Learning Disabilities and Mental Health with Learning & Behavior Consultant Bev Johns

We sit down with learning and behavior consultant Bev Johns to discuss the prevalence of mental health issues in individuals with learning disabilities, current mental health statistics, and strategies for parents and teachers to monitor and work with students with mental health issues and LD.

Read the Transcript

Lauren Clouser, Host:

Hello, everyone. Welcome to the LDA Podcast. I’m here today with Bev Johns. She’s a learning and behavior consultant and she’s also the President of the Illinois. So thank you, Bev so much for being here with us.

Bev Johns:
It’s delightful to be here. And I’m looking forward to talking about the topic of children with learning disabilities who may also be exhibiting mental health issues. My entire career has been focused on working with students with emotional and behavioral problems, and I’ve learned through many years of experience about the complexity of children’s needs, and that we cannot assume that it is just one thing that might be going on with that child, but it might be a lot of other factors, and therefore, good parents and good educators look beyond what is observable behavior. So it’s my privilege to talk about this topic with you.

Lauren Clouser, Host:

We’re so glad to have you. So let me dive right in. So are individuals with learning disabilities more likely to have a mental health issue? And if so, why is that?

Bev Johns:

Well, imagine if you have a written expression problem or if you have a reading problem and you’re expected to go to school every day and do something you don’t do. Well, might that cause anxiety? Yes. Imagine that you fear that someone will find out you have a learning disability and won’t want to be your friend anymore. Imagine that you know you are smart, but you just can’t perform some of the tasks other people can do. These are real stressors that can lead to anxiety or depression. Some figures show that children with learning disabilities may be four times more likely to have mental health problems than children without learning disabilities.

Lauren Clouser, Host:

Well, so which mental health issues in particular are common for those with LD? I know you mentioned depression and anxiety. Are those the main ones?

Bev Johns:

Anxiety disorders are recognized certainly as the most prevalent mental health issues among children and adolescents, impacting about 25% of children between the ages of 13 to 18, and those were figures that were provided prior to the pandemic. Now it’s estimated by some that the number may have doubled. There is a growing concern about the fact that one fourth of our children have experienced now traumatic stress, the stress of the pandemic and now the worry about war are of concern to us because of the impact on children. All of the stressors that children are facing tell us that parents and educators have to work together to provide mental health supports and training. An example recently given in Education Week showed that in the first eight months of the pandemic alone that the share of mental health emergencies, including suicide attempts, self harm and serious panic or depressive episodes jumped by about a quarter for children 5 to 11 and nearly a third for those 12 to 17. Children with attention deficits or depression had a higher risk of suicide, but the National Institute of Mental Health found that less than a third of the children who die of suicide had a previous diagnosis of mental illness.

Suicide now has become the leading cause of death for those students 10 to 14, and the 10th leading cause of death of those ages 5 to 9, according to the Centers for Disease Control. And according to them, 3.2% of children aged 3 to 17 years have diagnosed depression. A difficult temperament we know also as a young child can be a strong predictor of depression. And very bothersome to me is that it’s been reported that emergency room visits related to mental health have increased by 5 to 11 year old children.

Lauren Clouser, Host:

Wow. So these are some young ages, younger than a lot of people might originally think. How young can somebody be diagnosed with a mental health issue?

Bev Johns:
For many years, it was believed that mental illness wasn’t seen until students reach their preteen and teen years. Now we’re seeing, as we talked about earlier, young children, perhaps at 5 years of age, who are showing signs of anxiety. And now there are concerns about children. Speaking of suicide at the age of 5, some studies have shown that a difficult temperament, even as a baby, could be a strong predictor of depression. I think that if a parent is seeing signs of emotional distress in their child at an early age, they need to speak with their pediatrician about what they’re seeing. They should also be talking with school personnel to see whether the school is seeing some similar behaviors of concern. And there are now discussions occurring about including in early childhood screenings, questions about self harm and suicide.

Lauren Clouser, Host:
So what are some of these signs that both parents and teachers can be on the lookout for that might signal a mental health issue?

Bev Johns:
Sure. Changes in behavior causes concern. The child may withdraw from activities that they used to love to do. They may have trouble sleeping. There can be health complaints, stomachaches, headaches, their eating habits might have changed. They may have lost their appetite as an example, and they might be exhibiting nervous habits such as nail biting or shaking. ‘How long of a period have those behaviors been going on?’ Is an important question for us to ask. If they’ve been going on for six months, it is a major concern, and we need to collaborate with others and seek help.

Lauren Clouser, Host:
So when teachers notice a mental health issue or they have a student who’s diagnosed with a mental health issue, what sorts of accommodations can be made in the classroom? Are there behavioral strategies that can help increase student success?

Bev Johns:
Well, the first one to me is the golden rule is never take good behavior for granted, reinforce it, and what I mean by that is we need to build children up, learn as much as possible about their strengths and their interests and capitalize on them. Children should come to school and be successful, and we can do that by looking for what they do well and assisting them in what they need extra assistance in, so often saying, how can I help you with this? We need to build positive relationships with them and engage in active listening. We also need to look closely at the task we’re giving to children to determine whether the task itself might be causing anxiety. Too many worksheets with too many directions, and crowding on a page is just one example of something that children face in the classroom that can be problematic, and it’s important to focus on the child’s feelings rather than your own and to curtail your emotions. It’s also critical to recognize the students when they overcome a problem situation, so they’ve learned to deal with the situation. We need to recognize that and let them know. We also have to watch preferential seating because we often assume that a student with anxiety should sit in the front of the room and that might not be appropriate because the child is worried about what’s going on behind him.

Break assignments down into small segments. Certainly build in choices, but not too many choices because too many choices brings on more anxiety. For children with anxiety, we need to be careful of the use of timers because those may be upsetting to them. They’re so busy worrying about ‘when is the timer going to go off? When is the time are going to go off?’ That this may not be an effective practice for them. So remember to instead say things like, let’s do two more together, as opposed to using timers. Also look for triggers that might upset the child and avoid any of those triggers. And then it’s important because we are working with a lot of children who have problems in the area of auditory processing because they’re so worried in their head about what’s going on, they’re not always processing the information that we’re giving to them auditorily. So remember to only give one step directions that are always positively stated, and make sure we involve vocabulary words that we know the child is familiar with.

Lauren Clouser, Host:
So what are some things that teachers should keep in mind when they’re working with a student who has both an LD and a mental health issue?

Bev Johns:
Well, I think first and foremost we need to not make assumptions based upon children’s observable behaviors, because underlying those observable behaviors may be issues that are far more complex and involve a mental health issue. For instance, the child may act out because of anxiety or because someone moved his book out of place and he has obsessive compulsive issues. I always remember a little guy that I worked with, he was one of my favorite students. None of his materials could touch other materials. So in other words, the reading paper couldn’t touch the math paper, couldn’t touch the social studies paper. Well, if they did touch, somebody forgot and that happened, he might start screaming because his pattern was upset. And so it was related to what was going on with the child. But the observable behavior was the screaming. But if you didn’t understand what had happened before, you wouldn’t understand how to work effectively with the student. That was always a trigger for him. It’s also important to stress the student’s strengths and interests and let them know that they can be successful and it’s critical that we let our children know that they are valuable to other people.

I am a firm believer in community service projects where children have the opportunity to help others, such as in peer tutoring or helping at a food bank or reading books to younger children or sending cards to the elderly and nursing homes. My dear friend Eleanor Gelo wrote a book early on about suicide in children, and one of the things she stressed is that children need to feel a value to other people. So what better way to feel valued than doing things for others?

Lauren Clouser, Host:
Absolutely. On the flip side, what should parents keep in mind if they have a child with LD and a mental health issue?

Bev Johns:
Okay, I really believe that parents are critical to this role and careful observation of their children during different activities. So are there certain activities or times of the day that are more upsetting to the child than others? Can they identify the trigger? I think the parents also have to look at whether their child’s behavior has changed as we talked about earlier, or are their sleeping patterns changing? Are their eating habits changing? And try to determine that maybe the behavior of the child is more complex than you think. Observe how long you’re seeing a pattern of behavior. If the changes in behavior have lasted six months and you still can’t figure them out, please solicit assistance and talk to the school and see if the school is seeing some of those same behaviors. It’s also important that the child feels supported by the parent and listened to by the parent. So listening to your children and what they’re saying to you is critical. Parents need to be active listeners with their children and to pick places like in the car or during cooking or walking where they’re side by side where the parent is listening to understand, not to respond.

And it’s also important to recognize rather than denying children’s feelings, because if a child says something is too hard for them to do, rather than us saying, ‘oh, that’s easy’, we need to say something like, how can I help you with it? Or Tell me what’s hard about this task that I asked you to do. So always listening to what the child is saying to us.

Lauren Clouser, Host:
Just to wrap up, what are some resources that parents and teachers can have if mental health issues are noticed, what are some of the first steps?

Bev Johns:
Well, I think again seeking out assistance. I encourage teachers and parents to avail themselves of all the wonderful resources of the Learning Disabilities Association of America, and if they’re in a state that has a state affiliate to avail themselves of the support that LDA gives to families and educators and has given for many years. Because it is just nice to connect with parents and educators who are going through things that you’re going through. LDA America now offers a wealth of webinars, printed resources, and the conference. And the conference which will be held next February and you will see a number of mental health sessions there. There is also a quarterly mental health and learning disabilities newsletter, so reach out and make sure that you get your copy of that. As an example, our next issue is focusing on bipolar disorders. So we really appreciate the support that LDA of America and in different states provides to families and to educators.

Lauren Clouser, Host:
Well Bev, thank you so much for those resources and for spending time talking and sharing your expertise.

Bev Johns:
Well, you’re very welcome. It was delightful for me and so I appreciate having the opportunity to do so.

Lauren Clouser, Host:
Thank you for listening to the LDA podcast to learn more about LDA and to get valuable resources and support, visit ldamerica.org.

Signs of a Learning Disability

There may be a number of reasons why you or your child is having a hard time with oral language, writing, reading, or math, but this could also indicate a learning disability.

Learn to recognize signs of a potential learning disability. If you have observed several of these signs in yourself or your child, you may want to consider the possibility of a learning disability.

Pronunciation problems
Difficulty finding the right word
Difficulty making rhymes
Trouble learning numbers, alphabet, days of the week, colors, and shapes
Trouble concentrating
Trouble interacting with peers
Difficulty following directions or learning routines
Difficulty controlling pencils, crayons, or scissors

Trouble learning the connection between letters and sounds
Confusion with basic words (run, eat, want)
Consistent reading and spelling errors including letter reversals (b/d, inversions (m/w), transpositions (felt/left), and substitutions (house/home)
Difficulty learning basic math concepts
Trouble learning about time
Difficulty learning new skills
Trouble remembering facts

Difficulty with reading comprehension or math skills
Trouble with letter sequences (soiled for solid, left for felt)
Difficulty with prefixes, suffixes, root words and other spelling strategies
Trouble organizing their bedroom, notebook, papers, and desk
Difficulty keeping up with papers or assignments
Trouble with handwriting
Difficulty with time management
Trouble understanding oral discussions and expressing thoughts out loud

Spelling the same word differently in a single document
Difficulty taking on a reading or writing task
Trouble with open-ended questions on tests
Struggling with memory skills
Difficulty adapting skills from one setting to another
Struggling with a slow work pace
Trouble with grasping abstract concepts
Difficulty focusing on details
Frequently misreading information

If you see several of these signs over a period of time, consider the possibility of a learning disability.

For further reading:

What is a Learning Disability?

Learn more about what constitutes a learning disability.

Types of Learning Disabilities

Learning disabilities can impact oral language, reading, written language, and/or math. Learn the names and defining features of each LD.

About LDA

Learn more about how our grassroots nonprofit works to improve the lives of individuals with learning disabilities through support, education, and advocacy.

Celebrating Young Advocates: Meet Jordan Greene!

Heard on The LDA Podcast

Jordan Greene is a college freshman with ADHD, an author, motivational speaker, and an advocate for individuals with LD and ADHD. In middle school, Jordan saw the bullying she and her classmates with LD or ADHD faced, and decided to do something about it. Ever since, Jordan has worked to educate others about LD & ADHD, and is spreading the message that there’s nothing wrong with being different.

Learn more about Jordan and find her two books based on her own experience “The Confidence Club” and “My Gift of Difference” at https://www.jordanagreene.com/

Read the Transcript

Lauren Clouser (Host)

Welcome to the LDA podcast, a series by The Learning Disabilities Association of America. Our podcast is dedicated to exploring topics of interest to educators, individuals with learning disabilities, parents and professionals to work towards our goal of creating a more equitable world. Hi, everyone. Welcome to the LDA Podcast. I’m here today with Jordan Greene, she’s a college student, motivational speaker, author and advocate. So Jordan, welcome.

Jordan Greene

Thank you so much. I’m so glad to be here.

Lauren Clouser (Host)

We’re so we’re so excited to have you. So could you start off to tell us just a little bit about yourself? What are some of your hobbies, your passions? What are you studying right now?

Jordan Greene

Yes, absolutely. Well, hello, everyone. My name is Jordan Greene. I am a freshman in college, and I’m studying education and law. And I’m an author, advocate and leader, and I am passionate about advocating for learning disabilities. So then my hobbies are I love to paint, I love to draw. I love journaling. But most importantly, I love being able to be an advocate and use my platforms on Instagram, and just social media to be able to advocate more for disabilities.

Lauren Clouser (Host)

Absolutely. Well, that’s how we were able to connect as well as originally through social media, you’ve done a lot of posts, a lot of sharing awareness and spreading awareness, so you’ve been doing a great job so far. Would you be able to tell us about the journey of your learning disability diagnosis?

Jordan Greene

Yes, absolutely. Well, I have ADHD, and I found that I had ADHD back in when I was in fifth grade. I was always generally a pretty A, B student. I never really struggled in school. But in fifth grade, everything changed, I felt like I kind of just hit this wall. I couldn’t remember what was taught in class. I couldn’t pay attention. I couldn’t sit still, I was very inattentive, and I couldn’t figure out what was wrong. I would spend hours on homework every night, I would be crying on Sunday because Monday was coming and I had to go back to school. And no matter how hard I tried or studied or met with tutors, nothing was clicking. And my teacher said I wasn’t trying hard enough. My parents were frustrated with me. My peers called me the slow kid. And that was like, what is happening? Why can’t I learn? Why am I always the last one to finish my test and to turn in my assignments?

And then one day my parents wanted to get me…had the idea of maybe I had a learning disability. So I went in, and I got diagnosed with ADHD. And ever since then I’ve been on this journey of kind of embracing that and realizing how ADHD affects me, what are ways that I can put things in place so that I can be more successful in that. And it’s led me here. So it’s definitely been a beautiful, but long journey. But I’ve come to a place now where I’m just embracing that. And I just love my brain and how it works.

Lauren Clouser (Host)

Absolutely. Yeah, to go from that place of just frustration, to be able to get some answers to know what’s happening, to know how your brain works. I’m sure that was huge.

Jordan Greene

Yes, it definitely was. At first I was like, okay, I’ve heard of ADHD, what does that really mean? So I went on the internet, and I was like, what is ADHD? How does it affect me? And I wanted to be an expert on how my brain works. I really had to put in work and research into knowing that. And it’s paid off because I can now tell other kids, like, what this means and how it might affect you.

Lauren Clouser (Host)

Absolutely. So yeah, just to touch on that a little bit more, what led you from becoming somebody who has ADHD to somebody who has become an advocate for learning disabilities and ADHD?

Jordan Greene

Yes, that’s a great question. Back in fifth grade, in middle school, I realized that I was not the only kid in my class who had ADHD, who had a learning disability. And I would watch, particularly one student in my class just beginning to kind of shrink back from themselves, they would feel so embarrassed when they had to read out loud because they were struggling to read. And they would…I would see other kids call them slow or call them dumb, and I was like,that’s not okay with me. Like, we’re not slow. We’re not dumb. Our brains are different than yours and that’s okay. So it was then just seeing incidents like that along my middle school career, I was like, someone needs to stand up, someone needs to break the narrative, break these like negative connotations, and learn to embrace it.

Jordan Greene

So I decided then that I wanted to be an advocate. And I wanted to begin to teach kids to embrace their own disabilities, because it really truly is a gift. So that’s kind of how it started. And then that led me to publishing books and even some articles, and a whole journey of things.

Lauren Clouser (Host)

Yes, I can’t wait to talk to you about your publications. But I love how you saw the problem. You saw, hey, this has a lot of stigma, and somebody should speak up about it. Why not me? So I love that and just something I wanted to ask too, you know, you mentioned some bullying, some feedback from people who are saying, ‘oh, they’re the slow kids.’ How would you recommend somebody who might be in that situation now, who might be getting those labels? How would you recommend that they sort of overcome that? How can they build resilience?

Jordan Greene

Yes, the resilience is such an integral part of this journey and having that, but I would definitely say that I think first you have to embrace and accept yourself before you can expect that from anybody else. So for me, I really had to take time to be like, you know what, I don’t mind if I’m not as fast as other kids, I do take a little bit more time. But that’s okay. Because that’s how I was made. And I’m fine with that. So I would really suggest getting to learn to embrace yourself, and being confident in who you are, know that it’s cool that your brain works differently. Like that’s like a kind of like a superpower that you have to really spend time in that. And don’t worry about what anybody else thinks, because like, you’re you and like, that’s the most important thing. If we were all the same, it’d be a very boring place. So just start on the inside work. And for me, I did a lot of journaling during that time. Because journaling is how I express myself, I did a lot of journaling and self-reflection, and like, you know what, I’m gonna come out of this, and I’m gonna choose to embrace and just shine this new life that I have.

Lauren Clouser (Host)

I love that answer. Starting with yourself, realizing that you do think differently and that’s not necessarily a bad thing. So to start with your publications here, can you tell us about your first book, My Gift of Difference? How did you decide to write that book?

Jordan Greene

Yeah, so the idea for that book actually came over Thanksgiving break. And in fifth grade I was with my family, and we were just talking about the school year so far. And I told my mom, I was like, Mom, these kids in my class, they don’t understand what ADHD means. They don’t understand what dyslexia or ADD means. And I want to be able to tell people, I want to share my story. And I want other kids to know that it’s okay to be different. You don’t have to feel shamed. And she said, well write a book about it. And I was like, oh, yeah, maybe I’ll write a book about it. So I just started writing ideas, writing my story, writing questions and prompts that kind of helped me during that time. And a couple months later, this book was born because of just me wanting other kids to know it’s okay to be different. I didn’t want any other kid to feel alone like I did at first, because community is so important. And it’s so beautiful. And that’s how my book, My Gift of Difference was born. And since then, I’ve been able to travel across the country to speak to schools about it, and really empower those kids who might have felt left out or might have felt less than because of how their brain works.

Lauren Clouser (Host)

That’s amazing. And again, it just all sort of ties back to your main message of just spreading the word that learning disabilities and ADHD aren’t something to be ashamed of. Well, I just wanted to talk a little bit more, you have so many different endeavors going on. Could you tell us about the Confidence Club and The Shine Room?

Jordan Greene

Yes. So the Confidence Club is my second book that I published, and that one is kind of based on my life. I moved around a lot as a kid, and at every school it was kind of hard to find friends, it was kind of hard to build confidence. And I was like, you know what, I can use my story again to help other girls feel confident. So it’s about a middle school girl who just moved to a new school in a new state, and how she just encounters mean girls, bullies, and how she learns eventually just to be confident in herself. Because part of what I want to be known for is just embracing other kids and helping them be confident. That’s what that book is about.

Jordan Greene

And The Shine Room is one of my newest endeavors I’m doing, it’s a series on my Instagram. And it’s all about shining a light on diversity and inclusion. Because that space is often not well lit, people look at it as like a really sad or dark thing. But it’s not, because we’re here, we’re loud about it, and we can be proud about it. So it’s all about highlighting people in this community who are just doing amazing things. I have a new series episode is gonna go out pretty soon, actually. So stay tuned for that if you guys would like to see it. But it’s all about just shining a light on different people or organizations or just like conventions that are in that disability and inclusion space.

Lauren Clouser (Host)

Absolutely, and we’d love to get some links for all of those things, too. We can include them in the show notes so people can follow up on what you’re doing, I’m sure people would love to see that.

Jordan Greene

Yes, and actually, this happened really recently. But last month, I was invited to be the youth representative for the Georgia Learning Disability Association of Georgia’s board of directors. And that is such a huge honor. I’m just so excited to see how this position goes. And it’s very new. So I’m still kind of getting committed to it. But I’m just really excited and honored to be a part of the mission here in Georgia.

Lauren Clouser (Host)

Absolutely. Well, we’re fortunate to have you on board. Well, and before we move on, are there any other publications that you want to talk about? I know you mentioned some articles.

Jordan Greene

Yes. So I did an article, I think a couple of years ago about vicarious trauma. And it’s all just about like the trauma of human experience from being isolated from people. And as someone who has a disability, there’s a lot of times where I just felt very isolated and didn’t have community and felt very alone. But I wanted to bring a light to that and just provide more insight on community in that. So that’s what that article is kind of about. And I wanted to just, you know, let other kids know that you’re not alone out there. There’s someone just like you, who is going to be confident in it and embrace that.

Lauren Clouser (Host)

Absolutely. Well, you just have so much drive and resilience. And I just wanted to know, where did you get that from? I know we talked a little bit about how it starts with saying, hey, I learn differently, there’s nothing wrong with that. How have you built this into…it’s been able to let you advocate for so many different people and spread the word and I’m sure help a numerous amount of people.

Jordan Greene

Yes, I’m so glad you asked this question because when I was first diagnosed with ADHD, that was one of the lowest points in my life, I felt like I was a mistake. I feel like there was something wrong with me, no matter what I did, like nothing would work. And I would just kind of sit in my room sometimes alone and just like, just wonder like, why me, what’s wrong with me? And on one of those really dark days my mom came in and she showed me this Bible verse that says, “you are fearfully and wonderfully made.” And it’s like a light bulb went off in my head. I was like, wait, I really want to be me. But there’s no mistake in me like I’m made just how I’m supposed to be. So my faith really gave me the confidence I needed to just use it as a gift and as a foundation to let other kids know you can just be who you want to be. And ever since then, whenever I have times where I do doubt myself, or because I’m in college, and school is still difficult for me, like I’m still on this journey. I go back to that verse. And I’m like, You know what? I’m fearfully, wonderfully made. And I want every other person out there to know that they are too and there’s no mistake about you, and you’re made just how you’re supposed to be.

Lauren Clouser (Host)

I love that. Yeah, that’s awesome. Well, and just if we could talk about that, too, I don’t know if we’ve interviewed anybody who’s currently in college right now. Could you tell us a little bit what it’s like for you?

Jordan Greene

Yeah, so I’m a freshman in college. And this is my second semester, so I am like, really in the thick of it. And it’s definitely different than high school. But I’ve realized the importance of advocating for yourself, because I went to a smaller high school and all my teachers knew me, knew my accommodations. But in college, your professor has a bunch of other students, and they may not remember everything that you need. So you really have to meet with professors and advocate for yourself and say, like, I have this accommodation. How can I take this test with this time, or whatever it is. But the journey has been a little bit rocky in the beginning. But I think that now I’m kind of finding my rhythm and finding that. But I realized that I do have to put in way more studying time than I did in high school, because this information is so much more in college. But it’s been going really well. It really has helped me develop even stronger advocating skills for myself, and for other girls here on campus.

Lauren Clouser (Host)

That’s so great. Well, I’m glad it’s going well for you. So do you have a favorite experience while you’ve been advocating for learning disabilities and ADHD? Is there a moment that sticks out to you?

Jordan Greene

Yes. So actually, like I think, a couple of months ago, I’m on the National Center for Learning Disabilities Youth Council, and PBS reached out to them and wanted to do a documentary featuring some of the young advocates in college. And they recommended me for this opportunity. And a couple months ago, PBS came out to my campus and kind of asked me some questions and interviewed me about how my journey has been as a college student with a disability who is also an advocate. And it was just such a cool experience, because they have the cameras there, like I felt very important, like I was able to just share my story. And it airs soon, it has not aired yet. But it was a really, really cool opportunity. Because I was like, wow, my work is kind of paying off now. I think we’re being able to just learn more about disabilities and not have this negative misconception about it. But it was very exciting, and I’m looking forward to more exciting things to come in the future.

