[Doug]: Welcome to episode 33 of Feeling Through Live. I have the distinct pleasure to be joined today by Nilam Agrawal. And, you know, on the bottom of the screen right now, it mentions your association with the national family association for Deaf-Blind. But that's only because we couldn't fit all the other things that you do too. So, you know, why don't we start off by you just letting people know some of the other things you do in addition to being a board member of the National Family Association for Deaf-Blind.
[Nilam]: Hi Doug. Thank you so much for inviting me today. It is an absolute honor, and I feel very thankful to have this opportunity to come and talk with everyone here. My name is Nilam and yes, in addition to being a board member with NFA-DB and be the co-chair for the outreach committee, I'm also the ambassador for Usher Syndrome coalition. I'm also leading the two FC Family Community calls for Academy Krieger workroom. So all in all, I think I am very excited to have this unique opportunity to work with different organizations and be a part of their advocacy and awareness work.
[Doug]: Well, you know, again, we've been talking about having you on here for a while and I'm so glad you're joining us. We we've had the pleasure to get to know each other over the last year plus, and I know there's, there's a lot of great stuff to get into, you know, today we've titled this episode Education Advocacy for Deaf-Blind children. I know, as the parent of deaf- by the way, does your son identify as Deaf-Blind as well, or I just, I know that's, we've talked about there being a distinction between your, your daughter's needs and your, and your sons. How does your son identify just so I can get that
[Nilam]: And identifies himself as a Deaf individual. He really does not identify as the Deaf-Blind yet,
[Doug]: And your daughter does identify as Deaf-Blind
[Nilam]: My daughter does yes.
[Doug]: Certainly we'll be getting into that, the heart of that shortly, but kind of before we hop into that, you have such an interesting journey to get to, you know, us sitting here talking today. And, I know part of that journey, is a journey that has taken you around the world. Can you give us a little bit of context of that and kind of what life was like before the birth of your children?
[Nilam]: So, Doug, I was born and brought up in India and, yeah things when growing up was so much different for me, in India, the way I was grown up, I never had an opportunity to be around children or individuals who have Special Needs are, had any special needs or differently abled students in my classroom. So, I was just a normal, happy-go-lucky kind of person. And, I am the first learned from both of my parents family to go for a post-graduation to eighth grade, I did a master's in business, and I had a career in business development and recruitment, and then being moved to India. It was for my husband, from India to U.S. for my husband's work. And after a year or so, my son was born and things were not looking like normal book with him, but we did not have any idea about what we are looking at. And, really again, had to move back. So when you are in a segment of a global working population, you really do not have a home. You go where the work takes you. So after being in U.S. my son was born and then he was six months old. We had to go back and then we came back again to us, and that is us to the second move back to U.S. After a year, we started seeing certain element of his differential helped me, I mean us, with my son, it was in 2008. And actually the first time we experienced that was in 2007, my mom and my son came down with unexplained fever as suddenly he was attack sick. He was like a newborn baby. He lost all his motor muscles. He could not lift his head up. And I had no idea. My husband had no idea because neither of us have ever been around a child with different health needs. So we, we were lost and it did not help us that we were newly immigrated in a way to this country. If we had no roads, no friends, no families and people trying to navigate the system and trying to understand everything. It took us over here. And by that time he came to know that he has started losing his hearing and some amount of Myopic Astigmatism was involved. And the tax sale continued, even though he has been able to gain a long lot of lost skills. He still had some amount of attacks. So I remember we went to Duke that time we were in North Carolina and the doctor there, we started investigating the common causes for hearing loss. They screening for connects and screening for Usher Syndrome, but, you know, a particular mutation was not identified. So we were given that diagnosis of mitochondrial disorder. And there I was in 2008, absolutely no idea about medicine, because till that time, the only time we had to go to the doctor wasn't down with cold or fever and trying to just navigate and understand. And I, you know, it's so strange when you asked me to tell me who I was and what I was before I became a mom, because it feels like a lifetime ago. I am so different. I think the parenting journey was literally a rebirth of me and trying to identify myself as a new person. So in 2008 November, I remember when we finally got to know that he has a mitochondrial disorder, for the first six months we were lost. You know, because during that time when the diagnosis is given at such an early age, children not have very good prognosis, they do not have very high life expectancy. And I think the biggest thing for a parent is to know that your child will not outlive you. And, you know, this is where I have told you this, when Pharaoh's was saying that it literally made me cry because just like Pharaoh's we thought that I just want to live one day more than my child, because the fear of what may happen to them, if you're gone, especially in a foreign country, it might be their home country, but it is still a foreign country for us because I am a first generation immigrant here. So I did what I'm doing right now with the shared community. And I think my first journey with especially parenting and being with family leader organization started with United mitochondrial disease foundation. The mitochondria, this is nicotine, is such a strong, friendly, and supportive community. I learned a lot and, I grew a bit, the organization, people were welcoming me with your resources, your experiences. If I was scared, if I had questions, they would try to guide and support me. And then I found myself being a co-leader for the tar target chapter. So that was pretty much my, my life. I think that just as early as I can say my life before I became an Usher parent.
