look for somebody that treats non-conventional, holistically or a natural path or one of those that maybe Listens and like my biggest advice when you go to find a doctor for your child is you want somebody who's gonna. Take the time to listen to you, and it doesn't matter if that's only for 15 minutes or it's an hour, like they need to give you the amount of time you need to talk about your child and come up with a plan.

So I think that's probably one of the most important things to me, is that somebody listened to what I have to say. I am the mother. I'm the one who's raising him. I know how he feels. I know his behaviors. I know what he eats. I know what he does all day. And for someone to help you with your child, those are the things that they need to know.

And the only person who can tell them that is the parents. Yeah, for sure. That's, that's a good word. And you had it's interesting. I did not realize that. Colby was 11 years old before he got a formal diagnosis.  I'm sure you've seen a new study has recently come out that the numbers now for autism is one in 36.

Mm-hmm. And that's over a 400% increase from the year 2000. So right in between when Colby was born and when Jack was born. It's over a 400, I think it was like 417%. Yeah. So now it's, everybody knows somebody on the spectrum, but  you touched on it when, in the early years for you, you and Colby, you know, the doctors didn't really know what was going on.

What, and school probably certainly didn't know what was going on. Was he able to get any therapies or anything in school before he had a diagnosis? Cuz a, a lot of those are like, well, We can't do this or that yet. Right. So school was hard to navigate because Colby technically never had an autism diagnosis in school.

But he had a lot of other diagnosis at school since he was non-verbal when he started school. So he had a speech and language delay. And then of course because of speech and language delay, his. IQ tests that they did were on the low side because he couldn't communicate, which was a lot of it. So I did get some therapies.

Not everything that he probably should have had. They focused more on speech since he didn't have a lot of speech and language. I, and then of course, the school district tells you they have an autism specialist, which I butted heads with a little bit because. They are only really trained through the school to look for certain typical signs.

And they're, I, I mean, to me, they're not a doctor and they're not a psychologist who does this. Some changes may have been made since the, you know, back when Colby was there, but Colby had made a lot of gains and I had been seeing Dr. Levinson for a while before the school actually so-called, tested him for autism.

So Colby actually never had a really official diagnosis of autism on his paperwork at school. Okay. Wow. Wow. So, and you touched on this a little bit too. , you've had to be his biggest advocate with the physicians and with the schools. , can you think of any other, like, settings where you've had to advocate for him?

I would say honestly my biggest struggle was the doctors early on, and then school, school was a huge, huge challenge and That's probably where I had to exhaust a lot of energy to get Colby what Colby needed. And it's unfortunate cuz I feel like the schools are there to teach our children and to support parents in the kids' education.

So it's unfortunate that I feel any child with needs doesn't get what they need. I don't think it's just autism. I think a lot of kids do. I think the unfortunate thing there too is that parents don't realize that they can have a voice and they can fight for other things. They don't have to take what they're offered.

So I, I would say my biggest challenge was school. Yeah. And I remember. Just, you know, and doing life with you and stuff. There was lots of times where you would have meetings with the school that would go on for a couple of days because they're, they couldn't get, there, couldn't, a resolution couldn't be reached because you're like, this is what my son needs.

We need to figure out a way to make this happen. And I, I remember it was never like you going in there wanting to like attack anybody, so to speak, but you were just like, this is what my son needs. And, and I'm gonna fight to get what my son needs. So I that, that's something that I think parents will shy away from easily because they don't wanna hurt anybody's feelings or they feel like they don't know exactly what.

And I feel bad because I do feel like a lot of parents do want what's best for their kids, but they don't know that they can actually fight for that. They feel like when they go to meetings at the school that there has to be an ending, and when the school doesn't budge, then they feel they don't have a reason to push them any further, and that's so not true.

