Heart to Heart with Anna

Navigating the Journey of Parenting Children with Autism and Congenital Heart Defects: A Heartfelt Conversation and Advocacy

July 04, 2023 Melanie Letzer and Kelly Blumenthal Season 18 Episode 425
Navigating the Journey of Parenting Children with Autism and Congenital Heart Defects: A Heartfelt Conversation and Advocacy
Heart to Heart with Anna
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Heart to Heart with Anna
Navigating the Journey of Parenting Children with Autism and Congenital Heart Defects: A Heartfelt Conversation and Advocacy
Jul 04, 2023 Season 18 Episode 425
Melanie Letzer and Kelly Blumenthal

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As a heart mom myself, I know firsthand the unique challenges that come with raising a child with both a congenital heart defect and autism. That's why I invited Melanie Letzer and Kelly Blumenthal to join me for a candid conversation about their experiences navigating this complex journey. Together, we discuss the importance of trusting your instincts, seeking early intervention, and finding the right support system for your family.

In this heartfelt episode, we explore the challenges of getting a diagnosis and the critical role of having an IEP in place to support our children. We share our experiences with ABA therapy during the pandemic and how it has helped us better understand our children's behavior. We also discuss the importance of connecting with other parents for emotional and practical support, and how tenacity and a willingness to try different approaches are essential when it comes to finding the right program for your child.

Our journey as parents has shown us the power of advocacy within the congenital heart community. Throughout this episode, we emphasize the need for early intervention, support, and utilizing trusted medical resources to provide the best help for our children. By sharing our experiences, we hope to inspire and empower you to become an advocate for the congenital heart community, and ensure that our neurologically and cardiac-challenged children receive the care and attention they deserve.

We appreciate it when people support Hearts Unite the Globe podcasts. Thank you to our newest supporters -- Annie Ulchak (Patreon) and Judy Miller (Buzzsprout)!

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As a heart mom myself, I know firsthand the unique challenges that come with raising a child with both a congenital heart defect and autism. That's why I invited Melanie Letzer and Kelly Blumenthal to join me for a candid conversation about their experiences navigating this complex journey. Together, we discuss the importance of trusting your instincts, seeking early intervention, and finding the right support system for your family.

In this heartfelt episode, we explore the challenges of getting a diagnosis and the critical role of having an IEP in place to support our children. We share our experiences with ABA therapy during the pandemic and how it has helped us better understand our children's behavior. We also discuss the importance of connecting with other parents for emotional and practical support, and how tenacity and a willingness to try different approaches are essential when it comes to finding the right program for your child.

Our journey as parents has shown us the power of advocacy within the congenital heart community. Throughout this episode, we emphasize the need for early intervention, support, and utilizing trusted medical resources to provide the best help for our children. By sharing our experiences, we hope to inspire and empower you to become an advocate for the congenital heart community, and ensure that our neurologically and cardiac-challenged children receive the care and attention they deserve.

We appreciate it when people support Hearts Unite the Globe podcasts. Thank you to our newest supporters -- Annie Ulchak (Patreon) and Judy Miller (Buzzsprout)!

& so much more
A bi-monthly podcast where we share the stories of our Caregivers, patients and...

Listen on: Apple Podcasts   Spotify

Support the Show.

Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

Social Media Pages:

Apple Podcasts
Facebook
Instagram
MeWe
Twitter
YouTube
Website

Kelly Blumenthal:

I said, is he going to die of autism? And they said, "no And I said, okay, then I'm just grateful that I can get help for him-- that he needs and I'm ready to do whatever you all tell me that needs to happen."

Anna Jaworski:

What happens when a family living with congenital heart defects also has to deal with autism? How common is it for autism to occur in a CHC community? What special considerations need to be made for children with autism if they also have a congenital heart condition? Welcome to "Heart to Heart with Anna. I am Anna Jaworski and your host. I'm also a heart mom to an adult who was born with a single ventricle heart and is 28 years old. That's the reason I am the host of your program.

