Smiles Included: Navigating through life with our rare disease superheroes
Smiles Included: Navigating through life with our rare disease superheroes
Jackie and Eddy Jones: A rare disease journey of hope, resilience and vulnerability.....and a golf tournament!
Today, we're shining a light on a family's journey with their SKDEAS kid and the strength that it has carved out in them. Meet Jackie and Eddie Jones, the remarkable parents of Travis, who open their hearts to us about their path to diagnosis, the challenges they've faced, and the bonds they've built.
We journey with Jackie and Eddie as they navigate the complexities surrounding Travis's diagnosis. We unpack the medical challenges, such as tracheomalacia and eosinophilic esophagitis, that have become a part of their lives. We also step into the shoes of the Jones family as they maneuver through the school system and IEP process, shedding light on the nuances that come with educating a child with special needs. Eddy Jones provides a father's prospective and the importance of embracing vulnerability to support his family.
And we have some lighthearted content as the Jones Family prepares for the 1st Annual Travis' Troops Golf Tournament on October 15, 2023 in Plainview, Massachussets. Any support for the event is appreciated and they share some insight into organizing similar events to raise awareness and funds for rare disease.
Find out more at skdeas.org/events or email travistroops@skdeas.org
Please visit SKDEAS.org for more information about Skraban-Deardorff and how you can support our superheroes.
This is Emily Beauclair and you're listening to the Smiles Included podcast, navigating through life with our rare disease superheroes. On today's podcast, I'm talking to Jackie and Eddie Jones. This is the first time I'm interviewing the dad of a Skraban-Deardorff child for the podcast, and he shares a different point of view about coping with the diagnosis that's very important to hear, so I'm thankful to both of them for taking the time to share their story. I will warn you, this is a tough one.
Emily Beauclair:Little Travis Jones and his family have been through a lot, so this is my trigger warning. But it's important that we share these stories. And, on a much lighter note, Jackie and Eddie are also going to tell us about Travis' troops and the Charity Golf Tournament they're hosting to raise funds for the SKDEAS Foundation, which is taking place on October 15, 2023 in Plainview, Massachusetts. Details are in the podcast notes and SKDEAS. org, but they will talk us through the plans, how we can help support it, and it's a great model that some of us may want to duplicate to help raise awareness and funds. Welcome, Jackie and Eddie. So we'll start off with you telling us a little bit about your family and Travis.
Jackie Jones:So Travis is six years old. We live outside of the Boston area, we have a little boy named Owen, who's four.
Jackie Jones:We have a very supportive family around My We within five minutes of us and his family is within 10 minutes of us, so we've got a lot of support system and that's been a huge part for us for all of this.
Eddy Jones:Sometimes I don't know how we would be able to do it without the amount of support that we have, which is huge.
Emily Beauclair:It is huge. I just have my sister nearby and I find childcare to be one of the hardest parts of a special needs diagnosis. So Travis is six now. When was he diagnosed?
Jackie Jones:He was diagnosed at a year and a half.
Emily Beauclair:Oh, so a long time ago.
Jackie Jones:Yeah yeah, he was one of like right after the study came out. He was within like six months of the study coming out that he got his diagnosis.
Emily Beauclair:Oh, wow, so okay. So then I have to ask so, so young. So what milestones did you notice that he was missing that made you do the genetic testing?
Jackie Jones:So Travis, actually right from birth, like my, pregnancy was fine, but when Travis was born, they handed him to me and he wasn't breathing. They had to do CPR and they checked his blood sugar. His blood sugar was 10. We were at our community hospital and they brought him to the nursery and had him under like oxygen and all that stuff for the first 24 hours of his life. He was on IV sugar and all that and then they eventually took him out of there but they found that he was still not eating, not maintaining his nutrition, not keeping his blood sugars up.
Jackie Jones:So we were eventually, after four days, transferred to our more acute NICU. That was in Brighton, Massachusetts, St Elizabeth's, and we were there for 31 days and while we were there they didn't really know what to tell us. They were kind of all over the place as to what the potential causes were. When they first sent us there, this was all super acute. They didn't know what. We were the first family to ever be transferred from the hospital that we were at in two years into the more acute NICU. They were talking about having central lines. He was on oxygen feeding tubes, all that stuff right from birth. And we got there their first diagnosis, one of the nurses literally said to me oh, we deal with this all the time. He's got wimpy white boy and yeah.
Jackie Jones:I've never heard that they're high, but apparently traumatic births can sometimes cause delays and all those things. But just as the weeks and the days were progressing and nothing was changing and he wasn't eating and things just weren't getting any better, that's when they started to consider other options. And that's when we you know he had swallow studies, they were doing endocrine testing and you know we had discussed genetic testing. But they don't do genetic testing in the hospital because it's too expensive. I'm a nurse, so we're going through all of this and I'm thinking of all of the worst possible case scenarios that it could be. We were terrified that we wouldn't even be able to bring him home, that he wouldn't make it so eventually. But as the weeks progressed and we still didn't know what was going on and I was like I can, there are things I can do at home. I can do feeding tubes, we can manage oxygen if need be. I just not knowing what was happening with him, we just wanted to get him home and kind of figure out with our plan what we were going to do and get him to genetic testing, as long as he could maintain his sugars and get his appetite up. We eventually got to the point where he could lay in a car bed without needing oxygen and he was taking thick and liquids through the bottle at that point and was able to take a few ounces at a time. But we were doing like literally every two hour feedings just trying to keep his blood sugars up. Checking his blood sugars every three hours, like just. It was kind of a mess there for a little bit.