You need to stand up and fight for your kids and advocate for what your child deserves. The schools have the resources to provide it, and they're supposed to provide it. Yeah, that's, let's stay right here on this topic for just a second. I think this is well worth peeling back a few more layers on when it comes to advocating for our children in the school setting.

All right. That being said, Jessica, what areas do you believe get. Parents either shy away from or overlook when it comes to advocating for their kids in the school setting? I think it comes to like the therapy part of it, because I think a lot of parents feel like, even though there are kids, I feel like maybe and, and I'm, I was like this when I first started, I didn't know everything.

I didn't know really what to ask for or how much time to ask. For, or which therapists were most important? So I think parents sometimes feel like they don't dare ask or they don't dare go against what the school's recommending because they feel like they don't know. They feel like the school knows better.

But that's not always true. I think in your gut, you know what your child needs and if you're not happy with what they're offering, you need to say you're not happy. You know, the school can provide more. They certainly have the funds to do it. They just, I think. You know, I know everyone is short staffed.

It's everywhere. But you know what? Your child deserves it. So I think it, you know, you need to stand up. If something doesn't feel right or you're uncomfortable with something don't feel like you can't ask. Don't feel like you can't push for that because you can. It's your child. You are supposed to have a voice in their education or therapy.

And parents, they don't need to wait to an I E P meeting to advocate. No. Nope. If they feel like something's not right or their child needs more, or something needs to be changed on an I E P, you can call a meeting at any time, and I would always recommend just from past mistakes that you put everything in writing.

Emails are wonderful tracking because districts usually keep track of emails that come in and out of the schools. So if parents have conversations about, you know, their children's IEPs or educations put, putting it in an email keeps track so nobody can say they didn't get it or any, there was any misunderstandings.

We all have it here in writing and we can all see what. We're supposed to do. That is a good, good piece of advice because so many people, and, and I'm guilty of this, not necessarily with the school, but texting cuz it's so much easier. But you're right, that's a good piece of advice to put it in email so that so that there's a paper trail so you can cia, right?

That's right, that's right. Now some of, some of our listeners, Jessica, may not. Be as bold as you or as bold as Stacy to step in and want it or, or feel confident enough to advocate for the child on the level that they really need to. Is there any advice you have for parents who are a little shy on the advocation part?

So if your child is in therapy outside of school, some of those therapists are more than willing to help you with some of that. You can always ask them if you feel more comfortable with an outside therapist or, I mean, when, in the beginning when I wasn't a hundred percent, you know, really what avenue to take.

With Colby, I did hire an advocate and some of 'em will do stuff pro bono. Some of 'em are very reasonable, some are not. But you need to find one that you're comfortable with that. Has the same vision for your child as you, but an advocate can help greatly if you feel you need just somebody you know, a little bit of a boost of confidence or even someone to fight with you.

They are really good at navigating the school system. Fantastic. Now. As our kids get older and they graduate from school, that form of advocacy is in the rear view mirror. But advocacy never stops with our kids. Right. So our Jack  is about to turn 17, and I know Colby's 19. I know. Can you believe?

No. Colby is 25. 25. I know, it's, I thought they were closer together. No, we've been gone for nine years. Ok. So this is, yeah, this is great. I'm really glad you're blazing the trail ahead of us. So we got, what are some things that we should be aware of for Jack, any of our listeners, for that matter,, as their children transition out of high school into the real world?

What, what should. We know. So I always thought each time I transitioned from elementary to middle to high school that those years were hard. But I will say them transitioning and graduating from high school is very, very difficult out into the real world because what do you do? I. Every parent's, like, where does my child go from here?

What do I do? They don't have a day program to go to anymore or school to go to anymore. And you know, some kids will come out and they will go on the track of, you know, work into the workforce. And some kids can't really handle a full-time job or workforce in a busy place. So that's really hard. I am fortunate that there is a day program for adults here and that I work with also and sit on the Board of Family Initiative, which is really doing some great things in our area.

