Life with a child or family member with disabilities can be challenging and complex. There are moments of isolation and uncertainty. An important element of navigating this difficult environment is establishing a strong support network for your loved one with disabilities. “Village building” is an intentional strategy to expand the web of support and resources available to assist in creating the best opportunity for your child or family member to thrive and experience their best life.
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For those of you who have… We’re recording now, we’re officially starting. For those of you who haven’t yet answered the poll, it’s great if you can, because we’re gonna do a few more of these polls during the session, and they’ll be a little bit more serious topics. My name is Marisa Howard-Karp, and I am part of the Exceptional Lives team. For accessibility purposes, I will let you know that I am a white woman in my forties. I have straight brown hair and I’m wearing a shirt with a black sweater over it. And you may occasionally see a black cat walk across my screen because this is how it goes when we all work from home. It is such a pleasure tonight to welcome you to the next webinar in our series for families of color in Baton Rouge, who are parenting children with disabilities. And tonight, we are lucky enough to have, as our speaker of Mr. Raymond Jetson, who I am sure some of you know, and probably came in for the express purpose of seeing him. And I know he will not disappoint. So, I’m just gonna do a couple of quick housekeeping things before I hand over the reigns. First of all, we have turned on live captions. So, if you would like to use the live captions, then you can just hit the button as it shows up here, and the transcript will appear on the side of the presentation, so you can follow along. It is not perfect. We’re still working with the automatic technology. So, if anything is missed, our apologies, and, in the next couple of weeks, we will make the webinar recording available with both English and Spanish captions and transcripts on our website. I think most folks at this point have figured out how to use the chat feature, but, just in case, this is what it looks like. And this is how you can switch so that you send your message to everyone. If you do have any technical problems, you can send a message to host and panelists and somebody else on our team will make sure that they will catch it and get back to you. If you have questions, you will see that there’s a Q&A box, and you can pop your questions right in there at any point during the presentation, if you’d like, you can check off that, you wanna have your question be anonymous, and that’s how it will show up. So, we welcome questions at any time. I got ahead of myself here. That’s what it looks like. So just a quick minute to talk about Exceptional Lives. Our whole purpose is supporting families, parenting children with disabilities. And we work with lots of educators and education administrators and community based providers as well, who are working with these families and with these children. And our goal here really is how do we make lives easier and better? And, most of our team, we are living it, just like many of you. And so a lot of our work comes from our own experience and our own understanding of what we’ve seen in our communities and with our own children, myself included. These are some of the different kinds of things that we offer. We have a resource directory that we have resources that you can search throughout the state of Louisiana, from everything, from, you know, mental health, to social groups and tutoring. We have general resources that you can read, that you can watch on video. We have a new podcast that I’ll talk about in just a second. We have a blog written from a family perspective, and we also run social media platforms where you can connect with other families. Our new podcast was just launched at the beginning of January, so, if you haven’t already heard it, you can take a look at it on our website and you can subscribe. We would love to know what you think since we’re still new. And we’ve got some opportunities for folks to get involved, so, if anybody is interested, we’d be happy to share more information with you about the family feedback team that we’re building. And we’re also looking for families who are interested in being interviewed and sharing their stories as a way of supporting other families, and talking about what your path has looked like. So this is where I get to introduce Mr. Raymond, who many of you may know as the President and CEO of MetroMorphosis, he’s an elder, he’s a former state legislator, he is the former CEO for the Louisiana Family Recovery Corps, and worked with the Louisiana Department of Health and Hospitals. So, he has done all sorts of great work, and it’s really clear that his heart is what leads him in all of this work. And of course, as he’s gonna talk about tonight, he’s also a dad. And we’ll hear more about that in a minute, but Mr. Raymond, thank you so much for joining us tonight.
