On this episode of Change Makers, we’re talking about how to advocate as a parent or guardian for your child. We will talk to APH experts about how you can help your child get the resources they deserve and how to choose the best educational devices to fit their needs.
Podcast Guests (In Order of Appearance)
Additional Links
On this episode of Change Makers, we’re talking about how to advocate as a parent or guardian for your child. We will talk to APH experts about how you can help your child get the resources they deserve and how to choose the best educational devices to fit their needs.
Podcast Guests (In Order of Appearance)
Additional Links
Welcome to change makers, a podcast from APH. We're talking to people from around the world who are creating positive change in the lives of people who are blind or visually impaired. Here's your host.
Sara B.:Hello, and welcome to Change Makers. I'm APH is public relations manager, Sara Brown and today we're talking about how to advocate as a parent or guardian for your child. We're going to talk to APH experts about how you can help your child get the resources they deserve and how to choose the first piece of access technology for your child. It's very important for children to get everything they can to be successful in the classroom. And that's why we have Connect Center Director, Olaya Landa-Vialard to talk about advocating concerns for parents and what services are offered through APH. Hello, Olaya and welcome to Change Makers.
Olaya L.:Thank you for inviting me, Sara. I'm so happy to be here.
Sara B.:What are some common concerns you've heard from parents and what do you suggest to help?
Olaya L.:Concerns that I hear from parents or at least that I've heard over the years, um, tend to deal with navigating the system. Um, the special education system has its own language, you know, some would say, um, I think one of the poems that really, um, lays that out for individuals is called"Welcome to Holland." And, um, it it's a poem you can find if you Google it online or on YouTube, there are, um, different versions of it being performed by different individuals. Um, and it's just basically, you know, talking about the, uh, the expectations that one has when they're getting ready to have a child. Um, and having that, um, expectation changed once a child is born with a disability and, you know, learning the different, um, the different systems that you have to navigate is, can be really overwhelming and confusing. Um, and, and then once you're dealing with that, you know, you're talking medical and all these other systems, but then once you're starting to deal with, um, the school system and that includes, um, early intervention. That means early intervention is a lot of parents don't even know that that's a, that's a service that they can get from the minute their child is born. Um, you know, in the home from birth to three years old, um, there are services educational services that can be, um, performed in the home to help teach parents about how to work with their child who is blind or visually impaired, uh, or has other special needs. And, um, you know, there are a lot of times when a child is born with special needs. If, if they, you know, have blindness or any other, um, impairments that may be impacting them immediately after they're born, it's understandable that the concern burn, you know, immediately has to deal with, okay, I want my child to live and the medical professionals around the parent and the child, of course, that's their priority as well. Once the child is stable and the parent is ready to, uh, take the child home, that's when early intervention can come in and begin to help the parent. And if they don't know about that service, it's very, it very likely that, um, bay the child can be home with the parent for the first three years of their life. And then eventually if they go to preschool, then start receiving services, developmental services for their child. And so those three years can be last, uh, as far regarding development, if we don't have interventions that begin as early as possible in the home. And so parents don't know about that. And a lot of times, and, and physicians and doctors don't necessarily know about that either sometimes, sometimes they have a misconception that early intervention can't help make their child see better. And that's really not the purpose of what we do in an early intervention to get into the home as soon as we can, uh, to start helping the child and the family, uh, learn to work together. Um, a lot of times it's parents, uh, again, it, it, it wasn't expected, uh, learning how to navigate this new world of having a child with a disability can be overwhelming and sometimes causes of caregivers and families to, to, to shy away from interacting with their child. Uh, so that's one of the things that, that I know I hear from parents about once they find out about those services, like why didn't they know about it? Um, and so that's also part of navigating the special education system, and it can be very overwhelming for someone who's not trained in special education. Uh, and, and also, you know, you think about those parents who are, um, English language learners, it's really hard, um, or our families who are immigrants, who are refugees, um, who are asylum seekers. It's really hard to navigate the system. It's hard enough to do it in English, but when you're doing it in another language that just, they're not familiar with these terminologies, and they're not familiar with the systems, that is that that's a real big concern. And I know I hear that concern quite often, um, from our families and from, uh, other individuals who I know and their families, other teachers of students with visual impairments. And so that is just one of the biggest concerns I think, that are trying to address link through APH family connect, um, through the connect center. Um, but also through a lot of the webinars and things that we offer. But I'll get to that in just a second. I think one of the other, um, concerns that I hear from families, um, from caregivers is, um, you know, trying to understand, um, the eye condition and how it impacts their development. Um, yeah, they are also trying to figure out like, how do I get help for my child? Um, and then of course, one of