Episode Transcript
[00:00:00] Speaker A: Foreign.
[00:00:09] Speaker B: The podcast for those who find themselves immersed in adversity and choose to write their story instead of having others write it for them. I'm Drew Duraney and I'm your host.
[00:00:21] Speaker C: Today's guest is Brilly Semenov. Brilly Semenov has been advocating for people with disabilities since 2004. Building upon her own personal experiences as an individual with disabilities, Brilly fights to ensure that all individuals are aware of the services that they are entitled to and capable of utilizing them to their needs to assist with their condition or conditions. Brilly assists caseworkers with pairing individuals receiving services to individual providing services.
Brillie also assists with finding and applying for funding and programming. It is her hope to find opportunities to spread her information across a wider area and help a larger audience.
Briefly, with her background in special ed, plus degrees in organizational development, Brillie is ready to consult with individuals or organizations that have questions about disability services and or disability in the workplace.
Enjoy the show.
[00:01:16] Speaker B: Brilly, how are you?
[00:01:18] Speaker A: I'm good. How are you, Drew?
[00:01:19] Speaker B: Doing all right. All right. So folks, so this is the first live in person from caving in to crushing it. So if we make mistakes, I'm not editing it out, but we, we're here at the it's like the Residence Inn by Marriott in Saddle River, New Jersey. Brilly Semenov is here. She's visiting in from Maryland because she's my kind of my consultant to try to help my son with special needs. So that's a little different beginning from, from our usual, the usual beginning is I always thank the person who introduced me to my guest.
And this is probably the third time I've had to thank Priscilla. So Priscilla, and I'll pronounce her last name correctly this time, Priscilla Leto, who happens to be the founder and owner of a non profit 501c3 called Mission Kids Success.
So thank you, Priscilla for introducing me to Brilly and we're looking forward to having brilliant here today. Really is an amazing human being and we'll go from there. So everybody, you know, when I, when I start this podcast, I always talk about how when we're young, we're taught that life is linear. Life is a straight line. If we do A plus, B plus C D is going to happen. And for the most part, life is linear until something happens, an external circumstance happens, comes in the way of one of those letters and changes our straight path to a more circuitous one.
When that happens, that means adversity has reared its ugly head. And when adversity shows Up. There's three types of women, all right? There's woman number one, who's got so many blind spots, she doesn't even notice that adversity. And she goes through life the way people told her to go through it, and nothing changes. I don't have woman number one on these shows. All right, Then there's woman number two. Woman number two sees the adversity, looks at it and says, that's a barrier.
I'm the victim. Everybody else is to blame. Life's doing it to me. I can't change anything. And so she doesn't.
And on her DeathBed, woman number two has a ton of regrets. I don't have woman number two on this show.
I have woman number three on this show. That's Brilly. Woman number three sees the adversity, has a heightened self awareness, and says, I'm sick and tired of being sick and tired. I'm going to do something different, take massive action and become a stronger woman on the other side.
So I'm going to ask you, Brilly, if you could reach back as far as you need to for that defining a moment in life, whether it was the tap on the shoulder, the whisper in the ear, or like, what I needed two by four upside my head, that really transformed you from the woman you were to the woman you are now and how that affected you personally and professionally. Would you like to share that?
[00:04:00] Speaker A: Sure. Well, thank you, Drew, for having me, first of all. And the thing that I want to elaborate is that when I was in middle school, in elementary school, going into middle school, I kept hearing the word no, no, no, no, no. And that people are making decisions for me, which I don't mind having support, but at some point, I like to make the decisions for myself, which unfortunately, unfortunately, I did not get that at first. All I heard is, no, no, no, no, no, that's not possible.
So I got tired of it and I turned no into a positive thing as, like, let me do my own research and prove that it could be possible for people with different abilities, regardless of their circumstances, to try new things and explore their opportunities.
[00:04:46] Speaker B: So you mentioned different abilities and, and what, what kind of different abilities have happened to you in your, in your life that these people were telling you, no, no, no, no, no.
