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

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>> Okay. I am showing we are at the top of the hour. This is Robin Boll with NCDB. I want to begin by welcoming everybody . I'm going to through -- I am going to go through some housekeeping items before I handed over to making. -- Before I handed over to Megan. First of all, phonelines are muted to reduce background notes. The question and answer session will occur answer session will occur at the end of the presentation. However, you can write your questions  in the chat box at any time during the presentation. It will be monitored through out the webinar and preparation for the question and answer session. We want you know that this webinar will be recorded and archived for future viewing. It will be posted on the charge website. We do want to ask you to be mindful of your comments in the chat box -- please refrain from using sensitive or personal information. Megan, after the announcement your cue to start. 
>> Robin, is it okay to start. I have a notice here and it is taking a little bit longer than usual, Megan. You can go ahead and start now. Okay. Hello, everyone. Welcome to the NCDB  webinar and the impact of having a child with complex no needs of the family the importance of self-care. I am a board number and then initiative need for families on death and blindness. We are thrilled to have you join us tonight. It is an honor for me to introduce my colleague Jane Villemez. She is presently serving in the family and  Gauger with Arkansas [indiscernible] called Casey. She has a bachelor designed -- a bachelor in social work. She was a stay-at-home work for 12 years and then moved on to social work and geriatrics and general health children's palliative care and hospital-based care  Mick -- and hospice care. As a reminder, this webinar will be recorded and archived for future viewing so please be mindful of your comments. It will be seen by anybody viewing this webinar. Please for -- please refrain from putting in personal or pertinent information. This is a non-for profit organization that provides [indiscernible] and families. Our vision is a burglar  make our vision is a better world for people with bad idea. Please consider becoming a member of the foundation at -- and you can make [indiscernible]. If you have a question please feel free to type it in the chat pot on the right-hand side of the screen and we will cover as many things as time permits. You can also press*six to ask a question. We thank you for your continued support and for joining the foundation. Without further ado I will pass the torch to you, Jana. Enjoy everybody. Thank you. 
>> I am genuinely honored to be asked to share this information. Especially with a group of courageous individuals like yourself. When I think back about what has brought me here tonight I think of the Arkansas families that have shown me courage as well. They have trusted me and brought me into their homes share themselves and their stories and all while raising their child with complex needs. That in turn gives me the courage to be able to share with you. While I do identify myself as a social worker and family consultant and coordinator for the Arkansas [indiscernible] project. My passion also comes from being a wife for 38 years to the same man and I still like. I am still getting used to being a mother in law. I also identify myself as a daughter of a mother who has been battling dementia. I'd -- I identify a myself as a sister and an aunt. I have watched and been and participated and have been active with my sister and her family as they go through the journey of having a child with special needs. 
>> Looking back I can tell you that my healthy intelligent caring sister worked tirelessly in a very unknown world of disabilities. She continues to strive to make a life with their that is inclusive. Respecting Serra with her choices and increasing the amount of independence that she can have.
>> All that being said, I have also observed the toll that it has taken on my sister. And her husband. The journey includes for both of them anxiety, fear, and first season -- unforeseen crisis and trauma. It has definitely impacted the whole family and individual way. When my sister began having the multiple unexplained health issues at an early age, that is when I realized the connection with her health between working tirelessly for fair -- working tireless worker family and putting her health class. With Megan's help and encouragement this is what I want to share with you. 
>> The research tells us about stress and our ability to cope. We also want to talk about the things that can compound our stress and ability to compile -- to coat. The importance of self-care and knowing your own needs, the needs of your child and your family to create a good life. Three -- to create value and your family. As we talk about this and as you listen, I think it is also important that you to relax as Megan has said and truly embrace yourself, your strengths, the gifts you have, and also growing and learning. Don't be hard on yourself. Just enjoy the information and take what you can from it. 
>> Here is what research tells us. What we do know for families and Joe Merrill -- from families in general the physiologist go, psychological, and social relationships with parents and their children may be the most intense life can generate. And when a family has a child with complex needs that need is even greater. Research also tells us that when we have had theoretical models developed and we also understand that family stress and adapting to the stress rose from the interaction of the family which depends on the stressor, the event, that goes along with the stress. The support systems around the family. The family's perspective of the impact, and then add to that prior crisis is that the family has endured. 
