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Kari Imperatore

Kari Imperatore, SYNGAP1 Mom, CFC Coordinator, and Navy Vet, talks about Trajan’s genetic testing, the importance of trying, and the best and worst of SYNGAP1 while watching for whales!

Show Notes

New co-host Jo Ashline jumps right in with a touching, insightful conversation with Kari, full of uplifting and challenging experiences and advice, connecting the entire SYNGAP1 community.

If you liked this episode, please give our podcast 5 stars! All episodes are also available at ⁠⁠⁠⁠cureSYNGAP1.org/Stories⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠.

Trajan’s Warrior Story

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SRF & SYNGAP1 Info:⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

SYNGAP1 Studies and Trials:⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

More Links:

Connect with SRF (@cureSYNGAP1):

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Comments: ⁠⁠⁠⁠⁠⁠⁠ed@cureSYNGAP1.org⁠⁠⁠⁠⁠⁠⁠

Music: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠In the Forest… by Lesfm from Pixabay

Episode 037 SYNGAP1 Stories, September 3, 2025

#SYNGAP1StoriesTrajan #Syngap #SYNGAP1 #CureSYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp37 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Family #CureSyngap1Conf #SYNGAP1Siblings #Caregiver #Behavior #Communication #SelfHelp #Volunteer #Conf25 #Therapy #CFC #NavyVeteran #Veteran #WhaleWatching

Below is a transcript from the audio:

Kari Imperatore

Triton has no bubble. I commonly say he finds good people. And this… woman was no exception. She was amazing. Jumped into her space, into her arms, and I almost had a heart attack because he just violated some lady’s space. That can go in a multitude of different ways. But thankfully, the woman said, “Thank you, little boy.” I needed to snuggle. I was really sad. 

Jo Ashline

And that just, that moment, I mean, here come the tears again. 

Kari Imperatore

Yeah.

Jo Ashline

Right? 

Kari Imperatore

Gosh. And he did. You know, he sat with the woman. They had a lovely time, you know. He looked at the horseshoe crab, she looked at the horseshoe crab, we all talked to the horseshoe crab. Um, it was, it was really wonderful and I, I almost wonder, like, I don’t know if there’s a reason for SYNGAP or a reason for special needs kiddos, but they just connect with some people over other people for some… reason and he was just supposed to connect with this woman, I believe that. So bring on the best of times for SYNGAP, because our kids do make a difference in other people’s lives and we don’t always see it coming.

Jo Ashline

Hi there, welcome to SYNGAP1 Stories, a podcast dedicated to all things SYNGAP1 and rare disease. My name is Jo Ashline, and I’m your host for this episode. As the parent of Andrew, an adult child with SYNGAP1-related disorders, I know how important it is for our families to feel seen and heard. And for providers, educators, and researchers to get a glimpse into our lives so they may better serve our loved ones. I’m so grateful for the opportunity to connect with our beautiful and growing community and share stories from caregivers, siblings, and professionals that will remind us that we aren’t alone. Our children matter. And hope isn’t just on the horizon. It’s in all of us.

Hi, everyone. Welcome to SYNGAP Stories. My name is Jo Ashline. I am the new co-host of this amazing podcast. And I am thrilled to introduce my very first guest. Mom and naval officer, an incredible human all around, Kari Imperatore. She is mom to Trajan, nine years old, who was fairly recently diagnosed with SYNGAP1. Welcome to the show, Kari.

Kari Imperatore

Hi, Jo. Thanks so much. I really appreciate it. Yep, you’re right. Trajan was diagnosed about 13 months ago, so this is a new journey for us.

Jo Ashline

It is a new journey for you, which I know comes with a lot of mixed, complicated, complex feelings, obviously. And yet here you are already doing the work. You’ve joined SRF. We are so thrilled to have you and your family here. Because, you know, the truth is, no one wants to join a foundation like this for personal reasons, right? It means that you are living through SYNGAP. But the silver lining is that you found such an incredible community and we’re so lucky to have you a part of it now.

Kari Imperatore

Yeah, I often say it was a blessing and a curse. You know, obviously Trajan’s diagnoses did not start when we found SYNGAP, but they had been with him pretty much from the start of birth. We noticed that there were just different things with Trajan. I was very, very thankful for the diagnosis, if you can be thankful for a SYNGAP diagnosis, because it brought us to a home and a community of resources. And it did feel like all of the pieces fell into place when Trajan was diagnosed with SYNGAP.

Jo Ashline

That was so beautifully articulated. Thank you for that. I think that you’re right. It is mixed emotions, right? I think you are able to be grateful for finding what you and I consider to be home now, right—the SYNGAP community—mentioned that too recently, and also feel despair that can come from knowing what your child is up against and facing. So Trajan, as I mentioned, is nine. Right. So he was about eight or right on the cusp of turning eight when he was diagnosed.

Kari Imperatore

Yes, that is correct. It was actually 1 June 2024, so he was about 8 1/2 when he was diagnosed.

Jo Ashline

So, like you said, it’s not like he woke up at that point and suddenly exhibited challenges and symptoms related to SYNGAP. You had had years, several years already, likely with some of the challenges that he is facing each day, right? And your family is facing each day. So I’m sure there was again, that despair, but also maybe a relief that you had a name for what was going on.

