On the Spectrum with Sonia Krishna Chand
Welcome to On the Spectrum with Sonia Krishna Chand, the ultimate podcast dedicated to unraveling the beauty, challenges, and triumphs of living with autism and embracing neurodiversity. Hosted by Sonia Krishna Chand—renowned autism advocate, speaker, and author of the transformative new book Dropped In The Maze—this podcast is your go-to source for meaningful conversations about the spectrum of life.
Each week, Sonia brings her deep expertise and personal passion to the microphone, diving into critical topics that matter to families, educators, and allies alike. From understanding the nuances of autism spectrum disorder (ASD) to exploring the broader neurodiverse landscape, the podcast is a treasure trove of insights, strategies, and heartfelt stories.
Why Listen to On the Spectrum?
- Parenting & Family Dynamics: Raising a child on the autism spectrum comes with unique joys and challenges. Sonia shares practical parenting strategies, tips for fostering connection, and advice on navigating developmental milestones, education systems, and healthcare resources.
- Relationships & Social Connection: Autism doesn’t just shape individual lives—it profoundly impacts relationships. Episodes explore topics like building meaningful connections, navigating romantic relationships, and fostering social skills in neurodiverse individuals.
- Education & Advocacy: Learn how to effectively advocate for your child or loved one in schools, workplaces, or the community. Sonia will explore Individualized Education Programs (IEPs), inclusive learning environments, and overcoming systemic barriers.
- Mental Health & Self-Identity: The intersection of autism and mental health is vital yet often overlooked. Sonia tackles issues like anxiety, sensory processing challenges, and the journey to self-acceptance and empowerment for individuals on the spectrum.
- Celebrating Strengths: Neurodiversity is about valuing every brain's unique wiring. The podcast highlights stories of resilience, innovation, and creativity from people on the spectrum, proving that differences can be extraordinary strengths.
Meet Sonia Krishna Chand
Sonia Krishna Chand is a passionate voice in the autism community, dedicated to fostering understanding and inclusion. As the author of Dropped In The Maze, Sonia weaves powerful storytelling with expert insights to help readers navigate the complexities of neurodiverse living. Her podcast extends that mission, providing an audio space where listeners can feel seen, heard, and inspired.
Who Should Tune In?
This podcast is for anyone touched by autism—parents, caregivers, educators, clinicians, and neurodiverse individuals themselves. Whether you’re just starting your journey or are looking for deeper understanding, On the Spectrum with Sonia Krishna Chand delivers the tools, perspectives, and hope you need.
About Dropped In The Maze
Sonia’s newest book, Dropped In The Maze, is an eye-opening exploration of neurodiverse experiences. Through raw storytelling and actionable insights, it illuminates the twists and turns of life on the spectrum and serves as a guide for creating meaningful connections and inclusive environments.
Join the Conversation
Together, let’s celebrate the beauty of diversity and build a world where every voice matters. Listen to On the Spectrum with Sonia Krishna Chand on Apple Podcasts or your favorite podcast platform today.
On the Spectrum with Sonia Krishna Chand
Empowering Drayson: A Mother's Advocacy
Navigating the maze of autism diagnosis can be overwhelming and isolating. Today’s episode of "On the Spectrum with Sonia" features Nikki Shipp, the courageous host of Pieces for my Puzzle podcast, sharing her personal journey from the initial shock of her son Drayson's diagnosis to the joyous moment he first called her "mom." Nikki’s story is one of resilience and unwavering belief in her son's potential, a tale that resonates with many parents facing similar challenges. Together, we dissect the emotional highs and lows and the proactive steps Nikki and her husband took to secure the best care and support for Drayson.
This episode also sheds light on the often-hidden battles parents face within the school system. Nikki and I discuss the exhausting fight against systemic ignorance, where children with special needs are unjustly isolated from their peers. We emphasize the importance of peer modeling for social integration and emotional well-being, and how each small victory is a monumental step towards fostering a more compassionate and inclusive environment. Nikki’s candid reflections reveal a shared struggle and offer a sense of solidarity for other parents advocating for their children’s rights.
As we conclude, Nikki shares the transformative impact of finding the right educational setting for Drayson. From a boy who dreaded school to a child who now thrives in a supportive, nurturing environment, Drayson’s story exemplifies the power of belief and persistent advocacy. Nikki provides invaluable advice for parents on navigating the complexities of special education, the necessity of data-backed progress reports, and the role of a compassionate community. Tune in for a heartfelt episode filled with practical tips, inspiration, and a powerful reminder that every child has boundless potential waiting to be unlocked by those who believe in them.
Hello everyone and welcome to today's episode of On the Spectrum with Sonia. We have a very special guest today joining us Nikki Shipp. She is the podcast owner of Pieces for my Puzzle podcast, which I had the lovely privilege of being a guest on, which I had the lovely privilege of being a guest on. On the Spectrum with Sonia is a podcast designed to discuss autism spectrum, mental health challenges and anybody who's overcome any challenge. That is inspirational and leaves people feeling filled with hope, connection, love, support and empowered. So today, let's please join me in welcoming Nikki to our show. Nikki welcome. Thank you so much for coming on here this morning.
Speaker 2:Hi Sonia, Thank you so much for having me. I'm very excited to be here today.
Speaker 1:I'm excited to have you.
