[Music] It was probably other than all of you know him being diagnosed with everything like the worst thing to happen ever. I was sending him every single day to his own personal hell. And she was floor-proning him, face down on the ground. And so those marks we were seeing on his face, on his chin, those were rug burns. We didn't know this at the time and Andrew couldn't come and tell us at the time. And so the aid was just, I mean it was just everything you could imagine to torture someone with sensory issues, someone with intellectual disability. He was punished every time he didn't, he was an understanding and she was punishing him. She would floor-prone him until he stopped crying. What? So if you don't know what that means, it's a face down, full body restraining all of your limbs are restrained and your face is down on the ground. I challenge anyone to have someone floor-prone you and tell me how long before you have a panic attack. And this was for a 10-year-old 45-pound boy. Hello and welcome to SynGap 1 Stories. My name is Rainy Slosser and I'm your host for this week's episode. This podcast seeks to unite individuals and families affected by SynGap 1. Having personal experience as the parent of Hope who has SynGap 1, I wanted to raise awareness and provide valuable insight every few weeks by exploring the complexities and achievements of caring for someone with SynGap 1. Ultimately my goal is to build a supportive community among those caring for children with special needs. By talking with parents, siblings, caretakers and others about the joys and difficulties that come with the diagnosis of SynGap 1. I hope you enjoy today's episode. Hello SynGap World. I am so glad to be back again with another SynGap 1 story. Today I have a really special guest that when I met her, I instantly felt like a friend to her. Her son Andrew has SynGap 1. He is just a really sweet fun boy and I'm excited to get to know my guest, Mort, and I would like to welcome Joe Ashlyn. Hi Rainy. Thank you so much for having me. Hi, welcome. Yay, so we had a little bit of a scheduling problem that was my fault and we are good to go. I am very excited. I have heard amazing things about you. I have read some amazing things about you. You are an incredible writer. I am excited about a Phantom book that might be happening at some point that I have heard about. Let's begin with talking a little bit about Andrew. How old is he and what is he like? One of my favorite topics, right? The favorite topic. By the way, thank you for the phenomenal intro. If you want to just follow me around every day and introduce me to everyone that way, that works for me. This is a great deal. Andrew is my first born. He is now 23 years old. He was diagnosed with SynGap 1 at the age of 16. Prior to his SynGap 1 diagnosis, he had a lot of alacart diagnoses. I call them alacart diagnoses, meaning we just kept piling them on, but nothing really completed the entire story. Andrew's entire story. By the time he was diagnosed, we had given up on the idea of truly knowing why he had all of these challenges in his life. Through a new epileptologist and testing through Invitay, we got our diagnosis. When he was two years old, but now mind you, this was in 2004. You were really lucky if a new segment mentioned autism. We were not in the mainstream media. We did not have social media the way we do now. We didn't even have Facebook at the time. Connecting with people was really difficult. But by age 2, he was officially diagnosed with autism. About a week later, he began collapsing in the front yard. His epilepsy diagnosis was not far behind. Intellectual disability was also part of that. Global developmental delay, hypotonia. All of these alacart diagnoses were patched together to try to explain what was happening to our son. It was devastating and frightening. We were grieving all very normal reactions and responses. By the time at 16, when he was diagnosed with Cingep 1, that was a major shift for us. We came into it already having 14 years of struggle, 14 years of different diagnoses. Our Cingep diagnosis story is a little different in that we felt immediate relief. We had already gone through all these major stages of grieving and anxiety and stress with all the subsequent diagnosis he was getting throughout the years. The best way I can describe it is when we sat there at the neurologist's office. It felt like we were finally home. We had no idea at the time what Cingep 1 was. Our neurologist looked at us. He's like, "I have, there are no patients in my care right now with this diagnosis." He was very upfront with us, but we at least had something for the very first time. When he handed us the paper, the genetic report, and it starts to describe all of the areas of deficit and impairment for someone who presents Cingep. It was Cing Andrew's story in black and white for the very first time. The entire picture was finally there. Even though we were certainly facing more uncertainty as we were trying to navigate this new diagnosis, we also felt very much like we finally know what's going on. That was a really big deal for us. This was back in 2018. We were obviously connected. Our first connection was with the heartings. I think I posted something on Facebook. Probably tagged Cingep 1 and it popped up. Aaron Harding and Monica Harding reached out to us. Then they connected us with Mike and Ashley. It just sort of began this trickle effect. It was really peace-mealing families together because there were so few of us. We've had the pleasure and joy of watching SRF blossom into the powerhouse it is today, which has been just a phenomenal experience as a witness to that. That's sort of how we came about to the community. We're so grateful to be here. Monica was one of the first people to reach out to me when I got the diagnosis. That was a warm welcome. Then met Mike and Ashley as well. We were actually driving to San Francisco. We made a post saying, "Hey, we're headed to San Francisco. He's all, hey, stop at my house." We did that. We go and stay with them quite often. It's amazing the community is extraordinary considering that so many of us are not trying to brag, but we're pretty amazing. I'm not afraid. It's interesting. It's rare to find a community that has so many incredible people in it that are down to earth and level-headed. I relate a lot to Andrew's story and with the list of diagnosis and they really do pride themselves on being extra. I just have to say. I mean, it's super about it. We just got the diagnosis on top of everything else of Crohn's disease and I was so devastated by it. I felt like, "Okay, great. Why God? Why another thing? How could we just get hit with another blow?" Somebody in my life just recently said, "No, Rainy, you're looking at it wrong. You didn't get hit with another blow. You got blessed with finding something else that she already had. She didn't just get hit with the she had it and thank God you found it because now you can treat it." With the Syngath One diagnosis for us, it was a huge blow and I was so devastated, but now I'm so grateful for it because we found it. We're one of the lucky ones who found it. Right. And I think being without that foundation or that tether to community, because what we found with Andrew was that we have definitely had, we've made a lot of friendships.
