November 9, 2021

I Just Learned My Child Has Dyslexia…Now What?

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<b>Mike:</b>
Welcome to Voices of Compassion, CHCs podcast series providing courage, connection and compassion, highlighting topics that matter to our community, our parents, families, educators, and other professionals. My name is Mike Navarrete and I worked closely with the director of community connections at CHC and our current podcast host, Cindy Lopez. It is such a privilege that I get to be able to be here with you all on this very special episode as we talk about dyslexia, what do you do once you receive a diagnosis that your child has dyslexia and how do you navigate going forward?

Joining me today is Lisa Parnello and Dr. Vivien Keil. Lisa is a literacy specialist and Wilson Credentialed trainer and lower school director at Sand Hill school at CHC. Lisa has been teaching for over 15 years in grades kindergarten to eighth, and has taught general education, as well as special education. Dr. Vivien Keil is a pediatric neuropsychologist and consultant at CHC. She specializes in the developmental evaluation of young children and neuropsychological evaluation of children and adolescents. Dr. Keil has nearly 20 years of experience working with children and families.

Welcome Lisa and Dr. Keil, do either of you have anything that you would like to add as we start today’s conversation?

<b>Dr. Vivien Keil:</b>
Really excited to be here today and especially thrilled to be able to do this podcast with Lisa who’s just an incredibly experienced educator with students with dyslexia, so thanks for having me.

<b>Lisa Parnello, MEd:</b>
And I was actually just thinking the same about you Vivien.

<b>Mike:</b>
I do want to point out that the International Dyslexia Association mentions as many as 15 to 20% of the population as a whole have some of the symptoms of dyslexia. So, what are the common misconceptions of dyslexia?

<b>Lisa Parnello, MEd:</b>
I think one of the biggest ones I hear the most is, oh, that’s the one where they switch up the letters, right? And it’s really so much more than that. And a lot of times it’s more about how that child processes letters and when they see a letter on a page understanding that those letters represent different sounds and understanding how those work, but it also affects so much more and you see it when the kids start maybe switching some numbers around or you can hear it really when they’re young and they might say pasghetti instead of spaghetti, and one of the lesser known ones is in fact, the student might actually have trouble with remembering their math facts too and so dyslexia is really about how the brain works.

<b>Mike:</b>
Thank you Lisa for addressing one of the big misconceptions that it’s not just switching up letters on a page. It’s also important to look at other areas too, like working memory and how a child processes when it comes to math. How exactly do parents talk to their child once they receive a diagnosis of dyslexia and should parents approach this conversation differently, depending on a child’s age?

<b>Dr. Vivien Keil:</b>
So the conversation is a critical one to have with your child and I really would recommend that parents kind of choose the right time to have the conversation. We know that the school week is incredibly stressful on children with learning differences and they often feel overwhelmed already and so having a conversation like this might be better had on the weekends for example, when they have fewer demands on them and they’re just less stressful so whether that be when they’re outside in the backyard with you, or you guys are taking a walk together, and then once you figure out kind of what that right time is for your family, really thinking about building it on a foundation of strengths and a discussion around your child’s strengths, in addition to their weaknesses and so starting with things like for a student, it might be you’re a great out of the box thinker and you’re a fantastic science mind because you ask so many good questions and you’re a hard worker and a great soccer player. So you have all of these strengths that really build up your child and then after doing that, you can then have the conversation about you know, for all of us, we also have weaknesses, right, and so for you, some of those things that are harder for you are things like sounding out words or remembering all of your rules when you’re reading and writing or getting assignments done quickly. And you really can say to them now we know why those things are hard for you, we had an evaluation and we found out that your brain thinks differently and learns differently and we call that dyslexia. And so now that we know that you learn differently, it’s up to us as the adults in your life to figure out how we can teach you better in a way that will help you learn more easily. Ultimately what you want for your child is for them to be able to march forward and get older with a really solid understanding of like what are the things that I’m fantastic at and then what are my weak spots so that they can make sure that they are in an environment that suits their needs best.

