← Tony Mantor: Why Not Me ?
Tony Mantor: Why Not Me ?
Belqui Ortez Millili: An Autism Mom's Strength and Journey to Advocacy
00:31:15
In this episode qw have an honest and heartfelt conversation about autism, family, and advocacy. She shares er sons' journey from initial diagnosis and the uncertainty that followed to the strength and clarity that grew over time.
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- [00:01]
Belki Ortiz Melilli
Lifelock. How can I help? The IRS said I filed my return, but I haven't.
- [00:05]
LifeLock Representative
One in four taxpaying Americans has paid the price of identity fraud.
- [00:08]
Belki Ortiz Melilli
What do I do? My refund, though.
- [00:10]
Tony Mantour
I'm freaking out.
- [00:11]
LifeLock Representative
Don't worry.
- [00:12]
Belki Ortiz Melilli
I can fix this.
- [00:12]
LifeLock Representative
Lifelock fixes identity theft, guaranteed, and gets your money back with up to $3 million in coverage.
- [00:18]
Belki Ortiz Melilli
I'm so relieved.
- [00:19]
Liberty Mutual Representative
No problem.
- [00:19]
Belki Ortiz Melilli
I'll be with you every step of the way.
- [00:21]
LifeLock Representative
One in four was a fraud. Paying American. Not anymore. Save up to 40% your first year. Visit lifelock.com Specialoffer terms apply.
- [00:31]
Carvana Customer
Hey, sweetie. Your mother showed me this Carvana thing for selling the car. I'm gonna give it a try. Wish me luck. Me again. I put in the license plate. It gave me an offer. Unbelievable. Okay, I accepted the offer. They're picking it up Tuesday from the driveway. I haven't even left my chair. It's done. The car is gone. I'm holding a check anyway. Carvana. Give it a whirl. Love ya.
- [00:54]
Carvana Narrator
So good you'll want to leave a voicemail about it. Sell your car today on Carvana. Pickup fees may apply.
- [01:00]
Liberty Mutual Representative
Foreign.
- [01:06]
Tony Mantour
Welcome to why Not Me? Embracing Autism and Mental Health Worldwide. Hosted by Tony Mantour. Broadcasting from the heart of Music City, usa, Nashville, Tennessee. Join us as our guests share their raw, powerful stories. Some will spark laughter. Others will move you to tears. These real life journeys inspire, connect, and remind you that you're never alone. We're igniting a global movement to empower everyone to make a lasting difference by fostering deep awareness, unwavering acceptance, and profound understanding of autism and mental health. Tune in, be inspired, and join us in transforming the world one story at a time. Hi, I'm Tony Mantour. Welcome to why Not Me Embracing Autism and Mental Health Worldwide. If these conversations resonate with you, I invite you to tap follow. It helps us to reach more people who may need to hear them. Thanks for being here. Joining us today is Belki Ortiz Melilli. She is a voice of strength, resilience, and hope for families navigating their journey of autism. She has dedicated her life to empowering others through education, compassion, and real conversation. Through her work, she helps families move from isolation to understanding and from overwhelm to purpose. She has a great story. So before we dive into our episode, we'll be right back with an uninterrupted show right after a word from our sponsors.
- [02:50]
LifeLock Representative
It's tax season, and at LifeLock, we know you're tired of numbers, but here's a big one. You need to hear billions. That's the amount of money and refunds the IRS has flagged for possible identity fraud. Fraud. Now here's another big number. 100 million. That's how many data points LifeLock monitors every second. If your identity is stolen, we'll fix it. Guaranteed. One last big number. Save up to 40% your first year. Visit lifelock.comspecialoffer for the threats you can't control. Terms apply.
- [03:20]
Belki Ortiz Melilli
Mom, can you tell me a story?
- [03:21]
Carvana Narrator
Sure. Once upon a time, a mom needed a new car.
- [03:24]
Belki Ortiz Melilli
Was she brave?
- [03:25]
Carvana Narrator
She was tired mostly. But she went to Carvana.com and found a great car at a great price. No secret treasure map required.
- [03:32]
Belki Ortiz Melilli
Did you have to fight a driver?
- [03:33]
Tony Mantour
Nope.
