DISCLAIMER: Raw, unedited transcript from webinar. No guarantees are made for the accuracy of the content.

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>> WE HAVE JUST A FEW MORE MINUTES before we get started with the webinar.
>> I'm showing that it's the top of the hour. I have bells outside my our-- bells outside. This is Robbin Bull  with NCDB and we are helping with  the technology for those of you who have been on the phone with us for a while have heard. I'm going to go through a few housekeeping items. I just want to mention those of you who have been on the phone with us that we are trying to alleviate the background noise by having the phone lines muted. If you know that your phone line-- they should be muted but if you know that you've come off of meat and you can put it back on that would be great those should be muted as you come into the meeting. That should be taken care of. The question-and-answer session will occur at the end of the presentation. However, you can write your questions in the chat box at any time as it will be monitored throughout the webinar in preparation for that session. This will be recorded and archived for future viewing. Be mindful of your comments and refrain from writing personal or sensitive information as that will also be archived. When you hear the announcement Pam, that will be your cue to start.
>> Happy Wednesday. Look into the webinar entitled lessons learned, parent panel. We are thrilled to have you with us tonight. It's an honor for me to be able to introduce the following 4 women who have graciously agreed to share their perspective on experiences with CHARGE syndrome.  They are Minnie Lambert from South Carolina , who is also a board member of the foundation and the chairperson of the foundation family engagement committee. Next is Kim Lane from North Carolina followed by  Erika Watts  also from South Carolina and last but like-- last but not least, Danette Roth  from Missouri. Rather than spending time introducing them to you I will have them-- have you learn about their experiences first 10. We could not be more thrilled that each of them said. As a reminder and is Robbin just said,  the webinar will be recorded. Be careful about what you put in your chat box because it will be seen by everybody. As Robbin reminds us all , refrain from writing personal or sensitive information. The CHARGE syndrome organization is a not-for-profit organization providing support for individuals  for charge syndrome. It is a better world for people with CHARGE syndrome.  If you like what you heard and you like what the foundation does on behalf of families and children with CHARGE  syndrome and you think that's important, please consider becoming a member or making a donation to the website. The presenters will take turns sharing their story and there will be time for questions and answers at the end. If you have a question feel free to write it on the chat hard-- the chat pod and indicate the question is for. We will make sure to cover after-- cover any story-- any questions after everyone has joined-- shared. Thank you for joining us and think you for being here with us.-- Thank you for being here with us. I think we are starting with Minnie. 
>> Hi there everyone. My name is Minnie Lambert.  We call ourselves the Lambert Delaney crew. It's me and Andrew's father Doug and our son Andrew. I call him our guy in charge. He was born in 2003. He was not diagnosed until he was close to three years old and now he is 15 years old. He is a healthy teenager and thriving in life. He has a sense of purpose and belonging and we feel that he is on a great path to learning about independence and a path that will lead us to his future. There's always a but. Life has never been easy and this is what I see when I look at him versus what other people see. All of his struggles, all of his challenges, I only see that little baby laying in that bed. It all goes back to everything that he has overcome to be where he's at today. Andrew has had dozens of surgeries. He has had 4 open-heart surgeries. He went to school when he was three years old just like most children do that are coming off of that. He was ready for school, he knew how to write his name, he knew his ABCs, all of his colors and everything. The one thing he did not know how to do was to belong. He did not know how to belong in school. No one knew how to understand him. No one knew how to communicate to him, and no one figured out how to access Andrew.-- How to accept Andrew. I made it my mission to educate myself about CHARGE is much as I could and how it impacts  them in daily life.  I call my CHARGE friends my people because I found my peeper -- I found my people and they helped me to educate myself. Certain people on this call with me tonight to be able to come the advocate that you needed that it was me and me alone to make sure that it was-- that he got what he needed. We fought our way to everything. We actually fought our way to school. He is a residential student and this is his first year. That little baby that I've tucked in that I never thought that I could live a day without is making me proud on a daily basis because he is continuing to live up to what that but meant. The things I wish I would have known when it comes to him is never say what he can or cannot be able to do. We always expect the unexpected. Not everyone is here to help you or to help him. I learned very quickly that I need to deal with my grief or my grief would deal with me. We are constantly mourn the fact that we have children that are different. When our friends are having children at the ballpark and getting to play ball we know that our children can't do that or can't do it at the level that the quote unquote normal children do or the typically developed children can do. There are things that children can do that he can't. I would-- I learned to love strangers as family. I call my CHARGE people my people because they understand me at a level no one else does.  We begin to view the-- view family as strangers because sometimes they won't get it. Sometimes you don't have the energy to be able to explain it to them some most importantly what I learned about Andrew is that he was deafblind. I never knew what that was when he was born. When he was 12 or three, 4567 all the way until he was eight years old. And then I learned what deafblindness was and that was when it changed my-- changed our life. I started learning about it and learning about how children with deafblind are different and how they access the world in different ways. It taught me how to communicate with Andrew and seek the people who knew how to help him. Like I said. He is 15 years old. He is at his first year at Perkins school for the blind and I am always so proud of him because he always does above what we expect him to do. That's the end of my presentation.
