Building community for children with disabilities with Raymond A. Jetson

Christina Kozik:

Hello and welcome to Just Needs, a podcast where we talk about parenting children with disabilities. I’m your host, Christina Kozik, and let me just say I’m so glad you’re here. This podcast is a project of Exceptional Lives, a nonprofit organization that supports families like yours. You can learn more about Exceptional Lives at our website, www.exceptionallives.org.

 

Friends, this week I am so excited to be bringing you another interview. Today, I am talking with Mr. Raymond Jetson. He is the president and CEO of MetroMorphosis. He’s also an elder and a former state legislator. He’s also the former CEO of the Louisiana Family Recovery Corps and has worked with the Louisiana Department of Health and Hospitals. It’s very clear that we can see that his heart leads him to his work, but today we’re going to be talking about his most important role, his role as a dad. Mr. Raymond, thank you so much for joining me today.

Raymond A. Jetson:

Thank you so much, Christina. I am grateful for the opportunity to share with you.

Christina Kozik:

Absolutely, absolutely. So I’ve had the privilege of hearing from you before when you did a webinar for us and you talked to us about your beautiful family. Can you tell our listeners about you and your family today?

Raymond A. Jetson:

Well, thank you so much. So my family, my immediate family, is my wife Tammy of 36 years at this point. We have a 25-year-old son, Jeremy Louis, and the queen of the house is my soon-to-be 33-year-old daughter, J’erica Nicole, who was diagnosed with Cornelia de Lange syndrome at birth. And as I oftentimes share with people, 

 

J’erica Nicole has taught me some of the most important lessons I’ve ever learned in life and opened some of the most valuable doors that I’ve ever walked through in life.

 

Christina Kozik:

Yeah. That’s amazing. When we did the webinar, you shared just these different stories about J’erica and your family, and we got to see some great pictures. So I’m going to have a link to our webinar in the show notes for our listeners who maybe haven’t had a chance to see that. But in that webinar, you really explained how to build a village or a community for your child, and you laid out three really important parts. 

 

It was building people, building places, and building presence. 

 

Can you explain what those are and why they’re important?

Raymond A. Jetson:

Well, thank you so much. These are three critical elements. I have a picture that’s in my office that’s in my study at home, which is a picture of J’erica surrounded by four beautiful little girls. And it’s a moment where J’erica is wrapping up six weeks of summer camp where she had no adult or near-peer supervision. These young girls helped J’erica to navigate summer camp with only their support. And it was in that moment that I realized the most important thing that I could do in life was to recreate that in rolling scenarios where she was surrounded by people who knew her, who cared for her, and who made sure that she was okay. And so that’s been the goal.

 

And we talk about three things: building people, building places, and building presence. And so who are the people that are around your family member, and in our instance, Christina, our children, who are the people who inhabit their world? And how do we help these people to first of all know this human being, not a diagnosis, not a list of this or that, not as being disabled or having disabilities or neurodivergent, none of those things? Who is this human being who happens to show up in the world in this way?

 

And so I give support staff lots of stuff to read, but I also talk to them. And so for example, the young lady who supports my daughter now, J’erica Nicole walks to the door about the time this young lady comes each day, and we have a glass door and so she can see out. And J’erica has started making a particular noise to let me know that Dominique has arrived. And so I shared with Dominique that you’ve reached a special place because you have your own sound. J’erica lets me know when you are here.

 

What I am attempting to reinforce with her is that J’erica communicates through sounds; she communicates through gestures, and so you need to listen closely. And she has begun to do that. And so how do we help people begin to understand how our loved one shows up in the world? How do we give them the information? How do we, in some instances, become gatekeepers of people who are around, but for those people who show up and are open to help them to understand? And so how do we build these people? But then, how do we build these places? 

 

Where are the spaces that our loved ones show up in either by necessity or by preference? And how do we begin to impact and influence those spaces?