>> And that includes the type of research sources -- the type of resources, support, and perspectives that they have on those events that occurred. 
>> In social work and I have heard this reinforce that the family is as strong as their support. Research also tells us when families have the resources they need, they are better able to adapt to adversity by coping with stress and minimizing stress. Due to the complexity of our family and the child with the complex needs as you know we can already guarantee stress. I believe we can even be guaranteed some distress. What is important to think about our ability to cope and that is why we are here tonight. When I think about stress and distress another issue that comes up is the issue of fight or flight. You've probably heard about this. It is the physiological response to what your body does to react quickly to life-threatening situations. Is how her body prepares for what that perceived danger is. So as I think about an example something like a near miss carrack -- miss carrack -- missed car wreck. your heart might raise, you might get sweaty and perspire, my muscles go limp in my leg, those are the kinds of things that happen to your body when they are preparing for what you perceive as danger and life-threatening. What happened is the nervous system active rates  Mac activates cortisol to help a rev us up so we can protect ourselves. And when the threat passes, that tame cortisol chemical decreases. This is all without our control. Think about that as we also look at what researchers have concluded. And that parent -- and that his parents herons  make and that is parents whose children have any type of disability or illness report higher levels of both emotional and physical stress of parents whose children are healthy. What your body does after a traumatic events, those are major stressors that have either happened or they are near misses or that you worry and project might happen in the future based on the previous experience. And then it brings to question the idea of our bodies in a state of chronic stress. It does put us at high health risk. Here is a graph that is depicted on the PowerPoint that shows our or what our body does or how the nervous system activates over time. You can see on the right-hand side it is identified as a normal range. Above that is fight or flight response and then there is another responsive freeze. That is actually when we become an mobile to react to any of the stress because it has reads the past -- the task of fight or flight. We need to get back in the normal range. If we still perceived danger, though stressors continue and we feel like we are under attack. And we can till a new to remain -- and we continue to remain in a hyper alert phase. And then over a period that can cause health problems possible anxiety and depression, headaches, heart disease, weight problems, weight gain, memory and concentration. 
>> Just in general, we need to work towards being in that normal being in that normal rage by using relaxation strategies and  deep breathing and physical activity to help with that deep breathing. We need to allow more oxygen into our brain. Society in general spends a lot of time with shallow breathing. And more oxygen to the brain is a scientifically proven method that that can call and get you back down to that normal rage. The other area besides the breathing and physical activity, brings the back -- brings us back to that normal range prior to the traumatic event. We need to rely on our social support. Express ourselves and tell her story. And to ask for help.
>> The social support is also emphasize and terms of what the research says. It builds on the existing social networks, and enhances coping and response to adverse situations, and maximizes the families control over services send the -- since the family should be considered the expert regarding the child. You need to be informed and we need to be supported with choice. Providers and educators medical professionals need to be understand the need for you to have choices and to be informed as well so that you so that you can have the control that  you need and make good decisions for your family but to also feel empowered that again decreases the amount of stress that you have. 
>> We have lives and the medical model for how families receive support services and that normally looks like a protocol of experts telling you what to do and how to do it. It is not the feedback were we don't have great knowledge. They really do and we need them in so many ways. 
>> And the medical model what wasn't taught was to take into account that and to visit -- that ended to vigil family's needs and what the challenges are and even to look at at the history and allow the family to be informed and to make choices based on that expertise of the professional as well. There is some movement and you probably heard this especially at hospitals that they are trying to work more towards family centered care. We still have a ways to go. I just love there was a couple webinars ago where [indiscernible] has been working so hard and presenting new information and charting the life course. And now teaching families how to approach problems in order to really determine for themselves what the good life is really about and how to best get there. 
>> By -- I developed a visual quite a few years ago to able to help me and explaining why I do what I do for families and to also be able to use that as a guide for me as I go through the work of working with individual families and trying to measure to some degree if what I am doing is working. I am going to show you that model and layers. Know that is developed from a social work perspective. I have used it for providers and showing that it is important to be on the different systems and it or the impact of the what the family is going through with the child with complex needs. In addition to families being able to families being able to see where they are at. So the providers can see where  the families are and then can decide what needs to be done rather than want to provide intervention at a level that they think you should be at. 