Jackie Jones:When you're discharged from the NICU in Massachusetts I don't know if it's like this everywhere else, but you're automatically given an early intervention, the VAL. So that's pretty much where all of our stuff started. We immediately had visiting nurses, early intervention. We had people in our house like every day coming and helping us with Travis and making sure that he was going to be progressing in the way that we wanted him to be. We had, at that point when we were discharged, he was on $900 worth of medication every month for to maintain his blood sugars, to a meprosol and just like a thousand other things that we were giving him multiple times a day through the feeding tube just trying to maintain his sugars and keep him eating and not throwing up and all that stuff.
Jackie Jones:And then so at that point he had endocrinology, pulmonology, cardiology, gi feeding, all of the therapists that we were seeing at home. We finally saw the geneticist. I think it was about nine months. But once we got him home and we started with the therapies and stuff, he was eight months old when we were able to take out the feeding tube and he had had an NG tube the old time. He didn't have a G tube or anything but he had feeding therapy, pool therapy, pt, ot, an educator. He was just slammed with everything we could do right from the get-go, and having all of that support really, I think, is why today he's doing so well. But his blood sugar issues resolved after about eight months. The feeding tube was resolved after about eight months and then once we got to that point was when we did the genetic testing and then it was whatever six, eight weeks after that that we got the results.
Emily Beauclair:And what's amazing to me is that I've met Travis and he is like the happiest, fun-loving but active child and doesn't look like he went through this at all. I know.
Jackie Jones:I mean.
Emily Beauclair:I'm listening to all this Like this poor kid. I mean you guys must be scarred from this.
Jackie Jones:There was a big part of me, just from birth, that you expect at like new mom glow and everything's going to be wonderful and just happy, joyful tears. And all I remember is literally them handing me a baby that wasn't breathing and I was drugged because I had taken. I was like my theory as far as epidural goes is like just give me what you got. All I could get out was am I in your way? Like I couldn't even say to them like he, there's something wrong. I saw them starting CPR and then they just took my baby away, gone Like so then they're like cleaning me up and I just had no idea what was happening. So at that point I just like went into my clinical mode. Like there was just like I protected myself and shut myself off from emotion for a long time and it affected my bonding, it affected a lot of the ways that I had to deal with things, because I would just was what's the next thing? What's the next thing?
Emily Beauclair:So, eddie, you don't have, I guess, clinical mode.
Eddy Jones:No, but not a nurse.
Emily Beauclair:But during all of this, what were you thinking?
Eddy Jones:I was terrified. I remember it felt like I didn't breathe for 10 minutes. It was only, I don't know, two or probably two or three minutes less that from when they handed him to Jackie to, I think, jackie she realized something was wrong. The nurses took Travis from her and they started doing CPR, like right next to us in the room.
Jackie Jones:So I remember just basically holding and you hear them calling like code I can't remember what it was in the NICU, but code blue essentially, you know, for the kids.
Eddy Jones:But I remember just holding Jackie's hand and basically just closing my eyes and I started. I just started praying that I would hear the sound of him crying and eventually, after a little bit he did start crying and then they took him from the room and we didn't see him for a little while after that.
Emily Beauclair:This is so traumatizing and the fact that you're reliving this. I have to say again that I just can't imagine this. When I so, when we, when we drove up to the family conference a year ago, my family, travis, was the first person we saw. Like we were driving around the parking lot trying to find a spot and we saw you guys had pulled into a spot and Travis was sitting there with his top hat. Immediately I was like that is a Scrave and Deirdre off kid.
Emily Beauclair:Yeah he's sitting there. He was standing there smiling and like we're about to meet him, and now I feel like we followed you around the whole hotel. We kept seeing you. But yeah, I, just I, it's so, it's, it's crazy, because he's such like a lively, active Kid. It's like when did when did that start to happen? I?
Jackie Jones:Mean, even literally he. I can remember he was six months old and he would sit there and, like, football would be on the TV and he'd go touchdown. You know, like and or wait, would he actually say. We would say I taught him.
Eddy Jones:I taught him the symbol for you know, feel gold.
Emily Beauclair:You know, I got excited.
Jackie Jones:And then one of the first things he did, just like we don't even know if it was like a tick or like what it was at the time, but we he would do like the hey, what's up? Like he'd like toss his head up, like how you doing, you know, like from like, even just like a little baby, like he. He always had personality. There was no like Denying him.
Eddy Jones:Yeah, he could. He could pick things. Like I remembered trying trying to teach him things, he can pick it up Pretty quick. He's always been like very, very smart and he's he's a problem solver. I remember when he did finally start to walk or you know, if there was something up on the counter that he wanted, it was too high, like I remember him going and grabbing a chair, pushing it over to the counter, climbing up and like I'm like how are you doing this? It's amazing.
Eddy Jones:Yeah, we didn't know, like you, know, a year ago we didn't think, you know, you weren't gonna walk and be as mobile as you are or like it's just it's crazy how he did Develop and he fought. You know he fought every step of the way and he fought hard and you know he's he's amazing. He's done very well, fighting for himself and for what he's gained.
Jackie Jones:He's always had that attachment to music too because, like I mean, from the NICU, we were playing music to him and you know I would sing to him all the time and you could literally see his heart rate decrease, like when we were playing the songs and stuff.
Eddy Jones:And then, just as he's gotten older, you know we've Really encouraged everything he does with music, which is why he loves dance, he loves music, he's you know he's, it's in his soul, whatever it is, it's in his soul a lot of, a lot of the words that he can say is actually from Songs, like he, a lot, of, a lot of his speech has developed Because he likes, he likes to sing and he'll pick out certain lines or words or, you know, phrases in songs and when that, when that line comes up, if he's listening to the song, when that line comes up, he hits it. Every time he hits, he hits the, the word, every time. You know.
