Life in the IEP Tribe
Join us as we dive into the world of special education with two educators who have walked the same path as many of you. In addition to teaching in self-contained and collaborative settings, our hosts bring a unique perspective to the challenges and triumphs of raising a special needs child. From classroom strategies to heartfelt family moments, they offer practical advice, empathy, and a community of support. Discover how their personal experiences can shed light on your journey and gain valuable insights into navigating the complexities of special education both in and out of the classroom. Welcome to the tribe!
Life in the IEP Tribe
Life Gets Better: The Messy Journey of Parenting a Child with Special Needs
Lindsey Workman takes us on a deeply personal journey through her experience raising a daughter with Tuberous Sclerosis Complex (TSC) - a rare genetic disorder causing benign tumors throughout the body. When Daisy was diagnosed at just three months old after experiencing infantile spasms, Lindsey found herself navigating unfamiliar medical territory with little community support.
What follows is a candid conversation about the realities of special needs parenting - from the early days of diagnosis where doctors cautioned against Google searches to the present day where Daisy, now approaching her ninth birthday, has made remarkable progress. Lindsey doesn't shy away from discussing the difficult parts: the seizures, behavioral challenges, self-harm incidents, and the isolation that many special needs families experience.
Perhaps the most powerful message comes when Lindsey reflects on her decision to keep Daisy in a "bubble" during those early years. "Don't do that," she advises other parents. "Go out into the world early, because you will wish that you did." This hard-earned wisdom highlights how isolation, while sometimes easier in the moment, creates bigger challenges down the road for both child and family.
When Lindsey couldn't find local support specifically for parents of young children on the autism spectrum, she created it herself. Her Facebook group "Caregivers Raising Children on the Spectrum" has become a safe space where parents can connect without judgment, share resources, and simply know they aren't alone. As she eloquently puts it: "Life is messy and it's nice to be messy with others."
Join us for this moving conversation that reminds us all that sharing our stories openly not only lightens our own burden but creates community where isolation once existed. Whether you're a parent, educator, or healthcare provider, Lindsey's perspective offers valuable insights into supporting families navigating complex medical and developmental challenges.
Welcome back their perspectives and experiences and so on and so forth. We've been able to have other teachers, we've been able to have different service providers, and one of the things that we really wanted to do when we kind of started this whole podcast idea was let's get everybody at the table that is involved in that IEP world, that finds themselves in IEP meetings and say, hey, let's create a place where we can all kind of sit and chit-chat and learn from each other. So today, this evening, this morning, whenever you're listening, we have yet another guest, and this one and I say this every time, but I mean it this is a special guest, like we have another special guest. But I'm not going to go into all that, I'm not going to give out all the details. I'm going to let Mrs Curtis do that because— Mrs Curtis.
Speaker 1:Yes, okay, I'm going to let her do that. All right, you got it, curdy.
Speaker 2:We've got—so. This person started as a parent of one of our students and I think I consider her. She's still a parent of one of our students, but I also consider her a friend, and so we have Lindsay Workman and she's also our boss's wife.
Speaker 1:So real quick then, before we even move on, what is something that you can tell us that nobody else knows Like? Is he like in witness protection, or is he like a closet Swifty, or no, no, he runs his mouth too much to be in the witness protection.
Speaker 1:Gotcha, gotcha. I get that, definitely not a Swifty, so yeah. So we're going to talk about something tonight that, like I'm not real familiar with, I can't even say it right, and so what I'm also going to do now is I'm going to go ahead and let Mrs Curtis lead us in. All right, I keep calling you, mrs Curtis. I'm sorry, laura, I don't think you ever use Laura.
Speaker 2:It keep calling you Mrs Curtis. I'm sorry, laura. Sorry. I don't think you ever use Laura, it's usually Curdy Curdy.
Speaker 1:Curdy.
