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23. Mary Ann Coulson - Advocacy · Learn Literacy Podcast

• Cheryl Urbanczyk: welcome everyone to the Learn Literacy Podcast, where we focus on teaching language for life by teaching literacy through language and structure. So today I'm very excited to have as my guest Marianne Colson who wrote an amazing book called Adam's Way and it is about her and her son and their journey together with his dyslexia and how she helped and supported him and how she's helping others in the community with education and support and lots of wonderful things. So welcome Marianne, thanks for being here today. Mary Ann Coulson: thank you, Cheryl. I'm just I was delighted when you reached out to me. So I'm happy to be here. Cheryl Urbanczyk: Great. Well, for some background for everybody, we met at the Lit Learn Conference, which is held annually by the International Dyslexia Association Ontario branch. And so we were across the way from each other. So that was really fun. So Mary Ann Coulson: Was good. Cheryl Urbanczyk: why did you write that book and why did you go around to conferences talking about dyslexia and sharing your story. Mary Ann Coulson: Well again, thank you for inviting me. So I started let's see, my son is now forty one years old. So I started working with him. I knew he was dyslexic because it runs in his family. I started working with specialists when he was five years old. So that's over thirty-five years ago. So thirty-five years ago, imagine I didn't have available what is available now. So I in putting this book together, I went back and found my legal pad and I had 19 pages of resources and people I called when I started this endeavor on just how do I help my son. He's five years old and he's dyslexic. So taking those resources, that that was just phone call after phone call after phone call, and it took me months to do that. And it was such an arduous experience, and thank goodness we were able to ultimately find resources for Adam, but it wasn't that easy thirty five years ago. So I thought, Why I'm I started I'm a copious note taker, very copious note taker. So I've been taking notes all along the way and I think I did that. Because eventually I wanted to put some kind of resources together for parents so they wouldn't have to go through this experience. So one night at a restaurant, I started writing an outline for a book, and it was called My Journey Towards Peace. So that was the original title of the book that I wanted to name it, Cheryl Urbanczyk: okay. Mary Ann Coulson: My Journey Towards Peace. So I still have that placemat from the restaurant as a keepsake. And so what I wanted to do was to provide parents and And teachers also, the resources that I use. So if you do look at the book, you'll see that it has lists of resources. It has 12 pages of schools. It has gay schools and boarding schools. really across from the United States, not not all of North America. And methodologies from the reading well, there's a whole list of methodologies specifically for children with dyslexia and beautiful testimonials. So after I did this work with Adam and found the right education for him, I started working with a lot of families that would reach out to me and I would help them with the resources where Go and what to do. So, an example, you can do this today. the I International Dyslexia Association which you already mentioned, is a phenomenal resource. So, no matter where the parent lived, I would call the state that they were in and they would give me a list of providers that these parents could reach out to that could help their children. And if you go to their website, now it's much more user friendly now than it was when I worked. was. It was word of mouth and they would fax to us, believe it or not. they don't endorse these, but they provide the the resources for, Cheryl Urbanczyk: Yes. Mm-hmm. Mary Ann Coulson: psychological evaluators, tutors like yourself for Orton Gillingham. So I put this together specifically just to help these parents because I'd been doing it for the last thirty years, helping other parents and families for children dyslexia. So I like to be organized and I wanted it in a kind of a one stop shop. That's why I did it. Cheryl Urbanczyk: And that's that's great. the resources are amazing and so important. But why was it important to you to thread so much of your own personal story through that as opposed to just let's say having a book about, advocacy, how to find resources, here's the resources and that type of thing. Mary Ann Coulson: Because I think, well, all of us learn so differently. However, children with dyslexia I