Kari Imperatore

It was actually kind of a crazy journey to get the diagnosis. Trajan and I and the family had been genetically tested before in 2017, and they didn’t catch it for one reason or another. Then we were looking at changing his seizure medicine and playing with a couple of different options so his neurologist suggested this semi-new genetic test, and that’s how we found his diagnosis. I have to confess, after I got the diagnosis, I just sat on it for about a month. Like, I just… You know, it was a lot to process. And I was sitting with, like, a special needs support group um and they like really pushed me. They’re like, absolutely not, dig into that report. You need to take a good look at this and you know, see what community this brings. So I’m very very thankful for those group of ladies. For obviously, I would have looked at it eventually, but um, to understanding more of what SYNGAP was, and that’s when I found all of the personal stories and the videos online that SRF puts out, and it was just like Trajan had found other people just like him.

Jo Ashline

Right? Yeah and I think no one can blame you for sitting on that report. I mean, when we remove ourselves from the emotional part of things, which is very hard to do, and really impossible as a parent—but on its face, it’s not like the report was changing your reality. Right? You were already living with SYNGAP. You just didn’t know. But at the same time, once you read it, you can’t unread it. And whatever it says and whatever it’s calling you to do or not do, that can be a really overwhelming feeling for us, right?

Kari Imperatore

Yeah, it was. It took a little while to peel back the onion. I think I watched, like, the family videos until, like, 2 a.m. one Tuesday night, like, and just kind of dug in. As soon as I found SRF, watched the family videos, understood that this was Trajan’s tribe, we were off and running with SYNGAP and SRF to find resources, participate in studies, and just understand what options there are for him.

Jo Ashline

Right. Yeah. And, you know, I know I briefly told you when we were first talking the other day, prepping for this episode, that Andrew is—my son, Andrew is 23. He was diagnosed at 16, but… Just like Trajan, he was living with all of the other, as I call them, a la carte diagnoses, such as the profound autism, the epilepsy, the speech and language impairments, the low tone. Sleepless nights, behavioral challenges, we just didn’t have an overarching diagnosis to really complete the picture, and so for us, at the late stage diagnosis at 16, felt more like a relief than anything else, because we were like, “We’re already in it neck deep.” Now we maybe have a direction. However, there was very limited information when we received the diagnosis, and it wasn’t until I think later that year that SRF came to be. And so now, when people come, the presence of SRF online and the ability to see these videos, listen to the podcasts, gain information about the conferences that are held every year. By the way, this year is in Atlanta, Georgia. Kari, are you planning on going?

Kari Imperatore

Heck yeah, I’ll be there. I wouldn’t miss it for the world.

Jo Ashline

There you go. So if you’re listening, definitely check out the website for more information about the upcoming conference in Atlanta, Georgia. Our first one was last year, and it was life-changing, really, to be there in person with all the SYNGAP families. So I really highly encourage anyone listening to consider making that happen for you and your family. Um, but you know, so I’m so glad to hear that. By the time Trajan was diagnosed, you had access to the phenomenal resources that the SRF community has been working so hard to build over the years since its inception.

Kari Imperatore

Yeah, it was amazing. And we’re not—we’re in central New Jersey. So it was—we have, I think, three other families that are in just our New Jersey county. And we’re about an hour and 20 minutes from Children’s Hospital of Philly, CHOP. So it was just so… so amazing to find and connect with other families locally that had SYNGAP and kind of understood Trajan’s journey.

Jo Ashline

Yes, yes. That’s so important. Speaking of community. You are in the Navy, right? And you are a Naval officer. I just want to take a moment to say thank you so much for your service to this beautiful country of ours. I imagine the Navy requires a lot of discipline, a lot of organization, and a lot of planning. And I’m curious how that juxtaposition with really the life of raising a child with SYNGAP sort of looks like for you, coming from this very… organized, for the most part, probably predictable daily life of a naval officer to parenting a child with SYNGAP, which can be very unpredictable.

Kari Imperatore

Oh, you know what? That’s a really good question. I don’t think I’d really compared the Navy to, you know, Trajan’s diagnosis. It’s prepared me in so many ways. And one, I’m just, thank you so much for your support. I love serving and I’ve been… you know, very thankful to serve for over 20 years at this point, so it’s absolutely amazing. I started my career as a Navy pilot and then I transitioned over to human resources when my aircraft retired. But, you know, as a pilot, we have checklists for everything. You know, you are very prepared. Um, you have a way to do things. So, I kind of think that, you know, the organizational skills have proven very applicable for Trajan’s diagnosis. Because, you know, as a parent of a special needs kid, like, there’s so much to do. There’s so many things that take up your time all over the place. You’re debating with insurance. You’re making sure that the school has, you know, the 50 documents that they need. You’re negotiating with daycare. Like, you’re ensuring that your child has the therapies that they need and keeping up with a multitude of… therapists and schedules. So, you know, those time management skills, organizational skills, and just a checklist making have served me well.

Jo Ashline

That is such an amazing insight into how, yes, it would absolutely benefit you to have that background and being so prepared. And I love your visual representation of a lot of what we have to do as those tentacles. That is so on point. And I’m just—I see this giant, you know, octopus and these tentacles come out because it really is like that. And it does feel that way. It’s never just one thing, is it?

Kari Imperatore

No, there’s something that always pops up. And you’re like, “Gosh darn it, I forgot his cup.” And he only uses the straw cup. And, you know, it’s those little things that are so important to our kids that we have to keep up with.

