DISCLAIMER: Raw, unedited transcript from webinar. No guarantees are made for the accuracy of the content. >> >> Hello, everyone. My name is Megan Cody and I would like to welcome you to part two of a two-part webinar series called educational consideration for students with Usher syndrome. I am the initiative lead at the National Center on the line is for early education and referral as well as family engagement. With me today are Carly Frederick who is the Family Engagement Coordinator for the New Jersey deaf-blind project, president of Ava's Voice and board member of the national family association for deaf-blind . Patti McGowan is the Family Engagement Coordinator for the Pennsylvania deaf-blind project and secretary for the national family association for deaf-blind. And Nancy O'Donnell who is the director of the USH Trust Registry as well as the special advisor for the national family association for deaf-blindness. If you missed the part one webinar, I highly recommend you start with that webinar. In part one this group of talented presenters provided an overview of Usher syndrome , talked about some of the implications for Usher syndrome and the important for step -- first step in creating an educational plan. And Part II they will talk about the IEP process, potential needed accommodation for modifications and will review a detailed example of specially designed instruction and discuss the educational team, transition and adult services. So sit back and be ready to learn some -- from these remarkable women. >> Thank you, Megan. This is Patti McGowan and we welcome everyone today. Up on the screen you are seeing a slide, a definition of accommodations versus modifications. We think of support and we often know with our children and youth and young adults with deaf-blindness that they are always going to be -- there are always going to be adaptations, accommodations or modifications. I think the best way to explain accommodations versus modifications during the educational setting would be to share some personal experiences from my son Hunter. For example, during his high school years, he took a typical track of education looking into postsecondary transition. In order to make that a fair playground for him, like his peers, he would take the exact same test as his peers but he would have the accommodation. Perhaps he could go into a room alone with the teacher one on one to take the test or to have some extended time to take the test. But it was the exact same test that his classmates were taking. And example of modification would be that test but perhaps if there were 20 questions, a modification would be maybe only 10 questions for this student. Most of the time I think it is safe to say that our children and use during school -- youth during school will take advantage of the accommodation. The next slide, what I have done is there will be a series of four slides. I have taken my son -- sons last IEP that was prepared for him as he entered as a senior in high school, to share with you on the screen today. These are examples of specially designed instruction that went into his IEP. As you look over these, please remember that this was over the course of his lifetime as a student with Usher syndrome , not each and every one he used every day. With the exception of the intervener which we will get into. He certainly have these in his toolbox out of his toolbox -- had these and he knew where and when he needed the specially designed instruction. This was to support him so that he would be a successful student. Again, his preferred seating, I think I mentioned earlier. Sometimes it was great for him to sit in the front of the classroom, sometimes it was better for him to sit in the back of the classroom. We learned very early, as an example, not to ever go into a classroom and tell the teacher how we thought they should teach, but we would ask the teacher how they taught and with that information Hunter and his team could decide were the most appropriate place would be for him to learn and to see and hear. Continuation of all of the various examples that were in Hunter's IEP of specially designed instruction. It was very important when I look at this to share with you the repeated direction for Hunter often when he worked with his intervener to have a little bit of pre-teaching so that he would know what was coming that day or in that particular class. Also the repetition to repeat, I think pre-teaching and reteaching are key for all of our students. We know that they might have missed information either prior or afterwards. Again, more accommodations that Hunter may not have used every day but they were there . He and his educational team would decide when and where and what to use. Related services were also built into my son's IEP and this gives you an example of all the related services. Again this was taken from his final IEP in his senior year of high school. This gives you, at least in Pennsylvania, how they rounded off the sessions and how many minutes. You see the speech, Hunter had an intervener with him every day. His hearing support, audiological services, assistive technology support, orientation and mobility lessons, vision support and occupational therapy. All of these -- support for general personnel and general education was very important. In service to the classroom teachers, especially specifically about deaf-blindness. Also about the assistive technology that my son was using, and to go over the accommodations so that everyone understood why there was