TRANSCRIPT - TSBVI Coffee Hour: CHARGE Syndrome: The Puzzle, The Practicals, and The Possibilities Ð 3/28/22 >>Djenne-amal: Yeah, so I would just like to invite everyone to have chat in the -- put anything in the chat. I'd love for this to be a conversation. I know I can't see your faces. You can see me and the presentation but please feel free to chat. Kaycee is going to let me know if there are any questions but I really do want this to be a great conversation between us. And so we're going to talk about CHARGE syndrome. I entitled today the puzzle, the practical, and the possibilities. And I'm just going to talk a little bit about our experience as a family of a child with CHARGE, or a young man with CHARGE syndrome, as well as the work that I have done over the last several years with young people who are Deafblind, Deaf, Deaf plus, hard of hearing, and just the wonderful kids and young people that CHARGE is. And so I'm going to do that through stories as well as talk about our own family experiences. Okay. So speaking of family, this is my family. This is who I am. Kind of my table here. I've been married 30 years. We just celebrated our 30th anniversary and we have three young adult children. As I was preparing this I said, wow, I really have three young adult children. My oldest, which is right next to me, is Amani and she lives in Austin and she will be attending public health graduate school focusing on maternal and child health. She has four places to choose from so I can't say where I think she's going to go or she won't appreciate that. Then in the middle is Malik. Malik is 26 years old and he has CHARGE syndrome. This was his graduation from high school at the eastern North Carolina school for the Deaf. And then my youngest child, she's 21, and she is a student at UNC Chapel Hill in North Carolina and she will be graduating next month and then going on to get her degree in audiology. And so I am -- and then my husband, of course, I can't forget him. My husband of 30 years, Michael Morris. He's here with me in Dallas, Texas. We are empty nesters but we have really dedicated our lives to support and serve families of children with Deaf, hard of hearing, other special or extra needs. I have been a family specialist with several Deafblind Projects. I'm a diversity, equity, and inclusion consultant. I am very proud to be the hands and voice of head quarter board president and I'm at LEND UNC. It is a group within UNC learning and education with neurodevelopmental abilities where we train audiologists and all working with I remember when I was a Deafblind family specialist at Perkins School for the Blind, one of our other family specialists. She gave us this wonderful plaque that says we are PHEs. If you know anything like families with us with CHARGE, we have a lot of medical issues and we're going to talk about that today but she said that we are parents having experience. And so that's actually one of the things that I am most proud of is being a parent that has experience, as well as being a professional. So I really am thankful that I have a unique opportunity to speak from being a parent of -- parent of three children, a spouse, but also a professional in the field for the last almost 30 years, even before Malik was born. Okay. So we're going to talk today about with just some of the definitions and diagnoses of CHARGE. Again, I am a parent. I'm not -- I don't have my medical degree. There are a lot of questions that I answer. Sometimes I do feel like I have my medical degree because as a mother of someone with such complex needs you kind of have to be the jack of all trades. All right. I'm going to -- I wanted to show everyone the CHARGE syndrome -- I don't know if it's going to -- page. Let's see... there we go. Okay. So this is the CHARGE syndrome page and I think this is so, so important. I've been involved with the CHARGE syndrome foundation for many years and it's really kind of the clearinghouse for everything CHARGE. And, you know, I've really seen the organization grow. When Malik was diagnosed with CHARGE syndrome -- I'll talk a little bit about that in a few minutes. It was -- he was 3 years old and I don't even think we had a CHARGE syndrome foundation at that point. And so it was just so wonderful to see how they have grown. There's been so many medical and research advancements, but just the support for families for the CHARGE syndrome. So I did link that. You can go on. It's amazing and they really do a wonderful job of keeping it current. Okay. So CHARGE syndrome is a puzzle and I put the puzzle here and I wish I could have found something that just had a missing piece of the puzzle because CHARGE syndrome, you know, when people ask me, well, what does your son have? And I say CHARGE syndrome, first of all many people don't know what CHARGE syndrome is, even physicians. You know, it's such a rare syndrome. If you say Down syndrome or autism people kind of, okay, that makes a little sense. But CHARGE syndrome is a puzzle and you'll see it's a medical puzzle, it's an educational puzzle. It has so many pieces to put together that make up the whole. And that's one thing that as a parent, as well as a professional, I want you to think about as we're going through today and as you're working with young people that have CHARGE syndrome, that it's not a one-stop shop. It is a puzzle. Sometimes you have to find the missing piece. As many of my friends and colleagues who have children or work with children with CHARGE, we always say there's always a missing piece. As soon as you feel