- [03:33]
Carvana Narrator
She bought it 100% online from her bed, actually.
- [03:36]
Belki Ortiz Melilli
Was it scary?
- [03:38]
Carvana Narrator
Honey, it was as unscary as car buying could be.
- [03:40]
Belki Ortiz Melilli
Did the car have a sunroof?
- [03:42]
Carvana Narrator
It did, actually. Okay, good story. Car buying. You'll want to tell stories about. Buy your car today on Carvana. Delivery fees may apply.
- [03:50]
Tony Mantour
Thanks for coming on.
- [03:51]
Belki Ortiz Melilli
No, thank you for having me.
- [03:53]
Tony Mantour
Oh, it's my pleasure. If you would, could you tell us what first connected you to autism?
- [03:58]
Belki Ortiz Melilli
Well, I am an autism mom, so. So I have almost 17 year old. He'll be 17 now in March. Son who is nonverbal, autistic. He obviously has very high needs. I mean, we haven't had him, you know, tested again, but last we tested him, he was like maybe 12 or so. And he was more like a 3 to 4 year old maybe when it came to his abilities. You know what? We could, I would say test and see. So we haven't done that again. I think he is all over the place. I don't think it's just one age range that he's. I think there are certain things I think he processes at an older level. So that's why I'm like, no more of those.
- [04:38]
Tony Mantour
Sure. Can you take us back to the moment you first realized something wasn't quite right with your son? Can you take us to that moment when it became clear that you had to take action?
- [04:48]
Belki Ortiz Melilli
Well, I have another son who is a year and three months older than him. It's a very long story the way that everything went down with us and our kids. But my son, who is on the spectrum and nonverbal, he was one of multiple babies that. That was airy. So he and one of the babies that were born were born at six months gestation. So they came super, super early. And my daughter unfortunately didn't, you know, make it Past five days. And then he did. They both got a very interesting thing, but they both got brain bleeds in the NICU on the same exact day, right around the same time, even though they were in different isolates. Very, very strange, but they did. And then she ended up passing from hers, and he. I think she had a grade four and a grade two. So we already knew that we would probably encounter some issues, you know, with him. But then when he was. He was developing quite well. He was in the NICU for over three months. But then once he came home, you know, we had just the issues with digestion and tummy aches. And so we had a lot of those issues that we had to deal with with him. But he seemed to be progressing around the birth. Not the birth age, but what his birth should have been when he was about six months or so. But then when he was reaching, like, let's say he was like nine months. And I remember my other son was reaching milestones about six months that he hadn't reached at nine. So then I immediately was like, okay, well, Evan was doing this. Connor's not doing this. I just started really. Just really honing into the things I was noticing were not happening at the time, the when it should be done. And I'm one of those people who. I like to research everything. So before I even became a mom, because I had to do IVF and all those things to become a mom, I was very educated, and I bought books about all sorts of things that you could possibly imagine. And one of them was about autism and learning the signs of autism and other, what would you say, developmental issues that your children can have. So that actually helped me also, because I didn't see those with my first, I started to see those with my second. So then right away, I started asking questions to the pediatrician and saying, I don't see this. I don't see that happening. And of course, they're saying, oh, well, he was premature. Oh, he's a boy. You know, all the same kind of things that you hear a lot of people say. So, yes, it was like, a little bit of a battle because nutritions look at you like you're crazy because you want to give your kids some sort of diagnosis. And I'm like, I know that something's not right. So, yeah. So it took a while for me to get the help I think he needed.
- [07:29]
Tony Mantour
What do you think most people misunderstand about autism? Your son's going to be, what, 17 or 18?
- [07:37]
Belki Ortiz Melilli
He's going to be 17 now.
- [07:38]
Tony Mantour
Okay. 17.
- [07:40]
Belki Ortiz Melilli
Yeah.
- [07:40]
Tony Mantour
Okay, so you've gone through 17 years of autism. What are some of the things that you think people just don't get?