Anna Jaworski:

Today's episode is called When Autism Hits a Family Living with Congenital Heart Conditions And our guests are heart moms, Melanie Letzer and Kelly Blumenthal. My loyal listeners will remember Melanie from the episode she did entitled, "Juggling Tetrology of Fallot and Epilepsy." We'll talk with Melanie in the first segment and then we'll talk with Kelly in the second segment, and then I'll have all of us together in the studio during the third segment. Melanie Lebser is a heart mom to Nicholas, frederick and Alexandra. Both Nicholas and Frederick were born with Tetrology of Fallot and Alexandra was born heart healthy. As we discussed in the previous episode of Heart to Heart Within, nicholas has epilepsy. Today we're going to talk to Melanie about Nicholas's newest diagnosis, autism. I will meet Kelly in the second segment. Welcome to Heart, to Heart Within Melanie.

Melanie Letzer:

Thank you for having me, Anna.

Anna Jaworski:

Oh, I'm so happy to have you back. It's always fun to talk to you, Melanie. Thank you, thank you. Let's talk about Nicholas's most recent diagnosis. He was diagnosed with autism. Can you tell me about when you were concerned he may have autism and what your journey has been like to get the diagnosis?

Melanie Letzer:

I always knew there was something a little different with Nicholas. Being the third child, I know the typical development of speech and he was very delayed. Traditional speech therapy was really not working with him. He had difficulty in preschool. He would not stand in line the way he should when they were called to circle. He always needed some extra help. Transitions were not easy with him And I did ask as pediatrician what do you think? do you think it could be autism? He's like he has too good of eye contact. I've never seen a child with a good eye contact with autism. I did ask our speech therapist. She didn't think so.

Anna Jaworski:

You knew in your heart that he did.

Melanie Letzer:

I knew there was something different. After he had the three seizures We ended up going to a different neurologist and she was the one that said, have you been looked at for autism? And at the time in my heart, i wasn't ready to accept a new diagnosis, so I didn't even want to go through any of the testing.

Melanie Letzer:

So we ended up going to the neuropsych and I did not want the test at that time And I wanted to see was there anything else glaring.

Melanie Letzer:

She thought he could be autistic And unfortunately, with COVID there was a huge wait because we didn't get it at the neuropsych appointment. We had to wait a long time And during that long time we ended up moving out of state to Ohio And once we were in Ohio we were able to get in quickly with a autism school that also does the ADOS, which gives the diagnosis of autism, and once we were there obviously it was within a month of us moving He was diagnosed with autism. And Ohio does things a little differently as far as they give you an autism scholarship towards your education, depending on if you want to do private or homeschool, and so through the scholarship or through your county where you live, you can get your therapies also paid for And then the tutor or however you're doing your education, if you want to do private schools, if you need an intervention aid, they do that. It's given us more options in Ohio than we had, unfortunately, where we were living, just a different path we could take.

Anna Jaworski:

Wow, that sounds like that was so much to go through. But first of all, moving is hard enough. But then, when you're moving and you have a trial of special needs and you have to go through all of that testing, that must have been really difficult for you, Melanie.

Melanie Letzer:

Actually the way they did it, it was a three hour test And then they basically told me what they thought And then I could go back later for the actual report and different people attended that meeting. But it was stressful. But in my heart of hearts, as a heart mom, we're used to doing research And so I definitely researched everything that I could.

Melanie Letzer:

I did actually reach out to Kelly at one point and we talked a little bit about it to just getting her perspective. But I used all my resources and there's another heart mom that I had reached out to as well that her son's autistic. So it was definitely using social media to figure out what people did and just getting some positive stories helped me with the whole process.

Anna Jaworski:

I love that And, like me, you decided to homeschool. It sounds like your school district is way more supportive than my school district was with homeschooling your child.