think are often unidentified and overlooked. and not understood. So it was important for me to share Adam's story from Adam's perspective, not from mine. And you know, I'd I'd like to address the advocacy because you mentioned that and you're truly a star advocate. for those of you if you read the book there's stories from Adam's perspective because he thinks so differently than me. So I think the best example and somebody asked me, was there anything that visual that stirred you to write this book? And I said, absolutely. If so if you go to page one hundred and seven in the book Adam and I were at dinner one night and at this point he was so forward all the time and forward speaking and we discussed dyslexia a lot and he wasn't embarrassed about being dyslexic anymore and we talked about it and he was proud to be dyslexic. so we were sitting in a restaurant one night and he said, Mom, why don't you draw a square, a circle, and a triangle? And I said, well, that's easy. So I drew a A square, a circle, a triangle within each other. And he looked at that, he goes, that's really weird. That's really not what I asked you to do. And so I said, What did you ask me to do? What did you ask me to do? So within seconds, like if you look at the Cheryl Urbanczyk: have done that too by the way. I'm a two-dimensional thinker and no pictures. Yeah. Mary Ann Coulson: picture, within seconds, I can't draw what he drew. He drew a cube, a sphere, and a pyramid within each Cheryl Urbanczyk: Mm. Mary Ann Coulson: other. Cheryl Urbanczyk: Yeah. Mary Ann Coulson: And I still have it. It's the original. My drawing's here. Adam's is below. And Cheryl Urbanczyk: that's neat. Yeah. Mary Ann Coulson: he said, you know what, mother, he said that just proves that I think three-dimensionally. Cheryl Urbanczyk: Mm-hmm. Yeah. Mary Ann Coulson: so they see every they're artistic and he just thinks so differently than I do. So I read the book, The Gift of Dyslexia, which helped me immensely by Ron Davis. And I asked Ron Davis's group if I could include his book and his story in my book and they they agreed to do that. And he talked about developing the strengths of dyslexia dyslexics instead of suppressing them because they're so artistic. And so that was so important to me. So reading that book helped me understand Adam and how he thinks because he is so he and I are so different. So the other part of your question to answer that is I will tell you that every parent of dyslexics, maybe not every, but most every parent with dyslexics that have read the book come back to me and say, my goodness, that's my child. stories are all the same. So Cheryl Urbanczyk: Yeah. Mary Ann Coulson: it was important to tell it from Adam's perspective and who he was. And, you know, the cover of the book that Cheryl held up Is Adam's art project from senior in high school. And Cheryl Urbanczyk: cool. Mary Ann Coulson: it's an oil on acrylic and it was an old his old art building. I couldn't do anything, I could never even come up with anything like that. So today he is a construction engineer and architect techno he's majored in architectural technology and construction management, and it's clear that you know he's he was a designer for 13 years for a large grocery chain. So that's where he belonged. I couldn't do what he did. I hope that answers Cheryl Urbanczyk: well that's really neat. Mary Ann Coulson: your question. Cheryl Urbanczyk: it does. definitely. And I think, the power of the the personal story is amazing. every training I do, I talk about my personal story with my daughter. And yes, she sounds exactly like your son. So there's another person saying it's all the same kid. And a lot of the reaction I get from the trainees is like, they never really understand just how severe the difficulties are, right? And that because Mary Ann Coulson: Right. Right. Cheryl Urbanczyk: I kind of do a K2 university overview in a nutshell, and it's not a smooth journey. Like when you're not reading in grade five or six, for example. What do you do? How do you support? And so I I think hearing this and and seeing it on a personal level gives a completely different feel than, well, yeah, maybe they're behind, they need some help, you have to find some help. And it just kind of glosses over like the, the day-to-day struggle and and real challenges, that the kids have. And so one of the things I wanted to ask you about, because I when I read the book, I was really pleased at how you you put in there that you talked to him about having dyslexia and to be proud of that and not to be ashamed. And sometimes I see families maybe uneasy or not wanting to tell students or their