DISCLAIMER: Raw, unedited transcript from webinar. No guarantees are made for the accuracy of the content. Please stand by for realtime captions. >>We will get started in about two minutes, at the top of the hour. >> We have about one more minute and then we will get started on the webinar. Welcome. >> Hello, everyone. This is Robbin Bull with NCDB. I am showing it's the top of the hour. I think we will get started. I want to begin by welcoming everybody . I will go through some housekeeping items before hand just before I handed over to Megan who will be introducing tonight speakers. All the phone lines have been muted and this is to alleviate background noise. The question-and-answer session will be at the end of the presentation. However, you are welcome to write your questions in the chat box at any time during the presentation. It will be monitored throughout the webinar in preparation for the question-and-answer session. We do want to let you know this webinar will be recorded and archived for future viewing, so be mindful of your comments and the chat box and refrain from writing personal or sensitive information and I will be Poche does posting later in the webinar the link to where you can find that recording and the presentation material. So look for that. I will start the recording now and, Megan, when you hear the announcement, that will be your cue to start. >> Hello, everybody. I would like to welcome you again to the webinar tonight. My name is Megan Cote, and I am the initiative lead at the national Center on deaf blindness for the early identification and referral as well as family engagement. I am super excited to have these three ladies with me tonight and provide a webinar for you all about educational considerations for students with Usher syndrome. With me tonight is Ms. Patti McGowan, a family consultant with the Pennsylvania deaf blind project and she is also the secretary of NFADB, as she likes to tell everybody. The first and foremost she is a mother of a 21-year-old son with Usher syndrome. We also have with us Nancy O'Donnell . She is the former director of the trust registry for the Usher coalition and she is a special advisor to NFADB and then finally we have Carly Fredericks who is the family engagement coordinator for the New Jersey deaf blind project and she is also the founder of Ava's voice and a board member of NFADB and a proud mom of three children, ages 11, seven, and five. We are glad you guys joined us tonight. I know these women worked hard to put together a wonderful webinar to overlay for you all some things that will be helpful for you guys to consider with students with Usher syndrome in the school. Without further ado, welcome to the webinar, and take it over , ladies. >> Thank you, Megan. This is Patti McGowan speaking. We welcome all of you tonight . We have all looked forward to sharing information about Usher syndrome . Our personal stories of racing our children with the etiology of NCDB -- Usher syndrome and the impact within their education. Our webinar outcome slide is in view and we hope to share or gain knowledge with you tonight and the understanding of educational considerations. As parents, we not only need to think of what is happening now with our children, especially in the educational system, but we also need to help and think about preparing for the future. Especially with our children having the etiology of Usher syndrome. So , would you like to add, Carly We are so excited about this webinar and we have been working on it for several months now and in preparation we have learned about disparity between state to state that we hope this opportunity is an ongoing dialogue for discussion. With that said, Nancy will provide some history and knowledge about Usher syndrome. >> This is Nancy O'Donnell speaking. I want to make sure everybody is up to speed on the latest about Usher syndrome so we all go into the presentations about educational considerations on the same page. So it's interesting that we have known about Usher syndrome for more than 100 years. A doctor and ophthalmologist in Britain, Charles Usher, studied 69 individuals and it was he who came up with the diagnosis or the syndromes name and it is for him that the syndrome is named. >> In those 103 years what have we learned? Well, we know that Usher syndrome involves the congenital bilateral sensorineural hearing loss and the vision loss is due to retinitis pigment. Which as you know is a progressive vision loss first evidence by night blindness and then a progressive loss of visual fields until the fields are quite restricted leaving -- leading to legal blindness and sometimes complete loss of vision. And then vestibular issues are also common in several of the subtypes of Usher syndrome. So what are the subtypes? >> There are 3. We know that Usher syndrome is the most common genetic cause of combined vision and hearing loss. It is passed down genetically through families, and quite often, the surprising part is there is no one else in the family with Usher syndrome. So when the diagnosis comes along, there is often a bit of surprise first with the diagnosis of deafness and later on with retinitis pigmentosa or RP. Usher syndrome affects males and females equally. And out of the three subtypes, which I will quickly define, there are 14 subtypes. I can say that I have worked with individuals with Usher syndrome for quite some time , and to think there are 14 subtypes and more coming along as researchers do their thing is pretty amazing. So let's go into the various subtypes. Type I is evidenced by profound hearing loss. Before cochlear implants were common, those young ones would often be diagnosed and then probably sent to a school for the deaf and many of the adults with Usher one are signers with an -- American sign language as their native language. Number one has early-onset RP was in the first decade of life. >> This one also has vestibular problems in all of the individuals with type I. There are several subtypes from one -- 1 B to 1 K. >> Type II is evidenced by a moderate to severe hearing loss. Most of the kids when diagnosed are mainstreamed and they are in an inclusive setting and they are able to benefit from hearing aids and our oral as in using spoken language in oral, aural in using that and communication. In the teen years it's not quite as early as Usher type I and typically with Usher 2 there are no balance problems. And there are three subtypes, 2 A, 2 C, and 2 D and 2 A is the most common. The rarest form of Usher syndrome is typed 3 and that is a more recent discovery. That is a little bit more difficult to diagnose because the child is typically born cited and hearing and the hearing and vision loss are both progressive. So a child is probably not diagnosed at a young age and goes to their typical school and may be seen as clumsy or may just have difficulty hearing so the adults with whom I have spoken who have Usher 3, it was a puzzle to finally have a name for what they had experienced all of their growing up years. Progressive balanced loss is evidenced in about 50% of individuals with Usher typed 3. This is more commonly found in individuals of a finish -- a background from Finland or Ashkenazi Jews. Just a note that Ashkenazi Jews have a higher incidence of Ashkenazi Jews 1 F. You will see groups of individuals with similar heritage or from similar geographic areas having similar types of Usher syndrome and another common group are the Acadians in Louisiana and they have type I. Under typed 3 there are 3A and 3B but 3 A is the most common subtype of typed 3. >> Nancy, this is Megan. Somebody asked the question, why no 2 B. >> There is also no Usher 1 A. As the researchers are going through and they are taking blood samples and they are looking at the appearance of people and what they should be and then looking for the gene they sometimes have found that they have made a misdiagnosis and thought that this was a unique gene only to find that the person had a gene or the family or the small group that they originally categorized as 2 B or 1 A that they were actually in another category and that Jean did not exist, so rather than reuse it, like oh we will get rid of 1 K have a just eliminated it. It was a misdiagnosis and they just deleted that category. >> So than this slide is showing that topic that always gets us a typical Usher syndrome. Can nothing be clearly defined. There are individuals who don't fit any of those first three categories. In fact, the latest information that we have is about 20% of individuals with Usher syndrome have not been genetically identified. They don't fall under the currently known subtypes. Sometimes, due to modifier genes or other influences that we may not fully understand, the symptoms that should express in, for example, someone with Usher one they should have balance issues and pigment HRSA -- pigmentosa. They may not have the severe hearing loss. Someone with Usher 2 may have mild to moderate hearing loss but no vision loss. So the atypical families or expression of the