over the years, we've been part of several different foundations over the years, and we're so grateful for them, you know, because they've been supportive. But for us, it was also nothing really fully encapsulated our child, right? We didn't see him completely in any one of these organizations or communities. That was not the community's fault or the organization's fault. They were there for us over the years, but it just was a testament to the fact that we still have this huge question mark looming as to why. And so I think that the power of getting diagnosed with Cingab and then finding the Cingab community through SRF, I call it home. It just really feels like you have been traveling this very winding, treacherous road, trying to look for home, and suddenly there it is. Just when you're about to give up, you see the light on, and there it is, and there are people there welcoming you, and it feels right. And one of the biggest expressions of that for us was that the conference in December in Los Angeles last year, you know, you couldn't turn a corner without bumping into someone that just knew. Yeah. You didn't know to say much at all, and we had Andrew with us, and so we felt so comfortable. It was the first time we really attempted to take it, you know, last place we would ever take him as a conference. Okay. Barely get myself to a conference, little and Andrew, but it was just, they made it so easy and everywhere we turned, we were with our people. And there's something I'm so empowering. And it lifts this dreadful isolation that many of our families feel. It's really easy to become isolated, even if you have all of friends, and it doesn't matter who you're surrounded by, if you don't have people in your life who really get you, the isolation seeps in, and it can become all encompassing. And so that conference really lifted that isolation for our family. We felt so welcome, supported, and I was thinking, God, if a conference can do that, right? If a conference with a portion of our community can do that, we're unstoppable. All of us together. We really are. And I, it really fueled us in a way that we weren't even prepared for. And I think my husband and I came home from that conference with a renewed sense of not just commitment to SRF and its mission, but to our son, to each other as a family, to be willing to be uncomfortable for the sake of being out in the world and out in the community, to seek these connections with fellow Sengap families because it's so worth it. And we're still writing that high. I'll be honest, even though the regular life has kicked in, right? Problems, all the stuff, knowing that there is the safety net where if there is a crisis, you know, a mental health crisis, for instance, right? In the midst of parenting or whatever the case may be, that we have a lot of people we can reach out to that are going to nod their heads and say, yep, you are not alone. And we're not here to judge you, you know, and we support you. That's a beautiful thing. Yeah. Absolutely. I agree 100%. We were at the conference too with how we're going to. Yeah. And I actually think we got a picture of Andrew and Hope together. We did. We did. It's so cute. But yeah, I didn't once have to apologize for my daughter, you know, and or even feel the need to. Right. And when we arrived at the hotel and we saw how fancy and beautiful I was like, are you kidding? Hope is going to like break everything, you know, and I was so scared and worried that I wouldn't be able to control her or, you know, handle it. And the thing was, is it didn't matter. It didn't matter in that community if she was angry or having a meltdown or making a scene or talking, you know, during an important time. People looked at her with awe and love and acceptance. And they were all there fighting for my daughter. All the scientists, you know, we're talking about my daughter and your son and how they were going to make their lives better and change the our world. And the great thing about it is that conference is every year and it's going to be an lanternette share. And we're going to plan an ongoing and we're going to try to fly one time before the conference to see if we're capable of doing it with the baby. But we're really excited. And yeah, yeah, or longer. I don't know. We're a bit insane when it comes to that too. We know we can drive. We did the drive. Yeah, we've proven that. That's right. The flying scares me. The amazing thing is, is we interviewed the Navarro's and a couple months ago and they are Chelsea Navarro's an expert on how to travel with your son Gapion and with special needs and all the services that are available for us out there. So what if you get a resource in our community? Exactly. And it's like each parent I'm speaking to has this quality about them. We're kind of specializes in how do you do this and how did you find this and what you said about social media. Like I think about you guys when like 20 years ago where you didn't have the social media. And I am so incredibly grateful that this is the time that we have and the era that we have the capability of communicating and staying in touch with the family. I think the most equitable part like comparison would be like Yahoo groups. You know we'd find each other really. Like Yahoo groups in the early arts as they say. But yeah, I was born in the 1900s. So I remember as I went out social media. You said something really important that struck me which was how at the conference you felt like you didn't have to apologize for hope, right? And I thought about that when you said that that really struck a chord because I think that is one of the things we are burdened with unfortunately. That really doesn't belong to us right. It belongs to a society that still has a long way to go in accommodations, acceptance, inclusion, equity, you know within the community and society as a whole. And the truth is none of us should feel like we need to apologize for our children. Whether we're at a synchep conference or whether we're in a church or whether we're in a school or a grocery store or a park or a bathroom. Because I always tell people you know when we're out in the world this is Andrew's world too and he belongs in it. The burden to change and widen the accessibility for him is not on Andrew. It's not on our kids right. It's on society as a whole. And I listen it is easy for me to sit here and say that in the comfort of my home right. It is much harder to practice but I think my message would be to families that we do have to empower one another and remind one another that we belong in the world, our children belong in the world. The reason there's