- [07:48]
Belki Ortiz Melilli
They don't get that there is a spectrum. Even though you hear about the autism spectrum, I feel like people don't understand the spectrum. Like, every time I say I have a son on the autism spectrum, they always think he can speak. They always think he has a gift. They always think of Rain Man. It's just. It's a constant. Like, I don't understand how people are not more educated about autism. You know, I lived in New Jersey. Now we're in Arizona. I'm a New Yorker. But I felt that on the east coast there was a little bit more of an education around autism. When I would have conversations, especially the last, you know, like, maybe when he was like five or six, I felt like people were a little bit more educated. But then I move over to the west coast and let's say this state, and not that people here are ignorant by any means, I just feel that there is less of an awareness of what the spectrum is actually about. And of course, because they continue really change how we diagnose what we name these diagnoses from. You know, oh, Asperger's, now Asperger's doesn't exist, blah, blah, blah. Now it's 1, 2, 3, what level are they? And then people are completely confused about these levels and what they mean. I feel like, you know, my son is a level one and my 18 year old is actually a level three, which is something I don't really speak about because he is higher functioning and he has been usually very private about this, and we've come to a place where he's more open about it. I don't think they should be anywhere in the. Even though I know there's a one in three, not one to three, I still feel like they shouldn't be in the same categories. They shouldn't be. I just feel like there should be some other metric for someone as high functioning as my other son who will get married, have kids, drives, all those things.
- [09:32]
Tony Mantour
In your bio, you describe yourself as an autistic mother and advocate. When did that shift happen? When did you realize that parenting alone wasn't enough and you had to move into advocacy?
- [09:45]
Belki Ortiz Melilli
Well, for me, it was. I would say he was about maybe three. My youngest was about three. My other son didn't get diagnosed till he was. I think he was in sixth grade or so. So he was a little older. But my youngest, I felt that I Handled. And I don't know if it was because I kept fighting so hard to be heard and to be, you know, listened to about what I was, you know, seeing within him that once I got the diagnosis, I was lividly excited. Like, I was, like, happy, which is not the normal reaction. I was like, yes, yes, now I can get help. You know, I can get to call people. Now I can get, you know, help from, let's say, the insurance company and this, you know, all that. So I immediately just got to work and kind of didn't process the actual diagnoses a hundred percent. It was more like, I need to get him to help right now. And I just kind of went right into it. And I think that. Not that we all moms will react the same way, but I felt like I just wanted to help other moms kind of, you know, get this news and say, okay, let me empower them to say, you know, this is not the end of the world. It's still the same child that you walked into this doctor's appointment before they told you 100%, same child, same struggles, same virtue, same everything. Now you just know more about them and now you know how to help them further better. And a lot of the time, if you catch this early on, you are able to help your child even more so than if you would have waited years, years if you would have just stayed, you know. So I decided I wanted to not just help other moms, but get a life coaching certification. So I went and got certified and I did it with, like, a school that it took me eight months to get through it. So I was not, like, I wasn't going for a quick, easy thing. I was like, I wanted to make sure I got, like, something that was legit and I could really help moms so that I became what we would call an autism support coach. And I realized, though, once I started that we are spending a lot of money on things that are not covered for our kids, right? So we would have speech, pt, ot, like, there was so many different therapies. And then a lot of the time insurance wouldn't cover everything, so then we would have to cover part of it. Or if your state had DDD or, or something that would help you towards the cost, almost never covered everything. So I was like, okay, these parents can't afford me. So then I was like, you know what? I'm going to do it at no cost. And then I just started doing it at no cost and just talking to parents and, you know, and that's What I did for probably a years, but then I got burnt out. I got totally burnt out.
- [12:26]
Tony Mantour
I can totally understand that. That was actually my next question. How did you handle that? Every mother I have spoken with gets burnt out about autism in some form or some way. So how did you navigate through that burnout? So you could not only be in support of your son, but also support yourself and all the others that you're trying to help?