Usher gene can be affected, as I have been told, by modifier genes further along . So the only definitive way to know if somebody has Usher syndrome is genetic testing. That is what I would recommend if you have a child or loved one or if you yourself are questioning. >> So how many people have Usher syndrome ? This must be the top question that we get from researchers in individuals who are newly diagnosed and as you can see, the numbers range widely. Lower and estimates are between 20,000 to 50,000 in the United States and just add worldwide, there are estimated to be 400,000 individuals with Usher syndrome. This is one of the reasons, as a side note, that the Usher coalition was established because we are trying to identify every person in the world with every type and subtype of Usher syndrome to finally see who is actually out there. If you think of the geographic and the ethnic considerations that I've mentioned before, there may be subtypes in remote areas that we have never seen or identified so it is exciting to think of finding everybody with Usher syndrome in learning the full scope of this unique syndrome and then as the research moves along, letting everyone know what is happening with the research. Just to go back for one second, how many kids are there with Usher syndrome? We estimate that birth to 21, using that 20,000 to 50,000 range, of total numbers of individuals with Usher syndrome in the United States, number of kids between birth and 21 could be between a little over 7002 as high as 25,000. And how many of those children are we aware of? >> This slide shows us that in 2015, the national Center on deaf blind which does it annual child count of children served to the state project is -- showed just under 300 kids with Usher syndrome birth to 21 can now there is some wiggle room there and there was actually a few more in 26 of 2015 by December 1, which is the day that the snapshot if you will is taken every year it was -- there were 300 kids so the previous slide shows more than 7000 to 25,000 which they have out there which is between birth and 21 years of age. So clearly our child count is way low and the next slide shows the number of Usher syndrome coalition registry and we call it the USA trust because if you give us your information you can trust it with us and we use it only for the betterment of the community internationally but the Usher coalition, when the slide was created, we had less than 200 kids. I am happy to say that in the last month or so we have had a great increase to the latest count is 280. So word must be getting out there to the parents and we are getting close to the number that NCDB has, which makes me hopeful. But it is still, both of these registries, are not reflecting what we think the number of kids with Usher syndrome to be. >> Where are those kids and who is taking care of them and who is identifying them? Many of them have not yet been identified with Usher syndrome. I have met so many families and adult who found out in their late teens, early 20s, late 20s, and with Usher typed 3 even in their 30s that they have Usher syndrome. So there are still very many clever ingenious kids out there who may have a hearing loss and are functioning with the early signs of retinitis pigmentosa, but nobody has put together those 2 and called it Usher syndrome Especially those with Usher 1 are now having cochlear implants are -- or hearing devices are hearing aids which allow them to be mainstreamed into a regular school or an inclusive setting. Again, without that awareness to look for the vision loss, they made just the identified as clumsy or space see or not social, etc. So they may not have been identified yet. And we all know of families that have learned that their child has Usher syndrome and they are not sure if they want to tell the child or how to tell the child and even beyond that, what would be the benefit of me telling their teachers. My child is fine and they only have mild symptoms and I don't really want to say anything at. So tonight's presentation will hopefully give you some ideas as to why it may be good to say something because Carly and Patty as I have learned over the years of knowing them have been tremendous advocates for their children, and I think you will be excited to hear why you might want to say something. >> This is Carly. Those five words, your child has Usher syndrome . I can say I can humble myself and I had that exact feeling that I have the day I found out my child had Usher syndrome. So we all have our own story and we can remember where we were and who was with us and what we were wearing and that indescribable moment that really took over our bodies. Little did we know, that we would embark on this amazing journey together with our child and our families and our community and this amazing reserve and community of individuals dealing with Usher syndrome. At the age and time of diagnosis we do know that feeling, it's not the most pleasant. But we hope that you have comfort in knowing you're not alone here today. To be honest, I still have my crazy moments and they come does become further and between as time goes by and contrary to what I thought, I thought it would be harder as she got older. The hardest part about this journey is really in the unknown. The most important part is to continue to believe. >> As parents, when we hear those five words, and Carly is absolutely right, we are heartbroken, with the news. But I am here to tell you that our children will and can do amazing things. There is the initial shock of the diagnosis of Usher syndrome . Many of us know it is at least a 12 punch and we typically find out about the deafness or hard of hearing and then we pretty much have gotten ourselves picked back up then we hear about the RP diagnosis. It is brutal because you are lost with that word of deaf blind and it's a very heavy and scary word. So the initial shock of the diagnosis, as parents, you have to allow yourself some breathing time. But you also have to start believing. As Carly said the unknown is the worst because you are dealing with a medical diagnosis, a disease of the retina, and medically, they really can't say when that onset may have been of the legal blindness or into blindness. Some of us know there may be additional, especially with my son with Usher syndrome type II, additional progressive hearing loss , but nobody can tell us and prepare us when that day will come. So in order to cope, we have to begin to unravel that unknown. And how do you do that? >> You have to begin to educate yourselves and how do you explain it to others if you have no idea about this diagnosis and the impact of the loss of visual and hearing. And as you begin to start educating yourselves and gaining knowledge, you will then began to as Carly said, embrace this journey. And we know our children are capable of learning and are just so bright with talent and personality and so we just have to figure out, because they're learning maybe a little bit different than yours or mine, and so you begin to fill your toolbox. >> This is Carly. Still your toolbox is a term I found useful for myself over the years. Knowledge is our power. A lot of times we find ourselves as a parent may be [Indiscernible] the room and many times they walk into meetings even with doctors and I have gone to the hospital and have walked past [Indiscernible] so it's very overwhelming as parents to find ourselves being the ones that have most of the updated information, but that is our power. When you are going into an educational setting and sitting around the table and as a team member you are bringing and expertise to the table. It is really hard for us to walk into that and wanting the experts to tell us what to do and that is not always the case. So when we talk about these considerations copies of your tools. The things we will be talking about today, we want you to consider, and when you decide to pull them out of your toolbox, that will be the time that you and your family choose is the appropriate time for you. >> So early on, there were moments, I have to say that I found myself a little bit overwhelmed and afraid introduce these new skills because it was like facing a reality. I felt like if I introduced it, all of the sudden tomorrow she would be using -- losing her vision and would need them. That is not the case. I found as I introduced these things, the more and more that we learned together it became a part of her and we weren't focusing on the negative part of it and she was overcoming these challenges more naturally and taking on these obstacles with the power herself. So not only was it my power, it was providing her the power. >> So what is first? So you have to have a starting point, and I remember one of the first people that I met in the field was a retired teacher of visually impaired students and she said to me, honey, you are still in shock and she said you will have a choice. You can either lie down and let this happen or you can get up and start to make a change. That was just