Jackie Jones:It's like a good thing. But we used to sing like truth hurts to him. You know the Lizzo song, and it would come up to the point where it was like that we just keep it pushing like I, I, I, I in Travis is sitting on the back seat I, I, I, like he's yeah.
Emily Beauclair:What's his favorite type of music?
Jackie Jones:Oh god, I think he is really attached to the greatest showman. I think all every song oh yeah. No, that has not gone anywhere. He still walks around every day with the top hat, still has a button-up shirt that he has to wear every day, very specific ones. He has a ring master costume. He walks around then oh yeah he does.
Eddy Jones:He actually he likes a wide variety of music, but the the greatest showman is that like that type of um, I don't even know what Like musical theater.
Jackie Jones:Yeah, he can act out as he's doing it. I would say yeah.
Emily Beauclair:And it's amazing that he's doing so well. So I have to ask about I know so early intervention started really early for you what therapies do you think help Travis the most?
Jackie Jones:So I think honestly that it has been the, the coordination of therapies. I would say that he's get benefits from having a variety of people that are in his corner and can specialize in whatever like and, as far as early intervention goes, they come in and they're only there for whatever an hour. They're not there multiple times a week. So when they come in, they're teaching us how we can most Benefit him by using him as of their model during their, their sessions. So, as they were doing things and teaching them how to roll over and things like that, they were teaching us how to do it, so we were incorporating it into our everyday lives.
Jackie Jones:I think, um, maybe the pool was extremely helpful, um, when he first started that getting in the water and, you know, moving his joints around and all that stuff without having the pressure Of the muscles and all that stuff, um, but I would say If I had to choose one that would be the most helpful, I would have said feeding and nutrition. Um, I didn't get along with her very well just because we had different opinions about things, but she helped immensely, like the I mean, there is nothing that kid won't put in his mouth now but it took us that amount of time. We had him on the feeding tube and While they had the feeding tube they were using like the sensory stuff in his mouth and Um, things like that.
Jackie Jones:And then she helped us through the trialing of the different foods, um, and then we got to a point where we were using we were making our own coconut milk Meal weird concoction of a formula thing Um through a pouch, yeah, yeah and then, you know, then saw foods and things like that, but it was, I think, the feeding Therapy and getting them to a point where we can maintain his nutrition and um keep his blood sugars up without having to have that be a concern.
Jackie Jones:That was the um the most Important one, that we benefited from the most, because now he he does very, very well when it comes to foods. Um, he does have that um trachea malaysia. I know one of the moms was asking about that today on the chat. Can you explain what that is? So it's a weakening of the muscles that like support the trachea and stuff, so that when he's taking breaths or like if he Is eating and he coughs, then it's just An easier way for them to aspirate or have food go down the wrong tube and cause um. Travis has never actually knock on wood, had pneumonia but um, you know, aspiration and things like that choking is of much higher risk For kids with trachea malaysia.
Emily Beauclair:Does Travis have anything else other, any other diagnosis other than Skraban-D eardorff?
Jackie Jones:Um, I mean he has the epilepsy associated with Skraban-D eardorff and he also has um eoe. So he doesn't have any other like genetic or metabolic or any other issues that have been Um specifically identified. You know we were worried about the blood sugar thing initially but um, they say as long as the trauma continues, which you know. It took us that amount of time to get him to a point where he could be feeding normally. Um, then that transient hyperinsulinism that they call it at the beginning when you have a traumatic pregnancy or a traumatic birth, and that low blood sugar issue um Can sustain as long as that trauma is occurring. So every time he ate he was being reintroduced with trauma. Every time he got an IV he was being reintroduced with trauma. So that's why I think the Insulin, the hyperinsulinism, you know, last of that amount of time.
Jackie Jones:So I would, now that we've moved past that, that's no longer considered a diagnosis for him, um, so it's just the um eoe, which is the eosinophilic esophagitis and that is a um allergic reaction that he's having to dairy products, um, anything with milk, um, and they're saying so he also, he, and he has like chronic respiratory issues um most, you know, due to the tracheal Malaysia. But on top of having the eoe, the um eoe exacerbates his airways and his esophagus so that it makes it so that it Backflows and that's what causes mostly Travis's stuff is all upper respiratory his nose, his ears, um stuff like that. So, um yeah, that's what he we're dealing with now.
Jackie Jones:Yeah, and I've heard a lot of kids have some respiratory issues as well so you're not alone there and the only way to diagnose eoe is to have a um endoscopy, where they take a sample and um do a biopsy of the esophagus, um, and then the stomach. They do it's called the triple scope. They they scope in um three different areas, um, and that's how they test it under a microscope and stuff, and that's how you get the diagnosis. So, um, it's not like a blood test or something that, unless you're their kid, is having symptoms that it would be something easily identified.
Emily Beauclair:What would the symptoms be?
Jackie Jones:He was sick for eight months straight. There was no, there was no time when he wasn't coughing, sneezing, gagging, waking up in the middle of the night, throwing up. And this was only Two years ago.
Eddy Jones:Yeah.
Jackie Jones:I think he's had the diagnosis a year, um, like to the point where the school was writing letters to the doctors saying that he wasn't able to access certain parts of his education because he couldn't breathe. Um you know, because we would take him to our regular doctors and they would be like, oh, he's got another cold just started school, no big deal, like we're in a pandemic. I don't know if you've heard, you know, like stuff like that. And um you know, and we were like, no, I think there's something more to this and um you know. So it literally took the school actually writing notes for us to. We got um follow-ups with um mass general hospital and they did all of the scopes and everything that determined that he had that condition.