>> Then for family I am hoping that you can see this as an opportunity to get some insight and to be able to possibly communicate with others. And also to validate the complexity of it. And know that there is a reason why it is complex and there is a reason why you may feel overwhelmed as well. 
>> As I said, I broke it down until layers to explain this visual. At the center of it is the family. Because of your deep sense of awareness and caring for your child, you work for change and you work for the desire to improve the quality of life for the child and the need to build those skills. You have a complex role and each family has a unique strengths and how they love and parent. You are overarching role is to be a mess all those goals but just to serve -- to survive the day. You want to improve the quality of life for your family. I use the term [indiscernible] and that is the goal and the education and on the information that I want families to have insight on. They are the ones that makes the changes for the core values that you have for your family. The other piece is to build and empowered you to have the self-determination that it takes to make change. With that self-determination, we speak of a lot we are transitioning out of high school what will happen after, they need to have their own self-determination. If you learn that as well, that is a great mode to be in. 
>> Around the family as the systems working for the family. It does get complex because within an each system it is highly complex and many times the family is expected to know and have information about that is definitely overwhelming for sure. Medical, especially for those individuals with charge syndrome. Definitely know how much time and money is spent and medical. And we are looking at just more than that we are looking at about the health of your child in the house of you and your family and that includes mental health only look at that system. The financial system, in terms of the reality of wanting and needing. To have an income that supports that family and in a very real way. Think of system of although laws that are creating -- that are created for the family. And the school. And all that goes along with your IEP teams in the state regulations and all of the diverse groups with individuals that work with the school and for the school. The system that gets overlooked way too often is a social network. As providers, we want to be able to assess where the gaps are. It is a social network that really can help make or break you, just as Crystal Bell talked about in the life course. You need to get creative and make connections. That is one of the key things that you can do to build your support system. That can includes  make that conclude -- that can include numbers of your family, extended family, members of your church, or members of community. 
>> The other area around the system and we want to have everybody realize what is going on with the parents and this is the adult life stage. Just like developmental stages for your child there are also relatively predictable stages that we go through that are based on our growing up time and hopefully some experience has given us some [indiscernible]. 
>> As you move through the adult lifestages, as you move towards different life experiences and different stages we will also want to acknowledge the grief, loss and trauma. It is experience with the family especially with those that have a child with complex needs. The up-and-down aerials -- is up and down arrows indicate that grief and loss and trauma. Grief is normally associated with the death of a loved one but it also can be any kind of loss it is important to us. Who we are and who her family is and what we envision in our life. There is a true need to make sense of it as we learn and grow throughout the adult stages. 
>> We are almost on with this picture but as we go through those lifestages I just wanted to [indiscernible]. In studying grief, the type that I think are important are family or one of them is called [indiscernible] grief. This is the grief that parents with the child with disability and society does not recognize it. They don't know how to deal with it. It has left -- parents have lack of support and there is also anticipated Terry grief. The loss that you anticipate while it is a struggle you have thought about it before and it appears to have meaning to you. And then there is complicated grief that applies to many of the participants that are on this webinar. That is that unanticipated loss that does not make sense and totally surprised you. You were hurt or shocked by it again, it is complicated. 
>> This is where self-care comes and to be open and acknowledge your grief. And to also give yourself time and you will find meaning and purpose. Our last overlay that you can see that is on top of that and this becomes really important to me as I explained to families and providers that the family is in need of connection. They need to help build up support system. And we can do it depending on where that family is and where their needs are. We can do it and an individual level. We can do it where the family is ready to be engaged at the community level or we can do it if the family is ready to provide leadership at a state and national policy level.