enough direction that I felt, okay, I have to really start learning what this is all about and the understanding and I am sure I can share this personally and the other parents in the audience will understand when I say even to this day I am always surprised of what my son does CR doesn't say so what he does here or what he doesn't here. And so again, in the beginning it was just trying to understand both the vision and hearing loss. I would have even educators or other people say to me, well, what is worse? It is his hearing or vision? I can't answer that. It's the impact of both. So around this time we are starting to, and Carly will get into this about our goals for our kids and I felt oh I definitely have to set a goal for myself so my goal was to advocate for my son as he was young and as he got older, I would advocate and be beside him and now because my son is a young adult I am advocating behind him. It was great to start meeting other families like all of you on tonight's call have come to this. You'll meet amazing families that share this journey. I think one of the most important things that I ever did, very early on, I attended a forum with mostly adult and it was the first time I ever witnessed had teams of interpreters and it was the first time I ever saw sign language from the palm of the hand and I remember leaving thinking yes, my heart is still broken as a parent, but my son will be okay as long as I make sure that he has the proper support and just totally stick with my goals of advocating for him with him and behind him. He will talk about it more through this presentation about connecting to your state deaf blind project because as Carly mentioned at the top, this was us working and we saw so many differences just between Pennsylvania and my state in her state of New Jersey and we are neighboring states. Our national Center on deaf blindness we consider a great partner and is helping us tonight and there is lots of information. A library, notably to help yourself but to find information that you may want to share with team members with their educational team and folks in the community, just a wealth of information. As Nancy spoke, we have the Usher syndrome coalition and the USH trust which we have on listserv where families and persons with Usher syndrome can chitchat and of course all kinds of parent groups. Our national family Association for deaf blindness and our parent centers. Each state has a parent center where you can have some great information. So there are great resources local and not in your own state but on a national level. Of course Hellen Keller National Center and HK and say we encourage you to get your child on the registry because when they come into transition age and after we go out of the education system we still need our children or young adult children to be counted and remember the most important thing is even one -- with all of us on the call that may have children under Usher 1 or Usher 2 or 3, none of them are like. We are all very unique and very individualized. And so as Carly and I continue to share our stories about Patti McGowan and Hunter, you will see some things are like but mostly very different. >> This is Carly. On the screen you'll see a picture of two footballs -- fish both. One large and one small. And I always love to do this, especially when I am working with professionals who say I have had a child with hearing loss or had a child with a vision impairment and I know somebody who is deaf and blind. And unfortunately there is no one side that fits all in this space. Even as Patty had said even between our two children there is a big difference between the times that we introduce the skills to them in different accommodations that they had put into place for their IEPs. It happens at all different ages. We want you to learn tonight is number one, to learn. You are already doing that. You are reaching out and staying connected and it is amazing think of the fact that you find yourself here in this webinar it's a wonderful opportunity to not only connect with other families but to learn. Consider. You have already considered it. You are here in listening and you will be taking back information to your families and sharing it and you are considering it. Making educated decisions. We're all making them a reality and we are doing the best we can. And they -- no one sent us home and said exactly how to raise this baby. It's the same thing with the child with Usher syndrome. There are times when Eva and I will sit down and that it night and she will ask me a question and I say I don't know because I didn't think about that or she will think about things that didn't cross my mind. I actually love that . It continues to connect does and for her to know as having said I am doing this alongside of her and my goal is to be one day in that position because [Indiscernible-low volume] I do want her to be independent and successful and thriving in all of the things that she is dreaming of. The most important thing is to follow your child's lead. You become the expert together and you will know when it's time to talk about these things. A lot of the time we have been able to take the devices up at night when she was tired when she wants to have this in-depth conversations. I say, she always catches me off guard, but I sees of those moments because for me if she is open to listen and open to learn and comfortable, I want to be comfortable in her own skin. A lot of people might say to me she is so independent and she is beyond her years at the age of 11 and I say, you know, we have always shared things that were age-appropriate with her and we want her to be confident about who she is and we are not trying to fix her or change her but trying to offer her every opportunity that life has to offer. >> That leads us to advocating. How you do that is again learn and consider and make educated decisions and as a family together advocate for those wants and desires. I will transition here exploring some modes of communication. >> This is Patti. Our slide offers a few varieties like total communication, auditory or oral spoken language, American sign language, and ASL is the acronym and tactile sign language. These are all options. No right or wrong and as Carly said it's a very personal decision. It may be one of the first decisions that you began as parents because of course we typically know about the death hard of hearing these first with our children and I always laugh and tell the story when Hunter was given the diagnosis, now he has Usher syndrome type II. But he is modded to this moderate to severe hearing impaired and profound in a higher frequency so when I heard this for deafness I remember putting my three young children to bed and going off to Barnes and Nobles and spending from about nine until 11 or 12 and spending $300 on every ASL book there was. Actually, by the time he was fitted into his hearing aid, my son is a very oral spoken language child. It always makes me laugh because I think there are multiple ways that our children will communicate and we have to always be open so you have total communication, which offers various modes of communication such as signing or oral are auditory or written or visually, just depending on the particular need and the auditory oral approach, which typically teaches infants and young children to use hearing and speech to develop spoken language. We have the ASL, American sign language, which is the manual communication to communication as opposed to the spoken language. Tactile signing we mentioned before, where typically the sign language is a type of manual communication within the hand. Of course, we all know about writing in the palm, print on the Palm and we all use the pen and paper. So this is -- these are multiple ways and modes of communication and no choices wrong. I think as a parent to a parent, always go with your gut in the beginning but then began to follow your child's lead. You will see where your child is and at that point that is where the support comes in, and you support your child's decision. So Carly can share some examples of Eva . >> When you are exploring modes of communication, you are almost choosing a path. Are you choosing a path for your family or up path educationally. For us, we always just wanted to give her access to communicating. So early on Ava did learn various signs to communicate and her wants and needs and whether she wanted milk or when she wanted more but we were always thinking educationally that we wanted her to be with her hearing peers. For us it was important and we are talking about an educational setting, we wanted her to be an auditory and verbal learner. So when we had research about cochlear implants and they were putting kids until they were one year of age and they were doing it by E -- bilaterally. She continued to use signs that through the early intervention process we were absolutely focusing on her spoken language and her skills. As we grow older she continued down that path and we realized today that she