Lauren Clouser (Host)

Absolutely. We’ll have to look for that, that’s awesome. So what advice would you give to another young person with LD, maybe somebody that’s in that rough spot that you were years ago, but what would you say to them?

Jordan Greene

I guess I would say, don’t give up. Like I know it’s hard. I know you’re struggling, I know it feels so long, but please, do not give up. Because we deserve the same amount of joy and peace anybody else does. I would say I know it’s hard. I know you feel a lot, but please don’t give up because there’s something so special about you. And not everyone gets to think the way that we think, so it’s kind of like a superpower. You know, just lean into that a little bit. But please don’t give up and know that you are made exactly how you’re supposed to be. There’s no mistake about you.

Lauren Clouser (Host)

So tell us about your plans for the future.

Jordan Greene

Yes, so after I graduate, I want to attend law school. My big goal is to be able to attend law school and get my JD, but to really impact positively policy for education and disability in our school systems, like that’s what my dream job would be, is to just continue to reform and create more equitable policies for education and disabled students in our schools. So after that, that’s what I plan on doing. It’s just working in that law and policy field, and hopefully that can lead to some more careers down the road. But I’ve definitely seen myself working closely with organizations like this. That’s where my passion is. And I want use to my passion of law and advocacy back together.

Lauren Clouser (Host)

Absolutely. Well, we’re definitely rooting for you. And we definitely need you.

Jordan Greene

Thank you so much.

Lauren Clouser (Host)

Well, and is there anything else that you wanted to add, or any other messages before we close out?

Jordan Greene

I think I would say just continue to be yourself and keep shining your light. We’ve all been given just this, you know, a light unique to you. And just to shine like, don’t shy away, don’t do it for anybody. Shine your light and be yourself because being different is definitely a gift.

Lauren Clouser (Host)

Absolutely. Well, Jordan, where can people find you? Where can they find your books? Where can they keep up with you, I will have some links in the show notes too.

Jordan Greene

You can connect with me on my website, jordanagreene.com. And the Greene has an ‘E’ on the end of it. Or my Instagram, which is @jordanagreene as well. And even on LinkedIn is Jordan Ashley Greene, I post a lot of my Shine series on there, my new books, and products coming out. So please, you know, stay tuned, follow or visit the website for all information. You can see my books on there as well. My books are also on Amazon.

Lauren Clouser (Host)

Awesome. Well, we’ll have links to all of those things. And, Jordan, thank you so much for all of your advocacy work and for reaching out and letting people know that they’re not alone and, just because they think differently that’s a-ok.

Jordan Greene

Thank you so much for just all the work that you’re doing. And just like looking out for this organization. I’m just so excited and honored to be a part of it. So thank you so much.

Lauren Clouser (Host)

Thank you for listening to the LDA podcast. To learn more about LDA and to get valuable resources and support, visit ldaamerica.org

Celebrating Young Advocates: Meet Aashna Shah!

Heard on The LDA Podcast

Aashna Shah is a junior in high school, Miss Florida’s Outstanding Teen, an author of three books, a motivational speaker, and a passionate learning disability advocate.

Aashna shares her journey through her learning disability diagnosis, discusses her book series on destigmatizing learning disabilities, talks of the learning disability stigma in the Indian community, and much more!

Get to know Aashna and learn more about her awesome advocacy work in Florida!
Visit: shahaashna.com

Read the Transcript

Lauren Clouser, Host

Welcome to the LDA podcast, a series by The Learning Disabilities Association of America. Our podcast is dedicated to exploring topics of interest to educators, individuals with learning disabilities, parents and professionals to work towards our goal of creating a more equitable world. Hi, everyone. Welcome to the LDA Podcast. I’m here today with Aashna Shah. She’s the 2022 Miss Florida’s outstanding team, author, speaker and learning disability advocate. Aashna thank you so much for being here.

Aashna Shah

Thank you so much for having me. I’m so excited to be on today’s podcast. I’m a big fan of LDA. So thank you so much for having me.

Lauren Clouser, Host

Of course, we’re so happy to have you. So could you start out by telling us just a little bit about yourself? What are some of your interests, your passions?

Aashna Shah

Of course. So, my name is Aashna, like you said, I’m Miss Florida’s Outstanding Teen. I am in 11th grade at Palm Beach High School. I’ve been dancing since I was three years old. I’m technically trained in Indian dancing and Bollywood dancing. I love to bake. I was diagnosed with three learning disabilities. And I’m an author. And I think that’s like a little rough start. But there you go. That’s a little bit about me.

Lauren Clouser, Host

Absolutely. Well, it’s such a long list too. So I think you did a good job of covering and we’ll cover some more things in depth here. But could you tell us a little bit about your experience with learning disabilities?

Aashna Shah

Of course. So I was diagnosed in eighth grade. And I think the best way to define my experience of my learning disabilities would be like a roller coaster. It was really difficult for me in the beginning. And I think I’ve gone up, but there’s obviously ups and downs with learning disabilities. But I’ve gone from thinking that my learning disability was the end of the world to now seeing it as a superpower. So it’s kind of just been all over the place. But I realize the value and how it’s a blessing in disguise now.

Lauren Clouser, Host

Could you tell us a little bit of that journey of going from the “oh my gosh, it’s the end of the world” to sort of embracing it. How did you get there?

Aashna Shah

So when I was first diagnosed in eighth grade, I actually went through a 15 day period where I was in bed rest. Because after my diagnosis, I had such a bad anxiety attack, I had an anxiety migraine for like, 15 days long. I just sat in bed, I could not believe that this was real life. I grew up in an Indian household, where learning disabilities are a big taboo, we don’t talk about them, you know, we are perceived by the Indian community, like every single child is perfect. We don’t show our imperfections. So it was a really big shock.

My first question when I was younger and my parents told me that I have dyslexia was is there a cure? What’s the cure? Like, let’s do it. And they were like, there is no cure, necessarily. Your brain is wired differently. So I had a hard time understanding and grasping that. And so in that 15 day period, when I started cognitive behavioral therapy, they had actually told me to start journaling all my thoughts, all my feelings, everything that I think could be about dyslexia, everything that I have just been feeling. So that helped me a lot, I think.

And then as I went into my freshman year in high school my parents fought for my accommodations. My school wasn’t going to give me accommodations because I was a straight A student my entire life until eighth grade. I got a bad grade in science, science is my favorite subject. I don’t even know how I got a bad grade. And that’s actually why I got diagnosed because of my background in science, because I was on an advanced placement science program.

So when I went into freshman year my parents were my voice for me, they fought for my accommodations, and I’m so extremely thankful that they did, because that gave me a little bit more confidence going into my freshman year. I was able to use my accommodations and learn how to advocate for myself, and how to get myself extra time and all these other things that I didn’t even know were possible. And so that helped me a lot to gain the confidence.

But I think it was really in tenth grade, when I realized that there’s so many kids out there that were just like me, they struggled so much with their learning disability. They come from Indian households, and they don’t even understand what a learning disability is. And their parents probably aren’t fighting for their accommodations. And that’s when I realized I want to be the voice that my parents were for me.

And that’s when I realized that I need to embrace my learning disabilities, I need to start helping others with their learning disabilities now that I’ve been able to use my accommodations and I had the privilege of getting accommodations. And that’s when I started writing my first book “Dynamic Diya: Dyslexia is her Superpower.”

I used my journals kind of as an outline when I was journaling when I first got diagnosed. I had written down so much in them. And I use that in my books, I use that information, the things that happened to me that I realized were because of my dyslexia. I put it into my book, I wrote a prologue to parents telling them symptoms, signs, ages they should get their kids tested. And when I was writing all this, in the back of my mind, I just thought, I used to go to the library so often when I was younger. If my parents were to have picked up this book, seen, oh, Dynamic Diya, there’s a little Indian girl on the cover of this book just like me, Aashna would love this book. And they would have read it, they would have seen those signs.

So I’m hoping that there’s some parents out there, some kids that read the book, and they see, oh, maybe I have dyslexia. Or they can see, wow, dyslexia isn’t bad, let’s not discriminate against those with learning disabilities. So really just raising awareness. And so in 10th grade I published my first book, and now I have two more books, one about ADHD, and one about anxiety. And I’m also a motivational speaker now. So I go to schools and organizations talking about learning disabilities and explaining it to students, parents, adults, all over the place. So truly, it has been a full 180. I started off almost thinking that I wouldn’t be successful in my future. And now I know that I can be successful. And I think that’s really important to put out there for kids who have just been diagnosed.

Lauren Clouser, Host

Absolutely. It’s amazing how you were able to take your own personal story of starting from this place that was really sort of pessimistic, really a lot of anxiety about it, and through helping others it sounds like you were able to come to terms with it, which is really amazing. So we touched on this a little bit, but how did you decide that learning disabilities was going to be the issue that you were passionate about?

Aashna Shah

You know, I think that because I had seen how much I was changing, and how much my accommodations helped me. And I worked, I have a nonprofit organization called Kindness in a Diverse Society. And so when I worked with these kids who have been abused, abandoned and neglected, they don’t have the same privileges and resources that I do. I’m helping to get them their basic necessities. Who’s helping to advocate for their learning disabilities? They’re trying to get the bare minimum. Who’s helping them with their learning disabilities, if they even have them, who’s testing them? So I think that also helped me realize I’m so blessed that I was able to get accommodations, 1 in 50 schools actually give out accommodations correctly.

And so I did my research, low bracket income areas, they actually either overdiagnose and isolate their kids with learning disabilities, or they’re just completely ignored and they don’t get very good accommodations. And so that’s when I realized that I need to go straight to the source, I need to go to those kids, I need to go to the staff at these organizations and talk to them about learning disabilities, give them the resources, give them my books, they have so many signs and symptoms written in them that they can see in the kids they’re working with. And I’ve also been doing a lot with legislation, making sure that we can increase the budgets for ESC assistance and ways that we can help these kids get the resources that they need, because it’s a really big issue that we have. And I think just being able to see that firsthand has made me even more passionate about the topic.

Lauren Clouser, Host

Absolutely. It’s a real gap that you found, so that’s amazing.

Aashna Shah

Thank you.

Lauren Clouser, Host

So to talk a little bit more about Kindness in a Diverse Society, could you tell us a little bit about how you got how you decided to found that, and how you begin to include learning disabilities in the mission?

Aashna Shah

Absolutely. So in seventh grade, actually, between my sixth and seventh grade summer I had gone to India, and I had actually volunteered at an orphanage there. And I saw the kids in the orphanage that were my age, but in a completely different situation than I was. And so that really hit home with me. I always volunteered with my parents growing up, but I don’t know. Something about that organization really sparked me. So when I came back to America, I knew I wanted to do everything I could to help those kids, you know, starting in America and working my way to India. And so that’s when I decided, it’s my two best friends, that we’re going to open an organization called Kindness in a Diverse Society, it would be completely kids run, kids helping kids. We wanted to help the kids that were our age, but in completely different situations. And so since seventh grade we’ve been able to do drives, we’re able to do fundraisers, we’ve been able to do, we actually have a podcast also. So we’ve been able to do so many things.

And it wasn’t until eighth grade when I got diagnosed with a learning disability, and then in 9th grade and 10th grade when I really started getting passionate about it, and realized that the kids that I’ve been working with with my nonprofit organization are the ones that aren’t getting the learning disabilities. Although I had to fight so hard for mine, no one’s even fighting for theirs. And I think that’s when I realized I need to combine these two, I need to combine my two passions, helping underprivileged children and learning disabilities. And so that’s when I started donating my books to schools all across the state of Florida.

That’s when I started motivationally speaking at organizations like SEDNET, and organizations like Pace for Girls, because these organizations, they have very powerful people. At SEDNET I spoke at their conference with all of the ESC directors in Duval County, Clay County and all these counties across Florida. And I told them, we need to focus more on learning disabilities, I think it’s a really big issue that we’re not focusing on. And so being able to use the platform from Kindness in a Diverse Society, my nonprofit organization, and now as Miss Florida’s Outstanding Teen has been incredible, it has made my voice and my reach so much bigger. With my title, Miss Florida’s Outstanding Teen, I sent my books all across the state of Florida to our local titleholders. And they donated those books in local daycares, local schools, they read it to libraries. And that just raised so much awareness by itself.

We actually called it the awareness project. And I’m so glad I was able to do that and spread the word because a lot of people don’t know signs and symptoms, a lot of people don’t know about these learning disabilities. So being able to combine Kindness in a Diverse Society with learning disabilities was a really big step that I knew we had to take. And I’m so glad that we did because we’ve had so much of a bigger reach.

Lauren Clouser, Host

Absolutely, that sounds like an amazing impact. And so to talk a little bit more about the books that you’ve published, could you go into detail a little bit about what each one has?

Aashna Shah

Yes, absolutely. So my first book that I published was Dynamic Diya, Dyslexia is her Superpower. And so this one, I actually like to think of myself, because it’s my first book, I was, you know, really starting to accept my learning disabilities around this time. And I just feel connected to…I actually sent the illustrator, I used an illustrator in India. And I sent him a picture of my little sister and said, ‘can you make the character look like my little sister?’ So it’s a little Indian girl on the front cover. And so Diya is having a hard time, she doesn’t understand why her numbers are moving and why her notes on her page when she plays piano are running across the page and stuff like that. A lot of kids…I didn’t even realize that wasn’t normal my entire life. I’ve used my L’s to figure out which my left and my right was, and I was like, I think everyone does that. But that’s not true.

So just these things that, you know, it’s my normal, but it’s not everyone’s normal. These things that I saw that were happening to me, but they weren’t happening to my best friend. So stuff like that is what I put into my first book. And then of course, I have the prologue in the beginning to the parents, telling them about what learning disability dyslexia is, and the signs and symptoms and age that they should get their child tested. And so that’s my first book about dyslexia.

My second book is about ADHD. And it’s almost the same talking about my personal experiences that other kids may be having. But at the end, I actually put in some techniques that I realized have helped me with my ADHD, like putting a timer on when I’m doing assignments, and then letting me have a little break, or just completely putting all of my distractions into one box and putting that at the other side of the room. And so stuff that I’ve realized since I had been diagnosed that have helped me throughout my years with my ADHD I wanted to add in, and it’s a little ADHD superhero manual. And of course, there’s the prologue in the beginning. And it talks to the parents about the same things and includes medication and whether it’s the right choice to give your child medication, because ultimately, it is the parents decision because it’s a hard decision, because you don’t know because it’s such a new thing.

And then the last one that I just recently wrote was ‘Brave Brian, Anxiety Gave Him His Superpower.’ And so I like the way that this one is worded. anxiety gave him a superpower. Because I think overcoming your anxiety makes you brave. I always felt brave when I overcame my anxiety, and so I kind of showed that in my book. There’s situations as a kid that I would get really anxious, which wasn’t normal for a kid to get anxious. Like, when my little sister was sleeping. I would always get really anxious because I thought she can’t breathe, she’s not breathing. So I’d always go and check her pulse to make sure she was still breathing. And that’s weird for a 10 year old to be doing that. But it made me really anxious.

And so, you know, I always felt really brave when I overcame my anxiety. So it’s really all about that. And then at the end of that book as well, I put in some techniques to overcome anxiety, and stay strong. And there’s some coloring pages in all my books for the kids that read it. And there’s a little page where they can write what they think their superpowers are, and of course the prologues to all the parents. But those are my first three books, and I’m hoping for many more to come. I really want to cover every single learning disability out there. But I’ve had so much fun with these three so far.

Lauren Clouser, Host

That’s amazing. That sounds like a really comprehensive guide, because it’s so difficult sometimes when you’re young, to explain a learning disability of what it entails and what this means for you. So I think that’s a great way to break it down.

Aashna Shah

Absolutely. And whenever I was writing them, I would always think, because my little sister is 10 years younger than me, how would I explain this to my little sister, because she is so young. And I want these books to really be going to all the kids out there so that they can start off without having any stigma around a learning disability. I think stigmas are taught. So if we were able to break that at the beginning, I think that would be really great. So I always kind of thought about how can I explain this to a kid? How can I explain this to my little sister so that she can understand and be inclusive to those with learning disabilities?

Lauren Clouser, Host

Absolutely. So would you be able to tell us…I don’t know if you can narrow it down to just one, but what’s been your favorite experience while advocating for learning disability awareness?

Aashna Shah

Oh, my goodness, there’s been so many great experiences, truly, for the past few years that I’ve been able to advocate. I have felt so many heartwarming things, and been able to feel like I’ve really been making a difference. But if I were to choose one, I think it would probably be the impact I’ve made in the Indian community. Like I said earlier, the Indian community is a very big taboo. Learning disabilities, they’re not talked about in the Indian community, you show your child like they’re perfect, you don’t show imperfections. So when I was diagnosed with dyslexia, and ADHD, and anxiety, my dad had actually, he had said, ‘let’s just not tell anyone, we’ll keep it on the low.’ My mom was like, ‘no, we need to be upfront about this, there’s probably other kids out there, we need all the help we can get.’ Right?

So I’m glad that my mom did. And I’m glad that I’ve been able to be so open about my learning disabilities, because since I started advocating, I’ve actually gotten three or four kids in my very own Indian community diagnosed. And so I’m so glad that my influence and my books have been able to help those kids, because I know those Indian parents were probably having a very tough time. But I think as people are being more open, as I’m able to be so open about my learning disabilities, it helps them see that it’s helpful to get accommodations in school. I think their parents are probably getting mad at them because they’re getting a bad grade and science like I did. But with those accommodations, that can be fixed.

Accommodations even out the playing field. Extra time has helped me so much, having a reader has helped me so much. And if those kids were able to get that, then I think they can be so successful. And so just being able to hit the Indian community hard, talk about my learning disabilities openly, and be able to get those three, I think four, kids diagnosed, that I knew personally, was just the cherry on top, I never thought that I could make a difference in the Indian community where learning disabilities were such a stigma growing up. So that’s probably my favorite.

Lauren Clouser, Host

So this is a more general question. But what would you say to someone who thinks that they’re too young to make a difference?

Aashna Shah

If I could talk to someone who thinks they’re too young to make a difference, I would tell them I was only in seventh grade when I started my nonprofit organization. I was aiming to help the kids in India but I was starting in America. I never knew that I would be able to help kids globally, with an international book deal and a global dance competition. I never thought any of that was possible. But you know, you have to start small. Volunteerism has no age, start as a volunteer, you can grow to make your organization. I think just starting as a volunteer and seeing where passion lies, is really important. My best friend, she absolutely loves puppies. So she works at animal shelters all the time. And I know she’s going to do something really big with that. I know she’s going to make such a big difference for those animals. So just starting volunteering at different places and finding where your passion is and just growing with your passion as you grow up, I think that is how you know you’re making a difference just by starting to volunteer. That’s where you start.

Lauren Clouser, Host

That’s great advice. So what message would you like everybody to know about learning disabilities? I know we talked a lot about stigma, is there anything that you really want people to take home?

Aashna Shah

I think something that people should take home is that we need to stop seeing learning disabilities as a disability, I think we need to start seeing them as a superpower, which is why I made all my characters in my books superheroes. Because a learning disability, like for example, dyslexia, which is what I have, if I am truly passionate about something, I can hone in on that passion and become so successful with it. And I think that’s why I’ve been able to advocate and help so many kids with learning disabilities, because I’m so passionate about it. And I think that being able to use your learning disability to your advantage is so important, because that’s how you create a superpower.

That’s why I start off when I talk with kids with ‘what do you think your superpower is?’ Because it’s so important to put a positive connotation on to the word, or on to learning disabilities, whether it’s dyslexia, or ADHD, or anxiety, because I think that’s how we’re going to start breaking stigmas, breaking barriers at a younger age, and as they grow up thinking in a positive light about learning disabilities instead of a negative light. And so that’s something I really want people to take home is that learning disabilities are not a negative thing. They are a superpower. And there’s something to be positive about and looked at positively because you can be so successful with learning disability.

Lauren Clouser, Host

So what are some of your plans for the future?

Aashna Shah

Oh my goodness, so many plans. As I was saying, I’m a junior in high school right now. So college applications are starting. I’m a dual enrolled and AP student, so I’m really trying to become a pediatric dental surgeon in my future. So that’s why I’m doing everything I can right now in high school to make sure that I can achieve that goal. And you know, when I do become a pediatric dental surgeon, I hope to have a day or a week in a month that I can just do pro bono cases, and create smiles for kids who might not be able to afford their smiles. And so that’s a really big goal of mine for the future. I also hope to finish my book series and cover every single learning disability out there and create the superheroes and the superpowers. But that’s what I have in my future, hopefully, and what I’m looking forward to.

Lauren Clouser, Host

I’m sure you’re going to excel and we’ll definitely be looking for those books as well. Is there anything else that I didn’t ask that you maybe wanted to share?

Aashna Shah

I think something that I would like to share with the audience is that you can do anything you put your mind to. And I think that’s a really important thing, almost as an affirmation in your life. Because I never thought that I could publish a book, I never thought that I could be the first Indian American Miss Florida’s Outstanding Teen, I never thought that I could be successful with a learning disability. But all these things I’ve put my mind to it and I’ve been able to achieve them. I am now Miss Florida’s Outstanding Teen, the first Indian American one, and open about my learning disabilities. With my learning disabilities I am taking a very rigorous AP and dual enrolled course load right now. And I think when you think learning disabilities, you don’t think AP and dual enrolled pediatric dental surgeon in their future, but because I’m putting my mind to it, I know I can achieve it. And I know that I am trying to be living proof of that for you. So if you’re listening to this right now, just know Aashna is here showing you that you can do anything you put your mind to, and it’s time for you to show someone else.

Lauren Clouser, Host

That’s amazing. Well, Aashna, how can people learn a little bit more about you? Where can they find your books?

Aashna Shah

You can find my books on Amazon if you go to shahaashna.com There’s also my books on there. So they are on Amazon, they’re on my website, and then also my Instagram, which is @missaashnashah. And so that’s where you can find me and keep up with my journey and buy my books.

Lauren Clouser, Host

We’ll all be rooting for you, and Aashna thank you so much for the impact that you’ve made in Florida.

Aashna Shah

Of course, thank you so much for having me. I’m so glad I could speak with you about learning disabilities and I hope everyone out there has a great and fabulous day.

Lauren Clouser, Host

Thank you for listening to The LDA Podcast. To learn more about LDA and to get valuable resources and support, visit ldaamerica.org

Dyslexia, Literacy, & Race

Heard on The LDA Podcast

In this episode, LDA President Monica McHale-Small sits with special educator Dr. Lauren McClenney-Rosenstein to discuss the misidentification of learning disabilities in students of color, the intersection of environmental justice and disproportionality, the challenges that low income communities and communities of color face in getting the right support in education, and more.

Read the Transcript

Lauren Clouser

Welcome to the LDA podcast, a series by the Learning Disabilities Association of America. Our podcast is dedicated to exploring topics of interest to educators, individuals with learning disabilities, parents, and professionals to work towards our goal of creating a more equitable world.

Dr. Monica McHale-Small, (Host)

Hi, everyone. I’m Monica McHale Small and I am currently the President of the Learning Disabilities Association of America, and I am here today with Dr. Lauren McClenny-Rosenstein of Think Dyslexia.

Dr. Lauren McClenny-Rosenstein

Hi. I’m really excited to be here and to have this really rich discussion about dyslexia, race and literacy. I’ve been in education for ten years. I am a special educator and I’ve been in private schools, I’ve been in public schools. I’ve worked at a nonprofit organization, and I’m currently a learning specialist at a private Quaker school in Baltimore. I’ve also taught at the elementary level and I have taught at the middle school level. And I started my career at a private dyslexic school, so that was kind of the start of where this love came from. And I’m also Orton Gillingham trained and certified through the Academy at the Associate level.

Dr. Monica McHale-Small

Lots of rich experiences to draw from. And Lauren, you and I connected after I saw a tweet that you shared which spoke to the idea of Black students, and especially Black male students often being misidentified as emotionally disturbed or intellectually disabled when in fact, they had dyslexia. And I’m very interested in what led you to tweet that.