Speaker 2:So tell us a little bit about yourself and how autism got introduced into your life years ago because I was introduced with about autism, I should say because my son was diagnosed at the age of three, just after the age of three. So I didn't know much about autism prior to that. I'd always heard about you know, quote unquote autism, but I didn't really know what it was and so I didn't. You know, jason wasson was my first biological child and I didn't necessarily know or understand that maybe developmentally he was behind in certain areas. So, um, I noticed he wasn't speaking much and that was the biggest thing for me. Um, so we did have a wonderful pediatrician that um, one day, at one of his wellness exams, saw Drayson stemming, flapping his hands, and so she referred us to a developmental pediatrician and we were very fortunate and blessed as well to have another wonderful physician with us to help us with Drayson's care. But basically we found out that Drayson had autism at the age of three. But basically we found out that Drayson was had autism at the age of three and that put my husband and I both in kind of a tailspin, I think, you know, it's really common for a lot of families to feel that way, when you receive a diagnosis and you know nothing about it and you're not sure what to do and you know they hand you this list of things to do and say, okay, you know, come back in six months and let us know how you're doing, kind of thing. So that's, that's how we got thrown into the world of autism and and it was.
Speaker 2:It was a little daunting at first. You know, our developmental pediatrician was fantastic, is fantastic, but she just was also very real. Like he might speak, he might not ever speak, he might call you mom, he might not call you mom, and that was really devastating for me personally. So I had a little bit of a grieving period, and when I say grieving, not because I lost all hope or anything, it's just the idea of what I thought my son could become or the picture that the expectation I almost put in my head was there. I had to completely dispel myself from that and to realize that he just learns differently, he might communicate differently. Everything that I thought was going to be quote unquote normal was now not going to be normal. So after my grieving period of that and kind of letting go, I really delved into what type of care he would need, what type of resources I could find I kind of became that squeaky wheel of a mom and you know, excuse me asked a ton of questions, wasn't afraid to ask questions. I probably got a bad rap at some places because I was almost maybe probably too intrusive, to be honest with you, but I wanted to get that care for my son and um, and so we were very lucky.
Speaker 2:We put him into preschool, um at the age of three and a half and um his preschool teacher had a master's with special needs, in special needs education with an emphasis in autism. So she was a great mentor to me and taught me quite a few things about, in terms of educationally, what I could do for Drayson and questions I could ask. So I was very fortunate to come across that it still didn't inhibit moving like later on. It didn't inhibit some of the problems that we had at his school. But it was very, very difficult in the beginning for us to even find services and I think it took me almost a full year to qualify him, have him become eligible for services and then to find the care providers to provide care for him. So, fast forward, a year later, we finally got things implemented for him. We started to see progress. I was happy to announce.
Speaker 2:About six months after his diagnosis, he called me mom for the first time. So I knew, I knew in that moment that he was capable. The first time I ever heard him call me mom and um. And that's actually a really fabulous story, because I was headed to his daycare to pick him up and I didn't realize that, I didn't realize that my own child was calling my name. I heard some kid in the background yelling mom and I thought it was some other kid, you know like, where's this kid's mom? And I realized it was him. He saw me walk past the room and he was coming after me and I remember feeling very hopeful, like I realized in that moment oh my gosh, he's, he is capable and he's going to be able to do these things. So that's where my moment of belief started for Jason, about six months after his diagnosis. That's when I really started to understand that he was capable.
Speaker 2:I just had to find a different way to expose him so that it worked with his learning capabilities, so that he could then, you know, have a voice or try to communicate in some fashion, even if it wasn't going to be vocal. How was I going to get him to communicate more with us. So in the beginning things were great. We had a lot of supportive educators. It wasn't until he was in second or third grade we really kind of started having problems, which, educationally, sometimes that's a pivotal point in curriculum, right they kind of start laying on a little bit more heavier curriculum with the kids and that's when we really started having problems. Was was first, second, third grade. We really started seeing that the support wasn't what we thought it was going to be. And and also the when I say support, I'm not just talking about educationally supporting a child, I'm talking about the social, emotional component.
Speaker 1:Sure, and you know, and before we go more into that, I was just, I would like to hear from you just the fact that you were at one point told right, yes, yes, your kid might not ever speak to you, he may never call you mom, you may never ever say I love you, or anything like that. Right To finally hear you be getting called mom. Six, months after the diagnosis just walk me through what. What did that feel like for you Like?
Speaker 2:walk me through what was going on. Oh my gosh, I you know I had so many waves of emotion. First of all, I cried hysterically. I got in the car and I called my husband because I couldn't even believe that he called me mom. And it was so, it was so innocent.
Speaker 2:I was walking past the room to go get, to go pick them up and I didn't realize they'd moved into a different room. So he saw me walk across the window. The lady, the aid, was trying to tell him to stop and he ended up grabbing her by the hand and dragging this woman out of the doorway into the hallway to get my attention and I could hear this mom, mom, mama, mama. And I'm like somebody find that kid's mom. And I turned around like what is the problem? And I was like literally mid-sentence in my you know, like what is going on kind of thing is what I was saying. And I turned around and it was him. I immediately got teary-eyed. I looked at the aid and I said I'm so sorry. And she kind of looked at me like and I literally said to her I said he's never called me mom before.
Speaker 1:Oh, my God.
Speaker 2:So she started to break out into tears. I got into the car. I was hysterically crying. My husband thought I got into a car accident. I was crying so bad. And um, and I remember getting home and hugging Dresen and telling him that I loved hearing him call me mom. I told him. I said I love hearing your voice. I said I love hearing your voice. I said, son, I am, I love that you called me mom. Thank you. I wanted him to know that. I wanted him to also feel encouraged to continue to speak Right. So I wanted him to know how much I loved hearing his voice. I felt a sense of guilt for a moment too, because I didn't recognize his voice. So when I realized it was my son, I also almost felt a moment of guilt because I didn't even realize it was him. And after that, everything else, everything else that we've been through, that's been extremely difficult. I always go back and remind myself of that moment, always.
Speaker 1:And it's so. You know, this makes me want to cry, actually, because it's so emotional. Like I could feel the emotion. I feel like I was just there with you. I feel like you know what I was in that hallway with you, as you were sharing that. I feel like, oh my goodness, and just I can only imagine just the shock and just the you know the, the pride you must have felt in it, and just the shock and just the you know the, the pride you must've felt in it, and just the idea, just that whole idea of, oh my gosh, you know, he's defied the odds, despite what the doctor said, he might not ever speak to me. Oh my gosh, he's speaking to me finally, yay.