is exhausted from listening all day and she is in sports and extracurricular activities and she is using assistive listening devices which enhances the sound so she is really tired so we were starting to realize that when she came home, those devices wanted to come off and we all know that when you are at the beach or you are in the shower, it's like the one time that they want to communicate with us and they want to go in in-depth stories so we really wanted to find a way to continue our communication and be able to communicate on her devices were also a lot of the times during the day Ava is an auditory oral communicator and however at night due to her limited vision and her night blindness and being auditorily petite we do tactile spelling. We do finger spelling in her hand and she is good in English so we do a lot of home signing or have signs that we [Indiscernible] speaking and we found that this really benefits her and makes her still feel a part of our home even though she does not want to wear her devices. So she does have a lot of opportunities to share that in the community and she does it publicly which is a beautiful thing that she wants to share her story and talk to other parents and talk to other children with Usher syndrome and talk to future educators. So sometimes we actually use touch signals. As she is speaking, even though she can hear everything going on in the room, due to her night blindness, a lot of times when you are on stage called the audiences blocked out so she can't really engage with the audience and see they may be nodding their heads are smiling or nodding to her and I want to know somebody is sleeping as I am presenting. I am able to tell for those things by doing touch singles on her arm. I tend to talk fast so sometimes I will draw on her arm to tell her to slow down. Again, there is not a perfect mode to this. These are things we introduce when she needs them. When she does not cash is communicating with her hearing peers. As we began to start thinking about the different ages for the educational system, I want to welcome back Megan Cote from NCDB to explain part C in part B. >> Thank you. I will spend a quick minute explaining to guys the distinction between part C in part B. Part C really stands for early intervention program and it serves kids from birth through generally the third birthday and depending upon the state it may go in past the third birthday but the lead agency that provides these services is usually designated by the state and the services are provided to children to kids experiencing developmental delays are conditions high likely that highly likely to result in a delay so Usher syndrome would fall into that category. When kids are in this age group , they have things called individualized family service plan or a IFSP. The family is intricately involved at both stages, part B and C to help create that IFSP plan. The services are typically provided in a natural environment to the maximum extent possible so that usually means in the home or if the child is going through some sort of childcare setting the support would be sub -- provided there and the costs vary upon state in some states may charge for services but they must ensure that nobody has not received services because of an inability to pay. If families need extra funding, that funding will be provided through part B. So the next slide talks about part B. >> This is where the kids begin to get served in the public schools and it starts at age 3 and runs through the age of 21 and the lead agency in this situation is the state department of education and specialized services must be provided to kids who said one or more of a large array of categories and one of which Usher syndrome falls underneath . At this age level, kids are supported by something called an individualized education plan or the acronym for that is IEP. And once again, the family should be intricately involved in creating that IEP plan for the child in the school setting. Ideally their services are provided in what is referred to as the least restricted environment. That would mean in a more inclusive setting with their age appropriate, typically developing, peers with support in that natural, least restricted environment. And in part B, all services must be provided for free through part B, that is, the state Department of Education, unless parents want to also get individualized private services outside of the school as an add-on to the services they are receiving within the school. >> Thank you, Megan. This is Carly. The first thing we will talk about is the early intervention stage which as she said it's birth to three years . So early intervention refers to the educational services for young children and it focuses on helping eligible babies and toddlers learn the basic and brand-new skills that typically developed during the first three years of life. So when we talk about that, as you can see in the slide, we are talking about the physical and cognitive and communication and social and emotional and self-help. This falls into the guidelines of a child with a hearing loss. In most cases with a diagnosis of Usher syndrome, for most of us tackling these hearing loss aspects first. If your kid is not diagnosed through genetic testing early on, you may not find out about the diagnosis until after the age of three or that early intervention stage. But if you do know that the diagnosis, it's really important to let your service providers know through early intervention in preparation for future or current services. And when we talk about early intervention, it is really important to focus on, not only the opportunity for the providers to come in and support your child, this is a crucial learning stage as parents, learning about what hearing losses. I can remember that we went through three teachers of the deaf before we found one appropriate for our past. They had come into the home and I would ask them about the cochlear implant and if they knew about that and if they did not have a really work the appropriate service provider for me because that was a path we were going down. So I went back to my case manager and said can you find me somebody else. I need somebody who is really going to support me as a parent and provide me the knowledge to support my child and carryover these when I am in the home with her receiving this [Indiscernible]. So it's about enhancing your understanding about your child's hearing loss and special communication needs. It's really to provide you that confidence in raising a child with a hearing loss. It provides you with an opportunity to really track the progress of your child and make future decisions for intervention in education preparing you for the transition from that to go back into the school district. It is important at this stage to ask questions and connect and get with the right service provider that will provide you all the resources to continue working with your child no matter what path you are choosing. >> I will transition us into preschool age. Typically this happens about four months prior to your child's third birthday. At that time you are going to want to reach out to your local school district and let them know your child is receiving early intervention services and really seeking an evaluation to continue services through the district. And the services, like she said, are [Indiscernible]. The hard thing about preschool is many times you are not aware of what programs are available for your child in your area with a hearing loss. So this is an opportunity with writing that letter and you are also seeking information about preschool that may be supportive for a child with a hearing loss and or Usher syndrome. If you don't -- do know about the diagnosis it is important to let the team know about that because it will play a major part in developing the individualized plan for your children -- child. The classification is something to remember. Typically, children are classified as preschool disabled, PSD. You will see that on your IEP when they are evaluated. So they are not addressing right away hearing or vision loss. You may see some of those things in the goals but they are not classifying them as deaf blind at this time. So we really want to remember that when we're talking about preschool, specific settings are considered a more restrictive environment and a lot of the times when you are planning for the least restrictive environment you may find is a family a more appropriate setting maybe the school for the deaf or auditory oral programs as she mentioned earlier. Total communication, depending on programs you think are most appropriate for your child after doing all the programs available. If you are going with that, that is considered the most restrictive setting and that is important to know. >> So for many of us, for myself and Eva, we did push for a placement for the preschool setting. And many of the local programs were not full day which is something we felt was important if she was going to be receiving direct