[00:04:57] Speaker A: So for me, I grew up with a physical disability, which is also known as cerebral palsy. We call it cp. And it comes in different forms and shapes. Sometimes it affects people with speech, hearing or vision, or fine motor difficulties or some other shape or form. Some people depend on A wheelchair full time or partially. For me, it was a lot of fine motor and physical aspects where I needed support by other individuals. And sometimes maybe people meant well, but they were trying to be more on a safe side. But for me, it's like, I like to explore things. I don't stop my disability because I feel like if we don't try, we're not going to learn. So it's like people were telling me, oh, you should use a walk wheelchair versus a walker, or, you know, use this item versus this item. And I'm like, well, if we keep using the same thing, we're not going to learn it. So I was like, you know what? I wanted to work with kids. And for a lot of people, working with kids is not something that they do on a typical day with a physical disability. It's more like secretarial work. And because I'm the type of person that is outgoing and social, working behind the desk is not ideal for me. I like to be moving around.
So I had to not only prove to myself that I'm capable, but to prove to others that with accommodations and supports, individuals with disabilities can explore options that are there, willing to do, like working with kids, being a reading teacher or being a speech pathologist, or being a social worker, being an educator.
[00:06:29] Speaker B: Right. Well, you know, it's interesting because even we. And I like, I don't. I'm like you. The word disability, differently abled. There's all different terminology. But you're right, most of those people probably meant well and they're just not accustomed to working with people who have different abilities. Now with, with yours, your physical disabilities, people can tell. So right away there's a potential for them to make judgment and. Which is not a good thing. And it may be malicious or not, it's still a judgment. How did you feel when, like, emotionally when people would tell you, no, you can't do this, or you have to do it differently, or they gave unsolicited advice like the wheelchair.
[00:07:10] Speaker A: Well, I didn't argue in anything. Yes, I had some expressions that could tell by my expression that I wasn't happy. But instead of turning that expression into a negative thing, I said, do you mind if I try it to see what works and what doesn't? And then if it doesn't work, go back to the original plan.
[00:07:28] Speaker B: I love that. See? And I. And I think that's a beautiful way of mentioning it back to the people so they, they don't feel like they're being criticized or targeted. And you handle it very well, because you respond in a way that, that you know, they're not being, trying to be mean, they're just trying to help. They just maybe can do a better way.
[00:07:48] Speaker A: Right. They don't. Back then there was no training for diversity or inclusion or something. It's always isolated. So we had to make our own inclusion in a way.
[00:07:57] Speaker B: Absolutely, absolutely. I love the self advocacy.
Most people, even people who don't have disabilities, have a challenge in school standing up for themselves. So I admire the fact at such a young age you knew how to self advocate, you knew how to stand up for yourself. Where do you think you got that skill?
[00:08:17] Speaker A: A lot of it had to do with my family environment, but most of it was because of my disability. Because I knew if I wasn't self advocating, people are just going to roll over.
[00:08:27] Speaker B: It's a good point. And you didn't want to be disregard. Right. And you also didn't want to be defined by your disability. Right. I remember back then people would say, oh, she has cerebral palsy as opposed to. She is cerebral palsy. You know what I mean?
[00:08:44] Speaker A: Yeah.
[00:08:45] Speaker B: Like people with cerebral CP as opposed to.
[00:08:49] Speaker A: Yeah.
[00:08:49] Speaker B: You know, the way the words we use is, are very important and it starts with self awareness. And now I think more people nowadays are more aware of being sensitive to how they.
[00:09:03] Speaker A: Or the question.
[00:09:04] Speaker B: Exactly, exactly. So personally, what would you say was the most challenging in your life once you started saying yes and people started letting you try things out? What was most challenging?
[00:09:19] Speaker A: To actually get people to understand, to give it a try.