Speaker 2:Because we have one that calls me Curdy. So let's see, we've been. Is it four years now that we have been working with your child, lindsay? Since kindergarten, kindergarten, first, second. Yeah, so this is our fourth year getting the privilege of working with Miss Daisy, and so there's been a lot of growth and a lot of learning, and I have to say that I think Daisy's probably the first and only student that I know that has this, the rare disease that she has, and I'm going to let you go ahead and let us know. Like, what is it that? What is it that Daisy has been diagnosed with?
Speaker 3:So Daisy is the first person I've ever known or do know or met with a tuberous sclerosis complex, and that can be the only time we have to say that we can just call it TS or TSC. And that is a rare genetic disorder that causes benign tumors to grow in pretty much all her major organisms and on the outside of her skin, her eyes, her heart, her brain, her kidneys and just on the female side, when they hit puberty in their lungs.
Speaker 1:In their lungs, mm-hmm, oh, that sounds—.
Speaker 3:And I'm not sure why just the ladies get to enjoy that.
Speaker 1:Huh.
Speaker 3:Wow.
Speaker 1:Yeah, that's like I did not expect you to end up on the lungs Right it's like yeah, that's pretty crazy.
Speaker 3:And it's once they hit puberty. So when I heard that, I stopped learning more about that because we had enough in front of us to learn about.
Speaker 2:Right.
Speaker 1:Right.
Speaker 2:So, one step at a time. Because was that? How old was it? Was it something that she was born with or did it develop?
Speaker 3:She was born with it and how she got diagnosed is at three months old she started having infantile spasms and we took her to Wolfson's and she had one white patch on her leg and that is how they made the connection from infantile spasms and TS, because with tuberous sclerosis they get several skin conditions and one of them is white patches. The other ones are, you know, the freckle looking ones on her face and like the other one is like raised, raised, almost like an orange-feeling type patch, and she got all three of them and so that's how they connected through many other tests that they did while we were in Wolfson's, and that was the first time I've ever heard of that.
Speaker 2:And so when you first heard about that, so what you know, what was your, you know the experience of learning about that, I know, I'm sure it was confusing and it was overwhelming.
Speaker 3:I had no idea what it was. I didn't know what that meant for the future. What it meant for right now. Future, what it meant for right now. And the doctor told James and I not to go and get on Google because that will they'll freak us out. James didn't. I did Right. I think that's kind of typical, yeah that works.
Speaker 3:I wanted to be prepared, I wanted to know what to expect, but because, like autism, tuberous sclerosis is a spectrum, people can have it and you don't know that they have it. And they can go their whole lives without even being diagnosed because they don't know that they have it. But, in true Daisy fashion, it was very clear.
Speaker 2:She's like, hey, y'all, it was very clear.
Speaker 1:She's like hey, y'all, she lets you know, right?
Speaker 3:Yes, and so what were some of the key challenges during that time? For us it was just the seizures, Because she was three months old and it started with the infantile spasm, so that was the scariest thing, of course. And then knowing we weren't sure if she was going to be able to sit up by herself ever or if she needed assistance to walk or be able to feed herself. But she was able to get on with early development and we had somebody come to our house and help her with OT and it took her longer to learn to walk, but as soon as she did she was running.
Speaker 2:Very good. So that early intervention, that's what we keep hearing over and over again.
Speaker 3:Yes, early intervention. So important, so so important. We got in like as soon as her diagnosis. We have somebody coming out the next week.
Speaker 2:Very good, were there things that they told you that she wouldn't be able to do? That she's doing now.
Speaker 3:They said you don't know, she could be in a wheelchair, she could never talk, her delays could keep her at a three-year-old indefinitely. It's just, you never know what you're going to get. You don't know what the outcome's going to be, just you never know what you're going to get.
Speaker 2:You don't know what the outcome is going to be, and so what are some of the conditions?
Speaker 3:that go along with her TS. So with that, like I spoke about the skin issues and the tubers that grow the seizures, so she's also diagnosed with epilepsy and hers are called absent seizures or vocal seizures, where she just kind of looks frozen.