>> The levels of engagement are dependent on the needs are strengths of that individual family. It does not matter where you are at. It matters that you are engage and -- you are engaged and connected. The goal of connecting is to truly have support. And have a voice for your family. There is also something to be said and research and they have stated this to and sharing emotions with others. Both the joy and the pain. It is central to all of us. Not just individuals or families that have disabilities and all of us can share and connect with you as you go through that shared emotion of joy and pain. The parents less webinar and those parents telling their story. And the impact that it had on the participants in the level of engagement that pursued after that. And probably even after that call. We will probably hear more stories about that. It is shared emotion of joy and pain that makes us connected. It makes us feel empowered like we can move on. 
>> Research also says that our basic need in life is for relationships. While it is tough it is the best thing for us and we need to think about where we are in order to be connected. It includes your child and family members, extended family, providers, community and other parents as well. We are really according to the research wired for the need to be connect did. It it is [indiscernible] and leisure family we want this for you and what he wants you to be able to connect. 
>> That is one of the reasons that the charge foundation has worked so hard to have a charge liaison to connect with in your state within that and they can connect to you or you can connect with the national center of death and blind or state death and blind [indiscernible] to [indiscernible] with other parents too. 
>> Too often what has happened is that because families are on this ongoing battle ongoing battle of survival they definitely feel  isolated and are isolated at different times. We want to be able to provide that connection. One of the other ways first and foremost is taking the time to connect with yourself and care for yourself. You can do little things here and there to make sure that you are looking after your own well-being. Another term for self-care is self compassion. Kristen [indiscernible] has spent a few years talking about mindful self compassion. In the references and resources on their website and different references that you can take a look at. She defines it as when we give ourselves the same kind of thing care that we would give to a good friend. 
>> She believes and has shown to that while providing your own self compassion for yourself you will touch hearts and change lives for everyone. There is also this idea of our own shame and reuse aliens and overcoming that. It has been found that we really can help ourselves with self-care if we avoid and work on I should say our thought processes and thinking that we need to be perfect and comparing ourselves with others. We are really good at beating ourselves up and feeling like we are not enough. These are the things that we need to work on in order to build our own self up to have the self-care that we need and to make the connections that we need.
>> There is also a term that is being used quite a bit which is really helpful as I talked to families. I to families. I see it in families and  for everything that is going on families definitely have [indiscernible] as I talked about before and this is there reason units the posttraumatic growth that goes on because you have found new meaning and purpose in those traumatic events in your life. It does enable us to become more resilient and challenging times when we think about loving ourselves and providing some self-care for ourselves. Self-care is also important because it provides an opportunity for us to self reflect and contemplate. Looking back and seeing what we have been through and what we can learn from it and what we can do with what we learn from it going forward. Self-care is also an important because you need to take out  making need to take a timeout for yourself because it can compromise your physical and mental health and possibly living day-to-day and that chronic state of stress.   In that chronic state of stress. More thoughts on self-care. Truly acknowledging the areas of grief and trauma. Also being aware of your own needs and triggers those triggers that escalate your own anxiety and think about what they are and possible strategies that you could do to prevent that from happening so identify it and find strategies. The other is to work on healthy boundaries. This could be a whole mother webinar. We continue Whaley -- we continue to work about or on relationships. There are physical boundaries but I'm talking about internal boundaries that are those invisible lines are those invisible lines between your relationship  and the relationship with others. There are boundaries that we need to be aware of and need for our own self with in our family. And then at work, and in the community. It depends on your personality how to work on and maintain healthy boundaries. I would think that the majority of us can tend to be caregivers. As caregivers, there are general personality things like giving too much, over doing things for others, communicating for others and we want to be able to think about what it is individually that gives you heartache and your relationships and what you can do to help that. You want to be able to define what responsibility you have to others and then at what responsibilities that you need for yourself. And that includes your family. And that includes the responsibility that you have for your family. 
>> Maintaining healthy boundaries is a ongoing lifelong work as far as I'm concerned. To start it is probably best that you think about what you hold true to yourself to help guide you to make those relationships that you want and build on. These truths are the values and beliefs that you have. The values that you have and what you want for your family. And what you know to be true and right that can help guide you. The next challenge is in using your words. How you express yourself to others and your message and how you conduct your relationships. Things like using iMessages rather than make -- instead you would say I feel this way and here is what I need. Those are tough things for caregivers to be able to say. If we work we work on them, and pray this it it is part  of self-care. Also as part of the support system we need to be able to think about the times that we need to say no to others in the times that we need the strength to receive help. And that would be the ability to ask for help.