Because people were resistant to that point. They were looking for an easier path. And for me it's like if you're not going to be there supporting me, just not physically physical, but being there as a backup.
[00:09:34] Speaker B: Right.
[00:09:35] Speaker A: If something happens, I don't know where to turn on, who to ask for. Absolutely.
[00:09:40] Speaker B: What would you say is the most rewarding for you to say yes, I can do this and trying it when you succeed, which was the most rewarding?
[00:09:47] Speaker A: The rewarding thing is that if I know that I accomplished it, that I could share the same model or the same example with other people that are just starting the process. Because if it works for me and I adapted that we could always modify to their specific. Very true.
[00:10:05] Speaker B: That's awesome. So I know you're, you're in town to, to help me out and to. We went to an event last night for Priscilla's organization. Oh, Priscilla, by the way, is the founder and owner of Mission Kids Success and they help families and, and individuals with autism get what they need.
She could probably talk about it better than I can, but I just wanted to give her mention here. And Brilly's helped Priscilla out. She's helping me out with my son. So let's segue into your what I guess we wouldn't call your professional life because I know that you get services from the state as far as like financial and other stuff and you do everything right now voluntarily.
[00:10:44] Speaker A: Yes.
[00:10:45] Speaker B: Right. Can you explain professionally what you do to help people and caregivers who have people with disabilities?
[00:10:53] Speaker A: Absolutely. So depending on the situation of each particular individual, whether it's a child, whether it's a elderly person, whether it's an adult with different abilities, intellectual or developmental disabilities, if a family or an organization contacts me, I will get a better understanding of what they're looking for and then develop a roadmap that would be ideal to their specific needs because every situation is unique with an understanding that they can always modify that roadmap as the child condition changes or something happens in crisis.
But I will train the families to understand which organizations and which programs are in place for their loved one so they can still live their life fully in their own environment without needing to go to a group home or some sort of assisted living or nursing.
[00:11:44] Speaker B: Beautiful. All right, so let's, so let's do some scenarios here. Okay, so let's say a, a nuke a couple. It's. They're having their first child and during the pregnancy there were no signs with ultrasound or anything of anything that could possibly go different or wrong, whatever. And then the baby's born in a hospital and you hear the doctor or nurse say, oh, or something like that, and the baby's born with a disability and the parents automatically think, we were trained, that everything's going to be fine. Now what? Now what do we do? How would you approach a family who reaches out to you and gives you that scenario? Now what do we do? We had no idea this is going to happen. Now we have this two month old and we don't know what to do.
[00:12:30] Speaker A: Okay, so in that perspective, if the family is just starting this journey and obviously it's very unknown because the child is going to grow, there are going to be changes. I would then tell the family and say, okay, do you have a primary care doctor or do you currently see any specialists when it's in the hospital or private practice? Ask the provider to give you some referrals to organizations, whether it's the local state agencies like social services or government Social Security, if they think that the child is Severe enough to get the services.
Once that is in place, I will encourage the families to go ahead and start the application process because it takes several months, if not years to get services in place. And then I would also give the families like a resource list of the things that the local organizations that can be in place for them for immediate help. Whether they need housing, support, for instance, someone to come out to the house and help with nursing support, stuff like that for the child who's in the nicu, nursing programs or like child care services for child with special needs. So I would give them the local organizations that would be in a position to help them even if it's just for a couple hours or respite care services or groups that they can relate to for parents that are learning the journey of special needs.
[00:13:58] Speaker B: And you mentioned about local services. Now you're in Maryland.
[00:14:02] Speaker A: Yes.
[00:14:03] Speaker B: You do the research for people, whatever state they're in, to find that local for them. That's, that's, that's very, very helpful.
[00:14:10] Speaker A: Yeah.
[00:14:10] Speaker B: All right, so let's say the child is now in elementary school.
What would be some questions that should be asked to you by that family? Let's say, let's say the child is in third grade. Let's say puts them at what age?
[00:14:27] Speaker A: That's like not eight, nine years.