>> That was very nice Minnie. Thank you.  Now we are going to Kim Lane.  Are you ready?
>> Can you hear me?
>> Yes. The only thing-- I don't see the arrows on the bottom of my slides.
>> Did you get it?
>> I did yes. My name is Kim and here's a picture of my family. My husband is Mike and we have two children. Ryan Hughes 9 and Allie who is 4.  My husband and I were raised in North Carolina. We enjoy traveling, relaxing, being outside. We are not the most of interest people-- the most adventurous people but we enjoy having fun. Here are some pictures of Ryan. Kind of a history of Ryan. This is one of the maps from our person centered planning meeting that we did I guess last spring. His history is like a lot of other children with CHARGE. He had lots of surgeries , cochlear implants, feeding tube. He is more on the medical side as far as all of the different things that he has, as far as helping him still survive. Kind of some highlights about our journey. With Ryan probably the most exciting thing was him coming home from the hospital as a baby. We didn't really know what it was like to come home with the baby and we found that out after three months so that was kind of a different little story there. Him getting his cochlear implant was an exciting time for us. Learning how to communicate which is an ongoing process. When he first began walking he started walking at about the age of three. That was an exciting time. Going to school was exciting. I always say writing the-- riding the school bus was exciting because I think that was such a normal thing that you did with children when they became school-age. So it was just a very exciting time for me. I don't know why but it was just special. Having his sister, and something ongoing as how we work together as a family. Our family works really well together as far as me and my husband able to get this done and we work pretty well together as far as getting things done to help Ryan. 
>> School has always been-- I was a special education teacher prior to becoming a mother so I knew it on the other side of the table but it's totally different. I say that I have to feel like I come into the meeting with my boxing gloves on ready to fight. In a positive way. I knew that going into this so at age 2 we did start him in a private, like a special-needs preschool and I really wanted him to get out of the house. I wanted him to be around other peers. He did have a nurse who would go to school with him. I believe it was two days a week for a few hours and then at age 3 he started the public education program. He was at one of our community schools and had a really awesome teachers. She was great at communicating with me and letting me know things that are coming up. He continued with his nurse. Age 4 our school district decided to start a deaf preschool classroom which is a different location so we did attend that classroom. It wasn't the most appropriate setting for Ryan. I think the teacher wasn't quite prepared for the different students she would have. For me I just felt like that wasn't the best placement for Ryan. At age 5 he went into a typical pre-K classroom a mix of regular education and special education. The teacher there was amazing. I believe this was the first year we decided that Ryan would benefit from a language facilitator. We had an awesome one who just wanted to learn about deafblindness and learn about Ryan and who worked really well with the classroom teacher. And then, he began kindergarten and he was at, again, our community school. In the neighborhood school just was not the most accessible for Ryan with his physical needs so we felt like the community school would be the best choice for Ryan. I became stronger knowing what feeling like I knew what Ryan needed as a learner and it was just hard to get that particular school and administration to see the same things that he needed. So reached out-- we reached out on a leap of faith and asked for a transfer for a school within our district that we heard might be a good option. He had a Masters degree in low instance learning. She's willing-- if she would be willing to get a Masters degree maybe she'd be willing to learn. Early November Ryan is in her classroom at this different school. My stress level has come way down. It's just amazing when you have a teacher who works and is willing to learn about what Ryan needs and that's important to us. We don't know Ryan's future or any of our futures. Our hopes is that he will always be involved in the community. That's such a big thing, being surrounded by friends and family that love him.
>> Like I said we have two children. Ryan was the first child so we did not have tons of expectations. We weren't quite prepared for the journey that he took us on. Over the years we become very involved and have had some wonderful opportunities to learn about deafblindness and know where we need to go and what we need to do for Ryan at home and in the community. When he was 4 he had a typical sister. She was quite a surprise to our family but I think it's so exciting to see her develop as an individual and just the caring that she has. She accepts everybody and doesn't really even look at Ryan as someone different. It's just her brother so that's neat to see that as she grows.
>> Some things that I wish I had known is to just be patient a special with-- especially with, I want everything done yesterday. Just to learn to be patient and people have to figure things out on their own time but also to be patient with Ryan and know that he can do it. He will learn. We may work on a skill for three months and we give up and into months he starts doing whatever skill we needed him to do. It just comes with repetition. I wish I had learned to be a better communicator for things that I want or need and to express my concerns. Maybe I need to ask a question whether it's to a teacher or a therapist. To be more resourceful. I think our state is great. We have so many resources for children like Ryan but to be able to reach out and find what will work for him in our state, and also to be more assertive and say things that I want to say. I've always been a meager person and I've really learned to be more assertive but that has taken me a lot of time to learn that. I may work in progress, always advocating for one of the most important things in my life, my son. This is maybe some advice that I would give. I have a disclaimer that these are my thoughts and feelings. I'm not a professional but just a mom. These are the things that I have done over the years. He has a neat personality that I make it more exaggerated than it is. He doesn't verbalize so he signs a lot of things but I will give him a voice out in the community and people light up when they see that. I've become aware of nine-year-old toys trends and clothes. I tried to make sure that even though he is different, he fits in. That he's kind of that cool kid. Like I said prior, our community, I've only lived in North Carolina. I was not too far from here so I will always be here and to be involved in your community, I love teaching others about Ryan especially little ones. They are always interested. He has a feeding tube and a cochlear implant and it's always fun to teach the other children about him. I think something that has been important that I've been able to learn from others is to connect with anyone and everyone you meet. There has been so many times I've met someone in public and I will say my uncle such and such an assignment which. Let me help you with that. Or this doctor would be great. That may have helpful information for you. Like I said, we love living life to the fullest so we are a kind of fun and crazy family but I think this journey has made us realize how important life is and to enjoy how much you do have.