children about it. But I I feel the same as you that it gives them a reason that's not them, right? Because mostly kids internalize things and think it's just, they're not smart or something. So what Advice would you give for a parent in that situation about bringing that up, sharing that with their child, supporting them through it? Mary Ann Coulson: So that's really a great question because I told you I bought the book and read The Gift of Dyslexia and I kept it Cheryl Urbanczyk: Mm-hmm. Mary Ann Coulson: out all the time because it were it uses the word gift Cheryl Urbanczyk: Yeah. Mary Ann Coulson: that you know Adam is gifted, much more gifted than me. And So some people still think that dyslexia is a curse. So sometimes I have to be careful because, you know, I I focused on it a gift for Adam that it was a gift for Adam. But Cheryl Urbanczyk: Yeah. Mary Ann Coulson: I talked about this in the book and we can talk about being an advocate because you like I said, you're a star advocate. Advocacy to me has several meeting meanings and it's a key word for helping our children. But what I did was I engaged specialists because when I was speaking to somebody to help me and I was telling what I was doing with Adam, we were going to school, he was going to school for eight hours a Sitting there doing nothing, not understanding what the other kids were doing. And then he would have tutors in the afternoon, and then we would go to Boy Scouts and then he would go to sports. And it was all over the place. And the the consultant I was working with said, you know, you're just you're driving me crazy thinking about your schedule. And I'm overwhelmed just talking to you. And he Cheryl Urbanczyk: Yeah. Mm-hmm. Mary Ann Coulson: said, You need to start being a parent and a mother. And so I started engaging specialists and worked with specifically people like you, Orton Gillingham and the tutors clearly saved Adam at the school he went to, but I also engaged speech language pathologist. And you can engage these different people. I had education advocate advocates, I had psychological, psychological evaluations done and the neuropsychologist worked with Adam one-on-one. I had counselors, specific counselors working with Adam, but the speech language pathologist worked one-on-one with Adam and they became very close. And he said, Adam tells me everything. I said, that's wonderful. So he worked with him and taught him that he was gifted. And he would come to me because he was he knew the school. Adam was going to a private school at one time, just a Cheryl Urbanczyk: Mm-hmm. Mary Ann Coulson: off on a Tangent. Adam went to five different schools by the time he was lived in five different states by the time he was 11. So imagine that. So we had public schools, private schools, we tried everything. This speech language pathologist specifically knew the school Adam was in. He was frustrated because they put him, set him aside in a cubicle. Because he didn't couldn't work with the other children. And he said he is so much smarter and so talented. And he got frustrated with what they were doing with Adam, putting him in a bugle. So he worked with Adam and and taught him and showed him about how talented he was. I wanna, if I can, that's Cheryl Urbanczyk: Mm-hmm. Mary Ann Coulson: that's an important thing that I wanted to mention about his going to school. So so this particular school, not criticizing the school because his teachers were fabulous and most every teacher we ever experienced really tried to help Adam. Cheryl Urbanczyk: Great. Yeah. Mary Ann Coulson: He wasn't ready to go to the first grade, so we decided to repeat kindergarten. In hindsight, that was a great experience for Adam because he didn't ever fail a grade. So we just sent him to kindergarten twice. And his kindergarten teacher was wonderful, and she'd been teaching for over 30 years, and she said, I just don't know how to teach Adam. And so we decided he wasn't ready for the first grade. But let me read to you what his art teacher, this is verbatim, what his art teacher wrote in his report card. And this is kindergarten. at he found Adam easy and enjoyable to teach. So imagine how confused we were. Here's what he stated in his report. Adam is working beautifully in art class. He loves to be creative and to work on ambitious construction projects. I marvel at his ability level and his sense of design. It's remarkable that he mentioned design and construction, and that's what Adam is doing. And this was in kindergarten, and he told me Cheryl Urbanczyk: Yeah, it's like prophetic. Exactly. Yeah. Mm. Mary Ann Coulson: he was seven. at the time. He told me Adam was