the need and when there was a need. We relied greatly on the consultation from the intervener. I always say the intervener was the eyes and ears of my son. So it was important that the general educators heard from the intervener. One of the most important things, and I would suggest to any family, especially with a student with deaf-blindness, is to have collaborative, academic meetings outside of your IEP. We met as a group quarterly and different topics but we would come to the table with an agenda. Sometimes it would be maybe just specifically about assistive technology. Other times it was about transition. There were times that FM systems and service training need to be offered. -- Needed to be offered. There were other trainings for school personnel. This is staff who would perhaps need support around the dual sensory loss. The TVI, teacher of the deaf and hard of hearing, intervener, audiologist and AT consultant. It was important we all learned together. >> This is Carly speaking. In learning together it would be considered collaboration and collaboration in developing and IEP, and carrying out the daily objectives and continuing to grow with that child as they are meeting their goals -- collaboration is so important. At this point I really try to humble myself and remember to -- the scavenger hunt I went on to find information on Usher syndrome when Ava was diagnosed. I know we've come a long way between the Usher Syndrome Coalition and the National Center on Deaf-Blindness having all of this information readily available via the Internet, but that wasn't always the case early on. We really had to find out and share and gather information from all of these providers that were coming into our home during early intervention or someone I may have crossed paths with that it had even heard of Usher syndrome to connect me to these -- this information and resources. I try to remember when I'm sitting at the table and developing these instruction plans, that everyone around me isn't an expert in Usher syndrome and they are learning as well. For most of us in our school district this is the first time that our school district may have had a child with Usher syndrome. I tried to assure them I'm here to work with them. I don't expect them to be an expert and that I am still learning and we are learning together. I do have a certain level of expectation that they are willing to learn and they are willing to communicate so that Ava can thrive within the educational system and continue to be competitive with her peers. As Patti said earlier, a lot of our children we may find in these general education settings with the accommodations in place to support them to be successful. We have just recently transitioned to a new school district and one of the things and thinking about collaboration, we took that opportunity to request that there be in training for the entire school staff, that way whether they were a buzz direct classroom speaker or -- a buzz direct classroom speaker or just crossing paths with her in the hallway that they felt informed and they felt knowledgeable. Some showed interest in working in the field after participating in this training and I always feel it provided a sense of community for children. It is so important to remember you don't know what you don't know. It is not that these individuals working with us don't want to provide the services, it is just no they don't know what services they are supposed to be providing. It's important as a parent and as a full participant in these meetings to break down those barriers. Communicate, overcome these challenges as a team and just be open-minded. We are all in this together and it's important to take advantage of those experts at the table to support you through this process as well. For me one of the direct service providers, the teacher of the deaf, was instrumental in supporting us through our transition. Many times you will find whether you are in your local school district or in a district setting that the teacher of the deaf may be provided as a direct service provider that comes into the school district or some school districts have their own if it is needed. They may work with your child from preschool to college age. They work in a variety of environments. One of the nice things now that Ava has transition to middle school, in the beginning of the school year she was seeing the teacher the deaf twice a week but she found that being pulled out of class was quite difficult for her to maintain and keep up with all of the work that was expected of her because she in -- is in high honors classes. We decided as a team it would be more appropriate for the teacher of the deaf to be there on more of a consultative basis and to consult throughout the month and more appropriate times -- at more appropriate times to help her with her every day management of her responsibilities. Sometimes this may very and I suggest sometimes it's great to have more and decide later to take away. For us, again, the Teacher of the Deaf is instrumental because she understands the complexity of language and its development. She is there as a support for not only Ava but all the profession -- professionals working with Ava to make sure they have an understanding of how the FM system works and to be able to determine is there a red flag? That she missed information? A lot of times we find a particular grade, if it is below par were Ava is particularly at we know it may be just a bad day or her vision or hearing. As Patti shared earlier, the