such a deficit between our children's needs and society's willingness to give or meet us where we are is that for historically our families like ours were hidden from sight. You know our children were institutionalized where they were treated horrendously abused worse. And we have come out of hiding and come out of that darkness but society has a lot of catching up to do so I think you know one of the messages that I often give to families is this is your world too. This is your child's world too and it is okay to be messy in the world. It is not our job to try to conform our children to some kind of standard that we cannot maintain or reach. I'm very passionate about advocating for accessibility and accommodation. I used to use the word tolerance. I really don't like that word anymore. You know like I tolerate the dentist barely right. I tolerate paying my bills right barely. That word doesn't really encompass at all what we're seeking for our families in our communities right. We want to be fully included. We you know the feeling that we have in our syn gap community is very special and that's not going to be something we'll really be able to replicate you know at our local target right. But just knowing that we can enter these spaces without feeling like we have to apologize for the many challenges our children and our families face I think will be a day that I will be very grateful for because I think that is a real struggle and challenge for a lot of our families is all why can't do that because this I can't do that. And then our world begins to shrink and in no time at all it gets really hard to be out there so I in particular love this huge road trip you take. Yes the road is for your daughter these states are for your daughter visiting these places and friends and sightseeing is all for your daughter too it's her world too right. And on days where the last thing I want to do is navigate society with Andrew I just have to remind myself but it's his it's his world too you know and he belongs in it and that means that I have to be willing to step out of my own comfort zone and get out there and also the visibility is important right society doesn't remember us if we're not out in the world we have to be visible right when we are advocates.
for the things that matter most to our children and to our families, we have to make our presence known. And that's a really big part too, right? I got to tell you like we're really the only family in our church that has like with Andrew that the only disability family in our church that I think I've ever seen. Maybe one other here or there and we have multiple like parishes we belong to. And that's a problem. Yeah. That's a real problem and that's one example, right? We're like of all the places that should really be welcoming to all. Why are families feeling like they can't access something that is advertised to be for everyone, right? Right. So that's just one example but I think that's a really big sticking point for me in terms of like advocacy work, you know? Absolutely. And oh such good words, such good words. Let's talk a little bit about Andrew's schedule. I have actually noticed a couple recent posts lately of hey my child is like only three or four years old. What is it like when they're older? And you have an older son Gapien who is he still in school? What does his day look like? Yeah. So Andrew's 23, he turned 23 in March and so he aged out of IDA and FAPE last year upon turning 22, right? Because public education under IDA for our for our children with disabilities that qualify goes until age 21. So he has not been in school and really the pandemic did a lot. That really sort of came in and interrupted his education anyway. Andrew is he's got some medical complexities. He is a high risk for pneumonia and has had several bouts of pneumonia, which is obviously frightening. So we never put him back in school actually after the pandemic and we sort of incorporated what we could into the home setting. I work from home so that made it a lot easier to be able to do that. It's a great question you're asking me because the truth is and it's like anything, right? State by state you're gonna see different things. There's the federal laws that govern, right? So Andrew's still protected under section 504. That means that he cannot be discriminated against, you know, due to his disabilities. Of course, the law is only as good as it's put in practice. So it's one thing to have a lot. It's another to actually fully practice the law. But when they become adults, it is kind of like falling off a cliff a little bit, right? Because up until this point you are, you become fluent in IEP land and school and all of those things and our adult services as a country in general are not great, okay? And again, it is not hard to understand why if you look at the trajectory historically of what we were working with for individuals with disabilities, you have to think about the civil rights and all that's the sixties that wasn't that long ago. And so prior to that obviously we had a lot of individuals institutionalized and no one cared about day programs and adult services and school and we've really had to, you know, we're all standing on the shoulders of giants, I say, right? Everyone that fought and protested for the right to for our kids to go to school for the right for our kids to live at home with the correct supports. And now we're sort of in this sort of limbo between students and adults, right? You age out of school and we have not caught up as a country, as a whole, to the services that we have available for adults. Not only are they subpar, they're not well-funded, you know, Andrew, we in particular are very careful with Andrew as he was the victim of abuse in his school setting when he was 10 years old in the fifth grade. And so we have obviously for good reason a lot of trust issues. He went through a lot of trauma as a family. We went through a lot of trauma. So I'm not just gonna pluck him into a program just because they call it a day program. So what we're doing in California, which is where I live, we have something called the Regional Center and every, you know, County has its own Regional Center. And the Regional Center is the sort of social institution that funds services. It begins in childhood. And when you are part of the school district, they will fund anything that doesn't sort of fall under the jurisdiction of a district. They're kind of called the the payer of last resort. Now that Andrew is an adult, he's aged out, he qualifies for more services. So we're in the midst of learning a whole new language. It's called the self-determination