Join us as we talk with Olivier and Hilda Bernier, who share a very personal story about their child Emilio. They talk about their struggles to have Emilio be a part of a general education class and how it impacted them as a family. They have documented their fight and struggle to have Emilio, who was born with Down syndrome, to be included in an inclusive classroom in a thought-provoking documentary "Forget Me Not: Inclusion in the Classroom," that looks into the continued segregation of students with intellectual disabilities and examines an alternative approach where every learner is included. Olivier Bernier, is the producer and director of this award winning feature-length documentary and his wife, Hilda Bernier, is also a producer on the film and a former special education teacher in the NYC public school system. We hope that as you listen to them, as district leaders, school leaders, advocates, in whatever role you might currently hold, that you are able to gain insight into what needs to be our continued work, how we might impact our systems such that these struggles that Emilio faced and we know that many children like Emilio face all over the country are eliminated and the assumption for every child is that they are able to attend the school that they would have if they did not have a disability.
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Welcome to CollabCast.
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Very happy new year to all our listeners, I hope you all have a healthy, inclusive and joyful 2024 I'm Ruchika Chopra host of this series that we call CollabCast a resource from the urban collaborative supporting over 100 districts in 29 states across the country to build equitable and inclusive practices. We are here to listen to stories and personal experiences of people in our community, their successes, how they got there, and advice they might share with others who are facing some of the same challenges and opportunities they may have had. Each of our collab cast speakers connect us to the theme of the month that we are looking to explore with you all are urban collaborative members, you will have access to a scheduled Zoom meeting around this theme, and additional related resources will be shared. These topics concern issues that you have told us you are grappling with and want to learn more about.
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Today's session, we will be focusing on the experiences of one family and their journey of having their three year old child access inclusive schooling. In school year 2122 7.3 million children in the age group three to 21 were reported to have a disability in the United States, which makes up about 15% of all public school students. of these 15% of students. Only 67% were reported to be receiving an education in general education classrooms for more than 80% of their school day. For our students with intellectual disabilities. Only 20% have been reported to be in inclusive classrooms for more than 80% of their day. And for our students who have multiple disabilities, this percentage is even lower. Only 15% of them have this access. We know that we all are continually trying to move these numbers because we know that this represents the rights of our children to be educated with their peers like they would have if they did not have a disability. We know that this is hard work. But we also know that it is the work that we all have to engage in. Today we welcome Olivier and Hilda Bernier, who are here to share a very personal story about their child Emilio. They are here to talk to us about their struggles to have Emilio be a part of a general education classroom and how it impacted them as a family. They have documented their fight and struggle to have Amelia who is born with Down syndrome to be included in inclusive classroom in a thought provoking documentary Forget Me Not inclusion in the classroom that looks into the continued segregation of students with intellectual disabilities and examines an alternative approach where every learner is included. Olivier Bernier is the producer and director of this award winning feature length documentary and his wife, Hilda Bernier is also a producer on the film and a former special education teacher in the New York City public school system. We welcome them here today and hope that as you listen to them, as district leaders, school leaders, advocates, in whatever role you might currently hold, that you are able to get insight into what needs to be our continued work, how we might impact our systems, such that the struggles that Amelia faced, and we know that many children like Emilio face all over the country are eliminated. And the assumption for every child is that they're able to attend the school that they would have if they did not have a disability. With that. Let's welcome Hilda and Olivier, we are thrilled that you could join us today. Thank you so much for having us. Hi, rashica. Hi. So Hilda and Olivier to start off our conversation. Can you introduce yourselves a little bit more than I said, and for those who have not seen your documentary because there'll be some who have and some who have not. Tell us a little bit more about Forget Me Not and share with us on how learning that your son had Down syndrome impacted the way that you saw and see schools and the society as a whole today? Sure. Well, as you said, my name is Olivier Bernier, I am the father of a child with Down syndrome. And I'm a filmmaker. So that's what led to making a movie Forget Me Not inclusion in the classroom. You know, the process really started from I would say the day Emilio was born. I knew that I wanted to do something. Use my tool set which is filmmaking to improve the world and I didn't know what that would look like
