Not Your Mama&#39;s Autism (NYMA)

Larissa Heise (03:18.111)

Yeah, no, there are behaviors that make people uncomfortable. There's behaviors that people don't understand, right? But when we're talking about challenging me, we're talking about, really, I want to anchor it to like safety, safety concerns and things that are impacting the individual's quality of life, not necessarily somebody's perception of quality of life,

Lola Dada-Olley (03:25.276)

Mm -hmm. Mm -hmm.

Lola Dada-Olley (03:44.091)

Yep. So, looking at that as the level setting, what trends have you seen in your practice concerning some of the most common types of challenging behaviors that people, caregivers, educators are experiencing, are witnessing, I should say?

Larissa Heise (04:08.469)

I think recently especially, feel like in last five plus years, there's been so many difficult things in the world that have impacted everyone. And we've seen quite a bit of increase in behaviors where people are at risk for immediate danger. I would say there's always different levels, Behaviors, a lot of people I talk to, they're like, comes out of nowhere.

Lola Dada-Olley (04:24.038)

Larissa Heise (04:39.105)

That's very unusual for it to actually come out of nowhere. Usually it builds up over time, right? So we usually see people start the lower levels of behavior of kids who, if they're unable to communicate in like a traditional sense, they have a difficult time getting their needs met. We're seeing behaviors where they're finding ways to get their needs met. People get their needs met any way they can, right? And that might include hitting, biting, kick -gagging, throwing things. lot of property destruction is typical.

crying as kids get older. Oftentimes we see if those behaviors aren't supported or we're not giving ways to get those needs met or teaching ways to get those needs met. We can see them intensify right and so. Kids get bigger. And sometimes depending on their individuals like. Skill level or ability to communicate.

Lola Dada-Olley (05:29.19)

Yeah. Yeah.

Larissa Heise (05:36.663)

they might still use those behaviors to get their needs met, but they're in a much bigger body now, right? They're adults or they're teenagers and they still need to find ways to get their needs met. And those behaviors, even if they're exactly the same as they were when they were younger, can be very different in terms of safety as people grow older. generally like those kinds of things. And I would say it's across settings. think, you know, different...

people in different places, like in home versus school, have different resources. So maybe there's more to support in different areas, but oftentimes, like, not always, but more often than not, we are seeing those more intensive behaviors across all different places.

Lola Dada-Olley (06:25.81)

So when you mentioned earlier that you said certain, some people say it quote, comes out of nowhere, but in your practice, you've actually seen that that's almost not, almost always never the case. Could you give me an example of maybe a trigger that maybe most people don't notice that after maybe you all have kind of traced back the steps, you've discovered that this particular trigger is something that.

Larissa Heise (06:53.122)

Lola Dada-Olley (06:56.413)

folks should look deeper into.

Larissa Heise (06:57.099)

I think there are triggers that think a lot of people pick up quickly, right? And then there's the sneakier ones. But a lot of people, can usually tell like, it's because I set a limit or I said, no, we can't do that right now. We have to wait. Like those are common things or, you know, things like that. But I feel like if somebody has like a complex sensory profile, a lot of people assume

Lola Dada-Olley (07:09.702)

Larissa Heise (07:29.217)

behaviors are, that's attention. I will say this, attention is not a bad thing. I always try to reframe that for people like attention is connection. People are seeking connection, maybe they're doing that in ways that maybe want to shape that to a different, you know, that's not going to harm somebody. But a lot of times, sensory needs are often overlooked attachment. I think a lot of people overlook like a lot of individuals.

who have autism, people are just looking at autism and not looking at other co -occurring mental health needs, especially even for little itty bitties of like, hey, if they were moved a lot or they were adopted or they don't know how to connect, maybe it is related to autism, they just don't know how to connect or you don't know how to connect with them, right? We don't know how to like bridge that.

that difference, neurological difference, like kind of join each other. A lot of times that's happening more than I think people realize and they're kind of thinking,

it's attention. I'm like, no, no, attention is important. Like, let's talk about that. Like, what does that mean? Like, what are our relationships like? So yeah, common triggers that people don't always think of is like that relationship with other people. Having like a solid foundational relationship can make a big difference. And sensory needs, especially as people sensory needs get more complex. That gets tricky.

Lola Dada-Olley (09:06.396)

So can you give us an example of a situation where maybe a sensory challenge or a sensitivity may grow more complex as a person grows up?

Larissa Heise (09:23.383)

grows more complex.

Lola Dada-Olley (09:26.47)

or just, like for instance, I can give you an example in my own life with my son. So I have two babies on the autism spectrum, one now is a preteen, the other one's a teenager. So they don't want me to call them their babies, I'm sure, but they will always be my babies. I remember when my son started middle school, he used to always, he...

Larissa Heise (09:28.587)

Yeah, I'm sure I think I'm gonna do it. Sure. Yeah.

Lola Dada-Olley (09:52.882)

order to center himself. He likes the feel of jumping. So we got this big trampoline outside and as he's growing up, he used to say in very technical terms, Mommy, I need to get my wiggles out. I said, okay. And then I think he was starting seventh grade. Yeah, I thought that was fine to say. I think when he started seventh, he just started eighth grade today actually.

Larissa Heise (10:11.117)

I mean, I still say that.

Lola Dada-Olley (10:20.146)

But I think when he was entering middle school, so he was entering sixth grade and I said, Baby, you want to get your wiggles out? He said He goes I don't call it wiggles. I'm getting centered And I said Okay, I stand I stand corrected I stand corrected But I do wonder what the older teenager slash young adult

Larissa Heise (10:35.271)

Sure. Okay.

Lola Dada-Olley (10:49.404)

version of my son when he needs to feel centered and there's not a trampoline nearby. So I'm starting to get him to think of alternatives that could aid him in getting centered so that he's not so sensory seeking that he must find a trampoline. You can imagine if he's in an office setting, he's in a school, if he's in a college lecture room, if he's just...

Larissa Heise (10:56.236)

Hmm.

Larissa Heise (11:01.623)

Larissa Heise (11:05.73)

Lola Dada-Olley (11:16.476)

taking a walk in nature and he suddenly feels that need to feel centered. So that's one example of what I'm thinking of how sensory needs may become more complex and change over time as someone literally grows up.

Larissa Heise (11:27.607)

Larissa Heise (11:32.023)

Well, I think too, you know, especially in the example you give, like...

Larissa Heise (11:40.063)

I think that honestly, I love that example because I think it's just a good point of like how we approach supporting people learning about their own needs and like how to if, if you know, if he has a good understanding of like what his needs are in order to regulate in order to become centered, which I love, whether it's wiggling or, know, you know, if he has an understanding of that, then, you know, then we can look at the problem solving, like what do you need to

Lola Dada-Olley (12:00.923)

Larissa Heise (12:08.907)

meet that need either fully or in part, depending on what settings you are. And I think a lot of individuals when they're, you as they grow, they don't always have that support or they don't have an understanding always of like, and it's like a learning process, like everybody, right? Everybody as we grow up, we are trying to figure out what our needs are, you know, and I always say to like, everybody has sensory needs. I don't think we're always aware of them. Obviously, autistic individuals are like,

they have a larger need or have a more acute need oftentimes that they need to attend to in a lot of ways, whereas neurotypical people, we might not just think about it, but we have little things that just maybe aren't as interfaced sometimes. But yeah, I think that does become the trick as we grow older, if our needs are less able to be met in different ways.

