Adam Dayan speaks with the inspiring Jessica Salonus, a mother of a child with cerebral palsy and a passionate special education lawyer for children with disabilities. Jessica opens up about her journey raising a child with special needs and her professional experience fighting for the rights of children who require special education services. The episode wraps up with a heartwarming conversation between Adam and Jessica’s son, Grey. Don’t miss this empowering discussion on resilience, determination, and advocacy.
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ANNOUNCER: This is Curious Incident, a podcast for special needs families, and your window into the world of special education. Special needs parenting can be challenging, and we want to make it easier by providing you with the resources you need to help your child. Still deep into the world of learning differently with your host, special education attorney Adam Dayan.
ADAM: I’m pleased to present my next guest on the Curious Incident podcast, Jessica Salonus. I’ve known Jessica for the last 10 years through our mutual affiliation with the Council of Parent Attorneys and Advocates. She is a powerhouse attorney and an amazing mom. Jessica is a special education attorney serving clients throughout the state of Tennessee. She uses her personal understanding of what it means to be a parent of a child with a disability, to assist families, to secure the services and accommodations their children with disabilities rightfully deserved. Jessica, thank you for being here with us today.
JESSICA: Absolutely, my pleasure.
ADAM: So let’s get started with some basics. Tell us a little bit about yourself.
JESSICA: Oh, sum that up in like three words. Life mom lawyer. It’s pretty much what a juggle on the daily is trying to be there for my family and supporting my child and also supporting children with disabilities. It’s a real passion of mine and I love, love, love doing it.
ADAM: So we’re here to discuss your experience as a parent of a child with cerebral palsy. Can you help us understand what cerebral palsy is?
JESSICA: You know, it’s crazy how you don’t have much of a working knowledge of something until it personally affects you. And cerebral palsy is one of those things for me. Had no idea what it was or how it affected children and how many children it affected and adult to like. It’s kind of weird. I look back now and I was in high school with a kid who undoubtedly now that I know had cerebral palsy, but we didn’t even know what to call it. You never ask somebody, what do you have? Because that’s rude. And so I didn’t understand kind of what he was grasping with until my own child. But it’s just a disorder of the movement and muscle tone. It changes by where the brain damage is located and the brain damage being from a loss of oxygen and that’s typically in utero or during birth. One of the most prevalent disorders, but it’s a varying range of severity based on how much damage was done and where the damage was done in the brain and how it affects the limbs, the muscles, the movements, the speaking, the cognitive ability, all of it.
ADAM: So that’s a good segue. Talk about the different degrees of severity with cerebral palsy.
JESSICA: Absolutely. It’s helpful because a lot of people understand autism. We see that a lot more narcissizing understand the severity of autism ranging from kids that are socially more impacted to where they’re nonverbal, right? It’s a huge range of autism. Well, it’s the same thing with cerebral palsy. It’s a huge range. If you were to look at my son right now, if just sitting in a chair, you would have no idea yet cerebral palsy, but you would notice when he got up to walk. His gate is impacted. His speech is impacted. It varies based on the degree of damage to the brain. You don’t know what that is until, and sometimes they can’t totally tell you, but they can look with MRIs and see where the damage is located. They can see and kind of give you a clinical understanding of what it’s going to look like or how it’s going to impact, but no one can really tell you for sure until you just get there, right? So that was one of the hardest things with getting his diagnosis was they said he may never walk. He may never talk. I mean, you just don’t know. You hate wanting to fast forward, but you’re like, how bad is this going to be for him? And how is this going to affect his life? But to that point is it is a varying degree. And oftentimes the diagnosis and what the child ends up becoming or achieving is two very different things. And it’s just very dependent on the right interventions and stuff, but there are five types of cerebral palsy and it’s a little technical, but I think it’s helpful to understand the first being spastic that’s also referred to as hypertonia, hyper, meaning tight, high muscle tone and jerky movements. They call it like the teddy bear syndrome. If you’ve ever seen children or adults that have their arm kind of at a 90 degree and it’s really, really rigid, that’s more of your spastic type. And that’s the most common about 75% of individuals with cerebral palsy are the tight spastic type. And that’s what that’s where you’ll see the jerky movements. Rigidity, rigidity, I don’t know how to quite say that word, but that’s where they’re fighting their own tone issues, right? The other type is ethtoid, also called dyskinetic. That’s a combination of hypotonia, which is as opposed to hyper, hypo is low muscle movements and then the hypertonia, the stiff muscles. That’s caused by damage to the basal ganglia. That’s what my son actually has. It’s only affects about 3% of individuals with CP, but it makes it very, very hard to treat because those children like mine are moving target. The other type is called a tactic and that’s caused by damage to the cerebellum, causes issues with just balance, coordination, voluntary movements. That’s really the most rare. It’s about 2% of individuals with cerebral palsy, but that’s just where there’s going to be more tripping. I represented a little girl with this actually, gosh, 12 years ago or so, 10 years ago. It was very, very hard to convince the school that she needed assistance because they referred to as the girl that trips and falls a lot. I’m like, well, she has cerebral palsy though, but they only think of the very, very spastic. The fourth type is hypotonic. I’ll refer to it as atatonic. That’s low muscle tone caused by loss of strength. That’s floppy muscles. That’s part of what my child is. It’s the ones that have less control. You’ll see very weakened cores, weakened necks. A lot of times it droopy neck. You’ve got mixed type and that’s caused where the brain is damaged in more than one location. This is more of a severe impact. That results in multiple types of CP. You see that in about 16% of cases. Every child is different, but they put you in one of these five categories.