Melanie Letzer:

We actually had homeschooled Nicholas pretty much after preschool did not work. We had COVID hit. He was in the public school for a short time, covid hit, and that's when we're like this is crazy, trying to do it online. So I started homeschooling using the Seaton program out of Virginia and we've used that. Basically, it gives you everything you need and then you can modify to your child's ability and that's worked for us so far. Also, we utilized our scholarship to use a tutoring company in Cleveland. They use their own kind of curriculum for extra help with reading, comprehension and math. I'm still using the Seaton program, but it's like additional learning for him from someone other than mom.

Anna Jaworski:

That sounds great.

Melanie Letzer:

Yeah, so far it's working really well and I connected with a group of parents that do their own homeschooling group a co-app. I tag along on Fridays to their social group. It's like they need social interaction. That's critical.

Anna Jaworski:

It's critical for any kid, but especially for a kid with autism. So what advice would you give to another heart family if their heart kid is also diagnosed with autism?

Melanie Letzer:

I would say go with your gut. Don't stuck in guess yourself if you have a feeling in your heart that something's not right. You know your child best. and also, don't let the diagnosis dictate how you do things. You're the parent. You know your child better than anybody. So, however you feel they're going to do the best, go that route and reach out to people and find your group, because that's so important I feel. Being a heart mom is hard enough, but adding another layer, such as autism, can be very isolating and you need your people.

Anna Jaworski:

And Tonight Forever by the Baby Blue Sound Collective. I think what I love so much about this CD is that some of the songs were inspired by the patients.

Speaker 4:

Many listeners will understand many of the different songs and what they've been inspired by. Our new album will be available on iTunes, Amazoncom, Spotify.

Anna Jaworski:

I love the fact that the proceeds from this CD are actually going to help those with congenital heart effects.

Speaker 4:

Enjoy the music.

Anna Jaworski:

Home Tonight Forever. This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. The opinions expressed in the podcast are not those of Heart should unite the globe, but of the hosts and guests, and are intended to spark discussion about issues pertaining to congenital heart disease or bereavement.

Anna Jaworski:

Kelly Blumenthal is mom to two sons, mason and Finn. Finn is a youngster with some complex medical conditions, including total anomalous pulmonary venous return, complete AV canal defect, hetero-taxi pulmonary stenosis and arrhythmia. She and her family have been advocates in the congenital heart community since the 1960s. She has worked with the American Heart Association and other nonprofits. Most of you probably know her from TikTok or Instagram or on Facebook where she has prayers for Finn. So welcome to Heart to Heart with Anna Kelly.

Kelly Blumenthal:

Thank you so much for having me today.

Anna Jaworski:

Oh, I'm so excited to be talking to you. When Melanie told me about you, i said oh, we have to do a show with Kelly And she said, absolutely. So this is really excited for me to meet the famous Kelly.

Kelly Blumenthal:

Oh, my goodness, what an honor. It sounds like I have big shoes to fill.

Anna Jaworski:

I am so impressed with how long your family has been advocating for the congenital heart community. So let's start by finding out a little bit more about Finn. Can you tell me when he was diagnosed with autism and how all of that happened?

Kelly Blumenthal:

Of course, finn was diagnosed with autism the end of his preschool year. We are currently in 2023 and he is in second grade, so preschool was a couple of years ago And that was when he received the diagnosis at a developmental pediatrician appointment in Philadelphia.

Anna Jaworski:

Okay, so you live in a big city. That's always a huge advantage. A filly is phenomenal with the resources that they have available for the children, isn't it?

Kelly Blumenthal:

It is. I actually travel from pretty far away to go to the Children's Hospital of Philadelphia. I'm in Stafford Virginia but it is worth every mile and every minute to get there.

Anna Jaworski:

That's good to hear. It's always nice when you have a place that's within driving distance, especially when you have an excellent reputation like Chocteau's. So Melanie was telling us how she has decided to homeschool her child, but Finn is in public school, so can you tell us what kind of support Finn has regarding his heart condition and autism?