Thank you so very much, and I truly appreciate the opportunity to be here. I want to share that. Please forgive the throat and the sound. It really flared up this morning. And so if you see me sipping hot tea, it’s to try to make it through the event, but I am so really thankful for the opportunity to be here. And so I will go ahead. I’d like to offer a physical description for anyone who’s joining us, who is not able to see me. I am a 66 year old African American male. I have gray hair and a closely cropped gray beard. I wear glasses and I have on a light blue shirt with a rather bright yellow bow tie with blue patterns in it. And so I am thankful to have this opportunity to share. I really want to give a sincere thanks and kudos to Exceptional Lives for creating this really important platform. I am thankful for those of you who are here to share, and it is my sincere prayer that there is something that I will say that will matter to you. And so I’d like to begin with the first slide, if I could. And so I am J’Erica Nicole Jetson’s dad. It is without question, the most important role that I’ve played, in relationship with other human beings, J’Erica Nicole, many years ago, is the little person in the middle of this picture. J’Erica was born and diagnosed with Cornelia de Lange syndrome, developmental delays. You can see deformities of the digit, lots of hair. J’Erica is now 31 years of age. She’s four foot one and weighs about 60 pounds. So, she’s still tiny. And this picture is my favorite picture of J’Erica, and here’s why; this picture was taken, near the end of a six week summer camp hosted at a church near a local YMCA. The program was co-sponsored by the way, the Y this congregation and others, and it was intended to be inclusive and invite and serve children with disabilities. This is my favorite picture in the world, because J’Erica is nearing the completion of a six week summer camp, where she had no professional support. There were no family members there with her during the day, and there was no support professional who was there with us. The four young ladies that you see around her kept J’Erica through this six week summer camp. And they got to the point where they would meet us in the parking lot, waiting for J’Erica, J’Erica would get out of the car, and where, in the first couple of days, she’d kinda hold hands and we’d walk across the parking lot, by the time we got to week two, J’Erica was struggling to get out of her car seat. And the moment her little feet hit the ground, she was gone across the parking lot to connect with these little girls, my child, who at this point had, what I believed to be, a death fear of stairs, going up or down, was brought into a building, and one of the young girls said, “J’Erica, let’s go”, and started running upstairs. And I watched my child slowly, but nevertheless, determinedly work her way up the stairs. This picture means the most to me because physically and on so many other levels, my daughter is surrounded by people who got to know her, cared about her and allowed her to be her best self. And that’s my hope for her, even at age 31, that there are people around her, who know her, who have some level of understanding of her and who are positioned to help her live her best life. Not to care for her, not to protect her, not to record keep her, but to, with intentionality, support her to live her best life. And that is my hope for any and all of you who join here today, who have family members, loved ones, children with disabilities. I want to help you to help them be their self and live their best life. And so I want to talk to you about this notion of building, how we go about building those things that are necessary. And the operative term there is building intentionally structuring, making something happen, not just leaving it to chance, but rather having a focus. And, what I will share with you are three important areas. But how do we build, how do we construct this ecosystem, recognizing that your family member does not live in a vacuum? Unfortunately, for so many of our family members with developmental disabilities, they live in isolation. How do we, with purpose with forethought, and with determination, go about the business of building an ecosystem where our family member is safe. My daughter does not communicate with words. Now that doesn’t mean she doesn’t communicate. You only have to be around her for a few minutes and ask her to do something that she doesn’t want to do to recognize that she can communicate really well, but it is not the typical communication modalities of most folks. And so, my daughter couldn’t come home and say, “daddy, somebody hurt me today.” And so I want my daughter to be safe. And I assume that you want your family member to be safe, but that’s not the end all be all. I want my daughter safe, but I also want her recognized. I want people to know who she is, to know how she shows up in life. I want people to understand how this diagnosis shows up in her life, but that it is not all of her life. And I want people who have the information, the knowledge and the skills to support my child in living her best life, helping her to thrive. Information, knowledge, and skills. And so the first area that I would say to you, that this building should happen, is in building people. This is probably my… This is up the list of my favorite photos of my daughter. Because in this picture, she is in Gulfport, at the beach living her best life. I think if she