Speaker 2:And if you don't know how to spot it.
Speaker 3:You don't even know that she's having one. That is true.
Speaker 3:She's never had a major seizure, thank God. I would never want to see that and my heart goes out to any parent that has to see their child go through that kind of seizure. But still the same. She could have these seizures back to back to back to back to back multiple times a day and they make her tired, they make her aggravated and they can cause delays. And then another thing that comes is so they call it TAND T-A-N-D, which is a behavioral umbrella just for children with tuberous sclerosis, because of the aggressiveness that can come with the diagnosis sudden rage, hyper fixation, obsessing self-harm, which Daisy has had. Every single thing that they list with TS she has encountered and come across and has to conquer each day.
Speaker 2:And how does that affect your life on a daily basis and your family's dynamic? How does that impact you?
Speaker 3:It's very challenging, it's very, very difficult, but I can say for the whole family that it gets better. Yeah, we're doing better, she's doing better. She has many specialists that she sees and we finally got her in with a behavioral specialist that has given her medicines that seem to be night and day for her with her attitude, and y'all know like she's not a patient person and that's one thing that really upsets her is when she has to wait and that can cause her to self-harm herself and get upset. And immediately after the behavioral therapist put her on a medic, a medicine, I feel like we all saw a big change in her aggressiveness.
Speaker 2:I agree.
Speaker 1:Yeah, I got the look, it's like let's wait and see where you wanted to go.
Speaker 3:But it's just now, even though it's hard and challenging, it's just now feeling like it's getting easier. As a family In the beginning a family In the beginning we felt like we had to live in a bubble, and COVID happened right when we got her autism diagnosis and right when we started seeing those behavioral issues. So it was much easier just to live in a bubble. And don't do that. Don't live in a bubble. Go out into the world early, because you will wish that you did.
Speaker 2:I know that's a conversation we've had with each other. I know we've had it with you and James as well, and we try to talk about it and say, yes, do the hard work now, because they get bigger. It's so much harder. Bigger, they get bigger, they get stronger and it's it is, it's they're easier to um, so like manipulate not no well, I mean physically manipulate.
Speaker 1:When they're smaller, you can right yeah but get them.
Speaker 2:Get them used to doing things and get into a. You know, this is what we do here and this is what we do there. When they're smaller, you can, right, but get them used to doing things and get into. You know, this is what we do here and this is what we do there. When they're younger than trying to take them out and I think I've shared before about my experience taking Xander to Publix and him just sitting down on the floor and I think he was about Daisy's age and he's up I'm not going anywhere because I wouldn't give him whatever it was that he wanted at that time and he plopped his little rear end down on that floor in Publix and screamed and of course, I wanted to go. No, I'm never taking him to the store again.
Speaker 3:That's what I did. That is what I did, and that is a mistake. That is a big, big mistake, and I still don't take her to stores. Yeah it's hard. I tried, I have tried, but I can see, because of me not doing that, how much harder I made it on the both of us.
Speaker 1:Well, I think that would be, that would be a needs.
Speaker 1:They kind of need. They kind of need. Some feel like they need some permission to fail at times and to do things that, to try the hard things, and and it all fall apart. And that's OK, because that's that's how we progress, that's how we progress as human beings, that's how we progress in our relationships, that's how we progress as human beings, that's how we progress in our relationships, that's how we progress as families. And so it is important to take those shots and to fail and to try again and to get back up, because nothing's going to go right the first time. It just doesn't work. Life doesn't work that way.
Speaker 3:Right, and it's much better to do that and to feel embarrassed and to feel ashamed which nobody should than to feel isolated your whole life.
