DISCLAIMER: Raw, unedited transcript from webinar. No guarantees are made for the accuracy of the content. >> Please stand by for realtime captions. -- >> Hello everyone I'd like to welcome you to this webinar called educational considerations for students with Usher syndrome . This is part one of a two-part webinar series where you will find both archives recorded together on the NCDB site. My name is Megan Cody and I am the lead for family engagement and early identification and referral at MCDB and I have with me today Carly Fredericks who is the Family Engagement Coordinator for the New Jersey deaf-blind project as well as president of Ava's voice and a board member. I also have with me Patti McGowan who is one of the Family Engagement Coordinator's for the Pennsylvania deaf-blind project as well as secretary for NFADB. And I have Nancy O'Donnell who is with the UHS trust Registry. In the first part of part one we will talk about an overview of Usher syndrome and a little bit about knowing about what that means for your child with Usher and first steps in creating an educational program. In the Part II portion of the second webinar, they will go into a deeper dive of talking about individualized education plans, accommodations and modifications. They will talk about specially designed instruction, who should be on your child educational team possibly, the importance of making smooth transition and adult services. Patti, taken away. >> Thank you, Megan. This is Patti McGowan speaking and we welcome you today . I am from Pennsylvania and a parent to a young adult son with Usher syndrome type 2. He is almost 22 years of age so we have successfully navigated the educational system and he is currently a junior at a university here in Pennsylvania. Today both Carly and I as parents along with our colleague and friend Nancy O'Donnell from the Usher syndrome coalition look forward to sharing our experiences and knowledge of raising our children with the etiology of's -- of Usher syndrome. And sharing with you the educational consideration as you navigate the educational system. We not only have to think of the now for our children with Usher syndrome , but we always have to prepare for the future. I will let Carly introduce herself. >> Thank you, Patti. My name is Carly Fredericks and my family resides here in the state of New Jersey. I have three children . My oldest daughter Ava is now 12 and has Usher syndrome type I be. We haven't navigated the educational system since the earliest years of intervention and she recently started middle school. I'm really happy to share my experiences today along with my colleagues and friends and I hope you find it is beneficial to make decisions for your children in the future. In preparation for this webinar, we learned there was a tremendous disparity state to state but we're hoping that this opportunity provides an ongoing dialogue for the Russian and to begin our webinar today we would like to welcome Nancy O'Donnell to provide history and knowledge about Usher syndrome. >> Thank you. This is Nancy O'Donnell speaking. As Megan said I work for the Usher Syndrome Coalition as the director of the registry and what I've learned in working with the coalition is that there is a lot of misinformation and spotty information, if you well, about Usher. We thought we would start this presentation with a brief history and a description so everyone is on the same page. In 1914 Charles Usher, a Scottish ophthalmologist, was the first one to study 69 individuals who had an eye condition called retinitis pigmentosa. He discovered that 19 of them also had hearing loss. It was Doctor Usher for whom Usher syndrome was named. In the ensuing 103 years, which is amazing that we've known about it for that long, what have we learned? Usher syndrome is a congenital bilateral sensorineural hearing loss. It is accompanied by a visual condition called retinitis pigmentosa, also known as RP. It presents itself first with night blindness and then a gradual loss of peripheral vision. These symptoms may become evident at different ages depending on the type of Usher syndrome that an individual has. In addition Usher syndrome includes vestibular or balance issues with some of the types and subtypes. Usher syndrome is the most common genetic cause of combined vision and hearing loss. It is carried on genetically. It is a recessive gene which means that both parents must carry the Usher gene and typically those jeans are carried by parents who have vision and hearing. Until those parents get together and have a child, they are unaware they are carriers. Usher syndrome affects males and females and there are three main types and 16 subtypes. Usher Type 1 is the first type and that is evidenced by profound hearing loss. A baby is born and in current days it would fail its hearing test before it leaves the hospital after being born. In early days deafness was not diagnosed until perhaps a child was two or three years old and may even have been misdiagnosed as someone with intellectual disabilities at that time, labeled mental retardation. In addition to the profound hearing loss, individuals with Usher type 1 have an early onset of retinitis pigmentosa , usually in the first decade of life. Yet the diagnosis may not occur at that time because as I've learned over the years children and adults with Usher syndrome are very resilient and resourceful and they accommodate in many ways for the progressive vision loss that occurs. In addition Usher type 1 is evidenced by a vestibular or balance issue which can affect early milestones in child development such as crawling, walking balance --, balance and coordination. Under Usher type 1 there are several subtypes meaning that these symptoms or signs are evidenced but caused by slightly different chains. There is no Usher 1A. There is Usher 1B, 1C, 1D, 1E, 1F, 1G, 1H, 1J, 1K . There are quite a few genes that contribute to Usher type 1. Usher type 2 is evidenced by moderate to severe hearing loss at birth and a child or adult might be considered hard of hearing. RP is evidenced later than in Usher type 1 , it comes more in the teen years and typically those with Usher type 2 do not have balance problems. There are three subtypes for Usher type 2 and those would be 2A, 2C, 2D . 