Jo Ashline

Absolutely. It’s so funny that you said straw and cup. Andrew’s the same way. He’s got these—there’s a type of cup, they’re called Take Aways, typically for toddlers. And his favorite and one and only is the ones from Cars, Disney Pixar Cars. And it’s got to have Cruz Ramirez on it. And they don’t sell it anymore unless it’s like on Etsy, where the profit margin is extreme for plastic cups, but we buy it in bulk when we can, when we see them, so we always have them in stock. And it’s got to be a green bendy plastic straw. I love the environment, I recycle, but this is one area where we are just like—if it makes Andrew happy, we will use green bendy straws.

Kari Imperatore

Yeah, sometimes you just have to be thankful that they found something that they love. Trajan, before SYNGAP, had what is called EoE, or Eosinophilic Esophagitis, which is… uh, kind of your esophagus gets an allergic reaction to different things. He went on a complete food refusal for years. Um, so understanding how important those specific feeding utensils are, especially when your kid does not eat anything, are a huge win when you find something that works.

Jo Ashline

That works, right? And it’s that perspective. And when I was interviewed for this podcast a few months ago, I mentioned, you know, my big thing is behavior is language. And when you mentioned this condition with Trajan’s esophagus, how telling that he refused to eat because food made him feel terrible. Right, and obviously he was having reactions and even something that we would consider enjoyable was likely not for him.

Kari Imperatore

Yeah. And, you know, food and eating—food is everywhere and eating is part of daily living, but it’s part of so many celebrations as well. So not being able to take part in those things was just tragic. That’s such a young part of his life, even before we found SYNGAP. Fast forward, thankfully, for Trajan, his EoE is very treatable after we located and identified his diagnosis. And he eats everything under the sun. He’s kind of a bougie eater these days. He loves lobster, crab. Everything Italian.

Jo Ashline

Oh, Trajan. You’ve got good taste. I love it. I will go out to eat with you any day, Trajan. That’s amazing. Let’s lobster it up. 

Kari Imperatore

You’re welcome. Anytime. 

Jo Ashline

I’m so glad to hear that. But when you mention this particular issue, that’s the thing about SYNGAP, right? There is such a spectrum to the variety of not just the symptoms within the diagnosis, but the intensity of those symptoms. Our Syngapians really do present all across the board. And I think it’s important that we make sure we’re representing everyone when we talk about SYNGAP and that some of our kids and their comorbidities can be extremely devastating to everyday quality of life. Are there other areas that you feel really do impact Trajan in a way that you want others to understand?

Kari Imperatore

I have to say, I am so very proud that Trajan is so resilient. He goes through so many changes in life on a daily basis. He has trouble with the transitions and moving from point A to point B, and I think part of that is the profound autism. I think part of that is his given abilities to communicate with ASL or sign language. He has about 50 functional signs, which we consistently work on. He’s also very fluent with his AAC device, like he can talk with his toes. We never encourage talking with his toes, but sometimes, you know, you have to pick your battles. 

Jo Ashline

Oh, yeah. 

Kari Imperatore

But even with those two augmentative communication strategies, it’s still hard for him to make his voice known and that is particularly evident when we are in new environments with new people and transiting from one place to another.

Jo Ashline

Yeah, that talking with his toes, though—that’s pretty amazing. You mentioned his AAC device. Could you let us know what it is that Trajan is using these days?

Kari Imperatore

Sure, he is TouchChat—it’s a whole different language for me as a parent. I didn’t know sign language. I downloaded the app. I didn’t know anything about augmentative communication devices. And I just have to give a shout-out to so many of the very patient speech and language pathologists out there that have been so patient with me in learning these things. Trajan can effectively communicate with his world because I’ve definitely needed help and I’ve asked for help, and so many people have just risen to the challenge.

Jo Ashline

I love that. I teach at a local community college here in SoCal. And a course that I teach every semester, several versions of it, is “Introduction to Children with Disabilities.” And I get a lot of speech and language, future speech and language pathologists. It’s like a… you know, it’s a required course that they take. What would you want to say to these students who are learning to be speech and language pathologists? Um, as far as your experience working with them, you said, you know, you want to thank them. What, what, how have they really impacted Trajan in your life?

Kari Imperatore

So finding the right therapist is very, very important because Syngapians are crafty and they are smart kiddos. And adults—like we have, we have several Syngapian adults. So they are just—they’re very—they’re very crafty kiddos and adults.

Kari Imperatore

So when you’re working with that population, sometimes you have to think outside of the box. They’re not going to sit and do the same activity three times like you wanted to do. Trajan has this thing in his mind that once he does it once, he complied with what you asked. He’s never going to do it again. He’s not going to demonstrate it three times like you need for a test or, you know, other validation in some of the therapy worlds. And also know that he has, you know, very outside of the box reinforcers. Our current SLP uses a fan because he loves fans and everything that goes fast and has wheels. So she commonly uses the shopping cart, which we crash around therapy.

Jo Ashline

Oh, my God. Brilliant.

Kari Imperatore

Super brilliant. And the office fan that they steal, which is kind of divided on those hot summer days, but very easy to acquire in December.

Jo Ashline

Yes, I’m sure.

Kari Imperatore

Yeah, but you do have to think outside of the box and understand your kiddo or your adult so that you have that correct reinforcer. Because it doesn’t always look the same and it can be very strange for a Syngapian.