Eddy Jones:Um, and it was. It was basically a never ending cold. Um, he was. They would put him on, you know, his doctor would put him on antibiotics, um, and you know, steroids and, and they would help for A week or so, but then, as soon as that course of the antibiotic ended, the next day, he was just like you. He would runny nose, coughing, coughing to the point where he would start vomiting up all night long. Um, you know, so I mean, he wasn't, he wasn't sleeping at night, and Then at school he would start. You know, he had he missed a ton of school that year, um, because of this and like a week out once a month.
Eddy Jones:Yeah, at least Um, and so that's when you know the school was starting to get concerned and writing, writing letters.
Eddy Jones:So you know, anybody has like a little sniffle, they're freaking out eventually, after this was nine months of him missing school, him falling behind in school we had a parent teacher conference that they said he was way behind what they were expecting his goals for him to reach that year because of all of the school he had missed. So there was one night where Jackie was at work and he was up again throwing up and I basically had reached my breaking point and I said I call Jackie, I said I'm bringing him to Mass General and I'm not leaving until something is done. I can't wait eight months for a follow-up appointment, I can't wait six months to see somebody. It's enough is enough. We've done the last eight, nine months of that and we've gotten nowhere. So I brought him into Mass General it was probably midnight, one o'clock in the morning, and I walked in there and my sister-in-law was with me, actually she came with me and I walked in there and I told them everything.
Eddy Jones:What had all of Travis's medical history, what was going on? They put us in the ER and they did, I think, three treatments of nebulizers and they had finally gotten his breathing and his coughing down to the point where he was actually comfortable again. But and then they tried handing me discharge papers and telling me to set up a follow-up appointment. And I said, no, we've done this for the last eight months. We need to figure something out. And they said, no, here's the discharge paperwork we're gonna send you out.
Eddy Jones:As they were trying to just force me the discharge papers, he started coughing again and vomiting and I turned to him and said, really, like this is how you're sending him out of here. Like he can't breathe, he's vomiting all over himself, he's uncomfortable, he's crying. But finally I said I just told him I'm not leaving until we figure, until we do something. And they said well, what do you want us to do? And I said try something. We haven't done yet. So they ended up admitting us and they did immunology and allergy testing and that's how we eventually ended up going down the course where we found out he had EOE.
Jackie Jones:That doesn't come up on allergy testing or immune testing. But it got us to the point where at least we could follow up with the pulmonologist and who was a part of an airway team that did all of the testing and stuff. So now we just completely he has, we use all dairy alternatives oat milk, almond milk, vegan cheeses, stuff like that when we make his meals. And some people they use steroids to treat it consistently, but he doesn't need that and we just. He also takes chronic azithromycin to keep him from getting the recurrent infections. So as long as we keep up on our regimen, he does well.
Emily Beauclair:I'll start off with I love my husband very much, but I do struggle with him being assertive when it comes to my son's health. So, eddie, I am very proud of you. It's like you're dwelling onto one of you siblings who got shot at evolvable levels in our own life. We've got the power saved from all our grief Is thatading in on his death that are seen in you now.
Jackie Jones:You know as a kid who had lived a life so prayerfully, as a changed life, and if you don't even realize that yes, yeah, it's actually I think I think he does a better job of fighting because I mean I, because I have the medical background, I'm like, okay, I understand how this goes, like that may not work, but like what's the next step? And I like try and like reason with them, but he's, he's like no, like that's just get it done.
Eddy Jones:With most things in my life, I am fine with sitting back, and if it takes six months, whatever it is what it is, very go with the flow. But with with Travis it's a whole different ball game.
Jackie Jones:It's and I think that honestly, the trauma that we experienced in his early life and all that has caused anxiety and PTSD and everything else, to get into the point where that that fuse that you know that you usually can try and hold back, gets lit a lot faster.
Emily Beauclair:Yeah, and I guess when you, when you got the diagnosis, I always, you know, hear stories about it, but you know any how did you feel when you found out that you know Travis had scrape and deodorant?
Eddy Jones:It was. It was mixed emotions. It was nice to I felt relieved that we weren't the only ones, that there were. There were some ones, that there was actually some information out there, that there was some. You know, that there was research being done, that there were doctors looking into it, like I did feel relief for that part of it. But that's when we also learned that we were most likely going to be facing seizures and long term developmental delays. And you know mental gait issues and you know walking issues and I don't know. I don't know if at that point Travis already had braces on his feet today.
Jackie Jones:He got. The money was like eight, nine months.
Eddy Jones:Yeah, so he had already had them. But so we had an explanation of kind of why his feet were kind of growing kind of curved the way they were. It was good that we knew there. I mean there was relief that we knew there was research being done and we weren't the only ones out there. But at the same time, when you get the diagnosis, you also get some scary information that, okay, these are going to be some challenges that we're going to be facing and we got to start trying to prepare for it. I don't think there's any way you could ever prepare for the first seizure or the first you know, anything like that ever happening. I don't think there is. You try, you try and be as prepared as you can be, but I don't think you ever are really prepared.
Jackie Jones:I think there was a sense of relief for both of us too. Is that because, with everything that was going on with Travis, everything was so traumatic that we were concerned that it was going to be progressive and potentially terminal. And to know that there were kids out there that were 1516 at that point I don't think we had anybody older than 15 or 16 diagnosed but to know that there were kids out there that were surviving it and not necessarily regressing and it wasn't terminal, was a huge relief for me. We grieved that there was potential for a loss of independence and worried about what his life was going to end up looking like, but the fact that, whatever it was, he was going to have a life meant a lot.