2A Is the most common type. The rarest type of Usher syndrome is Type 3. That was just more recently discovered and probably more difficult to diagnose because the person is born cited and hearing. The hearing and vision loss occur progressively. In addition balance loss occurs in about 50% of individuals with Usher type 3. It is quite rare and interestingly it is found more commonly in individuals from Finland and those of Ashkenazi Jewish heritage. Currently there are two subtypes of Usher type 3 , 3A and 3B . Then of course because we have these three categories, there is always a few that just don't fit into the neat little diagnoses and that would be consider a typical -- considered atypical Usher syndrome. In that case a person would have to one of the aforementioned genes for Usher syndrome , but the symptoms just don't fully express themselves or the symptoms are absent. As an example, someone with Usher type 1 may have profound deafness but no vision issues. Or someone may have vision issues and no hearing loss. Those are the atypical examples. Rare, but they do exist. A colleague who is a researcher once explained to me that sometimes there are modifier genes that are further down the chromosome that influence or affect the expression of Usher syndrome. It's really quite interesting on a genetic level. The big question I'm always asked is how many people are there with Usher syndrome? The Usher Syndrome Coalition is an international organization but for today's presentation I just want to give you an idea of how many people might be in the United States. Researchers estimate that there are between 20,000 and 50,000 individuals with Usher syndrome. That is quite a wide range and we wish we had better numbers. That is one of the coalition's goals. If we look at how many children there are, birth to 21 that would be served through the educational system we extrapolate and do some percentages. The numbers for children birth to 21 is approximately between 7500 and 13,000. That also is quite a diverse range. What do we know about those children out there with Usher syndrome? Through the National Center on Deaf-Blindness or NCDB , there is an annual child count of children who are served by the state deaf-blind children's project which includes children of all ideologies and of course included are individuals with Usher syndrome. In 2016 NCDB's child count showed under 300 children with Usher syndrome from birth to 21 out of the nearly 10,000 children identified across the country as deaf-blind. 300 is quite a bit smaller than the estimated numbers between 7000 and 13,000. We have another source of information other than NCDB and that would be the Usher Syndrome Coalition registry . As of October 2017, the Usher Syndrome Coalition registry had 278 children with Usher syndrome birth to 21 who were registered in the United States. That number, interestingly, has grown in the past year and we are hoping that it's indicative of a better collaboration between the state deaf-blind children's project and the coalition. However, still abysmally low compared to what we estimate is out there. Where is everyone? Honestly after you see the definition of Usher syndrome and the vision issues, not everyone has been identified as having Usher syndrome. They may only have a diagnosis of deafness. There may be others that are identified but doing very well with a cochlear implant or hearing aid and maybe they even don't want to identify themselves as having Usher syndrome . Perhaps the parents haven't yet told the child that they have Usher syndrome or maybe they are just doing fine and don't see a need to register through either registry. That is one of the challenges is finding every one. Carly, please take it away. >> Thank you, Nancy. Those five words, your child has Usher syndrome , we all have our own story. We can remember exactly where we were, who was with us, maybe even what we were wearing. It's an indescribable moment that every parent experiences that may have just taken over every thought in their mind and even their body, every feeling. Little do we know that we would embark on this amazing journey with friends, colleagues, family and an entire community of resilient individuals living with Usher syndrome. No matter what age or time your child is diagnosed with Usher syndrome you want -- we want you to know we all know the feeling. We know it is not the most pleasant feeling but we want you to know more importantly that you're not alone. We are here today to share our experiences and pay it forward. Patti and I have our own journeys and our own stories and we're hoping that sharing those stories with you will shed some light on something that you are going to experience down the road with your