program. And you know, for someone like me who came from IEP land where I was like quote unquote an expert by the time we aged out, I am now I feel super helpless and trying to learn all these things. And I know I'll get there. But in the meantime, it can be kind of confusing. But ideally what's going to happen is Andrew gets a budget based on his needs. And we will create where in the process of creating like a day program for him that will originate out of our home. Because that is where he thrives. That is where he is most comfortable. And that is where we can ensure that the support he's receiving is the best quality support, right? Where we can train the people that we are going to bring on to work with him. Our primary goals for Andrew and adulthood is quality of life is happiness. Yeah, I'm not worried about him adding. I'm not worried about him subtracting. I already know where his academic skills lie. That's not priority for us. For him, it's really about community integration, building communication skills through AAC, making sure that he is again out in the world doing the things he loves. And he loves doing a lot of things. He has a lot of things he loves to do. We just need help. You know, we need support in order to be able to do that, right? Because Andrew at 23, he is small for his age, but Andrew at 23, he still presents with maladaptive, self-injurious, aggressive behaviors. A lot of that stems still from the trauma from his abuse. And so one to one ratio usually isn't going to cut it in the community. It's usually got to be two one ratio. So we're building this program so that he can access his favorite part. The beach is bowling. He loves to tour empty churches and look at stained glass windows. He just has all he has a lot of things he loves to do. And now we're trying to build a program where at the heart of it is all of his interests, right? The heart of it is continuing to make progress in areas like communication and behavior management and things like that, but really also making the world continue to be more accessible for him. Yes. Yeah. Yeah. We are fortunate where we just started self-determination in January. And it's an incredible program. It is. Like we've gotten respite care and I get to hire where it's not just a caregiver. It's a personal assistant for hope. This person is able to drive her to therapy appointments. And I can't be there. She's able to take her out in the community, which is most of hope schools are all yes community based. And like they can help with you decide that's the amazing thing is that you decide how her budget money is spent. Right. So if our goal is to help communication, then they can help pay for communication device. Right. And or if our goal is for hope to ride bikes in the park, well, hope he is not strong enough to ride her own bike. So she needs a little cart behind our bike to get to the park. Well, I'm not strong enough to pull 50 pounds of hope and a cart. And so they said, well, why not get an electric bike. And so and it's like, okay, well, that's great. Yes. Let's go ahead and do that. And then they said, well, now think about how are you going to get that bike to the park to ride bikes? Well, we need a hitch on our car. And we need a bike rack on the back of our car. And so like really this program, they're like, you need to think deep. You need to know how look at every detail of how you're going to get hope into the community and to accomplish this goal. Right. And if it is within the guidelines of what the budget can be spent on, then they will make it happen. Yep. And it has been phenomenal. And I have been so incredibly blessed and in awe of this program. And so if you are in California and you are hearing about this, reach out to one of us. And we will tell you about self determination because it's in it's all in California. It might be in other states as well under a different name. Yeah. But it is an incredible resource. And I'm, yeah, I am really excited that you brought it up because I was wanting to. Yeah, we're like in the throes of it right now. We're doing our budget planning and everything. So we're we're exciting. It's daunting. But you know, at the heart of this kind of program, which really should be the heart of everything that our children, every service our children receive is really person centered planning, right? We call it Andrew centered. We see Andrew in this literally like guy visualized Andrew in the in the very center. He is the heartbeat. And what is it that resonates? What really speaks to Andrew and to his needs and to his interests. And then
we branch out from there, right? Because it really is about providing access to joy, access to opportunity, access to experience. All the things that most people take for granted every day, right? Oh, I want to go to the beach and hang out or I want to go here and hang out. That becomes very difficult for our families. And so for us, the priority is setting up a program that really allows Andrew to enjoy all the things he loves to do. And when he is happy, we call him our supervisor. When our supervisor is happy. We are happy. We are happy employees of our supervisor. And so keeping Andrew happy, he's got enough problems man. He's got enough challenges. Like he's got enough stuff going on where he, the rest of everything else should just be good. So yeah, we're excited. I wanted to circle back to what you about like the schools and the programs that he had when he was in school. And how that changed your perspective and your, basically, your goals to getting him into a day program. I know that Andrew had an experience that happened to him when he was, I'm not sure if it was when he was in school or in a program, it altered how you vet your programs. And yeah, I'm sharing about that. Absolutely. And I share this because I, A, if I can help another family, but also his story deserves to be told. When Andrew was 10 years old, he was in the fifth grade at a local elementary school and sort of up until that point. Yeah, I was like a parent that brought coffee to IEP meetings and donuts for everyone and favorite sodas for the teachers. And that was my way of really trying to, and also as an educator, I taught kindergarten. That's my background as education. So I love to, I love teachers. I love education. I love all of our hard, hard workers. However, not everyone is, should be a teacher and not everyone. It's not just about qualifications, but really about how you see children with disabilities, especially when you are working with the most vulnerable student population, you know, this is not a job where you're going to get rich and