Speaker 2:Yeah, and I think that that was my I always call it my moment of belief. That was my moment of belief and I think that every parent has that with their child and it was the choice of what do I do with that. I wanted to keep going. I was like let's do this, like I want to explore this now because I'm seeing that he's capable. And if I had just gone into that state of, well, she said he may or may not.
Speaker 1:I guess he's not going to and I settled for that. Then where would he be today, right, right? So so we're going to be fast forwarding. Now he's in first, second, third, we're in early elementary school. Now you had started to say that the emotional and social support wasn't what you thought it would be Right, it was very antithetical to what you had experienced in the preschool years. Yes, yes, what changed?
Speaker 2:Well, we had moved to a different school. That had changed. We had moved out of where we currently were living and into a different school district. And here in the state of Arizona you can't. There's no boundary exemption. If you have a special needs child who has an IEP, you have to stay within the district of where that IEP goes to. So we knew we wouldn't be able to commute him to the school that where he was currently existing, where he was currently existing. We had heard great things about the school. We vetted the area we were moving to. I did my research, I did my homework. Like on paper it all looked fantastic.
Speaker 2:You know, initially, in the beginning, kindergarten went well, but it was as he got into first, second and third grade I just started to see some things within the system that that it was just, for lack of better words, a broken system. It wasn't just the educational component that I felt like he wasn't being supported on, but the social, emotional component, which is a really big deal for kids. You know, sometimes I think that's even a bigger deal than some of the curriculum that we have to that we put our kids through. But it changed with the educators and I felt for them in the sense of I could see where their resources were limited. There was limitations for these educators, so I could see that frustration for them. There was limitations for these educators, so I could see that frustration for them. But I also the administration was horrible in delegating the type of care that Drayson really needed under a special needs category.
Speaker 2:But I started noticing things. Like you know, we'd make special accommodations for Drayson. He had an aide with him all the time, so we were able to get an aide that would sit with him to assist him with tasks and doing things at school. I found out that they, you know, in the morning he would walk into the gate and he'd go towards his classroom. I thought he was going to stand in line and lo and behold, I found out that they would. The aide wouldn't allow him to stand in line and lo and behold, I found out that they would. The aid wouldn't allow him to stand in line.
Speaker 2:She was being told to take him to the library and make him sit by himself and I didn't know if there was a behavioral issue going on. Was it sensory? Was he overwhelmed Like? And then I started to notice that he at school pickup. They were asking us to go to the front office and not to the school pickup line, and, um, I didn't understand why that was happening either. So when I started asking questions, they you know, they sent me an email saying we just feel like it's better for Drayson.
Speaker 2:And so when I I started asking questions well, is there a behavioral issue or is he acting out? Because, if so, I want to know so that we can work on that with my home care team, cause I had a, I have a team of home care providers that help us, so I wanted to maybe devise a goal to help with that if that was the case. And they said, no, everything's fine, drayson's great. We love Drayson. He's such a sweet boy.
Speaker 2:And I thought to myself why are they removing him from his peers? And you know, they started telling. They finally came out that it wasn't for Drayson. It was because the, the aid had to clock out by a certain time and it was just easier for them to move him. It was just easier for them to take him to the library and sit by himself before he went to the classroom, and so I had to literally advocate for him to be able to stand in line with his peers, because I had to explain to them that the peer modeling watching his peers socialize, observing that, being around, that was important for him because of his social behaviors and not knowing you know, trying to learn how to integrate there was no peer modeling happening. They were just putting him into isolation.
Speaker 1:That is so heartbreaking and heart-wrenching. It's like it seemed like they didn't really, they were just doing the path of least resistance because they wanted to do things that were convenient for them. Notwithstanding the fact that you know and going to your point earlier, you know just the whole social emotional piece of going to school. Right, that's huge, because if you're not in a good environment, it doesn't matter how good the education system is. If you're not in a good social emotional environment where you can thrive, it only makes the academics that much more difficult and challenging, in my opinion.
Speaker 2:Well, yeah, and I even said to them just because he can't communicate to you how he's feeling right now does not mean that he doesn't communicate to you. How he's feeling right now does not mean that he doesn't have a feeling over this. You know, you don't. You are automatically giving him the belief that he's different from everybody else because you're isolating him and standing 10 minutes in the morning in line with his peers and 10 minutes at the end of the day in line with his peers is 20 minutes a day of peer modeling time times five times a week. When you, when you just if you quantify it and that's what I ended up telling the administration when you quantify those minutes of peer modeling that you're taking away from him, you are putting him further and further away from socially trying to integrate with people, right, and that was very upsetting to me.
Speaker 1:I can only imagine the pain that you must have felt, just having to witness everything you know, having to fight with the school system that had no little to no understanding, if any, you know, and even saying little understanding is being generous here, you know, you're having to advocate for your child, who's hurting yeah, because he's being treated like he's some kind of like prisoner for all practical purposes, right, it just seems.
Speaker 1:It's just so heartbreaking, and you know the fact that you're sharing the story. I wonder how many more parents share what they had like something similar to what happened to your son. What I remember when I told you when I was a guest on your podcast, you know about some of the incidents that I went through and and my parents do listen to my podcast, and so I think when they hear what happened to your son, I think I know, I know they will get a flashback of what they went through with me, even because you know it just. It's just the fact that, first and foremost, you know it just shows the power of ignorance. Ignorance and power of laziness on top of that, right.