family. To be honest I still have my grieving moment. They become farther and fewer in between which is definitely contrary to what I had thought. I thought as she got older and as Ava's vision changes I would maybe struggle and have more difficulty with that. But I haven't. In -- it has gotten easier and we have engaged with other families. We've engaged with the community as a whole and that has made this journey a little bit easier on us. We want you to know that the grieving is normal and the most important part of this journey is to continue to believe. >> This is Patti. Grieving and believing, the initial shock of the diagnosis of hearing those five words -- we often say it is usually a one-two punch, especially for parents and families. Typically we have learned of the deafness and or hard of hearing and we have wrapped our heads around that when all of a sudden we get the second punch, which is the diagnosis of the retinitis pigmentosa. There is that shock value that happens and as Carly has said you have to allow yourself some time to grieve and perhaps that grieving never will end up -- but then you have a choice as a parent to let you -- it overtake you or you overtake it. I always say the unknown is the worst especially with the retinitis pigmentosa diagnosis. Medically they really cannot say when that vision will go entirely. For me personally as a planner, if I only knew the day and the time it was going to happen I feel like I might be prepared. But that is just not going to happen. It is all about now unraveling the unknown and how do you do that? For me it was first and foremost to educate myself on the dual sensory loss. It is very easy to find information about deafness and hard of hearing, and it's very easy to find information on blindness and/or visual impairment. But to really find that information of where the dual sensory loss, the deaf-blindness, impacts took me a couple years in my journey. Luckily I did find at that time DB link but now we know it as the National Center on Deaf-Blindness that has a huge library of information. I was able to begin my self-study and I knew if I could educate myself then I would be able to educate others, both my medical team as well as my educational team. I began to embrace this journey. I knew that our children could do and what do amazing things. I also knew very early on that my son was capable of learning, I just knew he was going to learn at a very -- in a very different fashion. I began to fill my toolbox. >> This is Carly speaking. Filling your toolbox, you see a picture of typical tools. The tools we're talking about today are all the considerations that we're going to share with you. I found along the way in my journey that my knowledge was my power. And early on I felt as a young mother and new mother, since Ava was my first child, that it was going to be my power through this journey. I had to educate myself and find out all of the things that we may want to introduce Ava to along the way that are going to give her the resources to be successful. We found early on, I was a young parent so going to see professionals, they did not know as much information about Usher syndrome as I had hoped and I found myself going to any event or discussion, whether it pertained to hearing loss or vision loss, to see what I would be able to learn or take away from that experience that may help my child having Usher syndrome. It's a really important -- it is really important to know that although we hope that many of the professionals that we come in contact with will be able to provide us with that information, that may not always be the case and that's okay. By us sharing this information and letting you know about all of the things to consider for your child and family, these are things you will put into your toolbox so that you can make an informed decision as a family. There were times early on that I was fearful about introducing some of these new skills to Ava. It was almost like I was facing the reality as if it -- I introduced it to her now she would need it and require it. I found more and more that when we learned together, Ava and I both received more of an understanding about her reality and the opportunity to overcome some of these challenges as they arose. They were not as devastating as things had changed, we knew we had to go into our toolbox. We had to do things differently but we could still do it. That was helpful for both of us and to date Ava is confident pulling out some of these tools if and when she needs them. Without feeling she is different. >> This is Patti. What's first? This is individual and each and every one of us has to set our own list of what will work and a plan. We need a path. Again as both Carly and I mentioned previously, it's very important to educate yourself, not only for yourself and your family but I think what -- once you have that education it is easier to explain to others. It was very important for me personally to set a goal for myself. So my goal was to advocate for my son as he was young, as he got older I would advocate beside my son, and as a young adult I would advocate behind my son. Another very important factor was to begin to network with other families. Other families that had children and youth with deaf-blindness. To find families I could talk to that had children and youths with the ideology of Usher syndrome. -- I learned so much over the years from professionals but I have to honestly say I have learned from other families in this