>> That was lovely. Thank you so much. Have fun to see the pictures of your family. Now we are going to Erika Watts who will take us  on her family journey.
>> It's great to be here tonight. I loved the mustache picture that you had of your son. That was so cute. Just to share a little bit, and I may not have figured out how to advance the slides either, I may let you help me with that.
>> To introduce my family we live in South Carolina. My husband and I have been married 16 years. I have a son who is 13 years old who has CHARGE syndrome and  a daughter of you who is 11. We also love to travel and have adventures. One of Holden's favorite things is water. We go to the beach and even the bathtub. He has a lot of fun time in the bathtub. It's the simple things he enjoys. Just a little bit about his history. He was born without any major issues at birth. We did not notice he had issues until his first check up with the pediatrician. She noticed his heart defect and my husband noticed others about a month old-- at about a month old. He was not diagnosed until aid-- age 3 but he does not have the-- which is interesting and we've been lucky that he has not had a lot of the intense medical issues that a lot of kids have had. To be honest, when we go to the conferences I kind of have mom guilt. It's a strange feeling but I feel a little guilty because I talked to so many parents who have been through so much from the kids and it breaks my heart to see families go through this. But, to see how resilient these kids are going through surgery after surgery, they just do great despite all of that. For Holden that has not been his challenge. He has had significant developmental delay and intellectual disability. That has been a lot of the big challenges for us. He set up a loan at age 2, he walked at age 4. He is nonverbal. He did not have surgeries until recently and in the last year he had rods for scoliosis and had his ASC closed. He's done very well with that and we are happy he's doing so well with that. He does need help for about every activity of daily living. He needs help to feed himself, he needs help with the restrooms, to get dressed, to do just about everything. He is currently using an application that has been one of our big challenges with figuring out communication. He does not have a vision or hearing issue but intellectual disability has made it very difficult for him to learn to communicate. A lot of our journey has been figuring out how to find his voice. We spent a couple of years just teaching him how to isolate his index finger so that he could access an iPad. One of the things I wanted to encourage parents to do is figure out that he's. I know it's more complicated with those issues but we have different journeys and I would encourage you to make that effort to figure out how your child can communicate because it's such a hued-- a huge piece being able to interact. For us it has been a long journey but he's finally using an iPad and he knows important things like cookie and music and the things that he loves to do. Now we are trying to move it beyond that. He started receiving therapy at six months and immediately we knew he was going to need some support. He's had all the therapies and we've done all of that. He started public school at age 3 and has been in special education classes for students with severe intellectual disabilities. We actually had really good options for his elementary school years and it worked well for him. He loved school. He really enjoyed it. Then we hit middle school and there was just not a good option. The class was not a good fit. It wasn't what we hoped for with the teacher who is engaged and really willing to teach us-- to think outside of the box to help him. So we made a difficult decision and decided to leave the public education system and we technically homeschool him. He has a secondary diagnosis of autism so we were able to get ADA services and he spends a lot of his time getting one-on-one therapy and they work a lot on functional things to help him be independent. Some of the lessons that I've learned, one of the early things that I learned, and a friend helped me with this, is not to borrow worry. I don't know if that's a southern phrase or where that comes from, but basically what I learned was that I cannot do well on all of the what if's and things that might happen. I have to dwell on what does he need today and focus on that. I also learned to be careful with the Internet. It's a fabulous tool to educate ourselves but I also found that it can tenfold increase anxiety. You start researching and thinking about, like I said, that what it's.-- The what if's. I would encourage people not to go down that path because you spend a lot of your energy worrying rather than being able to focus on what is most important in meeting the needs of your child at that moment. Another thing that has been helpful is finding community and finding people who know local resources. We've driven to many states to find resources to help Holden. The way that I find a lot of that information is through other parents. I go to a support group for moms with kids with special needs and the conferences are amazing for finding people who understand and finding educators and people to help with your specific needs. I just encourage people to use those resources because it has helped us find the best with providers and ideas on where to go next on our journey.