Lola Dada-Olley (12:42.938)

or more visual need, like it's more obvious.

Larissa Heise (13:08.459)

settings or less socially acceptable. Sometimes, you know, that's the barrier to or just even like honestly, I was even thinking more basic of like, sometimes people like, I think this is what this person needs. I don't know, we're trying to help them figure it out. And like, that can be just tricky in and of itself. If especially if sensory needs are changing over time. So a lot of people

do have very consistent sensory needs like through their life, but other people, they change, like they change and what they need to regulate. Or they're very different in different situations, like some situations, like I need more input, whatever that input looks like in others, it's like I need to stop and I need to like unwind and kind of have some quiet. And so yeah, just, you know, as life gets more complicated, it's hard to know, it's hard to know, even at, you know,

I everybody kind of goes with that in some ways, but like add that other layer, right? Of like, okay, what do I need to do to take care of myself and to make sure I'm supported and not just in my own home, right? When I'm out and trying to be part of the world. Yeah, it just, I honestly, I don't even think I have a better example. I was like, no, I love that. Cause it's...

Yeah, it's just, especially when it's physical regulation, like to be able to like move and so yeah, just gets more complicated, like I think as we get older, so.

Lola Dada-Olley (14:43.384)

life just gets more complicated as you get older. I think there's this funny song that someone introduced to me and my husband years ago. It's out of Nigeria. Our family's originally from Nigeria and it's the loose translation is basically that adulthood is a scam.

Larissa Heise (14:46.112)

Larissa Heise (15:05.728)

You

Lola Dada-Olley (15:06.45)

I think there's a little bit of truth to that. There's some truth to that. So what do, in your practice, what are some things that you see that people commonly get wrong when it comes to challenging behavior? So some common misconceptions in this space.

Larissa Heise (15:10.157)

Larissa Heise (15:37.025)

I think one of the most common misconceptions is, and I don't think people do this on purpose, but a lot of times, every, you know, we're all human, right? We want to make sense of what we're seeing. And so a lot of times they're like, well, I saw it with this kid. So this was what's happening with this kid. And even within a family unit, right? Like, well, you know, the brother did X, so he's doing the same thing. And you're like, or like, I went through the same thing.

kind of saying, well, I know that's what I need. That's what it's like we, we don't sit and really look at the situation as a whole, and really kind of evaluate the individual's needs. We oftentimes, I think it's honestly like we do this also as way to empathize with like, well, this is what I think they need to like, I'm trying to help. Like, it's not, it's not without good intention, as I guess when I'm saying, but people think like,

They kind of fill in the blanks without really looking at the whole picture. And they try to put things in place to support that individual with good intentions. And they just sometimes miss the mark or sometimes make things worse unintentionally. Where they're like, I thought I was helping.

It was nice. I love the effort. Good intentions does count, but we also want to really put that person in the focus of like, there's a saying that I'm thinking of, it's not what I think you need, it's what you think you need. Do you know what I mean? not, it's what really dig down of what they're trying to, what need they're trying to get met in that moment.

without trying to put too much of our own bias, our own fill in the blanks, kind of, it's kind of like do the work and let's like really dig in and get a full understanding. There's somebody in the ABA field who says, Dr. Hanley who talks about like, I'm not gonna try to change anything until I fully understand your needs and your behavior because

Lola Dada-Olley (17:30.087)

Larissa Heise (17:50.795)

you know, for if we don't have an understanding, yeah, there might be things we have to put in place to just be safe. But like, we're not we're not going to teaching new things or doing new things until we really understand where that's coming from is it's going to fall flat or be frustrating for the person. Right. And learning new things is already frustrating, even when it is a valuable skill, let alone something that they're like. That's not what I need. That's not what I need.

Lola Dada-Olley (18:16.292)

That may not come naturally. Yeah.

Larissa Heise (18:20.529)

so I think that's the most common thing of like, try and really to step back and say like, this is a need. Like, and it's not about me or any, like it's what does this person need in this moment? And am I really looking at all the factors and some, and that's hard. I'm not saying that's an easy thing to do, but like really evaluating, and really digging into like, what, what do they need in this moment? What's driving this?

Lola Dada-Olley (18:51.218)

So the build upon what you said, right, of the importance of trying to understand the fullness of the situation before you introduce the behavioral intervention.

particularly for folks on the spectrum who may have communication challenges, who may be minimally speaking.

Lola Dada-Olley (19:19.698)

How do you approach triggers? Is the goal to try and separate them from triggers as much as possible so they don't come into contact with them? Is it the goal to knowing that it's going to happen, that trigger's going to come to work more on that incremental approach? Is it some mix of the two? How do you approach those situations where it's difficult for them to communicate?

you the fullness of the situation.

Larissa Heise (19:51.415)

Yeah. So that's a great question. think, yeah, that's, a lot of it is like from, this is more from my behavior analytics, analytic perspective. If I were gonna put a hat on me right now, sometimes I find myself like, being in both worlds, I find myself kind of like blending their approaches, but this is definitely more kind of like in that behavior analytic realm.

Lola Dada-Olley (20:06.556)

Larissa Heise (20:23.166)

There are lots of different ways, one, will say this, there's lots of different more technical things we could dive into and like talk about like how we evaluate that. But I don't want to like bog people down with that. What I will say is there's different levels of assessment and depending on the intensity, the complexity, I might choose different levels of assessment to ensure that the way I'm assessing

and the depth of which I'm assessing is really capturing everything that I need to capture and understand. And like you said, there's different ways to, I assess, there's also different ways to intervene. And I think as you work with individuals, more and more there's a safety risk, also just what's gonna be the most effective for each person, So it's always individualized. It's always like, what's gonna kinda click for them, what's gonna make the most sense for them.

But I will say that as we get into more and more extreme or unsafe behaviors, we do have to approach it in a more gradual and thoughtful way. Because if I'm working with an individual who's six foot two, 300 pounds, who doesn't have vocal communication, who has needs that they need to get met,

there's serious risks to myself and to that individual depending on what the behaviors are, right? So I need to be very thoughtful about the interventions we're utilizing. And they do need to be gradual because you don't want to overwhelm that person to the point where they are feeling frustrated. The goal should not be to hit a 10. You know what I mean?

I feel like the people within our fields who are more experienced with working with intensive behaviors, they understand that if we're doing things effectively the way we want, we won't hit a 10, right? Of course, we always prepare for emergency kind of situations, but if we're effectively supporting that person, we should be seeing positive change or supporting them at a level that they can handle and manage.