like you put it together there's always something either -- not even missing but there's always a different piece of the puzzle. And so I'm going to talk a little bit about that as I introduce Malik. With CHARGE syndrome, there are always co-occurring conditions and that's what makes CHARGE syndrome a challenge at times because you may have the hearing, the vision piece, the developmental. There's so many things that go into that we have to look at as families as well as professionals, physicians, therapists because one always affects another and so we can't look at our children as silos, we have to look at them as the whole piece. Yeah, CHARGE syndrome is so unique. You've seen one kid with CHARGE syndrome, you've seen a thousand. I remember my first CHARGE conference. Let's see, Malik was born in 1996 so maybe this was '98 or 2000 I was in L.A. for the CHARGE conference and I just remember sitting back -- I was in the -- not the lunchroom, the cafeteria there, the restaurant. And I was watching all of these children with CHARGE go by and this really was the first time for me as a parent that I had seen so many people with CHARGE in a room. Usually, you know, Malik was the only one. We were the only one. Or maybe one or two of his classmates had CHARGE syndrome. But to see so many people, it blew me away. In a couple of ways. The first way is, wow, Malik -- we have a community. And then I remember, you know, some of you will know that you've got the kind of drunken sailor walk that our kids can walk with, and so I saw all of that. I saw kids doing so many different things, signing, using different modes of communication. But the one thing that was so wonderful for me, right next to my table was a table of young adults with CHARGE syndrome. And they had their technology out and they were signing, some were speaking. Some were just hanging out and that, I think for the first time for me gave me hope. Malik was I think about three at that point. It gave me hope that, wow, there's a future. He can be amongst, you know, these young people one day. And I think that's one of the things that is so important for us as family members is to have that hope. And it's important for professionals to instill that hope. When you have a child with CHARGE syndrome, so many times you're dealing with the medical aspects and you're dealing with so many pieces of the puzzle. Medically, educationally, with the family, et cetera and a lot of times we just don't have time to or have the opportunity or are granted permission to just enjoy the child that we have. 26 years later I could say that these young people with CHARGE are the funniest and they're the silliest and they're the most challenging and they are just amazing human beings. You can see the similarities between them but, again, there are so, so many differences but being in a room full of CHARGE young folks, it's hysterical. That's the only way I can say it. I'm really proud to be a part of the CHARGE world. Let's talk a little bit about kind of the practicals. It's weaving it together. It's weaving what all of the things, the pieces of the puzzle that, you know, it's important. So what are we weaving together? We have the child who has CHARGE syndrome and, again, like I said, they have so many aspects of them. You know, there's the family piece that it's important to look at. Malik was born into a family with one sibling, who was 13 months older than him, and then we ended up having another. So he's the middle child of two girls. We also have my mother-in-law next door and we have my family and so it really affected our family in a very unique way. It was -- he was the first child born with special needs in the family, with so many special needs and so we were in the hospital constantly. He spent probably the first six months to a year -- six months in the hospital and then the first year just in and out. We lived five minutes from the hospital in Boston purposely and I could get to the emergency room in about three. Growing up with CHARGE also affects the partners, our partnerships, whether it's a spouse or whoever the caregivers are. And that is very, very unique and that's something that our family has really -- has really wanted to be a beacon of light and honesty on what it is like in a marriage. How that affects us. You know, my husband Michael talks about having a son, his only son and in a way in the beginning it's kind of like the death of a dream because he's a sports fan and he wanted to take Malik and throw a ball and take him to Fenway Park and do all the things that he grew up doing and he had to adjust that. The siblings. The siblings are very important, I'll talk about that in a minute. Us as individuals. We can sometimes forget in all of -- as parents being so responsible and having to be up on the medication and make sure the child's okay and their feeding tube is clear, all of these things. But sometimes we can put ourselves aside as individuals. The healthcare system, whether it's the medical system, we know where every hospital is. In fact, when we moved down to North Carolina about 18 years ago, again, we moved right about five minutes from a hospital because we needed to know that if Malik was in crisis, when Malik does go into health crisis, medical crisis, he needs to get to the hospital very, very quickly. It was also navigating relationships with doctors, both in Boston and North Carolina in that as a doctor, has their medical degree, they have their area of expertise. I, as a parent, taking care of Malik day in and day out, also have