Emily Beauclair:Yeah, I remember being very relieved that there were adults with the diagnosis and that gave me some peace of mind. And you were talking about school before, so is Travis in a regular school right now?
Jackie Jones:He is in the same school that I went to. He is in public school, so he's there for a full five days a week, full day. He'll be first grade in the end of August. He goes from 830 to 230 every day and during that time he spends, I think, like an hour or two in the inclusion classroom where he does the math, science, social studies, reading, like they bring him in for certain topics and then they bring him back to the they call it a sub separate classroom where they focus more on the activities that they were doing in the class and then they also pull him out for his PTOT group therapy, adaptive PE and speech.
Emily Beauclair:It's interesting that they pull him out to then like go over, like you mentioned, to go over what he had just learned in the class.
Jackie Jones:So because I mean he's not going to learn it at the same speed as the other kids, so they they bring him in and that's where they he has, like the ABA, so he has a one to one throughout the day and when they bring him into that separate classroom he has, he has a special needs teacher that, like, will go over the things that they're working on with his stuff and a lot of times they'll incorporate the stuff that they did in the class. If he they brought him in for, like, the science portion of the week or whatever, then they would bring him back to the class and they would talk to him on the level that he will understand about what he learned in the science class or what he learned. And you know, if they did, if he went and participated in a reading group, then they would bring him back and they would start working on his letters or something like that.
Emily Beauclair:Oh, I like that. And is that all part of his IEP?
Jackie Jones:The amount of time that he spends in each class, the amount of therapies that he gets, the amount of activities and things like that. That it's all incorporated in the IEP, not specifically what he is doing in the class. So if they're he's doing science, I don't know if they're working on plants. You know that stuff is directed by them, but they do communicate that to me and that's one thing that I was very clear about in my IEP is making sure that communication was like top priority, because if you go back to early intervention, like I was saying how that was very directed towards, like what we they taught us things so that we can incorporate that into his daily life. I try and use that same model when it comes to him doing stuff now. So if they're working on letters and they're working on spelling his name, or if they're working on ABC, I want to be working on ABC. I don't want to be trying to confuse him by working on DEFG.
Emily Beauclair:So how do, how do the teachers communicate with you to let you know what he's learning?
Jackie Jones:So we have a binder that goes back and forth in his bag every day and they tell me what he's doing for the day. If it's helpful to people, I can post our log up on the site so they can see what type of page we use. But they tell me what they did for the day, what he was successful at, how much he had to eat at his meals. They tell me how, because we're still in the midst of potty training, like most of our kids are. Yeah, so they tell me how that's going and they tell me any challenges that he's had for the day and then they'll give me a kind of update of what's going on for the next day. So if there's anything upcoming I can kind of help prep and, you know, get him ready for what's coming out.
Emily Beauclair:So, overall, have you had a pretty easy school process and IEP process, or have you had to fight a lot?
Jackie Jones:I would say, initially I had to fight a lot more, you know, and that's just because they didn't know me and I didn't know them, and I didn't know the process and I didn't, you know, I didn't understand and I had to keep reminding myself that it's not just me that's going through this. Every parent that goes through an IEP process whether or not they have somebody who has dyslexia, add, whatever everybody goes through this traumatic process where you're, you know, expected to identify faults in your child and how you can make things better. Nobody wants to do that. Nobody wants to admit that there's something wrong. So I try and look at it as like it's not, it's just their. I mean, it's exactly what it is. It's an individualized education plan. It's what's going to work for him. It kind of makes me feel like he's special in that way that he gets what he needs.
Jackie Jones:But when I first went into the process it was extremely traumatic because they were.
Jackie Jones:I always knew that there was going to be barriers, but I never wanted to pigeonhole him and saying that this is who he's going to be and I'm going to limit what I teach him because that's all he's ever going to be.
Jackie Jones:I didn't want to limit him in any way. So there are people out there that will say things like for a three-year-old that they should really only focus on life skills, and I'm like, how do you tell a three-year-old that all they're ever going to do is be able to tie their shoes, like it's just, it was asinine. So you know that once we got to a point where we all realized that we are going to do everything we can to help support him and that fostering the communication between us and the school and making sure that we're all on the same page, continually making sure that we can address things as they need to be changed, because just because you have an IEP, it's set in stone for the school, but that doesn't mean it's set in stone for you. You can always go back and ask for assessments or addendums and you can always reject anything in an IEP during the IEP process. It's just that you don't want to reject an IEP in total, otherwise they won't get any services.
Emily Beauclair:And this is good advice, because they don't tell you like. They don't tell you you can reject certain things or that you can like. I think the first time I went in there I didn't realize what I was getting myself into and then I was going to be surrounded by all his teachers that were just like telling me all the things that I can't do With his best interest in mind. It's not like I don't want to put them down, but it was just like it was like. I think I definitely love crying.
Jackie Jones:I cry in the middle of it. I cry every single day Like there's yeah.
Emily Beauclair:I cry in the middle too, but yeah, but like now I kind of go in there like like it's a business meeting. I'm like I need to be prepared and I know I'm going to be surrounded by a lot of people and it's a little bit different. But I feel like for me, I feel like they're going to get harder as he gets older.
Jackie Jones:For our first IEP meeting.