>> One of the other big things that we chose to do as a family, not to let disability define our lives. Spending a lot of time and energy meeting his needs but we found it important as a family to make sure we are just doing family things and enjoying our life. Trying to spend time, it's hard to do but with our daughter alone, getting the energy and love to support one another. To be close-knit and happy, and I think balanced. We've enjoyed a lot of adventures with Holden of-- as we've gone to different places to get him what he needs. We make sure we do something fun wherever we may go just to make sure there's something for everybody and not just Holden. Of course he has a great time. Whatever we do he enjoys it. It has been amazing to have Holden in our lives. It would not change a thing. Thank you for letting me share.
>> My name is Danette Roth and this is our journey with  Lance. Lance is 20 and this is a recent nature of him. He turned 20 a few weeks ago. He is still in school and this will be the last year but we will face a new journey trying to find placement and places for him to be once he's done with school. I didn't realize until now how convenient it was for him to have school and knowing the teachers and constantly knowing where he was and who he was going to be with. Now having to choose someone to be with him in the morning before he goes on to another program is kind of a struggle for us right now. This is Lance and this is our family. Joe and I have been married for 20 years and we have for my children. Lance is the oldest. Gretchen is 16, René is 14, and Jackson surprised us. He's 8. My girls play competitive softball are-- so we are always at the field. We've never let a child with disabilities stop us from what we were trying to do and I feel like sometimes that has created a monster because he does not like to be at home anymore. He likes the routine, he doesn't like anything to be changed. The way that we get ready for school has to be the same daily. When we get ready for bed, the way we take a shower, everything has to be exactly the same. Because of him and his deafblindness, that gives them the opportunity to constantly know what is coming next. There are no surprises. He just always knows what to expect.
>> He loves school. When we have snow days and when we start summer break or spring break he is still up packing his backpack and doesn't understand that we don't have school that day. He loves being in school. He loves doing crafts. There's a program at his school where he can stay after and do crafts on a weekly basis. He loves taking baths. We took into the ocean a couple of times. I've taken him to swimming pools and he enjoys that. He does therapy on a weekly basis after school and I'm fortunate enough to have a lot of family support. I come from a large family myself and they help out a lot. My mom takes into-- every Tuesday.
>> Lance had a lot of medical issues when he was born. When I was pregnant they found out that he was going to have a heart defect. We thought that was all that he was going to have. He was born at the hospital and we were there for about a week. He was transferred there when he was a week old. He was diagnosed with CHARGE syndrome.  His vision has-- anything has to be with presented within 4 inches of his face. When he was a-year-old he had to have his heart defect corrected. We were so excited that he broke 5 feet. We lost count after his 14th surgery. He is completely deaf and was a cochlear implant. They have seen instances where they think your response to the cochlear implant. The only thing we were hoping for was that he could use the hearing to help them but not necessarily learn how to speak like a car is coming. I cannot get him to wear his implant at home. He will only wear to school.
>> When he was first born he was so medically intensive we had to have a nurse at the house and the first couple of months we could even transfer him via car. We had it ambulance take us to the hospital. He started early. They came in and started working with us for our key parent-- occupational therapy, speech therapy, and he started preschool at two years old. He went to school called children's center for the visually impaired and another school called the children's therapeutic Learning Center where he was learning sign language. When he was about to start kindergarten the school district did not want him entering the public school system and we had to fight the school district by hiring an attorney. I was hoping the school they wanted him to go to would be a good fit and it was not. Unfortunately the state got involved-- fortunately the state got involved. There is a program for deafblind students at the Kansas State school for the blind where he attended for two years on the purpose was to work intensively and transfer him to the public school system. What they learned there are going to teach his teachers in the public school so they could work with him academically. He was there for his first and second grade year and when he was to be in third grade he transferred to the public school system and it ended up being a good fit for him. I have really enjoyed working with most of his teachers. There's always a few that just-- it just wasn't a good match but currently in high school this teacher has a lot of resource-- resources for his transition out of high school. The impact that it has had on our family, he was my first child so it was quite an adjustment. Having a first child and then having a child with significant disabilities. There were a lot of questions and we didn't even know if we wanted to have more children but obviously we did. We enjoy them. The positives. You get a lot of looks and people questioning but in a lot of cases people are very empathetic and I tell them I prefer they ask questions because I want to educate those around me. It's not only just responsibility for myself but my husband and now the girls have taken a on a lot of responsibility caring for him. We say that he's a gift. I went to-- I went back to school to be a special ed teacher when he was born. The way that they encompassed the learning was amazing and I knew that I wanted to do something like that. I know there are very few people who would be able to see both sides since I have a some of disabilities I know it families are going through whenever there children are in my classroom. My daughters want to go into the medical field and I feel like if we had not had Lance, I don't think any of us would have chosen the path that we have for ourselves.
>> Educational lessons I wish I had known, it took a lot to build my confidence as an advocate for Lance. We didn't know that he was deaf until two years old and we had a lot of battles with doctors. We had been through six or seven EMTs. Some told us he could not-- they could not do anything. We learned a lot about policy and procedure. I've had to have conversations with staff because they would just assume we didn't care or that we didn't want to know what was going on and at one point they transferred him and we didn't know where he had been moved to. A lot of times you need to trust your gut. You know your child better than anybody else does and sometimes you're the only voice they have. I learned that when I think there's something going on I'm usually right and I just need to find out what's going on or what we can do to improve the situation we are in. Just trust yourself because you do know them the best.