the really big concerns his parents have is whether or not their child will have a quote unquote, normal childhood, uh, and be able to grow up to graduate, get a job, have a family, you know, the types of things that we see all other children, uh, an all other kids grow up to do. And that's, you know, that's a, parent's hope, I mean, dreams for every one of their children. So those are big concerns that, that we have, um, from parents when we're out there working with, with their kids, um, is yeah. You know, w w what's my child going to be able to do in their life if they can't see, or if they can't hear, or if they can't walk, or if they, you know, all these other issues that may be impacting their, um, their development and their ability to develop as a, as, as typically as other children without disabilities. So a lot of times I think the issue comes down to, with those concerns is not knowing what, what you don't know, which then leads to knowing what questions to ask. Um, and, and, and you, you can find that in, in many situations in life in general, but when you're dealing with the special education system, and you're dealing with B outside of the special education system, you know, medical, um, medical systems and therapy systems and all of these things, it's, if you don't know what you don't know. So you're, you're, you don't know about blindness, you don't know about, um, you know, how that's going to impact, um, your child's development. Uh, you don't know which specialists, uh, you, you need to help your child. So you don't know the questions that you need to ask, and that can also play a part into these concerns of, well, what what's going to happen to my kid. Um, and you, that's where there are some, uh, there are advocates, special education advocates that can help families. Um, though they come into play to help parents and caregivers understand the system, understand their rights, and understand the rights of their child to receive a free and appropriate public education. That is a big, um, that, that is one of the big acronyms that, um, is in our special education laws and in our parent procedural and rights booklet that every state has through their department of education. Some states have the parent procedural safeguards, um, in multiple languages. So that does tend to at least help bridge some of that gap between the language issues. However, parents have to have access right to internet. They have to have a computer to be able to access that. And yes, there are, they can go to libraries to access computers and internet if they need to. But then now we're also looking at the downloading a booklet with all of these, these terms and these explanations of systems that they're not familiar with. So even with that, we're providing information, they can get, they still need someone to help them navigate that. And parent advocates can do that. Um, and in just a little bit, I, I'm an outgoing through some of the resources and where parents can find, um, advocates who are trained in trying to help parents and teach parents how to navigate these systems.
Sara B.:What can a parent or guardian do for their child's teacher?
Olaya L.:So what parent or caregiver, what they can do for their child's teacher, um, is, is establish an open and a relationship with that teacher, um, know how to get ahold of the teacher so that you can call and express concerns that you may have, or call and express happiness and appreciation for something they did with their, with your child. That was like really great that, um, you know, made it, made them stand out for, you know, for whatever reason, um, you know, if it was a special activity or, um, they did some kind of special, um, uh, you know, special, um, award that was given maybe to the, to the teacher, to the child, you know, there's just, there's other things that can, uh, you, you can show your appreciation for what the child, what they are doing for your child, right. What the teacher's doing for your child. And if you are sharing your appreciation for, you know, to the, your TVI or the teacher of students with visual impairments, and they can see, then you are paying attention to them, then they'll start really paying attention to your kid. Um, and so, you know, it's, it's, there's this give and take relationship. Um, but I think if, if you are able to really get to know, um, your, the person who is providing services to your kiddo, um, that right there is step number one, you want to be able to do that. Um, then with that, that opens that communication and you can find out, well, what are you working with? Where do, what are you working on with my child at school? Um, what skills, or what should, what are you focusing on so that then I can continue to help focus on those things in the home, so that they're getting reinforced all the time, not just when the child's in school, but they're also getting reinforced when the child's at home. I think that that's really important because we want kids to be able to generalize skills from the home to school and from school to home. And so having that open communication and being able to talk with your teacher about what they're doing at school and how you can support that at home, I think is a really good thing, because again, it, it helps the teacher understand that you are paying attention to what's happening and that you want to be able to help him or her with what they're doing at school. You want to be able to support them with those that the same, um, skills that they're working on at school. You wanna be able to support that at home, because then they'll start seeing the progress. Um, it's hard to, to, to really get the progress going if the only time that your child is working on a certain skill is only at school. So having that relationship I think can really help your child, um, start to progress can really help identify other areas that maybe need to be addressed. Um, and, and so it also shows your involvement, um, because you do, you, you, you have a right to be a part of your child's educational team. And if you are in communication with their TBI, you're able to really have, uh, a deep level of involvement in what educational decisions are being made, um, for your child and about your child. So I think that's really important if you have an