Jackie Jones:not knowing what we were getting into, we brought an educational advocate and our educational advocate was from early intervention and she just loved Travis and wanted to make sure that he was getting everything that he needed. So she volunteered, as somebody who had been his service provider before, to come to the meeting with us and ensure that he was getting the most amount of services that he could possibly get. The school has been very supportive and I think a lot of that has to do with the diagnosis, because if you don't have any diagnosis, then they are like oh well, it's just a lazy kid or poor parenting or something like that. But if you have a diagnosis and you have other people that you can see have gone through this, then you know it gives them a little bit more of a frame of how they're, how you know more to what to expect. So, yeah, we didn't have to fight super, super hard, but having her as the educational advocate that came in with me, was and with us was very, very helpful.
Emily Beauclair:So I have to switch topics. Now Tell us about Travis troops, because I want to hear all about this. I love this idea and I love this idea of this golf tournament that you guys are running.
Jackie Jones:Back in nursing school we watched a movie called the runs those oil and it was about parents that were on the cutting edge of the treatments and therapies that go along with that particular diagnosis for their, for their child that was going through a terminal illness. And for me, like after seeing that, I was like I need to do something, like the change is going to have to start with me. I need to get fighting for him and I felt like by starting Travis's troops, that it kind of gave him his community that was going to be there to support him family, friends, having a way to identify that these are the people that are here for you. And that's kind of how it started. And then from there are just it's been kind of how we worked it into the ways that we feel like we can be most helpful in supporting getting the genetic research and, you know, helping out the foundation so that we can get the resources that all of us need.
Emily Beauclair:Yeah, and I think a lot of us are trying to, you know, come up with some fundraising ideas for to help support the research, and we're going to have Kyle Hillman on the next podcast talking all about the foundation and what they're going to do with some of this money that we're raising.
Jackie Jones:He works so hard. He is an incredible resource.
Emily Beauclair:I don't know who his employer is, but I hope his employer doesn't listen, because I feel like they're going to be like this guy works more on this. How do you?
Jackie Jones:have time to do this. He is everywhere.
Emily Beauclair:But so, but you guys, you came up with the idea of the Travis troops golf tournament to help raise funds, so tell us about that.
Jackie Jones:So my sister-in-law used to work for a nonprofit. I was like what can we do? Just, you know, we'll be your guinea pig, tell me what we can do. And she was like, well, why don't you just do a golf tournament?
Eddy Jones:So yeah, my sister has been huge with helping guide us and, you know, set up the meeting with the country club. And you know, I don't know what to ask, I don't play golf.
Jackie Jones:All I know is that I just needed a way to try and build this community, spread awareness and get as much money we can for the foundation. So she's been instrumental in that. We talked to the golf, we talked to our local golf course. They were willing to help us out and so you come up with a. They give you a price for how much you have to pay per golfer and then you charge an additional amount over it and you get the money for that and then during the event, we're going to be doing raffles and you can buy Mulligans and there's going to be drinks and food and all this stuff to help increase funds. While we're there too, we're aiming for like $5,000, but you know, just as like a first run, but my sister-in-law has run events that have gained $50,000. That was like Martha's Vineyard Ritzy.
Eddy Jones:Nancy, yeah.
Jackie Jones:But you know, at this point I'm happy to give something back to the foundation and to have people in our community know about what's going on with him and Jake too. Jake LaRosa is another kid, that's a SKDEAS kid, and they live on North End of Boston. They're going to be coming down and bringing family and we're going to be doing it all together.
Emily Beauclair:So the more people involved in getting people to know about our kids and how they can support them and if people want to learn more about it I know that there's an events link on the SKDEAS. org page yeah, and they can register there.
Jackie Jones:I was getting ready to just like have people write me checks. I'd put it into an account and then I'd figure out how to deal with it afterwards. But it's good, being in the digital age, that everything could just be done online. Everything's going to be put in.
Jackie Jones:Anybody anywhere can contribute, it's you know, one of the biggest things that we've been focusing on is getting sponsors and having businesses sponsor holes, because we're going to have advertisements for the people that do sponsor us and puts like their logos on the back of the golf court carts and have their information on our signage and stuff like that. Right now we've had FAB Finds Foxboro in Foxboro supporting us. They're a presenting sponsor and we also have Parsons Audio that's supporting us and New Car. If anybody does want to help support the golf tournament, we're looking for people to sponsor holes. You can reach out to us through the Travis Troops at SKDEAS. org If you want to sponsor and we can put your logo somewhere.
Jackie Jones:Or we could also definitely benefit from anything that could be put into a raffle basket or you know if anybody has a vacation house they'd be willing to give a week up for so that we can raffle off something like that. Like anything would be helpful. One of the things one of the parents has already given me Tyler's mom has given me jewelry to put into a basket that I'm planning to put together for different items from people all around the world. Anybody that's willing to give us something to put into the raffle to just show kind of globally how from all over the world, that we're everywhere. That was one of the ideas that I had, but if you know, whatever comes in, we'll put together a basket and use it as part of our raffle to get more funds, so anything would be helpful.
Emily Beauclair:I can't even imagine how much work it is that you guys are putting into this.
Jackie Jones:Yeah it's. It's been like a year-long process. It's a little hurry up in weight, but I'm excited to see it all come to fruition, even if it's not a great amount. I'm just happy that we could at least get the process going so that we can keep doing it and having more successful events in the future.
Eddy Jones:Yeah, we're hoping it will turn into an annual event and I mean, this year was the year that we put together the template that was building everything and coming together with everything was the hardest part, but hopefully in the years to come it will be a lot smoother, a lot easier, because everything's already gonna be put together.