Kelly Blumenthal:

Absolutely. We are very blessed to have a lot of support locally, literally around the corner, to the point where two years ago still knowing that we needed the support, when we needed to get a little more space with our home, after 10 years of living in our past home, we only moved a couple streets over just because we were that passionate about staying where we were. Our elementary school is absolutely phenomenal. The school nurse has a son with CHD, so that is extremely helpful. Well, that was very.

Kelly Blumenthal:

Yes, it is very helpful And that has just given a lot of relief to know that she knows not just the medical side of things but the empathetic side of it and where we're coming from. I never really have to feel with the actual school like I need to fight, as we all feel Sometimes with the county, the whole county as a whole. It's a little bit challenging on certain things, but the actual school and the school nurse is absolutely phenomenal. We have that support system in place at the school. He has an IEP.

Kelly Blumenthal:

We started out with a 504. It was COVID times to get him something in place very quickly to protect him, but we weren't too worried at the time because school was not in person at that time. So we knew that eventually we could get that IEP and we were lucky with the timing. The stars aligned And by the time he was actually physically in school when some of the restrictions lifted, we did have that full IEP in place. So he has all of his medical plans. We have had seizure situations as well. He is lucky that we were finally able to determine a cause for his seizures in 2017. We realized that they were anesthesia related.

Kelly Blumenthal:

Knock on wood He has not Yes, and he has been under anesthesia 18 times, so it was very difficult to figure out that out.

Anna Jaworski:

Yeah. I've never heard this before, Kelly. Okay, so you're educating me about something I've never heard of before. So when you say that the seizures were anesthesia related, does that mean he only sees after having had a procedure?

Kelly Blumenthal:

Yes, we noticed that when he was put under anesthesia not for something very quick like a hernia repair, but something more time consuming, such as a heart catheterization or an open heart surgery It could be as long as two days afterwards, or it could be as short as coming out of anesthesia that he would have what they referred to as non responsive seizures, where you would be holding him or looking at him and he would be acting completely normal And then all of a sudden he would go blank and he would also stop breathing.

Kelly Blumenthal:

And when you have a yes, when you have a cardiac kid, it's hard to figure out. If it's heart, lungs, brain. It's very difficult to figure that out And he was having lots of surgeries at the time when he was younger, so it was very difficult to narrow down with that many variables. But as he got older, his surgeries were spread apart a lot, with more time in between, and that's when we were finally able to determine in 2017 that it was anesthesia related, based on looking back at the timeline in the notes. And he does have rescue seizure medication at school and at home, just in case we're ever proven wrong about this theory. But so far he's been able to have the seizures treated in the moment with Ativan at the hospital, which is very nice and just brings him to a calm. But, as Melanie stated, when you have a medical kid with a lot of things going on and a lot of variables, it's really challenging to determine if something is behavioral when they get older or if it's medical, especially during pandemic times.

Kelly Blumenthal:

Yeah, the pandemic complicated everything It did And we were lucky to get the diagnosis right right before pandemic, but we didn't start the sort of support for the autism specifically until the actual pandemic.

Kelly Blumenthal:

We needed to have ABA therapy and there was a very long wait for that And they were very limited on how they could do the ABA during the pandemic.

Kelly Blumenthal:

So once we were able to finally get that in place, aba was extremely helpful for us.

Kelly Blumenthal:

It was done in our home several days a week for several hours And a lot of concerns that I had bringing him to his children's hospital, to his neurologist ended up being behavioral with autism, when I was worried he was starting to have the seizures again or some type of neurological ticks. He did have a stroke a couple of years ago So that was another concern that this was possibly a long term effect from that. But the ABA therapy was able to help educate me on autism and that a lot of the behavioral things that I was seeing were luckily behavioral related and not some medical thing coming about again. He was doing a lot of stemming and he would go through stages for about three or five months, sticking to one particular stem at a time, some of them dangerous stems, some of them just more repetitive, but some of them, especially during a pandemic, not the best type of stemming. He became obsessed at one point with touching his nose on everything, including water fountains, desks, shopping carts?