Dr. Lauren McClenny-Rosenstein

Sure. So just so everyone knows what that tweet was, I posted this tweet on Christmas Eve, actually, and I stated, “Why is it when Black males qualify for special education, they qualify under intellectual or emotional disability? Oftentimes they’re misunderstood and misdiagnosed, and this could be the root cause of dyslexia.” So what inspired me to post this was I actually originally posted this on a whiteboard back in June on my Instagram page. And this was really based around the unrest of what was going on in our country with George Floyd and the Black Lives Matter movement. And I just thought as a special educator myself, why is that? Why is this the case? In July, I actually did a presentation with Dyslexia Institute UK, and the topic was actually the under-representation of Black students in American schools. And so I delved into what that looked like and just kind of the disparities in this country and what this country was based on and built on. So I felt even more inspired to repost it on Twitter, when you found it in December, because I had just done an interview with Hilderbrand Pelzer III back in December on incarcerated youth and literacy.

And if you aren’t familiar with his work, he’s great. He used to be a principal in a juvenile system, I think in Philadelphia. I’m not quite sure where exactly, but his work is heavily steeped in literacy and incarcerated youth. So I felt it was time to bring that conversation to the forefront again. And hopefully we can change that narrative and we can have that systemic change.

Dr. Monica McHale-Small

Recently, I shared with you two different papers. One was LDA’s recent core principle on disproportionality and identification, and the other was the testimony that I gave to the Pennsylvania Advisory Committee to the Human Rights Commission around the issue of the school to prison pipeline. I’m wondering what, if anything, from those papers resonated with you?

Dr. Lauren McClenny-Rosenstein

Well, I think the biggest thing that I know you touched on was relationships, the determining factor of the connections to the school and school success and student success. So I found this to be a really big area for me personally when I was co-teaching with teachers and then also just coaching teachers into how you can build those relationships with those students that I think some teachers might find that are more troubled or harder to handle based on their behavior. And I know that class size and curriculum shifts and changes in whatever the direction the school district is kind of going and it can make that difficult for public school teachers to say, ‘Well, I don’t have time to have relationships with 120 students,’ but really that is the determining factor to unlocking student potential, and that connection of building relationships as adults and really think about themselves in the workplace. I feel like you thrive best when you know that someone actually is taking an interest in who you are as a person, what your likes are, what your interests are. So it’s the same thing in the classroom. I feel like when you have that relationship building aspect of that.

And also I know there was a point in the piece that you sent me about student resource officers or the SROs, and how they’re essentially trained to do what they’re told, which is when there’s some sort of criminal behavior, an action is then taken, which could be maybe the student is removed from the school or they’re arrested or something that then puts that student, which could be more likely a student of color, at risk of criminal behavior. And I think that when you think about students of color and their success rate and how schools handle the disciplinary actions, I think that kind of changes the narrative of if kids are constantly seeing a reflection of themselves being pulled out of the classrooms or they’re not really seeing their counterparts being treated the same way, it kind of puts in their head like, oh, well, I’m supposed to end up in prison or I’m supposed to just goof off in class, and then I can go hang out in the front office. So I think those points of relationship building and the SRO officers and their actions and how that can lead to criminal behavior really stuck out to me the most.

And it also just kind of made me think about some of my personal experiences in public school. And when I did see those students, they were always the students of color, right?

Dr. Monica McHale-Small

Yeah. And I can speak to my own experiences. I spent 27 years in public education. And what I saw so often was that some of those students who end up getting really heavily subjected to exclusionary discipline, most often the students of color and Black males, it almost seemed as if for them it was to save face rather than admit that they were really struggling to read and to perform what was expected to them in the classroom, they acted out so that they wouldn’t look like they were dumb or incapable. And I think people hyper focused on their behaviors and never really dug deep enough to get to those root causes.

Dr. Lauren McClenny-Rosenstein

Yeah, I would agree with that. And to just comment on what you just said, I think oftentimes teachers are overworked and, as we know, underpaid. And so when they see students that are flipping a desk or passing notes or doing things when it could be a sign of this is happening whenever we’re doing literature studies, or this is happening whenever we’re doing circle time, or whatever the case is, I’m sure it’s from K-12 that you see these behaviors, but I think teachers aren’t paying attention to that. And I know we’ll touch on this later, but they don’t know what they don’t know. So they don’t know what they’re identifying to know oh, this could be a literacy issue rather than a behavior issue, right?

Dr. Monica McHale-Small

Absolutely. So let’s talk a little bit more about dyslexia. And do you think dyslexia is in some ways distinct from other learning disabilities in terms of misidentification or under-identification, especially in students of color, and if so, how?

Dr. Lauren McClenny-Rosenstein

Sure. Well, I think there are two factors that are an issue. So the lack of teachers of color in the public school system and the lack of knowledge about dyslexia. So if you take a step back and look at data, obviously, we know data tells stories. So in the National Center for Education Statistics, the breakdown of the percentage of teachers in the public and secondary schools in the years 1999 to 2000 and 2017 and 2018. So those are the two different data points. So in the 1999-2000 data there were 84% teachers that were white and 8% that were Black. So if you fast forward to the 2017 to 2018 school year, 79% teachers were white and 7% were Black. So there’s a discrepancy right there where most of the teachers are white, probably white males, and the rate of Black teachers went down by 1%. So that I think right there is problematic within itself because I think teachers need to kind of look at their own implicit biases and where they come from, where they’re teaching, how they’re connecting with the BIPOC students. And then I also think most public school teachers, and let’s just say common USA, this could be anywhere in this country really, can’t tell you much about dyslexia in general.

And so elementary school teachers might know a little bit more than secondary colleagues, but not by much. So if they know more, it’s probably because their school district is educating and training them, their in-service teachers on dyslexia or some sort of multisensory teaching to identify these students for special ed. But if you really take a look at the confluence of race and dyslexia, it’s almost nonexistent in research. And when I was looking at race and dyslexia, probably around the time of when I originally posted a tweet in June, it was on Instagram, I was really looking for research. Like, what are the numbers? How many students of color do have dyslexia? How are these students being serviced? And there really was not a lot of data there. So I think it’s easy to believe that dyslexia is really only prevalent in white people because in the American school systems, I feel like the white students are treated and kind of serviced differently than the BIPOC students.

Dr. Monica McHale-Small

Yeah. And as I shared with you in another conversation, I started my career as a school psychologist, and I have found that it’s almost like at different times there are different disabilities that are popular or maybe not popular but are acceptable right now. Dyslexia is a socially acceptable disability. And I think in a way that has almost made it worse for students of color because it’s an entitlement, and it’s an entitlement that a lot of our more affluent white parents are very aware of. And it’s the disability that they’re okay with their child having, probably because so many really famous and accomplished people have come out to say that they’re dyslexic. And I wonder, too, if maybe that’s even playing into the under-identification because we don’t elevate as many famous and accomplished people of color in our society as we do white people. So maybe that is kind of playing into why it is that we’re seeing this clear under-identification.

Dr. Lauren McClenny-Rosenstein

I would definitely agree with that for sure, because in my own journey, I always like to make sure that people that are listening to my work know I’m not an adult with dyslexia. I’m just very passionate because I know I struggled in school and I was later diagnosed with ADHD and anxiety in my senior year of college. And so I think that was mostly why I went into special ed. And so I feel like I really didn’t see a lot of representation for me as a student of color just in general, let alone adults or famous people of color that have ADHD. So I think as I’ve been exploring, who are these people of color that do have dyslexia? And I found a few, not a lot. And I feel like they’re names that people just don’t know. So I think that does play into that underrepresentation for sure.

Dr. Monica McHale-Small

How about other learning disabilities? Do you have any thoughts about learning disabilities other than dyslexia and how that may intersect with race, things like dyscalculia and dysgraphia and oral and written language disorders?

Dr. Lauren McClenny-Rosenstein

You know, I feel like dysgraphia and dyscalculia, they’re not new, but I feel like they are new in the special education field of like, no one really sees that on an IEP. Actually, let me take that back. In the school district where I worked, those were not labels that were on IEP. We saw specific learning disability. And I always joke that some of my co-teachers or other teachers on the team would be like, what’s so specific about it? How can I help the student if I don’t know what the specificity is? I think it connects a lot to dyslexia in that social justice piece, because I feel, speaking from my own experience as a woman of color, I was not good at math. And I feel like there is some sort of subliminal message for students of color, at least African American students. I can’t speak for African students, but they’re not good at math. That’s more of the Asian realm. That’s where some of the African descent Nigerians, like, they’re good at math, they’re good at those kinds of things. So I feel like there is this stigma for kids of color where it’s like, well, I’m just not good.

I can’t multiply. I’m going to just use my fingers, you know, things that I feel like I was guilty of as well. And then, same with dysgraphia. I think that learning how to write and being articulate in what you’re saying and clear on paper can be difficult because I think if you take some places, like urban areas where there’s slang and there’s a different way of communicating that some teachers…and again, if we look back at the percentage of teachers in American schools, they’re white, they may not understand that. I guess you consider that African American slang. Some of the broken English and things that are said spoken at home, it’s different at school. So I think it could be perceived that maybe the student can’t write well because of what’s happening at school, or maybe the student isn’t capable because they’re not getting the support of what’s happening at home. I think I said at school the first time I meant home.

Dr. Monica McHale-Small

Right.

Dr. Lauren McClenny-Rosenstein

So, yeah, I definitely think there is a race component to that, for sure.

Dr. Monica McHale-Small

Yes. And in my own experience, when I did work in public schools, and then now I’m an adjunct at Temple University, and we have a clinic that services a lot of families in a pretty high poverty urban area that surrounds the University. And we’re often encountering kids who have gotten into upper elementary, even into high school, who have clear learning disabilities. But it’s almost as if it’s like, oh, well, you’re poor, you’re Black. And we didn’t really think about that. That’s kind of where we expect you to be because you’re poor and you’re Black, which is very heartbreaking because these kids are not getting the intervention that if they were just classified and serviced early on, that would be a way to get themselves out of the poverty situations that they find themselves in. Right?

Dr. Lauren McClenny-Rosenstein

Right.

Dr. Monica McHale-Small

Yeah, we kind of dismiss it and just. Well, I think we have a very high tolerance for accepting low achievement amongst poor students, no matter what color they are. And I don’t think that’s okay. So we’re having this conversation on the day that we honor the legacy of Dr. Martin Luther King, who said in one of his speeches, the field of education has been a battleground in the freedom struggle. And then just last week, it was announced that Rick Snyder, the former governor of Michigan, was criminally charged in connection with the Flint water crisis. Parents in that community had to file legal action to get their children evaluated for special education. So in this week, where social justice is really very much at the forefront of the news, and I’m thinking, what are your thoughts on if or how environmental justice and disproportionality in special education intersect?

Dr. Lauren McClenny-Rosenstein

So I think environmental justice is huge and the disproportionality do intersect. Typically, when I think of environmental circumstances and families of color, I usually think of urban populations which impact quality of living in ways that don’t necessarily impact white families with cultural capital. And so I was looking at Flint’s makeup of their city. The 2010 census had said 56% African American, 37% white. And I’m not really familiar with the quality of living in Flint, but I can only imagine that the parents are taking legal action to file for legal action for their children to get evaluated for the school system, for potential lead poisoning in the water. That really goes to show just how dire their circumstances are. I don’t want to have a sweeping generalization comment, but I do want to say I feel like you don’t typically see these cases happening in white rural areas in America. Maybe they happen, but it’s different. And I just think about how we have a house in West Virginia, and the school district is really far away from our cabin, and that’s a vacation home, but it’s pretty rural out there. And so I wonder what their quality of living is like as well.

But to kind of bring it back to Flint, I think in terms of filing for the legal actions, it’s just one step in the process. So for me, I ask questions like, what type of lawyers are the Flint residents going to get? Are they going to be top notch lawyers? Are they just going to be those pro bono case lawyers where they only have 15 minutes per case type thing? Will these parents win the case? And if the families do get what they’re asking for special education testing and that nature, are these kids really receiving the best education possible? And, of course, that’s all subjective. What is the free, appropriate public education? That varies. So I think in general, the process is good, but in some ways, I think it could be discouraging to kind of get stuck in that system. But I’m not saying these families shouldn’t fight because they should. But this is a continuous issue that just keeps unfolding, right?

Dr. Monica McHale-Small

Yeah. And I completely agree that evaluation is just the first step. And if you’re evaluated and identified and you still receive substandard education, then it’s not necessarily going to solve the problem. To me, though, it just speaks to the whole idea that the entire world knew that these children were poisoned with lead, and yet they still had to fight for their rights, their legal rights to a free and appropriate public education. So it was disheartening to me. And I do fear sometimes that when we are solely focused on ideas like over-identification and too many kids of color are over-identified for special ed. And yet we know that children of color are more likely than their white counterparts to live in highly toxic environments, lead and air pollution, and other things that impact brain development. We’re kind of trying to solve the problem by saying, oh, we just won’t evaluate so many kids for special ed when we haven’t really dug down to what are the root causes of why these children may be underachieving or may have a higher rate of disability. Right? Sweeping it under the rug.

Dr. Lauren McClenny-Rosenstein

No, I agree with that completely.

Dr. Monica McHale-Small

When I read the article that you had shared with me, a lot of ideas resonated. But one quote that I pulled out, you said, “Why should many Black communities suffer and not have the same access and opportunities that significant numbers of white families can leverage?” Let’s circle back to dyslexia and talk about how that idea connects to dyslexia and students of color and what resources they may not be able to leverage.

Dr. Lauren McClenny-Rosenstein

Sure. So when I wrote this, I was thinking a lot about my first job in my private dyslexic school in the suburbs of Atlanta. So this was ten years ago, and I believe I was the first Black teacher hired. And I noticed that there weren’t a lot of Black students there my first year. Now, in the second, third year, there were more students of color. In my first year, I felt like I kind of stood out and I didn’t feel like I was being discriminated against. But I noticed that there wasn’t a lot of me there. And so it really made me think about the Atlanta Public Schools and their demographics. And of course, I just like to know the percentages. So 54% Black people lived in Atlanta. This is 2010 data and 38%. I’m sure it’s the same, if not a little bit higher for Blacks now in 2021. But I’m sure that there are a lot of students of color in the Atlanta Public Schools. And so when I think about the school where I work. I don’t think they were really scholarships put in place. So if you are familiar with Atlanta, Fulton County is pretty large and it used to be a long time ago, we divided into three different counties, but they went bankrupt.

And so it turned into this one long county. But you get to a place where Northern Fulton County is mostly white. And that’s where there were a lot of the private schools, private dyslexic schools, and then south of Fulton County, depending on where you were, you kind of had to be careful with, ‘oh, I’m going into this part of town’ or ‘this is where this school is.’ And so I really couldn’t help but think about the private school tuition, the barriers that it presents to probably some of those South Fulton families that maybe they weren’t as educated to know about dyslexia or why their child was reading two or three grade levels below where they should be to know, like, ‘Hey, I really want to send my child to a school where they can get what they need, they can get identified, they can have those supports.’ And so it really made me think about why is it that most of these private schools have students that are mostly white? And I think a lot of it is because of the cultural capital, because of the knowledge, because of the education to know, okay, something’s not right. Let’s get my child evaluated.

And as you know, outside evaluation, testing can run up to $3,000 and families just can’t afford it if their insurance isn’t covering it. So the other thing I did want to say was there was an article I read from KQED News, which is, I think, a radio station based out of San Francisco. And they put out an article, I think this article was from a few months ago, but the journalist interviewed Larry P, which was a lawsuit court case in 1979, and it was based on the discrimination of an IQ test against Black students. And so if the student tested below whatever their idea of an IQ test was, they were then deemed mentally retarded and then they were then put in special education. And so this, the real life Larry P., Darrell Lester, he ended up living his life in and out of jobs, on drugs, really struggled. And he’s now 62 years old. And it’s not because he was dyslexic, but the bar was set low for him. I think his mom didn’t know what she didn’t know and she thought the school was doing the best for him to provide the best education.

And once he was in the special education classes and thankfully, we don’t have this everywhere now, but he was put in those life skills classes. So his expectation of being successful in school was very low. It was assumed that he was not smart enough. So then he just had to learn how to fold clothes or whatever those life skills classes were. So it really makes me think this man is 62 years old and he’s dyslexic and still can’t read and write very well, and he grew up in not having an abundant amount of money and resources. This is still happening today, and there’s still that discrimination piece or that divide where you have these exclusive private schools, which I’m all for it because I’ve worked in three private schools. But where is the equal opportunity for those students to get the same kind of services that the white students are receiving?

Dr. Monica McHale-Small

Right. And kids shouldn’t have to. I mean, the law says a free and appropriate public education for all students with disabilities. And recent Supreme Court cases have really affirmed that the progress the kids make needs to be meaningful and consistent with what we would expect based on their disability. But maybe that’s the whole issue, maybe because of the color of some students. Again, our expectations are just set too low, and therefore, we don’t really make sure we have the right diagnostic category and we don’t really make sure that those kids have the highest quality evidence based instruction. Maybe a final idea here is you also talk about reading and writing as civil rights, and that everyone and that kind of goes along with what I was saying. Right. You shouldn’t have to have the money to get yourself into a private LD or dyslexia school in order to get the education that you need and that everyone should receive the support that they need to be successful. LDA, as an organization wholeheartedly supports that idea of reading as a civil right, because most, not all, but most students with learning disabilities struggle to read. In your opinion, how would things change for students with dyslexia if policymakers truly embrace this idea?

Dr. Lauren McClenny-Rosenstein

I mean, I think the answer is simple. Like they would finally get what they need, but it’s not that simple. So if I think about policymakers and then you think about governors and mayors, I know the governor of California Gavin Newsome, he’s dyslexic, and I think he’s pushing out some good policies in the state of California to support kids because it’s personal to him. And I think the biggest thing I’m realizing just in my own research and just in public versus private school, if it’s not personal, people don’t really care. And I know that sounds awful, but I think it’s true. I know you’ve been in education longer than me, but in the ten years that I’ve been in this field, I’m like, how do we get people to see that this is something, first of all, that needs to change at the University level? Preservice teachers need to know how to identify and need to understand how to support these students. But then when you take it, you know, you scale it back to the policy level who is out there where they can say, you know, what this impacted me personally, this was something that was difficult for me.

Dr. Lauren McClenny-Rosenstein

We have to change the narrative for these kids. And I think it has to come from the governors and the mayors and the people that actually made it to the top per se, but probably struggled their way through. So I think until there is a child or an actual adult or a grandchild or someone out there where they’re seeing the struggle and they’re seeing how difficult it is, that’s when it’ll really hopefully change the narrative. But I’m hoping that there is some sort of change or deep understanding in the BIPOC community. So I don’t know if there has to be a mayor or governor or someone of power that’s of color to say this has impacted me and my community and we have to make a difference, but we have to make a difference at the policy level. So I think that’s my answer. It’s got to be personal to somebody.

Dr. Monica McHale-Small

Yeah, you’re probably right. I think that there’s personal stories. Having been involved in passing some legislation in Pennsylvania, it really was the personal stories. And when the stories that the parents told connected with the stories of the policymakers and the experiences that’s when we saw movement happen. I’m wondering, though, going back, you mentioned policymakers who are BIPOC and how we have to connect them to it. I’m wondering if that whole idea of over identification and too many kids being in dead end special education programs, do you think that has caused any resistance in that community to be open to the idea that dyslexia may be as prevalent or maybe even more prevalent in certain communities of color as in the white community? Do you think there’s any uneasiness with that concept?

Dr. Lauren McClenny-Rosenstein

Absolutely. I think that there is a huge stigma. I tutored a student of color a few years back, and I think within this student’s culture and this student was not dyslexic, they had a physical disability that impacted their…well it was physical and it was cognitive, but it was the kind of thing where the family, you could tell they were uncomfortable with the idea of special education, but they realized that my child needs these supports. But culturally it was like, no, if there was a way that they couldn’t see this, then we’re not really going to address it. And I think that that can be the over -identification. I do think there is this not stigma but this perception, this misconception that you’ll get teachers that will say to some Black families or some poor families, well, you’re just not reading enough at home. That’s why your child is not able to read. And it’s like, how do you know what’s really happening? And so I think at least in the Black community. I think I can speak on that. It’s like, I think we get offended by that, then it’s just like, what? We don’t need you’re fine, you’re good.

You’ll grow out of it or we’ll fix the problem or we’ll get a tutor or whatever it is. And I think that definitely plays into it and I also think that a lot of people have been hurt by the system and the system has been put in place to support, but I mean, look at special education history and how long it took for special education rights to kind of come to fruition and even still now, depending on what school district and where you are, there’s still issues yeah.

Dr. Monica McHale-Small

There’s still huge issues. Hence, LDA continues to still exist, right? If everything was hunky Dory, we wouldn’t have a reason to continue.

Lauren Clouser

Thank you for listening to the LDA podcast to learn more about LDA and to get valuable resources and support visit ldamerica.org.

Advocacy in Special Education: A Talk With an IEP Coach

Heard on The LDA Podcast

“I had an IEP through high school and I really know the power of the special education system…And I feel like I’m living out the purpose of an IEP, which is to prepare you for life after high school.”

Disability advocate, speech-language pathology assistant, and IEP coach Courtney Burnett had an IEP herself growing up, and now she uses her expertise to empower parents to help students get evaluated and supported. Courtney discusses the main barriers to accessing special education, the purpose and goal of an IEP, how parents can have an active role in their child’s education, and much more!

Read the Transcript:

Lauren Clouser (Host)

Welcome to the LDA podcast, a series by The Learning Disabilities Association of America. Our podcast is dedicated to exploring topics of interest to educators, individuals with learning disabilities, parents and professionals to work towards our goal of creating a more equitable world. Hi, everyone. Welcome to the LDA Podcast. I’m here today with Courtney Burnett, she is a certified speech language pathology assistant, IEP coach, disability advocate, and mother. Courtney also presented at our 60th Annual Conference this year in Las Vegas. So Courtney, thank you so much for being here.

Courtney Burnett

Thank you for having me. I really appreciate it.

Lauren Clouser (Host)

We’re so happy to have you. So could you tell us a little bit more about your background?

Courtney Burnett

Yes, actually, I grew up on an IEP. And I do have a learning disability myself. And so that is one of the reasons that led me to the work I do. And like you just mentioned, I am also an SLPA and work as a disabilities advocate. I’ve also helped pass a bill in our state for universal changing tables. So I do a lot of advocacy work, because I’ve really started to understand the power of our voice and sharing our stories. So I’m really excited to be here.

Lauren Clouser (Host)

Absolutely. That’s amazing. We’re so excited to have your advocacy expertise. And we’ll dive into some of that now. You touched on this, but could you share a little bit of your personal experience with navigating through the special education system? You mentioned that you had an IEP yourself.

Courtney Burnett

Yeah, so I am a product of Child Find, you know, my teacher went to my mom and was like, Hey, she’s a hard working student, she seems to grasp the information and then come Friday, she doesn’t seem to have the information anymore. So I’m a little bit concerned. And so that was in second grade. And so I was actually evaluated, and they didn’t separate it so much as I’m learning, like reading comprehension, it was just kind of a general learning disability. But I had that IEP through high school. And I really know the power of the special education system. And I know later we’re going to be talking about the purpose of the IEP. And I feel like I’m living out the purpose of an IEP, which is to prepare you for life after high school, right? And then I went on to have a daughter who has cerebral palsy. And so then I navigated getting her on an IEP in preschool, and going through it from a very personal perspective as a mom. So I really feel like one of the things that sets me apart from other advocates is the fact that I grew up on an IEP, I’ve navigated it as a mom. And I’ve also sat at the IEP table as an SLP. So you really get to see all sides of how this system works. And it changes your perspective.

Lauren Clouser (Host)

A lot of great perspectives,. Have there been a lot of major changes since you’ve had an IEP, versus your daughter’s IEP, of how things are handled?

Courtney Burnett

I think so. One of the things that I think has come a long way is I really feel like I should have had occupational therapy. My mom doesn’t remember anybody bringing that up to her. But if you see my handwriting, you would say, okay, you definitely probably needed occupational therapy. So I think the services with speech, OT, PT, integrated with assistive technology have come a long way. And even assistive technology for my daughter, she’s non-speaking and having an AAC device, and having that integrated to the school system versus where she was in kindergarten. And now she’s 19. It’s significantly different. And there’s a lot of positive changes. And I know sometimes changes move slowly, more slowly than any of us really want. But they do move. And so I have seen a positive movement in special education in those regards too.

Lauren Clouser (Host)

Absolutely. Well, it’s good to know that we’re moving in the right direction, even if it is a little more slowly than we like.

Courtney Burnett

Yeah, I think a big part of that is podcasts and access to networking in a way that my mom never had in the 80s. Like, how are things being delivered in Utah? Or how are they being delivered in Washington? And so I think one of the powers of social media and other forms of learning is that parents are able to better get their hands on information and educate themselves and empower themselves. And I think that’s also helping move the needle too. And that’s just stuff we didn’t have, you know, before technology moved along this way.