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What I do know is that when Emilio came to us, I was just completely unprepared for what Down Syndrome meant, what kind of life he would have, and just had no understanding of the diagnosis. You know, years later, when I reflected on it, what I realized is that part of the problem is that I had never met anyone with Down syndrome, I'd never met anyone with a significant disability in my schooling. And I looked at it and my schooling was, you know, I went to a large high school, it was probably 2000 students in high school. So there must statistically there must have been children with significant disabilities, but I never saw them, you know, that led me to think that perhaps part of the issue why I was so unprepared for my own son, and why it was so difficult to get the news of his diagnosis is that I had gone to school with segregated settings. So I wanted to examine what is inclusive education, and how do we create the most opportunity for our son. And that's kind of what led to the making of forget me knot, which is a film that examines, as you said, inclusive education, what that means. And then it follows our own story of trying to get Emilio included in the New York City public school system. When Amelia was born, I was teaching in high school in high school in New York City, and I had a license on special education with a bilingual extension. So I was I was very familiar with the process, I had sat on many IEP meetings, I had written, countless IEP s, myself, and I had the opportunity to work with parents and other providers at the high school level. But at that time, I had never been exposed to what it was like for babies and preschoolers. So when, when Amelia was born, I decided to use my family leave to oversee all the services that Amelia was receiving through early intervention. That's when when the opportunity to make the documentary came about, but I started providing Olivia with, you know, ideas and my expertise as a teacher. But then, when Amelia was transitioning from early intervention to preschool, and things started happening to us, it became very clear to me that my experience as a mother was going to be pretty different from my experience as a teacher, and that we really needed to make sure that Emilio was going to be in a place where he was valued and, and provided with the experiences that every preschooler must, must have
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the opportunity to, you know, learn with other children his age, in, you know, with different learning styles. I think, that moment when when, when I had that realization really tip, the focus of our goals as a family for him. Yeah, it's interesting, right? I mean, as a parent, as a new parent, people struggle with knowing what needs to happen, right? Everybody's like, Wait, my experience is very different than my parents or my friends. But Olivia, you said something about the fact that you had not met someone with Down Syndrome and and heal they even though you had experience with students who had other disabilities, or maybe that disability, it's, you know, as a parent, there's really no rulebook about how this works. And what what happens. Who did you look to, to get guidance around this? Because, again, you know, we all build our communities, when our children are born as to who will look to for advice, who did you all look to for advice while going through this process? And knowing the struggles that you may may have later? Yeah, well, early on, as I said, you know, we were completely lost. We didn't know what the world could look like for Emilio and what really helped was us meeting other parents of children that had Down syndrome or their disabilities and starting to learn that it's not all doom and gloom, and that, Oh, wow. Like people can live really full lives and do amazing things. And they add so much to the world. And, you know, I felt ignorant in a way that I was learning that in my mid 30s, but, but I did learn it, you know, and that's what's important. You know, and I think that's going back to inclusive education. That's, I think that's one of the strongest benefits is that if you grow up with children that are different than you, you learn how different people live and what their strengths are and what their weaknesses are. I had never had that experience. So meeting other parents was really helpful. But secondly, I had this amazing opportunity to to make this movie which
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Really combined my career with my passion, which is my son, and became a full time job. And really what the documentary ended up being is my journey of learning about education and, and what inclusive education is and what it looks like when it works and what it looks like when it doesn't work and all those things. So, you know, I was really fortunate to meet some, some great people that you see in the documentary that really guided me and, for example, Thomas hare, I met him he was one of the first interviews we did. And I asked him some really basic questions. And he's a very, I mean, he was at the top levels of government, and that I was asking very basic questions like, What is ableism? You know, and he was very, very supportive and, you know, held my hand and explained to me a lot of things that I didn't know. And that was kind of the basis of my knowledge going forward and, you know, slowly met other people along the way that really helped formulate our opinion and inclusive education and what success would be for Emilio, I just wanted to add that I personally, you know, I was home with Emilio. So I was relying a lot on on the expert opinions of the people that were working with him. And then with, you know, I tried to put my faith on the evaluators, and so on and so forth. But then I quickly learned that I needed to readjust my expectations. You know, I you, I'm very grateful that Olivia got to meet all these wonderful people, because he kind of like pushed me to believe that we can actually achieve our goals around inclusion. So it was a good a good thing for me to have Olivia just kind of like, telling me to not give up. I can imagine. I mean, I can imagine that when you're hearing from people who you think are experts, people who are coming into your home, people who are working in early intervention, who I mean, again, I've worked with many very competent and good people who work in early intervention. But as a parent, you're listening. And you're thinking that that's the way that it needs to be. And there are many families who didn't have the opportunity that Olivia that you were able to have to be able to