could talk at this moment, if you ask her about her daddy, she’d say “What daddy?”, because she is fully engrossed with where she is. But she is there because we went about the business of building people who could be around her to allow this level of freedom. And so who are the people that populate the ecosystem, where your family member will experience life and what is the information that they need? What is the knowledge that they need, and what are the skills that they need to have, in order to support your family member in living their best life. And so J’Erica is on this vacation at the beach with another family that her support staff happens to be very closely related to. And so when they went on their summer vacation, I was asked if J’Erica could go, the answer is absolutely yes, but let’s talk about the information, the knowledge and the skills that need to be present. So that she’s okay. And so, as you begin to think about the system, the ecosystem around your family member, what do family need? What do family members need to know? J’Erica has a 24 year old brother. She has a mom. She has grandparents. What do these people need to know? And so we get, for example, the Cornelia de Lange Foundation news magazine called ‘Outreach’. I did research and downloaded what is the seminal article on how people with Cornelia de Lange syndrome experience life? I have also been very thoughtful, very observant about how J’Erica manifests in life. And I have gone to family members, my mom, my mother-in-law when she lived, J’Erica’s aunts, uncles, I have gone to them and shared materials for them to read, talk to them about certain things, how J’Erica communicates, what you need to be observant of, what happens when she’s not happy, or when she’s in pain. How do you recognize? And so who are the members of your family who are likely to be in contact with your family member, who are family friends? You know, not everybody who is close to us is blood family. And so are there friends of the family who could conceivably play a supportive role in being there for your family member, are there neighbors? So, one of the characteristics of J’Erica Nicole’s syndrome is that she will wander off, well, it’s not really wandering off. She will intentionally decide to go somewhere else. And so should the neighbors be aware if, in some rare set of circumstances, my lovely daughter were to escape, and show up in their yard, what should they know? And how should they approach J’Erica? Who are the people, if your family member’s, in an educational setting, the service providers, you know, what do those folks in that system need to know about your loved one? And how do you intentionally share that information? What’s the one pager that you give, what are the five things that they need to know? And how do you work with these people to make certain that they can give their best effort in supporting your family member and who are those folks who don’t, those who act in ways that are not conducive to the best outcomes for your family member, or worse than that, those who, by their ignorance or their behavior, do and say things that are harmful to your family member. And so how do you build, if you are part of a faith community, what do the members of your faith community need to know? I served as a pastor of a congregation for 23 years, J’Erica came to church. I’ll share an interesting moment with you. J’Erica had a communications device around her waist, that her god sister’s voice was used. And, J’Erica was sitting in service one Sunday, and she loves music, and so she was enthusiastic as the choir was singing. And then her dad got up, and started to prepare his message. And there was this quiet moment in the church, and J’Erica pressed her communication device, and, very loudly, over the congregation, it said, “I am ready to leave.” Now, we allowed her to leave, because she’d certainly expressed her preference. But, if there’s a faith community, what do they need to know? People need to know that J’Erica’s not intentionally ignoring your norms and standards. This is just how she shows up. She doesn’t know that she’s not supposed to say something at this point in time. Are there social communities that you are a part of? And are there peers? So very often we think the apex, the epitome of, for people with disabilities is to be connected with traditionally developing people. Where is it written that the people who surround your family member with disabilities, can’t be another person with disabilities? And so, who are those peers that you need to support and build up to support your loved one? And then, and if your family member is involved in healthcare ways, such as my daughter, how do you make certain that the healthcare workers know who your daughter, your son, your brother, your sister, your family member is not simply as a patient, but as a person? J’Erica and I had a number of trips to the hospital recently. And I’ll talk about that near the end of my comments. But by the time we had gone to the same day surgery check-in three or four times, the people who were there knew that J’Erica was not going to tolerate a needle, not being awake. And so you couldn’t do the regular, you know, IV, blood draw, you couldn’t do all of those things with her. She wasn’t going to put a thermometer under her tongue, or sit still while you put one in her ear. And so what are the adjustments that need to be made? That was my job as her chief advocate. And that becomes your