ADAM: When was your son diagnosed with CP and to what degree is he affected?
JESSICA: I was induced and ended up in a C-section after a very long day and a half of labor. He was my first child. I went in there with no expectations. I thought, I’m a lawyer. I’m not a doctor. I’m here. They tell me what to do. I did not understand the questions to ask then or the alarms to ring. When he was, I knew something was wrong when we were in the C-section room and I heard cursing and screaming and craziness and people rushing in. He didn’t cry. I came out. I didn’t see him. My husband did. He was at Garwon. They had to retrieve him. He’d gotten stuck and lost oxygen apparently. We did not know that until later. We knew he’d gotten stuck. We knew that the birth was really traumatic, but we didn’t know the extent. He had to be intubated, rush to the NICU, and we spent about a week there and they just really couldn’t give us an answer as to what had happened. They just kept saying, sometimes it’s just a hard start. He’s going to be fine. We were discharged after about a week and mind you, this is my first child. I had no idea what to expect, but I certainly didn’t expect that. The guilt, the mom guilt of, what did I do wrong? What’s wrong with my baby? He was able to do things like he healed eye contact, he breastfed. We thought he was a typical baby in our view. He was rather large, which I took as a mom badge of honor. He had a whole bunch of those chunky, lovey fat rolls. When he wasn’t quite sitting and holding his head fully up and he wasn’t crawling, those things you start hitting around six, seven, eight, nine months, we kept asking our pediatrician, like, is there anything wrong? They’re like, no, he’s just, he’s just a big boy. Boys are later and he’s big and you’re doing a great job. He’s fine. I had a friend whose baby was three weeks behind mine and we were face timing together. Down in Louisiana, you know, her, her little girl was cruising all around the table and my son was not. My pediatrician told me I was being basically dramatic and I was overwiring. There was nothing wrong, but she would make the referral to early intervention anyway. This was about the 11 month mark. I got stuck at the office and my parents were there to meet the early interventionists that came out to do the initial assessment. I walked in about one minute late and she’d already kind of gotten there and she just looked at me and said, can I ask you a question? I said, what? She said, did he lose oxygen? I was like, yes, he was at one and she said, I’m not a doctor, but I think your child has cerebral palsy. That was the first time I’d ever thought that heard that. We quickly got and they qualified him and he qualified right then for early intervention services and they got therapies going, but then we still had to wait for the medical diagnosis, which we were able to get into Le Bonner and Memphis and got met with a neurologist they didn’t MRI and he came in and said the same thing. Your child has had an epoxy brain injury, loss of oxygen. I’m actually glad he’s not in here for this. I was going to emotional talking about it. You know, it was just shocking, the grief and the wow, how did I not know this for a year?
ADAM: Well, how did the experts not know this for a year? I mean, the checkpoints that you all made it past without the hospital team or the NICU or the pediatricians or the other people who met your son, I mean, that is chilling.