my expertise and so kind of having that collaboration is extremely, extremely important. And then of course education. You know, that's the thing that we -- as our child grows, gets older, goes into -- you have early intervention and the secondary ed and post secondary ed. That's huge. You know, how do you educate a child with CHARGE syndrome? When Malik was younger -- when he was first born he went to Perkins School for the Blind that had a Deafblind program. And it was fantastic. Actually, he was diagnosed with CHARGE while he was there. One of the psychologists -- I had never even heard of CHARGE syndrome and came and said, Djenne, do you know anything about CHARGE? I think this is what Malik has. Remember, we were just trying to keep him alive. And so to put a name to something meant nothing but when we finally got a diagnosis at 3 with CHARGE, then we were able to kind of figure out how best to help Malik educationally. The family piece is so, so important. Family and culture. Every family has a culture. Every culture has a family and that's -- you can't separate that out. Our family culture was one where we kept our family close. Grandparents, aunts, uncles. We grew up in a large family unit where we were in Boston, because Michael is the baby of 11. And so there were always kids around. There was always somebody to pick Malik up and be supportive. We also had a very strong church culture. My husband and I were in the ministry at the time. But one thing that was strong and supportive -- something a parent may not tell you is no one knew what to do. No one knew what to say to us. And in our western culture we hate pain. We don't like for others to suffer and so there was so many kind of comments of, oh, it could be worse or, oh, it will get better. You know, and my husband was a better person for me. For me it was but you don't know what I'm dealing with on a day-to-day basis. And so the professionals that worked with our family, the early intervention teachers, the social workers, the OT, speech. What else did we have? All of the therapists. Five days a week, every day we had a therapist coming in to do something with Malik. In fact, they became our family and they became kind of a subculture for us because they were the only ones where we couldn't go out with Malik. They were the only ones that really understood what we were going through, that really could give words to what we were saying. I could ask questions too so the family became extended. It was the providers, the doctors, and the educators that really were our family. I'll give you a wonderful story of Malik's first early intervention teacher, Kathi Carpenter, she showed up one day at our house and she had this bag. I tell you, I always called her Mary Poppins because it was this carpenter bag and she came in and she had lights and all kinds of things on to see what Malik would respond to. Now, mind you, he was about this big and he just would stay like this and just kind of lay on the floor and look at the ceiling. And at that point we didn't know he was Deaf. We knew that he had some vision -- he was blind in one eye. And I remember Kathi getting on the floor and looking up and saying, okay, Malik. This is the world from your point of view. And she became such an integral part of our development at that point. And it was wonderful. She had two children who were -- daughters who were Deaf and Deafblind as well. But we relied heavily on the professionals in our life. Our friends were our family but very often we couldn't go out because Malik was sick or if someone was sick in the house, it wasn't like we had a lot of mobility, especially in the early years. And so I always -- I've done a lot of training of professionals, especially early intervention teachers and I always say you are the family's glue. You're their lifeline, especially in the beginning because there's a lot of confusion, a lot of grief, a lot of fear and it's so important, the roles that someone has, even though you might be a professional, you become family. And I remember we went to visit Kathi a couple of years ago -- Malik's up walking around and she had us over to dinner and she had a station for Malik. She had a chair with handles, she calls them borders because you always have to have a border for Malik. She had the whole place setting and this was almost 20 years later. We really cherished those times that we had with the professionals. It's a family affair, it really, really is. The siblings are the first friends, the first play mates. This is a picture of Malik when he was much younger and then his siblings. I did put a picture in when he was in the hospital. Because Malik was in the hospital so much, the hospital became a playground for my girls and so whenever he got sick, they would -- one would go on one side and one would go on the other and, you know, this is, you know, the nurses, the doctors all understood that Malik needed his sisters there to support him. One of the things my girls have shared -- I remember we went out to Utah, Emily, I saw that you were on. Our whole family -- Malik didn't go -- went out to Utah for the Utah Deafblind program for the family weekend and it was a wonderful time. I shared, my husband shared. But when the girls got up to share, that was the first time that I had heard them tell their story. And I tell you, it was powerful. Powerful. Amani talked about how Malik is her best friend -- they are 13 months. Malik is younger than Amani. She became the caregiver -- and that's her personality as well. Just taking care of