How Can We Support Special Needs Families?
Liz Reflects on Conversations About Advocacy
SEASON 1 | EPISODE 13
Recently on Being Different, Liz engaged in conversations about special needs education in Tennessee and across the country. Liz was joined by Will Edwards, Michael Collins and Mercedes Lawson to discuss how state and government funding impact education systems.
In this episode, Liz is joined by Anthony Palmer, producer of Being Different, to reflect on the role of advocacy in all special needs families and what we can do to support our community.
What’s up next? We want to hear from you! Email liz@lizdurham.com to let us know what you want to discuss on Being Different.
Special thanks to our guests for offering information and vulnerability when sharing their stories.
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Being Different with Liz Durham is a Palm Tree Pod Co. production
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Liz 0:06
All right. Hello, everyone, and welcome to another episode of being different. Today, Anthony is joining me again, my producer, he's amazing. And he's very helpful and doesn't let me stay here and ramble on and on myself. Thanks for being here, I
Anthony Palmer 0:20
can enjoy rambling with you.
Liz 0:23
Together, so it's not quite as boring. Anyways, we're wrapping up the segment about special needs that we did huge thank you to will Edwards, Michael Collins and Mercedes Lawson, I learned so much from those three. I feel like I'm just going to speak for myself, because I don't know how other people feel about this. But when there's like topics that are uncomfortable, or that you don't know much about, it's easier just to shy away from them and not talk about them. And so for me, the special needs thing is, of course, I'm interested in curious, but I'd never want to do offend people. So I was like kind of afraid to ask them questions about it. And what talking to those three has taught me is like, maybe not everybody feels this way. But they want people to know what's going on so that we can help things and change the system to make it better. And so I just learned so much from them. And now I feel way more comfortable with the topic. And I at least have a base understanding of what's going on in our school system and what happens after school and where our state particularly is really lacking in areas that need to be fixed. And so hopefully, if I have friends that have special needs kids or anything like that I can have a decently intelligent conversation with them and support them as best I can.
Anthony Palmer 1:43
It was it was a quite an insight into you know, everybody who you brought on, wears two hats in this conversation, right? They were all parents of kids with special needs. And they all are? Well, I mean, really almost three hats, they're all are advocates in some way. And then all of them within their professional setting also are working to help families affected by it. So it really was quite an interesting, like cross section of how all that lined up. It's funny, you said it on the will episode. I mean, this this, I was thinking back to July of last year, when you first sat down with will that episode that never got picked
Liz 2:27
out. Because I messed up.
Anthony Palmer 2:31
But you know, it's like, it's funny how things happen. I'm glad that I'm glad that that's the route that we went down with it because, you know, in your original intention for talking with him was talking about local max County School Board election that was going on that he was running for. And it really opened up the door to this, this segment that we just did
Liz 2:51
like his true passion. And what for me, was so much more important than what my original intent was. Yeah, so it's cool.
Anthony Palmer 2:58
Yeah. What did you think? Just as we kind of fall in with these recap episodes that we're doing for you what was one of the most, I don't want to say shocking, but like one of the most like, alarming things that you heard across these couple episodes.
Liz 3:20
Um, I guess I heard it from all three of them. But we'll pointed it out about how you know the state is who supports and takes care of these kids. And we know that when the state gets involved, everything's gonna be somehow jacked up. And so I'm not saying the state is not trying to do your job or anything like that. But when will said that there are dollars that are allocated for the special needs kids, and they don't get used, and then they just go into this whatever fund this general fund that was like, Oh my gosh, like that money is there for these kids. And these kids need it. And it's not being used because of these political or whatever you want to call it reasons. That was pretty alarming to me
Anthony Palmer 4:05
that piggybacking on that, if you kind of took that part of that conversation from will and combine it with what Mercedes was talking about, and just who decides what part of the budget gets not only allocated, but then spent, right? Because it's amazing how all of a sudden, and this is not this is not special just to this conversation, right? This happens with allocations of funds everywhere, right? But when you when you see a population that definitely is in need and it feels like could benefit from those funds truly being accessible. Now, I am not on the school board. I am not on city council. I don't I'm not sitting here like, right I'm not a school administrator. Like I understand that everybody's got their own perspective with it, but like that really was interesting hearing basically, you correct me if I'm wrong, but basically Mercedes saying like, Oh, now all of a sudden this money's just going to us getting a new gym. Exactly. You know? Correct. Pretty interesting.
