Helping Our Children Become Their Own Best Advocates

This week's featured episode discusses a very important topic -- transitioning our Heart Warriors from dependents to advocates -- and it doesn't happen overnight. Lisa Rodebaugh does an excellent job of sharing how she raised Andrew Rodebaugh so that he could become his own best advocate but this show is about so much more than that! Tune in to hear how Andrew Rodebaugh is not only an advocate for himself but also an inventor working to make life better for people everywhere with his creative and practical app. You won't want to miss this fast-paced show from Philadelphia, PA at the Podcast Movement!

Transcript

spk_0:   0:00
as you

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were in

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a transition yourself from being his advocate to his cheerleader. Now a cheerleader still in the room. But the job has changed

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way.

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Welcome to the 13th season of heart to heart with Anna. I am so excited to hear I am at podcast movement and Lisa Robot has come all the way to Philadelphia to well, OK, she lives in Pennsylvania, but still, she came up to the hotel and here we are. Thanks to talk shoe. We are actually doing a lot of podcasts right now at Podcast Movement 2018. And we want to thank hi L for providing the microphones of headphones for us to do this recording a live recording at podcast movement. This is so exciting. First time for me to do this, even though it's my third time to attend the podcast movement. So I want to thank you for coming and here we go. We're going to be doing a different topic every week. Starting in Season 13 today will be tugging about helping our Children become their own best advocates. And like I said, our guest this lease, a veritable Lisa vertebra is wife to Bill and they have been married 23 years. I must write three years. By the time you hear this, they'll be married 23 years and she's mom to four boys. Will, Andrew, Jonathan and Luke and one sweet little girl, Katie Joe. She's also the mother to two angels who have never been held on our forever misnamed hope. And Joshua Andrew is 17 years old, living with hypoplastic left heart syndrome. Lisa taught for almost 10 years in the Philadelphia school district before becoming a mother. And this became quite helpful when, as she says, she was pushed into homeschooling her special needs Children, a decision that has ended up being great for everyone. As a former home schooling mom myself, I totally appreciate that. She's been devoted to helping her Children reach their potential, and she leads by example while home schooling. She has had her Children in a variety of activities, and she stays involved in her church and her own communities. Welcome to heart to heart. With Annalisa,

spk_0:   2:13
Thank you for having me.

spk_1:   2:14
I am very excited to have you. What some of our listeners may not know is that Lisa is also a volunteer with hearts, unite the clothes. She's helped me with script writing, and she's a hug ambassador and exciting to me to get to know her a little bit better in a way that's totally different. I know from our previous conversation we said that she works really hard when transitioning Andrew from pediatric care of his heart to becoming an advocate for himself. So can you tell me some of the things that you did with Andrew and how young he was when you first started making him responsible for his own heart care?

spk_0:   2:48
Yeah, sure. Well, honestly. And it was something that we just did gradually his whole life along the way, when he was a toddler. I remember that we would give him his medications. You would put it in the syringe because it would be liquid, and we would allow him to sport the syringe into his own mouth. And each time we did that, we would say, OK, so this is the Jackson and this help share heart squeeze better. And as he grew, we would change the language to appropriately fit where he waas. We always called his heart a special heart. But then we also gave him the language. You have Hypo Plastic left heart syndrome explained to him gradually as he grew what that meant and what that meant for his life. So it was just a gradual thing that we've always done, and it's grown with him.

spk_1:   3:34
I'm really glad that you did that. We did that with our son, Alex, as well as many of my listeners know, my son Alex also has hypoplastic left heart syndrome, and that is such a mouthful for us adults to try and teach a three year old with hypoplastic left heart syndrome. But I felt it was important for him to know, and I had a little medical art bracelet for Alex from the time he was able to wear a bracelet. Of course, I had on it, HHS because trying to inscribe hypoplastic left heart syndrome, but true for Eddie Bagels. But I'm really glad to hear that you did that. And I imagine from a young age he was able to say, I have either a chile chess or something. Yes, similar to That's great. I love how you also let him know the names of his drugs. It was interesting to me as Alex was growing up, we did the exact same thing. And Joey, his older brother, could tell him what drugs he had. Did you have the same situation

spk_0:   4:26
with siblings? Also, what was going? Absolutely once. It's a family thing.