one of the most talented children he'd ever taught. He was seven years old. So how do I go from that to where we did that? And Adam went through stages I you know of frustration like all students would. Like you said, we don't understand how difficult it is for them. we can't see it. We understand it but we can't we don't live it. And so he went through anger stages. He went through all those stages. And we finally got to the point where it's like, you know what? I am smart and I know what I'm doing. But what solved that was finding the right methodology to teach him. So Orton Gillingham, you and I talked about that. He Adam learned to read through a reconstructive language, which is Orton Gillingham based, and they used it in every class he was in, and that saved him. Once he started being successful and realized that he is bright, that changed his whole attitude about who I am. So Cheryl Urbanczyk: Yeah. Mary Ann Coulson: it it worked. But we had a lot of a lot of help, a lot of help along the way. Because Cheryl Urbanczyk: Yeah. Mary Ann Coulson: I became his mom, which was more fun. His mom and his parents and moved away Cheryl Urbanczyk: Exactly. Mm-hmm. Mary Ann Coulson: from being his coach and psychologist and teacher and tutor. Cheryl Urbanczyk: Right. it's hard being a parent and then having all these other things to deal with 'cause you do have to sometimes take on all those different roles and it's not easy. But it really resonated with me in your book. I think you said something like you felt like the Gao School saved him 'cause that's how I got into Orton Gillingham to teach my daughter and I really feel the same way about Orton Gillingham and how it saved her 'cause you know, if you're in grade five and you haven't learned to read and then you learn to read, it it's amazing. It's yeah. Yeah. Mm-hmm. Mary Ann Coulson: it changes your whole life. So Cheryl, I just want to mention that these conferences I've been going to since I published the book, and I've started going to the conferences so I could meet people like you and and provide more awareness. And I think there's much more awareness now than there was when I started thirty-five years ago for dyslexia and Cheryl Urbanczyk: Yeah. Mary Ann Coulson: a lot more resources. but I have met so many moms that were teachers and became specialists like you to help their children specifically. And that's a true advocate. I mean, that's just an amazing thing that all of you have done. I couldn't I could not have done that. So that's just Yeah. Cheryl Urbanczyk: Yeah. Many people I know in the OG community and around somehow get into it because of a family member, a child, a relation, a personal story. And that's the purpose, right? And then it becomes a greater purpose to keep helping others and things like that. So you you mentioned there's more awareness and resources now compared to when you started. Do Mary Ann Coulson: Mm. Cheryl Urbanczyk: you think we're quite there yet though? Mary Ann Coulson: Well, I think it I th I'm not in the system, but I'm still working with parents. I still think there's challenges with identifying and placing children in the right educational environment that they need. I think that's the struggle. Cheryl Urbanczyk: When you hear from families, do you see any difference, let's say, in the Canadian context or the American context, or it's kind of similar struggles everywhere? Mary Ann Coulson: I think the struggles are similar. I think what I understand is that there's so many more resources now available to you in Canada than there were in the past. Cheryl Urbanczyk: Yeah. I think we're we're slowly catching up. Mary Ann Coulson: Yeah, I but I I wouldn't say that you're any further ahead or behind. I'm not sure that I I wouldn't make that differentiation between the two at all. Cheryl Urbanczyk: That's good. That's good. Mary Ann Coulson: I don't I don't know your university system to know I will say that the university system in the United States is is obviously larger. It's a larger country as it relates to that, not geographically, but or land wise, but we had specific schools that Adam could choose to go to and specific schools that he couldn't even consider because of resources that were available to him. So i accommodations. So he could only go Cheryl Urbanczyk: Right. Mm-hmm. Yes. Mary Ann Coulson: to a university that could accommodate him. I don't know your I know that they're working more with your lower education. you know, younger students and high school students, but I'm not that familiar with the universities to know if they're a lot of accommodations available for dyslexics. Cheryl Urbanczyk: I think