>> Good healthy boundaries is all about good self-care. It will keep us the more we work on it for and not blaming others and taking responsibility for our own feelings, thoughts, beliefs, and choices and our experiences and actions. It helps us in allowing others to take responsibility for themselves. They won't think that it is about other people's thoughts and feelings and behaviors. And here is why we want to concentrate on it because especially as caregivers there is or not, and other names like compassion fatigue, also secondary to trauma. Research shows that there are times of taking on the trauma of others because of the care and the intensity edge  make an intensity that we gave without having healthy boundaries. And then the trauma exposure response. It is essentially what changes in us essentially what changes in us as a result of the exposure . Other thoughts on self-care. We talked about reflecting back and reflecting with herself. Part of that is to think about writing your story. The impact of writing your story and reflecting on it helps you grow and provides personal insight for yourself. And then you can help and share your story. I have seen it so many times and how empowering it is for families to be able to connect with others by reading their stories because it is sharing that joy and pain and that all -- all those emotions that we have. It can make connections with the school, medical system, social network,system, social network, so  that people understand where you're at. 
>> I have one mom this is a great story. She worked on her and she probably presented it at several venues. The one that was most impactful was it empowered her enough to be able to really feel like she could get out and tear her community. So she started attending Bible study at her church. And there she felt safe enough and talked about the fact that she had written her story. And then she ride it. And then they said they should -- she told the story in front of the congregation. Password this congregation grew to not just the church but also the community so where her home have been demolished and they have built a new home. This community and the church built a new home for her they are about ready to move and and it's all built to be accessible for her son. To live in and thrive and have a better quality of life. And who knew that the this is something that could happen. She is humbled as she could possibly beard she is trying really hard to accept it with joy. And she also went on to explain when she is working with them the electricians and the builders and the cement workers as she is there and they are asking questions they are telling her stories that she said you would not believe the number of stories. She is about to write another story. Stay tuned I will tell you how that goes. 
>> The other thing that you can see that she has also practice in the result of sharing her Tory and reaching out to others. That continues because she has become highly active and our family activities and opportunities that we have in Arkansas for families. It has been a blessing to everybody. 
>> Other thoughts on self-care. To be able to spend time searching for the think that you are grateful for. You have probably already done that. To be reminded of it especially during those times where you do not know where the next shoe will drop thing -- think about the things that you're grateful for and things you can celebrate. It does our body and brain so good to think of what the gratefulness is and it helps us look back and say I am resending -- I am receiving meeting a purpose out of my life. And who knows what good things may come out of it. At the end of the PowerPoint a kind of insightful test to do. It is a self compassion test and then it tells you what your rating score is and what you can work on. All of it is self-care. The other thought in his the practice of being mindful of what you are doing and how to be present in the moment. And simply take a couple of minutes out for yourself. So you can breathe. The mindfulness is defined as an awareness that results from purposely paying attention to sensation, but, -- sensations, thoughts, and the present moment. While it is important to suspend judgment, try to suspend that judgment. 
>> There have been proven results of benefits and having some sort of mindfulness practice that you might have in your life. They did a study of mindfulness training and it resulted in significant reduction it decrease stress and anxiety and blood pressure depression and pain. And it increased immune systems, relaxation response and the rate at which we can go down into that normal range of the graph that I talked about with you about fight and flight. It also helped with executive functioning and ability to organize and the ability to sustain attention. There are very useful reasons for why we would want to try to practice with hiswould want to try to practice with his  -- practice mindfulness. 
>> They have also found some research because of the neural plasticity of our brain that it will change based on the response of the experience. If you think about you as a parent and leading your family and wanting to be successful and making change like we talked about for that high quality of life that we want think about this idea of being president -- being present and mindfulness. Attention regulation, body awareness, emotion regulation and changes in perspective on self.