spk_1:   4:31
Exactly. It was. I hear it a 1,000,000 times. Everybody does. We're taking two jocks. It. What do you feel was the most important skill that you helped Andrew developed during his transition period? We all know that transitioning from team to adult is difficult, no matter what, but a kid with a heart defect, we have a whole new set of challenges and obstacles that what is the most important skill that you helped Andrew to develop?

spk_0:   4:55
So if I had Andrea answered destruction, I would love out of his mouth to come trusting in God. Advocacy would be the best skill, practical skill, I believe that we taught him, but that comes from a firm foundation, trusting that God is in control of the situation. So that's what I would want him to say. But the practical skill would definitely be advocacy, and at a young age he would watch me advocate for him. I would bring him right into the conversations. We would have them before appointments. We would have them after appointments. One thing I forgot to mention the previous question. Waas When we would leave appointments, I would throw the phone to him and have him call his grandparent's so he could tell them Hey, this is what the appointment was and that would give him practice in the language and describing how he felt about it and just having a conversation about what it meant to just be told by the doctors. Well, this is how you're doing today, and this is what we see happening,

spk_1:   5:47
whether or not there was going to be another test

spk_0:   5:52
and Children. Tosco's always been good pulling the Children in with the appointment conversations as well. So we were just following their lead in a lot of ways and then reinforcing that at home as we went. But yes, advocacy would be such an important thing, and we have the best team of doctors in the world buds. They're human, and it's important for our Children to understand what we're wanting to hear out of this appointment. And if you don't hear it, ask questions. Be sure,

spk_1:   6:21
right, and even if you do hear it, but you're puzzled because let's face it, they use words that they're using every single day that we don't use a nor normal vocabulary and so someday could come up that scares them or their concerns them. And if they don't pipe up right away, they're sleeping with that worry, and it affects them in so many different ways. So I think learning our teaching them to become their own advocate is so important. And it sounds like you're doing it by leading by example, which I think is probably one of the most powerful ways that we can teach our Children. Let's talk about some advice you have in the third segment, but for now, my last question before we take a quick break is, What do you wish you would have known to do to help Andrew during this transition period that you only learned after the fact? Because, let's face it, hindsight's 2020 and we always learn things afterwards. At the same time, if I had known

spk_0:   7:15
right, so I'm gonna borrow a friend of mine's her daughter. Her name is Kendall, and she says, don't bring down my positive and looking back, that's what I would have taught Andrew. There were situations that I would put other people in control of him, and they would be so nervous about this situation that they would prohibit him from doing other things later. And when he finally had the ability to tell me how that made him feel, it was detrimental to him in each situation. Now we learned to get past those moments, but I would have loved to have avoided it. So I would say, Don't bring down his positive. Have him. You know, Listen, I could do this on my hand, be his own voice And again that ghost advocacy

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takes this hot industry. We're offering us a mechanical hot, and he said, now that I've had enough to give it to someone worthy, My father promised me a gold undressed tour list, held my hand and asked me where I wanted to go. Whatever stripe for conflict that we experienced in our long career together was always healed by humor.

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Heart to heart With Michael, please join us every Thursday at noon Eastern as we talk with people from around the world who have experienced those most difficult moments

spk_4:   8:32
for by the Baby Blues sound collective. I think what I love so much about this D is that some of the songs were inspired by the patient's. Many listeners will understand many of the different songs and what they've been inspired. Our new album will be available on iTunes. Amazon dot com. Spotify. I love the fact that the proceeds from this CD are actually going to help those with congenital heart defects Enjoy music home tonight forever. Look,

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you are listening to heart to heart with AMA. If you have a question or comment that you would like a dress down show, please send an email to Anna Dworsky at Anna at heart to heart with anna dot com. That's Anna at heart to heart with anna dot com Now back to heart to Heart with Emma

spk_1:   9:28
When you and I communicated before we decide to do this show, you told me some really interesting ways that you and your husband encouraged creativity in your Children, and you talked about how Andrew's heart even had a role in something that Andrew developed. So why don't you share with my listeners what it was that he developed and how you came about that.