famous. Your heart really has to be in it. What you learn in school is very different than what it looks like in a classroom. What a textbook teaches you versus what a district is willing to do to support you as an educator. So there's a lot of different factors at play, right? And I think for the most part, our teachers are in it for the right reasons, but there's always going to be outliers, unfortunately. And what makes our children often times even more vulnerable is that if I had acted out as a kindergarten teacher, if I had even said something with my gen ed class that was like out of line or whatever you know, those students are going to come home and start telling their parents, "Oh, Mrs. Ashline said this and this, you know, and I would be in trouble." But our kids, unfortunately, a lot of them have speech and language delays. Some of them are non-speaking, nonverbal. There could be cognitive impairment at play due to intellectual disability, so they wouldn't even understand necessarily what they're seeing or hearing. And so you have a really vulnerable population that can be victims of abuse. One of the things that happened with Andrew was that he had a teacher who saw him as broken. That's the only thing that makes sense, right? She saw Andrew as someone who was broken and she was the only one that was going to fix him at any cost. And Andrew at the time weighed 45 pounds. He was really underweight for his age, you know, due to all of his health issues. And obviously could not come home and tell us what was happening, but there were signs. So he used to love the school bus and all of a sudden he would scream when the school bus would come in the morning to pick him up. He would be on the ground crying, screaming. And obviously we were like, "What is going on?" And he started scratching up his face, which he had never done before, right? Where he was gouging his face apart. He would come home from school and have new scratch marks. He had a mark one day on his chin. And we were like, "What is that?" And of course, anytime we brought anything up, everybody was like blaming his diagnoses. "Oh, well, you know, he has autism." You know, he had a behavior. He had autism. He had autism. You know, this is what he does. He has autism. And for a while, and this is heartbreaking, we bought it, right? We were like, "Yeah, he does. He has autism. He has behaviors. That makes sense. He's obviously having a tough time." And a few months into this fifth grade school year, his one on one aid came to our home. She had been with him for a few years and told us what was going on. And it had been, it had amounted to months of abuse, physical, emotional. And I'm not going to go into all the details here. But there is public record. We filed lawsuits. We, you know, we were, the story was on the news. We went through everything. I was writing for the local newspaper at the time and they covered the story as well. There was a great article done on a through ed source on it. So if you, you know, if anyone's interested, you just kind of can Google Andrew Ashline and see what pops up. But suffice it to say, I'm giving you a very abridged, you know, version, but all hell broke loose, right? And it was probably other than all, you know, him being diagnosed with everything, like the worst thing to happen ever, right? And she was floor proning him face down on the ground. And so those marks we were seeing on his face on his chin, those were rug burns, right? We didn't know this at the time. And Andrew couldn't come and tell us at the time. And so the aid was just, I mean, it was just everything you could imagine to torture someone with sensory issues, someone with intellectual disability. He was punished every time he didn't, he was an understanding and she was punishing him, right? She would floor prone him until he stopped crying. What? So if you don't know what that means, it's a face down full body restraining all of your limbs are restrained and your faces down on the ground. I challenge anyone to have someone floor prone you and tell me how long before you have a panic attack, right? And this was for a 10-year-old 45-pound boy, right? So restraints, seclusion, all these things we had never heard of suddenly we were like, what? And turned out four or five months of this was happening to our child. And completely traumatized him. He stopped toileting at school and he never ended up toileting at school again after that he should lock him in the bathroom. It's just horrible, horrible things and that's just the tip of the iceberg. But I say this because my other message to families is behavior is language. Yeah, I will die on that hill. Behavior is language. That is my hill. Our children have behaviors. It is a part of their diagnostic profile. But there's a reason for it. It's not because they have odd. It's not by blaming it simply on the diagnosis. We are taking away their voice and what they're trying to tell us, right? And it is really easy to blame a diagnosis, but I want to urge families to remember that our children are speaking to us through their behaviors. It might be pain. It might be anxiety. And I mean, it could be as simple as denied access to a favorite toy or favorite place. We still have that here. But I really want to encourage people to never lose sight of the fact that behavior is language. When we are in pain and we are distressed or we are scared, we become animalistic in our communication. And that's with those of us who have language who can talk. When you're in agony, you're more likely to lash out. You're more likely to go back to that primal form of communication. And that's what oftentimes our children, that's really their only way. And so that really for me became sort of the mantle I picked up after his abuse was that I will never, ever ignore behavior ever again. And I will always see it as language moving forward and that it is my job, my burden, not Andrews to decode what he's trying to tell me. Right. So we do. We went through all the lawsuits, new placement. He ended up in an NPS and non-public school that went a really long way in helping him heal and our family heal. And then we made a lot of tremendous progress. But yeah, we don't trust very easily. And it's something that I teach at a community college and I use Andrews story to teach future educators. I teach disability study courses there. And I oftentimes will talk, these are our future educators. And that's what we talk about is what happened to Andrew and how to prevent it from happening to one more kid. Yeah. There are some synchapiens that they are nonverbal, but truly not a single one of them is nonverbal.