Jo Ashline

You’re absolutely right, and I think you speak to how important it is for providers and educators, therapists, to see our kids for the individuals they are. Our kids are adult children for the individuals that they are. And really thinking outside the box should be the foundation of the work we do, right? With our kids and families. Because you’re right, every single person with SYNGAP is going to have their own nuances and preferences and passions. These are some of the hardest workers I’ve ever met in my life, right? Every day. They are going to school. They are doing therapy after school, before school. Every part of their day is challenging in some aspect. And really making it fun and bringing it to their level, seeing them for who they are is what’s going to facilitate their progress, right? And get them excited about doing the work. Otherwise… all we’re doing is really, it’s like I tell my students, reading it in a textbook is one thing, but when you’re out in the field and implementing it, you’ve got to be really prepared to pivot all the time. Because that’s what our kids are doing. They’re pivoting all day long, you know, whether towards you or away from you. There’s constant pivoting happening, right?

Kari Imperatore

Yeah, and I kind of think, when I consider life from Trajan’s viewpoint, it’s very inspiring. And sometimes it re-acclimates me and refocuses me in how important the pivot is and re-energizes me. Because sometimes I think that parents of Syngapians, we need a little pick-me-up every once in a while too.

Jo Ashline

I know. I know. They don’t make the kind of coffee we need, so we need to find that energy elsewhere, right? You’re absolutely right. The pivot and the perspective, right? A lot of alliteration here, but it’s so true. You mentioned Trajan loves fans and things that are mechanical and fast. We spoke the other day about bounce house blowers are like Andrew’s thing, right? Sometimes, if we’re just having a day and we need a reset, we drive around looking for bounce house blowers or we turn on our own that we’ve collected over the years. And you really learn to appreciate it, or he’s got a favorite garbage truck that he really likes, that doesn’t come to our neighborhood but comes to surrounding neighborhoods and he’ll watch them on YouTube. But what’s funny is when I’m alone somewhere in the community running errands and I see that garbage truck, it’s like an instant smile. Like, oh, there’s Andrew’s favorite garbage truck. Admire it for a minute, where without Andrew and his joyfulness at something so seemingly simple, I would miss the opportunity to be grateful about something so, I guess, typical, right? And boring, usually. But seeing it through their eyes and their perspective can really bring about that energy and joy you’re talking about that we so desperately need. On most days.

Kari Imperatore

Yeah, they definitely… Trajan definitely does allow me to see that every day in a whole different fashion, whether or not it’s that garbage truck or… you know, just understanding, you know, hey, I made it to the grocery store and we had a great time, you know, and we’re going to do this again tomorrow because sometimes we don’t have those days and that’s okay too, you know. I always say that we fail fast. We, you know, reassess and then we try it again.

Jo Ashline

Yeah, we fail fast. It’s so true, right? But that reassessment portion is what’s so important to our kids and the health of our family is to be willing to be flexible and to scrap the plans. Re-evaluate and try something else.

Kari Imperatore

And we do hard things because I acknowledge that a lot of the things that I asked Trajan to do are hard for him. Yep. It brings me down to a certain level, but it also, you know, I tell him and I tell everybody else, we do hard things because it is important for Trajan and is important for others to see Syngapians in the community and to work with them. So we give those daily things that may or may not be a challenge a go successfully and then sometimes unsuccessfully.

Jo Ashline

That’s a beautiful segue. I wanted to touch upon. You attended the gala—this was the fifth annual gala out in New Jersey this past weekend—and I had the pleasure of seeing a video of your speech that you gave with a corresponding video that you prepared. I’m going to ensure that we have some version of that available in the show notes so that our listeners can also enjoy what you spoke about, but you mentioned the importance of trying. And in that speech, you spoke about a trip, a little day trip you took on a boat. And I would love for you to share that story for our listeners, because I think it’s very important um in proving that point, that we have to try.

Kari Imperatore

Oh gosh, the whale watching story. 

Jo Ashline

Yes. The infamous whale watching story. 

Kari Imperatore

The whale watching story. I think that you can kind of recant a Syngapian adventure with anything. Like it can be going to the grocery store. It can be when we took a… flight to visit grandma and Trajan sat behind a bald man, and he just had to touch this bald man’s head like a hundred times. I was feeling that we were going to be an FAA incident. But thank goodness we sat behind the kindest, most patient bald man of all time. And he was so patient with Trajan and then finally Trajan did fall asleep. I think it’s just kind of indicative of our Syngapians. How they respond to everyday life in the world is so crafted by the people that they meet along the way. And I think the flight to go visit grandma and the whale watching story, our whale watching adventure, are great examples of how important people’s interaction with our kids are. We had taken a whale watching trip at Cape May around, let’s see, about three weeks ago now. I was a little nervous.

Jo Ashline

Fresh in the mind. 

Kari Imperatore

Yes, yes. 

Jo Ashline

Still easy to relive the day. 

Kari Imperatore

Still reliving. And I have to say, Trajan loves boats. He loves to be on the water. He loves to swim. He loves outboard engines and propellers. So we really have to watch him around those things, as you would with any child, of course. You know, I was very excited for the whale watching adventure because I am hesitant sometimes to do these things alone, but my family was right there by my side and they were amazing as well. There was a little encouragement that I needed to get our Crocs moving towards the boat. 

Jo Ashline

Yes. I’m just picturing all these Crocs now.

Kari Imperatore

A little nervous. So for the first part of it, it was kind of uneventful. Trajan had a toy hair dryer that he just kind of played with. Sat on the ground. He loves to push buttons, and of course, as things go, he sat right next to the freshwater discharge button. So I was like on offense or defense—probably on defense—so that he did not touch that button just in case, because we did not need that to happen. But he was great. He never approached the button. It did not spark his interest, and he was awesome. And I really thought that that was going to be his stressor for the boat, but I was very wrong.