- [12:49]
Belki Ortiz Melilli
I honestly can't tell you. I think we are all. I think our own biological makeup sometimes makes us a little bit more resilient than other people. So I feel because I was a daughter of immigrants, I was someone who had to work from when I was very, very young. I knew what it was like to not be able to go away to college, to have to work, you know, through high school, have to work through college, you know, in the city, in New York, you know, pounding that pavement. You know, I feel like I was just used to very hard work and very difficult life situations. Right. So this was just more life situation that was going to be difficult. So I just handled it the best that I could. I feel that I had a good network of support around me. My husband had a good job, so I was able to stay home and do whatever I needed to do for my son. So I think that was obviously very, very helpful. But there was a lot of things that were really hard to handle, like, you know, smearing, like, you know, poop smearing, things like that when he was like little and you know, they get out of their clothes and you have to find ways to put them in these outfits, but then they find ways out of that. So was a lot of different things, but for some reason I would cry and then I would just be like, okay, you cried, you got it out of your sister in law and let's go do what you got to do. And it was cleaning up. Whatever I had to do, I just got it done and that was that. I don't know if that's even the greatest answer, but that's really how I dealt with it. You know, I just didn't. I wasn't so all me the whole time.
- [14:20]
Tony Mantour
Sure, that makes sense now. I'm glad you brought up your husband. Within autistic families, there's about an 80 to 90% divorce rate because of the struggles they go through. Did it affect your family? And if it did, how did you get through it?
- [14:35]
Belki Ortiz Melilli
A lot. A lot. And till this day it does. We have completely different ideas of how to correct certain behaviors. I am a Lot more easygoing, a lot more, oh, oh. You know, I don't know if it's because I'm a mom, but I'm just that way. And then my husband is a lot more like, you know, oh, he eats chocolate chip cookies and throws half a little chocolate chips on the floor. Now let's get this little trash can. He has to put the. In the trash can and things like that. Where I'm more like, okay, I'll just take a broom and sweep it. Because I'm like, you know, I guess I'm dealing with a lot more things, so I'm more tired and I don't want to deal with a lot of other things. So he's more willing to deal with those as I am. Just more like, I gotta pick my battles. And that's how we kind of work as a marriage. And also, I think it's. It's a lot of talking, you know, it's a lot of talking and understanding each other and why we feel the way that we feel. And in my case, it's like, my thinking is these are the best years of his life. This is it. I am going to pass away. My husband's going to pass away. Hopefully our other son can help out with him. But these are the best years. And this is when I can make sure he is the happiest he can ever be. And that is what I focus on every single day. It's his happiness.
- [15:50]
Tony Mantour
That's really good. That's a great way to look at it. What strengths do you see in your family where you have to deal with autism and everything that entails? What do you see for strengths in your family that other people just may not understand?
- [16:05]
Belki Ortiz Melilli
Well, what we have in strengths is that we honestly are in the way that we, I guess, in the way we communicate. I think we have to be more open about things because, like, we are not open and communicate about everything. Then we have nothing, basically, is what it is. What I can tell you is that a lot of our friends who have kids that are typical, they don't always see the blessing that they have. They don't always see how they have all of these options that we don't have. And that's what drives me a little bit crazy sometimes, because I'm like, God, like, you don't see. Like you can actually sit your child down and like a rational conversation with them and you choose not to sometimes, or you tell me and then, you know. So that's what I see. I actually see more of how other people don't appreciate what they have.
- [16:56]
Tony Mantour
Honestly, now we talk about autistic parents, we talk about autistic kids, their identities. They have. How has this changed the way you look at yourself as an autistic mother who is doing what she needs for her autistic son?
- [17:12]
Belki Ortiz Melilli
Well, I. I see myself as way stronger than I ever thought I was. I think that's actually the one thing that I have gained from being an autism mom is if you would have told me all my. I was gung ho, that I was not having children. Like, that was my thing. No kids. I'm never having kids. Like, I'm gonna, like, travel the world, and that's gonna be my life. And, you know, maybe I won't even ever get married, but I'm definitely not having kids. Like, that's who I was. More focused on my career and all those kinds of things. And then when I decided to become a mom, I became a mom at 33. So a little later, you know, for my age, I'm 51 now, I became a mom later. I think it just, like, if you would have told me then that this would be my life, I would have said, I could never do this. I could never. No freaking way. But for some reason, you get the strength and you do it. It doesn't make it easy, obviously, even if you have that mentality. But the mentality that I did go into as a woman in her mid-30s, trying to have children and also being told I cannot have any easily, right? That having to do fertility treatments was, I'm going to accept whatever I'm being given as mom and my firstborn because I, you know, I was 33. They were like, oh, you know, you have a high chance of having a child. Down syndrome, all these different things. Then they wanted to do the adenosynthesis and all this stuff. And I'm like, nope. You know, it was hard enough to get pregnant. It took me three years. I'm like, I am not letting you do an amnio. And they were like, but, you know, if the baby. And I'm like, nope, I'm not. I'm not doing it. I'll take whatever comes to me. That's what it is. And I think that is a resolve that I know that I had then at that moment of wanting to become a mom.