Speaker 1:And so what it does, is it and I'm just kind of listening to you talk about this is that it gives you this. I mean it helps you as a parent to grow as far as your strength and your willingness to—we can always say that we don't care what people think, but we'll battle that right. We battle. Nobody wants to go somewhere and have people thinking certain ways of them, but you know, when putting yourself in those situations becomes the norm, you're going to grow as a person. You're going to grow as a parent becomes the norm. You're going to grow as a person. You're going to grow as a parent, and then your child gets the best you that you can give them, and so that, yeah, I mean that's like top tier, necessary work, but it's hard and it's hard to do it by yourself.
Speaker 3:They get a better shot at being out in the world too. I think that's it's hard yeah. It's really really really, really hard.
Speaker 2:Well, like Jared's, shared some of his experiences where he's been at family functions and like okay, I got to go now.
Speaker 2:Us too. I can't do this now, but then, like you said, you just keep trying and the more you do it, the more they get used to it and understand okay, this is what I do here, and that's one of the things we notice about Xander is he knows what is expected in his environments and he will—that's one of the ways we realized that that little booger could sit still for longer than three seconds is that we went to a school assembly and there he was sitting on the floor with his classmates where, anywhere else we go, he's running all around said, okay, yep, we got you we got your number we'll definitely get a whole different version of our children than the parents agreeded and we're on both sides of that because we've had conversations and you know we've had the shoe, the fun shoe issues and you know different new things and a lot of times they will, our kids will do things for their teachers that they won't do, won't do for us, and yeah, like what y'all can get out of her is amazing.
Speaker 3:Not mom. Mom cannot get a fraction of what y'all can get from her.
Speaker 2:Well, but mom's going to love her no matter what she does. That's right. I hope she knows that about us as well, but she definitely knows that about mom, yeah well, she raised me Right.
Speaker 1:Funny how that happens.
Speaker 2:So you've talked a little bit about the medical support and educational support.
Speaker 3:What about support out in the community? So nobody knew what tuberous sclerosis was and I didn't know anybody with autism or that wanted to let me know that they had it or that their child had it. I didn't know anything about autism besides what I saw on tv, which is more of the Asperger's or high functioning. They talk but they're just a little quirky or different. So that's all I knew about autism. That's not what I got. I got a different kind of autism. So it's like we all had to learn together my family. So it's like we all had to learn together my family, james's family. But we are lucky that we both have families that wanted to be in Daisy's world and wanted to learn how to function with her, what her boundaries are and that boundaries are important and that their feelings don't get hurt when I say we can't come last minute or I know we just got here two seconds ago, but we have to go and no, it's not that she doesn't like you.
Speaker 3:So I didn't have any local support. I had support through the internet. I found like mom groups and there's a TS Alliance. So that's how I really connected with her condition to learn about that and I knew because of her condition that it's the strong likelihood it's like somewhere between 70 and 80% that the child will have autism as well. So I knew it was coming. I don't think dad knew, but I knew it was coming and I knew around before she was even two and so she was diagnosed at three. Oh no, maybe a little bit before three because of her condition. But we do have a special needs community in town, but it's geared more towards after school and when they're adults, but there was nothing for young kids or before school or during school. No community like that.
Speaker 2:So what have you done to help bridge that gap?
Speaker 3:So I created a Facebook group for caregivers, for local caregivers, for children on the spectrum, because I had so many moms and people private message me. Are there any groups locally? Are there anything here in town? My child was just diagnosed, or I think my child does have, but they're not comfortable with being public about it or they don't know where to go to. So I created this group, hoping that they don't have to feel alone and that they can feel seen and validated and know that it's not just them going through this.
Speaker 1:I know it makes a huge difference in anything that you're going through in life that's difficult to have an understanding that there are people that at the very least can understand what it is that you're sharing. They may not have to or they may not be able to understand every aspect of it, but if there's something that you can connect with or somebody can connect with you that allows to kind of lift that that burden just a little bit, it makes all the difference in the world.
Speaker 3:yes, it does and I don't know why nobody is talking about the no sleep thing with children with autism, how they just don't sleep and it's, it's real.