Speaker 2:Well, and it's just, and you know, based on all the conversations you and I have had, sonia, you you'll know as well as I do this. What I'm describing right now is just one of several types of incidents that we had to deal with with with Jason. I mean even down to the progress reports. Like the progress reports I was receiving, they would tell me, oh, you know, he's met 30% of this goal. So when I would ask to see the data to understand how they were articulating that he had made progress on 30% of the school, they weren't providing data points to me and I couldn't understand where they were getting his progress. And oh, he's not really progressing here. But oh my gosh, here he at 60%. I'm like okay, but it doesn't seem like he's progressing or advancing. So what's going on here?
Speaker 2:And when I started asking questions about that, we kind of entered another stage of um of of a huge debacle, basically that I found out that they were not, basically they were not taking data to support what they were telling me on the progress boards. Because when I finally asked for the files, they said we can't give you a file. We can't give you a file because there is no data to support there is no data in his file and said over a two-year time span that they had missed 786 service hours because they didn't have data to support any of it. So they had been giving me progress reports for two years with no data to support where they were getting those numbers from.
Speaker 2:Wow, that's just flabbergasted yeah it was and that's when I always call it my mama bear internal rage moment really happened and, like you were saying, how many other parents has this happened to? We ended up transferring Drayson and finding a school that was much better suited for him. Suited for him and, um, and I remember saying, after we went through that whole ordeal with that school, I said to my husband how many other parents and families is this happening to that? We cannot. You know that that the amount of frustration because it's not just it's not just the logistics that you're putting up with, you're dealing with your own emotions I was, I was pissed, I was upset, I was sad, I was worried for my son, um, my anxiety went through the roof.
Speaker 2:I mean, it was almost like I felt like I was developing a form of PTSD, because every time I would get a progress report or I get a call from the school, I would trigger Sure. And so, get a call from the school, I would trigger Sure, and so I think that was the biggest thing for me personally, and that's how I ended up starting the podcast, because I said to my husband how many other families is this happening to? This Can't, this can't go on like this and we have to know how to advocate for our children and to be able to speak on their behalf, and that takes a lot of courage and it takes a lot of strength to do that.
Speaker 1:It does, it does and you know it. It just makes it so much more arduous when, there, you feel like you're basically traveling in this maze where you're kind of blindfolded, whereas everybody else has these, you know, are fully able to see and hear and everything, but it's like you can't even see well and you're getting at all at all because you're blindfolded and you're just going into hedge after hedge after hedge in a maze, whereas everybody else is finding pathways everybody else has access to, perhaps maybe throw some breadcrumbs, you know, to find their way out. It's just so, um, I just can only imagine how lonely this must have felt for you as well. You know it just felt, you know, for you to have to go through this, and you know, and I hear you talk about like you know, it just felt, you know, for you to have to go through this, and you know, and I hear you talk about, like you know, of course you know, part of being in special ed is it's for people who have a different way of learning right and they learn differently, right.
Speaker 1:It's not that they're any less intelligent or anything like that. And you know there are different types of special ed programs but, um, and you know there are different types of special ed programs but you know the you know. So you had certain progress goals. You know that was supposed to have been met by the team. What were some of the goals that you were hoping to have Drayson achieve with those goals in those meetings?
Speaker 2:You know it's funny because the way that the IEPs here are broken down are. You know it's funny because the way that the the IEPs here are broken down, or you know, by category. So of course he had, like his reading, his math, his comprehension, um, one of the things that I couldn't understand was the comprehension piece, because he didn't seem like he was still comprehending things very well. And, um, at the time and I was very blessed, I had a, I had a team of advocates, I did, I had a company that two women that were very, very pivotal in helping me. They were, they were advocates and they helped coach me and and even advocated for me in that room.
Speaker 2:But some of the goals were written as such that we, you know, I kept saying I think there's something more going on with his comprehension. Oh no, he's fine, I'm like, and the advocate said do you know, have you considered he might be dyslexic? And the school said oh no, he reads just fine. And I said it's not just reading. There's more to dyslexia than just being able to verbally read a page. He's not answering, he's not seeming to recall immediately. So we read a simple paragraph and he couldn't recall who, who in the story and I was like something's going on. So we ended up pushing him to have him tested and they didn't want to test him. They denied the test. So I requested an independent evaluation, which I don't know if a lot of parents know this, but you have the right to requested an independent evaluation, which I don't know if a lot of parents know this, but you have the right to request an independent evaluation If you are not satisfied with the evaluation that the school has done, sure, or if they don't want to. So I ended up going straight to district and I requested an independent evaluation.
Speaker 2:And, lo and behold, after his assessments it came back that he not only was dyslexic, but he had dyscalculia and dysgraphia. I am not the educator, okay. What upset me was that how come nobody was open to the idea of that? If you know within your profession what some of these things might look like, I have to.
Speaker 2:That was a level of trust that I had to try to have and I couldn't have it anymore within them. Wow, you know. So they would tell me oh, you know, he's not doing really well with comprehension, but he's getting there. He increased by 10%. He wasn't increasing at all, he wasn't advancing at all because they weren't ever assessing it. Social emotional goals were written in there and his social emotional goal was really low too. Well, when I found out that they were pulling him out of a line and not allowing him to be around his peers, or letting him go doing something else at recess and not kicking him outside with the rest of them right and trying to to put some things in place to allow him to be socially integrated, um, he wasn't hitting the goal on social emotional either.
Speaker 1:Right, you know, and I just feel like that's such a travesty in the field of education that you have these people who are supposed to know a little better and who are supposed to at least you know. You know if they're red flags, that you know, maybe there's some things that need to be evaluated. If you know a person is having trouble, you know, with reading comprehension, a person we already know is on the autism spectrum, Is there maybe perhaps another contributing problem to this too? Because you know it's so? It just, it's just a travesty that these, it just seems like those people didn't want to do anything. It seems like they they'd rather just sit and be lazy. It's, it just seems to me. And what you're telling me and I don't.
Speaker 2:I don't necessarily blame the educators, I think what's? Because I see both sides of that. They are limited in their resources. They've got 30 kids in a classroom, they've got, you know, all these things. And then they have to deal with also what the administration is telling them.