Liz 5:02
Yeah. And I think it's, I don't understand why teachers don't have more input, because the teachers are the ones on the ground level with these kids and the parents. And so Mercedes said that some principals and districts that she would work with would allow the teachers to have a little bit of input, but a lot of them wouldn't. And to me, that was kind of sad, because I'm like, the teachers know what they need the most. So I just think about times in my life and jobs that I've had, like, I know what my client needs, if I have to go to my boss, and then my boss has to go to another boss, and then another boss, it's like, there's so much red tape and bullshit that, like, the kids are the ones that are suffering in this process, you know,
Anthony Palmer 5:40
and I do know, like, that's a really good point. And I think a lot of this, so much information can be found through like talking to people within your community who have been on similar paths or have experienced with it.
Liz 5:52
What was also interesting to me is, you know, Mercedes was talking about how things change a lot when you walk in the room with an advocate. And for me, I was just thinking about my husband, being an attorney, you know, like, if you walk in with an attorney, people will immediately take you more seriously. Now, they also might get a little bit more defensive, too. So there's a, you know, a con side to that as well, or it could be, but in my mind, I was just like, oh, I, if I had a special needs kid, that's the first thing I would do is go get an advocate, because I don't know what those rights are. And the laws are of parents that parents have. And so I would, I would want somebody that's an expert not to advocate just because, you know, her point was, you know, the teachers don't know, the laws there, their job is to teach kids it's not. Right, you know, and even the administrators don't know the laws. And so so many things just get missed by people not even knowing this. And so I think that the services that she's adding are awesome. And it was also kind of sad to me, she said, a lot of times advocates are expensive, because of the knowledge that they're providing, which sold an attorney very expensive, you know, so I think a lot of people probably don't have access to them, which is kind of sad, as well. And she said, the State offers them, but it's the state. So clearly, the state's trying to cover their butt more than anything. So in my mind, a private advocate would be better than a state provided advocate. But um, the whole thing was just very interesting to me. And then, you know, I didn't even realize that like, if your kid has issues prior to entering the school system, which at you know, their age ranges three to 21, the state actually provides money and resources, but you have to like, go and talk to your pediatrician about it, and all of that, and I just didn't even know that. And I have friends that I'm positive didn't know that, you know, they have concerns about speech issues, or whatever with their children. And that was interesting to me. So I feel like there's just a lot of stuff people don't even know that's out there. That could be incredibly helpful. Just if you know about it well
Anthony Palmer 7:54
and even take someone like Mercedes who does this for a living, she was talking about that. It Katie Beckett, Katie Beckett, yeah, thank waiver. And she was like, that was something that she discovered exactly. You know, this is somebody who lives and breathes and is in this space, you know, so it's the, the, the unfortunate thing about special needs mental health things along those lines in this country, is, we know that there are resources there, but it just feels so damn challenging. Yeah, to navigate and define them. Yeah, within that, and it's, it's how fortunate we are, I mean, just in this small pocket that you discovered, I mean, these are three people that are doing a lot of work to help people along those lines, you know, and to create the voice and, and the path for people to be able to do but I mean, it really, it's a huge challenge. Yeah.
Liz 8:55
And you just, I'm sure you're overwhelmed and scared and like feeling all those things. So then to think like, oh, my gosh, there's this huge, daunting world of things I knew nothing about. But I want to help my kid and I love my kid. Michael said that one of the best things he did was he actually started a support group in severe trouble. And he was like, the people that came to that group taught me more than I ever knew about anything because they were like further along in their processes. But I think that the support group thing is incredible, because people can share the knowledge and be like, hey, there's hope. Here's the resources that I've found that have worked for us. And I think it's cool that people are helping each other in that way. Oh, for
Anthony Palmer 9:34
sure. It's interesting how you Oh, it seems that people who are the people who end up being advocates and working for stuff always seem to have that personal connection? Yeah, to it. Right. You know, and it would be I could see where it would be so easy to feel so overwhelming, like you were saying or like just daunting to kind of get through your own journey. But to kind of be able to step up to the plate and take the journey that you're on and use it to really be able to help other Yes, pretty cool.