Larissa Heise (22:40.309)

And oftentimes when we're providing support, we have kind of a short term goal of like, what's going to help them right now and what's like a skill they can do right now. And like a long term goal that of course is going to like use that gradual approach. So I'll give you an example. Like if you have somebody that you work with that or that you know who even hearing the word no is an immediate trigger for like intensive

challenging behaviors, unsafe behaviors, where there's a of safety risks going on. We might have an immediate plan of like, okay, maybe we say not right now because the word no is so hot, so triggering, right? But we do still wanna work on long -term of like helping that person. I'm not gonna say that nobody's ever gonna love the word no. But like at least.

be able to respond differently or use different tools if that word comes up in conversation, right? So like that would be a long -term goal that we're gonna gradually work towards versus like, what do we need to do to support right now to make sure that they feel regulated? And I think that's the other, like to your earlier question of what kind of tricks people up. I think a lot of times when we're supporting these kinds of behaviors, people think about the right now. What can I do right now to help the situation?

but they forget about the later of like, yeah, you're right. Right now is important, but like, if we just keep doing the right now thing, they're not like people aren't gonna learn the skills that they need to be successful later, right? And they get confused about like, how do we teach that in a way that's safe, in a way that's supportive, in a way that, you know, meets their needs and keeps everyone safe. Like that's, that can be tricky. Yeah.

feel like I went a little bit on a tangent on that one.

Lola Dada-Olley (24:32.572)

So.

No, So when you talk about things being tricky, can you tell us an example of how when a certain strategy was going well for a length of time until it no longer started being effective, how did you help that person?

Larissa Heise (24:54.059)

Yeah,

Larissa Heise (24:58.635)

Yeah, think, honestly, I can think of a few, a few times because I do think that like, I think that's an important question because that does happen because we're again, we're all human things change. things change. Like you're like, okay, like that's not working anywhere. you know, and some individuals, they like, yeah, I get what we're doing here. I don't like it. Like, like that's not, we're not going to do that anymore.

Lola Dada-Olley (25:03.676)

Yeah. Yeah.

Larissa Heise (25:28.343)

So I'm trying to think of a specific strategy. I'll think of something real, real like kind of like a simple intervention that we did, like nothing, nothing crazy. know, difficulty transitioning into school. Okay, the first five minutes of the day, as soon as you get in, you can have some free play time and then like kind of transition into activities, right?

was gone, gone. You know, it was rocky at first. I was like, what's going on? always say people, people get confused when you change the rules on them. So they're like, I don't know. It's then, you know, kind of get used to it. Okay. It was working. It was going great. well, in this, in the situation I had, you know, they started, having the same toys at home that they had at school. This is a littler, not a little like an elementary,

kid I was thinking of, so they didn't care anymore. That's a basic example. I will say there's other times where you're like, I've seen things work for like a year and we're like, what happened? Like what changed? So usually if something changes, I look at first of has there been anything like, let's look at the environment, like what are we missing something? Did something else change that we just weren't paying attention to? Like maybe we didn't notice it, but

the individual noticed it because they're kind cute into that. And kind of look at that first and foremost. If we're like, really not sure what, we're not sure what changed. Sometimes we have to go back to the drawing board and say, okay, let's reassess what's going on here. Other times I will say of like, we miss something that happened, we just didn't think about it and maybe it wasn't.

as noticeable to us, but it was very noticeable to that individual. We have to go back and account for that and say, hey, oops, like, you know what, we're going to have a special thing at school when you get in here versus like the same thing you have at home or like, you know, things like that. So I guess what it always comes back to, like, I expect that to happen sometimes. If it's happening frequently, then I think like I would evaluate, hey, are

Larissa Heise (27:54.049)

Are we missing the core need? Are we only meeting part of the core need? Sometimes people are only addressing part of the need. And so sometimes the other part, if, to think of a good example, if I want to do something because, like I want connection with another person and it's a sensory need, if I'm trying to teach a different skill and I don't hit on both of those things, again, people find a way to get their needs met.

so sometimes if it's like happening frequently or rapidly, it's not working. might say, Hey, let's, we must be, we might be missing something. Let's really kind of think about this. But if it's like, Hey, this has been working for a while. More often than not, something has changed that we haven't caught on to. and if we miss it, then we might have to just evaluate, reevaluate from the beginning. That's definitely happened to, yep. We're all, we're all changing people. Right. So.

Lola Dada-Olley (28:51.73)

Yeah. So could you tell us a little bit about those use cases that made you want to go back to the drawing board? What did they have in common that made you think, OK, let's go back to the Genesis? I'm just curious.

Larissa Heise (28:52.673)

gonna... it might happen.

Larissa Heise (29:08.525)

Can you repeat your first part of your question? so sorry.

Lola Dada-Olley (29:11.434)

no worries. So along those lines, you said there were occasionally there'll be a use case where you now have to go back to the drawing board and kind of reevaluate. what do those maybe small -ish cluster of cases look like? What do they have in common that makes you think, OK, let's go back to the genesis and kind of figure out what was going on.

Larissa Heise (29:26.178)

Larissa Heise (29:40.194)

A lot of the individuals where that is happening, I think there's usually a, there's a trend, there is a trend of like a couple of things that, that may be going on. One, the most common one is we strayed from the plan. I will say of like, and we just didn't realize it, like people, or they tried to do things, change things too quickly. So that one's usually something like as, as a professional, we're able to catch.

Somewhat quickly, want to say. Other times, everybody's on point. Everybody's like, no, we are doing this. We're consistent. We loved the plan. We wish we could still do the plan. And a lot of times with those individuals, there's co -occurring needs that are often happening that we want to evaluate the whole person. is complex. There's different levels to it. when we go back to the drawing board, we look at.

Lola Dada-Olley (30:38.226)

very.

Larissa Heise (30:42.999)

How are they medically? Has anything medically changed that maybe they can't communicate with us? We get pretty detailed. I won't get it up, but like eating habits, you we were talking about sleep a little bit earlier, right? The sleep, bowel movements. I had an individual who didn't have vocal communication, had dental issues.

that nobody knew about for some time until we were kind of going back to the drawing board and ticking off the boxes. Have you been to the dentist? Have you been to the your pediatrician? You know, have you gotten like, you know, and when we were kind of going back and checking through, yeah, he was having a lot of dental issues and in a lot of pain that he couldn't express and we were able to get that need supported and, you know, re -stabilizing. sometimes it's a matter of like,

going back to the drawing board, yes, with behavioral intervention, but sometimes just like the whole person of like, let's really kind of evaluate everything going on and seeing what we might be missing. you know, sometimes families get disheartened, right? Because that can be frustrating, especially when you're trying to help your loved one, but at the same time, like...

What I've seen family see was they learn from that too. So that next time, if there's a next time they're like, we're checking on that. Like we recognize this looks similar to that. Like it might be related to pain. We're going to get, you know, things figured out here. And then, you know, we, do better when we know about it, right? But like sometimes we have to start from the beginning.

check through and say, what are we, what are we missing here?

Lola Dada-Olley (32:38.962)

For parents of neurodivergent children who may be struggling with things like transition, so moving from a preferred activity to something that's non -preferred or from one setting like school to another one like home, what strategies do you have them consider?

Larissa Heise (33:01.869)

Fair enough. I always qualify this. always say, depends on your kid's needs, what's going on, right? What the need is there because sometimes transitions can look different for different reasons, right? Like we can have the same behavior from one child, I already kind of touched on this, same behavior from one child to another and completely different need that might need to be met in those moments. So I always say like,

Lola Dada-Olley (33:09.775)

Larissa Heise (33:31.389)

know, when we chat about strategies or things, always kind of have to go back to that, like, what need is there? I would say there's always like some general strategies that I think can work for a lot of different kids or individuals. Because we do know that like transition and change can be like, just a difficult thing for a lot of autistic individuals, right? So I usually say like, prepping.

having conversations about what to expect with those transitions. And there's some individuals where having too much prep can be stressful and having not enough. So again, depends on the needs of the person you're working with. But I think clear communication about what to expect. If they're able to vocally engage, having the conversations about is there anything that you're.