Jackie Jones:We have a hole-in-one contest too, so we're gonna have a car come out and whoever gets a hole-in-one on whatever the hole it is that we identify that they're gonna be able to win a car. We're really excited about it.
Emily Beauclair:No, that's exciting. And yeah, it's the first one and hopefully there'll be many more and maybe there'll be more satellite Travis' Troops ones.
Jackie Jones:Maybe there'll be a Jake's Jamboree or something or a Joe's Jamboree. We would be happy to help give our template of what we did. If anybody wants to reach out, I'd be happy to help.
Emily Beauclair:Yeah, thank you. I think we would all appreciate that, because we're all trying to figure out ways to help and that's a really exciting and fun way and a lot of work, but I think it's valuable, so I can't wait to hear how it turns out.
Jackie Jones:I can't wait to see the video of all the kids. That's gonna be the best, haven't? Everybody's given us pictures of all their kids and I'm gonna put them together in a video that we're gonna play throughout the event, and it's gonna be cute to see everybody's reactions to all of our kids.
Emily Beauclair:I hope we can use that video someplace else too.
Jackie Jones:Oh yeah, I'll post it on the site when it comes up.
Emily Beauclair:Yeah, exciting. Okay, eddie, I'd like to switch back over to you because we've had a lot of moms on the podcast, but I'd like to take advantage of having a dad, and especially a dad of a boy, cause I think I'm in sort of a similar situation and now I get to ask you these questions because I actually haven't asked them of my husband. I'm like, oh, this is gonna be kind of sensitive because my husband, for instance, loves hockey, has always wanted his kids to grow up and play hockey, and Joe is not the kids ever following in the footsteps of what their parents want anyway. But it's one of those things where sometimes I see Joe struggling to get out on the ice and his legs are really hard, it's hard for him to put skates on, and I don't know how this impacts my husband, and especially when you have we have two boys, just like you, and it's like do you treat them differently? And so my question to you, I guess, is really how has this diagnosis really impacted your relationship with your kids?
Eddy Jones:It does. It comes into my mind actually a lot when I'm sitting and I think most dads with their sons would probably want a rough house or wrestle or go in the backyard and play football or stuff like that. Luckily, travis is built pretty strong and Owen, our youngest son, is built very strong. But when I'm playing a rough housing or whatever with Owen, it does cross my mind. I try not to limit Travis with certain types of play or anything like that. I really try and play with Travis the same way that I do with Owen. You know, rough house with Travis and he actually likes he really likes to go in the backyard and play football. He'll hike the ball and try and throw it or put it on the ground and kick it and we'll run around and they'll both jump on me to tackle me with the football. So I try and treat them the same, play with them the same, even though Travis can't really talk in full sentences or doesn't have a ton of words.
Eddy Jones:When we do an imaginative play with whatever action figures we're using, I try and I just will make up voices for the action figures and have conversations with Travis and even though he'll have conversations back, but it's just Travis's own language and most of the time I can pretty much make out what he's saying or trying to get across while we're playing. But with Owen I'll do the same thing. We'll have conversations back and forth with the characters. So I do the same thing with Travis. I try it as much as I can to not really differentiate between the two, if that makes any sense. I try and push Travis the same as I would Owen with anything, with riding a bike. We're trying to get him get the motor skills to do the pedals and everything. And Owen has picked it up a lot quicker than Travis. But it's still try and push him. Just because he's struggling with it it doesn't mean that we're going to stop, but I try and push him the same.
Jackie Jones:Owen might have a standard bike and Travis we might just get the velcro that goes over it. We just adapt things for Travis so that they are as close as they can be to what every other kid does.
Emily Beauclair:We've had a lot of conversations with other women and moms and there's a lot of tears, there's a lot of crying and we feel extremely overwhelmed. How did you feel when you got this diagnosis and do you ever feel overwhelmed by it?
Eddy Jones:Oh yeah, when we were transferred to St Elizabeth's we hadn't had the diagnosis yet or anything like that, but it was. I was doing the best I could. We stayed at the hospital. Luckily the hospital had a room for parents to stay in and there weren't other babies in the NICU that had parents that needed to stay overnight or anything like that. So most nights we were able to stay, but I did.
Eddy Jones:I was going, I was sleeping at the hospital, getting up, I was trying to do the feedings at night with Travis so Jackie could sleep and then I would go to work. I would commute from the hospital and on the way, on the way to work almost every day, I would break down and I would pull myself together by the time I got to work and then I would go through the day and then I would go back to the hospital at night and the hospital had a chapel. So before I would go up and see Travis and Jackie, I would stop at the chapel and I would break down a little in there, I would pray and try and pull myself together so that when I went upstairs I would be strong again and be able to support Jackie and Travis and just handle what I needed to handle and do what I needed to do. But there were there, have there have definitely been, times where I kind of fall apart and Jackie's been a huge support for me and she's always been even. I don't feel like I have to be afraid to show emotion. I know I don't have to be a rock all the time and I think that's probably important for other dads to hear. Is you don't? I guess that's the at least for me, that's the stigma of being a man. Is you, of being a father? Is you? You have to be the one to hold it together. You have to be the one that's strong, you have to be the one that everybody it leans on and depends on and you have to do certain things. And if you don't, if you aren't that, if you aren't always strong, if you aren't always rock, then you're less of a father, you're less of a man. But I think it's important to know that this, what we are all going through, is extremely difficult, that I think a lot of other parents really they say they understand and they say, oh, that must be really rough to go through. What you're going through and you don't. There's no, there's no way you can actually understand and realize what we are going through, unless you're actually going through it. So I just think it's it's important for other dads out there to know you don't always have to be strong, you don't always have to be a rock. Six years ago I never thought I would be the type of person not not that it's not a bad thing but I just never saw it for me to be a person that goes and sees a therapist and talks to a therapist and that is is on anxiety medication and I just never saw that in my future.