older child, um, you know, being involved not only with the TBI, but being involved with making sure that the older child is also involved with, um, with their own education and talking to the TBI, and also then, including you like having these, having phone calls together with the TVI, reaching out, um, double checking on, you know, what are there, are there certain things that the TVI need so that, you know, they can help your child be successful? Um, you know, and, and if they're, if the TVI needs some help with, uh, advocating for your child, um, that's something that you can learn from, from the TVI, and you can make that phone call to the Special Ed director or to the administrator for the school saying, you know, my, my child is, is, uh, is, is, uh, is blind and, or in visual or visually impaired and his, his or her teacher is indicating that they need certain materials or certain types of supports. And my, I see my child is not able to get that. So can we meet to discuss how we can help the teacher get what she needs or he needs so that they can then help my child get what he or she needs. And so that's what parents can do, um, for, for your child's teacher is having that open communication, um, really, and truly will help buy in on both ends from the teacher and the school and, and your end. And so you really want to make sure that that's wellness established
Sara B.:What should a parent or guardian do if they hit a dead end?
Olaya L.:So one of the first things that I recommend, um, to families who feel like they're hitting a dead end, is it, and not only myself that recommend us, but other, um, parents who have gone through situations like that is reach out to other parents, um, you know, find out what they did in that situation. There are parent groups on Facebook that you can go to and ask questions and you'll get all kinds of, of guidance. Um, in response to your question, um, there are, um, there are parent groups that are specific to, um, parents of children who are blind or visually impaired, um, like the national organization of parents, of blind children. Um, the American council for the blind also has a parent group. Um, there is a parent group called thriving blind on Facebook. And so reaching out to other parents is really a good first step because you're dealing with people who have gone through exactly what you're going through, and they can help guide you through what they did, and that may help you figure out what you need to do. And in your particular situation. But in addition to asking other parents, um, you can visit, there are regional parent training assistance centers online, um, and, and so you can, um, just visit a regional parent training assistance center. If you Google that it'll point you to the regional office that is, um, for that you belong to, depending on where you are in the United States. And then you can start downloading or, or obtaining information contact information about who you can call to get help, um, to help resolve this dead end, that situation that you find herself in. There's also, um, the center for parent information and resources online. And so you can also, um, Google that, and, and in the show notes, there will be, I will have the links for these, um, for these resources for you, so that you can reach out to them. If you find yourself in a dead end situation and they have other information and other, um, contacts, um, that you can reach out to, to help get you some help for that. Um, and then of course, um, you know, there are the local special education parent advisory council. Um, so that, that as well, there's a whole, that's a whole nother group that you can find online that has put together resources that has contacts that has webinars trainings for parents. I mean, there are all these things that you can go to, to help get you information to help you work your way out of a dead end. But I guess too, after talking to, you know, the first step, like I said, talking to other families, uh, or their caregivers, other individuals who have been in the situation that you find yourself in, um, of course, you know, talking to your, the administrator, moving from the administrator to your, um, the school district level, special education administrator, um, and then, you know, if nothing is happening there and you're still hitting those dead ends, then you know, you move on to what I was just mentioning about the parent groups on Facebook, getting their advice, um, you know, do going and visiting those regional parent training assistance, uh, technical assistance centers, uh, local special education, the parent advisory councils. And then of course we do have a state level, um, special education ombudsman. Every state is, uh, should have one. And so you can always contact your state board of education and ask to speak to the special education ombudsman, and that person will help with, uh, would help you find your way out of that dead end by, you know, through mediation, um, through having conversations with the school, um, so that you can work through, um, the, the issues that are happening because in the end, you're trying to help your child. And, and that's what all of this is about. And, uh, th the ombudsmen are there. Those are individuals who can help be the objective person in the room, and be able to look at the situation from, you know, without the emotions that can, you know, can be involved in, in situations like that when a parent hits a dead end. Um, so that's, that would be my, um, advice to you as a parent, is to go through that, that, that these steps, um, to help you figure out or get out of this dead end situation. And I know it's hard not to be emotional because you're dealing with your child and, you know, I'd get emotional for my child do. Um, but I think trying to keep it from getting, um, you know, contentious and trying to keep it from, uh, getting just emotional, I think can help. And that's where ombudsmen, um, and, and other organizations that you may reach out to, you may be able to step in and help, um, because it's just really hard when your emotions are involved in it. And, but it's totally understandable too, to have emotions involved. So, uh, it's, it's nice to have the outside help to be able to try and be objective and work through work through the problem.