Jo Ashline

He proved you wrong with that one, Mom.

Kari Imperatore

Yeah, he did. It wasn’t the button that day. He wanted to go up to the top deck and whale watch from the top deck, which, you know, I don’t blame him. That was the best viewing location to see all of the mammals. And I have to say, a good like over half the boat, of course, was on the top deck, you know, trying to see the whale and the dolphins.

Kari Imperatore

So Trajan, like, he climbed up the stairs and then he did get it in his head that he just wanted to sit at the top of the stairs, but unfortunately, you know, those are steep, slippery stairs and that’s not a safe place for any kid to sit. So that was tough for Trajan. I was able to kind of steer him towards a bench to the left of the stairs. And so I was about to sit him just on the bench when two adults moved over and informed us that the seat was taken, like Forrest Gump style.

Jo Ashline

I have some thoughts on these two adults, but I’m going to keep them to myself. We want to keep this PG-rated.

Kari Imperatore

Yeah, yeah, yeah, yeah. You know, and… I don’t, who knows why they moved over. And I always say that SYNGAP is the best of times and the worst of times.

Jo Ashline

Well, I love that, Kari. I love it so much.

Kari Imperatore

Well, I have to tell you, like, when those two adults moved over and Trajan did not get to sit on the top of the bench, he was upset. Like, that totally, that sent him off into his… his mini meltdown. So like, bring on the worst of times for SYNGAP, because once our kids get something in their head, they get very fixated on something. And he, he did want to sit on that bench at the top of the stairs. So I was, you know, I was trying to steer him away from the bench. Mind you, there is a ton of people on the top deck of the boat. Trajan is going towards a railing because he wants to look over the water. I am very uncomfortable with him going towards the railing, especially when he’s crying. 

Jo Ashline

And you’re on a boat. There’s no exit. 

Kari Imperatore

And we’re on a boat. We’re on the Gilligan’s Isle three-hour tour.

Jo Ashline

Right, right. 

Kari Imperatore

I think in my speech, I’m like 47 minutes into this Gilligan’s Isle three-hour tour. Yeah. And then I do this silly thing that, when I feel stress, I think of like crazy or silly things to like de-escalate my stress because I was feeling a lot of stress as Trajan started to melt down. I knew that I was starting to melt down too because I was really worried. We were only 47 minutes into this. And I was just like, “How, how am I going to do the next two hours?” So it was picturing the boat being eaten by a whale.

Jo Ashline

Like, “You were asking for it.” Like, you weren’t just picturing it. Like, at this point, I think, in your speech, you said, like, this was… an option you were sort of hoping for, right? You were like, “Bring on the whale.”

Kari Imperatore

Bring on the whale. Bring on the whale.

Jo Ashline

Like we just—we have all had our SYNGAP “bring on the whale” moments. 

Kari Imperatore

Yes. Yeah. But uh, you know, fast forward, the whale did not eat the boat, thank goodness, and Trajan just all of a sudden, just as our kids do, like something else caught his eye and he snapped out of his tantrum and he made a beeline for this elderly lady who was under the awning in the center of the boat. And just next to her, there was a big black tub. And then later on, we found out that in the tub was a horseshoe crab. So I don’t know if Trajan was running towards the tub because there was water in it—our Syngapians love water—or the elderly lady, but I do believe that he was—he was running towards the elderly lady and the horseshoe crab was just kind of a bonus later on. But he was slimy and slippery and he’s quick. He broke free and I was surprised and just kind of ran after him too. And I got there and it was… odd because this woman was sitting alone. Who goes on a whale watch alone? Like, or her family was elsewhere, I don’t know, but she was just sitting there alone and she was very well dressed for a whale watch too.

Jo Ashline

Yeah, I’m definitely picturing her. 

Kari Imperatore

And Trajan has no bubble. I commonly say he finds good people. Woman was no exception. She—she was amazing. He jumped into her space, into her arms, and I almost had a heart attack because he just violated some lady’s space and that can go in a multitude of different ways, but um, thankfully, the woman said, “Thank you, little boy. I needed to snuggle. I was really sad.” 

Jo Ashline

And that just, that moment—I mean, here come the tears again. 

Kari Imperatore

Yeah. Right. Gosh And, and he did. He, you know, he sat with the woman and they had a lovely time. You know, he looked at the horseshoe crab. She looked at the horseshoe crab. We all talked to the horseshoe crab. It was, it was really wonderful. And I, I almost wonder like… I don’t know if there’s a reason for SYNGAP or a reason for special needs kiddos, but they just connect with some people over other people for some reason, and he was just supposed to connect with this woman. I believe that. So bring on the best of times for SYNGAP, because our kids do make a difference in other people’s lives, and we don’t always see it coming.