me. Taking care of Malik and making sure everyone is okay. You know how you always try to tell even to this day at 27. You don't have to worry about anyone. I can be the mom. But she took on that role and she also shared about how the therapist and Malik's teachers especially at Perkins and then at the School for the Deaf in North Carolina really pulled her in and taught her and gave her a safe and brave space to talk about the things that were frightening. We did spend a lot of time trying to keep Malik alive and we were very honest with the children that this is a hard time and Malik may not make it or he's doing great. Our family culture is just very open. And it was interesting to hear Zachia who is six years younger, to tell her story about Malik and how she resented if I asked her to be a caretaker. She just wanted a brother to play with but once Amani left home, she really became Malik's person. So it was having one child get out of the way and the other one saying I can do Malik. I can have -- I can take care of him when it's my choice. I'm going to tell you a story, Malik's story. So this is Malik Lamar, the king that we are thankful for who is destined to do great things. He has a very long name for a young man. Malik was born with -- he has coloboma, so that's the C in CHARGE. Coloboma is a retinal detachment. He has vision out of his right eye, his functional vision and then light perception in his left eye. He is considered legally blind but let me tell you, this kid can get in more trouble. He sees I don't even see. He has really learned to use his vision very, very well. The H in CHARGE is heart. So he was born with all four chambers of his heart were not closed and so at six months -- I'm sorry, six weeks old he had to have central arterial ventricle canal repair. So they basically took I guess a membrane from the pericardium and created four chambers for Malik. And he still has some mitral valve regurgitation but actually last year ruled out that his heart is doing well, so he kind of got exited from having his doctor, who was a wonderful heart doctor, cardiologist. The A, sometimes the nose, there's blockage of the nose. He didn't have any of that. And the CHARGE foundation has changed the retardation is cognitive development. They say it differently so if you get a chance to go on the link. But he does have developmental delays. Three to six I say developmentally. But there's a plus in there because seeing Malik grow up, there are times he's just a teenager. I joke. I say he just is a punk sometimes and he gets into things and he gets on my nerves, just like any other young teenage young man. I remember the day he told me no or he closed his eyes, you know, and I was like, where did he learn that? When I was signing to him, he just closed his eyes and turned around. I was like, oh, okay. So I'm giving -- you are more developed than I really thought. I just want to say with this piece, I was always taught let the child lead them and Malik will lead you, our kids will lead us. We say this as a developmental but I tell you what, these are some of the brightest young people that I have come across. They can figure out, they can problem solve. It's just amazing. The G in CHARGE is genital abnormality. Malik had undescended testicles that were fixed when he was about a year. And theE is ear abnormalities. He is profoundly Deaf and he uses American Sign Language to communicate but it's more total communication because he'll use picture cards, gestures. Malik can get what he wants when he wants it. And then there's the other things that he was born with, tracheoesophageal fistula, that's what started this whole trip to the hospital when he was two days old. So when he was born, the nurse noticed that his esophagus stopped here and then the rest of his esophagus was connected to his windpipe and so that kind of set off the alarms that something is going on and we were sent over to children's hospital and at that point the first -- yeah, he was two days old. He had TEF surgery as well as -- and then we realized he had the colobomas, he had a stomach tube put in, G-tube, we call it, gastronomy tube. He couldn't drink and breathe and swallow at the same time. And so, you know, we had to give him special formula and everything. And so some of the things that he has continued to have -- he has the G-tube still. He has developed asthma, migraines, tics, we call them CHARGE and a lot of them do like this and we call them the CHARGisms. And then, again, there are a whole list of CHARGisms that are, you know, the attention span. Sometimes you'll see the kids hanging upside down. I had one mom, I did a home visit -- I worked in North Carolina for a group that supported families when the child is Deaf or hard of hearing. And so I knew the child was diagnosed with CHARGE. She said, why are they hanging upside down all the time? I said welcome to the world of CHARGE. And sometimes that is part of them regulating themselves. All right. Kaycee, are there any questions in the chat? I'm going to take a breather. >>Kaycee: No questions at this time. >>Djenne-amal: And what does our time look like? >>Kaycee: It is 3:30. >>Djenne-amal: Okay. Doing great. All right. So this is really where I want to talk about the possibilities. You know, with my girls I always thought what are they going to do when they grow up? What are they going to be when they graduate high school? In our family culture, you know, both my husband and I, we pushed for our -- we were pushed to go to college, encouraged to go to college and so we