Melanie Letzer:

Oh no.

Kelly Blumenthal:

Yes, yeah, that would be bad. How we knew that we needed to see a developmental pediatrician to get some type of behavioral diagnosis. The autism was not on the radar for me. I have several connections, whether it be neighborhood, school, fellow friends or even heart families whose children have autism, but I know that it is a very wide spectrum. The connection that I had in person were on the more severe side and more nonverbal, so I was not educated on the some people call it high functioning or lower end And once I was educated on this and was able to get him the support that he needed, it has made a massive change in not just his life but mainly his education at school And he's able to have certain things watched there.

Kelly Blumenthal:

How all of this started was we were at a neurology appointment when he was very young, toddler, and he could not sit still And this was pre-pandemic. And I had just always thought, since he spent so much time in the hospital, that it was finally time for him to be free And he was doing so well from this most recent procedure that he was just making up for lost time And he hadn't been given the opportunity My older son had of a more structured schedule and lifestyle. So I just assumed that he was making up for lost time. But the neurologist noticed that he could not sit still and had one of his therapists take him for a walk out in the hall. And he came back with a handful of things that you look at a hallway in a hospital and you think it's clean. And somehow he found a bolt, a screw, a pen cap And he was trying to put it all in his mouth and swallow it.

Kelly Blumenthal:

And they asked me have you noticed any of this behavior at home? And I said yes, he has a feeding tube and he won't eat a cupcake, but he will eat leaves off of a tree, he will put mulch in his mouth and things of that nature. And I mentioned that he had recently been in the hospital for swallowing coins And they said I think he's got some behavioral concerns. I think you need to see developmental pediatrics here. The wait was very long, it was 11 months.

Anna Jaworski:

Oh my gosh. 11 months And somebody who's swallowing coins. that's potentially dangerous. A coin could get lodged in his throat. That could kill him?

Kelly Blumenthal:

Yes, and this particular coin did get lodged in his throat. He ended up swallowing several, so the x-ray showed that it was one quarter but it ended up being multiple coins stacked And he was able to breathe And the process of getting the x-ray it went down And luckily no surgery was needed. But, like you mentioned, it was very scary because since he has had 18 procedures, his airway very narrowed because of swelling and has a lot of scar tissue. So we definitely wanted to get that underway. I was expected to have a diagnosis from developmental pediatrics of the pica, which is putting all the things in his mouth sensory processing disorder, possibly and for sure the ADHD.

Kelly Blumenthal:

I was surprised because it wasn't on my radar because of my example, of the experiences that I had with neighbors, friends, of nonverbal autism diagnosis for the autism diagnosis to come back. But when they told me what they noticed in his testing, all of a sudden everything made sense. He had a lot of pragmatic speech. That again a kid with that much medical challenge you just chalk up to. He hasn't had the same life as his brother if to compare, and he's making up for lost time and he's just different. He has PTSD. So having that diagnosis has been really educational.

Kelly Blumenthal:

That was the last thing on the list that they told me on the phone for the diagnosis, because it wasn't unexpected, and I remember them saying now, what I'm about to tell you is going to be really hard, and I paused and just said okay, i'm ready. And they said he does have an autism diagnosis And I said is he going to die of autism? And they said no And I said okay, then I'm just grateful that I can get help for him that he needs And I'm ready to do whatever you all tell me that needs to happen.

Speaker 4:

Anna Jaworski has written several books to empower the congenital heart defect, or CHD, community. These books can be found at amazoncom or at her website, wwwbabyheartspresscom. Her best seller is The Heart of a Mother, an anthology of stories written by women for women in the CHD community, and as other books, my Brother Needs an Operation, the Heart of a Father and Hypoplastic Left Heart Syndrome. A handbook for parents will help you understand that you are not alone. Visit babyheartspresscom to find out more.