Sara B.:What are some channels a parent can use to advocate for their child?
Olaya L.:So some of the, um, channels that a parent can use to advocate for their child, one would be going through your, uh, teacher students with visual impairments, right? Your TBI, especially if you've established that, um, that relationship, that community, that open communication relationship. Um, and, and, and also part of the open communication is being honest with the TVI, if you are not happy with something that's happening or would like, would like to see something different, being open and honest in calling it, like you see it, um, uh, which is something that, uh, another parent of a student with visual impairments as a written for family connect, though, some of the advice that she's given, um, her name is Emily Coleman. And, um, you can find actually her blog about, um, advocating for your child on family connect. And I'll talk about that in just a minute on the, how on the resources that we have through the connect center and family connect, but going through the teacher and, and calling for an IEP meeting, um, because anybody, you can call an IEP meeting at any time, if you have concerns, and you want to talk about an advocate for your child. Uh, so going through the teacher, going through an IEP team in the committee meeting and, um, expressing your concerns and, and having all those concerns documented, um, and, you know, and make a plan for adjusting and, and addressing those concerns and adjusting, um, the education, the educational plan that you may, you may have issues with. Um, and of course, going from that to the administrator of the school of the administrator for special education at the school. Um, and of course then if that doesn't work going to the special education district office or regional office, um, you know, just kind of working your way up the chain. Um, and, and I know it's a lot of work to do that, and it can be exhausting mentally, emotionally, physically doing all of that, but that is, that's just, you know, part of being an advocate for your child. Sometimes it just, it takes so long and so many steps to do it, but in order to really, um, get somewhere with the advocacy, you've got to make sure that you've gone through these steps, because if you don't, they're gonna, people will say, or, you know, um, or the school district will say, well, we didn't know about this. Like the parent never came to us with it. Well, if you go through these steps, you're documenting that you have brought up the issues, uh, with the, you know, at the school level with the teacher and then with the IEP team, and then with the administrator and with the, the special education administrator for the district or for the regional co-op, um, you know, working your way through that. And then of course, uh, getting a hold of your state special education ombudsman, and you can find that information by going to your state board of education website. Um, and also when you go to the website, you can get a copy of your procedural safeguards manual. And in there, it has contact information about who to contact when you are hitting a dead end or need, need help for, you know, for you, for you and for your child's situation. Um, and then of course, mediation is also, um, a channel that parents can go to and you have a right to mediation, which basically is putting the two sides together. And having someone try to help mediate the issue, find a common ground, find a solution to whatever the issue is. And ultimately if mediation doesn't work, then parents have a right to, um, go file a due process hearing, uh, or due process case with the, with the, the state, with the school district or against a school district, I should say, um, or against the, the, the actual school itself. So those are some of the channels that parents have, um, to go through. And again, we have, um, on family connect on the APH, um, connect center, family connect website, we have lots of information about those channels. How w how do you find out where the, you know, who, who is in charge of the state special education ombudsman office? Um, and so all of these things are listed out for you in different articles and blogs on our websites. Now
Sara B.:You're with the Connect Center. So tell us about the services offered from the Connect Center?