spk_0:   9:47
Okay, well, I'll go right to the punch line. Andrew is just amazing in so many ways, and he's gifted in so many ways, and he just recently finished and put up on the Apple store. His first act called Aqua Hydration. Really excited about it. But rewind about seven years, and we, my husband and I got the boys a gift for Christie's, and it was an Apple computer. And with that, we gave the challenge. You may only use this computer to create something or build something or play on something that you have built or created. And with those words, that was it. I got so lucky because Andrew just took it and ran with it. And this is always funny. Toe talk to a heart mom. He began coding right away, and that meant coding with the computer, not

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Thio Alert. Arrest Cardiac arrest way. Don't want going into cardiac.

spk_0:   10:44
So we have that word in our

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fair. You know, it's also voting, as in program codes for the computer. I just think that's amazing. How did he learn? Did you give him a book? Did they go on you to

spk_0:   10:58
know, I get a computer and I gave him instruction. Um, and that was really

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you Had a close

spk_0:   11:02
really know this is a natural outpouring of Andrews. It is amazing. It's like a Dr Walker. I mean, it's been and he was 11 years old and I guess when he was around 11 half 12 he brought me the first search engine. Like Google. The first search engine he built. He built a search completely. Yes. And I said to my husband, This is for realism. It and I think it's for real. And from that moment on, I mean, I didn't know how to direct him. I just gave him opportunities. I gave him opportunities and put him in touch with people who did know what to do because I didn't code. I don't hold. I don't know anything. He knows amazing things. So it was just kind of leading him and then letting him go.

spk_1:   11:50
Yeah, yeah, that's what's so exciting. I had a similar situation. We bought Alex a Lego Mindstorms kit when he was eight. And for those of you who don't know, Lego Mindstorms is an amazing Lego kit where they have a computer and you have to program the computer. It has sensors. You tell those computer what to do and like you, I had no clue. My eight year old was building things. I had no idea how to build or what to do anything. But I became a robotics coach who was expected to be a robotics coach. And just like you, I just provided the resource is sound other people to come in and do some training sessions. But wow, Isn't it amazing how, as homeschool moms, we have the ability to provide these resource is, and then just watch the kids go. I just think it's fabulous. Okay, So tell me. You said that the APP is already at the Apple store.

spk_0:   12:44
It iss its online.

spk_1:   12:45
Okay, so tell us how we can find out what's in it. Just

spk_0:   12:49
it's called Aqua Hydration and just go to the APP store. And it's two words. Type that in and you'll fund.

spk_1:   12:54
And why do we all need this? Lisa?

spk_0:   12:56
Okay, well, and this is really awesome. And I just can't get over this part of it. For Andrew, his health is very good, but it changes between good and a very bad day if he's not hydrated, if he's not drinking water, and that's important for all of us. But for Andrew, it's critical, and it's the difference between a visit to the E. R or not. So he took that, and he's always been like a solutions oriented child. So he just kind of took that and ran with it. Developed an app that tracks your hydration, gives you encouragement and prodding to keep drinking. And I'll tell you, the last two weeks since it went live, I have drunk move for water on Really, What a difference. I'm well hydrated. And what a difference

spk_1:   13:38
it does make a difference. I started a diet at one point, and they said to drink eight ounces of water before you eat, and it'll help you to eat less. Yeah, was waiting. It's absolutely true. It does help me, and you're so right about hydration being imported for our hard kids. I mean, you're right, it's important for everybody. But for our heart Children, it's even more important because if they're dehydrated, they can have electrical problems in their heart. And yet that can require a trip to the E R. And we want to avoid that at all. CS is Andrew Making money on his actors is a free

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out Andrew's making money dollar 99

spk_1:   14:20
not expensive at all and I don't know a lot cheaper than a trip to the E. R.

spk_0:   14:27
And I have been impressed with how much he updates has happened. Keeps on top of it because again, he's a 17 year old kid and this is his first app, and it's amazing. But there's things that he wants to improve, and he's just so professional. I just I get a kick out of watching him deal with his customers.

spk_1:   14:43
I just love that. And so tell me, do you think that his heart defect his development of this afternoon is going to paved the way for his future?