services is --. The program that the district should a student provide appropriate language for her. She was going to be focusing on her listening skills and her spoken language. And we felt that we really needed a program that was focused on strengthening for auditory skills. At that time, we didn't know about her diagnosis so having Usher syndrome. It was actually during her preschool program after 30 days of her first day in preschool that the school had invited us in and to see how things are going and I started to have some concerns about her vision due to her night blindness and with the support of that program and the professionals working with her at that time they were very knowledgeable about hearing loss. They shared with me that there was a condition called Usher syndrome that was related to hearing loss as well and I have to be honest with you, like Patti talked about, that got wrenching moment. I had already tackled her hearing loss and I got her the appropriate setting and I thought she was in the most ideal place for her to develop a concrete foundation of skills and then I found out about the vision loss. For me it was a very traumatic thing and it was the second sucker punch. But it also validated a lot of the decisions that I made, putting her in that program and she would now rely on her hearing and so I was very content at that point with all of the previous decisions I had made because it was the unknown. So just consider all of these things and we are talking about preschool. If you are in settings in your general education setting, you want to make sure that a lot of those goals are really addressing the hearing and vision. They are really goal specific to your child, not a generalized goal. >> I will hand it over to Patti . >> This is Patti. It's interesting, son was born in 1995 , so he was a little bit too early for that newborn hearing screening that came about two years later to our state. And we actually did not know about his diagnosis for almost 5 years old. I think I know very little about the early intervention personally, birth through three years or even preschool because it wasn't until done, prior to them going into the school age, of 6 through 21 years when we knew about the diagnosis of the Usher syndrome. So, again, for school age children, from three through 21, and again we always want to say to check again with their deaf blind project for your state because they do know there are some states that they are young adults through 22 and I said he is Minnesota through 26. Now that is a rare state. But the students must both be eligible for and in need of special education in order to be entitled to the special education services that they need. And it is very important as we continue through the presentation but as we began to talk more about the consideration that they are the actual need of our children. I don't know, Carly, if you have anything else to say with Eva When we are talking about school age, I think the most important thing is to know that the schools are responsible to ensure that the hearing aids and the CIA's are worn and are functioning properly doing this during school be because these are things you want to address at the school age level. Specific technology must be provided if the student requires that and you want to consider talking about things such as extended school year and really focusing on what is the next year and what is it look like. A lot of times that IEP planning happens for one year and you want to consider all of these things. They often change from year to year. The diagnosis for Usher syndrome was focused on the hearing early on. It was a lot of the accommodations really focused around her hearing. Now that she has transitioned into middle school, I am seeing more and more that a lot of hers are focused on the vision piece. So just keep that in mind, that it will change as your child changes and that is not necessarily a bad thing. It's just that they are growing an older they become more independent and they become more able to use multiple means of technology. So keeping those things in mind is important and to know there is never a time that you have to wait to introduce these things. If you ever had concerns, reach out to your team and start talking about who those teams are and who is on your team. >> There are a lot of people that are on your team. So I used to joke around every time I would going to IEP meetings and say it's like a party in here because I had these meetings up for preschool students in Usher meetings and I was giggling but it is a beautiful thing because there are a lot of people that are involved in this and it is unique for us for children with Usher syndrome as we all know medically we are going to the audiologists and we're seeing ophthalmologists and we're going to ENT and they have an understanding of the stimulator and we're going to the genetic and there are so many people that are on our team and what we are trying to do is connect. So I think we're talking about the educational piece. On the slide you will see we are talking about the parents and in some cases the student and I have been really enjoyed bringing her on at the end of the meeting, the last 5 to 10 minutes I would say and in second grade I will never forget this she had come in at the end of her IEP meeting and we said how is school going and do you like it or have any concerns or is there anything you want to change? And she said, no, well, actually cut during fire drills to I have to stand by the cabinet? And her teacher seemed surprised and shocked. Is there something wrong she said? She said my cochlear implant sticks to the file cabinet every time we have a fire drill or lockdown and she was giggling. And her teacher was like why didn't you and that's why didn't you tell me that. She said I just put it back on but it was annoying. So as a second grader she showed those advocacy skills to say that I would really like this. So our students to play a big part in as they get older they will play a big part in their IEP. That is something to consider. I was like to bring along either a family member or friend to have a second set of years or an outside perspective to look in on the conversation. Sometimes we are very emotional as a parent and we're sitting across the table and we're provided maybe a half hour or 45 minutes if we are lucky to describe the next full year of our kids life and we are trying to squeeze in that amount of time we have everything that we know about our child that has happened over the past five or 10 or 15 years. And professionals change and teachers change and we are still there sitting at the table continually telling that story and it's an important story for them to know in order to make appropriate decisions. So it's an emotional support or a second set of ears is very important. Quickly also we have the special education director and in some cases it will be the case manager and not necessarily the director of the program and a general education teachers in special education teacher may pop in. The teacher of the visually impaired or the teacher of the deaf with the educational interpreter or the intervener or the audiologist or a few consultants and as she said earlier this a be a perfect time to connect with their deaf blind project to get some of those resources prior to these meetings or if they are allowed to join you. A speech pathology does pathologist or all of the direct service providers. The most important thing to remember is that everyone does bring a unique perspective to the table and it is not only doctors, but a collaboration. This provides not only your family support but the team members was support because they are not the experts in everything. A lot of the times I would find that the teachers would rely heavily on the teacher of the deaf and in cases of things about her vision, which was not her scope of expertise. However, they would go to her because they would see her most often. But the teacher of the deaf needs to feel supported as well so she knew even if the teacher of the visually impaired wasn't always available she had access to her and she understood what the goal was and she understood she could reach out to her so that was really important so knowing who is on your team and fostering that collaboration in working together, again, will make everything a little bit easier, not only on you in making decisions but on your child. So it's been in the know, I always say. It's something that I really value and foster when I am working with professionals and families with children of Usher syndrome. >> Once you do come to agreement as a team, will happen is there is definitely no room for dispute. We definitely want you to know that classification is an area that is a strong topic that we encourage you to advocate for and I will transition this to Patti to talk a little bit about that. >> This is Patti. On the screen is the federal definition of deaf blindness. I think again it is a have the word and it takes us as parents