Olaya L.:So there are lots of different services and resources, and I'll try to kind of condense them as much as I can. And, um, families can, families, caregivers can, can, uh, visit our website, uh, when they, when they get a chance. And so first thing we have is, um, an Information and Referral Line. So parents can call the 1-800-232-5463 number, and I'll repeat that it, our information and referral line it's 1-800-232-5463. And that number is, um, staffed from 8:00 AM to 8:00 PM Eastern standard time. And parents can call to ask questions about where to find services, resources, um, you know, what, uh, what school did, what, what can be offered, uh, for different, um, different regional services. Um, you know, how, what phone numbers are there for parents to contact the state, contact different, um, community resources as well. And so there's that one thing that we can offer, um, then also part of the connect center. We also have a community calendar where parents can look and see what types of activities are happening, uh, in their area, and, uh, sign up if that's what, um, the activity requires, but at least they get an idea of what is happening around them in their area that maybe they can attend with their child. So, and also that they can find out about, um, any conferences or parent training, um, that's happening. And so the, we have the ConnectCenter calendar is also they're available. The FamilyConnect, um, their website is, uh, FamilyConnect.org. And so, uh, that will also be in the show notes, but, uh, I'll, I'll just spell it out for us here. It's family F a M as in Mary, I L Y connect C O N N E C t.org, O R G. And that if you go to that website, you, then you will get to, um, an area where you see a drop down boxes about, uh, after the diagnosis, you can browse by age, if you have a little one, or if you have, um, a, uh, a middle-schooler elementary schooler or a high schooler, um, you know, someone who's are in that transition age, uh, that 14 to 22. And so you can actually, um, break down the information that you would like to, to read about and find out about. And so that we have that you've got, uh, an education time that goes through about, uh, knowing your rights, uh, explains a little bit about IPS or ifs PS, depending on the age of your child. Um, what are, uh, information about your, the IEP team and placements assessments, there's tips for families? Um, we also have a tab, a dropdown tab for, uh, information about multiple disabilities and assistive technology. Um, you know, what to do after diagnoses. We have success stories that are, that are there. We have a student, uh, who, who went through the school and she's blind or visually impaired herself. Um, part of, one of the other success stories that we have, there is a parent along with their child talking about, um, family connect and how family connect helped them navigate the system. Um, there's information about how to work with your child's medical professionals, um, how to adapt her home, where to find helpful products and toys, um, and you know, what, um, what the emotional impact can be on families, because sometimes you don't realize how, um, how much having a child with a visual impairment or blindness can affect the family emotionally, um, because we're trying to get through day by day. And, and it's important to recognize that and, and try to find information on how to help navigate that. And of course, finding information out about your child's eye condition that that's really important to know for families and caregivers, because we want to know if the child's eye condition is stable, is it, is it progressive? Does that mean that, um, over time they're going to lose more of their vision. So then I need to know how I need to make adjustments for, um, for my child at home. And what does that mean for my child's education? How is that going to be addressed? So there's, all of those issues are, are talked about, um, and on family connect. And then, um, of course, one of the big things is, you know, an overview of the services for children who are blind or visually impaired, again, that goes back to the systems, um, you know, the being, uh, not being familiar with the special education system on family connect, we have some blogs and articles that help walk you through some of the services that are available, so that then you start learning about, about the system, and then you can learn about that, but, and that helps you figure out what questions you need to ask to help help in developing the educational plan for your child. Um, I think one of the other really big things that we, I really, um, am proud to have on our family connect website is this downloadable toolkit for parents about an overview of the service system for children, with blindness and visual impairments. So you can download that, um, that tool kit and have it with you, and that will help guide you a little bit and give you the, the, the knowledge that you need to be able to ask a question that you need to ask, um, that will show the IEP team, uh, and those working with your, with your child, that, you know, um, w what is, what is, what the system is about, what the system can offer, so that you're familiar with it. You, you can show that you are educating yourself about this. So it's not that things are happening to you or to your, your child, things are happening with you and with your child. That's a big difference. So having the toolkit and having read it and, and having your, um, you know, your, your background knowledge in it, it will really, really help you advocate for your child. Um, and then one of the other things we have is a parent support group, um, that meets the first Wednesday of every month. Um, and this is done in partnership with the Chicago lighthouse for the blind. So if any listeners want to attend these meetings, um, you can email us at ConnectCenter@aph.org, or you can give us a call on our information and referral line at 1-800-232-5463. And when you, uh, give us a call or send us an email and just let us know that you want to be put on our email list, once you do that, then every month we send out an email blast with, um, the different events that are going to be happening at the APH ConnectCenter. And so when we do that, you'll be able to see a registration link that you can click on and register to be a part of the parent support group. Um, and then we will send you a zoom link for you to either log on via computer or call in on your phone. Um, if you don't have access to a computer or to the internet, you can still participate in the support group by using your phone. And so that, that's another, uh, another benefit to, uh, what Family Connect offers to our families who are out there and trying to learn how to navigate, uh, the systems and how to navigate life with a child who is blind or visually impaired. So we're really proud of having that support group, the one of the other good things about the support group. It is not a recorded meeting, so it's not like anybody can just go and listen to the recording of, of the families who, who were on that call or in that meeting, talking about sensitive issues. Um, and because we don't record these meetings because we want families to feel comfortable expressing their concerns, their frustrations, um, and we also have a psychologist who, a clinical psychologist who attends these meetings, um, to kind of help families who may be dealing with some emotional issues work through those issues during these meetings. Uh, and it's also good for families to meet other families who are in the same situation that you're in. And so we're really proud to be able to offer that and partnership with the Chicago Lighthouse for the Blind.