[Doug]: And, you know, thank you for taking us through that. I'm wondering, just to kind of go back to what you were saying about prior to the birth of your son, and then the later the diagnoses, knowing very little about certainly any, anything that he was diagnosed with, but like the disability community as a whole, what was it like for you initially as far from the standpoint of, you know, having very little knowledge and understanding of that world and like, where were you getting your information from? Did you feel like you were able to get the information you needed to start to understand it? How did you start to learn about alert learn about these topics that you obviously are very well versed in now,
[Nilam]: You know, when Barron walked out of the doctor's office, the first feeling that we have this such we are drowning, but we are desperately trying to put our children up on a shorter and let them breathe. So that is what they do. And at that time, and you're so desperate not to drown, and even if you're drowning to not to let your children down and trauma with you, your check tapping into all kinds of resources. I think for me, it can be even more important because I was always aware I do not have a family. I do not have anyone around me who can take care of my children. I did not have anyone who could guide me, who could support me. So I had to figure it out everything and Google internet. It was not very developed 10 years ago. And, I think I was very fortunate that at that time we did have this community growing into the mitochondria, fill it with U N B F, so I reached out to other parents. Parents are the most resourceful that you can find for any special needs community. You know, whether it is Usher Syndrome, whether it is Deaf-Blind as a whole, whether it is mitochondria disorder. So that was one source for me then, internet is a wide ocean. There are lots of information there. And when you go there, it is very overwhelming because there is no sector. And if I can say one thing from my experience, it just that it just never keep two extra tips. It's somewhere in the middle. But when a parent is given that diagnosis, they really do not know what, what that middle is. So, you know, if you have that clarity of taking away the extreme end, and then connect with the community to collective experiences, you will gradually start understanding more and more about the pain, but it is not easy. And it is not like it's a switch which goes on and off. It is a learning process and the errands support each other. And I think our motivation is that we can benefit others who are our own learning curve so that everyone is not stopping at .0.
[Doug]: So you talked about parents supporting each other through this. So at what point did you start to feel like you had like a sense of community in this space, perhaps with other families in a similar boat and what was that process like?
[Nilam]: Actually again, Doug, I think you got two parts to that. It was the first part is 2008 to 2017, 2017, December 2nd. I remember I was in flight. I was going to visit my sister in California and my plane landed, and that is when our geneticist called me and said that your children have Usher Syndrome. So, if I look at the first segment of my life of nine years, I think, it was not just, I cannot pinpoint to one particular point where I have enough information that I can share with the community. I think it comes more about your own passion, about how much you can share with the community as you learn along the way. So I, to not think there are any, there is anyone in this field, we can say that I am the authority and I know everything conclusively. I think they all work together beyond reach out to each other and we share a numb from each other, and then we pass it around. So I, I do not know if it answers your question, sorry.
[Doug]: Can we go back to the birth of your daughter and kind of where you are at, in your journey with your son when your daughter was born and what that was like?