- [18:54]
Tony Mantour
Sure, sure. Now, when people, your friends, your family, the ones you help with your advocacy, 10, 15, 20 years from now, when they look back at the work you've done for the autistic community, what do you hope they say changed because you showed up.
- [19:14]
Belki Ortiz Melilli
Well, I hope it's more just awareness, just education surrounding what it is like, especially when it to nonverbal children. Because I think that's absolutely the hardest part of autism is when you have an autistic child who is non verbal and one that cannot take care of themselves. So it's not just that they're non verbal because we know that there's many nonverbal individuals that can type and all these things. And you know, and we're still, we haven't decided he can't type yet. We're still in that process of, you know, where he's learning letters, all this stuff. Let's go see if he can communicate through a device advice. So we're still in a place where we're not saying he can't do this or that. I'm hoping that what people that meet me walk away with is you just never give up. But you're also realistic and you're also are given a situation and you find the best opportunities within that situation for yourself and for your child and your family.
- [20:10]
Tony Mantour
I just had a mother of a nonverbal autistic daughter on an episode just a couple of days ago, ago she said, imagine putting a piece of tape on your mouth and trying to communicate what it is that you want. It's very obvious a lot of people do not understand what a mother of a non verbal autistic child has to go through.
- [20:33]
Belki Ortiz Melilli
Yeah. And what that does to a lot of us is it becomes like a prison because you're a prisoner in your home. Even though people say, oh, you know, I'll watch him, you're like, oh, no, no, no, you don't understand. Like there's like all these different things. Things. It's like he can't communicate 100%. You're going to be confused. Even if, you know, my son can communicate through his iPad with the Proloquo to Go app, but he doesn't because we know him so well. Like sometimes he doesn't even have to say anything. Like we have like almost like a psychic connection to him. Well, we kind of know what he's looking for or what he wants or the by the time we kind of know and we are almost always right, you know. So that's what I think a lot of people don't understand is like when you have someone like that, it's not as easy as, oh, just leave him with me for a couple hours. There's so much that may happen in those couple of hours that you have to know how to handle and how to deal with.
- [21:28]
Tony Mantour
There's a saying that people have different seasons throughout their lifetime. What has been one of your more difficult seasons in your journey then? What helped you get through it?
- [21:39]
Belki Ortiz Melilli
To be honest with you, I think this is the most difficult season. Even though when he was younger, there was a lot of uncertainty because you don't know what's happening. They keep saying they can talk by the same stage, they can do this by the stage, or, you know, and you're. You're all. You have all these hopes and dreams and whatever. I think now as they get older is when you're becoming more of like a sober. Like, you're looking at this more in a sober way, like, this is it. Like, this is kind of it. So then you know that there's not a whole bunch more that can possibly change. So I would say this is the most impactful time because this is the time when he's gonna be 17 years old. He's almost an adult now. I have to start thinking about conserv all these things. Like, it basically confirms that, okay, now for the rest of your life, this is your responsibility. You're not going to have, you know, the emptiness syndrome. Like, this is. This is it. So now you have to make sure that every other plan involves this individual always and forever.
- [22:41]
Tony Mantour
Yeah, that's a very hard reality, but it is one that we all have to look at.
- [22:47]
Belki Ortiz Melilli
Exactly.
- [22:48]
Tony Mantour
So looking back, back, what kind of support do you wish you had early in your journey to help guide you get more information so that you knew exactly or close to what you might be looking for in the future?