Sara B.:And is there anything else you'd like to say about advocating or the ConnectCenter or FamilyConnect?
Olaya L.:So I think one of the things that I'd like to end this width is, um, I'd like to end this by kind of going through these, um, these four things that parents feel are important, um, for families who have children who are visually impaired or blind. And one of the things that, uh, was listed in an article, um, in Scholastic, uh, in the, on the, I'm sorry, on the Scholastic website, um, was that other parents are your best resource. So when you walk away from this podcast, remember other parents are your best resource. They have been through what you're going through. Um, some of them have actually created support groups that you can join. And, and, and like I mentioned earlier, the thriving blind, um, Facebook page, the national organization of parents, of blind children, um, and, uh, AC the American council for the blind has like as their, um, their parents group. And so there are all these different, uh, organizations that you can access when you are working through other parents. Because again, they've been there, they, they, they they've gone through, they have, uh, you know, made the mistakes and have, uh, and learn how to get over misteaks. And so you by going to other parents as a resource, you're kind of there kind of helping you avoid the pitfalls that they had, that they had to endure. Um, you know, and also by doing that, you are expanding your, your social network, um, emotional and social network. And so that's one of the things that a parent recommends. Um, and for number two, they talk about there's no silver bullet. Um, you know, some parents, it, one thing works for one family or one child and even, and another doesn't work for that same family or that child. Um, even you might have children who have the same type of visual impairment, but still are very unique in their own ways and have very unique needs. So remember there are, there's no silver bullet, your child is individual. There's no one way for something to, to happen or a system to work for your child. So you've got to make sure that you are looking at the end of your individual child, even if you are, um, getting assistance or advice from another family. Um, always make sure that, that, that information you take and look at it through the lens of what your situation is. And so that's another piece of advice that came from a parent from the article that I'm, I'm referencing. Um, the third, the thing that this parent says, um, to other parents is don't take no for an answer. So if you find yourself in a city situation where you, you need your, you know, your child needs a certain service or a certain, um, you know, activity or something that you feel is important for them, for their, for their developmental growth, for their educational growth or academic growth, um, don't take no for an answer. You need to ask the experts, ask other parents, um, you know, do some homework and make sure that you can come to the table with solutions. If the, if you are getting know, then come to the table with, well, I see, I understand you said no, but here are some options that we may be able to try instead of St just taking no, getting angry, and then, you know, trying to go then through mediation and all these other systems, try to try to problem solve and come back with some positive information. Some, some solutions that maybe people didn't think about. And so not taking no for an answer is, is another real big one, a big piece of advice that this parent has given. Um, and then the final and last important piece of advice, um, is you are your child's biggest advocate. Um, nobody else is going to be able to advocate for your child like you will. Um, and so many ways you probably the most important member of your child's IEP team of their educational team, because if somebody disagrees with, if somebody around the table on that team could be the speech therapist could be, um, it could be the TVI disagrees with anything, a one they can disagree and everybody else agrees. Then that plan goes well, we'll move forward and go through. But if you disagree as a parent, that's when, when the breaks are put on and we have to make sure that we are addressing your concerns and that you are being heard. And so you are your child's biggest advocate. And so if you come to the table with, with knowledge, with, um, support and information that you have researched, um, from some of the resources that I've provided, that will really help you advocate for your child again, better than anyone else can. I mean, we really would like for parents and schools to work together to address the child's learning needs, you know, and create, uh, a meaningful education plan for your, for your child and for the, or for the child. Um, but sometimes it, it, it, it doesn't always work so smoothly. So you have to be the advocate. And so always remember you are your child's biggest advocate. So please make sure that you visit our family connect website@familyconnect.org, to get information about, um, tips for families of children who are blind or visually impaired, um, and six ways, six ways to help the school own your child, who is blind. That's the, an article by Emily Coleman. Um, there are, um, lots of blogs and other articles that would be very helpful for you, for families, for caregivers of a child who is blind or visually impaired. So again, please make sure you visit family connect so we can help you, uh, learn how to learn, how to advocate for your child who is blind or visually impaired, because remember you are your child's biggest,
Sara B.:Thank you so much Olaya for joining us on Change Makers.