HUG Information:

Heart to Heart with Anna is a presentation of Hearts Unite the Globe and is part of the Hugg Podcast Network. Hearts Unite the Globe is a non-profit organization devoted to providing resources to the congenital heart defect community to uplift, empower and enrich the lives of our community members. If you would like access to free resources pertaining to the CHD community, please visit our website at wwwcongenitalheartdefectscom for information about CHD, the hospitals that treat children with CHD, summer camps for CHD survivors and much, much more.

Anna Jaworski:

This has been such an informative show with so many acronyms thrown out there. So for those of you who maybe don't know what some of them were, the IEP is the Individualized Education Plan and that's what you get when you are diagnosed with some kind of special need and they make a special plan for you to address your individual child's needs, and that's done in a public school. The 504 plan usually involves medical information or it goes hand in hand with the IEP, but again, it's for helping your child to be successful in school. And ABA stands for Applied Behavior Analysis. So there's ABA therapy, which addresses behavior. So it's not something that you're born with, it's just behavior that you have and hopefully with ABA therapy we can train children out of some of those behaviors. And we'll get into a little bit more later, but I think those are the three.

Anna Jaworski:

oh, and I don't remember what PICA stands for, but I do remember, as a special ed teacher, kids who would eat paint and, like she was saying, they would swallow coins, things that are not food that you do not want your child to be eating. PICA is a condition where children are eating non-food items and that needs to be addressed as well, especially for our herd kiddos. We know there's a lot of misinformation on the internet, especially regarding medical conditions, and you have to be so careful in what you believe and what you act on. Melanie, let's start by talking to you about some of the myths and non-traditional treatments that you've come across while you were doing the expansive amount of research I know you were doing on autism.

Melanie Letzer:

I had just read. Recently there was a group on Facebook that obviously we all want the best for our children and so we're desperate to get rid of some of these behaviors. And they were actually putting ivermectin on the bottom of their feet and I don't know if they thought that they were toxins, but they felt that this ivermectin was going to help alleviate some of these behaviors their children had.

Anna Jaworski:

Wow, wait a minute. I know for a fact this is a drug that has been recommended by some doctors to help with COVID, but it's one that you ingest, it's not one that you put on the bottom of your feet, isn't that right, melanie?

Melanie Letzer:

Right. I think some people are just so desperate to quote, unquote, fix the issue. Really there's no fix. You just teach them ways to make the most out of their life or it doesn't go away. You're autistic into adulthood you're in tired of life.

Anna Jaworski:

I studied speech pathology and we used to say that if you're a stutterer, you'll always be a stutterer. But with speech therapy we can help you to learn to compensate. But it's not like the stuttering goes away. It's the same kind of thing. So I guess with autism, once you have autism, you always have autism but we can give them coping mechanisms so that they can function better in society. Ok, go easy. Wow, topical ivermectin, that's a new one for me, melanie, wow, okay, friends.

Anna Jaworski:

So please double check with your doctors before you do anything. Please do not use ivermectin as a topical treatment for your children with autism. This was an example of a myth or not. Traditional treatment that's out there and it is not being advocated by us. On hard to hurt with anise. So, wow, there are a lot of myths out there. And how do you know what?

Melanie Letzer:

to trust, i think, like Kelly was saying, trusted institutions like CHOP, going to respected children's hospitals We go to Cincinnati Children's and they have a wonderful neurology department. I believe that just going to places that are well known for advice Facebook, i think can give you, as the mother, emotional support and some ideas and knowing that, no, you're not losing your mind, that this is hard and it's okay and it does get better and you will get through it. I think, using social media in that respect, rather than doing everything that people are doing, just taking it with a grain of salt.