Jo Ashline

That’s it. And, you know, so beautiful, Kari. Thank you so much for sharing that story again for our listeners. And I get to hear it again from you. And I’m not lying, I have tears in my eyes because I’m picturing this—what turns out to be a lonely woman who’s experiencing sadness. Your fear, which is valid, is that he’s invading her space, and it turns out that he’s exactly what she needed in that moment. Right. And that’s such a beautiful illustration of what I always say is that our kids belong everywhere. Everywhere that there is community and life and the world, that’s where our kids belong. It’s really not up to our children to bear the burden of fitting into some preconceived notion of who they’re supposed to be in any given situation. It’s really about providing them the opportunity to be seen and heard within their communities, within society, so that society begins to change and bend, and make space for, and then welcome with open arms our children of varying degrees of challenges and support needs, right? And you could have chosen, Kari, to focus, hyper-focus on the people who took the bench and were unwilling to be flexible and to see the needs of your son. And not move for him—like that really could have been sort of what you focused in on and zeroed in on the day. Like, wow. Right. And that’s really easy for us to do, especially when we’re just in the throes of SYNGAP every day. But you also, um, were part of that beautiful moment because, as a parent, you gave your son the necessary opportunity and the space and the trust for him to have that moment with this elderly woman. And so it is our kids, but it’s also all of us that need to be willing participants in giving them the opportunities to be seen and heard and to bring their magic. Right. And it’s not always going to be magic. Let me tell you about all the times that I have to look around in public and go… you know, before we knew it was SYNGAP, it was autism awareness. I would just kind of yell out at people. I was always like—I would go out into the community kind of wearing this armor of defensiveness because I was just ready for people to say the wrong thing, do the wrong thing. But it’s when we let the armor down. It’s when we’re willing to ask for help, it’s when we’re willing to go out in all the messiness and say, “If it doesn’t work today, we’re going to try again tomorrow.” I think that’s where the magic is for our kids and for us, right?

Kari Imperatore

Definitely. And I can say that we have all good moments because that’s where, you know, it’s the best of times. But it is very much the worst of times, like you said. And there’s been a multitude of adventures that I will confess that I don’t make eye contact with other people because, um, you know, I just—I can’t, or I’m—I’m doing other things or, you know, there’s—there’s just not that awareness um out there in the community. So I—I do realize that Trajan and… all of our Syngapians do hold a role to—to go on their adventures and see the world respectfully as they can, but know that they are their own little people.

Jo Ashline

Absolutely. Couple of things that I think about, right, is that, you know, Trajan is nine. When they’re two, three, four, five, it’s a lot easier. As they get older, society starts to look at our kids a certain way. When they’re 23, it’s a whole nother world. It’s no longer an adorable little three-year-old. Now it’s a 23-year-old with… um, three to four-year-old tendencies and impulses, right, depending on—on your adult child. And so all of us, as a community of SYNGAP families and Syngapians, doing our part and having our kids visible in the world and representing the adults, the children, the toddlers—it goes a really long way. We have families who travel on airplanes and they wear their SYNGAP SRF shirts. That’s causing a ripple effect. You going on a boat is causing a ripple effect. You know, us taking Andrew to his favorite church or his favorite restaurant—as hard as that may be, that’s causing a ripple effect. And I think, if we continue to be dedicated to bringing our children into these spaces so they can be seen, respected, and treasured, and also the opportunity for—for the kind people to help us. There’s going to be a lot of people that walk away. There’s going to be a lot of people who give us looks, but I promise you there’s always going to be someone that’s going to make it worth it.

Kari Imperatore

Yeah, there are a lot of fantastic people out there, and Trajan does seek them out and find them immediately.

Jo Ashline

He’s like a magnet. I love it. Our kids are pretty amazing in that way. Oh, my goodness. I wanted to pivot a little bit and give you an opportunity to talk about some very important work that you do as a naval officer. You obviously have had a lot of experience at the federal level in terms of what you see our needs for families, and especially now families with children with disabilities. And you are involved in something called the Combined Federal Campaign, or CFC. And I would love to hear more about that, as I know our listeners would as well.

Kari Imperatore

Oh, thank you for that. Well, the Combined Federal Campaign, or CFC, it allows federal employees and military and retirees from both of those populations an avenue to donate to a thousand of different pre-screened charities through workplace giving opportunities. So what that means is there’s a ton of charities—so it’s very competitive—that participate in this annual workplace giving. And the CFC is held 1 September through 15 January, so it’s held at the end of the calendar year and there’s a multitude of ways that federal employees, Department of Defense, and military can donate. You can either give a check, you can have an allocated portion of the donation taken out of your monthly paycheck, or you could look to give a lump sum if you don’t want to donate via your federal paycheck on a monthly basis. So they make it very, very easy to donate. And like I said, there’s a latitude of other charities that do participate, but this is SRF’s second year within the CFC donation realm.

Jo Ashline

That’s wonderful. So you’re spearheading that and assisting in then SRF being a recipient of these federal donations coming from federal employees. Is that correct?

Kari Imperatore

Yes. And then the federal employees, they, you know—it’s a large group of folks. So I’m very, very excited to have SRF participate within CFC. So not only is it an avenue to seek out donations, which are so very, very important, I also believe that we reach a scientific and medical population with the federal employees and the military folks and also hope to educate those populations on SYNGAP through this campaign.

Jo Ashline

Right. Yeah, absolutely. Thank you so much for spearheading that and for really collaborating with CFC so that SRF can be on the receiving end of these donations and, you know, segueing into why is fundraising for SRF important to you? Why is that a mission that you are spearheading right now?

Kari Imperatore

Well, you know, I’m just so impressed with how SRF—one, they’re very transparent on where their funds go. So, you know, as a person who donates, but also somebody who receives the fruits of those donations, I just feel that that is very important. Most recently we’ve gone to CHOP, so I know that they do have a portion of that program that is very driven by SRF. And I just, I love that they’re funding postdocs and how much of a… advantage it is to fund a postdoc and what that could mean in that rudimentary and initial scientific advancement for us Syngapians.

Jo Ashline

Right. CHOP again is part of that PROMMIS study. What was your experience with CHOP?