 

Obviously, for a whole bunch of years, that was school. And so how do we show up in school? I was a pastor for 23 years of J’erica’s life, and so how do I influence that environment? Where does she like to go? She likes to go places where there’re music. One of her support staff for a while had a boyfriend who played in a band. And so J’erica would go to their band rehearsal.

Christina Kozik:

Oh, that’s amazing.

Raymond A. Jetson:

How do I make certain that that space is accommodating to her? How do I help them understand that she needs to sit in a certain space? Because if she’s too close and you just jump into a song, that’s too much stimulus for her, and she’s going to react. And so how do we identify the spaces where she likes to go? She likes to go to the library. Well, J’erica doesn’t understand. And so how do we help her navigate that space and build that space where the librarian who works there knows that that’s J’erica, and how can we help her be more comfortable?

 

But then, lastly, building the presence, allowing your family member to exist in the world as their own person. And so one of the things that I have been really intentional about is using social media to share J’erica with the world. Almost every day, I have a memory that shows up on my Facebook timeline that’s J’erica. At the end of the year, when my social media says, “Here are your top 10 things for the year,” 9 of the 10, if not all 10, are J’erica, because she’s built her own little community of people out there who believe that they know her because they understand that when she smiles, her whole face smiles, that when she’s upset, she injures herself.

 

I mean, I’ve shown them how she has broken skin on her face and her arm and talked to them about self-injurious behavior and what triggers it in J’erica. And so people feel as though they know her. And we will be driving down the street; one of the things that we do when the weather allows is drop the top in the convertible; she loves it; but we’ll be driving down the street, and somebody that I will not know will pull up and say, “Hey, J’erica, how are you?” 

 

And so just building this presence so that people know this individual who happens to show up in the world different.

 

Christina Kozik:

Right. I have, in my own family, done these things without realizing I was doing these things. We’re very involved in our church ourselves, and we’ve been at our church since, I mean, my son, since before he was one, and he’s about to be nine. And so people that may not even know his name, they know who he is, they know who his parents are. When they see him running around, they know who he is. And most people know his name because we’ve been there for so long, but we’ve done these things without even really realizing we were doing them. 

 

And I think, if I’m being honest, I’ve been trying to be more intentional about building people around my son since your webinar and since you laid these pieces out for us because we are transitioning this year from elementary school to middle school.

 

And so it dawned on me about halfway through the school year that these people that I’ve built around him in the school building are about to be gone, and we’re about to go make that transition. And so I’ve been trying to be much more intentional with, “Okay, who are these people that are going to be in this next stage of his life or these next couple of years?” And just being intentional with building those people. 

 

And I really thank you for laying this foundation out and helping me personally put some names to these things that we’re doing and also helping me stop and think and put a little bit more intention behind it so that way, if, like I said, we’re making a transition in life, I can go, “Okay, now I need to focus on people,” or, “Maybe now I need to focus on places.” And that’s been very helpful to me personally.

 

Raymond A. Jetson:

Well, thank you. Allow me to just say, real quickly, you said the word and some version of the word three, four times in the last minute, and I really want to name it, and it is being intentional.

 

Christina Kozik:

Yeah.

 

Raymond A. Jetson:

This requires an intentionality. The world around us is not set up with our children in mind.

 

Christina Kozik:

Yes.

 

Raymond A. Jetson:

And so if our children are going to feel present and valued and able to be the best version of themselves in the world, we have to be intentional about impacting the world in a way that creates space for that to happen.

 

Christina Kozik:

Yes, absolutely. I could not agree more. That’s something that I have shared and said in another episode, and it’s something that I share and say with people very regularly is this world was not set up for, I always use the term neurodivergent, but the world was not set up for neurodivergent individuals. It was set up for neurotypical people.

 

And so we have to accommodate our children and sometimes even ourselves, so that way we can be, like you said, the best version of ourselves. And I want to share with you real quickly the story that you shared in the webinar. So, I don’t know if J’erica still uses it, but you had mentioned that J’erica was using an assistive technology device to help her communicate. And so you shared the story about her in church, and she used her device to say something along the lines of that she was done and she wanted to leave, and she did this while you were preaching. And it was endearing to me because I’ve been there. I’ve had that where I’ve had to look at the crowd and go, “Well, on that note, we’re out of here.”