<b>Lisa Parnello, MEd:</b>
And I think about it from the perspective of being a teacher and helping the kids realize they’re not alone, and I find that to be the biggest thing for our students is they think that they’re different and that there aren’t other kids like them and I love to use books in order to help kids understand their new diagnosis when they join my class or my school. And so ` one that comes to mind is Patricia Polacco was a very famous author and she wrote a book called <i>Thank You, Mr. Falker</i> about how she never learned to read until the fifth grade when somebody found out she had dyslexia and started teaching her in a different way and helping kids see that it really is about learning differently and they can learn, even if it took them a little longer. Part of your dyslexia is these wonderful strengths and so there’s this author who is famous for her illustrations and her ability to tell stories and readily utilizing those talents that come along with dyslexia because their brain works differently and seeing that they can become some of the most successful people in our society and talking to them about diagnosis and how there are many actors and CEOs and all sorts of people who’ve become very successful in life when they’ve overcome some of these challenges and utilize those strengths as they started growing.

<b>Mike:</b>
Thank you, Lisa and Dr. Keil. Lisa, you just mentioned making sure that child does not feel like they’re alone, and Dr. Keil, I really love how you talked about centering the conversation around a child’s strengths. What advice do you have for parents if their child is having a hard time accepting that they have a diagnosis of dyslexia?

<b>Lisa Parnello, MEd:</b>
In my experience most of our kids have been thrilled to find out there’s a reason they think differently. I’ve actually never come across a student who didn’t want to accept it. In fact, it explained why they felt a certain way for so long and why they’ve struggled. The biggest struggle is that they can’t learn things the way that they’re currently being taught and learning how to change the way that they’re approaching their tasks.

<b>Mike:</b>
I’m wondering Dr. Keil, if you have any advice on the people to consult with to help a child manage their diagnosis of dyslexia.

<b>Dr. Vivien Keil:</b>
So dyslexia is unique than some of our other diagnoses, like anxiety or depression in that it’s a learning difference. So your primary intervention team is your child’s educational team and that’s true whether your child’s in public school, private school, charter school, and any other variation of school. So whoever your child’s primary educators are, are the ones that you’re going to be working with a great deal to figure out kind of what is your child’s needs right now and how do we get their skills to the next level. I think realistically for many families, what this also requires is working outside of the immediate school setting with an educational specialist particularly in those early years, those school age years, where they’re learning all of the fundamentals, working with a learning specialist who understands kind of the underlying learning processes as well, not just reading, but they understand things like working memory and processing speed weaknesses, because those are very commonly seen among children with learning differences and so you really want to work with an expert, this is not just your academic tutor, right. They need to have specialty training and working with kids who actually have dyslexia. And this is where you might hear terms like Wilson, like Lisa is very well-trained in that method or Orton-Gillingham or Lindamood-Bell, these are all evidence-based approaches to remediating learning differences like dyslexia.

<b>Mike:</b>
Getting in touch with the learning specialist or an educational consultant working closely in the school environment, you would say is more appropriate than initially reaching out to a pediatrician, is that correct?

<b>Dr. Vivien Keil:</b>
That’s correct. Your child’s educational team, they’re going to be much more helpful and targeted for that particular learning difference where that circle of support expands is when potentially behavioral health specialists like therapists, psychologists would need to be pulled in are when there are what we call co-occurring disorders or in the clinical world you’ll hear us say things like a comorbid diagnosis and all that means is that there’s an additional diagnosis in addition to the learning difference. So among kids with dyslexia, we know that a very large percentage around 40% also have attentional differences and a diagnosis like ADHD.

You want to be aware of that comorbidity so that you can also, if that’s relevant for your child, make sure that you’re working with other health providers that can target the ADHD specifically. And then the other area to keep your eye on is anxiety. About a third of kids with learning differences also tend to have anxiety, they are in learning environments that do naturally teach to them. I think it’s more often than not you see anxious behaviors that go alongside the dyslexia.

