Ensuring Support For ALL Kids Identified With Dyslexia ft. Amy Dobronyi of COKID

We didn't have the funds to ensure that they had outside tutoring, so we were completely dependent on the school, which really was, we had enough for one child to receive tutoring outside of the school, but we didn't have enough money for two. And really, which child do you choose gets to learn to read?

Hey everyone, we're Nick and Sonja, and this is Dyslexia Journey, where we help you support the dyslexic kid in your life. And today, we are so happy to welcome Amy DeBroni, and I'm going to tell you a little bit more about her. So Amy DeBroni is a co-founder and co-chair of CO-KID, which is Colorado Kids Identified with Dyslexia, a grassroots parent group whose mission is to improve the lives of individuals with dyslexia through advocacy, education, legislation. She also helps run the Dyslexia Resource Group and DC KID, which is Douglas County Kids Identified with Dyslexia.

She's currently weeks away from receiving her Master of Arts in Education from the Reading Science Program at Mount St. Joseph and a dyslexia certificate. In addition to dyslexia advocacy, Amy has a passion for literacy in underserved communities and for the civil rights of those who have disabilities. She has training from the William and Mary Law Schools Institute in Special Education Advocacy, and serves on the Colorado Special Education Advisory Committee. As a family member of persons with dyslexia, Amy is committed to increasing knowledge, compassion, and understanding of those who have invisible disabilities and is committed to helping them achieve their potential.

Welcome, Amy. Thank you for having me. So, Amy, thank you. Thank you for being here today. Anyway, to start with, could you talk a little bit about your background, about how you became interested in dyslexia and dyslexia advocacy? I'd be happy to. So, for us, our journey began when my daughter was actually in kindergarten. And about two weeks into her kindergarten year, she came home and told us that she was stupid, which was pretty shocking because this was clearly not a stupid child.

She was very bright, very precocious, kept us completely on our toes at all times. And she really knew early, early on that she did not learn the way that other kids were learning to read. And so we had this mixed message going on with the school where the school was saying, you know, I had some folks saying, I think she's gifted. I had some folks saying, I think she's developmentally delayed. And it just took this bright, happy, cheerful child that we had to a child that was, became very, I mean, even in kindergarten, first grade, very depressed, very anxious, and really just lost that spark and that joy that she had had so much younger.

So, it really culminated for us around first grade when that parent voice inside that knows that something's wrong and keeps doggedly trying to find out what is going on and why their bright, happy child is so miserable. That led me to talk to a family friend who said, you know, I think I want you to go get an evaluation. Here's a name. And we did. And when we got that evaluation back, it was without a shadow of a doubt, she has dyslexia.

And my husband, who's this incredibly bright guy who also struggled to spell, actually is where I really noticed that with him, was just tears streaming down his face. Like, this was old movies for him. And he really, I think, resonated on some level with what that struggle was, but hadn't really come to terms with that until that moment. So, that journey really helped us to realize that not only our daughter did, but my husband did, and my son as well.

So, my daughter is a rising junior, actually, in engineering school. She was very profound in her dyslexia. And my husband also was diagnosed, and when I met him, he really struggled to pass English 101 and 102 in college and had tried many times. And through accommodations, eventually got that diagnosis, got those accommodations, was able to take the GRE and go to get his master's, and just recently actually got his doctorate. So, he's really a testament to when we appropriately identify, provide accommodations, what people can accomplish.

And then my son is actually going to be a senior in high school this year. So, this journey has been going on for a long time for us. And throughout it, it just came to that very strong realization of the haves and the have-nots. You know, our family, when the kids were young, we didn't have the funds to ensure that they had outside tutoring. So, we were completely dependent on the school, which really was, we had enough for one child to receive tutoring outside of the school, but we didn't have enough money for two.

And really, which child do you choose gets to learn to read? And we were pretty just a middle-class family. So, I think that that's really where a lot of my passion comes from is, you know, we're pretty well-educated, pretty knowledgeable. And yet, it was a real struggle, which left us with kids that were illiterate, and that's not okay. And so, that's why I do what I do, is that I want to ensure that children are learning to read.

It is truly a civil right, and it's very much about self-determination, the ability to even order off a menu yourself, or sign a lease, or participate in our politics and our democracy, and really determine who they are in their adulthood. And that's, I think that's the best way to summarize it. Probably a little long-winded, but, the summary. I think that's really helpful to hear. I mean, it's just always helpful to hear people's actual experiences.