>> We have if you don't take anything away this is a good strategy because a lot of people want to say what should I do today or tomorrow this would be at. It is an informal mindful practice. It is referred to a stop. Through you essentially want to stop and take three mindful brass and observe what the sensations are and what those feelings are and then you want to proceed to what ever it is that you are doing. Inever it is that you are doing. In  stop and positioning yourself you want to position yourself and this is not mandatory but if you are sitting if you want position yourself and this is not mandatory but if you are sitting if you want  to make sure that you or your legs are crossed and you are in a relaxed position. So you really can feel the blood flow and when you breathe it is important when you it is important when you take these bras  that view three mindful brass you want to when you inhale feel your lungs  mixed fill your lungs all the way up and then exhale all the way down to diaphragm take a big deep breath feel how that goes all the way up to your lungs and when you exhale exhale out even to the point of pushing your stomach out a little bit. It might feel a little awkward at first. The more you practice it the better off you will be. And while you are taking those breasts and turned around and observe and just link about what that feels like and how relaxed your head is on your shoulders and your arms are [indiscernible]. At the point where you might be a little bit judgmental or critical, a good friend of mine said think about escorting those thoughts from your brain and you will be fine. So the more you practice this the more you will or will become a habit. There are times when people have observed that they do it before they talk in the meeting, before the presentation, you initially want to be intentional about it and makemake  this a daily habit. And might be before you wake up in the morning and it might be before you go to sleep. MIP while you are right there taking care of your child because what also will do is make you be in the moment and what a great thing to think about just the moment that you are and rather than yesterday or tomorrow or the next hour. 
>> I also do it when I wake up in the morning and I cannot sleep. I know it helps relax me and maybe I am going back to sleep a little bit faster. Being present and being in the moment and practicing -- and practicing this mindfulness really helps your ability to be a calm. Your ability to be calm helps you with -- and it is a powerful intervention with your child and those around you. If you are into with yourself, you can be in tune with your childcan be in tune with your child . If you are into with your child, you are supporting brain development in a very real way. You are teaching self-regulation. You are decreasing family anxiety and fear. Before I forget there are also a few apps that you can take a look at in the resources. You can just bring up column for example and it will come up. I think another one is called stop to help guide you if you need that guidance. In closing, I want to reiterate that we need to be kind to ourselves. We need to be present we need to stop and breathe we need to attend our own worthiness love and belonging that is so important to all of us. We need to practice making connections. In [indiscernible] rising strong she talks about being engaged. Ask questions are we paying attention, are we thinking through our choices are weak curious and willing to ask questions? Are we open to learning and Moses -- and most importantly are we willing to willing to be wrong?  There are fueled rules of engagement for being courageous.being courageous.  I have thanked you for being courageous and participating in this webinar and doing what you do on a daily basis as a parent. I just wanted to share some of these rules of engagement that is all about the definition of courageous which is trying. Just try. Whatever you need that you need to do for yourself and to make make change for your family. Trying  is the best thing that you can do. Falling down is okay because research always says when you fall down you will rise and you are stronger person because of it. 
>> And the rules of engagement know that the journey belongs to no belongs to no one but you, however, no one is successful at doing it  alone. Is also important that we are wired for story. Also creativity embeds knowledge so that it can become prey this. -- So can become practice. Want to ask yourself  make you want to take your -- you want to ask yourself how do I do this and change what I am doing? Also comparative suffering is a function of fear and believing you are not enough. I think that needs to go on my bathroom mirror. Courage is contagious to everyone and the last one, is from Liz Gilbert and she said race will take you places hustling can't. And every person there is a balance and a need for spirituality. I don't mean necessarily going to church or having a denomination that is more important than any other I am talking about as a person we are spiritual beings and to be able I am talking about as a person we are spiritual beings and to be able  to believe in a higher being to take care of some of the things in life is grace.is grace. We cannot do it alone.  I thought that was a thought to quote. 
>> As I said there are lots of resources and referenceslots of resources and references  I have them available in the PowerPoint I also have contact information. There may be strong emotions that have been elicited from this hour that we have been together and the information that I have shared. I welcome you to call me or to seek assistance expressing your emotions is a healthy thing. And again, it is something that we definitely want to help you with. Or you can call make into and we can get you to the right resources. That is about it. I know we will have questions. In my efforts to practice gratefulness, tonight I want to thank you as participants and again the courageous people that you are. Thank you Magan and NCDB. And my immediate family. Without a doubt, I think my older sister and my  niece Sarah. From here I think we can take questions if anybody has anythink we can take questions if anybody has any . We can kind of go from there. 