JESSICA: It was rough. We had the same thoughts, but people always ask, I’m like, hindsight is 20, right? Now I could have seen it. It had even my second child. I would have seen it more probably. I just didn’t have anything to compare to. And you rely on the expert. Like that’s what I tell people when a doctor tells me to take this medication, I’m going to take this medication when the doctor says, I need this surgery, you get that surgery. And so, you know, I’m relying on these people that tell me he’s fine and he is obviously he was not fine. So that started our journey. And at the time I was an employment lawyer, I did employment litigation. I represented individuals, plaintiff side. So I did a lot of ADA work. So it wasn’t a too far of a leap for me to switch over to kiddos. But I didn’t mean to. It’s just going through it personally. You know, my husband’s looking at me like, you’re the lawyer. What are we signing? You know, you start signing all those things to get early intervention and sign up for services. And, you know, at first I was just like every other parent, like, thank you. What can you give me as well as, you know, and thank you. You know, after you get through a little bit of grief, you realize, and we’ll talk about this more, but you realize that it’s not what can you give me. It’s what does your child need? And how can I get that for my kid? That’s how we found out. And that’s when our journey really started and my life really changed. And I would say absolutely for the better, not that I would ever wish this on my son or anyone else, but he has totally changed my life, my career. Helping him has helped me help so many other people. I mean, you know, it’s the only silver lining. I kind of see in all of this.
ADAM: I mean, it’s so many things wrapped into one. It feels like the news was devastating initially. Understandably, I’m sure it felt like some kind of relief to know what was going on.
JESSICA: It did. It did feel like at least I’m not crazy. Something is not typical. So it felt like, OK, at least we have a diagnosis and now I can label that and and get him help that he needs. But at the same time, I mean, and I tell this to every parent, you’re not wrong to be sad. You’re not wrong to grieve the life that you thought your child would have, you know, and and particularly when they get diagnosed so young, you don’t know. And every doctor just kept saying we don’t have a crystal ball. We can’t tell you. So your brain goes to the worst. You know, I pictured my child unable to speak to me, unable to walk, unable to do all these things. And you know, you go really dark really fast and there’s a whole period of grief. And that’s OK. And I tell people that I tell my clients that all the time. And then, you know, they kick themselves because they didn’t get diagnosed sooner. They didn’t know. And I’m like, you’re not you’re not the doctor, right? Like you’re just mama bear and you’re doing you’re doing your best. And I can say that now confidently on the other side of it. But I can tell you and I was in the thick of it those first year or two. I referred to it kind of as a dark ages because I don’t know. You just put one foot in front of the other and you survive and and you learn. But I learned so much. And it was just kind of like drinking water out of a fire hose, trying to wrap my brain around a diagnosis. I had no idea what it meant and a life that was going to be totally different. So there’s just a lot. It’s a lot to unpack there. And so I just my heart goes to every every parent who’s getting that news for the first time. And I just want to tell you it’s going to be OK. Your life is going to be different. Your child’s life is going to be different, but different as an always bad, right? And you can learn so much and can be so much better, but it’s just really hard getting through those first first stages of grief.
ADAM: I think that’s so important for parents to hear.
ANNOUNCER: If you like what you are hearing, please let us know by subscribing to the Curious Incident Podcast and letting other special needs parents know about it too. If you have thoughts, questions, comments, or would like to suggest ideas for a future episode, we’d love to hear it. So email your feedback to podcast at dionlofirm.com.
ADAM: So anything else you want to mention about your son, talk about who’s part of his health care team.
JESSICA: He’s got quite the team. And over the years, that’s changed too. I will say it has gotten much more reduced and much more manageable as he’s gotten older because some of the issues he’s grown out of or they’ve been fixed with procedures.
ADAM: That’s amazing.
JESSICA: Yeah, it’s great. But for the longest, I mean, a joke that I lived on I-40, not just being a litigator in Tennessee, but I-40 is our interstate that runs across the state, by the way. But because Vanderbilt, which was where we got most of our care was, and we live in Jackson, which is about two hours away. So we had lots of Vanderbilt appointments. So early years, the first, I would say six or seven years, it was a lot. And he had quite the team. But what I loved about them was they did coordinate. He had a pediatric neuro specialist there and she’s been with us since he was 12 months old. She was previously a physical therapist and then went back and got her MD and she focuses in neuro. And so she has a specialized cerebral palsy clinic and has a team. And really, I would say she is our quarterback. If we had to have a quarterback besides me, I tell parents this too, one doctor is not going to give you all the answers. So it requires a team of care and it requires just continually looking and researching what else is out there. And a lot of times we’re the ones telling our doctors about some new program that we found.
ADAM: I think the coordination piece often gets overlooked. It does. The providers and experts need to be communicating with each other. It’s really important for everyone to know what’s happening in other therapy sessions. And if they don’t, it’s going to be a less effective.