Kari Imperatore

Oh, gosh. Our first visit—and we’re coming up on our third visit. Our first visit was… amazing and it was so tiring. I think we were there for seven hours. It was a long visit. We drove in that morning and of course left that evening. I got tragically lost going out of Philly, which everybody—everyone—was a little hangry at that point. But our time at Children’s Hospital of Philly or CHOP, although it was long, it was validating. It was… it was a great avenue to mine data and resources that I thought that I understood, but it opened up some doors of things that I knew that I wanted to do in the future with Trajan, and I just very much appreciate that particular resource.

Jo Ashline

Yeah, that’s amazing. I’m so glad that you are participating and we have some great resources for families who are interested in learning more about the—we have a hospital in Colorado and we have the one in Philly. And definitely, we’ve covered the information in our blog. We had a fellow Syngapian family give sort of a guide on how-to for Colorado. And so I think it’s really important for folks to just at least check it out and see if it’s something they’re willing to consider doing. Um, because our—our one parent, Barta, she’s out of Arizona and she did a one-day turnaround to Colorado. Flew in in the morning, took her daughter, and then flew out that evening, and she did a whole how-to guide. And so I think people are definitely willing, like yourself, to be involved um for your child and for others, right, because it is something that benefits the community as a whole. I asked you about research and supporting research. What is it that you hope for Trajan to come out of the research that SRF is helping to fund?

Kari Imperatore

You know, I think we’re looking for a cure, and I know that’s a very broad statement, but, you know, what does that look like? I think, independently, that just looks like advancements in our Syngapian’s life. Small advancements to large advancements to a total cure. It will take any and everything that it comes about. But I’d like to demand the latter if I can. 

Jo Ashline

I love it. I’d like to demand the latter. That’s a great quote. We’re quoting that. I’m putting that on the website somewhere.

Kari Imperatore

Not sure that’s how life works, though.

Jo Ashline

No, I know, right? We’d all get what we needed and wanted if it was the case. But I think how life works is exactly what you’re doing, which is, you know, it can be so overwhelming to think about how to change the world as a whole. What you’re doing individually, right, and how you are affecting—um, not just Trajan, but his peers—how the work you’re doing directly impacts my son and his hope for, whatever that looks like, in terms of advancements. And you said, “small, large, and then ultimately, a cure.” And right now, I have no idea what that would look like for Andrew, but I know that any improvement is worth, you know, laying the groundwork and being part of the bigger picture for our Syngapians. Yeah. So I think you absolutely should and demanding the latter, right?

Kari Imperatore

There’s lots of sayings, you know, if you shoot for the moon or you shoot for the stars, you’ll find the moon or all kinds of things. But I just, I try to be grateful for what works each day, and I find that having a Syngapian, that—that is what keeps me moving in the right direction is just understanding those small milestones and being thankful for those small milestones because we don’t always have them with our kids.

Jo Ashline

Right. And recognizing that sometimes—I always said that the milestones that a lot of parents will just sort of take for granted are like the biggest deals and celebrations in our home, and that continues to be the case. Andrew is a Syngapian that is very profoundly impacted by all of his comorbidities. His intellectual disability is profound. He has Level 3 autism. He is nonverbal. He has a lot of behavioral challenges to this day. Um, he, you know, sleep disturbances and all these other things, but he still has so much to offer. He has so much joy in his life. He brings so much joy to our lives, and the idea that we can, in some way, impact his quality of life for the better thanks to the efforts of everyone at SRF and researchers and these very important dollars that are raised for SRF is—is something that really fuels us as parents.

Kari Imperatore

It does. It keeps me moving in the right direction and kind of picks me up when I need it.

Jo Ashline

Yeah, absolutely. If we become parents, we’re all changed in many different ways, right? Parenting in and of itself just changes us as people. How would you describe it—parenting Trajan and—and his needs, and how that’s changed you as a person?

Kari Imperatore

I always say it’s made me a better person because it allows me to see the small things in life. Like, it has slowed me down a lot. Because with Trajan, you have to do things very methodically, step-by-step. He doesn’t always move as fast as I would like him to move. And it has slowed me down and taking a breath and taking a pause, you know, to smell the proverbial roses. It was hard for me as a person, but I think it has brought a world of good to me as a person as well.

Jo Ashline

That’s beautiful. And I really relate to that sentiment. There’s a lot of patience that is really required um for our Syngapians, and they’re very worthy and deserving of that kind of patience, right? And we don’t necessarily all come with it naturally. But man, they sure teach us how to tap into the resource that is patience, and I think that also allows them to grow and make progress and, more importantly, to really trust us. At the end of the day, we really have to be the people who they see as their safe place so that they can go out into the world and meet the demands that are waiting for them in school and in therapy. And knowing that when they’re home, that we’ve got their backs is just really the best gift we can give them, right?

Kari Imperatore

Yeah, it is pretty amazing. I think one of the best things about Trajan is his new thing right now is… he’s just kind of a homebody, which I don’t always love, but I’ll take it when he wants to slow down. He’s been pushing me onto the couch just to sit down and to read to him or to play with his iPad, and it’s just… at first, I was like, what is he doing? But then I just had to realize that all behavior is a form of communication. And he’s telling me, “Hey, I don’t want to go to the park. Want to sit here and have you read to me”—and that was important for—for me to learn, see, and realize that he was actively communicating with me appropriately, and I needed to listen more.