Eddy Jones:Travis's Travis's first seizure. You know his birth was traumatic but his first seizure was extremely difficult to to watch your son, to watch his eyes roll, roll into the back of his head and his lips and face start to turn blue and him, his breathing like almost come to a stop and trying to trying to call 911 and hold it together to actually for them to understand what was happening. And it was after, after that first seizure he had I started. I started having anxiety attacks and if I saw it got to the point where if I was watching a show or a movie or a commercial on the TV came on and there was a sick child. That's all. That's. All it took is I went into a complete anxiety attack and couldn't catch my breath room would start spinning. It was. It was just a complete anxiety attack. After whatever three, three or four of those episodes, I finally decided to try and figure something out to manage it. And that's when I started talking with a therapist and the first therapist I talked with I didn't like I didn't really get along with. So it did. It was a little trial and error. I did try a couple different people but I finally found one that I liked. I did start taking anxiety medication and I haven't had any anxiety or panic attacks since, luckily, but I do.
Eddy Jones:I think it's important for people to know that if you know what we have gone through, what we've seen, some of the things we've seen are extremely traumatic and if you need help, there's no shame in asking for help and reaching out and talking with somebody. There's no shame in having to take medication to make yourself to deal with things, to try and make yourself stronger again. I guess I want to make sure that got out there to the other dads, that you don't always have to be the no emotion. It is what it is. We deal with it. Rub some dirt on it like man, like it's you, don't. You don't have to be that it's you. It is okay to reach out and ask for help if you need it. You can be more vulnerable, I guess, at times.
Emily Beauclair:And I appreciate you saying all of this and sharing this, because I think moms and dads need to hear that. Yeah, so it's like it's. It's not that I'm glad that you, that you went through that, but I'm I'm glad you shared that and that that you're so open about, like how you're a human and emotions, especially about your child. I'm sure that resonated with with a lot of people just now. So, thank you.
Eddy Jones:Yeah, yeah, it probably. It took me longer than it should have to get to this point where, yes, things are it's hard to talk about. You know, obviously I get emotional, but I think it's worth talking about so that other people can hear it and say I'm not alone. There are, there are other people that feel the way I feel, so maybe this is something that I can look into. Even even just knowing you're not alone, knowing that I'm not the only one that feels this way, that might help.
Jackie Jones:And I think a lot of times that emotion can sometimes look like shutting down for guys. So on the other side, as the wife and the situation, I was like, well, it feels like the weight of the world is on my shoulders, like what, what is he doing? Why is he, you know, why is he not, you know, stepping up in that way? But it wasn't that, he wasn't, it was that he was. He was trying to. I was like why isn't he feeling the same way I am? But it was. He was trying to be the rock, he was trying to be the support, he was trying to fight through all of those things that is expected of his dad. And the perception was different on my end and it took us going to therapy together and working through it together to realize what was actually going on.
Emily Beauclair:Yeah, thank you for sharing that. I think it's really helpful for a lot of people. Okay so, and either of you can answer this question when do you see Travis in the future?
Jackie Jones:If he gets to be like Andrew Hauser, I will be ecstatic. If he is talking and conversing and happy and just wants to tell his story, wants to live life, I will be happy with that. You know, building his support system around him it's something that we've made sure that we've tried to do. And as long as he continues to have the support system around him and he's happy and healthy and wants to enjoy his life, as long as he gets to that point, I'm happy.
Emily Beauclair:Yeah, Andrew is getting a lot of recognition and I'm really glad that he shares his story with everybody, Because it's just it's we get to hear a voice. So I can't wait for more of our kids to start talking.
Jackie Jones:Yeah, and Travis, travis does. I mean he has something to say. He may not talk, but he has something to say and he is. He fights for every word and even when and one of the bigger things that they've told us is decreasing his frustration and even when it makes no sense if he sounds like he's trying to be funny, laugh at a joke that you don't even know what they're saying just giving them the opportunity to say that, no matter how you're going to communicate I'm going to try and meet with you on that level has has been because he doesn't stop. I mean, he literally will just ramble for hours and nobody will know what he's saying, but at least you know he, the more he tries to talk, the more he will, and he it's in there. It's just needs to. We need the key to unlock it.
Eddy Jones:Yeah, the school, the, his teachers say that he's. They labeled him as a total communicator. Yeah, so he tries to. He tries to use words, but he also will use. He'll use sign language. He'll use his, his iPad. He is very, very good with with body language, like if he tries to get, if he, if he gets your attention and he's trying to verbalize what he wants and you're not understanding, he will grab you, pull you over to what he wants and point at it and he will.
Jackie Jones:he will get his point across, I'll take credit for that, yeah, and if that doesn't? Mean verbal in the future, if it means through an iPad. As long as he's happy and as independent as he possibly can be, if that's in a group home or that, you know, not necessarily like a legit group home, but like somewhere where he's surrounded by people who will support him, I'm happy with that.
Emily Beauclair:Thanks for listening. I hope you found today's discussion helpful in your rare journey. If there are any other topics you want me to discuss, questions you have for some guests, or if you want to be a guest in the show yourself, please reach out to me via the email included in the show description. Please also visit SKDEAS. org to learn more about Skraban-Deardorff and consider making a donation to help fund research to help our kids. Talk soon.