JESSICA: Right. Absolutely. A lot of times it’s in isolation. Here’s an example, his pulmonologist and his ENT at Vanderbilt were great. I don’t know if it has anything to do with CP, probably not. But he ended up having three sets of ear tubes. He had a bunch of adenoid issues, tonsil issues. So he had by the time he was five, he had his adenoids taken out, tonsil taken out, three sets at your tubes. And he was still just always so sick. And a lot of that has to do with the cerebral palsy too. There’s so many effects of cerebral palsy. People don’t talk about, but one of them is because of his low tone in his trunk and just general weakness, he can’t cough and be as productive as your eye. So where we would cough and get things out of our lungs, a lot of times it would settle. So when I tell you, we had continuous pneumonia, I mean, continuous pneumonia when he was little. And so when we had to do all these things, all these treatments, we were chest compressing all the time with like a thing to break it up, kind of like you would with cystic fibrosis, kind of like that treatment to keep it broken up. So he battled, he just battled so much of this, but it took the pulmonologist and the ENT also to collaborate and realize he had a delayed swallow. So as your eye would feel the food go back and then we would open and swallow, he was aspirating and had a delayed swallow because it was going back and he wasn’t swallowing in time. So they did what was called a laryngeal injection. Like, and that was, that took our, our coordinated team. And I will be forever grateful for that because that really, really was a game changer for him in terms of ending the cycles of pneumonia and aspiration. Wow. Was that they went in and did a injection where they plump that up. I don’t know how to describe it, but the back of your throat, that way it would trigger the swallow quicker so that he wouldn’t aspirate. And so we did a couple of those and I mean, it was, that was a game changer for him, that and feeding therapy to quit aspirating.
ADAM: Do you want to clarify what difference that made for him?
JESSICA: The endless rounds of constant respiratory issues and pneumonia really, really subsided after that. That, in addition to the feeding therapy too, to help with the swallow and not aspirate, that was a game changer because he was just so sick. And when he was so sick, he was missing so much school and I was missing so much work and, you know, it’s just this vicious cycle and you’re just like this poor baby. He cannot seem to catch a break. And I would just dread going into particularly the, the winter months and being like, please don’t be around us if you have a cold. It really hits him harder than anybody else in the room. But he’s fortunately, we are so much better on the other side of that. I was very scared with COVID thinking, Oh, here we go again. Like he’s going to be the one that gets hit worse. I mean, terrified. That was like a whole retrigging event. I was, I was going back to, well, if you had pneumonia so bad at five, like, what’s this COVID situation going to do? But fortunately, he’s, he’s, he’s been okay through that as well.
ADAM: Amazing. Okay. So we’ve got the neuro, the pulmonologist, the ENT, any other imp regular pediatrician, of course.
JESSICA: And then speech therapist, occupational therapist, physical therapist. And then we do, he does intensive therapies every summer as well, which I can talk about in a little bit when we talk about treatments. One thing I forgot, psychologist is very important as well. You’re going to need that for school. Just because it’s a physical disability doesn’t mean that there aren’t mental components. He’s doing so well, but, but I think that that’s important is the mental health component too. And just to keep an eye on that so that, you know, your kids get the help they need if they need it.
ADAM: Can we give him some credit right now? Can we pause and give him some credit? Yeah. I mean, what he’s had to battle.
JESSICA: Uh-huh. Absolutely.
ADAM: And the strength he’s shown to deal with his stuff and get to where he is. I mean, that’s a, that’s a strong kid.
JESSICA: He’s an incredible kid. I don’t know how I’m so lucky to be his mom, but I am. He’s an incredible kid.
ADAM: Sure. Absolutely makes a lot of sense. So what treatments or therapies have been most successful for him?