journey. One of the most gracious things I could share is I remember being young and I messed -- met my first adult friend with Usher syndrome and at that point I realized that even though my heart was broken, knowing my son with this etiology , with the proper support he would be just fine and that was being around adults with Usher syndrome who were happy and bright and living in the moment and I just thought we are going to be okay. It was very important early on to be connected to my deaf-blind project and again the National Center on Deaf-Blindness were so much information was available to me. Also the Usher Syndrome Coalition , Nancy O'Donnell, a friendship and working relationship has happened there and great information that I could pull to share whether it was with the medical or educational team. Again it was important to get involved in various parent groups whether they were local, state or national. Very early on also we heard about the Helen Keller National Center and it was important to get on that registry and have my child counted. But we have to remember with our children, even though they share the etiology , whether it is Usher syndrome Type 1, type 2 or 3. They are very unique and very individualized. >> This is Carly speaking. You are right, Patti. One size does not fit all. We have all learned, maybe have spoken to parents already or you are engaged on Facebook or have been in contact with the Usher coalition , but as Nancy and Patti have shared earlier, with the different characteristics of the etiology our children are progressing differently and there is no timeline as to when this will happen and what is going to change first. So we learned to grow with our children. There is not a perfect guidebook that we can provide you but by sharing some of these stories we hope that we will provide you additional ways to learn about the diagnosis of Usher syndrome. Much more important is to just consider all of the things we are sharing today, some of the things you may learn for professionals and family and then to start making some educated decisions as to what is going to work best for your family. I always humble myself when I need a new family that as much as they want to know what did we do to make Ava so independent, I say that I'm happy to share some of the decisions we've made, but that doesn't mean that's going to be the perfect fit for your family. I want to share some of those resources, however, you will choose what works best for you and following your child fleet is so very important. There are many times I had made decisions in the best interest of Ava and there are many times she said to me, I think this would help me better. Now that she is 12 years old, she definitely has her own voice which is something we advocated for so early on and she will tell me, mom, that's not working or I'm having difficulty with this. Or it is time to start -- stop PT because I'm never going to walk on the balance beam. We have those conversations because we are learning together and we are moving forward and continuing to advocate and now we are advocating together. As Betty mentioned earlier -- Patti mentioned earlier, in the younger years you will take the lead in advocating for your child. Where I am now we are advocating together and making some of those decisions and having those discussions. In the future I hope to be where Patti is an advocating behind Ava and cheering her on. >> Exploring modes of communication, this is probably one of the first crossroads that we come to. I know when my son was diagnosed with moderate to severe hearing loss, profound and the higher frequencies, I knew nothing so I thought I needed to go out and learn American sign language, ASL. Of course once he was aided and began to have speech, my son began spoken language. There is no right or wrong. Again I think Carly stated it's very important to follow our children's lead, but there are many opportunities out there so it's important for parents and families to explore all of the modes of communication. We have total communication, where we use many different types of communication. The auditory/oral spoken listening language, American sign language, known as ASL. There is tactile sign language that many of our consumers with deaf-blindness use where the sign language is in the palm of the hand. We also can print or print on the palm. Of course there is pen and paper. There are many options and usually our children will use one or more of these modes and that is just okay. Sometimes I think as parents and families you will feel some pressure, but I'm here to say to you you need to always go with your gut feeling and learn from your child. They will let you know their best mode of communication. >> This is Carly speaking. Thank you, Patti. To provide an example of utilizing several modes of communication, like Patti said, sometimes there is a little bit of pressure whether you are working with a particular school or agency. There expertise -- there expertise baby and one of these areas of communication, however, we found for Ava that all modes of communication were very beneficial for her at different times of the day. For example, during the school day Ava is an auto Terry -- auditory verbal learner but at night she experiences total night blindness. After all day of utilizing her cochlear implants and listening and trying to keep up and stay competitive with her ears, she is exhausted so she prefers to take her devices off and she doesn't have that vision. So