<b>Lisa Parnello, MEd:</b>
Absolutely and I think a large part of it depends on when that child gets diagnosed. I tend to see it a lot less when a kid gets diagnosed by first or second grade or so, which that’s actually one of the other misconceptions is that you have to wait do diagnosis them they get older and the sooner you get diagnosed with it and they get that remediation, they have less anxiety because they don’t fall so far behind. Whereas when a student gets diagnosed in fourth or fifth or sixth grade, and they’ve had years of school failure, then the odds of that anxiety becoming higher and higher, the older they get and the more frustrated with school that they become when they feel isolated from their peers and it’s little things like being able to play video games and text with their friends on the video game when they realized they can’t read their friends messages, or they can’t spell the words properly for their friends to know what they mean when they’re typing in their games. And it’s things like that, that build up that anxiety. So the sooner that they get the help that they need, the less we see, but it is definitely a significant amount of our students that also have anxiety around schooling and being able to keep up in class.

<b>Mike:</b>
Hey there, just a quick note, make sure to follow us on social media so you don’t have to wait a whole week between episodes to get engaging, inspiring, and educational content from CHC. You can find our social handles linked on our podcast web page at podcasts.chconline.org.

At CHC, we focus specifically on learning differences, ADHD, autism, anxiety and depression. We do offer free 30-minute consultations. If you need guidance and support, CHC is here for you. We also offer comprehensive evaluations, clinical evaluations. So please do visit us at chconline.org.

So if a parent just finds out that their child has dyslexia, what does that exactly mean in terms of the child in the classroom environment?

<b>Lisa Parnello, MEd:</b>
I think it depends on the classroom setting that you’re in and depending on the kind of strategies that are already embedded in the program because each school district has their own choices in terms of the curriculum they use. And so making sure that you’re asking those good questions about what those programs include and which things that they might need to supplement. So whether that means that the child is in a pull out group that gets that explicit instruction. If the other students in the class aren’t struggling or that child might need to get some extra tutoring outside of school if their school isn’t offering that level of support that that child needs and it’s really important to think about their processing speed and their working memory. If the child has a teacher that talks really fast, if there’s two second grades, then maybe go to the one where the teacher runs at a slower pace and speaks a little bit more clearly with one direction at a time, or helping the teachers that if they’re going to give a long series of directions, they should give that child the bullet list of here are the top three things I need you to get done and helping them break down those directions so that they can remember them because otherwise they might get overwhelmed and they often forget the order that they’re supposed to do things in is another common thing for kids with dyslexia. So having some sort of little checklist of what are the things I need to get done in what order? They’re things that often can benefit the whole class. It’s more about working smarter, not harder so that way you don’t have to keep telling that kid the directions over and over the student knows where to look to find the directions everytime.

And I think it’s also really important that the teachers front-load the children about what changes are going to happen and the reasoning behind why their instruction might look different than their classmates and giving them those accommodations and whatever it is that they really need to be successful. And honestly, a lot of the kids who have dyslexia can get remediated, and a lot of times they don’t need special services for very long, if you catch them early. And even if they do need those intervention services longer after that it’s really about those accommodations. And I think there’s really that big impact of giving that child the time to do the things that they’re good at and giving them the chance to go to soccer and the chance to go to art class and all those things, instead of bogging them down with extra tutoring every afternoon, and really making sure that we’re not burning those kids out by giving them too much help, we really want them to still be kids and still be able to get out all of that happy energy and play with their friends and really foster those strengths. So it’s that balancing act of letting them be a normal kid, as much as they can, but also making sure that they get those interventions that they need.

<b>Mike:</b>
Establishing the proper and appropriate resources for school can truly make all the difference for a child. Can you talk about the importance between… establishing a parent to teacher relationship?