because you're right, every single behavior, every single movement and even their attitudes if they're spicy. That's hope is labeled spicy a lot in the hospital but she is communicating that she is scared and that she is in pain and you know we joke about it but it is her communication is widespread and she might not have words but she communicates in every everything that she does. Either be laughter or squeals of joy or a nervous we know the difference between her nervous ha ha ha and her happy ha ha ha both of those you know and she also does a woohoo and sometimes it's a woohoo that she's excited about something and other times it's I'm not sure what's happening and I'm gonna make a sound so that you know that I'm nervous you know and so there truly is no nonverbal. Right it's you know I think that the hard thing is that when you are in the midst of behavior crises and trust me when I tell you the fallout from Andrew's abuse right we went we always had self-injurious like head banging since he was very little and things like that so but the fallout from that trauma the escalation and behaviors the pain our son was in and the amount of healing it took from a very intimate team that we trusted you know that's a whole nother podcast episode but I think the lessons we learned the humility we gained the new perspective right where really our job is to listen whatever reform that language comes in our job is to listen and that's hard to do when you are obviously dealing with a behavioral crisis you know we are I'm very against restraint and seclusion both at a professional capacity and a personal capacity we have resorted to being trained in and utilizing what's called blocking and evading tactics we know and the topography of Andrew's behavior like better than anything else and so we are almost always prepared I say almost because you know obviously but we have the equipment we need we have mats we have arm guards I went on Amazon and purchased like MMA fighting pads from for our arms our forearms and our shoes we have little MMA padded helmets if we need them and we just have stuff kind of tucked away throughout the main parts of the house where we know maybe a behavior is more likely and we are just prepared right yeah but our goal is to lesson and eventually eradicate behavior to the extent possible to be prepared for behavior and then to refrain from retraumatizing Andrew by taking away his autonomy right his his independence and I will say I understand this and the reason restraint and restraint in particular seclusion less so but restraint if my son is running towards the 405 freeway here right please tackle him to the ground and stop him that is an emergency okay but what's happening in our classrooms across the country is that restraint and seclusion is being used as a form of discipline and that is highly inappropriate and abusive it is used as a way to subdue our children rather than address the core reasons for behavior and it is killing our kids especially children with epilepsy there are the documented cases where children students young and old who have been floor prone and restrained in classrooms have passed away especially those with epilepsy so it is really incumbent upon families to get educated and to not allow someone to tell you that this is the only way to manage your child because that is a lie what ends up happening is that this is the easy way out for educators who are either untrained or unwilling to put in the hard work that it takes to get to the root of problem behaviors and to help mitigate them right the first thing you have to ask yourself if your child is displaying increased behaviors like what is happening in the environment if my child is displaying behaviors every time they're heading off to school right what is that telling me about that environment what is happening in the school day that is making my child lash out act out become anxious right that doesn't mean that we're accusing people of doing terrible things without evidence it's not about scaring families to assume that everything that's happening their child is bad but it's about being aware educated and never forgetting that you are your child's best expert follow your intuition follow your gut if something feels off it probably is right exactly and like also just the schools the providers the caretakers that you have in your life sometimes you get a hold of one and you're like oh you're the best thing to happen but and you're so scared of losing them that you know and it's like the truth is is that if your child is not bonded or bonding well with a certain provider or a certain person that is in their life then you can find someone else you can go and go and search if the school is not working out then find out what your options are because we don't have to settle yeah we don't have a settle it's hard work but I will tell I guarantee you the work that is involved in healing someone from the trauma of an abusive placement is much harder than fighting for the right one right or the right provider or the right caregiver and also making sure that the people who are caring for your children are aligning with what your goals are for your child right and that includes things like a BA any kind of intervention that you're utilizing you know if they're a pediatric intervention making sure that the people that are tasked with taking care of your treasure child are in alignment with your vision for your child and one example I can give is when Andrew was first diagnosed and we began in home a BA which we ended up doing for 14 years right yeah the big sticking point for the first year of his a BA was like quiet hands right because of his hand flapping quiet hands right and we bought into that we were like oh yeah Andrew quiet hands I can't tell you how many times during the day we would say quiet hands he would barely lift a finger we were like Andrew quiet hands quiet hands I like cringe when I think of it now right a whole year telling him to quiet those beautiful flapping expressive hands right and the reason for quiet hands in the first place was to make him fit in to whatever society deems was an appropriate way to behave with your hands okay now if Andrew was walking around punching people out yeah working on his hand gestures would be totally appropriate