JESSICA: For the first few years, you know, I wasn’t scrolling social media. I was reading every article I could find on cerebral palsy, trying to educate myself and every trial and every, everything saying if he qualified. And I will tell you the one big regret we have in terms of treatment is that we did not keep his core blood when he was born. We didn’t know. It was a stereotypical birth. Rewind 13 years ago, our doctor was like, unless you have a history of cancer, leukemia, you know, you probably don’t need this. I tell every parent now disability or not disability, you keep your baby’s core blood and core tissue because it’s a little bit pricey on the, on the forefront, but then you’ve got at the rest of their lives. If they’re ever in a car accident down the road and have a traumatic brain injury, if they ever need, there’s so many things for it. So I’m a big proponent of that because we did not save that and had we saved that and banked that he would have already received it immediately pretty early on because they were doing Duke. Dr. Kurtzberger at Duke was doing trials with your own core blood, but we didn’t have our own core blood. So I literally stalked this poor woman and her email for about five years being like, if you open to siblings at that time, we didn’t even have another child. But I was like, I will get, you know, I’ll get pregnant tomorrow when we wanted another one anyway. But I was like, if you ever open this up to siblings, we were absolutely banking. Please let us know. And so we just stayed in touch with them and they eventually did open to siblings. And in December of 2018, his brother was five at the time he was seven. He got 600 million cord blood stem cells from his brothers cord blood and that did not cure his cerebral palsy body means. So you’ll see him in a second. But it dramatically helped that core stabilization. He quit falling as much. I mean, when I tell you, it was like overnight after a couple of months, we were, we were just like, when was the last time we saw him really wipe out? And he’ll tell you he’s a professional follower. Like he, his physical therapies are about how to fall right so you don’t hurt yourself worse, right? And we’re like, he’s not been following. It was incredible. His handwriting went from illegible to legible. It’s still not great, but I’m his mother and I have terrible handwriting and I don’t have CP. So I think some of that he got honest, but it really was a game changer in certain terms of helping some of that fine motor and core strength. So I think that’s one of the most successful things in treatments that we’ve done for him and by far the most impactful. That’s pretty high tech. It’s amazing. It’s amazing. Like chills. I still remember where we were and we got the call that his brother was a match because there’s only a 50% chance that they would be close enough that it would work. You hear about a lot of families going, you know, out of country and stuff to get them from donors and things like that. But we were fortunate enough to get into Duke. That’s what I tell parents all the time is take disability out of it, but for every kid, bank their cord, blood and tissue because you never know what you could use it for down the road. And fortunately, we were able to use his brothers. And so I’ve got these pictures of his brother being there by his bedside. And it was just an infusion. Like they hang it up, but he was vanna-widing the drip bag. Like you’re getting my blood.
ADAM: That’s a special brotherly bond.
JESSICA: It was really sweet. And his little brother loves mac and cheese and gray would never touch it. And his little brother loves mac and cheese after he got this cord blood. I’m not kidding. He was like, I want mac and cheese. We were like, this is so weird.
ADAM: It took on his brother’s taste.
JESSICA: We were like, now, if you started in popcorn, we’ll know that this is really legit. He’s he does not eat popcorn, but, but that was, I would say the most beneficial treatment.
ADAM: I’m sure people who are hearing this are wondering about the costs and expenses for treatment and the devices and supports that you were able to secure. So let’s talk a little bit about that. And has there been any financial support made available to your family to assist with these things?
JESSICA: Every state’s different. So I would say check with your states, but my child doesn’t have a cognitive impact. So a lot of times that’s a disqualifier for in terms of state funding. Typically the more the cognitive impairments get more support or extreme physical, he’s again, he’s he can go to typical school. He can talk, he can walk. He’s just not, he doesn’t qualify for that severe of need for kind of grant funding or state funding. Very fortunately, we have good insurance coverage that covers chronic conditions. Now, I would say to look at there’s a lot of states and it’s becoming a thing here in Tennessee. We’ve got it, but I don’t know about, you know, other states of I would look, but it’s becoming prevalent across the country is if you have a kid in that kind of gap area, right? Like where they’re not severe enough that they need, they qualify for for benefits, but they’re also, you know, pretty have functioning, but do need some therapeutic needs. We have what’s called the individual education account. And that’s where you can go to your school system and say, I don’t want the IEP. I want my state and local funding. And so, for instance, like Tennessee, it’s about eight grand that you would get. And you can apply that towards your therapies, towards anything that qualifies to support that disability or tuition at some schools that would qualify. But you’re forfeiting your public school IDEA rights if you do that.
ADAM: OK, so definitely need to check with your specific state on it. And I know you’re local to Tennessee and I’m sure parents can learn from your experience dealing with your local school district. Tell our listeners a bit about your experiences, the obstacles, the challenges, the pitfalls.