>> Helpful advice. It's been hard but worth it. I've learned a lot. I took signing which classes which also helps me teaching. Having expectations for your child, they may not-- they are not going to be the same for everybody but a lot of times they will ask prize-- they will surprise you. Expect change. A lot of times what you think is going to work is not going to work and you have to figure it out as you go. There is a huge support system out there. A lot of the support I've gotten has been from the school. He has a County case manager and they have provided a lot of resources for us. Like I said. You are your child's strongest advocate. Lance, I think he was about 3 and when we were in Orlando about 2 years back.
>> I'm speaking from the national Center deafblindness and I'm honored to be a board member. I've noticed that several of you put questions in the chat pod and we would encourage those of you who haven't, what we are going to do is, Susan is going to read the questions from the chat pod and direct them to the people that we are guessing that you are intending them for. Then the ladies can take turns answering questions for you.
>> I want to add my comments. You ladies are wonderful and the questions have been coming in. I've been trying to note them. I will start with general comments first. If I mispronounce your name, I'm sorry. She says you're so brave. Kristin has said the siblings of these kiddos are amazing too. It's amazing to watch them together. Even if you didn't have an opportunity to see them while you were presenting your own information. Maybe we will start with the order that the questions came in. The first question is from the Doria and she would like to know if you have any advice about how you got injured into Perkins and how did you convince your district to allow that?
>> It was not pretty, we will just say that. How did I get him into Perkins? It has been a long battle. When I learned that he was deafblind at eight years old, it was through connections and it was Pam Ryan who said have you ever contacted your state-- project? 
>> He's not deaf nor blind so why is this woman telling me to do that? After long discussions and finding that-- like the people at the foundation, I started learning that he was-- wasn't different. He was a typical child with CHARGE syndrome. He have communications and a laundry list of health problems  but so did all the rest of them. I started educating myself and it was injury that empowered me to do what I do today. Today I worked for the parent and. Organization and served on the education team so it's my job to educate parents about their rights and responsibilities about special education law. I use the same knowledge that I have been trained on by the organization that I work for two advocate for my own child. I was faced with the team that did not know anything on deafblindness. I relied on getting assistance without advocating for Andrew. Andrew went to school when he was about five is when he started with the segregated classrooms. He was in a one-on-one classroom, he and the lady they hired to be his assistant. The only time-- when he was in third grade. If I could-- forever he would not be where he's at today. It's like we traded one hell for another because every year we were going to a different teacher, new people that had to be trained. The state got involved in 2016 which was last school year. Before that, 15 or 16, we did one last push. One last hurrah. We did trainings, modules, and everything we could possibly do. Injure was in a one-on-one classroom with a one-on-one assistant and a one-on-one interpreter and he stayed there all day long and he was in hell. I basically told our director who is a retired special education teacher who came in to try to fix some issues with our district that they had tried everything they could possibly try. I set I'm not asking you to do anything that you will-- the only thing I ask you to do is if you cannot do it, please guide us somewhere that can. It took a lot of praying fighting begging and pleading and thankfully we did not end up in court. Our district realized that it would not only save them money, but it would also meet Andrew's needs for him to be at Perkins. There is a valuable member in services and trainings and even with our deafblind project, nothing that anyone tried ever seemed to work because people did not know how to access that. It was not an interpreter he needed because he doesn't speak signing which. He had the communication abilities of a three-year-old or four-year-old. He did not need someone interpreting. He needed an intervener. Then you have to get someone and train them. Basically what-- the way that he got into Perkins is that the clock ran out. He's almost 16 and if we did not make a move and if we didn't do something, we would just be stuck. It was not me. I've cried lots of times because he is my only child and as you can see he has made a big impact on my life and even volunteering. It takes a certain level of crazy but he has given me the real. I know what it's like to not know what resources are out there and available. I always say it's not me it's him. Right down to the teacher that he has right now today, I can remember when he went to Perkins, the first thing-- he was labeled as an academic kid. And I cried. He has never been labeled as an academic kid. He was always pushed into the corner because they didn't know what to do with him. Now he's Perkins and he's an academic kid. The first thing that I heard Sharon say when she talked about him was telling the therapist to set the bar high because injure can do it. But he would gladly not do it. But he set the bar high-- but if you set the bar high he will do it. So I always say expect the unexpected which can be a good thing or a bad thing. Andrew is just amazing and I think God every day that he made me Andrew's mama. Whenever I grow up. That's the long story.
>> Thank you Minnie. That's words of wisdom I'm sure a lot of the parents will appreciate.  We will give you a break and go to Kim. There was a question particularly for you. I'm trying to keep track of what's for all of you and what is for specific people. Steve and Liz wrote that they would love to hear more about what you would call the language facilitator. I see your mouth moving but you are on mute.
>> Can you hear me now?
>> Yes, thank you.