But I guess what I would say to parents is to try to look for something you know, what suits your child. I don't know, sometimes VR. Offers kids if you, I don't, is VR in your area where they can go after school and sometimes get help with finding jobs and then get job coaching? Yeah, they have I can't remember what it's called here.

I think it's a three letter acronym. There's a couple of things, kind of like a, a work study, not work study, but kind of like a work program where they start it in high school and then it can transition to after high school. Yeah. So I think like each state probably does it a little bit different. Here we do have vr, it, it's not for every child.

But I don't know, adulthood is like a whole new set of like issues. Hey there, meet Joe, special guest appearance. But I don't know. I that's like, this is a hard one. Cuz this is what a lot of my friends here and, and I talk about and what we're working on right now. We are fortunate that. We are starting a program through Family Initiative to start pairing up with business owners and we will train the kids along with the business owner to take positions.

Like we just started something with the Lee County Clerk's Office and we have two young adults working in the clerk's office now and they're doing amazing. That's fantastic. I definitely wanna come back to Family Initiative in just a minute cause I love what you guys are doing. What about like that right before, I guess it's for most kids it's right before they leave high school, when they turn 18.

Did you guys choose, if you don't mind me asking, did you guys choose conservatorship guardianship? What did you guys choose? So right now I am just Colby's basic p o a like I am. I didn't have not gone through guardianship. I've talked to a lot of friends and I talk to the lawyer that we use right now and right now that suits us.

I have friends that have done different things, so some of them have done the full guardianship. Some have done what I've done and basically are, you know, the p o a and have medical paperwork to go ahead and make those decisions and this and that. I've struggled with that a little bit. I know that I probably am going to have to do the full guardianship.

It's just, it's quite a process and I don't. I can't really say 100% why I haven't done it yet. Yeah, some of it's probably a little bit emotional and. Right now everything's kind of going smooth. I, I guess I have like a little false sense of security because everybody that Colby tends to deal with right now is knows me and I'm in my comfort zone of not having to deal with anybody outside of my circle too much.

So the P POA works? Yeah. So I'm probably prolonging it, but I'm probably going to have to end up doing guardianship. Yeah, cuz we, Jack will be like Joe said, he'll be 17 on Tuesday. Mm-hmm. , I didn't even know that par of attorney was an option. But that's definitely, in fact, I just asked a friend of mine today, I'm like, she's an attorney, but she doesn't do anything with special needs or anything.

So I'm like, Hey, I need some names. I need to start like interviewing people just to. See who's gonna be able to answer my questions and not kick my hands. I know I, it did take me a little bit to find an attorney that I really liked that. Did this, like you can find attorneys that do guardianships, which is mostly for like, unfortunately the elderly.

But I found one that actually does it for, for kids. Kids like Colby. And a couple of my friends use the same attorney because the other thing that people have to think about is which is unfortunate and it's nothing any of us like to talk about, but what's gonna happen when we're gone? So, you know, setting up a trust and for the kids, but it ha needs to be a special needs trust for our children because there's, you know, certain criteria that will help them along the way.

And we wanna make sure that when we're gone, everything it's taken care of for them and that somebody does, is able to take care of them and their finances and make sure that, you know, everything is okay. Yeah. So my advice would be to find somebody that doesn't just do guardianship, because you want somebody that does guardianship for children with needs.

Yeah. Special needs. Yep. For sure. So backing up just a little bit, so Colby's an adult now and I haven't seen Colby in a couple of years, but what, what's life look like for him every day? What, what's he doing now that school is done and. So he actually, I, we still call it school, it's really a day program, Uhhuh, but he goes to Special pops here in Cape Coral.

It's a program, a day program for adults. They have a couple different things. They can go out into the workforce if they want to, where they can do workforce things on site, or they can be in regular classrooms and work on life skills. So Colby, Monday through Friday goes to a day program with his friends.