JESSICA: I deal with them professionally and personally, personally, they’ve been really wonderful to my kid, but that’s because I haven’t really asked much from them. He was, he was enrolled through the school system from ages three to five. But once we hit kindergarten, he’s at the private school that’s near our home and where I went to school. And so once we pulled him out of the public school system, you know, obviously, they’re not responsible for his therapies at that point anymore, except for he has an IEP for speech. And so they do provide speech therapy to him and they come to the private school to do it once a week, which is fantastic. And she’s a wonderful therapist. So I would just say, depending on which route you go, even if you’ve got your kid in private school, you still have a right to some public school services. And so make sure that you’re utilizing those because that helps, that helps offset the cost of our private speech that we have to do too. But professionally, I mean, I battled them all the time getting supports because not all kids are fortunate enough to be as advanced as he is with his condition. If you look at it on paper, it would probably appear a lot worse and it looks in real life for him. And that’s a testament to him. But a lot of kids don’t have that opportunity to be able to be wanted. So they have to be in the public school system. And when you have to be in the public schools, that’s fine. It’s great. It’s what’s there for. But make sure that you really utilize all the services and don’t accept the, well, we don’t do that here or we can’t do that. We’ve never done that before. I love being an IEP meeting. And I’m like, this is, this is the most we’ve never done this for anybody. I’m like, well, great. That that that’s a good thing because it’s individualized and it needs to be what the child needs to needs to access our education.
ANNOUNCER: If you like what you are hearing, please let us know by subscribing to our podcast and letting others know about it too. If you have thoughts, questions, comments, or would like to suggest ideas for a future episode, we’d love to hear it. So email your feedback to podcast at dionlawfirm.com.
ADAM: Sometimes where parents get themselves into a little bit of trouble is trusting the school district year after year after year when they’re being given information that may not be accurate. And so I think your point about challenging what’s being said to you and emphasizing your child individualized needs and what your child needs to function. That’s really, really important. And if the people in the room aren’t on your side in that way, then it’s time to find outside experts who will be 100%.
JESSICA: I have a tell any parent. It’s really hard, particularly when it’s your own kid. First of all, your emotions, you’re in your feels. It’s really hard. And a lot of times the parents says that they just feel so defeated. It’s them versus 10 educators in the room. And all they do is a focus on the negative about your kid and their behavior or whatever the case may be or how they’re doing all they can do to help Johnny. This is all we can give. This is all we’ve got. So I think sometimes it’s helpful because you’re so personally attached and it’s your kid and you’re dealing with the emotions to have an outsider in the room. It’s worth the money to get an advocate or at least to a consult with one of us with a lawyer. There’s so many times I look at a kid’s IP and I’m like, actually, can I see that the two years before this to? We’ve just changed the date on this. The goals have remained the same. The services are the same. Everything’s the same. And you can just look at that and no, Johnny’s not getting what Johnny needs. I mean, there’s no way that any kid stays the same year after year after year. And so it’s helpful, I think, to have an outsider’s perspective, particularly an expert in the area of special education because you just don’t know what you just don’t know. Parents be themselves up over that. I didn’t know that we could have a one-on-one and he could have been included in Gen Ed instead of seven hours a day. In a self-contained classroom. I know you didn’t because you trusted the school. Just like we trust doctors to tell us what medicine to take. You trust educators to tell you how they can best educate your child and you’re not a teacher and they like to throw that at parents all the time. I’ve been a teacher for 29 years and this is all we can do. And, you know, parents feel that and you feel attacked. And there’s a lot of advocates that are free or reduced to and there’s a lot of parent-side organizations that you can access. I just think that if you’ve got any child that’s got any disability, whether they need an IEP or not, even if just a 504, you know, a lot of times people don’t realize they can get therapy through a 504. They can get so much more and the school’s not going to tell you that because telling you what more you can get, what’s that equates to dollars, right? And ultimately it’s about the dollars.
ADAM: A sad but very true reality.
JESSICA: Yeah. So I just really think that getting someone to help assist you with that process is the best money you’ll spend for your kid.
ADAM: Jessica, looking back now, is there anything you would change with the treatment plan or therapies gray has received?
JESSICA: The only thing I would have done differently is trusted my gut sooner and taken him to get third, fourth opinions in those first years or those first months. Not that I think that that had a huge impact, but the earlier the intervention, you can get the better. I mean, they can start that at three months old and so we missed that little block trusting people telling me that it was in my head and I was being paranoid. But that’s the only thing I think that I really regret.
ADAM: Has gray encountered negative experiences as a result of the CP with his peers?