 

And the thing that really made me stop and reflect is I’ve had a different reaction based on where we were or who we were with. If we were in those places or with those people that we’ve built, that I would call as our community, nobody bats an eye, right? There’s no embarrassment that I might feel or anything like that; we just go, “Oh, okay. Well, on that note, we’re out of here. Talk to you guys later.” 

 

But then there’s also been places where people don’t know our family. They don’t know my son, and I don’t want them to think that he’s being rude or disrespectful; he’s done. And so it really illustrated how important it is to have that community and also to accept that this is your child and they’re living in the world and they are a human being, and when they’re done, they’re done. And that’s how they’re going to tell the world, and that’s okay. There should not be any shame or guilt or embarrassment with that.

 

Raymond A. Jetson:

But there are those moments where the reality is the way the world experiences our family members makes us feel uncomfortable. And that’s okay.

 

Christina Kozik:

Yes.

 

Raymond A. Jetson:

I took J’erica Nicole to a doctor’s visit recently, and as we were walking in, there were these little girls sitting over as we were headed to the elevator. And as has happened for 30, soon to be 33 years, people focus in on J’erica’s stature; she’s 4′1″ and weighs 70 pounds, even though she has this almost full head of gray hair now. She has three fingers on one hand, four on the other, and she just presents differently. And I could tell the little girls were staring. 

 

And almost 33 years later, there’s still moments that that makes me feel uncomfortable with children. And with adults, quite candidly, I get mad still at times, but the thing that I can best do for J’erica is help people, those who are open to it, understand that this is who she is, but this is a human being.

 

The moment you reference, we were in church, J’erica had an assistive communication device that she was pretty skillful at navigating. And one of the prompts on there was, “I am ready to go now.” And her godsister was the voice, was J’erica’s voice for a whole bunch of years. So I mean, I was beginning a sermon or early in the sermon and had one of my really important pregnant pauses where there was quiet in the room and you heard this little voice saying, “I’m ready to go now.” And everyone just laughed because they knew that this was my daughter, but it was just a really special moment.

 

She does not use the device anymore. We had a moment in our home where, when she came home, she would put the device on the counter and navigate it. And she was telling me by gesture that she was hungry. And so I walked her over to the counter where her device was, asking her to show me on her device what she was trying to say. And she just stood there and she looked at me, and the expression on her face was, “You clearly understand what I want. Why do I have to touch this thing? I’m done. I’m not touching it anymore. You know what I want? Get me some…” And she just stood there, and she would not touch the device. 

 

And at that moment, she was done with that device because the things that were really important to her, she felt as though she could communicate them well enough that people who were around her with any regularity would understand how to meet her needs.

 

Christina Kozik:

I mean, that’s amazing. I’m learning more and more about communication and communication styles, just as a side note, and to be able to hear this, that she’s developed her own language, her own way to communicate with y’all and with her support workers and the people around her, the people that you’ve placed around her. And that’s amazing that she’s able to do that and that you guys accepted that and didn’t force her to have to continue to use something she didn’t want to use.

 

Raymond A. Jetson:

Yeah, but this is the moment, that’s one of those really important moments in life, Christina, that I would encourage your listeners to really hone in on because we had an important decision to make at that point. We could have insisted that J’erica continue to wear this device and press these buttons and record and update prompts because that was the way that the world would be most comfortable in engaging with J’erica.

 

Or we could allow J’erica to be most comfortable in herself and then doing all that we could to help people understand, “here is how she communicates.” 

 

She does not use words, but if you will watch closely, you’ll know when she’s hungry. You’ll know when she wants to go to the bathroom. You’ll know if she wants something to drink. You’ll know if she wants to listen to music. You’ll know if she’s done with you in that moment.