kind of broaden what you think are possibilities for Emilio, based on the ideas and based on the things that you heard from all these people, as well as your own experiences going through this process. What are some things that you think that families and not only families, but even district folks who are listening to this teachers that are listening to this might learn from would you all have already been through? Well, I think a lot of people don't know that this still happens. And I put myself in that camp too. Before it happened to us, I really thought it would be our choice whether we wanted Emilio included into an inclusive classroom, I really thought that we were the experts on Emilio up to that point, we had the vision for what we wanted him to grow up to be. And we thought that we were the ones that were going to determine his fate. And that was the furthest thing from the case, we really had no voice in the matter at all of what happens our child and you have to remember that this is we were talking about IEP for preschool here. So Amelia was not three yet. So I think that, you know, the biggest thing that, you know, everyone should hear is that segregation happens, and it's not a choice. I think that's the number one thing is that, you know, Emilio was told that he had to go to a segregated classroom because of the way he was born. And I think just that his fundamental core, that's wrong. There's just that's wrong. And, you know, I think that when you look at it just at the base level there, you know, I think that, you know, we all have to agree that that's not the right, the right thing, and then then we can find solutions. So this does still happen. And you know, I think once we you know, come to that determination that children shouldn't be segregated because of the way they're born, then we can talk about solutions. And I think that's one of the biggest things that I wish had happened in our first IEP meeting is that as they talk about the benefits of a small, segregated classroom, they also talk about the benefits of an inclusive classroom so that we can make an informed decision.
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Yeah, so that so that, you know, as families going in people who may not have had the kind of experiences that he'll they you brought as a former teacher, you then ended up bringing with meeting all these additional people, and learning and researching and all of that, that you given with the choices and you're given the information at a meeting where people who you then begin to start trusting and then you begin to start acknowledging and understanding where you
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A child might go, right. I mean, that's your first interface with the schooling system and education for your child. How do you build trust after that with a school system where right in the beginning, your voice is not what is considered, it's already predetermined? I can imagine that that as a, as a parent, that must have been extremely frustrating to be able to be in a meeting and being like, Wait, can we speak? Can we tell you what we think? So what what happened after that? What steps did you take? And what suggestions based on those steps that you might have for additional people who might be listening? So in the first place, I would, I would say, like that first meeting, completely destroy the faith I had in the process. Because coming from schools that were very inclusive, for my professional experience, you know, we seek to keep the students in what's known in in the city as ICT, integrated co teaching classes, because you're especially at the high school level, it's critical that they are in those settings. So coming into this meeting, and having my my trust in the process completely shattered was very disappointing. It was a good thing that we had the the advice from Sara Jo solo very she is she has become part of the family from advocate. She's, you know, we always talk to her, when we are making decisions when we have IEP meetings when we need to see how we're going to address certain issues that that come along the way. So having an advocate was very helpful for us, because the roadblocks and then the obstacles started really, really early. Coming into the into it, I was just thinking, Well, you know, he's, he's going to be three, and he's going to enjoy this first experience to be with other children and in a classroom, and he had already a very strong base. Because his early intervention providers were excellent, great, there was no doubt in my mind that he was going to thrive. However, I think that parents need to mentally prepare for disappointment, because especially when when there are visible disabilities, such as Down Syndrome and on other intellectual and developmental disabilities that can quickly put someone in, in a box that shouldn't be even a thing can be very frustrating, you know, setting up family goals and getting an advocate, like like Sarah Jolie said, you need to know what's your line in the sand, you need to draw your line and be strong when it comes to advocating for your child to knowing your rights, knowing that you have due process rights, knowing that you of course,
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that, that you have that. But then more than that knowing what is your goal for your child and for the education and not moving from there and saying, This is where we are not going to be flexible about it's what I'm hearing. But I also was wondering, how did you think about bringing in an advocate and I know from hearing other places that you've shared that it wasn't your fault, you didn't bring the advocate for your first IEP meeting, because you'd like you said, you knew that you were going in with this idea of trust. And you were going in with that idea of that. So if you can speak a little bit more about that, first of all, when when it comes to education, I don't understand half the acronyms. Let's just put it that way. No one does. I
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I am lost. So I was learning as we went, but you know, I was thinking I have the I have the best tool in the tool chest. I have a special education teacher as well.