And, you know, both in the case of your husband, like you said, is a testament to what can happen, but also the struggle part. Yeah, you know, there's so much bias around that belief that because you have dyslexia, you're unintelligent, you know, all three of mine are, you know, really, really bright, if not, you know, I mean, gifted, I mean, no, but it's a spectrum, and helping them achieve their potential is so important.

Yeah, I'm really glad that you emphasized that point, because I think if there's one point that we try to emphasize on Dyslexia Journey, it's that, that, you know, dyslexia does not equal stupidity. It's a learning difference, it's a difference in the brain, and it's not correlated necessarily with intelligence. No, definitely is not. Yeah. I had a question, when you're talking about sort of the experiences of, you know, your children not getting the appropriate support to learn to read in school, and then with, I guess, oh, you know, with not necessarily being able to afford private tutors and private education for them, how did you, I guess, sort of get what you needed from the schools in order to help them succeed in school?

Well, in truth, it really took my husband graduating from his master's program and getting in a position that we could actually pursue private intervention in private schools. So my answer is not what I wish it was for everybody. And that's why I do what I do, because it needs to be the answer for everybody. It's, you know, it's not unreasonable to ask our schools to teach our children to read. Yeah, I mean, we can relate to that as well.

We were, I guess, privileged to be able to send our daughter to private school for several years as well, which really, really helped her, and we realized that that's not an option for a lot of people, and, you know, that we need to be doing better as a society. It is absolutely a case of privilege, and I am very aware of that. It's also a case of privilege that there's the assumption that we are reading to our children, or that we're, you know, that the parents, or poverty isn't the root cause of the reading difficulty, which I don't accept as an excuse not to teach children to read.

Yeah, that's a really good point. Yeah. This, I think, leads us right into Co-Kid. So can you tell us a little more about how it started and what its mission is? Sure. So Co-Kid is a group of parents that all were individually working in our districts to try to improve literacy for kids with dyslexia in our districts, and we came together and kind of looked at each other and said, hey, we need to be doing this work, not only at the district level, but at the state level, advocating, you know, speaking truth to power, kind of giving that voice to that struggle that's pretty universal.

Like, I rarely ever talk to a parent who hasn't had a very similar journey. So how did we, how do we speak that truth? So we came together, the first kind of, first group of us came together in 2017. I more came along in 2018, and we have been pretty tirelessly working. We're all volunteers. We all do this for very similar reasons, our own kids' journey. And so our mission is really, as you shared in our bio, which is really ensuring that individuals with dyslexia are appropriately identified and given opportunities to reach their potential.

But interestingly, as you come into this world, you start to realize that there's really a literacy issue that goes far beyond our kids with dyslexia, and our kids are really just kind of a canary in a coal mine to a larger issue. And so that passion has, for many of us, has encompassed all children who are not reading proficiently, as well as ensuring that kids and adults don't feel alone, because they tend to feel very alone and very much like they're the only ones, and they're really not.

There's a lot.

Yeah, that's interesting. And it seems to be a common theme among advocates we interviewed a few months ago, a dyslexia advocate in California named Sherry Ray. And she said kind of the same thing. She started in dyslexia advocacy, and now she calls herself a literacy advocate because she realized the problem is more widespread. Yes. I mean, I come into this through interest in actually business and finance and find myself, as you shared, a couple weeks away from obtaining my master's in essentially the science of reading from Mount St. Joseph, which has been an incredible experience, but because my passion became literacy.

Yeah. I'm curious, tell us a little more about maybe some specific projects or avenues that Co-Kid takes, just to understand how that advocacy works a little more. Sure. I probably can speak more. We all have our areas that we're super passionate about. And for me, my personal area as a passion are about raising parent knowledge. What I wish I knew then that I knew now, and how can we empower parents with that information?

And if we're raising the bar on parent knowledge, hopefully raising that bar for all children. If you've ever heard the metaphor of, you know, raising, if we're raising boats, you're putting water in and it raises everybody. That's really where I tend to think. So a couple of those projects have been when we created the parent caregiver literacy dialogue tool to help parents have a conversation at their school about literacy and what that looks like.