spk_0:   14:54
Absolutely. I mean, he is interested in computer science, and we're looking at colleges. The end of this week, we're gonna be looking at another one, and so I think his gifting is guiding him in that way. But the things that he has developed along the way you see, his life experience is very much at fire His absolute first app, he developed Waas a text to speech after where you could speak and return it in to typing, and now these were already out on the market. But he made it free, and he made it accessible to some autistic families that we are close in touch with. And it was, you know, something that he knew through his experience. Andrew was actually nonverbal his 1st 4 years on and again I have I have a son who's autistic now. He's never been nonverbal, but we are around enough that we understand that that's a big thing where they could use support and help and have a cost effective. So Andrew developed a free one,

spk_1:   15:52
so it looks like he was 12 0 my gosh. So he is not only an advocate for himself,

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but for others have shot special needs. Absolute

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heart to heart With Emma is a presentation of hearts, unite the Globe and is part of the hug Podcast Network Hearts unite The Globe is a nonprofit organization devoted to providing resources to the congenital heart defect community to uplift and power and enrich the lives of our community members. If you would like access to free resource is pretending to the C H T community, please visit our website at www congenital heart defects dot com for information about CH D, the hospitals that treat Children with CHD summer camps for CHD survivors and much, much more.

spk_3:   16:48
Hi, my name is Jaime Al Croft, and I just published my new book, The Tin Man Diaries. It's an amazing story of my sudden change of heart as I went through a heart liver transplant. I can think of no better way to read The Tin Man diaries than to cuddle up in your favorite hearts. Unite the Globe sweatshirt and your favorite hot beverage, of course, in your hearts unite Globe mug, both of which are available. The Hug podcast network, online store or visit hearts unite theglobe dot

spk_5:   17:20
You are listening to heart to heart with Anna. If you have a question or comment that you would like to address the show, please send an email to Anna Dworsky at Anna at heart to heart with anna dot com. That's Anna at heart to heart with anna dot com Now back to heart to heart with

spk_1:   17:41
Lisa What advice do you have for parents of teenage CHD survivors who are listening to the show and are worried about how to transition of their Children.

spk_0:   17:51
So every kid is so individual, and I just want to take a minute, as I say this, that it is always important to be very aware of who is in the world that you're in and those who are in the C H d world. It is so varied on how well kids were doing. And it's just what a conglomeration of kids that were doing very, very well on kids who were struggling. And kids like Andrew fall kind of right in the middle. So it's important for you to know your child and to know what their strengths and weaknesses are. My husband and I have always tried to look at their weaknesses but then take their strength and used that to raise them up with it. And it's really been wonderful. So as your child approaches the team and then the transition age, you have to ask yourself, where is your child and how much are you gonna have to be involved in their life? So that really has to be a huge factor in where you look so at this moment if everything stayed the same and who's going to be very independent

spk_1:   18:56
may be wealthy and you look at all these abs, right? But we all need to

spk_0:   19:02
be aware that it could turn for him and he could be in a situation. So what I've always done with all of my kids, not just Andrew is always have a plan A and A Plan B. And don't make the plan be like, Oh, darn, I have to do this now, make it equally as exciting. Strive towards that. So if your child has options and that you have options so you don't get to the point that they're stepping out into adulthood and you're thinking that they're going to be independent but then you have a medical emergency that pops up well, you have some contingency plan in place. I

spk_1:   19:33
think having a contingency plan in place makes perfect sense. And when my son was ready to go to college, one of the things that we looked at was, where is the nearest good cardiac hospital? Absolutely. We didn't want to be stuck in the middle of nowhere, and then he have something some kind of accident come up where the hospital would freak out and not know what to do with a kid with HHS. In fact, my son's cardiologists said, I don't want you to go Thio and he listed certainty as yes. Luckily for Alex, he said, Okay, because we did what you what you're talking about. We said, Well, maybe you can't go to rural Texas, but look at where you can't go. And so that really did make a big difference for my son. Now what scared me was that he decided Brooklyn, New York, was where he wanted to go over 1000 miles away from home. But if anyone deserves to spread their wings, don't are CHD Survivors deserve to spread their wings. Actually, I just love that. I think your advice is right on. It's one thing to transition a child or team to adulthood, but it's a whole other thing when you're talking about CHD kid and they're talking about taking on their own health care, that can be a lot scarier. What advice would you give to Paris to help them prepare their Children to be their advocates? And I know we already talked about that some in the first segment, but what happens when they're going to? They're cardiology appointment with us. I