sometimes to digest that word but also to understand it. Again, often, at least with me, I felt immediately of Helen Keller, no vision and no hearing. We know most of our students with deaf blindness and even with Usher syndrome have some usable vision and or usable hearing. And it's so different in each one of our own children. So understanding that it is the combination of the law, we often say deaf blindness can be defined as a disability of access, meaning access to visual and auditory information about people and things in their environment. I often say with my son, some of his educators, he does not know what he misses. If he does not hear something, he doesn't know he hasn't heard it. If he hasn't seen something, he doesn't know that. That is not there. he has every right as his peers and siblings and as the rest of us. Again, I think it's important to stress that support will allow for him to access the same information that we do. Also, the supports will allow him his independence. Oftentimes we will hear from special educators were educators on a whole that say we don't want the student to become to and dependent on a person, but I have to say is a parent I would like to break that myth because my son will always need to be supported and it's because of his support that he has had all this time. I am proud to say, he is a second semester junior at a university in our state. He is doing very well and looking to move on to get his masters. He has a plan. So a lot of this stems from having very good assessments as we were getting ready to develop the IEP, but the assessment, which will be most valuable. So Carly I will let you start. >> On the slide you will see the overall definition of why an assessment is place. The evaluation itself cut a variety of assessments tools and strategy to gather information. To overall health vision and hearing and social and emotional and general intelligence and academic and communicative status and motor abilities. When we are talking about assessments, this provides a real baseline to where our children are academically. It also then really provides an overview and a scope of where they are and where do they fall into the guideline of needing support. I always encourage all of the families that a work with and this is something that I did early on, I was an over sure. A lot of times people say you don't have to give me all that information. But all of this information really needs to be considered, like medical assessments and maybe she had this for her vision and that was really providing is the baseline of where her vision was at that time. So as things change, they were able to really gauge how that was going to affect her academically. Like Patti said, our children are in the educational system because of the support. They are staying competitive with their peers academically and it's a very interesting thing. I know that even the deaf blind professional that agrees, that children with Usher syndrome are extremely [Indiscernible] and without the support it doesn't allow them the opportunity to say there's to be competitive with their peers. There are some additional affect that I will ask Patti to talk about that really should be considered and concluded that included when your child is having an assessment. >> This is Patti. I think also to remember, of course, with the etiology of Usher syndrome, as we said previously, even though it is a slow progress of disease, RP or the hearing, there will be changes. So it is very important, even if somebody may say, well, you don't need that right now. In my opinion, as a veteran mother, I would say it is important. And the assessments need to be happening. Some assessments that they may not think you need right now might not be a bad idea to do as a baseline. We talk about the functional visual assessment and this is basically to see how are the kids use the vision they have or another great one is a learning media assessment. Again, this is typically conducted by a TVI and it is to determine what kind of literacy and functional learning materials are appropriate . This is extremely important in their education learning and their systems. Another assessment would be assistive technology. We all know Technology is just moving right along. All of these assessments and thoughts are going to continue to build that toolkit that we talked about early in the presentation and also with this information, you are going to begin to really develop a strong IEP, and this is also information that will be shared with all of those team members that Carly just spoke about. >> This is Carly. When we are developing the IEP, as you see it really tells the story and designs a path for a student to achieve their educational outcomes. Now called what I find interesting in the IEP and what I said before, is a lot of our children with Usher syndrome are extremely bright. This is very unfamiliar territory for our case managers. A lot of times they are doing modifications to the curriculum. They are not sure how to incorporate these goals in order to provide access for our kids. So they are relying heavily on teachers of the deaf and visually impaired who write in those goals for instructional learning and we are talking about accessibility. So when we're sitting around the table and talking about these goals, like I said, if there is no modification to the curriculum and I will go into that -- Patti will go into that further . We want to extract the accommodations for our child with Usher syndrome. It is a lot of work for a child to remain competitive with their peers and to find themselves in high on a roll classes. In order to get to that level they have to supersede where their peers are actually working. So these are things that we want to address and focus on and these additional assessments to identify what technologies may be appropriate for them with assistive listening devices that are appropriate and we really want that really laid out in the IEP. So Patti will talk a little bit about the accommodation versus modifications and what they are like. >> You will hear these words. This is Patti. This is as far as accommodations versus modifications. At this is here on the screen. I think it's easier to say, again, we need to make it a fair playing ground for our children. As Carly said competitive in doing the same. The best way to explain accommodations versus modifications is that for example, and we will go into many of the designed instruction, but what the accommodations, and my son Hunter, he is going to go into his history class with his peers, and he is going to receive the exact same test that they are going to have. But he has accommodations that are in his IEP such as extended time to take this test. Maybe he needs to go into a room privately. Maybe he needs the teacher to orally read to him the question or perhaps he needs to orally get the answers. The difference there would be in a modification where you would take that history test and you would take maybe five of those same 20 questions, and out of those 5 you make it to answers as a multiple-choice. So that would be the difference were that test would be modified. And that would be considered a modification versus where our kids typically are just moving with the accommodation. >> On the next slide, I want to take a few minutes and as I said my son is now in college and so we are out of the education system. And what I did for this presentation is went back to his actual last IEP as he was getting ready to be a senior in the building of his high school and the next few slides you will see all of the accommodations and specially designed instruction that went into his IEP and not every day and not every minute was a using everyone of these accommodations and he knew when he needed them in each one had a -- if I look at one of the bullet. Has high school had a very strict dress code. One of the dress codes was no one was allowed to wear a bulkhead, no boys. Of course, we had learned over the years that it's much easier to go to the teacher at the beginning of the year and say how do you teach because we will adjust to that versus walking into a teacher's classroom and saying okay, you have an all -- now have a student with Usher syndrome in this is how you have to teach. There may have been times where in order to accommodate the way the teacher taught that he may have been up against a window when the sun was coming in and he needed to wear his balk at in the school building in that class. Other specially designed instruction shows that he could have a note taker at times and he needed some larger print. Many of his books were digital textbooks. >> His high contrast marker was needed for the whiteboard and we also made sure that he actually had access to true -- to personal FM transmitters during his classes, one that the instructor war and the other so he could interact with his peers and students. It's very important for directions to be repeated. I often say for my son it was very important to do what I referred to as