team has a big impact on our children. Another instrumental player on your team may be the TVI. >> The teacher of the visually impaired was very instrumental on my son Hunter's team and I just want to go back and reflect as parents and family members develop this educational team, you are going to have a core team or what I refer to as my sensory team around my son which of course are these key players. Is Carly mentioned, the teacher of the deaf and now the teacher of the visually impaired, we're going to go through a not -- some others. Unfortunately there are not too many deaf-blind teachers and/or specialists. It is so important that these key players bring their expertise not only to the table but begin to work with one another. Our teacher of the visually impaired or TVI really brought in the importance of the learning media in which my son worked. We began with braille and it was extremely instrumental to the team. Another very important key player would be the occupational therapist. Again, especially knowing in the future that the vision and progressive disease of RP, the OT was able to begin early to develop those fine motor skills. So that was very helpful to begin to strengthen the fingers for my son and to expand on his sense of touch. The OT was instrumental with his writing because, of course, with the vision it wasn't always very accurate in the beginning. So all of these things together, the OT working with the TVI and working with the deaf and hard-of-hearing really was instrumental and very foundational in the beginning. Next we would go into the gross motor skills. >> This is Carly speaking. When we talk about physical therapy, they use a variety of treatments to help build strength and improve movement and strengthen skills needed for daily activities. For us just to take you back to remember, we didn't learn of Ava's diagnosis until she was three years old in a preschool setting. So early on she was being seen for early intervention from the teacher of the deaf, we started to notice some other characteristics of things that she wasn't hitting her milestones of crawling or sitting up independently and being able to hold her head up. At that time it was actually the teacher of the deaf that recommended we do a PT evaluation. It was determined that she was eligible and she was behind where she should be at that time of age. Later on during the preschool time when we still have that PT support, to get her walking independently and getting her navigating through the preschool on her own without being -- having her handheld, as we strengthened those skills kind of putting all those pieces to the puzzle together we learned she had the diagnosis of Usher syndrome. The PT was the first sign for us that was -- there were additional things going on with Ava. With children with Usher syndrome , the type of PT that is going to be offered may be different depending on their type and subtype. So we just want to keep in mind that the PT is an important key player on the team and they should know as well just as much information about the child's diagnosis to ensure that when they are forming some of the skills and working with our children that they have the understanding of hearing and vision loss and maximizing the hearing and vision when they are working with them. I always say to be in eyeshot and earshot of our children because with physical therapy there is a lot of mobility going on, a lot of movement. We want to make sure our kids are oozing out on that instruction and are taking in everything both visually and auditorily. >> Another important direct service provider that you may be working with will be the speech therapist. The purpose of speech is that communicative and linguistic as well as optimizing outcomes for children who are deaf and hard-of-hearing. A lot of the times we would always say the teacher of the deaf which show -- so instrumental making sure it was going in properly so the speech therapist is making sure it is coming out properly. It was important for them to work together and have a true understanding about the cochlear implant or the hearing aid or whatever mode of communication your child is using when working with them with speech. It's going to go back to those assessments that are being done early on. Speech assessment is very important and to have the person doing that speech assessment to have the knowledge and understanding of, one, hearing loss and the diagnosis of Usher syndrome. If your child's primary mode of communication is ASL, Nancy is going to talk about educational interpreters. >> This is Nancy speaking. I just wanted to throw in a little bit about an educational interpreter which is quite different from the interpreters that you might have seen on TV taking care of reporting on hurricanes etc. And educational interpreter is actually part of the educational team. They are specially trained. They are not an aid, teacher's aide, intervener, not a random person who may know a few signs. They are specially trained as an interpreter and they are also considered a related service provider. And educational interpreter has a legal responsibility to support the child's education and access to the general curriculum. You may find in the adult world that the interpreter is not part of a team. They are there as a communication facilitator between two consumers who are trying to communicate with different languages, but if you have an educational interpreter they stay with your child throughout the day and it's important to know