>> Thank you so much. This is Megan Cote speaking. That was wonderful information. Rita has a question  that said will the PowerPoint be sent out to attendees? Rita, after the webinar and archive of the webinar recording as well is the PowerPoint will be posted on the charge syndrome website. And I will also be sending it to the folks that [indiscernible] as family engagement individuals. So you can find it either way. Kim says thank you for sharing your strategies. Ladies and gentlemen that are on the call tonight, if you want to ask a question live from Jana, you can press*six where you can type your question into the chat pod and we can get an answer that way. 
>> Katrina says thank you Jana. You are welcome.
>> I see people typing. I am so excited because I go tomorrow and I will meet up with my sister and I get to hang out with my mom too. Life is good. That will be great. Michelle said she loved this presentation, thank you so much, Jana. I want to let all the participants know at the charge conference that is coming up this summer there will be [indiscernible] around self-care and the families. We hope you will consider coming and doing a deeper dive into some of this information. I feel like someone [indiscernible] for several years now, this is the topic that is finally now liberated to be discussed and moving forward with the support that you are able to give your children. I am really pleased that Jana is here to talk to you guys and get you thinking about feeling and empowered to acknowledge your own needs and your own needs and to take good care of yourself so  you can be more available for the individual and your family.
>> Victoria is typing something. Thank you for making a quiz for us to take. Kindly access the quiz? There was a link in the PowerPoint. You can go to it. It is still on there. I'm getting to it. There this. There is the compassion test. So if you go to solve can passion.org Kristin said it is a gray website with -- Kristin said that is a great website. There is the test and that is the exact link to it. It is kind of interesting to be able to start from somewhere and it also validates that we all need to be a little nicer to ourselves. There is a question from Jeanette that says hello, how can I stop thinking about what is going to happen to my son when I am not alive?
>> I wish there was a magic wand. Part of it has to do with slowing down a little bit. You need to put yourself at rest just like we talked about in order to be able to to do things that are little bit more productive and might help you. The other thing I want to emphasize is making those connections with the social work -- with the social network because I can come up with thoughts and ideas and support and things that you had no idea. It obviously creates a lot of anxiety for you, you can start slow if it is hard for you to discuss it. The person that is in your and her circle you could start there. 
>> There are concrete things that you can talk to in terms of guardianship and all that kind of stuff. I think you are thinking first how do I quit thinking about it and calming yourself and then being able to write it down and reach out for those that love you. And then Victoria says thank you. I feel like many times I've become emotionally hard and not very sensitive anymore. Your talk has been helpful. I think this will help. And then Rita said Jeanette, you are not alone. I think and worry about And then Rita said Jeanette, you are not alone. I think and worry about  my sons future without my husband and I as well. I think that is something that you all share in that way of thinking. If there aren't any other questions, what I he will do is you will see a link in the lower right-hand corner of the chat pod to the survey. We would really appreciate you completing that. It helps inform us of about future topics for webinars.
>> It will also help Jana as she continues to mentor other families fine-tuning her presentation and elements that she may well to consider adding to make sure to do that we can do the best job hopping parents with self-care. If you could take time to fill that out, we would really appreciate that. Rita said it cannot be found. Tomorrow there will be an email coming to you for those of you who have attended, we will give it a go tomorrow. Thank you for trying. Just look for it tomorrow in your email. I would like to think Jana for speaking with us tonight. Her expertise is beneficial time powering us and practicing self-care. I also would like to thank Robin for -- would also like to thank Robin for him NCDB. We hope  that you all join us for our next webinar on Wednesday February 13th called laying the foundation for communication exchange and critical points of understanding. It will be given by Doctor Susan [indiscernible]. One last thank you to Jana and all of you attending. We hope you have a wonderful remainder of your evening. We thank you for supporting the CHARGE syndrome  program. Have a great night. Bye, thank you again. 
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