>> Ryan got his cochlear implant at one of our university hospitals here. I worked closely with our audiologist in the beginning and honestly I don't even know how I remember falling-- finding out about a link which facilitator. Our state has this role and I went and pulled the training that I went to. I went to this training before I had even had a facilitator. I'm going to read it from the training. It's a trained staff whose role is to facilitate communication among children who are deaf or hard of hearing. This person also serves as a liaison between the teacher of the deaf, the speech language part-- thing which pathologist and the teacher. A lot of this journey I think is becoming and developing a relationship with the people in your child's life. I feel like sometimes I am brown nosing but I have to have that relationship so that they can get to know Ryan and our expectations. I came close-- I became close with our interpreter. I will send her a text message. Whenever interpreters out she will let me know that it will be someone different and sends me a picture of that person so that Ryan and I can discuss that it will be different that day. It has taken a long time to get that relationship but I've been so lucky and blessed to handpick the individuals who are linkage facilitators. Ryan just qualified to get some community and home services so I reached out to the facilitator and said do you want to take on this role and work in our community and do some stuff at home? She said oh my gosh I would love it. She's young, she doesn't have a family, doesn't have children, but I'm able to work with her to train her on how we communicate with Ryan hopefully-- hoping that follows in the school setting. I don't know if that's a national role but I know that our department here does look at that role.
>> It is documented that he has a language facilitator/interpreter because you don't necessarily have to know sign language and that's right now, one of his main modes of communication. That's why we do have/interpreter. Sometimes it gets tricky because they want to interpret a lot of things and that is a lot of teaching and educating but so far it has been good.
>> We appreciate that.
>> Moving on to a question for you Erica. If you wouldn't mind sharing if Holden has had any MRIs, and if he has, do those results indicate anything significant about his developmental and or intellectual delays?
>> He had one early on and it did show some differences in the brain. It has been many years so I can't remember exactly how they described it, but they did show that he had some differences in his brain size and he has had so many tests and things done. But there was a difference, so really from infancy we knew that he was going to have some intellectual challenges. I also happened to notice that Victoria asked about the unique curriculum. I work in the school system as well. I'm an occupational therapist, so I have seen kids use that and it works well for kids who have language problems because they use a lot more pictures and a lot more visual versus having to read and use words and language to learn. I just wanted to say that because I saw that question.
>> While we are on that, thank you Erica. Before we go to the questions specifically for Danette  because I have about six for all of you. Does anyone else have anything they would like to say about the unique curriculum?
>> That's what Perkins uses.
>> Anybody else?
>> That's what Lance uses also and I use it in my classroom at all. I work in a different district then Lance goes to school in and both districts use it in Missouri. 
>> Thank you, I appreciate that. We will come back to you and I think this question was raised when you were talking but I think Kim's response would be interesting as well. At what age did your child get a cochlear implant? Let me ask them all. At what age did your child get the implant? Did you find the training period to be difficult? And if a family is considering getting a cochlear implant in the future what should they expect? Danette  do you want to take that? 
>> Lance got his when he was five so he got his about 15 years ago. At that time there was no training for us. They did testing on him and determined he would qualify. The training after that was basically asked taking him and to have a speech language therapist working with him and then they coordinated with the speech language therapist and doing the same things with him. What was the last question?
>> What should a family expect if they are considering a cochlear implant for their child? 
>> My expectations were low because I know that he would not use language to communicate and I just wanted him to have sound for safety purposes. Like I said. He got his about 15 years ago. They really could not tell us at the time what he would get from it. I did forget to add in when I was speaking earlier that at that time, Lance was supported. He had a walker with him at all times and we went in for the surgery. When he got out of recovery he got up and started walking independently. They said they think what happened is that the equilibrium inside his brain, each side was fighting. Each side was fighting to take over so they were fighting themselves more, which actually inhibited it. When they did the cochlear implant on one side it completely killed it on that side and he had balance and was able to walk. So little things in the strangest places happen. 
>> I'm so glad you told that story. I appreciate it.
>> Could you share about Ryan's implant and if you have additional responses?
>> Ryan now is-- can you hear me? He is 9 and is only general-- unilaterally implanted. He was a little over the age of one. And everything seemed to be going well for just as like any electronic device it could fail so he did receive a second surgery for the implant. Of course my clock telling-- is telling us that it is 9:00. I will wait a few minutes. Let me see. The training again, we were at a university hospital here in North Carolina. They are a big teaching hospital so there was a lot of trainings and things in place for me. He was still in the early intervention programs so our teacher worked really closely with us and happened to live super close to us. So we again got involved in the community and tried to see her however-- whatever we could to learn what we needed to do to help Ryan with an implant. It was a major surgery and I don't think I knew that going into this. I knew it but it was like the last thing on my list. But it was a major surgery. It was very lengthy and they come out with the cone on their head. It was our first child. We didn't know what to expect. It was just kind of scary and the expectations, and I agree, we were hoping for sound awareness even though technology had improved. They still could not really tell us what kind of sound he could get with it. There are times that Ryan-- it's on him all the time that he has learned to flip it over but then if he sees me talking to him he will flip it back over. I know he does get some from it and he can follow a lot of verbal directions without me signing that it's time to feed the dog forget your shoes on. He does know what he needs to do with those so I hope I answered all those. 