Lauren Clouser (Host)

Absolutely. So what are some of the most common obstacles to students accessing special education?

Courtney Burnett

I think there’s a couple of key obstacles. One is it’s a process to get qualified for special education. And if the teachers and therapists and the people in charge of those procedures maybe haven’t had extensive training, what I tell parents is you’d be shocked at how little training they get. And teachers will tell you this, like I went through a whole program, we never learned how to write an IEP or we never wrote an IEP and IEP PRO and implemented it. And so sometimes what I see parents facing is misinformation. So the people feel they’re informed, and they are sharing that information.

So the biggest barrier I see is actually getting the evaluation, I see a lot of stalling or ‘we want more data.’ But the paperwork is not done quite right. And the paperwork being done gives the parents their timeline. And then when the timelines are not followed, it gives the parents the right to contest that and say, ‘hey, this isn’t done in the timeline.’ And I think for parents, there’s a misconception of realizing that it’s not quick, it’s 60 to 90 days, from the time that you sign that you will allow them to evaluate. And sometimes you have a couple of meetings before the team decides to evaluate.

So I think parents understanding…I have a lot of parents that hire me for getting started with special education. And I think that’s really smart. Because there’s a lot of steps in the initial process of getting qualified. And then we have 13 ways you can qualify. And so it’s really overwhelming. So I think getting started with it and then secondly, is having the staff support to implement it and writing it at that time, the IEP, making sure we’re really going around the room and saying, ‘what support does speech therapy need to really implement this goal correctly or accurately or have the bandwidth to do it?’ So sometimes we get really great IEPs, but we didn’t talk about implementation, and then it just stays a really well-written IEP, but it doesn’t get implemented. And that’s really frustrating for families.

Lauren Clouser (Host)

When parents are navigating the special education system, what are some key rights that they should keep in mind? I know you mentioned some delays, I’m sure we’ll talk about some more laws regarding IEP s a little bit later. But what are some of the key rights that parents should know?

Courtney Burnett

Well, one of the biggest ones is you are an equal member of the IEP team. And oftentimes it doesn’t feel like that when you’re sitting at a table. Oftentimes, when my daughter was little, she had a lot of specialists. So I was sitting there with, like, 12 other people that you are an equal member, and you have the right to understand the different placement options, to tour them, to have a draft copy. It’s not a requirement but it’s really important you get a draft copy of the IEP, because I tell schools, how can my parent be an equal member if they didn’t get to see the IEP like the rest of the team prior to this meeting, then they’re kind of behind the ball there.

And then you have your safeguards, your parent procedures, and it’s a big booklet that they offer you at every IEP meeting. I know, it’s really boring, but sit down and take a peek at that, because that actually outlines all your rights, and how you can escalate things or how you can disagree. And one thing I did way too late for my daughter is understand that I could disagree. Because I felt like I’m sitting at a table with occupational therapists who went to school for all these years. Some of them are doctors, and I’m going to disagree with them. So I never really disagreed until later on. And when I realized, wait a minute, things aren’t quite getting done the way that I think they should for my daughter, however, they’re feeling confident at the IEP table.

So I know a lot of parents have fear in disagreeing or advocating. But you do want to enact your voice because you do have the power to give a parent input statement. And that’s another thing, some people don’t call it that. So this is how I describe it to my families. You’re sitting at the IEP table and they say: what goals do you want your child to reach this next year? And you’re kind of like, I have so many goals. I don’t know how to answer this, because I know my child has a learning disability or learning delay. And so how do I answer what I want them to do in a year? And so prepare that ahead of time, because you can really use that parent input to shape the IEP. They’re supposed to consider it, and then show how they address your parent concerns in the IEP. And I didn’t know that until my daughter was in middle school.

So that’s another really important one is to write out your statement, write out your thoughts prior to the meeting, because you’ll forget. You think you won’t, but then you get in there and everything’s fast paced and everybody’s trying to get the stuff done quickly, and you’re like, hi, I forgot to bring up this. So having that written notes and agenda for yourself talking points is so helpful for families.

Lauren Clouser (Host)

Absolutely. Well, that’s something we’ve heard a lot too. That parents are surrounded by all these experts in IEP meetings and they can feel intimidated. But it’s so important to remember that you are your child’s first advocate and you know them best. So yeah, parent input is key.

Courtney Burnett

Yeah, and the parent is one of the only people that has access to all the medical information and how they’re doing at home, in school. So you really have a unique perspective on your child that obviously no one else has. And one of the things that just popped into my head was time limits. So I often see on parent notices, like 30 minutes or an hour, and they’ll often also say, well, we only had an hour, so we need to wrap this up. You have the right to say, okay, well we’re not done and I don’t want to be rushed. There’s no time limit on…I mean, there’s legal timelines.

So when they’re supposed to write the IEP, and have it locked in everything, but what I’ve seen presented is like that this meeting is 30 minutes and that’s all it can be. And the school can’t do that. I say at least an hour. And sometimes I’ll even write back and be like, I see that 30 minutes is only documented on here, I would like it to be an hour. Because then what ends up happening too, is therapists and teachers think the meeting is a half hour, they might book another meeting, and then they have to leave the meeting. And so then you end up having your IEP meeting with an incomplete team.

And so do not feel rushed to sign and to be done, and say we need to reschedule and have an additional meeting so we can finish and go through the goals. Because that’s another thing that sometimes happens is that pressure to get it done in this small timeframe.

Lauren Clouser (Host) 11:31

Absolutely, that’s a great point. So can we touch on what the purpose of an IEP plan is?

Courtney Burnett 11:38

Yeah, the biggest purpose of it is to prepare your child for life after high school for independent living, to employment and further education. So when I’m looking at an IEP and my kid is in kindergarten or first grade, I really encourage parents to start young, and think about what are the foundational skills that I want my child to have so that they can have their best life after high school. Because when I was looking at reading interventions, I’m so passionate about that, because reading is the foundation of every subject. So getting your child to where they have the best reading interventions, and trying to get the best you can is really important because every subject, especially after third grade, it really picks up, math problems and reading these things in science books and in history. And so that is a big deal.

So really thinking about…and sometimes it’s really hard because we have so much on our plate, and we’re just trying to survive today, that looking ahead is almost too much for some of us parents. But I really encourage them to do that. Because we want to be looking at what would employment look like? What would my child need to have to be able to have meaningful employment? If my child wants to go to college what would they need to be able to access that education and potentially get a degree? So I really encourage parents to be looking at that because IEPs really build off each other.

I always tell parents, it’s really hard to get it on. And once it’s off, it’s really hard to get it back on, whatever you took off. Like if you give up 30 minutes of therapy, it’s really hard to get it back. And so making your IEP really great from the beginning. If you want inclusion, if you want these things, get in there, the sooner the better, because then it’s going to build off of it for your child’s future. And having their independence and self-advocacy is really important too. That’s one thing that my resource teacher did for me in elementary school was they helped me understand my learning disability, helped me understand how my brain works and how I learned, and how to advocate with my gen ed teachers. If they were saying I couldn’t go to the quiet testing area, she gave me the words that I could use to tell my gen ed teacher actually I can go there.

And so teaching your kid…I hid my disability for so long because I wanted to fit in. If nobody noticed me in school that would be for the better. I just never wanted to be different. And as I got older, I started realizing, why am I hiding this? There’s nothing to be ashamed of. This is how my brain works. This is how I learn. And so I started sharing about my experience growing up on IEPs and having a learning disability, and I think it really helped parents and students realize that how I feel today isn’t how I’m going to feel forever. And I did learn to read and now I actually love to read as an adult, and I read all these books. And if you could have told me that when I was younger, I’d be like: you’re kidding. Because I hated reading. If I’d never see a book again after I left high school I would have been fine with that. But then as I started reading for enjoyment, I became a better reader.

So it all comes together. So really having your eye on the future and looking for that really is the purpose of it. And sometimes we get tangled up in the weeds of writing this goal or this accommodation, and we forget to keep our eye on the future for that child.

Lauren Clouser (Host)

That’s great advice. So could you walk us through the steps of getting an IEP? I know, you said that you help a lot of parents at the start, at the beginning, because it’s such an intimidating process. Could you sort of walk us through some of that?

Courtney Burnett

Yeah, so there’s a couple of different pathways. So if your child is in an early intervention program and they’ve already been identified with a disability, usually your early intervention will coordinate with your local school district, your home school, and help them get kind of automatically sort of qualified for preschool interventions if they have enough information that the school can use. So for my daughter, that’s what happened, she was already identified. So my support coordinator for early intervention coordinated with the school district, shared the information, and Hannah got into the preschool program.

Another way is your child is at school, and your teacher is noticing that your child is struggling, like my teacher did with me. They’ll take data, they’ll try some interventions, and then they’ll identify them as a possible student needing special education services. And that will trigger a meeting. So your child cannot be evaluated without parent permission. So the parent has to be brought into the process, agree to the evaluation, then they’ll evaluate. And they have that timeline to complete it. And then you’ll have a multiple disciplinary…that’s a big word….meeting or basically like the OT, the speech therapist, the teacher, anybody who did an evaluation comes together, they share their findings, and then they determine: can we qualify this child under the one of the 13 areas that it’s outlined under the federal law? And then usually, if they can, they’ll recommend an IEP and start that process.

They have 30 days from the time that you identify, but again, the parent has to agree. So they agree to the evaluation and then they have to agree they understand they’re going to have an IEP, and that they might be pulled from some of the gen ed classes. And they need to make sure the parent understands the next part of it. So as a parent, you’re involved every step of the way. And you can say, okay, they’ve identified my child as a special education student, I want to think about that, or whatever. And then you could sign for them to receive services. If they can’t qualify them for an IEP, sometimes they’ll recommend a 504 so that you can still have some accommodations and different things. That’s really when they identify them as not needing, like indirect instruction, or specialized curriculum, sometimes they’ll recommend a 504.

And then the other options are for a parent to say, oh, my goodness, we’re in first grade, I feel like my child is not grasping the concepts. They’re coming home really emotional. They don’t want to go to school. They’re saying they hate it. And dig into that, why do they hate it? Is it a problem with a friend? Look for these things. And then start that, I recommend a paper trail. I’m a huge advocate of that, not only because it creates timelines and proof of timelines, but the other thing is, we are all human. And so if somebody says to me, you know, I’ll even tell my speech clients, if one of the parents wants me to do something, I said, if you don’t hear from me by 3pm, then you send me an email. And it wasn’t because I didn’t want to do or follow through on what I said, it’s just life happens, and the next emergency comes up. So emailing them and starting that paper trail of my child struggling, I feel like they’re not being able to read, they’re not grasping the concepts. They’re having difficulty focusing, sometimes we see that there might be some behaviors, behaviors are a sign of something, they are communication of something.

And so starting that paper trail, and then you can actually put it into writing, I would like to have my child evaluated. The school has to acknowledge that and then give you ‘let’s have a meeting to discuss it. We want to try this first.’ And they have the right to try some interventions, but they still have to acknowledge your request and say what they’re going to do and then maybe when you’re going to come back and revisit that. And that’s the part that we have to stay on top of, because once we do that, or the months pass by, sometimes we need to circle back and say, ‘hey, is that intervention working? Or are we going to move forward with an evaluation?’ The school should be in communication with you on that, but far too often I see that it didn’t get to someone’s desk or whatever.

Lauren Clouser (Host)

Definitely, well, that’s so key to make sure that that timeline is being followed. Because time is so important for these students, like you said before, the skills build on top of each other. And by third grade, they’re reading in every subject.

Courtney Burnett

Right, exactly. And I also want to encourage parents, just because your child didn’t qualify…So this is just really important to say to people who say: ‘I asked once.’ So in the lower grades, kinder, first, second, a child might not qualify, but then when you get to third grade the requirements start changing, and then your child might be able to qualify, because let’s say their reading stayed here. But now the kids are here, you have a bigger gap that you could qualify. And then if everybody is just kind of here, so it’s not a one and done. And just because they didn’t qualify, or they didn’t move forward with a recommendation for evaluation in first grade, doesn’t mean that you shouldn’t revisit in third grade if your child is still struggling.

And that’s when you say, hey, we’ve done this a couple of times, the student does good for the first couple of months of school, then I don’t know if the tutoring stops, I don’t know what happens, and then we’re back to struggling and he’s still below grade level. The other thing I wanted to touch on, it wasn’t on there. But good grades, often, I hear this a lot. Well, your child has good grades, so they can’t have an IEP. And the federal law actually has verbiage in there that says that it can’t be the sole reason that they don’t recommend an IEP, meaning if your child has enough markers and struggles, and they happen to have good grades they happen to be making it through, that does not mean they can’t have an IEP. That happened with my son. And I’m like, okay, he is passing, I get it. But we’re really struggling here and you don’t really know what it’s taking for him to continue to pass and have decent grades. So I just want to help parents understand that.

And they can go to the federal website, IDEA website and kind of read through there, it’s very cumbersome, but you can kind of get an idea. And this is another big kind of umbrella term, it does not matter what state you live in. This is the federal law that every state, every school district has to follow. Their timelines can be faster, but they can’t be slower than what the federal government says. So they might be slightly different from state to state. But the federal guidelines are the kind of the maximum amount of time that can take. And it has the verbiage, some school districts change it a little bit, like they want the IEP to be written in five days after the meeting, and they technically could have a little longer. So parents understanding that…I get that a lot to like, ‘well, does that matter for my state?’

And yes, and public charters, if you’re not paying private tuition. I’m on a mission to spread that to public charters or public schools. So they have to follow it a lot, too. I’ve ran into a lot of charter schools thinking that those rules don’t apply to them. Private schools or religious schools where you pay a tuition, that’s when they are on their own, and you don’t have the protections of the public school. But anywhere your child’s going where you don’t pay tuition, and they’re taking public dollars, education dollars, it does apply. And that’s really important for parents to understand too.

Lauren Clouser (Host)

Absolutely These are all great things to keep in mind, so thank you for adding those. So what should a parent expect from an IEP? And how can they tell that the IEP is a good fit for their child?

Courtney Burnett

Yeah, so when you do your evaluation, and then they come over and they write the IEP, they have a section called the present levels. And that’s where we should be identifying any of the areas in the evaluation that were noted for qualifying for services. So if we see occupational or sensory needs, then we should see something in the IEP supporting that. If they qualified for speech, you should see a speech goal, and the speech goal should tie back into pragmatics or articulation, where your child struggles.

So I like to see it like a map where you have like this, it’s like a spiderweb, right? So our present levels are the center, and then we should see services and supports coming out from that that are supporting our child. Those should be child-centered goals, you know, and making sure there’s a lot of things you can work on. So I run into this a lot with my own kids and with the clients I help. There’s so much you can work on. And just because a therapist suggested this one goal or this one idea, you might think that working on a slightly different goal or objective is most important for your child right now. That’s where that ‘individualized’ comes in, and collaborating with the team.

And so when I helped my parents say we want to do a collaborative approach and come back and speak kindly and share ideas. So everybody should be able to share their ideas and collaborate and tweak things. Because it’s a draft, it’s a fluid document. So making sure if somebody has a goal, and you’re looking at that goal, as a parent, you’re like, my kid hates holding pencils, they can’t stand the sound of a pencil on paper, how are you going to work on that goal? Share that with the team, because you kind of already know that goal is not going to go very far, you have to get in your child’s mind. So really looking at what are their goals? How are they being implemented? It? Are they in a small group, one-on-one, push into the classroom, pull out, those are going to give you an idea of what your child’s day looks like, and how services are being delivered.

And then as a parent, you kind of do a checklist like, yeah, I think that’s going to be really good for them. Or I feel like that’s not. The other thing is, if you feel that you really want a social emotional goal, you really want your child to be able to make some friends, and they’re isolating, and they’re not making friends, you can suggest and ask for a social goal, or different things like that, too. Because we want to look at all the different areas and how we can help our child access their education, and then again, prepare for life after school, being able to get along with peers, and work in a small group, and those things are academically appropriate. So you can ask for those services if you think your child can really benefit and then have that team discussion.

And if a parent doesn’t understand how the goal is being tracked, we have to ask questions, because we’re gonna get progress notes. And that’s another way we can know if the IEP is working or how well it’s working. And if you don’t understand how they’re taking the data, then you as a parent can’t really see if your child’s making progress. So I’ve had to have them break it down for me before, break it down for my clients, collaborate about it. Ask for home to parent school communication, so that we can really make sure that we as parents are trying to facilitate and support those goals at home too. And so getting involved with them, and having that communication will help you know your child’s IEP is getting implemented as well.

Lauren Clouser (Host)

Absolutely. Yeah, asking questions even if you’re intimidated by the professionals in the room, it’s so key to understanding what’s going on and making sure that you have a good say in your child’s IEP.

Courtney Burnett

Yeah, and checking in. I highly, highly recommend parents…I know it’s kind of hard, but quarterly, I’ll send to my daughter’s PT, OT speech, I’ll do a little check-in, and it’s nothing scary or like I’m trying to catch them or anything. It’s not negative, oftentimes I’ll share something about what my daughter is doing at home that was really cool, if they’re doing any projects, or how they’re implementing some of their goals. And what it does is it builds a relationship with your child’s team beyond just that one meeting. And two, if an email bounces back, and they’re no longer at the school, you’re like, oh, what happened to speech? Oh, they’re on maternity leave or whatever. Okay, who’s filling in? So also, by doing those check-ins, you build that relationship, but you also stay kind of attuned to staffing issues, or anything that might happen at the school. If you’re reaching out and no one’s responding back to you, that’s often a sign that they are no longer with the school.

Lauren Clouser (Host)

That’s a great idea. So if a parent feels like they’re not really being heard in an IEP meeting, how can they make sure that their concerns are addressed?

Courtney Burnett

Yeah. And so I start with your case manager, I always try to go in order because when we jump ahead, we were not giving the school the proper opportunity to try to rectify, so reaching out to your case manager. So that’s usually if it’s a speech-only IEP, that would be your SLP, or the resource teachers, often the case manager. So make sure you know who your child’s case manager is. That’s who is kind of in charge of making sure everything gets delivered and everybody’s doing what they’re supposed to do.

So starting there, then oftentimes, I’ll loop in like assistant principal, like, hey, I’m trying to reach them. I’ve tried, when my concerns are not being addressed, asking for a parent concerns meeting. So having them come in and share your concerns. And if that doesn’t work, then I’ll usually go up to like the special ed director or director of exceptional students, sometimes it’s referenced as that, and say, hey, I’m trying to work with my team, I’m not feeling heard. Again, creating that paper trail.

Then another option, you do a letter outlining all of your concerns. And then the key thing is to send that to the case manager and CC my educational file, meaning it goes in your child’s actual school district file of these concerns. That way you’re going on record expressing your concerns, expressing that things aren’t getting done, and you’re giving them an opportunity to look into it to figure it out. So sometimes when I’ve done that, they’ll say you’re right, we had an OT quit, we haven’t been able to get one replaced, we were going to reach out when we had a plan, we didn’t have a plan. So we’re working on it, or whatever.

So sometimes they’ll give you a reason, sometimes they’ll just apologize, and then try to move forward with whatever we’re going to do to have that done. But being open and treating you as an equal member of the IEP team is important. So if you’re bringing research or valid concerns up about how things are being implemented, or your child’s mental well being and how they’re responding to that, and they’re dismissing you, that’s not okay. Because they might not be able to fix it, they might not be able to do exactly what you’re asking, but validation and saying, I hear you, Mrs. Burnett, this is what we can do. I looked into it, these are our limitations, or I can’t do anything about that right now. But I’m noting your concern, and we’re going to keep an eye on it. That goes a long way.

And so for any admin or teacher listening, I just encourage you to build those relationships. Because time and time again, if I have a good relationship with my IEP team and something goes awry, I’m so much more likely to handle it so differently if I already feel like I’m valued, and that they care about me and my kid, then if I feel like they’ve dismissed me, they’re not listening to me, I’m more likely to escalate it quicker and faster if I don’t have that relationship. So that goes a long way.

Lauren Clouser (Host)

Absolutely. Because then you’re on the defensive. So you want to have that relationship, it’s huge, I agree. How should a parent prepare for an IEP meeting if they’re new to IEP meetings? What sort of materials should they bring along? What should they expect?

Courtney Burnett

Yeah, so one thing is to be expected to be asked, what do you want your child to learn? Or what are some of your concerns or goals for your child this year? That was really hard for me to answer for my daughter with complex medical needs and a significant cognitive delay, because obviously, I wanted to say I want my daughter talking, I want my daughter walking, I want her to participate. So preparing that ahead of time where I could take the emotion of the sadness that my daughter wasn’t where I had envisioned she might be, and realizing some of her limitations with her disability, and then coming up with what could be a realistic goal for us this year.

So take the time to really understand what you’re hoping to get out of this year. What are your top concerns, what are things that…if my child could wait, and they understood waiting and they could wait five minutes while I’m cooking dinner, share that because then maybe they could build in waiting or staying on task or whatever. And they can build in these goals that could help support things at home that you’re like, if we could do this, this would be amazing.

Or if you have a real concern about stranger danger or safety, things like sharing that with the team. So bringing that in, sharing any pertinent medical information, I don’t suggest sending them the whole file. But if your child has seizures, making sure they know that they have seizures, what the protocol is, the safety plan, if your child’s allergic to bees, any pertinent medical information that they would need to help them access their education and keep them safe is really important to share. Sometimes parents think I don’t want them to know all of this personal information about my child, I totally get it. But giving them enough to be able to keep them safe and understand is really important when you come to the meeting.

And know you can bring people with you. I didn’t do that for a long time. It doesn’t have to be an advocate, although I’m always honored. But you can bring grandma, you can bring a home speech therapist or occupational therapist that understands your child and can speak to how they’re doing. And I’d recommend bringing someone because it’s an emotional experience, and you’re not going to catch everything at the meeting, because they’re gonna say something, your brain goes over here, you miss the next three sentences. So one time I had my friend and she’s like, what am I going to do? All I want you to do is just take notes, you don’t have to say anything, I just want you to sit here and capture any big things that kind of come up that I might forget after the meeting. And so my friend was like: I can do that. And so she just kind of took notes and made sure anything you wanted me to remind you of.

And so just bringing a support person, I think it’s just life changing for an IEP because it’s overwhelming. And if they’re a seasoned parent, and this is like your second or third IEP, I highly recommend taking a peek at the service minutes. Any of the goals they had, how did they do? Did they meet them? Did they not even make a movement on them? Do you want that goal carried forward if they didn’t make any progress? Do you want it copied and pasted for it or what do you want to do?

And I gave you guys the link, I actually have one that says five questions to ask at the IEP table that they can grab and download. And what’s really cool about that PDF is I have a little video in there on how to utilize the checklist. And then I also have some questions to ask if you think your child should have assistive technology, or they have an AAC device and you want to ask some questions about making sure it’s getting implemented. So it’s a really powerful little PDF guide that I made for anybody who wants it. And I highly recommend going through that, and preparing yourself mentally, gathering some of your documents so that you go in feeling confident as you can and proactive and knowing that you kind of have at least this base ready to go. Take control of what you can control, you can control what you bring to the meeting. And if you prepare your parent input statement. So doing that is really helpful.

Lauren Clouser (Host)

Absolutely. Well I love that you brought up that you can bring somebody with you to help make that process a little easier, a little less intimidating, or to bring in some new information. I think that’s a great point.

Courtney Burnett

Yeah, and I just recommend, I don’t like surprises. Nobody likes surprises. So you can tell them you’re bringing them, but you don’t have to. It’s something that has come up for some of my clients. ‘Well, you didn’t tell us,’ you don’t have to. I recommend it because they can have the right number of seats or whatever. But just know, again, go take a peek at the federal guidelines, you’re allowed to bring anybody with you that has information or can support you in that process. So I just don’t want any parent to feel bullied and saying you can’t bring them. You can.

And if we’re doing everything the way we should, we should not feel worried or be pushing people out. If we’re being transparent as a school district, and we’re doing a great job, and we’re confident in the services, then we should have no problem collaborating and working with whoever the parent brings, and letting grandma ask questions, and having her understand the process. Because when we’re all rolling in the same direction for the child and we all know what’s going on, that child is going to make so much more progress than a fragmented system where only these people are working on this, these people are doing it totally different. The child’s not going to make as much progress. So it’s not only emotionally good, but I think it’s for the betterment of the child as well.