[00:14:29] Speaker B: Nine years old. So let's say the eight or nine year old child with disabilities. What should the parents be asking?
[00:14:34] Speaker A: Well, again, it depends on the child's condition. Whether a child has a physical disability, like they need to use a walker or a wheelchair.
The parents can ask like do we need to get an aid? How do we put it in place to notify the school administrators that my child has to sit in the front of the room in case of an emergency because if he or she can't run when they need to exit the building, they'll be the first ones running. Do we need to place like a special chair on equipment in the school? Because the schools don't have that equipment. Where do we go to order that equipment? So there's one at home and one in school. Do we need to ask for special bus or transportation or feeding services or if someone use nurses to give medicine, do we need to put in a plan that they need to go to the nurse at 12 o' clock for medications or can we ask for an A to be with them or some sort of accommodations of a break?
[00:15:28] Speaker B: Got it. I'm just going to fix the camera so we don't keep losing you not going to edit this out. This Just happens.
All right, so let's, let's do a real like case scenario. So my son is 23 and he's got Autism Spectrum disorder, what they call high functioning or Asperger's. So cognitively brilliant.
It's the social skills and his emotion regulation that are kind of delayed.
So back, let's say it's us. He, we only had, he was diagnosed in, at 2016, at age 14. We waited, what we call now too long, but back then we didn't have the tools to do it. So let's say it's our scenario. And, and he is kind of struggling in 10, 11 years old.
What would have been at that time, or actually I could even rephrase this. When he was a baby, he, we call it scooched on his butt. He didn't even crawl right. And also at times he would run from one corner of the room to the other corner room, back and forth, back and forth, back and forth. And we had no idea. He would always play with his ear or somebody else's ear.
Those kind of things we never picked up. We picked up on that they were different. We didn't think there was an issue. Let's say it's now 20, 25 and we're seeing those kind of things.
What's a good thing for parents to do? If they just have a sense that something's off, then they contact you.
[00:16:50] Speaker A: So, you know, it would be a good thing for parents to know, have established a good relationship with their primary care doctor.
[00:16:56] Speaker B: Okay.
[00:16:56] Speaker A: And ask the primary care doctor, hey, I'm noticing these symptoms. Can we do some outside assessments, like a psychological assessment or a behavior assessment or some sort of sensory assessment?
You know, can you put those referrals in? It doesn't mean it's going to happen overnight because it takes time. Can we have those referrals in place and when we think it's time, we can explore the options of getting tested.
[00:17:21] Speaker B: You know, I love what you said there because you talked about three different things, psychological, behavioral, and sensory.
[00:17:27] Speaker A: Yes.
[00:17:27] Speaker B: More often than not the sensory piece is skipped. Right. And I had, somebody else had mentioned to me who's in the industry, she said, always think about taking them if, if they don't sound like they're can hear you, if they sound like they're ignoring you or not talking to you, bring them to an audiologist and check their hearing. Maybe they don't hear you. Maybe. And then if it's, if they're not looking at you with the eyes, maybe go to an eye doctor. And have the eyes checked. And if they look like they're in pain, but they're not, they can't explain it, go to the dentist. Maybe they have a infection or a sore in their mouth. So I love how you mentioned sensory. Because the nervous system has such a lot to do with any disability. My son's happens to have autism. And, and you wouldn't be able to know that he has it unless his pattern is, you know, somebody changes his pattern, then you can tell that he's got autism. But when you talk to him, you wouldn't know.
[00:18:20] Speaker A: So unless you, unless you've been around people with different abilities to pick it up very quickly, but for someone new who's only there 15, 20 minutes, they're not going to recognize, okay, this person has autism. He may be on a high functioning scale.
[00:18:34] Speaker B: Right. So, so with him we ended up, we learned about something called the five twenty. What's the five? Five.
No. Yeah. 504.
[00:18:42] Speaker A: Yes.