Speaker 2:And you know, I taught in higher education for a better half of a decade, so I understand the the kind of the behind the scenes dynamic of what happens. You know, from a performance standpoint, schools have to produce numbers, they have to produce results, they have to do all this stuff. So if it looks good on paper for them, that's what they're gonna try to maintain. And districts and administration higher level administration is always barreling down on educational teams about what they can and cannot do. So it's like I was fully aware of that. But I think I was just more in a state of shock that, as I was actively coming to those higher ups, to that administration, to district, the amount of pushback that I was receiving, that's when I had my breaking point and that's when I realized that he would never be successful at that school because it would be a constant fight. They would constantly, they were constantly going to combat me with his goals and and not do right by him. So I made a decision to vet other schools and I transferred him out.
Speaker 1:You know, and then I was a process like for you to transfer him out of the school district and into another one. That was hard.
Speaker 2:It was very difficult. First of all, we had to qualify for some scholarship dollars because to go to a private institution was going to be costly. We're very lucky here in Arizona we have some wonderful, wonderful schools that are specifically for kids who have autism. But what I realized, even within that realm, was that there were certain schools that wouldn't take Drayson because he was too much of an advanced case. So I had to also field the range of autism schools just to find the school for him range of autism schools, just to find the school for him. And I we'd already been rejected. We got rejected, um, I think, three or four other times on applications and I remember the school where he's at now. When we interviewed I realized that that was going to be the school for him, because the director of that school asked me a very important question right off the bat when I met her.
Speaker 2:And that was what would you like for me to know about your son? And she said that I was so taken aback I literally got really teary eyed. I think I almost started to cry a little bit because I said to her my son is a wonderfully sweet boy who is poorly misunderstood, and it still. It still makes me emotional, sonia, because no one had ever bothered to ask me that and um, and that really hit me hard and I remember getting off that interview with her just saying, please, god, let him end up in this school. Like I know this would be such a good school for him because of the level I mean we're talking.
Speaker 2:A director of a school coming to me and saying, what would you like for me to know about your son? I mean it was just an amazing thing. So we were lucky he ended up getting in and he's been. He just entered his fourth year at the, at the Autism Academy here in Arizona and I could not be more pleased and more proud of that institution, of that organization, as well as as my son. But it took us years to find I mean years for us to find that home for him.
Speaker 1:You know, I'm so happy you were able to find something for him. And when you talk about his journey in education, now being at the school he's at, he's been there for four years Um, what do you notice? Like, what do you see different now? Like, how do you see a change? Like what have you noticed? Just transformation.
Speaker 2:He he's happier, he doesn't seem so anxious. Um, you know he was entering high levels of anxiety, um, at this other school. I mean, he would cry every day going to school and I would cry after I would drop him off because I would feel so bad that I left him crying. Um, and you know, I realized sometimes it's a detachment thing, like I don't want to leave my mom. But this wasn't it, it was something else and I knew it. Now, I mean, he gets upset when he doesn't go to school. Um, now he, you know, even with through summer break, we had to do a countdown for when school would start and he would, you know, I think, like the week before school. I said you have one week and he was like, yes, school, like you know, actively excited.
Speaker 2:I didn't realize until this last open house that we just attended for for the new school year. I didn't know that he was popular. I mean, all these kids were saying hi to him in the hallway and he was saying hi back. I didn't know that he would reciprocate like that to see him saying hi to kids or oh hi, you know he would. Oh hi, peyton. Oh hi, you know, you know. Oh hi, tim, like he's.
Speaker 2:He's such he's blossoming in his own way. It might still not be the most ideal version of what society thinks that is, but he's doing it, you know, and I'm asking like little open-ended questions. You know, like the other day I ran into, like the bed and I stubbed my toe and I was like ow, and he's like, oh my gosh, are you okay? And I was like I'm fine. He's like did you hit your toe? I'm like I did hit my toe. Like little things like that never happened, even up until, you know, two, three years ago.
Speaker 2:And we started to notice that he was more relaxed, he was calmer, he was happier and and everyone there is super supportive. I mean, the culture is completely different there and that's what I needed for him, you know. And he seems more playful in a lot of ways too, in his own way. Sometimes you don't see it emotionally, you might not see it, but he also reciprocates. You know, if I put my hand out, he'll hold my hand. If I ask him if I can have a hug, he'll hug me. All of these things weren't happening four years ago, you know, and I think it's because he was displaced and he felt displaced and he felt, um, you know, he didn't feel supported and and he doesn't, and and I'm still his voice. He's 12 years old now. He'll be 13 in February, so we're getting ready to go through preteens. I'm so excited for that.
Speaker 2:But you know, now I know I can speak to him and he understands what I'm saying you know which which has before he was so closed off and shut down, which is before he was so closed off and shut down. And I think sometimes we don't realize as adults how influential we are with any child, not just autism or not any child, how we influence children. I don't think that sometimes we realize in such a way of how we can sway that for a child and create a really positive experience if we want to.
Speaker 1:Absolutely. You know and it seems like you know you've done a lot of work here and it's commendable all the research you've done, all the help you sought. You know getting the advocates, getting the special education attorney to help out. You know doing all what you know getting the advocates, getting the special education attorney to help out. You know doing all what you know investigating other schools. You know using also your motherly instincts as well, right to you know really propel forward and push Drayson forward. And you know the way you describe Dray Jason. Now I can even tell just by how you speak about it. It's like night and day. It seems like two different people.
Speaker 2:And people who haven't seen him in a while will say that, oh my gosh, he is doing so well. Oh my gosh, like I can't believe that he, you know, said hello or, you know, said goodbye, or gave me a high five or you know, just anything like. Even people that haven't seen him in a while have noticed the difference. And that's when I realized, you know, I realized that it's just more moments of belief for me, right? I feel like every day now I'm entering more moments of belief than I am being worried or scared about his potential, and it just makes me want to keep going forward more, you know, and Drayson's school experience was one battle, but we had our own battle, even with the state here, to get him services. He was denied programs.