[Nilam]: When we were one year into the diagnosis of mitochondrial disorder, but my son, when we found out that my I'm pregnant with my daughter and her book was very complicated. And she had me Meconium Aspiration. She almost did not make it. And she was on ventilator. I'll need to stay for three weeks. So things that are very different, we did approach her with the understanding that she also has mitochondria to solder, especially because she has an unexplained traumatic birth but things were not fitting in. We were trying extensively to find the mutation, but even not typically to identify that my daughter again had global developmental delays she aimed on with unexplained high fever when she was 21 months old, she brought it back sick. She started losing her hearing. And then it just so happened that when she was putting the months old, she came down with H1N1. She very, very sick that time. And she was on ventilator and she came very close to not making it. We were very lucky that she fought. She is such a feisty spirit of the girl, but when they took her out of the ventilator, that was the first time that we realized that she has lost her operation. So for the next three weeks, she was totally deaf and totally blind. And we were not able to understand this was also the time that we had moved back to India for three years again. So she, when she was six months old, we had moved from North Carolina back to India. And it just so funny to say, in hindsight, that people would think that you were born and brought up in that country, they would be comfortable, but as a special needs parent, when I moved there, I literally felt I have moved to a foreign country all over again. There will be, we were trying to understand what is going on and no one had any idea why she suddenly has a total vision loss. And what is so strange is that, you know, just like my son started regaining his lost muscle skills. She's talking to be giving her lost vision by being able to see in low light. I can, this is interesting as a parent because you know, like I did not understand about hearing loss. And I did not know about mitochondrial disorder. I did not know anything about visual loss for my, with my daughter. And, you know, in my head it was not making sense that in the darkness she can see, but she can not see anything in the light. I mean, how does it work? And, you know, till that time, I was not even aware that blindness is not an absolute condition. It's a whole spectrum. There is photophobia. There is rod cells, cone cells, there is night blindness, all the different element of that. And then up, I just knew that the adopters or not will swing the right direction as a mom. I always had a good feeling that they are missing out on the piece of the puzzle, but I was not educated medically basically together myself. So, yeah, it has been an interesting journey because she was given multiple diagnosis. She was said that she has a Retinal Retinitis Pigmentosa that says she has Retinal Myopathy. Then she was said that she has got a good visual impairment. It was like, okay pack your bags, now you're not going to stand here anymore. You're going to move to this space. And then you have to move from this place to another place. And we were lost, you know, we absolutely had no direction. We had no clue and we did not know what to do. And I think that is the time. We were also struggling with my son's education in India. He was in a mainstream school environment in India. The school setting is much different than in the us. And most of the students, they go to private schools there. And the school that we were sending my son to, it had a resource cell, but for them, Special Need was only learning disability. They did not even think that they might get a student with hearing loss and they need to create infrastructure or him though, we was struggling a lot with his school. And I was basically involved with this education hundred percent, which was my responsibility. And we were taking the curriculum from the school. And I was teaching him at home. I did medical presentation of my daughter, who was a big puzzle and no one knew what she was and why is she has, and I think that my husband made it a motive for himself to find a project here and get a job here and move here. And that is how we moved back in 2000. It has been an interesting journey even after that, because once we moved here, same problem of moving and finding yourself in an alien place because I was in not Caroline, but now we are in Dallas, Texas. So it's a new Yukon. It's a new country, literally like a new country for me. Right? I do not know the doctors. I do not know anything, anyone. So we were still navigating through the system and trying to latch onto whatever resources and help and information we were getting in the processes. I should syndrome death. Time is flustered. It's not anywhere in our preview. You know, it was not in the umbrella. We had no idea. We are looking into that. And you have some classic things, Doug, which, you know, we will disclose as the conversation goes on. I think one of the reasons I am associated with so many different organization is that I have faced this challenges in my own life that our children are so complex. They are like different layers of onion and you have to play it out. Totally understand what is inside that what we understand about usher syndrome right now, it's not all inclusive. And I think as we study more and as we get and connected with the creative community, we realize that there's so much more that we need to find out. So for my daughter there are a few classic triggers, which no one could add. Every time she would have high fever, she would have had a simulation and no one could make any sense because again, misses a child which can not be put in a box. Okay. So it's not a C shirt. She's not getting that. This is not that mitochondrial disorder. What is it, but who is going to think, what is it? No one has the time to invest themselves in thinking about what it is. And it took us five years to find that one tutor who thought they have to invest themselves to find out what it is. So it was one of one such episode in 2016, when my daughter was hospitalized with very high fever and she had an episode of how simulation and we found a wonderful doctor at children. And she said that, you know, I wanted to the genetic testing once more because it just not making sense to me. And I'm not okay with that. And I'm so thankful for that doctor is saying that I'm not looking at that. I'm thankful for her us to know that it is important for