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Who's been who's written many APs and understands this whole process really well. So, you know, we went into that meeting thinking that we didn't need an advocate. And we had spoken to Sara Jo before the meeting. And she was like, All right, let's say
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she was okay. She didn't say it like that. But she is just here with your faith, which I think is is nice that she she allowed you to have that experience. Right? How would How did you think about even reaching out to Sarah Joe? Was it connected with early intervention? Or was that something that Hilda based on your previous experience that you knew that you should maybe talk to an advocate and how did you reach out to her I actually didn't reach out to her Olivia met Sergio before I did, but you know, with the knowledge I had on Ida and the experience I had working with
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It is teams and families, I really believed that I could make it work all on my own. You know, I told Olivia, let's, let's, let's go with an open mind. And let's try. We had already talked to her and she gave us her take on what could happen and what they could have said and and all that. And it was like a bad car sales pitch. When we walked in there, they were just trying to sell us a segregated setting. And that's when, as the meeting went on, that's when I realized that the idea that he should be placed in the least restrictive environment first was not going to happen. Right? It was very, very infuriating for me, because they were not even considering to follow the law, as it's written in at age three,
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which is mind blowing, because you are not giving that shot. It's such a critical stage in development, that children are changing very quickly. And just having a battery of tests dictating what the placement should be. It was beyond my comprehension. And point, you know, I think it's you go into an IEP meeting, and I'm sure a lot of parents listening have had this experience, but they talk about data. Yeah, and, you know, data is really good to look at large systems, but we're talking often about a single child that has a ton of potential, as their own challenges has their own strengths. And it's easy to forget, when you start talking about data that you know, really what we're talking about is a human that is going to be really affected by this decision. You know, one thing about the New York City public school system is that and most school systems around the country is that once you're put into a segregated setting, especially with a significant disability, it's almost impossible to leave that segregated setting through your schooling. So when I spoke earlier about us putting a line in the sand and Sarah, Joe kind of telling us like you have to determine what that line is. For us, it was placement, because we wanted Emilio to start in the most inclusive setting possible before so that he would have an opportunity to be with other children and to learn from other children and to have people to model off of sorry, and have the similar experiences as other children, his age we're having, which is all of us as parents, were people in the community, that's our hope for our children, right, that they all have the same experiences and opportunities, and then what they make of it, is what they make of it. So thank you for sharing that. I'm wondering about, and I know that he's in an integrated classroom, how is that? Are you seeing the kind of benefits that you had hoped to see? Absolutely. Emilio eights currently in first grade. And he's in an inclusive classroom, he has plenty of supports, he has a one to one para that's assigned to him, we are working on learning how to use a communication device, that it's been used in so many creative ways by the staff at his school, it's, it's something that I'm very, very happy that that we're getting our hands on, it's a tool that, you know, he is taking advantage of, because you know, writing can be very difficult for him. So they are teaching him how to type his responses on the communication device. His expressive language is becoming more intelligible and clearer because he's, you know, he's listening to these words. And he's also, you know, putting all these sentences together in the device. So that's wonderful. And beyond that the relationships that he's creating at the school are phenomenal that the teacher is telling me that every morning, he has to say hello to absolutely every single person on the hallway. So
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it takes him like 18 minutes to hug and kiss everybody be sure all the people who is hugging and kissing are thinking that this is the best part of their day.