there's more and more. I know when my daughter was at her institution, she there was a student services office and she would go and get whatever support she could because she had the pieces in place, the Mary Ann Coulson: good. Cheryl Urbanczyk: you know, the identification, the paperwork, so forth and so on. the one funny thing that we found out is that she wanted to avail some of the services and talk to her professor and then he said, but I don't see your name on whatever list or something like that. So she went back to student services and they told her that she had to renew the services every semester. And we both laughed at that because it's like it's so counterintuitive. You know, you have kids who are coming who need help and they're nothing changes, you know what I mean? And yet the burden is on them to renew the services every semester. But Mary Ann Coulson: And did she do that? So Cheryl Urbanczyk: Yeah. Mm-hmm. Yeah. Mary Ann Coulson: what you taught her and what I helped Adam do as well. when he admitted he had dyslexia and and we moved on more positively than negatively, was he became his own advocate. So we were advocates as moms and taught them to become and I really stressed that to parents. I said, Cheryl Urbanczyk: Yeah, exactly. Yeah. Mm-hmm. Mm-hmm. Mary Ann Coulson: you need to teach your children to be advocates. So Adam went to the University of Cincinnati and he had the disabilities office. We actually visited, I think we visited five universities, and each university we went to, we went to the disability. Office. And let me backtrack what because I'm using the word disability, but I just want to mention that in the book, how I describe Adam is he has a learning difference. I don't use the word disability except for where it's formal. because Cheryl Urbanczyk: Yeah. She agreed. Mm-hmm. Right. Mm hmm. Yeah. I agree. Mary Ann Coulson: We don't think Adam's disabled. And so, but they'd call them Learning Disabilities Office, which is why I'm using that terminology. But ever most every place we went, they said most of the children who are entitled, because you do have to be entitled to the common accommodations, don't use them because they're embarrassed. So they go to university and they don't want people to know or understand that they're going to this office. Well Adam was the complete opposite because he was beyond that. It's like, you know what? I'm who I am and I'm proud to be who I am. So he went Cheryl Urbanczyk: Right. Yeah. Mm-hmm. Mary Ann Coulson: to, he met with Michael Southern, who's in the book. And I've spoken to Michael since Adam graduated. And Adam went to his office every week. And Michael was instrumental in getting Adam through Cheryl Urbanczyk: Funny. Mary Ann Coulson: the University of Cincinnati in those two degrees. And Michael told me last time I spoke To him, that he actually used when parents come to visit the school, he talks about Adam and says, if your child comes and works with me, this is what a positive outcome. And so they Cheryl Urbanczyk: Yeah. Mm-hmm. Mary Ann Coulson: need understand when they go to these universities, this is a a really a gift for them to have this accommodation that others don't have and to advocate for themselves. Cheryl Urbanczyk: Mm-hmm. Yeah. To use it when they need it. that's so true. So if you could I don't know what's the phrase, maybe wave a wand and put one thing in place that you think would help many families, what would that one thing be? Mary Ann Coulson: engage the specialists like I did because they were instrumental in helping me find Cheryl Urbanczyk: Mm-hmm. Mary Ann Coulson: people like yourself. I mean y that because I couldn't teach Adam when we would do his projects over the weekend, it was or, you know, school projects, book reports. It was so stressful for the two of us to work together Cheryl Urbanczyk: Mm. Yeah. Mary Ann Coulson: to try to do that. And it's better as I was advised, you need to be his mom. So, you know, find the speech language pathologist, find the Orton Gillingham tutors like yourself. the Independent psychological evaluation. So it I know that you said one thing, but one thing is hiring these specialists. And I also am encouraged people to use an education advocate because they went to the IEP meetings with me and helped me understand what the learning plan was for Adam. And if they didn't agree with the learning plan, we could amend it. And I don't know anything about structuring an IEP plan. So education advocates, some of this can be very pricey and expensive. Education advocates are very cost effective. I think, the tutors and the advocates for yourself are vitally important to