a parent to get back for sure. And to get the right type gnosis. So it took us finally one year, but after that, we finally found the correct mutation. My kids have cost's mutation, they have type three, B is a R S and type three B notations. So that is where we have. So it was again, a new word which opened up for me. And I'm being very honest. I really had no idea what Deaf-Blindness is. I did not know anything about usher syndrome till that time. So, but I knew that finally thing, no destination, I was happy that I am not going to worry every time my children get sick at one or more organs will get involved. I do not have to worry that my children will not outlive me. Hopefully they will. And, you know, and I know that I have to focus my energy in understanding about syndrome and Deaf-Blindness. It also brought in the fear because so far the vision need was only for my daughter, but now I know that my son on still has the same condition and it is progressive. So sooner or later, his vision is going to get involved with just to not know, to what extent and when,
[Doug]: You know, one of the things that keeps coming up for me as you're talking is there's kind of always being on this very unsteady ground, right. Of getting so many, having such questions for such a long time of like what even the diagnosis is, you know, maybe getting misdiagnosed, kind of going down all these different tracks that maybe you hit a dead end for a really long time. And then the moment you get, you maybe learn a little bit more about it. There's this whole other world you need to learn about while also advocating, starting to realize that, you know, no one's going to like put the time and energy into discovering what your children need more than you are, and this experience of you needing to get really okay. With kind of constantly being on this, like unsteady moving ground beneath you, did you feel like at some point during this journey, have you been able to find, you know, a footing, feeling like you're really feel like you're really stable in an unstable, constantly shifting environment around everything that you've navigated with your children. Do you feel like how, how has that part of your journey been over the last number of years that you you've been in this space?
[Nilam]: So I think every time I thought I'm feeling comfortable, life decided, okay, I am going to throw in a surprise for you, but I think finally now I feel I have reached a point when it comes to my children's needs medical Academy, and I have a very good understanding of what they need. I know that this is my certainties today. The only thing they know about life is that it's constantly changing. So what I understand right now, it makes me feel confident, but I do not know how it will present itself in the future.
[Doug]: We have a question here from Jeff Cook and he asks, he says, "Neil, can you share about your feelings as a Deaf-Blind parent at your first IEP meeting? With all these professionals talking slash telling you what they've experienced with your Deaf-Blind child, some of them in the mainstream schools have never worked with a Deaf-Blind student in all their careers, and they're telling you about your child, et cetera. How did you feel and deal with all of that? And first off, can you, can you just tell us what an IEP meeting is?
[Nilam]: So IEP is the individualized education plan and every child who has a different learning needs has been given the right by the government to have an into, to individualized education plan that is designed to address the unique learning needs. And yeah, Jeff, that is a very beautiful question. And I do not want to hurt anyone's feelings, but I'm going to be very honest with you because there are two different approaches and feelings now that I can share. But the first time I walked into the IEP, but my son I'm being very honest. We got very good accommodations. We got everything that he needed, but it was also because we were going to the regionally based school for the deaf. So they are equipped. They have the right tools and resources to eat it to the Deaf or hard of hearing child in a mainstream school environment. And with my daughter at the same time, then we went up, I trusted them. I relied on them. Like I said, we were mentally at a very different space. I was still trying to navigate the medical part of it. I was trying to establish the care and understand what to do everything. So I believed what the school wants me to with her is in her best interest. And I'm very sure initially she bought everything that she needed. And I'm very grateful for all the efforts that the teacher and the school system has within her. However, this question also brings me to our current experience and I'm thinking, this is something that will resonate with each and every parent who has a Deaf-Blind student in a mainstream school environment. It was very important for us to understand and very humbly accept that when we have one desk line student in the classroom, and we have worked with that student, that one student that we have bought, but they can not take that plan. And we can not take that learning and put it blindly and apply it on another child. It does not work like that. And each side has a very unique learning means and they present their unique ways. So we have to be humble enough to understand that we need to keep coming back to the drawing board and look at that child. And the IEP has to be designed with giant led needs. So having a fight, norming media placement done for that child who understand that we collaborate, we communicate, and we build a team. If it's working together in a cohesive matter, look at what are the missing skills that the child has and how do we get you through that? So that becomes very important. So I think off late, I have realized that our team has missed out on those opportunities and my experiences right now. And I go to the IEP is more often an whelming sense of urgency that we need to figure this thing out because I'm just running for my daughter. Why we thought out we can put all the systems, we can put the bells and whistles in place, but she is growing up. And what is very important for us to understand being a parent of a Deaf-Blind child or being educated of Deaf-Blind student, is that it is just a deafness. It's just not that I'm, this, it is a 12th sensory implication, and it present itself in a unique way so that if we to not keep checking on concept mastery this thing up getting wider and as such, I've moved from one grade to another, it gets even more difficult to fill in that cab.