Speaker 2:I had to write, write appeals and petitions and and I tell people all the time that, yeah, it's exhausting and it's a fight, um, and you have to keep yourself centered and you have to keep yourself in a in a way that you can still be you, because you do feel like you're losing yourself a little bit when you start going through all this. I mean, I remember walking out of a lot of the meetings at Drayson school, going. Everyone's telling me this, am I crazy? And that's where you really have to tap into your self-belief and your intuition. And I tell parents that all the time. Two things don't underestimate your children and a whole always hold belief that they're capable, and the other is hold the belief that you're capable and always trust your intuition.
Speaker 1:Those are the things I always tell parents, you know, is that you have to hold belief and you have to trust your intuition Absolutely.
Speaker 1:You know you can't just and it's so important that because the way I look at it is you know you are the number one advocate for your child and you're the only one, a lot of times, most often, that can make the difference and anything you do, everything you do, everything you say, makes a difference, you know.
Speaker 1:And if it's, you know and it makes me emotional how to think about this, but you know, I honestly feel, because I'm on the spectrum, as you know, and I honestly feel like, if it wasn't for having a strong mother figure, you know, who believed in me and believed in my education, um, I had a teacher, um, a fourth grade teacher who ended up becoming my tutor starting in fifth grade, and if it wasn't for her seeing my potential, you know it's it took a lot. But I also feel like, you know, because the school, when they, when I was younger, they told my parents Sonia would be lucky to make it to eighth grade or get to high school and I was to be anything, you know, if anything, I think they thought I'd just end up in an institution or relegated and you know, but to surpass what everyone said that I couldn't have achieved. You know, that's a feeling that it's hard to even put in words at times. The feeling of that, and knowing a lot of it, is because you had strong people in your life that believed in you. Yeah, yeah.
Speaker 2:And I think that's one thing overall I feel like I realized was really lacking, that I never knew. I didn't know that belief was lacking so much within society. Like I was talking about that moment of belief, I wanted everyone to believe the way that I do about my son. I want everyone to believe that children are capable to do these things. Without bringing my preconceived notions, all of my preexisting know how I was brought up, all of that. I had to put that all out the window. I had to basically clear the slate and find a new way of belief and that's. You know, that's a really hard thing to do, but if you don't understand, if you don't see that as a core, fundamental, then it will be even harder. It will be even harder. It will be even harder to find those resources or to go. Why am I even doing this? You know he's not. They said he's not going to talk anyway. Why am I going to even do this?
Speaker 2:You know, and that's that's a mindset, and I, you know, and here's the thing is, you know, and I tell Jason this all the time I'm like son, you are capable of anything you want to do, and I and I told him when he was born before I even knew he had autism, that he was meant for greatness, and I still tell him that today. And he needs me to believe in him so that he can go on and believe in himself, because when we're young, when we're kids, we don't know what that means, we don't know that. We, you know, we don't understand that. So I have to be the mentor to cultivate that for him.
Speaker 2:You know, and I think that that's so, so important and there's so many wonderful care providers out there that do amazing things for our kids who are on the spectrum, and I think that they're just those added mentors that we need in our lives to help support, you know, and I wish there was more of it out there, just societally anyway, not just for autism, but just in general. It would be nice if we all were a little bit more like that. But you know, at least that's my solution for changing the world. I guess I don't know. I'm just kidding.
Speaker 1:Oh my gosh, your story is so amazing. I feel like we need you to write your story. We really do. Your book needs to come out too, of course. You know you and I know some great people who could help out with that.
Speaker 1:But I think you know that your story is so inspiring, so powerful. What are some of the things, though, that you've noticed, like, what are some of the biggest achievements thus far that you've seen for drayson, where you felt, maybe before you're like, oh my gosh, is this ever going to happen? Is this ever going to happen, apart from him at six months later calling you mom? Right, what have you seen the biggest achievements thus far in this new school and this that he's been in now for four years? Like what? What are some achievements that you even were like, oh my, my gosh.
Speaker 2:Yeah, the, the, the reading and the comprehension, the knowledge that he's in taking cause, even though he's not verbal all the time like he, he speaks, and still in fragmented, fragmented sentences. So he doesn't necessarily. It's not like I can sit with Jason and have a full back and forth conversation with them, but like simple example, the other day the television was on, it was some documentary and there was a picture of the Statue of Liberty on there and he walked in the room and said that's the Statue of Liberty? And I was like, do you know the Statue of Liberty? And he goes, yeah, and my husband said, well, where's the Statue of Liberty, where is the Statue of Liberty? And he goes, yeah, and my husband said, well, where's the Statue of Liberty, where is the Statue of Liberty? And he says in New York.
Speaker 2:And we were both like, okay, so clearly he's retaining information and we didn't realize that he even knew some of this stuff and so just little things like that. We're noticing he has culinary classes at this school, so he's trying new foods, so he will come home and and he gets kind of a little, you know, he can have something extra if he's tried a food that he doesn't really like you know him even being open to doing that. Um, because they've created an environment for him at school where you know he doesn't feel anxious, he doesn't feel nervous, he doesn't feel scared, and so we've noticed that he's trying new foods. Um, he came home the other day and told me he he, he tried a lemon roasted potatoes and I said oh, did you like those? He goes yeah, and I said would you like me to make them sometime? He goes no, thanks, okay, well, you know so.
Speaker 2:I mean he tried it. So we're noticing that. The biggest thing for me is the social connection, which I know is not academic based, but it's been amazing. We had some company over a few weeks ago recently, and they brought their daughter and he actually went outside to go play and we had like three or four little kids here and he went and put on his swim trunks and ended up jumping in the pool with them and we couldn't believe it, because that's not a normal initiation for Jason. Wow.