>> You did a great job, thank you. I've been trying to keep track of these questions but I'm going to jump out of order because I'm going to try to connect them topically. The question is specifically for you. My child also will not were the implant anywhere other than school so she's curious if Lance have given you any indication about why he does not want to wear it at home.
>> My own opinion on it is that he gets so little from it that I don't think he benefits from using it at home. Being at home and having four kids and trying to keep up with life, as much as I would love to follow him around and make sure he wore it all the time, that's just impossible. I think at school he has a one-on-one at school and it's his routine at school so they don't have any problems with it. Been in the beginnings I think they had issues. He doesn't necessarily understand why it's they are because he's getting something but not enough to where it keeps him to where he wants to wear it all the time and I think that's why he doesn't wear it at home. 
>>  Thank you Danette. 
>> This is Susan. If I'm not interpreting questions correctly take me a correction and I will try to fix it. The next question is from Kristin to all four of you. Anybody everybody chime in just not all at the same time. Kristin asked,-- Kristin asked if any of your children have-- syndrome? Does anyone have anything to say about that? 
>> Holden does not have it. I'm not familiar with it.
>> This is Minnie. Andrew does not have it  but I googled it, what Erika said not to do, I did. It talks about delayed or absent puberty and those kinds of things. Andrew does have that. He does take a testosterone injection every 14 days because his body does not produce it, and I also see a lot of the things associated with charge are listed in this list of things as far as puberty issues. Some of their reproductive issues and smells and things like that. We don't know if Anja can smell. We are trying to figure that out. We are teaching him life as he can do it because he can read and write. He cannot-- if you cannot smell that milk is a sour we want him to at least read the expiration date. He does have-- in charge which is the same thing. 
>> Can I add something there?
>> I don't know who's talking. 
>> It's Pam. The syndrome itself is its own syndrome and related to puberty. Who needs what for growth hormone and all the rest. I think with our CHARGE people it has been my experience, with people that are not so familiar with CHARGE , they will start calling it a separate syndrome from CHARGE but we know our kids  have that kind of issue in terms of hormones and growth issues. They call it different but it's really not a separate condition.
>> I was thinking the same thing but I didn't know if I should say anything or not so I'm glad that you spoke up. I appreciate it. You are great. I'm going to keep the questions flying. Is that all right? Are your children, and this is for all four of you, are your children toilet trained, and if they are, did they start walking before they were toilet trained or after?
>> He will use the restroom but is not able to tell us but if we catch it then he will use the restroom but is not officially potty trained.
>> Thank you. Anybody else want to chime in?
>> Thank you. Lance is. 
>> Andrew is and after he was three but is not visually potty trained and he was about-- until he was about 10 years old. Incontinence, for number two it was when he was 14. 13.
>> I appreciate those details. Thank you.
>> No seriously. Families want to know. Then there was a follow-up question. Are there any particular resources? Any particular resources about potty training that you would share with the group?
>> Ryan is not truly changed-- toilet trained. We spend a lot of time talking about the toilet.. We can walk to it, sit on it, we can get off the toilet, but I agree that it's the communication factor. If we can catch and we can go and picking up on his body language when he does need to use the toilet.
>> Think you can. Anyone else-- thank you.
>> We had it on the schedule where I think that because Lance-- 30 minutes after his feeding so for about a month I had him on a good schedule. If he's sick or something happened at school, and from that moment I have not been able to get him back on a routine or a schedule to when I can toilet trained him. Unfortunately I don't have anything else to add. 
>> This is Pam. If you go to the foundations website and go on to resources there is 1 billion webinars and it feels like 1 billion. There's at least one on toilet training. She's a behaviorist and worked at Perkins for a long time in her thing was toilet training. And she believed that all kids could be toilet trained. It may take a long time but it could happen. She follows, and it's funny. She followed the box-- the Fox and-- program. It's just getting her kids to the bathroom and only paying attention to toilet training over time. I would go to the website and go on to resources and you will find that paper but you can also look up Foxx and Azrin. It's a very tried-and-true program.
>>  Sorry to interrupt. My name is Linda, my daughter has CHARGE syndrome and we use that method. After many years  she finally got toilet trained using that. And it is tough. That we tried for many years and it finally worked. And she got toilet trained about eight years old.
>> Which is really good actually, eight years old. Doesn't feel like that to you I'm sure. We tried for five years and that was finally when that method was introduced. Everyone would always tell me that she will tell you when she's ready and I didn't want to believe that. With everything else that we push, with walking and feeding, we thought that if we pushed toilet training it will happen. On and off we did it for five years and the last method that we tried was that one and it finally worked. I don't know if it was the method or she was finally ready but she did get potty trained with that.
>> Thank you.
>> Moving on to another question. Hannah I'm finally getting to your question. It's a very different kind of question but it's an important one. What kind of plans should parents think about in regard to care for their child wants their child becomes an adult and US their parents are not going to be around to care for them anymore? What kinds of plans have you thought about or put in place?