[Doug]: I'm going to just take a quick pause for an interpreter switch. Yeah. All right. All set. So, yeah, this is a really- I love this part of the conversation. I have a couple of follow-up questions, but before I get to that, a couple more questions from our viewers Jessica Mizel asks, do your children have interveners?
[Nilam]: My daughter has an intervener, not my son. My son does not need an intrepreter. That's why he does not have, let me say that,
[Doug]: That, that certainly makes sense. And then Divya asks and hi Divya also a close friend of feeling through live and a former guests herself. She asks, "how do you feel when you and your husband have big challenges in daily lives?" Like public accessibility travel, they cation, you know, anything, social family members, friends at big events or festivals. How do you feel when you have like big challenges during those daily parts of your life?
[Nilam]: Yeah. That's such a beautiful question and so relevant. I think until you start living this life, there are so many aspects to that that we do not think of. You're not vacation planning is no longer pack your bags and go if we are going to a place, I have to make sure if the surface is that simple for her like my daughter is a Girl Scout and we go camping. And, you know, the first time I went camping, I did not know the ways she would need to be land far so that she can go hiking along with us. And then I realized that the trails are not accessible. And she would get bumped by a tree here or a branch there. Or if there is a loose rock on the floor, she might topple on that if it comes onto her feet. So these are learnings that you get as a parent, as you start working with them. And I think our vacation planning is not the same. And I wish, you know, there was some handy books that I would have God, when I came out of from doctor's office, this is how you plan your child's life. These are the things you have to do and different stages of fishing meat. These are the different things that may be want to be aware of. We have to have, like for her white cane, we have an attachment, which is for daily use. Then her teacher gave me a special attachment because we were going to a small areas. I can go on the snow surface, going out during low vision, sorry low light areas is a struggle. I have to make sure that I'm holding both my children's hand either I am holding both of them, or my husband is holding both of them. You have to make sure that they are able to move around traveling. You know, we have to plan extra time for traveling in the airport so that we can go through the, I, I think there are so many fine things. Like my daughter cannot go to a regular movie theater and watch a movie. I did not know that she could not see 3d movies. It was a big learning for me. Closed Captions, making sure that if you're going to watch a movie, we go in advance, we get a full scaption device so that my son can read that. So accessibility continues to be a big issue. And, in India, it's even more because here the infrastructure is set up in Intel. We have to create that infrastructure. We have to create that awareness. It's really sad that the government of India did not even recognize Jeff blind as a condition until I think it was somewhere around 2012 or 2016. I'm sorry. I'm not able to remember the exact year, but it just, as late as that, that they part, it is sort of low incident. We had really to not need to recognize. So if you cannot even recognize the condition, we can only understand how much work we need to create to, and infrastructure to support this individuals.