<b>Lisa Parnello, MEd:</b>
I think that is the most important relationship that a parent can foster during the time that a child is diagnosed and honestly through the rest of their academic career is to help that strong connection between home and school so that we can always be on the same page. And that way, if the parent is seeing a lot of anxiety in the morning, maybe giving a heads up to the teacher before they make it to school and then that way the teacher can structure the morning in a way that maybe takes off some of that stress and anxiety when they first get to the classroom. The parent is also the one who knows their child best, about what is their triggers and what is most likely to set them up for failure with the school day. So if they can preemptively talk to the teacher and say, “hey, my student really struggles with reading because of their dyslexia. So if you could avoid calling on them, unless they raise their hand and they are feeling confident that they can read that passage. Don’t cold call on them.” And helping the teacher understand what accommodations work best for that child. So helping to make sure that that child’s allowed to have audio books, especially for things like science and history that are full of vocabulary words that often don’t follow some of those common spelling patterns, or they might have words they’ve never heard of before, where the whole point of science and social studies is to learn the content it’s not really about the reading. And so if they can use an audio book, then they can be far more successful and that subject area might actually be an area of strength for them or if they’re doing an essay, if they can automatically typing it onto a computer and not necessarily having to hand write it onto a piece of paper, then that can take away a lot of the stress and anxiety that the child might have surrounding writing when they know they might make a bunch of spelling mistakes, the spellchecker can help them on the computer.

Dysgraphia, some of the kids have that as well in addition to dyslexia. So that one is more of an impairment with their writing abilities and sometimes the physical motor task of writing on paper and staying within the lines and having the letters be the right shape and the right size with the right placement on the line can be extremely challenging for them and so just by giving them a computer that they can type their answers it takes away a lot of that physical stress, which then leads to mental stress and then they get overwhelmed and then they shut down. A parent is much better at advocating for those accommodations, especially when the child is younger. And then as they get older, the parent can encourage their child to speak up about their own accommodations. So that gradual release of having that child speak up and get used to advocating to the teachers themselves, but the parent being that nice little safety net to catch them in case they forget to mention it to their new teachers and they get overwhelmed with the new school year and really helping to make sure that message gets passed along to the new teachers each year.

<b>Dr. Vivien Keil:</b>
And I think one of the common threads that you’ve heard from both Lisa and myself today is really this focus and emphasis on conversation and really talking about everything from strengths and weaknesses to accommodations and needing a break. And I think the power in this approach is very much that by doing this, you’re reducing the shame and the stigma associated with having a learning difference, right? This is just another conversation to be had. And the more that this child can kind of internalize it as such and truly become their own best advocate, the better off they’re going to be and the more likely that they will be one of those success stories that you always hear about.

Dr. Keil, I think that’s so important just being able to have a conversation with your child and really breaking down the child’s profile so that they can reach their full promise and potential. And Lisa, as you mentioned, establishing a strong parent to teacher relationship is very important. If a current academic setting for a child now is not working for them, then what should parents do?

<b>Lisa Parnello, MEd:</b>
I think that’s where they have to look at what are the other options in their area. So for example, I work with a school for kids with dyslexia and language-based learning differences. So depending on where you live, maybe there’s one in your area that really focuses just on kids with those learning differences, where that child can go to school with other kids who learn just like them in the classes are designed to support them. So there are schools for kids with dyslexia, and there are places that they can get help there, but then also if you don’t have that in your area, there’s resources like Decoding Dyslexia that has branches all over the United States, and they have resources for parents to have parent support groups and things like that and maybe they can offer ideas of what might be available in your area. As well as the fact that International Dyslexia Association, IDA has branches across America, as well as the national branch and they have lists of service providers of tutors and specialists that work specifically with kids with dyslexia, dysgraphia, and other language-based learning differences. And a lot of times, if the tuition looks scary there’s financial aid options that families can apply for because I know that that’s often one of things that scares people away. They look at those special schools and say, ugh, I can’t afford to do that, that’s as much as college and really looking at all their options to try to apply, try to get financial aid to do what you need to do to help your child be successful and get their needs met.

<b>Mike:</b><b>
</b>Lisa you touched on parents support groups, and I just want to mention to folks that CHC does offer parent support groups, and you can find more at chconline.org. You also mentioned that there are special schools for kids with dyslexia, and you are a teacher at Sand Hill school. Can you talk a little bit more about what makes Sand Hill school so special?