pre-teaching and letting him know what to expect if he was going into a history class and what they would talk about that day and at some point he had an opportunity, whether it was with his intervenor or one of his core sensory teachers such as a teacher of the visually impaired or deaf hard of hearing to reteach and to make sure if he hadn't heard something in that class that it could be repeated. So, again, all of the specially designed instructions and bullets you are seeing were always in his IEP and again, he knew when he needed them and they were there for him and absolutely helped his success. The related services that gives you an idea of again hunters IEP of all the related services that he was entitled to.'s speech and language therapy and he did have an intervenor with him every day and he had his hearing support and audiological support and assistive technology support in orientation mobility and division and OT. It was also important to make sure that the general education team was also supported as well as my son. We would have in-service around deaf blindness and we would bring in our deaf blind project from our state and assistive technology and consultation in academic collaborative meetings and I think this is probably one of the most important things that I ever learned and we did is had meetings outside of our IEP meeting. Actually our team would meet quarterly and we would come to the table with an agenda and sometimes it was to talk about assistive technology and sometimes it was to talk about transitions, but we met quarterly outside of her IEP meeting. Continue to see support for school personnel. >> Again it was important that it was a team of interventions so that all of the school personnel were working together. We did not have a teacher of the deaf blind, and besides our state deaf blind project coming in, it was important that the expertise of my teacher of the visually impaired worked with my teacher of the definite was important that my teacher of the deaf when outside and did the orientation mobility so it was true teamwork. >> This is Carly. With all of that said, we talk about support for school personnel and for the team, it's all about the collaboration. And just as our kids don't know what they are not hearing or don't know what they are not seen, it's the same with the professionals. You don't know what you don't know. As parents coming to the table with this knowledge and this expertise and what the can shins to the individuals that do have the expertise such as the deaf blind project, it allows that opportunity to break down those barriers. For me, my biggest complement would be at the end of the year, when a teacher would come back and say to me thank you for sharing the knowledge and willing to work with them and learning something new. The reality is for a lot of these professionals in the school districts, they may not see another child with Usher syndrome again. In most cases our children are the first and only they will see during their time in that school district. So when they said that and we broke down those walls, you made me feel comfortable enough to learn to make mistakes and we are all learning this together. We all know that they are making mistakes and we learn from those mistakes and those of the important things. As Patti said that important time to communicate outside of the IEP but also break down those barriers so people feel free to share and tell things that may be going on in having those pathways of communication open really help us overcome those challenges. Again cut challenges are going to arise just as when you thought we had everything in place and I will never forget we transition to our normal -- new school district it was the least think I was worried about was the yellow tape on the stairs, but it's the first time that she was entering a building that had stairways and there were four of them. In our old school district we were in a smaller school, a quarter the size and it was a small building. It was actually the one thing I wasn't worried about. They were happy to get the case and they reached out but all of a sudden it is the first day of school and there I am with my camera in front of the building and all I cared about was taking a picture in getting off the bus and the principle is running up to me in a panic that says the tape isn't on the stairs. And I [Indiscernible] and said there was a thumbs up and said hold on. We giggled and they were so nervous about it but it is okay. The point is you are ready and aware and you want to make this happen. By the next day, it was being delivered that day and they had everything in place. So be open-minded. I think a lot of the time we find ourselves really overwhelmed. We are learning and they are learning. We want to make this a perfect environment for all of our children, but when they come back and they are out in the community, we can't make everything perfect and they learn from those moments of be open-minded. >> One of the things that I want to go back to this and apologize is setting the tone for those trainings as Patti said earlier. Having those opportunities to really learn together and one of the things we had done was did the training for the full staff. We found out it was really informative so no matter if they were going to have Eva as their general education teacher or if they were a teacher that maybe ran school sports or maybe pastor in the hallway, they knew her story and a new. Condition and they had a certain expectation as well. So not only that collaboration and if your team is willing to do so with the support of your deaf blind project with the support of the professionals working together, I encourage you to do team trainings and reflect that of your team. >> So quickly we will go over some direct service providers. First and foremost, another one person that was important to me through early interventions in preschool and now he is a transition in the middle school which is not the easiest was my teacher of the deaf. For the teacher of the deaf in our case comes in two or three times a week to work with Eva as she mentioned earlier and she worked on some pre-teaching skills and she made sure the equipment is appropriately working and she was teaching the teachers how to use that equipment. And that is really again understanding the complexity of language in its development and have the deep understanding of hearing loss so they are really able to bring that out in communication and make sure our children, that they'll have access to the auditory and spoken language. >> Next we have the TVI This is Patty. We hear about the TVI player on the team. Probably hunters most key player in tandem with his death hard of hearing along with his speech and his orientation and mobility therapist so the teacher of the visually impaired is very important and also they will work with the student and the professional educators to make sure that whatever the mode of event or the way the student will need to receive the information coming into the classroom that the TVI is working and in tandem also with the student, especially as they get older. Another important key player would be a occupational therapist. For us, with Hunter, it was a little bit when he was younger. I always say that the OT was very good in the early days with the fine motor skills, which we never knew if Hunter would learn braille or to help with strengthening those little fingers and not becoming tactile defensive and lots of fun games to play. Also, as he got older, second grade and I can't even remember that far back, but instrumental with his writing. The best way for him, but only to learn print, and I hate to say the word Christmas because I don't even know if they do that and I am starting to show my age but all of those fine motor skills. You will quickly talk about the PT. >> PT, especially early on, the first thing for us for her was she was very slow to sit and not able to mobilize her body and her head would always be to the left or be to the right and we always thought her head was too big and she had those cute little blind this blonde head and she was a little bobble head and we started realizing that maybe it's because of the hearing loss and a lot of the times the providers would come in and they would work with her and strengthen those core skills and she was a late Walker and she didn't walk independently until she was about three years old, right before starting preschool. So really focusing on her balance was a major concern for us. All of these supports are in place early on. So I will ask Nancy if she is still on the line to come back and talk a little bit about vestibular function and how it affects people with Usher syndrome. >> As I mentioned with Usher 1 and 3, vestibular issues are present, so parents and teachers may see it will affect the walking and balance and it would affect mobility and sometimes children and adults are assumed to be drinking or have other issues, maybe some type of motor issues but it's all based on the