their roles -- role. If you would like more information about educational interpreters and their certification, the next slide has information about that although there is a register -- Registry of Interpreters for the deaf right now the certification can be given through Boys Town . There is also a great website for parents to go to and find more information about this as well as a separate website for educational interpreters. >> This is Patti. Intervenors, we are hearing a lot about them and the intervener that worked with my son through high school was so instrumental. And intervener typically is a parent educator who has been -- para-educator who has been trained in knowledge around deaf-blindness. They provide access to education and communication. We think of deaf-blindness as a disability of access of information. The intervener acts as the eyes and ears of a child or use -- youth with deaf-blindness. I think it's important to remember that intervenors should be as individualized as the child or use IEP. Know what the student needs are. I think it's also great to know -- or I witnessed as my son went through high school that he was able to tell his intervener his needs. I as a parent often would remind the intervener that my son did not know what he did not hear or miss. So that was always kind of my two cents in as a kind reminder. Think it's very important because our kids have the right to access the exact same information as their peers. The next slide shows you my son and his intervener. That is Hunter working on his magnified computer and scanner. It's important again to know that and intervener works with the student, not for the student. >> This is Carly. Now we will talk about O&M which stands for orientation and mobility. This is very different than the PT. O&M will work on skills for your child to travel safely, independently and confidently as they are transitioning through different environments. Sometimes this may look like a direct service provider that may be working with the child weekly if they are working on a specific skill, however, sometimes it may be consultative Lee and maybe coming and when they are needed there. For us when we moved to a new house it was really important for me to get in contact with our O&M because Ava wasn't used to our new environment. Whether we were seeking out the neighborhood or route she would be going to school or if she had friends in the area that she wanted to get to their house independently, the O&M came in and worked with her. We introduced Kane training skills when Ava was about eight years old because she started to realize that having three children it was becoming difficult to travel with all three of them. At that team -- time Ava was eight and I had an infant and six-year-old. I was trying to juggle everyone together and I didn't want Ava to start feeling scared so at the time we felt there was a need there. So we reached out to her O&M and she came in and introduced the cane. Again as we're talking about whether you are transitioning or navigating a new environment, the O&M can be instrumental in appropriately using one of the tools in our toolbox. >> This is Patti . They're on the screen is Hunter and his guide dog, Atlas. They have been a team now for three years. He is getting ready to enter community college for a class. I think it's important to touch with the orientational mobility, we often think about learning the cane and finding the orientation of our environment but it really goes so much beyond. As Carly had spoken about going to a new school for Ava, new school district, there is that orientation of not only the school building but what about the football field? Our kids want to cheer on their high school football team or maybe watch a baseball game. Our son swam on the varsity swim team for four years. It was very important that he got the lay of the land of how to go down the steps to the locker room and where the showers were and back out the other entrance to get to the pool deck. There are lots of different types of mobility that we need to introduce our children and youth to and again, for example, when I talked earlier in part one that we took advantage of our son being under the school district through the age of 21. That allowed us at times that his O&M instructor would teach him public transit and how to not only find the bus schedules on his iPad but then go to the bus stop and learn how to go to the Dep oh and transfer buses and get his ticket -- depot and transfer buses and get his ticket. We have trolleys and buses so it was very important for him to learn all of this while he had the entitlement under the school district. It helps with the independence. There is Carly's three. >> Thank you. To the right of the screen you will see a picture of Ava, Mason and Miley. That is the year we introduced the cane to Ava and the important thing was we were so fearful at the time, again facing the reality that she needed the cane. I didn't know how I was going to handle it. I didn't know how her siblings would handle it but once we introduced it and Ava's personality definitely shine through at that time. She started breakdancing with it and that has come in handy today with many weddings we've been in over the last year. She is confident. She is able to be herself and not rely on anyone else to do the things she wants to do that she would otherwise do with her vision. In the picture they are all holding their canes. We had them make a cane for Miley and it was a real fine moment for us as