- [23:02]
Belki Ortiz Melilli
So I happen to be one of those people, like I told you earlier, that I research everything before. So I honestly had a lot more of a doom and gloom vision of everything at the very beginning. And I was someone who asked for a lot of advice. I. I did moms groups. I did, you know, I did it all. I was involved, like, you know, in autism awareness campaigns. I volunteered for autism research. I worked with the organization of autism research just to. Just to be part of a community raising funds for research. Like, I was really in the nitty gritty of everything while he was also going through the nitty gritty of growing up and learning to go to the bathroom and all those things. Things. So I honestly feel that I surrounded myself with a lot of people that had kids in all parts of the spectrum. So that was very, very helpful for me. What I have noticed is that as they get older, those groups kind of fall apart. And that's what I have noticed, because the kids kind of end. Not end, but they get to a certain point where there's not that much developing. They kind of have their personality now. So I think parents rely less on other parents of kids on the spectrum. So now I find it to be like, if I have my friends that I still have, our kids are older. So now it's a lot less about autism. It's more about what we're doing for ourselves.
- [24:27]
Tony Mantour
You mentioned friends. This kind of popped in my mind. So many people that I've spoken with over the last couple of years, they've had friends that they would do things with. They all had kids. One had an autistic kid. Kid that changed everything. There was a disconnect. The neurotypical family did not fully understand the neurodivergent family. Did that happen to you?
- [24:53]
Belki Ortiz Melilli
Yes. And the reasoning behind that is because you can't just go on a play date. You know, your child can't sit and play with them. Like, they can play beside them right side by side, but they can't play with them. So that obviously makes that other parent feel like, well, I need to hang out with parents that have kids that can play with my kids, and then we can talk and hang out with each other. So you tend to hang out. I didn't do even many play dates with the parents and the kids that had autism because the kids were never playing together. They were just in the same room, and we were all together chatting. But the kids were out doing their own thing. Wherever we were, they were kind of just doing their own thing. And some of them would have a little bit of an interaction here and there. But we realized that it was better for us to meet separately on our own. The kids with our husbands. The kids were getting their time at school. You know, Connor started obviously with. Even before three years old, he started like at a daycare for special needs children that he would go in for several hours, and then I would have his therapies take place there and then also at home. But he would be able to be around other kids there and then come home, do more therapy at home. And then at 3, he went into like a. More of a typical school that had an autism program until we moved into an autism school. So in reality, having the parents that we have, the typical kids, like, that kind of fell off. And then it became more about having parents that you could understand each other and that. That you were of support to each other.
- [26:20]
Tony Mantour
Where do you feel the conversation needs to go? About autism over the next five to 10 years.
- [26:25]
Belki Ortiz Melilli
I feel that's a tough question because I feel that the conversation needs to be a lot more awareness when it comes starting literally at the level of kindergarten. And that's one of the reasons why I love the organization for autism research is because they have books, they have invested a lot in educating not just children in schools and they have age ranges for each one of their educational packets. They also do siblings. They also help with work, helping the the adult population find work. I think that is what we need, more complete awareness. What kind of jobs can our kids do Even if they're non verbal? Maybe they like to stuff envelopes. Who the heck knows? There's so many things that they can do. It's really starting from the very bottom so that when your say you want to have a kid that's in an all inclusive environment, right? That maybe the kids who are typical don't look at them in a weird way because maybe my son can't speak, but my son can absolutely take in the energy of other people. So when your kids are looking at them or treating them a certain way or whatever, like they have to feel that energy. So I feel like it's really all still about awareness. And then as they get older, opportunities to be able to do things outside of school that help them learn some skills, not just in school school, but outside of school that prepare them for a little later in life. Even if it's menial tasks, even if it's a small thing, it makes them so happy if it's something they enjoy.
- [27:56]
Tony Mantour
For first time listeners that are just starting to find out about autism, what do you think is one of the more important things they learn? As you know, when they first find out their child is autistic, it is overwhelming. They don't know what to do. So many people telling them what they need to do, what do you think is the most important thing they find out so they can take that path, learn what they need to do to make their journey a little easier to move forward in helping their child.
