Advocating for Access: A Conversation with Robbi Cooper, a Leader in Dyslexia Policy | Dont Call On Me, The Dyslexia Podcast Ep 21

[00:00:00] I would really encourage parents to have the confidence immediately and not get angry about it, but the school is there to help kids get through it. They're not designed, unfortunately, to individualize for each kid's need. And that needs to change. You should direct your anger and attention at the system.

[00:00:28] So if you're not getting what you need at your campus, you need to skip that campus and go right to your school board. And if they're not going to help, you might simultaneously want to go to your state agency. This is Megan, owner of Dyslexia On Demand. And I'm Erin, owner of Advocate to Educate. And we are the Don't Call On Me Podcast.

[00:00:51] We are here to talk about dyslexia, to remove the stigma, to hear what families really go through, and to share their stories. In both of our businesses and personal experiences on a daily basis, we listen to people telling their stories. Many have heartbreak, many have struggle, but most all have a silver lining, even eventually.

[00:01:15] It's all about the stories. The more we share, the more we realize we aren't alone and we are a community. No, a tribe standing together. Today's episode is sponsored by Advocate to Educate. We help parents navigate through the confusing maze of special education in public schools in California.

[00:01:39] We support families starting as early as preschool through 12th grade, creating individual education plans to support the specific needs of your unique and amazing child. To learn more, go to our website, advocate2educate.com. Today's episode is sponsored by Dyslexia On Demand.

[00:02:00] Dyslexia On Demand uses only the highest trained dyslexia therapists, and it's all one-on-one and individualized to your child's needs. The best part is that it doesn't matter where you're located because it's all virtual. Visit us at dyslexiaondemand.com to learn more. Welcome back listeners to the Don't Call On Me Podcast.

[00:02:25] Today's guest is someone that I have admired for years, and she is a true powerhouse. When her son was diagnosed with dyslexia, she didn't just advocate for him. She became a trailblazer. She drove legislative change and did that on both the state and national levels. So she is very courageous and determined, and we're very honored to have her here today.

[00:02:52] So, Robbie Cooper, I am going to let you go ahead and please introduce yourself and tell us a little bit more about you. Yeah. Hi. So my name is Robbie Cooper, and I'm a mom. I've raised two children, and they're both in college right now. One's just about to graduate, and the other one's a little, you know, going through.

[00:03:13] You know, I don't really have any special background that would relate to what I do in the dyslexia journey, other than I'm dyslexic myself. My husband is dyslexic, so that's an important thing that we both come from an understanding, which gives me the grace and time to pursue these, what I call injustices, because it, you know, then it started happening to my child.

[00:03:42] So, Robbie, you have so much that has led you down the path that you've gone through. You mentioned that you are basically a family of individuals impacted with dyslexia. But what specifically started the journey for you in terms of getting you to where you were, you are, excuse me, today?

[00:04:04] When I was probably 12, 13, I remember my mom in another room of the house was talking to someone that probably had given me an evaluation. They were trying to figure out why I was faltering in school, you know, she's a brat kid, blah, blah, blah, all this stuff. And basically, I just overheard, you know, well, maybe she can be an artist or maybe she can, you know, like, searing me away from the college path, basically, kind of.

[00:04:33] That tone, like she's just, there's something that's, you're not, you know, uncontrollable in her makeup. And I remember that I've never forgotten. So, we did get a little emotionalist mother. So, I mean, that's what drives me. And then link that to when I, you know, went through life and, you know, had a great lifespan and all this stuff. And then I had got married and I had my first child. And then he was amazing and just fun. And, like, I had a great puppy with my life.

[00:05:03] And then all of a sudden, you know, he hit school and that whole tone came back from kindergarten. And I just, I mean, it really sparked something. And I thought, I am not going to let what happened to myself and my husband, because then, you know, we kind of talked about his horrible experiences in school. No more. I'm going to stop. This is going to stop.

[00:05:24] And I'm going to figure out how to, with my time to make changes so that he doesn't have to hear that and experience what I experienced or what my husband experienced. No more. Can I, can we go back a little bit? And it's not because I want to make you emotional, but because I, because of my own dyslexia, I resonate with everything you're saying. And would like to go back to, you know, what field you should go in.

[00:05:54] What was school like for you? What was your experience? Like, do you, do you remember elementary school? Do you remember just the overall feeling of what it felt like to show up every day in a classroom that most likely wasn't designed for, for our type of brains? Because I went through, I remember, you know, middle school and high school, I was always very creative and I had a lot of good thought processes.