[00:18:43] Speaker B: Tell me about. We did the 504 because they initially said he wasn't qualified. Qualified for the IEP. So let's tell what, tell people what a 504 plan is.
[00:18:51] Speaker A: 504 is an educational plan that allows individuals that are higher functioning get support in school and in college, but for extra time or assignments or some minimal breaks in between classes. Correct.
But mostly it's used for testing accommodations and homeworks.
[00:19:11] Speaker B: Right. And 504 plans aren't legally binding. So when you step it up, the iep. What does the IEP stand for?
[00:19:18] Speaker A: The IEP is also for educational support, but the IEP provides more supports such as speech therapy, occupational therapy, physical therapy that you can have your child get in school or like home modif. Like modifications for homework. Instead of doing 10 problems, your child will do seven problems. Or like you have a legal, you have a way to modify things and according to your child's educational needs and modified where it's more accommodating and people have to follow those rules and regulations. Wherever the 504, it's not always regulated, especially when you go to college just because you had a plan in school. The colleges don't have to take it. They'll do their own assessment and determine it.
[00:20:05] Speaker B: Okay. So after, after high school, I remember because he's, he's trying to go, he's going to community college now. They don't have IEPs in the colleges, but they adapted some of the accommodations he had in his IEP that they could do in college, which is. Yeah, very helpful. All right, let's so let's go into graduate high school.
And I just heard a term last night, we were at the charity thing that at 21 they fall off the cliff. And that doesn't mean physically fall off cliff or go back. It means at 21 these services automatically like change or stop. And so with, with my son, he's 23 and he had a rough patch last year, July to September, so we had to start looking for services for him. And at 21, as we said, there seems to be not much for people 21 and older.
So with Matthew, what would have been a good idea for us to do had we known? Let's, let's actually, let's, let's do. I'm going to go back a little. Graduates high school. Right. And not sure if he wants to go to college. Now. I heard something about transition schools and stuff like that. Can you talk about what if we had known?
I heard that you can graduate high school and ask them not to give you the diploma because then you could. There's some of these transition schools that the counties offer. Have you heard something like that?
[00:21:32] Speaker A: Yes. So I'm going to elaborate that. So there is a two different transition programs. So you, when you're in high school, you start the transition process from 9th grade to 12th grade. You meet with the transition specialist who's hired by the school, by the county.
And their role is to put a plan together for the individual student, whether they're high functioning or low functioning, for services, whether it's day programs or like residential programs or employment programs. For those that are low functioning or high functioning, let's say you want to go to college. The transition specific specifically helps like we've gone into applying for community college, letting them know what programs are in place for them, whether they want to do trade school or they want to do post secondary education certificate like an associate's degree and as a facility theater. She or he would say, okay, contact the Division of Rehabilitation Services to help with paying for school or to get an assessment to determine where your child is, what accommodations he or she will need in high school, in college, and who would be paying, whether it's financial aid, whether it's the family, whether it's the loans. They would put a plan together and based on that plan, the individual will follow that plan and modify it as time goes on. If they need to stay an extra year. For those that don't have diploma, they can say to the school, okay, we understand that he's due to graduate age 18, but we want to keep him there until age 21 and do the life skills programs and then get his certificate program and then transition into adult services where they can work at home, going to community like shopping or library or like community and help out in the community and doing stuff once or twice a week.
[00:23:22] Speaker B: See everything you just taught me, if I had known that when he was a freshman then, now here's my question.
Is it up to the school? I mean they knew he had an iep, right? They should the I M B. Don't you think the school schools, they have to do it should offer a transition specialist.
[00:23:41] Speaker A: Yes, it has to be. You should request that service when he isn't going into high school.
[00:23:47] Speaker B: All right.
[00:23:47] Speaker A: The first year of high school it should be on his iep.
[00:23:51] Speaker B: Right.
[00:23:51] Speaker A: That you need to work with a transition specialist.