Lola Dada-Olley (34:08.356)

Yeah. Yeah. Yeah.

Larissa Heise (34:25.579)

not sure about or like that you're thinking about that would be helpful is visiting in advance or like, is that something that can be like if we're going back to school or if we're having big transitions, can we visit somewhere prior? I always tell families to like, don't be afraid to, especially if they're in a school setting or an educational setting to like help prepare the school team too. like,

How do we have conversations with our teams to make sure that we can support the individual in any way we can? I think sometimes families aren't sure what to talk about in those meetings, but it's really just like, how can I help them prepare in those moments? But yeah, like obviously transitions me a lot. I'm thinking about school for some reason, but even just at home, just.

you know, providing clear expectations of like what the transitions will look like or when they're going to occur. And like also just kind of giving alternatives or supports if that transition is difficult. Like what do we do if it becomes overwhelming? Like sometimes we're like, it's going to be successful. It's going to be great. This is what it's going to look like. I love it. I love the positivity. But sometimes we also got to say like,

Hey, if this is a lot, this is also what we can do. Like this is what's gonna happen if we need a break or like this is what you can do if you need some time. Yeah. So.

Lola Dada-Olley (35:55.782)

Yep, life be life and, Because life be life -ing and you have to be ready for as much as you can be ready for, I totally agree. For people looking for a licensed professional who can either help them individually or help their loved one develop some of these customized

Larissa Heise (36:11.253)

Yeah. Yeah.

Lola Dada-Olley (36:23.065)

You know, we've talked very generally, obviously, but those looking for more customized strategies for their own unique situation, how would you suggest they get started?

Larissa Heise (36:34.957)

So this is a fun question.

Larissa Heise (36:41.629)

This answer is going to sound terrible, but it's real life. The first thing I usually tell people to do is like, or ask them is what insurance do you have? I know that sounds so silly, but like, and it sounds so like callous to start there sometimes, but like that is how I direct people where to start. Because if, if you have one type of insurance versus another, you're going to start different places. So what I usually say is dependent, like,

Lola Dada-Olley (37:01.511)

Larissa Heise (37:09.995)

regardless of your insurance type, you know, cause obviously we're chatting with a lot of people here. Usually I say, figure out what your insurance covers first and foremost. If you're like, I don't even know, like, Larissa, I don't even know what I need to even figure out what my insurance covers, which you know, fair. I usually tell people, start with a psychological evaluation. ask about that. Ask your insurance. you cover, cause those things can get pricey. And so I want to help people understand that like,

If there's barriers to accessing those, I'd rather you know first thing than be surprised after you do them. Schools are also a resource too. If you're looking for in school supports versus outside supports, those are different. So I always tell people that school support is something you can access regardless of insurance. are things that are, there's different rules, different ways to navigate that.

Lola Dada-Olley (38:02.15)

Larissa Heise (38:06.325)

But if you're looking for outside of educational settings kind of support, let's start with your insurance. And also if you're like, I don't even know what to ask. I usually recommend a psychological evaluation only because if you don't know what you need, if you're not sure, they will look at that. They will make recommendations. Now, if you know, you're like, you know what? I don't need to do that. I want.

I'm looking to get speech, I'm looking to get OT, I'm looking to get all those things. You're welcome to want to get, I say check insurance, but also like talk to your pediatrician or doctor to start if that's helpful. They might be able to give referrals. You can call your insurance company and say, hey, this is what I'm looking for. They can give you a list. And then a lot of states, like depending on where you're located, do you kind of have

resources for autism specifically that can also help guide you and guide kind of like your journey because I'm sure a lot of people who may be listening, understand that it is a journey. And navigating the world of providers is not always easy. I'm a provider and I find it difficult sometimes, but you have to kind of start

Lola Dada-Olley (39:23.623)

Larissa Heise (39:32.073)

Absolutely.

somewhere and a lot of insurance if you have like private insurance or commercial insurance they'll have some people who can help if you ask for them of like I want somebody who understands autism who can help me sometimes they're able to assign you somebody or if you you know if you have Medicaid you can go through your state and they often will have resource to help you navigate it too so I guess my takeaway is you gotta figure out your insurance which can be daunting

But don't be afraid to talk to the people who you already do trust too, if you have a doctor and you have people you can go to and they will help you navigate through the system. And it isn't always easy, but...

it also, if like that's what you need, or if that's what you feel like you or your family needs, then it's worth figuring out because I'm all about kind of the conversation we had earlier of like, at like you had mentioned advocacy, right? Like these are things that while they're frustrating, they can be frustrating. I want people to know or feel confident how to get their needs met. And even if it means learn how to call insurance and figure out all this.

Lola Dada-Olley (40:46.254)

Yeah, honestly. Honestly, and this is for... No, it's actually not, I know you said it sounds like a callous answer for our US -based listeners, it's not a callous answer because the insurance is a very, very interesting, complicated, frustrating maze that one has to deal with in order to get...

Larissa Heise (40:46.303)

I want people to feel like I know what to do. Yeah. I know that was, I was like.

Lola Dada-Olley (41:15.354)

services sometimes. I've heard of all types of situations. I've heard of parents or individuals literally not just moving to a new state, sometimes traveling to another country just to get some of the evaluations needed. So for US -based listeners who are using private insurance, that is absolutely the way to go. Because otherwise you will end up with an

Larissa Heise (41:35.596)

Lola Dada-Olley (41:44.914)

$10 ,000 bill that you didn't know was coming. That's what happened to me and my husband. That's in a previous episode. That's back in season one for those who are interested in learning that fun tale, navigating healthcare in a brand new state. So it's very, very true. If you're a US -based listener and you have private insurance, please call your insurance provider first.

Larissa Heise (42:03.201)

Larissa Heise (42:08.257)

Yes, yes. I wish I could, but that's literally what I have to start. Every time people are looking for services, like through our organization, that's the first question I have. And then I can best direct you of like how to contact and who to chat with and things like that. But I don't like when people are surprised. I'd rather them understand the barriers that they're about, like if there are barriers with their insurance, like I'd rather them know to start and then make decisions from there.

Lola Dada-Olley (42:20.242)

Larissa Heise (42:37.355)

rather than like you said, be surprised. don't want people. That is not my goal. And you know, there might be resources available. Like if your insurance doesn't cover, there could be. Yeah. Yeah. So that's my real life. Start with insurance.

Lola Dada-Olley (42:40.188)

Yep.

Lola Dada-Olley (42:47.687)

Depending on where you live. Absolutely.

Lola Dada-Olley (42:58.742)

with insurance. Larissa, thank you. Thank you for making time today. Much, much, much appreciated.

Larissa Heise (43:08.695)

Thank you so much for having me.

Lola Dada-Olley (43:12.103)

Be well.

Lola Dada-Olley (43:17.094)

Yeah, I learned from...