spk_0:   21:04
have kind of walked it through early on and made it so I was easing myself out of the room, not really out of the room. So Andrew will be 18 in December, and we have already had certain appointments that he travels. He goes to a wonderful high school now down in Center City Science Leadership Academy. It's fantastic. It was a perfect transition from home school, too school. And there are certain appointments that he travels from Science Leadership Academy, too. Children's hospital signs with self into the appointment and handles and then comes home when he's done. Now we have to have special permission for those particular doctors, and that was very easy to come by. But we set that up and we knew that those were things that we could really step back out and let him again spread his wings on that and with the other things, like the cardiology appointments. It's gonna be a long time before I want EJ myself completely out of the room. But I can edge myself out of the conversation and I have been doing that. My husband and I have been doing that and just kind of letting him take over. Even yesterday, I handed him the phone and said, Why don't you order your medication now? For most of us, that might seem like just a phone call and no big deal. But the specialty medications come with just a series of questions that you have to ask to really get to the next stage and be able to get it. And he did it seamlessly and the medication was ordered. And I will never order medication for him again.

spk_1:   22:33
Oh, my goodness is so fabulous And it's been nice. It's been a general transition. It hasn't been scary. You're not expecting him one day when he's 17 to be totally dependent on you. And now when he's 18 all of a sudden, totally independent. And I think that's what we have to do. Is that general transition and let them know this is what you're gonna be doing for the rest of your life and say You do have to take responsibility. Is you in

spk_0:   22:56
a transition yourself from being his advocate to his cheerleader, now a cheerleader still in the room. But the job has changed.

spk_1:   23:05
Yes, we are kids. Biggest cheerleaders. I would agree with that. So we are almost out of time. I can't believe how fast this time. His guns. I want youto leave us with some advice for parents of Children with congenital heart defects to help them make that transition as seamless as possible. We've already alluded to this a little bit, but I'm gonna let you have the last word,

spk_0:   23:26
right? Just walk with your child and look at where they are and where they're going and give them. All of the resource is again, Andrews. Very independence, but And there are many situations where that is not the case. Look, for your resource is be ready with those. Resource is before you need that. There's lots of good resource is that I could probably name off, but it's

spk_1:   23:49
including this way past with other pair to have given great advice.

spk_0:   23:55
Yes, yes. This thing have Kathy Kohner was You did You did a show with her and the machine? Yes,

spk_1:   24:03
Funner. I mean, right off the top of my head. Several names of really strong advocate parents are coming to my what I liked about Kathy Keller show was that person has had a stroke, and he may not be able to transition to the same degree that Andrew are Alex can. But she gave some excellent advice as well. So I like what you're saying. Meet your child where your child is. Don't expect them to be somebody who they are not, and find the resource is in your community and online. That's where we're so lucky. Don't you think so? Oh, absolutely. Thank you so much for being such an excellent guest today least. Thank you so much. Find all these people are milling around if you can't see it, but it's really exciting to be here. A podcast movement. I am thankful to talk to you in Ohio for lending us their equipment today. That does conclude today's episode Heart to Heart with Anna, and I just want to ask you if you all will consider taking just a moment to rate our podcast, and it's really easy to do. All you have to do is launch the Apples podcast act happy the search tabs and enter heart to heart with Anna, my purple logo bowl show up. So tap on the album Art, which is the little boy holding the balloon in a purple sunset, tapped the reviews tab and then write a review. And it doesn't have to be very long. Something short is fine. And then you'll enter your iTunes password to log in tap the number of stars you want to leave us for a rating. I would appreciate five stars, and if it's not five stars, I'd appreciate a quick e mail. Just let me know what I can do to make the show even better. The title text and the content and then hit Send, That's all. That's all that's required. I did it last night for heart to heart with Michael. Think it took me five minutes. It only took me five minutes because I had to shorten what I was saying because I was a little wordy. I wanted it to be something everyone would read. And so I was editing myself. I always do that, but I hope you all have enjoyed this podcast as much as I have. Don't forget friends. You can listen to our show any time of the day or night. We put out a new show every Tuesday. And remember, my friends, you are not alone.

spk_5:   26:13
Thank you again for joining us this week Way Hope you have been inspired on Empowered to become an advocate for the congenital heart defect community. Heart to heart with Anna with your host and Dworsky can be heard every Tuesday at 12 noon eastern time.