>> We have guardianship of Lance currently when he was in the state of Missouri and another specific County at 17 years and six months old. We contacted the court about seeking guardianship for Lents so that was the first step for us. Planning beyond that we are still working on it. He's graduating from school in May. The other thing we did was once he turned 18 we went ahead and signed up for him to start receiving Social Security benefits. So he's getting those now. We approached-- we applied for Medicaid. He qualified for some reason they discontinued, so we are in the process of filing again. They will pay for a personal care assistant so once I get the-- get him back on Medicaid we will look at specific skills to help him be independent. And then we are looking at a variety of different programs for him now. Once he graduates next year, I don't want him to be sedentary. I don't want him to just sit around. There are programs and our area where he can offer volunteer opportunities and we are looking at him possibly getting a job so we have connected with a vocational rehab for the state of Missouri also were they are willing to work on putting us in touch. I know that Lance cannot handle an eight hour a day job or a four hour a day job but if I can get him out where he's doing something, that's what we are trying to promote for him. I hope that helps. 
>> That's excellent. Lots of good things. Does anyone want to add to those words?
>> This is Minnie.  The transition age begins at 13 so we are kind of above the federal age of 16 so we have to start planning with our local team here that did not understand him at all. Our deafblind project has been helping a lot thinking about the issues around center planning and Perkins is doing this model with center planning and are working their way back from seniors down to teenagers. I have goals and aspirations just like any other parent would have goals and aspirations for their child. I don't know if he will be at Perkins until he's 21. That's my hope and desire that I will be able to keep him there and he can finish out his education. We had 5 different post secondary education programs so my goal is that maybe when he comes back that he would be able to attend one of those programs. We want to make sure that he learns what his options are and that they are available to him. I'm learning a lot more about customized employment. The cupcake business and he's learning about money and skills. All the skills that we could. The biggest issue is that my mother and my father are deceased. My husband, Doug, Andrew's dad, trying to figure out what happened to Andrew and it's something that we really do have to face and that we have to have really big conversations with our family about. We live on a plot of land that was a family plot of land. My hopes dreams and aspirations are for him to live semi-independently in a tiny house in our backyard. And they just pick up his tiny house and move it wherever he goes. Andrew is the one that put these thoughts in my head. We don't know where we are going but always keeping the cold hard reality that life is different for us and there are things we have to face and that we have to make decisions about. And also, trying, again, to learn as much that's available in the resources in your state and tap into those resources as much as you can. There a wait lists for adult services that your child has to be on and I can see just because that's what I do on a daily basis, our waitlist is 5-6 years long. If you don't know to have your child on those waivers. For six years or you waited too late. Never think that someone else is going to come to you and give you what you need a.-- What you need. It's all about empowering yourself to be able to help your child whether they are three years old, 13 years old, 23 years old or however. In the end they end up shaping us to help anyway.
>> Interestingly I met with a financial planner yesterday. It has been on my list of things to do to figure out all of these things we are talking about. I decided-- who understands special needs in South Carolina and then of course you need to meet with a lawyer and in addition to the financial side you need to have a will. These are basic things that I think we know but we have time and energy to do a lot of. If something does happen I will sleep better once we get everything together but there are people who have a lot of training and education to do those things so use your resources, like Minnie said. 
>> Just like Erica we've gone to financial planner and found a lawyer that knows all of that and I think that did make me feel better. Ryan is younger. I'm kind of that weird parent who, I follow the older parents around. I want to be them when I grow up, and they just have the neatest ideas and have so many resources. I think learning from other parents is important as well. What is our life going to be like for our children? And it is important to know but to reach out to other families who are a little closer than we are in that stage.
>> Thank you all of you. All four of you had great responses. We are starting to run out of time. There's one set of 2 related questions that I will think you could have a chance at to answer quickly. Self-injurious behavior and has your child experienced meltdowns or self injurious behavior? In the older and bigger the children get the more concerning it becomes. Do you have any words of wisdom? And what Pamela said about the resources. Does anyone have a few minutes at the most? 
>> Then I'm going to throw it back to you. My final comments would be that a comment in question about resources, people encouraging other people to check out the syndrome foundation. Perkins website has webinars and the national Center on deafblindness. Each of your states has a project on deafblindness. There will be repeated-- repeated comments. Thank you for the words of wisdom and for your insight. Back to you Pam.
>> On behalf of the foundation we want to think Minnie, Kim , Erica, and tranny.-- Erika And tranny. We are all benefiting from your experiences. And we want to think Robbin for ensuring that technology  worked well for our webinar tonight.
>> A quick favor. Your input is extremely important. To let us know what you thought of the webinar this would be grateful. We hope you will join us for our next webinar which is Wednesday, January 16. It's the impact of raising a child with complex needs on a family. All four of you touched on that tonight as well. One last thank you to the presenters and the attendees. We hope you have a wonderful remainder of your evening and thank you for supporting the CHARGE syndrome foundation.  Thank you, everybody.
>> [ event concluded ]