00:43:18

Apr 1, 2025 12:0 PM

00:00 Introduction to Alero's Journey

Adaptability is crucial in parenting decisions.
Insurance can complicate access to necessary services.
Therapy can provide essential life skills for children.
Decisions should be made with long-term outcomes in mind.
It's important to avoid catastrophizing decisions.
Building a supportive community is vital for families.
Reintegration into school requires careful planning.
Regular communication with educators is essential.
Learning from others' experiences can guide decision-making.

Chapters

01:54 Deciding to Withdraw from Special Education

10:22 Evaluating Alero's Progress and Needs

19:19 Reintegrating Alero into School

25:28 Building a Supportive Village

30:06 Lessons Learned and Future Considerations

Transcript

Lola Dada-Olley (00:01.395)

Welcome, welcome everyone to the Not Your Mama's Autism podcast. I am back yet again with the hubster, the hubby, Tosa Ali. We are talking about a not so light topic about our daughter's reproductive healthcare and the decisions we are starting to make for her in hopes of

her living the highest quality of life possible. For those new to the podcast, we have an 11 -year -old daughter who's minimally verbal, on the autism spectrum, and intellectually disabled. So, this episode will walk through some traditionally seen as uncomfortable topics, things like periods, things like cramps.

things like talking it through as a family for a child who has communication challenges. This is naturally a difficult conversation, whether or not your child can traditionally communicate or not. So, our daughter has a history of some sensory challenges associated with the way her autism manifests. So, once she turned 10,

And we knew that that next phase was right around the corner. We had to really sit down and think about the type of options she would have, not only based on her autism, but quite frankly, based on her family history that we know of at least when it comes to reproductive health, our family on my side, at least part of my side of the family, we've had a history of fibroids, PCOS, difficult periods.

how could that potentially look in a growing child who will one day become a young woman who may not be able to communicate things like pain in a traditional way. So, we are pulling back the covers on this so you all could see some of the conversations my husband and I have had, some of the conversations we've had with her healthcare providers and hopes.

Lola Dada-Olley (02:24.707)

that we help other families like ours and not just those families but the health care providers that are part of those villages as well. So with that in mind, let's get started. So, this all started when she was 11 now, is it when she was nine going into 10 or maybe 10?

Tosan Olley (02:51.336)

talk about the endocrinologist. So, we did a blood test on Alero and we sat in her office and she told us that based on the blood tests, puberty is amongst us.

Lola Dada-Olley (02:51.971)

Tosan Olley (03:08.648)

I think we rewind a little bit. Yes, we did the blood test, but we went into that conversation with the endocrinologist with a little bit at the back of our head that one study showed that puberty seems to be hidden earlier.

And even though she was nine going on 10, it felt like, you know, this generation and the generation before and on, you every generation seems to be hidden a little bit earlier. We had noticed some changes in our body. We were trying to make the determination. it, you know, just chubby baby versus, you know, development?

Lola Dada-Olley (03:50.211)

Yeah.

Tosan Olley (04:00.93)

So we went in with a.

We think we need to confirm, we need your help, we need your input and what have you. So that when she came, when the chronologist came, it was less like, shock. was more like, it's true. know, puberty, know, baby girl is now.

Lola Dada-Olley (04:06.413)

Yeah. Yeah.

Lola Dada-Olley (04:26.935)

Yeah, puberty is among us.

Tosan Olley (04:34.22)

baby woman? Baby lady, not wife woman?

Lola Dada-Olley (04:36.191)

Gosh, baby, baby. No, baby, baby. Yeah, definitely not quite woman, but she's on the path. She's definitely on the path

Tosan Olley (04:46.439)

Yeah, and you know, my head, I had a thought in my head that half the fighters watching this just ran for the exit.

Lola Dada-Olley (04:57.845)

Yes, but it's definitely a topic that think dads need to be in on as well. It's really important.

Tosan Olley (05:04.782)

Yeah. And I also think that's, or maybe this is wishful thinking, but I think proven by the dads we have around us, you know, in our ecosystem that.

This is less taboo for our generation, I think, than it was, you know. Yeah.

Lola Dada-Olley (05:26.859)

Yeah, I'm hoping so and I think so because I remember when I had my first period I went to my dad because my mom was working she was at home and my dad literally said, you can tell this man it looked like a deer caught in headlights like just like no and he said go go and find your mother go and find your mother. Okay.

Tosan Olley (05:35.894)

You

Tosan Olley (05:48.238)

Yeah, so once the endocrinologist confirmed that at least biochemically.

she had achieved puberty. Physiologically, we knew it was just a matter of time for the body natural processes to begin. And in conversation with Endo, correct me if I'm wrong, she gave us the referral to the gynecologist that...

Lola Dada-Olley (06:25.143)

Yes, yes, yes, she did.

Tosan Olley (06:29.554)

was not just a pediatric gynecologist, but was a pediatric gynecologist that had specialization in kids on the spectral neurodivergence and on and on and the little nuances. Yeah.

Lola Dada-Olley (06:40.205)

Yes, all types of neurodivergence, including intellectually disabled girls, which was very, important to us.

Tosan Olley (06:52.576)

and not as common as we, you know, which is a topic for another podcast, why that skill set that would help newer diversion girls doesn't seem to be as common as I quite frankly should think it should be. So it's the ecosystem connecting to the next chain.

of command and connected to the next link on the tapestry of care that we sought to build. And as a dad, think my mindset was a bit of a...

Tosan Olley (07:42.51)

she's gonna grow fast, right? B, I need to get my workout on.

because I'm going to be bodyguard to this little lady for a little bit. So, I need to get my knees stronger and see, you know, the challenges of her physical care. You know, we've been doing this for a little bit for her. So, what's another bodily fluid added to the mix?

Lola Dada-Olley (08:23.738)

I remember the endo telling us, because you alluded to it, the endocrinologist telling us something to the effect of, well, it could happen anytime from now within the next two years, according to this blood test. And, you know, me being who I am, I was just like, OK, we got up to two years, could certainly be less.

Tosan Olley (08:34.337)

Mm -hmm.

Lola Dada-Olley (08:46.071)

thinking through what that can now look like when it comes to just overall prep care to get to that day. Thinking through, you know, with this child with this history of sensory challenges. So, we went to her ABA therapist, her occupational therapist, also her speech therapist saying that this is the beginning of the passing of the baton to this next phase of life. So, we know we have

Tosan Olley (08:49.548)

Mm -hmm.

Tosan Olley (09:06.158)

Mm -hmm.

Lola Dada-Olley (09:16.041)

a child who doesn't traditionally communicate so on our iPad let's really focus on how she can communicate pain and where that pain may be in a more targeted way just to get ready so she could be able to at least use her iPad and tell us pain and hopefully one day tell us pain in my stomach so we can know that there are menstrual cramps coming maybe and help us better serve her...

Tosan Olley (09:27.022)

So that would be the work of speech therapy and a mix of speech and ABA. For OT, it would just be starting to get her body ready to certain feelings down there, like when it comes to things touching. So, getting used to maxi pads, getting used to period panties, and just being okay with the feel of that, because it's a very different feel than her.

Tosan Olley (09:41.218)

Mm -hmm.

Lola Dada-Olley (09:44.611)

Tosan Olley (10:02.508)

Mm -hmm.

Lola Dada-Olley (10:12.887)

diapers or her underwear and reinforcing that, reinforcing personal hygiene now and thinking of this life change and thinking how it could affect her, just her body changing and just the sight of blood. We were worried about what that could mean for her. And so a lot of the next year was talking her through that.