Speaker 2:So we're seeing him start to try to initiate, just even being in the same social circle, and he kind of laterally played. He played a little bit, he they were jumping off of the deep end, so he kept saying look at me, and they were taking turns jumping off the diving board and I just remember thinking he's asking for their validation. You know he's hey guys, my turn, okay, now you go. And I was just like, oh my gosh, he's initiating, he's engaging, um, and these kids were. So the kids were beautiful, they were wonderful, you know, and, yeah, heartwarming story, yeah, heartwarming story.
Speaker 1:So you know it just puts a big smile. You know I can't just have the biggest smile on my face just listening to this and seeing. You know that you know things are moving along. You know, you know things are heading in a good direction for him and you know he, he sounds like he's actually even getting more confident too, within himself, his ability, as well, as you tell his story.
Speaker 2:Yeah, he's almost, I think, getting a little too confident, but I'm okay with it. Like I said to him the other day, I said you look so handsome, I know. Oh, okay, I don't. I said, you know you're handsome? He's like, yeah. And then, um, the other day he got his haircut and I saw him in the mirror afterwards kind of like checking out his haircut. You know, it's like those things matter to him and they should, like you said, instill the confidence that he needs. But it was so funny because I was like you're such a handsome boy, he's like I know. I was like, ok, well, we're not going to have to worry about that department, I guess.
Speaker 1:Yes, so what would you advise like parents, like what, what are some key takeaways? And like some tips and tricks you want to give to parents who may be going through a challenge right now with their kid, whether it's, you know, getting them the right services or you know, watching them like hurting and not knowing what to do. You know, or like what, are some things that, what are some key pieces you could advise people.
Speaker 2:Um, I think you know, one of the biggest pieces of advice that I can give parents is um, and families who have loved ones on the spectrum is you know, remember that you have a choice. You have a choice and how you wish to delegate and find services for your child. It doesn't mean that that's easy, okay. So I always tell people don't be afraid to ask questions. I mean, I can't even tell you the probably the names I have been called for being inquisitive or curious or pushing. I really had to put myself in a mindset of basically just not giving a shit. I can't care about what other people think about. I can't care about why he has autism Okay, cause that's another big one, don't you want to know why? You know what? I'm going to leave that to the researchers. I have time to help my child. That's what I have time for. I don't have time to sit here and spin my wheels as to the why, because if I focus on that, I'm taking less time away. I'm taking that time away from how I should be helping him, right.
Speaker 2:So I always tell parents do what you need to do to get in a good frame of mind, because it's hard and it is. It is upsetting, and I'm you know. I sit here before you today sounding like I'm, you know, completely polished with this, but I'm not. I mean, I have my moments too. I feel angry, I feel upset, I feel hurt. I still go through those waves of emotion. Allow yourself to feel what you want to feel so that you can move forward to provide the very best for your child. Don't be afraid to ask questions and if you feel that someone's not a right fit, then don't go with them. You trust your gut. You have to trust your gut. If you feel like it's not going to be the right move for not just your child but for you as a family, don't do it. We've let plenty of providers go just because they weren't a good fit.
Speaker 1:Right.
Speaker 2:You know, and that is difficult and not saying that any of that's easy, but it's got to be something that it's a have to. It's a have to if you want them to try to even have a shot at hitting that next level or advancing or becoming capable in the way that you want them to become capable. You know you have to expose them to the very best of what you feel is best for you. You know the very best resource that fits for you and your family you know, and um don't hold a limitation.
Speaker 2:There's there's so many different things out there to explore and learn and to understand and to know and to use it also as a as a wonderful experience. Drayson, I know more. You know not just about autism now, but I know more about intuition and compassion than I ever thought I was going to know in my life.
Speaker 1:And it opens your eyes up to a lot too. You know, and having that, you know be tapped into and, you know, having that realization like, oh my gosh, I really do have a really good intuition and I oh my gosh I've never felt so passionate about anything like I think I have now, or having that, oh my gosh, I do have a lot of this compassion I've been holding and now I'm finally giving it out Right, it just probably brings about a whole different dynamic to your life as well and realize that if you don't, if you aren't confident in that, that's okay too.
Speaker 2:I mean, I had advocates in the room with me. I hired an advocate and I realized, you know, and some people think, oh my gosh, that must cost so much money. Was it an investment? Yes, it was. But if you know that you're going to pay somebody, you know, let's say, at the time when I had my advocates, you know, you know you pay 75 an hour or whatever that number looks like. Just know, though, that you're that's going to help you to get the result that you need. So, and I realized that that's a finance. But I had to figure out how to budget all of that too, because I in my mind, it was going to work and anything it took, it was going to work. There are resources out there that that offer scholarship money, that offer funds, that do that. You know state, state services, there's so much. But you can't settle with the word no, you can't settle with the rejection If they tell you go find somewhere else because there's going to be a resource somewhere else, you know. So I, I, I really coach a lot of parents on that as well, because you know they'll say, oh well, they just told us no, like make another call, find somebody else.
Speaker 2:Let's, you know, be the squeaky wheel, and I don't like entering that stage either. You know I didn't want to be mean to people, or assertive. You know, sometimes when you get assertive, people feel like you're being rude or mean. I was always worried about that. I really started to not worry about it, though, when I started to see my son coming home from school crying every day and going to school crying every day. That was it for me. You know, and I think that you know, parentally, you enter that stage of you know, I don't, I just can't care about hurting other people's feelings right now.
Speaker 1:Right. Well, especially, I think you know, when you're seeing somebody close to, that hits your heart, close to your heart, like your child hurting, you know, because a school system is failing to deliver yes, what they were supposed to have delivered, yeah, and that's that was heartbreaking for me too.