job in building people. In addition to building people, you need to be about the business of building places. And so, how do you pay attention to the spaces that your family member will frequent or should frequent? And what are the things that you need to do so that those spaces are equipped to receive? This is a picture of, excuse me, a second. This is a picture of J’Erica Nicole at a doctor’s office. If I were to tell you that she was really happy to be there, it would be a blatant lie, not her favorite place to be, but we spent time talking to the healthcare providers and saying to them, there are certain things that we need to do here in order for J’Erica to be at her most comfortable self so that she can be a willing patient. And so, for example, we don’t put J’Erica up on the exam table, unless there’s no other alternative, because there’s something about that crinkling paper and being up on that space, that elicits a different response from her. And so, in that building, people in the healthcare system, J’Erica’s primary care, J’Erica’s OB doc, those that she see most frequently, no, we don’t put J’Erica on the table. We examine her. She will come and stand near me. We will put her in a chair next to me, but how do you shape and build those spaces? What are those places where your loved one will frequent or would appreciate frequenting? School buildings, service settings, J’Erica went to a vocational day program, rather. How do we begin to make certain that the people in these settings understand who this person is, not what’s the diagnosis, not what’s the medication regimen, not all of… that’s important knowledge, but there’s other information that’s more important in terms of the life that your family member experiences. And it just doesn’t happen, dear friends, there must be an intentionality and a purposeness, a purposefulness about your efforts. Homes, you know, what other houses will your family member be frequenting, and what needs to be in place in that space? And so, for example, J’Erica would sometime frequent my mother’s home, sometimes, with such a length of time, that medication regimens would click in, well, how would we make certain to have a supply of medication on hand in that home so that J’Erica can enjoy herself for as long as she can and not have her life dictated by a medicine dosage regimen? How do you make certain that those things are in place? For a long time, there, J’Erica actually loved going to libraries. She loved looking at the pictures and the books and where there were places, where J’Erica loves to listen to music. She does not like anything on her head or near her face, but she will actually wear earphones or EarPods if there’s good music playing. And so we communicated with the people at the library. This is this little person who’s going to show up. Sometimes she may not pay attention to your “quiet, please” signs. And whoever’s with her is going to move her from that space, calm her down and bring her back. But you need to know that there is a likelihood that from time to time, she’s not going to be quiet. And so she went to the library. She also likes to go up and down the aisles at stores, J’Erica likes to walk, she’s very active. And so we had, one of her favorite stores was Target. I don’t know why, but how do you speak to the people in target? I actually received a call from a lady at Target, who said to me, there was somebody here with your child that I was concerned at how they were speaking to her. That’s what this is all about. There is no government program that’s going to be able to keep your family member out of harm’s way all the time. It’s not their job. But, if you build the people and the places, the ecosystem, you can give your best effort to make certain that your family member lives their best life. J’Erica also liked parks. She’d like the swing she’d like… And so how do you identify those parks that are safe, the best times for her to go? And what are the things that she likes to do? And so I hope that you sense the intentionality that I’m speaking of, in building people and building places, rooted around information, knowledge and skills that need to be present to make certain. And so, for example, when my daughter is not feeling very well, she engages in self injurious behavior. She will pinch her arm. Her right arm has all kind of long term markings on it, from where she has broken the skin. That’s something that people around her need to know about, but not only do they need that information, they need the knowledge of what it’s rooted in. It means she’s not feeling well, or it means that there is something in the environment that is troubling her. And so you need to adjust, you need to remove her from that place, but you can’t just grab her and pull her out because she’s going to be resistant. And so what is the knowledge and what are the skills that need to be present in the people and the environment that is the place. And then the last part of the building that I think is really important is building presence. The picture on the left is one of a gazillion pictures of J’Erica Nicole and I riding in a convertible. If I want to totally change my child’s mood, all I have to say is let’s go for a ride. Part of that is her grandmother kept her when she was a little bitty person and her grandmother runs the street forever. If somebody says, I said this, I will deny it, but J’Erica grew up going places. And so she likes being in cars, but she also likes the