there are times where she will be speaking herself and listening, and at night she uses tactile sign language. Ava is very English based so she uses a lot of signed English, not traditional ASL. But having the opportunity an additional modes of communication has been very resourceful for Ava whether she is out in the community with her Usher syndrome peers and culturally deaf friends. She is able to communicate and when she is back home in our neighborhood or local school, she utilizes her cochlear implants to communicate. It is just considering and following your child fleet as to what works best for them. As we move forward and look at the different ages through the educational system, I'm going to invite my family engagement specialist from NCDB to explain sign language. Megan? >> Part C, also known as the early intervention program actually serves children from basically birth to 3. The lead agency is designated by the state and families are supported by something called an individualized family service plan, or IFSP. In terms of family involvement is apparent you will be participating on all teams that are making decisions about the individual needs of your child. Typically these services occur in a natural environment to the maximum extent possible and the cost of the services, states may charge for services on a sliding scale but they must ensure that no one does not receive services because of an inability to pay. When your child moves on to Part B, this is considered the special education program. It is children ages 3 to 21. The lead agency as the Department of Education -- state Department of Education and kids are supported by individualized education plans, or IEP. Again, much like in Part C, in terms of family involvement, you as a family member will be participating on all the teams that make decisions about individualized supports for your children. The location for services will be the least restrictive environment. The team will look at where is the best placement that can meet the needs of this child and then determine that placement. The cost for services, all services must be provided for free through the Department of Education. >> Thank you, Megan. This is Carly speaking. We're going to dive into early intervention. Keep in mind as we shared earlier, sometimes this just starts off with a diagnosis of the hearing loss. Maybe your child was identified through the newborn hearing screening or maybe at the age of 1 you started saying they weren't producing sounds and you had kind of contacted a local pediatrician to see if this is appropriate or not and they may have been diagnosed with the hearing loss. This happens in many different ways, however, once a child is diagnosed with the hearing loss the first thing we are reaching out to is our Part C provider for early intervention. The early intervention really is an agency that's going to come out and see what is going to work to make sure your child is hitting those milestones that they should be hitting in their early years. The focus is to help your child stay on schedule for his or her speech, language and communication skills. Enhance your understanding about your child's hearing loss and special communication needs, support your child in a way where you feel confident in raising your child with hearing loss and keeping track of your child's progress so you can continue to make decisions for intervention. Up on the screen, how they base that is overlooking those milestones skills physically, cognitively, communication, social/emotional skills and self-help to -- skills. They are basing these milestones off" areas, however, they are diving into providing you the education and services to your child based on their communication. From the early intervention with -- the teacher of the deaf that was supporting a box was not only working on introducing language and skills to Ava but she was teaching me everything I needed to know about hearing loss and how to support Ava educationally and in the home with our family. A lot of the times I always said I feel like it was a therapy session for me because she was the first person that I was in contact with that truly understood what I was going through. She may not have had a child with hearing loss but she was working with many families and was able to make those connections for me. After working with the early intervention team, we had come up on Ava's third birthday. It was through the help of the early intervention provider that educated me on the next part of our transition, which is transitioning to preschool. We made a plan on how we were going to reach out to the school district, what information I was going to provide them about Ava's needs, and it was a difficult time. It was bittersweet. I was excited she was ready for preschool, but I was a little nervous to lead the providers -- leave the providers that had been with us. I was nervous that what I be able to advocate for her for the needs she has. The important thing to remember when talking about preschool age is you are reaching out to your local school district. When reaching out to your local school district they may have different preschool settings that you will want to observe and see if they are the most appropriate setting for your child to continue to provide the continuation of making progress with their language and listening skills. We also want to remember that we are always concerned about the vision and where that may be. We want to share as much information as we can