Liz 10:03
That was one thing, one of the sweetest things and all the interviews was that with each one of them, you know, Michael said, the reason why I am who I am is because of my son. And his son is like, not a detriment to him in any way. Like he's working at Sur toma because of his son and all of that. And I was like, that's so cool. And then Mercedes said that she got into this because her little sister had special. So it was like her whole family's like life, basically. And then she said, she went to school to do something else, because she wanted like, be away from it. And now she's back. And it's like her whole life. And then look at what Will's doing. Like, all three of them, because of what they're doing is because of their children, and they are bright, like so smart. And they're making a huge difference in this community. And I was like, that's really cool that they've taken something that most people would be like, this is a horrible thing that's happened to me in life, and they've turned it into something good and something positive. And they're helping so many other people with it. So yeah, that can be applied to a lot of things in life. Oh, for sure. And you have a common theme. That's even
Anthony Palmer 11:04
when Mercedes when you said this in the episode, but like that, but it's her and her mom working together on so much of this stuff, like that's just really it is there's a lot of power in that. Yeah. Very cool.
Liz 11:14
One other thing that I want to say. Michael talked about how the estate planning process is really important. And I didn't realize this, but like, you won't get funding from the state, if you have more than $2,000. That's like no money. So it's like they want these. I don't want to say this. I don't know how to say it. Politically Correct. But I'm not politically correct. So whatever. It's like they want these people to almost be like, destitute, yeah. Um, in order to help them which in my mind is, like, terrible. So I do think that it's important, if families have these kids to get that trust set up so that they can leave them something or if the kids are actually like, making money doing, you know, being productive and stuff that they can have something to their name. I didn't know any of that. Did you
Anthony Palmer 12:05
know I didn't. And I think that's part of the, again, like there's a cannot begin to fathom as a parent, like, you know, being a parent, for anyone, any stripes, any whatever is a challenge, right? Yes. And all that comes with that is incredibly challenging at times the planning that whatever, but it feels like you have to find another gear. And you have to think so much farther ahead. Right. And like, that was a huge thing that I feel like I heard from Michael's conversation with you, right was like just that conversation. Because was isn't his wife,
Liz 12:44
his wife is an estate planning attorney. Yeah.
Anthony Palmer 12:46
So he was kind of talking, I think it was before we even got recording, and the three of us were just kind of talking about some of that. And I, I cannot begin to think through some of that you were sharing too about like your cousin and your aunt and uncle having to have some of those thoughts and conversations on this. Yeah, it's
Liz 13:04
just I didn't, I think if you have a kid that special needs, and clearly it depends on the degree and everything like that you have to, you know, my parents, my dad has always said My goal was to raise you to be, you know, adults that go into society and pay your taxes, do some good in the world. But I think in his mind is once I turned 18, I wash my hands up, like I've done my job here. But if you have somebody who's special needs, it might not be the case that you can just go and wash your hands of them at 18. You know, and so if it's something that's more severe, then you have to do a lot of long term planning. And that can be, I would say, very daunting if you don't have somebody who's guiding you that kind of knows. Oh, for sure.