[00:06:22] And so I'd get A's on my English paper, but I'd fail all the spelling. So I'd always get a C. And then it's kind of felt ripped off. What? Wait a minute. Like I have, and they're like, well, you could just look it up. This is before computers. Like we didn't have computers. I'm, I'm a Gen X the first year. Like, you know, I'm like not, I'm not of the computer. We had computers when I started to work.

[00:06:44] So it was, you know, I just remember always kind of going through, going, I know I'm not going to get better than a C because I can't. They won't, they wouldn't give me that like, okay, we get, but you can't spell. And why don't you use a dictionary? Well, literally I would have to look up every single word on that page because I had no idea what was spelled right and what wasn't. I just felt like school was, it just didn't get me.

[00:07:13] And I, I did, I was better than that. I was much better than that. And I could never get it because the testing would, and the grading and all that was, it was so dependent on the technical stuff. And I, I, you know, I just couldn't do it. I mean, I'm sorry. I, I knew I had strengths, but they didn't matter. So it was kind of like, I knew that at the end of the day, my strengths didn't really matter.

[00:07:40] I mean, they mattered to me because I enjoyed tennis and I was good at, you know, I was a really good athlete. And I was, I was, art was always easy for, and pleasurable. I mean, like I, but that was not school because there's no acknowledgement, at least in my era of going to school, that there were, you know, kids that had these learning challenges that were really disabilities. And they, they didn't really address them.

[00:08:09] But I, so that's why I said, you know, not for my kids. I can't go through this again. Like I, I didn't want my kids to experience it. More did I want to have to relive it again. More do I think any family should have to live in the world that I lived in. That was my childhood. That was my school. I ended up going to the Fashion Institute in LA, which I excelled at. It wasn't easy. It was hard work from that aspect. It was challenging.

[00:08:39] But it, for me, that was where I, you know, it was all on creative content and production of the assignment. And, you know, so I like was happy, you know, I felt good. And, you know, so then, then I look back at, you know, career halt, you know, there's not a lot done. I was a mom. And so five years into the marriage, it was just an abrupt halt of everything else I was doing. All I've ever done from that point on is death.

[00:09:07] I understand that feeling of your own trauma in your belly and seeing that path that your son is possibly going to be walking and wanting to avoid that. Wanting to avoid putting him on the school bus every single day to have to face that exact same experience.

[00:09:28] And then wanting to change that, that's definitely a very powerful motivator that you had that empathy to help, you know, spark it in you to start fighting that fight. So tell us a little bit about the experience with your son. Well, I mean, he was, gosh, I mean, what a fun kid at lockdown from the minute. Like he was, he's always on. He's 100% on. That's to his detriment.

[00:09:57] He's, he's got ADHD too, but he's, he's like a, he's not hyperactive, but his brain is always on. He can't relax. He can't, he's always thinking about that. So, and then when, you know, school started and it was just like oil and water for us. I mean, he had preschool and we did all that and we read to him and he did all the, you know, like probably more so because we knew like, oh, we got to get him reading and, you know, got to prepare him.

[00:10:25] And he had all the little, you know, educational toys and he had the preschools and he had all the, you know, third grade. They were, they had cults, they had, you know, at the campus, like they had people actually teaching intervention appropriately. Everything he got, he got because I had to advocate for it and the special education system at the time, I knew they weren't going to do much for my kid in kindergarten.

[00:10:53] Cause I could tell by the attitude and by the answers I was getting and I knew what happened to me. So I thought, I started looking into the law. So I started researching, okay, what are, what are the options? I looked into IDEA law. I started reading all that, you know, stuff and, and I thought, okay, this is our pathway. And I went, you know, we got our own diagnostic testing done. And one of the people that we eventually got connected with was Dr. Jack Butcher, who is from a university.

[00:11:23] A lot of people might know him, right? In the, in the world of education and especially reading development. He's like one of the top researchers. He was on the No Child Left Behind, like the National Reading Panel. Dr. Fletcher was my first strong source. He was well liked and respected in Houston for his position. Yeah. And connections help. Let's be real. Let's not, I mean, in this field too,

[00:11:52] I can also say that providers, we get so mama bear about other people in our community. I know who to reach out to when I have a case that's going to really mean something to another provider. So it is, I think, I think it's real. It is. It is. Yes. It's like being part of this unspoken community.

[00:12:16] That's like, I got your back because this is the underground fight and we will fight for, we'll help each other. Yeah. And here's the thing. Everybody knows somebody. It's just, you've got, you have to keep your mind and connect ideas open. Because you don't know what the connections are. And sometimes they're in where you would least expect it.