Anna Jaworski:

Basically, Yeah, i agree, but also I will say that there's not one size fits all program that's going to work with all children. So sometimes you do have to think outside the box and sometimes you do have to try something different. And I think with some kids because I did work with a special education population when I was a teacher in a public schools sometimes kids have to see something two or three or hear something two or three or four different ways before finally it clicks and they get it, and it's hard to say which way was the way that was most successful. I don't know. I kept trying all different things until I found something that works, and I think that's the one thing I admire about so many special teachers and parents and children with special needs is you have to be tenacious, you have to stick with it. You can't give up.

Anna Jaworski:

If one program is not working, it's okay to try a different program. Like you were saying, melanie, you have a supplemental program with your curriculum. I was a homeschool mom. I had lots of supplemental materials. I didn't use just one curriculum with my kids and my kids were not special ed, but I just believe that it helps any child learn better to have multiple curriculum available And to know what type of learner your child is.

Melanie Letzer:

Nicholas is a visual learner. He's an active learner. So the tutoring company that we use, out of Cleveland the head of it, basically said that not every child is a brick and mortar child, and that made me feel much better because I believe in society. homeschool is definitely more common than it used to be, but it's still not, i believe, as respected maybe in all domains. And so just knowing how you feel your child is going to best succeed, going with your gut whether it is public school, private school, homeschool just knowing your child the best and going with what you and your loved ones believe, your child will become the best version of who he can be or she can be, absolutely.

Anna Jaworski:

I agree 100%, Kelly. you and your husband have been really big advocates for the congelato heart community. Can you tell me if there's an advocacy group for the congelato heart community dealing with autism?

Kelly Blumenthal:

I personally haven't found one, but maybe Melanie can attest to a specific one. I have had a lot of success with myself connecting with other moms on an individual basis, such as Melanie, but then also connecting in groups that help me with things like paperwork in general for different things in the state of Virginia that could help with services or knowing what rights you have or waivers you have and things like that sort of more of an umbrella type helping with a system like that.

Kelly Blumenthal:

But with regards to the autism specifically and something even more specific than that, such as CHD with autism, and even, if you want to go down even more specific, melanie and I have cases where our children are the top 25% of most severe CHD cases. So that adds a little bit more complexity and more variables, and then again adding the behavioral as well. So I would definitely say that myself I have had the most success just connecting with other moms directly that are similar to myself And again, not to keep bringing up the pandemic, but the laws and paperwork that have changed significantly back and forth because of the pandemic And Melanie and I both getting diagnoses around that time. It's been very helpful to connect.

Kelly Blumenthal:

In that, i also think that for us, our school has been a great resource because they have a lot of families that they can't necessarily immediately connect us because of privacy In general. You start to eventually figure it out from going to events but talking to the special education teachers there and his own teacher he's a completely different child when I'm not there And comparing those things, seeing the things that are consistent at home and at school, are really helpful versus comparing what's only at home and what's at school, because the things that are isolated just at school or just at home. We know he deep down has the capability of turning it off or on because he does at home or at school or reverse, but the ones that are consistent, those are the things that I really try to help with therapies such as ABA and get him back on track and go from there. But those have definitely been the greatest resources for myself. But I do feel like it is a very small group but very mighty of the.

Anna Jaworski:

It is a small group, but I feel like we need to band together. I cannot believe how fast this time has gone. We only have time for one more question, but I'd like to ask both of you this same question, and that is I believe that autism is a neurological disorder and our children are at risk for neurological problems. Anyway, because they've gone through open heart procedures and they've been put on a heart-loom machine and they have dealt with anesthesia And, as we just heard recently, anesthesia can be responsible for seizures, which I had no idea it was that bad, but it can be, and it's really scary. So let's talk about what parents can do to help their children neurologically, and especially our neurologically challenged children, when they have a congenital heart defect on top of that. So, melanie, i'm going to start with you.