a family to see that no matter what is going on with their children that there are people that look up to them and for Mason and Miley, Ava is everything. They want to be just like her. There are times when my kids want to pull out their pretend canes and make Ava feel as comfortable as possible and sometimes they are just being her guide naturally. So just really encouraging that independence and considering the options we have so our kids can continue to travel safely and independently. >> Extracurricular activities, when we talk about that, especially as you will see on the screen that falls under the Rehab Act which provides our children with Usher syndrome the arch -- opportunity to continue to participate in these afterschool activities. Again you may find some challenges because a lot of the times the coaches or teachers or whoever is in charge may not understand the Usher syndrome or our children's accessibility needs. But this is again where collaboration comes in and the use of the Teacher of the Deaf and the teacher of the visually impaired and O&M to come in and say let's assess the situation and see what supports are needed so that our children can be successful and participate with their peers. This year that was a fun moment for us. It was the first time in our district that they had a child with Usher syndrome and it was the first time they had a child with any special needs participating in a general setting as far as sports goes. They had asked a lot of great questions and they took advantage of the Teacher of the Deaf and the teacher of the visually impaired to see that they were doing everything to make sure Ava had the information accessible to her when she was out on the soccer field. And indeed she tried out and made the team and she had a successful season and it was very exciting for her to feel a part of that and a part of the community that we live in. >> It's important -- you see on the screen there Ava and Hunter doing activities. They are part -- very proud of that. It's important to keep your eye on the prize. I understand sometimes there are moments when the school district has said to me the district doctor may not approve her to participate in sports. They are -- there may be challenges but all it took was an open conversation to say, she does it does have the capability and maybe some additional assessments need to happen but she should be afforded the opportunity to try out. She may not make the team, but if she does she should be able to play and stay competitive with her peers. Everyone that was involved in that was instrumental in making that happen from the physical education teacher that just accepts the application to asking questions to having the conversation with the district doctor in getting them in contact with our doctors. So keep your eye on the prize and sometimes it's very emotional to hear someone say no, but that doesn't mean the answer is no. They just don't know what they don't know so share that information. Patti, do you want to share what Hunter is doing on the screen? >> Yes, this is Patti. I just reiterate everything Carly has said. I think keep in mind that if there are activities going on within the school, that would still be under your IEP social support should happen. Also we want them to have fun and fun filled lives, so sometimes I think his parents we have more fear than they do so let them go. Here is a picture of Hunter kayaking and of course he has on his safety jacket and so does Atlas. They are having a good time. There are no limitations. >> So not already. I feel like all of the things we discussed during part one and part two seem like a lot. So what happens? We get our kids set up, we get the supports in place, customize their IEP, get engaged with their general education teacher, get engaged with the paraprofessional, whoever is on the team. We form those relationships and then June rolls around again. Here in the state of New Jersey that is the end of the school year and that is always a time I start thinking about in the end of April and May and beginning of May that we have to start preparing for the next year. Some people may think that's early but as we all know the end of the school year is busy and there are multiple children in the classroom and I always call a meeting towards the end of the year two, one, thank all the people that successfully supported Ava throughout the school year but I also want to get information from them and suggestions as to what would be the best fit for next year? Who would be the most appropriate teachers with the team continue to be the same it's really important to have that conversation towards the end of the school year. While it is fresh in everybody's mind, I always ask teachers to share some information or do a little report out that may be helpful for next year's teacher. Try to remember what it was like when Ava came to the classroom and you may have been a little bit nervous. What were the things you found work best for her? I always feel it's important to share a student profile in gearing up for the next year. I'm always telling our new Thai members -- team members welcome to the team and I hope you enjoy the summer to get rested and ready for the next school year. I like to introduce them to the key players that will be remaining with Ava so they can begin forming a relationship. It really goes a long way. I feel our team has been so strong because every new member whether they were there for one year or on the team for 10 years feels just as