[00:12:39] I never felt crazy in my IEP meetings because the school would always make it sound like my information was like minimal or, you know, or, or we've got this other data over here. Or when you go into an IEP meeting and you're one of many at the table, I always double checked with Fletcher. I always double checked with somebody that I knew, knew more to make sure when I would go in, I was on the right page.

[00:13:08] I never assumed that what I thought was the case was until I double checked or triple checked my ideas. And that's really how I still do things. I email them and ask them and they might at first kind of give you general, you know, directionals. But as you evolve and as you become, they become more aware of what you're trying to work on, you know, they're, they're very helpful with information and support.

[00:13:37] As you talk about this, I'm thinking about whenever I get a new client call and, you know, we do like a free 20 minute consultation. And I'm telling you, it always turns into a free hour consultation, a free hour. Like, it's, it's crazy because I get so almost desperate to help because I know what their child's going through when, you know, especially when it's this experience.

[00:14:05] And I don't believe there's any reason to gatekeep this information of how to help them. I think sometimes, I'm sure you can understand when you're going from professional to parent. And I would say like, this is specific to parents who aren't dyslexic themselves without a, they have a dyslexic child, but they're not dyslexic.

[00:14:29] Sometimes it gets so emotional and overwhelming that it's too much and they need another person to come in and support them through that process. But also being said, as I talk to all of these people, I think about them. I think about them after if I don't hear from them. And I worry because I know that there's so much politics in the process.

[00:14:55] Even if you talk to a professional and you get the straight answer, you call Sally Shaywitz and you say, listen, what do I do? And she says, X, Y, and Z. Well, you know that when you go back to the school district and you say, okay, we need to do X, Y, and Z. They'll say, well, we don't really do Y here. So like, and then it becomes a school of your own. Oh yeah, exactly. They do. We want something better that guess what? I don't even know the name of it, but it's better.

[00:15:25] I mean, that literally happened with my own son. They were like, we can do RTI. And I said, great. What's the program? And they were like, I don't know. Can I get back to you? You can, but like, I'm so excited now. Like, no, you know. I just want to say one thing. And I think one of the big themes to pull out of all of this volleying of, you know, name dropping, and I don't mean name dropping in a negative way, but all of these amazing

[00:15:52] dyslexia professionals who have been referenced, including all of us here on the screen, that because of that, we got into this work because of passion. And that's what leads all of this. So no matter if we're talking about Shaywitz or we're talking about Dr. Fletcher or, you know, a million other people at the core of it, they are people who are led by passion and everyone really just wants to help.

[00:16:21] Everyone wants to jump in. And it's the same thing with Robbie Cooper, you know? And so I think that it's so something to, to not, you know, not shy away from and to do reach out to these individuals and lean on the community because we are a community. It's so sad that we are in 2024 and the child has to sit through the garbage for my son.

[00:16:49] And, you know, when that was offered and I found out more information, you know, my thought was, this is not a choice most people can make, but I thought to myself, I am not going to put my kid through something just to prove that it doesn't work because in 2024, we know what works. It is possible, but it feels impossible because without funds and support to fight for it and

[00:17:18] people don't, it's not even that it's that we go to the school entrusting them. So it doesn't feel like that to parents when they don't know what they don't know. And then it's like, you know, the kids are going to be the ones that have to go through and potentially get more traumatized by doing something that doesn't work. And that's where I think to me, that's where legislation came in. People understand the law and what they're required to do. They just don't want to do it.

[00:17:46] And they know legally that there's ways that they can delay it or push the kid away. And so that's really why I would encourage anybody to join up and help with legislative change, because even though they still may not follow the law, the more legal laws that we can put in place to put guardrails up, the more chance that we're going to squeeze out

[00:18:14] the bad players from being able to do harm to our kids. You know, I didn't care where it was, but I had a very, very, it took me a while to target it. You know, when I said it's important to research and get data and understand what you're asking and where it stems from, that's really important because you can be spinning your wheels at the state level when in actuality of the problem is something at the federal level or vice versa.

[00:18:44] I remember calling and some lady called me back from the Department of Ed and they were like, she was rude to me. And she's like, we don't let parents come in. And you, and I'm like, well, I'm just going to come down and I want to talk. Like, if you come in, we'll escort you out. Basically it was her message. This is years ago. And I was like, I had to pull over on the side of the road. I was in tears because I thought she was like, and then I mustered back kind of my gut back up.