A couple of his good friends that he went through high school with attend also, and then some other kids from the same high school and some of the same programs are there. So he really kind of transitioned with a lot of people he already knew, which made it nice. He also attended when he was in high school, an afterschool program there.

So he was comfortable and already knew them. Yeah. So that, that's what he does Monday through Friday. And then he also goes to some social classes or hangout group we call it at Family Initiative in the evening, which he gets to go with a lot of friends and they do some things on site and then they do go out into the community and do fun things.

Just like any typical teenager, young adult. They hang out, they socialize, they go play golf, or they go bowling or go to the movies and they do different activities like that. I love that. Now, is this something, obviously there's, there's instructors or teachers there Yeah. But are there like buddies there as well that  work with them or go on and stuff?

So the family Initiative has all of their everyone there is either an R B T or an ABA certified employee. So they are the ones that work with the kids. The kids don't. Get it that they actually are learning as they go. Great. But that's how that is run. And then the ones that are during his day program are a little bit different.

They're not necessarily that, but they are all city actually employees, cuz that's a city program. And some are teach, have teaching backgrounds, some have special needs background. But yeah, I would say like. They all are amazing. I've been really happy with obviously both programs. And I like it that I can come and go as I please there at both places.

They know me really well. It there they both have open door policies, which I would never drop Colby off somewhere unless they did. Mm-hmm. Yeah, for sure. For sure. So while we're, we'll come back to that part there in a minute. Sure. But while we're talking about that, so Family initiative is something that is the program that Colby's involved in, but something near and mm-hmm.

Near your heart. Mm-hmm. Tell us a little bit about that, because I know it's, it's something that's right in Cape Coral. It's not a nationwide thing. So I wanna talk a little bit about what it is and maybe how something like that might be able to be implemented in other places if people wanted to start something like that.

So Family Initiative was formed by three. They have three founders David Brown, Anjali Vank, and Eileen Webster. Eileen is more the financial person. Dave and Angelie More Run Family Initiative. Anjali is an ABA master. She is amazing. She's developed actually her own way of doing aba, which She is amazing with the kids and trains all the RB Ts that work under her, and they both came out of foster care, which is kind of interesting.

They actually do not have family members on the spectrum. They just did this because they saw a need. So Family Initiative has an autism center here in Cape Coral. They also have a site in Fort Myers and they do a lot of programs with kids starting at infancy that may be at high risk. They also do diagnose.

Kids at young, young kids. And then they have various programs between the two sites. They also are, take care of kids in foster care. So they do this around the state. Oh, okay. Yep. They're contracted to come into different counties to help train foster parents that might be fostering a child that has needs, and they're not really sure what the needs are because, you know, lots of times parents that take on foster kids, you, you don't get a manual.

You're not really sure where they come from, but you notice things are a little different. So they also have do a lot of trainings for kids to hopefully keep them in placement and keep 'em with a good family and help them support the family. The work they do here is a lot in the autism realm, and they also work with the kids as far as therapy goes and classes, social classes, but they also support the family.

So they have sibling classes and they have parent classes and parent groups, and they just. They support the parents. Like if you need something, you can call them and they're going to respond. Yeah. They also do in-home, they go to the schools. They have an advocate that is there to go to the schools to help navigate the schools with parents.

We also send our BTS into the schools to help with therapy for the kids. Wow. So, yeah, and we are working right now on building a private high school for children on the spectrum. Wow, that's amazing. Has it, have y'all broken ground on that or just in the planning stages? We are actually between two sites right now.

Okay. So, and we've put in an appropriation bill in the. Legislature up there. We're waiting to see what the governor has to say about it. Yeah. So we're hoping, fingers crossed that it goes through, because if so, they have already launched a pilot program for the high school and they've had 10 students this year, which we will be ending in another.

10 days or so been very successful and all the kids have really made huge gains. And then I told you they are training kids for workforce. So yeah, it's all inclusive. I mean, if it starts from mm-hmm. First one, I mean this is like, like a utopia of special needs. Needs. I mean, this wasn't, you know, as long as I've known you, this is something that you have talked about that you were like, I want a whole city.