Speaker 1:Yeah, so xander used to. He would. He would stay up until like 2 o'clock in the morning and he'd wake back up at 5 when he was younger.
Speaker 3:Very, very, very little rest.
Speaker 2:Well, he would go to bed, but we would hear him in there. We were fortunate that when he went to his room to go to bed he did stay in there, but we would hear him in there giggling and laughing and humming and talking to himself, and but then, even on the weekend, that if he wanted to stay up, he would still wake up at the same time that he got up for school. Now, now that he's a teenager, oh, yeah, that's not an issue anymore. So 10, 11 o'clock.
Speaker 3:Once again it does get better. Fingers crossed, and she is doing so much better. This year of life is the first year where I could leave her in her room and walk away. The very first year, so she'll be nine on the 15th. The very first year, so she'll be nine on the 15th. So eight plus years is how many years I have been right by her. So of course it's going to be difficult putting those boundaries down, but this year, after some advice from you, and, by the way, that you was directed to Laura because I don't do that well.
Speaker 3:As Daisy likes to call her, Curtis.
Speaker 2:Curtis With her voice, with that gruff voice.
Speaker 3:She likes to do her voices. So, outside help, outside advice, I would have never even have tried, because I would have just thought this is how it has to be. I have to be right by her. She obviously needs me. I can't just leave. If I leave her alone, something bad can happen. No, that's how she raised me. That's how she manipulated me.
Speaker 3:We can be apart and now that she'll get up in the middle of the night and sometimes she'll just go grab her tablet and not wake anybody up and what a blessing. Right, yeah, year eight has been much better than year seven or six or five.
Speaker 2:Those were particularly really rough years, you've already shared some things. Is there one thing that if you want somebody to walk away whenever it is I'm going to say this evening, but they might not be listening this evening but one thing that you would want them to walk away with?
Speaker 3:I would say don't be afraid or ashamed to share you and your child's story and to ask for help or say, hey, is anybody else's kid doing this or is anybody else having trouble here? Because you are going to find so many more people going through the same thing that you know, and then you could get advice that changes your lifestyle. That really, really helps is just don't be afraid, don't be ashamed.
Speaker 2:There is no reason to be ashamed. And so if you had one hope or wish for the community that you have started, what would you like to see it blossom into? Like perfect scenario.
Speaker 3:I would love for people to engage more and be more active and it would be great if we could start planning something with the kids and because we all know we can plan something and it's not going to go that way and that's okay and that's expected from our children, and we can get our kids together and you're going to have to keep running after yours and this one's going to probably be hitting himself or hitting something else. There's going to be lots of distractions and not in quotation marks typical behavior, and that is a safe place because nobody will be typical here absolutely, you got, you got, mr curtis thinking over here, mr curtis.
Speaker 1:I'm calling mr curtis jared. Yeah, that's okay. You can call me whatever you want, curtie, but no, I was just thinking about the. Uh, just that. We've been talking about the impact of being able to be real with people being able to walk through life. The worst things that we carry with us are the ones that we try to hide or the things that we try to push to the back.
Speaker 1:And again like you were talking about earlier. Um, early on it is easy to to hide, it is easy to kind of just disconnect from everybody and deal with your own little issue. But one of the things that comes with that is this, this uh, horrible feeling of of being alone and having no idea what to do. So, if we can go ahead and drop the walls because I know something else that we run into an awful lot is that parents almost feel like they have to be the authority on all things that their child is dealing with. Right, like, okay, so we have a son with autism, so we have to know how to answer every question about autism. We have to know all the answers. When somebody asks me about it, I have to be the authority. I have to know what I'm talking about. And the truth is this we're still learning every day. I mean, we're raising a boy with autism.
Speaker 1:We've even taken courses on it it right, we're still trying to figure it out, um, but if because we're all still learning absolutely and when we, when we stop learning is when things go bad. So what is your? I think you probably already said this, but I forgot. So what is the name of this group that you have on Facebook?