Olaya L.:Thank you, you all for listening, and I hope that this was helpful for you. Um, and, you know, thank you for having me. I really appreciate you asking me to come on on the podcast and try to, um, help our parents learn about how to be, you know, the child's advocate, because it's really important. And I really appreciate the time. So thank you so much
Sara B.:Up next. We're talking to Leanne Grillott. We'll provide some insight about what you can do to advocate for your child. All right, we have APH is National Director of Outreach Services, Leanne Grillott. Jello, Leanne, and welcome Change Makers. All right, glad to be here now, as a parent advocating for their child, what are some things a parent should keep in mind when their child has a new teacher, or is transitioning from one school to another?
Leanne G.:Definitely parents should be involved in understanding if they're new teachers understand their student has a, either an IEP or a 5 0 4, which, uh, tells what the student needs to be successful in included in the classroom, knowing that your teacher has that copy is really important. And it could be, yes, of course, it's the school's responsibility to hand it to those teachers, but there is nothing wrong with a parent saying, Hey, and by the way, I am just going to hand this piece of paper to you so that you really know what my student needs to be fully included in your classroom and successful.
Sara B.:Now, what does advocating for your students look like you've been in this field for a long time, and every student is different,
Leanne G.:Quite a few things. There tends to be more advocacy for students in the younger years. So you tend to see parents much more involved in your kindergarten through probably about six or seventh grade. They're just more involved. Maybe it is cause they're younger kids and all parents are a little bit more involved at that point anyway, but there, there does seem to be more of that. And there tends to be a little bit of a lessening at the high school years. Now, the difference is the more complex a student, often the more advocacy a parent feels the need to do so as a student with more complex needs. And on top of that, also a visual impairment. You might see more parents involved in making sure their students are receiving the instruction that they need in the way that they need it. So that is something that you tend to see. Now, advocacy could be something as simple as staying in contact with emails and saying, you know, how is this going? How can I help? And then maybe this isn't working. Can we try something else? It could be phone calls. Parents have gotten good with texts. And even if texts aren't allowed, there might be some other text system in the school district that allows them to communicate that method that way. Uh, yeah, it still could be handwritten notes that those are starting to go by the wayside. You don't see as much of that. And it could be just walking into that school office and saying, you know what, my student needs this, can you help me get this? I have found that advocacy definitely works better. If it is proactive, it's it's acting before anything happens. It doesn't mean that you don't have to be reactive. Sometimes you have no choice because you didn't know something was going on and you're going to have to react and advocate. But anything that you can do ahead of time seems to curb that, um, frustration that you get as an advocate. Now, another way that I've seen advocacy is there some school districts that I've been in that actually have identified their paraprofessionals that might be assigned to a student or classroom and have renamed them as advocates, a student advocate or students advocate to be able to make sure accommodations are in place. And the student's needs are being met.
Sara B.:Many children will be introduced to their first piece of access technology this coming school year. So how do you know what device is right for a child?
Leanne G.:Uh, well, this is kind of an interesting piece. There is a part in the individuals with disabilities education act that actually specifies what is assistive technology and assistive technology service, and it actually states any service. So we're going to think about the assistive technology service piece, any service that, uh, directly assists a student with a disability in the selection acquisition, or use of an assistive technology device. So whenever feasible, really the student is the selector of the assistive technology. Of course, they're doing it in conjunction with the members of the IEP team, uh, parents, uh, some specialists that have a good knowledge on what's available, but really working to include that student on those final decisions based on those evaluations is important. Yes, you want specialists. So it might not be a person that has typically been on that student's IEP team coming together to think about what needs are being met. So it could be an occupational therapist that comes up with something. It could be an actual assistive technology specialist where they have focused truly their career on assistive technology, but that is what should be happening. So if you're not sure if it's right, ask for evaluations, asked for that data, ask what trials were done, uh, think about what was actually available and, and, and thought about, and really assistive technology needs to address the need of the student. So what was the student not able to do? Not able to do well or needed to be able to do in a different way to be successful because that assistive technology needs to address that need. And there are usually many options and it could be that you just needed to try something different. Okay. In children,
Sara B.:They're children and they're growing like weeds. So how do you know when your child has outgrown their device or are there some signs?