[Doug]: I mean, just to speak to, you know, if you can't even recognize a condition, how do you even start to, you know, accommodate, you know, make accommodations in society and set up ways to, to really make that the world more accessible for someone with that condition. It makes me think again, I want to relate it back to education, advocacy, being something that's so close to your heart now. And I know you'd mentioned before the fact about you can't, you know, as, as an educator, you can't take one child, who's say Deaf-Blind, you know, figure out kind of the best way to accommodate that child. And then just duplicate that across any other child who's Deaf-Blind, because as you mentioned there's many different manifestations of that and many different needs associated each as many Deaf-Blind children, as you have, they'll have a very different experience with, with their needs, what making things accessible for them, kind of the best education experience for them, and really needing this more personalized, you know, tailored approach to each individual. I I'm, I'm gathering from what you've shared that that's often not the case. So, you know, as a parent and also as someone that this has really become a life mission for you, how, how do you start to change that? You know, how do you start to change a system and an institution that's not really set up to understand and accommodate often. I imagine your child and I'm sure many other children out there with disabilities, where do you start with that?
[Nilam]: I think that is rare. You know, we have to create an infrastructure where we can collaborate together. I believe teaching is such a noble profession because definitely no one is going there for money. We know that, right? So we have to find that song where we can bring the educators and the parents and the family organizations together where they can talk and share their experiences, see the automatic team. And, you know, Auvik past presents a very unique situation for me, where I ha I could sit next to my daughter, for her virtual classroom setup and observe everything very closely. And my daughter is in a mainstream environment and she, this children are called proficient communicator, though. There is something better about that word. So we'll leave that, but we will focus on the advancement of the student and the main thing is that what happens is at the least of this classroom is not designed to address the unique learning needs of a Deaf-Blind student who is there and this children need individualized attention. They also need follow up. Then they need concept mastery. You know, we have to build some time to understand better if we understood everything or not. Are there any areas that we are struggling with? And, you know, it is a lot of weight to put on a student to come and tell us, I am not able to understand this concept because sometimes they do not even know themselves, that it is not okay. That is where the Deaf-Blind interviewer becomes so important because she is the conduit. She is the bridge between the teacher and the student, and she is simply shadowing the child, watching what the child is doing, observing their body language, understanding the unspoken words. And you're not supporting it from behind, but, the teachers and the interveners, it cannot freely communicate with the parent. They cannot tell them these are the ways we are struggling. The parents will not know what is happening with the child, because right now I had the unique advantage of sleeping next to her. I did not have it until now. And that is why so many other skills and struggles, even though I knew it did not make any sense to me. And since, and the same aspect I can medicine word. If there is no one who takes ownership, if in education, we do not have anyone who takes ownership about the success of this children. And there are so many news spots and so many different stake, or those who are not communicating and sharing, it's getting lost. So how do we create a system where people can freely share information and resources he can support and train the teachers. They can support and train the parents and create an infrastructure, which is much more beyond what we understand education to be like right now. And family organization, ciders, keep talking about them because I'm a big believer in the power of family organization together. We can do so much. And when we have a collective forum that different parents can come and share their experiences, I think it tells the educators to understand the true needs. So yes, training and collaborating and sharing will be the way I think we can get done ad finance, because we can create everything. But if we do not have a program which is supported financially, we cannot implement that.
[Doug]: You know, it's so interesting. You mentioning how your awareness has changed during the pandemic sitting alongside your daughter during her schooling and how much you've learned during that. Patty McGowan, you know, commented over here. She said, yes, you don't know what you don't know. And even with someone like you, who's obviously dedicated so much of your life over the last number of years to really understand your children's needs and advocate for them. Even you are still learning exemplified during this time during the pandemic where you're really learning that much more intimately about your daughter's education process and how to better accommodate it, you know, to follow that up. And you were starting to talk about this, but Patty also asked during COVID and online learning for your children, know what lessons have you learned that you'd want to share with other families?
[Nilam]: I think the lesson I learned so far with my daughter has been that mom's gut feeling is always right, and I should not second guess myself. I, I always feel that people who are professionals, they are better equipped and have more information about my child's need than I do. But when I sat next to her and I observed her closely, one thing that has been bothering us for, with my daughters since she has been in first grade, is that she has not been able to learn to read. And every time we brought it up with the school system, we were told, you know, she can not see well, so she can not learn to read it. It's all because of her vision. No, it just not because of her vision. It is because she needs a different way of teaching. She needs that extra layer of attention. And I could do that with her in spring when I started working with her to the beginning of the school grade here, she had gained two reading grade levels. I am just a mom, not a trained person, and I could do that, but it also reiterated that a child is a child and each, and every child can learn. And if we are not learning the way we are teaching them, maybe we should teach them the way they would learn. So I think that has been my biggest funding.