 

Those things that help her navigate the world, that get her basic needs met. You’ll know when she’s ready to go; she’ll go stand by the door and look at you. And if you listen to her noises, I mean, she makes a lot of grunts inside. If you listen, there are different pitches. There are different tones that communicate, “I am happy,” “I’m not happy,” “I don’t feel well.” And all of these things she can communicate in J’erica.

 

Christina Kozik:

Right.

 

Raymond A. Jetson:

And so how do we help the world understand J’erica, because her receptive communication is through the charts? She understands really well. It is her expressive communication that we have to step in and help bridge the gap between the way J’erica expresses her communication and the way the world is able to comprehend that. 

 

And we won’t be able to help the whole world understand J’erica, but building the people who are around her, helping the spaces conduct themselves or show up in ways that allow her to communicate, and sharing this presence, where people understand what these things mean when they happen.

 

Christina Kozik:

Yeah, that’s a perfect example of all of that. And yeah, thank you for sharing that. Well, before we finish up here, I wanted to ask you these two questions. So we’re getting ready to go back to school here really quickly. I’m going to ask this in a two-part question, but is there anything that you would share with teachers and therapists that teachers and therapists could do to help support families? But then also, is there anything you would share that parents can do to help teachers and therapists know more about their child and support their child?

 

Raymond A. Jetson:

So thank you for that. 

 

At varying points in J’erica’s journey through school, we were either really excited or dreadful about going back to school, depending upon where she was, who was surrounding her. 

 

J’erica had a middle school teacher, Ms. Norvis Smith, and I thank God that I had the opportunity to run into her by happenstance at a doctor’s office recently and got to share with her, again, just how much my family loves and treasures her because of what happened in J’erica’s life for those two years that she was with Mrs. Smith. There were other moments where it was dreadful to anticipate what was going to happen.

 

But the thing that I would share, as your son is getting ready to go to middle school, the thing that I would do is I would go to the middle school and I would do some intelligence gathering. I would go and talk about and introduce my family member, but I take a really good look at the school and the way that it operates and understand who are the people that I need to inform. Sometimes it’s important for the teacher to really be informed in who our loved one is, but also that web goes much further.

 

Christina Kozik:

Yes.

 

Raymond A. Jetson:

And so I’d make certain to spend time with the principal, the assistant principal, but I’d also go and talk to the people who worked in the cafeteria.

 

My child loves to eat, and so the cafeteria was going to be a big place in her life in school. So I’d go talk to the people in the cafeteria and share with them that even though she’s tiny, this little person eats a lot. And so don’t be surprised if she wants more; there are some things that she won’t eat. And so talking to those folks and giving them an opportunity. And when I’d bring J’erica to the school, we’d go to the cafeteria, and I’d allow her to meet these people, and these people to meet her so they knew who J’erica was.

 

The custodial staff at the school, because my daughter sometimes will wander and if she gets really aggravated, she’ll leave out of a space real quickly. And so if the custodial staff was out in the hall and saw this little person gallivanting down the hall, I wanted them to know who she was and how best to approach her in ways that lessened the anxiety of the moment rather than seeing this adult running at her, grabbing at her, which would only heighten it.

 

And so just really thinking about who are the people, the same notion of building people, building spaces, building presence, how do I do that now in this school? 

 

And while teachers are critical, that network; my daughter loves music; I’d ask to meet with the band if there was a band director or a choir, “Is it okay for my child to come in from time to time and just sit in and be a part of this?” And so building that, really being, here’s that word again, intentional about building there, and so helping them to do the best.

 

I think, and here’s the last thing that I’ll say about the professional environment, really being clear on the expectations of the professionals, the therapists who engage with your family member, and making certain that that therapy aligns with whatever other private or public therapies you may be accessing so that they are actually building on one another rather than being totally separated-

 

Christina Kozik:

Yes. It’s so important.

 

Raymond A. Jetson:

… or worse than that, being damaging to what you are otherwise trying to accomplish with your loved one.