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Absolutely, he is you know, it's beautiful to see how how they are embracing who he is, how the teachers and all the specialists in the school are working together to build up on the strengths that he has. And in from there, they tackle the areas of growth so far, I am very, very happy
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Happy with the things, how things are happening up to this point? And what are you looking for in the future? For him? Are you thinking thinking about like, what this looks like in middle school and high school? All those things already coming? And things that you're worried about? Or are you looking forward to now that you've gone through this process and know what you need to do to be able to continue this journey? Well, I think one thing that we've learned along the process, or at least one thing I've learned is to not overanalyze too far down the road. Me, Leo's going to be Emilio, that's fully boy said since he's born, and you know, what his needs will be in 10 years from now, it's just very hard to predict. But what we can do, and what we can control is today and tomorrow, you know, we know that what's working, what's not working, and we're constantly adjusting, the biggest thing that I have to always remember is that, you know, we're not trying to change who Emilio is, Emilio has Down syndrome, he's never going to be like, you know, a typically developing child, he's, he's different. And that's great. And we want to celebrate those differences. And we want to, in some ways, he's augmented, you know, and we want to, we want to push him to explore what he's interested in and be the best version of himself. So, you know, 10 years from now, I hope that Emilio is able to advocate for himself. That's one of my big goals for him. I hope that he takes our example and for us, you know, constantly pushing for what we think is right for him, I hope he takes that internalizes that and does it himself down the road, because you know, there will be a day when we're not there to do it anymore. I think that's one of the things that I'm very focused on. But you know, what schooling will look like 10 years from now, it's really impossible to say, I think we hope it's inclusive, inclusive. Yeah, I can imagine but but like you said, you know, it's hard, it's hard to predict where our children go where their journeys take them. And, you know, be the best we can do is tweak our and be flexible about what we think we can do to help support them in wherever they're going. So I think I just go back to what you said initially, in our conversation around the idea that the first place that you think about is segregated, as opposed to inclusive is the place where you were completely surprised about right and completely caught unaware with, because I'm sure they talked about the kind of support that you'll get, and that in a smaller environment, there'll be a lot more focus on some of the skill development and things like that he needs. That is not that you you're arguing against that you're arguing about the component or you fought against that component of where that can be provided? And how and when, how early that can be provided in what kind of relocation of so whether services be provided? That's exactly I think that our schools are really, you know, the first entrance into society. And Emilio is that his first time meeting other people outside of our family really in a significant way and spending the large part of his day outside the house. You know, how can we have an inclusive society if our schools aren't inclusive? How can we include people with disabilities, if they're told their whole lives that they don't belong with other people. So from a fundamental standpoint,
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our children with disabilities, I believe, have to be included if we want to have an inclusive society. You know, and for Emilio, what that looks like is I want him to be in an inclusive classroom, because I want him when he's an adult to know that I belong, I belong with everybody else, I might be different, but I belong. And that's, that's what I want his takeaway to be. And I also believe that it's very important that that other children are exposed to children like Emilio and that are exposed to children that are nonverbal, and that are exposed to other children that might have some physical challenge challenges, where we need to revise the way we are structuring our classrooms and our buildings and everything. Because we all have to navigate these spaces. We all have to navigate the school buildings and the town center and the shopping malls and the subways and the public transportation, you name it. So it's important that that the new generations are aware of all these differences, so that they can make it better in the future. So when they are planning for for buildings or schools or playgrounds, they are thinking of that friend that they had in school that needed something else. Because at the end of the day, we all have special needs like you know I have to work
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So I can see when you if you have a fall, you have to put out a bandage or something and you need some extra steps to take care of yourself, you know, like we all need to find ways to improve our lives. So I believe it's very important that we create these opportunities so that the future generations can create these spaces and these opportunities for each other, make the communities and make our society more accessible for all of us, right? So that we can all be the best selves that we can be at whatever age that and whatever time of our lives that we're trying to get access to something because at some point, you were talking about classes, you're talking about hands, but at some point, we're all going to reach a point where access physical access, intellectual access to certain things might become more difficult for us. And if a society is created around people who have those