convertible. And at the risk of being vain, she’s also daddy’s girl. So being in convertible on a pretty day with her daddy, listening to music, which is second only to food in her tier of really important life items is a good day for J’Erica . And it’s not unusual to see that really big smile that you see there. Well, if you were to go to my social media pages, you will see literally hundred hundreds of pictures of me and J’Erica riding, me and J’Erica with the top down. And I have all of these stories. You will see pictures of me, and J’Erica in the fruit stand with her pushing the cart. You will see pictures of me and J’Erica in the doctor’s office. You will see pictures of me and J’Erica and you know that you’re doing it right. When you have moments where, I was driving, down the street recently, and someone drove up next to the car and rolled their window down. And me and my self aggrandizement, just knew that there was somebody else getting ready to speak to me. And they rolled the window down and I rolled the window down and they said, Hey, J’Erica, how are you? And of course, she’s a ham. So she had this big grin on her face, but she had a presence. This person believed that they knew who she was. Now, that same presence exists, whether she’s with me or someone else. And so how does the world around you to whatever degree you are comfortable, have an awareness of the person that is your family member, not this individual with disabilities, but J’Erica, fill in the blank with your family member’s name. How do you help people know who they are that your family member is not just a disability? So, social media, social groups, peer families, you know, families helping families is a godsend. And there are other entities there where there are other families. How do you create a community presence and awareness for your family member? I have the other picture on the right, because it’s miss J’Erica Nicole at the hospital for one of our visits. And yes, I posted this on social media. I also posted a picture and shared a picture of J’Erica’s arm, full of fresh wounds, where I talked about the challenge of trying to support a family member who was in distress, but could not tell you the source of that distress. A family member, I think I posted something to the effect of, I wish that I could say it was always convertibles and sunshine and good music, but it’s not. Because I want people to know this person’s experience. The most difficult post that I had to make was the middle of last year. When I posted a picture of my beautiful child and shared with people that she had been diagnosed with multiple myeloma, and that we were going to work our way through that as a family. And we appreciated folks, respecting our privacy as we worked through that, but I wanted them to know because it is a part of her journey in this world. And I will share with you, that people have been absolutely amazing in how they’ve responded, with dignity and respect to that request. I’ll close with this: every year, when Facebook sends me my top five liked, or favored, or responded to, commented on posts for the year, my best hope is that four of the five are J’Erica. Typically all five of them are J’Erica posts. I walked into a McDonald’s with J’Erica and her brother and a young lady behind the counter said hi, J’Erica, and J’Erica smiled and went up and held her hand out. in what is her version of shaking hands. That’s my hope for my child. That’s my hope for your family member. And so it’s about building people, building places, and building a presence for your family member that creates an ecosystem where they can live their best life. Thank you so much for the time. I would be more than happy to answer any questions. If I could, one of the questions is what kind of pushback or barriers did you find from the medical community when you tried to help them work with your daughter in a way that was good for her? The short answer is we went through a number of doctors until we found one. And so my daughter’s primary care physician is, a combination pediatric doctor and internal medicine, which is absolute utopia for J’Erica because so many of her health conditions present as a child because of her small body, her small frame, her small organs, and this woman took the time to really get to know my child. And so, I mean, there were doctors… there’s an ophthalmologist that we don’t go to anymore. We had to find another because he wanted to tell me the best way to serve my child. And I’m sorry, but that’s not going to happen. I’m not… Here’s what you need to know about her and here’s how we are going to do it. And so, yes, there was pushback, but… I find that there are people who want to do the right thing. And so should I go to the next question? All right, and so the next question is “my son has many of the same characteristics as J’Erica, so I appreciate your story. How do you find people outside of the family or paid caregivers to be a part of your child’s circle?” So, allow me to say that if I have made any of this sound simple, please forgive me. You know, I have said, for example, you know, we train a primary… not a primary care, a case manager. It’s like we went through years of training, a case manager every six months. By the time we got somebody familiar with our child, they were hired away in here for somebody else. And so what we invested in were the support professionals taking the time to find good people. And we were really… We’re fortunate the young lady