with the team in making that decision about what is the most appropriate placement for preschool. One thing to keep in mind is that at the time of preschool the classification will be PSD, which means preschool disabled. They are not going to make the formal classification of hearing loss, vision loss or deaf-blindness but these should be the prime areas that we are focusing on in regard to placement. Also keep in mind if you start observing programs and you find a program that is most appropriate outside of the local still does -- school district this would be considered a most restrictive environment. It may be an appropriate setting but it's also considered most restrictive where a lot of the conversation is about the least restrictive environment and getting children to that point. We're going to talk a little bit more about school age. >> Thank you, this is Patti. Again, continuing under the law of IDA, -- idea, students have the right to attend school through their 21st year. Some states do offer 322 and I think there are a few states even up to 26. This would be a really good time to check in with your state deaf-blind project to find out the law in that particular state. You have an option here. You can take advantage of many things within this 6 to 21 years. Most of the time our children and youth with Usher syndrome are in the general education curriculum with some of these supports and considerations that we're going to discuss. And they are probably ready to graduate at the age of 18, but keep in mind as you navigate the system that they do have through that first year and that does not mean they would have to stay in that high school building, in fact it should be a transition into the community. Our son, Hunter, could have graduated at 18. He had all of his requirements, but with some of the items from his IEP he actually began community college still under the school district. In order for him to receive that other instructional thing he needed. We will go into this. Also we have the opportunity for extended school year. Again, when our students with Usher that are doing all the typical classes as their peers and staying in the curriculum, they also need those extra activities and instruction. Sometimes, keep in mind that during the summer it is an excellent time to have the instruction and additional orientation and mobility. All of these eligible opportunities should be topics of consideration to discuss with your educational team. Carly is going to talk about who might be on the team. >> This is Carly speaking. Who is on your team? It's important to include everyone that will bring value to the discussion to be at the table. Weather at that time you are working with your cochlear implant center and they have an educational consultant that you are dealing with at that time, it's important to bring them in on the conversation. There have been many times that a lot of our supports were outside of the state, however, that didn't restrict us from getting them included and getting their recommendation. Many times we had some of the providers and professionals that really understood Ava's needs just call in at the time of our meeting. It's important to have an additional family member or friend that you would entrust to be at your side during these meetings. It can be very overwhelming as a parent with all of the knowledge and understanding of what you've been through over the past several years. It is hard to squeeze that all in into 30 minutes or a two hour meeting. It is really important to have that emotional support as well and I always say it's good to have somebody there just to listen and maybe take notes for you because there are many times where I go into -- we go into the meeting with a certain expectation or things we want to remember but we get a little overwhelmed. Having that support their that that person knows exactly what we wanted to talk about. They can give you that edge. This can include many people and a lot of specialist. Whether it is the teacher of the deaf, TVI, paraprofessional that may be working with your child, audiologist, deaf-blind project if they had the capacity to attend the meeting. It's important to include all of these people in the conversations. One of the most challenging things with the diagnosis of Usher syndrome is that we are constantly tried to connect the dots. Medically we are saying audiologist, ENTs, ophthalmologist, RP specialists, genetic Doctor. Sometimes it is the same educationally. There are a lot of people that will be working with your children and it's always important to have everyone on the same page, especially in making decisions has a lot of the times at these meetings the decisions you will be making will be for the next year. It's important to have these open conversations. >> On the screen you are viewing the federal definition of deaf-blindness. As a parent that's a heavy word and I honestly have to say it probably took me about three years before I could say the word to describe my son. When we hear the word deaf-blind I think immediately we think of Helen Keller, someone that had absolutely no vision and no hearing. Typically persons with deaf-blindness have some residual hearing and/or vision. I would often find myself saying my son is deaf but he can hear a little bit or he can see a little bit during the day out of that left I, but he is blind at night. It was often very hard to describe. So I think it was when my son had finally stated, he didn't like the word handicap