 

Lastly, I would say to parents, be a royal pain in the butt when it comes to writing the plans of care, the 504 plans, and the other stuff; you are the expert on your child.

 

Christina Kozik:

Yes.

 

Raymond A. Jetson:

The other people may have credentials; they may have titles; but you are the expert on your child. Be comfortable in that, and insist that that be acknowledged, that you may know your craft, but you don’t know my child like I do. 

 

So we are going to talk about what works and what may not work from the position that I know my child. And if we can’t agree upon that, then we need to end this and set it up another way and just really lean into what worked. I apologize for the long response there.

 

Christina Kozik:

No, no, I love it. It’s all great. It’s all stuff that, if I’m not doing already, will definitely take to heart and start doing. But I mean, those are things that I tell people myself is you are an expert on your child, and you’re also an active member in writing these plans, in their schooling, in their care.

 

And a shout-out to the custodial staff and all of those other, quote, unquote, “essential workers” that we have in the school system because they really do play a huge part in our children’s lives. 

 

We also had a custodian for the last however many years my son was in elementary school that when he was having a really hard time, they might go grab him and he would come and talk to my son. And I mean, he’s just a big teddy bear. He’s also a father. And it was just one of those people that they knew could help talk him off a ledge without having to go bring in some of those other professionals, like the counselor or the assistant principal, that when my son would see, he would become defensive, but when he would see the custodian, he would calm down and know, “Okay, I’m safe, we’re good.”

 

And so yeah, those are all huge, huge players in our kids’ everyday lives. I mean, when they’re in school, they spend more time in the schoolhouse than they do in our house. And so having relationships with all of those people really is important. But yeah, is there anything else that you would like to share before we wrap this up?

 

Raymond A. Jetson:

One last thing, many years ago, a very dear friend of mine gave me a paperweight or something that was a stone. And the words that were written on it was, “Prepare the child for the path, not the path for the child.” And I realized somewhere along the way that that actually worked for my son, that the greatest thing that I could do for my son was to prepare him for the path rather than trying to orchestrate the path around him to work for him.

 

Christina Kozik:

Right.

 

Raymond A. Jetson:

But for J’erica Nicole, I had to do both. I had to prepare her for the path, but I also had a responsibility to try to prepare the path for her to show up and be her best. And so I’d say to any parent or family member out there that both of those things are important. 

 

Prepare your family member for the path, but also prepare the path for your family member as best you possibly can.

 

Christina Kozik:

Well, Mr. Raymond, that’s a beautiful, beautiful little nugget of advice there. And thank you, thank you for sharing that with us.

 

Well, on that note, thank you again for being here, and I always love talking with you. You always have so much great information to share with us, and I can’t wait to see you in person and maybe even meet J’erica, this larger-than-life person that I keep hearing about and seeing pictures of. But on that note, yes, thank you again.

 

Raymond A. Jetson:

Thank you.

 

Christina Kozik:

And where can people find you, Mr. Raymond?

 

Raymond A. Jetson:

I am active on the social medias on all of them. I’m @raymondajetson, J-E-T-S-O-N. And so please reach out to me, Facebook, Twitter, Threads,-

 

Christina Kozik:

Oh, yeah. That’s a new one.

 

Raymond A. Jetson:

… Instagram, LinkedIn. So yes, so please feel free to reach out to me. I’ll share whatever I possibly can.

 

Christina Kozik:

This podcast was hosted by me, Christina Kozik, for Exceptional Lives. You can also subscribe and follow the podcast at our website, www.exceptionallives.org/justneedspodcast. Our website has articles and guides and a disability services finder for Massachusetts and Louisiana. We’d love for you to follow us on social media. We’re on Facebook and Instagram at @exceptionallives. We’re also on TikTok and LinkedIn. Just search for Exceptional Lives. If you enjoyed this episode, please let us know by leaving a five-star rating or review on Apple Podcasts or wherever you’re listening.