Lauren Clouser (Host)

Absolutely. That’s so true. Have you ever encountered school districts where they either undermine the impact of a student’s learning disability or had lowered expectations for students with LD? Like they might have said ‘this is the ceiling, this is all you can expect from your child?’ And if so, how do you recommend parents to approach that?

Courtney Burnett

Yeah, I always want to presume competence from my kids who are non-speaking to any other disability. I often feel like the reading is at the heart of it. So while they’re going to struggle because they have a learning disability with that, what program are they using? Have they tried a different kind of intervention? What’s happening? So if your child isn’t moving, and they haven’t tried a different type of intervention or different reading program, just because this is what the school bought for everybody does not mean that’s the only option that your child has for learning to read.

So I highly recommend looking at…and I probably don’t have enough time to go all the way into my other passion, which is assistive technology evaluation. So just like with you have an evaluation for education, speech, all these things, you can actually have an assistive technology evaluation where they look at your child in all of their areas of learning life skills, and then they come and say: what tools and support…some of them are expensive, some of them are free, so really customizing your child’s IEP to have the appropriate tools and supports for them to maximize their learning. So if they’re not making progress, let’s say on handwriting, it’s still completely illegible, we’ve really tried to get the letter formation, is it time to move on to typing? Do we need to have a different kind of intervention to strengthen the hand muscles and get spatial things going, then come back?

So if you feel like we’ve not tried different reading programs, we haven’t tried a different approach, they’re not making progress on their goals, then that’s your time to say this isn’t working and I feel like my child’s being limited. And then start asking for the assistive technology evaluation. Or if you’re coming up on your every three years, your child is being reevaluated, well, what happens a lot is if they think they are still going to qualify for special education, they’ll do a RED, which is a review of existing data, and then they move them forward in special ed. So that’s great, your child still qualifies for special ed. You have the right to say I still agree, you’re right, my child 100% still qualifies for special ed, but I have not seen very much movement in reading or math or, we weren’t doing a math intervention or having specialized instruction for math. But we’re really struggling in that I would like an actual evaluation to look at math. So utilizing your evaluations to not just copy and paste forward, like my daughter had gotten to middle school and we had not had a new speech eval.

I know that she’s still nonspeaking and I know that she’s still qualified for special ed, but can we try and look at where she’s at? And what other information, because you might get really valuable information from that eval that changes the goals or the treatment plan, because now we’ve identified this other area that wasn’t in their previous eval because they were three and that wasn’t really appropriate to do that test on a three year old. But now they’re in sixth grade, so really looking at has my child been reevaluated? Or did they just do a review of existing data? So I know it’s kind of a long answer. But really realizing that if you feel like your child is not making progress and you feel like they can do more if they had this support, like I think if my child could just type, or talk to text sends it to the computer, I feel like they could write a paragraph. But they can’t when they’re trying to write the paragraph. So really exploring that and getting your concerns into the IEP, into the parent input statement. And then leveraging the different options you have for assistive technology, evaluation and reevaluation, that sort of thing.

Lauren Clouser (Host)

That’s great advice. So how can parents, if they run into trouble with the school district, whether it’s a time delay in services, or even an IEP violation, what are sort of the steps that you would recommend parents take to resolve that issue?

Courtney Burnett

Yeah, so we’re seeing this a lot with post-COVID world and how things were delivered during COVID and school closures, and then a lot of staffing issues. So the first thing that I want to help everybody understand is the IEP is a legal document, and it does not care if there’s staffing issues. What I mean by that is, the services were still laid out and the child still needs them. If the school doesn’t have the school personnel to deliver the IEP the way it was written, we need to have a meeting with the parent and we need to come up with a contingency plan.

Okay, this child is supposed to have reading intervention. We don’t have a reading intervention specialist right now, we’re working on hiring them, so here’s how we’re going to support your child in the meantime. Then it’s important to help parents understand that, or I’ve seen this also happen, like somebody goes on maternity leave, and then nobody does therapy while they’re on maternity leave. They’re certainly allowed to have a baby and go on maternity leave, but what needs to happen is those service minutes have to be made up in some way, and that’s called compensatory services.

So if your child’s listed on there for 120 minutes a month of speech, and they miss three months of speech because they didn’t have anybody to do it, then they need to come to you and figure out… it’s basically an offer and compromise. Like, we know we owe you 500 minutes, we’re going to try to give you 250. And then you say you’re okay with 250 or not, and you kind of negotiate those compensatory services. And then documenting how they’re going to support your child’s speech right now with no specialists, how are they going to do that?

They don’t like to do this, but eventually you can request outside services and the school will reimburse. So if they’re not hiring that, and your child’s gone months and months and months without it, then you can say I’m requesting that tutoring be reimbursed because we’re going to get an outside reading specialist and work with the school. It’s not usually dollar to dollar, maybe they say they’ll pay for X amount, but you have a right, your child has a right to the services that are outlined in their IEP, their needs didn’t change. It’s the staffing that’s usually the problem. A gap in services happens when there’s a gap and not having staff.

So working with them, you have the right to know how they’re approaching that and that those services need to be made up in some capacity. I’ve seen some schools offer summer school or like I said, paying for outside therapists to come in, and then they pay the clinic directly for those services. But just knowing that your IEP for your child is a legal document, that’s why they’re very specific on what will go in there and the words they use, because it’s a contract of ‘this is what your child needs, this is what’s going to be delivered, and this is how it’s going to be delivered.’ So when there’s a breach in contract, then we have to address it. So you have the rights as a parent. And again, it shouldn’t be our job, but it is, to stay on top of are my child’s services being delivered? Do they have the right personnel and getting it documented? How long did they go without that service? So you know roughly how many minutes they missed, so that you can start to do that offer and compromise when they do get somebody back into place. I’ve seen some schools be very transparent. <claps> I’m so happy for them. That’s how it should be. They send a letter home and they say so you’re aware, we do not have an OT right now, we are actively searching, here’s what we’re doing. We will be in touch with you when we have an OT and we will start to figure out how to mitigate the situation. But not every school does that. And so if you don’t know they miss three months, how can you make sure that they get that? You can’t.

So you want me to touch on IEP in a Day, I think? So it’s an advocacy service that I developed. And really what it is is the parents sign up for the service, they send me their child’s IEP, I review it, and I created my own little parent handbook roadmap. And so we meet together, on Zoom, and we go over my findings, and then I help them fill out their workbook. So I have, red is stuff that’s missing or wasn’t there, green is stuff that was there, but could be better. And when they’re done with our two hour working session, they walk away with their advocacy roadmap and their to do list, and then they get 30 days of my ongoing support through an app, essentially, that helps them work out the advocacy plan that we came up with, because they’re going to hit snags where the school says ‘we don’t do that here.’ Or we don’t want to do that, or we don’t think we have to do that. And so I coached them through it.

And so I had come up with the name IEP In A Day, because we do that coaching session in a day. And I just find that everyone’s so busy. And so doing a lot of back and forth about the IEP can be overwhelming for families. So having a structured time where they can get together with me and roll that out is one of the things that I do in my advocacy business. And I really love supporting families. And the other thing about that advocacy model through IEP In A Day, is I have a teaching section in there too. So every section of the IEP, in their advocacy roadmap book, they get their customized workbook. I teach them about what that section is and why it’s important, why it’s included in the IEP.

So the families who have worked with me and we’re like, just the education piece, like why this section of the IEP matters was so helpful. And so my goal is to empower families. A lot of them do use me again and again because they like the support. But my goal was to have them feel empowered and have the tools and knowledge to where they didn’t feel like they had to have me at every meeting because I’m empowering and teaching them how to do this for their child, year after year, because they need to have those foundational skills and knowledge for the IEP to be able to effectively advocate for their child. So the families…they loved it. It’s been out for about a year. And then I do IEP reviews as well. And that one is the parents send me their IEP, they fill out a Google form about their top concerns, I review and go through their IEP highlighting things that I feel might be missing or where their parent concerns could be plugged in, and then might give them a video review of their child’s document so that, again, they can go and feel empowered to get those things adjusted for their child.

And I know some people are like, I hate IEPs. I love them. Because I know, they’re cumbersome, and they’re not that fun. But I know the power of them. And so I think for me, helping families feel empowered and ready to take on this journey with their child is going to change the outcome of their child’s life. And some of what we’re doing as parents and advocates is also helping advocate for the right support that teachers need that they’re not getting. It’s not that they’re not asking, it’s that they’re not getting it. So again, not to go off on a tangent on that.

But oftentimes, as parents and advocates when we’re advocating for something, and we get it approved, all behind closed doors. Thank you, I’ve been asking for that for four months, and nobody wanted to give me the one on one aid for my classroom, or no one wanted to give me the staff training, you know, that you can have that run into your IEP, that the staff can be trained on this communication system or this intervention strategy. But it costs money. And they know they can’t deny it for the cost, because that would be illegal, but not bringing it up, just not getting it out there. So sometimes teachers and therapists are begging for support, and they’re not getting it. So when you bring it up, and you start the ball rolling forward, as a parent, you’re going to save teachers from leaving, and you’re going to save therapists from quitting because they want and they need the support, too, that they’re not getting.

So sometimes I advocate for therapists too. I’ve had a teacher call me and say, can I hire an advocate? They’re railroading my student. So I want all the teachers to know, my husband’s a teacher, I love teachers, I know how hard they work. And I really don’t want it to be us versus them. That’s not the kind of advocate and I am, that’s not the kind of parent I am. Because in order to do change, we need to have it from a collaborative standpoint and try to take in all the different situations that are happening for teachers and therapists as well as parents and children. And then how can we write the best IEP to support everyone, because having a teacher shortage is not helping anybody get the services they need.

So oftentimes I’m like, I saved another job, because if we get them supported, then they might not leave. And that’s important, too. So if a parent’s like I’m on the fence, ask your teacher like, hey, do you feel like this would be helpful for you? Ask them, what could I ask for at the meeting that might support you, too? You’re not going to call them out and say, you know, Miss Smith said this, but have it in the back of your mind what your teacher needs to be able to implement this IEP better to get your child where they want them to be. And, you know, there’s good and bad in every profession, but I tell you teaching is so hard, I feel like if you’re not there for the kids, you’re not there for the money. So like, why are you there? Really trying to figure out how we can have their backs too, I think will help your child as well. And oftentimes, it might just be as simple as having paper to print. I mean, so we just don’t know, until we ask our teachers, what help could I get for you to be able to implement this? So that’s important too.

Lauren Clouser (Host)

Well, I love that you said it’s not us versus them, because that’s so key to keep in mind. It’s training and empowerment on all sides. So thank you so much for advocating for that.

Courtney Burnett

Yeah. And I’m on Instagram, I’m active in my story. So if families want to follow me, it’s just @courtneyburnettadvoate. And I give weekly tips on different things happening in special ed. And so I welcome them to come and check it out. And I’m just honored to be on the podcast and to present in Vegas at the conference. It was amazing. You guys did a great job, so I highly recommend it. I just saw what is it, is it in Florida?

Lauren Clouser (Host)

Yes! We’re in Orlando next year. Well, Courtney, thank you so much, you have provided us with just a wealth of information. So thank you so much.

Courtney Burnett

You’re welcome. Thank you for inviting me.

Lauren Clouser (Host) 54:54

Thank you for listening to the LDA podcast. To learn more about LDA and to get valuable resources and support, visit ldaamerica.org

Handwriting Instruction in the Digital Age

Heard on The LDA Podcast

Dr. Nancy Cushen White, a clinical professor at UCSF and a certified instructor of teaching for the Slingerland Multisensory (Multimodal) Structured Language Approach, sits down to talk to us about dysgraphia, the cognitive skills writing uses, how handwriting can improve reading and spelling skills better than typing, recommendations for handwriting instruction, and much more!

Read the Transcript

Lauren Clouser, Host

Welcome to the LDA Podcast, a series by the Learning Disabilities Association of America. Our podcast is dedicated to exploring topics of interest to educators, individuals with learning disabilities, parents, and professionals to work towards our goal of creating a more equitable world. I’m here today with Dr. Nancy Cushen White. She is a clinical professor at UCSF. She’s a certified instructor of the Slingerland Multisensory (Multimodal) Structured Language Approach, and she’s here today to talk to us about handwriting and dysgraphia. So thank you for being here, Nancy.

Dr. Nancy Cushen White

Thank you for inviting me.

Lauren Clouser, Host

So to start off, could you explain dysgraphia and how it affects handwriting?

Dr. Nancy Cushen White

Okay, well, first of all, handwriting is partly a motor skill, but it’s more than that. So letter forms are stored and processed in working memory, and it’s the same letters that would be processed for reading and spelling, but they also play a role in handwriting. So the orthographic loop. Think of it as the mind’s eye where letters and graphemes are stored and processed in working memory in connection with the sequential hand movements performing the letters, the movement of hands and the fingers. Dysgraphia is impaired handwriting, and that can interfere with written spelling, but it can also interfere with the speed of writing as well as the legibility.

And dysgraphia may occur alone, with dyslexia, with an oral language difficulty, or with both. Dysgraphia, in addition to the impaired handwriting part, the part that deals with spelling is orthographic coding, and orthographic coding involves that same working memory we talked about for the same letters that are going to be involved in reading and spelling. But in addition to that, when they’re in working memory, we can manipulate them. So it’s like that mind’s eye, you’re seeing them, you can move things around in the short term, and then eventually that develops a permanent memory for those words so that you can access them.

But it’s not just the visual image of them, it’s in combination or connection or integration with their pronunciation and means. And then, of course, when the handwriting comes in, there’s the sequential movements for forming each of the letters. So when we’re talking about dysgraphia, we’re talking about motor skills. But people with dysgraphia may have problems with one or both. They may have trouble with the orthographic coding for spelling or with the planning, the sequential finger movements for writing or both.

Lauren Clouser, Host

That’s good to know. So there’s two parts. So could you talk a little bit more about the studies that support integrated handwriting instruction in K-12?

Dr. Nancy Cushen White

In 2016, Wolf, Abbott, and Berninger did a study on classroom instruction. There were two studies. The first study looked at first graders, and they taught manuscript handwriting letters, and that manuscript instruction was embedded within a multimodal approach for teaching spelling, reading and composing and composition. And the comparison group was just a business as usual. They also got manuscript handwriting instructions, but it was not systematically related to the other literacy activities. Both groups improved on automatic alphabet writing. The treatment group, however, improved significantly more than the control group from the second to the 9th month of first grade.

The treatment measures were dictated spelling, so they were writing spelling words and recognition for reading of word specific spellings among phonological foils. And then study two looked at those same first graders that received the systematic instruction along with the manuscript and gave them a second year of instruction still embedded within them, multimodal structured language lessons. And then there was another group who got cursive. So they had a year of manuscript, a year of cursive not embedded within. And the first group had two years. And the kids, not surprisingly, I suppose people who teach them, results are discussed in Mastering the Handwriting Format before introducing another format.

So those kids who had a year to learn it and then a year to practice it became much more automatic and they were able to use it functionally at higher levels than the students who only had one year of each. And these were not necessarily kids diagnosed with a learning disability. These were regular classrooms, just beginning 1st 2nd graders.

Lauren Clouser, Host

Well, and that already sort of answers my second question here. It’s a digital age now. There’s a lot more on computers and typing. So why is handwriting still important?

Dr. Nancy Cushen White

The orthographic loop involved that the sequential finger and hand movements for writing keyboarding does not. So, for example, there’s a study on students taking notes, and the question was will the students taking notes on the computer do better than the students taking written notes? And certainly from a personal point of view, when I heard that question, I thought I can type every word I hear, but I don’t have to be paying attention to do it. I might have to go back and then rethink the whole thing. But if I’m writing, I know I don’t have time to write every word. I actually have to think about what I’m hearing and decide what’s most important. So not only did they do better right after the note taking exercise when they were asked questions, but they did better later and in applying the information.

So in short, keyboarding is passive, a much more passive exercise. And what you’re doing with your fingers, it’s in a different place, but you’re doing the same movement with handwriting formation of each letter has a unique sequence of movements, and if it’s taught in a way that associates the name of the letter with what the letter looks like and that specific unique sequence of movements for forming each one, then that carries over to reading and spelling in ways that keyboarding cannot. Now I’m not going to throw away my computer.

There are still things that I will always do in that way. But I do recognize that a more recent study by Wiley and Rapp, it was the Arabic language, but it was a study on the effects of handwriting experience studying the modality effects typing, visual presentation, and writing. So with growing use of the Internet, cell phones, tablets, the question was how much time and resources should be spent on teaching handwriting, which is essentially what your question was. So Wiley and Rapp conducted the training study on 42 adults and compared the benefits of typing, visual presentation, and handwriting. And basically, the big idea was that handwriting is a productive use of learning time.

Handwriting practice, not the typing or visual tasks, resulted in a much better performance on reading and spelling tasks that were not specifically taught. So the implications are that a subject assigned to the handwriting practice group uses their knowledge of how to write to reinforce their spelling and reading of words. So the benefits of time spent practicing handwriting go far past just handwriting to letter recognition, word reading, spelling, categorizing, and memory.

Lauren Clouser, Host

This isn’t just for students with dysgraphia. This is also all students.

Dr. Nancy Cushen White

Right. The other thing about writing, once it’s written, you can look at it, you can analyze it, you can do something, and you can do that if you typed it also. But the question is, the cognitive strength that goes into the actual writing seems to be connected with deeper processing than just typing.

Lauren Clouser, Host

So how is handwriting useful? You touched on this as well, but throughout a child’s development, is it useful beyond just when you’re originally learning handwriting?

Dr. Nancy Cushen White

Well, Interestingly. I’m going to start at the top and then go to the bottom. But with teachers taking our training courses, there are teachers who feel for their lesson plans. They may have a template they can fill in, they may have something where they can type the lesson plan. But many of them feel that if they write it, actually write it, they learn it better, they understand it better, they think it through, and they catch mistakes or glitches that they might not catch if they’re doing it in those other ways. That’s not certainly true for everyone.

But if children learn handwriting is not functional unless it’s automatic. But nor is keyboarding really in terms of the automaticity and being able to use it functionally. So if students are not taught a way to make each letter and they make the letter a different way every time, then they’re not learning a sequence of movements that connects with the name of that letter and what the letter looks like. I’m not saying there’s only one way to form letters. There are many correct ways to form most letters. But learning one way is the only way to get to automaticity.

Lauren Clouser, Host

Right.

Dr. Nancy Cushen White

So starting off that way and in that study with Wolf, Abbot, and Berninger, in that classroom study, those children had a year to learn it. Every day they learned a few letters, they learned to read and write words with those letters. They continued practicing those letters, learned a few more. But every day, the handwriting instruction was integrated into the lesson from skills, learning something new to functional use of those skills. And as the year went on and they learned more and were able to do more, then the levels of functional use increased.

Then they had a whole other year in second grade to automatize and use the skills more so that then they were automatic. Many times cursive is taught, the letters are taught. Sometimes they don’t even teach the connections of the cursive letters. And then, well, you now know cursive if they aren’t required to use it, they’re not going to practice it enough for it to become automatic, right. Unfortunately, for better or for worse, there’s no substitute for practice. But you need to practice what you want to remember, which is why learning a an efficient sequence of movements for each letter that’s unique to that letter is so important.

Lauren Clouser, Host

So we’ve talked a lot about handwriting instruction, and it’s important. Would you be able to tell us a little bit about what the ideal handwriting instruction would look like in a classroom?

Dr. Nancy Cushen White

The best approach? Well, the approach that was used in that study, the approach that I’ve used most extensively is the Slingerland approach. But what’s important about it is that you’re teaching reading, writing, spelling, handwriting, and even oral language, all in an integrated way. So every lesson includes aspects of all of those because reading doesn’t occur in one spot in your brain. It’s a reading network, and the integration is the part that doesn’t always happen if there’s a glitch or a weakness anywhere along the way.

So teaching the letters for writing first that you’re going to use in spelling and in reading, just a few. So they’re getting lots of practice with that. Then more letters are added, more complexities in the words are added, the morphology comes into play. You’re teaching suffixes and prefixes to add to bases. You’re making kids aware of those meaningful units. You’re also emphasizing in spelling and in reading, not just the letter or saying what do you hear? But what is your mouth doing?

So if they’re trying to spell splash and they spell splash, then your word is splash. Say splash. Now say splash. Was that the same word? No. So you’ve already spelled the first two sounds. So if we’re using letters on a chart that can see that if not, say the first two sounds in the words, what’s the next thing your mouth does instead of just what do you hear? What is the next thing your mouth does? If they again say splash, that would be splash. Your word is splashed. Let’s say it slowly. Say SP, as you already did SP. What’s the next thing your mouth does when you’re saying that word and try to get them to stop. And when they feel that, oh, and they’ve already learned L how to write it, they’ve learned a key word for L, and they learn the sound L.

So then they’ve got it. They move on. That’s just emphasizing in both reading and for spelling, there’s a motor aspect. So in that orthographic loop for learning the patterns or in that working memory piece where you’re seeing the parts of the words that you’re working with, there’s also the motor aspect of the sequence of wounds performing them, and that’s connected to the memory. Sometimes it’s the kinesthetic memory that helps bring back the letter that you’re looking for in the retrieval process, whereas with the phonological loop, the motor aspect is connected to speech.

So it’s not just what does the letter look like? What do you hear? Those speech sounds are not just sounds, and that’s really important as part of that. But the units are getting larger and larger. So then those words with additional morphemes added are put into phrases, the phrases into sentences. And then you’re working toward dictation of paragraphs. And when you’re reading, you start again. You start with the symbol sound or the graphing phoneme.

Then you’re decoding words, but everything you’re doing… think of decoding and encoding as like addition and subtraction two sides of the same coin. Certainly spelling gets more complicated when there are multiple spellings, but there’s still a connection there. So we talked about the student who has dysgraphia who may have difficulty with having impaired handwriting. And then we also said that it could be spelling, it could be the sequential movements of handwriting itself, or it could be a combination of both. And this is an example of a student that had both difficulty with the letter formation and most certainly and very extremely with the spelling. He was in fifth grade. He was eleven years old. So he was in the fifth grade for the second time actually.

And when he was being tested, he was not being tested because anybody thought he was particularly bright, but because they felt he was a slow learner kind of across the board. And the psychologist said he was assessing him asked him one of the verbal absurdities questions, what’s wrong with the sun shining at midnight? He threw back his head and said, I need more information. What part of the world is it?

He actually ended up in a pilot special day class for students who were intellectually gifted with dyslexia. And he certainly fit the bill. But as you can see here, he had a standard score of 58 for word reading, a standard score of 57 for spelling. This is a kid who tests out as intellectually gifted when reading and writing were not required. So he had difficulty with both the handwriting and reading. And then five months later, this is what he was able to do. Now he still has a lot of words misspelled, but he’s improved. This is showing the words that he missed, in case they couldn’t tell. But his standard score has gone from 58 to 68 in five months.

He has a long way to go, obviously, but you can tell the qualitative differences in the spelling is that he knows now that every single syllable has to have a vowel sound, and he has represented a vowel sound in every single one of them. So whereas on the first one you couldn’t even tell what the words were supposed to be, now you can pretty much figure out what most of them are. And his spelling went up to the centers for 64, but still, I mean, that’s hugely below average, not to mention how much of a discrepancy between what he’s able to do intellectually and he hasn’t learned yet, but he was on his way.

And then this is a student who had even more difficulty with motor skills, even for non language tasks, even for just drawing the figures. And his spelling had a standard score of 63 and a spelling standard score of 62. But you can see from the errors that he made, he has visually similar letters like B, D has those issues. He has CK at the beginning of words. So obviously his orthographic memory is questionable because CK never comes at the beginning of a word in English.

But you see how in both cases they were giving everything they had to this task, and every one of them did their best to the very end. We stopped at the same point, but they didn’t know it at all. They put a line to show what they were told to do. If they had any idea what any of the letters could be spelled, they put what those were. And this was that same student five months later. So he still didn’t finish the marks. We didn’t teach him to make the marks, but he did teach him to write in cursive, so he was using that. And again, there’s still errors, but the quality of those errors are far different. And his standard score went from 63 to 104 in reading in five months, and from 62 to 88 in spelling.

