Belqui Ortez Millili: An Autism Mom's Strength and Journey to Advocacy

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It helps us to reach more people who may need to hear them, thanks for being here. Joining us today is Belki Ortiz, Malili. She is a voice of strength, resilience, and hope for families navigating the 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 overwhelmed 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 we're at for our sponsors.

Thanks for coming on. No, thank you for having me. Oh, it's my pleasure.

If you would, could you tell us what first connected you to autism?

Well, I am an autism mom, 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 three to four 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 in. I think there's certain things. I think he processes at an older level.

“So that's why I'm like no more of those.”

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? 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 was up in our kids, but my son who is on the spectrum and nonverbal, he was one of multiple babies that I 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 it very interesting thing that they both got bring leads 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 great four and he had a great two. So we already knew that we would probably encounter some issues with him. But then when he was, he was developing quite well, he was going to make you four over three months.

But then once he came home, you know, we had just the issues with digestion and amyaches. 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 holding into the things that was noticing word, 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 they 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 science of autism and other, what would

“you think 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 say, I don't see this.

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 your traditions look at you like you're crazy because you want to give you in some sort of diagnoses and I'm like, I know that's something that right.

“So yes, so it took a while for me to get the help I think he needed.”

What do you think most people misunderstand about autism? Your son is going to be what 17 or 18. He's going to be 17 now. Okay, 17. Yeah.

Okay. So you've gone through 17 years of autism. What are some of the things that you think people just don't get? 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 guess. They always think a 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 live to 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 continually change how we diagnose what we name these diagnoses

from, you know, asperters.

Now asperters doesn't exist blah blah blah, now it's one, two, three. 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 and three and once a 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 metrics for someone as high

functioning as my other son who will get married, have kids, drives, all those things. 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?”

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, so 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 vividly excited, like I was like so happy, but 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, to 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 a hundred percent. Same child, same struggles, same virtues, 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 of 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 and 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 that we would have to cover part of it, or if your state had BDD, or something that

So I was like, okay, these parents can't afford me.

So that 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 couple of years, but then I got burned out.”

I got totally burned out. 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. 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 tape, you know, I feel like I was just used to very hard work and very difficult life situations, right? So this was just one 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, but has been having 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, oops, 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 there 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 system, let's go do what you got to do when it was cleaning out, whatever it 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. 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?

How a lot, a lot and until the day it does, we have completely different ideas of how to correct certain behaviors. I'm a lot more easy going, 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, it's chocolate, it should cook even

throws half a little chocolate chips on the floor. Now let's get this little trash can. He has to put it in the trash, 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 got to 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 what I can make sure he is that happy as he can ever be. And that is what I focus on every single day. It's as happiness. 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? 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, it's 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, you don't see, 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, 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

Well, 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 life I was going home that I was not having children. Like that was my thing. No kids. I'm never having kids. I'm going to travel the world and ask to be my wife and 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 61 now, I became a mom later. I think it just, like if you were to tell me then that this would be my life, I would

have said, I could never do this.

I could never know, 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 a mom. And my first born, because 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 animals in thesis and all this stuff. And I'm like, nope, you know, it was far enough to get pregnant.

It took me three years. I'm like, I am not letting you do an amno. And they're like, but you know, it's a 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 result that I know that I had then at that moment of wanting to become”

a mom. 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 change because you showed up? Well, I hope it's more just awareness, just education surrounding what it is like, especially when it comes to nonverbal children. Because I think that's absolutely the hardest part of autism is when you have an autistic child who is nonverbal and one that cannot take care of themselves.

So it's not just that they're nonverbal 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, we're, he's learning letters, all this stuff. Let's go see if he can communicate through a device.

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. I just had a mother of a nonverbal autistic daughter on an episode just a couple of days ago. And she said imagine putting a piece of tape on your mouth and trying to communicate

what it is that you want and it's very obvious a lot of people do not understand what a mother of a nonverbal autistic child has to go through. 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, you don't understand."

Like, there's like all these different 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 a perlocal to go at. But he doesn't because we know him so well.

Like, sometimes he doesn't even have to stay 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 why 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. 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? To be honest with you, I think this is the most difficult season, even though when you was younger, there was a lot of uncertainty because you don't know what's happening. They keep saying they can talk by the stage. They can do this by the stage or, you know, you're all these hopes and dreams and whatever.

I think now as they get older is when you're becoming more like a sober, like you're looking at this more and a sober way, like this is kind of it. So then you know that there's not a whole bunch more that can possibly change.

be 17 years old, he's almost an adult now I have to start thinking about conservatorship

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 this is it.

“So now you have to make sure that every other plan involves this individual always and”

forever. Yeah, that's a very hard reality, but it is one that we all have to look at exactly. So looking back, what kind of support 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.

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 did mom's groups, I did, you know,

I did it all. I was involved in autism awareness campaigns, I volunteered for autism research, I worked with the organization of autism research just to be part of a community raising funds for research. That was really in the nitty-gritty of everything while he was also going to the nitty-gritty

of growing up and learning to go to the bathroom and all those 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, but they end 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 they 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.

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.

That changed everything. There was a disconnect. The neuro-typical family did not fully understand the neuro-divergent family. Did that happen to you? Yes.

And the reasoning behind that is because you can't just go on a playday. 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 level. 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 conscious of 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 that 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 away for several hours. And then I would have his therapist 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 three, he went into like a more of a typical school that had in autism program, until we moved into an autism school. So in reality, having the parents that we had the typical kids like that kind of fell off.

And then it became more about parents that you could understand each other. And that you were of support to each other.

“Where do you feel the conversation needs to go about autism over the next five to ten years?”

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 booklets, they have invested a lot in educating not just children in schools. And they have age ranges for each one of their educational packet.

They also do siblings, they also help with work, helping the adult populations 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. Through the hypnosis, there's so many things that they can do.

It's really starting from the very bottom so that when you're child,

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

school that outside of school that prepare them for a little later in life, even if it's menial task, even if it's a small thing, it makes them so happy if it's something they enjoy. 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? 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've just got this diagnosis for my son?

What do I do? I am completely 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

“record 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 haven't sure, there are states that can actually pay a hundred percent of your child's, you know, where in Arizona right now, which I did not know because we were living on the East Coast when he got diagnosed. For example, here in Arizona the DDD, once you go into the DDD and you apply, once you get the diagnoses, you apply, you have your diagnoses, 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 those things, everything. And then when 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 diagnoses level of

arrested and habillitation hours. So you get monthly, you get yearly, rest at hours, you get weekly, have 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 rest your 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 looking to 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 that covered, what kind of for it? 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 list in the 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 at the diagnosis. So it's more about patients and just educating yourself while you're waiting.

Yeah, good information. What do you think is important for listeners to hear about where you are in your life right now? And what do you want them to understand? What I'm doing right now at this

“stage of my life is I'm past the time where it was all about my son. I'm 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 loved to do that maybe you were 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, but 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 light 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, Belpie only talks about autism when we're together. You have to know

is the soul. Well, this has been great, great conversation, great information. Thanks for taking

“the time to join us today. Thank you so much. I am hoping I got a lot of points that are useful”

for people. 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

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