[Doug]: It's so interesting that you say that literally just this morning shortly before our conversation right now, I saw an article about a young woman with down syndrome who went on to be an amazing student. I think she was the valedictorian of her high school and has been very successful in her education. But she really had the main hurdles that she had growing up were so many people saying, Oh, you can't do this, or you're not going to be able to do that. Something that's echoed. So often on this platform by a lot of people with disabilities is often one of the biggest challenges is overcoming all of the people that say, you can't do this, or you can't do that. And really just closing the door on it before there's even been an opportunity to try to, you know, figure out a different way of going about something that would lead to success. So, you know, certainly you, you just encapsulated that as far as the tendency sometimes not necessarily from, you know, anything other than just, having a lack of understanding and education, but by from institutions or individuals to just go, Oh yeah, just make assumptions as to why something's not working yet. And just kind of write it off and as you've exemplified and certainly learned even much more. So during this time being home with your daughter and alongside her, as her schooling is that, Oh, no, there, there are things that you can do that may be, just have not been identified yet. And I think that's such a, such a valuable thing for everyone to understand, you know, cause obviously you as a parent have to understand that because you're the one that's going to be there fighting for your needs. Like no one else will, but for other people to kind of understand, okay, in a situation where I'm, you know, I haven't encountered that often. I really need to dispel every assumption I might make and just throw them completely out of the window because they're not going to serve you in any way, because ultimately what you're going to be doing is probably closing the door on something that, where there's, there are plenty of options there, you just haven't ever been in a situation where you've needed to figure them out yet. And I think that's just such an important part of advocacy on your end is getting people it's not just like finding the solution. The bigger step feels like just getting people to understand that there could be other ways to do something that we just haven't explored yet. And that being almost like the largest barrier there. Interesting follow-up question here to part of our discussion from a moment ago, Julie Meyer says, Neil, and I'd love to hear how you and your children's educational teams have supported your kids. Self-advocacy do they attend and actively participate in their IEP planning and meeting? Do they take part in identifying annual goals?
[Nilam]: Yes. Oh my God. Both my kids have done so amazing. So my son, he has been truly blessed. He has got such beautiful IP team year after year, and his middle school team leader. Hi, Ms. Tidbits. I don't know if you're here or not, but she has given him very good advocacy for it, she invited me to IP and told him that it is important for you to start taking charge of your education plan and start advocating for yourself and designing uncle's doctor. Again, she is a fierce advocate and you have seen so many of her videos and all, she has a voice. She knows what she needs, and she can ask about that. And I have a big gratitude for her VI teacher who sadly is not working with her anymore, Mrs. Mallory, and she implemented those skills for her. So he or she can advocate for her knee. She can see whether something is accessible or not, whether she can see it, but not. And if she needs any changes to that, 2020 was the first time I invited her to attend her art meeting. She's 11 years old. She was 10 that night. So I'm hoping that she'll continue to do that. What I want to say is that I know Krishani has been struggling a lot with the virtual platform. There have been many ways we realized that her ideas were not getting implemented. Her modifications were not coming her and adaptations were not happening. And she was very frustrated because she was running from one teacher to another teacher and I'm asking them, I can not see this, and I cannot understand this and you please tell me again. And I, it's not fair for a 10 year old child to go around and ask to help me. And then I said you'll have to come to the IP and you have to tell them what you're struggling with. And that night when she slept, it was couple of nights after pack and she hugged me tight. And she said, mommy, I want to say, thank you to you because you invited me there. And it made me feel like matter. Doug I cried so much after that because she always matters. And you know, I am very happy that she knows that. And as a parent, we always have only one motivation that the one might give up on them. They do not have that option. We are never going to give up on them and you should never be, never see themselves as a child with certain medical diagnosis are unable. Deaf-Blindness is a part of them. They are so much more than that. So to giving them that direction and protect your psychology and confidence was important. And at that moment, when she told me that, I said like, I read him to myself. And I think she knows that she matters.