Jo Ashline

Oh, Kari, you have my heart forever now. You totally—the behavior as language thing is just—that’s my hill. And I think it’s just so important. And I will—I will talk about that any chance I get. And slowing down can be really hard. You talked at the beginning of the episode about these tentacles. That’s so opposite of slowing down, right? We are not just parents. We are case managers. We are advocates. We are insurance agents. We are pharmacists. We have so many different roles for our children, both young and older. And so the idea of slowing down is sort of just the exact opposite of what it is we’re needing to do every day and yet making that time to really be in the space with our Syngapian is not only important for us, but necessary for them. You know, Andrew has a couple of verbal approximations that not many people would understand. Some are more clear than others. But he’s got one that’s clear as day and it’s “sit.” And “sit” has many definitions, and one of them is literal, like “sit.” And one of them is, to me, “I love you.” Because when he’s saying “sit” to me… you know, he doesn’t know how to say “I love you” in what we would deem the traditional verbal way. Something I felt was so important when he was two—oh my gosh, I want to hear him say “I love you.” He’s telling me “I love you” in all these ways. And one of them is to look at me and say, “sit.” And I could be running around the house and making phone calls and on my laptop. But when he says “sit,” I better stop, even if it’s for a minute. Because he’s saying, “I love you. I need you. Meet me where I am. Sit with me.” It doesn’t—we don’t even have to play anything. Sometimes he wants to show me something on an iPad. Sometimes he just wants to hold my finger and use it as a pointer. That “sit” for me is him saying, “Spend that time with me.” Give me a moment where we’re not in the chaos of it.

Kari Imperatore

I’m so glad that you were able to identify the “sit,” you know, and realize what it means to Andrew. That, gosh, it’s because it is so very important to be able to speak their language. And I love that—that he… he just tells you to sit. It works perfectly.

Jo Ashline

And the thing is, we call Andrew our supervisor. And so, you know, we get like, “I want a good progress report from him.” So I better pay attention to what it is he is telling me, whether with verbal approximations or behavior, right? At the end of the day, that’s really, again, one of the greatest gifts we can give our children and our loved ones with SYNGAP. Any last sort of thoughts that you want to share about Trajan, about your work, about SRF?

Kari Imperatore

I just want to say thank you to, you know, my family, the multitude of resources that we’ve utilized—from, you know, therapists to the doctors—and of course SRF for their additional literature and work necessary. I firmly believe that there is an amazing road ahead for Syngapians. I think it’s under-diagnosed. I think there’s a lot more. I think it is outside of the diagnoses of, you know, profound autism and the speech delay or nonverbal status and the seizures. There is so much hope on the horizon, and all of those folks in our community and our circle, I’m ever reminded of that hope through the work that these people do diligently on behalf of Trajan each and every day and I just want to say a big thank you to our community.

Jo Ashline

You are so articulate, Kari, and I’m going to be thinking a lot about everything that you’ve said today. I want to say on behalf of SRF, thank you for being part of the community. Obviously, no one wishes SYNGAP on anyone. But we’re here and you’re here and we’re so lucky to have you and your family and Trajan, really um part of our community, part of the work we’re doing and spearheading CFC, speaking at the gala. I mean, you’re 14 months in. Are you kidding me? You definitely hit the ground running. Thank you just doesn’t seem sufficient, but we’re so glad you’re here.

Kari Imperatore

I’m happy to help. We can’t do it without everyone. So I realized that immediately. And thankfully, I had amazing folks here in New Jersey who pulled me in, you know, made me feel comfortable too. So a big thank you to the local resources here in New Jersey.

Jo Ashline

Yeah, you are just incredible. And on a personal note, I would like to thank you for being my very first guest as co-host of SYNGAP Stories. I’m so excited. I appreciate your patience as I learn how to navigate the podcast, you know, vein, but I think we did a great job. I say, well done. A-plus.

Kari Imperatore

You did a great job. Thanks for making me feel comfortable because this is a very hard thing to talk about. It’s very personal. And it strikes each person with a different chord. And sometimes you just never know what you’re going to get in life and in our daily events with a Syngapian.

Jo Ashline

Well, and I’m so grateful for your vulnerability and transparency because that’s how we learn from one another and really… when you share about Trajan, I feel a lot less alone with what, you know, we face sometimes with Andrew. And that’s how—that just builds a much stronger, more resilient community overall, right? And so the next time I’m out with Andrew and we’re either hoping for a whale to eat us or we’re having—we’re doing well, it’s the best of times—I’m going to be thinking of you and feel a lot less alone.

Kari Imperatore

Well, hopefully the whale doesn’t come get you Moby Dick style, but um… you only need the best of times side of your adventures. 

Jo Ashline

That’s right, Kari. Thank you again so much. It was such a joy to speak with you today.

Kari Imperatore

Thank you for this opportunity. I really appreciate it too. And thank you for what you do. I know it grows us as people each and every day.

Jo Ashline

Absolutely. Thank you so much.

Thank you for tuning in to today’s amazing episode of SYNGAP1 Stories. I hope you found our conversation insightful, informative, and a source of support and connection. Make sure you never miss an episode by subscribing wherever you listen to your favorite podcasts. For more information about today’s guest, visit our show notes. To learn more about SYNGAP1-related disorders and our incredible community at Syngap Research Fund, visit us at www.curesyngap1.org. For questions, comments, and suggestions, please email us at ed@curesyngap1.org.

And finally, I’m so glad you spent time with us today, even if it was in five-minute increments while drinking coffee you’ve microwaved more times than you care to admit. What matters is we showed up for one another and I can’t wait to do it again next time.