I want their needs to be able to be met on all different levels while functioning in the real world. Yep. But with the, the need by meeting, but meeting their needs. You know, we were talking last night about how, you know, everything's autism awareness. Autism awareness. Well, it's, it's beyond that. Now. We're all aware of autism.

It's about, The autism acceptance and what are we gonna do about it? What are, so that, that's funny you say that because Family Initiative launched a campaign for this past year and it is all about acceptance. We're we're way beyond awareness. Yeah. Now it is all about accepting our kids and realizing that they have a lot to offer.

Mm-hmm. And that is one thing that they are really, really pushing and doing. And that's what forming relationships with business owners and getting our kids, you know, jobs in the real world. Yeah. And getting business owners that are willing to. Give our kids a chance. Mm-hmm. Is huge. Yeah. Yeah. Because they really have a lot.

Yeah. Our kids have a lot to offer. Yeah, they do. Yeah, they do. And for so long, People and, and I guess, you know, there's been times throughout just trying to figure Jack out, I've been guilty of this too, but just kind of being like, well, I think this is as good as it's gonna get, you know? Mm-hmm. And then they, I think we underestimate, yeah.

And then they do something that surprises and we're like, huh, no idea you knew how to do that or what that meant, you know? So I think that's an excellent reminder that. That we, we shouldn't just settle with wherever they're at, whatever their skills are. If it's a parent who's, you know, Jack wasn't potty trained until he was like six, I think, you know, and, and all of a sudden it just clicked.

And Jack was non-verbal until like two, three years old and, you know, say, like you said with Colby too. Yep. He was, he was non-verbal for a long time and. Only people close to him could understand what he was trying to communicate. And now he's able to communicate for himself and that's, that goes back to you and you advocating for your son and, and not giving up and not settling.

And I think that is so powerful and speaks volumes about the kind of mom that you are. Thank you. Mm-hmm. Both of you ladies are, are of the same clock when it comes to the time. I dunno. I really I know that we all go through a whole bunch of emotions when something just a little, you know, not typical with our kids.

And, you know, and a lots of times, way back when I'd say, why, why, why? But to be honest, I feel so blessed. That I have Colby, I feel like I was meant to have Colby because it changed me and it changed me, I think for the better. And I just think about it today, that. You know, I, I wouldn't be doing what I'm doing if I didn't have Colby.

Like I wouldn't know that much about it. I wouldn't be out there fighting, you know, to help all kids with autism if I didn't have him. So I feel like he was a huge blessing, not just to me, but to really like, tell me this is what I'm meant to do. Like, show me what I'm supposed to do. God gave me him so I can help other people.

Yeah. Yeah, for sure. And there's probably been many times throughout our journeys that we did not see the purpose or the reason, and we were just trying to keep our heads, not even our heads. We were, we were like floating and the water was right up from here. We're just trying to survive and mm-hmm.

And I think that can bring a lot of hope to people who are right at the beginning or right in the thick of things because where you're at right now, it doesn't mean it's where you're going to stay. Right? So that being said, it, if Jeff, if you were sitting down having a lunch with, with someone who's just received the notice that they got a diagnosis for their child, what would you say to them?

What advice would you give them? I think first I'd say that. I understand how heartbroken someone is and how lonely you probably feel because I've been there. You feel like your hopes and dreams for that child are now gone, but. I now would say, I don't think they're gone. I think that we just have to think about it differently.

We have, you may you have different hopes or different dreams. Yeah. And that just because your child got diagnosed with autism doesn't mean that they are not going to be successful. It doesn't mean that they're not smart. It doesn't mean that they can't be independent because they can. It just means that their life is going to look a little bit different.