[00:19:12] And I remember going in to the, to OSEP later, the Department of Education Office of Special Education going in with, you know, I had to go under NCLD National Center for Learning Disabilities because they were like a national nonprofit and they brought parents in to talk. And I just remember talking like with whoever was the head of OSEP at the time and just saying, you know, well, that's not happening in Texas.

[00:19:39] And they're like, oh, well, we have data that Texas is doing all these things. And I'm like, well, where are you getting that data from? And he's like, from the schools or from the state. And I'm like, what do you think they're going to tell you? They didn't believe our stories or they didn't want to acknowledge our stories when we first started advocacy work. And then Decoding Dyslexia Movement, which I just need to bring in because it's now made

[00:20:06] a national sort of organization out of individual parents. Where I wasn't allowed in, they now see us, like we go in and we have meetings with the Department of Ed when necessary and when we have the time and when it's relevant. Whereas when I first started, they were rude to me. Tell us what happened when you decided no more. What did you do? Well, they wanted to retain them, first of all.

[00:20:37] And that's, you know, like there's no doubt that retention is actually helpful. That's not going to happen. What are you going to do for my kid? Basically, it's the approach. We had some really good special educators along the way, but we didn't at the time have cults and the school didn't have a cult. And I actually really quickly, Robbie, I want to say what a cult, a cult or a cult, it's a certified academic language therapist. Because I'm sure you know this, like we have a national, international audience.

[00:21:05] Not everyone knows what that stands for. So anyways, there are, there's a whole bunch of groups that have focus. And my son actually ended up, when things didn't work out, we sent him to a private school for a year in Buffalo to learn to be the best he can be. And they had something like, it was Orton, the Orton part of the Gillingham, when the Orton Gillingham started, like founded the school that my son went to.

[00:21:35] So like, even within these elite private schools that focus on dyslexia and stuff, they even have differences on programming. Like, it's a complicated thing. But your question originally was like, what did we do in first and second was just, you know, we started putting our line in the sand and saying no.

[00:21:58] And then he ended up getting reading instruction from the dislike or not the special education team at the school at the time. And was it the best that he could have gotten? Probably not. But at the same time, it was small group. I vetted it through Dr. Fletcher to make sure that whatever the programming was, was adequate to address some of his needs.

[00:22:24] So I felt like the special education team really matters in their level of training and what they have available to them at each campus, because it varies from campus to campus, even in a district that you would think that all schools would have the same access to different. It's so complicated. So it's just so I mean, there's so yeah, I know there's so many nuances.

[00:22:47] I was just thinking like the same RTI response to intervention that was offered at our school is offered at another school in the district by a woman who if she was at our school, I would have asked no questions. I wouldn't be arguing. I'd say, yep. And it's the same service, but with a different provider. And the provider, that one happens to have 20 years of reading background.

[00:23:17] So yes, the different scenarios are almost impossible to like, kind of taught, like specify in each area because they're drastically different everywhere. And it's very important. And so credentialing, I think that the heart of the conversation right here is credentialing and training of the provider matters greatly. So you should know that. We actually legislated that in Texas that they have to tell you what the credentialing is of the provider.

[00:23:46] And then this session, we're going for money. So we're going for incentivizing schools. Schools, they'll get more money if they're using a highly trained provider doing the same service as someone that doesn't have the credentialing. They'll get substantially more money. So how they choose to staff their school, and usually they follow the money, they'll get a lot more if they pick somebody that has a lot of credentialing.

[00:24:14] And if they want to continue to provide services, because we can't stop schools from choosing who they're going to hire at this point in our process legislatively. We have to, you know, we can't control that. But what we can try to control is how they get compensated for how they staff their school for special instruction and stuff.

[00:24:38] And so to kind of remedy these areas a little, this session, we're going for funding. And very tied to credentialing. And we hope that, you know, pray and that we get that because I think that will shift to, that'll shift the dynamic of instead of giving people, you know, instruction from

[00:25:05] people that you might have picked somebody else and went with at a different campus because you know they have more, because it would incentive them, incentivize them financially to have the higher trained person or train their staff higher because then they could get the more. And so we were able to pass a really strong law in Texas last session that went for sort of the rules of the game are going to change here, people, you know, like we changed the rules of the game.

[00:25:34] It's hard to pass a law when there's funding attached. So we passed the law. And then now this session, it's like a one, two, we're going to go after funding. So we've already got our law, which is what's the right thing to do. And now, you know, we're separating the two, but we're fighting. It's hard for because we know we can't get the laws, not enough. And they and the money's there. And so we want to make sure that we can link those two together.