This shows a 9th grader. This was actually in Dubai. It was a four week summer school, three and a half hours of instruction a day, and this was his attempt to write single words on the first day. This does not look like a 9th graders handwriting. It wasn’t manuscript, but you see, letter size relationships are off, the alignment is questionable, and there’s a lot of emphasis going to be put on morphology.

And he did not have a sense of the spelling of the bases or the prefixes, some more prefixes and suffixes than bases. But still and this was one month later where he spelled words that were of similar complexity, not exactly the same words. He still had some confusion between the base ‘sci,’ which means to know know, as in science or conscious, and a base ‘cise’ to cut. He still had some of that confusion there, but you can see him really working through using both the phonology and the morphology to spell.

This shows that even in those lessons that you’re teaching, not testing, you start with practicing those cursive letter connections that they’re going to need when they write words here. So you’re trying to prevent any errors or confusions that might occur, then practicing the phoneme graphene encoding, spelling. Here’s an example of a lesson where we practiced the connections that he was going to need in that lesson, and then we did some morphological awareness practice. Right. The main spelling of the prefix that means with her together, the Latin prefix that means with her together. Right. The base element that means to trust.

These were all things he was going to need later on in the lesson, and you see how that develops then into words and phrases. So always working from skills to functional use. And these are young adults in a pretrial diversion program for San Francisco Mentor Court. These were all students who had gotten themselves into difficult trouble, and they were given a chance of either jail time or literacy class. I don’t know if they decided they made the right choice, but the thing that was daunting to me was that it was only once a week for 2 hours, and I knew that they could learn it, but I just didn’t know if 2 hours a week was going to be enough to get them to move fast enough that they were going to be able to feel the progress.

So they started off with zero third percentile, 55 standard score, 20 years old for spelling and a year later, but with only 2 hours a week of instruction, there was a lot of improvement. So the standard score was 80 for spelling, the percentile as a whole number, 9th percentile. He still has mistakes, but the confidence, even in the writing, he’s using cursive. He’s using a lot of the things that he learned, and it shows me all of so many things he hasn’t learned yet that he still needed to learn. But motivation was never an issue there, and it wasn’t just because of the consequence.

Lauren Clouser, Host

If they didn’t, what are some small changes, if needed, that general education teachers can make to help students to reap the benefits of handwriting?

Dr. Nancy Cushen White

I think the most important piece is that all of us have to understand that handwriting is only functional if it’s automatic, because in so many studies that we didn’t talk about, the idea is if you’re having to put energy in, how am I going to make this letter? You can’t think even if you had an idea of what you wanted to say, you have to then focus on how do I make each letter? How do I spell? How do I organize it on all the things the handwriting can take care of, the organization, the spatial, and that sequence of movements, and then there aren’t so many things to keep in working memory.

So just teaching the letters, even teaching all of the letters without practice, with a few at a time for most kids isn’t going to work. It’s not going to get them where. And even kids whose cursive might be more legible at the beginning, it’s still going to be slower because they’re learning it. That was the reason, the importance of having those two years of instruction, two years of manuscript, and then two years of cursive that wasn’t done in the study, but that’s what it would suggest.

And so they go back to manuscript because it’s faster, even though it’s less. So practice makes permanent. I think that means what I’m saying is that’s not a little change, because it means every day in a day that already has so many demands on teachers’ time. But that time is so well spent because it can make such a huge improvement. But just teaching the writing without integrating it with why you use writing, that doesn’t get the kids where they need to be. They don’t assume it’s like teaching kids to decode and then they read a passage and they don’t use anything that you taught them because you didn’t teach them.

The purpose, I’m sure the teachers are saying, is assuming that you’re learning to do this. So when you reconnect text, you’re going to be able to decode words, but you have to guide them into that and give them that practice. So writing isn’t a thing that you do over here. And remember the literacy networks, both for written language and for, well, the language networks, the oral language networks, the written language networks are all connected even when you’re looking at the phonological loop, which is storing and working memory, verbal information. But the memory part that’s the strongest is often the articulation piece, which is motor. And with the orthographic loop, it goes to the motor for handwriting.

Lauren Clouser, Host

Nothing exists in a bubble.

Dr. Nancy Cushen White

Unfortunately, right or not, it’s fortunate once you get all the pieces there to connect. But it takes time, definitely, and it can’t be done piecemeal, there always has to be the connections. So a comprehensive program, including all the language art skills, reinforcing each other and time to practice those skills. You can’t take shortcuts, but in the end it takes less time, but you just don’t know that until you get there. Very wise. Teacher Bets Lynn once said speed is not the road to success. Careful practice is the road to speed.

And I think that’s such an important thing to remember is if we try to get the kids to go faster than they can go functionally, meaning correctly, then it slows them down because they’re practicing mistakes they know. We call it ideal speed or optimum speed, which is as fast as you can do what you’re doing correctly and benefit from it. Say, if you read faster than you can comprehend, what’s the point?

Lauren Clouser, Host

Right.

Dr. Nancy Cushen White

Same thing with writing. If you’re going so fast that you don’t feel that sequence of movements and you don’t have control of your pencil, then you’re not learning something that you can use and you also don’t want to go so slowly that you’re not getting the full sequence of movements for the whole letter. Because there are a number of studies that show that teaching students the actual sequence of movements, talking about it, making it real to them, not just feeling it, but also being able to put words to it, helps them to connect in the studies that look at teaching letters to children, teaching them to write the letters at the beginning connects to reading. So once you’ve learned to write a letter, when you look at a letter even though you’re not writing it, the part of your brain that has to do with the formation of that letter is activated at the same time you’re looking at it and vice versa.

Lauren Clouser, Host

Well, this is a great conversation. Thank you so much for sitting down and talking to me about it.

Dr. Nancy Cushen White

Thank you so much for inviting me to talk to you and thank you for your thoughtful questions.

Lauren Clouser, Host

Thank you for listening to the LDA podcast to learn more about LDA and to get valuable resources and support visit ldamerica.org.

Key Conversations: Talking to Your Child About their LD

Heard on The LDA Podcast

How can parents and educators talk to their child about their learning disability? Dr. Rebecca Rolland, a speech language pathologist and educator at the Harvard Graduate School of Education and Harvard Medical School, talks about the importance of having rich conversations with your kids, how these conversations can build resilience and empathy, and more.

Read the Transcript:

Lauren Clouser, Host

Welcome to the LDA podcast, a series by The Learning Disabilities Association of America. Our podcast is dedicated to exploring topics of interest to educators, individuals with learning disabilities, parents and professionals to work towards our goal of creating a more equitable world. Hi, everyone. Thank you so much for joining us for the LDA Podcast. I’m here today with Dr. Rebecca Rolland, a speech language pathologist and education lecturer, who just recently published The Art of Talking With Children, a book focused on enhancing relationships with kids. So Rebecca, thank you so much for being here today.

Dr. Rebecca Rolland

Thanks for having me.

Lauren Clouser, Host

So just to start off, could you give us a little bit of your background?

Dr. Rebecca Rolland

Yes, definitely. So I’m a speech language pathologist. And I teach, as you mentioned, at the Harvard Graduate School of Education, as well as Harvard Medical School. And as part of that work, I teach educational assessment, so focused on understanding language and literacy skills, and really, basically creating learning profiles of children. So integrating information about their math development, their psychosocial development, and their obviously reading and writing skills with their oral language skills. So I was trained very much to integrate oral language with reading and writing. And so that forms a big part of my work as well.

Lauren Clouser, Host

That’s great. So you’ve had some experience working to diagnose learning disabilities at the Children’s Hospital in Boston, I believe. So when you’re working with kids to test for a diagnosis, as somebody who studies language and is very conscious of language, is there any sort of certain language that you use when you talk with them to help them understand the process? I know that can vary by age and things too.

Dr. Rebecca Rolland

Of course, definitely. Yes, I do always talk to kids about the process. And I think that is so important. So many children I’ve worked with over the years really don’t necessarily know why they’re being assessed, or even have fears about it. They might have assumptions. For example, I’ve had kids say to me, Oh, I’m doing this because I’m probably not smart. Or even things like I’m doing this because I might have to leave my school if it doesn’t go well. So all the way from kids who do know a lot about it. So some children will say, Oh, I’m doing this so they understand how to learn, how to teach me better how I learn, and so on.

And so I really approach it with children from an empowerment perspective. So I think about helping educate children, and then actually helping them take lessons back that they can use even in their classrooms. So I’ll say to them, for example, that this is really about understanding how you learn and then how teachers, your parents, and so on, can help you learn best. So really kind of creating a map of your thinking process, and how all of the pieces work together. So I’ve also emphasized that we all think and learn differently, I think some kids think, you know, there’s some typical learners, and there’s some atypical learners. And I think it’s important to kind of break that stereotype or that assumption and recognize that really, there is a spectrum of learning. So I bring that up to children as well.

Lauren Clouser, Host

Absolutely, yeah, there really is this misconception of I’m just not smart, and things like that. So helping to explain that away is helpful. And it sounds like a lot of just being open with them about the process and being honest as well. So that’s great.

Dr. Rebecca Rolland

Definitely.

Lauren Clouser, Host

So how do you go about discussing a learning learning disability diagnosis with your child, as a parent? Say they’ve just gotten this diagnosis and maybe they don’t understand it? What can a parent say that can really kind of start these conversations?

Dr. Rebecca Rolland

Definitely. Yeah. So I think it does depend on age. But I think the first part is really just to reflect on and kind of check in with your child about if they feel ready to discuss it. So I think sometimes, if we get a diagnosis, we want to leap in and kind of process it together with a child. But at the same time, it can be helpful to reflect first, what is your perception of that diagnosis? How much do you know about it? And it might be a time and opportunity to educate yourself a bit more before going into that conversation. Because sometimes there are a lot of misconceptions from the parent side as well. And so it’s really important to go in with a bit of facts and a bit of understanding so you can support your child.

So that’s one, and to really check in with your child. Do they want to talk about it now? That’s the first thing. I think the second thing is really to ask what they understand about the diagnosis to see what their perception is of it. I’ve been really surprised, some children really welcome a diagnosis. So for example, I’ve worked with kids who have been struggling with reading for several years, and they’ve, you know, gotten a very negative self perception. They think, oh, this is evidence that some kids have said my brain is broken or there’s something wrong with me and I don’t know what, so actually hearing okay, you have dyslexia and here’s what this research is about it. Here’s what the science says, and here’s how we can help you. It really does come as a relief to some kids.

To others, obviously, not so much. So they might find this to be quite negative. But I think one thing to keep in mind is that kids are really affected by the way we perceive and talk about their diagnoses. And same for the classroom and the teachers. So if we can create an environment where it’s normalized and talked about in terms of learning differences, in terms of supports, and so on, kids can really feel better to be open about it. I’ve even encouraged some students who want to, and where the teacher is open to it, to talk openly. One actually presented about their dyslexia diagnosis as one of their classes. So I thought that was really great, because he felt empowered to do that, and to educate his classmates as well.

Lauren Clouser, Host

Absolutely. So there’s obviously a wide spectrum of where kids might be falling, whether they want to talk about it or not, could you give me an example of how you would approach a conversation with a younger student who might not have the skills to entirely understand their diagnosis yet, versus maybe an older student who maybe needs to focus more on like self advocacy?

Dr. Rebecca Rolland

Definitely, yeah. So for younger students, I really do think a little bit more concretely. And I think the younger the child, the more concrete you might want to be. But to really emphasize, you know, that there are certain things that can be hard for us, and certain things that can be easier, and everybody has those things. So you might look at a child and a book and say for you, you know, listening to a story might be really easy. Like, well listen to it, you can understand it really well. But sometimes these words on the page can be hard to read and ask them, you know, what happens to you when you read? So what do you feel like your brain is doing? And to get in that conversation with them?

Sometimes kids have said to me, oh, it’s like my brain gets stuck when I try to get to a word I don’t know. Or the words are floating, you know, something like that, like there are a lot of them who will have these kinds of comments and talk to them about the fact that there are strategies we can use to help you. And so there’s research, we know that we can actually teach you to read so even though this is hard for you now, there’s hope. So not to feel as though we don’t know. And that’s I think what’s great about dyslexia is that we do have such a large body of research to help. So I think that’s one thing.

But I do think even for younger kids, we can start thinking about self advocacy as well. So even saying, like when you don’t know something, or we don’t get to a word you don’t know, do you close the book? You know, can you raise your hand? What things can you do? And so even for a child who’s in first or second grade, we can start to think about those things. Obviously, as the child gets older, we can really talk more about, you know, what are the options? What’s working for you, can we transform some books into audiobooks? Can we use a scribe and so on? So there’s a lot more of that self awareness, but overall, I do think that self advocacy piece is really critical.

Lauren Clouser, Host

Definitely. Well, that’s a great point that you can start really young with self advocacy. And you know, it can get more complex as it goes on. But no, that’s a great point. So what is the importance of having these conversations with children about their learning disabilities? Are there any studies that support that these conversations have a beneficial impact?

Dr. Rebecca Rolland

Right. Definitely, yes, well, there’s a couple of things, for example, that we really know. So one is that children with learning disabilities are at risk for a lot of social emotional difficulties, including depression, anxiety, and low self esteem. And a lot of it has to do with this sense of locus of control. So they feel as though a lot is out of their control. And they don’t really know enough ways to cope. And so I think a lot of the research I’ve seen on this is really powerful in bringing back students that locus of control where it’s more internal, meaning that they actually can make a difference in their lives, they can make a difference in their reading or their writing, they can help themselves become better at school.

There was a really interesting study, actually, at Hebrew University in Jerusalem, that did a six year evaluation. And it really found that this study was really trying to teach children or students to empower themselves. And it really found that by empowering themselves by discussing the options, it improved their self esteem and reduced their stress and anxiety. And I think that is really key because we don’t always see how much these social factors inform how well students are doing. And then vice versa, how much that you know, student’s performance or their skills impact their self esteem. So I do think it can be either a positive spiral or negative one. And I think the conversations help turn it towards that more positive side.

Lauren Clouser, Host

That’s so true. And to expand on the social challenges that individuals with LD can face, can a parent start to have conversations that can encourage resilience and empowerment? And what would that conversation look like?

Dr. Rebecca Rolland

Definitely. Yeah, so I’ve been working a lot on these questions of how we can support resilience with students with learning disabilities and even conversation starters and questions you can ask And so I’ve written about some of them. But I can even suggest some now, for example, if a student is or your child is struggling with, you know, reading, say, and they say, Oh, I’m just terrible at reading, I’ll never get there, you know, I’ll never be able to read. So obviously, this is kind of catastrophic thinking and black and white thinking where it’s, you know, either good or bad. And so really to help them involves seeing a lot of those gray areas, seeing the nuance. So for example, well, is everything about reading bad for you? You know, what parts of reading are actually working for you?

And we know that, for example, a lot of students with dyslexia or other LDs may have very strong comprehension. So even though their decoding might not be completely adequate, they’re still able to get a lot out of the material. For others that’s not necessarily true. But to really find the nuance and to help your child find their strengths, even within the difficulties, is really important. And one question I often ask is, well, what else is true? So even if a child is saying, well, this is bad, this is bad, okay, well, what else is true? And something else positive might be true? Well, that might be difficult. But what else is actually positive?

Another thing I found very helpful is to actually help children visually chart their progress. So a lot of teachers would, you know, use these kinds of methods of oh, you’ve read this many books, you’ve done this, and I don’t suggest going that far. But I do think when we can check in with our child or children about, you know, how much more are you able to understand, how much more are you able to read. They really do find that often very empowering when they see that their skills are improving. So I do think that we can’t improve self esteem without actually improving skills as well. So I think if you can work on both of those, that’s the key to resilience, is helping children see their progress and set goals for themselves.

Lauren Clouser, Host

So some parents might not feel, or even educators may not feel like they’re equipped to start these conversations with their kids. What would you say to them? And what would you recommend getting these conversations started? Are there some good conversation starters?

Dr. Rebecca Rolland

Definitely, yeah. So I think one thing to recognize is that it’s very typical to feel fearful about this, because there is so much stigma. If you look at their most recent State of Learning Disabilities Report, it’s you know, it’s so surprising to me still how much we still often think about, for example, LDs are a result of laziness, or, you know, if a child just tries harder, they’ll recover, they’ll be able to do the work. So it’s just a matter of not trying hard enough. And these are just heartbreaking misconceptions, because they really do make it so difficult to feel as though we can have open conversations without blaming or without shaming. And so I think parents can realize just to break that stigma is a great start with kids.

So to really say, you know, this isn’t a result of you not trying hard enough, I know how hard you’re trying, I know that you want to do this, and to even start there and build a foundation of bonding with your child over it. Rather than feeling as though oh, this is really scary, or oh, you know, I shouldn’t talk about this. And the second thing, I think, is to realize that kids have so many emotions, often that they don’t talk about, because of the stigma and so many kids are longing to talk about these things, and they really just want to be heard.

So I think even if parents don’t know what to say, even starting with just, you know, well, how are you feeling about it? Well, you know, what did it feel like to you to hear about this diagnosis? And to even model how it felt to you, you know, so I was kind of wondering what the difficulty was, and for me it felt a little surprising, but now I feel like I can help you better. To actually sort of verbalize those thoughts can really help bring you closer together as well.

Lauren Clouser, Host

Absolutely. Well it sounds like it kind of goes back to what you mentioned before too is that the parents can do some research ahead of time to sort of get any preconceived notions out of their head and be ready for that conversation as well to bring a more positive influence into the conversation.

Dr. Rebecca Rolland

Exactly. And there’s some great websites out there. So I think that if you are just looking for information that is really helpful, just to really start, there’s Understood.org and other websites that I think are really great resources, if you’re not sure where to go.

Lauren Clouser, Host

Absolutely. So do you have any recommendations on what you should keep in mind when having these conversations so they don’t sort of turn into a one sided conversation or even confrontational?

Dr. Rebecca Rolland

Definitely, yeah. So I think the key is to really recognize that the back and forth is needed, so that we want to, I talked about an approach I called Rich Talk in my work, where we’re really thinking about what I call ABC. So the A is to just be adaptive. So to really think about in the moment, noticing a child’s moods, noticing their temperament, sort of when do they want to talk, when are they open to talking?

And B is that back and forth. So recognizing how much we are talking versus how much this is our child talking. And I think especially when talking about LDs that it is so important, because sometimes we don’t think about it. But a child may have a drastically different understanding of a diagnosis, for example, or of their challenges than we do. Sometimes, for some kids, especially younger kids, have no awareness that they were struggling with reading. So for them, they were doing fine. And I’ve seen this especially, for example, with multi age classrooms that you know, a child who is the youngest in a multi age classroom may not have any idea that their reading is below grade level or is, you know, is a problem or is a difficulty.

And so for them approaching that conversation looks very different for them. For example, a child who’s in fifth grade who has been really struggling with reading for three or four years. So actually recognizing and just saying to a child, well, how do you feel about your reading, but how’s it going for you these days, and letting that be an open conversation.

So having that back and forth is so important, to not just assume that we know what a child is thinking, and the theme, so the ABC, the C is actually child driven. So it is really to focus on what a child is worried about, what a child is thinking about or even excited about. And so for example, if a child feels like, oh, reading is just so difficult for me, Well, are there subjects that are more interesting? Are there formats that would be more interesting?

So really, to follow the line of your child’s motivation can be so important, and I often think, with parents about not necessarily becoming your child’s teacher, so a lot of times it feels as though the parents, you know, feel very anxious and feel, oh, I need to try to teach my child, I need to fix this. Whereas I think what can be so helpful and so important is just to say, well, let’s try to make this, whether it’s reading, writing, or any other type of schoolwork, a warm and bonding experience. So how can we make reading feel like an enjoyable experience?

And maybe that means the parent reading to the child, maybe that means taking turns reading, you know, maybe it means a variety of things. But I think to be a little bit flexible about that, and to not feel as though it needs to come from a place of panic, but can rather feel like oh, this can actually be you know, reading is a complex thing. And we can approach different aspects of it with a child.

Lauren Clouser, Host

Absolutely. How early can you start having these conversations with your children? Is there a right age? Or can you really start at any age?

Dr. Rebecca Rolland

Definitely, yeah. So I really think you can start at any age, obviously, I would think, you know, a child probably should be experiencing some difficulties or something like that before you have this conversation. But I really do think conversations about how we think and learn differently can start even before a child has any kind of diagnosis. If a child is just learning to read and is a typical learner, you can have these conversations and talk about, you know, well, yeah, some words are hard for you.

And even some words are hard for me to read, you know, and actually, what’s really funny is we, my family, I actually have two kids, ages five and 10. And we start together to play the spelling bee, which is a New York Times like an online game where you come up with words, there’s like six letters, and you come up with words. And it’s actually been really interesting, because as part of that we talked about, you know, do you know that word? Well, you know, I don’t know that word, even sometimes, well, your dad doesn’t know that word, you know. And so I think to recognize that we’re all growing and learning and even some adults, you know, have challenges with certain aspects of things or don’t know everything about language is really important, I think, for kids to hear.

Lauren Clouser, Host

Do you have any tips for getting adolescents to open up in these conversations? Sometimes, you know, they might not be as open?

Dr. Rebecca Rolland

Definitely. Yeah, so I’ve definitely seen that. And I do think, sometimes I found a lot of success and talking with parents about supporting kids to start with something they feel good about. So this might been actually helping your child or inviting a child to teach you something that you authentically don’t know about. So oftentimes, we may start wanting to probe or wanting to get more answers out of a child. And sometimes that can be really frustrating, obviously, because the child shuts off further and doesn’t want to speak. So I think if you kind of flip the situation a bit, and give that control back to a child, and also offer them a sense of mastery.

So allow them to teach you, you know, is it a basketball move? Is it something about a video game? Allow them to kind of show you something, maybe it’s something very active, so you actually go outside and do something together. That can be a really a way of opening up a conversation before you start talking about anything specific. It just gives the child back the sense of control and the sense of showing you, you know, here’s something I’m proud of, here’s something I can do. And so then you can move on, you know, just talk about things that might be a little bit more challenging. Sometimes I really get the sense that we focus a lot of times on deficits without starting with, well, let’s see what your strengths are. Yes, there are obviously challenges. And we’ll talk about those too.

Lauren Clouser, Host

Absolutely. Would you be able to tell us about what you’ve been working on lately? And tell us a little bit about your book?

Dr. Rebecca Rolland

Definitely. Yeah. So I’ve been really excited about this book, because it’s actually out now in the US, but it’s going to be out in, I think, 11 international territories as well. So it’s being translated into Chinese and Spanish and Japanese and other languages. So I’m really excited to get this message out to educators, parents and related professionals. So that’s really what I’ve been working on. And especially what’s been interesting to me is I’ve been doing professional development based on the book as well. So actually working on how do you develop empathy, for example, in students through conversation, how do you develop kindness, confidence, and so on? And I’m working, especially with teachers, to think about how does this integrate within a curriculum, because obviously, these things can feel very abstract and big. So I think it’s really important to actually say, well, let’s actually sit down and figure out how these things make sense within the context of a state or local curriculum as well.

Lauren Clouser, Host

Absolutely. Well I’d love to expand on educators and creating empathy. Do you have any conversation starters, or any tips for educators, maybe to help other students who don’t have an LD to sort of have empathy and understanding for somebody in their classroom who does have a learning disability?

Dr. Rebecca Rolland

Yes, definitely. So I think, I think a lot about that, especially in how to make an environment and a culture where everyone feels welcome and supported. And the first thing I really do is draw a lot from principles of Universal Design for Learning, which is, you know, I don’t know how many listeners are familiar with that. But it really is a method of learning where we open up the way that we access curriculum, the way that students respond to it, and the way that students are actually engaging with it.

So for example, you can allow students to, for example, write a poem about something, you can have them record something, you can have them, you know, use a video to respond. And I like to do that as part of an exercise in empathy, because I start there. And then I really allow students to talk about, well, what was the experience like for you? Well, how do you think you learned best? What is hard for you? Why did you not choose the other option?

And actually having students, whether they are typical learners or whether they have LDs, talk about that, it really opens us up to a conversation to say, yes, all of us have our own unique ways of approaching things, we have our own unique ways of responding. And it’s really exciting and interesting to celebrate those differences. So I think that’s what’s so key is to create an environment where we feel glad that there are so many different ways of responding that there are people with different strengths with different challenges in the classroom. And that I think, creates a really strong foundation for empathy.

Lauren Clouser, Host

Absolutely. Well, and how can our listeners follow what you’re up to and connect with you?