[Doug]: Julie followed up with saying that, you know, this is so great to hear. I think supporting self-advocacy as early as possible is the way to go. And you know, something that also comes up often on this platform and, and your discussion is reminding me of is the fact that look clearly we want a world in which all of what you're discussing around, you know, specifically your daughter's needs in an educational environment or beyond that in the world as a whole should be better understood by an accommodated by everyone everywhere. We certainly are advocating for a world like that. But one of the, when you have a support system, like you've created for your daughter being alongside her, you know, every step of the way, and certainly creating a network around her to help with these issues. One of the kind of silver linings, if you will, is a child to again, get so good at advocating for herself so early on, and some of the extreme obstacles and challenges that she faces that might be different from a lot of her peers are things that with the right support system can really serve her later on. Because, we talk often about, you know, during the other month where it, where it was national disability, employment awareness month, you know, one of the things that makes people with disabilities such great employees is that they've already had to overcome challenges and obstacles every step of the way of they're just living their lives that they're often able to do. So really well in a job setting, because it's just a skill set that's so well worked for someone who, where the world isn't quite as oriented for them in its current incarnation, as it is for, you know, a lot of people in the general public. You know, I'm wondering, and like you said, I've gotten to see some, some videos of your daughter, and clearly she seems like a extremely intelligent and, you know, someone who's not shy to speak up for herself in such an amazing way. I think beyond her years, I'm wondering what, what are, what goals of, has she expressed to you for the future and does she have a career goals or does she see herself in certain professions moving forward?
[Nilam]: She wants to work for special education all around the world, especially Special-Ed Community goals, as she says that her dream goal, you know since she was six years old. That is when she first read about Manana and has been so inspired by her. So she wants to be a teacher and she wants to focus on Special Education and let everyone know that if a child is not succeeding, it is a failure of the adult and not the child.
[Doug]: I love that. That's well, I'm sure I'm sure she's going to be an amazing voice for the Deaf-Blind community moving forward. And just again, getting to see her and the ways in which she's learned to advocate for herself and such a wise and intelligent way that I'm sure that she's going to be able to, to achieve her dreams that she has with the last several minutes we have here, you know, I'm wondering if there's anything that we haven't covered that you'd like to talk about. I mean, I know again that your, your life takes you in so many different directions. You're a part of a lot of different organizations. Is there anything that you'd like to touch on that's coming up for you that you'd like to chat about?
[Nilam]: I wanted to reiterate that family organizations, the strength of collectiveness, I am so thankful for the opportunity that I have received through NFA-DB, Usher Syndrome Coalition, and my involvement with local state chapters. I think they have understand that the world is very small and we are all interconnected with each other. And aren't, I thought the diagnosis in 2017 off or shift syndrome, if it was not because of the resources and I found NFA-DB or the usher syndrome coalition, I would not have known so much. I think my only sharing for most of the parents who are starting this journey is that reach out you're are people, there are, there are organizations there who are senselessly working bar creating this system and they are trying to support. We are not trying to put blame or anything on anyone. We are trying to collaborate and we are trying to support each other. And yes, I am very proud of the work that we do. And I have learned a lot, and I know all these wonderful people at so many different places, one doing tirelessly so much work, so connect with them, talk to them. I also wanted to say that the TSP symposium is coming out because you were talking about what is coming up, it's in March. And then our mission is on the DB website. It just there on our Facebook page. So please come and look up. It is related to education and Deaf-Blind children education and, you know, things. So it is very relevant to what we are talking today.
[Doug]: Well, I think that's, that's an amazing thing to wrap up our conversation for today and really so, so happy to have you join us today. So happy to get to talk about your, your children and, and everything that, you know, you all the ways in which you've overcome a lot of challenges with your children to have two amazing children who are, who were certainly well-suited for lots of success in the future. I'm sure a lot of what you shared really resonates with a lot of other parents out there. And I really enjoyed speaking with you today.
[Nilam]: Thank you. Same here. Thank you so much for inviting me and giving me this opportunity, Doug,
[Doug]: And thank you to everyone who tuned in today. We will be back next week, same time, same place with an episode and continue right up until the holidays where we'll, we'll probably take a little short break there, but join us next week as well. And thanks everyone. Have a great weekend and week ahead.
[Doug]: Okay.