did the same for the girls. But then there was Malik. We just -- the possibilities we just didn't know. We had no idea. I always say that I spent so much time trying to make sure that Malik stayed alive that to think of Malik having a life other than all the hospitals all the time or all the surgeries or all the therapies, I couldn't see that possibility until he was probably about 12 or so, when we moved to North Carolina. And the reason we moved to North Carolina was because the Boston New England weathers were literally killing him. He would be sick from Halloween to Easter and that's how I knew. It wasn't even the months. It was Halloween until Easter that he was in and out of the hospital with RSV or pneumonia, different other things. And so the doctor said he really, to save his life, can you move to a warmer climate. And so we ended up moving to North Carolina to save his life. And that's when I started to see the possibilities because Malik started getting healthier. He didn't have as much hospitalizations, didn't have as many sicknesses. And so he, Malik, was able to start to catch up or catch up for him on his learning, his education. Just being a little boy. Playing, doing different things because the atmosphere provided for that and he wasn't as sick. And so that's why I titled this the possibilities. Again, like I said, parents want to know that there is hope. Parents want to know what's going to happen when. I know that we can't say what's going to happen when but I think it's so important that we talk about what is possible. And in our family we were so blessed to have professionals that told us what is possible. You know, that gave us that hope but that also told us the hard thing. I'm from New York. I had professionals kick my butt and say, okay, Djenne, Malik's growing up. He's 16. That's when I started thinking what are the possibilities, what's next and what do we need to do as a family to make sure that Malik can live his best life. And so I just wanted to share these. Living their best life. I'm going to share about Jacob in a minute. These are two friends. Jacob has CHARGE syndrome and Malik of course has CHARGE syndrome. This was at a Deafblind -- in North Carolina we had Deafblind family weekends for the Deafblind Project. These are two young men that I watched grow up that, you know, when they were younger we all were trying to figure out what were the possibilities. But then we were able to see, you know, how they have grown up. One of the things that we did that is so, so important is a person centered plan. We did it when we first moved to North Carolina and then we did it about ten years -- well, no. Malik was 10 when we moved to North Carolina so around 18, 19 we did it again. And so this is just an example of a person centered plan, trying to figure out who is Malik, what he likes, and what are some of the possibilities for him after he graduates from the School for the Deaf. You know, these are the fears that we had and I think this is important to talk about and to give a space for families to talk about. My biggest fear as a parent is preparing for a time that I thought Malik would never have, and that was the future. I never saw him as having a future. We thought if he was diagnosed with pneumonia or one choke away from death and so for me I didn't see a future until I saw a future. And then when I saw the future, the future scared me because, you know, what did I want for him? What can he do? He doesn't have the same opportunities that my girls have but he does have opportunities. So I need to figure out what those opportunities are. And then we talked about the dreams. You know, we wanted Malik to live independently. My husband, now that we are empty nesters, he -- I remember back when he said, oh, yeah, Malik's going to end up being a boarder. He's going to board at the school. This was when he was still at Perkins. I said he's not going to board. But Michael saw the importance of Malik being independent and living independently, as all parents we want them to be a productive member. We want them to communicate, have friendships and space and that's why I have the picture of Jacob there because Malik and Jacob grew up as friends. They would even get in trouble together. I'll tell you a funny story. We were at the embassy suites and we were all sitting at the table eating and what we did as parents is we would let one family eat. So we would watch the kids and let them eat in peace and then, you know, we would take turns. And so we kind of looked and said, whoa, where's Jacob and who was supposed to be watching Jacob? That was me. Jacob, we looked up and he was up and down in the elevator. And so we had to run and get Jacob. And the next meal we lost Malik and that was the other family. Where was Malik? Up and down the elevator. And so the two of them really were -- got into trouble together quite a bit. But we want to make sure that we have the dreams. We had an action plan. You can see that later. But, you know, what the action was, who was responsible, and the timeline so that when Malik graduated at 22 from the eastern North Carolina School for the Deaf, we had already put in place and found an amazing group home on -- you see Darren there that has a certainty family fun, he is a person in Fayetteville, North Carolina that has 11 group homes for young people with intellectual disabilities and he opened up with our support and support of other professionals, a group home for young people who had communication differences. And so we went and we kind of made it