Dr. Rebecca Rolland

Definitely, yeah. So I have a website, which is just rebeccarolland.com. Two C’s in Rebecca and two L’s in Rolland. And so they can find me there. I also have a weekly newsletter, where I’ve been writing tips and sort of suggestions and things like that we can find on my website as well. And obviously, you can look for my book, if you’re interested in reading that, which is available through all the major bookstores.

Lauren Clouser, Host

That’s great. Well, is there anything that I didn’t touch on that maybe you wanted to talk about, or any last notes for us to end on?

Dr. Rebecca Rolland

Yes, I guess one thing I would say is, it’s interesting that I wrote this book before the pandemic. But I think now, especially given so much isolation, so much anxiety, stress, and burnout of students and teachers, I think that the importance of these conversations, it’s kind of more now than ever. And so I really do think that even if you can start small and try out a few of these conversations and conversation starters, I think it’s so important for students at the start of the year.

Lauren Clouser, Host

That’s a great point. Well, thank you so much. This was such a great conversation.

Dr. Rebecca Rolland

Oh, thank you. I really appreciate it.

Lauren Clouser, Host

Thank you for listening to the LDA podcast. To learn more about LDA and to get valuable resources and support, visit ldaamerica.org

Early Identification and Evaluation

Heard on The LDA Podcast

In this episode, Dr. Vincent Alfonso, psychologist and Professor in the School of Education at Gonzaga University, discusses why early, accurate identification is so important, what developmentally-based evaluations typically entail, how early a child can be identified with an LD, and why universal screeners for learning disabilities are so essential.

Read the Transcript:

Lauren Clouser, Host

Welcome to the LDA podcast, a series by The Learning Disabilities Association of America. Our podcast is dedicated to exploring topics of interest to educators, individuals with learning disabilities, parents and professionals to work towards our goal of creating a more equitable world. Hi, everyone. Welcome to the LDA Podcast. I’m here today with Dr. Vincent Alfonso. He’s a licensed psychologist, Professor in the School of Education at Gonzaga University, and the second vice chair of LDA’s board of directors. Vinny, thank you so much for being here.

Dr. Vincent Alfonso

My pleasure. As always, thanks for asking.

Lauren Clouser, Host

So to start off, could you tell us a little bit about your experience in early identification?

Dr. Vincent Alfonso

Absolutely. It was really something that area I kind of fell into, I was looking for work after completing graduate school, and I worked in a school district for a couple of years after, a K-12 School District. And then the school district I was at we actually entered what’s called austerity, which is just a fancy name for layoffs, and people needed to be cut. And so they cut my hours, and I really wanted full time work. So I called upon some colleagues, some friends actually who I had gone to graduate school with who had entered the early childhood world, early childhood education, especially children, young children with suspected disabilities. And that was, and then it just was all on the job training.

And I learned, basically, by doing. I had really not assessed or evaluated any young children. But boy, did I learn fast. And then it became became a passion for me, I mean, not only in practice, and assessing, evaluating, you know, hundreds and hundreds of, you know, 2, 3, 4 year olds, but also then starting to write scholarly writing on early childhood assessment, evaluation, intervention, and so on. So I do have a fair amount of experience working with young children, it is from the past, but I still believe that much of what what I learned in the past and by continuing to read, and learn as a lifelong learner, I think that I’m pretty well tooled to talk about early childhood education and identification intervention and so on.

Lauren Clouser, Host

So LDA advocates for early intervention, could you tell us why early, accurate identification is so important?

Dr. Vincent Alfonso

So let me, you know, I think we can think about multiple challenges in life, physical, mental, you know, otherwise psychological, medical disorders and so on. Almost all science that’s related to health related fields indicates that the earlier the better, right? So the earlier we identify Alzheimer’s, the earlier we identify different cancers, the earlier we identify anything, including learning disabilities, intellectual disabilities, developmental delays, the earlier we intervene, the higher the probability of success, whatever success means, but typically, we’re probably not going to prevent certain things from happening, but we can certainly ameliorate whatever people are feeling and experiencing. And maybe, you know, in some cases, we will be able to take care of whatever the issue is.

Certainly, I think when we intervene with students, children who are learning how to read, the earlier we do that we do absolutely increase the chance of those students learning how to read and then being successful online. So there’s research that’s been out there now for decades and continues to accumulate that early intervention works, at large. And that’s why we need to continue to advocate for policies for funding, for bipartisan support of early childhood education and intervention in the United States. Some people argue that Head Start was not successful, I would argue that it was and is, and probably one of the most successful early childhood education programs in our country. It’s had ups and downs over the decades, but it’s still there. And then when we talk about IDEIA, the Individuals with Disabilities Education Improvement Act is a continuation of federal laws and regulations that began in 1975. For children, students suspected of having some kind of learning challenge or behavior challenge that precludes them from learning subject matter, reading, writing, math, speaking, written language, that we are absolutely clear that early works. The earlier the better. And I’m very optimistic that we’ll continue to gather more research, and also advocate through organizations such as LDA, and others, for young children.

Lauren Clouser, Host

Absolutely. Well, and you said early, how early can somebody be identified as having a learning disability or be evaluated?

Dr. Vincent Alfonso

So I am probably a little bit more conservative in my thinking about this than some others. I think that…so learning disability, it’s a learning challenge, right? So it’s like reading, it’s writing, it’s math. Well, if you haven’t been in school, it’s pretty difficult when you haven’t been exposed to academic matter. And I’m very passionate about young children not being too exposed to academic matter very early on. I think that there are other domains, developmental domains that are as important, if not more important, such as self regulation, attention, behavior, healthy behavior, independent functioning, and so on. I think those are all as important, if not more important. But in our country, we have really, in my opinion, I think, rather than helping our young folks learn, I think we’ve kind of taught them how to be anxious, and that we pushed a little bit too hard for early academics.

Having said that, I think that what we can do instead of racing or kind of going too fast in diagnosing or classifying learning disability, what I do believe in wholeheartedly and I think this goes along with early childhood education intervention, is we need to be screening every young person, student, child, even as early as, let’s say two or three, and continuing on a regular basis, and identifying those young folks who are struggling and having some challenges, and then reallocating resources to and for those children, those students. And I think we would be in a much better situation if we were able to do that. So I’m a big fan, a big supporter of universal screening, developmental screening. I mean, we have babies and young infants, toddlers, they’re all screened for hearing and vision and all kinds of potential medical challenges, so I think that that’s what we should be doing for all of our kids very early on, and involving the family, involving caretakers, and working with the families, especially families that come from low resource environments, in really helping them understand the developmental status of their children, why we’re doing what we’re doing, what they can expect, how is this going to help them help their children and then as they navigate through the educational system in the country.

So, you know, the more direct answer is, we really should be screening and doing the developmental screenings as early as possible and on a regular basis to determine which of our children need help early on. If you’re talking about a learning disability, an actual disability, you know, I think if there’s a history of trauma, or if we have chromosomal data, that, you know, maybe a young person has Down syndrome or fragile X or one of the other chromosomal disorders, then, I think we know a lot that those folks are going to have some learning challenges and may actually eventually be classified as having an intellectual disability, or maybe a learning disability.

If none of that exists, then we’re probably talking about kindergarten, we can start to see maybe some signs, but again, development is rapid early on. And there’s lots of changes that take place from three to four, four to five, five to six years of age. And so, you know, I’m personally not so comfortable with classification or diagnosis of a learning disability at a very young age. At the same time, if we have some clear data, or the data is absolutely clear that there is disability, then I would never want to not provide or have that student receive the services that is his or her right to receive as part of a free appropriate public education. So long winded answer, sorry, but it’s just not that simple. And there are people out there who think that everything is simple and this is not. And so that’s what I would say, developmental screening early on, follow the young folks who are having difficulties and having challenges, intervening. And then if they continue, if we’ve provided them with lots of interventions and they continue to have difficulties, and we do a more comprehensive evaluation, and we find that there is enough evidence for weeks for meeting the criteria for a learning disability then, by all means, I think we should follow through with that as well.

Lauren Clouser, Host

When you mentioned a developmental screener, does that differ from a typical screener? Is that because they’re younger? Could you touch on that one a little bit?

Dr. Vincent Alfonso

So for me, developmental screener covers, which probably should be a comprehensive developmental screener, although that might sound like not exactly clear either. But when I mean a developmental screening, I’m talking about multiple domains of functioning. So I mean, certainly you could do a vision and hearing screening, right, that would be screening as well. And that would be obviously, assessing, evaluating sight and hearing, but what I’m talking about is, you know, typically, it’s like five big domains including either cognitive or pre-academic, speech language, or sometimes it’s called communication. We’d have motor functioning, gross motor, probably fine motor as well. Something called adaptive behavior, which is you know, independent functioning and becoming more and more autonomous as students age, and then social emotional functioning as well, so interpersonal skills some people want to call it social emotional learning, that kind of thing.

There are many commercially available comprehensive developmental screeners and evaluations. In fact, many of the tools that we have that are comprehensive have a screener built into the instrument so that you give a subset of items in each area that constitutes the screener part. And I think screeners are great, especially if they have good properties, psychometric properties, and also that they provide meaningful information. You know, I think that screeners can be administered pretty quickly. And you don’t have to use a commercially available one, I mean, I’m also very supportive of local norms and local screeners. So in other words, you know, a team of professionals in a school district can develop one on their own, administer it and see how it works in their district, because, you know, there’s this old saying that all politics is local, well, all education is local too.

So back to those commercially available ones, they do have these built-in screeners so you can do the screening. And then if you find that some of the kids have some challenges going on, then you can use the same instrument and go further and have a fuller evaluation in each of those areas and use the same instrument. So you have a lot of consistency, I think, built into that. So I’ve done both. I’ve used commercially available ones, I’ve used ones that the district came up with, and so on. Here’s the challenge, and what I found, and maybe it’s not true anymore, but it’s kind of clear that it is.

First of all, we don’t do it. Many, many places across the country, and many school districts don’t do screening, they don’t do developmental screening, and they certainly don’t do these thorough kinds of screenings. There are some that do, and the challenge there is that they don’t follow up. So okay, we’ll do the screening, we’ll collect the information, the data, but then it kind of sits somewhere, and there’s not a follow up or follow through. I think the ones that actually do the follow up or follow through probably have the greatest probability of success in helping these young folks be successful in learning. You know, even if they continue to have difficulties, we’ve been able to work with them early enough so that there isn’t a domino effect. Because sometimes, maybe more than sometimes, if we don’t intervene early and students are continuing to be promoted socially or otherwise, but they’re not doing well, there’s a greater probability that they’re going to be turned off to school, and they’re not going to like school. And then it’s like the hole gets deeper and deeper. And then that makes it more and more difficult to help. And then it’s not uncommon for students with learning disabilities to also have social emotional challenges because of that, so again, the earlier the better. We know what to do, I just don’t always understand why we’re not doing it.

Lauren Clouser, Host

Did we always know that we could identify LD this early? Is there, could you touch on some of the research that has been surrounding early identification?

Dr. Vincent Alfonso

Sure. So I mean, you know, it’s really not that long that we’ve even had IDEIA, or, you know, really the former, the precursor, which was 1975. So if you think about it, you know, what are we, 45, 47 years into free appropriate public education. And it wasn’t until 1986 that we were looking at the toddler ages, three to five, and it wasn’t until 1990 that we were looking at birth to three. So we have not been inclusive until really pretty recently. And so we kind of know other than Head Start, and then Early Head Start, we really weren’t, again, in my opinion, paying that much attention to the youngest members of society, and I think we’re paying a lot more attention now. And that’s a great thing.

And Part C of the federal law and regulations IDEIA addresses early childhood, and there’s a child find component to it, and so on. So, I think we’re much more attune to young children and what’s going on. But we’re still we’re still learning, I think there’s a veritable, just incredible amount of recent research and data from neuropsychology, neurology, and other fields that is really providing us with insights into how the brain develops, and the plasticity of the brain, and so on, and so forth. And also a great amount of research on, you know, low resource environments and poverty and how environmental factors, toxins that are in our land and in our water, and so on, so forth, that, you know, might be having a negative effect on the young brain development, and so on. So, you know, there’s a lot more attention. And, not that this is always only about money, but if we invested in early identification, early intervention, and so on, we would be, as a nation, saving, not millions, but billions of dollars.

Because, again, it’s not just education and school, but this is also the developing body. This is medical, physical, right? It’s everything, and then the payoff down the road, because the longer we can keep kids in school, enjoying school and learning, then we increase the probability that they’re going to contribute to society by finding work and so on, so forth. So it’s kind of common sense. Just makes a lot of sense to me, and to many other people. And I am optimistic and very glad that we are as a nation investing in young kids and young children and their families. And I think we just need to keep doing that. Integrate the research and the science and also having a very, very humanistic approach. I mean, families must be involved. They must be involved in the early education of their kids.

Lauren Clouser, Host

Absolutely. So what are some signs in younger children that may indicate a learning disability? I know you mentioned it can be hard before they enter an academic setting. But in your experience, what are some signs that can maybe lead to a learning disability diagnosis later down the road?

Dr. Vincent Alfonso

Again, it is difficult to say. Again, I think doing good screenings early on, and multiple domains of functioning, seeing how a particular child compares to other children his or her age. You also want to know if you can sense or pick up…I guess one of the biggest signs would be speech language challenges, delayed language. I think that’s a big one. Certainly, you know, motor. Really, all the areas of functioning we see that there’s some kind of delay going on. And certainly, I think if there’s one area of delay, that’s one type of situation, right? If there are multiple, then you have another situation, right. And so, do I have hard data on that? No.

But again, common sense if there’s a delay in one developmental domain, but all the other domains are okay. You know, let’s intervene in that developmental domain. Let’s see what happens over time. But if you’ve got, you know, a young person who has multiple areas of developmental delay, you know, we want to pay very close attention to that child. And, again, I just think it’s, we as a nation are used to bringing our young children to the pediatrician, right? They get their early shots and vaccines and so on. And we’re checking their hearing and their sight and everything well, why aren’t we checking early learning, behavior, social emotional, and so on. So I think if we can engage in that, make that part of our culture and our society, the way that we work with our young people, I think we’re going to be much better off. Yeah.

Lauren Clouser, Host

Would you be able to speak a little bit about the difference between the possible signs of a learning disability or ADHD or behavior that’s just developmentally appropriate for a child?

Dr. Vincent Alfonso

Yeah, it’s another challenging question, and especially for young parents, you know, parents who it’s their first child, or, again, families from low resource environments, and they may just not have a good understanding, but it could be for anyone, right? You know, your first time parent, you have no idea what to expect, there is no book. There’s no book on parenting, necessarily what to expect and so on. I know there’s that famous book, like what to expect in the first year or something. But I think I get really passionate about this, because I think, some, maybe more than some, professionals working with young kids just have too high of expectations.

And, you know, I worked in preschools for a long time. And I can tell you stories all day long about being a child advocate and engaging in what we call the consultation, but I was just like fighting other professionals, who I thought were just trying to make kids do things that’s not natural for them. We had something called instructional naptime. And I was like, I’m really not sure what’s instructional about napping, and why we’re forcing our kids to nap. Because all that does is set up a fight with the kids, or battle with the kids. Other things, like, we’re sitting around the table and it’s circle time, one of the kids wants to stand up, instead of sitting down. “Oh, you must sit down.” I’m like, this is not the army. It’s things like that that make me absolutely wacky, you know?

And why do I bring those up, because I think what’s developmentally appropriate, I mean, kids want to play, they want to roam around, they want to do what they want to do. I’m not saying it should be that they can do anything that they want to do, but there should be some, within reason. So at young ages, many disorders, if you will, or challenges that might be indicative of different classifications or disorders, it’s very hard to tell early on, so I think it’s observation. We believe in a multi-source, multi-method, multi-setting assessment paradigm, right? So you want to see the kids in different locations, different settings, you want to talk to different people, you want to assess them via different methods as well. And then, you know, gather all the information and the data.

And I also think it’s very critical to be communicating with professionals from other disciplines, right? So I’m a psychologist, a school psychologist, but speech language pathologists are absolutely essential with young children, also having a physical therapist, occupational therapist. You really do need a full approach too, especially when someone is a young person suspected of having these challenges and difficulties rely a lot on the teacher and the parent. If they’re, if they’re concerned, we need to start to ask them questions and see what’s going on. But it is very common for us, as a society, adults in society, to kind of have these rigid rules about how children should be behaving and what they should be doing and not doing. We apply the rules to young kids, we don’t apply them to ourselves. It’s true, little, little pedestal talk there.

Lauren Clouser, Host

What is a developmentally based evaluation like, and what can a parent or caregiver expect that process to be like?

Dr. Vincent Alfonso

I think they vary, it depends on where the assessment or evaluation is taking place. It could be at the child’s home, could be in a preschool or daycare or nursery or in different settings. It’s best if the parent or the caretakers are around, in my opinion, and takes part in the process, multiple domains are assessed. If you can, we used to do at times, where you’d have psychologists, a speech language pathologist, and maybe one of the motor professionals, you know, fine or gross, in the same room, because oftentimes we’re looking at the same kinds of things. So you could have an arena-style assessment, there’s play based assessment, there’s all kinds of different ways of doing it.

But I think involving the family, gathering information from the family, having the family a part of the process, multiple domains of functioning, using good, sound instruments, then writing a report that’s parent friendly, or caretaker friendly, that’s very clear about the interpretation of the child’s functioning or performance, I should say. And then having written recommendations that are doable, feasible, very clear to the parents and to any other adults who are interacting with the young child. So I think, you know, it’s something that I really enjoy, I greatly miss it. And sometimes I hear what’s going on in the field and it makes me sad. Either we’re not doing good evaluations, or we’re not doing them at all. You know, we don’t always involve the families and the families have to be involved, as much as possible. So I think that’s probably a good overview of what that would be like.

Lauren Clouser, Host

Well, to expand on that a little bit, we’ve touched on universal screeners why they would be so important, and the importance of following up on those screeners and tracking those kids. What needs to be changed to make these early, accurate identifications easier and more likely?

Dr. Vincent Alfonso

Well, I’m gonna say it’s probably really good educational leadership. I think that school districts, superintendents, and principals really need to believe in early identification and working with families that have young kids, and then that universal screening. I mean, I just think it needs to be in place, you know, it’s done at a certain time of the year, and this is the team that does it, it really is an investment. And it’s not, it’s clearly not a big investment, in my opinion, and the payoff, if you will, in so many ways, it’s so big, it’s so large. But it’s like, any kind of changes…first of all, change is usually met with resistance.

So, you have that, and then even if you do have some consensus or critical mass of people, then there’s all other kinds of challenges that are there, but I have no doubt that universal screening needs to be a part of the educational, the fabric of the school, or the educational entity, you know, it just, it needs to be a part of the routine, just like taking state exams or national exams or graduation pictures or whatever it is, right? It needs to become a part of the educational routine. And, you know, I want to believe that most people want this. I think that especially now after, and still, certainly affected by COVID 19, and the pandemic, and then you turn on the TV or the radio, and now there’s the trifecta of, you know, COVID, the flu and RSV, and, I mean, so you have a lot of a lot of that. And we may be…I mean, who knows, we may be in for a rough winter, in the country. So what’s my point? My point is that it’s very difficult, right?

Education, our schools, our teachers and other people working in schools, they’re the real heroes, in my opinion, and certainly many others, but they’re the unsung heroes. And I think that it’s very challenging to change the culture to include universal screening. I mean, there’s been a lot more, like universal Pre-K. And I think as the government and our US Department of Ed continues to support early childhood education and prevention, I think it’s going to get better and better. But I just have no doubt that we need to do early, regular screening and intervention to help those kids but also to alleviate the pressures on the systems later on, because they only become greater and greater. And it becomes more and more difficult to help those students enjoy school and see the benefits of continuing in school. Otherwise, there’s a likelihood of dropping out. And then other challenges that are much bigger in life.

Lauren Clouser, Host

Thank you so much for sharing your expertise and your experience. And I think we had a great conversation as well.

Dr. Vincent Alfonso

I appreciate the time and the questions, it makes me think. I hope I was clear and certainly happy to follow up if anyone has questions or if there’s a need for a follow up podcast or whatever, happy to help and hope people find some of this information at least thought provoking. Even if people get angry at least, at least there’s an emotional reaction, right? So I appreciate the opportunity to help out.

Lauren Clouser, Host

Thank you for listening to the LDA podcast. To learn more about LDA and to get valuable resources and support, visit ldaamerica.org

Discovering Dyscalculia with Laura Jackson

Heard on The LDA Podcast

When Laura Jackson found her daughter had dyscalculia, she learned as much as she could about the SLD for six years. After her difficulty finding resources, she created a website and blog called Discovering Dyscalculia to help others to find the information she didn’t have at the time.

In this episode, we sit down with Laura to discuss her family’s journey, how dyscalculia affects far more than just math class, strategies for math instruction, advocacy, the importance of community, and much more!

Read the Transcript:

Lauren Clouser, Host

Welcome to the LDA podcast, a series by The Learning Disabilities Association of America. Our podcast is dedicated to exploring topics of interest to educators, individuals with learning disabilities, parents and professionals to work towards our goal of creating a more equitable world. Hi, everyone. Welcome to the LDA Podcast. I’m here today with Laura Jackson. She’s a writer, advocate and mother of a child with dyscalculia. Laura, thank you so much for being here.

Laura Jackson

Yes, it’s my pleasure.

Lauren Clouser, Host

So to start off, could you tell us just a little bit about yourself?

Laura Jackson

Yes, as you said, I am a mom, I have two daughters, a preteen and a high schooler. And our oldest daughter is dyscalculic. We discovered this about six years ago, when she was in elementary school. So we live in the Seattle area in the Pacific Northwest and a couple years ago I quit my job and have been pouring myself into work supporting families and individuals with dyscalculia.

Lauren Clouser, Host

Amazing. So for our audience who may not know, could you tell us what dyscalculia is?

Laura Jackson

Yes, you probably recognize it on an IEP or just in conversation as it’s usually termed a specific learning disability with an impairment in math. Or people might call it a math learning disability. I know I have a lot of parents who will reach out to me and say, ‘my child has a math learning disability, but I don’t know if they have dyscalculia.’ And just to clarify, yes, as of how things are right now, that is dyscalculia. So it’s known as a learning disability, which I have a little qualms with the term ‘learning.’ Because I think it kind of implies that it just impacts individuals when they’re in school. But having a learning disability in math impacts so many different areas of life, and it’s also something that you have or that you struggle with your entire life. So it’s a real difference in how not only they work with numbers, but how they experience and visualize numbers. So it impacts math, yes, but it impacts really everything involving numbers in life.

Lauren Clouser, Host

Yeah, and I’d really like to dive into that with you later. But first, I wanted to talk about how you learned about dyscalculia when your daughter was diagnosed, right? Could you tell us a little bit about that process?

Laura Jackson

Yeah, so my daughter was in third grade. And she was really struggling in math class. And I remember I had a conversation with an old friend, who I actually just got done interviewing a couple hours ago, she had a math learning disability. And she mentioned that to me, and I thought, ‘what is a math learning disability?’ I just didn’t know much about learning disabilities in general. And I had a lot of misconceptions about what a learning disability was, so it wasn’t on my radar. But after our lunch together, I looked up ‘math learning disability’ on Google and found the Understood.org website. It wasn’t quite as robust as it is now. But I found just all the signs and symptoms of dyscalculia. And I remember just being shocked, like, wow, this describes my daughter.

And I hadn’t really even pieced together all the different parts of math at that point that were difficult for her. What was standing out was that on the multiplication drill every Friday, she just could not get past the one times tables. And it seemed funny because she loves school. She’s very articulate, she was doing really well and everything else. And the teacher said to me, I don’t know what’s going on. But she’s trying 10 times as hard as everyone else, and not getting what we’re talking about in math and multiplication. So that was kind of my first clue of what was going on.

And so from that search, one thing led to another and I started just gathering any information I could. I met with the school, but they didn’t know anything about it. And their suggestion was let’s wait till next year and see what the teachers have to say. And the more I read, the more I thought well, that’s not going to work, that’s actually not going to help her to just put it off. So that’s when I started the process of getting an evaluation at school. And it was also recommended to me that we had a private evaluation done. And both of those confirmed that, yes, she was dyscalculic.

Lauren Clouser, Host

That’s really great that you were able to find some resources and recognize that this shouldn’t be put off, the longer often that people wait to get diagnosed the trickier it can get.