<b>Lisa Parnello, MEd:</b>
Absolutely. At Sand Hill I oversee our second through fifth grade and then we also have a middle school program of six through eighth graders, and we use the Wilson Reading System and they have personalized learning plans and the kids are put into groups that are exactly at their instructional level in order to remediate those skills, as well as receiving instruction at their grade level so that they don’t fall behind with the concepts that they should learn by their age. So when they were learning about nests in science last week, I watched the science teacher help the kids use branches and leaves and twigs to build nests and learn about why a bird might make a nest to create a safe place to live and really utilizing that hands-on approach to learning and having more than one teacher in the room so that way, if one teacher’s teaching and a student starts to fall behind and doesn’t know what to do, then he or she still has the ability to ask for help and be able to get that specialized help right next to them in order to help them keep moving along in the lesson and really being able to see that there’s other kids just like them, inclusion has a wonderful place in our educational system, but there’s also something wonderful to be said about having a whole class of kids that learn like them and helping them see that they’re not the only one who has trouble learning to read and they don’t have to worry about being picked on because they are the slow kid reading in the class because all the kids have been there before. They understand what it’s like to be the kid who’s falling behind or needs more help or needs more time and to really create those bonds. And I think that’s the other really special thing, is that social emotional connection that the kids have made. You can walk outside on the playground and you will see third graders playing with seventh graders because they’re just so well connected and letting the kids go and just be kids, and it runs like a regular school, but then each kid is just getting exactly what they need.

Thank you, Lisa and to learn more about Sand Hill School, please visit us at sandhillsschool.org. Do either of you have any key takeaways that you want our listeners to know?

<b>Dr. Vivien Keil:</b>
Just the importance of parent support and parent advocacy. So this process in terms of finding the right supports for your child who learns differently, it’s exhausting and it’s daunting and it’s stressful and you can’t help but worry what impact is this gonna have on them as they get older and once they’re adults and looking for jobs and everything like that and so the sooner you can find your community support, the better off you will be. So whether that is connecting to an LD support group, like the ones that we run for free at CHC or going online to a resource like understood.org that has lots of parent friendly resources, whatever you need to feel more comfortable being your child’s primary advocate, you have to take care of yourself before you can be your child’s best advocate, and I think the other piece around advocacy is that making that an actual explicit goal for yourself and your child. So by the time your kid is going off to college, they should be their own best advocate. And, while they’re in elementary school, the primary advocate is likely to be parent and that’s appropriate development, right? But as that child gets older and certainly by, for example, middle school, that advocacy should be much more of a team advocacy approach. You as parent, and child as their own self advocate with the next level of goal being at the high school level, you really want your child to be in a position where they’re the primary advocate for their needs.

<b>Lisa Parnello, MEd:</b>
In addition to that it’s really to make sure there’s always that open line of communication with that child’s educational team, as well as the home and keeping that flow back and forth. So it’s not just every time there’s a problem, but also every time there’s a success of, hey, my kid came home and read a book for fun for the first time ever or the teacher said your child volunteered to read in class for the first time ever. It’s really those positive moments that keep the kid and the family going, especially in those early stages, those little wins are just so important, and don’t wait necessarily for the teacher to tell you something’s wrong. And so speak up and ask for help when you think your kid might need it and may not be able to ask for that help themselves and more than anything, giving that child the chance to fill their cup and give them that happy childhood that they deserve, not just always focus on that area of weakness but always giving them that chance to do their art or their dance or their ballet or their piano or painting or, riding their bike outside and, really fostering those skills that make them happy.

Thank you, Lisa and Dr. Keil for sharing your expertise with us today. kids are so much more than their learning differences. I know, I learned so much talking to both of you, especially about student and parent advocacy, really focusing on the small wins and leveraging a child’s strengths. A special thank you to our listeners and we hope that you’ll join us again next week.

<b>Lisa Parnello, MEd:</b>
Thank you for having us.

<b>Dr. Vivien Keil:</b>
Thanks so much for having us.

<b>Mike:</b>
You can find us online at podcasts.chconline.org and follow us on our social media linked on our podcast webpage. Subscribe to Voices of Compassion on Apple Podcasts, Spotify, and other podcast apps, and make sure to sign up for our virtual village email list so you never miss an update or an episode. We always love to hear from you so send us an email or voice memo at podcasts@chconline.org or leave us a rating and review. We look forward to you tuning in each week.

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