JESSICA: Oh, I mean, of course, but I will say that kids are resilient and they are kind to their core, particularly at early age. And that was one of the things that was important to us and that factored into why we put him in private school is it’s smaller and he’d have had the same peer group from two years old through 12th grade, whereas in the public school system, they would bounce from different school as you articulate through elementary and then to middle and they’re often different schools. And sometimes that’s even a couple years and you go to a different one and you get new peers and I just wanted him to have a solid core of friends that have known him from the beginning. And so it’s really nice. Most of those boys and girls that he’s been in class with since he was two. I mean, he’s just gray to them. The braces, kids don’t see that when they’re little. Now the ones that come in are like, oh, what’s up with that? But then I was always like, that’s just gray. I mean, for the most part, I will say his experience has been very, very positive. There’s always a few situations that are tough or somebody says something ugly or particularly in different environments for a while there with his stutter. He would be afraid. We’d meet somebody new and he’s like, well, can you tell, can you tell Johnny that I have CP so he understands? Like he wanted me to be the buffer so that because it was somebody new that he had met. So there’s that kind of thing. But for the most part, he’s really had a very positive experience and he will tell you everybody needs to see me for who I am and not for my disability. Like he’s just so wise, I’m a true amount of his age. You know, he’s had a great, pretty great experience so far. And I credit his friends with that.
ADAM: Nice. I’m glad to hear that.
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ADAM: So Jessica, parents often set milestones for their children and their development. And those often differ with children with special needs. What have been some of your proudest moments as a parent of a child with CP?
JESSICA: It’s really full circle from getting told there’s no cure for this, but therapies can help, but he may never walk or talk. You picture your child basically having no quality of life under those circumstances of a very, very bleak to then fast forward two years later. I mean, we just threw the bag at it. We, the whole kitchen sink, we gave him every intervention we could find that we could do music therapies, water therapies, physical therapies, horseback riding therapies, occupational therapies, this kind of just so much. So when he first took his first steps, they actually called me. There was the ones I saw in person. He walked at the lake and we just, I mean, I just lost it. I was pregnant with his little brother then and just remembering like, Oh my gosh, he’s going to be able to walk in to meet his brother. Oh my gosh. That must have been amazing. It was amazing. I’m just immensely proud of every, every time he does something new this summer, he started after we got back from our last and we did three weeks at Napa Center out in Denver. And that helped a lot with the core. It’s a lot of core and balance work. We fight that all the time to keep him stable. He’s normally scared to feel out of control with his body, but he got on the tube and now the kids and animal and he won’t quit tube and behind the boat. And I’m like, if you’d have told me you were going to do this last year, I would have never believed you, but he’s just always shocking us with new stuff.
ADAM: What do you want our listeners to know about setting expectations for progress and regression?
JESSICA: Definitely fight the regression. You will regress if you don’t keep, keep going. And unfortunately I see that a lot with schools. I kind of say they get worn out with providing the therapies at a certain age. A lot of times you’ll see they’re like, we don’t actually do occupational therapy in middle school because how you are is how you are. Nothing gets me more on my soapbox and upset than statements like that. I firmly believe that you’ve got to keep fighting, particularly as they’re going through puberty, their bodies are changing, they’re getting older. Or they’re going to unlearn some of the good skills that they’ve picked up in their therapy. So we do balance and I think that’s a struggle is balancing life and therapy. Good therapy, the kid to death, but he would miss school functions and being on the fishing team and things like that. And so it is a fine line. You’re balancing it, but don’t accept the whole, this, this is where it is and this is how it’s, it’s going to be. Because nothing ever stays the same and what’s worse is regression. So we just keep pushing and I think that that’s what I tell a lot of parents is just keep pushing and don’t accept that we don’t do therapies in middle school or high school anymore. That’s ridiculous. Or you are how you are. Every kid can improve.
ADAM: Finally, before we bring in great and I’m very excited to bring in great. Can you share any resources that you’ve found to be useful in your journey?