Laura Jackson

Yes, absolutely. Yeah.

Lauren Clouser, Host

And I wanted to talk a little bit about the resources that you found a couple years ago, are there a lot of resources out there for dyscalculia?

Laura Jackson

Well, there’s a little more now. But I will tell you, I think I checked out…we lived then in Seattle, at that point, so a big city, extensive library system. I checked out all the books on dyscalculia, and there were two of them. So I read those. And then it was really hard at that point. This was about six years ago, it was really hard to find information. Nobody at school knew anything about it. There were people that were kind of familiar with our kid’s struggles in math, but they didn’t really understand what that meant, or what to do about it. So it was a lot of hours of looking online. I did at that point, find some books by Ronit Bird out of the UK.

I remember it being very expensive, because I started at that point ordering books off of Amazon. And you know, they’re like $40 books, $60 books, just not something readily available for people. So I started just reading everything I could and growing my own library because it wasn’t available at the public library, and no one that I knew knew much about it. So that was where it started, was basically growing my own library of books.

Lauren Clouser, Host

Wow, there really isn’t as much out there. I mean, especially if you look at resources for dyslexia, you’re gonna find so much more than dyscalculia. So that’s just huge. All the different outlets you had to go through to get just a couple of resources.

Laura Jackson

Yes, yes. I found a couple of YouTube videos. There’s a TEDx talk in Denmark with Line Rothmann, which you probably know about, and I’m trying to think I think there might have been another one, but there wasn’t…I wasn’t finding as much. Looking back, I did find some early work of my favorite dyscalculia expert, which who is Brian Butterworth in the UK. He’s a professor at the University College London. And I have since now found some videos that were available back then. But for some reason, they just weren’t coming up when I was looking. So yeah.

Lauren Clouser, Host

So what are some common signs of dyscalculia? I know that you mentioned with your daughter in particular the teacher even noticed that she was trying 10 times harder and it just wasn’t clicking for her. So what are some signs that parents can look out for?

Laura Jackson

Yeah. So that struggle or inability, like we mentioned, of not being able to learn the times tables. Also with that she struggled….we would have tears over flashcards, you know, working on simple addition and subtraction. She was able to do addition by counting up, but just couldn’t make the connection with subtraction and didn’t understand the concept, and couldn’t imagine something being ‘taken away or minused.’ So those were some of the signs. Now looking back, I can see that there were signs as early as kindergarten, a real lack of interest in working with numbers. And she would spout off these number sequences that sound fun, they sound kind of playful. And they were off, like missing numbers.

She was not able to count backwards reliably. She could do sections, but if you had to cross a decade line, like 21, 20, 19 like couldn’t do that. In first and second grade she started…the teachers said you know, I think she could use some extra pullout help. So she had two years in second and third grade of small group extra instruction and still wasn’t making progress. So extra help and still not tracking.

She really struggled with not being able to read an analog clock, she can now she’s 15. But for years, and I thought it was just, I remember yelling at her one day, ‘doesn’t the school teach you how to read a clock?’ You know, I had my own problems and just didn’t know what was going on. And not only reading a clock, but then being able to calculate the time. So if I say we’re going to eat in 20 minutes, she wouldn’t know what that looked like or what time that would be. And vice versa.

One big sign that I did not recognize early on, but is a real clear likelihood of being dyscalculic, is that inability to subitize. So I didn’t know that when she looked at a dice that she couldn’t automatically see there were three, or four, or five dots on it. So she was in her mind counting each one. And that’s why it took her a little while with dice when we played games to say, oh, that’s five. And I didn’t realize that. And she was terrible at Connect-4, the game where you drop the coins in, because she could not see that she was getting close to four, she didn’t know there were…she’s just dropping in things until it filled up. So that was a sign that I learned later. But I know other parents don’t usually notice that, like I had a mom in my workshop, she said, Well, my son told me that when he’s setting the table, he doesn’t just look over and see that there’s four glasses on the table. He actually counts 1, 2, 3, 4. And she had no idea that that was going on.

So my daughter counted on her fingers. And I know there’s people who like to debate whether that’s okay or not. But I think what I’ve learned is when that’s the only method available that can be assigned as dyscalculia. Not that you count your fingers, we all do that. But when that’s the only way they can add something up. It can be assigned struggles with left and right. And I know that can happen with dyslexia too, but no sense of direction. And oh, man, it’s just everything related to numbers like you think about the addresses on the street and how you know, you’re getting closer to your house because the numbers? Well, those numbers are so random to her. They’re just out of nowhere, and she can’t remember the sequence of telephone numbers. Remembering dates, dates are very confusing. I could really probably talk for an hour on that. But that just gives you a few.

Lauren Clouser, Host

Yeah, definitely. Well, and if you wouldn’t mind expanding to it doesn’t just impact a math class. Like you said, there’s some real world examples. Can it impact other subjects? What are some other things that it can also impact other than just math?

Laura Jackson

Yeah. So measurements, so my daughter has always struggled being in the kitchen. We use some tools, some visual measuring spoons, and cups now from Welcome Industries. And they give her a picture of what the item is instead of the fraction. But anything to do with measuring amounts or estimating…I share a story in my book of calling out across the house like a year ago saying, hey, how many chicken nuggets do you want for dinner? And she had to come into the kitchen because she doesn’t know that she eats about 8 to 10. Like she just…she had to see the actual pile and said ‘oh, about that much’ because she didn’t know, she didn’t have a number attached to that amount.

Her other classes, we have to notify all her teachers. So in social studies, so much of that is around numbers and like she doesn’t have a sense of like, when is 1751? Like she doesn’t have: ‘Oh, yeah, that’s you know, this is hundreds of years ago or that was a few years ago, or this is when my grandparents were alive.’ Like, she has no sense. And it’s also hard for her to remember numbers when they don’t have a context. So I looked at her social studies quiz recently, and this was in middle school. And half the questions were, what year was this built? How long is this river? When was the birthday of this person? Like half of it was numbers. And it was unfair because she really knew the curriculum. Like she could tell you why that landmark was important, even though she couldn’t tell you when it was set up. So that’s some things in social studies is that sense of time, of dates.

In all her classes she struggles with time and having to ask when is lunch? When is this happening? Because when she looks at the clock, it takes her so long to calculate first what time it is now. But if the teacher says in 20 minutes, it’s hard for her even still to be like, what will the clock say when it is 20 minutes? She’s in theater right now in high school, totally confused about upstage, downstage, left, right. She’s like, ‘Mom, I don’t know my left and right, and now we’re turning it around. And the left and right are opposite of what it is for me on stage.’ So that’s a nightmare. That comes up.

The other thing I forgot to mention early on is, so memory for numbers. So dyscalculics, they may spend a whole lesson and you think that they really got it, and you come back in the next day and the teacher is just flabbergasted because it seems like they haven’t remembered anything of what they just learned. A student will study and study and study, cram for a test, go in and fail miserably. They can’t hold on to these concepts that, in reality, don’t make sense to them yet. And so, you know, the parents are flustered, like, did you not study? Or that’s what you get for cramming. And it’s like, no matter if they studied every day for a month beforehand, they might go in and not remember.

We’ve experienced that a lot with our daughter, and she would sometimes just sit and wait, she would just and the teacher would say what are you doing? You’re not doing anything, She’s like, I’m waiting for the answers to come. Because in her experience, the numbers would come and go, like, sometimes the answer would be there. And sometimes it wouldn’t. And she didn’t know how to control that or make it appear when she needed to. So that’s one of the reasons the multiplication tables, memorizing those, it doesn’t stick. And the amount of memory they have for numbers is very small. So when we’re requiring that they learn and memorize as much as everyone else, they’re at a real disadvantage. And they have to, we have to really pare down what is required to be memorized.

And that’s kind of getting into the teaching methods, but just being aware that their capacity for memorizing anything related to numbers and quantity is very limited. It may be fine in other matters, you know, other subjects, but in math, the other subject that is really impacted is science. So they can do really well and a lot of aspects of science. But think about how much of those science classes have measuring and make you do calculations. And so those students who you may notice, they’re doing really well on all THESE tests. And then THESE tests, they’re doing terrible. What is it on those tests that they’re not doing well at? My daughter is in biology right now. And she told me, I totally understand the material, but she bombed this worksheet quiz, and it was all measurements. And we’re in the process of getting a copy of it, because I want to see it, because she probably understood the concept, but she makes a lot of errors when it comes to the calculation. So yeah, those are some other areas, at least for students.

And then if you think about adults, you know, reading and understanding spreadsheets at their work, or graphs, is very complicated. Driving, calculating distances, calculating time and distances, like you hear of adults where they have these jobs, they have to drive from place to place and they have meetings and it’s just a nightmare. And then you think about money, like all these aspects of money, understanding amounts and decimals and the calculations of it. In our country, our 10 cent dime is smaller in size than the five cent nickel. Just even that is confusing. And we don’t understand why can’t you remember that’s a nickel, and it’s like well, it’s very confusing.

Lauren Clouser, Host

That was great because you know, a lot of people just assume oh, it’s just math calculation. But you know, it really impacts anywhere that there’s numbers, which is probably more places than we realize in our day to day.

Laura Jackson

Yeah, and in my parent workshop, the first week is just understanding and the homework is that week to just notice how many places that numbers show up in your life, or calculating or amounts. And it’s just so fun hearing all the stories, they come back not even realizing the different places in their life where these things happen. And then trying to see it from the point of view of their dyscalculic, you know, spouse or child or whatever. Yeah, it’s, it’s very enlightening,

Lauren Clouser, Host

Yeah, that’s huge. So how did you decide on which learning approach worked best for your daughter, whether it was at home instruction or any sort of online tutoring?

Laura Jackson

Yeah, it was a real trial and error. We got an IEP and I remember just breathing a sigh of relief, because getting her tested was very difficult because she was doing so well in her other classes. And so the school was hesitant to test her. So it was a real push to get her evaluated. And I was so tired by the time we finished, and it was about like a year long process between the two evaluations. And I thought, well, now we’re all good to go. But the hard thing is the teachers had no idea how to teach a kid with dyscalculia. And the special ed teacher was really lovely and warm and willing to learn. But she had so many kids. And it was such a steep learning curve. So I was feeding her like Ronit Bird books that I would find, hey, do you think we could use this? And she was looking for curriculum online, I was too. We didn’t find anything specifically for it.

So for two years, that was our way of being, and that even included a separate school district where she received more time in special ed than the first one. But still, nobody knew how to teach her. So by the time she was in sixth grade, I thought we can’t keep guessing, like this is just not working. And by that point, I had been reading and learning and I found some methods of teaching coming out of the UK. And I met up with well, let’s see, I started with Ronit Bird’s online ebooks. They were hands on, she understood the unique nuances of dyscalculia. And so in our state, we have the option of part time enrollment at school. So what we did is we did math at home in the morning with this curriculum, and then I dropped her off at middle school for the rest of the day. And we have done that for the last three years. Pandemic year, there was one pandemic year where she was home, or we homeschooled, so she took a lot of online classes, basically online learning, and then math at home.

So I got some help from Emerson House, which is a school in the UK. And there’s also one in Virginia. And they really focus on students with dyscalculia, dyslexia, and dyspraxia. I got some help from them. And the methods were, I want to say there’s a method to the madness, there’s actual ways to think about learning for dyscalculics when you understand what are the unique challenges? And what are those gaps that they have that most students don’t have? So I think about her learning structure, and there’s like pieces of bricks missing and mortar missing, and we have to go back and start at the foundational level and fill in those gaps. And so that’s what we’ve been doing. We did it all through middle school for her.

And it was pretty exciting, because a few, you know, within a month of doing it, and I will back up and say I’m not a math person, I am not a teacher. I’m just a desperate mom looking for help for my kids. So I really just approached math class, like, let’s learn this together. I wasn’t teaching her. We just were like, let’s see how your mind works. And let’s find a way to understand math in a way that your mind works. And so we followed through Ronit Bird’s ebooks, and then we used Jane Emerson and Patricia Babtie’s book The Dyscalculia Solution, and just worked through those. And it was so exciting because she started saying to me, Oh, I’m ready for math class today, or I’m excited to do math class today, I love doing this math with you, mom. And she was also having these breakthroughs where these mathematical concepts that never meant anything to her were suddenly making sense.

I remember one day, we were building numbers. So one main thing with dyscalculics is not having a sense of numbers, not having a grasp on what makes a number a number. And how, as Professor Butterworth would say, they don’t understand numbers as sets. So teaching to…and it seems so basic, if you’re not dyscalculic you’re like, ‘well, of course,’ but when you’re dyscalculic it’s confusing. It doesn’t make sense. So, we were building the numbers with these different tools, Cuisenaire rods and dot patterns. And she got stuck. She built one through 10. And then she was like, how am I going to build, you know, 11, 12, 13, 14, 15? And I just was quiet. And she sat there for a minute. And she’s like, oh, there is a 10 in each of these numbers, plus an additional number. And she was 12. And she is just realizing this fact that we all kind of take for granted, but she had to experience it hands-on to see what that meant.

Because one of the things with dyscalculics is they don’t understand the idea of numbers as sets, and then other sets inside those sets, so that numbers are made of other numbers basically. So we had a really great, I would say, experience learning together. And we would get help from different places, but it’s really, you have to be okay with them forgetting and redoing it and being like that’s okay. Hands-on. Not requiring much memorization if at all, and learning through games and experiences and not drills, quizzing worksheets. So that’s what we have found to be most successful, and it’s really coming out of a small group out of the UK. The people I follow are Brian Butterworth and the late Dorian Yeo, Jane Emerson, Patricia Babtie, Steve Chinn, Ronit Bird, they actually all know each other. So funny. But those are the people I follow and that I have found materials that really understand the dyscalculic mind and how to help them gain that sense of number.

Lauren Clouser, Host

It’s really great to have. So how can parents advocate for their child with dyscalculia? I mean, you just advocated every step of the way. It was yes, we need an evaluation this year, to: this is what dyscalculia is, you know, it was almost a combination of educating and advocating at the same time. Lots and lots of work. How do you recommend that parents can even start that process? It seems really intimidating.

Laura Jackson

Yeah, I think it is. I feel like being in just this field of learning disabilities and differences, so many parents do find themselves in that role, even though they don’t want that role. I didn’t want that role. I’m not a controversial type of person, I don’t like to rock the boat. And now I’ve had to become very comfortable with rocking all kinds of boats and, you know, irritating people, for my child. And so it is hard. It’s not fun. I think finding community and others who are doing the same. So that’s some of what I am doing now is trying to build community. But I remember when I first started out, I remember looking around and just being like, well doesn’t anyone know anything? And I don’t even know how to navigate the school system. And so, a friend said, Oh, I think you should call this person. And I texted this mom out of nowhere, who had a daughter with dyslexia, and she had navigated the school system.

So it was just a really awkward text. Hi, my name is Laura. And I need help. And she was great because she helped me figure out how to navigate the school system. And she didn’t know about dyscalculia. But she knew how to get evaluated and how to get that process going. And several years ago we couldn’t afford tutoring, and there was some tutoring offered out of the Emerson House. And so we just had to kind of think creatively, I talked with them. Rob Jennings was there, and he’s with the Dyscalculia Network. And we kind of worked out, okay. Well, could you tutor me so that I can teach my daughter? So we did that and just kind of tried to think outside the box of ways of how I could get that help because I needed help. And then, to help navigate the school system, I would say I’m not necessarily the best. I mean, I tried for two years and the school couldn’t get what we needed.

And I jumped ship, because I’m just like, I don’t have time for that. But we’re back in the school system now. And, you know, continuing that advocacy, and also teaching our daughter to advocate for herself. So especially as she’s older, helping her have a voice is really important. And takes the pressure off me as a mom, but I think it will help her because that’s what’s needed going forward. So I guess to answer your question, see if you can find community. And I mean, that’s what you guys are doing with LDA. You’re providing education, resources. Hey, there’s people out here who call on my workshop I have, and I say, Hey, call your LDA advocate in your state, because they’re going to know some resources that you haven’t heard about. And I’ve done that in our state. And our representative, you know, had some names of places you could get evaluated that I didn’t know about. So yeah, find your community. Because you’re not alone. And it really helps you feel encouraged or bolstered, like, you can do this.

Lauren Clouser, Host

Absolutely. That’s really true. So in your experience, what are some of the strengths of individuals with dyscalculia? We talked about a lot of the weaknesses, but have you noticed any strengths that have come out of this?

Laura Jackson

I love that question. Because I really feel like that is one of the keys to supporting students with any kind of learning difference is to see the areas that, in my class I call it like, places where they shine, like seeing those places where they are excited, they’re interested, they’re really good at. And when you think about growing or developing as a person, like focusing on those things are so much more important than looking at the places of struggle and trying to fix those. So I love that question. And when my daughter was 10 I remember her standing on the front porch, and we were really right in the middle of…I think she had just received her diagnosis in the private eval. So we had already finished the school eval. And I remember she said to me, I know what happened, mom. She’s like this little body, 10 years old. And she said, my creative artistic side is so big in my brain, and it has just taken up all the room, and there’s just not space for the math. She’s like, it pushed the math out. And I love that, because that was kind of, I mean, maybe that happens in the brain. I don’t know. But I think other areas are developing.

And we need to pay attention to those. I think, for my own daughter, and so many of the parents I talk with, they’re really surprised. They’re so focused on the struggles, and most of them have multiple learning differences. And when you ask them, What does your kid really love? What are they really good at? Oh, some really cool stuff comes out, you know? So I think of my own daughter. She’s highly artistic, very creative. She thinks outside the box for new possibilities. So her problem solving skills, critical thinking are through the roof. And I think she’s had to really use those because she’s in a math class. It’s completely confusing. And she has to think, creatively, how am I going to figure this out?

She’s very empathetic. So kids with other learning differences or struggles, she’s like, the first one to be like, Oh, I wonder what’s going on for them. And then I also see a lot of resilience to things that have not always come easy. And so she’ll stick with something for almost too long. She was doing an assessment with Dr. Schreuder at Dyscalculia Services this summer and she took four times as long as the assessment was, and then we realized, when she saw the problem, instead of just looking at it and quickly being like, oh, that’s beyond my level, I should move on, which was the instructions from Dr. Shreuder. She looked at that, and she was like, I’m gonna figure this out. And she was gonna figure that out. So there’s a real resilience there, which is awesome. In this case, we didn’t want her to be so resilient.

But just in general, yeah, there’s always those things to look for in your kid. And I think by noticing those I talked about in my workshop, when you can notice those, those actually lower their anxiety about who they are and how they’re doing. And then they can actually handle things like the difficult math better when they’re lifted up in these other areas. So I love that question.

Lauren Clouser, Host

That’s great to think about. So what advice do you have for other parents who have a child with dyscalculia? You’ve given us a lot with education and advocacy. But do you have any other general advice?

Laura Jackson

Yeah, I think do what you can to just understand. It can feel really overwhelming. Like, when you don’t understand how someone can’t see numbers the same way. It’s very hard to imagine if you have a friend who’s colorblind, it’s really hard to imagine that they don’t see the colors that you see. And when they put together their outfits, and it’s a little bit off to you, it’s hard to imagine what that is like for them that the colors don’t look the same.

So I think about the same way of being curious with your kid when they’re showing a difficulty. It’s more helpful, I’ve found, to get curious, like, Hmm, what? Why is that a tricky thing? And you will probably figure out why instead of, I think I’m a very quick to fix kind of parent, and I have to slow myself down so much. But instead of seeing a problem and then saying, Oh, well, this is how you solve it. This is how you fix it. Just forget the solving and just be curious, like, what is their experience with this? And how do they view the world differently?

An example from a few years ago, it seemed like my daughter was never tracking when something was happening. So like an upcoming event. And she was always asking about it. And I thought I’m just going to do a family calendar on the wall. That makes a lot of sense. Calendars make sense to me, I love a good spreadsheet. That girl never looked at it. Meanwhile, my other daughter loved the calendar on the wall, she loves knowing what’s happening. But my dyscalculic daughter told me she’s like, I never looked at that thing. Because I can’t understand what it’s saying. It doesn’t make sense to me how the week is laid out in this grid.

And instead of pushing her on that, we ended up having a conversation of wow, okay, so those planners they give you at school that everyone encourages you to use and this will solve all your problems, that’s actually not a great fit for you, is it? She’s like, No, I don’t get it. It doesn’t make sense. So then we had this conversation, what would make sense if we need to plan ahead and you want to have an idea of a week? How would you think about that? She ended up trying her own schedule planner in her mind and how she thinks about it. If a teacher says to her, this is due on 11/25 she has no idea what that is, so she asked her teacher ‘could you tell me this is due next week?’ She can imagine that and she has her own planner that draws out what a week looks like to her. So I think just being curious with your kid and then trying to be understanding of…you don’t have to do what I did, where I bought like every book on dyscalculia and read for six years, but there’s a couple books you could read just to have a basic sense of it. And just feel like you understand a little bit more and that will help your kid immensely. It will also help you in your frustrations with them because it can be very frustrating. So yeah, slowing down, being curious, and trying to understand the deeper stuff going on.

Lauren Clouser, Host

That’s great advice. Would you be able to tell us about Discovering Dyscalculia, your website, and all your resources that you have available?

Laura Jackson

Yeah, a few years ago, like I said, I quit my job, and we moved out of the city, but close enough for my husband to commute. And I started reading Julia Cameron’s The Artist’s Way, and started writing from that book. And I didn’t know what my next career job was going to be. I knew it needed to be something to help provide for our family. But I didn’t know. So I started blogging, I was writing for the book, for the Artist’s Way book, doing my morning pages every day, it’s like three pages, long hand, all your thoughts.

And then I started a blog, so Discovering Dyscalculia started as a blog. And I was really just processing our own experience. But also I kept running into people who were curious but didn’t know anything about it. And I thought, I bet I’m not the only parent. And when I was looking, I remember furiously typing in like, you know, that was when mom blogs were big…but dyscalculia mom blog, math disability, mom blog, I couldn’t find any. And so I thought, if I was looking for that, surely some other parent is looking for it. So I just started blogging on there about our story and different experiences.

And one thing led to another, an editor from GHF Press found my blog, and I reached out and said, Would you write a book? And I thought, well, that’s crazy. But I thought I should just say yes. Because it looks like a need, and someone’s going to pay for me to do that. Yeah, let’s do it. And so that was a really good experience of just kind of putting it all into a story, really like our experience. And so then from that came, I’d find a new resource, so then I would share it on there, or people were asking, like, What books should I read? So I’m like, Oh, I’ll put together a book list.

And then last year, I started teaching workshops for parents on Zoom, just parents who were like, I need help. So that’s how it started, at first a blog. And then now just more, and then I started having teachers reach out to me, and then I started having dyscalculic adults saying, where’s this stuff for us? You know, so it’s kind of a community. I sent out a weekly email, just educating on dyscalculia. And I’ve just pulled back to monthly, because I have some other things in the works. But it’s a very interactive group, they always reply with their own stories. I love getting stories from people, really every week, I’ll have a new story from someone somewhere in the world about their story. And so many of them say, I thought we’re the only ones or I don’t know anybody else. So the real goal would be just raising that awareness. You know, I mean, if it’s 5% of the population or possibly up to eight, that’s a lot of people that need to know that others are out there.

Lauren Clouser, Host

Absolutely. Well, and like you said, you know, not everybody’s available to do that six years of research and ordering those books is expensive. So, it’s great that you’ve compiled all these resources that you didn’t have.

Laura Jackson

Yeah, I think I wrote that in the cover of the book of this is the book that I wanted to find and that wasn’t available. So I wrote what I would’ve wanted.

Lauren Clouser

Yeah. That’s amazing. Well, Laura, thank you so much. This was a great conversation. I think people are gonna get a lot out of it. And hopefully, it’ll continue to raise awareness about dyscalculia.

Laura Jackson

Thank you for what you guys are doing. You guys have been putting out a lot of great talks and webinars. And it’s just all the hardships of things and how there hasn’t been much information I have started saying when someone is looking for information, I’ll be like, we haven’t found that YET. It’s always yet, because it’s growing and there is such a growing interest. And so many people are discovering that there’s a reason that they’ve struggled with math and numbers. And so I feel really excited and hopeful about the future for this field. And so yeah, thank you guys for what you’re doing as well.

Lauren Clouser, Host

Thank you for listening to the LDA podcast. To learn more about LDA and to get valuable resources and support, visit ldaamerica.org