valued. That was so important to me because I truly appreciate every single person whether they are on the team or behind the scenes implementing some of these supports. But I want to thank them. It's a lot of work and there are a lot of children that they are supporting and I want them to know that it is not going unnoticed. How do we gear up and get ready? For me I have had the opportunity as the New Jersey deaf-blind Family Engagement Coordinator to perform some of these trainings and presentations for our staff. So that's always a humbling experience being both a professional and a parent. Either way whether I was in the role are not I like to provide a little bit of an overview about who Ava is. This is really Ava in a nutshell. In this -- on the screen I like to be playful and we designed the A's of Ava. She is an avid reader, loves competition, she's in at least and artist -- athlete and artist. She believes deep down anything is possible. We don't want them to just know the Ava with Usher syndrome and all of those specialized instructions in the IEP plan. I think it really comes first circle them knowing Ava, who she is as a person because utilizing some of those supports and knowing who she is, I always giggle. I had a meeting with her teacher in her honors class and she said I can read her face and feel her out and I know when I can ask and when I should back off. It's nice to know -- for them to know who she is as an individual. As she gets older, there are things that our children will develop on their own. >> Yes, this is Patti. As Hunter began to get older and transition year to year and of course when you get into middle school and high school, you have different teachers all day long and different classrooms. It was very important for him to prepare and present a PowerPoint. He did this to his educational team and Pierce. First for the educational team, a little bit about him. He would talk about Usher syndrome , the various assistive technology equipment that he used through the day and why and what he needed. Probably freshman year I would say a couple weeks into that first nine week period, he came to the educational team and said I need to tweak this and do this for my classmates. They are all kind of staring at me when I role in with my large CCTV and various equipment. So we said, okay, we will help you where you need the help. He tweaked it and every classroom allowed him to present this 10 minute PowerPoint to his classmates. Not only did it help explain to them, I think he felt better about it and actually some friendships came from that. I don't think peers were quite as afraid to come up to him and asked because he showed the openness and probably the most important thing about this was this really was the beginning of my sons self advocacy and his own self determination. That takes us to the next slide of identity. I think that word and all the things that come under that. Self-determination, self-awareness, self advocacy skills. This is so important. It is important for our youth and young adults with deaf-blindness. It's important for them to own their identity. It is very important and I have learned this is apparent not to let my sons identity become mine. As you go along you will see these incredible, amazing things that your children do and you will want to puff up a little bit and think, maybe take some credit. That credit goes to your child. They are -- their self-determination, they are learning to take charge of their life, they need to make the choices. Sometimes they are not going to make the best choices but hopefully it will become a teaching moment. It is very true that students who have this self determination will begin a stronger transition planning. As we start to talk about secondary transition planning, at least in the state of Pennsylvania, we start at 14. The federal law says ex team. Some states start at -- 16. Some states start at 15. You have begun to transition from early intervention to preschool to school-age. Use everyone as a reversal. Keep notes and no because the secondary transition planning is huge. And begin as early as possible. This will come into the plan. You will have a statement within your IEP about transition. You are going to be talking about perhaps the secondary education and training and that would be either higher education or vocational schooling. There is employment and the goal of independent living and/or community participation. I have to be honest, I am just in my first year of this journey of the adult system. I need to be learning from other webinars and it's scary. From all that entitlement that we have discussed in the first webinar series and now to this one, that entitlement goes away and now it becomes eligibility. It is a whole new system and if we have given our children and use all of these supports and slowly but surely turned it over to them where they have become self advocates, they have there identity, they are going to be much better and in charge of their own life. >> This is Nancy speaking. I would like to go over a little bit of options in adult services. I want to emphasize what Patti said as being the important difference between services for children up to 21 and then after 21 eligibility means you must meet criteria for qualifying for services. Many children register with their local commissions for the blind and receive services. Those services can continue as they get older but with Usher syndrome and the progression -- progressive nature the vision may be very good through