Deafblind friendly and walked through the house and there are some things that had to get done and Malik this year, this Easter in fact, will be celebrating his fourth year living in his own home. He was the first one there. They go to a day program. He also, before COVID, had different jobs, working at a church, feeding the -- making lunches for folks that are experiencing homelessness. He would clean up at the barbershop. He did so many things and part of that was doing the person centered plan and how do we as a family give him an opportunity to experience life as we know it. He has learned to walk a dog. He dresses himself. We wanted him to be as independent as Malik could be, not as independent as the girls or not as independent as, you know, another classmate, but as independent as Malik can be. And so that's so, so important. This was the day that he moved into his house. I mean, you could see his face. He was so excited to go to his own house. Of course, I was a little insulted but what 22-year-old guy, they want the same independence that the girls had and so he was so happy to move into his own home and has done well. And this is Jacob. Jacob, like I said, grew up with Malik. Jacob loved creative outlets. The two of them would take -- you can see them on the pictures -- and create things. One of the things that Jacob's family wanted him to do is be productive. You know, they just didn't want, okay the manipulatives went nothing but what can you make into a purpose? And so Jacob, with the help of -- he's still living at home -- but with the help of his cap workers there, he goes out into the community, he makes his own crafts, he lives an amazing life and has a wonderful, wonderful sense of humor. And I was able to see Jacob at the CHARGE conference here in Dallas a couple of years ago and it's just amazing to see how they have grown up but with, you know, it's the journey. It's the supporting of the family. It's the getting the medical and educational support that will allow them to live their best life and to have a purpose. I love this quote. We all have that possibility, that potential and the promise of seeing beyond the seeming. And the seeming for our young people is sometimes just right here in front of their face or in front of our faces. But I think it's so important that we as professionals and as parents see beyond that. You know, who are the Jacobs and Maliks and what can they do? And, again, letting them lead. We had Malik do several jobs for a couple of summers to see what he liked. And to see where he liked to work or did some things that he liked, different foods and everything. It's intentional but it's also organic with our young people with CHARGE. We're going to take some time for some reflections and questions. I'm going to stop sharing and then I also put just some resources there. I am -- please feel free to contact me, you know, by e-mail or my website if you have families that would love to talk to someone. I'm happy to do so. We have a couple of minutes for questions. >>Kaycee: Yes, we have a question for you. Kimberly asked if your son utilizes any tactile signs or protactile signs? >>Djenne-amal: He does not. He uses just his ASL. He was very tactilely defensive and so we really didn't use any tactile signs with him. >>Kaycee: If we have other questions for Djenne, put those in the chat. You mentioned a couple of times the CHARGE syndrome website. What types of things can people find on that website? >>Djenne-amal: Oh, my goodness. You can find -- it talks about the medical piece of CHARGE, the educational links to different family organizations within CHARGE, like the Texas Chargers. It's a wealth of knowledge. It talks about the CDH gene that was found, the research. I went on it the other day and I hadn't been on for a while and I was just so proud of how it's expanded. >>Kaycee: That's so awesome. >>Djenne-amal: Take some sometime to go and look on there. >>Kaycee: Absolutely. That's where they get a lot of their resources. And then a question, have you found the resources, programs, et cetera in Texas to be comparable to those you experienced when Malik was younger? >>Djenne-amal: You know, that's a great question and I'm glad you asked that, Tommy. Malik is 26 now and we moved to Texas about six months ago and Malik ended up staying in North Carolina in his home because we didn't want to move him. So I have not been as -- because he is older I'm not as familiar with the Texas resources. I've been trying to get the supporting families. What you also have to remember when Malik was younger -- this was 26 years ago. The resources that the families have now were not available to Malik as well as the parents then versus now. For example, we were thinking about getting a cochlear implant for Malik when he was much younger but he ended up getting very ill and we couldn't do that. I have seen even the young people that are implanted now that have the cochlear implants be even younger than Malik could have at that point. And so, you know, and I think because of a lot of the research and medical and educational advancements, you know, it's been wonderful to watch and I think young people with CHARGE now do have many, many more options. And technology is fantastic. My goodness. >>Kaycee: How can teachers of the Deaf better support families, vision team, SPED teachers, evalteam, homebound services, et cetera? >>Djenne-amal: I think -- like I said earlier that to create a safe or brave space for families, especially in the early days that as teachers -- the whole team. You