[00:26:01] So you've been at this, this legislative advocacy fight for quite a long time, right? I can respect the fact that, you know, the son that you are referring to is finishing college now. So from where you started your journey up to where he is now, and you are still very actively fighting the fight.

[00:26:25] One thing that I can probably connect together is that none of the work that you have done, you know, ever impacted Ben, that you are just fighting for the other kids. Is that why am I, you know, when we're looking at the state as a whole, is that true? I mean, probably 75% never helped him. We battled for him.

[00:26:52] But before I got massive change where a parent could walk in, like to the college ward and, you know, not have to fight and reprove they have a disability to get an accommodation, that was one of our long, probably seven or eight years of fighting. I knew that was coming. I knew. I mean, that was something I saw coming, like maybe fourth or fifth grade that, but hey, wait a minute. He's going to have to take these other tests. And I already know it's going to be a battle.

[00:27:22] So I started fighting. He got the accommodations he needed on the SAP in early high school, you know. But then later that year, the Department of Justice, who we finally got to take the case, settled with the college board. And so then they opened, they changed the law. They changed the expectations that the college board accommodations would kind of shift. Clearly, Robbie, you've done so much.

[00:27:51] Is it possible for you to kind of summarize maybe the top five things that you fought for and achieved for the state of Texas? Oh, well, I think the thing I'm most satisfied with, I would say, not proud, but satisfied, would be that parents can now have dialogues with, you know, leaders in our state that handle

[00:28:18] education and we're not seen as like these crazy parents. Now, maybe we are, but they put us at the table. So I'm very satisfied that there's a lot more parents at the table in big decisions. Something I took very personally was access to the technology for students with dyslexia, more mainstream and also on tests.

[00:28:42] I think that whole scenario of opening up the accommodations to all kids with disabilities, that was a personal victory. You know, I've kind of forgotten a little bit about it because it's not what I'm working on now. But, you know, that was a long haul issue. And then getting money from the department of, or from the federal level, we had a wonderful congressman, Lamar Smith, who was, he was this all for us.

[00:29:11] And he got us $25 million a year through the National Science Foundation dedicated for dyslexia. And that's how the National Center for Improving Literacy is funded. I'm very proud of the people in these positions of negotiating and power and decision making that were consulted and that were heard and that parents are being listened to.

[00:29:36] And I guess my hope for like going forward, just learning those ropes and kind of coming through and learning from other people that have been there. I've got so many people that I feel like I can step away and they've got it. They don't need me anymore. I think maybe that's the most thing I truly feel proud of, that there's a network of moms in the state that if I just wasn't going to be around or didn't, you know, want to do

[00:30:05] something else, that they got it. One thing I know, Robbie, is that you definitely have legacy. I think that you have done that for yourself. There's no question there. And it's something to be extremely proud of. To see this other side is really inspiring. It makes me want to go and say, where else can I, you know, get involved in? Absolutely.

[00:30:32] So I think it's important for parents and educators and advocates to all see that there's many different levels of advocacy in this field and it's needed desperately in all areas. So whatever speaks to you, right? Whatever your comfort level is, you just need to get involved and use the top players like we like circling back to the beginning, right? Using the players that you think, oh, like they're now too famous.

[00:31:02] They wouldn't, they're not going to care about my kid and realize that we're saying, okay, but you might think that, but you need to still reach out. You still need to try. You still need to talk to the people that have a reputation because it, a positive reputation in this field. It's really important that they're backing you because they do come vetted. And that is really important in this, in this field. Yeah.

[00:31:29] And this is just going to go to get to know your legislators. Our laws in Texas that we've just passed would not have happened without Steve Coe. He latched on from the beginning because the testimony of our kids, you know, brought him back to his traumatic childhood with dyslexia. You need to find your allies in the little different corners of where you're going to work because they are there.

[00:31:58] You just, they're not going to want to talk about it, but they're there. And so you've got to find them. And then you, and then they're going to be the ones that help make the change with you. So thank you so much, Robbie. You've definitely been a huge inspiration to, to us, to our listeners, to parents. And I'm just so tickled that you took the time today to speak to us.

[00:32:26] Thanks for joining us on the Don't Call On Me podcast. If our stories resonate with you, connect with us on social media and YouTube. Share your stories on don'tcallonme.com and help us enhance understanding and support. Your story has the power to inspire change. Together, let's strengthen our community one episode at a time. Until next episode, keep listening and keep sharing.