off camera when J’Erica was at the beach, actually worked with J’Erica for 10 years. Her most recent support worker was with her for six years. And then last year, in kind of a COVID response, she moved outta state. And so we are still in a state of disequilibrium. Now, we have a wonderful lady who works with her at different points during the week and on weekends, but she’s in school, she’s a mom. And so it’s not the same level. And so it’s just really taking the time and recognizing that it’s better to say no to someone who’s not really going to invest the level of energy that you need, than it is to have someone that you are worried about. And just to keep and identify those family members. One of the things that I’ve noticed about my child is that she has absolutely wonderful instincts. The people that she doesn’t like being around are people that she shouldn’t like being around. And so trust your family member, if they don’t like, there’s a reason, don’t force. Look for those family members who are willing to see the person. There are some folks in not only family circle, but friend circles that I don’t allow J’Erica to be alone with, or to be around, because they treat her like a little baby. She’s 31. She doesn’t need baby talk. You know, she doesn’t need to sit on your lap. She’s a young woman. And if people can’t respect that, then with all due respect, you don’t need to be around my child. And so it’s not easy, but it’s necessary. And, you have to be vigilant. You have my prayers. If your son has characteristics like J’Erica because she is the most stubborn human being I’ve ever met in my life. And so I’ll be praying for you. How does this kind of intense focus on your child affect the siblings or siblings? How can you keep it balanced.
Mr. Raymond? Can I interrupt you for one second?
Pardon the interruption I’m realizing we are a little tight on time.
I know you have offered to stay on for a few minutes and I would love to hear your answer to the last question. I just wanted to note that for folks who do have to jump off, we have just put up an evaluation poll and we really value your feedback. So please make sure you complete this, if you have to leave. And now I’m gonna stop talking, and turn this back over to you.
I lost the… let me look at that last… Oh, the intense focus. I think that it’s really important. One of the things that I would encourage you to do, is to not heap the responsibility for your child or family member with disabilities upon their siblings. And so I was very careful to never say to my brother, J’Erica’s brother, if anything happens to me, it’s your responsibility to make certain your sister’s okay, you need to take care of your sister. You need to do this. I helped him have the information and knowledge to understand who his sister was and to develop their own relationship with one another. And now they… and so it’s being intentional and recognizing that as the primary caregiver, parent, primary family member, you need to build a system that will support your child, and that may or may not include their sibling, but, give their sibling all of the information they need and help them to show up in the best way that’s most consistent with who they are. How can you involve the siblings in the community building again, if it happens organically. And so if J’Erica had a sister who was near her age, I might consider her sister being a kind of a peer in social settings that were typical for young girls. But I would not expect her 24 year old brother to make certain that his sister has community building. I mean, she’s not going to go to his apartment. And, so, I would not in that instance, but if she had a sister, I’d certainly explore ways with her as to how she might feel comfortable integrating J’Erica into some settings. In our instance, J’Erica had a god sister, has a god sister, who is a couple of years younger than J’Erica, and she has done an amazing job from accompanying J’Erica to choir rehearsal at church to other things just to be present with J’Erica.
Thank you so much. For all of this. One of the things that I just love about what I heard throughout what you had to say was this idea of how you’ve conveyed. You know, we see our own children, we see them and how you’ve managed to convey who she is and help her do that herself with the people around her, even when that was not necessarily so easy for them to really see who she is.
Thank you for that.
So grateful for the time that you’ve taken tonight. And for the questions that you’ve been able to answer are for those of you who are here, maybe for the first time, I wanna make sure that you know, that we have a number of other sessions in this series that are coming up. You can register for all of them on our webinars page, on our website. We have some amazing presenters, some of whom have already presented one session in this series, but, we’d love to see you at any of these again, and we’ll stay on for a few more minutes. So, if anybody has questions that you wanna put in the chat message, we’d be glad to see them, and we’ll be here, otherwise, thank you very much. And we really hope to see you a future session.
Real Talk About Disabilities:
Issues faced by families of color
These free webinars are for parents and providers caring for children with disabilities. Hear from professionals in the Greater Baton Rouge Area addressing topics that concern their community, such as mental health, racial disparities, life skills, and youth services.