but flapping and I think you know as we became more educated and really started to start that we were like this is gross we don't like this we're not gonna use that anymore we're not saying quiet hands anymore in our house like right please flap and when we made space for Andrew to be Andrew we we found out that his flapping is one of the most beautiful expressions of joy that he has it is it is spiritual to watch him flap his hands right he does not flap for just anything and when he does you are in the presence of total happiness and so that was sort of our first step in making sure that whoever was working with Andrew was really in alignment with what we wanted for Andrew right what have we want for him we want him safe and then we want him happy and then whatever comes next he can't be happy if he's not safe right so we have to start there there's like a hierarchy so we want him safe but then we want him happy we want him respected we want him to have dignity you know and then everything else kind of falls into place after all of that you have to start at the most that the most important part right but safety should never be a reason to remove dignity either right we can keep our kids safe without violating their dignity or violating their right to respect from others right you know and that's really important to it's yeah listen 23 years in and I am still waking up every day learning I you know there's days where I'm like I don't know what I'm doing and there's a lot of hindsight it's really easy to be an expert in hindsight right we're all geniuses in hindsight and there's things I would do differently for sure but as long as I am staying true to making sure what we do is Andrew Center then I think the mistakes are fewer and and further between you know right yeah right yeah that is that's an incredible journey that you guys have been on and it is it is exhausting to fight for what our children need and deserve but the journey that you went through to heal from something like that is so much more exhausting and so you know I I recently heard my friends say that she wanted more in life than just
advertising. She thought that her synchapian was given to her and that is her purpose in life and I absolutely agree like hope is my purpose in life and fighting for her needs and fighting advocating that she gets treated with not just the minimal but she's she's extraordinary and she deserves so much and being an advocate and fighting for my daughter and what she needs and what she deserves and it's my purpose and I am the expert you're the expert of Andrew we are all experts of our children and we go to doctors and we go to specialists and we educate them on synchap one and we go to the schools and you know with my IEPs and stuff with hope I am having to fight for just what they consider is adequate enough right that is what they have the terminology they use this is adequate enough no it is not and I will grab this and I will run with this and I will I will pursue this and I will not stop fighting and I will not sign that IEP and tell she has the extraordinary measures that she deserves you know yeah it's you know yeah and it's it's a lot of work it can be really daunting I think to talking about one of the things I love to see in the synchap community especially through the social media channels like Facebook support group and things like that is how families are willing to be vulnerable and transparent in their struggles especially as it relates to behavioral challenges with their children because it allows the rest of us to feel less alone less isolated the subject becomes far less taboo we need to be open about the things that we are struggling with in order for us to come together as a community to help each other and to be able to use the things that we've learned along the way to maybe help someone else prevent things from escalating or going down you know a path that's not good you know and there's obviously this is a whole nother topic but the same can be said with a topic of puberty in our you know kids lives and how that pertains you know talking about these things that for a long time have been considered to be taboo or things that we keep to ourselves because when we don't talk about them we do feel like what were the only ones going through it right and by being willing to be vulnerable and transparent we're able to build upon that community and say us too and what did you do and seeing that level of support from our synchap communities is phenomenal yes oh let's change directions here a little bit how are you involved with the synchap research fund I know that there's a big event coming up in June called splash for synchap and I was wondering if you could share a little bit about your involvement with SRF and some of the things that are coming up yeah so I am so lucky to be a volunteer with SRF and I am in really amazing company my role is to support the blog for SRF which I love to do so either I will write pieces for the blog for instance if you know I'm working on the wrap up for Sprint for Synchap which we just had back in April and I will ask fellow families to contribute so I have some amazing contributions for that so you guys will have to look out for that blog post coming up here in the next week or so and and you know I will edit things that people bring in shoot ideas for blog posts sort of help make sure that anything relevant is posted but yeah I'm just I'm here to help and and really serve in whatever capacity I'm needed but my sort of expertise lies in writing and assisting with the blog portion of SRF and its website yeah and I love to do it it's a really special way to also meet other families and other volunteers and hear stories because I get to see sort of you know I get to connect with people that maybe my path hasn't crossed with this family yet now they're doing you know a post about something and I get to really get to know them and work together so that's very special yes and then what exactly is splash for Synchap so splash for Synchap is something that we all sort of it's like a global thing right and it's based upon the idea that our Synchapians love water that's sort of a big common denominator for our kiddos young and old most of them really love water water place swimming the ocean lakes you