JESSICA: I can’t say enough about COPA. It’s the Council of Parent Attorney Advocates. Even for myself, that’s how I first learned of this network of wonderful advocates and attorneys. And it’s so great and raw, right? Every year we get together and you know, it kind of gives me the, gives me the to go battle the schools another year. It’s just been a really great resource. Yes, it’s like like minded people. We’re all there for the kids and it’s just so fun and, and so inspiring. I think that that’s been wonderful. And I tell all of my clients that too. Listen, I would love, I don’t have enough time in the world to always be on everybody’s speed doll and answering your questions all the time. You need to know when you need me and you need to know some of your basic rights. So you need to go get, we do, they do certification trainings for advocacy. I mean, I tell parents all the time it’ll be the best money you’ve ever spent is getting, you know, these services and training yourselves. And a lot of them are free too. We do a lot of free webinars, but there’s a whole parent side to the training of every conference. There’s a whole advocacy side. You can get certified as an advocate. I tell people that I tell all my parents that look, I want you to need me, but not that much. I need you to be able to maintain your kids IP on the daily and enforce, enforce their rights on the daily and know when you’re getting janked around. And you don’t know that until you know that, right? And so I just think that if you’ve got a child with an IP, you behoove yourself to get some, some basic training on, on their rights and knowing how to uphold those and how to, you know, best advocate for your child. Should we bring in Grey? Yeah, let’s do it.
ADAM: I’m so happy you’re here, man.
GREY: Me too.
ADAM: Did that feel like a long time I was talking to your mom or a short time?
GREY: Pretty short, but.
ADAM: Yeah. What’d you do out there to keep busy?
GREY: Check my fancy tea. I’m tied to my dad. Yeah. That’s on friends.
ADAM: Nice. This is your first time in New York City?
GREY: Yes, sir.
ADAM: What do you think of it?
GREY: Very. Um, like interesting.
ADAM: It’s interesting. What’s interesting about it?
GREY: The people.
ADAM: The people. A lot of people here, right? So many people.
GREY: So much.
ADAM: And how old are you now? You’re 13. Wow. That’s amazing. So I have a couple of more questions for you. Tell me a little bit about your interests and hobbies.
GREY: I like to watch sports, play back on sports. I like to go fishing and be on a fishing team. I like to.
ADAM: You’re on the fishing team?
GREY: I like.
JESSICA: Um, you’re a fine dining connoisseur. Yes.
ADAM: Wait, I got to go back to the fishing for a second. I just went fishing a few weeks ago. How often do you fish?
GREY: We usually like every weekend when we go to our lake house. But, uh, but not so much during the fall. Like in winter because, um, because they don’t get to relate that much in the fall in winter.
ADAM: OK. What kind of fish you like to catch?
GREY: It’s like any fish, spring, bass, catfish.
ADAM: Um, I caught some really cool trout a few weeks ago when I was fishing.
GREY: Um, been chapped fishing two times. It was awesome.
JESSICA: Yeah. Tell them where you’re going this next month to fish.
GREY: I’m going to Louisiana to catch red fish and trout.
ADAM: That’s amazing. I hope you catch a lot.
GREY: We’re going to catch a lot.
ADAM: You get to keep them or you got to throw them back. Keep them. Nice. You’re going to eat them? Yes. I understand you like to watch some Netflix shows, right? Your mom told me. Yeah. What kind of shows you like to watch? Um,
GREY: like, I don’t think it’s. I don’t think it’s.
ADAM: I’ve been wanting to watch that show. Is that about one of the Carolinas? Yeah.
GREY: Yes.
ADAM: You ever been to the outer banks? No. Me neither.
GREY: Me neither. Yeah. No.
ADAM: I hear it’s nice.
GREY: That’s nice on TV.
ADAM: Maybe your mom will take you there. You’re a mom and your dad. And are you on your, are you the assistant manager of your football team? Yes. Tell me more about that. Um,
GREY: like it’s really cool because I know I can’t really like pay for, well, but I know that I can be like a part of the team and like I really enjoy. Because I get to be with my friends and like, fill up waters and get footballs and that stuff.
ADAM: Dude, that’s amazing. Yeah. Can I give you a pound? I love that. That’s so cool. What would you like to be when you grow up, man?
GREY: Oh, what my mom does. Like I really want to help kids like me, like, get the, like, education they need.
ADAM: That’s amazing. That’s so cool. Well, I wish you good luck. I’m so happy that you’re in New York City. I’m so happy that you’re in this studio. If you got a great mama, you already know that I’m sure. And, you know, she’s, she’s in addition to being a great mama. She’s a great lawyer. And I’m sure she can answer all your questions about being a special ed lawyer. If you ever have more questions or want another person’s opinion, I’m happy to talk to you about my experience. Reach out to me anytime. Talk to your mama first, though. And listen, man, I wish you so much good luck. I hope you continue loving school and keep up the good work.
GREY: Thank you.
ADAM: You got it.
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