A recent one was last year. We, and I should say that literacy dialogue tool, Schools Cubed helped us create. And this last one that we did was with the Read Act, which is a state legislation that we have that when students are below a certain level, they're put on read plans. We created a tool to help parents ask questions about where their child's root challenges are in reading. So many times we see read plans that are at the, so when you understand reading, reading comprehension is kind of the output of all the underlying skills or fluency.

And so many read plans, IEPs are really about reading comprehension and fluency when there's an underlying skill deficit, that's the root cause of the child's difficulties. And if you don't remediate in those root cause areas, those other areas are, it's like trying to run forward with your foot nailed to the ground. You'll never move forward unless you remediate those root causes. So it's really about helping parents get to that. And it's been really fun to hear teachers are using these tools.

And so those are some of them. The other things is like working with our state board, advocating at the state board, letting them know what's happening in higher ed and in school districts. And really being that voice for children. You know, the teachers have union that helps bring their voices forward. The school executives have essentially a union, a professional organization that brings their voices forward. But there aren't people bringing children's voices forward.

And I think parents are very much in that role, in that space that it's necessary to bring their needs forward to those that are in power and are making decisions on our children's behalf.

Hopefully I answered that for you, but yeah, thank you. I think as a follow-up to that, I'm curious about how much of, and that all sounds really amazing work. How much of, of your work or CO kids work is sort of working with parents versus with the education system? Would you say it's sort of equally divided or?

I don't know that I can like divvy it. Like we're just, a lot of our work has been building our plane as we were flying. You know, there was such a desperate need that we've just tried to show up and be what the community needs. The pandemic, I noticed a lot of parents just kind of retrenched into really trying to ensure that their own families were okay. So out coming out of that pandemic period, we're just hearing from so many parents who are starting to suspect that their child might have a difficulty as they were watching them do remote school and so forth.

So I think all of us individually end up talking to a lot of parents and trying to connect them with resources and trying to answer questions about the journey and help them feel supported and know that they're not alone. So I would say, I'd almost say half, half, maybe even three quarters more for parents than, but it's, it's hard for me to really answer that. I don't know that we ever have granularly identified it.

We just show up and do what we feel we need to do. Yeah, that makes sense. And I really like how you emphasize that you're bringing out the children's voices too. Yeah. I, I heard a presenter, I just shared this interesting night on Twitter, but I went to a conference and one of the presenters said, and every decision we should be asking, is this about the needs of the adults in the building or the needs of the children?

And if we keep asking that question and refocusing our decision-making on the needs of the children, a lot of things just come into place and the attention is where it needs to be. So I feel like a lot of what we do is show up and go, is this about the needs of the adults or the needs of the children?

Yeah. So again, sort of trying to get my mind around all the different aspects of dyslexia advocacy, this may not be only co-kid this, this could be like really more generally. So there could be other organizations involved here, but I think I have a sense sort of the types of things involved. Are there different, like, for example, when you say like, I'm trying to think of who sort of are the interconnected pieces here.

Like when you talk about the schools, for example, is that like, is it individual schools or is it whole districts or is there a school, school boards ever involved? Or is it kind of just a case by case basis, depending on the issue? Well, it depends on if you're talking about co-kid itself, kind of as an umbrella statewide group, or if you're speaking more about the individual school districts, you know, Colorado is very much a local control district.

So the control is really at that local level. So if we're speaking as co-kid, it's a lot of supporting the parent work groups that are trying to advocate within their individual districts. So for example, in, in Douglas County, where I'm a co-leader is, you know, we go and give simulations and continuing education things. We talk to our school board, we meet monthly with our, our school district leaders and really talk about all of these issues and what we're hearing from parents and what we're hearing at the state and how we can support movement towards really that appropriate identification, appropriate support of children with the hopes that they don't get to that point where they think they're stupid.

Yeah. So, so it might be different in different states. It sounds like because it's a lot, a lot depends on how everything's structured. Yeah. Yeah. Okay. And there's, there's statewide organizations in a lot of the states, for example, decoding dyslexias all over the country. There's other kid type groups. We, we took our name actually after Boulder Valley, kid group who took theirs after Ohio kid. And so there's lots of parent groups and they're all in different forms of, you know, as any volunteer organization is, it's about what people bring to that table and what their passion is.

Yeah.