Melanie Letzer:

I think it's paramount for parents to make sure they utilize the instance and tabular programs. I know CHOP has a great art and neurological developmental center. I think that's where Kelly had gone with SIN and utilizing I think it's called the Neurocardiac program. But utilizing those early diagnostic areas that are available I think is key to maximizing early intervention. I just had read recently that through the ConcraneCHD website that basically kids with congenital heart defects are actually, i think, 32 times more likely than a typical child to be diagnosed as autistic. So it's definitely each ConcraneCHD just had that on their social media. So I believe that it is a known risk. But our kids because Kelly was saying all the other issues sometimes we don't know, is it attention deficit, those kind of things.

Anna Jaworski:

Sure, there are a lot of questions. So as soon as you're a heart mom, you begin wondering if any little problem you see is that heart related. Is that heart related? Because exactly That's the potentially fatal problem, exactly. It's a heart problem and it's easy to attribute things which may not necessarily be attributable to you, but they may, or they may be exacerbated by it. So, Kelly, can you tell us how you can help parents who have children with both neurologically challenged and cardiac challenged children?

Kelly Blumenthal:

Absolutely So. First of all, i absolutely echo what Melanie said with the medical resources, and I also just want to add that a lot of parents are so self-conscious about asking questions. Do not stop asking questions, i don't care if you're emailing them every single day.

Kelly Blumenthal:

You have to do that when there are this many variables, and that is very important. Do not stop asking questions. I have also found that consistency is key For me personally, since I'm so far away from Philadelphia. It would not behoove my child to have a neurologist in Virginia, a urologist down south and then a cardiologist up north. I know it's a long drive, but keeping all of the doctors in the same place has been extremely helpful for me, because there are so many things going on, like you said, neurological and cardiac and all of those doctors need to talk, and it's a lot simpler for myself and best interests for my kid and less hands in the pot if we're not hospital hopping and we're all in the same place.

Kelly Blumenthal:

And then, finally, the biggest thing that has helped me in this entire journey synchronizing the behavioral and medical diagnosis is documenting everything, whether that's a notebook, texting myself, sending videos to myself, times, dates, what was going around him, when it happens, because, like I mentioned, i blew a lot of this stuff off for a long time to. Oh, he's making up for lost time and we're busy parents and we're trying to remember all of these medications and surgeries and therapies. When they ask me how often would you say he does this tick per day, i don't know, but if I write it down and I keep a log of it, maybe it'll help me later, or maybe it won't, but at least I'll find peace knowing that I have it And that is very helpful for the doctors to know. Do we need to sedate for number 19 procedure to do an MRI, or is this a behavioral tick and it's okay And that saves him medication, another variable and potential procedures, if I have that documentation.

Anna Jaworski:

I love it. That is so valuable. I agree with every single thing you said. You girls are amazing. Thank you so much for coming on the program today, kelly, it's so lovely to meet you. Thank you for having me, it has been so enlightening. And Melanie, thank you for suggesting that we do this episode. I can see where there is so much need for it. Thanks for coming back on the program today.

Melanie Letzer:

Thank you again. It was a pleasure.

Anna Jaworski:

I really enjoyed learning all this. I'm so sorry for everything that you've had to go through And I really hope that this episode will help other members of the CHD community who are also seeing that their children have neurological consequences or are neurologically challenged. Thank you for listening to the program today, my friends. That does conclude this episode of Heart to Heart with Anna. I hope you found it helpful. If you have any questions about the show, please send them to me on the hug website That's heartuniteglobeorg, and I'll put a link in the show notes. And remember, my friends, you are not alone.

HUG Information:

Thank you again for joining us this week. We hope you have become inspired and empowered to become an advocate for the congenital heart community. Heart to Heart with Anna, with your host, anna Jaworski, can be heard at any time, wherever you get your podcasts. A new episode is released every Tuesday from Noon Eastern Time.

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