Speaker 3:I should have wrote that down, so I made sure that I said it right.
Speaker 1:Well, I'm sure that Laura will find it if she needs to.
Speaker 3:I'm pretty sure it's caregivers raising children on the spectrum.
Speaker 2:Ding ding, ding, you got it. The spectrum Ding ding, ding, you got it. I try to make it super clear.
Speaker 1:So what's your point? Very cool. So we'll definitely we'll push that and we'll throw it on our Facebook and whatnot, because, again, it's all about the team, it's about people working together, and when we work together and we support each other, that's when the best things happen. And it really does take a village, it really does take a tribe, for our children to become everything that they possibly can be and to progress to the point that they are living their best lives. And at the end of the day, I think that's what we all really want is we want to be able to see our children function in life the best that they can and get all that they can out of it, absolutely.
Speaker 3:And it's a messy life. This is not a cookie-cutter, picture-perfect portrait here. Life is messy and it's nice to be messy with others.
Speaker 2:Absolutely, it's always more fun right, yes, yes, and then you don't feel Like you said, real.
Speaker 3:It's real Because you keep isolated for so long. That's gonna come with depression and that's gonna come with a lot of other things. And if you're depressed, how can you help your child Because of how you feel? And then that spirals into. Then you have guilt about your feelings and it's okay to feel that way because it is hard and you don't know what to do because nobody knows what to do when you have a child on the spectrum.
Speaker 1:We didn't get an owner's manual. I'm guessing you probably didn't either.
Speaker 3:Why keep asking for one?
Speaker 2:Well, and like you said, it's a spectrum too, so what works for one child doesn't work for another child, exactly work for another child. But you know, and just to say I'm so I was so glad to see you make that group and to step out of, because I know you were looking for something yourself.
Speaker 3:I was looking for one too. I was one of the people who were like, messaging me. I was messaging others. I'm like is there a group for moms with young kids on the spectrum to where we could just vent, maybe, or get advice or anything? And when about the fourth or fifth person had asked me, I said enough is enough, I'll just make it myself.
Speaker 2:Yep, there you go. Sometimes that's what we got to do. Okay, nevermind, I'm just going to, I'll do it myself.
Speaker 3:And I hope it gets more engagement. It is a safe place. Nobody is here to judge.
Speaker 2:Absolutely.
Speaker 1:Very good. Yeah, that sounds excellent step in moving out and meeting people and forging these relationships. What's been really cool for us is we've found a whole slew of people that love Xander that if we were trying to just, you know, keep them all held up in this, he wouldn't be able to experience that.
Speaker 1:They wouldn't get to know him and he wouldn't be able to experience that they wouldn't get to know him and he wouldn't be able to know them, and so it's been great to see the impact on his development because of the interactions that he gets to have with people outside of his own family. So do everybody a favor.
Speaker 3:Get your kids out there because, how is the world supposed to learn if we keep them isolated?
Speaker 2:Absolutely.
Speaker 1:So, with that said, I think we're going to wrap this thing up. We hit our 30 minutes and see, it wasn't so bad, was it no?
Speaker 3:I think it was all right.
Speaker 1:But thank you again, lindsay, for hanging out with us, for answering some questions and being willing to talk to us about your super awesome daughter. And, by the way, I think you're aware of this, but I just want to make sure you know, if nothing else ever pans out, this girl can be a death metal singer. She has a beautiful voice when she's singing but, boy, when she turns it on, it's like it's earth shaking.
Speaker 2:Yes, Found that out during Christmas carols in her kindergarten year. I was like oh, okay.
Speaker 1:She's got it.
Speaker 2:She's a rock star. Oh yes, Absolutely.
Speaker 1:All right, so we're going to sign off. Thank you again for hanging out with us, lindsay, and thank you for people other than my mom that listen to this, because I've been yelled at a couple times for saying that she's the only one that listens. We're going to wrap this up and we'll see you guys next week.