and he did not like the word disability. He just liked the word deaf-blind and I started to see a very proud young man with his identity. I think that it is very important to know this classification because it is the impact from this dual sensory loss and our children miss things often and they have the right to always hear and see equally as their peers, especially in the educational setting. It is with the proper supports that we need to make sure that they are also hearing and seeing everything that they have the right to do. We do this a lot by some formal assessments. These will be very valuable to your team. >> This is Carly speaking. Like Patti said how do we get to that classification? That does come through these assessments. This is why it's so important to have all of those key players at the table during that time of discussion because they may be making those recommendations of the type of assessments that are needed in order to make these decisions and placements. This evaluation process is typical for any parent that is reaching out to their local school district to receive services for their child. They use a variety of assessment tools and strategies to really gather information. To get a baseline of where your child is at both academically, developmentally and functionally. It's important to examine all of these areas of functioning and determine if this child, one, is in need of supports and services -- which we all know with a diagnosis of Usher syndrome would fall within those guidelines -- we will take those additional reports in order to get to the classification of deaf-blindness. There are many times that we find children throughout the state that may be in settings for children with multiple disabilities. They may have -- not fall because their hearing loss and vision loss was never diagnosed or maybe it wasn't a priority at the time of when they reached out to get their IEP and get those supports in place. So it's really important to consider all of these assessments and Patti is going to discuss a few specific assessments that are very helpful for children with Usher syndrome. >> Thanks, Carly. I think first off as we know with the syndrome, it is a slow, progressive disease. We know in the future vision and hearing most likely will take a change. But for the now, often I have found at least with my son, Hunter, there are changes that occur every day. It can be environmental, it can be how bright the sunlight is or if it is a gloomy, rainy day. Also we take into consideration fatigue. Visual fatigue, hearing fatigue. Our kids work really hard to listen and see, and sometimes that will take a toll. Some really important assessments that have helped us over the years, one is a functional vision assessment known as the FPA typically done hand-in-hand with the teacher of the visually impaired. It states how the vision functions. Also from the teacher of the visually impaired, the learning media assessment. How our kids learn the best. Which media? Is at a large print? Is it braille? Is it tactile? Is it all of these things are some of these things? Assistive technology is huge for our students with Usher syndrome. That can go on both sides, FM systems with the deaf and hard-of-hearing piece all the way to CCTV that will help with the vision wherever the student is located. As the child or youth gets older, ask them. They are the best ones to tell you in this classroom I see better sitting in the back of the classroom so I get the overview. In this certain classroom it is better for me to sit in the front row so I can visually stay on track with the teacher or instructor. All of these are very important and the assessment, if at all possible, if you have a person in your state whether it is from your State Deaf-Blind Project or a consultant who is specifically knowledgeable in deaf-blindness -- have them be a part of your assessment. Once these assessments are done, we begin to develop a strong IEP. >> This is Carly speaking. Like Patti stated, once these assessments are completed , then everyone comes back to the table. The eligibility is determined and we are ready to move forward with developing the IEP which is the individual educational -- individualized education plan. It's important to remember during this time, this specifically designed instruction plan is very customized to your child's needs. It's important that this IEP tells the story and designs a path for your child to be successful in their educational setting. I always tell parents there is never too much information that can go into the IEP. Whether it is in a specific criteria are not, all of the information that you can provide the case manager to develop this plan can always be added into parental concerns. Remember you are customizing all of the support and consideration that has been in place since early intervention. As you are growing and going through each of these stages to this point you want to make sure that it is customized specifically for your child. At this time, this concludes the part one of the educational consideration for students with Usher syndrome. We are going to dive deeper into that IEP plan . We want to thank all of you for joining us and we hope you can join us for part two. On the screen you will see all of our contact information so feel free to reach out to us at any time with questions or support or clarification on some of the things that we shared today. Again it was a pleasure we hope to see you in part two. [ Event Concluded ]