Anthony Palmer 13:46
Yeah, and it was, I think one thing that was really cool about how we kind of stacked these is really looking at that, like, it felt like with wills episode, we kind of got more of this, like, K through 12 conversation mentality, right. And then with Michael, it was kinda like, what comes next until you see you know, so yeah, I mean, really, really powerful couple episodes, and I think very eye opening on a lot of the ins and outs of of navigating this world for people who don't have to do it. And definitely, you know, are around it and see it, but I mean, it's, it's
Liz 14:24
eye opening. Yeah. And for me, it's given me more empathy, not in the way of like, Oh, I feel so sorry for them. But if I have somebody in my life that I know that has a child with special needs, I'm just like, I shouldn't be bitching about whining about setting up swim lessons and this and that, because they have to do all that but then also therapy and all these other things. And so it just adds another layer of complication. And for me, I'm gonna be like, Okay, if they're being snappy today, they might be a little stressed out and yeah, so So I need to be like empathetic. So you know,
Anthony Palmer 15:01
what one thing that I thought was really applicable across kind of all fronts. And I know, Mercedes talked about this, and I think this may have come into play in some of the other conversations as well. But really just that concept is like a parent of trusting yourself to be your your kids advocate. Yeah. Right. And she was talking about when they changed OTS because not that the OT they were using was bad, but it just wasn't in line with where they are. And like, I think that's something that I knew, like, myself as a parent. I've had to really, like, lean into that into like, trusting my gut on stuff, you know, and it's what's funny now, I've found at least is like, I have moments where I'm like, yeah, no, no, this is what this looks like on paper. But this is what my guts telling me and like, I'm just good with that. I'm just gonna roll with this, you know, and that that takes time to get there. But that's a pretty, that's a pretty powerful thing as a, as a parent, as a caregiver on any level. Yeah, to really just be able to, like, trust yourself. Yeah. And be and be your persons advocate yourself, you know?
Liz 16:07
Yeah. Because we know our kids better than any doctor or anyone else. Does. We live with them. We are them. We're with them all day long, you know. And then I feel like there's so much information in this world that we're constantly second guessing. Like, did I do the right thing? Did I not do the right thing? And sometimes when you trust your gut, you don't even see the immediate impacts? Yes. Sometimes you have to wait years. And you're like, Did I screw that up? Yeah, screw that up. But um, yeah, that's a really good point. And for all parents in general, is just, you know, advocate for your child.
Anthony Palmer 16:39
Yeah. Yeah, for sure. Well, cool. Well, so as we kind of have wrapped this session, and we're moving into our next topic here, what's, what's on? What's on the docket for next couple episodes
Liz 16:51
coming? Next is health. And I though that is very broad women's women's health and kind of family health wrapped in Yeah, sure. But I am not the picture of him by any means. I try my best, but it is very interesting to me. So we're going to talk first to Kelly Cove about nutrition. But then also, since I'm pregnant, I want to talk kind of about pregnancy experiences and just different outlooks, like, you know, when I had Mac my first I definitely had a, this is how it's supposed to be done. And this is the way it's gonna go. And now I'm just like, whatever, you know, it can be totally different for everybody. You know, I don't even care what doctor I get, as long as I feel like it's somebody that's competent, you know. And I even want to talk to like a midwife and somebody who's done a home birth and stuff like that to sesh, or just some different areas of health that are interesting to me, just to kind of bring some different perspectives, some of it, there's still no way in hell, I would do it personally. But it works great for some families. And so I think it's just interesting to hear those different options that are out there.
Anthony Palmer 17:56
Yeah. Well, I think this will be a cool, a cool little next section for us. And I'm excited that we're for you. Because I think we've got we've got a couple episodes recorded. We've got a couple on the docket. And we're just kind of taking the opportunity to really play around this one a bit. So as per usual, like if folks have thoughts on things I'd like to hear kind of within this women's health or family health arena, like give us a shout let us know. We'd love to we're still working on interviews for this segment. So be happy to add more stuff to it.
Liz 18:29
Absolutely. And we want to know your feedback if you like it don't like it if you hate it, let me know. Hopefully they don't hate it. They might
Anthony Palmer 18:39
well cool well Liz Thanks for Thanks for letting me jump on and do this with you and wrap up the wrap of this this past couple episodes. Anything else is we can close it out.
Liz 18:47
That's all I got for today. So we will see you guys next time. You can check me out on Liz durham.com or Instagram at Liz Durham, TN we'll see you guys next time so yeah,
Speaker 3 18:58
I being different with Liz Durham is a palm tree pod CO production it's produced and edited by Anthony Palmer. Thanks to Emily miles for digital support. The content for this episode is created by me Liz Durham.
Transcribed by https://otter.ai