are the foundation, I believe for a family to ask the questions. To even ask the questions that are hard questions. I remember asking Kathi one day, it was coming upon Malik's birthday, March 4. And I was just grieving, grieving. You know, birthdays were hard. I mean, how do I celebrate this kid? Because I was looking at all of the things that were tough. And she said you don't have to. Or you can go -- it's funny. She stayed with us in-home for three years. Each year on his birthday was tough. She said what does Malik like? Malik liked balls at that point so what we did for his birthday is we went to a Toys 'R' Us and let him take every ball and throw it in the aisle. And he just laughed and carried on. I let the Toys 'R' Us people know so we wouldn't get arrested but that seems like a simple thing but as a parent, that's huge. That's huge just to be able to be that honest. It really -- and one of the things about like holidays, birthdays, you know, as professionals what you can help us navigate is how do we deal with that? How do I say to my mother-in-law that thinks Malik can hear? He can't hear. Or how do I go to someone's house when he's pulling everything down or we're stuck in the house as a family. You know, how do I bring people in the house, you know, just things like that. How do I navigate my world when our world can be so insular because we -- you know, there are limits. But also how do I expand my world. You know, we would take Malik -- we took Malik everywhere. You know, we still take him everywhere. He loves bottles so we know when we go in a store we have to be careful. So what kind of assistive technology does Malik use now? He actually doesn't. He is just starting to use -- that's not something he wanted to use. We tried everything and Malik is very stubborn so he -- but now that I'm gone he will use an iPhone. He'll use the tablet to, you know, we'll FaceTime each other to say hello and I'll sign to him and he'll sign back. It's not a whole lot, long conversation and when he's done, he closes it but he didn't really want to use -- which was very frustrating to us because we did have access to a lot of the technology but that's where I said, well, Malik's going to do what Malik wants to do. >>Kaycee: Sounds like you did a great job following his lead and knowing what he wanted to do. We did have people in the chat who wrote thank you for sharing all this information today and Amy is sharing she's having flash backs of her young man solo in the elevator. >>Djenne-amal: One of the things -- because this is a continuum. Our kids are living longer and there are so many opportunities. I think the point when they're born, when they just transition out of early intervention and also when they transition into adulthood. That is a key point. So to go back to the question about what can people do. Those are the times we need the most guidance because we're not sure quite what to do and so when Malik was 18, you know, we got guardianship of him but also we started putting into place -- well someone asked me what do you want Malik's life to look like? I don't know. Well, what do you want the girls' life to look like? Just like I shared on the slide. These are the things you have to intentionally put in place and make sure are happening to create the type of life that you believe that the young person would want. Especially transitioning after high school. >>Kaycee: Debra put in the chat thank you for your honesty and we can all say absolutely to that. This has been so wonderful. Many, many thank yous coming in. >>Djenne-amal: If I could comment about the community activities, someone wrote something. That is crucial, in my opinion, because for two reasons. And this is what I learned just kind of as a work in progress. The fact that we wanted Malik to be a part of his community but it's important that the community got to know Malik and so in fact I learned this lesson from one of the police when we lived in a small town. One of the policeman was -- we had just got to know him and he got to know Malik and he's the one that said to me, you need to let Malik come and get to know the firemen, the policemen, the ambulance drivers, the community. He knew everybody at Target and the grocery store there. That was important because Malik didn't know that if he put 25 boxes of Cheerios or Cheetos in the cart and walked out of the store, he didn't understand that was stealing. So the fact that someone would know he knew the checkout person that he could hand money to. But one of the jobs we had him do one summer is go to the fire station and the police station and wash their cars so that they would get to know him. So -- because he was a runner and so if there was a phone call that this handsome boy is running down by themselves in the grocery store that there wouldn't be an incident that they would know that this is Malik. And so they were enriched. I remember the officer -- I saw him at a summer fair and he said I have enjoyed working with Malik and getting to know him and, you know, they started a program where other young people with special healthcare needs or IDD would go there too so it became a whole community. >>Kaycee: That's so awesome. I think that's so wonderful and so important and I'm sure as a mom, gave you some peace of mind too that there were other people in the community looking out for him. >>Djenne-amal: Yes. And so when we moved him into his own house in the community he already knew how to act. He already was familiar with neighbors. Everybody in Fayetteville knows about Malik.