Tosan Olley (10:17.347)

Reinforcing hygiene. Yeah.

Tosan Olley (10:32.866)

Mm -hmm.

Lola Dada-Olley (10:41.563)

providing her therapists with maxi pads and period panties and talking through with her caregiver therapist at home, pointing to the iPad, talking about pain, just so that she can get used to what the word for pain is and when it should be invoked more. We did that for a good year.

And then earlier this year, again in preparation for that, we went to the gynecologist to talk through, when that day comes, what does that now look like from a gynecological perspective based on the medical history we are aware of? And he helped us talk through some options.

Tosan Olley (11:34.408)

Yeah, and I think it's, you said it, you know, when we make decisions based on what we know, with the geographical financial constraints, and we did, we've run our lives that way for a long time, you know.

the kids that really forced that mindset. So that we're not caught unawares. We're not unprepared for what is in this case an eventuality. So, when we went to the gynecologist, the conversation was...

more.

here is what we are thinking, you know, based on our research, you know, based on history, based on family history, based on what we know of allelic sensory, baby girl sensory issues and, and what have you. Here's what we are thinking, here are the things we need to consider, here are the things we need to be aware of, we have no idea what our pain thresholds are like.

We can guess that they're not because of our sensory issues. Everything is magnified. So here's what we have as we do it, the full set of facts. Game plan for us. Help us walk through this. This is where we bring in an additional variable of the doctor's experience, specifically with

Tosan Olley (13:29.15)

children like ours to walk through exactly what we need to start putting in place if we had not thought about it. You know, one of the things I think that came out of this, maybe wrong, was not just the iPad of showing that she has pain, but being able to communicate something as vague as discomfort, right, or I'm sad.

Lola Dada-Olley (13:54.647)

Yes. Yes.

Tosan Olley (13:56.982)

You know something but in Vegas feelings if she can't or I need a break exactly so took that information, you he he gave us that information and essentially gave us the game plan and the game plan was You know a lot of things that we're already doing getting her used to

Lola Dada-Olley (14:01.023)

or I need a break.

Tosan Olley (14:25.778)

wearing the period panties even though there's no period so that when she eventually has to wear the period panties, it's not like, what is this, Embedding with each therapy provider stacks of female hygiene products, you know, like stock up for when the Clarion call goes out. Then everybody's like, go, go, go, go, go.

Lola Dada-Olley (14:44.819)

Yep.

Lola Dada-Olley (14:48.395)

When that time comes.

Tosan Olley (14:55.118)

know, military terms. And for him, he said, immediately it shows up.

Lola Dada-Olley (14:55.383)

Yep. Yep.

Tosan Olley (15:05.13)

And there are medical decisions that he had already put into her chart. So that when we actually called to get him, we got his nurse, know, a fast order, there we go. But it's all a, this is an eventuality.

Lola Dada-Olley (15:23.543)

you're fast forwarded, you're fast forwarded. You're fast forwarded.

Tosan Olley (15:34.188)

what does preparation look like so that when it's time to go, we are not at that point with those emotions. You do not want to be trying to figure out what's next at that point, know, figure it out where you are, quote unquote, clear headed. Because the emotions of it has come. It's a different ballgame.

Lola Dada-Olley (15:56.269)

emotions are very real. So as we talk to you as the proud parents of our baby girl, and I'm trying to say this without breaking down because Tosa talked about emotions, but this past week it happened. The day finally came and we got the eagle finally landed and I was at work and I got Tosa and I were both at work.

Tosan Olley (16:15.679)

eagle landed.

Lola Dada-Olley (16:25.439)

in the office, in the physical office, and we got two calls and quick succession from Alero's teacher. And then I tried to call her back and I just knew. The mother's intuition, I just knew, I just knew. And I instinctively went to the email and it was something cryptic like, there's an update regarding Alero, please call me back. And I forwarded it to Tosan and I was like, Tosan, it's happened. And he writes back.

Tosan Olley (16:49.942)

you

Tosan Olley (16:54.014)

Yeah. Literally. Literally. That was my two-word response. And right at that time, the teacher called me and she actually caught me. And she's like, Mr. Ali, I just wanted to let you know, Alero's period has come. And we changed her.

Lola Dada-Olley (16:55.441)

shit.

Lola Dada-Olley (17:02.187)

And this is... Yeah, that was a two -word response!

Lola Dada-Olley (17:20.606)

Oof.

Tosan Olley (17:22.52)

to because again, we embedded female hygiene products everywhere. We change into the period pants that you left. And I think I was actually about to walk into a meeting. Yes, I was about to headline a panel at work. And I, my mind was like, be damned. I literally told her I'm on my way.

Lola Dada-Olley (17:35.949)

You're about to be - a big panel! You're about to

Tosan Olley (17:52.426)

And she goes, no, no, no, no, we don't need you. We're just letting you know. Which back to the decisions we made as to the particular ISD and the majority of the teachers and the ecosystem that we chose, it's for so that very reason that the teacher can go, no, no, no, we don't need you. We got that. We just let you know. You know? And I...

Lola Dada-Olley (18:18.882)

Such a blessing, such a blessing.

Tosan Olley (18:20.972)

did my panel and everybody, nobody on that panel actually.

Lola Dada-Olley (18:23.147)

And nobody had any idea what we were experiencing. And the funny part is, as he was doing his panel, I was prepping for a major presentation at work, a major presentation. It just shows that life will always continue to life.

Tosan Olley (18:41.214)

Life doesn't ask for permission to life. So that was that auspicious day.

Lola Dada-Olley (18:44.585)

It really doesn't. It does not at all.

Lola Dada-Olley (18:54.763)

Yeah, so to land that plane though, so in the midst of these very busy careers and life, life being and our daughter, you know, moving and officially moving into this new phase. We were talked, we found a minute in the midst of I think you had finished your panel, then you finally called me because I was playing phone tag with the teachers. I didn't reach them yet. You called me to confirm.

Tosan Olley (19:17.432)

Correct.

Lola Dada-Olley (19:24.757)

And you said, our baby girl is not a baby anymore. okay. It's true, she's not.

Tosan Olley (19:29.504)

Hehehehehe

Tosan Olley (19:34.746)

And gave you also feedback that teacher was like, she's fine. She's laughing. She's giggling. She's happy. And she's okay. We'll see you when you come pick her up.

Lola Dada-Olley (19:48.804)

Yeah, yeah. And then we, and then you and I talked and I said, you know what, our plan is in place for a reason. Let's call the doctor, let him know what happened. And we implemented our plan, he added notes. And it's a reminder, and this is not political.

Tosan Olley (20:09.688)

Mm -hmm.

Lola Dada-Olley (20:14.531)

We don't want it to be the following statement I'm going to make here, but there are use cases for birth control and for other birth control devices where it has nothing to do with reducing pregnancy. It's literally to increase the quality of life of the patient separately from even thinking about things like pregnancy. I mean,

Our daughter is cognitively a toddler and physically a preteen girl. So, we have to look at things, looking through the eyes of parents who have to think about her long -term sensory needs to regulate her body chemistry in a way that can increase the quality of her life for the rest of

Tosan Olley (20:58.218)

to regulate her body chemistry. That's it.