Speaker 2:I was devastated. I was devastated and then I was almost a little mad at myself because I trusted them Like I was almost felt like I trusted this team, this educational team, to carry him. So I did enter a stage where I felt a little upset at myself too, you know but it was reasonable reliance.
Speaker 1:Here, you know you was, you know, only reasonable relianceiance. You depended on them to do what they were supposed to do and I think that's normal. I think any parent, whether you have a kid with autism or not, anybody who sends their kids to school, they're gonna reasonably rely and hope for the best that their kid is going to learn and be taken care of right in a way that schools are supposed to teach. And, you know, handle your kid Right.
Speaker 2:Right, and to know that there was a person there. He had a para, he had a para professional with them from the moment he walked in the door to the end of the day. So he had the support. He had the support. It was the other part that wasn't being executed. It was the. You know. Are we integrating him? Are we really tracking these goals? Are we taking the data points? How are we structuring his curriculum based off of what's written in his IEP? It was all of that. That. That just wasn't happening.
Speaker 2:And, um, and you know, here in Arizona, each school receives a different set of allocated dollars for special needs kids. Um, and so I knew that they were receiving a special amount of money for Jason to attend that school. So for them to tell me that there wasn't that resource there, I was like, well, hold on a second, because there should be allocated funds because he qualifies. And they were shocked when I asked that because most parents don't know that. And so they were shocked when I asked it because I was well aware, because I did the research and I also had advocates to speak to about it too, so they were confirming I was.
Speaker 2:I was using other professionals for my to to back up the information that I was researching and receiving. So I I did. By no means did I do this by myself. My husband and I have had a huge support team over the years and it took us years to find the right, the right care team as well, you know, um, but that's that didn't happen overnight either. So I always tell parents don't give up, right, yeah, don't give up.
Speaker 1:Well, nikki, you have been so inspirational, so moving, and you know and I really hope everybody who's listening to this and this is one thing I want to say is you know from a person who is on the autism spectrum and it's so easy for people to look down on people on the spectrum and think of them as less than and have these misconceptions about them, and it's so easy for people to be quick to judge. Yeah, at the same time, people don't know what it took for us to even function in our day to day and I hope when people listen to your story, nikki, people have a better appreciation and understanding of what it was like for people who are parents of kids with autism, hearing some of what they had to go through, like hearing like your story and what you had to go through and the fight and the persistence and the never giving up, giving up, and no matter how many times you guys got knocked down, it was just you kept standing up and kept ready, kept ready to go and pull, pull the punches when you needed to pull the punches. Yeah, that's where you know. And just hearing that story, hearing from other people who've gone through stuff, and I know that it's so and people have a lot of misconception. But let me tell you, I hope that everybody can learn one thing it always helps when people are understanding, can give compassion, are not quick to judge yes, it's quick to help. Rather, and if you can't help, at least don't go and hurt.
Speaker 1:It's so important that people you know also, when you see a family, when you have, when you see parents with kids who are on the autism spectrum, also not judging those parents for being bad parents or you know, like you know and making or being making snap comments and judgments. Because the thing is and I hear about this all the time, right From people, I'm a therapist by profession and I also hear, you know, I heard stories like about the kid family who had to get off a plane because the kid needed to eat a meal at a certain time, and I remember someone messaged me and said see, that's example of bad parenting. No, actually, that's not bad parenting. You can't force someone to eat, a child to eat, when they're not going to eat. You know and this is true of anybody, I think, and I'm pretty sure if any parent could chime in who listens to this who have kids. I don't have any kids, and I never. I never wanted to be a mom, so that was a thing, for myself.
Speaker 1:I never only thing I wanted to parent was a dog and I, you know, I just feel like you know, even then, right, you know, when people are not hungry, they're not going to eat. You know it just like, and. But I feel like this is the. We got to just be more compassionate, reach out, help one another, you know, because this is how we're going to change the world and understand this too. People with autism are not less than, albeit just because their journey and path looks a little different than yours. It doesn't mean that you know they're any less than you or any better than you. You know, it's just. Our journeys are just different in this maze of life.
Speaker 2:Yep, absolutely, and some of the most extraordinary things I have learned, um have been from people with autism.
Speaker 2:You know, I mean even speaking with you, sonia, having you on the show, like I have learned so much perspective and dynamic from you, um, as an adult, and that's something that I take very much to heart because I know that that's going to help me to understand my son better too.
Speaker 2:You know, drayson, if you, if you take the time to look at people's attributes, right, if you take the time to really look at them and see them, you will find some extraordinary things about people. Drayson is one of the most extraordinary people I know and I'm blessed because I feel like he's the best parts of me. He's the best part of me and I think, like I said, even speaking with you, sonia, there are so many things that you've even opened my eyes to as an adult person on the spectrum, because I don't know yet I haven't entered that stage with Drayson, right, and that perspective is so important for me to hear because I know that I can keep that in mind as he's growing up and have a different outlook. You know, we've we've gotten so conditioned to think inside the box and I just my hope someday is that people can be OK and that becomes the new norm is thinking outside the box.
Speaker 1:That's really what I want for everyone. That's exactly you know partly why I do what I do. It's like for people like you, so like my book that's coming out in 2025, you know, it's like for people dedicated to people like yourself. You know are in it, in it to win it.
Speaker 1:I say in it to win it right, you know, you know who've been touched by autism, why I written that book, why I run these marathons that I've run right, it is for people and once again, you know a mile will be run in your honor with the Chicago, new York City marathon. And I just feel, like you know, I'm a very spiritual person and one thing you know I always get every time I pray, is this phrase always comes to my head that God loves autism. I always get it.
Speaker 2:I pray.
Speaker 1:So that's one thing. I want to also end this with folks is that God loves autism. Thank you all for tuning in and please like, like and subscribe. This is available on all audio podcasts on the spectrum with Sonia. Please leave a review if you so shall feel inclined. Of course, all reviews are great feedback. All right, take care.