Than somebody else's or maybe even their siblings. But I have five kids and all five of my kids' lives look a little different, and they all grew up in the same house. So I know it's hard. But if you just push for what your child needs, they will make the games and they will become the adults they're supposed to be.

And they have something to offer. They all do. And it may be something different. And we all offer something different. I mean, I offer a different perspective on different things and I offer, you know, and I do different jobs than everybody else, and they will too. Mm-hmm. But it will be okay. I don't, it's, it is hard, but I would probably, my best advice would be to find other people that can help support you that have been there.

Because I feel like parents can support each other in this journey and help each other along the way. Like that probably to me is one of the most important things that I think I've had is us just chance meeting and being able to find somebody to help our kids. Like I feel like if we had not met and talked about doing something different for our kids, would we have done it the same?

I don't know. The moms that I have here now that we are navigating adulthood together, like we say it all the time, we can sit down and we can say things to each other that we probably would not say to somebody else. Yeah. But I would say to try to find other parents like you, that you guys can support each other through the journey is one of the most important things, and know that it will be okay and that, you know, you just have to fight for what your child needs.

Yeah. And that's exactly why we are doing what we are doing with champions of autism is because there's an you, you do feel alone. You feel isolated. Mm-hmm. You dunno where to turn the people that you used to maybe turn to, you know, family and friends. Never don't understand. Yeah. They, they never abandoned us when all this was going on, but they didn't understand, like you and I so blessed to have you when I was in the thick of everything.

And, and I think even, even a difference between being a mom and the dad, not that mm-hmm. Not that Joe wasn't involved in, he certainly was as involved as he could be and, and, and cared of course. But I think it's just different for a mom and a dad. But that's exactly what we wanna do with champions of autism is to provide a place to give information and why we're doing the podcasts and why we're doing our community is to do that for parents, to give them a place because a lot of people don't have that, you know?

No, I love what you guys are doing in Cape Coral with Family Family Initiative and I would love to see something like that all over. I know there's different programs in different areas. But I definitely would love to see that in more, more and more places because our, our kids can make a big impact.

Mm-hmm. So I would love to see schools realize, you know, I, I, and I don't anybody think that I am completely negative against the schools cuz all of my children went to public school. I just think that they are not always suited and trained enough for our children. So, I wish that we could make some changes there.

And this is why we are doing a private school. It's not to bash the, the public school Right. But I just feel like The ones that will run this school are better suited to for our kids. I don't know. I, you know, public schools, obviously. We, we all, most of us went to public school and we all turned out great.

Right. But our kids meet a little more. Mm-hmm. Yeah. Things are changing. For sure, for sure. Well, we are going to wrap up this part of our conversation. Don't go anywhere, but Jess, we are so thankful for you coming on here. It was so great to talk to you today and, and to just hear about all of this. I mean, there's you like, as we've known each other for 20 years and there's stuff that I didn't realize.

But we are so thankful for you sharing our story. So sharing your story, sorry, with with Colby and with Family Initiative. But is there a way that people, if people wanted to find out more about Family Initiative, if they are local where they could go to? So they have of course a website.

They have Facebook, they're on most social media. But. Family. I don't know if you can see, where's my little camera here? Where am I at? Do do, oh, there we're, ok. So yep. Fi florida.org. Okay. And I'll put all this in the show notes as well. So, but for right now, for anyone who's listening, if you go to fi org, that'll get you to the Family Initiative site.

And you can also find on Facebook. On Facebook. Yep. Awesome. Super. Well, this was a great chat together, no doubt about it. Jessica, it's so good to see you again, and I wanna thank everybody for joining us on this episode of Champions of Autism. If you'd like to hear more about the topics like this and the champions of Autism community, visit our website at www.championsofautism.com, and you can also find us on Facebook at Champions of Autism.

All right, so reminder, To be sure to subscribe, rate and review on your favorite podcast app. And until next time, we are Joe and Stacy Viko. And this is Champions of Autism. Woo.