differences, and it allows us to all in our in our lives, to be able to create additional access and better access to a better quality of life, right? I mean, we're all looking to have a better quality of life. And that's what listening to you both and watching Forget Me Not and listening to other places that you've shared, your information is a at the end of the day that you're looking for, for your son to build a quality of life that is similar to other children's quality of life, and the similar access and similar opportunities that they have. So we thank you for that. But before we finish talking, I do want to ask both of you, before we end our conversation, is there a piece of advice, you would like to have educators, teachers, other staff members to know, when they meet how they might want to think or how they might want to create the spaces that they're in? When they meet a child like Amelia in their classroom, I'd say one of the most basic thing that educators can do is drop those preconceived notions that Down syndrome is this or that and to give themselves the opportunity to get to know the student first, if they give themselves that opportunity, they're going to be better teachers. And not only for for my child, but for everybody else. So I think it's important that educators come with an open mind and an open heart to children like like Emilio and other children that might seem challenging, but it's, it's somebody in the documentary said, like, it's not always as bad as it looks. On paper, you know, I have to really watch to be able to see who said that, but go for it. Yeah, get to know your students, like an open mind and keep an open heart. I like that. Levy. I think one of the biggest pieces of advice is what I said earlier, that each child is a child that they're not a data point, you know, and, you know, as a dimension, what what might be on paper is not necessarily who they are as a person, I think is really important to remember. But also, I think it's important to really remind all the educators out there that there's academics are super important, but there's a lot more that's taught in the classroom, that's social interactions, that's how to be around other people, how to empathize for other people, how to learn from other people. And those are skills, soft skills that you're going to take for the rest of your life. And those are equally as important. And I would argue in my own career even more important. Yeah, you know, I would just remind everybody that's, you know, part of the IEP process and general education process that that's really, really valuable. I think it's really valuable for Emilio and I think it's really valuable for all the other students he's in a classroom with. So yeah, that would be my one piece of advice. Nice. I love it. Thank you. Thank you, Olivia. And thank you for taking the time to share with us. We assure that we will have many people who listen today who would now want to go and quickly watch the documentary and learn more about your story. We will provide the link of your website and ways to watch your documentary but if you want to share something about how people can get access, please feel free to share. Share. The film is available on Amazon it's available on Apple basically all the streaming networks for rental and it's actually available for free on Tubi there's quite a few movies with the name Forget Me Not ours full movie name is Forget Me Not inclusion in the classroom if you're having trouble finding it, and you could go to our website where there's links to the movie, it's FM n doc.com, or Forget Me Not documentary.com. And on the website, there's a lot of resources for parents. There's resources for educators as well. And there are links to learn how to hold your own community screening if you feel so inspired because I think one important thing to mention is that although this movie is very poor
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are similar to us. And it's you know, focuses heavily on Emilio Emilio's story represents so many other children, you know, we made the movie and we put our lives out there so that we can affect change. And that change can only happen if people share the film. So, you know, we all have a part to play, and I hope that our film can make a difference. Thank you. I glad that you mentioned that because one of the things that I know that I forgot to say is that you also talk about other children's lives in their you, you go through and you have interviews with other families who also have children who may be students with intellectual disabilities or otherwise in that significant disability category. So just wanted to mention that. So it's not only your story that you speak about, you also talk about some other families. We hope that learning about your story will help our listeners to reflect and rethink their practices and systems and see how they build their systems to be mindful of your experiences and the experience of other families like yours to continue a conversation about what schooling looks like for our students with intellectual disabilities. We will be hosting a panel discussion on January 30, which will be facilitated by Dan Habib panel discussion will be focused on inclusive post secondary education for our students with intellectual disabilities and Hilda and Olivia, you're welcome to join that conversation. If you would like to, we will send you that information to register for this upcoming zoom talk, and other upcoming urban collaborative events and resources. Go to our website, urban collaborative dot o RG, or our Instagram page, urban collaborative ASU and click the link in the bio we look forward to hearing from you all our listeners and how Olivia and Hilda's experiences connected with you. But before closing our collab cast for today, we want to again thank Keith Jones of Kpop for providing music, his information will also be shared on the website. Thank you. Thank you, Olivia and Hilda and thank you everyone for listening. Thank you for having us for having us.