- [28:28]
Belki Ortiz Melilli
So that is actually a lot of what I did when I did my coaching was literally coach moms whose kids were just diagnosed how to navigate the journey of I just got this diagnosis for my son. What do I do? I am completely overwhelmed. Overwhelmed. So then what I would do is tell them, okay, the first step is they're going to tell you, they're going to give you the whole diagnoses and obviously the report, they're going to tell you what therapies they need. Now let's see what are the availability of services in your state. Let's start there. Because even though you think I have insurance, there are states that can actually pay 100% of your child's. You know, we're in Arizona right now, which I did not know because we were living on the east coast when he got diagnosed. For example, here, here in Arizona, the ddd. Once you go into the DDD and you apply, once you get the diagnosis, you apply, you have your diagnosis, then they accept you in, then you go in and you fill out for long term care, especially if they're non verbal still. And long term care is part of the ddd. So there they'll give you the services for speech, for pt, ot, all of those things, right? Everything. And then once they approve those, you get all of those services at no cost to you. They give you certain amount of hours, all of that. Not only do they do that, but they also give you a certain amount of hours depending on your child's diagnosis, level of rest and habilitation hours. So you get monthly, you get yearly respite hours, you get weekly half hours. So that is somebody coming into your house helping you like let's say 15 hours a week, helping you with teaching them how to use the bathroom, how to wipe, how to brush their teeth, how to comb their hair, all of these different things. But a lot of people don't know that these services are available to them. So it's basically look into what's available for you. I have never had to touch insurance. We have insurance through DDD here in Arizona. So he doesn't have an insurance like my husband and I and my other son have. It's DDD 100% covered, like every single thing. So that's the first step. Find out what your state can offer you. Then if you can't get everything covered, then go to your insurance, see what's covered, what's not covered, what can afford. It's a long list of things. But if you have someone helping you navigate that list, you know, saying, okay, let's tackle this next two days like everything. Take your time and don't overwhelm yourself. You can't do it all in a week. It's going to take time. Appointments are going to take time. Don't think that this is just happening to you, it's happening to everybody. Sometimes appointments take months to be able to get with a specialist after the appointment and the diagnosis. So it's more about patience and just educating yourself while you're waiting.
- [31:11]
Tony Mantour
Yeah. Good information. What do you think is important for listeners to hear about where you are in your life right now? Now. And what do you want them to understand?
- [31:22]
Belki Ortiz Melilli
What I'm doing right now at this stage in my life is I'm past the time where it was all about my son. I am in a stage of my life now that I am also taking care of myself and my family and all those things that I want to do. So work towards the point where you feel comfortable enough to pick up all the things that you love to do that maybe you weren't doing all the way because you were concentrating on the needs of your child. Build yourself a village of people who will be there for you so that you can go travel and they can help you with your child or that you can go to dinner with your husband to keep that relationship strong. So it's really all about to get to the point to where you have a life that is satisfying to you and it's not all about autism and that your life doesn't have to be about that. When you're out with people, you're not just talking about autism. And then people are like, oh, my God, you know, Belki only talks about autism when we're together. You have to know when and where is the right time and work towards that, that you are independent of that as a human being, as a soul.
- [32:20]
Tony Mantour
Well, this has been great, great conversation, great information. Thanks for taking the time to join us today.
- [32:26]
Belki Ortiz Melilli
Thank you so much. I'm hoping I got a lot of points that are useful for people.
- [32:31]
Tony Mantour
Absolutely. It's been great. Thanks again. Thanks for taking time out of your busy schedule to listen to our show today. We hope you enjoyed it as much as we enjoyed bringing it to you. You. If you know someone who has a story to share, tell them to contact us at why Not Me World. One last thing, spread the word about why Not Me. Our conversations are inspiring guests that show you are not alone in this world.
- [33:18]
Liberty Mutual Representative
And Doug, there's nowhere I wouldn't go to help someone customize and save on car insurance with Liberty Mutual. Even if it means sitting front row at a comedy show.
- [33:28]
Carvana Narrator
Hey, everyone, check out this guy and his bird.
- [33:30]
Belki Ortiz Melilli
What is this, your first date?
- [33:31]
Liberty Mutual Representative
Oh, no. We help people customize and save on car insurance with Liberty Mutual. Together we're married. Me to a human, him to a bird.
- [33:38]
Belki Ortiz Melilli
Yeah, the bird looks out of your league.
- [33:40]
Liberty Mutual Representative
And anyways, only pay for what you need@libertymutual.com.
- [33:43]
Belki Ortiz Melilli
liberty. Liberty. Liberty. Liberty.