the educational years and they would just need to be aware they should register with the commission for the blind when legal blindness does come through. That will allow them to qualify for certain services and supports in their communities such as orientation, mobility and other services. If a job, employment or goal of the child and they are choosing not to go to college or college is not an option, if they left the educational system and would like some vocational training, one should check into their local department of vocational rehabilitation or DVR. Those services have eligibility requirements as well as a desire for someone to have employment when they leave the program. >> Next we have the Helen Keller National Center for deaf-blind youths and adult. I worked at the center for many years and I can tell you we worked with many youth and adults with Usher syndrome . The center operates several regional offices around the country so that there are opportunities for individuals in their home states to meet a regional representative to find out what services might be available locally. But if an individual realizes at some later age they need a comprehensive training program, there is a training center in New York where individuals can go and stay. The Helen Keller center also has a national registry for all ages and all types of individuals who are deaf-blind in provides rational training both online and in person. Support Service Provider's are a great service that is just starting to become a little bit more available nationally. They are also known as SSP's. Sometimes they are volunteers and sometimes they are paid but basically what and SSP does is provide support, visual information, environmental information, to an individual who is deaf-blind so that they can do their regular activities of daily life whether it be assisting at the bank or going shopping for a dress for an event or bill paying, etc. They are not interpreters although many Support Service Provider's do have sign language skills and you can look for those. There is an effort right now to get support server -- service providers nationally. That has not yet happened but you can find out through your local Helen Keller representative what services might be available to you or your adult child. And then of course if an individual is going to college, there are two colleges specifically oriented for students who are deaf. That would be Gallaudet in Washington DC and the national technical Institute for the deaf in Rochester, New York. In addition, the California State University at Northridge is a good resource as well. And I'm not mentioning these to limit your child's opportunities, because actually any college should be available depending on their interest and all colleges have a department of support services. They go by different names and support services students need. >> This is Robbin . It looks like you are getting close to the end but I want to be respectful of the captioners time. I want to do a quick check to see how much time you still need and see if the captioner is able to stay on for that amount of time. [Time needed verified.] >> This is Carly speaking. The thing to remember and something that is always close to my heart with Ava is that it is the climb of this journey. Things are not always going to be the same like Patti said in part one sometimes the unknown is a little scary. As Helen Keller, someone we all truly value and look up to said, alone we can do so little and together we can do so much. On the next couple of slides there will be a bunch of links and resources. These are the links to the Usher Syndrome Coalition who has a variety of ways to connect whether it's with medical professionals, administration, families and individuals with Usher syndrome and is always they have there wonderful conference that you can engage in person with families and the community. Here are the links and resources to the National Center on Deaf-Blindness. So -- we thank them so much for having -- hosting this two-part webinar series and allowing us this opportunity. There are many resources specific to Usher syndrome there as well. I always encourage my families here in the state of New Jersey to create a login and filter through that wonderful library they have and all of the wonderful resources and training opportunities. And again this is another way to engage within the community. The national family association for deaf-blind, known as NFADB. That is something I'm very fond of and an active member of. It's a great way to connect and look for additional opportunities. And the Helen Keller National Center for deaf-blind youths and adults has a wonderful registry and additional supports as Nancy mentioned earlier especially when talking about transitioning and adult services. I highly encourage all of our families to take a peek at their website as well. Again here are our contacts and we want to thank you for joining us. I know I can speak on behalf of everyone involved in the development of this two-part webinar that we are so humbled to have this opportunity to share our experiences. We are firm believers of sharing information so that every family has the opportunity and information and resources to make informed decisions for their children. Something I will leave you with an something our family is very fond of is the saying that life does not have to be perfect to be wonderful. I hope you enjoyed and thank you for staying tuned with us. We hope to hear from you soon. [ Event Concluded ]