[00:23:54] Speaker B: Okay, so folks out there, if you, you know, your child has a disability and you had a 504 or an IEP in elementary school and they get, they get into high school freshman year right away when they implement the iep, if they're not going to volunteer a transition specialist, ask for it because they're all mandated to offer that. And then you actually have a path for your child to follow for the four years of high school and then leading into the college age years where they have alternatives and choices. Right?
[00:24:28] Speaker A: Yes. One thing to consider, most of these transitions facilitate facilitators are learning the process as you go along. Some of them are more knowledgeable than others. But always do your own research and be determined to explain to the transitions facilitator this is what my child needs. Give us more options.
[00:24:46] Speaker B: Okay, thank you for that. So guys, I think we're learning that don't trust the school system to volunteer stuff. You the, the best advocate is you for your, for your child and for yourselves.
And Brilly is here to help you ask the right questions at the right times to the right people. All right, so let's see. So now really I just certainly believe that the audience has captured the essence of Brilly Semenov and they're going to want to get in touch with you. So everybody out there. Brilliant. Said her email is the best way to reach her.
B R I l l y28gmail.com or you can call her at 443-650-3999. Really knows the whole path with going for special needs trusts. She can help you guide you to the right place with education, the government, any kind of federal offerings, local government services, anything you need. She's, she can basically feel that you Know what? She's the type of person that she would say, well, I'm not sure the answer. I'm going to figure it out for you. And she goes and finds it for you. Yeah, that'd be safe.
[00:26:01] Speaker A: Yes. And if I can help you, I'll put you in touch with someone that can and has done it the right way.
And most, most advocates don't spend time researching. I actually spend time researching information that's, that makes me stand out among other people.
[00:26:15] Speaker B: Beautiful.
All right, so I have two final questions for you. You ready for this?
[00:26:20] Speaker A: Yes.
[00:26:20] Speaker B: All right, so Brilly, give you an opportunity.
Think of where your happy place is, where you enjoy being. And you happen to be sitting down with 7 to 10 year old Brilly and you want to give her advice about life. What are you going to tell her?
[00:26:34] Speaker A: Don't be afraid.
Start exploring earlier because if you don't take the risk, you're not going to learn what you're good. What where you need to improve and what setbacks you need to take to learn new things, new skills.
[00:26:47] Speaker B: Love it, love it, love it. Okay, so now let's go to now you're sitting down with Brilly, the young businesswoman, young entrepreneur and you want to give her advice about business. What are you going to tell her?
[00:26:57] Speaker A: Start exploring at the younger age.
Take college courses at the younger age or certificate programs. Learn your pros and cons and see where you need to improve and ask for help when needed.
[00:27:10] Speaker B: I love it. I love it. Well, brilliant. I want to thank you for coming on. I want to thank Priscilla Leto who happens to be in this room. I'm going to put her on the spot right now. Hey, Priscilla, just yell hi to the audience.
That's, that's Priscilla Leto and she's awesome. She is the owner and founder of Mission Kids Success.
So look that up on, on, on the on the web.
Everybody out there. Well, first of all, let me tell Billy you're a wonderful human being. Thank you for what you're doing. Keep doing what you're doing because you're, you're helping so many people out there who need your help.
[00:27:42] Speaker A: Thank you, Drew. And thank you, Priscilla. Keep continuing to helping the families that need your services.
[00:27:47] Speaker B: Absolutely. Hey everybody out there, take care of yourselves.
Thanks so much for listening. If you enjoyed the episode, please subscribe and give us a review. To help others find it, I'd like you to answer this question.
Are you living the life you, you want to live or are you living the life others want you to live? I'd like you to think about that for a second, because I strongly suggest you live the life you want to live. If you want to learn more about what I stand for and my services and how I'm able to help many men get out of their own way, please go to my website at www.profitcompassion.com.
feel free to also email me at drewrophetcompassion.com I'd love to have a conversation with you.
Take care of yourself and choose to write your own story instead of letting others write it for you.