Lola Dada-Olley (21:08.867)

because she's just starting this journey. It's 30, 40 year plus journey before she would even touch menopause. These are the type of decisions families like ours have to make. And without access to this, it can hurt her. It can stomp her development. And I'm not even talking physically, but mentally for her future too. People don't understand.

Tosan Olley (21:16.525)

Mm -hmm.

Tosan Olley (21:36.078)

Yeah, because for us, for her, rather...

Quite frankly, a lot of times with therapy is you're trying to create an environment that makes it most optimal for her to learn or to acquire. Let me use the word acquire, to acquire skills. And anything that distracts from her body's brain power, energy that would have been better served, acquiring those skills.

It's our job and the medical ecosystems jobs to mitigate, right? You know, there's a point in our life where high environmental allergies were off the chain and we again, we're blessed to be in position. We, if you remember, bought like air purifier filters for the classroom, right? You know, to.

trying to eliminate anything that would diminish her ability to acquire skills. So in this, clinical as this would sound, this case, the medical, what's the term for it? But the medical decisions and solutions that we talked through with her doctor was in order to ensure that a child that is not equipped on her own to deal with the sensory, physical, mental, emotional swings and whatever the case may be.

Lola Dada-Olley (23:23.719)

emotional

Tosan Olley (23:32.422)

and knowing that does not have the ability to acquire those skill sets before the time of the Eagle King, right? What can we do to come alongside her to make sure she's, if she is equipped or the environment is equipped to aid her in facing those challenges, because we are not going to be able to, you know, this is a challenge that

Nobody but her can bear. She's going to have to bear it. It's her body. So, it was gratifying seeing the results of decisions made a year or two ago from a medical perspective, from a school district perspective, almost a decade ago, it was gratifying seeing those. Exactly right, was gratifying seeing all of those kick in and go, OK, we act, you know, it played out as we thought it would play out.

Lola Dada-Olley (24:31.615)

a private therapy perspective as well.

Lola Dada-Olley (24:44.813)

so far.

Tosan Olley (24:45.846)

so far where we were making those, putting those decisions in place. And she is, as at the time of this recording, has weathered her first storm.

Lola Dada-Olley (24:50.317)

Yeah.

Lola Dada-Olley (25:03.137)

Yes, yes, yes. She has like a champion. And in fact, and even one time in school, she pointed to her stomach and told her teacher pain. And we think that was tied to the menstrual cramps. So, the fact she was even able to communicate that is just, it's such a blessing. It's such a win for our family. And you know, one day at a time, one day at a time.

Tosan Olley (25:17.09)

Yep.

Tosan Olley (25:21.102)

That's huge.

Tosan Olley (25:30.722)

Yeah, and we.

Tosan Olley (25:35.48)

This is not the end of the reproductive journey for her, right? Obviously. And we're in tight consultation with her medical ecosystem, tight consultation with her therapy ecosystem, with the school, with our faith -based community. We're in tight consultation with our...

Lola Dada-Olley (25:56.589)

Yes.

Tosan Olley (26:02.71)

I guess for lack of a better term, life mentors, folks who have a daughter who is years ahead of us, of ours, so that, we're not trying to recreate the wheel. A lot of this is, what did you do?

How did it turn out? It's not a guarantee that it will turn out exactly the same for our daughter, but it's information. It's counting the variables. Then we make a call. There you see how it pans out. Then something else shows up. You do the same process. You make a call. You see how it pans out. With the knowledge that this is a marathon, and we are going to be making, having to make those calls for

decades in order to.

Lola Dada-Olley (26:53.219)

Absolutely.

Tosan Olley (26:57.984)

set her up for the most optimal life that we can set her up for.

You know, I am officially the dad of what's the term, pubescent teenagers. If anyone is wondering why to create my beard has doubled. Ta -da!

Lola Dada-Olley (27:15.267)

Pray for us y'all, pray for us

Lola Dada-Olley (27:27.905)

You

Tosan Olley (27:34.498)

That's how it is.

Tosan Olley (27:41.154)

So.

And the other time, you know, the story continues, the story continues to unfold. But we celebrate.

The wind.

Tosan Olley (28:04.718)

her first storm was able to be weathered as well as it possibly could have been.

A due to the grace of the Lord Most High and medical ecosystem, medical planning, therapy planning, putting in the guardrails.

Tosan Olley (28:40.366)

Pre -decisioning. Pre -decisioning. Spending a lot of time in the pre -decisioning so that when the decisions needed to be made, it was a... duh. Like, you you just, you can move a little bit faster.

Lola Dada-Olley (28:42.667)

decisioning. Yes. Yes.

Tosan Olley (29:01.62)

And we, we, I'll look at what the journey continues.

Lola Dada-Olley (29:06.999)

Yes. Yes.

Tosan Olley (29:12.066)

Cool beans.

Lola Dada-Olley (29:13.827)

Until next time everyone.

00:29:07

Jan 1, 2025 1:0 PM

In this episode of Not Your Mama's Autism Podcast, host Lola Dada-Olley speaks with Annette Addo-Yobo, the first immigrant-born Miss Texas, about her journey from Ghana to the U.S., her advocacy for autism awareness, and the importance of representation. Annette shares her personal experiences as a sibling caregiver, the cultural stigma surrounding autism, and her aspirations to influence policy and support families navigating the challenges of autism. The conversation highlights the need for better resources, early intervention, and community support for families affected by autism.

Advocacy in Action: A Talk with Ms. Texas 2024 Annette Addo-Yobo

Takeaways

Annette's journey from Ghana to becoming Miss Texas is inspiring.
Representation in media and pageantry is crucial for marginalized communities.
Cultural stigma around autism can hinder family support and understanding.
Advocacy is a lifelong commitment, often born from personal experiences.
The SPAR Project aims to bridge gaps in autism awareness and resources.
Parentification can significantly impact the identity of sibling caregivers.
Mental health support is essential for caregivers navigating their roles.
Early intervention can change the trajectory of a child's development.
Advocacy in Washington, D.C. can lead to meaningful policy changes.
Community support is vital for families affected by autism.

00:48:55

Dec 11, 2024 1:17 AM

In this episode of Not Your Mama's Autism podcast, host Lola Dada-Olley engages her son Fela in a heartfelt discussion about the transition from middle school to high school. They explore the various high school options available, the importance of extracurricular activities like band, and the challenges that come with academic rigor. Fela shares his personal experiences and offers advice to other students facing similar transitions, emphasizing the importance of hard work and resilience. The conversation highlights the growth and development that comes with navigating educational choices and personal interests.

Navigating the High School Transition: A Talk With My Son

Takeaways

Choosing high schools is a significant decision for students.
Middle school serves as a preparatory phase for high school.
Extracurricular activities play a crucial role in student life.
Students should consider their interests when selecting a high school.
Academic rigor is important, but students should not fear challenges.
Transitioning can be daunting, but support from family helps.
It's normal to have concerns about moving to high school.
Students should embrace hard work as part of their education.
Making new friends is a key aspect of transitioning to high school.
Reflecting on past experiences can provide valuable insights for future transitions.