know anything to do with quote unquote splashing yeah and so this is a way to bring attention to Synchap in a very fun way and because we are all sort of spread out right we can't same with Sprint for Synchap you you really can't have one sort of event it's it's all over the place because we're all over the place but it's a way for us to come together especially on social media and share our collective joy of water while simultaneously bringing together the you know Synchap community and talking about Synchap right to the community at large yeah the fascination the obsession with water is seems to be an absolute necessity for Synchapians and I know last year it was you know June is a busy month of vacations are starting the school is out the kids are home and yeah I wanted to participate and really it was I didn't have the band with to participate but what I did is I stuck her outside in the sprinklers with a little sign and took a picture yeah yeah that's it just throwing awareness out there and that's it growing awareness you know and I see it as yeah yeah splash for Synchap take your photo doing some kind of water play whatever even like you said sprinkler in the backyard that works yeah and I think it was Synchap International that came up with and it is it's global and right now I think they said there's a 1,581 diagnosed patients with Synchap one and that's throughout the whole world and that's again you know it's how rare our our kids are but yet coming together all on a day and showing the similarities and that we have each other is it's really special and raising awareness like you know at those numbers we're gonna climb so high once Synchap is a common term you know Synchap I mean it's a common absolutely and especially when I see you know like Karen for instance in her 60s right and like all of these other Synchapians that are in their 40s and 30s and you're like we are out there they've just not been diagnosed and so the awareness is critical in order to fuel the diagnoses right not only do we want to make sure that families are aware like hey here's does your child present with this your loved one have this list here take it to your provider suggest maybe additional genetic testing here's how to do it that's really what's gonna drive those numbers right and we know it's important because that's also gonna drive funding for research the stronger the numbers are the more likely we have support for research right towards treatments and and a cure yes exactly so we just decorated obviously our car we we had the back window all decorated and stuff because we did hope for the cure the cross country tour and we you know I didn't I don't know if it brought in any funding or anything like that but when somebody at the gas station said what is that that is how important and it makes it worth it you know it crossed it cost a couple hundred dollars to decorate my car but you know what there were people who asked what is sin gap you know and they didn't even know how to pronounce it and it was like let me tell you and so that one person learned something and now they probably they might have somebody in their life that has a child who's autistic or who has similar you know things going on with them and they're gonna share that to them and that child could go and get diagnosed and so that makes it all worth it and so yeah you know sticking up with your right sticking a picture on social media in June for Splash for SinGap 21. The reason we have it on June 21 is because 621 is part of the genetic address for sin gap one related disorders and the sin gap global network started Splash for SinGap as an awareness day you know so it's an exciting fun easy way for us to really build awareness through social media posts being out in the water doing some kind of water related activity with our loved ones with SinGap one related disorders who obviously love water right most of us will be like yep Andrew loves to swim he doesn't know how to swim but boy does he try right yeah we've got to be in the water with him keep him safe but we have this common denominator with our loved ones with SinGap
and get one related to sores. They're love and passion for water. And so bringing together these important parts, you know, really makes for a fun way to spread the word about Sengap 1 related to sores on 621. So what you wanna do is take a picture. A lot of times we'll make a sign. Sometimes we have a sign you can print from home. And you're gonna snap a photo of your Sengapian, having fun with water. And then you're gonna post it in #slashforSengap, right? - Yep, that's all it is. And if you go onto the SRF website and just put in SplashforSengap, you at the bottom, you can see the, where you can print out a flyer. And you can learn about studies. You can also get involved and you can donate and plan fundraisers and each dollar that we raise, each person that we spread the word to about Sengap 1, is one step closer to a cure. It's one step closer to treatment, to therapies, to improving the quality of life for our children and for us. And so anyway, but, well, I wanna thank you so much, Joe, for joining me. This has been a phenomenal episode. - Thank you so much for having me. - Such an honor. And I just, I love that you actually live in my state, California. It's a big state, but we will get down. We will get down to Southern California. - Please, you are so welcome. We are in Orange County. We would love to have you come out and visit. I know it didn't work out on your road trip, but we can't wait to have you over. And that goes for anyone with, you know, within our community. We are here. - Yep. - We would love to meet people, welcome people. And thank you. This was such a joy for me to be able to be on. - All right, well, thank you so much. All right. - Today's episode of Sengap 1 Stories was a testament to resilience. We are glad that you joined us. Strengthen your connection by subscribing and liking us wherever you're listening. You can learn more about Sengap 1 and the vital work being done to find a cure by visiting Sengap Research Fund website at curesengap1.org. Dive deeper into our guest remarkable journey through our show notes and feel free to share your thoughts and suggestions by emailing us at
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