help your children. Cheryl Urbanczyk: asking for help is so important because the community out is out there. there's so many of us out there. We like to help. And Mary Ann Coulson: Yes, yes. Cheryl Urbanczyk: but I I'm sure you felt that when you were a parent of a young child. I felt that when I was a parent of a young child and it's Mary Ann Coulson: yeah. Cheryl Urbanczyk: kind of like our own process to work through to be able to be like, we need help, we need to figure this out, we need to get going and it it isn't easy. But there is a lot more. Mary Ann Coulson: And when you find those people like you that wanna help, it's so refreshing and so it takes some of the burden and the stress that. Cheryl Urbanczyk: Mm-hmm. Yeah. knowing you're not alone. Because, you might not know other people, other children with dyslexia, other families that are going through something similar. And you just knowing you aren't alone is is so key too. So as we wrap up our conversation, what would be a piece of advice? I know you talked about getting advocates and and this kind of thing, but any other piece of advice, how about maybe for a teacher, something they could look for or learn about or know about kids with dyslexia? Mary Ann Coulson: I think as a parent it's a it's a long journey and I think sometimes parents want to give up. They get so they don't understand the system, and I just think that you can't give up. This is your child, and it doesn't matter how exhausting this is, and stay positive with that. As far as the teachers, it was important to me to work with them and along the way, like I said, they would tell me they couldn't didn't understand how to teach Adam. But I worked with them and they were they were so good to him because he was a good kid. He wasn't disruptive. All they wanted to do was to help. But what they did for me, and I think if more teachers could do this, was they directed me where to go instead of leaving Adam and letting him, you know how they use that terminology, falling through the cracks? Instead Cheryl Urbanczyk: Right. Mm-hmm. Mary Ann Coulson: of Adam falling through the cracks, they came to me and said, you know what? Let's try this. Let's find an Orton Gillingham tutor. Cheryl Urbanczyk: Thing. Yeah. Mary Ann Coulson: let's take him to the Huntington Learning Center to be tested and to find out how we can maybe take them on weekends and out, away from school and have some extra education. So I worked with them instead of against them. Cheryl Urbanczyk: That's good. Yeah. Mary Ann Coulson: I didn't criticize them because Adam wasn't learning to read. It wasn't their fault. Cheryl Urbanczyk: I think that what you're saying there is just very key. A lot of times they don't have the training or resources, even understanding what to look for in terms of signs Mary Ann Coulson: Right. Cheryl Urbanczyk: to notice dyslexia. we're still trying to advocate and educate there so teachers have the tools and resources they need to support kids. Mary Ann Coulson: also directed me to the Gal school. So I Cheryl Urbanczyk: Mm. Mm-hmm. Mary Ann Coulson: got transferred ten minutes from the Gal sch nobody would know that, but I got transferred ten minutes from the Gal school. Like who would have thought that? And however, Cheryl Urbanczyk: Exactly. Mary Ann Coulson: before sending Adam to the Gal school, I researched schools across the country. So the Gal school wasn't the only consideration, but it happened to be one of the most renowned schools for children with dyslexia and we were just fortunate that it was ten minutes away. and the teachers in the fifth grade when he was in the fifth grade, even though it didn't start till the seventh grade. So anyway, they really helped me along the way. So they were good. Cheryl Urbanczyk: It's wonderful. Well, thanks Marianne for sharing all these things. I'm going to show your book again and I will link your Mary Ann Coulson: Thank you, Cheryl. Cheryl Urbanczyk: website to the show notes and things like that so people can go to it and hopefully order it and read your story and find all the great resources there. And I just so appreciate your time today. Thank you very much for a wonderful conversation and sharing about your son and Both of you being brave to put your story out there so you can help others. So thanks so much. Mary Ann Coulson: Thank you, Cheryl, and thank you for and the invitation and for all that you do. My goodness, you've been great. You wanna help as many peop and as many families. Cheryl Urbanczyk: You're looking at it. Mary Ann Coulson: We're all the same as we can. So thank you for that. Cheryl Urbanczyk: Yeah, definitely. thank you.