vestibular issues so parents have told me that that was one of the diagnostic criteria that they noticed and their child that caused them to look further into whether or not the child had Usher syndrome Thank you. This is Carly. So as Eva progressed in age and when she got to the elementary level she was very adamant with us and again in her skills of said mama I won't be able to walk on a balance beam and I don't want to do PT and I want to do regular Jim and I don't want to be pulled out. We really followed her lead with that. And so we decided to do outside of school to do some activities that provided some core strengthening skills such as horseback riding and karate. We found a fun way to incorporate that to really still work with PT but not delay the educational setting. >> Another direct service is speech and it is to promote that communicative and linguistic as well as optimize outcomes for deaf and hard of hearing children. Important thing to realize about speech is early on, as it is not going inappropriately, it won't come out appropriately. So working with the speech and language pathologist is really important and for the child with hearing loss. If a child is attending a program that is for the deaf and hard of hearing and it may already be integrated into the curriculum are planned as a fallout part of the day and this would be considered a direct service. The most important thing is the teachers must establish communication and linguistic goals for the purpose of the child reaching their developmental milestones. Early years it's really important to focus on this and we find a lot of times that school districts will say that they are age-appropriate in their language and they will qualify for speech services. However, focusing on the fact that our children are hearing, whether they are hearing to cochlear implant or they are hearing during amplification device, they are hearing differently and it's really important to continue [Indiscernible] to know there is no age limit on speech and that is another thing we hear about that they will say that they have aged out of speech and that is not necessarily true. That is a minute. They won't aged out of speech. But there may come a time where they no longer need the service. For a child his primary mode of communication is ASL, Nancy will talk a little bit more about educational interpreters. >> I am mindful of the time. I want to ask our moderator that it is now 9:30 PM. I want to be respectful of the participants time. >> This is Megan speaking. We will finish up this last slide and we will go to the three questions in the chat pod and make sure we get those answered. >> Quickly, we wanted to impress upon everyone that an educational interpreter is not a teacher's aide. It is not an intervener. It's a specially trained interpreter who is actually quite different from an interpreter that one may find working with adults in a community setting. And educational interpreter is part of the team and they are under federal obligation to educate the students and they are part of the related service provider category and you can learn more about it on the next slide. Actually, the Department of Education created a website called classroom interpreting.org where you can learn more about their role in the requirements and I do know though that sometimes it is difficult to find a classroom interpreter knows either signed English or American sign language and that would be a process that the parent would definitely want to be involved in terms of selecting and interviewing. >> Okay. Some of the questions that came about in the chat pod were does the stipulate issues affect those with Usher 2? >> This is Nancy. Individuals with Usher 2 typically do not experience the stipulate issues. They are the one category in which it is not. >> The next question is from Catherine was did your children learn braille and if so was it prior to losing their site? >> This is Patti. I would answer that very early, again, all about the toolboxes. I pretty much said that I thought it would be a good idea for Hunter to be taught braille and to be honest I had a professional say wait until you need it. I will tell you, his primary is still large print, about a 28 font. That he knows real 1 and 2. It's interesting because I will watch them. Say if we are in a restaurant, he always reads the braille to make sure he is going into the men's restroom and he will look at a menu in braille sometimes if it's too dark you may have it in a restaurant. Again, for my son, with Usher syndrome 2, he was taught braille and he knows it but it is still not his primary but it's definitely a great backup for him to have an when there are times that he is so visually fatigued, again, he brings that tool and he has it. It is good to learn that during the education because once you leave the educational system, having the opportunity to have that instruction becomes somewhat limited. Great question. >> This is Carly. That is a great question and to add to that Eva is currently in sixth grade and she started learning braille when she was 5 and we had introduced it because when she had returned to district cash he was returning to a half-day program so we thought felt -- that incorporating braille at that time would help and pulled her out of school. Like Patti said, she is an avid reader and she definitely prefers to use print and she is using a larger font know, about a 12 is easier for her so small and books, we try to find them in large print or she uses an iPad in order to change the contrast and to magnify the font but yes she does learn braille and will continue to. >> One more question. Is there technology that you feel is the most important? >> This is Patti. Again, if I can first take a stab. I think this is a great conversation for your educational team to talk about assisted technology assessment. Because we will find out that sometimes we can't really go in there and say my child needs an iPad. It does not work that way. [Laughter] but to definitely talk to the team, either request and assistive technology evaluation and we also know that sometimes with the valuations that is a beginning and endpoint. I think that if the team can agree that and assistive technology assessment would be great, I think that would be the beginning. I always said with my son, it was the assistive technology and the intervenors that kept him right on grade level competing with his peers. So that would be my suggestion. >> Another question that came about that says is it known how many or what percentage of individuals have cochlear implants? >> This is Nancy. I don't know of any percentages or statistics on the number of kids with cochlear implants. These types of questions would be great for us to work, the coalition, to work with researchers as we do have our database. And those of the types of questions at the coalition would enjoy working on to find out because we don't know that much about the Usher community in general. So we can't answer the question not -- now but open to researchers in finding that answer. >> So I would like to think you for all of your knowledge and they have so much information to share with you all that if you want to reach out to Carly or Patti or Nancy or even myself , I will move forward the slides a bit. This is so you guys can have everyone's contact information. Robbin is also painted in the chat pod . While we are doing that, there are a few quick polling questions that will put up on the screen for you all about the webinar. The first question says how relevant was the content of this webinar and the second question is how useful where the strategies and ideas presented in this webinar. And the third one is please rate the quality of this webinar. And then the last one is the webinar was presented in a way that was interesting and easily understood. So if you can answer each of those questions. I am sorry to leave you out if you are on the phone. But if you would like to cut if you can see the screen, and are able to about, if you can your information in the chat pod if you would about your thoughts on the webinar if you can't see the screen. >> And while the polling questions are coming in, again, I want to give a big thank you to Patti McGowan and Nancy O'Donnell and Carly for all of the knowledge they shared and I know that they are more than happy to answer questions that you guys have about your children and about the registry and all of that stuff as time goes on and as kids grow you may have more questions. So feel free to reach out to them and they are here to help and happy to support you with your needs. >> This is Robbin. I did post the link for the presentation and recording will be posted tomorrow. So if people want to review any of those materials or there were a few other side so that people can view, if you scroll up on the chat pod a little bit you will find that link. >> Thanks again, everybody, for coming and we look forward to having you join future webinars. Have a lovely evening. Goodbye. >> [Event concluded]