00:17:55

Nov 26, 2024 2:40 AM

Workplace Neuroinclusion Strategy: Some Lessons Learned

In this episode of Not Your Mama's Autism podcast, Lola Dada-Olley interviews Danielle Meadows, an executive director at JPMorgan Chase, about the importance of disability employment and the initiatives taken by the Business Solution Team (BEST) to promote neuro-inclusion. They discuss the evolution of the BEST program, common misconceptions about disability inclusion, the challenges faced in the employment landscape, and the significance of public policy in supporting individuals with disabilities. The conversation highlights the success stories of employees and the role of job coaches in fostering an inclusive work environment.

Takeaways

Disability Employment Awareness Month is crucial for promoting inclusion.
The BEST program focuses on neuro-inclusion strategies globally.
Misconceptions about disability often hinder employment opportunities.
Transportation remains a significant barrier for individuals with disabilities.
Public policy needs to adapt to support working individuals with disabilities.
Job coaching is essential for success in the workplace.
Collaboration among organizations enhances disability employment efforts.
Recognition from institutions like the UN validates the program's success.
Success stories demonstrate the potential of individuals with disabilities.
The program has grown significantly since its inception in 2019.

Chapters

00:00 Introduction to Disability Employment Awareness Month

05:11 Misconceptions About Disability Inclusion

09:29 Recognition and Growth of the BEST Program

12:33 Challenges in Disability Employment

17:26 The Importance of Public Policy

21:46 The Role of Job Coaches

26:54 Success Stories and Business Outcomes

00:32:17

Oct 7, 2024 12:0 AM

Reintegrating Our Daughter Into School Life

In this episode, Lola Dada-Olley and her husband Tosan discuss their journey with their daughter Alero, who is on the autism spectrum. They share their decision-making process regarding Alero's education, including the challenges of navigating special education services, the impact of the pandemic, and the importance of adaptability in parenting. They reflect on their choice to temporarily withdraw Alero from school for therapy and the subsequent decision to reintegrate her into a supportive school environment. The couple emphasizes the significance of building a supportive community and learning from others' experiences in similar situations.

00:34:09

Sep 24, 2024 3:0 AM

In this episode, Dr. Kim Floyd, a professor of special education and an innovator, discusses her evolution in the education space and her role in standing up a center focused on assistive technology with people with disabilities. She shares her journey into special education, the development of a multidisciplinary approach, and the importance of trauma-informed practices in education.

Back To School: Embracing Technology and Student-Centered Learning

Dr. Floyd also highlights the unique challenges and strengths of rural communities in special education and the work of the American Council on Rural Special Education. She discusses the Center for Collaborative Assistive Technology Education Lab and the exciting projects coming out of the lab. Finally, she explores how assistive technology can level the playing field in education and therapy.

The conversation explores the importance of assistive technology in education and the challenges faced in implementing it. It highlights the need for personalized and inclusive classrooms that cater to the diverse learning needs of students. The role of AI in leveling the playing field is discussed, acknowledging both the benefits and potential drawbacks. The conversation also emphasizes the importance of historical and cultural awareness in education and the need for teachers to be resilient, empathetic, and adaptable. The American Council of Rural Special Education (ACRES) is mentioned as a resource for further information.

01:13:03

Aug 31, 2024 10:0 PM

Clean

Addressing Daily Life Challenges with Revolutionary Tools: A Talk With Nadia Hamilton

Growing up alongside a sibling with autism can transform your life's blueprint in the most unexpected ways. in this episode, we're joined by the remarkable Nadia Hamilton, who shares the touching saga of her brother, Troy, and how his journey on the autism spectrum has awakened a legacy of empowerment and innovation. Nadia's candid recount of the joys and hurdles they faced together unfolds into the creation of a transformative tool - Magnus cards - that now aids individuals with autism and/or cognitive disabilities to navigate the complexities of daily life with greater independence. Our conversation is a celebration of sibling love and the spirit that can give rise to social entrepreneurship with a profound purpose.

As you tune in, you'll be captivated by stories that not only pull at the heartstrings, but also spotlight the monumental shifts in accessibility and inclusivity championed by visionaries like Nadia. Discover the compelling impact of the Magnus Mode app, designed to provide free, visual, step-by-step guides for those in the neurodiverse community, and learn how the Disability Experience training program is reshaping perspectives in corporate corridors. This isn't just an episode; it's a heartfelt tribute to Troy and others like him, who inspire a world that embraces every spectrum of human diversity with open arms and minds. Join us for an episode that weaves a narrative of hope, understanding, and the tangible change that comes from one sister's unwavering devotion.

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00:37:20

Feb 12, 2024 3:0 PM

Healthcare in America: New Year; New(ish) Expenses

Every January, my husband Tosan and I brace ourselves for the impact of the 'January reset' on our family's finances. As parents of a child with complex medical needs, we're no strangers to the avalanche of medical bills that come with insurance deductibles and out-of-pocket maximums starting anew. Our latest episode offers an intimate conversation where we peel back the curtain on the financial challenges that families like ours face, diving into the intricacies of insurance policies in Texas, and the relentless vigilance it takes to ensure our daughter's healthcare needs are met.

Join us for a heart-to-heart about the proactive financial strategies we've put in place, like leveraging Health Savings Accounts and planning for a multi-year safety net. As we exchange stories and strategies, Tosan and I reveal how we've navigated the stormy seas of healthcare costs and even seeking healthcare grants and exchanges when money was tight. We aim to empower and offer solace by sharing our journey, reinforcing the importance of resilience and the strength found in taking it one day at a time.

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00:22:01

Jan 30, 2024 7:0 PM

2023: Our Longest, Yet Shortest, Year To Date

Our 2023 year in review episode is here. We discuss the ups and downs that is/was 2023, including a life changing family trip to Barcelona, an ice storm that prevented travel to our daughter's therapy, a short term caregiver crisis, the myth of work-life balance and so much more.

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00:26:52

Dec 21, 2023 2:0 AM

In this episode, my husband, Tosan, and I have a conversation about the transition we've made and are making into the start of adolescence. Our kids, a boy and a girl, are now both pre-teens and our daughter has an intellectual disability. We talk about the special considerations we have to think through and make as we raise neurodivergent children who are undergoing a new life phase. One day at a time.

This episode is also available in video form on YouTube.

Redefining Success For Yourself After Trauma : A Talk With Addis Gonte

In this episode, I speak with Addis Gonte, Non-Profit CEO and Disability Inclusion Advocate. We talk about how a car accident changed his life, resulting in traumatic brain and spinal cord injuries. We also speak on how his life changing accident led him on a new path to founding a non-profit, called Able Mindset, and many lessons learned along the way.

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00:38:40

Nov 29, 2023 2:0 AM

Clean

"Tweendom", Puberty and Autism: An Interesting Cocktail

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00:26:15

Sep 18, 2023 2:0 PM

Clean

Autism, Self-Advocacy, Therapy and Everything in Between: A Talk With Janelle Johnson

In this episode, we speak with Janelle Johnson, a licensed marriage and family therapist, Founder of Bridges Family Life Center, PLLC , Mom, Wife and Self-Advocate. We talk about her own autism self-diagnosis, how she became a therapist, her own philosophy on "masking", her decision to eventually self-ID, raising an autistic child and her views on so much more.

As always, we appreciate the support. If you like what you hear, please share, subscribe and give our podcast a 5 star rating on Apple Podcasts.

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00:46:07

Aug 9, 2023 12:0 PM