Leanne G.:Well, again, we want the student to be able to do whatever it is they couldn't do. And that's why we put the assistive technology in place. What you can actually find is that if the student is performing this skill more easily and efficiently, that means the assistive technology is working. If you're starting to see this student not perform this skill easily and efficiently, and that's actually becoming a barrier, it could be that you need to look at the other, uh, devices or updated devices to help that student again, do what they were unable to do because of their disability. So those are some of the key pieces. Now, another key piece though, is watch the student, a student who is not using their assistive technology often it's because they were not involved in the assistive technology per, uh, idea, or they have aged to the point where they are more aware of differences often happening in middle school. And they do not want to look different
Sara B.:Earlier this year, we talked about if braille is still relevant and just so you know it is, but one thing instructors are noticing is that children aren't learning braille. They're just listening. How is not learning braille, impacting the learning experience and why does it continue to be a vital thing to learn?
Leanne G.:So when we talk about listening, instead of reading braille often, it's because the student has been given only that option. It's not because they didn't want braille, but the listening tool was the only option or the quickest option. And they were going to have to wait for their braille. So that's one of the things to think about is that what we provided. So they had access at the same time as their peers, but then we need to think about, is it the right access for them, or is it just something to get by until we get the braille in their hands, braille can take time to produce. And honestly, teachers sometimes had to think on the fly during this pandemic year and getting information to their students, lead time to get that information into braille. Uh, if we're lucky, we would love a week, two weeks, but often it ends up one or two days. And if you told me as a teacher that morning, you needed it in braille, it might not be the fastest thing I could produce. And so therefore I'm kind of stuck giving my student and auditory version of the whatever. So I'd say that some of the problem actually kind of comes on us as opposed to the student, why are they just listening? Because that's what you gave them. That's why they're just listening. So how does it impact? Well, most people who utilize sight as their way of learning information and reading are continually seeing words from their eyeballs over and over, whether that be the menu at the restaurant they went to, or the news article that they're reading on their phone, or even the words that are inside your car, you see print over and over and over again. You see how words are formed. You see where a parenthesis belongs or a period should be. All of those pieces are exposure. So if we're only resorting to listening, then all of that exposure is gone. It just doesn't exist. And yet we're asking people to produce words in writing form. They're not going to always give their answer by talking. They're going to be asked to produce writing. And there's a connection between we read and what we've write and how boards are formed and shaped how punctuation is done. And so all of those things are needed for success. Most of the time, when I talk to people who just don't understand why can't they just listen? I say, I can't imagine you just listening to something to gain that information. Nine times out of 10, if I'm telling you you're going to read a complex news article about the physics of going to space, you're going to want to read it in print, not just listen to it. And is
Sara B.:There anything else you'd like to add to this conversation?
Leanne G.:I think the best thing to say is we all are advocates for our children, whether they have a disability or not. It is something that as a parent is important that you are involved with your child's educational career and that they see your children see you as someone who's behind them to help figure out the issues with education. Doing so builds students who as they age become advocates for themselves. So they are able to self-advocate and which will apply when they get into the working world or getting college where really mom and dad shouldn't be stepping in. And that being said, it doesn't have to be mom and dad. There isn't everyone that has a mom and dad. It could be your big sister. That's your advocate, your aunt, your next door neighbor. It could actually be another teacher. Who's your advocate, a guidance counselor, a church member who is just the person who stands behind you and speaks for you. So if this happens to be a student listening, you find your own advocate. It does not have to be your parent. And that would probably the big thing I would.
Sara B.:Okay. Thank you so much, Leanne, for joining us today on Change Makers.
Leanne G.:It was great. Have a great afternoon.
Sara B.:And thank you so much for listening to this episode of change makers. We'll be sure to put in links and websites mentioned in this podcast, in the show notes, and as always be sure to look for ways you can be a change maker this week.